The Demeaning Language Associated with Disability

Anti disability rhetoric abounds. Disability is inherently bad. Parents who have a child with a disability, often referred to as a special needs child, carry a heavy burden. Adults with a disability are characterized as suffering. Peace suffered a SCI. John Doe suffers from cerebral palsy. The disability itself is not of importance. Disability and the language used to describe disability is routinely negative. The type of writing is not relevant. The tabloid New York Post or the high brow Atlantic, New York Times, academic journals all use negative language when describing a person with a disability or a disability related issue. As I waited for dawn this morning, I read two stories that framed disability particularly badly. Both stories were published within twenty four hours of each other. I could have selected many other stories but the articles I will deconstruct were typical--one for mass media consumption the other solid reporting undermined by ableist language.

First, is typical British mass media trash framed as a feel good story about overcoming disability that fits squarely into "inspiration porn" (a term I do like to use because its shuts down nuanced discussion). The title itself is objectionable. "Cerebral Palsy Sufferer Tom, 23, Lands Full-time Job at Altrincham Supermarket--After 950 Rejections in Five Years". Linkhttp://altrincham.today/2015/12/14/cerebral-palsy-sufferer-lands-full-time-job-altrincham-supermarket-rejections-five-years/ When I read the title I assumed the article would be about disability based bigotry in the work force. No such luck. The article completely ignored all the questions I had expected to be raised. Why are people with a disability unemployed in such great numbers? Why was the man in question, Tom Stephens, rejected 950 times in the past five years? Instead of asking hard questions the article was a puff piece of overcoming on the part of a man who suffers from cerebral palsy. Tom "endured a fruitless search for employment". He did not encounter disability based bias. The plucky Tom "never gave up, but all those rejections really knocked my confidence". Who is credited with getting a job? An employment agency Ingenues. This agency let Tom attend a special eight week program involving three weeks of classroom based learning followed by four weeks on the job training. Tom was one of seven people with a disability to complete the program. The feedback from the store manager where Tom works has been "fantastic". Tom shows "great enthusiasm and willingness to learn". The condescending tone is sadly all too common when it comes to evaluating the work ethic of people with a disability. The article essentially pats Tom on the head for doing a good job. Clearly, Tom is highly unusual and is ever so special. This is ableism run amuck.

Second, and more disturbing, is a article in the Atlantic entitled "Nowhere to Go: The Housing Crisis Facing Americans with Disabilities"by senior correspondent Gillian B White. Link: http://www.theatlantic.com/business/archive/2015/12/renting-with-a-disability/420555/ I expect much more from the Atlantic. The language used in this article was deeply objectionable. The reporting was important. Anyone remotely familiar with disability knows three constructed obstacles derail the lives of many people with a disability: lack of accessible housing, access to mass transportation and unemployment. The article in question details the results of a Harvard University report that found 7 million renter households have a person with a disability. The lack of access is a problem that is going to get worse before it gets better in large part due to the fact the Baby Boomers are getting old and are aging into disability. Clearly sympathetic to the lack of accessible housing what's the problem? The language. Here are a few tidbits.

Mobility is "the most common challenge" associated with disability.

"Disability challenges" is referred to repeatedly. 

Use of the words "confined to a wheelchair". 

Use of "needs of residents", and "specific needs".

Disability "can worsen" with age. 

Making apartments more "accessible isn't impossible". 

There is no incentive to to make access a "priority". 

There is no focus on the civil rights of people with a disability. There is only passing reference to the ADA and the law is framed as a quasi architectural compliance law rather than civil rights legislation. Thus in a "good" article on the lack of access the language used undermines the positive thrust. Lost is the fact that only 1% of rental housing is accessible for a person such as myself. In terms of the entire country the Northeast where I live has the least accessible housing. Many rentals are old and existing housing is typically cut up older housing into small apartments. Few single family homes are accessible. Even newer homes built after 2003 are largely inaccessible. Just 6% of new housing is accessible. I think this is an overly generous assessment. In Westchester I saw development after development go up in the post ADA era. None of the homes were accessible. Developers were creative in insuring a lack of accessible homes. Upon initial construction I saw ramps on a few houses. Buyers deemed accessible ramps an eye sore. These ramps were designed to be removed by builders yet the letter of the law was met. Once sold the ramps were quickly and easily removed as it was attached to the house with lag bolts. 

