My (disabled) identity

Who am I?

This blog was prompted by being ticked as ‘disabled’ by someone on a form. It’s not an identity I own. Here’s why…

Disability is about being dis-abled. Any disability I have is not located in me, my body, my brain. Rather, it is located in the stuff that makes up our society and our everyday living. It is about social structures, attitudes and assumptions that reduce my ability to participate in society on an equal footing with others.

That’s pretty standard ‘social model of disability’ stuff.  The social model of disability has served well as a statement of facts, re-orientation of thinking and rallying cry for people being dis-abled because their bodies, minds or health are seen as wrong, impaired or inconvenient. Without the social model, we would not be where we are today. Without it, many more people would accept society's labelling of them as second class and broken. 

But I’ve got two queries about this approach as I look into the future. First, if the key factor in disability is how society is organised, why do we reserve the term for occasions where our physical bodies, mind or general health are in conflict with the kinds of bodies, minds and health that society values and organised itself around?

Why not include other reasons for me being dis-abled?

·         I am dis-abled in terms of my low income.

·         I am dis-abled when I am discriminated against because I am a woman [and that opens a whole new debate. If one site of discrimination is because a woman’s body is the "wrong sort" of body in terms of how society organises itself, does that mean women should be included with people who have the “wrong sort of body” because they have fewer than four functioning limbs?].

If we insist that the term disabled people is only for people with impairments, then we are back to foregrounding the individual. There is no way we can play with language and pretend impairment is anything other than a deficit word. ‘Impairment’ sets us up to compare a fictitious norm with something less than the norm (not other or different, but less). I find the Indian term ‘inconvenience’ far less irritating. It recognises that some aspects of our bodies and brains can be incredibly inconvenient to us as we try to operate and thrive in a world that disables us.

My second problem with disabled identity is that I am me. I am unique. I have an identity as me. It is very difficult to pick one aspect of what makes me me and foreground it as THE aspect that should be the primary influence for how I interact with the world. When I met the legal criteria for being a disabled person (and actually I still do in many respects), that was not always the side of me that dominated how society and I interacted or the reasons I was dis-abled. I have attributes in common with David Cameron, my friend with Down Syndrome, Jeremy Corbyn, the woman in drug abuse recovery, the person who does not identify as male or female. And I face barriers to fulfilling my potential and being valued for me for all those reasons.  I have an identity. That identity is me. Me as a whole person. So that is why I have never accepted a disabled identity. 

Now, I will gladly be labelled and identified with others who share being disabled by a particular social barrier. Labels can make it easier to lobby and fight to get rid of that specific barrier. I’m particularly happy to publicly own a label that I could have hidden, because that label is highly stigmatized. I’m articulate, got great support networks and a strong sense of self and I have the luxury of the choice to hide that label and ‘pass’ as ‘normal’. By publicly sharing the label, I am challenging the stereotypes that go with the label, and standing in solidarity with people who cannot hid from their label. That does make sense to me.

But my fear is that, ultimately, this way of thinking will not create an inclusive society. An alternative approach is to challenge the ways of seeing the world that can make everyone's life more challenging, lead to most of us being dis-abled at some points of our lives and lead to some of us being dis-abled at every turn. The alternative approach says we have value, we are acceptable and we have an equal place in society because we exist. It says each person is unique, and labelling people into groups is meaningless. It says we need to find the most inclusive ways possible of relating to each other, working with each other and creating social ways of doing things. It sees diversity as a huge strength for society, and looks for ways to celebrate and enhance diversity rather than manage it.

In a nutshell:

·         We are all of value and all belong in society. So why not organise life to be inclusive for as many of us as possible, regardless of labels? The number of people being dis-abled would go down instantly.

·         Inclusivity means different practical actions for different people. But the bottom line is without inclusive attitudes and ways of seeing the world, practical actions alone won’t stop disability.

·         I don’t call myself disabled because I refuse to be dis-abled by society. But I make an exception to that rule when stereotypes and stigma need challenging

If anyone is curious about my ‘stigmatising label’, you’ll just have to read my other blogs ;)

Co-production of research

Co-production is pretty much what it says on the tin. It is co-(together-) production (producing something). It could apply to anything from me sitting with my daughter to produce a birthday card together, to a film unit making a documentary.

In public service jargon, it has more specialised (and highly disputed) meanings. It is variously used to describe a public service talking to people using the service, statutory bodies working with third sector bodies, a social worker and disabled person working out how the disabled person can get the support they want or a public service finding a way to work on an equal footing with members of the local community to make sure the community gets the services they want.  For what it’s worth, I reserve the term ‘co-production’ for the latter two usages, because the first is just a rebranding of engagement or involvement activity (ie have a say, but we control how much say you can have) and the second is already adequately covered by the concept of partnership working. What the latter two uses share is a disruption of social norms, reframing of relationships and an acknowledgement of shared power.

Co-production is increasingly used in relation to social research, frequently bringing its public service meanings. 

Co-production in social research currently overlaps concepts of emancipatory, inclusive, democratised and participatory research.  It includes collaborative research. And it overlaps much that is fundamental to the practice of good quality qualitative social research.  I would argue that you can’t do good quality qualitative research if you don’t at least check your interpretation with the people who gave you the data in the first place – ie if you don’t co-produce the analysis. [If you think you can, then the chances are that you are using a qualitative method with a positivist mindset and (I’d argue) this takes the point out of qualitative research - but thereby hangs another blog.]

Power

Both social research and public services face immense challenges in trying to renegotiate power relationships within structures that assign power, control and accountability to some and passive, dependent roles to others. In public services this is most clearly seen by the divide between those who are and aren’t employees of the organisation, between those deemed inside and those deemed outside information and data-sharing circles. In research, the divide is created by the drawing of the ethical approval/informed consent dividing line.

