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Monday, September 19, 2016

Inequities and Wheelchair Repair

My wheelchair frame is 30 plus years old. I have bad insurance. Bad insurance equals limited coverage. My insurance deems a wheelchair a one time life time purchase. When it comes to adaptive gear that makes my life go I am screwed. It all comes out of my pocket.  Given this, I opted out of the durable medical goods industry long ago. I read about new wheelchair designs and keep up with the industry from afar. No current wheelchairs are of interest aside from a Panthera manual wheelchair made out of carbon fiber. The decision not to buy a Panthera wheelchair is easy--it costs about the same as a new Fiat. Sorry but no. I am not going to spend a small fortune on a wheelchair that cannot be insured nor repaired without proprietary parts. 

The above leads me to question: what do you do when your customized wheelchair breaks? If you are a power chair user the answer is get ready for a tortuously long wait. A long time here can be weeks, months and in some instances years. Getting parts for any wheelchair is not easy. Finding a person competent to repair a wheelchair is an epic battle. Getting insurance to pay for the most mundane of repairs requires one to navigate byzantine bureaucracy. Every time my wheelchair breaks, a truly rare event, I consider myself lucky. I can repair or replace almost any part on my wheelchair. However, getting parts gets harder by the year. My wheelchair frame is ancient and finding parts that routinely wear out such as bearings, tires, and wheels is now a challenge. While I find newer wheelchairs of interest I always fall back on a simple reality--old technology works.  

What do you do when your wheelchair needs a repair? Be prepared to wait. If a person is reliant on Medicare the website states the following: 



If you have a chronic condition and will need DME for a long period of time, it important to learn about Medicare’s rules for replacing your equipment. Replacement means substituting one item for an identical or nearly identical item. For example, Medicare will pay for you to switch from one manual wheelchair to another, but will not pay for you to upgrade to an electric wheelchair or a motorized scooter. Medicare will pay to replace equipment that you rent or own at any time if it is lost, stolen, or damaged beyond repair in an accident or a natural disaster. Medicare should cover a new piece of equipment with proof of the damage or theft.
If your equipment is worn out, Medicare will only replace it if you have had the item in your possession for its whole lifetime. An item’s lifetime depends on the type of equipment. An item’s lifetime is never less than five years from the date that you began using the equipment in the context of DME replacement. Note that this five-year time frame differs from the three-year minimum lifetime requirement that most medical equipment and items must meet in order to fall under Medicare’s definition of DME. The item must also be so worn down from day-to-day use that it can no longer be fixed. Keep in mind that Medicare will repair worn out equipment up to the cost of replacement before the end of its lifetime. Medicare will only cover replacement equipment if your doctor writes you a new order or prescription with an explanation of the medical need. If you are affected by the competitive bidding demonstration, you must use a contract supplier to replace your equipment. If you are not affected by the competitive bidding demonstration, you can use any Medicare-approved supplier to replace your equipment. However, you will pay the least if you use suppliers who accept assignment. 
Read the above and it is very clear if your wheelchair breaks you are essentially out of luck. For a person like me if my wheelchair breaks it must be repaired immediately. If my wheelchair breaks forget going to work. Forget the bathroom. Forget cooking. Forget life. My wheelchair must be fixed when I hear the shuddering creek of metal, jarring on my front wheelchair wheel or something as ordinary as a flat tire. Again, I can replace or repair pretty much anything on my wheelchair but what if you can't? Lots of people can't. Most people can't--especially those that use power wheelchairs. Remember too that wheelchairs are highly customized. Here is the worst part: wheelchair repair shops do not exist. Imagine you are content without a care in the world and you are in your impressive and speedy power chair. What happens when it just stops working? This scenario is far worse than what I encounter and not at all uncommon. 
The above thoughts were prompted by an article in the BBC News. At the Paralympic Games there is an adaptive sport gear repair shop.  The repair center is operated by Ottobock. A German Company, Ottobock is one of the largest makers of durable medical goods in the world. Here in the USA I think of Ottobock as being a prosthetics company but they manufacture all sorts of things. In Rio, Ottobock shipped 18 tons of equipment for the games. 16,000 spare parts, 1,100 wheelchair tires and 70 prosthetic running blades. Since the Paralympic games started, 2,970 repairs have been made. Those repairs have been made with speed and precision. 
In the United Sated one of the largest companies that manufacture wheelchairs is Sunrise Medical. They make Quickie wheelchairs most commonly used by paralyzed people. They are commonly used because Sunrise Medical meets insurance industry price points. This does not mean their wheelchairs are well made or durable. Regardless, google Sunrise medical. Search "repair" on the website. The search will yield "no results". Try another large manufacturer such as Invacare. They make Top End wheelchairs and hand cycles. They also make many different power chairs. Good luck trying to locate repair services on their website. 
Replace the word wheelchair with the word car. If your car broke down how long would a repair take? Most people would be furious if a repair took more than a day. One would certainly expect to get a loaner car of comparable quality while the repair was made. This would be a seamless experience. We are talking about a lot of money. Start on the low end. Being very conservative if I had a Panthera wheelchair it would cost at least $10,000. Parts would likely need to be ordered and shipped. That could take weeks if not months. Would this be acceptable if I owned a $10,000 car? Not a chance.  A generic power chair cost at least $10,000 and can reach super car price ranges. A repair to a power chair with something more than a battery issue is going to take a while. A while here is weeks if not months. Would any reader be willing to wait months for a car company to repair a vehicle? If that was the norm the car company would be out of business in a heart beat. Yet wheelchair companies appear to be exempt from the repair business. 
How can this be? The answer is ableism is rampant. Cripples can wait. Our life sucks or so many bipeds tell me. We are poor. We are unemployed. We have no life. We are the symbolic representation of the limits of medical science. We are not thought to be "well" nor are we "sick". We are fish nor fowl. We are a curiosity. Our lives are an open book for others to question. Ableists complain that our existence is costly. One judge in Connecticut thinks severely disabled children are incapable of learning and valuable resources are being wasted on such students. The message is unrelenting--we cripples are a problem. Your wheelchair is broken? Tough luck. You can wait. Wheelchair repair shops don't exist. Of course not, there is no money to made in repairing wheelchairs. The fact that wheelchairs empower people is conveniently ignored. Our lives are devalued in every way imaginable. Being devalued is built into the fabric of society. Nothing is ordinary about our lives.

