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Tuesday, April 17, 2018

Road Races: The Bad Old Days

I continue to go through Denver Public library archives about the disability rights movement in Colorado and beyond. It strikes me as shocking how recently blatant disability based discrimination was accepted as the norm. I lived a good bit of this history and experienced significant discrimination as a young man. I recall being turned away from multiple airlines because I was deemed a "flight safety risk". I was spit on when I tried to get on New York City MTA buses when lifts were being introduced in the early 1980s. I had cab drivers in New York City refuse to stop for me on a regular basis. I have encountered inaccessible elevators to subway systems nationwide. I was once taken out of Yankee Stadium in handcuffs by the police who had no idea how to arrest me in 1978.

Pardon me if I do not wax nostalgic about the olden days. The olden days were ripe with disability based discrimination. Lives, careers and dreams were shattered on a regular basis. I came of age before ADAPT and well before legislation existed to empower people with a disability.  I was continually barred from participating and attending many public events in New York City where I came of age in my 20s. Concerts at Lincoln Center or sporting events at Madison Square Garden were grossly inaccessible. At old Shea Stadium handicapped seating was behind a chain link fence next to barely functional toilets that stunk of urine. Using a wheelchair guaranteed the worst seat at all venues--disability was ghettoized. This was not a New York City problem--the presence of people with a disability was an affront. By the late 1970s and early 1980s we anonymous people with a disability had reached a saturation point. Countless people had enough and pushed back. I was among those that pushed back. I had it easy--I was among the 1% and privileged. Sure I encountered disability based discrimination on a regular basis but I was not fighting to get out of a nursing home. I was fighting for the right to privileged activities--going to college, graduate school, and, for a while in my early 20s, to participate in road races. I was interested in marathons. Racing wheelchairs were about to be developed. The wheelchair industry was about to radically change and adaptive sports was in its infancy. I was an early pioneer in wheelchair racing but I was truly a peripheral figure. I was an ordinary young man who simply wanted to stay in shape and see how fast I could cover some serious miles. I was not a serious athlete nor was I designing adaptive sports equipment. I wanted to be a scholar and remain in good shape. To this end, I tried to enter New York City Road Runner events. Here I hit a veritable brick wall. The founder of the New York City marathon, Fred Lebow, hated the idea of wheelchair participants. For years the NYC Road Runners club fought tooth and nail to exclude wheelchair racers. Lebow, at a notorious closed door meeting, supposedly said with ferocity that he would not allow the marathon to be turned into a "freak show".  Unlike other major marathons that quickly incorporated wheelchair racers, Lebow and the NYC Road Runners Club did their level best to make the NYC marathon inaccessible to all people with a disability. Wheelchair racers were deemed a significant risk to themselves and others (a common place charge at the time). Marty Ball was among the first serious marathoners to push back. He registered to participate in the NYC marathon under an assumed name. For more on Ball see: http://www.wheel-life.org/marty-ball-lifelong-warrior-for-better-wheelchairs-wheelchair-sports/

I have written about the long sordid history of the NYC marathon elsewhere. See: http://www.raggededgemagazine.com/focus/26miles.html Suffice it to say, it took decades for the New York City to be inclusive to elite and ordinary wheelchair racers. Much work remains to be done to this day as wheelchair athletes have continually encountered problems in NYC and other large events. As I now live in adaptive sports mecca of Denver and nearby Colorado Springs I naively thought Western states would have been far more inclusive. I was wrong. Last week I came across a story about the first Bolder Boulder Run. The first Bolder Boulder run was held in 1979. Since its inception the Bolder Boulder run has grown exponentially. It is now the premier 10k run in the nation. It is also one of the largest running events in the world (it is the 3rd largest running race in the USA and 7th largest in the world). In 1979 however just 2,700 people participated. By 1990, when the first pro wheelchair race was introduced, over 26,000 people participated. A few years ago over 50,000 participated. See: https://bb10k.bolderboulder.com/about-bb10k/bb-history/ Note the year 1990--the first pro wheelchair race was introduced. Yes, it took nearly two decades for wheelchair athletes to be recognized. Like the NYC marathon, I suspect the main reason it took so long was because of the Bolder Boulder race organizer. Like Fred Lebow, Steve Bosely was adamantly against the inclusion of wheelchair athletes. After the inaugural race I read a story about Bosely: "Bolder Boulder Not So Bold When it Comes to Wheelchair Racers". Marty Ball participated and he along with many other wheelchair racers complained about multiple needless obstacles during the race. After the race, officials were angry and publicly vowed to exclude wheelchair racers from the race the following year. Among those officials opposed to the participation of any wheelchair racer was Bosley. While Bosely "sympathized with the plight of wheelchair racers" for unspecified logistical reasons he firmly believed they represented a risk to themselves and others. Bosley noted accidents had taken place involving wheelchair racers and they had the obligation to avoid future accidents. He petulantly noted "Our staff has discussed the wheelchair issue probably more than any single issue in the last seven or eight years and we've pretty much come to the conclusion that what we're putting on is a foot race and wheelchairs have no place".  Bosley went on to state:

First, a wheelchair racer who completes the course in 32 minutes and a runner who completes a race in 32 minutes are two completely different things. A wheelchair racer goes extremely fast--up to 35MPH on downhills--and very slow on the uphills. So a runner and a wheelchair racer who start at the same time will constantly be conflicting with each others paths during the race. Second, some of the slower wheelchair racers take more than three hours to complete the course. This causes us problems because we're on a very tight schedule.

This is the exact logic Fred Lebow used in NYC to effectively bar wheelchair athletes from participating. Toward the end of his life, Lebow changed his mind about the inclusion of wheelchair racers. I have no idea if Bosely had a similar such change of heart. Regardless, Bosely spent much of his life expanding and advocating for the Bolder Boulder race. As of 2017, Bosely was on the Board of Regents at the University of Colorado and member of the Runner USA Hall of Fame. Clearly, his opposition to the inclusion of wheelchair racers in 1979 did not hurt his reputation nor impede the Bolder Boulder 10k race from becoming a premier event.

While I no longer have an interest in participating in marathons or running events, discrimination at road races continues. The Paralympics continue to operate in a media vacuum and receive virtually no press. Worse, the X Games that once highly touted adaptive sports has discontinued Mono Skier  X events that was quite popular. The few stories that appear in press about adaptive athletes are uniformly terrible. These serious athletes are reduced to feel good stories about "overcoming disability". Few if any Paralympians are household names. Perhaps the best know Paralympian, Tatyana McFadden, refused to participate in the Red Bull's Wings for Life Run in 2015. McFadden wrote:

New rules within the Red Bull Wings of Life event stipulated that I couldn’t race in my racing chair and would be, instead, required to race in an everyday wheelchair and accompanied by a “support person.” I was both bewildered and upset. I felt it would be like asking other runners to run in flip flops.
The goal of Red Bull’s Wings of Life program is, admirably, to find a cure for spinal cord injuries. Their efforts should be applauded and encouraged. More companies need to step up to the plate, like them, and become socially responsible.
However, this change is inadvertently reinforcing the idea that those of us with existing spinal cord injuries are somehow less than whole persons. My injury is permanent. It has resulted in atrophied legs that I will never be able to walk on. That is the reality of how my body works. I accept this. But it does not define who I am. In the course of my life, I have discovered my own talents and abilities within the body that I have been given. I dislike the term disability, it infers I do not have ability or my abilities are somehow less than that of others. On the contrary, I have abilities others don’t.
In addition, by creating one rule for all disabled people Red Bull is perpetuating a stereotype that people with disabilities are all the same and all need assistance — and, by themselves, are not capable of doing something like racing. Instead it should be a person’s right on how they choose to race, be it with a guide runner, prosthetic leg, everyday wheelchair or a racing wheelchair. http://tatyanamcfadden.com/redbull/

Last year I had a similar the same experience. I wanted to participate in a handcycle race and a few days before the event was informed via email that any person with a disability participating using a hand cycle had to be accompanied by a support person. Here we are nearly 30 years post ADA and the infantilization of people with a disability remains firmly entrenched. Imagine if a woman was told she could not participate in a running race without a support person. Outrage would ensue. This is why I remain furious and frustrated that ableism stubbornly clings to disability. We people with a disability remain the other--always on the outside looking in--liminal in more ways than I can articulate. I for one have had it. Enough is enough.

