“We should not, however, lose sight of the fact that people living with impairments can experience negative effects tied more directly to their bodily conditions. People with impairments that involve, for example, fatigue, pain, depression, or chronic illness may want both to overcome social barriers and discrimination that oppress all people with disabilities, and to voice their desire to remove or address the troubling accompaniments of their impairments, through medical or other means.”
“I want to have more energy and less pain, and to have a more predictable body; about that there is no ambivalence….Yet I cannot wish that I had never contracted ME, because it has made me a different person, a person that I am glad to be, would not want to have missed being, and could not imagine relinquishing, even if I were ‘cured.’ … I would joyfully accept a cure, but I do not need one.”
“Some conditions of the body may be inseparable from physiological suffering (e.g., living with chronic pain or nausea), but the ways of life that people form within them may be quite valuable, and the suffering they experience may play some significant constituent role in what brings the value.”
“There are, I think, many versions of disability pride.”
A central principle of Disability Wisdom is the idea that impairments are not always negative for everyone all the time. In fact, when I give training presentations, I often start by distinguishing between impairment and disability. “Impairment” is a physical or mental difference, while “disability” is the disadvantage that can occur when attitudes or environments are incompatible with that difference. This concept is often known in academic circles as the “social model” of disability.
However, as this excellent article points out, sometimes a pure social model doesn’t fully capture people’s experience with impairments. This may be especially true for medical conditions that cause inherently unpleasant symptoms (such as pain, nausea, or depression); conditions that get progressively worse or vary over time; or conditions that threaten life expectancy. For these types of impairments, people may genuinely suffer and they may desire medical treatment. But, at the same time, people might still place some positive value on having the condition. This article urges medical professionals and disability scholars to take a more nuanced view of impairment, disability, and chronic disease.
Rethinking disability: The social model of disability and chronic disease
