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This video transcript is formatted to meet PDF/UA standards.

Indisposable: Chapter 1

In Indisposable: Structures of Support After the ADA (Americans with Disabilities Act), a Ford Foundation Gallery exhibition curated by Jessica A. Cooley and Ann M. Fox, leading artists and scholars address the lived experience of disability today and the urgent questions of this moment where pandemic and demands for racial justice intersect. This video transcript captures an event that took place on September 17, 2020, featuring a performance by actor and playwright Ryan J. Haddad, who also serves as emcee; a reading by writer and scholar Ellen Samuels; a film by artist Alex Dolores Salerno; and works by artist Kevin Quiles Bonilla. The screening is followed by a conversation between Salerno and Bonilla and a Q&A.

Transcript begins.

LISA KIM: Hello. My name is Lisa Kim, and I’m thrilled to welcome you to the launch of Indisposable: Structures of Support After the ADA.

I’m a Korean American woman in my 40s with shoulder-length straight black hair. I am wearing pink glasses and a black cotton scoop-neck blouse. Behind me is a print of the American flag, where the word “Think,” in white letters, has replaced the stars in the blue field. I’m coming to you from the Hudson Valley of New York, a land that was pillaged and seized through war, disease, and forcible relocation by European colonizers. This area is the ancestral home of the Mohicans and Munsee Lenape.

Today, we’re kicking off an exhibition series of new commissions and projects to be presented online over the next 10 months. This exhibition was curated, truly with care and deep, thoughtful consideration, by Jessica Cooley and Ann Fox, who are behind the scenes with us today. I encourage you all to visit the exhibition web page on our website to hear directly from Jessica and Ann. Their exhibition introductory videos are now live.

So, we had originally planned to open the show over the summer in our Midtown Manhattan gallery space to mark the 30th anniversary of the Americans with Disabilities Act. But 2020 clearly had different plans for all of us. It is eerily timely that in this moment of the pandemic, combined with our ill-prepared support networks for care and education and the devastating real-time effects of climate change, while we continue to work to dismantle systems of economic, racial, gender, and access inequality and injustices around the world, it is imperative that as we examine our constructs of what it means and who is deemed to be essential, to be valued, to be indisposable.

I’m deeply grateful to our curators, Jessica and Ann, and all of the artists, scholars, and activists who are responding so eloquently to the theme of the show and who have risen to the challenge to re-examine the exhibition format to create new works intended to be shared on screen via remote access. Please stay tuned and keep in touch with us for updates on forthcoming programming.

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For now, today’s program, I am so honored and pleased to turn the screen over to your emcee for today. He is an actor, a playwright, a performer, a cabaret star, and all-around amazing human, Ryan J. Haddad. Thank you for joining us online, and please enjoy the show.

RYAN J. HADDAD: Hi. My name is Ryan J. Haddad. I am thrilled to be your host of Indisposable. Thank you so much for having me.

I am a Lebanese American man with cerebral palsy. I have black hair, blue-rimmed glasses, I’m wearing a maroon button-down, and I have a navy background behind me. I am coming to you from the land of the Erie people, now known as Cleveland, or Parma, Ohio.

When I was first asked to host this and share a story with you—I’m an autobiographical storyteller—I had a lot of ideas of what might work and what might not. And then I watched Alex’s beautiful film that you’re going to see in a little while, and it reminded me of my ancestry, of the women who made me who I am today. And so I want to tell you a little bit about my grandmothers.

I never felt particularly connected to my Lebanese heritage. I knew where my ancestors came from. My family was very proud of that, and I talked about it, of course, but I don’t speak Arabic. I’m third generation, and no one in my immediate family has ever been to Lebanon since my great-grandparents came here a hundred years ago. But when I moved to New York, after graduating from a liberal arts college with a meal plan all four years, I was trying to learn how to cook really seriously for the first time, and I asked my mom to share some Lebanese recipes with me. This was meant to be a diversion from my usual, you know, pork chops and vegetables and chicken tenders. So the first thing she introduced me to were chicken and rice—the dish chicken and rice, which is not rocket science. It’s literally just chicken and rice. Anyone can make it. And the second was a dish called sheikh el mahshi, which is a layered eggplant dish with ground beef, where you put tomato sauce and you put it in the oven. It’s just divine.

These dishes helped me feel closer to home, being in New York, living away from Ohio for the first time in my life, and it helped me feel closer to my family, particularly my grandmothers, my Nana Evelyn—that’s my dad’s mom—and my Grandma Julia—that’s my mom’s mom. They were the gateway to the Lebanese food of their mothers and grandmothers and the past and really were the key for us into Lebanese culture through the food.

I remember Grandma Julia would make a smorgasbord of things, including pierogies, which have nothing to do with being Lebanese, and she would make kibbeh, these little footballs that she would make, and she would make kousa. Kousa is a squash that’s stuffed with meat and rice. It’s very similar to grape leaves, same stuffing as grape leaves, except it’s a squash instead of the leaf from a grape.

Nana would make kousa, as well. She would make grape leaves, as well. Their recipes tasted different, but they were each filled with love and absolutely delicious. And let’s

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see. Nana would make loubieh and she would make her rice. The only reason I know how to make rice is because of my nana. Oh, my gosh, Lebanese rice—a whole stick of butter in it. A whole stick of butter is required. And she would make these butter cookies, which also have multiple sticks of butter, called ghraybeh, that had little nuts in them, and they were just butter and flour. That’s it. Nana would make these for every holiday—every single one, every party we ever had, and people would just devour them. Anytime anybody had an event, Evelyn needed to make her ghraybeh—her butter cookies.

She made them for all the holidays all throughout my life, until this last year, when she was a little weak and a little sick. She had been diagnosed with stomach cancer in October of 2019. So when Thanksgiving and Christmas came around, this time, my sister-in-law, who is not Syrian or Lebanese, my sister-in-law Amanda, she decided years before, proactively, that she was going to have an in-person tutorial with Nana and learn how to make these cookies, and so in the fall of 2019, when it was holiday time, she realized it was time for her to put that recipe to use.

