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Friday, March 16, 2018

Gang of 19 Plaque Change

In the Wade and Molly Blank papers are a number of boxes with great photographs. I love photographs of the disability rights movement. Obviously it is fun to look at how fashions and hair styles have changed over time but what really sticks out is the evolution of the wheelchair. I shake my head in wonder when I see old fashioned E&J folding wheelchairs and the very first power wheelchairs. Each and every time I see old photographs I am delighted by the technology incorporated into manual and power wheelchairs that empower people with a disability. But I digress here. 

I was surprised and disappointed to learn the original plaque dedicated on July 26, 1992 was replaced in 2005 to commemorate the 15th Anniversary of the ADA. I went by the plaque this morning and it is looking well worn. The plaque is dirty and slightly chipped in one corner. The surrounding area where the plaque is located is dominated by groups of homeless men. It is not a place to lounge around and I doubt the flower I placed on the plaque will last long. 

The Gang of 19 chose where to protest and surround a bus wisely. The intersection of Broadway and Colfax is a major hub.  If you shut down this intersection as they did the streets branching off will become grid locked. I can readily imagine absolute bedlam in terms of traffic jams. The Gang of 19 were smart and veteran civil disobedience protesters. 

The current 2005 plaque:

The Original plaque in the Wade and Molly Blank papers:

I object to the change from the 1992 to 2005 plaque. The RTD, like every other major mass transit bus system in the United States fought tooth and nail against making the buses accessible to wheelchair users. I was a small part of this fight in New York City. I use the word fight for good reason--it was a bare knuckles brawl. I have read through the RTD correspondence with Wade Blank and the Atlantis Community and it reveals the RTD did its level best best to prevent lifts from being put on buses. The Governor of Colorado, a Democrat Richard Lamm, sided with those opposed to placing lifts on buses nationally. At the 1983 APTA conference held in Denver he explicitly rejected the effort to make all buses accessible to wheelchair users. In his address to convention goers he stated he was a "friend" of the Atlantis Community but could not in good faith advocate for making all buses accessible. When he stated this the crowd gave him a standing ovation. His remarks started with a long description of how America's industrial might had eroded badly in the post World War II era. He likened America to a sick person that was in desperate need of help. Here I quote directly from his speech:

The point is that we cannot make America economically healthy without offending someone. Our combined inability to say no to a variety of well meaning but inefficient programs is an economic sickness that is striking at our very ability to survive. 
Can we afford to spend 8 billion dollars to put a lift on every bus in America when St. Louis, for instance, reports $600 per person per ride and Philadelphia $300 per person per ride? When the Congressional Budget Office estimates that by vans we can serve 3.5 times as many people for one-sixth the cost?
It’s not a question of transportation. We should provide transportation  for the handicapped. But just as handicapped citizens have a right to be transported, so we have a right, no, a duty, to make sure that transportation is provided in an efficient manner. History will judge us harshly—as trustees of America’s limited resources—unless we make both compassionate and efficient decisions. 
America is a Gulliver bound by a thousand threads of special interest Lilliputians. We cannot rise until we throw off those threads. 
America will not make its economic comeback without each of a wide variety of special interests to contribute. Adversity, thus—those whole last 10 or 15 years of adversity—should be our teacher, not our undertaker. 
We won’t win unless we offend everyone a little: Unless we tell the handicapped we sympathize and we will provide the most cost efficient transportation, but not the most expensive. 

I found Lamm's words shocking even in retrospect. Lamm went on to argue for the expansion of "special transportation" or para transit. This is the same man who in 1984 drew wide spread antagonism when he stated that the elderly, terminally ill, and disabled have "a duty to die and get out of the way so that our kids can build a reasonable life". He was no friend of Atlantis Community or people with a disability. He was an ableist bigot. 

I have no idea why the original plaque was replaced. However, I object to the deletion of the Gang 19 members being listed on the 2005 plaque. I object to the deletion of the line "We Will Ride" that was repeatedly chanted from July 1978 and through the early 1980s. I suspect Wade Blank would agree with me. He did not put his body on the line--the Gang of 19 did. They were the people threatened with arrest. To be blunt, the 2005 plaque is a historical white wash. The Gang of 19 is not mentioned. The Atlantis Community is not mentioned. The RTD is made to sound too good. They did indeed vote to become accessible but only did so because of highly effective legal, social, and civil disobedience actions. There is a large measure of irony here. The RTD that vigorously opposed placing wheelchair lifts on buses is now proud to be among the first major cities in the United States to be 100% accessible. When I get on the bus I do not think of the RTD but rather an anonymous group of people who have been ignored by historians--and that includes those who work within disability studies and disability history. I for one remain forever grateful to the Gang of 19.

Tuesday, March 13, 2018

A Little Dose of Ableism Courtesy of an RTD Train Driver

Since moving to the Denver area, I have relied entirely on mass transit. Mass transit is always interesting and the people watching is amazing. On any given day I can be exposed to exceptionally well dressed people, the poorest of the poor, homeless parents with wide eyed children, the elderly, mentally ill and the crippled like me. I have found the light rail system (RTD) easy to navigate and the vast majority of train drivers to be excellent. The RTD bus drivers in contrast are a mixed bag. Most are unpleasant or unhappy to all. I get it. Being a bus driver is not an easy job. RTD buses are grimy and based one my experience homeless people use the bus on cold days (I presume to stay warm). Bus drivers also hate to tie down wheelchairs and are clear when I get on: "You don't need to be tied down, right?" Let me translate this statement. I am not getting out of my seat to tie down your wheelchair. Fine, I am well aware should the bus be in an accident I will become a human projectile.

I find the bus versus drive train driver dichotomy interesting. Last night I had my first interaction with a  train driver that was unpleasant. Unpleasant here is misleading. My short exchange at the end of my ride was an example of ableism and ignorance. When you get on an RTD light rail train the RTD driver lowers a ramp and asks where are you getting off. Deploying the ramp is easy and takes seconds. Train drivers are invariably polite and easy going. I have never had an RTD train driver be rude to me or complain about deploying the ramp. Train drivers as a group are a pleasure to deal with. Disability is never a factor. I am just another guy getting on and off the train. Riding the train is about as ordinary as ordinary can be. For this reason alone, riding the train is an absolute pleasure.

Last night I had the following experience. I got on the train with a friend at Union Station. I told the driver my destination. As is the norm, the driver writes down my destination on a little board below the windshield. No driver has ever forgotten my stop. Last night was about as routine as humanly possible until I got off. At my stop the train driver got out of the front cab as the door opened and went to deploy the ramp. The driver looked at me and asked "Where is your care taker?" I replied as pleasantly as possible "My friend got off to pick up their car". Not impressed the driver replied "You should not be out by yourself. You need a caretaker". The driver proceeded to shake her head and glare at me in clear disapproval--like a nun who was putting the class clown in place with an icy stare.

As I walked home I wondered how do people learn about disability. Whenever I am alone people will ask about my caretaker. This happens at airports, bus terminals, and car rental hubs on a regular basis. Often airline personnel appear shocked I am traveling by myself. When I am questioned about the location of my care taker my heart sinks. I never get angry when confronted with such an ignorant comment.  I never reply with a cutting comment. Instead, this level of ignorance makes me sad and weary. Nearly 30 years after the ADA was enacted the level of ignorance associated with disability remains high. The ADA is rarely thought to be civil rights legislation. The ADA is routinely disparaged in the news and popular media.  When some asks me "where is your care taker" I am repeatedly reminded disability rights is in its infancy. We as a nation have a very long way to go before people with a disability are treated as sentient human beings. The train driver's comment was a buzz kill. I went to a fun event at Union Station last night and had not one but two Old Fashioned drinks. On the train, my guard was down and after I was asked about where my care taker was I felt like a boxer that just got hit with a wicked and unexpected upper cut. Then again maybe the train driver has been reading the user manuals for my Apex wheelchair.

