Introduction [0:00:00]:  

Kenny Fries  

[0:00:00] I mean, that's what I tell people. You know, part of me says don't. And a part of me says just follow what you really want to do with it. You have one life. 

Chloë Atkins  

[0:00:18] Welcome to Season 3 of Broadcastability, a podcast by, for, and about people with disabilities. 

Lark Huska 

[0:00:25] Broadcastability is a PROUD Project production based in Toronto, Canada. Visit theproudproject.ca to learn more. This podcast was recorded and produced on the traditional and ancestral territories of the Huron-Wendat, the Seneca, the Anishnabeg, the Chippewa, the 

Haudenosaunee, and the Mississaugas of the Credit River. This territory is covered by the Dish With One Spoon Wampum Belt Covenant, a treaty made between the Anishnabeg, Mississaugas, Haudenosaunee, and Allied Nations to protect the resources of the Great Lakes and the surrounding areas. This podcast was also partially produced on the territories of the Musqueam, Squamish, and Tsleil-Waututh peoples. We also wish to acknowledge the Indigenous Nations across Turtle Island, also known as North America, where we conduct our research and record this podcast. 

Chloe Atkins:  

[0:01:20] Today we’re speaking to Kenny Fries, an American who lives in Berlin. He is poet, writer and videographer. He has published over 4 volumes of poetry and 4-5 other books.  This year, he is releasing Returns, new and selected poems.   

What drew us to interview Kenny was his more recent research on Aktion 4 which was the Nazi’s program which euthanized disabled individuals in Germany through the 1930s.  It is important work about the eugenics movement and the belief that was quite common in the latter part of the 19th and early part of the 20th centuries, that some life is ‘unworthy of being lived.’  He is writing a book entitled: Stumbling over History: Disability and the Holocaust. 

Lark Huska: 

[0:02:02] This is the second time we’ve interviewed Kenny because unfortunately, the original interview never properly recorded.  Fortunately, he is an interesting story-teller and so it was enjoyable to speak to him again. 

I should mention that we interviewed him from his flat in Berlin and at times, the audio quality isn’t as good as we would like. So, I hope our listeners will be forgiving as we worked to improve the audio files as much as possible. 

Early Life and Career [0:02:28]:  

Kenny Fries 

[0:02:28] I'm Kenny Fries. I am a writer and curator originally from Brooklyn, New York, though I haven't lived in New York in quite a while. I now live in Berlin, Germany for the past 12 years, something like that, and have spent time also in Japan. A lot of my work was Japan-based for like a decade. And, yeah, that's basically it. I started out with my degrees in theater, and I had my first play done in New York at La MaMa when I was quite young, in my early 20s. And then I've been always writing poetry, and though I haven't written much poetry in the past 15, 20 years, I have a book coming out in June, “Returns: Poems Selected and New,” so I'm at that stage in my career. And I moved to writing nonfiction, and I've had three books of nonfiction published, the last being in 2017, my books take a long time, “In the Province of the Gods,” this is my Japan-related book. And I've been working on a book about Aktion T4, “Stumbling Over History and Disability in the Holocaust” for the past 12 years. 

Chloë Atkins 

[0:03:50] So, I mean, growing up in Brooklyn, what was that like? And how did you know you were going to end up, or did you know you were going to end up sort of in the creative field of being a writer? And how were those choices made? 

Kenny Fries 

[0:04:02] I mean, growing up in Brooklyn, I mean…Yes, that's what my book is about. In a pretty much a lower-middle-class Jewish family, I was one of the first disabled children to be mainstreamed into the New York City school system, and Judy Heumann was a little before me. She was in Queens, and I was in Brooklyn. 

Chloë Atkins 

[0:04:35] Did your family have to fight? I mean, I'm going to read this now. But did your family have to fight in the way that Judy Heumann’s did? 

Kenny Fries 

[0:04:40] I don't know if “fight” is the right word. The strange thing is that when I was in kindergarten, in the first grade, they insisted that my mother sat on hall patrol outside in case something happened to me. It’s always the mother, of course. It was the 1960-something. So I don't know if it was a fight. You'd have to ask them if it was a fight. But I was made, quote-unquote, mainstream from elementary school on. After the first grade, my mother did not sit on hall patrol. Do you remember hall patrol? 

Chloë Atkins 

[0:05:23] Vaguely, yes. Vaguely, I do. 

Kenny Fries 

[0:05:27] It's gone the way of Mimeos and that purple stuff that you could smell. 

Chloë Atkins 

[0:05:32] Yeah, that, they used to smell, yes. Exactly. Well, I was going to ask you something. We did this huge study, which I think we ended up speaking to you, but, I'm not sure we did, where we interviewed people with disabilities across five countries. And one of the things, when people were mainstreamed, some, it was great. Some, it worked really well. And others, they were still pretty isolated within the class. What did you find? 

Kenny Fries 

[0:05:55] Well, I was pretty isolated, but I didn't know what it meant to be isolated. There was another disabled person who was a few years ahead of me in elementary school, and everybody thought I was him. But later in life, when I was in Chicago briefly, I met a disabled person who had not been mainstreamed. And he knew all these disabled people. And it took me a very, it took me a much longer time. It took me until, oh, my last year in college when I was having strange panic attacks and stuff. And my therapist told me that, made a deal with me that a therapist shouldn't do. He told me he'd come see a show I was directing if I went to see Irv Zola, who was one of the first disability studies professors.  

Chloë Atkins 

[0:06:42] Yes, yes, exactly. Yeah.  

Kenny Fries 

[0:06:44] I went to see Irv Zola, and he got me in touch with the Boston Self-Help Center in Boston. This was right, very close to graduation. So that was the first disabled people that I became friends with. It was never enough for me to be friends with a disabled person because they were disabled. I had to have something else in common with them in some way. 

