A Reset Button for People with a Disability

A few days ago, November 12 to be precise, Stephen Kuusisto wrote a brief but fascinating post, Dusting Your Brains: A Disability Rant, on his blog Planet of the Blind. He wondered if there is a control, alt, delete reset for the human brain when confronted with inane social interactions. Kuusisto related a story about being at an airport and being told he had to use a wheelchair because "it is the rule". Ask any person with a disability and they can regale you with a host of entertaining stories. Airports are great fodder for ignorance and illogical so called rules. For instance, once in a while I am asked by airline personnel "can't you walk just a little bit". Ignorance and inappropriate social interaction is not limited to the airport. I have been accosted in just about every social setting one can imagine. Once I was screamed at for block after block in New York City by a homeless man who was convinced I was the "Anti-Christ". Health care professionals also have a penchant for saying remarkably inappropriate things. When my son was a little boy a physician told me "people like you should not have children". He said this in an emergency room while he was stitching up a cut on my son's finger. Gee, thanks for sharing.

Kuusisto wrote that people in disability land need to have a good relationship with their reset button. On this point, I could not agree more. When confronted and disrespected by the hordes of bipedal people that surround me daily I get angry. My anger burns a whole in my gut. I cannot let things go and replay in my mind over and over a negative interaction. I wonder could I have done something to avoid the person that demeaned me. But one sensation more than any other burns bright-- anger. Here I sit 34 years post paralysis and  22 years post ADA and yet ignorance abounds. Social and needless architectural barriers remain common place. Worse yet, my reset button is not working well. I have been avoiding social interaction. I have been going out at odd times when I know few people will be milling about. In part I am hesitant to go out because we are the verge of the holiday season. All that supposed good cheer is freely shared. I saw the Salvation Army guy last night ringing his bell. I hate those fucking bells and pushy Salvation Army bell ringers. What sticks in my craw though is the false good cheer and panic to buy stuff. Black Friday is gross, materialism at its worst. In terms of disability the holiday season is oppressive. A charity model of disability springs to the forefront of the minds of people that know nothing about disability. All of a sudden everyone wants to help me. Everyone smiles at me. Old ladies pat the top of my head and tell me I am a good boy. When I get gas people want to help me put my wheelchair back in the car.  The offers of assistance come fast and furious. None of them are sincere. Well, actually that is incorrect. Many years ago I was with my son a few days before Christmas. We were driving into New York City to see an all too rare afternoon NY Rangers hockey game at Madison Square Garden. On the drive into the city I got a flat tire. Amazingly I got the flat next to a highway gas station. I pulled into the small parking lot thankful I was not on the side of the road. I open the trunk, pull out the jack and the spare tire. I am about to work on loosening the lug nuts when a young man taps me on the shoulder and asks me if I need help. I am indecisive, unsure to say yes until the man's girlfriend says he is a mechanic. Cool. The young man helps me out and changed the tire in world record time. I reach into my wallet to give him some cash. He says no thanks. I tell him come on buy your girlfriend some flowers. I get a more emphatic no. My son suddenly chimes in "Dad you don't need to give him money. Santa is watching and he is going to be way impressed. They are going to make out like bandits on Christmas for helping us". When I am ready to give up on humanity I think of this story, take a deep breathe and hope my reset button will work better tomorrow.

