Why Is It So Challenging for Disabled People to Access Healthcare?
By Arielle Dance
Visiting a medical professional for primary care or specialized appointments should be a time of comfort, resolution, and clarity; but for many people in the disability community, these appointments can be amplified by discrimination, mistreatment, and confusion. Much of these poor interactions are caused by a lack of provider or staff compassion, individual bias, or the need for additional education on providing healthcare across disabilities.
From the moment a disabled person enters a facility, they can be faced with bias or obstacles. Though most facilities seem outwardly accommodating with ramps, braille signs, and widened seating in the waiting room, there are still barriers to care when interacting with front desk staff, filling out entry paperwork, or going through preliminary triage.
Clinicians’ perceptions and healthcare equity
In the report “Physicians’ Perceptions of People with Disability and Their Health Care”, only 40.7% of participating physicians “were very confident about their ability to provide the same quality of care to patients with disabilities”, 56.5% “strongly agreed that they welcomed patients with disability into their practices,” and only 18.1% “strongly agreed that the health care system often treats these patients unfairly.”
Lack of intersectional perspectives
The report was transparent in acknowledging that physicians’ bias was not only directed toward people with disabilities but spanned across race/ethnicity, sexual expression, and sexual orientation. Knowing this, people with disabilities who are also of color or identify as LGBTQ+, are faced with intersectional discrimination that they are left to unpack.
Rachel Ungerer, a disabled artist, finds this mistreatment to be dismissive and cruel: “[this] problematic treatment from doctors has happened with almost every doctor I see regardless of the medical institution. Sometimes they also discriminate against me for being queer”. People with disabilities who are in other historically excluded groups fear stigmatization, mistreatment, and judgment without knowing which of their identities are being discriminated against.
Medical mistrust in the disability community
The report also shares that “potentially biased views among physicians could contribute to persistent health care disparities affecting people with disability.” Assuming that certain populations are looking for prescription drugs when they are experiencing pain or finding their need for in-office accommodations to be an inconvenience, these can keep individuals from seeking care when they need it most, making them less trusting of medical providers, or fearful of asking for assistance. These experiences can trickle through generations and communities, causing alarm and mistrust towards medical professionals; all of which could be remedied with increased education, open-mindedness, and additional research on care across disabilities.
Medical mistrust has been shown to lead to delays in vital healthcare like cancer screenings and primary care. People with disabilities who are turned away or feel uncomfortable in clinical settings are forced to neglect these priority screenings including pap smears, colonoscopies, prostate exams, breast exams, dental exams, eye exams, diabetes testing, vaccinations, stroke screening, and blood pressure tests. This list is only a small portion of the needs for primary care and healthy living. These do not address tests and exams that patients need for their individual disabilities and chronic illnesses.
Improving the provider-patient relationship
One way that providers can better support their patients is by clearly communicating care options with the patient directly without judgment or bias. Ungerer shared a recent painful medical appointment, where a physician denied her requests for treatment and chastised her during an appointment. However, the physician directed kinder comments to Rachel’s partner, who was in the room with her. “If [doctors] really believed I was in as much pain as I am in, they’d never treat me this badly. [It’s] the combo of misogyny and ableism. [This doctor] spoke to me as you would a child. My partner was shocked. This is normal for me.” In Ungerer’s case, this provider could have improved care by acknowledging her as the primary individual in the room and the one who understands her care best.
Disabled advocate Nico Meyering shared a similar experience of a physician being unkind in a moment of self-advocacy. Meyering, like many people with disabilities, arrived at a medical appointment with research and medical records in tow, prepared to have an in-depth conversation with his provider about what he needed. Unfortunately, Meyering was met with a provider who refused to listen to his requests, refused to read the articles brought in, and did not want to give the medical equipment necessary. After a screaming match that alerted the medical staff, Meyering’s self-advocacy paid off and the provider granted Nico a prescription for the medical equipment necessary to survive.
The lesson for patients is to be persistent and advocate for what you know you need. The lesson for providers is to listen to their patients– they have lived in these bodies and often know what they need.
Jennifer Price, a disability attorney, suggests that patients keep records of symptoms, appointments, and follow-up notes. “I advise my clients to take copious notes. Those notes should not only include what the person said about your diagnosis but also any response to your complaints of pain, the name of the person who responded, and the date. If it may be too much to write, request to record the conversation, as some states require all parties to consent. This will help when doing any follow-up consultations with that person or someone else, and it will help in the event of a lawsuit.”
People with disabilities spend countless appointments repeating their medical history to medical staff, filling out the forms with repetitive information, and educating their loved ones to do the same. Although medical providers are experts in their respective fields and have the authority to provide care, patients with disabilities and chronic illnesses are the experts in their unique bodies. When they seek care, they are wary of clinicians gaslighting them or not believing them.
Providers, we beg you to trust us and do your part to educate yourselves about treating people with disabilities. For more on this topic, check out our recap of Diversability’s conversation on disability, healthcare equity, and bias in healthcare featuring healthcare professionals and patient advocates with disabilities.
The author thanks Nico Meyering, Rachel Ungerer, and Jennifer Price from the Diversability Leadership Collective for sharing their perspectives.
About the author
Arielle Dance is a Content Writer at Diversability who identifies as a Black queer woman with disabilities. A Ph.D. in Mind-Body Medicine, Arielle is published in the Harvard Business Review and has a children’s book, Dearest One, that focuses on mindfulness and grief.
