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Saturday, November 28, 2015

Donald Trump: Disability Mocking at its Worst

Today Donald Trump tweeted: "Virtually no-one has spent more money in helping the American people with disabilities than me. Will discuss today at my speech in Sarasota". This statement almost makes me want to watch Trump talk. The key word here is almost. I loathe Trump. He is the personification of the unethical power hungry narcissistic American business man. Add in a giant ego, a wealthy background, multiple business bankruptcy, the need to be in the spot light at all times, and we have the makings of an epic run for the presidency. He is exactly what the Republican party deserves. Trump is what the American people deserve--a demagogue.  The truth for Trump is not relevant nor is reason. Trump has tapped into something that has been brewing since Richard Nixon resigned in disgrace circa 1974. The American people are angry and do not trust the government. Nationally known politicians are a class apart. Our governing body does not represent we the people. The relationship between big business and the federal government is incestuous. The system, whatever that is, is rigged. Americans pay homage to the idea we are a democracy but the reality is our country is an oligarchy. The country is run by a small number of people; the one percenters who in 2011 prompted the Occupy Wall Street protests.

Trump is exploiting the very worst of humanity. He appeals to masses of people who are understandably angry. Solutions for economic woes seem impossible. People are ground down, some lack any hope. The political machinery is not for the people but for the wealthy. Wealth disparity today is extreme. Trump is appealing because he caters to popular desires, scapegoating, and taps into our collective prejudices. Build a wall between us and Mexico. Bring back water boarding! It does not matter if it works, they (unidentified terrorists) deserve it. Ban all immigrants. Let's create a national data base for all Muslims. Let's bomb the hell out any Middle Eastern nation. Trump is at heart a modern day Howard Beal. As some will recall, Beal was the main character in the classic 1976 film who is known for the line "I'm mad as hell and I'm not going to take it anymore".

Trump's latest attack that has gained national attention was on a reporter with a disability and more generally people with a disability.  I need not detail the story. It is in all the national newspapers as is Trump's reply. Suffice it to say Trump openly mocked a news reporter. When he was criticized Trump lied. I did not mock the man (a lie). Trump claimed he did not know the man (another lie). Worse, he repeatedly referred to the "poor, poor guy". Obviously the man in question is suffering because it is assumed all people with a disability suffer (not true). Trump has also accused the man of "exploiting his disability to get attention". As one would expect, national newspapers attacked Trump. The New York Times, for example, wrote the incident in question was outrageous! How dare Trump mock and ridicule the appearance of disabled reporter.  Condemnation flooded in. Like all criticism levied at Trump this was mere water under the bridge. He tweeted "I have tremendous respect for people who are physically challenged and have spent tens of millions of dollars throughout buildings all over the world making them handicapped accessible and ADA compliant". When I read this I burst out laughing. It is not everyday a person lauds themselves for meeting the letter of the law. I will give it to Trump--he can twist reality.

What I find most interesting is the outrage expressed by the mass media. How dare Trump mock a person with a disability. Spare me the false piety. Our constructed environment is designed for bipedal people. Providing physical access for people with a disability is perceived as an onerous burden. Wheelchair access is an unfunded Federal mandate! Why do we need a ramp at a hockey rink? Why are we forced to put a wheelchair lift on a bus when there is not a single student in the district that uses a wheelchair? The list of unacceptable violations is endless. The outrage is not limited to the prototypical wheelchair logo and people such as myself a deputized member of the chrome police. People who are deaf and hard of hearing continually encounter problems with businesses and institutions that refuse to provide interpreters. Blind people who are part of a guide dog team often encounter problems when they travel. I have been told by my professorial peers that the campus is inundated with students with a so called learning disability who are not seeking a reasonable accommodation but rather scamming the system to get an advantage. The point here is Trump is far from alone in mocking people with a disability. I have been mocked more times than I care to remember. I have been the brunt of many so called jokes and derisive discussions that were wildly inappropriate.

When social media found cause to object I was curious about how common is it to mock people with a disability. A quick google search led me to hundreds of stories. Below is a random sampling that touched me.

