>> So a more formal
introduction of George is
that he has published several
books of poetry as well
as the memoir, Shape of the Eye,
and several of those
have won awards
and he has also published
essays and articles in outlets
in addition to the CBS
blog, The New York Times,
[inaudible], The
Literary Journal,
[inaudible] and a
number of others.
And, I've mentioned he's part
of a band called [inaudible]
on Fire whose members
describe it
as semi-acoustic
Northwest [inaudible].
Did I get that right?
>> Yes [inaudible].
>> And plus he teaches writing
at Oregon State University.
Great pedigree, George.
So [inaudible] a very long
time and very, and [inaudible]
about the intersections
that actually George makes
in the subtitle in the book
about disabilities,
biotechnologies,
and the stories that
we tell ourselves,
the stories that we tell
ourselves about ourselves
and the kinds of shared
future that we want to build.
And she has, [inaudible]
has written
and edited a lot as well.
She's edited several books
of stories about people
with disabilities
and she's written,
I [inaudible] your bio,
over 100 articles and essays
and book chapters on
topics that, among others,
include disability rights
and genetic screening.
She served as a member
of the important working group
called the Ethical, Legal,
and Special Implications
Working Group
of the Human Genome Initiative,
which she has stories about,
and also on the board
of the wonderful public
interest organization Our Bodies
Ourselves and the Council
for Responsible Genetics.
She is a teacher, she's a
trainer, she's a speaker,
and her day jobs are as
the Director of Research
and Training at the World
Institute on Disability
and she also is a lecturer
in Disability Studies
at UC Berkeley.
Okay, this is going to
be a great conversation
and before you start I just want
to tell you about a sentence
or two about the sponsoring,
cosponsoring organizations.
First, the Paul K. Longmore
Institute on Disability
at San Francisco State
University, which studies
and showcases disabled
peoples' experiences in order
to revolutionize social views
through public education,
scholarship, and cultural events
[inaudible] the institute shares
disability history and theory
and promotes critical thinking
and builds broader communities.
And, I've mentioned that Emily
Beitiks, the Associate Director,
is here and Cathy Kudlick,
the Director, is also here.
The Health Equity Institute
is also a cosponsor.
They are also at San
Francisco State University
and the Health Equity
Institute's Mission is
to create an intellectual
environment
that encourages diversity
of perspectives,
challenges conventional
approaches,
and produces innovative
action-oriented research
in the biomedical, social, and
behavioral sciences in order
to improve health,
eliminate health disparities
and establish equity in health.
Good idea.
And Laura [inaudible]
the Associate Director
of the [inaudible]
is here as well too.
And, let's see, the
[inaudible] is my organization.
We're a non-profit social
justice organization based
in Berkeley and we work to
ensure an equitable future
in which human genetics
and reproductive technologies
benefit the common good.
Part of what we do is work
to ensure that a broad
and inclusive range of public
and civil society voices are
included in deliberations
about human biotechnologies
and by that we want
to explicitly include both
scholars and advocates who stand
for reproductive,
disability, racial, LGBTQ,
and environmental justice.
And Kate [inaudible],
our Program Director
and [inaudible],
our Admin Director,
are here as [inaudible].
Finally, I want to mention
[inaudible] services
at the San Francisco Public
Library also a cosponsor
of this event and, of
course, [inaudible] support.
Jane is with us tonight.
And just to give a [inaudible]
to the library which has been
such an important San
Francisco institution
that we owe a lot
of gratitude to too.
So with that [inaudible].
>> A little closer
to the microphone.
>> Closer.
Okay, welcome again.
So I read your book and I loved
it so much that I asked her
to send me the previous
book, The Shape of the Eye.
So I want to describe the
cover because it's beautiful
and I want to [inaudible]
audience and readers.
And I'm sorry that there
aren't more pictures for books
for adults because the
pictures are wonderful.
The cover has what looks like
the feet of some people standing
in line in the water
color and it's the shadow
that predominates the cover
and I think there's
probably a back story there.
I think that the cover of
books are very important
and I'm curious, at some
point, if we can get George
to talk about the cover.
Okay, so George, tell us about
the book and I understand
that you want to [inaudible].
>> Yeah, I thought I would
just read a short section.
But, yeah, I do want to talk
about the book a little bit.
Can everyone, can
you hear all right?
Is that good?
Okay.
So you know my line
on this book is
that the elevator [inaudible]
requires a very slow elevator
in a very tall building.
It's hard to explain but it
basically, I see us as being
at a pivotal time in
human history and,
which is to say that, and most
acutely in the United States.
Cultural and legal
gains for people
with disabilities
are on the rise.
We are not remotely
near where we need to be
but there have been
significant gains.
I see this partly
through the lens
of raising a daughter
with Down syndrome.
The very fact that she
has the legal right to go
to school would not
have been the case
when I was born,
when I was a child.
Obviously, still,
there's a long way to go.
At the same time, there are,
our technological ability
to both read and write DNA
allows us the ability to select
and shape future people.
Often, those technologies
are rationalized in terms
of preventing, fixing, or
even eliminating disability.
I see these two developments,
these two cultural
developments is
like two large rivers colliding
and I see us as living all
in the cross currents.
It's just this swirl
of conflicting ideas
about disability, about
the value, value of life
and which lives we value.
The premise of the book is
that once we have this power
to select and shape future
people, either to pick,
you know, one embryo or not
another or to actually tinker
with the DNA of one embryo,
the [inaudible] a
question of belonging.
That raises a question
about which bodies
and minds we welcome.
So that's the premise
of the book.
The book itself is a bit,
it's on the model of an essay.
It's not a scholarly book,
just by all the long words
in the subtitle, it is really
kind of a non-specialist wander
through this strange territory,
my attempt to keep my head
above water where these
two streams intersect,
my attempt to think through all
of these conflicting meanings.
And it's an invitation to the
reader to come along with me.
