How do you define a mental health issue? What does it mean to be normal in today's society, and what are the implications for those who don't fit that mold? The Exploratorium, a museum of science, art, and human perception in San Francisco, is exploring the issue in a new exhibit called "The Changing Face of What Is Normal." Launching in April 2013, it analyzes how we define, categorize, and treat those who fall outside conceptions of normal behavior. Host Shannon Eliot chats with Exploratorium Project Director Hugh McDonald and artist Pamela Winfrey about the goals of this groundreaking exhibit and what visitors can expect.
Hi, welcome to Mental Health Matters. I’m Shannon Eliot.
Do you consider yourself normal? What does that word mean to you?
Today I’m joined by two guests from the Exploratorium, a museum of science, art, and human perception in San Francisco. They are here to discuss an upcoming exhibit called “The Changing Face of What Is Normal.” It analyzes how we define, categorize, and treat those who fall outside conceptions of normal behavior.
Hugh McDonald is a Project Director and Senior Science Writer at the Exploratorium. He is also the lead scientist for an initiative from the National Science Foundation to develop exhibits on human behavior. Prior to joining the museum, he was a psychology professor at San Diego State University.
Pamela Winfrey is a senior artist at the Exploratorium. She has been with the museum for more than 30 years. She has curated performance series, exhibitions, artist residencies, and gallery installations.
Welcome, Pam, and welcome, Hugh. Thanks so much for joining me today.
Pam, can you tell us what prompted the idea for this new exhibit?
>>Well, I guess the core of the whole thing started when I was visiting with my family. I went to a museum called the Glore Museum. It’s in St. Joseph, Missouri. It’s actually a psychiatric museum. It has all these artifacts from the 1920s up and then reproductions of antiquities, ways that people were dealing with people who had mental health issues. And they had a Utica crib, which was a restraining device – a 19th Century retraining device – and they had a mannequin in the crib. We specialize at the Exploratorium in interactive exhibits, so I really thought about what it would be like to be in this coffin-shaped crib, unable to put your knees up, unable to turn around, turn over, and be in that place for days if not weeks, and I don’t know, maybe even years. But this concept of trying to put yourself into that cage really made me start thinking about what an interactive exhibit is and what it could be.
So we decided to develop one at the Exploratorium and try to see it’s not so much about replicating what that experience is because that’s just an impossible thing. But to be able to try to get people to imagine – if you can put people in the imaginative state of thinking about what might be like – maybe you could really think about what it would be like to be in that situation. So that was the kernel of the whole thing.
And then I started doing research. And I ran across this traveling exhibition that was about these suitcases that had been discovered in an upstate mental facility called Willard. And in 1995 they were going to close it and people were scrambling around trying to figure out what to do with all the objects. And somebody said I think there might be something up in the attic. And so they pushed through the attic and they found 427 suitcases that had been left behind. And most of them had never been – the patients had no access to these suitcases. So if you can imagine what you would take with you if you didn’t know how long you were going to be gone and if you would ever come back home what you would bring with you. So I went and talked to Craig Williams -- who is a historian at the New York State
Museum – and he was the one onsite. They called him when they found all these suitcases. And they called him and they said, “Ok, well, you should take maybe 10 of them.” And he took all 427 of them. So he’s sort of the hero of the whole project.
And I went and saw those objects and those objects are so normal. They are absolutely what anybody might want to take. And so that was sort of the heart of the whole thing. And then I was researching about the Diagnostic Statistical Manual -- which is the reference that most clinicians, psychiatrists, and psychologists use to determine different kinds of psychological conditions – and I realized that the fifth edition was actually going to be published in May of 2013, about a month after we open. So there was this confluence of things. So those three areas are what we’re really exploring. And I should turn to Hugh to talk a little bit more about the DSM because that’s where the intellectual core of the whole thing is.
>>So Hugh, what is the DSM? What does it stand for?
>>Well the full title is the Diagnostic and Statistical Manual of Mental Disorders. It’s published by the American Psychiatric Association. It’s essentially a diagnosis manual. It lists symptoms and allows clinicians to look at those symptoms and how long someone has been exhibiting them or suffering from them and be able to say this person is likely to be diagnosed with this problem. And it’s essentially a standardization guide so if I come to you as a clinician in one state with a certain set of symptoms, you’re going to give me the same diagnosis as if Pam went to a clinician in another state with the same symptoms. So the goal is to standardize the language and the diagnosis of particular sets of behaviors.
