>> We're going to
get Panel 1 started.
My name is Alexandra Stern.
I'm a historian who's written
on the history of eugenics
and the history of
eugenics intersecting
with [inaudible] sexuality,
people with disabilities,
and also I've written on the
history of medical genetics
and issues of social justice.
And I'm really delighted to
be here today, and I'm honored
to be here and to be
moderating this panel
where I'll also be speaking.
This panel is the "what panel."
So eugenics and disability
past and present.
So we'll be delving
into what is it
and what is this
tangled relationship
that we all want to
understand better.
First, I'm going to read
bios of the four presenters,
and then we're going
to see a video with --
starring Glen, who I'll be
introducing in a second,
and then after that, we will
break up into table discussions,
and then come back for
bigger group discussion.
So first, we will
see Glen's video.
Glen Sinclair is a member of
the Living Archives of Eugenics
in Western Canada Team --
you heard a little bit about
that group from Kathy --
and himself a survivor of
the Sexual Sterilization Act
that was in place in Alberta,
Canada, from 1928 to 1972.
During his time at the
Provincial Training School,
Glen would say he was
quiet and desperate --
he was a quiet and
desperate person with no hope.
He felt displaced and as though
he had no purpose in life,
like he wasn't a real person.
Glen had to escape from
the people who ran the PTS.
He was placed on work
placement on a farm,
but learned that they intended
to take him back to the center
because the farmer was not
satisfied with his work,
so he packed a duffel
bag and he ran.
Glen ran, crossing fields,
relying on the kindness
of strangers, staying
in shelters
until he could land on his feet.
Since then, Glen has found
hope, worked, traveled,
and successfully participated
in a class-action lawsuit
against the government
of Alberta that resulted
in financial compensation
for victims of sterilization.
After seeing his
video, I'll speak as --
I already introduced myself,
so you'll hear more
from me in a minute.
I'll just say, this
is my alma mater.
I did my BA here in my
own major I made up,
Central American Studies,
all about social justice
in the 1980s, so I'm
very happy to be back.
Next, our next speaker
will be Marcy Darnovsky.
She's the cofounder of the
Center for Genetics and Society,
and she served as its
executive director
since January of this year.
She speaks and writes widely on
social justice, human rights,
health equity, and
public interest --
and the public interest
implications of human, genetic,
and assisted reproductive
technologies.
And lastly but certainly
not least, we will hear
from Nicola Fairbrother,
and she is the director
of Edmonton's Neighborhood
Bridges
which is a human rights
organization committed
to ending oppression for people
with intellectual disabilities.
So we'll move on with the video.
>> Glen George Sinclair
is my full name.
I live in [inaudible]
Conservatory
in a condo right now.
>> Glen George Sinclair,
sterilization survivor,
is now in his 60s,
balding with glasses,
and flips through the
pages of the file.
>> Well, whatever [inaudible] --
whatever you see here about
the sterilization issue,
anything about what
it says here --
>> Typewritten documents appear.
>> -- about what
happened back then --
>> Yeah.
>> -- is all here.
I was put in the Sisters
of Atonement to begin with.
>> One of them is
marked "confidential."
>> And from there, when I
reached the age of seven,
I was sent to the PTS, the
Provincial Training School.
I felt kind of like I was just
going to be there and live
like -- and live my life with
something like a zombie like,
you know, lock him up,
throw the key away.
>> A photo of the Michener
Centre PTS shows a tiny square
building surrounded by fences.
>> You're commanded to do
things, got yelled at to
"do this," "do that,"
and "you can't do this,"
or "you can't do that."
You felt like you were being
ordered around like a dog,
like an animal in a cage
sort of thing, you know.
You didn't feel --
>> Glen shrugs.
>> -- human at all.
You just feel as if you're
-- as if you exist --
>> A sign on the grass
reads Michener Center.
>> Like you'd feel nothing,
like there's no hope.
>> Did you know you
were sterilized?
>> I thought at the time
-- of course, we all did,
and we didn't ask questions --
>> One of the documents
is headlined,
"Direction of the Eugenics Board
for the Province of Alberta.
>> -- that we were
having our appendix out,
so I didn't really --
you know, being that age,
you never ask these
questions or anything
because the staff would --
would tell you it's none of
your business sort of thing,
you know, and wouldn't
tell you what for,
why you have this operation.
I was marched up to
the green building,
and we had a board three,
something like this,
a table there and a few people
there asking questions about me
and to me of course,
just to see what kind
of person I am and what I'd say.
And I think it was about
five-minute discussion.
>> At the bottom,
the board directs
that Glen Sinclair
be given a vasectomy.
>> And then they sent me home.
I looked into the matter
a little bit, you know,
and found out, yes,
I was sterilized.
But really, I didn't do it --
at the time I didn't
do anything about it.
I really didn't do anything
about it [inaudible] maybe
the issue at the time.
>> Would you have liked
to have had children?
>> I would, yes.
>> Glen nods at a
dark-haired woman sitting
across the table from him.
>> I would like to
just live a normal life
like anybody else, you know.
But now it's been taken
away from me so --
>> He shrugs sadly, then
points at photos in an album.
>> This is pictures of
me at Michener Center.
And, of course, the
main building,
this is where they took you to
ask you all these questions.
And -- those five-minute
sessions they have there before
you got sterilized.
>> One shows firefighters
dowsing it
with water as it burns.
>> Of course, it burnt down.
It was struck by lightning.
It was a godsend.
>> Another shows the word
"clinic" on the front.
>> [Inaudible] You know, this is
where they sent us
to get sterilized.
>> Yet another is also
surrounded by fences.
>> This is the school
where we got our training.
And I went to -- let's see
-- I went as far as level --
I think -- we call them
levels not grades --
but we took every grades.
I went to level 8 as far
as I've gotten in school,
and that's really --
that was about grade 7,
that's when I got --
what I got no further.
That was my education.
This is what some of the
buildings looked like.
Obviously, you can see a fence
right behind that's quite high,
you know, just in case you want
-- you try and want to escape,
you can't because of the fence.
>> A photo shows five
boys standing by the fence
with their faces blurred out.
>> They were very
strict about that.
>> Yeah. What would
happen somebody
if they ran away and got caught?
>> They would put you in a
place what they called the
"quiet room."
And you'd be there
for about a month.
They'd keep you there
for about a month.
And sometimes in
other circumstances,
we would get what they call a
"strap," and hit your bottom
and back, black and
blue with the strap,
and they put 20 lashes
with a strap.
So that's why I was kind of
scared ever to step out of line.
I had to be very careful,
watch my p's and q's.
This is where you went to --
where we went camping again.
We'd stay about a week
out at [inaudible] Lake.
>> A photo shows the young
Glen posing by a sign
that reads the Dr.
Randall R. MacLean Cottage.
>> This was back in my days,
this is what it looked like.
>> Several cabins appeared
nestled among the trees.
>> We slept in bunk
beds, swimming --
went swimming, we went for
walks and stuff like that.
