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A World Without Downs Syndrome: If if makes you feel guilty, it’s doing its job

October 6, 2016

Throughout this entire documentary, Sally Phillips tactfully didn’t use the major buzz word associated with the subject. I’m not tactful, so I will: eugenics. 

Eugenics is the practice of breeding out people with certain “flaws”.

It is controversial and has been popular among unpopular figures throughout history. Deleting that word from our description of the act of screening out Downs syndrome is just a way of disguising the uncomfortable truth of it.

Simple terms create negative controversy and backlash; people who don’t like the comparison build a brick wall of denial around themselves. They do so usually for personal reasons, which should be put aside by impartial observers.

Unlike typical eugenics ideology, which suggests selective breeding (or in more modern interpretations, genetic modification), screening for Downs allows the fetuses to be aborted – and they can be aborted at any time up until birth. This is probably too grim for your average eugenicist.

The usual rules of “viability” in UK termination law do not apply to Downs babies, because the condition is counted as serious. When talking about a being that is obviously sensate, I feel like abortion is not an accurate term. It’s actually euthanasia, which is illegal in the UK.

Worse, it is involuntary euthanasia on a group of people who, if allowed to be born, would most likely assert their wish to live. Downs people want their lives more than people with depression, which Sally Phillips used as an example of another condition that could be screened and aborted.

Actually, depression is a bad example; if people with depression could choose to be born without it, I’m certain they would. It is a condition which is defined by its effect of decreasing the happiness of the sufferer, quite unlike Downs.

Moreover, a depressed person has some sense of who they would be without their depression; there’s a feeling that depression is a shroud that goes over the best of you. Conditions which can be physically located inside the brain effect the whole identity. Downs is one, and autism is another.

These two are beset with debates around severity. When autism is severe, it is debilitating and long lasting, to the extent that you might think it kinder that the autistic person in question should not live. The problem with severity debates is that is not clear if you can ever screen for severity. Terminate someone with mild Downs or Aspergers syndrome, and you have simply removed a “type of person”, as Sally puts it, from existence.

Even if the condition is severe, there are two factors that influence decisions as to whether these future people should be allowed to live. One regards life span. For some reason, the prospect of shorter life expectancy seems to put prospective parents off. It seems only too logical to point out that the life expectancy of any given individual drops lowest of all if they are terminated before they are born.

This lack of logic was also displayed by the mother who chose to abort, interviewed in the program. Her reasoning was that it was better for him. However, it couldn’t possibly be better for him. It can’t be “better” to be non-existent. There is no quality to non-existence. There is no way of calculating the welfare of people who are no longer alive. There is no such thing as welfare of the dead.

She spoke about her never-to-be-born son as though he were still alive, somewhere outside of the Downs existence he would have had, as if there was a person underneath the Downs who now lives on in another plane. Whatever spiritual beliefs may inform this opinion, it does not strike me as a rational justification for the decision to abort, however much it was presented as such.

That is not to say that I am anti-choice (“pro-life”), only that I side with the view presented in the documentary; that this choice should not be solely informed by the possibility of disorder or disease. Every parent faces this possibility, no matter how many screenings they undertake; there could be an outbreak of a new kind of flu that wipes out half the population. When there are so few guarantees, this attempt to have absolute control strikes me as misguided.

I question our insistence that someone who may not live to the British average life expectancy of 81 years, or close to it, must be denied life at all. If we agree that life is an intrinsically good thing, then we agree that some life is better than none. And it is the quality that counts. Via education and advances in medicine, the health of the average Downs person has increased phenomenally. Their quality of social life depends on society’s attitude and familial support.

Downs people have bad lives,” can be a self-fulfilling prophecy. If you think it’s inherently bad, your treatment towards them is more likely to be negative. Historically, it has been like that for other “conditions” as well, like, for example, homosexuality. In addition, those with the power to make life better for Downs people will not try, thinking it a lost cause. That’s how it used to be.

The other concern, phrased somewhat callously by some medical authorities, is the idea that a non-neurotypical child might be a lot of work for a parent, well into adulthood. Sally Phillips points out that this a question of society’s ability to cope with difference, not the individual’s ability to fit in.

I will add to this that society’s willingness to accept different does not just improve it morally, but improves it as a source of innovation in technology and science. If necessity is the mother of invention, then having a large variety of problems to solve will encourage working towards solving these problems, which may in turn become the basis for even greater advances in the future.

For example, there is a device in existence that can straighten the spinal cord of a paralysed person by sending an electric current straight to their spinal cord. This allows them to stand, and therefore walk with the aid of a walker. There is also a wheelchair with tracks that can go upstairs. These are not on the market yet, but their creation has taught us things that we would never have learned if it had not been for the fact that there are people in our world who can’t walk.

Indeed, far better than screening is the ability to isolate the particular part of one’s DNA that causes problems like Huntingtons, and subsequently remove it from a fetus. This is on the cards right now. My concern is that if we can screen and abort anything undesirable, we will have no reason to develop this advancement.

Anti-choice campaigners often talk about how we are “aborting the next Einstein.” We increase that risk when we choose to disregard the possibly very great value of someone with a serious illness, just because their days may be numbered, or they may not be healthy.

