tag:blogger.com,1999:blog-40603726862058619772024-03-16T02:23:40.950-05:00Tonia SaysBecause I don't speak for all disabled people, only myself:
My take on life with CP, C-PTSD and being neurodivergent. Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.comBlogger483125tag:blogger.com,1999:blog-4060372686205861977.post-74193226779873264242023-07-29T10:00:00.320-05:002023-07-29T10:02:33.092-05:00Celebrating Tonia: 9 Years of Tonia Says<p style="text-align: center;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCHhIUX4eyp3_3KvsiGMOgrPqudxs1vq0c8jEhE5cnYzUl6Tv_awHcbdmsrxLg6-zlc0Sb-MMtzOujOACAktqt9kJumjIzmfJR1lnDFOVdckB-bGuRD_ssjeBl_RVsZebdJQLLn-t2KkzRL9gP7f6aVG8gGnvwZ65aJ0lplpn2QojuRVVAS4H7CBpOH3I/s720/FB_IMG_1690496812183.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCHhIUX4eyp3_3KvsiGMOgrPqudxs1vq0c8jEhE5cnYzUl6Tv_awHcbdmsrxLg6-zlc0Sb-MMtzOujOACAktqt9kJumjIzmfJR1lnDFOVdckB-bGuRD_ssjeBl_RVsZebdJQLLn-t2KkzRL9gP7f6aVG8gGnvwZ65aJ0lplpn2QojuRVVAS4H7CBpOH3I/s320/FB_IMG_1690496812183.jpg" width="320" /></a></div><br /><div style="text-align: center;"><span style="font-size: x-small;"><span style="white-space-collapse: preserve;">[Image: Tonia smiling widely for the camera with chin-length brown hair. She's sitting profile in her candy apple green wheelchair, wearing a blue Ms. Write t-shirt, light gray sweatpants and teal sneakers with neon yellow laces.]</span></span></div><div style="text-align: center;"><span style="font-size: x-small;"><span style="white-space-collapse: preserve;"><br /></span></span></div><div style="text-align: center;"><br /></div><div style="text-align: center;"><span><span style="font-family: arial; white-space-collapse: preserve;">***</span></span></div><div style="text-align: left;"><span><span style="font-family: arial; white-space-collapse: preserve;"><br /></span></span></div><div style="text-align: left;"><span style="font-family: arial;"><span style="white-space-collapse: preserve;">Today marks 9 years of Tonia Says. To celebrate both the prolific work on this blog as well as Tonia, the incomparable human being, I asked friends to share their favorite posts and their thoughts about Tonia herself. It has turned into a beautiful memorial and celebration. You'll find my contribution at the end of the post. - Tara, Tonia's twin sister</span></span></div><div style="text-align: left;"><span style="font-family: arial;"><span style="white-space-collapse: preserve;"><br /></span></span></div><div style="text-align: left;"><span style="font-family: arial;"><span style="white-space-collapse: preserve;"><b>Note: Click on the blue or purple text to read favorite posts, pieces, or content mentioned.</b></span></span></div><div style="text-align: left;"><span style="font-family: arial;"><span style="white-space-collapse: preserve;"><br /></span></span></div><div style="text-align: center;"><span style="white-space-collapse: preserve;"><span style="font-family: arial;">***</span></span></div><p></p><p><span style="font-family: arial;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space-collapse: preserve;">Alyssa: </span><span style="white-space-collapse: preserve;"><span>Tonia Says means so much to so many people, including myself. </span></span></span></p><p><span style="white-space-collapse: preserve;"><span style="font-family: arial;"><span>Tonia Says was one of the first blogs I came across when I began writing about my own experience with CP. Before then, I had little to no connection with the disability community through my life and in many ways, didn’t even understand myself, and my own disability
Things I thought odd details about myself – the way I jumped at loud noises, or struggled with understanding directions and finding my way around unfamiliar spaces– were all </span><a href="https://toniasays.blogspot.com/2017/08/parenting-kids-with-disabilities-what.html" target="_blank"><span>symptoms of my CP</span></a><span><span> and I didn’t learn that until after I found Tonia’s blog.</span>
Through Tonia Says, I found community and understanding for the first time in my life, and that influenced my writing and the way I interacted with the world.
I learned about disability history and culture. I learned about </span><a href="https://toniasays.blogspot.com/2021/09/the-danger-of-forced-friendships.html" target="_blank">ableism</a><span> and ways to advocate for myself.
In short, Tonia Says changed my life and without her or her blog, I would have never connected with the disability community or claimed my own role in it.
Because of Tonia, I am able to say </span><a href="https://toniasays.blogspot.com/2020/07/forging-disability-pride-in-world-of.html" target="_blank">I am a proud disabled woman</a><span>.</span></span></span></p><p style="text-align: center;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space-collapse: preserve;">***</span></p><p style="text-align: left;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><b>Ellen Armendáriz Stumbo:</b> I first met Tonia online. Someone sent her a link to a blog post I wrote, and we began talking. She was one of those people who, I believe, had a sixth sense that became attuned to know when parents of disabled kids needed a little extra hand holding in the journey. At least she did with me.
Tonia made me a better parent. She confronted my <a href="https://toniasays.blogspot.com/2019/11/recognizing-subtle-ableism.html" target="_blank">ableism</a> with grace, even when I know it took a lot of emotional labor for her to educate me. And I know she did it out of love. I don't know that any words could ever fully express the gratitude I feel for how she changed my life, and in turn, the lives of my kids.
But also, she was my friend. We had a shared love of books and <a href="https://archiveofourown.org/works/30415389/chapters/74988120" target="_blank">writing</a>. She was much better at cheering me on than I was ever at cheering her on. Perhaps because she is the most prolific writer I’ve ever known, and I could not keep up with reading her work as fast as she wrote. And her<a href="https://toniasays.blogspot.com/2014/12/dragon-hearted-fairytale.html" target="_blank"> stories are so real</a> and authentically her. The disability representation that we all need.
She was also a poet.
Her emotions shared with a world through her written word, either through blog posts, her books, or her poems.
And about her <a href="https://toniasays.blogspot.com/2021/11/whats-so-wrong-with-self-advocacy.html" target="_blank">blog posts</a>... talk about a <a href="https://toniasays.blogspot.com/2016/04/lets-talk-about-effects-of-consistent.html" target="_blank">wealth of wisdom</a> and <a href="https://toniasays.blogspot.com/2017/08/parenting-kids-with-disabilities-what.html" target="_blank">information</a> for parents of disabled kids! She cared so much about us and our kids. That<a href="https://toniasays.blogspot.com/2020/12/the-bed-thing.html" target="_blank"> blog of hers</a> was a guidepost in my life.
Also, she had the best laugh. That big laugh that when I close my eyes, I can hear it!
We spent Thanksgivings and Christmases and birthdays together. Sharing those laughs, talking about disability and books, talking about favorite characters from shows, and sometimes she would sing. Yup, if you know Tonia, you heard her sing at some point, probably a Disney tune or a song from a favorite musical.
I miss her.
Oh how I miss her.
I was so fortunate to know her, and to call her my friend.
I love you Tonia!
</span></p><div><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></div><p style="text-align: center;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space-collapse: preserve;">***</span></p><p><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></p><p><span style="font-family: arial;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space-collapse: preserve;">Emily Ball</span><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">: I learned that it’s important that no matter what, it’s important to tell nondisabled people that you know more about your disability than they do. </span></span></p><p><span style="font-family: arial;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">I also learned about <a href="https://toniasays.blogspot.com/2016/01/lets-talk-about-place-blindness-and-cp.html" target="_blank">[place] blindness</a></span><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"> from her and that I have it. I’ve learned so much from her and I was eternally grateful for her. </span></span></p><p><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">I’ve been struggling with some things recently and I really wish she was here. I miss her. </span></p><p style="text-align: center;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">***</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Kayla Carlson</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">: I met Tonia through a mutual friend, and honestly at first I was nervous because I’d seen some of her content, and was like “Oh, this person is way too cool to be my friend.” While I was totally right about her coolness level, she was such an amazing friend. </span></span></p><p style="text-align: left;"><span style="font-family: arial;"><span style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">I can’t even begin to count <a href="https://toniasays.blogspot.com/2021/06/13-reasons-why-scene-alex-climbs.html" target="_blank">the little moments</a></span><span style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"> where I was reading a <a href="https://toniasays.blogspot.com/2020/12/my-thoughts-on-ali-stroker-in-christmas.html" target="_blank">blog post</a></span><span style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"> or one of her works</span><span style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"> where there was just the feeling of <a href="https://toniasays.blogspot.com/2021/04/10-ways-our-great-grandparents-showed.html" target="_blank">being completely understood</a></span><span style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">. A feeling I’d experienced but never been able to put words to written on the page. It’s rare to <a href="https://toniasays.blogspot.com/2021/03/christopher-diazs-glorious-disabled.html" target="_blank">be so seen</a></span><span style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">, but I feel like <a href="https://toniasays.blogspot.com/2021/07/disability-pride-month-q-a.html" target="_blank">Tonia really saw me</a> in what was an unfortunately brief but incomparably meaningful friendship. </span></span></p><p style="text-align: left;"><span style="font-family: arial;"><span style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">I told her I would leave a comment on every single chapter of <a href="https://archiveofourown.org/series/1321766" target="_blank">the Disuphere Universe books</a></span><span style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"> she wrote, and even though I did, I just wish there was more. </span></span></p><p style="text-align: left;"><span style="font-family: arial;"><span style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">She had so much to give to the world and the people she cared about. Even so, I’m glad the blog is still up for people to stumble upon. In fact, when a friend’s baby was discovered to have a disability, I offered her a link to Tonia’s blog to give her <a href="https://toniasays.blogspot.com/2017/06/parenting-kids-with-disabilities.html" target="_blank">some insight</a></span><span style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">. The friend found it so helpful to hear from someone who was actually disabled speaking on various disability related topics instead of the loud and all-too-prevalent nondisabled voices speaking on subjects they will never understand with the nuance and complexity a disabled person would. </span></span></p><p style="text-align: left;"><span style="white-space-collapse: preserve;"><span style="font-family: arial;">I miss her. I love her. I thank her for her friendship. 💓</span></span></p><p style="text-align: center;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></p><p style="text-align: center;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">***</span></p><span id="docs-internal-guid-61322afc-7fff-9276-183e-baf2d839010f"><span style="font-family: arial;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space-collapse: preserve;">Alice Kina Diehl: </span><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">Tonia Christle passed away this year. I miss her everyday. Thank goodness, her twin sister Tara Christle is still here. This <a href="https://toniasays.blogspot.com/2018/02/review-9-1-1-1x06-heartbreaker.html" target="_blank">small review</a></span><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"> sparked such a special friendship for years and ongoing. Film and Television is this important! 🤟🤟🤟</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">***</span></p><span style="font-family: arial;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space-collapse: preserve;">Amanda Diehl: </span><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">Tonia was a safe space when I needed it most 💜</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">***</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><b>Emery:</b> I think it’s impossible for someone to read Tonia’s blog and <i>not</i> learn from it, and it was also impossible to <i>know</i> Tonia and not learn something. And not just in a disability justice way. Tonia made damn sure that everyone she cared about learned that they were lovable and worth loving.
I learned so much from <a href="https://toniasays.blogspot.com/2017/11/disability-on-fosters.html" target="_blank">Tonia’s painstaking line-by-line reviews of media</a>, where, in the early days of our friendship, she and Tara called my attention to things I had completely missed in <i>The Fosters</i>’ terrible TBI storyline (aka the whole thing.) And in later years, I used [it] as a challenge to see how much I could “catch” on my own from the original content before reading the review. </span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">I absolutely loved when Tonia shared stories about her own experiences, how she could combine What Parents Need To Hear™️ with authentic disabled realness. I loved watching her writing evolve as she freed herself from the fawn response and started being even more honest, less afraid to speak her mind, and less concerned with being palatable to nondisabled people. I loved watching Tonia come into her power as she grew as a writer and a person. I felt honored that she chose to share so much of that with me as her friend and with all of us as the audience of her blog.
I still feel like one of the best accomplishments of my life is that a conversation I had with Tara and Tonia over Marco Polo inspired <a href="https://toniasays.blogspot.com/2020/06/therapy-series-when-everything-is.html" target="_blank">a summer blog post series</a>. I love that Tonia was willing to have complicated conversations about tough and potentially traumatic topics as a regular part of our friendship. I loved that she felt like my questions and our conversation were important enough to address more thoroughly and to share with others. And I loved the series that came out of that conversation - if you haven’t read it, you should check it out!
I think the most incredible thing about Tonia’s blog is seeing the way she was able to connect to so many people with all of her <a href="https://toniasays.blogspot.com/2020/01/we-belong-middle-grade-novel.html" target="_blank">different forms of writing</a>. There was something for everyone: Poetry, media reviews, personal stories, interviews, hell, even product recommendations! Topics as far and wide as CP, trauma, disability community, childhood/growing up, advice, mental health, media representation, NaNoWriMo, and even illness and dying. Seeing comments on the blog or the Tonia Says Facebook page from regular readers who I didn’t know at all was such a wild experience - just knowing that Tonia was reaching all of these people, and I feel like the luckiest in the world to have really known her.
Tonia taught me that I could take up space. That I matter. That it’s okay to ask for what I need. That it’s okay to <i>need</i> things - to need <i>people</i>. That she would always be there for me. All of that stuff is way more important than any book review.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">***</span></p><span style="font-family: arial;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space-collapse: preserve;">Julie Idsinga</span><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">: I <i>love</i> this 9th anniversary celebration, and have 2 posts in particular I keep thinking of, besides the beauty of getting to know Tonia herself.</span></span></p><span style="font-family: arial;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">One phrase that really stuck out to me, and has come back to me many times, I think came from Tonia's <a href="https://toniasays.blogspot.com/2016/07/lets-talk-about-faith-part-7-mission.html" target="_blank">post about being in Costa Rica</a>, with a little boy, and she said something along the lines of "Where everyone is disabled, nobody is." </span></p><span style="font-family: arial;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">Wow. Simple. And profoundly true. I could <i>feel</i> that feeling as I read it.</span></p><span style="font-family: arial;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">The other blog post series that spoke to me earlier, and again recently, was the series on <a href="https://toniasays.blogspot.com/2021/11/unpacking-i-cant-interview-withme.html" target="_blank">unpacking "I can't"</a>. </span></p><span style="font-family: arial;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">I can relate to so much of it, and I hope professionals and parents can also read and learn from personal experiences and perspectives. </span></p><span style="font-family: arial;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">I love that Tonia openly shared her own experiences, but was also always clear and sensitive to the fact that her experiences and opinions were hers, and that all of us with Cerebral Palsy or other challenges may feel or experience the world differently.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: arial;">There is <i>so</i> much more I could say about Tonia, and the impact she has had on my life... Her joy, her care for others, even while she was enduring so much, and her constant hope to make a positive impact on people's lives. She has... More than I can say. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span>You both have</span></span><span face="Arial,sans-serif" style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;"> 💛💜</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">***</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><b>K</b>: Tonia was—is—one of the most beautiful people I have ever known. She was the kind of friend who scrawled her phone number in the margin of her letter, even though her number was in my phone contacts already, just so I'd have it there ... just so I knew she was there. She was love, and light, and fire, with an incredible capacity for empathy and advocacy. She loved with a gentle fierceness, and I can still hear her laugh—can still hear the way she'd say, "Did you want to say more about that?" before we moved to a new conversation topic, because she wanted me to know that she was there to listen.
I feel closest to her now when I read her words. One of my favorite blog posts of hers was her <a href="https://toniasays.blogspot.com/2016/07/lets-talk-about-faith-part-7-mission.html" target="_blank">story about Nico</a>--that embodied so much of what I love about Tonia, her perceptions, and her writing.
She was the sister I never had as a child, and she loved and accepted every part of me—<a href="http://poem-a-day-tonia.blogspot.com/2016/04/my-challenge.html" target="_blank">CP included</a>.
I love her.
I miss her.
</span></p><div><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></div><div style="text-align: center;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">***</span></div><span style="font-family: arial;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space-collapse: preserve;">Alisa Marie</span><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">: I’ve been struggling to know what to write for this. </span></span></p><span style="font-family: arial;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">Tonia showed me how to be comfortable with my human limitations. To accept myself as I am, without cleaning myself up first.</span></p><span style="font-family: arial;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">She taught me that all things that are different don’t need [to be] changed to fit the mold.</span></p><span style="font-family: arial;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">She taught me the power of being a cheerleader.</span></p><span style="font-family: arial;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">I miss her.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><br /></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">***</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Kayla Rodriguez</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">:</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> </span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Tonia. What [a] beautiful person to have graced this planet we all share. She was warmth and acceptance and the real definition of love. Her passion for words and advocating was something I watched proudly. Her work deserves so much praise and award. I know her legacy will live on in so many hearts. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><b id="docs-internal-guid-6ee574b7-7fff-1777-3a10-56d3a4cff607" style="font-weight: normal;"><br /></b></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: arial;">She taught the world how to be still and listen for the heart. Something a chaotic, entitled culture does not do naturally. She showed how to gently love one another. To accept each other and not set expectations on one another.</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: arial;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> </span><span style="white-space-collapse: preserve;">I have referenced her series and her words to many people. It is my opinion that her <a href="https://toniasays.blogspot.com/2016/06/lets-talk-about-faith-part-1.html" target="_blank">series regarding faith and how it should look towards disabilities</a> ought to be read by every single Christian that believes in the gift of healing. We need Tonia’s truth on the rejection that zealous faith causes to people with disabilities. I wish it weren’t needed, but alas it is. Her words broke my heart and opened my eyes in a way that I am ashamed to say they were not open before. I am thankful for her vulnerability and maturity to face such a grave horror and speak against it.</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><b style="font-weight: normal;"><br /></b></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: arial;">She was joy and liveliness! Her personality was so enjoyable. She could laugh and joke like no other. You could lose all track of time sitting next to her enjoying everything from cookies to deep discussions. Her affection was so sweet. Her hugs were warm and it felt like they healed the aching parts of your heart. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><b style="font-weight: normal;"><br /></b></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: arial;">She was brave and courageous. I hope we can all be like her more. May her heart song continue to sing in the earth. She loved and lived so beautifully. Forever missed and forever adored.</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">***</span></p><span style="font-family: arial;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space-collapse: preserve;">Marissa Shefveland</span><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">: Tonia was tenacious and did exactly what she set out to do through her words and stories. I was lucky enough to read her <a href="http://thenanobookshelf.blogspot.com/2004/11/belief-chapter-1.html" target="_blank">earliest stories</a> and knew she had a gift. She always encouraged others and saw the best in everyone she met. I’m sad I let time and distance separate us, but I know she blessed many lives and is very loved and missed.</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;">***</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Vilissa Thompson</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">: Knowing Tonia meant knowing another disabled person who loved words as much as I did. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><b id="docs-internal-guid-69d6bb6e-7fff-b990-9466-7f30e52ec9fe" style="font-weight: normal;"><br /></b></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: arial;">Tonia was one of the first self-published disabled authors I found online, and getting to know her & Tara became a pleasant friendship. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><b style="font-weight: normal;"><br /></b></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: arial;">Tonia was always excited to read whatever new piece I wrote, and celebrate the wins I was accomplishing in my work. That’s the kind of person she was - loving, warm, and incredible with words. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><b style="font-weight: normal;"><br /></b></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: arial;">I miss hearing her write about a new blog post or one of her books she was drafting. I miss talking about favorite shows with her, or just her checking in to say hello. Tonia was the friend that was always there, from the good moments to the tough ones. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span style="font-family: arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Tonia gave so much, and I hope she knew how loved and valued she was. She was truly amazing. I’m glad to have known her for almost a decade.</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-family: arial;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">***</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-family: arial;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="white-space-collapse: preserve;"><b>Tara:</b> Tonia originally created Tonia Says because she hoped it would be a bridge between nondisabled parents and disabled children. But more than anything, I think she wished it could be a bridge to reach our parents in a meaningful way. So that they could truly see and understand her. As that hope gradually gave way, Tonia adapted. And Tonia Says became <a href="https://toniasays.blogspot.com/2016/07/lets-talk-about-faith-part-5-jump.html" target="_blank">a safe haven</a> where disabled people could come to experience <i>being</i> seen and understood. Sometimes, for the first time.</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="white-space-collapse: preserve;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="white-space-collapse: preserve;">When Tonia Says began back in 2014, I didn’t believe I could claim a disabled identity. I’d been raised as a <a href="https://toniasays.blogspot.com/2016/02/lets-talk-about-typical-siblings.html" target="_blank">nondisabled child</a>. I just thought I was really bad at it. But slowly, as I was exposed to her work, the work she shared by other people with disabilities, and most importantly, the disabled friendships she cultivated through this blog, I saw myself. And it healed a part of me that I didn’t know was broken to be able to own my disabilities. By accepting them some days, and other days railing against oppressive systems, people or representation. Some days, I was sad and disappointed by my limitations. And no matter what, Tonia would tell me “However you feel is okay.” </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="white-space-collapse: preserve;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="white-space-collapse: preserve;">Over the years, Tonia has used Tonia Says and other platforms to create tangible change in disability representation in the media. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="white-space-collapse: preserve;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="white-space-collapse: preserve;">She reached out to an <a href="https://ficdirectory.tumblr.com/post/120648034452/casting-a-disabled-person-for-the-role-of-a" target="_blank">able-bodied actor who played a disabled character</a> for years on network TV to gently explain why some disabled people disagreed with the casting of him in a disabled role. The actor understood and in years following, he said publicly that if a revival of the show took place,<a href="https://www.billboard.com/music/music-news/kevin-mchale-wouldnt-play-artie-glee-reboot-1235172930/" target="_blank"> he would not reclaim his original role</a> due to a need for authentic disabled casting.</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="white-space-collapse: preserve;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span><span style="white-space-collapse: preserve;">Tonia’s tireless work pointing out the <a href="https://ficdirectory.tumblr.com/post/163653464427/an-open-letter-to-the-fosters-writers-from" target="_blank">harmful disability representation</a> in Seasons 4 and 5 of <a href="https://toniasays.blogspot.com/2017/11/disability-on-fosters.html" target="_blank"><i>The Fosters</i></a> led to the groundbreaking episode 5x11, “Invisible” in 2018. (Now available to stream on Hulu.) We saw scenes that centered the disabled character as someone with legitimate feelings and agency. The word “ableism” was said on TV for the first time we could recall. The TV parents apologized for the harm they did to their disabled teen and told him, “Honey, you’re not broken.” </span></span><span style="white-space-collapse: preserve;">These showrunners and writers have gone on to create <i>Good Trouble</i>, with more nuanced disability storylines and authentic casting.</span></span></p><div><br /></div><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="white-space-collapse: preserve;">I loved how collaborating on this blog brought us together to discuss disability culture and pride, however I believe the work she was proudest of was the last installment of her <a href="https://archiveofourown.org/series/1321766" target="_blank">disabled fiction series</a>, called <a href="https://archiveofourown.org/works/34730284/chapters/86474167" target="_blank">Quite Alive</a>. Quite Alive delved into so many disability culture issues that we’d never seen represented before in a book. Things like disclosure, care dynamics, and personal accountability with ableist behaviors, to name a few. Quite Alive was the last longform work Tonia was able to complete, finishing it just days before her initial hospitalization to diagnose the illness that eventually took her life. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="white-space-collapse: preserve;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="white-space-collapse: preserve;">Tonia grieved as the losses piled on top of her mercilessly – pain control, mobility, writing, autonomy and ultimately life – <i>and</i> she also loved with such abandon, laughed and smiled, hugged and kissed.</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="white-space-collapse: preserve;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="white-space-collapse: preserve;">Even in her last months when Tonia was unable to continue writing, she fought for the care and safety of herself and others. She was both scared and tenacious, both devastated and fierce, in the face of institutional harm and death. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="white-space-collapse: preserve;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="white-space-collapse: preserve;">In these last months, I’ve experienced both the earth-shattering loss of my twin, my soulmate, my favorite, and the feeling that she is just as close to me as she was in life. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="white-space-collapse: preserve;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial;"><span style="white-space-collapse: preserve;">Tonia, this is for you. A celebration of your life and your blog. A place to mourn this crater created by your absence. Both. I love you endlessly, and I hope you knew in life and continue to know now how incredible you are. Thank you for everything.