Picture of a man in a blue sweater and a nametag

“Anyone can be an advocate”

In a guest post, Ricki and Steve Sabia talk about advocating on Capitol Hill.

“I am Steve Sabia. I am 23 years old. I live in Silver Spring, Maryland. I go to school at the Graduate Transition Program at Montgomery College. I work at Joe’s Record Paradise and volunteer at Holy Cross Hospital.”

This is the introduction Steve gave in his meetings on Capitol Hill on April 15, 2015. He spoke more clearly and confidently than he ever has before at these meetings. That is because he has benefited greatly from the Positively Speaking Workshops for self-advocates and their peers that are sponsored by the Down Syndrome Network of Montgomery County and taught by ArtStream instructor Nicolette Stearns.

The term “self-advocates” refers to individuals with a disability who advocate for themselves.

Steve also gave a paper to each person he met, which included his photo, the personal information from his introduction, and his position on a few laws. These positions were developed based on conversations we had and written in language Steve could understand.

“Please pass a strong education bill and let all students try to earn a diploma. I couldn’t try to earn a diploma because I took the alternate assessment in high school. Also, please give more funding to Down syndrome research for my health. I want to say THANK YOU for passing the federal ABLE Act. I will be happy when the Maryland ABLE program gets set up so I can start saving without losing my government benefits.”

Steve has been going to Capitol Hill for many years, especially on advocacy days for individuals with Down syndrome and their families. Most national disability organizations arrange these “Hill Days.” Steve has also accompanied me to Capitol Hill as part of my job as disability advocate. I currently work for the National Down Syndrome Congress. For example, when Steve was 15 years old he was invited by Senator Edward Kennedy to talk to Senators on the education committee about the subjects he was studying in school. Senator Kennedy understood that this brief conversation might impact his colleagues’ views about the importance of an academic education for students with intellectual disabilities.

I recently asked Steve why it is important to talk to members of Congress and their staff. He said,

“Because they make laws.”

That is exactly right. There are numerous federal and state laws that affect individuals with disabilities. However, many of the people who write these laws and vote on them have never spent time with anyone who has an intellectual or developmental disability. As a result, they often have low expectations for education, employment and independent living outcomes with respect to these individuals. The simple act of meeting someone like Steve, who has a busy and fulfilling life, can radically affect the viewpoint of members of Congress and their staff. Just the fact that he can read may surprise some of them. It is important to note, that advocacy does not require a certain ability level. Any self-advocate can make a difference. Even being present in the room and supporting other self-advocates is important. One or two words can have an impact. Advocacy doesn’t only occur in Washington DC. Self-advocates can go to the local offices of their federal legislators or their state legislators. They can advocate with school board members, county council members or even at their schools or jobs.

In addition to being important, advocacy can be fun. When asked why he likes advocacy, Steve said,

“I like to meet new people, be with friends and tell people about me.”

This year a number of his friends from ArtStream were with him on Capitol Hill: Actor Patrick Jones, Actor and Board Member Adrian Forsythe, and Co-founders Nicolette Stearns and Patricia Woolsey. In prior years, many other ArtStream actors have also been in attendance.

An annual highlight for the self-advocates is their visit with Congressman Chris Van Hollen of Maryland’s 8th District, who is a champion for individuals with disabilities and always takes the time to meet with them.

Steve and I hope this article will encourage you and your family members to become advocates or take the advocacy you are already doing to the next level!

-Ricki Sabia

Mark your calendar to donate to ArtStream on Tuesday, November 28, 2017.

We are competing for cash prizes including “Highest number of unique donors” and “High number of unique donors between 12:00 noon and 1:00 pm.”

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