CIIS Public Programs Podcast

TRANSCRIPT

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This is the CIIS Public Programs Podcast, featuring talks and conversations recorded live by California Institute of Integral Studies, a non-profit university located in San Francisco on unceded Ramaytush Ohlone Land. 

Alice Wong is an acclaimed disabled activist whose work and writing has shaped the modern conversation around disability. As the founder and director of the Disability Visibility Project, her work foregrounds the stories of those living with disabilities and paints a vibrant picture of disability media and culture. In her latest book, Disability Intimacy, Alice uses her distinctive voice to highlight and curate stories of intimacy. More than sex, more than romantic love, the pieces in her stunning and illuminating new anthology offer broader and more inclusive definitions of what it can mean to be intimate with another person.

In this episode, Alice is joined in a conversation with writer, educator and trainer for transformative justice and disability justice Mia Mingus. Their conversation about Alice’s life and work will free your thinking, invigorate your spirit, and delight your desires. 

This episode was recorded during a live online event on June 18th, 2024. You can also watch it on the CIIS Public Programs YouTube channel. A transcript is available at ciispod.com. To find out more about CIIS and public programs like this one, visit our website ciis.edu and connect with us on social media @ciispubprograms.

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Mia Mingus: Hi, thank you. It's so lovely to be here with everybody tonight. So I'm very excited because I was asked if I could basically interview/have a conversation with one of my friends and favorite people to talk to. So it doesn't even feel like work right now. It feels like a wonderful gift that's been given to me. Yes. And so I'm going to say, Alice, we just dive in.  Does that sound good? And I have a bunch of questions to ask Alice and I'm really excited for the conversation. We're hoping this can feel more like a conversation and less like an interview. So first off, Alice, it's so lovely to see you. I'm so happy to be here with you. What made you decide to create this anthology, Disability Intimacy: Essays on Love, Care and Desire? What drew you to the topic of Disability Intimacy?

Alice Wong: First I want to say hello to everyone in the audience and I'd like to thank the ASL interpreters and captioners and everyone at the California Institute of Integral Studies who made this event possible. I haven't participated in many live online events since I became a non-speaking person about two years ago, so please put up with my nervousness. I use a speech-to-text app to speak right now and there are times where I may mispronounce words.  It may take me a minute or two to type responses. I'm an Asian American woman wearing a long sleeved blue shirt with white pinstripes. I have a tracheostomy at my throat connected to a ventilator. I'm wearing a fierce red lip color. While we are gathered here online, there is an active genocide happening in Gaza by the Israeli Defense Forces. Palestinians are experiencing mass starvation, suffering, and disablement, not to mention the thousands of people who have been murdered. I am in solidarity with the people of Palestine who are fighting for their homeland and their right to exist. So, to answer your question, my first anthology, Disability Visibility, was a collection of stories from the 21st century that were all powerful, political, and personal. When I first envisioned my latest anthology a few years ago, I wanted it to push, expand, and subvert the meaning of intimacy from disabled perspectives.  Most books and other forms of media often only cover intimacy as romantic love and sex. Disability intimacy is a deep dive into a specific theme that excited me because I don't think there's anything out there quite like it, and I wanted to learn and grow my understanding of intimacy by editing these amazing stories. Currently society views disabled people as broken with lives of pity, dysfunction, and pain. When it comes to intimacy, our society has very narrow, rigid ideas of it usually limited to sex and romance based on white heterosexual norms. I have a feeling some nondisabled people might be uncomfortable or even disgusted by the idea of disability intimacy. Our culture can't wrap their heads around disabled pleasure, creativity, and sensuality. While this book is first and foremost for disabled people, it's going to blow the minds of nondisabled readers. And that's the power of our stories and culture. When I started working on this book, I Googled disability intimacy, and the search results from disappointing and pathetic. Under the people also ask section, questions such as can people with disabilities find love? Are what I considered basic as fuck. Articles on stereotypes, stigmas, sexuality, asexuality, sexual abuse, and sexual dysfunction abounded. Stories about and by disabled people on what it's like to date, have sex, or be in a relationship abounded. There is a preponderance of stories and coverage by the media about disability that dwell on stigma, discrimination, and barriers. When there are positive stories, they are often inspirational teachable moments to nondisabled audiences. These narrow portrayals perpetuate stereotypes and tropes, reducing disabled people into simplistic caricatures. As the editor of this anthology, it's important for me to show the diversity, complexity, depth, and nuance of the disabled experience. Disabled wisdom and joy comes from being in community with one another. We have a culture whether people believe it or not and this book is imbued with our joy, care, and love. Intimacy is more than sex or romantic love. Intimacy is an ever-expanding universe composed of a myriad of heavenly bodies. Intimacy is about relationships within a person's self, with others, with communities, with nature, and beyond.  Mia, in my other recent book events where I moderated a discussion with contributors, I start the conversation by asking each of them to share what intimacy means to them. I'm still figuring it out myself, and would love to hear what you think.

