So.
My name is Marsha Saxton.
I'm the moderator of this panel.
I would like to briefly introduce our panel
members.
On my far right, Rosemarie Garland-Thomson
is Professor of English and Women's and Gender
Studies at Emory University.
Everybody hear all right?
>> Yeah.
But Rosemarie [Inaudible].
>> Rosemarie is waiving as she enters dramatically.
Where her fields of study are feminist theory,
American literature, and disability studies.
Her work develops the field of disability
studies and the humanities in women's and
gender studies and seeks to bring an understanding
of disability issues and identities to communities
inside and outside of the Academy.
She is the author of Staring: How We Look,
and several other books.
Her current book project is Habitable Worlds,
Disability Technology and Eugenics.
Troy Duster is Chancellor Professor at the
Warren Institute on Law and Social Policy,
the University of California, Berkeley and
he is past president of the American Sociological
Association.
From '96 to '98 he served as Member and then
Chair of the National Advisory Committee on
Ethical, Legal and Social Issues in the Human
Genome Project.
He is the author of Backdoor to Eugenics.
And Rob is Professor of Philosophy and Educational
Policy Studies at the University of Alberta.
He has been the Director of Philosophy for
Children, Alberta.
There since 2008, a member of the Royal Society
of Canada since 2009, and is the principal
investigator for the five-year project, Living
Archives on Eugenics in Western Canada, 2010
to 2015.
I am Marsha Saxton.
I teach Disability Studies at the University
of California, Berkeley in the Disability
Studies Program.
I am a researcher and curriculum developer
at the World Institute on Disability.
I just want to make a couple of hopefully
provocative introductory comments to our panel
about So What?
I served on the -- with Troy, I served on
the Ethical.
Legal, Social Implications Ethics Committee,
LC, for the Human Genome in the early '90s
and for me, as a person with a disability,
I found it to be an incredibly infuriating
and enlightening experience, an opportunity
to witness covert eugenics in action at the
level of federal science.
Maybe Troy will say a few more things about
that.
I was a child with Spina Bifida, having leg
surgery, actually down the road on 19th Avenue
at Shriners Hospital for crippled children,
the name then.
And medical providers were trying the very
best they could in the era of the '50s and
'60s to help disabled children have good lives
and the eugenic ideology pervaded the treatment
that we were given, the messaging that we
were given, and in a way I identify myself
as a survivor of eugenic ideology.
Metaphorically, I wasn't sterilized, but repeatedly
given messages, for example, when I was 13
and sought information about my own sexuality,
I was told by a physician that, quote, my
vagina worked well enough to please a man,
but I shouldn't have babies that I might produce
someone like myself.
Later as a young adult thinking about pregnancy,
I met up with a physician geneticist who said
-- she looked at me and chatted with me and
my husband and she said, gee, if I had known
Spina Bifidas turned out as good as you, I
would not have recommended selective abortion
as much as I had done.
So, I'm an older woman now and yet from my
disabled students, from people who come to
my workshops, I hear these stories over and
over again in this era.
So, I want us to encompass the personal pain
involved in this topic and if you are like
me, my throat clenches about and I start to
feel like I want to cry and I want to encourage
you to go ahead and cry if you want to because
that's what that feeling means.
You need to.
So, this deep personal pain affects our sense
of worthiness to be alive, our valuing our
children and wanting the best life for them
and this gets mixed up with disability oppression,
with racism, with economic disparities and
confuses our thinking and our sense of self-worth
and value.
So, I'm so happy that this conference has
built in some time for real conversation and
sharing and storytelling and that will help
us clarify our thinking and move forward to
take action beyond the conversations.
Thank you.
Okay, we're going to go in the order on your
program.
Rob.
>> Good.
I'll try and keep these comments fairly brief.
It's really an honor to be here and to be
working with the group that we've formed over
the last six, or six to twelve months, I guess.
Very organized, very passionate, very real.
And, I'm going to make a few brief comments
about the project that I have been involved
in for the last however many years now.
Officially, it's 2010 we started, but the
history for it goes back another six or seven
years, and then just try and make three basic
sorts of points for that as a way to address
this, sort of, question of why does the history
of eugenics matter, which is one of the questions
that is asked in the So What?
panel.
So, the project we're involved in, the living
archives on eugenics in western Canada, was
funded by the Committee University Research
Alliance Program.
CURA is the name, acronym for that program
which no longer exists in Canada.
It's all funded by the social sciences and
Humanities Research Council of Canada and
it was a grant for a million dollars, which
is a lot of money if you're in philosophy
as I am, because it buys a lot of pencils.
And, the idea behind the project -- it was
a kind of -- it had ancestors which weren't
successfully funded and it might be interesting
just to mention again briefly some of those,
one of those in particular was a project that
was larger in scope but applied two and a
half million dollars in funding for a project
called, What Sorts of People Should There
Be?
There were seven of those awarded nationally
in the year that we entered the competition
and we were ranked eighth.
And so we reformulated the project, in some
sense to be a lot less ambitious and more
focused on Canada because I got the feeling
as much as people wanted to promote through
the National Funding Agencies just worldwide
recognized research and incorporate also sweep
them all under the rug, they really wanted
to see stuff on Canada done.
And so that was partly how we kind of narrowed
the focus a little bit more but we didn't
actually do things that differently because
at the heart of the thinking behind the broader
sort of project, What Sorts of People Should
There Be?, was the experience of a number
of us in Alberta in encountering eugenics,
unfortunately, all too close in history for
us there.
And my own sort of personal move into this
was from teaching philosophy of biology when
I would teach a stand a couple of weeks on
the history of eugenics and mainly focused
on, you know, the bad Americans and the bad
Nazis and then realizing, literally mid-stream,
that there were students in my class whose
relatives had been sterilized in Alberta.
And I was just blown away.
I just didn't know what I was doing.
Of course that was Tuesday and then Thursday
was the next class.
So what do you do?
Well, you go back to your department and say
hey, guys, do you know anything about this
history of eugenic sterilization in Alberta?
