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Wednesday, December 30, 2015

Routine Social Degradation

I often joke that having a disability is the perfect cure for a big ego. When my head gets too swelled and I think I am hot stuff a stranger will ask me a stunningly stupid question or make a degrading comment. As most wheelchair users will test, social interaction is rarely routine. My social life is wildly unpredictable. When I go out my front door I have no idea if my experience will be routine, positive, negative, strange or flat out weird. There is one constant: the majority of people I interact with during routine social interaction assume I am inferior socially and physically. When I ask a person to move my request results in no movement. I am often told "go around me", "wait until I am done", or am simply looked at with scorn. Navigating the built environment is never easy  and ignorance abounds. In addition, society creates problems that need not exist.

Toy store aisles post Thanksgiving are jammed with displays and surplus stock making it impossible navigate the aisles for wheelchair users. The assumption is no parent with a disability exists.

At my local library the garden club decorates the entrance every Fall. When I inform a library staffer that the button to the electric door is now blocked and impossible to reach the reply is "Oh, the garden club worked so hard and it looks lovely. Why don't you call or knock before you arrive". When I note I can no longer independently enter the building thereby defeating the purpose of the doors I get a stony silence or angry look.

At the national chain drug store, the check out lowered counter space designed so a person using a wheelchair can easily place items down is stuffed with merchandise. This is rampant. Every place I shop the supposedly accessible counter space is used for merchandise. When I point this out I am met with rolling eyes, shrugs, and silence. If I ask for the accessible counter space to be cleared I am instantly a difficult customer that creates needless work.

At the big supermarkets and drug stores I often observe an area where a person can check their blood pressure. This area has a chair bolted to the ground and a prefabricated structure that requires a person to sit and put their arm through a rigid tube with a built in cuff. It is impossible for me to check my blood pressure. I have told more than a few pharmacists about this and asked how can I check my blood pressure. The stock answer is "go to your doctor and have him check it" or "I can't help you".

Elevators often double as storage rooms. Elevators are often locked. No person has a key.

Accessible dressing rooms in the Gap and many other stores are locked.

Van accessible parking spots blue lined area where a wheelchair lift can be deployed are routinely cluttered with empty shopping carts thereby making the spots useless.

At the local minor league baseball stadium a new party zone behind right field was created. To enter this area one must exit the building and walk around the stadium to access the ramp.

When a bus driver at a given stop tells me the wheelchair lift is broken my reply is "The law mandates a bus with a broken lift cannot be put in service". The average bus driver will either give me the finger, curse at me, or most likely say "Get the next bus".

More than one cab driver has told me he will charge extra for taking the wheels off my chair and putting the frame and wheels in the trunk.

Many public schools in suburbia have no wheelchair lifts on school buses they own or lease. It is not uncommon for school districts to suggest the student that uses a wheelchair take a cab to and from school.

Polling places are often grossly inaccessible. Accessible voting machines are uncommon. Polling place workers are ignorant. More than one volunteer has suggested they enter booth with me and they can pull the handle.

I could go on with dozens of other examples. I often wonder why people are so willing to violate the rights of people with a disability. I wonder why are people so resistant to thinking out of the box. Why do people think of all the things I cannot do rather than what I can do. Where do people learn that disability based bias is perfectly okay. As I wondered about this I read a post by Stephen Kuusisto entitled "Playing Chicken, Driving a Motor Bike Pretending to See". Link: Kuusisto reminded me ableism is learned from a very young age. Our public and private secondary schools do a fabulous job teaching children that people with a disability are different. They are a drain on limited budgets. They require special services. They are needy. They are shunted off to special resource rooms. They are sent home by cab or on a special short bus. Children are smart. Children are taught disability based segregation is the norm. Worse, kids with a  disability make an easy target. This is what Kuusisto and I experienced. Kuusisto recalled:

  • Sighted children shared nothing.
  • No one played fair.
  • Hitting people was easy and the blind kid was a perfect target.
  • Hiding things from the blind child was sport.
  • Disarranging the blind kid’s possessions was also rather fun.
  • See above.
  • Sorry is absurd.
  • Steal soap from the blind kid.
  • Push him in the toilet whenever you have a chance.
  • Always take the blind kid’s lunch.

  • My experiences were a bit different. I was nick-named "Old Ironsides". My peers thought this was funny.

    Kids thought it was hysterical to crawl under or over the lone accessible bathroom stall walls and lock it from the inside. Kids thought it was funny when I urinated on myself.

    In college one semester the only accessible toilet in my dorm had no door but a curtain. The curtain was routinely ripped out and thrown away. I had to urinate and deficate with no privacy.

