We stand on a precipice.
Soon we may see the eradication of types of people who have been part of us for as long as being us has meant being human.
People don’t like talking about this.
I know that. The morality of this is complicated and overlapping.
It is bound to be uncomfortable.
But we have to talk about it because when we don’t, when we hide behind ‘it’s a difficult personal decision and nobody else’s business,’ we know already it is genetic diversity that loses.
90% of parents who find out their child will be born with Down’s Syndrome choose to end pregnancy. As tests for DS and other genetic differences become less intrusive and dangerous to the foetus this percentage will rise.
In Denmark where such tests have been available for longer the abortion rate for children with DS is 96%. In Iceland it is nearly 100%. As DS and other examples of genetic diversity become rarer it is increasingly less likely mothers pregnant with such children will give birth to them. This is because knowing your child with DS may never get the chance to meet another person with DS drastically changes the grounds on which decisions are made.
Having any child is scary. Having a different sort of child is very scary. Knowing you and your child have to make this journey alone may prove to be too much for many of those who might otherwise have been open to it.
Those of us who believe Down’s and Williams’ Syndrome represent different sorts of people rather than diseases should all be alarmed.
There seems little chance law will step in. Our only hope in keeping such people with us is to convince those with babies who test positive to continue with their pregnancies.
It is very easy to see why most choose not to. The whole language around people of genetic diversity is slanted to portray them as problems. Tests outline the ‘risk’ of having a condition and parents who are deemed ‘at risk’ are typically presented with an alarming list of deficits, from learning difficulties, to physical ailments all the way through to a limited lifespan.
Despite this we all at least pretend to be positive about genetic diversity. We like videos of such children walking for the first time, or being helped by their abled peers, and we love to cry together when we see videos of them singing karaoke with their mums in cars.
My suspicion is fundamentally we really do want people to have children like these but we really don’t want it to be us that has them.
A significant reason for this is the voices of those sharing lives with the genetically diverse are too quiet. We hear little about day-to-day experiences and what we do hear is often slanted towards challenge not joy, with parents of such children seemingly doomed to lives of noble suffering. Which is a shame, because sharing life with someone who sees the world in a radically unfamiliar way is amusing, fulfilling and inspiring.
A fortnight ago my two-and-a-half year old daughter left our table in the pub to go and eat dinner with a stranger. She got down from her chair, marched over to someone who was dining alone, clambered up into the chair opposite and helped herself to their chips. All the while she babbled, cooed, scribble talked, and laughed and grinned until her dining companion was utterly in love. My wife and I still collapse into helpless laughter when we remind each other of it, which we do a lot. A week ago my daughter approached a couple at the village fete and made them dance with her. She led the moves and wouldn’t stop until they’d copied them all, while her grandmother and I watched with a pride so fierce it brought us to tears.
My daughter’s condition means she’s likely to still be doing stuff like this when she’s sixty. To me, a person who often feels so awkward with new people at parties I struggle to look them in the eye, this sort of behaviour is an unfathomable wonder. Of course it may be tougher to manage when she’s older but I don’t think it’ll be any less of a joy.
And however challenging it gets it won’t change how endlessly fascinating it will all be.
We are blessed with an unusual child. One whose wires are connected differently. A person whose notes are arranged to play songs in a different key. A person who sees the world through lenses we will never see through no matter how hard we might try. Instead of empathising we get to pay attention. We get to watch and to wonder, to marvel at the mysteries of creation in its fullest sense.
Knowing all this how can we not be sad and angry when we hear there are less and less people like my daughter being born? Knowing all this how can we do anything but shout as loud as we can about how wonderful it is to walk the world with someone who sees things utterly differently to the rest of us?
Long before Bessie I wondered what it would be like to know someone whose brain worked in a completely different way to those of most people. I used to wonder what it would be like to see the world like an Einstein, Mozart or one of the Shelleys.
My world is one in which I don’t imagine.
I live with a person like this and for all the challenges life with her may bring the gifts she brings are too grave and joyful to ever want to change.
There she is in the room next to me. I listen to her breathe as she sleeps, as I go on thinking endlessly about the great mysteries of humanity.
This must not be a warm but empty feelgood piece.
There has to be a sharp ending:
If you believe in genetic diversity and you find yourself with a decision to make, and you aren’t sure what to do, please think ‘if not us, then who?’
Remember if you choose to go on, you won’t be alone. We’re here. We’ll always be here.