On Caring for the Neglected 20%: People With Disabilities

In last month’s Health Affairs, I wrote a personal perspective about unequal treatment for patients with disabilities. Nearly 20% of the population in the U.S. have a disability; yet, teaching about care for people with disabilities is not a mandated part of the medical curriculum.

This is a deeply personal issue to me. As someone who grew up with a speech impediment, I am acutely aware of the prejudices and disparities that result from lack of knowledge.

I’m grateful to Health Affairs for publishing this article and producing the associated podcast. This has been nearly10 years in the making—thanks to my mentors and colleagues Dr. Fitzhugh Mullan and Dr. Audrey Young, among others, for encouraging me to write about my experiences. 

And I will be forever indebted to Professor Vivian Sisskin: a friend, mentor, supporter, cheerleader, and best speech therapist ever. This essay is dedicated to all those who are fighting to ensure equitable and accessible healthcare.

Link to Health Affairs article:

Condensed version in the Washington Post:

Care for the Neglected 20%

In this week’s “Shots” on NPR, I wrote about the barriers to care faced by patients with disabilities. Some of these barriers can be directly attributed to the lack of education healthcare providers receive about caring for people with disabilities.

Doctors' Ignorance Stands In the Way of Care For the Disabled

I was shocked to learn that though nearly 20% of the American population have a physical or mental disability that causes significant life impairment, studies show that less than 20% of medical schools have curriculum that discuss the needs of patients with disabilities. More than half of medical school deans report that their students are not competent to treat people with disabilities.

As someone who grew up with a severe and often debilitating stutter (see TEDxFoggyBottom talk where I discussed this in depth), caring for people with disabilities is a topic very personal to me. As a child, I had to visit the doctor several times a month for asthma attacks. When I had trouble getting out my words, doctors would ask my parents if I were mentally retarded. Sometimes, they initiated far more aggressive treatment because they thought my stutter was from difficulty breathing.

When I was a medical student, I recall an attending physician ordering a head CT on a patient who had a severe stutter just to make sure he wasn’t having a stroke. Had he listened to the patient for a few more minutes, he would have found out that this was how the patient always spoke, and that he was there for a completely unrelated issue. This is just one of many examples of how lack of understanding and training present a significant barrier to care.

In response to the NPR article, some readers have written about the burgeoning field of Physical Medicine and Rehabilitation. This is a much-needed specialty in medicine—but all doctors, nurses, and other healthcare providers need to be educated about how to take care of 20% of our patients.

I’d love to hear from you. What can we do to better educate healthcare professionals? Are there other areas that are neglected in medical training?