Friday, May 12, 2017

Update

I thought it was about time for an update.

I took an unexpected blogging hiatus but connecting with a new friend with CP has let me know just how needed all of our blogs and experiences are.

The blogging hiatus afforded me lots of time to write National Novel Writing Month novels (in both November and April), post my thoughts on season 4B's The Fosters episodes (with Tara) and discover scary new shows like Stranger Things - which I like, even though Startle Reflex means we have to watch all the monster parts on mute!

Tara and me, twinning hardcore.  December, 2016

It's been so great to be able to have connections to the disability community.  If it's our bestie, who we can count on to rant to about CP-related things, or our other bestie, whose middle child has CP and calls us "her role models," those connections are so important.

Because when you've got friends who drop everything to come and get you in an ice storm?  Friends whose daughter has the same Startle Reflex that you do, and she (and your sis) both startle in tandem, while watching Finding Dory?  Friends' whose youngest daughter, took one look at Greenie and said emphatically, "I like that!  I like it!"...?  It matters.

When you have friends who are as excited about a novel you are writing that they read along?  And comment to every chapter?  And when you least expect it, they gift you with the most amazing companion journal complete with excerpts and corresponding pictures (even homemade silhouettes of a character who is not pictured anywhere...and they even make sure that that character's CP is visible in her stance...)  It matters.

As Meredith Grey would say, "You find your people...and you stay with them."

Wednesday, March 29, 2017

Tuesday, January 3, 2017

Great Disability Blog Posts of 2016 (Part 7)

Part 1 / Part 2 / Part 3 / Part 4 / Part 5 / Part 6

Today, we have the final four posts of what I consider to be the greatest disability blog posts of 2016. This time we have two by Ellen, one more by Mary Evelyn, and one more by Vilissa:

When a Stranger Thought I Was Disabled by Ellen at Ellen Stumbo

But while I sat on my daughter’s chair waiting in the hallway, a woman, who is not a regular staff member, turned to me and said, “Well aren’t you a pretty lady!”

I want you to get the scenario. Imagine a grownup talking to a little girl. Let’s say the little girl is two or three years old. Do you hear the tone of voice? Do you see the special smile? “Well aren’t you a pretty lady!” - Ellen Stumbo

The truth is, no matter how hard I try to convey what ableism feels like to me, there really is no adequate way for able-bodied people to truly understand.  This post is about as close as they can come.  I still remember the day I got a slew of indignant text messages from my friend, who had just experienced ableism...as an able-bodied woman.  I was, probably, less sympathetic than I could have been.  Instead, I was giddy, telling Ellen: "Yes!  That's what it feels like!"

If you've ever wondered at the damage ableism can do, but can't quite relate to disabled people when we share our stories, try reading this post (then read some of ours.)  Ellen does a great job conveying what ableism feels like.

[Image is: a close-up of a wheel on what could be a child's wheelchair.  The wheel is decorated with a design.  For more on wheelchairs, read the next post below, also by Ellen.]


When I Asked My Daughter, “What Do You Think I Feel About Your Disability?” by Ellen at Ellen Stumbo

“What do you think I feel about your wheelchair?”

“Hmmm,” she took a little while, “I don’t think you like it.”

“And why do you think that?”

“Well, I know you want me to walk.” She said. - Ellen Stumbo

An important, and frankly, really brave conversation between a mother and daughter.  Ellen took one of the very first conversations I had with her and used it as a jumping off point to talk with her daughter about her perception of Ellen's perception of her disability, and then, Ellen's actual perception of her daughter's disability. Such an important post.  Such an important conversation.

WHEN WE RECEIVE COMFORT FROM OUR CHILDREN by Mary Evelyn at What Do You Do Dear?

That’s when I heard my 4-year-old son’s voice, timid and confused. “What’s wrong, Mommy?”

I couldn’t even catch my breath enough to answer as my husband stepped in. “She’s alright, Simeon. Mommy’s just feeling sad for her friend right now.”

