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Thursday, November 13, 2014

Do Not Anger Pre ADA Cripples

My last post was written in support of my good friend and colleague Stephen Kuusisto. He is angry and upset about recent financial decisions made by Guiding Eyes for the Blind that will adversely impact the lives and careers of guide dog trainers and by extension the blind men and women who will form a guide dog team. I get his anger. I admire Kuusisto's willingness to publicly object. It would be far easier to remain silent. And, here is the rub. People with a disability who came of age before the ADA existed spent their childhoods being told what they cannot do. We people with a disability were barred from the right to an eduction until 1975. We were told we were a fire hazard and that our very existence was too upsetting to other children. With parental support, people like Kuusisto and myself fought for an education. Secondary schools were hostile to us as were virtually all colleges and universities. The general public had no idea what to do with us. One thing was for sure--our desire to lead a typical life was seen as an affront. We were uppity. We cripples had no rights. We were known to be an expensive burden that was rejecting the charitable hands that were feeding us. Hence when I became a bus buddy in the early 1980s and fought to get on MTA buses with wheelchair lifts more than once my fellow citizens spit on me. Kuusisto and I were repeatedly told what we could not do. The bias and stigma associated with disability was deeply entrenched. Even when each of us got advanced we continued to encounter one obstacle after another. The result of routine degradation and discrimination was the creation of firm resolve. Go ahead and tell me what I cannot do. I will turn around and not only accomplish the supposedly impossible but do it in a world class fashion. I not only wanted to get ahead in academics I wanted to crush my peers. Hence, we pre ADA cripples became ambitious and hard. Childhood taunts and the bigotry of adults only made us work harder. In short, we pre ADA cripples are highly skilled at defending our rights and looking out for our peers. Both of Kuusisto and I know not all people with a disability had the financial, personal, familial, and professional support that enabled us to advocate for others with a disability. For myself, I consider such advocacy a moral obligation as an unknown number of people with a disability slipped into silence and quietly lived in an institution or family home from which they never emerged.

Kuusisto and I as pre ADA cripples know our lives are worth living. Many people think otherwise.  There is no question disability based bias is rampant.  How else can one justify the existence of QUALY--quality adjusted life year--in health care. Enter Peter Singer and utilitarian philosophy. QUALY is as much about social capital as it is about economics.  Living with a disability is expensive. People deeply resent the expense associated with educating children with "special needs". I have been to countless meetings when the first line item cut had to do with making a school or university building accessible or funding a program for a small group of students with a disability.   The point is, we are living in an era of the glorification of money and power. Wealth distribution is increasingly diverted to the so called 1% Exactly how rich does one need to be? Well, for the 1% the answer is an obscene amount of wealth. Money is power. Capitalism has run amuck and the 1% does not care about anything else but money. This has filtered through our entire capitalistic system and has gripped all industries. This now includes guide dog schools. Kuusisto wrote:

By reducing retirement benefits; summarily dismissing senior staff; and pretending that these things are necessary in order to serve the blind, the new style administrators and Wall Street directors of the guide dog schools are destroying the morale and undermining the security of people who have given their “all” for blind people. 
 The guide dog schools have plenty of money. These heartless management ideas come from the current corporate driven management idea fix—that reducing investment in employees is good for the bottom line. But I say this is hogwash. And I say the very idea—the very adoption of Bain Capitalism where guide dog employees are concerned puts the blind at risk. 
I can say these things because I’m not afraid. The guide dog schools may well put me on a “do not admit” list and prevent me from getting another dog. But I can live with myself. I can’t live with the knowledge that guide dog trainers are now working in fear for their very livelihoods.   

