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Wednesday, March 4, 2015

The Walking Dead and Assisted Suicide at Cripping the Con

My talk at Syracuse April 9, 2014. 
The most fun I ever had presenting a paper. 
Disability Cultural Center at Syracuse is outstanding. 

Thursday, February 26, 2015

Oliver Sacks and the Process of Dying at the End of Life

Oliver Sacks is dying. I am saddened and yet at the same time I am happy. A voice of reason has weighed in on the end of life. Most readers  have heard of Sacks. He is a widely respected and his books not only resonate with the public but see very well. Among the books he wrote that have I have enjoyed include a A Leg to Stand On, and Awakenings. A few days ago Sacks wrote that he was going to die in the near future. His short essay has been reproduced and shared world wide. When I read it I was deeply touched because he was not writing about his impending death but how he planned to live. He eloquently wrote the following: 

A month ago, I felt that I was in good health, even robust health. At 81, I still swim a mile a day. But my luck has run out—a few weeks ago I learned  that I have multiple metastases in the liver. Nine years ago it was discovered that I had a rare tumor of the eye, an ocular melanoma. Although the radiation and lasering to remove the tumor ultimately left me blind in that eye, only in very rare cases do such tumors metastasize. I am among the unlucky 2 percent”.

Sacks words are a counterpoint to the typical end of life story reported in the media. Praise has been heaped upon him for good reason. Sacks put neuroscience on the map for the general public. Many of the things he wrote about I witnessed. I spent a decade in and out of the hospital and I saw a myriad of devastating neurological conditions on wards of 16 morbidly sick children. The way parents and their children faced adversity and mortality is something deeply etched in my brain. After reading Sacks poignant words originally published in the New York Times I hope the mass media will engage Sacks’ approach to his death. I doubt this will happen. He is not the sort of person an organization such as Compassion and Choices embraces. There is no fever pitch emotion or tear jerking images. There is no talk of death with dignity. There is no talk about the right to die. All Sacks focused on was life. 

What I found particularly fascinating was Sacks quoting David Hume, who upon learning he was mortally ill, wrote a brief autobiography. Like Hume, Sacks has chosen to embrace life with the knowledge his life will end shortly. Sacks plans to finish more than one book manuscript and enjoy life. Sacks wrote “It is up to me now to choose how to live out the months that remain to me”.  What struck me the most in recent days was Hume’s observation that “It is difficult to be more detached from life than I am at present”. Oh my do I get this. I have lived with a similar detachment with my body and American society for nearly 40 years. Paralysis often precludes routine social interaction. While I forcefully reject the stigma and isolation associated with disability I am detached in multiple ways. If I injure my leg I do not worry about “my leg”. I worry about “the leg” as though it is an inanimate object. This sort of bodily detachment is not unusual among paralyzed people. Far more problematic is the social detachment I often feel. There are days I cannot leave my home. I cannot deal with rude people or do gooders who insist on “helping” me. I rarely permit myself to remain at home. Frankly, I will not give the bipedal bigots that surround me the satisfaction of segregating me from society. Screw them! I am a human being. I have civil rights. 

Facing ones mortality and living with a disability share one thing in common: it offers a person a unique perspective. Sacks wrote: I feel intensely alive, and I want and hope in the time that remains to deepen my friendships, to say farewell to those I love, to write more, to travel if I have the strength, to achieve new levels of understanding and insight. This will involve audacity, clarity, and plain speaking; trying to straighten my accounts with the world. But there there will be time, too, for some fun (and even silliness, as well)”.

I find Sacks words meaningful and in part undermines the highly organized effort to pass assisted suicide legislation. We are all going to die and humans will in one way or another need to process death. In so doing one must take a hard look at their mortality and life. Too many want to avoid this sort of self reflection. It is far easier to not think, rail against how unfair life can be, and become a martyr dedicated to a cause (think Brittany Maynard). Sacks is radically different for he has embraced life and the process has provided “a sudden clear focus and perspective”.  This is what those that advocate for assisted suicide legislation try to obscure and mislead in a single minded way. There is no cheating the grim reaper. There is no cutting class. There is no absenteeism.  Death will take us all and as Sacks notes the end of life is a unique experience. This sober clear headed approach to end of life does not sell well. Instead, advocates crow about autonomy, the right to die and even have a slogan: “My Life. My Choice. My death”. That is a lot of my. My my my my like a two year old with a temper tantrum.  Sacks is far too smart to buy into this sort of simplistic reductionism.  