Sort of like when Grandma Julia—we realized her dementia was getting bad when she stopped knowing how to make spinach pies. They were at my house in the kitchen, and they were rolling out the dough, and she started playing with the dough like Play-Doh. And that’s how we knew. When the cooking went away, we knew that something was wrong, that there was a change that we couldn’t come back from. It’s never easy to say goodbye to someone, especially when you see that they are making their exit. With Grandma Julia and her dementia, we said goodbye to her long before her body actually left us.

But with Nana, her body was fading and her mind was still there. Still there. And so she had to reconcile with her own mortality, with the loss of her life and the need to say goodbye to her family. So this summer, as her body continued to get weaker and weaker and weaker, we were so fortunate, even with COVID, to be able to be with her in the same space. Thanks to in-home hospice care at my aunt and uncle’s house, we were able to sit with her, hold her hand, sometimes even without masks, because she said, “Take that off. I want to see your face.” And at that point in her life, we thought, well, we’d better do what she wanted.

And never have I had the privilege of that kind of closure with a loved one before, to have somebody look me in the eyes, tell me everything that she wanted to say, not leaving one word out, and giving me the chance to say whatever I wanted back to her, the words that I knew would be some of the last that we shared, when I was able to share words and not cry.

And when I would cry, she would say, “Be strong. Be strong. Be strong like my father and mother, who came here from Lebanon and Syria.”

And I said to her, “Nana, did you ever get to go back? Did you ever know your grandparents?”

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“No,” she said. “I didn’t.”

The relationship that she had with me was so deep and profound, and I can’t even imagine what it is for her to not have had that. One of the last days I remember having a really full conversation with her, she looked me in the eyes, after years of me joking that I was going to write her a Hallmark movie about the “Evelyn Haddad Story.” And she’d say, “I’m boring. I’m boring. You don’t need to write about me.” And at the very end, when it was one of the last times that we spoke, she looked at me and said, “Write a nice story.” So that’s what I’m going to do.

Thank you for letting me share a bit of that today.

Okay. Next up, we have a video from Ellen Samuels, the disability writer and scholar. Ellen will read from a selection of her poetry, including the debut of a new work from her forthcoming poetry collection titled Hypermobilities. Ellen is also associate professor of gender and women’s studies and English at the University of Wisconsin-Madison. Her publications include Fantasies of Identification: Disability, Gender, Race, from NYU Press, in addition to critical and creative work published in numerous journals. She has received the Catharine Stimpson Prize for Outstanding Feminist Scholarship and two Lambda Literary Awards. She lives in Madison, Wisconsin, with her partner, son, and dog.

Without further ado, the poetry of Ellen Samuels.

ELLEN SAMUELS: Hello. My name is Ellen Samuels, and I’m going to read some poems today.

I’m a white, Jewish, femme woman in my 40s, wearing a red dress and red lipstick. I’m sitting outside in my backyard with a background of trees. I use the pronouns she, her, and hers. I’m coming to you today from stolen Ho-Chunk land, also known as Madison, Wisconsin.

I’d like to thank the Ford Foundation, and especially Ann Fox and Jessica Cooley, for including me in the Indisposable exhibit.

The first poem I’m going to read doesn’t need much introduction. It is, uh, riffing on a very common conversation that people with disabilities and chronic illnesses have. And it’s called “In Answer to Your Question.”

“In Answer to Your Question”

Yes, I have tried yoga. I have tried going gluten-free. I have exercised, every day until my abs rippled like an armadillo’s shell.

And still, my friends call me up to say

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that Pilates makes them feel ten years younger.

Yes, I have tried not eating sugar. I read labels like poetry, ruling out fructose, crystals, nectars, that confectionary of risk. I turned away

each forbidden fruit, crunched through bowls of cabbage for breakfast, until even a raw banana slice lay a faint music on my tongue.

And still my coworker stops me in the hallway to tell me that sex has cured her migraines.

Yes, I have tried yoga, have pretzeled my legs into shapes they already knew, balanced, breathed, lain down and shuddered my way back up. I have stood, a crane

reaching to the sky in tai chi class, I have gone back to ward off monkeys, I have held the ball of my own faltering, hand- heavy persistence.

And still my family sends me articles about the power of positive thinking.

Do you really want me to answer your question? Are you ready to try

my bodily practice? Not trying to be crane, not pretending to be winged, just

making my way down the long hallways of my body’s house, holding on

if I need to, stretching my hands into tiger’s

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mouths, rounding my arms to hold

the pain that never goes away, that is the only true answer I can give you.

This next poem, I think, is very relevant today, during the COVID-19 pandemic, as so many of us feel, all the time now, we’re not doing enough—we’re not doing enough for our jobs, we’re not doing enough for our families, we’re not doing enough to fight in all the struggles that are so important right now. We’re not taking good enough care of the people around us, we’re not taking good enough care of ourselves. That feeling of failure, of always having to apologize for what you can’t do, is so central to the experience of chronic illness. And I wrote this poem out of that experience. And it’s called “Yesterday, I Apologized.”

Yesterday, I apologized to the dog for not being able to walk her,

anymore, to the moss-green lake in the dappled light, her nose

tender against my palm, sampling fish-reek and the wind’s news.

Yesterday, I apologized to the middle of my middle finger, the years-old

pebble under skin, bone-knot bunched in memory’s string. I said

I’m sorry to the skin’s warp and weft, to the nerve strung

tight on the knuckle’s fret. I said I’m sorry to the skin itself, curtain

roughly drawn across the body’s pink. I apologized to sacrum

and thighbone, to the hinge unhinging where it used to

swing, striding next to the dog on our afternoon walks.

Yesterday, I apologized

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to the nightstand where bottles

jostle and crowd with last year’s books. I sent

my regrets to the rutted bed where I knelt each summer

pulling sorrel and dandelion, snow- on-the-mountain and creeping

Charlie, in the ripe dirt- swell and welter of heat.

Last night, when I lay down on the smooth relief of pillow

and sheet, I closed my eyes and apologized to the insides

of my eyelids, as if two moths having settled there, needed to know

what would happen next. Close your wings, I said, stay with

me in the moon-wet night. We have done all we can.