Frankly, I am angry. Just today I read the following:  Most discussions of ableism prioritize its external forms: staircases without ramps, misguided offers of help, applauding disabled people for being “so brave.” Disability itself remains something we “tolerate” or “live with” (but would, of course, “fix” if we could). That kind of ableism – that turns us against ourselves by lying about what success, politeness, health, and independence look like – isn’t broadly acknowledged as internalized oppression yet. Link: http://www.autostraddle.com/telling-myself-the-truth-5-strategies-for-fighting-internalized-ableism-350528/ The ADA is 26 years old and while the law is on my side, the ADA, one could argue it is stealth legislation. People know the ADA exists and there is the general sense the law solved problems we cripples encountered. The ADA has not solved the problem. The problem is that I and my fellow cripples are not a problem. The ADA has created a bureaucracy and there is a sense the letter of the law must be met. The result can be something like the multimillion dollar Syracuse University promenade.  Many bipedal people have repeatedly told me how great the promenade is. It has enhanced wheelchair access at Syracuse! The people that state this do not use a wheelchair. The people that I know who use a wheelchair consider the promenade to be a symbolic fuck you. Bipeds do not like this reaction. I can't blame them one bit. There is cultural divide here as broad and as expansive as the Grand Canyon. Somewhere in that expanse my voice and the voices of other cripples get lost. More than ever, the slogan nothing about us without us fits.

Thursday, September 15, 2016

Letter to Young Cripples

Use mass transportation. The fight to insure mass transportation systems were wheelchair accessible was long, arduous and heated. The opposition to putting wheelchair lifts on buses was fierce. Yet almost 30 years later I know young cripples are scarred. You were likely forced to take a short bus. That "special bus" was probably called the "retard bus" by your non crippled peers. I am sure you hated the bus. I am equally sure you were bullied. You are however the direct beneficiary of older cripples like me who forced our way into schools, onto buses, trains, and planes. In 1978 any person could object to my presence on an airplane. I was routinely denied boarding because I was a flight safety risk. Any passenger or airline personnel could object and I would be denied boarding. When lifts were first put on buses in New York City I was despised. People considered putting a wheelchair lift on buses a ridiculous waste of money. The idea the subway in every major city should be made wheelchair accessible was deemed preposterous. To this day, the New York City subway system is largely inaccessible. But the buses work well for we cripples in most cities.

