Autism and Disability in Nazi Vienna

This program’s original recording transcript is below. This transcription was created automatically during a live program so may contain inaccurate transcriptions of some words.

Ari Goldstein: I'm Ari Goldstein Senior Public programs producer at the Museum of Jewish heritage living memorial to the Holocaust.

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Ari Goldstein: Welcome to today's program which will explore the experiences of people with disabilities under Nazi ISM.

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Ari Goldstein: diverse group of people that is far too often left out of the narratives that we tell about exclusion and persecution, both during the Holocaust and here in the United States.

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Ari Goldstein: We have two esteemed and deeply knowledgeable guests, but that's to explore the subject.

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Ari Goldstein: Dr Edith schaeffer is a prize winning historian at the University of California Berkeley for 2018 book asperger's children the origins of autism Nazi Vienna.

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Ari Goldstein: tells part of the story we're going to explore today it's a stunning Expos a of Nazi doctor Dr Hans Asperger and it's well worth reading, you can order the book at the link in the zoom chat.

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Ari Goldstein: In conversation with Edith is our host Dr TIM Shriver a lifelong educator and disability rights activists who serves as chairman of the Special Olympics.

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Ari Goldstein: As Edith and TIM get into their discussion and presentation, please feel free to share questions in the zoom Q amp a box and we'll try to get to as many as we can, towards the end of the hour together.

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Ari Goldstein: That further ado Thank you again to all of you for being here welcome TIM and TIM feel free to get.

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Timothy Shriver: Thanks, thank you, I thank you very much for the introduction thanks everyone looks like you have a wonderful crowd here of people interested it's so.

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Timothy Shriver: Affirming honestly for me to be not just with Edith but with so many people who care about the issues that we're going to talk about today.

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Timothy Shriver: It has been for in in most cultures and in most times in history, a subject around which very few people have interest.

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Timothy Shriver: And I people often ask me what's The biggest challenge facing people with intellectual developmental disabilities like autism today.

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Timothy Shriver: I always have the same answer negative attitudes and indifference that's our biggest opponent, here we gather with people who are not in different.

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Timothy Shriver: And with people who are open minded and with people who want to learn and with people who care.

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Timothy Shriver: That we understand deeply and that we remember and that we bring our remembrances and our understanding to our daily lives, no one better equipped to help launch this conversation than Professor schaeffer already you've heard about her work or teaching.

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Timothy Shriver: She has begun to peel back the layers of the onion in a painful but essential way around the role of the Nazi Holocaust leaders.

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Timothy Shriver: In the in the in the creation of and the development of and the advancement of a eugenics field.

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Timothy Shriver: That continues to work subtle negative energy in our country in the world today, so we are not here, I would argue, just to talk about history.

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Timothy Shriver: we're here to talk about the effect, history has on us right now, but without further delay.

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Timothy Shriver: And with deep gratitude, I want to hand it over to Professor schaeffer and let her take us through some of the findings in her very important recent book and get the conversation started, so we can all join in Edith over to you okay.

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Edith Sheffer: Thank you so much sorry and TIM for the kind introduction, we thought that we begin today by just giving an overview of what happened in the Nazi period, this is.

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Edith Sheffer: The fate of people with disabilities as a lesser known chapter is Ari and TIM had said, and I just wanted to start by giving some background so R ev can start with the next slide.

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Edith Sheffer: So the third rise above all sought to create a unified national community and, as we know, the Holocaust, the extermination of 6 million Jews and other populations deemed undesirable.

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Edith Sheffer: Part of this was I the idea of eugenics up breeding parts of the population that were deemed desirable and excluding those with disabilities who were deemed to be.

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Edith Sheffer: contaminating the gene pool or a drain on financial resources, and you can see the societal them on the bottom of the slide says life without hope.

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Edith Sheffer: Next slide.

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Edith Sheffer: So this began the persecution of people with disabilities, with forced sterilization TIM can speak to this in the United States, as well the Nazis drew a lot of inspiration from what was happening here and.

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Edith Sheffer: Those circle of people that were deemed hereditary ill was a constantly expanding category from schizophrenia to huntington's to.

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Edith Sheffer: epilepsy different kinds of disabilities but also it would then in circle people who were deemed to be workshop or have problems with alcohol in the end, almost half a million people were forcibly sterilized about 400,000.

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Edith Sheffer: So the next slide.

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Edith Sheffer: In July 1939 the Nazi regime began its first program of mass murder and this predates the Holocaust, it was the decision to kill children under three who were seeing to be born with defects.

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Edith Sheffer: And, unlike other programs of Nazi killing, this was to be legal they were working on a law, and this was to become a permanent part of the health care system.

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Edith Sheffer: kind of an extension of abortion, if you want to think of it like that this was not something to be hidden, but something very much out in the open.

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Edith Sheffer: Next slide.