These last poems I’m going to read are all taken from my forthcoming book, Hypermobilities, which will be published in 2021 by the Operating System Press. Hypermobilities is a memoir in verse and the poems in it are all haiku. They’re all about the symptoms and experiences of my disability, which is Ehlers-Danlos syndrome, which causes joint hypermobility. And also the medical system in which I’ve been deeply embedded in the last few years.

I wrote these poems, most of them, in my head while going through medical treatments and procedures, and that’s how they ended up as haiku. So they were short enough that I could write them in my head without having access to any kind of computer or pencil or paper. So I’m going to read about seven of those.

“Hypermobility”

No one is supposed to bend that far. No one knows why you don’t just break.

“Shoulder Subluxation”

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The smallest pop. Un- stopped, what you knew and forgot in this knife-joint caught.

“The Difference Between Joint Subluxation and Dislocation”

Door unlatched in the body-house. Shudder to slow- kiss the jamb. Or slam.

“Ankle Sprain, While Sleeping”

Warm swell of pain, foot- knuckle bruising. What dance did you dream and forget?

“Infusion: Ondansetron 5 mg.”

Quick dip of needle, blood-taste before grace. Slow push to hold you for days.

“Infusion: Normal Saline 500 ml.”

Ocean, seagrass, spill of sand into tourniquet, needle, mermaid hand.

“Superficial Phlebitis”

Needle-mouth, vein-road, the price that was paid. What healed, hurt. What hurt is what stayed.

Thank you.

RYAN: Thank you to Ellen Samuels. Those were gorgeous, gorgeous poems.

Now for our featured artist, Alex Dolores Salerno. Alex is an interdisciplinary artist, based in Brooklyn, New York. Their practice is informed by themes of care, interdependency, queer-crip temporality, and the commodification of rest. Salerno received their MFA in fine arts from Parsons School of Design and their BS in studio art from Skidmore College. We are honored to debut their film El Dios Acostado as the first commissioned work of Indisposable.

Following the screening, Alex will be joined by artist Kevin Quiles Bonilla for a conversation and hopefully for some Q&A. Kevin is an interdisciplinary artist born in San

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Juan, Puerto Rico. He explores ideas about power, colonialism, and history with his identity and context. He currently lives and works between Puerto Rico and New York.

And now, without further ado, El Dios Acostado.

[El Dios Acostado video begins.]

ALEX DOLORES SALERNO [voice-over]: On the ground in an open field, a person rests on his side. We see him from behind tall grass blowing in the wind. He faces away from us and towards green trees and bushes. A powerline runs across the field. The sky is bright with white clouds. In the distance is a large mountain with several houses at its base. In contrast to the gentle green slopes, the steep peaks of Mandango rest at the very top of the mountain. Tiny insects fly quickly by. Birds sing their songs wherever we go.

FRANCISCO (ECHO) ERASO [voice-over]: En el suelo del campo abierto, descansa una persona en su costado. Aquí la vemos detrás del pasto alto que el viento sopla suavemente. Su postura da frente a los árboles y arbustos verdes. Un cable eléctrico en el aire atraviesa el campo. El cielo es brilliante con nubes blancas y en la distancia hay un cerro grande con casitas. En contraste con las colinas onduladas y verdosas, se levanta el cerro de Mandango que sobresale por su forma de entre todas las montañas del lugar. Pequeños insectos revolotean rápidamente. Los pájaros cantan sus melodías por donde quiera que nosotros vayamos.

JUANITA CÓRDOVA SALERNO [voice-over]: Las montañas de los Andes que se levantan hacia el cielo con sus picos plateados y con sus faldas verdosas hacen possible la vegetación y la armonía de vivir en esos lugares.

JUANITA [voice-over]: The Andes Mountains rise towards the sky with their silver peaks and green skirts filled with rich vegetation and harmony.

JUANITA [voice-over]: El cerro Mandango es una montaña que a simple vista simula un hombre acostado custodiando sigilosamente la seguridad y harmonía del valle sagrado de la longevidad llamado Vilcabamba. Este cerro es conocido como “El Dios Acostado.”

JUANITA [voice-over]: At first glance, the Mandango mountain resembles a sleeping man carefully guarding the harmony of the sacred valley of longevity called Vilcabamba. This mountain is known as “The Sleeping God.”

JUANITA [voice-over]: El studio e investigación de los gerentólogos ingleses despertó la curiosidad del pueblo de Vilcabamba de vivir una vida longeva y ser conocido a nivel nacional e internacional. El hecho de haberse declarado como un “valle de la longevidad” por su clima a nivel mundial y sobre todo a que muchos Estadounidenses se radicaran en Vilcabamba. Estos extranjeros compraron a buen precio los terrenos de muchos habitants pobres y tuvieron que alejarse de sus tierras natales. El estilo de vida y la tranquilidad en Vilcabamba ya no es la misma debido a la gentrificación. El medio ambiente ha cambiado mucho también.

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JUANITA [voice-over]: The studies and research of the English gerontologists awakened the national and international curiosity about the long lives of the people of Vilcabamba. This place was declared a “valley of longevity,” which brought in many people from the United States who settled in Vilcabamba. These foreigners bought land at a cheap price from many of the poor inhabitants who were then forced to leave their homelands. The lifestyle and tranquility of Vilcabamba is no longer the same due to the gentrification. The environment has changed a lot, as well.

ALEX [voice-over]: We are now in a cemetery. A small white cross adorned with fake flowers sits on top of a tombstone engraved with my family’s names. In the distance is a cluster of white tombstones resting at the base of a mountain underneath a bright blue sky. Lush green and red trees rustle in the wind as the clouds pass by. The sunlight is warm.

ECHO [voice-over]: Ahora estamos en un cementerio. Una pequeña cruz blanca adornada con flores falsas se sienta encima de una lápida grabada con los nombres de mis familiares. A lo lejos hay un grupo de lápidas blancas descansando en la base de una montaña debajo de un cielo azul brilliante. Exuberantes árboles verdes y rojos susurran en el viento cuando pasan las nubes. La luz del sol es cálida.

