A World Without Down’s Syndrome?

There’s a very moving film made by Sally Phillips, one of Britain’s popular actors. Sally’s son Olly has Down’s Syndrome, and she’s made a BBC documentary about the wonderful life experiences of having a child with Down’s, and of the value he has for himself, and that which he brings to Sally and her family. It’s very moving. But it also makes a strong case for having children like Olly, and against a world without the condition.

The film is here, on the BBC: A World Without Down’s Syndrome? (BBC programmes are available for a limited time, so watch it while you can)

Thanks to others that brought this to my attention on a Lib Dems site. My response here is for them, but was too long to post directly.

Everyone owes thanks to Sally Phillips for this film. I disagree with some of the messages of the film, and below I refer to Sally and Olly in making my points. I don’t wish to disrespect either of them. All I can say is I am not saying anything that diminishes Olly’s or Sally’s value to themselves, or to the rest of the world.

My position is that there is some completely natural confusion around the subject, and that’s what I want to address here. 

This is the BBC programme description:

Documentary about Down’s syndrome and the ethics of pregnancy screening, fronted by Sally Phillips. This film explores the science and thinking around the proposed new screening test for Down’s syndrome and its possible availability on the NHS.

Driven by the experience of raising her son Olly, who has Down’s syndrome, Sally explores some of the ethical implications of our national screening policy. By talking to experts in the Down’s syndrome community, the world’s top scientists and including people with Down’s syndrome in the debate, Sally investigates a thorny subject that begs questions relevant to us all: what sort of world do we want to live in and who do we want in it?

When it comes to the matter of coerced screening and pressure to terminate I am totally on Sally’s side. But I’m also on the side of the women who choose to screen and terminate. I’m opposed to the stigmatisation and devaluing of anyone in this matter. But I feel the film does at least hint at emotional criticism of women that terminate, while it clearly supports their right to do so form a rational perspective.

Confusion

The confusion I see is the conflation of a condition and the people that have the condition, and the thinking that to eradicate the former is to eradicate the latter. Phrased like that it carries a Nazi-like eugenics implication of extermination and genocide. The very title “A World Without Down’s Syndrome?” looks very much like another: “A World Without Jews?”.

I don’t for one second think Sally is making that parallel. But some activists do, particularly those influenced by religious beliefs that oppose all abortions because they see a soul residing in a zygote. I won’t address that politicisation of the issue any further, but simply note that this lies in the background and motivates some people.

Sally’s love for Olly and the other Down’s people she meets is very clear. You should watch the film if you can. But when you do I suspect it will be very tempting to see things Sally’s way so that you too come to conflate the two issues: the person and some condition they have.

To get another perspective on the issue, consider how would you rank these options:

 

a – Don’t make any attempt to prevent the condition and stop screening and terminations.

b – Let mothers choose whether to screen or not, and to terminate or not.

c – Make attempts to avoid the condition, through screening and termination, or genetic engineering.

d – Make attempts to ensure every new born has the condition, through genetic engineering.

Even if people ranked (a) and (b) above (c), I doubt very much they’d want (d). Even the person in the programme that chose not to be screened in order to protect herself from pressure to abort from the medical profession, would she choose option (d)?

Clearly we do value conditions for what they are in a separate way from how we value people that are born with them.

There are genetic conditions that require that people with conditions like Down’s need help. A society could not function as it does now if everyone was born with Down’s Syndrome. It’s a condition that effects the brain such that a society of Down’s people would revert to some very early human or pre-human hominid state, and many would have a short and painful life. We do value human intellect, and we do value ‘normal’ health. We value the science and humanism that human intellect has developed that now lets us appreciate those that don’t have the intellectual capacity to do that science and humanism.

Normal Humans

I specifically emphasised ‘normal’, because it too is misunderstood. Sally asks what it means to be ‘neurotypical’ – i.e. neurologically ‘normal’ or neurologically ‘typical’ of some condition. People who might become psychopaths are normal people. They have brain conditions that lack or are low in empathy. But that’s just part of the variability of humans. It is because humans are genetic games of chance that we have such a variety of individuality, and it’s because we are genetically similar that we are all called humans.

These seemingly contradictory aspects of evolution, similarity with differences, are both necessary for evolution to have resulted in humans at all. So ‘normal’ includes a lot of stuff that, from a bell curve perspective, results in small numbers of outliers on many measures. The more ‘atypical’ you are the less ‘normal’ you are, while still, paradoxically, being ‘normal’ humans.

