Disrespected in Life and Death

Three days ago a "wheelchair bound" man was killed near my apartment building. The "wheelchair bound man" was killed at the Plum and Erie Boulevard West intersection and dragged by a tractor trailer to his death. I knew the man by sight as I have crossed the street at the same intersection on a regular basis. Once we both commented about how dangerous the intersection was. Initial news stories did not identify the man. He was just news fodder. His name did not matter. "Wheelchair bound man" sufficed. It was not until three days after he died that his name was mentioned. The man's name was Dennis Morse. He was 63 years old. There is no mention of Mr. Morse's family. No mention of a funeral. No mention of what he did for a living. "Wheelchair bound man" sufficed.

Today a "wheelchair bound man" was killed in Detroit. He too has a name but no reporter in Detroit bothered to include it in any news story. The story is limited to "wheelchair bound man" killed in hit and run. Police are looking for information. Pedestrian vehicle crashes never end well. Pedestrians are killed by cars in large numbers. Almost 5,000 pedestrians are killed by cars yearly. Those at the highest risk are the elderly, children, and yes, the "wheelchair bound". This does not surprise me. The elderly often walk slowly and their vision and hearing can be impaired. Kids are impulsive and unpredictable. They are smaller too and harder to see. The "wheelchair bound" are lower and I can say with confidence the most dangerous part of my daily life is crossing the street or navigating parking lots. I have almost been hit more times than I want to acknowledge. I am exceedingly careful. But sometimes I have no choice. I must enter the street as curb cuts can be absent, blocked, or so steep they cannot be navigated. I know more than a few people who use a wheelchair that have been hit by a vehicle. We wheelchair users are 36% more likely to be killed by a vehicle than your average biped. Link: http://www.businessinsider.com/r-wheelchair-users-more-likely-to-die-in-car-crashes-2015-11

When a biped is killed by a vehicle the headline is very different. "Man Killed Crossing the Street". The first sentence will identify the man by name or will state something like "the police have not released the name of the victim until kin notified." The wheelchair bound remain nameless. This has always bothered me. Today it was not that hot so I walked into downtown Syracuse. I ambled to the spot where the man in Syracuse was killed. I could see the remains of wheelchair parts in the gutter. A piece of the footrest. A part of an arm rest. A bunch of bearings near a stick. No one who has not used a wheelchair for decades would recognize the remaining bits of a wheelchair. I saw the parts and was deeply sad. I wonder who Dennis Morse was. Did he have a brother or sister? Did he have a wife and children? We will never know. "Wheelchair bound man killed" seems to suffice. As I have repeatedly stated ableism kills.

Access Fail at Syracuse

On Tuesday I wanted to do something ordinary. I wanted to check my Syracuse University office mail box and treat a visiting scholar to lunch. I parked in a lot next to the building, Bowne Hall, where I work. I intended to cross campus and eat on Marshall street. I was in a good mood when I took the photo below.

Syracuse University is a gorgeous campus. Kendrick's Chapel, depicted here across the lush green grass, is one of many spectacular buildings on campus. When I took this photograph I was happy and looking forward lunch. Four hours later I had heat stroke and was within minutes of calling 911. Let me explain.

Syracuse campus is a challenge for any person that uses a wheelchair. The campus is hilly and the winters are long, cold and snowy. Summer, especially this year, can be dry and hot. Tuesday it was hot. As one that is susceptible to heat stroke I am cautious in the extreme with regard to heat. I parked as I always do in the parking lot next to Bowne Hall. I planned to go from Bowne to Marshall street, a relatively short walk. Those that use a wheelchair or ride a bike know going from Bowne to Marshall street is down hill and in good weather can be accomplished at high speed. The tricky part is getting back to Bowne Hall. There are multiple routes back to Bowne that avoid some seriously steep hills. The routes I take back to Bowne Hall are far longer but offer shade and slopes that are much less steep than a direct walk across campus. Before I arrived I knew the campus was going to be torn up as part of the Campus Framework. The controversial University Promenade project was in full swing so I knew getting around would be interesting. It was in fact my first time back to campus since classes ended the first week of May. What I encountered was far worse than expected. The artist rendering:

