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They bask in what it means to feel truly seen and celebrate the personal and collective change that intimacy creates.\u003c/p>\n\u003cp>Wong dedicates the anthology to herself, writing, “I love you very much. You deserve everything you desire.”\u003c/p>\n\u003cp>Wong spoke with KQED Forum’s Mina Kim about her hospitalization and why she focused this collection on intimacy. Wong describes disabled persons’ stories of “love, care and desire” as necessary for combatting long-oversimplified narratives — and for expanding our collective understanding of what intimacy really means.\u003c/p>\n\u003cp>\u003cem>This interview has been edited for length and clarity.\u003c/em>\u003c/p>\n\u003cp>\u003cstrong>Mina Kim: \u003c/strong>What did it mean to you to edit this anthology in the aftermath of hospitalization?\u003c/p>\n\u003cp>\u003cstrong>Alice Wong:\u003c/strong> I turned 50 last month, and I’ve been reflecting a lot about the past. It’s amazing how much I have changed in the last 10 years and even in the last two years when \u003cem>Disability Intimacy\u003c/em> first came about. My memories of what happened two years ago have been very hazy; time folded like a piece of origami into an abstract alien shape. The book proposal for \u003cem>Disability Intimacy\u003c/em> was accepted in early 2022 before I was hospitalized that summer, which turned out to be the most horrific and traumatic time of my life. …\u003c/p>\n\u003cp>When I became seriously sick that summer, almost dying multiple times, I ended up with a radically different body. I experienced such gentle waves of community care and love. I was at a very low point and needed so much help. My friendships became more intimate and that deepened my understanding of intimacy. …\u003c/p>\n\u003cp>Working on this book was such a joy and a part of my healing process. Being creative, collaborating with others, and building something beautiful together gives me life. Editing this collection and the “Low and Slow” series for Eater.com gave me something to focus on; it was a lifeline in the midst of pain and suffering. Overall, it’s brought me a sense of gratitude that I’m still alive and have the privilege to work with so many talented people.\u003c/p>\n\u003cp>\u003cstrong>What did you find when you Googled ‘disability intimacy’?\u003c/strong>\u003c/p>\n\u003cp>The Google search, if that is a barometer of mainstream social attitudes and values, turned up articles on stereotypes, stigmas, sexuality, sexual abuse and sexual dysfunction. Stories about and by disabled people on “what it’s like” to date, have sex or be in a relationship abounded. I rolled my eyes so hard at them because it’s so basic, ableist, and vanilla, if you know what I mean.\u003c/p>\n\u003cp>Disabled people are so innovative and creative in the ways they express intimacy because we live in an ableist world with such narrow, conventional ideas of intimacy. To me, intimacy is more than sex or romantic love. Intimacy is about relationships within a person’s self, with others, with communities, with nature and beyond. Intimacy is an ever-expanding universe composed of a myriad of heavenly bodies. It’s my hope that readers of my anthology will question their own ideas of intimacy and their relationships with it.\u003c/p>\n\u003cp>\u003cstrong>What’s your relationship with your voice today?\u003c/strong>\u003c/p>\n\u003cp>So there’s the physical voice, speech and sounds we make with our body, and voice in the broader sense, about your perspective on the world. I detest advocates who say they are “a voice for the voiceless” because everyone has a voice; it just might be in a different medium, and it’s our responsibility, if we actually care about diversity, to make an effort to listen and meet people where they are. And this is especially true for radio. I continue a voice through my writing as a columnist for \u003cem>Teen Vogue\u003c/em> and other projects, but my physical voice no longer exists since I now have a tracheostomy in my throat that is connected to a ventilator that I am dependent on 24/7.\u003c/p>\n\u003cp>I miss my physical voice. I was a really funny, witty speaking person. I wish you could have known me a few years ago, Mina, but I can’t go back; I can only go forward in this disabled cyborg body that is still alive and kicking butt. The way I express myself will never be the same. …\u003c/p>\n\u003cp>I would characterize my relationship to voice as fraught. I’m thankful to live in an era where I have an array of assistive technologies I can choose from — and at the same time, I struggle being heard, seen, and respected in my new non-speaking corporeal form. In one-on-one conversations, there is so much I want to say, and most of my friends are patient with me when I type a response, but there are times it takes minutes. I worry about them losing interest while they wait for me as I frantically type. My conversations have fundamentally changed. I find myself saying less, skipping certain parts of what I want to say, and becoming more succinct. …\u003c/p>\n\u003cp>I have lots of hot wisdom to drop, and I am determined to express myself fully without pressure. I still have a voice; I still have my words, but I have to undo the feeling of resentment of my present state at the way I present myself to the world that is shaped by forces beyond my control.\u003c/p>\n\u003cp>\u003cstrong>On her book’s dedication to herself.\u003c/strong>\u003c/p>\n\u003cp>I have a gigantic ego and am full of confidence about a lot of things, but I am also a puddle of insecurities, loneliness and self-doubt. Growing up disabled, I was made to feel a lot of shame and marginalized to the point where I questioned whether I belonged in many spaces. I think a lot of people feel that way whether they are disabled or not. It’s easier for me to love others than myself, so I just wanted to declare how much I love me and how I want all of my dreams to come true. Because let me tell you, Mina, I have plans to conquer the world. Insert evil laugh, ha ha ha.\u003c/p>\n\u003cp>\u003cstrong>On her ‘intimate partnership’ with death.\u003c/strong>\u003c/p>\n\u003cp>I turned 50 recently, and it was a real head trip. For \u003cem>Time\u003c/em> magazine, I \u003ca href=\"https://time.com/6960765/alice-wong-muscular-dystrophy-essay/\">wrote a piece \u003c/a>reflecting on all I have gone through and what my uncertain future holds. Doctors told my parents I wouldn’t live past 18, so I grew up without any dreams or images of a grown-up Alice. I could not see a future for myself, so I had to make one on my own. I had to will a pathway into existence.[aside label='Related Coverage' tag='disability-community']In my memoir, \u003cem>Year of the Tiger\u003c/em>, I wrote an essay about my first-grade teacher, Mrs. Shrock. In a note to me several years ago, she remembered one day in class, I asked her if I was going to die. And she said no, not now. I had no memory of that, but as I am typing this answer, I am tearing up thinking about it. Such heavy existential questions and fears preoccupied little 6-year-old Alice’s head. Death has always been a shadowy presence as someone with a progressive neuromuscular disability.\u003c/p>\n\u003cp>I have gone through lots of scary medical moments in my life, most recently this past January when I went to the ER. I was shocked to see so many health care providers without a mask or only wearing a blue surgical one that does not protect from airborne pathogens as effectively as an N95 mask. … It’s exhausting to be sick or disabled and drives me wild that many health care settings do not have mask mandates even though immunocompromised and high-risk patients have to go in for treatment. We’re still in a pandemic, even though our elected leaders would like us to forget that. No one should risk their lives when seeking health care.\u003c/p>\n\u003cp>The ER visit resulted in a one-day stay in the ICU, where I did not receive adequate pain relief during a procedure, and my communication device was not allowed in the room. I was powerless, crying nonstop, and unable to tell the nurses and technicians what was wrong. It was terrifying, and moments like these, where I am vulnerable and treated less than human, I wonder if I will die.\u003c/p>\n\u003cp>Not to be a downer for your listeners, but I think about death a lot, and it’s a constant in my life, a dance partner that takes me on a few too many dips and twirls for my liking. Death is an intimate partner of mine, and it makes me appreciate life. I make the most out of every day, celebrating, loving, and caring for my friends, family, and two cats, Bert and Ernie. Even though I am in a race against time, I am having as much fun as I can every single day, such as this conversation with you.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n","stats":{"hasVideo":false,"hasChartOrMap":false,"hasAudio":false,"hasPolis":false,"wordCount":1739,"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"iframeSrcs":[],"paragraphCount":29},"modified":1714768207,"excerpt":"Alice Wong, activist and director of the Disability Visibility Project, discussed her new anthology 'Disability Intimacy' on KQED Forum. It explores relationships and community bonds through essays and poems.","headData":{"twImgId":"","twTitle":"","ogTitle":"","ogImgId":"","twDescription":"","description":"Alice Wong, activist and director of the Disability Visibility Project, discussed her new anthology 'Disability Intimacy' on KQED Forum. It explores relationships and community bonds through essays and poems.","title":"Alice Wong’s 'Disability Intimacy' Is a Deep Dive into Relationships and Community | KQED","ogDescription":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"Alice Wong’s 'Disability Intimacy' Is a Deep Dive into Relationships and Community","datePublished":"2024-05-03T14:00:13-07:00","dateModified":"2024-05-03T13:30:07-07:00","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"True","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"guestAuthors":[],"slug":"alice-wongs-disability-intimacy-anthology-is-a-deep-dive-into-relationships-and-community","status":"publish","audioUrl":"https://traffic.omny.fm/d/clips/0af137ef-751e-4b19-a055-aaef00d2d578/ffca7e9f-6831-4[…]f-aaef00f5a073/a31c3add-e921-47a3-b21f-b1640176a4b1/audio.mp3","excludeFromSiteSearch":"Include","sticky":false,"articleAge":"0","path":"/news/11984990/alice-wongs-disability-intimacy-anthology-is-a-deep-dive-into-relationships-and-community","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>When Alice Wong — activist and founding director of the \u003ca href=\"https://disabilityvisibilityproject.com/about/\">Disability Visibility Project \u003c/a>— began conceptualizing the new anthology, \u003cem>Disability Intimacy\u003c/em>, she Googled what would become its title.\u003c/p>\n\u003cp>What she found was “basic AF” and made her go, “Ewwwwww.” So, she commissioned and collected writing from disabled people about what intimacy meant to them for the anthology published this week.