Johnson, K., Mino, G., and Hopkins, R. (2014). From research about us to research with us. Issues in Special Education and Inclusion, 27 (1), 54 – 66.

 

This article was published in the journal Sachish – Issues in Special Education and Integration, edited by Dr. Dana Roth, head of the Research and Assessment Unit at Beit Issie Shapiro, as guest editor.

This edition contains a selection of the main lectures given by the keynote speakers and others who participated in Beit Issie Shapiro’s 5^th International Conference on Disabilities, held in Tel Aviv in the summer of 2011.

Review: Nehemiah Hai-Zion, Beit Issie Shapiro

Foreword

This article reviews how a group of self-advocates with intellectual developmental disabilities in Ireland were involved in a study of important issues in their lives, what the research meant for them, and how it developed.  

The research was carried out in a café in Ireland, by people with developmental disabilities, and with a certain amount of professional support. The research had a number of positive implications for the people in the town, such as allocating space for young people with disabilities to display their pictures, a home for musical evenings, a center for raising donations, a safe area for parents and children, and a meeting place for youngsters with intellectual disabilities. The greater part of the activities that began as a result of the research were at the initiative of Joe, a man with intellectual developmental disabilities.

Research studies of this kind help us to gain an understanding of the world of people with intellectual disabilities, to create social changes, to empower the research participants, to provide them with experiences, and more.

 

Inclusive research and its origins

Inclusive research, held in collaboration with people with intellectual developmental disabilities, offers them an opportunity to take part in the process as the initiators of ideas, as planners of the research, as interviewers, writers, distributors, and users.

It is important for such research to promote the interests of people with disabilities, for the research topics and questions to be part of their world, for it to be inclusive, and for the participants with disabilities to play an active part in the process, and in understanding and applying the results of the research. To this end, all the components of the process must be accessible to them.  

The most common way of carrying out research of this kind is through a participatory study. This type of research has been carried out in the past in Ireland, Britain, Australia, New Zealand, and elsewhere, as a tool for retaining the rights of fringe groups in their society (various ethnic groups, women, and people with disabilities).

 

No more research about us without us

 Kelly Johnson went to Ireland in order to promote an inclusive study that would provide a source for studying and developing resources, to help people with intellectual disabilities to be partners in the research about them.

The research was in three stages:

 Stage 1: Beginning

• Mapping the entities in Ireland involved in practice in self-advocacy and/or interested in developing an inclusive research, and making contact with them.
• Planning and holding workshops to train people with intellectual disabilities to carry out inclusive research, and identify the questions that are important and/or of interest to this population.
• At this stage, three issues of importance to them were identified: continuing to maintain the café; preventing closure of the garden in the sheltered workshop where many members of the group work; and preventing / limiting harassment of people with intellectual disabilities.

 Stage 2: Creating local involvement

A number of processes took place: the functioning of the café was evaluated; people with disabilities documented the importance of the garden that was facing closure, and, through interviews and writing their stories, learned that documentation helps preservation; issues relating to the members’ participation in a group of students at the University were examined; workshops were held for people with disabilities suffering from persecution and harassment; and the research group examined what leisure means to them.

 Stage 3: Implementation of the inclusive research approach across Ireland

After the project was completed and publicized, six workshops were developed on the subject of inclusive research, and presented across Ireland. An inclusive research network was established, with a countrywide base, objectives, and plan of operation. Since then, the network has carried out more countrywide inclusive research studies. In addition people with cognitive disabilities have been trained to participate in these studies, and are involved in presenting the results of the research at conferences in Ireland and international conferences.

 

Setting up the Clare inclusive research group

In County Clare it was decided, for the first time in Ireland, to appoint a “research and communication officer”, Rob Hopkins, to promote the implementation of research by people with intellectual disabilities. Ahead of forming the research group, people with disabilities were invited to a preparatory course aimed at providing them with basic knowledge of performing research, and encouraging the participants to identify issues that are important to them for a research study.

 

Project development (at the local level)

The subjects that came up in the County Clare research group were finance and budgeting, vacations and tourism, social life, intimate relations, decision-making and choice, housing and home. The issues were expressed in a number of projects, among them:

1. “The tourism challenge”

The group organized a trip that included overnight accommodation and experiences, documented it with photographs, and distributed it in a report.      

There were found to be three mobility issues: the wheelchair ramp that was blocked by a sign; disabled toilets that were blocked by a dresser; and a woman in a wheelchair was forced to wait an exceptionally long time in the local pub for service. Access to public transport services was also examined.

Following this inspection and the comments, there began to be improvements regarding some of the obstacles. The researchers involved in the research showed an interest in the access problems of other groups of people in the community, and, for example, succeeded in getting bank counters lowered for people with disabilities.

2. “A home of my own”

This group produced a film in which they interviewed three people with cognitive disabilities, who emphasized the advantages of greater control over their lives. The organization submitted an application for rent support for them. The group’s participants emphasized the importance of a home of their own.  

 

Going on to national activities

In 2008 a series of training workshops in inclusive research was produced across Ireland, and researchers from the County Clare group attended the event. The workshops led to a research study, “Everything I want to say”, which was the first national inclusive research in Ireland. The aim of the project was to discover how people with intellectual disabilities experience life, and how they would like to improve it. The project led to two other studies: “Where we live”, and “Relationships and support”, examining their views on intimate relationships. It was found that people wanted “choice, support, and control” in this area.

Use of drama

From dealing with relationships, the group developed two plays, one of them on the subject of a young man’s desire to leave his parents’ home and live with his girlfriend. This play was presented both at the Forum Theatre, and at two international conferences. The use of drama provoked interest in the media, and two of the researchers were invited to a radio panel discussion on learning disabilities and sex education. Here, the prohibition in Irish law against relations with a person with learning disabilities was discussed for the first time, something that at the outset, the researchers did not know about.

Ahead of a public relations campaign

With the preparation and distribution of the findings, the subject began to gain ground and the researchers were even invited to advise the legislative reform committee. This was the first time that researchers with intellectual disabilities were invited to the committee. One of the results is the committee’s recommendation to revoke the law with regard to relationships, on condition that protective means are supplied to young adults at risk.

 

From national action to international action

The researchers were encouraged by the fact that their participation was influential and that the national inclusive research network helped the establishment of more research networks in Europe. The research networks in Finland and in Scotland emphasized the influence of the Irish group on promoting their research.

But there are still many difficulties facing inclusive research in Ireland, particularly the economic situation in the country, and the lack of advocacy organizations with independent financing to promote the subject. On the other hand, there are various bodies supporting inclusive research, and it is hoped that this fact will continue to promote the research until an independent forum led by the participants is established.

 

 Conclusion

The purpose of inclusive research is to generate change, and remove discrimination and obstacles from this population. The involvement of people with disabilities in research is in itself part of the change, and Ireland’s example is important for promoting the subject.

 

For the full article, please contact:  tovae@beitissie.org.il