I thought the kid would be upset or maybe he’d go back to eating his breakfast, satisfied with the explanation. Instead he looked at me with concern and said softly, “I give you hug, Mommy?” Then, pointing to his shoulder, “You put your head right here?” - Mary Evelyn

I love this post because it shows that we, with disabilities can help others.  We can help our families.  We can comfort them.  Love them.  Be there for them.  It shows that parenting - and more than that - parenting a kid with a disability - is a two-way street.  Another post by Mary Evelyn grounded in respect and love.

White Privilege & Inspiration Porn by Vilissa at Ramp Your Voice!

I ardently despise inspiration porn, but as an advocate who focuses on the achievements and experiences of disabled Black girls and women (and other disabled girls and women of color), I do not have the “luxury” of picking and choosing stories that depict us in a positive, non-inspirational light.  Why is that?  Because our stories do not get the same or fair amount of spotlight and recognition as the ones that feature White disabled people. - Vilissa

An eye-opening post about how white privilege factors into inspiration porn.  Vilissa does a stellar job explaining this all the while sharing a story about a Black disabled little girl, who won a penmanship award earlier in 2016.

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Which of these posts resonated the most with you, and why?  Now that you have read all the Great Disability Blog Posts of 2016, do you have an overall favorite or favorites?  Did this list give you any new blogs to read in 2017?  Sound off in the comments and let me know.


Monday, January 2, 2017

Great Disability Blog Posts of 2016 (Part 6)

Part 1 / Part 2 / Part 3 / Part 4 / Part 5

Today, we have a post from Jess, two from K, one from Vilissa and one from Kathleen.  I have loved sharing these with you guys and I hope you're gaining some insight from these great blog posts.  I know I have.  Tune in tomorrow for the final part of Great Disability Blog Posts of 2016:

the courage to listen by Jess at A Diary of a Mom

When a member of the community being hurt by what was intended as kindness says, “This hurts us,” shouting, “But it’s meant to be kind!” is not particularly helpful. - Jess

A great blog post by Jess about a conversation that is frequently had in advocacy circles.  To me, it reads as how ableism frequently masquerades as "niceness" and that when a group of people (disabled people) speak out and say "This is hurtful" people often say, "But we're trying to be nice!"  Very often, we, the oppressed group, go away from these kinds of conversations feeling like other people's feelings matter more than our safety, than our dignity, even, at times, than our lives.  Read this please.

[Image is: a curb with autumn leaves beside it.  What does a curb have to do with these posts.  Read K's below to find out.]


THE FIELD TRIP FIASCO: When everything ISN'T fine, but one person makes all the difference by K at Transcending CP

That night, I went back to my dorm room and sobbed into my pillow. I had held it together all day and I just couldn't anymore. It was yet another reality check that I am living in a world that wasn't built for people like me, a world where simple, everyday structures like stairs and cement curbs make my heart race and simple assurances like "it will be fine" from a physical therapist simply aren't enough. - K

One of my most favorite posts this year was written by K, doing what (I think) she does best: bringing her blog audience into our world.  This time, K shares about a field trip she went on, where she advocated for herself in advance about possible difficulties and was reassured by her professor (also a physical therapist) that it would be fine.  Needless to say, it was not.  K does such a fabulous job detailing the intricacies of instances like this, when one person's idea of accessibility and accommodations simply does not fit what we need.  This post is so much more than that, though, because it details just how you can be there as an ally, a friend or a family member, if you see us struggling.

The Nightmare Before Christmas: ESCALATORS and My Terrifying Weekend Experience by K at Transcending CP

I put my left foot first.

My right foot didn't follow.

My legs were tangled, going in two different directions as the escalator proceeded down, ready or not.

"HELP," was all I could manage to say. - K

I have never ridden an escalator and this recent post by K makes me so glad!  Another example of how seemingly innocuous things are not in the least when you have CP (and how quick thinking really can save the day!)

There Is No Such Thing As Transcending Disability by Vilissa at Ramp Your Voice!

