Published for the British Institute of Learning Disabilities
Journal of Applied Research in Intellectual Disabilities 2014, 27, 76–84
Inclusive Research: Making a Difference to Policy and Legislation Kelley Johnson*, Gerard Minogue† and Rob Hopklins† *Norah Fry Research Centre, University of Bristol, Bristol, UK; †Brothers of Charity, Ennis, County Clare, Ireland
Accepted for publication 22 October 2013
Background While inclusive research has become an important stream in research with people with intellectual disabilities, there is a tension between the possibly empowering research process and the strength of the research itself to make social change happen. In this paper, we explore the contribution of two inclusive qualitative research studies in Australia and the Republic of Ireland to change in policy and legislation. Materials and methods Both studies used qualitative methods including life stories and focus groups to explore the issue of sexuality and relationships. In both studies, people with intellectual disabilities were actively involved in undertaking the research. Results Both studies revealed that it was difficult for people with intellectual disabilities to express their sexuality openly or to form adult relationships. Conclusions Both studies were used by people with intellectual disabilities and their supporters to promote change in which they had a heard voice. Accessible Abstract This paper is about how people with intellectual disabilities and their supporters can use research which they have done to change policies and laws that affect them. When people with intellectual disabilities are doing research it is called inclusive research.We write about two research studies which were about the sexual lives and relationships of people with intellectual disabilities. One research study was in Australia and one was in the Republic of Ireland.In the Australian study, Living Safer Sexual Lives, 25 people with intellectual disabilities told their life stories and talked about sexuality and relationships.In the Irish study people with intellectual disabilities told life stories and talked with other people with intellectual disabilities about their sexuality and relationships in groups. These are called focus groups.In this paper we explore 4 questions that arose from these studies. © 2013 John Wiley & Sons Ltd
Question 1. What impact does doing research have on the people who are involved in it? People with intellectual disabilities in Australia were members of the group that guided the research. They were partners in its design, in deciding what questions should be asked about sexuality and relationships., and thinking about what was found out. They became involved in making films about the study. They learned a lot about research, sexuality and relationships and became members of a government committee to change policy about sexuality and people with disabilities. In Ireland people with intellectual disabilities involved in doing the research talked together about their lives. They then talked with 16 groups of people with intellectual disabilities about their relationships and sexuality. They learned about research and about sexuality and developed plays about their experiences. Question 2. To what extent can inclusive research change policy and practice? In Australia the research led to a change in government policy about sexuality and people with disabilities. The new policy clearly stated people with disabilities had rights to relationships and to a sexual life. It set out rights and responsibilities for people with intellectual disabilities and service providers about relationships and sexuality. It took a long time to get a change in policy and people with intellectual disabilities were part of the getting the change to happen. In Ireland there is a law which says that it is illegal to have some forms of sex with people with intellectual disabilities. From the research people with intellectual disabilities became involved in talking with government about changing this law so that it gives them more rights to a sexual life. The law has not changed yet but the voices of people with intellectual disabilities are now being heard. Question 3 When does research shift into being advocacy? How does this happen? People with 10.1111/jar.12085
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intellectual disabilities in both studies became advocates to get change to happen. Partly this was because they had become more ‘expert’ about sexuality and relationships and the policy and law. They were angry at what they had found out in the research and wanted to get change to happen. Question 4 What added value does including people with intellectual disabilities as researchers give to the
Introduction Research is carried out for many different reasons: because we want to understand our own lives and those of others better, because we want to add to the sum total of our knowledge and because we want to use it to bring about social change (Brechin & Sidell 2000). Inclusive research is research that involves people with intellectual disabilities as active researchers who are ‘instigators of ideas, research designers, interviewers, data analysts, authors, disseminators and users’ (Walmsley & Johnson 2003, p. 10). Such research represents a movement from a research model in which people were ‘subject’ to research to one in which they are accorded respect, are seen as experts in their own lives and can be agents for change. The principles of inclusive research clearly demonstrate this change in approach: 1. That the research problem should be owned (not necessarily initiated) by people with disability. 2. It should further the interests of people with disability; researchers without disability should be on the side of people with [intellectual] disabilities. 1 3. It should be collaborative people with (intellectual) disabilities should be involved in the process of doing the research. 4. People with [intellectual] disabilities should be able to exercise some control over process and outcomes. 5. The research question, process and reports must be accessible to people with [intellectual] disabilities. (Walmsley & Johnson 2003, p. 64) There is a strong emphasis in inclusive research on the empowerment of people with intellectual disabilities who are coresearchers. Empowerment in this context can be seen as increasing power in relation to the resources involved in doing research, information 1 Intellectual has been inserted by the authors in this quote as the book from which it is taken focuses on inclusive research and people with intellectual disabilities but in this quote does not use the term.
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research? People with intellectual disabilities had knowledge and experience that made it possible for the research in both Australia and Ireland to happen. They were important in how the research was done and what was done with it after it was finished. Keywords: inclusive research, intellectual disability, law, policy
gained from the research about the barriers that people with intellectual disabilities experience, changing relationships between those involved in the research and in the capacity of people to advocate for change and in taking decisions on what to do in order for change to happen (Benn 1981; Barnes 2003). However, there is an implicit (and sometimes explicit) tension in inclusive research between the importance of the process of doing the research and the power that people with intellectual disabilities may gain from this and the strength of the research itself to make social change happen. In this paper, we explore how inclusive research may support people with intellectual disabilities to do research about issues important to them and how far it can then contribute to changes in law, policy and practice at a local or national level. The paper draws on two examples of inclusive research about sexuality and relationships and people with intellectual disabilities that were undertaken in Australia and the Republic of Ireland, respectively, and in each of which one of the authors of the current paper was actively involved. Both studies were undertaken because of concerns about the barriers that people with intellectual disabilities faced in expressing their sexuality or in having sexual relationships. However, the legislative and policy context for each was different. In the Republic of Ireland, the Criminal Law (Sexual Offences) Act Ireland (1993) forbids penetrative sex with people with ‘mental impairment’ unless they are married. There are no government policies in relation to sexuality and relationships although some services have developed their own. In Australia, there is no law forbidding sexual relationships (except between service providers and clients) by people with intellectual disabilities. However, the state government policy prior to the research had a strong focus on safeguarding and protection and little focus on rights. Both of the studies used as case studies in this paper have been previously published (Johnson et al. 2000;
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Harrison et al. 2002; Bane et al. 2012). The aim of this paper is to revisit them in terms of four questions arising from the use of two different models of inclusive research: 1. What impact does doing research have on the people who are involved in it? 2. To what extent can inclusive research impact on policy and practice? 3. When does research shift into being advocacy? How does this happen? 4. What added value does including people with intellectual disabilities as researchers give to the research? The need for a consideration of these questions was revealed in the findings from a national study in the UK that sought to establish research priorities in relation to issues important to people with intellectual disabilities. A consultation with academics, people with intellectual disabilities, service providers and families revealed that 5. The six most important areas of concern for people with learning disabilities were access to health care, getting good support, the right to relationships, housing, work and personal finance, inclusion in the community. 6. There is a large volume of academic research in these areas, but people want more research about action, which helps us to understand how to make changes.(Williams et al. 2008, p. 6) The degree to which action can arise from inclusive research is the focus of this paper. The paper was written as ‘inclusively’ as possible within academic constraints. We discussed the ideas for the paper together, shared the writing and worked together on the accessible summary which was written with the author with intellectual disabilities.
