Snow covers the ground like a thick, white blanket and there is a chill in the air as my train arrives in Concord, MA where I am to meet Dr. Fred Fay. I am greeted warmly at the station by his wife. Trish, who is going to drive me to their home. Trish takes me for a scenic tour through the wooded countryside and along the historic Walden Pond. The pond is covered by a shiny layer of ice and the trees are frosted with snow. It strikes me that this is a place where history has been made and continues to be made today. Like the writer Henry David Thoreau, who a century ago retired to the isolation of Walden Pond to write and reflect on life; Dr. Fay has come here to find himself and share his findings with the world.
When we reach the home, I enter into a room that looks something like a blend of a hospital room and NASA control. In the middle of the room there is a bed equipped with levers, remote controls, a thermostat, a humidifier, a fan, a watch, and a two-line portable head set phone. There are computers and monitors, along with various other equipment nearby.
In this room is Dr. Fred Fay: psychologist, community organizer, and political activist. Dr. Fay is changing the way people think and the way government legislates. And he’s doing it from his bed via fax, phone, mail, and the internet.
Dr. Fay has co-founded over a dozen different organizations including: The Washington Architectural Barriers Project, the Boston Center for Independent Living, the American Coalition of Citizens with disabilities, and the newly-formed American Association of People with Disabilities.
He has received numerous awards such as the Pike Prize and the U.S. Jaycees Ten Outstanding Young Americans award, an honor he shares with past recipients such as Presidents Kennedy, Nixon, Ford, and Clinton as well as the Reverend Jesse Jackson, and Vice President Al Gore.
In 1997 he won the prestigious Henry B. Betts Award which is presented annually “to honor an individual who has greatly improved the quality of life for people with physical disabilities.” I was delighted to have the opportunity to meet with Dr. Fay in person. Although he participates in various conferences and organizations throughout the world by phone and video conferencing, he usually meets his colleagues face to face only when they have the chance to come and visit him in Concord.
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Paralyzed at the age of 16 after a trapeze accident in the backyard of his home, Dr. Fred Fay went on to get his Doctorate in Psychology at the University of Illinois and to champion the rights of people with disabilities. In the late 70’s he was diagnosed with a spinal cord cyst, a result of his injury, which prohibited him from sitting upright. Forced to remain in a hospital bed for many years, in 1987 he developed his “power wheel-bed”. This bed gave Dr. Fay everything he needed to get around his house and to act as his communication center to the world.
In recent years he has focused on shaping federal disability policies. In 1991-92, as National Chair of Disability Rights in Voter Empowerment. Dr. Fay worked with the staffs of major presidential candidates in developing and distributing disability position papers. He is Co-Chair of the Ad Hoc Committee on Health Care Reform and Disability and serves on the Board of Directors of several state and national business organizations.
Dr. Fay currently chairs the Democratic National Committee’s Disability Advisory Committee and during the 1996 election, chaired the disability constituency for the Clinton/Gore campaign. He is also a founding board member of Justice For All, an organization formed to defend and advance disability rights and programs in Congress, where he chairs the Justice For All Telecommunications Network.
Dr. Fay and Trish met over a dozen years ago in the hospital, when she was taking care of her dying husband. They started talking as friends for mutual support and in time, their relationship grew into something more. Between them they have three grown children. Dr. Fay has one son from a previous marriage and Trish has two children from her first marriage. Trish owns and manages the local community restaurant.
As I had heard, Dr. Fay was intelligent, gregarious. and a great talker.
CC: What are your most commonly asked questions?
FF: People generally have three questions for me. First is, “How did you do it?” The second one is “Can it be cured?” The third one comes after they have known me for a while. They want to know if I enjoy sex?