To do that, I've both
analyzed the stories
that we're telling ourselves,
I look at the way we're talking
about biotech and disability,
and at the same time
I tell stories,
mainly about my daughter, Laura.
So what I thought I'd do
is I'd do a short reading
from the book just so you
can hear what it's like
and then Marsha and I
can talk a little bit.
So I will do that now.
This, both of these readings
are two short excerpts
from the third chapter.
The third chapter is
about people and animals
and the premise is that the
idea of directing the evolution
of people, of managing
the way the species goes,
controlling the way the
species goes, is always wound
up with the idea of directing
the evolution of animals.
And I, to talk about this I
reach back into the history
of American eugenics but I start
with the story in the present.
This chapter begins
with an epigraph
from a Republican state
senator from Oregon from 1917
and the epigraph is this.
"The people of Oregon have
safeguarded the breeding
of fancy horses and cattle.
They should at least do
as much for their people."
In the depths of my hard drive
is a photograph of Laura, 13,
posing next to an alpaca
at the Benton County Fair.
They are dressed up as Elsa and
Anna, the sisters from Frozen.
Magno, the alpaca, is
draped with pink fabric
and his head sports
butterscotch-colored pigtails
made from a braided
pack of yarn.
Laura's hair is sprayed silver
and she is wearing a long,
blue dress, elbow-length
white gloves,
and pink New Balance sneakers.
As a then-member of the
Lucky Long Necks 4-H club,
Laura had spent a year
working with Magno,
who lived on a farm
outside town cropping grass
and tending his buried
species memory of the Andes.
Laura had learned
to walk Max forward
and backward in a circle.
She had brushed his soft
coat and learned the names
of a couple of alpaca diseases
and one day she even
gave him vitamin shots
with a veterinary syringe.
Laura has since moved on to
keeping and showing rabbits
and Max has moved on to
the great Peruvian pasture
in the sky but we
remember him fondly.
He was old and gentle
with an unruly mop of hair
and spectacular bucked
teeth, like a cross
between an early
Beatle and a camel.
The Frozen costumes are part
of the large animal costume
contest, which is a ritual
at the intersection of drag
show and animal husbandry.
For it, the Lucky Long
Necks led their [inaudible]
in an impromptu parade
around the fairgrounds
in the blazing heat.
Laura had hoped to sing
one of the Frozen numbers
for the judges and was
disappointed when this turned
out not to be an option.
Among all of the fears and
hopes and uncertainties
and predictions I
entertained after Laura arrived
and was diagnosed with Down
syndrome, I can safely say
that no scenario involved
an aging male alpaca dressed
up to resemble a
fictional Disney princess
at the Benton County Fair.
The costumes were Laura's
idea though Theresa,
my wife, [inaudible].
We like 4-H for the
same reason that we
like the Special Olympics
unified basketball team.
It's a place where children
of different abilities
can be together on equal,
if asymmetrical, terms.
But in 2017, as I
researched this book
and Laura researched
rabbit diseases
so that she could answer
the judges' questions during
showmanship, the history
of American eugenics cast a
long shadow across the fair.
It was sweltering,
pushing 109 degrees,
and as the sweating kids
plumped their rabbits
on individual carpet
squares waiting for judgment,
best in breed, best in show,
the whole enterprise seemed
like an exercise in bunny
eugenics, a separation
of the fit from the unfit,
a careful examination
of bunny physiognomy
to determine the local
pinnacles of the breed.
The directed evolution
of people is inseparable
from the directed
evolution of animals.
From Dolly, the cloned
sheep, to gene edited mice
to CRISPR engineered
miniature pet pigs,
animals are the models
we use to work
out the details of the future.
But historically, to
invoke animals was
to invoke intellectual
disability.
Non-human animals
defined the lower boundary
of a human heart hierarchy,
which feeble-minded people
approached or crossed.
It was a racialized hierarchy
with whiteness at the top
and non-white races
at the bottom.
That complex set of
prejudices is distilled
in the phase Mongolian
idiocy, which blends race
and disability,
and it underlines John
Langdon Downs racial system
that that loose association
of race, disability,
and non-human animals
is still endemic online.
So for all these
reasons, Laura's presence
at the 2017 Benton County Fair,
a full member of the Claws
and Paws of the Roundtable
4-H club, which is not
to be confused with the Benton
Rabittears, the Critters
of the Valley, or the Happy
Hoppers, a high school junior
with a Facebook account
and a bedroom wall banded
with blue ribbons and Star Wars
stickers at the high tide line
of her outstretched fingers, is
a marker of genuine progress.
In the early decades of the
20th century, at the height
of American eugenics,
a child classified
as feeble minded would've
[inaudible] if at all
as an idea of what to avoid.
For a time, in fact,
it was people as well
as animals competing
for ribbons at the fair.
And so what I talk about next is
there was this very odd cultural
phenomenon during the kind
of the golden, I don't know
if you'd call it the golden
age of American eugenics,
the [inaudible] age
of American eugenics,
the mainline eugenics area,
called the better babies contest
and the fitter families contest.
And these were contests that
were held at state fairs
where families would undergo
extensive examinations,
answer questionnaires, they
asked about genealogies
and to be given a grade
about who is fit to breed.
And at the end, the most fit
family would win a ribbon
and a trophy.
And you can still see
pictures of these contests.
They also had the
better babies contest
where they dressed all
the babies up pin togas
for some reasons and
they graded them as well.
And this, you know, this is
interesting to me as a writer
because central to the
whole eugenics projects
with the stop breeding metaphor,
this idea that, you know,
breeding animals and
breeding humans is parallel.
So this ritual made
that literal.
And I just want to read
a couple of the posters
that accompanied these contests.
So one reads, "How long are
we Americans to be so careful
for the pedigree of our
pigs and chickens and cattle
and then leave the ancestry
of our children to chance
or to blind sentiment."
And, as I write, the block
letters are handwritten despite
the implied ethos of
perfection the lines are not
quite parallel.