</span></span></p><div><br /></div><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: arial;">***</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><br /></p><div><span face="Arial, sans-serif" style="font-size: 14pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space-collapse: preserve;"><br /></span></div></span>TaraJeanhttp://www.blogger.com/profile/14361688697889320357noreply@blogger.com2tag:blogger.com,1999:blog-4060372686205861977.post-24134591535729349042023-03-24T12:16:00.001-05:002023-03-24T12:16:48.571-05:00<p style="text-align: center;"> Tonia M Christle</p><p style="text-align: center;">1981 - 2023</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJy9V6a2cEh8UK7fArHfWSVWN9r5TcrV2oHfKGulFSt4icw4qlqmLD6Jfp1bjWXOBk6Kx1eaRVKVQm7-2ou8nfnLNJme3Q9TrlWSlXUIuxLuHCJ6n-mrrXxG3LDR2FyvGXDvMB6jRJk6nRc3SgKG4OXnPBjBnwXtPV6QUJ7zdEygI0PGReQ3r4Va20/s315/received_921997889138002.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="315" data-original-width="235" height="315" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJy9V6a2cEh8UK7fArHfWSVWN9r5TcrV2oHfKGulFSt4icw4qlqmLD6Jfp1bjWXOBk6Kx1eaRVKVQm7-2ou8nfnLNJme3Q9TrlWSlXUIuxLuHCJ6n-mrrXxG3LDR2FyvGXDvMB6jRJk6nRc3SgKG4OXnPBjBnwXtPV6QUJ7zdEygI0PGReQ3r4Va20/s1600/received_921997889138002.jpeg" width="235" /></a></div><br /><p>So, What's The Hardest Part?</p><p>by Tonia M. Christle</p><p><br /></p><p>Facing this:</p><p>The hardest part.</p><p>This</p><p>Having nothing</p><p>To hide behind.</p><p>This</p><p>Reality</p><p>Lurking</p><p>Behind so many</p><p>Curtains.</p><p>This room</p><p>Without me</p><p>Looms.</p><p>I want</p><p>To live forever,</p><p>Is that</p><p>Too much</p><p>To ask?</p><p><br /></p>Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.com2tag:blogger.com,1999:blog-4060372686205861977.post-14399679419216464592022-07-29T12:14:00.001-05:002022-08-07T14:20:18.954-05:008 Years Blogging At Tonia SaysIt's hard to believe it's been 8 years since I started blogging here. A lot has happened especially over the last year that has limited my time for blogging.<div><br /></div><div>And I miss it.</div><div><br /></div><div>I miss it so much it hurts.</div><div><br /></div><div>But I believe that I'll come back to it.</div><div><br /></div><div>I miss you all.</div><br /><div><br /></div><div><br /><div class="separator" style="clear: both; text-align: center;"></div></div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJVCWjW5Tf3JXvGhNu7lgVhlYarDq93yAM8n6UvsVw-yPYi1q0aiGeJ9UtGggjS6KzadSUYKJYlyx4qSq7CMGCNpUNd3hTfS33hQxDhriuXxynodrexqxQn_TmjgY8IKT5WPCa1rF21HNpJiL6WVDcrno9HHLZvAmgxqxMDqlmF8OK2AIjDDnQmhR0/s720/orca-image--913255145.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="704" data-original-width="720" height="313" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJVCWjW5Tf3JXvGhNu7lgVhlYarDq93yAM8n6UvsVw-yPYi1q0aiGeJ9UtGggjS6KzadSUYKJYlyx4qSq7CMGCNpUNd3hTfS33hQxDhriuXxynodrexqxQn_TmjgY8IKT5WPCa1rF21HNpJiL6WVDcrno9HHLZvAmgxqxMDqlmF8OK2AIjDDnQmhR0/s320/orca-image--913255145.jpeg" width="320" /></a></div><br />Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.com6tag:blogger.com,1999:blog-4060372686205861977.post-35647769071984171792022-03-28T10:00:00.132-05:002022-03-28T10:00:00.182-05:00Interview Questions for Current Work<div style="text-align: center;"><b>2,200 words</b></div><div style="text-align: center;"><b>17 minute read</b></div><div><b><br /></b></div><div><b>Previously:</b> <b><a href="https://toniasays.blogspot.com/2021/10/interview-questions-about-writing.html">Interview Questions About Writing</a></b> /<b><a href="https://toniasays.blogspot.com/2022/03/interview-questions-about-my-books.html"> Interview Questions About My Books</a></b></div><div><br /></div><div>As of this writing, Tara and I are eight chapters into our latest work, Appearances, and we wanted to answer the third set of <b><a href="http://lovewritinglife.com/author-interview-questions/">these questions</a></b>. The summary (since it’s referred to a few times in the questions) is as follows:</div><div><br /></div><div><i>Middle school teacher, Sam Jensen and three of her students face a situation none of them is prepared for. The only way through it is together.</i></div><div><br /></div><div>Since we love discussing writing together, we thought we’d unpack some of the secrets of <b><a href="https://archiveofourown.org/works/36751339/chapters/91679737">Appearances</a></b> for you.</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>Can you share with us something about the book that isn’t in the blurb?</b></div><div><b><br /></b></div><div><b>TONIA:</b> In this book, we are introducing three new characters, middle school siblings Shay, Oscar and Clancy Flynn. We love them to bits.</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>Are there any secrets from the book (that aren’t in the blurb), you can share with your readers?</b></div><div><b><br /></b></div><div><b>TARA: </b>There are going to be more perspectives than just the main four.</div><div><br /></div><div><b>TONIA: </b>Yes, if you love the Disuphere universe and its characters, definitely tune in to read this one!</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>Can you share a snippet that isn’t in the blurb or excerpt?</b></div><div><b><br /></b></div><div><b>OSCAR</b></div><div><b><br /></b></div><div><i>I am an activist because I exist. </i></div><div><i><br /></i></div><div><i>Some might call it Being Annoying, but they won't forget about me, will they?</i></div><div><i><br /></i></div><div><i>At least, I thought it would be that simple.</i></div><div><i><br /></i></div><div><i>But public middle school is basically a giant ball of suck. It's so effing large that the wheelchair that used to be just for vacations, long shopping trips and amusement parks is now something I'm forced to use every single day. </i></div><div><i><br /></i></div><div><i>And I'm just going to say it. I'm not one of those ripped athletes who roll as if every surface is Costco smooth. My arms didn't get the memo that they would, in fact, be noodles hanging from my shoulders most of the time.</i></div><div><i><br /></i></div><div><i>And once I actually get to my classes? My seat is usually in the very back of the room, and in my first hour health class, it’s at a table that faces a wall. Because of overcrowding. Or a lack of imagination. I don't know.</i></div><div><i><br /></i></div><div><i>It's hard to be a noodle-armed activist talking to a wall, okay? </i></div><div><i><br /></i></div><div><i>It's depressing. </i></div><div><i><br /></i></div><div><i>So, I started asking to work in the library. </i></div><div><i><br /></i></div><div><i>Finding the secret door had been a total accident. </i></div><div><br /></div><div style="text-align: center;">***</div><div><b>Does one of the main characters hold a special place in your heart? If so, why?</b></div><div><b><br /></b></div><div><b>TARA: </b>Why would you ask such a horrible question?</div><div><br /></div><div><b>TONIA:</b> I know! I can’t pick among my children!</div><div><br /></div><div><b>TARA: </b> You’re asking for a dissertation. You realize that.</div><div><br /></div><div><b>TONIA:</b> Absolutely. So, who should we start with? (Who do we love the most?)</div><div><br /></div><div><b>TARA:</b> I’ll pretend I didn’t see that last part! Let’s talk about Sam first. She’s someone you officially introduced in Quite Alive, right?</div><div><br /></div><div><b>TONIA</b>: She is. She definitely holds a special place in my heart because she’s this intriguing combination of super blunt and really vulnerable. So that’s what first attracted me to her, but here, we get to see Sam as a teacher – another side to her completely.</div><div><br /></div><div>She’s not very confident in her teaching abilities – which we saw in Quite Alive – but seeing her through her students' eyes, we can see just how important Sam and her classroom are to so many of these kids. She creates the safe space so many of them need.</div><div><br /></div><div><b>TARA: </b>Yes! Love her! And then, we have the kiddos!</div><div><br /></div><div>I love writing all of the kids, honestly, because they’re complete opposites of me, personality-wise. Unapologetic. Unafraid to take up space. </div><div><br /></div><div><b>TONIA:</b> The kids are really great because they’re so unlike any other character I’ve written so far, especially any kid-character. They’re all very confident and grounded and they’ve been well-loved.</div><div><br /></div><div style="text-align: center;">***</div><div><b><br /></b></div><div><b>What was the inspiration for the story?</b></div><div><br /></div><div><b>TONIA:</b> I can say that I remember we were trying to come up with some kind of activity to see us through a difficult time. And with us, a shared activity that really takes up our focus is usually writing. So I know we knew we wanted to write something and we had one kind of false-start before we started writing Appearances. But you really came up with the idea. Do you want to share more about how it came about?</div><div><br /></div><div><b>TARA:</b> I think the main thing we were focused on was, “What is something that would keep our focus and bring us joy?” And for me, I remember saying that I wanted to write kids. So, the idea for this project really stemmed from that desire.</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>What is the key theme and/or message in the book?</b></div><div><b><br /></b></div><div><b>TARA: </b>So far, I'd say that a major theme is that trauma presents differently on different people, and that no one really knows how they'll react in an emergency situation.</div><div><br /></div><div><b>TONIA: </b>I think a key message in this book so far is that disabled lives do have value and can and should be prioritized in emergencies.</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>What do you hope your readers take away from this book?</b></div><div><b><br /></b></div><div><b>TONIA: </b>I hope readers begin to think of and consider disabled students in emergency situations.</div><div><br /></div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>What is the significance of the title?</b></div><div><b><br /></b></div><div><b>TONIA:</b> Tara, do you want to take this one? Since you titled it?</div><div><br /></div><div><b>TARA:</b> Honestly, I was thinking about a play on "Disappear / Disuphere," for obvious reasons. Also, though, I think there's a lot in the story about how people appear - without giving too much away…</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><br /></div><div><b>Tell us about the process for coming up with the cover.</b></div><div><b><br /></b></div><div><b>TARA:</b> This was such a fun collaboration with an artist friend! She created a beautiful piece based on what we talked about! It's something I definitely want hanging on my wall!</div><div><b><br /></b></div><div><b>TONIA: </b> Absolutely! I loved how all three of us collaborated on this, and I love how she incorporated significant objects in the lives of the characters – but how they’re mostly in shadow. The bookcase is so majestic and magical – definitely gives me Disney’s Beauty and the Beast vibes.</div><div><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjFdIbd6_IC5gex2nzzH1baDj-BuumeX_9vpAqBzJzMRaYMB8bLjgkiRvzn3nxPxQ-tYQSnWxRPwYKxK8gLG-Gj09L6Szj9Ed7vPfe7x9xg8egN9YQEkywjc-fyR9UnDHSKtqjCyvjBOK_aiWfyA4Om5KnFS1xs8CLuRK-_vF2gXkBi30FyqKvh3Ua/s2048/appearances.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2048" data-original-width="1489" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjFdIbd6_IC5gex2nzzH1baDj-BuumeX_9vpAqBzJzMRaYMB8bLjgkiRvzn3nxPxQ-tYQSnWxRPwYKxK8gLG-Gj09L6Szj9Ed7vPfe7x9xg8egN9YQEkywjc-fyR9UnDHSKtqjCyvjBOK_aiWfyA4Om5KnFS1xs8CLuRK-_vF2gXkBi30FyqKvh3Ua/s320/appearances.png" width="233" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[The cover of Appearances shows a giant bookcase with a crack in it where light is coming into the darkness. There are also various personal items belonging to the characters hidden in the dark -- Oscar's chair, Sam's sweater, Shay's truck and Clancy's guitar.]</td></tr></tbody></table><br /><div style="text-align: center;"><br /></div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>What is the future for the characters? Will there be a sequel?</b></div><div><b><br /></b></div><div><b>TONIA:</b> One thing I love about writing this universe is that we follow the characters after the usual story is done, and there have been ten sequels to the original story, so I think the chances of a sequel to this one are high.</div><div><br /></div><div><b>TARA:</b> I would love a sequel!</div><div><br /></div><div><br /></div><div style="text-align: center;">***</div><div><b><br /></b></div><div><b>Do you write listening to music? If so, what music inspired or accompanied this current book?</b></div><div><b><br /></b></div><div><b>TONIA:</b> One song I’ve listened to (particularly when writing Clancy or her mom, Shannon) is Hope by Alexis Ffrench.</div><div><br /></div><div><b>TARA: </b>I listen to Mirror by Helen Jane Long mostly while writing.</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>If you had to describe Sam / Shay / Oscar / Clancy in three words, what would those three words be?</b></div><div><b><br /></b></div><div><b>TARA: </b>For Sam, I'd say tender, compassionate and blunt.</div><div><br /></div><div><b>TONIA: </b>And for Sam, I’d say loving, sensitive and caring.</div><div><br /></div><div><b>TARA:</b> Shay is joyful, protective and focused.</div><div><br /></div><div><b>TONIA:</b> Shay is whimsical, protective and confident.</div><div><br /></div><div><b>TARA: </b>Oscar is bold, conflicted and non-compliant.</div><div><b><br /></b></div><div><b>TONIA:</b> Oscar is a fighter, a rebel and tender-hearted.</div><div><br /></div><div><b>TARA:</b> Clancy is afraid of failure, driven and eccentric.</div><div><b><br /></b></div><div><b>TONIA:</b> Clancy is creative, intelligent and soft.</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>Your story is set in 2023 in a non-pandemic alternate universe. Why did you choose that as the setting for your book?</b></div><div><b><br /></b></div><div><b>TONIA: </b>I think because we need a break from reality and need the hope of a future without a raging pandemic, honestly.</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>If your book was to be made into a movie, who are the celebrities that would star in it?</b></div><div><br /></div><div><b>TONIA: </b>Emma Hunton as Sam. Vivian Watson or a younger Rowan Blanchard as Clancy. Either a young Khleo Thomas or a young Jordan Fisher as Oscar. I don’t have a Shay.</div><div><br /></div><div><b>TARA: </b> August Maturo as Shay. A younger A disabled actor with a Jacob Tremblay vibe as Oscar.</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>Was the writing process different and what challenges do you face when writing in a new character?</b></div><div><b><br /></b></div><div><b>TARA</b>: As it's a collaboration, the process is a bit different than writing solo. There's more conferring. We are patient with each other's writing style. </div><div><br /></div><div><b>TONIA:</b> And for me, when writing a new character, it’s trying to differentiate new characters from each other, and from previous characters. I’ve written so many characters I don’t want them to seem one-note.</div><div><br /></div><div><b>TARA:</b> There's not too much that's challenging about writing new characters. It's exciting to get inside their heads!</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>Can you give us some insight into what makes Sam / Shay / Oscar / Clancy tick? (What motivates them?)</b></div><div><b><br /></b></div><div><b>TARA: </b>I think Sam is extremely motivated by her childhood wounds. She wants and needs to be the teacher she never had growing up. And becoming that teacher, while challenging, has helped her along her healing process.</div><div><br /></div><div><b>TONIA: </b>I’d agree with that for sure.</div><div><br /></div><div>I think Shay is extremely motivated by his own joy. He knows what brings him joy, he sets out to find those things and he isn’t bothered by what others might think of him, or the idea of being average.</div><div><br /></div><div><b>TARA:</b> Yes, I think Shay is definitely interest-motivated. A thing - or some part of a thing - has to hook him, or he'll just go through the motions.</div><div><br /></div><div>And Oscar is motivated by his sense of justice and freedom. </div><div><br /></div><div><b>TONIA:</b> Yes, I was going to say, I feel like Oscar is motivated especially by injustice. It pushes him to act.</div><div><br /></div><div>And I think Clancy is motivated by external validation and love. She gets good grades and works hard at all the things because she wants to know (and keep knowing) that her parents and people in her life love and value her.</div><div><b><br /></b></div><div><b>TARA:</b> Yes, and to take that further, I think she is motivated by fear of failure. And what she imagines failure might mean for her.</div><div><b><br /></b></div><div><b>TONIA:</b> For sure, yes.</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>What are the key challenges you’re facing when writing this book?</b></div><div><b><br /></b></div><div><b>TARA:</b> I think maybe just the pacing is a bit of a challenge. Ensuring that the POVs are showing something that's helpful to the overall story, even if there's not a lot happening actually. Keeping suspense but not drawing it out unnecessarily.</div><div><br /></div><div><b>TONIA:</b> Wow, that’s so interesting that so much thought goes into it for you. Writing sounds…almost cerebral for you.</div><div><b><br /></b></div><div><b>TARA:</b> Well, usually, I'm your plot / brainstorm / research human! So, I think it makes sense that my writing process reflects that. </div><div><br /></div><div><b>TONIA: </b>It does! It’s very different from my experience of writing, which Shay would probably call my “joy-warmth.” Because I literally just feel like I watch the characters in my head and transcribe what they’re doing as fast as I can so I don’t miss anything.</div><div><br /></div><div>But as far as challenges, I’d say pacing as well and just adjusting to being in sync with another person, and making sure I carry through the little details and nuances in your sections to my own so it reads like a whole work and not two separate stories.</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>What is the highlight of writing this book?</b></div><div><b><br /></b></div><div><b>TARA:</b> I mean, it isn't done yet, but I love writing with you and exploring new characters!</div><div><br /></div><div><b>TONIA:</b> Definitely, writing together!</div><div><br /></div><div>So far, I’ve really liked writing the scene where Oscar’s grief and fear about being separated from his wheelchair. A lot of the things I write about (that included) I’ve never seen represented, and it makes me really happy to get to bring them to the page, so to speak.</div><div><br /></div><div><b>TARA:</b> Is that the favorite POV section you've written so far? Do you have a favorite of mine?</div><div><br /></div><div><b>TONIA:</b> Yes, that's a favorite. (Another favorite was writing Pete and Shannon.) </div><div><br /></div><div>And as far as yours, I love the section quoted above – Oscar’s first POV. I also love when we first meet Shay because he’s so unique and his own character and I could just <i>see</i> him, and Clancy’s chapter all about losing her molar!</div><div><br /></div><div>What about you? Any favorites you’ve written? Anything stand out that I’ve written?</div><div><br /></div><div><b>TARA: </b>Yeah, the molar section was really solar. 😂 (That is to say that I think I liked writing that one most, so thank you for the idea about Clancy losing a tooth!) </div><div><br /></div><div>Another section that was an interesting challenge was Sandra. Because we've seen her from the outside, but never first-person! </div><div><br /></div><div><b>TONIA: </b>Can I jump in here and just say that I <i>loved</i> your Sandra section? You made me empathize with her. I felt I understood her on a deep level after reading your section from her POV, which is quite a feat since she’s only been seen through her family’s eyes so far.</div><div><br /></div><div><b>TARA:</b> Aw, wow, thank you! </div><div><br /></div><div>As for your sections, Shannon's was the most moving, hands-down. Like, maybe of the whole book so far. I can't imagine what she is going through.</div><div><br /></div><div>I also really empathized with Oscar's floor hockey yearning and then being shut down. Thank you for including that part. </div><div><b><br /></b></div><div><b>TONIA:</b> Thank <i>you</i> for being open to all my whims and things I want to explore. It was really fun talking about this with you.</div><div><br /></div><div><b>TARA</b>: Always!</div><div><br /></div><div style="text-align: center;"><div style="text-align: left;"><div style="text-align: center;">***</div></div><div><br /></div><div><i>Don't forget to connect on <b><a href="https://draft.blogger.com/blog/post/edit/4060372686205861977/2611864409909275077#">Facebook</a> / <a href="https://draft.blogger.com/blog/post/edit/4060372686205861977/2611864409909275077#">Twitter</a> / <a href="https://draft.blogger.com/blog/post/edit/4060372686205861977/2611864409909275077#">Instagram</a></b></i></div><div><i><br /></i></div><div><i><br /></i></div></div>Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.com2tag:blogger.com,1999:blog-4060372686205861977.post-70836294295258809552022-03-21T10:00:00.178-05:002022-03-21T10:00:00.190-05:00Interview Questions About My Books<div style="text-align: center;"><b>1,210 words</b></div><div style="text-align: center;"><b>9 minute read</b></div><div><br /></div><div>If you've met me (and even if you haven't) you probably know that I'm a huge fan of writing. I've written a ton. I'm currently co-writing story number 11 in a series of disability fiction with Tara. These are the second set of<b> <a href="http://lovewritinglife.com/author-interview-questions/">writing questions</a> </b>that can be found at the link. If you want to read the first set of writing questions: <b><a href="https://toniasays.blogspot.com/2021/10/interview-questions-about-writing.html">Interview Questions About Writing</a></b>, you can find those at the second link.</div><div><br /></div><div>I'm going to use these questions to talk mostly about my series, which is not traditionally published, but which I will link to further down so you can find it.</div><div><br /></div><div style="text-align: center;">***</div><div><b><br /></b></div><div><b>1. How many books have you written? Which is your favorite?</b></div><div><b><br /></b></div><div>Eleven in my current series. </div><div><br /></div><div>My favorite one is probably <b><a href="https://archiveofourown.org/works/34730284/chapters/86474167">Quite Alive</a></b> which is book number ten. It unpacked a lot of disability culture issues, like medical privacy and family PCAs and the nuances there. It also got a lot of negative feedback, like, weekly, so it makes me really happy and proud that I was able to persevere and finish it.</div><div><br /></div><div>But I also really love <b><a href="https://archiveofourown.org/works/27340552/chapters/66802144">Windows</a> </b>which is book number eight.<b> </b>Because telling a story of disabled kids just having fun at summer camp felt, in and of itself like an act of resistance. People so often want to see suffering and sadness when we speak about disabled stories, and I just wanted to tell a story of disabled kids being kids, making lasting friendships and dealing with everyday life, while also experiencing the life-changing atmosphere of a camp where for the first time in their lives, these kids, like so many of us, have found their people.</div><div><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhm6fO1Knm09RUFBYycfIEeodckl_13HrFS0DAZ-ApwC1BBYPN75IVg8uLTfLJtZP9an53_Fo0V39j_s43a9XXlDsImzFT0LzT9ZwkOlX-qFpG8hDYMEgiVzuPXsTHVW-AsZFA7c6_RmzkjRpaJzIhqaWim5n7_EELjDAgXXibIMIKBnA3VN3xtTpTH=s960" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="576" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEhm6fO1Knm09RUFBYycfIEeodckl_13HrFS0DAZ-ApwC1BBYPN75IVg8uLTfLJtZP9an53_Fo0V39j_s43a9XXlDsImzFT0LzT9ZwkOlX-qFpG8hDYMEgiVzuPXsTHVW-AsZFA7c6_RmzkjRpaJzIhqaWim5n7_EELjDAgXXibIMIKBnA3VN3xtTpTH=s320" width="192" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[Image: The cover of my eighth book, Windows, shows a blue sky and a wooden sign reading CAMP BRAVERY surrounded by children's handprints]</td></tr></tbody></table><br /><div><br /></div><div><br /></div><div>And I still think <b><a href="https://archiveofourown.org/works/18362831/chapters/43479380">Found</a></b> is so super important. If you haven't read Found yet, it is book five and it is so important, regarding disabled / nondisabled family dynamics, ableism and more. </div><div><br /></div><div style="text-align: center;">***</div><div><b><br /></b></div><div><b>2. What is the most surprising thing you discovered while writing your book(s)?</b></div><div><b><br /></b></div><div>I wrote probably the first three books in the series largely unaware of my own trauma background. It took until book four to really start unpacking my own trauma and understanding the extent of it that I live with on a daily basis.</div><div><br /></div><div style="text-align: center;">***</div><div><b><br /></b></div><div><b>3. Who is your favorite character?</b></div><div><b><br /></b></div><div>Since this question is asked twice, I'm going to answer it twice! It's so hard to narrow down to one favorite character because I love them all (and this will not be including book eleven because there's another set of questions for current work that Tara and I are tentatively planning to answer together.</div><div><br /></div><div>But the first person who comes to mind as a favorite character is Levi. We meet him in book four, <a href="https://archiveofourown.org/works/18352409/chapters/43451537" style="font-weight: bold;">Somewhere Inside</a>. He grows so much over the series. When we meet him he's so far in his trauma he feels like an entirely different person than who he grows up to be.</div><div><br /></div><div style="text-align: center;">***</div><div><b><br /></b></div><div><b>4. Do you have a favorite character that you have written? If so, who? And what makes them so special.</b></div><div><b><br /></b></div><div>Can I have a favorite family? Because I really love the Jensens. We meet Sarah in Found and Weston in Windows and Sam in Quite Alive. They're all amazing.</div><div><br /></div><div>I love Sarah because we literally never get to see a wheelchair using foster / adoptive mom who's taking in so-called "hard to place" kids. The narrative we usually see is children being removed from wheelchair using parent's custody, and I went completely against that for <a href="https://archiveofourown.org/works/30415389/chapters/74988120" style="font-weight: bold;">That Summer</a>, which is book nine. I ended up telling Weston's entire life story, including he and Sarah meeting and becoming family. We also don't often see a wheelchair-user who is unapologetic about her choices and her existence and her life. I love that about her.</div><div><br /></div><div>I love Weston because of his honesty. He's always as honest as he can be and I adore that about him. I loved learning more about him in That Summer. I love him because he makes me laugh. Because he's just a good kid, who so often got typed the opposite. He's a sweetheart and so vulnerable deep down.</div><div><br /></div><div>And I love Sam for a similar reason. She's gloriously blunt, and guarding such a soft heart. She has so much going on, and I feel so happy we got to go with her on her journey of self-discovery in Quite Alive and continue to follow her and a few of her students in the current story we're writing.</div><div><br /></div><div style="text-align: center;">***</div><div><b><br /></b></div><div><b>5. Where do you get your inspiration?</b></div><div><b><br /></b></div><div>From my life, from disability culture and from the media and TV shows I currently watch.</div><div><br /></div><div style="text-align: center;">***</div><div><b><br /></b></div><div><b>6. You’ve written poetry and disability fiction. Do you have a preference?</b></div><div><b><br /></b></div><div>Definitely disability fiction. All day long.</div><div><br /></div><div style="text-align: center;">***</div><div><b><br /></b></div><div><b>7. Is it easier to write poetry or disability fiction?</b></div><div><b><br /></b></div><div>Here's the thing. <b><a href="http://poem-a-day-tonia.blogspot.com/">Poetry</a></b> takes zero effort for me to produce most of the time. I put literal hours, and tears and stress into writing disability fiction. That is where my heart lies. That's what I wish was more widely read. And what I wish people really wanted to discuss with me, because I am here to discuss the Disuphere (pronounced "disappear") series always.</div><div><br /></div><div style="text-align: center;">***</div><div><b><br /></b></div><div><b>8. Where can readers purchase your books?</b></div><div><b><br /></b></div><div>Bonus! The<b> </b><a href="https://archiveofourown.org/series/1321766" style="font-weight: bold;">Disuphere series</a><b> </b>is free! If you have a Kindle you can even download it there! Just click the link to find it!</div><div><br /></div><div style="text-align: center;">***</div><div><b><br /></b></div><div><b>9. Where can readers find out more about you and your books?</b></div><div><b><br /></b></div><div>To read more about my series, <a href="https://toniasays.blogspot.com/2020/11/writing-disabled-characters-in-my-late.html" style="font-weight: bold;">click here</a>. To find out more about me click the <b><a href="https://toniasays.blogspot.com/search/label/ABOUT">ABOUT</a></b> tag on the upper right hand side of the blog.</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>10. Have any of your books been made into audiobooks? If so, what are the challenges in producing an audio book?</b></div><div><b><br /></b></div><div>No, only if you count reading out loud on Marco Polo to friends.</div><div><br /></div><div style="text-align: center;">***</div><div><b><br /></b></div><div><b>11. Which of your books were the most enjoyable to write?</b></div><div><b><br /></b></div><div>I'm really enjoying writing the current one (which you'll hear more about in the future) because I love writing with my sis!</div><div><br /></div><div style="text-align: center;">***</div><div><b><br /></b></div><div><b>12. Tell us about your first published book? What was the journey like?</b></div><div><b><br /></b></div><div>I first published a book of poetry in 2007. I was at a super different time in my life in almost every way. The book was full of mostly Christian poems. I followed it up getting published in a couple of anthologies in 2009 and 2010 and then got another book of poetry published in 2011.</div><div><br /></div><div>It was weird. I was (and remain) super shy so I was terrible about self-promotion. And I was at a way different point in my life where I craved validation from others.</div><div><br /></div><div>Now, I'm more committed to my work being accessible (and free) to as many people as possible. I understand making a living (especially disabled folks) and I don't fault anyone who does get published, but I don't believe it's right for me to charge money in order for people to enjoy something I created.</div><div><br /></div><div>Please read my series and come talk to me about it! Especially if you loved it or learned something new!</div><div><b><br /></b></div><div style="text-align: center;"><div style="text-align: left;"><div style="text-align: center;">***</div></div><div><br /></div><div><i>Don't forget to connect on <b><a href="https://draft.blogger.com/blog/post/edit/4060372686205861977/2611864409909275077#">Facebook</a> / <a href="https://draft.blogger.com/blog/post/edit/4060372686205861977/2611864409909275077#">Twitter</a> / <a href="https://draft.blogger.com/blog/post/edit/4060372686205861977/2611864409909275077#">Instagram</a></b></i></div><div><i><br /></i></div><div><i><br /></i></div></div>Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.com0tag:blogger.com,1999:blog-4060372686205861977.post-45376967377234254812022-03-14T10:00:00.023-05:002022-03-14T12:41:01.598-05:00Answering Your Burning Questions About CP<div style="text-align: center;"><b><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><div style="text-align: center;"><b>109 words</b></div><div style="text-align: center;"><b>1 minute read</b></div><br /><a href="https://blogger.googleusercontent.com/img/a/AVvXsEi6FrYBvkqOhVh-LpflRJB_bZHzWKyyCL489i9aNuT13XspP5AarLgplMFLZrrNP6VMEtr4fl4n9QUWNZB0SxJAOXceedFx41fjSRSG7CtPea2xrqdlKQkoBnRLIplztQe5trT5PqGkPIiA2Q3Zxguyuvq-0YCF1kdRdSQaqoR3LWy-i4llrNMuFgle=s960" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEi6FrYBvkqOhVh-LpflRJB_bZHzWKyyCL489i9aNuT13XspP5AarLgplMFLZrrNP6VMEtr4fl4n9QUWNZB0SxJAOXceedFx41fjSRSG7CtPea2xrqdlKQkoBnRLIplztQe5trT5PqGkPIiA2Q3Zxguyuvq-0YCF1kdRdSQaqoR3LWy-i4llrNMuFgle=s320" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[Me, modeling a hat and resting in bed.]