I was born with a rare disease called Ullrich Muscular Dystrophy. At the time of my diagnosis, I was the only one in the state of South Carolina with my disease and number ninety-six in the world to have it. My disease affects the skeletal muscles, the muscles used for movement. I’m able to walk for a short distance but with assistance such as my walker or someone holding my hand. I mostly use a wheelchair to help me travel long distances and be more independent. My lungs are the most affected by my disease resulting in me having to use a BiPAP to help my lung function properly while I’m asleep.
Not only am I disabled but I’m a Black disabled woman that’s in college majoring in Psychology with a minor in African American Studies. Also, I’m a disabled advocate that brings awareness about the ableism that disabled people have to face and the effect it has on us. I always knew since I was young that by being a Black woman, I’m going to have to face many barriers in life. My life experiences help me learn that being a disabled Black woman will not result in me facing more barriers but affect how the world will interact with me.
Growing up, I had many challenges with my health due to my disease. I would often have a cold that would turn into pneumonia. It would lead me to stay at the hospital for weeks to recover. Developing a heart disease called Aortic Valve Insufficiency, which occurs when the heart aortic valve doesn’t close tightly, I would have muscle pains- that I still deal with- at times where I become too fatigued to even function during the day. Although I went through and still go through health issues, I would never consider those to be the biggest challenges I face. Ableism is the biggest challenge I have to face daily.
My experience with ableism began when I went to middle school. Abled-bodied students were curious about me since it was rare for a disabled student to be in class with them. Most disabled students wouldn’t have the choice to choose which classroom they wanted to be in; the school system automatically tries to place disabled students in special ed classes no matter if they had a learning disability or not. I knew I was out of place, but I didn’t feel bad about it until the bullying started. Every day, I would get bullied for how I looked. I was called many nasty names, one of those names was “an ugly fat crippled.” No one truly wanted to be or tried to be my friend. At that age, it hurt knowing I wasn’t accepted due to me being disabled. The bullying continued until the eighth grade and that’s when I was able to open up to my family about it. They were hurt and upset but their mind was focused on trying to make me feel better. My family told me children at that age are very immature and have a lack of knowledge of disability. They also told me that when I grow up, adults would be more understanding about disabled people since they are more mature. I grew believing that until I went to college, when I was proven wrong.
Entering college, I was excited about this new journey I was able to start in my life. That excitement left as quickly as it came. I thought college students and professors would be more mature about disabled people, but that was false. The administration never tried to accommodate me so I could succeed in my studies. Instead, they would try to convince me that switching majors would be beneficial and require fewer accommodations. Most of my professors would refuse to accept any accommodations, using the excuse that it would be unfair to the other students and sharing their personal feelings stating that accommodation is taking the easy way out. The lack of help and accommodations caused me to fail or drop a few of my classes.
Along with my academic challenges, I had dealt with toxic friendships. I learned the true meaning of friendship after disassociating myself from old friends. My old friends would only hang out with me when I was the last resort. I barely was included in any activities they participated in. Whenever I would bring up the issue, they would explain how “it was all in my head”, “I’m just being insecure because I’m disabled”, and “I was wrong accusing them of leaving me out.” For many months, I thought I was being dramatic or overthinking the situation until one of them finally told me the truth. The truth was that since I’m in a wheelchair, it was easier to leave me out because I’m a responsibility, and no one wanted to be sober to make sure I’m okay. Even though I knew the truth, it still hurt hearing it.
My old friends were not the only ones with this mindset; even the men I have dated did as well. I knew that being disabled would make my dating life difficult because when it comes to dating, people can be judgmental. Most men would communicate with me about how my disability is overwhelming. Some men would reject me because of assumptions that I was unable to perform intercourse. Some men would focus more on how people would view them for dating a disabled woman instead of their feelings for me. While dating, I have my own standards, but, in this world, having standards while being disabled is seen as going overboard. By that I mean that doing the bare minimum is enough to form a relationship with me, but when I refuse the bare minimum, they would try to make me feel bad about having standards and say I’m “too picky” for a disabled woman.
My many experiences with ableism took a toll on my mental health because I never understood how my existence is viewed as abnormal or wrong. The interaction I would have with abled-bodied people and the comments they would make would be hurtful. Many strangers would often tell me that if they were me, they would commit suicide. I understood that when people said that, they viewed me as strong for enduring my situation. But they fail to understand the meaning of what they said: since I’m disabled, my life is not worth living.
The ableism had me in a state in which I felt ashamed of who I am and my life. As I stated before, I knew I was out of place. That was no secret. I just didn’t think it would have such a negative impact on my life. I started feeling my existence was a burden. I decided to go to therapy to be able to deal with my emotions because my disability wasn’t going anywhere, and I needed to relearn how to live with that.
After many therapy sessions, I had to understand that my existence was not a burden and it’s very much needed. All my life I have been disabled. The experience of being ashamed of my disability came from realizing how people viewed me, not from my feelings. I realized that being disabled is my norm, and I shouldn’t feel the need to separate it from who I am because we have been inseparable since birth. On the days I am not facing ableism, I’m happy with who I am. I had to learn not to let people’s views of me affect how I see myself.
Nila Morton is a college student majoring in Psychology. She identifies as a black disabled woman with a rare form of Muscular Dystrophy called Ullrich. She is a disability advocate who fights to make sure disabled people, specifically black disabled people, are heard. She is also a model, which she considers one of her biggest achievements in breaking barriers to show that being disabled can be beautiful. Her plans after graduation are to continue modeling and possibly go to graduate school to further her education in Psychology. One of her life goals is to become a psychologist and continue to help people, especially disabled people, find their voice and be heard.
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