Who Cares?

Op de NVMG ledenvergadering van zaterdag 13 april 2019 hield Prof. dr. Manon. S. Parry  een voordracht over de belangrijke rol die medische geschiedenis in de maatschappij kan spelen. Zij toonde trends, die een rol spelen bij het verzamelen en beheren van de verschillende collecties medisch erfgoed in musea en bij instellingen. En zij illustreerde de aantrekkingskracht van het medische erfgoed en haar verleden voor een een breed publiek. Manon Parry is bijzonder hoogleraar medische geschiedenis VU (tevens universitair hoofddocent American Studies and Public History bij de Universiteit van Amsterdam en voormalig curator bij de afdeling History of Medicine van de National Library of Medicine in de VS).

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“Who Cares? Medical History Subjects, Objects, and Audiences”
I was invited to present my vision of medical history and my plans for the VU-University professorship – so I am going to begin my telling you about my work before I moved to the Netherlands and how that influences my approach. I’ll talk after that about the projects I have developed since coming to the University of Amsterdam in 2012, and how I try to combine my academic research with projects for a broader audience. Then I will conclude with what I am doing at the VU and why. Throughout, I want to stress my conviction that medical history is of interest to diverse groups, although it is too often reduced to simplistic narratives of heroes or villains – based on insider perspectives or outsider critiques. Neither narrative allows us to fully understand experiences of illness and their medical management. Moreover, instead of learning from one another, the different stakeholders invested in these histories end up talking past each other – preventing us from building a broader community of people who can share ideas and experiences to enrich our understandings of the past, but also to improve our interactions in the present. The projects I discuss here are aimed at broadening our sense of what medical history includes, who can contribute, and what it is useful for.

