Anne Urquhart (Tasmania, Australian Labor Party) Share this | Link to this | Hansard source

I rise today to share the incredible story of Greg Ryan and I'd like to acknowledge Greg's presence in the gallery today. Greg's is a story of determination, struggle and ultimately acceptance and international advocacy. Immediately after birth, some 54 years ago, Greg was unusually short of breath. His doctors conducted a more thorough examination and discovered that he did not have an anal opening due to the congenital condition imperforated anus, or IA for short. His parents were advised that they should arrange for a baptism as soon as possible and there was no certainty he would survive the day. Greg was baptised an hour after birth, placed in a humidicrib and rushed in the back of his father's Volkswagen across town to the Royal Children's Hospital, where Greg was quickly admitted. After life-saving surgery was performed within 24 hours, for the next 50 years, Greg told no-one of his IA except for his parents and medical professionals—not his wife, not his brother and not his friends or colleagues.

Then, four years ago, Greg returned from a short holiday. He only lasted three days on that holiday before suffering a serious mental breakdown. In his words, he returned in disarray both physically and mentally and, for the next few months, lived in torpor, despair and isolation, regularly mutilating himself and searching for a pathway out. Somewhere in the haze, he recalls searching 'imperforate anus' on Facebook, hoping for a support group for people with the condition. Greg found three groups and, soon after introducing himself, was contacted by a young woman who also lives in Melbourne, who is the mother of a young man with IA. Greg was invited to meet up at the Melbourne zoo with four mothers and their children, some with IA. Greg was apprehensive but also excited on arrival. He had never met anyone else with IA. For the first hour, they strolled through the zoo and chatted casually but awkwardly.

Over lunch, the inevitable conversation began. Greg recalls that one of the mums described the history of her then seven-year-old son and how he required daily enemas. Greg writes that he was overcome with emotion. As he watched this wonderful child enjoy the company of his peers, he saw himself. He says he had to do everything in his power not to burst into tears. Soon after, he began talking to one of the other mothers, Christi. Greg asked Christi how her daughter was, enquiring if she had to endure the daily, debilitating treatment Greg so remembered from his childhood. Christi responded: 'It's not my daughter, Greg; I am the one who has IA.' Greg was speechless. He said tears ran down his face. It was the first time either Greg or Christi had met another adult with IA. They had both lived a lifetime believing they were the only person in the world with this condition.

From that chance inquiry on Facebook, Greg then met people from around the world. He had a support network. He became a key in the worldwide IA support network. He became the voice of thousands of children around the world, to assist their parents, their carers and doctors understand the whole experience of a child with IA. Over time, Greg saw the need to take further control of his life. He created a Facebook group for adults living with imperforate anus. This secret group allowed adults a private space to discuss issues in an open and supportive environment. The Facebook network led Greg to the Pull-Thru Network in America and to Orlando, Florida, where he attended a conference which changed his life—not medically, but mentally. It created a sense of determination to let people know about IA and to share the patient experience with doctors and surgeons who saw the physical conditions as medical problems to solve but hadn't adequately considered the whole person—the mental trauma of daily life with IA, the enemas, the leakage, the hundreds of days in hospital, the fear of breakdowns and the complete lack of support from teenage years to adulthood.

I met Greg just weeks ago, after I was invited to join the advisory committee of his new charity, the ONE in 5000 Foundation. ONE in 5000 was formally established late last year to advocate for Australians with anorectal malformation, which is the other name for IA. The foundation's name is derived from the fact that one in 5,000 people are born with some form of IA. Greg has written a book, A Secret Life: Surviving A Rare Congenital Condition. It's a fabulous read. The book is the first of its kind on the patient's experience of IA. Greg gave me a copy of the book and I simply couldn't put it down. I'm not a big reader, but I read it within about a day and a half, in between flights and the whole range of things. It's probably one of the most frank, honest and enlightened stories of someone's life that I have ever read. Greg honestly shows the courage he has as a human being, sharing the most personal aspects of his life.

Greg has tried to lead and has succeeded in leading a reasonably normal life, including things like playing sport, holding down jobs and getting married, but he has encountered many barriers while living everyday life. He brutally outlines how, while he could often deal with the challenges, on a small number of occasions things simply just got too much. In the book and over dinner, Greg honestly shared the struggles he has had with depression and that, on at least four occasions, he has suffered serious mental breakdowns. Sitting at the table in an Italian restaurant in Fitzroy eating dinner with Greg and my good friend Les Cameron was as normal as anyone could imagine. The other diners would not have been aware of the story that I was hearing; neither would they have been aware of the traumas that Greg had experienced during his life. We looked like any other three people out having dinner, talking, laughing and enjoying themselves.

I must congratulate Les for his advocacy of and support for Greg. Eight years ago, after a serious mental breakdown, Greg could work no more. His psychiatrist and GP recommended that he apply for the disability support pension. Remarkably, Greg's first application was knocked back, despite strong evidence from his medical professionals that he was not able to work. Greg decided to appeal, and Les accompanied him to the appeal meetings and acted as his advocate through the process. The decision was not the fault of Centrelink; it was due to the culture and framework of a broken institution, an institution that must be reformed to be a vital support service for our most vulnerable people. Greg finally secured access to the DSP, after strong advocacy from himself, Les and his psychiatrist, an effort which placed an unnecessary and cruel burden on Greg. Les also supported Greg in writing the book and establishing the ONE in 5000 Foundation.

The ONE in 5000 Foundation has a clear vision that within five years we will ensure that every child born with IA or ARM in Australia, and possibly across the world, is guaranteed to be born into a community that is aware of IA and the need for human support for each child; that has parental access to comprehensive online information, linked to age and nature of the condition; and that has first-rate surgical and clinical care from a well-coordinated set of medical practitioners, from GPs through to highly trained colorectal specialists, from paediatric to adult care. This vision includes the need for a world-class centre for paediatric colorectal and pelvic conditions at the Royal Children's Hospital in Melbourne, led by Associate Professor Sebastian King. I know that Greg has an ongoing caring relationship with Professor King. He spoke very fondly of him during the dinner that we had in Fitzroy that night. Such a centre should include, on staff, a specialist colorectal nurse coordinator, a stomal therapist and a continence nurse, as well as a part-time social worker and a psychologist.

The final aim of ONE in 5000 is comprehensive support for children, parents and family that is the equivalent of that for any other congenital condition. This support would include a world's best-practice peer group support program, with training for IA and ARM community members.

I want to thank Greg for his advocacy, and I want to thank him sincerely for travelling up here today. It's a massive thing to come to Canberra to listen to someone deliver a 10-minute speech. Thank you, Greg. Thank you for your advocacy and for your passion. I urge everyone to read A Secret Life. I know we're not allowed to have props, but I have the book here; it is the most fantastic read. Learn more about IA, ARM and the ONE in 5000 Foundation.