It also opens the door to treatment. Once you’ve gotten a code for a particular diagnosis that allows an insurance company to bill for your treatment. It allows you to be treated. So it’s not only a manual of information about the disorders, but it’s an insurance company gateway to being able to be treated for the problems you come in with.
>>I know there’s multiple versions of the DSM and they’ve changed over time. How many versions are there and how has the manual evolved?
>>Well there’s been five major revisions. The one that’s coming out in May 2013 is the DSM V. It has certainly gotten a lot bigger, but it’s also gotten a lot more nuanced. There’s a lot more information about the particular disorders or particular behaviors that constitute disorders over time. There’s a lot more information about which kinds of populations suffer from which kinds of things more than others. So research has been doing on in clinical settings for all that time, and that’s all been incorporated into the DSM.
>>So the DSM is a really controversial thing. You have different perspectives from providers, people with mental health issues, insurance companies, etc. Have you found in your experience – particularly with this exhibit and maybe beforehand – are there some people with mental health issues out there who actually like the DSM, who like having a certain categorization? Or is it completely anti-DSM?
>>One of the interesting things that you discover is imagine somebody who has been suffering from something that they didn’t know other people had, didn’t know that it had a name, didn’t know that clinicians were aware of it. And then to discover oh yes, we know what this is. Other people have this. You’re not alone. And in fact, there is a treatment for this. That can actually be a great relief for people.
But again, the other side of the coin is if something is normal and isn’t hurting somebody, what’s the value of assigning a diagnosis to it and then opening up somebody for treatment for that thing?
>>Right. And how much risk is there in labeling people?
>>Exactly. And labels follow you. Stigma follows you, especially today.
>>So could you guys give us an overview of the exhibit? What are the guests going to experience? What are the components?
>>Well the biggest part of it is actually a bit of a replica of what it would be like to come into this attic. It’s an environment, and it’s really designed to sort of encourage you. If you’ve ever had that opportunity, especially as kids, to go up into grandma’s attic and being able to open drawers and things like that, it has that sense of discovery. We’re trying to protect the objects and yet make them as accessible as possible. So we’re using wire mesh instead of any kind of shielding. And then you’re able to pull open drawers and sort of look around. Because really the hidden curatorial lens that may or may not be apparent in terms of how we talk about it is really about it could happen to you. It could be you.
>>Luck of the draw.
>>Yeah, luck of the draw and that everybody has the paths that they’re walking. And things happen.
>>These people are just like me.
>>These are just books and photographs, the same things I would have taken.
>>Exactly. I mean, that’s the thing. Sometimes you look at these suitcases. One of the suitcases just has – somebody was very stripped down in terms of what he brought with him. He had two pairs of shoes, two shaving mugs, two shaving brushes, and two pairs of pants, and two pairs of shirts. And then you had people who spoke five languages and had huge libraries.
>>Yeah, yeah. And I think also it’s a way to really talk about how things have been shifting. It’s such a complex thing. Humans are complex. The human mind is really complex. And I think a lot of it too is about that struggle to try to understand how do you deal with this. How do you humanely and humanly deal with this? And I think with Willard, it’s interesting. It was called the Willard Asylum and it had the word “asylum” in it. And back in those days, it was 1879 around there, when they first started accepting people. It was seen as an incredible step up. Dorothea Dix and people like that were roaming around and looking at how people were treated. And they were treated terribly. There was no place for them. They were in jail. They were in debtor’s prisons. You know, they were just treated abominably.
So the first people that came – one guy came in a chicken coop. And he had been in there so long that he couldn’t use his legs forever more. And then you have all of these different technological developments that really changed the way that the care was, but it was also about community. One of the big differences between this show and the show that was previous is that it has many more of the artifacts. But I think more importantly, it has the caregivers’ voice. There was a book that came out called “The Lives They Left Behind” and it really centered on the objects. But the caregivers at Willard really wanted to talk about what their lives were like at Willard. And so Karen Miller, who is a psychiatrist and poet – Craig introduced me to her – and then it turned out that she was in the middle of this big project. And she got access to the records, which is a very tough thing to do because if you know about mental health policy in the United States, your records are sealed in perpetuity. And it’s very very difficult to get access to that. But that turned out to be an essential part of this whole thing. Because it turns out that once you look at people’s records, you find out that they were gay. People were put into these places if they were not in those times, what was not seen as normal. So that’s part of the shifting change in this investigation.
