In the 1980s, during the summer, I was an instructor for State University of New York College at Cortland for their 2 week Outdoor Practicum a course required for all Recreation and Leisure Studies majors. The students stayed at Camp Huntington on Raquette Lake in the Adirondacks which is owned by the College. During the first week students were taught outdoor skills they would use the following week. When the instruction was finished students were placed into groups of 8 to 10, assigned a staff member and then taken on a 6 day wilderness experience where they used the skills they had learned. Travel was almost always by canoe, portaging between lakes.
One summer I had a young woman assigned to my group who was legally blind. Prior to our trip she and I met privately to discuss what her expectations were for the experience. I had noticed while we were in camp she could be very defensive and abrasive at times when others tried to assist her. I felt she failed to grasp that they were only trying to help. She was very upfront with me about being allowed to do things herself. We agreed that I would not step in to help unless she asked for assistance. In return, she promised to do whatever I asked of her immediately and without hesitation. There were some potentially dangerous pitfalls on the route where immediate compliance might be necessary for safety.
The trip we devised would incorporate an opportunity for her to use as many of her senses as possible. We climbed down to Raquette Falls so she could feel the spray from the rapids on her face and listen to the roar of the water. We climbed a mountain called Ampersand near Middle Saranac Lake. The climb is very demanding and lasted several hours even for able-bodied individuals. The trip proved to be a great success and I remember to this day her telling me on the summit of Ampersand, “Now I know I can anything if I put my mind to it.”
The group on the top of Ampersand
How ironic that I now find myself in the same situation with people often offering to help me do whatever it is I’m trying to do. It’s been my observation almost everyone’s gestures are well intended. Most want to convey their empathy, but sometimes I have to remind myself of that. They don’t realize their effort could be misinterpreted as, “I don’t think you can do things for yourself”; for example, when a waitress asks my wife what I would like to order, implying I am totally incapacitated by my disability.
When I talk to a group I always drop a piece of paper on the floor. Ninety-nine percent of the time someone moves to pick it up for me. My wife usually intercedes to stop them. When I’m ready, I pick it up using my paper-pick-up tool. I drop a bottle of soda, a piece of a jigsaw puzzle, a book and one by one pick them up; in public schools the audience usually applauds. I tell them these are not tricks but rather ways that I have developed to function independently. I like to say disability does not mean inability. People need to understand that members of the disabled community are not totally helpless. And members of the disabled community need to remember people offering to help only have the best of intentions. So remember to tell people, “If I need help I’ll ask.”
Tags: ability, attitude, control, living, quadriplegic, wheelchair
Behavior, Community Inclusion, Disability, Education, Living with a Disability, Observation | Rich Fabend | 
March 22, 2011 1:35 pm | 
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Sitting in my shoes
I had just finished speaking to a class of elementary students and was leaving the school when a young child came up to me and said “It must be really cool being in that chair”. I was at a wedding reception once when a middle age woman said she thought the chair was pretty neat. She obviously had had too much to drink so I ignored her remark. I know an institution of higher learning that has students spend a day in a manual chair in order to get some sense of what it is like to be so confined. An organization I belonged to had a fundraising dinner to get money to purchase handcycles. When I arrived children and adults were riding handcycles in the street laughing and fooling around. When they hit the curb they just stood up and moved the bike. I went berserk. I dropped off the board of directors the next day. A psychiatrist I was seeing after my accident said to me once he wished he could trade places with me for a month. He believed he could gain an understanding of what it is like to be in a wheelchair. I know many people feel awkward around individuals with disabilities, but come-on, except for the elementary student, what were the others thinking? If you know your time in the chair is limited there is no way you can understand what it is like. How can an able-bodied person ever understand what it is really like to be disabled?
Living with a disability is not cool, nor is it a game that can played at. It can’t be understood by spending a few hours or a few days in a wheelchair. You must live it to truly understand it. How do I explain to someone the overpowering feeling I get to move my legs? How do I convey the “impulse- like” electrical charges running down my legs telling me they want to move? I had my son cross my legs once when this was going on but it made no difference. How do you explain this to anyone when you are not supposed to have any feeling below your arms; or that I feel so cold most of the time that I wear a knit hat in my house? I can’t even explain that to myself. One of the worst times I experienced was one night, (that’s when my bogymen come out) when the bed motor that raises my torso was not working. I woke up early one morning and had to lie in bed for 5 hours waiting for morning not being able to move or access the things on my hospital table. I just about went crazy. We live in a different world that no one can fathom unless they live there too. Maybe I’m being too harsh, but this is my perception.
It’s estimated that approximately 10, 000 individuals suffer permanent paralysis from spinal cord injuries (SCI) every year in the United States. While most are ordinary citizens sometimes it happens to well-known celebrities like Christopher Reeve. Reeve, a famous actor, was probably best known for his role as Superman in a number of movies in the late 1970’s. Reeve’s fall from a horse in 1995 left him a quadriplegic. As an activist for SCI he brought much attention to this condition. He died in October 2004.
