Emancipatory Research — No Longer About Us Without Us

by Dr Kelley Johnson, National Institute for the Study of Learning Difficulties, Trinity College, University of Dublin

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What is No Longer Research About Us Without Us?

No Longer Research About Us Without Us is a two year project which seeks to:

  • provide opportunities for people with learning difficulties to learn how to do research,
  • work with people with learning difficulties and organisations with which they are involved on research projects
  • Investigate the usefulness of an inclusive research paradigm with people with learning difficulties in the Republic of Ireland.
  • Explore the possibility of networks of inclusive research in other countries.

The project is based at the National Institute for the Study of Learning Difficulties at Trinity College Dublin and is supported by a Marie Curie International Fellowship within the 6th European Community Framework Programme. The coordinator of the project is Dr Kelley Johnson, Marie Curie Research Fellow, National Institute for Study of Learning Difficulties, Trinity College Dublin, Ireland.

Over the next two years No Longer Research About Us Without Us will:

  • Work with people with learning difficulties and their allies to develop a curriculum that will prepare people with learning difficulties to use research methods either autonomously or in partnership with others.
  • Provide research support for people with learning difficulties to undertake research on issues important to them.
  • Explore the possibility of developing a network of researchers with learning difficulties at regional, national and international levels.
  • Provide support for interested people with learning difficulties in Ireland to contribute to a life history book.
  • Disseminate the findings from the project to organisations and groups in Ireland and Europe. As well as undertaking these tasks the project will document and evaluate its work over the two years.

The ideas in this paper are a starting point for discussion with others about the way the project will develop.

What is Inclusive Research?

Inclusive research is a term that has many different meanings for researchers and people with disabilities. In this paper I am defining it as research which:

  • Involves people who may otherwise be seen as subjects for the research as instigators of ideas, research designers, interviewers, data analysts, authors, disseminators and users. (Walmsley and Johnson, 2003, p.10)

The principles which underlie inclusive research are as follows:

  • That research must address issues which really matter to people with learning disabilities and which ultimately lead to improved lives for them
  • That it must access and represent their views and experiences
  • That people with learning disabilities need to be treated with respect by the research community. (Walmsley and Johnson, 2003, p.16)
Why This Project?

This project is being undertaken in response to a number of developments by and with people with learning difficulties over the past ten years. In the past people with learning difficulties have been excluded from much of the decision making in their lives and have rarely had a voice in presenting their own position directly to those around them. This has also been the case in relation to much disability research which has not included them within it and has not been able to be used by people with learning difficulties. The project aims to explore different ways in which people with learning difficulties can be involved in research projects from owning a research project themselves to finding ways to use it to promote change in their lives.

Increasingly some people with learning difficulties have indicated that they no longer wish to have research done ‘on’ them or to be objects of others’ research. They want to be equal partners or at least involved in its design, implementation and use. In the last ten years there has been an increasing movement by people with learning difficulties and researchers working with them to change this situation. Such research has been called participatory, emancipatory (Chappell, 2000) and more recently, inclusive research (Walmsley and Johnson, 2003). No longer research about us without us aims to develop this model of research in Ireland and then to explore how findings from the project may inform research practice in other countries.

While people with disabilities have been involved increasingly in research, opportunities for them to learn the skills and arts of doing it have generally not been available. This lack has been recognised by writers committed to the involvement of people with learning difficulties in research (Walmsley and Johnson, 2003; Ramcharan et al, 2004). There are currently no research courses available to people with learning difficulties in Ireland and very few available in other parts of the world. This project aims to develop, implement and evaluate such a course in partnership with people with learning difficulties.

The project is concerned to develop an inclusive research course using inclusive processes. People with learning difficulties will be involved in the design, development and evaluation of the course.

Who Are We?

The National Institute for the Study of Learning Difficulties is based at Trinity College Dublin. It is committed to:

  • The development of an inclusive research agenda in response to :
  • The self advocacy movement calling for the voice of citizens with a disability to be heard.
  • The need to investigate transition issues experienced by people with learning disabilities across the lifespan.

The development of a higher education programme for students with learning disabilities which aligns with the Higher Education Authority’s agenda associated with Achieving Equity of Access to Higher Education.

The Institute was established in 1998 and is currently directed by Dr Patricia O’Brien whose research interests and publications are in the areas of advocacy, inclusive education and community participation.

No longer research about us without us is co-ordinated by Dr Kelley Johnson. Kelley is on a two year secondment from RMIT University in Melbourne, Australia. She has worked for more than 15 years with people with learning difficulties in Australia and internationally. She has a particular interest in working with people with learning difficulties in research and has co-edited two books with Dr Rannveig Traustadottir to which they have contributed: Women with Intellectual Disabilities: Finding a Place in the World. (London: Jessica Kingsley, 2000) and Deinstitutionalisation and People with Intellectual Disabilities.

