Saturday, October 12, 2013
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
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 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’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.