Massachusetts Votes No on Question 2

In Massachusetts Question 2 was defeated. Question 2 was a death with dignity initiative modeled after the laws in Washington and Oregon. As little as a month ago it looked like the legislation would be passed into law. One poll maintained 68% of people were in favor and only 19% opposed.  Compassion and Choices, formerly the Hemlock Society, put their full weight and power in advocating for “death with dignity” in Massachusetts. The defeat of Question 2 was a great victory for two disability rights groups; Not Dead Yet and Second Thoughts. I tip my hate to Steve Drake and Diane Coleman of Not Dead Yet and John Kelly of Second Thoughts. Lest I mislead readers, a diverse coalition of groups led to the defeat of Question 2.  High praise though goes to one man—John Kelly—who I have not met. He worked tirelessly in the months leading up to the election. He came across as reasoned and articulate even when confronted with questionable views that had no basis in fact. I urge readers to listen to Kelly debate Marcia Angell on NPR All Things Considered. See link: http://radioboston.wbur.org/2012/09/18/question-two-death-dignity
http://www.necn.com/pages/video?PID=PPdLmLW_D_7kVBQhMh8nkZDs0ChuVVaj
Kelly was understandably thrilled with the election results. He stated:

This vote confirms that Massachusetts voters saw through the rhetoric and outright misinformation put out by those supporting assisted suicide.  Opposition to assisted suicide cuts across all partisan and ideological groups because the more people learn about the issue, the more they have second thoughts. Assisted suicide doesn't expand choice, it limits choice – and that puts at risk anyone living with a disability, mental illness or serious illness.

It is my sincere hope that not only will President Obama seize upon the election results but disability rights groups will do so as well. The opportunity is laid before us to marginalize the conservative right wing and hopefully eliminate  groups such as the Tea Party. This is an opportunity Obama must seize. We in disability rights must do our part as well. In Massachusetts for one of the first times in recent memory, if ever, the general public was exposed to a disability rights perspective. In part, this was because we were galvanized in our opposition to Question 2 and other death with dignity laws. The facts are on our side—scratch the surface, do some reading and it becomes clear—assisted suicide legislation is inherently dangerous and more to the point not necessary. Do not be swayed by sob stories the mainstream media hypes about people dying in agony. People die poorly because we do not discuss end of life issues.  If it were up to me Ira Byock’s The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life would be required reading for all Americans.

I do not dispute the fact many people die badly. However, Compassion and Choices sales pitch—we have the right to die is nothing more than a meaningless slogan. Proponents of assisted suicide want to control not death but its methodology. They state repeatedly that we should control how and when we die. This is deceptively simple. Of course we should have such control! Not so fast. Why do people want to die? People die because they do not want to lose their dignity. People want to remain independent. People fear losing control of bodily functions. People fear medical bankruptcy. All these fears have solutions and in most cases the problem is less physiological and more social. With proper social supports people can retain their autonomy and dignity. With proper medication, people need not suffer from pain. 

Do we really want to enter a world in which people such as Barbara Wagner are denied chemotherapy for late stage lung cancer in Oregon (it would have cost $4,000 a month and was not approved for her condition)? In its place the Oregon Health Care Plan office was willing to cover a lethal prescription. When it comes to the intersection of medical costs, personal experience, and concerns about vulnerability, it behooves us to listen to people with a disability. Proponents of assisted suicide dismiss our concerns and quickly point out there is no record of abuse in Oregon and Washington. Worse yet they think disability rights groups are pawns of the Catholic Church. Abuse is not reported because ending the life of an elderly, terminally ill or disabled person can and often is perceived as an act of compassion. It is rarely if ever considered a crime. This is a significant problem as the line between life and death is razor thin and easily manipulated. Social factors figure in prominently. I urge people to read a story recently published in Health Affairs by David Muller, “Physician-Assisted Death is Illegal in Most States, So My Patient Made Another Choice”. See link: http://content.healthaffairs.org/content/31/10/2343.full This article scared me and made me realize yet again how dangerous accessing health care can be for vulnerable populations. Muller’s article was deceptive and illustrated that the line between a “hastened death” and “assisted suicide” is subjective in the extreme. When I first read Muller’s article I was stunned. My first thought was the elderly man he cared for was murdered. Yes, I thought the article depicted a clear case of murder. Muller was directly responsible for a patient’s death. In another post I will deconstruct Muller’s article. There is only one point of agreement between myself and Muller. He wrote: an enormous gap exists between the thoughts many of us will have about aid in dying when we are hopelessly or terminally ill and our willingness to discuss those thoughts with a doctor. The reasons for that gap include the enormous social stigma surrounding death and dying, the fear of being labeled “suicidal” or “cowardly,” and the fear of alienating or disappointing one’s family members or physician. I do not question a gap exists between patients and physicians. I do not question the fact we fail to discuss end of life issues. I do however question why Muller chose not to mention fear. Vulnerable people rightly fear not only physicians but the health care system itself that is hostile to our existence. A hostility Muller is utterly unaware of I suspect. We people who are members of vulnerable populations are often an expensive drain on limited resources. We may have a limited life expectancy or our existence itself may be deemed “incompatible with life”.  But we have rights, civil rights than cannot and should not be violated.  

