Episode 19: Photographing The Canaries. A Conversation with Thilde Jensen.

Aaron Goodman  00:06

Welcome to the Chemical Sensitivity Podcast. It's a podcast that amplifies the voices of people around the world of multiple chemical sensitivity, or MCS, also known as environmental illness, chemical intolerance and toxicant induced loss of tolerance or tilt. The podcast also highlights emerging research about the illness. I'm Aaron Goodman, host and founder of the podcast. This is episode 19. The title is Photographing the Canaries. You'll hear documentary photographer Thilde Jensen speak about her 2013 book, The Canaries. It's a compelling collection of self portraits and photographs of others with MCS, the book is received international acclaim. Thilde's photographs about MCS have been published by The New York Times,  Slate and others and have been shown in galleries in the US and abroad. 

Aaron Goodman  01:06

Thilde was born in Denmark and moved to New York City in 1997 to work as an editorial and documentary photographer. Six years later, she developed severe MCS and had to leave the city for two years, she lived in tents and trailers moving between New York State and Arizona. There she met and began photographing others like her who were trying to find ways of surviving with MCS. Thilde now lives in a small town in upstate New York in a home she built. In this interview, you'll hear Thilde discuss her reasons for creating the book and photographing herself and others with MCS, her intention to inform people who don't have the illness about the condition and the approach she took and how some people may view it as controversial. I hope you enjoy the conversation and find it a benefit. We release new episodes twice a month. Subscribe for free wherever you get your podcasts. Leave a review on Apple podcasts. It's a great way to help others learn about the podcast. Follow us on social media. Just search for The Chemical Sensitivity Podcast or Podcasting MCS. Leave your comments about anything you hear on the podcast and please share the podcast with others and some exciting news, the podcast is now on YouTube and you can read the captions in any language you like. Support the podcast and help us continue creating greater awareness about MCS. Please find a link in the episode descriptions at www. chemicalsensitivitypodcast.org. Get in touch anytime just email info@chemicalsensitivitypodcast.org and thanks so much for listening.

Aaron Goodman  03:01

Well Thilde Jensen, thank you so much for taking time to speak with me on the podcast.

Thilde Jensen  03:07

Well, thank you. Glad to be here. 

Aaron Goodman  03:10

I wanted to start by asking you leading up to the point where you chose to create your book. Could you talk a little bit about where you were living what your life was like at that time? 

Thilde Jensen  03:24

I lived in New York City. I was a photographer, I was married. And I'm from Denmark. So I came to New York to study photography and work photography world there and had been fairly successful. I was starting to work for a lot of magazines at the time. And then I got sick and I got sick quite fast and got very severe, quite fast and I had to leave New York. I had to start wearing a respirator everywhere I went, my marriage fell apart. My career sort of ended, as I couldn't, you know, go on assignments anymore. And I ended up living in a tent sort of in the woods for a time period. And then also in the desert in around Tucson, Arizona. I had to manage to get an Airstream trailer. And I survived in that for two winters down there. And then came back up to upstate New York in the summers to sort of explore and find what has become my permanent home. 

Aaron Goodman  04:34

It must have been really cold living in a tent in New York State in the winter. And is that what led you to as you say, get an Airstream and make the journey west to Arizona? 

Thilde Jensen  04:46

Yes, it was and but also because there's a large group of people in the Southwest in the desert areas and I was so severe so I felt like it would be nice to be around other people and get some some guidance and sort of be part of a community so to speak. And I definitely enjoyed that when I first came here, and unfortunately, the the desert environment didn't really quite agree with me, the dustiness of it and the dryness and the vegetation didn't agree with me. So I feel better up here in the North East. So I do better up here, but I'm not as mold sensitive as some people are, so I can handle our weather climate better. 

Aaron Goodman  05:29

And at what point did you decide to start taking photos of people with MCS, and when did the idea to create a book of photographs come to you? 

Thilde Jensen  05:40

Given that I was a photographer, and I ended up with this illness that I just hadn't really heard about before I'd seen the movie Saved. But when I saw it, I didn't realize that it was a real illness. And it was very disturbing to me with the movie. And so when I realized that this was a real thing, and that there wasn't any very, you know, any knowledge in the general population about it, I felt that, that maybe this was something I could do, and help sort of create some imagery that was expressive of initially, it was it was more personal to because I was alone, suddenly all the time and was sort of isolated, and stuck in with mostly myself. And I had the camera.