The significance of
the quotation marks
around the word blind is
unclear but the parallels
with contemporary
rhetoric are unmistakable.
If human improvement
is on stage,
disability-based metaphors are
usually skulking in the wings.
And I want to, I'll
just read a short bit
from the end of the chapter.
Another thing that I write
about in this chapter
is de-extinction.
That's the idea of
bringing back creatures
like passenger pigeon
[inaudible].
And I'm really interested
in that application
of genetic technology and how
it might relate to other kinds.
So, fitter families, better
babies, de-extinction, metaphor,
Laura, bunnies, mammoths,
Oregon, home,
I'm building a Rube Goldberg
device [inaudible] a synthetic
biologist if a synthetic
biologist were a non-linear
thinker with a daughter
with Down syndrome.
Perhaps this is only
serious [inaudible] making
with a question attached,
a non-standard thing built
from the registry of standard
intellectual [inaudible] words.
If this is the case, so be it.
I pursue the connections to
see if there are any and I try
to assemble disparate things
into a working picture,
to find coherence a
stay against confusion.
So as I think about
the possibility
of mammoths becoming
more common,
I think about Down
syndrome becoming more rare.
Live births of children with
Down syndrome are currently
about 1/3 less than
what would be expected
and with the increased
uptake of new prenatal tests,
this trend is likely
to accelerate.
I don't think people with
Down syndrome will go extinct
but they may become
vanishingly uncommon.
One online graphic used,
and this is at the organization
Revive and Restore that's used
to advance the project
of de-extinction,
one graphic shows extinct
and threatened creatures
as shadows in a landscape.
I mention, I imagine a parallel
image showing silhouettes
of people with genetic
conditions, Down syndrome,
hereditary deafness,
achondroplasia.
My daughter [inaudible].
For many, I think,
more mammoths and less
Down syndrome is a win/win,
a desirable outcome.
The pitches, in any
event, are linked.
The same people who argued for
resurrecting lost species tend
to argue for eliminating
genetic disease.
Whether Down syndrome goes
the way of the dodo depends
on whether it's considered a
disease, whether it is seen
as a part of a diverse humanity,
or simply as a problem we'd
be better off with without.
That no official
eugenics records office
or American Eugenics Society,
is vested in reducing the number
of people with Down syndrome
but no coercive government
agency sets current reduction
targets, it's not as
important as it seems.
New prenatal tests are sold
to individuals and sold
with the rhetoric
of individual choice
but cultural values influence
individual decisions which are,
in turn, multiplied
by technologies
into population [inaudible].
So perhaps one day American
fitter families will leave their
future firesides, traveling
on a Siberian adventure
tourist package
to see hairy elephants
tromping the permafrost.
Maybe passenger pigeons
will darken the skies
above the subdivisions where the
New England [inaudible] raining
feces on the tract homes of
genetically healthy families.
Maybe 4-H will add
new categories
to its small animal competition,
best de-extincted,
best engineered.
There will be Facebook posts,
Mackenzie's passenger pigeon won
in best in breed,
hashtag diybio,
hashtag de-extinction,
hashtag so proud.
There will be super
muscular [inaudible] the size
of Labrador retrievers,
roosters with perfect,
gun-colored [inaudible] so
long you could tie [inaudible]
with a single feather.
If these come to pass,
I'm less concerned
about animals being shown than
the children doing the showing,
about who will be
present and welcome.
Thanks.
[ Applause ]
>> What, among many things,
I love about this book
when I read it and I
was so pleased with it
that I quickly asked George
to send his previous
book and I read that one,
both are very intimate,
personal essays,
The Shape Of The Eye
much more a memoir.
So I'm very moved
by your writing.
And, also that there is so much
in common with our interests
and my work over [inaudible]
decades and I've been involved
with the disability rights
movement for four decades now.
My interests [inaudible]
and, again, issues in common
Down syndrome is a primary
target of prenatal screening
and selective abortion
and my disability is the
second most [inaudible].
So that's [inaudible] for me.
I, George mentioned
the eugenics movement,
which is such a big deal for
us to explore and understand.
By the way, he said the book is
not scholarly but I think it is.
It's a very nuanced analysis
from a disability [inaudible].
Right into it, okay.
So I encountered eugenic
ideology in my childhood.
Many medical providers subtly
or not subtly made sure
that I should not
plan to procreate.
And my mom had to fight to
get me into kindergarten,
I being a child with
difficult cognitive functions.
So things, yes, have changed.
We've moved light years
ahead in my lifetime
and we have light years to
go around the world as well
as in the United States.
So I really appreciate George's,
so we're going to be getting
into uses of genetic
technologies
in our conversation.
I do want to mention
some basic concepts
for our listening audience.
One is about what George
develops very nicely is the
distinction between
what we call the medical
and the social models
of disability.
And biotechnologies
focus on changing genes
to improve people is very
much a medical model approach.
The assumption is
what's wrong with people
with disabilities
is solely located
in that individual's
body and from the purview
of genetic science, in that
person's genetic makeup,
their DNA.
The social model looks
very broadly at the society
and locates disability in the
environment, in the attitudes,
in the architecture
and sometimes disability
discrimination is literally
built into the cement, into
the bricks, the stairs,
the lack of elevators,
or are now with amazing new
technologies they believe
disabilities can be included
in all kinds of ways,
cool ways that weren't available
in previous decades
or centuries.
So we challenge the
medical model,
I like to call it the
medical deficit model
because we don't want
to blame doctors.
It wasn't their fault.
These notions are millennia old.
And as a result of the confusion
set by the medical model,
the stereotypes of people with
disabilities abound and a piece
of the stereotype is
don't ask, don't stare,
don't learn, don't connect.
So I want to ask George to talk
about the stereotypes of people
with Downs, his daughter
and people of all ages.
>> Well, so thank
you for that Marsha.
It means a lot to
me, I am a very,
I don't identify as disabled.
I haven't faced these
things in life.
I'm connected to questions of
disability through and because
of my daughter, Laura.
