Syracuse University: Disability as Ways of Knowing,Part III

Last Fall Stephen Kuusisto and invited Adrienne Asch to speak at Syracuse University.  Many of Asch's friends knew she was terminally ill. We wanted to honor Asch for her many and important contributions to bioethics and disabilities scholarship. Sadly, Asch was unable to talk about her life and work at Syracuse. She was too ill to travel and died in November.  I will remember Asch for her early and ground breaking work on prenatal testing and selective abortion. With her death, bioethics lost an important scholar.

As part of Ach's proposed visit Kuusisto and I had suggested we have a round table discussion. The three of us would read from our respective work to be followed by a Charlie Rose style open discussion. It was with heavy hearts that Kuusisto, myself and others decided we should move forward with our plan. Hence on October 29 Kuusisto and I read from our work in honor of Asch.  The event was titled Disability as Ways of Knowing, Part III.

Below is a video of the one hour event. I hesitate to post an hour long video but am doing so because many people have been suggesting I post videos of myself speaking. The people have spoken and below is enough Bad Cripple to last an hour though it may seem like a lifetime.

Naive in the Extreme

Last night I read a short essay by Maria Yang titled "People with overt disabilities: Are we more forgiving of their behavior". Link: http://www.kevinmd.com/blog/2014/01/people-overt-disabilities-forgiving-behavior.html Yang describes a flight she took in which a man with Down Syndrome was on the same plane and in the same row of seats. The man is described as child-like, naive, and socially inappropriate.  During the boarding process and flight people tolerate the presence of the man with Down Syndrome. His difference was obvious and Yang concluded people are kind. There are no significant insights in Yang's short essay. Yet I was annoyed by the tenor of Yang's essay. First, the man she described is a stereotype. The adult with Down Syndrome who has child-like enthusiasm for life. Second, I was discouraged by the following quote: "We judge ourselves by our intentions, but we judge others by their actions. For people with overt disabilities or deformities, we are more forgiving of their behaviors because we are more charitable about their intentions. Why do we not do the same for those people whose deformities or disabilities are not visible?"

I could not disagree with Yang more. First, she embraces a charity model of disability. This may or may not be the case but the charity has a central place in her essay. All passengers and airline employees were kind to the man in question. This is wonderful but a rarity. Thus I wonder would airline employees and passengers be as charitable if the person in question was not the stereotype for Down Syndrome. What if this man wanted to hug people instead of saying hi? What if this man spoke in a very loud voice? I do not think the response would have been charitable but rather hostile.  Second, I am taken aback by the line "we are more forgiving of  their behavior because we are more charitable about their intentions". Sorry but no. Charity is often absent when a disabled person is present. Moreover, the history of disability is littered with one nightmare after another usually accompanied by the belief it was in the best interests of people with a disability. Think Buck v. Bell and Willowbrook. Our social system remains hostile to the inclusion of all people with a disability. More to the point I have no interest in charity. We people with a disability do not want charity but rather equality.  We want and value the same things those within the mainstream do and thoughtlessly take for granted. We people with a disability are not a foil so typical people, those without cognitive and physical disabilities,  can feel good about themselves and be "charitable". 

No doubt Yang meant well. Yet based on this single short essay she appears to be hopelessly naive about disability based discrimination that abounds. I am willing to suggest Yang has likely never been on a plane and seated next to a man with Down Syndrome. Based on her experience she assumes much. The passenger and airline crew were polite to this young man and that must be the norm. It is not the norm. It is in fact the exception. When people with a disability, any disability, fly the odds of having a routine travel experience are remote. As I have noted many times, the airline industry has a deeply ingrained bias against people with a disabilities. Overwhelmingly negative experience are the norm. It is easy to find such stories in news papers and on line because they happen every day. People with a host of cognitive disabilities have been prevented from boarding because they represent a flight risk.  Expensive custom made wheelchairs are often broken. People with a host of physical disabilities are routinely humiliated. I for one have crawled off more than one airplane in frustration after an interminable wait for assistance. In recent years I have been asked "can't you walk a little bit".  When the reply is no stunned silence ensues.

