Assisted Suicide: Some Get the Inherent Dangers

One blog I faithfully read is Not Yet Dead Yet. Founded in 1996 I have learned to respect the work of Stephen Drake and Diane Coleman. While I do not always like the tone or tenor of Not Dead Yet advocacy, I never question the factual basis upon which they base their views. I have often found gems on the their blog and yesterday was a perfect example. Last week Not Dead Yet noted that the Connecticut Office of Protection and Advocacy for Persons with Disabilities (OPA) had filed a motion to intervene in the Connecticut assisted suicide case Blick v. Division of Criminal Justice. Not Dead Yet provided a link and long quotes from the affidavit of James D. McGaughey, Executive Director of the Connecticut of the OPA. For those that want to read the entire affidavit please visit Not Dead Yet. I would just like to stress and quote one part of what Mr. McGaughey wrote in large part because it reinforces what I believe are the dangers of disability and assisted suicide.

To quote Mr. McGaughey: "During my service at the Office of Protection and Advocacy for Persons with Disabilities, the agency has represented individuals with significant disabilities who faced the prospect of, or actually experienced discriminatory denial of beneficial, life-sustaining medical treatment. In most such cases physicians or others involved in treatment decisions did not understand or appreciate the prospects of people with disabilities to live good quality lives, and their decisions and recommendations sometimes reflected confusion concerning the distinction between terminal illness and disability. In a number of those cases, despite the fact that the individuals with disabilities were not dying, decisions had been made to institute Do Not Resuscitate orders, to withhold or withdraw nutrition and hydration, to withhold or withdraw medication or to not pursue various beneficial medical procedures. In my experience, people with significant disabilities are at risk of having presumptions about the quality of their lives influence the way medical providers, including physicians, respond to them. "

Presumptions about the quality of life for people with a disability abound and none of them are good or remotely positive. These presumptions are based on ignorance. The result is prejudice is common place and the medical establishment is far from immune from bigotry. I know this for a fact as I have often encountered institutionalized bigotry in the medical setting. This can take many forms from inaccessible examination rooms to attitudinal barriers. I never cease to be shocked when this takes place but know it pales in comparison to what others with a disability have experienced. Not Dead Yet will write about some of these cases and experiences in the days to follow. I for one look forward to what promises to be grim but important reading.

Fear of the Medical Industrial Complex

In spite of the newly enacted health care reform bill I believe our health care system remains hopelessly fragmented. In my estimation most Americans figure into one of two groups: those with and those without adequate health insurance. Exceptions exist, myself for example. I have health insurance, hospitalization only, that does not do me or my wallet much good when I get sick. Yet I consider myself lucky to have inadequate insurance because most paralyzed people I know have no insurance. The reasons for this is simple: health insurance companies consider people with a disability to be a poor or costly investment. The stigma and obstacles accessing health care for people with a disability does not end with insurance. Like it or not, within a medical setting people with a disability, especially those that use a wheelchair, symbolically represent failure or the limits of medical science. Doctors, nurses, therapists and all those dedicated to healing people do not like to be reminded of such limitations or failures. This belief is not directly addressed and festers below the surface of many interactions I have had. The negative perception of disability also affects the sort of health care people with a disability receive. When one thinks about serious or life threatening illness most people assume everything will be done to save their life and every possible procedure will be performed. For many this is a given. I do not share this belief. I have a very different set of worries: I worry I will not be treated. I worry I will be allowed to die--to end my suffering. The fact is my life is not valued--it is thought by many to be some a tragedy and that I have endured and suffered. If seriously ill why pull out all or any of the stops for such a person. This is not science, supposedly objective, but opinion--a deadly opinion. To me this proof that medical science deems some lives worth living while others lack value.

