Monday, September 4, 2017

Parenting Kids with Disabilities: Community

Previously on Parenting Kids with Disabilities:  Introduction / Accepting Your Child's Diagnosis / Helping Your Kids Accept Their Diagnosis / Accepting a Subsequent Diagnosis / Presuming Competence / Surgery / Adaptive Equipment / Public Interaction / Adapting / What You Can't See (Invisible Aspects of CP) / What Ableism Looks Like / Identity / Inclusion vs. Accommodation

Dear Parents,

“I know JUST how that lady talked to you because that has happened to me a lot in my life.”

“Mine is the same way.”

“It's so nice to know that you feel similarly, because I felt so conflicted about being frustrated by it.

There was a time when I never heard these words of solidarity, when I never felt the connection that comes with giving and receiving understanding in such a way that only happens when you speak to someone about an experience who has endured the same.  Community is powerful.

[Image is white text on a blue background that reads: I will always be there for you Tonia and Tara.  Underneath are three flowers.  Sweet, supportive words from someone in our community.]

Your child has community in school and they have family at home, and both are vital.  But there is also a need for kids to connect with other people with the same disabilities they have.


Growing up, my connection to the disabled community was limited to the other disabled child in my preschool.  Or the classroom that was a catch-all for a child with any type of disability when I was seven and went to summer school.  I had so much internalized ableism then, that I used to come home and tell my sister how “cute” the older boy in the wheelchair was, not because I had a crush, but because he was more severely impacted by a disability and could not speak verbally.  It’s the same reason I wanted to always be around the Deaf boy, though we could not communicate.

In middle school, I was again grouped with the only other girl who was disabled in my grade.  We sort of became friends, based on proximity, but did not have much in common.  Once, she swore at me, and called me a vile name in art class and the teacher asked her if she was okay, ignoring me altogether.

Suffice it to say, growing up, forging a sense of community was difficult.  My disability was never framed as anything more than something I needed to improve upon.  Adults in my world concurrently treated children like me with too little understanding and too much pity.

If you want the unvarnished truth, I grew up thinking I was supposed to be nondisabled.  This is not to say that I was out of touch with my reality as a child with a disability.  That fact was never lost on me.  But I had a constant sense of, “I’m just like them, I just use a walker.”  “I’m just like them, I just use crutches.”

My goal was always to be “just like them.”  The problem came when I constantly realized that I would fall short.  That I would never be just like them.  That actually, no matter how hard I practiced, how much I stretched, how strong my legs became, I would never walk independently.


It was in sixth grade when my mom raised a concern at my first middle school IEP meeting that I was not accepting my disability.  She was right.  I wasn’t.  And I’m glad she was paying attention.

The following summer was my first at Camp Courage.  I was thirteen, and it was the first time I’d ever been around so many other kids with disabilities.  For the first time, I didn’t feel like I stuck out.  I had a wheelchair, yes, but so did almost everyone else.  The nondisabled were happy to help.  I never felt like a burden or like I brought them sadness or pain because of what I could not do.  The name of the game was adapting.

So, we all got to do arts and crafts and make homemade pizza and eat dinner for breakfast, but we also all got to swim and horseback ride and try activities we didn’t get to do at home.  We got to have shaving cream fights and go to dances.

I made a best friend, and we came back to camp for two more summers.  My last summer there, there were four of us.  Four best friends, all happy to be there, loving the fact that for this one week every year, everybody was “the kid in the wheelchair,” so no one stuck out.

I had a long way to go.  I still looked upon my cabin-mates with pity, believing that I, (the least physically impacted by disability in our friend group) was “lucky” and would often respond when a friend needed a hand, because “I could do more than they could.”  I was exposed to many different types of disabilities and I learned not to stare at other kids who looked different.  I didn’t ask them about their disability because there, no one wanted to talk about that stuff, we all just wanted to have a good time.

