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Friday, October 18, 2013

Thinking About Assisted Suicide and What is Heard

I find the debate associated with assisted suicide frustrating. Some days I think only two views exist: those opposed or those in favor of assisted suicide. I am opposed to assisted suicide. I base my opposition to assisted suicide legislation on a detailed understanding of the issues involved. In my estimation certain populations are at risk; in particular the disabled and elderly people. I do not think all the safe guards in the world are adequate. I am not impressed by the reporting required by law in Washington and Oregon. In my opinion what is reported amounts to little more than demographic information. I do not trust lawmakers. The fact is once legalized assisted suicide advocates push to expand existing law. I find advocate groups such as Compassion and Choices slick and misleading. I could go on but the point is there are solid factual reasons to be opposed to assisted suicide legislation.

What is really needed is a national debate on end of life issues. While passion is fine we need to have a sober discussion about why people want to die. I think people with a disability are ideally suited to be prominent figures in this discussion. The reasons for this are glaringly obvious to me: it is commonplace for people with a disability to have their existence, our very humanity, questioned.  Our lives are perceived through a non disabled lens. That is we can never measure up to normal--in this context a non disabled body. This failure empowers typical people, the vast majority in the mainstream, to wonder what our lives are like. The assessment of life with a disability is not positive. In fact about once or twice a year a total stranger will without prompting tell me they would rather be dead than paralyzed. Given the lack of respect associated with disability, when we do speak out and assert our lives are indeed worth living the reaction is not positive. Hence when I read an article in the Guardian by Stella Young, "Disability A Fate Worse than Death, I was not surprised to read multiple negative comments. See: http://www.theguardian.com/commentisfree/2013/oct/18/disability-euthanasia-assisted-dying#start-of-comments
 Young wrote:


As a disabled person, I'm accustomed to conversations about quality of life and dignity. Specifically, I'm accustomed to assuring people that my life is worth living. I'm short statured, a wheelchair user, and I frequently have bone fractures. All the visual cues that make me "the other" are front and centre. People make all sorts of assumptions about the quality of my life and my levels of independence. They're almost always wrong.I've lost count of the number of times I've been told, "I just don't think I could live like you," or "I wouldn't have the courage in your situation," or, my favourite one to overhear (and I've overheard it more than once), "You'd just bloody top yourself, wouldn't you?".

Young goes on to note that the voice of people with a disability is rarely heard. In the rare instance a person such as Young is able to publish an article in a newspaper like the Guardian the response is emotional and often nasty.  The below comments are about what I would expect when a person such as Young states her opposition to assisted suicide.   


Seems like Stella believe her disability gives her some authority to advocate for others to endure pain and suffering just because she herself found it character building.


Why on earth does the writer make the assumption that doctors would automatically have control over the person? Why does she assume that rational people who decide for themselves how they want to live suddenly can no longer decide for themselves how they want to die?


I think the writer has massively misinterpreted euthanasia. It's not some dr going around saying 'your life sucks. We are going to terminate you.'


This is a very naive article that skips merrily over the pain and comfort people experience or know they will at some point in the future and look to assisted dying. 


Of course, open discussion on euthanasia is needed, and all voices must be heard but should we really give more weight to fear and paranoia than reasoned arguments?



I find it infuriating that disabled people opposed to euthanasia get to tell other disabled people how they must feel about their conditions, lives and deaths, but no one is allowed to tell them how to feel about them.


I do not consider my body and existence to be more or less valuable than any other human being. I have no desire to impose my beliefs on others. In opposing assisted suicide legislation I am asserting my right to live but I am far less concerned with my life than I am with the life of others--disabled others and all those others whose life is not valued. Young went on to note that: 

social attitudes towards disabled people come from a medical profession that takes a deficit view of disability. This is my major concern with legalising assisted death; that it will give doctors more control over our lives. As a disabled person who has had a lot to do with the medical profession, I can tell you that this is the space in which I've experienced some of the very worst disability prejudice and discrimination. Doctors might know about our biology, but it doesn't mean they know about our lives.