And the guys say, yeah, actually, you know,
the founding chair of our department was also
the chairman of the eugenics board for most
of its history.
So it gets a little, sort of, deeper and really,
you know, to cut that part of the story a
bit shorter, for me the real hook was starting
to meet through -- you know, I met expert
witnesses in the legal cases, starting with
the Leilani Muir's case that was mentioned
in the presentations in the first panel.
There were a number of people in the law school,
in sociology and other departments around
the university who had been involved in the
cases.
Daniel Kevles was visiting campus and told
me he was an expert witness, the Leilani Muir
case as well.
And, in Alberta there were over 700 cases
that were settled out of court, finally by
the province, but not before they had struggled
for many years to fight against those cases
including introducing a little known piece
of legislation which was pulled from the floor
of the provincial parliament just 24 hours
after it was introduced which tried to basically
invoke what is called the notwithstanding
clause of the Canadian constitution to limit
the payments that would be made to as the
Premiere at the time put it, those people.
^M00:10:08
And, it was kind of a disgusting move on the
government to -- that just added further,
sort of, salt to the wound that had all ready
been laid by that history of sterilization
which again, it was mentioned this morning,
only ended formally in 1972 with the last
change of government that we had in Alberta.
So that's some of the sort of background and
the scope of the project really was a little
bit unformed.
We tend to do things on the fly a little bit.
Our hope initially was to get a hold of a
lot of the legal documentation that was around.
There is roughly 40 linear feet.
If you're an archivist, you know that's a
lot of material, mainly made up of personal
materials and expert witness reports and other
materials gained by legal discovery which
we are not officially allowed to have or know
of.
We can know of its existence, but we can'
tactually look at it.
So of course, officially, we don't.
But we're trying to get that material released
to preserve the historical record and it's
very powerful material, so I'm told, by people
who are allowed to look at these things.
But that looks like that's not going to happen.
What has shifted and what has become more
central to what we've been doing is community
outreach student engagement and collecting
these very powerful survivor testimonies and
survivor narratives.
So you saw a sample from the very brave Glenn
Sinclair this morning and we have a number
of those that we put together in a film.
We had nine that we showed very recently,
10 days ago, and that film now is back in
production.
Can't say reproduction, that might be a bad
pun, and what they do is they blend together.
You know you've got different sorts of narratives.
So you've again seen one example and there
are others of survivors who went through,
lived in places like the provincial training
school but there are others with people pairing
around disabilities.
Nicholas said and by putting these together
and juxtaposing them and using the power of
those personal stories, it really gets people
to think about the broader sorts of context
in which eugenics is operating and that's
the kind of thing that's being carried on
today in a very sort of high level all ready
and I'm sure will continue.
So one point that I want to make here is that
in the history of eugenics these survivor
narratives themselves, whether you construe
them narrowly or broadly, represented an amazingly
powerful, insightful, looks at a past that
is not otherwise very accessible, partly because
of freedom of information and privacy legislation
and I don't know what they call different
things in different places.
In Alberta its Freedom of Information Privacy
which some people say really means, fuck off,
it's private.
Which means that you can't access a lot of
the documents that in some sense you should,
even with the permission of the people whose
files for examples they are, because they
mention other people.
Right?
You can't get access to them.
And so we found that the survivor testimonies
do provide a way into, if you're careful enough,
really providing a bit more of an insight
into some of that path that's inaccessible.
I remember we were at a conference a couple
of years ago which was called the study of
eugenics in Uppsala.
A number of people from the team, from our
team were there.
We're about 25 to 30 people all together,
just two or three at that conference and as
some of you may know, there's also an unfortunately
very rich history of eugenic sterilization
in the Scandinavian states and there was a
fairly thorough looking at this by a number
of historians across the four countries involved
there, including Finland as the fourth.
And it caused a lot, when this stuff came
out in the mid '90s, I think it was, it caused
a lot of furor because of the high rates of
sterilization that were reported especially
in Sweden.
Some of this was very misunderstood.
I won't get into that here, but one of the
people who I have been reading for some years
about this, and I was real pleased to meet
just a talk I was giving on the project said
you know, we've got sterilization survivors
in Sweden because they were, you know, sterilized
until about 1975 I think in Sweden, but we
never thought to talk to them.
I was like, what?
And as a bit of an outsider, I'm not a historian,
I'm not really qualified in any of these areas.
I just saw something to do and that seemed
to be, you know, given that we had a buy-in
from people in the disability community broadly
construed and people who were willing to work
with us, that seemed the natural place to
start and as the project has shaped up over
time, we've seen the real power of these narratives.
So one thing I want to emphasize about them
is not just that they are important to the
sort of collective story that we tell and
to have voices included that otherwise wouldn't
be, but they're also I think a form of empowerment,
this kind of self-narrations that people tell
themselves.
But it's also a double-edged sort of sword
here in many ways.
These are traumatizing stories for people
to tell.
They're not so traumatizing they can't tell
them.
If they're brave enough to come up and tell
them, we shouldn't get too carried away ourselves.
I mean often I've seen some of these stories
being told where everybody in the audience
is weeping, especially me, often, but not
the person telling the story.
And I think that's something to keep in mind
as well.
Right?
There's a way in which it's not that it's
problematic.
I mean you do have to watch out.
I mean you have to be careful.
You're working with people often have these
very traumatic histories of exclusion and
abuse and not being taken seriously as a person,
but you also need to respect that they're
willing to tell their sorts of stories and
I think that's one of the things that's not
been happening in reactions at the, say, my
university's level, who are very reluctant
in some ways to have these stories told because
they are so deeply implicated in the history.
There's a kind of institutional complicity
and frankly a lack of courage, which I find
also very disheartening at times when I think
about it in the bigger picture.
But remember, that concept that I have sort
of introduced to try and understand a little
bit more is the thing that struck me in becoming
friends with a number of survivors and other
members of the broader community here was
this idea of engaged individuality.
