What’s in a name?
Shifting local definitions of epilepsy and its care, 1870–1913 – by Rebecca Wynter
Imagine, if you will, a time when Britain was reeling from international economic changes; when charity and welfare were struggling with rising numbers of poor and unemployed; when voices openly demanded the separation of the deserving from the undeserving; when tensions arose from defining disabled people as a financial burden and as capable; when the very boundaries of disability were being redrawn. The time in question was between around 1870 and 1913.
What happened then helped form a public language to describe those with neurological and developmental conditions, which redefined people and even prompted compulsory detention. In the city of Birmingham, for example, lived Annie. She was 16, described as “a great trouble to her mother, who [was] unable to look after her properly and [had] little control over her” and “easily led into moral trouble”. Annie was termed “feeble-minded” and recommended for indefinite forcible detention at an institution called a colony. It was this Birmingham facility that formed the subject of my pilot study for a larger research project on what were known as epileptic colonies.
Initially in Britain, the colony was largely implemented as a specialist, humanitarian and enabling site of care and therapy for people with epilepsy but without permanent mental impairment, so-called ‘sane epileptics’. With extensive grounds and small homes clustered around shared amenities and an administrative hub, the colony was to rest on medical management, fresh air and therapeutic work. Epileptic colonies were promoted by the Charity Organisation Society, an influential non-governmental body, in 1893, and by the 1904–08 Royal Commission on the Care and Control of the Feeble-Minded, which informed the 1913 Mental Deficiency Act. Each element helped to conflate epilepsy with newly conceived developmental conditions, especially feeble-mindedness (the point where what was considered ‘normal’ but ‘slow’ dipped into ‘abnormal’) and with social issues such as disability, poor education, ill-health, addiction, unemployment, poverty, crime, single motherhood and dependent families. One strand of my work is retrieving how Victorians and Edwardians with epilepsy came to be tangled up in debates so familiar to us today, and how this affected the way healthcare and welfare were delivered.
The second half of the 19th century saw medical innovation amid episodic economic depression. New specialist facilities opened. Residential institutions for people with learning disabilities developed diagnostics and tailored education towards life skills and occupation-related training. In 1860, the world’s first neurological hospital opened in London: the National Hospital for the Paralysed and Epileptic (now the National Hospital for Neurology and Neurosurgery). Here, doctors like David Ferrier and John Hughlings Jackson were making huge leaps in understanding epilepsy. Ferrier helped develop what we would now call brain imaging, as well as our modern grasp of electrical activity in the brain. Hughlings Jackson defined epileptic seizures as “occasional, sudden, excessive, rapid and local discharges of grey matter”; he also focused on focal (partial) epilepsies, which can manifest as a marching movement up part of the body or as a dream-like state.
Traditionally, the main places for epilepsy treatment had been lunatic asylums and special workhouse wards, often involving long-term residence. With improved understanding of the condition, this approach was considered inappropriate and antiquated. Yet 1870s measures to curb community-based welfare also meant that more people with ongoing medical issues sought institutional help; this coincided not only with overcrowded asylums – hindering transfers from workhouses – but also with the Victorian Great Depression. Amid economic contraction, those with unstable health were more likely to be laid off and less likely to gain a job. Consequently, disabled people were bundled into what William Booth, the founder of the Salvation Army, termed in his 1890 book In Darkest England and the Way Out “the submerged tenth”: the unemployed, the intractable and the feckless poor, including prostitutes, alcoholics and criminals. But others made clearer associations. Collectively labelling as “the residuum” the groups Booth identified, eugenic theories linked dilapidated dependent families with national degeneration and the need to stem breeding.
Concerns about indiscriminate handouts to the undeserving poor were already growing when the Charity Organisation Society (COS) was formed in London in 1869. Associated with the Poor Law authorities, the COS was determined to delineate those who could not work and those who would not. In 1890 the COS convened a commission centred largely on the care and training of children and adults termed ‘feeble-minded’ and ‘epileptic’. The two resulting 1893 reports implied links between both conditions and suggested that the state was failing those with epilepsy. There was a high incidence of epilepsy among people with learning disabilities – something apparent throughout the 19th century. This association meant many vulnerable people were considered physically able, but mildly mentally incapacitated. Take the girl shown in fig. 19 of A F Tredgold’s 1908 book, Mental Deficiency, written when he was advising the Royal Commission on the Care and Control of the Feeble-Minded; she was described as of unstable feeble mind, as subject to fits of waywardness that came on as suddenly as an epileptic seizure, yet also as a “good, willing [worker] and in fairly constant employment”.
Here, then, lay the quandary of all interested authorities – COS, neurologists, asylum managers, Poor Law officials, local and central government – how to stabilise the symptoms and behaviour of people with feeble-mindedness and epilepsy yet promote civilian employability for those considered most able, and secure individual improvement, even self-sufficiency, for those needing long-term specialist residential care. The answer for many was found in the COS’s recommendations for epilepsy to be the focus of the working colony. These had been inspired by the visit of Elizabeth Burdon Sanderson – a COS committee member connected to the National Hospital, whose brother was a renowned physiologist – to Bielefeld Epileptic Colony in Germany. The colony catered primarily for ‘sane epileptics’, but also those permanently mentally impaired, plus other groups in need, like the unemployed. The majority of the 2,000 colonists worked on a thousand-acre farm. Indeed, at the heart of Charles Booth’s own proposed system of colonies to assist the submerged tenth, as seen in the utopian frontispiece of Darkest England, was the stabilising working farm colony.
