Illustrations by Mat Barton

Over and over again I hear from fellow wheelchair users, “My doctor knows little or nothing about spinal cord injury.” Or, “It’s really hard to find a urologist who has any real understanding of SCI.” We talk among ourselves about how important it is to have a doctor with experience treating chronic SCI, cerebral palsy, multiple sclerosis or whatever condition we may have. But finding that doctor can seem nearly impossible at times.

Dr. Lisa Iezzoni, Harvard Medical School professor and a respected public health care researcher, knows this better than anyone. As a doctor with MS and a wheelchair user herself, she has talked to more than 300 people with significant mobility disabilities and conducted studies documenting disparities in medical care for 25 years. 

Her most recent series of studies found that a shockingly high percentage of doctors are ill-prepared to treat us. More importantly, she uncovered specific underlying causes why. Not only are most doctors undereducated about patients’ disabilities, but they also know little about the Americans with Disabilities Act and how to accommodate patients with disabilities. Bias and negative attitudes toward disability can also be factors. Some doctors are so reticent or fearful to offer treatment that they find ways to discharge disabled patients from their care or avoid accepting them altogether. 

It was my annual cardiology visit, not a big deal, so I was alone. The nurse brought me in and did her workup while I sat in my wheelchair. When the doctor came in, I transferred over to the exam table. The cardiologist moved my chair (with permission) across the room so that he could move around the table easier. There were no major findings in my exam so when he finished he said, “Great, see you back in a year,” and left the room. I was sitting comfortably on the table, but my chair was about three steps away. I waited a moment to see if he or a nurse would come back to help me. They did not. Too embarrassed to call out for help, I lowered myself to the floor, slid across the linoleum tiles and climbed back up into my chair. Was it safe? Not really … but it worked.

Kathleen via Instagram

Inaccessibility and Bias

Iezzoni shared her shocking findings on NPR’s Science Friday, including that only 22% of surveyed doctors routinely weighed patients on wheelchair-accessible scales, and nearly 60% do not use accessible exam tables and chairs. Host Ira Flatow said, “I can imagine if someone tries to visit an office and they can’t get the services that they expect, it’s got to be pretty discouraging.”

“Yes. Well, it’s not just discouraging,” Iezzoni said, “it’s bad quality of care, and it leads to risk of disease not being diagnosed until later stages, which could put people’s lives at risk.” And that is precisely the point of her decades-long research, demonstrating that disparities in medical care are a real life-and-death problem that is pervasive and resistant to change. 

It is not simply an accessibility problem. There is a deeply held, often-hidden bias driving the obvious inequities in medical care: 82% of doctors surveyed believe patients with disabilities have lesser quality of life than nondisabled patients, even though studies show that those with disabilities feel their quality of life is as good as, if not better than, those without disabilities. 

It all came to a head for Iezzoni during the pandemic, when ventilators and other medical resources were in short supply. She heard many stories of people with complex disabilities who had to go to the back of the line or do without the care they needed. This took the life of Michael Hickson, a Texas quadriplegic with a wife and five children, who was refused treatment for suspected COVID-19 while hospitalized. A recording by his wife, Melissa, captured her conversation with her husband’s doctor.

On the recording, the doctor justifies his decision to withdraw life-sustaining treatment like tube-feeding and water by stating his preference for treating ambulatory patients who can communicate clearly, and adds that her paralyzed husband has little or no quality of life. When challenged by Melissa, he says that he would withhold lifesaving treatment in similar circumstances from any of his own family members. Melissa says, “That’s a lie,” and now questions his ability to make that decision. He replies that she doesn’t know him, and knows nothing about him. To which she says, “And you know nothing about me.” Her implication is clear: How can a doctor assess her husband’s daily quality of life without knowing anything about him beyond his medical charts?

Six days later, Michael Hickson died.

Changing the Culture of Medicine

Tara Lagu, a health care researcher and professor of medicine at Northwestern University Feinberg School of Medicine, focuses on health care disparities and co-authored the recent study about doctor’s attitudes toward disabled patients with Iezzoni. In a New York Times article on the research, she bluntly states what must be done to correct the underlying bias and obvious disparities: “We have to change the culture of medicine.”

