When I was six my primary school teacher read us a story about a magical ring which granted your wish when you rubbed it. I don’t think I really believed in magic, but when my teacher revealed that she possessed the ring and we would each be allowed one wish after break time that day, I took her at her word and could hardly contain my excitement.
I did not have to ponder long. My mother had been very low since the birth of my sister a year before. So I knew my wish immediately: that my sister Anna would no longer have Down’s syndrome. I pictured the look of delight on my parents’ face when I explained to them when I returned home from school that evening why Anna had been transformed into a “normal” baby. The grey cloud that had hovered over our home since she was born would dissipate and we could all return to a life of sunshine, health and happiness.
Naturally, I felt disappointed when I rushed back into the classroom after break only to discover that my teacher was joking.
Britain has come a long way since 1991 in supporting families who have children with Down’s – at least once the child is born. But this condition more often than not makes the headlines because of uncomfortable revelations about the ways we regularly discard these fellow human beings through a high rate of abortions or abandonment by parents.
The latest headline appeared when the truculent Richard Dawkins prompted Twitter outrage when he told one of his followers that if she discovered that she was pregnant with a Downs baby she should “abort it and try again”. He added that “it would be immoral to bring it into the world if you have the choice”.
When someone responded to Dawkins by asking if he would say the same for people with autism, he replied: “People on that spectrum have a great deal to contribute, Maybe even an enhanced ability in some respects. DS not enhanced.”
Dawkins’s savage utilitarianism is shocking, but not surprising. He is merely stating the logical conclusion of society’s rationale for justifying abortion up to birth on the grounds of disability. Ask the average Briton and they will argue that, aside from alleviating the burden on the parents, aborting a baby with Down’s is an act of mercy. Those of us with pro-life sympathies will always protest against this, arguing that we know many people with Down’s who have exceeded all medical expectations, living happy, fulfilling and independent lives. Of course this is all worth pointing out, but we are still missing the point. We should not defend the right to life of people with Down’s because they are courageous angels. Rather, we should do it simply because they are human beings just like us.
It is convenient to forget that, while many children with Down’s will attend mainstream schools, have a job and manage alone, some will not. My sister Anna fell into the more promising category in the first years of her life, though it’s easy to forget that now.
A few years ago I was incredulous when I discovered some old photos of her in classic toddler pose, standing up by herself as she held on to the edge of our sofa in her old booties. I had forgotten how much progress she made in those first years of her life and how she would have been held up as a prime example of the rapid progress children with Down’s can make: living proof that they deserve better than abortion.
But Anna was diagnosed with a rare form of epilepsy when she was six months old and this later caught up with her. She turned 23 last month and is now in a wheelchair, depending entirely on the love and good will of others for her basic daily care. The epilepsy, known as Lennox-Gastaut syndrome, is so debilitating she is hydrated through a feeding tube, through which my parents also administer anti-epileptic medication twice a day.
This picture of a young woman is bleak at first viewing, especially as it does not seem to fit the “against all odds” frame that we like to talk about. Watching a loved one suffer an epileptic seizure can make you physically ache with sadness and the strain of care on my parents is sometimes unimaginable. But what is also unimaginable is what Anna has done for every person privileged to know her.
People like Anna make saints of others. It never fails to move me when I see someone – sometimes a person I’ve dismissed or underestimated – approach her and talk to her with care and respect, although she cannot understand or respond verbally. Nothing makes me happier than the rare occasions I take her to respite care for the evening and see a staff member’s face light up when she arrives and they tell me how much they love my sister.
I was always disappointed that Anna could not attend the same primary school as me. But a half day was eventually negotiated every Wednesday afternoon. On Anna’s first visit, as we wheeled her through the playground, swarms of children followed to say hello and she soon became a kind of celebrity at the school.
Like any child, Anna has brought both pain and happiness to my parents. After all, we all know that the able-minded and able-bodied can also cause their parents’ considerable grief. But I realise, in my late 20s, that while many peers’ parents are divorcing or growing apart as their children leave home, Anna strengthens my parents’ marriage in a way that the rest of us children could not. A disabled child demands the unconditional love and support of both its parents, and I am privileged to witness not only the best example of a mother and father but also of a husband and wife.
When I reflect on my wish all those years ago, I would still ask that Anna did not have to endure any pain, but that would be it. I realise now that if Anna did not have Down’s then she would not be the younger sister who, by the grace of God, effortlessly nurtures any good that exists within me. I also believe that she is happier than the majority of people that I know, who, like me, are miserable because we have too much. I mention all this because when we debate the value of life we tend to rate each individual against a checklist of mental and physical attributes. It rarely occurs to society that the individual with the least ticks is the one who challenges us more profoundly than the articulate graduate or pious priest, whose exceptional dignity leaves us humbled and dumbfounded.
It should be a comfort that among atheists Dawkins has gone from the equivalent of the coolest guy in school to Billy No Mates, precisely because of such ill-judged statements, but I still feel sorry for him. I pity him, because he can’t comprehend the inestimable value of people such as Anna and she will never change his life in the way she has the lives of others.
The way to counter Dawkins’s chilling attitude is not to persuade him of how physically or mentally capable people with Down’s syndrome can be, but to assert that the right to life is inalienable regardless of capacity. While it might be prudent to highlight the happiness and health of people with Down’s, our starting point must be to assert their common humanity.
When Anna suffers or thrives, I am affected because she is a fellow human being. And it is because she is just like me – not because she is different – that she silently prompts me to be better and braver.
Madeleine Teahan is associate editor of The Catholic Herald
This article was first published in the print edition of The Catholic Herald (29/8/14)
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