Saturday Night live went out of the way to mock David Paterson who was the governor of New York who also happened to be blind. The SNL skits were offensive.

A video by Nicole Arbor entitled "Dear Fat People" that has been viewed over 34 million times mocked the clinically obese. It was fat shaming in a deeply hurtful style.

Pick a host of films that mock people with a disability. Most recent I recall was the Wolf of Wall Street and Tropic Thunder. But the history of films that disparage disabled people dates back to the Hunchback of Notre Dame.

Trump's book Crippled America. I cringed and immediately thought of FDR.

Niki Minaj mocked a wheelchair user in a hallway at one of her performances.

Shaquille O'Neal mocked a disabled fan's selfie.

The television program Glee. It hired a non disabled actor to play the part of a wheelchair user.  The message is not exactly subtle--there was no qualified actor in the nation to play the part.

Earlier this year an anesthesiologist was sued for mocking a man during a colonoscopy. He inadvertently recorded the procedure on his phone and was shocked by the running commentary. Once sedated, the anesthesiologist stated "after five minutes of talking in pre op I wanted to punch you in the face". The staff also discussed how to avoid seeing the patient post procedure and they placed a false diagnosis on the chart.

Finally, even the great John Lennon mocked people with a disability. Learning this bothered me more than you can imagine.

Spare me the outrage over Trump. He is merely emblematic of the rampant ableism that exists today. He is stating what others think--providing access for people with a disability is a costly waste of time. We people with a disability are an expensive drain on the economy. We are not worthy. We are not equal. We are not wanted. That is what I have learned reading disability history. To a degree I find this ironic. As a young graduate student at Columbia University I found ethnographic research among Native Americans too depressing to devote my life to studying. Oh, how I wept reading about one Native American group after another subject to genocidal policies and in some cases germ warfare (small pox infected blankets for example). This history broke my heart. Fast forward twenty years and I have a detailed knowledge of just how grim disability history is. This history tells me that we are on the cusp of significant progress in terms of disability rights. The outrage expressed by people regarding Trump is heartening. Maybe, just maybe, we people with a disability can make inroads with the masses of non disabled people that surround us. Of one thing I am sure--it is time to be confrontational via civil disobedience. Just imagine when we do disrupt ordinary life it is possible we will garner wide social support. Imagine that Mr. Trump. Perhaps it is time to mock Trump and others bigots who cater to the lowest common denominator.  It is a time of reason I hope.

Wednesday, November 25, 2015

The Disability Experience

I have been paralyzed for decades. I do not recommend the experience. I use this line when I want to reach people who know nothing about disability. It calms bipedal people and puts them at ease. I am not one of those militant angry cripples. I do not have what was once called "a cripple's disposition". My effort here is a purposeful dodge. Despite forty years of progressive legislation designed to empower people with a disability and make our lived environment barrier free most people are uncomfortable in the presence of those with an obvious disability. Mom's pull their kids away from me in the supermarket and tell their children "watch out for the wheelchair". Handicapped seating is often substandard and in the worst location in various auditoriums nation wide. It is never easy to navigate restaurant aisles. Purchasing a ticket to a sporting event requires multiple phone calls so a given venue can provide disabled patrons special service. Not a day goes by when I am not made aware of my disability. The people I know with a disability are equally aware. We know a cultural divide exists between those with and those without a disability. Bipedal people, the vast majority of them, are clueless. Most bipedal people I know would be shocked to learn a cultural divide exists. It exists because typical others don't want to know. They are content in the knowledge people are kind to the handicapped. They see little blue wheelchair logos all over the place. They see prime parking spots designated for the handicapped. They see lifts and elevators. They see ramps. They see wide bathroom stalls they love to use. What they do not see or experience is socially accepted disability based bigotry.