An Interesting Ten Days

The last two weeks have been interesting to say the least. Hurricane Sandy devastated much of the New York City area, especially coastal areas. The images and lives lost is nothing short of a shock. I faired very well. Truth be told, I abandoned ship and headed east and north. I stayed with a close friend for a week. I returned home to no power and luckily no damage to my home. I did lose many trees and consider myself extremely lucky. In my area Sandy was much worse than last year's freak Halloween snowstorm. We lost power for about the same length of time but the number of trees that came down last week was nothing short of amazing. I can only imagine what the storm sounded like when huge trees were ripped from their roots and came down with great force.

With my power restored I was able to watch the election. I was fascinated and nervous. I was deeply concerned Romney might win. I will confess when I saw the early results with Romney ahead I was freaking out. By midnight it was clear Obama had won and I went to bed a happy man. I was happy not just because Obama won but rather that the extremists that dominate Republican and conservative politics lost. We need conservatives in this nation; I do not question this fact. But conservatives today are frightening people. As I see it, conservatives want to undermine the separation of Church and State. They want to ban abortion and set back women's rights sixty years. They are anti-science, anti-education, anti-health care reform, anti-gay…Many do not believe global warming exists. Conservatives, as I perceive them, are punitive. The sort of rugged individualism they try to sell is grossly misleading and caters to the lowest common denominator. As I wrote in my last post, none of us are ever truly independent. There are times when a person will need social supports. There is a reason we have a social safety net designed to protect people when they are vulnerable. Conservatives want to destroy that social safety net. Conservatives decry "big government". And in part they have a point--our Federal government is indeed a giant bureaucracy and far from efficient. Despite its flaws, and there are many, we need a Federal government. We need FEMA for instance. Consider what Sandy did last week. NYSEG, my local power utility, has had three extended outages in the last 18 months. Do not tell me NYSEG, owned by global energy corporation Iberdola, and serves 2.4 million customers in New York could not do a better job at restoring power. Corporations are designed to do one thing well, make money. Corporations may be made up of hard working and good people but corporations exist to make a profit. Given this indisputable fact, we need the Federal government to establish regulations that will force a company like NYSEG to have the ability to restore power in a timely manner. We need a Federal Government to force corporations to look past profit margins.  We also need a Federal Government to protect our civil rights. Hence I was struck by the closing of Obama's speech when he said:

I believe we can build on the progress we’ve made and continue to fight for new jobs and new opportunity and new security for the middle class. I believe we can keep the promise of our founders, the idea that if you’re willing to work hard, it doesn’t matter who you are or where you come from or what you look like or where you love. It doesn’t matter whether you’re black or white or Hispanic or Asian or Native American or young or old or rich or poor, able, disabled, gay or straight, you can make it here in America if you’re willing to try. I believe we can seize this future together because we are not as divided as our politics suggests.