\u003c/p>\n\u003cp>Shortly after Wong received the green light for this anthology in 2022, she developed aspiration pneumonia compounded by a collapsed lung. She was hospitalized for a month and emerged from the intensive care unit profoundly changed.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Wong — who has edited multiple anthologies, including \u003cem>Disability Visibility\u003c/em> and \u003cem>Low and Slow\u003c/em>, a series of food writing by disabled people — described working on this anthology in the aftermath of that hospitalization as a “critical lifeline just like the breaths of air from my ventilator and liquid nutrition flowing into my feeding tube.”\u003c/p>\n\u003cp>The anthology’s first-person essays and poems reflect on friendships, parent-child bonds, romantic and sexual relationships and disability communities. They cherish the love and care their authors give to others and themselves. They consider the sensation of touch from loved ones and health care workers alike. They bask in what it means to feel truly seen and celebrate the personal and collective change that intimacy creates.\u003c/p>\n\u003cp>Wong dedicates the anthology to herself, writing, “I love you very much. You deserve everything you desire.”\u003c/p>\n\u003cp>Wong spoke with KQED Forum’s Mina Kim about her hospitalization and why she focused this collection on intimacy. Wong describes disabled persons’ stories of “love, care and desire” as necessary for combatting long-oversimplified narratives — and for expanding our collective understanding of what intimacy really means.\u003c/p>\n\u003cp>\u003cem>This interview has been edited for length and clarity.\u003c/em>\u003c/p>\n\u003cp>\u003cstrong>Mina Kim: \u003c/strong>What did it mean to you to edit this anthology in the aftermath of hospitalization?\u003c/p>\n\u003cp>\u003cstrong>Alice Wong:\u003c/strong> I turned 50 last month, and I’ve been reflecting a lot about the past. It’s amazing how much I have changed in the last 10 years and even in the last two years when \u003cem>Disability Intimacy\u003c/em> first came about. My memories of what happened two years ago have been very hazy; time folded like a piece of origami into an abstract alien shape. The book proposal for \u003cem>Disability Intimacy\u003c/em> was accepted in early 2022 before I was hospitalized that summer, which turned out to be the most horrific and traumatic time of my life. …\u003c/p>\n\u003cp>When I became seriously sick that summer, almost dying multiple times, I ended up with a radically different body. I experienced such gentle waves of community care and love. I was at a very low point and needed so much help. My friendships became more intimate and that deepened my understanding of intimacy. …\u003c/p>\n\u003cp>Working on this book was such a joy and a part of my healing process. Being creative, collaborating with others, and building something beautiful together gives me life. Editing this collection and the “Low and Slow” series for Eater.com gave me something to focus on; it was a lifeline in the midst of pain and suffering. Overall, it’s brought me a sense of gratitude that I’m still alive and have the privilege to work with so many talented people.\u003c/p>\n\u003cp>\u003cstrong>What did you find when you Googled ‘disability intimacy’?\u003c/strong>\u003c/p>\n\u003cp>The Google search, if that is a barometer of mainstream social attitudes and values, turned up articles on stereotypes, stigmas, sexuality, sexual abuse and sexual dysfunction. Stories about and by disabled people on “what it’s like” to date, have sex or be in a relationship abounded. I rolled my eyes so hard at them because it’s so basic, ableist, and vanilla, if you know what I mean.\u003c/p>\n\u003cp>Disabled people are so innovative and creative in the ways they express intimacy because we live in an ableist world with such narrow, conventional ideas of intimacy. To me, intimacy is more than sex or romantic love. Intimacy is about relationships within a person’s self, with others, with communities, with nature and beyond. Intimacy is an ever-expanding universe composed of a myriad of heavenly bodies. It’s my hope that readers of my anthology will question their own ideas of intimacy and their relationships with it.\u003c/p>\n\u003cp>\u003cstrong>What’s your relationship with your voice today?\u003c/strong>\u003c/p>\n\u003cp>So there’s the physical voice, speech and sounds we make with our body, and voice in the broader sense, about your perspective on the world. I detest advocates who say they are “a voice for the voiceless” because everyone has a voice; it just might be in a different medium, and it’s our responsibility, if we actually care about diversity, to make an effort to listen and meet people where they are. And this is especially true for radio. I continue a voice through my writing as a columnist for \u003cem>Teen Vogue\u003c/em> and other projects, but my physical voice no longer exists since I now have a tracheostomy in my throat that is connected to a ventilator that I am dependent on 24/7.\u003c/p>\n\u003cp>I miss my physical voice. I was a really funny, witty speaking person. I wish you could have known me a few years ago, Mina, but I can’t go back; I can only go forward in this disabled cyborg body that is still alive and kicking butt. The way I express myself will never be the same. …\u003c/p>\n\u003cp>I would characterize my relationship to voice as fraught. I’m thankful to live in an era where I have an array of assistive technologies I can choose from — and at the same time, I struggle being heard, seen, and respected in my new non-speaking corporeal form. In one-on-one conversations, there is so much I want to say, and most of my friends are patient with me when I type a response, but there are times it takes minutes. I worry about them losing interest while they wait for me as I frantically type. My conversations have fundamentally changed. I find myself saying less, skipping certain parts of what I want to say, and becoming more succinct. …\u003c/p>\n\u003cp>I have lots of hot wisdom to drop, and I am determined to express myself fully without pressure. I still have a voice; I still have my words, but I have to undo the feeling of resentment of my present state at the way I present myself to the world that is shaped by forces beyond my control.\u003c/p>\n\u003cp>\u003cstrong>On her book’s dedication to herself.\u003c/strong>\u003c/p>\n\u003cp>I have a gigantic ego and am full of confidence about a lot of things, but I am also a puddle of insecurities, loneliness and self-doubt. Growing up disabled, I was made to feel a lot of shame and marginalized to the point where I questioned whether I belonged in many spaces. I think a lot of people feel that way whether they are disabled or not. It’s easier for me to love others than myself, so I just wanted to declare how much I love me and how I want all of my dreams to come true. Because let me tell you, Mina, I have plans to conquer the world. Insert evil laugh, ha ha ha.\u003c/p>\n\u003cp>\u003cstrong>On her ‘intimate partnership’ with death.\u003c/strong>\u003c/p>\n\u003cp>I turned 50 recently, and it was a real head trip. For \u003cem>Time\u003c/em> magazine, I \u003ca href=\"https://time.com/6960765/alice-wong-muscular-dystrophy-essay/\">wrote a piece \u003c/a>reflecting on all I have gone through and what my uncertain future holds. Doctors told my parents I wouldn’t live past 18, so I grew up without any dreams or images of a grown-up Alice. I could not see a future for myself, so I had to make one on my own. I had to will a pathway into existence.\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"label":"Related Coverage ","tag":"disability-community"},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>In my memoir, \u003cem>Year of the Tiger\u003c/em>, I wrote an essay about my first-grade teacher, Mrs. Shrock. In a note to me several years ago, she remembered one day in class, I asked her if I was going to die. And she said no, not now. I had no memory of that, but as I am typing this answer, I am tearing up thinking about it. Such heavy existential questions and fears preoccupied little 6-year-old Alice’s head. Death has always been a shadowy presence as someone with a progressive neuromuscular disability.\u003c/p>\n\u003cp>I have gone through lots of scary medical moments in my life, most recently this past January when I went to the ER. I was shocked to see so many health care providers without a mask or only wearing a blue surgical one that does not protect from airborne pathogens as effectively as an N95 mask. … It’s exhausting to be sick or disabled and drives me wild that many health care settings do not have mask mandates even though immunocompromised and high-risk patients have to go in for treatment. We’re still in a pandemic, even though our elected leaders would like us to forget that. No one should risk their lives when seeking health care.\u003c/p>\n\u003cp>The ER visit resulted in a one-day stay in the ICU, where I did not receive adequate pain relief during a procedure, and my communication device was not allowed in the room. I was powerless, crying nonstop, and unable to tell the nurses and technicians what was wrong. It was terrifying, and moments like these, where I am vulnerable and treated less than human, I wonder if I will die.\u003c/p>\n\u003cp>Not to be a downer for your listeners, but I think about death a lot, and it’s a constant in my life, a dance partner that takes me on a few too many dips and twirls for my liking. Death is an intimate partner of mine, and it makes me appreciate life. I make the most out of every day, celebrating, loving, and caring for my friends, family, and two cats, Bert and Ernie. Even though I am in a race against time, I am having as much fun as I can every single day, such as this conversation with you.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11984990/alice-wongs-disability-intimacy-anthology-is-a-deep-dive-into-relationships-and-community","authors":["11603"],"categories":["news_457","news_8"],"tags":["news_28001","news_29228","news_5946"],"featImg":"news_11934554","label":"news"},"news_11934545":{"type":"posts","id":"news_11934545","meta":{"index":"posts_1716263798","site":"news","id":"11934545","score":null,"sort":[1670619601000]},"parent":0,"labelTerm":{"site":"news","term":26731},"blocks":[],"publishDate":1670619601,"format":"standard","title":"'My Life Is in My Caregivers' Hands': Disability Advocate Alice Wong's Vision for a New Approach to Health Care","headTitle":"The California Report Magazine | KQED News","content":"\u003cul>\n\u003cli>\u003ca href=\"https://docs.google.com/document/d/1frhLE1GPfg7Cuif4MUDY3hKWhCuwKpN-eDTfGWvGj4s/edit\">\u003cstrong>Read the transcript of this radio story in a Google Doc.\u003c/strong>\u003c/a>\u003c/li>\n\u003c/ul>\n\u003cp>I was born with a progressive neuromuscular disability and my life has always been centered on care. Both receiving and giving it.