These are the things
they had us doing.
We had a little more freedom
more or less is what I said.
This is a picture of me
back in my farm days.
I was staying at a place
called Willow Hill at the time.
>> Glen, as a young man,
stands beside a cow.
>> You know, there's a little
more freedom there, but,
of course, you had to go and
do your chores and everything
and what you're assigned
to do, I had to go and do.
>> Another photo shows
him milking a cow.
>> I guess that's the
only picture you're going
to see of me milking a cow.
We learned -- learned
things like milking cows,
animal husbandry, and looking
after different things,
wildlife and stuff.
They had what they called
farm classes back then
that they taught you all
these different things
about different kinds of --
different kinds of creameries
and -- it was quite educational,
but it was not for me.
This is me when I was about --
I'd say I was 10 years
old in this picture.
In this one here I think I was
around about 18 or 17 years
of age in this picture.
Who are they to play
God, kind of judges
for what we are, you know.
We all -- we're all
humans on this earth
and we all have our place,
you know, where we say
and what we do, you know.
We have our freedoms so.
In the institution
you're just --
you're nothing, you
feel totally lost.
>> Glen And another man
in his 60s watch video
on a laptop computer
and credits appear.
>> They had a board
there, something like this,
a table there and
a few people there
and asking questions about me --
>> Why do you think you'd
have your appendix out?
>> [Inaudible]
>> But you never asked what for,
what the operation was
really for, you know,
because it was none of your
business to ask the staff.
>> Yeah.
>> You know, mind
your own business.
[ Inaudible ]
>> -- the rules --
>> Yeah, you shut up.
>> If you don't, you get a
beating or whatever you --
[ Inaudible ]
>> Maybe we can probably cut
back on the letter because --
>> He's got some part --
powerful parts in here.
>> Are you happy with what's
in there so far, though?
>> Oh, yeah.
I have no problems about it.
>> Website: Eugenicsarchive.ca.
[ Pause ]
[ Applause ]
>> Please can everyone see me
and not just a disembodied
voice.
The title of my talk
-- my brief remarks --
is Notes on an Entangled and
Troubled History: Eugenics,
Genetics, and Disability.
Degenerate, unfit, defective,
feebleminded, moron, imbecile,
these were the labels
eugenicists helped to create
and use to find certain people
as less than human and unworthy.
Starting in the nineteenth
century,
based on biased typologies of
human evolution and development
that were further infused by
rudimentary theories of heredity
and genetic inheritance, a
new brand of social reformer,
the eugenicist, began
to demarcate boundaries
between normal and abnormal,
desirable and undesirable.
Eugenicists exhibited
many anxieties
about industrialization,
urbanization, and immigration,
and changed more
generally in modern society.
As at the time, modern cutting
edge professionals and thinkers,
eugenicists sought to
apply scientific solutions
to what they perceived to
be serious social problems.
By applying theories of
hereditary, often extrapolated
from animal and plant
breeding, eugenicists sought
to contain spatially and
prospectively the unfit
and encourage and
expand the fit.
This resulted in a spectrum
of eugenic policies, laws,
and ideas that moved on the one
side from what's often called
"more positive eugenics" --
and I'll put those
in scare quotes --
may urge incentives and
better baby contests,
to more restrictive efforts
such as prenuptial certificates
dictating who could marry whom,
and finally, to the
other side, what's known
as negative eugenics
with coercive programs
such as eugenic sterilization
and state-sponsored euthanasia.
In the United States, as in
many countries around the globe,
eugenics undergirded the
passage of marriage laws,
eugenic sterilization laws,
and immigration restriction,
and was one of several
far-reaching forms
of social control that
discriminated against
and hurt primarily poor people,
young people, people of color,
and people disabilities.
Thirty-two U.S. states passed
eugenic sterilization laws,
which at least 60,000 -- with at
least 60,000 officially recorded
sterilizations performed
on vulnerable people
from 1907 to the 1970s.
In addition, in Canada, Alberta,
and British Columbia passed
sterilization programs.
20,000 of the sterilizations
in the United States occurred
in California, in
about ten institutions,
at the time divided
between "feebleminded homes
and insane asylums" --
in scare quotes again.
Many more people judged
unfit, including states
without sterilization laws,
were segregated from society
through institutionalization,
often long-term and often
in overcrowded facilities
where neglect
and unethical medical treatment
all too often were the rule
and not the exception.
Eugenicists were
instrumental to the construction
of the medical model of
disability in which cognitive,
physical, or psychiatric
difference was something
to be diagnosed, managed,
controlled, and prevented.
A human being with her
or his constellation
of life experiences,
bodily abilities and limits,
was reduced to a label.
In the case of eugenic
sterilization
in the United States, historical
records for many states indicate
that very often people,
especially young people
under about 25 and as young as
7, who transgressed social norms
by participating in
non-normative sexual behavior
or gender appearance, by
skipping school, stealing food,
or committing petty
crimes were targeted.
In a forthcoming article that
I did with Nathalie Lira,
who's here facilitating
one of the tables,
we show that Spanish
surname patients
in California State
institutions were sterilized
at elevated rates, in the 20
to 25 percent range in places
such as Pacific Colony.
Thus, there was racial bias
in California, most markedly
against people of
Mexican origin.
Everyone who was sterilized
though, whatever their racial,
ethnic, or class background,
was painted with the
brush of disability.
In looking back at the twentieth
century era of state eugenics
with the hindsight of today,
it can be morally satisfying
and very easy to condemn
policies such as sterilization
or long-term
institutionalization
and think we're smarter
and more enlightened today.
And, of course, we
should recognize
that such abuses occurred,
and they are interwoven
into the fabric
of twentieth-century modern
history, whether in the U.S.,
in Australia, or, of
course, in Germany.
Furthermore, sterilization
abuse continues in this country
and other countries, and
many of you are aware
of the revelations, about
150 women were sterilized
in authorized procedures
in two California
prisons from 2006 to 2010.
Sterilizations have also been
reported in Peru, Uzbekistan,
and a variety of
other countries.
Yet frustratingly, the
recognition of the wrongness
of eugenics has not necessarily
been understood in scholarship
or popular media in terms
of the lives, experiences,
and futures of people
with disabilities.
Rather, in many cases,
people with disabilities
have been the unnamed foil
against which eugenic
sterilization has been seen
as misguided.
Let me explain.
One of the most well-known
stories of eugenics
in the United States is
the Carrie Buck story.
Carrie, her mother, and
daughter were institutionalized
at the Lynchburg Colony
in Virginia and sterilized
under that state's
law in the 1920s.
The case bearing Carrie's
surname, Buck versus Bell,
tested the constitutionality
of that law and was heard
by the U.S. Supreme
Court in 1927.
It served as the basis for Chief
Justice Oliver Wendell Holmes
infamous declaration,
"Three generations
of imbeciles are enough."
Holmes upheld the
constitutionality
of sterilization based
on the right of the State
over individual rights to
protect the public health.