Living Safer Sexual Lives Introduction Living Safer Sexual Lives was a three-year action research study about sexuality and relationships that included the voices of people with intellectual disabilities themselves. The research was initiated by a group of academics who had worked with people with intellectual disabilities and who had experience in working on issues about sexuality. They were concerned about the lack of research on this issue which directly involved people with intellectual disabilities, the high levels of sexual abuse and exploitation of this group reported in the literature (McCarthy 1999) and about
their vulnerability to sexually transmissible disease (Johnson et al. 2001).
Materials and methods A preliminary consultation was held with approximately 20 people with intellectual disabilities who were contacted through self-advocacy organizations to check that this was research that they thought was important and which should be undertaken. Support for the research was unanimous in the group. An advisory group consisting of people with intellectual disabilities, service providers and advocates was established. All non-salaried members of the advisory group were paid. The advisory group provided guidance to the researchers about the design of interviews and access to people with intellectual disabilities. Early in the research, the advisory group made a decision that members would not contribute their life stories to the study and that they would not be involved in interviews because of concerns about confidentiality. All advisory group members were directly involved in data analysis and the development of resources that emerged from the research. Ethical approval for the study was obtained from the university ethics committee before the study commenced. In the research, 25 people with intellectual disabilities contributed their life stories which did not separate out sexuality and relationships from the rest of their lives. The life story tellers included men and women, younger and older people and those who had lived in institutions and those who had lived all their lives in the community. It also included people who lived in rural and city areas. At least three interviews were held with each life story teller, their stories were recorded, transcribed, and their life stories were written using their own words. The stories were taken back to each contributor for approval. The stories were analysed with the advisory group. Each story was read aloud several times in small groups and themes arising from the story were identified by the group. Care was taken to ensure that paid counselling was immediately available for life story contributors who were concerned about issues arising from their participation. No one needed to avail themselves of this resource.
Results and discussion The findings from the research revealed that the life story tellers had received little education about sex or © 2013 John Wiley & Sons Ltd, 27, 76–84
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relationships. Often the information they had been given was very negative, had occurred only once or when they were not ready for it. For example, Hussein2 commented in his life story: Nobody told me about me body and AIDS. When you’re young and you get older your body changes and that and your voice. When you have sex with someone, sperm comes out. Whereabouts is it in your body? I didn’t know your body can produce that. Can it?(cited in Johnson et al. 2001 p. 60) The stories revealed people who wanted to have a close relationship with someone else or wanted to express their sexuality freely. So David commented: I’d like to get married some day, but I haven’t met anyone yet. It’s difficult to do that. I used to have high hopes and then that’s been crushed, so I have small dreams. I have lots of small dreams.(cited in Johnson et al. 2001 p. 47) Some people had achieved a positive and safe expression of their sexuality. However, the majority of participants were lonely and only dreamt of having close relationships. Ten of the 13 women had experienced abusive or exploitative sexual relationships, and seven of the 12 men reported some form of abuse. People’s sexual desire, dreams and needs were unique to each person. Often they led sexual lives that were unknown to those about them. People hid their lives because they were very aware that their sexuality was regarded as problematic, or it was actively discouraged or prohibited. This had led some people to be at risk or to have bad experiences. For example, Angela had a partner whom she saw as ‘loving and understanding and caring.’ However, she had to keep her sexual life hidden from her parents: I ‘ve never talked about it at home, mum’d have a fit (cited in Johnson et al. 2001 p. 58) The outcomes of the research included the development of workshops for people with intellectual disabilities, families and service providers (Frawley et al. 2003), the production of three short films of the stories narrated by members of the advisory group, and the research led to a change in government policy.
Living Safer Sexual Lives: Reflecting on the Study In relation to the four questions posed earlier in this paper, the study provided evidence to support the view that inclusive research can have a direct effect on policies.
What impact does doing research have on the people who are involved in it? The research profoundly challenged the ideas and beliefs of the researchers and members of the advisory group. It took time for people with intellectual disabilities to feel confident in discussing a topic that had been frequently labelled as ‘private’ and not for public discussion. However, during the research, they became active members of the research team. They were involved in designing the best ways to access possible contributors, solving ethical problems, the development of interview questions, analysing the life stories, speaking about the study to the media, and they took part in developing resources for the workshops. Two of the self-advocates became members of the committee established to change government policies. However, in this research, people with intellectual disabilities were not involved in contributing to, or collecting the life story interviews nor were they cofacilitators in the workshops that resulted from them. More recently, a new project, Living Safer Sexual Lives: Respectful Relationships (Frawley et al. 2010) which was directly related to the earlier research has involved people with intellectual disabilities as facilitators in workshops on sexuality. The research also affected the attitudes of advocates and service providers who were on the advisory group. It was as a direct result of this involvement that the Office of the Public Advocate3 lobbied the government for a change in sexuality policies in the state. Living Safer Sexual Lives was a team project which focused on the advisory group. The researchers contributed their knowledge of sexuality and relationships and research methodology. The people with intellectual disabilities contributed their lived experience, their knowledge of the best ways to undertake research on a sensitive topic and their
3
2
All names of people have been changed.
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The Office of the Public Advocate is an independent statutory body which works to protect and promote the interests, rights and dignity of people with a disability.
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advocacy skills. The advocates became key players in ensuring that change happened as a result of the research.
To what extent can inclusive research impact on policy and practice? The research was used by organizations that had been part of the advisory group to lobby government for a change to the existing policy in relation to people with disability and sexuality. This did not happen easily, but the research evidence was compelling because it consisted of direct accounts of people’s lives. The importance of having powerful people on the advisory group was brought home to the research team when the Office of the Public Advocate began to have meetings with government representatives. The result of these meetings was the establishment of a committee that included researchers and people with intellectual disabilities from the advisory group. The task of the group was to advise on drafting a new policy for the state government in relation to sexuality and relationships and people with disabilities.4 The committee met over a period of 2 years. It was not an easy task to draft a new policy. Drafts went through a number of different filtering systems including the legal department of the government department. While the resulting policy was not ideal, it did have the following features: 1. It did not treat sexuality and relationships as problems but saw them as a ‘normal part of the lives of people. 2. It took account of the need for safety and for rights, acknowledging the importance of both of these issues. 3. It was based on a rights and responsibilities approach and makes these clear for people with disability and for those who work with them (Disability Services, 2006).
