Community looks different for everyone: How growing up with SMA shaped Sam and Jamieson
August 21st, 2026
By Jaxon Taylor
Growing up with spinal muscular atrophy (SMA) looks different for everyone. For Sam and Jamieson, both young adults living with SMA, one factor shaped their experience more than most: where they grew up.
“Growing up, I was the only person in a wheelchair. My childhood was very different to others that grew up in urban areas. It really does have an impact,” shared Jamieson.
Sam’s experience was not too different. Both grew up in regional NSW, Sam in Lismore and Jamieson in Dunedoo, where limited access to services such as public transport and accessible taxis made everyday participation harder and community more difficult to build.
Sam and Jamieson with fellow participants at the MDNSW Young Adults Retreat, March 2026.
Accessing community can be easy to take for granted. And for Sam, it was something he and his family had to actively work toward.
“It’s harder to do things that might be more fulfilling when there’s not much access to them,” Sam shared. “Everything that I’ve done in the community has been myself and my parents pioneering for me to get involved in it.”
In Dunedoo, Jamieson faced similar challenges, with limited accessibility making it difficult to take part in community life.
“Where I grew up, there were only like 10 shops in town, but I think only two of them I was even able to get into. Things weren’t necessarily accessible,” she shared.
And it wasn’t just public spaces that were challenging.
“Not all friends and family’s houses are accessible. My home was the only house that I could get into a lot of the time, so that did mean everyone came to me,” shared Jamieson.
Sam and Jamieson are now active members in their own communities, but as Sam mentioned, they’ve had to work extra hard for it.
For Jamieson, Boccia has opened the door to community and connection that reaches far beyond her own backyard. She’s been a part of the sport for eight years, competing in two Paralympic Games and winning silver in Paris. She was 16 when she first played in an international competition. One of the things that stuck with her most is how “accessibility and disability really is so different all over the world.”
Jamieson and ramp operator Jasmine Haydon of Team Australia after winning silver in the Women’s Individual BC3 event at the Paris 2024 Paralympic Games. (Photo: Michael Reaves/Getty Images)
Jamieson continues to represent her country in Boccia, with her eyes set on the 2028 Paralympics in Los Angeles.
For Sam, community has come through his local Scout group, where he’s been involved since he was 11. This community, he says, has embraced both him and his disability, “It’s a place full of diverse people. It isn’t focused on any one person, religion, ethnicity or anything like that. If you want to participate, you can participate.”
Sam enjoying a visit from Paws Pet Therapy at an MDNSW Overnight Program.
Alongside finding community independently, there’s one community that both Sam and Jamieson are brought together by, despite growing up over 600km away from each other.
That community is Muscular Dystrophy NSW. Since 1957, MDNSW has brought together people across NSW with shared experiences of neuromuscular conditions. For Sam and Jamieson, MDNSW has expanded what community can look like by creating opportunities to connect with others who understand disability and lived experience.
Sam and Jamieson have been attending MDNSW’s Overnight Programs since they were young children. And according to Sam, these programs have helped him find community and expand his independence.
“There were things that I didn’t think I’d be able to do… playing wheelchair sports…”, Sam said of the programs. He added, “Talking to someone who doesn’t have a disability, you have to explain the whole thing. Talking to someone with a disability, they get 80% of it. The extra 20% is just the story you’re telling.”
As Jamieson said:
“I think it’s so important to find your community… it can be scary at times, especially if you’re young, but I think it’s so important for people with disabilities to reach out to get that exposure with people with similar experiences and similar abilities to develop those friendships.”
Because sometimes, after everything it can take to be part of a community, the most powerful part is finally being understood. Finding people who understand and discovering that independence, connection and friendship can follow.
Postal Address: PO Box 3071, North Strathfield NSW 2137
Muscular Dystrophy NSW would like to acknowledge the Traditional Custodians of the land on which we live and work, and we pay our respects to their Elders past and present. We extend that respect to all Aboriginal and Torres Strait Islander peoples.
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