What is lost when discussing accessible housing is that the features required to provide access to all benefit all people. Grab bars in the bathroom are good for elderly parents and make convenient towel racks. Raised electrical outlets make them easy to reach for all people. Ramps into a house are a delight when moving in or out. Ramps will please every service man who is lugging in a large heavy new appliance. Wider hallways make getting that appliance in a breeze. Wide doorways and halls reduce the need to paint as walls do not get beat up. Ramps will delight kids. 

Few get or care about the above. Look at the comments following the Atlantic article. Providing accessible housing in minute proportions is acceptable. There is little need many contend. 5% is more than adequate. Think about this. You are moving to a town with 1,000 homes. If you need an accessible house 950 choices are eliminated. 95% of your friends who live in the same town live in inaccessible homes. Your social life just took a huge hit. How do you raise a child knowing that 95% of his or her friends live in an inaccessible house. You do not come across people with a disability because the vast majority of housing is inaccessible. I know this all too well. At this time of year many people have parties to celebrate the holiday season and New Year. I do not go to such parties because I am not invited. Virtually all my friends live in inaccessible homes. A few friends make custom ramps and go out of their way to be inclusive. I appreciate the effort but as I age I am increasingly resistant to using ramps that do not remotely comply to the ADA. I just cannot risk a bad fall. So as I age I become increasingly isolated. My ability to navigate the world diminishes due to the aging process. It is no wonder I dread the season of false good cheer. 

The Season of Good Cheer?

I dread December, the happiest time of the year. Like many people at the end of the year, I become reflective. I think long and hard on what I have and have not accomplished. On New Year's day I take pen to paper and write down goals for the year. Always too ambitious, I rarely reach my goals. Beyond a general malaise, as a paralyzed man, I have added reasons for dreading December. The aura of good cheer  and help is forced upon me by strangers. Do gooders abound and the sense of charity is palpable. Everybody wants to help me. Some want to make a show of helping me.

Year after year December is a social battle field. I do my best to avoid any social interaction remotely associated with Christmas or New Years Eve. I would not consider entering a mall and when forced to shop I do so at odd hours. Simply put, I cannot be out in public without random strangers who will force "help" upon me. I cannot get in and out of my car without multiple people requesting to help me. Yesterday I was asked if I need help not once, nor twice, nor three times but rather four times. For me, this is the season of imposed "help" that is not needed or desired. I am not perceived as an ordinary middle aged guy. I am the symbolic representation of disability. I am the blue wheelchair logo--static or active. I am a classic representation of misfortune. I am the charity model of disability. Good cheer is forced down my throat by others.

The older I get the more self protective I become when December inevitably rolls around. The reality is one's life and the so called holiday season are often at odds with each other. Enforced good cheer hides much social angst. The imposition of help is in my estimation, a kind of internal cleansing for others.  I am being used and am an ideal target of opportunity. Many assumptions are made and all of them are wrong. My life must be hard. My life sucks because I use a wheelchair. Wheelchairs are bad. I am suffering. I am in pain. I am sick. I am likely unemployed. My social status is lower. All this goes unsaid. The negativity associated with wheelchair use is a given. It is absorbed just as water and food are absorbed by the body. Unconsciously we Americans learn disability in the broadest sense of the word is bad. Disability is feared. In a split second a bipedal person could be paralyzed. We are the only minority group one can be forced to join.

My town of Cazenovia is a no go zone all of December. Doing anything in town is fraught with confrontation. Enforced help is taken to an extreme. Earlier this week a mundane errand list piled up all of which had to be done locally.

Post Office: I get out of my car. I turn down two offers of help. As I try to enter the post office a man stands in the door frame holding the door open. I cannot get by. As meekly as possible I state he is not being helpful. His face flushes read with anger and he curses under his breathe.

Drug Store: I get my prescription and a few other things. As I head to the register a customer, not an employee, is making a show of clearing off the lower counter top that was, as usual covered with things for sale. I place my things on the counter and I am asked in a snotty tone "don't you have something to say?" In a neutral tone I replied "No Ma'am". She replies "You people are always so bitter Why I am nice to you people is beyond me."

