Aaron has hopes and dreams. He dreams of being a dancer. He hopes to save enough money to go to Africa and to get his bathroom renovated.
To him, independence means “looking after my cat, eating well, sleeping well, paying bills on time, making a network of friends”.
He acknowledges that sometimes he has made good choices, sometimes bad choices.
Aaron has more freedom of choice than many of Australia’s four million people living with a disability.
His parents bought him an apartment 10 years ago and he is able to live alone, look after himself, maintain a part-time job and have healthy, fulfilling relationships.
Choice for people with disabilities is at the centre of a project developed by a joint team from RMIT and Inclusion Melbourne, a day service that supports people with intellectual disability.
The team set out to examine how much choice people with disabilities have, and look at ways to educate them and their carers about the need for choices in their lives.
The result is a toolkit called It‘s My Choice – a DVD, discussion guide and series of booklets.
The DVD provides a snapshot of the daily lives of three people with disabilities, including Aaron, each in very different circumstances.
Associate Professor Paul Ramcharan, from RMIT’s Centre for Applied Social Research, says the team was engaged by the Department of Families, Community Services and Indigenous Affairs.
The federal project supports the implementation of the National Disability Insurance Scheme, which has pilots operating in several regions around Australia.
The research splits the concept of choice into three groups related to people’s lives – mundane choices such as what to wear and what to eat; lifestyle choices such as rituals, routines, culture and activities; and pervasive choices that cover areas such as health, education, work, family and intimacy.
“If you look at the national statistics for pervasive life choices for people with a disability, they haven’t changed much over past 30 years,” Ramcharan says.
“People with disabilities often have more choice about what to eat or what time to go to bed (than they did in the past).
“That is important but not at the level of those pervasive choices, which really ask: ‘What are a person’s hopes, dreams and aspirations?’
“If they don’t have access to those pervasive choices they can get stuck in the same cycle between the ages of 19 and 55.
“And their movement through their life cycle doesn’t mirror the chronology of development that occurs for the rest of the population.
“What you end up with, in that case, is someone saying: ‘Oh, Johnny’s been down the local leisure centre this week and he goes every week so that’s alright then, that’s social inclusion’.”
Ramcharan and his team argue that no one has complete freedom of choice. But the aim for people with disabilities is that the limitations they face are no different to those of everyone else.
One of the booklets, A Guide for People with a Disability, their Family Carers, Friends and Advocates, includes exercises and discussion points for the disabled person and their carer to work through together in order to identify what the person wants and values from life.
Story: Rachel Kleinman
Photo: Carla Gottgens
This story was first published in RMIT’s Making Connections magazine.