Greg's Journey to a Better Life. A Bespoke User Perspective
This article was written by Frances McKennariey and appears in Interaction, Vol 26 #2&3, pp 42-43: Republished with the permission of National Council on Intellectual Disability www.ncid.org.au
Several years ago, I took on the responsibility for my older brother Greg. Greg has Acquired Brain Injury from some decades ago and since then has had a 'default' life - the life you have when you're not having a life. In recent years, he has been perceived as a drain on resources and the family member who should really be in 'special care'.
Many years ago, my parents had tried to lay the foundations for a better life for him but somewhere between restrictions of Service Providers and the daily struggle to remain committed to his care, there was a change in Greg. His health deteriorated through inactivity and he was suffering from chronic headaches, memory loss and falls. Greg had no social contacts outside carers and family and his only dedicated friend and carer through the last ten years passed away which as a very sad loss for him. This all added to his dependence and development of 'high care' needs. Anyone involved with was fighting against a tidal wave of despair.
Then eighteen months ago, we joined Bespoke Lifestyles. Bespoke changed my understanding of what could be done to enrich Greg's life and has given new energy and vision for anyone who works with him. By remembering what he had once loved and also testing new possibilities, his life i now changing from one of survival mode to one of vision and hope.
Greg now goes to the gym three times a week which he loves. His general well-being and posture have improved and he is soon going to test the social club of Sporting Wheelies. He does volunteer work at a local nursery and has a good social interaction with the regulars there.
My first Bespoke Lifestyles' workshop taught me the importance of choice and personal expression. The new system of choices has allowed creative input from support workers. Greg loves to choose his own clothes each day and when shopping. His personal style and choice of clothing has changed his image from non-descript generic to a mature man who dresses with style - Rolling Stone t-shirts and cool black jeans, sometimes a Leonard Cohen style hat or maybe the black French beret. He now polishes his own boots every week and generally is developing an awareness of 'self' which had diminished under the administration of the well-intentioned 'care' of the past.
Greg is now learning to use an iPad for communication and personal resources which he loves. He has had a weekend staying at Mt. Tambourine to celebrate a birthday followed by a beach holiday with support workers - his first independent holiday in twenty years. It included beach walks, barbeque and mini golf. Needless to stay he was very happy.
Now I'm enjoying the challenge of developing a good life for Greg and thinking about what comes next. It takes time and energy and the assistance of others, including Greg's support workers who shine with enthusiasm and good will. Once I felt guilty and powerlessness when I looked at Greg. Now there is joy!