Monday, April 9, 2018

Crossing the Street Unaccompanied

Disability based street harassment in Denver is minimal. This is, of course, a sweeping generalization. Afterall, just a few months ago a well-dressed businessman in a swanky part of downtown Denver stated: "Why don't you just die already". Such comments directed my way always take place when I am alone and have the audacity to venture out the door by myself. I never cease to be amazed how people react to my presence. Yesterday, however, I was truly stunned by one person's reaction to my presence. I was going to the train station--something I have done countless times. I am on the sidewalk when I hear a car jam on the brakes. I did not think much of this. The car was on the other side of the road median and going in the opposite direction. Something seemed odd and I looked across the road to see a woman come to a complete stop, put her hazard lights on, get out of her car and walk across two lanes of road traffic in my direction. As she approached me she said in a loud voice "You can't cross the street by yourself!" The woman appeared to be highly agitated. In a voice getting louder and more shrill by the minute she stated "You just can't cross the street by yourself. I will help you." I am instantly wary and somewhat concerned for my safety as well as hers. Is this woman mentally altered? She just crossed two lanes of traffic to help me cross the street--this is not remotely appropriate behavior. And then she said what were to me the magic words: "Where is your caretaker?" Guarded but relieved I figured this woman was just an ignorant ableist and not a threat. I simply gave the woman an icy glare, moved perpendicular to the sidewalk making it impossible for her to attempt to push my wheelchair. Realizing her failure to help, and I assume save me, the woman returned to her car. She was unhappy and decidedly unimpressed with me. The feeling was mutual.  Without further commentary or assistance crossing the street the woman returned to her car and I continued on to the train station.

Welcome to the wonderful world of paralysis. Social interactions for all wheelchair users can and often are severely skewed. Over the last day or so since the above interaction I have wondered where do people learn about disability and more specifically about wheelchair use. Many I have known without a disability need to think if I use a power wheelchair versus a manual wheelchair. To me the difference between a power wheelchair and a manual wheelchair is profound--they can never be misunderstood for one another. My frustration is that ignorance and stigma stubbornly cling to people that use a wheelchair. The fact is ableism abounds. Ableism is part of the fabric of society. All the laws in all the courts of this nation cannot root out ableism without the social demand for equality. No such demand exists. People with a disability are damaged goods, our existence profoundly inferior. My civil rights are always open to question. I am routinely underestimated and regularly congratulated for doing the ordinary. As I wondered about this woman, I had to accept a basic truth--such interactions hurt. I am filled with hurt. I am wary of typical others. Every time I go out the door I know I might be harassed. Frankly, I am sick of it. When, I wonder, is it going to end? The answer to the aforementioned question is a depressing never. The sort of ableism this woman absorbed is almost impossible to root out. Indeed, it will take generations.

The woman in question made me realize just how casual ableism is. Ableism is also as casual as it is deadly.  It is easy to internalize ableism. It is all too easy to think something is wrong with me--how else does one explain a never ending sea of insults, slights, and outrageous behaviors. It is easy to wonder do I have the right to get on a bus or plane or train? As I pass dozens of inaccessible restaurants on Larimer Street am I content that in seven blocks there is one restaurant without steps and adequate room to navigate the dining room aisles. Why is it that when I went out for a fancy meal a week ago I was stunned when not a single server or fellow diner bumped into my wheelchair? Should this not be the norm? Should I not be able to enter all restaurants? The answer is, of course, an emphatic yes. But casual ableism abounds--ableism is everywhere. Only once in a while is ableism over the top--the businessman who said I should just die. The unknown woman who stopped her car and insisted on helping me across the street. These people I do not fear. It is the closet ableist, the good-natured pillar of the community who has my best interests at heart that I fear. These people can justify anything. Justifying a lack of access and inclusion is quite easy--a litany of excuses have been used in the past and present. I just cannot be positive for I see the hard won civil rights we people with a disability fought for under attack on multiple fronts--from a complete stranger who harassed me to a GOP bent on eliminating all social services that enable people to live and work in the community.

Tuesday, April 3, 2018

The Joy of New Wheelchair Discoveries

I am still getting accustom to using my new wheelchair. After nearly four months, I can relax as I navigate the world. I am no longer worried about falling nor am I in pain at the end of the day. I am, to use silly wheelchair manual lingo, an expert user. This does not mean I enjoy the symbiotic relationship I enjoyed with my old wheelchair. That wheelchair was part of me--it was an extension of my body and perhaps my soul. With my new wheelchair, I am awkward in certain ordinary situations. I am extremely cautious at curb cuts and often come to a near stop before popping a slight wheelie to get over rocks, large cracks in the cement, and rough terrain. I especially struggle night. I cannot see small rocks (if I am not leaning back on my rear wheels enough and I hit a rock with the front wheels I will get jarred). I am especially wary of late night tranfers from bed to wheelchair as I do not want to end up on the floor. Transfers in and out of cars remain awkward and time consuming in comparison to the past. Despite these observations, every day I become more comfortable with my new wheelchair.

