Artworks, collective experience and claims for social justice: the case of women living with breast cancer

Introduction and background

There has been a growing public awareness of breast cancer over the past 30 years as a result of the creation of groups providing support, information and political direction for women sufferers. Breast cancer activism has become a fixture in the United States, Britain, and other countries. Not only has ‘funding for breast cancer research increased approximately fivefold between 1990 and 1997’ in the US, jumping for example, from over $550 million in 1996 to $700 million in 1999 (Braun 2003: 192, Lerner 2002: 227) but breast cancer activists have earned a role in determining research and funding priorities by among other things their mandatory inclusion on scientific review panels (Braun 2003, Lerner 2002). There are many reasons for this success: as with women's health movement strategies more generally, in the 1970s large numbers of women began to question why radical mastectomy was the standard therapy (Lerner 2002: 226); pharmaceutical, imaging and medical device industries enthusiastically supported breast cancer research because profits promised to be significant (Braun 2003: 192)¹; and convergence with a turn of some US biomedical scientists, eager for support for their research in the face of what they perceived to be a crisis of funding, towards the ‘democratisation of the scientific enterprise’ (Braun 2003: 192). Public awareness of breast cancer has provided both support and sustenance for women living with breast cancer, and the newly diagnosed, as well as making breast cancer a ‘frightening reality’ for women in general (Kaufert 1998).² Breast cancer activism has transformed the image of the woman with breast cancer from that of tragic victim – a sufferer in silence – to that of an angry participant demanding attention (Batt 1994, Butler and Rosenblum 1993, Lorde 1980, Potts 2000a). From being a few isolated voices of resistance to the role in which medicine cast women as patients with disease, a pressure group has emerged that has shaped breast cancer as a symptom of people's relationship to the modern world.

Given this development, it is not surprising that medical sociologists have begun to examine the role of the breast cancer movement as a crucible of health knowledge and health practices. In a recent article, Brown and colleagues (2004) point to the ways that the environmental breast cancer movement has constructed what they term ‘a politicised collective illness identity’ through transforming individual illness experience, critiquing medicine's treatment of women patients, and turning attention away from women's bodies as sites of risk to the environment in which they live. They conclude that the environmental breast cancer movement is one among many embodied health movements (EHMs) that both feed off the growing public awareness of health and also contribute to that awareness. Part of the success of embodied health movements is in being linked to other social movements, such as those concerned with the environment, gay rights and not least, feminism. Sometimes health has been used as a frame or ‘metaphorical object’ for these other grievances (Herzlich 1995: 164). Health in general has become a collective affair, and EHMs in particular assert the legitimacy of their own voices.

Like other health social movements, embodied health movements attempt to influence the very authorities that are felt to be oppressive or unjust – medicine and the political order – in order to divert funds, redirect research efforts or expand informational and care facilities for those who are afflicted with the particular disease. Brown et al. (2004) focus on this aspect in their evaluation of EHMs, so that they make mention of federal research dollars, access to health information and to differential health outcomes as key indicators of success. Their analysis leads towards conclusions that hinge upon the conditions promoting the likelihood of EHMs being recognised by scientific and health professionals, and the characteristics of different diseases and sufferers that might promote this recognition.

What distinguishes embodied health movements from other health social movements is ‘that activists frame their organising efforts and critique of the system through a personal awareness and understanding of their experience’ (Brown and Zavestoski 2004: 682). This other frame introduces their subjective experience into debates about prevention and treatment. Amongst other strategies, the many illness narratives that have been written by women patients are powerful tools that ‘transform the individual illness experience into a politicised collective illness identity’ (Brown et al. 2004: 68). This aspect of ‘voice’, unlike the first, is not directed solely towards science and medicine but has its aim in sharing experience and in raising consciousness among group members. It does not speak in terms of federal money but in the language of embodied experience. The effectiveness of EHMs involves both their ability to mobilise with respect to other movements and to capture the ear of medical authorities; the legitimacy of the cause also rests upon the ways in which the group can articulate the grounds of its identity. In essence, the question remains – what forms of transformation (mediation) are available to ill people, and how might they deploy these?

In this paper we take up one particular – and until now overlooked – form of transforming individual illness experiences into collective identity, the making of art objects by women with breast cancer. Visual art (which is our focus) is but one medium where this takes place. Others include the internet, where women with breast cancer share experiences and also try to help other women prevent themselves from falling ill (Pitts 2004, Sharf 1997); public spaces where women organise races, walks and toxic touring events that ‘. . . produce and transform the emotions that create solidarity and strengthen participation’ in collective action (Klawiter 2000: 69); the circulation among women's groups of films which address issues to do with mastectomy, family and sexual relationships (Butler and Rosenblum 1993, Cartwright 1998, Onwura 1991); and science education projects ‘initiated and designed by activists working with experts (Braun 2003).

Making breast cancer public involves making breast cancer visible, something designed to breach the cultural cloak that has lain over both cancer generally and breast cancer in particular. The making visible of this disease, its consequences and its context, has been achieved by what Klawiter (2000), following Swidler (1986) has called ‘ritual practices’ that lead to a political vision anchored in a set of interpretations of women's bodies.

The use of visual images showing women's bodies bearing the scars of mastectomy has been a rallying point in different contexts. Klawiter describes how, in one demonstration in San Francisco, women held high exhibits of photographs of women's nude torsos, including ‘startling images of disfigured women with double mastectomies’ (2000: 85). In another walk in support of breast cancer action one woman (‘an exhibitionist’) wore a dress with one half pulled down at the front to reveal the evidence of her breast cancer history. Another woman – seeing this – removed her shirt to show the asymmetry of her chest. Klawiter interprets this as ‘a practice of participation that works on and through bodies’ (2000: 88). This practice – a movement from ‘below’ rather than from the ideology of institutions – involves social relations, discourses and regulatory actions, which together constitute a change in what Klawiter (2004) calls the disease regime of breast cancer. Although disease regimes are relatively structured and stable, they are subject to a wide variety of cross-cutting pressures (Klawiter 2004: 850). As she argues, some social movements (and breast cancer is one) ‘achieve their greatest impact in the cultural arena, through changing popular images, ideas, emotions and identities’ (Klawiter 2004: 851). As part of this, visual images are key in rendering visible and collective the shared experience of being a woman with breast cancer.

