If you grew up as a child with a disability in the ‘80s and ‘90s, you heard this phrase at least once: “I am not defined by my disability!” It was usually spoken by some well-meaning advocate promoting equality. You see, in the ‘80s and ‘90s we preserved the self-esteem of disabled children by trying to make them forget they were disabled at all.
I remember the first time I heard it. I was nine years old. I was in physical therapy, practicing standing with my new walker. There was an older boy who attended the same physical therapy clinic and would talk to me during sessions. I thought he was so cool. He was 12 years old and played wheelchair basketball . He had the ultimate sports wheelchair. It had no handlebars and electric blue spokes on the wheels. He was one of only a handful of people I knew who couldn’t walk. Because he was a few years older than me, I looked up to him a little bit.
My physical therapist had told me to tell her when I needed to take a break from standing, but I was showing off.
“I got this! I can do this!”
I silently repeated that to myself, but my legs were starting to quiver with fatigue. I finally caved and said, “Can I sit down now?”
I must have looked defeated, upset, or disappointed because that boy said, “No big deal! You’re not defined by the fact that you can’t walk, champ!”
He then tossed me these fuzzy dice that he had dangling off the back of his wheelchair. I kept those fuzzy dice, and for the next three decades, I would parrot some version of that phrase. “I am not defined by my disability! It does not define me.”
I actually talked myself into a state of word “sensitivity.” I didn’t want to be called a “Little Person.” I was “Short-Statured.” I promoted person first language. Please don’t call me a disabled woman. I was a “Woman With a Disability.” That was a distinction without a difference but at time it meant something to me.
I wanted my disability to be the least important part of who I was. I was conditioned to believe that in order to be happy and successful, I had to pretend I wasn’t disabled. I was moving through life denying the biggest part of who I am. But I realized that being disabled is as much a part of who I am as being a woman. I would never say, “I am a human being who is a woman.” Or “I am a person who is a female.”
Why shouldn’t I feel the same way about being disabled? So I allowed myself to say it. “I am a disabled woman!” Then, I had an epiphany. “My disability does define me!” My strongest traits are those I gained because I’m disabled, not despite my disability.
I am strong and determined because I couldn’t walk for 28 years! When you are disabled, everything you do requires a little extra effort. Try opening a manual door when you’re in a wheelchair. That should be an Olympic sport! When I was young, I learned that I didn’t just have to outwork other people to be successful, I had to outwork a world that was inadvertently designed to ignore my existence.
I am a unique and highly skilled problem solver. I am 3 feet and 11 inches tall, and I live alone. I take an object that people may not use for purposes other than what it was designed for and use it to my advantage. I’ve strategically knocked over every floor lamp in my apartment I had just to change a light bulb. Even the latest, most expensive LED light bulbs can’t last forever. While you may use a broom to clean up crumbs, I use mine to reposition my shower head. There’s nothing worse than almost drowning every time you take a shower because the shower head is pointed too low.
I am fiercely independent. I grew up in one of the most inaccessible homes ever built. Not only was it two stories, but my wheelchair couldn’t fit through any of the doors. My mom made the conscious decision to not carry me around the house. She was a busy mom with two small children. She trusted that if I wanted to get somewhere badly enough, that I would figure out how to get there.
My sister and I had a great playroom. It had a full play kitchen, two Barbie houses, a fort and more dolls than FAO Schwartz. That room was my favorite room in the whole house, but it was on the lower level. My mom watched as I would scoot down the steps on my butt and later crawl back up on my hands and knees when she called us for dinner.
My mom got a lot of heat from family members. They thought it was cruel that I struggled during moments where she could have “helped.” There’s a fine line between helping and hindering someone. My mom never crossed that line.
I am optimistic. In 2003 I had a stroke, that almost claimed my life. Following my stroke I was in a coma for five days. When I woke up, I was filled with so much uncertainty. I couldn’t feel the left side of my body, my memory felt fractured, and simple tasks like putting on my shoes left me in tears. I consistently put my shoes on the wrong feet. On the few occasions I put them on the right feet on the first try, I couldn’t manage to figure out how to tie the laces. I was at my lowest point and felt the most defeated. I had ever been in the 23 years of surgeries, injuries and uncertainties.
The best doctors would offer me was a vague prognosis of “things should go back to normal with time.” Call it naiveté or sheer desperation but for 6 months I woke up every day believing today would be the day things went “back to normal.” My hope was the only thing that I could be certain of. It was also the only thing I could control. So I held on to hope with all my might!
So yes, please define me by my disability, but do not apply your own ableist interpretation of what it means to live with a disability. I don’t “suffer” from OI and epilepsy. I have both those disorders, but I haven’t “suffered” a day in my life. Suffering is a state of my mind. My body has endured physical pain beyond my own comprehension. I face my fair share of challenges, and I struggle. I embrace those struggles, because I know struggling yields strength. I live with, I endure, and I manage my OI and my Epilepsy.
To think someone with a disability “suffers”24/7 fosters feelings of pity. No, I don’t want to be defined by your pity. When I break a bone it hurts.When I would have a seizure it would suck every ounce of positive energy out of my day. I’ve broken more than 100 bones, and have had hundreds of seizures.
The numbers may sound staggering, but they are only moments and events. They in no way encompass my entire 39 years on this planet. My life does not suck!
Sure, that broken Tibia that wouldn’t heal and required surgery sucked. And the day I had a seizure while driving which totaled my car definitely sucked! However, as a whole I have a great life!
I still get the occasional “do gooder,” with a misguided sense of empathy who insist on telling me that they “feel bad” for me.
Don’t! Just please don’t.
Taniya is a 39 year old woman with Osteogenesis Imperfect type 3, living in NY. She is a former actress who turned speaker and advocate. After a stroke, at 23b years old left her with uncontrollable epilepsy she left the stage to pursue her passion for advocacy and inclusion in arts and education. She has brought her “Dream Bigger Than your Biggest Challenge” philosophy to elementary, middle and high schools across Long Island. In addition to working directly with students she pairs with educators to teach the importance of inclusion in arts and in the classroom.
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