Using the analogy of
compulsory smallpox vaccination,
Holmes argued that the
State also had the duty
to cut the fallopian tubes,
thus protecting public
health from bad heredity.
In one of his insightful
essays on the misguided uses
of science, Stephen Jay Gould
was the first to demonstrate
that Carrie Buck
was not retarded.
In fact, Carrie had
done well in school,
and her daughter was normal
according to all mental
and physical indicators.
Her crime was being the
victim of an incestuous rape
for which she was labeled
promiscuous and feebleminded.
Carrie Buck, her mother, and
daughter were terribly wronged
by Virginia's sterilization law
and the zealous eugenicists
who upheld it.
And this story is
an important one.
However, the problem
with eugenic sterilization was
not just that people mislabeled
as defective or disabled
were victimized,
although this certainly
occurred, but that people
with intellectual disabilities
were the foremost targets
of coercive eugenic practices.
Their stories are forgotten
because they left few
written traces of their lives
and often have no children
to recount the past.
In some instances, there was
legal or political action.
With a class-action
lawsuit in Alberta that's --
in Alberta, or the
Advocacy of Mental Health
and Disability Groups in
Oregon, about a little less
than 10 years ago, that
successfully demand an apology
for eugenic sterilization.
Moreover, often parents
of children
with disabilities following the
mantra of "doctor knows best"
and the paternalistic compassion
of the pro-institutionalization
argument,
believed they were doing
the best they could
for their children
who wouldn't fit in
and perhaps had many special
and time-consuming needs.
So I contend that we need to
put people with disabilities
at the center of the history
of eugenics, not to turn them
into victims, but to
recover their experiences
and their dignity,
and to understand
with much greater
clarity how eugenics
and specifically eugenic
sterilization helped to create
and entrench the medical
model of disability.
I suspect that digging into this
history as the team I'm working
with on qualitative --
on a qualitative and
quantitative analysis
of 15,000 sterilization
authorizations --
authorization forms
in California will reveal this
history, and also, I suspect,
will reveal many hidden
acts of resistance.
We already know that
the National Association
for Retarded Children played
a key role in the modification
of California's Eugenic
Sterilization Law 1953 which led
to a decrease, although not an
end, to reproductive surgeries
in state institutions.
Despite great strides
in disability rights law
and advocacy, the medical
model remains intact.
It is exceedingly resilient
because it fulfills
many functions
for many different
kinds of people.
The impulse to attain what is
normal and healthy as juxtaposed
to what is abnormal, different,
defective, or disfigured,
even if the boundaries
between these definitions are
historically contingent,
is unwavering
and often unquestioned.
The medical model was a
cornerstone to the development
of prenatal testing, which
became routinized in the 1980s.
The rationale for
testing fetuses
for intellectual disabilities
through amniocentesis
or cryonic villus sampling, most
notably Trisomy 21 associated
with Down Syndrome, was largely
one of disease prevention
with corollaries of
cost effectiveness
and eugenic betterment.
Thus for people with
intellectual disabilities,
eugenics started in
the twentieth century
but it didn't stop in the
1950s after World War II.
Sterilizations and institutional
segregation, and, in some cases,
medical experimentation,
continued.
Nor in the 1970s with
the promising advent
of rights movements in
bioethics, because it was then
that prenatal testing took off,
following the laudable track
of reproductive autonomy,
but not the track of
disability rights.
Today, the prevention of
medical models are integral
to the commercial rollout of
new noninvasive prenatal tests
that generally can be performed
in the first trimester.
But at the same time, the
landscape of genetics ethics
and social justice has changed
since the coercive
state practices
of the twentieth century
and from the earlier
and the earlier amnio
era of the 1970s --
from the 1970s to the 1990s.
Disability rights, for
example, in terms of access
and accommodation and awareness
has expanded significantly
in the past few decades.
Thus I see cause for both
concern but also for hope.
Notably, a small hopefully
growing minority of geneticists
and genetic counselors have been
embracing and promoting and,
in some cases, demanding
as loudly as they can,
a social model of disability.
Several genetic counselors
have launched programs
that emphasize the joys
and challenges of the lives
of people with disabilities.
In these programs, students
are matched with families,
learn about the psychological
and medical models of --
psychological and medical
needs of children and adults
with particular genetic
conditions.
Others are creating resources
that are disability friendly
in terms of messaging and
imaging which is very important,
often working in concert with
groups such as the National
Down Syndrome Society.
But these genetic counselors are
swimming against a strong tide
of commercialized interests
who want to sell their products
to a huge market, all
women of childbearing age.
And, of course, as a component
of prenatal healthcare,
standard of care
prenatal testing is
and should be an option for
all women of all backgrounds
and socioeconomic
statuses who want it.
So the rub is how to strongly
support reproductive autonomy
and disability rights.
I hope today we can engage
collectively about how
to move towards a society
in which disability
of quality is valued, is
visible, and is the status quo,
and reproductive and
genetic decision-making occur
in this context.
Thank you.
[ Applause ]
>> Marcy.
>> I'm going to go
a little off script.
I want to start by thanking
everybody for coming.
And I want to let you know,
many of you do already,
that we had such an amazing
response when we started putting
out the word about
this conference,
that we reached the capacity
of this room five weeks before
today, and that was really
with kind of minimal publicity.
And so I think that, you know,
those of us who are here,
and many others who aren't
able to be here today,
are really eager, really
hungry to explore these issues,
and they're -- you know,
they're challenging issues,
they're tough issues, but I
think that there's something --
and I don't know what it
is about the timing now
that really is an opening for
these kinds of conversations,
so I'm really, really
excited about being here
and that all of you are here.
And I also wanted just
to take a minute to say
that the organizing committee
that put this together
that was mentioned before is
a really spectacular group
of people, and it was such
an honor to work with them,
and that this effort also
has grown out of a couple
of other pieces of work
that most of the people
on this organizing
committee did,
and also mention there's
a couple other people
in the room -- Miros
Chavez-Garcia,
and Troy Duster I know
is going to be here later
if he's not here yet -- who
together organized an event
at UC Berkeley Law the summer
before last summer exploring the
legacy of eugenics in
California, which is something
that Alex has --
where did she go?
-- has written about in
a really important book.
And I wanted to let you
know also that the Center
for Genetics and Society, which
is where I work, we do a series
of webinars that we call
"talking biopolitics,"
and there's one coming up with
Alex Stern and Corey Johnson,
a reporter with the Center
for Investigative Reporting
who wrote an expose this
summer about the prison --
unauthorized sterilizations
in California prison
that Alex mentioned.
So that's on November 14 and
there's a flyer in the lobby
about that, and I invite you
all to participate in that.
So let's see.
I wanted to start today
by just a few words
about how I came
to these issues.
And I actually started first
working on the social challenges
and the ethical challenges
associated
with human biotechnologies.
And I did this because
I learned of a campaign
by a few influential scientists
and bioethicists and others
to use these powerful -- these
powerful new technologies
to actually literally try
to breed better babies.