\u003c/p>\n\u003cp>When I could no longer walk and started using a power chair, needed assistance breathing, and experienced difficulty swallowing and eating, I learned how to direct and manage my caregivers like a boss. I’ve done it ever since I was a child. This year, however, presented the greatest challenge in my abilities because the stakes were higher and dire.[pullquote align=\"right\" size=\"medium\" citation=\"Alice Wong, disability advocate\"]'What I learned this year and what I've known in my bones during my entire 48 years on this planet is that nothing is certain, and that we must build a world that acknowledges our interdependence with one another so no one ever falls through the cracks.'[/pullquote]\u003c/p>\n\u003cp>In the immortal words of Ferris Bueller, life moves pretty fast — and that would be an understatement for me in 2022. Early this year I was finishing the final edits to my memoir, \u003cem>\u003ca href=\"https://disabilityvisibilityproject.com/book/tiger/\">Year of the Tiger: An Activist’s Life\u003c/a>\u003c/em>, and preparing for book promotion. In the spring, my family and I spent a few glorious days in Calistoga. I had so much to look forward to.\u003c/p>\n\u003cp>Everything came to a screeching halt in June, when I suffered several medical crises, including a collapsed lung and an inability to swallow, which resulted in \u003ca href=\"https://disabilityvisibilityproject.com/2022/08/07/my-icu-summer-a-photo-essay/\">four weeks in the intensive care unit\u003c/a>. I now have a tracheostomy that’s connected to a ventilator, and a G-J (gastrojejunal) tube that delivers liquid nutrition to my small intestine and stomach. I also lost my ability to speak and started using a text-to-speech app to communicate.\u003c/p>\n\u003cp>My entire world was turned upside down. One of the biggest stressors upon leaving the hospital was how I would get my intensive medical needs covered at home. The discharge planner said that a person like me with my disability and new care needs who is on Medi-Cal, California’s Medicaid program, should consider going to a subacute nursing facility unless they had family support 24/7. It was the only time I cried in the hospital.\u003c/p>\n\u003ch2>Care infrastructure and policy in California\u003c/h2>\n\u003cp>I already receive almost 24 hours of care per day through two programs, but it was impossible finding workers due to low wages, worker shortages and the fluidic nature of the workforce. I needed people I could train who were relatively reliable, so I resorted to hiring a team of private-pay caregivers to augment the help I receive from my family.\u003c/p>\n\u003cp>By the way, \u003ca href=\"https://www.cdss.ca.gov/inforesources/ihss/county-ihss-wage-rates\">the wage rate for home care workers\u003c/a> in the programs I am on is a paltry $18.75 per hour in San Francisco. And there are much lower rates in other counties. A generous friend launched a \u003ca href=\"https://www.gofundme.com/f/alice-wong-stay-in-community\">GoFundMe campaign\u003c/a> to finance the indefinite costs of my private pay care, which is approximately $600 per day. This is something no disabled person should have to do to live in the community. Knowing how close I was to being institutionalized still haunts me and brings a searing clarity on how our society is focused on capitalism, productivity and independence, all of which is a scam.\u003c/p>\n\u003cfigure id=\"attachment_11934549\" class=\"wp-caption alignright\" style=\"max-width: 320px\">\u003cimg class=\"wp-image-11934549 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2022/12/Alice-Wong-in-ICU.jpg\" alt=\"Asian American disabled woman in a hospital bed wearing a hospital gown with tubes attached to her shoulders and face. Multiple pillows are underneath her arms and head. Her hands are clasped together in the middle of her body. She has a serious look on her face.\" width=\"320\" height=\"200\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2022/12/Alice-Wong-in-ICU.jpg 320w, https://ww2.kqed.org/app/uploads/sites/10/2022/12/Alice-Wong-in-ICU-160x100.jpg 160w\" sizes=\"(max-width: 320px) 100vw, 320px\">\u003cfigcaption class=\"wp-caption-text\">Alice Wong in the ICU with tubes attached to her arms and face. \u003ccite>(Courtesy of Alice Wong)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>My life is in my caregivers’ hands, and this is a cost I must pay because I want to live. Having five caregivers, training and communicating with them, and dealing with unexpected ups and downs when they are late or sick, or forget to show up, has taken a lot out of me as I try to recover and heal. Needing total help with my daily activities has cost me greatly: the necessary close contact with your body, the lack of privacy and spontaneity, the presumptions strangers have about your competence.\u003c/p>\n\u003cp>What I learned this year and what I’ve known in my bones during my entire 48 years on this planet is that nothing is certain, and that we must build a world that acknowledges our interdependence with one another so no one ever falls through the cracks.\u003c/p>\n\u003cp>My caregivers care for me but do they care about me? I believe they do, but this is probably an unrealistic expectation because at the end of the day, it is a job, and I am committed to being as professional, respectful and responsible as possible. And yet, care work is different. People are in your personal space and there is a mutual vulnerability shaped by structural and institutional inequality. So where do we go from here in California and beyond?\u003c/p>\n\u003cp>According to the AARP Public Policy Institute, \u003ca href=\"http://www.advancingstates.org/sites/nasuad/files/LTSS%20Fact%20Sheet%202019.pdf\">14 million adults in the United States need help with personal care or other daily activities (PDF)\u003c/a>. A UCLA analysis of California survey data on older adults and disabled people found that \u003ca href=\"https://healthpolicy.ucla.edu/publications/Documents/PDF/2022/Unmet-Needs-for-Help-at-Home-factsheet-aug2022.pdf\">39.6% of people who reported needing personal care assistance either don’t have help or could use more of it (PDF)\u003c/a>. I asked my friend \u003ca href=\"https://dredf.org/about-us/people/mary-lou-breslin/\">Mary Lou Breslin\u003c/a> — senior policy advisor at the Disability Rights Education and Defense Fund, and a disabled person who has multiple home care workers — for three policy changes for California. Here's what she recommends.\u003c/p>\n\u003cul>\n\u003cli>The state lifted asset limits for Medicaid eligibility, yet income limits still exist, disqualifying some people from getting home care, especially those age 65 or older. Loosening or eliminating income limits and creating a meaningful buy-in program for disabled people of any age would dramatically help those who don't currently qualify for home care services.\u003c/li>\n\u003cli>California should enact legislation based on the principle of Universal Family Care, a social insurance program model for home care and other long-term services and support as envisioned by the National Academy of Social Insurance and funded through a payroll tax, an income tax or some other dedicated revenue source.\u003c/li>\n\u003cli>The home care workforce should have across-the-board wage increases and benefits, such as paid sick, vacation and family leave. There should also be career ladders and training options and a loosening of immigration restrictions. The social insurance program mentioned above could bolster and stabilize wages for the home care workforce and spur improvements in training and job opportunities.\u003c/li>\n\u003c/ul>\n\u003cp>Adding to Mary Lou’s recommendations, I wrote about the future of care infrastructure in my memoir. They are not unfeasible dreams. Change comes from wild imaginations of what is possible. Here is a short excerpt:\u003c/p>\n\u003cblockquote>\u003cp>In the future, care infrastructure will be ...\u003c/p>\n\u003cul>\n\u003cli>one that treats care as a normal part of the human lifespan and not a failure or weakness to need help\u003c/li>\n\u003cli>one led and designed by disabled people and others who need or provide care\u003c/li>\n\u003cli>one that is free, publicly funded, and not means tested or linked to employment\u003c/li>\n\u003cli>one that puts a primacy on self-direction of the individual, bodily autonomy and dignity of risk rather than a formulaic, medicalized training that pathologizes disabled, older and chronically ill people\u003c/li>\n\u003c/ul>\n\u003c/blockquote>\n\u003cp>Because of — not despite — the hardships I experienced this year, my life is filled with joy, beauty and gratitude. The cost of care is steep, but it doesn’t have to be a burden if people truly believe their security and wellness is tied to their communities, neighbors, friends and family. While I still feel incredibly fragile and scared about what next year holds, I know we can transform the world if we have the political and collective will to do so.\u003c/p>\n\u003cp>\u003cem>For a shorter, audio version of this piece, go to \u003ca href=\"https://www.kqed.org/californiareport\">The California Report\u003c/a>.\u003c/em>\u003c/p>\n\u003cp>\u003cem>\u003ca href=\"https://disabilityvisibilityproject.com/\">Alice Wong\u003c/a> is a disabled activist and writer, and lives in San Francisco's Mission District. Twitter: \u003ca href=\"https://twitter.com/SFdirewolf\">@SFdirewolf\u003c/a>\u003c/em>\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n","stats":{"hasVideo":false,"hasChartOrMap":false,"hasAudio":false,"hasPolis":false,"wordCount":1308,"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"iframeSrcs":[],"paragraphCount":18},"modified":1670626207,"excerpt":"Alice Wong shares her story of a life affected by sudden medical crises and her road to recovery in a health care system that she believes can — and must — be changed for the better.","headData":{"twImgId":"","twTitle":"","ogTitle":"","ogImgId":"","twDescription":"","description":"Alice Wong shares her story of a life affected by sudden medical crises and her road to recovery in a health care system that she believes can — and must — be changed for the better.","title":"'My Life Is in My Caregivers' Hands': Disability Advocate Alice Wong's Vision for a New Approach to Health Care | KQED","ogDescription":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"'My Life Is in My Caregivers' Hands': Disability Advocate Alice Wong's Vision for a New Approach to Health Care","datePublished":"2022-12-09T13:00:01-08:00","dateModified":"2022-12-09T14:50:07-08:00","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"True","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"guestAuthors":[],"slug":"my-life-is-in-my-caregivers-hands-disability-advocate-alice-wongs-vision-for-a-new-approach-to-health-care","status":"publish","audioUrl":"https://traffic.omny.fm/d/clips/0af137ef-751e-4b19-a055-aaef00d2d578/ffca7e9f-6831-4[…]f-aaef00f5a073/cfa8af1a-f17a-45d3-b725-af66011733d2/audio.mp3","nprByline":"\u003ca href=\"https://twitter.com/SFdirewolf\">Alice Wong\u003c/a>","excludeFromSiteSearch":"Include","showOnAuthorArchivePages":"No","path":"/news/11934545/my-life-is-in-my-caregivers-hands-disability-advocate-alice-wongs-vision-for-a-new-approach-to-health-care","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cul>\n\u003cli>\u003ca href=\"https://docs.google.com/document/d/1frhLE1GPfg7Cuif4MUDY3hKWhCuwKpN-eDTfGWvGj4s/edit\">\u003cstrong>Read the transcript of this radio story in a Google Doc.