Disability and Eugenic Discourses - Kenny Fries

In this episode, Fulbright Germany alumnus Kenny Fries and EUR Diversity Coordinator Susanne Hamscha talk about disability and eugenic discourses during the Third Reich, when disabled people were systematically murdered in the campaign "Aktion T4." But eugenic discourses are alive and well, as Kenny explains with reference to the COVID-19 pandemic. Kenny Fries is an acclaimed writer and received a U.S. Fulbright Scholar Grant in 2017 for his creative nonfiction work on disability in Germany.

Transcript

Susanne Hamscha  0:05 
Nothing about us without us. This was the slogan of disability rights activism in the 1990s and a significant expression of self empowerment. Rather than be talked about and spoken for, disabled people took the space to talk about and speak for themselves. the disability rights movement in the US culminated in the passing of the Americans with Disabilities Act in 1990, which was nothing less than a watershed moment for the disabled community.

Welcome to this episode of Fulbright Forward - A Diversity Podcast. I am Susanne Hamscha, and I'm the Diversity Coordinator for Fulbright in Europe and Eurasia.

2020 marks a significant year from the perspective of the disabled community. We celebrate the 30th anniversary of the Americans with Disabilities Act, in short ADA, a civil rights law that prohibits discrimination based on disability and requires employers to provide reasonable accommodations. We also witnessed the resurgence of disability activism in the context of the US presidential election, with activists rallying around the hashtag #CripTheVote on social media. But we also commemorated what were perhaps the darkest times for disabled people. Exactly eighty years ago, the first so called "test killing" of Aktion T4 happened in Brandenburg, Germany. Aktion T4 was the systematic mass murder of disabled people during the Third Reich. No documents from this "test killing" have been preserved, and there are no survivors of Aktion T4.

There is someone, however, who tries to bridge the silence and make sure we never forget the victims of T4. And that is Kenny Fries, who is my guest today. Kenny is an acclaimed writer and scholar, and a two-time Fulbright awardee. I warmly recommend Kenny's memoir Body, Remember, and for those who are in disability studies, the multigenre literature anthology Staring Back, the Disability Experience from Inside Out. Kenny received Fulbright grants to Japan and Germany, and he currently resides in Berlin.

Hi, Kenny, it's good to have you here. Thank you so much for joining me today. Would you like to tell our listeners about yourself and about your work to get us started?

Kenny Fries  2:08 
Well, thanks for doing this with me, Susanne. Well, for around 25 years or so, or close to 30 years now, I've been writing about disability and teaching about disability, both in the United States and abroad. And as you mentioned, I edited the first commercially published disability anthology of disability literature in the United States, Staring Back. So that was a while ago, that was 1997 or 96. I forget.

Susanne Hamscha  2:46 
I'm pretty sure it was in 1997. But let's talk about T4 because that's what you've been working on most recently. T4 was the Third Reich's "euthanasia program," as I mentioned in the intro. T4 standing, of course, for Tiergartenstrasse 4, that's the address in Berlin where the central office for this program was located. And we know that approximately 70,000 people were murdered in Aktion T4 and around 230,000 people were murdered after the program's official end. We have no T4 survivors who could tell their own stories. So there's this big void, if you will, which speaks volumes in itself, I think. You're currently working on a book project on disability and the Holocaust. You're trying to recover those voices, those stories that are lost. And I was wondering if you could tell us more about the genesis of this work? What brought you to T4 or what brought T4 to you?

Kenny Fries  3:39 
Well, it's kind of an interesting story. In 2013, I received a grant from the DAAD to come to Germany to research lives of disabled people that grew up in what was East Germany. And I did that research. And through that research, I kept literally what I call stumbling over history, which is the name of the book that I'm writing. No matter where I looked, it just it became clear, I couldn't understand anything about disability in Germany until I left I went back further to the Third Reich and what happened, and then I learned that I had to go back even farther. So it was kind of an accident that I basically stumbled on to the subject.