This examination of practices surrounding the use of images means that we are dealing here with representations of suffering as well as with representations of being women with breast cancer. Some of these images are more durable than others. An early example of this is poet Deena Metzger's ‘The Warrior’, (photograph 1977 by Hella Hammid, also known as ‘Tree Poster’, designed by Sheila Levrant de Bretteville), which has been reproduced in more than twenty publications, including the feminist health ‘bible’Our Bodies, Ourselves, as well as in postcards, and posters, and the world wide web (http://www.deenametzger.com/) (see Sharf 1995). In this black and white photograph, Metzger is standing outside, shot from below so that viewers look up at her nude torso. Her face is in profile, looking up, smiling, towards the sky. Her arms are outstretched against the sky behind and above her, openly showing her bare chest. Her right breast is missing. The photo is cropped at hip level. A tattoo of a tree branch covers her scar, running from her armpit almost to the centre of her chest. This tattoo includes grape leaves on a vine, the Book of Life, and a bird (Van Schaick 1998). Metzer's image invites the world to look and to see a one-breasted woman, and other one-breasted women to see ‘The Warrior.’

A more recent example is the use of the model Matuschka's self-portrait, ‘Beauty Out of Damage,’ showing her mastectomy scar, on the cover of the New York Times Magazine (August 15, 1993). This picture struck a powerful chord with readers at the time, even though it was controversial. This is because visual images of women with mastectomies draw upon different representations of race, age and social class. Even as Matuschka ‘reclaim[ed] the scar as an object of aesthetic and political significance and, more profoundly, as an object of fascination, if not beauty’ (Cartwright 1998: 128), her white, youthful and sophisticated appearance actually inhibited her acceptance by many women. What made her image a public icon of breast cancer was her role as conventional model, art photographer and activist-by-default. Ways of framing breast cancer draw upon different and sometimes contradictory frames relating to gender equality, to sexuality or to family (Kolker 2004). The point here is that meaning is made with visual portrayals, and their meaning as public images is then re-made in the course of being taken up within social practices.

We argue that visual images are important for their anchoring potential in social practices surrounding breast cancer. By ‘anchoring’ we adopt Swidler's (2001) terminology to mean establishing the significance of practices, or to make some practices endure more than others. This issue is raised in the context of the claim that the establishment of new social practices requires ‘the visible, public enactment of new patterns so that “everyone can see” that everyone else has seen that things have changed’ (Swidler 2001: 87). In the case of the breast cancer movement this mutual seeing also involves a mutual showing. The role of visual images in this is important as a way in which women can recognise the issues in which the movement is grounded and might use these images to formulate and share collective aims. Susan Sontag makes this point in relation to photographs, which she says, ‘lay down routes of reference and serve as totems of causes: sentiment is more likely to crystallise around a photograph than around a verbal slogan’ (Sontag 2003: 76).

Visual images, however, are not ‘simply’ important for their anchoring potential in social practices surrounding breast cancer. They are also important because telling one's own experience – whether in words or pictures – remains a central source of social support. The emergence of an elaborated political agenda does not obviate the continuing need for women to give and receive support at the local level, nor for them to tell their story time and time again. Making art is a survival strategy and thus artworks need to ‘do their work’ time and time again for this to be possible. Thus, visual images and other artworks are potentially rich in their significations, exemplifying ideas at a number of levels at one time. This happens in ways that invite, command, or challenge the gaze of the viewer. Because visual images command attention they can define a shared space of viewing. This is important because, ‘the main function of public spaces is that of rendering visible and collective the questions raised by [social] movements’ (Klawiter 2000: 63, quoting Melucci). If this is so, then images of women with breast cancer, including those made by women with breast cancer, have the capacity to do a special kind of work in furthering the cause.³

Artworks and sociological analysis

How can one examine adequately the role of artworks in the promotion of a collective identity without examining the images and their production? Our answer to this question is that one cannot; and, moreover, that there is very good reason to take the form of artworks seriously. Works of art reflect choices made by artists ‘in a complicated social context, in an organised world of artistic activity which constrains the range of choices and provides motives for making one or another of them’ (Becker 2003). Consumers of a work also share in art's production. A sociological analysis of that world can tell a lot about what the artist ‘did, why they did it that way, and what the likely effect on audiences with a particular training and background might be’ (Becker 2003). According to Howard Becker, sociologists do not ordinarily give attention to works of art in this way because it takes an enormously detailed knowledge of the works and of the context in which they are made and because sociologists are ordinarily not interested in individual cases but in kinds of behaviour that happen repeatedly, connoting ‘regularity, durability, and predictability (Becker 2003). We agree with Becker that even though sociologists do not ordinarily do this kind of work, it can be done sociologically, and, further, that by giving attention to particular works of art we can see how artists and audiences produce – among other things – an embodied health movement of breast cancer activism.

For sociology, the question then becomes more than a description of the historical conditions under which aesthetics is given social form. It also concerns the ways in which ill people employ art forms to problematise their situations. How they do this – the ways that art forms symbolise – demands attention in terms particular to this kind of mediation. In sociology, there is a tradition of interpretation that has extended, in the sphere of illness, to narratives of experience. These too, have an aesthetic dimension, relating to the sensuous, embodied nature of illness, and their understanding hinges on how they are ‘told’ as well as what they ‘tell’ (Bell 2002, Radley 1999, Riessman 1993).

Seen as autobiographical case studies, illness narratives share important features with the case study in general. They set out particulars that communicate significant meaning, some exhibited rather than specified. In this way verbal statements as well as actions convey meanings by allusion rather than by denotation, creating the conditions for imagining what cannot be stated propositionally (Radley and Chamberlain 2001). How cases ‘mean’ is necessarily tied up with the form of their presentation. The case may then appear as the product of the research process, as something made possible only by the constructions of the investigator. In an important sense a case is an exemplar that ‘goes to show’ something about the class to which it and other members belong (Mishler 1990).

Applied to artworks, this commentary suggests that we treat images as cases within the context of illness experience. This requires that we describe them, in order to exhibit features that can be brought under critical analysis. This requirement should not be confused with art criticism or with the analysis of photographic technique. Instead, we are attempting to take seriously the form of mediation that has been shown to be of importance in the establishment of a sense of solidarity among women with breast cancer.

Works of art as ‘works of illness’

Consistent with the focus upon practice rather than institutions we concur with Becker (1998) that photographs (and by implication all artworks) are made meaningful in terms of what people do with them, a matter of practice and context. The idea of context extends to the sphere of production, so that what is also important are the practices that support, invite or help to make valid the claims of a work. A woman writing an account of her breast cancer or putting photographs of herself on the web today does so in the context of a public understanding of the disease that simply was not there 30 years ago, and in terms of an image-making system that offers possibilities for collective expression that is still unfolding (Potts 2000b, Wilkinson and Kitzinger 1994).