</td></tr></tbody></table><br />***</b></div><div style="text-align: center;"><b><br /></b></div><div style="text-align: left;">Every March, it's Cerebral Palsy Awareness Month and every March I open myself up to questions about CP.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">This year, I actually got some!</div><div style="text-align: center;"><b><br /></b></div><div style="text-align: center;"><b>***</b></div><b><div><b><br /></b></div>How will my cerebral palsy will affect me later in life?</b><div><b><br /></b></div><div><b><a href="https://toniasays.blogspot.com/2021/03/10-things-no-one-tells-you-about-aging.html">10 Things No One Tells You About Aging With CP</a><br /></b><div><b><br /></b></div><div style="text-align: center;"><b>***</b></div><div><b><br /></b></div><div><b>How common is chronic pain with CP?</b></div></div><div><b><br /></b></div><div>A quick Google search says that 2/3 of adults with CP (or 66% of us) report chronic pain impacts us. (Myself included.)</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;">And that was it!</div><div style="text-align: left;"><br /></div><div style="text-align: left;">For more answers to CP questions check out this link:</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b><a href="https://toniasays.blogspot.com/2021/11/cerebral-palsy-faq.html">Cerebral Palsy FAQ</a></b> (by parents of kids with CP)</div><div style="text-align: left;"><br /></div><div style="text-align: center;"><div style="text-align: left;"><div style="text-align: center;"><br /></div><div style="text-align: center;">***</div></div><div><br /></div><div><i>Don't forget to connect on <b><a href="https://draft.blogger.com/blog/post/edit/4060372686205861977/2611864409909275077#">Facebook</a> / <a href="https://draft.blogger.com/blog/post/edit/4060372686205861977/2611864409909275077#">Twitter</a> / <a href="https://draft.blogger.com/blog/post/edit/4060372686205861977/2611864409909275077#">Instagram</a></b></i></div><div><i><br /></i></div><div><i><br /></i></div></div>Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.com0tag:blogger.com,1999:blog-4060372686205861977.post-8136093089673346192022-02-07T10:00:00.003-06:002022-02-09T20:45:34.055-06:00A-Z Bookish Questions<div>I got these from <b><a href="https://rustbeltgirlblog.wordpress.com/2021/04/22/a-z-bookish-questions/?fbclid=IwAR2L4S2P2Xg2SPwSqgdn-XY5nMYKJJu8G-XuqglRa4_m6JCKDpafJSSAJ3I">Rust Belt Girl</a> </b>because I'm a big reader, I'm always up for discussing books.</div><div><br /></div><div><b>AUTHOR YOU’VE READ THE MOST FROM:</b></div><div>Probably Ann M. Martin, to be honest.</div><div><br /></div><div><b>BEST SEQUEL EVER:</b></div><div>Catching Fire.</div><div><br /></div><div><b>CURRENTLY READING:</b></div><div>Know My Name - Chanel Miller, Mockingjay - Suzanne Collins, My Dark Vanessa - Kate Elizabeth Russell, Claudia and the Genius of Elm Street - Ann M. Martin</div><div><br /></div><div><b>DRINK OF CHOICE WHILE READING:</b></div><div>Espresso Iced Coffee</div><div><br /></div><div><br /></div><div><b>E-READER OR PHYSICAL BOOK:</b></div><div>Kindle!</div><div><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjcOQc41yQ7p9mNkkqy4sb7pOEMAUpparX99Oa9hkIe7LKyVdbVHU-tBtpZu78gao20ouB57tXT5Z-bNyF2wHZ5shI3FdwFbatQl0Tgn6FZ-1pnDJL1BQWp0BSNSHIILR-6h-Gr2W_YCRLsk71m_epRqOnfaxfTNGDEWcFY7OVAmDAuQo1azYfkkQ0L=s1560" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1560" data-original-width="1168" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEjcOQc41yQ7p9mNkkqy4sb7pOEMAUpparX99Oa9hkIe7LKyVdbVHU-tBtpZu78gao20ouB57tXT5Z-bNyF2wHZ5shI3FdwFbatQl0Tgn6FZ-1pnDJL1BQWp0BSNSHIILR-6h-Gr2W_YCRLsk71m_epRqOnfaxfTNGDEWcFY7OVAmDAuQo1azYfkkQ0L=s320" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[Tonia, contemplating a remote, a DVD and a copy of Little Women]</td></tr></tbody></table><br /><div><br /></div><div><br /></div><div><b>FICTIONAL CHARACTER YOU PROBABLY WOULD HAVE ACTUALLY DATED IN HIGH SCHOOL:</b></div><div><b><br /></b></div><div>No one, but I always wanted to be best friends with Kristy Thomas.</div><div><br /></div><div><br /></div><div><b>GLAD YOU GAVE THIS BOOK A CHANCE:</b></div><div><b><br /></b></div><div>Second Glance - Jodi Picoult</div><div><br /></div><div><br /></div><div><b>HIDDEN GEM BOOK:</b></div><div><b><br /></b></div><div>ROOM - Emma Donaghue</div><div><br /></div><div><br /></div><div><b>IMPORTANT MOMENT IN YOUR READING LIFE:</b></div><div><b><br /></b></div><div>Reading <u>The Kindness of Strangers</u> - Katrina Kittle</div><div><br /></div><div><br /></div><div><b>JUST FINISHED:</b></div><div><b><br /></b></div><div>Babysitter's SuperSpecial: Island Adventure</div><div><br /></div><div><b><br /></b></div><div><b>KIND OF BOOKS YOU WON’T READ:</b></div><div><br /></div><div>Romance.</div><div><br /></div><div><br /></div><div><b>LONGEST BOOK YOU READ:</b></div><div><b><br /></b></div><div>ROOTS - Alex Haley</div><div><br /></div><div><br /></div><div><b>MAJOR BOOK HANGOVER:</b></div><div><b><br /></b></div><div>Concrete Rose - Angie Thomas</div><div><b><br /></b></div><div><b><br /></b></div><div><b>NUMBER OF BOOKCASES YOU OWN:</b></div><div><b><br /></b></div><div>2</div><div><b><br /></b></div><div><b><br /></b></div><div><b>ONE BOOK YOU HAVE READ MULTIPLE TIMES:</b></div><div><b><br /></b></div><div>The Kindness of Strangers - Katrina Kittle</div><div><b><br /></b></div><div><b><br /></b></div><div><b>PREFERRED PLACE TO READ:</b></div><div><b><br /></b></div><div>Home / Outdoor patio.</div><div><b><br /></b></div><div><b><br /></b></div><div><b>QUOTES THAT INSPIRES YOU/GIVES YOU ALL THE FEELS FROM A BOOK YOU’VE READ:</b></div><div><b><br /></b></div><div>“But it’s okay that you think that. I think it takes a lot of energy and hard work to pretend things are perfect. I think I’d get really exhausted trying to pretend that. Sometimes it takes a lot of guts and bravery to admit that things aren’t perfect, that they’re not even okay."</div><div>― Katrina Kittle, The Kindness of Strangers</div><div><br /></div><div><div>“Words, for all they were flimsy and invisible, had great strength. They could be fortified as a castle wall and sharp as a foil. They could bite, slap, shock, wound. But unlike deeds, words couldn't really help you. No promise ever rescued a person; it was the carrying-through of it that brought about salvation.”</div><div>― Jodi Picoult, Second Glance</div></div><div><br /></div><div><div>“Scared is what you're feeling. Brave is what you're doing.”</div><div>― Emma Donoghue, Room</div></div><div><br /></div><div><b>READING REGRET:</b></div><div><b><br /></b></div><div><b><a href="https://threadreaderapp.com/thread/1306676059241353219.html">Roll With It - Jamie Sumner</a></b></div><div><b> </b></div><div><b><br /></b></div><div><b>SERIES YOU STARTED AND NEED TO FINISH (ALL BOOKS ARE OUT IN SERIES):</b></div><div><b><br /></b></div><div>Babysitter's Club</div><div><b><br /></b></div><div><b><br /></b></div><div><b>THREE OF YOUR ALL TIME FAVORITE BOOKS:</b></div><div><br /></div><div>The Kindness of Strangers - Katrina Kittle, Second Glance - Jodi Picoult, ROOM - Emma Donaghue</div><div><br /></div><div><br /></div><div><b>UNAPOLOGETIC FANGIRL FOR:</b></div><div><b><br /></b></div><div>Ann M. Martin</div><div><b><br /></b></div><div><b>WORST BOOK HABIT:</b></div><div><b><br /></b></div><div>Starting too many at once?</div><div><br /></div><div><br /></div><div><b>X MARKS THE SPOT: START AT THE TOP LEFT OF YOUR SHELF AND PICK THE 27TH BOOK:</b></div><div><b><br /></b></div><div>Lisa's War - Carol Matas</div><div><b><br /></b></div><div><b>YOUR LATEST BOOK PURCHASE:</b></div><div><b><br /></b></div><div>Downloaded all of the<b> <a href="https://archiveofourown.org/series/1321766">Disuphere series</a> </b>onto my Kindle!</div><div><br /></div><div><b>ZZZ-SNATCHER BOOK (LAST BOOK THAT KEPT YOU UP WAY LATE):</b></div><div><br /></div><div><b><a href="https://archiveofourown.org/works/34730284/chapters/86474167">Quite Alive</a></b></div>Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.com0tag:blogger.com,1999:blog-4060372686205861977.post-75414175209743358402022-02-01T11:45:00.000-06:002022-02-01T11:45:00.815-06:00Update<div style="text-align: center;"><b>503 words</b></div><div style="text-align: center;"><b>4 minute read</b></div><div><br /></div>I realized yesterday that it was Monday.<div><br /></div><div>And that it was the first Monday in a long time that I didn't post a blog. Unfortunately, that may become common.</div><div><br /></div><div>But I wanted to come by and post an update.</div><div><br /></div><div>Most of you know by now, November is usually my busiest month. This year, it seems, starting at Christmas, was my busiest time, and it's still continuing to be the case. Starting in January, Tara helped post the latest post in the 13 Reasons Why Summer Series about <b><a href="https://toniasays.blogspot.com/2022/01/13-reasons-why-alex-and-outbursts.html">Alex and Outbursts</a> </b>(which we love and are so proud of. Please check it out if you haven't already. And after that, K <a href="https://toniasays.blogspot.com/2022/01/unpacking-i-cant-interview-with-k.html"><b>whose "I Can't" interview was epic</b></a> graciously offered to ready and post the three remaining interviews. (If you missed hearing from <a href="https://toniasays.blogspot.com/2022/01/unpacking-i-cant-interview-with.html"><b>Anonymous</b></a> and <a href="https://toniasays.blogspot.com/2022/01/unpacking-i-cant-interview-with-kayla.html" style="font-weight: bold;">Kayla</a>, please check out their interviews as well.)</div><div><br /></div><div>This last month or so has meant a lot of things. But among them, it's meant much-needed and prioritized time with friends (on video chat.) I feel closer to my people than I've felt before. We also splurged (using money from present and past Amazon gift cards) to buy a portable DVD player (our combo DVD player / VCR quit working earlier this year.) And a Kindle, which I love. Especially now that I learned how to load my series of <b><a href="https://archiveofourown.org/series/1321766">disability fiction</a></b> right onto it. (Speaking of, Tara and I are also writing the 11th book in the series...together!</div><div><br /></div><div>Along with all the lighthearted stuff, we've done some serious stuff too. Getting boosted for The Thing was on our Unfortunate List of Things To Do, so that happened last Monday. The fatigue is real, friends, but the side effects of Pfizer were so much less than Moderna overall. (Curious about how vaccination will go with CP? Check out <b><a href="https://toniasays.blogspot.com/2021/06/10-things-to-know-when-getting.html">these</a></b> <b><a href="https://toniasays.blogspot.com/2021/07/10-more-things-to-know-when-getting.html">posts</a></b>.)</div><div><br /></div><div><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhTn9ZGrHB61LJVAKKgUdMgQLbWHDlphlc6KZQm2hYjlSv3GllLwv_bqf8Qn9IJ3B9U7HGltEtHAM1HNHclJ8PJwB0IP1nwhUMevQN9iE_gbmnhv5yHi45hV_6fWutLq6RIrjwjTiUg-zD2v206_IWErHlZV7Qf399ZEB_1bE_SsdIIgJwuAwsAvrGC=s359" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="359" data-original-width="356" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEhTn9ZGrHB61LJVAKKgUdMgQLbWHDlphlc6KZQm2hYjlSv3GllLwv_bqf8Qn9IJ3B9U7HGltEtHAM1HNHclJ8PJwB0IP1nwhUMevQN9iE_gbmnhv5yHi45hV_6fWutLq6RIrjwjTiUg-zD2v206_IWErHlZV7Qf399ZEB_1bE_SsdIIgJwuAwsAvrGC=s320" width="317" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[Getting boosted last Monday. You know I always need to flex.]</td></tr></tbody></table><br /><br /><div>Oh yeah. Tara gave me a haircut in December. I enjoy it a lot. My first in nearly two years. Gotta love at-home haircuts. (Yes, we are still quarantining, even though, yes, that is a local Target store where we had to go to get boosted.) Trust that other than the most necessary reasons, we've been staying home.</div><div><br /></div><div>To finish -- here's a thing that bring me joy lately. (Because you don't need to hear just how much I enjoy grocery store bread and bananas, that we're now able to get thanks to friends generosity and Amazon Fresh...LOL.)</div><div><br /></div><div><a href="https://www.youtube.com/watch?v=_mXRfmNVE24" style="font-weight: bold;">Colleen Vlogs</a> - This YouTube channel is everything. I linked one of my favorite videos. As a former NICU preemie, seeing this family with their preemies has been so healing for me. Also, Colleen is very open about her ADHD and makes neurodivergent things very normal and it's a joy. Her husband, Erik, is on one of our favorite shows, Good Trouble, and in addition to their adorable twins, they have a three-year-old with a passion for trucks that will blow your mind in the best way.</div><div><br /></div><div>Sending all the love to you, friends.</div><div style="text-align: center;"><br /></div><div style="text-align: center;"><div style="text-align: left;"><div style="text-align: center;">***</div></div><div><br /></div><div><i>Don't forget to connect on <b><a href="https://draft.blogger.com/blog/post/edit/4060372686205861977/2611864409909275077#">Facebook</a> / <a href="https://draft.blogger.com/blog/post/edit/4060372686205861977/2611864409909275077#">Twitter</a> / <a href="https://draft.blogger.com/blog/post/edit/4060372686205861977/2611864409909275077#">Instagram</a></b></i></div><div><i><br /></i></div><div><i><br /></i></div></div>Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.com0tag:blogger.com,1999:blog-4060372686205861977.post-45618870766259038192022-01-24T08:48:00.001-06:002022-02-05T21:05:39.709-06:00Unpacking "I Can't": An Interview with K<div style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><div style="text-align: center;"><span style="font-family: verdana; font-size: 11pt; font-weight: 700; white-space: pre-wrap;">1897 words</span></div><span style="font-family: verdana;"><div style="text-align: center;"><b style="font-size: 11pt; white-space: pre-wrap;">15 minute read</b></div></span></div><div style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><span style="font-family: verdana;"><span><span style="white-space: pre-wrap;"><b><br /></b></span></span>Our final installment in the "I Can't" series comes from my longtime friend K. Be sure to check out her last answer, too, for some practical tips on how to encourage children while still allowing and respecting "I can't." Without further ado, here's what she has to say:</span></div><div style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><span style="font-family: verdana;"><br /></span></div><div style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: center; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><span style="font-family: verdana;">***</span></div><div style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><span style="font-family: verdana;"><br /></span></div><div style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><span style="font-family: verdana;"><span style="font-size: 11pt; font-weight: 700; vertical-align: baseline;">Were you allowed to say “I can’t” when you were growing up?<br /></span><br /></span></div><div style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; letter-spacing: normal; line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><span style="font-family: verdana;"><b>K: </b>It<span style="font-size: 11pt; font-weight: 400; vertical-align: baseline;"> was definitely discouraged. My parents sometimes called me “Can Do Girl” because I said “I can do it” so often when someone offered help. That was a nickname I remember being proud of (and I love that my parents encouraged me to persevere!), but I also remember feeling some pressure, too—because independence was such a strong part of my identity, I felt some sense of failure when I genuinely couldn’t do something and needed to ask for help.</span></span></div><div style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><span style="font-family: verdana;"><br /></span></div><div style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><div style="text-align: center;"><span style="font-family: verdana; font-size: 11pt;">***</span></div><p style="font-size: 11pt; height: 11pt; line-height: 1.15; margin: 0px; padding: 0px;"><span style="font-family: verdana;"><span style="font-size: 11pt; vertical-align: baseline;"></span></span></p><span style="font-family: verdana;"><span style="font-size: 11pt; font-weight: 700; vertical-align: baseline;">What do you mean as a person with a disability when you say, “I can’t?” (Are there cultural nuances to the phrase that get misunderstood?)</span><br /><br /></span></div><div style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><span style="font-family: verdana;"><b>K: </b>When I say “I can’t,” I am not trying to be stubborn, lazy, or difficult. Typically, I am expressing that something is either <span style="text-decoration-line: underline; text-decoration-skip-ink: none;">physically impossible</span> for me or <span style="text-decoration-line: underline; text-decoration-skip-ink: none;">unsafe</span><span style="font-size: 11pt; vertical-align: baseline;">. And yes, I’ve found that this boundary is often lost on non-disabled people.</span></span><p style="font-size: 11pt; height: 11pt; line-height: 1.15; margin: 0px; padding: 0px;"><span style="font-family: verdana;"><span style="font-size: 11pt; vertical-align: baseline;"></span></span></p><span style="font-size: 11pt; vertical-align: baseline;"><span style="font-family: verdana;">Here’s one example of many: I went on a trip with my friends that involved a sailboat ride we had reserved and paid for in advance. When it was time for the sail, the captain said, “Okay! Getting into the boat will be the hardest part: All you have to do is get over this chain and then jump from the dock to the boat.” (Cue my ominous feelings!) The chain was very high, and then there was a space we’d have to jump over to get into the boat. Not a huge space, mind you, but if I missed (AND I WOULD MISS), I’d end up in the harbor. My friends and I all knew this task wasn’t feasible for me, but when I said, “I can’t do that,” the captain’s immediate response was, “It’s the only way on, so you have to.” At first, I think he assumed I was being needlessly difficult and entitled, because it took repeated insistences from my friends (“She literally can’t get on the boat.”) before he acquiesced, thought about it for about thirty seconds, and found a way to move his boat closer to the dock so at least I wouldn’t have to jump.</span></span><p style="font-size: 11pt; height: 11pt; line-height: 1.15; margin: 0px; padding: 0px;"><span style="font-family: verdana;"><span style="font-size: 11pt; vertical-align: baseline;"></span></span></p><span style="font-size: 11pt; vertical-align: baseline;"><span style="font-family: verdana;">I’m not excusing his initial resistance, but I think nondisabled people sometimes struggle to grasp the realities that people with disabilities face. If a nondisabled person told someone to jump thirty feet high and the reply was, “I can’t,” there would be a mutual understanding that the request was unreasonable. But when a nondisabled person asks a disabled person to do something that tends to be easy for nondisabled people—say, taking independent steps or jumping a small distance between a dock and a boat—a genuine “I can’t” is often perceived as obstinance.</span></span><p style="font-size: 11pt; height: 11pt; line-height: 1.15; margin: 0px; padding: 0px;"><span style="font-family: verdana;"><span style="font-size: 11pt; vertical-align: baseline;"></span></span></p><span style="font-size: 11pt; vertical-align: baseline;"><span style="font-family: verdana;">The other nuance that people sometimes miss is that our abilities can change from year to year, day to day, or even moment to moment. Just because I could do something easily last week doesn’t necessarily mean that I can easily do it today. Likewise, maybe something that used to be impossible for me is now possible. Many factors can play a role here, including environmental factors (temperature, crowds, accessibility of an area), physical factors (injuries, surgeries, illnesses, fatigue, growth spurts, aging), and even emotional factors (nervousness, excitement).</span></span></div><div style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><span style="font-family: verdana;"><br /></span></div><div style="line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; widows: 2;"><div style="text-align: center;"><span style="font-family: verdana; font-size: 14.6667px; text-align: left;">***</span></div><div style="text-align: center;"><span style="font-family: verdana; font-size: 14.6667px; text-align: left;"><br /></span></div><div style="text-align: center;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEh28iD5oDzHx50kTH90OuNuYTDgJnRST3lSFjJJJRg57zeXvzeEsK7AhKhgHaFcWwh73ksSHSIkIdPXXaRJcLfLEzuhHtO-YeYkO3I3vOsWXGX8wt0bqHEvEq20GwXFkq2lbbzOL2s3KUbTxMgat71L8bCuquPVhXNo0Ct0UGHJzQAW4a3jdZmX8LEPKg=s356" style="margin-left: auto; margin-right: auto;"><img alt="K at about 5 years old. She is smiling and wearing a straw hat." border="0" data-original-height="254" data-original-width="356" height="228" src="https://blogger.googleusercontent.com/img/a/AVvXsEh28iD5oDzHx50kTH90OuNuYTDgJnRST3lSFjJJJRg57zeXvzeEsK7AhKhgHaFcWwh73ksSHSIkIdPXXaRJcLfLEzuhHtO-YeYkO3I3vOsWXGX8wt0bqHEvEq20GwXFkq2lbbzOL2s3KUbTxMgat71L8bCuquPVhXNo0Ct0UGHJzQAW4a3jdZmX8LEPKg=w320-h228" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[K smiling for the camera at about five years old.]</td></tr></tbody></table><div style="text-align: center;"><br /></div>***<br /><span style="font-family: verdana; font-size: 14.6667px; text-align: left;"><br /></span></div><p style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; height: 11pt; letter-spacing: normal; line-height: 1.15; margin: 0px; padding: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: verdana;"><span style="font-size: 11pt; vertical-align: baseline;"></span></span></p><span style="-webkit-text-stroke-width: 0px; color: black; font-family: verdana; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-size: 11pt; font-weight: 700; vertical-align: baseline;">What risks or vulnerabilities exist in saying “I can’t” as a disabled person?</span><br /><br /></span></div><div style="line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; widows: 2;"><span style="-webkit-text-stroke-width: 0px; color: black; font-family: verdana; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; text-transform: none; white-space: normal; word-spacing: 0px;"><b>K: </b>Th<span style="font-size: 11pt; vertical-align: baseline;">ere’s often the risk that someone won’t believe us, as I illustrated with my earlier anecdote about the boat trip. Sometimes our attempts to say “I can’t” are deemed invalid by a nondisabled person, either because they assume we’re being stubborn or not trying hard enough or they think we just need to believe in ourselves more. Sometimes, a well-meaning person will say something like, “Yes you can! You’ve never been one to back away from a challenge!” Occasionally I really do just need a little encouragement and assistance to accomplish something, but more often than not, this reaction is counterproductive for me. By nature I’m a very determined person, and I don’t say “I can’t” lightly. I appreciate when people believe in me, but when I say that I can’t do something, I also need them to believe me.</span></span></div><div style="line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; widows: 2;"><span style="font-family: verdana;"><span style="font-size: 14.6667px;"><br /></span></span></div><div style="line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; widows: 2;"><div style="text-align: center;"><span style="font-family: verdana; font-size: 14.6667px; text-align: left;">***</span></div><p style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; height: 11pt; letter-spacing: normal; line-height: 1.15; margin: 0px; padding: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: verdana;"><span style="font-size: 11pt; vertical-align: baseline;"></span></span></p><span style="-webkit-text-stroke-width: 0px; color: black; font-family: verdana; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-size: 11pt; font-weight: 700; vertical-align: baseline;">Do you have any memories of saying or wanting to say, “I can’t?” How was this limit received?</span><br /><span style="font-size: 11pt; vertical-align: baseline;"><br /></span></span></div><div style="line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; widows: 2;"><span style="-webkit-text-stroke-width: 0px; color: black; font-family: verdana; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-size: 11pt; vertical-align: baseline;"><b>K: </b>Yes. It has often been received negatively. Here’s one example: Once, I was on a walk with my mom and she kept asking me to stop walking with my knees knocking together. I kept trying to do as she asked, but my legs just wouldn’t cooperate. My mom is typically very understanding and patient, but this time she was getting increasingly frustrated every time I said, “I can’t.” She kept saying, “It’s EASY, just move your legs apart like THIS!” and demonstrating, and by the end of the walk I was nearly in tears. I truly was trying to do what she asked of me; my body just wouldn’t listen.</span></span></div><div style="line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; widows: 2;"><span style="font-family: verdana;"><span style="font-size: 14.6667px;"><br /></span></span></div><div style="line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; widows: 2;"><div style="text-align: center;"><span style="font-family: verdana; font-size: 14.6667px;">***</span></div><p style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; height: 11pt; letter-spacing: normal; line-height: 1.15; margin: 0px; padding: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: verdana;"><span style="font-size: 11pt; font-weight: 700; vertical-align: baseline;"></span></span></p><span style="-webkit-text-stroke-width: 0px; color: black; font-family: verdana; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-size: 11pt; font-weight: 700; vertical-align: baseline;">What message was conveyed to you because of moments like this?</span></span></div><div style="line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; widows: 2;"><span style="-webkit-text-stroke-width: 0px; color: black; font-family: verdana; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; letter-spacing: normal; text-transform: none; white-space: normal; word-spacing: 0px;"><b><br /></b><span style="font-size: 11pt; font-weight: 400; vertical-align: baseline;"><b>K: </b>I felt incredibly helpless in that moment. I realized then that I was doing everything I could and it still wasn’t enough, and there was nothing I could do to convey to her what it was like to have CP. I felt alone.</span></span><p style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; height: 11pt; letter-spacing: normal; line-height: 1.15; margin: 0px; padding: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: verdana;"><span style="font-size: 11pt; vertical-align: baseline;"></span></span></p><span style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;"><span style="font-family: verdana;">But the morning after our walk, my mom and I were in the kitchen together and the TV was on, and a news segment came on about an actor and dancer with CP named Gregg Mozgala. He said something along the lines of, “It’s hard to understand what having CP is like if you don’t have CP. It’s like having a body that doesn’t always listen.”</span></span><p style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; height: 11pt; letter-spacing: normal; line-height: 1.15; margin: 0px; padding: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: verdana;"><span style="font-size: 11pt; vertical-align: baseline;"></span></span></p><span style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;"><span style="font-family: verdana;">I didn’t even realize that my mom was paying attention to that segment too, but right after it ended she came over to me and said, “He just said the same thing that you told me yesterday. I’m sorry I got upset with you. I didn’t understand.”</span></span><p style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; height: 11pt; letter-spacing: normal; line-height: 1.15; margin: 0px; padding: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: verdana;"><span style="font-size: 11pt; vertical-align: baseline;"></span></span></p><span style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;"><span style="font-family: verdana;">I wanted to cry all over again. It was so validating to hear someone else with CP put words to my experiences, and it meant a lot to me that my mom apologized and reflected on our situation. I think sometimes it’s hard for parents, too—my mom is amazing, and I knew she only wanted to help me, but my difficulties were getting lost in translation because her body doesn’t move like mine. Our bodies speak different languages.</span></span></div><div style="line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; widows: 2;"><span style="font-family: verdana;"><span style="font-size: 14.6667px;"><br /></span></span></div><div style="line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; widows: 2;"><div style="text-align: center;"><span style="font-family: verdana; font-size: 14.6667px;">***</span></div><p style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; height: 11pt; letter-spacing: normal; line-height: 1.15; margin: 0px; padding: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: verdana;"><span style="font-size: 11pt; font-weight: 700; vertical-align: baseline;"></span></span></p><span style="-webkit-text-stroke-width: 0px; color: black; font-family: verdana; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-size: 11pt; font-weight: 700; vertical-align: baseline;">Have your experiences contributed to the way you set or struggle to set boundaries?</span></span></div><div style="line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; widows: 2;"><span style="-webkit-text-stroke-width: 0px; color: black; font-family: verdana; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; letter-spacing: normal; text-transform: none; white-space: normal; word-spacing: 0px;"><b><br /></b><span style="font-size: 11pt; font-weight: 400; vertical-align: baseline;"><b>K: </b>Absolutely. By nature I’m extremely tenacious and also a people pleaser, so I’m sure those qualities affected my ability to set boundaries as well. But I’m working on it. I spent so much of my life thinking that the phrase “I can’t” was a sign of failure and defeat, and I’m finding that this mindset is damaging. Sometimes “I can’t” is a sign of courage—a sign that I’m finally learning to listen to my body, to push myself when needed but also to set healthy boundaries.</span><br /><span style="font-size: 11pt; font-weight: 400; vertical-align: baseline;">I still struggle with expressing and maintaining boundaries, but connecting with the disability community has helped tremendously. I hope it helps parents, too, to hear from adults who have a disability like their child’s. Parents may never know exactly what it’s like to have their child’s disability, but they can start to build that empathy and understanding by truly listening to their child and by seeking out other firsthand perspectives.</span></span><p style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; height: 11pt; letter-spacing: normal; line-height: 1.15; margin: 0px; padding: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: verdana;"><span style="font-size: 11pt; vertical-align: baseline;"></span></span></p><p style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; height: 11pt; letter-spacing: normal; line-height: 1.15; margin: 0px; padding: 0px; text-align: center; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: verdana; text-align: left;">***</span></p><p style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; height: 11pt; letter-spacing: normal; line-height: 1.15; margin: 0px; padding: 0px; text-align: center; text-transform: none; white-space: normal; word-spacing: 0px;"><br /></p><span style="-webkit-text-stroke-width: 0px; color: black; font-family: verdana; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-size: 11pt; font-weight: 700; vertical-align: baseline;">Anything more you’d like to add?</span></span></div><div style="line-height: 1.15; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; text-indent: 0px; widows: 2;"><span style="-webkit-text-stroke-width: 0px; color: black; font-family: verdana; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; letter-spacing: normal; text-transform: none; white-space: normal; word-spacing: 0px;"><b><br /></b><span style="font-size: 11pt; font-weight: 400; vertical-align: baseline;"><b>K: </b>Some parents of children with disabilities might wonder how to foster resilience and perseverance in their children while still allowing and respecting “I can’t.”