After Alice Wong’s Death, Her Friends Vow to Keep Fighting for Disability Justice
‘I Know We Can Transform the World’: Remembering Disability Rights Activist Alice Wong
Alice Wong’s 'Disability Intimacy' Is a Deep Dive into Relationships and Community
'My Life Is in My Caregivers' Hands': Disability Advocate Alice Wong's Vision for a New Approach to Health Care
'Risk No Matter Where I Go': For Many Disabled People, a Future of Ever-Present COVID Is Daunting
'It Just Burns Me Up': Disability Activist Alice Wong Reminds California This Pandemic Is Far From Over
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"content": "\u003cp>With a smile, Brittanie Hernandez-Wilson, 38, closes her eyes when she says her friend’s name. She pauses. A tear rolls down her cheek.\u003c/p>\n\u003cp>“There’s a real level of rage that I feel around Alice’s death,” she said.\u003c/p>\n\u003cp>It’s been \u003ca href=\"https://www.kqed.org/arts/13983848/alice-wong-disability-rights-activist-obituary\"> a month\u003c/a> since disability activist and author \u003ca href=\"https://www.kqed.org/forum/2010101912041/remembering-disability-activist-alice-wong\">Alice Wong\u003c/a> died in San Francisco. Since her passing, KQED has spoken with many of Wong’s friends and collaborators in the Bay Area to better understand what motivated her decades of organizing.\u003c/p>\n\u003cp>In her writings and public appearances, Wong spoke of the need for disabled people to advocate loudly for their health needs. This mission brought together a bold and effective network of advocates living with different disabilities. But now, folks are preparing for the biggest challenge yet: more than a trillion dollars in cuts to Medicaid and other social services in the coming decade, \u003ca href=\"https://www.kqed.org/news/12058930/medicaid-cuts-could-put-services-for-disabled-californians-at-risk\">slashing a lifeline\u003c/a> for disabled people nationwide.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>“Alice fought like hell to exist in her body and mind every day,” said Hernandez-Wilson, who works for a nonprofit that advocates for domestic workers and caretakers. “There is a larger system at play that dictates if we are worthy enough of getting care.”\u003c/p>\n\u003cp>Raised in rural Minnesota, Hernandez-Wilson was the only student with a disability in her class and one of the few students of color in her entire school. “I was afraid that if I was labeled as a certain type of disabled person, I would be locked away in a classroom … that deep internalized ableism can really mess with your mind,” she said.\u003c/p>\n\u003cp>As an adult, she picked up \u003ca href=\"https://www.penguinrandomhouse.com/books/617802/disability-visibility-by-alice-wong/\">\u003cem>Disability Visibility: First-Person Stories from the Twenty-First Century\u003c/em>\u003c/a>, an anthology edited by Wong.\u003c/p>\n\u003cfigure id=\"attachment_12065500\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12065500\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00424_TV-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00424_TV-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00424_TV-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00424_TV-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Sandy Ho, left, and Brittanie Hernandez-Wilson, right, hold hands at Lake Merritt in Oakland on Nov. 24, 2025. Hernandez-Wilson and Ho, who both worked closely with disability justice leader Alice Wong, are mourning their loss, yet continuing their fight for disability justice. \u003ccite>(Tâm Vũ/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“It was the first time in my entire life that I really saw disabled people who looked like me embody self-love, embracing their body and mind,” she said. “It was like a hug from the universe.”\u003c/p>\n\u003cp>After Hernandez-Wilson moved to the Bay Area last year, Wong became her mentor and friend. They shared jokes, stories of old crushes and how each managed their health. Born with spinal muscular atrophy, Wong dealt with chronic health issues throughout her life. After a series of medical emergencies in 2022, she began communicating \u003ca href=\"https://www.kqed.org/perspectives/201601143471/alice-wong-i-still-have-a-voice-2\">through text-to-speech technology\u003c/a> and her family confirmed that her death was due to an infection.