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Saturday, February 7, 2009

Ableism: SNL, Paterson and Bad Humor

The first time SNL lampooned David Paterson I was not amused. Well, actually I was more than a little mad. Go ahead and make fun of Paterson and every other elected official. I love this sort comedy and always have. SNL is the master of this sort of political humor and has experienced a resurgence of sorts thanks in larger part to Tina Fay's hysterical impersonation of Sarah Palin. If I can find the humor in Fay as Palin why am I mad at when Fred Armisen lampoons Paterson? SNL skewered Palin for what she said and her political views. SNL can go right ahead and do the same to Paterson and they sure do have plenty of material for comedic fodder. But SNL does not want to stop at making fun of Paterson's political gaffs. No, they have relied on cheap, antiquated, and bigoted humor that makes fun of the fact Paterson is blind. These gags are offensive and many have stated that SNL crossed the line. I agree. Groups such as the National Federation for the Blind and the National Coalition for Disability Rights have been particularly critical.

Last night when I was out watching my son perform in a play SNL came up during the intermission and I was asked what I thought of the Paterson skits. My response was emphatic: the skits were not funny. They were an insult to all people with disabilities. My friends thought I was humorless, a prototypical academic unable to connect with the world in which they interact. Worse yet, I could not take a joke. In reply I asked would they laugh at jokes from the 1930s that portrayed black people as less than human? What about anti-Semetic jokes about concentration camps. Would they find this humorous? I think not. My comments ended the discussion quickly. No one knew how to reply.

So, here we are almost 20 years after the ADA was passed and the average American does not have a clue as to the bigotry and ignorance people with disabilities encounter. This lack of knowledge surrounds us and is especially evident in newspapers. Even in articles that are intended to be supportive of Paterson and critical of SNL miss the mark. For instance, in the New York Times yesterday there was an article by Clyde Haberman entitled "A Governor's Sense of Humor put to the Test". Haberman considers the SNL skit "creepy". He quotes disability activists who make good points and clearly finds much fault in the SNL skits. While this is great, some of Haberman's opening comments are as antiquated as the SNL skit. For instance, Haberman writes that "across the years he [Paterson] triumphed over affliction" and that his "ascension in Albany last year was a fluke" that "gave the sightless new reason to take heart". These sort of comments are as bad if not worse than the SNL skit. Paterson has repeatedly stated that the color of his skin created fewer social barriers than did the fact he was blind. Paterson consistently mentions the fact that the unemployment rate for people who are blind is 70% Moreover, Paterson's rise to power was no fluke. He is a competent, a gifted speaker, and been active in politics for decades. He intends to run for governor and in spite of a few rough patches (like the Senate seat/Caroline Kennedy debacle) has handled himself with great dignity.

In the weeks and months to come I hope to witness a more nuanced view of the politics of disability. This has already started via commercials that attack Paterson that were paid for by state health workers' union and the association of hospitals. The commercial features a blind man sitting in a wheelchair wearing sun glasses that asks "Why are you doing this to me?" Paterson sees nothing wrong with these ads nor has he ever complained about the content of SNL skits that poked fun of his views as governor or his well chronicled personal indiscretions. All this goes with being governor of New York. Paterson knows this as does every other governor in the country. Thus I am not worried about Paterson as he can fend for himself. But I do worry about the impact bigoted humor has on the general public and that is where SNL crossed the line. I get this as does Paterson and disability rights activists. I wish everyone understood and until they do bigoted humor will still appear to be, well, funny, when it is anything but.

Thursday, February 5, 2009

Framing the Debate: Assisted Suicide and Disability

It is frigid in New York. When I woke up it was 4 f. and I measure this sort of cold by the creeks and cranks that materialize in my wheelchair when the temperature dips near zero. Since it is too cold to spend much time outdoors I have been doing a lot of reading. Last night I finished Edwin Black's searing War Against the Weak, one of the best books I have ever read about the Eugenics movement in the United States. This morning I read too much about California's Terminal Patients' Right to Know End-of-Life Options Act that was signed into law recently. My reading choices have made me cranky. The assisted death movement has gained tremendous momentum in the last year and I am deeply worried about the implications of recent legal changes in Washington, Montana and California. When I expressed these reservations to a friend they thought I was being reactionary. "Come on", this person said, "you live in the burbs and have nothing to worry about. Hospitals and doctors would never treat you poorly." This assessment is wrong and indicates why the assisted suicide movement has been so successful.