\u003c/strong>\u003c/a>\u003c/li>\n\u003c/ul>\n\u003cp>I was born with a progressive neuromuscular disability and my life has always been centered on care. Both receiving and giving it.\u003c/p>\n\u003cp>When I could no longer walk and started using a power chair, needed assistance breathing, and experienced difficulty swallowing and eating, I learned how to direct and manage my caregivers like a boss. I’ve done it ever since I was a child. This year, however, presented the greatest challenge in my abilities because the stakes were higher and dire.\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"'What I learned this year and what I've known in my bones during my entire 48 years on this planet is that nothing is certain, and that we must build a world that acknowledges our interdependence with one another so no one ever falls through the cracks.'","name":"pullquote","attributes":{"named":{"align":"right","size":"medium","citation":"Alice Wong, disability advocate","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>In the immortal words of Ferris Bueller, life moves pretty fast — and that would be an understatement for me in 2022. Early this year I was finishing the final edits to my memoir, \u003cem>\u003ca href=\"https://disabilityvisibilityproject.com/book/tiger/\">Year of the Tiger: An Activist’s Life\u003c/a>\u003c/em>, and preparing for book promotion. In the spring, my family and I spent a few glorious days in Calistoga. I had so much to look forward to.\u003c/p>\n\u003cp>Everything came to a screeching halt in June, when I suffered several medical crises, including a collapsed lung and an inability to swallow, which resulted in \u003ca href=\"https://disabilityvisibilityproject.com/2022/08/07/my-icu-summer-a-photo-essay/\">four weeks in the intensive care unit\u003c/a>. I now have a tracheostomy that’s connected to a ventilator, and a G-J (gastrojejunal) tube that delivers liquid nutrition to my small intestine and stomach. I also lost my ability to speak and started using a text-to-speech app to communicate.\u003c/p>\n\u003cp>My entire world was turned upside down. One of the biggest stressors upon leaving the hospital was how I would get my intensive medical needs covered at home. The discharge planner said that a person like me with my disability and new care needs who is on Medi-Cal, California’s Medicaid program, should consider going to a subacute nursing facility unless they had family support 24/7. It was the only time I cried in the hospital.\u003c/p>\n\u003ch2>Care infrastructure and policy in California\u003c/h2>\n\u003cp>I already receive almost 24 hours of care per day through two programs, but it was impossible finding workers due to low wages, worker shortages and the fluidic nature of the workforce. I needed people I could train who were relatively reliable, so I resorted to hiring a team of private-pay caregivers to augment the help I receive from my family.\u003c/p>\n\u003cp>By the way, \u003ca href=\"https://www.cdss.ca.gov/inforesources/ihss/county-ihss-wage-rates\">the wage rate for home care workers\u003c/a> in the programs I am on is a paltry $18.75 per hour in San Francisco. And there are much lower rates in other counties. A generous friend launched a \u003ca href=\"https://www.gofundme.com/f/alice-wong-stay-in-community\">GoFundMe campaign\u003c/a> to finance the indefinite costs of my private pay care, which is approximately $600 per day. This is something no disabled person should have to do to live in the community. Knowing how close I was to being institutionalized still haunts me and brings a searing clarity on how our society is focused on capitalism, productivity and independence, all of which is a scam.\u003c/p>\n\u003cfigure id=\"attachment_11934549\" class=\"wp-caption alignright\" style=\"max-width: 320px\">\u003cimg class=\"wp-image-11934549 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2022/12/Alice-Wong-in-ICU.jpg\" alt=\"Asian American disabled woman in a hospital bed wearing a hospital gown with tubes attached to her shoulders and face. Multiple pillows are underneath her arms and head. Her hands are clasped together in the middle of her body. She has a serious look on her face.\" width=\"320\" height=\"200\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2022/12/Alice-Wong-in-ICU.jpg 320w, https://ww2.kqed.org/app/uploads/sites/10/2022/12/Alice-Wong-in-ICU-160x100.jpg 160w\" sizes=\"(max-width: 320px) 100vw, 320px\">\u003cfigcaption class=\"wp-caption-text\">Alice Wong in the ICU with tubes attached to her arms and face. \u003ccite>(Courtesy of Alice Wong)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>My life is in my caregivers’ hands, and this is a cost I must pay because I want to live. Having five caregivers, training and communicating with them, and dealing with unexpected ups and downs when they are late or sick, or forget to show up, has taken a lot out of me as I try to recover and heal. Needing total help with my daily activities has cost me greatly: the necessary close contact with your body, the lack of privacy and spontaneity, the presumptions strangers have about your competence.\u003c/p>\n\u003cp>What I learned this year and what I’ve known in my bones during my entire 48 years on this planet is that nothing is certain, and that we must build a world that acknowledges our interdependence with one another so no one ever falls through the cracks.\u003c/p>\n\u003cp>My caregivers care for me but do they care about me? I believe they do, but this is probably an unrealistic expectation because at the end of the day, it is a job, and I am committed to being as professional, respectful and responsible as possible. And yet, care work is different. People are in your personal space and there is a mutual vulnerability shaped by structural and institutional inequality. So where do we go from here in California and beyond?\u003c/p>\n\u003cp>According to the AARP Public Policy Institute, \u003ca href=\"http://www.advancingstates.org/sites/nasuad/files/LTSS%20Fact%20Sheet%202019.pdf\">14 million adults in the United States need help with personal care or other daily activities (PDF)\u003c/a>. A UCLA analysis of California survey data on older adults and disabled people found that \u003ca href=\"https://healthpolicy.ucla.edu/publications/Documents/PDF/2022/Unmet-Needs-for-Help-at-Home-factsheet-aug2022.pdf\">39.6% of people who reported needing personal care assistance either don’t have help or could use more of it (PDF)\u003c/a>. I asked my friend \u003ca href=\"https://dredf.org/about-us/people/mary-lou-breslin/\">Mary Lou Breslin\u003c/a> — senior policy advisor at the Disability Rights Education and Defense Fund, and a disabled person who has multiple home care workers — for three policy changes for California. Here's what she recommends.\u003c/p>\n\u003cul>\n\u003cli>The state lifted asset limits for Medicaid eligibility, yet income limits still exist, disqualifying some people from getting home care, especially those age 65 or older. Loosening or eliminating income limits and creating a meaningful buy-in program for disabled people of any age would dramatically help those who don't currently qualify for home care services.\u003c/li>\n\u003cli>California should enact legislation based on the principle of Universal Family Care, a social insurance program model for home care and other long-term services and support as envisioned by the National Academy of Social Insurance and funded through a payroll tax, an income tax or some other dedicated revenue source.\u003c/li>\n\u003cli>The home care workforce should have across-the-board wage increases and benefits, such as paid sick, vacation and family leave. There should also be career ladders and training options and a loosening of immigration restrictions. The social insurance program mentioned above could bolster and stabilize wages for the home care workforce and spur improvements in training and job opportunities.\u003c/li>\n\u003c/ul>\n\u003cp>Adding to Mary Lou’s recommendations, I wrote about the future of care infrastructure in my memoir. They are not unfeasible dreams. Change comes from wild imaginations of what is possible. Here is a short excerpt:\u003c/p>\n\u003cblockquote>\u003cp>In the future, care infrastructure will be ...\u003c/p>\n\u003cul>\n\u003cli>one that treats care as a normal part of the human lifespan and not a failure or weakness to need help\u003c/li>\n\u003cli>one led and designed by disabled people and others who need or provide care\u003c/li>\n\u003cli>one that is free, publicly funded, and not means tested or linked to employment\u003c/li>\n\u003cli>one that puts a primacy on self-direction of the individual, bodily autonomy and dignity of risk rather than a formulaic, medicalized training that pathologizes disabled, older and chronically ill people\u003c/li>\n\u003c/ul>\n\u003c/blockquote>\n\u003cp>Because of — not despite — the hardships I experienced this year, my life is filled with joy, beauty and gratitude. The cost of care is steep, but it doesn’t have to be a burden if people truly believe their security and wellness is tied to their communities, neighbors, friends and family. While I still feel incredibly fragile and scared about what next year holds, I know we can transform the world if we have the political and collective will to do so.\u003c/p>\n\u003cp>\u003cem>For a shorter, audio version of this piece, go to \u003ca href=\"https://www.kqed.org/californiareport\">The California Report\u003c/a>.\u003c/em>\u003c/p>\n\u003cp>\u003cem>\u003ca href=\"https://disabilityvisibilityproject.com/\">Alice Wong\u003c/a> is a disabled activist and writer, and lives in San Francisco's Mission District. Twitter: \u003ca href=\"https://twitter.com/SFdirewolf\">@SFdirewolf\u003c/a>\u003c/em>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11934545/my-life-is-in-my-caregivers-hands-disability-advocate-alice-wongs-vision-for-a-new-approach-to-health-care","authors":["byline_news_11934545"],"programs":["news_26731"],"categories":["news_457","news_8"],"tags":["news_28001","news_17286","news_30162"],"featImg":"news_11934554","label":"news_26731"},"news_11902253":{"type":"posts","id":"news_11902253","meta":{"index":"posts_1716263798","site":"news","id":"11902253","score":null,"sort":[1643032803000]},"parent":0,"labelTerm":{"site":"news"},"blocks":[],"publishDate":1643032803,"format":"standard","disqusTitle":"'Risk No Matter Where I Go': For Many Disabled People, a Future of Ever-Present COVID Is Daunting","title":"'Risk No Matter Where I Go': For Many Disabled People, a Future of Ever-Present COVID Is Daunting","headTitle":"KQED News","content":"\u003cp>Even before the COVID pandemic hit, Danny and Nikki Miller devoted all the time and energy they could to caring for their two sons, both of whom have a rare genetic disorder called \u003ca href=\"https://www.mepan.org/\">MEPAN syndrome\u003c/a>.