Disability Studies and the Legacies of Eugenics

Potsdam Session

July 20th- Presentation by Swantje Koebsell on disability, pre-natal screening, and the history of forced sterilization

(Transcript originally completed for accessiblity purposes and should not be considered a verbatim account of the proceedings. This transcription is meant to represent a general sense and may include gaps and mistaken information. Please request permission to quote )

This is not a truly objective account, very much through my glasses.

The German disabilty movement never developed a social model of disability but aimed at nondiscrimination and the control of services by disabled people for disabled people, thus eugenics played a part, one could say, from the very beginning.

There was no infrastructure for disabled people … Starting in 1958 a parents' organization for mentally disabled people formed, it is still the biggest and most prominent organization for mentally dis people in Germany. It is called: Bundesvereingang Lebenshilfe
Co-founded by a psychiatrist involved in the T4 program, but no one talks about that.

In 1967 an umbrella organization was founded, a federal organization to help the disabled. Affiliated with 52 discreet organizations. It was called:
Bundesarbeitsgemeinschasft Hilfe fur Belinderte. This organization still exists.

In the 1970's it became modern to have integrated leisure groups, this idea coming from the children of the parents groups. From this came the idea for a club for disabled persons and their friends. That was in 1975. They were the 1st who participated in public actions against segregation of disabled people.

Ernst Klee organized a small group, it was a seedling for the movement. It was quite dominated by nondisabled people.
1979, saw the founding of the 1st cripple group who believed none of the existing groups was radical enough.

(She shows a transparency of an image and goes on to talk about it)
I quote from this cripple magazine and why do we use the term cripple? This term points out the distance between us and the so called nondisabled person. Segregation, overprotection, keeping us out of society. Talking about a particular German word about being hindered. Cripple is a more honest term. Lot of people are angry that we use this ugly name.

Franz Kristoph applied for asylum in Netherlands on the basis of being discriminated against because he was disabled. He did not get it.
It was talked about a lot in Netherlands, but not in Germany.

In 1980, the U.N. Year of Disabled People had a big impact. Groups organized “Year of the Disablist”. Provocative paper to challenge people was written by Franz Kristoph. It caused many emotional discussions.
In Feb – holidayers got a payout for having to suffer their holidays in the presence of disabled people. This was the birth of the movement, protests were aimed at changing things. What happened: People complained that mentally disabled people in thier hotel ruined thier holiday. The court granted them compensation and said they had the right not to share thier holdiday with these poor creatures.
Disabled people were very very angry. Because of the infrastructure from the U.N. Year of the Disabled(1980) which created a seemingly more positive attitude.

(Another transparency.)
This was for the U.N. Year for Disabled People. We had a special logo, trailers on TV, and it was a benevolent attitude, disabled people were also people. Left one is the official logo: "Understand each other, live together."

The one on the right – "a cugel for every cripple." ( a cugel is like a club or a stick)
It rhymes, and means disabled people standing for rights.
"Jedem Kruppel, Seinen Knuppel."

So the U.N. Year started with scandal – official opening ceremony, disabled people chained themselves to the stage, President had to speak elsewhere. These demonstrations are not going to solve the problem of disabled people, said the President.
Ungrateful disabled people “spoiled it”! Should have been a nice event with singing and dancing, but instead it was really a milestone for the disability movement in Germany.

Whe money for special transport was cut a hunger strike in the Federal Parliament followed. The officials were embarrassed.
After 2 days, they reinstated the status quo. Special transport back to how it had been before- works with vouchers. People were really really surprised.
Another highlight of the year was a big Rehabilitation Conference, where Franz Krustoff hit the President with his crutch. "You partner, having you learnt anything from (the first encounter)." President is highest representative of the German State. Following this incident Franz Krustoff was allowed to stay in the room.

Cripples Tribunal – analogy to Amnesty international tribunals on human rights violations. To make people aware of human rights violations for disabled people. Here the special situation of disabled women was mentioned.
Also interesting, there was a split. For the whole of the U.N. year, we were united. Then the question arose about whether it should ONLY be PWD (peoople with disabilities) to vote: only organized by disabled people. When those who had come with nondisabled partners, friends, etc left. those who were left were not enough to organize everything. So we had to talk.

Nation wide forum existed until late in the 1990s, people met irregularly to talk about disability issues.
In 1982, the movement very distinctively starts to focus on eugenics issues. Not been much research on the treatment of disabled people by the Nazis.. This also came out of the movement.