I have been thinking a lot about mass transportation in recent weeks. I am an urban dweller. I use the bus system on a daily basis. Centro bus system in an impoverished city like Syracuse leaves much to be desired. The Centro bus website is abysmal. The Centro app has not been updated in years. Confusion abounds as does substandard service. This makes me sad. I am sad not for myself but the poor residents of a gritty city like Syracuse that need to get to work. Each day I am on the bus I pass building that are falling apart. I see many homeless men and women and various street people. I wonder what will they do when the weather turns cold. I am always the only wheelchair user on the bus. I don't like this. I am also struck by the fact the buses I ride are capable of holding 75 people and yet there are exactly two places to tie down a wheelchair. Clearly we cripples do not travel in groups of more than two. Were are loners, the isolated and unusual. The assumption is the presence of people using a wheelchair is a rare and exceptional event.

Get on the bus, please. On the bus are my people. Poor people. White people. Black people. Hispanic people. Many refugees. I hear different languages daily some of which I cannot identify. I see students on the bus too. I see a smattering of faculty members. I see health care workers. I see lots of manual laborers. What I do not see are my crippled brethren. Since July I have gotten on many buses. Not once have I observed another wheelchair user on the bus or waiting at a bus stop. I know my fellow cripples exist. Where are you? Where are the wheelchair users accessing mass transportation? I do not see wheelchair users on the train either. I occasionally pass a person using a wheelchair in an airport but that is a rare event. This is a big problem. The lack of representation, the lack of visibility empowers ableists to question the utility of the ramps on buses and trains. Believe me, ableists abound. They don't want us on buses, trains, and planes.

I get it the resistance. Bus drivers, train employees and especially airline personnel treat wheelchair users and a host of people with a disability as poorly as humanly possible. In the last month only one Centro bus driver has truly tied down my wheelchair in a way that I felt safe. The tie downs are applied but it is more show than anything else. If I am on a bus that is in an accident I am going to be seriously injured. I know buses are slow, run late and waiting is not pleasant. And yet I love taking the bus. I love mass transportation. I am with the huddled masses of humanity. I have not been cleved off from the heard. I am part of the society. Society can be an unpleasant place. The bus can be downright unpleasant. Last week the air conditioning on the bus I used was broken. It was well into the 90s. It was a hot stinky ride. I was happy. I was not cut off from others.

Please go out of your way and read To Ride the Buses edited by Mary Johnson and Barrett Shaw. Read the Ragged Edge edited by Barrett Shaw. It is a collection of the first 15 years of the Ragged Edge--in my estimation the most important rabble rousing collection of disability rights writing. Oh, how I miss the Ragged Edge. If you visit Denver go put some flowers on the marker dedicated to the Gang of 19 at Colfax and Broadway. Those men and women paid a heavy price to insure wheelchair users could get on the bus, go to work, shop, and be a visible part of society.

Go ahead and upset people. Don't be afraid to be confrontational. Be polite too. Do whatever works for you but be present. Assert your rights. If you don't we will all suffer. If we are not present ableists will do what ableists are good at--undermining disability rights. I know as winter sets in I am going to be in a battle with the city of Syracuse. I need to get to the bus stop. Snow removal is substandard. Curb cuts will likely be inundated with snow and ice. Bus stops will be blocked by cars and snow piles. I will be out there rain or shine. Where will my fellow cripples be? I hope to see you. I am lonely.







Sunday, September 11, 2016

Milwaukee Brace

Today at Tales From the Crip Ingrid Tischer wrote the following:

What would be a “threat of self-harm” for you, is a “personal choice” for me.

What calls for an intervention for you, calls for a pre-suicide party for me.

Your movie is It’s a Wonderful Life. My movie is It’s a Wonderful Death.



Tischer wrote these words for World Suicide Prevention Day. I urge others to follow the provided link and read her words. They are powerful. Like me, Fischer was a first. Our generation was the first that expected to live and lead an ordinary life. An ordinary life that included paralysis. While her words struck it was one image that really prompted a flood of memories. 



