Last Friday in The Age Newspaper there was a candid interview with the president of the Australian Human Rights Commission, Gillian Triggs. In the interview Ms Triggs commented on many important human rights issues ranging from racism to asylum seekers. She pulled no punches. She also revealed that she gave birth to a profoundly disabled daughter, Victoria. Her daughter was born with Edwards Syndrome, which is a very rare chromosomal disorder. In Triggs words Victoria had been born, “as severely retarded as anyone who is still alive can be.”
Shockingly when Victoria was born doctors advised Triggs that she should, “Leave her in the corner and she’ll die.” If this is not shocking enough Triggs admits that when she looked at her daughter she thought to herself, “Well, you’re going to die, so I’m not going to invest too much in you.”
But Victoria did not die. Said Triggs of Victoria, “She had this inner rod of determination and simply refused to die.” After six months Triggs took Victoria home. The Uniting Church assisted her to find a family to care for Victoria. Putting Victoria into the care of another family caused conflicting emotions in Triggs. Triggs explains it in this way, “ …because you have a child and you expect to look after her. But in the end I simply made the judgment that I would rather put my time into my other children and family, because I never believed she would live to that age.” Triggs daughter died at the age of 21 and she is very grateful to the family that cared for her.
Triggs candidness has shocked many in the disability sector. I am a pro-life person; I believe every person with a disability deserves to live. I believe it is no ones business to play judge and jury about the quality of someones life. Even so I can only imagine the horror that Trggs must have experienced when the doctors advised her to leave Victoria to die.
At the time one can imagine that this was Triggs first REAL experience of disability. She may have seen people with a disability on the street and she may have even known people with a disability but most likely Victoria was the first time that she had ever had to confront disability personally. But it was not just disability that she would have had to confront. She would have had to confront some of the severe abnormalities that Edwards Syndrome causes and some of these can only be described as horrific. In such circumstances all she could have done is to rely on the advice of experts, in this case the doctors. The advice they were giving her was to let Victoria die. It must have been traumatic to the extreme.
Victoria did not die. She lived against all odds for a further 21 years. In the time before Triggs took Victoria home from hospital it is quite obvious that she was preparing for her to die. People cope with these situations as best they can. Triggs seems to have tried to be detached and wanting to bond with her daughter as little as possible. It might sound inhumane but given the circumstances and the advice from doctors it is entirely understandable.
One can only guess the emotions that Triggs must have felt when she finally took Victoria home. Having tried to prepare herself for the death of her daughter, and having been advised that this was inevitable, she now found herself confronted with a lifetime of providing care to her profoundly disabled daughter. Not only was Victoria profoundly disabled she would have also had a myriad of other severe health problems.
It would naturally be daunting. She was clearly conflicted. She would have been thinking about her established legal career, would she have to give it up? She would have been thinking about her other children. What attention could she have given them if she was caring for Victoria around the clock? What of her husband and her relationship with him? Would it survive?
It is easy to get on ones high horse decry that Victoria is a living human being who should be treated with dignity. In any case I believe that she was. Sometimes we forget that the parents are living human beings too. Dealing with a situation where you are confronted with a lifetime of care for a child with a disability is daunting and traumatic. Each individual will respond differently. Some will throw themselves head first into the care of their child with a disability. Others, like Triggs, will make decisions based one all factors in their life, particularly the other family members who will be impacted.
Triggs chose to give up her child to the care of another family. She has also told her story in what some may describe as a politically incorrect way. She should not be judged for that. The decision would not have been easy. It’s so easy for us to be shocked by the detached and seemingly emotionless way Triggs tells the story. It’s so easy for us to be shocked by her use of words such as retarded. But all of this happened a long time ago. Perhaps this business like and detached way that she tells the story is just her way of dealing with what would have been a very difficult time in her life.
Triggs is not alone in her experience. There are many, many other parents who have experienced what she has. There are many who will have made similar decisions to give up their child to the care of others. They do so with the best of intentions for the child and everyone in their lives. Triggs was perhaps a victim of the times and circumstances. Who knows if she would have been advised or reacted differently in todays enlightened age.
As shocking as her story and her method of telling it is, she deserves our empathy, not our judgment.