Disability Studies and the Legacies of Eugenics

Anna Waldschmidt, Einstein Forum, July 20, 2004

(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)

David Mitchell:

Welcome. We met Anna at Imperfect Mench conference in 2001, and this is the one thing I remember about the conference with our jet lag. She did a Foucauldian analysis of special education, and one of the most prominent scholars in special ed got up and walked out, and I thought this is someone we’ve gotta know. She is a professor in sociology of disability. She is flying back to teach on Thurs morning.

Anna Waldschmidt:

Thank you very much, very delighted for having been invited to talk and discuss, another group session tomorrow morning, more informally. First I should excuse for my bad English, but if you don’t get it, I will express in German and we have translators.

The title of my talk is Normalcy, Biopolitics and Disability: Some Remarks on the German Disability Discourse. Of course in Germany, genetic engineering and reproductive technologies are very controversial subjects. Widely debated. Advocates emphasize the advances and opponents warn of the abuses – slippery slope.
Advances in the human genome are erasing ethical questions around…
Threatening to undermine our perceptions of the human body, and problematizing centrist concepts of human dignity, etc
Questioning the family as a fundamental biosocial unit. German discourse includes many participants, structures, patterns, institutions
Disabled people have a special weight in discourse in Germany. At first, post WW2, little concern to disabled peoples’ perspectives. Over the last 2 decades, much more interest in disabled people’s discursive strategies.
As reproductive genetics have grown more important in everyday life, more and more opportunities are available for disabled people’s perspectives. One should remember that disabled people tend to be characterized arbitrarily and not a single group. Don’t speak with a single voice. Views on abortion, pre-natal diagnosis, differ from person to person, based on gender, parent status,
In General, disabled Germans more suspect on genetic promises than general population. That’s my opinion, we don’t have any studies carried out on that.
At present, the best way to learn about disabled Germans views is to focus on the published papers where people express their views. I will do that, and focus on what activists from the disability rights movement, but will not examine self help groups for people with chronic diseases – I will just consider some special sources written by disabled people committed to the cross disability rights movement, I will examine the last 20 years. One could do a more historical approach, but as time is limited, I will concentrate on what I would like to call the “discourse pattern”. I will show you my plan, overview of the talk.
My theoretical perspective – draws on Foucault and Link, who developed the concept of “normalism”. In the second part, I will deal with the German bioethics discourse, two central arguments put forward by disability rights advocates – first I will call the historical argument (formulated in the beginning) and then the feminist argument, which developed in the 90s.

Normalcy and society
Until the end of the 80s, or even now, normalcy was often equated with the normative. A person was considered normative if he or she behaved – oriented to behavior oriented norms.
History of language – both normative and normal come from the Latin root. Norma. It could be claimed that linguistic history is of little use in understanding the modern meanings of the terms. The function of the words does seem to have changed. Societies are dynamic, and orient themselves less to penal sanctions. Social norms have receded to the background. Normalcy seems to hold society together in the face of atomization . In the course of the 20th century, statistical normalcy has grown… now, different types of norms. Normative norms and normalistic norms.
Explain the difference between normativity (social rules imposed on people) compared to normalcy (conformity) with other people), A normative norm can be described as a point norm. Normativity is aimed at preventing deviation and protecting society from chaos. On the other hand normalcy, involves comparing people with each other in the light of certain standards. How do I behave in comparison to others? Normalcy in this modern sense involves statistically documented guidelines for individual behaviors. Conformity with other people. Statistical – normal distribution curves. A range norm, a spectrum arranged an average, we are always involved in establishing. Normalistic norms are less static and less oriented to stability, based on change or dynamics. Exist in highly data-oriented society. The normalistic society, which I believe we live in, leads to evaluations after the fact – statistical means.
Central difference: different sequences of norm setting. Normativity, social rule generates conformity
In the case of normalcy, everybody does that, so that is why I am doing it.
Today’s normalization society, no longer uses repressive techniques to discipline us. It is very subtle domination. In line with ideas of autonomy we orient ourselves in line with norms. We don’t want to be located in negative codes.

