Five years ago, if you’d asked me whether I considered myself a part of the disability community, I would probably have rolled my eyes and given you a dirty look. Although I was born profoundly deaf and had two cochlear implants, I did my best to distance myself from those who claimed “disability pride.”
I have never learned sign language, and for most of my life had absolutely no interest in doing so. In noisy classrooms, I nodded and smiled vaguely whenever someone said anything I didn’t hear. I beamed when people praised my clear speech (due to years of intensive speech therapy) and told me they’d had no idea I was deaf until they caught me covertly changing my batteries in the bathroom. The more I “passed” as hearing, the better I was doing.
Passing is hard. It’s exhausting. It raises the stakes that much higher when you “let slip” that you’re not just like everyone else.
By focusing on “passing” as non-disabled, rather than speaking up and educating the people around me, I wasn’t doing anything to help myself or other people with disabilities. I had internalized the idea that “normal” was good and “disability” was bad, and, in a vicious cycle, had continued to perpetuate it.
I didn’t start to break the cycle until my sophomore year of college. I was sitting in a crowded dining hall with my friends during a rainy March evening. I hated that particular dining hall. The sound of loud voices and clattering silverware bounced off the high ceiling and linoleum floors, making it impossible to hear anything. I always asked my friends if we could go to the dining hall up the hill “because they had better food” (actually, they had lower ceilings and carpeted floors that made it easier to hear), but they always chose this dining hall because it was closer to their dorms.
So dinner usually consisted of me sitting and eating my food quietly, surrounded by my chattering pals, staring at their faces in case I managed to decipher something. Then I’d give up and wait for dinner to be over.
When my friends spoke to me and I didn’t hear them, I would try the nod-and-smile until they either got distracted by a different conversation partner or demanded an actual response. The conversations usually went like this:
Friend 1: Adjlflsjflsdjlfjdlks chicken lajdflkj rain!
Me: (nodding and smiling)
Friend 2: Costume adlafjldjkljaslkfjl?
Me: (nodding more slowly and putting on what I hope is a sufficiently thoughtful, pensive expression)
Friend 1: (more insistently) Costume adlafjldjkljaslkfjl?!?
Me: Um … can you say that one more time?
Friend 2: Costume adlafjldjkljaslkfjl?!?
(Friend 1 and 2 look at each other and laugh uproariously)
Me: (panicking quietly, then deciding they’re probably talking about Halloween costumes) Are you guys picking out your Halloween costumes already? It’s only March.
Friend 1 and 2: (uproarious laughter) Whatcha talking about?!? (look at each other and laugh uproariously again)
By March, I’d had several of these conversations and was sick and tired of them. I finally snapped.
Me: IT’S NOISY IN HERE AND I’M HARD-OF-HEARING AND I DON’T APPRECIATE BEING LAUGHED AT WHEN I’M TRYING TO HAVE A CONVERSATION.
(Friend 1 and 2 immediately stop laughing)
Friend 1: (stares down at table)
Friend 2: (mumbles) Sorry. It won’t happen again.
And guess what? It never did. That was a breakthrough moment for me. Maybe not my most well-behaved or mature moment, but I still found it incredibly empowering. I had finally spoken up and made my needs clear. After that night, it began to dawn on me that “passing” didn’t necessarily mean being happier or more confident.
That summer, I was working in a psychology lab on racial and ethnic stereotyping at Tufts University. I spent a lot of time reading up on theories about stereotyping and prejudice towards minority group members. Almost without realizing it, I began using them to explain my own experiences. One day, saturated with my new knowledge, I blurted out to my supervisor, “Could these theories apply to people with disabilities?”
She immediately gave me the email address of Kathleen Bogart, a then-graduate student with Moebius syndrome who did research on the social and psychological implications of facial paralysis disorders. The following summer, I worked in Kathleen’s lab while she helped me develop and conduct a survey on the social and personal consequences of hearing loss. That survey became the basis of my senior thesis project.
Our collaboration was the start of a wonderful friendship and mentoring relationship. Here was someone who, like me, had a disability and wanted to find a way to make the world more welcoming for herself and others with the same condition. She inspired me to do the same, and suddenly more doors opened up for me than ever before.
After graduating from college, I hopped on a 15-hour flight to Australia, where I lived for a year as a Fulbright Scholar at Australian National University (ANU). This was one of the most eye-opening times of my life. Not only did I get to explore a beautiful country and become immersed in Aussie culture, I finally experienced the joys of being part of a community of people with disabilities.
I attended Australia’s first national conference for youth with disabilities in the bustling city of Melbourne. I immediately fell in love with the city, so much so that I returned for two weeks to volunteer with two disability advocacy organizations. For Disability Media Australia, I helped film episodes for “No Limits,” a show by and about people with disabilities. While volunteering for the Youth Disability Advocacy Service, I went to a swanky bar in Melbourne to rate its accessibility (verdict: they used the accessible bathroom for storage and the counter was too high for wheelchair users to order drinks).
I joined the ANU Disabilities Student Association and attended a disability film festival that showcased different perspectives of people with disabilities from all over the world. I also came full circle and visited Cochlear Headquarters in Sydney, where the first cochlear implant was developed. Everywhere I went I made new friends and professional contacts eager to welcome me into the disability community.
But perhaps the experience that had the biggest impact on me was working on my Fulbright project, an evaluation of a mentoring program for adolescents with hearing loss. I interviewed the mentors, mentees, and program organizers to learn more about the program’s impact. The mentees, especially, made an impression on me; like me, many of them had felt like outsiders in a predominantly able-bodied society and had to find ways to overcome those feelings. My experiences in Australia helped me come to the conclusion that almost all people with disabilities can relate to the struggle to find acceptance, both from society and from themselves.
When I returned home to Boston, I had new goals in mind. I knew I wanted to raise awareness about the disability community at home and use mentoring to improve the inclusion and well-being of people with disabilities. The thing was, I didn’t know a lot about the disability-related organizations in Boston. After some online searching, I found out about PYD and was blown away by all the work they’d done for young people with disabilities in the community.
A year later, I walked into the PYD office as their new Highland Corps Ambassador of Mentoring. I’m excited to start my service year and feel very honored to be here. I look forward to coming in every day and making a contribution to this wonderful organization!