JUANITA [voice-over]: San Pedro de la Bendita no fue afectada por el descubriemiento por los estudios científicos que realizaron los ingleses. Este lugar tiene el medio ambiente más limpio y más agradable y la vida de esta manera sigue siendo más tradicional y más tranquila.

JUANITA [voice-over]: San Pedro de la Bendita was not affected by the discovery from the scientific studies carried out by the English. This place has the cleanest, most pleasant environment, and this traditional way of life remains more calm.

ALEX [voice-over]: We now look out onto a landscape and blue sky, the cemetery behind us. The small town of San Pedro de la Bendita is nestled at the foot of the Andes. Closer to us, tall grass and tree branches dance in the wind. Large shadows cast by the clouds slowly make their way across the landscape.

ECHO [voice-over]: Ahora, miramos otro paisaje con el cielo despejado azul y el cementerio a nuestras espaldas. Es el pueblito de San Pedro de la Bendita que se encuentra anclado en un valle rodeado de montañas Andinas. Más cerca de nosotros la hierba alta y las ramas de los árboles se mecen en el viento. El horizonte está cubierto de nubes inmensas que proyectan lentamente sus sombras a través del paisaje.

JUANITA [voice-over]: Después de haber vivido y estado tanto tiempo lejos de mi pueblo natal por 35 años, la magia continua viva, como una llamarada que abraza los recuerdos añoranzas y costumbres de mi familia. Cuando regreso a San Pedro, me siento como si nunca hubiera salido de allí. La hospitalidad y el cariño de mi gente me hacen sentir feliz y añorada. Estos pequeños y sencillos recuerdos son poderosos porque me hacen apreciar y reconocer la grandeza de mi pueblo.

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JUANITA [voice-over]: After being away from my hometown for 35 years, the magic is still alive, like a warm embrace of the memories and customs of my family. When I return to San Pedro, I feel like I have never left. The hospitality of my people makes me feel so loved. It is the simple things that are so powerful because they make me appreciate and recognize just how wonderful my town is.

[El Dios Acostado video ends.]

KEVIN QUILES BONILLA: Hello, everyone. Hi, Alex.

ALEX: Hi. Am I on screen now?

KEVIN: Yes.

ALEX: Great. Give me one second. I can’t see myself on the screen. Okay, I can’t see myself on the screen, but if everyone else—

LISA: You’re visible, Alex. Same thing happened to me. Go ahead.

ALEX: Alright. I’m not seeing Kevin.

KEVIN: I can see you, so it’s—

ALEX: Okay, there.

KEVIN: Yeah. Hello.

ALEX: Alright, I’ll get started.

KEVIN: And hi to everyone.

ALEX: Hi, everyone. Thank you so much, Ryan and Ellen, for your performances. I’m Alex Dolores Salerno, and I use they-them pronouns, and I’m coming to you from Lenape and Canarsie land, also known as Brooklyn, New York.

I’m a white Latinx person, and I’m wearing a gray button-up shirt, and I have short black hair. Behind me is a white wall, and I’m resting against a couch. During this talk, I’ll be describing all of the slides that we’ll use and anything that I hold up on the screen.

I’ve been so, so lucky to know my dear friend Kevin Quiles Bonilla for the past four years, since our first meeting in grad school, and I’m always so inspired by his work. So right now, I’ll turn it over to Kevin to introduce himself.

KEVIN: Thank you so much, Alex, for that introduction, and hello to everyone. And thank you again to Ryan and Ellen, as well. My name is Kevin Quiles Bonilla. I am a visual artist.

I am a young Puerto Rican brown boy in my mid-20s. I have curly black hair, black eyeglasses. I have black headphones and a black T-shirt that says “Calla de la

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Resistencia,” which translates to “Street of Resistance.” Behind me is a beige wall with three stands, and on my left is a small succulent. And I use he-him or they-them pronouns, and I’m coming to you from the Lenape land, also known as Manhattan.

And before we start a conversation, I really just wanted to say a big congratulations to you, Alex. Aside from just being really excited to be sharing this space with you and Ryan and Ellen, I really wanted to congratulate you on this very beautiful work that is very powerful and very necessary for this time.

So, yeah, before we begin our conversation, I sort of wanted to give you the space so you could talk a little bit about and give instruction about the themes that you were interested in talking about with the creation of this work.

ALEX: Thank you so much, Kevin. So, okay. So, before we begin, I wanted to take a second to consider the ways that panels and lectures, both in person and online, are formatted in ways that are often difficult for neurodivergent people. So I would just like to iron out the ways that we might show up today and be our most comfortable selves. And so for me, this means that I’m going to be reading from text that I’ve scripted, and it also means that I’ll be using stim toys, such as this one right here. I am holding an orange-and-green, flexible, plastic toy with interlocking parts. And I think toys like these help me concentrate and ground myself.

And I would like to first begin with a quote from SE Smith’s essay in Alice Wong’s new book Disability Visibility: First-Person Stories from the Twenty-First Century, this book right here. And I also want to say that Ellen Samuels has a really great essay in this book, titled “Six Ways of Looking at Crip Time.” And I am holding the book right now, and it has overlapping triangles in a variety of bright colors, black text, and on a white background. Okay. Quote: “Disability is a broad sociocultural identity and experience, and not everyone thinks about disability in the same way. This can be the paradox of crip space. When do we exclude others in our zeal to embrace ourselves with our refusal to consider the diversity of human experience? How can we cultivate spaces where everyone has that soaring sense of inclusion where we can have difficult and meaningful conversations.”

So, today we’ll be exploring this paradox that Smith points out regarding the diversity of disabled thought and experience as we talk about our art practices, their overlaps, and the intersection of colonialism and disability. So, while seemingly arguing for accessibility and inclusion of all people, disability studies often finds itself inaccessible, limited in scope, and exclusionary of frameworks of disability of those located in what’s often referred to as the Global South.