A bell curve is a common representation of human traits that vary fairly continuously, like height. Some conditions are closer to ‘digital’ (e.g. chromosomal) and are more obvious and distinct for that. And of course these ‘binary’ conditions can also move you into a specific region on other traits like height – Down’s people tend to be smaller ‘on average’ than the non-Down’s people that don’t have other conditions that affect height. There is a great deal of variability within people that have Down’s, so even this ‘binary’ condition can result in people that have full and enjoyable lives and some that suffer.

So, the film is about how we look at people that are this kind of ‘normal’, but rare, humans.

We have a long human history of not understanding some conditions that are either infrequent or rare. How could we understand these conditions without science. No wonder religions, folk lore and myths have sometimes demonised people with them. Desspite that lack of knowledge it hasn’t stopped many people and whole cultures valuing people that are different than the norm. A stigmatising persecutory perspective isn’t guranteed because human empathy and love wins as often if not more that suspicion and hate.

But now we can put these difference, these conditions, in the same category as other conditions that we no longer stigmatise.

Treating And Removing Unwanted Conditions

Early on Sally listed a number of genetic conditions that she might be predisposed to and asked if those conditions were really who she was, whether they define ‘her’ as a person. No they do not. Like all of us, she has any conditions she has, but is valued for the person she is. But does she regret the fact that polio has been eradicated?

Should we not attempt to eradicate genetic disorders? Part of that process involves science, and science needs data, and data can include screening.

The film goes on to where Sally brings up the improvements that have been made so that screening can now happen much earlier in the pregnancy, so making it well within legal abortion period without having to rely on an exceptional excuse. Her presentation of the opinion that “presumably this is going to mean far fewer babies with Downs Syndrome being born” finished with a disappointed tight lipped look to camera. Was there no judgemental attitude expressed there? Is Sally really saying that option (a) is the right course, because she values Olly, and that (c), or even (b), is wrong?

There’s a good chance I’ll get a few illnesses in old age because of my family genetic history. I’d like them eradicated so that there will be in future no more people like me, in that regard. It really isn’t a reflection of my value to me or my family.

Eradicating the conditions I have is not a matter of eradicating ‘people like me’. It is the eradication of conditions, so that ‘people like me’ will no longer have them.

This is the confused and even contradictory aspect of the message of the film. Olly’s condition is not who he is, and yet the film seems to celebrate who he is because of his condition.

If, as Sally thinks, Olly is a wonderful person ‘because of’ his condition, that is saying no more than: a person with cancer is all the more wonderful because of the way they deal with their cancer.

Are we saying cancer is a not a detrimental contribution to their lives, even though having it made us acutely aware of the bearer’s capacity to deal with it in a way we would not see had they not had it?

Does Sally value her other children less than Olly? Had the genetic dice given her an Olly without Down’s would she devalue that child and prefer she had Olly with Down’s? Once here, she values them all, as individuals, irrespective of the conditions they have.

I’m guessing she treats all her children with medicines if they need it and does not devalue them because she has treated their conditions. I’m also guessing that if the common cold had been eradicated before her children were born she would not devalue them for not having had it.

I think Sally’s confusion (I know, it’s driven by her love for Olly) becomes even more apparent when she brings up the extermination of the Dodo. We are not talking about genocide of a people, but the fixing of a genetic error – and it is an error. The Nazi eugenics point is implied, in one form or another, even for the most well meaning people.

Here’s where the difficulty comes in. The Nazis viewed Jews as being ‘genetically’ inferior (using their crude eugenics mode of thought). So to them exterminating Jews and people with intellectual problems was good for the nation. The worst of collectivism’s prioritisation of the state over the individual. But extermination aside, what about sterilisation? Is this where the confusion is creeping in? That the Nazis considered the Jews to be sub-Human, are we saying that about Down’s children?

Note that we would have to address that had other hominids survived with us. Sally’s Dodo point is valid in this sense if it was our ancestors that exterminated other hominids.

But in terms of human conditions Down’s Syndrome is the result of an error. But we are not talking about extermination, and to avoid going down that route we should avoid forced or coerced termination of pregnancies, or forced genetic modification.

Note, incidentally, it would not be a genetic error if humans ‘normally’ had the extra chromosome and the ‘atypical’ people lacked it. What sort of world would that be, to find that a small group of individuals out-intellected the majority of the population. I wonder if they’d want to bring the rest of the population ‘up to’ their level of intellect, or might try to alleviate some of the conditions the extra-chromosomal people suffered from. Or is this how our fellow hominids came to disappear?

Sally also worried that Down’s people should not have to “justify their existence”. Quite right. But this completely misses the point of the important distinction between us as people and conditions we have. That in itself is creating a ‘people’; it is not merely fighting for a right to continue to exist once you are born but is actually creating an identity that she wants to avoid being stigmatised.