\u003c/p>\n\u003cp>“If the systems weren’t the way they are, many of our people would still be here,” said Hernandez-Wilson. But even after Wong’s passing, she said, a generation of activists mentored by her is ready to push forward a bolder vision of liberation for all disabled people.\u003c/p>\n\u003ch2>Centering the most marginalized\u003c/h2>\n\u003cp>Gifted with radiant charm and a disarming sense of humor, Wong, who was 51, built coalitions between different disabled communities. Cross-disability solidarity is \u003ca href=\"https://sinsinvalid.org/10-principles-of-disability-justice/\">a core principle of disability justice\u003c/a>, a framework developed over the last decade by queer and trans disabled activists of color in California.\u003c/p>\n\u003cp>In the 20th century, the primary objective for many disabled activists was securing equal employment, political participation and economic self-sufficiency — as outlined in the Americans with Disabilities Act of 1980.\u003c/p>\n\u003cfigure id=\"attachment_12065194\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12065194\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/250813-DisabilityCulturalCenter-10_qed.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/250813-DisabilityCulturalCenter-10_qed.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/250813-DisabilityCulturalCenter-10_qed-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/250813-DisabilityCulturalCenter-10_qed-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Alice Wong, a disability rights activist and founder of the Disability Visibility Project, sits in the courtyard at the Disability Cultural Center on Aug. 13, 2025. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>This organizing was rooted in the Bay Area: the independent living movement \u003ca href=\"https://www.kalw.org/news/2017-04-05/berkeley-disability-activists-took-cues-from-the-civil-rights-era-and-sparked-a-national-movement\">took off here in the 1970s\u003c/a>; activists in Berkeley created the state’s \u003ca href=\"https://www.pbs.org/wgbh/americanexperience/features/they-took-sledgehammers-sidewalks-heres-why-curb-cut-effect/\">first sidewalk curb cuts\u003c/a>; and in 1977, \u003ca href=\"https://www.kqed.org/arts/13966861/judith-heumann-disability-rights-uc-berkeley-center-independent-living\">more than 100 disabled protesters\u003c/a> occupied the San Francisco Federal Building to demand implementation of the rule that prohibited discrimination based on disability in federally funded programs.\u003c/p>\n\u003cp>Proponents of disability justice maintain that ableism affects everyone — particularly those living with disabilities — and call for a future free of all systems that oppress disabled people. This fight, Wong said in \u003ca href=\"https://www.buzzsprout.com/2003809/episodes/10799918-making-the-world-brighter-sassier-and-more-colorful-alice-wong-on-disability-justice\">a 2022 podcast\u003c/a>, “must center on the most marginalized.” Nowhere is this more necessary, she added, than in a post-COVID world.\u003c/p>\n\u003cp>While cities and states rushed to loosen pandemic restrictions, Wong pushed back and demanded hospitals — including her own care provider, UCSF — continue \u003ca href=\"https://disabilityvisibilityproject.com/2024/01/25/n95s4ucsf-call-to-action/\">requiring face masks\u003c/a> and expand \u003ca href=\"https://nursing.ucsf.edu/news/disability-and-health-care-conversation-activist-alice-wong\">research into treatments\u003c/a> for those living with long COVID.[aside postID=news_11984990 hero='https://cdn.kqed.org/wp-content/uploads/sites/10/2023/12/Featured-photo-horizontal-Alice-Wong-1020x574.png']That’s how she met Charlie McCone.\u003c/p>\n\u003cp>Before contracting COVID in 2020, McCone, 35, said he had never experienced a serious health problem before.\u003c/p>\n\u003cp>“When you go from biking 10 miles a day to work to being housebound indefinitely, losing your job and not having any answers from the medical system, it is absolutely devastating,” he said.\u003c/p>\n\u003cp>\u003ca href=\"https://www.kqed.org/news/tag/long-covid\">Long COVID\u003c/a> — a chronic condition that follows many coronavirus infections and still confounds researchers — permanently altered McCone’s life.\u003c/p>\n\u003cp>Searching for answers to his condition, he joined Twitter (now known as X). From his San Francisco home, he shared his experiences online, hoping more people would take long COVID seriously. But after two years, “I came to the realization that otherwise good and reasonable people are still completely unfazed by the fact that their next COVID infection could cause extreme harm to them or their family,” he said.