I take exception to just one line above. We are in fact divided as a nation. The extreme disparity in the distribution of wealth nation wide is disturbing. Fewer and fewer realize their dreams no matter how hard they work. The great divide between rich and poor plays out in a myriad of ways. For example, years ago I saw an eye doctor I liked very much. Nan Hayworth was a good doctor and treated me with the utmost respect when I had my yearly examination. I suspected we got along because we had children similar ages and lived near one another. Hayworth retired at some point and life moved on. Fast forward to 2010 and I saw her name the local newspaper described as a “moderate Republican”. Hayworth was one of 41 conservative Republicans swept into Congress (she was embraced by the Tea Party). I read about her views and was appalled. How I wondered could she have treated me with such respect in her office yet hold views I found repugnant. Hayworth was no “moderate” Republican. She is a radical conservative in bed with Tea Party extremists. In Congress she tried to cut Amtrak funding by 50% She wanted to end Federal regulation of big business and supported fracking. She was staunchly opposed to health care reform. While I could go on suffice it to say Hayworth’s views are appalling to me. I suppose this is what happens when one loses touch with what ordinary lives are like. This can happen when one has amassed individual wealth in the range of $10 to $20 million dollars. More to the point however electing a class of people to Congress, the wealthy upper class, has consequences. Dissecting Hayworth’s positions is beyond the scope of this post. What is of interest to me is the ideology behind her views.  Simply put, we do not exist on the same economic plane. Hayworth’s daily life is grossly distant from mine. The same can be said for most people elected to Congress and the Senate. These elected officials are a class apart. They do not represent their constituents. Until this changes I see no reason why the divide between rich and poor will narrow.

Rather than end on a gloomy note, I find it delightful that the election was profoundly influenced by black, Hispanic, and women voters. Polling data reveals Obama got 75% of the Latino vote, 73% of the Asian American vote, and 93% of the black vote, and 66% of the women vote. I hope conservative Republicans note this demographic shift. I will confess to feeling more than a little happy Nan Hayworth lost. Better yet she lost to an openly gay man, Sean Patrick Maloney, who she accused of being a carpetbagger. Hayworth lost because her ideology failed to resonate and I hope is the start of a national trend.

Assisted Suicide in Canada and a Question

In the last two weeks I have spent much of my time thinking about assisted suicide. In part this is the residual side affect of attending the American Society of Bioethics and Humanities conference (see my previous post). Another variable is the assisted suicide bill that will be voted on in Massachusetts. The confluence of these two events has made me retrospective; hence I have been thinking much about autonomy and independence. We Americans place great value on autonomy independence, myself included. Prior to 2010 I was fully autonomous and fiercely independent. I truly believe I was the master of my own destiny. I bought into this hook line and sinker. Autonomy was a given, it required no thought. When I was bed bound I mourned my loss of autonomy (I was truly miserable) but at no point did I think about what autonomous meant. In 2010 I would have said autonomy is obvious--autonomy is being fully in control of your life. That is maintaining the ability to work, care for routine daily needs, and have a functional home or place to live. I would likely have added disability highlights the interconnections between people and that no one is truly autonomous. Autonomy can also be achieved in many different ways and take on a myriad of forms.

When I was seriously ill I instantly realized autonomy was highly valued. I read the Patient Bill of Rights when hospitalized. I heard all about patient centered care though I never saw it in action. I was told strict confidentiality laws existed and protected me. I was shown what an advanced directive looks like and was encouraged to discuss this with loved ones. Not once did I hear the word autonomy. Looking back I cannot help but wonder why no one addressed autonomy. I know it was at the forefront of my mind. I have come to the conclusion that the typical person when accessing health care is willing to begrudgingly accept a short term loss of autonomy. However, for a person with a disability the loss of any autonomy is significant concern--if not fear. I suspect that fear is directly related to the belief that an identity tied to disability is assumed to be less. Less in this instance is dependence. If one is not independent one loses a degree of autonomy and respect. In a health care setting this lack of respect can be deadly. When respect is absent it is all too easy to make categorical decisions for others--these others need not even be present. These thoughts have been coursing through my brain this week as I read the most recent appeal in the Carter case in Canada. Here I refer to the court of appeal October 22, 2012 between Carter and the Attorney General of Canada, file number CA040079. In section seven of this document I came across a startling acronym: LAWYER. Apparently in the Netherlands compliance with assisted suicide legislation is improving but not yet at an ideal ten years after becoming law. This is hardly a surprise but what stunned me was that studies have revealed many cases of  LAWYER exist: Life-ending acts without explicit request. You have to love the irony in the acronym LAWYER.

