It might seem strange, but I went a long time without identifying as disabled. Let me start from the beginning. I got diagnosed with Arthritis in 2006, my hip was permanently damaged in 2007, and I got a diagnosis for Crohn’s in 2008. Those dates of course suggest nothing of the pain and hardship that I went through getting the diagnoses and living with the various illnesses and impairments.
When I first started getting sick, my end goal was to get better. It was to get back to what life used to be like before I got sick. I always looked at everything that was wrong with me and kept thinking “someday I won’t be like this. Someday I will be normal”. I spent the next few years after that working on achieving just that. I would try various medications, go to various appointments with my doctor ready to discuss how to make my symptoms stop all together. I don’t know at what point I realized that I would never “get better”. It didn’t necessarily come as some giant revelation. At some point I realized that I was no longer going into things hoping “this will cure me” but instead was thinking “this will make my symptoms less severe”.
Even after I realized that there was no “getting better” for me, I still resisted the impulse to consider myself “disabled”. I don’t know how often I would catch myself saying things along the lines of “Oh I have a disability yes, but you know… I’m not disabled.” There was more to it than just wanting to believe that I could get better someday. I was afraid that people would judge me, but beyond that I also felt like people wouldn’t believe me.
There are two sides to the label “Disabled”.
We as a society have a very specific concept of what disability means. Anyone who falls outside those definitions must be faking it. If you are a person in a wheelchair, you better be using it because you cannot walk at all. You are not allowed to use a wheelchair if you only can’t walk sometimes, or it if hurts to walk, or anything else. If you are blind and use a white cane, you better be completely blind. Our society has this concept of disability as all or nothing.
It creates a binary: Disabled and Not Disabled, with one side being heavily defined and anyone who doesn’t confirm 100% is faking it and taking advantage of the system. The problem of course with this assertion, as with any binary really, is that it is not a complete or even accurate picture of the world.
Many people with disabilities have fluctuating symptoms. In my case for example, most days I can walk unaided. I might limp from time to time, but otherwise I am ok. However, on other days I might require the use of a cane. On other days, the pain might get bad enough that I require the use of a wheelchair to get around. This doesn’t make my disability “not real”, nor does it mean I am faking it when I am in a wheelchair. Many of my other impairments are also not visible to most people. When I go to the washroom three times in the space of an hour, that is me acting out my disability as much as when I am throwing up in public or the times when I don’t make it to the washroom in time. When my abdominal pain makes it impossible for me to concentrate, that is a manifestation of my disability.
What this binary does is make it more difficult for people who need services to access them, but it also makes it easier for the populations in power to ignore us. If the only people who count as being disabled are those with easy to identify symptoms, then they can pretend that accessibility is not as big an issue or requirement as it is. (Though frankly even if the only people who were disabled were those with obvious and identifiable disabilities, accessibility would still be an important consideration.)
So on the one hand you have people with legitimate disabilities feeling like they are not entitled to consider themselves disabled. But there is another side to the fear of identifying as disabled.
We as a society have this concept that people with disabilities, especially those receiving disability assistance are lazy, sad, and pathetic. That they are deserving of pity. There is an underlying current of society that holds the belief that the words “I am disabled” actually mean “my life is not worth living”. In a culture that prioritizes what any given person can do, how productive they are, it is not surprising that this is the case. Our worth is dictated by how useful we are, and people with disabilities are assumed to be useless to society as a whole.
There is active pressure from society to not identify as disabled, pressure to consider “being disabled” a bad thing. It is this same impulse that leads friends and family to say such patronizing things as “The only disability is a bad attitude” or “You’re not sick, you just need to think positive.” They cannot understand why we would do something so “negative” like be disabled or worse yet, talk about being disabled. For me finally admitting to myself and eventually the world that “yes, I am disabled” was incredibly liberating.