Thursday, September 13, 2018

Silences About the Corpses in a Crowded Museum: Processing My Visit to the Mütter

“Disturbingly informative” is the slogan of the Mütter Museum in Philadelphia, Pennsylvania. This (in)famous museum of medical oddities has been on my to-do list since before I started the blog, and I’m glad I finally visited. However, I ultimately disagreed with the slogan -- while it was fascinating, I didn’t find the museum informative in the ways that I think are most salient to their collection of medical abnormalities. It fell short on acknowledging the complicated, often racist and colonialist history of collecting and displaying human remains, and on exploring the ways in which people whose bodies are abnormal are frequently dehumanized and gawked at in life as well as after death. On these topics, the museum is far too silent. The purpose of the museum is to educate about medical history and the human body, but I didn’t feel more informed, and I didn’t get enough information on the social or medical context of the “oddities” on display. Overall, I appreciated my visit to the museum, but I was also troubled by it. I had heard that Mütter has done a lot of work to acknowledge their complicated heritage, and I was expecting more. It has taken me a while to put my thoughts together on this -- part of me wants to go back to see if I missed things, but living in Boston, it’s not going to happen right away.

There were several things I really liked about the museum. Clearly, I wasn’t alone, as it was quite crowded. The collections are captivating -- I pulled my friends over to see an early surgical sterilizing sprayer. The core of the collection is specimens of highly unusual medical conditions, which I found really interesting, if complicated to look at. The current exhibit, Broken Bodies, Suffering Spirits, on Civil War injuries and disease, was quite well done. I appreciated that in that exhibit, the museum tied as much of the story as they could to specific, named individuals, often people they even had photos of. In the main hall in a section on skin cancer, a label described the museum director’s own experiences with melanoma. These elements helped the exhibits feel like they were about people rather than just bodies. On the other end of the spectrum, I really liked the temporary exhibit Woven Strands: The Art of Human Hair Work, which talked a bit about the people who made the intricate flowers, wreaths, and other scenes, but also emphasized the different techniques used, giving more detail than I’d ever seen in a display of hair art.

I knew going into the museum that the history of human specimen collections in museums is rife with ethical issues, and I hoped to see some of that acknowledged in the labels and mitigated by their display choices. Briefly, there have historically been many issues with how the scientific establishment (traditionally, the white scientific establishment) has collected bodies for comparative study and for teaching. For a long time cutting into a dead body was frowned upon in Europe and the U.S. Into the 19th century, criminals who were executed might be sentenced to be dissected in a demonstration for students as part of their criminal sentence. Even longer than that, autopsies were conducted on bodies that had been stolen from their graves; the poor and racial minorities were particularly targeted as their graveyards were less protected. There’s also a long history of medical research disproportionately using the bodies of marginalized people, both in life and after death. I recommend the book Medical Apartheid by Harriet Washington for more information. The book makes a couple of leaps that I didn’t quite follow, but overall it’s a very well researched and thorough analysis of medical experimentation on Black people in American history. I haven’t read it yet, but I know based on its reputation that the book The Immortal Life of Henrietta Lacks by Rebecca Skloot also addresses this subject; the Mütter even carries it in the gift shop.

The history of the scientific establishment violating the wishes of marginalized groups makes consent issues especially important when looking at human remains. No matter what you believe about what happens after we die, if a person hasn’t consented to their body being used in a certain way, that poses an ethical issue, especially since certain groups are disproportionately targeted. The Mütter Museum has inherited a lot of these issues, and a lot of objects with questionable or troubling provenance. One of the famous bodies in their collection, dubbed the Soap Lady, is believed to have arrived at the museum after her grave was robbed. The label accompanying the body discussed research done several decades ago that showed that what little information the museum had on her was fabricated. For example, the late 19th century donor had said she was found in a graveyard on a specific site, but that site has never had a graveyard. I got the feeling the label was intended to present this as an interesting historical mystery -- which indeed it is, but it’s also clear that at one point, someone tried to obscure the woman’s origins, and they mostly succeeded.

Museums like the Mütter benefited from the long tradition of collecting and analyzing bodies to advance theories about race. “Collecting” sounds passive, but this involved grave robbing, taking the victims of the US government’s wars against native peoples, and sometimes violently overtaking people who were trying to protect their family members’ bodies. For more on this topic, I recommend Samuel Redman’s book Bone Rooms -- I was disappointed not to see it in the Mutter Museum’s gift shop, given the relevance, in fact. Scientific racism included several trends. Some researchers were flat-out trying to prove that non-white races are not human or are sub-human. Some biologists and anthropologists looked at various indigenous peoples around the world to try to find the “missing link” between humans and apes. Scientific racism was the ideological fuel for a lot of the collecting that happened in 19th century anthropology and medical museums. These collections were used to justify theories that were never scientifically accurate or methodologically sound, but were once part of the scientific mainstream. In turn, these theories were used to justify slavery and to inspire and justify eugenics, as well as lesser forms of systemic prejudice. This trend was prominent in the 19th century, but it started earlier than that, continued in the 20th century, and there are remnants of it in some schools of thought today.

With all of that heritage weighing on the Mütter, I was hoping to see more explicit acknowledgement of the historical issues. Many of their visitors don’t know this history. The small label on the history of anatomy collections didn't feel like enough. It's also a double dose of erasure not to discuss the origins of these bodies. The people behind the specimens, their lives and cultures, are rarely identified, and whether they gave their permission to be displayed is rarely mentioned.