In and Out of Institutions (London: Jessica Kingsley, 2005). She has also written extensively about inclusive research, including a book with Jan Walmsley titled Inclusive Research with People with Learning Disabilities. Past, Present and Future (London: Jessica Kingsley, 2003) and has an ongoing commitment to people with learning difficulties leading good lives in their communities.

Principles of No Longer Research About Us Without Us

We expect that the principles for the project will be expanded and developed further during its life. The principles stated here are open for discussion and change.

  • The research course developed as part of this project will be inclusive in content and in the way it is developed.
  • The course will develop out of the interests and concerns of people with learning difficulties and will be practical in nature.
  • The course will be based on adult learning principles.
  • A reference group which includes people with learning difficulties will be established to assist in the design, implementation and evaluation of the project.
  • The course that is developed will be as accessible as possible to people with learning difficulties.
  • The research course will emerge out of practical research practice with groups of people with learning difficulties.
  • Unwaged people who are part of the reference group will be paid.
  • The course will be developed so that it can be used by organisations and academic institutions outside of the Republic of Ireland either in part or in its entirety.
What will we do?

Because this project involves working closely with people with learning difficulties and their allies, the way it develops will depend on ongoing discussions and input from them as well as the original funding submission. The ideas in this paper may well change over time but provide a starting point for the project.
Establishing a reference group.

A reference group will be established at the commencement of the project and will be involved in its design and implementation over the next two years. The reference group will consist of:

  • People with learning difficulties who are interested in Frontline Autumn 2006 research and self advocates who may represent a particular organisation.
  • A representative from each group of people with learning difficulties involved in the development of the research course.
  • Allies of people with learning difficulties who are working in organisations or services.
  • Members of the Institute for the Study of Learning Difficulties.
  • Members of Trinity College who have particular expertise or interest in research and/or curriculum design.

Members of the reference group will be found through consultation with relevant organisations and individuals and through advertisement on the Institute for the Study of Learning Difficulties web site. Terms of reference will be developed with the reference group. The reference group will meet regularly and unwaged members will be paid for their attendance. Agendas and minutes will be written in plain English and support will be available prior to each meeting for those members who would like to discuss issues before the meeting.

Involving people in the development of the research course.

In consultation with the reference group we will seek the inclusion of people with learning difficulties in the initiation and development of specific research projects and in the development of research modules which are particularly relevant to them.

At this point in time we would want to canvass interest from people with learning difficulties and their allies who are involved in the following kinds of organisations and services:

  • Students who are currently studying at the Institute for the Study of Learning Difficulties and/people with learning difficulties who may be involved as researchers in work that the Institute is undertaking.
  • Self advocates who may be members of a self advocacy organisation.
  • People with learning difficulties who are living in intentional communities.
  • People with learning difficulties who are living in residential care.

This list is not exhaustive but is based on the view that the course that is developed should include people living a wide variety of lifestyles in order to generate a wide range of research projects and topics.

The criteria for selection of people into the project will include:

  • An interest in learning about how to find solutions to problems or issues or answers to questions relevant to their lives or an interest in learning about research.
  • Being part of a group of at least three people.
  • People who are interested in making life good for people with learning difficulties.

The course development does not exclude participation by people without disabilities as co-researchers or as supporters. Criteria for inclusion in the project by people without disabilities include:

  • Commitment to the rights of people with learning difficulties.
  • An interest in learning about inclusive research.
  • Commitment to the principles of inclusive research
  • Time to commit to the process and the particular research project.
  • Skills in group facilitation

NOTE: It is possible that if there is sufficient interest, staff and/or allies employed at organisations where research projects are being developed may be able to participate in an action research module which would run concurrently with No Longer Research About Us Without Us.

The research course

The research course will be developed from the work undertaken by groups of people with learning difficulties on research topics developed with the co-ordinator of the project or other interested people. It will consist of a series of modules which will use plain English, graphics and if possible, video, to provide an accessible adult learning course. Only two components of the research course are currently set:

  • An introduction to research
  • A life history module. Other modules might include:
  • Talking and listening to people
  • Thinking about questions
  • Working with groups.
  • Making sense of what we find out
  • Making use of what we find out.
  • Using others to help us with research.
Time frame

The course will be developed with groups of people with learning difficulties over a twelve month period. Because of its action research nature, modules will be tested as we develop the course. At the end of the twelve months there will be:

  • A draft course consisting of at least 6 modules
  • Reports from five small research projects developed with people with learning difficulties. At the end of the first twelve months of the project, the course will be trialled in other parts of Ireland and Europe.
Outputs

At the end of the project there will be:

  • A course consisting of self contained modules which can be used by people with learning difficulties to learn about research.
  • A report or book documenting the project’s development over two years.
  • A life history book developed by people with learning difficulties in Ireland.

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