What it Was Like to Grow Up “Not Allowed” to Be Disabled

I’ve never really talked about my grief, my bitterness, my anger, on this blog. Or… ever, I guess. The past few years since this journey of knowing I’m autistic started, I’ve been so focused on advocating for autistic kids, and other disabled kids. Because, well, I was doing that before I knew about autism. I was into disability rights precisely because I knew what is was to be disabled, but I wasn’t allowed to be. This statement isn’t to make anyone look bad, because it was a different time then, in a small town in Newfoundland, and everyone did their best.

Let me explain. I was born sick. I spent a month in the hospital before coming home. I have had, to date, 3 open heart surgeries, and countless other procedures. I have always been disabled. But, I never used that term. Nobody did. I used terms like strong, brave, fighter. And I am still all of those things. But the problem with not allowing myself to use the word disabled, to not acknowledge that I had difficulties, differences, was that I was constantly trying to make up for, and overcome, things that I could not overcome. Should not have had to overcome. The refusal to view myself as disabled (both from my own misconceptions and my family’s understanding that disabled was something you did not want to be) prevented me from understanding myself.

When I was growing up, my mother did take me to occupational therapists, and doctors. She tried to tell them that there was something deeper going on than simply the heart problem. They were quick to brush her off, telling her that, yes I was maybe a bit slow to hit milestones, but – look how good I was doing! Look how smart, look how much I could read! I could talk, I was ALIVE, when I wasn’t supposed to be. Wasn’t that enough? I spent my days watching documentaries on disabled folks, just to see them. See them and say to myself – see, that’s disability. You are not that. They have it hard, you don’t. People would pass by me watching them and say “see? It could be worse!”, so I started to say that too. Even though sometimes, I would look at their mobility aids, look at them use the term disabled, look at them having friends that were like them, and think… I wish. And then, of course, I would feel terrible. How could I look at someone disabled and be jealous of them? How could I look at someone dealing with things I never had to deal with because I wasn’t visibly disabled and dare to think that, maybe sometimes… it must feel nice for people to know that you were different. To know why you moved differently, thought differently, went through life differently. And have people know that too. What a terrible person I must be.. to think that. To think that I would ever be like them. That I would ever be worthy to call myself disabled. I hadn’t gone through enough, hadn’t done enough, to be one of them. They had a reason – I just wasn’t trying.

Of course, years later, I know that visible disability doesn’t absolve you from the comments, the questions, the accusations that you aren’t trying hard enough. But at 9, 10, 12 years old, that was my thought process. And I finally want to acknowledge every part, every time that I longed for a label, longed for someone to see that something was going on with me. But, nobody did. So, I just thought I was a bad person, an annoying person, an unworthy person.

So.. I kept going through school, through life, “not” disabled. I knew something was different, but I knew that it was most important to just keep being a fighter, and strong, and keep overcoming. So I didn’t tell anyone when I was five that I felt very different from all my friends, that I didn’t know where we were going even when we’d been there a hundred times. When I was about 10, I started getting migraine headaches. Ones that would only go away if I laid in a pitch dark, silent room, and slept for 10 hours. I thought they came on because I wasn’t sleeping at night. I thought I was just being too high maintenance when I would cry every morning before school, when I would beg for the tags to be cut out of my clothes, when my arms would feel like they were burning when I would wear long sleeves. When I was obsessed with things, I was just passionate, if a little tiring.

It was a good thing that I was close to my cousin, even though she was four years younger than me. It was fine that I only wanted to hang out with her, and even as she surpassed me in things like athletic ability, nobody commented on it. It was just the way things were. Sure it was a little funny, and sure, maybe I just needed to force myself to try a little harder, but it wasn’t because I was disabled!

I figured out how to stay in people’s good graces until middle school. And then shit hit the fan. I just could not figure out what I was doing that was so terrible, so annoying, so disgusting that the entire seventh grade knew who I was, and knew to stay away from me, and why the teachers seemed to just avert their eyes whenever they saw something happen. But of course, I wasn’t disabled. There was nothing… going on with me. I must just not be trying hard enough. That’s what people said. That’s what it seemed like everyone said. So I kept trying. Fuck, I tried. It must not have looked like it from the outside, because the comments kept coming. About what I should be doing, what I could be doing.