You have people who are their own individuals
and they have these idiosyncratic, weird stories
and, you know, there are some strange things
that are a part of Glenn's mix that you would
have seen.
I mean you might -- I mean that's a compliment
for me.
They're strange in the way that -- each of
us is strange in our own different sort of
way.
There's not just one sort of trope here.
And I think that's worth keeping in mind and
I contrast it with the lack of engaged individuality
when I think about the people who are on the
eugenics board, again going back to these
personal connections through my institutional
affiliations because I don't think they had
that real feeling that makes someone truly
human.
They just stamped someone through time after
time on this eugenics board when it was very
clear the information they had in the files
to make these decisions about whether to approve
sterilizations were massively sufficient to
reject the cases and they practically never
did.
Okay?
And again, that's one of the lessons accompanying
the third theme from Alberta.
The other part of this is the continued sub
humanization of people who are thought to
have cognitive disabilities and I was pleased
to hear something that Alex said this morning,
which I guess has been said before but it
was nice to have it up front here, that I
think intellectual, cognitive disability in
some sense is really at the heart of the eugenics
movement in a way in which it's not that race,
ethnicity, gender, after all these different
sorts of dimensions and I think the way in
which the history is sometimes told in the
U.S., race and ethnicity become very, very
prominent, and certainly much more prominent
when you think about policies concerning marriage
restriction or policies concerning immigration.
But when you look at the sterilization legislation,
if you look at all 32 or 33 jurisdictions
in the U.S., I don't think a single one of
them mentions race or ethnicity in terms of
its sterilization legislations.
I've been having a look at that a little bit
more, but what is thorough there, is this
way of dismissing people as people and on
the basis of some kind of intellectual disability,
so feeble mindedness, idiocy, imbecility,
being a moron and so on.
These are all the characterizations you find
in the explicit legislation.
And it's way to keep people out of the story,
out of the collective story that we tell and
one of the ways in which I think that the
individual stories have a real power is by
showing, literally showing, that there are
people in these like subject positions, to
use some fancy term that apparently people
in the humanities and social sciences use
a lot, you know, they've been thought not
to have a subject position.
They couldn't write their own story.
They couldn't tell what it was like.
They can tell what it was like.
And sometimes it's because they didn't have
the intellectual disabilities they were thought
to have, but sometimes it's because they did,
and that itself raises broader questions for
us, I think, as a community in terms of how
we think about what matters to being fully
human.
The last thing I will just say in less than
one minute is that although the sexual sterilization
act of Alberta was repealed in 1972, there
was never what I think the survivors themselves
typically considered to be a proper and full
apology.
There were some expressions of regret and
so on, and my university has never apologized,
never really even acknowledged its own role
and it was deeply involved, not just the founding
chair of my department who was also the longest
serving provost in the university for over
30 years with the chairman of this board,
but they provided surgeons, they provided
other members of the board, the first person
who was actually a geneticist was appointed
the board in 1961 after he had been operating
for 33 years and that was somebody who was
an expert witness in Leilani's case who still
thought that they should be sterilizing people
now, that is 1995.
Okay?
And I think those kinds of connections, institutional
connections, need to be acknowledged and fully
realized in order to move forward.
Thanks.
^M00:19:37
[ Audience Applause ]
^M00:19:42
>> Thank you, Troy Duster.
>> I'd like to begin by asking a question.
Under what conditions does a culture or society
make the determination that its members should
or should not prevent the birth of a child
or later on sterilize certain children?
^M00:20:06
And there are two different models.
One is apublic policy decision and here, the
best example is China, where in the last three
decades it's been a clear policy to have only
one child per family.
But, more subtly, there are cultures in which
there is a social opprobrium around certain
kinds of births and, for example India, and
a lesser extent, China, have long had sex
selection.
So a lot of infanticide in those cultures.
I think that distinction is vital for us,
the distinction between policy of the state
versus the kind of membership, and in some
sense, one level of volunteerism to prevent
certain births.
And I'll come back to my conclusion to say
why that may be relevant to this question
about So What?
Well, the eugenics movement, early 20th century
grew out of a very fertile economic, social,
political soil.
It didn't just happen.
At the end of the 19th century, actually that
40 years in the last part of the 19th century,
this society went through what Polanyi called
the first great transformation and what he
meant by that was, in the early part of the
19th century, we were mainly an agrarian agricultural
rural society.
We had cities.
It was before the industrial revolution.
The last part of the 19th century, we saw
a dramatic increase in industrial factory
development and what this did was to produce
a situation of dramatic rupture from the lives
of people who had ordinarily been and agriculture
or farming, farm to city on the one hand.
Twelve million immigrants from Europe come
into the country in this period, mainly from
rural areas, not from cities.
And they run into factories.
And this great transformation from rural agrarian
to urban industrial really shifted the whole
framework of people's lives and it disrupted
them and produced a lot of poverty and slums.
And in this situation, you found lots of physical
illness, [Pause] mental illness, crime, gangs
and so forth.
So, people were trying to understand the sources
of this shift, the nature and character of
poverty and its implications.
They began to develop theories and one of
the theories had to do with hygiene.
And hygiene and eugenics are twinned, that
late 19th century, early 20th century.
So those who wanted cleanliness thought cleanliness
was also about the gene pool and that convergence
is important for us.
Indeed, as we heard this morning, the progressive
movement contained people who thought in terms
of these two connections that get rid of the
slums, get rid of all this misery, have hygiene
and then hygienics and eugenics were all developed
together.
^M00:23:20
[ Pause ]
^M00:23:26
It was legitimate to therefore sterilize boys
in these particular homes for delinquent boys,
to sterilize poor women in mental institutions
or in foster homes and, of course, most of
you know the decision of 1927, the Supreme
Court ruled that these sterilizations were
indeed legitimate, constitutional.
What you may not know is that Buck v. Bell
is still on the books as precedent.
It's never been overruled.
I want to draw a parallel now between the
first great transformation, late 19th century,
rural agrarian to industrial urban, and late
20th century, an unlikely parallel.