The museum does have a little disclaimer in the brochure about outdated language in the exhibits, and another in entry area that says the collection was largely developed by 19th century white men. I think the museum is using the disclaimers to try to own up to the limitations of their collection and to educate about these problems rather than perpetuating them. However, the exhibit text has catching up to do. One of the centerpieces of the 
Mütter is the collection of European skulls collected in the late 19th century by Joseph Hyrtl. He was interested in disproving racist phrenology, but was little better than his peers in collecting the bones of the most marginalized of his society. The labels were certainly not printed in 1874 when the collection was acquired, but they don’t comment on Hyrtl’s choices. I saw labels with words like “gypsy” (a racial slur) and “imbecile” (an ableist slur) that were considered “appropriate” in their time periods. The thing is, the modern visitor doesn’t gain useful information by seeing these slurs, unless the museum provides context. For example, the label of the skull of an “imbecile” could describe when the term was used, the various conditions that were lumped together under the word, and how society treated people deemed “imbeciles.” It could provide insight into why Hyrtl felt it was important to include this skull in the collection. All of that is missing. Really, throughout the museum that sort of information is missing -- or at least, it’s the exception rather than the rule. The social context and the power dynamics are not described. In the case of the Hyrtl collection there is a label that actually says that the museum plans to redo many of the labels in the next year, with information from the old label but modern language as well. I hope that happens in a timely fashion.

Another problem, that’s related and not, is that the museum doesn’t talk about ableism. The museum galleries themselves aren’t terribly accessible for people with wheelchairs or walkers, which might be difficult to fix, or to people with low vision, which could be addressed with better, bigger labels. But also, the history of collecting disabled bodies is filled with problems similar to the history of collecting non-White bodies, and the museum doesn’t address it. People with disabilities and deformities have long been treated as oddities by the medical profession (whether they are impaired or in pain, or healthy but “othered” because of their disability). Treating people’s bodies like they exist to be experimented on so that the scientific establishment can learn from them is a big thread in disability history. 
For a quick introduction if you’re unfamiliar, I recommend the book A Disability History of the United States, by Kim Nielsen. This kind of exploitation has often gone hand-in-hand with racial exploitation and colonialism; when people were trying to prove that different races were different physiologically, that also involved kind of creating a set of standards for the physiological ideal of a person.

It’s especially concerning to see so many divergent bodies on display without a discussion of ableism because people with disabilities are frequently stripped of agency in their medical decisions. This is another way that consent matters in display. Certainly, there are plenty of people who willingly donate their bodies, or pieces of their bodies, to museums. notable examples in the Mütter are a man with a bone growth disease who wanted his skeleton used for education, and a woman with a compulsive skin-picking habit who donated two jars of pieces of skin. There are also people who don’t care how their bodies are used, who see an amputated body part or a corpse as nothing more than dead tissue, and that’s fine. But there has been enough systemic exploitation of disabled and divergent bodies that you have to assume that some specimens were acquired without knowledge or consent. The Hunterian Museum in England famously has the skeleton of a man who was dubbed the “Irish Giant.” He wanted to be buried at sea because he didn’t want to be experimented on after his death, but his wishes weren’t respected. The 
Mütter Museum later acquired a skeleton one inch shorter, the tallest on display in America, whom they dubbed the “American Giant.” The label mentions that his grave was robbed. And yet, the grave-robbing labels are the only ones I saw that even touch on the concept of consent.

The area where I was most concerned was the exhibit Imperfecta, which displayed a number of images from medieval books illustrating abnormal births. The exhibit text said it is natural to react to react with fear and disgust when confronted with a disfigured person, in this case specifically discussing disfigured babies. Towards the end of the exhibit, there was a little bit on objectifying disabled people in freak shows, and on medicine starting to understand various causes of disfigurement in the 20th century. But unless I missed it, and I don’t think I did because the exhibit was fairly small, they didn’t discuss the fact that these illustrations of “monsters,” these depictions of divergent bodies as supernatural or demonic, perpetuated and helped to create the fear and disgust. At no point that I saw did the exhibit critique the idea of being fearful or disgusted by divergent bodies, except to say that “abnormal” is relative. Maybe the museum believed that the critique was implied, but if so, I feel that they failed at communicating their message. When the history is this important, this rough, and relates to prejudices that are alive and well, it’s a disservice to visitors not to express a clear stance that reverberates throughout an exhibit.

The museum used the word racism a couple of times in describing some historical attitudes; they didn’t express an opinion on any current attitudes. I never saw the word ableism in the museum. This seeming lack of awareness, and definite lack of attempts to make visitors more aware of the way in which this gawking at bodies is problematic and othering. It's continuation of something that people with disabilities or deformities face in their real lives. Ableism affects affects people's ability to get jobs, to be treated equally by the court system, to be allowed to raise a family, to make medical decisions. I’m not saying that any of this could be solved if museums would just be a little more sensitive in their labels. But to omit that entirely from the discussion in a place devoted to looking at people’s bodies is very troubling.

I want to be very clear here. I don’t personally have a problem with exhibiting dead people, with being morbidly (or just regularly) fascinated with death and disease, or with displaying something out of the ordinary and expecting the reaction “wow, that’s so weird!” I know some people don’t like these topics for personal, cultural, or religious reasons, and that’s completely valid. I also think it’s fine to devote a museum to these topics for those of us who do like them. What I have a problem with is the fact that generally speaking, historical practices around collecting and displaying bodies skewed towards perpetuating systemic inequalities based in racism, ableism, and colonialism. If you’re going to put a collection like this on exhibit, you can’t skirt these issues. At minimum, you need to discuss them in depth in the interpretation.