I believe it’s imperative to call out the white supremacy in our field of disability studies and arts and confront the production of impairment produced through war, violence, and theft of land and resources. We can simultaneously celebrate the abundance of joy, knowledge, culture, and expansiveness within our disability communities while addressing colonialism as a debilitating force in its historical, present, and ongoing relationship to disability.

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If our definitions of ableism do not include anti-Blackness, eugenics, colonialism, and capitalism, it is lacking. So on the screen, there will be a definition of ableism that I align myself with. You can find it on the website of Talila “TL” Lewis, who is an attorney, activist, organizer who I greatly admire. And it reads, “A system that places value on people’s bodies and minds based on societally constructed ideas of normalcy, intelligence, excellence and productivity. These constructed ideas are deeply rooted in anti-Blackness, eugenics, colonialism and capitalism. This form of systemic oppression leads to people and society determining who is valuable and worthy based on a person’s appearance and/or their ability to satisfactorily [re]produce, excel and ‘behave.’ You do not have to be disabled to experience ableism. A working definition by Talila ‘TL’ Lewis in conversation with Disabled Black and other negatively racialized folk, especially Dustin Gibson; updated January 2020.”

KEVIN: Wow, thank you so much. I think this is a perfect sort of opening for this conversation, this definition, and it made me think a lot about the first time that I started—that I began my interactions with the disability community here in New York, which is when I started being a part of the Arts and Disability residency, which now you are a part of, this year’s cohort. And I remember when I first got invited to join this residency, one of the first things that I did was that I also searched for the definition of disability, and it was sort of very interesting to me because I have had a relationship with disability my entire life, not only because of my own nonapparent disability, but also I am the brother of a woman with a physical disability. So it is something that has always been around me, but I still felt the need to check this definition. And a definition that I found very interesting that I wanted to share was that disability is, and I quote, “a disadvantage or handicap, especially one imposed or recognized by the law.” And I think that terminology, in particular, “imposed, recognized by the law,” that, to me, was very interesting because it allowed me to sort of expand this idea of what disability is, and I think it’s something that Talila sort of touches very brilliantly, this idea of how we must not only acknowledge, but also include colonialism as a disability that is experienced by very specific marginalized communities, predominantly, as you said, Alex, from the Global South.

ALEX: Thank you so much, Kevin. I completely agree that it’s so important to be critical of the ways that society and the government imposes these definitions of us. So, I’m going to talk a little bit about my video now. First, let me get a quick sip of water.

KEVIN: Absolutely.

ALEX: Okay. So, I’m so grateful to be in the company of everyone here today and to be able to share this new video work, El Dios Acostado. So, prior to this, I’ve been working primarily sculpturally around ideas of interdependency and the commodification of rest, and I often work with a bed and bedding materials as a site of care, protest, and mutual aid. So, my interest in the power of crip time, rest, and collectivity allowed me to begin this work by shifting the sleeping figure from the bed and onto a sacred land of rest. And can we please see the slide of Mandango?

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In that video, you see my partner and collaborator, Echo, resting in front of Mandango, which translates to “the Sleeping God,” or “El Dios Acostado.” And there’s so many legends about this mountain, that the Incan people saw in it the face of a sleeping god, that they braid gold in its caves after the Inca emperor Atahualpa died, and that the land of Vilcabamba was once used as a place of rest and healing during travels. And “Vilcabamba” translates in Quechua to “Sacred Valley,” and it’s also referred to as “the Playground of the Inca.” So, my own physical and mental conditions and difficulty finding accessible and sustainable work makes crip time in my own life crucial and political, and it’s through the land that I’ve been able to reconnect with my heritage, as well as learn about rest and slowing down.

The video includes audio descriptions, captions, and written and spoken translations, of course for accessibility, but also intentionally done in a way to let the viewer dwell on the scene at a slow pace. And I knew that I had to set the video to a pace of rest as a way to honor the land itself and acknowledge rest and care for the community and the land as an ancestral knowledge.

Can we see the National Geographic slide? So, this is the cover of the January 1973 issue of “National Geographic.” It has a close-up of an elder from Vilcabamba with deep wrinkles, a white beard, looking out into the distance, hands resting on the top of a work tool. And so, when the English gerontologists, which is the study of aging, came to investigate the people of Vilcabamba, they also spent time in nearby towns, one of which was my mother’s hometown, San Pedro de la Bendita, where she met and helped take care of these researchers as a kid. And she told me that San Pedro could have easily been Vilcabamba because of their similarities. Yet it was Vilcabamba that became popularized as the Valley of Longevity. And I first visited Vilcabamba several years ago, and it was extremely clear the way that the prospect of longevity had changed the culture of the town and attracted people looking for adventure without integrating with the locals.

KEVIN: So, it essentially started becoming this—almost like a touristic place or a place of, like, where people would go on to retire, correct?

ALEX: Yeah.

KEVIN: Yeah. Well, yeah, I wanted to share, cause I started thinking about a few things, especially when I saw the National Geographic and some of the themes, that your mom, for example, was talking about, the researchers, and you had also mentioned about how they stole birth certificates and, you know, it was a very colonialist process that they went through. So I was thinking a lot about sort of how colonialism works in sort of different facets to itself, and one of them that I thought about, specifically with the stealing of the birth certificates, I thought about just medical colonialism and how through science, medicine, and research is just another way in [which] just communities essentially get colonized, and it made me think a lot about the multiple times in which this has happened in Puerto Rico, where I come from.

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It made me think of, you know, the 1930s, where both women and men were sterilized due to the rise in poverty on the island by the government. It made me think of then the 1950s, when women specifically were targeted by the US government and essentially were used as tests without their knowledge so they could test the birth control pill. And it resulted in the deaths of several Puerto Rican women. It resulted in several women becoming sterile. And, yeah, again, just this idea of how they did it without their knowledge, you know, is even more just horrifying.

And, of course, I mean, I do have to bring into the conversation the recent news that have been revealed, you know, of the mass hysterectomies that are happening in the ICE detention centers to immigrant women, which is totally horrifying to me that these practices are still happening in 2020. And I feel that we need to stop referring to them as detention centers and start referring to them for what they are, which is concentration camps, and it needs to be abolished immediately.

