ER Time Warp

First aired in 1994, the one hour drama ER was an innovative TV show. Initially it was thought to be a bit too gory and filled with needless medical jargon. Within a short period of time the show became a major hit for NBC. In my view, its success was built on the ethical and personal dilemmas the cast and characters in specific episodes encountered. I don't know when or even why but somewhere along the line ER deteriorated into nothing more than your average soap opera--though a well written and had a cast of attractive men and women. Of course the doctors remain handsome and heroic and the nurses pretty and dedicted.

I only watch the show once in a while and saw the latest eprisode last night--11/15/07. By the end of the hour, I was ready to throw a rock through the TV I was so angry. Last night's ER epsisode was typical soap opera fodder and I had no intention of watching the entire show until one of the episode characters turned out to be a paraplegic father. Wow, I thought, this is great. Mainstream TV will demonstrate the barriers disabled parents face when caring for their children. I could not have been more wrong for the ER writers took a step back in time--way back in time to demonstrate that crippled people are angry. Not exactly ground breaking material. Why are crippled people angry? Because they cannot walk and hate what happened to them and are tortured by their disability. When watching the show it reminded me of an old expression that was once common--"crippled disposition"--that is, crippled people are miserable because they are crippled. This is dead wrong. I get angry, as do other cripples, but it has nothing to do with my inability to walk. Crippled people get angry because they are treated poorly and their civil rights are violated on a regular basis. This was never raised.

ER writer must have missed the last twenty years of disability rights. The plot line was simple and had potential. The paraplegic character is the father of an early teenage boy who enters the ER with a serious injury. Doctors ask him how he got hurt and his reply was "cleaning out the gutters". After doctors and nurses exchange glance the boy quicly explains his father is a paraplegic and his father could get in the ambulance. What is the focus here? What the father cannot do and implies way too much responsibility is placed ont he child. When the father appears he is angry, confrontational and bitter about what happened to him when he was injured. Of course all this is revealed in a overly dramatic way. I need not bore readers with further plot line developments--they are all bad and convoluted.

The gross misconception of the paralyzed father character was summed up in one line. During a heart to heart talk after his son is saved during surgery the man states that "anger is my base line". This is not a bad line--in fact it could have used to effectively show the myriad of social barriers crippled parents encounter. ER writers could have demonstrated how crippled parents competence is often questioned by strangers and medical personnel. But no, the writers of ER accepted an antiquated perception of disability and furthered the stereotype of the angry cripple. This was a missed opportunity.

Unfortunately my son missed this episode--he went to bed after the New York Ranger game--and I wonder what he would have thought. I suspect he would have pointed out he has never been asked to clean out the gutters or do any other such chore not ordinarily assigned to a kid. However, I will confess he is the man when it comes to changing light bulbs in our house.

Hospital Settings and the Lack of Rights

This weekend my son added to his growing collection of stitches. On Friday afternoon I received a call from the school nurse that I needed to pick him up ASAP because he had just cut himself and would need stitches to close the laceration. I left home immediately and had no trouble finding the nurses office--I simply followed the blood trail my son left behind him. After a few minutes the nurse walked me and my son to our car and wished us well. Within 20 minutes we arrived at the local ER. This is all very ordinary--that is until we entered the hospital. The first person we met was the triage nurse who directed each and every question to my son and seemed perplexed by my presence. In a questioning tone she asked "You are his father?" Yes I answered and after she took a quick look at my son's wound we were directed to the waiting room. The next person we met looked equally perplexed and asked "Who is the patient?" This was decidedly odd given the fact my son had a fresh bandage wrapped around his hand. Then he too asked "Are you his father?" Again I answered yes and this reply really confused him. This man then asked "So, you are his parent and legal guardian?" I realized then that the question was directed to my son and a patern quickly developed. Each person we spoke to asked me if I was the father and then proceeded to ignore me.

While in the ER my son was asked questions that should have been directed to me--like "what is the name of your insurance carrier?" No child knows the answer to this question nor should they be expected to. Very quickly I realized I was perceived to be somehow less human--not sentient. My ability to parent was openly questioned as was my competence. I have no doubt most of those I met felt bad for my son--the poor kid needs stitches and needs to care for his crippled father. Not once did it dawn on those working in the ER that I could be good parent.

Over the last few days my experience has led me to wonder if other disabled parents have had similar problems--this was not the first time my ability to care for my son has been called into question by strangers. The trip to the ER also made me think about the problems disabled people encounter when they try to direct their own health care choices (see a recent post on Gimp Parade). This weekend reinforced my deep concern about what will happen to me when I get sick. Will some doctor assume my life has less value because I cannot walk? If so, am I going to receive substandard care. The sad fact is that many in the medical community preceive disabled people to be failures. This perception can affect medical care and I for one am deeply worried when I am hospitalized. I worry first about my rights as a human and secondly about the care I will receive.

