“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?

A Conference Encounter

I once attended an interesting presentation at the National Collegiate Honors Conference. At the session, I sat with my friends and watched as people from other schools filed in to the not-so-large room. One of them was a young man followed by two women who sat in the front row. After a moment, the session proctor stood to introduce the presenters. At that moment, I realized that something different was happening in the room; one of the women I had noticed with the young man began to sign what the proctor said. It was obvious whom her audience was—she did not stand for the entire room to see, no introduction was made nor explanation given—she was there solely for the young man she was accompanying. I sat there watching with unabashed interest as the woman spelled out each presenters name and mouthed the words of the proctor silently to the young man whose face I could barely see from behind and to the side. Then, it was the first girl’s turn to speak and the whole thing continued.

For each word, a sign was given or spelled out and I actually caught a few with the woman’s sometimes exaggerated facial expressions or mouthing. It was like watching some sort of interpretive dance being given about the presentation. Watching her gave me something else to focus on than the speaker sitting placidly behind the desk. Her gestures were tight, controlled and did not attract much attention, but they easily conveyed the points she wanted. Sometimes, when an idea was too abstract to be easily conveyed by one sign, I would see her tilt her head and sign to the young man that she wanted to say something like what she was literally signing. The young man would nod in understanding and then the woman would move on to catch up with the speaker. On some rare occasions the signer even asked the speaker to repeat a phrase or two so that she could understand what had been said. Meanwhile, I watched as the name “Othello”—the topic of the first presentation—was shortened down to the simple sign for “O” to save time and other names were cut as well. I caught subtle changes between what the speaker would say and what the interpreter would sign because of what the woman mouthed to go with it. When the first presenter was done, the woman stepped down, and the other woman took her place.

The second interpreter was much less animated than the first and, to me, seemed to be the less experienced of the two. She was slower and at the same time required even less space than the first woman. Luckily for her, the second presenter’s character names were short and so they did not need to be abbreviated. Also, the topic was more concrete without as many abstracts to cause confusion. After a moment, I found my eyes wandering around the room and watching the speaker this time out of boredom. I wondered for one fleeting moment if the young man felt the same way, but realized that unlike me, he did not have the option of casually glancing about the room without drawing the woman’s attention to it. Soon though, it was time for the third speaker and the women traded places again.

During this entire process, I found myself wondering if anyone else in the room was as drawn to watching the women sign during the presentation as I was. Did it strike them as odd that this group walked around and translated wherever they went? What the presenters think of the women signing near the front of the room? Did they resent having the groups attention possibly diverted elsewhere? Then, the less complicated questions: What school are they from? Is he giving a presentation? Are they always together? Do they try to pick sessions that would translate well? Who gets to pick which sessions? I wanted to know what I could about all of them, but I was too afraid to ask. I was scared that my staring during the presentation would offend them, but then I realized that it was something that these women were trained to deal with. After all, what is the point of signing is no one is there to see it?

At one point during the session, a friend of mine leaned over and whispered something like, “How cool! I know some sign language too!” She then proceeded to try out a few letters of the alphabet and other random signs. I asked her to stop and she asked me why I thought she should. I gave her three reasons. For one, the women could see us and might think that she was mocking them and she did not want to be rude. The second was that they might think that she was trying to communicate with them. The third was that even if the women paid her no attention whatsoever they did need to concentrate and that would be easier without some odd girl toward the middle of the room signing random things in their line of sight. For my part, I was mostly concerned with the thought that the women might assume that we were mocking them; I did not want to seem rude. Even though I could not help but watch the women as they signed, I almost felt that that was alright somehow. It was as though since they were alright, staring was alright also.

When I left the session, it struck me that I had seen the young man walking around and never noticed anything different about him; he blended in with the other hundreds of people. I asked myself if maybe that was what he wanted. Granted, there was nothing low-key about being signed to during a session, but there was something anonymous about his disability the rest of the time. Today, I wish that I had spoken to the young man to ask him my questions, but I know that I would not have found a polite way to phrase them without seeming nosey or rude. My curiosity was my own and he was, and is, another human being that does not need to hear or answer every question I have about him. In the end, all I could do was wonder and watch and hope I caught on along the way.

Big Brother Autism Slur

The key to the ratings machine for reality television lies in creating controversial situations and topics from the so-called unscripted actions of its main characters. Apparently, CBS got more than they bargained for when they chose to air the offensive comments of one of their reality show contestants. Adam Jasinski, a public relations manager for the United Autism Foundation and housemate on CBS’s show Big Brother 9, made comments about his work with children he calls “retards.” Jasinski claimed that he would use part of his winnings from the show—half a million dollars if he won first place—to “open a hair salon for kids with special needs, so the retards can get it together and get their hair done.” His housemate and partner in the game, Sheila, reacted with disapproval to his use of the word “retards” to which Jasinski responded with, “Disabled kids... I can call them whatever I want, OK. I bust my ass to help these special-needs children!”

