Approximately one quarter of adults in the United States, representing over 70 million individuals, live with some type of disability, making People with Disabilities (PWD) the largest minority group in the nation. Despite decades of federal disability civil rights laws mandating equitable healthcare, PWD continue to face significant barriers in accessing the care they need. These hurdles persist due to a combination of insufficient medical education on disabilities, a lack of awareness among healthcare providers about their legal obligations, and systemic ableism ingrained in the medical field.
A striking revelation from a study of over 700 physicians in the United States found that more than one-third of these medical professionals reported knowing "little or nothing" about their legal responsibilities under the Americans with Disabilities Act (ADA). This lack of knowledge contributes to inadequate accommodations for PWD within healthcare settings. For instance, fewer than half of the surveyed physicians who treated patients with significant mobility limitations consistently used accessible examination tables or chairs.
Dr. Carol Haywood, PhD, highlighted a critical issue by stating that medical schools are "failing to educate students regarding disability." This gap in training perpetuates ableism and leaves future healthcare providers ill-equipped to address the needs of PWD. A recent study published in the Journal of General Internal Medicine focused on these deficits within medical training and emphasized the unwillingness of educational institutions to take corrective action.
“Thinking about disability only as an individual problem situated within a particular person perpetuates the idea of ableism — the process of assigning value and worth to a person based on body structures and functions and what people can do with their bodies.” – Haywood
PWD often find themselves spoken to in a patronizing or infantilizing manner by healthcare providers, or worse, are not addressed directly at all. This behavior underscores a broader issue where PWD are frequently referred to as a "forgotten minority." Dr. Rex Marco, a professor of reconstructive spine surgery and musculoskeletal oncology who lives with quadriplegia following a bicycle accident, emphasizes the need for better communication skills among physicians.
“It’s important for physicians to treat people not as diseases or disabilities but as human beings who have those diseases or disabilities.” – Marco
Dr. Leslie Rydberg, an associate professor at the Feinberg School of Medicine, leads a program focused on disability. She advocates for physicians to be proactive in identifying and addressing suboptimal accommodations in their work environments. This includes examining workspaces, parking garages, entrances, elevators, and exam rooms for accessibility.
The ADA, instituted in 1990, prohibits discrimination against PWD, yet disparities persist more than 30 years later. Dr. Iezzoni has urged physicians to adopt a more inclusive approach in their practice by engaging with PWD as partners in their healthcare journey.
“Listen and try to partner with PWD, who will often know more than you do about their condition — especially people with rare conditions that cause the disability. Try to collaborate and work together to achieve goals the patient might have.” – Iezzoni
The ongoing discrimination extends beyond patient care and affects medical students and physicians with disabilities themselves. Dr. Iezzoni noted that despite the ADA's long-standing presence, discrimination remains prevalent in healthcare.
“Disturbingly, more than 30 years later, PWD continue to face hurdles in obtaining equitable healthcare and there’s still discrimination against medical students and physicians with disabilities.” – Iezzoni
Effective communication is key in improving healthcare outcomes for PWD, as emphasized by Dr. Kripke. He pointed out that patients often become passive due to being overlooked by healthcare providers who favor speaking to caregivers instead.
“You may not always get the information you need,” – Kripke
“But patients will try harder to communicate if they realize you’re serious and listening because they’re so used to physicians not listening and speaking only to the caregiver that they give up trying to communicate.” – Kripke
Dr. Marco recounted a personal experience highlighting the importance of attentive communication. When faced with a malfunctioning ventilator tube, his initial attempts to get assistance were ignored until he finally received help from a therapist who took the time to understand his needs.
“I mouthed the words, ‘Get help!’ and finally she ran and got someone. The next therapist read my lips and immediately found and fixed the problem in the ventilator tubing.” – Marco
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