General Observations using Disability Studies

People with Disabilities and Sex Appeal

2007-02-16T19:09:00.000-08:00

It's been a while since my last post, but alas here I am again, and I wanted to talk about sex - figured it's as good a topic as any to restart things. I've been thinking about a quote I read online a bit ago by the poet Eli Clare, who is a poet who is transgender and who has cerebral palsy. He put ideas online from a key note speech he was set to deliver at the 2002 Queer and Disability Conference (here's the link to the writing in full: http://209.85.165.104/search?q=cache:xga-vSuYjt0J:www.disabilityhistory.org/dwa/queer/paper_clare.html+eli+clare+-+porn&hl=en&ct=clnk&cd=1&gl=us ). These comments in particular having been bouncing around inside my head: "I say it’s time for some queer disability erotica, time for an anthology of crip smut, queer style. Time for us to write, film, perform, read, talk porn. I’m serious. It’s time. I want to get hot and bothered: I want to read about wheelchairs and limps, hands that bend at odd angles and bodies that negotiate unchosen pain, about orgasms that aren’t necessarily about our genitals, about sex and pleasure stolen in nursing homes and back rooms where we’ve been abandoned, about bodily—and I mean to include the mind as part of the body—differences so plentiful they can’t be counted, about fucking that embraces all those differences. It’s time. I want to watch smut made by and for queer disabled people and our lovers, friends, allies, our experiences told from the inside out."

I'm heterosexual and tend to be more reserved on issues of sex, but, as mentioned, these words have stayed with me. I may not have put it so bluntly as Eli has - and good for him for being so blunt - but I agree with the message. I don't mean I think that making porn is the best way for people with disabilities to gain acceptance and feel more confidence. What I do mean to say is that Eli makes an excellent point that people with disabilities are rarely, if ever, thought of as sexual beings, people who have urges and lust and longings like all people do. Physical intimacy is the highest form of validation. We choose to be friends with all sorts of people, but we choose to be sexual (I'm talking consensual sex, not assault or prostitution) - whether long term relationships or one even night stands - only with those who we deem have appeal in some way. Very little of the time are people with disabilities portrayed as having legitimate sexual allure. This may be one reason that people with disabilities are often over-looked as romantic partners.

Being intimate and having companionship are among the most crucial elements of being human. People with chronic illness and disabilities have every right to expect these parts of life be a part of their experience. So, who knows? Perhaps Eli's approach is right, maybe when people can be hot and bothered by watching people with disabilities on film or in print, then all people, able-bodied and disabled alike will be more open and more drawn to all people, not just people whose bodies are working (for the moment.) If that's the result, I'm right there with Eli. My main hope and argument here is for people with disabilities and chronic illness to be taken seriously as seductive and sexual and worth a meaningful, long lasting intimate relationship.

"Normal"

2005-06-20T09:19:00.000-07:00

Sometimes the phrase can be heard, "She's pretty normal, whatever that means." It's more the second part of the sentence that I'll be focusing on this post.

The word "normal" is often applied to the body / mind of people. Another question, in particular in conjunction with a man or woman who is struggling to find a mate, is, "Why can't I just find somebody who's normal?" The answer to that question may be the seeker is focusing too much on the body / mind for attraction, rather than the qualities of a mate. If people search for a "normal" body to have or be connected to in a relationship, they'll be disappointed much of the time. As has been discussed before on this blog - even if a person's body / mind starts off "normal," it doesn't mean it will stay that way. Anything can happen to any one at any moment; for instance, look at Christopher Reeve. If it had been the body his wife was solely wedded to, the years of their marriage post-injurty would not have been as helpful and supportive.

What's interesting to note is that the word normal has applied to the body for only the last 150 years. This information is according to Lennard Davis' article "Crips Strike Back: The Rise of Disability Studies" from the fall 1999 edition of American Literary History journal. 150 years in human history is not a very long time. Davis explains the word normal began to be applied to the body in conjunction with the rise of statistics, census taking, psychology, eugenics, and the industrial revolution. All of these areas demand categorizing.