1982 was also important in terms of independent living. This model project created 6 independent living centers. Our cripple group was involved in this.
1983 brought cooperation with the Green Party on disability issues. Speakers for minorities. Led many disabled people to get involved in green politics.

In May 1983, at a conference on Independent Living in St Louis Missouri, we met Ed Roberts and others … visited CIL(center for independent living) in US. Already had ideas about counseling by and for disabled people, but wanted them not just for people who were paraplegics, but something more run by members, but this required lot of money. So we quit and this project never came into effect. We made the first step in the direction of a CIL.
1984 was important in terms of Eugenics. A book was published called “The Mafia of Benefactors” – from Nazi times till the 1980s. Led to renewed interest in human genetics, genetic counseling. Die Wohl Tater Mafia

There was a geneticist advising to have girls sterilized, someone broke into her practice and published her files. At that time it was not an official policy to have disabled people sterilized. In that same year, broadcast on TV about sterilization. It provoked me to write my first thesis on sterilization.
The title was Eingraffe (?) – Interventions. To grasp into something, get something out. About forced sterilization of mentally disabled girls and women before in and after WW2.

From this time on, some people got more into politics, some legal, others into eugenics field.
On political field, from 1985 onwards debate about care and how to finance it.
Dis movement supported Green Party, but still took years before any law was passed.

1st conference on women against Eugenic and genetic counseling.Widely discussed, many women were strongly against it. Extra vote which was included again.

Another milestone was the first book published by disabled women: "Gender Disabled, Distinguishing Feature: Female".
Real classic. Audience was the movement, to show that the disabled are disabled women and men, different experiences.
First book that dealt from the perspective of disabled women from their perspective. There was a book in 1983, but written by nondisabled woman and dealt largely with statistics. Title suggests that gender is overshadowed by disability. Women were accused of splitting the movement. Women needed something extra.

1986 started widespread discussion on euthanasia, mercy killing. Promoted by doctor bringing cases to the media. Filmed disabled while they were dying. Caused a lot of opposition.

1986 – first CIL established in Germany
Very important issue for dis movement was fight for accessible transport. We had this on stickers, on posters. Bus and trains for everybody.
Big demonstration simultaneously in San Franscisco, Helsinki, and …

Germany had old law on legal guardianship, needed something new and more progressive. Necessity to make legal regs on this issue.
“No new legislation on sterilization” was the appeal. In 1987, we had a “die in”… prominent speaker on assisted suicide.

State government only buys accessible vehicles at this time. In future, this may be threatened under the EEU.

Also in 1987, another discussion: the idea of a cooperative run by disabled people for personal assistance for disabled people.

1988, debate on guardianship and sterilization. European network of disabled women founded.
1989, saw the end of the GDR, widening the discussion, for disabled people in the former GDR. Movement had a bit of a crisis. Reevaluating itself.
1989, Peter Singer invited to talk on right to life of severely disabled children. Broad coalition against it. Under the heading, "Unser Lebensrecht ist Undiskutierbar!" Singer’s speech was cancelled.

Eugenics had a new name, bioethics.
Following the German events he had massive problems in Europe. I think Austria even refused to let him into the country.
He complained, he said his grandparents were killed in Auschwitz, how could he be compared to the Nazis?

1990, dominated by debates on anti discrimination legislation and care debate.
CIL founded their umbrella organization. “Interest group and self determined”
ISL conference, with reps from American movement, on issues of antidiscrimination legislation.

Break

Second half:

1991 was the first time, on the 5th of May, a protest day for antidiscrimination legislation occurs throughout Europe.

1992 the new law of guardianship, with a controversial legislation for people unable to consent, occurred. Also, big coalition founded for the amendment of the preamble of the German Constitution, to include disabled people.

Good occasion to change other things in Constitution. Get disabled people included in the Constitution – the old one, made after the War, had an antidiscrimination preamble which identified groups discriminated against by the Nazis, but omitted disabled people and homosexuals.
Many people feared that disabled people would sue, if it was in the Constitution. The Federal President was pro-dis, and included dis people in the Constitution.

There were people who tried to take the issues to the Constitutional Court (eg parents of kid in special education) and the Court ruled that in principle she had a right to go to a mainstream school, but she still had to go to the special school.

Also in 1994, the Institute for Research and Education on the Independent Living of Disabled People, which publishes most of the books on Disability, looked into how to make women’s shelters accessible, and on the movement on the US. A book is published in 1998, and it evaluates the American situation from a German perspective: Dreamland USA: Between Anti-discrimination and Poverty. This institute has been quite important, organized surveys, and so on.

