I arrived in Copenhagen, papers and powerpoint in hand, feeling just about ready to present my first paper at a major international disability research conference. The Nordic Network for Disability Research is a biannual conference and this year’s topic was ‘Inclusion and Exclusion in the Welfare Society’… topical! I was soon joined by fellow PhD students Adi Goldiner (Kings College London) and Alex James Tate Miller (University of Birmingham), who I was presenting alongside.
As we settled into the apartment we’d rented for the three day conference, I was relieved to find that our symposium was in the opening slot; we could get it done and then be free to soak up the 400 plus amazing minds surrounding us. These included Professor Katherine Runswick-Cole, who gave a fascinating key note lecture – The trouble with hard working families work disability & austerity – on the way ‘family’ is constructed in neo-liberal-ableist societies.
In this lecture she problematized the language of the ‘hardworking family’ so often used in UK politics today, demonstrating how this sets up ideas of families deserving of support and those not deemed worthy. Another key note lecture, given by Professor Kjeld Hogsbro, was of particular relevance to my work as he used disability perspectives to challenge purely medical understandings of mental illness.
Exclusionary factors in claiming disability rights
The title of the symposium I spoke at was ‘Exclusionary factors in claiming disability rights’. Together, Adi, Alex and I explored issues that disabled people might face when trying to claim what should be theirs by right. Adi went first. In a paper called ‘Claiming Disability Rights with a Sense of Dignity and Pride’, she explored how different models of disability interact with the law and with people’s decisions to identify with disability in order to claim disability rights.
I went next, discussing how a person’s intersectional location might lead to difficulties claiming disability rights; difficulties that are different to those faced by people differently located (see NNDR slides). By intersectional location I mean the marginalised place that some people occupy as a result of belonging to multiple social categories that, when brought together, carry specific oppressions. Finally, Alex presented a paper exploring testimonial ‘smothering’ in psychiatry called Contributory injustice in psychiatry.2018 Miller-Tate He outlined several reasons why mental health service users might avoid speaking openly when interacting with mental health services. This, he proposes, leads to a ‘smothering’ of their testimony.
In summing up the three papers, Professor Mor (who chaired the symposium) noted a theme common to all three papers; the need to consider lived experiences of interactions with disability if the claiming of disability rights are to be enabled. She added that these papers highlighted attitudinal and structural barriers that obstruct disabled people from claiming their rights, and the way stigma around disability can be internalised to create further barriers.
The question and answer session, a comment was made by the assistant to the special rapporteur to the UN CRPD regarding the way disability rights were framed in the papers and the potential for universal approaches to support greater inclusion. These comments were responded to by another member of the audience who highlighted difficulties in taking universal approaches and who questioned the applicability of the UN CRPD in non-western contexts. All in all, a very interesting discussion ensued in the short time that followed.
So many talks, so little time!
A few talks that I attended really stood out to me. Jagdish Chander’s discussion of ‘Marginalisation and exclusion of disabled people by the Indian state’ setting out a history of how disability has come to be in public discourse in post-colonial India. In the discussion that ensued, Jagdish was asked how disability was understood pre-colonialisation.
His answer included an explanation of how ‘the disabled body’ was – and in some rural parts of India still is – understood as part of the familial body. In this he highlighted differences in concepts about privacy and individualism. I asked how this idea of the ‘familial body’ might play out for disabled people with Indian backgrounds in the UK.
Jagdish highlighted the role that ‘class’ would also play a part in how a family of Indian heritage in the UK might negotiate disability. This reinforced, for me, the need for rounded understandings that consider how multiple aspects of a person’s identity and social situated-ness impact on people’s actions in relation to disability.
The importance of intersectional considerations, such as those highlighted in my own presentation, were reinforced in this response and in a later talk by Reetta Mietola. Her presentation on ‘Building common ground across differences’ set out findings from empirical research undertaken with young people in Finland to discuss discrimination.
Care was taken to invite young people who could represent a wide spectrum of marginalised groups, such as minority ethnic groups, migrants, disabled people, etc. Something I found very interesting was the young people’s rejection of readily accepting labels placed on them. They either actively rejected them or emphatically stated which labels their self-identities included (with the effect of rejecting others placed on them).
A conclusion of this work was that many young people in Finland identify with multiple groups or between groups, and if activists working in the identity politics space want to engage young people they will increasingly need to consider instersectional experiences and blurrings of traditional social categories.
Another symposium that caught my attention was one called ‘Disability and welfare reform under austerity: international perspectives’. The first speaker, Ida Norberg, considered changes to the Swedish welfare system that have impacted disabled people. She highlighted the indirect means of implementing austerity enacted by the Swedish government, which included increased bureaucracy, no inflation of specific benefits over time, increased spend on processes rather than benefit payments, and work to redefine eligibility criteria.