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Edith Sheffer: This expanded then again we're still in 1939 to the killing of adults who are deemed to be disabled.

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Edith Sheffer: And this was a much larger operation, in contrast to the killing of children.

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Edith Sheffer: The killing of children was meant, as I said to be a public health issue and children were supposed to have purportedly scientific files and.

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Edith Sheffer: They were screened the killing of adults with Disabilities was really a mass emptying of a silence and you can see here that they were killed in.

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Edith Sheffer: gas chambers in crematoria and there were six killing centers inside the right, it was widely known what was happening.

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Edith Sheffer: And people could smell the stench of ashes in their daily life.

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Edith Sheffer: This is something we can talk about in the discussion, but there was widespread protest and resistance to this movement and, as we all know, there wasn't to the killing of Jews.

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Edith Sheffer: And, to the point where it was openly discussed there were leaflets distributed in Hitler shut down this program the tea for program in August 1941.

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Edith Sheffer: The personnel who invented the technology for the gas chambers of crematoria were sent East to implement this technology on extermination camps against Jews, but this technology was invented for the purpose of killing people with disabilities.

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Edith Sheffer: Next slide please.

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Edith Sheffer: So i'm going to concentrate on the killing of children, because I think it's.

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Edith Sheffer: An underrepresented side to the the Nazi killing programs where's the killing of people with adults was indiscriminate and in a lot of ways, you know reminiscent of what happened with other populations, it was about a quarter of a million adults were killed.

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Edith Sheffer: The child euthanasia Program.

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Edith Sheffer: victimized between five and 10,000 children and these children were cared for by women, this wasn't the kind of mass selections that you saw the extermination camps.

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Edith Sheffer: These nurses knew their wards names they change their sheets they fed them daily, this is a very intimate kind of killing and they would.

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Edith Sheffer: sprinkle barbiturates into the food that the children eat and or inject barbiturates into the children, and so they grew weaker.

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Edith Sheffer: or contracted diseases like pneumonia so it would look to be a natural cause of death, but in fact it was hastened by the medicine that that these nurses were giving next slide please.

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Edith Sheffer: And so, as our as TIM mentioned my work, I think it's really important to realize how deeply the euthanasia program penetrated the medical community.

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Edith Sheffer: I wrote a book about Dr Hans Asperger who's famous of course for developing the autism diagnosis that we still use today.

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Edith Sheffer: And I uncover his role in this network, he did not work at a killing Center himself, but he transferred children who he deemed.

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Edith Sheffer: undesirable and magical to the centers and so here are pictures of two children had to Schreiber and Elizabeth Schreiber who he transferred and hitesh Labor was severely disabled from meningitis and diphtheria, and her mother is known to have said to the presiding Dr rich eagle grunt.

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Edith Sheffer: won't it be better if she should die as she has nothing to live for any way and her to was indeed put to death, and when you look at these files.

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Edith Sheffer: You can see in fact that some parents requested their children be sent to killing centers and there's evidence that Asperger himself was sensitive to these requests and.

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Edith Sheffer: In the files there also thank you, notes from some parents upon their children's death for for having their children killed.

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Edith Sheffer: Elizabeth Schreiber who's here who Asperger also transferred could speak a single word mama that she was known to repeat over and over again at the killing Center and she would cry and she would hug the nurse for comfort both children died within just a few months of asperger's transfer.

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Edith Sheffer: Next slide.

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Edith Sheffer: So this is a panel of course on on disability, but the Nazi.

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Edith Sheffer: scrutiny of disability was ever more and more minute So these are two girls that asperger's clinic transferred.

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Edith Sheffer: That I you know he defined as a social, they were running away from home and they were behavior problems at school and both of these girls were transferred it's seen to be unable to integrate with the broader community and, if you look at.

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Edith Sheffer: You know some of the records of these killing centers about 10% of kids had no diagnoses at all about.

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Edith Sheffer: three and five had amorphous diagnoses of imbecility or idiocy so again, you know really shows the subjectivity behind you know social constructions of what the disability means okay next slide.

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Edith Sheffer: um unfortunately the voices of these children have been lost over time, it was very stigmatized to have even been in an asylum.

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Edith Sheffer: And a lot of these children were unable to speak for themselves so, unfortunately, we do not have a great record of their experiences, the documentation Center.

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Edith Sheffer: In Vienna, the Center of Austrian resistance conducted 12 interviews that are available online in English, that I would recommend if you're interested in this topic to watch in full.

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Edith Sheffer: They are harrowing and they just describe continuous brutality at the centers and addition to starvation port medical treatment constant physical abuse.

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Edith Sheffer: i'm going to be showing a couple clips that these children will be discussing they would be issued different forms of shots they were vomit shots that would make you vomit.

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Edith Sheffer: There was the sulfur cure, which would induce pain in you know, whatever appendage it was injected in for a couple weeks let's go to the next slide in here about the experiences of free Driscoll outside.