A question is asked about funding.
There is almost none, only dependent on projects.
EEU, Federal Government, Ministry for Women’s Affairs, It’s always bound to certain projects.
Not a lot of money for research programs in this field.

1994: debate on bioethics convention of the council of Europe. How to use biomedicine and protect human rights of disabled, and weak people in general. Very clandestine document for a long time. Been worked on since 1981. One of the drafts was leaked to the press, and certain parts were controversial, eg tissue transplants on people unable to consent, without their consent. Feared that the European legislation would mean Germany would have to change its legislation. Lots of petitions, etc. In the end, when it was signed, Germany and some other states did not sign, as they had problems with it

1995, care legislation. Wonderful. Much discussion, on what could have been better.

1996: also had European conference for disabled women.

Bioethics Protestors were not completely successful, cause some countries signed that bioethics legislation. But Germany and Austria have not signed it, still.

1998, we had another scandalous court ruling. In a law suit about disabled people emiting animal noises in their gardens, the disabled people were only allowed to go out at certain times. The ruling stayed.

Conference in 1998: Human dignity is inviolable and the starting point of life. The protests led to an alternative ethics institute, the one we visited with Katherine Gruber in Berlin.

Does this institute have the same problems with funding? After 5 years they must be self funding. Canadians have the same problem.

1999 National Council on Disability founded an Advisory organization.Questions were asked: What position would the ISL have in this organization? To whom does it advise? The Government-- the Ombudsmen advises Parliament. We owe him quite a lot. He was the best on offer.He worked very close with disabled people in European year.

In 2000, biggest charity in Germany changed their name and policy. For decades promote “tiny tim” model, and changed, funded a campaign for antidiscrimination, started with campaign to change constitution, but still called “Project Problem Child”, (discussing translation)
Taking action for those children who only caused sorrow for their kin.

Started with funding this campaign, and during this process, they realized their name was not up to date anymore, started a public contest, everyone could propose a new name. Acktion Mensch. Funded the campaign for antidiscrimination legislation, the institute, conferences, project on bioethics on the net. One of their posters was in Hadamar, "what if my child wants perfect parents?" They get most of their money from the lottery.
Their website: www.1000fragen.de Immense amount of money, give hundreds of thousands of euros, very popular, and worried that if they changed the name, they would lose a lot of income. The wording on their logo changed, but the image stayed the same. Formerly, you never dealt with them – they funded institutions. Lot of people said that they did not believe they were really changing. Some people – can a leopard change its spots? Deep mistrust. My view is pragmatic. Try to influence, control what they are doing. Difficult – their internal structures have not changed. They have not funded anything that’s inconsistent with what we would want.

“Developing perspectives for young people” is what they are funding now. Very strange. People grew up with its presence – like Jerry Lewis.
Winners of lottery would be shown on Sunday afternoon. Still on TV, but messages and content have changed.
Rebecca: I am critical, but they are well done. The message is pretty clear. They got these messages from the disability movement.

In the social cultural realm: Hugh Gallagher reported on disability hate crimes. What was the response here?
Was there a translation?
Gerry remembers one specific one, disabled person in wheelchair pushed down a subway.

I wanted to forget it, this was a controversial issue. So called hate crimes against disabled people. Monitoring of it, someone was clubbed in Hanover, some deaf youngsters were attacked, but we never knew if it was interesting for the media, or if there was really more of these incidents at that time. I am pretty sure that people still think the same, do the same

Reb: kind of a youth culture, neonazi groups, one of the targets are disabled people. Main target is foreign people (eg Africans). Attacking, vandalizing kindergarden (special ed) but not sure if people are targeted.One of the targets is homeless people. I would rather not move into a little town in East Germany. Friends…. Moved to Dresden, never lived somewhere where people were so discriminatory towards her. Actual violence, still not sure if it was media hype.

Jewish press has covered synagogues. I was wondering how its being tracked. Presently, not being tracked, Not talked about.

Rosemarie: why would there have been more discrimination against your friend in Dresden?
In early 90s, she was something they had not seen very often, Thalidomide was not sold in the GDR, and the concept of disability in GDR was not as normal as in the West. Very segregated, only special ed schools, no integrated schools. But anyone in East Germany got a job, I am not sure about how accessible the infrastructure was. People lived with family.Interesting: had jobs but not present in the public sphere.

Question: Is the floor (bottom level) for everyone in Europe, is better than in USA, but there is no ceiling… am I wrong?
Answer: For disabled people in Germany, now, the whole situation is deteriorating… jobs problem (leaving the East),
Germany as a whole? Campaign 50,000 jobs for people with dis in Germany, but lot of those who had these jobs were already unemployed 2 years later

What Adrienns referring to – base level in Germany higher than in US, since have access to services and supports?