She also highlighted public discourses where welfare fraud and the affordability of welfare are repeatedly highlighted, stating that such discourses are just a step away from declaring disabled people as ‘too costly’ for society. In a discussion after her talk, Ida told me that one of the reasons she wanted to look at practices in Sweden was that it is often sighted as a shining example of what support for disabled people should look like.
In highlighting ‘indirect austerity’ practices being applied in Sweden, she questions this perception whilst also bringing into focus some of the more insidious ways that other countries, like the UK, are implementing austerity. This talk was followed by a presentation by Volkan Yilmaz on changes to disability policy in Turkey. He highlighted the way that ‘disability’ had been adopted by more extreme religious political parties in Turkey as a ‘cause’, with the aim of ingratiating themselves to the general populous ahead of elections in 2005.
He also highlighted the dangers of providing welfare to households with disabled people instead of the disabled person themselves, using Turkey as a case in point. Also on this panel was Tom Porter, who presented qualitative data considering the experience of claiming disability-related welfare in the UK. A claim of particular interest to me was that the continued commercialisation of public services in the UK has enabled increased shirking of responsibility by the government for the difficulties disabled people currently face as a result of welfare claiming processes.
A final talk I want to highlight was that given by Professor Zahnd, which was titled The ‘shaping’ of disability through the World Bank’s discourses. This fascinating presentation highlighted the results of a discourse analysis of World Bank documents discussing disability over time. He found that discussions of disability within the bank date from the 1970’s. The focus then was primarily on malnutrition, river-blindness, measuring disability and health issues, and the cost efficiency of interventions. At this time disability was very much understood as a consequence of health issues, hence the focus on measuring disability and cost effective interventions.
In the 1980’s-90’s, more neo-liberal influences became visible in the discourse as discussions increasingly focused on social security and disability became understood more as ‘an abstract variable’. By this I mean that focus shifted away from living conditions onto ‘numbers’. Central themes within disability-related discussions included defining target groups for welfare, and welfare and pensions calculations.
In the 1990’s, the word ‘tightening’ was increasingly used in reference to the cost of pensions provided to disabled people. Additionally Professor Zahnd found an emerging scepticism regarding the number of declared disabled people, which seemed to the bank to be too high a proportion of populations.
Finally, he reported that in 2000-2010, disability finally became a topic deemed worthy of consideration as an issue in itself. Focus turned to disability in the Global South and India, special and inclusive schooling and social inclusion projects. A focus on the statistical measurement of disability remained. Professor Zahnd contextualised this shift to the implementation of a disability specific team within the bank who aimed to mainstream disability issues in the bank and promote more social model approaches.
However, it seems they had limited success as, though there was an increased focus on issues such as inclusion, these were in addition to – not instead of – discussions employing more historic treatments of disability and health. Following the presentation I asked Professor Zahnd if he had noticed any shifts in the discourse following the financial crisis of 2008.
He stated that this was something he also wanted to explore further, but did not as yet have data running late enough to say anything conclusively. However, he noted that there was a slight shift towards considerations of efficiency and welfare issues just prior to the crisis. I noted that this paralleled shifts in discourses about welfare in many Western welfare states around 2007/8… a research project for another day perhaps?
‘Stephanie on stage with performers of Vivaldi
A place for artistic expression
These rich presentations were interspersed with the showcasing of art by disabled artists. At the close of the first day, we were treated to a performance of clowns. The piece, named ‘Vivaldi’ and set to the ‘Four Seasons’ took place in a restaurant.
It highlighted the behaviours that those in empowered positions can indulge in, even if these behaviours are nonsensical and degrading of others. To my surprise I was pulled up on stage for some audience participation. I, along with another lady, was asked to wait at the door of the restaurant until the head waiter opened the restaurant. We were repeatedly led to a table by a waitress and then sent back to the door by the head waiter to wait just five minutes more until they officially opened. A parody of welfare claim process perhaps?
Additionally, the head waiter repeatedly denigrated one of the older staff members whilst wanting to hold on to her copy of Vivaldi, which was integral to the restaurants’ atmosphere. You’ll be pleased to know that the waitress and chef came to the aid of their older colleague and the head waiter ended up with a cream cake landing smack bang in his face. Vive la resistance!
Throughout proceedings an exhibition of paintings, drawings and prints made by a collective of Danish disabled artists was available for perusal. A drawing that I was particularly drawn too depicted five or six people in a Viking boat. The subtle greys and blues applied sparingly across the line drawing transported me to the high seas with a sense of whimsy that was refreshing after the heavy topics of the conference.
At the close of the conference, Irish fiddle player Fionn Angus regaled us with a rendition of Danny Boy and proclaimed Ireland an honorary Scandinavian nation. A fun ending to a fabulous and informative conference!