Peter Lindsay is a portfolio GP and member of the Royal College of General Practitioners special interest group on learning disability.
This book is terrifying, informative, stimulating, and educating to every member of the medical and nursing profession. It is extensively researched, has a massive bibliography, and, most importantly, it is well written and well worth reading — in spite of some truly harrowing sections.
Sarah Wise, a social historian, describes events following the passage of the 1913 Mental Deficiency Act, which was introduced by UK Parliament to address the overall declining birth rate in the UK and concern that certain members of the population were breeding excessively and thereby increasing the ‘bad stock’ to the detriment of the ‘good stock’ (p.31).
This eugenics belief was fostered and encouraged by many leading members of society and, as a result, the Act was passed referring to those who, from birth, were defined as ‘imbeciles’ and ‘idiots’, who would nowadays be considered to have a learning disability, and the more nebulous group of ‘feeble-minded’, including those of average or more intelligence who had somehow fallen by the wayside joining the other group — the ‘socially inefficient’ (p.xviii).1
“This eugenics belief was fostered and encouraged by many leading members of society …”
Unplanned pregnancy could lead to long-term detention, as could criminal behaviour or homelessness or ‘looking dirty’ or ‘wild’ (p.75, 142–144). They were all considered unlikely to be of benefit to the ‘good stock’ and could be detained against their will and the will of their impoverished families ‘for their own protection and for the protection of others’.1 (Wealthy families could use the Act to control the lives of their children).
Winston Churchill supported the Act when compulsory sterilisation was not permitted believing, like many MPs and at least one judge, that sterilisation would reduce libido and potency. Josiah Wedgwood MP, representing a parliamentary minority, opposed the Act, speaking in the parliamentary debate for no less than 30 hours in 2 days.
In the 30’s and 40’s, sociologists declared the number of those described as ‘imbeciles’ or ‘idiots’ being equally distributed among all social classes but other forms of ‘mental deficiency’ to be clearly the result of heredity. The medical profession indicated the lack of scientific evidence for ‘mental infirmity’ being hereditary and stressed the importance of poor health during pregnancy, housing, hunger, and poverty leading to extreme childhood adversity and institutional care, or the courts. In 1921, the Lancet included ‘evil home influence … is bound to produce effects upon the mental stability of the children quite apart from … the effects of hereditary predisposition’ but the politicians ruled on.
The provisions of the Act ordered that those with ‘mental deficiency’ of any sort could be detained on license in accommodation other than prison and the accommodation could be with family, built by charities, or in newly built ‘colonies’, which were walled collections of ‘villas’ each housing different ages, sexes, and abilities, with the understanding that the more able residents could, by gardening, for example, make them self-sufficient.
It was thought best they hold 1000 to 2000 people because it was easier to segregate large numbers of people. The villas also included residences for the nurses and other staff. Within these confined circumstances those deliberately confined irrespective of their abilities were given accommodation segregated for single sexes in the same way it segregated continent and incontinent patients, and any form of contact between the two sexes could be penalised by withdrawal of privileges, detention, or fixed periods in bed.
“Case history follows case history in this book, each asking question after question after question.”
National expense on the First World War caused spending restrictions and not enough colonies were built, leading to the Eugenics Society campaigning for voluntary and then involuntary sterilisation, arguing it would mean more could be cared for in the community. Wise describes other proposals of the Eugenics Society related to what was going on in Europe at the time.
There was determination that the Act should persist. When 30% of recruits to the army at the beginning of the First World War were deemed physically unfit (compared to 16% of German recruits) and medical advice was that it was due to social rather than hereditary causes, the Act still stayed in place. The amended Act of 1927 was passed to include those who had mental infirmity resulting from encephalitis lethargica and other conditions developing ‘before the age of 18 years’ as being those who could be detained against their will, this being counter to the original principles of the Act and UK Parliament agreeing that the definition of mental infirmity, and all the definitions used in the Act, were difficult to clearly define.2
Wise concentrates on wonderfully researched case histories of those without learning disability detained because of being a badly behaved child, affected by mental illness,3 pregnancy,4 or even deafness,5 whose autobiographies in the 80’s described their detention for 30–40 years from childhood and stress the importance of listening to the patients’ stories, with increasing numbers of people with learning disability now being encouraged to tell theirs.6
As a GP, I encountered a man discharged from a ‘colony’ to a community home, whose cognition improved dramatically with the provision of a hearing aid. Wise tells of a child described as ‘an imbecile’ who couldn’t settle into a ‘colony’, and because of his behaviour was transferred to the high-security Rampton Hospital that accommodated anyone over the age of 5 years. With the passing of time and the responsibility of caring for others his behaviour improved so that he could be discharged and fall in love with someone else with deafness, which was illegal under the Act. Case history follows case history in this book, each asking question after question after question.
“It was in the 70’s that I, as a medical student, visited one such ‘colony’ that is mentioned by Wise.”
Thirty-eight years after he had voted in favour of the Act, in 1950, Prime Minister Winston Churchill, prompted by campaigns from barristers and the National Council for Civil Liberties, set up a commission to look into mental health, eventually leading to the update of the Act in 1959. The commission redefined the classification of learning disability and other psychiatric conditions, and repealed most compulsory detention.