Lagu focuses on culture because in spite of 50 years of successful disability civil rights legislation, disabled Americans still experience profound differences in care. Laws can have an impact on policies and budgets, which are the building blocks of access, but they don’t change people’s perceptions and/or long-entrenched biases. Iezzoni also argues for a broader human rights approach that would “maximize the health and dignity of disabled Americans and support their full participation in the community.” In recent decades, people with disabilities have made progress in pushing society to move beyond a medical model of disability — viewing disability as something to be treated or cured — and toward a social model where people with disabilities are equal members of society. 

Sadly many doctors remain rooted in the medical model and are arguably among the ADA’s worst offenders. In a 2021 study, Iezzoni writes, “More than 30 years following the ADA, most physicians still do not use accessible equipment for routine medical care for patients with mobility disability.” They see people with disabilities through the only lens they have been trained to use: the medical model, based on the idea that disabled patients are broken and that their job is to fix them.

Photo by Leisa Thompson

Dr. Feranmi Okanlami, a professor of medicine at the University of Michigan, is working to change the culture of medicine from the inside.

“Any budding medical student thinks disability is a pathology,” says Dr. Feranmi Okanlami. Okanlami is a doctor, wheelchair user and associate professor of medicine at University of Michigan, where he is director of Services for Students with Disabilities. “Most people would think that we’re supposed to go into medicine to cure the world of illness, to then make sure that we eradicate these things that we see as sort of a scourge on society.”

But most doctors also say they have neither the time nor the specific education to provide quality health care to people with disabilities. Iezzoni’s research shows that only 40.7% of doctors said they were “very confident” that they could provide the same quality of care to disabled patients as they do to their nondisabled patients. 

Other telling stats shed light on doctors’ lack of confidence on the basics of providing access: 35.8% of physicians reported knowing little or nothing about their legal responsibilities under the ADA, and 71.2% responded incorrectly about who determines reasonable accommodations for patients with disabilities. No wonder they fear ADA lawsuits. As a whole, doctors get a failing grade not only in disability health, but also in disability law.

Which leads to another main cause of inequitable health care: a medical school culture that is sorely lacking in disability competency curricula.

As a doctor who uses a power wheelchair, I will sometimes have patients or staff be fascinated with and ask questions about my chair. One negative interaction sticks out from medical school. While rounding on one of the medical floors with the full medical team, a hospital staff member not affiliated with our team made the comment, “Looks like they are taking patients on rounds now.” He assumed that I was a patient because I was in a wheelchair — not a medical student, soon-to-be physician. I was quite mortified by the comment in the moment, and no one on my team corrected the staff member at the time. Later my attending pulled me aside and apologized for the staff member’s behavior. 

Jeff Mahlum via Instagram

The Med School Challenge

According to Okanlami, doctors are plagued by fears that arise from their lack of specific knowledge and experience with disabilities. Okanlami was a medical student himself when he sustained a cervical SCI. He is uniquely positioned to speak from personal experience about the med school experience. He openly admits that prior to his injury, he held some of the same misconceptions and fears that lead to substandard treatment for disabled patients. In his frequent talks to med school students and professors at universities, he begins with his own confession, establishing an atmosphere of humility and grace, and putting his listeners at ease by relieving their fears and feelings of guilt. 

“Doctors are used to being in control and knowledgeable,” he says. “Not knowing what to do in an unfamiliar situation [with a patient] exposes their ignorance and feeds their fear. They don’t want to admit their lack of knowledge about ADA accommodations because that would be an acknowledgement that the [medical] system is inaccessible.”

He advocates embedding more disability information into medical school training “to equip them, give them language and knowledge of how to treat people with disabilities successfully. We need to provide the tools for medical schools. Every single patient has some kind of disability, or will have. But to focus on only the most disabling conditions [like quadriplegia] misses the point, which is to treat every patient the same.”

He discusses what he calls “the plague of lower expectations” — the longstanding bias of the medical model that pervades mainstream attitudes toward disability. Medical students and professors “need to be exposed to the social model: If [disabled people] are given access, we can demonstrate success. ‘Special needs’ is not what we are talking about,” he says. “I don’t think our needs are special. Needs are the same for everyone, but how [doctors] provide access may vary from individual to individual.”