Essentially the large red line above cut me off from the rest of campus. I knew it would be a challenge to get back to Bowne. I did not expect the heat to be as bad as it was. I did not expect every route back to Bowne that was longer but offered substantially fewer steep hills would be closed off due to construction. To cross campus I had only one option--go up the steepest most direct route back to Bowne. It was 2pm, it was hot, and the steep route was in full sun. I knew I could not make it.  I also knew no consideration had been made as to how a person using a wheelchair could get across campus. I passed multiple ADA violations getting to my destination. Sadly, it appears that the Promenade at this stage has made navigating campus substantially more difficult for wheelchair users. I am not surprised. In the last two years the campus has become less accessible. Repeated ADA failures are the norm. Extensive delays in trying to get any reasonable accommodation for students and faculty alike have destroyed the morale of all those I interact with. If it takes me a year to get a van accessible parking spot what is happening to students seeking reasonable accommodations? The answer to that question breaks my heart. Students tell me they do not seek reasonable accommodations because the process is arduous and demeaning. Students with a disability seek me out because I am a rarity. Precious few faculty members at Syracuse and beyond have a disability. I listen to students and provide counsel but there is not much I can do aside from offer moral support. What is clear is that access and any reasonable accommodations requested are believed to be a problem. Sometimes the problem gets solved. Many times the problem does not get solved. The obvious issue here is that access is not a problem to be solved. Access is a civil right. I am weary of having my rights violated on campus and off.

I am well aware many nice people will read my words and be hurt. We are trying they say. Great I appreciate the effort but what do I do in the immediate time frame. Where do I park today? Where are the accessible bathrooms, speaking podiums, faculty housing etc. How do I get across campus while the Promenade construction is on going. The answer is I don't. I had to ask a friend to help push me across campus. By the time I got across campus with some major assistance from a friend and colleague I was very badly over heated.To make matters worse the road leading to my home was closed. In short, it took an hour to get across campus in the blazing sun and another hour to drive home. The 15 minute trek across campus and drive home took over two hours. By the time I got in my apartment I had all the symptoms of heat stroke:

105 temperature
Alteration sweating
Rapid pulse
High blood pressure
Skin flushed crimson red
Rapid heart rate
Rapid breathing
Throbbing headache

Thankfully my roommate was home, quickly assessed I needed immediate and active assistance. A bucket was filled with ice water, ice cold hand towels covered my body, and freezer packs placed on my chest. Within an hour my core temperature returned to normal. I was sore for three days. I avoided calling 911 by about ten minutes.

When I write that ableism kills, I mean it. I could have stroked out. I was lucky I did not end up in the local ER. Some really good people at Syracuse put my health at risk. Yes, a bad confluence of events beyond getting across campus were involved. All it took however was a modicum of thought. How will a person using a wheelchair get across campus? This is the rub, Getting across campus and access is framed as a problem. On a huge multimillion dollar project problems abound. However, I am not a problem but a human being.

To reiterate, I got lucky. The day after I struggled to get across campus a "wheelchair bound man" was killed by a tractor trailer near my apartment. This happens hundreds if not thousands of times a year. The human being killed is filler, a story on page A33. I know exactly where the "wheelchair bound man" was killed. I cross the street where he was killed. The carnage appears below:

When I write I feel isolation in the marrow of my bones I truly mean it. If I am rendered a "problem" on the campus where I work, I have good reasons to worry about the larger world for I know it is a far more hostile place. If you doubt this, look at the carnage above. That could just as easily been me with my wheelchair strewn across the street. As I have said many times, ableism kills. I am not a problem. I am a human being.