When does research shift into being advocacy? How does this happen? Self-advocacy groups were part of the research from the beginning with representatives sitting on the advisory group. Involvement in the research led gradually to an increasing knowledge of the issues affecting people with
4
The government policy included all people with disabilities not only those with intellectual disabilities.
intellectual disabilities by those on the advisory group. This led to members of the advisory group becoming strong advocates for change. However, formal advocacy in relation to the issues of sexuality and relationships really began after the research itself was finished. The funding body had provided money for developing resources and activities that emerged from the research findings. Self-advocates became part of the committee developing a new policy on sexuality and relationships. They also played a role with other organizations in writing letters of support for the development of a new policy when legal concerns about it were raised by the government department.
What added value does including people with intellectual disabilities as researchers give to the research? The involvement of people with intellectual disabilities was central to the development of the research and its success in achieving change. The self-advocates on the advisory group contributed their knowledge and skills in developing the research. Their awareness of the difficulties of speaking about sexuality and the barriers that people with intellectual disabilities experienced in this area of their lives contributed to the sensitivity and the safeguards that were built into the study. They contributed to the development of the themes arising from the stories. Their growing confidence in discussing the issues led them to be strong public speakers for change resulting from it. Without their contribution, it is doubtful whether the research could have been completed successfully or could have led to a change in policy.
Sexuality and Relationships in the Republic of Ireland Introduction The second study focuses on inclusive research that has led to efforts by people with intellectual disabilities and their supporters to change the law in Ireland in relation to sexuality and relationships. The Criminal Law (Sexual Offences) Act Ireland (1993) in the Republic of Ireland makes it a criminal offence to have penetrative sex with a person with ‘mental impairment’ unless they are married. Within the Act, mental impairment means a person ‘suffering from a disorder of the mind, whether through mental handicap or mental illness which is of such a nature or degree as to render a person incapable of living © 2013 John Wiley & Sons Ltd, 27, 76–84
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an independent life or of guarding against serious exploitation’ (Criminal Law (Sexual Offences) Act Ireland 1993. Section 5: Article 5). The possible punishments for the offence include lengthy jail sentences. While the Act sought to protect people with intellectual disabilities from exploitation and abuse it fails, ‘to provide sufficient clarity that it recognizes the rights of persons with intellectual disability or limited capacity to have a fully -expressed consensual sexual life.’ (Law Reform Commission 2011, p. 14). While nobody has ever been charged under this Act, it has had a profound effect on the way sexuality and relationships are seen by service providers working with people with intellectual disabilities in Ireland, as any support they may give to people in relation to the development of sexual relationships could be seen as collusion in breaking the law. The need to change the law has become an important part of the work of an inclusive research group in Ireland. The Clare Inclusive Research Group was formed in 2008 by the Brothers of Charity, an organization providing services for people with intellectual disabilities. The group consists of ten people with intellectual disabilities who use the service and a research and communications officer, who is funded on a three day a week basis. In addition to undertaking its own research projects, the group is part of a national network of inclusive research that is jointly auspiced by the National Federation of Voluntary Bodies and the National Institute of Intellectual Disability at Trinity College. It therefore has strong links with both a national service provider organization and academia. Over the past 4 years, the group has undertaken research on housing, relationships and transport issues (Inclusive Research Network, National Federation of Voluntary Bodies & National Institute for Intellectual Disability 2009, 2010).
Materials and methods The Clare Inclusive Research Group expressed an interest in issues around relationships and sexuality as one of their research priorities. The members began by sharing life stories and talking with other people with intellectual disabilities about their experiences. They became involved as researchers in a study by the national inclusive research network on relationships and support (Inclusive Research Network, National Federation of Voluntary Bodies & National Institute for Intellectual Disability 2010). In this research, the Clare Group gained training in research and cofacilitated © 2013 John Wiley & Sons Ltd, 27, 76–84
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sixteen focus groups with people with intellectual disabilities around Ireland. Ethical approval for this research was obtained through the relevant university ethics committee.
Results and discussion Thematic analysis was used to identify key themes arising from the research. The Clare Inclusive Research Group was involved in discussions about the themes. The findings, while not specifically focusing on sexuality, revealed that participants wanted a ‘girl friend’ or ‘boyfriend’ and support from service providers and families when they did this. They felt that they were ‘often treated like children over boyfriends and girlfriends’ (Inclusive Research Network, National Federation of Voluntary Bodies & National Institute for Intellectual Disability 2010, p. 2). Using the research findings they had gathered in their own discussions and from the wider research, the Clare Group developed a drama called ‘No Kissing,’ which was first performed at the annual general meeting of the Irish Sex Education Network, (now known as the Connect People Network) a peer support group of people with intellectual disabilities who meet in Dublin. Later, using information and reflections generated through meetings with this support group the Clare researchers devised a further drama called ‘Leaving Home’. This play was first presented in Clare as a piece of Forum Theatre (Boal 1982) and then at two national conferences. Forum Theatre creates a socially oppressive situation staged to induce empathy in the audience who are actively encouraged to intervene and suggest or come on stage and enact solutions to the dilemma that has been played out. It ‘asks its audience questions and expects answers.’ (Schechter 2003, p. 266). The research and communication officer was trained in Forum Theatre and discussed it with the research group as a possible way of disseminating their research. The use of drama brought the group to the notice of the media, and two researchers were called to participate on a discussion panel about intellectual disability and sex education on a national radio programme alongside an advocate representative and the parent of a young woman with a learning disability. As a result of the research, the drama and media appearances, the issue of the prohibition under Irish law of penetrative sexual activity with a person with intellectual disabilities was first discussed in the group.
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They had not known about this Act and responded to its provisions with anger and outrage: Why are we being singled out for special treatment with secret special laws that do not reflect our opinions and have the effect of creating a barrier to our acceptance and inclusion? Staff and families knew about this law but we were never told.(Clare Inclusive Research Group, 2011) The group wanted to find out why the law existed and they wanted to campaign for it to be repealed. One group member raised the question: Can we talk to people about it? And ask people why?(Hopkins 2009) As the Clare researchers grew in confidence through participating in research training, carrying out research and disseminating its findings to their peers and the broader community through accessible, interactive and provocative methods, the momentum of the group’s lobbying for change picked up a pace. In March 2011, two researchers from Clare and the research and communications officer were invited as representatives of the Inclusive Research Network, to consultations with the government’s legislative advisory body, the Law Reform Commission, with regard to reviewing the 1993 Act. This was the first time researchers with an intellectual disability had presented to the Commission. The Commission has since published (Law Reform Commission 2011) a Consultation Paper on Sexual Offences and Capacity to Consent which solicited input from interested parties and proposed the repeal of the act, subject to the introduction of certain safeguards regarding vulnerable adults. Following its meetings with the Law Reform Commission, the Clare Inclusive Research Group prepared a submission to the Consultation Paper outlining their arguments for changing the Act. They particularly raised the following issues: the need to respect their right to a sexual life, the importance of having information about issues which affect them in accessible language, the need for education about sexuality and the importance of being able to form adult relationships when both people were able to consent (Clare Inclusive Research Group, 2011). The repeal or amendment to the provision in the Act has not yet been achieved, but the researchers believe that the Consultation Paper content itself shows the value of the work they have put into researching their
peers’ attitudes and representing their views to the Commission.