I – Public History of Medicine
I describe myself as a public historian of medicine, meaning my history projects are more likely to be activities for broad audiences, such as exhibitions or films, rather than scholarly books, although I do both kinds of work. I started on this track as an exhibition curator at the National Library of Medicine, the world’s largest medical library, on the campus of the National Institutes of Health just outside Washington DC. Fifteen years ago, when I took up this role, the exhibition program in the history of medicine division there was developing exhibitions, websites, events, and educational resources for school and university classes, focusing on the interrelationship of medicine and society.
The projects showcased library collections as well as historically valuable material borrowed for particular topics, and drew connections between the history of medicine and the contemporary work of NIH scientists. An example is the exhibition “Changing the Face of Medicine: America’s Women Physicians,” which spanned 150 years since women were first admitted to medical schools in the US, and included more than 350 female physicians.[1] The exhibition storyline considered themes in the changing experiences of women in medicine over that time, including racial discrimination and glass ceilings, scientific breakthroughs, and reforms of health care practices, public health policies, and educational and institutional systems. Research for the project highlighted the marginalized place of women in the history of medicine in various ways. For instance, there were no surviving photographs of the first two African American women physicians, Rebecca Cole and Rebecca Crumpler; Harvard University Library had “misplaced” Dr. Mary Putnam Jacobi prizewinning 1876 essay, which disputed the idea that women were physically unsuited to higher education—it was eventually discovered and sent on to us to exhibit, complete with a footprint on the cover having been dropped, and left, on the floor at some earlier time. And a reviewer, from a prestigious medical journal, remarked in an email to his editor that I was not supposed to see, that the exhibition was exactly what he expected: full of women holding babies. He thus confirmed his assumption of a narrow range of roles for women in medicine (in pediatrics, for example), despite the display of a wide range of profiles he had actually seen in the exhibition, which included surgeons, directors of government, leaders of disaster response, and an astronaut.
Research for the exhibition illustrated women’s complex encounters with the gendered culture of medicine over the course of their careers, confronting barriers and overt discrimination as well as more subtle challenges. Some became vocal advocates for other women and marginalized groups in the profession, while others played down the significance of their experiences for fear of being misunderstood or mistreated. The project drew on new historical research as well as analysis of current issues facing women in medicine, and resulted in an award-winning edited collection of scholarly essays, Women Physicians and the Cultures of Medicine.[2]
As well as being highly relevant to health professionals, the project was of great interest to the general public – and a section of the website where visitors could share their  story of an inspiring woman physician collected many contributions. The American Libraries Association also traveled a version of the exhibition around the country. Venues that applied to host the show had to demonstrate how they would attract a diverse audience by organizing collaborative events between medical schools and public libraries. We undertook a similar project focusing on individuals and their impact on health and medicine, to mark the 60^thanniversary of the World Health Organisation, in collaboration with the WHO, drawing on their archives in Geneva as well a regional offices and networks around the world. The exhibition theme was health as a human right. The project served as a counterpoint to a very different representation of global health circulating at the time in a series on public television (“Rx for Survival”), which was funded by the Gates foundation and emphasized high technology solutions, encouraging viewers to donate money to save children in other countries.[3] That series played into American assumptions about global health – that it was about other people, in other places, and that technology was the answer – which we set out, in contrast, to challenge. “Against the Odds: Making a Difference in Global Health,” focused instead on health as a human rights issue, and considered how access to food and land, protection from violence, and freedom from discrimination shaped health and illness.[4]
I found the research process for this project very intense. In San Francisco and New York, I visited community organisations that were established in the early years of the AIDS crisis in the US, and met with staff who were still grieving, and still dealing with discrimination and stigma. Some were unwilling to lend their materials for the exhibition, protesting the Republican government’s past inaction (on AIDS) or ongoing policies (in the Iraq war). After the exhibition opened, I saw the powerful impact of presenting the history of HIV from different, sometimes competing, perspectives by bringing the story of AIDS activists to the campus of the NIH where they had once protested. Touring the exhibition with some NIH researchers who were working there at the time of the protests, I heard about their feelings of shock and dismay when they became the target of the activists’ anger, and their reflections on what they understood or misunderstood at the time versus their perspective today, looking back. Members of the activist coalition ACT UP agreed to share their memories and materials for the exhibition, glad that a government institution was including their side of the story.
My favourite moment in the whole process, was visiting Dr. Bernard Lown, who co-founded International Physicians for the Prevention of Nuclear War with Soviet physician Dr. Evgueni Chazov. A colleague and I traveled to his home in Boston, to ask to borrow the Nobel Peace Prize they were awarded for their work – which he kept on a chain to wear around his neck at parties! After hours of fascinating conversation about his career and his view of the roles and responsibilities of physicians as agents of change in a troubled world, he agreed. The Nobel medal was featured in a section of the exhibition on “The Legacy of War,” where we also presented the Mine Ban Treaty of 1997, signed by 122 countries, but not including the United States.
My peers in both public health and the museum field have since commented on their surprise that we were able to address these topics in a government institution during the presidency of George W. Bush, at a time when he was linking activism with terrorism, and when questioning the American government was seen as unpatriotic. Part of the reason we were able to do this was thanks to the careful leadership of the chief historian there—my former mentor, Dr. Elizabeth Fee, who died late last year and who will be honored in a special tribute in the American Journal of Public Health in June.[5] But I also think we had an unusual amount of leeway precisely because the relevance of medical history is so underappreciated, as is its power to engage diverse audiences. People just did not expect an exhibition on the history of global health to include these issues, or anticipate that health and human rights would prove so energizing for the audiences who visited.

By including young people engaging in related issues—medical students working on HIV prevention and teenagers campaigning against gun violence, for example, we also inspired young visitors to think of their own possible roles in public health issues, whether they aimed for a career in medicine on not. As further proof of the level of interest in the project, a traveling version of the exhibition toured from 2008-2018, and some of the topics addressed have been further developed in subsequent exhibitions, including “AIDS is not Over: Surviving and Thriving,” on tour since 2013.[6] This high demand also calls into question the assumption that some topics in medical history are off-limits or unsuitable for a general audience. When I tried, for example, to pitch a project on the history of disability, administrators complained that it would be “too depressing” for the public, revealing that the common misperception that living with a divisibility is a tragedy or a burden is just as prevalent in medical circles as it is in wider society. Such negative views shape negative attitudes to people with disabilities, and fuel stigma and discrimination, and they are precisely the reason that it is important to address the topic in public projects. Instead, disability is left out of history, leaving us unaware of how widespread it was in the past, as well as marginalizing the experiences and contributions of people with disabilities then and now.