Surely this bad cripple is being paranoid. Sorry but I think not. Why just the other day I was out to lunch and the person I was eating with went to the rest room. The person at the table next to where I was sitting leaned over and handed me a business card. He stated "if you ever want to pray for a cure and end your suffering give me call". While this encounter was not an ordinary experience it highlights the fact many people think death is preferable to disability. I have been told countless times "I could never accept using a wheelchair" or "I would rather die than be paralyzed". The prevalence of this belief is far more common than I would like to think much less accept. This thought has been at the forefront of my mind in part because of my encounter at lunch mentioned above. But I was inspired to write about my concerns after reading an interview with Michael de Ridder, head of the emergency ward at Berlin Hospital and author of a new book on dying in Spiegal. In Ridder's estimation death has become complex, people are needlessly suffering, and patients should be allowed to die with greater dignity. Ridder states that a doctors primary mandate is to heal but "to allow someone to die well is equally important in terms of ethics". In Ridder's estimation doctors are not well equipped to handle the ethical conundrums they often face when dealing with end of life issues. Thus Ridder believes we need a concept for the treatment of "hopeless cases". What I wonder is exactly a "hopeless case"? According to Ridder decisions on hopeless case can be on empirical grounds. That may make Ridder feel like a highly ethical being but such logic scares me. Worse yet, is an example Ridder provides. Over a year and a half Ridder got to know a patient very well. The person in question, a woman, was "a brilliant scientist, who since an accident two years ago, has been paralyzed from the head down and is completely without feeling. She wanted the artificial respiration shut off but she was refused, as this is clearly illegal. She was literally reproached for being the only patient in the ward who didn't want to live. She is breathing on her own again. But she says that she can't touch anyone anymore, she can't do her work anymore, she can't even lift a pebble. She doesn't want to live like this. Mind you, it's a life that wouldn't even exist without advanced medical procedures and it's one that she can no longer end on her own. In that situation, I can't exactly order that the woman should be turned so-and-so-many times a day, that she be fed and that she should lie there for another 40 years, just because we have the technological know-how and want to satisfy our ethical standards."

Ridder may think he is basing his views on empirical observations but in my estimation a value judgement is being made. The life of the woman discussed is not worth living. The fact that the overwhelming majority of people faced with the same situation choose to live is conveniently ignored. Compassion and care has been perverted. Ethics has been stood on its head in the guise of physician assisted suicide. At issue is not how to live but how to die. And this line of thought that is sweeping health care here and abroad scares my crippled ass. What happens to the next paralyzed person who comes under the care of Ridder or another physician that holds similar thoughts. Will such a patient be treated equally? In a word, no. Will I be treated equally when I enter a hospital with a serious illness? Sadly, I think not. I know I will have to fight for my rights and assert myself. Now this is an ethical violation worth discussing. It is also against that pesky law known as the ADA.

Money, Money, Money: Problems Abound

In contrast to the vast majority of people with a disability, I have a degree of financial stability. Having a PhD from an Ivy League school certainly helps though my area of specialization, anthropology, is dying a slow painful death. While I worry about money, I am keenly aware I am lucky--very lucky. I own my own home, car, and more often then not have an adequate amount of work. I am concerned with the cost of my health care but know if I needed significant financial support my family would be supportive. This allows me to sleep at night yet I still worry. I don't worry about myself (too much). I worry about all the other paralyzed people without jobs, health care, education, and the financial resources needed to makes ends meet. Last night as I fell asleep I began to wonder how do other paralyzed people do it. I have been paralyzed for 30 years and began to think about how much I have spent on paralysis related products and services. My first thought was about my Roho Cushion. They cost about $350 and last two years. I have probably owned 25 to 30 of these cushions as they often do not last as long as advertised. The next biggest expense would be urological related. This includes catheters, tests and regular check ups with the urologist, antibiotics, etc. Add in wheelchair costs which are not too bad given the fact I farm out such work to anyone but a durable medical goods company and I shudder to think of the overall cost of my paralysis.