I would go further than Young. I think we people with a disability are feared. We are the one and only minority that can be joined via illness or accident. Our atypical bodies also symbolically represent the limits of medical science. Please do not talk to me about joint decision making strategies between physician and patients. Do not talk to me about informed consent. Do not talk to me about patient centered care. These buzz words are cultural ideals we aspire to reach. I am not suggesting we do away with these concepts. They should be valued. But my reality, my experiences when I try to access health care is radically different. Young quotes Marilyn Golden, a long time opponent of assisted suicide who perceptively observed: "we are asking the wrong questions when it comes to assisted death: We have to ask, do people with disabilities have true choice and self determination, in terms of living outside of nursing homes? In terms of housing that is truly affordable and accessible? In terms of the kind of services that really allow them to lead meaningful lives? In many cases, no."

These are the sort of questions we should be discussing. Why do people, all people, want to die? What drives a person to think death is preferable to living? Pain is not the primary variable. People choose to die because they fear losing their independence and autonomy. And here the link between end of life issues and disability is glaringly obvious to me. When I see a person with a disability I think of all the things a person can do. The same can be said for any person approaching the end of life. I think what can this person do? How can their life even with death impending be enhanced? This is not typically how others with no exposure to disability or end of life issues think. Instead we isolate the disabled and elderly--a historic pattern we have yet to break. A desire to die is a reasonable reaction to a future to spent in a nursing home. I suggest if we had community based care for elderly people life would be substantially different. Life would have value. The same can be said for those that live with a disability. Imagine if we placed value in accessible housing, transportation and lowering the unemployment rate. I bet if we did this, and I mean if we had a nationwide campaign, the lives of people with a disability would be perceived as having value.  Yes, I have a dream of a utopian society. Do not blame me. I was reading Thorstein Veblen last night who was weak on policy ideas but was a great social critic.  

Wednesday, October 16, 2013

Syracuse Redeemed!

I was getting gas yesterday in an industrial like area of Syracuse. Thanks to waze, my favorite app on my cell phone, I found the cheapest gas station in town. As I was getting out of the car I noticed a man filling up a large truck and thought thank goodness I am not paying that bill. We made eye contact and exchanged nods. As I got in my wheelchair the man said "Wow, I never saw anyone get in and out of a car with a wheelchair like your". My face turned to stone--as it usually does when such a statement is directed my way. The truck driver instantly noted the change in my facial expression and said "I am sorry I bet people comment on your wheelchair every time you get gas." I replied "pretty much". He laughed and said "people ask me how much it costs to fill the truck with gas pretty much every time". He drew out "pretty much" and then we both laughed. 313 million people live in the USA. I encountered one man who had social skills and understood the meaning of his words.  I wonder how many others get it. Perhaps one day I should start a tally.

Monday, October 14, 2013

Respect Often Absent in Hospital ER

Not Always Working is a mixed bag. Some posts are interesting but many are not. I visit the site once in a while but am not a regular reader. Here is a link: http://notalwaysworking.com/real-people-with-real-problems/31832 I found this post of interest because the exchange below likely happens in every ER in the country. Two friends go to an ER. The person that needed medical attention had Cerebral Palsy. She had an allergic reaction and was not seriously ill. Her speech could be understood. The other person was her friend who went to the ER to provide moral support.  The following conversation took place:

Nurse: “And how old is she?”

My Friend: “20.”
(Instead of responding to my friend, the nurse looks at me.)
Nurse: “Is that correct?”
Me: “I would assume. She can speak for herself. I’m only here as a friend.”
Nurse. “And for how long have you had these symptoms?”
My Friend: “I noticed them this morning, but they’ve gotten very bad.”
(Again, the nurse looks at me instead of my friend; I say nothing. She continues doing this for several moments, asking questions and then looking at me, until my friend finally snaps.)
My Friend: “You talk to me, not her! She’s my friend; she doesn’t know anything about my medical stuff.”
(The nurse stands up and storms away. I follow, more than a little angry on my friend’s behalf.)
Nurse: *to me* “You may think it’s nice to let her pretend to be a real person, but some of us are trying to run a hospital.”
Me: “Excuse me?! She’s in a wheelchair; she’s not stupid! She IS a real person.”
Nurse: “Well if you want to pretend that’s true, that’s on you.”
(I am struck completely silent in rage and shock. A doctor, who I haven’t seen until he SLAMS paperwork down on the desk, interjects.)
Doctor: “Nurse. Supervisor. Now.”