I can never transcend disability because there is nothing to transcend from.  

To “transcend” means to “be or go beyond the range or limits of (something abstract).”

I cannot transcend disability; instead I can transcend from the ableism, discrimination, and stereotypes that are associated with being disabled.  - Vilissa

As someone who also embraces identity first language, but didn't always, I really appreciate this post by Vilissa.  I wanted to include it because I think it's important to show that not all people with disabilities are the same.  I feel this post in my soul.

Thoughts on the Sagamihara Massacre and Ableism by Kathleen at The Squeaky Wheelchair

Being disabled takes courage. But it’s not the kind of courage with which the world is comfortable. It doesn’t come neatly packaged with “heartwarming” YouTube videos or “touching headlines.” It is quiet, but fierce. It grows and grows inside of you until one day, you join the rebellion that is loving yourself in places and spaces that don’t always love you back. - Kathleen

2016 was also the year of the worst hate crime (that I can recall) perpetrated upon disabled people.  I have not been able to write about this myself, but Kathleen's words echo those I would write if I could.  If you did not know about this terrible act of violent ableism, read this post.  We must make the world a better place than one where people who are different are targets like this.  Being informed is a great start.  Reading Kathleen's post is a great way to do that.

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Did you read these posts?  Which was your favorite?  Did you learn anything you didn't know before?  Let me know in the comments.  And/or be sure to let Jess, K, Vilissa and Kathleen to let them know your thoughts on what they wrote.


Sunday, January 1, 2017

Great Disability Blog Posts of 2016 (Part 5)

Part 1 / Part 2 / Part 3 / Part 4

Happy 2017!  Even though it's the new year, you're in luck!  I have even more blog posts to share from 2016!  Today we have two posts by Fox, another by Ellen, one by Rhema and another by Vilissa:

Performing Letter Talker by Fox at Fox Talks With Letters

I MADE A VIDEO WITH RUBY INTERVIEWING ME. I FELT NERVOUS ABOUT BEING IN A VIDEO AND THOUGHT I WOULDN'T BE ABLE TO DO IT. A TALKING, SINGING OR PERFORMING REALLY ALL I'VE SEEN ON VIDEO. I LETTER TALK SO I THOUGHT PEOPLE MIGHT THINK IT'S WEIRD. I'M GLAD I CONQUERED MY FEAR. - Fox

(Not weird at all, Fox.  I loved seeing your interview and thought you did a great job!  I think other people will love it, too!)

[Image is: a chalkboard that reads learning with a line below it and below the line, is the word schooling.  In today's great posts, two are about how important learning is to autistic kids, in particular.]


Please Don't Praise Me for Loving My Child With a Disability by Ellen at Ellen Stumbo

If I saw a friend with her typical child and I pointed at her kid and said, “I could never do it.” I think we would all agree it would be rude. That statement would say a lot about what I thought about her child, most likely not positive because I just said I could never do it. “What do you mean?” She’d probably ask offended. “I mean, it must be so hard to parent YOUR child!” Maybe right then she would have day dreams of punching me in the face. But I would not be surprised if she picked up her kid and walked away from me, offended, and reassuring her child he is loved, and wonderful, and she is lucky to be his mom. - Ellen

Ellen does a great job explaining why it's harmful for kids with disabilities to hear comments like, "I could never do what you do," made about them to their parents.  Seriously, go and read this.

Real Thoughts About School by Fox at Fox Talks With Letters

FEEL SCHOOL WAS A TRAUMATIC EXPERIENCE. - Fox

Fox shares some super important insight about how being taught below grade level and by teachers who did not understand autism remains traumatic for him to look back on, even though he is now homeschooled.  Very important post to read and consider.  I related to it a lot, because I also had a year in school where I was surrounded by ableism.