Am I complaining? You bet I am. But what makes the above worse for many is the inability to find adequate employment. And in this country no work means no health insurance. In this case, two strikes and you are out as in out of your home and into a nursing home. Scary thoughts and a fate I truly fear. I have been thinking along these grim lines since I read about what an abysmal job the Federal Government is doing at hiring people with a disability. According to the Federal Times, the number of Federal Employees with a disability in 1998 was 0.96% In 2007 the number was down to 0.92% In 2006 the entire Federal Government, that monster that dominates American lives, hired a whopping 1,300 new employees with disabilities but almost 2,100 employees with a disability left that year. I cannot help but speculate that the private sector hires even fewer people with a disability. Think about it this way: 12% of Americans between the age of 16 and 64 have a disability. Does any reader think even 10% of the work force in this country has a disability. Not a chance. I would think the employment number is quite like that of the Federal Government--less than 1% This is a national disgrace that is destroying lives. We Americans define ourselves by what we do. If you ever want to end a conversation with a person you barely know tell them you are unemployed. The respect factor is non existent. What bothers me the most is why? Why are people with a disability absent from the work force. Everyone I know with a disability wants to work. Many cannot find work. Some have given up. The result is personal devastation and the spiral downward is shockingly fast when you figure in the cost of being paralyzed.

Each year I teach I ask students at the end of the term how many paralyzed professors they have ever had. To date, not a single student has ever come across a paralyzed professor before me. This invisibility is a huge issue--we do not as a culture associate people with a disability as being professors, doctors, lawyers, business men or women, etc. That is we do not think of people with a disability as being productive members of society. i.e. workers. Thus disability is seen as a problem, one that must be solved. Disability is a problem but one that is social. Disability is very real social and practical problem that keeps people with a disability from entering the labor force. Start with a lack of mass transportation and housing then throw in the refusal to make basic accommodations at the work place. The result is rampant unemployment, a problem that has not changed in thirty years. Sure we have lots of laws but those laws cannot force the social change required to really empower people with a disability. For that to happen we need a social revolution, one I hope to see.

Three Dangerous Letters: UTI

I have been medically stable for three decades. Common sense dictates I see a urologist on a yearly basis to insure no problems arise--kidney disease and bladder cancer is common among paraplegics and not always symptomatic. I have been very lucky--luck based on the fact with family support I can afford to see the urologist regularly. I have had precious few urinary tract infections, UTIs, the bane of most paraplegics, and have not had a single serious issue with my kidneys or bladder. All this changed last summer and has reached a peak in the last month with another and serious UTI. This is why my posts have been less frequent--I am sick often. UTIs are debilitating and at this point costly. How costly is a UTI? A urine analysis and culture is $150. Anti-biotics for a week range from $50 to $160 depending upon what the bacteria is sensitive to. An office visit is $165. In short, I spend between $300 and $400 every time I get a UTI. Not a dime is covered by insurance. This makes no sense to me given the fact if I had to be hospitalized for the same problem I would be completely covered. But my expenses do not end with anti-biotics and office visits. Renal ultra sounds are required as are many other tests--again none of this is covered by insurance. To reiterate: I truly am lucky--I have the family support and experience to access excellent health care. I have been followed by the same urologist who is not only a kind and compassionate man but known within his field as "the rock star of urologists". Sure I am worried about myself--it seems highly likely surgery is in my near future. My prognosis is excellent and I have no doubt that I will be myself in a matter of months. But what keeps me up at night are those that do not have the family support I enjoy. I also worry about those with poor access to appropriate health care. Being paralyzed is different and there are certain risks associated with paralysis such as kidney disease already mentioned. Does you average paralyzed person have access to a physician with the prerequisite knowledge? For a few people like me, the answer is yes. However, I would venture to guess most paralyzed people needlessly suffer from problems that need not arise.

Given my recent problems, I have been thinking a lot about the health care reform bill passed by the House and signed by President Obama. Selfishly, I hope in 2014 I will have access to good health insurance. This hope however is a microscopic in comparison to the implications of health care reform for those denied access to basic health care. And who is denied access to adequate health care? The most needy among us: the underemployed, unemployed, and disabled. That denial is both subtle and grievous. For those of us with pre-existing conditions it means health care premiums that are beyond our means. For other people that need an electric wheelchair, often costing upward of $25,000, they are forced to settle for an inferior model that compromises their life and independence. Have we heard such stories in the media? In a word, no. In place of debate we have vicious political rhetoric--think of the declarations espoused by the Tea Party about death panels and the government takeover of health care. Lost in the hysteria is that real people are suffering and emergency rooms nation wide are too often used for basic health care. Change is desperately needed. I have no idea what the health care reform bill will do but I do know the existing system is hopelessly broken. Well, broken to about half the population without access to health insurance and people like me--costly people insurance companies hate.