I discussed this dilemma with Dr. Katherine Ott, curator in the Division of Medicine at the Smithsonian’s National Museum of America History, as she had encountered similar opposition there. She was able to use the 50^thanniversary of the development of the Salk vaccine against polio to build support for a groundbreaking exhibition that brought disability history right into the heart of the museum, and she continues to collect objects and archival material so that unpopular histories of health and medicine will still be preserved for the future, even if colleagues are unwilling to see them exhibited today.[7] On her advice, I reframed my focus on disability as a project on medicine and war—and that idea did gain approval, indicating how flexible the notion of a “depressing topic” actually is when it comes to the histories we are used to seeing versus those we have ignored.

The project that was approved, “Life and Limb: the Toll of the American Civil War,” focused on the experiences of doctors and soldiers.[8] It is one example of a growing portfolio of exhibitions by the National Library of Medicine with an entirely historical focus and without attention to contemporary figures, unlike those projects I described earlier which drew explicit connections between the past and the present day. The historical exhibitions explore a wide range of subjects, from representations of the four humours in Shakespeare’s plays, to the history of medicinal and recreational drug use.[9] Some reach new audiences, such as an exhibition on the historical inspiration for magical powers and potions in the Harry Potter books, which has been just as popular as you might imagine with school groups (as well as their parents).[10] Building on the cultural history of medicine, others move into the broader field of the medical humanities, such as an exhibition on graphic medicine, a popular genre of illness narratives in comic book form.[11]

All of these projects include an exhibition website with additional resources, including lesson plans for high school and university classes, developed by history teachers and academics. The physical exhibition is easy to ship between venues, and can be set up in a variety of ways depending on the space available. Host institutions, usually medical or public libraries, can then display their own collections relating to the theme, and organize local speakers for events to showcase the work of medical faculty in the area. The exhibitions now travel to more than 300 places across the US, as well as some touring internationally to venues associated with specific topics in Argentina, Canada, Germany, Guam, Turkey, and the United Kingdom.

Reactions from the host institutions illustrate the varied audiences who enjoy the exhibitions:[12]

“I appreciate very much the exhibits. They add flavor and change to our Center of Excellence at the hospital and help create a sense of innovation, education and reflection in our healthcare environment” (Methodist Healthcare, Methodist University Hospital, Memphis, TN, January 2016, Literature of Prescription: Charlotte Perkins Gilman and “The Yellow Wall-Paper).

 “I think the exhibition was fabulous and a wonderful entrée for health/medicine issues for kids,” (Melissa Kendrick, President/CEO, Mel Fisher Maritime Heritage Society and Museum, Key West, FL, July 2015, Renaissance Science, Magic and Medicine in Harry Potter’s World)

“We have a military population who are also medical professionals (or training to become medical professionals) so it is particularly nice to have an exhibit that links these two areas,” (Alison E. Rollins, Uniformed Services University of the Health Sciences, Bethesda, MD, January 2015, Binding Wounds, Pushing Boundaries: African Americans in Civil War Medicine). 

In one week at a Kaiser Permanente Medical Centre in California, over 4000 people visited the exhibition “Pick your Poison.” The largest group of attendees was made up of patients and their visitors, followed by healthcare staff at the facility. Almost 1500 people asked exhibition docents about the substances featured or told stories about their own experiences with drugs or alcohol. The hosts had prepared related library resources online, including materials for giving up smoking or accessing addiction treatment, which were downloaded in twelve languages.[13]
Some have also been used to generate new research and identify and preserve little know or at-risk archives, such as an exhibition on Native Hawaiian traditions and health.[14] The project explores the impact of American intervention in Hawaii and the negative results for Native Hawaiians, as they lost access to their land, traditional foodways, and cultural knowledge, and the revival now underway which focuses on bringing back these traditions to improve public health. It is an example of how a broadly-defined notion of the history of medicine, that includes health and well-being, can intersect with diverse communities’ own priorities about documenting their experiences and drawing attention to the health issues that concern them.