The other thing to take note of is that industry demands a high paced work schedule. A one armed farm worker has to work hard to adjust to his situation, but can, to a degree set his own pace; whereas, a one armed factory worker may have a harder time keeping up with the assembling line. Thus industry wants to make the one armed man feel excluded, and therefore society as it becomes statistically and industrially orienated deems people "normal" who can work tireless hours feeding industry interests. Those who can't then become shunned societally.

One other observation - I'm diabetic, so my pancreas doesn't work. I have a friend who has cerebral palsy, but his pancreas works. As defined by our bodies, which one of us is normal, then? Or is neither of us? Or my pancreas stopped working when I was 9 months old. A friend of mine got type 1 diabetes when he was 21 years old. Was he normal as a child, and I wasn't? And now he's not normal either?

In the end, then, the word "normal" is actually arbitrary. It depends on the time, setting, situation, and context as to what it means to be "normal," meaning, this word, especially as it applies to the body, will never have a fixed definition. A table most likely will be a table will be a table. But a "normal" body, truly who in the world knows what that means?

Good Advice From Chekhov

2005-06-18T20:40:00.000-07:00

Anton Chekhov is one of my favorite writers, and the quote I'm going to discuss this post is one of my favorite quotes from literature. It is taken from the short story, "Gooseberries." The passage is a challenge to those who feel more comfortable than perhaps they should. Chekhov grew up a peasant and most of his life he suffered from tuberculosis. The words in the paragraph below are spoken by the narrator, Ivan Ivanovitch, but clearly come from Chekhov's own experience, and are a prod for everyone to be vigilant and pay attention, especially to those who are marginalized.

"You look at life: the insolence and idleness of the strong, the ignorance and brutishness of the weak, incredible poverty all about us, overcrowding, degeneration, drunkenness, hypocrisy, lying. . . . Yet all is calm and stillness in the houses and in the streets; of the fifty thousand living in a town, there is not one who would cry out, who would give vent to his indignation aloud. We see the people going to market for provisions, eating by day, sleeping by night, talking their silly nonsense, getting married, growing old, serenely escorting their dead to the cemetery; but we do not see and we do not hear those who suffer, and what is terrible in life goes on somewhere behind the scenes. . . . Everything is quiet and peaceful, and nothing protests but mute statistics: so many people gone out of their minds, so many gallons of vodka drunk, so many children dead from malnutrition. . . . And this order of things is evidently necessary; evidently the happy man only feels at ease because the unhappy bear their burdens in silence, and without that silence happiness would be impossible. It's a case of general hypnotism. There ought to be behind the door of every happy, contented man some one standing with a hammer continually reminding him with a tap that there are unhappy people; that however happy he may be, life will show him her laws sooner or later, trouble will come for him -- disease, poverty, losses, and no one will see or hear, just as now he neither sees nor hears others. But there is no man with a hammer; the happy man lives at his ease, and trivial daily cares faintly agitate him like the wind in the aspen-tree -- and all goes well."

A large part of Disability Studies is the fact that most people are not born disabled but rather become disabled. That is why these words mean so much to me. In our modern culture those who are "healthy" often shy away or don't know how to respond to those who are ill. Often the "healthy" expect the sick to suffer in silence or to merely bite the bullet rather than complain so the "healthy" don't have to think about discomfort. The problem is the "healthy" become the sick, and then wonder why no one is paying attention to them, even though they had not paid attention to others when others were in need of a caring hand.

I know from my own experience that when I talk about diabetes often people nod, but then quickly want to move to another topic. But then if something happens, they say I never told them what was going on. As Chekhov says, "it's a case of general hypnotism."

To me, humans can never be content with themselves until they hear the man at the door with the little hammer, and answer the call and leave their homes to bring aid and comfort, not just to people of status and beauty, but to everyone.

Disability and Disability Image

2005-06-15T20:03:00.000-07:00

Our culture, as has been widely talked about, is quite consumed with image. One area this can be seen is how people with disabilities get treated. It's pretty common educational practice to teach kids not to "stare" at anyone who is physically different; yet, maybe that instruction is a part of the problem. Maybe instead of teaching children not to stare, parents should instruct their kids to talk to people who look physically different, thus getting to know them on a human, personal level. It might help with the divide in this country. At any rate, one area of image that is not talked about that often is the vast difference in how people who are seen as attractive who have disabilities are treated versus how those are treated who have disabilities and are also seen as physically different or unattractive.

