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.

Since the late 1990s cash-for-care schemes have developed in different ways in many European countries and there is a growing literature investigating this welfare scheme. However, this basic tension underpinning the field is still the same and also, reflecting this tension: the care worker perspective is still the perspective that is under-researched within the disability research field. Although currently ‘multidimensional aspects’ and ‘inter-disciplinary studies’ are keywords for new research projects, many networks and associated research areas are specialized or restricted within limits and this may take some of the research on ‘care’ – actually an unpopular concept within the independent living ideology which has pushed forward welfare schemes that could empower disabled people – out of disability research. Interestingly, this does not seem to be the case with research on long-term care for older people, where studies about elderly care – on the contrary – are a central part of the research area.

I am currently working on a study about welfare, migration and care work, which is empirically based on life histories of migrant care workers in Norway and the UK and I find that it is important to include some aspects of this research study in the disability research area. There are two reasons for this. One is empirical and concerns the life stories: in all of them care work, and particularly personal assistance work for disabled people, plays a role, but the role varies in relation to the different life projects of the migrants. The second reason is that migration is no longer an issue only for countries like the UK with its colonial past and long traditions of bringing migrant workers into the workforce; it has also become an issue in Nordic countries. Here, e.g. the health and care sector is one of the main employment areas attracting migrants, in particular women. In the UK, migrants have played a role in the cash-for-care scheme since its start, while this is a more recent phenomenon in Norway. The difference is due to the different timing of the migration waves in the two countries; in the UK starting already after the WWII while in Norway significant numbers of migrants first started coming after the EU extension in 2004, opening the borders to citizens from several East-European countries. In other words: migration is now an issue for the cash-for-care system and for the discussion of disabled peoples’ empowerment in both countries.

Due to the ageing population in both countries there is a growing need for workers in the health and care sector. However, in the UK and Norway (as well as the other Nordic countries) this sector experiences a recruitment problem, in particular regarding direct care jobs. This type of work is stigmatized as female low status work and in particular in the UK associated with very low payments. Therefore the work is often seen as unattractive to indigenous workers and the shortages caused by this contribute to the explanation as to why the work appeals to migrant workers. Among the multiple motivations for migrants to take this work are e.g. the lack of recognition of their qualifications and the necessity therefore to take the kind of jobs that are available and the flexibility of these kinds of jobs (part time, no fixed hours, live-in options etc.) which may appeal to their specific life situation. Overall, the structural point of departure, however, is of a reserve workforce situation which raises issues regarding e.g. risks of developing working conditions which are below the standards in the countries. Another risk, particularly in the UK, concerns the widespread use of private agencies supporting disabled people in their employer role, but often for a price that reduces the care workers’ wages significantly. Both disabled people and care workers are vulnerable groups under such circumstances.

What I am trying to say is that empowerment for disabled people is not only a disability project, but also still – and maybe even more now due to the new groups of workers – a care work issue, including its new changes. Care work is increasingly globalized: labour markets are no longer restricted to localities or countries. New world wide job seeker web sites have been established and the rapid development of technology makes it possible to keep in contact with families in the home country. Including these changes into the discussion requires paying attention to the ways migrant care workers themselves handle their work situation as part of their life processes. The life history perspective offers an option for understanding this as an ongoing process of making decisions balancing individual preferences, structural conditions set by immigration policies and the way in which the welfare scheme is implemented, as well as the concrete interactions with disabled people about the assistance they need and want to control in their everyday lives. Without knowledge of the care worker side future discussions on how to empower disabled people will lack insight and discernment. These future discussions will benefit from opening the discussion borders between disability and care work.