II – Current Activities in Public History of Health and Medicine
Since I moved to the Netherlands, I have begun to research the work of other medical museums, and consider how they are engaging with contemporary issues and audiences, as well as the histories that are missing from our archives and museum collections. I am currently in the third year of a four-year project, funded by an NWO Veni grant, investigating European medical museums, and their presentation of specific issues – including mental health, sexuality and reproduction, race, and disability.[15] This has given me the opportunity to interview staff at a wide range of very different kinds of institutions, from well-funded and famous places open to the public, such as the Wellcome in London, to emerging museums based on vulnerable collections hidden away inside medical schools, in Spain, and Croatia.

Ironically, although the Wellcome funds a great deal of medical history in the UK (and some internationally), that scholarship does not usually make its way into the public exhibitions, which are usually led by art curators rather than historians. They are in the process of redeveloping their contemporary medicine gallery however, and informal conversations suggest that they are thinking about shifting this balance to better incorporate the historian’s view. Nearby at the Science Museum London, a £24 million renovation (including Wellcome funding) is underway to modernize their medicine galleries, an investment that suggest great confidence in the ongoing appeal and relevance of medical history.[16]

In fact, medical museums have recently undergone renovations in all over Europe, (including Austria, Cyprus, and Italy). Some are bringing important chapters of history into the open for the first time, such as a new exhibition on the role of University of Vienna medical school physicians in Nazi medicine, which opened last year and will become part of the permanent exhibition when the Josephinum museum reopens after their renovation, currently underway.[17] And of course here in the Netherlands, the Vrolik Museum was reopened in 2013, the Boerhaave in 2018, and the Dolhuys museum is closing for its second renovation after reopening just a few years ago as the Dolhuys Museum of the Mind.
There are plenty of places where these levels of funding are not so forthcoming, of course, where medical museums are closing or plans have stalled, and where collections are at risk of destruction. My preliminary research suggests that this vulnerability corresponds to two issues: firstly, the discontinued use of historical collections in medical education, and secondly, the relative health of the field of medical history in the country’s universities. In Zagreb, for example, the Pathology Institute of the Medical School houses a beautiful collection of pathological specimens used in teaching until 2002, but now rarely visited by students and under threat. For now, its survival depends, like so many other collections I have visited in the basements and classrooms of medical school departments, on the dedication of just a couple of staff who have taken on the extra responsibility of trying to save it.
Even in these circumstances, there are reasons to be optimistic. A fifteen minute walk away in the centre of the city, a new medical museum mandated by the Ministry of Culture is under development at the Croatian Academy of Medicine and Pharmacy (who donated the building), but where they still need to secure funding to renovate the premises and display their collection of more than 4000 objects. The pathologists are in discussions with the historians at the museum team to collaborate on exhibitions – aiming to still keep the pathological collection in its current location and draw visitors to the medical campus to see it. Elsewhere on campus, there are two other collections that could also be of interest, in the forensic pathology and anatomy departments, and this situation is similar at numerous other universities of course.
In Madrid, a small team rescued an incredible collection of nineteenth century wax dermatological models after finding it bricked up behind a wall during a building renovation.[18] The nineteenth-century models were in damaged boxes but most had survived relatively well. Since then they have rehoused the collection in museum-standard storage and restored some of the damaged pieces, as well as creating a compelling exhibition in a series of rooms in the medical school.[19] The group is also in discussions with other departments about combining collections to establish one campus medical museum, although that is anticipated to take several years of negotiations.
Initiatives like these stem from different impulses. Some of the people involved reject the widespread assumption that these collections are no longer useful for medical education. As one pathologist told me, with few dissections taking place anymore in medical schools, the collections are a useful place for students to see phenomena first-hand, rather than through a photograph or digital presentation. Encountering specimens in the medical museum makes a far greater impression, much more likely to be remembered. There are also new uses for this past: the Anatomical Museum of Leiden University Medical Center and the Medical Museum of Kawasaki Medical School in Kurashiki, Japan, both use technology to represent their historical collections to current students, and genetics researchers continue to use historical samples from medical museums to research past epidemics as well as ongoing medical mysteries.[20]
With the threat of re-emerging infectious diseases, we may also see a renewed relevance for historical examples of conditions we thought conquered. Techniques and tools that seem outdated might still have lessons to teach us about the tacit knowledge of the person who used them, for example, as museums no longer restore objects to “perfect” condition but instead preserve the signs of wear and tear, or adjustments made by the user, that can reveal new insights about medical practice in the past.
Other advocates for preserving medical heritage see a wider interest in these collections among artists, or as examples of art themselves, especially anatomical wax models, such as the eighteenth century collection of the Joesphinum Musuem Vienna, shown recently in the Netherlands in Amazing Models exhibition at the Rijskmuseum Boerhaave, or the work of Frederick Rusych. Increasingly, custodians for these collections are also discovering that members of the public without a medical background, or any artistic interest, are nevertheless fascinated by the materials themselves and the histories behind them.