Mia Mingus: Thank you so much for all of that, Alice. I love this question. I don't know that I, like you, I feel it will be a lifelong journey, always learning about what intimacy is and is not. But, you know, it's interesting because intimacy is one of the things that I started writing about around disability really early on because I just feel like the impact and the cruelty of ableism of what it does, especially to our relationships and our ability to have relationships, is one of the most impactful, I think, and deepest -- I don't  know, just pain, I think, that I've experienced around being disabled. And that because isolation is such a cornerstone of the disabled experience and because able supremacy and ableism create that, as such, and it's not only stigma but it's, like, a distance, I feel like, that happens with disabled people – between disabled and non-disabled people but it can also happen between people with disabilities who have different types of disabilities. Access intimacy was the first time I started writing about intimacy. For me I would say intimacy is deeply rooted in being able to be or at least partially your authentic self, being able to be recognized to have that authentic self be recognized. Even if somebody doesn't know every single thing about you, but that they're able to see that and access intimacy for me has to always be a part of any kind of intimacy I have because I will never not be in a disabled bodymind and I will never not have access needs that are an integral part of my life that are not something I can put down or take off or not think about. And so anybody that I want to be intimate with or have intimacy with has to understand that as a baseline, hopefully. And that is to say as well that there are many different levels and manifestations of access intimacy that can, I have found, allow for deeper intimacies of all kinds in my life. So I would say that and I would say that because of the lack of access intimacy in this world, I actually don't know what the fullness of intimacy could look like for me because I am disabled among other -- many other identities. But thank you for that. And I wanted to also ask you another question. This question in particular I love but also I had heard from one of the organizers of this event as well just touch on how meaningful this was. But before the anthology even begins, Alice, and I think this is a part of the anthology and yet it also creates the context for the anthology, there is a dedication that you put in your book that says, “For me. For me I love you very much. You deserve everything.” And I think for many people this is a very powerful context to the book. A very powerful way to begin this. Why did you dedicate the book to yourself in this way?

Alice Wong: Mia, I turned 50 this year, and I think about how so many disabled people will never reach this age. Isn't it wild that I'm 50?  My body feels ancient and at the same time I don't feel old at all. There is so much I desire, Mia. I am bursting with ambitions and dreams that I want to make true. When I was working on the dedication, I wanted to keep it short and pithy.  Intimacy often starts with one's self and this is an acknowledgment of my love for myself which is still something I struggle with. The term self-love is so overused and there are times I have a lot of anger and resentment about my body. But there are times when I am proud of myself for not only what I've produced but proud of still being motherfucking alive which, as you know, is a real achievement. At the same time, I have a gigantic ego and love myself so much even if others don't find me desirable or loveable. With this dedication, I am signaling to other disabled people that they are worthy of everything and the world is theirs, or at least it should be theirs. The dedication centers disabled passions and I hope disabled readers will be delighted by reading it and think about how much they love themselves.

Mia Mingus: I love that so much, Alice. And I think especially -- especially for disabled people at large but especially for those of us who were disabled children, too, disabled babies and have never known anything different except the messages that the world and/or are families and/or communities have taught us or told us explicitly, the path and the journey and the practice of what it means to love ourselves and love ourselves as disabled people and just as you say, the intimacy in that is so profound. And I just love your dedication so much. It just felt like a little warm fire that started to grow inside of me and filled me up, so thank you. I also really loved your introduction and you begin the introduction writing about your intense and  life-altering experience in June 2022 which, as you write, quote, left you with a fundamentally altered body. End quote. You write how you "almost died more than once" and that it was "the most harrowing time of your life," continuing well after you got home. Throughout that time you talk about the "waves of love and care" that you experienced from friends and family.  Can you share a little more about this extended moment of Disability Intimacy, the impact it had on you and what it meant to you?