\u003c/p>\n\u003cp>He started to feel rage at the injustices he saw.\u003c/p>\n\u003cp>“People disabled by this virus and those already disabled prior to the pandemic are being completely disregarded and considered disposable by the general public,” he said.\u003c/p>\n\u003ch2>Preparing for cuts\u003c/h2>\n\u003cp>While others recommended he temper his emotions online, Wong encouraged McCone to lean into them. They met in person for the first time in 2023 over tea and soon got to work: over the next year, their online network launched \u003ca href=\"https://disabilityvisibilityproject.com/2024/01/02/disabled-outrage-and-podsavejon/\">a massive social media campaign\u003c/a> to pressure federal lawmakers to address the needs of those with long COVID.\u003c/p>\n\u003cp>Their efforts would bear fruit in January 2024 when Sen. Bernie Sanders (I-Vermont) held the \u003ca href=\"https://www.npr.org/2024/01/20/1225862790/advocates-push-for-greater-investment-in-long-covid-research-at-senate-hearing\">first Congressional hearing\u003c/a> on long COVID. Patients and doctors testified and called for long-term investments in research. Democrats \u003ca href=\"https://www.kqed.org/news/12006894/bay-areas-long-covid-community-celebrates-moonshot-bill-for-10-billion-in-funding\">later proposed $10 billion\u003c/a> in funding for research, treatment and education.\u003c/p>\n\u003cfigure id=\"attachment_12052187\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12052187\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">(From left) Eli Gelardin, Director of the Mayor’s Office on Disability, speaks with Alice Wong, a disability rights activist, and Debbie Kaplan, Deputy Director of Programmatic Access, at the Disability Cultural Center on Aug. 13, 2025. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“Alice could make incredibly meaningful change through media,” McCone said, adding that folks living with long COVID need to keep sharing their stories — now more than ever.\u003c/p>\n\u003cp>Legislation to fund long COVID research has stalled since Republicans took control of Congress, but the Trump administration is moving quickly to implement \u003ca href=\"https://www.kqed.org/science/1997707/how-will-trumps-mega-bill-impact-health-care-in-california\">major health care reforms\u003c/a> outlined in the sweeping legislation known as the One Big Beautiful Bill.\u003c/p>\n\u003cp>The bill establishes \u003ca href=\"https://www.kqed.org/news/12047647/trumps-health-law-spurs-big-medi-cal-changes-what-californians-need-to-know\">new eligibility rules for Medi-Cal\u003c/a>, the state’s Medicaid program that covers over 15 million low-income Californians. State health officials predict that up to 3.4 million Medi-Cal recipients could lose their coverage in the coming years under new rules that include more frequent eligibility screenings and work requirements for certain groups. While the White House \u003ca href=\"https://www.whitehouse.gov/articles/2025/06/myth-vs-fact-the-one-big-beautiful-bill/\">insists\u003c/a> that the bill will not take coverage away from Americans with disabilities, \u003ca href=\"https://www.kqed.org/news/12058930/medicaid-cuts-could-put-services-for-disabled-californians-at-risk\">independent policy experts note\u003c/a> that California will lose matching federal funds as residents lose their Medi-Cal coverage.\u003c/p>\n\u003cp>State lawmakers could respond by \u003ca href=\"https://www.healthaffairs.org/content/forefront/history-repeats-faced-medicaid-cuts-states-reduced-support-older-adults-and-disabled\">cutting home and community-based services\u003c/a>, which allow people with disabilities to receive treatment, care and job training in their own communities rather than in institutions like nursing homes.\u003c/p>\n\u003cp>“If you really want people with disabilities to get jobs, then you don’t cut the health care that allows people to stay well enough to work,” said Silvia Yee, public policy director at the Berkeley-based Disability Rights Education and Defense Fund. “You don’t cut the services that help people with disabilities navigate hiring and settling into a job.”\u003c/p>\n\u003cp>Besides Medicaid changes, Yee noted that the One Big Beautiful Bill also failed to extend subsidies for people who bought health insurance through Affordable Care Act marketplaces like Covered California. Many people with a disability or chronic illness have an ACA insurance plan and will have to pay more to receive necessary care.