June Isaacson Kailes, MSW, LCSW
Can disability, chronic conditions, health and wellness coexist? This question has broad and significant implications on the quality of life for people with chronic conditions and disabilities. Depending on personal beliefs, values and current experience, people often emphasize one aspect over another in their own definitions of health. Traditional definitions describe health and disability at opposite ends of a single health continuum. Such definitions lead far too many people to view health and disability as mutually exclusive of each other, an either/or proposition. This view must be examined as it has damaging and lasting effects on people who live with disability and chronic conditions. As Bob Williams, Deputy Assistant Secretary for Disability, Aging, and Long-Term Care Policy in the U.S. Department of Health and Human Services puts it, "Learned helplessness truly is the greatest crippler anyone can experience. And, many people with disabilities have unfortunately learned to be passive, if not completely disengaged, where questions of their own health and well being are concerned." Many see health as just one more thing beyond their control, something they cannot change or influence. (Williams, p.5).
The ability to practice healthy behaviors, even in the presence of disability, has led to newer models of health. These newer definitions view health as multidimensional and see optimal health as defined within a given person's unique circumstances. Health is viewed as the maximizing of one's potential along various dimensions. Health includes a dynamic balance of physical, social, emotional, spiritual and intellectual factors. When this definition is used, disability poses no obstacle to maximizing health and one's potential (Lanig, p.13). When health is viewed not as the absence of disability or chronic conditions, but as the ability to function effectively in given environments, to fulfill needs and to adapt to major stresses, then, by definition, most people with disabilities are healthy.
Peg Nosek, Director, Center for Research on Women with Disabilities and Professor Department of Physical Medicine and Rehabilitation at Baylor College of Medicine, writes, that the stereotype of infirmity, sick people in wheelchairs covered with blankets, haunts people with disabilities. Curious new acquaintances or health providers will ask, "when did you first get sick?" Instead of, "how are you doing?" people with disabilities often get asked, "how are you feeling?" (Nosek, p. 2) Even in those situations where people are experiencing poor health, chronic fatigue or pain, they don't want to be asked how they feel all the time.
Health care providers, like many others, are not free of the common disability stereotypes which cause discrimination and environmental and attitudinal barriers that people with disabilities encounter daily. Health providers, like society at large, have the same, if not stronger, misunderstandings about the health of people with disabilities. People working in medical settings constantly have these stereotypes reinforced, often because they are only exposed to people with disabilities and chronic conditions who are indeed sick. In addition, medical students report there is very little, if anything, taught about disability, living with disability, or health, wellness and disability in medical school.
When the medical system does not understand the health needs of people with disabilities, this translates into practices and mistakes that affect people in the most important aspect of their lives, their health (Nosek, p. 6). A provider who equates disability and difference with dysfunction and illness, invalidates people with disabilities.
While disability and long-term conditions can involve pain or poor health, disability and health can and do coexist. Most people with disabilities are not sick. They are indeed healthy, when health is defined as the absence of illness and disease beyond disability. The assumption that health, wellness and disability cannot coexist is a myth. Providers who understand that people with disabilities can be healthy, active, and assertive participants and co-managers of their health and health care, can be of tremendous assistance in helping people select and practice tailored health promotion behaviors and activities directed at increasing a person's level of well-being.
Physical exercise, good nutrition, stress-management and social support are important for every one, but they are actually more critical for people with disabilities who sometimes have been described as having "thinner margin of health" (Becker, p. 236). This does not imply that people with disabilities are sick. It means that people with disabilities are more vulnerable and more susceptible to certain health and secondary conditions depending on their disability. For example, some people with spinal cord injuries are more likely to have to deal with pressure sores, urinary tract infections and kidney conditions. People with respiratory conditions can be more vulnerable to upper respiratory infections and pneumonia.
Health promotion activities are critical for people with disabilities who are prone to have a more sedentary lifestyle and have a tendency for under, over, or misuse of various muscle groups. Although we cannot yet replace the cells we lose as we age, ". . . research is showing us that we can improve the efficiency of the remaining cells by staying as flexible as possible and by challenging our heart, lungs, and muscles to maximize in strength and endurance through exercise (Ontario Federation for Cerebral Palsy) p. 9)"