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Parents often want to talk about how a disabled child enriches their lives.
Their comments section on social media swells with comments echoing how doctors could never have told them how "happy" their child would be. How complimentary the kid might be to their parents. Or how many life lessons a child may have taught their parent just by existing.
On the surface, this seems harmless.
Nice, even.
But, is it?
If you squint, it looks a lot like a nondisabled parent justifying a disabled child's existence because we make our parents feel good.
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Compliance Culture:
Disabled people are often forced into a culture of compliance from the time we are babies. Unlike our nondisabled peers, professionals and parents continue to exert power over us - to demand compliance - even into adulthood.
Because of the power differential, we have no choice but to comply. If we don't, we are threatened. Sometimes with surgery, sometimes with an imminent loss of insurance - if we do not do what is demanded of us.
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| [Tonia, posing with Anger from Inside out, making an angry face in her Not Here to Please You shirt.] |
Many of us also know that the most dangerous place for us to exist is, in fact, at home. Nondisabled parents were still being advised to institutionalize their disabled babies the same year the ADA was passed (1990). Kim Sauder has a must-read thread on deinstitutionalization. Read it here.
The increased risk of abuse Sauder references in her thread is all too real for those of us who grow up disabled in nondisabled households.
That means that often the people-pleasing nondisabled parents often praise in their disabled kids could easily be a fawn response to trauma. A way (often the only way) we can re-establish safety.
They are praising us for our response to trauma (often at their own hands.)
Performative Emotions as Protection:
In late 2019, I wrote:
As disabled people we are often expected to engage in performative emotions. Especially happiness. From the time I was very young, nondisabled adults commended me for my "positive attitude." I was "an inspiration," for just...being happy.
I learned early that my happiness was not just mine. It belonged to every nondisabled person I encountered. And more than that? It did not matter if my happiness was genuine, or reflexive.
It didn't matter if my smile was masking the hurt I felt when family members teased me, mocked me, said seeing "only the top part of [me]" with no adaptive equipment visible was "better."
And it didn't matter if I was genuinely proud of myself for mastering a skill I spent years working on. My happiness was theirs for the claiming. My victory was theirs, too.
What people don't speak of often, though, is how smiling is often our only defense. In dangerous situations? Encountering gross ableism? It's safer to smile than it is to call that person out.
So many nondisabled people want to claim our happiness. They want to absorb it because watching us be happy means they can feel extra good about their own lives. But so very often, they refuse to take responsibility for the very real ways they harm us.
They don't want to examine the reality that many of us are happy in our disabled lives & that a great majority of our strife comes from [nondisabled] people who ask that we smile on command for the crumbs of agency, of access, of autonomy we're given as if they're a favor and not our right.
So many just don't care if a smile is genuine or not. My family actively discouraged my genuine smile, because my CP showed too obviously in my features. I was told to "smile nice" and "put my chin down," over and over. Never mind that my biggest smile was my happiest.
But it didn't matter. The bottom line was still the same: my happiness was about their comfort. And they weren't comfortable with me looking too disabled. So, assimilate. Smile on command. Smile to keep yourself safe. Why aren't you smiling?
I've spent a lifetime smiling for others. But I don't owe them my happiness. I have fought and struggled the majority of my life to get a taste of genuine happiness. It is not theirs to claim. If you have to smile to survive, I get it. I've done it.
Know that you have the right to be genuinely happy, to smile, or not. You have a right to all your feelings, even if they don't make those around you feel good. You're enough when you smile. You're enough when you don't. You're human. You matter. So smile. Or don't.
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Despite the pervasiveness of nondisabled people not so subtlely justifying our right to life because we are compliant, our lives have value.
We have value because we exist.
We have a right to life because we are human.
Fully and imperfectly human.
This is so powerful. Thank you for sharing this with the world. I am continually learning and am thankful for disabled adults for teaching me to be a better parent and better human.
ReplyDeleteThanks so much, Sarah. That means a lot.
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