Welcome to Vibe Check, Unbothered’s wellness column aimed at revolutionizing how Black folx think about self-care, because “self-care” is not always synonymous with Black existence. A safe space for us to share our experiences, Vibe Check explores how Black people are reclaiming their time and wellness, reconnecting with their power, and fostering balance and healing in their day-to-day lives. For Disability Awareness Month, disability blogger Imani Barbarin shares a personal essay about the challenges of journeying into adulthood as a Black woman with cerebral palsy.
The end of March will mark my 33rd birthday. I can easily say I did not see myself getting this far. Yes, I have what doctors have colloquially labelled “double depression” (at the time I shouted “deuces,” but they weren’t amused), but this isn’t what I’m talking about. I quite literally did not see myself getting this far in my life. I didn’t see myself in the future, simply existing. I saw the goals I was supposed to meet, the career I was supposed to have, but as far as just existing—there was nothing I could envision.
Anyone who knew me when I was growing up will tell you that I had my sights on becoming a lawyer. As a kid, I would tell anyone within earshot all about the college tours I snuck onto when we lived in the city and the law I was going to practice. They would describe me as argumentative and eager to stand my ground on any issue, but realistically, I am correct and allowed to say so—firmly. Outwardly, I had all of the confidence of a child who knew of what was before her and the good sense to work towards them without complaint, or adopting a “disabled mindset.”
My parents, of course, advocated for me from a young age, but that advocacy matters so little when you’re a high achiever and trying to prove everyone wrong.
By age 14, I could tell you exactly what I wanted to be when I grew up and where I wanted to live—all of the grand questions that adults ask you at that age to determine who you’re shaping up to be. But, if you asked me the small questions, the ones about day-to-day living as a Black woman with a disability—the questions about how I would maintain mobility, get my groceries, get to work, access healthcare—those were the questions I found myself blanking on. I had no idea. I have no idea.
Being Black and disabled in the 90s and early aughts was difficult in that there was little to no representation for us, especially as it pertained to what adulthood would look like. Each time I would ask my parents who I could look to for guidance, they would point to Ray Charles or Stevie Wonder, and emphasize that if I worked hard enough and exhibited my talents, no one would want to discriminate against me because my value would speak for itself. My disability wouldn’t be an issue in the pursuit of my goals.
I trusted their answers, but there were just some things I was falling behind in that they couldn’t explain. I could see my peers falling in and out of love, learning to drive before me and going to parties I had to edge my way into being invited to. I wasn’t completely alone in my teen years; I had people at the time I considered friends. At the time.
I yearned for inclusion in the moments in between major life achievements, but I wasn’t to pay attention to those things; I was to keep my “eyes on the prize.”
I knew my parents meant well, but the response never seemed to get to the heart of my question and always emphasized how I was to make nondisabled people comfortable rather demonstrate how my needs were to be met. Advocacy was for the things I couldn’t do. I was raised to be a Black woman first. Don’t count on anyone else’s help but your own.
When I went to college, I was filled with the same hope the big answers provided and felt like the smaller questions would be answered later on through experience or, perhaps, osmosis.
No one tells you what it’s like turning into an adult, but that silence is particularly brutal when you’re Black and disabled. After age 18, your parents can no longer advocate like they did when you were a child, and should they try, they are treated like miscreants trying to skirt the system.
Throughout childhood, I had been deemed “high-functioning,” a label I wore as an honour, but it came with responsibilities and questions in adulthood I didn’t have the answer to.
In order to be “high-functioning,” you need things like regular physical therapy, and treatment for the cerebral palsy you were born with, but after ages 18-21 you lose access to those supports. Despite being at my orthopaedic surgeon seemingly every other month as a child, I have yet to find one that treats cerebral palsy at my big age. While I have had physical therapy nearly three times a week since I was two years old, I either need to come up with new reasons as to why insurance should cover the service or pay hundreds of dollars per week out of pocket. Apparently, you were to have been cured of your in-utero brain injury by that time, so the minute I turned into an adult I was already behind. Now, I can feel my muscles more quickly tighten, ache and cramp from the lack of treatment.
My first year of college, I was supposed to ask the university’s disability office for accommodations and a plan for my professors to help me, but I had worked so hard to achieve good grades and get into college in the first place that I shouldn’t need people to help me. I shouldn’t ask for help.
Soon enough, into my college career, every grand goal and idea I had about myself failed me, but when I began listening to other disabled people through their words and work, I felt less alone. I listened to Stella Young as to why she didn’t want to be anyone’s inspiration. I read Audre Lorde’s The Cancer Journals and how she had to relearn her own body and set times for rest.
Most of all, I grew loud. Excited by this new understanding of myself through their eyes, I wanted to share my experiences and absorb as much as possible. To talk about ways that the world was not set up for bodies wrapped in skin like mine.
The louder I got, though, the more I was accused of giving in to the stereotypes of disability. I was supposed to recognize my “difference” without making it anyone else’s problem and if I ever wanted a job in the real world, I would have to drop it. There’s no use in complaining.
A depressive episode in college caused me to drop out and regroup, so all of the answers to the big questions I had been answering since childhood had been wiped from the path ahead of me. I had no idea what I was doing until I found disabled people—disabled adults—to tell me what was in store for me. Little by little, they helped me answer the smaller questions that make up life, if not a series of grand milestones to overcome.
My parents grew up in a time in which high achievement, letters after your name, and prominence for your talent and intellect were the goal. It was understood that people were going to be racist and sexist, but every single one of your achievements would speak for themselves.
Overachieving your way out of exclusion was never the answer. My parents raised me with no guidebook in a world in which my very existence would be called into question just by stepping out of the house. They raised me in the same way that allowed them to outpace the hate that sought to hold them back, but it was my duty to myself to come into my identity as a disabled person and learn the things they could not teach me.
At 33, I no longer feel on the cliff’s edge of adulthood with no path before me. Now, I am glad to know what the moments in between hold for me and can help others find their peace in the long spaces in between goals.
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