Reflection on Sexuality and Relationships in Ireland The work of the Clare Inclusive Research Group demonstrates how research and advocacy can be woven together to promote social change.
What impact does doing research have on the people who are involved in it? The research and action undertaken by the Clare Inclusive Research Group arose from their concerns about barriers that people with intellectual disabilities faced in relation to sexuality and relationships. The research they undertook provided the basis for a creative analysis in the form of theatre in which they were all involved. They have presented their concerns at conferences, have spoken on the media about a previously hidden issue and have engaged in formal consultations with government bodies. From undertaking the research, they came to new knowledge of the Criminal Law Sexual Offences Act and made a group decision to work to change it. The skills of the research and communication officer were important in providing knowledge and support about research and, in particular, finding a way of using it which was accessible to people with intellectual disabilities and in which they became very actively involved.
To what extent can inclusive research impact on policy and practice? Sexuality and relationships are sensitive topics which are often difficult to discuss. The use of drama as a way of directly involving people in a consideration of the issues affecting people with intellectual disabilities provided a creative way of rethinking and potentially changing attitudes and values. The research also provided a way for people with intellectual disabilities to have their voices heard by policy and legislative organizations. The Act in the Republic has not yet been changed, but there is now a significant voice from people with intellectual disabilities informing discussion of how this might happen. The consultations with the Law Reform Commission were the first time people with intellectual disabilities had been invited to present their views. The research which they had carried out provided them with both information and the confidence to speak about it. © 2013 John Wiley & Sons Ltd, 27, 76–84
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When does research shift into being advocacy? How does this happen? Advocacy has been an important part of the development of the work on sexuality and relationships by the Clare Inclusive Research Group. The issue was one of concern to the group, and they sought to gain further information about it through the research that they undertook. Their concern was to use the research findings to work for change. The research that they began on sexuality led them to find out about the Criminal Offences Sexuality Act and then to use their research to try and change it. There is no doubt that now the focus of the group is much more on changing the Act than on undertaking more systematic or larger research about the issues.
What added value does including people with intellectual disabilities as researchers give to the research? The research and the resulting actions by the Clare Inclusive Research Group arose directly from the concerns of people with intellectual disabilities. The research began with their own experiences and developed into research which involved people with intellectual disabilities outside of the group. The use of drama that proved to be an effective means of changing attitudes and drawing attention to the issue by outside organizations was designed to make sure that people with intellectual disabilities could understand and engage with the research issues. The importance of people with intellectual disabilities being part of the research is shown also in the request that they be included in consultations at a government level. Their views are now seen to be integral to change, and their experience and knowledge are being drawn on directly by the Law Reform Commission. As with Living Safer Sexual Lives, this research can be seen as involving a team approach to research. The experience and knowledge of people with intellectual disabilities were fundamental to the development of the research. The skills in research and in theatre provided by the research and communications officer were shared and developed with the group.
Conclusion Inclusive research involves a seeming tension between its processes designed to empower people with intellectual disabilities and the content of the research © 2013 John Wiley & Sons Ltd, 27, 76–84
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itself. In considering the two research studies in this paper, it is apparent that this tension can be transcended. Empowerment through the research process can add to the richness of the research itself and can lead to a strong focus on social change. The two studies considered are very different. Living Safer Sexual Lives was not initiated by people with intellectual disabilities but through their involvement they gained both confidence and strength to speak out both informally and formally about sexual issues. The second study grew directly from the concerns of people with intellectual disabilities. It has led to a campaign to change what is seen as an oppressive law. One of the strengths of both studies was the power of the voices of people with intellectual disabilities when they are heard. Life stories and the development of dramas and the formal presentation of their concerns at government level have in both cases made a contribution to promoting social change. However, both studies also reveal some of the challenges of undertaking research of this kind. Support from both academic researchers and in the case of Ireland, a skilled research and communications officer provided training and methodological input. The involvement of skilled and experienced researchers in both studies supported the research to be both rigorous and exploratory. Inclusive research has been criticized for privileging empowerment over research outcomes; however, both studies received ethical approval from academic institutions, and both sought to gain new knowledge about the experiences of people with intellectual disabilities. Both studies took longer than a traditional academic study as people with intellectual disabilities needed time to develop skills and confidence in both their involvement in the research and its use. In both instances, the movement for change was negotiated with government departments. However, in Ireland, the National Federation of Voluntary Bodies which represents service provider organizations working with people with intellectual disabilities were partners in the research and invited drama presentations at their national conference. In both studies, resources were available for people to participate in dissemination activities. This is not always the case in funded research, but perhaps those seeking funding need to give this more consideration in their applications. Inclusive research can add to our knowledge of others and ourselves. It can provide a means for people to take power in their own lives. It can also be used, as this paper has shown to promote and support change through advocacy.
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Inclusive research where people are researching issues important to them provides one way of directly translating research words into action.
Correspondence Any correspondence should be directed to Professor Kelley Johnson, Norah Fry Research Centre, University of Bristol, 8 Priory Road, Bristol BS8 1TZ, UK (e-mail: [email protected]).