A case in point would be the media coverage of Sean Elliot versus media coverage of Gary Coleman.

Sean Elliot was a basketball player for the San Antonio Spurs. He is tall, athletic, and good looking. During his career he came down with kidney failure, which required him to have a kidney transplant. Following the transplant, he played one more year of basketball, before retiring and becoming a TV basketball commentator. The media coverage was all about his courage and bravery; how nobly he'd acted, what a role model he had been.

Gary Coleman, on the other hand, is known for his TV situation comedy Different Strokes, which he starred on as a child. He is short due to kidney failure, which at various intervals has required him to have several transplants. Due to his small stature, during the TV series he was made to act younger and more childish than his actual age. Once the show ended, he has been lampooned and constantly made fun of, most of the time the humor has to do with his round face and his height - both of these situations are a result of his kidney failure.

The only difference then in how these men's ailments are viewed and how these two men are perceived has everything to do with how they look. Both are celebrities, both are African-American. The main central contrast is their height.

Apparently in America you are courageous and brave and a role model if you have a chronic problem, as long as you are pretty. If you have an ongoing illness but appear in any way different, then your ailment is made to look like buffoonery.

Boat Outing

2005-06-13T07:21:00.000-07:00

Over this past weekend, I went out on Cayuga Lake on a boat of some friends of mine. This outing was a bit of a surprise. I'd had plans to meet up with these friends, but until I called to confirm the plans I didn't know it was the plan to be out on the lake. They told me to meet them at 6:00, we'd grab some pizza, then go out on the boat.

Now all of this probably sounds easy enough; however, as a diabetic it becomes more complicated. Pizza is high in carbohydrates, which means it's a food that requires a lot of insulin to break it down. I'm fortunate in that four years ago I got an insulin pump, which allows a person to match carbs to insulin units, freeing up a person to eat, well, pretty much anything, and the pump permits a person to have more flexibility when he or she eats. If I'd still been on needles, this trip would have been that much tougher. With needles, one has to eat at pretty specified times, and what a person takes into his or her body is more limited, because the needle delivery system is less precise in how it covers foods, making high carbohydrate items much harder to handle.

Once we got out on the boat, I learned they were bringing an innertube with them that could be pulled behind the boat. Again, sounds like fun; but, now the pump was a problem. If I were on needles, I could have gone on the tube easily enough (as long as I had a sense of where my blood sugar levels were). The pump, though, is not water resistant. It was a hot day, and I wanted to cool down by getting wet, and the tube is fun, as well. After seeing my friends' kids get pulled around the lake, and the fun they were having, I really wanted to go. I finally decided I'd just remove the pump from my body and leave the pump on the boat, so I could get in the water and get pulled around on the tube.

Well, this presented another dilemma. I had to deliver (guessing) enough insulin to cover how long I'd be on the tube; not only that, but I had to guess how much insulin I needed to deliver in order to have enough insulin in my system until I could make it back home to re-install the pump (which takes about 10 - 15 ). I delivered two units of insulin, and hoped for the best. The remaining time, though, in the back of my head I was nervous as to if I'd over delivered, which could cause my sugar to drop, which can lead to nefarious things, like passing out.

Everything worked out. I had a good time on the tube, and made it back in time, and re-installed my pump, and then walked over to my friends' house to talk with them some more.

I write about this event for a couple of reasons. To show, hopefully, that with diabetes one never gets any times off. Even if a diabetic looks and sounds fine, most likely somewhere in the back of his/her head the person is thinking about the diabetes. The other reason I mention it is because I am fortunate these friends are very patient and understanding about my diabetes. They wanted to make sure I was ok, and after I removed the pump, they gave me a spin around the lake, but also made sure I got back home in time to get reconnected to the pump.

As I've written here before, people with chronic situations are just that - people, but people who have a lot on their mind, and even simple outings take planning and a step by step approach, and the ailment also becomes more tolerable with friends who include a person, making sure he or she feels openly accommodated and welcomed.

