Career carer

Dr Jane Tracy is a qualified GP and experienced medical academic. She is also one of the nation's best teachers, recognised with a national award for teaching excellence last year

But working as one of the world's leading experts in teaching health professionals how to deal with people with a disability is just what she does in her spare time.

Her passion, her vocation and her internationally-recognised expertise in medical teaching is driven by her full-time career.

For more than two decades, Dr Tracy's primary role has been as mother of two; to Nick, 23, who has complex multiple disabilities and Emma, 19, who does not. Not a career in the traditional construct of money, role and status, but certainly in the sense of time and emotion invested, and in defining her contribution to the world.

After graduating from Monash University with a medical degree in 1981 Dr Tracy worked as an intern and resident, then four years later she had Nick. He was born without any obvious signs of disability and Dr Tracy expected she would return to part-time work within about six months.

"He was fine at birth, but at three months he had seizures," she recalls. "His development slowed down after that. Often kids with disabilities don't sleep well - and Nick was certainly a good example! In fact he didn't sleep through the night until he was seven years old. That was tough - everything is harder to deal with when you're very tired."

Nick's disabilities were diagnosed in his first couple of years. First with epilepsy, then cerebral palsy and later as an intellectual disability. The six months off "work" turned into five years as she learned about Nick's abilities and needs and to navigate the service system to achieve the best possible outcomes for him.

"Coming from a medical background, other doctors often assumed I knew more than I did. It's very different when it happens to you," Dr Tracy said. "Health professionals can forget that it is the very first time that a parent has had a child with a disability."

Jane worked for some time with advocacy groups for people with disabilities and their carers, then, in 1992, after giving a lecture on disabilities, was invited by Dr Philip Graves, to work at Monash Medical Centre with families who had children with disabilities.

In 1998, following the formation of the Centre for Developmental Disability Health Victoria at Monash, Dr Tracy worked with her colleagues to develop and implement curriculum training for undergraduate doctors in how to deal with a patient with disabilities.

Every fourth-year medical student at Monash now receives training in understanding the health and health-care needs of people with disabilities, and strategies to overcome some of the barriers to good health care.

"For many students it's the first time they have met a person with a disability and the opportunity to do so helps students get over their discomfort and to realise that people have the same bodies and illnesses," Dr Tracy said.

This year, in partnership with staff from a range of health disciplines from the Peninsula campus, and six people with disabilities and their families and carers, Dr Tracy has released a new suite of materials in an e-Learning DVD Health and Disability: Partnerships in Action to extend training in disability health across the health professions.

"It's a unique way I can contribute. Other parents choose to separate their work from their home lives - which is understandable, because it is very demanding being a carer but for me, I have found it tremendously valuable that my parenting informs my work and my work informs my parenting," Dr Tracy said.

"My personal experience gives me a lot of credibility with the students."

When asked how much the birth of Nick has changed the course of her life, she immediately responds "immensely" - but not for the reasons anticipated.

"It has changed me in terms of appreciating what is valuable in human beings and in life, and in focusing on the positives and the abilities in everybody.

"It has also given me an appreciation of the richness that difference brings to a community."

The list of what Nick can't do as an adult is long (he can't speak, he uses a wheelchair to get around, he can't count beyond three) and needs to be listed each time Jane applies for services on his behalf or for her family.

However, ability is a far more practical concept for Dr Tracy. "I wish the world could see the love he gives and receives from others, and his wonderful inspiring ability to enjoy every moment of his life," she said.

"He is in love with a woman who also attends his day program, they are and feel so special to each other. He also has a dog called Millie and a great sense of humour. The more times he sees or hears a joke the funnier it is, so the rewind button gets a lot of use for our video and the laugh gets louder the more a joke is repeated."

Ever consumed by her passion, her primary motivation is not to find money for herself or to escape her responsibilities, but rather to seek funding to keep expanding resources for health professionals. To keep chipping away at educating health professionals so that people with disabilities get better health care.

"I'm not aware of any similar program that has been done before, one focusing on educating a broad range of health professionals in providing best practice care to people with a disability. I hope the teaching we do, and the resources we produce demonstrate how important, interesting and rewarding it is to work in this area," Dr Tracy said.

"Monash has the most advanced curriculum in educating health professionals about developmental disability in the world as far as we know. But we want more universities to use it, to keep improving life for people with a disability."