Sarah Kurchak: stop treating disabled people like a burden on society

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Author image: Jenna Marie Wakani

April is World Autism Month. In I Overcame My Autism and All I Got Was This Lousy Anxiety Disorderwriter Sarah Kurchak chronicles growing up with autism, her diagnosis at the age of 27, and the coping strategies she's used to live in a world built for neurotypicals. Read an excerpt from Kurchak's memoir below.

From casual conversation to life-or-death medical decisions, our society consistently ties the value of a disabled person's life to the value we provide -- or fail to provide -- to abled people.

Parents and partners of disabled human beings are praised and pitied for how hard they must work, how hard we must be on their time, their emotions and their savings. Most art involving disability is still about how abled people were challenged by, how they survived and what they learned from taking care of us and/or loving us. Something as simple as the common fears that parents express when their child is diagnosed with autism can revolve around these themes. It's not even about what we may or may not be able to share; it's about what we can't offer. "I'm afraid I'll never hear my child say 'I love you'" is a common refrain. "I'm afraid I'll never know that my child loves me" or "I'm afraid that my child will never know that they are loved" are not.

Throughout our lives, disabled people watch abled folk calculate our risk versus benefit. Are we a drain on public and personal resources? Does it cost too much, both emotionally and financially, to bring us into this world and keep us here? Does it cost too much money to house us, educate us, feed us or help us access the supports that can help us lead healthier and more fulfilling lives? Are we too much of a burden on the people who love us, on the social system or the environment? When, if ever, will we be able to support ourselves and become contributing members of society, whatever that means? Who's going to pay for it if we don't?

As I write this, the hashtag #PayNowOrPayLater is gaining traction in Ontario. It's a response to changes that our provincial government wants to make to the current funding model for autistic children. It's a complicated situation, far too nuanced for the level of discussion that can happen on Twitter or in the course of the average person's political engagement.

The proposed changes are bad, but the system that did exist was already broken and failed the autistic population both in terms of the number of people it helped and the variety of services it offered. In fighting to protect autistics and their families, perfectly well-meaning people are rejecting any conversations about what treatments and supports will actually help us and are virulently fighting for the status quo. This complicated situation has been further grossly simplified into the basic argument behind this hashtag: Autistic children who are denied services now will become a bigger burden on the health-care system as they age. The people who are trying to be on our side have reduced us to a mere calculation.

Even in death, the tab isn't settled. Fear of becoming a burden to loved ones is a common motivator for people who seek assisted suicide. Our absence is considered a relief. If one of us is the victim of filicide, we're asked to sympathize with the killers and how hard life must have been for them. It's just accepted that whatever we bring to their lives in return is not enough to offset our cost in the end.

Sometimes I make progress -- plodding, non-linear progress -- on the ways in which I try to make myself valuable to people. But that desperate, all-encompassing need to make myself useful, and the even more desperate feeling that I'm failing at it, have yet to budge.

In the years following my eventual autism diagnosis, my therapist and I spent a lot of time talking about my obsession with celebrity internet message boards. We tried weaning me off of them. We tried quitting cold turkey. I kept going back to them, so he kept going back to why I thought I needed them. I told him that I consciously knew I would never find any useful information about how to be worthy of others in anonymous bile spilled over celebrities, but I didn't know what else to do. That as long as I felt like I had to make up for who I was and what I couldn't be or provide, I'd look anywhere for cues on how to pay back that debt. Including the very message boards that once inspired me to spend months trying to come up with new methods for brushing my hair off my face … because two posters thought that Jennifer Aniston's method made her look bitchy.

"Have you ever considered that your worth doesn't come from your work, or what you can do for other people?" he asked.

"No," I grumbled, genuinely confused by whatever bonkers thought experiment he was trying to put me through. "Where the fuck else would it come from?"

"You have worth because you're a person," he replied.

I glared somewhere in his general eye region and laughed. I considered walking out and quitting. Why was I wasting my time and money working under the guidance of someone who could spout such lofty idealism with a straight face? How was I supposed to get anywhere in our ugly, dystopian nightmare world with a therapist who was dealing in daydreams?

I don't disagree with the sentiment. If you get me in a righteous social justice mood, I will tell you that we should think of our human connections as something deeper than a basic bartering system. That people are more than what they can do for you, and you're more than what you can provide in return. And that anyone who actively participates in perpetuating a society where that isn't the case is a greater scourge on said society than any human being who needs anything from a little extra patience to 24/7 care could ever be.

If I'm among feminists, I might add that the messages I receive about being a burden as a disabled person aren't entirely unlike the messages I receive about being high maintenance as a woman. Find me in earnest spirits and I'll say that a perfectly balanced ledger isn't always the same thing as a mutually rewarding relationship and there are so many immeasurable ways we can make each other's lives better just by being in them. I genuinely believe all of the above is true … for everyone not named Sarah Jane Kurchak.

I have first-hand experience with the fallout of chasing companionship at the expense of selfhood. Three years into my bedroom-based social experiment, I said a bit too much about my own worries in a phone call with my friend. "What problems could you ever have?" she replied. A few months after that, I listened to a male acquaintance I'd started hanging out with at my work co-op describe me to a third party, and it dawned on me that he was only describing himself.

I've since realized that the latter scenario is not uncommon for a certain type of person (i.e., solipsistic dudes), but I didn't really blame either of them. They may have been callous or self-interested, but their actions weren't exactly uncalled for when I'd put so much effort into cultivating the illusion that I wasn't different from them in any way. That didn't make it sting any less, though. There's a whole new crushing loneliness that comes with being allowed in the room but remaining unseen. I'm also lucky enough to know what the alternative to that emptiness feels like now. I've met people who see my value and forged relationships rooted in mutual respect and affection.

But I still struggle to take any of it to heart. That's how overwhelming the messages that disabled people receive about our value are. That's how deep the fear runs.

I sometimes joke that my only savant-like skill is the ability to keep running calculations of what I contribute to my loved ones versus what I take from them. But it's not really a joke. I keep tabs on everything from how balanced my conversations are to how much my parents continue to invest in me. I worry that believing people won't give up on me because they accept and value me as I am is just a cop out, and that I need to try even harder to be worthy of their efforts. The insecurities never fade.

When I finish my tabulations each night, I'm always a little in the red.

Excerpt from I Overcame My Autism and All I Got Was this Lousy Anxiety Disorder, by Sarah Kurchak, 2020. Douglas & McIntyre. Excerpted with the permission of the publisher. See the book trailer here, and contact Douglas & McIntyre's book concierge or see this map to purchase Kurchak's book at an independent bookstore.

Author image: Jenna Marie Wakani

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