In disability studies, research is tightly intertwined with politics and morality. The field has, to quote Carol Thomas, ‘social oppresssion as its analytical signature’. Disability studies is characterized by a twofold critical commitment; to investigate oppression and exclusion, and to contribute to empowering and inclusive processes in our society.
This commitment has produced several turns and debates in the history of disability studies, dealing with paradigms like ’emancipatory research’, ‘standpoint epistemology’ and many others. Without discussing them in detail, it seems clear that disability studies is committed to two different norms:
- Norm 1: Disability studies should analyze exclusion and disabling processes.
- Norm 2: Disability studies should, as social practice, in itself be a form of inclusion.
Since these are moral foundations , there are in a sense absolute and utopical. Properly understood, they commit disability studies to give the best possible analyses, within the most inclusive research process imaginable. If these principles should prove fully compatible, it would make doing a disability studies a simpler task than any other task imaginable.
If disability scholars wish to maximize norm 1 – attempting to give the best possible (that is the most analytically valuable) analysis of disabling processes – we must be willing to actively cause pain to disabled people and/or overrule their NGO representatives. Or, the other way round: If disability scholars wish to maximize norm 2 – by de facto carrying out the most inclusive research practice we can imagine – we must be willing to make analytical choices that will reduce the analytical power of our understandings of disabling processes.
This dilemma does not mean – of course – that analytical choices cannot be supported by both norm 1 and norm 2. One might hope that all pieces of research – while relating differently to the two norms – realize them equally in the long run. Furthermore, some have argued there exist reasonable compromises, such as (for instance) the possibility suggested by the concept of ‘user-led agendas’: to choose research areas on the basis of norm 1, and research design based on norm 2, or the other way round.
However, these deliberations indeed are compromises, not harmonious “solutions”. In my own research, for instance, I have dealt with strong and significant experiences in the lives of disabled teenagers and their parents. Given the disabling processes my participants face – in this case: particularly psycho-emotional disablism and cultural “silencing” of their experiences – it was important to the research design that their voices should be heard, both within the interviews and in the development of the project’s methodology. Nevertheless, it proved hard to determine (both for me and for the participants) if all the interviews were empowering: Telling stories of disabling processes, worries and complex emotions, does not necessarily engender happiness or reduce the effects of disabling processes.
Within the interviews, this posed a challenge when we touched upon subjects that were difficult to discuss, or stories that were painful to tell. Several times I had to ask myself: Should I (a) move on, as I sensed that the telling was painful and might reinforce the disabling processes that made it difficult or painful in the first place, or should I (b) continue the exploring together with the participant, in order to investigate (and possible dismantle) those disabling processes?
In the first instance, it seems very clear to me that I de facto chose to produce less valuable analyses than I could have produced. In the second instance, it seems clear to me that the data (and, consequently, my understanding of disabling processes) benefited from me choosing no to terminate the interview. On the other hand, it is naïve to feel certain that the lives of my participants in any way benefited from this choice. The relation between analysis and morality – or, to use “stronger” terminology: emancipatory insights and emancipatory research parctices – will necessarily become problematic.
For disability scholars, this should lead to painful rethinking and moral reflection, rather than politicized optimism, relaxing “common sense” or self-consoling benevolence. Our research designs are compromises: We do de facto accept that disability studies is regulated by at least two valid but incommensurable norms. We should acknowledge (1) that both are valid, (2) that these principles suggest (in principle) that we should either harm our participants or purposely produce weak analyses, and (3) that we never will be freed from the analytical and emotional pain that follows from this dilemma.