So that raises a whole separate
host of questions for a writer.
What does it mean for me to
weigh in on these subjects
at all and it does mean taking a
lot of care and trying to defer
to other voices when I can
but that's [inaudible].
In terms of stereotypes, you
know, I covered a lot of this
in the previous book, The Shape
Of The Eye, and I kind of saw
that book as driven by
attention between two figures.
Okay, one is the stereotype
of Down syndrome, which is,
you know, like, I mean, I don't
even need to explain it to you.
I mean, I knew it before Laura
was born and I think, you know,
there is that they are sweet,
that they are good natured,
you know, sometimes stubborn,
musical, and I did a lot
of thinking about those.
But in the end I was
trying to oppose that kind
of ghostly stereotype to
the real life individual
who is my daughter, who is not a
generalization of the diagnosis
but who is a single person
living at a certain time
in the Pacific Northwest in a
certain circumstance and to kind
of contrast the shadow
of stereotype
versus the full-bodied person.
Similarly, for a writer
that means thinking
about a person having an
individual, singular story
as opposed to stereotypes,
which are extracted from time.
So, you know, obviously
every, I think, you know,
form of embodiment, every
form of disability is likely
to have some stereotypes
attached to it
and the problem is that they
want, one of many problems,
is that they obliterate
the perceived identity
of the person.
I think that it's, that Allison
Carey wrote, On the Margins
of Citizenship, right,
she is saying, you know,
we have made great strides.
There are rights that
are written into law
that did not exist
before but it's not enough
to have those rights there,
the person has to be perceived
as a bearer of rights and so if
that person is perceived only
as a medical figure or only
as being, kind of, you know,
cute or sweet or whatever and
then it almost doesn't work.
>> You actually moved me to
think a little differently
about all different kinds
of categories impairment.
Actually, that's another
piece of disability theory I'd
like to share that we call the
actual physiologic condition
that a person has the
impairment because we want
to make a distinction between
that and the limitation
in ability of people with
these impairments caused
by this society and those that
we refer to as the disability.
Because people with disabilities
have all kinds of abilities.
And so-
I think we can do the
same history that,
analysis that George
gives to Down's
with every category
of disability.
It started making me
think about, for example,
deaf people have
written quite a bit,
blind people have written quite
a bit about the socialization
of the society in relation
to those two categories.
But I have yet to see a book
about dwarfism, for example,
[inaudible] history of the
seven dwarfs and, you know,
court jesters and so on, and
so it made me start thinking
about spina bifida, what are
the myths of spina bifida
that I can explore and, you
know, get together a focus group
of people with that condition.
Jumping ahead to the end of the
book, you develop some thinking
about Roy Rogers and Dale Evans.
How many old people like
me here remember that?
And I didn't, I haven't
thought about this
since I was maybe 7 years old.
So in my bedroom I shared with
my brother there was a light,
a night light, of Roy Rogers
and Dale Evans and my mom,
who was a really great advocate
for me, my parents were sort
of like you and Theresa.
My parents refused to accept
the stereotypes about disability
and I'm also very [inaudible]
by my friends who didn't have
that kind of parents who have
turned into ferocious fighters
for disability rights.
But my mom made a point
to tell me that Dale Evans
and Roy had a child
with a disability.
I don't know, I don't remember.
And I remember, now, no I don't.
Now I'm thinking back that
my mom wanted to connect
with other parents with
disabilities and at the time
of my upbringing in the 50s,
there were no support
groups for parents.
There were no social
workers for parents.
There was the doctor
and, giving, you know,
the best information they
could as well as a lot
of misinformation about my
condition and the conditions
of other children that I was
meeting in Shriner's Hospital.
So I want to talk some about
parents and the marketing
to parents about these genetic
technologies and the impact
on a pretty vulnerable
population of people
who may have pregnancy and
are thinking about parenthood,
maybe for the first
time or whatever,
and how the marketing can
influence the way these
technologies are used and sold.
>> So, yeah, thank you, Marcia.
And then we, we talked
about this some before this
event just the general idea
about it's an impairment
in context, it's the body
in context that determines
the experience,
determines the meaning
of disability
and that you were fortunate
enough to have parents
who advocated for you,
which changed the
meaning of the impairment.
This is, this was, you
know, new to me in 2001,
when Laura was born I was trying
to sort through all this stuff
and just beginning
to realize that, one,
how many misconceptions
I already held
about like this is bad news or
a tragedy or anything else and,
two, realizing that the future
is actually up to us, to Laura,
and dependent on
other things too.
So that context is critical.
With respect to genetic
technologies,
so I write in the book
some about a new kind
of prenatal test
called NIPT or NIPS,
non-invasive prenatal
screening and it is a,
it's a blood test
for pregnant women.
It is able to detect the
chances of Down syndrome
and some other disorders based
purely on maternal blood sample
as opposed to, say
amniocentesis,
which samples amniotic fluid.
It is not a diagnostic test.
It's a screening test, which
means it tells you chances
but nothing absolutely certain.
What interests me about the
prenatal testing is the fact
that these tests are
for-profit products
and so they are accompanied
by for-profit persuasion.
I'm interested in
the [inaudible].
And there's a really
important distinction to make,
which is to say that, you know,
genetic counselors I've talked
to say that these are
reasonably good screening tests,
they have their limitations
like any test.
Many women find them useful.
One can understand
that that is the case
and that this can be part
of a woman's pregnancy
decision making in cooperation
with a genetic counselor and be
reasonably useful in that way
and at the same time say
that the ads themselves are
deeply problematic in the way
that one can say that
depression is a real thing
and antidepressants
can help with that and
yet that some advertisements
and marketing practices
are deeply disturbing.
So I focused on the ads and
what I found was that they were,
in a way, really conservative.
Not as in Democrat/Republican
conservative but in the sense
that they showed ideal people in
a very, very narrow [inaudible].
They showed mothers who
were, leaned towards white;
there was some diversity there
but they were more white.
