The Hastings Center
Questioning Cure: Disability, Identity & Healing
Tuesday, May 11, 2021

Liz Bowen:  Hello to everyone already logged in.  We have about 19 people hanging out at this point. 

We're going to start on time at 3:00.  We accidentally started the broadcast a little bit early. 

Someone apologized in the chat.  No need to apologize! 

Erik Parens:  We're happy to have such enthusiasm about the event. 

[Participants discussing logistics with each other]

Liz Bowen:  Hello to everyone who has already logged in.  We started broadcasting a little early accidentally.  Thank you for your patience.  We will start in a second. 

Hi, everyone who is joining us.  We'll wait for people to continue filing in.  We'll start in a few minutes. 

Hi if you've just joined us.  We're giving people a few minutes to finish joining.  A lot of people are registered.  We'll start a minute or two after 3:00. 

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Liz, do you want to add yourself as a spotlight in addition to the interpreters? 

Liz Bowen:  Yes, thank you for reminding me. 

Hi, everyone, who is just filing in.  We'll start in one minute. 

Okay.  Go ahead and get started. 

Hi, everyone.  Welcome to Questioning Cure: Disability, Identity, and Healing.  I'm Liz Bowen, the Rice Family fellow in bioethics and humanities at the Hastings Center.  I'm the artistic director in the series of the Art of Flourishing. 

Along with my co-organizers, Erik Parens, Joel Michael Reynolds, and Rosemarie Garland-Thomson. 

I will start us off with an access note.  I will start with a visual description.  On the screen is a title card with a green background with today's speakers, Anand Prahlad, Karen Nakamura, and Ann Millett-Gallant. 

The slide says to use the Q&A function to ask questions.  Thanks to the National Endowment of the Humanities for its generous support of this series. 

I am a white woman with brown hair past my shoulders.  There is a white wall behind me.  As you can hopefully see on your screen, today's webinar has live captioning and ASL interpretation available.  You can turn on the captioning using the closed captioning or CC button at the bottom of your screen. 

The link to the full transcript will be posted in the chat.  Sometimes in screen share mode like right now, the speakers' and interpreters' boxes can be small and hard to see.  You should be able to make them bigger by dragging the dividing bar between the slide and the gallery of images.  You can make those a size that works for you. 

We recommend watching this on a computer screen rather than a mobile device if possible, for maximum accessibility.  If you are having trouble with these features during the event, use the Q&A button to let us know.  We won't be using the Raise Hand function today. 

Today's event is being recorded and posted to the Hastings Center website along with a link to the full transcript.  We have about 800 registrants today.  We have to keep the chat closed for security purposes. 

If you have questions for today's panelists,  We encourage you to submit them through the Q&A function at the bottom of your screen.  The whole second of our event today will be dedicated to audience questions. 

We may not be able to get to all of the questions, but we'll try our hardest.  With that, I will turn things over to Erik Parens, who is director of the Hastings Centers National Endowment initiative on bioethics and the humanities. 

Erik Parens:  Thank you, Liz Bowen, for your invaluable substantive and technical contributions to the creation of this event.  Thank you to all of you for joining this fourth public conversation in our series, the Art of Flourishing, conversations on disability. 

The purpose of this series is to broadcast and explore one fundamental theme, which is that people can flourish in all sorts of body-minds.  To flourish here means to exercise the capacities we have in pursuit of the goals that we find meaningful. 

None of us needs a different body-mind to flourish.  What we need are more supportive environments. 

No one has articulated our theme more powerfully than Rosemarie Garland-Thomson, who is a pioneering disabilities studies scholar.  She is also a bioethicist, a senior advisor to the Hastings Center, and the senior consultant to this series. 

Joel Michael Reynolds, who is a co-director of this series, was the inaugural Rice Family post doctoral fellow at the Hastings Center and now at Georgetown teaching disability studies and bioethics. 

Scholars at the Hastings Center have frequently critiqued the institution of medicine.  One of the center's founding fellows, Erik Cassell, argued that a fundamental problem with the institution of medicine is that it too often harbors a reductive mechanistic perception of persons. 

If physicians were truly healers, they needed a more holistic conception of persons.  Rather than view patients as bodies that are in pain and need fixing or core, Cassell thought patients should be viewed as persons who have experiences and need care. 

Cassell argued to make the transition from being glorified mechanics to being healers, physicians needed to listen to patients and take them at their word when they reported what their experiences were like. 

This bioethical critique of medicine emerged at the same time people with disabilities were demanding that their experiences be listened to.  That is, the bioethical critique of the institution of medicine arose around the same time as the disability critique of the medical model of disability. 

As everyone here today knows very well, according to the disability critique, most of the problems that disabled people experience are rooted not in the brokenness or atypicality of individual bodies but rather in the unjust, unaccommodating structure of our society. 

My point is that Hastings style bioethicists and disability theorists and activists have a shared commitment to questioning cure. 

It is not that any of us is in principle against cure.  It is that we are for distinguishing between real cures on the one hand and poisons that masquerade as cures on the other hand. 

We are for remembering that when real cures are not possible or desired, healing still can be possible.  And we are for remembering that the tools that the institution of medicine can offer are often not the tools that disabled people need to promote their flourishing. 

Our first speaker Anand Prahlad is a distinguished professor of English at the University of Missouri.  Folklorist and author of the memoir The Secret Life of a Black Aspie.

He describes that in a society that's racist to be black is to be traumatized and disabled.  In a society based on neurotypicality, to be autistic is to be disabled. 

According to Prahlad, the same ableist society creating the disabilities also manufactures a "cure" that is in fact a poison.  For those who didn't see them, I put scare quotes around the word "cure." 

The poisonous cure is either to conform to norms of whiteness and typicality or to disappear.  Rejecting the poisonous cure, Prahlad describes genuine healing. 