Well, beginning at mid-century, 1950s, 1960s,
America began its second great transformation
from urban industrial to post industrial tertiary
society.
So what's happened -- and also increasingly
suburbanization.
And what this did was to, as in the first
great transformation, disrupt people's lives
dramatically and produce a situation in which
people were suddenly displaced from their
ordinary conditions of factory workers, industrial
development, and the tertiary society.
Currently, I think our situation was about
4% to 5% agrarian, rural, agriculture, about
9% to 10% industrial, and the whole economy
is therefore what's called tertiary sector.
Now this transformation in late 20th century
is a parallel and I think a fertile soil where
we're thinking how do we get around the problem
of a lot of poverty, a lot of crime, a lot
of mental illness, physical illness, and you
start to hear language like this.
There are moochers.
There are takers, as opposed to makers, and
that language is a fertile soil.
We're talking about how to get rid of those
people or minimize their capacity to influence
the rest of us.
So it's an us and them and this great transformation
provides a context in which we begin to see
how thinking about those people can produce
a circumstance in which we do not want any
more of them.
Now, it's a big leap to say we move to something
called sterilization or certainly eugenics
policy, but I do want to make the point here
that this kind of thinking is a fertile soil
for how to think about getting rid of people.
We know, of course, the mass incarceration
figures of the last 20, 30 years, the whole
question about the war on drugs.
In 1954, for example, youth unemployment for
whites and blacks in the age group 17 to 21
was equal.
Let me repeat that.
1954, we had equal unemployment levels for
black and white youth.
Forty years later, unemployment levels for
black youth were four times that for white
youth.
The war on drugs becomes emblematic, a kind
of symbolic representation of this notion
that we're going to find a way to solve the
problem of all this youth unemployment and
it produces employment, of course, for those
who are prison guards and those in the industrial,
quote, the new sector.
So, what happened in the last 20, 30 years,
as industry moved out of the country, it moved
to Mexico or Indonesia or Korea or to the
suburbs or to the south, that displaced the
capacity of urban black and Latino youth to
have jobs.
They become, as they say in England, redundant.
That redundancy produces a situation we're
now seeing of all this massive unemployment
and poverty.
That's the fertile soil.
We're thinking about how to minimize the problem.
^M00:27:34
[ Pause ]
^M00:27:39
Jim Crow, The New Jim Crow, by Michelle Alexander,
the work of Marc Mauer on the Sentencing Project,
all of these talk about the problem.
But what I want to emphasize and I'll conclude
with is the whole idea that certain, quote,
kinds of people, are the kind of people you
don't want to have in your society and that's
the fertile ground for thinking about eugenics.
Now, Marcy said this morning that we need
to rethink the whole notion and not get into
a trap of saying, early 20th century, that
was eugenics and we don't have that any more.
Well, it's true, we don't have anything resembling
state policy, but we should be very mindful
of the fact that as we begin to think about
moochers and takers and what that means in
a society, we have this fertile soil for a
new kind of thinking about how to prevent
people from being born, or if they're born,
finding ways to prevent them from reproducing
themselves.
Thank you.
^M00:28:36
[ Audience Applause ]
^M00:28:43
>> Oh, okay.
Rosemarie is next.
>> Thank you.
I want to -- Is this on?
It's on.
I'm going to stay seated here so I can work
with all my devices in making my presentation
to you here today.
I want to call attention to access, which
is something that we typically don't call
attention to because access should work smoothly
in the background of all of our environmental
spaces.
But what I am doing today is giving you an
example of something I am working to develop
myself and that is a useful way to make accessible
academic presentations and my concept here
is to present multiple formats.
So I'm going to present multiple formats today
in my talk.
That is to say I'm going to be voicing my
talk at the same time that I am going to be
presenting images which are not essential
to the talk, but rather are augmentations
to the talk.
And it requires a little bit of coordination
that I'm hoping I can pull off without it
being distracting here.
So, let me begin with --
^M00:30:12
Okay.
Reminding us of our title here, So What?,
the consequences of misremembering eugenics.
And I'm going to start with a reminder and
that is the reminder that people with disabilities
have always been a part of the human community,
throughout history and across cultures, and
they have always contributed to making culture
and to making the societies in which we have
lived.
So that's an important premise.
I want to talk about three things with you
briefly today.
One is what is sometimes called the old eugenics.
We've been hearing narratives of the old eugenics.
I'm going to recapitulate that a little bit
today and then I'm going to talk to you about
what Daniel Kevles has called the new eugenics,
and to try to explain a little bit about some
of the directions that the new eugenics is
taking, in particular something called neoliberal
eugenics, and then I want to end with what
I think of as a counter-movement to eugenics
that is coming from the disability rights
movement, which is part of the larger civil
rights movement, and it's also coming from
a cultural and academic undertaking that we
think of as interdisciplinary disability study.
So I'll try to tell you more about that later.
So let's start with the concept of the old
eugenics.
I'm going to offer some careful definitions
of the old eugenics that will augment what
others have said about the old eugenics today.
The important thing about the old eugenics,
I think to understand there are many important
things to understand, first of all is that
it is a way of thinking, a logic, an ideology,
and a set of practices that arise out of that
set of logics and ideologies that's actually
quite specific to history.
That is to say that it is characteristic of
a way of thinking and a way cultures have
developed in the 19th, 20th and 21st centuries.
Now one of the things that we think about
what I'm calling the old, or what has been
called the old eugenics, is that it is an
historical period that began in the late 19th
century and that was developed primarily in
the U.S. and in Europe, in particular in Germany,
and that it was a misguided set of policies
and beliefs that developed through the first
part of the 20th century and moved into the
1930s and came abruptly to end.
It had a various point such that we looked
at the Buck v. Bell decision in 1927.
