By the age of 23, I had grown accustomed to the smell of antibacterial soap, waiting rooms over capacity, and physicians in every specialty. I’d mastered the art of being a professional patient. I slowly built a resistance to doctors’ offices and the usual care I received there, not recognizing the nuances of my life compared to my peers.
While most kids were playing sports or taking classes they enjoyed, I could be found daydreaming of anywhere but another doctor’s office. To most, I was the weird kid that seemed to live in a bubble. If anyone in my class was sick or a virus was going around, I was forbidden from school, so I had to stay home to manage what I could on my own. Life was spontaneous due to my ever-changing physical health, though my mom did her best to give me a sense of normalcy in very trying times.
In my younger years, my mom often took me and my cousins on roadtrips. During these excursions, we got to explore and experience new places, and my mother used the time to teach about America and humanity. These new sights encouraged me to look at the world from a different perspective, leading to a better understanding of the change I hoped to see in my lifetime that would impact generations to come.
I am a plus-sized, almost distractingly short young adult with a handful of chronic health problems. Although I used to have dark, tanned skin from days spent at the beach and features that easily expressed my ethnicity, I now bear more of a resemblance to my very white dad.
My mom moved to America from El Salvador when she was 11 years old. At 20, she was married, planning for her first child, and an official American citizen. But there was still a lot about American culture that she could not reconcile in her mind. While her peers rushed to do the doctor for every ailment, my mom stuck by what she had been taught as a child: there are only three ways to treat illness–lime juice, Vick’s Vaporub, and prayer.
She deviated from this belief only a handful of times. Her main complaint was almost always pain. She would make doctor appointments only when the pain was too bad to do much else other than lay in bed. They ran tests she couldn’t afford that always came back normal. The doctor would shrug, saying, “some people just have bad backs,” and send her home.
My mom found all kinds of excuses to explain the unhelpfulness of the medical world, from money to time constraints, refusing to look at the most obvious reasons. Discrimination. Racism. Medical neglect.
I still remember my first visit to the Lincoln memorial. Watching the diverse group of people buzzing throughout the monument while learning about the men and women who changed this country at its core left an impact on me. These trips encouraged me to pursue a life of integrity and valor. I learned a lot about civil rights and history, but somehow skipped the course on how her very existence could make her feel inferior. This turned out to be the topic I’ve become the most passionate and outspoken about: the challenges of receiving equal healthcare in America as a minority.
As a child, I was taken to the doctor for a host of symptoms including headaches, weakness, fatigue, and pain. Each time, the doctors dismissed my mother’s worries. It took 17 years before I received a diagnosis that could prove these daily discomforts were real. I thought, that because my symptoms had a name, I would finally be free of scathing doctors and shrugged shoulders.
But it didn’t end up that way.
Life-saving medications have been withheld, simple tests denied, and skepticism laced through conversations. Every medical interaction feels less like an appointment and more like a trial wherein I have to “prove” that I really am sick. If I can’t make my case, I could die at the accusatory hands of modern medicine.
My stories of neglect are raindrops amongst a hurricane. A quick search online reveals a higher death rate amongst black mothers. Dig a little deeper and find medical care denied to immigrants and anybody incarcerated, a population which is comprised mostly of colored individuals. Even doctors themselves are less likely to be hired based on their ethnicity, and a portion of medical students actually believe that people of color (POC) experience pain differently and therefore don’t need the same amount of medication that would be given to their white peers undergoing the same painful medical process. It was time for a change.
Bethany and Makahla
When we connected, it was immediately evident that we had a mutual passion for dismantling antiquated beliefs in medicine.
Our initial conversations led to much bigger discussions of how we wanted to make change in the areas of healthcare and race relations. So, we began to formulate ideas on how to change the narratives surrounding these topics and how to begin getting stories like ours recognized, moving beyond the stigma that envelops the disabled community. We felt compelled to do something. So we did.
February 7th, 2019 – The first Disabled People of Color Day
We name our mini-movement Disabled People of Color Day and encouraged people to post on social media using #DisabledPOCDay. We asked participants to share five of their favorite social media accounts run by disabled people of color. This seemingly insignificant act served a valuable purpose: to show just how difficult it can be to find POC represented in what should be the most diverse community in the world. Most people did indeed have trouble finding enough accounts to post.
This was just one day. 24 hours. It will never be able to contain all of the suffering that medical racism is responsible for, or bring back the lives that were cut short by a doctor refusing to look beyond their personal racial biases. Though the past can’t be altered, it can be honored. It can shape the future.
This year, you can follow the movement on Instagram @disabledpocvoices. we are asking those recognizing #DisabledPOCDay to do more than share accounts they love. We are asking people to share their stories, amplify the stories of Disabled POC who are speaking up, or share haunting tales of those who have passed away from this neglect. Every disabled person struggles to receive good healthcare, but it’s important that we recognize the pain so many disabled POC have endured solely due to the racism that has been allowed to pump through the veins of modern medicine for far too long.