I wore that brace for many years. I wore it 23 hours a day. I was allowed a 15 minute daily shower and the remaining 45 minutes was spent vigorously exercising my trunk muscles. I hated that brace. It was hot. It was heavy. Despite the fact I could walk, it made me a target. I wore that brace for five years. In the summer I perspired so heavily that I would wring out my shirt. In the winter the metal would get cold and no jacket in the world could keep me warm. I suffered. The worst was monthly brace clinic. The orthopedic surgeon I saw was a cold miserable man. I hated him. He had no heart. Brace clinic was pure pressure. If my scoliosis got worse I would need immediate surgery. That fear hung over my head for years. However, thanks to brilliant parenting my mother built in a pressure relief valve. After brace clinic we would go to the Cloisters in northern Manhattan. We would get a dirty water hot dog outside the hospital and then get in the car heading north. We walked around the Cloisters looking at the tapestries and from the parking lot admire the view of Hudson River and cliffs on the New Jersey side of the river. I remember the stress. I remember the bullying. I remember teachers laughing along with other students when I would be mocked by others.  Why I am telling this story? Today I looked in the jacket pocket of an old jacket. I found a note written by mother. It was simple: "Happy Christmas! Love Mom and Dad". I burst into tears. I mourn my mother and father. As I tell others, I hit the parent lottery. Thankfully, I was with a friend who held me as I cried. 


Friday, September 9, 2016

Pity, Inspiration Porn and Assisted Suicide

Those interested in adaptive sports are having a wonderful time. The Paralympics are underway and I for one have enjoyed the hard to find media coverage. As expected, the coverage is severely limited. Mainstream media coverage of the Paralympics is routinely terrible. This year is no exception and worse than usual. In part I blame this on the following commercial.


The visuals in the commercial are powerful. Multiple athletic bodies are featured. However the idea of "super heroes" and the phrase "yes I can" have unfortunate and unintended consequences. Inspiration porn is an ongoing problem whenever the Paralympics are televised or discussed. The same can be said of adaptive sports in general. Typical people often deem Paralympians inspirational. Paralympian's as super heroes make your average crippled person look bad. The assumption is if a Paralympian can compete at such a level of excellence than other cripples are simply lazy and content to sponge off the largesse of society. You see "everyone is kind to the handicapped" and people tell me "it is good to see you out". We cripples are cleaved off from routine social interaction. We are poor. We are typically uneducated. We are largely absent from the work force. Accessible housing is grossly inadequate. Accessing health care is inherently problematic. Mass transportation is largely inaccessible. Paratransit systems nationwide offer substandard service. My crippled peers are well aware of these problems as they negatively impact us on a daily basis.

In terms of minority representation, we cripples are largely absent. In the rare event we emerge from our isolated existence, we are used to make others, typical others, feel better about themselves. At the opening ceremonies the person carrying the torch, Marcia Marsar, awkwardly fell. Like most people that fall, she got up. It was an embarrassing moment for sure. No one wants to fall while on an international stage. Instead of letting the moment pass the official Paralympic social media outlet tweeted "What defines us is how well we rise after falling". Worse, a three second clip of Malsar was titled "Never give up!"and on Facebook it was described as "a magical moment". Sam de Leve, an athlete and dancer, brilliantly deconstructed this moment. See: http://globalcomment.com/opening-ceremony-shows-that-paralympic-inspiration-porn-refuses-to-die/ If your average Olympian fell snide comments would likely be made and no one would not consider such a gaffe to be a "magical moment".  de Leve is spot on when she notes that mainstream media outlets have doubled down on inspiration porn at the Paralympics this year.

So when people say that they found Marcia Malsar inspirational, I have to wonder: what did it inspire them to do? What about the experience was so exceptional? Of course she got up after she fell—that’s what people do. It’s not brave, it’s perfectly ordinary. Real people don’t just lie there as millions watch on international television. Could you imagine yourself doing that in her situation? Really? Of all the things that make Malsar special, all the accomplishments and history that brought her to that torch, the mundane human act of getting up after a spill is least among them. She deserves more than the objectification she’s received from international journalists and social media.
Objectification: For crippled people we can never be ordinary. We are symbols used by typical others to reinforce what they think they know about disability. The fact that most typical others know virtually nothing about what it means to live life with a disability is conveniently overlooked. Typical others think our life is ever so hard. Life with a disability is indeed hard. It is hard because the social and constructed environment is hostile to our presence. This discussion makes bipeds uneasy for they would be forced to acknowledge the civil rights of people with a disability are routinely violated. Amidst the inspiration, one figure has stood out to date for all the wrong reasons. Every major news outlet is reporting about Marieke Vervoot. Vervoot is from Belgum and in the past has won gold and silver medals. She has stated she will retire after the Paralympics and is considering euthanasia. Multiple mainstream news outlets have published the following quote: Rio is my last wish. I train very hard day and night against my disease... Everyone sees me laugh with my gold medal but no one sees the dark side. I suffer greatly, sometimes sleeping only ten minutes a night and still go for gold". These words are incredibly damaging. They have been repeated again and again. They have also been uncritically accepted. The assumption is that life with a disability is filled with pain and our lives are inherently less. This message is impossible to ignore. It is an unrelenting given.