We know that eugenics had a great deal to
do with racism as it was developed, certainly
in Jim Crow in the U.S. and elsewhere that
there was a vibrant time of eugenics, certainly
in the U.S. and worldwide where we had things
that seemed so ridiculous to us today as baby
better contests and fitter families contests
and the other thing we learned about eugenics
is that it was about the distribution of resources
and that eugenics was carried out most fully,
this is our narrative of the old eugenics,
by the Nazi regime in Germany and that disabled
people, along with people from other ethnic
backgrounds such as Jews and Sinti-Roma people
were rounded up by the Germans and there was
a propaganda 
initiative to discredit, people understood,
as useless eaters, people's whose lives were
understood as not worth living and that these
people were institutionalized either in care
facilities, people with disabilities or in
what we think of as concentration camps, and
that eugenics came to an end at the end of
World War II with a recognition of the atrocities,
the mass exterminations, the eugenic euthanasia
and the ethnic euthanasia that we think of
as the holocaust.
So that's something of the narrative of what
is sometimes called the old eugenics.
^M00:35:10
But I want to offer a slightly different understanding
of both the old eugenics and what Kevles has
called the new eugenics by pointing out that
what eugenics is, is that it is modernity,
or our modern era, these last two or three
centuries.
It's a sustained commitment to eliminating
disability from the human condition.
And so in this sense, eugenics is very much,
as a way of thinking and a set of practices,
it's about controlling the future.
In other words, eugenics is the ideology and
the practice of controlling who reproduces,
how they reproduce and what they reproduce
in the interest of controlling the composition
of a particular citizenry.
And I think both of the presentations as well
as the earlier panel this morning reinforced
this concept of eugenics.
So it's not necessarily a limited and misguided
set of historical circumstances from the first
part of the 20th century.
Eugenic logic, I would say, tells us that
our world would be a better place if disability
could be eliminated.
It's a set of practices and policies enacted
worldwide that range from segregation to extermination,
as I have suggested, and the aim of eugenics
is to eliminate disability, as I suggested,
and by extension, disabled people from the
world and from communities.
Eugenic logic, and this is really important,
is a utopian effort to supposedly improve
the social order, and in this sense, eugenic
logic is understood as progressive.
In fact, it takes place worldwide, most vibrantly
in the era that we now -- we historians call
the progressive era.
It's a practical health program.
It's a social justice initiative.
That seems, and this is really important thing,
and seemed, common sense to most people and
it's supported by the logic of the modern
era itself.
In other words, eugenics is a way to control
populations.
It's a way to control people.
It's a way to shape human communities through
technologies.
Okay?
So let me talk a little bit about this new
eugenics that is a part of what I call eugenic
world building.
And eugenic world building is primarily carried
out now through practices that we think of
as genetic screening, prenatal testing, a
whole variety of scientific and medical initiatives
that would shape human communities to make
them conform to the values that those communities
have at the particular historic moment and
time in which those values are held.
Let me give you a specific example of how
the new eugenics is playing out right now.
This is an article, it's a picture of a man
named Alberto Costa who wrote an article in
the New York Times magazine within the last
couple of years about the funding that he
is seeking for research that he is undertaking
that would develop treatments to improve the
quality of life for people with Down Syndrome.
And his article in the New York Times magazine
points out that he is in a losing race for
funding with projects which are funded to
develop earlier, less invasive and more accurate
tests to predict so-called genetic defects
and genetic anomalies such as Down Syndrome
that would identify and mark people being
born into the world that have the characteristics
we think of as Down Syndrome and that is a
set of characteristics that his daughter,
who I am showing here accompanying him in
this photograph, that his daughter has.
And so this aspect of funding is an extremely
important aspect of, and support support and
distribution of resources is an especially
important aspect of the new eugenics.
I'll mention very briefly a strand of the
new eugenics that is sometimes called neoliberal
eugenics.
It's being put forward in the field of bioethics
and medicine.
Here's an example.
It's a book called, Should the Baby Live?
And it is written by Peter Singer and a colleague
who is a bioethicist at Princeton University,
an endowed bioethicist, and he argues here
that, and I quote, we think that some infants
with severe, so-called severe, disabilities
should be killed.
^M00:40:20
And he has maintained this position not as
an outlier position but a very logical kind
of well developed position for neoliberal
eugenics that is widely supported by bioethicists
and within the set of practices, conversations
and values of medicine and bioethics.
And here's a picture of Peter Singer.
I want to wrap up rather quickly by suggesting
that there is a counter argument to neoliberal
eugenics, neoliberal eugenics is a utilitarian
argument about distribution of resources and
about population shaping and I call that argument
the argument for conserving disability.
And I find that argument in lots of places.
One place I find it as a disability studies
scholar is in disability life writing, and
I'll talk just a little bit about that in
my remaining time.
But the other place that we find the argument
for conserving disability is in the built
environment and the set of practices that
come from the larger civil and human disability
rights movement.
That has worked toward using the logic of
civil and human rights in reference to people
with disabilities that has endeavored to make
an initiative which I call an inclusive world
building initiative.
And here's a photograph, for example, of one
of the elements of inclusive world building
and that is universal design and the kinds
of accessible built environments that now
are prevalent in, certainly the United States,
as a result of the legislation that is part
of the entire disability rights movement and
the legislation that has come from that.
Accessible built environments are with us
in many spaces and they are not as apparent
as they are, as they often could be, but they
are responsible for bringing people with disabilities
into the public space, who never would have
been able to be in the public space in the
past.
And they are responsible for an increased
diversity and inclusion in public space that
never existed before.
That is a counter-eugenic move that exists
at the same time that the new eugenics exists
and it is our obligation and political commitment,
I think, as people who are involved in the
knowledge building initiative of disabilities
studies in one way or another, to bring forward
various forms of inclusive world building
and anti-eugenic discourses, let's say.
And let me give you, just in the last couple
of minutes, I have one example of this that
I have been working on a bit myself and that
is, as I mentioned disability life writing.
This is a image of a book cover and an image
of a New York Times magazine cover in which
we have the photograph of Harriet McBryde
Johnson.
She's the author of a piece of disability
life writing, a collection of personal essays
called, Too Late to Die Young, which is a
wonderful title.
