By Brett Kucera aka Tony Starlight
When I was introduced to Daniel, son of NWDSA board members Steve Holland and Angela Jarvis-Holland, I wasn't sure how to interact with him, because after all, he had Down syndrome. Now, I had met their elder son Quinn before (and had similar trepidation because, after all, he was a dreaded teenager) and we got on fine, but no one had warned me his little brother had Down syndrome. Not being prepared, I was left no recourse but to treat Daniel like I would any other kid. I told a few corny jokes and he laughed at some and rolled his eyes at most... just like any other kid. I rubbed his head and it irritated him but he knew there was affection behind it... just like any other kid. And after about two minutes I found him to be mildly annoying... just like any other kid.
The first time my brother put his infant daughter in my arms I was terrified. How do I hold her? Will she break if I’m not careful? There was a fear of the unknown. I soon relaxed and just enjoyed holding her and interacting with another human being. When I met Daniel the same fear of the unknown surfaced. I knew nothing about Down syndrome and didn't know how to interact with Daniel. After the fear of the unknown subsided and we began interacting like two human beings everything was great.
I think the most important thing for the NWDSA to remember is that people who aren't medical professionals, or family members of someone with Down syndrome, might not really know what it is. Of course, education is the key, but how should an organization educate? I think it’s very important to immediately remove any “victim” attitudes. Every person in the world has a unique set of challenges and it is important not to let any one of these challenges define the person. Daniel’s challenge may be Down syndrome but it does not define him.
I am honored to be involved with any campaign for educating the general public on Down syndrome. I hope as an entertainer I can help reach people with music and humor. That we can create forums where people who want to learn aren't afraid to ask questions that may seem ignorant. Where they can see and hear someone with Down syndrome speak about their experience. The NWDSA is strong because isn't just a parents’ advocacy group, it is an organization dedicated to teaching people how to treat someone with Down syndrome... just like any other person.