Today Liz Carr wrote "Legalizing Assisted Dying his Dangerous for Disabled People" in the UK newspaper Guardian. Her article began:

If I said I wanted to die, the press, celebrities and the public would support my choice, seeing it as rational and understandable. Hell, they would probably set up a go-fund-me campaign to help me make it happen.Yet when a healthy, non-disabled person wants to kill themself it’s seen as a tragedy, and support and prevention tools are provided. If nothing else convinces me that to legalise assisted suicide is not a safe option for many of us then this does. Suicide is not seen as socially desirable – so why is assisted suicide seen as compassionate when it’s for ill or disabled people?Marieke Vervoort, the 38-year-old Belgian Paralympian gold medallist, is only the most recent disabled person to announce that she is considering euthanasia, saying her “body is exhausted”. She is not imminently dying. Yet no one seems to be trying to persuade her that life is worthwhile. Would Usain Bolt be met with the same reaction if he announced his decision to end it all after his last Olympics?

In the Netherlands euthanasia is legal for those who are experiencing "unbearable suffering". In Canada, the most recent country to legalize assisted suicide, the law states a person can die if they have a "serious and incurable illness, disease, or disability". If I were Canadian I would qualify for assisted suicide. I have an incurable and serious disease. I have a significant disability. I am in significant pain on a regular basis. People I do not know would encourage me to die. This is not unusual. Any person with a disability that expresses a desire to die receives overwhelming support. Even children with a disability that express a desire to die get support. Jerika Bolen is the most recent such case that many people with a disability find outrageous. Back to Carr:

There is a fine line between those who are terminally ill and those who are disabled in public perception and the emotional power behind the campaign for assisted suicide is based on misplaced pity. Rather than telling us we have everything to live for – and we do – we are helped to the proverbial cliff edge and offered a push.

Reading Carr's words reminded me of one of my favorite cartoons:



Disability is part of millions of people's life. Disability is ever present. Disability will never be eradicated. I am okay with that. Indeed, there is much to gain when disability becomes part of life. Deaf people speak of deaf gain. I think we need to start thinking about disability gain. We need to do something, anything, to undermine the fact that when disability exists a worst case dooms day scenario is imagined. Doctors frequently and persistently portray a grim future for life post disability. The refrain "sorry there is nothing more that can be done" is in reality stating "sorry but your life is over". This is wildly wrong and destructive. Life with a disability is not predetermined  misery. The only misery I experience is rampant ableism. Those that imagine my life is unbearable are not clairvoyant. No one wants us to exist. I am unwanted. All cripples are unwanted. I am particularly unwanted because I refuse to be silent. I push back. I voice what others are unwilling to say. Last week I told a roomful of people at Syracuse University that the multimillion dollar promenade project was a symbolic fuck you to every person that uses a wheelchair. My words hurt good people. My words were truthful. For speaking the truth, for asserting one's rights, are the only way to change the world and make it a more inclusive place for all. This does not make me a popular man. Others like me that advocate for disability rights are equally unpopular. Based on the flow of hate mail that makes its way into my email in box I am decidedly unpopular. That's fine with me. You see I have no interest in dying. I have a passion for living.

Wednesday, September 7, 2016

Jerika Bolen: Hard Questions Being Asked

I have addressed the Jerika Bolen case more than once here at Bad Cripple. Readers will recall the case. Jerika Bolen is a 14 year old with SMA type two. She has explicitly stated she wants to die. Last month she had her "last dance" which received a great deal of press. Since her last dance, she has been completely out of the news. No follow up stories have been published in mainstream media outlets. I assume the mainstream press is waiting for Ms. Bolen to die. Her death has been scripted. This makes me shudder. The mainstream press loves this story. Plucky terminally ill child states she has had enough. She is in pain all the time. Her quality of life is unacceptable. She does not want machines to breathe for her. Oh the heart break. This rhetoric sells newspapers, generates high television ratings, and is the wildly effective click bait (paging the mighty.com).