Thursday, March 8, 2018

The Legend of Larry Ruiz

"My mind is completely intact".

These are the words of Larry Ruiz. He was interviewed via email by Fred Pelka and his words appear in Pelka's book What Have We Done. In my estimation Pelka's book is the richest and most detailed discussion of the ADA. It is not a book for the light hearted. This is a 622 page tomb for those intimately familiar with the creation and passage of the ADA. In Pelka's chapter about ADAPT he provides a few biographical portraits of key figures such as Ruiz,  Mark Johnson, Barbara Toomer, Babs Johnson, and Michael Auberger.

Ruiz spent his entire childhood in institutions. In 1972 at the age of 18 he was sent to the infamous Heritage House in Lakewood, CO. Almost all the young residents of Heritage House grew up in institutions. In fact, Ruiz spent almost half his life in institutions. Conditions in Heritage House were substandard.  Heritage House was far from unusual--conditions in such institutions for the handicapped were more often than not substandard (the most notorious being Willow Brook Institution). Ruiz recalled:

I lived there [Heritage House] on a huge wing with other children and adults for three years. Most of the people in the youth wing also grew up in institutions, and we did not realize that we were living in substandard conditions. We were treated poorly, and all our state benefits went straight to the nursing home. We were given an allowance of twenty-five dollars per month.
We had an activities director for youth named Wade Blank. He helped us form a residents council. Wade discovered that there were a lot things we could do for entertainment. We saw shows such as Elvis, the Who and the Grateful Dead. Our eyes were opened to the outside world., and we began to grow restless. Wade had the vision of us being able to live on our own. He helped us realize this possibility. 

Ruiz escaped Heritage House and lived independently for over 35 years. He was a founding member of ADAPT, an organizer of Atlantis, member of the Gang of 19, and was arrested over 60 times at various actions. In the Denver Post obituary for Ruiz, Barry Rosenberg stated "Larry was a real icon, and I think he holds the world record for being arrested for his advocacy efforts on behalf of other people with disabilities". In the same obituary Julie Farrar stated that Ruiz fundamentally changed the way she perceived disability. She noted "the amazing thing about Larry is that he was always optimistic. There were times when I saw him struggle, but he didn't have a sense of resentment. He put all his energy into change, into achieving a higher social justice for everyone. It is amazing someone with his past, all those years in an institution, could use that for good".

I find it hard to imagine what Ruiz endured. He spent a lifetime telling others his mind was "completely intact". No doubt the assaults on his concept of self were relentless throughout his life. Escaping from a nursing home is a major accomplishment by itself but his contributions did not end there. Like many people with a disability who put their bodies on the line, civil disobedience is not only effective but creates an amazing sense of empowerment. This I get. Michael Auberger, co-founder of ADAPT along with Wade Blank and others, recalled APTA protests in Washington DC circa 1984.

One of the most empowering things that happened was to convince somebody that they could stop a bus. Here's a sixty-ton bus that all of a sudden doesn't move because somebody's sitting in front of it, somebody's sitting behind it so it couldn't back up. (That was another of the things we learned early on, that you can't just block the front of the bus, because they will back up). You can't talk about putting lifts on buses, and all the other things that came out of what we did, but I think the most amazing thing was the empowerment and self-esteem that people ended up taking home with them. To watch someone who had been institutionalized, is now out in the community but still struggling to survive, and accepting the handouts, to see somebody in that situation sitting in front of a bus and telling a police officer "No, I'm not moving. You had to tell people "Don't smile when you're saying these things, this is a serious issue", but all of a sudden you've got somebody who's feeling their oats, who's feeling like, "Wow, I just told a cop 'no, I'm not going to', and the bus is not moving, and it's not going anywhere because I can't ride it". As far as I am concerned that had more value than all the other things that we did and accomplished. People went from feeling powerless to being truly empowered. And those people were the people that went back home, talked about what they did, and organized around the issue, that felt like now they were somebody. You know, Jessie Jackson is always repeating the "I am somebody" chant. Well, it's one thing to say it, but it's a whole 'nother thing to feel it, and actually do it.

I love this quote and photograph above. Pictured are four people with a disability laying on the ground in sleeping bags in front of a Denver bus. Barricades and an empty wheelchair are in the background. I vividly recall that rush of empowerment long ago in Harlem as a graduate student at Columbia University when I stopped an MTA bus from moving along with a buddy. That is what people with a disability felt nationwide in the early 1980s when the fight to access mass transportation, especially buses, was dirty, nasty, and prolonged. I am sure that is the rush ADAPT members felt this past summer when they were arrested in the Capital building and elsewhere protesting health care cuts proposed by the GOP. This is why people with a  disability fight hard and do not compromise--think bare knuckles dirty. You see society does not expect us to get arrested, block buses, and chain ourselves to the entrance of buildings. There is the notion one should be kind to the handicapped. Well, if I have learned anything in my life it is that kindness kills. I don't want kindness, I want equality. That is what all people with a disability desire. Larry Ruiz knew this better than most. And yet this icon is largely unknown. Countless people who put their body on the line are equally unknown. This is unfathomable to me. It is also why I am forever proud I can seamlessly ride the bus in the city I now call home.

Wednesday, March 7, 2018

Gang of 19

A week ago I started delving into the papers of Wade and Molly Blank housed at Denver public library. The papers are extensive, well preserved, and professionally organized (a rarity when it comes to disability history). I have long been fascinated with the Gang of 19. These men and women started a national movement. I never met a member of the Gang of 19. I never met Wade Blank or his wife. I deeply regret this. I was revolving in a different circle back then when ADAPT was being formed and Blank was helping young people with a disability escape nursing homes. I was paralyzed in 1978 and miserable when the Gang of 19 formed. I was angry like the Gang of 19. I hated how people treated me. In response, when I arrived at college I drank too much and smoked way too much pot. I had spent a decade in and out of various neurological wards and found myself paralyzed and medically stable for the first time in a decade. I was going to have fun and make up for all the time I lost in hospitals. In the haze of alcohol and pot I simmered and seethed. I knew at a guttural level the way I was treated was fundamentally wrong.  I wanted to embrace my people. I had no idea how to do this. I tried sports. I joined the wheelchair basketball team the Flying Dutchmen. I was a terrible basketball player. I had no idea how to play. It did not help that I weighed in at a whopping 100 pounds and was skinny as a rail. I had fun on the team but sports was not the way I wanted to connect with others. I needed a productive outlet and somehow became an EPVA bus buddy in NYC. It was on the streets of New York that I was able to vent my anger.

