I saw you, person who has the syndrome called Down’s syndrome (it is also called Down syndrome), and I wish to say simply that you are my brother or my sister. I am glad to have you around. I saw that you needed some extra support, but not as much, I noticed, as the support given to the rich by their hoards of servants and employees. I saw that some time and money goes in your general direction, but not as much, I noticed, as gushes through the pipeline to the successful, the “professional class” and the super-citizens, the “leading X of their generation”.
I am not an expert in the things that are characteristic of your situation, and I am certainly not an expert in you. I just noticed you around. I got the feeling I am not as good as you at expressing affection without awkwardness. Sorry about that. I got the impression of a certain gentleness of spirit about you, but I have heard that you also have your frustrations and have to learn to manage anger.
I saw on a website introduction to the subject of Down syndrome a section labelled “screening”. There is a practice called “screening”. It is associated with phrases such as “risk factor”. You see, there is a “risk” that the human population may, in the future, have the occasional person with Down syndrome in it. There may, especially for older mothers, every once in a while, be created someone with one more chromosome, someone who will not fit the picture for fashionable beauty, and who will need more caring or a greater commitment, and who will find it harder to become independent. Someone who may well not become a leading scientist or lawyer, footballer or doctor; someone who will serve in more humble ways. Someone who will stay at home for longer and won’t manage scintillating academic conversation, but will know how to see the comic side of things.
So all this is a worry.
So we have “risk” and “screening”. The “screening” is neutral, you see. It just gives information. It gives a more and more reliable answer to the question, “is this fetus a fetus with Down’s syndrome?”
Why do they want to know? you may ask. Is it perhaps because it gives us time to be prepared? Time to decorate the nursery and plump up the cot? To make arrangements at work and learn how to be a good parent to someone with different needs? Well no. “Screening” is not usually used for that. People want to know for another reason. They want to say, “this is not fair; this would not be fair—for me to take on this responsibility. I am not ready; I have other projects that I feel in fairness that I should be allowed to pursue. I don’t accept this outcome. Having thought it through, I judge, in all honesty, and with no easy answer, that it would be more acceptable for this fetus to be killed than for it to be allowed to grow.”
I am sort of pretty unsettled by that. I’m not saying I know what to say. But I want at least to talk about it. Not just with you. With others too. You see I admit there is some truth in the idea that this parent has been offered an unfair choice. I think we do need to take action, to acknowledge that there is unfairness here, and act to reduce or remove that unfairness. We could think about state-funded nannies, for example, or bumping up the general idea that families don’t have to manage on their own. We could reach for a culture in which adults are wise about the big picture of their life’s trajectory, and do not unnecessarily postpone parenthood. But that is not the conversation being had. Instead we have isolation and silence, and the clinical test.
Again, I’m not sure what is the truth of this, or what is the right way. I’m just very uneasy about the way things are going. I learned from a television documentary that in Iceland the rate of terminations for Down’s syndrome pregnancies is 100%. That looks too much, to me, like the obliteration of difference. It looks too much like the view that the future, “better”, society, will be made of lots of physically fluid and academically sharp people, with obstacles to their professional development removed, and no need for them to give of themselves to a small percentage of others who came along for a different ride.
But if that vision is not a better society, then why isn’t it? one may ask.
It seems to me that there is a strange but powerful effect when you add to a community of good-hearted people one or two who are slower with the technical details and may need things explained, but who may have better priorities. It seems to me that when this happens everyone grows a little. People begin to think a little differently and are lifted out of themselves. Am I right about this? I would be interested to hear stories.
Isn’t the better future one in which the school classroom, and the trades union, and the houses of parliament, can enjoy this kind of richness?
Years ago, out on a walk, as I approached a stile I had to wait while someone was climbing it from the other direction. After stepping over, instead of stepping down they jumped towards their companion, to be caught and share a hug. The companion was, I assume, their parent. The jump-and-hugger had Down’s syndrome, I think, judging from their appearance. They were doing just what many children do. Only they were doing it older, when they were almost as big as their dad. The dad staggered a little but received the leap in a gentle way. He seemed a little exhausted.
That little episode has stayed with me, because I think it may be one of the beautiful things of my life’s witness. Not because the hug was wholly welcome to the dad on that occasion; I judge it was not. What was beautiful was his gentleness and his child’s confidence in that gentleness.
After posting the above, I learned the story of a friend’s sister which is told here: