Down’s Syndrome – an Introduction

Down’s Syndrome is a genetic condition caused by the presence of an extra chromosome in the body’s cells.  Normally the nucleus of a cell contains 23 pairs of chromosomes, 23 inherited from the mother and 23 from the father.  In children with Down’s Syndrome, there is an extra copy of chromosome 21, meaning that there are in fact 47 (rather than 46) chromosomes in total.  It is the presence of the additional chromosome which disrupts normal cognitive and physical development.  The condition takes it name from the 19th century London physician John Langdon Down who first attempted to categorise and describe the condition. [see original paper]

Although there is a greater likelihood of advanced maternal age leading to a child being born with Down’s Syndrome, there is no scientific evidence to suggest what might cause the condition.  The rate of Down’s Syndrome births has remained constant in recent years at 1 per 1000 births.  The National Down Syndrome Cytogenetic Register has gathered data on the number of Down’s diagnoses and births since 1989 and reveals that overall diagnosis of the condition has risen by 71% over the past 20 years, from 1,075 in 1989 to 1,843 in 2008.   The data suggest that this rise in diagnosis is due to more women now delaying having a family till later in life than twenty years ago (research estimates that the risk for a 40-year-old mother is 16 times greater than that for a 25-year-old mother).  However the actual number of births of children with Down’s Syndrome has decreased (by 1%) over the same period due to the very high rate of terminations (92%).  Down’s Syndrome charities would argue that greater education of expectant mothers about the condition would lead to fewer such terminations.

In October 2011 the comedian Ricky Gervais angered many by making jokes about “mongs” (“Good monging” and “Two mongs don’t make a right” etc).  Mencap, the learning disability charity, called his comments “very disappointing” and following widespread public criticism, Gervais admitted that he was “naive” not to realise that the word was still used as an insult.  This admission came only after speaking to the mother of two children with disabilities, who sobbed as she discussed the issue on Jeremy Vine’s Radio 2 show. [see article]

Children with Down’s Syndrome will all have learning difficulties but these will vary from mild to severe.  This contrasts with the widely held public perception that all children with Down’s Syndrome are alike.  In fact, children with Down’s Syndrome vary enormously, not just in their level of learning ability, but also in their personalities, likes and dislikes.  However there are several common physical characteristics of people with Down’s Syndrome such as a rounded face and flat profile, eyes which slant upwards at the outside, a small mouth, broad hands with stocky fingers, low muscle tone, a wider gap between their first and second toe and soft, straight hair.  In addition 50 % of children with Down’s Syndrome are born with visual/hearing impairment and 40% are born with heart defects.

Prior to 1971 in the UK all children with Down’s Syndrome were deemed “ineducable” and were often either kept at home or in long-stay hospitals with little educational stimulation.  Following the 1971 Education Act in the UK the education of all children (including for the first time children with Down’s Syndrome) became the responsibility of Local Education Authorities or Education and Library Boards.  Several years later the Warnock Report (1978) marked the beginning of the modern era of inclusion in education.  More recent legislation such as SENDO (2005) in Northern Ireland has strengthened the right of children and young people with any special educational needs (including children with Down’s Syndrome) to be educated in mainstream schools. Many children with Down’s Syndrome are now placed successfully in mainstream schools (with the support of a classroom assistant in most cases), with others being placed in special schools.  In Northern Ireland 69% of children with Down’s Syndrome are educated in special schools, but 25% are in mainstream primary schools and the remaining 6% are in mainstream post-primary schools.

See Down’s Syndrome Association website [click here]

Question for Cross-Border Discussion Forum:

In your experience, is the labelling of children/people with Down’s Syndrome (as in the recent “mong” jokes made by Ricky Gervais) simply a case of innocent “naivety” or evidence of an endemic and persistent prejudice against those who have this genetic condition?