She was a disability rights activist and lawyer
who lived in Charleston, South Carolina, and
she debated Peter -- [Duck Quacking] All right,
I'll finish up.
[Audience Laughing] It's my Access feature,
temporal access.
She debated Peter Singer at Princeton University
famously and wrote about this in the New York
Times magazine in the article called, Should
I have Been Killed at Birth?
Very provocative article that I hope everyone
will have an opportunity to take a look at
and to do whatever it is you can do with that.
And she made, basically, the argument that
life with a disability does not make one worse
off, which was the rationale that Peters,
which is the rationale that Peter Singer and
his followers in neoliberal eugenics use to
argue for the eugenic euthanasia and many
forms of people with disabilities.
And she says basically, the presence or absence
of disability doesn't predict quality of life.
This is her argument.
And I'm going to leave this here with that
concept, which is a concept that many of us
working in disability studies are working
toward bringing forward and thank you very
much for this opportunity.
^M00:45:10
[ Audience Applause ]
^M00:45:16
>> Thank you, Rosemary.
We are now going to move into our discussion
groups.
Milton are you going to reintroduce the process?
>> I will.
Yeah.
^M00:45:22
[ Pause ]
^M00:45:28
>> Thank you.
>> So, we should go back to our groups?
>> Yes.
I'm going to encourage the panels to join
the tables if they will.
And, so on your table you will see this case,
it's a green sheet, so we're going to flip
the script a little bit.
We're going to give you a little bit of a
different way of approaching this and so I'm
going to encourage folks to do a little bit
of journaling or writing to capture their
thoughts beforehand.
But the title of the strategy is Save the
Last Word for Me and it's pretty straight
forward.
So after some period of journaling, let's
say this takes two or three minutes or something
like that, you or your table will be numbered
off, you know, do it in a numbered off fashion.
So the way in which it works is that the first
person, person number one, will say, will
read one of the quotes or something that's
come up for them and listen to the panel.
And since we've all heard the same panel,
every other person at the table will respond
briefly, again not a dissertation length response,
but a short response, in terms of what is
provoked by what person number one shared.
And then person number one will share why
they chose that.
Right?
Chose that piece or surface that from the
paneling.
And then person number two will just share
a brief quote.
Three, four, five and six will comment on
it, and then it will come back to person two
and they can share why they chose it and then
you just simply repeat that process.
This one will probably take the longest to
go around, so if you're in a really large
table you might bifurcate the table or create
two groups, but I also would encourage us
to maybe just move the process quickly so
that we can all sort of add our voices to
it and then it will, again, sort of move into
a more of an organic conversation.
And then at some point we'll do the same process
of harvesting these nuggets, returning them
back to the panel and then we'll move the
conversation forward.
If you get lost, you have facilitators at
each table and you also have the green sheets
to serve as a guide.
So what I'm going to encourage you to journal
about is what is something that is thought
provoking that was surfaced in the panel that
you would like to talk about.
I encourage folks, just maybe surface one
or two things, maybe even as many as three.
And our goal is to be done with this part
of the process at 2:05.
Thank you, Emily.
^M00:47:29
[ Indiscernable Background Conversations ]
^M00:47:36
All right, so come on back.
All right, so we're going to go through the
same process and again we're going to harvest
some nuggets from the smaller conversations
that have been taking place at the table.
And I recognize that of all the strategies,
this one is one that is perhaps most challenging
for folks because it really structures the
way in which we speak and listen to each other,
but I also think it really is also about cultivating
certain kinds of competencies.
We are going to build a collective movement
or community of conscious, how to we begin
to be together and hold space together so
I think there's some intentionality behind
that.
So with that said, we're going to take a few
moments to gather some nuggets from the conversation
and Emily will keep me on point in terms of
the time and then we will again return back
to the panel and give them an opportunity
to respond to some of what you've generated.
So, I would love to hear from some folks so
raise your hand if you would like to surface
a question or some distilled nuggets from
your table conversations.
^E00:48:32
^B00:48:35
I'll start over here and then I'll bend it
around.
Thank you.
>> So we were talking about the new eugenics.
Really, does eugenics still exist and a lot
of people might say no, it doesn't anymore,
that was something that came from the past.
But, what we have to be careful for is that
it's just packaged in a different way now,
whether it's through legislation or in the
doctor's office.
It's still out there, but it's got a new face
to it.
>> Great.
Keep your hands high and Montel it.
This case.
^E00:49:13
^B00:49:20
>> I was particularly struck by the quote
that Dr. Garland-Thomson shared with us that
the presence or absence of a disability doesn't
determine quality of life.
And it really dovetails with the current psychological
scientific research.
Study after study shows that people with disabilities
don't report a quality of life that's inferior
to people without disabilities and yet studies
also show that people without disabilities
predict the people with disabilities consistently
are depressed, abuse substances, have a suicidal
ideation and so forth.
In my own research, I found that people with
disabilities were not less happy than lottery
winners [Audience Laughing] and yet that reasoning,
thinking that people have a lower quality
of life is, I think, what undergirds this
idea that it's not a life worth living.
^E00:50:18
^B00:50:23
>> Thank you.
I thought I saw a couple other hands.
^E00:50:24
^B00:50:30
>> Hi.
So what we talked about, what a lot of our
conversations boiled down to was discussion
of choice within culture and how kind of the
new eugenics has taken a form where it's not
individual actors making personal choices
that are all valid because it's my personal
choice, it's my body, it's my kids, it's my
house, versus a system where it's top down
institutions dictating with absolute authority
and how we had some discussions about how
do you challenge that?
How do you say to one person, your personal
choice is wrong, when you are in a discourse
or environment where it's all about the individual
and how do we kind of resist that without
playing into the same individual obsession
with individuality?
^E00:51:17
^B00:51:24
>> We actually had sort of wanted some more
information from Rosemarie, if she wouldn't
mind, of the idea of disability life writing,
sort of more of an explanation of maybe if
it's a new genre and maybe more examples of
what to sort of read and what to look into.