Ann Millett-Gallant is the author of Re-Membering: Putting Mind and Body Back Together After Traumatic Brain Injury.  She suffered traumatic brain injury.  In her remarks she uses cure without quotes and suggests how even a true cure is importantly different from healing.  While Ann would have welcomed being cured of the distressing symptoms from her traumatic brain injury, cure of the symptoms wasn't possible.  But what was possible was to heal.  It was possible for her, enmeshed in her community and engaged in her work to heal in her way. 

Karen Nakamura is an anthropologist at UC Berkeley and she'll speak on how the idea of cure is wholly irrelevant to someone's ability to flourish.  Rather than needing any cure Karen speaks on disabled people needing tools to hack environments not built for neuroatypical bodies.  It's not bodies that need to change but unsupportive environments that need to change. 

After remarks Rosemarie Garland-Thomson will facilitate remarks and and then a facilitation of remarks from all of you.  Now over to Prahlad. 

Anand Prahlad:  Thank you.  I'm in a black man's body.  I am dark skinned.  I have a hat my dreadlocks are tucked under.  I'm against the background of an orange wall with white paint at the bottom. 

I'll speak briefly on my disabilities to put the rest of my comments into perspective.  All my disabilities are socially imagined or engineered by white American institutions.  My first disability is my blackness.  Since the 15th century, the incursion of Europeans into Africa and the slave trade constructed blackness as a racial impairment.  Thus a form of ableism.  Post traumatic slave syndrome affects most people of African descent in the western hemisphere. 

Third is my ongoing PTSD from ongoing racial abuse. 

Fourth disability is my autism.  Like many of my background I think of curing disability as a fairytale spun by white institutions by the masses.  Like the ugly beast kissed by the princess, turned into a prince.  It offers false promises.  Invites us to think of disability as an individual issue.  And not thinking of it as a systemic problem.  Fixing us and conforming to a white, so called normal. 

Cure is as much about culture as about medicine and health.  Meanwhile some of us are so different, society deems us irredeemable, too broken to be fixed, too different from the white normal.  For us the cure is exile, genocide, eugenics.  The goal is to cure society of us, more than to treat what ails our minds, spirits, bodies. 

I remember as a child growing up in rural Virginia a stone's throw from where my ancestors were slaves in segregation, we had little access to healthcare and natural remedies.  Exiled from white society except as housekeepers and nannies, dspslb.   In the hospital, people were experimenting on bodies of black men, women, children.  Using them as lab rats for treatments that would ironically be denied to those like them. 

Many things have changed since segregation officially ended but many things have not.  Large percentages of black disabled people and perhaps disabled people in general, flourishing is as elusive as it ever was.  Under slavery, black people found ways to subvert the system and take care of themselves, maintain positive self identities.  

We've continued to do so.  But the enslaved are still enslaved, in many ways our modern lives are shaped by oppression.  The way is inhumane, and values money over human dignity and wellbeing.  Perpetuates most superficial ideas of beauty, dismisses concern with developing inner life. 

Still we survive, subvert, sometimes achieve and excel.  But how often do we truly flourish?  To use myself as example.  I've been able to have career, family, be fairly successful as an author and scholar.  But in my 67 years on earth I haven't had a day I felt safe, where I didn't feel anxious, where I didn't look over my shoulder, where I didn't reel from generational and present day trama.  Where I didn't lost my grip on ability to function and fear of being homeless.  Every day I feel health deteriorating due to stigma from my disabilities.  

Ableism is a leading cause of mental illness amount black people and major reason for short life expectancies.  This is true for many forms of disability.  I have moments I flourish certainly.  But I weigh it against months, years of debilitating distress.  It's not enough to survive and bits of dignity here and there. 

Dignity and right to flourish are for everyone, not moments with endless battles.  But as givens, from moment of birth til we exit this plane of existence.  We don't have the luxury to wait for change.  If the system isn't transformed we'll face economic, social collapse leading to widespread suffering, despair.  As always those of us most vulnerable suffer most and are considered most expendable. 

We need to imagine a different society and world.  Where community and understanding connecting with each other and nature are the rules not the exceptions.  To do this we have to throw away the book of white capitalist fairytales and make a different vision.  That human beings are strong.  They can do amazing things with minds and bodies.  Withstand conditions and face obstacles.  

The truth is different.  Humans are fragile, they break easily, have difficult time facing problems, they elevate physical and technological achievements above quality of being. 

We need to create stories where the achievements happen most in our hearts, spirits, minds.  Old stories show people as individuals.  The self made man pulling himself up from the bootstraps.  This is a fairytale.  If you use myself as a disabled person with senses overlapped, with also a sense of empathy.  

I don't have a sense of kindness considered normally.   My idea is not just about people but the nature around me.  Birds, trees.  I'm the cardinal singing outside my window in the morning.  The cardinal is me.  That's why I can't imagine flourishing as an individual thing.  How can I flourish if my brothers and sisters are in pain?  If bees and butterflies are dying? 

Our new stories have to reflect interconnectedness of all forms, that our wellbeing depends on the wellbeing of all.  In the end, society really needs to be cured.  The society in which for example, sadistic personality disorders, delusional disorders are considered normal, admired.  Where many fall under spell of ableist fairytales that show the narrowest ideas of beauty, rationalize the bullying of those different, and celebrate most superficial notions of what it means to be human.  For now, those of us in society's eyes different, will fight for change, and envision a society and world where fundamental healing is more a focus, than cure. 

Liz Bowen:  This a Liz.  We'll move to Ann Millett-Gallant next.  Thank you Prahlad. 

You are muted Ann. 

Are your slides up? 

Ann Millett-Gallant:  They'll be up in one second. 

My identity as disabled is multifaceted.  Such terminology points do not describe my physiology.  I'm further privileged as a white academic, with PhD in art history, and published on art and visual culture.  With strong support systems.  Others compliment my adaptability and positive attitude.  I'm someone who knew myself well.  And saw myself as a bright light in all my projects.  In San Francisco, I lost control of driving, and I crashed down on my head.  Luckily, I was close to the nearby hospital.  My sister stated someone told her if I was taken elsewhere, no one would have tried saving me. 