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Centre on Sex, Health and Society Latrobe University, Melbourne. Harrison L., Johnson K., Hillier L. & Strong R. (2002) Nothing about us without us: the ideals and realities of participatory action research with people with an intellectual disability. Scandinavian Journal of Intellectual Disability Research 5, 56–70. Hopkins R. (2009) Making research live! British Journal of Learning Disabilities 37, 330–331. Inclusive Research Network, National Federation of Voluntary Bodies & and National Institute for Intellectual Disability (2009) Where We Live. National Institute for Intellectual Disability, Trinity College, Dublin. Inclusive Research Network, National Federation of Voluntary Bodies & National Institute for Intellectual Disability (2010) Relationships and Supports Study: People with Intellectual Disabilities in Ireland. National Institute for Intellectual Disability Ireland, Trinity College, Dublin. Johnson K., Frawley P., Hillier L. & Harrison L. (2000) Living safer sexual lives. From research to practice. Intellectual Disability 21, 25–28. Johnson K., Hillier L., Harrison L. & Frawley P. (2001) People with Intellectual Disabilities. Living Safer Sexual Lives. Latrobe University, Melbourne. Law Reform Commission (2011) Consultation Paper on Sexual Offences and Capacity to Consent Law. Reform Commission, Dublin. McCarthy M. (1999) Sexuality and Women with Learning Disabilities. Jessica Kingsley Publishers, London. Schechter J. (2003) Popular Theatre: A Sourcebook. Routledge, London. Walmsley J. & Johnson K. (2003) Inclusive Research with People with Learning Disabilities. Past, Present and Futures. Jessica Kingsley Publishers, London. Williams V., Marriott A. & Townsley R. (2008) Shaping Our Future: A Scoping and Consultation Exercise to Establish Research Priorities in Learning Disabilities for the Next Ten Years. Report for the National Co-ordinating Centre for NHS Service Delivery and Organisation R&D (NCCSDO). Norah Fry Research Centre, University of Bristol, Bristol.
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Inclusive Research: Making a Difference to Policy and Legislation Kelley Johnson*, Gerard Minogue† and Rob Hopklins† *Norah Fry Research Centre, University of Bristol, Bristol, UK; †Brothers of Charity, Ennis, County Clare, Ireland
Accepted for publication 22 October 2013
Background While inclusive research has become an important stream in research with people with intellectual disabilities, there is a tension between the possibly empowering research process and the strength of the research itself to make social change happen. In this paper, we explore the contribution of two inclusive qualitative research studies in Australia and the Republic of Ireland to change in policy and legislation. Materials and methods Both studies used qualitative methods including life stories and focus groups to explore the issue of sexuality and relationships. In both studies, people with intellectual disabilities were actively involved in undertaking the research. Results Both studies revealed that it was difficult for people with intellectual disabilities to express their sexuality openly or to form adult relationships. Conclusions Both studies were used by people with intellectual disabilities and their supporters to promote change in which they had a heard voice. Accessible Abstract This paper is about how people with intellectual disabilities and their supporters can use research which they have done to change policies and laws that affect them. When people with intellectual disabilities are doing research it is called inclusive research.We write about two research studies which were about the sexual lives and relationships of people with intellectual disabilities. One research study was in Australia and one was in the Republic of Ireland.In the Australian study, Living Safer Sexual Lives, 25 people with intellectual disabilities told their life stories and talked about sexuality and relationships.In the Irish study people with intellectual disabilities told life stories and talked with other people with intellectual disabilities about their sexuality and relationships in groups. These are called focus groups.In this paper we explore 4 questions that arose from these studies. © 2013 John Wiley & Sons Ltd
Question 1. What impact does doing research have on the people who are involved in it? People with intellectual disabilities in Australia were members of the group that guided the research. They were partners in its design, in deciding what questions should be asked about sexuality and relationships., and thinking about what was found out. They became involved in making films about the study. They learned a lot about research, sexuality and relationships and became members of a government committee to change policy about sexuality and people with disabilities. In Ireland people with intellectual disabilities involved in doing the research talked together about their lives. They then talked with 16 groups of people with intellectual disabilities about their relationships and sexuality. They learned about research and about sexuality and developed plays about their experiences. Question 2. To what extent can inclusive research change policy and practice? In Australia the research led to a change in government policy about sexuality and people with disabilities. The new policy clearly stated people with disabilities had rights to relationships and to a sexual life. It set out rights and responsibilities for people with intellectual disabilities and service providers about relationships and sexuality. It took a long time to get a change in policy and people with intellectual disabilities were part of the getting the change to happen. In Ireland there is a law which says that it is illegal to have some forms of sex with people with intellectual disabilities. From the research people with intellectual disabilities became involved in talking with government about changing this law so that it gives them more rights to a sexual life. The law has not changed yet but the voices of people with intellectual disabilities are now being heard. Question 3 When does research shift into being advocacy? How does this happen? People with 10.1111/jar.12085
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intellectual disabilities in both studies became advocates to get change to happen. Partly this was because they had become more ‘expert’ about sexuality and relationships and the policy and law. They were angry at what they had found out in the research and wanted to get change to happen. Question 4 What added value does including people with intellectual disabilities as researchers give to the
Introduction Research is carried out for many different reasons: because we want to understand our own lives and those of others better, because we want to add to the sum total of our knowledge and because we want to use it to bring about social change (Brechin & Sidell 2000). Inclusive research is research that involves people with intellectual disabilities as active researchers who are ‘instigators of ideas, research designers, interviewers, data analysts, authors, disseminators and users’ (Walmsley & Johnson 2003, p. 10). Such research represents a movement from a research model in which people were ‘subject’ to research to one in which they are accorded respect, are seen as experts in their own lives and can be agents for change. The principles of inclusive research clearly demonstrate this change in approach: 1. That the research problem should be owned (not necessarily initiated) by people with disability. 2. It should further the interests of people with disability; researchers without disability should be on the side of people with [intellectual] disabilities. 1 3. It should be collaborative people with (intellectual) disabilities should be involved in the process of doing the research. 4. People with [intellectual] disabilities should be able to exercise some control over process and outcomes. 5. The research question, process and reports must be accessible to people with [intellectual] disabilities. (Walmsley & Johnson 2003, p. 64) There is a strong emphasis in inclusive research on the empowerment of people with intellectual disabilities who are coresearchers. Empowerment in this context can be seen as increasing power in relation to the resources involved in doing research, information 1 Intellectual has been inserted by the authors in this quote as the book from which it is taken focuses on inclusive research and people with intellectual disabilities but in this quote does not use the term.
