Cautionary Tales: Environmental Injustice, Disability, and Chronic Illness” A Talk by Eli Clare Writer, speaker, and activist Part of the “Chemical Entanglements” …
In this return, we try to undo the damage,
wishing the damage had never happened.
Talk to anyone who does restoration, or
carpenters who rebuilt 150 year old
neglected houses,
or conservation biologists who turn the
agribusiness cornfields back to tallgrass prairies.
And they'll say it's a complex undertaking,
a fluid, responsive process,
restoration requires digging into the past, stretching toward the future, working hard in the present.
And the end results rarely if ever
match the original state.
Restoring a tallgrass prairie means rebuilding a
dynamic system that has been destroyed by
by the near extinction of bison,
the presence of cattle,
and generations of agribusiness, farming,
and fire suppression.
The goal isn't to recreate a static landscape
somehow frozen in time,
but rather to foster dynamic interdependencies,
ranging from clod of dirt to towering thunderheads,
tiny microbes to herds of bison.
Now I'm gonna pause here because I've been seeing
some flashes in conjunction with
picture-taking. I want to ask people
to turn their flashes off for now. It's fine
if you take pictures of me but while
we're in public space for reason of
access please refrain from using flashes.
If you want to take pictures of me but
need to use the flash I'm glad to spend
some time with you after the event. But
while they're in public space, for reasons of access,
please turn your flashes off.
So thank you a lot and thanks for
bearing with the interruption.
This work builds upon knowledge about and experience
with an 8,000 year old ecosystem, of
which only remnants remain.
Isolated pockets of wetlands, milkweed, burrows
and switch grass rolling in cemeteries
and on remote bluffs, somehow, miraculously, surviving.
The intention is to mirror this historical ecosystem
as closely as possible,
even though some element is bound to
be missing or different,
the return close but not complete.
I circle back to the ideology here.
Framing it as a kind of restoration reveals the most obvious and essential tenant.
First, cure requires damage.
Locating the heart entirely within human body mind,
operating as if each person were her own ecosystem.
Second, it grounds itself in the original state of being.
Relying upon the belief that what existed before is superior to what exists currently.
And finally, it seeks to return what is
damaged to that former state of being.
But for some of us, even if we accept disability as
damage to individual body mind,
These tenants quickly become tangled because
an original, non-disabled state of being doesn't exist.
How would I or the medical industrial complex
go about restoring my body mind?
The vision of me without tremoring hands
and slurred speech,
with more balance and coordination,
doesn't originate from my visceral history.
Rather, it arises from an imagination of
what I should be like,
from some definition of normal and natural.
Two, walk in the prairie.
My friend Jay and I walk in the summer rain,
through a 30-acre pocket of tall grass prairie,
that was not till long ago,
one big agribusiness cornfield.
We followed the path mowed as a firebreak.
He carried a big, flowered umbrella.
Water droplets hang on the grasses and
spider webs glint.
The bee balm hasn't blossomed yet.
He points out the numerous patches
of birch, goldenrod, and thistle.
The first two belong here, but need to be thinned out.
The thistle on the other hand,
should be entirely uprooted.
The Canada wild rye waves,
the big bluestem almost open
clusters of sunflowers brighten the
rainy day.
We paused to admire the cornflowers and asters.
The songbirds and butterflies have taken shelter,
At the moment, all is quiet. Soon my jeans are sopping wet from the knees down.
This little piece of prairie is utterly
different from a cornfield.
A whole group of people including Jay, worked for
over a decade to restore this land.
With financial and material help from Wisconsin's Department of Natural Resources.
They mowed and burned cornfield,
they broadcast seeds, sack upon sack
of the right mix that
might replicate the tall grass prairie that was once here.
They rooted out the thistle and prickly ash.
They saved money for more seed, working to
undo two centuries of environmental destruction,
reaped by proud, pasteurized
acres upon acres of soybeans and corn.
The Department of Natural Resources partners with this work precisely because the damage is so great.
Without the massive web of prairie roots
to anchor the earth,
the land now known as Wisconsin
is literally raining away.
Rain captures the topsoil, washing it from field to creek, to river to ocean.
Prairie restoration reverses this process,
both stabilizing and creating soil.
Jay and his friends worked hard,
remembering all the while,
that neither they nor the dairy farmer owned this land.
It was stolen a century and a half ago from
the eastern Dakota people.
The history of grass, dirt, bison massacre,
genocide, live here,
floating in the air, tunneling into the earth.
During my visits to see Jay, I had taken this walk
a dozen times over the last 15 years.
At noon with Sun blazing,
at dusk with fireflies lacing the grasses,
at dawn with finches and wild boars greeting the day.
