Closing health equity gap requires commitment to affordable and culturally responsive health care – The Kresge Foundation

The dichotomy of the disability community contributes to its rich complexity. Some folks are born into the community, others join it after decades of life. Some folks are exalted as inspiration porn by their nondisabled counterparts while others are demonized and invalidated, accused of falling victim to their own shortcomings. Some folks are loud and proud about their disability while others distance themselves from the community due to internalized ableism. Regardless of a person’s history or station in the community, we are all united by a common plight: navigating a health system that prioritizes profit over disabled bodies.

Roughly a month before my 21st birthday, I discovered my place within the disability community. Multiple EKGs, heart monitors, blood tests, specialist visits, an echo, and a cardiac MRI led to a diagnosis of several worrisome arrhythmias. My experience navigating the health care system as a white woman with health insurance displays the complex intersection of marginalization and privilege.

On the one hand, my position in society as a young woman impeded my access to care. For months, I had complained of troubling heart symptoms: prolonged lightheadedness, extreme spikes in resting heartrate, and frequent dyspnea. Despite a family history of heart issues, my complaints were written off as anxiety. I was prescribed therapy and exercise as opposed to a cardiology referral. My care team explained that many young women experience anxiety, and a referral would result in expensive tests that would likely reveal nothing.

For months, I went about my life trying to ignore the debilitating cardiac symptoms, but then something miraculous happened: an unexpected surgery led my family to meet our insurance deductible. Empowered with the knowledge that my healthcare was 100% covered for the remaining two months of the year, I requested the cardiology referral. As predicted, this did lead to a myriad of expensive tests; however, the results revealed that my symptoms were not simply a manifestation of female hysteria but a multitude of arrhythmias.

I am thankful to be in a place where my disability is effectively managed by medication; however, reflecting on my medical journey fills me with dread. My story is not unique. Countless folks with marginalized genders have shared their experiences of invalidation by medical professionals. Misogyny is compounded by white supremacy which increases the barriers to proper medical treatment for women of color, specifically for Black and Indigenous women.

The privilege of health insurance is key to my journey as well. Without access to primary care, I would not have received the pivotal cardiologist referral that led to the diagnosis and treatment of my disability. Over 37% of adults with disabilities in the United States lack access to preventative care due to cost. In a health care system that values profit over lives, the disability community often bears the burden.

Closing the health equity gap for people with disabilities and other marginalized communities requires an active dismantling of white supremacy, ableism, and the patriarchy. Through intentional commitment to affordable and culturally responsive health care, we can create access that improves the health and quality of life for those traditionally left behind.