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Edith Sheffer: Okay, so the next survivor is going to describe his experiences.

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Edith Sheffer: In the killing pavilion.

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Edith Sheffer: where he was when he was about five or six years old, and you can see he's going to be describing a very sedated state where he's not even sure what's going on.

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reduce traffic is progress.

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we're looking to penalties for professional designers on today.

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we'll be talking.

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Edith Sheffer: So, as you might imagine these survivors also describe what life was like in the enduring trauma after the war, here are some clips again from survivors, the next slide.

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Edith Sheffer: Oh, forgive me children were also subjected to medical experiments.

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Edith Sheffer: There were known tuberculosis vaccines that were tested on them and then children would be put to death in order for their autopsies to be studied.

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Edith Sheffer: This is a picture of high gross who in Vienna harvested about 400 children's brains and he published research on these brains up through the.

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Edith Sheffer: And you know body parts from the children at Spiegel ground would be circulated among different medical labs and Vienna well after the war.

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Edith Sheffer: Okay next slide and we'll get.

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Edith Sheffer: From Rudolph cargo what his post where life was like.

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I just got an answer he drove it.

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to submit food for this the way co writer Co.

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For we will come and go at it that way.

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Edith Sheffer: And then the next slide.

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believers are going.

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To be our heads of any human.

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Human conduct the political figures at https that the stuff that I was wanting to take your further.

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into this debate you're.

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disappointed.

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it's a spiritual gift.

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about this note, that is.

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get them in it's better to.

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me that's.

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Just me.

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Because.

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Typically, from the disabled payment or.

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will cost you a nice.

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Edith Sheffer: Okay, and so the last slide.

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Edith Sheffer: um one of the reasons I wanted to show these clips is because they are so rare, we are very lucky to have them and, as the survivors, you know move on through time I would really put in a plea for trying to collect as many of these children's stories as possible.

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Edith Sheffer: it's it's an angle of Nazi extermination that that I said it's very different from the kind of indiscriminate killing that was happening and.

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Edith Sheffer: You know the experience of children is something that's so important to understand, this is only become recognized and commemorated in recent years in Vienna and i'm just happy today to be having this conversation to bear witness to these stories, thank you.

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Timothy Shriver: I think it's um.

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Timothy Shriver: it's worth just taking a moment, thank you for to thank you for for doing the hard work to collect these but maybe also for all of us.

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Timothy Shriver: hundred and 50 plus of us just to.

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Timothy Shriver: Let these, but the words you've shared with us and the words the survivors have shared with us again.

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Timothy Shriver: So if people are comfortable, I would just invite a few seconds here now just of.

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Timothy Shriver: silence.

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Edith Sheffer: If I may break in I just saw a question that was posted that I think it's important to answer was this only in Vienna know.

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Edith Sheffer: My book is about Vienna and that was the second largest killing Center but the estimates, is there were 37.

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Edith Sheffer: Special children's wards that we're engaging in this kind of killing 37, and this was inside the right many people knew what was happening.

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Edith Sheffer: This is kind of an open secret.

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Timothy Shriver: So you just let me, let me start, if I can the questions, a little bit with in some ways, where where you started What can we learn from this history that we don't already know its distinctive from what we know about the horrors of the Holocaust what's.

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Timothy Shriver: What comes to us from from these stories that.

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Timothy Shriver: that we need to make sure not to miss that we might not have known already.

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Edith Sheffer: and

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Edith Sheffer: Coming at this as a historian of Nazi Germany.

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Edith Sheffer: To me it really casts the regime as.

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Edith Sheffer: A project and trying to create a homogenous fascist whole that it's a fascist division of people that look and act and behave the same ways.

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Edith Sheffer: And in this hierarchy there's some people who cannot be remediated right there, Jews and there are these children who are defective and they must be exterminated.

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Edith Sheffer: But in this hierarchy, there are also people that you can rehabilitate and so there are different categories of worthiness and unworthiness and in my book, I talk about the Nazi regime as a diagnosis regime and it's this project of identifying.

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Edith Sheffer: with ever greater nuance different characteristics and I think this is one of the reasons that autism diagnosis emerges from this period it's looking for children with ever milder and milder defects that can then be labeled.

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and

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yeah.

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Timothy Shriver: So a diagnosis regime.

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Timothy Shriver: If this is if what we're seeing in this is the the creation of homogeneity the search for a fascist singularity of human form.

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Timothy Shriver: Do you worry at all, but some of this is still present in the way in which we approach human exceptionality difference autism itself.

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Timothy Shriver: disability.

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Edith Sheffer: You know I find that a fascinating question and it's something that i've wrestled with How could a diagnosis that emerges, and this collectivist vision.

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Edith Sheffer: How are we living in a society that they that theoretically celebrates diversity of all kinds and still look at our children with ever greater critical eyes.