My feet still feel the old cornfield furrows.
Excuse me.
As we return to the farmhouse, I think about natural and the unnatural, trying to grasp their meanings.
Is an agribusiness cornfield unnatural?
a restored prairie- excuse me.
Is an agribusiness cornfield unnatural?
A restored prairie natural?
How about the abundance of thistle,
absence of bison, those old corn furrows?
What was once normal here?
What can we consider normal now?
Or are these the wrong questions?
Maybe the earth just hoards layer upon layer of history.
Three, wishing you less pain.
You and I know each other through a loose
national network of queer disability activists,
made possible by the internet.
Online one evening, I received a message from you,
containing the cyber equivalent to a long, anguished
moan of physical pain.
You explain that you're having a bad pain day
and that it helps to acknowledge the
need to howl.
Before I logged off, I type a good night to you,
wish you a little less pain in the morning.
Later, you thank me for not
wishing you a pain-free day.
You say, the question isn't whether I'm in pain,
but rather how much.
As I get to know you in person, you tell me,
"I read medical journals hoping for a breakthrough in pain treatment that might make a difference."
You work to locate a doctor who might believe
your reports of pain.
Work to create the appropriate script,
the exact words and story
that will open the door, lead doctors to treat you
as a patient, rather than a drug seeking terminal.
Work to obtain the necessary scripts,
the actual prescription.
Work to find the right balance of narcotics.
You work and work and work some more.
The rhetoric of million
disability activists declares
there's nothing wrong with our disabled body minds
even if we differ from what's considered normal.
I have used this line myself more than once,
to which you respond, "resisting the assumption that we are wrong, broken, makes sense
but the chronic fatiguing hell pain I live with
is not a healthy variation,
not a natural body-mind difference."
I grasp at the meanings of natural and
unnatural again.
The moments and locations where disability and
chronic pain occur, can we consider them natural
as our fragile resilient human body mind
interact with the world?
And it is natural when the spine snaps after being
flung from a car or a horse?
When the brain processes information in fragmented ways after being exposed to lead, mercury, pesticides?
Can the body mind be deemed
both natural and abnormal?
I ask because I don't understand.
And when are those moments and locations of
disability and chronic pain unnatural?
As unnatural as war, toxic landfills,
child abuse, and poverty?
Four: Cautionary Tale.
And here we come thirty minutes into the talk
to the title of the talk.
Part four: Cautionary Tale.
You and I meet at a disability community event.
We end up in a long conversation about
shame and love.
You tell me that the military dumped
trichloroethylene near your childhood home.
That chemical bleaching into the ground water
and shaping your disabled body mind
as it floated into your home.
When you talk to people
about this pollution and its impact,
they most often respond with pity,
turning you and your wheelchair into a tragedy.
As you tell me this story, I think of the series of advertisements in the Sierra campaign-
the Sierra Club's campaign, Beyond Coal.
On this slide is one of the images from
that campaign
and I'll be describing the image right now.
In one, the tagline reads, "asthma,
birth defects, cancer, enough,"
superimposed over a worn,
smoke belching power plant.
And this next slide is a second ad
in that campaign.
In another, we see a big belly of a
pregnant women dressed in pink,
one hand cupping her stomach.
Her skin is light brown, her face is invisible.
Her belly is captioned, "this little bundle of joy
is now a reservoir mercury."
The fine print tells us, "mercury pollution from our nation's coal burning power plants
harm pregnant women and their unborn
children. Mercury is a powerful neurotoxin that can
damage the brain nervous system, causing common developmental problems and learning disabilities."
To persuade viewers that these plants need to shut down, both ads use disability
to make an argument about the consequences of environmental destruction.
There's so much to pull apart here
about gender and race.
The second ad relies on stereotypes about femininity and the supposed vulnerability of women and children,
and it justifies a woman of color, reducing her
to her body parts,
which is then further reduced to a reservoir.
And, at the center of the argument, is disability.
And now, on the screen is both ads
side by side, so we can be looking at both of them
and do more pulling apart of their meanings.
Seemingly, the ad asks us to act in alliance with the people most impacted by the burning of coal;
people of color and poor people who all too often work and live near environmental damage.
But digging down in that, the Sierra Club
twists away from solidarity,
focusing instead on particular kinds of body mind conditions, such as
birth defects, cancer, learning disabilities, transforming them into symbols for environmental damage.
This strategy worked because it taps into ableism.
It assumes that viewers will automatically
understand disability and
chronic illness to be a tragedy and
need of prevention and eradication,
and then this tragedy will in turn, persuade us
to join in the struggle.
Certainly, ending environmental destruction will
prevent some kind of body mind conditions.
