By Caryn Rubanovich, Intern 2014

Imagine this: you’re in the waiting room of a new doctor’s office, eager to learn more about and start birth control. You’ve asked a family member to join you, and together you wait for the nurse to call your name for the appointment.

Fifteen minutes go by. Twenty minutes. Twenty-five. You’re still waiting. You notice that the nurse has called in at least two other patients who arrived after you.

After almost forty-five minutes your name is called.

You and your family member follow the nurse. She begins by asking a list of medical questions. The strange thing is that she doesn’t look at you when she asks. Instead, she keeps looking at your family member. Your family member and you exchange glances while the nurse types, and your family member excuses herself to “take a call.”

The nurse asks you yes-or-no questions, but doesn’t move her eyes from the computer screen while you answer. “Sexually active?” she asks. “Yes,” you respond. “Hmm, would have never thought,” she adds, and moves onto the other questions.

“The doctor will be with you,” she says after the final question, and she leaves the room.

After another period of waiting, the doctor enters. “I hope you don’t mind that I’ll just check you where you are,” he says. “There’s no need to worry about the exam table.” He’s in a hurry, you can tell. Instead of asking about and addressing your reasons for coming in, he proceeds to ask questions about your legs virtually the entire time (“So how long have they been like this?”), even though your legs have no relation to your reason for coming in. Finally, after numerous probing questions, you stop him and say you’re here to consider birth control options — not talk about your legs or your wheelchair.

Unfortunately, the above-fictionalized story isn’t fictional for many people living with a mobility disability — and for those with other kinds of disability or chronic conditions, for that matter. People with disabilities and chronic conditions face a staggering number of microaggressions from doctors, nurses, and others in what are supposed to be “safe” medical settings.

While one would hope healthcare professionals would be the last ones to discriminate against patients with a spectrum of disabilities and conditions, research shows that these patients are often on the receiving end of discrimination and bias from their own clinicians and as a result experience barriers to healthcare access.

Most doctors are not ill-intentioned, nor do they aim to discriminate against any of their patients. So then why is it that these patients experience disproportionate health care disparities at the hands of their providers? Don’t doctors learn about this kind of stuff in medical school?

Sadly, most don’t. Too many doctors aren’t adequately trained when it comes to serving patients with disabilities, nor are they taught to be cognizant of their own bias that stems from being able-bodied and healthy. One questionnaire sent to deans of dental/medical schools, directors of residency programs, medical students, and other health-related organizations found that 58% did not make a curriculum for patients with disabilities a high priority at their school. The study, published by the International Journal of Oral Science, also noted that while a majority of the deans reported that their graduates were competent to treat patients with disabilities, most of the actual students in training said they felt ill equipped to care for those patients.

According to the Autistic Self Advocacy Network, inadequate training contributes to the fact that “more than 54 million Americans with disabilities, including individuals with physical, mental health, sensory, environmental, cognitive, intellectual, and developmental disabilities experience inadequate health care.” Ultimately, lack of knowledge and training contribute to the symptoms of microaggressions seen in medical settings today.

The first course I took as a student of Narrative Medicine was an “Illness and Disability Narratives” course with Dr. Sayantani DasGupta (a regular contributor to Adios Barbie). Sayantani shared the training woes she had experienced while attending medical school and brought up bias she’s witnessed in medicine. Many of my colleagues, who are mid-career health professionals, and I chimed in throughout the semester, expressing our own concerns from personal experience and the experience of our loved ones. The gaps we felt in our own training prompted us to get involved in the field of Narrative Medicine. A semester of coursework and discussions surrounding ideas of embodiment, drawing from disability studies, feminist theory, etc. was exactly the knowledge my peers and I craved. As a clinician-in-training, I know that these nuanced aspects of clinical care are exactly what I need to be the best provider that I can be.

Discrimination and bias take different forms. Sometimes clinics or exam rooms are inaccessible, or clinicians provide skewed care. Other times clinicians focus on a person’s condition rather than attending to their entire health and well-being. Microaggressions are often shockingly subtle.

Some common examples are:

• “You seem fine, don’t worry about it.”
• “Maybe if you just tried harder, you’d feel better.”
• “You don’t look sick.”
• “I totally understand what you have. I have _____.”
• “It could always be worse. At least you don’t have ______, like my other patient.”

Statements like these have no place in medicine. All people deserve equal access to safe, effective and welcoming medical care.

The ADA—the Americans with Disabilities Act of 1990 — was a huge win for people with disabilities in the United States. This landmark act prohibits discrimination against people with disabilities, makes sure to integrate them into society, and ensures them equal rights in everyday activities, like seeking medical care. Thanks to the ADA and the Rehabilitation Act, medical care providers are required to provide accessible care to all individuals.

