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Friday, December 7, 2007

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

Thursday, December 6, 2007

NYT on Death and Disability

I read a very long article in the Sunday NYT Magazine section entitled "A Death in the Family". Much of what the author, Daniel Bergner, wrote about that touched upon disability I found offensive at multiple levels. The article in question is about Booth Gardner who was a two term governor of the state of Washington during the late 1980s and early 1990s. It has been 14 years since Gardner was in office and he now has Parkinson's disease. His "last campaign" is a single minded effort to get an expansive death with dignity bill passed Washington.

When I first read Bergner's article I was angry--how could the NYT publish such a well written piece of crap. I know, as do many others, that the NYT is more often than not antagonistic to disability rights but Bergner's article takes this to an entirely different level. I am not sure who I dislike more--the NYT, Bergner, or Gardner. I cannot dissect the NYT antagonism to disability rights but I can state with certainty that Bergner and Gardner have out of control and over sized egos.

I found Gardner a tragic figure but not for the reasons Bergner wrote about. Gardner seems to me to be an an ego maniac who is unable to live without a spotlight on himself. Bergner detail Gardner's disfunctional family life and his quest to pass a death with dignity law speaks volumes about the author and subject but little about the central issues involved in the right to die debate. Let me be explicit: Gardner's quest is not about control, "my life, my death, my control" as he puts it. If this was his aim there is nothing that can stop him except for himself. There is simply no basis in reality that assisted suicide is about self autonomy or control as Gardner puts it. If one is determined they can empower themselves and end their own life or seek out help--and if the person in question is terminally ill and makes a serious request I doubt many physicians would deny their request. Death with dignity laws are simply not needed and discriminatory--it is just to easy to target those society does not value foremost among them the elderly and disabled.

What Bergner's article does is cater to Gardner's quest for the spot light and reader's prurient interest in end of life decisions. But the sub-text, and it not very subtle at all, is an overwhelmingly negative view of aging and disability. Here is Bergner's description of Parkinson's: it "isn't terminal. The disease can leave the body trembling, contorted, rigid; it can rob the memory and muffle the voice; it can leave a person silent; but it doesn't offer an end to its torture". This passage and many others like it are gratuitous and not necessary. They are also damning and question why anyone would ever want to live with a disability. Is it not easier to just help the elderly, infirm, and disabled die?

After some reflection, I feel sorry for Gardner and Bergner. Gardner just cannot accept he will never be the center of attention again--that his time for the spotlight has come and gone. I also wonder to what extent he is being used by others to advance and expand the death with dignity laws. As for Bergner, I was stunned and saddened when he admitted that his father has Parkinson disease. I was stunned because there is one fine passage in the article. I was sad because his father's condition seems to prevent him from seeing his father as often as he might wish. It is as though he is afraid of his father with whom I suspect he once had a good relationship. Bergner writes that although he "lives close by, I visit him too briefly, too infrequently." He also struggled to tell his father about the article. It is in the same paragraph that I found one excellent passage: "I had been scared that the mere fact of the subject being broached between us would lower barriers--within him, within me; against suicide, against a quiet kind of patricide--barriers whose existence I didn't even want to think about, because to acknowledge them would be to confront the impulses they guard against". This leads me to wonder is Bergner afraid his father will ask him for help committing suicide or does he want to see his father to take his own life? I suspect Bergner does not want to see his father suffer and wants an easy way out--he does not want himself and other "sons and daughters like me" to "confront so much decrepitude and mortality, the realities that keep my visits too brief and too infrequent".

In conclusion, Bergner's article is self serving and sad. It has far more to do with his own cowardly behavior and refusal to accept his father's condition than it does death with dignity. It also reminded me why, in retrospect, I feel good about myself and the way I was able to be there for my own father after he had had a major stroke. Despite the fact seeing him and his impaired condition was profoundly depressing at times I was able to support him as much as possible and hope I made his last few months as meaningful as possible.

Friday, November 16, 2007

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.

Tuesday, November 13, 2007

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.

Tuesday, October 23, 2007

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.

Thursday, October 18, 2007

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.

Tuesday, October 16, 2007

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.

Thursday, October 11, 2007

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.

Tuesday, October 9, 2007

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.

Thursday, October 4, 2007

Why Focus on Cure?

