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Friday, January 23, 2015

On Ableism and 'Trouble Luggage"

Travel for people with a disability is rarely routine. I am acutely aware of my disability every time I travel. No matter how extensively I prepare, problems abound every time I use a plane or train and stay in a hotel or motel. My good friend Stephen Kuusisto wrote an outstanding blog the other day, "Blindness and Blogging". Link: Kuusisto used (invented) a term I have never heard of: travel luggage. Every person with a disability that exits their front door has luggage--none of the luggage is good nor desired. The luggage Kuusisto refers to is the stigma, segregation, disrespect, skewed social interaction, power imbalance, ignorance and complete lack of respect for people with a disability. We people with a disability are firmly planted in the "special needs" category. Special here means inferior sub standard service. For me, my wheelchair and my presence is an unwanted problem that must be navigated. Note I wrote my wheelchair. I have long known a wheelchair is a portable social isolation unit. Few people see me, the human being, using my wheelchair. My invisibility cloak or portable social isolation unit was in over drive when I took an extended weekend break in Boston. I met a wonderful scholar whose work I deeply respect and hopefully have formed a new friendship. In short, it was a great trip.

Here is the proverbial but. Navigating the city of Boston is difficult and easy. Remarkably the subway works really well. Like all cities, curb cuts are hit and miss. A curb cut can exist on one one side of a road but not the other. Ramps to nowhere abound. Accessible entrances are often remote or obscure. The bipedal hordes that surround me can be polite and friendly or dense in the extreme. News flash: wheelchairs do not move laterally. And for those bipedal people standing in the middle of a curb cut--just because you choose to ignore my existence does not mean I cease to exist and will in fact need to get up the curb cut being blocked by your supposedly superior body. Oh I could go on a for pages but you get the point--barriers, social and physical abound. What gets on my nerves are hotels. I stayed at the Hilton Hotel in Back Bay. It is a very good hotel. The Hilton staff were excellent, responsive, and extremely polite. The room I stayed in was well appointed and had a good view. Again, a but. Like many hotels, the Hilton had what I call faux access. Remember, I am a paying guest. My money should go as far as the bipedal people that are paying the same rate. So what is faux access?

Room: As is the norm, the room had too much furniture. The room I requested had a roll in shower and two beds. The bathroom was well planned out and the shower bench was padded--a rare luxury. The problem is that any man or woman using a power wheelchair or scooter could not enter the room. The room entrance was far too narrow and blocked by a bed and closet. I could barely get by and I use about the narrowest wheelchair marketed for an adult. This room is most likely going to be requested by a person using a power chair or scooter. These guests can be told all about the wonderfully accessible bathroom they cannot access. They can also not open or close a window nor adjust the thermostat placed far too high. Of course this is not a problem since they cannot get in the room itself.

Diamond Club: This is the small room where preferred guests can get a free breakfast and drinks and snacks in the evening. The club is only accessible via a wheelchair lift. The lift was the oldest one I have seen in decades and reminds me of the iffy lifts I used in 1979. It took three men to get the lift to work. The lift had no safety features and without visual awareness of where ones feet were an injury was a real possibility. I was able to use the lift only because of my slender profile. Not impressed and somewhat concerned about how I would be able to exit I entered the Diamond club. Cramped with too much furniture I quickly noted the buffet table was impossibly high to access. In fact it was so high I could not see what was in the warming trays. To get coffee, I would have to move an occupied table. To eat I would need to seek assistance. As for the furniture, there was no table I could access.  As is the rage these days, the tables were tall and impossible to use. No complimentary breakfast or coffee for me.

Pool: I like to swim when I travel. I rarely swim when I travel. The hotels I stay in often have a pool I cannot access. The Hilton had a pool lift. They even had a modern wheelchair lift so I could access the exercise room and pool area--a vast improvement over the Diamond Club lift.  But now we come to the wheelchair pool lift. It was pushed into a corner. Access to the lift was not possible however. The lift was pushed into the corner with power motor facing out. It needed to be unplugged, pulled backwards the width of the pool, turned around and then pushed back and plugged back in. I could not physically do this. No employee was in sight. The pool was small and simply not worth the effort.  No swimming of me.

I get the above sounds petty. I get a giant amount of privilege exists. I can afford to travel and the vast majority of my crippled brethren cannot. I should consider myself lucky. This doe not negate the point I am trying to make--a profound disconnect exists when my experience is compared others without a disability. The Hilton's primary concern is to insure it meets the letter of the law. The hotel is compliant with the ADA. Each instance above could be ameliorated via a reasonable accommodation. I could have requested hotel staff assist me getting in and out of the Diamond Club lift. A staff member could have assisted me with breakfast. I could have swam. A staff member could have assisted me. That is a lot of assistance that directly undermines my autonomy.  Access is ever so close but in reality illusive.  The divide between reality as I experience it and those that are bipedal experience it are two very different social experiences. We have come a long way in the 25 years since the ADA was passed into law. The barrier today is not the law but rather the complete lack of a social mandate for the law. The Hilton did their job. They met the letter of the law. Would it hurt the Hilton to consult with an ADA coordinator? Better yet, identify valued guests with a disability and ask them how was access at our hotel? Perhaps each hotel could have one or two employees do a walk through the accessible rooms and access services? Perhaps a hotel employee could get ADA training as part of their job? The possibilities are endless. The desire is non existent. I call this lack of desire willing ignorance and ableism.

Wednesday, January 7, 2015

Obsession with Walking

Google the words paralyzed and walking.  A slew of links will appear that hail recent medical advances implying paralyzed people we be able to walk agin in the very near future. Stem cell therapy and the exoskeleton are the rage these days. Mainstream media outlets breathlessly praises any and all efforts to get the paralyzed upright an walking. This reached a fever pitch last summer at the world cup when a young man in robotic exoskeleton kicked a ball. One and all were enthralled. I just sighed. Yet another story that glorified walking. The message is far from subtle. Walking is good. Wheelchairs are bad. Paralysis is a terrible fate that compromises the life of millions of people. This is grossly misleading. Numerous corporations are experimenting with exoskeletons. They are not conducting such research out the goodness of their heart. There is money to be made selling the idea that all paralyzed people want to walk. People who have no conception of paralysis suck up this idea like nectar of the Gods. When I read stories expounding the virtues of the exoskeleton I shake my head in wonder. Are bipedal people really that ignorant? Sadly yes they are. Your typical bipedal person exposed to a barrage of misleading news stories is led to believe all paralyzed people share one goal in life--walking. Please cue the soaring inspirational music accompanied by the brave and noble young man or woman struggling to walk surrounded by health care professionals, computer scientists, and engineers who share the same ritualized ideal.