As a museum professional, I’m definitely throwing stones from my glass house, but I think it’s important to talk about how exhibits can so easily perpetuate the biases we’ve inherited as institutions and in our scholarship. I understand and respect how slow a process it is to take difficult, problematic material and create well-thought-out exhibits, especially when the existing exhibits need to be rethought, and when you only have so much space to do it in. I get the sense that someone at the 
Mütter, or a group of people, is trying to move forward, to be more sensitive, more educational, and to provide more context. I also get the sense that something, whether it’s the ideology of some people there, whether it’s not enough hours in the day, or not enough dollars in the budget to create the time, something’s holding them back. Maybe it’s inertia. Maybe it’s something else.

Monday, July 23, 2018

An Anti-Blog Post

When I started A Catalog of Curiosity in early 2016, part of the point was to reach out of my comfort zone. I wanted to make a commitment to myself to try new things and broaden my horizons. I had been out of grad school almost a year and I missed the way it had pushed me. So, with the help of my readers, I made my list of new experiences for me to try and blog about, and that ended up entailing writing about topics I had never written about for an audience. That has been great! I’d dabbled in reviewing museums and exhibits before, but I do much more of it now. I’ve now blogged about my experiences attending events I wouldn’t normally try, like Toastmasters’ meetings, which was also a new thing for me to write about. This blog was one inspiration for starting my newsletter, where I share short-form recommendations of media and events as well as updates on my own projects. 

I’m roughly halfway through the “catalog” or blog list (plus I’ve added some off-list adventures), and there’s one type of post that I’m finding doesn’t work so well. The list items are all related in some way to my work in the broad sense: history, writing, teaching, and navigating the role of museums in their communities. Getting to know the communities around me better is important to me because museums need to understand, work with, and serve a wide range of communities, and also because I think learning about other people is everyone’s work, as a component of civic responsibility and of being a person who never stops learning. However, I put a couple of items on my blog list that were focused on learning more about certain immigrant cultures without figuring out a structure for my learning ahead of time, and I’m finding that the topics aren’t a good fit for me to blog about. I’m thinking particularly of “Get to know a little bit about Brazilian-American culture“ and “Learn more about Afro-Caribbean and Afro-Caribbean American culture and history,” although there may be others that I come across. They are very broad -- my hope was to do a couple of new-to-me things for each post, rather than my typical one experience per post, but I’m finding it tricky to write about them without treating those things like stand-ins for the whole of the topic.

One place I visited as part of trying to get to know Brazilian-American culture was a Brazilian restaurant in the neighborhood I moved from a year ago. My spouse and I had always meant to try it, but never did while we lived there, so we headed to our old stomping grounds for a visit. I’m glad that the blog prompted me to finally check it out. The lunch buffet was three-quarters meat (and priced accordingly) and we’re vegetarian, but on the regular menu there were a few vegetarian combo plates. The restaurant had a nice mix of people I assume were Brazilian-American or Brazilian (I assumed this because they were speaking Portuguese) and outsiders to the culture, so I didn’t feel like I was intruding. The TV had a Brazilian channel on and the front entryway had a newstand with Brazilian newspapers, some Brazilian packaged snacks, and community notices and local business ads, bilingual or in Portuguese. A family at a table near us was having a birthday party. It made me think about how much food can mean to people as a connection to culture and as a reason and means to gather. The restaurant seemed like a little hub for the Brazilian community in the area.


Plantains, yucca, shredded kale, rice and beans. All very tasty,
 although it was a lot of starch at once.
I definitely recommend this restaurant (Oasis in Medford, if you live in the Boston area) but on this blog, I try to write a t least a bit about what I learned, what I took away from an experience. If I were blogging about this particular restaurant, I could do that, but I can’t use Oasis as a stand-in for a culture. “Brazilian-Americans are just barely vegetarian-friendly, but their few vegetarian dishes are tasty?” That could be true or extrapolating way too much from this steakhouse. If I were learning Portuguese, this would be a great place to spend time, eavesdrop a little, pick up a paper. I hoped to use that front newsstand area to learn about other things in the area I could do to learn about Brazilian-American culture, but if those advertisements were there, they weren’t in English -- which is fair! I also watched a Brazilian TV show on Netflix recently (3%, a very good, dark speculative science fiction show) but it would be even less responsible to generalize from that. There are a couple of Brazilian nightclubs in Medford and Somerville, but I hate clubbing. Would I learn more about Brazilian-American culture there? Maybe, but it would still require overgeneralizing. You could also learn about queer culture by going to the right nightclubs, though, and this queer would rather stay in on a Friday night with some chamomile tea.

Similarly, I recently visited the Museum of the National Center of Afro-American Arts, a small museum in Roxbury, in part because I’d heard it has a good collections of Afro-Caribbean American art. I had a good time at the museum, but what I saw was too small a sample size to feel like I had learned about the Afro-Caribbean experience. In some of my blog posts, I write about whatever the experience made me think about, whether or not it’s directly related to the main content of the experience. I even ended up writing about whether museums can reach out more to unions after attending a meeting related to the MBTA (Boston’s transit system). But, something about that approach feels a little disingenuous in this situation. Perhaps it’s because white culture, on the whole, has a bad habit of taking the bits and pieces of other cultures that we like most or interest us most and focusing on them. It’s not that I thought, when putting the “explore another culture” items on the list, that I could get a representative taste of those cultures, just that I didn’t anticipate the differences between getting a little sample and writing about what I learned from it. I also don’t mean that it’s not possible to write responsibly about experiencing bits of my neighbors’ cultures -- just that it’s not a good fit for this blog, at this time. This blog is about learning journeys, and this time I’m most interested in writing about the “how do I approach this” part of the journey. 


Abundant Life, by Robert Freeman, part of the Mardi Gras Indians exhibit
at the Museum of the National Center of Afro-American Artists.

