Healthcare apartheid and quality of life for people with disabilities

The sizzling debate on healthcare reform has very little to do with me as a person with a significant physical disability, yet it fuels the fire in my belly. I am well insured because I work and supposedly have access to some of the best healthcare in the world, yet I continue to receive, and suffer from, some services that are second-class for several reasons. Our current system is best prepared to deal with acute conditions; those of us with multiple chronic conditions are mostly left on our own to manage a bevy of specialists, each with their restricted, though extensive, knowledge and limitations in their practice. Trying to find a generalist who has knowledge of wellness in the context of disability is like trying to find a tofu burger at a Texas barbecue. There is nothing in the current system of medical education that prepares physicians on how to keep people like me well. As a result, when I go to see my internist with concerns about a seemingly common problem, for example, stomach pain and fatigue, it’s just so easy for her to say “That’s to be expected with such an extensive disability.” Aside from being an easy out, disability can mask possibly serious symptoms. The system lacks incentives to look deeper into a seemingly simple but potentially complex problem and consult with my other specialists to rule out, identify, and treat. …