Thilde Jensen  06:28

So I started doing self portraits, to document my own life. And from there on, I realized when I, I took this one picture that not everybody knows is a self portrait, but of me in the bathtub with my mask on because that was an actual thing. I wish I would shower, I had rented a place in the bathroom had just newly been renovated. So with the tile work, and it was sort of a beautiful bathroom, but it was super toxic. So I had to use my respirator when I was showering, which was absurd, obviously. And then I thought, well, I need to document this because this is bizarre. And this is what we're sort of going through, I thought there was very, and then when I saw the picture, I realized here I actually have something that sort of goes beyond just the mere sort of documentation. This is actually a picture that speaks not just to people who have this, but to the outside world, which was, you know, the people I really wanted to communicate with. And so I continued that, but also didn't really want to be the person being photographed, you know, I did because I had to, but as soon as I was able to start photographing other people, that's what I did, 

Aaron Goodman  07:44

I'll post a link to some sites where people listening can check out the images from your book. And, of course, people are welcome to purchase signed copies of your book on your website, in the book there. I didn't know that was a self portrait of you, it's a very compelling image of you, as you describe is standing in the shower with a respirator mask. There's also an image of a young woman showering inside a tent and there's snow outside on the ground. There are also landscape images of the desert where some of the images were taken. Well, how did you choose what kind of images to take? And when it came to inviting people to photograph? What was that process like? How did you find them? Did you spend time with them before photographing them? And did you was it important for you to have a connection with the people before or during the photographic process?

Thilde Jensen  08:40

The picture you mentioned of the woman in the tent, showering with snow outside, that's actually my neighbor. And that was both her and my setup when we first moved to this community where we're living, and we didn't have a house and we didn't have any place to shower. So we just shower in this tarp tent, even when it got very cold. 

Thilde Jensen  09:02

In the beginning of the people I was photographing, were the people I sort of met along the way, who also shared this illness in this experience. And they were sort of my friends. And from there on when later on, I was able to go back to the desert for two trips, actually, you know, driving across country, and using those connections already made when I was there, living there for two winters that network, I would just put the word out that I was photographing for this book. And by then my work had already been in the New York Times. So that sort of opened a big door because people this was the first time the New York Times had sort of dealt with this and they not only had they have a slideshow online, but they actually had my text printed, which was sort of, you know, a big achievement. 

Thilde Jensen  09:58

So it was basically my word about the illness. So there wasn't this whole questioning whether it was real or not, which was, I don't know why it happened like that. But it did. And I was I was grateful of course for it. But but that opened the door within the community of environmental and this for me, people wanting to be part of it. Because of that, I think. So that's sort of how I worked with the project it, I would travel to different locations that I already knew there was people other than like, what my friends or friends of friends, and then from there, there might be other people I would meet. And that's sort of how the developed and then I had some people who also contacted me because of the New York Times article and, and said, if you're ever coming our way to photograph, there's definitely a story here. And one of those were dentists in Grand Island, Nevada, where there were like a community of sort of more blue collar workers who had gotten sick from this ammunition plant that had been there contaminated the soil and the water. And it was sort of not being dealt with everybody said it was safe, but it really wasn't. But they were not people who necessarily identified with that they were victims of environmental illness or chemical sensitivities. And he understood that that was what they're dealing with. But the majority of them were just so sick. And even he was living in a household where his daughter was using perfume and, you know, didn't really want to, you know, deal with the fact that her dad was getting sick from that. But that was an important part of the story itself to have them in there. 

Aaron Goodman  11:42

Do you have a favorite photo from the book? 

Thilde Jensen  11:45

I have two, well, there, its harder theres the one on the cover of Marie, where she's using her phone box. She's highly electrically sensitive, but also sensitive to light and to sunlight, and chemically sensitive, of course, and so she can only use her phone once a week for an hour. And it has to be outside where she can sit with you know, grounded her feet grounded in the grass or in the soil. And then she's under this umbrella and using your specialized phone. And I mean, when you look at his beautiful image, you don't understand that all what I just explained. But I think it for me, still captures there's something strange about the image. 

