Pivoting to Wellness

Exploring the Boundaries of Morbidity and Education 

This originally ran on The Culture We Deserve, 23 June 2023

By Hayley Campbell

On a hot afternoon in Philadelphia, when Hillary Clinton’s scheduled presidential campaign rally put a halt to our attempt to run up the Rocky steps, I suggested to my friend that we go to the other place: the Mütter, a museum of medical history at The College of Physicians of Philadelphia. I believe that a part of him has hated me ever since. He didn’t want to see the megacolon, a nine-foot-long diseased organ belonging to a man who had performed as the Human Balloon in a sideshow attraction before dying of chronic constipation at the age of 29, filled with 40lbs of shit. Nor did he want to see the Soap Lady, the remains of a woman who died in the 18th century and whose fatty tissue turned to a waxy, soap-like substance in the ground before she was exhumed nearly 100 years later, her mouth gaping in a silent, haunting scream. It was just not his bag. He wanted to leave. He wanted to throw up. He wanted to get a cheesesteak, despite everything.

The Mütter Museum is not for everyone, but it is for me and thousands of others – it gets more than 130,000 visitors per year. Currently, like everything in 2023, it is under threat. For the last six months, the museum’s new leaders – College president and CEO Mira Irons and Mütter executive director Kate Quinn – have been making efforts to revamp the 160-year-old museum. So far, it's been revamp by destruction: the removal of YouTube videos, the cancellation of programs, and opaque plans to focus on “health and well-being” rather than illness and death. 

Prompted by a ProPublica investigation and the museum being named in an Inquirer follow-up about institutions that still have the remains of Indigenous people in their collections, the new leaders have been looking at the museum and raising concerns. “We are actively moving away from any possible perception of spectacle, oddities, or disrespect of any type for the collections in our care,” said Quinn, in an email to staff. They are also questioning the continued existence of “disturbing… very disrespectful” exhibits, specifically the one on teratology – the study of physiological abnormalities – which consists of a series of fetuses in jars. There are conjoined twins. There are fetuses without brains. There are physical impairments a person could survive, and those they could not. It is, after all, a medical museum.

It is probably because the plans are so vague, and that the only clear and definite movement is destruction, that people are extrapolating this to certain doom, staff are resigning, and thousands are signing a petition on change.org to “protect the integrity of the museum”. I am one of them.

The Mütter is not the first medical museum to change its exhibition in a public way. Reasons vary, and not all are unsound – largely, museums are reckoning with an unethical history. Last year, the Wellcome in London posted a thread on Twitter. “What’s the point of museums?” they wrote. “Truthfully, we’re asking ourselves the same question.” They were announcing the closure – after several years of research and reflection – of their ‘permanent’ exhibition, Medicine Man, a display made up of objects amassed by Henry Wellcome, a 19th-century pharmaceutical entrepreneur. “The individual items within it show all the extraordinary ways in which people, through time and across cultures, have sought to understand the workings of the mind and body, to protect themselves and care for one another. But by exhibiting these items together – the very fact that they’ve ended up in one place – the story we told was that of a man with enormous wealth, power, and privilege.” 

The Hunterian, also in London, has been closed since 2017 for renovation. The most contentious “item” in their collection is the skeleton of Charles Byrne, the 7’7” Irish Giant. In life, Byrne knew the anatomists were after his body, and detested the idea of ending up in a cabinet of curiosities so much so that he asked to be buried at sea. A dying wish some thought they’d granted. Bribed undertakers weighed down the coffin with stones so the pallbearers wouldn’t notice, and Byrne’s body was taken to the anatomists. 

When the Hunterian reopened last month, the Irish Giant was no longer on show. Whether or not he will be buried at sea as he requested over 200 years ago, we shall see – no one has said either way. With no firm decision made as to what to do with his bones, Byrne might be removed from display but for now he will remain in storage. In another medical display in London, the skeleton of Joseph Merrick, otherwise known as the Elephant Man, has been removed from view, but a 3D rendering is available to see. These are two men who spent their lives being stared at, and vocally wanted no more. 

Many museums, medical and otherwise, change their exhibits in an effort not only to “revamp” what they have but to correct the misdeeds of the past. But in the case of the Mütter’s new leaders, it is also a blunt, panicked attempt to avoid outrage and scandal, a drastic overcorrection that not only steers the museum toward the vapid, but also fundamentally misunderstands what the Mütter is, and what medical museums give us. 