The culturally sanctioned divide between those with and without a disability does indeed exist. It makes the most mundane social interaction frustrating in the extreme. I was reminded of this fact when I read Dave Hingsburger post "History: A view from the Wrong Side" at Rolling Around in my Head. Link:  This man understands the cultural divide I have been forced to navigate my entire adult life. Simply put my existence is not valued. The existence of people with a disability are not valued. First and foremost bipedal people observe all the things I cannot do. Bipeds are wary of the handicapped. We are different. Our identity is spoiled. Stigma abounds. Wheelchair use is always framed as being bad. I am wheelchair bound. Oh, the tragedy! Let's not upset the handicapped. Let's treat them as special. Special equals segregation. Society does not want nor value wheelchair lifts on buses. Let's create "special" transportation in the form of substandard para-transit. The fact para-transit has never worked efficiently means little.  

My crippled brethren and I are a class apart. This does not bother me one iota. In fact I celebrate disability culture in large and small ways. I feel a connection with a mere head nod when I am in an airport and pass another person using a wheelchair. The nod is a silent signal of support. We are ready to do battle with the airline industry that despises our existence and right to fly. We cripples congregate together. For instance, we protest and celebrate. The lack of physical access angers us. The routine disregard for the ADA prompts we cripples to push back. When we assert our humanity we put our bodies on the line. We are risk takers. Like most risk takers, we needlessly die. I think about this every time I am forced into the street because a curb cut is blocked and I risk navigating around cars. When the news reports about a person who uses a wheelchair was struck and killed by a car the small head line typically reads "Wheelchair-Bound Man killed". Even in death our humanity is denied.

The cultural divide I have described is often used to discredit the views of people with a disability. When I state I fear hospitalization it is not for typical reasons. I do not fear illness, disease or painful forms of medical testing. I fear hospitalization because I am concerned my quality of life will be deemed so low a beneficent resident or physician will end my life for me. People without a disability scoff at me when I express such concerns. Ridiculous they say. It can't happen. I am deemed  hysterical or at best paranoid. This gets me back to Dave Hingsburger's observation that disability history is grim. He wrote: 

Disabled people have always been on the wrong side of history. We have been left in forests to die, we have been vilified by those who think that we are manifestations of sin, our 'final solution' though seldom acknowledged came first and genocide honed it's skills on our lives in the basement of institutions. We have been sterilized, brutalized, congregated, segregated, persecuted and destroyed. History isn't our friend.

It saddens me that the input of people with a disability is so often ignored or dismissed out of hand. When I assert that assisted suicide legislation represents a serious risk to people with a disability, the elderly, and terminally ill I am accused as having an agenda. Sorry but no. I have no agenda. I have an educated opinion based on a detailed knowledge of disability history that should be part of the discussion about assisted suicide legislation. I also grew up on various neurological wards as a child and learned a few things about how hospitals operate. I had a physician offer to end my suffering by foregoing life saving antibiotics. Like many others with a disability, I have something important others need to hear. Don't talk to me about safe guards built in to assisted suicide legislation. Don't talk to me about dignity. Don't talk to me about autonomy. Dave Hingsburger put it succinctly: I am not assured or reassured that prejudice will not be part of decision making about our lives and our deaths. I am very aware that the voice of the disability community is being purposely ignored by those who want laws that make our deaths easy to procure.

We people with a disability are the resistance. Our voices, however, are not valued. Our opinions and experiences are dismissed as anecdotal. I know this via the rolling of the eyes, the mocking gestures, the utter lack of respect, and open laughter when I state my concerns. I object to the purposeful efforts to exclude people with a disability because we supposedly miss the point of assisted suicide. The not so subtle message is we are narcissists who want others to suffer just like we do on a daily basis. The problem is I do not suffer any more or less than the typical biped. The problem is I do not trust legislators or the courts and I certainly do not think our for profit health care system has my best interests in mind. When I think about the rights of people with a disability I think of cases like Buck v. Bell and Oliver Wendell Holmes famous statement about "three generations of imbeciles are enough". I think about the ugly laws. I think about Willowbrook Institution. I think about the Nazi T4 program. Yes, times have changed. Important lessons have been learned. Yet people with a disability remain marginalized. We people with a disability continue to struggle because reasonable accommodations and social supports are grossly lacking. People with a disability have rights but often cannot meaningfully exercise those rights. Today no one would assert, as Holmes did, that people with a disability are "manifestly unfit". This does not mean bias against people with a disability is absent. Bias, I would contend, is wrapped in warm, soothing and misleading language. Compassion and Choices advocates for aide in dying not assisted suicide. Assisted suicide is described as death with dignity legislation. Compassion and Choices was once the Hemlock Society. Their former name did not resonate with the general public hence the name change. 