Why has normalization society been so influential? Able to reinforce … functional power of the normalization …

Back to protonormalism and flexible normalism. Proto normalism – oriented to normativity, strict separation between normal and pathological, permanently ostracize deviance. Occurs wherever homeless, disabled, slower students, etc marginalized.
On the other hand, flexible normalization strategies are more flexible. Begin with an idea of a well mixed distribution of people within the social environment. People reach the social margins by chance. Flexible normalism also separates the normal – but the separation is always temporary. The normal spectrum can be expanded out to the boundaries if necessary.
For example, flex. Normalism allows people with learning disability to be living in the community, similarly with gay people, and allows drug addicts to reintegrate themselves. But one should be cautious when one talks about the differences. Flexible normalism does not eliminate all ostracizing categories. In expanding, outward towards normalcy, any danger that the entire normal area would dissolve would lead to a backlash. One example – debate in this country about extraditing young foreigners who had engaged in criminal acts but had been born in Germany. Normal expectations continue to exist and cannot be crossed without consequences.

Normalistic norms continue in many areas. And of course, normalcy has become the decisive point in special ed, rehab, and other areas. For example, a current …
Campaign going on in this country in 1997, in support of equal rights for people with disabilities. Recognizing disability as a normal mode of life.
Slogans used: First, sport with handicap, totally normal. Second, who is really normal?
Third, in the US, disabled people are a normal part of life, why not here as well?
Another one, do you really think you are normal?
Another one: being mentally disabled is also normal.
If one has a close look at these slogans, one can discover that they contain different concepts of normalcy. At first sight, based on rather contrary conceptions of the normal. Do you think you are normal assumes no one wants to be normal. Emphasizes the joys of eccentricity. On the other hand, the other has a second positive concept of normalcy –assumes people with learning disabilities are unusual, but still normal since that is a desirable thing. They are people like us, and belong in the middle of society. It seems that the campaign did not have any problems in propagating different concepts of the normal. Based on implicit assumptions from flexible normalism.
Rely on assumption that society is free to define normalcy, that no rigid line between disability and normalcy. Boundaries are shifting. Normalcy not permanent, but as a challenge – as a landscape that changes with time, as Ling would call it. Not an external constraint – formed and changed by the active subjects themselves. Campaign used flexible normalism.

Second part of paper – biopolitics part of debate in Germany. Question of normalcy will guide me again. Does flexible normalization play any role in this discourse?
So.. from the late 70s when the German disability rights movement was just emerging, the effects of genetic engineering and reproductive technologies have continued to be important issues. Female activists, and feminist arguments, very important. But did not begin with a feminist perspective, it begin looking back at Nazi eugenics. First argument was a historical argument – developed in a small influential book The Charity Mafia. First published in 1984, by authors themselves, both disabled, and involved in Disability rights movement. Went into several editions. 5th edition published in 1989. Left wing publisher, then.
Seek to identify traditions which human genetics and eugenics have in common. Continuities between racial hygiene and human genetics of today.
Old totalitarian eugenics and liberal ones of today. Close continuity seen in their book. Criticism can be summarized as follows: both eugenics and human genetics are concerned with the same topic- causes of symptoms and diseases. In the past, based on Mendel’s, now based on DNA.
Second point – strong continuity on biographical level. Same generation built up the human genetics programs in Germany. Used former work to justify new work
Third, share principle of selection, to prevent hereditary disease and reduce the number of so called unhealthy genes. Passing on healthy genes to the next generation. In the past, the born people were selected, today it is unborn life that is selected and classified. Both apply quality criteria to human life.
Fourth, both part of population policy – fear that population will be weaker, promote cost/benefit analysis of people who are burdens on welfare, etc. Bans on childbearing, and incentives to have children. Effect different populations. – with and without disabilities.

Udu Sierck – dominated by assumption that some people are biologically inferior.

Old genetics and new ones seen as largely equivalent. Disciplinary technology of science, medicine, industry and the state. Assumed that human genetics is being used to achieve population targets even today. Instrument of coercion, standardizing the deviant.
This repression model was very successful in the discourse. But it was already an anachronism by the time it became successful – democratic society and liberalization had fundamentally changed relationships between the state, society and the individual. Relies on self-determination = human geneticists relying on wishes of clients, actively participation, informed and giving their consent. That means eugenics has developed a democratic approach, not using repression. No longer necessary. People voluntarily adhering to eugenic reasoning. Eugenic practices are invading all aspects of every day life.
Only 70 years ago, eugenics was a crude technique, but we are now witnessing the normalization of eugenics.