While there had been pioneering British sites, it was the communal, working institution that set a utopian blueprint. The first site to open on such a premise was at Chalfont St Peter, Buckinghamshire, in 1894. It was established by the recently founded National Society for the Employment of Epileptics. Its initial steering committee included Ferrier and Burdon Sanderson, who believed that people with epileptic conditions were capable of working but were failed by existing provision and shunned by employers. Ewell Epileptic Colony, opened in Surrey in 1903, was different. It was part of the Epsom Cluster of five psychiatric hospitals built by the newly established London County Council. For them, the term ‘colony’ was appropriated to indicate a collection of families or groups, as its original derivation was to till or cultivate. Indeed, it was argued, the therapeutic effects of work were pivotal to successful epilepsy treatment. Opened in 1906, the Colony of Mercy near Glasgow, Scotland, was different again. Rooted more in social care than employment, the site became part of the Quarriers Village of orphan homes, one of the innovations of philanthropist and businessman William Quarrier.
Burdon Sanderson died in 1908. That year also witnessed the publication of the Royal Commission’s report and the opening of Monyhull Colony for sane epileptics and the feeble-minded in Birmingham. It was a working farm colony, initially for 210 patients. The organisations had clashed in 1906, when officials representing Monyhull’s Poor Law founders appeared before the Royal Commission. The Commission had reservations about the definitions upon which the Colony was founded. They queried whether it was a hospital or “a place where worthless people were put to work” – something which angered a Monyhull official, who had already described people with epilepsy as intelligent. The Commission also thought the definition of feeble-mindedness to be so wide that almost anyone could be admitted. However, the site had strict criteria. Only people between 16 and 45 were to be admitted, as they were considered most able to benefit from being taught life and work skills and, if necessary, how best to self-manage their condition. As well as achieving the ideals behind employment, the Colony hoped to equip people sufficiently well to discharge them to thrive in the community.
The scene was set for a progressive, working and fluid community. A workhouse matron was appointed to manage Monyhull, emphasising the ideal of moving people off welfare. However, the visiting medical officer showed signs of eugenic thought, believing that young, feeble-minded women needed institutionalisation to protect them from moral corruption, and that this would also protect society from any similarly inclined offspring. In a way, it was not surprising that Monyhull should shift in emphasis: Birmingham was the birthplace of Francis Galton, the ‘father of eugenics’. Layperson Ellen Pinsent and Dr William Potts worked in Birmingham and were both members of and witnesses before the Royal Commission. There, they stated who they believed should be admitted to working colonies and their scope was much wider and more permanent than Monyhull’s guardians had envisaged. For Pinsent and Potts, the feeble-minded included neglected and abused children (especially girls), anyone with learning disabilities or behavioural issues (including criminality), and adults who were in and out of prison or charitable homes. Such individuals were variously described to the Commission as “truant”, “lazy’, “cunning”, “passionate”, “dirty”, “immoral”, “illegitimate” and “a permanent burden”, as well as feeble-minded, epileptic and “mentally defective”. Many were defined as the offspring of drunkards, criminals and imbeciles, “leading bad [lives]” and “losing all control over [their] children”.
The Royal Commission’s 1908 report precipitated the 1913 Mental Deficiency Act, which used former medical terminology and, with the type of descriptions heard at the Commission and elsewhere, helped create a negative public language of health and welfare policy. The legislation encompassed four categories: idiot, imbecile, feeble-minded and moral imbecile, ranging in degrees from people with profound learning disabilities to those with “vicious, or criminal propensities” largely unaffected by punishment. Throughout England and Wales, such people were to be identified, assessed and detained, if considered necessary, at a designated local facility. In Birmingham, the man who made these distinctions was Potts; the place of detention was Monyhull. So it was that in many cases resident sane epileptics were assimilated into one of the four categories outlined by the Act. A place intended to promote therapeutics, capability and civilian employment became a disabling place where the gates to the community were shut tight, loosening from the 1940s and only opening wide from the 1980s.
Preliminary research into the epileptic colony has thus yielded leads about how local definitions of epilepsy and its care played out between c.1870 and 1913 at one pioneering Birmingham facility. In contrast, initial investigations of Ewell and Chalfont suggest that the local importance and distinction of epilepsy had been markedly different. Ewell became a general psychiatric hospital in 1937, and celebrated its 120th anniversary in 2012. Chalfont has continued its nationally important epilepsy research, care, treatment and support of service users and their families. Indeed, efforts here and elsewhere have helped forge the current reassessment of epilepsy.
Last year witnessed a renewed call in the Lancet to place epilepsy high on the global health agenda. A foundation stone was laid for a multimillion-pound epilepsy centre for Scotland. And in numerous ways – from a House of Lords debate to developments in drug research to the overall winner of the 2012 Wellcome Image Awards – epilepsy is being considered in its own right. This trend is of central importance to securing, understanding and improving the treatment of epilepsy in terms of better quality of life. It needs to remain visible in society, or risk disappearing again into confusing and shifting medical definitions.
Dr Rebecca Wynter is an Honorary Research Fellow and Visiting Lecturer at the University of Birmingham. This article is drawn from preliminary research on epileptic colonies, which has fed into fresh historical explorations of child psychiatry. She currently has in press an edited collection that emerged from the newly established Institute of Advanced Studies at the University of Birmingham, Complaining about Medicine, and articles about biomedical psychiatry and public engagement (email@example.com).