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research? People with intellectual disabilities had knowledge and experience that made it possible for the research in both Australia and Ireland to happen. They were important in how the research was done and what was done with it after it was finished. Keywords: inclusive research, intellectual disability, law, policy
gained from the research about the barriers that people with intellectual disabilities experience, changing relationships between those involved in the research and in the capacity of people to advocate for change and in taking decisions on what to do in order for change to happen (Benn 1981; Barnes 2003). However, there is an implicit (and sometimes explicit) tension in inclusive research between the importance of the process of doing the research and the power that people with intellectual disabilities may gain from this and the strength of the research itself to make social change happen. In this paper, we explore how inclusive research may support people with intellectual disabilities to do research about issues important to them and how far it can then contribute to changes in law, policy and practice at a local or national level. The paper draws on two examples of inclusive research about sexuality and relationships and people with intellectual disabilities that were undertaken in Australia and the Republic of Ireland, respectively, and in each of which one of the authors of the current paper was actively involved. Both studies were undertaken because of concerns about the barriers that people with intellectual disabilities faced in expressing their sexuality or in having sexual relationships. However, the legislative and policy context for each was different. In the Republic of Ireland, the Criminal Law (Sexual Offences) Act Ireland (1993) forbids penetrative sex with people with ‘mental impairment’ unless they are married. There are no government policies in relation to sexuality and relationships although some services have developed their own. In Australia, there is no law forbidding sexual relationships (except between service providers and clients) by people with intellectual disabilities. However, the state government policy prior to the research had a strong focus on safeguarding and protection and little focus on rights. Both of the studies used as case studies in this paper have been previously published (Johnson et al. 2000;
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Harrison et al. 2002; Bane et al. 2012). The aim of this paper is to revisit them in terms of four questions arising from the use of two different models of inclusive research: 1. What impact does doing research have on the people who are involved in it? 2. To what extent can inclusive research impact on policy and practice? 3. When does research shift into being advocacy? How does this happen? 4. What added value does including people with intellectual disabilities as researchers give to the research? The need for a consideration of these questions was revealed in the findings from a national study in the UK that sought to establish research priorities in relation to issues important to people with intellectual disabilities. A consultation with academics, people with intellectual disabilities, service providers and families revealed that 5. The six most important areas of concern for people with learning disabilities were access to health care, getting good support, the right to relationships, housing, work and personal finance, inclusion in the community. 6. There is a large volume of academic research in these areas, but people want more research about action, which helps us to understand how to make changes.(Williams et al. 2008, p. 6) The degree to which action can arise from inclusive research is the focus of this paper. The paper was written as ‘inclusively’ as possible within academic constraints. We discussed the ideas for the paper together, shared the writing and worked together on the accessible summary which was written with the author with intellectual disabilities.
Living Safer Sexual Lives Introduction Living Safer Sexual Lives was a three-year action research study about sexuality and relationships that included the voices of people with intellectual disabilities themselves. The research was initiated by a group of academics who had worked with people with intellectual disabilities and who had experience in working on issues about sexuality. They were concerned about the lack of research on this issue which directly involved people with intellectual disabilities, the high levels of sexual abuse and exploitation of this group reported in the literature (McCarthy 1999) and about
their vulnerability to sexually transmissible disease (Johnson et al. 2001).
Materials and methods A preliminary consultation was held with approximately 20 people with intellectual disabilities who were contacted through self-advocacy organizations to check that this was research that they thought was important and which should be undertaken. Support for the research was unanimous in the group. An advisory group consisting of people with intellectual disabilities, service providers and advocates was established. All non-salaried members of the advisory group were paid. The advisory group provided guidance to the researchers about the design of interviews and access to people with intellectual disabilities. Early in the research, the advisory group made a decision that members would not contribute their life stories to the study and that they would not be involved in interviews because of concerns about confidentiality. All advisory group members were directly involved in data analysis and the development of resources that emerged from the research. Ethical approval for the study was obtained from the university ethics committee before the study commenced. In the research, 25 people with intellectual disabilities contributed their life stories which did not separate out sexuality and relationships from the rest of their lives. The life story tellers included men and women, younger and older people and those who had lived in institutions and those who had lived all their lives in the community. It also included people who lived in rural and city areas. At least three interviews were held with each life story teller, their stories were recorded, transcribed, and their life stories were written using their own words. The stories were taken back to each contributor for approval. The stories were analysed with the advisory group. Each story was read aloud several times in small groups and themes arising from the story were identified by the group. Care was taken to ensure that paid counselling was immediately available for life story contributors who were concerned about issues arising from their participation. No one needed to avail themselves of this resource.
Results and discussion The findings from the research revealed that the life story tellers had received little education about sex or © 2013 John Wiley & Sons Ltd, 27, 76–84
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relationships. Often the information they had been given was very negative, had occurred only once or when they were not ready for it. For example, Hussein2 commented in his life story: Nobody told me about me body and AIDS. When you’re young and you get older your body changes and that and your voice. When you have sex with someone, sperm comes out. Whereabouts is it in your body? I didn’t know your body can produce that. Can it?(cited in Johnson et al. 2001 p. 60) The stories revealed people who wanted to have a close relationship with someone else or wanted to express their sexuality freely. So David commented: I’d like to get married some day, but I haven’t met anyone yet. It’s difficult to do that. I used to have high hopes and then that’s been crushed, so I have small dreams. I have lots of small dreams.(cited in Johnson et al. 2001 p. 47) Some people had achieved a positive and safe expression of their sexuality. However, the majority of participants were lonely and only dreamt of having close relationships. Ten of the 13 women had experienced abusive or exploitative sexual relationships, and seven of the 12 men reported some form of abuse. People’s sexual desire, dreams and needs were unique to each person. Often they led sexual lives that were unknown to those about them. People hid their lives because they were very aware that their sexuality was regarded as problematic, or it was actively discouraged or prohibited. This had led some people to be at risk or to have bad experiences. For example, Angela had a partner whom she saw as ‘loving and understanding and caring.’ However, she had to keep her sexual life hidden from her parents: I ‘ve never talked about it at home, mum’d have a fit (cited in Johnson et al. 2001 p. 58) The outcomes of the research included the development of workshops for people with intellectual disabilities, families and service providers (Frawley et al. 2003), the production of three short films of the stories narrated by members of the advisory group, and the research led to a change in government policy.
Living Safer Sexual Lives: Reflecting on the Study In relation to the four questions posed earlier in this paper, the study provided evidence to support the view that inclusive research can have a direct effect on policies.
What impact does doing research have on the people who are involved in it? The research profoundly challenged the ideas and beliefs of the researchers and members of the advisory group. It took time for people with intellectual disabilities to feel confident in discussing a topic that had been frequently labelled as ‘private’ and not for public discussion. However, during the research, they became active members of the research team. They were involved in designing the best ways to access possible contributors, solving ethical problems, the development of interview questions, analysing the life stories, speaking about the study to the media, and they took part in developing resources for the workshops. Two of the self-advocates became members of the committee established to change government policies. However, in this research, people with intellectual disabilities were not involved in contributing to, or collecting the life story interviews nor were they cofacilitators in the workshops that resulted from them. More recently, a new project, Living Safer Sexual Lives: Respectful Relationships (Frawley et al. 2010) which was directly related to the earlier research has involved people with intellectual disabilities as facilitators in workshops on sexuality. The research also affected the attitudes of advocates and service providers who were on the advisory group. It was as a direct result of this involvement that the Office of the Public Advocate3 lobbied the government for a change in sexuality policies in the state. Living Safer Sexual Lives was a team project which focused on the advisory group. The researchers contributed their knowledge of sexuality and relationships and research methodology. The people with intellectual disabilities contributed their lived experience, their knowledge of the best ways to undertake research on a sensitive topic and their
3
2
All names of people have been changed.
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The Office of the Public Advocate is an independent statutory body which works to protect and promote the interests, rights and dignity of people with a disability.