Chloë Atkins 

[0:07:07] Well, that's one of the things. I mean, I'm a member, I'm both disabled and a member of the gay community. And it's interesting, people, I mean, when I don't wake up and see myself as disabled, or... I'm a lesbian, you know, it's not something that I identify immediately as I get up. But I began to realize that other people saw me that way. And that in some sense, I had to sort of grapple with that identity and deal with it. But what you talk about, just to get back to meeting disabled people, is just that there is this tension always between the community of learning from others who have sort of similar experiences as you. I learned a lot from other people who use wheelchairs that I didn't learn from formal physiotherapists and occupational therapists. I learned a lot of tricks from people who were just living it. And that helped so much. And yet, there are other instances, if we look at education, is that the education given to students was very poor. So, you know, it was this balance of trying to walk that tension. I think you still probably do have to walk that tension. 

Kenny Fries 

[0:08:08] I was very lucky. When I moved to California after graduate school, I met Marilyn Golden, you know, who became my disabled mentor in a lot of ways and disability rights. She introduced me to Judy Heumann. She introduced me to Doug Martin, who helped with the laws, passing SSI and laws and plans for self-support. So when I had to rely on Social Security, I had somebody to tell me exactly what to write to get so I can keep some of the money I was making.  

So, and then soon after that, I met my coterie of disabled artists and writers. Ann Finger, Susan Nisbaum, another one that we lost a few years ago. Vicki Lewis, when she did the, she ran Other Voices at the Mark Taper Forum in Los Angeles, the playwriting unit there that was for disabled people. And she did this huge Chautauqua performance in disability in, I always get the date right, it was either 1992 or 1994. And it was that meeting that set me off to edit “Staring Back: The Disability Experience on the Inside Out,” which was the first commercially published multi-genre disabled writer anthology in the US.   

I outed Adrienne Rich as a disabled person and had a friendship and a correspondence with Adrienne Rich for many years. So I was lucky in that way. I kind of met the right people and yeah, it's kind of, that's been my life in a lot of ways. So, but it still happens because when I went to Japan, I had the Japan-US Friendship Commission and NEA grant to go to Japan as a Creative Arts Fellow in 2002 and landed up meeting people there who, in disability studies, people, a lot of whom are not disabled and still in touch with, and they happened to know people in Maryland, got me in touch with the people in Germany and the people in Germany know the people in Japan from the UN, you know, Charter for the Rights of Disabled People.  

I just was in Taiwan for three months and my Japanese colleagues introduced me to their Taiwanese colleagues. I mean, it's just been a life of doing this. I’ve been at this for 40 years. I've kind of just become a, I'm kind of a central part of networking people to meet and who they should meet. So it started then, when I moved to San Francisco.  

Funding and supporting yourself as a disabled artist [0:10:46]  

Chloë Atkins 

[0:10:46] I'm now poking in different ways than when we've talked otherwise, but I'm fascinated because one of the things I struggled with was, well, how do you support yourself, right? How do you weave your way as an artist? And as you said, you had social security. So how did you manage to know at what point, you know, how do you, yeah, just tell me about that. How did you figure out how you were going to support yourself in all of this?  

Kenny Fries 

[0:11:11] Still figuring it out. I mean, I taught for 27 years in the MFA creative writing program at Goddard College, which is now no longer. It closed in 2023. I left at the end of 2021. So that gave me a base income. I've been very, very fortunate in funding in my life. If I told you how much money I've gotten, you'd probably fall off what you're sitting on. And especially over the past 10 years, both from the Canada Council for the Arts, because my husband is Canadian, so I'm a Canadian citizen as well. And I've gotten grants in Berlin as both a writer and as a curator. I just, I got the Disability Futures Fellowship from the Ford and Ellen Foundation. I mean, I just had a lot of good fortune that way. But the trade-off has been I have no retirement. 

Chloë Atkins 

[0:12:15] Yeah. You just have to keep working. 

Government support across Germany, the USA and Canada [0:12:17]:  

Kenny Fries 

[0:12:17] Well, it's getting impossible with my mobility. 

Chloë Atkins 

[0:12:21] I mean, that's the terror. As you get older with a disability, things become more difficult. You can't keep pushing. And yeah, I mean, I'm sort of experiencing similar things, as are friends of mine. 

Kenny Fries 

[0:12:31] I mean, I don't know. I mean, I can teach a one-off, but I don't think I can, I can't teach the class, three-hour class once a week. I did that when I lived in Toronto. And even then, which was, you know, 15 years ago, I would come home and I would, I wasn't using a wheelchair most of the time. And I would come home, and I'd have to call my husband from the garage downstairs to come pick me up. And I just, I couldn't do it anymore. So it's, yeah, it's gotten to the point where I really can't do that. It's gotten to the point where I can't do much on my own because I have this neck and shoulder problem as well. So, I can't wheel myself in the wheelchair. 

Chloë Atkins 

[0:13:10] Yeah. You know what you need is one of those, like, they're expensive, is one of those things that you can snap to your wheelchair, but they're about 10,000 bucks.  

Kenny Fries 

[0:13:17] I have one.  

Chloë Atkins 

[0:13:18] And does it help? 

Kenny Fries 

[0:13:19] We don't want to talk about my experience getting in the wheelchair.  

Chloë Akins 

[0:13:21] Okay. All right. 

Kenny Fries 

[0:13:22] I mean, it's a very interesting story. I mean, they declined the wheelchair that I really needed. And so, because of money. And I landed up, they ended up spending more on this wheelchair I don't feel safe in with the electric attachment, which is really too difficult for me to put on and put off.  

Chloë Atkins 

[0:13:40] Exactly. It's too difficult. Yeah, I get it. 

Kenny Fries 

[0:13:42] I'm terrible at driving things. At Goddard, they provided a scooter for me when I was there. And I ran it into the wall where I was housed in my bedroom. 