The above is the downside to using a radically different wheelchair--and not by choice I should add (thank you United airlines for altering my life). Yet I am rapidly learning the strengths of my new wheelchair. At Union Station in downtown Denver there is an underground portion of the station that connects the furthest to closest tracks. There is a wide concourse at least two or three blocks long. I love this part of the station. I move fast--when alone I move at warp speed with little effort. I pass bipeds left and right. I have no idea how fast I go but it gives me great pleasure. If I were bound to my feet for locomotion, I would guess I travel at a brisk jog or slow run. As I sped through the concourse I often think I cannot wait to go to an airport! I will speed through a concourse like never before.

Over the weekend, I discovered two new wheelchair joys. I was out with a friend to enjoy a rare dinner out. Unfortunately, the restaurant we ate in was atrocious. The inside of the building was dirty, the food was terrible, and my wheels felt greasy when we left. We each had indigestion on the way home. I felt bad. The restaurant was one I picked out. Oops. On the walk back to the train station I was pretty grumpy. Suddenly, the wind kicked up. It had been windy all day but as anyone who has spent time in the West knows the weather can change dramatically in minutes. During the day we had strong wind gusts up to 40 to 50 MPH. However, by early evening the wind had died down--or so I thought. Suddenly a strong gust of wind hit us from behind. I started to fly forward. I could feel the wind blowing me in a way I have never felt before. I started to go fast--I mean really fast. I started to hold on the push rims to slow my momentum and thought to myself why? Why am I slowing down? Well, I was trying to be polite. The poor biped with me felt no such joy. I thought screw it, laughed loudly, held my arms out to catch more wind and let myself go. Without pushing the wind started to propel me forward. It was the best sensation I have felt in years! I once again felt one with my wheelchair.

The symbiotic relationship with my wheelchair is coming back in fits and starts. I realized this with a second wonderful experience. I have started to understand downtown Denver. Without any semblance of directional ability, it has taken me seven months to not get lost in the city center. Since arriving in July I have mastered the train system and am now trying to learn the bus system. I have always been drawn to mass transit and thanks to ADAPT Denver has one of the nations most accessible systems in the nation. The main tourist area in Denver is the 16th street mall. There is a free shuttle bus that I use often and on a crowded weekend I used it to go from Union Station to Civic Center Park. Rather than take a crowded bus back to Union station I decided to walk the length of the mall. I knew the walk back was largely down hill. What I did not know was how much fun I was going to have. It was indeed downhill but thanks to the free bus, peddle cabs, bipeds on long boards, and the bike lane the mall is ideal for navigating on wheels. I took great joy in speeding along and meandering between side walks, the street, and bike lanes. I think I made the mile long walk in under 5 minutes. I was able to weave in and out of traffic, around gaggles of bipeds, and tourists. Better yet, not a single person person made an unwanted or inappropriate comment--a rarity when I am alone in a major city.

I wish bipeds understood the wheelchair human connection. The idea that one could be "wheelchair bound" is laughable--it is one of the most ignorant statements I have come across in 40+ years of wheelchair use. I am no more bound to my wheelchair than a biped is bound to his or her feet. I am as protective of my wheelchair as I am of my body. If any person sits in my wheelchair I am instantly angry. If anyone so much as touches my wheelchair I will make a cutting remark. The bottom line--do not mess with my wheelchair. Indeed, anyone that touches or makes an unwanted contact with my wheelchair is in my estimation committting a crime. Imagine if the courts recognized the importance of a wheelchair. Imagine if we as a society valued those that use wheelchairs and acknowledged how empowering a wheelchair is. Imagine if we valued the inclusion of those that use wheelchairs. Imagine if we forcefully rejected the notion people with a disability were special. Imagine if all public venues were accessible--and I do not mean an abscure rear entrance no one knows how to locate. Imagine if wheelchair users could get in the front door of all buildings and all hotels, motels, trains, planes, and buses. This sort of utopia does not exist. Unfortunately I doubt I will live long enough for such a utopia to emerge. I suppose this puts me in the same position as Thorstein Veblen who I have long admired. He too imagined utopian societies. He was a social critique as am I. What we need however is much more fundamental. We need the social mandate and will to demand society be made accessible to all. What we need are policy prescribers who seek to revolutionize society. I have no interest in incremental changes but rather a social revolution. Simply put, when it comes to access and inclusion there are no half measures.

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: http://atlantiscommunity.org 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.