The irony of the exoskeleton is that one group of people have no interest in this supposedly ground breaking technology. Come on think. Remember I am the bad cripple. Stretch your mind. Did the veritable light bulb go off yet? Yes, you guessed it. In my opinion the vast majority of paralyzed people have no interest in the exoskeleton. Gasp! Walking has as much relevance to my life as a desire to walk on Mars. There is even a website aptly named Walking is Over Rated. Link:
The exoskeleton is not nor has it ever been about walking. The exoskeleton is about selling an idea, walking, and making money. Corporations exist to make money and are the very core of capitalism. Red Nichols has humorously noted that "my wheelchair is a very capable tool and to be honest, the last thing I want is to be strapped to a District 9-esque robot and become a puppet in some corporation's half-baked execution of an obsession with walking." Link:
Obsession. People in capitalist society are obsessed. Lenny Davis has argued that we Americans admire obsession in others. We revere musicians who obsess over their ability. We admire professional athletes who excel at sports even if their body and brain are severely damaged when they retire. We admire the paralyzed who are obsessed with walking. Think Christopher Reeve who was beloved post paralysis with his single minded goal of a cure for spinal cord injury. In recent months I have noted  multiple stories about paralyzed brides and paralyzed pregnant women. The headlines are always the same and supposedly inspirational. Delete inspirational and think obsessed. Think of the spectacle and symbolism involved. Bride using wheelchair going down the aisle is not a good visual. Bride going down the aisle with flowing wedding dress and walking is a tear jerking event. The latest paralyzed bride portrayed in the media is Tami Martin. She was paralyzed in a car accident and is a very low level paraplegic. In the last week dozens of stories have appeared in mainstream news outlets. The headlines are exactly what one would expect: "Paralyzed Bride Walks Down Aisle", "Dream Come True: Paralyzed Bride Defies Doctors." All these stories fit squarely in the inspirational category that glorifies walking as the one and only ideal. The more obsessed you are with walking the better. Add in the visuals associated with weddings and the obsessed bride who wants to walk down the aisle is revered--a real life American hero.

The flip side of the obsession with walking is not discussed. No one wants to talk about the gritty reality people who cannot walk are forced to navigate. No one wants to think about the barriers to health care and appropriate adaptive technology. Paralyzed people who want to be ordinary are a problem. They are stigmatized for their failure to follow the societal script. Worse, they force others to obey the law, the ADA in particular, that prohibits discrimination against people with a disability. Like typical others we people with a disability want to be able to work, own a home, and have unfettered access to mass transportation. For this to happen disability must be placed in the larger societal, historical, political, and medical context. It requires a completely new way of looking at disability. It requires people to think. It cannot be reduced to a sound bite on CNN. The general public wants to be sold a bill of goods that borders on fantasy. The video below of Olympian Amy Van Dyken-Rouen is typical of the reality that does not exist for 99% of people with a disability.

I love to cook. I am a foodie. I do not have nor have I ever met another person with a disability that could even dream of affording this kitchen. I am thrilled the technology exists. I am equally thrilled top notch adaptive sports gear exists for paralyzed people. I know fantastic light weight wheelchairs exist as well. The same can be said for power wheelchairs. Adaptive gear that empowers people with a disability exists. Yet I know no one that can afford the sports gear or wheelchair they know could enhance their life. We are forced to settle for what is covered by health insurance and affordable. This is never discussed. Instead we try to force millions of people with a disability to adapt to the physical and cultural environment hostile to our presence. In fact the only way to fit in and be accepted is to obsess over walking. I refuse to play this game. I resist and always will. I am quite happy with my body. I do not care one iota that I will never walk again.  My wheelchair, though dated, is a wonderful piece of technology that has served me well. Come on bipeds, get over yourself. Think and imagine what life can be. Stop obsessing over walking and use your creative mind.

Tuesday, December 30, 2014

The Right to Die

I find the notion that one has the right to die impossible to disentangle. Death is not a right it is a biological inevitability.  All humans that are born will die. Death is inevitable. The so called right to die is incorrectly framed. People want to control how their life will end. Superficially, this makes sense but typically people die in a hospital or nursing home after a long physical decline. According to various sources, only 25% of Americans die at home. What the right to die really involves is a primal desire for control. In my opinion the belief a person can control one's death is narcissistic in the extreme.  As I have noted many times, we do not live or die in a social vacuum. Our death has meaning that extends well beyond the person that has died or is dying. Our lives are not equally valued, a fact those that advocate for assisted suicide legislation refuse to acknowledge. Bias exists in many forms. For me, the bias I deal with on a daily basis is called ableism. I rarely hear this term. In fact the only place I hear this term is on university campuses. Fred Pelka, in the ABC-Clio Companion to the Disability Rights Movement, defined ableism as follows: "Ableism is that set of often contradictory stereotypes about people with disabilities that acts as a barrier to keep them from achieving their full potential as equal citizens in society". 

Ableism is deeply ingrained into the fabric of American society. Ableism is everywhere. It is in our language and use of metaphors. It is in the built environment. Ableism surrounds us and is impossible to avoid. I come across the worst sort of ableism and I do not even need set foot outside my door.  I continue to research and write about the death of Tim Bowers, a man that experienced a severe spinal cord injury and died within 24 hours. I was looking for follow up stories in small town Indiana newspapers where Bowers lived and died. I discovered a dreadful article about life as a quadriplegic in the Indy Star. Here I refer to Marisa Kwiatkowski entitled "He Had the Right to Die. But Could He?" Link: This article can only be characterized as ablesim run amuck. The article is about Arun Goel and his family. In 2001, Goel broke his neck and as a result is a quadriplegic. Goel had recently retired from a practice in cardiology and his wife, Sarla was a pediatrician. The main reason the article was published was because Goel's daughter, Malini, recently made a short documentary about her father, "Should Tomorrow Be", that won best shorts competition at the Mallorca International Film festival.  I have not seen the documentary which is apparently based on films taken at the point of injury and recovered many years later.