I would now like to go on with the second argument, the feminist argument.
Why did genetic testing during pregnancy become routine so quickly? What makes women want to take these invasive diagnostics only to ensure that their embryo or fetus is not disabled. Raised particularly by disabled women involved in feminist movements.
Saw it as an instrument of control over women and their bodies. Not only ableist but antiwoman as well. But… issue of prenatal issues highly connected to controversial issues of abortion. I present you the abortion law in Germany after reunification. Due to reunification, abortion law changed in 1995. Since then, abortion is to be regarded as unlawful but not forbidden. In first 12 weeks, after counseling, women don’t need to provide a reason. No longer financed by national health service. 2 exceptions – if a result of rape, and abortion happens in first 12 weeks of pregnancy; second, genetic conditions – different from normal abortions. No counseling advice needed in case of disabled fetus, no time limits. Allows selected abortions until shortly before birth for disabled fetuses. Liberation movement ignored the issue of genetic selection. In 1992, a book appeared, which proved to be a landmark in the emotional debate. Theresa and Swantje formulated the position of the disabled women’s movement. Do not question women’s right to abortion in general, but do question it on selective grounds.
Arguments – new look at the feminist slogan, the private is the political, There is a fundamental difference between prenatal diagnostics and abortions in the case of unwanted pregnancy.
Main point: the decision for selective abortion is aimed at the d….
Women’s desire to have a nondisabled child is decisive for the decision to terminate the pregnancy. Decision against fetus on disability has a eugenic dimension. Many feminists have eugenic tendencies. Fighting for own rights, but ignoring principles of equality. Normal women demand rights in their interest, but may result in discrimination against other groups of women. If the women’s liberation movement demands the right for a nondisabled child, it calls for a policy against disabled peoples right to life. Self determination is made towards those who are prepared to model their behavior in certain ways.
What kind of society model is used within feminism? DO disabled people have a place in a feminist utopia?
What is needed is a change in feminist utopian thought. Disability and nondisability should be thought of as equal states. Their argument is both for women’s rights to abortion and any supposed rights to nondisabled children, and we also think the concept of self-determination is being used as a social weapon.
This book brought the feminist and the disability rights discourses together.
Until the 1990s, the discourse ignored disabled women, after the book the discourse changed.
A network for critical analysis founded in 1999. However, analysis doesn’t go far enough. In my view. One has to consider the implicit society model. Link social living conditions …
Problematic liberalistic tradition. Can create new barriers for people with disabilities. Use obsolete instruments for their analyses. Post modern society has new power dynamics. It is admitted that eugenics measures are not carried out by the state, but is it really true that female self determination is a weapon? Being used by who? What is the reason behind ableism in the population? It seems to me that instead of searching for agents that are developing weapons against the population, it would be more useful to analyze the discourse, institutional and policy issues that shape decisions. Women voluntarily act in certain ways, seduced by promises of a better life. Very few women have the courage to decide against an abortion and in favor of a disabled child. Fear to be regarded themselves as associated with disability.

My conclusion – complex combination of flexible normalization and rigid normification in Germany. Great effort to increase general acceptance for disabled people, build an inclusive society. Normalization has become central to special ed, rehab. Segregation still exists, in schools, work. Strategies of normalization and normification both exist. Efforts to build both Flexible boundaries and very strict boundaries. This combination is evident in human genetics as well. Human genetics do not use paternalistic … use concepts like “high risk”, based on fluctuation ranges, etc, landscapes which serve as a framework for so called autonomous decisions. They use means, values, and aim to establish objectivity within the counseling process. Flexible normalization, a very effective strategy, is at work. With pre-implemenative diagnostics, this will be even more deeply rooted in the process. Recent moves towards liberalization and normalization in human genetics have not been reflected in the discourse of disability rights activists. We are not living under authoritarian rule. Maybe it’s easier to analyse than talking about biopower, but we have to analyse these recent developments, but the conventional boundaries are about to vanish… for instance, what about those at risk congenitally – are they disabled or normal? The crucial question is what do disability and normalcy mean in the age of genetics?