 Chloë Atkins 

[0:13:57] Oh god, yeah. No, I get it, I totally get it. I mean, having, I mean one of the things is that, I don’t know, now that you live in Germany it might be different, but as an American, well I’m a Canadian and one of the things I’ve started to feel at this age is I’m grateful that I’m a Canadian because literally battling with insurance companies, I wouldn’t have survived as long. I just wouldn’t have been able to get the same care, you know the approval for each plasma exchange I need would have taken forever.  

Kenny Fries 

[0:14:24] I didn't have that much problems in the U.S. I mean, I have this wheelchair that I'm sitting in since, oh God, 2005. I figured, oh, I was on, I was living on Medicaid at the time. And I figured, oh, now it's time to get one, even though I really didn't need one. And they declined at first. And then when I appealed, it went through. It wasn't a problem. Here: 18 months. 

Chloë Atkins 

[0:14:51] Oh, wow. Interesting. So this was the German government that caused all the issues. 

Kenny Fries 

[0:14:55] Well, the German system is weird. It's government-funded health insurance that you pay into but it's companies that you still have to deal with. And I've been trying to find a therapist, for psychological stuff. I had a heart attack last year and haven’t been the same since. And it's been over a year and I haven't been able to find one because they have a limited amount of people in the system. 

Chloë Atkins 

[0:15:18] Well, because they're trying to make profit on the system, right? These companies, right? 

Kenny Fries 

[0:15:22] No, that's not it. It's just that the government doesn't, they don't license enough people to be part of the government insurance. This is really impossible. And I, you know, I don't have the money to pay out of pocket. I don't even want to pay out of pocket. 

 Chloe Atkins 

[0:15:36] Right, I totally understand. 

Kenny Fries 

[0:15:40] Yeah. So, and now, I mean, it's getting really strange because now I'm on Medicare in the US, even though I'm not there to use it. And I'm paying more for my health insurance now in the US than I did when I had a job that was helping pay for this. So I'm paying over $500 a month for health insurance I don't need.  

Chloë Atkins 

[0:15:59] And why do you, and you have to do that? 

Kenny Fries 

[0:16:00] Because if I didn't, if I didn't do it, when I have, after six months of turning 65, if I didn't do it, I wouldn't be able to get a Medigap policy that pays for the difference, you know, the 20%. And because of pre-existing conditions or age, they can't ask questions when you do it within six months, but they can, they can deny and charge you more later. And eventually, you know, if I have to go back to the US, if something happens to my husband and I can't live here alone in Berlin. So I would have to go back to the States. 

Chloë Atkins 

[0:16:37] It's contingent. Everything is contingent. 

Time, aging and disability [0:16:39]:  

Kenny Fries 

[0:16:39] Everything is contingent. Everything's never ending. And it's been one, one physical after the other. I mean, actually getting around is not the worst. I mean, I have, I had blood clots in my lungs 20 years ago, I'm A3 positive for 20 years. And then I had a heart attack last year, and I lost heart function.  

Chloë Atkins 

[0:17:01] Right. 

Kenny Fries 

[0:17:02] So it's the balance that I have trouble with is, in living is doing things now and putting them off. And that's a, that's always a problem. Because you know, what I don't want is, you know, if I die, die, I can't do it. I won't know. But while I'm alive, if my mobility gets less and less, or I'm unable to do things, then there's that thing of, oh, I should have done this when. So that's why. 

Chloë Atkins 

[0:17:32] Absolutely. Yeah, no, I have that myself. It's like trying to, and I actually have a, I have a child who is a young adult, and they'll delay doing something and I’m like don't, you have no idea whether in six months or two days, you're going to feel well enough to actually do what you're putting off. While you feel well enough, or while you can, do it, because, and in some sense, I think that's the gift of disability. It sounds weird, but it makes you much more aware of time, and the how valuable it is. Now, in part, the other part is that you have to let go of time. There's crip-time, like, for instance, things just take longer, you have to forgive yourself for the days that you can't function. And, you know, when I was a young prof, I remember, you know, I was trying to get tenure. And, you know, I'd be sitting in the bottom of a shower feeling terrible, just absolutely terrible. And I think everybody else is writing right now. I've been down like this for three days, and I've got to teach tomorrow. And yeah, I'm getting nothing done. And everybody else is getting stuff done. But that monkey, I had to get that monkey off my back, right? That's not helpful to think that way. 

Kenny Fries 

[0:18:39] Luckily, I'm not an everyday writer. And since the heart attack, I've kind of not even an every year. 

Atkion T4 program and the culture towards disability in Germany today [0:18:45]:  

Chloë Atkins 

[0:18:45] So let's go back, so let's go to that. So I'm sorry, you've had a heart attack, but you were writing a really what I think is a really important book about Aktion T4, right? Yeah. And can you tell us a bit about that? And what you've done and what you would like to do? 

Kenny Fries 

[0:19:00] I mean, the book, I revised it last year. Last March, we had a wonderful month in Florence, and I was able to revise it for a month. And then I had a heart attack two weeks later. So I've been working on it for 12 years. Excerpts have appeared in the New York Times, in the Believer, I mean, different places. 

Chloë Atkins 

[0:19:20] Yeah, I saw that. Yeah. 

Kenny Fries 

[0:19:21] And I've spoken, that's what they wanted me to talk about when I gave a talk in Taiwan to the Society of Disability Studies there. And so basically, you know, it was about the Nazi program that killed disabled people. 70,000 in the official T4 program, which ended in 1941. And then an additional 230, estimated 230,000 after the official. And it's been very difficult to live in this culture, knowing that history.  