\u003c/p>\n\u003cp>Ten-year-old Chase and 11-year-old Carson have alert minds and radiant smiles, but very uncooperative bodies. They can’t sit, stand, talk or walk. The Marin family’s morning routine includes wheelchairs, electric lifts, diaper changes and spoon feeding.[pullquote align=\"right\" size=\"medium\" citation=\"Sassy Outwater-Wright, a Berkeley resident who is immunocompromised\"]'There’s an element of risk no matter where I go. I can't step out into public and not assume that there's somebody unvaccinated nearby.'[/pullquote]The family used to rely heavily on several types of therapists and individual aids — and the boys’ skills were slowly improving. But when COVID hit, all that support went online or stopped entirely. Danny and Nikki struggled to balance their own careers with homeschooling their boys.\u003c/p>\n\u003cp>“We were taxed,” says Danny Miller. “I tried to teach the boys physical therapy while it was being demonstrated over Zoom. We had a lot more responsibility, a lot more on our shoulders. You know, as if we didn't have enough already.”\u003c/p>\n\u003cp>Every new surge of the virus sends the family into chaos, escalating Danny and Nikki’s fears that their boys might contract it. Doctors have warned that their incredibly rare neurological disease (there are fewer than 30 known cases worldwide) puts them at higher risk — and their parents now dread a future riddled with supervariants.\u003c/p>\n\u003cfigure id=\"attachment_11902367\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-008-scaled-e1642807438637.jpg\">\u003cimg class=\"wp-image-11902367 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-008-scaled-e1642807438637.jpg\" alt=\"A family of four, with two boys in wheelchairs and a mother and father in the middle.\" width=\"1920\" height=\"1280\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">The Miller family in November 2021. From left: Carson, 11, Danny, Nikki and Chase, 10. \u003ccite>(Courtesy Danny Miller)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“We don't want anything else to potentially compromise their already fragile situation,” Danny says.\u003c/p>\n\u003cp>Even after the omicron surge ends, COVID-19 will still be with us, and learning to live with it will be a challenge for everyone.\u003c/p>\n\u003cp>But that challenge will be especially difficult for the roughly \u003ca href=\"https://jamanetwork.com/journals/jama/fullarticle/2572798\">7 million immunocompromised Americans\u003c/a> who remain especially vulnerable and will have to keep their guard up much higher than the rest of us.\u003c/p>\n\u003cp>Among them is Sassy Outwater-Wright. Her 39-year-old body is also very fragile. Right when COVID hit in the spring of 2020, the Berkeley resident started feeling an agonizing pain in her head and face. Doctors discovered a very aggressive soft-tissue cancer creeping toward her brain. Radiation and chemotherapy treatment wiped out her white blood cells, and therefore her immune system.\u003c/p>\n\u003cp>Leaving the house, let alone taking an Uber to and from the hospital for screenings and checkups, was and still \u003cem>is\u003c/em> terrifying for her. Public transportation is still out of the question.\u003c/p>\n\u003cfigure id=\"attachment_11902363\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53245_015_Berkeley_SassyOutwaterWright_01202022-qut.jpg\">\u003cimg class=\"size-full wp-image-11902363\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53245_015_Berkeley_SassyOutwaterWright_01202022-qut.jpg\" alt=\"A woman with tattoos and dark glasses sits at a table in a garden.\" width=\"1920\" height=\"1280\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53245_015_Berkeley_SassyOutwaterWright_01202022-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53245_015_Berkeley_SassyOutwaterWright_01202022-qut-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53245_015_Berkeley_SassyOutwaterWright_01202022-qut-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53245_015_Berkeley_SassyOutwaterWright_01202022-qut-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53245_015_Berkeley_SassyOutwaterWright_01202022-qut-1536x1024.jpg 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Sassy Outwater-Wright sits at a picnic table in her backyard in Berkeley on Jan. 20, 2022. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Outwater-Wright has fought cancer her entire life. When she was a baby, a rare cancer attacked her eyes, leaving her blind.\u003c/p>\n\u003cp>“My superhero name is Tumor Killer Girl,” she says. “I just went through my 100th surgery in November.”\u003c/p>\n\u003cp>If Outwater-Wright gets a sniffle, taking a rapid COVID test isn’t an option because she can’t see the results. As a disability advocate, she’s trying to fight for better access to home tests and ensure that vaccine messaging is accessible to people with disabilities. But that’s hard to do over Zoom.\u003c/p>\n\u003cp>“I do not have that face-to-face gravitas of me walking into a room anymore,” she says.\u003c/p>\n\u003cp>Outwater-Wright would also like to sit in a cafe, take a vacation and ditch her N95 mask, which presses into the sensitive scar on her face where her tumor was. But she can’t do any of those things — and that’s unlikely to change for the foreseeable future.\u003c/p>\n\u003cfigure id=\"attachment_11902364\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53249_019_Berkeley_SassyOutwaterWright_01202022-qut.jpg\">\u003cimg class=\"size-full wp-image-11902364\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53249_019_Berkeley_SassyOutwaterWright_01202022-qut.jpg\" alt=\"A woman stretches, touching the floor with her hands.\" width=\"1920\" height=\"1280\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53249_019_Berkeley_SassyOutwaterWright_01202022-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53249_019_Berkeley_SassyOutwaterWright_01202022-qut-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53249_019_Berkeley_SassyOutwaterWright_01202022-qut-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53249_019_Berkeley_SassyOutwaterWright_01202022-qut-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53249_019_Berkeley_SassyOutwaterWright_01202022-qut-1536x1024.jpg 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Sassy Outwater-Wright participates from home in a remote session with her physical therapist on Jan. 20, 2022. She had to cancel in-person visits to the gym due to the latest COVID-19 surge. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“There’s an element of risk no matter where I go,” she says. “I can't step out into public and not assume that there's somebody unvaccinated nearby.”\u003c/p>\n\u003cp>Alice Wong, a prominent disability rights activist and author, also weighs life or death every time she goes outside. The San Francisco resident has a neuromuscular disability and uses a ventilator to breathe.[aside label=\"RELATED COVERAGE\" tag=\"disability-rights\"]“There is a casual acceptance that the pandemic will turn into something endemic, an inevitability that ‘everyone’ will get COVID eventually,” writes Wong in an email. “Leaders, medical professionals and public health experts have said something along those lines with zero acknowledgement that people will still die and those deaths will be disproportionately from high-risk groups.”\u003c/p>\n\u003cp>Wong is pushing for additional funds to pay for more delivery services to administer boosters, masks and test kits to people who can't leave their homes. She is also advocating for stricter vaccine mandates, extended paid sick leave and free personal protective equipment for home health care workers and employees of long-term care facilities.\u003c/p>\n\u003cp>Wong says it’s hard to see small glimmers of access — like online events, priority shopping hours, curbside pickup and even flexible work schedules — slowly receding. It’s exhausting, she says, defending one’s very existence at a time when being immunocompromised has never been more terrifying.\u003c/p>\n\u003cp>“Their vulnerability is very much dependent on community case rates,” says Bob Wachter, chair of the Department of Medicine at UCSF. “They're probably going to have to modify their behavior based on that level of threat.”\u003c/p>\n\u003cfigure id=\"attachment_11902369\" class=\"wp-caption aligncenter\" style=\"max-width: 2560px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-052-scaled.jpg\">\u003cimg class=\"size-full wp-image-11902369\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-052-scaled.jpg\" alt=\"Two boys in wheelchairs, smiling and touching hands.\" width=\"2560\" height=\"2169\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-052-scaled.jpg 2560w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-052-800x678.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-052-1020x864.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-052-160x136.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-052-1536x1301.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-052-2048x1735.jpg 2048w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-052-1920x1627.jpg 1920w\" sizes=\"(max-width: 2560px) 100vw, 2560px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Brothers Chase (left), 10, and Carson, 11, in November 2021. \u003ccite>(Courtesy of Danny Miller)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Danny Miller, the father of the two boys with MEPAN syndrome, is frustrated so many people are choosing not to get vaccinated. He says those decisions are threatening his sons' lives, and would like to see politicians and judges take stronger steps to ensure higher vaccine rates.\u003c/p>\n\u003cp>“You have parts of the country where two-thirds of the people are not vaccinated or boosted,” he says. “That means things are going to drag on much longer than they should because we are not all in this together.”