I Was a Disabled Kid — Here’s What I Want You To Know
Aug 15, 2019
Above: Christa in 1991.
Maybe your kid has a disability. Or maybe you know a kid with a disability. Either way — I was a disabled kid, and I can tell you this: they're going to be OK. In fact, their life is going to be wonderful.
I’m tired of the narrative that learning of a disability is “bad news.” I want the discovery that a child has a disability — congenital or acquired, at any stage of their life — to be an opportunity to celebrate getting to know who this person is going to be in the world.
Disabled is not a bad word, it’s simply the right adjective for a lot of us.
OK, OK, I feel the comments coming, so let me clarify my thesis statement. Disability is a broad term that encompasses countless physical, cognitive and intellectual differences, and the impact of these differences on a person’s — and a family’s — life differs enormously depending on a multitude of factors. With that in mind, I’m speaking in broad terms and wish to challenge, namely, the inherent negative value placed on disability.
So let’s get back to the perks.
More From Christa: I Couldn’t Find Any Disability Maternity Photos, So I Made My Own
Having a disability means having a community
Like many other common experiences, disability is a means of connection between people. Because disability can often mean needing support (a.k.a. equal access and opportunity), it’s a community with a beautiful base of interdependence. Independence is awesome. But helping each other is pretty great, too. Kids meet other kids like them, and if you're a parent of one of these kids, you'll meet other parents like you. You will laugh at jokes together only you and they could understand, and you will recognize each other’s challenges — and tears — in a way no one else can.
If you find yourself in this situation, initially learning about your kid’s disability can feel isolating. But I promise: your people are out there, and you and your kid belong.
It’s a bummer at first, but you get used to it
I didn’t want to lose my leg to cancer. If I or anyone in my family had been asked, "Would Christa like to have cancer and her leg amputated?" We’d surely reply, "No, thanks!" and send those non-existent gods of choice on their way. The experience of cancer was painful in every way. Illness, injury, surgeries, the long processes of diagnoses... All of these things are difficult and no one would choose them.
So — we grieve. We grow. We learn a new normal. Other experiences come along that become our present, while disability becomes part of the backdrop. And then, we get to love.
Disability is a kind of superpower
I often think of disability like having been to a country that not many people have been to, and I get to tell them all about it. How I move through the world differently, what I notice, what I seek, how I struggle, how I problem solve, how I excel. I love how I do things differently. If it's your own kid that's the first disabled person you know, you especially will get to see the world with a new perspective. You and your kid will become experts on their disability, its strengths and barriers.
Having a disability can mean feeling hurt and left out. Actually, it will mean feeling hurt and left out.
Having a disability can mean feeling hurt and left out. Actually, it will mean feeling hurt and left out. And that sucks. But being empowered with a disability means celebrating the highs and not denying the lows. It also means becoming a fierce advocate. As the parent or guardian or aunt or uncle, you get to develop ally superpowers. Find the barriers, work to remove them and show that kid how to speak up when they encounter discrimination — of any kind.
Keep in mind: the goal is not to overcome disability, but to work with it. Disabled is not a bad word, it’s simply the right adjective for a lot of us.
Related Reading: 5 Meaningful Ways To Teach Your Child About Disabilities
Ableism. It’s a thing.
Ableism is “discrimination and social prejudice against people with disabilities.” (Thanks, Wikipedia.) Ableism also deems folks with disabilities as inferior to the non-disabled (or as I like to call them, muggles). The narrative that a disability is bad news? Ableist. Part of your discomfort with that news? Ableist. Don’t feel bad, it’s a really hard one to untangle, and unavoidable in this culture that constantly stresses an ideal (thin, white, conforming, cis, straight, non-disabled, etc.). You can help dismantle that — your ally superpower at work!
Life is like a box of chocolates (said one famous disabled character)
You already know this as a parent: you never know what you’re going to get. There is nothing about our children we can predict — their careers, their relationships, their gender, their propensity for sequins or their aptitude for puzzles.
And I know this as a parent: it’s impossible not to be attached to some ideas and hopes for our kids. But finding out a child has a disability, at any stage in their life, is one more discovery about who they are. And possibly one more chance to let go of what you thought was going to happen, and welcome what is.
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