Kuusisto has put himself in harm's away. There is no question the twelve guide dogs schools in the country could black ball him. His life could be adversely affected if he cannot obtain another guide dog when Nira retires. Let's address risk. By risk I fear a blind person will be killed some day as a result of training that did not include the expertise required. This should keep people up at night. As for the financial concerns of guide dogs schools, they have no significant worries. Give me a break. The photos of cute labrador puppies are a cash cow. In 2012 Guiding Eyes of the Blind according to Charity Navigator, total revenue was $25,793 537. Total functional expenses amounted to $22,907,296. I call this breaking even.  This is good. Very good in fact. Here is the big number, the really important number. Guiding Eyes for the Blind Net assets amount to $56,974,077. If you do not believe me see this link:
Here is more financial evidence. As a charity, Guiding Eyes for the Blind is required by law to file a form 990 with the IRS. This is a matter of public record. Read this 47 page report. I am no financial whiz but I cannot see any justification for the actions of the Guiding Eyes for the Blind.
990 link:
At the end of the day we have a social failure. What is lost is that guide dog trainers "career" is about in the words of Kuusisto the "knowledge and empathy and a profound awareness of disability in all its myriad forms". This knowledge and empathy money cannot buy. However, money can undermine it.  

Monday, November 10, 2014

A Lost Art: Changing Lives of the Better

I almost took a bad fall this morning. I was transferring from my wheelchair to my car and I was being lazy. My right leg was not where it should have been. I knew this but was in a rush and as I transferred I landed in limbo land. I was not in my wheelchair nor had I landed on the car seat. Falling to the ground was a very bad option and my brain automatically kicked into self preservation mode. I leaned heavily into the car and held on to the center console. I dragged my lower body into the car with all my power until I was relatively safe. I then reached down to lift my legs with one hand and with the other hand pulled on the center console. At the same time I twisted my torso and safely maneuvered myself on the car seat. I will be more careful tomorrow.

I did not fall because of the lessons I was taught 38 years ago.  Rehabilitation circa 1978 was hard core. Rehabilitation was a long arduous process. It was in fact a form of brain washing that was in retrospect the best thing that ever happened to me. Autonomy was drummed into my brain. Never ask for help. You must be self sufficient. I was taught how to dress myself. I was taught to make transfers from wheelchair to toilet. I was taught to turn my body every two hours all night long. I did this for many years. I was taught about skin care and until 2010 had avoided a severe wound. I was taught how to pop a curb and do wheelies. I was taught how to fall to the ground and get back in my wheelchair. I was taught how to crawl without injuring myself in case my wheelchair was out of reach.  I was taught how to get in and out my car. I did not use a model car as most rehabilitation units now use. I was taught how to transfer into my car in all condition (snow, rain and wind). I was taught to transfer on steep hills with an incline up and an incline down. Physical therapists told me to forget about life pre spinal cord injury. My old life was over and you must be fully autonomous. I was repeatedly told my new life requires creativity and adaptation. I could not rely on anyone else. To do so was to become less of a human being. Physical Therapists worked with me daily for months on end. The patient to physical therapist ratio was one to one. These young women, and they were almost all women, taught me lessons that have lasted a lifetime. They held me when I cried. They laughed with me and endured my sadness and rage. What they did changed my life. They made my life possible. They also forged a life long bond with those they worked with. Without them I would have taken a bad fall today.

Rehabilitation circa 1978 was primitive. It was an intense primal experience. Fear drove me. I hated rehabilitation but I knew it was a must. I needed to be taught how to care for my body to insure I was going to have the sort of life I envisioned for myself. I worked extremely hard. I listened carefully and pushed my body as hard as humanly possible. In long and difficult physical therapy sessions I worked out until my muscles quivered with exhaustion. My day began early and by dinner time I was mentally and physically spent. The goal was to make me independent, to master my activities of daily living. No time table was placed on me. I would be discharged when one and all agreed I was ready for a world that was hostile to my existence. Prepared I was.

Fast forward to today. Recently paralyzed people get mere weeks in rehabilitation. Many leave woefully unprepared for the real world. Most have physical therapy classes. A physical therapist will work with many people at the same time and direct physical therapy assistants to carryout her therapeutic rehabilitation plan. This is cost efficient. It is also negates the bond I formed with my physical therapists. Physical therapy is more than just about the body. It is a way of thinking about paralysis and disability in general. I learned anything is possible if you work hard enough. This belief system cannot be taught or absorbed in a group lesson.  I am not suggesting we return to the primitive ways of the past.  Spinal cord injuries, thanks to broad based medical advances at the time of injury, are far more complex and designed to limit damage. In the olden days one had a complete or incomplete injury. Today, an entire spectrum exists within spinal cord injury. No two injuries are the same. No injury is static. To be blunt the cookie cutter cost saving brand of physical therapy practiced today is ineffective. The failure to prepare men and women for life post spinal cord injury was at the forefront of my mind after I had a long chat with my friend and colleague Stephen Kuusisto. He remains deeply troubled that the premier guide dog school in the country, Guiding Eyes for the Blind has adopted to use his words "the Bain Capital model of employee management". 