There were many things I never understood about Christopher Reeve after he was paralyzed. Foremost among them his intense and singular focus on cure. His vow to walk again was hardly unusual as many make the same pronouncement after a traumatic injury. In 2002 I was severely critical of Reeve in an essay that appeared in the Ragged Edge--"Wishing for Kryptonite". I maintained that Reeve's overwhelming interest in cure was highly unusual--that virtually no one has ever been willing to devote all their time and money in an effort to be cured. A newspaper article in the local paper, "Portchester Woman Happy with Progress after Chinese Spinal Surgery" makes me wonder if my views about cure are correct (

In the above article, Christan Zaccagnino who lives just 30 minutes away from me, went to Beijing where she underwent spinal surgery. If Ms. Zaccagnino had been paralyzed within the last two or three years, I would not be surprised by her decision to search out a cure for her paralysis. However, Ms. Zaccagnino was paralyzed 14 years ago in a diving accident when she was 10 years old. Given this, I cannot begin to understand her thought process. Undoubtedly she was aware that the neurosurgeon who operated on her, Hongyun Huang, treatement is not just controversial but has no documented success rate. American neurologists strongly advise patients against the invasive procedure because some people had serious complications such as meningtis. This did not stop Ms. Zaccagnino from traveling to China or raising $30,000 needed for the surgery through fund raisers. According to the article, Ms. Zaccagnino is not alone--400 other paralyzed people have made a similar journey and undergone what appears to be a high risk procedure.

It would be easy for me to be critical of Ms. Zaccagnino and her strong religious convictions--she refused to have cells from aborted human fetuses implanted by Dr. Huang as is the norm in the preocdure she underwent. Like Reeve who also underwent questionable medical proceedures, the gains for Ms. Zaccagnino's were minimal. This leads me to ask, why take such a chance? Is walking really that important? Based on my life experience, walking is highly over rated. Humans are amazingly adaptable and there is very little I cannot do. So why have 400 people traveled to Beijing to be cured? I think such individuals are self absorbed narcissists. It is far easier to accept dominate socio cultural norms about disability than it is to rail against injustices and fight for equal rights. It is easy to sit around (pun intended) and pray for a cure than it is to go out into the world and get a job. It is easy to thoughtlessly use ramps and elevators disability activists fought decades for. It is easy to go to college and not think about the men and women who had to fight for the right to be educated in the 1970s. It is too easy to forget about people like Ed Roberts or Justin Dart. It is easy to just accept the ADA exists however weak it may now be without considering what it was like to prior to 1990.

If I have learned one thing in the last 30 years I have been paralyzed it is that being disabled is social problem. The real obstacles are not architectural but social. How else can one explain why 66% of Americans with a disability are unemployed and do not have access to adequate health insurance. Do not get me wrong, I am not against a cure for paralysis. This is a lofty goal. Perhaps I too am a narcissist for my goal is for paralyzed people to be equal to their fellow humans who are bipedal. This is in my best interests. For me, civil rights are more important than walking.

Friday, September 14, 2007

Revelation for the NYT Dining Critic

New York is a hard city. It is an even harder city when a person who uses a wheelchair wants to dine out. Althought the New York Times dining critics include brief reference to wheelchair access, I have learned not to rely on this information. Most people who use a wheelchair and dine out know they are too often directed to the worst table in the dining room. Getting to and navigating within a dining room can also be a challenge. As for accessible bathrooms, that is a pipe dream. This is hardly ground breaking news but for the NYT critic, Frank Bruni, it is. In a recent column, When Accessibility Isn't Hospitality ( he is amazed to discover that even though he asked about access for his reviews he "didn't appreciate the obstacles people without full mobility face until I dined with one of them". No wonder I don't trust the NYT.

It was nice of Mr. Bruni to dine out "with one of them". Aside from the demeaning choice of words, Mr. Bruni seems to have discovered what I and most people who use a wheelchair already know--there is giant gulf between what is perceived to be accessible and reality. The barriers encountered are architectural--even 17 years after the ADA was passed--and attitudinal. For example, if a dining room is accessed by a wheelchair lift I will routinely encounter one of the following problems: the lift will be broken, the power turned off, the key used to operate it missing or the lift itself filled with trash or used as a storage closet. I have also learned that many restaraunts have what I call the "cripple table"--the one table where all people who use a wheelchair are directd to. Generally this table is in a corner and as far away from others diners as possible.