I am very curious if others have heard of the acronym LAWYER. I am especially interested in any comments from a person living in the Netherlands. Such acronyms reveal that language matters. The well funded Compassion and Choices is particularly good at marketing or more accurately lobbying for assisted suicide. Death with dignity sounds much better than assisted suicide. PAD is even better yet--physician aided death. PAD conjures up the image of a middle aged doctor, trim and fit, a hint of gray in his hair, and long time family physician caring for Grandma who is terminally ill. Out of the goodness of this man's heart he will ease Grandma's suffering. Her death with be peaceful and painless. She will be surrounded by loved ones. This is a great image devoid of reality. The reality is we do not get to choose how we die. We do not talk about death much to our own detriment. We do not like to talk about elder abuse. We do not want to talk about severely compromised new born infants who die because their condition was deemed incompatible with life. We do not want to talk about the financial implications of caring for a person at the end of their life--especially when choices come down to spending every last penny to support Grandma with funds that were supposed to go to help pay a grandchild's college tuition. We do not like to talk about the great health care costs associated with disability.  We do not want to talk about people who are clinically depressed. We do want talk about people with a host of metal illness that may impair their judgment about the value of their life. Dozens of other examples or more exist.

I recently came across a fascinating essay by Carolyn Ells whose work I was not familiar with. In "Lessons About Autonomy from the Experience of Disability" in Social Theory and Practice she wrote about "situated independence". Ells wrote "one is independent only within the confines of one's situation... Access to social spaces and services and empowering relationships  makes autonomy possible. In other words, situated independence is necessary to achieve the control necessary for governance".  I am drawn to the concept of self governance and more broadly how we situate and define autonomy. Many of us are obviously and traditionally autonomous. But what of others who are not traditionally autonomous agents? Can a ventilator dependent quadriplegic be autonomous? What about a person with a serious cognitive and physical deficit? What about a person with Down Syndrome? We need to entirely rethink what autonomy means and how we can respect forms of autonomy that are not typical.

I am Off to a Conference

I am heading to Washington DC today. I am giving a short presentation about the Carter Case. My focus will be on the larger ramification of a recent ruling in British Columbia. The meeting is organized by the American Society of Bioethics and Humanities. The ASBH has been kind enough to waive registration fee as it was way past my budget. I have never attended this event and am very curious about the papers to be presented and the way in which bioethicists interact. Perhaps I will be spending some time at the bar--I know this is where the real action takes place when anthropologists get together.

Below is my presentation:

Gloria Taylor had ALS, an undoubtedly devastating condition.  As Taylor lost the ability to move her body she told the press “I simply cannot understand why the law holds the able-bodied who are terminally ill are allowed to shoot themselves when they have had enough because they are able to hold a gun steady, but because my illness affects my ability to move and control my body, I cannot be allowed compassionate help to allow me to commit an equivalent act using lethal medication”.  Taylor is not the first person with a disability to make this argument.  In 1990 a Georgia court ruled that Larry MacAfee, a 38 year old quadriplegic, who was not terminally ill had the right to disconnect himself from his respirator and die. David Rivlin, also a quadriplegic, sought court intervention in his desire to die at approximately the same time. Unlike MacAfee, who changed his mind, Rivlin utilized court sanctioned assisted suicide. More recently in 2010 Dan Crews expressed a desire to die rather than be forced into a nursing home. In 2011 another quadriplegic, Christina Symanski, legally starved herself to death. The legal arguments these men and women utilized were compelling. As we have heard, Taylor argued that the provisions of the Criminal Code that prevented her from receiving assistance were inconsistent with the Canadian Charter of Rights and Freedoms that award all citizens the rights to life, liberty, personal security and equality. 