[ad fullwidth]\u003c/p>\n\u003cp>\u003c/p>\n","disqusIdentifier":"11902253 https://ww2.kqed.org/news/?p=11902253","disqusUrl":"https://ww2.kqed.org/news/2022/01/24/risk-no-matter-where-i-go-for-many-disabled-people-a-future-of-ever-present-covid-is-daunting/","stats":{"hasVideo":false,"hasChartOrMap":false,"hasAudio":false,"hasPolis":false,"wordCount":1092,"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"iframeSrcs":[],"paragraphCount":22},"modified":1643058361,"excerpt":"COVID-19 is likely to remain a threat for the foreseeable future, a particularly frightening prospect for millions of disabled, immunocompromised people. ","headData":{"twImgId":"","twTitle":"","ogTitle":"","ogImgId":"","twDescription":"","description":"COVID-19 is likely to remain a threat for the foreseeable future, a particularly frightening prospect for millions of disabled, immunocompromised people. ","title":"'Risk No Matter Where I Go': For Many Disabled People, a Future of Ever-Present COVID Is Daunting | KQED","ogDescription":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"'Risk No Matter Where I Go': For Many Disabled People, a Future of Ever-Present COVID Is Daunting","datePublished":"2022-01-24T06:00:03-08:00","dateModified":"2022-01-24T13:06:01-08:00","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"True","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"guestAuthors":[],"slug":"risk-no-matter-where-i-go-for-many-disabled-people-a-future-of-ever-present-covid-is-daunting","status":"publish","audioUrl":"https://traffic.omny.fm/d/clips/0af137ef-751e-4b19-a055-aaef00d2d578/ffca7e9f-6831-4[…]f-aaef00f5a073/fc86fdbe-b168-44cc-b96d-ae2301365466/audio.mp3","excludeFromSiteSearch":"Include","path":"/news/11902253/risk-no-matter-where-i-go-for-many-disabled-people-a-future-of-ever-present-covid-is-daunting","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Even before the COVID pandemic hit, Danny and Nikki Miller devoted all the time and energy they could to caring for their two sons, both of whom have a rare genetic disorder called \u003ca href=\"https://www.mepan.org/\">MEPAN syndrome\u003c/a>.\u003c/p>\n\u003cp>Ten-year-old Chase and 11-year-old Carson have alert minds and radiant smiles, but very uncooperative bodies. They can’t sit, stand, talk or walk. The Marin family’s morning routine includes wheelchairs, electric lifts, diaper changes and spoon feeding.\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"'There’s an element of risk no matter where I go. I can't step out into public and not assume that there's somebody unvaccinated nearby.'","name":"pullquote","attributes":{"named":{"align":"right","size":"medium","citation":"Sassy Outwater-Wright, a Berkeley resident who is immunocompromised","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>The family used to rely heavily on several types of therapists and individual aids — and the boys’ skills were slowly improving. But when COVID hit, all that support went online or stopped entirely. Danny and Nikki struggled to balance their own careers with homeschooling their boys.\u003c/p>\n\u003cp>“We were taxed,” says Danny Miller. “I tried to teach the boys physical therapy while it was being demonstrated over Zoom. We had a lot more responsibility, a lot more on our shoulders. You know, as if we didn't have enough already.”\u003c/p>\n\u003cp>Every new surge of the virus sends the family into chaos, escalating Danny and Nikki’s fears that their boys might contract it. Doctors have warned that their incredibly rare neurological disease (there are fewer than 30 known cases worldwide) puts them at higher risk — and their parents now dread a future riddled with supervariants.\u003c/p>\n\u003cfigure id=\"attachment_11902367\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-008-scaled-e1642807438637.jpg\">\u003cimg class=\"wp-image-11902367 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-008-scaled-e1642807438637.jpg\" alt=\"A family of four, with two boys in wheelchairs and a mother and father in the middle.\" width=\"1920\" height=\"1280\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">The Miller family in November 2021. From left: Carson, 11, Danny, Nikki and Chase, 10. \u003ccite>(Courtesy Danny Miller)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“We don't want anything else to potentially compromise their already fragile situation,” Danny says.\u003c/p>\n\u003cp>Even after the omicron surge ends, COVID-19 will still be with us, and learning to live with it will be a challenge for everyone.\u003c/p>\n\u003cp>But that challenge will be especially difficult for the roughly \u003ca href=\"https://jamanetwork.com/journals/jama/fullarticle/2572798\">7 million immunocompromised Americans\u003c/a> who remain especially vulnerable and will have to keep their guard up much higher than the rest of us.\u003c/p>\n\u003cp>Among them is Sassy Outwater-Wright. Her 39-year-old body is also very fragile. Right when COVID hit in the spring of 2020, the Berkeley resident started feeling an agonizing pain in her head and face. Doctors discovered a very aggressive soft-tissue cancer creeping toward her brain. Radiation and chemotherapy treatment wiped out her white blood cells, and therefore her immune system.\u003c/p>\n\u003cp>Leaving the house, let alone taking an Uber to and from the hospital for screenings and checkups, was and still \u003cem>is\u003c/em> terrifying for her. Public transportation is still out of the question.\u003c/p>\n\u003cfigure id=\"attachment_11902363\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53245_015_Berkeley_SassyOutwaterWright_01202022-qut.jpg\">\u003cimg class=\"size-full wp-image-11902363\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53245_015_Berkeley_SassyOutwaterWright_01202022-qut.jpg\" alt=\"A woman with tattoos and dark glasses sits at a table in a garden.\" width=\"1920\" height=\"1280\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53245_015_Berkeley_SassyOutwaterWright_01202022-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53245_015_Berkeley_SassyOutwaterWright_01202022-qut-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53245_015_Berkeley_SassyOutwaterWright_01202022-qut-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53245_015_Berkeley_SassyOutwaterWright_01202022-qut-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53245_015_Berkeley_SassyOutwaterWright_01202022-qut-1536x1024.jpg 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Sassy Outwater-Wright sits at a picnic table in her backyard in Berkeley on Jan. 20, 2022. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Outwater-Wright has fought cancer her entire life. When she was a baby, a rare cancer attacked her eyes, leaving her blind.\u003c/p>\n\u003cp>“My superhero name is Tumor Killer Girl,” she says. “I just went through my 100th surgery in November.”\u003c/p>\n\u003cp>If Outwater-Wright gets a sniffle, taking a rapid COVID test isn’t an option because she can’t see the results. As a disability advocate, she’s trying to fight for better access to home tests and ensure that vaccine messaging is accessible to people with disabilities. But that’s hard to do over Zoom.\u003c/p>\n\u003cp>“I do not have that face-to-face gravitas of me walking into a room anymore,” she says.\u003c/p>\n\u003cp>Outwater-Wright would also like to sit in a cafe, take a vacation and ditch her N95 mask, which presses into the sensitive scar on her face where her tumor was. But she can’t do any of those things — and that’s unlikely to change for the foreseeable future.\u003c/p>\n\u003cfigure id=\"attachment_11902364\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53249_019_Berkeley_SassyOutwaterWright_01202022-qut.jpg\">\u003cimg class=\"size-full wp-image-11902364\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53249_019_Berkeley_SassyOutwaterWright_01202022-qut.jpg\" alt=\"A woman stretches, touching the floor with her hands.\" width=\"1920\" height=\"1280\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53249_019_Berkeley_SassyOutwaterWright_01202022-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53249_019_Berkeley_SassyOutwaterWright_01202022-qut-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53249_019_Berkeley_SassyOutwaterWright_01202022-qut-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53249_019_Berkeley_SassyOutwaterWright_01202022-qut-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/RS53249_019_Berkeley_SassyOutwaterWright_01202022-qut-1536x1024.jpg 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Sassy Outwater-Wright participates from home in a remote session with her physical therapist on Jan. 20, 2022. She had to cancel in-person visits to the gym due to the latest COVID-19 surge. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“There’s an element of risk no matter where I go,” she says. “I can't step out into public and not assume that there's somebody unvaccinated nearby.”\u003c/p>\n\u003cp>Alice Wong, a prominent disability rights activist and author, also weighs life or death every time she goes outside. The San Francisco resident has a neuromuscular disability and uses a ventilator to breathe.\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"label":"RELATED COVERAGE ","tag":"disability-rights"},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>“There is a casual acceptance that the pandemic will turn into something endemic, an inevitability that ‘everyone’ will get COVID eventually,” writes Wong in an email. “Leaders, medical professionals and public health experts have said something along those lines with zero acknowledgement that people will still die and those deaths will be disproportionately from high-risk groups.”\u003c/p>\n\u003cp>Wong is pushing for additional funds to pay for more delivery services to administer boosters, masks and test kits to people who can't leave their homes. She is also advocating for stricter vaccine mandates, extended paid sick leave and free personal protective equipment for home health care workers and employees of long-term care facilities.\u003c/p>\n\u003cp>Wong says it’s hard to see small glimmers of access — like online events, priority shopping hours, curbside pickup and even flexible work schedules — slowly receding. It’s exhausting, she says, defending one’s very existence at a time when being immunocompromised has never been more terrifying.\u003c/p>\n\u003cp>“Their vulnerability is very much dependent on community case rates,” says Bob Wachter, chair of the Department of Medicine at UCSF. “They're probably going to have to modify their behavior based on that level of threat.”\u003c/p>\n\u003cfigure id=\"attachment_11902369\" class=\"wp-caption aligncenter\" style=\"max-width: 2560px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-052-scaled.jpg\">\u003cimg class=\"size-full wp-image-11902369\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-052-scaled.jpg\" alt=\"Two boys in wheelchairs, smiling and touching hands.\" width=\"2560\" height=\"2169\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-052-scaled.jpg 2560w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-052-800x678.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-052-1020x864.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-052-160x136.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-052-1536x1301.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-052-2048x1735.jpg 2048w, https://ww2.kqed.org/app/uploads/sites/10/2022/01/Miller-Family-Oct2021-052-1920x1627.jpg 1920w\" sizes=\"(max-width: 2560px) 100vw, 2560px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Brothers Chase (left), 10, and Carson, 11, in November 2021. \u003ccite>(Courtesy of Danny Miller)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Danny Miller, the father of the two boys with MEPAN syndrome, is frustrated so many people are choosing not to get vaccinated. He says those decisions are threatening his sons' lives, and would like to see politicians and judges take stronger steps to ensure higher vaccine rates.