What we need to do is far more complex than change the law as it relates to health care. Thus the health care reform bill is just the first baby step toward changing our health care system. What is desperately needed is to change the cultural perception of medicine, insurance, and health care. Health care must be thought of as a right we all share. This right comes with responsibilities such as caring for one's self to the best of your ability. The medical establishment must put the patient ahead of profit thereby instilling humanism in medicine that has been lost. Insurance companies must learn to make a profit keeping people well instead of profiting from illness alone. For instance, it make no sense that blood pressure medication is so expensive people cannot afford it and hence run the risk of stroke, extended hospitalization and rehabilitation. Let me be even more self directed. I have been hospitalized once in the last 30 years for a complication directly related to my paralysis. This was possible because I took care of myself--and all those expenses came directly out of my own pocket. Yet here I sit without adequate health insurance because I am deemed high risk. This makes no sense and highlights why we need to radically change the way we think about health care and by extension disability. There is historical precedent for such change. The ADA was passed almost 20 years ago. Prior to the ADA being enacted into law it was perfectly legal to deny a person with a disability access to a public education. Unemployment was rampant and many people with a disability, myself included, were called names, mocked, and jeered at. I remember this sort of vilification vividly and it is a thing of the past for the most part. In part people with a disability were isolated and stigmatized because they were feared. In much the same way many Americans fear what the health care bill will do. I do not share these fears as it caters to the lowest element of humanity. The medical industrial complex does not want change and through its lobbyist have created a hysteria among the population. If you doubt this just watch CNN for an afternoon. Fear mongering leads people to look for someone to blame and who is the easiest target? Why expensive people such as those that have a disability and represent a drain on the system. This is why the health care reform bill is but one tiny step in the right direction. Hopefully in time it will change the way we perceive health care and those that access the health care system. I for one look forward to the day when I can go to a hospital and not fear my life will be deemed less valuable or my care too costly. Sadly, I sincerely doubt I will live to see this day.

Disability Rights and Opposition to Legalizing Assisted Suicide

Yesterday I was delighted to read Stephen Drake's latest blog entry at Not dead Yet entitled "Ann Neumann and Vancouver Sun: Dissing Disability Activists Opposition to Euthanasia". I am a self described bad cripple but I am not one prone to polemics. I leave this to others as my aim is to change people's preconceived notions about disability. My goal is not easy and I shy away from engaging people like Neumann whose writing I find infuriating. Thus I was delighted to read Drake's post and effective skewering of her take on disability rights and assisted suicide. In my opinion Neumann states many interesting things but always seem to take a wrong turn in her analyses. She acknowledges the rights of disabled people and supports their efforts to gain equality. Yet when it comes to opposition to assisted suicide, as an advocate, she takes disability rights activists to task. Two passage below from her blog the Other Spoon should suffice as examples.

Example 1: In "A Look at Disability Rights in North America" Neumann comments on a "hit and miss" article in the Vancouver Sun:

In this increasingly bitter debate, disabled activists claim legalizing assisted suicide would be an ethical "slippery slope" that would lead to all disabled people, no matter the degree of their impairment, being devalued as human beings.
In turn, advocates for assisted suicide maintain the arguments of disabled-rights activists are a misplaced over-reaction to their proposals.

Example 2: In "Jill Stanek and Not Dead Yet Shake Their Fingers at Me, I Respond" Neumann writes:

Giving a mentally-sound, terminal patient with less than six the right to a lethal prescription that they may or may not choose to take when death approaches has nothing to do with the disabled community. Again, I sympathize with the fear and vulnerability the disabled community feels toward the medical industry, the state, and society. But conflating two separate issues is just bad advocacy. With a little (understandable) paranoia thrown in

As for the first example, I have news for Neumann: if I have learned anything in the last thirty years of using a wheelchair it is that all people with a disability are not valued to some degree. There is no slippery slope involved. Just ask any paralyzed person or anyone with a disability. Better yet go to a school board meeting and listen to one and all cluck about the need for equal access and then vote down the need for that expensive elevator or lift on the school bus. There is no over reaction here . Indeed, if disability activists are guilty of anything I would argue we are too passive. We need to be more vigorous in asserting our inalienable rights as citizens.

