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May 2012 Down syndrome and social change: The fragile nature of progressJan Gothard Greater Expectations: Living with Down Syndrome in the 21st Century, Fremantle, Fremantle Press, 2011 (368 pp). ISBN 9-78192136-177-7 (paperback) RRP $26.95. It is 150 years since John Langdon Down first described Down syndrome in 1862, 79 years since Lionel Sharples Penrose identified the link between maternal age and Down syndrome, and more than 50 years since scientists discovered that the condition was caused by a (now prenatally identifiable) chromosomal anomaly. Considering social changes in the subsequent years, especially in the second part of the 20th century, which have influenced fertility rates, Down syndrome has taken a central position in reproductive politics. People with Down syndrome and their families have also played an important role in the politics of inclusion for people with disabilities.
The voices of people with Down syndrome themselves are not often heard in these debates, so a new book by historian Jan Gothard is a welcome contribution. In Greater Expectations: Living with Down Syndrome in the 21st Century, Gothard conducted more than 60 interviews, a third of them with people with Down syndrome (the remainder with parents, mainly mothers, and other carers) between 1996 and 2010 in Western Australia. Gothard’s own family is part of the ‘community’ whose experience she documents in the book: Maddie, one of her three daughters, to all of whom the book is dedicated, has Down syndrome. Gothard’s family story becomes one of the stories in the book, as she primed a friend to interview her. The reader may feel intrigued by this and try to identify the author’s story behind the pseudonyms used but soon this becomes irrelevant as the families’ stories unfold across the book. From Trevor, born in 1943, whose family didn’t accept the practice, common at that time, of institutionalisation, to Joseph whose mother chose to proceed with the pregnancy after a prenatal diagnosis of Down syndrome in 2008, the book reflects an oral history of social change in Western Australia. DISABILITY AND THE POLITICS OF REPRODUCTIONDecline in total fertility rates in Western countries in the decades that followed the baby boom is partly associated with the tendency of women delaying having babies. Thus, women at risk of having a baby with Down syndrome—those over the age of 35—tend to have more babies than in the past. In Australia, since 2003 the fertility rate for women aged 35–39 years exceeds that of women aged 20–24 years (Australian Bureau of Statistics 2009). Down syndrome, which is represented across all race groups and socio-economic backgrounds and for the vast majority of cases there is no hereditary cause, has become a cautionary tale for women who delay having children.
The politics of reproduction are evident in the second chapter of Gothard’s book, entitled ‘Making choices’, which discusses the role of prenatal testing and the decision of whether or not to continue a pregnancy with increased likelihood of Down syndrome. In the last three decades, screening and diagnostic tests have become more accurate, less invasive and more available. Down syndrome testing is one problem area where medicine can provide some answers. As Gothard argues:
The European Perinatal Health Report (EURO-PERISTAT Project 2008) found that the rate of termination of pregnancy for foetal anomaly in European countries varies from none in the two countries, Ireland and Malta, where termination of pregnancy is illegal to 10.7 per 1000 births in France. The live birth rate of children with Down syndrome is inversely related to the rate of termination of pregnancy. Rates of termination also depend on the availability and cost of termination. Currently a new generation of blood tests that detect Down syndrome in the first trimester of pregnancy are being released, or are in the last stages of development. They aim to replace the existing more invasive techniques of chorionic villus sampling and amniocentesis. Increased competition between companies may lead to these blood tests becoming cheaper and available to more pregnant women than the small group of those ‘at risk’ for whom they were developed originally. Religion, politics of reproduction, dominant medical attitudes, women’s rights, and disability politics are all touched on in the parents’ accounts documented in Greater Expectations. The choice of an abortion following prenatal diagnosis of Down syndrome is validated by the fact that nine out of ten women do so in many Western countries. Most of these pregnancies were planned and women would have continued with them if not for the Down syndrome diagnosis. In the United States, in particular, Down syndrome is central in debates about the role of prenatal testing and abortion. Recently, Bristol Palin (2012), the daughter of Sarah Palin, and sister of Trig, Sarah’s fifth child that was born in 2008 with Down syndrome, wrote on her blog in support of the eight per cent of children with Down syndrome that aren’t aborted. She concluded by calling the Occupy Wall Street movement to take up this cause as ‘something really worth protesting’.
The use of disability rights by pro-life advocates makes some in the disability rights movement uncomfortable, especially in terms of the implications for women’s rights. Most contributions to the highly polarised debates around prenatal testing and abortion are expressed in extreme terms. There are, however, some voices that are looking for a middle ground. Tom Shakespeare (2006), for example, puts forward a liberal position on prenatal diagnosis and it would be fair to say that this nuanced approach is also evident in the ‘Making choices’ chapter. DOWN SYNDROME, DISABILITY AND DIFFERENCEDown syndrome is the most common identifiable cause of intellectual disability. In this sense Down syndrome is a ‘normative’ disability (Tomlinson 1982) as far as there is normative agreement about what it is and consequently about whether there is a necessity for special provision and support. This isn’t the case for example with autism, ADHD or a number of other conditions for which there is disagreement about their cause, how the condition is defined, prevalence of diagnosis, treatment, eligibility for special services, and so on. However, even though a child either has or has not Down syndrome and a diagnosis is definite soon after birth, the experience of having Down syndrome is not static. Chapter three of Gothard’s book discusses the many medical issues faced by people with Down syndrome. As with prenatal diagnosis, medical progress has significantly affected the experience of people with Down syndrome. The same discipline that substantially decreases the chances of a foetus with Down syndrome being born increases life expectancy and quality of life of the child after he or she is born. More and more people with Down syndrome experience older age and new branches of medicine are now involved in providing care and treatment, with the notable example of research on Alzheimer disease and Down syndrome. Parents have been instrumental in Western Australia as elsewhere in establishing and advocating for services for their children. These services include early intervention, parent support groups, therapies, and of course educational inclusion which:
It is at this stage of the book that the voices of young adults with Down syndrome are added to those of their parents and carers. Their experiences of education, positive and negative, of being different but included or of being bullied bring to the fore the question of inclusion into what? As Rebecca says about her high school years:
The promise of inclusion, educational and social, has been a demanding and somewhat elusive one. Families that strive for inclusive experiences for their children with disabilities are fully aware they will need to fight for them. It is a ‘journey’ towards inclusion rather than a destination reached. This struggle may be of value not only at a personal level, but at a political one in the sense that those who have striven pave the road for other families who are to take the same journey, hopefully with greater ease and speed.