Thilde Jensen  12:32

And then obviously, the picture of Greg in the red car, I think is another one that I really love. And that just sort of just happened. A lot of the other pictures, I would spend time with people and things would happen. And they'll say, Well, could we take a picture of that? And then we would sort of redo it? Or they would tell me about something I said, Well, could we recreate that setup or, or go back to that scene or so so to speak. And we would sort of work in through it and they would show me what you know they would do or how they would react or you know, like. But this picture of of Greg in the red car where he would sleep. And he would wake up early in the morning. And then he was also electrically sensitive. So being on the phone was best for him early in the morning, because he got himself in a wired so he didn't want to do it at night. And then he would hold. And he was one of the people who also touch sensitive so he would have gloves on and then he would hold the handle of the phone away from his ear. So not to get so fried. And I sort of just woke up to that picture in the beautiful early morning light and took it and he was fine. But he was way out and I took the picture. But there was one of those moments where it just happened right in front of me. And I think it's a stunning picture in a very weird picture. And definitely one that has, I think for the outside view or invites people in to our story. 

Aaron Goodman  14:05

There are a lot of images of people who use aluminum foil, for example, on the walls of their homes to make them safer to seal in toxins. I wonder how you view the use of tin foil then, you also wrap the book in tin foil before you send it when I bought a copy of the book it came wrapped in tin foil. And as the photographer and creator, what was your intention and photography people's different uses of aluminum foil? And were you hoping that people who purchased the book and handle it have an experience related to the tin foil whether they have MCS or not? 

Thilde Jensen  14:52

Yeah, so I think I need to say maybe right away that my main audience the people I was trying to reach with this book was not the people who already have experience with his illness, but the people who don't. So I knew that I had to, you know, both show things that were part of the illness that was different, of course, I mean, I had a lot of and I think this brings up maybe another question, but I had people in the EI community who desperately wanted someone, and maybe me, but but definitely someone to take just really normal, happy portraits of people with this illness. And I'm not saying that there isn't a need for that. I'm just saying, that wasn't what I can do. Also, that wasn't, if we were to reach an audience outside of our own group, the pictures had to deal with how our lives are totally different now because of this illness. And we're not normal anymore. 

Thilde Jensen  15:52

So obviously, many of the people I came in contact with who were severe had had to somehow modify their building situation. And aluminum foil is one of the cheap sort of barriers to use to encapsulate something that's problematic out gassing chemicals, or to create a barrier, a shelter from the outside world. And it probably has a little bit of effect for the people who are electrically sensitive. But mainly, it's for chemicals. So when I was in the design process of the book, I knew I wanted it to be a work of art. And I also knew that I wanted to give the outside viewer the experience of a tactical, because I mean, the illness is so tactical, I mean, there is so much physicality in it, that I wanted the viewer who wasn't familiar with our world to get a little piece of that. And I thought wrapping the book, which is something that people who live in their cars and have books or things that are problematic, maybe outgassing stuff, but still want to have it in their little safe space. They do wrap books in aluminum foil. So I thought this was a good way of sort of presenting that and giving the outside viewer the experience of being in our world. 

Aaron Goodman  17:16

There are some paper inserts in the book, I believe four. And these are text based messages that are written by people with MCS. There's one written by a 45 year old woman in Massachusetts in the United States with deteriorating health caused by MCS and she writes, quote, "the bane of my existence is that my tongue swells and my throat closes off. Everything I touch bothers me. Polyesters, material, you name it, I cannot even tolerate 100% Cotton futon very well. Including smells, fumes, inks, I have nowhere to sleep, sit, etc. I lost my job too. And I feel my life. I'm crying as I write to you". And she ends the note with I know, this is all a crazy email. But I have to hurry too much to say please respond if you can. And it's an urgent plea. And it reflects the fear that I believe many of us with severe MCS experience and the isolation. And these are all themes that emerged through your photography, would you say? 

Thilde Jensen  18:32

Yeah, and I mean, this is a real email that I've received, unfortunately, a fair amount of these kinds of emails after the New York Times article, and other articles. This was one of those emails. And I get very emotional when you read that because it was just such a sad situation. And it couldn't help her but I asked her if I could use that email because I thought, well, this is important to share. And she was fine with that. So yeah, that's part of one of the texts in the book. Some of the other texts are also, you know, about some very tough stories, people being very, very stuck with this and very, very sick. 

