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Inclusive RESEARCH

(Warning, there are more capitalised words in this BLOG than I think I’ve ever put into anything before!)

In my first blog post I told you that I had recently taken up a position, funded by the South Coast Doctoral Training Partnership, as a doctoral researcher studying identity and belonging for people with profound intellectual and multiple disabilities, and that I was feeling more than a little daunted by the challenge this entails. Within the stipulation of my funding is a sentence stating that I will be expected to do research “with people with profound intellectual and multiple disabilities”.

It is likely that whoever wrote this statement simply meant that the work needed to be about people with profound intellectual and multiple disabilities, but over the first year of doing the PhD I became very interested in that ‘with’.

We used to do research ON people with disabilities, quite literally on them in the way that we might test things on mice or rats.

In time the cruelty of this was recognised and we moved from doing research ON people with disabilities to doing it FOR them.

At first this was not much of a move, it was simply that we could justify research done ON people with disabilities if it was also FOR them, so for example we might have tested medication intended to treat them, on them, justifying it as for them. But the FOR developed, and the disability rights movement’s championing of ‘Nothing about us without us’ led to the next shift in inclusive research: WITH. Researchers no longer did research ON, or even FOR people with disabilities, instead they sought to collaborate with people with disabilities.

People with disabilities were a part of deciding what research would be done, they played active roles in conducting the research, analysing the results and disseminating findings. Now you even see work done BY people with learning disabilities – the research is wholly led by people with disabilities who then employ professional researchers to do the parts of the work they are unable to do themselves.

The progression of inclusive research has been fantastic, but are you sensing a but?

The narrative is not so simple as things just continuing to get better, because progress is always effected by pragmatic considerations.

To happen, research needs funding.

The people with the money have to decide who to hand it out to.

As respect for inclusive research grew some funders decided that if research was to be done about people with disabilities that they would only fund it if it was done in an inclusive manner: hurrah!

“Where is the 'but' Jo?” I hear you ask.

In order to offer funding specifically for inclusive research inclusive research needed defining. Those funders need a list to check to establish whether the work is going to be inclusive. And as these lists were developed they often EXCLUDED people with profound intellectual and multiple disabilities.

The lists said things like: to be considered inclusive all members of the research team must be involved in the writing up of the research, or in the examination of the data, or all must give consent to take part.

Currently inclusive research stands at risk of being defined as research that includes people with mild to moderate learning disabilities but excludes people with profound intellectual and multiple disabilities, so I am really interested in finding ways to work WITH people with profound intellectual and multiple disabilities to do research.

My intent with my PhD is that I will do research into Identity WITH people with profound intellectual and multiple disabilities.

By that WITH I do not simply mean they will be around and that I will be with them as I do the research, I mean we will do the research together. I imagine you can immediately appreciate the barriers I might face: how is that possible, how can people with profound intellectual disabilities do something that is essentially an intellectual pursuit?

I think I face an If-the-mountain-won’t-come-to-Mohammed type of a choice: either I can try and find ways to get people with profound intellectual and multiple disabilities to do things we currently recognise as research, or I can try and find ways to get people to reconceptualise research such that it is a space in which people recognise the belonging of people with profound intellectual and multiple disabilities as capable.

And in case you had not guessed, it is this latter option I am going for.

All this might seem a bit esoteric, the navel gazings of a philosophy graduate, which is why in my next blog I will look at why it matters.

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