As sociologists, we are less concerned here with a definition of art than we are with the capacity of a fabricated work to be shown, shared, re-collected together and shown again. In relation to this, Scarry (1985) has pointed out that it is the material aspect of artworks that give them the capacity to be sharable:

Artworks foster the re-working of images across modalities so that an idea from a photograph can be articulated in narrative form or can be realised in a puppet figure carried at a parade (Klawiter 2000). Or alternatively, advertising posters can be utilised as a vehicle for the publication of images of women with mastectomy as a way of re-framing the breast in public attention (Breast Cancer Fund 2000).

The power of artworks relating to illness lies not only in their providing a clear political message (in spite of the fact that some do this) but also in portraying meaning in an expressive way. This relies upon the mediation in terms of which viewers apprehend practices and experiences that cannot be depicted as objects, but whose significant features can be portrayed in expressive form (Radley 1999, 2002). Understanding further how this form is produced, apprehended and shared is one of the tasks of this paper because the aim of illness representation is not merely to share, crucial as this might be, but also to stipulate that this is what illness is like for me, that this is how it happened, and that this is important to tell others (Sontag 2003). Artworks in this context do not just show how things are: they show what should be the focus of concern, either for fellow sufferers or for the public in general. Authors who narrate their experience in written form also share this concern. In the Wounded Storyteller Arthur Frank (1995) discusses the case of a woman who told her story because she wanted other people and health professionals to look at her. He makes the point that this word is important because the witness of suffering must be seen as a whole body, because embodiment is the ‘essence of witness’ (1995: 142).

In the main body of this paper we consider examples of the work of two artists, British photographer Jo Spence, who lived with breast cancer from 1982 until she died in 1992 and Martha Hall, an American who made artist's books about her breast cancer from 1993 until her death in 2003. They worked at different periods in the emergence of the breast cancer movements – Spence in Britain during the 1980s, Hall in the US during the 1990s. In the 1970s and 1980s women's health movements in Britain and the US were energetically and successfully contesting problems faced by women as consumers of healthcare, especially with regard to reproductive health (Doyal 1994). One study estimated that by the early 1970s ‘there were at least one thousand organizations directly involving women in various forms of health activism’ in the US (Morgen 2002: 70).⁴ At the same time, even by the early 1980s, ‘almost no one had heard of breast cancer support groups and there was no breast cancer movement’ (Brenner 2000: 325). For the most part, until the 1990s breast cancer activism consisted of small, narrowly targeted and fleeting mobilisations, fed by ideologies, networks, and organisations of pre-existing social movements (Klawiter 2004: 846). By the 1990s, the scale and scope of breast cancer activism had changed, consisting of multiple organisations, discourses and cognitive frameworks (Klawiter 2004: 847). Jo Spence worked largely in the absence of any organised breast cancer movement, even though she was very much engaged in both women's health and disability rights matters (Spence 1988, 1992). Martha Hall, in contrast to Spence, worked in the context of social groupings that articulated a shared ideology about this disease.

From the work of Jo Spence we select two photographs and from the work of Martha Hall two artist's books. Jo Spence produced photographs, most of them collaboratively. Like other feminist artists of the 1970s, Spence used her experiences and her body to unmask the everyday, normalised, institutionalised practices and codes of photography that represent gender, family, and the female body. She believed that photographs (like identities) are never finished, but should always provoke debate, encourage action, and direct viewers toward situations that exist outside the photographic frame. Martha Hall made artist's books, a genre that emerged in the context of the anti-establishment, democratic social movements of the 1960s (Bell 2006, Drucker 1995). Whereas Spence repeatedly made her body visible in her photographs, Hall solved ‘dilemmas of visibility’ by not offering her body to sight in her artist's books (see Grigsby 1991).

From what has been said above, it should be clear that we wish to discuss these works in their role as potential ‘anchor points’ in the practices of the breast cancer movement as well as strategies for living with breast cancer. We focus on multiple types of ‘work’ that these artworks do – for the artists, viewers, disease regimes, social movements, relationships of individuals to social institutions, survival. In terms of a sociological approach artworks should be considered as makers of meaning, which implies that mediation in this context is not a passive medium but a discursive production; meaning is made with, not through them (Watney 1987). Artworks are particularly apposite as objects to be discussed in relation to Klawiter's (2000) proposal that sociologists of illness should study practices rather than relationships between institutions, social classes or gender as established entities. That is why we do not discuss the breast cancer movement as an established grouping here, but rather the potential for the continuing, re-current and fragmented appropriation of artworks in the furtherance of two of its aims. One concerns raising public consciousness and changing the framework of thinking about breast cancer (Klawiter's ‘regime of disease’); the other is the local use of these works to sustain and return to focus the meaning of what it means to be ‘a woman living with breast cancer’.

Showing breast cancer – the photography of Jo Spence

Jo Spence was diagnosed with breast cancer at the age of 48 during a routine check-up. Although her surgeon wanted to treat her with a mastectomy followed by radiation, she chose to have a lumpectomy followed by traditional Chinese medicine, ‘in defiance of the medical orthodoxy’ (Spence 1988: 152). After the lumpectomy, her regimen included changing her diet, taking vitamins, herbs and mineral supplements, having twice-weekly sessions of acupuncture, and monitoring her stress levels (Spence 1988: 154). She had a recurrence of breast cancer 18 months after the lumpectomy, but was able to stabilise it naturopathically until 1990 when her breast cancer recurred and she developed leukaemia (Spence 1995: 26, 222). By 1992 she became increasingly ill and unable to work. She married David Roberts before being admitted to a hospice, where she died in June 1992.

Spence's photographs gained critical attention in the 1970s, and she was already a recognised artist when she developed breast cancer (Bell 2006). After she was diagnosed with breast cancer she exercised her right to use her camera in medical settings, not only to document, but to demand attention from her physicians (Spence 1988). In her photographs of illness, Spence contested ‘the power of Western science and medicine to fragment lived experience, to reduce people to bodies, and to create passive patients’ (Bell 2002: 12). She used her camera as a weapon to be symbolically violent back to medicine (Spence and Coward 1986).

‘I framed my breast for posterity’ Jo Spence 1982. Courtesy of Terry Dennett, The Jo Spence Memorial Archive, London.

The colour image reproduced here is titled ‘I framed my breast for posterity’. It is selected from many produced by Spence over the course of her illness and in the period of remission (for background to Spence's work as a photographer see Bell 2002, Dykstra 1995, Roberts 1998). We chose this image for two main reasons, one concerning its form and the other its context of production. Spence herself selected it as being exemplary of the form that ‘a photograph for the sick’ might take and gave it its title (Dennett 2001). This exemplification refers to the way that the image is constructed, in effect, the way that illness is mediated in the picture. It allows us, as commentators, to articulate more clearly the potential of visual artworks such as this one for re-defining breast cancer and illness in general.

