What Kind Of Cure Is Necessary?

Author: Mariana Cervantes-Burchell

Roughly one month ago, in July, I woke up to the news on the radio that scientists in the US had made a breakthrough in being able to switch off the gene that causes Down’s Syndrome. This, they added, provided hope for gene therapy in the future for people with Down’s Syndrome. My immediate thought, as I lay alone on my bed was whether I would really not want my son Carlos, who is four and has Down’s Syndrome, any other way. I was really struck by the power of this thought. 

A second, powerful thought came to my mind: what kind of message is sent to people with Down’s Syndrome, their families and loved ones, and society at large, if scientists and the medical profession suggest that Down’s Syndrome is something that needs curing. A further thought then branched out: this gene therapy would be a great breakthrough if it could indeed provide cures to the more prevalent and serious illnesses affecting many people with Down’s, for example Alzheimer’s, early dementia, serious heart conditions and Leukaemia. But, I went on to ask myself, would it ever be possible to isolate the specific genes for these diseases so that in removing them, only they would be removed, leaving intact the very individual personalities of each person with Down’s?

By the time I went down for breakfast, a whole lot of thoughts had run through my mind. Then, without planning for it, came reality check: my little boy came over to me in the kitchen, his lively, loving, fun, mischievous and enquiring personality right there in front of me. A very powerful thought immediately struck me: “I don’t want his personality to be lost to gene therapy. I don’t want to mess about with his genes if that’s going to mean that the outcome is that neither he nor us who know him, will recognise him anymore.” 

So there are dilemmas. Because in the face of such high numbers of people with Down’s succumbing to Alzheimer’s or dementia at such a relatively young age, I have also asked myself whether I would let my son – and us – run the risk of him developing, say, dementia, if there was a gene therapy available that could prevent such a condition. But if on the other hand, the therapy runs the risk of turning my son into an unrecognisable individual, it is hard to imagine that this could be any better than Alzheimer’s or dementia. I would not be prepared to put my son forward as a ‘guinea pig’ in order to find out. 

The issue of putting an individual with special needs forward in that way leads me to the next point. One of the issues faced by people with Down’s Syndrome concerns the limitations to their mental capacity to make decisions for themselves, which is one of the reasons why they are so vulnerable and easy to be taken advantage of – haven’t they, through the generations, been at the receiving end of ignorance, prejudice, hatred, fear and discrimination, ending up isolated, abused and neglected in an inhuman, cruel and systematic way? This may have changed in this country, and great progress has been made towards awareness and understanding; but we still have a long way to go. The fact that over 90% of pregnant women in the UK who are given a positive diagnose of carrying a baby with Down’s have a termination, has very much to do with where we still are as a society.

I realise that some people speculate or even assert that people with Down’s Syndrome would welcome a gene therapy that could do away with the condition – whether the therapy is applied to embryos, foetuses, or at some point after birth. Such view fails to see that each individual with Down’s Syndrome is different, just like each one of you reading this paper. The quality of life of a person with Down’s has much more to do with the extent to which they are loved, accepted, supported and helped to thrive, as is the case with typically developing or developed individuals like you and me. To illustrate this point, some of you may know someone, without any overt special needs or disabilities, who would like to get out of their skin, or who constantly betrays the difficulty of their life circumstances by drinking too much or taking drugs, by shopping or working too much, by abusing themselves or others in some way or another. Then again you may know – or be among the lucky ones – who have happier circumstances, or who have resources to deal with the difficulties that life throws. As the social beings that we are, there is something in the quality of the relationships we have throughout our lives that is defining to the way we feel and to the extent to which we are able to accept ourselves, regardless of the level of physical or mental abilities – in fact our abilities are enhanced by good parenting, good support and positive attitudes towards our own, very individual ways of being. 

It is possible that those who feel relatively happy in their own skin, or who feel they have the resources to take on the challenges of life, are also better able to accept the lives of people with Down’s Syndrome, and don’t need to resort to the idea that the condition is some kind of social ill or aberration that needs to be eradicated. This is not to say that it isn’t challenging or tough to have a child with Down’s – it goes against many of the expectations that most of us have about what having a child is about, and I personally feel that it constantly challenges me to reconsider those expectations and to accept the difference that comes with my child’s condition – although here I must stress that we are all different. 