Liquor store: As I look for a bottle of rum the man at the counter starts telling me offensive jokes. He asks me to slow down in that thing (my wheelchair). He asks how fast can I go. He asks do the cops pull me over. I remain stone silent. He also insisted on helping me with the door. It is clear he cannot understand why I refuse his help and offer to carry the one bottle of wine I bought to my car. He is clearly annoyed with me. I share his annoyance.

Supermarket: I enter, grab basket and am in the produce area. The manager comes over to me with an employee in tow. She tells me "I have assigned this employee to carry your basket and help you shop."  I did not make such a request for help. The manager simply assumed I needed "help". When I declined she shook her head and the employee in tow said "I told you he was one of the bitter handicapped people who insist on doing everything by themselves".

Laundromat: The laundromat is the most socially dangerous place I regularly go to. Getting in and out the laundromat has lead to some remarkably nasty exchanges over the last year. This week it was weird. After I got my laundry together I turned and saw four people were holding the outer and inner doors to enter. I am sure these do gooders were ever so pleased with each. I was appalled. Was this their intent? No. Did they embarrass me, yes.  And what could I do but mumble a thank you. Had I not done so I am sure I would have been yelled at.

People, typical bipeds, want to make a show of helping the handicapped in December. The other eleven months of the year they are quite content to disparage people with a disability. I would like to know why no one in my town cares that the stores on the main drag are needlessly inaccessible. The library makes a great show of access but scratch the surface and access is more show than reality. Subway has fought to remain inaccessible for a decade. Last year a settlement was reached with the Department of Justice. Subway agreed to make the store and bathroom accessible. Subway had 180 days to comply. Well over a year later Subway has done nothing.

Please spare me the micro aggressions in the form of help. If I need help I ask for it. Adaptive sports taught me this. To be more active sometimes I need help. But help in every day life? No thanks.  I mastered my activities of every day life long ago. I just want to be equal, to share the same rights as the bipeds that surround me. I am weary of being hurt and discriminated against. Oh yes the Garden club does a great job decorating in the fall outside the library. The wonderful decorations obstruct the entrance and I cannot enter independently without being able to press the power door open button. I objected but the decorations and work of the garden club are more important and valued than my civil rights. The town also has a great tree lighting ceremony in December. I don't go as no consideration is given to access. How, I wonder, can people be so oblivious on the one hand and yet on the other desire to help me. The dichotomy makes no sense unless help at its core is about the person offering help rather than receive said help. Think about that one please.

A Post by My Son: Thomas Peace

I Resent the World, Not My Paralyzed father:

A Rejoinder to Zach Thompson

         Growing up was different for me. My father was paralyzed and used a manual wheelchair. There were no other mothers or fathers who used a wheelchair when I was a kid. We stuck out everywhere we went. What I remember the most was the lack of wheelchair access. It seemed as though everywhere the two of us went access was a problem. Nothing was simple—even places that were supposed to be accessible had needless barriers. I was on a first name basis with the principals of both my elementary and high schools because my school was accessible in name only. The principals were not supportive. They did not like us and we did not like them.  For example, all the after school programs, concerts, Boy Scout meetings, and parent teacher nights were technically accessible but my father always had trouble simply entering the school building. The accessible door was locked at night. Curb cuts (an eye sore according to the high-school principal) were blocked. The auditorium had no accessible seating area. It was one battle after another.

I grew up baffled.  By 4^th grade I knew the most mundane event was never, well, mundane. I didn’t understand why there were so few ramps, curb cuts or working elevators. The school elevator was always locked and no one ever knew where the key was. When I got hurt or in trouble (I was good at both) when my father showed up people were stunned. This was weird to me. My father was just another Dad. I did not care that he was a T3 paraplegic; meaning he is paralyzed from about the mid-torso down. I know this because every body I knew asked me why he uses a wheelchair and when was he paralyzed. My father was paralyzed when he was 18 years old; long before he was married and before I was born.  All my memories include my father using a wheelchair. This was the norm to me. Unlike Zach Thompson, I never resented my father for being paralyzed. Link: http://www.vice.com/read/how-i-learned-to-stop-resenting-my-disabled-father I did resent the way he was treated by others. Frankly the lack of access just pissed me off. What’s the big deal? Even as a kid, I knew wheelchair access was required by law.   

