It has been months since my last post, and while Max’s story has continued to unfold, my attention has been taken up with grappling with the daily minutiae of French administration. These challenges have managed to completely paralyse my creativity, so this blog has been very neglected. But the events unfolding in both the Australian and UK media over the past few days around Down syndrome have prompted me to revisit it, and hopefully to initiate some discussion among us to try and make sense of what we are dealing with.
So, just so we are all on the same page, here are the two issues under discussion: In Australia, a young couple with Down syndrome has recently been the subject of Australian Story, an excellent television program that broadcasts documentaries of ‘ordinary’ Australians living ‘extraordinary’ lives. This couple is in love, wants to marry and have children; their parents are very anxious about whether or not this is achievable without large amounts of support from them. I haven’t seen the program as I can’t access it from here, but I did see a snapshot of it in an interview on The Project, a current affairs program, that had been posted online.
In the UK, a medical breakthrough in pre-natal testing has stimulated debate on the subject of termination of foetuses with Down syndrome (DS). At the moment, the general, non-invasive screening for DS has about 85% to 90% accuracy while definitive tests are invasive and carry a risk of miscarriage. The new test is non-invasive and has 99% accuracy, so it seems likely that many more prospective parents will choose to have it. Could this lead to higher termination rates where the foetus is found to have DS?
Both of these subjects are controversial, complex and very close to my heart. Max is in a long term relationship (more than three years) with his delightful girlfriend – who also has DS – and they, too, want to get married. Max adores children, and has said he would love to have babies of his own. This raises a huge moral dilemma for me. I would love nothing more than for Max to be happily married and a father, and I do believe that it should be his right to choose to have a child. But – and it is a big but – I honestly can’t see how he and his girlfriend could manage the overwhelming task of raising a child. They have a wonderful relationship, but my observation is that it is a naive relationship that lacks an understanding of the difficulties all long term relationships face, especially when it comes to raising children.
My concerns are not limited to the daily routines of feeding, changing and bathing a newborn: these challenges in themselves would be huge, but could possibly be overcome with support. But what if the baby is unsettled and cries all the time? How would they deal with the sleep deprivation? What about a toddler who challenges their authority, who has tantrums and runs away from them when out shopping? What about the eight year old boy, for example, who wants his dad to coach his soccer team? And the 10 year old girl who wants her mum to coach her netball team? And who, for that matter, will drive them to soccer/netball/sleepovers? Who will help them with their homework? And what if, and for me this is the biggest worry of all, what if they have a baby with Down syndrome? I know from first hand experience that a child with DS needs a lot more attention than a ‘normal’ child. How would they manage?
Max with his 1st cousin once removed (I think!). Anyway, changing his first nappy. He adores her!!
Of course these issues are only arising as a result of progress. We are now seeing a generation of young adults with DS who have grown up as part of their family; who have been educated; who engage with their community and who lead interesting, meaningful and reasonably long lives. These are all wonderful things and an indication of how society is changing. But as a result, new challenges are being thrown up. At the moment there are no reliable data around the likelihood of two people with DS having a baby with DS, as such cases have rarely been documented. Evidently infertility is more common among people with DS, but again, data are not reliable as most people with DS haven’t had fertility tests. But all this aside, my dilemma remains: should Max be allowed to exercise his human right to father a child with a woman he loves? Or should I, as his guardian, carer and biggest fan try to help him change his mind because I think that in all likelihood (not through lack of love, goodwill or effort), he will not be able to care for his child adequately? I honestly don’t know the answer. And then there is the question lurking inside me that I don’t want to ask: am I being selfish? Because much as I love the idea of being a grandmother, I really don’t want to be responsible for raising any more children, and I fear that Max’s children would become, largely, the responsibility of their grandparents.
And then there is the question of pre-natal testing for DS. What does this new, reliable, non-invasive test mean for our future? Can we expect that DS will become a thing of the past? And, if so, is that a good thing? This worries me a lot. Is this a quest for perfection in the human race? What constitutes perfection? And WHO gets to decide this? Please don’t misunderstand me: I am pro-choice for women who are well informed and understand their options. My concern is that we are weeding out perceived ‘imperfections’ in our society without considering the implications. If DS becomes a thing of the past, do we then concentrate on eliminating something else? And who do we imagine will gain the most from this cleansing? Will it be the parents, who have conceived a child out of love and then endured a termination and the sadness that brings? Will it be the unborn foetus who is being ‘rescued’ from a marginalised life? Certainly none of the people with DS I know seem to be miserable or feel inadequate; in fact Max, as an example, has higher self esteem than his brothers. Or, and this frightens me most of all, will it be society as a whole that will benefit from no longer having to accommodate this disability, nor bear the financial costs that supporting people with disabilities brings?
Undoubtedly knowledge is power, and telling parents in advance that they are expecting a child with DS should be beneficial, as long as they have all the information. My concern is that most parents will panic (I know I would have) and will be advised by medical professionals to consider termination as the most sensible option. But if they knew the stories of families such as mine who, when given a child with DS unexpectedly, have overcome the difficulties and have come to not only accept DS, but to appreciate the wonders a disability like this brings with it. I’m not saying that it’s always been easy, and we have had lots of dark days, but when it comes to a reckoning, the joy, enrichment and wisdom having Max in our family has brought far outweighs our early trepidation and sadness.
Screenwriter and actor Sally Phillips who has a 10 year old son with DS put it beautifully when asked in a recent BBC interview about her experience and she said:
‘I was told it was a tragedy and actually it’s a comedy. It’s like a sitcom where something appears to go wrong but there’s nothing bad at the end of it.’
For me, that sums up our life with Max. He is funny, compassionate, deeply intuitive, creative and has higher emotional intelligence than any of the rest of his family. Before Max was born, if anyone had asked me how I would feel about having a child with DS, I would have said that it would be a disaster. Now, I consider it to be a delight, a privilege even, and I know that the world is a better place with him in it. So, I guess my point is: Yes, bring on the new testing if you must, but PLEASE make sure that every family who gets a positive result has all the information at hand before choosing their course of action.
So, it’s time for me to get off my soap box now and throw it over to you. Please, share your thoughts, feelings, opinions and be as brutally honest as you want to be. I want to hear from you, all of you – those of you who have a loved one with DS and those of you who don’t. I need all your wisdom and insight to help me get these issues into perspective. I don’t expect to have a lightbulb moment here, but maybe with your help I might be able to start to make sense of it all. I certainly hope so.