Down's Syndrome Association

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REIGN OF QUEEN ELIZABETH II TRANSFORMS LIFE FOR PEOPLE WITH DOWN’S SYNDROME

02/06/2002

understanding of the condition amongst the general public means that we are closer to a point where all people with Down’s syndrome will get the support they need to fulfil their individual potential.  However, we are still battling with pockets of prejudice and ignorance based on myths and out-dated attitudes.’

For further information, including key facts about Down’s syndrome and guidance on appropriate language and terminology visit the ‘Media Information’ section of the Down’s Syndrome Association web-site:  www.downs-syndrome.org.uk

Or contact:  Sarah Waights, Down’s Syndrome Association

T: or M:

EDITOR’S NOTE: 

*  Down’s Syndrome Association (DSA) is a national charity which exists to provide information and support for people with Down’s syndrome, their families, carers and those with a professional interest.  It also seeks to improve knowledge and understanding and to champion the rights of people with Down’s syndrome in the UK.

ATTACHED: 

• Half a Century of Change for People with Down’s syndrome - an overview of key events affecting the lives of people with Down’s syndrome.

• A statement from Lord Rix - a lifelong campaigner for people with learning disabilities and a father and grandfather to people with Down’s syndrome.

HALF A CENTURY OF CHANGE FOR PEOPLE

WITH DOWN’S SYNDROME

1.          Lifestyle

• 1950s - In the 50s it was the norm for people with Down’s syndrome to spend their entire lives in an institution or long-stay hospital.  Parents were made to feel ashamed of their children and were told “Put him away and forget him”.
• 1970s - By 1975 it was estimated that around one in four adults with ‘mental handicaps’ were still in mental hospitals even though two out of three were only there because they had nowhere else to go.
• 1990s - The 1990 NHS & Community Care Act (implemented in 1993) made local authorities responsible for providing a package of care for people with learning disabilities allowing them to live within the community as an alternative to institutional care.
• Today - The Learning Disability White Paper ‘Valuing People’, published in 2001, champions the key principles - legal and civil rights, independence, choice, inclusion - to be reflected in every aspect of the lives of children and adults with learning disabilities.

2.          Life Expectancy & Health

• 1950s - Average life expectancy of individuals with Down’s syndrome was just 12-15 years in 1947.
• 1960s - Average life expectancy rose to 18.3 years in 1961. 
• 1990s - In the late 1980s and early 1990s, significant developments were made in the surgical repair of certain heart defects (which are more common in people with Down’s syndrome), improving life expectancy for those affected who were able to get access to treatment. 
• Today - Life expectancy for people with Down’s syndrome was 57 years in 1997 with babies born today likely to enjoy a healthy life of sixty years and longer.  Much of the improvement can be attributed to better access to health care.  However, the 1999 launch of the Down’s Syndrome Association’s Health Alert campaign and the 2002 launch of its web-site training resource for health professionals, are both in response to continuing discrimination and lack of knowledge amongst some health professionals.

3.          Education

• 1950s - People with Down’s syndrome were termed “severely subnormal” and “ineducable”.  As such, they were not legally entitled to an education. 

• 1970s - The 1971 Education Act called for children with Down’s syndrome to be categorised as either “educationally subnormal – medium” or “educationally subnormal - severe” and to be sent to a corresponding special school. 
• 1980s - After 1981, new legislation meant that parents were given - for the first time - the choice of sending their child to a mainstream school. 
• Today - A raft of legislation including the 1993 Education Act, the Disability Discrimination Act 1999 and the Department for Education and Skills’ Guidance on Inclusive Schooling is further improving the framework of support.  The majority of today’s babies with Down’s syndrome will go to mainstream primary schools with an increasing number continuing to mainstream secondary education. 

4.          Science & Research

• 1950s - In 1959, Dr Lejeune discovered that the cause of Down’s syndrome was an extra chromosome, meaning a total of 47 chromosomes as opposed to the usual 46.
• Today - A study published in 2001 indicated that people with Down’s syndrome have a significantly reduced chance of suffering from a number of common types of cancer.  Further research into the apparently protective effect of the additional chromosome is now planned with potential implications for the wider population.

5.          Terminology & Language

• 1950s - People with Down’s syndrome were generally described as “mentally defective” or “retarded”, terms which seem shocking today.
• 1960s - In 1964, the term “mongol” (having first been used by Dr John Langdon Down in a published paper in 1866) was dropped by the Lancet as a medical description.  The World Health Organisation banned it the following year. 
• 1980s - In 1986, the Down’s Syndrome Association ran a successful poster campaign to eradicate the use of the term “mongol” amongst the general public. 
• Today - The term “mental handicap” has been widely replaced by “learning difficulty” or “learning disability” which avoids the possibility of confusion with mental illness.  However, a Health Alert survey carried out by the Down’s Syndrome Association in 1999 reported that the term “mongol” was still used by some health professionals.

A STATEMENT FROM LORD RIX

The following is a statement from Lord Rix, the former actor-manager Brian Rix, whose daughter Shelley (51) was born just six months before the Coronation.  He also, co-incidentally, has a one year old grandson with Down’s syndrome.  Lord Rix is a life-long campaigner for people with learning disabilities and President of MENCAP. 

“Soon after Shelley was born, the paediatrician told my wife bluntly ‘Your daughter is a Mongol.’  The discovery that she had Down’s syndrome caused immense sadness in our family.  We were advised to put her away and forget all about her as everyone was encouraged to do in those days.  I remember being sent a letter from the Ministry of Health when I asked what help was available.  The letter assumed she would not be capable of education, stating that she would therefore be dealt with under the Mental Deficiency Act.  I was given a list of private homes for ‘mental defectives’, the descriptions of which included references to the care of ‘feeble-minded imbeciles’ and ‘helpless idiots’.  That sort of language is - I hope - unthinkable nowadays, but it is a clear signal of the attitudes that prevailed at that time. 

Of course so much has improved since then, largely due to the hard work and perseverance of parents and families under the auspices of organisations like the Down’s Syndrome Association and MENCAP.

I have high hopes for the future of my grandson Robbie who - quite by chance - was also born with Down’s syndrome a year ago.  Unlike his aunt, he is entitled to the healthcare he needs, to go to school, get a job and live a decent adult life within the community.  All we need to do now is make sure it actually happens.

For further information, contact:

Sarah Waights, Down’s Syndrome Association

Tel: or or mobile