Monday, August 21, 2017

Parenting Kids with Disabilities: Identity

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

Dear Parents,

When you think of your child's identity, what comes to mind?  Their color?  Their gender?  Maybe it's not something you think of much, because your child's identity - in many ways - is still forming.  But, if your child has a disability?  That's also an important part of their identity.

When I was growing up, I hated talking about CP.  I still have a hard time saying the whole diagnosis out loud (or writing it) because the first person I ever heard pronounce it correctly was a teacher that was super ableist.  I honestly just preferred that no one talked to me about it at all.  Ever.  Because I didn't identify as disabled.  I identified as nondisabled.  I was "just like everyone else" to me.  I was surrounded by nondisabled kids and adults.  It was the only example I had for what I thought people should be.  So I hated that I stuck out.  I hated that I had something that made me different.

It felt exclusively negative to me.  Like a giant eye staring at me because I was "that girl" with CP.  I never saw myself represented in the media, and if I did, the character was tragic.  One dimensional.  A plot device to pull at the heartstrings of nondisabled audience members.  Well, meanwhile, I felt like nothing and had to look away.

[Image is: Me at age 8.  I'm standing with new crutches but not looking directly at the camera.  My smile is uncomfortable.]
Chances are, your kid just wants to feel like they are not different.  And that's valid.  I think a lot of the reason why nondisabled kids have more self esteem and less mental health issues than kids with disabilities is that they are almost exclusively surrounded by people like them.  Where for us it's rare to find "our people."  And the people we do find, we might not have a lot in common with, so we resent being grouped based on disability alone.

If your child is uncomfortable talking about their disability, first and foremost?  Respect that.  Don't force them to talk about it with you (especially if you are nondisabled.)  Take their cues and let them lead the way.  Let them bring it up.

That doesn't mean never talk about it again.  Because that does imply shame, and if your child can't stand to hear the name of their disability spoken out loud, they are already feeling a lot of it.

So what can you do?

Try Speaking About Other Kids or Adults with Your Child's Disability...Positively:

Are you friends with someone who shares your kid's diagnosis?  Try talking about them in a flattering way:  "Yeah, he got the coolest orange wheelchair!" or "She told the best joke!  It was so funny!"  Hearing you build up others like them will take the pressure off your kid, and it will also allow them to see that "Mom or Dad or Grandma really likes hanging out with people like me."

Find Genuine Ways to Compliment Your Child That Don't Ignore Disability:

"Maya, You tell such great stories!  I love how you use your whole body to act them out!"

"Noah, You're so smart!  You're always figuring out ways to bring your toys with you!"

"Stephanie, You care so much about how other people feel.  You're a  great friend because you never want anybody to feel left out."

Find Examples in Media of Kids Like Yours Doing Something Your Kid Enjoys, Watch Them Together:

Kennedy YouTubing

Fox Sewing

Sami Doing Her Cousin's Makeup

Atticus Skating

Brooke Dancing

Sparsh Singing

Rhema on Bars and Beam (Gymnastics)

Give Your Kids Opportunities to Connect to Other Kids Like Them:

Growing to embrace their disability as a part of their identity is a process.  It will not happen overnight. But something that will help them get there is the opportunity to really connect to other kids like them.  Do you have a family camp you attend every year, geared toward families of kids with disabilities?  Great!  Did your kid make friends with the kid next door who has Down Syndrome like them?  Amazing!  Nurture that friendship!

Pay Attention to How Your Child Is Treated Both at Home and Away From You:

Is your child getting the message that you respect them?  Do your actions communicate respect?  We know how important it is to tell kids they are loved, but kids with disabilities also need the message that they are respected.  Unlike with nondisabled kids, respect is not necessarily a given.  So tell them:

"I respect you.  Your feelings matter.  You deserve to be treated in a way that makes you feel safe and happy to be you."

Make sure your child knows they can come to you if someone at school or other places is singling them out for their disability.  Ask questions, often, like:

"Do you feel safe at home/school?"

"Do kids (or brothers and sisters) treat you the same or different?"

"Does the teacher (or Mom, Dad, other family members) treat you the same or different?"

"What's fun at home/school?"

"What's not fun at home/school?"

But also know, they might feel sad and ashamed.  So pay attention to how they act when they get home from school or another location.

If your child is nonverbal, keep working to find whatever communication method will work for your kid.  Know that behavior is communication and receive it as such.  Stop in unannounced if you get a feeling that things aren't right.

Your Child Needs You to Be Okay With Their Disability:

So be mindful of how you talk about it.  (Does it mostly come up in conversation for being negative?  Does it come up in conversation solely as an obligation?  Do you feel bad your child can't do X?  Your child probably knows it.)

So practice discussing disability positively.  ("Your disability means you have connections to lots and lots of people who are like you.  They move like you/look like you/speak like you and that's great!  I love you so much that I'm going to keep looking until I find them.  Because I don't want you to feel alone."

Know that in many cases, if asked if we could get rid of our disabilities many of us would say no.  We don't want to get rid of the thing that plays such a big part in making us who we are.  We just want to get rid of the ableism surrounding us that makes us feel inferior for being who we are.

If you can accept your kids and their disabilities, parents, it's a powerful first step toward your child being able to accept themselves.

When I (Finally) Embraced Disability as a Part of My Identity:

As a teenager, I met a few friends with disabilities, but we only saw each other once, for a week out of the year, for three summers.  Otherwise, I kept with my trend of having exclusively nondisabled friends.  They would say things like, "I thought about calling you and Tara to come over this weekend, but we were all jumping on the trampoline and I didn't want you to feel left out."

( telling me that you were going to include us, but thought better of it, is supposed to make us not feel left out?)

At 18, I started attending a church, that initially welcomed me with open arms and made me feel accepted.  As soon as the third time I came, though, a well meaning woman told me she had a vision about me and God.  In her vision we were dancing, and she did not hesitate to tell me that I was "standing up."  That was the first time somebody there told me that my disability was not acceptable.  I chased that initial acceptance like a high for eight more years.  My self-worth was nearly destroyed in the process.

Around the time I stopped attending church, Tara and I moved into accessible housing.  A place where all of our neighbors are like us.  And while we were not friends with all of them, we did get close to one, who is now our neighbor across the hall.

It all really changed, though, when I started this.  Blogging.  Writing about CP and how it impacted my life.  Because of this, I got to connect with parents like you (some of whom have kids like I used to be.)  Because of this, I got to connect with other adults like me, who had the same experiences I did.  I got to make friends with people who accept me and truly love me for all of who I am, disability included.  Because they get it.

Because they're like me.

I sincerely hope that your child does not need to wait until their 30s to find this level of acceptance.  I hope this post helps you in your journey to both support and respect your kiddo as a whole, amazing human.

So that they can start loving themselves, ASAP.


  1. Great post Tonia. I'm so sorry you felt so rejected and unaccepted. Cerebral Palsy is NOT a bad word and you should have been made to feel that talking about CP was natural.