Since the episode aired, CBS has been defended its use of the clip by saying that Jasinski’s words are his own, and are offensive, but the negative reaction of the other housemate showed this and therefore the clip was alright to air. Meanwhile, the show has lost advertising from home-improvement store Lowe’s and been leveled with complaints and criticism from other autism groups. On top of the show’s problems, this has drawn unwanted attention to the organization for which Jasinski claims to have worked.

Normally, I would shrug off the rude or offensive comments of a person on reality television; after all, they are there for the money and attention, so if they say something inappropriate, they can always go back and claim they just said it to get airtime. The amount of news that has been generated by this shocked me, mostly because people generally do not pay attention to what is said by the contestants on reality shows. This comment has created a stir among people who would not normally be discussing disability issues. I was happily surprised that Lowe’s pulled its advertising over the comment. Perhaps Lowe’s warned CBS about cleaning up its act after past incidents and this was the last straw. Then again, perhaps Lowe’s has realized that airing such content is CBS’s choice and such content is offensive and hurtful to more than just the people on the show.

Jasinki’s comment reminds me of the common line used by people in defense of racist comments: “But some of my best friends are….” Jasinski’s claim that he works with “special-needs” children does not help him defend his statement, if anything, it highlights the fact that he should know better than to use such language. Even his use of the term “special-needs” after the word “retards” further emphasizes the impropriety of word. The website for the organization Jasinski claims to work with often uses the term “special children.” This phrasing reminds me of Simi Linton’s discussion of the word “special.” While I disagreed with Linton’s argument against the use of the word “special” when I applied to education, I agree with the argument here because the words “special children” does come across as an attempt to be too politically correct and patronizing. Considering the group is geared specifically towards autism, why choose the words “special children?” Does the organization mean to be more inclusive by saying “special children” rather than saying “autistic children?” Perhaps this odd phrasing is what has Jasinski so confused about what he should say.

In the end, the comments made by this contestant are hurtful, but they have also proven to be useful. One blogger who commented on the controversy noted an increase in the visitation to her site and was grateful that something positive is coming from this otherwise distasteful situation. By writing and speaking about such offensive comments, people are reinforcing the idea that such comments are just that: offensive. Until the people using such language are made aware of its offensive nature, they will continue to use it without thinking. CBS may be guilty of trying to gain from one man’s ignorance, but they are not alone. At least now, with the disapproving actions of Lowe’s and other advertisers, they are allowing themselves and their contestants to be made examples of for any other show that may be thinking of airing such material. In addition to that, perhaps the inquiry into the organization will reveal whether or not it is worth the money and time that people have donated to it. Perhaps there could be a silver lining to this discussion after all.

Nightline: “'Underdiagnosed' Girls With Autism Struggle to Fit In”

Kaeda Sakai is an eight year-old girl with autism. Through her story, ABC’s Nightline program explores the issue of under diagnosed girls with autism. These girls face difficulties unknown to the average child and misunderstood by the average adult. Unlike their male peers, their symptoms are often explained away as simply being a part of what makes them female. They are “drama queens” or just socially inept when really they show signs of a much greater problem. By remaining undiagnosed, they miss the opportunity to receive the assistance that could help make their lives both easier and more enjoyable. This story tries to understand what makes “girl autism” so different, and how this affects the diagnosis of the girls and young women who live with it every day.

As a young woman, it is not hard for me to relate to difficulties that come with trying to decode the social workings of young girls. They are a group that can be both welcoming and off-putting at the same time, and they require acute attention to social cues and interactions. For a girl with autism not wired to interpret these cues, the effects must be socially devastating. For a young man to be anti-social might be seen as atypical but acceptable; for a young woman, it is unheard of. These young girls with autism are automatically at such a disadvantage with their peers that it must be devastating. A diagnosis could lead to some treatment and an understanding that could only help. On the other side, would the stigma of being a girl with autism only cause more trouble or other issues?

This video discusses the idea that many girls go undiagnosed because they are taught the social skills necessary to pass the diagnostic examinations. They are so developed in this area that only highly trained professionals can really recognize the signs of autism. Is this a form of passing even in young children? Are they taught at such a young age what is acceptable and not that they can hide their disability long enough to remain undiagnosed?

While it is not plausible to think that an eight year-old girl would purposefully try to fool anyone so that she could avoid being diagnosed, it is plausible to think that she has been trained to please adults and so she would try her hardest to do so. Kaeda’s case is special because her parents already had two autistic sons and were therefore better prepared to look for signs of autism in her; the average parent does not have the background knowledge needed to recognize the signs of such higher-functioning forms of autism.

Overall, I believe this article served its purpose. It managed to explain through one benchmark case just why young girls are underdiagnosed with autism. It did not try to understand why girls and boys behave differently with autism or the nature of autism at all. It even acknowledged that it did not answer the question of the difference between “girl autism” and “boy autism.” By doing so, the story was able to focus on what it really wanted to explain, and to tell the story well. The human aspect of this story was what counted, not the science behind it or anything else.