Spence made the photograph collaboratively with her partner Terry Dennett the night before going into hospital for surgery in 1982. Spence is naked from the waist up, except for a string of wooden beads. On the underside of her left breast is a bandage. The beads and bandage mark (colonise) her body and connect this photograph to a pair of photographs titled ‘Colonization’ that she and Dennett had made earlier that year, before her diagnosis of breast cancer (Spence 1988: 124–5). To the left of her head is a black and white poster of a group of British mineworkers, who were engaged in collective action at the time. Below the poster is a fireplace, with a fire burning in the grate. On the mantelpiece are an alarm clock, a tin mug, and a greeting card. To the right of Spence and partially covering the wall is a brown-coloured fabric screen, printed with large, bright red flowers, used to obscure a window from appearing in the picture.

This is a carefully composed photograph, more like a tableau, in the sense that it is posed, makes use of props and has been carefully lit from below (Dennett personal communication). This enhances its look – its shock. The photograph's effect comes from disrupting conventions in order to make signs work in a way that proposes authorship (‘there is a message here’). As Roberts (1998) points out, the staged image allowed Spence to include the speaking subject. The viewer of this picture – knowing only that the model is also the woman who has breast cancer – is challenged to supply a voice for the person pictured, in effect to narrate the picture and to articulate the sign. That narrative (or the ones Spence supplied in her writings to accompany her photographs) constructs the experience of breast cancer in a way that challenges the accepted view of being a breast cancer patient, a passive victim of disease.

In the photograph, Spence is holding a picture frame in front of her left breast and thus inviting consideration of what is inside and outside the frame. The frame sets her breast (and her cancer) off from Spence's earlier life. Yet inside the frame the beads she is wearing provide a connection to her earlier life, when she was a photographer who did not have cancer, and when she took a photograph of herself wearing these same beads (Spence 1988). The photograph searches for ways to connect her experiences of patienthood with her experiences as a photographer and with her working class politics. The photograph thus seeks to bring together Spence's experiences of breast cancer with the politics of medicine in the context of alienated labour and industrial capitalism (Dennett, p.c.).

To view and to talk about this photograph is therefore to engage in a co-construction of an ideological position, an approach that Spence deliberately adopted. This is where easily recognisable elements can be juxtaposed in non-naturalistic ways so as to subvert the way that institutions (such as medicine) ‘efface their own structures of power within representation’ (Spence 1986: 177). For Spence the sign was primarily the arena of an ideological struggle, and the adoption of what she and Dennett called ‘the intruder technique’ was specifically aimed at disturbance, provocation, rebellion and a witnessing of the shortcomings of medicine within capitalist society (Dennett 2001). However, as is revealed in the picture's subject matter (her breast cancer) the sign was also the site of an intensely personal struggle.

While the juxtaposition of the two signs allowed for the production of powerful images, it is important not to read Spence's later accounts of struggle at the personal level as diminishing the claim that her pictures were ideological in design. From their moments of creation they invited a viewing (and reading) that is simultaneously personal as well as social and political. Whether they are read in this way depends of course upon context. Spence liked to tell the story of an exhibition of her illness photographs where nobody spoke to her all evening except for the woman who, at the end, asked about the green card she had used as a backing (Hevey 1992, Spence 1995). She contrasted this reception with those from people living with cancer, who would tell her of their relief at being able to talk about their experiences, including the effects of chemotherapy and other downsides of treatment that only patients would know. Her point was that what, in one context, made ‘bad art’ in another context made ‘brilliant information’. Our point is that Spence's photographs, to be sociologically relevant, need not wait to be turned into political icons by a breast cancer movement. An examination of the way that these images are subsequently deployed is insufficient. This is for the simple reason that they are already ideological; they already invite a collective challenge to the hegemony of medicine. While one cannot generalise across art works, this is sufficient basis for us to argue that a reclaiming of the context of production of artefacts is important for understanding the development of the breast cancer movement.

The frame in ‘I framed my breast for posterity’ covers Spence's mouth, inviting reflection on silence and speech. Spence was struggling to be heard by her surgeon so she could get the treatment she believed she needed. She was also struggling to be heard by other women, so that her experiences could be useful to them. She wanted them to know that they, like she, could think and act differently about breast cancer (Spence 1995: 214). As was the case with her earlier political work, she wanted to help create a community, this time a community of ‘dissident cancer patients’ (Spence 1995: 214).

If photographs such as this work before they are turned into political icons, then how does this happen? They work for other women, especially for those who already have breast cancer. In the context of breast cancer, the issue of recognition appears again and again in accounts from women sufferers discussing the bodies of other women, like themselves.

One example is given by Jackie Stacey who, though suffering from a different form of cancer (endodermal sinus tumour, a highly malignant tumour of the egg cell), tells the story of a meeting while recuperating on holiday after treatment. She had lost her eyebrows, eyelashes, and hair as a result of chemotherapy so that in consequence, as she put it, ‘certainly no one looked like me’. That is, until she saw coming towards her a young woman who also had that ‘uncannily naked look’. She reports that:

Stacey and the woman (who had been treated for the same form of cancer) did not speak but passed by each other, so that she returned home with a yearning, the ‘longing for the might-have-been of recognition’. Later on she introduced herself to this woman; they compared their illness experiences, so similar in many details that when Stacey returned to her apartment she says, ‘I wept with relief’. What is it that Stacey recognised with relief? We conjecture that it was herself-as-ill in the other woman, another whose existence produces the conditions for dialogue, a space in which to speak and also to listen. Face to face with the other, one's (self) appears. That breast cancer sufferers also look for this ‘other like me’ is suggested by Dorothy Broom (2001), whose hesitancy to walk around the changing room at her local swimming baths was premised upon the fact that she had never seen a woman there who had had a mastectomy. She concluded, ‘If women with breast surgery swim where I do, they must change in the cubicle or drive home in wet bathers’ (2001: 254).

How does this issue relate to the photograph shown above? By placing herself in the picture, her breasts exposed and displaying the marks of her biopsy, Spence invites this shock of recognition from fellow sufferers as well as engagement and self-reflection by those who have not (yet) been diagnosed with breast cancer (Bell 2002, 2006). The invitation is repeated for women with breast cancer in every exhibition attended and in every book opened in the years since this photograph was made. The power of the photograph remains in its multiple significations, one of which stems from its mimetic capacity. By this we mean that it makes possible, at one moment, the visibility of breast cancer as the common situation (the ‘likeness’) of women who are similarly afflicted. This is the message (though drawn from a different disease) that Jackie Stacey's story offers, one that links the portrayal of a single woman's experience to the apprehension of breast cancer as a cultural phenomenon. It can be seen more broadly in the photographs of Metzger, Matuschka and of other women marked by mastectomy that are used by activists of the breast cancer movement in public arenas.