The first time i saw this plaque I laughed. The RTD fought tooth and nail against lifts on buses. This did not make the RTD unique. Every major bus line and mass transit system has viscously opposed wheelchair access. The fight to make mass transit accessible was nasty, mean spirited and in some cases violent. Acts of civil disobedience started in Denver and spread nationwide. Going through the Wade and Molly Blank papers I found clippings from newspapers across the nation. Wheelchair users chained their bodies and wheelchairs to bus fenders. Some got out of their wheelchairs and lay their bodies in front of inaccessible buses. I was a small part of this effort. I was an EPVA bus buddy. Because I was able to get on an MTA bus with a lift just once I was deemed an expert. I was tagged with teaching other people who used a wheelchair how to get on an accessible bus of which there were very few. My fellow New Yorkers were not impressed. They were in fact openly hostile. I was spit on. I was pissed on. I was screamed at. Bus drivers cursed me out. Entire buses full of people booed me and others who had the nerve to try and do the ordinary--get on a bus. We wheelchair users quickly developed a two person buddy system in NYC.  We would hide behind a car or bus stop. When the bus came to a halt one of us would pop off the curb and hold onto the front bumper. The other person would ask for the ramp to be deployed. If the driver started to back up the other wheelchair user would rush to the rear, pop off the curb and we effectively trapped the bus. As the months passed drivers adapted as did we. Some drivers would break the ramp in front of and give us the finger. Other drivers would not pull near the bus stop or curb. Most drivers would blow by us and not stop.

No single person became well-known for their effort to get on the bus. We cripples have no Rosa Parks. Our effort to access mass transit is largely unknown. Disability rights is not taught in secondary schools. Disability rights is not taught at most universities. The disability rights movement is a stealth human rights effort. Worse, the ADA is under attack and aside from we people with a  disability no one seems to care. Like many, I am deeply embarrassed by our current president and the GOP. There are days when I find myself filled with despair. Why does the GOP cater to the ignorant and those filled with hate? Nearly 60% of Americans believe our current president is a racist. Tens of millions of people are uninsured and our health care system is grossly dysfunctional. Falling down the rabbit hole of depression seems an inevitable and reasonable response. Yet I have resisted this impulse with remarkable success.

A few weeks ago I went to a public screening of a PBS documentary about the Gang of 19 at Atlantis. Atlantis is the second oldest Independent Living Center in the United States. For those unfamiliar with Independent Living, check out the Atlantis website. Link: To say I was energized the night I saw the documentary Colorado Experience: The Gang of 19--the ADA Movement would be an understatement. I got to meet John Holland who was featured in the film and is a brilliant lawyer who takes on small entities like the federal government! Meeting him and others that night was a thrill. I found my people. I also found a project. The Gang of 19 has not earned its rightful place in disability history. Without the Gang of 19, I would not be able to get on any mass transit bus in this nation. In delving into the archive it was readily apparent they inspired a nationwide movement of ordinary citizens who had enough. We people with a disability pay taxes and had the right to board the bus. We had a right to access mass transit. Without that right employment, housing, and education were not possible. I was like millions of other people with a disability who expected to live a long life--a typical life. That life included the simple ability to get on a bus. In the 1970s this was radical thinking.

When I was done working in the Denver Public Library last week I walked to Colfax and Broadway where the above plaque is located. It was not the first time i have visited this spot. Each time I look at the plaque I bring a disposable rag. I wipe the bird shit of the plaque. Sometimes I leave flowers at the base of the plaque. The men and women who formed the Gang of 19 paid a heavy price for their activism. To the best of my knowledge, 18 of the 19 members of the Gang of 19 have died--people like Larry Ruiz who was among those that escaped the infamous Heritage House at the age of 21 with the help of Wade Blank. This man should be a legend. I think of him regularly because on occasion I see a young non verbal quad getting on the RTD light rail. I suspect this person is a student at the University of Denver. What is striking to me is how ordinary it is for this person to get on the train. She has an iPad and types out her destination. The first time I saw this person I thought how awkward it would be for her to do the ordinary. And then the ordinary happened. The train driver did not bat an eye. He simply looked at her iPad and stated her destination. The person nodded and off we went. I immediately thought of Atlantis. Named after the lost community of Atlantis, I felt at home perhaps for the first time in my life. Don't get me wrong. Denver has its share of problems like any other city. Access fails abound. Indeed, a few days after I went to Atlantis I was invited to out for drinks at the View House--a local bar near my home. There was not a single table in the restaurant that was accessible and at no point did the host acknowledge my existence. I walked out in anger.

Life with a disability is wildly unpredictable. Within the span of a few days or even minutes one can be treated equally or horribly. I am forever grateful I fell into the field of anthropology when I was an undergraduate seeking a philosophy of life that would empower me to fight against ever present ableism. What I take great solace in is that I am just one of many people with a disability who refuse to buckle to lower expectations and outright bigotry that is socially sanctioned. I am part of the resistance--albeit a small part of a much larger wheel. The Gang of 19 was the wheel hub from which spokes of protests and civil disobedience spread. To know I played my part brings me more satisfaction than anything else I have done in my life.

Below is the documentary. It is well worth an hour of your time.

Thursday, March 1, 2018

EZ Breezy Discussion of Assisted Suicide

It is hard to make jokes about assisted suicide. There is really little humor to be found in trying to joke about assisting someone to die. More generally, end of life is not discussed--much to our detriment. I understand why we do not talk about end of life. Death is final and scary. No one wants to die and the subject matter is easily avoided. If you doubt me, I suggest you try and engage in a serious discussion about end of life. The discussion is likely to be short and one runs the risk of being deemed morbid. The reality is end of life is likely one of the most important subjects one should discuss. Living wills, power of attorney, health care proxy, etc. should all be signed and placed in an obvious easy to find location should one become critically ill. Beyond these nuts and bolts one should talk about end of life with loved ones on a regulate basis. One's views on end of life change. End of life should never be a one off discussion. Instead, end of life should be an on going discussion. I do not mean to be a ghoul. Believe me, I get that end of life is terrible. My parents are deceased as are too many of my siblings. Those that cared of me as a morbidly sick child and the reason I am alive today are now all deceased. I owe these people a debt I can never repay and know that every day is valuable.

Death has been a constant companion in my life. As a morbidly sick kid most of my peers in various neurological wards did not survive. Thanks to phenomenal advances in pediatric neurology over the last 40 years my experience is firmly part of medical history. Most children with the sort of devastating neurological conditions I witnessed now survive. Neurological wards of 16 sick children are a thing of the past. Limited visiting hours for parents and loved ones are also history. Hospitals are far more humane and civilized institutions. This sort of change is revolutionary. Yet revolutionary change has not taken place with end of life issues. We Americans routinely die poorly. 60% of Americans die in the hospital. 20% die in nursing homes. Only 20% of Americans die at home--the stated preference of most people. The difference between preference and reality is stark. In this void it has become accepted that the preferred manner of death is controlled. By control, I mean we control the circumstances under which we die--the ideal being assisted suicide. The notion we have a right to die has become an accepted belief. I shake my head in wonder at the idea. Death is a biological inevitability not a right. The reality is for most close family will be making the final hard decisions at the end of life. Given this, we owe it to ourselves and loved ones to have hard and on going discussions about end of life.

I don't like talking about end of life but have done so with my son since he was a child. He knows what my wishes are and how they have evolved. I have come close to death more than once in my lifetime. This has given me a unique perspective as has my disability. For better or worse, many people think death is preferable to life with a disability. This sentiment has been expressed in a myriad of ways by physicians and strangers alike. I get it loud and clear. My life has less value in the eyes of many. Ableism abounds. And like end of life, it is far easier not to acknowledge ableism is built into the fabric of society. When it comes to disability, platitudes abound as do simple stories of overcoming.

Growing up, my son would tell me that if I laughed my face would crack and fall apart. There is a grain of truth here--I tend to be serious to a fault. Yet sometimes you need to blow off some steam. Last summer I had the opportunity to meet the famed Tipsy Tullivan. If you have not seen her brilliant videos on You Tube I urge you to watch each and everyone of them. According to You Tube Tipsy Tullivan is:

Tipsy Tullivan is a writer from Asswallascallacauga, Alabama. She has thrice been nominated for a Pushcart Prize and has published very many books. Her favorite writer of all time is Gary Hannah. When she's not writing, she enjoys dirty martinis, spontaneous travel and hanging out with her best friend Shady Sullivan. Tipsy presents advice she's learned from decades of attending The Association of Writers and Writing Programs Conference, The Smoky Mountain Writers Conference, and Many Retreats Across the Vast Nation.

