My husband, youngest son Aaron and I went on an impromptu 12-day trip to Australia in early July.
Who spontaneously jumps on a 16-hour flight from Vancouver to Australia? I guess we do.
I always have a story behind a story, so here it is.
Earlier this year, I received notice that the World Down Syndrome Congress was being held in Brisbane. We’ve been lucky to go to the Congress twice in Aaron’s life. Once in Vancouver when he was wee and then again in Dublin when Aaron was 6 years old.
The Congress is a fantastic opportunity to learn – for both Aaron and his parents. At our first Congress, when Aaron was three years old, it was heartening to be surrounded by other people with Down syndrome and their families, and to catch a glimpse into possibilities for his future.
In Dublin, In 2009, Mike and I presented about our roles with the Visiting Parents Program with the Edmonton Down Syndrome Society and the importance of peer support. We then spent a few days after touring lovely Ireland (our time in Ballymaloe was a favourite).
Fast forward to 2024. The Brisbane conference sent out a call for abstracts. Together with Aaron, we sent in an abstract for a film screening of Chicken and a panel of Aaron and his co-directors presenting about Inclusive Filmmaking. We called it ‘Beyond Mascots.’
We got word a couple of months later that the abstract had been accepted! Yeah! But then I realized we couldn’t afford to go to Australia, as the Congress didn’t fund their speakers and in fact speakers had to also pay for their own registration. Boo.
I embarked on a mission to find funding for Aaron and his team to attend. This involved doing something that I hate: asking people for money. Because it involves rejection. Lots of rejection. I asked every Down syndrome organization I could think of, emphasizing that this was a rare opportunity for an adult with Down syndrome to continue his journey of life-long learning. I was told no, no, no, no.
This was discouraging, but if anybody knows a mom who has a disabled kid, you know that when we are told ‘no’, we only dig in and press on.
Thankfully, Aaron is a Canada Council artist. He applied for an Arts Abroad grant, and in late May we found out he was successful. A stranger on the Internet helpfully steered me towards RBC’s Future Launch Scholarship grant, and Aaron received that too, which paid for the registration fees for the Congress.
Now we had to assemble the Chicken speaking team. We were bummed out that our timing was off with the bittersweet news that Lucy McNulty, Aaron’s co-star, writer, director and producer of Chicken, couldn’t go because she had been accepted to the prestigious Canadian Film Centre’s Producers’ Lab. Thankfully, I'm beyond grateful that Chicken's co-director, Emma Pollard was able to carve out the time for a quick trip to Australia.
Phew, that’s a long preamble.
We made the most of it. We attended the conference and met people from all over the world, as there were 45 countries represented at the Congress. We connected with the four other Canadian families there too. Our family basked in the welcoming presence of a space for people with Down syndrome. It was similar to the Oska Bright Film Festival experience, for the World Down Syndrome Congress was where everybody belonged. An ironic note: I have found that people who have spend their lives being left out in our exclusionary world sure know how to create a welcoming space for all.
Our time in the city of Brisbane was special too. Although the trip was mostly work and little play, I snuck out to the Gallery of Modern Art, Mike took me on a Ferris wheel ride (Aaron said NO WAY he wanted to go on it), we did a little road trip to the ocean for roadside fish and chips and capped off the trip with a half day at Australia Zoo before we had to catch our long flight back home.
I don’t like the way folks attend conferences, and then POOF, the experience flies out the window the moment one gets back home. This is why I like to share my take-aways. Here are mine from the World Down Syndrome Congress.
TOP LESSONS FROM THE WORLD DOWN SYNDROME CONGRESS
Take opportunity when it presents itself because that same opportunity will not come up again. Life is short. Go for it!
There is a desperate need for more learning opportunities for adults with intellectual disabilities like Aaron. People with Down syndrome are life-long learners, and in fact, Aaron attended Congress sessions for 6+ hours every single day. “I’m learning Mom,” he told me when I suggested he could take a break.
Development opportunities must be accessible. This Congress was for people who were local, had the funds, or who were lucky enough to find grant money or came from a country that has decent disability funding (Canada does not fall into that category). I’m hoping that our national Down Syndrome Society will consider bringing back their annual conference!
Personally, I learned the most at the sessions featuring the self-advocates. There was a whole day dedicated to Aaron and his peers (no parents allowed), which was fantastic. Self-advocates should be planning, leading and presenting at Down syndrome conferences. Period.
Canada is so far behind in their support of adults who have Down syndrome. Australia has a more robust funding system, support and opportunities for education for disabled people. At this point I put my head down on the table and weep. While I’m weeping, check out Bus Stop Films offerings to teach filmmaking to disabled folks. Please be in touch if you can help bring the Bus Stop concept to Canada.
There was a lot of interest in the film sessions at the Congress, including Emma, Aaron and Mike’s screening of Chicken and panel afterwards. It confirmed to me that the arts do inclusion well, as the industry in general is more welcoming to people with intellectual disabilities (than say, academia or sports). I was proud of my boys who rocked their session – Mike with his skilled moderating and Aaron with his ad-lib introduction of the film. And Emma….
What a gift it was to get to know Emma Pollard better during this trip. She was a superstar on the panel. Check out this comment from an audience member (Jen Crowther, the Chair of the Canadian Down Syndrome Society):
“(Emma) truly gave a masterclass on workplace accommodations – in this case, a film set. Loved it.”
I heart you Australia. This is my third time on your continent. All three times have been work-related. If I get a chance - and I hope I do - I’ll bring my family back for a pure holiday to enjoy your beauty and splendor.
Part 2 of Lessons from Down Under
Limestone Coast Local Health Network
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