Questions:

Rebecca: to me this is rather a reevaluation of the norm, so for me it seems as if the norm is still there. Take for example gay people. It is normal in a sense to be gay, it’s not a scandal anymore. It’s still unnormal, but there is no damage to the person and it isn’t hurtful anymore. So the distinction isn’t there. It seems like a doubling.

You didn’t understand the difference between normalcy and normal?

R: for me it is only a sort of reevaluation, a stance that society takes and not actually a change in the actual norm. so it’s still abnormal to be disabled but it may not be as dangerous as 50 years ago.

A: I’m not saying that there’s no distinction between being normal and being deviant. What I think you are talking about is our poles here at the very end. The negative pole and I would agree with that. Of course there is still a negative pole. Often people understand flexible normalization as something without poles. As if the whole landscape has vanished. Of course this is a mistake. I mean that we are in a society which governs us with this symbolic and practical meaning, there are still posts. There is this field of the average, the mean. The normal here in the middle, but of course there is a negative and positive pole. The whole landscape does exist, but what I am saying is that the shift has occurred between these poles. There are still social norms, but they are shifting, developing and I do feel that it makes a difference for disabled people, gay people. To be considered as nonhuman. Nowadays disabled people are allowed to be part of a community. There has been a qualitative shift, but that’s not to say that there isn’t discrimination or stigmatization, but we do need to take into account this shift. We tend at least in disability rights discourse, we tend to discuss or analyze the situation as if there is a big barrier between the normals and the disabled. This is not true any longer. We have to confront ourselves with the broader zones. There is living between borders. We can be normal in some contexts while abnormal in others. This is not a dichotomy that we live in, but it has gotten more complicated and more diverse. Of course our society pays lip service to its tolerance and diversity, but still the negative pole also changes. There is a big shift going on here, concrete policy towards integrating disabled people in the workplace. Integration counseling services have been built up, but the consequence is often that at the negative pole there is still a smaller population that is institutionalized or doesn’t receive anything. One has to decide if one wants to consider the whole picture, or focus on specific sections. You can ignore the poles, but I prefer to consider the whole complicated picture.

Walt: in a way to do what you’re saying. Can you add in the supernormal;? I think about parents I work with in labor and delivery, they are not just concerned about subnormal but also if they will be super normal (go to Harvard, etc). the supernormal can trump the normal. If you are a millionaire and have a disability, the disability often disappears. It’s not just the tyranny of the normal.

A: we are talking about more achievements, more success, more fitness. These are very current developments. The concept of normality, one has to take into account that the whole picture is shifting too. We used to think of normalcy, deviance in ontological terms. That means we know what is normal, want to fix these categories. Like learning categories everyone knows what each diagnosis means. Or a supernormal individual. The categories tend to be essentialized, naturalized as facts. The concepts are analytical, to better understand today. The concept of normalism says that we have to take into account the fact that categories are always shifting. If we pay more attention to the supernormal, of course there is a norm being installed here too. The whole craft and landscape shifts still. Of course this puts more pressure on those regarded as subnormal\.

Adrienen: I was wondering whether the word normal is trying to do way to much work. For example, getting cancer is not desirable but common, so we want to talk about disability as a common part of the condition, a typical part of the human condition, so even if we don’t talk about it as a desirable, it’s still frequent. Normal is too broad. We need new terms. That’s where I think your flexible works in.

A: both meanings have been fused from the very beginning. Both descriptive and normative meanings have always been implied. There is a very subtle relation between those two fields of meaning. We use normalcy in a descriptive way. In medicine or even in sociology, normalcy is used the descriptive meaning, if there is a sufficient mask behind the description, that will lead to the change in the normative meaning. That means like prostitution is of course or used to be regarded as deviant behavior. Used to be until maybe the 60s. and now a days, statistical evidence has shown that a large minority of men go to prostitutes. So many women aim their living in this direction, we have now learned that it is normal. In formal times, couldn’t talk about going to prostitutes, but now it is regarded normal. This may be an example that shows our knowledge about certain phenomena has impression on normal values.

S: I’ve never met a man who’s said yes, I’ve gone.

A: I have.