The Message

At one point in the film Sally joins a presentation to a group in which a mother expresses her love for her daughter – a very moving moment.

But the unintended message to the children in the presentation was, “Never mind that the world doesn’t want you, we do.”

What a back handed complement. “I suppose his mother loves him” is a comic line that I’m sure Sally has come across and maybe even used in her professional life.

Is this the message to give to Down’s children? I know the event was totally about expressing love – I don’t doubt that for a moment. And it’s intent is surely to tell the rest of he world how wonderful life can be for and with a Down’s child – a great message.

I’ll have to show my ignorance here (or is it more ignorance?). I have no experience of how parents of Down’s children explain their various concomitant conditions to them. I’d welcome any views. But I don’t see anything wrong with saying, in a far less cold way than I do here, “We love you so much we wouldn’t want to swap you for the world. But doctors are trying to help mothers so that their children don’t have the aches and pains you do.” Given the intellectual difficulties of Down’s children I can’t see any benefit in explaining that aspect to them, unless they really do want to know why they can’t do as well as their siblings at school. As a say, I am totally ignorant to this aspect and would happily be put right on it.

The Stigma of Termination

The love expressed in the film shines through against the stigma of Down’s. But the counter stigma of termination dims the light at times.

In Sally’s review of the papers on her return to England from Iceland she ponders the impact on the ‘Down’s community’. That there is a ‘Down’s community’ is a transition problem that have because people, including Sally, are treating them as such, and not just as the individuals they think they should be treated as.

It’s an understandable transition, as we move from seeing various illnesses (mental illness especially) as mere conditions that DO NOT devalue the person. It’s a transition that we are going through in order to reduce the stigma of having certain conditions.

But that valuing the people is confused with a medical condition that nobody would choose to have themselves.

And that results in the film casting a worried eye on those that choose to terminate.

Better Worlds

A point was made elsewhere, not in the film, regarding the time of diagnosis:

I suspect that currently late diagnosis and the unwillingness to undergo a late termination contributes to a lot of happy and healthy Down’s Syndrome children being born to lead fulfilling lives in happy families and communities.

I’m sure that’s right. But hindsight is a wonderful thing, and it’s the hindsight of value of existing families that makes this comment on potential futures so alluring.

What about all the potentially happy people that didn’t come to fruition because of contraception? We can go a long way with this line of thinking and get nowhere.

If we are to decide some worlds are better than others (e.g. one without ISIS perhaps) then a world without Down’s Syndrome is a better world than one where everyone has it – my option (d). Whether individuals think it’s a better world without Downs than one with some Down’s, is a matter for them individually and applies only to their circumstances now. It is no reflection on them and takes nothing away from them if Down’s Syndrome is removed from the world by the future choices of women and the advances in genetic engineering.

Imagine Sally and her (imaginary) friend Jane, where Jane undergoes genetic modification to change her eggs. Sally’s grand child will come to pregnancy with the possibility of having a Downs baby. Jane’s grandchild will not. Are we really saying Jane’s grandchild is worse off? Or that’s Jane’s great grandchild is any less happy than Sally’s with Down’s?

Is Sally really saying that we should make sure we don’t emliminate the condition?

Do you lament the passing of our pre-human ancestors and the fact that we are in A World Without Lucy (Australopithecus)? Aside from evolutionary curiosity do you think the world is a worse place without Lucy and her kin, or without any of the other non-Human ancestors? Can you be sure it would be better with them? Do you feel robbed of the presence of Lucy and kin?

We have no idea how some counter factual worlds might have turned out. But there’s no reason to think that eliminating some human conditions is anything but beneficial.

Summary

The real problem we have is not with the desire to remove the condition, but the remaining stigma of people that have it, and the medical profession’s tendency to ‘know what’s best‘ for women, their children, their families.

But trying to avoid that stigma and to value people for who they are and not what they have results in a confused situation that conflates the condition with the person, a confusion expressed by the very people that don’t want to conflate the person with the condition.

They mistakenly transfer the valuing of the person to the valuing of the condition.

While this removes the stignmatisation of people with Down’s Syndrome it’s non-too-subtle in stigmatising those who choose to terminate. Add the politiccal motivations of pro-lifers and that stigmatisation can become persecution.

My position is:

Work to eliminate all conditions that have clear biological status of being faults and errors, especially if we would not naturally choose to have those conditions ourselves or would not actively seek to have all our children acquire them.

While the possibility of a child being born with such a condition exists, as long as the outcome does not result in consistent suffering for the child, let the mother decide on whether to be screened and whether to terminate. And don’t stigmatise that choice, either way.

But I’m not a mother, so what would I know? Well, I can think. And I am not incapacitated in that respect by a condition I would not choose to have.

 

 

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