‘Telling it makes it real’: On collecting activists’ stories


Picture this scene. A PhD student is sitting in a drafty church hall in the west of Ireland. The tea is bad, the hall is (always) cold, and there are five women crying their eyes out in front of him. Uncomfortable, no? To be clear, in this scenario the student is not some hardboiled journalist who has relentlessly hounded these women, nor is he asking Oprah like questions just to make them cry. I’ve been that student for more than a year now, and have learned so much from my experience of collecting activist stories. Yet, this work hasn’t been a natural fit with my personality. As, if I’m being honest, I began studying history to avoid all that messiness associated with human experience. Sampling classes during my first weeks in University, my liberal arts programme seemed to offer multiple routes towards a better understanding of the human condition. However, history was always the one for me. Compared to sociology, politics, or psychology, history offered the ability to study people from an objective distance. Napoleon was never going to complain to my Professor about a survey’s methodology, while Stalin was unlikely to worry about my critique of his time as General Secretary of the USSR. From an elevated perch, history offered the chance to objectively understand the business of this world, while using cold, clear facts. Well, that was the idea anyway. What was it that Robert Burns said about ‘the best laid plans of mice and men?’ My plans do seem to have gone a little awry, as I now spend a large amount of my time listening to the always interesting, (frequently) funny and (often) meandering stories of Irish disability activists.

As a task, interviewing Irish disability activists is not difficult. Within minutes of talking to them, the narratives tend to start to pour out in a great cascade. Stories of a bureaucracy that doesn’t care, services that never materialise, promises that are broken again and again. All they want to know is whether you care, and if you do then they will let you into this world. I was lucky enough to grow up knowing people who were involved in this activism. Yet, it was only once I sat down with a dictaphone and a set goal that I began to realise the extent of their labours. All of sudden the walls of local resource centres seemed a little taller, with the realisation of the sheer effort and force of will that went into constructing them. In Ireland, the role of activism for the disabled was a particularly important force during the latter half of the twentieth century as the combined indifference of the Irish state and the strength of the Catholic Church rendered the disabled voiceless. Those with a disability were frequently described as emblems of shame to their families, their conditions taken as a divine judgement on their family. Indeed, this view is even reflected through the Irish language, which describes the disabled person as ‘Duine le Dia’ or ‘Children of God’. In this stultifying cultural landscape, there was a clear advocacy roles for parents, siblings and wider relatives in campaigning for the rights of those with a disability. This role manifested itself in different ways, such as in spotlighting the physical abuse inflicted on vulnerable citizens within state funded institutions, in campaigning for greater accessibility to public services and in highlighting the need to consider all citizens of the nation as equally.

Yet, to achieve this involved more than a few unusual tactics. It’s usually over the third cup of tea, when it is decided by some unspoken code that it is time to tell me ‘the really good stuff’. I have heard of activists donning waiters uniforms to sneak into a formal dinner in the hope of snatching mere seconds of an appeal with the Minister for Health. Described through fits of laughter, such acts are remembered with great tenderness, and more than a little disbelief. ‘Sure, we were so brave back then, weren’t we?’ Then the curtain of fear descends again and it is enforced on me how this cannot be told, lest it endanger their child or sibling and their place in care. As always, I ensure that I will tell nothing.

This begs the question, why collect these stories then? What use do they serve? They offer little direct help to the activists concerned, beyond the faint assurance others are interested in their work. Well that answer came to me when talking to a lady from the North of the country. At five foot nothing, and slight as a twig, she wasn’t in the least bit physically intimidating. Yet, she walked into the hall with the purpose of General MacArthur and threw her handbag onto the table. ‘Is that on?’ she asked, gesturing to the tape recorder. I began to explain that it wasn’t yet on, as I like to explain what will happen in the interview before the tape starts. ‘I don’t need anything of that, fire it up. I’m in the mood to tell the truth, and I’m afraid I’ll lose my courage if I don’t do it quick.’

What followed was one of the most revelatory conversations of my life. That lady, lets call her Anne, opened up her life to me. She described the shame associated with having a baby with Downs, a shame that was only compounded when local teachers laughed at the idea of her daughter attending school. Yet, she enforced to me, ‘I learned to fight for her, as she didn’t have anyone but me to fight for her.’ At the end of our talk, she grabbed my hand. Startled, I met her eye. ‘Thank you, for listening to me, because talking about these things makes it real, makes it real for me anyway, and it’s nice to know that I’m not alone in this.’ For me, I can’t think of a better reason to keep at this project. So I’ll keep sending out letters and knocking on doors, playing my own small part in making this larger narrative ‘real,’ one story at a time.



Recently, the Museum of disABILITY History received correspondence from a Ph.D. student, David Kilgannon, who lives in Ireland. He has an interest in presenting his research and opinions on the conditions and programs for people with disabilities. David’s main research focus is the changing systems of care for the disabled in Ireland 1948 – 1996.  

David is working on this Ph.D. at the University of Ireland, Galway. As his work becomes available, we will post it on the Museum’s blog. The perspectives of another country’s history of people with disabilities will be a valuable addition to our blog. Differing experiences and points of views are welcomed.

Jim Boles