Tipsy and I had a chance to talk about assisted suicide. We had fun. We shared some laughs. Our time together reminded me just how much I value life. It made me wonder why are so many in a rush to die? Why are people eager to control the circumstances of their death? Why are doctors willing to help people die? Why are people pushing assisted suicide legislation? I want to live as long as humanly possible. I am not foolish. I get some diseases are terminal. I understand medical futility. What I don't get is why people don't want to get the absolute most out of the limited time we have. I want to use every last ounce of energy in my body. I want to slip to death knowing I went as far as I could. As a contrarian, I suppose I am a Dylan Thomas kind of person. The Welsh poet is famous for his poetry and his singularly famous line "Do not go gentle into that good night". To me, Thomas was writing about life in this poem. It was not death but rather life and the tenacity of the human spirit. Spirit I have. Tenacity I have. This makes me quite ordinary.  Scores of people are drawn to Thomas words because they are redemptive. The poem itself was written at the height of Thomas popularity and near the end of his life--an end of life that was messy and influenced by a haze of alcohol. For more about Thomas and his famous poem I suggest one read Paul Muldoon's introduction to the 2010 The Collected Poems of Dylan Thomas. I do not own many books of poetry but this is one volume I continually fall back upon when troubled.

I have thought much about Dylan Thomas since Tipsy Tullivan posted the humorous video of us discussing assisted suicide. Life is full of laughs and tears, serious fun and great heart ache. The two videos below clearly demonstrate the range of human experience and remind me what a gift life is. First Tipsy and then Thomas.

Saturday, February 10, 2018

Using a New Wheelchair is a Long Learning Process

I expected my old wheelchair destroyed by United airlines to last the rest of my life. Forced to adapt to a new wheelchair since mid December only now am I beginning to feel comfortable and secure. Initially, I was worried about falling and in pain by the end of the day. Finding the correct seating position was and remains a challenge. My old chair was very long--elongated was the fashion long ago. Long ago, the idea was to prevent muscle contracture by having a long down slope angle at the front to of the wheelchair. My rear wheels on the old wheelchair were wider and the front wheels were large by modern day standards (rear 24 1 3/4 and front were 8 1/2). All wheels were pneumatic. This gave me a soft ride and with my weight spread out I could navigate any terrain and up to a foot in snow. This was important to me in large part because my son was an outdoorsy kid and we spent a lot of time camping and kayaking. The back of my old wheelchair did not fold down and the frame could not be adjusted in any way. It was an elegant simple design and was rugged in the extreme.

My new wheelchair is sleek and uses the latest technology and materials available--most notably a carbon fiber frame. It is amazingly light yet feels a rigid as my old wheelchair. Modern day wheelchair manufacturing is all about component pieces that allow a great deal of adjustability. Wheelchair manufacturers claim they offer the best of two worlds. Great flexibility and rigid frame experience. I think this is a load of crap. Contemporary wheelchairs are adjustable because the professionals charged with selecting the right fit and size often make mistakes. Wheelchair sitting clinics have incredibly long waiting lists and providing a properly fitting wheelchair is far more complex than one would think. Indeed, it is a rarity when I see a manual wheelchair user sitting properly in a correctly fitted wheelchair. It does not help that many people buy wheelchairs online from discount houses such as Bike-on. I am not opposed to buying a wheelchair this way. One can save a fortune if they know exactly what they need.

Seating specialists are a mixed bag--some are great at their jobs while others are not competent. The range in quality even within a single company can be significant. I was fortunate in that I dealt with a competent seating specialist. Many are not so lucky and far too many people end up getting a wheelchair that is less than ideal and ill fitting. An ill fitting wheelchair is at best useless and at worst a significant danger to one's life and well being. Getting the perfect wheelchair fit is a risky and expensive proposition. Far too many people end up with a pink elephant--a wheelchair they cannot use and cannot be returned. The resale value is low. In short, you better get it right the first time or thousands of dollars will have been wasted.

I selected an Apex carbon fiber frame rigid wheelchair. I chose this over the TiLite line of wheelchairs. Based on my observations, the TiLite line of wheelchairs is the go to product line for most men who are paralyzed. These wheelchairs did not appeal. While the design was acceptable the TiLite wheelchairs are not built to last. Under rigorous use an aluminum frame TiLite can be expected to last two to five years (a titanium frame will last longer but significantly raise the price and would not be covered by most health insurance companies). The TiLite wheelchairs feels cheap to me. So why does the TiLite line of wheelchairs abound? They meet insurance industry price points. The other wheelchair I considered was the Panthera X. It is by far the lightest wheelchair manufactured in the world (it weighs under 5 pounds). It is also the most expensive manual wheelchair made. It is a gorgeous wheelchair. It also has Panthera branding all over the shiny carbon frame. Panthera has virtually no presence in North America. It is an exotic wheelchair for the 1%. It took me about two minutes to dismiss the Panthera. Despite its light weight and glossy carbon fiber frame with Panthera written all over it the wheelchair is wildly impractical. The Panthera will be the first wheelchair stolen (and yes wheelchairs are stolen all the time). Forget about getting spare parts. Forget about working on the wheelchair in the event a part fails--it has a host of proprietary parts. I could never permit such a wheelchair in the cargo hold of an airplane. Do I really want to put a $10,000+ impossible to insure wheelchair in the belly of a plane knowing that airlines break thousands of wheelchairs a year? Not a chance.

I went with the Apex wheelchair made by Motion Composites despite the fact I am wary of this company. They are based in Quebec and are the fastest growing wheelchair company in North America. I was concerned such explosive growth could lead to quality control problems. The Apex wheelchair frame weighs 9.2 pounds. It has integrated impact guards, front bumpers, and a rigidizing system that makes the wheelchair feel rock sold. Like other wheelchairs, it is fully modular and adjustable. The back angle, seat to floor height, upholstery, and more can be adjusted. In addition, it has laser etched markings that allow one to adjust key components so that they are level without measuring. It even has dual bubble levels in the front wheel housing to insure the ideal adjustment.  Each screw and allen wrench is printed with its size making it user friendly. Essentially, each chair given its adjustability, is a one off custom fit for the individual user.

Here are some photographs of the Apex from images available on line. Below the entire wheelchair. Note the amount of branding is not over the top. In the center back bar is the word Apex. Built in the upholstery is the Motion Composites logo, a feather in a circle at the top of the upholstery.

Below is the bubble level in front wheel assembly and laser etched markings at rear axle. 

Below illustrates how the seat to floor height can be changed as well as rear wheel position ability to mover forwards or backwards. One's weight should be directly on the rear axle. 

Below is the folding back mechanism. This feature is critically important and will be subjected to the most intense pressure from daily use. 

There are a few things I do not like about the wheelchair. The back creaks and does not feel as rigid as I had hoped. However, the benefits of the folding back are significant. The frame takes up little space in a car. The backbar above with the word Apex on it makes the frame easy to lift. The other thing I dislike are the push rims. The carbon fiber frame does not get cold nor does the upholstery. Only the push aluminum spinergy push rim gets cold. I went to downtown Denver yesterday and in my 20 minute wait for the train the rims got quite cold. The major draw back to date is transferring from the wheelchair into a car is awkward. I am sure over time I will be accustom to the transfer. I also do not like how the back upright adjusts (it can go from 15 to 18 inches). To move the back upright requires an odd tool that reminds me of Ikea furniture. 

