Living in the grey area

When people talk about the "isms" in society, racism and sexism are usually the first that come to mind. Later in the list comes agism. Often forgotten and misunderstood, is ableism. 

Ableism: Discrimination in favor of able-bodied people. 

In the last 9 months of my life, I have thought a lot about ableism. A year ago, when I whole-heartedly identified myself as "able-bodied," I never even considered the nuanced meanings of "disabled" or "abled." I assumed that, like the other "isms" I've learned about or experienced, the categories were cut and dry. You were either "able-bodied" or you were "disabled." I never imagined that I would one day live in the hell that is the grey area. 

On my worst days, I am undeniably disabled. I am in bed or, if I must go out, I'm in the wheelchair. On my best days, I am walking on my own and participating in society like an able-bodied 20 year old. That lasts for about 6 hours, then I crash. 
On most days, I am somewhere in between. I wake up feeling achy and tired so I take my medication and monitor my stats. I drink a bottle of water and I monitor my stats again. I concentrate on my breathing when I have to take the stairs. I position myself away from sharp edges in a room to ensure that a surprise syncope episode won't result in cuts and bruises. I stand up slowly and brace myself against furniture or people around me, and sometimes I have to sit right back down and try again. That is the grey area. I can walk and stand on my own, sometimes. I need a wheelchair or help from my loved ones, sometimes.  

This is how I discovered the ableism that is hidden in disability binarism. Disability binarism is the idea that disability is black and white; you are either able-bodied or disabled. This simplistic thought processes is damaging to anyone who finds themselves in the grey area of disability, which is a huge portion of the disabled community. 

Disability binarism leads able-bodied people to dismiss the experiences of disabled people if they see any evidence of ability. For example, this oh-so-funny meme that circulated the internet:

Disability binarism leads to uninformed assumptions about other people's bodies and experiences. This meme is highlighting the idea that there must be a miracle for a disabled person to be able to perform a task that an able-bodied person can. The humor is in "catching" a disabled person slipping out of character. There is no concern for understanding in this situation. The idea that this person may use the wheelchair to avoid falling when overcome with syncope or to function with severe fatigue is foreign to the viewer because all they understand is disability binarism. 

I have found that disability binarism is one of the biggest driving factors for the ableism that I have experienced. I think that this is because I was once very able-bodied and I have transitioned into a period of my life where I am now in the grey area. Those around me, weren't always part of the transition so they do not understand my life in the grey area. 

I use my chair a lot on my campus because it is the safer method of transportation. However, it uses a lot of energy to push myself so when I can, I park my chair and I walk on my own. Seeing me in the chair one minute and then walking the next has confused a lot of people. I have heard everything from "I swear I see you in a wheelchair sometimes. What's wrong with you?" to "Wow. I thought you really were crippled. You know, you shouldn't pretend to need a wheelchair." 

Neither of these comments are okay. Although your questions might seem like innocent curiosity, there is a major aggression/accusation in the question "What's wrong with you?" Let me set something straight here, you are not entitled to know how I became disabled. My appearance of a disability and then ability to function normally is not some mystery that you are entitled to solve. Everybody has their emotional baggage that they must deal with, mine, unfortunately, is on display and satisfying your curiosity at the expense of my comfort is not my responsibility. 

Finally, let's take a minute to realized that somewhere at some point, someone watched a disabled person stand up and reach for something in a store and, instead of politely offering assistance or just going on with their happy disability-free life, took a picture and made a joke out of it. That is the definition of ableism: witnessing a moment from a disabled person's day, taking ownership of it, and turning it into entitled entertainment for yourself. 

Living with any disability is hard. Living in the grey area is hard. You would think that having good days and performing tasks like an able-bodied person would count as joyful successes for those of us living in the grey area but because of the attitudes encompassed in disability binarism, these successes are tainted with the fear that uninformed bystanders will use them to dismiss the severity of our disability. If you see me walk today, will you doubt my need for my wheelchair tomorrow?