Aaron Goodman  19:14

They are very compelling to read and very distressing. And as I read them, I felt like they're not unlike a lot of posts that people with MCS posts online in groups for people with the illness. And I wonder, do you think the situation for people with MCS has gotten any better? Since you created the book, people are still facing very urgent, critical situations and are often very desperate for for help. But do you feel that through work like your own and through more discussions and awareness that people feel less isolated? Or does the sense of isolation and fear still exist for folks?

Thilde Jensen  20:00

I think it's probably both. But I do think that from the time I got sick to today, there was so many more options available, there are all these forums. So that there is you have the ability to communicate with other people and get ideas to what you might do or help, or someone might guide you in the direction to find safe housing more, you know, a doctor to see or so in that way, I think that it's easier, that doesn't mean that there is very much safe housing or that unfortunately, I think a lot of the treatments are so individual, some of them help some of us. And some of them, you know, are just a lot of waste of time and money. But I do think being able to socialize is important. Initially, when you first get sick, it's very crucial. And I got sick, right when the internet was becoming a thing. So I was I was very fortunate with that, that I was able to use the internet at first, and then I became electrically sensitive. So I couldn't, but I was able to do a lot of research. And the only stories I printed out any story I could find where people had gotten better. And it was only about four stories, and I did everything they had done. And that wasn't necessarily what helped me. But it did sort of narrow down to that the things that were important was diet, exercise, avoidance, housing, some very specific things, and not having the internet, which, you know, the generation before me didn't, would just make it much harder to get better. Whereas I think today, you know, at least maybe there's too much information out there. And there's too many directions that people get thrown in. And a lot of them being waste of time and money maybe. 

Thilde Jensen  21:49

But at least I feel that there is more information out there. And there's a sense of you're not alone going through this. And there is, I think, I hope, that with my work and being out there and being available to so many it's been, you know, in the New York Times, Slate, Wired, there's so many different news outlet, have shown my work, that it's easy for someone to find a link and show it to their relatives or to you know, say, Hey, I'm not the only one, you know, like, this is the real thing. And I hope that's helpful. No, but I definitely have gotten a lot of emails and thank yous for doing that from people, I hope that it has helped at least some people. 

Aaron Goodman  22:32

Because so many people with chemical sensitivity are still misdiagnosed. And we do face a lot of stigma and misunderstanding. We know we're often told we have anxiety disorders, et cetera, we're not believe we're dismissed by clinicians, by family by co-workers. And you mentioned that part of your intention was to reach a wider audience, people who don't have the illness to create awareness. And I wanted to ask, you know, in terms of your process, and your thinking around how you chose to represent people with with MCS to my eye, and I think you know that they do look like they live outside of the norm, right? They don't look like they live in quote unquote, "normal society". And I wanted to ask, is there a risk that your images could possibly contribute to a misunderstanding of of people with MCS, or people might look at the images and see the people in the images as others? Or outcasts? I know, that's not your intention. But is that something you you think about you thought about in terms of how you wanted to represent people? 

Thilde Jensen  23:45

I definitely thought about all of that. But given that I was one of both the people photographed, but also had having gone through the experience myself. And at the severe end of it. I knew that if I was going to tell this story, I could only tell the story from both my personal experience, I had to be truthful about that. And also that it's very hard to take pictures of people who look totally normal, and have that be a good picture of that represents the illness, even if that person is suffering from the illness and dealing with daily raises as a photographer, I can't convey that in an image. If there's nothing in that visual that tells me, gives me the clues to that. So I wanted to tell the story with imagery. I didn't want it to be I'm not a photo journalist. I'm a photographer/artist and my sort of initial inspiration growing up was expressionistic painting, like it was The Scream and also cinematography like in my Bergman's, sort of, like melancholy psychological cinematography. So that's sort of where I'm coming from in my interest as a photographer, is in the experience of being alive, and the expression of that. 

