"Motivation for maintaining good health practices has to come from within me. I can't let my family pressure me into trying to do some sport or activity that I know is physically impossible. They have to learn to accept my limitations. I only want to do those activities that I know I am capable of and am comfortable doing." [32-year-old woman with cerebral palsy]
Maintaining good health as a woman with a physical disability demands essentially the same precautions and proactive measures as for all women, with a few extra challenges. Keeping a diet that is low in fat is always advisable, but women with severe functional limitations may have to rely on attendants or friends to cook for them, making it harder to control the nutritional content of the meal. Others may be forced to skip meals to divide limited attendant hours among eating, bathing, and other essential activities. We all know to avoid carcinogens like cigarette smoke, but might there be an even greater negative effect for women who are less mobile or already have impaired breathing? Exercise seems to be a universal recommendation for maintaining good health, but for women with physical disabilities, options for exercise may be seriously limited by a lack of accessible equipment and facilities, a lack of information about what type of exercise is best for them, or the severity of their physical impairment itself. In the literature there has been considerable analysis of how an individual's beliefs about her health affect her health maintenance behaviors. We are concerned that the common stereotype that people with disabilities are sick may promote "sick role" behaviors, that is, passivity and exemption from the responsibilities of life. In the interview phase of this study, we analyzed factors that were associated with wellness. We found that women who led active, healthy lives had high self-esteem, and proactively sought out and followed information about how they could maximize their health. In the national survey, we included questions about whether or not participants followed a list of health maintenance behaviors, as well as questions about their height and weight in order to calculate their body mass index.
We asked participants to indicate which health maintenance behaviors they practiced. No significant differences were found between women with disabilities and women without disabilities in eating a balanced diet (77 percent versus 73 percent), getting adequate rest (73 percent versus 73 percent), maintaining a healthy weight (61 percent versus 56 percent), moderation in alcohol consumption (81 percent versus 81 percent), not smoking (68 percent versus 66 percent), and not using recreational drugs (69 percent versus 72 percent). Significantly fewer women with disabilities, however, reported that they exercised regularly (46 percent versus 73 percent).
Our finding that women with and without disabilities do not differ substantially on maintaining a healthy weight was based on a body mass index analysis (weight in kilograms divided by height in meters squared). The average body mass index of women with disabilities was 26 kg/m2 (the standard for normal is 20-25 kg/m2). About the same percentage of women with and without disabilities were in the various obesity categories (23 percent versus 28 percent); however, significantly more women with disabilities were in a lower BMI category (20 percent versus 11 percent). Little exists in the literature about appropriate goal BMI for women with specific disabilities. In our sample, women with spinal cord injury or neuromuscular disorders were more likely to fall into the <20 kg/m2 category than those with other disabilities, which is not surprising in light of the degree of loss of muscle mass in these disorders. More women with post-polio and multiple sclerosis were in the moderately obese category than women with other disabilities. We wanted to know if whether or not a woman smoked, maintained a healthy diet, exercised, or had hypertension was associated with obesity. For women without disabilities, there was an association with diet, exercise, and hypertension. For women with spinal cord injuries, obesity was associated with high blood pressure. For women with post-polio, obesity was associated with lack of exercise.
We now have evidence that women with disabilities practice about the same health maintenance behaviors as women without disabilities, with one important exception, exercise. Many factors may contribute to this difference, including a lack of accessible exercise equipment and facilities, fatigue, pain, and weakness that may be related to disability, a lack of time that may result from the increased effort needed to execute daily living tasks, warnings from physicians that exercise may aggravate the disability, or the assumption that there is little benefit to exercise if you have a disability. We heard from many women who struggle to obtain information about what type of exercise could benefit them and what regimes they could follow to maintain optimal health. Research is needed on how to determine ideal body weight for women with physical disabilities, what the health and functional impact of increased body weight is, and whether some disabling conditions increase the risk of obesity or malnourishment. We have only begun our investigation of health maintenance for women with physical disabilities. In the next three years, we will be examining in more depth factors that are associated with wellness in this population and strategies that could help women with disabilities strengthen their belief in their capacity for good health and increase their health maintenance behaviors.