It is true that most of the collection – as with all anatomical museums – came before the age of consent, before we could donate our bodies to science by signing a form, and that many remains were taken and kept by unethical means. The collection retains parts of Indigenous people who were cheated out of their own burial customs and are yet to be repatriated (though are not on show), executed criminals, and people who never said they wanted their skeletons to be articulated and placed in a cabinet (the Mütter has their own “giant”, a man with acromegaly, though they recently removed a prominent banner saying so). This is all part of the shady history of medicine, a scientific field built on unnamed, stolen corpses – an uncomfortable lineage we benefit from every time we go to the doctor. No one is saying this argument isn’t complicated.

Some people in the Mütter have names. Harry Raymond Eastlack, a 39-year-old man with fibrodysplasia ossificans progressiva – an incredibly rare inherited disorder where bone grows outside of the skeleton – gifted himself to science when he died in 1973. His skeleton looks as if it was draped in sheets of cloth that have been ripped by storms and wind. To look at him is to imagine pain. His skeleton is one of the few with his condition in existence and has been invaluable for the study of this rare disease. This was the point: he wanted people to see and understand.

If you have never been to a medical museum, you might consider it a morbid gawp at the bodies of the dead – like my friend did. So, apparently, do the new CEO and executive director of the museum. But I have been present at autopsies of both adults and babies, and I have been to the greatest medical museums on the planet, including the Mütter, and have found that being in the presence of a dead body, or a piece of one, is an entirely subjective experience, and a possibly transformative one. To look at pieces of bodies, whether fresh or centuries old, is inherently emotional: at first, there may be confusion as to what it is you’re looking at, maybe revulsion, astonishment, but above all, I personally was overcome by wonder at the sheer fact that this stuff keeps us alive. To take this away from the public, to flirt with the idea that it would be easier if it was for medical practitioners only, is not only elitist and infantilising, but removes the basic human right to try to understand how we are here at all. To visit one of these museums is to be made aware that “normal” is an illusion, that there are genuinely countless variations to the human body. To look at these exhibits and regard them as merely offensive spectacle is to view them without empathy. That these exhibits have been called “disturbing” by the museum’s new custodians says more about the viewer than what they are viewing. 

That is not to say the Mütter is a perfect museum. It could do better. Like many museums devoted to anatomy or the history of surgery, it has a gift shop I would categorize as gauche (retractable ballpoint pens that look like blood-filled syringes, plushie megacolons that double as an in-flight pillow that can wrap around your neck). That it hosted annual sleepovers around Halloween, complete with a seance and a flashlight tour, is one of those things I have become accustomed to ignoring, like anyone who buys books on death or anatomy (we wince at the offensively bland or tacky cover a marketing team has chosen and at some point we simply lose the jacket). This cringe-worthy attempt to appeal to the masses by making what is inherently a strange, unusual place more “weird” and “spooky” is the most normal thing about it – death has a wider PR problem, and some people don’t know what to do with it. It’s assumed that people are more comfortable with death if you make a joke of it, if you make it a fun dare, or if you regard it as something just for a Halloween holiday or a novelty gift. But the Mütter Museum is not one that trades purely on death and dares: it is not the Museum of Death in LA or New Orleans, which play looped footage of massacres in foreign countries, and hang John Wayne Gacy clown paintings like they’re children’s drawings on the refrigerator. Those are devoted to the ephemera of true crime, the collected talismans of serial killers. The Mütter is a collected history of science and humans trying to figure each other out so we might live. The Mütter is precious and must be protected.

But I wondered if perhaps I was wrong about the exhibits themselves – if there are parts of the museum that do reek of the freakshow display, that maybe my kneejerk reaction to change was just a kneejerk reaction to more change (how dare they). So I asked my friend Riva Lehrer, an artist and writer whose work focuses on issues of physical identity and the socially challenged body. 

Born in 1958 with spina bifida, she and other babies with this condition were not expected to survive for very long; the surgery that saved her was only invented in the mid-1950s. Here she is in her sixties, an unlikely elder in largely uncharted physical terrain, painting in her studio while she talks to me over Zoom. In her memoir, Golem Girl, she writes that it was at the Mütter that she first saw a baby with her exact condition: spina bifida lipomyelomeningocele. Despite being an anatomy professor who taught medical students how to draw the human body in the cadaver lab in order to see without judgment, she had never gone looking for photographs of her own condition – deep down, she didn’t want to know. She writes that finally seeing these jarred bleached-white fetuses in the Mütter, who came with no biographical information bar their medical anomalies, relieved her of a loneliness she never knew she had. “They brought me to a place past words, past analysis or politics, or even beauty. I longed to slip a jar of siblings into my purse.”