A Raymond Carver poem

2005-06-08T20:14:00.000-07:00

For this next post I’ll be commenting on a poem by one of my favorite writers, Raymond Carver. Carver is known more for his short stories, but he also wrote a lot of poetry, especially toward the end of his short life. (He died at the age of 49 due to lung cancer, which was brought on due to his chain smoking.) Below is a poem by him entitled, “What the Doctor Said.” It recounts a moment when the speaker (one can infer it’s Carver himself) learns cancer is spreading in his lungs and it is most likely terminal.

“What The Doctor Said”

He said it doesn't look good
he said it looks bad in fact real bad
he said I counted thirty-two of them on one lung before
I quit counting them
I said I'm glad I wouldn't want to know
about any more being there than that
he said are you a religious man do you kneel down
in forest groves and let yourself ask for help
when you come to a waterfall
mist blowing against your face and arms
do you stop and ask for understanding at those moments
I said not yet but I intend to start today
he said I'm real sorry he said
I wish I had some other kind of news to give you
I said Amen and he said something else
I didn't catch and not knowing what else to do
and not wanting him to have to repeat it
and me to have to fully digest it
I just looked at him
for a minute and he looked back it was then
I jumped up and shook hands with this man who'd just given me
something no one else on earth had ever given me
I may have even thanked him habit being so strong

- Raymond Carver

This poem captures well the awkwardness of having to face our mortality. As one who has been to many doctors, I can relate to the strange politeness between the doctor and the speaker (Carver). When getting bad news from a relative or a friend, we allow ourselves to emote, and maybe some do in front of their doctors. For myself, similar to Carver, I’ll usually be dazed at first, then polite, and simply thank them before leaving. What’s interesting to note is that neither the speaker nor the doctor want to mention the word death, even though that’s what’s at issue. In our culture of modern medicine many people talk about knowing they will die, but most people avoid thinking, talking, confronting, dealing with the issue in any substantive way. Thus the awkwardness – the rambling, evasive, non-punctuated – the hurried, confused tone of this piece. The piece does not even end with a period, implying a hopeful never-ending continuation, even though that can’t happen to any one of us. Still the poem, to me, is comforting. It deals with illness and death with realism, gentleness, humanity, consolation, and humor; and these qualities can go far toward making life, illness, even death, more acceptable.

Characters with disabilities on TV

2005-06-03T20:10:00.000-07:00

One of the main points about Disability Studies is to help society become more welcoming to all people, no matter what condition their body or mind is in. After all, most people don’t start off disabled; either an accident, an illness, some unforeseen event causes a person’s body to give out on him or her. People are born a man or a woman and cannot help their skin color, but whatever one’s background anyone can be affected by illness.

Since television is the broadest media outlet, it has a large impact on what people see as acceptable and what’s unacceptable. Some comments have been made recently that TV needs more people of color, and I certainly agree with this observation. Most shows present the viewing audience with the idea that everybody is white, attractive, and middle to upper middle class in lifestyle. Some strides have been made, in a show like Will and Grace, to have characters that are openly gay. As far as I’ve read and seen, no one with a large, public voice has commented on the lack of people with disabilities on TV. As a matter of fact, I can only think of one show, and I can’t remember the name of it because it was on in about the mid-eighties and had a short run, that had a main character that had a clear disability. This character worked in an office and was in a wheelchair. I recall one episode on of all shows the Love Boat that confronted the discomfort people sometimes feel when having to interact with people with a disability. In this episode, a woman was going to marry a man, who was then in his mid-twenties, who had had a skate boarding accident when he was fifteen which put him in a wheelchair. On the cruise, the bride to be’s parents meet the man for the first time. The father has concerns about her marrying a disabled person. But, of course, over the hour program, the father sees the error in his ways and there was a complete rapprochement by the end of that week’s episode. Of course one of the reason TV is so popular is because it aims to make the status quo feel as comfortable as possible.

It seems to me, however, that it’s time to have at least one series with a lot of public relations, big-time producers and directors behind it that has a main character with a disability. The show doesn’t need to be about disability, because for most people with disabilities the disability comes in second behind the everyday stresses of life, of paying the bills, friendships, dating, and making one’s way to a satisfying existence. The American with Disabilities Act, passed in 1990, was a start toward helping society become legally and ethically more fair toward all people. A further step needs to be taken. If people with disabilities are to truly be seen as just as complete and whole as other people, then the biggest medium in our culture, TV, needs to start including them into the fold.