Letter #4 Screw July 4 and Clint Eastwood

I do not celebrate July 4th. I celebrate my independence day on July 26. On July 26th 1990 President Bush signed the Americans with Disability Act. On that day I became equal. My civil rights for the first time were protected. Disability rights are a hard sell. We people with a  disability are a distinct and disenfranchised minority group. How many typical people know the ADA is civil rights legislation on par with the Civil Rights Act of 1964? Not many. Painfully few in fact. Most people think like Clint Eastwood. They wish we people with a disability should go away. Get over it Mr. Eastwood would say.

Rail against disability based bigotry. Celebrate your independence day on July 26. You were not equal until 1990. You are the first post ADA babies to become adults. I fought hard for you. I put my body on the line. I was spit on, cursed out, and urinated on. And I was on the periphery. I was not part of ADAPT. I was not hard core. I was not getting arrested and taking over buildings. I expected, demanded, to be treated like any other biped. I forcefully rejected lower expectations. Special education did not exist. Handicapped parking did not exist. I had no rights and was often refused to board an airplane. I was a flight safety risk. There were no lifts on the buses. A person with a disability did not have the right to an education until 1975. I was 15 years old when the law passed. Think about that. I am not elderly.

You have a social disease. Robert F. Murphy taught me that disability is defined by society and given meaning by culture; hence disability was and still is a social malady. Never question this. Challenge typical others. Call them out on their deeply ingrained ableism. This is a lot to ask. I had no choice. I had to do something. You post ADA cripples have a choice. You can choose to be passive in the face of ableism. I see this often. It breaks my heart. I have been told by many students "It is too hard to get accommodations through disability services". This is not acceptable. All those ramps and lifts and curb cuts exist for one reason. We refused to take no for an answer.

Mary Johnson in her review of Million Dollar Baby wrote:

The truth is that the real problems a disabled person faces are caused by a society that refuses to see the condition of disabled people as being the result of bigotry, discrimination, and flawed social policies emanating from the belief that nothing can really be done for a disabled person if they can't be cured or made better physically. 

Accept this. Reject it and move on. You are part of a oppressed minority. This is a revolutionary perspective. It will not make you popular. It will, in fact, make you decidedly unpopular. That is something you must learn to live with.

Letter #3

Few paralyzed people write about their relationship with a wheelchair. In John Hockenberry’s memoir Moving Violations he wrote about how he felt empowered by his wheelchair on a gorgeous early morning day crossing the Brooklyn Bridge. Simi Linton in her memoir My Body Politic wrote about her cherry red power wheelchair she named Rufus. Alice Shepperd of Axis dance company contends her wheelchair is an extension of her spine. Reading such stories I feel less alone knowing others have adapted. I am just one of a cadre of individuals that have been empowered by a wheelchair. My overwhelmingly positive assessment of wheelchair use is well out of the norm.

I often refer to my wheelchair as a portable social isolation unit. Culturally a wheelchair is deeply stigmatized and a poor substitute for bipedal locomotion. A wheelchair is a thing, a product, an inanimate object. Worse yet, people associate a wheelchair with inability and physical incapacity. Symbolically a wheelchair is often associated with old age and tragedy. Think wheelchair bound, an old phrase I despise. I am no more bound to my wheelchair than a biped is bound to their feet.

I love my wheelchair--every piece of it. It is a part of me, akin to my leg or arm. I cannot envision life without it. It is a vibrant positive part of who I am. When it breaks, I am devastated--how could such an integral part of me fail. Such mechanical failures are very rare, most easily fixed. Such thoughts remind me of how I feel when I am sick. How dare my body malfunction.

My obvious and intense feelings for my wheelchair reveals a divide exists between those who use a wheelchair and those that do not. This cultural gulf makes the Grand Canyon look small. I firmly believe there is a disability culture as unique and fascinating as any other subcultural group. Not all crippled people are members--some are not happy nor do they embrace disability culture. The reasons for this are many and varied starting with the overwhelming stigma associated with disability and wheelchair use. Some of us see through this cultural bias--we understand it for what it really is--bigotry plain and simple. 