I wonder about Yang. Why does she accepts a charity model of disability? Does she really think the trouble free experience the man with Down Syndrome she described is the norm?  At an abstract level I understand why Yang likes a charity model of disability. It feels good to give to the needy, poor, and disabled. It feels good to be kind to the less fortunate. Yang felt good about herself and willingness to be kind to the man with Down Syndrome. That was a mere few hours of her life.  And this is where I get frustrated. The "charitable" experience she described does reflect the reality of life with a disability as I know and experience it.  Thus when I cry foul as I am doing here others, typical able bodied others, often deem me bitter and angry.  This is neat little trick. In classifying people with a disability such as myself that expect to be treated equally and with respect as bitter or angry individualizes the perceived "problem". This obscures and undermines the issue--the violation of the civil rights of people with a disability. Rights protected by a myriad of laws and enforced by the Department of Justice.  If there is a problem it is that we as a society do not value the enforcement of these laws. Now that is something I hope Yang and others are willing to think about. To do so requires a leap in logic too many are unwilling to make.

Long Ago I Fell Out of my Wheelchair...

A long time ago I fell out of my wheelchair in New York City. This rarely happens but heck I will admit it was my fault. I was young and stupid. I was crossing the street, 14th and 5th Avenue near the New School, and it was rush hour. I had just attended a lecture and would like to state my mind was filled with important academic theories and ideas. If I stated that I would be lying. The fact is I saw a shapely young woman my age and was glancing her way as discreetly as humanly possible. I was oblivious to the fact my right front wheel was about to hit a pot hole.  I am clearly not James Bond material as before I knew it I pitched forward, my brief case and papers go flying, and I find myself on the street in the middle of one of the busiest intersections in the city.

I am screwed! Well, no. This is New York City and this is a classic New York City story. Before I can reach for my wheelchair I look up and see a mass of pedestrians circling me. In seconds I am surrounded by people in the middle of 14th street. I am not going to die. In fact I see people collecting the papers that spilled out of my brief case. A man in a business suit tells me relax, take your time getting back in your wheelchair. Others chime in too--don't worry take all the time you need. I adjust my wheelchair and body and realize with a start that not one car is honking its horn. In fact if anything it is strangely quiet for rush hour. Weird. I get back in my wheelchair with slight effort all the time being told by strangers not to worry. Many are urging me to relax. All offer support. I get upright and into my wheelchair, adjust my hips, and someone hands me my brief case. The circle of strangers that surround me all head to the sidewalk in unison. I go up the curb cut and start to think I should say thank you. Before I can utter the words all the strangers are gone. Cars have resumed jockeying for position and honking horns. I sit in puzzled. This was a cross between genuine human kindness and the Twilight Zone. Only in New York City.

AC Transit and a NYC History Lesson

Alice Wong, a Facebook friend, provided a link to a news story about a man who used a wheelchair and had difficulty getting on a city bus. To prevent the bus from leaving him behind he hopped down the curb and got in front of the bus to block it from leaving him at the stop. Here is a somewhat boring four minute video of what took place.



Based on 35 plus years of experience I am sure many buses have passed this man in recent days. Buses with working lifts and drivers who simply do not want to operate the lift are somewhat common nationwide. I have experienced this myself in many cities but this is an increasingly unusual experience. When I saw this raw video I was reminded of the bad old days. I lived in New York City when the idea of putting wheelchair lifts on buses was controversial. At the time para-transit was deemed more humane and more importantly a cheaper option. The fact para-transit system was used as a form of segregation did not resonate with the general public or the Mayors of most major cities. Today the fierce opposition to putting wheelchair lifts on buses is not well known. In NYC people simply assume all the buses have lifts. When I use the bus as I often do when I am in the city it is a non event.

In the early 1980s getting on a bus with a working lift and a bus driver who would actually stop was a rarity. I lived in NYC when the MTA begrudgingly started to install wheelchair lifts on the buses.  Former Mayor Koch was adamantly opposed. He famously said something to the effect "I will buy every wheelchair user a limo instead of putting lifts on the buses and the city will save a fortune". I will confess that initially I had no interest in participating in this battle. I was young and ambitious and had better things to do. All that changed on Park Avenue. Shortly after rush hour, I was waiting to cross the street near a bus stop and a bus whizzed past the stop. An older well dressed guy was at the bus stop that used a wheelchair and he was furious (by older I mean a man my age!). He came over to me and asked me what was wrong with me. Why was I not interested in getting the bus number down. I do not recall what I said but I was doing my best to ignore this guy and his fury. I will never forget what happened next. He called me every four letter word in the book. He characterized me as one of the "stupidest mother fuckers alive". He asked me after I get my fancy PhD from Columbia how was I going to get to work.  He gave me a piece of paper wrote the stop and bus number down along along with a phone number to call in a complaint. I tried to disengage from this conversation as quickly as possible but on my way home I realized this man was correct. The subways were a lost cause but there was no reason all new buses should not have a lift. Even as a newly minted crippled man I knew para-transit service was terrible. I also knew Denver ADAPT protests had made the national news and other cities were putting lifts on buses. New York was no different. Putting wheelchair lifts on the buses simply was the right thing to do.