D: the point you made about the close tethering of prescriptive…leads me to something I might critique in your paper. By splitting off the historical from the feminist approaches, the issue of individualization and desire (feminist approach), it seems to me that the descriptive and evaluative are allowed to pass. Now I can go to genetic counseling , get a percentage. But it seems to me you don’t need the evaluative because it’s imbedded in the descriptive. It’s there without it needing to be specified. The degree to which these two are not the same phenomenon but in that we lose the historical connection, so the historical is always a part of a psychological analysis.

A: of course, there is what Sierck said in the 80s. of course selection is now a part of today’s genetics. Of course there is a continuity, but at the same time if we emphasis this continuity, we miss the modern developments. We should understand the modernity of the new genetics, and this has developed very subtle strategies, using normalistic landscapes in order to make a so called informed decision possible. They don’t need to exert coercion because they have developed other very modern strategies to build up a kind of individualistic context. Of course there’s a whole history where one can take a closer look at autonomy, free choice. It’s a very close link. Very linked to each other, in terms of those who are the activists, or the persons who conceptualize those new concepts, but I think actually, it is of course very important to look into history. But we miss this modernity we are now confronted with and I would like to understand how they do it. How they build up a situation in which a woman feels as if she has the right to choose, but 70 % of women will choose for an abortion.

Brenda: so, can you talk about how also things like class and access to resources (economic and informational) factor in here because these women feel as if they have the right to choose, but I know that not all women aren’t given these options because of resources. Not just about gender and disability, but also about class, and access to information.

A: I think the situations in the US and Germany are very different in this respect. In Germany, an abortion on genetic grounds is financed by national insurance. A great majority of Germans have this coverage (only 5% don’t have health insurance), and even those would be covered under social benefits. Middle class women tend to opt for prenatal diagnosis and abortion much more than lower class women. Lower class women tend to have a less rationalized relationship to child bearing. Having control is a very middle class issue. Resources does play a role, but I think it’s maybe still it may get more relevance in the future, but not like in other questions.

Sumi: can I just follow up on that discussion. Rayna Rapp talks about the anthropology of genetic counseling. She also talks about the fact that lower class conceptions of risk is very different from middle class assumptions. If you tell someone who’s 38 vs. someone who has a family, or if you tell someone from Haiti, when the entire population has that chance in terms of third world status.

A: There’s many complex issues: age, older women opt more for prenatal screening; women who work as opposed to stereotypical images of woman staying home and are more likely to accept disability. There are no studies in Germany about these issues. If a woman is very late in having a pregnancy and if she only plans to have one or two children, then she often opts for a healthy child. Of course there is also the issue of normative values a woman has. Religion plays a role as well.

Two more questions.

Mark: I was really impressed by your talk. Thank you. The question I had was around the question of resistance. Because you seem to be pointing towards limitations in identity politics. Incredibly problematic on the boundaries. If identity politics is not appropriate, what recommendation would you make.

Maybe identity politics would be worthwhile. I don’t mean to write it off, but we must reflect on which identity politic coming from. Need to form coalitions, building networks, trying to work together not only within disability field, women with and without disabilities, working together on these issues. Bringing together academics and counselors. I would like to challenge traditional identity policies, calling for a new identity policies allowing for multiple identities. We have to react to these issues in terms of class, and we have to talk about trying to find coalitions with other “deviant” groups, but also with people who are considered and who do identify as normal. They still have these feelings that there’s something going wrong. I don’t like it. I don’t want my relationship with my children to be voiced in genetic terms. If we apply genetic approach to human reproduction, that means we will change fundamentally in our relationships to our children, but also to ourselves. Now all people are regarded based on these constructions we have made.

Sharon: my soapbox for all of you interested in this topic. There’s so much infusion of choice rhetoric in birth right now. And having had a child, and physicians are interested in possessing these cases, so there are all types of interest in diverse bodies, there’s lots of disincentives to stay. The question first asked of any mother is why didn’t you get x test? Could we make up a test that could of found this out? Was there a test, and why not? The entire dialogue

Testing is a normalistic strategy.

It’s a social and medical discussion that neo-natal medicine is colluding in. Usually its something that are simply accidents at birth. Yes you live with it. The rhetoric of choice is a big delusion. I really want you to unpack more.

Thank you very much.

We’ll stop here.

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