Katie Thorpe: No Hysterectomy and Disability Rights Attacked

The press in the UK is reporting that Katie Thorpe will not have a hysterectomy. Readers of this blog will recall the Thorpe case is similar to the Ashley Treatment that sparked wide spread controversy in 2007. A spokeswoman for the Mid Essex Hospital NHS Trust refused to comment on the Thorpe case due to patient confidentiality. Two disability rights groups, Scope and the Disabled People's Council were pleased with the decision.

I am relieved that Ms. Thorpe's will not be subjected to surgery. I wish others, including Katie Thorpe's mother, felt this way but based on comments in newspapers such as the Telegraph and Daily Mail, this is not the case. Indeed, the venom spewed toward disability rights is nothing short of stunning. Ms. Thorpe's mother claims she had "overwhelming support" and that the NHS was scared by a tiny minority--disability rights groups such as Scope. Thorpe's mother cited "political correctness" as being a factor in the refusal to remove her daughter's womb and stated in the Daily Mail that "the Trust has bowed down to what they perceived to be public opinion". Apparently Thorpe was told that the surgery would not be performed because it was not clinically necessary.

Two of the aforementioned disability rights groups, Scope and the Disabled People's Council, were singled out by Thorpe for sharp criticism. Thorpe's comments were echoed by the vast majority of comments published in newspapers. The comments I read were all supportive of Thorpe and graphically illustrate the cultural divide between those with and without a disability remains immense. Here is a small sampling of what some had to say:

"Katie's mum know what's best for her in this case" and the "buffoons should back down"

"People who know nothing about the family's day-to-day situation are just full of what's right and wrong"

"Nature, for whatever reason, has essentially taken away this girls normal life"

"Disabled groups are delighted, shame on you"

"Its all about the well being and quality of life of a person, why is this even an issue?"

"This is ludicrous! Common sense needs to be brought in occasionally"

The Ashley Treatment and Thorpe case are disturbing at multiple levels and are not yet resolved. In the United States Douglas Diekema who was the medical ethicist involved in the Ashley Treatment is on the lecture circuit speaking about the so called "Pillow Angel". Katie Thorpe's mother vows to keep fighting and hopes her daughter will eventually be permitted to have a hysterectomy. These developments are troubling and demonstrate that equality for disabled people is illusive and an up hill battle.

Rolling Documentary

Most films about disability are terrible. The emotions that film makers want to illicit are consistently negative--fear, pity, and awe. This is the subject of Martin F. Norden's The Cinema of Isolation that discusses the way disabled people have been portrayed in films. In recent years terrible films remain the norm. In fact I would argue a new genre has been created that I characterize as being disability snuff films. Million Dollar Baby is a perfect example and received critical acclaim. I cannot help but note here when I saw the film the audience cheered when the main character was killed--a shocking reaction to me.

In sharp contrast to bad films, at least one documentary, Murder Ball, stands out in that it sends out a very different and positive thought provoking message. I hope another documentary that is currently being aired on PBS, Rolling, can be as successful as Murder Ball. Rolling was created by Gretchen Berland a physician and film maker at Yale University. While I have not seen the film I have heard Dr. Berland interviewed on NPR's Talk of the Nation (http://www.npr.org/templates/story/story.php?storyId=17993638) and saw three short clips from the documentary. Berland, I suspect, is unlike many of her peers in that she appears to be socially skilled and particularly empathetic. The film has an interesting and novel approach. For two years three people who live in Los Angeles that use a wheelchair mounted a camera on their wheelchair and filmed their daily lives. The results seem impressive and I look forward to seeing the film in its entirety.

Rolling will be aired on PBS in the New York Metropolitan area on January 31 at 10PM. Thirteen.org will have the complete listings. In the meantime I encourage people to listen to the NPR show linked above. I would also love to hear from those who may have seen the film.

Reaction to the Pistorius Ban

The reaction to the ban of Oscar Pistorius competing in the Olympics has been as swift as it is negative. AP reports declare that Pistorius' prostheses known as Cheetahs give him a "clear edge over able-bodied runners". This has been stated so many times that it is not even subject of discussion much less dispute. Yet the man who supposedly reached this conclusion, Peter Brueggemann a professor at the German Sport University, did not explicitly state this--the IAAF that banned Pistorius did. Brueggemann studied the protheses used by Pistorius for just two days and specifically concluded that Pistorius was able to expend "25% less energy" and that "the mechanical advantage of the blade in relation to the healthy ankle joint of an able-bodied athlete is higher than 30%". Does this mean Pistorius has a "clear edge over able-bodied runners"? Brueggemann himself does not necessarily think this translates into an advantage. I am by no means an expert on human physiology and sport science but it seems to me more evidence is needed to reach a conclusive decision to ban Pistorius. It also seems to me that the debate about Pistorius has less to do with the limits of technology than it does with one person's inate ability to run very fast via unconventional means.