When I started A Catalog of Curiosity it was modeled after the bucket-list style “101 Things in 1001 Days” projects I’d seen other people do. After a while, I noticed that my readers didn’t seem to care whether I fit everything into just under three years, which meant that I felt able to do them on my own schedule. 101 things in 1001 days means about one list item every ten days, and when I was trying to fill my time post grad school, that was perfect, but now that I’ve gotten involved in a number of other projects, I’ve settled into a rhythm of about one thing a month. However, I think that trying a bunch of discrete things (*not* as vague as some of the things on my list!) is a great way to go about learning about a culture, and if a checklist helps you the way mine helps me, great. Go to that restaurant you’ve been meaning to go to. Watch that show with subtitles that mean you can’t watch it while you’re doing chores. Go to that annual festival that’s welcome of outsiders but a bit out of your comfort zone.

Thursday, July 5, 2018

Are We GLAM Enough?

One of the reader suggestions on my blog list was “explore the intersections between museums and archives,” an open-ended topic, but definitely one I’m interested in. I wondered for a while whether there was a specific activity I should do to explore these intersections, but since starting the blog, I’ve had several experiences related to the topic without doing them specifically to write about, so I’m going to look at the topic broadly, and add libraries to the mix. This is going to be one of the more “curiosity” oriented posts on A Catalog of Curiosity, as opposed to the posts that review a specific thing or make a particular argument.

As a history museum professional, and a user of museums, archives, and libraries, I’ve observed that the museum and library worlds tend to be fairly siloed from one another. Both academic and public libraries have a lot in common with history museums in terms of intended audiences and missions to preserve and share information and resources, but you don’t see close collaborations between museums and libraries as a mainstay of their work. You rarely see museum and library professionals sharing conferences or professional development events. The main exception is institutions that really are hybrids or have both, such as presidential museums and libraries. Archives straddle the divide between the two, in that both libraries and museums often have their own archives, and archivists as a profession often have some fluency in the norms of both type of institution.

We talk about the fields as related. Especially on Twitter or in the blogosphere, you often see the acronym GLAM -- galleries, libraries, archives, museums -- to discuss all of these fields. One of the major sources of federal support for these fields is the same: IMLS, the Institute of Museum and Library Services. Of course, many more museums are nonprofits, while public libraries are typically funded by the local government, but we recognize one another as members of the same sector. I’m certainly not saying anything new or radical by suggesting we should collaborate more often. At the same time, I personally haven’t seen a lot of movement on collaboration in the decade I’ve been paying attention.

As part of our honeymoon, my spouse and I spent the better part of a week in London, staying in Willesden, which is in the borough of Brent. I noticed that there was a Brent Museum, and suggested we check it out, to get to know the area where we were staying and as a balance to all of the huge museums we were visiting. The exhibits themselves were interesting and worthwhile, tracing major events in the area from prehistory through the present day. They were quite professionally put together, although some of the interactives were showing signs of age. But what I liked best about it was that the museum is actually housed in their local library. This was convenient for us, because the hours were the same as the library's and it was open later in the evening than many of the other sites we wanted to visit. At first I was looking for a converted conference room marked “museum,” but when we found it, it was a series of exhibits occupying one side of one of the large rooms, right across from the stacks where the history books were shelved. There were a few elements with sound in the exhibits, but it was not a silent area of the library; across the way, people were chatting and students were working together on homework.

I loved this concept. The museum really seemed to be accessible to the community, with convenient hours and no gatekeeping. There's no security guard eyeing you or admission desk asking for a ticket or donation. This model certainly wouldn't work for all museums, but it seemed to be working for this one! One of the few things the Brent Museum seemed to be lacking was space for temporary exhibits to keep people coming back. There was an art gallery in the library as well, which seemed to have temporary art exhibits. The other thing it seemed to be missing was any kind of docent or guide for people who like a more facilitated experience, but the space may well have a docent at other times of the day. I'd love to see more museums in libraries – if not the whole museum, then at least some exhibits.

A number of libraries, particularly academic libraries and large public libraries, do their own exhibits, with materials from their archives. These may not be the same as the Brent museum (which had archeological artifacts, oral history recordings, and other media) but they fulfill a worthwhile niche, and it wasn't the first time I had seen a well done exhibit in a library, by far. My hometown of Ithaca, NY, has a hidden gem in the exhibits of the Kroch Library, underneath Olin Library at Cornell. The Leventhal Map Center in Boston is also worth a visit -- it's a nonprofit that works as a public-private partnership, housed at the Boston Public Library. In another vein, a number of public libraries offer museum passes that library patrons can check out for short periods of time, as part of collaborations to make museums financially accessible to their communities.

I'm curious as to why there isn't even more collaboration and cross-pollination of ideas between museums, libraries, and archives. It may seem like a facile thing to wonder about when there are plenty of examples of good collaboration, but I think we don't have a strong culture of collaboration, despite plenty of exceptions. We never talked about libraries or even archives when I was in grad school. I'm fortunate to be able to work closely with the archives where I currently work, partly because the whole institution is such a small staff, and partly because because of the research I do for exhibits, and I'm learning how much I was missing before. 

I think that there are probably several reasons that the fields don't talk as much as they could. Academic historians (who are not public historians) are typically not trained to use museum collections; they use two-dimensional collections in archives but not three-dimensional objects in their research. Libraries are not solely focused on history, and so connecting with archives and museums may feel too niche. I’ve seen some institutions that have an archives and historical artifact collections but aren’t focused on either (such as universities which have an interest in preserving their own history) put them under one department so they only have to pay one staff member. It’s understandable, but it often means one person trying to do one job for which they were trained and one for which they weren’t. Overall, though, my guess is that GLAM institutions don’t work more closely together because it’s a low-urgency change. There are good examples of collaborations, and it feels like not much is at stake if we don’t collaborate. However, since all of these fields are talking about how to stay relevant and help people understand how relevant sharing and analyzing information is in our modern world, it makes sense to keep taking note of what’s going on at the intersections of museums, libraries, and archives.