The gates to the ‘colonies’ were opened and people released into the community, but staff caring for them were concerned about the lack of provision in the community and indeed many people leaving the colonies to live with families they had not lived with for decades or new people they did not know suffered new mental health problems.
It was in the 70’s that I, as a medical student, visited one such ‘colony’ that is mentioned by Wise. Like the others, it was staffed by a wonderfully caring Psychiatrist Medical Superintendent, devoted nursing care, and occasional out-of-hours cover by GPs, and was then considered as a hospital for patients with learning disability. Recently, a colleague has told me about a 3-year-old sister who went into the school within a ‘colony’ in the 50’s and was never seen again.
In the 80’s, the ‘colonies’ were finally closed and patients discharged into the community. For those with learning disability there were no definite plans for their medical care. They would be subject to inequality of care, difficulties with communication, an idiosyncratic spectrum of medical disorders, and social policy leading to their deprivation, as it had done 90 years before.
“Quotations over the last century reveal how little has been learnt or changed by history.”
This resulted in an increased morbidity and at least six times the mortality rate, leaving us to imagine the mortality rate in the ‘colonies’. Those with learning disability and those who cared about them welcomed GP’s taking over their care and now at least 75% of people aged >14 years on the learning disability register undergo a health preserving annual check,7 though much more needs to be done. As it was 110 years ago, it is difficult to define the nature of learning disability, especially when complex computer coding is involved. In 1905, UK Parliament considered 1% of children to be ‘mentally deficient’, which means they got it less than half right!7
Quotations over the last century reveal how little has been learnt or changed by history:
In 1904 in Bradford, a councillor argued that ‘education on an empty stomach is a waste of time’ and got the council to provide free school meals to prevent bad behaviour that would lead to being detained.
In 1912, there were comments in UK Parliament that there were not enough people available to care for the ‘mentally deficient’ whether they were confined or not.
In 1913, the Daily Herald published ‘Any poor wretch convicted of stealing a doormat or a loaf of bread can at once be rushed into the institution. The maker of illicit gains on the Stock Market will escape.’
“Wise and the history she so clearly presents shows us how we need to act to protect our patients from [politicians and governments].”
Austerity in 1922, then known as the ‘Geddes Axe’, restricted any funds to any care of those with ‘mental deficiency’ and remained in effect up until the 50’s, leading to there being less than half the beds per 1000 population in the North East of England than the rest of the country, but everywhere detention in a ‘colony’ was half the cost of detention in prison.
Lord Riddell in 1929 stated, ‘The truth is we are spending far too much on these unfortunate people and thus penalising normal children upon whom the nation must depend for its future existence’. It was 45 years later, in 1978, when someone who would maintain a senior post in the cabinet, said ‘The balance of our population, our human stock, is being threatened … by those of low intelligence, most of low educational attainment’, avoiding the 1913 terms of ‘good stock’ and ‘bad stock’.
The lack of insight into peoples’ needs that politicians can attain by not considering the whole situation of each person and relying on arbitrary labels defining only one characteristic is clearly demonstrated in this book, and we need to protect everyone against that in the future.
Politicians change their minds, governments change their policies. Wise and the history she so clearly presents shows us how we need to act to protect our patients from both.
I make no comment on her last chapter or afterword other than to ask you to read them and share them with your colleagues at all stages of their careers.
Featured Book: Sarah Wise, The Undesirables: the Law that Locked Away a Generation, OneWorld Publications, 2024, PB, 352pp, £13.26, 978-0861544554
Editor’s note: Sources for quotes and data featured in this article can be found within the reviewed book.
References
- His Majesty’s Stationary Office. Mental Deficiency Act 1913. 2019. https://education-uk.org/documents/acts/1913-mental-deficiency-act.html (accessed 13 Nov 2024).
- Tredgold AF. Mental defectiveness: as defined in the Mental Deficiency Act, 1927. Ment Welf 1928; 9(2): 36–43.
- Barron D. A Price to be Born: My Childhood and Life in a Mental Institution. Harrogate: MENCAP Northern Division, 1996.
- BBC Sounds. History on the Edge: Lennox Castle Hospital. 2023. https://www.bbc.co.uk/sounds/play/m001pmbx (accessed 20 Nov 2024).
- Digital archive dedicated to the former Meanwood Park Hospital. Elsie May Simon – absconder. http://www.meanwoodpark.co.uk/people-and-events/elsie-may-simon-absconder (accessed 20 Nov 2024).
- Keagan-Bull R. Don’t Put Us Away: Memories of a Man with Learning Disabilities. St Albans: Critical Publishing, 2022.
- NHS England. Learning from lives and deaths – people with a learning disability and austistic people (LeDeR). Action from learning report 2022/23. 2023. https://leder.nhs.uk/images/resources/action-from-learning-report-22-23/20231019_LeDeR_action_from_learning_report_FINAL.pdf (accessed 14 Nov 2024).
Featured photo by Susan Q Yin on Unsplash.