Alice Wong: Because of increasing weakness with swallowing and breathing I had a serious hospitalization two years ago resulting in a tracheostomy at my neck that's connected to a ventilator that I'm dependent on 24/7 and a feeding tube for nutrition and hydration. I can no longer speak and started using a text to speech app that you are hearing now. I had to heal and adjust to a radically Cyborg body with complex medical needs that no longer felt mine. I had to navigate unpleasant physical experiences that resulted in a number of trips to the emergency department. And by the way, I only recently have been identifying as someone with chronic pain because I didn't think I could claim it. Isn't that funny? It took me a long time to understand that what I've been living with isn't normal and that some of my suffering can be alleviated. I finally got a pain doctor and palliative care doctor.  Some of the medications I am on during a pain flair makes me extremely loopy. My texts to friends are jumbled and I can't do much the entire day except for watch TV and relax which is frustrating because in the back of my mind I'm running through all of my deadlines and things I am unable to do. Even on good days, much of my time is managing my body and my team of attendants. This past January I had a brief stay in the ICU that was horrific because my pain was not controlled and they would not allow me to bring my phone so I could communicate during a medical procedure which left me feeling powerless while I was in extreme pain. I continue to process trauma, loss, and feelings of shame about my body despite the innate confidence and healthy ego I possess in spades. These contradictions and tensions can hold true simultaneously. My memories of what happened two years ago have been very hazy. Time folding like a piece of origami into an abstract alien shape. I remember I wanted to edit another anthology after my memoir, Year of the Tiger, because I wanted to switch things up and do something different. Intimacy, as a concept, was something I wanted to explore and share with the world because I was irate and tired of the ableist tropes and stereotypes about disabled people who have sex. There is so much disabled wisdom and creativity that completely expands and blows up conventional understandings of intimacy. When I became seriously sick that summer, almost dying multiple times, I experienced such gentle waves of community care and love. I was at a very low point and needed so much help. My friends shared resources and information for me when I was still in the hospital and frantically trying to learn all this new stuff in my life. That year my memoir, Year of the Tiger, was coming out, and there was no way I could do any book promotion, so my friend, Sandy Ho, someone you also know, Mia, became the point person for all publicity-related requests and we were able to have other Asian American disabled writers moderate online book events on my behalf and it was an amazing way to promote my memoir and a clear example of community care. Overall, my friendships became more intimate and that deepened my understanding of intimacy. As I was trying to recover while having to deal with all kinds of new health-related problems, frustrations, and disappointments, I worked on the book which was a revelation. Editing an anthology is like wrangling a bunch of magnificent cats. It's so different from the writing a book on your own. With intimacy as the theme of this book, the contributors put such tender care into their work. I delicately edited these essays with sensitivity knowing how many people put their trust in me. And Mia, I was so delighted you were going to be a contributor for this book. You are an amazing writer, and I knew you could give the readers a deeply nuanced look at intimacy because it's not all roses and rainbows, you know? There's messiness and pain, too. I believe the relationships I built with the contributors during the editing process facilitated some magic that helped their pieces blossom. Working on this book was such a joy and part of my healing process. Being creative, collaborating with others, and building something beautiful together gives me life. It was a lifeline in the midst of pain and suffering. It's brought me a sense of gratitude that I'm still alive and have the privilege to work with so many talented people.  Initially in the making of this book I looked at intimacy intellectually as something to understand and learn from but disabled life fucked shit up and I experienced disabled intimacies in a raw, visceral, and truthful way. It's pretty wild and somewhat fitting that the convergence of these events led me to a deeper appreciation of disabled love, care, and intimacy. I have a question for you, Mia. What was your response when I invited you to submit an essay for this book? How did you come to the decision on writing about disabled heartbreak and how did you treat yourself as gently as you developed your essay?

