My Journey to Rejecting Ableism and Embracing Disability Identity

Wednesday, October 25, 2017

White arrow painted onto cement on a long road fading into the distance, surrounded by trees.

I wish I could tell you the exact moment I realized that ableism was surrounding me, being directed at me, and I was participating in it by saying nothing. Instead, there were so many little moments and a few big moments – a journey – that finally shook me from my fear, my cowardice, and my shame. Because I was ashamed of myself, I’d been hiding who I am.

Who am I? I’m Susan and I have a disability. I’m also, a wife, a mom to a disabled child, a military spouse, an advocate, and a podcaster. I’m so many things, but what I’m most proud of is being a disabled woman.

It took time to get here. Reflecting on my childhood, there were so many signs that something was going on:

  • The kindergarten teacher who told my mom that I couldn’t sit still or pay attention, and I flipped around my letters.
  • The fourth-grade teacher that had to find a quiet place in the classroom for me because I couldn’t stop talking to my friends or get my schoolwork done.
  • The feeling of helplessness, of wishing my brain was different, and hoping for a reprieve from the chaos that lived inside of me.

Years would continue to go by, and I would feel more and more lost. But I always played the clown, and I kept people laughing. I couldn’t let anyone know how truly frustrated I was. Finally, in seventh-grade, I was tested for disabilities. When the diagnosis came, I felt relief. Finally, something good.

I am dyslexic, and I have ADHD, Auditory Processing Disorder, and anxiety. That’s a lot for a kid, but I was lucky. My mom started advocating and getting me help. I started seeing a therapist who helped with my organization and anxiety. I went on Ritalin, and it worked. I learned when to ask for help.

My teenage years were odd. Being on Ritalin and in high school didn’t seem normal. I never said a word to anyone because I was ashamed and embarrassed. Why wasn’t I like the other kids? I looked like them, but I wasn’t like them.

High school was tough. I never had an IEP or a 504 Plan. We were a military family stationed overseas, and because of that I was ineligible to receive a 504 Plan. I was also denied an IEP by my high school.

Then came the moment when I had to admit that I have a disability in order to make sure I was educated the way I’m supposed to be. I remember the first time I walked into the disability services office. I was scared. I really thought I was going to throw up. But I did it, and I didn’t throw up. It felt amazing.

Still, I was hiding my disability identity. I didn’t see disability advocacy the way it deserved to be seen, the way it deserved to be acknowledged. I didn’t understand because I was never taught. Naively, I thought becoming an advocate was about education. I was getting a minor in special education, so I assumed that disability advocacy was only about special education. I had to be taught, and I had to recognize the ways I had hurt my community.

For instance, I didn’t stop people when they used the “R-word.” I stood by, gripped in fear and shock, and said nothing. I did nothing. I betrayed a community of people because I was silent, because I could be silent.

I should have spoken up, I shouldn’t have let fear control me. I shouldn’t have been ashamed. Because having a disability isn’t shameful. Acknowledging disability isn’t shameful. It’s part of who I am.

So many moments of realization like this woke me up.

  • Experiencing comments like, “You’re dyslexic? But you seem so smart!”
  • Seeing the meme that claims ADD/ADHD is fake and what really needs to be done is more spanking.
  • Recognizing that I do have an invisible disability, and that I have been afforded access to resources that many of my peers may not have.
  • Asking questions, instead of making assumptions.
  • Being part of a community, and recognizing that everyone who has a disability is a vital component in that community.

I’m still learning, and it’s my hope that my community will continue to be my teacher.

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