Disease, Death, and Personhood

On the Mütter Museum

First: Thanks very much to Kelly Hills for being a sensitivity reader on this newsletter. She’s a bioethicist, public health specialist, and fact-checker, who also identifies as disabled, and her thoughts always worth hearing. She’s open for work too (here’s her email).

I’ve been thinking a lot about death lately. Specifically, about how divorced many of us are from it in the Global North.

Why are my thoughts so morbid? A couple of reasons I guess. I recently did an interview with a great radio show about my experiences as a laboratory researcher. I worked with mice. And yes, I killed them. I also know several people who have lost pets lately. One of mine is on basically cat hospice. And in the past year, I’ve lost some dear friends, and some family members, all of whom left holes in the world that can never be filled.

In some of those cases, I was not present. But in many others, I was. I have seen disease, injury, and death up close in real time. Has it been awful? Emotionally, yes. But I think in some ways, I’m better prepared for it than many (not people in medical professions, they’ve seen it all, they earn all of my respect). And I think my experience has taught me a lot.

Behold the posterface of cat hospice. You wouldn’t know it, but this wee beast needs daily fluid infusions to survive. She’s going on 18 months of severe kidney failure. She’s still living her best life, with all the porch time and treats. She’s a total diva about it. Photo by me.

Recently, when I speak with people about my experiences as a lab researcher (more than 10 years ago now!), I’ve found what bothers them most is not that I used mice, ran them through mazes, tested medicines on them. What bothers them most is that I killed them. Humanely, in a method approved by special boards of the universities where I worked.* I always see their faces change. Sometimes they glance at my hands. They know those hands have killed another living creature.

It’s weird, and unsettling, to have people look at me like I am a killer. To have Goodreads reviewers (yes I know I shouldn’t read the reviews), call me a murderer. We are all heroes of our own stories, and I would like to think I did my research for the right reasons. To save people’s lives, to save them from pain.

But it’s also weird for another reason. 100 years ago, you would have been hard pressed to find a person who had never, ever killed another animal by the time they were an adult, and everyone would have seen another animal die. If they lived on farms, they probably killed their own chickens and cows and pigs. In cities, they may have purchased live fish and chickens. They definitely killed rats and mice. And with fewer hospital stays and no hospice, people died at home. People watched their family members and friends breathe their last.

Now, with modern medicine and convenience, we don’t generally see death (except killing bugs, which somehow never count). We buy our chicken already disassembled, removed even from bones that might indicate it was a living thing. We can choose not to be in the room when family or pets pass.

And death, disease, they are messy. They are uncomfortable and can be traumatic. They are hard to explain. But they are REAL. And often, I don’t think our separation from them helps us.

This is where we get to the Mütter Museum, which you may have seen in the news. The museum specialized in death and disease. It’s got walls of skulls, 80-lb megacolons, and babies in jars. Right now, the Mütter is undergoing review of some of its materials.

I think people often miss that actually…the museum reviews its materials regularly. This is critical, because times change, standards change. We get really important things like NAGPRA, which requires museums that get federal funding to return Native American remains, cultural objects, and grave goods to their descendants (as they should be!). We realize that display of people’s remains should come with consent (how many of you still have your kids’ teeth? Or things removed during surgery?). But this particular review has come with a lot of hand wringing and panic. Should any human remains, especially diseased or disordered remains, be displayed at all? How dare we behold such things!

And this was where one of the comments by the current CEO of the museum chilled me:

In the Philadelphia Inquirer, Quinn conveyed reservations about exhibiting fetal and infant remains with congenital abnormalities, and expressed a desire to make the museum a place to learn about “health and well-being” rather than pathology and death.

There are plenty of places where people can learn about “health and well-being.” Those places are nice. But I think it is important, even critical, that we be able to learn about pathology and death as well.

I also should declare my bias: My partner and I married at the Mütter. Upstairs in the library (my partner’s parents were both librarians, and they have a wall to wall card catalogue up there). The library was important to him. The museum was important to me (I love science, biology especially, bodies the most. I always have). And I do think people should be able to behold human remains. For study, and for understanding. I believe it so strongly that in my will (which I have, which you should have), I have donated my body to science.**

Why do I believe we should be able to learn about pathology and death? For two reasons:

Learning leads to understanding, empathy, and acceptance

People who are unfamiliar with the biological realities of life often shy away from it. They are uncomfortable around blood. They don’t want to hear about someone’s pain. They don’t want to see people suffering from diseases or disabilities—especially those who sometimes have no choice but to do so in public. People who live with disabilities face a ton of stigma, largely because what they are experiencing is unfamiliar and unknown to most of us.

If people don’t see disease or death, it’s easy to separate. To say that will never happen to you. But we are all, all of us, temporarily abled. We will all encounter disease, we will all die, and most of us will experience different ability or disability before we do. We will see all of it occur in our families and friends. Pretending it does not happen, focusing on “health and wellness” can’t alter reality. All it can do is make disease and death more foreign, make us react to it with less understanding.

I remember very well my first visit to the Mütter. I remember reading about Cheng and Eng, a pair of conjoined twins whose death casts were on display. Born in the 19th century, they did do exhibition tours to make money. But then, they married a pair of sisters. They had a farm in North Carolina. They raised 21 children together. They spent their lives side by side, and died a few hours apart, surrounded by their families.

