Column Road

Ups and Down’s

By Helena Hanson

What do you imagine, when you think of a perfect world? I guess, a perfect world would mean something different for each individual. For me, it would be a world where humans didn’t eat animals, and where people didn’t kill each another over land or money or power or holy books, where we weren’t destroying our planet and where those who want to be different, could be. I wonder if anybody would imagine a ‘perfect’ world without disability, without genetic conditions, withoutDowns syndrome?

As it stands, one in twenty five children in the UK are affected by some kind of genetic disorder. There are also half a million people in Britain that are living with some kind of disability. It has been suggested by genomic researchers that by 2020 science will have advanced so far that many common congenital disorders could be eliminated, meaning that there could soon come a day where many conditions are a thing of the past. But, before this can happen, we must ask ourselves whether a world without disability, is something that we really want.

This question has been brought to the forefront of the media in recent days, following a documentary made by actress Sally Phillips, bringing to attention the introduction of a new NHS pregnancy screening test that can detect foetal abnormalities with an accuracy of 99 per cent. The non-invasive prenatal test (NIPT), primarily can recognise if a baby has Down’s syndrome. As is stands, 90 per cent of parents that are informed that their child has Down’s will terminate the pregnancy. When the NIPT was introduced in Ireland, the termination rate rose to 100 per cent.

Down’s, in a nutshell, is when a person has an extra copy of chromosome 21. This can result in developmental difficulties, that can range hugely in severity. In some cases, people with Down’s can be more vulnerable to health conditions, particularly heart and thyroid issues. About 750 babies are born each year with Down’s syndrome in the UK, and there are an estimated 40,000 people living with the condition.

The issue that Sally draws attention to during the documentary, is not that the NIPT test is available. The issue, she maintains, is that parents are not given the appropriate information when screened, to help them make the decision whether or not to terminate a Down’s baby. As shown during the film, parents are only given a leaflet, simply listing all potential health problems and difficulties faced by people with Down’s. Parents are not made aware of people like Sally’s son, Olly, who is healthy and happy and lives a wonderful, fulfilling life, despite his condition. They are not put in contact with other Down’s parents or people who can give a reliable insight. They are given only a piece of paper. In some cases, parents are simply advised by doctors to just terminate. It was difficult not to wince during the film as a doctor referred to Down’s children as a “burden that lasts for a long time”. I couldn’t help but wonder how many Down’s people watched that moment, and how it would feel to have your life described as a burden.

Of course, we have come a long way in terms of how we respond to people with disabilities in society. That said, with pressure coming from doctors, and statistics as bleak as those mentioned, it must be considered how this must make those living with these conditions feel. Like they are a ‘burden’? Like they should have never been born? Like they are the kind of people we don’t want in our society? My heart aches at the thought.

If and when the elimination of congenital disorders becomes possible, where do we then begin to draw a line around who is a desirable member of society. Somewhere, the notion has emerged that those different to us must not be as good as us, and must not be as fit for ordinary society as we are. But it will “eliminate suffering”, the advocators will cry. But, how does one moderate to what extent we eliminate the supposed suffering. What becomes of those who have a disability that is not congenital? A condition that is assimilated over a lifetime? Those who have car accidents, diseases, strokes and so on. If a person acquires a disability, or condition, rather than is born with one, do they then become an undesirable member of society too?

Thus, then some sort of imperfection ‘scale’ shall be born, that will determine how valuable a life is. As it stands, it seems that conditions that effect intellect are deemed ‘worse’ than those that affect, say, physical appearance. Would a doctor actively advise a pregnancy to be terminated if a child had only minor physical deformity, probably not. Would a child be considered a ‘lifelong burden’ if they were blind? Or deaf? I don’t know. Is it then that those that are different to us, who communicate less, who learn differently, who need more help, who don’t walk or run, who behave inversely, must certainly suffer, and could not possibly have a life of enough value to be born?

It is important to consider Paralympians, disabled scholars, brilliant people, like Olly, that are succeeding and flourishing and thriving, despite their conditions. It is impossible to argue that their lives are not valuable and fulfilling and brilliant. They can absolutely achieve alongside the able bodied. “Ah, but…” say the doubters. “Ah, but they are the exception, not the rule.” They watched Phillip’s documentary and said, absolutely, her Down’s son is wonderful. Absolutely, parents would be blessed to have a child like him. However, he is, really, quite abled. He can walk, talk, play football, make jokes, nobody would ever suggest his life was not worth living. This creates then the notion that those living with less severe conditions have a life more worth living, implying that those with more complex needs do not. This means, in the mind of those critics, there is a distinction, between disabled lives that are worth living, and disabled lives that are not. I didn’t want to use the word fuck in this week, but who the fuck are we to decide that?

This is not to say there is no struggle, of course there is. I have a cousin with Down’s syndrome, and I know that his needs can make the smaller things in life that much tougher for those around him. I know that things have not, and will not always be easy for his parents, and for him. I do know, however, that he brings joy, and laughter, and extraordinary light to all of those people around him, and to imagine a world that wouldn’t accommodate him is crushing.

A study in 2011 concluded that 97 per cent of siblings report being extraordinarily proud of their Down’s brother and sister, and 99 per cent of adults with a Down’s child say they are happy with their lives, as well as 79 per cent of parents having a more positive outlook on life since their Down’s child. We must again ask the question why on earth we would believe that the world could be a better place without the unique wonder of those living with Down’s.

It is difficult, in essence, to write this, without feeling I am advocating towards pro-life. This is not the case. What I do not mean, is to suggest that we remove choice, neither from the use of NIPT nor the right to decide to terminate a pregnancy. I agree with both of these wholeheartedly. Choice is fundamental to all of this. Choice is the key. But in order to have genuine choice, parents must be given enough information, to make the right decision for them, whatever that may be.

We must call for discussions, during which we step back and acknowledge, appreciate and respect all of our differences, as individuals, and as human beings, looking beyond our physicality and appearances and learning differences, maybe this is what would truly make a perfect world.

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