When I was at the hospital I was within 20 minutes of dying.  I have asked on the traumatic effects of brain injury.  Because of the effects.  And the inconceivability to most people of trauma.  It was healed, not cured.  This distinction is crucial.  It relates to the imaginary state of wellness.  I suffer unbearable muscle spasms, lack of sleep, and other sensations.  I have documented signs and my records, and time spent in hospitals, and physical therapy, comprises my trauma story.  In 2017 I self published a memoir.  Using art therapy, and created art work. 

With mental and physical differences, with academic and personal writing, and multimedia colleges, on campus.  Painting, drawing, collaging, enables me to explore the tension I felt from the accident. 

Next slide.

Neurologists state anxiety and depression are most frequent results.   Sleep disturbances and loss of self confidence.  I healed many wounds.  Collages helped me show this in visible form.  This helped me show my experience in tangible artistic form.  Trauma can't be expressed in words given its complex nature.  The multiplicity of outcomes and consequences of it are dependent on community resources. 

After impact, I was comatose for 6 weeks.  I somehow decided to survive.  The goals of therapy are to heal rather than to cure.  Making art, storytelling, and analyzing my artwork did not erase my traumatic past but rather helped me cope with my new impairments. 

I traveled from San Francisco to Columbus, Ohio.  My father liquidated my savings and investments carefully so I could qualify for Medicaid disability insurance.   A journalist published a human interest story about me that featured a large close up of my face.  In 2010, I found it and felt startled.  I looked like a deer caught in headlights. 

I recreated the photograph with ink and white-out.  This image is now on the screen.  Next slide. 

For today, I collaged three printed images of my paintings from the past 11 years.   My depiction of an inside/outside view of my brain after it was severed is left justified.  An exterior depiction of my cranium with the image of a red cabbage cut in half whose intercorrelated ridges resemble the inside of my brain rests on it.  Cabbage is an offensive name that chastises people who are not normal. 

Others' analysis of my experiences such as you are just like how everyone loses their minds as they age makes me defensive.  Sometimes I turn these interactions into touchable moments.  Other times I reply no.  Contrasting with others' deadpan assertions, my cabbage is bejeweled and adorned with a ghoulish dancing center or heart.  Next I adhered a painting inspired by my perception of a documentary film My Beautiful Broken Brain.  This image of two shapes in blue hues floating on a rosy background includes a cat and a brain and face. 

This represents my anxiety and my lingering lung. 

It references my relationships with other mothers.  Craft paper with rosy pooka dots frames the three images adding elements of whimsy and delight.  These borders overlap cerebrally and mystically. 

The collage stages three self-representations and links them to articulate my multidimensional journeys.  This trio references self-care, care, and interdependence.  I will never be cured but I now have the tools I need to feel healed. 

It is my pleasure to hand it over to Karen Nakamura. 

Karen Nakamura:  Hi, everyone.  Thank you for coming.  I'm honored to be here.  Today, I would like to talk about what I see as the crip’s dilemma, whether we cure ourselves or hack the world. 

The cure and the three C's.  Why are disabled people so hesitant about the cure?  Perhaps because it always seems to invoke other C's.  Control.  Compliance.  Conformity. 

We can perhaps see this most aptly in psycho pharmaceuticals used to control people with psychiatric disabilities such as myself.  These drugs are often forced into us for compliance and monitored.  The drug therapy is to conform to social standards rather than alleviation of our own pain. 

Think of the cochlear implantation of two year olds.  Control, compliance, and conformity are offered not only in the implementation of the cochlear implant but also the speech protocols.  Signing is forbidden. 

To take the cure, we have to accept the control of normative medicine.  Be compliant and conform.  Is this really too much to ask? 

In the end, most of us learn that the way of the cure is futile.  Whatever we do to try to conform, we will always stick out and be the other.  A scholar talks about the forestalled nature of the cure always being presented as just over the hill.  Six months.  Two years.  Ten years. 

If we can just be patient and wait for it, we might find it.  I think we've been patient and been patients for too long.  We know the false promises of the cure.  We can wait but it will never come. 

We are always already human and post human.  In the social sciences and humanities today, it's fashionable to talk about the turn toward post humanism, tearing down the divide between the human and non human.  Whether that's cyborg bodies or the symbiosis of our microbiomes. 

Crips have already known we are already human and post human.  In 1995, two months after his friend's death, Mike Boyd dropped off Ed Roberts' wheelchair on the doorstep of the Smithsonian castle in Washington, D.C. 

Ed's chair revealed the marks and dents of the many battles this activist fought for his own civil rights and others'.  It became part of the national collection along with Washington's dentures. 

I like to think the comparison is fitting.  Ed's chair was part of his body, like George's teeth.  And Ed's chair was designed to be part of his body.  It had a portable respirator and portable ramp.  Straps to keep his upper body stabilized.  And joystick. 

Anyone else in the chair would feel like they had George's teeth in their mouth.  Engineering at home, cripping space.  Every disabled person is an engineer is a philosophy on a website.  It chronicles Cindy who had a quadruple amputation.  There are ways to pour out laundry detergent.  They're creative. 

We are all engineers and designers.  The world is not designed for us and our needs.  We have to engage in hacks using canes to operate elevator buttons, putting tactile dots on our appliances, letting our service dogs carry our meds to remind us to take them. 

Architect Jonah Keller and Crip scholar has talked about hacking spaces in ways that the neurotypical designer never imagined.  We find the hidden light switches, the nooks, the doors that are not locked and the underground paths. 

Deaf spaces.  Gallaudet University is the only four-year university for deaf students.  Its campus was designed by Olmstead in 1856.  It looks like almost any other college campus in the Northeast at a time when it was important to stress that deaf students could attend college. 

By the end of the 20th century, times have changed.  In 1988, the Deaf Now movement had installed a deaf man as president of Gallaudet.  In the 1990s the Americans with Disabilities Act ensured everyone could go to college. 