ALEX: Yes. Thank you for bringing that up and naming medical colonialism. So, some things I’m thinking about are, first of all, the ways that disability—in many disability-related discussions, we deconstruct the idea of a normal, standard body, and this highlights for me the ways that colonialism imposes ideas about what certain bodies should do and look like and how they should behave. And like you said, like, we just heard this news about the mass, nonconsensual hysterectomies. And we heard this from Dana Wooten, who was a nurse at an ICE concentration camp in Georgia. And, yeah, I just feel like there’s so many things that we could talk about regarding, like, the long history of eugenics laws in the United States, targeting people of color and disabled people. But I just wanted to bring this up to say that, you know, this is nothing new and that the history of forced sterilization is happening as we speak.

KEVIN: Absolutely.

ALEX: And okay, so, I also wanted to share this book. I can’t see myself. Is it visible on the screen?

KEVIN: Yes, it is visible.

ALEX: Okay, great. So, this book is called The Centenarians of the Andes, and it’s a book that my mom gave to me when I told her that I was going to be doing some research on Vilcabamba. She grabbed it for me from her library. And the cover is very similar to the National Geographic cover. It has an elder with a wrinkled face, a white beard, a hat, holding a stick that can be inferred as a tool for work. And there’s a short paragraph that I want to read from it. Quote. “Now that so many of us live longer, the quality of our lives in old age is of huge importance. This is the preoccupation of many people and the particular interest of the gerontologist. But we are also interested in immortality. This has always been a human preoccupation. And we are fascinated by any hints of it. The urge to discover the secrets of the centenarians of the Andes is a strong one. We should learn from these people but not in the process destroy their way of life.”

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KEVIN: Alex, I know we have a Q&A session, but somebody was asking if you could repeat the title of the book.

ALEX: Oh, yeah. Sure. It is called The Centenarians of the Andes, and I’ll just say a warning that it was really difficult for me to read because of the colonial lens and framework of it.

KEVIN: Absolutely. Yeah, and I think that parallel between those two images that, as you said, they’re very similar in sort of the structure and how it was framed. It made me think also a lot about another facet of colonialism, which is colonialism through the photographic lens. And I think, in relation to that, I wanted to bring into the conversation the work of a very specific photographer that had a relationship between photography and Puerto Rico. So if we could go to the following slide ...

So, the following images, are going to be six black-and-white images all depicting different people and sites in San Juan, Puerto Rico—sorry, no, in Puerto Rico during the 19th century. And these photographs were taken by the photographer Jack Delano, who is a Ukrainian photographer who, in the 1940s, was recruited by the FSA, which is the Farm Security Administration, and this was a section of the federal government that also gathered a lot of photographers. Most widely recognized are Walker Evans, Dorothea Lange. And they were sent to different sites and to different states and territories of the United States to document the aftermath of the Great Depression.

This first image shows a leg standing on top of a rock. The shoe is partially broken, so you can see some of the toes of the person. Next slide, please. Thank you.

This next image shows two little girls doing the salute to the US flag in Corozal, Puerto Rico. So, he eventually—he first came in 1941 to Puerto Rico with that specific task given by the FSA, but then eventually returned in 1946 and then stayed and settled on the island until his death in the late ‘90s. So throughout that entire time, he continued documenting the passage of time in Puerto Rico, and he also saw through his lens the reinforcement of the commonwealth, which is the current sort of political situation that we’re finding ourselves in right now, which in many ways is just another form of colonialism. Next slide, please.

The next one is of a slum called El Fanguito, a space that no longer exists due to gentrification. So, yeah, so, as you can see, he continued. As he was photographing these sites and the people on the island, he was at the same time creating a very rigid and very specific frame of who the Puerto Rican is, what they do. Next slide, please.

This one presents six women sitting down in a needlework factory, and they are working. They’re doing needlework in the factory. So, yeah, as you can see with this image, in particular, he’s already, again, cementing and creating this very specific frame of what is the role of the woman within Puerto Rican society. And if you can switch to the next slide ... Thank you.

This next slide shows a young man staring directly into the camera. He’s wearing a hat. He has a long-sleeve shirt, black pants, and he is in the middle of a sugarcane. And

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then, also, determined, like, the works that the men would do within the Puerto Rican society. So, I think, again, it’s really important to sort of talk about, again, how colonialisms sort of work in different facets, not only through eugenics, as you said, but also through the photography and almost this process of “otherization.” That’s a word that I literally just made up. So, yeah, I think it’s really important to sort of recognize the different ways in which colonialism can work within the Global South.

ALEX: Thank you for showing us these slides of Jack Delano and for really highlighting the ways that, you know, through researchers and photographers, you know, this imposed colonial lens really, you know, creates this limiting framework. And I think right now might be a good time to shift gears slightly and see some of your work. And I’m really excited to show everybody the ways that our work overlaps and how your practice really highlights the ways that colonialism produces disability through the different materials you use and your site-specific actions.

KEVIN: Alright, awesome. Thank you so much, again, for this. And could you pass the next slide, please? Thank you. So, the following images are going to be four images in color that all present a man covered with a blue tarp, and he is in different site-specific locations between Puerto Rico and the United States. So, this is from a series that I started working in 2018 titled Carryover (Blue Tarp Series), and I specifically wanted to reference the blue tarp, as it became a very iconographic symbol in Puerto Rico post-Hurricane Maria. So, you can go to the next slide, please. Thank you.

This next image is that same individual with the blue tarp covering his body. He’s on top of a colonial wall in San Juan, and in the background, you can see the sea and the sky. So, these tarps were given to families whose house had suffered a lot of damage, right after Hurricane Maria, particularly houses that lost a roof or lost portions of their house. And it was meant to be this temporary solution that would eventually then become an actual help to this architecture. You can go to the next slide, please. Thank you.