In the era of Stephen Hawking, that seems particularly absurd. You could remove the motor neuron’s from him without changing his self, or his mind, and that would be an achievement indeed. Simply removing his potential existence wouldn’t be. He is also, of course, great proof that people with severe conditions can overcome them beyond anyone’s expectations, particularly in regards to life expectancy.

Even if the aforementioned advancement never took off, abortion of people with congenial defects would rob a Huntington’s sufferer of the 40 years or so of healthy life averagely predicted for them, just for the sake of eradicating the remaining years of decline.

In this case, euthanasia is actually more humane and more rational. Instead of eliminating people who might turn out for the better before they are born, you are waiting to see if their lives are ones which are wanted and valued, only ending them when – or indeed, if – the individual decides that they can no longer gain any joy or satisfaction from living.

Infrequently does that apply to Downs people, and it would be a mistake not to acknowledge that fact when considering policy; you could argue that it is one of the least harmful conditions for this reason alone. It is difficult to argue that X group of people shouldn’t exist when they consistently assert their continued wish to do so.

What you end up with then is not the moral, if impractical, concept of involuntary euthanasia, but rather the euphemistic and ethically reprehensible practise of compulsory euthanasia.

One of Sally Phillips’s scientist interviewees said matter of factly that Downs will inevitably continue to dwindle in the distant future, when individuals become able to modify themselves in adulthood. His reasoning was that no one would choose to have Downs syndrome. He is wrong. Just because a neurotypical person would never choose to have Downs syndrome, that does not mean that a Downs person would choose to be cured if they could.

Once again, we are talking about a matter of identity. As a transgender man, I am often asked: “If you could choose to be normal, wouldn’t you?” To which I always reply that it depends what they mean by normal – if they are asking me if I would rather be a normal man, then yes indeed, that would be most convenient.

If they’re asking me if I would rather have been able to remain a woman, and be a normal woman – that is to say, comfortable in a female body, with a female gender identity – I no longer understand the question. How can I desire to be something I cannot conceive of being? This hypothetical person you speak of would not be me. Rephrase the question, and what you’re asking is if I would rather be someone other than myself. No I would not. My self-esteem is not so low.

So it is with Downs people. They don’t know what it is to be neurotypical. They would no longer be themselves if they became so. How can they possibly wish for that?

A major criticism of the program is that it puts pressure on mothers. I’d argue that the aim is clearly not to put pressure on mothers. The aim is to put pressure on doctors to stop putting pressure on mothers. Sally Phillips doesn’t blame other mothers for falling for it – she almost did so herself. A fact that she explained quite well with a pair of paper napkins.

It’s the best example of how Sally’s closeness to the subject matter makes the documentary better, not worse, despite what some critics claim; you can tell that this was her experience. It wasn’t a hypothetical analogy. On a subject like this, it’s hard to think what could be more relevant than subjective experience; there’s nothing objective about the reality of conceiving, birthing and raising a Downs child.

Tellingly, Jane Fisher, director of Antenatal Results and Choices, told the Guardian that the documentary “… risks offering the suggestion to those who have [decided to end a pregnancy] that they have made the wrong decision.”

In other words, the professional line is: “Don’t tell the whole truth. You might rock the boat. We have a piece of technology that performs a function, and we’ll perform a service with that technology. That is our script we want to follow. We can’t have regular people deciding not to follow our script.”

It strikes me that, in society in general, everyone is concerned about avoiding making others feel guilty for the choice to terminate a pregnancy. I sympathise, both with the act and the sensitive attitude towards it, but sometimes it is appropriate to be guilty, even if it is an unpleasant feeling that is not desirable. Guilt helps guide future decisions. It is the compass that moves you to let others know that the choice you made may not be right for them, and has hidden costs.

For something as emotionally potent and important to discuss as abortion, we shouldn’t attempt to completely eradicate guilt. It leads to more careful consideration of a decision which will effect the entire life of multiple people. The unpleasantness of guilt may be a small price to pay for the possible upheaval of not heeding it.

Indicating to parents that they may be making the wrong decision is not unethical. If they have already aborted, the information or opinions presented may indeed make them feel worse. But in the interests of freedom of expression and social progress, we cannot avoid a discussion just because others may feel that their choices are being judged by it, even if it is a sensitive subject. There may never be a better time to have a conversation as inflammatory as this.

If potential parents have not made the decision, I would say a vocal criticism of the current system is exactly what they need. The last thing you want is for a large section of society to feel that they have been lied to about the positive realities of raising a Downs child by the medical establishment, and found out too late. That will only increase mistrust in our health professionals – something which is already happening re abortion in general, the long-term emotional impact of which is often ignored.

I’m not quite sold on the idea that screening for a condition necessarily makes abortions more likely – though it may statistically be so, at the moment. I believe that it is much more likely to be social attitudes, and doctor attitudes, that do that.

Screening could just be a way of preparing, as shown by the pregnant mother of another child with Downs, who said she only didn’t want screening to protect herself from doctor pressure. She would have had the baby regardless. If she could have had the screen, knowing the findings would be presented to her neutrally, she might have.

I would say, overall, that doctor pressure is therefore the bigger problem. Perhaps what’s needed is a general re-examination on the way doctor’s give advice.

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