>>In fact, change is really to me the key element here. You think about this word “asylum.” Now it sparks fear and it’s this horrible place. Nobody wants to go to an asylum. But remember that “asylum” also means a place of peace. It’s a place of refuge. And when it was first put together, this was a place that was intended to help these people who were not being treated well in other contexts. So back then, asylum was a wonderful thing. You were going away from being in prison for behavior you couldn’t necessarily control.
>>Right. So the exhibit is going to have a Utica crib and we have the suitcases. And I know there is a third component with people telling their own stories, people with mental health issues on camera sharing their stories with visitors. Tell me a little bit about that. What kind of stories are we going to see?
>>Well, that centers around the DSM piece. Presenting something that is essentially a book – a textbook -- in an interactive museum environment is a challenge. How do you actually make this interesting? And how do you actually convey the nuance and depth of this? So the idea is that there will be six monitors with people on them with six different perspectives on the what the DSM and what the idea of normal has meant to them. Three of them are clinicians or caregivers and three of them are people who have been diagnosed with something or who have been treated for something that is in the DSM. And they have very different views on whether this has been helping them, has been hurting them, and what the controversy is about. Visitors will see that not only the book itself has changed, but that there is this range of viewpoints on the books.
>>And PEERS incidentally was instrumental in terms of us being able to locate the folks that had particular interesting stories.
>>There are five versions of the DSM, each one gradually thicker than the previous. So how has that book changed over time?
>>Well, in a number of ways. I mean, the most obvious one is that the descriptions have gotten more nuanced and detailed for individual diagnoses. The DSM doesn’t have anything about treatments in it. A lot of people think it’s more about what the treatments are and that’s not the case. It’s that the method for classifying and identifying mental disorders ahs gotten more complex over time. Additionally, some things have been added. A number of things that weren’t seen as diagnosable conditions early on are in there now. But the reverse is also true. There are things that were in there at the beginning that have either been eliminated or the diagnoses have changed in various ways. So the worry that it’s just getting bigger -- that often is seen as this example as more things are being pathologized and it’s therefore bad, it’s actually more complicated than that.
>>I mean, they’re dealing with gender. They’ll talk about whether it affects men or women, whether it affects kids, or if you’re older. It really details a lot of it out.
>>Part of why it’s gotten bigger is that research has been going on and more is learned about many of these disorders and they ways they operate, who has them, and under what conditions. This is for clinicians to provide clinicians information to understand what it is they’re seeing and to be able to talk to each other and say, “This is what I saw in this patient here. What did you see in that client there?”
>>1952 was the first one. After the war, people were seeing a lot of different kinds of conditions. But they couldn’t talk to each other. There would be a doctor in Boston and a doctor in San Francisco. They were seeing the same things, but they had no language for it. So part of it was to be able to get a common language going but also to be able to create some statistics. Oh my goodness, five percent of the people coming back from the war have got this thing. But I do think it’s very controversial. It’s been interesting to talk and educate myself about all these different viewpoints. I’m fascinated by how the psychologists and psychiatrists are not at all a united front. They are really challenging themselves in terms of what’s included and what’s not included and how do we talk about this stuff.
>>It’s definitely not a monolithic block. They’re just as concerned with issues of over-labeling or over-pathologizing normal behavior as people who aren’t in the therapeutic professions. They’re trying to make something that works. That’s the overriding goal. That doesn’t mean that the worries of people that things are being over-pathologized or that the nuance of any individual person’s situation is being kind of masked by a one-size-fits-all approach. Those are very valid concerns. But there’s definitely an ongoing discussion.
>>So how have you views on what constitutes normal and a mental illness changed since you began work on this exhibit?