Monday, June 4, 2018

Public History, Public Health

One of the things that's been fascinating about transitioning from working in museums that mostly dealt with political and social history around the American Revolution and early republic to working in a medical museum is that in the past three years, I have been exploring a whole world of resources that are now "must reads" and museums that are "must sees." It took me longer than I had intended to finally visit the Public Health Museum in Tewksbury, about half an hour north of Boston. In my defense, they are currently only open regularly two days a week, plus one Saturday a month, and only four hours a day, so it was harder than usual to plan a visit. In their defense, they are volunteer-run; I understand that this can pose challenges to being open regularly, and I applaud them for having both some evening and some weekend hours.

Image is of test tubes inside a wooden case . The tubes are flared at the base.
Mixed in with splashier items, like the iron lung and the 19th-century pedal-powered dentistry drill, 
are unassuming but important pieces of public health history like these tubes used in testing milk.
The Public Health Museum is informative, engaging, and a little bit quirky. It's clear that each volunteer has their own spin on the tour, which is true at almost any museum but perhaps particularly true here. Our guide was an animal lover who also volunteers with the therapeutic equestrian center on the hospital's campus. She went on a long tangent about the risks of misunderstanding what farm-fresh eggs mean, and encouraged us all to refrigerate our eggs no matter how fresh, unless we were absolutely sure they've never been refrigerated or washed. I always do refrigerate my eggs, but enjoyed learning about fresh eggs from her. Our guide's personal touch on the tour was also apparent when she was talking about the historical and present importance of safety testing and regulations for milk, in part because of the risk of bovine tuberculosis: she summed up this portion of the tour with the statement, "I like cows, but they are phlegmmy." I was reminded a little of my experience at the Boston Fire Museum, in which a volunteer said that the way to see the museum was to "plug into a person to get the stories," and a little of some of the volunteers I work with, who, if you're lucky, will tell you a funny story from their days as a nursing student or a resident.

Small wooden desk with some fliers, a clipboard, and a plaque with text and a man's photo.
The entry hallway was a bit confusing, but not because of this little desk,
 which features the guestbook but also a tribute to a late long-time volunteer.  

That said, the Public Health museum is fairly well set up for self-guided visits, as well. Overall, the labels are lay-friendly and informative. The museum has some problems that are pretty common especially in low-budget museums -- the labels aren't great for people with low vision, and even as the casual proofreader that I am, I noticed some cut-off sentences and other errors that I'm sure the volunteers are well aware of. On the other hand, I really appreciated the way the labels made the time frames clear. Tewksbury Hospital has at various times since its opening in 1852 contained an almshouse, a long-term care and psychiatric hospital, a site of isolation for infectious disease patients, a nursing school, and residential substance abuse programs. At many sites with a complicated or multifaceted history, labels discuss concepts very generally, and leave visitors with the sense that something happened "back then" without a sense of when "back then" was or of change over time. I do wish that both the volunteers and the exhibit labels were more aware of current practices for describing disability and disabled people, because I heard and read a lot of the kind of thing that I once thought was harmless until I learned better, such as calling wheelchair users as "wheelchair-bound" as if a chair weren't a freeing mobility device, and I wanted to hear more about historical patient experiences in the psychiatric wards rather than just historical theories about them.

A cardboard cutout of a cartoon bee, about three feet tall.
A mid-twentieth century public health advertising campaign,
Wellbee encouraged people to "be wise, immunize" once the polio vaccine debuted. 

The museum bills itself as the first museum in the United States dedicated to public health. I find it surprising that there aren't more -- it's such an important topic, rich with artifact and easy for visitors to connect to our own lives -- but I haven't heard of any others. It is well worth supporting and visiting, if you can make it there in their open hours (do check their website, as their hours change seasonally).

Monday, May 14, 2018

Review of The Emperor of All Maladies

A physician at work recommended the book or documentary The Emperor of All Maladies: A Biography of Cancer to me, and that seemed like a good reason to pick this title out of the many books and films about cancer that I might put on my list. I chose the 6-hour 2015 PBS documentary over the Pulitzer-winning 2011 book by Siddhartha Mukherjee simply because I have more things on my to-read list than on my to-watch list, but honestly, the documentary whet my appetite to read the book. Mukherjee appears frequently as one of the series’ many very articulate interviewees, and it’s clear there’s material in the book the documentary didn’t cover.

The PBS version ran in three episodes of two hours each. It’s lengthy and not nearly long enough to cover all of the social, medical, surgical, and preventive aspects of cancer. Each episode has some overarching themes and stories that form a bit of an arc, but I think it could have worked just as well with six one-hour episodes. The film largely focuses on the story of competing and shifting paradigms in cancer research, especially in research around cancer treatment, although prevention is also mentioned. The series also touches on shifting cultural attitudes towards cancer, from a time in the mid-twentieth century when cancer was mostly a taboo topic to the vocal fundraising, activism, and patient advocacy of today, but this topic is primarily presented in the context of the research. 

In addition to the ups and downs of cancer research,
the documentary discusses various public initiatives for
 fundraising and awareness, including the Jimmy Fund,
founded in 1948.



