Tuesday, 20 May 2014

Mirror, mirror on the wall

Mirror, mirror on the wall
I’m going to try and keep this blogpost relatively short (for me), because as you’ll see if you read on, it’s navel-gazing self-indulgence of the worst order. So please feel free to save yourself some time, stop here, and enjoy this youtube clip of the Marx Brothers doing the mirror scene in Duck Soup.

As part of the day that Hannah Morgan and I put on for the #justiceforLB #107days campaign (http://107daysofaction.wordpress.com/2014/05/07/day-49-an-academic-point-107days/ ), one of the things I said was that academics need to take a long, hard look in the mirror. It’s the kind of thing I say – sounds good doesn’t it, appropriately breast-beating (so you’ll think I’m a nice guy, on the side of good, and you can reassure me that of course the work I’m doing is worthwhile) yet sufficiently vague to not really hold me to anything. I’m good at saying (or more often writing) things like that – I can excoriate along with the best of them, and academics largely survive and thrive occupationally on words (and in my case numbers, lots of numbers, BIG numbers, with graphs and statistics and all sorts). An appropriately uncomfortable place to be when action not words is and should be the rallying cry.

One of the things that the #justiceforLB #107days campaign has retaught me, with great force, is the miasma of self-interest that feeds on the lives of people with learning disabilities and their families. Follow the money! Cui bono - who stands to gain? (chuck in a bit of Latin there, because it sounds learned, even though I never did Latin at school, which I’m now mentioning so you don’t think I’m posh). And of course, following the money, academics like me gain financially, occupationally, and in terms of status – and we do so while telling ourselves that what we’re doing is on the side of right and ‘helps’ people with learning disabilities and their families. And I, for one, can lead a life as disconnected from the reality of the lives of people with learning disabilities and their families as any shiny chief executive.

On rare occasions a person with learning disabilities or a family member has quite rightly challenged me about what I do – has the research I’ve been involved in really made a difference, and couldn’t all the money spent on the research I do be better invested directly supporting people and families? And to be blunt, I don’t really have an answer to this challenge that really convinces me, which makes it difficult to come up with a convincing answer for anyone else. I can blether on about raising awareness, helping government to change policy, helping to improve the ‘evidence base’, influencing the discourse, working with services etc until the cows come home. I don’t know if any of this is really true, and how it could be weighed in the balance against all the money that’s been spent on me and the cumulative cost of the research grants I’ve done.

Of course, part of me writing this blogpost is to show you what a nice, tortured soul I am, and I’d like nothing better than to receive oodles of reassurance that what I do does make a difference to people with learning disabilities and families. But if you’re still reading, this reassurance would 1) be a really bad idea (let’s all pat ourselves on the back and reassure each other we’re doing fine – the sparkly Spirograph of shame strikes again), but much, much more importantly 2) not what I’d like to have a conversation about.

If you are still reading and minded to respond in any way, the questions I’m really interested in hearing your take on are as follows:

1) What, if any, types of research/evidence (whatever research/evidence means…) make any sort of positive difference to the lives of people with learning disabilities and their families?

2) If there is the prospect of research/evidence having a positive impact (whatever that means…), how should it be done and how would we know that it has an impact?

3) What, if anything, can academics do (not just in terms of research) to actively support people with learning disabilities and their families?

I don’t have an answer to any of these questions, although I will say I think it’s more than an issue of translating/transferring research/evidence into places where it can be ‘used’. If you want to share your thoughts that would be great (but more words???) – if you want to switch off your device and go and do something less boring instead, then that’s great too (insert obscure kids TV reference to lighten the mood at the end). At the very least, hope you enjoyed the Marx Brothers clip.