I have no idea what sort of life Goel lived before or since his injury. All I know is he has an upper level injury and experiences the typical complications. I have no issues with the family.  I do have serious issues with Kwiatkowski. The language used in her poorly written article is deeply objectionable. The emotional rhetoric is over the top.

I quote:

 "Tears leaked from the corners of Dr. Arun Goel's eyes, pooling on the pillow under his head. He couldn't brush them away. His daughter, Malini, wiped his cheeks for him. She caressed his forehead. That gentle stroke of her fingers was more than just a tender gesture between father and daughter. It might be the last moments they spent together". 

Stunning words even for a small town newspaper. What this conveys and is designed to prompt is quite obvious; in a word pity. Goel's injury "left his mind intact" and required "life sustaining treatment". Equally obvious leap in logic--his injury is a nightmare of the worst sort, a mind intact in a body that can do nothing. Oh the horror. But wait it gets worse. Goel's injury gave him "the legal right to decide whether to continue receiving that treatment. More painfully blunt, Arun had a choice: life or die". Oh please. Every person has the right to receive or refuse treatment. If a typical person had an infection they could refuse to take an anti biotic and untreated would become a life threatening condition. The only difference between Goel and a typical person is that his life as a quadriplegic is inherently different. Different here means less valuable as in his life does not have the same value as a person that is bipedal. I know this because Kwiatkowski thinks Goel's life is "a story of love, of family, and maybe, of incredible will power." This is ableism in its purely emotional form. Goel is a tragic figure of epic proportions. Nothing could be worse than a spinal cord injury. Kwiatkowski breathlessly noted: "Arun, who had walked four miles on the treadmill the day of his accident was a quadriplegic. He would never walk again. The 62 year old couldn't scratch his nose, hug his family, or wipe aways his own tears". I cringed inwardly when I read those words. How misleading. A second reference to Goel crying and tears. And no hugs? I am sure his family hugged him many times. Why people even hug me. Amazing? I think not.

The article blithely moves on to 2006 when Goel decided to die. People flew in from all over the world to say good bye. His family pleaded with him not to die. Goel did not want to be a burden. He feared living in a nursing home. His family tried to bribe him to live with offers of getting him a puppy or taking a trip to France. Goel supposedly told his family dependency was a disease. The family had signed living will stipulating that neither spouse would receive more than three months life sustaining treatment. According to Kwiatkowski, "he decided to exercise his legal right. He decided to die". This is grossly misleading. This too is ableism. It is simply assumed life as a quadriplegic is a fate worse than death. Goel had suffered enough. But wait there is more! I sound like a carnival barker. Goel decided to live and in 2007 he received a diaphragmatic pacemaker that enabled him to breath on his own. This is life changing for a quadriplegic. Not for Goel though--doctors told him his life expectancy was six months to a year. This estimate was made nine years ago and places Goel firmly in the miracle category. His disability and life are individualized. No one wondered about the life changing ability to breath off a ventilator. No one asked why would he require nursing home care. Why did no one deem Goel depressed and in need of psychiatric care and perhaps medication? All that people saw was what he could not do. Apparently Goel's "diagnosis" prevents him from venturing far from home. His wife, Sarla, is apparently his primary care giver and according to Kwiatkowski "takes him to restaurants, concerts, or galas 10 to 12 times a year". The phrase here dehumanizing and infantilizes Goel.

At age 70 Goel apparently has mixed feelings about life. Unlike others his misgivings are about the choice to live or die post spinal cord injury. Again, this is ableism. When I think about my life I never frame it as pre and post paralysis. In fact no one I know does this. Life is what you make it. All people have strengths and weaknesses. My disability, like all others with a disability, is about much more than what my body cannot do. Walking is not relevant in assessing the contributions I have made. Is my disability a variable? Of course as is Goel's but it is not how I frame my existence. Disability is a part of my identity--note the word part. What bothers me is not the physical deficits I adapted to long ago but the social consequences of disability. I decry the fact a wheelchair often acts as a portable social isolation unit. I abhor the fact many lives have been lost and no one seems to care about this outside of the disability rights community. Articles such as the one I have deconstructed are counter productive and represent a real missed opportunity. Like I said ableism run amuck.

Saturday, December 27, 2014

Access Fail of the Year

I traveled a lot during the 2013/2014 academic year. I was on the West Coast not once but twice. I was in Boston, New York, City, Baltimore, Washington DC, Atlanta, Hartford, New Haven, and other cities. Travel for a a paralyzed man is never easy. Airline personnel are typically hostile to my presence. Problems abound each and virtually every time I fly. Hotel staff often appeared shocked a middle aged paralyzed man can travel alone and expect an accessible room to be ready upon arrival. Cabbies nationwide are nasty and more than once a cabbie sped by or wanted money to put my wheelchair in the trunk. Bus drivers as a group are better but lifts are supposedly broken or the driver has no idea how to tie down my wheelchair.  In short problems abound when I hit the road. I thought about this last night. My left hip woke me at 4:30AM. It feels like  hot poker has been placed on my hip. A pronounced pain is present. Not much can be done about my pain. Actually there is nothing I can do.  The only mediations that work dull my mind and put me in a stupor. I prefer the pain to a dulled mind. To pass time and wait for the sunrise I thought about the worst access problem I encountered. There was a high end hotel in Boston I stayed at. The bed in the accessible room was so high I could not make the transfer from my wheelchair onto the bed. The box spring was removed and I learned how important a box spring is that night. I did not sleep at all and as a result performed poorly at a public meeting. There was another hotel that accessible entrance was through the luggage room. Each and every time I went in or out about 50 bags had to be moved. There was a aisle chair to get on a plane that was so old and worn out that I had a person sit on it as I was concerned it could not hold my weight. There was a rent-a-car with hand controls that was lost and took two hours to find (it took longer to find the car than it took to fly from New York to Detroit). I checked into an accessible hotel room in San Diego that had so much furniture in it I could not get to the bed. I realized the hotel had used the room to store furniture. Ah, to be such a valued customer. To be fair I had a select number of good experiences. Select as in very few. The gold star for meeting and exceeding my expectations was the Red Roof Inn in Syracuse.