Body Art: Braille Tattoo

Aside from my interest in disability studies, I have done research about body art and modification. The two fields have many connections: for instance, people with disabilites and those who have chosen to modify their body in a non-traditional way can encounter stigma and animosity. People who have chosen to modify their bodies intrigue me--what is it that drove them to get a tattoo, a piercing, or non traditional body modification? Just as there is a wide range of disabilities, there is an equally diverse population interested in body modification.

The link between these two seemingly disparate groups was blurred when I read about a student, Klara Jirkova, at the University of Arts, Berlin, who came up with the idea of Braille Tattoos. Jirkova noted that the purpose of body art was not only to decorate but was meant to be read or interpreted by society. In an attempt to empower blind people to have meaningful body alteration Jorkova created Braille Tattoos. Not really a tattoo but a subdermal implant, this could be placed anywhere on the body. For example, a subdermal implant could be placed between the thumb and index finger that would be felt when two people shook hands. This could be read by a blind person.

Subdermal implants are not new but the term Braille Tattoo is certainly unique. I am not quite sure what to make of this. The idea is creative--a spin on existing and well established body art. I do not like the term Braille Tattoo--perhaps this is a matter of translation from German to English that has resulted in an odd phrasing. However, my dislike for the phrase is over ridden by a new use for an existing form of body modication.

Transhumanist Accusations

George Dvorsky has written extensively about science and technology. He is on the Board of Directors of the Institute for Ethics and Emerging Technologies and co-founder of the Toronto Transhumanist Association. Much of what he writes I disagree with--especially what he wrote about the Ashley Treatment earlier this year. Here I refer to his contention that Ashley X existence was grotesque because she had the mind of a baby inside the body of a full grown and fertile woman. Dvorsky's dehumanizing view of Ashley X led to the belief that mental age and body size were somehow connected.

Based on my previous posts and published articles about the Ashley Treatment, I obviously diagree with Dvorsky. Yet I was stunned by his most recent comments about the Ashley Treatment and the death of Daniel Gunther. On October 11 in Sentient Development, Dvorsky's blog, he noted that one person posted a comment on a MSNBC message board that maintained the Ashley Treatment was offensive and perverse. This view, Divorsky wrote, was seconded by disability rights groups, a fact that was "particularly upsetting for me, not just beause I supported Gunther during the controvery, but because of the possibility that his suicide was wrought by the undue pressure exacted on him by overzealous and vocal disability groups".

The above accusation is nothing short of gross. It has no basis in fact--Gunther's family maintans the Ashley X Case had nothing to do with his death (they point to a prolonged struggle with depression). To blame disability rights activists for Gunther's death is an exploitative smear tactic. Dvorsky's reasoning dimminshes Gunther's life to be about one case when I am sure it was far richer and diverse--a fact the family can affirm and to whom my heart goes out to.

Ashley X and Katie Thorpe and a Cultural Divide

The debate surrounding the removal of Katie Thorpe' uterus has entered week two in the UK. Newspapers such as the Guardian, Independent, Daily Mail, and the BBC News have all published articles. Based on my reading about the case in a different country three thousand miles away I am struck by three things:

First, the mainstream British media, like their brethren in this country, do not understand disability rights. If they did, someone would have pointed out the obvious: it is not acceptable to modify and mutilate Katie's body. Katie has rights and her mother is requesting her daughter undergo a major surgical procedure that is not medically necessary. Like all people her age, Katie has the right to grow up with her body left intact. Alison Thorpe knows this as do the doctors willing to perform the surgery. Thus this case raises deeply troubling medical ethics foremost among them trying to use a surgical procedure to solve a problem that is social. As noted by Andy Rickell of Scope, an advocacy organization for people with cerebal palsy in the New Statesman on October 9 that "we do not believe that a child should be modified for society's convenience, but instead that society needs to adapt and become more inclusive of disabled people".

Second, Katie's mother has given a number of interviews and her choice of words leaves much to be desired. For example in the Daily Mail October 12 story "The humbling true story of why this mother wants her disabled daughter to have her womb removed" she commented that "there is no doubt it would have been better for Katie if she had died at birth". Alison also said she felt as though "looking after a disabled child is like serving a life sentence". Comments such as these are offensive and degrading to Katie Thorpe and show a stunning lack of awareness with regard to the rights of disabled people.