I don’t get it. Resenting any person that is disabled makes no sense to me. It’s not like my dad woke up one day and decided wheelchairs are awesome and wanted to use one the rest of his life. The need to use a wheelchair could happen to anyone. People with a disability are the only minority group that one can join by happenstance. Some of my best childhood memories involve sitting on the floor with my dad fixing up his wheelchair. As a kid I was fascinated by my dad's wheelchair and wanted to know how it worked. The only thing that made me angry and resentful was how hostile people were to my father. I could never understand why he was treated so badly. Why wasn't my father allowed to be a chaperone and go on school trips with me? Why was participating in any school event always a problem? Why did my father always need to enter a building from the side or rear entrance? Why as a little boy did I call the iconic blue wheelchair logo the blue sign to nowhere? That damn sign literally led you nowhere that was accessible. 

What bothered me the most was that the principal and other school administrators were mean to my father and resented his existence. In retrospect, I think they hated him. They hated dealing with wheelchair access issues. My father merely wanted what all parents desire--to be involved in my education. He was forced to make this a demand. He had no choice but to be confrontational. My school, as I would learn as a teenager, flagrantly and unapologetically violated the Americans with Disabilities Act (ADA). For instance, when I participated in the school drama club and musical productions, the auditorium was nor remotely accessible. The ADA clearly states that all public school buildings that receive money from the federal government be handicap accessible. The newly renovated auditorium did not have any handicapped seating area. After a long and heated battle, the school did include a small area for my father and I presume all other wheelchair users to sit. The school did not build this area to code. They merely created two flat sections in the rear of the auditorium. The so called handicapped seating area quickly became a storage area for spotlights, storage boxes and a dumping ground for miscellaneous stuff.

One of my favorite things to do when I was bored in high school was to walk around the school and find ADA violations that I knew would never be fixed. My father was advocating for his civil rights. More importantly, my father was advocating for the next generation of people with a disability who would attend or visit my school. He was advocating so the next student with a disability, or the next parent, would not encounter illegal barriers to inclusion. He often told me the he did not have the right to a publication school education until 1975.

         None of these events, memories or battles made me resent my father's disability. They made me resent the public school I went to. They made me resent many institutions that flagrantly violated the law of the land. They were violating civil rights legislation enforced by the Department of Justice. Screwing with anyone’s civil rights is just wrong. What bothers me the most today is that not much has changed. People still don’t care about the rights of people with a disability. The ADA is not even considered civil rights legislation by some people. People just don’t get it. I do. I understand discrimination when I see it. When I graduated from high-school and college I was angry. My anger is well placed. At my graduation ceremony from Hofstra University, a school well known for wheelchair access, my father was forced to sit way in the back with an obstructed view.  He wrote about this on his blog Bad Cripple and called handicapped seating a disability ghetto. I am still angry about this. My father helped me pay for college. Yet he could not even see me walk across the stage. Link: http://badcripple.blogspot.com/2014/05/the-disability-gulag-at-hofstra.html 

         In Kenny Fries book, The History of My Shoes and the Evolution of Darwins’s Theory, he argued that disability is not a disadvantage but rather human variation. Other scholars like Gregor Wolbring in the documentary Fixed make the same point. Disability has been and remains an essential part of human life and evolution. Disabled people like my father are not somehow less because they cannot walk, see, or hear. Disability is variation of the human condition. I would not be the man I am today if my father had an ordinary body. I would not value equality to the extent I do. I would not desire to help others to the extent I do. I would not care as much. I deeply care about others—all others regardless of race or creed. I want to make the world a better place for the next generation. Had I not experienced the needless social adversity and out right bigotry my father faced due his basic desire to participate in my childhood I would be a different and lesser man. I learned first hand to question authority and the status quo. I learned some hard lesson about how wrong oppression is. I learned questioning the status quo can only benefit all of us.

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.

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:http://davehingsburger.blogspot.com/2015/11/history-view-from-wrong-side.html  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. 

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: http://www.apa.org/pi/aids/programs/eol/end-of-life-factsheet.aspx 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: https://www.washingtonpost.com/opinions/the-dangerously-contagious-effect-of-assisted-suicide-laws/2015/11/20/6e53b7c0-83fb-11e5-a7ca-6ab6ec20f839_story.html 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: http://www.medscape.com/viewarticle/852658 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. 