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advocacy skills. The advocates became key players in ensuring that change happened as a result of the research.
To what extent can inclusive research impact on policy and practice? The research was used by organizations that had been part of the advisory group to lobby government for a change to the existing policy in relation to people with disability and sexuality. This did not happen easily, but the research evidence was compelling because it consisted of direct accounts of people’s lives. The importance of having powerful people on the advisory group was brought home to the research team when the Office of the Public Advocate began to have meetings with government representatives. The result of these meetings was the establishment of a committee that included researchers and people with intellectual disabilities from the advisory group. The task of the group was to advise on drafting a new policy for the state government in relation to sexuality and relationships and people with disabilities.4 The committee met over a period of 2 years. It was not an easy task to draft a new policy. Drafts went through a number of different filtering systems including the legal department of the government department. While the resulting policy was not ideal, it did have the following features: 1. It did not treat sexuality and relationships as problems but saw them as a ‘normal part of the lives of people. 2. It took account of the need for safety and for rights, acknowledging the importance of both of these issues. 3. It was based on a rights and responsibilities approach and makes these clear for people with disability and for those who work with them (Disability Services, 2006).
When does research shift into being advocacy? How does this happen? Self-advocacy groups were part of the research from the beginning with representatives sitting on the advisory group. Involvement in the research led gradually to an increasing knowledge of the issues affecting people with
4
The government policy included all people with disabilities not only those with intellectual disabilities.
intellectual disabilities by those on the advisory group. This led to members of the advisory group becoming strong advocates for change. However, formal advocacy in relation to the issues of sexuality and relationships really began after the research itself was finished. The funding body had provided money for developing resources and activities that emerged from the research findings. Self-advocates became part of the committee developing a new policy on sexuality and relationships. They also played a role with other organizations in writing letters of support for the development of a new policy when legal concerns about it were raised by the government department.
What added value does including people with intellectual disabilities as researchers give to the research? The involvement of people with intellectual disabilities was central to the development of the research and its success in achieving change. The self-advocates on the advisory group contributed their knowledge and skills in developing the research. Their awareness of the difficulties of speaking about sexuality and the barriers that people with intellectual disabilities experienced in this area of their lives contributed to the sensitivity and the safeguards that were built into the study. They contributed to the development of the themes arising from the stories. Their growing confidence in discussing the issues led them to be strong public speakers for change resulting from it. Without their contribution, it is doubtful whether the research could have been completed successfully or could have led to a change in policy.
Sexuality and Relationships in the Republic of Ireland Introduction The second study focuses on inclusive research that has led to efforts by people with intellectual disabilities and their supporters to change the law in Ireland in relation to sexuality and relationships. The Criminal Law (Sexual Offences) Act Ireland (1993) in the Republic of Ireland makes it a criminal offence to have penetrative sex with a person with ‘mental impairment’ unless they are married. Within the Act, mental impairment means a person ‘suffering from a disorder of the mind, whether through mental handicap or mental illness which is of such a nature or degree as to render a person incapable of living © 2013 John Wiley & Sons Ltd, 27, 76–84
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an independent life or of guarding against serious exploitation’ (Criminal Law (Sexual Offences) Act Ireland 1993. Section 5: Article 5). The possible punishments for the offence include lengthy jail sentences. While the Act sought to protect people with intellectual disabilities from exploitation and abuse it fails, ‘to provide sufficient clarity that it recognizes the rights of persons with intellectual disability or limited capacity to have a fully -expressed consensual sexual life.’ (Law Reform Commission 2011, p. 14). While nobody has ever been charged under this Act, it has had a profound effect on the way sexuality and relationships are seen by service providers working with people with intellectual disabilities in Ireland, as any support they may give to people in relation to the development of sexual relationships could be seen as collusion in breaking the law. The need to change the law has become an important part of the work of an inclusive research group in Ireland. The Clare Inclusive Research Group was formed in 2008 by the Brothers of Charity, an organization providing services for people with intellectual disabilities. The group consists of ten people with intellectual disabilities who use the service and a research and communications officer, who is funded on a three day a week basis. In addition to undertaking its own research projects, the group is part of a national network of inclusive research that is jointly auspiced by the National Federation of Voluntary Bodies and the National Institute of Intellectual Disability at Trinity College. It therefore has strong links with both a national service provider organization and academia. Over the past 4 years, the group has undertaken research on housing, relationships and transport issues (Inclusive Research Network, National Federation of Voluntary Bodies & National Institute for Intellectual Disability 2009, 2010).
Materials and methods The Clare Inclusive Research Group expressed an interest in issues around relationships and sexuality as one of their research priorities. The members began by sharing life stories and talking with other people with intellectual disabilities about their experiences. They became involved as researchers in a study by the national inclusive research network on relationships and support (Inclusive Research Network, National Federation of Voluntary Bodies & National Institute for Intellectual Disability 2010). In this research, the Clare Group gained training in research and cofacilitated © 2013 John Wiley & Sons Ltd, 27, 76–84
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sixteen focus groups with people with intellectual disabilities around Ireland. Ethical approval for this research was obtained through the relevant university ethics committee.
Results and discussion Thematic analysis was used to identify key themes arising from the research. The Clare Inclusive Research Group was involved in discussions about the themes. The findings, while not specifically focusing on sexuality, revealed that participants wanted a ‘girl friend’ or ‘boyfriend’ and support from service providers and families when they did this. They felt that they were ‘often treated like children over boyfriends and girlfriends’ (Inclusive Research Network, National Federation of Voluntary Bodies & National Institute for Intellectual Disability 2010, p. 2). Using the research findings they had gathered in their own discussions and from the wider research, the Clare Group developed a drama called ‘No Kissing,’ which was first performed at the annual general meeting of the Irish Sex Education Network, (now known as the Connect People Network) a peer support group of people with intellectual disabilities who meet in Dublin. Later, using information and reflections generated through meetings with this support group the Clare researchers devised a further drama called ‘Leaving Home’. This play was first presented in Clare as a piece of Forum Theatre (Boal 1982) and then at two national conferences. Forum Theatre creates a socially oppressive situation staged to induce empathy in the audience who are actively encouraged to intervene and suggest or come on stage and enact solutions to the dilemma that has been played out. It ‘asks its audience questions and expects answers.’ (Schechter 2003, p. 266). The research and communication officer was trained in Forum Theatre and discussed it with the research group as a possible way of disseminating their research. The use of drama brought the group to the notice of the media, and two researchers were called to participate on a discussion panel about intellectual disability and sex education on a national radio programme alongside an advocate representative and the parent of a young woman with a learning disability. As a result of the research, the drama and media appearances, the issue of the prohibition under Irish law of penetrative sexual activity with a person with intellectual disabilities was first discussed in the group.