But when using ableism, that helps inflate justice with the eradication of disability
deprives disabled and chronically ill people.
Pay for this ordinance is high.
It reduces our experiences of breathing, of living with conditions being birth defect,
of having cancer, of learning an multitude of ways to prove of injustice.
This reduction disregards ableism as a primary
location on the "problem" of disability.
It ignores the brilliant
imperfections of our lives
It declares us as unnatural as coal burning
power plants.
The price of this argument would be one thing if it occurred in isolation,
but the Sierra Club's rhetoric is only a single example
in a long line of public health campaigns
against drunk driving,
drug use, lead paint,
asbestos, unsafe sex, and on and on,
to use disability and chronic illness as a cautionary tale.
Amidst this cacophony, you want to know how to express your hatred of military pollution
without feeding the assumption that your body-mind is tragic, wrong and unnatural.
No easy answers exist. You and I talked intensely.
Both the notions and ideas are dense. We arrive at the slogan for you, I hate the military and love my body.
Undoubtedly, we could have come up with
a catchier or more complex slogan,
for sure we could have done that.
But at the same time, it lays bare an essential
question: how do we witness, name, and
resist the injustices that reshape and
damage all kinds of body mind?
Plants and animals, organic and inorganic,
non-humans and humans
while not equating disability with injustice?
So I'm switching the slides back to the image of the tallgrass prairie,
like if you saw on the title,
it's essentially so that you don't have to continue looking at the Sierra Club ads
when I finished the talk.
Though there are two more sections to the talk.
Five, yearning for the peeper pond.
Many of us mourn the vacant lot, wood and swamps we played in as children,
now transformed into landfills, strip malls and parking lots.
We fear the wide reaching impact of climate change as hurricanes grow more frequent,
glaciers melt and deserts expand.
We long for the days when bison roamed the great plains and chinook salmon swam upstream in the millions.
We desire for return.
So environmentalists, partly motivated by this longing,
have started to learn the art and science of ecological restoration.
They broadcast tall grass prairie seed, they raise and release wolves, bison, whooping cranes.
They tear up drainage tunnels and reroute water back into what used to be wetlands.
They pick up trash, blow out dams, plant trees,
hoping beyond hope that they can restore
ecosystems to some semblance
of their former selves before the white
colonialist, capitalist, industrial damage was done.
When it works, restoration can be a powerful force,
contributing to the Earth's well-being
as well as providing an [unclear].
But the damage may be irreversible.
Some ecosystems irreplaceable.
Restoration may take centuries.
Maybe a bandaid, stuck onto a gaping wound.
We may not be able to fix what has been broken.
Through all my house, on the edge of the cow pastures
there used to be a little swampy pond
surrounded by cattails,
where in the early spring, just before the ice melted, hundreds of peepers would breed.
These small, light brown frogs would sing through the night.
Sometimes I'd walk to the pond and stand for 10 or 15 minutes,
surrounded by their chorus, eardrums and chest reverberating, shoes growing soggy.
Two summers ago, neighbors built a house down there.
I watched the structure go up, but didn't register what it might mean for the peepers.
Last spring I headed down to the pond as usual.
Trudging through the upper field, then the hedgerow, coming out on the western edge of the cow pastures.
But there was no pond, no chorus of peepers
falling silent as I approached.
I wandered around for a while, feeling disoriented
before I realized that my neighbors backyard was exactly where the peeper pond used to be.
It's a tiny loss in the scheme of things,
this patch of land occupying Abenaki territory,
has endured so much ecological change in the almost four centuries since white people have stolen it.
We've clear cut it three times, fenced it with stone walls, hedgerows, barbed wire.
Planted grass, put sheep and cows out to graze, built houses and barns and wetlands.
Created manure piles, dug wells for water, leaked gas,
made garbage heaps of wire, glass, mattresses, tires, railroad tracks, bulldozed roads.
More than enough damage has been done,
and yet, many native plants and animals are somehow doing well, including the peepers.
Still, I miss this particular peeper pond, yearning to stand again at it's edge listening.
There's no return to the time before my neighbors house, before the cows and sheep, before white people arrived.
Instead I carry these losses with me.
I'm slowly learning the importance of bearing witness,
acquired daily recognition so different
from the desire to repair.
I let these losses sit uncomfortably in my heart,
and at the same time I walk in the woods, I recycle,
I take to the streets to shut down the natural gas pipeline
that the Vermont gas wants to build not far from here.
I remembered that the Abenaki nation has not damaged.
Four bands, making home on the land currently known as Vermont.
They've relearned old traditions and they're creating new ones.
They've gained recognition from the state government.
They've acquired in recent years several pieces of land.
One of them an old burial site, and another a sacred spot they've frequented for thousands of years.
