What is in a name?

Chris Hatton’s fascinating post here about change (or not) in the number of in-patient beds for people with learning disabilities, concluded that there were almost as many beds as pre Winterbourne View, but some providers had changed the names of their institutions to care homes, with or without nursing, for example. It started me thinking about the role played by language in  talking about the difficult topic that is learning disability.

I have spent more time than I care to remember in discussions about the right language to use. If we had spent as much time discussing things that really matter, like how to change people’s attitudes, or how to secure a better life for people with learning difficulties, maybe we’d have made better use of our time. This is a group of people whose labels have changed with alarming rapidity. The table illustrates the plethora of terms used over the past century or so. Many are now terms of abuse, but in their day they were the pukka words to use.

 

Label Dates in use (in England unless otherwise stated) Origin
Mongol
1862 – 1950s Dr John Langdon Down identified Downs Syndrome, and classified people with DS as a ‘Mongolian’ type of ‘idiot’
Defective 1880-1959 Cross Commission 1886

1913 Mental Deficiency Act (repealed in 1959)

Idiot 1880 – 1959 Idiots Act (1886)

Mental Deficiency Act 1913

Imbecile 1913-1959 MD Act 1913 – 1959
Feeble-minded 1913-1959 MD Act 1913-1959
Moral Defective
1913 – 1930s MD Act 1913, dropped out of use in 1930s
Dull First recorded c. 1886
Moron Early C20 A medical term denoting an adult with a mental age of about 8–12): from Greek mōron, neuter of mōros ‘foolish’.
Cretin Eighteenth century Refers to medical condition (due to thyroid deficiency) common in some parts of Switzerland
Backward 1880s – 1950s National Association for Parents of Backward Children, later Mencap 1940s to c.1970
Ineducable 1944 – 1971 1944 Education Act excluded children with IQ below 50 from school
Spastic In use since eighteenth century, became term of abuse in 1970s Person with Cerebral Palsy, medical condition, which affects control of limbs
Sub normal / severely Sub normal
1959 – 1971 Mental Health Act 1959
Mentally handicapped 1960s – 1980s Better Services for the Mentally Handicapped 1971
People with Mental Handicap 1980s Gradually replaced ‘mentally handicapped’ in 1980s
Special Needs 1978 – today Warnock Report 1978
People with learning disabilities 1990 – today Adopted by Government c. 1990, used in ‘Valuing People’ (2001), ‘Valuing People Now’ (2009)
People with learning difficulties 1980s – today Self advocates’ preferred term
Retarded / Retards 1940s to c.2000 Official term used in USA until replaced by ‘intellectual disability’ in early C21
People with intellectual disabilities 2000 onwards Australia, NZ, US, Canada, some UK

 

In thinking about language, I turn to Valerie Sinason. In a book published in 1992, ‘Mental Handicap (sic) and the Human Condition’, Valerie argued that the frequent changes in language is akin to laundering. This laundering serves to mask our discomfort with intellectual impairment, and to distance ourselves from that discomfort. Changing the words enables us to set ourselves apart from our predecessors, to tell ourselves that we know better. She wrote:

Each worker introducing a new term hopes that the new word brings new hope and a new period of historical change. Each time the new word is coined, it is coined honourably … Each such chapter praises itself for a hopeful new term. It is therefore doing a grave disservice to past pioneers to point contemptuously to their chosen term.

(Sinason 1992 p.40)

This insight helped me to develop the argument that I first published in ‘Towards a Good Life’ (Johnson and Walmsley 2010) that each generation repudiates, not only the language but the legislation, the policy and the practices of its predecessor. Thus, almost as fast as we have changed the language, we have lurched from institutions to ‘community care’ – hostels and day centres – to small group homes, to independent living, supported living, and now individual budgets. The previous policy is rejected as completely wrong and indefensible, to be jettisoned in favour of the new panacea. This startling turnover of policy ideas prevents real learning from the past, and falsely promises wholesale change for the better, just by repainting the words on the door.  In practice, I would argue, many fundamentals have not changed. Sally Philips’ BBC documentary on Downs Syndrome provided a neat, albeit chilling illustration. Medical staff continue to treat the birth of a child with learning difficulties as a disaster, just as they did in the days families were told to ‘put him away and forget about him’. Mothers are permitted, nay encouraged to abort a foetus if tests show s/he has Downs Syndrome, and abortion is legal until very late in the pregnancy in such circumstances. The easy assumption that all this is OK shows the low value which continues to be placed on people with learning difficulties,  despite changing language and changing policy. I could go on to argue the persistence of eugenic ideas when it comes to childbearing and rearing if you are a woman with a learning difficulty, but I will leave that to another cheerful post.

 

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