The politics of Down syndrome


School inclusion for children with Down syndrome stands at a crossroads

An adult with Down syndrome (DS) in the UK today, who is over the age of 35, is likely to have been given little or no access to any level of formal education. For those without SEN, you would have to go back to before 1870 (the introduction of the Elementary Education Act) for the equivalent to be the case. The last three or four decades have seen some significant leaps forward in terms of access to education, but while society is now more conversant with the ideals of equality, achieving these goals is still a little way from our grasp.

A brief overview of the recent history of inclusion starts with the 1944 Education Act, which introduced a tiered system of education based on whether children were “educable” or not. Children with DS were considered uneducable at this point, and consequently received no education at all. They were often consigned to institutions or they remained at home, possibly with some access to junior training centres, where it was considered an almost charitable exercise to give some support to the “educationally sub-normal”.

Things changed further in 1971 with the White Paper “Better Services for the Mentally Handicapped” which introduced segregated schooling based upon IQ measures. Children with IQs below 50 were labelled as educationally subnormal (severe) ESN (S) and sent to schools established from the junior training centres. Most children with DS were considered to have this IQ level as a result of their diagnosis and very few attended the schools for the educationally subnormal (moderate), for children who were considered to have an IQ of 50 to 70.

It was only in the late 1970s, which saw the publication of the hugely influential Warnock Report, that things began to change more significantly. In 1978, the then Department of Education and Science stated that “Section 10 of the Education Act 1976, when implemented, will shift the emphasis of special educational provision within the framework in England and Wales significantly in the direction of greater integration and improved provision in ordinary schools.”

The years following this declaration saw some promising signs of inclusion. However, despite a policy in favour of integration, resources were patchy, and inclusion often depended upon individual schools and what parents were prepared to fight for. However, the right had been asserted and, for at least a few children with Down syndrome, mainstream schooling became a reality. To this day, though teacher training on SEN can be decidedly basic.

The Lamb Inquiry (2009) highlighted some of the key failures (and positive achievements) of the existing system. As the Inquiry’s report noted, “The education system is living with a legacy of a time when children with SEN were seen as uneducable. Too often they are still set the least demanding challenges.” Sadly, under New Labour, there was little apparent appetite to fully address the issues raised.

On the whole, children with DS have a strong visual learning bias, and they retain information far better this way than through verbal activities; therefore, some tailoring of materials, visual timetables and an early focus on reading can provide access to a world that they are otherwise excluded from. It is difficult to process concepts and develop communication without language, so the written word can help massively in helping children develop. This learning bias is by no means exclusive to children with DS, so in a classroom setting others may well benefit from using similar visual tools.

Unfortunately, families of children with DS can get frustrated by the lack of access to specialist therapy, and there is often a shift from mainstream to special schools, in which many parents feel that their child can be given more comprehensive support. However, while these schools may have a dedicated speech therapist, they may not have any specific expertise in DS. What’s more, the environment is often different to that in mainstream schools; expectations may be lower, and peers may be less likely to be able to help a child with DS model his/her behaviour or prepare for the adult world.

In 2005, David Cameron, as Shadow Education Secretary, worked on the Conservative’s own report into SEN, which now forms the basis of their current Green Paper and consultation on SEN. There is a strong theme in the Green Paper of the parental “choice” to send children to a special school, and there is also a shift of power back to mainstream schools, allowing them to turn children away who have needs which the schools feel they cannot meet – a choice they currently do not have. Parent’s decisions are currently legally enforceable, although, despite this, many additional pressures are, in reality, brought to bear on the situation.

During the last election campaign, Mr Cameron was confronted by Jonathan Bartley, the parent of a child with SEN, over his stance on inclusion. “You are saying you want to reverse the bias towards the inclusion of children in mainstream schools, but at the moment there is a bias against inclusion, not a bias for it, as your manifesto says”, Mr Bartley argued (BBC News 2010). Mr Cameron responded with the argument that he is in favour of parental choice.

It would seem to be a lost opportunity not to continue pushing for inclusion for children with Down syndrome (and other learning difficulties) as without addressing the challenges of inclusion at the earliest stages of people’s lives, it subsequently becomes harder to address the systemic outcomes. For example, having a learning difficulty means that you’re unlikely to enter the world of work; in the UK, only 20 per cent of people with DS of working age have any kind of job. Similarly, nine out of ten people have never invited a person with disabilities into their home for a social occasion (Scope, 2010).

Education should be adaptable to help children learn. Children with DS have a specific learning profile which, once understood and adapted for, is often beneficial to other children with the same bias. The focus on central targets and the lack of schools’ ability to draw on effective professional support has created an environment which pushes back against the promised inclusion that started to emerge in the 1970s.

Inclusion should be a human right for children with DS and, while schools should not be used as a tool for social engineering, they should not contribute in absentia to the broader exclusion within society. Surely, no reasonable person would now argue that segregation should have continued in US schools between black and white.

It is my view that any attempts to re-establish the segregation of those with SEN should be opposed and affirmative action should be taken to include children with Down syndrome throughout their school careers.

Further information

Kieron Smith is father to Tanzie, who has Down syndrome. He is the author of The Politics of Down Syndrome and a non-executive Director of Down Syndrome Education International:

Photos courtesy of Down Syndrome Education International.

Kieron Smith
Author: Kieron Smith

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