At first glance assisted suicide makes sense. Surely people should have the personal autonomy to decide when their life is not worth living. Terminally ill people should not needlessly suffer when death is inevitable. This seemingly logical position is fraught with error. Terminally ill people rarely take advantage of assisted suicide and substantial confusion exists with regard to exactly who is and is not terminally ill. Life is far more complex and in this regard I often think of the work of Susan Sontag who wrote about her experience with breast cancer. In Illness as a Metaphor she wrote:

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick...I want to describe, not what it is really like to emigrate to the kingdom of the ill and live there, but the punitive or sentimental fantasies concocted about that situation... My point is that illness is not a metaphor, and that the most truthful way of regarding illness--and the healthiest way of being ill--is one most purified of, most resistant to, metaphoric thinking. Yet is is hardly possible to take up one's residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped.

Like it or not, doctors, nurses, health aides, administrators, EMTs and the myriad of people associated with what we call the health care system are human. Mistakes are made every day in every hospital in the country and I doubt that will ever change. People that work in hospitals often hold firmly entrenched views and too many rely on preconceived notions that may or may not be accurate. Again, this will not change because we are all too human and prone to error. I know a lot about preconceived ideas because I never cease to be amazed by the overwhelmingly negative perception of disability. In my daily life this is a major inconvenience and source of aggravation. In a hospital setting such negative assumptions about disability are simply dangerous. In part, this is why I can identify with not just other groups of people who have been disenfranchised but those who have extended hospital admissions.

It seems reasonable for health care professionals to inform people who are terminally ill about end of life options available to them. We Americans love full disclosure about as much as we love to sue the pants off one another. What is conveniently ignored is just how debilitating it is to be hospitalized for an extended period of time. When you then factor in age, disability, and recognition that one's life is nearing an end depression is a logical and perfectly sane response. So let me ask what happens when you are disabled, depressed, ill and then encounter a well-meaning person that thinks life with a profound disability is not worth living. Afterall no one wants to be paralyzed and use a wheelchair. Paralyzed people cannot have children, marry, hold a job, and lead a rich and rewarding life. Why even if a disabled person survives they are likely to end up in a nursing home. Who wants that sort life? This leads me to ask is a disabled person really going to be fully informed? Will such full disclosure push such a person over the edge and crave death instead of life? Will a psychological consult and treatment for depression be stressed or will death be seen as a preferable course of action? This is not the sort of personal autonomy I think most have in mind when they think of assisted suicide.

What terminally ill people need is care and compassion. What disabled people need is equality. I do not see how the new California law AB2747 helps anyone except those that want to see assisted suicide become increasingly common. The answer to the needs of the terminally ill and the equal rights of disabled people are not being met by any law that makes death appear to be a valid medical option. This is just too easy, seductive in it simplicity and deadly. What is needed is a system designed to ameliorate the disorientation and social isolation associated with long term hospitalization. I am merely more vulnerable and aware of this having had been hospitalized for prolonged periods of time. So for those that think assisted suicide is reasonable, I suggest a little reading and more thought is required. I am confident the vast majority of people willing to do this will agree life is indeed sweet and worth living. Whether one is disabled or terminally ill is not relevant to this debate, this just makes us more vulnerable to misguided law makers and medical practitioners.

Wednesday, February 4, 2009

Ashley X: Intrigue and Ethics Collide

It has been more than two years since Ashley X, the so called Pillow Angel, was thrust into the national spot light by her parents. In 2007 and 2008 hundreds of articles were written about what the press dubbed the Ashley Treatment. This controversial case has generated violent reactions and two factions exist: those that support the parents decision to attenuate their daughter's growth and surgically remove her breast buds and uterus. In contrast, disability activists and civil rights groups are staunchly opposed to growth attenuation and the bundle of surgical procedures performed on Ashley X.

Since I first read about Ashley X I have consistently hoped common ground could be found between those for and those against what I will refer to as the Ashley Treatment. I am staunchly opposed the Ashley Treatment but I am not a doctor and I have been and remain open to why some doctors think the Ashley Treatment should be a viable option for children with profound cognitive disabilities. I want to know how an institution such as Seattle Children's Hospital can ethically and medically justify why growth attenuation and surgery is necessary for what I consider a social problem--the failure to recognize the civil rights and bodily integrity of children with profound cognitive deficits. Thus I have followed the Ashley X case as closely as one can and in the last month I have spent a great deal of time reading what has been published in medical journals, disability rights magazines and blogs, and the mainstream media. I have also contacted key figures on both sides of this debate albeit with mixed results. Before I get to my own views let me provide readers with references to material that I think is thought provoking. I leave it up to readers to delve into these references.

1. The Seattle Children's Hospital website, specifically the Treuman Center for Bioethics. Under events see the Ethical and Policy Implications of Limiting Growth in Children with Severe Disabilities, May 16, 2007. The hospital has archived this event and one can see the entire symposium. The archived tape is fascinating as one gets a sense of the people and personalities involved.