Mia Mingus: Thank you, Alice. That is so beautiful. Well, my first response, of course, of course, when I -- you first reached out to me was without a hesitation, of course, yes, I would love to contribute to anything that you're doing! But I loved the idea of the anthology as well, and you know when I first started thinking about what I'm going to write for this, I thought a lot about, I could write about political theory kind of stuff. But then I thought, this is about intimacy, and to me, intimacy also requires vulnerability and is about being vulnerable. And so I thought, I would like to write about something that is more personal, I think. I mean, I write a lot about personal stuff in my writing anyways, but usually it's in the context of explaining a concept or something like that. I thought it would be so nice to write in a more personal way and to write about when I thought about it I thought what is more intimate that disabled heartbreak and particularly in disabled friendships. I think we are taught to understand heartbreak primarily through romantic and sexual primary relationships under a patriarchal frame of how that should look. It should be the center of a nuclear family. It should be all the things. It should carry the family name. You should raise children. You should have a house. All the -- and I think that heartbreak, at least in my experience, friendship, friend breakups, as I would say, friendship heartbreak has been some of the most painful, intimate, vulnerable, and scarring that I have experienced in my life, and I think it's similar to what you were kind of getting at in one of your answers as you were replying. I can only speak for myself, but the way that I think about friendship I think is deeply impacted and shaped by being a disabled person. And by being a disabled person who needs help, who needs assistance, who has to live an interdependent life whether I like it or not and how that impacts my friendships. I think queerness, being a queer person also deeply impacts that as well, the parts of queerness that have nothing to do with sexuality or who you're sleeping with but have everything to do with creating and valuing new and different kinds of relationships that don't exist under patriarchy but that are in a more liberated landscape free sense of what could be, what we can imagine in the kind of world we long for and want. It was hard to write that essay. I don't know that I -- I treated myself as gently as I possibly could while still working under capitalism and an inordinate amount of chronic pain every day, but it was also very cathartic to write it and I feel definitely very vulnerable in sharing about it, and so I had some of those nervous, vulnerable moments of, like, what have I done? But it also -- I think those are the right moments. That's when you know you're probably heading in the right direction. So I feel really happy that I wrote it. And I really thank you for giving me the opportunity to do that. And speaking of disability intimacy, I would also love to hear what disability intimacy has looked like in your life before June of 2022 and what are some of your most potent memories of disability intimacy?

Alice Wong: We are still in a pandemic and in many ways we are more unsafe compared to when it first emerged in 2020 since public health has been decimated and the government no longer requires hospitals to report death due to COVID. So we don't have accurate data, we have a crumbling public health infrastructure. Masking has become political when it shouldn't be, and a whole bunch of other horrible things. I am a high-risk disabled person because wearing a N95 mask is ineffective for me since I cannot breathe through my mouth or nose.  There is a bacterial filter attached to my ventilator but it cannot protect me from all airborne pathogens. I depend on others to mask to keep me safe. This illustrates one of the principles of disability justice: Interdependence. I was isolated for at least 3 years and missed out on so many opportunities to socialize and be with my friends but this was a necessary sacrifice since I will not be able to survive a COVID infection. At the time I lived with my parents, two older adults who are also high risk. Much has been said about the detrimental effects of isolation and lots of nondisabled people freaked out when for the first time many had to face restrictions that disabled and sick people have been accustomed to well before the pandemic. We have the skills and ability to adjust to this new normal understanding that we can't go back, that there is no such thing as a return to normal no matter what the government tries to tell us in an attempt to restart the economy. I was lonely but I was not alone. In many ways, what I experienced in the beginning of the pandemic planted the seeds of this anthology when it comes to the ways I remained connected and felt such love remotely.  My friends and I had Zooms and I sent snacks to everyone ahead of time and we had afternoon tea together. On Twitter, I mentioned how I was in lust with this one baker who made small batches of bask cheesecake. One completely random stranger who also lives in San Francisco offered to pick up one for me, can you believe it? Another experience that was so touching to me was my friend Emily Nusbaum who picked peaches with a group of friends at an independent Japanese owned farm. She dropped off a flat of peaches and nectarines, which was such a gift. I yearn to be outside and do things but she brought the orchard to me. I wrote a chapter about Emily and these amazing peaches titled in praise of peaches. In my memoir Year of the Tiger. I’m going to read a short excerpt. “Being outdoors in the sun and open air, was unsafe for multiple reasons, with my only outing after lockdown being in October after a drive-through flu vaccine. The need for pleasure and deliciousness, coupled with predatory scarcity and fear prompted me to savor the simple things that are within my grasp and dream about what I missed. Eating a fresh Elberta peach is indeed a magical spiritual experience. Flesh is firm and brimming with juice, sweet yet not overly ripe or tart, and its skin is not too fibrous so I can gobble it easily. Cool, Succulent, Lucious. When I bite into one, I am connected with the infinite cycles of life and death that produced this fruit, the hands that picked and packed it, and the family and farmworkers who nurtured it. The pandemic contracted and expanded my unstable world. But tasting that peach took me through a wormhole of joy. It eased my heart and gave me peace. Emily brought the best of the summer to my indoor, socially distanced world. Our friendship is one of many examples of interdependence and mutual aid in the disability community. Pandemic notwithstanding, I wouldn't have the energy or ability to spend an entire day traveling to the farm and harvesting with team peachful easy feeling. This knowledge and the months of staying inside weighed on me as I devoured these peaches with my parents who also have high standards for fruit. Ever since, we reminisce about these peaches as if they were long-lost friends whom we can't wait to see again next summer. Sometimes a peach is just a peach. Sometimes a peach is a cosmic portal to relationships that sustain and tie us to one another.” I would say being able to taste, not swallow, peaches from Masumoto family farm delivered to my front door by my friend was one of the most potent memories of disability intimacy. It's a memory that I cherish now as I rarely taste things, not even a small sip because I choked a few times. And choking can cause aspiration which in turn can cause aspiration pneumonia which is not good for my breathing. Every taste, every breath is precious. So are the friendships that became stronger during the pandemic. This may be true for a lot of people, but you really discover who is going to show up for you during rough times. People really show who they are, and I am so grateful that I have friends who I can text silly memes and gifs and share the fears and loneliness when it seemed like the first vaccines wouldn't be distributed equitably. Mia, you are one friend I go way back with. One of my favorite photos of us was from several years ago when I only had a mask over my nose to help support my breathing. You introduce me to one of your favorite local bakeries, Sweet Adeline, in Berkeley and their amazingly rich, dense, and delicious chocolate cream pie that had about two or three inches of whipped cream on top. I have a photo of us with several desserts on a table living it up. We aren't in touch often now but that doesn't matter because whenever we text each other again or send a card in the mail, it's like we just picked up where we left off. My question to you is about your relationship to nature. I believe there's an intimacy we have with our environment and I know you love gardening. Can you share more with the audience about your relationship to gardening and what the practice of gardening means for you.