As for the second example, I doubt Neumann goes through the same mental gymnastics or experience the fear people with a disability do when they go to the doctors office or hospital. Perhaps Neumann can appreciate the difference between the terminally ill and disabled but I assure you most people, doctors included, do not. How else do I explain comments made to me such as "I would be rather be dead than use a wheelchair" or "Are you sure you wish to receive medical treatment" or "How longe have you suffered paralysis?" A clear message is being sent and it is not positive. Indeed, it is deadly and with the right spin can be lethal in some circumstances. My existence is open to question, my life less valuable. This is not paranoia but rather a social fact. Somehow I doubt anyone has openly questioned the value of Nuemann's existence or asked her if she really wished to receive medical treatment. Frankly I do not want Nuemann's sympathy or anyone else's for that matter. What I want is support; support for my civil rights. That support starts at the beginning, middle and end of life. I have not had that support from anyone aside from my family, friends and doctor or two. What an indictment on society. How can something as unimportant as the ability to walk have such profound social consequences. Worse yet when I assert my rights I get called "paranoid" by people like Nuemann with a political goal--the legalization of assisted suicide. This is depressing to me and I sincerely doubt I can sway the views of people such as Nuemann. Hence this why I write more about disability rights than the politics of assisted suicide.

Disability Culture and the Lack of Social Progress

Last month I read an interesting post at the NextStep blog written by Ethan Ellis entitled "Disability: A Culture? A Community? A Political Force?" (February 25). Ellis's post and position have kept me thinking about the existence of disability culture and its importance. Unlike Ellis and many others I think disability culture exists. In fact I would argue a vibrant disability culture is thriving in this country. So why was I not surprised to read that Ellis does not believe disability culture exists. He wrote "people with disabilities are too diverse to form a culture We're geographically dispersed; we don't speak a common language--heck we can't even agree on what to call ourselves; more than half of us get our disabilities in old age and 87% of us became disabled in adulthood." Ellis is hardly alone and has prestigious company in rejecting the notion disability culture exists. For instance in 1999 Supreme Court Justice Ruth Ginsberg wrote "In no sensible way can one rank the large number of diverse individuals with correctable disabilities as a discrete and insular minority." I have but one word for Justice Ginsberg: bull!

I suspect it is commonly accepted that a disability culture does not exist. Part of the reason for this assumption is our inability to precisely define culture. Ask 100 people to define culture and you are likely to get 100 different definitions. Most would agree culture is important and I would maintain it is one of the founding ideas of the social sciences. I was drawn to anthropology in large part because they took culture and its importance seriously. The word itself looms large in anthropological literature. We anthropologists write about cultural traits, cultural complexes, cultural evolution, culture types, culture areas, cultural diffusion, cultural migrations, cultural decay, cultural convergence, etc. In spite of a rich and diverse literature devoted to the concept of culture there is no universal agreement on a single definition of culture. This is both a problem and strength of the discipline and gets me back to disability culture. If we take a traditional view of disability culture, that is compare it to other minority groups such as black Americans we will not measure up. There are no impoverished disability neighborhoods, ethnic foods associated with disability, music, or schools dominated by our presence. Simply put people with a disability do not conform to accepted notions associated with minority groups with a recognized history. But this does not mean disability culture is a myth. I think we people with a disability share a collective cultural identity. By extension then I would argue a disability culture exists. Collective political identification has been a major factor in passing legislation designed to empower people with disabilities for the last 40 years. This collective political identification took place for complex reasons foremost among them self identification and definition. Being disabled in American society is a profoundly different experience. For many, our disability becomes a part of our identity and cannot be separated from the disability experience. Part of the disability experience is social injustice. Barriers are common place today, both social and architectural. Equal access does not exist. Unemployment is rampant. Transportation and housing are grossly unequal. Demeaning beliefs about the impact disability has on one's life remain the norm. This does not mean I feel a kinship with every person with a disability. However, as my mentor Robert Murphy wrote long ago in the Body Silent that "the most lasting benefits of any struggle against perceived oppression are not the tangible gains but the transformation of consciousness of the combatants". This is exactly how I perceive myself--a combatant. It is the other people with a disability that are combatants that form the core of disability culture. We fight less for ourselves than we do for those unable or unwilling to fight for themselves. We fight the good fight, the lonely never ending fight for equality. Such a fight winds us few friends. I know this all too well as I am hardly popular for asserting my rights and pointing out gross injustices.