>>Well one thing that’s changed is an awareness of the nuance associated with that question. That term, normal, seems so sort of bland. But it’s so rich in terms of meaning across populations and across people. And it’s very powerful. Who doesn’t worry sometimes whether they’re normal? On the other hand, who doesn’t want to break out from normal? Normal has this wonderful but problematic sense of being both a good thing and a dull thing and you want to figure out where do you fit on the spectrum. A lot of it has been looking at the people who have been talking about that concept and how it applies to them and really understanding the power it has in their lives.
>>We had to really think about whether we wanted to use that term because it is such a loaded term for better or worse. What’s been interesting to me is in my research I’ve realized that we kind of seem to be obsessed by whether we’re normal or not. There’s a website that you can go to. There’s an iPhone app about “Am I normal?” There seems to be a lot of teens involved in that. Is it normal for me to feel this? Is it normal for me to feel that? There was a Pulitzer prize-winning musical called “Next to Normal.” And it turns out there are 36 books off the bat that use “normal” in their titles. And I think also that San Francisco has a special relationship to normal. I think a lot of people here do not want to be thought of as normal. And our city does not want to be thought of as normal. It’s a very interesting term and we had to think about whether we wanted to retain that word in the title.
>>It points out this idea that as humans we are intensely social. One of the things we are very aware of all the time is how does my behavior compare with the behavior of those around me? And once you’re aware of whether it fits or doesn’t fit, then the question becomes, is that ok with me or not? And is it ok with the rest of society? Are they ok with me not fitting? And if they’re not, what do I do about that?
>>That brings up the thought that the normal show is actually embedded in a larger gallery called the West gallery. And Hugh and I are co-curating this space. And it’s a little bit of a sea change for the Exploratorium to take this on in such a big way. But we’re basically looking at human phenomena – how do we behave, how do we think, how do we learn. We’ve certainly explored this in a lot of different ways under the rubric of perception, but now we’re really investigating this in a bigger way.
>>So that’s interesting. I’d like to learn more about that because the Exploratorium has traditionally focused on natural sciences, physical sciences. One plus one equals two. There’s things without judgment. So how is this being received and how did the Exploratorium decide to go in this new innovative direction?
>>Well it’s interesting. Our founder, Frank Oppenheimer, was aware of the importance of not only looking at the outside world, but how we perceive it. There’s one sense in which perception has always been a thread that runs through our work. But it is definitely a strong move in the direction of the social sciences and essentially saying the exhibit is not some phenomenon that is outside of you. The exhibit is you. And it’s the space between you and other people. It’s how you two use that space. So there is a lot of discussion about how do we shift visitors’ attention from the outside world to themselves. What are the risks and benefits of that? Is that fun? Is that enjoyable How do we make it so? What is our response and our responsibility when we bring up issues that might be uncomfortable for people? Well my behavior doesn’t fit with everybody else, is that ok with me? Really the challenge for us to is to make a safe place to experiment with those things, just as we’ve done with all sorts of other things. We’ve made a safe place for people to experiment with electricity and fire and chemicals. Now we want to make a safe place where people can experiment with their own behavior, their own thoughts, and feelings.
>>I think the other part of that is for me, the museum has been really good at saying we have an optic nerve and that means we that have a blind spot at the back of our eyes, so we all see alike. Physiologically we all see alike. I think this is a new stage where we’re actually going, well, physiologically we might all see alike, I mean generally, but then there’s all these different things that are starting to come up. We actually don’t see all alike because of where we were raised, who our parents were, all the things that go into making us who we are as individuals and as groups. I think also that the National Science Foundation gave us a grant on the science of sharing, which Hugh is part of – actually is running it – but I think that they are starting to recognize it’s not enough to just educate people about science. So global warming, climate change, they have been giving a lot of money to those topics, but people haven’t changed their behavior. So I think there’s a recognition that we really need to start thinking about what makes people act the way that they do. Why do they do these things? And I think that that’s also a beautiful wedding of what used to be called the hard sciences and the soft sciences.
>>Yeah, absolutely. One of the issues that those big problems share – there are technological solutions to things like global warming or resource depletion – but at heart those are problems of human behavior, of human trust and cooperation. So understanding how those works and how science can tell us about how humans interact and how they perceive each other is just as important as understanding the technology involved in cutting greenhouse gas emissions, for example.