    After getting numerous flats in my wheelchair tires I asked teachers to stop using thumb tacks and use staples instead. Teachers refused my request. My peers thought me getting a flat was very funny and started putting thumb tacks all over school. At one point I was getting a flat daily.

    Yes, this was long ago. The skeptic could argue this is a thing of the past. The ADA I am often told "solved all the access problem you might come across". Sorry but no, the ADA set the minimum accommodations required by law. More to the point, social barriers remain the norm. I recall my son was humiliated at a Boy Scout event by his peers who openly discussed my sexual capacities and the boys speculated on who his real father was. The assumption was I was asexual. This was hysterical funny to all the boys except my son.

    To be blunt there is just no incentive to value the inclusion of people with a disability. Instead we fetishize disability. I am not referring to the sexual fetishes associated with disability but rather "inspiration porn" and sappy media portrayals of over coming any given disability. The assumption here is that disability is a tragedy. Based on 38 years of wheelchair use I cannot help but conclude non disabled people have no interest in disability. I find this remarkable. Disability is after all the only minority group one can join by mere bad luck or accident. One would think disability rights would important given this fact. Yet in the digital age society seems to be content with disability based click bait like theMighty. From its inception, the Mighty has pumped out a lot of content by parents of children with a disability. S.E. Smith recently wrote that the Mighty is a "place where parents refer to themselves by their children's diagnoses, as though they have become entry subsumed  by their children's disabilities, another way to signal that  they're utterly burdened. (Autism Mom, Kidney Mom etc) Its a place of shocking disregard for disabled peopled,  unsurprisingly, includes rather a lot of actively disabilist content. Link: Within the disability rights community the Mighty is seen as a sewer spewing out inherently destructive and degrading essays that reinforce age old stereotypes associated with disability. It is in short ableism run amuck.  So much for our supposed allies. I wish had more answers than questions. I wish I could stop reading stories of abuse and abandonment. I wish our society was more accessible 25 years post ADA. So as I look out my window in near darkness nearly four decades since I was paralyzed I am strategizing how can people with disparate disabilities band together to form an effective political coalition. Suggestions are welcome.

    Saturday, December 26, 2015

    Coming of Age with the ADA

    A good friend sent me an article written by Will Reeve, the son of Christopher Reeve. The article was published in USA Today entitled "Reeve: Disabilities Battle is Not Over". Link: Will Reeve is correct--the battle for equal rights is far from over. Will Reeve considers himself part of the "ADA generation--an advocate to combat the invisible reality that we are far from delivering on the key principles of this legislation. And it is up to the ADA generation to engage in honest dialogue about the strengths and short comings of the ADA to catalyze change". Reeve goes on to quote his famous father, Christopher, who apparently said "It comes down to us. We have the power to make an enormous difference". Christopher Reeve did make an enormous difference. In my opinion he set back disability rights by a decade or more. Reeve, a Hollywood insider known nation-wide for playing the role of Superman, used  his fame and fortune for a singular goal--cure for spinal cord injuries. He was an inherently destructive one trick pony from the instant he was injured to the day he died. While his goal was laudable, the way he set about reaching that goal was to rely on a medical model of disability and effectively use pity to raise millions of dollars. The fund raising resulted in the creation of a multi million dollar foundation named in his honor. The foundation's primary focus on cure has not changed measurably. Disability rights gets short shrift.

    It is ironic that I came across the Will Reeve article. My son Thomas Peace just posted on my blog  and was interviewed by Louise Kinross Link: My son and Will Reeve were unusual as children. In the late 1980s and throughout much of the 1990s men and women who had experienced a spinal cord injury were not deemed parental material. As my son wrote "we stuck out everywhere we went". To further the irony we lived a few miles away from Reeve. His son and mine played house league hockey and they were both avid New York Rangers fans. The similarities end there. I embraced a hard core disability rights perspective that was of no interest to Reeve and his foundation. The contrast between Reeve and myself was stark. After Reeve was injured in 1995 I felt sorry for him. Life as a vent dependent quad is hard, the adjustment massive. I thought in time the veritable light bulb would turn on and he would get that disability is primarily a social problem. I acknowledge the effort to find a cure for spinal cord injury is good but life is equally important as is advocating for disability rights. Reeve never got this. Worse he became increasingly desperate for a cure and catered to the lowest common denominator in order to raise money. He struck me as severely alienated from other people with a disability. I suspect he had no idea other people with a disability were appalled by his rhetoric for cure and had instead embraced a social model of disability. The divide between Reeve and the average person with a disability was starkly apparent in 1996 when Reeve gave a speech  at the Democratic National Convention. The main stream press was agog. Reeve was a saint. He was brave and the savior of all Democrats. Reeve was a champion of disability rights. Those who witnessed his speech at the convention openly weeped. The reaction on the part of people with a disability was the opposite. The disability press despised Reeve and considered his speech ableist. Reeve did note the importance of the ADA and disability rights but his words were fleeting at best. The man wanted to be cured! The crowd went nuts. The raw emotion was palatable according to Harriet Mcbride Johnson who was present. When she looked up at Reeve she saw an object and in Too Late to Die Young wrote "symbolically he's the object of devotion" and it was a "surreal". She looked up and saw "a ventriloquists dummy".