It’s easy to see the cast of their bodies and think “how horrible to display people who lived this terrible life.”*** But their lives weren’t terrible! Portions of them probably were – but aren’t portions of your life? Portions of mine have been. But Cheng and Eng also had their own independence, happiness, families, jobs – just like you do. Like I do. That is what I took away. These casts were of people, people like you and me.

I also remember the fetuses and babies. Tiny hands and feet. A number of these bodies have names listed, parents. It’s not just a reminder of the things that can happen to anyone. It’s a reminder that these babies were loved. They were wanted. They were mourned. And they’ve taught countless visitors—including medical professionals—about life and death. What life looks like as it develops, what happens when things go wrong, and why, sometimes, we lose our babies, no matter how much they were wanted, loved, and cared for.

Death is part of life.

Not beholding it, not seeing it, doesn’t stop it from happening. It just leaves us unprepared for its eventuality. Not only that, refusing to see it, refusing to face it, adds to our fear and discomfort with death, with disease, and with our own bodies.

Our bodies, and the cycles life undergoes, are astonishingly intricate and beautiful. Seeing bones and muscles, seeing how they move, thinking about the thousands and millions of tiny electrical signals that occur in our brains for every letter we type or step we take doesn’t need to be gross. It can be awe-inspiring. Yup, we are biological and messy and full of fluids. And those fluids and muscles and bones move. They run, they jump, they think and love and hate. They can sing and talk and dance.

Death is also important. Bodies decay (if we allow them to), and become different things. We are starstuff. But we are also future bacteria, future fungi, future plants. Knowing our future can be unsettling, but it can also be comforting. From death there is life. From life there is death.

Seeing skeletons and organs (and the many, many drawers at the Mütter of all the things people have swallowed), shows the wonderful flexibility of the human body. It’s not just a source of pain and death, it’s a source of joy and life. It’s a source of inspiration to many people who want to pursue biology and medicine.

Respect is key. It’s been a long time since the Mütter was a sideshow collection. In fact, it never really was. Mütter was a pioneer in plastic surgery, and made the collection to learn and improve his techniques, helping people with severe burns, cleft palates, and much more. He was among the first to use anesthesia in plastic surgery, and his work helped hundreds of people during his time and after (I highly recommend this book about him).

Consent is required. They are not remains, but Cheng and Eng, for example, did not consent to having their death casts displayed. Their livers are also on display. Just because people could benefit from seeing these things doesn’t mean they have a right to view them without consent. And the Mütter has leaned into the “horror” angle in the past, which, while it definitely attracts people, means that those people approach the bodies on exhibit with little respect. Sensitivity, respect and consent are essential to doing this right.

Eventually, some of the displays will come down, older displays not gotten by modern more ethical means. I hope they will be replaced by people who do want their bodies displayed. And I hope that the Mütter, and museums like it, will continue. Because health and wellness are nice. But pathology and death are inevitable.

Where have you been?

Is it reading from Rebecca Solnit about how we should fight climate doomerism? I love this piece, because y’all we aren’t hosed yet. We ARE making progress, and we CAN do more. Write your congress critters and tell them to keep going.

Maybe it’s reading about how bats are great! And you want them in your yard! To eat your bugs! Great tips here on attracting bats, but also note: if you GET a good colony of bats, those bats poop, which is another very good reason not to have the bat house on the side of your own house. And not too close to where you might inhale their, er, fumes.

Or maybe it’s reading about how cicada wings are self-cleaning surfaces! And scientists can use that inspiration to maybe create glass that is self-cleaning, too. This is super neat.

I hope it’s reading about Alicia Gangone! I met Alicia when I was studying to write my book, and I was struck instantly by her righteousness, her passion and her sheer brilliance. I'm so proud to call her friend. And now she's in the Chronicle of Higher Ed like A BOSS! I cannot wait to see her change the world.

Where have I been?

TBH I’ve been out, reporting on site for a story I’m working on. Several actually. Watch this space because I’m not horsing around (this is a hint).

*These are called IACUCs, Institutional Animal Care and Use Committees. This is because, as animal rights people like to point out, rodents (mice and rats) as well as other animals used in research such as flies, cockroaches, birds and zebrafish, are not covered under the Animal Welfare Act. But this does not mean they are unprotected. Far from it. They are under OLAW, the Office of Laboratory Animal Welfare, as well as HHS. Those are at the national level, and at the university level there are IACUCs. These committees are made up of five people per uni, and always consist of one veterinarian who works with lab animals, one or more scientists who work with lab animals, one or more lay person who does NOT work in science (you’d be amazed at the number of members of the clergy who end up on these, as well as members of philosophy departments), and one or more people who are not affiliated with the institution at all. Every time you want to do research with animals, you have to write up an IACUC proposal, specifying exactly what you’re going to do, how you’re going to do it, and why. IACUC will get back to you with their comments: Could you use fewer animals? Could you give them better or different pain killers after surgery? How will you enrich their lives under your care? How will you kill them, and why? IACUC protocols are tough. They are supposed to be.

**Whoever gets my skeleton be advised, it’ll probably be full of holes. Osteoarthritis runs in the family and I’m doing my best for calcium and fitness and blah de blah, but man, expect some Swiss cheese femurs, my friends.

***We know that one of their wives, at least, did not want their remains on display, so the fact that their liver is on view is an issue. Whether or not the family would want the death cast displayed, I can’t say, but it’s an important question.