</span></span><p style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; height: 11pt; letter-spacing: normal; line-height: 1.15; margin: 0px; padding: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: verdana;"><span style="font-size: 11pt; vertical-align: baseline;"></span></span></p><span style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;"><span style="font-family: verdana;">First, I just want to acknowledge that productive struggle is important; sometimes we all get frustrated and feel like giving up, and at times we need to push through these feelings and keep trying. Many of my proudest accomplishments were only possible because I persevered even when I wanted to stop, even when I thought, “I can’t, I can’t, I can’t.” And sometimes I did need a push from other people, including my parents. I’m NOT saying that parents should say, “Okay, never mind” whenever their child says, “I can’t.” In my opinion, they would be doing their child a disservice. My family believed in me and pressed me to be the best I could be, and that was a wonderful gift. Perseverance has taken me far in life, and that’s partly because I learned from a young age not to shy away from challenges.</span></span><p style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; height: 11pt; letter-spacing: normal; line-height: 1.15; margin: 0px; padding: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: verdana;"><span style="font-size: 11pt; vertical-align: baseline;"></span></span></p><span style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;"><span style="font-family: verdana;">But if your child says, “I can’t,” please don’t shut them down. Resist the urge to reply, “We don’t say those words.” In some situations, simply accept their response and move on.</span></span><p style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; height: 11pt; letter-spacing: normal; line-height: 1.15; margin: 0px; padding: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: verdana;"><span style="font-size: 11pt; vertical-align: baseline;"></span></span></p><span style="-webkit-text-stroke-width: 0px; color: black; font-family: verdana; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; text-transform: none; white-space: normal; word-spacing: 0px;">Other situations might require more follow up. If they’re emotional, acknowledge the emotions they’re feeling (e.g., fear, frustration, sadness, anger), and help them name those emotions and identify why they might be feeling that way. It’s often incredibly difficult to admit that we can’t do something, especially when it’s a task we watch our peers do easily. And if they say “I can’t” in a defeated way, you can validate their feelings and then help them reframe their way of thinking with a qualifier: “I can’t do this <span style="font-style: italic;">yet</span>,” or “I can’t do this<span style="font-style: italic;"> right now</span><span style="font-size: 11pt; vertical-align: baseline;">,” or “I can’t do X, and that’s okay, but I’m really good at X, Y, and Z!” This reframing helps me sometimes when I feel down about something I’m not able to do because of my disability.</span></span><p style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; height: 11pt; letter-spacing: normal; line-height: 1.15; margin: 0px; padding: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: verdana;"><span style="font-size: 11pt; vertical-align: baseline;"></span></span></p><span style="-webkit-text-stroke-width: 0px; color: black; font-family: verdana; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; text-transform: none; white-space: normal; word-spacing: 0px;">Then take steps to help them manage the situation. If your child is overwhelmed, they may just need a break, or they may need help breaking a large task into smaller, more manageable pieces. Depending on the situation and your child’s age and ability, you might also consider working together with them to find a way to adapt the activity so they <span style="font-style: italic;">can </span><span style="font-size: 11pt; vertical-align: baseline;">do it. If your child is able and willing to suggest adaptations, this can be an incredibly empowering process for them: It allows them to gain some control in a challenging situation, and it helps them develop creative coping skills that will serve them well throughout life. Also, a little bit of help (combined with patience and encouragement) can go a long way. Sometimes we just need more time and support to master a task, and it’s wonderful when others acknowledge that and give us the tools and space we need.</span></span><p style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; height: 11pt; letter-spacing: normal; line-height: 1.15; margin: 0px; padding: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: verdana;"><span style="font-size: 11pt; vertical-align: baseline;"></span></span></p><span style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;"><span style="font-family: verdana;">Encourage perseverance with positive reinforcement. Remind your child often that they are kind, smart, talented, and strong. Celebrate with them when they accomplish a goal they have been working toward. Make failure safe by encouraging them even when they struggle, and remind them that they learn and grow every time they try. When they persevere, lift them up with comments like, “I love how you kept trying and trying until you got it,” and “Wow! You worked so hard to do that. I know it wasn’t easy, but you did it! You are amazing,” and “You are such a hard worker!”</span></span><p style="-webkit-text-stroke-width: 0px; color: black; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; height: 11pt; letter-spacing: normal; line-height: 1.15; margin: 0px; padding: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: verdana;"><span style="font-size: 11pt; vertical-align: baseline;"></span></span></p><span style="-webkit-text-stroke-width: 0px; color: black; font-family: verdana; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; text-transform: none; white-space: normal; word-spacing: 0px;">And encourage healthy boundary setting with positive reinforcement too. In some situations, that may even mean praising your child for saying “I can’t” and encouraging them to seek help when they need it. “I can’t” is not a universally negative statement. Boundary setting is essential for their physical and emotional safety and wellbeing, and it is a skill that will serve them well throughout their life.</span></div><p style="text-align: left;"></p><div></div><p></p>Khttp://www.blogger.com/profile/16465476805924801942noreply@blogger.com0tag:blogger.com,1999:blog-4060372686205861977.post-41421220837547452612022-01-17T09:00:00.012-06:002022-02-05T21:05:25.629-06:00Unpacking "I Can't": An Interview with Anonymous<p style="text-align: center;"><span style="font-family: verdana;"><span style="font-weight: 700; white-space: pre-wrap;">799 words</span></span></p><p style="text-align: center;"><span style="font-family: verdana;"><span style="white-space: pre-wrap;"><b>6 minute read</b></span></span></p><p style="text-align: left;"><span style="font-family: verdana;"><span style="white-space: pre-wrap;">This week's "I Can't" post comes with no name but lots and lots of wisdom! I found myself nodding along to every answer, and I especially loved the response to the last question. </span></span></p><p style="text-align: left;"><span style="font-family: verdana;"><span style="white-space: pre-wrap;">Here's what this week's guest has to say:</span></span></p><p style="text-align: left;"><span style="font-family: verdana;"><span style="white-space: pre-wrap;"><br /></span></span></p><p style="text-align: center;"><span style="font-family: verdana;"><span style="white-space: pre-wrap;">***</span></span></p><p style="text-align: center;"><span style="font-family: verdana;"><span style="white-space: pre-wrap;"><br /></span></span></p><p><span style="font-family: verdana;"><span style="font-weight: 700; white-space: pre-wrap;">Were you allowed to say “I can’t” when you were growing up?</span></span></p><span id="docs-internal-guid-e20af0ae-7fff-8e5c-f233-40cd1b601412"><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">ANON: </span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> Generally, no. “I can’t” was treated as a swear word around me by doctors and physical therapists and other adults. From a young age, I was taught those words were not allowed to the point where I was reprimanded immediately or ignored for using them. </span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">***</span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">What do </span><span style="font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">you</span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"> mean when you say, “I can’t?” (Are there cultural nuances to the phrase that get misunderstood?) </span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><br /><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">ANON: </span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> Saying “I can’t” I was asking for help. </span><span style="font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">I can’t do this alone. I need help. </span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">It was typically said from a place of anxiety and intense fear. But adults didn’t understand. They viewed my “I can’t” as defiance, a refusal to do the thing that was asked. I was often scolded for “not even trying” or given a flat “yes you can” in response. </span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">***</span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">What risks or vulnerabilities exist in saying “I can’t” as a disabled person?</span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">ANON: </span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> Saying “I can’t” you are generally risking the person’s anger or possible punishment, even manipulation or other forms of emotional abuse. If you are expressing a need for help or accommodation, within that “I can’t” you are at their mercy hoping they will provide the assistance you need. </span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">***</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhNvfOlpQ86v3sGEUfkzZ77AyqXqPXAcHnzpOvwfG4EWv47gLPL2hdDQN5kCCI50ByYTHOE2LuyOyjGdYOPfIjefJ3-Iwz7druYkSNtXekasdKRxTbHDgjJk6fQQACaFAESzAJim4QMsddBRjTOXE7KrJ5lV6XoLA3FitVjNPut2J4TT1CeL7qXVh1XaA=s600" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="[A self-portrait of Anonymous. She is smiling slightly and has brown hair and glasses.]" border="0" data-original-height="600" data-original-width="600" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEhNvfOlpQ86v3sGEUfkzZ77AyqXqPXAcHnzpOvwfG4EWv47gLPL2hdDQN5kCCI50ByYTHOE2LuyOyjGdYOPfIjefJ3-Iwz7druYkSNtXekasdKRxTbHDgjJk6fQQACaFAESzAJim4QMsddBRjTOXE7KrJ5lV6XoLA3FitVjNPut2J4TT1CeL7qXVh1XaA=w320-h320" title="[A self-portrait of Anonymous. She is smiling slightly and has brown hair and glasses.]" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[A self-portrait of Anonymous. She is smiling slightly and has brown hair and glasses. She is holding a pencil.]</td></tr></tbody></table></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">***</span></span></div><p></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Do you have any memories of saying or wanting to say, “I can’t?” How was this limit received? </span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><br /></span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><br /></span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">ANON: </span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> I have several, but one stands out. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">I was in adaptive horseback riding. One day as I was mounting my horse, my foot got stuck behind the saddle as I went to swing my leg around the horse to get on. I tried for several moments to free myself, clinging to the reins and horn for balance, before desperately saying,</span><span style="font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> “I can’t get up.” </span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">to my helpers. Everything stopped. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span><span style="font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">What did you just say? </span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">One of them shot back at me. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">I tried to explain that I couldn’t get my leg around. That my foot was wedged behind the saddle. That it was impossible for me to get it out on my own. That I’d already tried before saying </span><span style="font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">“I can’t.” </span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">So what do you say instead? </span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">“Please help me!” </span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">I managed to beg. </span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Once they had freed me and I was safely up on my horse I was praised for using the “correct words” and asking for help rather than saying </span><span style="font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">“I can’t.” </span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">See you can do it! </span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">They praised me.</span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">But the thing is? I didn’t do it. It was only because of them that I had gotten my foot free. I hadn’t done it myself. They’d forced me to plead and ask nicely for assistance, in a way that made them comfortable, rather than accept what I was already communicating by using </span><span style="font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">“I can’t”</span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> </span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">Hearing this message from such a young age, it was easy to overgeneralize and feel like I was never allowed to say “I can’t” or disagree in any situation. If someone asked me to do something, I was supposed to do it, and do it with a smile. I was taught to people-please. </span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">***</span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">What does it mean when disabled people grow up unable to express an inability to do something?</span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">ANON: </span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> Disabled people are taught in so many little ways that our bodies do not belong to us. That we are not allowed to have boundaries or to say no to the people that “know best for us.” </span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">Unfortunately, this is directly linked to compliance culture and more times than not leads to assault and abuse of disabled children and adults who were never taught boundaries or consent in the first place.</span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">*** </span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">Have your experiences contributed to the way you set or struggle to set boundaries?</span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">ANON: </span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> I do struggle setting healthy boundaries still today. Not only because I was never taught how, but the internal messages I received as a child were that having limits was not allowed.</span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">***</span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: verdana;">Anything more you’d like to add?</span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">ANON: </span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> Saying I can’t is more than just defiance or reluctance to try. “I can’t” is generally the first word - sometimes the only word - we have children to express a boundary or a limit, physical or otherwise. </span></span></p><span style="font-family: verdana;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">All children need to be able to say no, stop, or “I can’t” when they feel uncomfortable. It is the adult’s job to figure out why and not just assume. </span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">This is especially true for disabled children who are much more likely to experience assault and abuse because of their disability. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-family: verdana;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">***</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: verdana;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-family: verdana;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><i>Want more? Here's Anon's blog post about this topic: </i></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-family: verdana;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-family: verdana; white-space: pre-wrap;"><a href="https://notdifferent-justme.tumblr.com/post/182584553256/i-dont-know-how-to-say-no-im-afraid-to-say"><b>I Don’t Know How to Say No</b></a> </span></p><div><span style="font-family: Arial; font-size: 14pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div></span>Khttp://www.blogger.com/profile/16465476805924801942noreply@blogger.com0tag:blogger.com,1999:blog-4060372686205861977.post-43660337823745466932022-01-10T09:00:00.017-06:002022-02-05T21:05:13.198-06:00Unpacking "I Can't": An Interview with Kayla<p style="text-align: center;"><span style="white-space: pre-wrap;"><span style="font-family: verdana;"><b>721 words</b></span></span></p><p style="text-align: center;"><span style="white-space: pre-wrap;"><span style="font-family: verdana;"><b>5.5 minute read</b></span></span></p><p><span style="white-space: pre-wrap;"><span style="font-family: verdana;">It's time for yet another installment in the "I Can't" Series! This week, we're hearing from Kayla. I really loved her insights!</span></span></p><p><span style="font-family: verdana;"><span style="white-space: pre-wrap;">Here's what she has to say:</span><span style="white-space: pre-wrap;"> </span></span></p><p><span style="font-family: verdana;"><span style="white-space: pre-wrap;"><br /></span></span></p><p style="text-align: center;"><span style="font-family: verdana;"><span style="white-space: pre-wrap;">***</span></span></p><p><span style="font-family: verdana;"><span style="white-space: pre-wrap;"><br /></span></span></p><span id="docs-internal-guid-fe5854ea-7fff-f0b9-8243-5266a6e1ef30"><span style="font-family: verdana;"><div><b>Were you allowed to say “I can’t” when you were growing up?</b></div><div><br /></div><div>KAYLA: Actually, yes, but my grandma definitely had to tell other adults in my life to respect when I said it. “She knows her limits” is something I remember her having to insist more than once when I was a kid.</div><div><br /></div><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">***</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">What do </span><span style="font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">you</span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"> mean as a person with a disability when you say, “I can’t?” (Are there cultural nuances to the phrase that get misunderstood?)</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">KAYLA:</span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> For me, it’s definitely fluid. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">There are some things I objectively can’t do (like running, for example). </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">There are other things that I can sometimes do and sometimes can’t. I can get into my sister’s truck, for example, but I can’t get into every single truck, because some of them are way too high off the ground. It’s also dependent on energy levels. If I’ve worn myself out that day, something I could do on a good energy day might become something I can’t do. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Finally, there are some things that maybe I could do in theory that I will say I can’t do, because I don’t believe the possibility for injury is worth it. I can’t do this safely should be just as valid as something I can’t do at all.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">***</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">What risks or vulnerabilities exist in saying “I can’t” as a disabled person?</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">KAYLA:</span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> Not being believed for SURE. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">On numerous occasions as an adult, it has been assumed that I don’t want to try when I say that I can’t, instead of my word being taken at face value. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">People want me to try it their way instead of just trusting that I know my own body, and what I can and can’t do. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">At worst, when it turns out that I’m right and I can’t do a particular physical task that’s been asked of me, it’s assumed that I’m not trying hard enough. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">This is very frustrating and invalidating.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">***</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><br /></p></span></span><div><span><span style="font-family: verdana;"><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Do you have any memories of saying or wanting to say, “I can’t?” How was this limit received? </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">KAYLA: </span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Weirdly enough, my limits regarding “I can’t” seem to be received better by people who know me less well. Some people in life that I’m close with have actually told me that they’ll “forget I’m disabled” because there are a lot of tasks that I have managed to figure out creative solutions for. In my experience, friends hold space for the boundary that is “I can’t” in a way that certain family members do not.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">[There was a time] when I was pushed too far recovering from surgery. My grandma wasn’t there to advocate for me. I KNEW I was gonna fall but the therapist made me do it anyway even after arguing with her. Sure as sh*t, I fell and she didn’t catch me. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Adults think they know better than kids when it comes to their OWN LIMITS and that is so freaking awful.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">***</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">What message was conveyed to you because of moments like this? </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">KAYLA:</span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> In a way it’s like another form of infantilization. Like, “Actually, I know your abilities better than you”.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><br /></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">***</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjM8LZ92FVLTo-tVOWa_2wCEluDD-C8BdgJRT-U6F-io1grL29nj_gmwtR_bkLFib1zmq4ovbko13hu7Q54EFZdUMc14JvhFDe_ytqFbHTfkcnvGU_lP0upy33LVsvtkVeKNBQADUD6WBhbVqYXc2duKtED__7Z04WgE6_ci5CinaAT2pq1t7j-hqORqw=s4032" style="margin-left: auto; margin-right: auto;"><img alt="[Kayla (right) as a young child, posing with her mom (left). Kayla is smiling, and they're holding a stuffed animal between them.]" border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEjM8LZ92FVLTo-tVOWa_2wCEluDD-C8BdgJRT-U6F-io1grL29nj_gmwtR_bkLFib1zmq4ovbko13hu7Q54EFZdUMc14JvhFDe_ytqFbHTfkcnvGU_lP0upy33LVsvtkVeKNBQADUD6WBhbVqYXc2duKtED__7Z04WgE6_ci5CinaAT2pq1t7j-hqORqw=w240-h320" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[Kayla (right) as a young child, posing with her grandma (left).<br />Kayla is smiling, and she and her grandma are holding a stuffed animal between them.]</td></tr></tbody></table><div style="text-align: center;"><br /></div><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"></span></p><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Have your experiences contributed to the way you set or struggle to set boundaries?</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">KAYLA:</span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> For sure. Now that I’m older and have found more people that are also disabled, it is easier to recognize and call out a lack of respect for my boundaries regarding what I can and can’t do as what it is: ableism. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Ableism looks like a lot of things, and recognizing it has been so helpful for my growth and development as a person. I’m disabled, and I’m allowed to have boundaries without being questioned or disbelieved. If people don’t respect that, they are being ableist. I am not being difficult, not trying, whatever negative nonsense is being suggested about me. Other people’s ableism isn’t my fault.</span></p></span></span></div>Khttp://www.blogger.com/profile/16465476805924801942noreply@blogger.com0tag:blogger.com,1999:blog-4060372686205861977.post-39663777054354971262022-01-03T10:00:00.000-06:002022-01-03T10:00:00.195-06:0013 Reasons Why: Alex and Outbursts<div style="text-align: center;"><b>2,252 words</b></div><div style="text-align: center;"><b>17 minute read</b></div><div style="text-align: center;"><b><br /></b></div><div style="text-align: center;"><b>TW: GIF warning</b></div><div style="text-align: center;"><b>mention of emotional abuse</b></div><div style="text-align: center;"><b><br /></b></div><div style="text-align: center;"><b>Spoilers for Seasons 2 through 4 of 13 Reasons Why</b></div><div style="text-align: center;"><b><br /></b></div><div style="text-align: center;"><b><br /></b></div><div style="text-align: center;"><b>***</b></div><div><br /></div><div>We’re back! </div><div><br /></div><div>Yes, we know that this was technically our Summer Blog Post Series, but we needed to take a break, to come back to the last few topics fresh! Thanks for your patience! (Shoutout to Heather for your recent feedback - it really helped!)</div><div><br /></div><div>This week, we will be discussing the nuanced representation of outbursts and brain injury in 13 Reasons Why, and why this representation matters to us on a personal level. </div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>We had an interesting conversation while discussing ideas for this post where we remembered an interaction we had after Tara’s brain injury. For context, this was the late 90s. There was no media representation - no Alex Standalls to refer to - in order to get insight into this specific experience – what some might call an “outburst.” What do we want to share about this time?</b></div><div><br /></div><div><b>TONIA:</b> In the months after your brain injury, I offered to help you with your homework. At 16, my understanding of what happened to you was quite simplistic. I knew you struggled in the areas I could see (reading and writing, to name a couple.) So, I read questions for you and asked what you wanted the answer to be. You kept saying: “I don’t know.”</div><div><br /></div><div><b>TARA:</b> And I think I kept getting more and more frustrated each time I said it, right?</div><div><br /></div><div><b>TONIA:</b> Probably! And I didn’t take those cues…</div><div><br /></div><div><b>TARA: </b>And at this point, I didn’t have a ton of mobility, so I spent the majority of my day in common rooms. I did PT in the family room, OT and schoolwork at the kitchen table. There was usually a TV on in the next room. Someone talking on the phone somewhere, and just the noise of six other people in the house - one being a toddler. Not a quiet place for cognitive work!</div><div><br /></div><div>Needless to say, it’s a safe guess that I was struggling with filtering at this point as well as depression. You mentioned that I kept responding, “I don’t know” to your questions. You also said that I may have said, “It doesn’t matter.”</div><div><br /></div><div>At that point, we didn’t know anything about aphasia. Now, I can say that “I don’t know” is a really common filler phrase when I’m overloaded. It’s something I can say in the moment that buys time. “It doesn’t matter” really feels like it’s depression-related to me. (As in, “School is insignificant because everything has changed, and I don’t know what to do.”)</div><div><br /></div><div>Tonia, how did you interpret my responses to your questions as a 16-year-old with no context about communication disorders or brain injuries? </div><div><br /></div><div><b>TONIA:</b> I was frustrated. </div><div><br /></div><div>Growing up disabled, I took your brain injury in stride and with the context I’d been given about my own CP: “Tonia’s just like everyone else, she just uses a walker,” (at the time.) So, I thought, “Tara’s still the same. She’s still herself. She just has a brain injury.” To me, this meant you struggled with headaches, with the trauma of surgery, and with various physical tasks, like I mentioned above.</div><div><br /></div><div>I had no idea your communication had been impacted. So, I thought you were just kind of over it? Like, you didn’t want to do homework, and I was being a big pain in your butt by talking about it.</div><div><br /></div><div><b>TARA:</b> You interpreted my attempts at communication as noncompliance. As passive-aggression. Is that right?</div><div><br /></div><div><b>TONIA:</b> Yes.</div><div><br /></div><div><b>TARA</b>: What happened next?</div><div><br /></div><div><b>TONIA:</b> So, I’d read aloud from a textbook and then ask you what you wanted me to write down for your answer. I kept asking, because I wasn’t getting an answer. Eventually, I was like, “Just pick something.” </div><div><br /></div><div>And I believe you said: “<i>You</i> pick something.” </div><div><br /></div><div>And I was like: “...This isn’t my homework…” We had essentially ground to a halt, and I was exasperated. I snapped: “I’m trying to <i>help</i> you!”</div><div><br /></div><div>And what did you say? </div><div><br /></div><div><b>TARA:</b> “YOU HAVEN’T DONE <i>ANYTHING</i> TO HELP ME!” </div><div><br /></div><div><b>TONIA:</b> And then, I left. Because my feelings were hurt. </div><div><br /></div><div>But do you want to say anything about how you may have felt in that moment? (I know you don’t necessarily remember this firsthand…)</div><div><b><br /></b></div><div><b>TARA:</b> I don’t remember anything about this night in particular aside from the last two sentences - what you said and how I responded.</div><div><br /></div><div>I remember feeling, as a rule, completely deadened when it came to emotions. I suspect now that I was dissociating as a coping mechanism, so everything just felt far away and unreal, but it ached at the same time? Very few things were able to get through to me emotionally. But this moment was one of them.</div><div><br /></div><div><b>TONIA:</b> It got through to you? How so?</div><div><br /></div><div><b>TARA:</b> I think because you were being authentic with me, instead of masking your feelings? Your authenticity broke through to me and triggered my authenticity, I think.</div><div><br /></div><div><b>TONIA:</b> Because, let’s be real, I wasn’t helping you by badgering you endlessly…</div><div><br /></div><div><b>TARA:</b> You’re referring to what I said?</div><div><br /></div><div><b>TONIA:</b> Yes. You mentioned it triggered your authenticity. Is that not what you meant? Your response that I hadn’t done anything to help you?</div><div><br /></div><div><b>TARA:</b> I meant that you reached me on an emotional level, past dissociation and depression. In that moment, when I responded to your words, I felt such a strong rush of adrenaline. I think the term is “flooded,” when you are flooded by stress hormones? Prior to this, I had a very even keel. I may have <i>felt</i> overwhelmed, but I rarely reacted to it. However, due to my new injury, I was much more uninhibited in certain moments. </div><div><br /></div><div>So, that’s the memory I have of this exchange. A few words. And a <i>huge</i> rush of emotion.</div><div><b><br /></b></div><div><b>TONIA:</b> So, can I ask… What <i>did</i> you mean when you said I hadn’t done anything to help you? Is that what you meant to say?</div><div><br /></div><div><b>TARA: </b>I’m sure I felt like maybe you <i>weren't</i> being particularly helpful in that moment. But the overriding feeling that I’d meant to convey was, “I don’t think anyone <i>can</i> help me.” </div><div><br /></div><div><b>TONIA:</b> So, you were feeling helpless? Or hopeless, maybe?</div><div><br /></div><div><b>TARA: </b>Yes, and just sort of useless too.</div><div><b><br /></b></div><div><b>TONIA:</b> Oof. I’m so sorry about that. Thanks for trusting me.</div><div><br /></div><div>While you were writing this response, I found a note you wrote me around that time. Less than five months after your brain injury. I feel like it is, in part, a direct response to this interaction we’d had. Is it okay to share an excerpt?</div><div><br /></div><div><b>TARA:</b> Sure.