Germany is an extremely staring culture. China is probably the only other place that's as prevalent. And it's, but it has a tinge here of, and I'm very aware of it now, because I was away for four months. And every time I come back, it just seems worse. You know, “what is a wheelchair doing here?” There's this look, there's this, it's just, it's horrible. I mean, as soon as we got out of the, as soon as we got out of the taxi, kids were staring at me here, which I did not experience in Taiwan. Very little. And also in Taiwan, the subway, in Taipei, the subway is really accessible. So I would say 90 to 95% of the time we went on the subway, there was another wheelchair user, sometimes three or four, which here, which is kind of accessible, but the elevators are always broken. They, they're very, very rare to see other disabled people. Japan is a whole other story.  

But coming back, the culture is just really difficult to manage. One of the examples I used to give was, you know, if you go in and there's an accessible entrance to the museum, but I can still walk. Mike can take the chair upstairs. And instead of going around to the back of the building and through the, I sometimes will just go, you know, up the stairs. And that, you know, now it's difficult, but, you know, and almost all the time I did that, somebody would come over to me and make sure I knew there was an accessible entrance. But the subtext was, we did this and you should use it. There's a way to do things. And it's just, it's just a horrible thing to do. I'm also Jewish. 

Chloë Atkins 

[0:22:04] And gay, right? I mean, all of it. 

Kenny Fries 

[0:22:06] Yes. Well, that's, in Berlin, that's okay. 

Chloë Atkins 

[0:22:09] I know, but there's a history nonetheless. 

Kenny Fries 

[0:22:11] Yes. Yes. There's a history of that too, which is tied to disability in a lot of ways because of... I curated this big exhibit, “Queering the Crip, Cripping the Queer.” And that was the dark part of the exhibit was the Nazi time, what happened to disabled and queer people. And there was a special little vitrine about this disabled queer person who was killed. And it was weird because he was in prison because, he was arrested on paragraph 175, the queer, you know, the anti-gay thing. And he, but he was killed because, and it was very rare that somebody under paragraph 175 was killed. And that's because he was both disabled and gay, which was our, you know, our analysis. And I've written about that, an article about that as well. [Inaudible] 

And so, yeah, it's a difficult place to be. I've been trying to find an equivalent, like of people living with the history of such, oh, the oppression is not... I can never find words for it. Murder. . 

Chloë Atkins 

[0:23:27] Right. Well, Rwanda, you know, there are places, there's Pol Pot. Like we, we tend to, I think there's a, if you've white skin, we remember it better. But I think there are a lot of places where there's histories of this, which runs deep. 

Kenny Fries 

[0:23:39] Yes. But the difference is that it was, it wasn't because you were a certain, in like Pol Pot, it was you were Cambodian, it didn't matter. Maybe if you were an intellectual or something. 

Chloë Atkins 

[0:23:50] If you were an intellectual you were killed. 

Kenny Fries 

[0:23:51] It wasn't a, it wasn't a group like, you know, like disability or an ethnic group or a minority. 

Chloë Atkins 

[0:23:58] Well, Tutsis in Rwanda were, right. They were an ethnic group. 

Kenny Fries 

[0:24:01] Yes, yes. So, but living with that history on a daily basis, pretty much. 

Chloë Atkins 

[0:24:07] So I've, I've heard, you know, that some people say, well, you know, people with... It horrified me that someone said this to me and continued to actually advance this theory that there, there are fewer disabled people in Germany, just because the Nazis eviscerated them during the thirties. And therefore, they got rid of all the genetic abnormalities. And I just, I wanted to... 

Kenny Fries 

[0:24:30] It's not true.  

Chloë Atkins 

[0:24:31] Yeah, I said this is patently not true. But he kept on pushing this as a theory. So what do people with disabilities who are German do if everyone's staring and there's limited to their, are they confined to their families and their private spheres? 

Kenny Fries 

[0:24:44] No, I mean, there's a, there's a very strong disability rights movement here. You know, that started in the, in the 1980s. And I mean, it's a very strange time because the two big centers of disability studies are no longer here. There was, Anna Walsh was the only professor of disability studies at a university. There are at Hochschule's, it's a whole different system than we have in North America. And it's kind of like technical schools. And also the disability studies center in Hamburg was cut in the last year or so. There are people, I mean, I know them. I know the, I know the big wigs from the past. I know the, you know, people in the present. But I don't know, I have to ask them. I mean, they don't seem to mind. I mean, I didn't mind as much when I was younger. I, which is weird. You think by, as you get older, you'd be used to it and just let it roll off. It's gotten worse for me.  

But my friend, Rebecca Maskos, who's now a professor who teaches it at the Hochschule, the Alice Salomon University, Hochschule right outside Berlin. And she and I were together in our wheelchairs and there were kids basically surrounding us and circling us. You know, there's stories, you know, people making, you know, wanting to steal her cane when she's walking. I mean, it's just really, it's just, I don't know. And I just, I got to the point in my life where I just don't want to deal with it anymore. And so sometimes, I won't go out, you know, and sometimes I just don't want to be in public. You know, it's just something that I just don't want to deal with. 

Chloë Atkins 

[0:26:42] Do you think it's, I mean, I sort of feel as you age with a disability, you become evidently more frail at some level. Psychologically, yeah, you get tired, you get less... I had more energy to just sort of, I remember, you know, people, I used to wear a baseball cap when I was in a wheelchair always. And I actually like to do it now if I'm using a chair, because it stopped me seeing people doing this and staring, like, you know. I didn't see that constant movement, right? 

Kenny Fries 

[0:27:12] I had an experience in Japan. So we were on a bus, I was in my wheelchair, and there was a little kid with his mother, and they had to move from where the wheel, the bus is there, you have to, you have to move because the seat has to go up, whatever. And he kept looking at the sign that the seat was for disabled people, and he didn't understand. And his mother explained it to him. You would never see that happen in Germany. Never. Parents just don't care. They don't tell their kids. They don't, you know, it's, that was a really touchstone experience in Japan. Because it's, it's, I mean, Japan has its own issues with disability. 