I mean, I kind of knew that disabled people were killed in Germany, but I didn't know the extent, I didn't know the particulars. So that's where it started. And so I decided what I would do, I met with Andreas Hechler, through a disabled friend of mine, and his great grandmother was killed in Hadamar. And through my meetings and interviews with him, I decided that I needed to go visit the six T4 killing sites, which are now Memorial sites. And that's how I set on this journey. So it's been around seven years now.

Susanne Hamscha  5:03 
Well, thank you so much for this story, which shows once again that your research projects really find you and not the other way around. And I'd be curious to learn more about your book project and the films that you produce that go along with it. If you don't mind, sharing more details.

Kenny Fries  5:20 
Yeah, I took excerpts from Stumbling Over History, short excerpts, and I made six videos together with historical and personal photos. The project is called What Happened Here in the Summer of 1940? It actually happened because the Canada Council for the Arts, - although I'm from the US, I'm also a Canadian citizen - and they were funding digital projects because of the pandemic, the coronavirus pandemic. So I said, Oh, what an interesting idea, I could do this. And so I did this. And so there's six videos that are now under the title, What Happened Here in the Summer of 1940?

And, yeah, it's all a part of this whole idea that Susanne Knittel talks about, in her book, The Historical Uncanny, about being a vicarious witness. Because we don't have T4 survivors, like we have Holocaust survivors, most of what we go on are either medical records, or what perpetrators said. So becoming a vicarious witness, not appropriating the stories of people that were killed, but finding a way through remembrance and action to bring the story and the history, the important history, to light.

Susanne Hamscha  6:47 
Thank you so much. What a great project! I'm very intrigued by the concept of the vicarious witness as a way of remembering or recovering the past. Could you explain what it means to be a vicarious witness in more detail? And I'm particularly interested in how you position yourself vis á vis your object of research.

Kenny Fries  7:09 
Yeah, I mean, it basically is because, again, because there are no survivors, you don't want to appropriate the story, you don't want to become the people that were killed, you want to, by other means, bring the stories to light. So basically, you know, I asked myself, why am I doing this? Why? Why go to the sites? You know, I could get all the information that I need online, through books, research, talking to people... Why go to the actual sites? And what happens when you're at the sites is, you pick up various things that somebody else might not pick up, you know. If you went, you might see completely different things than I saw. And these are ways of bringing this, bringing what happened to more of an active state than they normally would be.

I mean, connected to that is the idea of multi-directional memory, which is something I'm still grappling with and trying to understand. But my understanding of it is that in order to capture what happened in a situation like this, you need to go both backwards and forwards from the event, where comparisons can be made to other events to, you know, not to equate them with other events - it's a very tricky kind of thing. So between multi-directional memory and the idea of being a vicarious witness, the hope is that one brings this part of history to light. Now it can be done in other ways. There's history, there's journalism, etc, and so forth. But I call my book history in the form of memoir, because it's all filtered through my discovery of what I find. So the the reader, or in the case of the videos, the listener is experiencing the discovery as I am. So it's more of an active process.

Susanne Hamscha  9:08 
You know, I find your work on T4 so extremely important, because not too many people are familiar with this program and with what happened to disabled people during the Third Reich. Like you said earlier, I, too, was aware that disabled people were killed, but I only became aware of the full extent of it when I started to get into disability studies. And I'm not sure if you're the right person to ask this question, but do you know if there has ever been a reconciliation process in Germany? Has there ever been a disability rights movement or have there been other forms of disability activism that pushed for such a process and tried to shed light on this part of our history?

Kenny Fries  9:50 
Well, yeah, there was a very active, there is a very active disability rights movement in Germany. It started in the late 1970s. And then through 1980, when the Frankfurt judgment happened, which was a law case that...Basically people went on vacation and they encountered disabled people, and then they wanted their money back from the tour operators, or the people that, you know, that booked the tour for them, and the judge said yes. And so that was a big moment. And then 1981 was the United Nations year of the disabled, and that prompted a lot of things in Germany.

So there was a very big Disability Rights rights movement. There were crippled people's groups and crippled women's groups. And then the CIL, the independent living movement. So it was very, very, very active - still is very, very active. And then tied to that was the growing disability studies movement.

