This post is part of Bill of Health’s ongoing blog symposium on Critical Studies of Citizen Science in Biomedical Research. Below, Bruno Strasser and Dana Mahr trace the rise of experiential knowledge in the 1970s, probing the historical origins of participatory research through the examples of urban planning, women’s health, civil rights, and toxic sites in the United States. Background on the symposium is here. You can call up all of the symposium contributions already published by clicking here.
In his Social History of Truth, Steven Shapin argued that, in the 17th century, the credibility of the natural philosopher’s testimony — but not that of the drunken sailor — derived from his social status as a gentleman (Shapin 1994). By the 19th century, with the professionalisation of science, the credibility of knowledge claims came to be tied to the professional expertise of the “scientist” and to the institutions where he, or more rarely she, worked. How then, in the 21st century, did a discourse emerge granting “lay people”, “amateurs”, or “citizen scientists” — which are neither gentlemen, nor scientists, and often work from home — credibility in the co-production of scientific knowledge? There is no simple answer to this question, yet we would like to offer one in this contribution.
Three narratives have tried to explain the historical origins of current participatory research. The first looks back at the contributions of amateur naturalists in the 19th century, the second at radical scientists’ movements in the 1960s, and the third at the personal computer revolution in the 1990s (Strasser et al. 2017 – forthcoming). Here, we suggest a different narrative, focussed on the rise of “experiential knowledge” in the 1970s. In current participatory research, the challenges to the monopoly of expert knowledge — experimental and clinical — rest in part on the claim that lay people’s experience of their own bodies and environments can be reliable sources of scientific knowledge. The ability of lay people to identify changes in their bodies (PatientsLikeMe), to notice disturbances in their environment (Community Based Environmental Monitoring Network), and even to recognise subtle patterns in images of galaxies (GalaxyZoo) or to fold proteins in three dimensions (Foldit), all rest on intimate bodily experiences. It is not reason at work, but bodily perception; not objective facts, but subjective sensations; not experiment, but experience. Then how can it be considered legitimate science, knowing that the very exclusion of experiential knowledge was part of the making of modern science? By the 1970s, we suggest, in the turmoil of the counterculture, activists challenging the authority of science attempted to reclaim experiential knowledge as a legitimate source of scientific knowledge, reopening the epistemological toolbox of science. The examples of urban planning, women’s health, civil rights, and toxic sites illustrate how such a transformation might have taken place.
In postwar United States, urban planning by government agencies came to rely increasingly on academic research. The opposition between Robert Moses and Jane Jacobs over the development of the city of New York dramatically illustrates the growing opposition towards scientific, rational, and expert-driven planning as well as the call for public participation based on experiential knowledge. In her 1961 book, The Death and Life of Great American Cities, Jane Jacobs, an activist and writer with no professional credentials in architecture or planning, offered a sustained attack on the epistemological groundings of “scientific” urban planning, its unquestioned modernist assumptions and rationalizing ideology. In Jacob’s words: “because we use cites, and therefore have experience with them, most of us already possess a good groundwork for understanding and appreciating their order” (Jacobs 1961, p. 376). She did not exclude the need for scientific expertise, but fought against the exclusion of lay experience, because “no other expertise can substitute for locality knowledge in planning” (p. 418). As sociologist Lily M. Hoffmann notes, by the mid 1970s, there was a clear shift in urban planning from “master planning”, ruled by experts infused by the ideals of “benevolent paternalism” (Hoffman 1989, p. 50) towards “decentralized and participatory planning” based on experiential knowledge of residents (p. 115).
In the 1970s, parts of the women’s health movement was making a similar move. In Vaginal Politics (1972), feminist Ellen Frankfort argued that feminist self-help movements, such as the Boston Women’s Health Collective (the collective author of Our Bodies Ourselves), called for “breaking down the barriers the medical profession has erected in order to preserve its monopoly over information” by encouraging lay women to produce knowledge through self-examination and sharing of experiences (Frankfort 1972, p. 221). This approach led, for example, to the development of the menstrual extraction method — a bottle, two tubes, and a suction syringe, reducing the duration of the menstrual flow “from five days to five minutes” (Frankfort 1972, p. 222). It also led to the Menstrual Cycle Study (1975), where a group of women, in “an effort to practice research otherwise” (Murphy 2004, p. 133), produced the first detailed visual documentation and scientific study of the human menstrual cycle, through self-examination and sharing of experiential knowledge.
Similarly, civil rights movements, such as the Black Panther Party, attempted to “put a check on medical authority” though the “valorization of non-experts’ experience over physician’s expert knowledge”, according to historian Alondra Nelson (Nelson 2013, p. 88). For the Black Panthers, the neglect of sickle cell anemia by medical professionals amounted to a “black genocide”, leading the Party to organize free sickle cell anaemia screenings. Promoting the use of a cheap diagnostic kit, they encouraged non-medical professionals to diagnose the sickle cell anemia trait and suffering African Americans to define the disease through their own experiences and narratives, changing the political debate around the disease. Similarly, in the free clinics established by the Party, patients were encouraged to challenge the medical expert’s judgements based on the patient’s illness experience. In focussing on “experiential knowledge”, the Black Panther Party hoped to find a remedy to the biases of “mainstream medicine” (Nelson 2016, p. 88).
The toxic waste movements offers yet another example of the rise of experiential knowledge. In 1972, residents of Woburn, Mass. — like those of Love Canal, NY previously — started to mobilise against industrial water contamination which they believed was causing leukaemia among children, even though state agencies had declared the water safe. In their study of Woburn, sociologist Phil Brown and epidemiologist Edwin J. Mikkelsen note that the “residents begin to distrust traditional scientific authorities when those authorities contradict the experiential knowledge the community has gathered and developed” (Brown and Mikkelsen 1997, p. 65). As a result, residents engaged in an original form of public participation in scientific research, “popular epidemiology”, combining experiential knowledge and expert knowledge, which allowed them to challenge the scientific consensus produced by the state (and industry), giving “more credibility and power to the lay public” (Brown and Mikkelsen, p. 173).
Protesters against the Love Canal, a toxic waste site near Niagara Falls, New York in the year 1974. (Source: http://www.loe.org/shows/shows.html?programID=13-P13-00050.)
These critiques of the epistemology of professional expertise did not seek to reject science, but to develop an alternative mode of empirical inquiry. As historian Michelle Murphy put it about the women’s health movement, “the feminist self-help movement saw itself, not in opposition to, but as a form of scientific practice” (Murphy 2004, p. 126). Even if the most radical aspirations to transform science and medicine were short lived, their ideals continued to inform the lay critique of science and medicine as the patient health organizations in the 1980s, such as ACT UP in the US or the AFM in France, made so clear (Epstein 1996). By that time, it was becoming increasingly difficult, in the United States, but also in Europe, to brush aside the claims of lay people simply because they did not carry professional credentials, thus opening the door for the current forms of public participation, including “citizen science”.
Stayed tuned for more posts in the Citizen Science Blog Symposium!