In the background, defenses had become partly cured.  The 1988 DPM movement had been caused by the epidemiological bubble of deaf kids created by a rubella epidemic.  The vaccine ensured there would be no more future demographic bubbles. 

Genetic causes were reduced.  And cochlear implant technology took care of much of the rest.  Gallaudet faced a shrinking population of students.  In 2005, architect Hansel Bauman and a cohort of five deaf scholars coordinated the Deaf Space Project. 

It made a manifesto about how signing deaf people occupy space and used it to change hallways, common spaces, elevators, slopes, paths, classrooms, offices, and even walls were designed and created. 

In this paper, I've talked about the difference between curing and hacking space.  But what of mad activists?  As a mad activist and scholar, I wonder how this cure hacking dilemma applies to us?  We have a much more troubled relationship with biomedicine than some of our more physically and intellectually disabled kin. 

I was fairly anti pharma.  I refused to take the pills.  But the world is equally toxic.  Psycho pharma does make it easier to live.  Thus our dilemma.  Is it just compliance, conformity, and control?  Or are they also the wheelchairs and canes that let us navigate the world around us and make it tolerable? 

How can we mad activists work to rework the built-in environment and social institutions so we don't have to constantly take this false cure?  We're still at the beginning of our movement and I have few answers. 

As an anthropologist, I wonder if archaeologists thousands of years from now will know that disabled people existed.  A friend talks about going to a museum and recognizing one of the skeletons on display having the same type of scoliosis as her.  Sometimes disabilities are visible but what about the artifacts we leave behind? 

The new Gallaudet redesigned as deaf space will suddenly be visible if the archaeologists know what to look for.  What about other spaces? 

There is a wonderful story about going through the home of a mysterious benefactor who left SF Lighthouse millions of dollars.  He recognized the house as that of a person slowly going blind.  The tactile art.  The bright lamps.  The large television screens in odd spaces. 

Would these details be apparent to our future archaeologists?  Or only if they were blind?  I wonder what the traces we leave behind will be? 

My invisible audience behind the Zoom screen, reject the cure.  Try to hack the space.  Leave traces behind.  Be remembered.  Thank you. 

Erik Parens:  Rosemarie, I believe we're turning it over to you to facilitate the conversation. 

Rosemarie Garland-Thomson:  Thank you very much for these three wonderful presentations. 

I have a few questions that are prompts for discussion amongst the three panelists.  I would invite you all to participate together in a conversation.  The first question I wanted to put forward is this one. 

People with disabilities who have managed to flourish and to live lives that most of us would consider to be good are often described as being strong. 

I'm using that in air quotes.  I was struck by the contrast of the stereotype between strong disabled people and Prahlad's point which seems very true.  Human beings are incredibly fragile. 

How can we talk about flourishing as we have experienced it in our own lives?  How can we understand that in relation to this fact of human fragility?  Anyone want to begin? 

Ann Millett-Gallant:  Hi. 

Rosemarie Garland-Thomson:  We have your voice, Ann. 

Ann Millett-Gallant:  People say you're strong because you've overcome so many things.  I've overcome architecture or environments or structures that don't address me.  Doctors that haven't treated me. 

[Audio cut out]

Rosemarie Garland-Thomson:  We lost you, Ann. 

Karen Nakamura:  I think her connection dropped entirely.  I don't see her in the participant list. 

Rosemarie Garland-Thomson:  It's a hard technological environment, Karen.  My own Internet just faded out.  I had to get back in again. 

Perhaps, Prahlad and Karen would like to comment on this supposed conflict between the idea of strong and the human fragility that Prahlad mentioned to us that is part of what structures our existence. 

Anand Prahlad:  I'll try to comment on it.  When I think of stress and when I'm talking about stress in my talk, I am referencing the way people tend to think of stress and what they tend to think of as strong. 

You're strong if you can lift 500 pounds.  Or you're strong if you can endure a certain amount of pain.  Or you're strong if you can not show your emotions. 

As I'm thinking about it and talking about it, I'm thinking about talking about strength in a different way.  Our bodies are fragile.  We don't have fur.  If you dropped us off at the North Pole naked, we would die.  We are so susceptible to so many things.  Environmental things, nature things. 

And it doesn't take a lot, really, to cause harm to a human body or a human mind or a human spirit.  In some cases it takes very little.  That's sort of what I mean when I say we're fragile.  I'm suggesting we think of strength in different ways than it's typically thought of.  For example, it takes strength to try to understand yourself, for example. 

It takes strength to look at your fear.  Those are things I suggest are more meaningful ways to be strong than ways people typically think about it. 

Rosemarie Garland-Thomson:  You were interrupted by technology Ann.  Would you like to continue thinking about strength and strong, and Prahlad's idea that humans are essentially fragile? 

Ann Millett-Gallant:  Yes we wound, physically and emotionally.  The idea of cures is about transformation from ill, disabled to nondisabled and healthy.  It's a continuum, all of the things we deal with, we can heal some things for ourselves, and erasing trauma from your life isn't possible.  Or just to ignore it.  The traumas we all go through. 

It's hard to go to therapy.  I chose art therapy because I liked art and I was an artist.  Some of our ways of dealing with pain are through different ways than just medicine or exercises or whatever is prescribed. 

Rosemarie Garland-Thomson:  Did you care to comment Karen? 

Karen Nakamura:  With being strong it's often described as "oh wow you were strong to deal with the challenges presented to you."  I live with survivor's guilt.  Many more people much more talented, much stronger, they didn't survive. 

And it was more luck than anything inherent in myself that has allowed me to come to this point.  So I don't like the language of strength.  It implies something inherent in that. 

A whole bunch of us walked across this minefield and a great number of us got decimated, does it mean something more about us that made it?  No. 

It's society that created that minefield, that environment that makes it so hard for us to exist.  By praising the survivors, "it's so great you passed that minefield."  You could have not put it there so all of us could come across. 

Anand Prahlad:  Amen to that. 