They were very well off.
Their children were chromosoly
typical and beautiful.
The families pictured were
clearly two-parent families
in a heterosexual union where
typically the husband was,
you know, a male model and
who is protective and loving.
And the woman was attractive and
she clearly never had any nausea
or excessive weight
gain or anything else.
And so with this kind of
ideal world it's the same kind
that is used to sell us
everything from Diet Coke to,
you know, potato chips and that
struck me as itself problematic
because this is an incredibly
consequential decision
and it seemed to me like this
information would be better
coming from a medical
professional
and not from an online ad.
So I guess to me this question
matters for two reasons,
one is that because these
decisions are so consequential
and because they're so
fraught because the desire,
the reasonable desire for a
healthy child is so strong,
this is a very delicate
situation and I think words
and images can have
a greater effect.
So that's one reason
that this interests me.
The second is that future
genetic products are also likely
to be for-profit
and so if we look
at the way current products are
marketed now we may have a clue
as to how to think about the
future products that come down.
If, for example, something
as is advocated by some say,
[inaudible], which is sometimes
called a word processor
for genomes, is used to alter
embryos, these are likely
to be products as well
and so we should think
about how will they
be pitched to us.
I think as citizens we should
think how will we respond,
how can we be appropriately
skeptical
and evaluate these things
in a way that contributes
to our happiness [inaudible].
>> Next [laughter].
Okay, we're thinking about
eugenics and we're thinking
about CRISPR, which is
c-r-i-s-p-r, it's an acronym
for a very long, complicated
genetic description
of the process.
And these forces are
operating; eugenics operates
in an unconscious
way in our society.
We like to think that
that era is over.
It is so not.
There are still women
being sterilized,
primarily now black
women in prison,
but even up until the 70s,
sterilization of women assumed
to be problematic in terms
of whom they might produce
was still operating.
So eugenic ideology operates
in the realm of procreation
but at the more DNA level,
the conversation operates
without the voices of people,
largely without the voices
of people who actually know what
it's like to live the experience
of these conditions
and [inaudible].
>> So, Karen, I was promised
easy questions but [inaudible].
>> It's a snap for you.
>> Yeah. [laughter]
So I was talking
about this with Marcie earlier.
I think in one way
it's the easiest thing
to agree on, right?
Like, we have powerful
technologies
and it's no longer notional,
we can engineer the species
quite easily if we want to.
We can do it at scale.
CRISPR is cheap,
it's easy to use.
It's not remotely ready for the
clinic but it could be soon.
It has error rates, you send
it in and make some changes
and it can also make some
changes you didn't want
to have happen.
My basic assumption is
that given the presence
of these technologies, they
are more likely to contribute
to human flourishing across the
board if more of us weighed in.
And one reason it is hard to
get that conversation going is
that there are so many other
things to occupy our attention.
But even if you forget the
games on our phones and Netflix,
there is the small matter of
climate change and the fact
that the government
appears to be crumbling.
So with all of that stuff
it's really hard to think
about a slightly more
distant thing like well,
what if we're engineering
the species.
One reason I wrote this book
the way I did, to do it as kind
of an informal, like,
say I'm a non-specialist,
I'm actually a poet, I'm going
to ramble through these things,
is to hopefully give people
a little bit of courage
to say well, okay, I can
ramble through this too.
I can learn a little bit more
about it I can raise
my voice even
if I'm not a molecular
biologist.
I can learn to speak up.
But beyond the question of more
of us needing to become aware
and participate, there
is more acute question
of what our position
is in the conversation.
There's a way in which
conversation can simply ratify
what people are going to do
anyway, where it can be like,
okay, well, you know,
you've spoken up
and your position is
noted but we're going
to leave it with
the experts now.
And I think that,
so, ultimately,
it becomes a question,
the way I put it
in the book is the difference
between having a voice
and having a say and I
think that's a really
important distinction.
So people like Marsha,
who have been raising hell
for four decades are going to
be really important in this kind
of conversation, speaking
up and saying okay,
well the rhetoric attached
to this technology,
basically dehumanizes me.
It renders me as a problem as
opposed to part of a spectrum
of human variation or someone
who has a creative way of being
in the world or anything
like that.
So I think the conversation
needs to be more widespread.
I think it needs to include
the people who are most likely
to be affected by the
technologies and my dream is
that it will not simply be
a matter of consultation
but a matter of actual
democratic participation.
I don't know how
to make that happen
but that's my Christmas
wish list.
>> Okay, good.
The lines, if we're using that
metaphor, are really fuzzy
for those of us in the
disability community.
We're not advocating that
there be more disabled people
in the world although I
personally am a staunch
supporter of the value of lives
of people with disabilities.
There's lots of [inaudible]
stereotypes about how courageous
and inspirational we are,
which are not that helpful.
But I think that people
with disabilities have
really unique lives
and interesting contributions
and our perspectives
are valuable.
My primary concern that involves
disability stereotyping is the
notion that the burden
of our lives
and our suffering can be
stopped with these technologies,
these assertions made
without actually involving the
communities of people
with these conditions.
And we, again, to return to
the macrosocial model that,
from my standpoint having met
literally thousands of people
with disabilities and gotten
close to very many, that a lot,
for the vast majority of
people with disabilities,
the suffering is
caused by oppression.
That the exclusion, the lack of
accommodations, the attitudes,
just stop about who we are,
not appreciating or accepting
that our unique experiences
and the way we're moving
and the way we look, everything
about us is [inaudible]
and a lot of creativity
and of great value.
So I want to talk about how
these specific stereotypes can
be challenged and I want
to engage the audience
and I think we're going to move
toward questions and comments
from you because
we want your ideas.
We want you to read the book.
>> Mmhmm.
>> And George is selling
some, by the way, $25.
And we want your thinking and
we want your ideas about how
to engage the public,
the disability community,
your family, your church or
temple group, your everybody,
your organizations
in conversations
that will move this
thinking forward.