There was also movement - disabled people and their families were people that did not get reparations, they were denied reparations. But the surviving families did band together to make the memorials happen in the various places, each one has its own story. But as I mentioned earlier, Andres Hechler, Andy, who's a friend of mine, his greatgrandmother was killed. And his grandmother was very instrumental in bringing what happened at Hadamar, which is more in Hesse, near Frankfurt, to the public knowledge. And then it took until 2014, till the National Monument outside of the Philharmonie, which is whereTiergartenstrasse 4 was, which, as you mentioned, that's where the name Aktion T4 comes from, opened in 2014, which is probably one of the last memorials to a group that was victimized by the Third Reich. Took that long.

Susanne Hamscha  11:57 
And I understand this is also a tricky question, but how would you assess the state of disability rights in Germany in 2020? Where are we right now?

Kenny Fries  12:08 
I don't know, it's better, I think you'd be better off to ask somebody who's part of the German disability rights movement. I don't like speaking for, you know, first, especially - even though I know, people, I'm friends with them, I'm still an outsider.

I would say that one of the big issues for the disability rights movement here since I've been here has been inclusion in education. That's been a very big thing. I think now with the pandemic, you know, in Germany and elsewhere, because of the triage protocols which discriminate against people with disabilities, you know, basically rationing care and, you know, in a triage situation, when choices have to be made, disabled people will not get the treatment, because they're not deemed that they will be likely to survive. I mean, all the eugenic undertones are still there, not only in Germany, but all over all over the world. And that has become very apparent over the past nine months or whatever it's been since the pandemic began. So there's a very important and active group that, you know, that definitely has their pulse on what's happening. But I don't want to answer for them, what the state of it is now.

Susanne Hamscha  13:34 
Well, let's talk about the US. So in the US, the different rights movements which gained traction in the 1960s, obviously contributed to the emergence of disability rights advocacy, and the rights movement that eventually culminated in the ADA. Disability was considered to be very much a personal issue prior to the disability rights movement. So there were not too many political or governmental organizations that existed to support disability advocates. But, you know, I was hoping that you could talk about how disability activists have worked to challenge prevalent stereotypes, prejudices and ideologies that we commonly associate with disability. I'm thinking about President Roosevelt, for instance, and his refusal to be publicized in a position of vulnerability, which demonstrates the stigmatization of disabilities and reinforces this ideology that disability equates to weakness, to having a body that is not productive. So I was wondering if you could talk about how disability activists have challenged those ideologies and helped us arrive at a more nuanced understanding of what it means to move through this world as a disabled person?

Kenny Fries  14:52 
Yeah, we could work a little backwards. I mean, the, the pinnacle, supposedly, of the of the disability rights movement in the United States was The Americans with Disability Act, which was passed in 1990, overwhelmingly passed in 1990. But subsequently, I mean, the main thrust of the of the ADA was basically about employment and the employment of disabled people. But if you look at the statistics, that really hasn't changed much in the 30 years, since the ADA. It's still around, I don't know, 35, 36% of disabled people are employed. There are many reasons for that. And one of which is that the court decisions whittle down what the ADA can be, etc, and so forth. But before the ADA, in the 70s, there was Section 504, which was about, basically, any federally funded program had to have equal access for disabled people. And that landed up with passing, but then the executive branch of the president didn't do the guidelines that were needed, and it took a sit in, in San Francisco, organized by the disabled community, and Judy Heumann, who is a well known disability activist, to have those regulations built.

And I think, these things came on - basically built on the model of the civil rights movement in the United States. But previously, there were groups, I mean, as early as the 1930s, there was the League of the Physically Handicapped. And the irony, you mentioned, FDR, being disabled during that time, when the WPA, the Works Progress Administration, were giving out jobs to people, you know, to get the economy moving. Disabled people were just stamped PH, for physically handicapped, and got money but did not get jobs. So it shows you this whole idea that disabled people can't work. It's a medical model of disability, where what your body can and cannot do is the is the ultimate decider. And they're often wrong.