</div><div><br /></div><div><b>TONIA:</b> So, you wrote:</div><div><br /></div><div><i>...Accepting help is hard for me lately. I feel like a huge dork cuz you know so much more than me! I don’t know what else to do except act like the dork that I feel like. It’s no excuse, I know. …I love you with all my heart and soul – but I resent you, too.</i></div><div><br /></div><div><b>TARA:</b> I remember writing that. It felt cathartic to finally be able to express myself - to say what I meant to say. </div><div><br /></div><div><b>TONIA:</b> Honestly, same. I felt encouraged reading your note, because it felt like after months of isolation from each other, we were beginning to connect again.</div><div><b><br /></b></div><div><b>TARA:</b> But how did our homework exchange that night affect you, Tonia?</div><div><b><br /></b></div><div><b>TONIA: </b> I felt like…if I can be frank… </div><div><br /></div><div><b>TARA:</b> Please.</div><div><br /></div><div><b>TONIA:</b> I was right there with you feeling helpless, hopeless and useless. I felt like there was nothing I could do that would make things any easier or better for you. </div><div><br /></div><div>And honestly, that feeling persisted for about 15 years. It really impacted our relationship, until we were able to have our first conversation about this exchange.</div><div><br /></div><div><b>TARA:</b> Because we didn’t know what we were dealing with, disability-wise. We didn’t have representation of any kind. </div><div><br /></div><div><b>TONIA:</b> And more than that we didn’t have any adults in our world (the medical community or otherwise) who knew how brain injuries felt, or how they actually impacted people. You had no idea all the ways it impacted you, so you couldn’t communicate that to me.</div><div><b><br /></b></div><div><b>TARA:</b> And that really damaged our relationship for a long time, until we started investigating things for ourselves. Finding the words. Eventually, seeing some media representation…</div><div><br /></div><div><b>TONIA: </b>Yes, the media representation came about 20 years later…and it wasn’t good. But the one good thing it <i>did</i> was that it got us talking. For the first time, we really discussed aphasia. And I realized your brain injury does impact your ability to communicate. And that you can’t always say what you mean.</div><div><br /></div><div><b>TARA:</b> I think that’s a huge reason why these posts and media representation means so much to us. I’d love to circle back to this exchange as we continue to discuss Alex and 13RW.</div><div><br /></div><div><b>TONIA:</b> Definitely. I’d love that.</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEh50n7qQkszmugSijHcASnxkOgIgsEEs_-CgEBPxYKk_vxyvPNXQTQAKvL8xqr60NlsB-EYbZ9wkB_2mfUkSRVR5MDzhH8fweFNXABvHBKZUNtaZNIJf-q8Js03BsbPnf6LMfEQULYECzjzKou1Q0no8W09t-jOBi6vuRSevk_s9ulertNHFFoEQenl=s268" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="150" data-original-width="268" height="150" src="https://blogger.googleusercontent.com/img/a/AVvXsEh50n7qQkszmugSijHcASnxkOgIgsEEs_-CgEBPxYKk_vxyvPNXQTQAKvL8xqr60NlsB-EYbZ9wkB_2mfUkSRVR5MDzhH8fweFNXABvHBKZUNtaZNIJf-q8Js03BsbPnf6LMfEQULYECzjzKou1Q0no8W09t-jOBi6vuRSevk_s9ulertNHFFoEQenl" width="268" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[Alex: I'm sorry I'm not fucking normal, Dad! I know that's so hard for you!]</td></tr></tbody></table><div style="text-align: center;"><br /></div><div><br /></div><div><b>13RW does something interesting in that it normalizes the concept of teen boys having outbursts of emotion. Prior to Alex’s injury in episode 1x06, he has a loud confrontational outburst with another student. </b></div><div><b><br /></b></div><div><b>Post-injury, Alex’s outbursts are acknowledged and deescalated. Can we talk about the novel way people in Alex’s life react to his communication? </b></div><div><br /></div><div><b>TONIA:</b> Well, it is definitely novel! Even in recent years, so-called outbursts by disabled characters in the media are responded to with nothing short of abuse. Seeing calm responses is groundbreaking.</div><div><br /></div><div>Are there any specific scenes you want to discuss, Tara?</div><div><br /></div><div><b>TARA:</b> There’s a scene at the end of the camping trip episode (4x04) that I found particularly interesting. In it, the seniors are passing a conch shell (deemed the “sharing shell”) around as they take turns talking around the campfire. When it’s Alex’s turn, his friends quietly worry that he is going to confess to Bryce’s murder. Instead, he confesses to really hating camping. He then throws the shell at a nearby tree, where it shatters. The seniors and chaperones laugh.</div><div><br /></div><div>It’s a relatively small scene, but the framing of it feels like a big deal. I can easily envision an alternate version of this scene, where the reaction to Alex throwing the shell is disapproval - where he is shepherded away to calm down. Instead, the throwing of the shell was taken as a legitimate expression supporting the words Alex said. </div><div><br /></div><div>More than that, this moment was received with humor, which is rare cross-culturally. </div><div><br /></div><div style="text-align: center;">***</div><div> </div><div><b>Something we say often between ourselves is “behavior is communication.” We’ve also discussed the concept of “self advocacy” recently and how it’s quite restrictive. But can we discuss how Alex’s outbursts are often actually advocacy?</b></div><div><br /></div><div><b>TONIA: </b>Yes, self-advocacy is often viewed through a narrow lens. Attempts at self-advocacy are often dismissed because of a disabled person’s loudness or intensity. But often if we are soft and quiet, we aren’t believed or taken seriously. Our advocacy has to be loud in order to “make a dent.”</div><div><br /></div><div><b>TARA:</b> There <i>are</i> many moments in the series which do portray Alex loudly and demonstratively self-advocating. (I’m recalling 2x01, where he asked his mother to see his note.) I love that 13RW shows that imperfect self-advocacy is still legitimate communication and can be taken as such.</div><div><br /></div><div><b>TONIA:</b> Yes, I agree!</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>We think it’s also very important to point out that not ALL of Alex’s outbursts are advocacy. There are a couple of times when (because of steroid use) he is quite intimidating and emotionally abusive. Can we talk more about this nuanced representation?</b></div><div><b><br /></b></div><div><b>TONIA:</b> No human being is one-dimensional. Alex is no exception. His drug use definitely contributes to him being confrontational in a way that is abusive. I honestly really appreciate that these nuances are shown. Because then we see that Alex is not just solely “good” or solely “bad”, he’s some of both, as everyone is.</div><div><br /></div><div><b>TARA: </b>In 3x07, Alex confronts Jessica. He towers over her as she sits, intimidates her and yells at her publicly. As Tonia said, we get to see nuance over the course of the series, with regard to brain injury representation, which remains a rare thing.</div><div style="text-align: center;"><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>Alex having outbursts does not change throughout the series. It’s people’s reactions to him that are noteworthy and which create novel disability representation. What do we hope audiences take away from watching a show like “13” in terms of outbursts as communication.</b></div><div><br /></div><div><b>TONIA:</b> I hope it will help people widen their scope of what they deem “acceptable” communication and kind of get out of their own way a bit, in terms of preconceived notions and ideas. (I say this as someone who regularly comes up against my own in our interactions.) Not everyone’s communication looks the same. And it’s a good reminder to listen to <i>what</i> the other person is saying and not <i>how</i> they’re saying it.</div><div><br /></div><div><b>TARA:</b> I hope that it helps people to see different ways to react to loud, blunt, and demonstrative communication. That it’s possible to deescalate these moments by taking the time to hear and respond to the message, as opposed to tone-policing its delivery. </div><div><br /></div><div><b>TONIA:</b> Oof. Yes. Thanks for talking about this with me!</div><div><br /></div><div><b>TARA:</b> Of course! I love it!</div><div><br /></div><div style="text-align: center;"><div>***</div><div><br /></div><div><div><div><b><a href="https://toniasays.blogspot.com/2021/06/summer-blog-series-2021-brain-injury.html">Return to the Table of Contents</a></b></div><div><br style="text-align: left;" /></div><div><br /></div></div><div><div>***</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><i>Have you seen 13 Reasons Why on Netflix? </i></div><div style="text-align: left;"><i><br /></i></div><div style="text-align: left;"><i>Did reading our conversation about Alex and outbursts help you realize anything or notice anything you hadn't registered before? </i></div><div style="text-align: left;"><i><br /></i></div><div style="text-align: left;"><i>We'd love to hear from you in the comments.</i></div><div><br /></div><div><div style="text-align: left;"><div style="text-align: center;">***</div></div><div><br /></div><div><i>Don't forget to connect on <b><a href="https://draft.blogger.com/blog/post/edit/4060372686205861977/2611864409909275077#">Facebook</a> / <a href="https://draft.blogger.com/blog/post/edit/4060372686205861977/2611864409909275077#">Twitter</a> / <a href="https://draft.blogger.com/blog/post/edit/4060372686205861977/2611864409909275077#">Instagram</a></b></i></div><div><i><br /></i></div><div><i>Connect with Tara on Twitter <b><a href="https://twitter.com/TaraJean">@TaraJean</a></b></i></div></div></div></div></div><div><br /></div><div><br /></div>Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.com0tag:blogger.com,1999:blog-4060372686205861977.post-16028298209917372032021-12-31T10:00:00.088-06:002021-12-31T10:00:00.198-06:00Top 10 Posts From 2021 <div style="text-align: center;"><b>778 words</b></div><div style="text-align: center;"><b>6 minute read</b></div><div><br /></div>2021 has been very different. <div><br /></div><div>And it's been very much the same.</div><div><br /></div><div>We are still quarantining, for example. I'm still writing. Still reading. Still watching shows.</div><div><br /></div><div>But...</div><div><br /></div><div>We also got new leadership this year. We got vaccinated. I've been trying to break new ground with the fiction I write, and persevere despite the negative feedback.</div><div><br /></div><div>And as I have off and on since I started this blog, I like to take a look back and see which posts resonated with readers. So here are my Top 10 (Most Viewed) Posts from 2021:</div><div><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgMcurPNkmYcsGtmGP0aNyxhTJT6ApfrMlzJ6O_muWshLpTUPK7cRkzztpCw1kz8wXjRL0yfTveC6cWxXOL6TNXpj6Ry3TZdV3GRUX_dN_Q1VLC7IZUovU8yGic1a-XUdh5CKfp-2kQ5T1hzvM72ho9QxGvGa8a9ULbhb1qit1YUtG8CpUlZpNAyoU6=s960" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="652" data-original-width="960" height="217" src="https://blogger.googleusercontent.com/img/a/AVvXsEgMcurPNkmYcsGtmGP0aNyxhTJT6ApfrMlzJ6O_muWshLpTUPK7cRkzztpCw1kz8wXjRL0yfTveC6cWxXOL6TNXpj6Ry3TZdV3GRUX_dN_Q1VLC7IZUovU8yGic1a-XUdh5CKfp-2kQ5T1hzvM72ho9QxGvGa8a9ULbhb1qit1YUtG8CpUlZpNAyoU6=s320" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[2021 can be seen in purple over the top of fireworks]</td></tr></tbody></table><br /><div style="text-align: center;">***</div><div style="text-align: center;"><b><br /></b></div><div style="text-align: left;">10.<b> <a href="https://toniasays.blogspot.com/2021/06/10-things-to-know-when-getting.html">10 Things To Know When Getting Vaccinated With CP</a> (June, 2021)</b> - This summer, after taking a few days to recover from the gnarly Moderna vaccine, I wrote this post without much forethought. The only thing on my mind was that the vaccines were (and still are) so new that I was sure there were people out there wondering about getting vaccines for themselves or their loved ones with CP. I'm glad this post made the list this year. Definitely important.</div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;">9. <b><a href="https://toniasays.blogspot.com/2021/09/when-cp-leads-to-falling-and-falling.html">When CP Leads to Falling and Falling Triggers Past Trauma</a> (September, 2021) </b>- If you've been here for any length of time you know how much I love tackling tough topics via conversation posts with my sister. This one was no exception. I'm always down to discuss issues I don't see talked about much, and this was definitely one of those!</div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;">8. <b><a href="https://toniasays.blogspot.com/2021/04/how-unrealistic-iep-goals-put-me-in.html">How Unrealistic IEP Goals Put Me in Danger as a Disabled Child</a> (April, 2021) </b>- This post was cobbled together from a post on my private blog and something I wrote years ago and only showed one other person. But ever since 2020, I've decided to speak out about some of the things I've kept quiet about for years. The abuse I endured as a child is one of those things. Disabled children are not exempt from maltreatment. In fact, we are more at risk than most...</div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;">7. <b><a href="https://toniasays.blogspot.com/2021/02/disabled-people-our-right-to-life.html">Disabled People, Our Right to Life Exists Even When We're 'Noncompliant'</a> (February, 2021)</b> - Sometimes, a post just springs out of me. And one night, after being gobsmacked at a comments section that began with a well-meaning discussion question and then devolved, I knew I had to address some things.</div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;">6. <b><a href="https://toniasays.blogspot.com/2021/05/when-my-ableist-teacher-used-my-report.html">When My Ableist Teacher Used My Report Card to Praise My Parents</a> (May, 2021) </b>- If you know me, you know I keep everything relevant. And occasionally, I sort through all the things I've amassed. So, when I found an old report card from the fourth grade -- and saw what was written on it -- I knew I had to blog about it. Especially, as it's a thing that still happens today.</div><div style="text-align: left;"><br /></div><div style="text-align: center;"> ***</div><div style="text-align: center;"><br /></div><div style="text-align: left;">5. <b><a href="https://toniasays.blogspot.com/2021/10/medical-trauma-and-cp.html">Medical Trauma and CP </a>(October, 2021) </b>After reading one too many posts by nondisabled parents who claim that their child with CP "got over their trauma from X medical procedure with no anesthesia really fast" and seeing a series of deeply disturbing photos of a child with CP enduring such an (unnecessary) medical intervention, this post was born. I put a lot of myself into this one -- especially because I've never read anything else on the subject. I'm really glad it's in the Top 10.</div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div style="text-align: left;"><br /></div><div style="text-align: left;">4. <b> <a href="https://toniasays.blogspot.com/2021/11/lets-talk-about-cerebral-palsy-and-high.html">Let's Talk About Cerebral Palsy and High Pain Tolerance</a> (November, 2021) - </b>Along the same lines of the above post, I think, there is a lot of erroneous information out there regarding people with CP and our pain tolerance. I feel like the notion that we have high pain tolerance might be used as a kind of subconscious justification for all manner of invasive unnecessary treatments.</div><div style="text-align: left;"><br /></div><div style="text-align: center;"><span style="text-align: left;">***</span></div><div style="text-align: center;"><br /></div><div style="text-align: left;">3. <b><a href="https://toniasays.blogspot.com/2021/03/things-i-want-to-tell-you-but-cant.html">Things I Want To Tell You, But Can't</a> (March, 2021) </b>- Originally written on a private blog in December, 2016, I wrote this less than a week after the events in question. With very minimal edits, I made the choice to keep the content the same. Honestly, I was terrified to post this one and I was shocked by how it was received.</div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;">2. <b><a href="https://toniasays.blogspot.com/2021/03/10-things-no-one-tells-you-about-aging.html">10 Things No One Tells You About Aging With CP</a> (March, 2021) </b>- I see the same questions time and time again from both adults with CP and nondisabled parents, regarding aging and CP. So, I thought I'd make a list. And it seems it's done pretty well.</div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;">1. <b><a href="https://toniasays.blogspot.com/2021/01/bridgertons-rape-scene-and-how-it.html">Bridgerton's Rape Scene and How It Connects to Disability</a> (January, 2021) </b>- I was such a fan of the show originally -- but this scene remains one of the most disturbing things I've witnessed -- as well as the majority response to it.</div><div style="text-align: left;"><br /></div><div style="text-align: center;"><div><br /></div><div>*** </div><div><br /></div><div><i>Don't forget to connect on <b><a href="https://www.blogger.com/blog/post/edit/4060372686205861977/6526244127167962145#">Facebook</a> / <a href="https://www.blogger.com/blog/post/edit/4060372686205861977/6526244127167962145#">Twitter</a> / <a href="https://www.blogger.com/blog/post/edit/4060372686205861977/6526244127167962145#">Instagram</a></b></i></div></div>Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.com0tag:blogger.com,1999:blog-4060372686205861977.post-74536937640445265192021-12-27T10:00:00.090-06:002021-12-27T10:00:00.188-06:00Unpacking "I Can't": An Interview with Emily Ball<div style="text-align: center;"><b>327 words</b></div><div style="text-align: center;"><b>3 minute read</b></div><div style="text-align: left;"><br /></div><div style="text-align: left;">I'm seriously loving this "I Can't" series.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">This week, I'm sharing Emily Ball's responses to these questions and I've got to say, I <i>love</i> her response to the risks and vulnerabilities question. Be sure to check that out, as well as the rest of her responses.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Here's what she has to say:</div><div style="text-align: center;"><br /></div><div style="text-align: center;">***</div><div><b><br /></b></div><div><b>Were you allowed to say “I can’t” when you were growing up?</b></div><div><br /></div><div><b>EMILY: </b> No. I mean, I did, but it was met with variants of <i>“Yes, you can!”</i></div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div><b>What do you mean as a person with a disability when you say, “I can’t?” (Are there cultural nuances to the phrase that get misunderstood?)</b></div><div><br /></div><div><b>EMILY:</b> I mean that I physically cannot do something because it is too physically tiring, or I am literally unable to perform said task.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div><b>What risks or vulnerabilities exist in saying “I can’t” as a disabled person?</b></div><div><br /></div><div><b>EMILY:</b> …You risk being told to perform [a] task again to prove yourself. You have people watching you, so you feel “on” in a sense.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div><b>Do you have any memories of saying or wanting to say, “I can’t?” How was this limit received? </b></div><div><br /></div><div><b>EMILY:</b> Yes, and it was received [with a] brush off, such as <i>“Sure you can, never say never!”</i> etc.</div><div><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEj18raCteNOarUwYJt5HwMdKQFOFt_0WRPc7cpyNIfH4RYSDsfNAqGBSngUZTLSJS7QdZoLpE0hU9S5cAm3ALf6TaqWFbbvxTY8RbCn-MX_xnHJHq6_i9jK7r_JfTGsoxWcpOlcY7CtY9W8tghH1r-6rpacFAT6xT6TBVFriyV4PiAOd0hfOK29pjS_=s2048" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2048" data-original-width="1635" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEj18raCteNOarUwYJt5HwMdKQFOFt_0WRPc7cpyNIfH4RYSDsfNAqGBSngUZTLSJS7QdZoLpE0hU9S5cAm3ALf6TaqWFbbvxTY8RbCn-MX_xnHJHq6_i9jK7r_JfTGsoxWcpOlcY7CtY9W8tghH1r-6rpacFAT6xT6TBVFriyV4PiAOd0hfOK29pjS_=s320" width="255" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[Emily smiles for the camera]</td></tr></tbody></table><br /><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div><b>What message was conveyed to you because of moments like this? </b></div><div><br /></div><div><b>EMILY:</b> That I should try to conform to [be] seen as able as possible.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><b>Have your experiences contributed to the way you set or struggle to set boundaries?</b></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>EMILY:</b> Yes absolutely. I struggle because I feel as if others expect things of me and if I can’t / [don’t] want to conform, I’ve failed.</div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><b><br /></b></div><div style="text-align: left;"><div><b>Anything more you’d like to add?</b></div><div><br /></div><div><b>EMILY:</b> Sure. Never tell other adults “Please don’t distract so-and-so” [when a disabled person says they can’t do something], because I [was] always internally begging for a distraction - there’s only so much we can tolerate.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: center;"><i>Connect with Emily</i></div><div style="text-align: center;"><i><br /></i></div><div style="text-align: center;"><i><a href="https://twitter.com/EmilyEmily317"><b>@EmilyEmily317</b></a><br /></i></div></div></div></div></div></div>Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.com0tag:blogger.com,1999:blog-4060372686205861977.post-65871311303121224082021-12-20T10:00:00.061-06:002021-12-21T14:40:13.244-06:00Unpacking "I Can't": An Interview with Alice Kina Diehl<div style="text-align: center;"><b>466 words</b></div><div style="text-align: center;"><b>4 minute read</b></div><div><br /></div><div>If you've read Tonia Says over the years, I know you'll recognize who I'm interviewing next. </div><div><br /></div><div>I first blogged about Alice Kina Diehl after seeing her as emergency dispatcher <b><a href="https://toniasays.blogspot.com/2018/02/review-9-1-1-1x06-heartbreaker.html">Stephanie Gaskins</a></b> on the FOX show 9-1-1. Months later, her wife, <b><a href="https://toniasays.blogspot.com/2021/12/unpacking-i-cant-interview-with-amanda.html">Amanda</a></b>, contacted me online and I was able to do <b><a href="https://toniasays.blogspot.com/2018/07/interview-with-alice-kina-diehl.html">this interview</a> </b>with Alice about her acting career. And over the summer, I interviewed Alice again about <b><a href="https://toniasays.blogspot.com/2021/07/how-pandemic-life-has-been-for-alice.html">pandemic life</a></b>.</div><div><br /></div><div>So, I was thrilled that Alice said yes to being interviewed again about the complicated relationship many of us disabled people have with the phrase, "I can't." Alice is no exception.</div><div><br /></div><div>Here's what she has to say:</div><div><br /></div><div style="text-align: center;">***</div><div><b><br /></b></div><div><b>Were you allowed to say “I can’t” when you were growing up?</b></div><div><br /></div><div><b>ALICE:</b> Yes, I was allowed to say it at home. But not at school. That was seen as a weakness by teachers.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><b><br /></b></div><div style="text-align: left;"><div><b>What do you mean as a person with a disability when you say, “I can’t?” (Are there cultural nuances to the phrase that get misunderstood?)</b></div><div><br /></div><div><b>ALICE:</b> It means that my body is done for the day and tomorrow is a new day.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><b><br /></b></div><div style="text-align: left;"><div><b>What risks or vulnerabilities exist in saying “I can’t” as a disabled person?</b></div><div><br /></div><div><b>ALICE: </b> There can be a lot of gaslighting involved. And also loss of jobs/work.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div><b>Do you have any memories of saying or wanting to say, “I can’t?” How was this limit received? </b></div><div><br /></div><div><b>ALICE:</b> All the time in school. </div><div><br /></div><div>And it was the same thing when I went into the regular workforce. People thought I was faking it. They would yell at my mother for keeping me home. </div><div><br /></div><div>One time, I tried to stay home because my friend [had] passed away, and they said that was not…acceptable, even though my disability affects my emotions, and how I process things.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhZeqXctttTUsXIKEMzz5PNqFdU-az67zA6eNq7AmGsbgU-_x0z40Dnt2roCBkfU4oq_fc04LQGtBeEXhUr3yi-IL8L8XPkWvuH3yGpGLOCK9MBbg9ZoWCtNPP5Y39EAM13-xm4gbrgTJcuM-psJfLV7WRCjwPnmo3p1iu15mQtO3blHf9Ij3ykphRw=s2048" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1536" data-original-width="2048" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEhZeqXctttTUsXIKEMzz5PNqFdU-az67zA6eNq7AmGsbgU-_x0z40Dnt2roCBkfU4oq_fc04LQGtBeEXhUr3yi-IL8L8XPkWvuH3yGpGLOCK9MBbg9ZoWCtNPP5Y39EAM13-xm4gbrgTJcuM-psJfLV7WRCjwPnmo3p1iu15mQtO3blHf9Ij3ykphRw=s320" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[Alice (middle) poses with her wife, Amanda (left) and dog, Marla]</td></tr></tbody></table><br /><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div><b>What message was conveyed to you because of moments like this? </b></div><div><br /></div><div><b>ALICE:</b> That our society has a lot of work to be done as far as how they view disability.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div><b>Have your experiences contributed to the way you set or struggle to set boundaries?</b></div><div><br /></div><div><b>ALICE:</b> Absolutely. It happened this week for me. I was supposed to work three days in the industry, and I only worked one. Part of me wants to see that [as a] failure. But at least I was able to do one.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div><b>Anything more you’d like to add?</b></div><div><br /></div><div><b>ALICE: </b> Just believe us when we say that we can’t make it for a day. It doesn’t mean that you shouldn’t hire us or include us. It just means that you have to adapt to us.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><b>UNPACKING "I CAN'T WITH: <a href="https://toniasays.blogspot.com/2021/11/unpacking-i-cant-interview-withme.html">Tonia</a> / <a href="https://toniasays.blogspot.com/2021/12/unpacking-i-cant-interview-with-tara.html">Tara</a> / <a href="https://toniasays.blogspot.com/2021/12/unpacking-i-cant-interview-with-amanda.html">Amanda</a> / <a href="https://toniasays.blogspot.com/2021/12/unpacking-i-cant-interview-with-alice.html">Alice</a></b></div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: center;"><i>Find out more about Alice Kina Diehl:</i></div><div style="text-align: center;"><i><br /></i></div><div style="text-align: center;"><i><b><a href="https://www.imdb.com/name/nm4086586/?fbclid=IwAR1qyOym2cObWcFV-zWlsO1qTpj6GQ1SsE6G9ROrAdXMG9COdZDtFojEQNQ">IMDB</a> / <a href="https://www.instagram.com/rollin.__.stoned/">Instagram</a> / <a href="http://www.wearerollinstoned.com">Rollin Stoned</a> </b></i></div></div></div></div></div></div></div>Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.com0tag:blogger.com,1999:blog-4060372686205861977.post-33717259640347471302021-12-13T10:00:00.103-06:002021-12-21T14:42:11.596-06:00Unpacking "I Can't": An Interview with Amanda Diehl<div style="text-align: center;"><b>316 words</b></div><div style="text-align: center;"><b>2 minute read</b></div><div style="text-align: left;"><br /></div><div style="text-align: left;">We're back again this week with another opportunity to unpack what "I can't" means to disabled people. This week, I'm interviewing my friend, Amanda Diehl about their experiences with the phrase "I can't."</div><div style="text-align: left;"><br /></div><div style="text-align: left;">As you'll find, there are some definite similarities across the stories shared so far, but Amanda also discusses the impact needing to say "I can't" in the workforce can have.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Here's what they have to say:</div><div style="text-align: center;"><b><br /></b></div><div style="text-align: center;"><b>***</b></div><div><b><br /></b></div><div><b>Were you allowed to say “I can’t” when you were growing up?</b></div><div><br /></div><div><b>AMANDA:</b> Absolutely not. If I tried, [I was told], <i>“Yes you can.”</i> I would then have to try.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><b>What do you mean as a person with a disability when you say, “I can’t?” (Are there cultural nuances to the phrase that get misunderstood?)</b></div><div style="text-align: left;"><b><br /></b></div><div style="text-align: left;"><b>AMANDA: </b> “I can’t” means I’m out of <a href="https://www.healthline.com/health/spoon-theory-chronic-illness-explained-like-never-before#1"><b>spoons</b></a>. My body isn’t able to continue what it’s doing.</div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><b>What risks or vulnerabilities exist in saying “I can’t” as a disabled person?</b></div><div style="text-align: left;"><b><br /></b></div><div style="text-align: left;"><b>AMANDA: </b> Loss of job, if you have one.</div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div><b>Do you have any memories of saying or wanting to say, “I can’t?” How was this limit received? </b></div><div><br /></div><div><b>AMANDA:</b> When I was a Vet Tech, I was eventually made to work 6 days a week. When I said, <i>“I can’t do that because of my illness,”</i> I was called several names on a couple occasions and told to suck it up.</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEiAuSSU3rGCr-k5yo2G_vh1ahSnh-CNAv6NSfPgEbsSpNUtAJS4swD80YQhHTQtrTw3IMFBcypMzMk6wlcvvruT2hSdItezjhqGQtSFGmAwyfgl8Y8sbPbLYzFHLFytzIrioPRdhxh5PcyEU2r4hRp8mHPkAe3Ok1_0oy4fGhdzIzi9sbQMVSdGtGKB=s2048" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEiAuSSU3rGCr-k5yo2G_vh1ahSnh-CNAv6NSfPgEbsSpNUtAJS4swD80YQhHTQtrTw3IMFBcypMzMk6wlcvvruT2hSdItezjhqGQtSFGmAwyfgl8Y8sbPbLYzFHLFytzIrioPRdhxh5PcyEU2r4hRp8mHPkAe3Ok1_0oy4fGhdzIzi9sbQMVSdGtGKB=s320" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[ID: Amanda and their dog, Marla, cuddle. Amanda is frowning.]</td></tr></tbody></table><br /><div style="text-align: center;">***</div><div><b><br /></b></div><div><b>What message was conveyed to you because of moments like this? </b></div><div><b><br /></b></div><div><b>AMANDA: </b>That I needed to try harder. I know that’s not true <i>now</i>, but then it made me feel weak.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div><b>Have your experiences contributed to the way you set or struggle to set boundaries?</b></div><div><br /></div><div><b>AMANDA: </b> Yup! I struggled a lot for a long time, and it’s taken some long therapy sessions to help with it.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: center;"><div><br /></div><div style="text-align: left;"><b>UNPACKING "I CAN'T WITH: <a href="https://toniasays.blogspot.com/2021/11/unpacking-i-cant-interview-withme.html">Tonia</a> / <a href="https://toniasays.blogspot.com/2021/12/unpacking-i-cant-interview-with-tara.html">Tara</a> / <a href="https://toniasays.blogspot.com/2021/12/unpacking-i-cant-interview-with-amanda.html">Amanda</a> / <a href="https://toniasays.blogspot.com/2021/12/unpacking-i-cant-interview-with-alice.html">Alice</a></b></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div></div></div></div>Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.com0tag:blogger.com,1999:blog-4060372686205861977.post-84954321428999972962021-12-06T10:00:00.109-06:002021-12-21T14:41:35.097-06:00Unpacking "I Can't": An Interview with Tara<div style="text-align: center;"><b>512 words</b></div><div style="text-align: center;"><b>4 minute read</b></div><div><br /></div>I'm still floored by -- and so grateful for -- all the responses I got from my friends in the disabled community on our sometimes complicated relationship with the phrase "I can't."<div><br /></div><div>This week, I'm sharing my sister, Tara's responses to these questions. I love talking to Tara about anything disability-related, her perspective is so different from mine. She often thinks about things I forget to even mention. Her voice is so valuable.</div><div><br /></div><div>Here's what she has to say:</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><span id="docs-internal-guid-66710422-7fff-af0f-9118-ea0cf0f906c3"><div><b>Were you allowed to say “I can’t” when you were growing up?</b></div><div><br /></div><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"></p><div><b>TARA:</b> If I indicated fear as a young child, that was occasionally acceptable. “Can’t” was largely viewed as manipulation and / or l*ziness.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div><b>What do you mean as a person with a disability when you say, “I can’t?” (Are there cultural nuances to the phrase that get misunderstood?)