For those who support assisted suicide legislation it is all about emotion and salesmanship; it is a slick branded effort to pass legislation and sway the public. The fact such legislation puts people with a disability at risk is instantly dismissed. The problem is selling life is much harder. Selling life with a disability is beyond hard. Selling life with a disability requires we use our imagination. Selling life with a disability requires non disabled others to think. Selling life with a disability requires people to reject virtually everything they have unknowingly and knowingly absorbed about disability. Selling life with a disability is to reject cultural norms associated with bodily perfection. Selling life with a disability requires one to acknowledge disability rights and civil rights are one in the same. Are we as a society ready for this sales pitch about life and disability? In a word, no. This is an important paradox for me and others who value disability rights and our very life. Like others with a disabled body, I embrace my existence. Why others cannot see this is a mystery to me. A mystery that reminds me of  Joseph Merrick and others who had no choice but to exhibit their bodies. I am not an animal Merrick roared. I am a human being. 

Monday, November 23, 2015

We Do Not Die in a Social Vacuum

Death is an inevitable biological process every human will experience in one form or another. For most who live a typical life span, death involves a long and steady decline. Most Americans state a strong desire to die at home. Few people experience this sort of death. Only 63% of people die at home. Another 17% die in an institutional setting such as a nursing home. Far too many receive hospice or palliative care far too late. Link: Most Americans do not die well. This is an indictment on American society. We hide death and divorce ourself of witnessing the process. We Americans do not even want to talk about death. On the rare occasion we do talk about death it is heavy on raw emotion and light on reason. Death, as discussed in the mainstream news, reflects the fever pitch in which we think about death. Brittany Maynard's death was tragic. She set herself up to be the personification of tragedy and her mission was to vigorously advocate for assisted suicide legislation. Maynard is not unusual, others have asked the court or physicians to end their life. In 1990 Larry MacAfee, a vent dependent quadriplegic, who was not terminally ill asked a Georgia court to allow him to turn off his vent. In 2010 Dan Crews expressed a desire to die in large part because he feared living in a nursing home. In 2011 Christina Symanski starved herself to death. McAfee, Crews, and Symanski were all high level quadriplegics. Aside from being quadriplegics they all shared one thing in common: when they expressed a public desire to die they became media celebrities just like Maynard. The general public loves suffering martyrs. 

I shake my head with wonder when I read stories about people with and without a disability who express a desire to die. Those that want to die get complete and total support in their quest. Ironically, who is discriminated against? People who are terminally ill, elderly, and disabled who want to live. Off to the nursing home for Grandma. Need specialized treatment for an aggressive and fatal form of cancer that will extend your life? Sorry, but that is not covered by insurance. What if you are paralyzed and need a social network of support to live your life? Sorry but institutional care is the best we have to offer. Disabled people, those terminally ill, and the elderly all put end of life issues in focus. The immediate reaction is fear. Foremost among our fears at the end of life is the loss of autonomy. The great value placed on autonomy works against us at the end of life. The same can be said for life with a disability. Autonomy is illusive for those with a disability. It defies conventional thinking. Autonomy is not about walking or the ability control one's bowels and bladder. Autonomy is a cultural ideal that defies definition. I consider myself to be autonomous. That is not how I am perceived by others--others who are bipedal with typical functioning bodies. My body represents the limits of modern medical care. My mere existence is a reminder of all that can go wrong in life. People with a terminal diagnosis  and the elderly make us equally uncomfortable. They represent human mortality. All know we will die and we do not need a reminder of this fact. Hence we segregate the elderly. We place the terminally ill in the care of others. Most of all we avoid talking about end of life. The discussions that are had about end of life focus on the unknown and autonomy. Most desire to die pain free. Most do not want to die cared for by strangers in an institution. People want to die in a humane way surrounded by loving family members. Predicting how this will happen is often pure folly. We humans are not good at predicting the future.