I did as this man suggested. I called and complained. I started to pay attention to the buses with lifts and how many passed me (almost all). If I was at a bus stop and the bus zoomed by I wrote the number down, the time and bus stop location. MTA drivers caught on fast--this was a good way to get in trouble. Buses then started to stop. Drivers came up with a new trick: they would put the key in the wheelchair lift lock, turn the lift off and break the key in the lock. After dozens of experiences like this I was fed up and angry. Yet I was still not fully committed until I was on Amsterdam Avenue in Harlem at a bus stop on a rainy day when I heard the passengers on the bus yelling at the driver "go, go, go".  Now I was furious. That day I called the EPVA became a bus buddy. Because I had successfully gotten on a bus more than once or twice I was deemed an expert. My job was to show another person that used a wheelchair how to get on the bus. For our efforts we were cursed at and more than once I was spit at by a fellow New Yorker. This sort of blatant discrimination only reinforced my efforts. I quickly learned to do exactly what the man in the video did.  I would wait for the bus to stop and pop down the curb so the bus could not move forward. When my buddy got on the bus I would pop back up on the sidewalk. This was very effective way back when and looks like it remains effective today,

Fast forward 30 years. I am on an MTA bus minding my own business when none other than former Mayor Koch gets on the bus. I lock eyes with him and loudly ask "Hey Mayor Koch where's my fucking limo". He fires back just as loud "Fuck you! I was wrong, okay".  Those on the bus that could not help but hear our exchange had a good laugh--a rarity on an MTA bus.  Why I wonder is this history not told? Why is this not taught along side of the story of Rosa Parks refusal to sit in the back of the bus? This morning I pulled out the edited volume To Ride the Public's Buses: The Fight that Built a Movement and felt some pride. I was a very small part of historic change for the better.

Shameless Self Promotion via Jennifer Johannesen

Avid readers of this blog might recall some snowy pictures I posted on my way to Niagara Falls to meet with Jennifer Johannsen. Jennifer is going to launch a video project I am convinced will be an invaluable teaching tool. She interviewed me and I was very much in story teller mode. Today she wrote about how my words impacted her and I must say I am humbled. I find it difficult to assess when my words resonate with others. It seems I made a big impression. She wrote: My conversation with Bill has stayed with me in a way nothing else has in a long time. I am haunted by our talk, actually. I thought I had everything figured out--that I knew what the problems were. But after ruminating on Bill's words for a while, I do not feel inclined to pat myself in the back as I sometimes do. Instead, I feel deeply uncomfortable. For more see: http://johannesen.ca/2014/01/i-thought-i-knew-everything-already/

I do not want to haunt anyone's thoughts but I must confess I think it is good that Jennifer is uncomfortable. From my perspective as a person with a disability, I share Jennifer's discomfort.  I think Jennifer's discomfort is in part related to the cultural divide between people with a disability such as myself and many others and parents of children and adults with profound disabilities. Our life experience with disability is radically different. Our respective approach to life with a disability is radically different as well. I once thought I could bridge this divide and form a powerful sociopolitical force for social change. I tried and failed. Frankly, I failed in spectacular fashion and hurt some people I liked with poorly chosen words along the way. Sadly I have come to the conclusion a coalition between people with a disability and parents caring for a loved one with a disability can never be formed. I wish this were not the case but there are simply too many points of contention. For example, when I rail against the cure industry parents of children and adults with profound disabilities take me task. They slap me down hard and say with great conviction screw you I want a cure and I want it now. When I take pride in my disabled body, when I tie disability to my identity, my words fall flat. Disability is bad! There is nothing good about disability they shout. I agree. There is nothing good about being paralyzed or being unable to be autonomous. There is nothing good about seeing a beloved child or adult with a disability suffer. The anguish this causes a parent is intolerable. I will concede these parents have cornered the market on comparative suffering. I will always concede life caring for a child who will become an adult with a disability is hard in the extreme. It is needlessly hard. This is the social failure I rail against and often feel like I do so alone.

