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I acquired a spinal cord injury in 1986, rendering me quadriplegic (C5). I subsequently underwent seven months of physical and occupational therapy at the Rehabilitation Institute of Chicago (RIC Link). For the first three months, I could not move any muscles below my neck voluntarily. Gradually, I became able to move my left shoulder and arm. As I regained control over some muscles, I was required to exercise them five days per week. My right shoulder and arm regained partial movement more slowly than the left side, and I had not been exercising them very long before my release from RIC. I remember my physical therapist expressing her concern that after my discharge I might favor using my left arm for feeding and other activities and neglect my right arm. I soon realized that this was occurring, so I decided to begin a home exercise program that would strengthen both shoulders and both arms.
First, I had my personal assistant strap a 3-pound weight to my right wrist. Then, I extended my arm straight out from my body. I began by lifting straight up to the point of exertion. The next day, my shoulder was quite sore. Within three days, I couldn't sleep well because the pain had increased enough to trigger autonomic dysreflexia and cold sweats. I went to an orthopedic doctor who quickly diagnosed my condition as bursitis. After I received a cortisone injection, I chose not to exercise any more for fear of once again developing bursitis. As a result, I experienced a period of sedentary life (10 years without exercising). I learned, much later, that injury during exercise is a common barrier to health promotion for people with disabilities, causing them to choose to stop exercising.
In 1999, I decided that I should try, again, to establish an exercise program, but this time I would not push myself as hard. I began by extending my arms and rolling my shoulders without using any weights. The next day my shoulders were slightly sore, but it was a good feeling. This was a sensation I had not felt in 10 years. The following day the soreness was nearly gone, and I could actually tell that I felt slightly stronger. Slowly, I began to augment my exercise program with wrist weights, carefully increasing the weight and repetitions as my strength and endurance improved. My previous encounter with exercise had been quite negative, but now I look forward to feeling my heart pump fast. It's a sensation that I had almost forgotten. Because my spinal cord injury has reduced the number of sensations I can experience, I wish to engage in every one that I can. Today I can curl 10 pounds for 3-4 sets of 10 repetitions with my left arm and 5 pounds for 3-4 sets of 10 to 15 repetitions with my right arm. This usually keeps me engaged in 30 minutes of vigorous exercise two to three days per week.
Due to the nature of my spinal cord injury I do not perspire, so I make sure to increase my fluid intake while exercising. It is also true that my SCI inhibits my ability to burn excess calories. With this in mind, I decided to reduce my caloric intake by cutting down on sweets and high-fat foods and by drinking water instead of soda.
In order to take my exercise program to the next level, I visited my local gym (one of the largest chains in the United States). I spoke with the exercise trainer, who was willing to help me exercise. He did not have the appropriate knowledge about my disability to help me develop an exercise program suited to meet my specific needs. He told me to look around and see if there were any machines that I thought I could use. He asked if I could transfer out of my chair because only one machine was accessible from a wheelchair, but I assured him this was not feasible.
I asked about aerobic exercise and he indicated that there were no programs available. He suggested going from machine to machine without taking a break in between, which would be difficult since only one machine was suitable for my use. The only machine I could use was a curl machine with a pulley system that could be pulled up from floor level. It had a horseshoe handle that I could put my hand through, but since I could not grasp it with my fingers it would slide up to my elbow when I curled it. Even if I could have used it, the 15-pound minimum setting was about 10 pounds too heavy for my right arm and 5 pounds too heavy for my left. There were exercise bicycles available, but they were located upon a riser that was not accessible. I motored through the facility and discovered that the aisles were quite wide and maneuvering around machines was relatively easy (while there were few people using them). The facility was equipped with accessible showers, bathrooms and saunas. But these would be of little importance to me if I could not engage in an adequate exercise program.
However, at least this gym was willing to try and help me to the best of its ability. This experience is in stark contrast to an encounter I had with another local fitness center. I recently contacted a nearby YMCA (YMCA Link) and inquired about its physical training programs. I asked the manager if she would be able to structure an exercise program around the needs of someone with a spinal cord injury. She quickly replied that a person with a spinal cord injury would need to obtain a prescription from his or her doctor and present it to her before any accommodations would be made! By requiring people with disabilities to acquire a prescription to exercise, this YMCA has effectively 'medicalized' disability instead of simply providing access to their facility and adapting programs to enhance participation. Furthermore, she mentioned that people with disabilities would be required to sign a waiver that would relieve the YMCA of any liability concerning complications that may arise during the time that the person is involved in its program. This is clearly an arbitrary decision being made by the facility, and it violates the rights of people with disabilities in terms of equal access to public programs. Or perhaps the YMCA's idea of progressive health promotion for people with disabilities is to send them 'jumping through hoops'. People with disabilities need and deserve equal access to fitness and recreation programs, but this will only occur when the facilitators of these programs embrace the 'spirit' of the ADA and not just the letter of the law.