Kuusisto has every right to be angry and worried. There are just twelve guide dog schools in the country. All guide dog schools operate as charities. None charge their clients for the dogs who will become part of a remarkable team. By remarkable I mean empowering. Guide dog trainers do exactly what the physical therapists did for me except they are not nearly as well paid. They change lives for the better. No job could be more rewarding. I had the deepest respect for guide dog schools. Note my use of the past tense. I am not an expert about training guide dogs. Indeed, I am far from expert. But I do know what the implications are for people who are blind. I have observed the cost cutting insurance dictated approach to physical therapy. It has devastated rehabilitation and the ability for people post spinal cord injury to resume their life. The implications for blind people are more dangerous. Without experienced guide dog trainers, who will understandably leave the profession given the lack of adequate retirement plans, one can readily imagine the knowledge acquired over time is being sucked out of the guide dog schools as I write these words. Experienced trainers could justify bad pay knowing they at least had a good retirement plan. Not anymore. Who will suffer? People who are blind.

For those interested, and that should be every single person that reads my blog, please read what Kuusisto has written at his outstanding blog Planet of the Blind. Link:
Kuusisto has generously allowed me to quote his entire post "What's Wrong with the Guide Dog Schools?" below. If you are moved by my words was well Kuusisto's words please write or call the Guiding Eyes for the Blind President and CEO Thomas Planek and let them know you support guide dog trainers and object to the Bain Capital model Kuusisto and I rail against. The general phone # is 914 245-4024.  One last point. The suggestion to call and complain was my idea and mine alone. Here is Kuusisto:

Its not easy to be an advocate for human rights because the engines of neo-liberalism smog the village square. I think history will show this is an age of ruinous acquiescence, a time when its easier to prefer convenience over complexity–a hint of Al Gore here–truth is always inconvenient.
Recently some of the schools that train guide dogs for the blind, non-profit agencies all, have adopted the Bain Capital model of employee management, laying off vital staff (translate “older” and “experienced” if you like) and several have chosen to reduce staff retirement benefits by shelving long standing retirement plans for 403B packages–plans designed for churches and non-profits. Almost no one can actually retire on a 403B plan–they're essentially “cafeteria” plans that allow employees to put aside money from their pay checks in a temporarily non taxable and limited investment fund. 
There are roughly twelve guide dog schools in the United States and all are charities. Each breeds and trains dogs for the blind. Because 80% of the blind are unemployed (even twenty five years after the adoption of the Americans with Disabilities Act) the guide dog schools provide dogs to blind clients free of charge. The cost of a guide dog is guess-estimated to be around $40,000 per unit–that is, per finished product–a successful dog and person team. It's expensive work. Puppies must be bred, then raised until they're old enough for training at about a year and a half. Training requires 6-8 months of consistent, daily work by professional guide dog trainers who teach dogs how to navigate country roads and inner city traffic, all the while encouraging each and every dog to trust its instincts and recognize it must often think for itself and countermand its human partner's orders. 
Guide dog trainers have demanding jobs: they work in rain and snow. They walk thousands of miles a year. Moreover they undergo a long and poorly paid apprenticeship with a senior trainer to master the rare skills necessary both to train exceptional dogs and work with blind people. When they finally become guide dog trainers after years of brutally hard work they're still paid rather poorly. The average guide dog trainer makes a salary roughly equivalent to the earnings of a high school teacher. But the rewards of guide dog training are great. You work with dogs, help people, and change lives for the better. 
In former times a guide dog trainer could imagine having a career. Although they were poorly paid, they could count on a solid retirement plan. In general guide dog schools valued veteran employees who possessed long experience working with the blind and their dogs. 
Enter neo-liberalism: “capitalism with the gloves off” as Robert W. McChesney calls it. 
Two years ago “The Seeing Eye” (the oldest guide dog school in America) suddenly fired over twenty long time employees–trainers, field representatives, even a veterinarian. The fired staff didn't even have time to clean out their desks. They were simply told not to come back. 
Following suit, “Guide Dogs for the Blind” a famous school in California eliminated staff. Later, after protests, employees there were reinstated. 
If you're blind and travel with a guide dog you count on veteran staff: folks who know the complex and challenging circumstances of vision loss and safe mobility. Additionally you want to be assured those who work with you–support you–are being taken care of. 
Now “Guiding Eyes for the Blind” –the guide dog school from which I've received three guide dogs, and where I once worked, where in fact I played a role in hiring some extraordinary people, has announced summarily, without warning, they're eliminating their retirement benefits plan in favor of a second rate 403B. 
In this digital age with its “Instant Karma” public relations administrators can say almost anything. When I posted my dismay about Guiding Eyes treatment of its employees, one PR person wrote on Facebook that the new retirement plan was long studied and it was necessary to ensure that guide dogs can be provided free of charge to blind people. 
The guide dog schools I've mentioned have combined endowments in the neighborhood of 700 million dollars. I'm not convinced cutting veteran staff and making it harder for people to achieve a career is necessary at all. What I am convinced of is that the justifications of neo-liberalism have become the narrative template of management in our time. Everything should be lean and mean. 
The alumni of the guide dog schools can't really protest. They're not cash paying customers like college alums. Many guide dog users fear criticizing the schools will hurt them–they'll be branded as “difficult” or “disloyal” or “uppity”. 
Right now I'm finishing a book about guide dog life for Simon and Schuster. I've been a loyal and upbeat spokesman for the guide dog movement for years, appearing on national TV and writing widely on the advantages of traveling with a professionally trained dog. 
I fear for my friends who train the dogs. I dare to say so. 

Sunday, November 9, 2014

Too Nice?

One of the very few things I do not like about my little rental home is the lack of a washing machine and dryer. I was initially worried. Last academic year when the Red Roof Inn was my home away from home I used a laundromat in East Syracuse. I was not impressed. The cleanliness was far from ideal and the machines were ancient. However the same company has a laundromat in my town. Thankfully the local laundromat is exceptionally clean and, better yet, has free wifi. I do my laundry once a week and as winter sets in will likely do laundry twice a week. I do not mind this one iota however I am careful when I do laundry. Prior to day light savings, I did laundry just before or after sunrise on Sunday. I rarely interacted with others as I was done by 7AM--and yes this was design. I continue to think of times the laundromat will be empty. Given the little college that is in town, night time treks are a bad idea. I have no interest in interacting with college students. I love college students but that love is restricted to the classroom where they are on their best behavior. Post 7AM mornings on the weekend are a bad idea--especially on Sunday as the holy rollers are likely to want to pray for me. Being an anonymous cripple takes some advanced planning, flexibility, and creativity. I have been very lucky to date. I have come across a few college students who had inhaled too much, a few men my age who were very drunk, one parent that was dreadful, and more than a few people who looked like they had a hard time scratching enough cash together to do laundry. There many people down on their luck in the Syracuse area. The poor abound in fact.