Mia Mingus: Now I want a peach. I want a delicious peach. Thank you so much for that beautiful, beautiful answer, Alice. I do love gardening and I do love nature. And it's so funny, too, because I feel like both of those things can be things that are hard to access, and maybe it's just my experience. It can be hard to make it accessible for disabled people. But the practice of gardening and gardening itself means so much to me. I mean, I think also, you know, I think any aging disabled person, particularly those of us with mobility impairments, like, you know, you got to move your body, and gardening for me has been a way that I can move, that if I make it accessible it's very accessible for me. I can't run miles or anything like that or go jogging, but gardening is so fulfilling, I mean, on a practical level because I get to feel my body in a different way and move, but I love, I love flowers and growing my own food. And I love feeling close to nature and the earth. And I think, you know, I grew up in a very very very rural place and the natural world, it's a part of us, of me. I grew up with trees that feel like they are part of my family and relatives and friends. And so gardening feels like that. It feels like I'm able to be with myself and be with the natural world in a way that especially with so much technology it's hard I think sometimes. So, yeah, I love it, though. And I especially I love it particularly as a disabled person of color, as an Asian person, too, because gardening -- growing things is very deep in our genes, no matter where my parents are, they are growing things, even if it's just in a bucket on the cement stairs. So thank you for that. And this next question is one that sits close to my heart because I'm always interested in the relationship between death and disability. And I think this is a kind of disability intimacy that colors so many disabled people's lives. The essay in the love and care section, The Last Walk by Melissa Hung, which is such an utterly beautiful example of death and intimacy, as well as the intimacy of death. I remember when I was reading it I got chills and had tears, it was such a beautiful essay. Whoever you are, wherever you are out there, Melissa, it was amazing. Thank you for writing that. But in your introduction, you write that "death is an intimate partner of mine. The relationship I have to death, dying, and suffering is inextricably linked to how I want to live." Can you share more about your relationship with death, dying, and suffering and how it's linked to how you want to live?

