Disability Knowledge on the Road Ahead: thoughts from a conference in Denmark

Bjarne Bjelke Jensen, Consultant, The National Resource Centre on Disability and Social Psychiatry, Denmark

On February 9th 2012, a rather unique event took place in Denmark. The Danish “Resource Centre on Disability and Social Psychiatry” arranged a conference on knowledge arenas in the disability field in the years to come – mainly with reference to the intersection of research and practice.

The purpose of the conference was to place disability into a larger perspective than is usually the case in a Danish context, where we have no real disability studies environment. The Danish NNDR network is the closest thing to an entity trying to connect the various social research entries in the disability field. Entries, that tend to be singular projects, somewhat isolated.

In our neighbouring countries, disability studies environments of various forms and shapes regularly arrange conferences with academic content. Since we have no such environments in Denmark, we have been lacking ways of connecting our practice contexts to new (academic) knowledge and research, thereby perhaps missing out on relevant, international developments.

Hence, disabled people’s organisations, policy developers, and people that are supposed to develop and implement new approaches, strategies and projects in practice contexts, have no obvious place to go for (that sort of) inspiration. Knowledge development tends to be limited to the dissemination of tangible ‘tools’, usually within a rehabilitation context. That is, we are told, what the practice level and the local professionals ‘want’.

Which, of course, makes perfect sense. However, the conference was an attempt to challenge both the Danish disability isolationalism, and the monocausal idea of professionals going to a conference or a course, fetchin’ an evidence based tool (possibly imported from Canada or the USA, with a nice abbreviation, and maybe even a certification), implementing it in a cost-effective way, and that’s it.

As such, there is no lack of impairment conferences, international networks, and/or impairment knowledge in Denmark. Hence, another point was to emphazise a linguistic problem that we may have in Denmark. ‘Handicap’ means ‘disability’ in Danish – but it tends to be thought of in terms of ‘impairment’. This is, possibly, one of the main reasons for a general lack of disability research.

An example: a main element in the global disability rhetoric the last 30 years has been Independent Living and the language of the IL-movement. Even though this is now a part of the UN disability convention (e.g. Article 19), IL remains a basically unknown concept in the Danish disability debate.

Personal assistant acts exist, yes, but they have never been part of or linked, in any resonant way, to the global unifying concept of Independent Living, missing out, perhaps, on the strong bottom-up-approach that characterizes IL, which in turn has had various spin-off effects in the global disability field, often hand in hand with social aspects of disability.

These days, global rhetoric is no longer just random shapes of disability activism. They now take the form of a UN convention that states ratify, and a WHO World Report. They take the form of knowledge. Danish disability isolation has come to an end, whether we like it or not.

Hence, we invited professors Simo Vehmas, Bill Hughes, Jerome Bickenbach, and Mike Fisher to come to Denmark to talk about disability and professional challenges in the years to come, along with three Danish speakers who would speak about 1) the disability movement and the DPOs, 2) inclusion in the schools and in society, and 3) social innovation, user involvement and service design.

As it turned out, user involvement and participation would become a common denominator. And, as we could tell from the list of participants (and the evaluation afterwards), leading professionals certainly want the ‘other stuff’ as well (as in not just fixed methods, readymade for implementation); they want the bigger picture, the global perspectives, the strategic debates, input from disability studies, aspects of ableism, discrimination, minority issues and so on. Concepts with little or no historic resonance in the Danish disability context. In short, they want to know about the current climate of the disability field – in order to become better professionals, with insight and knowledge, handling the openendedness that often characterizes the field.

Simo Vehmas opened the day speaking about new global agendas being created by the UN Convention and the World Report. He then linked them to philosophical and ethical perspectives on disability and social life, before moving on to the possibility of applying the Capabilities Approach (CA) when considering and facilitating the good life and social justice. CA resonates with intentions to measure wellbeing and quality of life, and this purpose is rather important in Denmark at a time when collecting data on disability is on the agenda.

Mike Fisher from Social Care Institute for Excellence (SCIE) in London was the next plenary speaker. His presentation dealt with the evidence base for social services, a theme extremely relevant for Danish policy makers. His main message was one of involvement, and – outcomes, outcomes, outcomes! And that outcomes to be measured should be defined by people who use services. One framework for working with these issues is ASCOT (Adult Social Care Outcomes Toolkit) which is somewhat related to CA and not entirely unknown in Denmark.

Of great relevance: SCIE’s approach to the concept of evidence is rather less ‘strict’ than has become the general thinking in Denmark. ‘Evidence’ and research is much closer linked to practice than we think, and a strong social evidence base relies on involving everyday practice in producing it.

Jerome Bickenbach spoke under the heading “Participation in Knowledge Arenas and the UN Disability Convention”. He identified 3 main focal points in the years to come: 1) Ageing, 2) The Rights Revolution, 3) Evidence-based Policy. Elderly services and policy will come to be inspired by developments in the disability field, not least services to do with personalisation and rehabilitation. The ageing challenge will come to be a natural driver for deinstitutionalisation for instance, thereby connecting it to the “Rights Revolution”.

Bill Hughes elaborated on his analysis on the current polarization in disability activism – the social model stalwarts and the biological citizens (Hughes 2009). What kind of identity politics characterizes the DPOs, and how can we grasp this polarization when trying to develop new methods and inclusive policy? To whom are we speaking? Biological identification patterns or social ones?

Bill Hughes firstly took us trough the aforementioned ideal types before looking at the distinction in a historical perspective. Claude Lévi-Strauss once said that animals are ‘good to think with’. So is perhaps the distinction made explicit by Hughes. The key point of relevance for the participants was the very distinction: In Denmark, we tend to speak about a relational and situational model (that is, when we speak about ‘models’, which we rarely do), always seeking consensus.

Maybe these ideal types help us to grasp what is at stake when dealing with disability politics and service developments, when discussing the mechanisms of diagnoses and diagnostics, disability advocacy, and when analysing the current medicalisation and ‘neurofication’ (if such a word exists) that sweeps through society at all levels, not least influencing the disability gaze. In short, we need to ‘grasp the divide’, in order to analyse a whole spectrum of issues to do, one way or the other, with disability.

Unfortunately, there is no room here for a few words on the Danish presentations but for those of you who read “Nordic”, their slides are online along with the rest of the conference material:

www.servicestyrelsen.dk/aktiviteter/handicap/gamle-aktiviteter/handicap-fremadrettet

Next year, we’ll arrange a conference with a similar scope.

Reference

Hughes, Bill (2009): Disability activisms: Social Model Stalwarts and Biological Citizens. Disability & Society Volume 24, Issue 6, 2009.

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