I would argue that the legal arguments presented by those people with a disability that express a desire to die share one larger and troubling cultural response: wide spread social support. These men and women are applauded in their effort to die. These people are brave!  We are eager to help these people in part because society celebrates and values personal autonomy and dignity. This is hardly an insightful observation. But it does beg the question—why do we support people with a disability that want to die? To me, the social support people with a disability receive in their effort to die via assisted suicide reveals a deeply ingrained stereotype that is not questioned. Here I refer to the fact we consistently fail to provide the necessary social supports that would empower people like Carter, MacAfee, Rivlin and Symanksi to live rich, full and productive lives.  Rather than discussing this failure the media and the court sympathetically nod their collective heads. We accept it as a given that no one would want to lose their dignity and autonomy.  Bluntly put, one is better off dead than disabled—a phrase that is used as a rally cry for disability rights activists who proudly proclaim nothing about us without us.

Of course few actually state a person with a severe disability is better off dead.  Instead we praise Justice Lynn Smith who relied on a host of scholars and experts from around the globe in rendering her opinion. For example, Peter Singer praised Smith and her decision in the Carter case noting it “could serve as a textbook on the facts, law, and ethics of assistance in dying” (Singer July 16, 20012).  Singer and others correctly observe Smith’s decision focused on at risk populations—the elderly and disabled—and concluded “the empirical evidence gathered in two jurisdictions does not support the hypothesis that physician assisted death has imposed a particular risk to socially vulnerable populations”. I could not disagree anymore. I also reject Smith’s conclusion that it is possible to design a system that permits assisted suicide and protects vulnerable populations. I object on two grounds: first, assisted suicide in a clinical setting will not be perceived as a criminal act. It will be thought of as an act of mercy. No doctor or health care professional will ever be prosecuted for assisting a person with a disability in his or her effort to die. Second, in Canada and the United States the larger bias against people with a disability carriers over and into the judicial realm. Disability theorists such as Lenny Davis (2002) have argued disabled plaintiffs are seen as narsisstic. The theory of narcissism as used by Davis reveals a central flaw of the disability rights movement: the primary problem people with a disability encounter is not a given bodily deficit, in the Carter case the inability to end one’s life, but rather society and the courts refusal to negotiate difference.  This refusal on the part of “normates” to use Rosemarie Garland-Thomsen’s awkward phrase makes requests by people like Taylor appear to be reasonable and establishes a double standard in terms of health care and end of life issues.

 Let me address my second point and the theory of narcissism. Before Taylor entered court it was assumed disability, especially one as severe as ALS, is a personal tragedy. Carter’s desire to die with or without assistance was perceived to be a reasonable response to her condition. This leap of logic is based on a very narrow definition of autonomy. Not surprisingly, the empirical evidence the court sought, specifically that the lives of people with a disability were less valued and at risk, was found to be lacking. I would counter how do you measure the value of a life and how do we define autonomy? Do we use the utilitarian logic of Peter Singer or address the literature produced by disability studies scholars who seek to broaden our understanding of life with a body well outside the norm? Smith correctly found that when dealing with end of life issues such as assisted suicide and withholding life support “a bright-line ethical distinction” was elusive.  In part an ethical distinction to borrow Smith’s words was elusive because there is a societal double standard in the way people with and without a disability are treated.  This double standard is based on a narrow perception of autonomy and calls into question why some people with a disability like Taylor want to die.  Here I think the statistics from Oregon’s Death with Dignity Act enacted in 1997 are revealing. Since 1997, 935 people have had death With Dignity Act prescriptions written and 596 people have died from ingesting the lethal medication. The most common end of life concerns have remained consistent, foremost among them: decreasing ability to participate in activities that made life enjoyable, loss of autonomy, loss of dignity, losing control of bodily functions, burden on family and friends, inadequate pain control, and the financial implications of treatment.

