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A Young Adult's Perspective on Life with Cochlear Implants
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Meeting with a Legislator

Posted By Miranda Meyers, Thursday, January 18, 2018

An amazing part of our country is our ability to talk to our elected officials about legislation and public policies that affect our daily lives. It is essential for people to be involved in the law-making process of our republic.

I have spoken to staff to US Congressional members in Washington D.C. about a cause near and dear to my heart: cochlear implants. I was younger when I did it, so I listened more than I talked at such meetings. But, being present at those meetings did have an impact on my perspective about such participation. A few weeks ago, I met with State Senator Joseph Robach from Western New York about a bill he introduced to the NY State legislature.

Doing Your Homework First
I learned that Joseph Robach is a Republican senator for the 56th district of New York. His father was an assemblyman in New York as well, and Senator Robach was elected to fill his father’s seat after his death. Joseph Robach was elected to the NY Senate in 2002 and has served since that time.

Focusing on a Key Issue
I found him to be a very nice man who was very willing to listen to me about my life and perspectives. The Senator introduced a bill that I assume is related to the national LEAD-K initiative. The bill states that a panel should be established in New York to observe the language acquisition of deaf and hard of hearing children through 5 years of age. If a child is not making progress, then the panel will make “recommendations.” This panel would be constituted to include a majority of individuals who are experts in ASL, so their recommendations would likely have a sign language bias.

I spoke with my parents about this because the best way to prepare for this meeting was to think about myself and relate it to my situation. Both of my parents said they would not be happy if a group of people told them their child was not progressing the way they should and forced changes on a process that was being overseen by highly skilled professionals in spoken language development. The way this bill is structured is that it would devise milestones based upon typically hearing children and would then compare a deaf child’s progress to hearing children. In my own situation, I was not completely caught up at 5 years old. I received my first cochlear implant at two years of age, so I was two years behind at that time. If my parents had to add ASL to my language development program before I was 5 years old, I believe that would have put me even more behind since the focus would have been split between ASL and listening and spoken language. Importantly, my parents did not know ASL but they did understand how to expand my exposure to spoken English. That’s what they wanted to focus on. It’s all about parent choice.

Why the Senator Got Involved in this Issue
The group that asked Senator Robach to introduce this bill came to him because he has experience with hearing loss. His daughter is hard of hearing and wears hearing aids. He said he wasn’t sure if the bill would move forward, but he was willing to introduce a bill for the group. He also said that he was very open to amendments to the proposed bill and that it was likely that he would make changes before bringing it to the floor. He noted that another group that came to talk to him about the bill included parents of children with cochlear implants and professionals in the field of hearing loss. The senator asked if I was part of that group. I am not; I went and spoke with him because this cause is important to me personally.

What happened as a result of my advocacy?
I would say the meeting was a success! I was in there for 45 minutes when the meeting was only scheduled for 30 minutes. He listened to all of my points and I think he really tried to understand my point of view. He talked a bit about how politics is a compromise and gave examples of bills that he worked on where he had to compromise. I tried to return the focus at times, but it was difficult. He was respectful of me, and I think he was trying to make sure I felt comfortable. It was a little intimidating being alone with a long-standing politician in New York State politics to be quite honest!

I prepared quite a bit for this meeting. I read the bill multiple times and took notes on it. It is rather easy to find the actual text of bills now online. This bill is only in committee right now, but the full version was right on his website. It was not the easiest thing to understand, but I took my time with it. I also communicated with Donna Sorkin at the American Cochlear Implant Alliance via email and on the phone. We discussed what the bill could mean for children with cochlear implants and the best way to approach this meeting. Donna emphasized relating everything back to myself and my family. How would my parents feel having a panel of people that didn’t know me and my situation and progress tell them what they should do? What would my life look like had this panel been in existence when I was little? The best way to get a point across is to relate it to yourself. I know without a doubt this meeting would not have been as successful if it weren’t for Donna’s help.

Meeting Outcome
The meeting ended on a good note, and I really felt like he listened to my points. I hope he pulls the bill from committee or at least amends the bill. He seemed intent on introducing something but not necessarily the original version of the bill. I think he cares about supporting children with hearing loss. I am unsure if any version will pass. Voting will commence in January when the legislature is back in session. I will be watching closely to see what ultimately happens with the bill. I am proud I did this. I am proud I stood up for something I believe in and took the steps to do it. It was nerve wracking, but I did it.

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