Rosemarie Garland-Thomson:  All your presentations put forward the need for a sustainable sustaining environment for all human beings to live in.  For people with disabilities, the sustaining environment requires more, distinctive tools, to use Karen's concept.  Tools in the very broadest sense.  The kind of tools that might be technologies.  But the kind of tools that might be, and Prahlad suggested this, other living beings. 

For Ann the kinds of tools consisting of making art, all part of a larger sustaining environment that has allowed those of us who have flourished to flourish. 

I wanted to suggest taking our conversation in another direction.  That is the presentations here offered to us affirm that it is less us, our bodies and minds that need to be cured.  But rather that society needs to be cured.  Karen's concept of compliance, control, conformity, that lovely alliterative idea is crucial.  Curing society rather than curing us, our bodies and minds. 

Could each of you talk more about what kinds of social curing?  What elements of society need to be cured in order for us to flourish more effectively in the world we live in? 

Karen Nakamura:  I'll jump in, just for a start.  When I was teaching two years ago, disabled students said one of the hardest things especially in the community of people with low energy, we call ourselves the spoonie community, it is hard to get to class. 

People have begged for years, why can't we have a Zoom option, why doesn't office technology make it easier?   Always it was, it would impossible to do that.  Then a global pandemic hits, then hey everyone can go to Zoom.  Same with the faculty meetings.  Why can't we participate with Zoom?  Then hey, we can! 

All these possibilities open.  Now people talk about going to the old ways.  Looking forward to in person meetings and classrooms.  For sure, for some people that is the more accessibility option. 

We've already seen a bit of the possibilities.  I find Zoom very tiring.  Especially speaking Zoom where I need the video up.  I like Zoom meetings where everyone is on chat.  It's not really Zoom but Twitter.  We saw possibilities that society can change, but only when it affects the majority of people.  But now we see it's possible. 

Ann Millett-Gallant:  Many access needs are medicalized, I need to see a specialist to get a new wheelchair.  That is an inconvenience to me.  I need to renew my disability license plate and do certain paperwork, and mail in that.  A lot of these things turn into a huge hassle.  It's clear that some in home presenting is good.  But travel has gotten even harder.  People are so packed in together and it's so rushed.  That makes it difficult.  A lot of things with access can be difficult.  It is not one solution for all people, I suppose. 

Rosemarie Garland-Thomson:  You're suggesting society can be cured by a different distribution of resources?  I think we are all saying that.  And a different set of priorities on how we literally build and fund together. 

Karen Nakamura:  One reason I like teaching large classes, and I'll get at least a few students who go on to change the world.  Who have the resources and privilege.  I want to sensitize them, to start thinking of those things.  And some crips will do it too.  Maybe with those positions we'll have drugs that aren't toxic, that don't shorten our lifespan to exist.  Maybe someone at an insurance company with the brilliant idea someone needs more than one wheelchair for when you need a new one.  Or a powerchair that works in the rain.  All these innovative thoughts.  We need to be in those positions to do that. 

Rosemarie Garland-Thomson:  One of the terms Erik offered us is on genuine healing, a productive concept.  How would you describe genuine healing?  It seems to me it's about understanding people with disabilities and illnesses much more than our diagnostic categories.  To be seen more as whole people rather than broken people.  That difficult metaphor of broken and fixed. 

And this seems important, what all three of you said, people with dignity that others in the world can recognize.  It seems to me the kind of dignity we as people with disabilities try to describe in our own work and try to elicit is a particular kind of dignity that asks to be recognized in distinctive ways.  I wondered if any or all of you have something to say on what this genuine healing might be like.  In your world. 

Anand Prahlad:  I'll say something on that one.  I'm also flashing back to the previous two conversations where I didn't say anything because I didn't know what I thought.  This helps me figure out what I'm actually thinking. 

I have a hard time thinking of the issues you're mentioning in isolation from the society in general. 

So I was thinking OK, what kind of technology or tool would help an autistic person function better in the world.  There are some things I can think of. 

Those tools might serve a few autistic people.  But then you would still have a society that was full of intolerant, insensitive people who weren't willing to grant an autistic person dignity or space.  Or to think of them with the same consideration that they would with someone who was not autistic. 

So if I'm that person, and I have to go to work everyday, and at my job I have a tool.  Like a quiet room I can go to.  Well at the grocery store there's no quiet room.  At the store there's no quiet room.  I'm still living in a society where if I leave my home, I'm sort of being the subject of microaggressions and certain forms of abuse. 

For me it comes back to more holistic answer to those questions than just what might be a tool or technology or environment that might help me. 

I can go walking in the woods.  Because I'm fortunate enough to live in a place where I can go walking in the woods, where there are woods.  But an autistic person living in an inner city, especially in say an impoverished neighborhood, they can't go walking in the woods.  In fact, if that person is black, if they go walking at all, they can get shot. 

When you ask the question, how would I imagine healing taking place for me, the first thing that comes to my mind would be, cure all those people out there.  

That would allow me the space to actually focus on my own healing rather than using all my energy just to cope with a hostile environment.  

I can go to a retreat.  But I can't live at a retreat.  Does that make sense? 

Rosemarie Garland-Thomson:  I think that's a good place to end--

Karen Nakamura:  I have a thought.  One small thought.  This was a little bit cut out of the original paper.  But one of my friends, a disability activist in Japan, Shinji Katota [sp?] says to envision a world where when a child who's born who's disabled, the friends of the parents instead of pitying congratulate.  Isn't that what parents what.  Children who make the world a better place.  Disabled people make the world a better place.  

Where we go, ramps get built, quiet rooms at conferences get made, visible fire alarms get installed, all the activism we have done.  Closed caption television.  Closed captions appear.  All the activism we've done in the last 60 years made the world a better place.  We need to acknowledge that and need able-bodied people to acknowledge that we are the ones who bring these changes onto society. 

Again, so when a disabled person is brought forth into the world, we celebrate that as the marvelous occasion for someone who has that potential for change. 

Rosemarie Garland-Thomson:  Thank you, Karen.  You just offered the best hack I've heard in a long time.  You just hacked a gender reveal party to bring up the idea of a disability reveal party, which would be exactly what you just described. 