This is not to say, however, that this recognition is inevitably met with a positive response. At the base of some of the critical responses to the Breast Cancer Fund's (2000) campaign (showing models with mastectomy scars), is that some sufferers recognise that they ‘look like that’, and reject it; or more importantly, they are horrified to think that ‘normal’ people will now know how they look. The possibility of looking at oneself in the mirror and not being horrified is a test – a point of transition – that many sufferers regard as significant (Radley 2002).

‘I framed my breast for posterity’ is a good example of Spence's response to her sense (accurate at the time) that there was a distressing absence of non-pathological images of breast cancer available, and an under-narrativisation about this disease from the point of view of the women who live with it (Roberts 1998: 205). Finding no images for what she wanted to say she had to create these out of her own pain and her own imagination, bringing these together through assembling signs where current ideologies of illness and treatment of disease could be contested. Her imagination was rooted in her experience of disease (as we see it on her body) and her pain was given voice in the authorship of the photographic assembly (Scarry 1985). As Roberts (1998) points out, Spence's work was not just an act of bravery or intellectual expediency but was also one of personal and political necessity. This necessity gave rise to a photograph that marked a turning point in her work, something that Spence recognised at the time (Dennett 2001). Though it continued her and Dennett's joint work in phototheatre (the fabrication of appearances), this image (it was one of three they took that evening) also introduced a new element, ‘phototherapy’, something that Spence would develop separately. In this context the term ‘phototherapy’ refers to the way that making work for others has benefits that go beyond what is sometimes thought of as ‘making the artist feel better’. Therapy, in this sense, extends to the reconstruction of signs in ways that are in the interests of all those who do not traditionally control the production of meanings about illness (see also Gray, Sinding and Fitch 2001). It is less about ‘saving one's life’ than about ‘staying alive’ (Spence 1995: 135).

Turning points and transitions – the artist's books of Martha Hall

Martha Hall, was 39 years old when in 1989, she discovered a lump in her breast. She had been married for 18 years and was the mother of two primary school-age daughters. The lump was malignant; she had a mastectomy followed by six months of chemotherapy. In 1993, Hall was diagnosed with a recurrence of breast cancer, hospitalised for three months, and treated with high dose chemotherapy, followed by a bone marrow transplant and radiation. In 1998, a recurrence of cancer in her neck was treated with radiation, but in 1999 she was diagnosed with metastatic breast cancer in her ribs, spine, skull and liver, for which she was treated with chemotherapies. She died in December 2003. Although Hall had written poetry and taught weaving for many years, it was after the recurrence of her breast cancer in 1993 that she began to make artist's books, completing her first one in 1996. Making the books brought to light emotions that Hall hadn't previously acknowledged and became a powerful part of the healing strategy she developed (Bell 2006).

Unlike Jo Spence, who claimed feminist and activist identities throughout her career, Martha Hall was a businesswoman and mother when she was diagnosed with breast cancer. As such, she had to cross over to a (transgressive) place that Jo Spence, as a result of her working class upbringing in the UK and her exposure to feminism, had occupied for most of her adult life. While there had emerged in the 1990s a discursive regime concerning breast cancer of which Hall was aware, this was not enough in itself to make her into an activist. One thing that was missing was a discursive repertoire to work with – in her case the skills of being able to make artist's books. The other thing needed would appear to be a ‘transformative event’, a critical moment in which she could see that she had to share her experiences with others and that she must do this by means of expressive forms that she could control – making art. This moment did not occur within organised breast cancer events, either through seeing iconic images of women with mastectomy scars or through meetings with other sufferers. It occurred at an artist's workshop.

Hall's chosen format, the artist's book, involves a mixing of media, so that she made the paper that would form the pages on which she wrote the words before putting it all together as a single volume. For that reason it is impossible to reproduce her work here, except to indicate with photographs what her books look like from the outside. This inability to make multiple copies of her work is important, not just because it limits its exposure but because it highlights a different way of opening a collective, discursive space in which ideologies of illness can be challenged.

‘Tattoo’ Martha Hall 1998. Photograph by Dennis Griggs. Courtesy of Alan Hall. From the collections of the George J. Mitchell Department of Special Collections and Archives, Bowdoin College.

Tattoo (November 1998) is a small square book (4³/₄″× 4³/₄″× 1″) that opens like a double-sided accordion, to 32″. It contains eight short stories written by Hall, each printed and illustrated with a simple rubber stamp or stencil. The cover is printed with coloured paper, in blue, black, and a bit of white. The linearity of this artist's book is deceptive, because it is a reconstruction narrative (Williams 1984) that retains the breaks in Hall's life wrought by her cancer.⁵ In eight stanzas (or stories) she sets out how she came to feel the need to speak out to other women about her cancer, and how this was premised upon recognition of difference. The sign that she deploys in different ways is the tattoo marks made on the breast (or elsewhere on the body) to aid in the administration of radiotherapy (National Cancer Institute 2005). Some women have chosen to mark themselves with tattoos after surgery for breast cancer. These tattoos become part of ‘the palimpsest of breast cancer’ that is written on their bodies (Langellier 2001: 145). The title of Hall's artist book, Tattoo, signals something, perhaps unfamiliar to outsiders, about the medical, social, and feminist worlds of breast cancer. A sewing needle is stuck into the cover of Tattoo, much as a needle might be temporarily stored when a sewing project is underway. This is not a needle that would be used in a tattoo studio. But this kind of needle connects the art of book making to the activities of sewing and cloth making. The sewing needle also echoes the tattoo's ‘stereotypic and stigmatising associations,’ in its suggestion of a makeshift tool for marking the body (Langellier 2001: 147). For Hall in her younger (healthy) days, tattoos were marks of otherness, of transgression. They signified things outside her white middle-class upbringing, something that made identification with women in general difficult, and also her acceptance of ideologies that kept her a passive victim of her disease.

At the physical turning of Tattoo Hall tells of an encounter through which she realizes that she must share her experiences of breast cancer with others. (At this point, the book must be turned over, so that the reader must make the turn with Hall, as she goes ‘from one side to the other’.) This formative experience happens at an artist's workshop.