None of the above problems came close to the worst experience I had this year. The worst experience I had was in fact not that bad but is indicative of why access remains problematic. I skied a few times last winter.  Like other skiers, at the end of the day I am sore. If possible I like to swim after I ski. It relaxes and warms my body. Swimming is a real luxury in the winter after skiing. Typically, high end hotels have a pool. Somer resorts even have a heated pool outside. For me, this is the ultimate in luxury. It is very rare I can swim after skiing but I tried to last year. I skied near Syracuse and stayed in a mid level motel because it had a pool. I made the reservation solely because of the pool. I called and wrote prior to making the reservation. Yes, the pool is accessible. Yes, the lift is operating. The hotel staff was correct, the lift did operate.  Upon arrival I knew I was in trouble. The motel was a bit run down. It had clearly changed hands many times and the ramp to the front desk was way out of code and steep. I had a room on the first floor next to the pool. I walked into the room and the overwhelming scent of chlorine filled the room. There was no window to the outside. It was bad but would not kill me for one night. I was tired and had no interest in checking out and then finding a new motel in the dark. The pool was easy to find as it was next to my room. As I entered the pool room the smell of chlorine was over powering.  I could see the pool. It was big. It had a lift that worked. There were also 4 steps to get the pool level. I went to lobby and asked where is the accessible entrance to the pool. The employee had no idea. She called the manager. He came to the desk and told me he had no idea how I could get to the pool. He then asked "So, you cannot walk up the steps at all? We can carry wheelchair up the steps and then you can get back in. That is what we have done in the past". Sorry, but no I can not walk or stand. A puzzled look resulted in the manager calling the head of maintenance. This man appeared and he had no idea but suggested house keeping might know. At this point there is a small quorum of people. All are perplexed. All agree this is the most unusual request ever made. It is as though I am the only paralyzed person on earth. And here is the core issue: my "request" is individualized. Not one person present was making the leap in logic required that would negate this so called problem in the future. My request was not all about me but rather a disenfranchised class of people who are protected by the law. The law is called the Americans with Disability Act. They were breaking the law and they had no clue they were violating my civil rights.

 I was not expecting the people at the motel to understand the larger implications of a pool lift that was not accessible. They were just doing their job. At issue for me is the ingrained ignorance and social exclusion. Disability history and culture is simply not taught in secondary schools and is rarely part of a collegiate education. As a result, disability is rarely if ever framed as a matter of civil rights. Limited access and the social isolation it creates are blithely accepted as the norm. I am a problem that needs solving. Sorry, but no. I am not a problem. I am a sentient human being. I have the same rights as any other American. I have the same rights as any other guest that checked into the motel. What took place at the motel was typical. Access problems abound. I cannot travel without encountering barriers social and physical. I am well aware that the way I approach barriers that abound is complex for I am not a single individual. I am the very representation of all things disability. I am a token, a memorable person that represents all people with a disability. If I get angry all men that use a wheelchair are mad at the world. If I am firm and forthright I am a difficult customer. People, typical bipedal people, do not get it and some days I think they do want to get it. My experiences are far from unique. Liz Henry wrote about the lack of accessibility at technology conferences. Like me, she has been going to conferences regularly for many years. Has progress been made and is disability inclusion valued? In a word no. Henry wrote about a typical experience, one that every person who uses a wheelchair has had:

I ask a hotel employee. I ask another conference goer. I find a conference organizer. The hotel people go and find other hotel people. There is a hubbub. Facilities people with walkie-talkies show up. I am polite and not angry, over and over. Everyone stands around wondering what to do. There is a freight elevator that is locked that you can only get to from the back alley around an enormous city block. I end up in the basement. There is a tiny airlock-style lift but it’s locked and no one is sure who has the key. I demand the key. Consternation. No one has ever thought about this, ever, in the history of the known universe!
I often INVITE able-bodied strangers and friends alike to find, and ride, the locked, blocked, garbage-filled elevators in the basement with me; to stay by my side and witness how it goes. I have to laugh all the way through it. It’s more than inconvenience. Crappy access says, like a slap in the face, that we aren’t wanted and no one gives a fuck.
I had to laugh when I read Henry. I get a perverse sort of pleasure when typical bipedal friends get an inkling to what my life is like. I often joke, welcome to the land of disability. Locked elevators and bathrooms abound. Elevators filled with trash and cleaning products are common, obscure entrances to buildings and other access adventure exist; for example lots of trips through tunnels when navigating universities and huge conference centers. I regularly see the worst parts of some of the best buildings. In a way it is interesting but there is no question the lack of access is a slap in the face. This metaphoric slap is fueled by ignorance and a lack of information. Most venues I visit all state they are accessible. To a degree this is correct. Theoretically one can navigate freely but no one know how to get from the lobby area to the bar, pool, health club or restaurant. No one knows if there is an accessible podium where I will be speaking. No one knows the nearest bathroom to the room I will be speaking in is on a different floor and requires the use of an elevator. No one knows if the nearest subway or bus stop is accessible. No one knows if the airport shuttle bus is accessible. No one knows if the pool has a lift. No one knows where the elevator is when I encounter a sign that points down to an impressive stairway to where I want to go. Sure you can get in--sort of. Like Henry, what I have learned if there is an information black out "that tells me right away I'm heading for a world of alienation, in a place where no one has put thought into accessibility".

