Wednesday was the 3rd annual Down Syndrome Advocacy Day at the Massachusetts State House. The Massachusetts Down Syndrome Congress (MDSC) was requesting that members of the Down syndrome community go to the State House and help advocate by speaking with their state legislators. I wanted to attend for two reasons. First of all, what a great opportunity to be a part of something where my voice can likely make an impact and make life better for Gigi and others with Down syndrome. Secondly, there were going to be other people with Down syndrome there, young adults – the age group I have hardly any experience with – and I wanted to see them speak at the event.
All of this was well over my head and way out of my comfort zone as I know nothing about politics however the MDSC provided us with information via a webinar that was very helpful. In fact, I joke that one of the most useful pieces of information was the Power Point presentation they made that was directed towards children in case any of us were going to take our kids to the State House. Once I read that I felt like I understood more about what was going on.
There were a few things that the MDSC wanted us to lobby for this year:
- Support for funding for programs that assist individuals with Down Syndrome as well as education for newly diagnosed parents.
- An act concerning nondiscrimination of people with intellectual disabilities in obtaining organ transplants. Evidently there been a few instances across the country where people with disabilities have been denied organ transplants because it was believed that they did not have the ability to care for themselves after the surgery. And even worse, it was assumed that their quality of life was below average and therefore they didn’t deserve an organ transplant. This has not yet happened in the state of Massachusetts but there is a push to be proactive to make it against the law.
- An act creating higher education opportunities for individuals with intellectual disabilities beyond high school. Education beyond high school leads to more likelihood of jobs and therefore more likelihood of independent living.
So I found my legislators’ contact information, called the House Representative and Senator, and made appointments to speak with them. I was excited to meet the Representative, Ed Coppinger, because even though I didn’t know him personally we have a number of mutual friends. I spoke with some of those friends over the weekend and they spoke very highly of him. They reminded me that he has a brother with Down syndrome who works at the pizza place right down the street from me.
The day at the State House began with meeting up with some friends and then sitting in on a presentation where we watched members of the Massachusetts Down Syndrome Congress speak and give a few awards to legislators who have been lobbying for the rights for individuals with Down Syndrome for the past decade. Those that were honored received beautiful photos of landmarks in Boston taken by a man with Down syndrome. I also saw a number of self-advocates speak. Before I knew it was time for us to go to our meeting and the presentations were not even over yet.
Representative Coppinger was very welcoming and warm. I gave him a printout of a bio about Gigi because the MDSC stressed that first and foremost the legislators simply want to hear our story. He then told us about his brother. He said his brother is so well liked that the when the pizza place was sold it was put in the contract that Pat stays on as an employee. Now that the weather is nicer I’m hoping to take a walk down to the pizza place and visit. At the end of the meeting he said he was interested in supporting and becoming more involved in issues related to Down syndrome and he asked that if I hear of anything to call him.
My state senator was not available for our meeting however I left some information with one of his staff members. Overall it was a great day and exciting to be at the State House which is beautiful and over 225 years old. I’m so glad that we took advantage of the opportunity to attend.
Update: If you want to get involved in contacting your legislative representative, the National Down Syndrome Society has a webpage that shows updated information on recent advocacy and action.