When I got to high school, it was a little easier. I didn’t draw attention to myself. I had a friend or two, and I had figured out how to appear just enough like everyone else. I wasn’t popular, and sure I had a few people roll their eyes whenever I would pass them, or show up to class, or say something out of pocket – but it wasn’t nearly… like it was. I did get diagnosed with major depression, and anxiety, but then I got some medication, which was a plus, even though it didn’t fully work. Everyone was talking about getting their driver’s license, and I just remember thinking back to the trips in a car, when I would look around at the road around me, and know that there was too much happening for me to ever be able to process it all. I said that to a few people in high school, and they said – it just looks hard, but it’s actually easy! It comes naturally. I didn’t remember anything ever coming naturally before – at least, nothing that anyone else seemed to do. But of course, when you’re 16, you’re supposed to learn to drive. So… I tried. I did the written test, I did the in-class driving school, and I aced it. And when the teacher told us we were ready to drive, I remember her commenting – to the entire class – that I looked terrified. I went home that day not wanting to drive, but we had spent the money. I was 16. It was time. So, I drove the car, shaking the entire time. And when I got home from the driving lesson, I fell to the floor and cried. Screamed. That I wasn’t doing it again, that I couldn’t. I shook for what felt like hours. I felt like I was going to get sick. My mom started looking things up online, things she had pushed to the back of her mind all those years ago. She looked up social anxiety, she looked up dyspraxia, she looked up OCD. We went to a couple doctors that met us with confused and pitiful looks. One day, we spoke to a doctor that said: ” I think you might have autism”. I shook my head. Hard. I said no. And I left, and never went back to her again. I did hours of psycho educational testing, tasks that made me cry, tasks that made me anxious. I passed the language portion with flying colours, and barely passed the visual spatial portion. They diagnosed me with Non-Verbal Learning Disability. I looked it up. I saw countless articles detailing its similarities to autism. I spoke to several women who said that that was their diagnosis before their autism diagnosis. That I probably had autism too. I got upset with them. I told them they shouldn’t tell me that. I told them that I definitely didn’t have it.

When I was 17, I had to start working. But where was I supposed to work? I couldn’t serve tables, retail was too loud, too fast, too bright. So I found a job that I thought would accommodate me, a camp counsellor for a camp for children and adults with developmental disabilities. I got the job, and for the first few weeks, I had no idea what I had gotten myself into. I was drawn to these people, but I was responsible for care I had never done. I was watching them move, watching them talk, watching them go about their days, and seeing myself in them. One boy, a boy with autism, told my boss that I understood him better than anyone who had ever worked there. Later that night, I sat in the staff room and cried. Hyperventilated, in fact. It was getting harder to go on like nothing was different. It was getting harder to pretend that I wasn’t different.

When I finished work that summer, I researched autism. Obsessively. I bought books, I watched videos, I read blogs. First I started to pick out traits I didn’t identify with… but it became harder and harder the more I read. The more I watched. The more I forced myself to look at everything I had pushed back for years.

In university, I took a class on Autism. I met an autistic man also in my class, and told him that I thought I was autistic. He looked confused, but he didn’t comment much. My interest in autism grew even stronger during those years. I had been receiving accommodations for the first time in my life. I was meeting people that I didn’t have to hide myself from. People that I was telling that I needed help with things. People that didn’t make me feel bad for needing that help.

This year, I finally got diagnosed with Autism Spectrum Disorder. It took quite a while, especially because I had rejected the diagnosis years ago, but I got there in the end. And I always thought that was the end of the journey. That I had my answer now, An answer that I should have had years ago, would have had years ago, if people listened to my mother, if I didn’t misunderstand what it meant to be disabled, if one of my teachers had said something instead of looking away.

I’ve been diagnosed for about six months now. I’ve delved deeper into advocacy for autistic kids. I’ve discovered the systems that keep them down, keep them controlled, the systems that try to stop them for “looking”, “seeming” disabled. And I get it, because I wasn’t allowed to be disabled either. I’ve been grateful for my diagnosis. I’ve been relieved. I’ve been proud.

But I haven’t let myself feel angry. I haven’t let myself explore the people, the systems, that failed me. That failed me as a physically disabled child who was just looked at as lazy when she was tired in gym class, the autistic student who was looked at as targeting herself and being purposely a tattletale when she begged the teachers to get the girls to stop bullying her. I haven’t explored how it feels to be disabled without knowing, without admitting, without being allowed to show it, without being allowed to “fall back on it”, whatever that means.

I haven’t yet gotten to the core of how it impacted me to be trying so hard to be something I never was, and something I couldn’t have ever been. It’s a deep deep wound that I am trying – and sometimes it feels like – failing to heal.

Published by Taryn Jaye

Autistic. Writer, advocate, and future therapist. Yes, I support individuals with high-support needs.

3 thoughts on “What it Was Like to Grow Up “Not Allowed” to Be Disabled

  1. This is so familiar to me. And it’s horrible, cruel, and unfair.

    Your pain and anger are real and valid. And I’m glad you’ve realized they’re there, so that you can express them and work through them without them poisoning you for years to come.

    Liked by 1 person

  2. I can relate to a lot of what you’re saying here. Not being dxed until adulthood, and society’s such monumental ignorance and intolerance towards disability (which is only slooowwwly starting to change) absolutely sucks!!! The only advice I have (not that you asked) is to be patient with yourself, and give yourself permission to feel what you feel. It’s valid. Self compassion helps too (though it’s hard to learn, especially if you don’t have a support system that can reinforce it)

    Like

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