This social research non-negotiable dividing line is between relationships that  requires ethical approval and (signed) informed consent from one party before the relationship can begin, and relationships that exist on the academic side of the dividing line. For example, non-academics could be involved in co-production as joint applicants with an academic for a grant, putting both parties on the academic side of the line. In this situation, the relationship can begin, develop and flourish within needing ethical approval. Or the co-production could involve the kind of ongoing work on data interpretation found in some ethnography – where the members of the community under study become research participants (needing ethical approval) rather than research collaborators (on the academic side).  This has profound implications for nature of the relationship.

At times, decisions about which sides of the line to put the co-producers seem arbitrary. But once allocated a side, there are strict procedural rules to govern their research relationship. If the co-producers are on the same side of the line, there are ways to negotiate power dynamics that allow both parties to have equal voice, choice and control, while recognising the different skills, knowledges and experience each bring to the relationship.  Put the ‘co-producers’ on different sides of the line though  and –

And you have destroyed any chance of full-blown, transformative, meaningful co-production. You have diminished co-production to the level of choosing when and how to allow people to have a voice as research participants while retaining the power on the side of the academics.

What you may have is a better way of doing social research, because those being researched are allowed to have more voice within and about the research. This can only lead to better qualitative research.

But what you do not have is co-production. Nothing has changed in terms of

• power relationships within the research (academic chooses the extent to which participants can exercise power)
• attribution of the research when it is published (ie to the academic is named, usually with little or no acknowledgement of the essential role and crucial inputs of those on ‘the Other side’ of the procedural ethics line)
• disruption of social norms (it's business as usual, with the added warm glow on the academic side of empowering people and the desperate hope on the participant side that their voice has been heard and made a difference)
• challenging inequality between researcher and researched 

As part of talking co-production in research, therefore, we need to talk about the power dynamics that lie behind the procedural ethics of universities, NHS and other bodies.  We need to talk about what determines which side of the line people should be. We need to talk about relationship ethics, the ethics of interpretation, authorship and ownership.

I don’t have the answers to this. I don’t know how we carry out ethical co-productive research.

I do know that no-one wins when we use the term ‘co-production’ loosely because we think it adds credence to our research.

In the meantime, let's avoid the lazy and potentially misleading use of 'co-production' to describe our research, and make explicit the power dynamics, relational ethics and procedural ethics of our research relationships.

Down the rabbit hole

Yesterday I was sat quietly in a beautiful eatery trying to explain what I'd been up to in Cardiff.


The All Wales People First conference was easy enough - it was fantastic being there as people with learning difficulties from all over Wales got into radical politics, or rather got into Welsh politics in radical ways.


But Gov Camp Cymru? That was harder to explain. I still feel a little as if I fell down a rabbit hole and haven't quite emerged. It wasn't the 10-5 part of the Gov Camp. That part was huge fun, with some amazing conversations and everything you could hope to get when an unconference brings together people from radically different worlds but a shared interest in improving public services.


What I need to think through is the source of the rabbit hole experience - the socialising pre-camp and after-camp (and the after-after-camp - I slunk off when people headed for the after-after-after-camp).


The rabbit hole experience was being in conversation - admittedly well lubricated conversation - with people who I'd never usually meet, who talked of things I'd never heard, who socialised in ways I'd heard about but never really experienced, and who had no barriers to my being part of conversation and conversed with me as if I fully belonged with them.


Now, I'm used to being a hanger-on in environments where I don't belong, because that's how I observe, learn and form new connections between parts of my thinking/knowledge. In ethnographic terms, I'm great at being a participant-observer when I'm in unfamiliar settings and being an observant-participator in familiar everyday life. I have neat pigeon holes for those kind of social relationships, learning and reflecting.


It feels like going down the rabbit hole because my nice pigeon holes were disrupted. I'm sat here even as I blog, with head on one side, trying to work out what was so pleasantly but disorientatingly disruptive about the pre- and after-camp socialising.


I guess it felt a bit like being in an ethnomethodological breaching experiment. These where you deliberately act 'out of role', for example by going home to your family but acting as if you were a total stranger meeting them for the first time. [I wouldn't recommend trying it, but here's a description]. Breaching works because of something called Membership Categorisation Analysis. We automatically make people members of different categories, and we interact with them based on whether they are members or not of the same category. Now, whatever way we look at categorising people (and therefore who is a member of that category), we were not in the same category. And yet, they interacted with me as if I was. That is where the disorientation and disruption began.


I think I'm safe to assume that people weren't taking part in a breaching experiment without telling me.


So where does that leave me? I guess it leaves me wondering what category we share, a category that I didn't recognise but they did.


Or perhaps they were simply operating within a different Deleuzian paradigm where there are no categories. A sociology lecturer did warn me once that it was possible to get lost down an every-deepening vortex - a rabbit hole - unless I kept some kind of external bearings when contemplating work by Delueze, Derrida and other post* thinkers. He didn't warn me that some people actually live this way. A Deleuzian way of being would definitely fit with the snippets of conversation I actually understood and the style of conversing and relating with each other. Certainly that's far more probable than the chance we share a category that I didn't recognise.


And that's fascinating to me. Usually I'm the one pushing the boundaries for saying things aren't fixed and binary. But I hadn't realised until thinking & writing this blog how bound I am to using membership categorisation to make everyday sense of the world. For all that I think I'm post-structural, really I just peek down the rabbit hole while keeping my feet firmly in the garden.


And so I emerge from the rabbit hole. I've found a pigeon hole for the experience. And I will reflect, from my nice safe orderly garden, on whether the Alice-in-Wonderland world down the rabbit hole or the garden world above is the world that will lead to the radical social changes that I think are needed if Wales is to become truly inclusive for all.