Thilde Jensen  25:07

And I'm not someone who myself is so afraid of not appearing normal. And I was quite aware that when I got sick with this illness that my life had turned into a surreal sort of nightmare. And it was absolutely freakish and bizarre at times. And I felt that it was be untrue, to the story. And it wouldn't also make it very interesting to the outside viewer, if I was sort of trying to pare that down for us to not to look different if I was taught a centering in a sense. But that being said, of course, yeah, the people who are in the book represent the people who are generally quite severe. And there is probably many other stories that needs to be told. 

Thilde Jensen  25:55

But the kind of photography that I'm good at, or have become good at, wouldn't allow for that kind of storytelling. That's just not me. So I did what I'm good at, which is, I think, to dive in to where it gets difficult, but also doing it in a way that's both provocative, maybe, but beautiful. So I think there's a sense of beauty in my light and my colors and the way I compose and there's a lot of references. I think my pictures, whether they're deliberate or not, but to sort of fairy tale and to art and things. So there's a lot of ways for the outside viewer to come into this sort of nightmarish world of illness, which normally people don't want to, you know, I know, we've just been through a pandemic, but normally people don't want to be dealing with illness at all. 

Thilde Jensen  26:49

So that was sort of the artistic challenge for me was to present this horrific, painful journey that I had gone through and so many other people around me was going through it in a way that was appealing to the outside world. Can you say that there is some element of freakish behavior into my pictures, for sure. But I think that there are all real elements to our lives going through this. And I think now that it's become so normalized to wear masks, and that that's no longer, freakish thing. But of course, back in the day, when I took the pictures, and I was going through it, wearing a mask, and being the only one in the supermarket, you felt like a freak. And so I felt like it was valid to have that feeling in the images too. And of course, if people want to use that as a way to say, Oh, look at this, you know, you look like a freak, you can always do that. 

Thilde Jensen  27:48

But I don't think that not showing it would also be a disservice, I think, but that's my take as a photographer. And those are my most current work about homelessness in general, not EI, homeless as all sort of deals with some of these issues. It's like, we were want to show the reality that I'm being presented with, and I don't want to censor it. And that sometimes is can be very provocative. And in in our very sort of political correct world, sometimes you end up stepping into territory that maybe a little bit difficult, complicated, but I feel that if the people I'm photographing is okay with it, and if they feel that is truthful to their reality and their experience, then I'm not doing something wrong, it might be uncomfortable for the viewer, to have to deal with a reality that hasn't been sort of put together in a way that we would like it to be. 

Thilde Jensen  28:42

But there is also if everything is packaged in a certain way to fit our political correctness of how we would like the reality to be, we are no longer looking at reality. And that and I think that's sort of, so yeah, maybe there is, you know, my work probably is a little bit provocative, but not everybody likes it for sure not there's definitely people in the EI world who has issues with it because of that they feel like it's over dramatized and things and that's okay. I mean, it's totally fine if people don't like it, but I think it's, for me, it's more important that there is a reaction that there is a dialogue and that we get seen. And I think that's sometimes you have to I mean a painter, like if amongst the screen, I mean, in today's world, you know, that seems, you know, like that. Anything that deals with human suffering, it can be difficult and it sort of goes past some of the boundaries that we have created that we don't want these uncomfortable, are entering into our privates fear. 

Aaron Goodman  29:41

Well, thank you so much for talking about that. It's very helpful. How have people whom you photographed responded? 

Thilde Jensen  29:48

Well, I think everybody that was in the book who had seen it, which is most really like it, I feel like I you know, have done their story, justice and my own so I feel good about out the work and it has been received, you know, tremendously well also in the outside world, whereas it's gotten a lot of attention. I mean, granted, there's the whole, of course, always the discussion of the controversy around it. But, but it has also been accepted in to the collection at the Museum of Modern Art, both in New York and in San Francisco, and is one of the books that are now taught around the universities around the United States. And not because of the chemical sensitivity part. But photography, students are taught or are attracted to this body of work, because it has an autobiographical element to it. And maybe because it's feminine, in some the beauty aspect to it, and is different than books before having to do with chemical sensitivity or environmental illness, but in how we deal with other kinds of illnesses or issues, you know, emotional issues or things like that, and how we can deal with that as photographers and artists. 