I broke my neck in a fall from a trapeze that was in my backyard. I was doing a “skin-the-cat,” a move where you hang by your hands and swing your legs through. I remember my foot hitting the bar on the third time. I said a four-letter word as I fell to the ground. I woke up the next morning with a C-6 and 7 spinal cord injury. The two vertebrae had been broken. The cord itself was not cut, but there was enough bruising to cause the paralysis. I spent five weeks at the National Institute of Health, where they did a laminectomy and a fusion of the two vertebra. I was in acute care there. I did some occupational therapy. I learned how to do transfers in physical therapy. With long arm crutches and legs braces, I learned how to get around on crutches. I could get from the floor to a standing position with my crutches. I learned to go upstairs backward with the crutches. I learned how to get into the driver seat of the car with my crutches. I used to enjoy going shooting with my 22-rifle. I developed a splint that wraps around my wrist so that I can pull the trigger without any dexterity in my finger. I could pull my arm back.
I remember even before rehab I met another quadriplegic, Larry Kegan, who became my roommate for a few days. As a role model, he was incredibly helpful to me. I was still in traction with pins in my head to keep it extended while they flipped me over every couple of hours. I had no idea what my potential was. This fellow, who was my roommate, was driving a hand-controlled car, he was going to college and was dating, he was going out with the guys on Friday nights and was singing in a band. We talked for two or three hours about his many areas of interest and at the end of his conversation he said to me “you know that you will never walk again?” I responded yes and tried to change the subject. He kept coming back to that. At the time it seemed almost brutal. After he left the room I remember crying over the loss of the use of my legs. In that grieving I was experiencing what Elizabeth Cooper Ross speaks of in her theory on the five stages: denial, anger, depression, bargaining, and acceptance. You go through this with all major losses. I got over my denial quickly. The anger was very brief. There was a stereo typing associated with me that I must have gone through a lot of depression but in reality it wasn’t that way.
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Since then I realized that when I was able-bodied in the course of a single day I might do ten thousand different movements and now there were nine thousand eight hundred I couldn’t do any longer. But there were still a lot I could do. It is the old adage; do you look at your glass as half empty or half full. I see my glass as almost completely full. It is a matter of choice as to what you choose to focus on.
Some people get stuck on their disability and don’t get past it. The vast majority of people with disabilities begin to see what other people with disabilities are accomplishing and choose to get on with their life. They choose to view it as an inconvenience and not get overwhelmed by it. I went to physical therapy and began lifting weights so that I could get enough upper body strength to lift myself and go off to college and transfer myself from one point to another.
When I went to the University of Illinois, which is one of the two accessible colleges East of the Mississippi in 1962, their success story was someone would walk in with crutches and leave in a wheelchair. It was kind of counter intuitive. It is very slow going with crutches, it can take me ten minutes to get across the room. To get to and from classes can take so long that it is totally impractical. Whereas in the wheelchair I had both hands free and I could carry the books on the side of the chair. It was much faster getting around. At the University of Illinois every dormitory and fraternity and sorority had level entrances or ramps with wide doors, accessible bathrooms, etc. I went to the university for four and a half years as an undergraduate. When we got back from the Warm Springs area and to the University of Illinois, in the Washington area, there was no such peer support group to provide peer counseling. There wasn’t a spinal cord injury center with a nucleus. So one of the first things I did…was to start this group called Opening Doors. We sent out business cards to three thousand doctors in the Washington area saying if you have a newly injured person have them call this phone number. We would match up by disability and by sex.
CC: When did you start logging on to the Internet?
FF: When I was at IBM, Arpanet, the predecessor to the Internet, started with the contract to the DMV. I started with IBM in the summer of 1966 to help manage the program information center. We were also helping to evaluate three different time share systems. A time sharing system was a computer that would let you connect with other computers over phone lines. I had a free standing unit that had a computer terminal built into it. There was no monitor but there was a printer, you could send your messages out over phone wires. When you got a message back it would print out. It was one of the first steps toward the Internet.
There were thirty-two sights hooked into this one computer and that was a huge network in those days. I started using a multiprocessing system then. This was prior to the Internet. I got an Apple II in 1977. Bulletin boards started springing up. Anyone could dial in from around the world and access the computer bulletin board. You gave them your password and you could download files, send messages, etc. It was pretty rudimentary. It started out at about 75 b.p.s.. it was just incredibly slow. In the late 70’s we were doing some work at Tufts University. I was director of Research in the Department of Rehabilitation Medicine. One of the programs I managed was teaching people to use technology to benefit themselves.
