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.