Parents and friends organisations: parents’ movement in Ireland

Like its international antecedents, the first Irish disability group emerged from a newspaper advertisement. Prompted by the lack of school facilities for her son Brian, Patricia ‘Patsy’ Farrell placed a classified advertisement in The Irish Times in June 1955 to contact parents of other ‘mentally backward’ children. The APFMBC was then formally founded at a meeting in late 1955, which was attended by more than 200.18 Established to address issues within South Dublin, the APFMBC was followed by the creation of the national umbrella organisation NAMHI in 1961.19 Although extant records are inconsistent, evidence points to the rapid development of both groups. The APFMBC opened their first ‘special school’ facility in the Dublin suburb of Ranelagh in 1956, where demand remained consistently high for decades, while NAMHI had 91 affiliated organisations across the country by the mid-1970s.20 Dominated by parents, alongside some lay professionals engaged in disability services, these organisations (like international counterparts) used those with ‘social capital’ in the local community to act as figureheads.21 During the foundation of a parents association in the west of Ireland, for instance, this included a solicitor, the manager of a local insurance brokerage and a regional journalist.22 In the APFMBC, the most prominent figure was the organisation’s chairman, Declan Costello, a member of parliament for the centre-right Fine Gael party and the father of an intellectually disabled son.23 The role of these prominent public figures was twofold, as they helped in publicising the day-to-day work of these organisations, while the involvement of significant individuals also served to limit the shame associated with an intellectually disabled relative by demonstrating how ‘it could happen in any family’.24 Parents could be ashamed of a mentally handicapped relative, illustrated by a 1952 account that noted how it was assumed that the disabled person ‘would attach a stigma to the family … [and due to this] In many cases the defective [is] hidden away in the home … The Mother continues to treat the child as a complete infant, this being the easiest method to adopt’.25 By contrast, the association of public figures with a learning disability organisation implicitly challenged this sense of shame and stigma. Similarly, anglophone parents’ groups stressed the need for mutual support and the need to secure better services for their children.26

This aligned with international trends, with parents’ organisations commonly emerging as supportive fora where members could discuss their common challenges. Interviewed in the 1990s, Patsy Farrell described how there was ‘great consolation’ through this mutual exchange of experiences, as parents began to realise that they were not alone and could begin to talk about their situation in a supportive environment.27 Dr Barbara Stokes, the APFMBC’s first medical director, accounted for the group’s rapid development due to the lack of other support for any ‘mentally defective’ child (or their parents) in the community. Families were commonly advised to seek an institutional placement, Stokes noted, a process that could conceivably take years, which left the question: what to do in the meantime while the child lived at home? The APFMBC was an attempt to address this question by providing a service that could support parents who were caring for their children in the community while also acting as a didactic forum where members could learn more about parenting a handicapped child. The group held monthly meetings in the Country Women’s Club in St. Stephen’s Green, where they could share experiences and hear lectures from guest speakers like Carlo Pietzner from the Camphill ‘curative’ school in Northern Ireland.28

Through these events, parents helped to limit their isolation by joining together to share stories, advice and information. Lectures that were frequently delivered by prominent international figures in disability gave members an insight into global developments. In March 1961, for example, Dr John Rawlings Rees, director of the World Federation for Mental Health, addressed NAMHI in Dublin. His paper foregrounded the importance of the group’s public role in supporting parents and making the disabled visible in society, arguing that they had to operate in as public a manner as possible in order to ‘develop a vaccine to inoculate humanity against prejudice’.29 Alongside their role in providing support and information, groups also became involved in the direct provision of services. These services were a central goal for groups across the country. Just months after its establishment, the APFMBC began to discuss plans for a special school in South Dublin. This contrasted against Judy Fryd’s organisation in the UK, which remained a support group for 5 years before planning their own services.30 Patricia Farrell had founded the Dublin group because of her own frustration with the lack of educational facilities available to her son in Westmeath. The speed in Ireland was likely indicative of the narrow range of support available to the midcentury parent, who could avail of little beyond long-term institutional care, a service that was itself grossly oversubscribed and prompted ‘handicap’ admissions to unsuitable settings like the district psychiatric hospital system. It was therefore understandable that the APFMBC proposed a ‘special day school’ in early 1956 which could help to educate the ‘backward child’ and simultaneously offer respite to their family carers during the school day.31 Other groups followed the same pattern; KARE in Kildare began as a parents’ discussion forum before establishing their special school facility in a local GAA (Gaelic Athletic Association, community) hall.32