There are Federal laws, but these change from Bavaria to Hamburg, for provision of low level services, Germany is still better than US. We have a mentality that the state cares for us, and complain if it doesn’t do so, but don’t have the civil rights mentality of the US.

Rebecca: getting a job is really difficult. Getting around, getting access, is really difficult, and only improved in the last 5 years.

David: we met with a disability group in Frankfurt, and they have decent housing, but very few have aspirations, none at University

Germany – all about social services, not education. Aspirations… expectation is that you are going to be a charge of the state forever. If you have an education and you need personal assistance, it’s not worth working.

Question: Discontinuities? How is Ernst Klee’s work viewed?
He has not done much of it lately. He was in the beginning, very crucial, in unearthing the killings. His book is a real classic.
He is doing research on a lot of minority groups.

Walt, question: comparative information… part of the T4 program, coming from State involvement, and one in which we see the US breaking away… how is the relationship with the medical community in Germany now?
Comparisons between mainstream medicine in the US, different fractions/ groups within medicine working with disabled people?

We don’t have stories like this.
Walt: No education? Out reach?
Locally there might be a structure. In Berlin, med students may get some dis awareness training. Las year, started discussion with academy of ethics in medicine, about how can work together to change perception of disability in medical community. Only get hold of those who are open anyway. Demanded for years: compulsory part of med education reflecting on disability. Very difficult, cause the med community is very closed, have their own rules and quasi-laws and I don’t know any disabled doctors who could get into this.Doctors link more with the groups who are focused on one particular disease, but then it is more about research, and not about changing the attitudes of the med staff towards people with disabilities.

Question: What situation in Germany for classification/ different types of disability, cross-disability

Deaf clubs existed well before the dates you have.

We don’t classify.. not explicitly. Dominated by physically and visually impaired people, but not much difference being made. Mental or learning disabilities, still an ongoing process. There has been a German section of People First for 5 years. How far we could cooperate, but basically still visually and physically impaired people.

Rebecca: Deaf “were not disabled”.
Also to get interpreters is expensive, difficult to fund meetings together, but its getting started. There was a lot of separation before.
Locally it is different. In Bremin, We have good relations, they support protest day for antidiscrimination legislation.

Rebecca: hierarchy between people who are more severely and less disabled. More energy to do things, tend to get jobs easier. Lot of complaints, from severely disabled people…getting left out. Dis movement has to focus on how to include the views of everyone, and how to work together.

Comment: Same in US

And in the beginning, it was very male dominated--two men predominated.
Theresia was for a long time the only woman who played a part in the movement, and long time to raise awareness that there was male domination.

Question: Who do we have as leaders? Congenital or noncongenital?
Hard to say, People who have spinal cord injuries- it’s a stereotype – that they lead. We are pretty democratic. We have an age problem. Rebecca is one of our youngsters. Average movement person is between 45 and 55. We are pondering: why?

Reb: similar to feminist movement. Lot of benefits have been developed. Everything seems to have been done.
They don’t identify with philosophy – but on summer schools from 18 to 80, but 18 were few.

Sumi: how differently has the Holocaust shaped the goals of the Dis Movement here, compared to say, France.

We don’t hear much about France. I know about some countries, what kind of legislation, but not about resistance,
The bioethic convention, there was some resistance. Hard to say what the differences in resistance are. I don’t think they have a independent living movement in France.Germany – eugenics always a primary topic here,

Sumi: Aware of that history?

At least those in our age range are aware. But I think it is still a subtext in a lot of disability issues

Rosemarie: I have a follow up question.: differences way euthanasia is understood in Germany and the Netherlands
Neth – understood as a liberal position, but I assume strong anti-euthanasia movement here. But there must be a residue of Eugenic thinking.

Difficult to detect – eugenic – Id like to research people now in their 70s. The Netherlands, they were under German occupation, but… it doesn’t bother them.

I wanted to make a comment about independent living movement in France, and Bruno Gallier, gave a talk on this, his concept of human dignity – he’s the head of a organization for independent living. French attend, but need interpreters – language in English – not involved in any kind of movement, Denmark, Sweden, very good laws on personal assistance, and they are involved in network of European… often has to do with individuals.

David: I think it’s partially the eugenics movement spurred the … Institutions (eg deafmutes) never took weight. The severity of the policies have to be countered with a ..