\u003c/p>\n\u003cp>“These all seem like different cuts, but they affect the same pool of people,” Yee said. “All of this together makes it incredibly hard for people with disabilities to participate and live as part of the community.”\u003c/p>\n\u003ch2>‘The weight of carrying out disability justice’\u003c/h2>\n\u003cp>The future can quite often feel precarious when you’re disabled, said Sandy Ho, one of Wong’s closest friends and executive director of the Disability and Philanthropy Forum. Ho, originally from Boston, met Wong 15 years ago online. They didn’t meet in person until Ho moved to Oakland, but the bond of their friendship endured.\u003c/p>\n\u003cp>“There are always forces trying to take away our health care, and Alice understood that on a level that emboldened her to just say, ‘F— it all, either you’re with me, or you’re not,’” said Ho, who Wong tasked with carrying forward some of her unfinished projects, including her next book.\u003c/p>\n\u003cfigure id=\"attachment_12065498\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12065498\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00080_TV-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00080_TV-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00080_TV-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00080_TV-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Sandy Ho, a disability justice activist, poses for a portrait at Lake Merritt in Oakland on Nov. 24, 2025. Ho worked closely with Alice Wong, a disability justice leader who died in November. \u003ccite>(Tâm Vũ/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“So many of us got to witness her life and be a part of it on so many different levels,” she said, adding that Wong loved organizing dinner parties for her friends, bringing together artists, organizers, researchers and health care workers. “She is our future — the future looks like getting fed really well because disabled people deserve delicious things. Disabled people deserve joy, to have fun and create.”\u003c/p>\n\u003cp>This year also saw the death of another leader in the disabled community: Patty Berne — co-founder of the Bay Area-based performance group \u003ca href=\"https://sinsinvalid.org/about-sins/\">Sins Invalid\u003c/a> and one of the minds behind the disability justice framework — \u003ca href=\"https://19thnews.org/2025/08/patty-berne-obituary-disability-justice-movement/\">died last May in Berkeley\u003c/a>.\u003c/p>\n\u003cp>“One of the things that I have unfortunately experienced a lot in the disability community is grief,” said Rosemary McDonnell-Horita, a Berkeley-based writer who was a friend to Wong and Berne. “The depths of love also come with the depths of grief.”\u003c/p>\n\u003cp>Campaigns both online and in Sacramento \u003ca href=\"https://dredf.org/oppose-cuts-to-medi-cal/\">are already underway\u003c/a> to protect Medi-Cal funding that serves disabled Californians. Other friends of Wong are \u003ca href=\"https://llps.substack.com/p/alice-wong-was-crips-for-esims-for\">continuing her call\u003c/a> to help provide disabled Palestinians in Gaza with cellular data. And McDonnell-Horita plans to keep working on a project that Wong loudly cheered: a cookbook for disabled people by disabled people.\u003c/p>\n\u003cp>“We all now bear the weight of carrying out disability justice to the best of our ability,” she said.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n",
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"excerpt": "Friends, activists and policy experts reflect on Alice Wong’s legacy as looming Medicaid cuts threaten critical services for disabled people in California and nationwide.",
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"title": "After Alice Wong’s Death, Her Friends Vow to Keep Fighting for Disability Justice | KQED",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>With a smile, Brittanie Hernandez-Wilson, 38, closes her eyes when she says her friend’s name. She pauses. A tear rolls down her cheek.\u003c/p>\n\u003cp>“There’s a real level of rage that I feel around Alice’s death,” she said.\u003c/p>\n\u003cp>It’s been \u003ca href=\"https://www.kqed.org/arts/13983848/alice-wong-disability-rights-activist-obituary\"> a month\u003c/a> since disability activist and author \u003ca href=\"https://www.kqed.org/forum/2010101912041/remembering-disability-activist-alice-wong\">Alice Wong\u003c/a> died in San Francisco. Since her passing, KQED has spoken with many of Wong’s friends and collaborators in the Bay Area to better understand what motivated her decades of organizing.