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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. 

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