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Spring 2005 Table of Contents
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Sharing My Story With Those Who Need to Hear

By Denise Sewell, Deafblind Family Leadership Participant, Gilmer, TX

Abstract: One parent shares her experience in learning to advocate within the legislative process

Keywords: Family, blind, deafblind, advocacy

This past year, my family began working with the Texas School for the Blind and Visually Impaired–both with the Outreach Department and with the Summer Program. After seeing a remarkable change in–“Blu”, my child who is deafblind, I became convinced that it was important for people in decision-making positions to hear my family’s story so they could make the right choices for children with visual impairments. After all, haven’t we all been told that it is really parent advocacy that makes the biggest difference? It was time for me to step up to the bat, so to speak, and begin advocating myself. I started looking for opportunities and boy did I find a lot of them! The first time I decided to try my voice out was by participating in a Capital Day, sponsored by the Arc of Texas. As luck would have it, I found out that there were a group of parents from the Longview area that had chartered a greyhound bus to attend and that I could join them if I wanted to. I thought this was a great way to handle that long 5-hour drive to Austin AND meet other parents with disabilities who lived in my own back yard. A winning situation all the way around! During the drive, I found out that the primary message most of these parents wanted to deliver to legislative representatives was to decrease the waiting list for the Medicaid Waiver programs. Some of these parents were seasoned pros in talking with legislative representatives so I was sure to get as many tips from them as possible. Some of the tips they shared were:

The experience was an eye opener when I realized how many people with disabilities and their families were being affected by the decisions being made at the capital.

After I had the Capital Day experience under my belt, I felt more confident and prepared to advocate for children with visual impairments in a more formal way. When I was asked if I wanted to testify on my son’s behalf to the Senate Appropriations Committee for TSBVI legislative appropriations hearing, I jumped at the chance. On the way to Austin on February 8, 2005, I thought a lot about what the TSBVI Summer School Program and Outreach meant to me and my child but also what they meant to many other families and children. I had living proof that their services really work and that was my testimony to the committee. To go in front of these people and pour out my heart was difficult to say the least. But if parents do not speak up for our children then no one else will either. The committee members really listened with open hearts and minds and truly cared what my story was. I do not know if my testimony made a difference or not but the heartwarming experience it gave me was unbelievable!

I have every intention of continuing to be involved in the legislative process but I know that is only one way to advocate for children. Its important that we all add our voice to the effort to help people understand the important issues families with children who are visually impaired deal with. Whether it be through serving on committees, speaking to school boards, working with the media, writing letters or meeting with decision makers, each aspect is as essential and important as the others. So, I urge you to speak up and make yourself heard! You will be surprised who is listening.

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Last Revision: September 1, 2010