FAMILY CARE: BROADENING THE RESEARCH AND POLICY AGENDA

McConnellDavid McConnell, PhD, Professor and Director, Family and Disability Studies Initiative, University of Alberta, www.fdsa.ualberta.ca

Researchers have focused a great deal of attention on family adjustment and adaptation to children with disabilities. The traditional and still dominant approach to research in this field starts out with the assumption that having a child with disabilities is a ‘disturbance’ or ‘perturbation’, and then focuses on stress and coping processes, and what are usually presumed to be ‘outcomes’ for other family members. Many studies have investigated stress and psychopathology among mothers [and to a far lesser extent, fathers and siblings] of children with disabilities, the stress-buffering role of social support, and the utility of various coping strategies. This research has had a number of positive impacts. It has, for instance, helped justify services such as early intervention, in-home help, psycho-educational programs for parents and respite care. Continue reading

No entry: exploring disability and migration

Dr Nicola Burns, Researcher at Institute of Health and Wellbeing, University of Glasgow, UK

Over the past two years I have been working on an EU funded project into migration and health, specifically focusing on cross-cultural communication in primary care consultations (see fp7.restore.eu). At first glance, a long way away from my research interests in disability studies and risk. Working on this project has however provided me with an opportunity to consider the intersection of disability and migration. Disabled people and migrants represent significant minorities throughout the globe (IOM, 2012; WHO, 2011).

Migration is a global phenomenon with an estimated 216 million migrants across the world, with a third residing in WHO European Region. It is unknown how many migrants are disabled, but taking recent estimates on prevalence of disability, it is not unreasonable to assume that between 10-15% of migrants are disabled. The intersection of disability and migration is complex and to an extent unknown. Both designations hide extremely diverse and heterogeneous populations with a range of capabilities and possibilities.  Both groups face structural and systemic barriers to asserting and realising their rights to participate in society. While disabled people have seen an increasing recognition of their rights to participate fully in society; migrants face increasing restrictions in this regard. A key aspect for both groups is the issue of citizenship.  Arguably, while disabled people have seen a formal recognition of their rights to participate fully in society in some countries; migrants face increasing restrictions in this regard. Both face challenges in their ability to realise citizenship rights, however defined. At the international level, a language of rights is utilised for both groups, this is dependent upon state interpretation and practices. Continue reading

The Punk Syndrome

Minna Pietikäinen, M.Scs.

Over the last few years, people with intellectual disabilities (ID) and their rights have gained increasing attention in Finnish media. For example, the leading Finnish newspaper Helsingin Sanomat has in some editorials raised the issue of deficiencies in the living arrangements of people with ID.

Despite more recent de-institutionalization, Finland still has the highest proportion of institutionalized people in Scandinavia (Pelto-Huikko, Kaakinen & Ohtonen, 2008). Medical knowledge may often be taken for granted when describing people with ID. As Seppälä (2010) states, until the 1980s people with intellectual disabilities were studied within institutions and research about them today may still contain bias caused by diagnostic overshadowing. When a person is diagnosed as disabled, these expectancies may affect the observations that are subsequently made. In this context, the position of a patient in an institution is offered to the intellectually disabled person, and other kinds of subjectivities are denied. Continue reading

‘Ought’ and ‘is’: about the importance of normativity to disability studies[i]

simo-vehmas_mediumIt seems safe to suggest that the ethos of welfare state has been the normative foundation of Nordic disability research. But having said that, it seems equally safe to suggest that disability scholars haven’t engaged properly with the normative issues to do with disability; the ethical and political issues that, after all, have a great significance on people’s well-being. Researchers have primarily aimed at describing neutrally how things are, while normative issues having to do with how things ought to be, have been left to political activists, philosophers and other possibly suspicious characters.

We have valued, correctly I believe, the autonomy of academic research. In the spirit of Humboldtian tradition, we have emphasized the freedom to choose questions and methodology to carry out research, and to publish their results even if they were politically, ethically and emotionally sensitive or even uncomfortable. Continue reading

Bedding Out: a new performance with virtual participation

Bedding Out: a new performance with virtual participation

Bedding In Bedding Out is a response to the UK’s current welfare benefits overhaul, which threatens many disabled people with poverty. It has been associated with the deaths of at least 32 people each week found ‘fit for work’[i] and with a propagandist campaign that has seen disability hate crime leap by 50%[ii].