Alice Wong: I love these deep questions, Mia. I don't think disabled people have any very special lessons or takeaways for nondisabled people on how to live life to the fullest, but I do believe we have wisdom, knowledge, and skills on how to not just survive but thrive. And for me, being in community with others has taught me so much. Having friends who get it and friends who share specific tips and resources has literally saved my life. Being disabled in a non-disabled world means a life steeped in precarity and vulnerability. I've written about my experiences during the pandemic as a high-risk person and relying on Medicaid in the past.  Like millions of other disabled people, I am always one step from institutionalization, serious illness, or death. It sounds morbid, but I think about death all the time. I am in a race against time. I knew I was disabled my entire life. I knew I was different. I moved slower and couldn't keep up with the other kids. My neck muscles were so weak that I couldn't raise my head when crawling. Mom told me that I went from sitting to standing and walking because I couldn't support my head. I was diagnosed with an undetermined type of muscular dystrophy as a toddler, and doctors told my parents I wouldn't live to become an adult. My immigrant parents cried when they heard the news. Even though this news was devastating, they never treated me like a fragile egg about to break. Up to the age of 7, I could still walk, albeit a wobbly slow walk. I would lag behind as my classmates lined up and walked to gym or art, they would assemble in two lines, and my first grade teacher, Mrs. Shrock, would lead them to their destination and sometimes would be just me left behind in the hallway, slowly making my way alone. One memory that will always stand out from all my many enraging, traumatic, discriminatory, bullying and embarrassing experiences during 12 years of primary and secondary education was a day when Mrs. Shrock asked me to be at the front of the girls' line and when she guided both lines-of-students to another part of the school she held my hand and supported me as I slowly walked alongside her. Walking together in tandem, adult child, nondisabled disabled, teacher student. We set the pace for the entire class. I have not felt that seen, safe, or cared for by a teacher since. During the beginning of the pandemic, I wondered how Mrs. Shrock was faring and if she retired. I sent her a copy of my anthology Disability Visibility with a thank you note. In her reply she wrote, “the power of perseverance was always present as we walked hand in hand wherever we went. One day as we entered the cafeteria you said, Mrs. Shrock, am I going to die? We kept walking for a few seconds. And I said, no, you aren't going to die. I knew at that moment that you were always figuring things out at a much deeper level than those around you. I am so very proud of all the things you have done for others.” Doctors told my parents that I wouldn't live past 18, so I grew up unable to imagine an adult Alice, always thinking about death. Isn't that wild? I am so angry for the first grader Alice who had to deal with such existential dilemmas and heavy thoughts that she didn't share with anyone. It was only later, many decades later, realized holy shit, I am my wildest dream. The dream is not about overcoming a disability. The dream is about looking straight into the abyss and creating something out of nothing. I never intended to be an activist. But my life has always been political. I cannot escape it. I have lived this every day ever since I was a child who had to grow up fast, a child of immigrants advocating for herself to teachers and doctors. When I became older and understood white supremacy, ableism, and structural oppression, I realized the fight was not just for myself but for everyone marginalized and devalued by institutions, systems, and practices. It is the epitome of privilege when people say they are nonpolitical. One only has to see how COVID minimizers and misinformation gaslight people with long COVID and renders high-risk marginalized people disposable. My recent near-death experiences reaffirmed how fragile everything is. I dream of a day when I can just be and it would be enough. I wish for all disabled people the choice of becoming an activist rather than being forced to as a means of survival. During my hospitalization two years ago, I lost sensation in my bladder so now I urinate through a catheter 4 to 5 times a day on top of having a tracheostomy and feeding tube. Those weeks in the ICU were like a fever dream. I couldn't sleep for days because every time I closed my eyes I feared I would never wake up. I was in tremendous pain and could only communicate by mouthing words to my sisters or scrawling on a pad of paper. In the few moments I could write, I outlined instructions to my sisters on what to do if I didn't make it. Was this the way I would die? It was my closest brush with death in a series of many, but I lived to tell another tale. And I was determined to claw my way forward to another day. The amount of maintenance and administrative work it takes to be disabled in America has also taken a toll, the additional out-of-pocket home care that I need now is $840 a day. With the donations from my GoFundMe dwindling, managing and directing a team of caregivers for my daily activities requires a lot of forethought and clear communication. Being disabled in a nondisabled world is precarious. One of constant adaptation. I remade myself into a new Cyborg form that still has a voice, a breath, and a will to live. Right now as my body is at its lowest point, I'm at the height of my powers. I have never been more happy, free and resolute to what I want to do. When I turned 50, I was filled with mixed emotions. I dread what lies ahead if I reach 60. Will this be my final decade of life? Maybe it's okay that I can't predict what will happen or what the future will hold since no one can. What I will do is spend my time, energy, and labor intentionally with the people I care about. As I mentioned earlier, I have so many things I want to do. I like to challenge myself and constantly grow and open myself to new experiences. It's often risky, but there's a lot of excitement and joy in exploring the unknown. This is probably considered wide old fashioned but Google Docs and spreadsheets help me with projects I want to pursue. You know how sometimes you suddenly get a fantastic idea and then it vanishes? I have so many ideas and plans that I am afraid of forgetting so my Google Drive has folders for book ideas, grand ambitions, and other projects that may or may not come to fruition. I will also surround myself with pleasure and abundance. I will host dinner parties, make chili crisp for my friends, and spoil my cats Bert and Ernie. I will treasure every breath pushed through my ventilator and be grateful to have a rare night's sleep without pain. And most importantly, I will try to rest and care for myself. Death remains my intimate shadow partner. It has been with me since birth, always hovering close by. I understand one day we will finally Waltz together into the ether. I hope when that time comes I will die with the satisfaction of a life well lived, unapologetic, joyful, and full of love. That's the plan, at least, Mia. The last two years of my life have been so chaotic and actually most of my life has been chaotic and it's my hope that I will not have any regrets and treat myself to everything life has to offer. I have no idea if I answered your question, Mia, but maybe it was somewhat useful. Hahaha. Since we are almost done, can you skip to the next question, Mia?