    I watched that speech and my face was crimson red. I was angry. Millions of people saw the speech in which he had reinforced every negative stereotype about disability humanly possible. Worse, he was lauded and praised. Lost in the sea of praise was how isolated he was.  Paul Longmore wrote "Christopher Reeve launched the most subtle, pervasive, and insidious attack against disability rights and people with disabilities in recent memory". He did the same thing locally. I know because I witnessed just how callous and uncaring he was. As long as he got in the door, he was happy. Other people with a disability were of no concern. For example, his son and mine played hockey. At the time many of the local rinks were not remotely accessible. I was often forced to drop off my son at a rink and had no way of getting in to see him play. In contrast, Reeve received special attention and I saw him enter a rink while I sat in parking lot. This sort of privilege took place locally and at Madison Square Garden, the home of the New York Rangers. Thus I shook my head in disgust when Will Reeve wrote about a revelatory experience.

    At a New York Rangers playoff game at Madison Square Garden this spring, I — accompanied by a friend who is paralyzed and uses a wheelchair — saw firsthand how accessibility has evolved over the past decade. When I attended games with my dad after he sustained a spinal cord injury, there was no seating for people with wheelchairs. Instead, my family would sit in folding chairs near the players' entrance, and we moved to the side when the Zamboni came through. It was all a major production.
    This time, though, entrances were accessible. Elevators led us to precisely where we needed to go, and clearly marked signs directed us to the wheelchair-accessible section. A local restaurant nearby had a permanent ramp that led directly to a patio where we mingled with fellow fans. It was quite moving to realize how much easier it has become for people in wheelchairs to get around and enjoy the same experiences others take for granted.

    A battle took place to make Madison Square Garden accessible. Reeve was not part of this battle. He was content to rely on his fame and have his singular needs accommodated. My son and I would have loved to have sat in folding chairs near the player entrance and move for the zamboni. Instead we sat in the aisle, there was no handicapped seeing until recently,  and were often forced to move six or seven times during a game because someone complained I was blocking their view. I had beer spilled over me by drunk spectators and ushers were point black rude. More than once I was told "just go sit in the bar, you are in the way". Madison Square Garden was and remains hostile to people who use a wheelchair.

    The difference between my son and Reeve's son is clear. My son battled with me and we were always side by side. I could not be more proud of him. He got disability rights and pushed back from a very young age. Once when an elderly man told him "Some day you will have to take care of your crippled father" he responded by saying "You are an ignorant bigot". I will forever recall the look of shock on the man's face. It is not easy to be deemed a bigot by a little boy in first grade. When wheelchair lifts were put on MTA buses I was an EPVA bus buddy. The battle to put lifts on the buses was fierce. I was cursed at and spit on for using the bus lifts when they were first put into service. Christopher Reeve did nothing for disability rights. Indeed, during Reeve's post injury life he did nothing but antagonize people such as myself whose primary interest is disability rights. He was a disability rights worst case scenario. He was blithely unaware of all the means with which he engaged with society was created by the people he dismissed and belittled--disability rights activists. Instead, he wallowed in his fame and used his wealth to distance himself from his crippled brethren. Not once did I hear Reeve bemoan the lack of adequate access to mass transportation, accessible housing, and unemployment rates that have remained at 66% for decades.