I could imagine some viewers feeling that the documentary was incomplete because of the comparatively short time it spends discussing environmental and consumer goods regulations (or lack thereof) and other attempts at preventing cancer that have grown as we as a society have learned more about carcinogens. I didn’t know what to expect going into the series, so I wasn’t disappointed, but there’s still more I’d like to know. One aspect that did frustrate me was that the story was very centered on the United States -- for example, it talked about surgeon general’s warnings against tobacco use, but not about the very large “Smoking kills” warnings that many countries have require on cigarette packages for decades. 

The series shows the personal impacts of cancer by following a number of patients and their families through the course of their treatment, and in some cases, through the end of their lives. Personally, I found the balance of modern individuals’ stories with historical and research information (which also includes patients’, researchers’, and advocates’ stories) to be just right. A lot of the history is within living memory, but within such a fast-moving field of study, memories of a treatment breakthrough twenty years ago can feel very much in the past.

It’s not the first documentary I had seen on illness, but especially with the sick kids being profiled, I was struck by the weird intimacy of having film crews follow people in the hospital.In my work at a medical museum, I have coworkers in the department that handle news and public affairs for our hospital, so I’ve had a very small inside look at that process. From them, my understanding is that there are stringent requirements for ensuring the camera crews have the permission of the patient (or their family for minors) and the care team, and most importantly, that they all understand that the patient can revoke permission at any time in the process. This made me feel better as I watched the heart-wrenching stories, with and without uplifting endings.

Perhaps my favorite of the personal stories was in episode two. A surgical oncologist became a patient when she learned that she had breast cancer. She is an attending surgeon, and she supervises residents as well as performing surgeries, and I imagined that sharing this intensely personal journey in a high-profile documentary was something that she did with the spirit of an educator. She did additional interviews about her experience, many of which are available online. Her own mentor from when she was training performed her double mastectomy.

Overall, I would recommend this film to anyone interested in the scientific or cultural progress we have made in addressing the complicated mess that is cancer. It's hopeful without being overly idealistic about the potential breakthroughs and roadblocks in the future.

Friday, April 13, 2018

Finding graves for strangers

I find cemeteries beautiful, sometimes. I like eerie and haunting places, and also well-maintained parks, and cemeteries can be both. I had come across the website Find-A-Grave before, mostly when searching online for a person’s name, and I had seen that some of them have photos. There’s a feature “request a photo of this grave.” I have to confess, I never really thought about who took the photos and why, nor about why people would request photos of a far-off grave. Then, a friend of mine mentioned that she has started trying to fulfill some of these requests. She says it’s a nice way to go for a walk with her camera, and to help people get pictures of family members’ graves. This is when I realized that I was overlooking something that’s important to people by not giving Find-A-Grave more thought. The users are probably a mix of amateur genealogists, maybe some adoptees looking for lost family, as well as historians and other researchers.

I live very close to a good-sized Catholic cemetery. I’ve walked by it hundreds of times. I went for a walk inside the cemetery once, in the early morning, because it’s a place that’s green and quiet. Earlier this week, I looked it up on Find-A-Grave, and found that there are over 3,000 memorials in this cemetery in their database, 66% of which have been photographed. There were 23 outstanding photo requests, the oldest one made four years ago and the most recent one three days ago. I wonder how often people attempt to fulfill these requests, and whether any of the yet-to-be-found graves are miscataloged, not in this cemetery at all. The people’s death dates ranged from the 1890s to the 2000s. I set out with my phone, trusting its camera, to see what I could find.

It took a little while to get into a rhythm of searching. Where possible, Find-A-Grave has specific locations within a cemetery, but this wasn’t true for any of the ones I was looking for. I set the list to view alphabetically, and tried to walk methodically through the rows of graves, scrolling through the list as I went until I practically had it memorized. The tricky part was that only part of this graveyard is laid out on something that could be recognized as a grid. I tried to hug the edge and start with the last row, but the last row kept changing. Finally, I started in the far corner, where there is a series of rows that move almost diagonally outward, and paced back and forth, looking at one side of a row at a time because some of them needed fairly close inspection.

I only spent about 30 minutes my first time out, and I don’t think I found anything. There was one headstone with no first names, but one of the last names I was looking for. I took a picture just in case, but I haven’t uploaded it yet. I’ll wait until I’ve covered more ground. Part of me thinks I’d like to keep going back until I’ve walked every row. I like this cemetery, which has so many Irish names and reminds me that I’m part of the Irish diaspora population that I don’t often feel strongly connected to.

I wasn’t raised with any strong traditions surrounding death and burial. Other people’s traditions sometimes fascinate me, and sometimes I just find them baffling. I sometimes work with human remains (typically skeletons) or depictions of human remains in my job in a medical museum, so I’ve read a lot on the ethical considerations around collecting and displaying the dead. The museum field has a troubling history in this arena, but I often don’t feel an immediate tug when I hear about, or see, exploitation of human remains; what I’ve found helpful is to look at conversations about the use of other people’s dead bodies from the perspective of consent. Plenty of people do have very strong feelings about how their own or their loved one’s bodies should be treated, some based not only in personal or religious beliefs but in religious obligations. Thinking about whether a museum, a medical school or another institution has a person’s consent in how their remains are treated makes it easy for me to see how horribly wrong it is to mistreat a dead body. Since I have read a lot about this topic lately, thinking about other people’s traditions around death has become a fascinating but stressful topic for me. Museums have (sometimes recently or currently) used human remains to justify scientific racism, to dehumanize and other disability and deformity, and as a money-maker without compensating the families of the deceased. In a way, taking a peaceful walk with the hope of connecting someone with a relative’s grave has given me a more positive way to relate to strangers’ remains, beyond thinking about how to influence such a large problem.