Aaron Goodman  31:05

Another perhaps difficult or challenging question. There have been some people who've noted that in you can please tell me if, if I'm right, that all of the people whom you photographed are white in the book. And we know that many racialized and underserved communities in North America and beyond, including communities where black people and indigenous people are the majorities and live are frequently close to toxic pollution. And these communities are often impacted, because they often don't have the financial means to leave these communities in search of less toxic refuges. Be interesting to hear your thoughts on that. Because we know, we know that not everyone who has environmental most is white. 

Thilde Jensen  31:52

My neighbor, who's in the book, and who's the one outside tub, or with the snow. She's half Thai. So I mean, not everybody's 100% White, but it's the people I have been in contact with when I got sick. And this might have changed, you know, I got sick about almost 20 years ago, at that time, it was predominantly white, there was one person that I came across who was African American, but she wasn't very sensitive. And that's not to say that, as you say that there are many different areas around the United States where people have definitely in been exposed to toxins and probably have developed chemical sensitivities. I didn't come across it. Could I searched better for it? Maybe. Though this project was limited, both financially, but also by my own illness. And, again, going back in time, you know, there wasn't as much. 

Thilde Jensen  32:53

I mean, I couldn't use a computer for many years there. And even before that, I mean, it just wasn't, I mean, we're so used to there being all these ways of doing research today through the internet, that just wasn't quite as available back then if I'd known about, you know, any groups like that, or locales like that, I would definitely have gone. And that's why I went out of my way to go to Nebraska, where there was this group of more like blue collar workers who gotten sick, but who didn't identify as much as with, you know, the environmental illness part of it, but they definitely had it. But they also had a lot of other things, and they were dying from it. There is also an I don't know whether there is a genetic factor. I mean, I know that Sherry Rogers, the doctor who sort of early on she actually grew up right here where I live in this area and practice up here in Syracuse, and she was surprised at some point, she noticed that all of her patients were all sort of blondish, blue eyed and whether there was a genetic factor there. And again, maybe that has more to do with privilege economics, or maybe there is a genetic factor, I don't know. 

Thilde Jensen  34:10

But it definitely the reality I was seeing in the EI community as I was traveling around. And also sins had been that it is, for some strange reason, predominantly, sort of more white. So that's what the book reflects. I mean, I wasn't trying to I could have gone after the one or two people I met that weren't that didn't fit that. And make sure to include them in the book to have a better presentation. But if the pictures weren't, I let the wether I had a good picture be the reason for being in the book, not whether they represented a certain minority group. If I were to do the book today, and maybe it would be different because maybe the landscape is different today that I don't even know because I'm not really on the forums anymore. It probably would be a bit different, I would imagine.

Aaron Goodman  35:00

Thank you so much. Perhaps the last question you titled the book, The Canaries. Why did that feel like the right title for the book? 

Thilde Jensen  35:08

At the time again, it was very much the way people identified with the illness that we were the canaries in the coal mine. And so initially, it was just called Canaries, and then it seems stronger, It was The Canaries. So that changed, but it also felt like, again, to the outside view, or as maybe a title that would make them think so it's sort of just stuck that that was the right title for me. And it's a beautiful bird, of course.

Aaron Goodman  35:43

Well, Thilde, thank you so much for taking time to speak on the podcast. I really appreciate it. 

Thilde Jensen  35:47

Yeah. Well, thank you, Aaron, for inviting me on.

Aaron Goodman  35:52

That brings us to the end of this episode of the chemical sensitivity podcast. Thank you very much to Thilde Jensen for speaking with me.

Aaron Goodman  36:01

The podcast is produced by me, Aaron Goodman, Raynee Novak and Kristy Eckland. We release new episodes twice a month. Subscribe for free wherever you get your podcasts. leave a review on Apple podcasts. It's a great way to help others find the podcast follow us on social media. Just search for The Chemical Sensitivity podcast or Podcasting MCS. 

Aaron Goodman  36:26

Leave your comments about anything you hear on the podcast and please share the podcast with others and some exciting news. The podcast is available on YouTube where you can read captions in any language you'd like. Support the podcast and help us continue creating greater awareness about MCS. Find a link in the episode descriptions at chemicalsensitivitypodcast.org. And if there's someone you'd like to hear interviewed on the podcast or a topic you'd like us to explore, just let me know. Email me at info@chemicalsensitivitypodcast.org and thanks so much for listening.