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November 21, 2014

Pioneer who improved care of the disabled

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Prof Conor Ward on the life and achievements of John Langdon Down — who identified the condition that carries his name and radically improved standards of care


When John Langdon Down died in 1894, his Lancet obituary recorded that he was a descendant of a Church of Ireland Bishop — Bishop Down of Derry.
Ireland can however lay no claim to the connection, and the Bishop concerned has been identified as an unrelated Bishop Downes (1727-1735). The Down family were in fact of Nonconformist stock and they had a strong connection with the Congregationalist church in the village of Torpoint, where John Langdon Down was born.
John Langdon Down visited Ireland only once. He attended the Social Science Congress in Belfast in 1867, and it was here that he delivered his important address on the Education and Training of the Feeble in Mind. He said that that it was ‘time for those who are interested in social progress to discuss the best plan for elevating and improving those individuals, who without fault of their own were powerless to rescue themselves from a condition than which humanity knows nothing more pitiable and which as yet society had made only partial efforts to relieve’.
He went on to outline the necessary steps which should be taken for the education and training of young people with learning disability, emphasising social integration at every level of society.
Early Victorian era
In the early Victorian era little was done in Ireland to improve the lot of those affected. The first to refer to the problem was Jonathan Pim. Writing in 1864 he noted that there were just over 7,000 ‘idiotic’ individuals listed in the census of 1861, of whom 5,700 were at home with their families, and the others were either in lunatic asylums or in workhouses.
He went on to describe all the institutions catering for learning disability in England and Scotland and further afield in Switzerland and in the United States, mentioning in particular the Earlswood Asylum in England, and describing in detail its schoolrooms and craft workshops.
In the following year Cheyne Brady published an extended pamphlet on the training of ‘idiotic and feebleminded children’. He described how, until then, affected boys and girls — and sometimes stunted men and women — ran wild in the streets and villages of Ireland.
He said they were viewed as repulsive objects. They were often half-naked, they walked or crawled in an ungainly manner, with saliva running from their mouths. By his account they might be found bundled in rags, living in dirt and degradation, worse than dogs or pigs.
Rev Andrew Reed
He wrote enthusiastically about his worldwide visits to major institutions and he described in detail the special role of the Rev Andrew Reed, founder of Essex Hall, and Earlswood, both very successful English institutions. Rev Reid, in the course of preaching missions, had himself seen handicapped individuals similarly ill-treated. His active work for learning disability began in earnest when a Mrs Plumbe, a member of his congregation, had appealed to him for help in finding a way to look after her disabled son.
Cheyne Brady visited Earlswood in the spring of 1865. He was accompanied by Jonathan Pim and also by Surgeon Wharton, Medical Inspector of Lunatics under the Court of Chancery. Institutions for learning disability were still administered under the Lunacy Acts at that time and his goodwill could come to be important if an Irish institution were to be founded.
Langdon Down
His description of Earlswood ran to 16 pages and it included an account of his meeting with Langdon Down — whom he had observed to be regarded with great affection by all the Earlswood residents. He commented on the expression of happiness on the faces of the children when they met him. They lived very full lives, being educated to the limits of their abilities and being taught practical skills which might make it possible for them to gain employment on discharge. Music featured prominently in their activities.
Dr Down wrote the dialogues for pantomime concerts enacted by the residents, who wore costumes designed by Dr Down’s wife Mary. The Dublin visitors spent two days in Earlswood and visited every part of the institution, escorted by John Langdon Down himself. They were fascinated by the ambitious models built by James Henry Pullen, the famous idiot savant.
They were also very impressed by the training that was given in the use of money, residents alternating in the roles of shopper and shopkeeper.
The Dublin philanthropic concerns came to fruition in 1869 when Dr Henry Hutchinson Stewart financed the purchase of Palmerstown House to provide for the education, training and maintenance of children with mental handicap. The Stewart Hospital can rightly be regarded as Dublin’s legacy from John Langdon Down.
When Dr Langdon Down moved on to open Normansfield, the private institution which he founded in 1868, he had already described the condition which carries his name, and he had also described other important conditions such as the syndrome of gross obesity later attributed to Prader and Willi.
Normansfield developed an international reputation and many well-to-do families from Ireland availed of the high- class facilities there. One such young man of good family was admitted as a Right Honourable, and on the death of his older brother became an Irish Earl. He survived to enjoy the title for only a short number of years, and the title passed once again to a younger brother.
Families from Ireland whose children had not as yet acquired reading skills were dependent on Mary Langdon Down to pass on their Christmas and birthday greetings. Mary, always known in Normansfield as Little Mother, fulfilled the surrogate role. One Irish mother used to send a brace of pheasant from the family estate to remind her son of his home background.
An extraordinary clinician
The regular meetings of Down’s Syndrome support groups provide a timely reminder of the life of an extraordinary clinician. At the age of 14, Langdon Down was taken out of school to serve in a striped apron behind the counter of his father’s village store in Torpoint in Cornwall. The Pharmacy Act of 1802 had made it possible for his father to become registered as an apothecary — on the basis of having been for many years in the business of selling over-the-counter medicines.
John Langdon Down subsequently qualified as an apothecary on the basis of having served a certified apprenticeship to his father. He was admitted to the London Hospital Medical School, where he distinguished himself, taking the gold medals in medicine, in surgery and in obstetrics and being awarded a further gold medal for being the best student in his year. Contracting an illness, which was almost certainly tuberculosis, he convalesced in Cornwall.
It was there that he had an experience which changed his life. Taking shelter in a cottage from an unexpected summer downpour, the Langdon Downs were served tea by a young woman who was intellectually compromised and by his account he decided there and then that if he could, he would devote his life to care of ‘such as she’.
The eminent William Little
The opportunity arose in 1857 when the post of Medical Superintendent had to be filled urgently in the Earlswood Asylum. Standards of care has fallen. Reform was urgent. Langdon Down’s application for the post was supported by the eminent William Little (of Little’s Disease), by the Royal Physician Sir John Forbes and by other eminent medical men. He was duly appointed, although he had no experience of learning disability.
He worked closely with John Connolly, the English reformer of psychiatric care. He introduced major reforms and he established such a high reputation that even the great Seguin expressed a wish to travel from the United States to work with him for a time.
When, in 1866, Langdon Down identified the physical and psychological features of a disorder which had not been previously recognised he called it Mongolian idiocy, mainly because of the characteristic appearance of the face and the upward slanting eyes.
In reviewing the Earlswood patients he was the first clinician to use clinical photography on a large scale. The descriptive term Down‘s Syndrome came to be substituted by decision of the editor of the Lancet in 1961, and this was confirmed by the World Health Organization in 1965.
There are now Down’s Syndrome Associations across the world and a Down’s Syndrome World Congress is held every four years.
The Down’s Syndrome Association of Ireland is currently coordinating the 2009 Congress (August 20-22) and the associated meeting of the Down’s Syndrome Medical Interest Group.