Collaboration and unwanted knowledge: revisiting feminist pragmatism

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).


Gillberg, Claudia, A Methodological Interpretation of Feminist Pragmatism. In Contemporary Feminist Pragmatism, Routledge, 2012 (eds Hamington, Maurice. & Bardwell-Jones Celia)
Hamington, Maurice and Bardwell-Jones, Ceila (eds.), Contemporary Feminist Pragmatism, Routledge, 2012
Kaag, John. Review (see inserted weblink), University of Massachusetts-Lowell, Notre Dame Philosophical Reviews, Electronic Journal, 2012

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

8 thoughts on “Collaboration and unwanted knowledge: revisiting feminist pragmatism

  1. schweitz75

    This really spoke to me, as a tenured professor who did get disability, but found all references to me on internet or elsewhere, as connected to the University, deleted. And no one ever visited me at home. (I had severe ME.)

    When I was first on Ampligen (experimental immune modulator) and well enough to give a coherent talk, but still in a wheelchair, I spoke at a feminist conference on the subject of the number of women suffering from invisible illnesses. After the talk, I was somewhat taken aback to find several female professors in the audience come up to me to tell me that they were hiding an invisible illness – serious rheumatoid arthritis, lupus, MS – afraid to “come out” in their departments.

    I think we need to get this subject on a panel at a professional (non-disease centered) conference …

    How you treat the sick and disabled is an “ought to” that used to be part of women’s culture.

    Liked by 1 person

  2. tipsforme

    The context of where knowledge is shared has a big influence on how seriously it is taken. For example, if my partner shares knowledge at a family event, people won’t even let her finish her sentence and assume to know more than she gained in her PhD and other research. If she speaks in a lecture everyone listens (or at least appears to!). This is interesting in terms of the restrictions your health places on modes of communication. I can just imagine that people dismiss you on social media in a way they just wouldn’t in a meeting face to face.

    I was thinking a while ago about how we can give our acquired knowledge more credibility. I wonder if a practical way of doing this could be online courses? I’ve discovered Coursera courses this year, which are a great way to learn if you have difficulty reading. One of the courses I’ve half done is aimed at medical doctors as CPD. Wouldn’t it be great if chronically ill people could create a course that medics (and others) did as part of their professional development? It could be partly awareness and accessibility focused but also a bit deeper about what we have learnt through chronic illness. This would require quite a lot of effort to setup but once the content existed it could be used over and over.


    1. Utting Wolff Post author

      Dear Jenny, Indeed. The Context of Knowing, which you are talking about, and the embodiment of knowledge do play a huge role in how knowledge is perceived, accepted or dismissed. However, this text is not about dismissal on social media but about a philosophical school of feminism, i.e. pragmatism, who made it its business over 100 years ago to proactively effect social change. The questions raised here pertain to the refusal to participate in knowledge production on the part of philosophical and critical thinkers, within the walls of academia (but with the power to influence knowledge production outside those walls), which is a very different problem from the one you are describing. That said, I have just been commissioned by my old university to design course modules that are going to be made mandatory for CPD from 2017 – on disability. So, five years on, my knocking on the fairly closed doors of academia as regards the inclusion of disability in philosophy and related disciplines is beginning to show results. It all takes so much longer than we need, doesn’t it.

      I am glad you’ve discovered online courses that suit you and like your idea of creating community-based courses for medical doctors. The problem you will encounter is the lack of a willingness to learn or participate but who knows. Change is possible, but it never comes in the form or shape we would like it to.

      Best, Claudia

      Liked by 1 person

      1. tipsforme

        That’s great news about the CPD course. I deliberately circumvented commenting on pragmatic feminism. I’m definitely a feminist but get confused over the different feminisms!


      2. Utting Wolff Post author

        Well, it was a discussion by and for (feminist) pragmatists philosophers in relation to a relatively recent publication that managed to exclude disability altogether from an otherwise very impressive anthology. It is an illustration of how, as someone else has expressed it, disability appears to be the Cinderella strand of exclusion. So where are the meaningful interfaces, how can knowledge participation become a possibility without intersecting spaces, without even an acknowledgment as to the existence of gaping holes in the fabric of knowledge, is what I’ve been asking. By presenting oneself physically, as I did after five years, of total absence. The moment I did materialise, change occurred (the blog post was written over a year ago, so it is ‘nice’ to be able to say something has marginally changed for the better).

        It was brave of you to comment 🙂

        Liked by 1 person

  3. Pingback: The Book On Transitions: Adventures Of Academic Publishing And Other Stories Or: Sidetracked By Crip Life | Utting-Wolff Spouts

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