Don’t give up! Don’t ever give up! I was born 36 years ago with a developmental disability. I don’t consider myself to be disabled. I was born with a challenge that my parents and I have to overcome every day. I have had to fight every step of the way to get to where I am today. You have to continue to fight even in adulthood. Now I advocate for people who happen to have a disability as the selfadvocate coordinator for my local Quinebaug Valley chapter of The Arc and The Arc of Connecticut.
I have been in my position of self-advocate coordinator at The Arc of Quinebaug Valley for about two years. My first assignment was to start a self-advocate group.
One of my first jobs on the state level was to start The Arc Self-Advocacy Panel (ASAP), a group of like-minded self-advocates from around the state to help sharpen the mission of the state organization. We have been running for about a year with about 13 regular members. We’re always looking to expand. The adult group meets the fourth Wednesday of each month. At our initial meeting we identified transportation as the biggest roadblock to successful living in the community for people with disabilities. This includes employment and leisure activities.
Change the system
Public transportation is available and affordable in urban areas, but if you live in the suburbs or rural areas, you’re out of luck. We also said that if we change the system for people with disabilities, we would change the system for all people, such as senior citizens. Members of the ASAP attended a meeting with Transportation Commissioner James Redeker to talk about our concerns.
We agreed to work together for a common goal. Members of the ASAP have had subsequent meetings with Sen. Andrew Maynard (D-Stonington), the co-chairman of the transportation committee in the Connecticut Legislature. Our most productive meetings have been with Commissioner Redeker and Department of Developmental Services Commissioner Terrence Macy together at one table for the first time. Rome was not built in a day, but we are slowly making progress.
Arts and crafts night
We have had many guest speakers come in to talk to the group on a variety of topics. We have also have had theme nights, like movie night and arts and crafts night. We have had dances and other fundraisers to have money to do other things like planning a trip to our state capitol. We had elections in the fall for officers, and I have transitioned into an advisory role. This group is a member of People First of Connecticut, and I sit on the board of directors and help with the annual conference.
My latest project is to start a youth self-advocacy group that will be targeted at high school students. This group will meet twice a month with a slightly different agenda and focus. The best way to become a strong self-advocate is to start early, and that is why I am organizing this group. I am working with the education department at the Arc of Quinebaug Valley on this project and, if successful, I will be looking to expand it into the local school system.
I would like to end with my motto. My mantra is a quote from Jim Valvano, the coach of the North Carolina State Wolf Pack who won the 1983 NCAA basketball championship and said these words at the 1993 ESPY Awards. In one of the best speeches I ever heard, he said one simple phrase that sums up what I am trying to say: Don’t give up! Don’t ever give up!