By Stacy Torres
People with disabilities experience substandard medical care, disrespectful doctor-patient interactions, and persistent barriers to access. A recently published study Health matters helps explain why.
When confidentiality was afforded in the focus groups, physicians revealed personal dissatisfaction and avoidance of patients with disabilities—such as myself. Their reasons ranged from prejudice to logistical and financial barriers to treating patients with complex care needs.
While some physicians used ableist language such as “mentally retarded” and complained about “righteous” patients who demanded unreasonable accommodations and “disrupted clinic flows,” they also pointed to real structural barriers such as visit time restrictions, excessive paperwork , challenges in care coordination. , inaccessible medical offices that cannot accommodate wheelchairs, communication problems and insufficient staff knowledge and training.
I saw myself in these grievances, thinking back to my mid-20s when a distraught nurse told me I had a “fat case.” Little did I know I had Sjogren’s, a systemic autoimmune disease that causes many disabling symptoms, including dry mouth, dry eyes, joint pain, and debilitating fatigue. I need a lot of time with health care providers, especially when I have a “flare up” symptom and my body goes haywire. Once, during a flare-up, the physician’s assistant told me that I could only discuss three things during an appointment. I stood up and pressed forward with everything to cover. I try to streamline meetings by breaking down discussion points in a notebook, but I can’t help myself when I have a long list of frustrating new symptoms to report.
Despite the painful truth of the study’s findings, I am grateful for the doctors’ honesty. Bias and discrimination in health care reflect our broader culture’s disregard for people with disabilities, but they also reflect structural barriers to providing care. The study offers an important look at how the medical system continues to cause harm, but also points to key areas for reform to improve health care for all of us.
If we are privileged enough to grow old, most of us will develop a chronic illness or disability. Disability bias and discrimination harms everyone, not just those who belong to the “special” category. Improving complex maintenance benefits everyone, similar to universal design principles such as curb cut-outs that facilitate mobility for wheelchairs and strollers.
The cost of inaction against discrimination is high and increasing as our growing population of older adults with disabilities increases. Previous research has shown that people avoid medical care due to stigma and condescension from doctors, biases based on weight and age, for example, leading to poorer health and worse conditions that “appear later” due to delayed and poor quality care. Despite some recent advances in support for patients with disabilities, such as increasing accessibility through telehealth, research has shown how the pandemic has severely limited medical care for patients with disabilities, widening disparities in delayed and unsatisfied care.
To combat discrimination, we need a multifaceted strategy that includes activism, cultural change, reform and regulation, better training and education, and reliable research and data collection.
The big problem is cultural. The structure of our communities, workplaces, schools and health care facilities often prevents people with disabilities from becoming fully integrated. The social model of disability argues that the barriers of social structure make people with disabilities increasingly sick and isolated over time, compared to the medical model of disability, which defines disability based on individual differences. As someone who studies aging and neighborhoods, I often consider how the lack of public transportation, safe sidewalks, nearby medical services, and essential businesses like pharmacies and grocery stores make life unnecessarily difficult for disabled seniors who are aging in place.
Our medical system is the result of these societal failures, which create the conditions for under-inclusion in health care. One long overdue step is the requirement that all healthcare professionals be trained in disability competency training programs. Such documentaries as Crip campThe film, which tells the story of disabled teenagers in the 1970s who attended a summer camp that fostered their development and seeded future activism, should be required viewing for first-year medical students. Insights from medical sociology into ‘patient work’, ‘illness narratives’ and ‘patient experiences’ also provide important insights to help medical professionals break away from deficit systems and recognize the contributions of disabled patients in collaboration with providers. care
Diversification of the health care workforce and increasing representation of medical professionals with disabilities holds promise for improved education and patient care. We will only address the lack of disabled mentors in medical education by lowering barriers to entry into health care fields and promoting retention through necessary accommodations, reducing workplace discrimination, and eliminating career advancement penalties for disclosure.
We need a cultural change in medicine as well as guardrails to protect patients and their access to healthcare. Eliminating all bias is impossible, but we can take steps to minimize the damage.
One key area of reform is increased time with health care providers. Fifteen-minute appointments don’t allow enough time to address multiple needs, stressful interactions, and compromising provider-patient relationship building. This system works for few. Does anyone want to see a doctor urgently?
Understaffing also undermines the complex care needs of patients, with healthcare workers overwhelmed with paperwork and administrative tasks, increasing caseloads, and lacking sufficient time to assess and treat patients. Last fall, a 10-week strike by Kaiser Permanente Northern California mental health workers prioritized finding solutions to these problems, leading to a new contract that gave therapists two extra hours a week to respond to emails. letters and perform other tasks related to patient care coordination. initial consultation hours for children in distress, Kaiser has committed to hiring more therapists.
Increasing Medicare and Medicaid reimbursements would also help cover some of the out-of-pocket costs for equipment, such as wheelchair-accessible scales and adjustable exam tables, that many medical facilities still lack.
Finally, by not collecting more data on patients with disabilities, we will remain unaware of disparities in treatment and health outcomes. As said Dr. Tara Lagu, one of the study’s authors: “We have data on racial disparities because health systems are forced to collect data on race.” Audit investigations can also help uncover discriminatory behavior.
If we don’t commit to a variety of strategies to combat bias and discrimination based on disability and other identities, we are cheating our current and future selves of reaching our full potential and achieving true health equity. As medical sociologist Irving Zola perceptively wrote about acknowledging the “bodily difference” of aging, chronic illness, and disability, “Acceptance is the acceptance of one’s inevitable part.”
