Contemporary feminist pragmatists have, in a fairly recent anthology (eds Hamington & Bardwell-Jones, 2012), omitted to mention disability and illness in any form. When I wrote my contribution for this anthology, I drew on findings derived from my ‘normal’ research pertaining to organisational development . Three years on, revisiting my own philosophical starting points or even framework, this wellspring of sharp thought and analysis fills me with wonder as to one glaring absence. Nowhere does it mention illness or disability with regard to full citizenship or impact on social and political participation and action-taking. As John Kaag puts it in his review of said anthology ”Contemporary feminist pragmatism arose as a unique philosophical identity in the 1990s, preserved by specific communities, in the face of marginalizing forces.” (Kaag, 2012). Race, class, border communities, epistemic exclusion, political practice as an analysis of women’s role in society all fail to mention disability and illness, let alone women (of any creed, colour, race, age, etc) with chronic illness and disability. There is talk of a feminist ethics of care but nowhere can I see traces of the sort of feminist pragmatism that gives even the slightest hint as to the existence of marginalisation due to illness and disability.

I am strangely comforted to read Kaag’s review of my chapter, e.g. ”Gillberg suggests that feminist action research is a way of expanding pragmatism’s scope of inquiry” (Kaag, 2012). He goes on to quote from my chapter ” it is a form of experimental method that focuses on the consequences of a researcher’s direct actions on a participatory community in order to improve the performance of said community or to ameliorate a problem that its members are experiencing.” Kaag also reminds me that ”..additionally, she articulates the goal of feminist action research as combatting the ‘bureaucratization and simplification” of knowledge claims’”. (in Hamington & Bardwell-Jones, 2012, p. 233).

It is at this point that I nearly forgive myself for having written and published from a (former) extremely privileged position as I staunchly rejected flimsy knowledge claims. Still, I cringe at my miserable failure to address pressing issues of exclusion from the political, social, and, generally speaking, public sphere due to illness and disability. After years of neglect by the medical, scientific, and political establishment I am at the edge of an intellctual abyss, forced to criticise myself and others for having enjoyed so much privilege without the slightest idea about the lived experience of those who cannot speak out about disconnectedness, let alone be heard if they did or do. My abysmal attempt at reframing feminist pragmatism would now have to focus the concrete problems and the formation of knowledge and values through lived experiences of illness and disability. I would still draw heavily on the idea of full citizenship expressed in the possibilities of action-taking that aims at political change. In the face of marginalising forces (cf Kaag, 2012) and the reality of science and medicine failing large numbers of citizens, leaving a dangerous knovlwedge vacuum, what exactly do feminist pragmatism and feminist action research have to offer?

I have been doing my utmost (which, often, amounts to a minor, rather pitiful ‘action’ such as writing a letter of complaint that will, at most, receive a polite generic reply with an empty promise to look into whatever the problem was that I tried to address) to battle the bureaucratisation of knowledge but, most of all, the simplification of knowledge claims over the past few years, experiencing directly the urgency for natural and social scientists to collaborate, to collate research findings and analyses of such findings, and to discuss. The few minor collaborative attempts had to be done exlusively online, without being able to meet physically, organise conferences, workshops or give talks and disseminate the knowledge formation I have been part of by using platforms to which able-bodied or healthy academics enjoy access. No able-bodied scholar (read: former colleague) let alone new-found ones has ever even attempted to visit me at home on my terms, my ill body and existence appear to deter anyone I have ever known in a professional capacity (barring one brave former student with whom I am currently co-authoring a narrative analysis of her professional life as a preschool teacher, but that is another story altogether).

Alas, in order to achieve any form of change, (political) collaboration is key, but most healthy people can only be fleetingly reached through social media. Those academics who do use social media as a means of communication have so far not offered me any form of collaboration in so-called real life, in fact, I might have been alienating them with my rather challenging new insights and specific knowledge I do have to offer.

Is it foolish or admirable of me to keep writing blog posts such as this one? The question is relevant in that illness and disability keep proving too off-putting a subject. Yet, without collaboration between the scientific community, medicine, clinicians, media, patients, politicians and many more – no change.

The dissemination of knowledge based on the lived experiences of people spending their lives in obscurity and with hardly any possibilities or opportunities to make themselves seen and heard are the realities of the perpetual, intricate marginalisation of ill and disabled people. To break this marginalisation (for instance by creating powerful interfaces) remains deeply problematic as it requires several parties willing to participate; even if such a collaboration came about at long last, would it be possible to create circumstances that allow ill people to teach healthy people about their lived experiences on their own terms and without a trace of condescension? My own epistemic validity claims among which I have always held reciprocity in particularly high esteem have so far failed me. Not many want to know what chronically ill people know. To hear, let alone act upon, what ill people say is beyond the capacity of most, it seems. So, how can social and political participation and collaboration towards change be achieved when the knowledge that is on offer appears to hold no value or interest for the parties that are required for a productive collaboration? Chronic illness and disability are subjects healthy people wish to steer clear of and I admit that a part of me understands this. But, as Kaag pointed out, one of the strengths of my chapter is my argument in favour of an expansion of the scope of inquiry, a reminder for which I am grateful. Let us think about how we can, together, ill or healthy, expand the scope of inquiry and at the same time move away from unsafe knowledge claims made in paradigms that have done nothing towards breaking ill people’s marginalisation.

I would think it wise if pragmatist philosophers, especially feminist pragmatist philosophers, again concerned themselves more with ethically sustainable actions that are necessary in conjunction with the identification of social problems. Marginalising should be seen as a result of unchallenged knowledge claims within paradigms where unsafe and flimsy knowledge claims are made. I would argue that feminist pragmatism should leave philosophical musings about ‘the mind’ that constitute, cause, perpetuate and cement deeply problematic ethical and practical issues for sick and disabled people, aside, instead concentrating on the moral and ethical obligation to focus its intellectual faculties on ‘reweaving the social fabric’ (cf  Haddock Seigfried, 1996).

References

Seigfried, Charlene H, Pragmatism and Feminism Reweaving the Social Fabric, The University of Chicago Press, 1996