I struggle to understand why so many are willing and eager to make assisted suicide legal. The rhetoric on the part of those that advocate for so called death with dignity laws is over the top. I for one prefer to contextualize end of life issues. Rational thought is of paramount importance. We get to die once and only once. I for one want to die well. This can be accomplished but it takes work. It requires one to talk about death and end of life issues. This is the sort of discussion few people have. I have had these sort of discussions and they are not fun. They can and often are emotionally painful. Yet I know such discussions must be had. Sacks words remind of this in a way that is enlightening. It is my hope Sacks will get the most of the last months, weeks or days of his life. What he wrote made me think how wonderful the arc of life is. We are born utterly dependent on our parents. Some people die utterly dependent upon others. The range at the end of life is as diverse as life itself. While not all states of life are remembered fondly it is my opinion the end of life is a final stage we all will experience. assisted suicide advocates fear this last stage of life. I will remain forever puzzled why such advocates want to talk about nothing more than death. Let’s talk about life and the wonders, good and bad. Lets think about lives that are worth living. So as I thought about Sacks words I had this image in my head—typical elderly white male, grey hair, suit and tie. Distinguished in a word. As I created this image I googled Sacks and images. Oh I had a great laugh at my own expense. I found the photograph of Sacks below circa 1961 riding a motorcycle. This is how I will remember Sacks. A bad ass researcher on a motorcycle. 

Tuesday, February 17, 2015

Travel: An Epilog

An epilog of sorts written a few days ago as I flew home from Chicago.

The hotel room I stayed in downtown Chicago was renovated a year ago. This is typically good news. Most but not all new hotels offer excellent access. The key word in the previous sentence is most. The hotel room I stayed at was an excellent example of good design and the obliviousness on the part of people in the travel industry who are supposed to create an ADA compliant room.

The Good.

The room was large and I could easily turn around in my wheelchair. The bed and desk were a good height. The mini fridge was easily accessible. The bathroom door was wide and had a pocket door. The room was spotlessly clean. The bed was excellent as were the linens. The television was a flat screen and quite large. The television had various ports so one could link up with a computer or gaming platform. The lighting was excellent. The closet had a low clothes rod that was easy to reach. A great feature was the lights under the bed that illuminated the floor so a person such as myself could see my feet in the darkness as I transferred. This is a great idea and seems to becoming more popular in the hotel industry.

Reality Versus Reservations. 

I requested and confirmed a room with a roll in shower and king bed. I printed out this information. Upon arrival it was clear no such room existed. All rooms with a roll in shower have two queen beds. This is a rampant problem in recent years. Virtually all hotel chains link a room with a king bed and a tub style bathroom. For me this presents a potentially tough transfer in and out of a tub. Given the fact the room requested  does not exist the manager came out to help the flustered desk clerk. The manager subsequently escorted me to the room and it was fine. I had no doubt I could handle the tub and required transfer.

The Bad.

I am glad the manager came up to the room with me. Oh, my this is ever so common. The shower head was in the highest location possible and there was no way I could lower it. The towels were also far to high to reach. The thermostat was too high to reach. The iron in the closet was too high to reach (and yes, I can iron. I do so poorly). The light switches above the bed were too high to reach. 

Some of the above sounds petty. And frankly it is. I am aware of the privilege involved. It was wonderful to have had the opportunity to stay downtown a mere three blocks from Northwestern where I spoke. What gets me is the time I consistently lose and lack of attention to detail when it comes to wheelchair access. Should not all guests feel welcomed? This is the industry standard. It is hard to enjoy travel and the check in process when small issues abound that take time to resolve. What if the manager did not escort me to the room. I would have to call down stairs and wait for an employee to lower the shower head, towels, iron, and remove a desk chair. In terms of the lights and thermostat I am just out of luck. The net result is I think no one cares. Access exists not because my existence is valued but rather it is required by law. 

Ignorance abounds.