Mia Mingus: Definitely. I was wondering, would it be okay to go to the Skin Hunger question?  Ok. Because I love S.E. Smith's essay skin hunger and the taboo of wanting to be touched. It just resonated so deeply with me and it made me think of the intimate experience of lack of intimacy that all disabled people experience. I think this is true across all forms but Smith describes with such tenderness and vulnerability and clarity in so many of these essays there is a common through line of longing and loneliness in all its many forms. Whenever I talk about intimacy, care, joy, community, or love in the context of disability, I'm always acutely aware of how much grief and pain it brings up and holds. The deep contradiction of how magnificent it is to hear about disabled love of all different kinds, for example, and how so many or most disabled people don't get to experience that. The way it can be almost more painful to read about -- sorry, the way it can be almost more painful to read about, for example, the wonderful parts of disabled community if you are not a part of it as is the case I think for most disabled people. What do you think about this contradiction and was it something you thought about when putting this book together?

Alice Wong: I did not want a cheery overly positive depiction of disabled intimacy. I wanted to delve into the contradictions and tensions. And I am intentional about challenging readers even making them feel a bit uncomfortable because intimacy is a complex concept and I am not catering to expectations of an easy breezy uplifting inspirational book because real life is not like that and it's definitely not like that for disabled people in such a harsh ableist eugenic world that wants us to disappear from public life such as for example, the harassment and ridicule high risk people get in public for wearing a mask. I want these essays to confront the reader's own discomfort and mixed feelings about intimacy and have them think about their own relationship with intimacy and possibly their own internalized ableism, whether they are disabled or not. S.E. Smith is a journalist and essayist based in northern California and they are someone I followed and read for many years. Before social media I used to follow their blog just to let you know how I'm such a long time fan of S.E. Skin Hunger is a term used by many people in the disability community to describe a very real need, a strong craving for touch that disabled people experience. Their essay strongly resonated with me as well because I don't have a partner or someone I am involved with that gives me pleasure and I crave the stimulation from touch whether it's an arm around my waist or fingers running through my hair. And it's not easy to write about it because our society makes many people feel like losers if they are still virgins or aren't in a relationship as if that's validation that they are real, more experienced, grown up adults. And fuck all of that shit. You are correct that one of the throughlines is longing and loneliness, and I would also add tenderness. Any discussion of passion, love, romance, and all that stuff has to also include the not so shiny aspects, and for me this is all about keeping it real. I really hope that disabled readers will feel seen or at the very least a spark in their understanding of intimacy. Like S.E., your essay, Mia, is something I consider part of the contradiction of this book. When you proposed an essay on disabled heartbreak, I was really touched by this subject. It's not something that's talked about within our community, and I knew it was going to be powerful and moving. Mia, would you like to read a short excerpt and before you read it, can you share a little background on how this essay came together? This would be a lovely way to end our conversation because I want people to have a sample of your brilliance.

