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Friday, July 8, 2016

Story Telling

Like most anthropologists, I love to tell stories. We anthropologists tend to be very good story tellers. When we do ethnographic research we listen carefully. We also participate in every day life of those we study. We encourage our informants and "our people" to tell stories. We then use those stories to write about cultures different than our own. Often those cultures live in remote regions of the world. My mentor at Columbia University, Robert F. Murphy, studied the Tuareg and Munduracu. He was among the best story tellers I ever had the pleasure of listening to. Murphy could make you laugh, cry and think all at the same time. He was nothing short of brilliant. He was far from alone. Many anthropologists are truly engaging people. Most anthropologists are gifted speakers and lecturers. Exceptions exist of course. I have sat through some pretty boring and dry lectures delivered by well known anthropologists who I shall not name.

The point here is I tell lots of stories. I am an entertaining speaker which is not easy to do when I often write about end of life and assisted suicide legislation. In part I am a good story teller because I have led a very different life. Growing up I went through the medical mill. I was not expected to survive, few of us did in the era before advanced medical imaging. When I was a kid if a physician wanted to know what was going on inside the body one got a spinal tap or had surgery. I had a lot of spinal taps. I had a lot of surgery. I suffered. I endured. To cope, I became a wise ass and made a concerted effort to be subversive. As the youngest in my family, I became a skilled instigator. I put on a facade of innocence but I was a devilish kid. I had the inate ability to rile people up and appear ever so innocent. What I did not like was mind numbing routine. Hospitals, like any institution, are utterly dependent on routine. As a kid I knew exactly what time it was because hospital routine never changed. I was desperate to escape the inertia of ward life. One way I maintained my sanity was to undermine or disrupt ordinary medical examinations. There was a down side to my quiet rebellion and penchant to undermine authority. A while ago I told a story to my good friend Diane Wiener. She was quite bemused. After I told my story she asked me to retell the story on my blog. I promised to do so. I will now follow through on this promise.

This is a very old story that I have told it many times. The year was 1977. In the state of New York and many others teens can get a drivers license at age 16. I waited until I was 17 years old to express any interest in driving. I asked my mother to take me to the dreaded motor vehicle office. I had studied the DMV book and scheduled a written drivers test. I passed the test and was good to go or so I thought. The only thing left to do was demonstrate I had typical vision. A very bored woman asked me to read the fourth line on the chart. I said what line. My mother looked at me with daggers in her eye. DMV is not the place to joke around. She knew me too well. In the past I had thoroughly enjoyed undermining residents who admitted me to the hospital. When it got to a question about my hearing I replied "What?" multiple times. Some residents did not get the joke while others simply rolled their eyes and pressed on. No one was ever truly amused except myself. Keenly aware and afraid of my mother I stated all I could see was a fuzzy E. I was not joking. I was profoundly near sighted. I had spent years in and out of various neurological wards. I was so sick no one ever bothered to check my vision. This is not a complaint. Physicians were far too busy trying to keep me alive.

The lack of vision testing is clear evidence I took nonconformity a bit too far. It was also proof positive I missed most of my formal secondary education. Regardless, when I went to school with my driving glasses I was astounded. I could see the classroom board. The board was a real thing not some abstract idea teachers talked about. In geometry class I saw lines for the first time. In math class for the first time I could see the problems written on the board. In science class I could see the periodic table. I did not have to memorize the periodic table! I  missed so much school I simply assumed I had to memorize what the teacher said. I knew the board was on wall at the front of a classroom but I could not see what was written on it. I vividly recall thinking my God school just became very easy. On the rare occasion I was well enough to attend school I subsequently spent all my time letting my imagination wander. With a board I could see I no longer needed to pay attention to what the teacher was saying.

I have worn glasses every day since 1977. My near sighted vision became worse each and every year. I have relied on an increasingly strong prescription since I was a teenager. Each time I get a  new prescription I chuckle and tell my story. Every time I meet a teen about to apply for their license I tell this story. It is a good story. It is a story that reminds me that sometimes being ordinary, following protocol and routine is not such a bad thing. This is a lesson my son has struggled to learn. I guess the apple does not fall far from the tree.