Embrace your adaptation. For me it is a wheelchair. If one is blind, love your cane or become a part of a guide dog team. If you are deaf embrace Deaf culture with a capital D. If you are neurologically diverse, celebrate your life with like mended fellows.  Reject dominate sociocultural beliefs associated with disability because they are wrong. Reject movies that praise the plucky cripple that wants to die. Don’t talk to me about Helen Keller or Franklin Roosevelt. They do not inspire me. Don’t talk to me about special education. None of us cripples are special. Reject all the misinformation about disability that people absorb unwittingly. Accept the fact you are living in a hostile world. A world where distinguished professors like Peter Singer, the most famous philosopher in the world, think all things being equal parents should be given the opportunity to end the lives of their disabled children. Others philosophers support the idea that “post birth abortion” should exist. That is should a disabled infant escape being detected in utero that upon birth parents should be given the option of terminating a disabled infants life. Those are the sort of bipeds that surround you. Never forget that fact. You live behind enemy lines.

Letter #2 to Young Cripples

You are not pathological. Your body is perfectly fine. You are different. You may not see or hear.  You may not learn the way typical others do. You may not ambulate like your average biped.  You might have your own language. You might not be verbal. Your body is perfectly. You are not pathological. This should be your mantra. It is your mantra because we humans are naturally curious.  Difference is interesting. Your body is interesting to others. Those others, ableists, who abound consider you to be public property. You do not exist to satisfy typical others curiosity. Rude and intrusive questions will be the norm. Strange social interactions are inevitable.

At the dentists office, I fill out standard forms and list medications. I transfer into the dental chair. Enter the dentist who looks over the form and asks standard questions. Because this person is smart they are also curious. I am asked How long have you been paralyzed and how did it happen”. My first thought is fuck you. I can’t say this but I can think it. I reply “How does paralysis relate my dental care?” An uncomfortable silence ensues. I have asserted my equality.

I am eating my lunch in a public place and a stranger comes over to me and starts a conversation. Within 30 seconds I am asked “So, how did you become paralyzed? I am in a cab and shortly after the vehicle starts the cabbie asks “What happened to you?” This is one of the oldest questions I am asked and is a kin to the ancient phrase “Its so good to see you out”. None of the people who ask rude and intrusive questions think they are being rude. None of them woke up thinking people with a disability are interesting and I expect them to answer any question that pops into their mind. They are ignorant. They have simply absorbed knowledge about disability that is all wrong. A few days ago a highly intelligent lawyer who teachers law told me how much she loved Me Before You and what a great job the actor did “playing paralysis. I just loved the realism”.

You have the right of privacy—the same as any biped. Your body is different. Celebrate that difference. I am injured at T-3. My lats are huge and over developed. They give me a limited amount of trunk control. I am proud of that muscle. I love my body. It has served me well. I plan to finish my life by getting wvery last ounce of energy out of my crippled body.

Whatever has been lost in terms of bodily functioning you have gained in adapting to that deficit.  Bipeds and those with typical bodies will see nothing more than a deficit. They do not see the gain. You are elite. You have survived. You have adapted. You have overcome. You have not over come a deficit. You have overcome baseless prejudice and have come out the other side a different person. You are part of an oppressed minority group. Our people represent the very best of humanity. We as a species would not exist without the ability to adapt. Others see a deficit. I see a person and reject the medicalization of the body. I see a strong tree like being that thrives when thriving appears unlikely. We are wood. Strong and hard. Don’t dare push us. We will push back with vengeance. Ed Roberts did this. I did this. Millions of other have done so. You are not alone. You are never alone. You have people. We people have power. Look at the gain and reject dominant socio cultural norms. Reject ableism. Reject a medical model of disability being imposed on you. Do not give the bipeds the satisfaction of buckling to needless pressure to conform.