The above has happened to me countless times since I was paralyzed. Rather than assume competence health care workers in the ER assume incompetence. The only way I would go to an ER is  if I am dying--literally critically ill with death a distinct possibility. Pretty much every other paralyzed person I know feels the same way. We avoid the ER because we know our existence is not valued. We are not fully human. It is assumed we have some wort of fatal flaw. I have been disrespected by triage nurse and physicians. I have been disrespected by ancillary staff. I have been disrespected by medical technicians. Virtually every ER I have been to has been hostile to my presence. I do not take others to the ER. If I did they too would be disrespected. What exactly have health care workers done? Here are some examples.
1. My son needed stitches. His hand was wrapped in a bloody hand towel. The triage nurse asks my son who is the patient. She looks to him for the answer. Later an administrator asks me if I have legal documentation to prove I am the father. 
2. I cannot a catheter in, a potentially serious problem. I am on a stretcher legs spread and the resident starts to tell me in great detail about exactly why he would rather be dead than suffer a spinal cord injury. He was very clear a spinal cord injury was a fate worse than death. 
3. I burned my leg with hot water. It is a serious burn. The physician needs to put a dressing on. Before doing so he grills me about paralysis. The line of questioning is demeaning. I am asked how I get dressed, can I have sex, where do I live, do I have a personal care attendant, can I drive, why am I alone, etc. The line of questioning is morbid and not relevant at all. 
People wonder why accessing health care is a problem for people with a disability. I suggest a quick trip to the local ER will provide ample evidence of gross social inequities not to mention a physically inaccessible environment. 

Sunday, October 13, 2013

Idiocy Exists Even in Syracuse

I had my first negative social interaction here in Syracuse.  It pretty much ruined my Sunday routine. I leave my home early in the morning and drive to Syracuse. I get in at lunch time and my first stop is Wegmans. My brother John told me this is one of the best super market chains in the country. He is right, Wegmans is awesome. Great prices, excellent food, wonderful produce, and spotlessly clean. Believe it or not, I look forward to going to Wegmans. So there I am entering the store thinking food when a short heavy woman accosts me. "Hey, you got out of your car on the wrong side. Why are you out by yourself?" I put my head down and move as quickly as possible away from this woman. This effort fails as the store is crowded. "I am speaking to you. Where is your care taker? You cannot shop by yourself. You need to be care for and supervised". I am desperate at this point to get away. I quietly but firmly say "Please leave me alone. I use a deep tone of voice that I hope has a level of animosity.  Not a single person shopping or going by is paying attention. Shit, what can I do? If I raise my voice and say what I want I will look like a jerk. No one raises their voice when confronted with a  heavy woman about 60 years old. But from past experience I know I have two choices: a direct confrontation where I must assert authority or figure out an escape route. As these options are going through my head I realize this woman thinks I have somehow escaped or snuck out of the local group home. Yes this is far fetched. I mean how many people in a group home drive an Audi and get out of their car on the wrong side. Regardless of her background, she clearly has a very strong opinion people like me, a person that uses a wheelchair, needs a "care taker".  I figure I am screwed but am suddenly saved from having to establish my personhood: a sea of shopping carts part. I scramble through the narrowest of spaces, two mothers looks at me in mild annoyance, and I make a sharp turn into the crowded produce section. I am free. The woman cannot follow me. She is as wide as I am in my wheelchair and I am much faster.

Driving to the motel I thought what a unique life I lead. In many ways I am grateful. Living with a disability is the perfect cure for a big ego. Every time I think I am too good or too smart I have an experience such as the one I just described. Perhaps we should have Tea Party types and various elected politicians use a wheelchair. Afterall, they are playing a dangerous game of political suicide from which they are immune from harm. Perhaps having their most basic rights questioned, simply to go shopping, might put things in perspective. Hey, it works for me.

Saturday, October 12, 2013

Feminism and Disability Collide

I read the below, Feminists Are Not Responsible For Educating Men, and cannot get these words out of my mind. See http://cwinterfox.wordpress.com


As a vocal feminist with many intelligent, lovely male friends, I’m often met with indignance when I choose not to engage with them about feminism. Surely if I reallycared about changing our culture of discrimination and inequality, I should be trying to educate men? Isn’t that an activist’s job? Shouldn’t feminists be grateful when men want to bounce questions off us, because it shows that they are at least trying to understand?
It’s both exhausting and diversionary being expected to hash out the basics with men who haven’t bothered to think about their own privilege before. Men are not entitled to expect feminists to educate them. Real change will only happen when men accept that the burden of education is on them, not on women.
The post concludes:
If you are in a group that has the structural advantage of wages, safety, health and education – when you’ve basically already won the life lottery just by showing up – it is your responsibility to educate yourself. And really, don’t tell women to be nice. We’re angry. We have every reason to be. Frankly, you should be too.
There are days I am tired of doing disability based education and awareness. It is in fact exhausting at times. I have been at it for 35 years. When is the typical bipedal person going to finally get it. I am a human being that just happens to be paralyzed. The barriers that exist are socially constructed. So I like it when someone else reaffirms it is okay not be nice all the time. It is okay to be angry. And ignorance is no excuse for bigotry. Get educated people! 