\u003c/p>\n\u003cp>“You have parts of the country where two-thirds of the people are not vaccinated or boosted,” he says. “That means things are going to drag on much longer than they should because we are not all in this together.”\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003c/p>\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11902253/risk-no-matter-where-i-go-for-many-disabled-people-a-future-of-ever-present-covid-is-daunting","authors":["11229"],"categories":["news_457","news_8"],"tags":["news_28001","news_27350","news_27504","news_25262","news_27626","news_30305"],"featImg":"news_11902362","label":"news"},"news_11819539":{"type":"posts","id":"news_11819539","meta":{"index":"posts_1716263798","site":"news","id":"11819539","score":null,"sort":[1590238852000]},"guestAuthors":[],"slug":"it-just-burns-me-up-disability-activist-alice-wong-reminds-california-this-pandemic-is-far-from-over","title":"'It Just Burns Me Up': Disability Activist Alice Wong Reminds California This Pandemic Is Far From Over","publishDate":1590238852,"format":"audio","headTitle":"‘It Just Burns Me Up’: Disability Activist Alice Wong Reminds California This Pandemic Is Far From Over | KQED","labelTerm":{},"content":"\u003cp>Alice Wong is an influential disability rights activist, media maker and podcaster who hosts the podcast \u003ca href=\"https://disabilityvisibilityproject.com/podcast/\">Disability/Visibility \u003c/a>from her home in San Francisco.\u003c/p>\n\u003cp>Here are some highlights from her recent conversation with California Report Magazine host Sasha Khokha.\u003c/p>\n\u003cp>\u003cem>Comments have been edited for brevity and clarity. \u003c/em>\u003c/p>\n\u003cp>\u003cstrong>What’s most troubling about the COVID-19 pandemic:\u003c/strong>\u003c/p>\n\u003cp>Seeing so many people go outside and really, absolutely not social distancing, not wearing masks. It just burns me up, the way people are so ready to be over the pandemic. I don’t think we’re anywhere close to it. They’re going to actually create more infections and subsequently more deaths.\u003c/p>\n\u003cp>[pullquote size=\"medium\" align=\"right\" citation=\"Alice Wong, disability rights activist\"]“We’ve learned how to make do with living in a world that’s rather hostile and never designed for us in the first place. There’s a lot of lessons and insight that disabled folks have to share.”[/pullquote]\u003c/p>\n\u003cp>They’re still advising high-risk people like myself to just stay at home. I feel like this sets up this very unfair dynamic where the burden of staying safe and healthy falls upon those who are the most marginalized and the most impacted. It’s going to create additional complications, consequences that all of us are going to suffer.\u003c/p>\n\u003cp>\u003cstrong>On her recent \u003ca href=\"https://www.vox.com/first-person/2020/4/4/21204261/coronavirus-covid-19-disabled-people-disabilities-triage\">Vox essay\u003c/a>, “I’m Disabled and I need a ventilator to live. Am I expendable during this pandemic?”\u003c/strong>\u003c/p>\n\u003cp>It doesn’t surprise me that state guidelines or health systems would say, “We have only this many ventilators or this many staff or resources. You know, we really need to think about who are the most likely to benefit.” Any sort of calculus about who’s the most worthy often takes into account issues about quality of life. I do know that people see me with my wheelchair, with my ventilator on, and they just can’t imagine living this way. Some people just straight up feel like this kind of life is a life not worth living. These kinds of attitudes end up really excluding and discriminating against folks like me.\u003c/p>\n\u003cp>[aside tag=\"disability\" label=\"related coverage\"]\u003c/p>\n\u003cp>\u003cstrong>How the pandemic has highlighted the importance of accessibility:\u003c/strong>\u003c/p>\n\u003cp>I think it’s bittersweet. It’s wonderful that people are suddenly realizing, “Oh, you know, we should make this concert live streaming!” That working from home should be more flexible, or learning from home. Realizing and seeing how access really does benefit everyone.\u003c/p>\n\u003cp>But I also feel some concern, and also some irritation, because disabled people have been advocating for this kind of thing for 30 years after the passage of the Americans With Disabilities Act. There’s still this idea that requesting accommodations and advocating for them is somehow asking for something extra, some unfair advantage. These kinds of adaptations should absolutely remain and become a part of the default in the ways we organize and the ways we connect as people.\u003c/p>\n\u003cp>\u003cstrong>The importance of caregivers:\u003c/strong>\u003c/p>\n\u003cp>For a lot of us, like myself, it’s basically impossible to social distance and isolate ourselves. I can’t get out of bed without help. If I’m infected or if my [caregiver] is infected, there’s really no way to protect myself from exposure.\u003c/p>\n\u003cp>[pullquote size=\"medium\" align=\"right\" citation=\"Alice Wong, disability rights activist\"]“It’s so troubling to see people so ready to get the economy jump-started and just relaxing everything, while so many people are dying behind closed doors. I don’t understand why there isn’t more outrage over these deaths.”[/pullquote]\u003c/p>\n\u003cp>I want the people who help me to have all the protections, equipment and everything they need. This is a workforce that’s under the category of “essential workers,” but they truly aren’t valued in our society in terms of caregiving. This is a very gendered profession where so many of the workers are women of color or immigrants. I’d like to see an increase in wages and benefits for this workforce. Access to protective gear for anyone that does this kind of work, [including] family caregivers.\u003c/p>\n\u003cp>One thing that’s really distressing to me is the number of workers and people living at nursing homes and other long-term care facilities all over California and nationally that are dying and infected with COVID-19.\u003c/p>\n\u003cp>It’s so troubling to see people so ready to get the economy jump-started and just relaxing everything, while so many people are dying behind closed doors. I don’t understand why there isn’t more outrage over these deaths, because these systems, these institutions are broken. This a really important time to think about, to rethink, about why these systems exist and to really question them.\u003c/p>\n\u003cfigure id=\"attachment_11819587\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11819587\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-800x600.jpg\" alt=\"Disability rights activist Alice Wong podcasting at her desk at home.\" width=\"800\" height=\"600\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-800x600.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-160x120.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-1020x765.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43260_podcast-katt-qut.jpg 1920w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-1832x1374.jpg 1832w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-1376x1032.jpg 1376w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-1044x783.jpg 1044w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-632x474.jpg 632w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-536x402.jpg 536w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Disability rights activist Alice Wong podcasting at her desk at home. \u003ccite>(Eddie Hernandez Photography)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>What she’s hearing from her podcast listeners:\u003c/strong>\u003c/p>\n\u003cp>We really need more stories and perspectives by the people who are most impacted by this pandemic. I’m talking about multiply-marginalized people, like black, disabled, chronically ill folks. Because we can’t separate the racism and the ableism and classism from this experience. This wasn’t the first crisis that disabled folks faced. This is just one of a long kind of arc. We’ve learned how to make do with living in a world that’s rather hostile and never designed for us in the first place. There’s a lot of lessons and insight that disabled folks have to share.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003cstrong>What it would take to build an inclusive future:\u003c/strong>\u003c/p>\n\u003cp>I think the future could look so different. I think so much of what’s happened during the pandemic and the flaws in the structures and systems we have are basically a failure of imagination. What if we designed ways that people could be integrated into society with the supports and services in place so they have as much autonomy as possible? This kind of work is already happening. By communities of color, queer communities, disabled communities, in the way that we provide \u003ca href=\"https://www.kqed.org/news/11806414/coronavirus-how-these-disabled-activists-are-taking-matters-into-their-own-sanitized-hand\">mutual aid\u003c/a> and care for one another.\u003c/p>\n\u003cp>There’s such an opportunity to kind of take these lessons and scale it up so that we really can have people living the lives that they want. I feel like that’s absolutely possible. But it’s just it’s a matter of a culture shift and political will.\u003c/p>\n\u003cfigure id=\"attachment_11819597\" class=\"wp-caption aligncenter\" style=\"max-width: 389px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-11819597\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43259_Disability_Visibility6-qut.jpg\" alt=\"Alice Wong's book, Disability/Visibility: First Person Stories for the 21st Century, comes out in June 2020.\" width=\"389\" height=\"600\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43259_Disability_Visibility6-qut.jpg 778w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43259_Disability_Visibility6-qut-160x247.jpg 160w\" sizes=\"(max-width: 389px) 100vw, 389px\">\u003cfigcaption class=\"wp-caption-text\">Alice Wong’s book, “Disability/Visibility: First Person Stories for the 21st Century,” comes out in June 2020. \u003ccite>(Courtesy of Alice Wong)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Wong’s book “\u003ca href=\"https://disabilityvisibilityproject.com/book/\">Disability/Visibility: First Person Stories for the 21st Century\u003c/a>” comes out in June.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n","blocks":[],"excerpt":"Influential activist and podcaster Alice Wong talks about lessons learned from the coronavirus pandemic and her hopes for a more inclusive future.","status":"publish","parent":0,"modified":1726006949,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":27,"wordCount":1174},"headData":{"title":"'It Just Burns Me Up': Disability Activist Alice Wong Reminds California This Pandemic Is Far From Over | KQED","description":"Influential activist and podcaster Alice Wong talks about lessons learned from the coronavirus pandemic and her hopes for a more inclusive future.