These efforts reduced the stigma associated with an intellectual disability and brought the mentally handicapped greater visibility in Irish society. This trend was remarked on in a Irish Times editorial on Down syndrome in 1960, which noted the increasingly common sight of the ‘devoted and protective mother and her clinging mongol child’ in Dublin.33 Internationally, research on parents’ groups has emphasised their similarities across national boundaries, arguing that they are a broadly similar expression of postwar activism across the ‘western’ world.34 Looking at parents’ organisations in Greece, for example, Despo Kritsotaki has argued that the approach adopted by groups across Europe was broadly similar and underlined how disability was becoming ‘more than a private concern’. Pointing to how these organisations formed outside of the home, Kritsotaki posited that by forming a group, parents of the disabled entered the public sphere, which meant that families were no longer ‘handling a private issue but working for the whole of society’ when it came to disability issues.35 This transition in thinking surrounding intellectual disability, from a private family concern that was a source of shame to a more public issue, remains important and warrants further exploration across a range of national contexts. In Greece, cultural change supported publicly active parents’ organisations, which ‘viewed mental retardation as a public issue’ by the 1960s.36 Yet, this process was not so simple in every state. In Ireland, an obviously different narrative emerged, with disability becoming increasingly visible while remaining a private concern for efforts by the voluntary sector. Indeed, in the actions of parents’ groups, we can see a response that aligned with an established approach to social services while prioritising the needs of parents over their children.

Statutory responsibility?

St. Michael’s House, the state’s first special school, was established by the APFMBC in Ranelagh in 1956.37 This represented a pivotal moment in the history of disability in the state, yet it was not the first time that a parents’ organisation opened a specialist school in the state. Indeed, a range of comparable disability-specific voluntary groups were active in midcentury Dublin. The Irish Association for Cerebral Palsy, for instance, opened its first specialist school in 1950. The group’s founder, Dr Robert Collis, had repeatedly criticised the department of education for its failure to provide specialist facilities for children with a physical limitation, underlining how it was ‘impossible to teach … [those with cerebral palsy] in ordinary schools.’38 Similarly, the Central Remedial Clinic, whose early work revolved around the rehabilitation of children with poliomyelitis, opened a school at the organisation’s headquarters in Goatstown, South Dublin, in 1956.39 The voluntary-driven nature of these specialist school initiatives occurred due to established practices within the department of education, a ‘traditionally moribund’ wing of government that financially supported schools that were operated by the voluntary sector.40

This approach was rooted in 19th century practices, when the Victorian-era state had allowed the development of state-funded denominational primary schools in Ireland.41 There was little appetite to assert statutory control over this following political independence in 1922, with successive education ministers closely adhering to the limited role occupied by their predecessors, acting as a conduit for the statutory funding of schools that were owned and operated by the voluntary organisations (usually religious congregations or local churches).42 This continued into the mid-1950s, when Minister for Education Richard Mulcahy noted his personal satisfaction with a limited remit as the funder and coordinator of a voluntary education system or, as he liked to put it, the ‘plumber who would make the satisfactory connections’ to develop new schools.43 This limited engagement was despite the adoption of a new constitution in 1937, Bunreacht Na hÉireann, which placed an obligation on the state to ensure that all children receive a minimum level of education.44 This dynamic, where provision was ‘left to voluntary societies and the range of their activities’, presented an obvious challenge for families with a handicapped child.45

In line with European trends, Irish social policy increasingly oriented itself towards greater intervention in the lives of citizens throughout the midcentury.46 This process was exemplified by the formation of a separate department of health in 1947, an administrative reform that was followed by a flurry of new proposals, with officials in the new department attempting to expand access to services and address long-standing deficiencies.47 This marked the beginning of a new legislative approach to public health issues, with the 1947 Health Act and the white paper Outline of Proposals for the Improvement of the Health Services appearing to mark the start of a journey towards a public health system comparable to the British NHS.48 Yet, expansion did not occur along these lines; Sarah-Anne Buckley has noted how the state instead perpetuated an established reliance on voluntary health services, which limited the need to develop statutory alternatives. This meant that, instead of a statutory health system, voluntary provision expanded alongside the state.49