It was the beginning, though, of self-acceptance for me.  It was extremely important that in those difficult teenage years I had a place where I could just be myself and I didn’t have to be the one disabled kid in the sea of nondisabled kids, constantly reminded of what I was missing.

I finally started to realize it was okay to be just who I was.


After camp, throughout high school, college and even beyond that, I surrounded myself with nondisabled friends.  Even when I moved into accessible housing ten years ago, I didn’t forge friendships with many of the others who live here.  It was not an automatic community by any sense of the word.

Because of this, again, my eye was often drawn to all the ways I was unlike my peers.  They could be spontaneous.  They could go in the haunted house at the State Fair.  They could walk and run.

They just could, while I could not.

Over the past couple of years, though, since I started blogging, I have slowly started forming my own little community.  As of now I have four people I know I can reach out to anytime, about anything.  Three of them have CP, and the fourth uses a wheelchair full-time.

The thing is, all of these people are younger than me.  I have never had a mentor with my same disability.  Definitely not when I was a child, and not now.  However, I believe we create what we need in life, and over time I have been able to create community.  While I know not all of them look to me in the sense that I am a mentor (and that’s fine) I try to instill in the 20-somethings not to let the sense of community stop with them.  I encourage them to be there too, for younger kids with CP.  When they say, “I wish they had you to talk to like I do,” I say, “They don’t have me.  They have you.  They’re lucky to have you.”

Passing on this sense of belonging, of being a part of something will help the community and the bond among us grow even stronger.  For those with CP, I point out the physical characteristics that make us like each other, that mean we are a part of this very particular community, with specific facial features and movements and that it’s not a bad thing, because it means that we belong somewhere.

Perhaps, the most rewarding is being there for a child who also has CP.  She calls my sister and me her “role models” and wants to be like us when she grows up.  It’s flattering.  And it’s beyond amazing to see someone so much like me, growing up before my eyes.

To think that once upon a time, I thought that I was the only one.


  1. Isn't Camp Courage the name of the camp in the book "Accidents of Nature" by Harriet McBride(I think that's the authors first name) ? If so I didn't realize the camp was a real place.
    My relationship with my mentor with CP shaped me as an adult with CP and is very precious to me. My mentors inspire my creativity and helped me to be there for others with disabilities.

    1. You know, I have no idea! I've never read "Accidents of Nature" though I've heard of it! Now I really want to check it out.

      Yes! So glad you've had the experience of having mentors <3

    2. Yes you really should read that book. The main character Jean has CP and is a wheelchair user and she meets another wheelchair user named Sara at a camp for disabled kids, (I own the book so I checked on the synopsis and the camp is actually called "Camp Courage"!) who teaches her about ableism and they make fun of Jerry Lewis type telethons at a camp event. That book TOTALLY reminds me of you and your blog posts! If you read it PLEASE review it! I would love to read your thoughts on it. I personally loved it and saw no representation issues with it at all aside from one or two outdated medical terms and disabled self identifying terms, but that was only because it was written BEFORE the medical terms and identifying terms were updated. For me personally it was a bit too pro "social model" of disability since the Sara character is of that thought process but I still loved it. The author whose name is actually spelled Harriet McBryde Johnston is disabled and according to her bio based the camp on a real camp and her friends. :) So it might actually be based on your camp!

      Me too!

  2. I tried to reply with another comment a moment ago but its not showing up so I apologize if you get 2 replies.

    After I read your post I looked at my copy of the book and it does indeed say that the camp is called “Camp Courage” in the book and that the author whose full name is actually Harriet McBryde Johnston (my bad) based the camp on a real place so it might actually be your camp! You should totally read that book! I saw no disability representation issues with the book at all except for outdated terms which are only there because the book was written years ago before the terms were updated. If you read the book please please review it here! I would love to hear your thoughts on it!

    Me too! :)

    1. Thanks for reminding me of it again! I definitely have to look into that one! (Sounds like it could definitely be Camp Courage, as it has been around for a while!)