At a fundamental level I know life with disability sucks and would prefer not to be paralyzed. Obviously no parent wants their child to have a disability. No parent wants to see their child struggle. No parent wants to see their child ostracized.  No parent should ever be put in the position of having to demonstrate their child's life has value. All this is wrong, grossly wrong.  This is a given. I share their shock when scholars such as Peter Singer unfavorably compares a pig to a person with a severe cognitive disability. I find the effort of a scholar like Dominic Wilkinson to tie certain thresholds or abilities to personhood repugnant.

I have never been able to bridge the gap between myself and parents who care for a child or adult with a disability. I wonder though if Jennifer's video project can do this. She is ideally suited for the task and already knows it is unpleasant work. Perhaps being uncomfortable is a good thing.  Please read her post. It is thought provoking.

36 Years Ago Yesterday

Yesterday I had an anniversary. Thirty six years ago I remember standing for the last time. I recall my legs were quivering and I was in great pain. I recall thinking this is it. No way I am ever going to be able to do this again. In college this memory bothered me because I was struggling with my newly stigmatized identity. I did not like being the crippled guy. I hated the way people treated me. I despised the way some looked at me--the pity filled eyes made me seethe with rage. Fast forward thirty six years and I am remain a spectacle. My presence is often not wanted. Few equate disability rights with civil rights and as a result I remain angry. I am not angry about wheelchair use and paralysis; I quickly came to terms with that long ago--as in decades ago. I am angry society is changing  as a glacial pace. I am angry the physical world presents one needless obstacle after another. I shake my head in wonder. I value my life. Why cannot others see me for who I am. An ordinary man who happens to be paralyzed.

So here I sit thirty six years later and counting. Damn, how did I get so old? My students are so young I feel a fatherly urge to shepherd and guide them toward a bright future. The oddest part though is that I am aging into normalcy. My presence as a middle aged man who is paralyzed is not perceived to be jarring. Most assume I was paralyzed later in life. I am often asked "so how long after your son was born were you paralyzed?" Of course the assumption here is that paralyzed men cannot father a child. This is very wrong and my son is living proof of this fact.  I honestly do not know what to make of being middle aged and perceived as somewhat normal. I dislike being alone and loneliness in recent months has taken a very heavy toll on me. Eventually I will come to terms with this but as of today there is a huge void in my life. Sweet sorrow and salty tears flow freely. Maybe I am a human being after all.

The Screwed up World of ADA Accommodations

I am in Cortland, New York and staying at a Ramada Inn. This motel has the strangest mix of appropriate wheelchair access smashed against a gross lack of wheelchair access. I pulled in this afternoon and one entire side of the building is devoted to handicapped parking. There must be twenty plus wide spots available. This is a good sign. When I enter the building I see a nonconforming ramp--an obviously non conforming ramp as in not anywhere near code--that leads to the registration desk.  I am not a happy camper but I am relieved to learn my room does not require me to use this ramp. No big deal I tell myself, the room will be good; and the room is in fact nice. The bathroom has a good layout, grab bars in logical places. The towel rack is above the toilet near and the ceiling. No way I can reach a towel. I go to open the window and discover the room faces a game room/pool area. I can smell the chlorine through the window--a window that does not open. Given the fumes I am glad the window is bolted shut. Okay, I think I can adjust the thermostat and put the fan on. No such luck. The thermostat is placed high on a wall I cannot possibly get to.

Well, if I am going to smell chlorine all night let me at least go for a swim. The person at the registration desk assures me there is a lift--a lift that works no less.  I go to the pool area. I can see the lift. I just cannot get to it. There are two steps up to pool area. I go to the registration desk and an extended discussion takes place "Can't you walk up the steps?" Um no. No I cannot walk. More discussion takes place. If I exit the building and go to the furthest emergency exit at the rear of the building I can get to the pool area through the storage and maintenance rooms. But to do so a path would have to made. This is going to take some time I am told. I point out it is raining hard and that as I drove in I saw a pile of snow next to the emergency exit mentioned. The enthusiasm that was lukewarm to begin with has now been doused. No swimming for me. I return to my room and when I open my door I can hear kids yelling and screaming as they swim. Great. I will drown my sorrows with a beer. They have a bar--an inaccessible bar. Can I get just a beer for my room I ask. No they cannot let me leave the bar area with an open container. I point out I am not technically in the bar area. This does not sway the bar tender. Golly, is it any wonder I do not exactly feel equal to the bipedal people hordes that surround me. Really, 23 years post ADA and this is what passes for reasonable accommodations? What a joke but sadly I am not laughing.