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?

My "Coming Out" Story at TEDxFoggyBottom

Have you ever had a shameful secret, something you hid from the world, something you wished more than anything that you could get rid of?

I did. Growing up, I had a severe stutter that was often so bad I couldn’t get out any words at all. One of my earliest memories is hiding in the janitor’s closet during recess so I didn’t have to talk to anyone. In second grade, I stabbed myself with a pencil so I could get out of answering in class. That piece of pencil lead is still in my leg as testament to my shame.

If only I could get over my deepest shame, my terrible fear! Surely fear is something bad, something that prevents us from reaching our goals. Yet, books and movies are filled with stories of success that only come after overcoming fear and facing adversity. So how do you select for the good parts of fear that build character rather than destroy confidence?

In February, after more than 30 years of hiding, I finally “came out” and talked about my stuttering in this TED talk. Becoming open about your deepest, darkest secret—it’s not easy. Actually, it’s downright scary to open that closet door when you spent your whole life keeping it shut. A part of me still cringes when I think of the little girl hiding in the closet with the pencil lead in her thigh. A part of me wishes I were never that little girl. Yet, I also recognize that being a person who stutters is part of my identity, like being a woman, a sister, a wife, a doctor, an Asian-American.

 

In the talk, I discuss three lessons that have helped me the most:

#1. Separate fear from shame, and take shame head on. It took me many years to learn that fear different from fear. Fear is when you are afraid of something, afraid of doing or trying something. Shame is when what you are afraid of is yourself. Hiding feeds shame, and openness is its antidote. To overcome fear, we have to first overcome shame.

#2. Tackle your “what if?” with “so what”. There are four words that plague us and feed shame and fear: what if I fail? Instead of avoid them, answer with two more: “so what?”. If there’s something you want to do, what’s the worst that will happen if you go for it? We know the answer, right? We’ve all been there. Nobody will laugh. You won’t die. As Tina Fey says, you can't be that kid standing at the top of the waterslide, overthinking it. You have to go down the chute.

#3. Ask yourself, what’s the worst that could happen if I DON’T do it? Who will it hurt? If you want to be a doctor and don’t become one because you’re too afraid, who will serve your community? If you’re afraid of speaking up to help someone in need because you’re afraid of stuttering, who will do it instead? All of us are here today because other people made sacrifices, because they faced fear head on for us. Now it’s our turn, for those who follow.

Please share  your stories: have you brought something you're ashamed about into the open? How have you turned your fear inside out?