Recently, the online disability community has been discussing ableism and whether we should let disability define us. On the one side, some people say “I am more then my disability. I don’t let it define me.” On the other side, there are those who believe we should “Let disability define us. Be proud. It’s part of our identities, we can’t ignore it.” So which answer is right? Is there a right answer?
It’s been my experience that society tries to define me by my disability. People see me and make certain assumptions, most of which are false. They may assume I am not intelligent. They may assume I’m poor. They may assume I am uneducated or unemployed. They may assume I’m frequently ill or not able to get out of the house much. They may assume I’m worthy of admiration simply because I’m doing an everyday task like shopping at the grocery store. When they learn things about me that challenge their assumptions, they may react with doubt, or hostility, or undue enthusiasm.
For all those reasons and more, I’ve always been hesitant to let disability define me. I have deliberately made choices that set me apart from what is assumed, typical, or expected for people with my disability, or any disability. I worked extra hard to succeed in college and grad school to prove my intelligence and employability, and moved far away from my family for many years. I have a part-time job, and also operate my own business. I live an active life, travel often, and don’t take no for an answer when someone without a disability would have been told yes.
I initially chose a career that had nothing to do with my disability. I encountered lots of employment discrimination, but finally found a great job in my field of interest. I was living a fun life in Southern California, and thinking about my disability as little as possible. But that’s when things started to get complicated. My disability couldn’t be ignored. I was still experiencing discrimination, having problems finding good caregivers, and struggling with my self-esteem. But more than that, I felt a nagging emptiness, like I was missing out on something I was supposed to do. I loved my job, but it wasn’t enough. I felt called to help people in the same ways that I have been helped. I believed I had a responsibility to use my voice to advocate, and be a role model to others who might not know what is possible for people with disabilities.
My life took a different direction as a result of those new goals. I was thrown a few curveballs along the way, but it ultimately led me to where I am now. I have four major jobs or projects that are important to me. Two relate to my disability, and two do not. That’s a good reflection of how I see my disability and its place in my life. I am proud to be a disabled person. I feel a solidarity with the disability community in general, and supporting others with disabilities is an important part of my life. But I have other interests, too. I don’t let my disability define me. I define myself.
I believe we all should have the right to define our disabilities for ourselves, and in relation to the other parts of ourselves. We should be able to choose how much our disability defines us, whether it guides our life path or is a small portion of our identity. We should not let other people, whether or not they have disabilities, tell us how we should feel about our disabilities or what place they should hold in our lives. Society tries to define us, but we don’t have to accept its definitions. Let’s reclaim the narrative.