Speech to teachers by Rhema at Rhemashope

My strong desire is to have a challenging education. I want to be a scientist. Not something I would have thought so much possible years ago but now I think it is possible. Strong minds should have strong educations. Not strong minds should have strong educations too. Good education is a goal for me. - Rhema

This year was a big one for Rhema, as she gave a speech to teachers, about the importance of having a challenging education.  Like Fox, Rhema also spent time being taught below grade level, which was frustrating and angering for her.  Please read and listen to these kids.  It's so important for us to not assume a student cannot learn because they cannot prove they know something.

The Black Body, Assisted Suicide, & the “Me Before You” Connection by Vilissa at Ramp Your Voice!

Death and the Black body are intimately connected, so much so that death by one’s own hands that are not systemic based is tremendously taboo.  We see that “tabooness” in the ideals we ardently hold unfold in the aforementioned research data about assisted suicide that are prevalent in our community:  the right to die by any other means that is not tied to racism, systemic oppression, or saving another is frowned upon, and those who are pondering their right to die will most likely meet resistance from members in our community.  - Vilissa

One of the most eye opening pieces I have read this year.  Vilissa shares why a story like Me Before You likely would not exist with Black characters.

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Did you read these posts?  Did you learn anything new?  Let me know in the comments - or better yet, let Fox, Ellen, Rhema and/or Vilissa know that you read their posts.


Saturday, December 31, 2016

Great Disability Blog Posts of 2016 (Part 4)

Part 1 / Part 2 / Part 3

Today's round of posts is pretty special more than half the posts are written by kids.  Rhema, Ellie (first time on this list for her!) and Fox.  We also have another great post by K, and a first post by my friend and fellow blogger, Ellen!

Love, Rhema by Rhema at Rhemashope

Talk to us like normal so we feel important
We may not respond with our timely voices
but still know that we hear you and think you are lovely to speak to us
So much of talking happens inside with autistic people
so we dont try to engage like others
but we want to so much
So try to remember this too
Strong to make others stomach the uncomfortable
but we are thankful when you do your best - Rhema

Rhema's mom, Jeneil, shares some favorite quotes spelled out by her daughter, Rhema, this year.  So much insight from this bright girl on a variety of subjects.

[Image is: a blonde woman smiling and doing push ups across from a brown haired girl with her chin on the ground.  If these two aren't inspirational for exercising why restrict a disabled child to being just an inspiration when they are fully human.  Read Ellen's post below for more on this.]


My Child Is a Person, Not Just an Inspiration by Ellen at Ellen Stumbo

My child is a person and her purpose is not to be a message to the world about acceptance, to be a teacher about what matters in life, or an inspiration for doing the same things other people do that are sometimes perceived as incredible accomplishments. Yes, she might do those things from time to time, but that is not her purpose.


When I limit another person to be only a message, or a lesson, or an inspiration, I take away their relatability, their humanity, and suddenly they are not a person like you and me. - Ellen

Ellen shares an important message via this blog post about how damaging it is for kids with disabilities to be viewed through a singular lens, instead of being viewed as whole people.

My Sister Has Down Syndrome and It's Okay With Me by Ellie at Ellen Stumbo

If Nichole was not my sister, I would probably stare at her and wish she was. - Ellie

Ellen's oldest daughter, Ellie, writes a beautifully respectful post about her youngest sister, Nichole.  Just ten years old at the time of this writing, Ellie makes it clear that it is completely possible to write about people with disabilities as multi-dimensional, without falling into pity or a limiting perspective.  One of the highlights of my year to read, for sure,

MY RIGHT FOOT by K at Transcending CP

I didn't tell her this: that there are some stains that never come out in the wash. Some stains are permanent. I never forgot her pointing, her laughing. It's amazing, sometimes, how much words can hurt. How a single sentence can leave us feeling so alone. - K

K shares about such a common occurrence for those of us with CP: an insecurity with showing the part of us most affected by CP.  I've almost never worn shorts as an adult.  Capri pants either.  Only full length pants.  I rarely go barefoot.  Needless to say, I related so much to this post.  And if you feel alone in being insecure about a part of your body, read this.  You won't regret it.

