Having their say

SOME of the life priorities of people with a learning disability have been shared with service providers, parents, educators and the wider community in a unique project, including a film, undertaken by the National Federation of Voluntary Bodies and Trinity College.

The Clare Inclusive Action Research Group teamed up with fellow researchers, Galway Research into Action, to present the All-Ireland Learning Disability Research Project, All We Want to Say. The project focussed on giving people with a learning disability a say in what they wanted and a joint research programme, culminating in a drama and film presentation, by two research groups, including people with a learning disability investigating and promoting services of choice.
“These two groups were prominent contributors to a national survey, gathering information and prioritising issues which emerged from the views, opinions and desires of people the length and breadth of Ireland, including members from Clare,” Rob Hopkins, research co-ordinator with the project said.
The research findings were presented in the West County Hotel, Ennis, last Thursday.
Mr Hopkins said that there has been a move towards facilitating as normal and independent a life as possible for people with learning disabilities. “This project found that’s exactly what they want. They want to have more control over their lives but recognise that they need support to do that. They want to be part of a community and not in a token way but in real way. They also want to make a contribution to society through work and other means. For a long time, people with learning disabilities have often lived in community houses, a form of sheltered accommodation but many do not want that. The majority expressed a desire to chose where they live and with whom they live,” he commented.
He also remarked that there had been a groundswell under the advocacy movement in people talking about their own lives and wanting to have a say. “That’s why the research findings were presented under the title All We Want to Say,” he explained.
The research began in March 2008, with 16 groups in the Republic of Ireland and seven in Northern Ireland. The project involved putting a real focus on people with learning disabilities, with a core group learning to become researchers. “They were equipped with the skills to collect information, including interviewing, recording data, photographs, and making recordings, both visual and audio. They also learned how to analyse and understand what information means,” Mr Hopkins commented.
He added that the idea of integrating people with intellectual disabilities into the community is enshrined in the Disability Act, but the reality hasn’t always seen this happening to any real extent.
Mr Hopkins said that the term learning disability and intellectual disability is used as an umbrella term to include a broad range of disabilities, including  autism, down syndrome, cerebral palsy and others which have arisen from acquired injuries.
“The reality is that people should not be lumped together under any one title, because everyone is an individual and that is one thing that came across very clearly in the research. People wanted to be acknowledged as individuals, with individual needs and also individual abilities and talents – which are often overlooked,” Mr Hopkins said.
The group involved in the project is involved with the Brothers of Charity. As part of the research, some clients of the Brothers of the Charity came forward as suitable people to become researchers on the programme.
“They were facilitated in setting up focus groups of their peers. It was from these focus groups that most of the data was based. Basically, people were open about their lives and what changes they would like to help improve their quality of life,” he added.
Mr Hopkins said that the main themes which emerged as priorities for the group involved were becoming a partner in a relationship, becoming a paid employee, becoming a money manager, and being a home owner or flatmate. “In relation to each of these matters, they want choice, control and support. Across the board, people had found that responsibilities and decisions are often taken over for them,” he remarked.
Once the research had been done and clear information collected, the researchers decided that they wished to present their findings in a clever, unique way. “They did not want to just see a report published but rather to have an input in the actual presentation of their findings,” he said.
With that in mind, they produced a docufilm, using an acted out drama of some life situations, focussing on the major themes that had arisen. “Some of the participants are in the documentary and it works really well,” Mr Hopkins said.
With the Clare group involved in the project, one of their main priorities was being in paid employment. “Kevin Lynch, Ger Doohan and John Murphy, all from Ennis, and Joe McGrath from Scariff, were very involved in the project locally. Part of the presentation showed John Murphy at Clare County Council’s recycling centre in Ennis. Joe McGrath, who was a lead researcher in the project locally, noted that it was great to see Clare County Council leading by example and employing people with disabilities,” he commented.
“The documentary also dealt with forming a relationship and living with a partner, even when parents and possibly other family members and even carers, don’t agree with the relationship. There are very real issues there for people. Again, people want choice and control but also support to exercise their own choices.”
The projects findings were also presented in Galway last week. “Other groups around the country are presenting similar projects and across the board, the research findings have been very similar. The idea is to stimulate a change in attitude, policy and service,” Mr Hopkins added.
The presentation was attended by elected representatives, parents, service providers, carers and managers. “These are all people who genuinely care about people with learning disabilities but it was a good opportunity for them to hear what people want. It was an eye opener for them to see clearly the abilities that people have,” he said.
All of the information gathered by the focus groups will be presented to the National Institute for Intellectual Disability, where Dr Edurne Garcia will co-ordinate the follow-up and what action needs to be taken on these findings.
Mr Hopkins also said that the project equipped the participants with wonderful skills, in terms of producing and presenting information into a documentary-type film.
“These are skills which the participants will always have. It was fun way for them to compile their information and was wonderful for them to see themselves speak so competently about the matters affecting them,” he added.