Third, articles about Katie Thorpe focus on her care and the degree to which her mother's life is not just compromised but consumed by endless drudgery. Katie's mother, Alison, and her partner, Peter, are Katie's primary care givers. Alison Thorpe has revealed intimate details about her daughter's life and exactly what is involved. The portrait painted is not pretty. There is no question Alison Thorpe is dedicated to her child and overwhelmed by her needs. However, I am struck by what I see as a major disconnect: the problems involved in Katie Thorpe's care are not medical. Surgery will prevent Katie from menstruating but I do not see how this will make caring for her any easier. Katie will continue to need care at all times and surgery will not change this fact. The problem Katie's mother has is a lack of support. Why has she not slept though the night for the last 15 years? Why has she been left alone to care for her daughte? What does this lack of support say about society and the degree to which the lives of disabled people are valued? No parent should speculate that it would have been better if their child died a birth--this is a social tragedy that need not occur and I wish the correct questions and issues were being discussed.

Ashley X Story Becomes More Depressing

Daniel F. Gunther, physician at Children's Hospital in Seattle and primary proponent of the Ashley Treatment, committed suicide. As reported in the Seattle Times today, the family believes a history of depression was the reason for the suicide. Colleagues and family members said the Ashley Treatment had nothing to do with his decision to end his life. According to colleague Dr. Doug Diekema, he considered Gunther to be "a hero for standing up for families" and "without whose courage, confidence, knowledge, open-mindedness and unwavering support the [Ashley] Treatment woud not have been realized"

Like many others I was severely critical of the Ashley Treatment, Gunther and Doug Diekema. In spite of my criticism, I am deeply sorry to learn about Gunther's death. My heart goes out to his family, friends and colleagues. I was also sorry to learn that Gunther was subjected to harrassment when the Ashley Treatment became a media sensation. It is one thing to disagree but something else entirely to harrass a fellow human.

I remain adamently opposed to the Ashley Treatment. For me, Gunther's death highlights the overwhelmingly depressing nature of the Ashley Treatment. I wish his family well and offer them my condolences.

Ashley Treatment Again?

I wrote about the Ashley Treatment in January and May for Counter Punch. Like many other people with a disability I was shocked and outraged that doctors would remove the uterus, appendix, spleen, and breast buds buds of a disabled girl. I was somewhat encouraged when the so called "Ashley Treatment" and the sterilization of Ashley X was declared unlawful by the Washington Protection and Advocacy System (WPAS). Surely no doctor would contemplate such an invasive, unnecessary, and ethically questionable treatment. Based on what was abuzz on the internet via parenting and disability rights blogs for many months this year no parent of a disabled girl would request the Ashley Treatment. I am quite wrong on both fronts. To this I can add the mainsteam media appears to be oblivious of the multitude of complaints disability rights activists have posted and acted upon on both sides of the Atlantic Ocean.

According to the UK Timesonline October 7 Alison Thorpe, mother of Katie, "a victim of severe cerebal palsy" has requested doctors "remove her womb" and appendix. To this end, Ms. Thorpe has consulted with Phil Roberts, a consultant at St. Johns Hospital in Chelsford, Esssex. Doctors are now consulting with lawyers to determine if they can sterilize Ms. Thorpe's daughter. Mainstream media outlets in the US failed to understand the broader implications of the Ashley Treatment and it appears the press in the UK is not better. The UK Times noted "the treatment would not be carried out on able bodied people" and that "even some disabled campaigners are critical of them" This sort of reporting is not just bad it borders on offensive. British and American disability rights activists were extremely critical and remain adamently opposed to the Ashley Treatment. Don't take my word for it, look it up on the internet and see for yourself.

I maintain the Ashley Treatment is one of the grossest violations of human rights. Katie's mother uses the same warped logic that Ashley's parents did to enable and empower them to mutilate their daughter. It is as though these parents think a person with a profound physical and mental disability never existed before. Happily unaware and hopelessly selfish, they have sought out a medical solution to a problem that is entirely social. The fact is disabled people are perceived to be less human and valued. What happens when parents of disabled children are critiqued? They mainstain critics have no conception of what it is like to care for disabled chidren. Give me a break. Perhaps parents that are considering the Ashley Treatment or those that think it is an appropriate course of action consider disabled people, all diabled people, are human. We crippled humans have rights even if we cannot articulate them. Just because one cannot see, hear, speak, or walk does not place us in a different sub-human category.

In the coming days I will eagerly follow what disability rights activists have to say. They need to act without delay as the institutional bias against the rights of disabled people are constantly being eroded away. One need only consider the sad state of the ADA and the way the Supreme Court in this country has narrrowed the law to the point of irrelevance. I sincerely hope my peers in the UK, especially the Disabled People's Movement, fare better. At least this time, there is a chance that a girl will not be subjected to needless surgery.