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MOMENTS IN HISTORY
assiona e a voca e

aul illia s describes the life and career of Rex Brinkworth,
founder of the Down’s Syndrome Associaton. His historic role as a
courageous and pioneering advocate of learning disability rights is at risk

of being forgoten.

to research expression of the Mongolian an MBE for his work. He died
ways of type in some babies, even in 1998.
supportng though they were born to
children with Caucasian parents.
Down’s The characteristcs described Rex was vehemently
e inkwo was o n in syndrome through early were later named ‘Down’s opposed to pre-natal
R . ivin in e stmulaton and diet. syndrome’ afer Langdon Down, screening and aborton.
louces e s i e villa e w e e but a common term in use well He described people with
e s en is c il oo we e By great coincidence, into the twenteth Down’s syndrome as
wo a ul s wi own s Rex and Jackie’s fourth child, century was ‘mongolism’, a ‘having something extra’
s n o e an e eca e Françoise, was born in 1965 word that would of course because of their additonal
ien s wi e . e aine with Down’s syndrome. be totally, and rightly, chromosome, rather than
as a eac e an evelo e a This gave a strong impetus to rejected today. being so defcient that their
s ecial in e es in c il en Rex’s work. He enrolled for a existence needs to be
wi lea nin i cultes Diploma in Child Psychology prevented. A television
eco in ea o e and as part of that he programme about his work
...his work aimed
carried out research on
e e ial e a en o a babies with Down’s syndrome, in 1976 was ttled
secon a sc ool in methods of stmulatng ‘to ofer a measure ‘The Child with Something
i in a . e of justce to a Extra’. He gave freely of
ucaton c allowe which he also tried out – with his tme and advice to
c il en wi lea nin substantal success – with much misused and families, distributng his
i cultes inclu in os Françoise. Word spread about misunderstood group sheets of instructon to
c il en wi own s his work and he began to be of human beings hundreds of parents at his
s n o e o e e clu e contacted by other families who difer from own expense.
o sc ool un e e la el for advice. By 1969 he had ourselves not so
unsui a le o e ucaton in supplied 130 families with He wrote that his work aimed
sc ool . ns ea ovision duplicated sheets of advice much in kind as in ‘to ofer a measure of justce
was a e in ainin en es and instructons for exercises, development’. to a much misused and
un local eal and he decided to put these misunderstood group of
a e an e ucaton together in book form. The 70- Rex used the term ‘mongol’ human beings who difer
au o ites. ese cen es page booklet was published from ourselves not so
we e onl inco o a e by Mencap and was called much in kind as in
in o ains ea e ucaton ‘Improving Mongol Babies and because it was current at the development’. His stance
w en e c was Introducing them to School’. tme, but he hated the word against screening and
e eale in . and campaigned hard for it to aborton made him unpopular
be dropped. His book ran and his work is litle
Long before that tme Rex had Down’s syndrome was frst to several later editons remembered today.
been a passionate advocate systematcally described by and was renamed Even the Down’s Syndrome
for inclusion of children with Dr John Langdon Down in ‘Improving Babies with Associaton, which he founded,
learning difcultes in schools. 1867. Theories were prevalent Down’s Syndrome’. has nothing on its website
He believed that environmental at the tme that human beings In 1970 he founded a to acknowledge him.
factors such as stmulaton and could be divided into racial voluntary organisaton in However, he was a powerful
diet could greatly help such types. As what he called ‘the Birmingham to support and and courageous advocate for
children, and he extended this great divisions of the human advise families, which he people with Down’s syndrome
belief with some ideas for family’, Langdon Down listed called ‘The Down’s Babies who deserve grattude and
work with babies with Down’s Caucasian (European), Associaton’. This developed celebraton for their lives.
syndrome very early in their Ethiopian (African), into the Down’s Syndrome
life. Rex was fuent in French Malayan (from the Southern Associaton which now has
and had married a French hemisphere), Aztec (American) its headquarters at Rex Brinkworth and
woman, Jackie. In 1959 and Mongolian (Asian). Langdon Down’s house, Joseph Collins (1973)
he read about Lejeune’s work He speculated (wrongly) that Normansfeld in Teddington, Improving Babies with
(see CL vol. 30 No 2, 2016) the characteristcs of the London. Rex was Educaton Down’s Syndrome.
and contacted him. people he described Adviser to the Associaton 5th revised editon.
They began a collaboraton represented the ‘regressive’ untl 1988 and was awarded London: Mencap.

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