What Henry describes is exactly what I have experienced the last three times I have attended the American Society of Bioethics and Humanities (ASBH) annual meetings. There is no disability  diversity. I rarely if ever encounter another scholar with disability. There is a good reason for this. It is no different from the worst access fail I described above. Scholars with a disability are alienated for good reason. Staff organizing the ASBH meetings treat access issues as an individual problem. Any input from scholars with a disability is rejected. So called access "problems" would not arise if a modicum of thought was spent on access--something I have thought about for nearly 40 years. Some professional organizations think about access issues, the ASBH does not. It never has and I doubt it ever will. The utter lack of interest in access at ASBH meetings is by far the worst of any professional association I have ever been involved with. No information is provided about access. How about a wheelchair route map to the ASBH registration desk? Nope. A list of accessible taxis and bus routes? Nope. Signs pointing out accessible paths to frequently used locations? Nope. Does anyone know how to unlock elevators or bathrooms or is there a contact person available? Nope. Are distances included in maps? Nope. Are microphones lower so wheelchair users such as myself can ask a question? Nope. Are ASL interpreters and CART provided? Sometime yes, sometimes no; and if provided is the deaf scholar followed by ASBH staffers to insure they are getting maximum bang for the buck? Yes.  Are conference materials provided in a screen readable format? Nope. Is the app for the conference screen readable? Nope. Are a list of nearby accessible restaurants made available? Nope. The list goes on and on. Not one but two ASBH presidential task forces on disability have been created. I was part of one. Hundreds of emails were exchanged. Telephone conferences were held. Were concrete suggestions enacted? Nope. Were the task forces on disability used to exhaust scholars that wanted to be involved in an effort to make them give up in frustration? I do not know. Here is what I do know: if I am the only person present at a conference using a wheelchair I am mad. I am mad because I know access is not valued. I know without question the professional association is doing something very wrong. Here is a radical idea for the ASBH: stop complaining about cost of CART, ASL interpreters and how access is the hotels problem and that the ADA does not apply. Please just stop, think and do something to be inclusive. Demonstrate that scholars with a disability are valued members of the organization. The ASBH is failing and has failed for quite some time to be inclusive to scholars with a disability. Within the small population of scholars with a disability when access issues and the ASBH are mentioned there is often stony silence and an annoyed roll of the eyes. More than once I have heard "That organization sucks in terms of disability access. I never go, its just not worth the hassle". I am perplexed. No one at the ASBH wakes up in the morning and thinks lets alienate scholars with a disability so they will not attend the meetings yet this is exactly what they are doing. Thoughts that come to mind at 4:30AM are often deeply embedded. My alienation is as heart felt as it is unwanted and unnecessary.

Sunday, December 21, 2014

Mortality: It's About Living

Brittany Maynard has quietly slipped away from the media's attention. For me and many others opposed to assisted suicide this is a great relief. I spent far too much time talking, thinking and writing about Maynard and the slick ad campaign waged by Compassion and Choices. I wish her family well as they endure the grieving process. I know all too well grieving the death of someone you loved is a never ending source of sorrow. I have been pondering end of life issues the last few weeks. Winter is settling in where I live. The days are short and the nights are long. It is cold and crisp. The end of the year is near and this always makes me retrospective. I miss my son who lives in Seattle and he will be celebrating his first adult Christmas away from home. I have been looking at many cherished photos of him when he was a little boy. He was a cute kid but a royal pain in the ass for his secondary school teachers to handle. Think smart and subversive and that is my son. The apple does not fall far from the tree. I am happy to take my share of the blame or credit and this has me thinking. What sort of job did I do as a father? What will he remember? Will he remember how I lived or died?

Mortality is something feared but ever so much a part of life. Ashes to ashes dust to dust--famous poetic words that do not appear in the Bible. The phrase appeared in the Book of Common Prayers. Oh, its biblical for sure. The entire phrase reads as follows:

In sure and certain hope of the resurrection to eternal life through our Lord Jesus Christ, we commend tp Almighty God our brother [name]; and we commit his body to the ground; earth to earth; ashes to ashes, dust to dust. The Lord bless him and keep him, the Lord make his face shine upon him and be gracious unto him and give him peace. Amen. 

Peace, graciousness, and tranquility. I wish this for all those approaching the end of life. Those that advocate for so called death with dignity legislation or the legalization of physician assisted suicide make me shake my head in wonder. Rather than being paragons of virtue, I find those that claim "My life, my choice my death narcissistic if not dangerous. There are just too many my's the the4 Compassion and Choices tag line. Life is not about death. Life is about living. Life is about squeezing out every ounce of energy from our body. Life is about living to the fullest from the second we are  born to the second we die. The method of our death means little. Here I refer to the physicisal process of death which is typically a long slow arduous decline to oblivion. I for one do not want to be remembered for how I die but rather how I live. Sadly, Maynard will be remembered for how she died. I find this tragic. No one should be remembered for the way they died. It is a tiny part of one's life and typically not within our control. Living is the hard part and death should celebrate a life led. Maynard do not need to end her life as she did. Other options existed. Other options existed for others who have brain cancer. While Maynard's end of life story went viral another story was largely ignored. Adam Purmort lived and died in Minneapolis. He was married and an art director. He had a son. He also had brain cancer and died. He and his wife Nora created a website My Husbands Tumor. Link to the archive:  Purmort must have been a fun man to hang around with. I loved his obituary in the Star Tribune. No tears, not dull, just irreverent:

Purmort, Aaron Joseph age 35, died peacefully at home on November 25 after complications from a radioactive spider bite that led to years of crime-fighting and a years long battle with a nefarious criminal named Cancer, who has plagued our society for far too long. Civilians will recognize him best as Spider-Man, and thank him for his many years of service protecting our city. His family knew him only as a kind and mild-mannered Art Director, a designer of websites and t-shirts, and concert posters who always had the right cardigan and the right thing to say (even if it was wildly inappropriate). Aaron was known for his long, entertaining stories, which he loved to repeat often. In high school, he was in the band The Asparagus Children, which reached critical acclaim in the northern suburbs. As an adult, he graduated from the College of Visual Arts (which also died an untimely death recently) and worked in several agencies around Minneapolis, settling in as an Interactive Associate Creative Director at Colle + McVoy. Aaron was a comic book aficionado, a pop-culture encyclopedia and always the most fun person at any party. He is survived by his parents Bill and Kim Kuhlmeyer, father Mark Purmort (Patricia, Autumn, Aly), sisters Erika and Nicole, first wife Gwen Stefani, current wife Nora and their son Ralph, who will grow up to avenge his father's untimely death. A service will be held on December 3, 2014 at Shelter Studios, 721 Harding St. NE, Mpls 55413 at 6 pm.

