Wednesday, April 23, 2008

Star Trek: The Next Generation

Season 2, Episode 6
Although representation of disability is not typically the first thing that comes to mind when thinking of Star Trek, one should consider that one of the show's main characters has a disability. Geordi LaForge (LaVar Burton) is blind, and sees the world through his high-tech visor. La Forge explains several times throughout the series that while his visor does allow him to visually interpret the world, it does not give him real human vision. He cannot see as other humans do.

The main plot in this episode revolves around the ship encountering a famous deaf peacemaker who uses three different translators to negotiate peace all over the galaxy. This method works so well for the peacemaker that when his translators are killed, he becomes enraged and has lost all ability to communicate. This puts everything in danger, as he can longer negotiate peace or instruct the crew. He is unable to communicate with anyone until another crew member learns his sign language, and eventually, he does begin peace negotiations. One character actually tells the peacemaker to “make an advantage out of a disadvantage.” He ends up making peace on a planet by teaching them all sign language, so that they will have a common ground. This plot seems to show that disability can be turned into ability; in this case it inspires a language bridge between two cultures.

Meanwhile, in this same episode, the ship’s physician tells La Forge that she can “fix” his eyes and give him normal human vision. At first he sounds excited, having always been told that it was impossible. But suddenly La Forge’s mood changes. “I don’t know,” he says, “I’d be giving up a lot.” In this sub plot, it is shown that disability is another way for people to be unique, and perhaps the potential for difference between people is a thing to be celebrated.

Attitude TV

Attitude TV is a New Zealand-based television series that can also be watched on the internet. Attitude TV is very much in line with the “nothing about us without us” movement, with outspoken “presenters” or reporters who have disabilities. All three reporters use wheelchairs, but pointedly do not let it stop them from using traditional journalistic shots, for example, establishing scenes that show the reporter entering a building. These kinds of scenes necessarily make the wheelchairs obvious, yet this TV series is all about attitude – and the attitude is just not centered on the wheelchairs themselves, but the fact that these reporters can do the same things as other reporters.

Attitude TV is made up of short episodes featuring individuals in New Zealand with disabilities. Individuals and their families typically discuss their lives in New Zealand – whether their ordinary daily activities or their individual and unique feats. Sometimes the episodes are themed, like several on athletics or the transition from high school to university for adults with disabilities. These episodes are very news-oriented in style, which streamlines the series and denotes it a sense of credibility.

Much of Attitude TV speaks for itself, with the clear intention of giving the representations of disability a make-over. In their own words:

“We want to show all our viewers that people with disabilities:

  • Are movers and shakers.
  • Are elite athletes.
  • Are entrepreneurs.
  • Have a social conscience.
  • Have a political voice.
  • Make a vital contribution to society.
  • Love, laugh and lead amazing lives. "

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"Life With Anthony"

What would you do if you could know ahead of time that your child would have a life-long disability? Because Trisomy 21 can be detected during pregnancy, Lisa Spellman asks herself this very question in Margaret Renkyl’s article, “Life With Anthony.” According to this article, about 90% of pregnancies that test positive for Down Syndrome are aborted, but Lisa claims that if she had had the test and knew Anthony would have the disability, she would have carried the pregnancy to term anyway. What is most interesting about this article, however, is the words used to describe Anthony and his disability. The title, for example, gives a hint to the strange word-play to come, because the first thing that comes to mind after reading “Life With Anthony” is “Life Without Anthony.” In this way, I feel the young boy is equated with and identified by his disability. This kind of labeling can create stigma. The word choice of the section headers in the article will be discussed to show the pessimistic representation of disability.

The first section header is “Devastating news,” implying that Anthony’s initial diagnosis of Down Syndrome was a terrible tragedy; devastation is a term used to describe natural disasters, ruin, and death. It should not be used to describe the diagnosis of a little boy. The next section title is “Coming to terms,” which echoes the tragic quality assigned to Anthony’s diagnosis. When I think of the phrase “coming to terms,” I think of dealing with unavoidable crises. While Anthony’s disability came as a surprise, his family’s reaction is darkened by being described by this phrase. The final header in the article is “Fears and hopes.” By placing the word fear in front of hope, Down Syndrome is once again described in terms of devastation. One wonders what there is to be afraid of; Trisomy 21 is a disability, not a convicted kidnapper or murderer. The fear and stigma of Anthony’s disability seem to overshadow the fact that he can still have a good and productive life. This article is very telling of the stigma attached to disability, and it seems possible that these word choices were even accidental, or without such intention. Most of the headers in “Life With Anthony” clearly imply trepidation and doom for a little boy, and these headers are all assigning meaning to the label of disability that has been bestowed upon him.