I remember telling my parents back in the 60’s that someday their telephone, television, and electric type writer would all become one. The technology is so incredibly empowering for someone flat on their back, to be able to potentially talk to millions of people around the world.
CC: So with all this technology available you’ve decided to just stay in bed?
FF: (Laughs) Let me give you the medical description here. In 1979 I had a recurrence of a spinal cord cyst. A bubble inside the spinal cord. It reached the point where I had trouble swallowing and breathing. I also developed circulatory problems, one hand was thirty degrees hotter than the other. I was having major health problems. But if I stayed flat, the cyst progressed extremely slowly, I have known a lot of people who have developed cysts over the last five or ten years and they are all dead now. I have had this one for thirty years now.
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CC: So it’s best if you remain horizontal?
FF: Yes. The hydrodynamics are pretty complicated. Inside your head between your brain and your skull is cerebral spinal fluid. Just like your blood circulates through your body, the spinal fluid circulates through your brain and back down to the base of your spine and the way the shunt works is it goes into the base of the cyst and drains into my peritoneal cavity.
CC: Can you turn upside down?
FF: If I was to hang upside down there would be fluid pressure within my head. On the other hand sitting up or being elevated creates trouble too. I am best off horizontal.
They are finding with the MRI that the majority of people with spinal cord injuries also have cysts. In the majority they don’t extend upward. They don’t progress. They just sit there. The cyst starts when there is an injury to the spine. There are microscopic blood vessels within the spinal cord. When there is trauma, there is bleeding within the cord. That clotting eventually gets washed away by the system. But where that blood clot was leaves a tiny cavity. Increased blood pressure due to certain movements, sneezing, coughing and types of exercise can force this little cavity to expand upward. It is sort of like a balloon..
In my case it started out as a tiny spot in my C-6 and it now goes two feet from the base of my spine to the base of my neck. But the shunt has been draining off the excess fluid so that it doesn’t create problems. A lot of doctors don’t know how to diagnose this situation. therefore a lot of people die within a few years. I have been incredibly lucky.
CC: So that’s when you developed your bed?
FF: After I developed the cyst, I was in a hospital bed, but I kept thinking here has to be some way to become mobile again. I ended up taking a thirty year old E&J stretcher and got a sheet of plywood to hold the mattress. I also have an alternating pressure pad which makes it feel as though I am getting a continual mas sage. The bubbles go up and down every minute or so. I have a Balkan frame from a hospital bed that I trimmed down to hold the two line portable, cordless phone. The remote control for my fan, a remote control for the speaker phone, it also dials twenty numbers in memory. I have a fish eye mirror to see whatever I run into. (Laughs) The two trapeze loops for bed mobility, my dad’s watch, a clip to hold papers, a temperature and humidity guide. Up to forty-eight functions can be controlled with this stuff. There are some functions on my computer program. The way I use a keyboard is by looking through a mirror at the keyboard which becomes backwards. I did hear of some people in Australia that have developed a mirror that doesn’t reverse the images. I would love to find one of those mirrors.
CC: I had heard of these mirrors being used to create an optical illusion at Knott’s Berry Farm
FF: I doubt there has been much ergonomic study in the area of people using the Internet [from a prone position]. There is a lot of work to be done.
CC: There is a company called Ergopod that has marketed the first ergonomically accessible computer adaptation device. It has wheels with a monitor set up. Supposedly people in bed can use it. I have not seen a version yet.
FF: As the flat screens become more available you wouldn’t have to have that huge heavy shelf.
CC: ViewSonic has a new large screen monitor that. is light weight and thin.
FF: I would like to see that.
CC: Do you have remote control products?
FF: I have some software that will perform a whole sequence of events like start the coffee, turn on the lights, etc. There is a free standing unit that can plug into the serial board of your computer, you can program it all in then you detach it from the computer and plug it into the wall and it will execute all these commands at the appropriate time. There is a thing called a sundown er that senses the ambient light and at a certain darkness level it senses it is time to close the curtains. I have a catalog with approximately one hundred pages of remote control items.