    Let's be clear about Reeve. He had no interest in battling for equal rights for people with a disability. He did not battle for the ramps and elevators he used. He did not battle to force hotels to have accessible rooms. He did not advocate for access in any way shape or form. He had one interest and one interest alone--cure. He was oblivious or simply did not care about others with a disability. I do not begrudge Reeve's wealth and fame. I consider his focus on cure for spinal cord injury unrealistic but worth while. But to suggest he was part of the battle for justice and disability rights is flat out wrong. While he was one of us he never connected with the disability rights movement or those who embrace an identity tied to disability. If there is tragedy involved in a spinal cord injury this is it; from the moment he was injured Reeve believed he was a class apart. He also created what I call the Reeve School of paralysis. In 2012 in a post titled "The Reeve School of Paralysis" I wrote:

    the Reeve School of paralysis perceives disability to be a personal tragedy. A spinal cord injury is a personal catastrophe. Life is bifurcated. There were the golden years before paralysis when life was perfect and the tragic, compromised, and diminished life after a spinal cord injury. Reeve would "suffer" with dignity. He would show great courage in the face of a horrific tragedy. It helped that he was good looking and stoic. He played this part to perfection. But wait there is more! Reeve, thanks to his fame before his injury, became an icon. He was the perfect cripple. He was not like other paralyzed people who wallowed in self pity. He wanted to be cured. He dedicated his life to cure. He founded the Reeve Foundation. He lobbied on behalf of other paralyzed people. He embraced high tech medical care--care meaning research for a cure and emphasis on dubious clinical trials for cure. He became a cure junkie and for this he was beloved by all--all those that knew nothing about disability. Reeve cemented an antiquated perception of disability. Disability is a fate worse than death. It is a singular experience, a tragic experience. The "job" for all people with a spinal cord injury is to seek a cure to paralysis. No risk is too great. No procedure too risky. No amount of money is too much. No matter what the focus is always on walking. 

    I do not care one iota about cure. Like my peers, I am too busy leading a good life. Again, the ultimate goal Reeve sought is a good one. But that is not going to happen in my life time nor in my son's lifetime. I just love life, the good and bad. I love my son. I enjoy teaching at Syracuse. I love to write. I embrace the family of friends I have made in Central New York. I want to help my son find work he enjoys. I want to see him mature and perhaps marry and become a father. I want to enjoy sports. I want to live to see the Rangers win a Stanely Cup and the Mets win a World Series. I want to cook good food. I want to drink rum and fine port. I want to get every last ounce of life out of my body. A paralyzed body I love and suits me. I do not care about bodily dysfunction. Believe me, my body reminds me daily about dysfunction and pain. I choose to enjoy what my body can do. To me, the focus on cure makes no sense. Such a focus misses the point of life. A focus on cure is to buy into the rampant ableism that surrounds us. I see a paralyzed man or woman and I think of all the things they can do. I see a person who uses a guide dog and think the team they form, human and dog, is the essence of human adaptation. I observe deaf people sign and I think of how Deaf culture is cool.I envy their language. I see an amputee walk by using a prosthesis and think the merging of technology and the human body is an inherent precursor to the future. I admire and respect those adapting to various forms of invisible disabilities such as Chronic Fatigue Syndrome. I respect those who are neurologically diverse and think about how fascinating the human brain is. You see, when I consider disability I believe it brings out the worst in society and the best that humanity can offer the world. I am quite proud of my crippled fellows. We are in the words of my son bad asses. 

    Friday, December 18, 2015

    Micro Aggression's Rampant December Presence

    Since class ended last week I have been trying to lay low. I do my best to avoid social interaction but sometimes I need to do the ordinary. Exciting stuff like grocery shopping, an odd trip to the post office or library, maybe even eat lunch out.  When I do this I am a target of opportunity. This is ever present and has been for over three decades. However the intrusion in my space and forced "help" is a real problem as Christmas approaches. I have read other people with a disability express similar sentiments. Dominick Evans recently wrote "Don't Just Say Hi to Me... Just Fuck off Instead". Link: Written in response to an ill advised add campaign by the Cerebral Palsy Foundation (Just Say Hi) Evans wrote the problem is not getting non disabled others to say hi but rather makes people go away. He concluded his post in a way that reassured me I am not the only one being harassed:

    I am not here for you to be inspired by me. I am not here to make you feel better about yourself. I’m here because I’m a human being just like everyone else. So next time you approach me, or any of my friends with disabilities, don’t say hi, unless you would say hi to everyone else around you. You don’t know what I’m going through, where I’m going, or even if I want to talk to you. If you wouldn’t say hi to a non-disabled person, don’t say hi to me. Instead, just fuck off, because frankly that’s the way the majority of people would act around anyone else.

