Author: Emily Denholm, ds-connex team member

“Someone needed to say something about disabilities,” says Deborah Tomai about the inspiration behind why she wanted to participate in TEDxMcAllen as a speaker. Deborah is the co-founder of the Rio Grande Valley Down Syndrome Association and proud mother to Benjamin, who has Down syndrome. “I sent in a video to TEDxMcAllen about what I would want to talk about. After that, they contacted 18 of us to tell us we were selected to speak.”

One of the hardest parts for Deborah was deciding on what to share. “I think it is very challenging to represent a community,” she shares. “If I’m going to get up here and represent parents of children with Down syndrome, that is a lot of responsibility. I was conscious of not wanting to let anyone down or misrepresent anything. I wanted to be authentic.”

Deborah put together a list of things she wanted people to know about Down syndrome and she spoke with others in the Down syndrome community to get their thoughts. So how did she narrow her list down? She asked herself practically “What do I want to change in the Valley community?” Her answer boiled down to three universal concepts: Welcome, Respect and Include.

“Presume competence,” she advises. “I want people to expect that my son Ben can do something and if he can’t, then adapt it to him. If he wants food, I want people to ask him first, not me.” She also wanted her community to welcome individuals like Ben. “I felt if I was going to talk about Ben’s birth story, welcome is a big part of that. If Ben is going to see this talk someday, I don’t want him to see it and feel bad. I wanted to be very clear that I love him and I wanted to have him.” As Ben continues to grow, the topic of inclusion will continue to be a part of everyday conversation. “We want Ben to be included in church and school. These are things that are important to me. As I made my list, this is what came together.” Click the image below to watch Deborah’s TED Talk.

After her presentation, one of the speakers who had heard her speech before in the practice sessions approached her. The individual explained that they had a friend who has a son with Down syndrome. The person shared with Deborah, “I always feel awkward when he comes over; I’m not sure how to interact with him. I just had him over the other day and I made a point to talk to him and show him my art. Your speech changed my perspective.”

This type of response is one Deborah hopes many others have after watching her TEDxMcAllen talk. “I hope that they would take away that a person with Down syndrome is a person first and that they should treat them accordingly.” And for Ben, when he is old enough to watch the presentation, she wants for him “to look around his community and feel welcomed, respected and included.” Deborah and RGVDSA desire for Ben and every self-advocate to have full inclusion and acceptance be the norm in society. So much so, that Ben would ask her, “Mom, why did you need to deliver this talk?”

If you’re interested in more TED Talks, Deborah recommends watching self-advocate Karen Gaffney and her talk “All lives matter.”