</b></div><div><br /></div><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"></p><div><b>TARA:</b> Sometimes, “I can’t” indicates a firm limit, as in “My brain / body literally cannot do the thing.” And sometimes, it refers a projected overextension of my bodymind’s capabilities. And the latter, I think, can be particularly misunderstood.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div><b>What risks or vulnerabilities exist in saying “I can’t” as a disabled person?</b></div><div><br /></div><div><b>TARA: </b>Honestly, it’s opening yourself up to all sorts of potential ableism, from microaggressions to gaslighting to all sorts of abuse.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div><b>Do you have any memories of saying or wanting to say, “I can’t?” How was this limit received? </b></div><div><br /></div><div><b>TARA:</b> I remember being in a swimming class as a very young child. I knew I couldn’t swim, even after several lessons. </div><div><br /></div><div>One day, the swimmers were made to swim from one adult to another, several yards away. I sobbed and clung to the adult who held me. I don’t recall saying, “I can’t.” (An undiagnosed communication disorder made speaking in certain situations impossible.) </div><div><br /></div><div>The response to my intense fear and nonverbal “no” was to be pushed out into the open water of the swimming pool, where I promptly began to sink. </div><div><br /></div><div>I was not rescued immediately. It seemed that they waited to see whether I would begin to swim after all, before coming to the conclusion that I did, in fact, need intervention. </div><div><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSD1yakSpzPFbP26KsPDwkjl7Clr4YClRiAPfeFIunvdlNNVHmAYHg8rmlhZvEJ9irag3c4V57pbIpYKvFc7gZcPdzRNurGPWFL26FsILOXmamHOGv6Idc_O9Y_jUJw09xixRDKDnRPIY/s362/Screenshot+2021-12-04+2.18.39+PM.png" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="362" data-original-width="361" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSD1yakSpzPFbP26KsPDwkjl7Clr4YClRiAPfeFIunvdlNNVHmAYHg8rmlhZvEJ9irag3c4V57pbIpYKvFc7gZcPdzRNurGPWFL26FsILOXmamHOGv6Idc_O9Y_jUJw09xixRDKDnRPIY/s320/Screenshot+2021-12-04+2.18.39+PM.png" width="319" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[Tara, left, and Tonia, right, smiling on Christmas morning. We are 4 years old.]</td></tr></tbody></table><br /><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div><b>What message was conveyed to you because of moments like this? </b></div><div><br /></div><div><b>TARA:</b> So many messages were conveyed by that moment: <i>“The world is scary.” “Your feelings don’t matter.” “Your safety doesn’t matter.” “You are powerless against those bigger than you.”</i></div><div><i><br /></i></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div><b>Have your experiences contributed to the way you set or struggle to set boundaries?</b></div><div><br /></div><div><b>TARA:</b> Compliance culture is huge in the disability community. As such, boundaries really have no place for many of us growing up. </div><div><br /></div><div>I honestly had no boundaries for a very long time. It took decades for me to understand that boundaries were actually healthy to have, and that they applied to me.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div><b>Anything more you’d like to add?</b></div><div><br /></div><div><b>TARA:</b> To the adults in a disabled person’s world, please teach <i>and</i> honor limits, consent and autonomy. It’s so incredibly important. </div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><div><br /></div><div style="text-align: left;"><b>UNPACKING "I CAN'T WITH: <a href="https://toniasays.blogspot.com/2021/11/unpacking-i-cant-interview-withme.html">Tonia</a> / <a href="https://toniasays.blogspot.com/2021/12/unpacking-i-cant-interview-with-tara.html">Tara</a> / <a href="https://toniasays.blogspot.com/2021/12/unpacking-i-cant-interview-with-amanda.html">Amanda</a> / <a href="https://toniasays.blogspot.com/2021/12/unpacking-i-cant-interview-with-alice.html">Alice</a></b></div></div><div style="text-align: left;"><b><br /></b></div><div style="text-align: center;"><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: center;"><i>Connect with Tara on Twitter:</i></div><div style="text-align: center;"><br /></div><div style="text-align: center;"><a href="https://twitter.com/TaraJean"><b>@TaraJean</b></a><br /></div></div></div></div></div></div></span></div>Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.com2tag:blogger.com,1999:blog-4060372686205861977.post-6656690425163581672021-11-29T10:00:00.119-06:002022-02-22T11:44:08.728-06:00Unpacking "I Can't": An Interview with...Me<div style="text-align: center;"><b>462 words</b></div><div style="text-align: center;"><b>4 minute read</b></div><i><div><i><br /></i></div>“I can’t.” Sarah says, and the words taste like victory in her mouth. Growing up unallowed to say the C word, Sarah relishes it now. “I can’t open this.”</i><div><i><br /></i></div><div><div style="text-align: center;">***</div><div><i><br /></i></div><div>When a friend of mine read this excerpt of my current novel, her reaction was huge. And she recognized, as a fellow disabled person, how momentous it was for a disabled character to be able to utter the words, "I can't."</div><div><br /></div><div>That led to a pretty deep discussion and that led us to discussing the possibility for a blog post, and that led Tara to suggesting that we talk to more of our disabled friends and acquaintances to find out their relationship with the phrase, "I can't."</div><div><br /></div><div>So many friends volunteered and their responses were so good that I decided to share their interviews individually.</div><div><br /></div><div>Here's mine:</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5RTgOYG9EYxnQg87o7Ts8xUrYPIAH-oa2CdKhfumD6gBq0QdO4QkK-Yi_eyGJ2o7gNdWA3-0J_3E1iOZoYYjzzKgd9MscC2ZZ6_7RBJlS9kTX_V21JQtUEotGgNjZWNcK3AvD7mYemn8/s355/Screenshot+2021-11-27+8.46.47+PM.png" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="355" data-original-width="355" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5RTgOYG9EYxnQg87o7Ts8xUrYPIAH-oa2CdKhfumD6gBq0QdO4QkK-Yi_eyGJ2o7gNdWA3-0J_3E1iOZoYYjzzKgd9MscC2ZZ6_7RBJlS9kTX_V21JQtUEotGgNjZWNcK3AvD7mYemn8/s320/Screenshot+2021-11-27+8.46.47+PM.png" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[A black and white photo shows Tonia, her head in her hand. She's not smiling.]</td></tr></tbody></table><br /><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div><b>Were you allowed to say “I can’t” when you were growing up?</b></div><div><b><br /></b></div><div><b>TONIA: </b> I think, especially in physical therapy (from ages two to twelve) I was not listened to when I said, “I can’t.” I was instantly told, “Yes, you can.”</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div><b>What do you mean as a person with a disability when you say, “I can’t?” (Are there cultural nuances to the phrase that get misunderstood?)</b></div><div><br /></div><div><b>TONIA:</b> “I can’t,” for me, means I literally cannot physically do what’s asked of me. Sometimes because of my CP and sometimes even because of my C-PTSD.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div><b>What risks or vulnerabilities exist in saying “I can’t” as a disabled person?</b></div><div><br /></div><div><b>TONIA:</b> At worst? Assault.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div><b>Do you have any memories of saying or wanting to say, “I can’t?” How was this limit received? </b></div><div><br /></div><div><b>TONIA: </b> I rarely said, “I can’t”, but when pushed to walk with one crutch while carrying something in my free hand and being screamed at the entire time. My spasticity kicked with the stress of the situation and I fell on my knees. I was pulled to my feet by my hair and told to “stand the **** up!” </div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div><b>What message was conveyed to you because of moments like this? </b></div><div><br /></div><div><b>TONIA: </b> I felt worthless and degraded. I felt deeply misunderstood and deeply unloved.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><b><br /></b></div><div style="text-align: left;"><div><b>Have your experiences contributed to the way you set or struggle to set boundaries?</b></div><div><br /></div><div><b>TONIA:</b> The first time I set boundaries as an adult, it was terrifying, and led to rounds of harassment on and off for years. We still occasionally deal with this, but do our best to keep our boundaries in place.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div><b>Anything more you’d like to add?</b></div><div><br /></div><div><b>TONIA: </b>When a disabled person communicates a limit, practice believing them and offering help, rather than pushing them to ignore it.</div><div><br /></div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: left;"><div style="text-align: center;"><br /></div><div><b>UNPACKING "I CAN'T" SERIES. INTERVIEWS WITH: </b></div><div><b> <a href="https://toniasays.blogspot.com/2021/11/unpacking-i-cant-interview-withme.html">Tonia</a> / <a href="https://toniasays.blogspot.com/2021/12/unpacking-i-cant-interview-with-tara.html">Tara</a> / <a href="https://toniasays.blogspot.com/2021/12/unpacking-i-cant-interview-with-amanda.html">Amanda</a> / <a href="https://toniasays.blogspot.com/2021/12/unpacking-i-cant-interview-with-alice.html">Alice</a> / <a href="https://toniasays.blogspot.com/2021/12/unpacking-i-cant-interview-with-emily.html">Emily</a> / <a href="https://toniasays.blogspot.com/2022/01/unpacking-i-cant-interview-with-kayla.html">Kayla</a> / <a href="https://toniasays.blogspot.com/2022/01/unpacking-i-cant-interview-with.html">Anonymous</a> / <a href="https://toniasays.blogspot.com/2022/01/unpacking-i-cant-interview-with-k.html">K</a></b></div><div><br /></div></div><div style="text-align: left;"><br /></div><div style="text-align: center;"><div>***</div><div><br /></div><div><i>Don't forget to connect on <b><a href="https://www.facebook.com/toniasaysblog/">Facebook</a> / <a href="https://twitter.com/Tonia_Says">Twitter</a> / <a href="https://www.instagram.com/tonia_says/">Instagram</a></b></i></div><div><i><br /></i></div><div><i><br /></i></div></div></div></div></div></div></div></div></div></div>Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.com3tag:blogger.com,1999:blog-4060372686205861977.post-36259818405854672792021-11-22T10:00:00.066-06:002021-11-22T10:00:00.186-06:00What's So Wrong With Self-Advocacy?<div><div style="text-align: center;"><b>1,162 words</b></div><div style="text-align: center;"><b>9 minute read</b></div><div><i><br /></i></div><div><i>“How come you can advocate so well for other people, but you can’t do it for you?”</i></div><div><i><br /></i></div><div><i>“[Self]-advocacy only counts if you talk face-to-face, because people take writing the wrong way.”</i></div><div><br /></div><div>These are some harmful things I was told 5 years ago in the aftermath of dealing with countless access barriers, blame for those barriers and resistance when I put up a boundary to protect my health and safety. </div><div><br /></div><div><b>Related: <a href="https://toniasays.blogspot.com/2021/03/things-i-want-to-tell-you-but-cant.html">Things I Want to Tell You But Can’t</a></b></div><div><br /></div><div>For these reasons and more, Tara and I want to unpack what’s so wrong with self advocacy?</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>What do we mean by “self-advocacy?”</b></div><div><br /></div><div><b>TARA:</b> In simple terms, self-advocacy is defined as speaking up for oneself. </div><div><br /></div><div>The word seems to have been first used by activists during the disabled civil rights movements of the 1960s and 1970s. Now, though, self-advocacy is most often used by a majority nondisabled population. The education system, and by extension, nondisabled parents of disabled children, view self-advocacy as a central part of most IEPs.</div><div><br /></div><div>For the purposes of this post, we will be looking at the term through a nondisabled lens. </div><div><br /></div><div><b>TONIA:</b> I honestly despise the term self-advocacy because it seems to now be exclusively used by nondisabled people about us. They never use the term about themselves. It seems to be something they feel they need to teach us.</div><div><br /></div><div>It grates on me the same way “special needs” does in the sense that I don’t believe we need a special term for something that everyone does.</div><div><br /></div><div><b>TARA:</b> It does feel like a redundant (and harmful) euphemism!</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>Isn’t self-advocacy a good thing?</b></div><div><br /></div><div><b>TARA:</b> Is standing up for oneself good? Sure. However, self-advocacy on its own in the face of systemic oppression does not lead to systemic change. Self-advocacy is now largely used to place the onus of systemic oppression onto disabled people.</div><div><br /></div><div><b>TONIA:</b> Thank you for summing this up so well!</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>How is self-advocacy connected to ableism?</b></div><div><br /></div><div><b>TARA:</b> Self-advocacy attempts are too often not taken seriously. They are fodder for a cute story on Facebook or an “inspirational” moment. The other side of the situation is the reality that sometimes, self-advocacy of a need or a boundary leads to abuse. Both the inclination to minimize and abuse are rooted in ableism. </div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>How is self-advocacy about nondisabled people?</b></div><div><br /></div><div><b>TARA: </b>Nondisabled people will often center themselves or each other in a disabled person’s self-advocacy attempt, because of their role in helping the disabled person to master the skill. Either the disabled person is expected to share the achievement, or their achievement of self-advocacy is solely due to the tireless work ethic of nondisabled individuals in a disabled person’s life. </div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>How might disabled trauma responses be at odds with self-advocacy?</b></div><div><br /></div><div><b>TONIA:</b> My primary trauma response (when not encountering threat or violence) was to fawn -- that is to immediately move to people-please to avoid any conflict.</div><div><br /></div><div>That meant that telling someone who wanted to help me <b><a href="https://toniasays.blogspot.com/2017/09/parenting-kids-with-disabilities_11.html">“I can do it myself”</a></b> felt dangerous. Because as a lot of nondisabled people know, refusing help by nondisabled people can make them mad.</div><div><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqchnrVrVOLkxPGgO0MqsnVgbqai6Vnzw9CNQUQKa1DT7diOi35lU4eQbNcku496i23APqD1BD6CENZxTEiNjCRjXQs-VqkyT5su6RvDktfzgnPifQ6sGv5CkKTJ_UowS5TnrLAZ-zVZk/s448/Screenshot+2021-10-30+3.00.36+PM.png" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="355" data-original-width="448" height="254" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqchnrVrVOLkxPGgO0MqsnVgbqai6Vnzw9CNQUQKa1DT7diOi35lU4eQbNcku496i23APqD1BD6CENZxTEiNjCRjXQs-VqkyT5su6RvDktfzgnPifQ6sGv5CkKTJ_UowS5TnrLAZ-zVZk/s320/Screenshot+2021-10-30+3.00.36+PM.png" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[Tonia and Tara just before their eighth birthday, quietly ogling a wedding cake.]</td></tr></tbody></table><br /><div style="text-align: center;"><br /></div><div><br /></div><div>Being forced to say no to offers of help (even from authority figures) felt like trauma to me and often moved me into my other primary trauma response, which was to freeze. Either way, I was not doing self-advocacy right according to nondisabled people in my life.</div><div><br /></div><div><b>TARA:</b> There is an entire compliance culture that is specifically in place when a person is disabled. Disabled people are expected to endure painful or downright abusive therapies, surgeries or other "treatments." We often rely on a freeze or fawn trauma response as our only course of safety. And then, somewhere down the line in school during an IEP meeting, we are "called out" for the involuntary ways our brains are trying to keep us safe. We are too compliant for the education system. We've failed at being assertive and need a new goal - self-advocacy. This puts the onus of our oppression onto us. Any new issue that pops up is not due to systemic oppression, it is due to our failure to self-advocate. </div><div><br /></div><div>(And if we succeed at it? Well as I shared earlier, that is either <i>really cute</i> or <i>inspiring</i>, or our parents and team pat themselves on the back for doing such a good job with us.)</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>How is self-advocacy weaponized to keep disabled people compliant?</b></div><div><br /></div><div><b>TONIA:</b> Having grown up with self-advocacy as a goal on several of my IEPs, I know firsthand how this goal is used to silence us.</div><div><br /></div><div>My so-called “goals” for self-advocacy were based on my teacher's and or my peers' judgement. They (as nondisabled people unfamiliar with my disability) were in charge of determining what I needed help with and what I did not. </div><div><br /></div><div>So, nondisabled people decided when I needed help. Add to that the layer of forced politeness. I had to “appropriately turn down help.” And I also had to instinctively know when to thank “helpers” who swooped in and gave help I did not need, lest I get noticed by a nondisabled adult and the issue reported at the next IEP meeting.</div><div><br /></div><div>And yes, I went to school a million years ago, but I see evidence of this even today. Nondisabled parents will say: “I taught my child self advocacy, and they used it against me!” when their disabled kid wants to choose their own hairstyle.</div><div><br /></div><div>Self-advocacy is used as a tool to keep us compliant and to control us. Because whenever I (or other disabled people) actually advocate for ourselves? We are called rude or angry or ungrateful. The flipside of this? We are also blamed for being “overly compliant” even as teachers and parents admit having compliant disabled students is easier for them.</div><div><br /></div><div><b>TARA: </b>You touched on a really important point, Tonia. Tone-policing is a major problem for marginalized individuals. When it comes to self-advocacy for us as disabled people, the nondisabled expectation is that we do so in a calm, polite and mild manner. Attempts to stand up for ourselves that fall outside of these expectations are labeled as outbursts. Nondisabled reactions to a disabled outburst can range anywhere from disapproval to punishment, abuse, incarceration or homicide. Multiply marginalized disabled people tend to face more severe reactions to outbursts.</div><div><br /></div><div><b>WHAT CAN YOU DO?</b></div><div><br /></div><div>- Make it safe (no consequences) for a disabled person to communicate a limit.</div><div><br /></div><div>- Recognize that everyone naturally advocates for themselves, because everyone communicates in some way.</div><div><br /></div><div>- Don’t put limits around ways disabled people can advocate. Don’t force face-to-face interaction, verbal communication or politeness.</div><div><br /></div><div>- Trust the disabled person in your life if they indicate that they are encountering ableism.</div><div><br /></div><div>- Don’t expect a disabled person to navigate ableism alone.</div><div><br /></div><div>- Use your privilege! (Everyone has some!) Safe and effective advocacy against systems of oppression requires the partnership of nonmarginalized (or more privileged) persons. </div><div><br /></div><div style="text-align: center;"><span id="docs-internal-guid-b207833d-7fff-59b5-ce01-ab0b2e1f869b"><div>***</div><div><br /></div><div><i>Don't forget to connect on <b><a href="https://www.facebook.com/toniasaysblog/">Facebook</a> / <a href="https://twitter.com/Tonia_Says">Twitter</a> / <a href="https://www.instagram.com/tonia_says/">Instagram</a></b></i></div><div><i><br /></i></div><div><i><br /></i></div></span></div></div>Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.com1tag:blogger.com,1999:blog-4060372686205861977.post-42027292101383956292021-11-15T10:00:00.002-06:002021-11-15T10:00:00.168-06:00Let's Talk About Cerebral Palsy and High Pain Tolerance<div style="text-align: center;"><b>1,029 words</b></div><div style="text-align: center;"><b>8 minute read</b></div><div><br /></div>I'm thirteen years old, when I visit a wave pool for the first time.<div><br /></div><div><i>"Do you want to get in?"</i></div><div><i><br /></i></div><div>I do. I get help in. My wheelchair remains near the edge of the pool.</div><div><br /></div><div>The water is shallow. Around my waist as I sit, perhaps a few inches deep. I recline on my hands and enjoy the feeling of the water.</div><div><br /></div><div>I have no context for this experience. I've grown up with plastic kiddie pools. Water that stays where it's meant to stay.</div><div><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDYfYWsfeM77N7hfCnL0LfHO5YXmjSECs48CzVS175PpasWmRPE0YPmNu9F80sM4uMbK-Ktgbz7GoSIuYyrVbJVpx8vJO-zfDOEbUEDVuUo1mYs8VAFf9zD65z1QC6kieOVfLqqHQhyng/s363/Screenshot+2021-08-08+12.43.39+PM.png" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="304" data-original-width="363" height="268" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDYfYWsfeM77N7hfCnL0LfHO5YXmjSECs48CzVS175PpasWmRPE0YPmNu9F80sM4uMbK-Ktgbz7GoSIuYyrVbJVpx8vJO-zfDOEbUEDVuUo1mYs8VAFf9zD65z1QC6kieOVfLqqHQhyng/s320/Screenshot+2021-08-08+12.43.39+PM.png" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[Tara, left, and Tonia, right, in a kiddie pool at age 6.]</td></tr></tbody></table><br /><div style="text-align: center;"><br /></div><div>Then, the waves start.</div><div><br /></div><div>Rather than the gentle rocking I had anticipated, these are bigger waves. Waves that can easily upend me if I'm not braced on my arms. It's how I keep my balance. The result is, I'm slammed into the cement multiple times at an uncontrolled speed.</div><div><br /></div><div>It's all I can do to hold on. To keep my hands in position and not let go. </div><div><br /></div><div>I think about chancing it and crawling the few feet to the side, but the bottom of the pool is so hard, and I have no way of knowing when the waves will hit. I have a system that keeps me alive, right now. If I try crawling and a wave tips me over, what then?</div><div><br /></div><div>I want to get out, but I just got help <i>in</i>. </div><div><br /></div><div>Better to wait until help is offered again.</div><div><br /></div><div><i>I hope someone offers me help out.</i></div><div><i><br /></i></div><div>Waves are coming every 60 to 90 seconds. They slam me into the cement over and over again.</div><div><br /></div><div>I don't cry out. I don't make any noise at all.</div><div><br /></div><div>But that's not because it doesn't hurt. It does. Badly.</div><div><br /></div><div>It's because pain is something that garners disgust. It attracts blame: (<i>"What did you do to yourself?"</i>) And then, it's quickly brushed off and moved past.</div><div><br /></div><div>I watch everyone else play in the deeper end.</div><div><br /></div><div><i>Maybe they'll be done soon...</i></div><div><i><br /></i></div><div>A little girl come to sit near me. I'd like to talk to her, but I'm shy, and all my energy is being consumed by making sure these waves don't knock me over.</div><div><br /></div><div>Waves continue to come.</div><div><br /></div><div>It hurts to sit, and it hurts more when waves come and slam me.</div><div><br /></div><div>An hour passes like this. Maybe more.</div><div><br /></div><div>Finally, everyone is done, and I get help out.</div><div><br /></div><div>Relieved, I sit in my wheelchair, but wince and shift my weight forward abruptly at the pain that sitting causes -- even in my chair -- even on its cushion.</div><div><br /></div><div>Bathing that night in the hotel bathroom is almost unbearable. I fold a washcloth into quarters and place it under me, so I can stand sitting in the tub.</div><div><br /></div><div>Over the next few days, I look for reasons to stand up and walk around, even though my wheelchair is here to save my stamina.</div><div><br /></div><div>Once home, I continue my washcloth-quartering in order to be able to tolerate bathing. I do this for <i>months </i>because the pain is still present.</div><div><br /></div><div>I accustom myself to it.</div><div><br /></div><div>I don't know when it stops being unbearable. Only that it does.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;">It's only as an adult that I've learned what actually happened to me in that wave pool:</div><div style="text-align: left;"><br /></div><div style="text-align: left;">I broke my tailbone.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Bruised tailbones heal in four weeks. I was still tending mine in the fall and winter months after we returned from vacation. Broken tailbones take two to four months to heal.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">This kind of thing is often chalked up to 'high pain tolerance.'</div><div style="text-align: left;"><br /></div><div style="text-align: left;">The thing is -- as Tara has said before -- <b><a href="https://toniasays.blogspot.com/2021/09/when-cp-leads-to-falling-and-falling.html">"Pain is not an alarm system for us, but something expected that we must tolerate."</a></b></div><div style="text-align: left;"><b><br /></b></div><div style="text-align: left;">I had been forced to tolerate intolerable pain since I was a five-day-old preemie. When we are forced to withstand torture when most babies are still safely inside their mothers -- is it any wonder that I didn't say anything about my pain?</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Because, of course it hurt.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">But did it hurt like the<b> <a href="https://toniasays.blogspot.com/2021/10/medical-trauma-and-cp.html">medical trauma</a></b> of my infancy? Did it hurt like having <b><a href="https://toniasays.blogspot.com/2019/12/when-i-wanted-magic-nursery-holiday.html">13 surgeries at once</a> </b>as a 10 year old?</div><div style="text-align: left;"><br /></div><div style="text-align: left;">No?</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Then, I was probably good with just keeping quiet about it.</div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;">Here's what I need people to understand:</div><div style="text-align: left;"><br /></div><div style="text-align: left;">If medical professionals are going to recommend off-the-charts painful medical procedures to babies and children with CP, we are going to have a different relationship with pain.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">If therapists encourage our grown-ups to ignore us when we cry and scream through painful range of motion exercises? We are going to have a different relationship with pain.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">We are going to stuff it down. We're going to dissociate just to get through it.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Because we have no choice.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">But that<i> doesn't mean it doesn't hurt</i>. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">It just means, we learned far too early that no one responds to us if we show that it does.</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><div>The stuff I have been through? As a baby and as a child? It would bring nondisabled people to their knees.</div><div><br /></div><div>But I need you to realize what would have a nondisabled person screaming and writhing in pain, might only make me shift my weight and look for more opportunities to stand up, as it did when I was thirteen.</div><div><br /></div></div><div style="text-align: center;">***</div><div style="text-align: left;"><br /></div><div style="text-align: left;">If you are the grown-up in a the life of a child with CP, I need you to know a few things: </div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>- Just because a kid with CP can't show their pain the way pain is traditionally shown, that does not mean we are not feeling any.</b> It doesn't necessarily mean they "got over that Botox really quickly." Or that they are "resilient" or "tough." It means they need you to pay attention to what they <i>can</i> show.</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>- Know that our pain scale is likely calibrated way higher than a nondisabled person's. </b>That means pain signals will be subtle. Look for them. Learn them, and tend to them in the same way you would a nondisabled kid with traditional pain signals.</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>- Your nonverbal child is still giving you signals.</b> So make a habit of checking them for injuries or pain. Know there is <i>always</i> a reason when they cry (and that by crying, they <i>are</i> communicating with you.)</div><div style="text-align: left;"><br /></div><div style="text-align: center;"><div style="text-align: left;"><div style="text-align: center;">***</div></div><div><br /></div><div><i>Don't forget to connect on <b><a href="https://draft.blogger.com/blog/post/edit/4060372686205861977/2611864409909275077#">Facebook</a> / <a href="https://draft.blogger.com/blog/post/edit/4060372686205861977/2611864409909275077#">Twitter</a> / <a href="https://draft.blogger.com/blog/post/edit/4060372686205861977/2611864409909275077#">Instagram</a></b></i></div></div><div style="text-align: left;"><br /></div><div style="text-align: left;"> </div>Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.com2tag:blogger.com,1999:blog-4060372686205861977.post-36174169012705360212021-11-08T10:00:00.000-06:002021-11-08T10:00:00.177-06:00Ask Disabled People For Consent Before Sharing Your Access / Ableism Rant<div style="text-align: center;"><b>668 words</b></div><div style="text-align: center;"><b>5 minute read</b></div><div><br /></div>We've all been there.<div><br /></div><div>Somebody was just super ableist, or "nicely" ableist, or somewhere public was not as accessible as it should have been.</div><div><br /></div><div>What do you do?</div><div><br /></div><div>What human instinct leads all of us to do, I bet.</div><div><br /></div><div>You tell your disabled friend, because we're the ones who "get it" the most.</div><div><br /></div><div>But wait.</div><div><br /></div><div>Before you video call, or text or rage tweet your disabled friend about how inaccessible an event is, I want to tell you a story.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;">A few months ago, a friend messaged us in exactly this moment.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">They were somewhere and the access just wasn't up to par. When they approached someone in charge about it? This person was less than understanding.</div><div style="text-align: left;"><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZTgQLh1hy64giil1ENTl1Z1YQ5VQf5n96ncaD46EHFMSErHnXhOlj2Fx-eawtDrVUGTJn0S2jCbmTbu4SrkpYR7dCO7CLwv2saZtMfhXnTXm3-DhSz5JQoZwQPKD9g8PorDGhlOQ49m8/s2048/EFalX5OWwAMPH77+%25281%2529.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZTgQLh1hy64giil1ENTl1Z1YQ5VQf5n96ncaD46EHFMSErHnXhOlj2Fx-eawtDrVUGTJn0S2jCbmTbu4SrkpYR7dCO7CLwv2saZtMfhXnTXm3-DhSz5JQoZwQPKD9g8PorDGhlOQ49m8/s320/EFalX5OWwAMPH77+%25281%2529.jpeg" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[Image: Uncarpeted stairs and an unstable railing lead to an entryway littered with shoes and rugs.]</td></tr></tbody></table><br /><div style="text-align: center;"><br /></div><div style="text-align: left;">The friend came to Tara and I, and let out all of their feelings at the injustice of what had just happened in a flurry of Facebook messages. Tara and I were startled. To us, the rant came out of nowhere.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">This was complicated further because our friend is nondisabled. And I've since made no secret of the fact that hearing this person so angry about access barriers brought me right back to every moment in my life, when nondisabled family members had gone on similar rants.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">One, in particular, was nudged awake.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">I was in my twenties and had gone to support my youngest sibling on Track and Field Day. Another family member (nondisabled) also stayed, and ended up commenting all day long on how inaccessible the outdoors of the elementary school was.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Because it was an outdoor event that lasted several hours, I was faced with various access barriers: grass, dirt, lack of curb cuts. You name it, it was there. But I was used to it. I couldn't (and can't) get mad as a wheelchair user every time I can't get somewhere. I'll have no energy left if I do.