'A Story to Tell'- The Lifestories Project
1) What is the project about?
The Lifestories Project has been ongoing in the NIID since 2007. The project is funded by the Irish Research Council for Humanities and Social Sciences and also is one of the three projects included in the Marie Curie Transfer of Knowledge Project running here in the NIID.
Life-stories are people's reminiscences about past experiences, told to another person or persons at various points in time. Lifestories enhance identity as they express who we are and how we got that way. They allow people to connect with others and to bear witness to the social conditions through which our identities, as members of specific social groups, have been shaped and regulated.
Sharing life-stories is important. The Irish tradition of the storyteller has been a key valued role in our society for many hundreds of years. All the stories that have been passed down from generation to generation have been integral to the formulation of our culture. However, opportunities for people with intellectual disabilities in Ireland to 'tell ones story' have been limited. Often it assumed that they have little or nothing of interest to say. Other people - families, practitioners, historians - have spoken on their behalf. Key aspects of their lives have been repressed and silenced. All factors have made it difficult for older people with disabilities in particular to 'tell their story', thus to receive the necessary social validation and honouring of their lives as lived to the fullest extent as has been possible.
2) What does the project want to find out?
We want to find out what life has been like for older people with intellectual disabilities in so-called 'modern Ireland'. What have been the key experiences that have shaped their lives? What has been important to them as they have seen Ireland change and modernise over the past 80 years? What has changing Ireland, and changing attitudes toward people with disabilities meant to them, in everyday life? Has it meant anything?
3) What we did
We have worked with 22 people over the age of 55 with intellectual disabilities all over Ireland to support them to tell their lifestory. Some of the story-tellers wished for their lifestory to remain confidential. Some wished to be part of the research project which we undertook, and still more wished to share their stories with the world.
The full research project will soon be available to download and read from this website.
The stories which were gathered are now housed in an accessible online archive. This archive also has much more in-depth discussion of our methodology and includes video versions of elements of the stories, to enable them to be shared with a much wider audience.
4) What we found out
There are a number of themes that have been spoken about within the lifestories - while these themes should not be taken in isolation from the stories, it is useful to see the kinds of topics that people with intellectual disabilities have experienced throughout their lives. These themes are presented here in quotes.
Life in Services
"That was the sick ward. 'Take off your clothes', he said. 'I want you here for 3 nights only.' He told the lie. I'm still here."
"I was talking to him, and he's from Donegal now, and I said to him, 'I'm never not to go home... pray for me, that way I'd go to it,' I said.
Caring for others
"My youngest brother was only 6 years of age when (my mother) died. I looked after him and I looked after the rest of the family. I got them out to school and got their dinners ready when they got home from school."
"The rest of my brothers and sisters had all gone except me. I stopped back at my mothers'. I would never go away and leave her on her own."
"It wasn't like where you go into a job and work and get paid by the hour, you know? It was like they made allowances for you being here."
Growing up in Ireland
"We had cows and calves... the haymaking... bringing it on with the donkey and cart."
"I made home-made bread of a baker on a hearth fire. The baker was hanging on a crook, with the lid of the b aker to take the bread."
5) What we're doing next
The lifestories project is continuing in a number of ways.
a) We continue to work with Prof. Roy McConkey at the University of Ulster to collect stories of older people with disabilities from Northern Ireland. It is envisaged that some cross-border analysis of stories will take place.
b) The Lifestories website has a space where anyone can submit their lifestory for inclusion, subject to certain layout conditions. As more people hear about the project, and begin work on their own stories hopefully more stories from other groups of people will begin to emerge, such as younger people with disabilities, and those who support them.
c) As part of the Family Studies Project, Dr. Darren Chadwick will be using a lifestory methodology to enhance that study, to understand better the first-hand experiences of life as a family member of a person with an intellectual disability.
d) Zoe Hughes, the co-ordinator of the project, is undertaking her PhD studies in the area of lifestories.
e) The project staff continue to offer workshops and consultancy to those undertaking their own lifestory work around the country.