You Can't do That

Today was gorgeous. It was 71 f. with crystal clear blue skies. This is way out of the norm for central New York in November. Inspired by the weather, I went for a long walk with my lab Kate. I needed to get out and do something that would bring me some happiness and walking Kate has a 100% success rate. Yesterday in my class I showed a grim documentary about Willowbrook Institution. The only way to teach this topic is to get upset. I had to be outraged to be effective. I thought about what I would say to students while I looked at photo after photo of what Robert F. Kennedy called a "snake pit". Deeming Willowbrook a "snake pit" was being kind. It was a hell hole and a national disgrace. Few of the students had heard of Willowbrook. Few knew the long history of institutions; none had any idea ugly laws existed. The students were aghast. So was I.

Back to today. Post walk, I went to Wegmans, a supermarket chain in the Northeast, that has a cult like following.

Above is a sign Duke students created when they played Syracuse (the rivalry between the schools is intense and is big time NCAA sports). I thought the sign, "Wegmans is over rated" was funny. I will confess I love the supermarket chain and decided to pick up something special and cook outside. All was well until I went to my car after shopping. I was a trying not to drop to my grocery bag when out of the corner of my eye I saw a car slowly backing out. I instantly knew the car was going to hit me. It was a silent Prius and I instantly thought of Steve Kuusisto. Silent cars are potential killers, a very real threat to blind people. My next thought was to stick out my hand, put it on the rear bumper and push really hard. I dropped my bag as I propelled myself backwards out of harms way. I was not in any real danger and thankful the elderly woman driving the car was going very slow. The driver realized she had almost hit me and stopped the car. She got out of her car and was clearly annoyed. Her first words out were "You can't be out by yourself. Where is your care taker?" I took a deep breathe and told myself the woman is elderly and her perception of people with a disability is antiquated. I replied "I am ok. I am going to pick up my groceries." She sort of huffed at me and said nothing as I picked up my groceries. Once I had my things together she had regained her composure and firmly stated "You shouldn't be allowed out by your self." I told myself to keep my mouth shut. Let it go. Cut the woman some slack. She's old, she was embarrassed, and there is nothing to be gained by engaging her. Society has progressed I thought. Only an elderly person would state something like this. Perhaps she lives in a nursing home and knows some residents are not allowed outside the grounds without another person. Let it go.

Inventing things to do so I could enjoy being outside before I got in my car I decided to open the hood and pull the leaves out of the area between the hood and windshield. As I was doing this I saw a woman about to pull into the empty spot and we looked at each other.  I pushed to the front of my car and the woman continued into the spot. I was relieved. Normalcy won the day I thought. I was an ordinary person after all. One little old lady does not represent the way all people perceive me. Better yet the woman had a small child in the car kindergarden age. I give the mom and child a broad smile. I said "Hi I'm Bill what is your name?" She replies "I am Elsa. What are you doing?" I replied "I am taking the leaves out of the car." Her mind was whirring. She was curious, thought a second and said "You can't". Puzzled, I told her "Yes, I can. It is easy and fun to take the leaves out". Then she said "No you can't. You can't do a lot of stuff."  Her next words took me aback. "You can't walk. You can't do anything. You can't even have fun". At this point I looked at the mother and her face was neutral. I told the small girl "Have fun shopping with your Mom".

It is seemingly inconsequential exchanges such as the one I just described that keep me up at night. This girl had absorbed some lessons about people who use a wheelchair. Those that use a wheelchair simply can't do a lot of stuff. Did she learn this at school? At home? She was very clear on can't. I can't do a lot of stuff. Her mother did not correct her. Did she too share the belief I can't do a lot of stuff? When will this change? When will people consider disability, in my case wheelchair use, simply a part of life? Instead, the norm is to think of all the things I can't do. At the forefront is the physical deficit. Obviously I can't walk and the next thought is what else can't I do. Disability is bad, a negative influence on life that limits me. Why can't people make an intuitive leap in logic. Here is a middle aged guy doing the ordinary. Shopping, cleaning leaves out of the hood of his car. Ho hum. Instead the unrelenting focus is can't. The girl has learned her lessons well.