The implications of banning Pistorius could be profound. Will all other disabled people be banned from competing in the Olympics? Where does the IAAF draw the line on what is socially acceptable technology? Sneakers are fine as is lasik surgery but not prosthetic devices? I have tried to remain objective about Pistorius--a level playing field is the goal for all who compete in the Olympics and governing bodies such as the IAAF are needed. Yet after reading the reaction and comments about the ban of Pistorius I cannot help but conclude a lot more is going on than a discussion about the orthodoxy of running. This in turn has led me to wonder if there are other reasons, far more prejudicial ones, that are preventing Pistorius from racing against other bipedal men. Pistorius is not the stereotypical image of an Olympian--his body is profoundly different than the idealized Olympian athlete. Thus I cannot help but conclude that it is Pistorius' mere presence that is so objectionable to many. This thought came to me after reading the comments appended to an AP report and a particularly thoughtless article by Michael Rosenberg (I feel bad but Pistorius shouldn't be an Olympian, Fox Sports 1/14/08). The tone of Rosenberg's article was snide and demeaning--he portrayed himself as a horrible man for supporting the ban of Pistorius because he "couldn't get past the idea that you run with your legs, and that the best runners in the world, by definition, need to run with their legs". I refuse to repeat the comments left by readers that are nothing short of shockingly prejudicial and bigoted.

If I used Rosenberg's logic I along with every other paralyzed person in the country would be unable to leave our homes and the Para Olympic games would not exist. The only form of normal locomotion is a bipedal gate and based on the comments I read about Pistorius we crippled people had better shut up. Such venom is and remains a shock to me. It makes me realize that we only pay lip service to the rights of disabled people in this country--for if one scratches below the surface the image that emerges is one of out right bigotry. Disabled people are not wanted and their expectations of being treated equally is deeply resented by the majority of people who are bipedal.

Oscar Pistorius Fights for his Rights

According to AP reports, Oscar Pistorius is going to contest the IAAF ruling that he cannot compete in the Olympics. Pistorius will bring his case to the Court of Arbitration for Sport in Switzerland. I admire Pistorius--not for contesting the IAAF conclusions that ban him from competing but for the larger framework in which he has based his argument. AP reports quote Pistorius: "I feel it is my responsibility, on behalf of myself and all other disabled athletes to stand firmly and not allow one organization to inhibit our ability to compete using the very tools without which we simply cannot walk let alone run".

I am interested to see how the media reacts to Pistorius stance. Sadly, I am not hopeful a nuanced view will prevail. Judging by reports and columns already published in the New York Times Pistorius' cause will be demeaning. The IAAF is already attacking Pistorius claiming they have no idea what his motivation is. Like any other athlete with or without legs, Pistorius dreams of competing in the Olympics. As to the IAAF claims that Pistorius prothesis give him an unfair advantage, I suggest they do a little bit of reading about the needless social obstacles disabled people are forced to overcome.

Sport, Disability, and Media Distortion

Avid golfers probably recall the name Casey Martin. They likely remember Martin was the professional golfer who fought for the right to use a golf cart on the PGA tour. In 1997 Martin sued the PGA under the ADA arguing that a golf cart was a workplace accommodation. Martin's case went all the way to the Supreme Court and, much to the dismay of the PGA, the court ruled Martin was correct.

I have not thought about Martin until this morning when I read the New York Times with my coffee. In the sports section I was interested to read a story about Oscar Pistorius (Study Suggests That Amputee Holds Unfair Advantage). Very few Americans know who Pistorius is. I have heard the name and know he is a world class paralympic sprinter from South Africa. I only know this much because Pistorius has had the nerve to compete and beat some bipedal runners. In short, he is a world class athlete but this is not why Pistorius is controversial. Pistrorius wants to compete in the Olympics against able bodied runners. The International Association of Athletics Federations (IAAF), track's governing body, has been and remains opposed to including Pistorius. Even though there is no scientific evidence, the IAAF claims Pistorius' high tech prosthesis called cheetahs give him an unfair advantage over able bodies athletes. The chances of Pistorius ever competing in the Olympics are a long shot at best.

