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.


  1. Really thought-provoking points Chris!

    My two cents:

    1) Research that documents people's struggles to change the system - grassroots social movements, family collectives and self advocacy, but only if it involves bringing people together to share their experiences and learn from each other, and then documents that learning so that others can benefit from it.

    2) This kind of work has to be designed of and carried out jointly with coalitions of disabled people and families - or led primarily by disabled people and families rather than by researchers. I'm always sceptical of measuring 'impact' - and I think the only way we know if something's worked is if the people involved and people who've found out about it, think it's been helpful to them - we can't ever really prove or measure impact in the broader sense.

    3) Be open. Listen. Don't just ignore people who cold-call you because they found your name online somewhere and want to tell you their story. Connect people to others in the community. Give up our place at the policy table to organisations directly run and controlled by families and disabled people - or only agree to be involved in 'consultations' where they are inclusive and respect the lived experiences of disabled people and families.

  2. Making a difference is a tough one and very difficult to assess in any way. we know it can take 10-20 years or more for research to influence policy/practice. Sometimes, the issue then is not with the research but with how the whole LD community (researchers, people with LD, families, organisations) works together to use that research evidence to good effect. I'd suggest if that doesn't happen it is a joint failure. No getting out of academics' responsibility for that, but also it isn't a lone failure.

  3. This comment is from PSG SpeakUp...

    Chris thanks for this. We have some questions and comments to add.....Why is so much research done ON learning disabled people and not BY and/or WITH learning disabled people? We are learning disabled researchers and we would like to do more researching if we had the chance. We enjoy this work and we learn a lot and hope others learn from us. We think we are helping other learning disabled people too. Why isn't our expertise by experience valued in the research field and in society as a whole?
    There is some research we cannot do but why can't learning disabled people have more say in the control of that research?...and not just in a tokenistic way - real control and input with the necessary independent support to help them to do it? This would cost a lot but if it's uncertain whether more traditional research methods are working doesn't it seem worth trying?
    PSG Self-advocates, Learning Disability Studies, University of Manchester

  4. This comment is from Kath...

    Hi Chris

    My very small contribution as the mum of a dude who is 14.

    I think that in addition to the translational aspects of research into practice, there is something about leadership & governance in larger organisations.

    Large (private, public & non profit) organisations have to work very hard to set the right tone, to treat individuals who buy / use their products / services with respect.

    The lack of respect suggests (at best) complacency and self interest and (at worst) contempt and bullying.

    I also totally agree with the PSG comments.

    With kind regards


  5. Hi
    Such delicious food for thought...
    I too am a mum to a dude who is 14 .
    1) the research that makes a difference to my son is around: what chemical differences he has, and how to (without chemicals) take them into account and discover what can he eat or do to create balance (ie he uses the B vitamins more than many and needs Marmite frequently - he is dairy intolerant and has MASSIVELY less snot, and can think more clearly without it etc etc). Also, research into how teachers and 'mainstream' activity masters can quickly and easily get some empathy and diversity training/learning and how they might be best supported to 'include' successfully (and address their fears). Also, research into how children can learn how to support and include their learning disabled peers would change the world (they currently don't have permission to even try... ) Also, Sensory Perception disorder identification and de-sensitization therapy has made the most humungous difference. Wiithout it he would have be classed as having 'challenging behaviour' so, information for all on what is being expressed by 'challenging behaviour' and why, is/would be transforming and amazing. Some research into how far research reaches, and how to make it reach further, more quickly - please.
    2) Stories
    3) Listen & then check you've 'heard' correctly.


  6. Hello! Thank you for your candid blog.

    I am a parent of a 20 year old young lady with severe learning disability, autism and a mild physical disability. She lives very happily in a supported living arrangement. I am also the sibling of a person with Aspergers who lives very happily and independently thanks to benefits. Both of these dear people could be in great danger from benefits cuts which are incompletely thought out and which are designed to disenfranchise a sizeable percentage of those who currently qualify for benefits. As the person responsible for ensuring their continued receipt of benefits I feel very weighed down and scared by the new systems which are make it much more difficult to succeed in obtaining rightful benefits. They are increasingly complex and require a high degree of expertise to successfully complete.

    One key point for research which could positively impact every single person with a disability - ( the subject is frequently mutating and becoming more and more slippery and slimy by the day) - is benefits changes and targets to cut benefits to disabled people. Cunningly, the media have complied with the government to bundle disabled people in with scroungers and layabouts.

    The drive to sweep everyone off their DLA and then invite them to make a very complicated application for PIP presents a great threat to continuity of care. The whole supported living philosophy relies on a continuity of benefits and these are constantly under threat.