Disability and my cat Claude

2005-05-31T19:57:00.000-07:00

As I mentioned in my initial post, I have type 1 diabetes. One of the side effects people know about is that people with diabetes can pass out due to an insulin reaction (meaning the diabetic has too much insulin in their system at that particular time). If a diabetic checks his / her blood sugar regularly and is cognizant of the physical warning signs, which diminish the longer one has diabetes, then hopefully severe reactions can be avoided. But, this particular illness means people have to use glucometers and needles or an insulin pump as a mechanical pancreas. And with all mechanics, even under the tightest watch, things break down. Well, a few years ago in the middle of the night, I woke up from a fitful sleep confused and lost and in a cold sweat. Having a vague sense that I was in the midst of a serious low, I straggled my way down stairs and opened the refrigerator. My blood sugar was so low, though, I didn’t know what I was looking for, and so just stared. My legs were wobbly and I was shaking. Eventually, I remember my hand hitting the counter top as I tried to grab it on my way to the floor. I lay on the floor feeling overwhelmed and uncertain as to what was going on. One of my family’s cats, Claude, came up to me and began to rub his head onto my face. This struck me as odd, as he was not an overly affectionate cat. He kept rubbing his head onto my face. I struggled up, and crawled my way back to the fridge, which was still open. I grabbed a ginger ale soda and drank it. I slowly began to become better aware of my surroundings. I then drank some orange juice. I was then aware enough to know where I was, and more importantly who I was. I closed the fridge and leaned next to the counter for a several minutes, before feeling well enough to go back upstairs. The thing that stays with me about this incident is Claude’s reaction. He clearly knew something was wrong, and responded with concern. It’s hard to know if this was simply Claude’s reaction or a general feline instinct to sense trouble and respond. I often wonder how much animals know and, like this situation, it does sometimes seem they have an emotional understanding of people. Certainly animals have similar instincts of power and territory and self-preservation. This occurrence has been a good lesson for me, though, that when something unexpected happens to a person, whether we know them or not, the best response we can give is often simply to be with the person and offer whatever relaxed, gentle pro-active assistance we have available to us.

Dinner with "Pete"

2005-05-27T11:55:00.000-07:00

Well, this post is more of a personal nature. On Wednesday evening, I got an unexpected call from a guy who I'll call "Pete." I know Pete from volunteer work I did a couple of years ago. Pete is in his early to mid fifties and he has trouble reading and writing. The two of us would meet once a week for an hour and a half and study the fundamentals of reading and writing. Part of the reason for his struggles, I'm sure, but was never diagnosed, is some form of learning disability. Another reason, which was medically diagnosed, came as a result of some chemicals he worked with while employed as a custodian. The chemicals did damage to parts of his brain. In actuality, Pete is a bright guy. About twenty years ago, even though at the time he was close to illiterate, he figured out the numbers to the stock market and invested and made a decent sum of money from his ventures. He also is quite gifted with his hands. He can build or repair just about anything. When we first met about three years ago, he told me that he got called stupid a lot. He said he'd had employers and even some teachers either state or imply that he was dumb. He said he signed up for the program, because he wanted to show those people they were wrong. By the time I'd met him, he'd used this agency's services for a few years, and his reading and writing had gone from close to illiterate to about a seventh or eight grade level. As he and I worked together, over time he got better and better with his language skills. He never did pass his G.E.D. (General Equivlancy Diploma), but he worked hard and learned quite a lot. He also gained more confidence in himself. When I saw him at dinner this past Wednesday he told me about a new job he had assembling bikes and furniture and grills for a national department store. He was getting the most money he'd ever made, and now could read through the contracts and the health care and life insurance policies so he would know what he was signing and what was the best plan for him. He said his boss treated him well and with respect. Pete was relaxed and comfortable with who he was and felt good about the direction his life was going. Pete demonstrates to me what reading and writing can do for a person, but also what perseverance can do. If I were called dumb and stupid by bosses and teachers I don't think I'd have the guts that Pete continues to show. He keeps moving forward, proving doubters and detractors wrong each step along the way.