This next slide shows the same individual with a blue tarp covering his body. He is walking in front of a metal fence, and he is in Brooklyn, New York. So, this—obviously, the hurricane happened three years ago. Actually, on the 20th of September it’s going to be the third anniversary of the passing of Hurricane Maria. And I remember reading a couple of months ago the news in Puerto Rico with this staggering number, something around 20,000 to 30,000 houses that still have blue tarps as a replacement for a roof or for a wall in their houses. So, this, again, is just a representation of the treatment of Puerto Rico and its people, not only by the Puerto Rican government but also by the US government, specifically in a moment of crisis, you know. You can go to the next slide, please. Thank you.

This one is of the same individual on the Chelsea Piers, and he’s on top of several rocks. Then, on this one—this work, in particular, I wanted to sort of explore this idea of what happens when the body replaces a structure or, rather, what happens when the structure becomes—the body becomes the structure to protect. And so I started doing this action specifically between sites in Puerto Rico and in the United States to also reference my own experience and the experience of many, many Puerto Ricans who

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are diasporic individuals, and we sort of travel between the colony and the mainland. You can go to the next slide.

The following and last body of work that I wanted to share is titled Colonial Wall Push. This is from 2016, and it is a performance that I did about two weeks before I moved to the US. So, you can begin playing the video. Thank you. So, this action, this was a performance that was done at El Morro Fortress in San Juan, Puerto Rico, which is one of the many still-standing structures on the island that were constructed when Puerto Rico was still a colony of Spain. This architecture, in particular, was built by the natives of Puerto Rico—Borinquen, the Taíno, and African slaves. And throughout time, like many colonial structures, not only here in Puerto Rico but also in the United States, it has gone on to become—almost its colonial history has been muted and it’s then become a touristic place, which makes me think a lot about Vilcabamba and how is this place for people from First World to sort of come and rest and live forever, you know? So, in many ways, this was a way for me to sort of attempt and reactivate and try to reactivate this as a site of resistance by pushing and attempting to tear down this colonial wall that essentially perpetuates the colonial experience that Puerto Rico is still living to this day.

ALEX: Thank you so much, Kevin, for showing all of your work. And it’s really striking to me the way that, you know, in El Morro, the use of spectacle is used to erase the history of genocide and now it’s become this tourist site, this thing that you must go see.

KEVIN: Absolutely. And then, I think we’re almost about to jump to a Q&A, so I really wanted to share this last image. You can switch to the next slide, please. This is very near and dear to my heart. This image is of a sunset at a beach in Puerto Rico, and on the background, you can see a rock mountain which resembles that of a person, of a face sort of lying in the water. So, this image is ... Sorry. I just got the one-minute notice. Very quick. So, this is in Vega Baja, Puerto Rico. This is the beach in Vega Baja, Puerto Rico, which is the town where my mom was born and raised, and I think that she’s watching so, hello, Mommy. And this has been a space that I have been coming to since I was a little kid. And I remember I was very interested in this formation, but then eventually, my mom told me about the mythology behind this formation that is known as the Sleeping Taíno, or El Indio Dormido. And I remember when we were talking about your work of Acostado several weeks ago, it just took me to this structure, and I just think, yeah, this parallel to me is just so important because I really do feel that it’s through these mythologies that are created that are sort of folklore between the culture that are passed on orally. I think that that in a sense can be a very powerful resistance against the colonialism that is continuously happening on both of these locations. So, yeah, I just wanted to share that parallel that I found very ... Yeah, it was sort of like an “aha” moment when we started discussing the ideas and then, yeah, the history of these spaces.

ALEX: Yeah, thank you so much, Kevin. I really feel so special and magical for me to see these sleeping gods across different lands, and I remember when you said, “Oh, I know of another sleeping god mountain.” I was like, “Oh, my gosh.” And so it just feels really special to me. And I really resonate with what you said about, you know, the way

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that mythology and folklore, the passing down of these stories can be like a way of resistance against colonialism and, you know, keeping culture and history alive.

KEVIN: Absolutely. Absolutely.

ALEX: And I think right now we’re going to welcome back Ryan for the Q&A.

KEVIN: Yeah. Thank you. And thank you so much, Alex. It was such—Yeah, I completely adored our conversation.

ALEX: Thank you so much. Been dying to do this with you.

KEVIN: Absolutely. Likewise.

RYAN: Hi. Thank you both, Alex and Kevin, for that wonderful, riveting, riveting talk, and now we’re going to do more talking because we have questions from our digital audience. The first question is, “Do you think the practices of Western medicine, biomedicine, can be separated from its colonial foundations?”

KEVIN: Hmm. I—Yeah, go ahead, Alex.

ALEX: No, you go first.

KEVIN: I think—the first thought that came to my mind is that, you know, I feel that specifically in the US, there’s this intention constantly of trying to sort of bury history and sort of try to not acknowledge it, and, to me, the first step is to acknowledge, you know, the history of, you know, how was it this, you know—how did the birth control, for example, came to be approved in the 1960s in the US? You know, it came at the cost of many Puerto Rican women, you know, so ... I feel that the first step for this relation is acknowledging that colonial history.

ALEX: Yeah, I agree. Thank you for the question. I think it’s super important. Yeah, my immediate reaction is no, we can’t separate these things, cause we have, you know, so many different medicines, Western medicines. There’s, you know, such a—and there’s a history of, you know, nonconsensual testing on people of color and disabled people, and I don’t think that’s something that, you know, that should be erased.

RYAN: Okay. Thank you. Our second question is actually for me and you, Alex. It says, “Ryan and Alex, can you talk about the presence of grieving in your work?” Alex, you want to go first?

ALEX: Sure. I really like that question. For me, I think this personally relates to me kind of thinking about diaspora and the ways that ... How should I phrase it? You know, the ways that ... You know, I haven’t had, you know, the access to Ecuador in my own culture that I would have liked to have, and so, in a way, you know, part of this video for me is—I guess you could call it a grieving, as well. I mean, there’s so much joy in this video, as well, for me, but, you know, it was a way to work through a lot of the feelings I have of, you know, wanting to embrace my history and, you know, in this land.