Nicely Autistic by Fox at Fox Talks With Letters

 I AM BEING ABLE TO DECIDE MY OWN LIFE. HAPPY I CAN TALK. - Fox

Fox spells a fantastic poem about his new ability to make choices and how that is helping him to accept himself.  Like Fox, I write poetry to cope, and so I can relate to him a lot in this way.  He has a great way with words.

***

Did you read these posts?  Did you learn anything you didn't know before?  If so, what?  If you liked the blog posts, be sure to follow the links to let Rhema, Ellen, Ellie, K and/or Fox know you enjoyed their work.


Top 5 Posts of 2016

It's the end of another year and time to see what you guys thought were the most helpful, or interesting, or just plain popular posts of 2016.  It's always interesting to see which posts wind up being more widely read and which are not.  Hang out for a bit and see if your favorite made the list:

[Image is: Clocks counting down the hours until 2017]


5.  High School Gym Class With a Side of Ableism

Sometimes, I share stories that are just that, stories.  Memories I have of significant experiences in my life with CP.  Back in April, I shared about one such experience in high school gym class, when we tackled the ominous but brief rock climbing unit.

Cerebral Palsy means that anything that anything physical involves a good deal of both pre planning and motor planning.  Having never climbed a wall before, I had no previous experience to serve as a map for just how to make my way up.

4.  Let's Talk About Speechless 1x01 "P-I-PILOT"

I really enjoyed recapping the first episode of Speechless.  I connected with JJ's character and really loved several of the scenes, which closely mirrored my own life.  One, in particular, where JJ's classmates give him a standing ovation for entering the room.

(Think this is over the top?  I once had a teacher who said, "Make way for the princess!" whenever I entered her class.)  JJ's teacher instantly freaks out when he realizes that (oh my gosh!) JJ can't stand up!  "THE STANDING OVATION IS INSENSITIVE!" he screams and all the kids sit down.  (Do I have an example for this?  You bet.  High school Humanities, our zany teacher has all of us stand up to pretend to be archaic statues.  Her eyes fall on me, still in my desk, and she says with a look of discomfort and mild alarm says, "Tonia, you don't have to.") 

3. Dear Parents Whose Baby Has Just Been Diagnosed With CP

Last year, I wrote a Letter to My Younger Self, and this year, I really wanted to write one to parents whose baby has just been diagnosed with CP.  I read a lot of parent blogs, and a baby or child's diagnosis seems like it is universally difficult for parents.  I wanted to assure parents that we are okay:

CP does not make your baby one-dimensional, or a monster.  CP is not a punishment because you did something or didn't do something.  Sometimes, things just happen.  Your baby is still your baby, and your baby needs you.  They need your love and your acceptance.  So, hold them.  Read to them.  Talk to them.  Bond with them.  Your baby will feel secure with you, and you will feel even closer to you baby.

2.  Let's Talk About the Effects of Consistent Patronization

Something I thought a lot about this year was how being consistently patronized by important adults in my life has shaped me as an adult.  Like with most realizations that feel "big", I had a hunch that others might know this feeling that I struggled to even describe with words:

...The lines between a genuine compliment on my actual ability and one that gushed because I did common things had grown blurry.  So when a teacher praised my work legitimately, I panicked, because I didn't want something I had put my heart into to be read as the token inspirational piece in the [middle school newspaper].

1.  Let's Talk About the Gap Between Disabled Adults and Parents of Kids with Disabilities

Tonia Says serves a dual purpose: first and foremost to let others with CP know they are not alone.  Also, though, it exists to attempt to bridge a massive gap that exists between disabled adults and the parents of kids with disabilities.  As we are coming from opposite experiences, it's often difficult to see each others points of view.  For a long time, I wondered why the gap existed, and this quote, by my friend (and fellow blogger) Ellen Stumbo, really explains things brilliantly:

"You guys are the first generation raised out of institutions.  Before that, parents always spoke for you.  We had to.  There was no other choice.  Now, though, you've grown up, and you speak for yourselves.  You're the first to ever do that.  I don't think we, as parents, are used to it yet."