I have no idea why this special tool about 10 inches long is required. I do know adjusting the back uprights is awkward. To me, this is a design error. Regardless, I am quite please with the fit and feel of the wheelchair. I get a sense the founders of Motion Composites saw a market niche for affordable adjustable light weight wheelchairs. Motion Composites released their first wheelchair in 2008 and as such are new to the wheelchair industry. The growth rate of Motion Composites is remarkable. Between 2008 and 2013 sales grew 2241% I hope the founders are making a healthy profit. The better they do the more secure I will feel. There is nothing worse than the feeling I had when United Airlines broke my wheelchair and I knew the frame could never be replaced. This brings up my overwhelming concern. When carbon fiber fails it is usually a catastrophic failure. Catastrophic failure and wheelchairs are words that should ever be in the same sentence. If this wheelchair fails my life comes to an immediate and sudden stop. I try to ignore this harsh reality. In the meantime, I have a serious case of new wheelchair enthusiasm. I clean my wheelchair every day. I mourn the few nicks on the wheelchair rims and front forks. 

Sunday, February 4, 2018

Absolute No According to the Wheelchair Manual

My new Apex wheelchair came with a tool kit. Motion Composites is not screwing around (pun intended). The little kit is not only useful but of surprisingly good quality. Any basic repair can easily be performed and more than a few major components can be worked on as well. The tool kit even has a belt loop holder. The kit is absolutely perfect for traveling whether by plane, train or car. I was also pleased to learn that Motion Composites will continue to provide any part for a period of ten years. It is my hope this wheelchair will last me the rest of my life.

Note I did not include bus travel above. Motion Composites states the wheelchair cannot be used on any paratransit or mass transit bus. The inclusion of the kit is ironic because the warranty in the owners manual is clear the wheelchair can only be adjusted by the manufacturer or a "qualified service agent". I am not sure why the tool kit was included. The warranty outlines the "repair procedure". According to the manufacturer the "parts that could be repaired by the owner: Rear tire and inner tube".  That is it. That is the only part of the wheelchair I as an owner can work on. I am more than a bit puzzled. Motion Composites was all too willing to sell me a tool kit to work on the wheelchair but the manual that came with the wheelchair prohibits me from making any adjustments. The glossy brochure that came with he wheelchair even advertises and praises how adjustable the wheelchair is.

If anything noted in the section on "Adjusts to your Life" is done by the expert rider or owner the warranty is void. Only the manufacturer or a certified service center can adjust the wheelchair. Any part that can be removed must be returned to the manufacturer. Thus any service or repair to the wheels, arm rest, upholstery, and cushion must be performed by Motion Composites. A certified technician employed by an authorized service center can work on "broken bearings, loose spokes, wheel not aligned, loose bolts, abnormal vibrations, noise or any deviation in the frame, front stem is not perpendicular to floor, broken parts like anti tippers, back canes, rips or tear on upholstery and for yearly inspection" I am confused. This list includes removable parts such as wheels and beloved anti tippers.

Other emphatic no's include disposing of the wheelchair. Yes, I am not permitted to throw out the wheelchair. "In case of disposal, return device to your dealer or rehabilitation center".  Wow, the medical model of disability reigns supreme. The manual warns me that motor vehicles and all busses represent significant risk. The wheelchair is "NOT" designed to be used in any motor vehicle. The wheelchairs manufactured "DO NOT meet Federal Highway standards for motor vehicle seating". As always, the exclamation point inside a triangle proclaims:

NEVER transport your chair in the front seat of a vehicle. Movements of the vehicle may cause the chair to shift and interfere with he driver's ability to control the vehicle. When transporting your chair in a moving vehicle, ALWAYS secure your chair so that it cannot roll or shift. In most cases, stowing it in the trunk is the safest alternative.

Another warning relate to the optional push handles. "The stroller-handle is not designed to lift or pull the weight of the user. It is designed to push and guide the wheelchair user". Stroller handle! Am I an infant or an adult?

Sporting activities are prohibited. The wheelchair is not designed to be used in any sporting activity. Weight training and stretching are not permitted as well. I am cautioned to never stand on the wheelchair or any part of the frame. I must be sober at all times. Yes, no drinking is allowed.

DO NOT use while under the influence of alcohol or medication or drugs. This may impair your ability to operate the wheelchair. Please consult your physician regarding the use of your medication. The wheelchair is not intended for visually impaired people. 

The wheelchair manual informs me that the wheelchair is not designed to be used in extreme temperatures. Hypothermia and severe burns can occur if the wheelchair is exposed to extremes of heat and cold. Under the section CAUTION I am informed Do not expose product to any extreme temperatures (e.g. direct sunlight, sauna, extreme cold) in order to prevent injuries by contact with some parts of the wheelchair". I never knew direct sunlight was so dangerous. It also looks like skiing or going outside in the winter is out of the question. And no summer activities. I can only assume temperature in the 90s are extreme. This says nothing about the dangers of humidity

I have thoroughly enjoyed deconstructing the wheelchair manual. I was also prompted to read other manuals,. The manual that came with my hand cycle contains no such ridiculous warnings. The manual is simply of little use and the warnings are relatively limited. I read multiple typical bike manuals as well. They contain few ridiculous warnings. For me, the larger issue is the wheelchair manual assumes a complete lack of independence on the part of the person using the wheelchair. How does a company that manufactures a wheelchair designed to make a person independent write such a a manual? Concern for liability only goes so far. As I read the wheelchair manual I thought of the newly paralyzed person or therapist charged with teaching such a person how to adapt to paralysis. What sort of life long skills are being taught? While curb cuts abound, they are not at every street corner. Popping up and down a curb is an essential skill. The fact is wheelchair should be designed to meet the most extreme environmental conditions one is typically exposed to. The refusal of wheelchair manufacturers to acknowledge this reality adversely affects people with a disability. This is a significant problem that compromises the daily life of people with a disability. Many power chair users have written to me expressing frustration over controllers that are not waterproof. I can find waterproof cameras, phones, computers, tablets in any given electronics store. Wheelchair manufacturers surely can make a power chair controller that is water tight. As for my wheelchair to expect it to be removed from the bathroom while showering is just silly. Yet beyond the silliness are ever present assumptions about the quality of life. We people reliant on wheelchairs have no life beyond an institution or home. Hence, strangers often comment to me "It is so good to see you out". The wheelchair manual is the 24 page equivalent of this comment.  

In the spirit of fairness, in the days ahead I will outline why I chose this wheelchair over others manufactured. I am truly pleased with the new wheelchair. It is incredibly light and easy to push. I am eager to zoom through an airport and suspect I could go a mile in under five minutes if the concourse is relatively empty. I have a serious case of new wheelchair enthusiasm. I clean the wheelchair daily and it remains as shiny today as the day I picked it up.

Saturday, February 3, 2018

Ramps and Ascending or Descending Curbs and a Single Step According to the Wheelchair Manual

Ascending or descending a curb or single step is a risky proposition according to the wheelchair manual. The manual contains many bold exclamation points in a triangle next to each paragraph and drawing of ascending or descending a step or curb. Repeated warnings caution the wheelchair user to never attempt to ascend or descend a step. NEVER. Read carefully. This ascending and descending a single step or curb is a seven step process.