When Purmort and his wife wrote the above they laughed hard and cried harder. But they had fun and celebrated a life well lived. When Purmort died his wife posted the below on line. I dare you to read this without tearing up:

It’s over.
It wasn’t a war or a fight. Those things have rules. This was more like Aaron getting in the ring with the Mohammed Ali of cancers, and smiling for round after round after he got his teeth knocked out and his face rearranged. 
It ended today at 2:43pm, in the middle of a run-on sentence, my head on his heart and my arms around him in a hospital bed built for one, but perfect for the two of us. We’ve spent the last three years in a variety of hospital beds. We were engaged in the light of a heart rate monitor, snuggled together just feet from his mother on the night of his first seizure. He let me sleep next to him before brain surgeries, even when I was 8 months pregnant and my belly pushed on his IV cords. Our Ralph crawled for the first time in a bed on the oncology floor, desperate to get to the laptop where we were watching The Sopranos after Aaron’s infusion. We snoozed and watched countless movies and TV shows in those little beds, which somehow never felt too small for our tall bodies. Yesterday I spent hours in bed with him, playing songs we loved and remembering stories from our relationship, thanking him for everything he brought to my life and letting him know it was okay to go and chill in the other world with our baby and my father.Today we took our last nap in our last hospital bed, in our home, under a blanket that Megan sewed for our wedding. 
It’s okay. It’s okay. Thank you. We had so many good years. Not enough, but really good years. You were so good. You were so good to me. I love you. I’ll keep you in my heart, forever. It’s okay. He breathed out, and I readied for the sharp inhale that would follow 8-10 seconds later, rattling through his body. It never came. That’s how it ends. One quiet second.He was here, and then he was gone. It was tangible, this sudden hole that appeared in the center of the universe when he left his body to become everything all around me, just as he promised to do.But we are stardust, and our bodies are just vessels to help us navigate this earth and to eat Taco Bell. I laid with his body and soaked in his warmth. We dressed him in head to toe J.Crew and his best Nike Dunks. I didn’t even know they cremated you with your clothes, but he’ll be all mixed together with some of his favorite things and the finer things were very important to this man. 
Before his first surgery, I stole a marking pen from the surgeon and drew a small heart on his hand. Not so much to reassure him, but to reassure myself. Tonight, I found the same one deep in an old  make up and at the urging of his mother, left the same small heart for him with the same stolen marker. I know what Aaron always knew: it might not be true right this second, but it’s going to be okay.
I admire this man. He did not turn his end of life into a made for media event. He and his wife celebrated his life. They had fun writing an obituary. Really, who does this? Few have this sort of wild creativity. What struck me the most though, was that Purmort's son will be able to go back and read about how his parents met, what music he liked, his work life, and how how he died. His death that was not funeral dirge but celebration. Purmort was the antithesis of Maynard. While his end of life experience got some media attention it was dwarfed by Maynard. Everyone had an opinion about Maynard--positive and negative. Purmort made people laugh and think. He enjoyed life to the fullest and died in the arms of his wife. He led a life worth living. A life worth living. That is what people should be remembered for.

Wednesday, December 10, 2014

Social Safety Net and Fear: Be Very Afraid

As I write these words snow is falling heavily outside my window. Think winter wonderland gorgeous in every way possible. Silence reigns. The animals are hunkered down for the time being and it is silent outside. Rather than enjoy the beauty of the winter landscape I love so much I am agitated--highly agitated. A few hours ago I read an article by Andrea Louise Campbell, a professor of political science at MIT, entitled "How Medicaid Forces Families Like Mine to Stay Poor". Link: Two thoughts have dominated my mind:

1. How did we as a society allow the social safety net to be warped into a penurious system that keeps people with a disability on the edge of disaster?

2. Why are disability rights perceived to be an onerous burden that we begrudgingly and with great resistance supposedly meet?

In the article by Campbell, based on her book Trapped in America's Safety Net she details what took place to her sister-in-law after she had a car accident. At the time her sister-in-law, Marcella Wagner, was seven and a half months pregnant. Remarkably the baby survived the accident as did Wagner. However Wagner experienced a severe spinal cord injury that left her a quadriplegic. Campbell initially thought she would be able to provide her sister-in-law with a lot of help. She was after all a professor at MIT and had taught social policy for many years. What she discovered though was quite different. She could provide little help.

Adapting to a spinal cord injury is not easy. The higher the level of injury the more complex and expensive life becomes. The difficulty adapting to a SCI extends well beyond the body.  Forget the physical adjustment. Forget the stigmatized identity and the diminished social status. Over time the vast majority of people who have a SCI eventually adapt. Today however newly minted cripples enter an even more hostile world than the one I adapted to long ago. Campbell vividly detailed the harsh reality her sister-in-law encountered:

The accident caused more than the physical and emotional devastation that upended Marcella's career plans. It also brought about an economic tragedy that hurtled her young family into a world of means tested social assistance programs, the safety net of public programs for the poor... The  programs Marcella now needs as a quadriplegic have helped her in many ways, but have also  thrust her, my brother, and their young son into poverty, with little hope of escape. Until this accident, I did not realize the depth of the trap.

Ah, welcome to the land of disability.  Our current means tested social assistance programs are designed to keep people with a disability impoverished and on the edge of disaster. Immediately following her injury it was clear to Campbell that her sister-in-law's career plans were in tatters. She, her husband, and infant were going to have to be impoverished to survive. They were told to get rid of everything they owned, spend down, and declare bankruptcy. Campbell wrote:

In order to get poor people's health insurance, Dave and Marcella must stay poor forever. Marcella qualified for Medi-Cal because she is disabled, but because Medi-Cal is for poor people, Dave and Marcella have to be poor to receive it--they have to meet the programs income test. Counterintuitively, meeting the income test does not mean having enough income (as in doing well on the test), but rather having low enough income. The income test is actually an income limit. 

Again, welcome to the land of disability. The poor are not to be trusted. Those with a  disability cannot be trusted. Do not exceed the allotted number of catheters per month. You had damn well better hold onto the receipts and be able to demonstrate you have used up the allotted amount.  If you need more be prepared for a mountain of pile work and documentation.

The system is punitive in a myriad of ways and while it helps it hurts and grinds people down.

Assets cannot exceed $3,150.

