I was born with Ullrich, a rare form of muscular dystrophy. At the time of my diagnosis, I was the only known person in the state of South Carolina with my disease and No. 96 in the world to be diagnosed with it.
Ullrich muscular dystrophy affects the skeletal muscles, which help us move. I’m able to walk for a short distance but only with assistance. I use my wheelchair to travel long distances and be more independent. The disease affects my lungs the most, so I have to use a BiPAP machine to help me breathe while I’m asleep.
Although I have my challenges, I never feel like my disability makes me suffer. Society often tries to make me think my disability is a curse, but it’s my norm — and I wouldn’t change it for anything in the world.
I know I’m a queen on wheels.
To truly get to this understanding, I went through many trials and tribulations in my 22-year-old life. I’ve been bullied for having a disability for years, literally since middle school. Back then, the kids my age never really understood how to interact with a disabled person. Instead of trying to get to know me, they did what they felt best: bullying. The bullying hurt because I was just a child trying to find myself and make friends. People would tell me that kids are immature and don’t know any better. I grew up thinking that when I got older, people would be more open-minded about disabled people. I was wrong. Adults can often be way worse.
Adults will say they are mature but laugh at disabled people for just existing. I have encountered many people my age who were immature and close-minded about my disability. In turn, adults often practice ableism by making jokes, befriending me as a “good deed,” making harsh comments about how I look and the way I’m shaped, and telling me I’m a burden or an embarrassment.
I always say that nothing is more hurtful than people telling me, “If I was you, I would kill myself.” Many able-bodied people would view that as saying I’m strong. But what it sounds like that person is saying is that because I am disabled, my life is not worth living.
I would be a liar if I said these comments didn’t get to me, because they do. It especially hurts when these comments come from people within the Black community. I realize most Black disabled people tend to be overlooked, and we become more of a joke instead of being accepted. We are rarely given the option to be understood.
Seeing this made me realize that it was time to speak up for not only myself, but also for other Black disabled people. Being a Black disabled person has its barriers because we face racism and ableism, and that’s not even taking other identities into account.
I started using social media, mostly Twitter, to educate and bring awareness. I wanted able-bodied people to understand that just because someone is disabled does not mean they’re less valuable or worthy. I speak passionately about how being disabled does not make anyone less beautiful or less desirable. We should not have to pick between being beautiful or being disabled.
We are both.
The true meaning of beauty is knowing it comes in all shapes and forms.
Since I’ve started being a more outspoken advocate for people with disabilities, many Black disabled people have said that seeing me use my voice has helped them have a voice and be heard.
Last summer, when I saw the difference I was making, even with something small like posting a tweet, I started my own blog called Disabled Beauty to continue to bring awareness by giving more insight on my life as a Black disabled woman. Since I’m an artist, I made sure to focus on Black women in wheelchairs because it is so rare to see them in art.
When I grew up, I did not have examples of representation of Black and disabled people, so I decided to step up. And I’m not going to stop here — I know I will be a model, start my own organization and use my degree to help more Black disabled people be heard, seen and respected as beautiful human beings.