In terms of end of life, I am convinced of one thing: assisted suicide legislation is not the answer to why too many die poorly. Death is a social process. Death does not take place in a sociocultural vacuum. Even the most ordinary death has meaning to others who survive us. Those that lobby for assisted suicide legislation argue that it is about individual choice. People have the right to die as they choose assuming they are not mentally ill and are of sound mind.  Among those that advocate for assisted suicide legislation I am struck by the slogan: "My Life. My Choice. My Death". In the past I have quipped that sure is a lot of my, my, my. What is lost among the my, my, my is the social consequences of death. I read an essay in the Washington Post titled ""The Dangerous Contagious Effect of Assisted Suicide Laws" by Aaron Kheriaty about the rise in suicide rates in states that pass assisted suicide legislation. Link: Kheriaty's article is largely based on the recent findings made by two British scholars, David Jones and David Patton. The Jones Patton article, "Effect of Physician-Assisted Suicide on Suicide Rates" in the Southwest Medical Journal, concluded that in states that had passed assisted suicide legislation the overall rate of suicide increased 6.3 percent. Link: This conclusion led Kheriaty to write: 

It is widely acknowledged that the law is a teacher: Laws shape the ethos of a cultural by affecting cultural attitudes toward certain behaviors and influencing norms. Laws permitting physician-assisted suicide send a message that, under especially difficult circumstances, some lives are not worth living--and that suicide is a reasonable or appropriate way out. This is a message that will be heard not just by those with a terminal illness but also by anyone tempted to think he or she cannot go on any longer.

In part this explains why strangers will accost me with such statements such as "I would rather be dead than use a wheelchair". To them, life with a disability is a fate worse than death. Suicide for them is the only real option. What is not addressed is the fact that suicide is a public health care crisis. Suicide is the tenth leading cause of death in the United States. In 2013, the most recent year stats are available, there were 41,149 suicides. To me, the Jones/Patten findings and unacceptably high rate of suicide undermine the argument that assisted suicide is about nothing more than personal choice. Like  Kheriatry, I think we are at a cross roads. I too wonder what sort of society are we? Do we as a nation want to legalize a practice that will worsen an existing public health care crisis? 
 Let me contrast the above questions with a lesson from the past. 1951 and 1953 witnessed the most severe poliomyelitis pandemics in American history. Everyone knew those saved in the United States would never return to normalcy. This was a given. Rehabilitation units were established nationwide. School gymnasiums were turned into wards for those dependent on an iron lung. The response was extraordinary. Tom Koch in his book Thieves of Virtue wrote:

Nobody asked the cost of the new technologies that permitted patient survival. No one warned that the continuing care and rehabilitation for those left with withered limbs would be economically unsustainable. No body suggested that the folk saved by these extraordinary interventions would be a social burden whose public cost of care could never be recovered. Nor did anyone whisper that the long-term severity  of even the best anticipated outcomes would leave the afflicted with a quality of life so intolerable that they would be better off dead. Medical and social ethics demanded society and its physicians do all that was possible to save and, after saving, to rehabilitate polio's fragile survivors. Cost was not an issue because to not spend the monies, to not save the poliomyelitis patient, was unthinkable. 

I find the thought of assisted suicide legislation equally unthinkable. In place of the millions of dollars spent advocating for assisted suicide legislation we could use those funds to engage in a nationwide discussion about end of life. Why are there so few social supports for those who are elderly, disabled and terminally ill? Why are the elderly shunted off to nursing homes?  These are the sort of questions that could frame a nuanced and necessary discussion of end of life.  Don't be mislead by the highly emotional nationally known figures used to promote so called death with dignity laws. Dignity exists for all humans and it is our responsibility to value all lives.