\u003c/p>\n\u003cp>In her writings and public appearances, Wong spoke of the need for disabled people to advocate loudly for their health needs. This mission brought together a bold and effective network of advocates living with different disabilities. But now, folks are preparing for the biggest challenge yet: more than a trillion dollars in cuts to Medicaid and other social services in the coming decade, \u003ca href=\"https://www.kqed.org/news/12058930/medicaid-cuts-could-put-services-for-disabled-californians-at-risk\">slashing a lifeline\u003c/a> for disabled people nationwide.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“Alice fought like hell to exist in her body and mind every day,” said Hernandez-Wilson, who works for a nonprofit that advocates for domestic workers and caretakers. “There is a larger system at play that dictates if we are worthy enough of getting care.”\u003c/p>\n\u003cp>Raised in rural Minnesota, Hernandez-Wilson was the only student with a disability in her class and one of the few students of color in her entire school. “I was afraid that if I was labeled as a certain type of disabled person, I would be locked away in a classroom … that deep internalized ableism can really mess with your mind,” she said.\u003c/p>\n\u003cp>As an adult, she picked up \u003ca href=\"https://www.penguinrandomhouse.com/books/617802/disability-visibility-by-alice-wong/\">\u003cem>Disability Visibility: First-Person Stories from the Twenty-First Century\u003c/em>\u003c/a>, an anthology edited by Wong.\u003c/p>\n\u003cfigure id=\"attachment_12065500\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12065500\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00424_TV-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00424_TV-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00424_TV-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00424_TV-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Sandy Ho, left, and Brittanie Hernandez-Wilson, right, hold hands at Lake Merritt in Oakland on Nov. 24, 2025. Hernandez-Wilson and Ho, who both worked closely with disability justice leader Alice Wong, are mourning their loss, yet continuing their fight for disability justice. \u003ccite>(Tâm Vũ/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“It was the first time in my entire life that I really saw disabled people who looked like me embody self-love, embracing their body and mind,” she said. “It was like a hug from the universe.”\u003c/p>\n\u003cp>After Hernandez-Wilson moved to the Bay Area last year, Wong became her mentor and friend. They shared jokes, stories of old crushes and how each managed their health. Born with spinal muscular atrophy, Wong dealt with chronic health issues throughout her life. After a series of medical emergencies in 2022, she began communicating \u003ca href=\"https://www.kqed.org/perspectives/201601143471/alice-wong-i-still-have-a-voice-2\">through text-to-speech technology\u003c/a> and her family confirmed that her death was due to an infection.\u003c/p>\n\u003cp>“If the systems weren’t the way they are, many of our people would still be here,” said Hernandez-Wilson. But even after Wong’s passing, she said, a generation of activists mentored by her is ready to push forward a bolder vision of liberation for all disabled people.\u003c/p>\n\u003ch2>Centering the most marginalized\u003c/h2>\n\u003cp>Gifted with radiant charm and a disarming sense of humor, Wong, who was 51, built coalitions between different disabled communities. Cross-disability solidarity is \u003ca href=\"https://sinsinvalid.org/10-principles-of-disability-justice/\">a core principle of disability justice\u003c/a>, a framework developed over the last decade by queer and trans disabled activists of color in California.\u003c/p>\n\u003cp>In the 20th century, the primary objective for many disabled activists was securing equal employment, political participation and economic self-sufficiency — as outlined in the Americans with Disabilities Act of 1980.\u003c/p>\n\u003cfigure id=\"attachment_12065194\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12065194\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/250813-DisabilityCulturalCenter-10_qed.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/250813-DisabilityCulturalCenter-10_qed.