Moments in History a Passionate Advocate


A passionate advocate Paul Williams describes the life and career of Rex Brinkworth, founder of the Down’s Syndrome Association. His historic role as a courageous and pioneering advocate of learning disability rights is at risk of being forgotten.

Rex Brinkworth was born in 1929. Living in the Gloucestershire village where he spent his childhood were two adults with Down’s syndrome and Rex became friends with them. He trained as a teacher and developed a special interest in children with learning difficulties, becoming head of the remedial department of a secondary school in Birmingham. The 1944 Education Act allowed children with learning difficulties, including most children with Down’s syndrome, to be excluded from school under the label ‘unsuitable for education in school’. Instead, provision was made in ‘Training Centres’ run by local health, rather than education, authorities. These centres were only incorporated into mainstream education when the 1944 Act was repealed in 1971.

Long before that time Rex had been a passionate advocate for inclusion of children with learning difficulties in schools. He believed that environmental factors such as stimulation and diet could greatly help such children, and he extended this belief with some ideas for work with babies with Down’s syndrome very early in their life. Rex was fluent in French and had married a French woman, Jackie. In 1959 he read about Lejeune’s work (see CL vol. 30 No 2, 2016) and contacted him. They began a collaboration to research ways of supporting children with Down’s syndrome through early stimulation and diet.

By great coincidence, Rex and Jackie’s fourth child, Françoise, was born in 1965 with Down’s syndrome. This gave a strong impetus to Rex’s work. He enrolled for a Diploma in Child Psychology and as part of that he carried out research on methods of stimulating babies with Down’s syndrome, which he also tried out — with substantial success — with Françoise. Word spread about his work and he began to be contacted by other families for advice. By 1969 he had supplied 130 families with duplicated sheets of advice and instructions for exercises, and he decided to put these together in book form. The 70-page booklet was published by Mencap and was called ‘Improving Mongol Babies and Introducing them to School’.

‘Mongolism’

Down’s syndrome was first systematically described by Dr John Langdon Down in 1867. Theories were prevalent at the time that human beings could be divided into racial types. As what he called ‘the great divisions of the human family’, Langdon Down listed Caucasian (European), Ethiopian (African), Malayan (from the Southern hemisphere), Aztec (American) and Mongolian (Asian). He speculated (wrongly) that the characteristics of the people he described represented the ‘regressive’ expression of the Mongolian type in some babies, even though they were born to Caucasian parents.  The characteristics described were later named ‘Down’s syndrome’ after Langdon Down, but a common term in use well into the twentieth century was ‘mongolism’, a word that would of course be totally, and rightly, rejected today.

Rex used the term ‘mongol’ because it was current at the time, but he hated the word and campaigned hard for it to be dropped. His book ran to several later editions and was renamed ‘Improving Babies with Down’s Syndrome’. In 1970 he founded a voluntary organisation in Birmingham to support and advise families, which he called ‘The Down’s Babies Association’. This developed into the Down’s Syndrome Association which now has its headquarters at Langdon Down’s house, Normansfield in Teddington, London. Rex was Education Adviser to the Association until 1988 and was awarded an MBE for his work. He died in 1998.

Something extra

Rex  was vehemently opposed to pre-natal screening and abortion. He described people with Down’s syndrome as ‘having something extra’ because of their additional chromosome, rather than being so deficient that their existence needs to be prevented. A television programme about his work in 1976 was titled ‘The Child with Something Extra’. He gave freely of his time and advice to families, distributing his sheets of instruction to hundreds of parents at his own expense.

He wrote that his work aimed ‘to offer a measure of justice to a much misused and misunderstood group of human beings who differ from ourselves not so much in kind as in development’. His stance against screening and abortion made him unpopular and his work is little remembered today. Even the Down’s Syndrome Association, which he founded, has nothing on its website to acknowledge him. However, he was a powerful and courageous advocate for people with Down’s syndrome who deserve gratitude and celebration for their lives.

Further reading

Rex Brinkworth and Joseph Collins (1973) Improving Babies with Down’s Syndrome. 5th revised edition. London: Mencap.