‘Collecting the Scraps’: Intellectual Disability & Irish History
By David Kilgannon
I never intended to become involved in the creation of a history of the experience of people with intellectual disabilities in Ireland. Despite growing up with an intellectually disabled aunt, such an effort seemed simultaneously difficult, messy and filled with sad stories. Instead, when I enrolled as an undergraduate I gravitated towards the history of law. You see, the history of the law had rules, it followed conventions. To be ‘to the letter of the law’ meant to do it exactly right, and something about that idea really appealed to my Type A personality. However, one day changed all that. After a charity walk for a local disability resource centre I began talking with some of the parents of the centre’s service-users. They talked about their experiences as semi-professional disability activists, campaigning for resources from a frequently indifferent state. Then they asked me: ‘You studied history, was our experience that exceptional?’ I tried to politely explain that this wasn’t my area. I was studying clear cut laws, not people’s experiences, but I would find the answer for them. The next week, I began to search for a history book on disability in Ireland, and failed. Despite Ireland being the first state outside the US to host the Special Olympics, despite the numerous investigations into conditions and practices affecting the disabled, there was no one really telling the ‘story’ of the intellectually disabled in Ireland. My interest piqued by this gap, I was lucky enough to intern in the Irish national health service, the Health Service Executive, where my brilliant mentor Ms. Caoimhe Gleeson helped me to become immersed in the policies and legislation affecting people with an intellectual disability in twenty-first century Ireland. I loved the process and challenges around policy making, but the lack of history for this community continued to reside in the back of my mind.
Indeed, the idea that there was nothing out there to provide context to the experiences of people with intellectual disabilities in Ireland really upset me. I had taken classes in Human Rights Law, where one of the most fundamental things we were taught was the right of everyone to be a part of a wider community. How could people with intellectual disabilities, and those involved in campaigning for their rights, be a community if they didn’t have a history? Although I hated this gap in our historical knowledge, I was definitely not interested in filling it. That was someone else’s job. Yet, here again I was shaken out of my complacency. A few weeks later, when working on my Master’s dissertation on AIDS activists in Ireland, a line from a handwritten book of testimonials lodged itself in my mind. ‘I don’t need pity, I don’t need sad looks. I need you to give me a hand, to bake me a cake, and help me tell my story.’ Sitting in that archive, I made a resolution. I may not be the best person to collect stories for a history of people with intellectual disabilities in Ireland. Despite this I was going to try, and hopefully this might attract others into studying this topic.
Indeed, once I started to dig I realised that Ireland has a unique history of engagement with intellectual disability, different from both North America and the rest of Europe. Firstly, there was the legacy of British colonialism. This left Ireland with one of the most extensive network of Asylum services in Europe, prompting a trend where disabled children were sent to these mental hospitals. Hospital records show a large percentage of each hospital contained the ‘defective children,’ a trend which continued until the mid-1970s. A second factor was the dominance of the Catholic Church in Ireland. The church remained incredibly influential from the state’s foundation in 1922 until the mid 1990s. This shaped the way the state planned services for the intellectually disabled, frequently relying on Catholic religious orders to ‘step in’ and set up an institution where there was deficiency in state services. A third factor was the relative poverty of the Irish state for most of the twentieth century. There are numerous examples of where the state said that it could not step in due to budget issues. For example, the case of Veronica Loftus, a 32 year old intellectually disabled woman who died in an apartment in Dublin in 1961. At the inquiry into her death, it was found that she was severely malnourished and weighed only 56 pounds at the time of her death. Yet, in the Irish Parliament (Dáil Éireann) the Minister of Health said there was nothing he could as she was already receiving a disability allowance, and he criticised her family for not stepping in to help her.
There are so many different strands to this story that at times it can feel overwhelming. A sociologist friend of mine once condemned my work as ‘collecting scraps’ of people’s stories and experience. To her, my archive searches and oral histories lacked value as they were not large-scale and lacked the critical methodologies of her research. Even though she was criticising me, her idea of ‘Collecting the scraps’ continues to strike me as such a beautiful way of describing my research. In collecting the small samples of experience from across the twentieth century, I am trying to gather metaphorical scraps, in an attempt to weave a wider patchwork that reflects the diversity of experience throughout this period.
David Kilgannon is a Wellcome Trust PhD researcher in the History Department of the National University of Ireland, Galway. He was previously a Hardimann Scholar and a Wellcome Trust MA student. His research looks at the varied experiences of persons with intellectual disabilities in Ireland from 1947 to 1996. His previous research looked at the experience of AIDS activists in Ireland from 1983-9.