So let's turn to the audience.
>> This is a suggestion
about how we can, you know,
treat you better or whatever but
I'm really curious if anybody
in the technology,
biotechnology conversations
and genetic testing and all of
that are thinking systematic
or systemically about things.
So, for example, if you
edit one set of genes,
what are the ramifications in
a generation or two generations
and how are they connected
to other genes down the road.
Are people thinking about
them or is it truly sort
of just my baby, it's going
to happen like this for my kid
and down the road
it doesn't matter.
And I'm wondering
if that's the way,
I know we're not a great society
about thinking, you know,
[inaudible] but I'm wondering if
anybody is engaging in that kind
of study and thinking about it.
>> I can answer as a layperson
and then maybe there are
some science-minded people
who know more about that
but I think primarily it
has frankly been a consumer
perspective, that the
technologies are being thought
of as a way to fix this next
pregnancy rather than thinking
down the road at all because
we don't have the understanding
of DNA [inaudible].
So somebody else want
to comment [inaudible]?
>> So I think there
are, I think there is,
it depends on where you look.
I mean, obviously, I think
as a research question people
are thinking about, like,
you know, have this
understanding
of the change you make
in one generation may
have unpredictable effects
in further generations.
I would, you know, for this
book I was looking less
at the basic research than at
the consumer decision and in
that framework it's purely, you
know, about a parent and child.
There are many, there are
many parents who have children
with an inherited
disease who are interested
in using gene editing as a
way to potentially prevent
that disease, especially
if it's [inaudible].
Yeah, in other words, and
I think for some parents
who would rather not have an
abortion, that the possibility
of changing the one
letter that is resulting
in something is very appealing.
And I want to, I feel like
I need to read more of that
and understand, you
know, understand that.
So, but I can't, I feel
like I can't generalize
like across the board whether
that's the case but certainly
in the consumer perspective it's
not about later generations.
>> There are many of us
in bioethics concerned
about the politics right now.
There's debating about whether
we should have a moratorium
or even a ban on this
technology, you know,
given the history of
eugenics and the assumption
that in the heyday
of eugenic ideology,
there was such arrogance
that those people knew.
That the appalling
research methodology
that was operating then has been
exposed but now we're at a point
in history where we see
the assumption all the time
that we figured that
out, now we can operate
with an ethical attitude and
we have nothing to worry about
and that is such
faulty thinking.
We don't know what
the impact of messing
with the genes can
be down the road.
So, you know, many of
us feel very strongly
that we should ban this
technology because we have
so little knowledge of the
impact of this editing.
So I want to hear
from other people.
[ Inaudible Comments ]
>> Oh, about the polio vaccine?
>> Yeah or just vaccinations
in general.
[ Inaudible Comments ]
>> I would say there's a huge
difference between vaccinations
and gene editing and
I'm not going to get
into the vaccination
debate right now
because we don't
really have time.
We can talk afterwards.
In fact, we can stick
around a little bit.
But I think that vaccinations,
the concept of vaccinations
are a public health issue
and there's controversy
because there are children
with immune struggles who have
negative reactions to vaccines
and that's problematic.
But the idea of the polio
vaccine being disability
discriminatory I
think is [inaudible].
So I think that's a clear red
line to be drawn, personally.
Anybody else want to?
>> So, there's a
couple of differences.
One, one is that CRISPR
[inaudible] applied
to embryos are experimental,
vaccinations are not.
Vaccination is treating
a single, existing child,
altering an embryo is
creating something different.
So there are two really
significant differences there.
I'm glad you brought that
up because this is one way
in which new technologies are
advanced is by likening them
to the familiar, something
that's already accepted.
So it does seem as if this
technique could be understood
as a public health measure,
as genetic vaccination
but at this point there
is a huge difference
between something that is
proven like the ability
of the polio vaccine
to prevent polio.
You can point to the eradication
of small pox; you can point
to the, well, unfortunately,
the resurgence of measles
but the effectiveness of
vaccines against measles.
So these are incredibly low to
no risk interventions as opposed
to something experimental
and new.
So I think the details are
really, really important there.
Thank you, thank you.
>> I have a comment
and a question.
I think in regards to your
question, original question,
I think that inclusion is so key
to people understanding
what disability is,
understanding the value.
And one of the most moving parts
of your book came very early
where you were talking about
your house and you were talking
about the door to your house
and how, on the outside
of your house, is the world
and how Laura, in the world,
is stigmatized in all these ways
and inside your house
it's completely different.
She gets valued,
differences are embraced,
and all these wonderful things.
And that resonated
a lot with me.
And my question for you is,
and I'm afraid it's not going
to be an easy question.
My question for you is how has
your experience raising Laura,
has it and if so how has it
changed both how you think
about intelligence, which
after all is something
that I think any of us
in the room will say
that are things we love the most
we might think of as the product
of a sharp or heightened
or thoughtful intelligence.
How has your experience raising
her changed how you think
about intelligence or how
you value intelligence,
which is also a category
that we associate
with our humanity
in a lot of senses.
>> I've written about
this in both books.
So, a couple of things, one
is just I had always said
that I didn't believe
intellect was everything
and to some extent
this was, you know,
being a smart ass 15-year-old
rebelling against parents
who very much wanted
him to go to Harvard
and I was like, you
know, whatever.
I'm going to do something
different.
But you know, I was
like, you know,
intelligence isn't everything;
empathy matters and
all these things.
So that's what I claimed and
it's what I thought I believed
but having Laura
called me on that.
So to have a child
with intellectual
disability made me realize
that it's one thing to
assert that intellectually
and another thing to live it.
So Laura is, it wasn't,
it's partly Laura's arrival
and thinking about her, reacting
to her changed me in many,
many ways but one was to
really bring home what it meant
to believe what I
said I believed.
Now, with respect to this
book I want to go back
to something Marsha said,
which is about the claim
that like the old eugenics,
what's called the mainline era
of eugenics, classical
American eugenics 1900 to 1935,
it's often said that's like
completely different from now.
