‘merica has voted! But that’s not what I want to discuss today. I want to discuss an issue very close to my heart and one that is bound to outrage some, reinforce the biases of many and perhaps, to others, offer an insight into the debate on abortion.
I don’t usually discuss my family in public – other than trite attempts at humour at their expense – but there comes a time when personal experience and family life need to be placed on the record. My eldest son is 22 years old and has a rare genetic disorder known as Prader-Willi syndrome. He was six years old when we found out what it was he had and another couple of years before genetic testing confirmed the diagnosis.
He’s a really great bloke and we all love him. But to deny that his condition has not caused us and him and many around us great distress would be to deny the humanity of the situation. My son’s condition is not as debilitating as many others. He is not "profoundly disabled" and indeed, in many ways, lives a reasonably normal, if somewhat limited life. His diagnosis means that we were able to take steps to mitigate against some the more life-threatening consequences that Prader-Willi might otherwise have. Nonetheless, I can’t help asking "what if?"
My son lives a limited life. He has very little freedom to choose, what most of us take for granted, as many of the basic necessities of life. He is, if I read the signs correctly, desperately lonely, often afraid and spends most of his time trying to ‘survive’ in a confusing, scary and often very cruel world. When I think of the lifestyle he has to lead, the deprivations we must thrust on him if he is to survive, I cant but recall his plea to anyone who would hear just a few years ago. He told us "My life’s shit".
At that point a boundary was crossed. He opened up a frontier that was until that time confined to my darker moments and allowed me to question openly the right to bring into the world a person who will never be able to obtain the hopes, dreams and aspirations most parents hold for their children and indeed may well hold for themselves. I cannot speak for women, and its obvious why, so I cant say I understand what a woman goes through when she finds herself pregnant with a potential child she may not desire or hope for or whose life will be threatened by disease or disability. What I can speak of is what I have seen women go through when confronted with an unwanted pregnancy.
While some argue that the term "unwanted pregnancy" is a recent phenomenon, invented to justify abortions and propelled in popularity by the modern lifestyles of capitalist excess, selfishness and "sin", I believe that the term has only gained currency because it is emotive. The term brings together two opposing concepts. The first "unwanted" seems to indicated defective, unworthiness, less than all right, excess to demand and disposable. The second "pregnancy" indicates fertility, new life, maturity, the future, hope and desirability. When the two words are conflated into the term "unwanted pregnancy" they form a phrase that implies that the person who uses it is describing something akin to genocide.
At a time when medical science can save the life of a premmie – which in the case of my son was imperative – it is also able to provide low cost, safe (for the mother) and humane (if that is a term that can be applied) termination of the foetal life. Both are claimable on medicare and both processes are taught in the teaching hospitals. Both the life of the mother and the child are, in my eyes, equally valuable. However, I cant help but wonder what it must be like for a sixteen year old girl who has unprotected sex, is raped, taken advantage of or just doesn’t have the life skills to fully understand the ramifications of allowing the situation to occur, who finds herself pregnant and in a position in which she is forced to decide her life course in a moment.
Tony Abbott and the other paternalistic fascists who want to tell women and girls who find themselves in these situations that they should be denied the option of termination – not to mention those who find that their child, if carried to full term, would be born profoundly and permanently disabled – are only demonstrating a destructive, misogynistic ideology that has no reference to morality, justice or dignity to either the baby or the women involved.
It is with some shame that I often wonder what life would have been like if my son had been terminated. When this thought crosses my mind – and it does so less often nowadays – my instinctive response is shame and guilt. Guilt that I could be so selfish. Shame that I would even think this. Then I consider what he has and what he hasn’t. When I try and do that I find I can’t extricate my own desires for him and the desires he has for himself. On the same list I find that all the things I mourn for that he will never achieve are very similar to those things he knows he will be forever denied.
The only thing I can bring to the debate is that the decision to terminate must be one of the hardest and loneliest things a woman, whether alone or in a loving relationship, could make. I concur to some extent with those who argue, ‘but many do it because it will interfere with their lifestyle and they just don’t want to face their responsibilities’. The first half I have no argument with but when combined with the second half I struggle to comprehend it and am once more facing a conflation of competing concepts. Is it more responsible to bring into the world a child that will be ignored, have adverse decisions made for it by an unskilled or uncaring parent or to prevent that situation from arising? I can’t answer that with a simple "A" or "B" type answer.
The abortion "issue" as it is often described is one that has dwelt on my mind for 20 years. It is the most powerful "what if?" question I can think of. Yet I find myself looking at my son and asking "what if?" all the time. What if he had been the son I had hoped would be a great team player, scholar and friend? What if he had been able to attend university, do an apprenticeship or become an entrepreneur? What if he had decided to travel, to work for an aid organisation, to spend his time getting stoned, pissed and getting into fights? What it he hadn’t been born with Prader-Willi syndrome? What if abortion had been an option? What if we had taken the nurse’s advice and gone home and left him to die? No one can answer these questions and no one can know. Least of all my son and I. As I understand it, many women who have made the hardest choice of their lives ask themselves these same questions as often if not more than I do.
What would have this child been? Would they have been successful, bright and popular? Would they have loved me like I could have loved them? What these questions reveal is a depth of grief that only those who can ask the what if questions can know. It is deep, personal, dark and often debilitating. One may shed tears for shattered expectations when a young child or adult life is taken, but there can be found, in some small measure, the reassurance that the life that was taken did fulfil at least a small measure of the expectations placed on him or her. For those who face the permanent grief of the unanswerable "what ifs?" there can be no solace or raised expectation that will satisfy the emptiness one feels.
I am neither an advocate nor opponent of abortion. Nor am I a fence sitter. The issue is not something that should be decided by men in suits whose ideology blinds them to the complexities of real life. The question of whether to abort or not is something that is a deeply personal and personally emotional one for the women and their partners who must ultimately decide on having the procedure. What the men in suits can do is ensure that if the hardest choice of all is to be made, it be made in the knowledge that it will proceed safely, humanely and with compassion.
As to my son? He’s a great bloke with a smile as wide as the Nullarbor and a heart as big as the Great Australian Bight. He does OK I guess, in what he can. I’m glad abortion was not something we contemplated during his term. However, if you came to me and said "my unborn child has a disability that means they will be permanently disabled and unable to thrive." and then asked, "What should I do?" I would have to say, "I cant tell you what to do, but lets talk about it." All I ask is that we continue to talk but more importantly I hope that we listen even harder and with a desire to understand and journey with those who will forever ask "what if?"