Building on the idea that access is not valued is the ignorance about wheelchair access in the city. Bellmen at good hotels know the local area very well. I think suspect every tourist answer could be easily addressed by every person on staff. The easy answer to tourist questions is based on the assumption all humans are bipedal. If I ask about how to get an accessible cab I am given contradictory and often wrong information. If I ask about accessing busses or subway staff at virtually every hotel I have stayed in has no clue. For example, the night before I returned home desk staff  told me ordering an accessible cab was impossible. I was then assured getting an accessible cab in the morning would take no longer than 5 minutes.  As I check out I ask if the bellman could hail an accessible cab. The look of panic and confusion sweeps across the face of the desk clerk. Clearly the desk clerk doed not know what to do. I go down to the street and the bellman told me it could take an hour or more to get an accessible cab.  The bellman looked at me and asked why didn’t I call a cab company and over an accessible. Really? The minor issues I encountered could easily be resolved. Surely a large corporation could have a person on staff that could accurately answer the questions I had. All the answers I asked could likely be put on one piece of paper. The room with all the glitches could also be eliminated. I repeatedly tell hotel staff I am partially advocating for myself but far more important is the guest that follows me. The tired business man or woman that gets in late at night and simply wants to take a shower without having to call to have a shower head lowered.

The Kicker

As usual at JFK, the staff trained, and I use that word loosely, was totally unfamiliar with an aisle chair and had no clue how to to transfer me or how to use the straps that are supposed to secure me in my heat. Worse, they refused to listen to me and as a result dragged my foot on the floor. I now have a minor abrasion for a souvenir. 

Wednesday, February 11, 2015

Disability and Travel: A Time Drain

Part One

      I love to travel. I enjoy travel the most when I am accompanied by a typical bipedal person. For many who travel with me the experience is an eye opener. Frankly, I take great delight when my friends express shock when I am demeaned by TSA employees, hotel workers, airline personal and a host of others one must deal with when accessing planes, trains or a rental vehicle. Travel rarely goes as expected. The brief trip I am on now is a perfect example of the disparities for those who use a wheelchair. I tried to travel from Syracuse to Chicago but it proved to be far too costly. I decided to drive to a motel near Kennedy airport, stay one night and leave on an early morning flight. Hotels and motels near Kennedy are a mixed bag. I chose a Best Western. The price was right and it was 10 minutes from Kennedy. I had severely limited expectations. I hoped for a clean room, decent towels and a roll in shower. Upon arrival I encountered an all too typical reaction—shock. Oh my God a person using a wheelchair is checking in. I have no clue what to do. Many buttons are pressed on the key board. Confusion reigns supreme. The fact that I made the reservation online and spoke to the manager somehow has been completely lost. Ten minutes later after much consternation I am given a key. I go up to the room—a room with a roll in shower. Sorry but no. It is an accessible room-sort of. No roll in shower. No way to lower the shower head. One misplaced grab bar. I am paying well in excess of $100 and I cannot take shower? Not a chance. I go back down stairs and tell the desk person I need a room with a roll in shower. At least another ten minutes is spent tapping on the key board. The desk person then leaves and tells me he will be back. He comes back 5 minutes later and I am given a new room with a roll in shower.  

Much to my delight I meet a friend who witnessed the above. We get to the room after navigating a hall way that smelled of strong industrial cleaning products. Who knows what that smell is masking? Put that thought out of my mind. The accessible room is accessible to any slender person using a manual wheelchair. It is the smallest and narrowest room I have seen in many years. The room was massively over heated and severely cramped. My friend looked when we got to the room and said “what the fuck”. We had a good laugh. and I said welcome to land of disability. I am such a valued customer I get to spend about 30 minutes checking in and get the room I reserved on the second try. I am calm the entire time. I get it. It is just one night and what can you expect from a cheap national hotel chain. Again, my expectations were low. The room is clean and I can shower. Ah the bathroom. This is a first. There were no heating ducts in the bathroom. Now I am far from a guy that likes a bathroom or hotel room warm but this bathroom was down right frigid. Great frigid shower at 5:30AM.