And I was shocked by
this and very dismayed,
and started the work that became
-- that along with other people,
Richard Hayes who had
hoped to be here today --
resulted in the Center
for Genetics and Society.
And I think the reason for
me that this new eugenics,
this new high tech eugenics was
so shocking, was because I grew
up in the 1960s at a time when
American Jews were just starting
to grapple with what had
happened in the Holocaust,
and even in our Jewish
community,
there had been this silence
for many years about it.
So as a child, I
learned about that.
But as an adult, when I started
doing this work, I did not know
that people with disabilities
were the first targets
of the Nazis.
That was something I learned
in the course of this work.
I knew a little bit
about the U.S.
and British eugenics movements,
about eugenics movements
in other parts of the
world, but if I had --
when I started this work some 15
years ago, if I had, you know,
seen Glen's video and
heard Glen's story
and heard Alex's remarks at that
time, I would've been shocked.
I would've learned, you
know -- I'm learning still,
and I would've been, at
that, time really shocked.
And just a few years before
I started this work, I had --
I had a baby, and because I was
older than 35, I was kind of,
you know, put on the assembly
line to have an amniocentesis,
and my doctor told me
do it, so I did it.
I didn't ask any questions.
I didn't think it through.
So, you know, in
these last 15 years,
I've really learned a lot, and
I've learned a lot including
from people that we're going
to be hearing from today
and other people in this
room, and I just, you know --
-I am, you know, kind of amazed
really, but also really grateful
that there's so many people, all
of you, who are more thoughtful
about disability eugenics
and brave new worlds
than I was well into
my adult life.
So -- okay.
So Alex ended her
remarks talking
about these new prenatal genetic
tests, and I want to talk
to you a little bit about that.
Let's see.
I want to eat up a little bit.
I want to start by
pointing out that, you know,
when amniocentesis
was introduced,
Alex and I were talking
about this yesterday,
that this was before the
disability rights movement
as we know it today
really existed.
The disability rights
movement --
Americans with Disabilities Act
was 1990, amnio was introduced
in the '70s and the '80s.
But by the '90s, mid,
late '90s, early 2000's,
there really was a
very robust critique
from a disability
rights point of view
of prenatal genetic testing.
And Adrienne Asch is a name
often associated with it,
and Marsha Saxton who's
here with us today.
She wrote an article
in the 2005 edition
of "Our Bodies Ourselves,"
and she noted something
that really struck me
as quite interesting,
which is that people around the
world, people with disabilities
around the world, had
a very similar response
to prenatal genetic testing,
and the response was
along the lines of,
these prenatal technologies
send the message
that your birth was a
mistake, your family
and the world would be
better off without you alive.
So, you know, that's something
pretty hard to grapple with.
Now, here we are in 2013,
and we're on the cusp
of a technological
revolution that is going
to have the potential
of greatly,
greatly expanding
prenatal genetic testing.
And what this new
technology does is,
it takes a ordinary blood
draw from a pregnant woman,
and from that blood, can
isolate and analyze fetal DNA,
and this is at 9 or
10 weeks of pregnancy.
So, you know, before
you've told a lot of people,
maybe before you've told your
mother or your best friend,
that you're going
to be able to find
out all this information
about your fetus.
Now, right now the companies
that -- the tests for --
the prenatal genetic tests
of this type that are
on the market, they're being
marketed by four companies
in the United States,
and they are often called
"noninvasive prenatal tests,"
and I'm going to use an NIPTs,
which is often you'll
see in the literature.
It's being taken up faster
than any other prenatal
technology has ever been
taken up.
And unlike amnio,
which is invasive
and which does present some
risk of causing a miscarriage,
there's -- it's not
risky at all.
It's not invasive.
It's a blood draw.
It's cheap.
So amniocentesis, about 100,000
women or so a year undergo it,
and people are saying that
these new tests, these NIPTs,
it might be -- it might
go up, you know, 30-fold;
it might go up to two
million, three million women
who take one of these tests.
So, you know, the first thing
is that this is pretty likely
to reduce the number of people
with Down Syndrome in the world,
and it certainly
does have a potential
to reinforce the assumption
that Down Syndrome is a dread
disease to be prevented.
And I think these tests
also have the potential
of really dramatically
transforming
for all women what it
means to be pregnant,
what is their experience
of early pregnancy.
So it's really something
to contend with.
And there has been push-back.
At this point there are a number
of very prestigious
medical organizations
that have issued statements
saying, we should be cautious,
we should go slow, this
should not be a routine part
of prenatal care, and
that's something different
from the previous experiences
of prenatal genetic testing.
But there's a problem.
And the problem is that
they're meeting this incredible
commercial force and,
you know, there's a lot
of money to be made here.
These have to be -- you know,
one way to evaluate these
noninvasive prenatal tests is
that they are products and
they're a kind of a product
that is a very coveted kind
of product, it's a product
that has an entirely
new consumer base
that didn't exist before.
So that's the commercial
force that's against us.
And then, the way these tests
are been marketed is something
that we really need to look at.
And I just want to share
real quickly a little bit
of what the wonderful
writer George Estreich,
who's also here today, has
written about these tests.
He wrote a series of articles
for the Center for Genetics
and Society blog, Biopolitical
Times, I'm happy to say,
and he really writes about
how these companies have
unbelievably managed to harness
the rhetoric of health, choice,
and information in order
to sell these tests.
So I really recommend
those to you.
Okay. These tests right
now count chromosomes;
so they give certain
number of results
about different syndromes.
On the horizon are
genetic tests that do more
than count chromosomes.
In fact, there have been
papers showing the --
in scientific literature
showing that we're, pretty soon,
going to have available tests
that can give you a complete
genetic readout of your fetus
at 9 or 10 weeks
pregnancy, and the results
that come back are going to be
like the results you'd get
right now if you took a little
of your spit and sent it with
a few hundred dollars to one
of these directed consumer
gene testing companies.
They'll tell you risk
probabilities for dozens
or hundreds of conditions
and traits.
And what the heck are
people going to do
with that information?
And what does it mean about
how we think about our children
and how we think about
what it means to be human?
And are we going to start using
those, not just even healthy --
to get healthy babies,
whatever we -- any of us --
any of us might mean by
that -- but better babies.
And those questions
about, you know,
the baby that's not just healthy
but prettier, more musical,
more athletic, smarter;
those questions
about human enhancement
are also now, you know,
staring us in the face.
And we're going to be --
have the great good fortune
of having an extended look
at those questions in
the film that's going
to be screened tonight, a
documentary called "Fixed:
The Science Fiction
of Human Enhancement.
[Buzzing] That's my timer
saying I'm up so I'm going
to take 30 more seconds.
I think, you know,
the disability rights
movement has -- has --
is really takes credit --
should take credit for putting
on the social agenda
the question
of how we collectively
understand what does it mean
to be healthy, who
counts as normal.