Hall's telling of this story begins with an all-too-familiar rehearsal of racial prejudice and homophobia, and ends with its subversion.⁶‘Curious George’ is a friendly monkey in a US picture book series, known to generations of children and parents (Rey 1973). Hall writes about this meeting again in the ‘Artist's Statement’ for the catalogue of her exhibition Holding In, Holding On (Hall 2003). What she was holding in, she tells us, were her feelings, until she realised that she needed to share them with others. This realisation is made possible by what the man said to her concerning the time of his mother's death, words that do not appear in Tattoo itself. He said, simply ‘I wish I had thought to make art about it then’ (Hall 2003: 12).

The story-in-the-story is worth repeating here on two counts. First, it is exemplary of how visual images – in this instance tattoo marks – can become anchoring points. This is a central question for this paper. Second, the way it is told (with the book itself, something it is not possible to reproduce here) displays – re-presents for readers – the arrangement of signifiers that was disruptive of Hall's experience that day. The disruption comes from the unusual (for Hall) conjunction and contextualisation of signs in her meeting with the man, whose ‘transgressive’ features (his blackness, very tall size, being gay) were juxtaposed with his artistic ability, his beautiful voice, and his ‘Curious George’ tattoo. By the end of the meeting these signs have undergone a curious inversion, so that Hall now identifies herself with the transgressive, with the man who felt he should have ‘spoken out’ about breast cancer.

This unexpected juxtaposition of easily recognisable elements (spontaneous in the meeting, crafted in the book) is reminiscent of the conditions that Spence (1986) set out deliberately to reconstruct in her photographs. In both cases signifiers are re-presented so as to present afresh an ideological challenge to the status quo. It is in the re-arrangement of signs that Hall recognises herself as being more than a woman with breast cancer, but also a person with a responsibility to share her experiences with others through her art. The signs that are there in her meeting with the man are re-framed by the story he tells about his own mother's cancer, a characterisation in which, we argue, she recognises something of her own situation. We deduce that the role of ‘mother’ is important to Hall, sufficiently so that she begins her artist's statement in the exhibition catalogue with the words ‘The day before Mother's Day, 1989 . . . a surgeon I did not know phoned me . . .’ (Hall 2003: 10). This sign vehicle is important to aid in the recognition of another similarity, this time with the man's past failure to speak out on behalf of his mother and people like her (like Hall). This apprehension of a moment from the past in the sign constellation of the present figures her own sense of duty to speak out, and with that a radical transformation of the meaning of being the sort of person who has made, or makes upon themselves, a tattoo. What Hall makes of this, on reflection, is a re-identification of herself as an artist with breast cancer, a person with a message and a means to communicate it to others.

Tattoo is not just the story of this encounter, but also the record of other occasions where, for example, Hall meets some other women who pull down the front of their dresses to show their radiography tattoos. These are moments of recognition though not of revelation, as with the ‘Curious George’ incident. As a work of illness Tattoo portrays and sets out in textual, visual and tactile form a version of Hall's message about how she became an activist. Her work illuminates issues that have been raised at a cultural/theoretical level, concerning the difficulties of generating a community of breast cancer sufferers where women belong to different ethnic, class and age groupings (Cartwright 1998). In a world where existing social identifiers are dominant, images of women with breast cancer – drawn as they often are upon white, young, middleclass women – do not have universal resonance.⁷ And with respect to health ideologies that value appearance and youth, there are difficulties of positioning signifiers about breast cancer (showing mastectomy scars) that might frighten, shock or repulse. While the existence of the breast cancer movement provides a discursive regime where individual sufferers can feel supported, this does not remove from each of them the burden of making that transition from victim to activist, if indeed that is a transition they want to make. Speaking out might seem the ‘right’ and ‘healthy’ thing to do, but there are ambiguities and uncertainties surrounding going public either in print (Broom 2001, Stacey 1997) or in visual depiction (Alice 1996, Butler and Rosenblum, 1993). Some of these uncertainties are contained within the discursive frame that artists and authors arrange for themselves, so that something of their experience remains ‘local’ and resistant to being used in other ways, by other agencies (DiGiacomo 1992). The integrity of art works of whatever kind makes for possibilities for and constraints upon their use in the social sphere.

The social legacy: art works ‘keep alive’

The plain reality of life is that many women with breast cancer will die from this disease, including those who have been vociferous campaigners for the emancipation of suffering.⁸ To deny this – to remain at the cusp of thinking about the breast cancer movement's successful establishment – is to risk replacing one false positivity with another. The shift in focus as one addresses movements that gain political viability is from the vicissitudes of the sick body to the establishment of agendas and policies. In this section we ask, what role do artworks made by sufferers have in ‘keeping alive’ the experiences of the women who made them, and those for whom they were made? To do this we first address examples from the later works of Jo Spence and Martha Hall. These works are no less ideological, though they agitate from the edge of the discursive regimes that they help to create. This is because they are about a sense of impending death, and what this means in a world where public consciousness about health maintenance is raised at every opportunity. In a culture of ‘healthism’ discourses about death are inevitably muted.

From the Death Mask Series Jo Spence 1991. Courtesy Terry Dennett, Jo Spence Memorial Archive, London.

The first of the images reproduced in this part of the analysis is from a series The Final Project that Jo Spence created as a way of confronting her own mortality. Eight years after her first treatment for breast cancer she was diagnosed with leukaemia. This presented her with a new dilemma:

As Dennett (2001) reports, her illness gave her a gaunt, ‘victim’ appearance, unsuitable for portraying resistance to disease. Instead, Spence turned to indirect and allegorical methods (‘photofantasy’) that drew upon the Egyptian ‘Book of the Dead’ and rituals from the Mexican ‘Day of the Dead’. The image shown here is one of the Death Mask series (never completed) using a mask placed over skulls printed onto a cloth (Jo Spence in collaboration with Terry Dennett 1991). A purple mask, cheeks blushed red, fills (and exceeds) the frame in this photograph. The mask glows, set against a black background printed with vertical rows of identical white skeleton skulls. Light is reflected in patches on the nose, cheeks, and lips. There is no face behind the mask. Instead, part of a white skeleton's skull is visible through the bright red lips, slightly parted. Sharply defined brown eyebrows frame the eyes, through which two more seemingly identical white skeleton skulls can be seen. A skull can be seen, as well, through each of the nostrils. The mask served to preserve and yet modify identity, in a way that Spence hoped would both document her declining health and be a testimony to her work. In an interview near the end of her life she was clear that, while different, this work continued the same line of practice she had followed previously:

‘In whose interests’ was the Final Project created? Whom or what does it signify? One answer is that it speaks for women who are living with cancer in the knowledge that they are dying. From Audre Lorde (1980) onwards, the need to speak out against the ‘optimistic, chipper’ attitude of ‘healthism’ is underpinned by the fear of death from breast cancer (Batt 1994: 27). Spence's image from the Final Project is one further step in the felt urgency to name the unnameable, to give form to fear and pain through imagination.