2. Emi Koyama has reviewed the 2007 symposium and the most recent symposium held in January 2009 on her personal blog (eminism.org/blog) and at the website What Sorts of People. Emi is the director of Intersex Iniative, a Portland Oregon national advocacy organization for people born with intersex conditions. Her notes are very good and insightful. I agree with much of what she wrote but not all.

3. What Sorts of People website. Dick Sobsey at the John Dossetor Health Ethics Centre at the University of Alberta has blogged about Ashley X and has a series entitled Thinking in Action: The Modern Pursuit of Human Perfection. See What Sorts of People entry on January 24, 2009 for specific links to his writings on this subject.

4. The Hastings Center Report for January February 2009, V. 39, #1. A subscription is required to read anything more than abstracts of the work of Susan Gilbert, Alicia Quellette, Douglas J, Opel and Benjamin Wilfond, Erik Parens, Gregory E. Kaebnick, and Alice Dreger. As a group, these papers present a nuanced view of the issues involved in not just the Ashley X case but the conundrums that doctors encounter when dealing with ethical issues in medicine.

5. I have saved the most controversial reference for last. Mysteries and Questions Surrounding the Ashley Case. This blog maintained by the anonymous hua hima is explosive, the information it contains subject to intense debate. I do not agree with a good bit of what is written but it has forced me to think about the Ashley X case in a way I never would have done.

In spite of the fact two years has passed, I think more questions than answers have resulted from the Ashley X case. All attempts to settle the debate associated with the Ashley Treatment have failed. Here I include the 2007 Washington Protection & Advocacy System (WPAS) publicly released report and the two symposiums held by Seattle Children's Hospital. Based on my reading and thoughts I cannot get past two fundamental issues.

First, I am deeply troubled by the actions of Ashley X parents as well as the possible influence their social and financial position played a part in the decision making process. In the 2007 symposium several doctors commented that when they heard about what was being suggested they were appalled but after Ashley X father met with the hospital ethics committee virtually all involved changed their mind. Like Alice Dreger who was a presenter at the 2007 symposium, I think this sort of radical change in thinking is inherently problematic. In thinking about this I do not question that the doctors involved were trying to anything more than help Ashley X. However, I don't think they spent much if any time thinking about the larger implications of what they were going do. Surely having an influential and perhaps powerful and wealthy parent determined to get what he wanted influenced them. In part this is why I am so uncomfortable with how some involved have in the words of Erik Parens "made an uneasy peace with cases where a competent person, after a process of truly informed decision making, either refuses or requests a medical intervention to cope with a social problem". Parens acknowledges the situation is far more complicated when a child like Ashley X is involved and that "there is no good alternative to respecting parents' truly informed decisions. They are better situated than anyone else to grasp what is best for their child and family". Well, I for one beg to differ for a host of reasons foremost among them that this viewpoint ignores the legal conclusions reached by the WPAS.

Second, and most importantly, I cannot overlook the fact only one group of people are being considered for growth attenuation and the bundle of procedures called the Ashley Treatment-cognitively and physically disable children. What does this say about American society? To quote the words of my friend Steve Kuusisto at Planet of the Blind "its safe to say that the developmentally disabled are at the bottom of the caste system" a sad truth that any reasonable person cannot dispute. It is not uncommon for physicians to politely refuse to care for adults with cognitive issues and the medical treatment of such adults often fall onto the shoulders of their pediatricians. Thus it is fair to say to people with cognitive disabilities are stigmatized by within the medical establishment. It is exactly this group of professional that seeks to justify surgical intervention and the use of high dose estrogen to attenuate the growth of the children that are stigmatized in society and within medicine. The rationale used by Ashley X parents was dubious at best and whether it was explicit or not bigotry against cognitively disabled adults played a role. If you doubt this, since when do physicians surgically alter children to make caring for them easier? The answer to this is obvious--it is not done--unless of course one has the power, prestige, and drive to push doctors to do something they must come to an uneasy peace with. In short, I think the doctors and ethics committee took the easy way out--they refused to make a hard decision that would have upset two parents that love their daughter thereby proving that they were human and as prone to error as any other person.

To return to my original question--can common ground be found? I think this is possible. First, doctors can admit they made a mistake and acknowledge that the so called Ashley Treatment is at minimum ethically questionable and was not medically necessary. Second, disability rights activists can tone down the rhetoric and use past abuses of disabled people as a means of educating doctors and the general public about why disability rights and civil rights are identical issues. We people with disabilities must get other people to understand one can be disabled and proud, that disability is part of our human identity.

