I helped take care of my father, who had Alzheimer’s. Medicare paid for an occupational therapist to help with his upper body strength and coordination. My father had boxed back in the days when a lot of Jews boxed. It turned out that the OT enjoyed boxing. For therapy, we put boxing gloves on Daddy, and the OT would yell out “left hook,” and Daddy would punch. He was in his element.
I tell this story because of recent conversations on this blog about the rights of people with disabilities. Echidne asked what it meant to have a “right to life, liberty and the pursuit of happiness” as discussed by Glenn Beck, for example.
Medicare isn’t interested in “the pursuit of happiness.” It provides physical and occupational therapy, often with the expectation that the patient shows improvement. The goal is to make the patient more independent. As the Center for Medicare Advocacy explains:
Many Medicare denials are based on the lack of expectation of a significant improvement in the patient’s condition within a reasonable and predictable period of time. However, "restoration potential" is not required by law and a maintenance program can be covered if skilled services are necessary to prevent further deterioration or preserve current capabilities.In my father’s case, he had a progressive illness, and we wanted him to retain as many skills as long as possible, but we had no hope of him becoming independent. Our main concern was making him less miserable. To that end, the OT kept boxing with Daddy as long as he could.
Before I moved in with him, I happened to read “Love’s Labor: Essays on Women, Equality, and Dependency” by Eva Feder Kittay, a philosophy professor who had a child with severe to profound retardation.
Kittay had examined liberal political theory that imagined citizens as free and independent, and she had seen flaws in regard to women. Male philosophers saw themselves as independent even when others were tending their homes and raising their children. She writes:
The independent individual is always a fictive creation of those men sufficiently privileged to shift the concern for dependence onto others.Even John Stuart Mill assumed women would continue to have domestic responsibilities, Kittay writes. (This reminded me of Ashley Montague, the pioneering anthropologist who wrote “The Natural Superiority of Women,” published in 1952. Like Mill in philosophy, Montague influenced his field as a man championing women’s rights, but he, too, saw it as natural that child-raising would remain the purview of women.)
Kittay recognized her daughter, Sesha, as fully human, deserving of rights like any other citizen, even though she would always be dependent on others for her care.
Kittay faults disability advocates who place too much emphasis on the need for independence. This can create an unreal expectation in parents and the person with disabilities; not everyone can become independent. It also means therapy for independent living gets higher priority than therapies aimed at enjoyment of life. Performance matters more than enjoyment. One reason may be that a professional can measure whether a child can dress herself, for example. It is more difficult to measure happiness.
All people will be dependent at some point in their life because we all start as infants, many of us will need help at the end of our days, and many will need help at different points in between.
Many feminists who reject the idea of atomistic individualism still insist on mutuality, in which people relinquish some independence in exchange for help from others, Kittay notes. But some relationships go beyond mutuality and interdependence. Some people are dependent, she says, and we must fully accept and recognize that.
I see this issue while working with cancer patients. Independence is so valued that many people (including me) hate to ask for help.