My laundry luck ran out yesterday afternoon. I had a lot of laundry--much more than usual. I put my laundry basket on my lap and it is was over flowing and stinky. Dirty clothes and towels were piled up to my neck. I can manage the double doors but it is a somewhat slower process than normal. As I get through the first set of doors a man is standing in my way in an effort to hold open the door. His timing was bad as I was half way through doorway and he really was simply acting as an obstacle. Of course this being central New York the man and his wife who prompted him to "help" is overly friendly. I politely ask that he move aside. I look at him and then his wife sitting at a nearby table. I am screwed. I have encountered Mr. & Mrs. Too Friendly and Eager to Help. I take my dirty clothes to the most distant machine and I am asked "Can I help you put the laundry in the machine?" I politely say "no", being sure to use a neutral tone and not respond with a thank you. I proceed to load the machine and I am then asked "May I help you put the money in the coin slot?" Again I reply with a flat no with the thank you absent. This exchange of questions plays out not just once but twice as I used two washing machines. I do my level best to ignore the couple who watched me like hawks hunting while riding the thermal winds. So much for a relaxing hour. As expected as the machines finish the wash cycle I am subjected to the duplicated offers of help. "Do I need help with the laundry cart? Do I need help loading the dryer? Do I need help putting the coins in the slot? Do I need help folding my clothes? Do I need help getting to the car? Do I need help with the doors?" Each and every answer was met with a simple no. No was the only word I spoke. At no point did they get the obvious message. I do not need nor do I want help. I do not want to engage and by gosh they were desperate to engage.

I suspect every person with a disability has been accosted by such do gooders. Such do gooders are not being helpful at all. In fact they have no interest in helping. What such do gooders are really doing is asserting their social and physical superiority. These social interactions are tiresome. Do not misunderstand me. I do not mind helping others and once in a while I appreciate some help. But the help I accept is based on equality and a sincere offer. I often hold doors open when it is raining. I appreciate it when a person  offers to close my car door on a rainy day. I was not being offered help at the laundromat. The help the couple wanted to deliver came with certain expectations. Help was based on the assumption I was not competent. I was a dependent and inferior human being in need of charity.  Once help was accepted my life was an open book for them to question. I have had this experience thousands of times and in every state of the nation. It pissed me off 38 years ago when I was first paralyzed and it pisses me off today. The only difference is I have the social skills to cut people off from asking all the intrusive and rude questions they are so eager to ask. Believe me, this couple was desperate to learn facts they would not dream of asking a person who did not use a wheelchair.

The exchange described above made me realize the hardest part of living in the Syracuse area is getting accustom to interacting with overly friendly people. I am a New York City kind of guy. I do my best to never make eye contact. I move fast and keep my eyes directed forward and down. I do not stop if humanly possible. I am a point A to point B kind of person. I am gruff and quick to cut someone off. When going up a curb cut I pick up a lot of speed and assume the person standing in my way is going to move once they get the idea I am not even thinking about slowing down. News flash to bipedal readers: lateral movement using a wheelchair is not possible. None of this goes over in certain areas of Syracuse. I cannot make it across campus with my lab Kate without an undergraduate saying something to me about the dog she or he left behind. To not engage in a brief conversation would be deemed rude. At Wegmans. the best super market in the world, employees and customers are routinely nice. I need to move much slower than I want to duplicate a typical bipedal pace. When I eat out at a restaurant I am usually asked "Where would you like to sit?" In New York City when I go a restaurant I am directed to the cripple table. The one table, usually the worst table in the house, is where all wheelchair users sit. This is not subtle and more than once I have left a New York City restaurant in disgust.

The above may sound like minor social differences but they are not. The cultural mind set in Central New York is different. I have to think differently every day. This has been by far the hardest adjustment to living out side the New York City bubble. Truth be told I miss New York City a lot. I want to be an anonymous human being in a crowded deli like Zabars; elbows out and parrying with little old ladies who use shopping carts as weapons. I want good rye bread still hot from the oven. I want New York City pizza. I want to wonder around the American Museum of Natural and Metropolitan Museum of Art. I want to ride my bike down the West Side bike trail. I want to people watch on 5th avenue as masters of the universe speed by with a cell phone surgically attached to their ear--the men in expensive business suits and women in power heels and skirts. I want to use the reading room at Columbia University Butler library. I want the hard edge of life. I like that toughness. Raw emotion instead of formulaic politeness. Ah, the thoughts that pass through your mind on a Sunday when you are vacuuming and mopping the kitchen floor and bathroom.  Truth be told: I lead a solitary life I never expected and I often think of the title of Harriett McBryde Johnson's wonderful memoir Too Late to Die Young. I never imagined the life I have led and look at the sunrise and wonder daily how the hell did I end up here. Life is indeed an eternal mystery.