For 48 hours round-the-clock, in an art gallery, I will be taking to my bed, exhibited behind a red rope barrier. Continue reading

Disabled children, inclusion, and physical education in Sweden

Kim Wickman, PhD, Senior Lecturer, Dept. of Education, Umeå University, Sweden

Is Swedish education inclusive and does it comprise inclusive teaching? Are schools able to handle normal variations of differences among children and young people in the subject of physical education and health? Is there any clear boundary between what are regarded as normal variations and what is perceived and understood as so divergent that there is a need for special measures? Continue reading

Are there still unpopular sides of disability research?

Karen Christensen, Professor, Dept. of Sociology, University of Bergen, Norway

A long time ago – at least as it is defined in the academic world – in the 1990s, the British professor of social policy Clare Ungerson published an article: “Give them the money: Is cash a route to empowerment?” In this article she forecast many of the challenges implied by welfare policies intended to empower disabled people in their everyday lives by means of cash payments. The idea was that instead of letting disabled people receive traditional services such as home help they should receive money to employ their own care workers and this should be “a route to empowerment”. The important contribution that Ungerson made with this early article about these cash payments was to point to the care worker’s perspective within a welfare scheme that aimed at providing services on the users’ terms. As much as she criticized disability writers in this article and in later articles, as much was she criticized back by disability writers such as Jenny Morris and others. Continue reading

The Politics of Walking

Barbara Gibson, Associate Professor, Dept. of Physical Therapy, University of Toronto, Senior Scientist, Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Canada, Barbara.gibson@utoronto.ca

In 1993 Mike Oliver posed the question, what’s so wonderful about walking? (Oliver, 1993) and lamented that an uncritical ‘ideology of normality’ permeates rehabilitation.  He further commented that ‘(r)ehabilitation constructs the concept of walking uncritically in that it is never analyzed or discussed except in technical terms – what surgical operations can we perform, what aids can we provide and what practices can we use to restore the function of walking’ Others have also been critical of rehabilitation and its fundamental assumptions about disability (Davis, 1963; French &  Swain, 2001; Stiker, 2002 (1997)). These ideas however have been slow to reach the audience where they might make the most impact, that is, rehabilitation practitioners, educators and researchers. Continue reading

Right to the city: a disability perspective.

Inger Marie Lid, Associate Professor, Oslo and Akershus University College of Applied Sciences, ingermarie.lid@hioa.no

Professor Edward Soja was in Oslo a few weeks ago and gave a guest lecture at University of Oslo, Faculty of Theology. The lecture and following discussion included topics on spatial justice and right to the city. In his book Seeking spatial justice (2010:75), Soja notes that early ideas about justice have revolved around urban-based civil rights and the actions of citizenry in a public realm (civil society). According to Soja, these ideas represent one of the earliest notions of specifically spatial justice, a conception of social justice in which geography matters in significant ways. Continue reading

How can we explain violence against disabled people?

Dan Goodley, Professor of Psychology and Disability Studies, University of Sheffield, School of Education, D.goodley@sheffield.ac.uk

It is perhaps not surprising to disability scholars though still sobering to learn, in the current climate of austerity and economic downturn, that disabled people are more likely to experience hate crime. A recent roundtable chaired by Tom Shakespeare of the World Health Organisation at the 2012 Disability Studies conference in Lancaster drew necessary attention to hate crimes in nations from Zimbabwe to England. One got a sense of a global epidemic of disablist hatred as contributors provided depressing and harrowing data on physical and psychological crimes. Conference delegates heard statistics on mental and sexual abuse, battery, vandalism of home and grievous bodily harm. These testimonies from colleagues such as Tsitsi Chataika and Alan Roulstone in the aforementioned nations importantly capture what is happening on the ground. Today. 2012. Actual acts of seemingly mindless violence. But how can we explain and understand this violence? What counts as violence against disabled people? And when we think of violence what do we have in mind? Whilst it is morally and politically necessary to recognise and challenge physical acts of violence – epitomised by hate crime – do other more subtle forms of violence exist that are as equally damaging to disabled people? Such questions might seem banal, trivial and typically academic. These questions appear to move away from the realities of hate-fuelled acts to the naval gazing realm of frothy theory often typified by those of a postmodern persuasion. Yet, on closer examination, one could conclude that these questions broaden the concept of violence and demand a more considered response. Continue reading