Wheelchair Industry: A History Lesson and Defeating Reality


My wheelchair frame is old. I am guessing it is at least 20 years old. As of today, I have two wheelchair frames. A third frame was retired a few years ago. The frames have worked wonderfully for me. The frames have one drawback:  they are heavy. Really heavy. This was never an issue. I wanted a wheelchair that suited my lifestyle. It had to take abuse and operate flawlessly in all weather conditions. Routine problems such as flat tires had to be easy to repair. It needed parts I could find them at any hardware or bike store in the world. I regularly change the upholstery and tires. Every five years or so I have the frame powder coated.  Major problems had to be possible to resolve. For example, many years ago Northwest Airlines cracked the frame. I vigorously complained and insisted the frame be repaired. Hours later I had it welded back together in an obscure jet hanger in Detroit. While the frame was repaired I had a nice chat with a mechanic who told me the airline routinely breaks even the hardiest products in its cargo holds. 

In recent years my life style has changed. I am settling into middles age. Sigh. I do not travel as much and when I do it is from one airport hub to another. I am active but in a middle aged way. I do not take stupid risks assuming all will be well. More to the point, my wheelchair is heavy and is at this point verging on too heavy. In short, I need a I need a new wheelchair. I have been searching for a good wheelchair for the last two years. My search has reminded me why I despise wheelchair manufacturers. One can purchase a slew of inferior wheelchairs for thousands of dollars. My needs are simple: I want a wheelchair that is light and tough. I want excellent wheels and the best hubs money can buy. This presents a multitude of problems. Wheelchairs are not made to last more than a few years. The wheelchair industry is dominated by one company--Quickie. The Quickie corporate entity Sunrise Medical is the modern day equivalent of Everest & Jennings that once enjoyed a monopoly on wheelchair manufacturing. The mere mention of E&J decades after they went out of business still prompts me to utter a string of curse words. E&J was despicable company. Sunrise Medical is not much different. I see lots of Quickie wheelchairs in various states of disrepair. I am not at all impressed. They have a lego approach to wheelchair building. They use the same parts on all the wheelchairs manufactured. The designs are periodically changed but there is one constant: they are poorly designed and fall apart after a few years of use. I would rather crawl than buy a Quickie wheelchair. 

Plenty of small companies manufacture wheelchairs. They eek out an existence in the shadow of the giant Sunrise Medical. Some small companies make a profit and cater to specific clients. The current climate in the wheelchair industry reminds me of the late 1970s and early 1980s when the E&J monopoly was busted by the Department of Justice. Every paralyzed person I knew back then despised E&J. If my memory is correct my first few wheelchairs were  E&J Stainless steel sport. These wheelchairs weighed about 50 pounds and screamed danger, sick person present. Worse, these wheelchairs were designed to be used indoors by an elderly person and could not be purchased without a physician’s approval. E&J wheelchairs were substandard at best. E&J wheelchairs had not changed for decades. Wheelchairs were literally a cash cow. E&J knowingly and willfully stymied any attempt at innovation.  One could fold an E&J wheelchair but the frame was very weak. When a frame cracked, as they routinely did, E&J considered going up or down a curb and many other routine activities "abusive". I went through a lot of wheelchairs. Worse, the people that worked for E&J were condescending and rude. Thanks to the Department of Justice, social and legal advances, and decades of angry customers a revolution took place in wheelchair manufacturing. The rigid frame was invented. Power wheelchairs were also invented at this time but that is a very different story. 