But there's the historians
that I really value have
charted many continuities,
the double desire for health
and human improvement is one
that Nathanial Comfort writes
about very convincingly.
But the other strong connection
between the old version
of eugenics and whatever
is happening now is the
over-valuing of intellect,
the enshrinement of intellect
as the main feature of interest.
You know, you have this in
the dreams of, you know,
maybe engineering or selecting,
you know, ever smarter people.
I find that problematic
and so Laura's arrival really
had me thinking differently
about intellect and IQ
and all the rest and so
in this book I tried to push
that [inaudible] further.
Thank you.
>> You raise this very
important distinction
between getting a voice and
having a say and I was wondering
if more and more people
were able to have a voice,
especially people from the
disability rights communities,
what would you urge them to say?
And I was wondering, and
I hope to read the book
and then I'll know,
in that discussion
of what you would
urge them to say,
do you in your book
make a distinction,
the distinction [inaudible]
between somatic editing
and germline editing and
is there information there
for people in the disability
rights community to know
so that somatic editing might
affect them without problems
but germline editing
could be a problem
and would you urge that to stop?
>> Thank you.
That's, and I'm glad you
brought that distinction
up because I want you
to mention that after,
with Marsha's [inaudible].
So there's a critical
distinction
between germline editing, which
is editing either sperm, egg,
or embryo, which means
those changes will be passed
down in perpetuity,
and somatic editing,
which affects one person.
Like, for example,
if you, you know,
editing someone's stem cells and
restoring them to that person
so they can [inaudible].
The somatic editing I don't have
a problem with in principle and,
in fact, some of the
people doing that work,
one reason they hesitate about
germline editing is the fear
that a high profile disaster in
inheritable editing can screw
up all the other useful
clinical applications.
I can say too, just
speaking generally,
I don't have a problem
with CRISPR per se,
it's a tool, a useful tool.
My wife actually uses it in her
lab so the problem is not CRISPR
to me nor is it somatic editing.
I'm really pretty closely
focused on germline editing
as something that is, there
would be a great concern.
I am really hesitant, kind
of for the reasons I mentioned
before, to urge people
with disabilities
to say anything.
I want to hear what they have to
say including the difficulties
to say like, well, what are,
you know, what are the aspects
of this impairment, what are
the grey areas say involved
in chronic pain [inaudible],
you know.
What are the things that
are less affected by stigma,
what might you want to change?
I would want to hear all of them
and then take it in but this is,
I don't have a something
to urge.
I more want to, I just think
that there's a huge dearth
of voices of people living with,
creatively with disabilities.
As often pointed out, is
our resource of how to live
with technologies, we're
talking about technologies,
the people who are living
in the closest interface
with technology are people
with disabilities [inaudible].
Yeah?
>> Just a follow up.
>> Yeah.
>> [inaudible]
So how would you suggest
we avoid the problem
that I think you
also referenced,
which is about [inaudible]
that the more we discuss the
more we normalize something
that perhaps instead of saying
this is not a good idea,
we shouldn't be doing it,
the more people that we bring
to this table the more
normalized the idea
that this is something that
actually has [inaudible].
Like, what's wrong
with germline?
You know what I'm saying?
>> I think it depends
on how we talk about it.
I think it, I think that,
that's a really good question.
I actually think of this as
a little bit of a tangent
but I think about this
in terms of the movies,
which is to say there are
superhero movies all have
enhanced people, right,
genetically technologically
enhanced people.
And some of them have a really
strong message of warning.
Like I wrote about Spiderman,
the 2012 Spiderman, in here,
which has a fairly strong
anti-corporate message,
a very strong message about
the abuses of technologies
and the way the wish for
cure can slide into the wish
to become a giant lizard
guy, I don't know [laughter].
But, you know, even so, even
as the movie is clearly
giving this skeptical message,
it's making it all look really
cool, it's normalizing it.
So even a warning can normalize.
So I don't have an easy answer
for that but I think one thing
that is useful to do is to ask
emperor's new clothes questions.
Like, okay, so what
error rate is acceptable?
Like let's say we start,
you know, even let's say
that we're not talking about
enhancements, you know,
we're not talking about
ultraviolet vision, wings,
any of that trans human stuff
but say that like we're going
to focus on things that everyone
agrees are diseases, right?
What error rate is acceptable?
Who is responsible, you know?
Who gets to say?
Who's going to govern
these things?
Because it's easy to talk
about this in the abstract
but this thing is going to come
down to actual people
visiting actual clinics.
How expensive is it going to be?
If this involves large-scale
harvesting of eggs, who is going
to be donating the eggs?
And so now you're into quite,
and then to some extent you're
displacing the question just
from the technology, which
is the shiny cool stuff,
is the old questions that I
hope would interest us anyway,
which are questions of
equity and fairness.
So that's, you know, off the
cuff that's the best I can do.
>> Thank you.
>> I want to, we do mean not
to romanticize disability.
It can be, disability
can be somewhere
between very inconvenient
and devastating including early
death and tremendous pain.
But I absolutely agree that
the voices that we want
to hear will change the
dialogue and you're right,
we can't speak for anybody else.
So I'm speaking for
myself, you know,
as I mentioned the main concern
that I have is that stereotypes
of the burden and
suffering of people
with disabilities are being
exploited by the marketing
of these technologies.
But, and there are other
constituencies at stake here.
Racism is a huge factor
in the applications of,
potentially applications of
these genetic technologies
and gender identity and so on.
And so we need to hear from
all marginalized constituencies
in this conversation to have a
better picture and I'm intrigued
with this notion
of normalization.
But I'm not so worried
about that yet as much
as getting the marginalized
communities engaged and outside
of our denial and despair I have
a concept of eugenic denial,
sort of analogous
to climate denial.
You know, if you think somebody
else is handling it you are
in denial because no.