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/250813-DisabilityCulturalCenter-10_qed-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/250813-DisabilityCulturalCenter-10_qed-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Alice Wong, a disability rights activist and founder of the Disability Visibility Project, sits in the courtyard at the Disability Cultural Center on Aug. 13, 2025. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>This organizing was rooted in the Bay Area: the independent living movement \u003ca href=\"https://www.kalw.org/news/2017-04-05/berkeley-disability-activists-took-cues-from-the-civil-rights-era-and-sparked-a-national-movement\">took off here in the 1970s\u003c/a>; activists in Berkeley created the state’s \u003ca href=\"https://www.pbs.org/wgbh/americanexperience/features/they-took-sledgehammers-sidewalks-heres-why-curb-cut-effect/\">first sidewalk curb cuts\u003c/a>; and in 1977, \u003ca href=\"https://www.kqed.org/arts/13966861/judith-heumann-disability-rights-uc-berkeley-center-independent-living\">more than 100 disabled protesters\u003c/a> occupied the San Francisco Federal Building to demand implementation of the rule that prohibited discrimination based on disability in federally funded programs.\u003c/p>\n\u003cp>Proponents of disability justice maintain that ableism affects everyone — particularly those living with disabilities — and call for a future free of all systems that oppress disabled people. This fight, Wong said in \u003ca href=\"https://www.buzzsprout.com/2003809/episodes/10799918-making-the-world-brighter-sassier-and-more-colorful-alice-wong-on-disability-justice\">a 2022 podcast\u003c/a>, “must center on the most marginalized.” Nowhere is this more necessary, she added, than in a post-COVID world.\u003c/p>\n\u003cp>While cities and states rushed to loosen pandemic restrictions, Wong pushed back and demanded hospitals — including her own care provider, UCSF — continue \u003ca href=\"https://disabilityvisibilityproject.com/2024/01/25/n95s4ucsf-call-to-action/\">requiring face masks\u003c/a> and expand \u003ca href=\"https://nursing.ucsf.edu/news/disability-and-health-care-conversation-activist-alice-wong\">research into treatments\u003c/a> for those living with long COVID.\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>That’s how she met Charlie McCone.\u003c/p>\n\u003cp>Before contracting COVID in 2020, McCone, 35, said he had never experienced a serious health problem before.\u003c/p>\n\u003cp>“When you go from biking 10 miles a day to work to being housebound indefinitely, losing your job and not having any answers from the medical system, it is absolutely devastating,” he said.\u003c/p>\n\u003cp>\u003ca href=\"https://www.kqed.org/news/tag/long-covid\">Long COVID\u003c/a> — a chronic condition that follows many coronavirus infections and still confounds researchers — permanently altered McCone’s life.\u003c/p>\n\u003cp>Searching for answers to his condition, he joined Twitter (now known as X). From his San Francisco home, he shared his experiences online, hoping more people would take long COVID seriously. But after two years, “I came to the realization that otherwise good and reasonable people are still completely unfazed by the fact that their next COVID infection could cause extreme harm to them or their family,” he said.\u003c/p>\n\u003cp>He started to feel rage at the injustices he saw.\u003c/p>\n\u003cp>“People disabled by this virus and those already disabled prior to the pandemic are being completely disregarded and considered disposable by the general public,” he said.\u003c/p>\n\u003ch2>Preparing for cuts\u003c/h2>\n\u003cp>While others recommended he temper his emotions online, Wong encouraged McCone to lean into them. They met in person for the first time in 2023 over tea and soon got to work: over the next year, their online network launched \u003ca href=\"https://disabilityvisibilityproject.com/2024/01/02/disabled-outrage-and-podsavejon/\">a massive social media campaign\u003c/a> to pressure federal lawmakers to address the needs of those with long COVID.\u003c/p>\n\u003cp>Their efforts would bear fruit in January 2024 when Sen. Bernie Sanders (I-Vermont) held the \u003ca href=\"https://www.npr.org/2024/01/20/1225862790/advocates-push-for-greater-investment-in-long-covid-research-at-senate-hearing\">first Congressional hearing\u003c/a> on long COVID. Patients and doctors testified and called for long-term investments in research. Democrats \u003ca href=\"https://www.kqed.org/news/12006894/bay-areas-long-covid-community-celebrates-moonshot-bill-for-10-billion-in-funding\">later proposed $10 billion\u003c/a> in funding for research, treatment and education.