What I Wish I’d Known About Disability When I Was Younger


This piece by Robyn Powell originally appeared on The Establishment, an independent multimedia site founded and run by women.

I was born with arthrogryposis, a physical disability that affects my muscles and joints. I have used a power wheelchair since I was 3 years old, and I have limited use of my arms and legs.

But though I’ve had a disability my entire life, I didn’t identify as “disabled” until my twenties.

Growing up, family and friends would tell me I wasn’t disabled — I was just different. Some would refer to me as “differently abled”; others would tell me I was “physically challenged.” My “favorite” euphemism, by far, was “handicapable.”

To be fair, I know my family and friends, who have always been supportive, never meant to offend me — and, at the time, their words didn’t hurt me (or at least not that I was consciously aware of).

Then, during middle school, I was introduced to an entirely different way to frame my disability: person-first language. Person-first language emerged in response to society’s history of discriminating against the disability community, with the aim of emphasizing that the individual is a person who just happens to have a disability. In other words, I was a person with a disability, rather than being defined by my disability.

Though I’ve had a disability my entire life, I didn’t identify as ‘disabled’ until my twenties.

For a while, I really liked person-first language. It felt validating to be finally seen as a person, rather than just some girl in a wheelchair — something I had yearned for for many years.

It helped that I went to a high school specifically for students with disabilities. There, teachers and other staff were frequently telling us to remember that we were people first — that we weren’t our disability and that we should never forget that.

But once I started college and most of my peers did not have disabilities, my framework for understanding my identity changed yet again. I vividly remember heading to class one day and seeing a bulletin board filled with information on person-first language and how to interact with people like me. I was excited to see person-first language explicitly advocated for — but this too posed issues. Friends would often remark, “I don’t see your disability,” “I always forget you have a disability,” or “to me, you’re just a person.”

But of course, although well-intended, these statements were completely ridiculous. Unless you are blind or have low vision (which no one who made the statement was), you most definitely see my disability. I use a big power wheelchair — you can’t miss it. As for forgetting my disability, I’m fairly certain that was equally untrue. And finally, obviously, I’m a person — were you worried I thought you saw me as an alien or monster?

It’s not that my friends intended to hurt me. I get it — they just didn’t know exactly what to do or say, and were trying to do right by the person-first ideology being espoused at the time. But, by saying they didn’t see my disability or that they forgot I had one, they were inadvertently making it a big deal.

By saying they didn’t see my disability or that they forgot I had one, my friends were inadvertently making it a big deal.

Whether someone was calling me “differently abled,” emphasizing the importance of person-first language, or somehow “forgetting” I had a disability, the underlying message was always the same: Disability is a negative trait that’s best left unrecognized. And if you live the first 20 or so years of your life surrounded by people who unintentionally see disability as something negative, you start to believe that, too.

In fact, it wasn’t until I graduated law school and started working in the disability rights field that my perception of disability truly evolved. It’s not that I ever thought my disability was necessarily bad. However, I did see it as something I needed to overcome. I knew everyone had different things they had to struggle with — and having a disability was my challenge.

In the disability rights community, though, I was surrounded by people who didn’t see their disability as a tragedy or something to be ashamed of. Instead, they saw their disability as an important part of who they are. Moreover, they welcomed the use of identity-first language, believing their disability is a positive trait that should be acknowledged as such.

Ten years ago, I fully embraced my identity as a disabled woman — and not just as a disabled woman, but as a proud disabled woman. Having a disability has made me who I am today, and that is something I am truly grateful for. In fact, I strongly believe that my life is greater because I am disabled. The opportunities I have had and the people I have met because I am disabled have greatly enriched my life.

I strongly believe that my life is greater because I am disabled.

Having a disability has informed my life’s work. I attended law school with the intent of working in the field of disability rights. I am now completing my PhD, focusing on research and social policy. I believe my disability and the experiences I have had because of it make me better at my work. I am sure I wouldn’t have gone into this field had I not been disabled, and I am thankful that I’m here.

Now, I’ll be the first to admit, having a disability isn’t always easy. At times, it can be downright awful. I have encountered blatant discrimination by employers, health-care professionals, retail staff, and complete strangers. My wheelchair has broken at the most inconvenient times — once I missed nearly two weeks of work, waiting for my wheelchair to get fixed. I have had personal care assistants not show up, leaving me stranded in bed or in other compromising situations.

Nevertheless, I wouldn’t change having a disability for the world. Facing challenges as a disabled woman has only made me stronger and more resilient.

Most of the struggles the disability community encounters are a result of society, not a person’s disability. If buildings were universally designed, we could go anywhere we wanted. If personal care assistant services were improved and workers paid more, it would be much easier to hire reliable staff. If wheelchair repair companies didn’t have to jump through a million hoops imposed by insurance companies, it wouldn’t take weeks to get things fixed. And, most importantly, if people would become more tolerant of people’s differences and actually embrace the diversity of our country, discrimination would no longer be a problem.

Most of the struggles the disability community encounters are a result of society, not a person’s disability.

I have many identities that are important to me. I am a woman, daughter, aunt, partner, feminist, and advocate. I’m also a disabled person. Each of these identities make up who I am. I wouldn’t say “I am a person with woman,” so why should I say “I am a person with a disability?”

Whether one uses person-first language or identity first-language is a personal choice, and I fully respect that. I just hope that as perceptions of disability continue to evolve, disability will no longer be viewed as something tragic.

I truly wish I didn’t waste the first 20 years of my life trying to separate myself from my disability. Finally, I have the words I’ve always been meant to say: I am a proud disabled woman