Scott, 24 years old, was born with Duchenne muscular dystrophy (DMD) and is challenging people to recognise his capability and not his disability.
Duchenne (doo-shen) muscular dystrophy is the most common type of muscular dystrophy, which affects about one in 3,500 boys throughout the world. Girls do not usually develop DMD. It is a genetic neuromuscular (nerve and muscle) disorder characterised by progressive muscle degeneration and weakness.
Approximately 1 in 6 (18%) or about 4.4 million Australians have a disability.
The International Day of People with Disability is a United Nations Day observed internationally on 3 December to promote community awareness, understanding and acceptance of people with disability.
Scott believes that every day, we should celebrate and value the diversity of our global community regardless of our abilities and create a world where a person is not characterised by their disability, but by their ability.
Scott, who lives independently with support, is frustrated that many people see his physical disability but also think he has a mental disability. His greatest wish is to be included like everyone else and have equal human rights.
“People don’t always understand we are as capable as someone without a disability,” said Scott. “So you’re often treated with disrespect and not treated as an adult.”
After finishing his HSC, Scott completed a Diploma of Travel and Tourism Management at TAFE and hopes to have a job in a travel agency specialising in disability travel. He’s travelled interstate and overseas producing VLOGs (video blogs) based on accessibility in various destinations and hotels and likes to research and give advice on accommodation and activities to help people with disability organise their holidays.
Scott with friend at Manly AYAH
Scott enjoys being out and about in his community, raising awareness for people living with neuromuscular conditions and to help people with all disabilities be included as much as possible.
In addition to volunteering with Muscular Dystrophy NSW (MDNSW) as a mentor and running activities during their summer camp, Scott uses his lived experience by providing advice as a member of the Access Advisory Committee on Parramatta Council and the MDNSW Peer Advisory Committee.
While the Disability Discrimination Act (DDA) makes it against the law for public places to be inaccessible to people with a disability, Scott is often confronted by barriers which prohibits access even to major retailers.
If the lift is out at the local shopping centre, and there is no alternative access provided, Scott can’t buy groceries. Or if tradesmen park their utility trucks over the accessible entrance at his favourite hardware store, the only access for Scott is via the driveway, which is dangerous.
Scott says simple procedures could be put in place to address these issues, but he would really like people to understand the experiences of those who are living with a disability and for more consultation with people with disability to ensure accessibility is met.
In addition to travelling, his interests are cooking, growing vegetables on his sunny balcony and anything to do with tea drinking. He also loves card and candle making, music and breeding colourful Gouldian finches.
Scott at Manly AYAH with registered nurse Jane
Scott appreciates a break from his normal routine and some respite time at the Adolescent and Young Adult Hospice (AYAH) located in Manly. He says they have everything he needs from a hoist for showering to a soft pressure air mattress, but more importantly he can also access the services he requires to manage his condition such as physiotherapy.
AYAH is a free service available for 16 to 30-year-old patients with life-limiting illness and offers respite care, symptom management, end-of-life care, and care coordination support in the transition from children to adult services.
“AYAH has a holistic approach and being there makes me feel good,” said Scott. “The staff are amazing and treat you with respect by asking what you need and help you how you want to be helped.”
Scott’s parents often drive him to AYAH and stay for dinner. The chef, Scott says, is fantastic and will even make special meals on request.
Prior to the facility opening to patients in February 2023, Scott participated in the recruitment process, interviewing potential staff on working with people with physical disabilities and he was also selected to trial the services during an overnight stay.
Nigella Lawson with the cupcake painting by Scott and Patrick
On a recent visit to AYAH, Scott and a friend were fortunate enough to be invited to hear famous food writer Nigella Lawson talk. They were so excited to receive signed cookbooks from Nigella that they painted a cupcake for her to say thank you. You could imagine their surprise when they received a response from Nigella with a photo of her holding their painting!
Scott has planned a week’s respite at AYAH later this year and is looking forward to meeting up with some friends while he’s there. Inspired by the musicians who perform at sunset on the balcony at AYAH, he’s writing a song about his time at the facility.
Also on the agenda are a few karaoke sessions and strolls along the beach promenade at Manly, but one thing is guaranteed, and that Scott and his friends will create lots of great memories at AYAH.
If you would like to support Manly AYAH and help make a difference to the lives of young adults with life-limiting conditions, please make a tax-deductible donation here. For sponsorship opportunities, please contact the NORTH Foundation office.