CC: So how fast can your bed go?
FF: (Laughs) 8.3 mph according to the literature. The original motors weren’t strong enough to power the wheels turning. I burned out a couple of motors. The strongest motor I could find was the 21st Century. A high powered wheel chair motor. I never have actually gone 8.3 mph, but I have put a hole in a couple of doors by mistake. (Laughs) I had a kid sitting up here once who decided to ride it himself.
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CC: Trish mentioned your ride down the road at a convention. What happened there?
FF: It was pouring rain, I am in the middle of the road in my bed, an occasional car would come by and my friend, who had driven me up there, was running along side me, telling me to slow up. He was worried about what the neighbors were going to think, a bed driving down the street with a guy running after it in the pouring rain with cars coming.
CC: Were you yelling “leave me alone!”
FF: (Laughs) You can imagine. It was pretty funny.
CC: So you just picked a day that it might rain to go out?
TF: (Laughs) When they decided to go I said I can’t watch this. I thought for sure he was going to get run over. So Pat (a friend of the family) and I are back at the house and she said look at them, PhD’s and no sense whatsoever. Fred with all his electrical stuff in the water and the sheets were totally soaked. It caused him a lot of stress and pain afterwards and probably progressed his cyst a little afterward. It was a huge hassle. His friend now has a van that can transport him easier. The less jostling the better.
FF: The spinal fluid sloshing around is not good. It is really a mechanical and hydrodynamic disorder. 1 have been very careful for the last seventeen years because I really was experiencing some difficulties. I now have managed to avoid some of them.
CC: Do you do much traveling?
FF: I travel either via the Internet or through my imagination. There is some interesting research where they looked at brain activity when you actually experience something and compared it to people imagining something. The brains responses were very similar. In our imagination we can come very close to the real thing. Have you seen the Star Trek Holodeck? It is a huge room that can be turned into any type of room and it is filled with holographic people. The gap between the real world and the imagination is closing. The potential for virtual reality for education is great. Think about simulating surgery so that you can actually practice. Rather than doing your first surgery on a human you could perform it in virtual reality in a way that seems like you are cutting the skull open in an actual surgery. Another example would be the military uses, such as flight training. They are very realistic. My nephew’s tank crew plays war games on virtual reality and he says it is the same as when you go out into the dessert because inside the tank you aren’t looking through a window. This would be incredibly liberating for people with disabilities. Even though you may never go anywhere you can experience different worlds. I have yet to get my first virtual reality system. I would love to have one.
CC: I heard Bill White, the White House Liaison, phones you often. What do you discuss with them?
FF: We discuss all types of issues ranging from Roosevelt in a wheelchair at the Memorial getting that law through so that the Memorial gets properly amend ed. Million and millions of kids in the country will see that monument and will benefit from knowing that our greatest president, the guy who lead us through the great Depression and World War II, was great in a wheelchair. (We discuss) the whole range of disability issues. We have over a million people with mental disabilities that are in a state nursing home, many of them against their will. Many who are strapped in their beds. Others are drugged into silence. For the same dollars or less the same people could be living in a federally assisted com unity. There are a variety of alternatives for each specific disability, but this for profit nursing home chain. treats them like they are inanimate objects. It creates a very depressing and negative environment for people with a disability. I don’t know if you have spent much time in nursing homes, but I worked in one for nine months. It is an absolutely horrendous place. Way back in the early 70’s they tried a new concept of a personal care system, where the person with a disability often ended up in a nursing home if they didn’t have family who would care for them. We convinced Medicaid to create this new category of health care worker, on an experimental basis, called a personal care assistant. With that they can live in their own apartment and use the same amount of money to hire an attendant. It was incredibly liberating to a lot of folks who thought they were going to spend their life in a nursing home. Sever al of these people have actually gone on to run other independent living centers here in Massachusetts. We are working on getting a National P.C.A. program in place. Over thirty states have used the Medicaid model that was used here in Boston. There are still an incredible number of people who are institutionalized.
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CC: What are your thoughts on biotechnology?
