A few days ago, I received a barrage of messages about the mysterious kerfuffle at the Mütter Museum. The Philadelphia institution has long collected, preserved, and displayed human specimens in order to “help the public appreciate the mysteries and beauty of the human body while understanding the history of diagnosis and treatment,” per their website.

Recently, the museum hired a new executive director, Kate Quinn. Then promptly, they took down their online exhibitions and popular YouTube channels. Soon enough, they announced on Instagram that they were temporarily putting their collection under review, “in recognition of evolving legal issues and professional standards pertaining to the exhibition of human remains,” per a statement released on June 6. They anticipate that the review will be complete by Labor Day.

People knew from my memoir Golem Girl (2020) that I had a formative experience at the museum, and that I had been lecturing on its collection for years as a Medical Humanities Instructor at Northwestern University.

The Mütter joins medical and natural history museums around the world who are debating the ethical treatment of human remains. There is the question of provenance: at the Mütter, some specimens may have been accepted into the collection under dubious or outright unethical circumstances. Mütter curator Anna Dhoty has written about one unclear holding. Other provenance issues have recently been resolved after decades of negotiation. And in some instances, there is virtually no paper trail at all.

All this gets at a deeper, more troubling question: can it ever be ethical to own, or exhibit, someone else’s body? And if so, how should those bodies be displayed?

Because most of the collection represents bodies with impairments, the Mütter has long elicited a complex range of reactions from the Disability community. For years, Disabled colleagues and friends said that they were appalled by the way that the museum displayed nonnormative bodies. Many felt that the Mütter engaged uncritically in the tradition of the freak show even when it has the opportunity create a space for Disabled people to construct families of choice.

As the Mütter debates the fate of their holdings, in other quadrants of my community (I am Disabled), complex ideas about the display of nonnormative bodies are emerging. For so long, we’ve been absent from movies, art, and books, save for the occasional ableist trope. We are starting to recognize that this museum is one of the very few places where we actually see ourselves, where we confront our reality and our place in history.

My first visit to the Mütter in the fall of 2006 changed my life. The establishment started out as the private holdings of a surgeon named Dr. Thomas Dent Mütter, but in 1858, he donated his specimen collection to the Philadelphia Col­lege of Physicians as a teaching tool for medical students. A few years later, the Mütter Museum opened to the public.

At the time of my first visit, I was teaching anatomy at the School of the Art Institute of Chicago. I wanted to learn from the displays, to understand more about the physical and medical forces behind variant bodies.

All the while, I was very aware of the fact that I myself could easily have been a specimen. All around me were bodies that resembled those of my friends: bodies impacted by genetics, birth events, diseases, and accidents. But the biographical information accompanying each “specimen” rarely went past a skimpy medical narrative. Worse, almost nothing described them as living, complicated people. My frustration and anger built with each successive case.

Then, downstairs, I rounded a corner before staggering to a halt: there, I confronted a tall glass case containing shelves of fetuses with spina bifida, which is my disability. These fetuses far preceded my own birth; before the mid-1950s, when a surgery was developed to fix the lesion, children like me were rarely treated, and tended to die very young.

Even though I taught anatomy, I’d always avoided looking up pictures of what a spina bifida fetus looked like. But now, here I was—my own fetal body, with its swollen balloon-like eruption sticking out of my back. I stopped breathing. My friend caught me just as I passed out. 

It didn’t come right away. But after months had gone by, the feeling I was left with was a sense of communion. That trip to the Mütter became one of the most profound and transformative experiences of my life.

However.

It still frustrated me that there was no information about spina bifida—its causes, its medical history. Worse, there was nothing representing people with neural tube defects who are alive today. While it is crucial that the museum supply sufficient medical information about its holdings, Disabled people are not looking to be depicted as mere medical problems. My memoir, Golem Girl, is about my life as a monster. This is how I’ve been treated most of my life, including, too often, by the medical establishment.

Many Mütter displays do seem to portray us as freaks. The best—or worst—example is a floor-to-ceiling case containing three complete skeletons and one skull. One skeleton is identified as a “normal” man, at around 5’10”. The 7’6” skeleton, of a man known only as the “Kentucky Giant,” towers over him. A Little Person* named Mary Ashberry stands at about one-third of the Giant’s height. Mary died sometime in the 1850s, in childbirth. The skull of her stillborn child is plopped unceremoniously at her feet. (Earlier, the skull was shown in Mary’s hands but the armature for keeping it there was unstable).