>>So why did you choose to feature people with mental health issues in addition to clinicians in this exhibit?
>>I think one of the phrases that we’ve been hearing a lot is “Nothing About Us, Without Us.” So the idea of understanding that we all have different perspectives really sort of shines the light on the idea that our views on how this works are not the only views out there. And there are other people who experience the same topics we’re talking about in very different ways. The exhibition in the museum would be incomplete unless you had a lot of viewpoints on it. In fact, one of my favorite taglines of the Exploratorium is that we are a community museum dedicated to awareness. And the idea of awareness is that it’s not just mine, it’s ours. How does yours differ from mine?
>>Yeah. There’s one other thing I want to make sure I don’t neglect to talk about. The show is also going to include John Crispin’s photographs. He’s a photographer on the East Coast and he had also been working with Karen, the psychologist and poet. We’re going to be featuring his photographs – and they’re really lovely photographs – of the artifacts as well as Karen’s poems. So you’ll have a variety of disciplines with which to view this exhibition, too.
>>It’s worth saying that the exhibition is not intended to be a comprehensive view of the concept of normal or the nature of mental health or to indite or support any particular therapeutic approach. It’s really designed, like everything we do, to prompt the public to question things that they had taken for granted before. So they walk in with a particular view of normal or mental health and the idea is to say, where did that come from? And is that all there is to it? And here’s a different way you might want to think about it. So it isn’t attempting to tell the whole story. It’s attempting to get visitors to think about the story and explore it on their own.
>>And actually one of the areas we haven’t really talked about is there will be a large are anywhere people can ask cogent questions and people will be able to respond and put their responses up. So that’ll be a big part of the exhibition itself. I think giving voices and giving the opportunity to hear a lot of people weigh in on this topic is important, actually critical. That’s one of the other things that I’ve found when I’ve been involved in this. Everybody’s lives are touched by this topic. It is as ubiquitous as milk. You know, it really is. It’s everywhere. I don’t know if I have found one person who doesn’t think strongly or intensely or have some personal story about it.
>>It’s also very dynamic, too. Even something as simple as going to another state, you discover the views just a few miles away about what constitutes normal behavior are different. And of course that’s magnified when you go to another country. Things that are completely normal and unremarkable here are radically unusual in another place. I think one of the other overall goals is understanding not only that we differ on those things but providing an opportunity to differ civilly and generatively. I would say we are in a place in many areas right now where civil disagreement is not necessarily the most common things that happens. What we want to do is give people an opportunity to understand it’s ok if there’s a difference here, let’s explore it. Let’s not set up barriers between us because of it.
>>Also, this is the first segment. There’s another segment that will be The Changing Face of What is Normal in terms of society. So we’ll have an opportunity to extend that concept of normal outside the realms of mental health.
>>If this exhibit is successful, what does that look like?
>>Well for me, if people can have a bit of a sea change in terms of saying those are those people and I am me. If they can understand there’s more of an exchange and it’s just the luck of the draw sometimes about what happens to people. And if they can really fit themselves into those other shoes, that would be real good.
>>I totally agree. Maybe another way of saying that is for me, people leaving an exhibit or exhibition and saying I never thought about it that way before. I might not know everything there is to know about it, but now I’m really interested in it. Now I want to keep exploring it on my own. To me, that’s a successful exhibition. And here, the idea is I never thought about normality or the way I was similar to or different people before – or at least not at this level of detail – and now I want to think about it a little bit more. That’s a success.
>>And lastly, when can we see this exhibit? When does it debut?
>>April 17 with the rest of the Exploratorium.
>>And it runs for the first—
>>Runs for a full year. So you have a year to check it out. And we’ll be doing a lot of programming in the fall that will be correlative and will be able to grapple with some of these issues.
>>Well thank you so much, Pam, and thank you so much, Hugh. I cannot wait to see it in April.
>>To stay updated on information about the museum and its new location, visit the Exploratorium website at www.exploratorium.edu
To learn more about the suitcases from Willard Psychiatric Center in New York, read The Lives They Left Behind: Suitcases from a State Hospital Attic by Darby Penney and Peter Stastny.
To see the some of the Willard suitcases in an online exhibit, visit www.suitcaseexhibit.org.
Thanks so much for watching. We’ll see you next time.