Born with Muscular Dystrophy, I never really understood why people would stare at me for more then what is the normal time to stare at someone. I would ask my parents if I have something in my face or if my skirt was up, I remember them telling me that it’s because they find me beautiful. I never questioned it again but I think I knew the reason.
Growing up in New York City and having a disability has been quite interesting because the city gives you a thick skin to protect you from going crazy. Adding a disability to the mix has helped me to be patient–patient with people that don’t know me. When people stare at me now I just stare back from my chair and give them a look that says, “I see you too.” Sometimes this works and they stop staring. But, other times they seem to still find it surprising that I could even be riding on the same subway cart.
There was once a time where I got a text message from friends to meet them at a bar in Chelsea. I had a long day of work and needed to wind down so I agreed. I work in the fashion industry, which can be quite stressful so this was the perfect opportunity to relax, catch up with friends and have a drink with them. Just like always though, I always get a few stares from other people. If I feel frustrated, sometimes I even ask my friends to ask them why they are staring at me. Sometimes we joke around and say that we are famous celebrities and they just want an autograph. Other times we get into serious conversations of how not many people think that people with disabilities should enjoy a beer or they have never seen someone in a wheelchair at a bar. In reality, sometimes people stare so much I feel like an exhibition or artifact at a museum. That night at the bar with my friends one lady came up to me and said, “Hey, what’s your name? I I love that you’re here!” Extremely confused I asked “I’m sorry, do I know you?” She admitted she did not but said she loved that I was at the bar because she believed (given my wheelchair I guess) that I was very brave to be there. I looked at my friends and they started laughing to help me feel good; they know that things like this always push a certain nerve in my body. I kindly laughed and replied, “ You’re very welcome,” and left. Now that took some strength for sure!
Meanwhile, in my head all I thought was “be the bigger person Jillian!” What other people don’t understand is that it’s feels a bit little rude to tell me that they are happy to see that I am brave enough to go out somewhere because of my disability. Because of this kind of experience at the bar, it feels like certain people assume someone with a disability don’t normally enjoy life like having fun with friends at bars or clubs. Of course, this is absolutely not true and my mind is blown at the thought that people think of me in this way just because I look different. It confuses me because I was never raised to believe in that sort of negative stereotype about my disability. I was raised as any New York City girl. My wheelchair doesn’t define me– it only takes me from point A to point B like any car would.
Overall, I always try to stay positive and reflect on my childhood.