The above is a simple social exchange but it has larger implications. The instant negativity attached to disability is raised to a higher level when serious, life threatening illness is at issue. Cancer is bad. All illness is bad. Terminal illness is the worst--a tragedy. Terminal illness is the worst because our very existence is threatened. For some, the response to mortality is primal fear. Fear I get. I have felt primal fear and have had life threatening illnesses. I have almost died more than once. Primal fear however can be overcome with reason. This is hard to do. It is far too easy to let fear grip us. It is easy to think of all the things you can't or will not be able to do when end of life approaches. For example, Brittany Maynard was gripped by fear after she received a terminal diagnosis in the form of an aggressive and fatal brain cancer. Maynard chose to let her fear (understandable for sure) dictate her death. Indeed, her lasting legacy is less about her life than it is about her death or her "gentle passing" in the words of her widower husband Dan Diaz. As most know, Maynard became the focus of an intense and superbly orchestrated public relations campaign waged by Compassion and Choices. There is no doubt Maynard became the poster child for so called Death with Dignity legislation. Thanks in large part to her activism assisted suicide is legal in California.

The end of life, like disability, discussions are emotionally charged and focus on one thing: loss, or in the words of the little girl I met today, can't. There is nothing positive about the end of life. There is nothing positive about disability--you simply can't do anything. Both end of life and disability are about the loss of control. The loss of dignity. The loss of autonomy. End of life and disability are life altering for all involved. Maynard husband stopped working after two decades and is now an advocate for Compassion and Choices; a radical shift he maintains honors her life. I find this sad. Maynard is largely known for one thing--her death. I for one prefer to think of death as a process we all will navigate. That process should be about life, a celebration of what a person valued. Life does not end with a terminal diagnosis just as life does not end when one acquires a severe disability. I never think about what I can't do. I don't think my life is tragic. I don't wish I was dead--something strangers ask me. My focus is squarely on life. Maynard's focus was squarely on death. If I fear anything, it is people like Maynard. People who can't handle the process of death and instead focus on a "gentle passing". Oh the euphemisms abound when when death with dignity is discussed. Lost in the shuffle are people not as privileged as Maynard. Vulnerable people abound. Vulnerable populations are at risk. People with a disability are at risk. I am at risk. Read my essay in the Hastings Center Report entitled "Comfort Care as Denial of Personhood" published in 2012. I wrote about being offered assisted suicide an experience that haunts me to this day. For a person who is vulnerable such as myself I have good reason to fear for my life--a fact Compassion and Choices and those who support assisted suicide dismiss without much, if any, consideration.  

We face a great challenge in that society refuses to provide the necessary social supports that would empower us to live rich, full, and productive lives. This makes no sense to me. It is also downright dangerous in a medical system that is privatized and supposedly “patientcentered”— buzzwords I often heard in the hospital. It made me wonder, how do physicians perceive “patient-centered” care? Is it possible that patient-centered health care would allow, justify, and encourage paralyzed people to die? Is patientcentered care a euphemism that makes people in the health care system feel better? When hospitalized, not once did I feel well cared for. All I felt was fear, for when it comes to disability, fear is a major variable. I fear the total institutions Erving Goffman wrote about—places where a group of people are cut off from the wider community for extended periods of time, and every aspect of their lives is controlled by administrators (nursing homes, prisons, hospitals, rehabilitation centers). I do not fear further disability, pain, or even death itself. I fear strangers—the highly educated men and women who populate institutions nationwide.
What I experienced in the hospital was a microcosm of a much larger social problem. Simply put, my disabled body is not normal. We 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. 

I suggest one can replace the word disability used in the above quote with the word terminal. Euphemisms are dangerous. For example, legislation that enables one to access a lethal prescription is called Death With Dignity or Physician Aide in Dying. If we are going to let people legally commit suicide let's not mince words. It is assisted suicide legislation we are discussing. It is knowingly ending the life of a human being. I plan on living in my atypical body as long as possible. I like my body very much. I do not care about my body's obvious and disruptive dysfunction. I do not care about the pain I feel. I do not care about the spasms that wrack my body. Think Dylan Thomas Do not go gentle into that good night. A great poem for sure but for my taste think Pablo Neruda Only Death.   

There are cemeteries that are lonely,
graves full of bones that do not make a sound,
the heart moving through a tunnel,
in it darkness, darkness, darkness,
like a shipwreck we die going into ourselves,
as though we were drowning inside our hearts,
as though we lived falling out of the skin into the soul.