Some observations about "I'm Not Down" by the Clash

2005-05-23T16:41:00.000-07:00

I've always been a big fan of the band The Clash. I think Joe Strummer and Mic Jones wrote some of the best lyrics in pop punk / rock music history. Below, I've copied and pasted the lyrics to a song, "I'm Not Down," that the two wrote together.

"If it's true a rich man leads a sad life
That's what they say, from day to day
Then what do the poor do with their lives?
On judgment day, with nothin' to say?

I've been beat up, I've been thrown Out
But I'm not down, Oh I'm not down
I've been shown up, but I've grown up
And I'm not down, Oh I'm not down

On my own I faced a gang of jeering
In strange streets
When my nerves were pumping out
I fought my fear in, I didn't run
I was not done

I've been beat up, I've been thrown out
But I'm not down, No I'm not down
I've been shown up, but I've grown up
And I'm not down, No I'm not down

So I have lived, that kind of day
When none of your sorrows will go away
Go down and down and hit the floor
Down and down and down some more
Depression
But I know, there'll be some way
When I can swing everything back my way
Like skyscrapers, rising up
Floor by floor, I'm not giving up

So you rock around and think that
You're the toughest
In the world, the whole wide world
But you're streets away from where
It gets the roughest
You ain't been there."

True, the lyrics to this song could be given a Marxist reading, but I think the words apply to Disability Studies, as well. A part of Disability Studies is a situation called "the stare;" a sense that the public or others are staring at you simply because you are a person with a disability. In this song, the speaker feels not just stared at, but "jeered" at due to two circumstances; he is poor and depressed. It is inferred that his depression is brought about due to the poverty; the two go hand in hand. Even though this song came out off the London Calling album in UK in 1979, the ideas apply to contemporary America. The New York Times has been running a series of articles about class in the U.S. They had an article a few days ago about the link between life expectancy and income level (here's the url to the article: http://query.nytimes.com/gst/health/article-page.html?res=980DE3DC1F30F935A25756C0A9639C8B63 .) The implications in the article, as in the song, is that health is seen as something belonging to the rich; in essence, the poor deserve to be sick and / or depressed simply because they are poor. The song contains optimism: "I know, there'll be some way / When I can swing everything back my way," and "I've been beat up, I've been thrown out / But I'm not down, No I'm not down." But the optimism is self-reliant; he's not expecting anyone else to help him to overcome his struggles and sometimes depression. And the song ends on a cautionary note: "you're streets away from where / It gets the roughest / You ain't been there." I chose this song for this blog because I believe it warns that too often people who are are seen as an "other" are mistreated and cast aside, when anyone wants, whether rich or poor, is a simple thing, to be accepted.

Welcome

2005-05-19T16:01:00.000-07:00

My name is Steve and I am a graduate student getting my MA in English at SUNY Cortland. I am at about the midway point of doing my master's paper. For the paper I'm applying the literary theory of Disability Studies to the two non-fiction books of Andre Dubus. However, this blog will not be focused on Andre Dubus nor his non-fiction work. Instead, on this blog, I will be posting observations about articles, songs, poems, writings, TV, whatever, by applying the theory of Disability Studies to a given piece. I became interested in this field of study because I got diabetes at nine months old, and have had some of the more serious side-effects of the illness. Over time I've come to see that how people treat each other often depends on how well the body is functioning. Most people in modern day America, even if a lot of us are out of shape, want to present ourselves as healthy; which is fine, but when the body breaks down, how then, amidst this health/image driven society, does one respond? People who have clearly visible disabilities cannot hide their situations, and thus are often treated as an "other," as a person not worth associating with. A person with a hidden chronic situation, such as myself, has a choice, but still has to decide how to handle the case. Does a person continue to try and hide the situation? - most likely holding a sense of fear that the ailment may be uncovered by someone. Or does a person speak about the condition? - risking the person will be treated differently now that people know he or she has a physical challenge. As stated above, these questions and ideas will be explored via a variety of forms and media. We'll see what happens. Stay tuned.