FF: One of the fascinating things for me, looking at biotech, is that in the not so far future, people will get a report card on their DNA an their individual makeup. that will tell them, for example, that they have a 22% chance of developing Parkinson’s Disease, or a 35% chance of developing breast cancer, or a 10% chance of developing something else. It will be interesting to see how that report card gets used. Right now insurance companies are using any information they can get hold of to discriminate against people with disabilities. I believe our whole health insurance industry within America is a scam. You pay premiums for years when you are able bodied, then when you develop a major ill ness very your premiums go up as much as $50,000. Or you lose the insurance. Able bodied people don’t like to think about the possibility of a disability.. Many are frightened by the unknown. How people respond is important. On the flip side of the “Report Card” is the thought that people might use it as a genocide, as Dr. Kevorkian has proposed, to get rid of all the “defective useless eaters”. So many of the people that Dr. Kevorkian has chosen to terminate are people with Multiple Sclerosis, people who have not had the benefit of any peer counseling, and are locked into societies narrow stereotypes about disabilities and low expectations. The most controversial issue we got into on our Jus tice For All e-mail network was with a group called Not Dead Yet. (Regarding) the right to die laws: I think a per son with a disability should have the freedom to decide for themselves their fate. I am very concerned with a doctors deciding for you. In Germany they went through this with people who were “mentally defective”, the same negative attitude toward people with disabilities could take hold in America If it is the individual with the disability who has really had an opportunity to benefit from peer counseling, and still chooses to kill themselves, then it should be their privilege. The Mary land Trauma Center had a Chief of Trauma that was turning off the machines on quadriplegics after several weeks. His argument was that he talked to people who were quadriplegic and a lot of them didn’t want to live. They were suicidal. He later added that the Iron Lungs were in short supply. So based solely upon talking to other people in his acute trauma center he was deciding the fate of others by terminating their life support. The vast majority of quadriplegics, after a few years, come to terms with it and get on with their life, they are pretty active, they marry and have kids. There was a survey in New Mobility that asked if there were a cure available would you take it and most of them said no. It is an inconvenience at times but it becomes a part of who you are. I think the decision making needs to be up to the individual. Other family members have all types of incentives including bills, estates, etc. There are a whole lot of wrong rea sons that people might wish to see a relative or a patient terminated. The Right to Life and the Right to Die: Pro Choice, Pro-Abortion. A lot of conflicts. People with disabilities object too able-bodied people who terminate a fetus because they have a disability. There is a whole controversy in the deaf community about cochlear implants. I have heard of people in the deaf community who have denied the child the opportunity to have an implant. I can see both sides of the story. My son had a head injury that caused partial deafness in one ear. They attempted surgery to relieve the pressure from the excess fluid. I wanted him to be able to hear, I wanted him to have the surgery. Yet I understand because I am proud of who I am and part of me is the disability. I would rather be me than anyone I know. There are a lot of different sides to many of these issues.
CC: What else have you been involved in recently?
FF: Since January of 1995 I have worked for a lot of different programs that we are now in jeopardy of losing as they are under attack by Senator Gorton who decided to try to cut all the money for Vocational Rehabilitation, Independent Living Right. Individuals with Disabilities Education Act. Through a series of efforts we got that turned around.
CC: What do you do when you have spare time?
FF: I have spent some time researching Genealogy, one day I found forty-eight relatives on the Internet. I also spend a lot of time counseling people on their computer work and helping them over the phone. I have played in an international Scrabble tournament. There are all sorts of sophisticated scrabble strategies, whether you open up the board or close it down to limit your opponent. During my sons’ infant years I was working at IBM, I missed him picking up objects for the first time and sitting up for the first time and things like that. My neighbor does some secretarial work for me. She got pregnant and had a baby that I now am watching grow up. I got him his first software. He is one of the youngest kids known to get on the Internet.
CC: You and Trish seem very happy, how long have you been together?
FF: About fifteen years. It’s ironic my physical condition is getting worse, but the last ten years of my life I’ve had more independence and happiness than ever before.
by Chet Cooper and Greg Logan