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Edith Sheffer: And I don't think it's a coincidence that the Asperger diagnosis really caught on in the 90s, and that was with the Ritalin generation and ADHD and really the entrance of school counselors and looking at our children in terms of milestones in a different way.

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Edith Sheffer: In so I would also say the asperger's diagnosis is unusual because it replicates a kind of you genesis hierarchy right when we look at the autism spectrum people still use the term asperger's even though.

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Edith Sheffer: The medically the condition doesn't exist anymore to differentiate between people who can be productive members of society right and then those with autism, who are decent or disabled.

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Timothy Shriver: yeah yeah.

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Timothy Shriver: Maybe eat if there's a lot of questions and they're good ones too i'm wondering if it would would it be helpful if I shared a little bit of the of the American story here.

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Timothy Shriver: And i'm just going to take the liberty of suggesting maybe i'll just for a few minutes share my screen if that's all right.

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Timothy Shriver: I don't hear from you, I think that's okay.

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Timothy Shriver: I do that.

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Timothy Shriver: Okay, so just a compliment.

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Timothy Shriver: This is, this is the American story gang I think sometimes we wish this work was.

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Timothy Shriver: At further distance from the American experience this i'll just start here this, this is a film that came out in 1916.

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Timothy Shriver: This was championed by Dr Harry hazelton who plays himself in the film The film is the story of a doctor who helps women.

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Timothy Shriver: counsel them so that they can allow their newborn children to die if they are born with disabilities and include scenes of.

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Timothy Shriver: denying the baby of care and then, finally, the exultant mothers who have been rid of their children with disabilities, this film of the quote below is from Columbia University sociologist the idiotic child should mercifully be allowed to die, this is.

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Timothy Shriver: it's worth noting also that during the Nuremberg trials several defendants used the experience of the American.

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Timothy Shriver: Institutions as an explanation for and as a justification for their behavior so there was a there is a painful very painful link between.

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Timothy Shriver: This history that Edith just shared and our own history i'll just go very quickly to a slightly personal example, this is the family of my mother, my mother is the person at the far left of this picture with her eight siblings and two parents as they headed off in.

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Timothy Shriver: In before the war two to the United Kingdom my grandfather in the Center there was.

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Timothy Shriver: named the ambassador I don't share it for for the rest of the people, but the person, the third from the Left is my aunt Rosemary.

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Timothy Shriver: Who was born with an intellectual disability, two years after the black stork was a raging success as a as a film she was born in 1918.

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Timothy Shriver: And in my view, it's it's either heroic or a great chance or love or some combination that encouraged my grandparents to keep Rosemary you can see her, she looks.

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Timothy Shriver: very much like her, brothers and sisters, they are to keep her at home and raise her with her brothers and sisters, rather than sending her to and.

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Timothy Shriver: which many families could be wealthy families would have chosen to do, to this day I don't know exactly why they did so, but just to know that this is the scene you'll find and I use the picture from 1946.

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Timothy Shriver: Not 1926 or 36 of these are postwar pictures these, these are the result of the eugenics program the United States.

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Timothy Shriver: This is the kind of care, I can use the word that was in effect authorized by the quote at the bottom 1927 Oliver Wendell Holmes justice Oliver Wendell Holmes wrote the opinion for the Court United States Supreme Court.

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Timothy Shriver: In a case known as buck the bell that authorized the forced sterilization of women, mostly with intellectual disabilities and institutions on the.

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Timothy Shriver: justification that three generations of imbeciles are enough, we have to cleanse the population of these defectives they should not be allowed to procreate admission be sterilized, so this is.

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Timothy Shriver: That the the buck the bell decision is in the late 1920s.

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Timothy Shriver: Almost 10 years before he just picks up the story.

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Timothy Shriver: It seems to me at least I don't know the exact history but roughly well before the story gets picked up in Nazi Germany I won't go through all this, but just to say that this is an old story, we see it in our.

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Timothy Shriver: In our in some of the great Jewish texts, there are there's this constant story that somehow we human beings are.

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Timothy Shriver: prone to rejecting important parts of who we are the stone the builders rejected, we see in the Psalms and in Isaiah.

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Timothy Shriver: The idea that the person we reject is a is a part of us, and in some ways, the key to our healing I won't go through the story of my.

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Timothy Shriver: rosemary's life in great detail but i'll just say, these are just fun pictures, this is my aunt Rosemary who had intellectual disability with my mother.

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Timothy Shriver: When they were young and with her brother who later would become President Kennedy when they were young I won't go through the details here, but just to say.

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Timothy Shriver: Fast forward this is the dental care for a person with intellectual disability in the United States back 10 years ago James pierce seen at the age of 40 in at a clinic in in the United States.

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Timothy Shriver: This poster retards, we all know, one was photographed on the wall of the Faculty lounge at a children's hospital in the United States.

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Timothy Shriver: about six years ago.