    The bottom line is that people with a visible disability lose the ability to be anonymous. I always stick out. I stick out when I attend an academic conference. I stick out when I park my car. I stick out when I navigate my way through an airport and on and off a plane. I stick out when I eat at a diner. I stick everywhere because the world was built for bipedal people. My existence and the space I take up is out of the norm. The ignorant people I am forced to deal with have no clue what my life is like. When they meet me it is singularly unusual. My existence prompts a social response that typically involves rude condescending behavior. I have no privacy. None. Strangers feel free to ask any question that pops into their mind. These questions are typically inappropriate. A common conversation starter involves a stranger asking "Why do you use a wheelchair? or "what happened to you?" or "can you have sex?". The list of intrusive questions is a long one indeed. Some might think people are just trying to be nice. Wrong. I second Evans fuck off. 

    Evans is not alone nor am I. At Crippled Scholar I read "In Defense of the Radical Idea of Letting Disabled People Exist in Public Without Comment". Link: People with typical bodies do not get it. There is a cultural divide between people who are typical bipedal humans and those of us with a profoundly different body who navigate the world differently. For me, my difference is using a wheelchair. For others it might be a person who is blind and forms a guide dog team. For those who are deaf, it is the use of ASL. Our difference makes us a target. We are not mere mortals. We represent every other person with a similar disability. I do not speak for myself, I speak for all people who use a wheelchair. What bipeds do not remotely understand is how inappropriate intrusive questions are because they are inherently dehumanizing. Crippled Scholar wrote "These interactions are entirely fixated around the fact that I am disabled. They have nothing to do with me as a person". This line was followed by:

    The fact that disabled people are not seen as being entitled to personal privacy. The fact that our bodies deviate from the norm seems to give people the idea that their have the right to ask us probing questions and they don't take refusal very well. Perhaps this is why Evans says that despite his dislike of these interactions, he tends to reply with a  smile. In my experience attempts to deflect just leads to more probing questions. An out right refusal to comply is met with shock and frustration. It is also in my experience leads to them backing down because as I mentioned these people feel entitled to my personal information. They usually respond by attempting to shame me by saying something alone the lines of I'm just trying to learn, don't you want people to be educated. The fact that have been trying to teach them that I have the right to exist in public without being accosted is inevitably lost on them.

    There are over three million citizens in the United States 20% of whom have a disability. That leaves millions of citizens in need of a remedial education concerning disability rights issues. That is not going to happen if we rely on people being educated one by one. What is needed is a social revolution. Laws have failed to make a difference. They have failed not because they are inadequate but rather there is no social mandate to enforce them. I hear again and again about how the ADA is an unfunded mandate. I find this infuriating. The ADA is civil rights legislation. When I point this out people look at me with a quizzical expression. "Really, I had no idea" is the usual response. This also ends discussions as my point about civil rights requires thought.  People cannot fall back on what they learned about disability. The idea civil rights and disability rights are one in the same undermines what most absorb and are taught about disability.

    I have put great thought into how to respond to rude people and intrusive questions. Like Evans, I try not to engage. Rather than smiling I have mastered the placid look. I relax my facial features, remain silent, and am stoic as humanly possible. Think DMV employee like interest level. When I do not reply kindly and engage the responses can be swift and violent. I have had doors slammed in my face. I have had people scream at me that I was "a bitter ass hole". I get why Evans smiles. He is protecting himself. Unlike Crippled Scholar, in my experience people do not back down. Strangers insist on helping or get off on mere staring as though I am freak show. A few example should suffice. This week two people have grabbed by wheelchair when I was getting out to fill up my car with gas. A minor tug of war ensued. A more passive experience also took place this week. I was getting into my car when I noticed a man staring at me in the car parked next to me. I stopped my transfer and looked him in the eye. He lowered his window and told me "go on, I want to watch." I replied with a "You are rude. Stop staring." He replied "I have not seen how a wheelchair goes in the car. I am watching". I was mad at this point and said "The show is over. I will not get in my car until you leave or stop staring". This exchange is somewhat dangerous. As both Evans and Crippled Scholar pointed out it is not wise to refuse to engage with typical others curiosity. Such rejection is not taken well. Refusing to play the part of entertaining and meek cripple is unexpected. 

    I find it impossible to imagine that I am the only average crippled man in America who rejects a stigmatized identity. Evans and Crippled Scholar demonstrated I am not alone. That feeling warms my soul. Imagine a world in which we cripples could blurt out "your'e a dick" or"fuck off". Bipedal people's head would likely spin off their body. The shock would be palatable. Instead we are deemed to be "bitter", "angry", "uncooperative", "nasty", or have a "cripple's disposition". This is correct. I feel all these emotions when I am perceived to be less than human. 

    Wednesday, December 16, 2015

    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". Link 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: 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. 

    Wednesday, December 9, 2015

    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.

    Tuesday, December 8, 2015

    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 4th 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: 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: 

             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.

    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.