Ruth Barrington has argued that Irish opposition to growing state intervention in the mid-20th century arose from indigenous interest in applying papal teachings to contemporary social issues.50 Central to this process were the twin concepts of ‘subsidiarity’ and ‘familialism’. First articulated in Pope Pius XI’s encyclical, Quadragesimo Anno (1931), subsidiarity had a notable impact on midcentury social thinking.51 Produced during the rise of totalitarian regimes across Europe, Quadragesimo Anno sought to describe the correct ordering of society under a Catholic paradigm, arguing that the state should refrain from providing direct support but could facilitate smaller (subsidiary) organisations like voluntary organisations or families to carry out tasks on the state’s behalf. In the 1956 textbook A Manual of Social Ethics (1956), the priest, lecturer and later auxiliary bishop of Dublin, Dr James Kavanagh, described how, under a subsidiarist framework, the Irish state should remain slow to increase its social services. The voluntary sector was key, as the organs of the state ‘should not supplant them when they can partly do things but should supplement their efforts’.52 This aligned with the original papal encyclical, which affirmed how ‘it is an injustice and at the same time a grave evil and disturbance of right order to assign to a greater and higher association what lesser and subordinate organisations can do’.53 Applying subsidiarity within public policy meant consistently favouring smaller voluntary provision over wider statutory services, with state intervention ‘regarded as merely a first-aid measure’.54 This approach was particularly visible in legislative measures like Section 65 of the 1953 Health Act, which allowed the department of health to financially support voluntary organisations to provide services on their behalf, while the department of education maintained a subsidiarist approach in their development of schools through religious congregations or local churches rather than the state.55

This idea was closely linked to the concept of familialism, which prioritised the family and framed its support as an imperative for the effective functioning of the wider state.56 Mel Cousins has argued that familialism played an implicit role across all discussions on welfare expansion during the mid-20th century and that it served to limit the state’s role. This ideology, he argued, viewed that

By natural and divine law, the father of the family was bound to maintain his home for himself, his wife and his family. The state should not attempt to relieve him of this duty and privilege, but should assist him so that he could better meet these obligations.57

As others have noted, subsidiarity and familialism are both general ideas and do not offer an explicit framework for how the state should function on a granular level, only the general goals that it should aspire towards. Indeed, this ambiguity is inherent to Quadragesimo Anno, which ‘carefully avoids details and specific applications’ for its ideas.58 Building on this, Tony Fahey has suggested that the idea of Catholic-based ideological resistance to welfare expansion has been overblown by historians, noting how the hierarchy’s concern was much more ‘intermittent and unsystematic than is often believed’.59

He is undoubtedly correct, in that the church’s position evolved across the mid-20th century, so that by the early 1960s, it ‘was more likely to demand rather than decry state intervention’ on issues relating to welfare and poverty.60 Yet, the maintenance of a subsidiarist framework had obvious advantages for the state as it allowed them to financially support a voluntary organisation to provide services on their behalf. Provided under a ‘grant in aid’ rather than a contractual framework, ‘Section 65’ grants were obviously preferable to a statutory alternative for the midcentury bureaucrat. First, these grants necessitated that any services were not totally funded by the state, meaning that a proportion of overall funding had to be raised privately, either through fundraising or contributions, thereby reducing a project’s cost.61 These grants also negated any statutory liability or obligations. Services, while they may receive the majority of their funding from the state, remained private charitable initiatives that were supported by the state rather than what they were: de facto statutory services.62 Given this, there was no obligation for statutory inspections, as were required for state-run institutions like psychiatric hospitals, while it also meant that there was no obligation to ensure parity of provision in the availability of services across the country. For contemporary politicians and civil servants, operating in a period when religious congregants were plentiful and the church already played a key role in health and welfare services, the advantages of such an approach were obvious. Through recourse to subsidiarity, services could be provided cheaper, without the impediments attached to state provision, and any potential deficiencies could be framed as a failure by these individual voluntary sector groups. On top of these manifold advantages, this approach also allowed the contemporary politician to argue that they were showing due regard to the correct operation of a Catholic state, which was supposed to afford an expansive autonomy to both the family and the voluntary sector. This approach was formally endorsed by the 1960 white paper ‘The Problem of the Mentally Handicapped’, which noted how £1.6 million in hospital trust grants had been paid to religious orders for expansions to their institutional services. The white paper also commended similar voluntary efforts across the country, such as a boarding school in Cork and a Waterford day care centre, and called for further grants to support these voluntary endeavours.63