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“Talk” is a short film that shows two days in the life of a young executive businessman, and the events that cause him to change his views on people with disabilities. At the opening of the film, he dismissed individuals with disabilities as a social and financial drain, but when he wakes up the next day, he quickly learns what it is like to be stigmatized. The young man has entered a world in which disability is the norm, and because of his able-bodiedness, he is treated callously and not taken seriously. Later, he feels romantic rejection as a beautiful young woman in a wheel chair explains, “It’s not that I don’t like you…”

Only when the young man wins his date over does this episode end, and he ‘wakes up’ in the business meeting from the beginning of the film. When the new disability bill comes up again, the young executive pauses before saying he doesn’t want to discuss it.

For a ten-minute film, “Talk” says a lot! It illustrates the difficulty of living in an often hostile world that is not always tailored to one’s needs. The film is unique in its method of showing the viewer these things; the viewer is not told these things through dialogue or narrative. Witty and succinct, “Talk” doesn’t try to show an audience how it feels to have a disability, but rather changes what it means to have the stigma of a label.

The title “Talk” has quite a bit of weight. The film opens with a lot of jabbering in a business meeting. Everyone is talking at once about a new disability bill that has been passed, and they are not pleased about it. It is interesting how this is portrayed in an instant as babble. Furthermore, throughout the film, the young man is spoken to frequently, and always like an unfortunate thing. Even phrases like, “How brave of you,” are really just babble, impeding true communication; no one listens to what the young man says in the second reality.

At the end of the film, back in this reality, the young executive has changed his mind. When asked his opinion on the bill, he says he doesn’t want to talk about it. This is an odd move by the film makers. It almost seems like a warning against babbling about or to individuals with disabilities. Or perhaps the scene, along with the title, is supposed to encourage the counterpart of ‘talk,’ which is to ‘listen.’

Abnormal Psychology: The Problem of Maladaptive Behavior

Abnormal Psychology: The Problem of Maladaptive Behavior, by Irwin and Barbara Sarason, is an old textbook I found in a junk shop some years ago that was published in 1987. When I noticed it on my bookshelf the other day, I was curious about what it said, and how it discussed abnormal behaviors (whatever those are!), caused by various disabilities or illnesses.

First of all, the title is a clue to the insensitive terminology in this book: Abnormal Psychology. ‘Abnormal’ is a questionable term these days when discussing disabilities and the behaviors or physiologies associated with them. The two sections of the text I felt may be most applicable to course discussion were one defining abnormal behavior and one discussing how mental disabilities were viewed historically.

This textbook defines abnormal behavior in surprisingly ambiguous terms. “Abnormal psychology deals with how it feels to be different, and the meanings that get attached to being different, and how society deals with people whom it considers to be different. The spectrum of differentness is wide, ranging from reality-defying delusions and severe debilitation… to behavioral quirks that we would be better off not having” (2). So abnormal behavior is “different” behavior, and abnormal psychology tries to see the relationships of a “different” person with himself and with society. I find it interesting that these behaviors are clearly described as undesirable; this is obviously not sympathetic to the Disability Rights movement.

The second section I found noteworthy was the section on historical views of maladaptive behavior, beginning with ancient peoples and the Greeks. The text describes that ancient belief – or fear, rather – that abnormal or “different” behavior is rooted in evil or mysticism. The book lists exorcisms and the aid of shaman as old remedies for the behaviors of the mentally disabled. I noted that this book, published in 1987, discusses these fears and especially exorcisms, with a warning not to dismiss these “primitive views,” (29) wisely reminding readers that these ancient fears are still alive. This reminds me of the fatal exorcism of an autistic boy in Milwaukee, as recently as 2003.

Some ancient peoples blamed organic causes for “different” behavior, believing that a defective organ caused mental illness or madness. Other societies strongly blamed a clash in the way a person “thinks, feels, or perceives the world” (29). In other words, they put the fault of disability onto the individual who had it.

As for the Greeks, during Homer’s time, “disturbed or psychotic behavior was interpreted as a form of punishment for offenses against the gods” (30). Indeed, now that I think of it, wasn’t that one of the main issues in the Iliad? And isn’t this a view that people still hang on to? Sometimes, especially in rural areas, a disabled child is seen as punishment to a sinful mother or father.

The most interesting aspect of this section was that a lot of the fear and strange beliefs about disability have been around for a long, long time. It really sheds light on how archaic some of these persistent beliefs (like disability as a punishment from God) are! People with disabilities have had many representations over thousands and thousands of years – and most of them have not been optimistic. The text itself, however, does not entirely discount these views, which it seems to present without much comment. While focusing on the need to help, the need for therapy for individuals with maladaptive behavior, the book is somewhat in line with old belief systems, simply because it continually reinforces abnormality to be undesirable.