^E00:51:40
^B00:51:49
>> Hi there.
So, in our group, we talked about the talent
of the scientist from, I don't know where
it was from, but her name was Tychi [assumed
spelling], where in Greek, tychie means luck
and especially, it's like, kind of like good
luck.
And, we touched upon, you know, the notion
that, you know, disabilities seen as something
as very negative and recently people starting
to realize that there are so many positive
things that come from disability and maybe
we should touch upon them and break some of
the stereotypes that are out there.
The, oh you're disabled, that means you must
be experiencing negative things.
Yeah.
Thanks.
^E00:52:36
^B00:52:40
>> What really resonated with me is the problem
of people that the thing that keeps recurring
in everything that we've been talking about
today and this gentleman talked about incarceration
of individuals that commit crimes and things
like that and keeping them from reproducing
or keeping these problems from reoccurring
and that got us into a discussion more about
who, what gives the right of certain user
groups to determine, or not user groups, but
certain groups to determine what other groups
are allowed in our society or allowed to participate
in our society and to me it all comes back
down to the innate thinking that we have of
problem solving.
We're always looking at things that go wrong
and how to prevent them from recurring, how
to prevent people from reproducing in our
society instead of looking at what the endgame
is, what the goal is that we actually have,
and how do we create this environment or this
society that is welcoming, that is inviting,
that everyone can be a part of and be whatever
we deem to be successful, you know, be successful
and if we rephrase these questions or this
methodology of thinking into an appreciative
standpoint or strength-based thinking of this
is what I want to achieve, these are what
our goals are and what we want to provide,
we would have completely different results
because the questions that we ask determine
the results that we find.
And we talked a lot about that.
^E00:54:01
^B00:54:04
>> Others?
We've got some more time we can surface a
few more.
Okay.
^E00:54:07
^B00:54:13
>> We had a really rich discussion and only
had time for three of, I think, seven people
around our table to give their initial statements
and then reflect on each of those.
So, the first one was that try to understand
how it is that eugenics believes itself to
be progressive and what does that mean and
what do we make of that?
And the second was a kind of an appreciation
that in this room of the recognition of the
contributions of the disability rights movement
to people who are not necessarily visibly
or are not at this moment disabled and how
the disability rights perspective illuminates
much more than just addressing the conditions
of people with disabilities.
And then the third one was a comment that
although it may be the case that race was
not explicitly mentioned in any of the eugenics
laws that were on the books in the States,
that scientific racism and racism in general,
is such a strong, so strongly connected with
eugenics thinking, that that's something that
we need to take much more into account.
^E00:55:34
^B00:55:39
>> We have probably a chance to field a couple
more.
All right.
^E00:55:41
^B00:55:44
>> At our table, in addition to some of these
issues that have all ready been mentioned,
one of the issues that came up was the greater,
much greater priority in terms of funding
given to research on prediction and prevention
of various kinds of conditions, diseases,
and disabilities, as opposed to research directed
at improving the life of people with disabilities
or with a variety of conditions.
So the prediction and prevention has a much
higher priority in terms of funding.
Another issue that came up was the connection
of hygiene and eugenics and the various metaphorical
meanings of hygiene in relation to racism,
the ideas of purity and so forth.
A third term, this is one of my personal ideas
that really resonated, was the idea of humility.
And this had come up several times in our
discussions.
The kind of humility toward the idea of so-called
perfection and control which were part of
the values of eugenics, both historically
and the new eugenics perhaps of today.
^E00:57:05
^B00:57:08
>> I'm going to bounce here and I'm going
to bounce back.
^E00:57:09
^B00:57:13
>> Hi.
Felecia Kornbluh, University of Vermont.
Something that we talked about that came up
in Rosemarie Garland-Thomson's talk and also
in Troy Duster, was about eugenics and the
struggle for resources and the economic, really
underlining the economic piece of this and
what Troy Duster was saying about discourses
around moochers and makers versus takers,
that was really resonant for me and for some
of the other people here.
^E00:57:44
^B00:57:52
>> We talked about the power of personal narratives
in overcoming the notion of othering people
and I think that's what we talked about round
and round in different ways.
>> Great.
Thank you.
^E00:58:04
^B00:58:09
>> Thank you.
One of the members of our table is a high
school physics teacher and the statement that
resonated for him was inclusive world building
and accessible built environments and so on
from Rosemarie's talk and he has an assignment
where he asks students to design or invent
something.
So it's practical and they came up with a
lot of very interesting solutions to the problems
that they had identified.
So I think that's a wonderful, kind of hands
on way of approaching this issue.
And then we also talked a bit about the efficacy
from Rob Wilson's talk, the efficacy of acknowledgement
and apology.
We'd maybe like to hear a little bit more
about that.
>> Great.
Thank you.
Last one here and then we'll take it back
to the panel.
>> We didn't actually get to discuss this,
but it's something that I would love to bring
into the conversation is I was really struck
by the poster that you showed from the 1920s
defining eugenics using a tree and I'm really
interested in the whole issue of how this
all relates to nature in general and how we
control nature and then the whole issue of
diversity and interdependence.
>> Thank you.
^E00:59:39
^B00:59:42
One last one.
>> Quick question.
Peter Singer is an animal rights activist.
How does that jive with his euthanasia stuff?
>> Great.
That's a good, thought provoking way to end.
So, back to the panel.
>> Thank you.
I think it's my job here.
^M01:00:01
I want to share a point of view about the
community of people with disabilities worldwide.
As veterans and newcomers alike, we get to
feel infuriatingly frustrated at how slow
things seem to have changed and when you look
at the successes of this amazing movement
of people with disabilities, firmly less than
50 years old, having gone from the conditions
that are being described pre-19th and pre-18th
century, not a lot had changed the prior 2,000
years, and in the last 50 years or so, I believe
us to be one of the most successful movements
for liberation in the history of the world.
