MY DISABILITY DOES NOT DEFINE ME
ORIGINALLY PUBLISHED IN 2018.
What is normal? I don’t think normal exists because I’ve been living with a disability my whole life. So I don’t feel that normal exists, but society believes normal exists because, as a society, we’re held to such high standards, and since the high standards exist, we think those high standards are normal.
When I was a couple of weeks old, I had a blood clot on the left side of my brain. The blood clot led to me having a stroke. The stroke resulted in me being hemiplegic and having cerebral palsy. I grew up with a family that taught me to embrace my disability and wanted me to know that the world will not give you special treatment because you are ‘special.’ My family was honest. I was held to the exact expectations of my two sisters, Meghan and Maggie. Even though I didn’t at the time, I am grateful for their honesty and the expectations I was held to.
In elementary school, my peers didn’t care that I had a disability. At that age, you are so happy when making friends, and societal perceptions of disability aren’t really ingrained. So I didn’t fully understand what having a disability meant.
As I grew older, navigating my disability became more of an obstacle. I didn’t understand why I had a disability. Making friends was harder, especially in high school when I wanted everyone to like me, and I wanted to be friends with everyone. Talk about validation, right? I learned a lot from that. The most important being: don’t double text. There is a reason they haven’t texted back, even if it has the read✓ at 2:30 pm, and it’s now 10:00 pm.
Meghan and Maggie are able-bodied, and it was really hard navigating my relationship with them growing up (and still today). Not only because there were many things that I couldn’t do that they could (and a severe case of FOMO), I didn’t feel that close to either of them.
I hated having a disability; I didn’t understand why this happened to me. Looking back, I think a lot of that had to do with societal perceptions on disability. Ableism is still very prevalent, and I’m very aware of it. All my life, I’ve had things said to like: “You’ll Never Be Able to _______!”, “You’re So Inspirational!” and “You Don’t Look Disabled…”. People who have known me for my entire life have forgotten that I have a disability and have disregarded my entire experience as a disabled person. This plays into the idea of disability erasure, the tendency to ignore, remove, falsify, or re-explain evidence of disability in history, academia, the news media, and other primary sources. In its most extreme form, disability erasure can include denying that disability exists (Urban Dictionary). I’m using Urban Dictionary’s definition of bisexual erasure because I couldn’t find a meaning for disability erasure (which is a form of disability erasure).
Along with Ableism, Inspirational Porn exists. Inspirational Porn is a term used to describe a shared tendency in which able-bodied people condescend to those with disabilities by suggesting they are brave or special just for simply living their lives (Huffpost). I’ve been going to Zumba for a while now, and I love it. But, almost every time I go, I have someone come up to me after and say, “You Are So Inspirational!” or “You Did An Incredible Job!”. I am not your inspiration, nor do I want your pity. I’m living my life the best way I know how and I don’t need your approval on how ‘well’ I’m doing.
I didn’t fully embrace my disability until I got to college. I’ve been put in boxes my entire life. When I got to college, I became more comfortable in my identity as disabled and other identities that I had denied because of societal expectations. Through the REACH Program, I was able to become more outgoing, join organizations like the Bonner Leader Program, and write for HER CAMPUS.
Disability is just a word. Yes, it comes with stigmas and setbacks, but it would be great for more education on disability rights and awareness. We have a long way to go as a society in terms of disability, but we’ve come a long way even in the last 50 years.