It's a hidden history. I mean, that's something I've always talked about, there's this history of the United States that goes back to the 19th century of Ugly Laws, which then pertains back to what happened in Germany in the 1970s, with the Frankfurt case, so disabled people shouldn't be in public. And the last of those laws wasn't annulled until 1974 in the United States. And then you have the major Supreme Court case, Buck v. Bell in the 20s, in 1927, where the sterilization of disabled people was okay. The famous quote by the Justice Oliver Wendell Holmes, three generations of imbeciles is enough. So there's a lot of - eugenics was alive and well, in the United States, as well as Germany and Canada, the UK, all over the world.

Susanne Hamscha  18:13 
I realized that much of this is pure speculation, of course. But where do you see us go from here? How is this current crisis, the COVID-19 pandemic, going to affect disabled people and the representation of our concerns and demands in the political arena long term?

Kenny Fries  18:31 
I'm not not optimistic about it. I think that once this is over, things will go back to the way they were. Yeah, that's it. I mean, look, look at what's happened. I mean, I know many people, students and teachers who are disabled, that always asked for the reasonable accommodation, as the ADA has it, to use the internet to teach and to learn, and were denied all the time. Look what's happening now. That's what everyone's doing. And a lot of these platforms are inaccessible.

Another thing, you started off the whole conversation by setting the context that it was the anniversary of T4 and the "test killing" of Brandenburg, etc, and so forth. And I queried an editor at a very well known publication about writing a piece about that. And the response was, I don't know why I would want to publish something about an anniversary that nobody knows about. You know, okay. I mean, granted, I have an editor at the Times and there's a disability series and it was published there. Just the fact that people say things like that. And also  the whole comparison between the eugenics now and the eugenics that happened earlier, whether it was the Third Reich or in the United States or the UK sterilizations, etc, and so forth. People don't want to see the connections, and again, they aren't the same things, the root might be the same, but they aren't the same things. But to deny that there is a connection seems really off to me. To me, the only way things will change is when disabled people are the gatekeepers, because it's just not going to happen otherwise.

Susanne Hamscha  20:25 
Well, thank you so much, Kenny, this has been a very interesting and informative conversation. I would like to try to end this on a positive note, and end with a question that I'm stealing from your memoir, actually, from Body, Remember. You open the preface of the seven-year anniversary edition of your memoir with the question, "What is the value of one person's story?" And I would like to ask you if you can tell us the answer to this question. What do you think is the value of one person story?

Kenny Fries  20:58 
You know, I don't know if there's an answer from my perspective. I think the answer is in the people who hear the stories perspective. And it's what people make of the story. I mean, this relates in a way to what Rosemarie Garland Thomson, the Disability Studies scholar, talks about in her book Staring, that we're going to take as a given that people will stare, but then she talks about what good staring is and bad staring is. And good staring is basically something that leads to action. So I mean, for a very bad generalized example, you see a homeless person, and you look and you see what the situation is, most people walk on. That's it. It's the person that acts that has the empathetic action that happens. And so hearing somebody's story, I don't think is enough. It's basically what somebody does with that story afterwards.

And if you want some, some optimism, there's a large, growing group of younger disabled activists and artists in the United States that are basically doing amazing work and some of my work recently is bringing those voices together and to cross generational... And I'm about to publish the first in a cohort of a series called Disability Futures in the Arts, which is five younger, disabled artists of you know, writing about role models, history, their work, where they get their work from, etc, and so forth, what they learn. So, as I say to  my friend Perel, the performance artist who I've been working with on their piece - we've done it in Berlin, and recently in Hamburg, called Life (Un)Worthy of Life - I said, I'm passing the torch. I'm 60, I've been doing this for a long time. And luckily, there's great people like Alice Wong, who was very big in the Crip The Vote movement and her book, and her program, Disability Visibility. Very important things happening.

Susanne Hamscha  23:26  
We've come a long way, and we have a long way to go. The history of disability is very much a hidden history, as Kenny has said. He has set out to recover this history as the carriers witness. And there's a vibrant activist scene that tries to make sure the voices of disabled people are heard and considered. But it is on all of us, really, to be wary of the most recent resurgence of eugenic discourses brought about by the COVID-19 pandemic, a health crisis which disproportionately affects disabled people.

This concludes our current episode of Fulbright Forward. Thank you all for listening, and I hope you will join us again next time