The problem with the above story is that it makes no sense. Many people with the exact same condition as Ms. Bolen lead rich and full lives. Most live well past their teens and many live into middle age. Most do not experience the type of pain Ms. Bolen describes nor do they have over 35 surgeries as has been reported by various news outlets. SMA type two is not necessarily a fatal or terminal condition. Could Ms. Bolen truly be terminal will? Yes, this is a possibility. It is also equally likely she could live many more years if not more decades. The only person that can answer these questions are her physicians and mother. They are not speaking to the press. In this void, some people are asking the hard questions the mainstream press has not thought of much less asked. Carrie Ann Lucas, executive director of Colorado based Disabled Parents Rights, is asking child protection services to investigate. Lucas is not alone. Other organizations have asked the same question: Not Dead Yet (I am on the board of directors), NMD United, and ASAN, Autistic Self Advocacy Network. Many people with SMA type two have discretely and privately sought to contact Ms. Bolen and her family. No wants to intervene in the case as one news outlet maintained. People such as Lucas and many others with a disability are asking a basic question: why has Ms. Bolen been lauded as brave and heroic? Why did 1,000 people from all over the nation show up at the "last dance"? Why do people with a disability that express a desire to die receive overwhelming support? Why do snuff films like Me Before You reinforce the notion that death is preferable to life with a disability?   

As I see it, this was a misleading story from start to finish. No human dies in social isolation. Life and the manner in which we die has meaning. For decades, people with a disability that boldly and proudly proclaim a desire to die are lauded. The tracks to death are greased with over flowing support. At no point have I read a mainstream news article that addresses whether a 14 year old has the capacity to make life and death decisions. I have not read any story that asks why child protective services has not investigated the Bolen case. I have not read whether Ms. Bolen has received appropriate psychiatric care or even a psychiatric consultation. I have not read any story that discusses whether a minor has the legal right to die. What I do know is that if a morbidly sick non disabled child expressed a desire to die and had parental support an investigation would be launched instantly. Instead, we have a child with a disability that has expressed a desire to die and has received nothing but support from family, physicians, and the public. This troika of support might be lethal. 

Carrie Ann Lucas wrote: 

This non-terminally ill child is reportedly going to be placed into hospice sometime in August. While Ms. Bolen maintains optimal respiratory health using a bipap machine with a mask to assist breathing at night, she is able to breathe to sustain life without that device for a very long period of time daily. The only way her breathing will stop is to discontinue any form of breathing support, including her bipap, while administering a sufficient dose of morphine to suppress her breathing – in short euthanasia. If this plan goes forward, it goes beyond the allowed “double effect” of making a hospice patient comfortable even if it may also shorten life. Ms. Bolen is not terminal and being comforted through the dying process, but rather her death could only be induced with medication. Link: http://notdeadyet.org/2016/09/disability-advocates-push-for-better-healthcare-for-jerika-bolen.html

There is so much we do not know about Bolen. In the stampede of support to end Bolen's life all nuance has been lost. She is terminally ill. She is in pain. She wants to die. Life is never that simple. Death is not that simple. Diane Coleman wrote: 

as of today, we don’t know whether Jerika and her mother decided to continue with the plan to enter hospice, we don’t know whether the Wisconsin Department of Children and Families decided to intervene and secure better health care for Jerika, and we don’t know whether the hospice provider is willing to deliver enough medication over a sufficient period of time to produce total respiratory failure in a 14-year-old disabled girl who only uses non-invasive breathing support 12 hours a night and is not really terminally ill.

I think it behooves all of us to ask these questions. I think it is the obligation of those directly involved in Bolen's care to answer the very basic questions multiple disability rights organizations are asking. Bolen and her mother chose to make the case very public. They requested financial support and a great deal of money was donated to their "cause". With this publicity comes responsibility. The stakes in this case could not be any higher. We are discussing the life of a minor. Minors have rights and deserve protection. Those protections extend to minors with disabilities like Ms. Bolen. 

