My experience with Deaf-Blind Citizens in Action
I’m Nathan Mathewson and I am a 24 year old college graduate who is deafblind through a genetic mutation called Charge Syndrome. I graduated in May 2018 with a Bachelor of Science degree in Library Science. In early April I was invited to apply for the Deafblind Young Adults in Action summer program in Washington D.C. with Deaf Blind Citizens in Action (DBCA).
I applied and was accepted as a new mentee swiftly. On June 24th me and my guide dog Neptune, a 5-year-old black lab male, took our second solo adventure across the country for a conference. The first was in 2017 when we went to Orlando for the 13th International Charge Syndrome Foundation conference. I got Neptune in the summer of 2016, which has helped me feel confident about traveling independently.
This summer’s conference has taught me how to reach out to my representatives, whether local or national. I realized how challenging it can be to summarize what issue you want to talk about so that the person you are speaking to will be interested and want to seek action on your behalf.
We had to think of an issue related to our experience with being deafblind we wanted to talk about to either the Department of Justice, Department of Transportation, or the Federal Communication Commission. I came up with a local issue at first about a specific crosswalk that I wanted to deal with but turned it into a national issue about how our country’s crosswalks are rarely deafblind friendly. My mentor Amita Srinivasan helped me with crafting our message for the Department of Justice.
During the week I communicated with other participants either through an interpreter or via text message. Over the week, we learned we have all had similar experiences as young adults with deafblindness even though our degrees of hearing loss and vision loss defer. I came to realize that learning American Sign Language would be a benefit to me personally as well as professionally as a future librarian.
Other activities we went on over the week included going to the Library of Congress, where we were treated to the first deafblind tour. This involved visual description through headsets, as it was a crowded day, along with tactile models of how the library looks and what materials it is made from. On June 28th I got to go to the Capitol building and Senate with a couple participants and some SSPs. Hunter McGowan and I got to have a meeting with the offices of our Pennsylvania senator Robert Casey Jr. as well as a drop-in with Pat Toomey’s office. We also got to observe another participant’s drop-in meeting with their New York senator.
Visiting the capital of our country is an amazing and unique experience. I got to experience some of the surrounding activity near Gallaudet University, the FCC, and the congressional buildings. I also got to experience protestors doing a sit in in the Hart Senate Building! Probably the only time during the trip my working ear hurt more than my feet.
This was a new experience for me, even if some parts felt familiar after a few summers at “life skills for those with vision loss” programs. I feel more confident in reaching out to local officials about issues that affect me, and people like me.
I’m currently job searching and hope to take the GRE to apply for the Master of Library Science in 2019 or 2020. I’m just getting started on this adventure, and I am excited for what comes next.
By: Nathan Mathewson