 Chloë Atkins 

[0:28:04] Right. 

 Kenny Fries 

[0:28:04] Starring is not one of them. Because there's a difference between public and private life there. I mean, I've written all about this in my last book. So, you know, when I first got to Japan, I realized people were staring at me, but it's because I was a foreigner. It had nothing to do with being disabled. Right, right. And that made sense, because I was a foreigner. 

Chloë Atkins 

[0:28:26] Well, they've been such a tight, tight society for centuries, right? At a level. And so foreigners… 

Kenny Fries 

[0:28:34] Yeah, yeah. And so I never had to really deal with that issue. There was other things. I also wasn’t Japanese, I had to deal with, you know, I always get asked when I gave talks in Japan, from the audience, “what is it like to be disabled in Japan?” And I have to say, “I can only tell you what it's like to be a foreigner with my specific disability.” But I did not use a wheelchair when I was in Japan. Going back in my wheelchair after 20 years is very interesting. 

Chloë Atkins 

[0:29:03] What’s it, what's... Tell, tell me. 

Kenny Fries 

[0:29:04] I wrote a lot about Japanese gardens. And I realized when I, when I went back to film with Alison O'Daniel, the deaf and hard of hearing filmmaker, to do a film in 2023, sponsored by the Canada Council for the Arts, we realized that, oh my god, if I was in a wheelchair, I wouldn’t have written about these places because I couldn't get there. They weren't accessible. Now there is something to write about that. I don't, I haven't done it yet, maybe I will.  

But it, it was a very different experience. And also because of the Olympics during COVID, which they didn't, you know, nobody came to because of COVID, they, they, especially in Tokyo, the interest for the disability improved immensely, immensely. You go to the two major shrines, the Shinto shrine or the Buddhist shrine, and it's, you know, when I went with Anne Finger, she couldn't get up to the shrine. Now there's a ramp. And that's what, that's what, the, this is what they built this building, it looks like the temple on the side, and there's an elevator. And what's interesting is they built another one on the other side with no elevator. So it had the symmetry of the architecture. For anyone who says it ruins architecture is wrong. 

Chloë Atkins 

[0:30:21] Right. They figured it out. Yeah. 

Kenny Fries 

[0:30:23] So, but it feels here that they're doing a favour for you. You know, we've done, we're doing this as a favour. The remember us culture in Germany is very strong. It's about them, it's not about the people that were killed. Everyone says, oh, but they've taken on this, the Holocaust, and they have these big things. It's all about them. There's nothing to, and their pride in remembering, there's nothing to do with it. It’s still an extremely anti-Semitic place, extremely, extremely ableist. I mean, it's just, it's not good. I go away and there's elevators, elevators working, working, working, come back and there's no elevator going. 

 Chloë Atkins 

[0:31:05] Well, it’s interesting, a friend of mine lived in Germany for a number of years, married to a German, doesn't live there anymore, but said as a, she's not disabled, she's of colour, but she said that as a mother, Germany was terrible in terms of supporting young mothers. Like just at the time when she was raising her kids, she found that childcare was almost non-existent for her. This was now probably 20 years ago, but at the time was really inhospitable compared to other places that she had lived. And she just felt very unsupported. So that's kind of interesting that, because we have a view, at least I do, of Germany of being very sort of socially minded and that these things... 

 Kenny Fries 

[0:31:45] Well, there is, I mean, I don't know why she experienced that, because I mean, the things that I know there's a tremendous amount of support for people with kids. 

 Chloë Atkins 

[0:31:52] Right. 

 Kenny Fries 

[0:31:53] And, I mean, for example, somebody I know, a disability studies professor who's not disabled, it was easier for her to, in the maternity leave system here, I mean, you get all this time. You can split it, you know, if you're a couple, you can split it. I mean, it's really like, I think, 18 months or something. Paid. I mean, I don't know what happens in Canada, in the States. 

 Chloë Atkins 

[0:32:19] In Canada, you get a year and you can split it, right? You can split it between the two of you. Let's get back to disability. So one of the things, so why are you, how did you end up in Berlin, if it's such an inhospitable environment? 

 Kenny Fries 

[0:32:30] How did I end up in Berlin? Very good question! So in 2010, when I turned 50, I did a lot of traveling. I had my creative capital grant, and I did a lot of traveling with people to different places and came to Berlin with my husband. And we really thought it was interesting and said, okay, let's, let me figure out a way how we can get some money to live here. I came up with a project and got funded by the DAD, the German Academic Exchange, and basically came to research disabled people who grew up in what was East Germany. Because I figured, interesting, having the same culture, but a different political system, what would be the difference? Very soon after I got here, I realized I couldn't understand about anything about disability here, unless I went back to the Nazis, and even before that. So the whole project changed. We really liked it here a lot. So we were in Canada, which I didn't like, and we don't have to go into that. Those were the wasted years of my life. I was in Canada for seven and a half years, and I got not one invitation to talk at a university or anything. 

 Chloë Atkins 

[0:33:42] Well, it's interesting. I find the academy in Canada pretty hostile to disability. I mean, not necessarily, but it's interesting. It's not on the surface, but in fact. 

 Kenny Fries 

[0:33:55] And we won't discuss the laws. I mean, the Ontario Disability Rights Law, when I was there wasn't going to take effect for 20 years. 

 Chloë Atkins 

[0:34:01] And to be honest, it's in effect, and has it really changed anything? 

 Kenny Fries 

[0:34:04] It's changed nothing. And now we have MAID, you know, we can talk about that. 

 Chloë Atkins 

[0:34:07] We can talk about MAID, yes. 

