Every now and then, I post help-wanted ads to hire a new person to join my “pit crew.” That’s my trying-to-be-funny name for the crew of people I’ve hired to come into my home and assist me in doing the things everyone does every day, such as getting out of bed and dressed or fixing meals. I have a disability and use a motorized wheelchair, so I need help with these routine activities.
Sometimes I resort to recruiting via Craigslist posts, and when I do, I’m prompted to choose a job category for my ad. You’d think I’d place the ad in the health care category, where it might catch the eye of someone trained as a certified nursing assistant (CNA). But I don’t choose health care—because that’s exactly what I’m afraid might happen. My general opinion of CNAs is that, while they’re nice people and all, their perspectives of the job are sullied rather than improved by their medical backgrounds. I’ve noticed from my own experience that CNAs tend to think of themselves as caretakers instead of personal assistants, viewing disabled people who need their help as passive and lacking agency over our daily decisions. They think we need someone with medical expertise to supervise us and guide us through the day.
But that’s not what I’m looking for at all. It doesn’t take a nurse to fix my breakfast. You don’t need medical training to know how to put my pants on me. And I certainly don’t need a supervisor; I’m way too old for that. Like everybody else, I want to determine the trajectory of my day for myself. Thus I place my Craigslist ads in the et cetera category. I assume that people looking for work in this category are more improvisational, more free and easygoing. I’m looking for workers who are et cetera types. Though they usually have no idea what to expect from this job, they’re up for accompanying me on my adventure. I much prefer that outlook to people who might have rigid expectations of what I’m supposed to be like.
Every year, I do a gig where I, along with other disabled folks, talk to first-year medical students at Northwestern University Feinberg School of Medicine as part of their curriculum. Prospective doctors ask us questions about how we navigate our days. I’m happy to take part in this because I think that anything that gives doctors a better understanding of disabled folks and how we operate is well worth a shot. Why? Because I also think that some of the deepest and most dangerous ignorance of, and disregard for, disabled folks is exhibited by doctors and others in the medical profession.
The medical establishment remains entangled in an outdated model of disability, which sees it as a condition that needs to be eradicated. Thus, many medical professionals think we are looking to them as saviors who are going to cure us. But, for a lot of us, the idea of shedding our disabilities is either impossible or unimportant. We have other goals in life and want to be respected enough to be accommodated in achieving those goals. But when it hits doctors and medical professionals that they can’t cure us, or that we aren’t interested in that course of action, they tend to see the doctor-patient relationship as a failure. So they write off dealing with us as a lost cause or a waste of time.
Therefore, when trying to access the health care system, disabled folks often experience subpar treatment or even flat-out rejection. There are many accounts of doctors and health care providers shrugging when confronted with the extra challenges and questions that arise when patients have disabilities. I believe this is rooted in an attitude within the medical profession that sees disabled folks as inevitably having a lower quality of life. There are well-established laws that make this kind of discrimination illegal. One of them is the Americans with Disabilities Act (ADA), which gives people with disabilities the right to request and receive reasonable accommodations in health care settings. For example, the law may require a physician’s office to provide a qualified sign language interpreter for a deaf person to adequately communicate with their doctor.
Many medical professionals think we are looking to them as saviors who are going to cure us. But, for a lot of us, the idea of shedding our disabilities is either impossible or unimportant.
But even though the ADA was signed into law way back in 1990, Health Affairs published research in January 2022 showing that an alarmingly high number of doctors are still ignorant about their legal obligations under the ADA. The survey of 714 physicians in outpatient practices found that 35.8 percent knew little or nothing of what the ADA requires of them, and 20.5 percent didn’t know that it is their responsibility to pay for accommodations.
Disabled people running into barriers in the health care system, and then facing an unlawful refusal by health care providers to provide the accommodations needed to overcome them, is a common problem. In December 2021, the U.S. Department of Justice announced that it had filed a lawsuit against Barnet Dulaney Perkins Eye Center PC (BDP), an optometry and ophthalmology medical provider that operates twenty-four facilities in Arizona. The announcement said the provider had allegedly violated the ADA “by refusing to provide patients with disabilities the transfer assistance they need—assistance that is routinely provided by healthcare providers across the country.”
BDP required these patients to hire third-party medical support personnel to transport them to and from BDP facilities on gurneys or stretchers, and then help them transfer to surgical tables. “This practice denies patients with disabilities full and equal access to BDP’s health care services and impermissibly imposes a disability-based surcharge on such patients by forcing them to pay extra for treatment,” the announcement added.
Even disabled children have been victimized by the hostility of doctors. In 2020, the American Academy of Pediatrics felt it necessary to issue a policy statement speaking out against the practice of denying children with intellectual disabilities organ transplants because of their disabilities. “There is the biased presumption that people with disabilities have a lower quality of life than those without disabilities,” the statement read, “and, therefore, do not receive as much benefit from the transplant as a person without disabilities or that they cannot be expected to derive any benefit by having their life extended by a transplant.”
And in May, five Democratic U.S. Senators joined a letter initiated by Senator Tammy Duckworth, Democrat of Illinois, asking the Government Accountability Office to conduct a study on the physical and social barriers to accessing medical treatment faced by people with disabilities.
“For example, inaccessible medical equipment, such as examination tables, weight scales, X-ray equipment and exam chairs, are common barriers to people with mobility-related disabilities,” the letter read. “People with print disabilities, including people who are blind, may experience difficulty accessing printed materials, such as prescriptions and health records, and people who are deaf or hard of hearing may lack access to interpreters or transcription. People with intellectual or developmental disabilities face challenges of informed consent; are not offered opportunities to make decisions on their own through supported decision making; and rarely are provided health related materials in accessible, plain language formats.”
These disparities in treatment were further heightened by the pandemic, the letter says, with people with disabilities having their options stretched thin amid “so-called crisis standards of care”—short staffing and limited resources at health care facilities. And other factors, such as gender, present their own set of challenges: “Women with disabilities, who make up about a quarter of all women, often face barriers to reproductive healthcare, including being allowed to make their own decisions about the care they receive, due to inaccessible facilities, exam tables and diagnostic equipment, and misperceptions about their ability or readiness to become parents.”
As the research reported in Health Affairs noted, “To achieve equitable care and social justice for patients with disability, considerable improvements are needed to educate physicians and make health care delivery systems more accessible and accommodating.” That’s why I do the gig at Northwestern University. When I talk to the medical students, I have to be quick, because each session is only fifteen minutes. So I make sure I always tell them about my pit crew and why I search for them in the “land of et cetera.” I tell them that when they encounter one of us as a patient, they should take an “et cetera approach.” They should take us as we are and go with it. They should find out what our goals are and do their best to be of service.
If the next generation of medical professionals can take this approach to heart, it won’t be a failed relationship at all. It will be a great success.