I am not terminally ill. Yet as a person with a disability I have felt and experienced each and every item listed. I cannot walk and have as a result lost a degree of my autonomy. There are activities I once enjoyed that I can no longer do that made my life enjoyable.  I have lost some dignity in the eyes of others. I have tenuous control of many bodily functions. I worry about being a burden to my son and extended family. I worry about the financial implications of my health care especially since I sit on a wheelchair cushion with a short life span that costs $500 and is not covered by insurance.  I have experienced severe pain that made me wish I were dead. Yet here I am deeply perplexed. Why is my existence and that of other people with a disability so easily called into question? Why does a request to die such as Taylor’s garner so much attention while budgets for social supports are slashed nation wide, cuts that are largely ignored?

I would contend that autonomy, however we define it, is fleeting, its loss hardly a tragedy. Thus I believe discussions about whether Taylor had the legal right to end her life with assistance is a smoke-screen that obscures the humanity of people with a disability. We need to keep our attention squarely focused on who wants to avail themselves of assisted suicide and why. The answer to me is obvious: people choose to die because they feel their life has no value. And whose lives do we not value--my crippled body, the elderly, terminally ill and those born with severe cognitive and physical disabilities that are deemed “incompatible with life”.  This calls into question how we define humanity. Do not be swayed by emotion. Let’s enter into a serious debate that is devoid of compassion.  This brings me back to the first point I raised—ending the life of a person with a disability, the elderly or terminally ill is unlikely to ever be considered a criminal act.  It will be perceived as an act of mercy, a compassionate and self less gesture on part of a physician. This thought keeps me up at night and makes fear accessing the health care system.

Earlier this year I wrote an essay about a chilling experience I had in the Hastings Center Report that I think calls into question the inherent dangers associated with assisted suicide.  I do not have the time to detail what happened but suffice it to say what took place was a microcosm of a much larger social problem. Simply put, my disabled body is not normal. Health care systems are well equipped to deal with normal bodies. Efficient protocols exist within institutions, and the presence of a disabled body creates havoc. Before I utter one word or am examined by a physician, it is obvious that my presence is a problem. Sitting in my wheelchair, I am a living symbol of all that can go wrong with a body and of the limits of medical science to correct it. As a result it is all too easy to consider people with disabilities as the “other”. In the words of the noted anthropologist Robert Murphy we people with a disability are “the living symbol of failure, frailty, and emasculation, a counterpoint to normality” (Murphy 1990:1-2).  This sort of symbolism is difficult to empirically demonstrate exists for Justice Smith and proponents of assisted suicide legislation. What I can tell you is that when I see a person with a disability I consider their bodily and cognitive deficits not relevant. I see a person that has adapted and survived a hostile social environment.  I do not see an objectionable body but rather a person that has thrived and if people working within the health care industry were smart they would listen to what people with a disability have to say.

David Cameron's Distasteful Political Rhetoric

David Cameron, Prime Minister of Britain, gave a speech a few days ago that reinforced why conservative politicians here and abroad are contemptible human beings.  Cameron is under fire by the opposition party and his speech on October 10 was important.  Like Sarah Palin and Rick Santorum, Cameron is a skilled at using his disabled child for political gain. During Cameron’s speech his eyes welled up with tears when he spoke about his son. On many videos of Cameron’s speech the camera moves to his wife Samantha who also had tears in her eyes. It was great political theatre. I should note here the Cameron’s eldest son was born with cerebral palsy and epilepsy. He died in 2009 when he was just six years old.  Camerson stated the highlight of his year was awarding a gold medal at the Paralympics. Cameron stated: “When I used to push my son Ivan around in his wheelchair, I always thought that some people saw the wheelchair, not the boy. Today, more people would see the boy and not the wheelchair—and that’s because of what happened here this summer”.  This is a great line and it had the desired affect. It was well crafted and supposedly deeply touching moment, proof positive Cameron really cares about people with a disability. Too bad the emotional ploy is devoid of reality. What Cameron is hoping people forget or simply will never realize is that last summer’s Paralympian heroes are today’s scroungers.