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">But the family member with me? They ranted all day, while pushing me, so their words about the lack of access rained down solely on my head. For hours. It didn't matter if I answered back. My nondisabled family member's anger mattered. That's what was centered.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">By the time we were home, their anger had not blown over.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">I tried to reason with them:</div><div style="text-align: left;"><br /></div><div style="text-align: left;">"I deal with this every single day. It's fine. Don't worry about it."</div><div style="text-align: left;"><br /></div><div style="text-align: left;">But their anger still took center stage:</div><div style="text-align: left;"><br /></div><div style="text-align: left;">"<i>No</i>! This is <i>wrong</i>! I can't believe it's like this! I'm sending an email!"</div><div style="text-align: left;"><i><br /></i></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;">The thing that gets missed in moments like this is that as the person with access needs? As the person who has experienced access barriers and ableism my whole life? I come away from that rant from a friend feeling like I am the problem. Like it's my fault.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">It brings back years of those old feelings.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">After all, I was, historically, the reason that my nondisabled family would notice and get mad about access barriers. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">So it can get tricky, especially when you are nondisabled and want to share about how the public was inaccessible to your loved one. </div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;">Thankfully, in most of my friendships, we ask for consent before sharing an access or ableism rant (especially the nondisabled friends -- but even the disabled ones!) We know that by sharing with each other we may be unearthing a lifetime of pain, and we want to be sure that the other person at least gets the opportunity to consent.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">The disabled / nondisabled (and neurotypical / neurodivergent) cultural divide is complicated to navigate at best. We have definitely had bumps in the road -- particularly in interabled friendships.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">But with awareness and care, these friendships can be kept.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">When we mentioned to our friend that we'd appreciate being asked before they shared such a rant again? We saw this in response:</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><i>"So sorry about that. I will do better next time."</i></div><div style="text-align: left;"><i><br /></i></div><div style="text-align: left;"><div style="text-align: center;"><span style="font-family: inherit;">***</span></div><div style="text-align: center;"><span style="font-family: inherit;"><br /></span></div><div style="text-align: center;"><span style="font-family: inherit;"><i>Don't forget to connect on <b><a href="https://www.facebook.com/toniasaysblog/">Facebook</a> / <a href="https://twitter.com/Tonia_Says">Twitter</a> / <a href="https://www.instagram.com/tonia_says/">Instagram</a></b></i></span></div><div style="text-align: center;"><span style="font-family: inherit;"><i><br /></i></span></div><div style="text-align: center;"><span style="font-family: inherit;"><i><br /></i></span></div></div>Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.com0tag:blogger.com,1999:blog-4060372686205861977.post-45431115315012960422021-11-01T10:00:00.002-05:002021-11-01T23:06:52.986-05:00Cerebral Palsy FAQ<div style="text-align: center;"><b>932 words</b></div><div style="text-align: center;"><b>7 minute read</b></div><div><br /></div><div>I'm a part of a couple CP groups and follow several pages by parents about CP, and I tend to see the same questions popping up over and over.</div><div><br /></div><div>So I thought a post was in order. An easy, one-stop post that answers these questions once and for all.</div><div><br /></div><div style="text-align: center;">***</div><b><div><b><br /></b></div><div><b><br /></b></div>What is Cerebral Palsy?</b><div><b><br /></b></div><div>Cerebral Palsy is brain damage that affects the signals sent to muscles in different parts of our bodies. (From just one, to all four limbs.) It impacts our ability to balance, our coordination, our strength and our posture.</div><div><br /></div><div style="text-align: center;">***</div><div><b><br /></b></div><div><b>Can Cerebral Palsy be cured?</b></div><div><b><br /></b></div><div>No.</div><div style="text-align: center;"><div><br /></div></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgohvmssU5witCkWZAXrRU96vb9jQyQZ27NdIrxBYiJyP9Tmwx7RjUiInSPs7c0M1edSfAVgvvfW8T87-2RgMC-n9gGjep8FSTDcoSA9GOoT0DB35ua2eFxry00Ve2cb2Oedl5Gz55baf8/s361/Screenshot+2021-07-10+11.44.23+AM.png" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="360" data-original-width="361" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgohvmssU5witCkWZAXrRU96vb9jQyQZ27NdIrxBYiJyP9Tmwx7RjUiInSPs7c0M1edSfAVgvvfW8T87-2RgMC-n9gGjep8FSTDcoSA9GOoT0DB35ua2eFxry00Ve2cb2Oedl5Gz55baf8/s320/Screenshot+2021-07-10+11.44.23+AM.png" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[Image: Photo caption reads "Tonia - 11/22/81 - 5 months]</td></tr></tbody></table><br /><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>Help! My baby with CP is not reaching milestones! Are they okay???</b></div><div><b><br /></b></div><div>CP is a developmental disability. </div><div><br /></div><div>That means they will be on their own timetable when achieving milestones. </div><div><br /></div><div>Some with CP will walk after their second birthday, for example. Others, like me, may be unable to walk without adaptive equipment. Still others may not be able to walk at all.</div><div><br /></div><div>Grasping, rolling over, talking, sitting, standing and potty training all are included in possible areas you might see delays. </div><div><br /></div><div>This developmental delay sometimes includes growing (if your baby was a preemie and / or spent a long time in the hospital.) And even teething. My sis and I did not start teething until 14 months. As kids, we lost teeth late. (I didn't start losing my baby teeth until after my seventh birthday.)</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><b>But my baby's doctor said their CP was mild! Why aren't they doing X, Y, Z yet?</b></div><div style="text-align: left;"><b><br /></b></div><div style="text-align: left;">When you replace "CP" with "brain damage" perhaps it will make more sense when I say that "mild" brain damage is still brain damage. Your baby still has CP which will still impact them in various ways.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">(Also functioning labels stigmatize. Those with more involved CP are often more isolated and spoken over / spoken for. And those with less involved CP are often put under pressure to perform closer to a nondisabled standard, which is not always possible.)</div><div style="text-align: center;"><br /></div><div style="text-align: center;">***</div><div><b><br /></b></div><div><b>But should I look into Botox? Surgery? Therapy?</b></div><div><b><br /></b></div><div>If so, you should also look seriously into <b><a href="https://toniasays.blogspot.com/2021/10/medical-trauma-and-cp.html">Medical Trauma and CP</a></b>.</div><div><br /></div><div>In my opinion, <b><a href="https://toniasays.blogspot.com/2019/12/when-i-wanted-magic-nursery-holiday.html">surgery</a></b> and Botox should be a last resort. And <b><a href="https://toniasays.blogspot.com/2020/06/therapy-series-when-everything-is.html">therapy</a></b> should be done with an eye toward what your child wants to learn, and perhaps, pain management. </div><div><br /></div><div>Kids with CP deserve childhoods.</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>How and when can I tell my child they have CP?</b></div><div><b><br /></b></div><div>Check out<b> <a href="http://www.ellenstumbo.com/episode12/">How and When to Talk to Your Kids About Their Disability</a></b></div><div><b><br /></b></div><div style="text-align: center;">***</div><div><b><br /></b></div><div><b>When did you first know you had CP?</b></div><div><b><br /></b></div><div>I've always known I had CP, but not because of a sit-down conversation anyone had with me. I listened at doctor's appointments. I listened as my classmates were told about me and my CP. And my sister also has CP, so we saw it in each other our whole lives.</div><div><br /></div><div>But the result of not being told directly and not having CP be an open conversation, I felt a lot of shame around it. It was never brought up around my house growing up, except in a negative context.</div><div><br /></div><div style="text-align: center;">***</div><div><b><br /></b></div><div><b>Why is my kid with CP having accidents even though they are potty-trained?</b></div><div><b><br /></b></div><div>"Holding it" can be difficult for those of us with CP, because it's hard to isolate <i>just </i>those muscles. </div><div><br /></div><div>With CP -- it can often feel like "all or nothing" in terms of muscle-engagement. So your child may "hold it" but then not be able to move, and when they do move? They may not make it to the bathroom in time. </div><div><br /></div><div>It also is a common issue, I think, for some of us with CP to not necessarily know exactly when we have to go unless it's super obvious / almost too late. </div><div><br /></div><div>That said, be patient. Be understanding. Know your child is not being naughty. If they are hiding wet clothes or bedding, it is likely out of shame. </div><div><br /></div><div>Talk to them calmly. Apologize if necessary. "I'm sorry for losing my temper. I didn't understand, but now I know you're not doing this on purpose. You can always tell me if you need something washed. I'll wash it for you and I won't get mad."</div><div><br /></div><div>And if they need it, look into pads for incontinence -- even if they are not fully incontinent -- this helps to keep things drier.</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>How did you deal with the emotional side of things and feeling like a burden? What did you need from your grown-ups?</b></div><div><b><br /></b></div><div>As kids, we need to hear that you are happy to help us.</div><div><br /></div><div>When you say this, make sure your face and voice matches the words you're saying. If you're gruff or impatient, or snap at us. We get an inconsistent message and may still come away from a situation feeling as though we did something wrong.</div><div><br /></div><div>So, make sure your kid sees your love for them. Talk about a family member or friend <i>they </i>love to help. And then tell them, "It's like that. That's how I feel about you. I always want you with us."</div><div><br /></div><div style="text-align: center;"><div><span style="font-family: inherit;">***</span></div><div><span style="font-family: inherit;"><br /></span></div><div style="text-align: left;"><span style="font-family: inherit;"><b>I really want my kids to have friends. My kid's school has offered to assign them a friend. Isn't this a good thing?</b></span></div><div style="text-align: left;"><span style="font-family: inherit;"><b><br /></b></span></div><div style="text-align: left;"><span style="font-family: inherit;">Check out:<b> <a href="https://toniasays.blogspot.com/2021/09/the-danger-of-forced-friendships.html">The Danger of Forced Friendships Between Disabled Kids and Nondisabled Peers</a></b></span></div><div><span style="font-family: inherit;"><br /></span></div><div><span style="font-family: inherit;">***</span></div><div><span style="font-family: inherit;"><br /></span></div><div style="text-align: left;"><span style="font-family: inherit;"><b>Are there any books out there that <i>won't </i>make my kid feel like they are the worst for having CP or being disabled?</b></span></div><div style="text-align: left;"><span style="font-family: inherit;"><b><br /></b></span></div><div style="text-align: left;"><span style="font-family: inherit;"><b><a href="https://drive.google.com/file/d/0Bx16bX4Ky2yoSWFSMlQ5VXlQaGs/view?resourcekey=0-wzg96_HahDk3ovC8jluCxA">All About CP and Me</a></b></span></div><div style="text-align: left;"><span style="font-family: inherit;"><br /></span></div><div style="text-align: left;"><span style="font-family: inherit;"><b><a href="https://toniasays.blogspot.com/2020/01/we-belong-middle-grade-novel.html">We Belong</a></b></span></div><div style="text-align: left;"><span style="font-family: inherit;"><br /></span></div><div style="text-align: left;"><span style="font-family: inherit;"><b><a href="https://www.amazon.com/Mia-Wheeling-Through-Middle-School/dp/0692746900">Mia Lee is Wheeling Through Middle School</a></b></span></div><div style="text-align: left;"><span style="font-family: inherit;"><br /></span></div><div style="text-align: left;"><span style="font-family: inherit;"><b><a href="https://www.amazon.com/Chance-Fly-Ali-Stroker/dp/1419743937">The Chance to Fly</a></b></span></div><div style="text-align: left;"><span style="font-family: inherit;"><br /></span></div><div style="text-align: center;"><span style="font-family: inherit;">***</span></div><div><span style="font-family: inherit;"><br /></span></div><div><span style="font-family: inherit;"><i>Don't forget to connect on <b><a href="https://www.facebook.com/toniasaysblog/">Facebook</a> / <a href="https://twitter.com/Tonia_Says">Twitter</a> / <a href="https://www.instagram.com/tonia_says/">Instagram</a></b></i></span></div><div><span style="font-family: inherit;"><i><br /></i></span></div><div><span style="font-family: inherit;"><i><br /></i></span></div></div>Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.com0tag:blogger.com,1999:blog-4060372686205861977.post-4650962283230721672021-10-25T10:00:00.000-05:002021-10-25T10:00:00.234-05:00Medical Trauma and CP<div style="text-align: center;"><b>2,847 words</b></div><div style="text-align: center;"><b>22 minute read</b></div><div style="text-align: center;"><i><b><br /></b></i></div><div style="text-align: center;"><i><b>Read with caution</b></i></div><div><i><br /></i></div><div><i>"So, you have a little bit of White Coat Syndrome..."</i></div><div><i><br /></i></div><div><i>"Well, I don't like going to the doctor either, but..."</i></div><div><br /></div><div>These sentiments and more are the types of things I hear when I mention I have medical trauma. But medical trauma is more than just not liking going to the doctor.</div><div><br /></div>Medical trauma is what it sounds like: trauma that stems from enduring medical procedures, illness or prolonged hospital stays. Pediatric medical traumatic stress is a child's response to an invasive or frightening treatment and / or medical procedures.<div><br /></div><div>There aren't a lot of resources out there that discuss medical trauma and CP. So, as I do, when I can't find information...I'm creating it.</div><div><br /></div><div>Let me say upfront that I am not a medical expert. What I am is a survivor of years of medical trauma. Medical trauma that was -- yes, I'll say it -- largely unnecessary.</div><div><br /></div><div>In my case? Even the necessary was torture.</div><div><br /></div><div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div>These are the pieces of my history put together myself: </div><div><br /></div></div><div>When I was a five-day-old newborn, I endured heart surgery without anesthesia.</div><div><br /></div><div>At four months old, I had two throat surgeries, a week apart -- and again -- without anesthesia.</div><div><br /></div><div><div>This is because, prior to 1987, premature babies only given paralytics for major surgery. We were not anesthetized because it was believed we could not feel pain. So, I was operated on three times, while fully conscious, but unable to move.</div><div><br /></div><div>My family was two and a half hours away and received updates by phone. I had no one waiting for me. After that first surgery, it was eight more days before anyone could come and hold my hand.</div><div><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDm-f0ZrX1CJ2nnzKfmk-oUjm8ygFsXxVErTJBt5aFG-ox9XK1DuN9_O6sExpEYqb6I0sDpHl02F0h8SPn_5kZdwBvmz_0XriQx1yQqBRJ7L7LBrLMjO0MBVfKwmFtpvVC5T4UrpMyzdc/s349/Screenshot+2021-06-11+9.39.14+PM.png" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="349" data-original-width="333" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDm-f0ZrX1CJ2nnzKfmk-oUjm8ygFsXxVErTJBt5aFG-ox9XK1DuN9_O6sExpEYqb6I0sDpHl02F0h8SPn_5kZdwBvmz_0XriQx1yQqBRJ7L7LBrLMjO0MBVfKwmFtpvVC5T4UrpMyzdc/s320/Screenshot+2021-06-11+9.39.14+PM.png" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[Image: Tonia, 13 days old -- 8 days after major heart surgery. Part of the large bandage is visible on her back.]</td></tr></tbody></table><br /><div><br /></div><div>These are only the procedures I had that I'm aware of.</div><div><br /></div><div>There are likely more "less invasive" interventions that were also given without anesthetic, like bronchoscopies, which I had more than once as a baby.</div></div><div><br /></div><div>Yes, I needed these procedures to stay alive, but the medical trauma I endured? </div><div><br /></div><div>That's unparalleled.</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div>I lived in the NICU for the first 11 months of my life. </div><div><br /></div><div>I was surrounded by monitors, sounds of distress, and I endured unimaginable pain and suffering. My family lived two hours away and could only visit once a week. I only saw my twin sister a few times over eight months after she was released.</div><div><br /></div><div>The affects of these early traumas were evident as early as two years old, when I apparently fought an eye doctor so hard he could not complete the tests he intended to run. In his words, I was "uncooperative."</div><div><br /></div><div>But in mine?</div><div><br /></div><div>I was traumatized.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;">And that was just the beginning. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">I endured five different non-lifesaving surgeries between the ages of three and eleven years old. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">These surgeries were rarely singular orthopedic events, and more often, I had multiple operations at once: four incisions at once when I was three years old. Thirteen incisions at once when I was ten years old. Two more at once when I was eleven years old. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">In total, my surgical scars number more than twenty. And at a few of those locations, I've been operated on more than once. (One did not leave a visible scar at all, but did leave lasting trauma.)</div></div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Here's the thing I need you to hear: most of the time? I didn't act traditionally traumatized. I went along with surgeries because I had no choice. I stopped crying when I had bloodwork done by the time I was three. Instead of recognizing this lack of reaction as trauma, I was called "brave" or "good."</div><div style="text-align: left;"><br /></div><div style="text-align: left;">But I was neither.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">I was dissociating. Coping in the only way I could, because I was enduring these things against my will.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Just because you don't see symptoms does not mean we are not suffering immensely.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">And when I could not dissociate? My pain and trauma did not matter...because the doctor's orders mattered more.</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>Related: <a href="https://toniasays.blogspot.com/2020/12/the-bed-thing.html">The Bed Thing</a></b></div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div style="text-align: left;"><br /></div><div style="text-align: left;">People with CP -- even adults -- are forced into nonconsensual, non-lifesaving medical interventions all the time. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">In December of 2016, Just after speaking out about experiencing a <b><a href="https://toniasays.blogspot.com/2021/03/things-i-want-to-tell-you-but-cant.html">super unsafe inaccessible home</a></b>, a family member in the medical community suggested that I get PT and a Baclofen pump. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">I nearly blacked out at the words. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">After my entire childhood was marked by unnecessary surgeries, here was another being suggested. All so nondisabled members of my family could avoid providing basic access and safety features in their house.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">The trauma it brought on was real. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">And the pain of those words...I can't explain how it feels to be brave enough to tell someone "I need accommodations," and to hear, in essence, "I need you to suffer through unimaginable pain instead."</div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div style="text-align: left;"><br /></div><div style="text-align: left;">It's been said here before, but I think it bears repeating: nondisabled people get medical intervention for the most part when they choose it. Because it's something they want for themselves for some reason, or it will help their pain. (They even choose Botox for themselves, but they don't get it in super tense muscles because that would be even more painful and ludicrous -- and they wouldn't insist on it for their nondisabled child!)</div><div style="text-align: left;"><br /></div><div style="text-align: left;">But as disabled people, we are often not given this basic right. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">I have friends who were forced into getting Botox injections as kids (sometimes without anesthesia), some acquaintances who still feel pressured to go along with their parents' wishes for them to get Botox as an adult.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">It is traumatizing.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">And we don't just get over it.</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>Related: <a href="https://toniasays.blogspot.com/2020/01/why-just-forget-and-move-on-is.html">Why 'Just Forget and Move On' Is Dangerous Advice When Discussing Trauma and Disability</a></b></div><div style="text-align: left;"><br /></div><div style="text-align: left;">No nondisabled adult would choose to put themselves or their nondisabled 3 year old, or 10 year old through multiple-incision surgeries. Especially if they didn't need such drastic medical intervention to survive.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Before all my non-lifesaving surgeries, I felt fine. I wasn't in any pain at all. I felt normal.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">But instead of being able to carry on being a kid and playing with my siblings, I went through the <a href="https://toniasays.blogspot.com/2017/07/parenting-kids-with-disabilities-surgery.html"><b>trauma of anesthesia</b></a>, the <b><a href="https://toniasays.blogspot.com/2019/12/when-i-wanted-magic-nursery-holiday.html">torture of recovery</a></b> and the <b><a href="https://toniasays.blogspot.com/2020/06/therapy-series-when-everything-is.html">abuse of rehab / therapy</a></b>. All for what? So I could reach some nondisabled ideal of what's normal?</div><div style="text-align: left;"><br /></div><div style="text-align: left;">It wasn't necessary.</div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;">This is why you'll see me react so strongly to nondisabled parents who share about their kid with CP going through unnecessary medical interventions. Because whether it's the latest and greatest promise from a doctor that your kid will get "new legs" after the surgery, or will somehow not need previously necessary mobility aids.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Even treatments given to reduce spasticity and related pain (Botox injections) seem barbaric to me when chosen by a nondisabled parent for their disabled child. Not the least of which because there are non-invasive pain relief options available. There are things to try that may actually soothe tense muscles instead of causing unimaginable pain. (Like gentle massage. Like a warm bath. Like topical pain relief creams.)</div><div style="text-align: left;"><br /></div><div style="text-align: left;">The younger the child is, the greater my fear is for them.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Because, contrary to popular opinion? The younger a child is, the greater impact trauma has on them. (See <u>What Happened to You?</u> by Dr. Bruce Perry and Oprah Winfrey for more.)</div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;">It's June, 2021. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">I've decided to check out the musical <i>Next to Normal.</i></div><div style="text-align: left;"><i><br /></i></div><div style="text-align: left;">I've been hesitant about it for a while, but finally decided to give it a try, knowing that it shares the same writer as my current focused interest <i>13 Reasons Why</i> (on Netflix).</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Maybe fifteen minutes in, I start noticing discomfort in my arm. It's the kind of pain I traditionally have on the CP side of my body, but this exists in my only unaffected limb. From shoulder blade to wrist, it's locked up with tension. No matter how I position it, there's pain.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">I leave the room a couple of times to try different pain relief options -- and they barely make a dent.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Tara asks, "Should we pause it?" several times during our viewing but I want to see it, and I know if I stop early, I won't finish it. At this early stage, I don't think about trauma. Yes, I don't like the medical content, but I'm a Grey's Anatomy fan, so clearly I can handle this...right?</div><div style="text-align: left;"><br /></div><div style="text-align: left;">There's significant invasive, intensive medical trauma depicted in this musical and alluded to throughout. I cope by being out of the room for the duration of the most intense scenes and by heeding Tara's warnings about what's coming up next.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">I insist we keep watching. Tara's already seen it. I want to share this with her and another friend, who has sung the musical's praises for months.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">I watch the entire thing -- all two hours and three minutes of it.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">It's afterward, when discussing it with a friend, when I realize I am triggered.</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><i>Did you like it</i>? they ask, and I stall.</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><i>I actually wanted to hear why you like it.</i></div><div style="text-align: left;"><i><br /></i></div><div style="text-align: left;">(It's not a lie. I do. I love hearing about what people in my life enjoy.) </div><div style="text-align: left;"><br /></div><div style="text-align: left;">As they share, I'm aware of tension blocking my throat. Tension all through my body, channeled down that one arm.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Around the same time, Tara asks, "What did you think?"</div><div style="text-align: left;"><br /></div><div style="text-align: left;">And when I try to answer, I'm stunned to find myself close to tears:</div><div style="text-align: left;"><br /></div><div style="text-align: left;">"I....um....I can see why you liked it... The music was really good. I just... I mean... I don't know how to..."</div><div style="text-align: left;"><br /></div><div style="text-align: left;">My words are gone. There's actual tension blocking them, but even behind the tension, there is nothing. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">I have no words.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">It's like they vanish entirely.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">"Was it kinda heavy?" Tara asks, giving me some.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">"Yeah," I agree. "It was kinda heavy."</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Meanwhile, I tell our friend, in response to their question about if I liked it:</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><i>Honestly? It's a little </i>too <i>medical for me to feel safe watching. I def feel like I'm a little triggered.</i></div><div style="text-align: left;"><i><br /></i></div><div style="text-align: left;">The rest of the night, friends ask me how I am, and I can't speak. Their well-meaning questions, (<i>"Want to share more</i>?") trigger even more tension, even more overwhelm and feeling stuck and powerless. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">Because I <i>can't share more</i>. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">I respond with an abrupt and ineloquent, <i>Like, literally no.</i></div><div style="text-align: left;"><i><br /></i></div><div style="text-align: left;">Tara spends the rest of the night telling me, "I miss you," because I can't talk to her. I want to. But I can't. The only chance I have for words to come is if I'm sufficiently distracted.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">(Somehow, too, I persist in feeling left out of the conversation that Tara and our friend are having about the musical. Even though I know it's triggering me, I still hate feeling left out.)</div><div style="text-align: left;"><br /></div><div style="text-align: left;">I comfort myself drawing <b><a href="https://www.instagram.com/p/CP-78vipOIC/">Joanna</a></b>, the monitor lizard from <i>The Rescuer's Down Under</i> (because I'm in my 'lizard brain.' A traumatized brain -- like a lizard's -- can't tell if a trauma is happening right now, or decades ago.)</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Eighteen hours later, I still go silent -- tense and wordless -- when asked if I'm okay after this trigger. I insist I'm fine as long as we don't talk about it.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Twenty-four hours later, I can finally share the barest details:</div><div style="text-align: left;"><br /></div><div style="text-align: left;">And it sounds silly: </div><div style="text-align: left;"><br /></div><div style="text-align: left;">"My preverbal medical trauma was triggered watching a musical."</div><div style="text-align: left;"><br /></div><div style="text-align: left;">It sounds silly, but it isn't.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">It doesn't escape me that it was June almost four decades ago when I had that heart surgery as a five-day-old preemie. That the tension is localized around my left shoulder blade, the same place my scar from that operation starts. Ten inches long and wrapping around me high on my left side.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">I don't have a conscious memory of this surgery -- of this torture -- but my body carries it.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">And every once in a while, it emerges, a tense and wordless thing. A wall of fear. An enforced stillness that I can't surmount. I just have to ride it out, like a passenger in my own mind, in my own body.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">I can't even wrap my mind around how to comfort the baby I was, because the trauma is still so fresh.</div><div style="text-align: left;"><br /></div><div style="text-align: center;"><div>***</div><div><br /></div><div style="text-align: left;">If you have read this far, and now you're thinking: "Well, I would never do that," I encourage you to pause.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Because while I'm grateful that you realize how off-the-charts painful surgery without anesthesia would be, I want you to recognize that children with CP still endure this in some parts of the world. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">It's not the ancient history we would like it to be.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Both in the US and abroad, kids and adults with CP are forced to go through unbelievably painful Botox injections without anesthesia. From what I understand, this usually occurs because of a combination of a misunderstanding on the doctor's part, when a parent requests a general anesthetic for their child.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">There's also exhaustion and desperation on the parent's part because maybe they have just called out of work and rearranged their entire schedule (and their significant other's and that of more than one kid) to get this done. And everyone's here and it was so hard to get an appointment in the first place...