They join indigenous peoples from all over the world
in finding not only ways to survive,
to cultivate well being, to defend their sovereignty.
And still, there's no return to the past.
Six, and this is the last section of the talk,
called jostling my anti-cure politics.
I have worn brandished and vehement anti-cure politic
to defend myself from the unending
insertion about disability
equals damage, lack of health, defect.
In one i write,
and this comes by my first book, Exile and Pride: Disability, Queerness and Liberation
In one [unclear], I write "Rather than a medical cure,
we want civil rights, equal access, gainful employment, the opportunity to live independently
good and respectful health care, desegregated education.
Needless to say, a cure is not high on our list."
In direct response, and I know very clearly this is direct response to the quote I just ran
In direct response, one queer, disabled, and chronically ill writer, Peggy Munson states,
"this politics that not apply to those of us
who seek treatment or cure and only
viable accommodation that would
allow us back into society.
I expect to gain in a place beyond with a
watching hours of reality because
reality has become like an
interesting form, fiction to me. I am too
sick to have women attend in the school
or independently without treatment or cure." I could quibble about
treatment versus cure, protest by saying
I've never been anti-treatment but in
actuality when anti-cure politics had
all too often shunned out chronically ill people.
I need to say of Peggy Munson's words.
I listened to a cancer survivor who says,
"I'm not at war with my body,
but at the same time, I won't possibly let
my cancer cells have their way with me."
I listened to my friend, for whom a pain-free day
doesn't exist, she says,
"The chronic fatiguing, hell pain I live with is not healthy."
I listen to a power tracer
who told me recently,
"my wheelchair is part of me that I wouldn't
give up, but my lungs that threatened to
kill me every time when I get cold, I
would trade them in for a feathered hair
without a second thought."
I let their voices jostle my anti-cure politics.
As I listen, I feel the lived experiences
of illness, disorder,
debilitating pain and exhaustion.
The moment when disability is and truth
went to be unhealthy, they asked me
to pay attention.
Disabled feminist thinker Susan
Mundo writes, "some unhealthy disabled
people express physical and
psychological burdens that no amount of
social justice can illuminate.
Therefore, some very much wanted [unclear]
cure, not as a substitute for
curing people but in addition to it."
She insists on all [unclear] reality, refusing disability politics that denies illness.
All too often, even the disability community,
chronically ill people hear,
"You don't seem sick. You can't be sick again.
It's all in your head."
[unclear] when those words jostle me too.
Amidst these voices, I think again of the Sierra Club's ads,
which well, leveraging abelist fear
also make important connections
between environmental destruction in the
illness. It tells us unequivocally, pay attention!
Burning coal causes cancer [unclear].
Frustratingly, in its chronic form
environmental message also transform
illness into a symbol.
However, I can imagine a slightly difference during
the billboards and commercials and the
green are broad-based my leadership
politics of chronic illness and disability.
They were [unclear] injustice in many places
all at once.
Coal burning and extracting fossil fuels from the
ground and poisoning the planet and the many beings
that made home here, including humans.
The racist and the classist force poor people
and the people of color who live and work
near environmental destruction.
Cancer and asthma would become not symbols,
but lived reality amidst injustice.
You think that's broad-based marquee issue politic
of the gaim, the restoration
doesn't only involve the youth of medical
technology to repair both lungs and return us
breathing to normal or to stop the ravages of cancer and wounds in the body and create permanent remissions.
Cure also requires dismantling
racism, poverty, and environmental injustice.
And let health and cure take on multiple meanings.
At the same time, in a world saturated with
ableism, it's difficult to acknowledge the
connections between disability, chronic
illness, and injustice and also holding onto
the inherent value of disabled and chronically ill people.
For your future, where everyone has
healthcare that promotes
well-being and self-determination,
enough nourishing food to eat, access to
clean, plentiful water and
warm, dry, safe places to live.
I long for a time after we've stopped
spewing tens of thousands of human made toxins,
clean up garbage dumps
radiation and oil spills, put an end to
body mind breaking work conditions.
I'm desperate for a world where war and
terrorism and genocide no longer exist and colonialist nations are making ongoing reparations.
In this imagined future, the body mind differences
we now call disability and chronic illness,
will be diminished, some of them eradicated.
Yet humans are too fragile, and the world too unpredictable for disabled and sick people to disappear.
And if we did, what a loss that would be.
And let this moment [unclear] relationships we have with disability, illness, suffering, and cure jostle me.
Knowing that I need this exact tangle of conflicting and overlapping conversations
coordinate all sickness and human vulnerability,
health and disability, the need for rejection of cure,
is much harder work than writing in the cure [unclear] and much more necessary.
Thank you.

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