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.

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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."

Friday, December 30, 2016

Great Disability Blog Posts of 2016 (Part 3)

It's time for the third round of Great Disability Blog posts.  If you missed the first two, part one is here and part two is here.  Today we have more posts by K, Vilissa and Mary Evelyn:

I Spoke. People Listened. by K at Transcending CP

This is such a triumphant, lovely post written by K, about the first time she spoke publicly about CP.  This was a huge milestone and I loved reading about how blogging helped her find her voice.

[Image is: a microphone, because I like to think that by doing a post like this, our voices, and voices of people who respect and support us will be amplified.]


If I Die in Police Custody… by Vilissa at Ramp Your Voice!

Vilissa leaves a stunning, sobering and deeply personal set of final instructions in the event that she were ever killed by law enforcement.  A horrifying possibility, and even moreso, for her, and all those who must think about these possibilities, because they are, in fact, their realities.

IF YOU GIVE A MOUSE AN ACCESSIBLE PLAYGROUND. by Mary Evelyn at What Do You Do Dear?

Mary Evelyn shares what a difference an accessible playground makes for her son.  She vividly shares how playing at an inaccessible playground does not feel much like playing at all.  But how playing somewhere where it was accessible made all the difference in the world.  As usual, a funny, respectful take on this issue.

Letter to Pope Francis: My Disability Is Not for You to Objectify by Vilissa at Ramp Your Voice!

A strong and respectful letter to the Pope about his comments in April about how "people with disabilities are gifts to their families."  Vilissa shares, unapologetically that her family should love her regardless of how God made her and that she is the disabled one, not them.  I absolutely adore her candor.

Little Known Black History Fact: Elizabeth Suggs, Early 20th Century Author with Brittle Bones Disorder by Vilissa at Ramp Your Voice!

Part of being disabled means much of our history is happening right now.  Our civil rights movement is in its toddlerhood.  Because disabled people historically were institutionalized, it is so rare to find information about a disabled woman from the early 20th century, especially a Black disabled woman.  I loved so much learning all about Elizabeth Suggs courtesy of Vilissa's blog post.  It makes me feel like we do have a history after all.


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Did you read these posts?  Which ones resonated with you most and why?  Let me know in the comments - or better yet - let K, Vilissa and Mary Evelyn know, by leaving them a comment.

Thursday, December 29, 2016

Great Disability Blog Posts of 2016 (Part 2)

Great Disability Blog Posts of 2016: Part 1

Time for Part 2 of Great Disability Blog Posts.  I really enjoyed sharing yesterday's - if you missed it, click the link above.  Today, we have more from Fox and Vilissa plus a powerful post by mother and daughter, Jeneil and Rhema, an important post by Kathleen, and one by Mary Evelyn that I come back to time and time again:

Feelings Hard To Control by Fox at Fox Talks With Letters

Fox shares about feeling sad and afraid about racism after the 2016 presidential election in the US.  He's not the first child to feel this way.  Fox does a great job explaining the difference between the kind of fear he likes (SCARY HALLOWEEN AND SCARY ROLLERCOASTERS) and his fear of racism which, he spells, FEELS DIFFERENT and TOO HARD TO UNDERSTAND.

[Image is: a mother and daughter both in white tops and black skirts, in honor of fabulous mother and daughter blogging team, Jeneil and Rhema.  Read their post below.]


Hard Conversation by Jeneil and Rhema at Rhemashope

I UNDERSTAND THAT I AM LOVED BY YOU BUT SOMETIMES I FEEL SO MAD AT YOU BECAUSE YOU BELITTLE ME - Rhema

A powerful conversation between mother and daughter that I have thought of many times, since I read this post in August.  If you would like to learn about presuming competence.  About how ableism hurts.  About how to apologize for it and go forward with your child and make different choices than the ones that hurt her, read this post.  It's so, so important.

How “Lemonade” Empowered Me As A Black Disabled Woman by Vilissa at Ramp Your Voice!

I was shocked to see model Winnie Harlow make a cameo appearance in “Lemonade” as one of the many young women featured in the “Hope” chapter.  Winnie has Vitiligo, and her scenes were close ups of her face, which displayed her beauty and innate strength.  Black disabled women are rarely featured in musical performances, and to see one of us look so elegant and portrayed in an empowering regard made my heart swell with pride.  Winnie represented a form of Blackness that is ignored in our community – the Black disabled body.  Seeing Winnie’s appearance made me believe that I too have the “freedom” BeyoncĂ© sung about, and to know that my version of Blackness and Black womanhood mattered immensely. - Vilissa

I Can't, In Fact, "Do Anything I Set My Mind To" (And That's OK) by Kathleen at The Squeaky Wheelchair

The word “can’t” is important. The word “can’t” has power. The word “can’t” belongs to you. As a disabled person, this realization has not left me defeated, but instead, free to focus on that which I can do. Free to shape my life and my goals according to my needs. Free to accept that it is not necessary to be able “to do anything” so long as I am proud of the “something” I can do. Rejecting the notion that “I can do anything” has not irreparably damaged my self –esteem or trapped me in a pit of self-loathing. It has given me the tools to lead a happier life. - Kathleen

I DON’T KNOW HOW TO TALK ABOUT HEALING. by Mary Evelyn at What Do You Do Dear?