“For people like me, like most of my friends, these museums are family albums,” she tells me. “We're often the only person in our family who has the impairment that we have. And even when it's genetic, very often, we're the only person in whom it's strongly expressed.” She references Andrew Solomon’s theory of vertical and horizontal identity, who wrote in his book Far From the Tree: Parents, Children and the Search for Identity that vertical identity is passed down from parents and cultural norms: ethnicity, language, religion (to a degree). Horizontal identity is something inherent or acquired that is foreign to the parents: like being queer, or having a physical disability, like Riva’s.

“You have to go looking for communities of identity with whom you probably have no familial connection,” she says. “They’re the ones who give you ways of thinking about who you are.” 

When she found the fetuses in the Mütter, she was moved. She understood what her mother had told her, and about what had been done to her surgically – and she felt a deep kinship with them which has never left her. This kinship is instinctual, but it is also complex. Some of these babies were donated recently, by still-living mothers who wanted their loss to have meaning. For the older ones, it is possible the mothers of the babies never saw them, that the delivering doctor told the mother their baby had died, and that viewing them would be detrimental to her emotional wellbeing. It’s a damaging disappearing act that is known to still happen today, either by doctors or a misplaced act of protection by fathers or other family members. It is therefore possible that the only time these babies were looked upon with love is when their physical kin found them in their jars.

“I can go months without seeing somebody like me – and almost nobody really understands what that's like to just see nobody like you. It's not like being the only person from East Asia in a white neighbourhood, you at least know that your family was probably East Asian and that you have an East Asian culture, and you can go and look for things on TV, and you have your foods. I don't have that. This is what we’ve got. This is it. You go to one of these museums, and you see yourself.” 

She tells me about a woman she knows who saw herself in a jar of skin flakes, the result of a long-ago patient’s dramatic dermatillomania. It wasn’t until she saw this that she realized her condition was a real thing that other people had. 

“Even if it's disturbing, you're not gonna get that anywhere else. It's just irreplaceable.”

What the new leaders of the Mütter fail to see is that what they have is a museum that is in itself progressive, merely by existing. They seem to believe that simply putting the bodies of those with physical impairments on display is creating a spectacle, an old-fashioned freakshow, something we in our supposedly enlightened times have moved beyond, but this is not the case. “For me, so much of what's in that museum is just plain beautiful,” says Riva. “And it speaks of the beauty of the flexibility of humanity. If you can't get that through your head, you should not be there.”

Riva is furious at the proposed changes and furious, most of all, about her beloved jarred fetuses being threatened with removal. But she, like me, does not believe the museum is without faults and tells me about Mary Ashberry – another named person in these cabinets. 

Ashberry was a woman with achondroplastic dwarfism, whose 3’6” skeleton now stands in the same cabinet as the Mütter’s 7’6” “giant” along with a “normal” skeleton for comparison. It was likely Ashberry was a sex worker; when she went into labor she was in a brothel in Norfolk, Virginia. Doctors decided that because her pelvis was so small, and the head of the child so large, they would crush her baby’s head to fit it through the birth canal. A caesarian was still  a risky operation in 1856. They tried that next. But Mary’s baby died – and so did she, three days later, from peritonitis. Currently, on the floor of the cabinet in the Mütter, beside her skeleton feet like a football, is Mary’s baby’s skull.

This placement enrages Riva so much she can barely talk about it, but she doesn’t want the removal of Mary Ashberry. Removal is not synonymous with respect. What Riva wants is more context, more information, and for Mary to be in a cabinet of her own, perhaps her baby’s head raised on a plinth beside her. “I would make a hard case to contact disabled women, and women of short stature who have been treated very badly by the OB-GYN world, and get them to talk about what it's like to be a mother as a little person.” It is this kind of information that would unlock worlds. Riva advocates for involving a stakeholder community in the museum’s curation, rather than deleting their experience from the shelves – a kind of ableist reaction that implies we cannot handle the sight of them. She wants to make Ashberry a living, moving, meaningful discussion, rather than a marginalized dead woman with her baby at her feet.

What this museum needs is someone who gets it. Someone who knows what they have and can present it with the information, tact, and respect that these people deserve. By wishing to manage “any possible perception of spectacle, oddities, or disrespect of any type” the new directors are creating an impossible task: the job of this museum is not in the emotional management of its thousands of unique visitors. Properly contextualized in a medical museum, you can learn of the crimes committed against different people, cultures, and physicalities, and also the life experience of those different from yourself. To hide any of this away is to learn neither. These museums are irreplaceable communities of identity. They are not freakshows; they are our mirrors.