    Moreover the task for the guardian/family member of applying for these benefits is a very complicated one and fast becoming a specialist expertise - if one is going to succeed in one's application.

    Vulnerable people who at present do cope because they are provided with an income thanks to the old benefits system (whose first duty was to the needy) are going to be in dire straits once their benefits fall through or shrink due to the tick-box nature of the criteria - which are assessed by a computer not a person.

    We need academics to keep an eagle eye on the developing situations; to analyse the changes and challenge the government; to bring about a sea-change in public perceptions so that disabled people are highly esteemed again; to ensure that the dearth of social workers who used to ensure the vulnerable disabled were financially kept afloat is somehow rectified as CAB simply cannot meet the burgeoning need.

    I am sure there are further aspects which I have not mentioned which more knowledgeable people than I could suggest!

  7. Hi Chris
    Re: 1 & 2, the key factor for me is involving (not just consulting) the very people the research is about. Not just as research subjects or objects, but as people with lived experience and a unique insight into the research topic. You probably know Peter Beresford is trying to do this with Shaping Our Lives. http://www.shapingourlives.org.uk/
    Re: 3 - well, I've mentioned Gramsci to you already. Crudely, he posited the idea that intellectuals (including, I would have thought, academics) have become detached from society and bolster capitalist relations (!) and the role of what he termed "organic intellectuals" were the key to the development of a socialist society. So if follows that academics can play a key role as "benevolent organisers" of society - i.e. research can be used for the promotion of justice and equality - or not. So take heart from Gramsci, he offers a framework for justifying what you are doing. Using academic research and knowledge, and linking it to movements or campaigns for social justice is a really important thing to do. http://averypublicsociologist.blogspot.co.uk/2010/01/gramsci-intellectuals-and-class.html

  8. Thank you for a great set of comments to this blogpost.

    As ever, I think you've summed up the potential pitfalls really nicely in your Gramsci distinction Graham. Certainly I feel the potential for detachment from society (think this is also part of a much bigger detachment that is being discussed quite a lot at the moment in terms of the culture of senior people across a range of health and social organisations). I think I also feel this acutely in terms of a sort of insider/outsider distinction - the sources of the money for the research I do and what the funders expect for their money could easily result in a sort of self-censorship, but at the same time a semi-insider role might be helpful too in terms of the potential to help change systems? (guess the helpfulness or otherwise is ultimately not for me to judge) Having told myself this comforting story, people in 'outsider' positions are absolutely crucial, and I suspect people in both positions working explicitly or implictly on shared goals might be the best way to try and force positive changes (but of course I would say that wouldn't I?)

    The second Gramscian role, of linking 'knowledge' in the service of (and working with) society (meaningful social change), sounds good to me, and I think the comments here show elements of what that needs to look like:
    1) Elle, PSG SpeakUp and Graham - you all talk about research that starts from a point of view of coalition with people with learning disabilities and families, with people with learning disabilities and families the ultimate decision-makers about what 'research' gets done. I have been wondering about a way of working where an academic researcher in effect acts as a technical consultant to organisations of disabled people who hold the research purse strings (I am sure there are lots of examples of this happening already on a routine basis) - to offer advice on different ways that the question might be approached and help with analysing the findings but always under the direction of the group of disabled people in charge of the research.
    2) Elle and Unknown - you both talk about the crucial importance of listening. Does what it says on the tin!
    3) Elle and FamilyRep - you both talk about the importance of academics getting involved in documenting/highlighting changes and inequities to the ways in which societies (mis)treat people with learning disabilities, as partners in a knowledge project for social justice.
    4) Kath - you make the point that research takes place within bigger structures and how those bigger structures (and researchers within them) work with people with learning disabilities and family members is vital.
    5) Finally (for now), you make the point Richard that research/knowledge translation into policy and practice that might make a positive difference to people's lives needs a whole host of people and organisations, not just researchers, to step up to the plate. This is undoubtedly true, but as usual with me, some caveats:
    a) I don't think there's often a knowledge translation path in this way - some things get taken up, some don't, and earlier learning can be unlearned/forgotten.
    b) In terms of what actually has a positive impact on the lives of people with learning disabilities and their families (and who decides what positive is is crucial here), are we as a research community that smart (and appropriately humble) about understanding how these processes work and the role of research within these processes?
    c) Related to the above point, what 'knowledge' is influential is really important, and from my limited experiences what counts as influential 'knowledge' is far broader than what many researchers would recognise as 'proper' evidence. Is this a problem? A topic for another day but I suspect it isn't, in that many forms of knowledge should count, and researchers don't need to lament this fact.

    Anyway, thank you again for these superb comments - great to be able to have these conversations.