The very short drive to Kennedy is a breeze. I love the Jet Blue terminal and quickly navigate to security. Only then do I realize I left my phone in the car. Ugh, proof positive it pays to arrive at the airport early if possible. I retrieve my phone from the car and return to security. For better or worse I am culled to a “special security lane” and the TSA officer tells me “wheelchair, you go to your left”. Yes, I am wheelchair man! I have no idea what to expect when I am pat down as is required. This can be lax in the extreme or akin to entering a maximum security prison. I was immediately annoyed by the TSA officer as I approached the body scanner. I was told to wait to the side and the officer in question was brusk. I am told to move to my left and go through a gate. The officer stood far too close and put his hand on my back. I hate it when people invade my personal space and never before has a TSA officer acted as this man did. I asked “please do not touch me”. I suppose he got I was annoyed and stopped me. “How do you expect me to pat you down if I am not allowed to touch me”. I instantly realized my mistake. It was foolish if not reckless to question TSA authority. The humiliation ritual must be enacted and followed without question. The fact this man was not going to be patting me down was beside the point. I went into humble, meek, and submissive mode. As it was early morning crush security took a while and my bag required extra screening. Apparently my jar of aquaphor cream caught the attention of the scanner. Aquaphor I was told is a banned substance. Another first. I have never had trouble with aquaphor. Regardless, there is unanimous agreement—I cannot board with aquaphor. Could I make a complaint? Theoretically yes. Practically no. Oh well, $20 down the drain and now I need to locate a drug store in Chicago. Aquaphor is a skin integrity must. More time will be wasted finding this cream.

So here I sit on an AirBus A 320 that was supposed to have wifi. It is not operational today as the plane is older and according to the flight attendant scheduled for multiple upgrades. So much for working on line and responding to student and professional email. Anyone that says travel is glamorous I suspect have not had much experience. Will end part one here. Part two will be how I do get into Chicago via the bus or subway.  

Part Two

I landed safe and sound at O’Hare. Getting off the plane was very slow as there were many families with young children on the plane. Cannot get upset when little kids are flying and slowing the exit flow. Mass transportation was non existent. No public busses go from the airport to downtown. No accessible Shuttle Expresses busses exist and I am asked a question I often am asked when in an airport. "Can't you walk just  little bit?". At this point I am immune and simply say no. As for the subway, the nearest accessible stop to my hotel is over a mile away. I have no idea if this information is correct. I had comparable issue with the fancy hotel I am in. I was guaranteed a roll in shower with a king bed. All rooms with a roll in shower have two queen beds and contradict what is stated on line and what I was told on the phone yesterday. This effectively makes a good sized room hard to get around. This is ever so typical. Hassles abound and slow me down. And to me that is the key to disability few get. Disability is a time sucker. First on the plane last off. Rooms description rarely reflects what is stated on reservation. Regardless I am happy to be in Chicago and looking forward to see my friend Alice Dreger whose work I deeply respect. 

Saturday, February 7, 2015

Predatory Ableism

A significant snow storm is expected Sunday afternoon running into Monday morning. Based on the weather predictions this winter, I am skeptical. Regardless, I plan to do laundry today rather than Sunday. I do not mind the laundromat largely because it is always spotlessly clean and the washers and dryers always work well. The laundromat is never dull. I have met my fair share of drunks, young and old. Many college students pass through. Lots of families too who are often worn out.  I see people doing giant piles of laundry as a way to make an extra buck or two. Unlike most days however I am dreading the laundromat. The last time I did laundry I had a typically nasty confrontation. By typical here I mean an able bodied person who insisted on helping me when no help was needed. Sometimes people who express a desire to "help" are not helpful and are only interested in demonstrating their superior social status. When I reject such help the reaction is often swift and nasty. Another from of "help" is tied to a charity model of disability. My life is tragic. My disability a terrible fate and at some level feared. I am in need of help. Note the use of the word need. I need the help of others. Easily dismissed is the fact I do not need nor do I desire any help. Such "help" is unwanted and I do my level best to avoid what I call do gooders. I have learned over the years to avoid the do gooders above all others. The "help" they insist on providing has nothing to do with me. The unwanted help that is forced upon me is about being kind to the less fortunate. I am not a human being but rather a charity case. In supposedly helping me the do gooder feels better about them self. I am in this case a prop.

