Since Monday, I have been thinking about the meaning of an often-heard phrase in the disability community, and from people who interact with the disability community:
What do people mean when they say, "My disability doesn't define me"? Or, from another perspective, “He / she doesn't let disability define him / her”? What do we mean by "define"? What negative experiences and feelings do we think we are avoiding by not being "defined" by our disabilities? Is it mainly that we don't like being labeled, or is there more to it than that?
I invited people to share their thoughts on these questions, and two people commented:
The Wheel Deal:
"What does a definition do? It explains what a word is. If someone were to explain who I am, give a definition of me, my disability would only be part of it. A disability does not make a person, they are much more than what they "have" and how they get around. As a disabled person I do not let my disability define me. To me that means that I am more than just someone who happens to use a wheelchair to get around. When I meet someone new our "get to know you" conversation doesn't center around my medical history. My life and thoughts do not revolve around being disabled. Being disabled is part of me, I fully acknowledge that, but it's not all of me.”
Debra Buell:
"My problem with the words we use to talk about anyone, disabled or able bodied is that they are the perception of others who may or may not have an appreciation for the full human being. You've said it here, Andrew, when people talk to us, we have interests beyond our disabilities to share. Sometimes people have a hard time getting past whatever the body barrier is that exists. I actually think that very attractive people have some issues in this area. People are awed enough to keep themselves distant. People with tattoos scare some people. In the case of disabilities, people may feel awkward or scared and they keep distant. To be able to have a full sense of who I am, you have to be brave enough to dare to approach me and then look me in the eyes, not focusing on my wheelchair.”
Both of these comments point to the frustration and pain of feeling as though non-disabled people see us and just think, “disabled”, and move on, as if they already know everything that’s important about us. Underlying this is also a practical concern, that if people never bother to see us in three-dimensions, then we will lose out on more than just friendly small-talk … we will be disadvantaged in job opportunities, friendships, and relationships.
So, when we as people with disabilities say we don’t want to be defined by our disabilities, it seems clear that what we mean is that we want people to see all of us, including, but not restricted to our disabilities.
I think it’s different, though, when non-disabled people, either directly or indirectly … like in new stories … say that we are not defined by our disabilities. I think in these situations, it means:
You are successful and independent, not stagnant or dependent on other people or support systems.
You look and act “normal”, even though your disability is also obvious. Your appearance and personality are familiar and appealing, while your disability quickly seems like just an add-on.
You rarely seem to need help. You seem to have your situation well in hand, and you never seem to be stuck or helpless.
You don’t complain much or get upset about your difficulties.
You have a positive attitude. You are ambitious and always willing to try. You don’t use your disability as a crutch or excuse.
Do these thoughts sound familiar? It's as though "not letting disability define us" is a stamp of approval. We're doing disability right!
The problem is that almost nobody with any kind of disability truly fits these descriptions. Even the most successful and independent among us rely on some adaptive tools, techniques, or supports from others. Some of us look different enough that no amount of positive attitude can overcome peoples’ initial awkwardness on meeting us. We all run into physical and attitudinal barriers that can wear on our patience, and place real external limits on the things we want to do. We all have legitimate reasons to complain, and complaining can sometimes be productive. Finally, it is hard for a non-disabled observer to tell who has ‘given up” out of malaise or laziness, and who is genuinely stymied by complicated, intractable problems that one person alone can’t sort out.
None of these things necessarily mean we are “defined by” our disabilities or have “let our disabilities define us”.
“He doesn’t let his disability define him” presumes a kind of disability ideal that few if any of us can ever live up to. Nor should we perhaps if that ideal is imposed on us from the outside by people who only vaguely know what it takes to function in a practical way with disabilities.
I think that’s the key. It’s one thing for us to say that we don’t want others to define us by our disabilities. Of course we don’t want to be reduced to one attribute. It’s another thing entirely when other people say we haven’t let our disabilities define us, when what they mean is that we fit their idea of what makes a disabled person admirable.
So it’s okay if the first thing someone notices is my disability. That’s only natural. It’s also fine when they find out that disability is an interest of mine … that I also choose to think about disability issues. That’s another way that disability defines me. My disabilities do partially define me, they are part of who I am. I am also defined by dozens of other likes, dislikes, aptitudes, interests … not to mention race, gender, ethnic background, education, family, geographical region, etc.
Ultimately, saying that I or someone else with a disability isn’t “defined by disability” feels like running away from something, or trying to hide something shameful. That’s why the phrase bothers me. Yet, I also need to remember the other meaning ... that we don’t want to be seen as nothing but disabilities. Nobody wants to be simplified into an icon.
More comments from Tumblr:
"... Lets try that again and change the words around
Ex. “I’m a girl but I don’t let that define me! I like video games and sports. I don’t wear makeup and dress in casual clothes. I don’t diet or obsess about my appearance. I’m just one of the guys!”
And more from Posts and Mirrors:
" ... There are parts of me that my disability has less to do with, but it’s such a pervasive part of my life that it touches on basically everything. I don’t get the option of ‘rising above’ or ‘conquering’ my disability, and I don’t prefer to spend my life unhappy about that fact. There are times I still rail against it, but mostly I work at learning how to accept the definition that is unavoidable and how to work with that to have the life I want."