"Blue-Eyed Cat"

“Blue-Eyed Cat” is an oil painting by a local Upper Cumberland artist, Mike Rewis. This man has a lot of talent, but he also has a disability. His work is supported through an art program he is involved in, and “Blue-Eyed Cat” is one piece of many in the theme of cats. The artist has had his art featured on postcards, pamphlets, t-shirts, and in the newspaper and galleries, and not just local galleries. His work was also chosen to appear in a gallery in the Vanderbilt Kennedy Center. He makes an income by selling some of his art, and seems successful in this endeavor; I finally purchased this piece last fall. The artist is vocal about and very proud of his creations and seems to find a good deal of fulfillment in making them. He has told me that he enjoys making art – and especially selling them!

I chose this aesthetically appealing and whimsical interpretation of a cat as an artifact because it makes a statement about how artistry and disability are represented. The program this artist is involved in promotes an exciting reinvention of individuals into artists. Wherever the work of this program is shown or sold, there is typically information nearby describing that the art is created by adults with disabilities. This creates a sort of wow factor, and I hope it causes passersby to rethink what it means to have a disability… and a dream.

I think it is amazing when anyone is empowered by finding a passion and pursuing it. This artist and many others have received support to gain recognition as an artist, not just somebody with a disability. Art is also a great equalizer in that it often illustrates universals of the human condition. This art isn’t about “overcoming,” it is about reinvention, something I think every human being does and even strives to do, and it is about being creative and sharing that creative vision with others.

Tuesday, April 22, 2008

“A Wrongful Birth”

“A Wrongful Birth” by Elizabeth Weil first appeared in the NY Times Magazine in March 2006. In the article, she explores the reasons how wrongful birth suits gained the place they have today, what this means for the future of medicine and what exactly constitutes the means to try a wrongful birth case. She draws mainly from the story of the Brancas, a New York couple who sued their doctors after their son A.J. was born with Wolf-Hirschhorn syndrome. The parents love him, they say, but would have made the choice to abort him if they had been informed of his condition. Their lawsuit contended that the doctors in their case should have seen warning signs—bleeding during the first trimester, unusually small fetal growth—and advised Donna Branca, the mother, to undergo further tests. The winnings from the multi-million dollar case are now used to pay for A.J.’s care. Weil even speaks of her own pregnancy and the decision she made to abort after being informed that her fetus had contracted a virus that would have caused severe issues.

After searching through several stories, I found this one to be the clearest look at the draw of such a case. It was certainly the most sympathetic, which probably stems from the acknowledged bias of the author. After all, how could one woman who chose to abort her child based on genetic testing harshly criticize another for wanting to have that same choice? In fact, as soon as Weil makes her disclosure, the article seems to have a new twist. Most of the articles I read featuring wrongful birth suits were clinical reports of facts; Weil’s article is clearly not.

I thought some of the statements made in the article were based on incorrect assumptions. While Weil claims to be working outside of the sphere of influence for the negative assumptions made about raising a child with a disability. She even goes as far to make the statement that “no reasonable person would choose sickness over health” implying that given the choice no parent would choose to have a disabled child. It may be true that no parent would choose to have a child that would go through life suffering with a debilitating illness, but there are some parents from disabled communities, like the deaf community, that would choose to have a disabled child. Weil may not have meant this kind of disability, but I think she risks being too flippant with such a general statement.

Also, the Brancas claim that they would not have been so upset with their doctors if the doctors would have apologized. Such a statement is ridiculous. Doctors are not in any position to apologize to their patients no matter what the outcome of their care especially with so many lawsuits waiting to happen. An apology would mean an admission of culpability and they could not provide that.

Another detail that raised my interest was the use of a “Do Not Resuscitate” form to prove that the Brancas would have terminated the pregnancy had they been given the option. It is an interesting idea to assume that a couple who would choose not to resuscitate their child would choose to abort. After all, there is a distinct difference between choosing not to continue suffering after a cardiac arrest and to choose not to see if the child had complications to begin with. Another tactic used by the Branca’s legal team was to show videos of A.J. as a toddler and an infant to show the difficulties faced by him each day. If anything was guaranteed to tug on the heartstrings of a jury, that was. The money is going to pay for A.J.’s daily care, so it makes sense that they should see what that care entails.

In the end, I am left with several questions about this type of trial, and none of them are easy to answer. Is this really a viable way to force doctors to keep their patients informed? Or, is it just another way for people to blame doctors for things beyond anyone's control? Should someone sue for the right to have the option to abort a pregnancy and, if so, where do we draw the line?