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Friday, April 30, 2010

Smoothing the Way--How Long Will it Take

A few days ago the New York Times published an odd story about travel for people with disabilities. In "Smoothing the Way" by Tanya Mohn I was amazed she acknowledged that "people with disabilities never have an easy time traveling". However, I was bitterly disappointed by the second part of her sentence--"a rash of recent improvements including more wheelchair taxis and rental vehicles... have made it easier". This assessment is correct. More taxis at airports will transport people with a disability. More rent-a-car companies have cars with hand controls. What is not acknowledged is the quality of these ordinary services. Sure I can get a taxi at any airport. That does not mean the driver will be happy or even make the pretense I am an ordinary passenger. It does not mean he will not try to rip me off via turning on the meter before I enter the car or well after I exit. Similarly, airline personnel routinely consider passengers with a disability to be extra work and are not hesitate to makes this point clear. Rudeness is the norm and I feel as though I have the plague when I fly. If I assert my rights, I am deemed difficult. The fact what I request, pre boarding for instance, is a matter of law and has been for nearly two decades is of no consequence. I am simply a pain in the ass for an overworked employee.

While I could write pages about my dislike for airlines, I have a special ire for car rental companies. When I rent a car I would estimate 50% of the time the vehicle with hand controls is not present. The company does not mater--Hertz, Avis, National, Enterprise all screw up. Each and every time I rent a car with hand controls it is as though it has never been done before. I also go to extremes--I call 48 hours in advance, call the night before, and morning of the rental to confirm the car with hand controls. I get assurances with each call but the car is never there when I need it. One would imagine this is not a complicated request. The only good thing about not having a car ready to go when I arrive is the free upgrade or steep discount for my inconvenience. But I would gladly trade this for a car when desired. In other words, I wish to be treated like an ordinary customer.

Travel has been on my mind as I am just back from the conference in Baltimore. I think the conference went well. It was well attended and I met many people in the health care profession that clearly care about disability. I hope this care and concern will some day filter down to the care people with a disability receive when accessing health care. What amazed me about the trip was how problem free it was--a rarity. The hotel room was accessible and parking quite easy. The conference presented no barriers--in fact the organizers were on top of every access issue imaginable. I was treated with respect from beginning to end. Wow, I wish all my trips went as smoothly. Sadly, I know this is not the norm even though it should be. On the drive home and upon reading the article in the New York Times mentioned above I cannot help but wonder why travel remains so problematic for people with disabilities. Is it a numbers game? Are there too few of us for airlines, hotels, and car companies to care? I think not. The numbers often quoted in the mainstream media indicate people with a disability that travel has increased significantly. What I think is going on is a culture clash--people with a disability are not expected to travel, assert their rights and certainly not be treated equally. Our presence is an afront to others and the travel industry does not respect us as a group. The result is inferior if not bad service and I assure you travel is rarely smooth or trouble free. In fact what struck me the most about my recent trip was the fact it was trouble free. I thus realized I assume trouble will take place whenever I travel. This is my norm. A norm that must change and I would argue we have a long way to travel to make this happen (sorry for the bad pun).

Monday, April 26, 2010

Conference Paper on the Ashley Treatment

On April 28 I will be participating in a conference entitled "Disability, Health Care & Ethics--What Really Matters". I am nervous and excited. I know what to expect when I meet up with anthropologists at such conferences. However, this conference is going to be made up of a diverse audience most of whom work within the realm of the ethics, science and medicine. How the audience will react to my strident position and words as they relate to the Ashley Treatment is a mystery to me. I just hope I make it home in one piece. For more on the conference see Life with a Severely Disabled Child (

Below is a copy of what I will be presenting:

The Maryland Health Care Ethics Committee Network
And the Law & Health Care Program (L&HCP)
University of Maryland School of Law