The three are placed side-by-side so as to underscore their extreme variance. “Mr. Normal” is the yardstick against which the other two are measured.

Troubling displays like this impact how the medical community, and the general public, perceive and interact with disabled people. I have spoken over the years with many disabled women (including Little People) who became pregnant or wanted to. Most of them faced difficulty finding or retaining medical providers. Often, their doctors either refused to help, or discouraged them from becoming pregnant. Mary Ashberry died, it would seem, because no one could help her deliver a baby that was a danger to her smaller pelvis.

Let’s imagine that Mary Ashberry has a family that would care about the disposition of her remains; the Mütter contacts her descendants, and says they’d like to continue to exhibit Mary. Imagine how they might feel if they were presented with that terrible three-body case.

Now, let’s imagine Mary and her infant’s remains are placed in their own dedicated display (and for God’s sake, get the infant’s skull off the floor!). This display would feature text written by Disabled women, especially Little People, discussing their experiences as OB/GYN patients, and detailing what it’s like to be pregnant in public with a nonnormative body. I suspect the family might feel differently about this kind of display.

I believe absolutely in the rightness of human display, but it matters how you do it.

The Mütter is the inspiration for my Medical Humanities course called “Drawing in a Jar.” It’s open to first- and second-year med students, who learn to draw using nonnormative fetuses in Northwestern’s collection—a collection very similar to the Mütter’s.

The technical demands of draw­ing allow them to get used to looking at the fetuses, and gives them time to sort out their reactions. They’re often surprised by the beauty of these entities. My students’ final assignment is to present a fifteen-minute biogra­phy of a person who has the same impairment as the fetus they’ve drawn, and who has lived within the last twenty-five years. Their subject must have had a public presence, whether in the form of a career, a documentary, a memoir, or a biography. Medical data is limited to five minutes of the presentation; the rest must be a story of a person, not a condition. Too often, med students are taught that the Disabled are tragedies to be eradicated.

My med students are increasingly trained using digital tools. I’ve asked if they’d have had the same experience if we’d used 2-D imagery or even 3-D prints of fetuses as reference for their drawings. Every single one has said it would have been far less transformative. Herein lies the Mütter’s potential power.

I’ve taken them to the incredibly problematic touring “Body Worlds” exhibit on multiple occasions. We discussed its many ethical conundrums, and through it all, it was obvious that my students have a ravenous curiosity about the human body, as does the general public. We all long to know what we are.

I am an artist. I make collaborative portraits with people who undergo stigma, due to the shape of or performance of their bodies. Art is my life—but renderings are no substitute for confronting a body.

In an article on WHYY, Quinn, the Mütter’s new director, points out that though some visitors love the museum, “there are also people who find it gross and choose not to come back,” citing TripAdvisor reviews.

The Mütter has the opportunity to change ableist narratives and perceptions of nonnormative bodies, instead of portraying us as monsters and freaks. Recently, and to their credit, they had created some videos that do exactly this, but now, those have been taken down, too.

It seems as if the executive director and certain members of the Mütter board find nonnormative bodies embarrassing or distasteful. Were they to remove us, they would not be giving us back our dignity. They’d infer that our bodies are repulsive. Disgusting. Like a pregnant woman in the time of Queen Victoria, it’s best we are hidden from public view.

Medical museums like the Mütter are, in effect, family albums for the disabled. Many of us (as am I) are the only impaired people in our families. I often go several months without seeing anyone who looks like me. Without my brothers and sisters of the spine, I would never have written my memoir, I would not be teaching at Northwestern, and I would not understand the immense potential of this treasure of such a collection. Should the board and executive director of the Mütter take the collection off display, this would be an incalculable loss. Let’s not tear it down. Let’s do it better.

I beg the Mütter Board; I beg Kate Quinn: every body can be an unlocked door. You have the power to let the bodies speak.  

*The community uses Dwarf, Little Person, Person of Short Stature, and Person with Dwarfism, according to personal preference.