What is a disability, even?

Bravebutafraid
Jun 30, 2023
6 min read

If we're going to go around labeling people, I like "nonconforming" much better.

Disability is such a fraught term. At first, when I started to write this, I thought, Humans must be the only creatures for whom non-conformity does not mean instant death and yet is constantly "othered." If you're an ant or a bee or a polar bear, failure to strictly conform to your community means you're toast. I know neurodivergence exists in nature -- "mutations" -- and of course the history of evolution is one long, beautiful example. If we have the opportunity to be different, and through those differences we make humanity more marvelous and expansive, shouldn't we celebrate those deviations from the norm? The neurodivergent are, after all, often creators, scientists, and entrepreneurs.

I think my use of the qualifier "human" is too broad. I am familiar with where I live, but what about non-Western, non-patriarchal cultures? I am learning first-hand about Ableism in American society. I can only speak to my direct experiences, but it's eye-opening. I still know very little.

Ableism: ideas, practices, institutes, and social relations that presume ablebodiedness, and, by so doing, construct persons with disabilities as marginalized (Chouinard. 1997: 380).

And then there's the medical model vs the social model of disability:

The medical model of disability views disability as a problem or a deficit located within individuals. Because disability is an individual problem, disabled people must fix themselves — through rehabilitation, medication, prostheses, assistive devices, and so on — so that they conform with or more closely match the bodies, minds, and behaviors of nondisabled people. In this case, the problem is in the body or simply is the body of the disabled person.
The social model, on the other hand, views society as the problem. This model distinguishes between impairment and disability. An impairment is a person’s physical, mental, emotional, or intellectual difference(s), while disability refers to the social consequences of having or being presumed to have an impairment. It is not a person’s impairment, then, but rather society itself which causes someone to be disabled. In this model, it is not the individual and their body and impairments that need to be corrected, but the society that prevents disabled people from participating equitably. This model does not fully theorize impairment and thus falls short of considering embodiments and lived experiences of disabled people, but it can be useful to help identify and potentially avoid ableist biases.*

There's a book on my to-read list called Disability in Different Cultures - Reflection on Local Concepts, edited by Brigitte Holzer, Arthur Vreede, and Gabriele Weigt. ** It's over twenty years old, but it could be an interesting starting point. In the meantime, I'm just going to muse one what I observe in my own white, western, patriarchal society.

My kids attended our town's summer rec camp this week. It was great. Staff, counselors, junior counselors, other kids and parents were all wonderful. I made myself available in the afternoons to be on-call as a volunteer in the event that C had a hard time. Yesterday, after dropping B & C off at camp and going grocery shopping, I dressed up like my dad during his winter runs (long tights/leggings, winter socks over my leggings, pullover with hood) and ran up the hill to investigate my favorite dragonfly spot while hopefully evading the black flies. Halfway through my run/dragonfly photoshoot, I received the call. I was less than a mile away from the school, so I trucked down there in the 80+ degree heat in my costume. Thank god my children are too young to be embarrassed of me.

C was a little tired and weepy, so we sat and cuddled, listened to my new favorite song, If I Were a Fish by Corook, and then rejoined the group when the firetruck arrived. Today was "Supersoaker" day, and the firetruck generously sprayed its ENTIRE TANK in the school parking lot for the kids to splash around in. Everyone appeared to have a ball, but C probably enjoyed it the most. He was one of the only kids lying on the pavement "treading water" as the spray rained down on him. He rolled in the melting rainbow chalk creations. He shrieked with joy. He was sensory seeking to the max. My daughter ran around blowing bubbles and sitting in little muddy, grassy marshes created where the pavement met the grass, crafting something with her friends. Neither of my children is afraid of getting dirty.

C had a few teary moments later, but they could all be traced to heat, fatigue, and too much jostling by the other kids. He didn't retaliate in a harmful way (at least as far as I know). He just reached his maximum capacity. I'm sure other kids did, too, but C is not able to "hold it together" for conformity's sake. He perceives slights as overt antagonisms, and he gets lost in his own emotions.

I'm always trying to sort out what is attributable to age, gender, ADD, sensory processing, anxiety, my parenting, etc. But today I thought: what does it matter? He has good friends, is physically healthy, met his academic goals this year, and is empathetic and compassionate. Why does it matter if he waves the white flag at 1 or 2pm when others can make it until 4pm? It seems like such a minor thing. And yet, if he doesn't get the break, if he doesn't get his medication, all hell breaks lose.

Kids in general are of course pretty crazy. After the firetruck, the kids got changed into dry clothes. There was another little boy sitting on the floor in the bathroom stall, completely naked, playing with the drain and taking his own sweet time getting dressed. He and C had a minor argument, and the other little boy tattled that C was sitting on "the thing that you're supposed to pee in." I threw up a little in my mouth but didn't say anything. Finally, after what seemed like eons, C got his underwear on (backwards), his shorts on (probably backwards, too), and washed his hands (hopefully well).

It was a good day, both kids had a ball at camp, and I enjoyed myself as well. But, and perhaps this is giving myself too much credit, one of the reasons it went well is because my number one priority at the moment is being available. This means no outside distractions and no activities I cannot immediately drop. I'm a little discouraged contemplating the next twelve years of school ahead of C. I'm also a little resentful. Not at him, but at society as a whole. No matter how fantastic many public schools are, there's still a heavy emphasis on strict conformity. If you can't hack it, you're labeled disabled. Kids only receive extra breaks and one-on-one time if they're "disabled" (I'm generalizing here).

C will be a fantastic adult, but if I want him to be successful, e.g., happy, healthy, and not pathologized, then at the moment it's clear I must sacrifice my finances and my career. Not forever, of course, but for a significant period of time. And this really isn't meant as a complaint when it comes to my children: they're super fun, creative, loving kids, and most of the time I'm so happy I get to be with them. But why do I have to choose? Why is it both a privilege and a shackle? Why does it seem like 90% of the burden falls on the parents? Medical care is only subsidized if you qualify for a disability, and even then there are geographic limits and the yearly approval process.

I guess I'm more confused than when I started this thought experiment. As always, though, the experience of raising two human beings is expanding. My words are completely inadequate, but that must be part of the process, too. It's humbling. Sometimes I feel embarrassed by my writing. Am I trite? I still have it so well, so why am I complaining? I'm afraid, too, of not being believed. If I say that I have experienced a lifetime of gaslighting, will people scoff and laugh? Sometimes they do, even people close to me. I need to shut out the noise, bring my mind back to focusing on the objective, which is to understand myself and my family more and create community. I have the right do do that, and perhaps the responsibility, too.

The struggle of a parent of a neurodiverse child

is both expanding and limiting,

but even in the way it limits, it expands, too.

Expanding in the way it teaches.

Look at life this fresh way,

consider this alternative.

The new perspectives,

the bloody battles.

Everything is 110% all the time: sound, color, light, emotion.

It's like the life of a dragonfly, condensed to one month of frantic, glorious movement.

Here are people you never truly stopped to notice before.

You are no longer a zombie walking through life,