I avoid do gooders and when I am confronted with such a person to gently and politely make it clear I do not want help. Regardless f how polite I am the negative reaction is swift. I had such a confrontation the last time I did laundry. I have played this over in my head many times. I continually try to rationalize the violently negative reaction on part of an utter stranger. As already noted, last weekend I was doing laundry. It was pretty quiet. A family came in with two kids and both parents. By itself this was unusual as most parents likely split chores. Two things quickly became apparent. First, the parents had no clue how to control the behavior of their kids. My expectations for a child's behavior in a laundromat is limited. Good behavior is a major plus and bad behavior in the form of wilding running around and making a disproportionate amount of noise the norm. Thankfully many kids arrive with an electronic game seemingly attached to their body and zone out. Second, and most bothersome, the kids in question behaved badly for a specific reason: they did so to get the attention of their parents. They were quick to correct and equally quickly ignored their kids.  The kids were smart and the parents not so much.

I folded my clothes as fast as humanly possible. I wanted to get out of the laundromat because I could sense trouble. I had more laundry than usual and needed to make two trips to my car that required I go directly past the family described. I could not go by fast enough. Again, I sensed trouble. As I passed the kids to the door I saw the mother rise from a chair and speed over to the door. We arrived at the door at the same time. She was in my way and I could not get by. She could not reach the door handle and my face betrayed me. I had a dead pan annoyed look on my face. In response  the woman said to me in a voice loud enough for every person in the laundromat to hear "I am a good American! I am helping you with the door but no". She then raises her voice to a near scream: "You have to be a fucking asshole don't you. You are such a bitter fucking bastard and are too good to accept my offer of help. I hope you rot in hell you prick. What is it with you people? You use a wheelchair and want to make everyone in the world just as miserable as you are. Well FUCK YOU!"

I have had many such incidents like this over the years. Rejecting unwanted help is a complex endeavor for people with a disability.  I have no idea why but all week I have been disturbed by this ugly confrontation. Initially I was disturbed because I was sure the mother was going to use this as a tool to teach her children all people that have a disability are "fucking bastards". Not exactly the way to foster progress or disability rights. What I did not realize until this morning was that all my thoughts revolved around providing the mother with a pass for her inappropriate anger if not fury. I briefly mentioned this incident to my good friend Steve Kuusisto and he replied: Some days I just hold my head. The predatory ableism we endure is relentless. That woman's desire to help was a product both of her gum chewing Christianity and her lifetime absorbing low drivel--her world view was just a bunch of strung together Super Bowl commercials". 

I love the phrase predatory ableism. It reflects my life long advise to people who know nothing about disability. I routinely tell people who express an interest in disability rights to utterly reject all they have been taught and absorbed about disability. Virtually everything they know and were taught in secondary school as well as observed in the mainstream media is wrong. I came to this conclusion shortly after I was paralyzed. I learned this in a visceral way when I lived in New York City. I have been thinking a lot about this period of my life as I have just finished a long essay for a law school review journal about parenting and how my son and the ADA have come of age. What I vividly recall is the fight to get wheelchair lifts on city buses. In the 1980s many street confrontations took place nationwide. Protests started in Denver in 1978 when a group of 60 people with a disability surrounded a brand new city bus without a wheelchair lift and refused to leave. What is striking about the Denver bus protest was the tinderbox it lit. Similar protests spread like wild fire and disability advocates responded in ways that were unheard of. We fought back. We were not silent.  When pushed we pushed back. What people realized was we were not the image they created in their mind. We were not weak. We were not stupid. It came to a shock for some but we were people--human beings with flaws and desires like the bipedal hordes that surrounded and oppressed us for decades. And what did we cripples want? We wanted to have the same rights as any other American. Among those rights were a good education, unfettered access to public transportation, and, gasp, a job and place to live.

Thanks to my good friend I am not thinking about the woman and confrontation at the laundromat. I am thinking of the day a man in very expensive business spit on me as I was getting on a bus and told me his tax payer dollars were being wasted. I think of him every time I get on a bus and no one bothers to look up from their cell phone.  I think of protesters in Dallas who threw supposedly blood stained money at the Dallas transit board of directors. I think of the protesters in Denver that surrounded the bus and put their health at risk. I think of Mary Johnson who chronicled what took place in the Ragged Edge. We crippled people may not have a Rosa Parks but we have a collective will that makes me feel a deep connection to my people. Tonight I plan on going to bed and falling asleep to the book The Ride to Public's Buses: The Fight that Built a Movement. This book should be required reading in every secondary school in the nation. Perhaps then I can give different advice to those that express an interest in disability rights. Until we equate disability rights and civil rights as being one in the same ugly confrontations such as the one I had at the laundromat will only continue.

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.