There should be something comforting about the repetition and familiarness of a routine. There should be a sense of understanding—the parking ticket spit out as you enter the hospital parking deck, or the insistent blaring of machines in the cancer center, or faint smiles of the doctors who, yet again, have no answers. When I was diagnosed with Hurley stage III Hidradenitis Suppurativa, a chronic inflammatory skin condition, my tongue had a hard time curling around this. Blood was pooling underneath my left arm. I didn't know my mother could sound like that—bordering on hysterical and choking on a sob—her frustration evident through my groggy haze. I reached out and touched the blood, flinching when my fingertips were stained red.
At the time of my diagnosis, I spent most of my time curled in on myself. I had been sick all my life. Gotten used to the burden of the word chronic. I fell into a routine of medications that I sorted through a customized pill pack. I'd become familiar with hospitals. Knew the locations of the front desk, the cafeteria, and the cafe off the top of my head. I was on a first-name basis with the receptionist at the front desk. I'd become accustomed to the medical jargon spoken over my head and had even figured out how to translate the results of my lab tests through Google.
My mental and physical well-being are impacted directly by living under capitalist, ableist systems. Attempting to access my medication as a 20 year old navigating systems not built with disabled students in mind, it has been made clear time and time again that Georgia youth need more accessible physical and mental health care coverage.
Medicaid made it possible for me to receive my medication. A federal policy put in place near the start of the pandemic meant that all states, Georgia included, have kept everyone continuously enrolled in coverage. But now, with that ending in April, it is estimated that over 500,000 Georgians will lose healthcare coverage. Young people should not have to struggle to access physical or mental healthcare.
Sometime in spring 2020—a blurred out date in my mind between lockdowns, protests, and the loss of function in my legs—I was supposed to be shopping for my college dorm room and doing deep dives into dorm room tour videos on YouTube. Instead, I listened to my mother's voice go hoarse as she went back and forth with my care team and CVS Pharmacy. I watched her eyes struggle to meet mine as weeks passed, and I was unable to do more than shuffle my way to the bathroom. This strange routine continued until I gathered enough courage to tell her Mom, I think I need a cane.
Despite the fact that I eventually acquired a mobility aid, the weight of my loss of mobility was something I struggled with immensely. What often coincides with a physical disability is the need for access to mental health care. After all, I was a teenager who had to deal with this on top of struggles to navigate college on my own as a first-generation student and other mental health issues unrelated to Hidradenitis. But that was a struggle in and of itself due to the lack of funding being poured into mental health resources in the South as a whole, as well as a lack of personal finances to obtain mental health care.
When I was diagnosed, I remember bracing myself for my first scalp biopsy when one of my specialists entered the room. She hesitated before asking if she could pose a personal question. She asked me if, after all this time, I considered myself disabled. Mia Mingus' words from a 2011 keynote speech echoed through my head: it can be very dangerous to identify as disabled when your survival depends on you denying it.
I thought back to the last 18 years of my life, dealing with one chronic illness or another: the last year that I spent in Grady's cancer center for biologic infusion treatments, as well as the dependency on Medicaid to receive it; my mom's initial refuseful to let me buy a cane; the summer months where we worked together to prove my disability and justify my use of accommodations throughout college. I remembered the nights buried with my face in a pillow, cursing myself and my body for its inability to function. And after a heavy pause, I said yes.
IN THEIR OWN WORDS: THE YOUTH MENTAL HEALTH CRISIS
For young people in Georgia, funding, education, and safety are at the top of the list of demands to dismantle the stigma around depression and anxiety: "If schools prioritized equitable care, students would not feel the need to suffer in silence."
In addition to the challenges of the administrative process to even receive healthcare, countless systems are not built with disabled young people in mind. But we can change that. We can expand Medicaid, so more young people have access to health insurance. (Georgia has the fourth highest uninsured population of children in the country, and 47 percent of young people ages three to 17 struggled to access mental health treatment they needed.) We can work toward a more just and equitable education system—one that embraces diversity and uplifts the voices of disabled individuals. We can center community care so no young person is self-advocating alone. We can pave the way for a more inclusive future where students from exploited communities can embrace their whole selves, free from stigma and discrimination.
As we listen, learn, and act together, we can foster a space that celebrates love, triumph, and resistance—fundamental aspects of disabled folks' experiences that have long been overlooked. We can weave our visions together into a tapestry of liberation and a brighter, more inclusive future for all.
There is no way that I could accurately capture the pain, heartbreak, frustration, triumph, and care I have experienced over a decade as a disabled person in the limited time I have here. There is no way that I could carry the voices and stories of others within the community and offer systemic solutions to the very real danger posed by the capitalistic and ableist system we live under. But I will continue the work of destigmatizing my experience as a disabled person and its very real impacts on my mental health.
This essay is part of a series curated by author, journalist, and youth mentor Rainesford Stauffer. In Their Own Words: The Youth Mental Health Crisis was made possible through the sponsorship of The Rosalynn Carter Fellowship for Mental Health Journalism.