Sloth

The 1985 film, Goonies is an underdog story of a group of teenagers who band together to keep their homes from being bulldozed and turned into a golf course by wealthy land developers. During the film, the audience meets Sloth, a large, disfigured man, and part of the villainous Fratelli family. With his asymmetrical eyes, odd-shaped head, and incredible brute strength, Sloth is unique enough, but added to that is the monstrous treatment he receives from his mother and brothers—they chain him to a wall in a damp basement—and an apparent mental disorder.

In an introduction worthy of Dr. Frankenstein’s monster, he rattles his chains and howls from his small, dark cell, frightening any person who wanders past. During the film, he becomes a hero as he helps save the main characters from his own family through his friendship with the character, Chunk. Chunk even adopts Sloth at the end of the movie. Sloth’s story has a very happy ending, as does the film.

I have always loved the movie Goonies since I was a little girl, and the character of Sloth provides some of the most memorable moments. For many years, Sloth terrified me. His introduction always made me jump, and I could not understand how someone could look like he did. It was not until I was older that I realized that someone under heavy make-up was playing Sloth.

The friendship that develops between Sloth and Chunk is one of the best parts of the film; Chunk is almost utterly unlikable to me, and so his attachment to Sloth, and vice versa, is his one redeeming quality. Between the two of them, the underdog theme gets a completely new angle. Not only are those two characters part of the lower class in the film, they are even the lowest in their close groups. Both are made to feel and seem like outsiders only useful for the entertainment of others. Chunk has his “truffle shuffle,” an embarrassing dance his friends make his perform, and Sloth’s brothers enjoy playing cruel jokes on him and using his mental disability for their amusement.

From a technical standpoint, if Sloth had really existed, he would likely have been a part of some sort of freak show. His physical and mental disabilities would have made him a prime target for slick, traveling showmen. Add in the unkind family he is shown to have in the film, and it is clear that he would have been easily sold off for profit. People like Sloth have often been hidden away by family members or otherwise kept out of the way, and Sloth would have been no exception.

His connection with Chunk forms from this stigma placed on the overweight boy and the monstrous relative. The bond that forms between the two shows just how close two people can be even with extremely different shortcomings or stigmas. Sloth is the catalyst that helps Chunk realize his full potential and save his friends, thus proving that even the people from whom the least is expected can reach their potential in the end. Whether these characters are simple caricature or complex representations of the underdog must be decided by each person who views the film. In the mean time, I am sure Sloth will live on as one of the most memorable parts of the movie, and a significant piece of pop culture history.

Artifact One: “Wheels” and the Burger King Kids Club

During the 1990’s, Burger King introduced the “Burger King Kids Club” and to go with it, the “Burger King Kids Club Gang.” This “gang” was a group of colorfully animated, culturally diverse cartoon kids that would help the restaurant compete with the fast-food giant, McDonalds.

To make the group as appealing and politically correct as they could, advertising executives tried to diversify the group racially and also added a boy named Wheels, who got his name from his wheelchair and apparent love of speed. Wheels was in a wheelchair, but this was no ordinary wheelchair, his was controlled by a joystick and included exhaust pipes coming out of the wheels.

I do not remember how I felt the first time I saw Wheels when I was younger. As a member of the club, I saw the little videos that the characters were in, but I do not think it struck me as odd that Wheels was in a wheelchair. In fact, the way the character is treated, it seems as though he is in the wheelchair of his own volition and only chooses to be in it because he likes the speed and mobility of it. Rather than appearing as though the wheelchair represents some sort of affliction, it becomes the cool choice of a kid who just wants to go fast.

When I tried to remember the names of the other characters, I have to admit that Wheels was the only I could come up with which I suppose is a testament to the skill of the advertisers that created him.

This artifact could be seen as just an advertising play to try to and cover all of the bases, but the timing seems to point to something else. The year 1990 marked the passing of the Americans with Disabilities Act, an event that could possibly point to why the Burger King marketing executives felt that adding a disabled child to their marketing campaign would be effective. With the addition of Wheels to the gang, Burger King would not only reach a slightly wider audience of children, but they would appear socially aware to the parents who would ultimately decide where those children ate.

Whether anyone with a disability was consulted for his or her take on the campaign may never be known, but it does not appear that Burger King wanted to make any large social statement about disability. Wheels’s ultimate goal was to sell burgers to small children, not open eyes to a largely over-looked group or topic.

A critical eye could easily see the character Wheels as a shameless way to play into the changing times of the early nineties. In their need to appeal to a broader audience, Burger King thought to appeal to every group that they could think of without giving any of those groups any real depth. By doing so, they become pointless stereotypes of little-to-no feeling and of little consequence. Perhaps the character of Wheels did make some children feel better about their own issues, and perhaps he was just a pawn. In any case, the character managed to be out in the public eye without causing any sort of notable controversy. In the end, Wheels and his friends served their purpose in bringing kids and their parents into Burger King restaurants around the world, so he has done his job. One simply has to wonder though if he could have accomplished much more than that.