When he speaks to others, he is careful not to focus exclusively on his own experiences as a wheelchair user. “I introduce them to other accommodations that people with different disabilities use, like eyeglasses, doctors using high-powered microscopic tools, or stools to sit or stand on. There are also neurodiverse ways of thinking, processing and learning. I am trying to normalize the fact that everyone is different, that we are all individuals, no different from broader disability issues.”

Okanlami wants students and professors alike to adopt a new way of thinking about not only patients, but humanity at large, and to acknowledge that humanity is not perfect, including doctors. From his work, he now has mentees at numerous medical schools who are also opening up conversations about disability, including The Ohio State University, Yale University, Penn State University, Stanford University, Johns Hopkins University, Duke University, The University of Texas and, of course, University of Michigan. 

Okanlami has shared many discussions with Susan Havercamp, a health care researcher at The Ohio State University Nisonger Center, who has identified core disability competencies for med students and professors as part of the Alliance for Disability in Health Care Education. The alliance’s mission is to integrate disability content and experiences into health care education and training programs. These core competencies include situating disability within the broader context of human diversity, collaborating across disciplines to better serve disabled patients, assessing the functional needs of individual patients, teaching doctors’ legal responsibilities under the ADA, and more. Successfully integrating them into med school curricula would help bridge the knowledge gap that keeps many doctors from providing quality care to people with disabilities. 

My son, who has cerebral palsy, had an extensive orthopedic surgery in 2007. When he was getting ready to be released, he was still in a full-body spica cast. When we asked for medical transport to get him home, the doctor said he couldn’t write an order for that because he couldn’t justify the need. I asked the orthopedic surgeon who performed the surgery how I was supposed to transport him home in my Toyota Corolla. Jokingly I said, “What am I supposed to do, stick him out the sun roof or put him on top on the roof rack and strap him down like a surfboard?” I ended up refusing to take him home unless the doctor wrote the order. A day later the doctor wrote the order. But when it came time to go back to the hospital to remove my son’s cast, I had to go through the same argument with the same doctor all over again.

Judy Waite via Facebook

How To Start Changing the System

Iezzoni is convinced that pushing ADA compliance for medical equipment is achievable in the short term. She urges advocates to “put pressure on the Department of Justice to declare the ADA guidelines for accessible medical equipment as enforceable law — and enforce it! Let’s go full-bore on equipment to let providers know this will help them.” 

The approved guidelines, gathering dust since the Trump Administration shelved them in 2017, already have the force of law. All that is needed is for the current Department of Justice to take the reins and do so, and it has been moving in that direction: The DOJ recently issued a notice of proposed rulemaking that would have the effect of making these guidelines enforceable (see sidebar below). 

Changing the culture of medicine will require longer-term thinking. Iezzoni suggests advocates put pressure on Congress to ratify the 2006 U.N. Convention on the Rights of Persons with Disabilities, which was signed but never ratified by the U.S. The convention situates disability within a human rights rather than a civil rights framework. Pushing to finally ratify this important treaty — the U.S. is one of only eight countries in the world that have yet to ratify it — could create an opportunity and momentum to push policy grounded in a more inclusive, social model of disability. “It could also energize efforts to improve the health, daily lives and dignity of Americans with disabilities,” Iezzoni says. 

Forcefully advocating for med school core competencies is every bit as important. Iezzoni also suggests holding doctors accountable with licensure requirements for annual recertification. “They must have continuing education requirements and documentation to have their license renewed. Unless you have some disability competency training, you will not get your license renewed. Continuing ed is especially important since it includes risk management quality-of-care issues.”

Our most important tool, though, may be our own stories. Lagu has direct experience in the broader arena of pushing a national agenda. “We have done it before,” she says. “Take a look at LGBTQ+ people — the culture and attitudes have changed tremendously in the last 20 years. Back then you would not ‘come out’ on an application. In 20 years, I’ve seen it go from fear and rejection to acceptance. All kinds of changes, big and small. When we see images and hear people’s stories, it can change the way we feel about people.” 

Lagu says we must get our first-person stories into the hands of people who are making decisions. “With disability, we are ‘othered.’ It is our job to advocate for acceptance and respect. We also need to address physical barriers, adequate medical training, all of this is needed. Tools plus empathy. … The idea of universal care can help remove the stigma of otherness — and we all need quality health care.”