</div><div style="text-align: left;"><br /></div><div style="text-align: left;">They are convinced by the medical community (who is there to fix and heal) that this really is the best option, so an impossible choice is made.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">But even if it only happens one time, we suffer.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">We suffer because we are still dehumanized in medical spaces. While the general population doesn't even get a vaccine without being told "relax your arm" we are put through torturous procedures -- focused on places we <i>can't</i> relax.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">I need you to know that even if you would never do what you have read about here, parents are still told to ignore when their baby with CP cries in that new gait trainer, or throughout that new series of stretches because the end justifies the means.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">I need you to know that children with CP are still <b><a href="https://www.ellenstumbo.com/medical-model-wrong-child-disability/">threatened with surgery</a> </b>at routine doctor's appointments with their parent right there in the room. As a consequence for not stretching. For growing (which can increase spasticity, despite dedicated stretching.)</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Maybe you would never restrain your four year old to sleep (as I experienced) but maybe you would take a doctor's word, to have your child wear their braces twenty-two hours a day. (Not recommended. What is? To wear them as the wearer decides and is comfortable.)</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;">So, what can you do?</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>Pay Attention: </b> Take in the signals your child is giving you. Take them seriously. </div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>Make Medical Decisions Based on Different Criteria:</b> The criteria you would use for yourself or any nondisabled child. Do they need this intervention to stay alive? Do they need this intervention to ultimately mitigate pain?</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>Know That Most Medical Professionals Aren't Specifically Taught About CP: </b>One of my siblings once shared that in his nursing training, they covered CP in a single handout and he already knew everything on it, just from growing up around Tara and me.</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>Take Your Child's Cues: </b>If they are crying or distressed in the midst of a non-lifesaving intervention or with a doctor's words, you can intervene. A lot of people won't take the words or behavior of a person with CP seriously, especially a child. But if you are a nondisabled parent, you have the power. Use it to protect your child.</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>If Your Child Has Medical Trauma, They Won't Just Get Over It: </b>Even if your intentions are the best you've ever had, reframing a day where your child had their autonomy taken away, where they were violated and / or restrained to something positive is only teaching them a lesson in denial. Give them words to talk about it. Give them space to play about it. Help them name their feelings, and help them navigate their triggers.</div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><div>To finish, I want us to consider this question: Is it really worth it to put your child through medically invasive procedures in the interest of achieving <a href="https://toniasays.blogspot.com/2020/06/when-nondisabled-parents-focus-on.html"><b>nondisabled milestones</b></a>?</div><div><br /></div><div>Is <b><a href="https://toniasays.blogspot.com/2020/06/summer-blog-series-2020-when-walking-is.html">walking</a></b> really that important?</div><div><br /></div><div>I'm a full-time wheelchair-user right now, and I'm happy to have a way to safely navigate through the world. A way that does not exhaust me.</div><div><br /></div><div>And I can't begin to say how much I hope that the tide begins to shift with regard to just how quickly those in power positions -- in the medical profession, and nondisabled parents -- make decisions that will stick with those of us with CP for years to come.</div><div><br /></div><div><div>We will carry this trauma in our bodies.</div><div><br /></div><div>We will carry it in our souls.</div><div><br /></div><div>Even if we can't remember it...<i>it</i> remembers <i>us...t</i>he ghost of it rising in us when something nudges it awake.</div><div><br /></div><div>I'm all for lifesaving interventions. I'm all for adults with CP making our own decisions about wanting (or not wanting) medical procedures when we can consent.</div><div><br /></div><div>What I'm asking for is awareness. It's consideration. It's trauma-informed care.</div><div><br /></div><div>And it's a realization that people with CP will always have CP, no matter what. To <b><a href="https://toniasays.blogspot.com/2017/06/parenting-kids-with-disabilities_12.html">accept that</a></b>, and learn to love us, will do you (and us) more good than you can imagine.</div></div></div><div style="text-align: center;"><br /></div><div style="text-align: center;">***</div><div><br /></div><div><i>Don't forget to connect on <b><a href="https://www.facebook.com/toniasaysblog/">Facebook</a> / <a href="https://twitter.com/Tonia_Says">Twitter</a> / <a href="https://www.instagram.com/tonia_says/">Instagram</a></b></i></div><div><i><br /></i></div></div>Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.com1tag:blogger.com,1999:blog-4060372686205861977.post-90418714465867784432021-10-18T10:00:00.002-05:002021-10-18T13:49:36.743-05:00Potentially Overlooked Aspects of Your Child's Transitional IEP<div style="text-align: center;"><b>2,243 words</b></div><div style="text-align: center;"><b>17 minute read</b></div><div><br /></div><div>A few years ago, I was approached by a nondisabled parent about their child's upcoming transitional IEP into middle school.</div><div><br /></div><div><i>"Is there anything we might be overlooking?"</i> I was asked.</div><div><br /></div><div>There was no way I could accurately sum up everything in a conversation, so I made notes. And I kept them.</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>SAFETY (LOCKDOWN & OTHER DRILLS):</b></div><div><br /></div><div>My first IEP of sixth grade there was a stark, one-sentence reference. Something like: “Need to establish [a] safety plan.” It was a month into the new school year at this point and nothing was set. <b><a href="https://toniasays.blogspot.com/2016/01/safety-issues-and-disability.html">People with disabilities are often overlooked when it comes to safety / drills / evacuation plans</a></b>. It is early now. You have time to think and plan. Make sure a plan exists come September.</div><div><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfSg74-KpxllZBzSF8u3DQ4VWmvfE6TI_CtMRSM_RXVRDYthFIsRQ8omJMDo6kK4xemQexttjJEjq_ZC3VZgDjuNQRXwDxPt6cltaCsc4WlNN6AH_mr_L9q6OvGAX2uvywClZOopCz9UY/s241/Screenshot+2021-02-06+at+8.04.07+PM.png" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="241" data-original-width="232" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfSg74-KpxllZBzSF8u3DQ4VWmvfE6TI_CtMRSM_RXVRDYthFIsRQ8omJMDo6kK4xemQexttjJEjq_ZC3VZgDjuNQRXwDxPt6cltaCsc4WlNN6AH_mr_L9q6OvGAX2uvywClZOopCz9UY/s0/Screenshot+2021-02-06+at+8.04.07+PM.png" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[Image: Tonia smiling as a sixth grader]</td></tr></tbody></table><br /><div><br /></div><div><br /></div><div><b>Fire:</b></div><div><br /></div><div>-If there is more than one floor in the school, make sure that your child has all their classes on the ground floor, as well as something like a Tuck-and-Carry (a tarp like piece of fabric - this was provided to me by the school) they can keep in their backpack that can be used by pre-selected staff to safely carry your child down the stairs just in case, should they need to evacuate. Another staff member should follow with your child’s wheelchair.</div><div><br /></div><div><b>Tornado:</b></div><div><b><br /></b></div><div>-Ensure your child is included in all drills. </div><div><br /></div><div>-Know that maintaining balance in a tucked position may be difficult (as stress - even in a drill - impacts our spasticity.) Ask your child if they need support.</div><div><br /></div><div><b>Lockdown:</b></div><div><b><br /></b></div><div><b>Cabinet</b> - If your child is in their desk (on the perimeter of the classroom) have a closet / cabinet / cupboard empty / accessible and as close as possible to your child’s table / desk in each classroom. In the event of a lockdown, your child can shelter there.</div><div><br /></div><div>1. Lockdown is called</div><div><br /></div><div>2. Your child gets in the closet / cabinet / cupboard</div><div><br /></div><div>3. Staff / another pre-selected student closes them in.</div><div><br /></div><div>4. Your child waits quietly until lockdown is called off.</div><div><br /></div><div><b>Corner</b> - If your child cannot access their cabinet location, the teacher or a pre-selected student helps them to the floor in the corner closest to them.</div><div><br /></div><div>1. Lockdown is called</div><div><br /></div><div>2. Teacher / pre-selected student lifts your child out of their chair</div><div><br /></div><div>3. Teacher / pre-selected student moves them to the nearest corner.</div><div><br /></div><div>4. Your child waits quietly until lockdown is called off.</div><div><br /></div><div><b>Hallway</b> - If your child is in the hallway when a lockdown is called, they will go into the nearest classroom and shelter there (see: Cabinet or Corner) until the lockdown is called off.</div><div><br /></div><div><b>Restroom</b> - If your child is in the restroom when a lockdown is called they will:</div><div><br /></div><div>1. Stay in the stall</div><div><br /></div><div>2. Return to the stall ASAP.</div><div><br /></div><div>3. Keep stall door locked (or main bathroom door if a staff bathroom)</div><div><br /></div><div>4. Wait quietly until lockdown is called off.</div><div><br /></div><div><b>Cafeteria / Gym Class:</b></div><div><br /></div><div>1. Lockdown is called</div><div><br /></div><div>2. Teacher / pre-selected student lifts your child out of them chair</div><div><br /></div><div>3. Teacher / pre-selected student carries your child to kitchen area / closest office / wherever kids are sheltering</div><div><br /></div><div>4. Your child waits quietly until lockdown is called off.</div><div><br /></div><div><b>Outdoors: </b></div><div><br /></div><div>If danger is apparent and your child is outside, they will:</div><div><br /></div><div>1. Go as fast as they can in their wheelchair away from danger.</div><div><br /></div><div>2. Find the closest safe place away from school grounds (determine this beforehand, discuss where they can go) and wait there. Remember that landmarks / recognizable symbols work best. (The McDonald’s sign, for example.) Ideally, pick something they can see from school.</div><div><br /></div><div>3. Call parents.</div><div><br /></div><div style="text-align: center;">***</div><div><br /></div><div><b>LOCKER:</b></div><div><br /></div><div>Opening their locker could be an issue. I recall being a new sixth grader and struggling with getting my locker open. (The first time using a combination locker.) This involves a couple CP-related aspects that your child may also struggle with. Fine motor (turning the dial), visual tracking (locating the right number) and sequential movement. I remember getting in trouble for taking too long opening my locker.</div><div><br /></div><div>If this is something your child wants to do, they should have the chance to do it, but recognize that this could be stressful.</div><div><br /></div><div><b>Accommodations:</b></div><div><br /></div><div>-If your child wants to work on and open their locker themselves, allow them extra time. (Find time for them to practice before school is in session.)</div><div><br /></div><div>- Keep only what’s absolutely necessary (for example, a jacket and cold lunch) in the locker. This will ultimately save time and streamline your child’s day.</div><div><br /></div><div>- If your child finds locker-opening stressful, have aide / para or a peer your child trusts open their locker.</div><div><br /></div><div>- Could they share a locker with a sibling also in their school? (Best locker experience I had was sharing one with Tara in high school. It worked because we trusted each other, and could help each other.)</div><div><br /></div><div>-Retrofit a locker with a lock that opens with a key (preferably house key-sized)?</div><div><br /></div><div><b>RESTROOM:</b></div><div><br /></div><div>Having access to the restroom is often overlooked. I went through the majority of middle school and high school <a href="https://toniasays.blogspot.com/2020/12/food-water-restroom-when-accessing.html"><b>rarely drinking anything and never using the restroom at school</b></a> because it took too long - and if I did chance it and try to go - there were nondisabled students in the accessible stall, using it to talk to friends. (This is not uncommon for students with CP to face.)</div><div><br /></div><div><b>Accommodations:</b></div><div><br /></div><div>- Make sure your child can access the restroom. Whether this means the outer door is propped ajar or whether it means they have an aide / para / peer to hold the door for them.</div><div><br /></div><div>- Are there staff bathroom(s) that are more accessible (single person) and / or closer to some of your child’s classes that they could use as needed?</div><div><br /></div><div>- Factor restroom trips into your child’s day. (After lunch, perhaps? Other times as needed.) Recognize that this will take extra time, but as a basic human need, it is entirely necessary for your child to be able to stay hydrated during the day and use the restroom, the same as any other student. </div><div><br /></div><div>-If students are only allotted a certain amount of bathroom passes per class per quarter/trimester/semester, ensure that this number is sufficient for your child’s needs. Adjust if needed.</div><div><br /></div><div><b>PASSING TIME:</b></div><div><br /></div><div>In middle school, we only had two minutes to go from class to class. For kids with CP, this is not feasible. your child will likely need more time to get from class to class, even with their wheelchair.</div><div><br /></div><div><b>Accommodations:</b></div><div><br /></div><div>- Allow your child two sets of textbooks. (One set to keep at home, and the other in each classroom.) This will minimize locker stops and allow them to maximize them passing time getting from place to place.</div><div><br /></div><div>- Give your child extra time.</div><div><br /></div><div>- When possible, have your child’s classes near each other. If there is a way to avoid them needing to travel repeatedly from one end of the school to the other, that would be ideal.</div><div><br /></div><div>- Recognize that it may take more time for your child to orient themselves in a new school and locate all of their classes due to <a href="https://toniasays.blogspot.com/2016/01/lets-talk-about-place-blindness-and-cp.html"><b>place blindness</b></a> - a common issue for those of us with CP. If possible, they could come in before sixth grade starts on a quiet day (outside of an open house type of event with tons of children) and start to familiarize themselves with the new space. Take pictures. Having a para / aide (if they do) can help in finding their way when school actually starts.</div><div><br /></div><div>***If your child has class in an outdoor / portable classroom, recognize that they will need to be able to safely access this even in cold weather. Factor in a stop for their jacket. Factor in snow that might hinder their entrance. Make sure they have help to navigate, especially in the event of cold / snow.</div><div><br /></div><div><b>GYM:</b></div><div><br /></div><div>Gym class presented various issues. Often, it was spent apart from peers. (Scorekeeping is okay once in a while, but when you are always the scorekeeper? It feels exclusionary.) Or I was expected to participate in ways that felt unsafe to me.</div><div><br /></div><div><b>Accommodations:</b></div><div><br /></div><div>- If the kids have to wear a gym uniform, allow your child to, perhaps, only change their shirt. (This is an accommodation I actually had and it worked well.) It will save them time, and it will not set them apart from peers as much as not expecting them to change at all.</div><div><br /></div><div>-If there is a swimming unit, let your child wear their suit to school under their clothes, so changing is as efficient as possible. (Bring undergarments to change into after swimming.) Allow your child to opt out of post-swimming shower (no safety bars, slippery, a safety hazard) and shower at home that afternoon / evening instead.</div><div><br /></div><div>- Allow your child to have options for adaptive equipment on gym days (or allow them to use the adaptive equipment that feels the most safe to them.) For this to be the most effective, have the gym teacher give your child a heads-up about what they will be doing next time, so they can ask questions and/or figure out what they’ll need. </div><div><br /></div><div>-Request a lesson plan at the beginning of the quarter/trimester/semester to get a better feel of what will be covered when - and to anticipate and work out possible issues in advance.</div><div><br /></div><div>- Ask your child what they feel they need in a given situation. Don’t assume because they can stand and walk, that they’ll feel confident without their chair in a rough and tumble middle school floor hockey game. Likewise, don’t assume because they use a wheelchair they cannot participate in a sport. Get used to thinking together and brainstorming solutions on the fly.</div><div><br /></div><div><b>CLASSWORK:</b></div><div><br /></div><div>Anything physical takes those of us with CP more time to complete. This includes writing. Chances are good that your child might need accommodations in the classroom as well. </div><div><br /></div><div><b>Possible Accommodations:</b></div><div><br /></div><div>- Shorter assignments</div><div><br /></div><div>- A copy of the teacher's notes</div><div><br /></div><div><b>Math/Science/Art:</b></div><div><br /></div><div>Know that many kids with CP struggle <a href="https://toniasays.blogspot.com/2017/08/parenting-kids-with-disabilities-what.html"><b>particularly in math</b></a>. (A lot of science has a heavy math component.) If your child is one of these kids, they may struggle in a similar way I did. I could learn material (though it took longer for it to make sense) to do a certain problem or set of problems. But I could not carry over information I had learned and apply it to a new set of problems.</div><div><br /></div><div>Subtracting, dividing, fractions, area, and any spatial concepts (so, art may be difficult as well) required a lot of extra time to understand. </div><div><b><br /></b></div><div><b>Possible Accommodations:</b></div><div><br /></div><div>- It may help to hear the material presented in a different / simplified manner. Sometimes hearing a peer explain a concept can make sense more quickly than hearing a teacher's explanation.</div><div><br /></div><div>- Extra time on tests.</div><div><br /></div><div>- Any opportunity to teach with manipulatives (like yarn, or blocks - anything tactile) has the potential to really help a math concept “click.” If possible, have hands-on learning opportunities connected to the math being taught.</div><div><br /></div><div><b>ORGANIZATION:</b></div><div><br /></div><div>Organization is difficult for those of us with CP to maintain because we are often in a hurry. If we are rushed, we cannot also make sure things are neat and tidy. Any opportunity for your child to have access to better organization will help them succeed.</div><div><br /></div><div><b>Accommodations:</b></div><div><br /></div><div>-Assignment notebook</div><div><br /></div><div>-Desktop organizer for table in each class / some sort of portable organizer to bring from class to class (Google “desktop organizer” for ideas)</div><div><br /></div><div>-Erasable pens / mechanical pencils (sharpening pencils = cumbersome at best)</div><div><br /></div><div>-Color-coded folders and notebooks (different for every class, clearly labeled) Yellow = Math, Green = Reading etc.</div><div><br /></div><div>-Fanny pack / small purse for personal items</div><div><br /></div><div><b>LUNCH:</b></div><div><br /></div><div>In sixth grade, I sat with the other kids with disabilities because our paras brought our lunch trays to the same table. None of the other kids sat with us. I hated not having a choice in where I sat.</div><div><br /></div><div><b>Accommodations:</b></div><div><br /></div><div>-Para / peer to help go through hot lunch line, bring tray wherever your child wants to sit</div><div><br /></div><div>-Lunch from home (which would allow your child to have access to their own food and decide where to sit.)</div><div><br /></div><div><b>FIELD TRIPS:</b></div><div><br /></div><div>-If possible, get a comprehensive list of these from teachers at the beginning of the quarter / trimester / semester. </div><div><br /></div><div>-If there are field trips that do not look feasible (for example, in sixth grade, I joined in on the ski trip and stayed in the lodge the entire time) you will know that ahead of time, and can make the decision to keep your child home on those days.</div><div><br /></div><div>-Also knowing about field trips in advance allows you to contact the venues ahead of time and inquire about accessibility as thoroughly as is needed. (Visit corresponding websites, so your child can begin to visualize the space ahead of time when possible.)</div><div><br /></div><div style="text-align: center;"><div>***</div><div><br /></div><div style="text-align: left;">Though these notes are specific to a child with CP, I hope they give an idea of some areas that may be overlooked. Realize that adults with your child's disability have insight on what your kids might need.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Your kids need allies in that room. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">And while I can't be in the room with your kids, I want to help them in any way I can. <b><a href="https://www.ellenstumbo.com/kids-iep/">IEP meetings were nothing short of traumatic for me</a></b>. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">But they don't have to be.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">I hope these notes offer some hope, and are the beginning of a new kind of experience for kids who have IEP meetings, knowing that their whole self is being looked after.</div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div><br /></div><div><i>Don't forget to connect on <b><a href="https://draft.blogger.com/blog/post/edit/4060372686205861977/2611864409909275077#">Facebook</a> / <a href="https://draft.blogger.com/blog/post/edit/4060372686205861977/2611864409909275077#">Twitter</a> / <a href="https://draft.blogger.com/blog/post/edit/4060372686205861977/2611864409909275077#">Instagram</a></b></i></div><div><i><br /></i></div><div><i><br /></i></div></div>Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.com0tag:blogger.com,1999:blog-4060372686205861977.post-77861307068723702162021-10-11T10:00:00.000-05:002021-10-11T10:00:00.203-05:00When I Failed for the First Time and Didn't Know It<div style="text-align: left;"><div style="text-align: center;"><b>1,009 words</b></div><div style="text-align: center;"><b>8 minute read</b></div><div style="text-align: center;"><b><br /></b></div><div style="text-align: center;"><b>TW: Emotional abuse of a child</b></div><div><br /></div><div>I'm in eighth grade.</div><div><br /></div><div>I'm trying to keep quiet about school. I can usually get Bs and the occasional A. (With the occasional C.) But today, in Oral Communications class, we all found out how we did on our speeches that rely on visual aids.</div><div><br /></div><div>I can't draw at all. Charts and graphs are confusing. Asking for help is asking to be mocked, so I don't even bother.</div><div><br /></div><div>Oral Communications is a class about giving speeches, not about how well we can draw. So I'd made the informed decision to give my speech without a visual aid.</div><div><br /></div><div>Everyone else has a letter grade written beside their score.</div><div><br /></div><div>Everyone but me.</div><div><br /></div><div>"Girls, how did you do on your speeches today?"</div><div><br /></div><div>Tara offers her grade reluctantly.</div><div><br /></div><div>"Tonia? What did you get?"</div><div><br /></div><div>"I don't know," I admit.</div><div><br /></div><div>And then I escape to my room as soon as possible.</div><div><br /></div><div style="text-align: center;">***</div><div style="text-align: center;"><br /></div><div style="text-align: left;">I may not be sure of my letter grade in this situation, but I <i>am</i> sure that I'm in <i>big</i> trouble. </div><div><br /></div><div>My escape hasn't done what I hoped.</div><div><br /></div><div>I've been followed.</div><div><br /></div><div>And the conversation is still going on.</div><div><br /></div><div>"You need to tell me what you got on your speech."</div><div><br /></div><div>"I already told you, I don't know..." I repeat.</div><div><br /></div><div>"Of course you <i>know! </i>Stop playing games and tell me right now!"</div><div><br /></div><div>"I don't know! I'm telling the truth."</div><div><br /></div><div>Patience is wearing thin, but I'm not acting clueless on purpose. I really have no idea what to say. </div><div><br /></div><div>"Show me your grading sheet. Let me see it!"</div><div><br /></div><div>I hold off. I stall as long as I can, but it's no use. Eventually, I give in and dig around my backpack for the paper.</div><div><br /></div><div>"Your grade is right here!"</div><div><br /></div><div>"No, it's not. I told you. There's no grade there. Just a number, so I don't know what I got." I protest.</div><div><br /></div><div>"<i>32 out of 50! It says 32 out of 50 right there! That's an F! That's your grade!</i>"</div><div><br /></div><div>Oh.</div><div><br /></div><div>Crap.</div><div><br /></div><div>It all goes downhill from here.</div><div><br /></div><div>My discomfort at the situation makes clear some "bad habits" I've developed -- an adult's words, not mine. My adult has honed in on these things and has told me - in no uncertain terms - that they are unacceptable. I need to change. ASAP.</div><div><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIs_Nm2hpbWedrwJn-w4A05ktDsqjFkc1yNNs3CCdpjy0eTU8SYDbvWCwUw6hucjsHqp6DuxJJgUpK6purwGj9UXT4927hQmMkZzhONwLuXKkQPlFCHI4TACsSJMa0VQ2lEeydMpfKNJM/s181/Screenshot+2021-03-22+7.29.13+PM.png" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="181" data-original-width="160" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIs_Nm2hpbWedrwJn-w4A05ktDsqjFkc1yNNs3CCdpjy0eTU8SYDbvWCwUw6hucjsHqp6DuxJJgUpK6purwGj9UXT4927hQmMkZzhONwLuXKkQPlFCHI4TACsSJMa0VQ2lEeydMpfKNJM/w283-h320/Screenshot+2021-03-22+7.29.13+PM.png" width="283" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">[Tonia, unsmiling, in eighth grade]<br /><br /></td></tr></tbody></table><div style="text-align: center;"><div style="text-align: left;">Case in point:</div><div style="text-align: left;"><br /></div><div style="text-align: left;">While I'm being criticized, I cope by smiling. Laughing. Putting my hands up suddenly to cover my face. I am told this "looks like you're about to barf! You need to stop doing that!"</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Also zeroed in on is my tendency to just...never make eye contact. Because looking someone in the eye when they're yelling at you is nerve-wracking. But it's something all adults in my world insist on. Something I am told I also must change, going forward.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">I'm eager to get out of this situation as soon as possible, so I say, a lot of "Okays" and "I knows" in hopes that I will be left alone.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">I'm not.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Instead, one of my school notebooks is located -- along with one of my pencils. I watch in disbelief and embarrassment as the words are written as a heading across the page:</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><u><i>Tonia's Change</i></u></div><div style="text-align: left;"><i><br /></i></div><div style="text-align: left;"><i>1. NO MORE BARF HANDS!!!!</i></div><div style="text-align: left;"><br /></div><div style="text-align: left;">(Beneath this, there are a few more sentences. About what is expected instead? About how unsightly my habit of covering my face is? My memory won't give up those details. But the formatting looked a lot like this.)</div><div style="text-align: left;"><br /></div><div style="text-align: left;">"Now, [the school guidance counselor] said you didn't look at her when she was talking to you. That's really disrespectful."</div><div style="text-align: left;"><br /></div><div style="text-align: left;">(This visit has merged itself into one single awfully humiliating memory, where the counselor told me sternly: <i>"Tonia, you need to LOOK at people when they're talking to you,"</i> with an obvious hand gesture.)</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Now, the humiliation is only growing.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">The writing continues:</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><i>2. LOOK PEOPLE IN THE EYE WHEN THEY TALK TO YOU</i></div><div style="text-align: left;"><br /></div><div style="text-align: left;">(Again, this was followed by a few more sentences, but I can't tell you their content. The first point and exactly how it was phrased is permanently stuck in my brain. The rest is rather fuzzy.)</div><div style="text-align: left;"><br /></div><div style="text-align: left;">3. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">(There was definitely a third point on this list. Or maybe it was just two things? Like I said...all these years later, I'm not clear on specifics. What I am clear on, is what happened next...)</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Scotch tape is found. The awful paper gets brought over by my bed.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">"Now, I'm going to hang this right here." The paper is secured the paper to the wall, right by the head of my bed - and in clear view for my little brothers, and any visiting family or friends to see. "...So that you can see it and remember what you need to do."</div><div style="text-align: left;"><br /></div><div style="text-align: left;">"No..." I whine. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">"Yes! You can't do these things when you grow up."</div><div style="text-align: left;"><br /></div><div style="text-align: left;">"I'm taking it down..." I say, rebellious for a moment. (I won't really be forced to be embarrassed me like this. I won't really be expected me to leave that up...will I?)</div><div style="text-align: left;"><br /></div><div style="text-align: left;">"You'd better not. I'm going to be back, and I'd better see that still up or you're going to be in even more trouble."</div><div style="text-align: left;"><br /></div><div style="text-align: left;">And up it stayed. For at least a year, until I moved bedrooms. I had to explain it to friends. To my younger cousin. It was beyond humiliating.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Knowing that at least one adult came in our room often, I eventually rebelled as much as I dared, moving the offensive paper from the wall to the side of my desk, which faced my pillow, but not much else.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">For a long time, I convinced myself that this was done out of care and concern. It was the only way I could live with the ongoing humiliation.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">These were hallmarks of abuse, trauma, and my then-unknown neurodivergence that someone didn't like seeing, so they humiliated me out of them. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">By ninth grade, I think, I forced myself to make eye contact, no matter how uncomfortable I felt.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">And there were no more barf hands.</div></div><div style="text-align: left;"><br /></div><div style="text-align: center;">***</div><div style="text-align: left;"><br /></div><div style="text-align: center;"><i>Don't forget to connect on <b><a href="https://www.facebook.com/toniasaysblog/">Facebook</a> / <a href="https://twitter.com/Tonia_Says">Twitter</a> / <a href="https://www.instagram.com/tonia_says/">Instagram</a></b></i></div></div>Tonia Sayshttp://www.blogger.com/profile/11406280143637741965noreply@blogger.com0