People with lived experience and professional expertise come together to discuss health and wellbeing rights for people with disability.
“You matter, and your rights matter.”
This was one of the opening lines from MC, Wayne Herbert, at Aruma’s 2023 Human Rights Conference and set the tone for an honest, informative, and eye-opening day.
Each year, the conference brings together people with lived experience and professional expertise for real and raw conversations about human rights for people with a disability.
The theme for this year was “Because I Matter: Health and Wellbeing rights for all.”
Throughout the day, conversations were sparked, and questions were asked. All agreed that there is an overwhelming need for changes to the health, law, and education systems to help people with disability live the life they want and deserve.
If you missed the live stream or want to revisit the day, view the recording below:
Starting off the day with sequins as a self-described “feast for the eyes,” MC Wayne Herbert, shared his story of the trials and successes he has experienced as a proud member of the LGBTQIA+ community and a man with cerebral palsy.
“My disability and my sexual identity are the least interesting things about me but there are things about us [people with disability] that others don’t know, because they don’t ask,” said Wayne.
He continued, “I have lived my whole life under the weight of low expectations but why do we expect people with disability to accept less?”
Our guest speakers, Aruma residents, Cody Barrett and Tracey Hewat, also questioned the stereotypes others place upon them.
“I don’t like using the word disability. It’s far more important to look at your abilities,” said 22-year-old Cody.
Cody lives in an Aruma home in Burleigh Waters, Queensland and is a confident advocate both on and off the footy field. Cody won the 2022 Gold Coast Titans Male Leaguability Player of the Year and has travelled the world for football.
While Tracey would prefer to host a party rather than play footy, she shared how the simple things in life make the grass greener in her own home.
“I make my own choices. Choosing when I go to bed, what I eat, and having my privacy and dignity respected is what human rights means to me. I believe good health and wellbeing starts with a safe space to call home.”
Dr Dinesh Palipana also discussed the importance of safe spaces when he shared his journey. He went from medical student to patient at 25 years old when he was involved in a motor vehicle accident that caused a cervical spinal cord injury.
“Before my accident, I had no idea what life was like for a person with a disability. Think about that: I was studying to be a doctor and had no idea what 1 in 6 Australians experience,” said Dr Pailipana.
Despite the resistance he experienced from universities, hospitals, and society in general, Dr Pailipana went on to become the first quadriplegic medical intern in Queensland and is the first person with a spinal cord injury to graduate as a doctor in Australia.
Professor Julian Trollor, Chair of Intellectual Disability Mental Health at the University of New South Wales, head of the Department of Developmental Disability Neuropsychiatry within the School of Psychiatry at UNSW, and an NHMRC Leadership Fellow, brought awareness of health issues faced by people with Intellectual Disability.
Professor Trollor shared some startling statistics. 30% of deaths in people with Intellectual disability are preventable with regular health care treatment like vaccinations, and there is a 27-year difference in the life expectancy of the general population compared to a person with Intellectual Disability.
He concluded by posing an important question to the audience, “In Australia we have lots of sophisticated strategies in place, but what are the meaningful implications we can see?”
Professor Trollor also joined a Q&A panel with Aruma’s Human Rights Advisory Committee Co-Chair, Elyce Shearer and Aruma residents Thomas Sargeant and Kate Towers to keep the conversation around mental health going.
“Good health means having good influence around me, having people check in on me and keeping active with friends,” said Thomas.
Kate agreed, “Having people, friends, and community is so important.”
Elyce also discussed the important topic of learning from people with lived experience.
“Hire more people with a disability to get their voices heard. Give us the opportunity to speak and be heard,” she said.
We ended the day by welcoming Kate back to the stage to share her reality of living with Prader-Willi syndrome. This year marks 11 years with Aruma, and Kate thanked her family, Aruma staff, therapists, doctors, and many others who have helped her get to where she is today.
We’d like to thank this year’s sponsors, Bartier Perry Lawyers, EML, Mercer Marsh Benefits, KPMG, and acknowledge that this conference received grant funding from the Australian Government.
We hope all attendees enjoyed the event and look forward to seeing you again next year.
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