Money cannot be used to pay student loans or household bills.

One cannot save for retirement.

An emergency fund cannot be created in the event they have a household or personal emergency.

One cannot save for a child's education.

A family member cannot pay for their niece or nephew education. That would be considered income.

Any inheritance for their son would go to Medi-Cal.

In short, Campbell's sister-in-law and brother are barred from doing what everyone else in America tries to do--save for retirement, pay for their child's education, and earn as much money as possible or desired.

Campbell gets to the bottom line, a twisted bottom line at that.

America's social assistance programs are stingy and difficult to access because of an age-old suspicion of the poor. They are designed to be less attractive than work. One problem is that they are so miserly as to be impossible to live on. For a disabled person like Marcella, whose expenses will be greater than for an able bodied person, the limits are truly problematic. And because insurance for the poor is the only source of the long term supports and services the disabled need, they get caught up in the anti-poor dragnet as well. 

Campbell put the perfect face on why so many paralyzed people are forced to live in poverty. That is live in poverty forever. To raise children in poverty. To be unable to have careers. To lack the ability to get a higher education. To travel. The list of impossibilities is heart breaking. Worse, is the cost of empowering technology in the form of a wheelchair. Sure it is covered but not an appropriate wheelchair. A used power wheelchair costs about $25,000. Need a wheelchair cushion to prevent pressure sores? Good luck. For me I must have a demonstrated medical need. That means being hospitalized with a pressure sore three times in one calendar year. Yes, to have a cushion designed to prevent pressure sores one must develop a pressure sore first and do so three times. Need to renovate your home to be wheelchair accessible? Good luck. Create a fund raiser because those funds are not going to appear.

Campbell and others come to a basic conclusion: American social policy is rotten to the core. So on this lovely day as I look out at a thick blanket of snow and I get it. I really do. Crippled people are unwanted. Corporations consider us a drain on profits. Our elected officials think we are crooks looking for a free ride. The poor and disabled can't be trusted. Our desire to be connected to the community is cut off--go to the nursing nursing home from which you will never emerge. Mass transportation is too expensive. A lift on the bus? Sorry you are not worth it. Housing that is accessible. Dream on. Campbell did a great job putting a human face on what can happen. It is instructive to "read through the heart breaking stories" and the "many similar horrible situations, including many who thought they had good health insurance until a catastrophic accident or expensive medical condition proved otherwise". I wonder though, are such stories helpful. Some will dismiss it as anecdotal and not an accurate representation of the social safety net. My real fear is such stories will be counter productive. People have always feared disability. The story Campbell's sister-in-law only heightens that fear. If people cared, that is if people wanted to have the elderly, poor and disabled as vibrant members of society, we would not have accepted a rotten social support system. Campbell is correct--rotten to the core. Leave it to me to spoil a wonderful day.

Sunday, December 7, 2014

Home, Society and Exclusion

Last Friday night I went to a Christmas tree lighting ceremony. It was mercifully short. It was a typical Central New York small town affair. There were gaggles of teenagers running around. The small crowd was dominated by mothers and fathers with little children, many being carried or in strollers. Everyone was congregated in one area. All the town shops were open. High school and middle school kids were selling a wide array of over priced goods. This is not a critique: as a parent I helped my son sell plenty of popcorn, Christmas wreaths, manure, and wrapping paper in support of his school or Boy Scout and Cub Scout activities. I kept my wallet firmly in my pocket, head down and Kate close by my side. One and all appeared to be having a good time. I was miserable. Really truly unhappy. I was not miserable at the time. Sure I was a little cold and wet but was happy to see two close friends. We watched the tree lit up from afar. We chatted and slogged through a crowd to get to my car. All in all a pleasant evening.

Like many, I struggle during the holiday season with depression. For weeks I have been quietly unhappy. I have no reason to be unhappy. I have a lovely little place to live. My neighbors are friendly and kind. I know most of the neighborhood dogs. There is a chocolate lab named Laker that reminds me of my old yellow lab Burt. Laker is dumb as a post just like Burt. Laker is also loyal in the extreme. I love my job. I have outstanding under graduate students and fascinating graduate students. I have the support of my peers at work. The university where I work is an outstanding university. I have a small but tight knit number of friends who live nearby. I go out on a regular basis and have shared many fine meals with friends. I have thought provoking discussions with my colleagues and students. And yet I am miserable. I chalk this up to the season of cheer. I work hard at convincing myself I should be cheery. This effort rarely works. I bury myself in work and books and ethical conundrums with no solutions. I have cleaned my house today to a high shine. I vacuum daily and polished my kitchen floor before sunrise. All this provides relief but not a cure to the misery in my soul.

I was awake most of the night lost in thought. My brain would not turn off. What is wrong with me? Why can't I be happy like everyone else? Why can't I be content? I gave up the pretense of sleep at 4AM. A gorgeous sunrise lifted my spirits a little.

Along with this lift in mood I made connection via a book I recently read, two short essays, and of all places a long thread on Facebook. Essentially the proverbial light bulb went off in my mind. I realized I have no home. I had a loving home as a child. I was blessed with ideal parents. The home I grew up in felt real. In fact I still have a deep connection to the house on Rich Bell Close. Yet the notion of home has slipped away from me as my body became increasingly dysfunctional. Another variable is that I never expected to live an adult life hence I did not think about the concept of home very much. Fast forward a few decades and here I sit a middle aged man and come to the harsh realization I have no place to go that makes me feel good. There is not at this time a physical or social environment that makes me relax and feel at ease. I have no sense of home. I do not care about the house where I raised my son. I do not care about the place I reside. I do not care about Hofstra or Columbia University where I spent my youth and early adult life. Worse, I have almost no connection with others. By connection I mean a deep bond that defies logic and enables one to share deep inner thoughts. What is wrong with me? Where have I failed? Why am I alone? Surely the fault lies within me. Maybe not. I made a connection that I think enlightens me and I suspect many others with an atypical body.