In many countries around the world the last five decades have seen the proliferation of services that support the inclusion of people with disabilities. A complex network of public, volunteer and private services and advocacy groups exist in most countries to provide health, education, employment, transport and so on opportunities through a combination of universal, mainstreamed and specialised services. However, the picture Gothard paints is realistic. Early in the book, she writes that:
At least in Western countries, progress towards the goal of ‘normal lives’ for people with disabilities seemed unstoppable and irreversible. As a special education teacher, ten years ago I worked with families of young children with disabilities who were exploring educational options in my native country, Greece. But the future we took for granted in those discussions appears very precarious at the moment, after three years of severe financial crisis. While Greece is perhaps the country with the most uncertain future, since the financial crisis in 2008, a number of countries have implemented drastic cuts to their public services. In England and Wales the disability sector has been affected by extensive funding cuts. The Learning Disability Coalition published their annual survey for 2012 in April. Seventy-seven percent of the local authorities surveyed experience difficulties in funding services for people with learning disabilities and have implemented cuts to services or efficiency savings. Access to opportunities and choices can be easily eroded impacting on the quality of life of people with a disability and their families and carers, for example when services are not directly affected and they are still available but transport isn’t provided anymore. Further, as one provider has stated ‘we support many people who do not get the hours they need and many older carers struggling with only five hours per week respite through support’ (Learning Disability Coalition 2012, p. 13).
For parents of children with Down syndrome to be able to secure the long-term future of their adult children is their main concern as they get older. The penultimate chapter of the book is entitled ‘We’ve got to outlive him!’ and discusses what factors impact on families’ decisions on whether their child with Down syndrome will move out of the family home. Western Australia and Australia in general are not currently experiencing the level of financial difficulty faced in most other Western countries. However, the unique characteristics of Western Australia results in distinct experiences between metropolitan areas and regional and remote ones, which in turn may disproportionally affect Aboriginal communities. This is a recurrent theme in the book and while progress through time is evident, there is a gap in the availability of services. Carol Lambert, who lived in the Kimberley, told Gothard she was receiving toys for her daughter Malia from the Noah’s Ark Toy Library based in Perth. Gothard’s note that this was a distance of more than 3,000 kilometres motivated me to try to put that in perspective with my own European background. Three thousand kilometres is approximately the distance between Aberdeen in Scotland and Heraklion in Crete, Greece. Combining this with a total population in Western Australia of 2,366,900 in 2011, the logistical challenges of providing specialised services to every corner of the state becomes apparent. This book has a particular interest as a local history but its relevance is much broader. As Fiona Stanley says in the foreword, it can provide valuable insights and understanding for parents of children with Down syndrome, for parents faced with indication of Down syndrome in prenatal testing, and to those working with people with a disability. The book is important in posing questions about where we are, what it took to get here, and what it is in the future. The struggles and gains of the last 50 years in the provision of services for people with Down syndrome and their carers are to be celebrated and protected. REFERENCESAustralian Bureau of Statistics 2009, Trends in National Fertility Rates, Australian Bureau of Statistics, Canberra [Online], Available: http://www.abs.gov.au/ausstats/abs@.nsf/Products/CB88996A50DAF915CA25766A00120D19 [2012, May 29]. EURO-PERISTAT Project (with SCPE, EUROCAT, EURONEOSTAT) 2008, European Perinatal Health Report [Online], Available: http://www.sante.public.lu/publications/sante-fil-vie/petite-enfance/european-perinatal-health-report/european-perinatal-health-report.pdf [2012, May 29]. Learning Disability Coalition 2012, Social Care in Crisis – The Need for Reform [Online], Available: http://www.learningdisabilitycoalition.org.uk/download/SocialCareinCrisis2012%20-%20final.pdf [2012, May 29]. Palin, B. 2012, Stand with the 8% Down syndrome babies who weren’t aborted, Web log entry, 15 May [Online], Available: http://www.patheos.com/blogs/bristolpalin/2012/05/stand-with-the-8-down-syndrome-babies-who-werent-aborted [2012, May 29]. Shakespeare, T. 2006, Disability Rights and Wrongs, Routledge, London. Tomlinson, S. 1982, A Sociology of Special Education, Routledge & Kegan Paul, London. Ilektra Spandagou is a senior lecturer in inclusive education at the Faculty of Education and Social Work, The University of Sydney. Her research interests include inclusion, disability, classroom diversity, and social policy. |
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