There is very little written about the political role of Down syndrome (DS), and how it fits with the lives we live and the decisions we make about the way society is run. There are numerous medical and self-help titles, there is also a plentiful supply of books that address disability from an academic standpoint – this aims to be neither of those, but rather a political title that raises concerns about how the state and society treats people with Down syndrome and asks some questions about how, and why, this could change for the better.
I have had the great benefit of being helped with my understanding of society by my very beautiful five year old daughter who also happens to have Down syndrome. She has proved pretty much everything I ever heard about the condition wrong as she grows up. This is not a book about her, though she may have influenced me, and I own up to that now.
This is not a ‘parent’s book’ of experiences, as I did not want to write a personal memoir about bringing her up. It is a book about a society that may or may not let her play a full part, may disenfranchise her and not let her fill her full potential. Many people never manage to feel they have lived a full and worthwhile life, and although of course I’d like her to, I’ll be fine if she does not – not however if it is due to prejudice and ignorance that is standing in her way.
Worldwide, it is estimated that over 5.8 million people have Down syndrome. Down syndrome ignores any divisions of race, class or age. Approximately one in every 1,000 babies has Down syndrome; in the UK there is estimated to be 60,000 people living with the condition (Down’s Syndrome Association) and in the US 400,000 (National Down Syndrome Society (NDSS)). In the US life expectancy for people with Down syndrome has increased dramatically; from only 25 in 1983 to 60 today (NDSS).
Society has come a long way in the last 20 years; we have for example seen the closure of long stay hospitals and move to care in the community, which saved many people with Down syndrome from the indignities of communal life. There have been considerable increases in medical knowledge about the syndrome, and there have been steps taken to include children with DS in education, when they were excluded entirely until the early 1970s.
Medical advances have meant that heart problems often synonymous with Down syndrome are far more easily corrected, (one of the reasons that life expectancy has been extended well into normal spans). Medical research also proving, that having an extra chromosome seems to protect against some forms of cancer. Having Down syndrome is not painful, and it certainly involves no suffering. Yet public health policy dictates the measurement of the ‘risk’ of bringing such people into the world at all, and permits termination, as a result, to the moment of birth itself.
I must underline here that in no way is this book anti-choice, I believe there should be a fundamental right for all women to have an abortion on demand. Rather part of this book examines a ‘health policy’ which takes women on a route to termination for Down syndrome which does not facilitate an informed decision.
Education has changed considerably and there have been some green shoots of inclusion since the 1970s. For many the experience has been mixed and many people with DS are still frequently denied effective access to mainstream education.
Education as a whole has become more and more politicized and the way in which pupils with Special Educational Needs (SEN) have been treated, personally and by policy, has become tangled up with an emphasis on measurement and league tables.
Now we are in a position where the new coalition government in the UK talks of ending a ‘bias towards inclusion’, this is an opener to a debate that is likely to become very significant during the term of the administration. If schooling as a whole is to become remodeled and it’s crucial that some pupils don’t get left behind on the way.
Until very recently children with Down syndrome were thought to be unable to learn to read at all. Try to think about the world around you without using language, difficult isn’t it? – We learn to interpret the world around us though language.
People with Down syndrome have a very strong bias towards visual learning; something only discovered relatively recently.
This bias is so pronounced that such people find learning speech and language very difficult indeed. Visual memory is good however and where language is lacking, reading may in fact be able to become a great way to help interpret the world.
This visual bias could be a boon in a society that has moved in that direction en masse – the internet, 3D films, video games and TV – we have transformed to being a society based primarily on visual stimulation and interaction. Often the best work open to people with Down syndrome is limiting, menial and banal, yet when given the resources people with DS show their talents as actors, photographers, artists, stained glass window makers, speakers, writers; expressing themselves in as many diverse ways as anyone else in society.
ISBN: 978-1-84694-613-4, $14.95 / £9.99, paperback, 89pp
EISBN: 978-1-78099-071-2 $9.99/£6.99, eBook
Author: Kieron Smith is father to Tanzie (who happens to have Down syndrome) and was involved in the incident with comedian Frankie Boyle. He is MD of The Book Depository, the UK's largest specialist online bookshop.