1. NEVER attempt to negotiate a curb or single step without assistance. 
2. Instruct your assistant to stand at the rear of your wheelchair, with the front of the wheelchair facing the obstacle.
3. NEVER attempt to negotiate any such obstacle backward. 
4. Instruct your assistant to tilt the chair up on the rear wheels so that the front casters clear the curb or step. 
5. Instruct your assistant to slowly move the chair forward and to gently lower the casters to the upper level as soon as you are sure that they are beyond the edge of the curb or step. 
6. Instruct your assistant to continue to roll the chair forward until the rear wheels contact the face of the curb or step. 
7. Instruct your assistant to lift and roll the rear wheels up too the upper level. 

Wow, there is a whole lot of instructing going on. What the above instructions do not take into account is the need to remove or rotate the anti tippers. Anti tippers according to the manual "were designed to prevent falls from the wheelchair". I am sure anti tippers do indeed prevent some people from falling. They are also completely impractical for any person who is independent and, to use manual jargon, a skilled rider.

Let me describe the wheelchair manual way to safely cross the street and ascend and descend a curb. Wheelchair manual way is an alternate universe I have never been to.

1. Check the weather forecast.  Avoid direct sunlight, sand, dirt, snow and all adverse weather conditions.
2. Never be alone. Always be dependent upon a caregiver or assistant.
3. At the curb come to a complete stop. Have your caretaker or assistant rotate the anti tippers.
4. Follow above steps 4 through 7.

The method for ascending and descending a step or curb is pure fantasy. An independent person such a myself has no assistant. The entire point of the wheelchair is to insure independence. When I cross the street I put my head down and in a crowded urban environment wear a baseball cap. I have learned it helps to keep my head down and make it impossible for bipeds to see my eyes. Without eye contact bipeds are far more likely to move laterally and out of my way. When I cross a street or approach a curb I do so with as much speed as humanly possible. When I am mere inches from the curb I pop a wheelie, lean forward and push the rear wheels as hard as humanly possible. Depending upon how fast I am moving I can independently ascend a curb of 6 to 8 inches. As for descending, I face the curb, pop a wheelie and drop of curb. This is effective but a bit jarring on the lower back. Sometimes if the concrete or asphalt is in bad repair I do exactly what the manual instructs me not to do--I negotiate the curb backwards.  Lean all the way forward and back off the curb. This is very effective and safe.

Aside from ascending and descending curbs, ramps too are dangerous. I kid you not! No ramp, slope, or hill should exceed 10 degrees and be more than 10 feet or 3 meters long. No slope or hill should ever be navigated alone.

If you need to use a short ramp 10 feet (3 meters) or less, the angle of the slope should not exceed 10 degrees, which corresponds to a slope of 17.63%, a rise or 1.74 feet (0.53 meters) over a distance of 10 feet (3 meters). Make sure to be assisted by a caregiver who has the physical ability to retain the wheelchair and its occupant. The wheelchair must always point facing up the slope. The caregiver should always remain in the bottom of the slope to retain the wheelchair. Always lock the anti tip in the safe position. Follow the same words of caution for a hill or slope of 10% or less. 

Again, these instructions are all too easy to laugh at but someone had to do some basic math. Calculations were made and perhaps some field testing was involved. Aside from the loss of independence, one must have an assistant mind you, I would estimate half of the ramps I regularly use are more than a 10% grade or 5.7 degree angle. Bridges come to mind as do many bike paths I use regularly. Needless to say, no ramp or slope should be navigated when wet. Slippery surfaces are especially dangerous.

The manual also includes an entire section for caregivers. I can only assume this section is where I learn how to tell my assistant or caregiver what to when the weather is perfect and environmental conditions permit me to go outside.  Among the highlights in the caregiver section include the fact a wheelchair user should never be left unattended. If unattended the caregiver should engage the wheelchair locks and place the beloved anti tippers in the safe position. Caregivers should also ensure the wheelchair has push handles and when pushing a wheelchair to stand in an upright position. It is equally important to "ask an experienced caregiver to explain safe assistance methods to you".

I am not sure what to tackle next. The wheelchair manual has truly endless fodder for laughs. Transferring out of the wheelchair is dangerous. Getting dressed in a wheelchair is strongly discouraged. Stairs are out of the question and warrant an entire bold faced paragraph that discuss the great danger they pose any wheelchair user. I also cannot under any circumstances use a bus or any paratransit service. The wheelchair manual is emphatic with regard to all mass transit. Motion Composites cannot, and does not, recommend any wheelchair transporting systems. For goodness sake, the manual is equally emphatic it is not safe to transport the wheelchair in a car. The front seat for the wheelchair is out of the question and even the rear seat is not recommended. It must be placed and secured in the rear of the vehicle, preferably the trunk. How am I, an expert rider, supposed to get the wheelchair in the trunk is not explained.  More tomorrow.

Friday, February 2, 2018

The Wheelchair Manual--Hilarity Abounds

My new wheelchair came with a 24 page manual. I have never read a wheelchair manual before. I am however a fan of manuals. I am one of the few people who actually reads manuals that come with a computer, smart phone, car, appliance, or any mechanical device. My son relentlessly teases me about this. When he visited me a few weeks ago we read over the wheelchair manual. Gales of laughter ensued. I have been using a wheelchair all wrong for over forty years!

Exactly what am I doing wrong? Apparently I am not supposed to go out in adverse environmental conditions. The performance of my wheelchair can be profoundly affected by sand, mud, rain, snow and rough surfaces. Apparently "exposure to water or excessive moisture can be damaging and may even cause the wheelchair to corrode over the long term. DO NOT leave your wheelchair in humid environments such as the bathroom (e.g. while taking a shower). Store the wheelchair in a dry and cool location. The wheelchair should be stored away from direct exposure to sunlight. If the wheelchair is wet, dry all parts with a cloth before storing it. DO NOT use your wheelchair in the shower, pool, or other water situations".

I am expected to avoid exposing my wheelchair to direct sun light. That will be a bit difficult given the fact the Denver area gets over 300 days of sunshine a year. I had no idea the bathroom was off limits. It is assumed every wheelchair user lives with another person--specifically a caretaker. This mysterious person is responsible for removing the wheelchair from the bathroom when the shower is on. What becomes quickly apparent when reading the manual is that no wheelchair user can be independent. The wheelchair itself is not designed to be used independently. At all times the wheelchair user should be assisted by caregivers. On each and every page there is mention of caregivers. On each and every page the manual, in no uncertain terms, the wheelchair user is warned to "CONSULT your doctor, nurse, or therapist". I don't know any physician that has a remote understanding of how to use a wheelchair. This advice makes no sense.

Certain items appeared to be constant in the manual and the wheelchair industry in general. Wheelchair manufacturers love anti tippers. A wheelchair should NEVER be used without anti tippers. The manual is emphatic about this. I did not order anti tippers for my new wheelchair. I did not order a seat belt either. The wheelchair came with a seat belt and anti tippers installed on the frame. Wheelchairs come with all sorts of crap attached to them. I get this. There is much profit to be made with the installation of needless parts. Anti tippers are not cheap. On my chair they cost $112. The positioning seat belt was $33.90. The padded calf strap was 72.00. Carbon fiber side clothing guards were $232. The list goes on and on. Thus the stated price of the wheelchair and the actual cost are very different. My wheelchair listed for $2,076.00. By the time I was done with various upgrades the price tripled. The carbon fiber frame upgrade alone was $1,360.00.