This charity-based approach shaped the discussion of intellectual disability within public fora, like the Irish parliament (Dáil Éireann), where Deputies noted the need to support these services, not as a matter of rights or public responsibility but as an example of the state’s Christian character. Fine Gael’s Timothy Manley was typical when he described the work of the Brothers of Charity at the Our Female of Good Counsel centre in Lota, Cork, as a living exemplar of Christian virtue and detailed how it was a ‘revelation to go into these institutions and see the spirit of devotion, self-sacrifice and loyalty which the brothers display towards the children’.64 The framing of this was telling, in that politicians discussed these services in terms of statutory beneficence, not responsibility. By contrast, in the UK Judy Fryd explicitly spoke about this issue in terms of the state, describing how British parents should feel unafraid to demand statutory action as it was ‘what they pay rates and taxes for - namely, education suitable for their special needs in schools specially built for the purpose’.65

Parental organisations

This cultural context shaped the response from parents’ organisations across the country, who came to occupy a central role in the provision of supports for parents and services for the intellectually disabled. Mary Daly had noted the scale of efforts by figures like John Charles McQuaid, the Catholic Archbishop of Dublin, to ensure the training of religious congregations to assess and educate the disabled.66 Yet, the recipients of this training were commonly directed to roles within schools that were attached to existing religious-operated residential facilities, such as the special school operated by the Brothers of Charity beside their centre at Lota, Cork. Given the absence of alternatives, there was an obvious burden on voluntary disability organisations to establish their own educational services, a responsibility that they came to regard as part of their broad role. Dan O’Donovan, one of the founders of the Kildare-based organisation KARE, described in a 1977 newsletter how parents with a disabled child always had a dual remit, as they had to dispel stigma and develop better services for everyone with a disability: ‘The child was born handicapped and now it is your job and mine to get on and do something about it’.67 This sense, that if parents did not act to establish appropriate services no one else would, prompted the foundation of 13 ‘special schools’ in the community by 1965.68 Mary Daly has noted how Irish parents were denied a formal role in the education system throughout the mid-20th century.69 Yet, this did not prevent parents from acting when their specialist needs were neglected by both the church and the state, both of whom failed to act to provide specialist educational facilities for the mentally handicapped child.

Indeed, this proactive approach by parents’ groups persisted and expanded over time, with the remit of voluntary organisations growing beyond a focus on services for the disabled child to include adult services, driven by the fact that the state would not provide funding for school attendance by any person over the age of 18 years regardless of their level of need.70 Faced with this, groups established facilities to address adults with disabilities who were ‘ageing out’ of the school system, which included both community-based housing and occupational training facilities. At the APFMBC’s St. Michael’s House in Dublin, for instance, they established an occupational workshop for those over 18 years, where former pupils were involved in ‘collating printed material … packing and carding “handy-packs” - ‘lucky bags’ [and] assembling simple components for [the] electrical trade’.71