Popular research on demographics in 19th century. French and Germans argue about national blood lines. Which kinds of disabilities are indigenous to which sorts of countries. In Canada, they change the definitions of disability whenever they want to eliminate a problem at a statistical level
Dutch doctors – refused to record disabled people. Act of resistance. Sociobiology movement spurred by eugenics. Science, Medicine very international. So reminds of need for ties across international dis groups.

In the US, strands of ideology – equal opportunity, right to freedom, you can build on to claim disability rights. Where are the strands of German philosophy that you can attach to?

The Preamble to the Constitution, human dignity is inviolable, equality in the Constitution. That’s something we could build on, but is not often done. Biomedical developments, dispute inviolability of human dignity, and laws that protect human dignity. Should it be more relative? Due to developments in biomedicine? Discussion of inviolability of human dignity and usefulness of it.

I don’t have an answer. But there is no German philosophy that does that. Eg Enlightenment philosophy came out of Germany.Philosophy that supports indep living is important.

Mark: Question about Marxist philosophy

Walt: Very practical philosophy, which can be taken and the floor raised. Extraordinary level that we have nothing of. Similarly in France, from the Revolution.

Reb: hard to say what is German philosophy.

Nancy: Constitutional legislation in Canda since 1985, words are pretty, but actual implementation leaves a lot to be desired. The Government funds the work that is supposed to overturn its policies! They do work, but there is a very individualized result. Hasn’t had more globalised, positive outcomes.

Sally: Ontario act, may “get teeth”, in place, but no way of being enforced. I think that’s modeled after the states. I am not sure how much it has learned from the ADA.

So… we had stopped with 2001.First conference in Germany where disability studies was part.
Working group on disability studies established. Ombudsmen, in cooperation with disabled lawyers, made a bill for anti-discrimination law in Germany.
Two forces, combined, did a lot.

2001, Institute Mensch founded.

2002, The Law on Equal Rights for Disabled People came into force.
Includes acknowledgement of sign language as a language, access of federal buildings, and right to sue federal buildings. “Purpose agreements” – appointed organization of disabled people – meets with organization (eg train company) and they make an agreement (eg in 5 years time, all stations will be accessible). No teeth, based on good will and moral pressure. We could challenge them, but not take legal action. 2 other problems, doesn’t cover private transactions, and doesn’t cover states (eg education, transport). Clear that each state needs equal rights law as well, but not all states have them, and some of them are of “minor” quality, I would say. Does seem to promise rights, but in terms of legal action, its mostly insufficient. Bremen now has state law which is not the worst/best, no possibilities of sanctioning misbehaviour.

For Federal law, duty of ombudsmen to report every 2 years. In the hope that everything will be fine … but thinking of need for sanctions in the future.Need for CIVILIAN antidiscrimination law… eg private restaurants, hotels, busses, planes, insurance companies. There, the Government is stubborn. For long time, made no commitment to this.

But in 2003, European year of people with Disabilities. A lot of the activists from 1981, were involved in creating the actions for the European year in 2003… deciding who gets funding, organizing events, etc

How things change over a couple of years.
In 2003, we had the summer school – Rethinking Disability. I brought some of the stickers.
This was a really big success. We had approx. 500 participants, some of whom stayed for 2 weeks, some only for weekend. Discussed numerous issues.Campaign on deinstitutionalization was launched. March from the institutions, tear down the walls. Accompanying the Berlin marathon, symbol of the long breath we need to get people out of institutions.

A deform, not a reform – health. Ongoing thing.

2004, closing ceremony for European year. Govt still made no commitment in civil anti discrimination law. In May, they promised to get a law, but haven’t yet. They have to, since there is a European rule that they have to… but excluded are people with disabilities and people with different sexual orientations (as in the old Constitution).

From July 1 on, new law on personal budget for personal assistants: now people might have to apply at various levels/ places, but this idea is: one authority that the person has to deal with. The goal is to save money, but this might mean lower wages for assistants, or people getting less support than before. The movement is now wanting to provide counseling for people who will use this scheme. It will be a scheme for the very competent – could result in more people back in institutions who cant manage budget. If this scheme …. Threat of institutionalization
Books.. on summer school, in German, ten euro

Sharon L. Snyder, Ph. D.,
Director, "Legacies of Eugenics" Summer Institute, Einstein Forum
Assistant Professor, Interdisciplinary Ph. D. Program in Disability Studies
Department of Disability and Human Development
University of Illinois at Chicago (MC 626)
1640 W. Roosevelt Rd. #207
Chicago IL 60608-6904 U.S.A.
E-mail: ssnyder@uic.edu Phone: (312) 413-1975 (Voice) Fax: (312) 996-0885