Patients, ‘service users’, survivors? How do people living with mental illness see themselves? In the last of our series the Asylum and Beyond, Sarah Chaney looks for their voices in the historical record.
In the March 1894 issue of the Bethlem Royal Hospital magazine, ‘Under the Dome’, Henry Francis Harding described the annual meeting of the Mental After Care Association. The Association was set up in 1879 to support those discharged from asylums, initially focusing on female patients without family or means who were particularly likely to require financial assistance. It may seem surprising that Harding was present among the ‘large attendance’ he described at this meeting, as he was a Bethlem patient.
Harding, who contributed regularly to the Bethlem Hospital’s quarterly magazine ‘Under the Dome’, was 60 when first admitted to Bethlem in December 1886. He was a law stationer by trade but was no longer able to work. Unmarried and apparently with no family to support him, he would surely have been interested by the decision taken in 1893 to open a fund for the After Care of men. Not that he ever needed such a fund. Harding stayed at Bethlem for ten years until his death in August 1896.
Bethlem’s admission rules usually required an uncured patient to be discharged after 12 months, so Harding clearly occupied an unusual place in the institution. As he himself put it, “we who write these notes are of the genus patient (species: “Voluntary”) – and very patient, if a somewhat lengthy abiding in Bethlem be taken – and should it not? – as evidence thereof”. [‘Under the Dome’, Vol. 2, No. 8, December 31 1893]Eighty years after Harding ‘classified’ himself as a patient, the Mental Patients’ Union was founded, in 1972. A radical movement, influenced by anti-psychiatry and Marxist theory, the group advocated for the dignity of mental patients. Many called themselves survivors, raising awareness of their survival of the mental health system and of poverty and discrimination: mental illness needed to be understood in its social and political context.
Yet the voice of survivors is often missing from the historical record. Other than Andrew Roberts’ detailed web resource and journals like ‘Asylum’, which began in 1986 and is still going as a magazine for democratic psychiatry there are few resources about survivors.
The only records of Survivors Speak Out in the Wellcome Library, for instance, are those found within the archives of Mind, the mental health charity set up in 1946 (as the National Association for Mental Health). Like the After Care Association, NAMH was set up by medical and associated professionals, although around its change of name to Mind in 1972 the organisation became a lobbying group that now claimed to speak for patients – or, as they later became called, ‘service users’. But, as founder member of Survivors Speak Out Peter Campbell has noted, survivors struggled for this recognition: “Even in the early 90s, nobody in the statutory services gave a damn about advance directives or advocacy. … A lot of it was about working against the mental health system and fighting to get organisations like Mind and Rethink behind us.”
When are patients users and when do they simply receive services? The term ‘service user’ – and its North American counterpart, ‘mental health consumer’ – presents an illusion of choice that may not be the experience of those it claims to describe. As Andrew Roberts recalled Eric Irwin putting it, “I am a consumer of the mental health services as a woodworm is a consumer of Rentokil services”!
Terms that may be used unthinkingly by mental health professionals or researchers have complex social meanings for those whose lives are impacted by them. When Anna Sexton set out to actively collect narratives of lived experience by creating a Mental Health Recovery Archive as part of her PhD research, she didn’t at first realise how loaded the very term ‘recovery’ had become:
“… the response from some of those with lived experience, some of whom were tied into NHS service provision, was that they felt distanced from the archive because of its label. Recovery in their experience had become a twisted and manipulative word used by professionals who are tied into a medical worldview. Recovery was not part of their self-definition, it wasn’t part of their own vocabulary, it wasn’t a label they would choose to apply to themselves.” Anna Sexton, Mental Health Recovery Archive, 2012-2013Survivor archives and records tend to be scattered among the grassroots groups that created them. There is not necessarily an obvious location to house them: unlike psychiatric records that sit with institutions (like Bethlem), with professional bodies and in medical repositories, survivor stories are not necessarily framed by medicine, even if the associated movements have emerged from a medical context.
This makes these stories a fragile resource, only available in a few isolated publications and the memories of members of these communities. As in the case of Henry Harding, patients’ voices can be found buried in the records of medical institutions, but they are rarely allowed to stand alone.
Sexton found that the overwhelming voice in the Wellcome Library’s mental health archives was that of individuals as professional experts. If future historians relied on these contemporary collections, it would be easy for them to conclude that changes in the mental health system in the late 20th century were the result of the work of a few pioneering professionals, or were led by humanitarian organisations or, God forbid, celebrity spokespeople. Mad Studies may help to change this. But, alongside this, we need archives and libraries to actively collect these stories before they are lost to future generations.
There is, after all, hope for the future of survivor narratives. Historians Andrew Roberts and Peter Campbell are writing a book about the history of the movement in Britain, while Diana Rose, the first and only Professor in User-Led Research in the world, is leading a research project to explore the historical developments of different service user movements across the world and their impact on policy and practice. Let’s hope this is just the beginning.