Rigid frame wheelchairs originated in California. People with a SCI for the first time in history were not only surviving but thriving. The Vietnam War certainly was a major variable as was the fact spinal cord injury was the signature would of that war. A critical mass of pissed off paralyzed people had been obtained. With nowhere to turn paralyzed men and women started to experiment.  Lots of people began to make wheelchairs that were sturdy and could withstand the rigors of a typical life. People began to borrow ideas from the aviation, motor cycle, and bicycle industry. Fabricators got involved as did various industrial designers. Within a few years rigid framed wheelchairs developed a cult like following. People had heard about the rigid frames and the cool factor was off the chart. Keep in mind back then there was no such thing as the internet.  Adaptive sports consisted of wheelchair basketball. Wheelchair basketball and tennis wheelchairs did not exist. Sit skis did not exist. No one thought of making a well designed wheelchair for a specific sport or purpose. Paralysis, people assumed, precluded involvement in sports and an active life.   

Rigid frame wheelchairs were not mass produced in the late 1970s and early 1980s. They were made one by one. They were made largely by paralyzed people in their garages. Some were made by physical or recreational therapists who became friends with paralyzed people. The people that made rigid frame wheelchairs also sold and marketed their product. The market was friends and friends of friends. It was not unusual circa 1980 in California for a person to show up at the door of a person that made rigid frame wheelchairs and ask for one to be made.  Why were people so excited? Rigid frame wheelchairs do not break. Welds held up under rigorous use. A host of colors were available for the first time. Wheels and hubs were of high quality. Quick release hubs were utilized. All this is commonplace today but back in the day this blew people’s mind. It blew my mind. A wheelchair that did not break, came in any color I wanted, and could last a long time. 

Dozens of companies popped up. Bob Vogel has written about the origins of the rigid frame in California. Graham Pullin touches upon the subject in in his book Design Meets Disability. At first glance, a wheelchair appears to be simple. Four wheels and a seat. The fact is making a durable, tough, and light weight wheelchair is exceedingly complex and requires technological sophistication in multiple fields. Radical innovation is also not easy to see. Instead, radical innovation is felt by the user. Such innovation is costly and dependent upon the durable medical goods industry. Another significant variable is wheelchairs are manufactured for what health insurance companies are willing to cover. The same problem exists in adaptive sports. Hand cycles, sit skis, basketball and tennis wheelchairs are made to meet the needs of adaptive sport programs not the athletes themselves. The result is a limited number of spectacular and empowering products have recently emerged that no one can afford.  

Last summer I tried the Panthera X. The wheelchair in my estimation is the first radical leap forward in wheelchair design since 1980. The wheelchair is deceptively simple. It is an elegant design that took years and millions of dollars to create. The Panthera X is marketed as the lightest rigid frame wheelchair in the world. I took it for a quick spin around a parking lot and was flabbergasted. The wheelchair weighs 9.7 pounds and the frame is made of carbon fiber. The down side is the price. It costs in excess of $10,000. All its parts are proprietary. Thus if any part of the wheelchair breaks life will come to a sudden and dramatic halt. A person needs to shell out $10,000 and have an operational wheelchair in reserve. The Panthera X wheelchair cannot be insured. I would have serious concerns about getting on an airplane with an uninsured $10,000 wheelchair. This makes no sense. You can insure a car and a cell phone but you cannot insure a wheelchair. And more to the point, how many people can shell out this sort of money when70% of people who are disabled are unemployed. But what the heck--the cool factor is off the chart. 


Let's put this in perspective. The above massively cool life altering Panthera X wheelchair costs in excess of $10,000. The Nissan Versa 1.6 costs $9,999 brand new.


A car costs as much as a manual wheelchair? Really? Do not get me wrong. The Panthera X is an amazing wheelchair. I am sure about 1,000 people in the United States are going to be thrilled with this wheelchair. That leaves several million other paralyzed people that will move on with inferior short lived wheelchairs made by Quickie. This makes no sense. But I have a dream. In order to empower paralyzed people here is what I think should be done. If appropriate purchase a Panthera X for a paralyzed person. Give a person 6 months of intense rehabilitation. Give a person his choice of a handcycle or sit ski. Give this person two years worth of lessons at adaptive sports centers. Send this person to college or place them in a work study program. Have a job placement office at the rehabilitation center. Finally give this person a life time supply of wheelchair cushions and urological supplies. Sound expensive? You bet. And there is not a doubt in my mind this would save hundreds of millions of dollars. Imagine if it reduced the unemployment rate among people with a disability from 70% to 20% That would mean 80% of people with a disability would be working and paying tax. There would be a demand for accessible housing and transportation. The world would be a better place. Lives would be saved. And sadly I am dreaming. It ain't never gonna happen.     