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Timothy Shriver: So this part of the reason I asked Edith about this lingering eugenic identity mentality.

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Timothy Shriver: Is that I think sometimes we don't even know it, we in our working Special Olympics, we launched a campaign, some time ago, just around the use of the word retard.

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Timothy Shriver: As and people were actually quit you know when we started at 80% of the people we polled rejected the idea that they should refrain from calling people retards.

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Timothy Shriver: That shifted over time, thank goodness, but there's a certain sense, in which wait a minute, this is a population after all.

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Timothy Shriver: That we can insured, and all I have to be able to humiliate marks blue.

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Timothy Shriver: They don't fit in they're not smart enough that I don't want them hired I don't want them in my neighborhood I don't want them in my school I don't want them in my child's well I don't want them at my place of business, it is almost still almost still acceptable.

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Timothy Shriver: Speak this way and the conditions are even worse, this is the, this is a photograph taken by a special effects volunteer to refugee camp.

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Timothy Shriver: And you can see in the lower right hand corner of the screen, this is childcare for a child, with intellectual disability he's changed every morning and the expression change or tide is not uncommon in in places where there are no supports and where the stigma is still overwhelming.

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Timothy Shriver: This is melodic molokini Abba Cora.

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Timothy Shriver: Who actually the story ends quite well I won't I won't bore you with all the details here, so I just wanted to offer that that sense in which the American narrative and the ascendance.

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Timothy Shriver: Of a sort of a tyranny of normality at tyranny of intelligence singularly defined as IQ type intelligence, the ascendance of singular forms of success.

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Timothy Shriver: If we calibrate success only in a very narrow band, I would argue, you end up finding situations where, how can a child, with down syndrome or child with autism or child with aspergers we still use that language.

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Timothy Shriver: A child with Williams, a child, with crowder Willie, how can they possibly be a success in life, our definition of success will not allow them.

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Timothy Shriver: How can they possibly be productive at work, what we consider productive does not.

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Timothy Shriver: Accept the ways in which these children and young and then later adults, contribute to the world, so I offer all bad maybe back to you Edith and and ask you how we can learn how we can generate how we can bring this knowledge to scale in our country and and what it would mean.

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Timothy Shriver: If in our contemporary world we actually took seriously the dignity and beauty and value of every life, I mean are we are we still a ways from that goal.

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Edith Sheffer: And you know I would say is the mother of a son who's been diagnosed with autism we've had.

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Edith Sheffer: varied experiences and I do want to say in the special education Community we've had some tremendous experiences I feel like with.

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Edith Sheffer: The people at my son's school he's not treated like a label at all, it really is an individualized education plan they see him as him.

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Edith Sheffer: i'd say out in public media images, there is a modernization going on, and there are you know some of the things that you were showing about stereotypes that then get reflected.

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Edith Sheffer: But I would say it's a mixed picture I with my book, I was very gratified.

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Edith Sheffer: It how uncontroversial, it was when I wrote it people were telling me Ob braced for blowback.

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Edith Sheffer: You know not only minimizing asperger's work but not really taking the point about the eugenic hierarchy of how to label these children and who becomes worthy and who becomes unworthy and how we've replicated those labels in.

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Edith Sheffer: Calling people with autism low functioning or mid functioning or high functioning and then the discussion of my book.

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Edith Sheffer: I see a lot of critique of these functioning labels now right a lot of critique of the term asperger's, so I think raising disease choose one by one.

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Edith Sheffer: I think society is changing, I think, in a lot of ways, and you know neuro diversity might be one of the final frontiers of this, but I think there's going to wear what what's your sense of this.

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Timothy Shriver: Well, I think, no I think it's great it's great that you point this out because I I do I i'm not have the view of it, nothing changes.

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Timothy Shriver: And I think if you looked at my mother died, the over 10 years ago.

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Timothy Shriver: few years after my own Rosemary die if you looked at the span of their life roughly she would she would have been 100 next month.

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Timothy Shriver: That century has resulted in enormous change for people with intellectual developmental challenges differences are, firstly, even as you point out the term.

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Timothy Shriver: is an enormous strides ahead of idiot imbecile moron I mean, can you imagine, these were medical terms, as you pointed out, so I think lots has changed.

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Timothy Shriver: And I think the broader campaigns, we are all in the midst of of awakening to the ways in which we historically have humiliated marginalized even oppressed various groups identities religions, I think that is a is a good and healthy record my own view is it's a good and healthy recommend.

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Timothy Shriver: And it will be made complete when we take the reckoning, and that and the awareness that you've taught us through your book and converted into still more complete action and commitments, employment, housing, recreation ation to full life right to full and complete.

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Timothy Shriver: Equality dignity, so I think we're well on the way.

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Timothy Shriver: But I think disability remains in most parts of the world still a very, very, very painful.

