Second waves and new futures

by Liz Ellis

(All views in this post are the author’s and do not represent SHLD nor The Open Unviersity.)

This post in made in response to some of the issues that arose from one of the planning meetings for the next SHLD conference and also draws on some of the discussion from my final PhD chapter and a recent ESRC seminar series. During the SHLD meeting there was discussion about the conference theme and as we talked, we discussed how relevant historically based research was for people with learning difficulties today. This in turn led us to question what SHLD stands for and what it will look like in the future.

For me personally SHLD is closely bound up with inclusive research. My first academic conference was at SHLD and it was the first time I fully understood exactly what inclusive research was and how it worked. Since then I have used inclusive research (with varying degrees of success it must be said) in approaching my post grad and doctorate research. In starting my PhD research it became clear to me that things were changing and this was underpinned by the ESRC seminar series on inclusive research headed by Jane Seale. To explain the changes, I need to go back a little and talk about the early forms of inclusive research in terms of where it was done, what the outputs focussed on and the kind of co-researcher* involved.

Sites of research

SHLD is perhaps best known for the work around gathering the oral histories of people with learning difficulties who had previously been institutionalised. There was a recognition that as deinstitutionalisation gathered pace, the first hand accounts of life in institutions would be lost forever. These narratives, in creating a record of life from the inmates’ perspectives, preserved the history of a hidden section of society which was slowly being lost as the large institutions and colonies closed down. The effect of deinstitutionalisation from these large-scale, long-stay institutions resulted in the proliferation of smaller scale day services and group homes. This also coincided with (and IR supported?) the rise of the self-advocacy movement.

Thus inclusive research sites included day centres (as in my Masters degree) and more latterly, as people with learning difficulties moved out of the institutions and into the community, self-advocacy organisations for people with learning difficulties. The unifying factor in all these sites is that they are places where people with learning difficulties were grouped together, either involuntarily as in the case of the long stay institutions, or as sites of emancipation and activism as in the case of the numerous self advocacy and research projects carried out either with or by People First groups. In essence, the system of institutional care and self-advocacy created ‘ready-made’ samples of potential respondents for researchers wanting to work with people with learning difficulties.

‘Typical’ co-researchers

Following on from this, most people with learning difficulties involved in inclusive research tended to have had or continued to have institutional modes of living. They also tended to have mild or moderate learning difficulties and could use speech. In institutionally set inclusive research, the visit from the ‘university lady’ (as I was called during my Masters research) was the high point of the week. A common assumption about participants with learning difficulties in inclusive research is that they lead socially empty and meaningless lives. Dorothy Atkinson has described in detail the difficulties for academic researchers in breaking away from inclusive research projects and how researching with people with learning difficulties can lead to strong relationships developing over time.

Outputs

Twenty years ago an inclusive research project’s outcomes were frequently (but not exclusively) focused on the research process. The reasons for this were principally the need to justify using such a radical form of research and the political and emancipatory potential of using inclusive research. By clearly positioning the ethical and epistemological advantages to inclusive research (see for example Walmsley & Johnson 2003 and Garcia Iriarte et al. 2014) by transparent and reflective discussion, it is fair to say that inclusive research has now become an established research form.

This acceptance of inclusive research as a ‘valid’ research tool has been reflected in the way outputs from inclusive research has shifted from process to outcomes. It was during the last ESRC seminar that a delegate suggested that we might be in a ‘second wave’ of inclusive research. This point was emphasised by Mel Nind, who discussed the shift from process to product as being indicative of the next generation in inclusive research. This emphasis on the ontological rather than the epistemological is an important sign that inclusive research has matured. We are maybe at the point that we no longer worry about how ‘reliable’ and ‘valid’ the experiences of people with learning difficulties are, but fully accept those realities without them being diminished because of the supposed competency of the person.

New waves?

This shift or ‘second wave’ has been largely driven by changes at a societal level. Following deinstitutionalisation, many younger people with learning difficulties who might become involved in inclusive research have never experienced the same structural isolation. In my research this was highlighted at the first ESRC seminar in January 2013. Natasha, one of the co-researchers on the project, took a dim view of the assumption that I was or would become a central part of her life and would consequently experience feelings of loss at the close of the project. The reality of our relationship during the research process was that I was deeply grateful to her and the others for actually bothering to give me their time at all as all the co-researchers involved had busy and active social lives. This notion of people with learning difficulties as socially dependent and in danger of developing emotional attachment to professional/academic researchers is also reflected in the ethics process where ‘exit strategies’ must be outlined if researching with ‘vulnerable’ groups. This is no bad thing as many people involved in research, particularly oral history research, do, as Atkinson attests, develop intensive and deep relationships. However, for people with learning difficulties involved in more recent research such as mine, a visit from the ‘university lady’ is no longer the high point in the daily tedium of a residential institution or uninspiring day centre. Whilst the closure of such spaces has had some unintended negative consequences, including it has to be said making it easier for the inclusive researcher to locate potential co-researchers, it has also meant that many people with learning difficulties were no longer physically marginalised by being shut away.

However, the flourishing of self-advocacy groups in the wake of deinstitutionalisation is also under threat as groups struggle to attract funding. The restructuring of disability related benefits and services due to swingeing government cuts has resulted in people with learning difficulties leading increasingly atomised lives. For researchers, this diaspora of people with learning difficulties has essentially created an extremely hard to reach population to draw on for inclusive research. Liz Tilly (http://www.building-bridges-training.org) has documented some of the consequences of this with a group of co-researchers and self advocates who have now lost eligibility to support services.

So where next?

Challenges for future inclusive research will inevitably centre on who will be able to participate. The co-researcher who is articulate, verbal and often involved in self-advocacy, is going to increasingly become part of a hidden and hard to reach population. Researchers working inclusively might need to be directing their efforts on groups hitherto excluded from inclusive research such as those with severe and profound learning difficulties as well as a more general expansion in fields outside disability studies. It might therefore behove us to focus on the increasing number of marginalised poor people which will include those currently labelled as having mild or moderate learning difficulties and other disabled people who are considered to be not sufficiently impaired to receive specific disability benefits.

Whether this shift will close down avenues of inclusive research taking an historical perspective is another matter. The current government policy to reduce the size of the state is going to create significant social change whichever way the dice fall. As such inclusive research helping people to record their life stories will produce a record of events and perhaps, as well as producing valuable outputs, the process itself might have the same emancipatory potential as the first time around.

* I am using the term co-researcher to define any non-academic or professional engaging in the research process in whatever capacity.

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