When you are born different, it’s easy to stand out. Some of our local self-advocates with Down syndrome have embraced this role. They work hard to adapt to the neuro-typical way of life, and they want to be front stage.

If the world’s a stage, these self-advocates want a starring role!

So, we gave them the opportunity to do just that. It was an idea born out of a communications workshop I advocated for last summer. Why not include our self-advocates with Down syndrome in local theater? Local theater educator, Stephanie Radford, and I already knew from our communications workshop that the self-advocates have a natural flair for acting.

Read Related Post: Using Improv Theater to Build Confidence in Self-Advocates

We invited local self-advocates to a 6-week theater 101 workshop, followed by a try-out for our local theatre’s final performance: Madagascar. Each week in January and February, self-advocates learned how to be in a musical. They had to memorize a monologue and song, and perform both in front of their peers. Stephanie also taught them common dance moves found in most musicals to prepare them for tryouts and rehearsals.

To say our self-advocates were nervous is an understatement. When Stephanie asked them to read their monologue the first week after receiving one, some literally had no words. Communication skills are difficult for most people with Down syndrome, and memorizing a monologue and then performing it seemed near impossible. We have self-advocates that are completely non-verbal, and use an assistive technology device to perform their monologue. Week after week, I sat amazed as each self-advocate spoke in front of their peers; some through verbal words and others through emotion and sign.

“I recorded mine. Is that ok?” asked 21-year-old Kyle. Stephanie gave him a pass, but said he also should also try reading it in front of us. After two weeks Kyle eventually started reading off his script. You could tell that he loved to act. Still, the phone was a distraction, and I assumed he would never put it down. As usual, I was wrong in my assumptions. By the last workshop Kyle performed his complete monologue, with action and enthusiasm, from memory; no phone in sight. When I told him I was so proud of him he said “I am too!” Andy, who uses an assistive technology device, went from shaking his head and smiling at the beginning of our workshop, to adding humor to his computer voice and body language that would have any audience giving a standing ovation.

Read Related Post: Communication is Key to Self-Advocates’ Pursuit of Goals

Self-advocates received call backs for specific roles in Madagascar. This week they’ll be placed with a typical teen actor with experience. These peers will assist self-advocates on their acting journey. This is inclusion in action!

Our local theatre has never made a conscious effort to include people with disabilities in performances. With a little trial and error we’re hoping that this is just the beginning of an amazing inclusive experience. Stay tuned!

Does your child with Down syndrome participate in inclusive activities outside of school and work? Tell me how you make it work below.

Troy and I join other Down syndrome advocates across the nation to #SaveMedicaid in this mini-documentary by respected documentarian, Daniel Sheire.

The Senate just released its version of the American Health Care Act, and it’s worse than I thought it would be. 

Here’s what the National Down Syndrome Congress has to say about the new version of the bill:

“It makes even deeper cuts to Medicaid than the House version. (See http://thehill.com/…/338978-whats-in-the-senate-healthcare-…) Both House and Senate versions restructure Medicaid to a per capita cap model and eliminate the individual mandate. However, they are tied to different inflation indicators starting in 2025. The House bill is tied to the medical inflationary index (since costs in the health care sector increase faster than broader measures of inflation), whereas the Senate bill will be tied to the regular Consumer Price Index. States would eventually receive even less federal funding (starting in 2025) than under the House bill, leaving states in a worse position to pick up the slack. States will immediately start to cut home & community-based Medicaid services in anticipation of the funding slow down from the federal government.