Tuesday, February 3, 2009

Assisted Suicide: Misconceptions Abound

Yesterday, February 2, Steve Drake at Not Yet Dead wrote a reaction to an article about assisted suicide that appeared in the New Statesman. The article subject to debate was written by Victoria Brignell whose writing is usually thought provoking. Her article "Assisted Suicide" was surprising to me because she appears to accept many of the misconceptions associated with assisted suicide. I need not repeat Steve Drake's astute observations made on his blog about what Brignell got wrong foremost among them quality of life issues and personal autonomy.

What I want to address is the questions Brignell posed with regard to assisted suicide and social change. Brignell points out that social practices evolve quickly and wonders "Could we reach a point where it is regarded as normal for a tetraplegic [quadriplegia] person to commit suicide? And as the population ages and pressure on social care services grow, could the authorities regard legalising assisted death for severely disabled people as a convenient means of reducing the demand on an increasingly tight care budget? It seems unlikely such a dystopian vision will turn into reality in the near future". Brignell's assessment may be correct in the UK but I think we have already arrived at this dystopian vision in the United States and elsewhere.

A thriving business of death exists in the Netherlands. Dignitas, the controversial suicide clinic, is seeking to expand its market in spite of the fact it is under investigation for illegally profiting from deaths it has facilitated. Oregon and Washington have assisted suicide laws in place. New Hampshire is seeking to rewrite its laws to facilitate assisted suicide under the guise of redefining what a terminal illness is. Multiple studies have demonstrated beyond a shadow of doubt that the people that seek out assisted suicide are not terminally ill. But this is not what one reads in the newspapers and is a fact that assisted suicide activists avoid discussing. The result is that the average person is stunned or at least I hope they are when they learn about Daniel James parents taking their son to Dignitas to commit suicide. Paralysis is something I know a lot about having been paralyzed for over 30 years. If I have learned one thing, it is that it takes time, family support, and interactions with other people that have a disability before one realizes that paralysis is nothing more than a forced change in the direction one's life will take. What is much harder to accept is the social stigma associated with paralysis and the significant expense associated with using a wheelchair. This is another thing I know far too much about and I consider myself lucky to have been paralyzed in 1978 and not 2008. The world I knew in 1978 was simple. When I was paralyzed newly disabled people had lengthy rehabilitation stays. In retrospect I am not sure it was medically necessary to spend months and months in a rehab facility. What I learned in those months had little to do with my medical care. Instead I learned that I had entered a rabbit hole like Alice in Wonderland. The world as I knew walking was a very different place now that I used a wheelchair. My life, my civil rights no longer had the same value they once did. I was suddenly a quasi human and considered my self lucky to be alive. I heard whispers and comments about how my quality of life and expectations must now be limited. I heard about others who were in some ways better off than me--I was told this directly. You see back then high level quadriplegics were not perceived to be worth treating and allowed to die. My parents forcefully rejected these ideas. They did this with vigor, anger and love. Their position was highly unusual at the time and I learned how to assert my rights within days of being paralyzed.

Fast forward 30 years and a new reality exists. The love my parents showed me has morphed into people like Daniel James parents. They loved their son. They knew he was, to use their words, a second class citizen. Because they loved him so much they gave him access to Dignitas where he would take his own life. This is not what my parents had in mind when they talked and fought for access. No one lauds people like my parents who like many others that support the life of people with disabilities. In fact, such people are often characterized as difficult and selfish because wheelchair access is thought to be something we should get to choose to do. In contrast, the reaction to James' parents is overwhelming. They are paragons of virtue, selfless parents that put the wishes of their child before their own. This is exactly why assisted suicide is such a threat to the most vulnerable people: elderly, physically and cognitively disabled people. A judgment is being made, one in which the lives of some people is perceived to be less valuable. Sure lets make assisted suicide legal for the terminally ill. But are not all humans terminal? Exactly who is terminally ill? How is this determined and do the definitions differ. They sure do and everyone knows stories about a person that was told they had six months to live and are still alive and well years later. Thus we need to provide support and compassion to those that are vulnerable, those whose life is viewed as somehow less. This effort is what makes life and humans so unique. In the name of compassion we are killing people young and old alike in the Netherlands and in the states of Washington and Oregon. This is not compassion I learned about through my parents. What is needed is not assisted suicide but appropriate social services for people like Daniel James and his parents. This is not too much to ask but it is costly in terms of time and resources when compared with assisted suicide. I for one would not be here had my parents not chosen to support me in those first hard months of paralysis and spurred me on. This is the sort of parental love and social action I hope to pass on to my son and is a life lesson all should learn. Simply put, assisted suicide is a cheap solution to a much larger problem that can be solved if we value the solution.