Disability in times of crisis [0:34:09]:  

Kenny Fries 

[0:34:09] Yeah. So I got to, so I basically, we packed up from Canada and came here. And at first, it was fine. And I decided, okay, I needed to go to all the six T4 killing sites and did that. And, you know, had a German agent for a while and, you know, just really liked it here. And that was, I mean, we first came on the grant in 2013, and we moved here, you know, in 2014. And so, yeah, that's how we got here. 

 Chloë Atkins 

[0:34:41] For somebody listening to this, can you just tell them the progression of what happened in the thirties? And you were saying something that you found history prior to Atkion. I mean, eugenics was, comes out of the 19th century, but just can you give a little bit of an example? 

 Kenny Fries 

[0:34:58] To give you an example: in 1923, there was a survey, Dr. Iwad Meltzer did a survey. He was not a eugenicist. He surveyed his patients who have, disabled kids who had non-disabled parents, he surveyed the parents and asked them how they would feel if their children were killed.  

 Chloë Atkins 

[0:35:22] Wow. 

 Kenny Fries 

[0:35:24] And he was shocked at the result, because he was not a eugenicist. 73% of the parents said they wouldn't mind their kids being killed if they didn't know about it. It was pre, this is before the Nazis. this is 1923. In 19-, I'm going to get the dates wrong, because it's the end of the day here. 1920, was it? The, the, oh God, what was the exact name of the book? “The Hoffman Binding Pamphlet” book, whatever you want to call it. The name of, the title is just not the most famous thing. I could look it up. They wrote a treatise on basically why it would be legal to kill disabled people. One was a judge, one was a psychologist or psychiatrist. I can’t remember. So it's been there for a while. But you know, through, the two things that I've looked at that hold my book together perspective-wise is being a vicarious witness. I ask, “why am I doing this? Why am I going to these places? What good does it do?” And the other thing is multidirectional memory, which I, which is a whole scholarly thing. But the way I look at it is looking at an event in many dimensions across time. So it's not to compare what happened at one time with another, or our oppression instead of yours, that sort of thing. But it's to understand the larger continuum that it's on.  

 So in the book, I do talk about going forward. I go forward to the HIV/AIDS, where the pandemic, you know, when it first happened, nobody protested. The same thing in Germany. Parents did try to get their kids, some parents did try to get their kids out of the institutions that led to where they, were in 1942 to being killed. But there was no mass protest for anything like that. And there was no mass protest around HIV/AIDS until the people with AIDS themselves decided to take it into their own hands. But with COVID, most of the deaths were in nursing homes and institutions and nobody, there was no momentum… 

 Chloë Atkins 

[0:37:44] Well there’s, yeah no, it's... But even now, don't you feel around COVID, just as a side branch, is that you realize that in terms of pandemics or anything in human history, it's survivor's history we are hearing. So those who die, and those who die along the way, their stories just disappear. And so, the sense is... I've always, I continue to feel is this sense of trauma that happened around COVID. But I was like, “yeah, phew, it's over” without a reflection for those who are still threatened by it. And at some level, I feel as though people look at me, well, your life is expendable. Like, you know, those people died, and you don't have to worry about them. 

 Kenny Fries 

[0:38:25] Exactly. Exactly. Whereas, you know, when you're dealing with HIV and AIDS in the US, you know, when, when five or I don't know how many people, a handful of people died of Legionnaires disease and it was front page news. 

 Chloë Atkins 

[0:38:37] Exactly. 

 Kenny Fries 

[0:38:38] But then I also went back. So in 1898, there was, there was what's called the colonial exhibit here in Berlin in Treptow. And they were called, quote, unquote, and I'll just use the term human zoo. They basically took their colonial subjects under German jurisdiction, and brought them from Africa here. 

 Chloë Atkins 

[0:38:58] The Belgians did this. Yeah.  

 Kenny Fries 

[0:39:01] But what's interesting is I went to this exhibit, and a lot of the medical procedures, experimenting, measuring all this eugenics, was happening way back then, in 1898. So there was a similarity to what was going to happen to disabled people decades later. There's this underlying thing that is still not getting rid of, you know. Some friends and I were supposed to bring their show, Life, Unworthy of Life, to Chicago during the pandemic, we couldn't. So we landed up having to do a video version, we changed the whole thing. And we talked to a bunch of, 11 disabled activists, scholars, disabled people in Chicago and put together this thing. It's on my YouTube channel. And what came up through this was what we first called the shadow of eugenics, that popped up again during COVID. And but then I decided it was the shadow of the guillotine of eugenics. It came right back. It never went away. 

 Chloë Atkins 

[0:40:10] No, it's always there. It's always there. Like I was, remember, Hurricane, the one that destroyed... Katrina, that destroyed New Orleans. I was a young professor in Washington, DC at a conference, political science, and people were watching it on the, you know, on the TV screens in this big hotel and the big conference center. And I was just horrified, knowing as they were announcing that there were these nursing homes and retirement homes and people with disabilities basically being left behind. And, you know, that didn't, you know, the electricity, there was no plan. And at some level, I just, I felt the sense of just vulnerability and outrage simultaneously as I watched this. And I found that my fellow academics and political scientists, they had outrage, but not at the same level. They didn't feel the deep threat that I felt when I watched Katrina in the US of how quickly those who, I don't know, certain people didn't matter. Right? It just didn't, it didn't matter. Right? 

 Kenny Fries 

[0:41:18] I mean during COVID, it was horrible. Because my book has taken so long with work to write, the frame has changed, you know? And COVID really changed the frame. Because during COVID, I mean my friends in the UK would go to the emergency room with their CVs attached to them. Because if you used a wheelchair, they were saying “oh we can’t help you, we don’t have enough ventilators” of whatever it was.  

 Chloë Atkins 

[0:41:50] Right, right, right, right.  

 Kenny Fries 

[0:41:51] I mean, you know, yeah. I mean, it’s just endless. I don’t know, maybe it doesn’t matter that I’m living in Germany, it’s just everywhere.  

