Today is World Down Syndrome Day, a day for raising awareness and funds to support individuals with Down syndrome, their families and carers. With appropriate health and education services and the right support and opportunities, people with Down syndrome can look forward to long and fulfilling lives. We hear from Maddy, sister to Ben and long time supporter of Down Syndrome Victoria.
On Saturday my brother Ben, who has Down syndrome, met Arnold Schwarzenegger.
To say Arnie is Ben’s hero is an understatement. Not a day goes by when Ben doesn’t interminably chant Arnie’s name or interject at random with the words “Terminator” or “Predator” — actually, these are timely reminders that a Schwarzenegger movie marathon is probably (definitely) overdue.
For years now, friends and family have followed Ben’s love affair with Arnie with enthusiasm and support. I once wrote a letter to him on Ben’s behalf, detailing the profound effect he has had on all of our lives.
Aside from being his favourite action hero, Arnie has wielded a positive influence on Ben’s vocabulary and conversation skills, he’s also inspired him to stay fit and strong. Ben works out at the gym twice a week to get big muscles “just like Arnie”.
When the news spread that Arnie would be in town to attend a special event for Futsal Oz, we jumped at the opportunity for Ben to finally meet his idol. Many were brought to tears upon hearing his dream had finally come true.
While Ben was a little startled by the experience, Arnie greeted him with warmth and kindness as they shook hands (and compared muscles, obviously).
This year is a big year for our family. Not only has Ben met Arnie, but he will soon turn 30. It’s also the year we’ll learn about the delivery of the National Disability Insurance Scheme (NDIS), which will effect his care for the rest of his life.
Ben brings people together. He incites compassion and understanding like no one else. But this is not his purpose.