Medical Museion, Copenhagen, has been so successful in attracting a wide general audience, with exhibitions combining historical collections with artistic projects and multimedia elements, that they are expanding the museum space and their team of staff. Historian-curators teach in the University of Copenhagen and also publish influential analytical studies of how to collect and interpret contemporary medicine.[21]
But there are museum leaders who are less enthusiastic about the idea that non-medical audiences have access to these collections, with human remains in particular being a concern for them, but also graphic anatomical models, or dehumanizing depictions of patients. Setting aside the legal issues of privacy and patient confidentiality that is involved with more recent material, concerns are often framed around ideas of “respect” for the people whose bodies were used for specimens, often without their consent, or arguments that non-specialists don’t bring the right attitude, or are motivated to visit by the wrong reasons. I am not convinced by these arguments myself, but I do see that they are often interwoven with the continuing work of the institution. If the museum is still actively collecting human specimens, for example, they are worried about exposing the museum to controversy or deterring donors from agreeing for their materials to be stored or used in this way.

My conversations with curators have revealed numerous examples of non-specialists using engaging with historical medical collections is socially-useful ways. Women who are pregnant and awaiting the results of prenatal genetic tests, or others who have miscarried, visit the fetal specimens to understand the impact of developmental abnormalities on the fetus in the womb. People who have disabilities or health conditions represented in collections bring visitors with them to use the examples to explain their own situation, or visit their own removed organs or limbs that they have given museums permission to display.
There are also new approaches to the representation of disability and mental illness emerging in medical museums, notably with arts and performance in the UK, and the transition of museums of the history of psychiatry into “museums of the mind,” although in some instances these new perspectives discount or dominate over medical histories rather than integrate with them.[22] A broader shift in how we look at this history, to incorporate multiple perspectives and include diverse groups, but avoid simplistic stories of heroes or villains, will be an ongoing process. I argue, however, that we do a great disservice to visitors when we assume that the general public can’t handle, or respond appropriately to, materials with such tangible connections to human experience. Even if they have no personal relevance, many of these collections are deeply thought-provoking regarding the conditions of the past, the impact of medical developments, and the continuing processes of shifting paradigms and changing priorities that shape scientific research, medical treatment, and lived realities of illness and the life cycle.

