Earlier in May, we had a chance to take part in this year’s Nordic Network on Disability Research (NNDR) Conference, which was titled ‘Inclusion and Exclusion in the Welfare Society’, and took place in Copenhagen, Denmark. The conference brought together lecturers and researchers in disability studies from across the globe, though most were from the Nordic and anglophone countries. ENIL was represented by its Deputy Director Ines Bulic Cojocariu, who spoke at the symposium on ‘Disability Activism and Advocacy in the Post-truth Era’, led by Prof. Karen Soldatic and Prof. Kelley Johnson, from Australia.
Although aimed at academics, NNDR is equally useful for DPOs that may wish to learn from the current research or establish links with researchers. This year’s conference was made up of a large number of parallel sessions on topics ranging from art and disability, citizenship, education to austerity, which were interspersed with keynote speeches.
From ENIL’s perspective, the most relevant was the opening keynote by Prof. Jesper Vaczy Kragh, who focused on the patterns of exclusion of disabled people in Denmark. He spoke about the appearance of institutions (then referred to as hospitals) in the 17th century, and their rise and expansion in the 19th and 20th century. The growth of asylums, as he explained, was closely connected to the rise of the welfare state, and the compulsory institutionalisation went hand in hand with forced sterilisation and castration of disabled people and the use of psycho-surgery (i.e. lobotomization). Although the process of deinstitutionalisation began in the 1980s, he noted the current trend of re-institutionalisation in Denmark. As examples, he spoke about the opening of new institutions for up to 100 people, the re-introduction of psycho-surgery, the expansion of prenatal screening and the growing calls for allowing euthanasia.
Another interesting session focused on the implementation of UN CRPD in the Nordic countries, which featured Prof. Rannveig Traustdottir, from Iceland, Stig Langvad, a fomer member of the CRPD Committee and Laufey Love, from the US. It was good to learn that there is no such thing as a ‘Nordic approach’ to CRPD implementation, with many differences between the countries. As one of the main barriers, the speakers noted the good reputation of the Nordic countries and the wide-spread arrogance that they could not get any better. Nevertheless, among the many barriers highlighted during the session were that of the multi-level governance, the re-interpretation of rights under national laws, insufficient funds, persistence of institutional culture in Small Group Homes and work places, the lack of knowledge of UN CRPD in the justice system, and the negative attitudes and stereotypes about disabled people.
A session on austerity featured speakers from Sweden, Turkey and the UK. In Sweden, Ida Nordberg noted that austerity went largely undetected, with all the changes made under the claim of safeguarding the welfare state. Without making changes to the law, the authorities managed to restrict access to rights in practice, by redefining ‘basic needs’, increasing the amount of red tape, and reducing funding for support, while increasing funding for the processing of benefits. Volkan Yilmaz, from Turkey, spoke about developments that led to the 2005 Law on ‘Handicapped’ People and its subsequent amendments in 2014. Despite a move towards individuals rights and freedoms, independent living and anti-discrimination, disabled people are still seen in Turkey as the deserving poor. The ‘cash-for-care’ scheme, for example, is paid directly to the family carers (0.5 mil households are in receipt), who are not subject to labour regulations and are not covered by the social security system. Having been introduced without empowering disabled people, this policy has led to the continued dependence of disabled people on their families, despite the changing public discourse on disability.
Finally, it is worth highlighting the session on everyday life, housing and life quality, where researchers from the UK, Norway and Sweden presented papers on the self-determination of disabled people living in Small Group Homes. The use of group homes, accommodating 4-5 residents, has been expanding in Norway, with 40% of these settings currently accommodating 7 residents or more. Research presented involved interviews with professionals working in the group homes, as well as residents, and was interesting in that it highlighted the lack of self-determination of people who lived there, despite the overarching policy being that of ‘normalisation’. Linked to this was research in Sweden, which look at individuals’ support plans (referred to as implementation plans) and the extent to which these facilitate decision making within the group homes. The overall conclusion was that the plans are unable to address the power imbalance between the provider and the user in the group home, with the lack of participation of users in the drafting of these plans also highlighted. For example, despite many residents using communication aids, only 1 out of 42 residents was offered one when discussing their plan with the professionals.
Having just hosted a Marie Curie Individual Research Fellow, ENIL will continue maintaining links with disability scholars, some of whom are members of our Independent Living Research Network (ILRN). Should anyone wish to join ILRN or share their research with ENIL, please contact Teodor Mladenov at email@example.com.
Finally, we are pleased to announce the publication in September 2019 of the Global Perspectives on Disability Activism and Advocacy: Our Way, edited by Karen Soldatic and Kelley Johnson, and published by Routledge. The volume features a chapter on ENIL’s advocacy on the use of European Structural and Investment Funds, written by Ines Bulic Cojocariu. The book is available for pre-order here.