A powerfully resonant and respectful take on what it's like to be the mom of a disabled child in church on Sunday when the subject of healing comes up.  Mary Evelyn's post, in a way, inspired me to explore my own journey of faith as a disabled woman (which you can find in my series, Let's Talk About Faith.)  Mary Evelyn opened up such a necessary conversation with this post, and I know I'm super grateful for it, and for her.

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Which one of these posts resonated with you the most, and why?  Share in the comments!  (And don't forget to comment to Fox, Jeneil and Rhema, Vilissa, Kathleen and Mary Evelyn if you liked their posts, too!)


Wednesday, December 28, 2016

Great Disability Blog Posts of 2016 (Part 1)

There have been a lot of amazing posts on disability this year.  And because there are just so many, I want to share them with you a bit at a time.  It's my hope that you'll find new blogs to follow, and new perspectives to consider:

A Grocery Store Trip by Fox at Fox Talks With Letters

Fox shares about a trip to the grocery store where a man made a rude comment to him about his accommodations.  Fox so vividly describes his need for this particular accommodation and why the man's comment so hurt him.  His mom told him what mine often told me: a variation of "don't let him get to you," as this is "not a regular thing." As Fox puts it: BUT STARES ARE REGULAR.  Long after you have forgotten the comment made in the grocery store, the little boy you made it about is still thinking about it.  For a brilliant firsthand account of a child experiencing ableism, please read this.

[Image is: the HARD TERRIBLE GROCERY STORE, as Fox describes it in his post.]


a question by Jess at A Diary of a Mom

Jess makes a compelling point about privacy for autistic kids on the internet.  Curious about what I mean?  Check out the post.  You won't regret it.


K does an outstanding job in this post at explaining just how difficult it is to be spontaneous with CP (and how difficult it is to multitask!)  If you've got CP, or if a loved one does, check this out.  You'll either come away knowing you're not alone, or with a greater understanding of why a walk in the park ISN'T a walk in the park when you have CP.

Being a Black Disabled Woman Is An Act of Defiance: Remembering #KorrynGaines by Vilissa at Ramp Your Voice!

Vilissa is, as always, a strong voice for the Black Disabled community.  She boldly shares about how being a Black disabled woman is an act of defiance and what that means, exactly.  Her voice is much needed.  If you have not read her blog yet, check it out.

#DisabilityTooWhite: Making the “Good Trouble” in Advocacy by Vilissa at Ramp Your Voice!

The hashtag itself is very in-your-face, and that is how I want it to be remembered – there is no question what it is about, and the discussion that is to follow.  I, like so many, are tired of the “tip-toeing” around sensitive matters in our communities and advocacy to protect or coddle the feelings of those who will be most resistant in trying to effect change that will empower us all. - Vilissa

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Which one of these posts resonated with you the most, and why?  Share in the comments!  (And don't forget to comment to Fox, Jess, K and Vilissa if you liked their posts, too!)

Wednesday, December 7, 2016

Video: How and When to Talk to Your Kids About Their Disability


If you are a parent of a child with a disability and are wondering how and when to talk about it with your child, check out this episode of The Unexceptional Moms podcast.  My sister, Tara, and I joined hosts Ellen Stumbo and Erin Lorraine to answer this great question.

If you have a disability, how and when were you told about it?  Is disability discussed in your family?  If you are a parent, what have you told your child or children about theirs?  Will you do anything differently now that you have seen the podcast?

Monday, December 5, 2016

10 Things About The Holidays and Me (and CP)

1.  I love making out Christmas cards in early December, with holiday music playing (haven't gotten there yet this year...oops!)

2.  Snow is so pretty...but my CP does not love it.  It makes a lot of things harder.  Like walking, keeping my balance and flexibility.

3.  I love candy canes.

4.  Family time is the best.

5. Christmas movie I must watch every year?  A Christmas Story.

6.  Favorite random gift?  Christmas cookies!

7.  We have two Christmas trees, and only one ornament: Big Bird.  He is the star of any tree.

8.  My favorite Christmas song is O Holy Night.

9.  My favorite person to sing Christmas songs with?  Definitely my cousin.  If you are close to me, you know which one I mean, and you know why... :)

10.  My favorite decorations are:

[Image is: Santa on the far left, dressed all cozily for winter, Christmas Cheer in the middle (a glass jar of red, green and gold jingle bells decorated with a white ribbon.  Far right is a close up of the tag on the Christmas Cheer: At a time when we should feel the most blessed The holidays can make us feel quite stressed.  When you feel the "crabbies" coming near, Sprinkle yourself with Christmas Cheer!!! (Sprinkle on others as needed)]
What are your favorite (or least favorite) things about the holidays?