News

DSA Leader Speaks at TEDx

Fri, October 30, 2015 9:22 AM | Deanna Tharpe (Administrator)

Recently, one of our DSAIA members (Deborah Tomai, Board President of Rio Grande Valley Down Syndrome Association) was featured in a TEDx presentation. While an informative article can be found in our newsletter from Nov 2015, we'd like to share the complete interview that we were unable to due to space constraints in our newsletter.  

DSAIA: Where/when was your TED Talk?

Tomai: I spoke at TEDx McAllen in McAllen, TX on Tuesday, October 6, 2015.  TEDx events are independently organized in communities around the world, but they follow a strict blueprint set up by the main TED organization.

DSAIA: How did you come to get the opportunity to do a TED Talk?

Tomai: I love to listen to TED talks!  When I saw that there would be a TEDx event happening in my area, I followed their facebook page, thinking that I would try to get tickets.  When the organizers announced the theme for this year's event was "Breaking Borders", I was excited.  I sent the organizers an email to suggest that they include a message about disability.  Eventually, they asked for speaker nominations.  I asked a few people if I could nominate them, and I got a lukewarm response, so I summoned my courage and nominated myself.  I made it through the first cut and was asked to submit a short video.  I only had a few days to prepare, so that was intense.

DSAIA: What was the main message you tried to convey to your audience?

Tomai: I focused on three actions: welcome, respect and include individuals with Down syndrome (and other disabilities) in our community.

DSAIA: Tell us about the experience…standing up on stage there, addressing the crowd, being part of a prestigious group…

Tomai: I felt like a huge fraud!  My son Ben is only four years old, so I'm new at this.  I read a lot, and I've joined a ton of facebook groups, but I'm very much a learner.  Every idea that I shared comes from what I've heard and discussed with other people - the "Just Like You" video, conference speakers from DSAIA and NDSC, LOTS of blogs, and families in my community.  

When my son was born, we didn't have a local Down syndrome association, so the RGVDSA was formed out of need - I wanted to know families in real life, and not just online.  I hoped that participating in TEDx would benefit RGVDSA - that we would connect with new families, and that we could build our profile locally with local educators, medical providers, funders, etc.  The talk was scheduled for the beginning of October, so I thought it would be perfect leading into Down syndrome awareness month.

The practices for TEDx were fascinating.  We got to hear each other's ideas take form and change shape through regular speaker meetings.  The people who spoke are all doers and world-changers - two amazing Latina poets, one fellow who started his own school, a man from the colonias who now has his own fashion label in New York, a young civic activist, a Mariachi singer with a gorgeous voice, an award-winning educator, and more.  It's energizing and inspiring to talk to passionate people!

I was nervous.  I was the next-to-last speaker, so I had to wait all day long before it was my turn to speak.  But the audience was wonderful.  I got to sit with several audience members during lunch, and each person resonated with a different speaker or illustration.

My talk went well, I think.  We hadn't rehearsed in the same space, so there were a few things that surprised me with the slides and the clock, but it felt pretty comfortable overall.  I was worried about finishing on time, but I made it with 20 seconds to spare!  The audience responded generously with a standing ovation.  I wish I had taken more time to appreciate the moment, but I mostly felt relieved that it was over.

DSAIA: Has anything come of the talk?

Tomai: A neat personal moment: one of the other speakers confided in me that she has friends who have a son with Down syndrome, and she wasn't ever sure how to interact with him.  She made a point of telling me that she had invited their family over for a meal, and she gave the young man a tour and talked about her art with him.  She said that her perspective had changed, and she had made a deliberate effort to reach out to him.

I also received an invitation to be a keynote speaker at a statewide event for physician's assistants in February.  I'll be speaking to around a thousand medical providers across the state - who care for individuals with Down syndrome at all stages of life.  I'm hoping to provide everyone with resources - including links and contact info for every DSA in Texas.    

DSAIA: Should we look for it on video soon?

Tomai: That's what I hear!  They've been editing all the video feeds, and it should be ready within a couple of weeks.  I'll let you know when I know for sure.


I want to tell you what WONDERFUL time I had at the conference. I learned so much and came away with lots of ideas for our organization. -Barb Waddle, The Upside of Downs of Northeast Ohio

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