And even though not everyone in
the world has felt, you know,
moved to really grapple
with that challenge to date,
I think we're in a --
at a moment right now where
those questions about --
those questions and questions
about eugenics are really
going to be unavoidable.
So I think we should take it as
an opportunity to really think
about how we want
to -- how we --
the greater "we" in this room --
want to facilitate those
conversations in a way
that takes account all the
tangled things that we're going
to be grappling with today.
Thank you.
[ Applause ]
>> Good morning.
> Morning.
>> I have a terrible
cold so I'm going to try
to (a) keep my distance, and
(b) not cough all over you
and through this
presentation, so bear with me
if you will indulge me.
I'm going to steal a
little bit actually from you
in terms of your presentation.
I thought it was really powerful
when you talked about why,
how you came to be
interested in this type
of work or these topics.
I think maybe it might be
useful to talk a little bit
about how I came to be in the
work that I am in as well.
As Alex mentioned, I'm the
director of an organization
in Alberta called
Neighborhood Bridges.
We're an organization that
does a whole bunch of stuff all
at once in an effort
to make a community
where we'd all like to live.
Neighborhood Bridges believes
very strongly that the creation
of the mythos of disability,
that kind of labeling,
has created a society
that is not fully whole
because we don't really
embrace the idea that the nature
of any birth and any
personhood is equally valuable.
And I think for folks
in our community,
we all have those kind
of watershed moments
that we talk about.
For me, I was 18 years old.
I had recently emigrated to
Canada from South Africa,
and I grew up in South Africa
during the heart of apartheid.
You know, and I think that
in North America at the time
that we -- when we came to
Canada and North America,
there was this really strong
feeling that apartheid was sort
of an offensive condition
with which to live,
and I would agree with you.
We moved to Canada, and
the notion of apartheid
and the legislation and
policy that led to apartheid
in Canada was built on the
reservation system that was set
up in Canada, which is not
actually commonly taught
in the same way that eugenics
is not commonly understood;
I won't speak for the U.S.
but certainly in Canada.
And at 18 years of age
as a university student,
I took a trip to the
Provincial Training School.
And that was where,
Glen, you grew up, right?
It's name had been changed
to something more benevolent
at that time; it was
called Michener Centre.
And I remember distinctly
walking
into one of the villas there.
The buildings were called
"villas," like it was sort
of like a holiday
establishment or a nice resort.
And the villas were all
set up the same way.
And when Glen talks
about the quiet rooms,
what would happen is if
you are bad, you would go
to the quiet room in
one of the other villas,
and you would go -- somebody
like Glen or Leilani Muir,
who some of you may have heard
of because she spearheaded one
of the first lawsuits against
the provincial government
in Alberta -- if you were bad
-- these are the scare quotes?
--
>> Uh-huh.
>> -- if you were bad,
you went to a quiet room,
and you were put to
work on the units.
And we walked into one of
the villas, in Ash Villa,
and there was a naked
woman on the floor
in the middle of
the common area.
There was a group of staff, they
used to a lab coats in 1988,
standing in the corner, and
the common area was set up sort
of a room much like this
but with concrete floors
because they're easier to clean
was what the staff told us.
And there was a ring of chairs
around the perimeter of the room
where people were rocking back
and forth, yelling, screaming.
There was one corner
where people were dancing
to a ghetto blaster.
But this young woman was on
the floor and she was naked.
She was by a wheelchair.
And as we came walking in --
I guess they hadn't been
anticipating the tour because at
that time it was also considered
quite common that you could tour
through what were identified
as people's homes --
and one of the staff
grabbed a sheet and came over
and covered this
woman with a sheet.
And then the woman started
-- she had cerebral palsy,
she was very agitated, and
he covered her face as well,
and by my viewing, you know,
she looked more agitated
and more distressed,
and it struck me
that that floor was probably
pretty darn cold actually.
And when I asked this
guy who was in charge --
and here I was, like this
young university student.
And I had come from South Africa
to Canada because it was, like,
way more progressive and our
family was politically active
in South Africa, and we had like
24-hour police surveillance,
so we were here to go somewhere
safer, and so I just sort
of collected myself to
the idea that, like,
maybe Canada wasn't
entirely without sin,
and there I was looking at
this woman on the floor,
and I said to this
guy in the lab coat --
so it clearly indicated,
like, who was in charge
and it wasn't me or the
lady on the floor --
you know, like, "I think
she's not liking that."
And his response was,
"Well, she shimmers her way
out of the chair, and
this is her consequence."
So when people say,
"Well, why do you do this?"
And I'm like, "Because I'm
really mad, like, all the time,"
[ chuckling ]
and it was this early
life of crime so we went
with activism more so.
So when I started Neighborhood
Bridges, the notion was
that we wanted to
look to philosophers
like Jurgen Habermas, the
folks who sorted of talked
about democracy in a way that
meant that when we talked
about democracy, what
we're really saying is
that everybody has resource,
opportunity, and knowledge
with which to participate.
And so our involvement in the
living archives project, for me,
it resonates at a very personal
level, and one of my key roles
in the project is to
take survivor testimony.
And for me, that's
also really important
because I don't know
how to tell the story.
I think the people
who've survived --
and we in the project define
survivors more broadly
than just people who
have been sterilized.
We think new forms of eugenics
are much more pernicious
in some ways.
But to bring you back to sort
of why we thought it's important
to tell the stories,
and you noted
when Glen was telling his
story through the credits,
what we've done is to
try to build community
around the process of
taking survivor testimony.
So survivors and interview
participants watch --
watched first edits and help us
edit the films and choose music
for the films and build
the films with us.
And the film's not
done until the person
in the video says it's done.
And we've reconnected
a lot of people
who would have otherwise
lost contact or never met
through the process
of making these films
so that they can have
that shared experience.
One of the hard things
about social movements
is often there's sort
of watershed moments for the
disability rights movement
and for this sort of, like,
survival of eugenics movement,
if we want to call it that.
That moment is really
hard to find.
There's not -- there's not,
you know, that sort of like --
there's not a bus strike or the
shooting of Martin Luther King,
like those moments that really
galvanize people into action,
because more broadly
I think in our world,
we still don't see disability
as being discreet in culture
and distinct and that sort
of shared experience of both,
you know, success but also
significantly oppression, right,
which leads us to the
idea that eugenics
and the Sexual Sterilization Act
in Alberta was a
normative thing.
The Sexual Sterilization
Act in Alberta was
in place from 1928 to 1972.
It's one of, if not the
longest standing piece
of legislation relative
to sexual sterilization.
It was very heavily entrenched.
The Premier of our
province housed his son
at the Provincial
Training School.
The suffragette movement,
particularly Emily Murphy,
who's a very famous
female politician
and women's rights advocate
in Alberta, strongly --
was a strong proponent of the
idea of eugenics sterilization.
And I think that it really
-- the legacy of that --
the eugenics movement
follows us today.