I am well aware the manual exists to cover Motion Composites (the Canadian manufacturer) liability. What I find bothersome are the assumptions made. A wheelchair such as mine is well designed for a "skilled rider", the term consistently used in the manual. Yet if used as suggested in the manual manual would render such a person powerless. The person using the wheelchair is emphatically directed to consult experts such as physicians, therapists, qualified technicians for adjusting the wheelchair etc. At no point is the "skilled rider" considered the expert.

My favorite part of the wheelchair manual is the short section on popping wheelies. Popping a wheelie is a "dangerous maneuver". The manual is litered with warnings symbolized by an exclamation point inside a triangle. The message is not subtle. Yet this does not stop Motion Composites from using the image of a man using the wheelchair popping a wheelie!

 However inside the manual there are all sorts of warning about this "dangerous maneuver".

Motion Composites knows "some wheelchair users will ignore this warning". This warning will indeed be ignored. Most wheelchairs are now being manufactured with small solid front wheels typically less than four inches making wheelies are an essential skill. I learned how to pop a wheelie long ago. The year was 1978. I did not consult my health care provider. I did not have an assistant who could catch me before I fell. I was not a skilled rider at the time. I learned how to pop a wheelie at college shortly after I was paralyzed. A friend explained how to pop a wheelie and demonstrated his skill.  I then proceeded to go to my dorm room, drink six cans of beer and give wheelies a try. After falling about a dozen times I had it down!

I can't help but wonder about the wheelchair manual. Do people in the industry actually believe what is written? Are anti tippers essential to a wheelchair user? Is popping a wheelie really dangerous? Do people actually design wheelchairs that cannot be used in adverse environmental conditions. I want to scoff at these questions but cannot. I think of my friends who use larger impressive, and complex power chairs. These modern marvels cost as much as a brand new car. I cannot tell you how many times I have seen a person using a power chair with a cheap plastic baggie over the controller in the rain. It makes no sense to me to manufacture a power chair with a controller that is not water proof. Does Motion Composites really expect my wheelchair to be magically removed and returned by a caregiver when I shower and steam up the bathroom? As I wrote yesterday, the wheelchair industry makes no sense. Tomorrow i will continue this theme as I further deconstruct the wheelchair owners manual.

Thursday, February 1, 2018

United Airlines Destroys My Wheelchair

Since I started this blog in 2007 I have posted on a regular basis. I write for myself but also for all those with a disability who oppose ableism. In recent weeks many people have reached out to me about my extended silence. Never before have I gone so long without posting at Bad Cripple. I am alive and well but in late October my very existence spun out of control. For quite some time I was deeply depressed. I considered giving up. Giving up writing. Giving up the fight for disability rights. Giving up teaching. Giving up on life. Despair overwhelmed me. All this was triggered by a single life altering event. On October 28, United Airlines destroyed my wheelchair. Upon arrival at Denver, my wheelchair came out of the cargo hold in pieces. I was stunned by the destruction. My wheelchair was over engineered in the extreme. It was heavy. It was rugged. It was built with triple redundancy so the frame was as rigid and strong as humanly possible. I cannot imagine the great force required to destroy my wheelchair but destroyed it was.

Since October 28, I have been in a mind numbing stupor. Upon seeing my wheelchair in pieces my first reaction was disbelief. I felt as though a part of my body had been amputated. My wheelchair is not akin to my legs--this terrible analogy is often used by health care professionals and those that do not use a wheelchair. My wheelchair is not a body part but rather an extension of who I am as a human being. As I sat in a deeply uncomfortable chair and in pain late at night in a nearly deserted airport I knew that my life had been radically alerted. I knew instantly that my life would be comprised for weeks if not months and possibly years.

Disbelief quickly gave way to mourning. I am not ashamed to admit that I shed many tears on October 28 and the weeks and months that followed. I castigated myself for flying. Every time I fly and my wheelchair is taken away and stored in the cargo hold I know there is a distinct possibility that it will be destroyed. The airline industry destroys wheelchairs and all sorts of mobility devices on a regular basis. As I cried none of this mattered. I missed my wheelchair. I knew exactly how to move. I knew how it rode when the front bearings were worn out or new. I knew the exact tire pressure at any time. I knew its tipping points. I knew how far I could lean forward, backwards or to the side without falling. I knew how it reacted to sub zero temperatures and the heat. I loved how the frame creaked when I was outside in frigid weather. My wheelchair rarely failed me. There was not one extra screw on the wheelchair. Every screw had a purpose. No more than three allen wrenches were required to make basic adjustments. A single allen wrench set could empower me to do anything I wanted to the frame. My wheelchair was a simple elegant design.

My loss is immeasurable. The destruction of my wheelchair absolutely devastated me. Since that night, I have wondered, feared really, about the quality of my life. I was shaken to my core in large part because I knew that it would be long time (months) before my life would return to normal. That night airline personnel were as shocked as I was by the destruction. Two United Airlines employees told me they had never seen anything like it in their careers. It was instantly apparent my wheelchair was destroyed beyond repair. Judge for yourself.

As the photographs illustrate one back upright was completely sheared off. The other upright was also broken and was held on by a thread. The bottom close up shows a part of the frame was sheared off and completely missing. What the photographs do not show is that the frame itself was badly bent and the left front wheel was damaged. Since I arrived in Denver on a late Saturday night, there was precious little help available. A ground maintenance crew worked with me to jury rig the wheelchair so it was somewhat operational. We used two squeege handles to use as temporary uprights. I had enough support to have a tenuous sense of balance. The best I could do was get out of the terminal, file a claim and hope a loaner wheelchair could be found. The odds of this happening quickly were nil. The fact I had to file the claim at the baggage claim office emphasized how unimportant the airline industry considers wheelchairs.

United Airline does not directly deal with broken wheelchairs. They use an outside contractor, Global Recovery Network, to find a loaner wheelchair and eventual replacement. On October 28 I was repeatedly assured United airlines would do everything in their power to replace my wheelchair. I was beyond skeptical. Wheelchairs are not cheap. Worse, wheelchairs are poorly made. Wheelchairs are not built for the end user in the United States. Wheelchairs are constructed to meet insurance standard price points. Wheelchairs are not built to last. A decent manual wheelchair costs thousands of dollars and likely will last three to five years when rigorously used. In short, I was screwed. Everything I wanted to accomplish in the months ahead would not get done. I dreaded the future.  

Beyond the emotional devastation, I was well aware I could not function. I could get around my apartment but there was no chance I could go outside. I could not shower because I use the back uprights to balance getting out of the tub. I was also at a high risk for a skin break down because I was sitting differently. The temporary uprights were flimsy at best so the next day it was off to the Home Depot for something, anything, that could operate as an upright.

Metal conduit pipe was the best solution. Along with copious amounts of duct tape I fashioned a weak upright. I still could not go outside but I was not at a significant risk for falling. The following days were spent on the phone with United Airlines and Global Recovery Network. Trying to get an appropriately fitting loaner wheelchair was going to be very difficult--think needle in a haystack. I have long legs that require my wheelchair be very high as in floor to seat height. Getting a loaner wheelchair and eventual replacement was going to be a slow laborious process. Most of my days were spent on the phone with United Airlines and Global Recovery Network. It took a week to get a loaner wheelchair that was remotely useful. Very quickly I realized that until a new wheelchair arrived pain was going to be a constant companion. Within seven days I also developed a superficial pressure sore on my buttocks. My seating position was extremely poor and placed too much pressure on my skin.

What sticks out in my mind months later is how well United Airlines and their subcontractor Global Recovery Network acted. Phone calls were returned promptly. Every person I spoke with was the consummate professional. United Airlines assured me again and again that I was to get the best replacement humanly possible. One gentleman from United who I particularly liked told me "we are in the airline business. We know nothing about wheelchairs. Get what you need. We broke your wheelchair and we will replace it. Global Recovery Network knows how to facilitate this." What I appreciated was the system in place to replace my wheelchair. There was no ambiguity. We broke your wheelchair. We will replace it.

