The other day, I shared an excerpt from The examined life, touching on issues surrounding disability and society. Today, I would like to share some of my thoughts on the subject. We tend to conflate disability with a medical condition that impedes someone’s ability to function normally in our society. That is part of what is at issue, but there is a mistake in just looking at it like that. There are a few different components that we should look at here:
- The Medical Component
- The Psychological Component
- The Social Component
- The Institutional Component
Before I get on some more specifics on these aspects however, I would like to lay out a bit of a disclaimer. I can only speak about these things from my personal perspective, and I do not want people to think that I am speaking for all people with disabilities. I only want to give the people who read this some things to think about, I think there are many in the disabled community who would rather not vocalize these kinds of things because they would be seen as complaining. While others, I am sure if they had the ability to say these things they would. In addition, I cannot really speak to the experience of people with cognitive impairments, as I have not experienced much of this myself. With that said let us move onward!
The Medical Component
All of these are a bit tricky to talk about, but this one in my opinion is a bit trickier than the rest, which is why I chose to tackle it first. Let’s face it, if any of you know anyone with a physical disability then it’s very easy to see that they have better days than others. The physical ability to function varies sometimes widely from day-to-day, some even one hour to the next. Personally, I like to call these “gimpy days.” This is how I refer to days where it is unusually difficult for me to do things that I would normally do on an everyday basis. These things can include getting in and out of my chair, going to the bathroom, speech is sometimes a little more difficult, my ability to tie my shoes etc. we all need to understand our limitations. In addition, for disabled people, sometimes those limitations can vary more frequently than the average bear. Keep this in mind.
There is a second component to the medical side of things I would like to discuss briefly. There is a tendency in our society to look at people with disabilities as patients who need to be treated and/or fixed. It is as if the things that we can observe are the only things that the person has to contend with on an everyday basis. When I was growing up in the mid-80s and the 90s, it was often the social conditions in which I found myself, and not the ones most closely associated with my medical condition that were most difficult. We have to remember to treat someone as more than a diagnosis; we have to treat the entire person. This means that more emphasis needs to be placed on creating a support team to help disabled children better deal with things like social misunderstandings, and instill the concept of self-advocacy.
I grew up with very loving, well-meaning people in my life. But they could not have seen how their well-intentioned words of encouragement may have influenced me in a very negative way. My grandfather is one of the smartest people I will ever have the pleasure of knowing, he taught me many things about personal fortitude, and about pursuing one’s interests to their logical conclusion and finding fulfillment in them. He taught me how to write essays beyond my grade level, among other things. One thing that he always used to say to me was “your body may be broken, it may not work like the others, but you will always have your mind… And that is exceptional.” This is a very well intended sentiment, and for the most part, I took it well. I have a pretty well developed intellect, and I can keep pace with graduate students on most topics even though I only have an Associate’s degree. However, one of the ways that this turned on me happened later in life, when I shifted focus intellectually and was no longer pursuing a subject that my family saw as valuable. I began to wonder, “If my intellectual pursuit has no value, and all I have is my mind, then who am I?” My first inclination was to say, “What am I?” There was no acknowledgment of my physical desires as a human being, my need for physical companionship and physical activity were always looked at as secondary attributes unless they were part of a regimented physical therapy program. This left me feeling as though I was not an entirely integrated human being.
This one is easily tied to the other two: people are going to look at you funny if you are different. However, in this instance, I am reminded of the first time I ever tried to ask a girl out on a date, and her reply was “Ew! you’re in a wheelchair.” that’s all I’ll say about this one for now, because I’m going to talk a little bit about it more toward the end of this piece.
It is no secret in this country that disabled people have the highest percentage of unemployment. 70% of disabled persons are unemployed. This scares me. I know there are exceptions to this rule, but having the odds stacked that staunchly against me, it would be enough to petrify anyone. It does not help that in my experience, the vast majority of interviewers that I come across typically assume that because I am in a wheelchair, I am somehow otherwise deficient and incapable of even performing even the most menial tasks in an office. That is okay, I fucking hate offices anyway. Moreover, I know that the state and federal governments are the largest employers of disabled persons, and back when being a state or federal employee actually meant job security that may have been a good thing. However, many people I know that were in government jobs are not exactly what I would call fulfilled, and by the time they retire, they are completely burned out. But when you can’t even guarantee job security, is it really worth it? This brings me to another point: Social Security. It is a system designed with the intention of giving those in need a helping hand until such time that they are able to find gainful employment. But with a 70% unemployment rate among disabled Americans, many persons with disabilities end up simply living off the system, the system that is said to be running out of money very quickly. Most people would suggest that someone in such a position should save a portion of the money. This is next to impossible, if one accumulates a certain amount of money and assets, Social Security will in fact either reduce or halt your benefits, and for many of us that also includes medical and dental benefits, which makes finding suitable employment even more difficult.
Another thing about the institutional aspect of disability has to do with education. There is simply not enough disabled education in America today. I mean that both in terms of having options for persons with disabilities (i.e. access to adequate facilities, reasonable accommodations academically and professionally, the ever present physical barriers) and I mean that in terms of a lack of education about disability in American schools. For those of us who are able, we are allowed to participate in regular classes without much intervention from special Ed. However, this presents a new kind of problem, because we are left to try to learn how to socialize with able-bodied people who have no idea how to deal with us, and this is a problem. Very few people know what cerebral palsy is, muscular dystrophy, osteogenesis imperfecta, spina bifida and so forth. Nobody’s having the important conversations to find out what people need from each other in the classroom. Therefore, this attitude is carried into the workplace, where people simply politely attempt to hide their reservations and insecurities about working alongside persons with disabilities. There is still a social barrier present. And it needs to begin to be broken down.
What does this have to do with my work regarding sexuality and disability? A better question would be how is it not related? Think about it this way: Sex is one of the ways in which human beings solidify social attachments to one another. Mate selection ensures genetic propagation. This is basic evolutionary biology here, but here’s where it gets tricky. Back when we were hunters, having a physical defect or a mental defect (now reframed rightly as difference) pretty much ensured that you were dead. So, people cared for you until they could no longer do so, and you passed away. There’s a problem here. That’s not important anymore, but we’re still treating it like it is. It doesn’t matter how successful someone in a wheelchair is, they’re still going to be looked at as overall less capable than their able-bodied counterpart. And if you’re looked at as being less capable, you’re less likely to be chosen as a sexual partner, which means lack of pair bonding opportunities… This can lead to a lack of perceived intimacy, which can lead to depression and poor self-esteem… You get the picture. That is all I have to say for now, I hope you contemplate that gimpy love.