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Barriers in health care for people with disabilities: It’s not what you think

On the final day of Stanford Medicine X, Alice Wong, founder and project coordinator of the Disability Visibility Project, moderated the poignant, at times humorous, and constructive panel discussion called “Interrogating Accessible Care and Patient Power.”

Panel participants included Robin Wilson-Beattie, a disability and sexuality health educator and writer; Ryan Easterly, executive director of the WITH Foundation; and Mary Lou Breslin, co-founder of the Disability Rights Education and Defense Fund (DREDF).

While they mentioned tangible, perceptible obstacles to care, like the lack of a wheelchair ramp into a building, the attitudes of medical staff, including doctors, was a predominant theme.

“Practitioners have the same biases as the public,” said Breslin. And attitudes and associated assumptions are an unseen barrier to care, high-quality or otherwise.

Poignant were the panelists' stories about blatant discrimination and a lack of empathy, coupled at times with incognizance of caring for people with a disability.

When she met with a nurse to schedule chemotherapy for breast cancer, Breslin, who uses a wheelchair, was told that she would be unable to come to that clinic for treatment. “Why?” Breslin asked. The nurse explained, “This is an ambulatory clinic, and you are not ambulatory.” At the time, Breslin worked at a law firm, and was able to proceed with legal action. It’s a shame it had to go that far.

Among the rather humorous anecdotes, Wong noted (and the others confirmed) that many doctors are still surprised when people with a disability express an interest in having children. “You want to have children? How does that happen?” I’m not sure if Wong was quoting a doctor verbatim, but the story prompted gentle laughter from the audience.

Easterly also clarified that every visit to the doctor’s office isn’t for his disability, yet it’s the first thing doctors usually mention. There's also the healthcare staff that never speaks to you, only to your appointment escort. The other panelists nodded their heads in recognition.

There were numerous other barriers discussed, including many things most people take for granted, such as transportation. If you can’t drive or have to travel a great distance to find a center that can accommodate you, it’s more than a hassle -- it can impact quality of life and health outcomes.

If people needed another reason to care about these issues, the panelists also compared their barriers to care to those of more than 70 million baby boomers in the United States. From financial hurdles, to the logistics of transportation, access to care in rural areas, and outdated clinics without the resources to modify accommodations, there’s a lot of overlap.

Towards the end of the session, Wong shifted the discussion’s focus to proposed solutions and first steps to shift mental models and mindsets in a positive direction.

The panel challenged medical schools to integrate care for patients with a disability into the curriculum, find opportunities for students to interact with those patients, and achieve greater diversity in the student body. In turn, a more diverse student body would feed a more diverse workforce.

“I wish there were more disabled students in the health sciences. If we had a more diverse workforce of healthcare providers, that would make a big difference,” Wong said — an insightful perspective.

Previously: On humanity, dignity and seizing opportunity: A call to action at Medicine X and It's back! Stanford Medicine X returns to campus
Photo from Shutterstock

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