While these parents’ organisations were successful in integrating some international ideas (like normalisation) into these services, ideas like self-advocacy had a limited impact. This concept, which held that the intellectually disabled were empowered individuals with agency who should be supported to make their own decisions, remained notably absent into the 1990s. Indeed, groups continued to discuss their ‘children’ within organisational documents, an understanding that infantilised disabled adults and preserved ideas about the innocence associated with an intellectually disabled person.72 Indicative of this, groups commonly pointed to the Gaelic term for a disabled person, duine le dia or person of God, as evidence of the innocence associated with the mentally handicapped.73 The implications of this went beyond semantics in that it maintained services in the realm of charity, meaning that the intellectually disabled—alongside victims of a humanitarian disaster or abandoned pets—were worthy because of their blameless nature. These ‘people of god’ were entitled to services due to their nature, not through recourse to their constitutional rights as citizens. This influenced the way groups developed services, prompting an overwhelming emphasis on public fundraising initiatives by local groups. The parents and friends organisation at the Saint Augustine’s Institute in Blackrock, for instance, were involved in the construction of a series of chalets on the grounds of the main institution. Rather than asking the state to pay for this accommodation, the group raised the funds for this project. Dun Laoghaire Soroptimist Club furnished one of the houses, while the nearby confectionery manufacturer Rowntree-Mackintosh donated a minibus for the complex.74 They also carried out a sizeable fundraising campaign to equip a playground, an initiative that was also supported by a local youth club.75 This ad hoc approach, which meant developing an individual service to address an existing need, remained in place. Rather than calling for systemic reform, or widespread statutory engagement, groups continued to provide services wherever they could in this fashion, an approach that fundamentally shaped the nature of ‘handicap services’.

The conception of the disabled as ‘eternal children’ among parents’ groups also shaped their identity, as they commonly viewed parents as the pivotal figure in changing public perceptions around intellectual disability. They were clearly groups for the intellectually disabled, not representative of them. Johnny Mee, from the rural Western Care organisation, explained how his group was being innovative in foregrounding parents, when openly talking about a child’s disability ‘was something that never had been tried or never been achieved in Mayo. It was almost like putting the first man on the moon’.76 In their efforts, organisations viewed themselves as the pivotal interlocutors between the disabled person and the wider Irish society. Given this, their perception of disability remained important, as this shaped their activities. Commonly, groups acknowledged the biological aetiology of disability and sought the help of medical professionals in shaping their discussion, as when NAMHI’s booklets were produced by Dr Noreen Buckley. Disability was, to an extent, viewed as an immutable biological category, as parents were encouraged to accept their ‘child’s limited capabilities’ and, from the mid-1960s, there is some discussion of the genetic basis of conditions like Down syndrome.77 Nonetheless, groups also noted the importance of wider society in supporting the intellectually disabled to best develop their abilities, thus moving closer to the social model of disability, which foregrounded the need for services that helped the disabled to function effectively in wider society and emphasised the societal dimensions of an individual’s cognitive limitations.78

When it came to the intellectually disabled, reliance on this voluntary-driven approach meant that provision emerged slowly, often requiring years of ‘flag days’ and fundraising efforts before being able to establish any facility. When a group (eventually) received their statutory funding, it was via Section 65 grants through the department of health or the partial funding offered by education, both of which discouraged any further innovation, out of fear that this precarious funding could disappear in the following year. Section 65 payments remain an opaque process into the 21st century, with little visible rationale for their varying payment rates or diverging practices nationwide.79 Inevitably, this funding structure influenced the approach adopted by voluntary organisations, with these (seemingly arbitrary) grants discouraging both criticism of the state and innovation in their actions. Groups were understandably hesitant to highlight any statutory deficiencies, while the department’s opaque approach also discouraged groups from changing their practices or reforming ailing services. Tom Fallon, again from Western Care, described the precarious nature of the organisation into the 1980s due to this funding structure, where ‘We always had financial fears, all along the line … there were months when the money wasn’t in the kitty to pay my wages’.80 Reliance on parents’ groups to manifest services also meant that disability provision frequently represented the goals of an organisation’s committee, rather than their service users, producing facilities that were a respite for home carers through a limited education in special schools or diversionary ‘training’ in an occupational workshop. The state could not know this, however, as its lack of statutory oversight meant that it financially supported services that were supposed to advance specific policy goals (around integration and normalisation), but could never ensure that provision was actually matching up to these new standards. This meant that voluntary organisations had the autonomy to develop their own programmes and could draw from existing models established elsewhere, but there was equally no oversight of the nature of these services or any efforts to ensure their consistent availability across the country. In practice, this structure meant that parents’ organisations adopted a broadly similar approach across the country, establishing the services they considered to be necessary, with varying results, like when St. Gabriel’s School in Limerick provided ‘classes’ that were taught by nurses instead of teachers.81