In Sweden, recently several important issues in the disability area have been highlighted in media. Examples of such issues are municipalities failing to provide care for disabled people (Radio Sweden, 2011). Recently, the media reported on the protests against cutbacks in care; “Swedes protest cutbacks in personal assistance budget” (TT/The Local, 2016). A new report from the National Board of Health and Welfare in Sweden shows increased need for support of persons with disabilities (The National Board of Health and Welfare, 2017).
The changes taking place in society must also be observed and studied within the scientific community. The need for disability research and will in our opinion be increasingly important.
In several countries, there are experiences of user involvement, inclusive research, participatory research or partnership in research. There are many names of partnerships when people with disabilities and chronic illnesses are involved in research projects with scientists.
But how does this work in practice? We believe that there are reasons explore what the benefits and challenges of such cooperation are for all actors involved. We also believe that it is important to find out the importance of inclusive research for the development of a nations social policy and the development of human rights.
We would argue that the walls and barriers between various vocational professions, disability researchers and representatives from the disability movements and patient organizations are far too high.
Our assumption that it is a shared responsibility between disability researchers and the disability movement to find out how these partnerships work, and together collaborate to develop future research initiatives. We believe it is urgent to conduct a critical review and evaluations of user participation in national as well as international research.
There are good reasons to develop research methods and research ethics in inclusive research. Much is at stake, both researchers and disability movement could develop extensive cooperation. This has been emphasized in Sweden by the Disability Federation (The Swedish Disability Federation and The Swedish Association of Hard of Hearing People) and scientists such as Peter Anderberg (Wermeling and Nydahl, 2011). Likewise, should the research funding in the future to take greater responsibility to monitor the research projects and the effects this has on both in short and long term.
Shared Voices in the Media
We have examined the voices that are heard media coverage of disability issues in Sweden between 1997-2015 and notes that researchers’ voices are strong while the disability movement are not expressed (Larsson et al, 2016). They are not reflected in the opinion forming material. We therefore invite to debate about the possibilities and the positive benefits of inclusive research. A classic in the field and should serve as a beacon for user participation in research are James Charlton’s book ”Nothing about us without us. Disability oppression and empowerment”, which was published almost twenty years ago (Charlton, 1998). Another important contemporary document urgent user participation is WHO’s World Report on Disability which was published a few years ago (World Health Organization and the World Bank, 2011).
Social Policy, Human Rights and Disability Research
In Sweden, disability research and its contents are discussed in recent years (Lindberg, 2015). The report “The State of Swedish disability research” found that the disability movement itself must be more critical of disability research content and direction. The report states: “For researchers, it is easier to get money if you have conducted similar research in the past and had time to build up what is considered to be scientific quality. Allocation system makes it difficult to break new ground. It’s difficult to do research on new areas without having accumulated theories and methods” (p. 3 Lindberg, 2015). What are the consequences does stagnant disability research have on a country’s social policy and human rights? In our view the trend is worrying. Neither do we know the effects of disability research or how inclusive research can be developed in the future. Therefore we request research data of how many scientists there are in Sweden and in other countries with different disabilities who are active as researchers or PhD-students in any discipline. Therefore a needed proper analysis of the role and importance of disability research are needed.
In a Swedish report several suggestions are put forward. One of the proposals is the need for more researchers with disabilities: “More researchers with Disabilities: A project to support and inspire young graduates with disabilities to research should be started jointly by the disability movement” (p.74 Lindberg, 2015).
We argue that both the disability movement and academia together have a responsibility to work for a change. We propose the establishment of an independent international group of experts consisting of scientists with and without disabilities, as well as representatives of the international disability movement to analyse the quality of disability research.
By:
Håkan Högberg, President of the Organization for People with Impaired Mobility (DHR) in Gothenburg, Sweden. E-mail: hakan.hogberg@dhr.se
Per Olof Larsson, Retiered Lecturer and Filosofie Licentiate in Social Work, Department of Social Work, University of Gothenburg, Gothenburg, Sweden. E-mail: E-post: per-olof.larsson@socwork.gu.se
Jörgen Lundälv, Senior Lecturer and Associate Professor in Social Work, Department of Social Work, University of Gothenburg, Sweden. Jörgen Lundälv is also Associate Professor in Traffic Medicine, Department of Surgical and Perioperative Science, Umeå University, Umeå, Sweden. E-mail: jorgen.lundalv@socwork.gu.se
References
Charlton, J I. (1998). Nothing about us whithout us. Disability Oppression and Empowerment. Berkeley: University of California Press.
Hörselskadades Riksförbund. (2015). Så mår svensk funktionshinderforskning (The State of Swedish disability research). Stockholm: Hörselskadades Riksförbund (The Swedish Association of Hard of Hearing People).
Larsson, P O, Högberg, H, Lundälv, J. (2016). Etik, funktionshinder och medaktörskap i media (Ethics, disability and inclusive research in media). Socialmedicinsk Tidskrift 2016;93:6:677-685 (In Swedish).
Lindberg, L. (2015). Svensk forskning om funktionshinder. Forskningen som haltar (Swedish disability research. The research is limping). Stockholm: Hörselskadades Riksförbund (The Swedish Association of Hard of Hearing People).
Peuravaara, K. (2015). Reflections on collaborative research: to what extent and on whose terms? Scandinvavian Journal of Disability Research 2015;17:3:272-283.
Priestley, MB, Waddington, L, & Bessozi, C. (2010). Towards an agenda for disability research in Europe: learning from disabled people’s organisations. Disability & Society 25:731-746.
Radio Sweden. (2011). Municipalities fail to provide care for disabled. News report Radio Sweden May 4. http://sverigesradio.se/sida/artikel.aspx?programid=2054&artikel=4486934
Socialstyrelsen. (2017). Insatser och stöd till personer med funktionsnedsättning. Lägesrapport 2017 (Efforts and support to people with disabilities. Progress Report 2017). Stockholm: Socialstyrelsen (The National Board of Health and Welfare).
TT/The Local. (2016). Swedes protest cutbacks in personal assistance budget. TT/The Local. December 3. http://www.thelocal.se/20161203/swedes-protest-cutbacks-in-personal-assistance-budget
Wermeling, E, Nydahl, E. (2011). Från forskningsobjekt till medaktör. Om samarbete mellan forskare och dem forskningen berör (From the research object to co-actor. About cooperation between researchers and those research deals). Sundbyberg: Handikappförbunden (The Sweidsh Disability Federation), (In Swedish).
World Health Organization, The World Bank. (2011). World Report on Disability. Geneva: World Health Organization, The World Bank.
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