To suggest that it is cruel and selfish of parents or carers not to want to “cure” a person with Down’s from the condition is to ignore the fact that many people with Down’s lead contented, happy and/or fulfilling lives. Indeed, it is important to ask ourselves whether society at large would not be acting selfishly in trying to eliminate the condition of someone like my son because it is society that cannot come to terms with it. My son Carlos is most frequently described as a “happy boy” (or, in the earlier days, as a “happy baby”). We didn’t suggest that label to other people; this has just been their observation over the years. As to the feelings that he arouses in people, love, protectiveness and friendship loom large among those around him. This, of course, comes along with more difficult sides to him; he can be stubborn and he has a tendency to throw and cast things as if they were soft balls, which I find particularly exasperating; he is also taking longer to understand why he needs holding hands to cross the road. Sometimes I feel like my life is made up of repeated explanations and praises to my son because it takes that much more for him to retain what he is learning or what he is told. This can be both frustrating and disheartening at times. Yet other times my heart swells when I see him learn, do something new, expand his vocabulary (my son is among the many children with Down’s growing up in a bilingual household) or retain some new knowledge. There may well be a lower IQ, but it appears that there is an emotional intelligence that can be higher among people with Down’s than among typically developed people. That is something so vital to human welfare, that among the many things we can learn from people with Down’s – and from life – that is top of the list.

In the days after listening to the news on the success in switching off the extra chromosome, I read media reports and I read the Abstract written by Jeanne Lawrence and her team of scientists who succeeded in switching off the extra chromosome in Down’s in their research. The Abstract begins by stating that “Down Syndrome is a common disorder with enormous medical and social costs...” Perhaps I wouldn’t have made much of this opening statement if I didn’t have a child with Down’s. Perhaps if I wasn’t aware of the difficulties our society faces in accepting that the lives of people with Down’s are worth having, or if my son and other people with Down’s were not such vulnerable members of society whose fate is so dependent on the will of people with usually higher IQs and often limited good sense. Perhaps if the medical profession could truly demonstrate that they are not biased against babies with Down’s being born, or maybe if they got off their high power horse and instead empowered parents to make truly informed decisions about their babies. Perhaps if they stopped talking to pregnant women about the “risk” of carrying a baby with Down’s Syndrome, as if they were carrying a cancerous tumour that must be removed, and not a life full of potential, opportunity and love.... Perhaps then, I would not take issue with the opening line of that Abstract. But in this problematic context, that opening line reinforces the message that Down’s Syndrome is an undesirable sort of abnormality that needs to be eradicated.

I keep wondering whether what Lawrence and her team really meant to say is “enormous economic costs” rather than “enormous social costs”. Perhaps the term “economic” was replaced with “social” because it was felt to be too crude a way to express how problematic people with Down’s can be to the economy – and in the process, equating “economy” with “society” as if they were the same thing. It is certainly costly in a financial sense to pay for the extra medical support and the care and therapies that people with Down’s need. But one thing is to have bills to pay – and the difficult decision over who pays them – and quite another, to translate these bills into an “enormous social cost.” The more I think about this, the more I am troubled and frustrated by the way in which the economic and the social tend to be blurred, often to the detriment of the social. I can’t help asking myself how come the US and the UK, two of the most affluent societies in the world, struggle so much to value the importance of care and medical support for those who most need it. To put it briefly: what is the real value of a wealthy economy if its society is not able to be more inclusive and compassionate?

As a society, we hugely value the material things we can get; we talk and hear about economic growth; we look down on struggling economies and we fear falling that low. Meanwhile, we fail to appreciate the social value of the relationships that are built between individuals with Down’s Syndrome and their families, friends, local communities, schools, employers, colleagues, service providers, etc. Those who dedicate their lives to working with and supporting children like my son are part of what I think of as “the social economy of care”, a term that came to my mind in response to the Abstract’s description of Down’s as having “enormous social costs”. My response is an attempt to highlight the invaluable dynamics, the building, at home, in the local community, in the wider society, of a better appreciation, of a greater understanding, and of a crucial component to real quality of life: helping others. 

Leave altruism to one side. Helping others is a precious thing, but not just because it does something for others. It does something for us as we help. Our lives acquire more meaning, our connections become stronger, our ability to understand and accept, to recognise the pain and to feel the joy more deeply grow out of this helping. Moreover, I have learned as Carlos’s mother, that there is a lot of taking on my part: I take strength, love and joy from his love, his growing up and his joy, and I take so much more, that there is not enough room in this paper to convey it. I have come to know myself better as I have experienced the joys, frustrations, excitement, pain and other emotions as mother of a child with Down’s. 

I have an older daughter aged 10, who is typically developed, and she can also pull at my emotional strings in every direction. But with Carlos it’s like having a magnifying glass. And perhaps this magnifying glass is at the heart of why some may think that we should do away with Down’s Syndrome. In looking at people with special needs, we are challenged to confront our own limitations, our own sense of inadequacy and the fact that each and every one of us is far from achieving perfection. In seeing these “challenged” individuals, we run the risk of looking too closely into our own “challenged” aspects. 

A large proportion of society may wish to see off “disability”, perhaps as a wish to do away with its own “disabilities”. But will we be left with anything better? For in the end, we all have disabilities, limitations, in one way or another. And we each have strengths and virtues, whether we have Down’s or not, and that is what makes us human. Do we need a cure for that?

The publisher is The Centre for Welfare Reform.

What Kind of Cure Is Necessary? © Mariana Cervantes-Burchell 2013.

All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.

Article | 30.11.08

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