In 2009, we did some press
relative this project,
and as part of the interview,
a number of us talked
about new forms of
eugenics where people
with intellectual
disabilities can be prohibited
from being married.
Because eugenics isn't
just about not --
who can have babies, but it's
about who has the right to love,
and how love, particularly
if you have certain types
of disabilities, can
become like my work,
and therefore my decision
around who you can love
and if you can marry and
if you can have children.
The Internet comments around
some of this media work
that we did were deeply,
for me, disturbing.
They strongly indicated the
idea of sexual sterilization
for people with disabilities
might be still a very wise
decision to make; that if
people have disabilities
and can't take care
of themselves,
they clearly can't parent.
In our community at Neighborhood
Bridges, we support parents
to raise their children.
I would contend that that would
be a very flawed argument based
on the science even, but
based on our experience.
I guess what we struggle
with often is this notion
that disability is a very
heterogeneous group of folks,
but our systems want to apply
with very homogeneous responses.
So, for example, of the numbers
of sort of who was sterilized
under the sterilization
act is a bit contentious,
but at a minimum, 2,800 people
were sterilized under the act.
Of those 2,800 people, only
24 people were ever turned
down for sterilization.
The average time in
front of the board,
as Glen talks about,
is five minutes.
And of those 24 people who were
initially the board said, "No,
no, we don't think they need
to be sterilized," the staff
at the institution all brought
-- they were brought back,
and actually, those 24
people were all ultimately
sterilized anyway.
So what does that mean in
terms of where we are today?
What is the experience now?
The experience now is
if you're a mum or a dad
and you're labeled as
intellectually disabled
in Canada, your kid's
probably getting taken away.
And it doesn't matter
if you can parent --
parent after you learn
some stuff with little bit
of help or a lot health.
And increasingly, the research
is showing us that often,
in fact, through the
child welfare system
and the justice system, these
kids are getting taken away
from parents labeled
as having disabilities,
but the defining decision
is typically around issues
of poverty where parents
who aren't labeled
as having intellectual
disabilities would keep
their children.
So in our experience -- I'm
going to try to say a lot
of things in two minutes now --
you know, pre-birth selection
in Canada is another big issue,
and what we're seeing
increasingly is through the work
of some activist
communities, there's this belief
that we can use value-neutral
language to talk
to parents about their choices.
And so you get judged if you
parent with a disability,
and I believe that there's a
significant cultural implication
around eugenic thinking
for parents who choose
to have children
with disabilities.
Because when they started to
talk in Alberta and Canada
about value-neutral language
around genetics testing --
and this is disability groups
have really promoted this idea
of value-neutral language
-- I guess, for me,
the first thought I had
was, this reminds me a lot
of what the Nazis talked
about when they talked
about pure science; like,
there's no ethics to science,
therefore there's value-neutral
-- you can choose to do this
or you can choose to do this
without any sort of respect
for the cultural implication
and the damage that people
like me -- as a psychologist
and a social worker --
the damage people
like me have done.
There are tremendous
people out in the community
who do good work,
but institutionally,
I think the eugenics frames
are still very much alive
in Canada where we live.
But I'm the glass half-empty
person in our crew, and Rob,
when he talks later,
is much more pleasant.
[ Laughter ]
However, I do think there's a
unique opportunity for us here
to challenge the notion
that those traditional sort
of medical models of defining
and those moral models
of defining, like who is worthy
but also who's smart enough.
The IQ test is like the
bane of my existence.
IQ doesn't mean what you are.
It means where you're at.
And that's just the
science of it.
And IQ doesn't mean the same
things as what I can do.
And I think those kinds
of challenges can actually
create futures that are,
you know, eugenics free, if you
will, and so our involvement
in survivor testimony is really
guided by that, and we believe
that we can, in fact,
make a world
where everyone's
a valued citizen,
and so our work will
continue in that area.
Thank you.
[ Applause ]
>> Now I'd like to introduce
one of my co-conspirators,
Milton Reynolds, who is
our facilitation guru.
And he will be kind of mapping
out the day in terms of a lot
of the interactive exercise
we're going to be doing
and setting the stage for that,
and also telling
us what we're going
to be doing next right now, too.
So this is Milton Reynolds from
Facing History Facing Ourselves.
[ Applause ]
>> All right.
So welcome everybody.
It's so great to see a
full room, and we're going
to get ready to try to
make meaning of the panel.
So over the course of the
day, we're going to be asked
to engage after every panel.
And in each situation,
we're going to use a different
sort of teaching practice.
And we're going to use them as a
way of creating equity of voice
and really trying to
build a conversation.
So many of the strategies will
preference listening first,
and then moving into a larger,
more organic conversation.
So the first strategy
we're going to use is going
to be titled "Learn to
Listen, Listen to Learn."
There are some I believe
they're taupe-colored papers
that are aligned
with this strategy,
and each of the other
strategies will be
on different colored papers.
So they will be in the
center of your table.
And each table also
has a facilitator.
So, facilitators, if you
could just raise your hand
so people know who
you at your tables.
Great. So they will assist
you in the first conversation.
But, again, the basic
idea of Learn to Listen,
Listen to Learn is
that everybody is going
to respond to the same prompt.
And so as a table group, what
you'll do is you'll go around,
and each person will be able
to just share a few thoughts.
It's not really an opportunity
to deliver a dissertation,
but really to seed
a conversation.
And so after everybody's had
an opportunity to go around
and share a few thoughts,
what you'll then do is just
take a moment of reflection
and then move sort of more
organically into a conversation,
but a conversation in this
case, it will be based
on the collective
assessment or takes
or big ideas from
the first panel.
And so the prompt that I would
love for you to respond to is,
what was either new or
significant to you in the panel?
Right? So what was
either new or significant?
And what questions
does it raise for you?
Right? So what was
new or significant,
and what questions
does it raise.
You might take just a moment
or two just to reflect
and gather some thoughts
in writing,
and then your facilitator
will then lead you
into a conversation again
with everybody sharing
their first voice first,
and then moving the conversation
after everybody's through.
>> Milt?
>> Yeah.
>> Could you [inaudible]?
>> Yeah. So the prompts
are: What is either new
or significant that's
presented by the panel?
So what's new or significant.
And then what questions
were raised for you?
And if you hold someplace
else, that's okay too,
but that should give
us a starting frame.
So thanks.
What are some of the nuggets
or big ideas that came
up from your table discussions
or questions you'd love
the panel to respond to?
So if you raise your hand, we'll
sort of call on folks and try
to get something in
the next few moments.
We'll go one and then two.
Yes, please.
>> What does community have
to do with these issues.
What are the -- and I liked the
notion of bridges to community.
I think that's really
of -- oh --
community and bridges
to community.
We also talked about spaces
where people could gather
to find common interests,
and then, you know,
seek common solutions.
And also the necessity of
sometimes bringing people
in from the outside of both
the social and medical in order
to facilitate these discussions.
>> Great. I know we'll go there
and then I see a hand over --
can we go back to
this table here,
and then we'll bounce
back over here.