\u003c/p>\n\u003cfigure id=\"attachment_12052187\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12052187\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">(From left) Eli Gelardin, Director of the Mayor’s Office on Disability, speaks with Alice Wong, a disability rights activist, and Debbie Kaplan, Deputy Director of Programmatic Access, at the Disability Cultural Center on Aug. 13, 2025. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“Alice could make incredibly meaningful change through media,” McCone said, adding that folks living with long COVID need to keep sharing their stories — now more than ever.\u003c/p>\n\u003cp>Legislation to fund long COVID research has stalled since Republicans took control of Congress, but the Trump administration is moving quickly to implement \u003ca href=\"https://www.kqed.org/science/1997707/how-will-trumps-mega-bill-impact-health-care-in-california\">major health care reforms\u003c/a> outlined in the sweeping legislation known as the One Big Beautiful Bill.\u003c/p>\n\u003cp>The bill establishes \u003ca href=\"https://www.kqed.org/news/12047647/trumps-health-law-spurs-big-medi-cal-changes-what-californians-need-to-know\">new eligibility rules for Medi-Cal\u003c/a>, the state’s Medicaid program that covers over 15 million low-income Californians. State health officials predict that up to 3.4 million Medi-Cal recipients could lose their coverage in the coming years under new rules that include more frequent eligibility screenings and work requirements for certain groups. While the White House \u003ca href=\"https://www.whitehouse.gov/articles/2025/06/myth-vs-fact-the-one-big-beautiful-bill/\">insists\u003c/a> that the bill will not take coverage away from Americans with disabilities, \u003ca href=\"https://www.kqed.org/news/12058930/medicaid-cuts-could-put-services-for-disabled-californians-at-risk\">independent policy experts note\u003c/a> that California will lose matching federal funds as residents lose their Medi-Cal coverage.\u003c/p>\n\u003cp>State lawmakers could respond by \u003ca href=\"https://www.healthaffairs.org/content/forefront/history-repeats-faced-medicaid-cuts-states-reduced-support-older-adults-and-disabled\">cutting home and community-based services\u003c/a>, which allow people with disabilities to receive treatment, care and job training in their own communities rather than in institutions like nursing homes.\u003c/p>\n\u003cp>“If you really want people with disabilities to get jobs, then you don’t cut the health care that allows people to stay well enough to work,” said Silvia Yee, public policy director at the Berkeley-based Disability Rights Education and Defense Fund. “You don’t cut the services that help people with disabilities navigate hiring and settling into a job.”\u003c/p>\n\u003cp>Besides Medicaid changes, Yee noted that the One Big Beautiful Bill also failed to extend subsidies for people who bought health insurance through Affordable Care Act marketplaces like Covered California. Many people with a disability or chronic illness have an ACA insurance plan and will have to pay more to receive necessary care.\u003c/p>\n\u003cp>“These all seem like different cuts, but they affect the same pool of people,” Yee said. “All of this together makes it incredibly hard for people with disabilities to participate and live as part of the community.”\u003c/p>\n\u003ch2>‘The weight of carrying out disability justice’\u003c/h2>\n\u003cp>The future can quite often feel precarious when you’re disabled, said Sandy Ho, one of Wong’s closest friends and executive director of the Disability and Philanthropy Forum. Ho, originally from Boston, met Wong 15 years ago online. They didn’t meet in person until Ho moved to Oakland, but the bond of their friendship endured.\u003c/p>\n\u003cp>“There are always forces trying to take away our health care, and Alice understood that on a level that emboldened her to just say, ‘F— it all, either you’re with me, or you’re not,’” said Ho, who Wong tasked with carrying forward some of her unfinished projects, including her next book.