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Timothy Shriver: situation, some of it brought on by the disabling conditions themselves, if I can even use that language but still most parents, when I asked them what's The biggest problem it's it's attitude.

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Timothy Shriver: And they rarely say it's their child.

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Timothy Shriver: They rarely say it's autism, although you know, of course, many times, it is these conditions can create very painful certain circumstances, but almost everybody I talked to would still say played.

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Timothy Shriver: For people to see their children, their family members themselves.

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Timothy Shriver: As full complete whole people.

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Timothy Shriver: And we're still on a journey in that regard.

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Timothy Shriver: So let me ask you can I can I go back to the the tapes one of the survivors.

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Timothy Shriver: who spoke so poignant Lee about the fear of her body, and so on.

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Timothy Shriver: She said, I think, at one point, how can I be angry evil had no name.

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Timothy Shriver: Can you share what what what you think that means what what the what with the message, there is evil had no name.

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Edith Sheffer: And she says at another point in the interview, it was just part of everyday life.

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Edith Sheffer: Right.

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Edith Sheffer: Which is an interesting perspective when we think about how these extermination programs were dealt with in the post war period where it was very much bad singling out the most couple people.

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Edith Sheffer: and letting the hundreds and hundreds of people that enabled it who made it an everyday experience the nurses were not charged the transferring doctors were not charged.

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Edith Sheffer: But I think the children who were there saw perpetrators and everybody right and that was their experience they were getting beaten by orderlies they were being deprived food by cooks and it was just something that was endemic and how people saw these children.

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Edith Sheffer: But what I think is fascinating about the experience, then in the post war period is to hold just a handful of major perpetrators accountable is that then exonerates society from an evil system that everyone's complicit in it yeah.

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yeah.

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Timothy Shriver: So a couple of questions Edith Center on the very difficult issues around eugenics today and prenatal diagnosis.

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Timothy Shriver: What do we do one person asks about genetic diseases that show up in Jewish populations that are being screened for prenatally.

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Timothy Shriver: I think most of estimates are that prenatal diagnoses have down syndrome, the United States, result in somewhere around 90 plus percent termination rate Denmark.

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Timothy Shriver: Almost go close to requiring not quite there but requiring.

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Timothy Shriver: pregnancies be terminated when their prenatal diagnosis what's, how do we navigate the you know outside the you know the cauldron of American politics conservative and progressive.

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Timothy Shriver: Ideas around choice and life, how do we navigate this just from the point of view of what we've learned about eugenics.

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Edith Sheffer: and

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Edith Sheffer: i'm going to answer like an academic here.

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Edith Sheffer: Not as a human being, but just I think it's so important to call out what's happening right and label it.

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Edith Sheffer: I want to apologize, I was using the Nazi term euthanasia, for example, and when you think about terminating say a Downs pregnancy there's almost a sense that you're doing it for.

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Edith Sheffer: The creature that would have to bear this life, do you see what i'm saying like there's something in the language that's exonerating.

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Edith Sheffer: And I think just to look at the cold hard facts like no that was not euthanasia these children could have led full healthy lives and we need to define what's a full healthy life.

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Edith Sheffer: Rather than from the perspective of the parent that has to deal with whatever that life becomes I.

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Edith Sheffer: So I i'm not here to pass judgment or to share my personal views, but I just think.

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Edith Sheffer: labeling looking at things cold and in hard facts I mean a child, with down syndrome can live a very full healthy life.

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yeah.

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Timothy Shriver: Did this work.

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Edith Sheffer: that's about this, I mean you're more immersed in this, I mean i'm stuck in the past.

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Timothy Shriver: yeah well uh I think I think there's a chance to affirm the value of these lives that we haven't quite built, yet I think many people, for instance, young folks when they get pregnant and making her down syndrome, they they there's a specter.

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Timothy Shriver: there's a haunting horrifying negative life that awaits them the truth is actually almost invariably not that way.

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Timothy Shriver: And so we don't really tell the story of the full life of a person with down syndrome, we don't eat those moms or those expectant parents don't hear that version.

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Timothy Shriver: Whatever choice they decide to make obviously that's a both a political and immoral one, but I think, from the point of view, people who advocate for love and care about and you value the lives of people with.

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Timothy Shriver: with special needs it's important that we tell their stories, so that people will see them, I mean we had a an event.

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Timothy Shriver: The Special Olympics movement had an event some years ago about five six years ago on Capitol Hill day when a lot of our athletes would go up to meet their Congress persons and senators and so on, and.

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Timothy Shriver: had been all day meetings and people wanting all over the Senate in the House in Washington DC and people have flown in very exciting and, at the end of the day, we had a little reception.

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Timothy Shriver: And at the end of the reception, there was a few comments and remarks and men, some members of Congress were there and.

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Timothy Shriver: And there was sort of an open MIC and one of the athletes who was there, frank Stevens from Virginia came up and said I have something to say sweet spot at the podium and he kind of in a holding way he said I you know I want to say my life is worth living.