In a similar vein Martha Hall produced artist's books until the end of her life, when she knew that she was probably soon to die of breast cancer. The image shown here is one of these, a book titled Jane, with Wings (January 2001), a square multi-layered folding structure, 6½″× 6½″× 1¹/₄″, of hand-made paper that incorporates hair, thread, and linen. The book's spare text is printed using an Inkjet printer. To read this book is, perhaps above all, to learn to handle it. Its outer covering is a box covered with textured and hand-printed paper. A black polished stone functions as a handle or ‘knob’ for lifting the red cover of the black box. The book is a series of nested pages, all with origami-like folding, some made of card, others made of tissue paper. The pages are dark red, black, or white. To read the words one has to handle the book very carefully, going deeper into the ‘origami’ folds so as not to tear the paper, unwrapping (not turning) the pages so as to read the words. What is important about this is that the reader/viewer comes to the stories in Hall's artist's books in terms of their material form as well as in terms of the words written down. These tactile requirements also signify as signs relating the reader to the author, the healthy to the sick. For Hall speaks in her work not only to other women living with breast cancer but also to those free of disease. As Hall (2003: 14) writes, ‘People may not want to “touch” the topics I explore in my books; yet the books invite handling, touching, interaction’.

The text of Jane, with Wings begins, ‘There is pattern in the darkness. . . .’, and in the subsequent pages asks ‘Do you see what you fear?’, and further on, ‘Close it away, the fear, close this page’ and then tells the reader ‘you are not the one who is dying’, so that the reader does not need to see more, to know more, as Hall must inevitably know. The power of the book is in the physical unfolding, in the contiguous relation of revealed pages of text that speak of closing, hiding and ultimately of difference. Delving into the centre of Jane, with Wings the reader is told that s/he is to close the book without knowing, without seeing.

Hall saw the themes of her books as universal, speaking she said, ‘to family, friends and strangers’; ‘to people living with the fear of dying in order to live, and leaving a legacy’ (Hall 2003: 15). She attempted in her lifetime to secure this legacy by placing her books in ‘public collections, particularly college libraries’ rather than in museums, so that people might hold and read them (Hall 2003: 12). Like Spence, Hall was concerned that her art products would go on working after she was dead.

‘Jane, with Wings’ Martha Hall 2001. Photograph by Dennis Griggs. Courtesy of Alan Hall. From the collections of the George J. Mitchell Department of Special Collections and Archives, Bowdoin College.

Death Mask and Jane, with Wings answer the question, ‘What do I have to do to survive?’ This is not a question for individuals only but an ideological issue, one that is central to a sociology aiming to understand illness representation as signifying practice. Artworks like these have things in common with illness narratives. At the end of her cultural study of cancer in the light of her own illness, Jackie Stacey (1997) posed the question of whether writing to remember is a form of forgetting (trauma) as well as being a restorative activity. She also said that the linearity of her writing might have some restorative effect upon the disjunctions wrought upon her body by illness. In consequence she asked, are single narratives, and all the narratives that become part of a shared narrative of cancer, a collective way of forgetting? We might ask a slightly different question from Stacey, that is, ‘what is the anchoring potential for these works of art?

Following Sontag (2003), we have said that collective experience is remembering in the service of stipulating. In that sense these later works of Hall and of Spence are not merely restorative, if by that is meant that they carry out narrative repair, providing a disease regime that ‘makes sense’ of breast cancer for the sufferer/artist. Rather, their works are also both disruptive and temporalising. By challenging the viewer to give voice to the signified these art works create discursive space. In addition, they also create a temporal potential, concretising their moment of production into the image of history. As Roberts says:

We have already given an example of this when considering Martha Hall's account of her meeting with the man at the artist's workshop. The similarity (in a mimetic sense) of his past failure and her present reluctance to speak out about breast cancer underlay the recovery of a redemptive whole (a ‘transgressive’ re-identification with others) that opened up her commitment to future collective action.

The value of considering such artworks as ‘works of illness’ is that they raise questions about the way that social movements emerge in the context of practices that make space and time, rather than simply occurring within them. To look at Spence's photographs and read Hall's books is to (begin to) comprehend what they have lost as individuals and in so doing to name the lost emancipatory potential of their past so as to realise what has to be achieved in the present. How is this managed, or to be managed in the light of the fact that these artefacts have particular forms, locations, media potentials? We turn to this issue in the final section below.

Spaces of appearance and discourse: re-presentations of illness experience

If one interprets the growth of the breast cancer movement as a set of ritual public practices, constituting a discourse or ‘regime of disease’ (Klawiter 2004), then what part might be played in this by the kinds of artworks we have discussed in this article? We put the question in this way because we have not undertaken a survey of the impact of these images and books on women with breast cancer or on healthy individuals. Instead, we have explored the potential of artworks in general through a discussion of chosen images and books, something nearer to a case analysis than to a survey (Radley and Chamberlain 2001). While it is relevant to know which images have become iconic to the movement in the media context, this does not tell us how such artworks ‘work’ in relation to sufferers who view them, or indeed about their context of production. Without regard to the latter we would be less able to comment upon the limits and possibilities of images being taken up by women from different social backgrounds. Put more positively, our purpose has been to argue for the recognition of material signs as an essential dimension to cultural practices surrounding breast cancer activism. This recognition demands that these signs be examined in terms other than that which grants them only the status of ‘the interpreted’, markers of difference relating to boundaries that have already been established. A reproduction of the photograph of Matuschka on a poster at a public rally is noteworthy, and its use important to understand. However, the work this image does in that context is not the work that it might do in other contexts and is not the work that other art products, such as Martha Hall's books, might achieve. This is not to say that any of these images are more or less disruptive than others, but that they are historically and socially situated, and that their potential both derives from and is limited by this fact.

We have said that one important potential for artworks (of any kind) is the creation of discursive space. In her analysis of what anchors social practices Swidler (2001) proposes that, as well as making publicly visible new patterns of action, these practices are likely to be at the centre of antagonistic social relationships. With regard to the context of production of the works considered in this paper, both artists are on record as saying that they remained, to the end, angry (Hall 2003, Spence 1995). We do not consider this anger as the motive for the creation of these works, but as being the subjective aspect (feeling) articulated with the photographs and books that these women produced. It is taken up in a social or collective response to the institutions of medicine and the discourse of illness that they signify. Relevant to this is Swidler's suggestion that antagonistic relationships are the locus for new practices. This is consistent with the view expressed earlier that ‘the collective interpretation of illness is made in terms which, in the strict sense of the wording, challenge society or the social order’ (Herzlich 1995: 160, emphasis in the original).