People could start making cakes and all sorts of technological apparatuses to celebrate. 

Anand Prahlad:  When is this party happening? 

Ann Millett-Gallant:  We all need to be invited. 

Rosemarie Garland-Thomson:  Tomorrow.  We'll get the NEH to sponsor the whole thing [Laughter.] 

Thank you so much.  We can move on to the next part of the program now.  Joel, are you there? 

Joel Michael Reynolds:  I am here.  Can everyone hear me okay?  I'm going to keep talking.  If something is going wrong, please interrupt me. 

We are moving on to the section of this event that takes questions from the audience.  As has happened with our past events, we have a wonderful set of questions.  Sadly, we will not be able to get to all of them. 

I encourage everyone who is watching to please continue this conversation on Twitter, Facebook, etc.  Feel free to email any of us. 

We are excited to keep this going beyond the event to talk and think together about these questions, issues, and concerns. 

The first question from the audience that I will pose to any and all of the panelists who would like to respond comes from Lizette.  I hope I'm pronouncing your name correctly. 

Lisette writes, my brilliant disabled friend Naomi Ortiz shares a story in her book called Sustaining Spirit about how a friend taught the difference between healing and mending. 

Mending is not a return to your previous state but rather a transformation of yourself where the wound may or may not be there anymore, but you are no longer who you once were. 

Is there a place for mending on the path to flourishing? 

Anand Prahlad:  I was just asking Joel to read the definition of mending again. 

Joel Michael Reynolds:  Lisette writes:  Mending is not a return to your previous state but rather a transformation of yourself.  A transformation that occurs even if the wound is now no longer there. 

I can tell it's a good question because we're thinking about it.  [Laughter]

Ann Millett-Gallant:  In my case, I still have a lot of wounds that are visible.  Because of what I went through, I can't use plastic legs anymore.  In another way, I had so many problems with my knees.  It is much more comfortable and less painful to not use them at all. 

At first, I thought I was losing something but then I became more comfortable doing things without them.  In that way, I mended in that way.  I just altered my perspective in how I did things.  I stopped feeling uncomfortable being on the floor around people.  That was a way of mending for me. 

Karen Nakamura:  In terms of psychiatric disabilities, I don't know what healing and mending are.  All of the cures we've been offered tamp down the symptoms.  Or at least some of the symptoms.  But they don't really heal.  They don't really cure or mend. 

Once you stop taking them, you're back to where you were, which is an odd trip.  There's one term that's been used by some psychiatric activists in Japan which is to use the word "recovery" from the language of AA. 

I don't like that it's from AA, but this notion that I am always a psychiatric disabled person, even when I'm doing well, even when I'm taking medication.  It is always who I am.  It's in my nature.  It's like accepting who you are and working from there. 

I like that language of always being in recovery.  But I don't like how it takes away some of the acvtst component and puts the onus on myself. 

Anand Prahlad:  It would be similar with autism.  There's no mending or healing.  I don't know that there's any mending or healing necessary because I don't think it's an illness. 

When it comes to PTSD or PTSS trauma, and let's say trauma related to race, when I think of PTSD, I think you have a trauma and then there's the after trauma in the period or the space of the after trauma. 

Then you can actually engage ideas like recovery or healing.  But if you have trauma today and then you have trauma tomorrow and then you have trauma the next day and that's your life, where is the space for actual mending or healing? 

I think that's one of the really disturbing things about racial trauma is people aren't granted the space of post traumatic space. 

As far as my own disabilities, healing in that way, I think of healing in moments such as creative moments where one can, let's say, transcend the trauma. 

Or one can even make it into something else so that it's not what it was at the moment that you experienced it.  Or if you practice yoga or you practice meditation then maybe you're able at moments to take some of the trauma that's settled in your body out. 

But I don't know that that would be mending. 

Joel Michael Reynolds:  I have a second question from the audience.  I'm not sure this person actually meant to have it thematically come together with the last one, but I think we can build on the comments you just made. 

This comes from Patricia.  She writes, I have mixed feelings about Rosemarie's discussion around broken and fixed.  When one is recovering from a medical trauma with new disabilities, there is a feeling of being broken. 

But as one adjusts and one learns to live with the new normal, that sense of being broken can shift to simply being okay or maybe even great.  The point of this question is to say are there contexts in which it is and should be acceptable to consider one's self broken? 

One of the reasons this conversation between the three of you is so rich and I have learned so much is there has been a very strong interplay between psychological/psychiatric/intellectual disabilities, physical, and also pointing to disabilities that are clearly a result of societal inequities, injustices, and problems. 

The complexity of moving through these domains and showing how they're connected has been coming out over and over in our conversation so far.  Maybe this question is an opportunity to circle back to the way in which there might be situations where, for example, feeling broken is okay. 

I forgot one more thing.  Liz Bowen pointed this out.  Ann, one of your paintings is called My Beautiful Broken Brain. 

Ann Millett-Gallant:  Yes, I think when Rosemarie was saying that, she was saying that people think of it in terms of it being broken.  Not that the person themselves is broken.  That other people conceptualize that. 

That should be open to interpretation.  I might consider myself broken one day about something that I'm just upset about that day.  I can go through that. 

And I feel broken from some of my experiences, but then I find other ways to do things or try to deal with the pain as best I can, which is artwork to explore these ideas. 

One reason I study artwork is because it is a creative expression.  There are different interpretations to it.  There are always more interpretations.  That's what is interesting to me, to study those creative acts. 

In terms of one's society and one's nationality and being an individual at the same time.  I don't know if that helps in response to that question.  Maybe it's a problem of broken versus whole as absolutes.  Broken means different things to people at different times. 

It's not something you have to overcome or mend completely.  

Karen Nakamura:  There is a Japanese artform of repairing pottery with gold.  You use gold to repair the inlays.  You get beautiful pieces that have been repaired that way.  In some ways, the broken and repaired piece and more beautiful than the original one. 

