​The Medical Model — Rx for Discrimination?

Last October, the respected health policy journal Health Affairs (“the bible of health care policy”) dedicated an entire issue to the topic of disparities in health care affecting the lives of people with disabilities. In a shocking revelation to many — but not to those of us on the receiving end of unfair medical practices — lead researcher Lisa Lezzoni, a widely recognized expert on disability and medical disparities, laid bare discriminatory attitudes and practices common to the medical profession.

The medical model of dealing with significantly disabled patients, in its simplest form, can be stated bluntly: We are seen as broken, and most doctors feel it is their job to “fix” us, but they can’t. Lezzoni’s research turns the tables and proves that it is the healthcare system that is broken when it comes to treating patients with significant disabilities. Most doctors know they are poorly prepared to deal with complications like pressure sores, autonomic dysreflexia, spasms, neurogenic bladders and neuropathic pain. They feel trapped and fearful, which gives rise to some very “un-doctor-like” behaviors.

In her nationwide survey, Lezzoni found a whopping 82% of doctors surveyed think that people with disabilities have a poor quality of life, even though surveys of disabled people say otherwise. We know that given sufficient societal and programmatic supports (the applicable legal term is “accommodations”), we can and often do live productive, satisfying lives. But doctors’ first impressions of us are formed by their limited view of us combined with a “cold” medical chart and scant knowledge of the ADA.

Besides the fact that doctors rarely, if ever, see us in our homes, one reason for doctors’ widespread ignorance of our actual lives and abilities is that most medical schools have not taught the social model of disability. We have been segregated in our “special” medical model category (broken). Using initial focus groups that promised anonymity, Lezzoni recorded and logged doctors’ shocking comments and strategies for how to avoid taking us as patients and even how to stop treating existing disabled patients. Many stated bluntly that their disabled patients feel entitled, they want too much, are always complaining and take up too much of their time. The focus groups helped inform the surveys.

The surveys showed that most doctors fear being sued yet have little understanding of how ADA accommodations work. They have no tools or understanding of how to deal with us. Since medical schools have not included ADA specifics in their curricula, how do we even begin to combat such widespread ignorance? The most obvious answer is to require med schools to include courses on disability awareness, the ADA, and the need to recognize the social model of disability.

Lezzoni suggests that the best thing we can do to spur significant change even sooner is to require all medical clinics and private practices to have at least one adjustable exam table and one wheelchair scale on the premises, perhaps more in larger practices. Exam tables and scales are basic tools for all medical practices, yet 60% of medical practices do not use accessible exam tables or chairs, and almost 80% do not use wheelchair-accessible scales. Requiring their use would be a highly visible, easily understood accommodation whose implementation would be a first step toward a broader solution.

As a respected healthcare researcher, Lezzoni — a wheelchair user with MS herself — chaired the Access Board’s committee that was tasked with establishing guidelines for integrating the ADA into healthcare practices. But the guidelines have been gathering dust, and all is not lost. The Department of Justice has the authority and power to bypass Congress and implement the guidelines. ADA enforcement is their job.

And it is our job to hold the DOJ, Congress, and doctors accountable.