Friday, October 11, 2013

The Paralyzed Bride Draws My Ire


The Huffington Post published an article about a week ago by Rachelle Friedman, “Paralyzed Bride Speaks  Out: More than Equality, We Want a Cure”. See: http://www.huffingtonpost.com/2013/10/04/racrachelle-friedmanhelle-friedman_n_4044820.html   I have never met Friedman. Based on what I have read about her life post spinal cord injury I am decidedly unimpressed. Any article I have read by Friedman or about her life has a singular focus: the drama and supposed  tragedy or her injury (she was injured at her bachelorette party and is a C-6 quadriplegic). The photographs that accompany articles by Friedman and those about her often show her in a wedding gown. This image as well as the below is designed to prompt an emotional reaction--specifically pity. The plucky and attractive woman paralyzed and confined to a wheelchair. Cue the emotional music and send in your donation to some stem cell research center. 



Friedman has appeared on the Today Show, CNN, MSNBC, VH1 and has written about her post SCI life in the Huffington Post and some other news outlets. I do not like to comment on recently paralyzed people. It often takes years to physically and mentally adjust to paralysis. Another variable is the cure industry that dominates the sort of rehabilitation a paralyzed person receives. Many rehabilitation centers focus on the hazy idea of  cure as much on the needed skills to adapt to life post SCI.  Add in most rehabilitation stays are shockingly short  thanks to the insurance industry and the majority of newly minted crippled people are set up to fail or at the very least struggle mightily. By fail I mean end up readmitted to the hospital and subsequently shut into an institution (nursing home) or inaccessible home.  The primary reason I have refrained from commenting is that whenever I take a paralyzed person to task the inevitable comments that follow will be many and nasty. I also know I will be deemed bitter and hostile. Thus for those looking for a rosy assessment of Friedman stop reading now. For those that are interested in the social significance of paralysis I think I have something to offer that is not available anywhere but within the vibrant cyber world of disability rights blogging and disability studies. The mainstream press is not ready for a man like me. 

Friedman’s articles in the Huffington Post are fluffy and devoid of substance. She consistently focuses on a cure for spinal cord injury. Paralysis is bad and an individual tragedy. This  simplistic story line makes for catchy headlines, sells  newspapers and generates good television ratings. Friedman is an archetype that warms the souls of bipedal people who know nothing about disability--aside from the fact they too could become paralyzed. I just groan when I see a person like Friedman and the many like her the media embraces.  Come on, who does not like an old fashion tear jerking story? The narrative is dependent upon a tragic and preferably young and attractive figure, male or female. In Friedman’s case she is the beautiful young woman struck down and paralyzed mere weeks before her marriage. Hand out the tissues for the tears are sure to start flowing. What gets me is this works! It has worked for decades. People lap up this narrative like nectar of the gods. 

What does Friedman have to offer the bipedal masses? Trite observations such as: “Think about what you do have and not what you don’t have. Remember what’s really important. Well, it is what it is. Realize everything is relative. Have a sense of humor”. Friedman is asked to articulate these gems for one reason: her life is a tragedy and she is an object of pity. This, as I have said, is an old story--a story I would normally be happy to ignore. But one observation by Friedman got me. I keep thinking about just how wrong it is.  What exactly did she write that has warranted a post? Friedman wrote that she wanted others to know one can be happy and competent post SCI. This is "insight" is not enough though. Adapting to life post SCI has a down side and she speculates:

“Is it possible that showing such positivity could mask our daily hardships to the point that the urgency for a cure is diminished? Don’t get me wrong, its important society knows that we are more able than most would imagine.  But it sometimes feels like it is the only message we’re getting out. What about a desire for cure?   

And here comes the kicker, this is what sent me over the edge. 

I personally want society to know that 99 percent of us don’t feel that way. That we want a cure now and we want it now.

I could humorously note I have been suddenly thrust  into the 1% Okay, that is not a constructive sentence. A cure for SCI is a laudable goal. I have stated this repeatedly. I simply have no interest in a cure. Not a single paralyzed person I know has expressed an interest in a cure. Like the vast majority of paralyzed people I am too busy trying to be ordinary. Ordinary in the sense I live a rich and full life. I work, teach, get together with friends, write about subjects I care deeply about, love my family (and my gorgeous dog Kate), enjoy fall sunsets, cook what appeals to me... None of this is impressive. In fact it is very ordinary. But I am not ordinary. I am paralyzed. I use a wheelchair and disability based social bias exists. Bigotry based on physical difference is rampant. While no person will call me a “worthless eater” as the Nazi’s did long ago that does does not mean significant barriers have been eliminated. About 70% of people with a disability are unemployed and live at or below the poverty line. This figure has not changed significantly despite the fact 40 years of progressive legislation designed to empower people with a disability has been passed into law. Most people with a disability remain socially isolated. Most struggle to access basic health care. The fundamental inequities associated with disability are simply not part of the national discussion when it comes to health care, employment, and equal housing. We are in every conceivable way disenfranchised. 