Even though the ADA was instrumental in giving rights to people with disabilities, numerous investigations done by the Justice Department reveal problems that continue to appear, time and time again. Compared to their able-bodied counterparts, people who have chronic conditions or disabilities experience inaccessible routes to doctors’ offices, clinics, and other providers, which literally keeps them from getting to the preventative medical care they deserve. It’s inexcusable for a practice to lack a ramp, a door with proper wheelchair clearance, etc. Inaccessibility is a form of discrimination. Practices should be physically accessible to all patients, otherwise they are discriminatory.

Unfortunately, when it comes to subspecialty medical care, the problem doesn’t get much better. In one study, researchers, pretending to be fictional patients that were obese and wheelchair users, called 256 subspecialty practices in hopes of making appointments. Their findings: 22% of practices reported “that they could not accommodate the patient.” Dr. Tara Lagu, the lead investigator of the study commented,

“People assume that just because we are health care providers, we are accessible to patients. But in fact, the vast majority of practices are probably doing things that if I were disabled, I would not want to have done.”

What was even more astonishing about this study was that of all of the subspecialties represented, gynecology had the highest rate of inaccessible practices (44%). This statistic is especially concerning since people with disabilities and chronic conditions are just “as sexually active as their able bodied counterparts” says Tsarai Mungoni, head of research and advocacy at the National Association of Societies for the Care of the Handicapped. Just because someone is disabled doesn’t mean they don’t express themselves sexually, or want resources and information about their reproductive rights. And just because a patient has a disability or chronic condition doesn’t mean providers shouldn’t ask about potentially risky health behaviors.

In another survey, patients who had trouble walking were 20% less likely than other smokers to be asked about their smoking histories during annual checkups. The investigators believed this might have been a result of health care providers assuming the patients had “very poor quality of life” and that it was “not worth counseling them about … ‘vices’ that could make their lives more tolerable.” Too many primary care doctors focus solely on the patient’s condition, instead of offering well-rounded care. As a result, doctors overly medicalize disabilities, even if the patients themselves don’t think of their condition as a problem or pathology. The key point is that people want to talk about their health and well being beyond their disability or condition. It’s within the doctor’s duties to facilitate and encourage those discussions.

Based off of ADA recommendations, patients should be able to expect all of these things from their providers.

Doctors and staff should not:

1. In general, examine a patient who uses a wheelchair in the wheelchair, even if the patient cannot get onto the exam table independently. It is less thorough and does not provide the patient equally effective medical services.

2. Deny service to a patient with a disability or chronic condition whom they would otherwise serve. Patients should be provided an accessible exam table, stretcher, gurney, or patient lift, or have trained staff assist the patient in transfer. (Though staff safety is important, a doctor’s fear of another staff member injuring themself does not justify refusing to provide equal medical care. This is where proper training and equipment come into play.)

3. Tell a patient with a disability or chronic condition to bring someone else along. If the patient chooses to bring someone, that’s their decision. A patient has a right to come alone.

4. Refuse to treat a patient who has a disability or chronic condition because the exam might take more time.

5. Avoid seeing a patient or making a patient wait longer than others to be seen.

6. Tell the patient “I know what you’re going through.” Even if the provider has the same condition or disability, no two people experience it the same way.

7. Make any comments about the patient’s appearance, efficacy, or experience that they wouldn’t say to any of their other patients.

Instead, doctors and staff should:

1. Ask their patients if assistance is needed, what works best for them, and what the best way to help is.

2. Address the patient directly, not the patient’s companion. Even if a patient has a disability or chronic condition, it does not necessarily mean they cannot speak for themselves or understand exam results.

3. Check in with the patient about their concerns and reasons for coming in, and make sure to address those by the end of the visit.

4. Respect the fact that patients know their bodies and sensations better than anyone else.

5. Instead of focusing on the condition or disability (unless medically relevant), offer well-rounded care like they would to any other patient.

6. Proactively seek continued education and training through local or national disability organizations on how to operate equipment, how to assist transfers, and how to position people with disabilities so that patients are comfortable.

If you are interested in finding out more, the U.S. Department of Justice ADA Information Line is another resource. Anyone can call the Information Line at 800-514-0301 (voice) or 800-514-0383 (TTY) to speak with an ADA Specialist.

Also, check out Healthcare Stories, a video advocacy tool in Disability Rights Education & Defense Funds’ ongoing campaign for healthcare justice for people with disabilities.