I try, when writing about things which could be construed as being informed by personal experience, to make sure that I take as an objective and balanced position as possible. Using secondary research to back up assertions and philosophical work by people, much deeper thinkers than I could ever be, I attempt to explore the bigger questions of humanity and morality. In this I may or may not succeed.
There has been a very welcome debate around Down syndrome prompted by Sally Phillips’ BBC2 documentary — which was, I believe, both overdue and the explicit intention. Superficial criticism that it was emotional or partial ignore the fact that it took an emotional appeal to get this discussed at all. (Hadley Freeman felt that this was too extreme “it is genuinely shocking that BBC2 decided to screen a documentary with such a blatantly anti-choice message.”)
In the resultant debate, there seems to me, to be many moral absolutes being asserted.
I think there are a number of beliefs that can be held simultaneously, which make this more nuanced and complex than it can initially appear.
1. This debate needed is broader than just discussing abortion and screening, but these issues are also important to discuss.
2. The new test is indeed better than amnio testing as it removes the risk of miscarriage.
3. That society can, and should, decide how late it is legitimate to terminate any pregnancy, however that shouldn’t undermine a woman’s right to choose.
Then there are slightly more difficult issues.
a. People with Down syndrome do not often get fully included in society, in mainstream education and work. There are stigmatising images, stereotypes, language and assumptions about people with Down syndrome (and often other learning disabilities) which should be addressed. Tropes such as ‘the eternal child’, prompting questions of ‘who will look after them when you’ve gone’ are trotted out, for example.
b. There are definite assumptions about some people having more value than others. This I find more troubling. One view which has stuck with me was expressed by Professor Simon Baron-Cohen who made the distinction between Autism and Down syndrome when he said that:
“If there was a prenatal test for autism, would this be desirable? What would we lose if children with autistic spectrum disorder were eliminated from the population?” he said. “We should start debating this. There is a test for Down’s syndrome and that is legal and parents exercise their right to choose termination, but autism is often linked with talent. It is a different kind of condition.”
Were the national screening programme to start to screen for autism would people feel the same or differently?
Anne Furedi comments that:
“Another hypothetical problem is something that many people might not see as a problem at all: that is, a future without any people affected by Down’s syndrome either because all women opt to be screened and universally choose to end affected pregnancies, or because through genetic manipulation it becomes possible to alter the affected chromosome to eliminate the abnormal third expression.”
I believe there is a human obligation to include everyone in a participative society. Otherwise, the risks around social stigma for some groups of people could be so severe that all of us will be damaged.
We are all unique, all have different genes, and in no way do our genes indicate our worth, ‘Someone with a high IQ may be vicious, selfish, lazy and slovenly, while someone with a lower score may be kind, helpful, hard-working and responsible.’ (Dobzhansky 1973).
I’m going to break my own rule about not talking from experience just briefly. Before my daughter was born I was very much of the opinion that intellectual achievement was everything. Now I don’t. I still value that as very important, but, I also appreciate humanity more — all of it. She and I actually think in very similar ways, and I don’t know if that’s the DS or that she’s my daughter — we both are extremely lateral in our thinking, and often with a strong bias towards visual learning. She is more like me than she is like a ‘genetic condition’.
Yes we must have the choice, but we must also bear the responsibility of inclusion, for all of humanity, which this necessitates. If the debate now underway helps us take some steps towards a society more contemplative of inclusion, of all ‘difference’, then that is a huge step forward.