 Chloë Atkins 

[0:42:00] Well, I actually think it's somewhat, I wonder whether it's instinctive. It's sort of like, xenophobia, I suspect is instinctive in the sense that, you know, 10,000 years ago, distrust of somebody who came from elsewhere was, you know, there was a caution and a threat, right? And I suspect that just the way animals mask their injuries, that there's a threat to being the weakest, that there's this thing. But we're, we're a society that's moved beyond that. 

 Kenny Fries 

[0:42:25] It’s a reminder that we're mortal. I mean, that's, I mean, the experience I once had with Susan Nussbaum, when we were doing some touring for Staring Back back in 1997, 98, whatever it was. We were in Minnesota, University of Minnesota, and we were in the motel, at the hotel in the morning. And she was sitting in a wheelchair having breakfast. And somebody just came over to her. So just think what just happened: someone had to get up from their seat, cross over and go to her. And basically said, “I'm so glad you're here.” And Susan looked at her like, and Susan is one of the, maybe the funniest person on the face there looked at the woman and said, “why?” “Because I'm so glad I'm not you.”  

 Chloë Atkins 

[0:43:20] Wow.  

 Kenny Fries 

[0:43:22] But just think about it. This person had to get up. And that's what it's about. It's about that you're a walking thing of, of change and mortality, that things do not stay the same. There's nothing like security. And that's what people want in their lives. And so that's where, you know, I talk about this in the introduction to Staring Back, you know, 25 years ago, or now, almost 30 years ago, I just, you know, it's weird, we’re a marker of mortality. And people don't want to know about that. I mean, the whole thing is, if you have a chronic illness or something that doesn't go away...  

 Chloë Atkins 

[0:44:00] I know, this is what I have, right? I have something that never goes away. 

 Kenny Fries 

[0:44:10] People disappear, because you're supposed to get better. 

 Chloë Atkins 

[0:44:14] Well, I'm, I'm incredibly grateful for the people who stay. That's what in the end, I'm just profoundly grateful for the people who stay and the dignity and courage that they have. I mean, people always say, “oh, you're so brave.” And the point is, actually, no, the people around me are the ones who, you know, my spouse, who stays with me, who, you know, experienced approbation, because not only were we gay, but I was in a wheelchair. Like that was, you know, that did damage to her career. That was not a good thing for her. That takes courage to stay with someone day after day, a constant sort of, of that reminder.  

 But I'm going to bring Lark in here, because she's the one person who's not been in a wheelchair. So I'm fascinated, Lark, but here we are, sort of like slashing and burning people. I'm intrigued about your experience in school. Yours is, I know you've had a weird experience, Lark's had a very interesting life as well. But about your experience as a young person in Canada around disability and what exposure you had to it. 

 Cultural differences and disabled identity [0:45:15]:  

Lark Huska 

[0:45:15] Yeah, that's a great question. I think, as you're talking, Kenny, and you're talking about Germany being a culture of staring, I'm really reflecting about how North America is a culture of, like, not looking and how it's rude to look. And so perhaps in Europe, in Germany, in particular, you have a hyper visible experience, where North America is more so an invisible one. And so I think the story you're telling of the Japanese woman or the Japanese child, not knowing what the specific disability seating was, and the mother being like, oh, like, publicly saying, like, this is what it's for. I think you similarly might not have that experience in Canada, but because it would be rude to ask, it would be rude to look. Like, you should just assume it's none of your business. Don't get yourself involved in this thing that is not your business, but also, like, you probably shouldn't ask about because, like, let's not open that can of worms is kind of the idea.  

 And I think Chloë also always speaks about, you know, when we're talking, because we both have a political science background, and when people talk about disability or, like, in Canada, Indigeneity as well, those being kind of the odd cases, the things that, like, yeah, they're kind of, like, they apply when you're talking about theory or law in Canada or North America. But yeah, they're the odd cases. That's not kind of, like, who we're targeting, like, invisibility again. So yeah, I think it's interesting to compare and contrast. And I'd be interested to hear, as a North American, your experiences of both. You're obviously saying the hypervisibility is very unpleasant, but I would like to hear your experience of invisibility as well.  

 But also, just to circle back to the beginning part of our conversation, and also throughout, you've mentioned some very amazing names throughout this whole conversation. And I'm interested as well to hear, you know, whether hypervisible or invisible, what your community has looked like throughout your life, and what supports have looked like, and what kind of has led you to experience or share your experience of your disability through writing in particular, and why you kind of chose that as your outlet. 

 Kenny Fries 

[0:47:27] It's interesting, it's not all Europe, it's mostly Germany. It's really Germany that staring is so prevalent. Yes. And when I go back to North America, I'm much more invisible, and I'm much more at ease in that way. Maybe because I was used to that growing up, because I was living there. But I'd much rather that, I don't have to deal with everything. Though I'm under no illusion of what people think or deal with that sort of thing. I mean, there's, you know, there are advantages in both Germany, same thing in Canada, actually, you get a disability tax credit, you get around $1,500 off your income, [inaudible], in the States, unheard of.  

I don't know what led me to writing. I mean, the interesting thing is, I'm obviously the same as I've always been, my work is pretty much the same. But when I was younger, my work was looked at, I was looked at as a gay writer. And as I've gotten older, I've been looked at more as a disabled writer. Why? I don't know. I guess it's because the culture has become a little bit more... There's now something called disability arts and disability culture, where there wasn't when I first started out.  

But it's rare, it's rare that... I'm usually the only disabled person in a queer room or the only queer person in a disabled room. And I've written some articles about this, especially around my exhibit. Because our team was basically, I was the only queer and disabled person on the team. The other people were either queer or disabled. Which kind of gave me some power. Which was nice. I held the whole thing and the whole thing was my idea. I used to be very ambivalent about writing about disability and writing about this stuff. But over time, that just disappeared. You know. That's what I do. And people used to complain about being a token. I'd be glad to be a token. It's going to give me money or whatever. 