Wednesday, July 6, 2016

Gang of 19

I have been thinking a lot about the Gang of 19. I am not referring to a prison gang or some bad ass biker gang. I am referring to a small group of people with a disability who were angry that they were dependent upon substandard paratransit in downtown Denver. The year was 1978 but the long simmering anger began in 1973. People familiar with disability rights know the story all too well and the central figures involved. It all started with 60 people. 60 angry people. 60 angry crippled people. And then 19 angry crippled people who on July 5 put their bodies on the line. Every time I get on a bus I think of the Gang of 19. Every time I go up a ramp or lift on a mass transit bus I give a silent nod of my head in respect. I can get on the bus because 19 people and their allies fought hard to insure buses across the nation had wheelchair lifts and ramps. The Gang of 19 was the epicenter of the move to make the buses wheelchair accessible. It all started at 10am at the corner of Colfax and Broadway. A small monument is at the corner with the names of the individuals involved. When in Denver I place flowers at the monument.

The story of the Gang of 19 is well known and is best detailed in To Ride the Public's Buses: The Fight that Built a Movement edited by Mary Johnson and Barrett Shaw. I remember reading about the Gang of 19 in the newspapers. I was a freshly minted cripple--I was paralyzed only a few months before when I started reading about the protest in Denver. I didn't know what to think. I was busy and  frankly did not pay too much attention. I was working hard to get through the day. I was focused on my ADLs--activities of daily living. How do I get my pants on; how do I transfer from wheelchair to car, couch, toilet, floor etc. How do I drive? How would I figure out getting around the campus of the university I was going to attend? I was about to launch my life as an adult. I was clueless about the ramifications of disability but I was learning fast. The learning curve was steep. Much of my focus was on getting stronger. I had not been medically stable for a decade. I was rail thin--I barely topped 100 pounds. Every day was a grind. Doing the ordinary was physically exhausting.

I did not know it at the time but I was about to get a crash course on disability based bigotry in NYC. After I got my BA I moved to the city. I became an EPVA bus buddy. In NYC then Mayor Koch was adamantly opposed to wheelchair lifts on the buses as were most people at the time. Like Denver, we wheelchair users forced ourselves onto the bus. The two men using wheelchairs above, one of whom is holding the bumper of the bus, were practicing a classic technique. Either one or two people using wheelchairs got in front of the bus at the same time another person also using a wheelchair got behind the bus. Effectively trapped, the bus driver had to either deploy the lift or accept the bus would not be moving any time soon. This did not endear us to irate bus passengers. I know this history well. I lived it. I was cursed out. I was spit on. I put my body on the line. I was a very minor player in a much larger civil rights movement.  I knew whose side I was one. I became enthralled with all things disability rights based. I knew in the marrow of my bones it was the right thing. I knew it was in my best interest in the present and future. Without access to mass transportation how was I going to get to work when I earned my PhD.

Fast forward to today. I have been reading about a new problem on public buses. In cities across the United States, Canada, and England mothers with strollers large and small are taking over the so called handicapped seating area. What astounds me is if a person using a wheelchair uses the lift and tries to use the designated area to sit those responsible for the infant in the stroller refuse to move. In short, people using a wheelchair are left out on the curb and have no choice but to wait for the next bus. I find this astounding. Mothers in particular were our allies circa 1978. They wanted lifts on the buses too. They supported me and countless others for not just for lifts on buses but curb cuts. While common place in every city and town, curb cuts were as popular as wheelchair lifts. They were often deemed an eye sore and safety hazard. The opposition did not last long--especially in the garment district of NYC. Add in the support of countless bikers and messengers on bikes and every city and town in America began to install curb cuts. In fact they are so common I am told learning how to pop a curb while using a wheelchair is no longer taught to newly paralyzed people when they receive rehabilitation.

