Locked Out of Care: The Inaccessibility Dilemma in Medical Settings for Disabled Individuals
October 5, 2023
By Anita Cameron
I dread going to hospitals. Actually, I dread going to anyplace “medical” – doctor’s offices, clinics, labs. Why? Because in those spaces, biases against me, as a disabled person, are on full display.
The first thing I notice when I enter medical settings is that they are generally inaccessible to disabled people. Although folks using wheelchairs can usually get in the door, beyond that, accessibility ends.
In many medical offices, the check-in process is done at a kiosk where you enter your information onto a screen and wait for your name to be called. As a cost-saving measure, these kiosks are unstaffed; everything is done independently by the patient. There’s almost never any signage or other way to show someone how to get assistance if they need it - and they usually will. The kiosks are often too high for someone using a wheelchair or for someone who is of short stature, and the screens are inaccessible to those who are blind, have low vision or who cannot read. We’re expected to rely on other patients to assist us if, heaven forbid, we are alone, but that’s discriminatory. We shouldn’t be put in possible danger by being forced to give random strangers our personal information. There should be someone on hand to help at all times.
After check-in, the first thing that happens is the weigh-in, but standard scales used in hospitals or clinical settings are never accessible to wheelchair users. I’ve had friends who are power chair users tell me that they have been advised by medical personnel to go to a zoo or a factory if they want to get weighed in their wheelchairs. Yes, this was said with a straight face; it was no joke.
Once in the examining room, I note that the examination table is inaccessible to a wheelchair user. They aren’t adjustable in height, so someone using a wheelchair cannot transfer themselves from the chair to the exam table.
Now, let’s talk about staff – the doctors, nurses, aides, techs and other people whom you’ll most likely interact with. Most of them may be good people with good intentions but they are trained to deal with disabled people only as problems, specimens or oddities. At best, we’re seen as medical conditions; at worst, we’re identified as the devices we use. They are not trained to see us as fully human, as a community, or to see disability as a culture, or to understand the social model of disability.
It is the societal view of disability and disabled people that informs medical professionals. It is inherent in their training. It builds upon and perpetuates bias, which then impacts the health care, or lack of health care, we receive.
So it’s not surprising that in 2021, Lisa Iezzoni, a professor of medicine at Harvard University, conducted a survey of 714 doctors around the country as part of a study. She found “82.4% reported that people with significant disability have worse quality of life than nondisabled people. Only 40.7% of physicians were very confident about their ability to provide the same quality of care to patients with disability, just 56.5% strongly agreed that they welcomed patients with disability into their practices and 18.1% strongly agreed that the health care system often treats these patients unfairly.”
This is frightening, to say the least, because those attitudes clearly affect how the medical community treats us. They really don’t want to deal with us; in fact, they really don’t want to see us. It’s why medical settings, which should be the most accessible places, are egregiously inaccessible. It’s a vestige of the old “ugly laws,” which were in effect in this country from 1867 to 1974. Under these laws, it was perfectly legal to arrest and jail disabled people for the crime of appearing in public.
Inaccessibility anywhere in this country is not a technology issue. It’s not a cost issue, either. We’re a country that has rovers and probes in and around other planets. We have devices traveling through interstellar space. We have telescopes that can see galaxies billions of light years away, yet we somehow don’t have the technology to ensure that disabled people have equitable access to health equipment, diagnostic equipment and other healthcare resources and services.
Even with laws like the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, we still face discrimination, bias and a woeful lack of access to basic public accommodations, facilities and services.
Disabled people have now been recognized by the National Institutes of Health as another group of people who experience health care disparities. It remains to be seen whether this recognition will lead to better physical, programmatic and attitudinal access to medical care.
Anita Cameron is a disability justice activist who has been involved in social change activism and community organizing for 42 years. Anita has been arrested 140 times for nonviolent civil disobedience fighting for the civil rights of all disabled folks, has been invited to the White House on three occasions, has met three sitting U.S. Presidents and two Vice Presidents, and helped to organize a national march. Anita received the 2023 Corey Rowley National Advocacy Award from the National Council on Independent Living for her work in systems change advocacy and activism.