Disability, Health Care & Ethics—What Really Matters

Wednesday, April 28, 2010
10:00 a.m.—6:30 p.m

1:00--2:15 p.m. Concurrent Sessions A

Lessons From the Ashley X Case

William J. Peace, PhD

When I heard about the Ashley X case via a disability rights podcast I was outraged. How I wondered could parents and doctors implement such a radical surgical intervention. Two subsequent thoughts went through mind: first, the Americans with Disabilities Act has utterly failed to fundamentally change American’s understanding of disability. The average American is as ignorant today about disability as they were almost twenty years ago when the ADA was passed into law. Second, I was deeply saddened that such a radical treatment was performed on a child with a profound cognitive and physical deficit. This highlighted not only my marginalization from American society but the profound discrimination people with intellectual disabilities currently encounter. Exclusion has remained a constant for “idiots”, “imbeciles”, and “incompetents”. While the words we use has changed significantly since 1900 and the notorious Buck v. Bell Supreme Court decision circa 1927 the deprivation of basic human rights has remained constant (Lombardo 2008). Many states retain laws that deny basic rights to those deemed “mentally incompetent” and even those individuals with adequate support often spend their adult life in poorly supported institutions. In short, I am talking about a group of American citizens, Ashley included, whose civil rights and now their bodily integrity are open to question.
In the last one hundred years many justifications have been used to deny civil rights to people with intellectual disabilities. In much the same way, those that promote the Ashley Treatment or growth attenuation have proposed many reasons for why such a radical intervention is ethically acceptable. The parallels between Buck V Bell and Ashley X are striking to me. They highlight the ethical conundrums involved in allowing or prohibiting the Ashley Treatment. Oliver Wendell Holmes Jr. determined people with intellectual disabilities to be “manifestly unfit” to exercise their rights. For Holmes the core issues were rationality, independence, economic productivity, and morality. For those that lacked the ability to meet these American norms and most importantly did not possess the ability to care for one’s self became lesser citizens. These “lesser citizens” forfeited their civil rights in exchange for care. Those providing care whether it be the state or family held great power. They alone made the decisions that were deemed to be in the best interests of their dependents. This sort of power over another human being is fraught with the potential for abuse and can bring out both the worst and best humanity and medicine has to offer.
I am not suggesting the discrimination people with intellectual disabilities encounter today is the same as what took place in the 1920s (Carey 2009) . My point is that assumptions of incompetence and dependence continue to be used to justify the deprivation of basic human rights for those who are intellectually disabled. Any effective ethics consultation related to the request for the Ashley Treatment must acknowledge that while the discrimination people with an intellectual disability is not as blatant as it once was such individuals are still perceived as somehow different, less human. By extension, then all people with a disability, whether it be Ashley or a person such as myself with a physical disability are at risk and remain one of the few groups of people whom legal discrimination is viewed as appropriate or perhaps socially acceptable.
I hope that my reference to the Buck v Bell case makes ethicist, doctors, and audience members uncomfortable. I have felt discomfort and vulnerable since reading about the Ashley X case. Beyond my personal feelings I think the Ashley Treatment is critically important because two extreme views exist. The doctors in Seattle that initiated the Ashley Treatment, notably Douglas Diekema and Norman Fost, and its proponents firmly believe they are helping one child and potentially many more. In contrast, people such as myself consider the Ashley Treatment morally and ethically unacceptable. Given these polar opposite perspectives, what does an effective ethical consultation require? There is one core issue in my opinion: the sterilization of any child requires judicial review. It is not the place of an ethics committee to determine whether such a course of action is morally justifiable. Moreover, controversial issues such as breast bud removal, the eventual size and weight of Ashley obscure the central issue: the hysterectomy that was performed may have been part of a larger procedure known now as growth attenuation yet the end result was sterilization. Each state has different laws with regard to sterilization many of which are contentious and contradictory. In fact the greatest controversy regarding sterilization pertain to people such as Ashley who are unable to consent. I am not suggesting that sterilization of people with profound cognitive disabilities is wrong—in some cases it is permissible but only after “less intrusive and temporary methods for contraception or control of menstruation are not acceptable alternatives, and procedural safeguards have been implemented to assure a fair decision making process” (Diekema 2003). These are the words of Douglas Diekema, Ashley’s physician and main proponent of the Ashley Treatment.
What ethics committees need to focus on are the facts, foremost among them is that growth attenuation or the Ashley Treatment involves sterilization. Ethics committees cannot direct their attention to any other issue. A quick glance at history will reveal the inherent dangers of overlooking the sordid history of sterilization. For example, in Allan Chase’s The Legacy of Malthus writes that 63,678 people were compulsorily sterilized in America between 1907 and 1964 in the 30 states with such laws (Chase 1977). But there were hundreds of thousands more sterilizations that were nominally voluntary but in reality coerced. Chase quotes federal judge Gerhard Gesell as saying in 1974, in a suit brought on behalf of poor victims of involuntary sterilization, "Over the past few years an estimated 100,000 to 150,000 low-income persons have been sterilized annually by state and federal agencies."
What are the larger implications of the Ashley Treatment? The answer to this question is clear to me: the Ashley Treatment is about more than one girl in Seattle—it is about all people with a disability. We people with a disability are the other, a pervasive and important concept in the social sciences. The other are strangers, outcasts if you will, people who do not belong; they are perceived to be fundamentally different. The other often has fewer legal rights and experience gross violation of their civil rights. Thus at a fundamental level there is an us and them—those with a disability and those without. This is a false dichotomy but is a part of the American social structure and dare I say medical establishment. The degree of disability is not important nor is the type of disability. We people with a perceived disability are simply the other. Given this, I do not consider myself one iota different from Ashley in spite of the great difference in our cognitive ability. In coining the term the Ashley Treatment doctors have not only over reached the bounds of ethics in medicine but sent a shot across the bow of every disabled person in American society. The message is very clear: disabled people are not human—they are profoundly flawed beings and extreme measures will be taken to transform their bodies. Consent is not necessary as the mere presence of people with a disability, particularly those like Ashley with a profound cognitive disability, is inherently unacceptable. Modern science however has come to the rescue and doctors have the technology to save us. The problem with this line of thinking is that it is inherently dehumanizing. Ashley need not be saved, surgically altered any more than me or the people listening in the audience.

Carey, Allison
2009 On the Margins of Citizenship: Intellectual Disability and Civil Rights in Twentieth-Century America. Philadekphia: Temple University Press
Chase, Allan
1977 The Legacy of Malthus: The Social Costs of the New Scientific Racism. N.Y. Knopf.
Diekema, Douglas
2003 “Involuntary Sterilization of Persons with Mental Retardation: An Ethical Analysis”. Mental Retardation and developmental Disabilities Research Review 9:21-26.
Lombardo, Paul A.
2008 Three Generations: No Imbeciles. Baltimore: John Hopkins University Press.