My name is Gerard Joseph Minogue. I come from Sráid na Cathrach (that’s the Irish for Miltown Malbay) in County Clare.
Whereabouts do you live?
I live in Ashfield Park, a residential house belonging to the Brothers of Charity, Clare, the very first house that was built when the service started. I live with five other people with learning disabilities, with one or sometimes two staff supporting us. I live there Monday to Friday and then at weekends I go home to my native town in the parish of Miltown, the town land of Legard South near Spanish Point.
How did you first come to get involved in research?
Through Kelley Johnson, Professor of Disability Policy and Practice at the Norah Fry Research Centre, University of Bristol. When I first met her she was working for NIID— that’s the National Institute for Intellectual Disability at Trinity College. She was on a Marie Curie Fellowship then and she set up the ‘No Longer Research About Us Without Us’ project which supported people with a learning disability to be researchers. I worked with her on two different research projects, one about a community cafe managed by my good friend Joe McGrath.
What was that research about?
He had two questions: 1, How can I make the coffee shop better? and 2, Is it important? [to the local community]. I took photos and did observations in the cafe and then we talked together about all the things people said and what we saw. From the survey, we found out the cafe was important. It was a ‘homely place’ used by local people, artists, volunteer groups, musicians. He used the research to improve the place. People said there should be a wheelchair ramp, so he put one in. This is a picture of Joe and me walking up the new ramp.
Congress in Rome alongside some other research into the Garden Project, a workshop activity that is no longer one of the main activities in the Brothers of Charity services.
In March 2008, after Kelley Johnson’s work came to an end, we formed the Clare Inclusive Research Group with the help and guidance of Rob Hopkins, a former manager of services in West Clare.
From contacts we made in Cape Town I got interested in doing Relationships Research. Grace Kelly, a PhD student at UCC [University College Cork], had given a paper on Sexual Rights and Intellectual Disability. She became a good friend and an ally for the research work. She organised a conference through Pavilion Publishers, in Dublin in 2009, presenting our drama ‘Leaving Home’.
What was that about?
That had bits of all the different things we found out about relationships from different people talking to us. Through Grace we became part of the Irish Sex Education Network. This is now called the Connecting People Network. We met people with learning disabilities in Dublin who talked about the problems they had getting into relationships.
Our story was about a son who wanted to leave home and live with his girlfriend and the problems he had. His mother thought it was wrong because, in her eyes, he was still a baby. But his aunt disagreed. She said he must get on with his own life and she should start to let go. The mother couldn’t accept this and called the social worker who said some professional psychologists must decide if you are able to have a relationship. ‘You have to have an assessment,’ the social worker in the play says. The son got angry and frustrated and ran off with his girlfriend. Actually it was very funny ‘cos his father had hysterics and ran after him shouting, ‘You mustn’t upset your mother!’
When he and the girlfriend ran away, the social worker called the guards. We put this in because we’d heard about the 1993 Sexual Offences Act which says it’s against the law for people with learning disabilities to have intimate relationships. I felt very strongly that this was wrong. We found out this law is against the United Nations Convention on People with a Disability, Article 19, which ‘recognises the equal right of all persons with disabilities to live in the community, with choices equal to others’.
We presented this research as a Forum Theatre drama. This gave other people with disability a chance to take part. We ran the drama through once, and then a second time people had the chance to join in—to take the role of the boyfriend (or girlfriend) and explain why they should be allowed to ‘leave home’. People said things like ‘I’m not a criminal. I want to get into a relationship not go to gaol!’, ‘Just cos I’ve got a learning disability doesn’t mean I can’t learn. I want to learn how to look after my girlfriend.’ And ‘Mum, I love you but I want to be with my girl.’ That’s the name we gave to our relationships research presentation we made to the European Congress in Rome last year (2010).
How did you learn about doing research?
We have done very good research training with the Inclusive Research Network. This was set up by Professor Patricia O’Brien and Dr Edurne Garcia at the National Institute of Intellectual Disability, (Trinity College) and by Edel Tierney, Alison Harnett and Brian Donohue at the National Federation of Voluntary Bodies. We learned how to run focus groups and do interviews. I have contributed to the Relationships and Supports Study (2010) and the ‘All We Want To Say’ Learning Disability Study (2009) national research projects. We were very pleased to hear that academic papers are now quoting our research to make sure the ideas of people are included in how services are run.
There have also been stories in the local newspaper, The Clare Champion and The Clare People, and on Clare FM and on West Clare Community Radio.
You’ve obviously become very used to talking to the media. How does that help your research?
Because of the Relationships Research we’ve done and the dramas which help people talk about their own ideas, People Connect Network asked me to take part in a discussion about sex education for people with a disability on ‘Today with Pat Kenny’. It was a great day for all our group, but especially for myself and Kathleen Ryan who got to meet Pat and get across our main message that people should be given sex education and not be kept in the dark about the law. We should not be the last people to be told about these important matters.
What has being involved in research meant to you?
Doing this research has made me feel more confident in myself. I know the stuff that I’m doing encourages people with learning disabilities to express themselves. We are challenging laws and helping people to be more active in research and in their local community. Through my presentations I have shown people that I have great abilities and I feel that my family is more supportive of me. The people of Miltown Malbay have been very encouraging as they recognise who I am. One of my neighbours told me I had brought sunshine into his life! Two people with Down Syndrome in Cape Town and Natalie Groznya, the head of the Down Syndrome Association at St Petersburg, who saw our presentations in Rome, said the same thing: ‘You have been an inspiration!’ This has made me a very proud and a very happy Irish man to be able to do such a thing!
What would you like to see happen in the future following your research?
In the future I would like to see more people with disability involved in research. If the research is about us, we should be involved. For myself I feel strongly I should be getting payment for the work I am doing. We know our job, and having money for doing it would make a lot of sense. All the academics are being paid and the supporters, so why shouldn’t we?