So I want us, we really need
to wake up here and engage
in our community
groups, conversations
about these technologies
[inaudible].
>> Yeah, I want to
jump back briefly
to you mentioned the possibility
of [inaudible] and I wondered
if that's, something
we've had to grapple
with in the deaf community over
the last 15 years with respect
to cochlear implants is that
there is [inaudible] feedback.
It's here so we had to sort
of reframe how we think
about our community and who
belongs in that community
and what it means to
have a cochlear implant
and also be a deaf person
and all of these things.
So I'm wondering if that
is [inaudible] with respect
to CRISPR where in particular,
given it's [inaudible]
that we're past the
point [inaudible]
that we're past the point of
a ban or a moratorium and have
to start grappling with it's
out there what do we
do next [inaudible].
>> I would say I think
that's a really good point
but I would say a
key difference is
that cochlear implants
are widely used
and there's a whole network
of, you know, teaching of like,
my friend Laura Mauldin wrote a
great book called Made to Hear
about that and so, you
know, there are therapists
who teach [inaudible]
parents on their use
when children are born
deaf and there is,
so there are many
people using them now.
CRISPR, so far as we know, has
been used to edit embryos twice,
in the case of Chinese twins
who were born [inaudible]
and then the same
scientists, [inaudible],
seems to have initiated a
second pregnancy with this.
But a moratorium is
reasonable, I think,
because the technology
is out of the bottle
but the clinical practice
is not, at this point.
Now, whether a moratorium
would be effective,
whether one should
have a moratorium
or a ban are different questions
but I would say at least
in terms of uptake there's a
pretty significant difference
between the two.
I might be giving a
very different answer
in like 10 years but I hope not.
Does that make sense?
>> Gina, [inaudible].
>> I know but I'm [inaudible].
>> So a couple of things,
first of all, thank you both.
I appreciate your
book [inaudible].
So I was thinking
[inaudible], one is the question
of how we move the
conversation and I think
that actually education provides
us with lots of opportunities
to have that conversation
but I don't think
in many cases teachers
feel equipped.
You might've seen the
article that we just spoke
about a couple of weeks
ago about climate change,
which the vast majority of
parents across, you know,
the political spectrum, would
like their children be engaged
in issues of climate
change and then we get
to the teachers there
are a variety
of reasons why they
don't teach it.
Most of them feel ill-equipped
but also they don't have
the resources to teach it.
So I do think that there
actually is a space to sort
of move this conversation
to the classroom.
You have to think creatively
about creating some curriculum
and scaffolding it but my hunch
is that the students want to be
in the conversations anyway
[inaudible] the adults
that are the impediment.
So I think we could think
creatively about how
to [sneeze] bless you, create
a series [inaudible] scaffold
and resources we could
engage in conversations
and I think move them down to
younger folks so that they're
in the conversation early
so that it's not something
that they are scared
to go into later.
We normalize the conversation
about [inaudible] is
a huge opportunity.
>> Yeah.
>> The other one I'm thinking
about is that also the need
to destabilize this sort of
idea that we're over and done
with eugenics because I
would agree with, you know,
the both of you that there
are a tremendous number
of continuities and I'm
thinking about some very,
what would it look like
to do some very particular
studies where we look
at the relationships
between the institution
that [inaudible] promulgated
eugenic notions and thought
and actually are consistently
engaged in technology that seem
to be reproducing the same
sense of devaluation and rooted
in the same sense
of assumptions.
Because, you know, the more I
look there is no bright line
and there is no consistent
pattern
of sustaining [inaudible]
and so the intellectual
[inaudible] behind these ideas,
I would argue, still,
moving full speed ahead
with [inaudible]
maybe picked up steam.
So I'm wondering about the idea
of intervening with a series
of particular historical
case studies that might help
to draw out [inaudible].
>> I'm just going to
agree wholeheartedly.
I have the privilege of
teaching university students
and I have a lot of
hope in young people.
So I don't want to
succumb to the scare
that we can't change the
conversation and change policy
but [inaudible] that justice,
environmental justice,
or [inaudible] applications of
CRISPR and the human genome.
So I'm hanging on to hope.
Other [inaudible],
do you want to?
>> I was going [inaudible].
>> Yeah, we're going to
get [inaudible] out at 7:30
because the library closes.
So we're going to make some
closing comments [inaudible].
>> Yeah. Everything
Marsha said [laughter].
No, I guess the one
thing I would add
to what we've been saying is
a short pitch for the value
of literature, which is to
say that in disabilities
and diseases are not simply
abstractions or diagnoses
but are experienced by people
in particular places and times.
It's to literary techniques that
we need to turn to see that.
We need the best writing to help
us grasp what these conditions
mean in context.
At the same time, it's literary
techniques that are being used,
metaphor, story, and the
rest, to sell new technology.
So we need to learn to
read more critically
so that we can understand
when that spell is being cast
in a maybe not so helpful way.
>> I want to close
with sharing my thought
in social justice movements
and the Disability Rights
International [inaudible]
movement in particular.
I've been involved for
40 years in this movement
and I just did a focus group
and interviewed young people
about transportation issues
for disabled people getting
around and being able to go.
And the expectations over
my lifetime have changed
so profoundly.
People with disabilities
expect to be able to go
where everybody else goes.
Like what, yeah.
And I particularly was moved by
a high school student that I met
at a conference on
Saturday who knew her rights
under the Americans
With Disabilities Act.
Yes [inaudible].
We have come so far
in such a short time.
just, you know, within my
lifetime from the charity model,
I was hospitalized at Shriners',
which is a charity hospital
and they did the best they could
in that era, the 50s and 60s,
to a very powerful social
understanding of the nature
of disability [inaudible].
And I'm expecting in my lifetime
and I expect to live, you know,
a few more decades at least,
that the worldwide movement
for disability rights and full
inclusion is and can expect
to be continued to be one of
the most powerful movements
in the history of the
world and I believe that.
Join us. Read his
book [applause].
>> Thank you all for coming.