Global Recovery Network did indeed know how to facilitate the process. What United Airlines and Global Recovery Network cannot do is make those charged within the durable medical industry for replacing wheelchairs act quickly or professionally. I have avoided the wheelchair industry because decades ago I realized they provided abysmal customer service. Ableism is rampant in the wheelchair industry. The end user is treated as an incompetent annoying child. Getting a new wheelchair I knew was going to be a painful and laborious process.

I do not understand the dysfunctional wheelchair industry. The complete and utter lack of professionalism is shocking. The dealer I was forced to interact with was terrible. Phone calls and emails took days to return. The reviews for the company on Glassdoor and multiple websites were scathing.  To get a phone call returned required pressure from United Airlines and Global Recovery.
The office person I had to deal with was point blank rude and condescending. Yes, they would replace my wheelchair but it would be done at their pace, at the times and dates they chose. It was not until November 8 that a person was even available to meet with me. This initial evaluation would start the process of ordering and selecting a wheelchair. While office personnel were miserable to deal with, the two people who actually came to my home were competent professionals. The seating specialist knew the industry and the technician knew how to adjust a wheelchair. Yet even these people can only do so much. It was not until the day before Thanksgiving, November 22, that two demo wheelchairs would arrive. Almost a full month had passed. A wheelchair had not even been ordered.

Did anyone think about the quality of my life? It is one thing for an airline to destroy a wheelchair but what is never ever discussed is the ramifications. I lost months of time. Even today some three months later I am still dealing with the fallout of my wheelchair being destroyed and not replaced in a timely fashion. Exactly what are we wheelchair users supposed to do? Well, what I did was cancel plans thanks to a skin sore that prevented me from sitting. Life got pushed to the wayside. Pain became a constant. Yet there was no rush, no sense of importance from the company to replace my wheelchair. For goodness sake, a month went by before I could even see the two wheelchairs that might work for me. This is unacceptable. An evaluation should have been done within 48 hours of my wheelchair being destroyed--that should be the industry standard. I should have been treated with respect by office staff at the durable medical goods company but was not. Amazingly, I was told by many the company I dealt with was better than all alternatives in the state of Colorado. United Airlines and Global Recovery Network shared my feelings. The wheelchair industry is dysfunctional and we people with a disability suffer. And believe me in the last months I have indeed suffered.

While I have not dealt with wheelchair manufacturers, I do follow the industry. It took a matter of days to realize my choices in terms of wheelchairs was limited. Based on my TiLite loaner wheelchair, I knew even the titanium frame would not last long. Everything about the TiLite line and its competitor Quickie models was cheap. Poorly constructed and designed, these wheelchairs were not meant to last. I estimated a frame would last two years at most. Only two wheelchairs would possibly work. A Panthera, the lightest wheelchair manufactured of carbon fiber or the Apex also made of carbon fiber made by Motion Composites. It took less than five minutes to reject the far more expensive Panthera (with upgrades it would cost well over $10,000). It is a beautiful wheelchair. It is slick, has great design lines, and phenomenal look. It really could be in a museum. What it had that I despised was branding everywhere. The wheelchair screamed money. Yes, this is a wheelchair for the 1% and they want the world to know it. As the architect Louis Sullivan argued, form follows function. The Panthera is a museum piece and not truly functional. Given the cost, it is wildly impractical. Forget about spare parts or be willing to wait a long time for them. Forget about working on the wheelchair if something goes wrong. More to the point, am I going to realistically put a $10,000 wheelchair in the hold of an airplane? Not a chance. I decided to go with the Apex wheelchair with the costly carbon fiber frame upgrade. I also added multiple upgrades such as spinergy wheels.

The Apex wheelchair arrived on a late afternoon shortly before Christmas.  The seating position is a radical change for me. Modern wheelchairs are squat, take up little space, have small front wheels, narrow one inch rear wheels, and are low to the ground. My old wheelchair was quite long, heavy, had 8x1 3/4 front wheels, 24x1 3/8 ths rear wheels, and a high back. It was a 1980s design and looked antiquated by modern standards. From time to time young paralyzed people would look at my wheelchair with a sort of curious disgust. I would laugh and tell them that my frame is likely older than they are!

As I write these words, I am sitting in my new wheelchair. It is all black and rather Darth Vader looking. I don't know my wheelchair well. The first four weeks using the wheelchair were filled with pain. I hurt everywhere from the changed seating position. All balance points were different. I worried about falling constantly. My skin was getting red from pressure in places it has never been before. I had to build up the amount of time I could sit in it daily. It has only been in the last week that I do not spend many hours in bed relieving the pressure on my skin. Getting on and off the train has been an adventure. With solid small front wheels I need to lean back far more often than I ever did when navigating cross walks. The first trip to Denver via the train was a nerve racking experience. Just imagine you have sat the same way for nearly forty years and suddenly your spouse throws out your favorite chair.

October 28 was life altering in ways that are hard to explain. By way of analogy, how can one explain paralysis to those who are not paralyzed? Any competent neurologist would classify me as a T-3 complete paraplegic. How do I explain that I do indeed have sensation but far from typical. How do I explain the constant burning in my hips that in no way conforms to a pain scale of one to ten? How do I explain that cleaning a wound on my foot is painful but only hours later? How do I explain I could be outside all day in frigid temperatures skiing or biking but get cold eight or nine hours later? How do I explain the destruction of my wheelchair left me unable to write for months on end? How do I explain the emotional trauma caused by the destruction of my wheelchair? How do I explain the love lost for my old wheelchair? How do I explain the flood of tears of tears as I threw my old wheelchair frame in a dumpster? How do I explain how outrageous it is that airlines destroy wheelchairs on a regular basis? How do I explain the weeks and months lost?

I do not have any answers for the above.  I do know the destruction of my wheelchair has changed the direction of my life. It has thrown me in a way beyond that is beyond imagination. A part of me died on October 28. It was not until today, February 1, that I can begin to adapt; but adapt I will. We cripples are world class adapters. I have the potential to fall in love with my new wheelchair. I liken my experience to the birth of a child. My wheelchair is like a new born infant who I don't know yet love. There is much for me to learn. What I don't know is if my wheelchair has a soul. To date, it feels cold and clinical. Carbon fiber is light weight and strong. Indeed, the frame weighs just 9.2 pounds and feels as rigid as steel triple its weight. I have not become one with my wheelchair. The human wheelchair relationship is akin to a unique symbiotic relationship. What I need now is time. Time to forge a relationship with the amazing piece of technology I use and sit in. To this end, I will be posting a lot in the coming days about my relationship with my new wheelchair. I do so in the effort to bridge the cultural gap between those who use a wheelchair and those that do not. Unlike the bipeds that surround me, absolutely no stigma is attached to wheelchair use. In fact, I see a wheelchair as one of the most empowering inventions ever made. The problem as I see it (and always have seen it since I read the Body Silent) is cultural. We as a culture devalue those who are different. The more obvious the difference, the greater the stigma. This cultural divide is hysterically evident in the Apex wheelchair manual. About the only laughs I have had in recent months has been reading the wheelchair manual. For the last 40 years I have been using a wheelchair all wrong! I will be posting about this frequently as it is rich fodder for humor and cultural analysis. So yes I am back. May the bigoted bipeds tremble as I roar about in my sleek new rigid carbon fiber wheelchair.