Friday, September 2, 2016

Inspiration is Misleading: Ask the Right Question

Recently an inspiration porn type story has made the rounds. In Florida a football program visited Montford Middle School in Tallahassee. College football in Florida is big business. Many players from division one football programs go on to become professionals. Apparently wide receiver Travis Rudolph, a Florida State Football player, went out of his way to sit with Bo Paske, a student who has autism. The story does not differ from various news reports. Rudolph was being kind in the extreme. All stories had the following photograph.



The image is striking for one reason. A student is sitting very much alone with Rudolph. No doubt the man in question was kind. I think every human that endured middle school remembers that awkward and often terrible time. Middle school can be a cruel place. I vividly recall being bullied in middle school. I was an easy target. Any kid with a disability was and remains an easy target for bullies. For years I wore a Milwaukee Brace. One steel bar was in the front and two steel bars formed the back. Kids in middle school thought it was hilarious to trip me as I neared a ramp where I would land on back and slide down the ramp. I still feel the humiliation. I also recall teachers thought this was funny as well. There were no offers of help. I was on my own. I suspect this has not changed.

Not one news story asked a basic question: why was the student sitting alone and totally isolated? Why was this student alone in a sea of students and tables? Was this by choice? Did the student want to be alone? Was he sitting alone because he was being shunned? Does he eat alone daily? Why was Rudolph praised for displaying basic human kindness? Was every student at Montford Middle School cruel to Bo Paske? Does the boy have any friends? What is it like to have autism and be in middle school? Surely cafeteria workers saw the child completely alone. Why did they not step in? This is yet another story of how the media misrepresents disability rights. No child should be forced to endure social isolation.

Wednesday, August 31, 2016

All Lives Have Value

I truly believe all human life has value. I value my life. I know others do not think the same way. I know this because strangers tell me they would rather be dead than paralyzed. Ableism, a word few people outside of the disability community can define, is woven into the fabric of American society. We people with a disability are a problem. There is a hazy idea that a law was passed a long time ago that solved the cripple problem. My friends, I assure you the ADA, Americans with Disability Act, did not solve the cripple problem. Every day I leave my apartment building I encounter an vast sea of ADA violations. The law itself is weak but the real problem remains unchanged--the ADA is not thought of as civil rights legislation. Legally my civil rights are protected and the law is enforced by the Department of Justice. This is great. Yet my existence is and has remained a problem. Everywhere I go I am a problem. Pesky bipeds have no clue. What typical others absorb about disability is inherently wrong. All the wrong lessons about disability are learned in secondary school. We have special buses. We have special education. We have resource rooms. We have IEP, Individual Education Programs. We are from birth to death deemed special. I assure you I am not a problem nor am I special. But that is exactly the way I am treated.

Being deemed special is unAmerican. We are all created equal. Among the most famous Thomas Jefferson quotes is the following. We hold these truths to be self-evident: that all men are created equal; that they are endowed by their Creator with certain unalienable rights; that among these are life, liberty, and the pursuit of happiness. The word special is absent. Worse, many assume life with a disability is less. Much less. Inherently less. This lesser life contains less value. Examples abound. In recent days I have left two tabs open on my computer. The tabs concern Bonnie Liltz. She was convicted of involuntary man slaughter. Liltz killed her daughter--her severely disabled daughter. The defense argued she should not be imprisoned. She got four years. People were outraged at the sentence. How could the judge do that! She cared for her severely handicapped daughter! She is a cancer survivor! The given is that Liltz's severely disabled daughter's life was an immense burden. Fear not, Liltz appealed the decision and she was released from prison. Link: http://abc7chicago.com/news/woman-convicted-of-killing-disabled-daughter-released-on-bond/1486384/ Liltz was released from prison because she was perceived to be a martyr. She sacrificed all to care for her daughter. Think about. How many parents kill their child and receive nothing but sympathy and understanding? Only parents that kill disabled children.

Need more evidence?

Jerkika Bolen, a 14 year old girl with SMA type II, told her mother her pain was so severe that she wanted to die. As a person with a significant disability this request was deemed logical and understandable. She was deemed terminally ill. She wanted to have a party--a final dance. In the mainstream press she was lauded as selfless and brave.

Christina Symanski was a secondary school teacher who broke her neck. She believed her life had no value. She wanted to die. She was determined to die. Die she did. She followed the advice of Compassion and Choices and legally killed herself via VSED (voluntary suspension of eating and drinking). Her family respected her desire to die.