Mia Mingus: Thank you, Alice. Yes, I'd be happy to read an excerpt and I guess the only background I can say is that this is definitely one of the biggest heartbreaks of my entire life. So this is an excerpt and it's from two pieces in the short piece that I wrote called disabled  heartbreak. So it starts off with the piece from -- so a lifetime of longing. “I don't know disability through anything other than my own life. I only know how I longed for you long before I met you. How you were something like Mirage. How you thought the same of me, because we had been endlessly traveling through the desert, we had been banished too, by a world that lost its way. I only know how I had never seen a mirror, so I made do with muddy puddles and the ever moving current of the river. I became what was needed to survive, part chameleon, part magician, part housewife, part scavenger, and so did you. Maybe reflections aren't supposed to become real. Maybe they're always better as Mirages. Maybe then they will never have the chance to reflect the sun's rays as a weapon. A beating heart at the mercy of a magnifying glass. Maybe then they will never learn how to burn. Why do we burn each other alive? Why do we take our best swings in an embrace? Sometimes I still wish I could ask you, why? Why did you leave our home to burn? Why did you not help to put the fire out? Why did you watch me wipe the soot from my sweaty brow again and again, my clothes riddled with ashes and burns as I raced to grab another bucket of water to throw at the flames? Sometimes I can still hear the pop and snap, smell the stench of the smoke, feel my heart beating inside my chest. Sometimes I can still see you sitting there, frozen in your shame and stubbornness, lost in your pride and fearful safety. I walked through the ruins after it was all over. I sifted the rubble and found all that remained. A heart I made for you. A day spent in the redwoods. A week in the lemony sunshine. Baked goods. A thousand calls and a million more laughs. A fold-out table, a small bundle of thyme, and two cafes. And again I waited. Holding the blackened treasures in my arms to share with you, give to you. To grieve together all that had been lost. To rebuild together. Sometimes hope can be the cruelest teacher. The cowardice of shame. I remember watching you run and hide behind a clump of bushes once as I passed by years later. I was still holding on to hope then, too, even after everything terrible had happened. I didn't know that there was still more of my heart that could be broken, a lesson I would learn from you again and again and again for years to come. I was foolish and I still believed that you believed in the words you would spout about love and friendship and how much I meant to you. I wish you could have shown up for me, for us, for yourself. I wish you could have been able to turn and face us, even if just to say goodbye, even if just to help close the wounds, both mine and yours. Every time I think of you, I think of the cowardice of shame and the cruelty of silence. Every time I think of you I remember how mean you were and how much I loved you. Knowing someone's unhealed trauma can be a kind of poison. A fire burning in a sealed room. Sometimes I wonder what you looked like when you received my two letters in that first year. If you took them for granted. If you tucked them away like you did your heart. Maybe you wished I would reach out one last time bridging the cavern you put between us. Crossing the rapid and traversing the stone and thorns, trying to see through the darkness. Shivering from the storm, breathing with exhaustion from the journey. I tired fist knocking on a heavy door. Why did you always leave that work for me? It was treacherous and terrifying. Why did you not face fear and leap, too? This question breaks my heart. Watching someone starve from want of connection and care is nothing to forgive. A full plate of food seen and smelled from inside a cage. Perhaps you were starving yourself, too, but you also know what it means to be disabled. You also know that disabled loneliness is a kind of loneliness that can only be understood by fellow disabled people. You also know how cruel it is to lock disabled people out of disabled community. We experienced that together from another queer woman of color -- queer disabled woman of color and vowed never to do the same to each other. Why did you break that vow?” Thank you Alice. Thank you so much for this beautiful conversation and for inviting me to come and be part of this with you and for writing this magnificent book and inviting so many of us to be part of it. Thank you to everybody who was part of making this book. Thank you to everybody who has been part of making and putting this event together. And I wish just love and peace for everyone around the world, especially all of the disabled folks who are finding their way through the world today. I love you, Alice.

Alice Wong: Thank you so much for having me. Goodnight, everyone.

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Thank you for listening to the CIIS Public Programs Podcast. Our talks and conversations are presented live in San Francisco, California. We recognize that our university’s building in San Francisco occupies traditional, unceded Ramaytush Ohlone lands. If you are interested in learning more about native lands, languages, and territories, the website native-land.ca is a helpful resource for you to learn about and acknowledge the Indigenous land where you live.

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