>> So I serve on the
Board of Directors for a
Down Syndrome organization,
and being involved
with this organization, I've
learned that roughly 80 percent
of all parents, they get testing
to see if their child has the --
I forget the name of the gene --
but see if their child
has Down Syndrome.
The majority of the time,
the doctors do not even
give these families options
to have the baby.
They just do a presumptive
close and tell them
that they can schedule
an abortion
on such and such a date.
And I've got tons of real-life
stories that I've heard
from families about this.
And I was just I wondering --
well, I wanted to get your
response on how you feel
about eugenics not being
as prevalent, but it's kind
of moved over into
the abortion realm,
to whereas they're not
sterilizing individuals
with disabilities, they're
just killing the babies before
they're born.
And -- yeah.
And I think these tests
have moved into a state
to where they're not used
really to inform parents
that they might have a
child with a disability
and to provide them with the
resources or information on how
to provide that child
with a successful life
and to find happiness,
but they're more used
as a marketing product
to sell abortion.
Because with all these
families that we talk to,
they don't say, Hey, look.
You're going to have a
child with Down Syndrome.
This is what it means to you,
this is what you can expect,
this is how you can raise them,
and these are the
resources available to you.
But it's either kill or,
you know, give birth.
So I'd like to get
your thoughts on that.
>> I know there was a question,
I believe, at table 10.
[Inaudible].
Right up here.
[ Inaudible ]
>> See we at table 10, we talked
about kind of the hierarchies
of disability and, you know,
where's the cutoff; like,
what is -- what can we define
as severe ad what can
we define as healthy.
I think, like, as a
society, we're at a point
where we can talk about, like,
different standards of beauty
and all that, but for health
it's a lot more difficult
to argue.
We also talked about, you know,
the decision to have a child
with disability,
it's also a decision
to bankrupt your
family, and, like,
how we need to improve our
universal care in order
to continue that discussion.
We talked about the
tension between disability
and reproductive rates, and
how, you know, it's difficult
to parse that out, to, like,
untangle that and see if,
you know, we can't refuse that
information to parents, but --
well, we feel conflicted about
refusing that information,
but we also have to think
about reframing that
and using prenatal tests not to
abort but to better prepare for,
you know, a better childhood.
And, yeah, we think
we were talking
about how disability alone
should not be an indicator
of the quality of your
ability to parent as well.
>> Thank you.
I know there's comment
at table 7.
[Inaudible]
>> Just a quick concrete
question for Nicola, is it?
If we could hear more
concrete examples about --
of the work of Neighborhood
Bridges.
>> [Inaudible] table 6.
Back there at [inaudible].
>> We had some more questions
around the prenatal testing,
but we also wanted to know
a little bit more from Glen
about how people were
assigned to the institutions?
What that process looked like.
>> Okay. So we'll go to 16
and then back to table No.
2, and then we'll go --
just maybe one or two more
and that should give
us plenty [inaudible].
[ Inaudible ]
>> -- oh, I'm sorry.
We were talking a
lot about connections
and the larger dynamics of
these smaller questions.
So one came up around, you
know, if you were disqual --
if you were sterilized,
would you later be
disqualified from adopting.
And we had some anecdotal
information
that there were different
private agency and state laws
and a story where
that did happen.
But then we were also looking
at just these branching outs
of what are all the
different effects, not just --
so that's sort of
a larger effect
of the immediate sterilization,
but then also, the same kind
of idea of what are all the
different effects of our --
our searching for norms
and power structures
and our creating norms
and power structures
that then don't include so many
people, and how do you move
from a medical model to
a social model and have
that social model be real.
How do we deal with all
these different competing,
contrasting pressures and
tensions that are all part
of being human in
creating something
that is holistic or accepting.
I think that that's sort
of where we were going.
>> Table 2.
Were there any others?
Okay, great.
So we'll [inaudible] and
then we'll bounce back
and get one more and
then we'll move forward.
>> Yeah. Here at table 2,
a couple things came up,
a number of them, but one that
struck me was hearing some
of us talk about just
acknowledging own internal need
to resolve how we feel about
the subject, and then seeing
in ourselves that we have
some things that maybe we need
to look closer at, you know, in
terms of when is it okay to --
if you're going to have a
baby with, say, a sperm donor
and screening out, you know,
the ideal donor or things
of that nature, just
making assumptions
about what somebody looks
like and where they're from,
what they might turn
out to be in terms
of their contribution
to raising a family.
And I don't know if I can
be articulate about this,
but there was also some
discussion about the influence
of just the larger corporations
on how things are funded
and what gets focused
on without funding,
how it might influence
this discussion.
>> [Inaudible] right over here
and then we'll end up at 4
and then that should [inaudible]
>> Hi. We're all guys
here from Salinas.
We talked about how girls
have a lot of pressure
on them regarding pregnancy.
That's it.
Thank you.
[ Chuckling ]
>> All right.
So we'll go to 4 and
then -- 14 excuse me.
[Inaudible]
>> So we talked about a lot of
things, but Tina had a couple
of really good questions.
And one was, if you have this
kind of juggernaut of money
and regulation by which new
advances get installed before
people have a chance to
really even know about them --
and she was talking specifically
about the possibility
of three parent babies as a way
of combat mitochondrial
disease -- how do you stop that?
How do you combat that?
And the second question, and
this is my paraphrase but,
is more on the consumer end, the
people who would be interested
in using and paying
for this test.
How do you reach
them with a message
that preserves their autonomy
but at the same time speaks
up for caring for
maybe a larger tapestry
of people including
the disabled.
>> So I think that gives
us plenty to work with,
and I'm going to hand it back
over to the panelists to respond
to those questions and to
[inaudible] those remarks.
>> So would one of -- any of
you three like to respond first?
Glen, would you like to --
they were asking about
what the process was
like of institutionalization
and decision-making
in the institution
around sterilization.
I don't know if you
want to speak to that.
>> Well, where I went
from -- excuse me --
>> I'm not sure how that works.
>> Is that on?
>> Yes.
>> Where I come from in an
institution environment,
I was more or less treated
like -- almost like an animal.
I had to do exactly what the
staff told me, and I was,
of course, sterilized of course.
And all these things
that were involved
in an institution environment, I
had to do exactly as I was told
and with strict restrictions.
Of course, we were --
we had a bit of freedom,
but not as much as we should.
So in this case, I see that now,
since the new issues have come
out on eugenics, gives a more
open view of what we can expect
as people to see what we can
be more involved in as a whole.
So this would help me see in
the future to be more involved
in eugenics and understanding
the purposes of why we're here.
And that's it.
>> Thank you.
>> Thanks, Glen.
Would either of you like to --
Nicola, do you want to speak
to some of the questions around
Bridges and the work you do?
>> Yeah, I can do that.
Can you hear me?
Okay. We do -- we're a big hot
mess at Neighborhood Bridges.
We like to kind of
do everything.