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Timothy Shriver: And you know the room got quiet.

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Timothy Shriver: And I think it got quiet because we knew he was saying something controversial.

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Timothy Shriver: In the eyes of many people, maybe not the people in the room, but maybe that's what he felt that day walking around the capital, no there's no Statute and the capital of people with down syndrome.

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Timothy Shriver: You know there's no statues in the capital of his community and.

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Timothy Shriver: So I think we have to, we have to just continue to tell the story that choosing life, if I can put it that way that's my my own personal the choosing life.

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Timothy Shriver: Is is something that the culture and the country and communities will support people, and then you know, obviously, women and young couples are.

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Timothy Shriver: Expecting couples have to believe they're going to get support it, not enough to say Oh, you know take it on Good luck go bankrupt, you know have stress, for the rest of your life, but you know many blessings upon you that's that's.

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Timothy Shriver: empty, so I think we have to build a culture and a country that actually values the diversity of human experience, I mean.

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Timothy Shriver: I always say to people will know we hit it when you go to a magazine stand.

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Timothy Shriver: And you see on the cover not just the beautiful starlets of Hollywood and the beautiful models of York and the beautiful wealth of Silicon Valley and the beautiful brilliance of artists and other celebrities, but when you start to see our folks.

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Timothy Shriver: not yet hasn't happened yet, to my knowledge, no other than dedicated journals have never.

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Timothy Shriver: i've never i've never done it so yeah I think we still have a ways to go, but I think we can tell the story better.

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Edith Sheffer: yeah.

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Timothy Shriver: So let me ask you, but going back to night I know you don't want to get too personal and you want to stay pretty academic and scholarly which is fine.

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Timothy Shriver: But what from the time you started researching this book to the time you sent those last galleys back what changed in year what what what changed.

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Edith Sheffer: and

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Edith Sheffer: This book was excruciating to write.

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Edith Sheffer: I had heard this the tale of Asperger was a heroic one that he rescued children with disabilities, this was on his Wikipedia page and so when I set out to write the book, it was going to be a happy story.

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Edith Sheffer: The idea was that autism was kind of like a schindler's list he labeled kids with it in order to yeah.

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Edith Sheffer: But from the very first file, I saw he was complicit in this killing system and that he would have killed my son.

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Edith Sheffer: And that very quickly became personal.

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Edith Sheffer: And you know my son grew up with me doing this work, I worked on this book for seven years and we didn't use language of autism at home when he was young.

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Edith Sheffer: We talked about individual challenges, he might have.

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Edith Sheffer: But he came, if I may share an anecdote how he found out he had autism, he was in fourth grade, and they were doing a disability day which you might.

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Edith Sheffer: Find ironic and they had cartoon characters of different kids with disabilities, so there was a deaf kid and the blind kid and you know guess what there was a kid with trains.

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Edith Sheffer: And you know with bullet points next to them with characteristics right, and so the cartoon character version of disability is how my son.

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Edith Sheffer: came to realize he had that label and he came home completely distraught he'd never seen himself as a label before or caricature before right and wanted to have surgery to have it taken out of his brain.

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Edith Sheffer: And anyway, but with writing this book he saw a lot of empowerment In it he actually wrote and the epilogue he wanted to add his own voice.

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Edith Sheffer: And he carried this book to school and show to tell us, teachers and was very proud of it, so you know not to sound sappy right, because this was a journey.

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Timothy Shriver: it's okay.

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Edith Sheffer: We do, for both of us and the argument became something I didn't know at the beginning, which is treat children as individuals, not as labels and that labels can do more harm.

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Edith Sheffer: than good and that's basically the the message of the book and that I I am positive, we are living in a society that's becoming ever more aware of difference, and I do think you know neuro diversity disability is the final frontier of this I hope.

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Timothy Shriver: yeah.

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Edith Sheffer: Yes, hockey that magazines, I hope we can get to.

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Edith Sheffer: School cartoons too.

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Timothy Shriver: yeah yeah yeah yeah I think textbooks and educational materials is a lot of talk in the chat about just try to address it quickly.

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Timothy Shriver: My own Rosemary who I mentioned in the presentation and the fact that she had an operation at George Washington university here in Washington DC.

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Timothy Shriver: A pre funnel bottom me when my grandfather concluded based on medical advice that that was the best treatment, this was a treatment that was being offered to 10s of thousands primarily women largely for mood disorders.

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Timothy Shriver: And and and sometimes for related kinds of conditions.

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Timothy Shriver: So I treat the issue of the just so people know that i'm not hiding from this, I have a book on this subject called fully alive, where I address what I believe was my grandfather's thinking, and you know there's a lot of different opinions on this so.

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Timothy Shriver: there's a lot of opportunity for people to pick their.

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Timothy Shriver: You on.

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Timothy Shriver: My grandfather's decision, it was really his decision.