What I find infuriating is the lack of value placed on inclusion today. Sure we have laws that mandate access but those laws are often ignored and certainly not valued. We do nothing more than than pay lip service to inclusion. Far more time is spent trying to figure out how to legally avoid inclusion than come up with creative ways to be inclusive. People who are different, that is those that cannot walk or do not think and learn at a prescribed rate are a "problem" or worse, "special". This implies we have a choice as to be inclusive or not. How do we justify such exclusionary practices? Here are my top ten reasons:

The ADA is not followed or ignored.
There is no obvious benefit to inclusion.
Accessibility is a technical problem.
Disability is something people do not want to think about or simply fear.
Access is already accomplished.
Disabled are not part of mainstream society.
Accessibility is not cool or ugly.
No disabled people complain or are seen.
Access requires involvement and engagement with disabled people.
There is no “Martin Luther King” of disabled people.

Without a vibrant disability culture I do not think real social progress can be made. We need disability culture to become a legitimate and powerful force at the local, state and federal level. We need to be a presence at all levels to become part of a national dialogue. We are on the cusp of creating such a national dialogue. We are reaching a critical mass of people many whom are like me angry about the social inequities I face every day. The trick is to channel that anger, use it to our benefit and mercilessly point out the gross social injustices that exist. When we do this we will do the hardest thing possible--change the nation's ideology in terms of disability. When this happens I will consider myself equal to all those that walk past me daily.

Baby Isaiah Dies

Various news outlets are reporting that Baby Isaiah died yesterday in his parents arms. I wrote about Bay Isaiah and the larger implications of the case. Baby Isaiah death was announced by Rosanna Saccomani, lawyer for the parents who read a prepared statement. The news of Baby Isaiah death came hours before the court was expected to hear testimony from Dr. Richard Taylor, a neonatal specialist that examined the infant. Dr. Taylor told CBS News that he agreed with earlier assessments that there was no brain function. In his estimation "there have been no cases in the literature or, as far as I am aware, of a child who has had this degree of injury to the brain ever recovering to any sort of meaningful extent". I cannot dispute this nor can I speculate on what sort of life Baby Isaiah may or may not have had. What I can comment on is that the life of those with profound cognitive and physical deficits are not valued. That goes for both Canada and the United States. By extension, the lives of other people that are deemed abnormal are also somehow diminished. Those whose lives are not valued or diminished include a wide variety of people, myself included. My existence is not valued because I use a wheelchair. People remind me of this every day. Why just today I was told I was "inspiring because I shop for groceries like anyone else". Gee, thanks. Obviously the expectations for my life, the degree to which it is meaningful to use Dr. Taylor's word is severely limited. I beg to differ in spite of the fact this assessment is made by many that see me during the course of a day. Again, I have no idea if the decision made by the parents was right or wrong. I do know my heart goes out to them. However, I worry about the other babies like Isaiah that do not have parents as willing to fight for the life of their child. What happens to other children whose existence is deemed marginal, their life somehow lacking in meaning? This thought keeps me up at night for two reasons: first, selfishly I wonder if some doctor will decide I have suffered enough and allow me die thereby ending my miserable existence. Second, exactly how do we determine whose life is worth living and whose life is not. I don't think I will sleep well tonight with these thoughts rattling around my brain.