Dr. Kakara’s Story

During my residency in Neurology, a particularly challenging night shift offered me a significant moment of reflection about my interaction with a patient with an invisible disability. It was a snowy January evening in the Midwest, and I was already running late, facing a mountain of tasks. Caught in the whirlwind of medical urgency, I defaulted into the familiar rhythm of prioritizing efficiency over everything else. 

One hour into my shift, I entered a patient’s room to perform a spinal tap as part of our workup for the patient’s neurological condition. Moving quickly, I explained the procedure, assuming everything was prepared. The patient listened and then declined to consent—without giving a clear reason when I pressed. It wasn’t until the next morning that I received a letter from the patient, explaining that he had dysphasia, which required more time to process language. He expressed frustration and unhappiness with my impatience. 

I felt a jolt of shame. I had always prided myself on being patient, a good listener, and a clear communicator—previous patients had told me this, too. This moment became a profound lesson in humility and understanding. 

The Broader Context of Disability in Health Care 

Accounts of doctors ignoring patients with disabilities or making assumptions about their competence are common. Doctors may ignore patients with hearing loss, speaking only to family members. They can fail to explain the physical exam to patients with low vision before touching them. And doctors often make wrong assumptions about patient’s competence and understanding. Yet, few studies explored how those encounters affect patient perceptions of the care they receive.

In our recent Annals of Internal Medicine study, we set out to quantify how patients with disabilities experience disrespect, exclusion from care decisions, and ineffective communication while receiving care.

We used the 2017 National Health Interview Survey (NHIS), where a subset of participants was asked about their perceptions of care. Questions revolved around whether they were treated with respect, asked opinions about their care, or felt they received information in an easily understood way. We compared these responses from over 9,000 individuals with disabilities to more than 50,000 others without disabilities. We found that, overall, those with disabilities were more likely to report not being treated with respect and not being asked for opinions about their care. Nearly double the proportion of people with any type of disability reported they did not receive information in an easily understood way.

This difference was especially stark for those with vision, hearing, and cognitive disabilities, echoing existing evidence that these people fail to receive the accommodations they need during clinical encounters. Similarly, a greater proportion of people with cognitive and psychological disabilities indicated they did not receive information in an understandable way during their appointments.

Why Patients’ Experiences Matter

People with disabilities make up 28 percent of American adults and face multiple barriers to accessing care. As the population ages, the incidence of disability is only expected to increase. When patients perceive disrespect, they can become less engaged with the health system, avoiding crucial preventative care or follow-up treatments. When patients are not presented with clear information in a way that is accessible to their individual needs or preferences, it can hurt their ability to follow treatment plans.

How to Move Toward Disability-Centered Care

Our results support calls for a shift from a model that assumes people with disabilities need to change to a social model that views disability as a result of societal barriers—such as inaccessible environments, discrimination, and inadequate policies—rather than an individual’s impairment. Key steps include: 

1. More data collection on disability and patient preferences: Health systems should actively seek patients’ specific communication preferences. A person with low vision may prefer large-font instructions after a visit, while a patient with hearing loss who reads lips might request providers wear transparent masks.  
2. Prioritize effective training: Integrate competency strategies into medical education and continuing professional development.
3. System-level changes: Recognize factors that can encourage better care. Often, clinicians are pressed for time because of efficiency targets, training modules, and short patient visits. For example, primary care physicians often have 15-minute appointments to care for people with complex conditions, including those with disabilities. Consider strategies like: 
   • Extended appointment times for certain patients with disabilities  
   • Use accommodations request protocols 
   • Design care environments with diverse patients’ needs in mind
   • Develop clear guidelines for personalized patient communication 
4. Prioritize disability health equity research: The recent federal crackdown on DEIA initiatives and censoring of research grants containing words like ‘disability’ or ‘accessibility’ will only harm our communities. Research and data on health equity for this group are critical to building a compassionate health care system. 

Local Actions to Improve Care for People With Disabilities

This study is one of several studies and initiatives we have partnered on to improve care. The Penn Medicine Center for Health Equity Advancement will soon launch a disability task force focused on implementing the recommendations detailed above across the health system.

Dr. Kakara’s experience on the night shift many years ago was more than a personal lesson; it was a microcosm of systemic challenges that can and should be addressed.

Dr. Mihir Kakara is a former LDI fellow and current Assistant Professor of Neurology at NYU Langone Health. Dr. Jaya Aysola is Executive Director of the Center for Health Equity Advancement (CHEA) at Penn Medicine.

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The study, “Perceptions of Culturally Responsive Care Among People With Disabilities,” was published March 5, 2025, in Annals of Internal Medicine. Authors include Mihir Kakara and Jaya Aysola.

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Authors

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