^M01:00:51
[ Audience Applause ]
^M01:00:57
And we have a long way to go.
So, I think I scribbled down all these amazing,
wonderful points raised.
I think we'd like to start with Rosemarie
addressing some of the issues around quality
of life and some of the points that were raised,
dying to hear more from you.
>> Well, thank you.
I think I'll start with the point that I actually
ended up with and that is that really bringing
forward the inclusion of people with disabilities
and other historically disadvantaged and excluded
groups into the public sphere in lots of different,
in every venue, is the most, I think, important
practice of microliberation if you will.
I just made up that word because people have
been using the word micro aggression a lot
lately, so I want to have microliberation.
At our table we were talking about the cultural
work of the pronouns we and they and us and
them and to follow what Marsha is suggesting
about the work of the larger civil and human
rights movement worldwide and the changes
in legislation and practices and constitution
of human communities that has come out of
that, is really the only -- I think the most
promising way to address social inequality
and social justice worldwide in general and
that, just this room, that Marsha could say,
for example, down the road is the crippled
children's hospital where --
^M01:03:01
>> It's been converted to an assisted living
facility.
>> There you go.
Yeah.
Or this room at a major university that is
filled with a diverse audience, diverse in
many ways.
Is it something that we should not lose track
of that something like what we call disabilities
studies or African American studies or issues,
women and gender studies for example, that
these are part of the institution of knowledge
building and dissemination that has a great
influence on the culture, on policy making
in the culture, on attitudes in the culture.
I don't think we want to underestimate the
sort of microliberatory aspects of those initiatives
because I think we can become very discouraged
and it can seem very overwhelming when we
think of the tide of something like genetic
counseling and these, what we are defining
as eugenic practices and how common that they
are and the authority that comes from them.
Listening to Glenn was very powerful because
it became clear how strong an atmosphere of
authority there was in that institution that
made it difficult, if not impossible, to say
no or to have the perspective that said this
is not right.
And this occurs, I think, to all of us in
our lives as we try to move through as subjects,
that's the term we use, people with multiple
identities and how we navigate the world to
incorporate the perspectives that can say
no, the perspectives that can say this isn't
right, the perspectives to say we ought to
have a different kind of world is really hard
to do when you're inside of that fish tank
that is the institution or the asylum or whatever
institution it is.
So, yeay.
>> Tray.
>> Yeah.
I'd like to respond.
Is this on?
>> Push.
Yeah.
>> Is this on?
Yeah?
>> Yes.
>> Okay.
I'd like to respond to two different questions.
The first was how there's a connection between
eugenics and scientific racism.
Most of us today think of race in terms of
the three or four big ones.
Right?
We think in terms of people of African descent,
Asian decent and European decent.
So that's -- sometimes people include Native
Americans as a fourth.
And that's just a common-sense rendering of
race.
But what historians will tell you is that
in 1905, Slavic race, Jewish race, Irish race,
were common language in the Academy and in
the common sense understanding of people in
the society.
There was something called a Jewish race in
1905.
Now, in that period, 95% of blacks in America
lived in the south.
The south was still agrarian, not industrialized.
And so what was happening with that was as
migration came in from Europe, the racism
in science was about Europeans.
It was not about blacks.
So, that's hard to fathom these days; that
we didn't have an understanding of eugenics
and race back in 1905 because, for the most
part, blacks were not part of this industrial
dramatic transformation that I mentioned.
That occurred only with World War I, the mass
migration beginning out of the south to the
north.
There we begin to see racism take its form.
Now, by the time we move into the late 20th
century, we do have a version of this with
the publication, for example, of the bell
curve and that's subtle because -- and the
bell curve, the argument was, blacks have
an inferior intellectual development.
So, IQ was seen as one of the issues and that
was fairly popular amongst certain people,
certain parts of the population.
So the continuity between eugenics and scientific
racism is there but it takes a more subtle
form than one would expect.
My other comment has to do with the question
at the back of the room about individual decision
making versus state mandated decision making
around policies to prevent births or sterilize.
And the example I love to use is self-selection
in India.
Why?
Because each family wants to think of itself
as individual family, making decisions as
individual.
But in fact, since about 1970 when amniocentesis
and then later on the capacity to use ultrasound
has invaded the Indian population, the birthrate
of males over females has skyrocketed.
And you can't explain that with individual
decision making.
That's the culture telling people, as families,
that they should be having male babies.
So what appears on the surface to be an individual
decision is, upon closer inspection, a cultural
imperative.
I think the same is true for how we think
about prenatal screening.
At my table, we talked about this, how, in
fact, what appears on the surface to be individual
decision making is in fact state mandated
because every state in the union now has some
form of prenatal screening.
You give the information to the perspective
parent and she or he then has to, quote, make
a decision, as individual, but you will find
extraordinary patterns in decision making.
So what appears on the surface to be individual
decision making is, upon closer inspection,
often social and cultural.
>> Yeah.
Do we have another minute?
I would like to address the issue of acknowledgement
and apology and reparations.
It seems like we should include that here.
>> Yeah.
Yeah, I can say something briefly about that.
I was actually just thinking about that right
now, and realizing we are getting close to
being out of time.
And I think that it's -- this might sound
controversial, I guess.
I don't think the apology itself is as important
as the process of engaging in looking at an
apology and the discussions that go around
that.
Because what happens when you force that discussion,
is then people have to raise these questions
of who we are and what's our relationship
to the past.
Why should I apologize for something that
happened two generations ago?
What's my connection to various parts of the
community?
So it's important to go in, sort of, almost
guerilla warfare like, to that debate, I think
not to achieve the apology, per se, though
that can also be an accomplishment, but to
really start to engage people around the very
questions about community membership, about
human diversity variation, social inclusion
and so on.
And it happens almost automatically because
you get these push-backs immediately from
people as soon as those questions about apology
start to come up and you all ready get some
kind of acknowledgement about involvement
as a part of that or acknowledgement of the
history as part of those discussions and that's
what's important about public engagement.
^M01:10:42
