This brilliant mind 'not worth resuscitating'?

PHILLIP Garvey always knew something was missing in his life.

But it took two major events virtually colliding in his mid-50s to steer him down the disability advocacy path.

Born with cerebral palsy in Ballarat in 1957, Mr Garvey spent most of his childhood in supported accommodation in Melbourne, attending a former Spastic Society school and returning to his family over school holidays. In 1994, he moved back to his home town permanently and settled into a unit.

‘‘During this time I started to explore how I could become more involved in my local community,’’ Mr Garvey said. ‘‘I had always been involved in day centre activities and other social occasions involving friends and family, but I felt like I wanted something more.’’

In 2012, Mr Garvey – who uses a wheelchair and has a text to voice device – had a PEG tube inserted to help his eating and breathing.

But because he couldn’t talk, Mr Garvey found himself with no say over his own health-care decisions. His medical team even assumed he needed a guardian’s authorisation for health interventions, including resuscitation.

One doctor commented to Mr Garvey’s carer – not Mr Garvey himself – that ‘‘we don’t see the point in resuscitating people like Phillip because they don’t have the same quality of life’’.

‘‘I felt very hurt, and as though I was treated like a second-class citizen. It took several heated discussions before they took me seriously. I still have the intellect, although I have difficulty with communication and movement.’’

A year earlier, Mr Garvey had moved into McCallum Disability Service’s My Future My Choice housing.

These houses were built to prevent young people from living in nursing homes.

With a high staff-to-resident ratio and its own bus, Mr Garvey found a suddenly bright new future, with support and transport available to attend disability rights forums and conferences.

‘‘I am always heard and have a voice at home in all life areas.’’

His new living arrangements, plus his negative hospital experience, combined to give Mr Garvey his career path.

‘‘I would like to communicate and assist people to have a say in choices involving their everyday needs. I want to promote and convey to people with a disability that there is help available with linking them into services.

‘‘I’ve always had an interest in advocating for people with a disability. I’ve been more interested in becoming more involved with this since moving to my new home.

‘‘I have a passion and a willingness to learn as much as I can to help others.’’

He now also has a keen interest in the National Disability Insurance Scheme.

‘‘It makes me feel proud and hold my head high as I am doing my best to make positive changes in people’s lives.’’

Mr Garvey said he had achieved a lot of goals but still had more to come, including liaising with local councils over disability issues.

‘‘I would like to establish networks with disability services, including the Department of Human Services, Scope, McCallum Disability Services, Pinarc and the Summer Foundation,’’ he said.

He also wants to meet regularly with health professionals to discuss disability issues.

‘‘My advocacy work will be to assist people with a disability who find themselves in situations like mine find their own voice when dealing with the health and hospital system. I do not want to see people with disabilities be overlooked in the health decisions that affect them.

‘‘I know that it is an old ignorance that has kept people with disabilities treated this way but I look forward to the day when it ceases.

‘‘I am glad that society is slowly catching on to the belief that all people deserve the same healthcare, respect, opportunities and quality of life regardless of their gender, race, religion, sexuality and range of physical ability.’’

Outside of his disability advocacy role, Mr Garvey has several other passions.

He loves his coffee, the Geelong Football Club (his pet bird is named Jimmy, as in Bartel), swimming, attending seminars, ABC talkback radio and his computer. But he said his true passion was his new career path.

‘‘I have always felt that I have so much to give back to the world and have, at times, been frustrated in not knowing how to break into these types of professional fields that interest me.

‘‘I know that being able to contribute in a meaningful way is one of the big things that helps me to emotionally keep well and live well.

‘‘Look out for me in the future. I will be the health advocate making a lot of noise and who will not stop until people with disabilities, health and care rights are upheld and acknowledged.’’