I thought a lot about how to frame this post. Usually, people are used to me talking about all of the positive elements I have experienced working in disability activism. However, there is a reality to disability, especially something like the progressive muscle disease I have, where as an activist, I must find a balance between reality with a progressive disability and fighting for the rights and equality of people like me, by stressing how similar we are to everyone else.
It’s true. We are just like every other human being, in that we experience the same kind of emotions. We often want the same things every other kid or teenager wants. At the same time, we simply cannot ignore the fact that we live in a society where having a disability or severe/chronic illness is not an easy lot in life. I have written a lot about this being due to the fact that the world is wholly inaccessible. I have absolutely no doubt that our lives would be much easier, if the world were a more accessible place.
Truthfully, I spent a lot of time in and out of the hospital or doctor’s clinics, mostly outpatient, when I was growing up. There is absolutely nothing glamorous about living life going to and from the hospital or even living in the hospital. On top of my Spinal Muscular Atrophy, I have severe asthma. I spent a lot of time, during my formative years, being ushered to and from the hospital, hanging out in waiting rooms, and being placed inside machines so big, you couldn’t even see my tiny self inside.
One of my biggest complaints about depictions of people with disabilities, in the media, is that they are inaccurate depictions. Sure, everyone has a different experience, but, on the whole, I have never heard stories of people hooking up while waiting to get treatment for whatever requires them to be at the hospital, in the first place. Often, these are depictions written by able-bodied, non-ill individuals. This isn’t the view of a person with a disability or chronic illness who is telling their personal story. It is the way the able-bodied person or not ill person thinks we think, feel, or react.
What this ends up being is a story that is not about the person with the disability or a person with the chronic or severe illness. It is about the audience dealing with their own mortality. Nothing emphasizes this more than a recent post I read on “sick lit” – a term that has been used to coin this growing genre. It is about the able-bodied individual dealing with their feelings. At best, it is exploitative. At worst, it borders on the kind of disturbing obsession we see towards people with disabilities. These people are what we refer to as devotees.
The Red Band Society is the same kind of fodder. Not only does it play into all of the tropes about disability and illness that many of us in the disability activism community have been attempting to eradicate, or at least educate others about, so they can help us eradicate it, but it also plays into the ” black hero(ine)” trope. This trope explores the idea that a nonwhite person, typically someone who is black, basically serves as a person who sees to the needs of the primarily white, (rest of the) cast of characters. In this case, Octavia Spencer, as the nurse to this wily group of kids, plays the hero role. We often see Denzel Washington playing these kinds of roles, where the character is desexualized, and has little else going on for them beyond serving the needs of the white folk, in the film or television show. Why do we relegate black people to take care of or do the bidding of primarily white people? It’s just not cool. I digress.
For many people with chronic illnesses, this kind of exploitation is disturbing. For me, it is a reminder of the fish bowl syndrome, many of us who spend a significant amount time at the hospital experience. With each new doctor that comes in, we are poked and prodded. We are made to perform, so the new doctor can see the most visible of our symptoms. We are in a fish bowl, on display,for the able-bodied world to see, to gawk, to stare, and to marvel in wonderment. We are not yours, to put on display. Our stories are not yours to exploit. Often, what happens, is that allows able-bodied people to ultimately feel better about themselves and their own situations, because at least they don’t have it as bad as we do, or at least that is what they think.
We need to stop our fascination with lives we think we understand. Instead of able-bodied or non-sick individuals writing what they think our experiences are, maybe they should consult with us or let us write our experiences, in our own words.