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Spinal Cord Injury:
The Quest for Independence



by
Diane P. Wagner, CTRS

Spinal Cord Injury (SCI) could happen at any time to anyone. Since it occurs primarily as a result of a traumatic accident, its onset is dramatic and overwhelming.

SCI victims are usually young, vital people who are in the prime of their lives and in the midst of planning their futures. Fifty years ago persons who acquired SCI died within weeks. Today, due to spectacular advances in medicine and the sheer indomitability of the human spirit, the majority of persons survive SCI. But, they are injured, rehabilitated and discharged into the community to be reintegrated back into our society as persons with

Another decisive factor is whether the spinal cord injury was complete or incomplete. Complete injuries result in total loss of sensation or function starting at the point of injury and down the body. Incomplete injuries result in partial loss of function and sensation. This means that the person will have some strength and use of muscles below the level of injury. In essence, they are only partially paralyzed.

There are approximately 8,000 spinal cord injuries in the United Slates each year. Researchers believe that this number is significantly on the lower end. The total number of persons with

disabilities. Living with this disability is physically demanding, emotionally frustrating and draining and especially financially depleting; yet the majority will live useful, quality lives filled with accomplishments and failures, joys and sorrows. In essence, they are basically normal people who just happen to have a physical impairment that can be an inconvenience but not necessarily a handicap.

Spinal Cord Injury is caused by damage to the spinal cord that results in paralysis to certain parts of the body and corresponding loss of sensation. Paraplegia refers to any level of paralysis occurring from below the arms down. They have complete use of their arms but their legs are paralyzed and their torsos may be paralyzed depending on the place that the spinal chord was injured. Paraplegics usually have the capacity to live alone and/or independently with adaptations with no

Spinal Cord Injury Victim
SCI now living in the U.S. is approximately 250,000. The following characteristics generally describe individuals with SCI; 80 percent male and 20 percent female; average age is 30; median age is 25; and most frequent age is 19. Motor vehicle accidents are the leading cause of SCI at 50 percent, followed by falls at 20 percent, act of violence are 15 percent and sportsrelated injuries are 15 percent. Two-thirds of sports-related injuries are from diving and 90 percent of all sports-related injuries result in quadriplegia. Falls overtake motor vehicle accidents as the leading cause after age 45. Acts of violence and sports cause less injuries as age increases. Overall, slightly more than one-half of all injuries result in quadriplegia. These statistics show that SCI trauma occurs primarily in young men and women (mostly men) who are dynamic, independent people who suddenly find
physical assistance needed. Quadriplegia refers to paralysis from approximately the shoulders down. However, an important distinction for a quadriplegic is, again, the level of spinal cord injury. This predicts whether the individual can use his arms. Quadriplegics will always have some hand paralysis. However, some have various levels of muscle functioning in their arms and shoulders. The key factor is the level of injury or, in other words, where the spinal cord was hurt. themselves paralyzed and learning to deal with a new lifestyle, self image and societal stereotype.

Learning to function with SCI entails months of hard work and tremendous amounts of physical energy. Learning to cope with SCI demands that an individual re-evaluate his or her live plan and self-identity. The initial reaction to SCI is inevitable shock and disbelief. Everett Cobb, a recently injured person with incomplete quadriplegia, discussed his initial emotions after being

Illinois Parks and Recreation                      27                       January/February 1991

injured. "I felt like I was in a movie and I just wanted to get up and leave. I wanted to be able to move so bad," he said.

Persons with SCI actually progress through a loss process. Dr. William Adair, Medical Director of the Midwest Institute for Rehabilitation of Christ Hospital and Medical Center in Oak Lawn, Ill., stresses that the patients' emotions are complicated and introspective. "A part of the person has in a sense died and they must adjust their life goals and sense of self," he said. They are initially shocked, they may then experience denial, anger, bargaining, depression, and hopefully, eventual acceptance. Each person differs in their adjustment process and can experience different stages of adjustment at various times.

Learning to live with a disability is a lengthy and often frustrating process. Unfortunately, the burden of coping is not always caused by a person's own frustration with the disability. Long after an individual with an injury comes to accept himself and becomes self reliant, the lack of societal acceptance and understanding is still felt. The process of learning to live with a disability in our environment is the real challenge. Overcoming societal stereotypes and architectural barriers is a major issue for persons with disabilities today.

In addition, dealing with other persons' feelings of pity, sadness and guilt becomes frustrating and draining. When asked how it felt returning to the community after a SCI, Cobb said, "I feel helpless, sometimes because I can't get around as good as before. But mostly, I hate pity. I don't want people feeling sorry for me."

In essence a person with SCI such as Cobb must not only face the difficulty of mobility and functioning, he must also learn to overcome societal misconceptions. Within the social context he must learn how to put people at ease and make them forget that he is in a wheelchair.

Dr. Adair discussed his feelings about persons with SCI. "I went into rehabilitation to learn how to help with the unique needs of people with disabilities; yet the more I learn about people with disabilities, the more I realize how similar their needs are to the able-bodied population. Ultimately, all have the same desire for dignity and self-worth."

So how should we as individuals, professionals and as a society deal with persons with SCI and disabilities? We can relate to and accept them as normal human beings just like anyone else who has the same individual and personal desires, but have altered physical capacities. We can examine our professional stance regarding recreational services for the disabled. The onset of SCI may interfere with a certain number of recreational activities that a person had enjoyed prior to injury, especially since a large proportion of these activities involved physical performance. Since recreation is a part of everyone's lives in some form, it is also essential in the lives of persons with disabilities.

Wheelchair sports can provide many rewards and continued opportunity for physical activity and competition. Research shows the psychological and physical benefits of recreation for SCI to be immense. Repeat hospitalization decreases and tension and depression are less significant for SCI athletes. In fact, tension, depression and confusion with SCI athletes were even lower than nondisabled. Who is responsible for providing recreational services for individuals with SCI? Traditionally hospitals have sponsored wheelchair sports teams or the teams have supported themselves through fundraising and volunteers. As contributing members of our society, the disabled community has a right to services. At the least, public facilities and programs should be physically accessible. This is the law. It is up to us as individuals and professionals to examine our philosophy and position regarding the disabled.

As we enter the 21st Century, we need to bring our expectations for those with disabilities in line with the realities of their lives. People with SCI are basically people like us who just happen to have a physical impairment that requires greater expenditure of energy for daily life activities. Our mission is to realize this normalcy and accept people with disabilities as people while acknowledging their unique differences and providing adaptations and services.

About the Author
Diane Wagner is the Supervisor of Therapeutic Recreation at the Midwest Institute for Rehabilitation of Christ Hospital and Medical Center. She received her bachelor's degree from Central Michigan University. She is the 1990 President of Therapeutic Recreation Association of Clinical Settings which is a not-for-profit professional association for therapeutic recreation service providers and related professionals. Photo by Brother Vincent Reyes.

Illinois Parks and Recreation                      28                    January/February 1991

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