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They had not known about this Act and responded to its provisions with anger and outrage: Why are we being singled out for special treatment with secret special laws that do not reflect our opinions and have the effect of creating a barrier to our acceptance and inclusion? Staff and families knew about this law but we were never told.(Clare Inclusive Research Group, 2011) The group wanted to find out why the law existed and they wanted to campaign for it to be repealed. One group member raised the question: Can we talk to people about it? And ask people why?(Hopkins 2009) As the Clare researchers grew in confidence through participating in research training, carrying out research and disseminating its findings to their peers and the broader community through accessible, interactive and provocative methods, the momentum of the group’s lobbying for change picked up a pace. In March 2011, two researchers from Clare and the research and communications officer were invited as representatives of the Inclusive Research Network, to consultations with the government’s legislative advisory body, the Law Reform Commission, with regard to reviewing the 1993 Act. This was the first time researchers with an intellectual disability had presented to the Commission. The Commission has since published (Law Reform Commission 2011) a Consultation Paper on Sexual Offences and Capacity to Consent which solicited input from interested parties and proposed the repeal of the act, subject to the introduction of certain safeguards regarding vulnerable adults. Following its meetings with the Law Reform Commission, the Clare Inclusive Research Group prepared a submission to the Consultation Paper outlining their arguments for changing the Act. They particularly raised the following issues: the need to respect their right to a sexual life, the importance of having information about issues which affect them in accessible language, the need for education about sexuality and the importance of being able to form adult relationships when both people were able to consent (Clare Inclusive Research Group, 2011). The repeal or amendment to the provision in the Act has not yet been achieved, but the researchers believe that the Consultation Paper content itself shows the value of the work they have put into researching their
peers’ attitudes and representing their views to the Commission.
Reflection on Sexuality and Relationships in Ireland The work of the Clare Inclusive Research Group demonstrates how research and advocacy can be woven together to promote social change.
What impact does doing research have on the people who are involved in it? The research and action undertaken by the Clare Inclusive Research Group arose from their concerns about barriers that people with intellectual disabilities faced in relation to sexuality and relationships. The research they undertook provided the basis for a creative analysis in the form of theatre in which they were all involved. They have presented their concerns at conferences, have spoken on the media about a previously hidden issue and have engaged in formal consultations with government bodies. From undertaking the research, they came to new knowledge of the Criminal Law Sexual Offences Act and made a group decision to work to change it. The skills of the research and communication officer were important in providing knowledge and support about research and, in particular, finding a way of using it which was accessible to people with intellectual disabilities and in which they became very actively involved.
To what extent can inclusive research impact on policy and practice? Sexuality and relationships are sensitive topics which are often difficult to discuss. The use of drama as a way of directly involving people in a consideration of the issues affecting people with intellectual disabilities provided a creative way of rethinking and potentially changing attitudes and values. The research also provided a way for people with intellectual disabilities to have their voices heard by policy and legislative organizations. The Act in the Republic has not yet been changed, but there is now a significant voice from people with intellectual disabilities informing discussion of how this might happen. The consultations with the Law Reform Commission were the first time people with intellectual disabilities had been invited to present their views. The research which they had carried out provided them with both information and the confidence to speak about it. © 2013 John Wiley & Sons Ltd, 27, 76–84
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When does research shift into being advocacy? How does this happen? Advocacy has been an important part of the development of the work on sexuality and relationships by the Clare Inclusive Research Group. The issue was one of concern to the group, and they sought to gain further information about it through the research that they undertook. Their concern was to use the research findings to work for change. The research that they began on sexuality led them to find out about the Criminal Offences Sexuality Act and then to use their research to try and change it. There is no doubt that now the focus of the group is much more on changing the Act than on undertaking more systematic or larger research about the issues.
What added value does including people with intellectual disabilities as researchers give to the research? The research and the resulting actions by the Clare Inclusive Research Group arose directly from the concerns of people with intellectual disabilities. The research began with their own experiences and developed into research which involved people with intellectual disabilities outside of the group. The use of drama that proved to be an effective means of changing attitudes and drawing attention to the issue by outside organizations was designed to make sure that people with intellectual disabilities could understand and engage with the research issues. The importance of people with intellectual disabilities being part of the research is shown also in the request that they be included in consultations at a government level. Their views are now seen to be integral to change, and their experience and knowledge are being drawn on directly by the Law Reform Commission. As with Living Safer Sexual Lives, this research can be seen as involving a team approach to research. The experience and knowledge of people with intellectual disabilities were fundamental to the development of the research. The skills in research and in theatre provided by the research and communications officer were shared and developed with the group.
Conclusion Inclusive research involves a seeming tension between its processes designed to empower people with intellectual disabilities and the content of the research © 2013 John Wiley & Sons Ltd, 27, 76–84
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itself. In considering the two research studies in this paper, it is apparent that this tension can be transcended. Empowerment through the research process can add to the richness of the research itself and can lead to a strong focus on social change. The two studies considered are very different. Living Safer Sexual Lives was not initiated by people with intellectual disabilities but through their involvement they gained both confidence and strength to speak out both informally and formally about sexual issues. The second study grew directly from the concerns of people with intellectual disabilities. It has led to a campaign to change what is seen as an oppressive law. One of the strengths of both studies was the power of the voices of people with intellectual disabilities when they are heard. Life stories and the development of dramas and the formal presentation of their concerns at government level have in both cases made a contribution to promoting social change. However, both studies also reveal some of the challenges of undertaking research of this kind. Support from both academic researchers and in the case of Ireland, a skilled research and communications officer provided training and methodological input. The involvement of skilled and experienced researchers in both studies supported the research to be both rigorous and exploratory. Inclusive research has been criticized for privileging empowerment over research outcomes; however, both studies received ethical approval from academic institutions, and both sought to gain new knowledge about the experiences of people with intellectual disabilities. Both studies took longer than a traditional academic study as people with intellectual disabilities needed time to develop skills and confidence in both their involvement in the research and its use. In both instances, the movement for change was negotiated with government departments. However, in Ireland, the National Federation of Voluntary Bodies which represents service provider organizations working with people with intellectual disabilities were partners in the research and invited drama presentations at their national conference. In both studies, resources were available for people to participate in dissemination activities. This is not always the case in funded research, but perhaps those seeking funding need to give this more consideration in their applications. Inclusive research can add to our knowledge of others and ourselves. It can provide a means for people to take power in their own lives. It can also be used, as this paper has shown to promote and support change through advocacy.
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Inclusive research where people are researching issues important to them provides one way of directly translating research words into action.
Correspondence Any correspondence should be directed to Professor Kelley Johnson, Norah Fry Research Centre, University of Bristol, 8 Priory Road, Bristol BS8 1TZ, UK (e-mail: [email protected]).
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