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"'It Just Burns Me Up': Disability Activist Alice Wong Reminds California This Pandemic Is Far From Over","datePublished":"2020-05-23T06:00:52-07:00","dateModified":"2024-09-10T15:22:29-07:00","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"True","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"source":"coronavirus","sourceUrl":"https://www.kqed.org/coronavirus","audioUrl":"https://traffic.omny.fm/d/clips/0af137ef-751e-4b19-a055-aaef00d2d578/ffca7e9f-6831-41c5-bcaf-aaef00f5a073/48ee046a-7628-403e-be71-abc4002c2b61/audio.mp3","sticky":false,"path":"/news/11819539/it-just-burns-me-up-disability-activist-alice-wong-reminds-california-this-pandemic-is-far-from-over","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Alice Wong is an influential disability rights activist, media maker and podcaster who hosts the podcast \u003ca href=\"https://disabilityvisibilityproject.com/podcast/\">Disability/Visibility \u003c/a>from her home in San Francisco.\u003c/p>\n\u003cp>Here are some highlights from her recent conversation with California Report Magazine host Sasha Khokha.\u003c/p>\n\u003cp>\u003cem>Comments have been edited for brevity and clarity. \u003c/em>\u003c/p>\n\u003cp>\u003cstrong>What’s most troubling about the COVID-19 pandemic:\u003c/strong>\u003c/p>\n\u003cp>Seeing so many people go outside and really, absolutely not social distancing, not wearing masks. It just burns me up, the way people are so ready to be over the pandemic. I don’t think we’re anywhere close to it. They’re going to actually create more infections and subsequently more deaths.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"“We’ve learned how to make do with living in a world that’s rather hostile and never designed for us in the first place. There’s a lot of lessons and insight that disabled folks have to share.”","name":"pullquote","attributes":{"named":{"size":"medium","align":"right","citation":"Alice Wong, disability rights activist","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>They’re still advising high-risk people like myself to just stay at home. I feel like this sets up this very unfair dynamic where the burden of staying safe and healthy falls upon those who are the most marginalized and the most impacted. It’s going to create additional complications, consequences that all of us are going to suffer.\u003c/p>\n\u003cp>\u003cstrong>On her recent \u003ca href=\"https://www.vox.com/first-person/2020/4/4/21204261/coronavirus-covid-19-disabled-people-disabilities-triage\">Vox essay\u003c/a>, “I’m Disabled and I need a ventilator to live. Am I expendable during this pandemic?”\u003c/strong>\u003c/p>\n\u003cp>It doesn’t surprise me that state guidelines or health systems would say, “We have only this many ventilators or this many staff or resources. You know, we really need to think about who are the most likely to benefit.” Any sort of calculus about who’s the most worthy often takes into account issues about quality of life. I do know that people see me with my wheelchair, with my ventilator on, and they just can’t imagine living this way. Some people just straight up feel like this kind of life is a life not worth living. These kinds of attitudes end up really excluding and discriminating against folks like me.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"tag":"disability","label":"related coverage "},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cstrong>How the pandemic has highlighted the importance of accessibility:\u003c/strong>\u003c/p>\n\u003cp>I think it’s bittersweet. It’s wonderful that people are suddenly realizing, “Oh, you know, we should make this concert live streaming!” That working from home should be more flexible, or learning from home. Realizing and seeing how access really does benefit everyone.\u003c/p>\n\u003cp>But I also feel some concern, and also some irritation, because disabled people have been advocating for this kind of thing for 30 years after the passage of the Americans With Disabilities Act. There’s still this idea that requesting accommodations and advocating for them is somehow asking for something extra, some unfair advantage. These kinds of adaptations should absolutely remain and become a part of the default in the ways we organize and the ways we connect as people.\u003c/p>\n\u003cp>\u003cstrong>The importance of caregivers:\u003c/strong>\u003c/p>\n\u003cp>For a lot of us, like myself, it’s basically impossible to social distance and isolate ourselves. I can’t get out of bed without help. If I’m infected or if my [caregiver] is infected, there’s really no way to protect myself from exposure.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"“It’s so troubling to see people so ready to get the economy jump-started and just relaxing everything, while so many people are dying behind closed doors. I don’t understand why there isn’t more outrage over these deaths.”","name":"pullquote","attributes":{"named":{"size":"medium","align":"right","citation":"Alice Wong, disability rights activist","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>I want the people who help me to have all the protections, equipment and everything they need. This is a workforce that’s under the category of “essential workers,” but they truly aren’t valued in our society in terms of caregiving. This is a very gendered profession where so many of the workers are women of color or immigrants. I’d like to see an increase in wages and benefits for this workforce. Access to protective gear for anyone that does this kind of work, [including] family caregivers.\u003c/p>\n\u003cp>One thing that’s really distressing to me is the number of workers and people living at nursing homes and other long-term care facilities all over California and nationally that are dying and infected with COVID-19.\u003c/p>\n\u003cp>It’s so troubling to see people so ready to get the economy jump-started and just relaxing everything, while so many people are dying behind closed doors. I don’t understand why there isn’t more outrage over these deaths, because these systems, these institutions are broken. This a really important time to think about, to rethink, about why these systems exist and to really question them.\u003c/p>\n\u003cfigure id=\"attachment_11819587\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11819587\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-800x600.jpg\" alt=\"Disability rights activist Alice Wong podcasting at her desk at home.\" width=\"800\" height=\"600\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-800x600.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-160x120.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-1020x765.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43260_podcast-katt-qut.jpg 1920w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-1832x1374.jpg 1832w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-1376x1032.jpg 1376w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-1044x783.jpg 1044w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-632x474.jpg 632w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-536x402.jpg 536w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Disability rights activist Alice Wong podcasting at her desk at home. \u003ccite>(Eddie Hernandez Photography)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>What she’s hearing from her podcast listeners:\u003c/strong>\u003c/p>\n\u003cp>We really need more stories and perspectives by the people who are most impacted by this pandemic. I’m talking about multiply-marginalized people, like black, disabled, chronically ill folks. Because we can’t separate the racism and the ableism and classism from this experience. This wasn’t the first crisis that disabled folks faced. This is just one of a long kind of arc. We’ve learned how to make do with living in a world that’s rather hostile and never designed for us in the first place. There’s a lot of lessons and insight that disabled folks have to share.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cstrong>What it would take to build an inclusive future:\u003c/strong>\u003c/p>\n\u003cp>I think the future could look so different. I think so much of what’s happened during the pandemic and the flaws in the structures and systems we have are basically a failure of imagination. What if we designed ways that people could be integrated into society with the supports and services in place so they have as much autonomy as possible? This kind of work is already happening. By communities of color, queer communities, disabled communities, in the way that we provide \u003ca href=\"https://www.kqed.org/news/11806414/coronavirus-how-these-disabled-activists-are-taking-matters-into-their-own-sanitized-hand\">mutual aid\u003c/a> and care for one another.\u003c/p>\n\u003cp>There’s such an opportunity to kind of take these lessons and scale it up so that we really can have people living the lives that they want. I feel like that’s absolutely possible. But it’s just it’s a matter of a culture shift and political will.\u003c/p>\n\u003cfigure id=\"attachment_11819597\" class=\"wp-caption aligncenter\" style=\"max-width: 389px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-11819597\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43259_Disability_Visibility6-qut.jpg\" alt=\"Alice Wong's book, Disability/Visibility: First Person Stories for the 21st Century, comes out in June 2020.\" width=\"389\" height=\"600\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43259_Disability_Visibility6-qut.jpg 778w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/05/RS43259_Disability_Visibility6-qut-160x247.jpg 160w\" sizes=\"(max-width: 389px) 100vw, 389px\">\u003cfigcaption class=\"wp-caption-text\">Alice Wong’s book, “Disability/Visibility: First Person Stories for the 21st Century,” comes out in June 2020. \u003ccite>(Courtesy of Alice Wong)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Wong’s book “\u003ca href=\"https://disabilityvisibilityproject.com/book/\">Disability/Visibility: First Person Stories for the 21st Century\u003c/a>” comes out in June.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11819539/it-just-burns-me-up-disability-activist-alice-wong-reminds-california-this-pandemic-is-far-from-over","authors":["11660","254"],"programs":["news_26731"],"categories":["news_457","news_8"],"tags":["news_28002","news_28001","news_26991","news_27350","news_27504","news_21845","news_29228","news_25262","news_27626","news_18543"],"featImg":"news_11819596","label":"source_news_11819539"}},"programsReducer":{"possible":{"id":"possible","title":"Possible","info":"Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. 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