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Timothy Shriver: But I, I see no evidence that he did anything out of anything less than love for her and the horrific mistake that it turned out to be, I think.

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Timothy Shriver: wounded him for the rest of his life and.

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Timothy Shriver: Was resulted in you know and we'll get Rosemary for the rest of her life so there's nothing happy about the decision but that's the way I read it so just so people know that's how I yeah.

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Timothy Shriver: Several people ask and if, when a slightly more.

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Timothy Shriver: little bit more detailed treatment of the issue it's in.

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Timothy Shriver: That book, which is couple years old fully alive.

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Timothy Shriver: Either what's what's you know for people who are looking back one of the great questions always comes at you know our you mentioned it in the chat also what do we do with data we learned our can is it.

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Timothy Shriver: Is it legitimate to.

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Timothy Shriver: to learn from to benefit from to advance science based on studies and data and.

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Timothy Shriver: That came from this period.

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Edith Sheffer: um I think it is.

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Edith Sheffer: And I know that's a controversial.

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Edith Sheffer: thought, but I think whatever good can be had.

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Edith Sheffer: is good that can be had mm hmm.

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Edith Sheffer: Now that's, not to say that you can.

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Edith Sheffer: You know i'm not justifying medical experiments, but.

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Edith Sheffer: My father, for example, was a heart surgeon that use journals on the hypothermia experiments in the North Sea to experiment with hyperthermia to operate on.

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Edith Sheffer: Premature children.

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Edith Sheffer: And he saved lives with that I can't argue against that.

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Edith Sheffer: So I don't know what are your thoughts.

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Timothy Shriver: I think I think I think any good that can come is good, as long as it's very clear that there's no there was no good in the decision to do the work that was done, I think everyone, we always worry that if we benefit from something that was horrific and.

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Timothy Shriver: scandalous that we will seem somehow to be condoning the core or the scandal, and I think we can make those distinctions, but it requires sense.

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Timothy Shriver: That renee is asked me to stop judging, and I mean I understand i'm sure her point of view and i'm I apologize if what I said.

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Timothy Shriver: sounded judgmental my it's hard to talk about these things, these are very difficult subjects and there's a lot of we can I have put my foot in my mouth many times, and for that I own responsibility and I apologize.

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Timothy Shriver: it's it's very these are these are very difficult issues, so I appreciate you you bringing to us such scholarly incredible and fact based wisdom and also bring us your personal story, I think.

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Timothy Shriver: These are, these are the moments in which we can see in the great complexity of the changes were undergoing now as cultures.

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Timothy Shriver: A path forward so that we can be sound and true to the past, also be sympathetic and understanding to people trying to chart a new and different future and for.

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Timothy Shriver: So, for your contributions, I want to just say thank you, I think we're pretty much closed out of time i'll give you the last two minutes of that.

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Timothy Shriver: share your final thoughts, but I want to say thank you and thanks to all those who joined them.

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Timothy Shriver: let's keep these conversations going to the best of our ability, these are important conversations to have even when sometimes as i've obviously done today we make you say things that won't one another and hopefully we can grow even beyond that.

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Edith Sheffer: yeah I mean I guess my concluding thoughts as these conversations are hard and.

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Edith Sheffer: And TIM i'm just want to echo what you're about I think it's so important to have and to find a way to discuss it right and to put these things.

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Edith Sheffer: out in the open and be able to to analyze them and and yeah half the frank conversations because that's it's in the shadows, where you know the lives of these children get hidden right yeah.

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Ari Goldstein: them and either, thank you both so much for spending your time with us today and sharing your insights and perspectives I learned a lot listen to you.

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Ari Goldstein: know our audience did to we as a museum, like many Holocaust museums, have not done enough over the years to properly tell the stories of people with disabilities and.

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Ari Goldstein: holocaust, so we are doing better in recent exhibitions and upcoming exhibitions and required to have you join us in that journey.

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Ari Goldstein: We did record today's discussion and we'll email everyone in attendance tomorrow with a link to the recording.

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Ari Goldstein: A link to both Edith and tim's books and some other resources and he does i'll have to ask you for that link to the original testimonies of the documentation Center in Vienna will include that as well and.

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Ari Goldstein: We hope all of you will consider supporting the museum's work to preserve the stories and lessons of the Holocaust, you can do that the link in the chat.

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Ari Goldstein: And joining us for upcoming events, I want to specifically spotlight, an event that we have on July 27 with Judy human an amazing disability rights activists in the US, who is Jewish and the.

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Ari Goldstein: grandchild of Holocaust victims in the Holocaust survivors so we'll hear from God, but her story next month, and the link to that is is in the zoom chat but.

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Ari Goldstein: Thank you, both again and wish everyone a good afternoon and that you continue to think about the lessons of the history that we got going to today.

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I can't.

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Timothy Shriver: Thank you enough, thank you.