My mother tells the story of when I was two and she walked into Tutor Time. The door opened and every child’s head turned but mine. That led to the diagnosis that would affect my entire life. We found out I had a progressive hearing loss called EVA (enlarged vestibular aqueduct) and when my mother walked through that door, I had already lost all the high frequencies in my hearing. I received the first of two surgeries for my cochlear implants when I was three. Cochlear implants were around for 10 years by that time. This modern miracle would change the course of my life.
Immediately after my first implant, I was enrolled in the BOCES Hearing Services Infant Program. Having the implant was only the first step; now I needed to learn how to hear and speak. I remained in the BOCES program through kindergarten, but by November of that year, I had made so much progress that the decision was made to mainstream me. I was enrolled in Merrick (NY) elementary school and received a lot of support there. My mother made sure of that, but I was most uncomfortable because I felt “different.” I often felt embarrassed by having cochlear implants. As a child, I just wanted to be like everyone else, and I wasn’t. I would never wear my hair up, I fought using the FM hearing system, and I didn’t like it when the teacher of the deaf came in because it singled me out as being different. It wasn’t until middle school when I made the cheerleading squad that I slowly started to become more comfortable in my own skin and with my “disability.” I loved cheerleading, but decided it was probably best if I stopped after my sophomore year of high school when my mother, who was diagnosed with Multiple Sclerosis before I was born, started taking a turn for the worse.
My mom has been my biggest advocate from the very beginning. She was the one who made sure I got continued services and support so I could be successful in school. By then things had become more and more difficult for her. Even simple tasks became harder. My priorities turned to assisting my mother; whether it was a doctor appointment, a trip to the store, or walking the dogs.
My mother became permanently disabled in January of my junior year. My parents have been divorced since I was six and it’s always just been mom and me since. My mother has always looked out for me, and now it was my turn to look out for her. She has always been in my corner, helping to make sure that I not only succeeded academically, but socially as well. If it wasn’t for my mother’s urging from day one, I would not have had the cochlear implant surgery as early as I did and I definitely would not have had the second one at all. I’ve always looked up to my mom as my hero and when it became time to help her, there was no doubt that I wanted to do it.
My whole life has been about disabilities. It started off with mine, and now it is about both of ours. My mother has worked during my entire life to make sure I got the support I needed to be successful. I have tried to be there to support her, both physically and emotionally.
I want to be a lawyer and I want to pursue disability law. Coming from both my experience and my mother’s, there seems to be no other path more chosen for me.