The connections I have made are as follows:

First I read Lenny Davis book The End of Normal in which he discusses biopolitics or biocultures defined as "the study of the scientificized and medicalized body in history, culture and politics". This resonated with me in that it sought to undermine something I know all too well--disability is socially constructed and as Robert Murphy liked to joke disability is a social disease. Second, I read a post at Musings of An Angry Womyn entitled "I have No Refuge". Link: This short essay really struck a cord with me. Third, I read a post by Stephen Kuusisto at his consistently thought provoking blog Planet of the Blind entitled "Normal". Kuusisto referenced Davis book and railed against "the tyranny of industrial normal" and speculated we must insist on ending this pejorative construction. Link: Fourth, my experience at the Christmas tree light ceremony in my small town in Central New York.

In reaction to Davis' book Kuusisto wrote:

I’ve been trying unsuccessfully for years to imagine the kind of society that cultural theorist Lennard J. Davis envisions in his book The End of Normal. Briefly: we know race, gender, and disability are social constructions—which means in the widest sense “normality” might be, conceivably, on the ropes. A boxing analogy is appropriate. We’ve been punching Old Normal for a long time. The maddening thing is how “Normal” keeps smiling, taunting us, snarling through his tombstone perfect American teeth. And if you think his teeth are infuriating, well, his odor is worse. He smells like “Brut” and bacon.  

Taunts. Oh how I know all about taunts. I know about social injustice. I know all about stigma, fear and alienation. I have been refused service in restaurants. I am often segregated or directed to special services--special being a code word for inferior, not worthy of real inclusion. The short bus or para transit for you! Social injustice is a daily part of my life and others with typical bodies. I cannot nor will I ever live in a utopia where disability based bias does not exist. In "I have No Refuge" I was struck to read:

There is no hiding for me. I see, eat, hear, taste, smell injustice every waking minute. I live the struggle to keep people with disabilities from unnecessary institutionalization, to keep us from being killed, either by neglect or legislation, to ensure that we are thought of in the building of public spaces, in the Governor's budget, or in time of disaster. 
I have no refuge from fear, exclusion, discrimination, bothering. I cannot shut down. I cannot get away. I'm forever open to it. 

Forever. Think about that word. I often think about forever. Nothing is forever--a very old and trite line. Well for me social injustice is worse not better. Social injustice might not last an eternity, forever, but ableism will not be eradicated in my lifetime. This is where I depart from Davis. He is a first rate theoretician and The End of Normal resonated in my mind. Great book but so what. It did not help me one iota. What is the good of theory if a norm free society does not exist. Reading Davis I was reminded of Thorsten Veblen, an economist by trade and sociologist at heart. I read his 1899 text Theory of the Leisure Class. Veblen was a harsh and humorous critic of capitalism yet never was active in labor politics or social movements. Veblen thought he was merely an observer above the fray. Disability studies scholars such as Davis and other key figures in the field also work as observers above the fray. This is not a critique. We need theory. We need disability studies to be a vigorous field of academic inquiry. We need Davis and other theoreticians. I would suggest we need a lot more than theory. We need to be engaged. We people who work in what is called disability studies need to be socially and personally invested in creating social change. We in short should be leaders of a social and economic revolution. Lives are stake. If we do not become far more active in a boots on the ground style I fear we will all end up like Veblen. He died alone and impoverished in California. No human life should end that way.

I have no idea how to jump start a revolution. Disability is perpetually thought of as a medical problem. The social model of disability is virtually unknown in popular culture. Disability is rarely if ever framed as a civil rights issue. When I try to explain this to others they often reject it out right. Some even laugh at me. The ADA is an unfunded mandate. Disability rights is political correctness run amuck! No one burned a cross on your lawn! No disabled people have been lynched! This is correct. Instead we place people with a disability in institutions and their existence is quickly forgotten. Supposed kindness and care are killers. We continue to design buildings that are grossly inaccessible. Physicians refuse to treat people with a disability. People with a disability often die of physical and social neglect. Schools rely on resource rooms and segregated short buses. Airlines routinely discriminate against passengers with a disability. Wheelchairs are often broken by airlines and disrupt lives for months. Mass transportation remains a challenge to access.

People tell me I am too serious. I need to lighten up and get away and relax. Do something fun I am told. This is sound advice I have heard often. It is not easy to put into action and highlights the cultural divide between those with and those without a disability. When one has a disability throw normal out the window. Want to go out to dinner? Forget Friday and Saturday nights. Good luck dealing with other dinners, narrow aisles that cannot be navigated, and obviously annoyed staff who think you are taking up too much space. Need a bathroom? Dream on. What about going to a concert or sporting event? You must buy tickets through the box office. You leave messages and no one returns your call. At the Christmas tree lighting ceremony all the bipedal people that surrounded me appeared full of good cheer. I was across the street with my friends. I had no desire to be run into or have my view reduced to the backs of people. I also had no desire to be bumped, prodded, blessed or cursed by heavy duty Christians that abounded. Trying to depart was far from easy. People are in their own social vacuum and appear to think it is my job to laterally move around them. Wheelchairs do not move laterally. I get to the curb cut and no one moves. I am not invisible. How I wonder do people think I am going to get by. Excuse me rarely works. People are stunned I can speak. Most ignore my existence.

Go have fun. Sure, have fun in world not designed to be inclusive. Yes, lets try to eradicate the idea of normal. Good luck with that. Normal as Kuusisto noted is taunting us. I am well aware my existence is not valued. This message is far from subtle. On Facebook I described the Christmas tree ceremony and a fellow cripple who I respect suggested I should "be the change you want to see this world" and that I should "honor yourself" and to "be worthy of appreciation from others".  These are nice sentiments devoid of reality. I value my existence. I like my body. I assert my civil rights. I teach. Since the day I was paralyzed I have tried to educate others. I advocate for myself and all those disenfranchised. Like other people with a disability I am the real and symbolic form of resistance. I am the blue wheelchair logo sign. But those blue logos lead to nowhere-- an observation my son made many times as a child.  People do not want to know about injustice. People do not want to think about inconvenient truths that cloud American myths we hold near and dear.  Being depressed seems like a logical response to a world that is hostile to the presence of the atypical body. It is not just me. Try being black. Try being an obese person. Try being deaf. Try being blind. Try being paralyzed. Try being a conjoined twin. Try being gay, transgender, lesbian or bi. Try being different from the norm. Try this and you will realize the end of normal is a pipe dream.