A 2021 survey of more than 700 practicing physicians in the United States found more than 82% believed that people with significant disabilities have a worse quality of life than others. But on the whole, studies show people with disabilities report a similar quality of life to those without.

How can this disability paradox be reconciled? How does it get in the way of high-quality, equitable care for disabled patients?

Joel Michael Reynolds, an associate professor of philosophy and disability studies at Georgetown University in Washington, explored these questions during a Jan. 8 CHA webinar titled "The Health of People with Disabilities: Addressing Ableism and Disparities in the Clinic."

He defined ableism as "the assumption that the 'standard' or 'normal' able-body is in and of itself better than nonstandard or abnormal forms and the discrimination and oppression that results from this assumption." He said that ableism "doesn't just make us think that disability is bad, but ableism tricks us into conflating what it is to be disabled to what it is to experience pain and suffering."

Reynolds began his talk with a quote from philosopher Elizabeth Barnes from her book The Minority Body: A Theory of Disability: "There is nothing about what disabled bodies are like that by itself unifies or explains the category of disability."

Disparities in care
Reynolds referred to the case of a woman with intellectual disabilities in Pendleton, Oregon, who needed to be put on a ventilator early in the COVID-19 pandemic. Her physician denied it, citing her "low quality of life."

"And after threats of lawsuits, the woman was transferred to another hospital where proper care was offered, and lo and behold, she recovered," Reynolds said.

He noted that there were so many cases of discrimination on the basis of disability during the pandemic that the World Health Organization sent bulletins about them.

Reynolds pointed out that 30 years ago, pediatric residents were taught that the congenital anomalies Trisomy 13 and 18 were lethal. The disorders are characterized by severe cognitive disability and health problems involving nearly every organ system. "Though some infants did survive, the children were almost invariably institutionalized," Reynolds said.

In the age of social media, parents began sharing stories and videos of their young children with these conditions who were surviving and not institutionalized, he said. "Still, old myths die hard," Reynolds said. "Many physicians still today tell parents that death is inevitable."

Preference for able-bodied patients
In addition to the 2021 survey of physician perceptions, Reynolds cited a study of more than 25,000 clinicians across specialties. It showed that while the majority recognized ableism and disability bias as a problem, most demonstrated implicit biases against patients with disabilities and strongly preferred able-bodied patients over disabled ones.

"So we have an issue here," he said. "And I want to note that this is not just about correcting biases, right? There's research suggesting that this is having real ramifications in terms of care."

He said research suggests people with a disability are significantly more likely than those without to perceive that their physician isn't listening to them, isn't explaining treatment so that they understand, and isn't involving them in treatment decisions, among other perceptions.

From the time of Socrates in the 400s BC and into thepresent, examples abound about the presumption that having a disability is something that is automatically bad, Reynolds said. He cited several examples, including the 1927 Supreme Court case Buck v. Bell, where Justice Oliver Wendell Holmes Jr. wrote: "It is better for all the world, if ... society can prevent those who are manifestly unfit from continuing their kind ... Three generations of imbeciles are enough."

Said Reynolds: "There's one thing I really want us to pull from this ... every example I just gave, and every case, are judgments by able-bodied people concerning what it's like to be disabled."

He pointed out that disabled people's experiences are "wildly heterogeneous." People who are deaf do not experience it as not being able to hear, for example, and neurodivergent people who exhibit self-stimulatory behavior might argue that the problem isn't their stimming, as the behavior is known, but that the world is not comfortable with it.

"So let's actually listen to what disabled people say," he said.

Advice for clinicians
Reynolds discussed his AMA Journal of Ethics article "Three Things Clinicians Should Know About Disability." The piece advises clinicians that they have responsibilities to develop disability humility, to communicate better with and about patients with disabilities, and to recognize the authority of people with disabilities as experts about their own lives and communities and to elevate their voices.

"My number one piece of advice would be to try and cultivate an accessibility mindset," he said.

A wide range of patients can feel welcomed if a clinician does things like add a height-adjustable exam table, have an interpreter service available for deaf patients, and post a flyer about a nearby independent living center, he said.

Even if a clinician says slightly the wrong thing or accidentally offends a patient, he said, the patient will notice there is an accessibility mindset in play. "That will go a long way to build and maintain trust," he said.