My research has also revealed some significant gaps in the collection and interpretation of medical heritage. From the early years of the emergence of the AIDS pandemic, for example, historians and healthcare workers recognized they were witnessing an historically significant event. Yet museums have not collected very much, and certainly not a very diverse range of objects, making it difficult to exhibit complex histories of the real impact of AIDS across society. Some of these objects represent experiences that will be lost, or excluded from the historical narratives we produce as a result of this.[23]
Last July, in conjunction with the International AIDS Society conference which brought 17,000 international delegates to Amsterdam, the Amsterdam City Council and Public Health Service funded a range of activities for the general public, including a film project I developed with former students to capture a wider range of voices of the epidemic than we traditionally hear from.[24] We worked with Nannie Wiegman of the Florence Nightingale Institute to incorporate interviews of AIDS nurses from one of their recent projects, as well as interviews with AIDS buddies about their role caring for people who were ill or dying, and a range of people living with HIV today.[25] The film was shown at the conference and at the Amsterdam Museum, is available on Youtube, and we are now developing an online documentary to publish more of the interview footage and fundraising to produce new interviews with hard-to-reach groups, including former heroin users, and Deaf people with HIV.
Later this year, in collaboration with Bart Grob and Hans Hooijmaijers at the Riksmuseum Boerhaave, we will host an international workshop on race and medical museums, where museum staff will present “difficult” objects in their collections, including some that have been removed from display because staff are anxious about the problematic histories they represent, such as colonialism and Nazi science. We will discuss how these objects might be used to address the history of racial science, and to intervene in racism today.
A final project I want to mention was launched last month, initiated by people with disabilities, historians, and people working in disability service organisations. The goal of DisPLACE, a digital disability history archive, is to identify and preserve historical materials related to disability history, and interpret these historical traces from the perspective of people with disabilities themselves, with the additional aim of improving digital design to better address accessibility for a wide range of disabilities.[26] This is a starting point with just a few stories included at this point, but we are applying for funding to expand the project and have already drawn attention to the need for more research and representation of disability history.[27]
One of my main arguments for the importance of this project, is that disability is not just a topic of interest to a small minority, but actually has great relevance for all of us—not only because accident, illness, or aging will bring disability to all of us—but also because our notions of the nondisabledare inextricably intertwined with our ideas about disability, just as femaleness and maleness, or whiteness and blackness, or heterosexual and homosexual, are categories that only have meaning in relation to the other. The history of medicine, of course, has something to say about all of these categorisations, underscoring once again just how broadly relevant this field can be when we approach it in this way.

III – Plans for Professorship and Future

I would like to conclude by giving some brief indications of how all of this relates to my role in the special professorship at the VU. Firstly, I am broadening the scope of the medical history master track and expanding it to become a series of four courses in medical and health humanities.[28] This will give students from medicine and health-related degree programs as well as humanities the opportunity to see, together, how different the same health issue can look from a range of analytical approaches, including history as well as sociology, or cultural studies, for example. One course provides an introduction to this way of working, while a subsequent course shares the latest research by guest lecturers who are using such techniques.
The other two courses are designed to use novel strategies to try and shift the students out of their own disciplines and comfort zones, and encourage them to weave together other approaches rather than just “visiting” other disciplines then returning to doing things the way they usually do.
With colleagues working on the engaging the emotions and using all the senses, as well as experts in educational design and participatory and active learning, we have won a Comenius fellowship to develop classes on “knowing by sensing” and hands-on engagement with museum objects.[29] In these sessions students will combine knowledge gleaned from course readings with insights generated in interactive sessions with smells, sounds, materials, and tastes to build up complex understandings of various aspects of health and medicine.
To connect these students to the broader community of people working in medical and health humanities, I will be setting up the “PULSE Network,” and you are all invited to join up and participate in our events, as well as advertise your own medical history activities, I will send on the information for following the Facebook page or joining the mailing list soon. In the future I hope we will be hosting a regular series of public events as well as connecting and sharing news from around the country.

At the moment, I am focusing on building a consortium of historians, medical professionals, patient advocacy groups, and museum and media organisations, to apply to the National Science Agenda for a research project using medical and health humanities approaches to address urgent issues. We will focus on a range of issues, including mental health, death and dying, sexuality and reproduction, but all addressing the themes of diversity (among patient populations and health professionals), and distrust, from public suspicion of scientific expertise to medical paternalism. Crucially, we need to connect to medical researchers, patient advocacy groups, and healthcare practitioners working on the topics we are considering and who would be interested in taking this creative, interdisciplinary approach. So if you can recommend people for me to contact, please let me know.
The core thread in all of the work I am engaged in, and my vision for medical history, is to move beyond the artificial divide between health professionals on one side and patients on the other, which I believe is a key reason for distrust between the two, and to build new kinds of collaborations, to consider competing perspectives, and to uncover hidden histories, together. I hope you’ll agree that this is a worthy goal with exciting prospects for the years ahead.

Hier vindt u de noten behorend bij Who cares? Medical History Subjects, Objects and Audiences.

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