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On Identifying as Disabled

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.

 

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Ania Onion Bula

Ania Onion Bula

A student of biomedical sciences, psychology, and English literature. Ania was diagnosed with Psoriatic Arthritis in 2006 which resulted in permanent damage to her hips. In 2008 she was also diagnosed with Crohn's disease, along with anxiety, ADHD, and disability related depression later on. She is finishing up a book called Young, Sick, and Invisible: A Skeptic's Journey with Chronic Illness.

Along with writing, Ania also makes her living by selling her Art under the store name AniaOnion Creations on Etsy. She spends her free time reading, and spending time with her dog, two cats, and three turtles, oh, and her Alex.

2 Comments

  1. July 11, 2014 at 8:01 pm —

    After 25 years with an invisible illness, I can relate to your story. I had to learn that there are some things I just can’t do. By accepting that I’m “disabled,” I’m free to focus on what I CAN do, and free from shame about what I’m not able to do.

  2. July 21, 2014 at 11:29 am —

    Thanks for your excellent depiction of the situation many of us, particularly those of us with “invisible” disabilities face. I also went through a period of not considering myself “disabled”. After all, I just had “asthma”…though apparently adult-onset NON-allergic asthma in adult women often turns into a severe, persistent and chronic situation…as did mine. I finally, after a long struggle, succeeded in getting on Social Security Disability. And, of course, I “look good”, so it’s hard to comprehend to most people what I go through. But wait, there’s more. In late 2012, hip pain led to a diagnosis of avascular necrosis (likely from years of prednisone use to dampen down my frequent and prolonged lung exacerbations) and to a hip replacement and later revision of the same replacement. So now I have a cane and over the last several years my lower back pain has become chronic with walking and standing….an MRI revealed I have substantial osteo-arthritis and degenerative disc disease. I also have osteoporosis (earlier than normal, likely from the prednisone), sleep apnea, chronic insomnia, high blood pressure and a one time seizure. With the orthopedic issues, I now use a cane and am contemplating a seated walker…mainly so I can sit and ease the back pain that comes with even modest amounts of standing and walking. No decision yet. Nowadays I realize there are no “cures” for any of the chronic stuff I have….just more and more treatments and rest to whack down the flare-ups. However, it is difficult for people who have not experienced the wonderful world of chronic medical conditions to understand that we can have good days, bad days and days that start out good and become bad…there are days I nebulize multiple times and days none at all, for example. On days with little activity, the pain is minimal. But, if I have an “active” day (which for me is walking slowly and perhaps standing and looking at stuff), the pain shoots way up. So, I continue to “accept and adapt”.

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