Post-Polio Health (ISSN 1066-5331)
Vol. 12, No. 1, Winter 1996
Living with Disability: Approaching Disability as a Life Course - The Theory
Jessica Scheer, PhD, National Rehabilitation Hospital Research Center, Washington, DC
I want to tell you today about a framework I have developed in collaboration with Mark Liborsky, a fellow anthropologist at the Philadelphia Geriatric Center, that may enable you to place your own experience with polio into a cultural context. We developed the framework through several years of in-depth, multiple-interview case studies of polio survivors.
Specifically, we looked at the significance of life-course stages and development tasks within an historical and medical context. We found that decisions about current disability-related issues are infused with broader concerns about personal identity and the fulfillment of personal and cultural expectations; and that early life experiences with disability continue to be important in later life.
Figures I and II illustrate a framework for examining personal experiences and concerns of polio survivors. The bottom line in Figure I, indicates the stages of the polio trajectory: Most of you can easily recount the type of rehabilitation you first received, the period of recovery and functional stability, and then, in many cases, the onset of new disabilities. Some of you experienced the new disabilities as second disabilities; others felt disabled for the very first time.
The axis of Figure I conveys the historic era during which you contracted polio. It serves as a general predictor of the type of rehabilitation you received and the societal attitudes towards polio and disabilities you encountered.
Within this medically oriented historical backdrop and at the intersection of the polio trajectory, some traditions developed among people who had polio about how to behave and how to perceive the world (see Figure 1, below). Also during this time, when disabilities were viewed largely as a medical problem of the individual, traditions developed in rehabilitation centers that were later reinforced in the family and other societal institutions. In those days, people were expected to be good patients – to comply with treatment recommendations and to fit into the mainstream of American life. Hearing "use it or lose it" over and over, those who had polio learned to fight for physical recovery, to exercise in spite of pain, and to generally push themselves to the limit and then push some more.
This effort led polio survivors to a heightened investment in the American work ethic as a way to moderate the social devaluation of people with disabilities. As they achieved self-sufficiency and productivity, they minimized and overcame their disabilities and passed into the mainstream.
Another early polio tradition that affected survivors was the message that they heard from rehabilitation practitioners and society at large to forget their bout with polio: to put the past behind and to move on with their lives.
Like the work ethic, putting the past behind was a broadly shared cultural expectation in the 1930s, '40s and '50s. Returning World War II veterans were told to do it, as were the people who did had devastating experiences during the Great Depression.
Perhaps the psychological process of initially minimizing losses has survival benefits, as it certainly did during the first years of living with polio related disabilities. However, the tradition of putting the painful past behind is not one that lasts a lifetime. in fact, we are now observing the emergence of late-polio traditions: rehabilitation treatment that now requires people to conserve it or lose it; to slow down a bit; to make new priorities; and to stop trying to do everything. Devastating to a use-it-or-lose-it crowd, these new directives sound like orders to stop living.
Given this new, shared experience in adversity, many polio survivors are experiencing a new pride in their polio, past and present. Some have found this pride in a support-group context, developing new respect for themselves and their life experiences as they meet others who have moved along a similar path, a pattern that I see happening here at these GINI meetings.
In Figure II, we find the people who had polio. Their life stories, "polio biographies" are situated within lifecourse stages – childhood to old age – and developmental tasks – learning how to become a mature adult over a life span.
As an example of our framework in action, let's consider the biography of Gina Stafford, who had never used mobility devices but who has weakened muscles in her stomach and back and has walked with a limp since her childhood polio. Two years before coming to the post-polio clinic, she started to experience difficulty in rising from chairs and using stairs, and she grew fatigued when she walked more than a few blocks. Her family's hiking trips stopped, a loss they all felt. After learning about how the late effects of polio were affecting her body, she changed some of her daily activities. She napped each afternoon before she got completely pooped out. She swam twice each week and got a handicapped-parking license tag.
Then she realized that her previously talkative 13-year-old daughter was increasingly silent around her. And one day her daughter exploded with a confession that she was embarrassed to be seen by her friends in a car with those license plates. "Why can't you be like other moms? Why are you so different?" she asked.
Although Mrs. Stafford was aware that her daughter's need for her to be like other moms was a normal part of adolescence, the child's reaction increased her own anxiety How would her children perceive her if one day she needed a wheelchair, and, perhaps more significantly, how would she perceive herself?
Mrs. Stafford's life course was being disrupted dramatically The way that she had expected herself to parent her children had been altered by the onset of post-polio weakness and fatigue. She was having to learn to accept new limitations – a new step in maturity while having to teach her children to live with a mother who had limitations – a new step in being a parent.
She spends a lot of time worrying about the future and her children.
Another woman, Kate McCall, was a 79-year-old retired social worker who had walked with a limp since she had polio as a child. She came to the clinic to learn how to manage new leg pain, weakness, and more frequent falls. The rehabilitation team advised her to use braces and crutches and to swim as often as she could. She went to the neighborhood heated pool several mornings each week and began to meet other older women who had arthritis and were also swimming to help manage their pain. She glowed with pleasure as she spoke about the camaraderie she found among her fellow swimmers, who looked to her for guidance based on her lifetime experience with disability. "I didn't realize I knew anything being disabled until they asked me," she said. "I'm an expert, and I didn't even know it."
Finding other women her age who were also limited in what they could do helped Mrs. McCall face her own daily struggles with better humor and spirit. She found new energy for starting the family quilt she had promised to make her children from their baby clothes. Her husband and children were thrilled to watch her develop a new interest that fit her current lifestyle. Indeed, Mrs. McCall learned to transcend her limitations by becoming engaged with the challenges of her retirement years.
One of the values of our framework is to alert rehabilitation professionals to the dynamics of living with lifetime disabilities. For polio survivors, the early polio traditions can function as both a source of distress when facing new functional losses or as a valuable resource when trying to adapt to them. For example, consider the polio tradition of working hard to meet goals and to overcome adversity: Mrs. Stafford had to work to discipline herself to cut back on her activities; a new skill she could well share with her children.
Given your new insight into these early and late-polio traditions, perhaps you can now use the life-course perspective to gain insight into the shaping of your own life and to help you to answer the question "And now what?" that faces you each morning.