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

It 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.

Autonomy of academic research is a value that I do not wish to question. However, disability and impairment are inevitably normative phenomena that are defined by social, cultural and ethical norms. So, in order to do justice to the phenomenon, and to the lived experiences of disability, scholars should acknowledge the normative dimension related to disability.

Oppression, for example, is wrong, it is a bad thing, and if we are to understand it properly, a mere description of oppressive policies and social arrangements doesn’t explain it sufficiently. In order to understand oppression properly, we need a normative examination of the wrong that it consists of. In other words, if the oppression of disabled people is to be understood in a way that does justice to the phenomenon, we need to analyse in depth what are the moral wrongs and social injustices related to disabled people’s oppression.

When engaging with normativity, scholars need to have a proper understanding of both the subjective experiences of disabled people, and also the political aims and strategies of disability movements. Disability activists have often been sceptical about the uses of research because they have felt that our work hasn’t been informed properly by the concerns of disabled people themselves. And concerns are something disabled people do have at the moment, especially worries having to do with the economic hardships the West is going through.

Economic arguments are used widely to cut the services and benefits that have enabled disabled people’s social participation and well-being. For example, here in Finland the government lately came to a decision about an experiment that will last until 2015 – an experiment that governs the building of new houses, and governs accessibility in housing. According to this resolution, apartments only on the two lower floors of new apartment buildings should be accessible.

This decision signals, among other things, that disabled people or people with any kind of mobility impairments don’t really need apartments with a view. These kinds of decisions create a clear division between people in upstairs and downstairs – just like in the English country houses in the turn of the 19^th and 20^th century. In other words, the government here in Finland has decided to go back in time, and created a sort of postmodern Downton Abbey housing system where people are symbolically, but very clearly, showed what exactly is their place, and what is their value as human beings in the eyes of the establishment.

Oppressive political decisions, ideologies and values must be confronted and challenged by the means of political activism, but also by the means of independent and politically engaged academic research. This implies the need for collaboration between activists and academics, where both parties benignly aim to understand and value each other’s efforts. Activists, let alone academics shouldn’t be the masters of disabled people simply because disabled people should be their own masters. But academics and activists can be good servants, especially if they bother to listen to each other, and cooperate.