What Mr Bruni and his temporarily disabled friend with whom he dined fail to realize is that the ADA is not just about wheelchair lifts, elevators, and accessible bathrooms. The ADA is civil rights legislation first and foremost. Access is not provided because businesses want to be accessible out of the goodneess of their heart but rather due to the fact it is the law. Diners who use a wheelchair have the same rights as those that walk in the door--and those rights are violated on a daily basis. The violation of these rights are not, as Mr. Bruni writes, relatively minor inconveniences. Such "inconveniences" are illegal. Why is it okay to "inconvenience" a person who uses a wheelchair but socially unacceptable to make all black people sit in a particular area? Segregation eneded a long time ago for blacks but remains socially acceptable for crippled people. As for Mr. Bruni's temporarily disabled dinner guest, she too does not understand the meaning of access as required by the ADA. If she had a glimmer of understanding, she would not have carried a 12 pound fiberglass ramp with her to get into restaurants with a step or two. In carrying this ramp she is accepting a subserviant social status and sending a very bad message--access is an individual person's problem. Businesses need not be accessible, it is their problem not mine.

I appreciate Mr. Bruni's effort to understand the inherent problems diners who use a wheelchair encounter. I think he would be well served, pun intended, if he dined regularly with a person such as myself who has used a wheelchair for over thirty years. Like others who have thought long and hard about the inequities associated with using a wheelchair, I pereceive the ADA as it should be--ground breaking civil rights legislation. When businesses, restaurants and ordinary indviduals such as Mr. Bruni come to this realization, perhaps I will be able to dine out like any other bipedal person.

Tuesday, September 11, 2007

Fear of Hospitals

I am afraid of being admitted to a hospital. I am not afraid of getting sick but rather worry about how I will be treated once I am admitted to a hospital. Caring for one's paralyzed body is not difficult but there are certain things such as skin care that require more vigilence. If hospitalized I may need help and being dependent upon nursing care is risky proposition. Today, even the most dedicated nurses cannot possibly provide the sort of treatment they would like to provide. Hospitals are run like a business and crippled people are a bad investment. Crippled people may require more care. Even worse, crippled people are thought to be complicated, that is their care and medical history is involved and will force medical personnel to spend more time with them. When these variables are combined with the belief that the life of a crippled person may not be as valuable as that of another person who can walk my level of concern rises exponentially.

My friend who is a physician's assistant thinks my concerns about being hospitalized are unfounded. I hope she is correct because it has been a bad year for crippled people who enter the hospital. This thought struck me today when I read Disability Studies at Temple University blog (disstud.blogspot) about the death of Linda Sue Brown. As reported in the LA Times, after Ms. Brown died her sisters were stunned by what they discovered--consent forms were forged and the care she received was questionable at best. I for one am not surprised that Ms. Brown received poor treatment, was subjected to what appears to have been risky surgery--a hysterectomy. The fact is Ms. Brown did not have the cognitive skills to consent to surgery but that did not stop surgeons from operating on her. This story reminds me of the Ashley Treatment I wrote about earlier this year for Counter Punch. Both Ms. Brown and Ashley were subjected to surgery that violated their rights as patients. Both families were involved--in Ashley's Case her parents consented to the removal of her uterus, breast buds, appendix and spleen as part of what they identified as the "Ashley Treatment". In Ms. Brown's case her sisters questioned the treatment she received and after months of investigation inspectors concluded the hospital failed to provide appropriate care.

The issues involved in the care and treatment of Ashley and Ms. Brown are quite different. But what links them is the violation of their rights. Both had loving families, were admitted to a hospital, and were subjected to surgery that was not legal. Why did these hospitals fail to protect their rights? What does this failure say about the treatment and cutural perception of crippled people? In my estiamtion, these cases highlight that the medical establishment does not value the life of crippled people. Hospitals and surgeons are more likely to perform risky surgery on crippled people because they think they are in desperate need of repair. What are the consequences of these actions? Not much, the hospitals in question receive bad publicity and no one is held legally accountable. Patients, even crippled ones, have rights and it well past time hospitals were made aware of that fact. I for one plan on memorizing a Patients Bill of Rights before driving to any hospital.

A New Beginning

I have started this blog for a number of reasons. First, I want to prove to my son Tom that I may not quite be as stupid as he thinks I am. Second, I want to comment on disability related topics I see in the news that have a skewed perpective. Third, I am impressed with disability related blogs and want to add my views with regard to the social implications of disability. Fourth, I want to my name and work to become more public so when my book, Bad Cripple: A Protest from an Invisible Man, is published next year it will sell, sell, sell.