Spence's photographs and Hall's artist's books make use of both visibility and antagonism in their creation of space that retains these dual aspects. Drawing directly upon Benhabib's (1990) analysis of Hannah Arendt's writings, we can determine these as agonistic and discursive space respectively, both referring to the public realm. Discursive space is that where ‘freedom can appear’, where people together share ideas and values through speech so as to counter oppression and pain. Benhabib glosses this statement in an important way for our analysis, by saying that it is not a topographical space – one defined in terms of places or crowds – but a space defined in terms of ‘action in concert’ (1990: 194). By comparison, the space of appearances relates to what we have termed ‘making visible’, where moral and political signs are revealed, displayed and shared with others. It is also a space where signs compete to be seen, to invite and challenge the viewer. If as, Benhabib says, this space was important to the Romans and the Greeks as a ‘guarantee against the futility of individual life’, ‘promoting a relative permanence if not immortality for mortals’, then its existence is no less relevant today for individuals feeling isolated in living with cancer.

Benhabib goes on to explain that every public space has something of the agonistic and the discursive: they are not exclusive properties of action. But today the discursive is dominant because the struggle to make something public is always the struggle for justice, so that social movements articulate a world of rights rather than appearances, even though the former makes use of the latter to make its claims.

The emancipation of the sick – which is, at one level, what breast cancer activism represents – is no different in making use of both types of space. Photographs and artist's books have the power both to shock (to make visible) and to narrate (to engage discursively through sign manipulation). Neither of these aspects is reducible one to the other, so that, as Sontag writes:

The photographic images of Jo Spence and the artist's books of Martha Hall need to be understood in this light. However, they are also representative of all works (including illness narrative texts) that seek the emancipation of the patient through storytelling, in which a key element is the dramatic display of features that compel, either by showing (describing) the horrors of illness or the trials of treatment and recovery (Bell 1999, 2002, Radley 1999, 2002). This showing is important in relation to their existence as material objects, as artefacts that have semi-permanence yet can be copied, transported, or transformed to a greater or lesser degree.

At this point we are able to justify, in a way that does not rely upon extra-sociological criteria, our use of the term ‘artworks’ to describe the photographs and the books considered in this paper. One important feature is that artworks are ‘self-announcing’ (Scarry 1985), or infra-reflexive (Latour 1988) which is to say that they display the mediation though which they are made up. They direct attention to themselves (‘there is a message here’), so that the signified is known with the signs, not through them. Secondly, their work of re-presentation is aimed at engaging the viewer in order to bring before her the ideas and values that are mediated by the signs (Latour 1988). This is a way of ‘making present again’ a message that, showing the shortcomings of the past (the artist's illness experience), bears upon the ideological possibilities of the present and its possible futures. That is, the message is about the viewers/readers currently engaging the work, and what these individuals might do now. It is not just about the disease in general, or the fate of individuals who once shared their diagnosis.

These two features – one concerning infra-reflexivity, the other ‘making an idea present again’ through preserving the mediation – are consistent with art objects being made by and for women with breast cancer. Art products (like autobiographical narratives) can be thought of as ‘replicative machines’ that enable the re-creation of space that is visual and ideological, agonistic and antagonistic. Like illness narratives, they serve as testimonies that engage the viewer/reader as witness, a mode of work that, it has been noted, feminists (women working for and with women) often find enabling (Chaplin 1994).

These distinctions are useful as it gives us grounds to enquire which kinds of art objects are likely to be taken up by social movements (their anchoring potential), and to ask what residual potential they have to create public spaces for each new person who comes upon them.

Implications for understanding EHMs

Following their detailed analysis of embodied health movements, Brown et al. (2004) make some suggestions regarding the enabling conditions relating to the emergence of a strong movement. Among these are the group's links with other movements, knowledge of scientific medicine, and the characteristics of the disease condition and the social backgrounds of the individuals concerned. To these we would add the practices and forms of mediation that are available to the group in order that they can make visible their suffering and their cause. Among these are agonistic practices and aesthetic forms of objectification (artworks) that draw, in the case of women with breast cancer, upon shared suffering and intersubjective knowledge of the disease and its treatment. In their engagement with medicine as science and as the forum for patient rights, there are strong elements of emancipation, drawing upon issues of knowledge and justice to promote their cause. In their efforts to encourage solidarity among fellow sufferers and other women, however, they promote other practices and use forms of mediation that facilitate the legitimacy of local ways of knowing, drawing upon aspects of women's embodied lives and encouraging alternative forms of care. Women with breast cancer must recognise in each other the issue about which they are asked to be angry. Artwork plays an important part in establishing and maintaining this. Talk of money or numbers of patients does not make narratives or artworks redundant, because the latter continue to do a different kind of work.

What a study of artworks makes possible in this context is a sensitisation to the different form of mediation that is involved here, one that is marginalised by a focus only upon the emancipatory, juridical and scientifically oriented efforts that define one arm of EHM's efforts.

Conclusion – the breast cancer movement and material culture

Artworks made by women with breast cancer are part of the material culture of the new ‘disease regime’ that has given rise to a sensibility about this disease for women in general. They are repositories of practice that require a bodily engagement, often visually and sometimes in a tactile way. While the breast cancer movement is now well established and able to press for better funding for research, for enquiries into environmental hazards and for changes to medicine's approach to women, many of its arguments are likely to be about money, cause and treatment (Brown et al. 2004). As the breast cancer movement develops so its discursive possibilities become the conventions that can be integrated into new works. Artworks do not stand outside the breast cancer movement and affect it, nor are they simply products that are affected by it. They are part of the material expression (the practice) that constitutes the illness regime. Once made, they have semiotic value, are displayed in public, and can be discursively unfolded, time and time again. This means that it is not just artists or women who have breast cancer but also sociologists who can tell a story with them, one that attends to their representational importance in theorising representations of illness.

If illness in the modern world has become ‘a signifier whose signified is the individual's relationship with the social order’ (Herzlich 1995: 160–1), then the study of its collective interpretation should be of prime importance to sociologists of health and illness. Central to this is a recognition of the importance of the establishment of visual and discursive space, of which a key aspect is the production and deployment of what we have called ‘works of illness’. The existence of these works and their place in illness culture are quite misunderstood if they are seen as merely the outpourings of individual grief and loss, or the narratives of isolated individuals. Or, alternatively, if they are seen as merely products designed to influence ideas and practices in the political world of healthcare. To the contrary, we argue that they represent the potential for change regarding the representation of illness, the aim of collective critiques relating to medicine, the chance to redefine the relationship of the individual to social institutions, and strategies for survival.