Disability rights activists were quick to respond to Cameron.  For instance, Richard Hawkes, Chief executive of SCOPE, stated Cameron was “right to recognize how the power of the Paralympics could have an impact on attitudes towards disabled people. But attitudes do not change over night and disabled people have been reporting a decline in attitudes towards them for some time”.  This polite reply will have little sway on a toxic social situation for people with a disability. What Hawkes needed to say with force is that hate crimes against people with a disability are at historic highs in Britain. The number of hate crimes against people with a disability in Britain went up 33% in 2011 according to the Association of Chief Police Officers. There is no question the significant increase in hate crimes is directly related to Cameron’s effort to slash the benefits people with a disability receive. In fact some have compared the social situation in Britain to Nazi Germany in the 1930s. Atos, the French company hired to evaluate whether people with a disability are able work, and Cameron have made it clear people with a disability that do not work are lazy scroungers. Anti disability rhetoric abounds. Do not take my word for it, read Sue Marsh work at Diary of a Benefit Scrounger.

Marsh was quoted in the Huffington Post, UK that “It’s so frustrating that this man can stand on stage and lie—downright lie- about protecting disabled people. We are faced with the biggest onslaught disabled people have ever faced”.  Marsh went so far as to call Cameron’s plans to cut benefits a form of “Compassionate Fascist Conservatism”.  See the link:http://diaryofabenefitscrounger.blogspot.co.uk/

Also see Indigo Jo Blogs. See link: http://www.blogistan.co.uk/blog/mt.php/2012/10/10/camerons-speech-appeals-to-aspirationalism#more-3709

I hope voters in this country are paying attention. If Romney wins the presidential election he will wage a war on the poor, disabled, elderly and other vulnerable population groups. It will be a campaign of historic proportions and people will die. Too extreme a viewpoint? I think not as this is already taking place in Britain. The template has been created. Hate crimes do not exist in a social vacuum. People with a disability have cleverly been identified as scroungers—people looking for a government hand out. Of course legitimate people with a disability deserve benefits but not the scroungers too lazy to work. And who makes this determination? Atos, a company hired to evaluate a disabled person’s ability to work. Atos relies on a supposedly complex computer program and 15 minute interview to make their assessment. The explicit goal is to provide the justification to cut the benefits of people with a disability. It is what they have been paid millions to do.  Thus Cameron does not utter the word scrounger. He does not acknowledge the animosity and stigmatized identity people with a disability acquired—an unwanted identity he helped create. Cameron relies purely on emotion—he gives touching speeches, lets tears well up in his eyes and has a camera pan to his wife who is equally teary eyed. One and all are touched. This man cares! His son had a disability. He knows what disabled people are like. Meanwhile there is some person with a disability navigating the London streets; an average person going about their day.  There is no compassion for this individual as a passerby will scream “scrounger” at him or her. How bad is it for people with a disability? SCOPE reports that two thirds of people with a disability that contacted them reported being abused or demeaned, often by strangers.

Reading news accounts about the onslaught on disability rights and supports in Britain is depressing. For instance, yesterday I read the government plans to discontinue the Independent Living Fund, a supplement fund that enables 19,000 people with a disability to live independently. I just shook my head in wonder. How can anyone with or without a disability not realize how dangerous these cuts are? The odds are quite good that if you live long enough disability will become a major variable in one’s life. These cuts hurt not just people with a disability but all those that will acquire a disability. In short, it is in the best interests of bipedal people to support all those with a disability who receive some sort of benefit.  I implore people to ignore the emotional rhetoric espoused by politicians like Palin, Santorum, and Cameron. They use their disabled children as political props, something I find distasteful. Think logically, analytically.  Do not be tricked by conservatives who give emotional speeches that contradict policies that directly threaten the lives of the very people they exploit.