Uncovering Healthcare Injustices: Recognizing People With Disabilities As A Population With Health Disparities

Independence Care System (ICS) Manager, Advocacy Programs and Initiatives Marcus Johnson reflects on the National Institutes of Health (NIH) officially designating people with disabilities as a health disparities population.

In the history of the National Institutes of Health (NIH), stretching back to the 1880s, it is disheartening that it took until 2023 for this esteemed institution to officially acknowledge what should have been apparent long ago – that people with disabilities are a population deeply ensnared in health disparities.

This overdue recognition marks a turning point, as it compels us to delve into research aimed at better understanding the complex web of factors contributing to the glaring health inequities faced by this often-overlooked demographic. NIH’s recent designation signifies an acknowledgment, particularly when we consider that the NIH has previously designated other minority groups based on race, ethnicity, and gender. Notably, many individuals within the disability community often belong to these intersecting minority groups, which underscores the pressing need for such recognition.

Yes, the term “disparate” accurately characterizes the healthcare landscape for people with disabilities, who have struggled for equal access and representation. According to a CDC report, one in every four U.S. adults, equivalent to 61 million Americans, grapples with a disability that significantly affects their daily lives. Factors such as disparities in healthcare delivery, individual behaviors, socioeconomic inequalities, and physical infrastructure challenges have combined to create a stark and unsettling reality for this population. The recognition of people with disabilities as a group with health disparities is a critical milestone that might have been delayed had it not been for the tireless efforts of vocal advocates within the disability community. Their dedication and commitment to highlighting the unique challenges and health disparities faced by people with disabilities have not only brought attention to this issue, but also redirected research funds to address these specific needs.

COVID-19 shines a light on the marginalization of people with disabilities 

As a Black African-American with a physical disability, I was not surprised by the revelations of the 2018 National Health Interview Survey (NHIS), which underscored the systemic issues of racism and ableism directly contributing to the widening health disparities experienced by minority individuals with disabilities. It is evident that the discrimination faced by racial and ethnic minorities is intertwined with the challenges confronting people with disabilities in their pursuit of healthcare.

Within the disability community, discussions about medical appointments have often been accompanied by ironic humor. Questions about weight, the appropriateness of conducting examinations while in a wheelchair, the absence of assistance for transferring to examination tables, and the unavailability of vital medical equipment – like elevating and descending examination tables or hoyer lifts – have become routine. These are the overtly discriminatory experiences that have fueled the heightened risk of unmet healthcare needs for people with disabilities, as highlighted in the 2018 National Health Interview Survey.

However, it was not until the emergence of the COVID-19 pandemic in 2019 that the profound marginalization of people with disabilities came into sharp focus. As healthcare organizations scrambled to locate and allocate resources for people with disabilities, it became evident that they were not adequately accounted for. The grim reality was that as death tolls surged, individuals with more significant disabilities were often left behind, their lives deemed less valuable. This chilling practice revived the specter of early 1900s eugenics, where the question of who qualified as “desirable” resurfaced, favoring, “nondisabled, white, straight, and cisgender individuals.”

NIH’s designation a step in the right direction

Undoubtedly, NIH’s designation of people with disabilities as a population with health disparities marks a significant stride in the right direction. Addressing these deeply ingrained issues, however, will be a formidable challenge, as attitudinal barriers within the medical profession persist. In October 2022, The New York Times published an eye-opening article, titled “These Doctors Admit They Don’t Want Patients With Disabilities,” exposing the harsh realities of how some physicians view and treat individuals with disabilities. This revelation, while shocking to some, came as no surprise to the disability community, which has long borne the brunt of healthcare inequities and a lack of equal access.

NIH’s research endeavors in this realm are poised to uncover more explicit biases, but overcoming these biases is a difficult task. Dr. Lisa Iezzoni is the Harvard professor living with a physical disability who spearheaded the study detailed in The New York Times that offered a glimpse into the prejudices held by medical professionals. Conducted through three focus groups of primary care physicians and specialists via Zoom, the study revealed the disheartening truth as participants gradually expressed their real feelings. Some physicians confessed to redirecting patients with disabilities to other practices, not in the interest of patient care but due to perceived legal obligations. The study also highlighted the recurring issues of inaccessible equipment and the need for better data collection to ensure equitable healthcare for individuals with disabilities. The undertone of the study was clear – financial considerations, as longer patient exams could impact physician productivity, aligning with the mindset of insurance providers.

Despite comprising over a billion individuals worldwide, the disability community remains one of the world’s most marginalized and underrepresented groups. It is no wonder that even well-established health institutes like NIH have only recently recognized the deplorable disparities faced by people with disabilities in the healthcare landscape. Hopefully, their research endeavors will prioritize including individuals with lived experiences at the forefront when quantifying and qualifying the deficits faced by people with disabilities, who unequivocally deserve equitable healthcare.

The time for a paradigm shift is now. The overt biases and complicity of entities in perpetuating healthcare inequities are glaringly evident. What is now clear: It is our collective responsibility to acknowledge, address, and rectify these disparities, ensuring that all individuals, regardless of their abilities, receive the quality healthcare they deserve.

Marcus Johnson

Marcus Johnson

Manager, Advocacy Programs and Initiatives, Co-Chair, Civics League for Disability Rights (CLDR) and Licensed Mental Health Counselor