So there are 17 members of our
community who are identified
through the sort of
provincial funding system
as having intellectual
disabilities
and being eligible
to have supports.
The types of people that
came to our community,
some of them were quite
purposeful and some
of them just kind of
happened by default.
When we began the work that
became Neighborhood Bridges,
our focus was on building
healthy communities
which included supporting
parenting.
So we work for a number
of people who are parents
who have intellectual
disabilities
who are either actively
parenting or involved
in the children's lives,
which Court of Queens bench
and our provincial
court system trying
to imbue the justice
system with the notion
that parents can parent.
But we also do, by default,
Neighborhood Bridges is a
community where often the folks
that no one else will have ends
up; so the bulk of the people
who are part of our
community are people
where other traditional social
service providers have rejected
them, where' they've
spent long, long time --
periods of time either in
the criminal justice system
or in mental health
institutions.
They're people who have what
in the traditional
vernacular would be called
"dual diagnosis."
They have severe
trauma histories,
and they have not survived well
in traditional groups settings
and the -- so we talked
today about this idea of sort
of institutionalization and
people being sterilized,
and we talked about, Glen,
you grew up at the
Provincial Training School,
but we have a hard
time differentiating
between a traditional
group home and the PTS.
Actually, I can't tell the
difference, to be honest.
So we don't run any
[ inaudible ]
-- Glen, you point was
these are folks close
to or at rock-bottom.
So one of the things that came
up at our table discussion
that what we didn't sort of get
into too deeply was the idea
that in the school system,
what we do is we silo
everybody out, right?
Like, if you're queer or --
you know, that's where you are;
and if you're of
race, you're here;
and if you have a
disability, you're over here;
and then we send kids on
into the world to try to,
like make it a better
place and they can't.
I think you put it
quite eloquently, like,
people don't see
the intersections.
So what happens in a more
sort of micro-kind of way is
if you're labeled intellectually
disabled in our community,
then any other presenting
medical issue
or psychiatric issue you might
have is automatically deferred
to the fact that, like,
you can't be having an
acute mental health issue
because you were
terribly abused.
It must be because you
have behavior problems
because you have a disability.
So our community has
become a safe place
to live and build a life.
And the sorts of
things that we do,
you asked for concrete
examples, we support people
to find their first home, to
figure out how we can be useful
to them in that home
so that they can figure
out what their life might
be like once people get
out of the way, and we
support people to go --
because all the people
in our community
of the 17 people who've
wanted to join our community,
none of them have had
inclusive educations in any way,
so we'll support them
to go back and go
to college fully inclusive,
post-secondary education
to find work, to get better
from all the bad stuff
that came before, to figure out
who you are and how you want
to be that person
because you didn't have
that opportunity before.
And because we're
built on the idea
that healthiest communities
is where that happens,
we do a lot of community
development work,
and we like to be
participating in research
like the living archives
project.
Because while we're all with
our feet on the ground rolling
around in the muck, we
figure our head should stay
in the clouds so we
can stay on vision.
So I hope that was helpful.
I don't want to hog
too much time.
>> Would you like to
delve into some of the --
>> Oh, gosh.
[ Chuckling ]
>> Yeah. I guess what's going
through my mind is what is it
that holds all these --
these threads that we've
put out here together?
You know, is there a big
picture here that we can --
in which we can understand
all the many different aspects
of insensitivity and oppression
and inequality that --
you know, that have come up.
And I guess, you know, I do
look at it through the lens
of the forces that I think
are coming toward us propelled
by a lot of economic
power behind them to --
to put into place these kind
of new ways of sorting people,
you know, sometimes people,
you know, who we say, okay,
those babies are not going to be
with us, but passed that as well
in terms of are we going to
be sorting people into terms
of their perceived genetic
capacities or traits.
And, you know, we -- this
term "eugenics," we don't want
to overuse it, we
don't want to take away
from the very specific
things that it has referred
to historically and the damage
that it's been done
historically.
But I also do think that we --
that the lens of eugenics really
does tell us something very
important about -- about
a lot of the specifics
that we're talking
about here; about people
with disabilities not
being allowed to parent,
about prenatal tests, about
human enhancement technologies
that are coming down the line.
So it's really a
challenge, you know,
to hold that all in one picture.
>> Well, I guess one
of the things I looked
at in my work is, you know,
that looking at California
and the West, and the West
as a kind of a frontier
for the expansion of
eugenics and making, you know,
the ideas of eugenicist
a kind of new Utopia
through biological selection,
and to remind ourselves
that many of the folks
involved in that were, you know,
in the time, you know,
very progressive.
They were actually members
of the progressive party.
So John R. Haynes down
in Los Angeles, you know,
who commissioned the first, you
know, in-depth kind of study
of sterilization in
California state institutions,
won local seats on the
progressive party ticket
and pushed for things like,
you know, which are probably,
you know, good things like sewer
systems and water regulation
and things that created an
infrastructure that, you know,
made most people healthier and
have access to basic services.
So at the same time, it was
part of his utopian vision.
So I guess that that's why I
always go back to, you know,
this idea that, you know,
today's science is
tomorrow pseudoscience.
And, you know, beware --
you know, beware or at
least interrogate kind
of the progressive -- what
we think are the progressive
dimensions of the uses of
certain types of science.
Another point, though, is
that I really think we need
a reproductive justice lens
in which to keep reproductive
autonomy and choice,
if you want to call it that,
and also disability rights
in conversation with each other.
It's very important not to let
those two things splinter into,
you know, competing options.
And so that's what I
really feel like this --
the commercialization -- you
know, commercialize eugenics,
if we'll call it that, pushes us
to articulate a new
position around that.
I don't know what
that position is.
That's what I'm trying
to figure out.
But it's a position
that would --
you know, at the forefront
of that, would be the rights
of those in the most
vulnerable positions
who have been judged unfit to
parent, to keep their children,
to have those rights of
reproductive justice.
But those are rights
for everyone as well.
So, you know, those are
-- there's no easy answer,
and there's no -- you know,
it is a kaleidoscopic type
of roadmap that we need, and
so that's kind of my approach.
And it's very important to
be introspective about this
and to always go back to human
experiences and difficulties
and struggles, for me, to
reoriented how I'm going
to approach this intellectually.
So that's kind of how I would
respond to some of the signposts
or the kind of the
intellectual and also, you know,
community engagement or
activists tools that I used
to navigate some of
these difficult issues.
I don't know if you guys
want to respond to any
of what we've said or respond to
more of what other folks raised.
I guess we have about
two more minutes.
Who wants to get the last word?
Glen, yeah.
>> The issues that have been
spoken of -- is the mic on?
--
>> Yeah, I think you're good.
>> The issues that have been
spoken on are very complex.
It's more of an issue of who
stands where and where we stand
on the issue of eugenics
as a whole.
So we look at ourselves in
kind of like in a mirror,
seeing ourselves as an
image, as we were created
from the creator God, of who
we are and why we are here.
So that's the purpose
I look forward to,
and this is why we are here.