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RYAN: I would say that I just think it’s such a universal part of the human experience. We all endure it at all moments of our lives, you know, from the time we have our first loss, which, for some, can be when they’re four and some can be when they’re six months old and some can be when they’re 15, 16, 20 years old. Family is super, super important to me, and my life changed the day that my maternal grandfather died when I was six years old. And that is a memory that is so vivid that now, you know, 20, 22 years later, losing my last grandparent, with several in between, I looked at my nieces and nephews, who were the age I was at the time of the first loss, and I said we’ve got to be intentional about the ways in which we move through our adult grieving process because they are going to remember this for the rest of their lives. So I don’t think it’s possible to make art about human life and not encounter grief at some points along the way. So that’s my response.

KEVIN: If I may, I also wanted to add that I think, in relation to both of your works, I also see a grief towards a land, you know, like, that I think is also so important cause so many of us in the diaspora experience that constantly. And I think, specifically, in this moment in time, you know, where there’s still a pandemic happening and the distance between our loved ones and us, you know, can be even, like, doubled, you know, during this time. Even though we’re now in a virtual world where we can have easier contact, I feel, at least for me, the distance between them still felt very—even bigger, you know, during this time.

RYAN: Thank you, Kevin. Next question. “Alex, was the resting quality of your film, the resting quality of your film—the fact that the point of view stayed still and waited and then moved on to new resting shots—intentional? I imagine so, and what does that resting mean to you?”

ALEX: Thank you for the question. Yeah, it was absolutely intentional. I really wanted the video, kind of, to function like a meditative experience, kind of, thinking a little differently about the ways that we usually view film. So I wanted to, you know, have people experience, you know, the audio in one language, then the next and see, you know, multiple captions at the same time, to sit for a moment with just bird sounds. And I ... Yeah, for me, that was both so much about exploring the materiality of access and also, you know, honoring both the land, ancestral knowledge, and also myself and my own needs, and, yeah, and creating this experience where we can, you know, contemplate our access points into the video and, you know, have a moment to slow down.

RYAN: Thank you so much. I’m seeing if there’s another question. Yes, there is. “Alex, can you tell us more about”—and you sort of just were doing this—“Can you tell us more about why you built captions in, in the form of bilingual captioning into the creation of the film itself?”

ALEX: I wanted to have all access in every form, but in both languages, and I felt like I hadn’t seen this, kind of, before in a lot of film. Like, if there was a film, it would have, like, the English translation and the Spanish translation. Those usually were separate things. So I’m sure a lot of people have done this, but for me, it was something that I

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wanted to see this happen to kind of see what can be created from that multiplicity of language and that multiplicity of captions.

RYAN: Wonderful. Let’s see. I think—is this—First, should I check the time? I think this might be ... Let’s see. One second. There are—Okay, here we have one. “What do you think that the sleeping gods are dreaming right now?”

ALEX: What are the sleeping gods dreaming? I imagine it as a way to ... I think I took sleep quite literally, in that I imagined, “What can I learn from the land? What does Mandango have to teach me?” And for me, it taught me to slow down, and, you know, that’s really hard in our capitalist society. So I felt like that was such a strong knowledge that I had to listen to from the sleeping gods.

RYAN: That’s beautiful. Kevin, do you have one?

KEVIN: I think they’re dreaming about a world full of resistance against colonialism and structures of power.

RYAN: That’s it. I think that is a beautiful note to end our Q&A on. We’re almost to the end of our program, so I just want to thank Kevin and Alex for the beautiful work that you shared, for taking the time to talk to each other and to all of us today, and congratulations on this extraordinary exhibit.

KEVIN: Thank you so much.

ALEX: Thank you so much, everybody.

KEVIN: If I may, I just wanted to add two last things. Please wear a mask, one. Two, register, go voting. Thank you so much. I love you guys.

ALEX: Want to say really quick that I’m looking at the chat, and I see so many other great questions here that I wish I could answer cause they’re so great, so I just want to acknowledge that, as well.

KEVIN: Feel free to reach out at us outside of the conversation. We’re happy to continue the conversation going.

RYAN: Yes, thank you so much for your questions and for your answers and your insight. It was so great to spend some time with you both. And we’ll hopefully talk again soon and see more work from both of you.

KEVIN: Thank you so much.

ALEX: Thank you so much.

RYAN: I’m going to close today with a little song. Ann Fox and Jessica Cooley, who curated Indisposable so beautifully, along with the Ford Foundation, and Lisa Kim and

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all of the wonderful staff, I mean, it was a great, great event. I’m so happy to have been a part of it, and I’m so grateful to all of you for joining us today.

So, Ann and Jessica saw my cabaret at Joe’s Pub in January, which was one of, I think, my last times on a stage prior to the pandemic, and they said, “We know, oh, you’re a singer. You have to sing.” Well, I’m an actor who sings, and, you know, I don’t have the voice of some of your greatest songsters in the world, but there was a song in the last months of my grandmother’s life that she requested for me to do because my grandfather Eddie, Gigi Eddie, used to sing it to her when he was alive. When they were home alone in the living room, they would sing together, where he would sing to her this old standard. And at first, when I first had an opportunity to sing for her in performance, I said, “Well, what do you want me to sing?” And she kept saying, “I want you to do ‘I Will Always Love You,’” and I said, “Nana, why are you asking me to do a Whitney Houston song? I do not have the voice to do a Whitney Houston song.” But then I sang an approximation for her, and she said, “That’s not what I wanted. I’m talking about a song called ‘Always,’ ‘I’ll Be Loving You Always.’” So I sang that for her on her deathbed in her last months and weeks and days, and I want to close tonight by singing it for you.

[singing] I’ll be loving you Always With a heart that’s true Always When the things you’ve planned Need a helping hand I will understand Always, always Days may not be fair Always That’s when I’ll be there Always Not for just an hour Not for just a day Not for just a year But always

Thank you. Have a great afternoon and a great evening. All our best to you here from the Ford Foundation, and we hope to see you again for the next installment of “Indisposable.” Bye-bye.

[on-screen text: Thank you for joining us! Please stay in touch for information on future events: fordfoundation.org/gallery and @fordfoundationgallery]

End of transcript.