In the two find-a-grave walks I’ve taken so far, I haven’t found any of the 23 people I’ve been looking for. I get excited every time I find one of the last names on my list, but they haven’t yet had the right first names. My walks have been short, because I tend to go in the early evening, and as the sun begins to set, names in headstones become hard to read long before it gets dark. I would be much more excited about the whole process if I had actually found something so far. This wouldn’t make a good game. At the same time, it feels a bit like a scavenger hunt. It’s a strange combination of feelings in this activity, peaceful, hopeful, playful, reverent. I don’t know who the people making the requests for these photos really are, or what the photos, if I end up being able to take any, will mean to them. My hope is that they’ll mean something.

Image is of the end of a row of stone grave markers of various heights. Behind them are trees and a bit of sunset.

Thursday, April 5, 2018

“What's the DAR?”

The 126-year-old social and civic club Daughters of the American Revolution has a partially deserved reputation for being stodgy, exclusive, and country-club-esque. I imagine that the TV show Gilmore Girls gave them a boost in name recognition and also reinforced their snobby reputation (even if we agree to set aside the 2016 revival “A Year in the Life” as its own thing). For those not in the know, the title of this post is a nod to Luke in the show. In reality, the DAR is an organization shaped by their rule that to be a member, you must prove you are the blood descendant of a Patriot in the American Revolution.

I became curious about the DAR because I had a coworker who was involved and loved it. She talked about writing reports on local history for her chapter newsletter, researching the lives of overshadowed women in the Revolution, and having a multigenerational group of friends, all things I like. A few years later, I got curious again after a colleague at a historic site I care about mentioned that without the DAR’s preservation efforts, the site probably would not have made it this far. (I won’t name the site because a rival organization to the DAR, the Colonial Dames, currently gives them more money.) It seems that whatever else the DAR does or doesn’t do, the interest in American history is not a thematic wrapping that the DAR puts on over idle tea parties on Emily Gilmore’s patio -- it’s a central and substantive part of their work.

I couldn’t put “join the DAR” on my list of things to do for the blog, because I didn’t know whether I’d be allowed in, since I don’t know if my heritage qualifies. Instead, I decided to do research into whether I’d be eligible. In this post (extraordinarily long, for this blog!) I chronicle my explorations of the membership process, which ended up raising personal questions as well as research questions.

One of the numerous genealogy publications published by the DAR.

Blogging about considering joining an organization is tricky. I’m very picky about adding new indefinite time commitments to my plate right now, but, like with Toastmasters, I’m serious about giving it a try, and I don’t want anyone I meet while exploring the group to think that I was playing at undercover reporting. My hope here is to have a new experience, and write about it for other people who might be interested, to save some people the time and give others the nudge they need to jump in.

I thought I might be eligible for membership because I knew that a great-aunt had traced a branch of my family in the US to back before the Revolution. My first step was to go to the DAR website and learn the process. It’s clear they’ve worked against their reputation, with photos of Black and Latina women on the front page and the phrase “regardless of race, religion or ethnic background” showing up repeatedly. Their requirements for membership are very precise: you need to be able to prove a blood relationship (adoptions are explicitly out) to a Patriot of the American Revolution. There’s a rigid list of things your ancestor could have done to qualify as a Patriot in the DAR’s eyes, such as serve in the Continental army or participate in the Boston Tea Party. To prove the relationship, you need copies of legal documents like birth certificates or census records -- the kind you can find with an Ancestry.com login if you’re lucky, or hours of library research if you’re not -- either all the way back, or connecting you to another DAR member.

I’m not the first and won’t be the last to notice the many categories of people who are excluded from the Daughters of the American Revolution. Immigrants need not apply. People with adoption anywhere in their family history would need the genealogical records of biological ancestors and proof of a link to them, which isn’t how adoption works for many families. People whose families used closed adoption or didn’t go through an agency may be out of luck. People with gay parents or parents with low income are likely to be in that position. The way “official” records work, and thus the way traditional genealogy works in the US, throws in even more exclusions. People whose ancestors lived in poverty, moved a lot for work, or didn’t belong to a church will have a harder time proving lineage. People whose ancestors were born out of wedlock or as the result of sexual violence between someone with Patriot pedigree and someone in a marginalized group may never find “official” paperwork because it doesn’t exist. For a taste of the tensions between “traditional” genealogy and marginalized groups, I recommend this Slate article, and the book Family Trees: A History of Genealogy in America by Francois Weil (which also discusses why many people love geneaology). 




Do I want to be a part of an organization that’s so cavalier with their exclusivity? And one that’s committed to being apolitical apparently without examining the ways the status quo is politically charged? The latter is probably a topic for another post, although I’ve explored the more general version before. Thinking about exclusion, on the one hand, their stance has clearly evolved since they were founded. People within the organization had to be a key part of this change. I could reap the benefits (history club!) while gently pushing my chapter towards being more reflective of the true diversity of our society and our past. My local DAR chapter is in Watertown, MA, and I could see how they are connecting with the large Armenian population there, if they are. On the other hand, there are other mountains to work on moving, and I’m not sure I want to give the DAR my money. It’s not clear from the website how expensive it is, or what projects my dues would support.

Fast forward several months. When my dad emailed me a scan of a 1990s computer printout, the product of my great-aunt’s research, he noted “This page is from a genealogical list of the descendants of James Antram, who came to Burlington, NJ from Essex in England between 1678 and 1680. You and I are in paragraph 46, ten pages later.” There it was -- according to Aunt Jean, I am the six times great-granddaughter of John Antram, James Antram’s grandson and a Revolutionary War soldier.