It reminds us to go back to Prahlad's point about thinking about the fragility of the world and nothing lasts forever.  Each break is unique.  And it comes back together.  And that is also unique. 

I don't think it's bad to refer to ourselves as broken at times.  There are periods where my brain comes crashing down on me.  Today is one of them.  I apologize for my affect. 

But I am reminded that these are the moments that remind me of my humanity and frailty.  They're also the moments that give me the energy to do things later on.  It's not always a negative to be broken. 

Rosemarie Garland-Thomson:  Thank you for that comment.  I wanted to suggest that I would want all of us to think that these conversations are less about what's permissible and not permissible, what's okay and not okay, but rather that what we're doing is together exploring and offering a variety of different perspectives, not rules, about how to think and be in the world as people considered disabled and not disabled. 

One of the things I appreciate about the concept of the humanities is that it invokes the idea of the human.  And the human is a way to yoke many of these differences and variations that human beings and the larger non-human world bring forward to us and to think about them. 

I would not want my language and thoughts to be considered permissible or not permissible.  Nonetheless, thank you for the comment about broken and unbroken. 

Joel Michael Reynolds:  Anand, did you want to jump in or should I move to the next question? 

Anand Prahlad:  I'll just add a little bit.  When I think of broken, I think of a medical creed:  Do no harm.  But in fact, it's very difficult for medical professionals to treat people very often and do no harm. 

Sometimes the harm does end up leaving people feeling broken in ways that they weren't before they received those treatments.  I don't think it's necessarily just whatever disabilities we might have before engaging with medical professionals. 

I think sometimes it's also the result, the side effects of medical treatments that can cause conditions that we might feel broken. 

I feel broken in this way or that way.  It's often a trade off.  Does the feeling of brokenness in that way but this other thing over here is managed better, is that a better situation than if you didn't have the new brokenness and the thing over here was not being managed? 

It can get complicated in that way. 

Joel Michael Reynolds:  This is also making me think of a personal comment.  Much of my psychiatric disabilities, a lot of them are a result of questions of grief and loss and separating out what is in relationship to very specific events versus what is just a question of difference and how I am. 

But a question of difference and how I am that I sometimes feel very viscerally as being broken.  And I sometimes feel very viscerally as a sense of loss.  That is a very complicated interplay and one has to think about both environmental and structural factors and individual ones to even broach those types of issues. 

One other question from the audience I wanted to make sure we got to, I think this will take this last part of the discussion and open it up even further to one of our primary themes of not only today but this event as a whole, that of flourishing. 

This comes from Greg.  He writes:  I understand Professor Prahlad to be reinterpreting flourishing to lament impositions of social factors but also accepting personal limits as a feature of all human life and embracing interdependence with others including the natural world. 

Greg writes:  I find this very attractive.  Does it not, though, also raise a conceptual challenge for knowing how to ensure that human flourishing is a right enjoyed by all people?  How can we know if one is close enough to being who one wants to be or having what one wants or feeling like one can be one's self to be described as flourishing? 

Anand Prahlad:  Can you read the question part again? 

Joel Michael Reynolds:  Absolutely.  Greg writes:  Does balancing the -- let me try to rephrase it. 

Does balancing the tension between accepting personal limitations and acknowledging the massive social limitations that are imposed on us, does acknowledging that tension raise a problem of knowing how we can tell whether or not someone is flourishing and how we can establish a world in which there are human rights such that that is maximized?  Such that flourishing is maximized for as many people as possible? 

I hope I did justice to the question by slightly rephrasing it. 

Maybe the simplest way to rephrase it is, how do we translate these insights today into questions of human rights.  How to make societies so that more people can flourish with the bodies and minds they already have?  Big question, very big question!  [Laughing]

Anand Prahlad:  I think I'd rephrase that as, where do we begin?  How can we begin.   To say how we can accomplish it, I don't think we have that much time left to map that out.  But some places we can begin. 

I think one of the main places we can begin is with a different kind of education in K-12.  So that people graduate from high school with a different kind of sensibility about what it means to be a human being.  What it means to be a human being relative to other life forms on the planet.  What it means to be a human being in this particular moment in which we're living now.  I say that with full understanding of how difficult it would be to transform educational institutions like the public schools, for example. 

But a lot of things are difficult.  I think it's a necessary thing that would make a big difference in the future trajectory of our society, if that could happen. 

Karen Nakamura:  I think it's coming.  At universities across the nation, there's no university that hasn't had a massive increase in disabilities whether psychological developmental.   That's with the Americans With Disabilities Act, with thriving in environments and IEPs allowing them to come.  Now they are coming to college with faculties allowing them to change.  

In 4, 10 years that wave will come into society.  We can either try to stop it and institutionalize them.  But I don't think we can ever go back to that period.  Instead companies and other places will have to figure out what to do with this generation of kids who were taught a more restrictive environment is the natural.  Of course they have a right to thrive, to be here.  I have a lot of hope for generation of kids born after 1990. 

Joel Michael Reynolds:  One more audience question.  Karen and Anand you both brought up the question of younger people, especially those going through education.  This makes it slightly more focused.  Michelle from public audience.  What are people's views on parents making the decision on making a cure.  How to have parents consider all the rich points on identity, pride, difference, with respect to their children. 

Karen Nakamura:  For me, talk to the adults living with the disability.  Whether cochlear implants.  Or applied behavioral therapy.  Talk to the adults.  It's often able bodied neurotypical.  If you talk to those with cochlear implants they'll let you know it's just a strong hearing aid, accompany it with sign language.  Find out what your child wants.  Give them language and hearing.  You talk to adult autistics who underwent therapy and they'll say it was horrible, "I spent all day with a therapist telling me how not to stim and it was a waste of time."  We never talk to adults.  Others who went through it can share their experiences. 

Anand Prahlad:  I agree that is an important way for parents to become educated on disabilities.  On a macro level.  I think again having some fundamental transformation of our social system would help.  A lot of parents are really making decisions based on, they can't take time off from work. 