 Chloë Atkins 

[0:49:56] I agree. I'm happy to be a token. I'll do really well with all the tokens. 

 Kenny Fries 

[0:50:03] Yeah. And I've been a history of firsts. I was one of the first to be mainstreamed in Brooklyn public schools. I was the first person to write an intersexual memoir commercially about being gay, disabled, and Jewish. I edited the first commercial anthology about disability. I was the first person, one of the first people that got the Gregory Kavka Award for AIDS writing in 1991 for “The Healing Notebook.” It was from a witness perspective. “In The Province of the Gods,” I had converted before I went to Japan the second time. And I wrote about it from being HIV positive from an older perspective, one of the first. I did the first international exhibit on being queer and disabled. It's this constant thing of being a first. I think I'm the only person who has a grant in Berlin for non-writers who write in non-German languages. I think I'm the only one who's disabled who's gotten a grant. I'm probably the only disabled queer writer who got their research grant here. I mean, it's just always number one.  

 Chloë Atkins 

[0:51:10] How do the Germans feel about you writing about Aktion T4? 

 Kenny Fries 

[0:51:15] I don't know. You have to ask them. There's been a German editor who's been really interested in my book, but I haven't wanted to re-enter the publishing world in a while, so I kind of haven't really done that. But I don't know. We'll see when the book comes out. 

 Chloë Atkins 

[0:51:44] And when will it come out? What's it going to be called? 

 Kenny Fries 

[0:51:47] I don't know if we’ll be around when it comes out. It's called “Stumbling Over History, Disability in the Holocaust.” I had a very hard time figuring out the narrative, the personal narrative. And what I always get, every book almost I write, is it should be memoir or history. It can't be both. So that's what I do. 

 Chloë Atkins 

[0:52:05] I do similar things. They cross over. 

 Kenny Fries 

[0:52:07] I can't tell you how many, with my Darwin book. It was like, oh, can you get rid of the memoir? Can you get rid of Darwin? It's just constant. And publishers always look for a reason not to publish something. And I'm in no position right now to want to re-enter that publishing world. It's always ended in heartbreak for all of my glamorous awards and stuff. It always has ended in heartbreak. 

 Chloë Atkins 

[0:52:35] Yeah. Dealing with publishers, my experience has been not so great. 

 Kenny Fries 

[0:52:40] And even my little, you know, my little collected poem, you know, selected and new poems, 140 pages of poems, I just am very weary. I just don't want to go out there. We are having an event in DC. They're flying me and Mike in and the other person they're publishing this year from Finland and blah, blah, blah. But it's in DC in July. And I just, I'm tired. It's time for me to pass the torch. So I always tell my friend Beryl this. 

 For the next generations [0:53:12]:  

 Chloë Atkins 

[0:53:12] I've taken up a lot of your time. So actually, that was going to be one of my questions. So passing the torch, what would your advice be to a young person with disabilities? I mean, I know it's hard, but just. 

 Kenny Fries 

[0:53:25] I'll tell you, I'll tell you what happened. So when I gave this talk in Taiwan, the response was incredible. Usually I give these talks, especially about T4 and I could be like, I've had it for a week. People came from all over the island. And somebody gave me this, the feedback from the audience was that it was very meaningful to them, you know. And at the end, this young, 17, came over to me and she was literally shaking and she couldn't look up. I don't know whether she had social anxiety or whether she was just afraid of talking to this American writer who was supposedly well-known. I don't know what it was. But without looking at me, she looked and said, she said, “how can I do what you do?”  

 If I was in my usual mood, I would have said “don't”. But I was in a good mood. And so I said to her, pretty much what I said to this other woman who was working in a school and didn't like the way the disabled students were being treated, because she didn't know what to do. And I basically told her to talk to my Taiwanese colleagues. They know how to deal with that better than I would. But I told her that what she should do is get into a position of power where she can make the decisions and do what she thought was the way to do things. And she told the organizers that this changed her life. But this young girl, so I didn't know what to do. I didn't know what to say. So I basically said, do what's in your heart and don't do what everyone says you should do. And she said, like my parents? I said, like your parents. So funny, I found out later she was brought by an aunt who was an academic.  

And so, I mean, that's what I tell people. You know, part of me says don't. And a part of me says just follow what you really want to do with it. You have one life. And you can get up one day and, you know, find out that you didn't do what you wanted to do or whatever. It's one thing when I look back, I have very few regrets.  

 Conclusion [0:55:54]:  

 Chloe Atkins:  

[0:55:55] I learned about Kenny many years ago when he was briefly in Calgary and I was a professor at the University of Calgary. His husband is Canadian and I hadn’t realized that so much of his work has received considerable support from the Canada Council for the Arts.  What is interesting about him is that he has lived in so many different countries during his career and thus has experienced ‘ableism’ in many different contexts.   

Lark Huska:   

[0:56:18] Yeah, for someone with a mobility impairment, he travels quite extensively. He seems to be an elder statesman of disability advocacy and writing.  He’s met and worked with so many luminaries of the disability community; people like Irving Zola and Judy Heumann.  It was a real pleasure to speak with him and hear about his life trajectory. 

This episode of Broadcastability was hosted by Chloe Atkins, a professor at the University of Toronto and an anti-ableist researcher, and Lark Huska, an undergraduate researcher at the University of Toronto and communications officer for the Proud Project. This episode was also edited by Lark Huska. Isabel Abukumovic-Poynton created the artwork, and Justin Laurie composed the music. 

Broadcastability can be found on Apple Music and Spotify and at broadcastability.ca. Broadcastability is a PROUD Project production, based in Toronto, Canada. Visit theproudproject.ca to learn more.