I was briefly a little disappointed. It took me a few days of turning it over in the back of my mind to figure out why. I have dim memories of Aunt Jean’s visit when I was maybe eight or nine. She called it “cousin-hopping,” staying with various relatives while asking them about genealogical data (although in retrospect, I imagine the visit was largely social, since we wouldn’t have had any information my grandmother didn’t also have). She told us my brother and I were the 11th generation in our family since our ancestor moved from England. I was fascinated because I had never thought about spans of time in generations before. The man who immigrated, James, was a Quaker. At the time of Aunt Jean’s visit, I had recently learned about pacifism, and had heard that the early American Quakers had largely been pacifist, and I was excited to learn that I had descended from someone who was probably a part of this tradition. So, I was disappointed because my eight- or nine-year-old self would have been disappointed to also be descended from a soldier (although certainly, there has been military service in my family more recently than that!). It’s interesting to see how parts of my family’s past have meant different things to me at different times in my life.

Equipped with the information that I should be able to become a member of the DAR if I want to be, I moved on to the next steps: submitting a prospective member information request form to be connected with a representative from my local chapter, and looking into the documentation I’d need to provide about my ancestor and my lineage. My first interactions with the membership process went smoothly, although (since I didn’t fill out the pedigree fields in the form) I was told “You will have to have some idea of why you feel that you are descended from a patriot,” which makes sense in their vernacular, but to me, was amusing phrasing.

As I mentioned earlier, I had personal questions as well as research inquiries to make. I’m not sure that the DAR’s pedigree requirement really serves their stated mission. I understand that as a group that cares about and celebrates American heritage, they would want to encourage their members to do genealogy research, but plenty of members skip that requirement the way I would have, by resting on the research a family member has done. Wouldn’t it be better to to admit any woman who can demonstrate that she has researched her family tree a certain number of generations back? Or, since genealogy research can be more difficult for some populations than others because of the a lack of well-preserved records, could the DAR offer genealogy research classes to prospective members -- they basically already do this part -- but require that new members take the class, rather than requiring that their research have a certain outcome? It’s easy to say that the DAR doesn’t want to change because their organization is racist and anti-immigrant at its core, but I don’t personally have enough evidence to make that claim. I don’t know whether those are really the motivations, or whether the tradition of using pedigree as a membership criterion is just so deeply entrenched in the DAR that its members are unwilling to face the actual impact of their policies.

An image of "Today's DAR" from their website.


Given that I’m pretty uncomfortable with one of their core policies, but very curious about the organization as a whole, I was deeply ambivalent about joining. I planned to go to one of the meetings that my local chapter holds that’s open to new members, so I could at least get a taste of it, but they’ve only had two in the year or so since I started looking into this, and I had a conflict each time. Given that, I decided to ask two more questions that would help me decide: whether the DAR is open to all women who meet their criteria, or whether they secretly exclude trans women, and how much membership costs.

Fast forward a little more. I learned that dues are annual, $25 to the state and national society and $40 to my local chapter annually. For me that’s enough to make me pause but I could swing it if I were enthusiastic -- I’m giving the specific numbers because I couldn’t find them on their website.

Regarding whether all women who meet their criteria are welcome, the registrar of my local chapter wrote to me, “I will check with the DAR executive board for the transgender policy, and let you know.” Not a terribly welcoming response, but I waited for her follow-up. She wrote, “The Registrar General's office has returned the following information:

DAR applicants must have a birth certificate confirming female gender, and same lineage rules apply.

If you have any questions, you can contact the Registrar General's office via the DAR website or DAR mailing address in Washington, DC. I hope this is helpful information.”


Okay, so I have serious concerns about this. That doesn’t sound like a formal written policy, but perhaps an answer to my relayed question, and makes me wonder whether they have a written policy on inclusion at all. Why no email address to ask? My contact’s emails on this subject were a bit officious compared with her previous emails, and no longer seemed to be trying to get me to join. More importantly, requiring a birth certificate with a female gender marker is highly exclusionary. Changing your birth certificate is illegal in some states. In most states where it is possible, it’s expensive, and some states require that people undergo gender confirmation surgery before getting proper identification. Surgery isn’t financially or medical available to many people, and regardless, isn’t an accurate indicator of whether someone is transgender. This policy kind of sounds like a poorly thought-out attempt to exclude trans women (based on the false assumptions that birth sex means something about gender and that you can’t change a birth certificate), but I don’t know whether that’s the case. It could easily just be an attempt to dodge the issue, saying, “if your state says you’re a woman, you’re a woman,” while ignoring the fact that getting the state to accept your gender isn’t an option available to all women. I’m not comfortable with a women’s organization dodging the question of whether trans women are women.

I used the contact form on the DAR website to give a short summary of my concerns and ask for clarification, but it’s been six weeks, and I never heard back. Obviously, I’m not interested in joining a women’s organization if they’re not open to trans women as well as cis women, but I struggled why the DAR’s apparent dodge on the issue is a dealbreaker for me when the organization’s issues around race, created by their insistence on demonstrable pedigree, was not necessarily a dealbreaker. After a lot of thought, I concluded that while both issues matter to me, I went into the process of exploring DAR membership already knowing about the race issue, and thinking that if I did feel inspired to become a member, I’d work to do my part to raise the relevant questions from within my local chapter. I feel similarly about doing my part to raise the relevant questions about being welcoming to all women. If an organization I cared strongly about was unwelcoming or deliberately excluding trans women, I’d probably try to make change before I considered leaving, so if I were otherwise inspired to join a group with these issues, I might still join and try to make change. I think that the real reason this is a dealbreaker for me with the DAR is that I’m not interested enough to try to work for inclusivity from within on two different fronts. I’ll leave that to the people for whom it’s a meaningful, fun intergenerational history club that already plays a role in their lives.