In Japan 19 men and women with severe disabilities were murdered. It was the largest mass murder in Japan in the post World War II era. In advance of the murder spree the killer wrote "There are 800 million people world wide. Money is spent on them. It should be used for other purposes" The killer stabbed his victims to death. The victims have not be identified as in all other cases of mass murder. The victims were disrespected in  life and now death.

The Zika virus has been described as a "formidable enemy" by the New York Times. Article after article has been published about the economic burden Zika babies will create. Many articles have tried to estimate exactly how much the Zika babies will cost. The estimate is four million per baby. The message here is not subtle. Zika babies should not be born.

Most will recall who Kack Kevorkian was. Dr. Death was on the front page of every major newspaper in the nation for over a decade. He killed hundreds of people. The people he killed were mostly women with a progressive degenerative diseases who were not terminally ill.

In 1990 a Georgia court ruled that 34 year old Larry McAfee, a quadriplegic, who was not terminally ill had the right to disconnect himself from his respirator and die. Of course all quadriplegics want to die. 

In 2010 the McAfee scenario played out again. Dan Crews, a quadriplegic, feared being sent to a nursing home and expressed a desire to die.

Art Caplan, one of the most well-known bioethicists in the nation, argued an elderly man had the right to refuse treatment for a bedsore and as a result die. The man's refusal to let nurses turn him caused an uproar. Caplan deemed this a "tough case" but thought it best the man be allowed to die. He was not terminally ill. 

I shake my head in wonder on a regular basis. How can bipeds be so stupid. Are bipeds willfully ignorant? Do they fear disablement so much they stick there heads in the sand and like a child refuse to deal with the gritty reality of life with a disability. What the vast majority do not get is that life with a disability is performance art. I am always artful in the ways in which I navigate the world. I get that. There is such a thing as disability gain akin to Deaf gain. Yet disability is never framed this way. Disability is tragic. In the words of my good friend Stephen Kuusisto: 

When able bodied people don’t understand the richness and beauty of disabled lives they remain convinced disability is a calamity. Sometimes I think we should just drop the word disability and use calamity instead. Calamity Parking. Calamity seating. Calamity services. Imagine the conversations. “How did you become calamitized?” “Oh, I played with dark magic…” Or: “God grew tired of me.” Link: https://stephenkuusisto.com/2016/08/30/ubiquitous-ableism-run-amok-department/
I love this. This undermines the ubiquitous question "what happened to you". Oh how I laughed when I read these words. I think we cripples must embrace calamity. We already have a super hero figure--Calamity Jane. Well, maybe she is an anti hero. Much of what Calamity Jane said she did is open to question. However she was a regular in Buffalo Bill's Wild West Show. She was a woman that dressed in men's clothes. She was friends with Wild Bill Hickok. She was an excellent marksman. She appeared in the 1901 Pan-American Exposition. Separating fact from fiction is not easy. She was believed to have been an alcoholic, illiterate and in bad times a prostitute. She was a bad lady. Why is she famous? She was widely regarded as being a dare devil yet at the same time she routinely showed great compassion to others, especially the needy, sick and elderly. As the eldest in a large family, at the age of 14 she took responsibility for all of her younger siblings. She held a wide array of jobs--dishwasher, cook, waitress, dance hall girl, nurse and my favorite ox team driver. 



Calamity Jane is a fitting figure for disability rights. I suppose I can relate to Calamity Jane because people who read my work at Bad Cripple imagine me to be a ferocious figure. I am imagined to be a huge man, think Paul Bunyon. I have no axe but surely a guy who writes with such resolve and fury for social justice must be a big dude. Sorry, I utterly fail to live up to these expectations. I am quiet and reserved. I am certainly not an imposing figure. I am a skinny middle aged Irish Catholic with a crew cut and white beard. Yes, my pony tail is long gone. I am unstintingly polite and kind. Misinformation about my life abounds. In a classroom I am a funny and engaging professor. But I am not the confrontational figures others imagine. I do not slay bipeds at will. Indeed, bipeds do not shake in fear when they see me. Quite the contrary. I am very much human and as vulnerable as any other person with a very different body or obvious disability. I am a valued human being. In fact my life is as valuable as any other human being. Now that is a radical idea.