I'm Not An Inspiration, But I Am Your Shadow: Thoughts on Disability
This all makes me feel really alone lately. I emailed an older friend and activist about my art opening in November, and he emailed back to say that he was glad I was doing better, that I was healthier now, etc. I had said no such thing. I was quite sick at the time, but he equated being healthy with accomplishment. Because I had managed to have an art opening, a truly huge feat for me, I was therefore healthier.
I was friendly and on my feet at the art opening, but I suffered for about a month afterward with increased pain and fatigue. Many people saw me at the opening, but only my roommates, my partner, and my parents saw me during the month that followed: A month in which I bleakly and passively considered suicide in the face of a life that did not seem worthwhile.
Likewise, when I visited someone at their home, it used to use up all my energy sometimes for a whole week-- but I could do it and look fine doing it. I hid my symptoms from people because they didn't give me signs of support, nor indicate that they really believed me. I strove to keep up with an able-bodied standard of being, of interacting, of living. And I paid, privately and for long periods of time.
Able folks complain a lot about minor illnesses and this works against me. It's the reason why I have to tell people I have an illness over and over again. They think I'm just exaggerating and complaining like everybody does. I don't exaggerate when I talk about illness, because there's little room for exaggeration. I tend to underreport it because I simply don't know how to do it justice without it looking like I simply want attention. I was also undiagnosed for many years and this worked against me a lot too-- people take things seriously when they have good scientific names on them. When you just have chronic fatigue and pain, they wonder if you're either "just depressed" (which is not taken seriously-- again, due to ableism against people with mental illnesses) or faking.
Folks compare my illness to their own temporary and mild illness or infection, and this sucks a lot too. I used to be healthier but I got sick sometimes too, then. So trust me when I say: It's different when you're chronically ill. You have to face years of impairment. You lose touch with your dreams. You get cut out of the economy. You change. You have to face the possibility that many of your hopes not only will not come true, but cannot come true.
Magical Disabled InspirationsPeople hear about disabled people in a very weird context. I grew up seeing "inspirational" disability. People who completed marathons, did paralymics, started charities, painted with their toes. It was their can-do attitude that made it possible, apparently. The truth is that many disabled people who succeed have other things going for them, especially class privilege. Most disabled people live in poverty and are not featured in magazines (or memes). Most disabled people are not magical inspirations. Because everything is much harder, we fail more often to come up to the standard set by able people.
No one wants to hear this, but most of all not people who are fully able-bodied. We are their shadow. We represent the reality of life. They want to believe that anyone can do anything if they just try hard enough. Without that belief, life is too scary, the potential for hopelessness too real.
One of the worst things to hear is that I can do anything if I believe in myself, and things like that. I know many people are just trying to "help," and so I can't say much to them about it, but it's a flawed notion. Everyone understands that bodies have limitations. It shouldn't be so hard to understand that different bodies, including brains/minds, have different limitations from each other. Understanding and working with those-- working with them as a reality-- shouldn't be seen as a failure, or as "not believing in" oneself. But people often can't hear the truth because inspiration-speak is our cultural thing, from corporate training videos to internet memes to whole 'religious' movements.
I work with the limitations of my actual body -- respecting them, pushing them, taking care of myself, and that's not shameful. My body's limits may change and that's okay too. Its what we all do. It's why even able bodied people don't generally jump off buildings and try to fly because they "believe in themselves." Disabled bodies have different limitations. Some bodies can't fly, some bodies can't walk, some bodies can't talk. Some bodies hurt all the time and some need medication for their brains to work better and that's okay, that is reality.
|This dog cannot lift this barbell.|
People tell me I'm smart and so I can do anything. It is an insult and a slap in the face. I know, counterintuitive. But I know I'm smart. I know I'm capable. These facts make me ache every day. Because they do not create success. To have an able bodied person tell me I just need to believe in myself, or that I am too smart to be doing some basic job that I think I can actually do, is so isolating. Not everyone can do everything. Because we are not just disembodied minds or spirits, we are matter, and matter is vulnerable. People are truly vulnerable. After thousands of years of oppression visited on so many different groups, why people don't know this, I don't really know.
None of this is about negativity. It is about reality, and it is even about power and hope. It is simply necessary to recast achievement, power, and worthiness so that they are individual standards based on reality and flexibility, not social ones created only for able bodies and minds.
My body and mind are powerful. They are good, and they are mine. Their limits may be permeable and their true potential may be unknown. I may succeed wildly by standards that have not even been dreamed up yet-- maybe even by standards that no one will even recognize. I am, for better or for worse, an authority on myself, but there are things I do not know.
But just as people should not jump off of buildings and try to fly, people with disabilities should not be told to ignore their own limits, to push forth based on someone else's standard, an alien standard created for able bodies. Pushing limits can be great sometimes, but pushing limits without regard for reality is not wise for anyone, disabled or non. Icarus falls, the father's wings of wax do not hold.
Reality is not something to hide from. It's not something to cover up with inspirational sayings. It is where some of us live, and where we will all eventually end up. It is okay to face it, to look at people and situations in their entirety and say, "OK. I see this is how it is. It is this way right here, right now-- maybe not always, but definitely now. I will face it, shadow and all."