According to the New York Times, the IAAF spent $50,000 researching the Pistorius case and concluded that any disabled athlete that wants to compete against able bodied athletes must prove that any adaptive device such as Pistorius' prosthetic legs does not give them an advantage over able bodies athletes. The IAAF conclusion mirrors recent Supreme Court decisions, especially the Sutton Trilogy, that requires disabled people to prove they are in fact disabled (in the eyes of the court it is possible to be too disabled or, conversely, not disabled enough). When I made this connection between the IAAF and the Supreme Court I realized not much has changed when it comes to the perception of disabled athletes and how they are portrayed in the media.

Disabled athletes and adaptive sports provide mainstream media outlets with endless fodder for what I call feel good stories. Disabled people know what I am writing about--the dreaded 90 second piece at the end of the national news that portrays the "remarkable, "heart warming" story about a disabled person who finishes a marathon or some other athletic event. What is celebrated is not the athletic achievement but the ability of a person to "overcome" obstacles that prove the person in question is amazing. Reducing the accomplishments of disabled athletes to nothing more than such a feel good story is nothing short of demeaning. It reinforces every negative stereotype about disability and conveniently ignores the fact the overwhelming number of problems disabled people encounter are social. At issue is not a disabled person's ability but rather how they handle a specific physical disability. Thus Martin's athletic skills are reduced to a discussion about his request for a golf cart or Pistorius' use of high tech prosthesis. Both men violated a social norm--they are too good. They are significantly better than other disabled athletes and, worse yet, capable of beating able bodies athletes. This does not fit anywhere within the realm of "feel good stories". The result it that the New York Times and other mainstream media outlets do not know what to make of athletes such as Martin and Pistorius. In contrast, like other disabled people I have no such issues. To me, the two men in question are simply world class athletes who deserve respect.

Adaptive Skiing and Sports

My son Tom and I are new to alpine skiing. After he "retired" from hockey last year we were interested in taking up a new sport--something that was physically taxing, fun, and, from my viewpoint, would take him far away from his Xbox. When my niece, who works as a program co-ordinator for Vermont Adaptive, invited us up last winter we jumped at the chance. It turned out my son was a natural on skis. I was not so gifted and struggled for a variety of reasons foremost among them finding the correct sit ski (for a person with a high level of injury, t-3, the correct gear is very important).

This ski season has gone much better. Using a dual sit ski as opposed to a mono ski that is common I expect (hope) to be independent by the end of the season. I love the freedom and sensation of skiing. Being outside in the cold, the views from the summit, and seeing my son speeding by me are all wonderful. But I wonder what other non-disabled people really think about my efforts. In Vermont I rarely get that "Oh my gosh, you are such an inspiration" comment that I detest. Yet I remain concerned about how I am perceived. Do others understand that I am like any other parent who simply wants to spend time with their kid? This question leads me to wonder about the value of adaptive sports. Here I am not referring to events such as the Para-Olympics where the athletes are young, gifted, and driven. These men and women are professionals and should be perceived as such.

I am your typical weekend warrior--nothing more and nothing less. I am skiing to have fun like the vast majority of people. But I am not like others. I use and wheelchair and sit ski. Do people look beyond my wheelchair and sit ski and see me for who I am? I would like to think so yet I am not sure this is the case. When you add in the high cost of skiing my concerns grow exponentially. What is the point of having adaptive sport programs if 70% of disabled people are unemployed? Do not misconstrue what I am trying to get at: adaptive sport programs are great and have a place in society. It is just that on our drive back home I was pre-occupied with the gross economic and social inequities that disabled people encounter on a daily basis. Social stigma and the lack of economic independence prevent far too many disabled people from leaving their home and, for some, visiting a ski area is a pipe dream. As we approached home I broached this issue with my son who has an innate ability to reduce complex issues to their most common denominator. He remarked that I could not change the world in one weekend and that I should really be thinking about ways to improve my form so that I could keep up with him. He went on to note that what made people think the most in his estimation was little a little sign my niece put on my wheelchair while I was skiing. It stated: "Gone Skiing". He told me that as people trudged by, many stopped, thought a second or two and laughed. This, he thought, was an indication that people questioned their preconceived notions about "dudes that use a wheelchair" and that I should just enjoy myself. I hope my son is correct and will work on not only my form but on advances the rights of disabled people.

ER Kills Again

ER is coming to a dreadful and painful end. Last night another bad episode appeared and continued the steady assault on disability rights. It seems the writers have decided to kill every person that uses a ventilator to breathe. Age does not matter--a few episodes ago the writers killed a child and last night they killed an elderly woman. Both murdered characters were sentient and aware. The dialogue was particularly dreadful last night and I have no doubt any one who uses a ventilator must have been deeply offended. I sincerely hope that others who have some experience in this area--not with death but use of a ventilator--will comment on the latest episode of ER and heap scorn on the episode