Christopher Reeve and I have several things in common besides quadriplegia. Although uncommon we, both had very little atrophy as a result of our paralysis. In the 12 years since my own accident I have lost only three quarters of an inch off my calf muscles. Another thing we had in common is that neither of us had ever dreams with ourself in a wheelchair. The only exception for me was one night, after a very nerve-racking out of control situation during the day that really scared me. Excluding that single time, I live in two worlds; the reality world where I am physically confined to my wheelchair and the dream world where I am free of any constraints. Many mornings I wake with pleasant memories from my night’s sleep. The dreams are extremely vivid and realistic, filled with physical activities rooted in my pre-accident life. I am often running through open woods pursuing a turkey I hear in the distance. (I am an avid hunter) At times I’m riding my bike at a frantic pace feeling the wind on my face. Other times I am swimming in the Hudson River where I grew up as a child. Recently, I dreamed I was lost in a large construction site which was more like a maze than anything else. Frantically I tried to get out; running, jumping over obstacles, climbing and even lowering myself over walls and then dropping to the ground. My dreams seem so realistic that often I am disappointed when I have to get up and “change” worlds.
Reality
As I’ve grown older I have begun to think more frequently about dying. I don’t consider myself a religious person but rather more of a spiritualist. For a Christmas gift I received a CD of Christmas music by Annie Lenox. Besides the moving song Universal Child I found a wonderful explanation of her personal religious beliefs in the jacket lining. She wrote:
“While I don’t personally subscribe to any specific religion, I do believe that the heart of all religious faith has to be rooted in love and compassion, otherwise it serves no purpose.
For me, the word ‘Christ’ represents the sacred and mysterious divinity of life… this could just as easily be ‘Buddha’ or ‘Allah’.
The words from the Bible, the Torah, or the Koran are too often misused to justify viewpoints that oppress defy or create discord rather than engendering empathy, harmony and respect for each other, accepting and embracing our differences, whilst realizing that we are all human with the same strength and weaknesses.”
Friday night I had another very vivid and physically active dream. I was running and climbing in a beautiful fall woods. I was with two neighbors from where I used to live. I could hear the leaves crunching under our feet as we ascended the hill. Periodically, we would stop at a clearing in the woods to look at the beautiful vista that was open before us. My friends were much younger than I was and so I was constantly trying to catch up. When I did, we would stop, talk, drink some water and then we were off again. After a while I became aware of a buzzing noise which seemed very out of place. I realized it was my wife’s alarm clock; and slowly and very reluctantly I began to return to my other world. I have no personal belief in heaven or hell but I spent the better part of the morning thinking how wonderful it would be if the process of death could just be the Crossing Over from my reality world to my dream world.
Dream World
Going..
When I woke up this morning at a quarter of six the temperature outside was 27°. Even though it is May 10th you have to expect the possibility of this kind of temperature when you live in northern New York. My nurse arrived around six and the day began. I was ready to roll a little after eight o’clock but was delayed because of a problem my nurse had loading my shotgun. Bundled up in camouflage, my wife and I finally headed out of the house. I’m fortunate to be able to hunt across the street on a large area of abandoned farm land. I motored down the driveway, across a field, down an abandoned road and drove into the field to the place where I was going to hunt. At the edge of the field I back into an area of small trees and brush. One must blend in with the surroundings because turkeys have excellent vision and can spot anything out of place. Marge helped me with some final adjustments, covered my head with camouflage netting and left. Fifteen or twenty minutes after she left intermittently I began calling the turkeys. Turkeys call back and forth to locate each other during the mating season. Although it was cold with a brisk wind, it was a beautiful sun shiny day. Back in the hedgerow there was little wind and it wasn’t long before I could feel the warm rays of sun on my face.
going...
After a while I became aware of a bird jumping around from branch to branch. A minute or two later it landed on my shotgun barrel and stayed for about 30 seconds. It was Black-capped Chickadee. They are cute and entertaining little birds. I glanced at its feet gripping the barrel of the shotgun. How can anything be so delicate? Even though we can have brutal winters, Chickadees are year-round residents. After it flew off I called a couple more times. Slowly my eyes began to close and I nodded off in the warm sunshine. When I awoke again the grass in the field was bending in the wind, as were the trees and bushes directly across from me, every shade of green rocking in the wind. I heard the raucous call of a crow. It kept repeating and each time after it was done I listened intensely for a gobble that never came. Often in the early spring during the mating season male turkeys will gobble when crows are calling. Again I became aware of movement in the bushes around me. This time it was a pair of Wood Thrushes who were also involved with the spring mating ritual. They have one of the most beautiful calls of the early spring morning but these two had other things on their mind.
gone
Sitting in the warm sunshine calling, nodding and watching, the morning passed quickly. I soon heard my wife’s voice as she arrived to walk me home. The hunting time ends at noon each day and Marge insists on walking me back home. Tomorrow is another day. Oh, by the way, I didn’t see or hear any turkeys, but it was only noon and I had already had a quality day. At one point during my recovery I never thought I would enjoy a day like this again.
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