Or they are afraid their children will be bullied.  Or they're afraid their children will be left behind.  Or have experiences in their school or in other situations where they are traumatized because of their difference. 

If parents don't have to be concerned with those issues they'll be a lot more open-minded about not finding "cure" for their children.  A lot is just practical.  If you are for example a single mother of 3 children and need to work 2 jobs to make ends meet and you have a disabled child who requires a lot of attention, and you are given the option for them to be "cured" or to receive some treatment that means their disability is not as noticeable or momentarily fixed, you can understand that'd be an inclination on part of the parent to take that option. 

I think part of it is really social circumstances that weigh on parents a lot of time, that influence their decisions. 

Joel Michael Reynolds:  One of the things that came out in each of your talks is how society fundamentally shapes what we take to be our individual choices.  Those choices are often not choices at all if you live in a society that's fundamentally unjust and equitable, that doesn't offer universal Pre-K, offering parental leave, that doesn't offer sufficient support for parents with differing needs, doesn't offer universal healthcare, you get my point.  I might be pointing to the United States in particular as a particularly egregious example of a country pursuing life, liberty, pursuit of happiness but doesn't let it became reality for vast majority of citizens.  Hopefully that'll change. 

Speaking of politics, we don't have to get into details.  This is important to bring up.  There's debate at national level about the meaning of infrastructure.  People notice in the infrastructure bill there's care for children and older people built into it.  I'll be honest, my whole life I was confused by why infrastructure referred to roads and bridges.  If you don't talk about care for humans, what are we talking about?? 

Nonetheless, I am combining a couple audience questions.  Can you talk about structural supports, infrastructure, relationship between structures for cure, and what must be in place to even imagine cure in non-ablest manner. 

Ann Millett-Gallant:  People often think cure means they don't need services, treatment.  And that is problematic.  That things like therapy in whatever form a person needs should be funded.  Funding for infrastructure of the human too. 

Joel Michael Reynolds:  We are nearing end of time.  I want to invite Rosemarie, any comments, anything you want to highlight and circle back to.  Our speakers are amazing, we get the great joy of working with them, but we're all in email communication for 8 months.  I know Rosemarie, Liz, Erik might want to jump in. 

Rosemarie Garland-Thomson:  I'm happy to begin by saying thank you for these 3 presentations.  And to the National Endowment of the Humanities for funding this.  The Hastings Center for structuring this.  Erik and Liz a many at the Hastings Center. 

For the opportunity to think about this in incredibly challenging transformation that we have all gone through over the last year.  Many transformations.   I want to call attention to one of them Karen called forward.  The transformation of in person work and in person events if you will. 

And in person life together in public.  And what we think of as virtual.  That's such a crucial, that'd one really crucial shift that's taken place in particular for people with disabilities. 

Because we, meaning people with disabilities tend to use technology perhaps differently than non-disabled people.  I don't want to oversimplify this.  As Karen has pointed out and many of us who work in disability culture and disability studies, the world is designed for a particular kind of person. 

And thus technologies and the world we live in has not been built for, let's just say the kinds of people who are involved as speakers and participants in these conversations. 

And it's so important to be able to think about how these transformational technologies are operating.  How they are both paths to access for people with disabilities and at the same time barriers to access for people with disabilities. 

I want us to remember that part of what we're doing in this series is to think about that.  This series began as an in person event in New York. 

We thought to just videotape it.  We'd make that available, somewhere on the website.  We needed to transition to fully virtual events which we've had now, three more events. 

They have evolved in terms of people's comfort level in using these.  And exploring these new complexities in disability and technology. 

I thank everyone for being able to address that in a complex way, here and now. 

I think the record of these conversations, which will be made into a book that Oxford University Press will publish, will be useful as a glance for what this year has been for people with disabilities. 

Thank all of us today for this and ongoing conversations. 

Erik Parens:  Liz did you want to add anything? 

Liz Bowen:  Rosemarie really summed it all up here.  Thank you to all of you.  Echoing Rosemarie.  The complexity, patient, flexibility you brought to this process.  One of the things we learned through organizing this series is just how technology is often positioned in a cure in itself.  Even the question of accessibility, that Zoom made everything more accessible.  And we learned in grapplings with this platform it can often be difficult.  The interpreters aren't visible or the captions aren't visible of the chat is distracting to someone. 

There are all these things to be navigated.  One of the things about disabled community is we are all invested in finding solutions and hacks, to use Karen's terminology. 

What's been powerful about working with you all in this series is questioning the idea that there's these technological cures.  Even for our bodies or the societal problems we're grappling with. 

Erik Parens:  I'd only reiterate the jaks that Rosemarie and Liz have already offered. 

First of all, to any age.  I cannot overstate how grateful I am for an opportunity to have a public conversation about the most complicated and important of questions. 

As Rosemarie said, we're not about legislating answers, we're about exploring questions.  There's almost nowhere left.  Well a few places left where people get to honestly explore together hard questions that don't have crisp answers.  We've been able to do that today because of these remarkable wonderful speakers, Prahlad, Ann, Karen.  I and everyone in the audience is so grateful for what you've given to us today.  I don't have anything to add.  Other than to ask Liz will you please put up the slide where we formally thank people who've helped put this together.  As always it's many people. 

Liz Bowen:  Thank you to the National Endowment for the Humanities, Patricia Brooks.  From the Hastings Center, Mark Cardwell, Julie Chibbaro. 

Thanks to our sign language interpreters.  Mary Darragh Maclean, Mike Barrios, and Jamie Hays.  As well as our CART services from Karen Johnson, Andrew Hansen, and Amy Lee. 

And thank you to all of you in the audience who came here today and asked truly wonderful questions.  I'm sorry we didn't get to all of them, but it's been an amazing conversation. 

Joel Michael Reynolds:  Are we officially ending now?  Am I supposed to do that?  [Laughter]

Liz Bowen:  Yes.  Sorry.  I'm finding the end.  Sorry, it's hard when I'm sharing the screen.  Bye, everyone. 

[End of event.]

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