When I read any article by Friedman I shake my head. Surely I think she will get it at some point. Well, those that don't get it are embraced by the media. Those with a disability that frame their existence as a tragedy are lauded. I, on the other hand, am dismissed as a crank--a bitter man miserable about his lot in life. I find this sad and deeply problematics. I want to be an agent for social change but mainstream America is not buying what I am selling. As a result, I feel a major disconnect between Friedman's life and mine. After I was paralyzed it did not take me long to realize that disability is primarily a social disease. Robert Murphy wrote this in 1987. I was relatively new to paralysis and Murphy blew my mind. In the Body Silent he articulated what I had been feeling for almost a decade. I was the same person I was before I was paralyzed but I sure as hell was not being treated with anything close to the respect I once thoughtlessly enjoyed. So I read Friedman and I am mystified. Does she and her type, recent post SCI that cannot envision anything beyond a medical model of disability, really individualize her paralysis? Do 99% of her peers really want a cure--a cure now god damn it?  I find it impossible not to question why, to quote Friedman, “there are so many stories of wheelchair users overcoming the odds”. Exactly what is being overcome? I learned long ago the physical aspect of paralysis required out of the box thinking. With a little thought a paralyzed person can avoid the vast majority of complications associated with SCI. Evolutionary theorists call this human adaptation and we humans have been adapting for millions of years. The so called overcoming involves needless social barriers. A point missed by far too many. 

The idea that the mainstream press focuses almost exclusively on how people overcome their disability is laughable. Such stories are indeed repeatedly trotted out in newspapers and television programs. They are all the same. Disability is a tragedy that can be overcome through hard work and effort.  This is exactly what people want to read. These stories require no thought and in fact make typical (non disabled people) feel good about their life. The thinking is as follows: in 500 words or in a three minute video clip one concludes disability is bad, I am glad I have not acquired a disability, and that single individual overcame a disability. Some may speculate if one person can overcome his or her disability so should every other person. Those that do not overcome disability are failures or simply lazy. This line of thinking is utterly devoid of substance and undermines the premise of the ADA--the gross and commonplace civil rights violations. 

There is a single point of agreement I share with Friedman. She thinks that when it comes to disability the general public is clueless. This is undoubtedly correct. But Friedman fails to ask the all important question why. Why does the general public fail to understand the “hardships” associated with disability? People see a paralyzed person and think the inability to walk is terrible. The inability to walk is the least important issue a paralyzed person must deal with. The basic physical problem is the refusal to negotiate difference and the way we paralyzed people navigate the world. People revere steps and bemoan the inclusion of ramps as ugly or worse yet the cost associated with wheelchair access in the form of elevators and wheelchair lifts. A waste of limited resources for a few individuals--I would be a wealthy man if I had a dime for every time I heard someone say this. Almost 25 years after the ADA was passed into law barriers to inclusion still exist--both physical and social. Yes, progress has been made but that change has been done begrudgingly and is not valued. Many bitterly complain the ADA is “an unfunded federal mandate”.  This statement reveals just how ignorant people are. The ADA is first and foremost civil rights legislation. It is an “onerous burden” and “unfunded mandate” because no value is placed on the inclusion of people with a disability. This is a human rights violation that gets no press. 

I am not the only person that has taken Friedman to task. Emily Ladau at Words I Wheel By wrote  “Why Curing Disability Should Not Outweigh Equality”. See:  http://emilyladau.wordpress.com/2013/10/07/curing-disability-should-not-outweigh-equality/ I urge people to go to this blog post and read not only this entry but the long comment thread. Another blog worth reading is That Crazy Cripple Chick. Please read "Screw A Cure, I want Equality: A Letter to Rachelle Friedman". See: http://thatcrazycrippledchick.blogspot.com/2013/10/screw-cure-i-want-equality-letter-to.html Frankly, I think these posts are too kind. I think Friedman needs to do a lot more thinking and reading. At the top of her list should be the extensive literature in disability rights.