I am of two minds when it comes to the culture clash between typical people responsible for an infant in a stroller parked in the handicapped seating area on the bus. First, it is now so common for a person using a wheelchair to get on a bus no one really pays attention. This is amazing. It is a concrete example of the great progress disability rights activists have made. My existence on the bus is not worthy of attention. Of course, once in a while you get a cranky biped who will say something nasty but that is outside the norm. Second, what is wrong with people? Are people responsible for the care of an infant in a stroller on a bus really that oblivious or privileged? The space on a bus for a wheelchair user is severely limited. Options are limited to say the least. Typically there is all of one or two spots to sit. The battle between wheelchair users and stroller users has reached England's Supreme Court. I suspect the same legal battle will be fought in the Canadian court system. I assume the United States will not be far behind. At issue is who has the right to the handicapped space on the bus. Is the person responsible for the stroller required to evacuate the handicapped space?  Does a person using a wheelchair have a right to the designated handicapped space?

I have no ready answer for the above questions. I have used many buses in cities coast to coast but have never gotten on a bus and had the handicapped space fully occupied by strollers. I have come across many a biker or older person with a large cart occupying the handicapped space. Some people are polite about moving while some are decidedly nasty. I am not sure why I have not encountered the wheelchair user versus stroller user yet but many others have. The social dynamic here is fascinating. Who holds more social capital? Who will get the social support from fellow bus riders? The CBC published a story about this dilemma in Winnipeg. Link:

While I do not have any ready solutions, I do lay the blame on secondary schools. Every school teaches children about the Civil Rights Movement. Every child knows who Martin Luther King is. I suspect every school kid knows who Rosa Parks is as well. I cannot say the same about the members of the Gang of 19. I am willing to bet virtually no school children know a thing about the fight to make buses accessible nationwide. I am equally sure children learn nothing about the disability rights movement. When my son was a boy the ADA was mentioned in passing at best. I doubt much has changed. If people absorb anything about disability during their secondary education it is most likely that the segregation of people with a disability is the norm. We have special buses for those students with a disability. That special bus is routinely a short bus. Using the short bus carries great stigma. Derogatory terms abound about the short bus. It is often dubbed "the retard bus". Countless people with a disability have been deeply scared by being forced to use the short bus. The message sent is clear and distinct: segregation is fine. Special education students use the special bus. They are a class apart. This logic carries into adulthood. I can only speculate that those who refuse to move a stroller from a handicapped area on a bus do so because they have absorbed this inherently destructive lesson. In the wildly entertaining and insightful book The Short Bus by Jonathan Mooney he wrote that the short bus:

serves a social function. Our myth of who we are, who we shall be, is actually created by categorizing people people with disabilities. Disability is inherently a negation. In our culture, people with disabilities stand more for what they are not than what they are--not normal, not whole--a negation that calls into being its opposite: the normal. The normal looms over all out lives, an impossible goal that we are told is possible if: if we sit still, if we buy certain consumer goods, if we exercise, if we fix our teeth, if we... The short bus policies that terrain; it patrols a fabricated social boundary demarcating what is healthy and sick, acceptable and broken, enforcing normalcy in all of us. 

The infant in the stroller is our future. The infant in the stroller is normalcy. The infant in the stroller is a valued member of society.  The infant is a future person who will be a producer of labor. In contrast, the person using a wheelchair is the symbolic representation of the limits of medical science. We cannot cure all afflictions both large and small. We are the personification of tragedy and how fate can deliver crippling blows (pun intended). Wheelchairs by themselves are stigmatizing. The key word here is negation. Bipeds only consider what a person using a wheelchair cannot do. They see a lesser human being. A lesser human being that cannot walk. We wheelchair users have an entirely different perception of a wheelchair. We love our wheelchairs. We know a wheelchair is empowering. It makes life go.

To borrow a line from the film Finding Dory "Suck it bipeds". For those who are on a bus with a stroller get out of the way. Get out of the way of every person using a wheelchair. I fought long and hard to get on that bus. I may have been a bit player in comparison to the Gang of 19 but I was in the game. I fought as hard as I could. So please just move. Take your privilege, social status and stroller and move it. Use a wee bit of common sense. Might you be inconvenienced? Yup, there is no denying that. And, had secondary schools done a better job teaching children about the disability rights movement, we would not have such a needless issue. It took decades for the bus system to be made accessible. People were arrested and laws were changed. A stealth civil rights movement took place. What we need is some serious educational reform. We can start by eliminating all so called special education buses. We can also teach children about the Gang of 19. The names of those who sacrificed so much should be as well known as Rosa Parks.