\u003c/p>\n\u003cfigure id=\"attachment_12065498\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12065498\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00080_TV-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00080_TV-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00080_TV-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00080_TV-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Sandy Ho, a disability justice activist, poses for a portrait at Lake Merritt in Oakland on Nov. 24, 2025. Ho worked closely with Alice Wong, a disability justice leader who died in November. \u003ccite>(Tâm Vũ/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“So many of us got to witness her life and be a part of it on so many different levels,” she said, adding that Wong loved organizing dinner parties for her friends, bringing together artists, organizers, researchers and health care workers. “She is our future — the future looks like getting fed really well because disabled people deserve delicious things. Disabled people deserve joy, to have fun and create.”\u003c/p>\n\u003cp>This year also saw the death of another leader in the disabled community: Patty Berne — co-founder of the Bay Area-based performance group \u003ca href=\"https://sinsinvalid.org/about-sins/\">Sins Invalid\u003c/a> and one of the minds behind the disability justice framework — \u003ca href=\"https://19thnews.org/2025/08/patty-berne-obituary-disability-justice-movement/\">died last May in Berkeley\u003c/a>.\u003c/p>\n\u003cp>“One of the things that I have unfortunately experienced a lot in the disability community is grief,” said Rosemary McDonnell-Horita, a Berkeley-based writer who was a friend to Wong and Berne. “The depths of love also come with the depths of grief.”\u003c/p>\n\u003cp>Campaigns both online and in Sacramento \u003ca href=\"https://dredf.org/oppose-cuts-to-medi-cal/\">are already underway\u003c/a> to protect Medi-Cal funding that serves disabled Californians. Other friends of Wong are \u003ca href=\"https://llps.substack.com/p/alice-wong-was-crips-for-esims-for\">continuing her call\u003c/a> to help provide disabled Palestinians in Gaza with cellular data. And McDonnell-Horita plans to keep working on a project that Wong loudly cheered: a cookbook for disabled people by disabled people.\u003c/p>\n\u003cp>“We all now bear the weight of carrying out disability justice to the best of our ability,” she said.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cp>\u003cspan style=\"font-weight: 400\">Alice Wong, a disability rights activist, writer, and MacArthur Genius award winner based in San Francisco, died last Friday at UCSF at the age of 51. Wong was best known as the founder of the\u003c/span>\u003ca href=\"https://disabilityvisibilityproject.com/\">\u003cspan style=\"font-weight: 400\"> Disability Visibility Project\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> (DVP), a group that highlights disabled people and disability culture through storytelling projects, social media and other channels.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Alice’s friend and fellow activist, Sandy Ho, wrote, “Alice Wong was a hysterical friend, writer, activist and disability justice luminary whose influence was outsized.” Today, we remember Wong by sharing a radio essay she recorded for The California Report Magazine in December 2022.\u003c/span>\u003c/p>\n\u003cp>\u003c!-- iframe plugin v.4.3 wordpress.org/plugins/iframe/ -->\u003cbr>\n\u003ciframe loading=\"lazy\" frameborder=\"0\" height=\"200\" scrolling=\"no\" src=\"https://playlist.megaphone.fm?e=KQINC2770679635\" width=\"100%\" class=\"iframe-class\">\u003c/iframe>\u003c/p>\n\u003cp>\u003cstrong>Links:\u003c/strong>\u003c/p>\n\u003cul>\n\u003cli style=\"font-weight: 400\">\u003ca href=\"https://www.gofundme.com/f/alice-wong-stay-in-community\">\u003cspan style=\"font-weight: 400\">Alice’s GoFundMe\u003c/span>\u003c/a>\u003c/li>\n\u003cli style=\"font-weight: 400\">\u003ca href=\"https://www.kqed.org/arts/13983848/alice-wong-disability-rights-activist-obituary\">\u003cspan style=\"font-weight: 400\">Disability Rights Activist and Author Alice Wong Dies at 51 | KQED\u003c/span>\u003c/a>\u003c/li>\n\u003cli style=\"font-weight: 400\">\u003ca href=\"https://www.kqed.org/forum/2010101908618/bay-area-legends-activist-alice-wong-and-the-power-of-bringing-visibility-to-disability\">\u003cspan style=\"font-weight: 400\">Bay Area Legends: Activist Alice Wong and The Power of Bringing Visibility to Disability\u003c/span>\u003c/a>\u003c/li>\n\u003c/ul>\n\u003cp>\u003cem>This is a computer-generated transcript. While our team has reviewed it, there may be errors.\u003c/em>\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003cstrong>Ericka Cruz Guevarra: \u003c/strong>I’m Ericka Cruz Guevarra and welcome to the bay. Local news to keep you rooted.\u003c/p>\n\u003cp>\u003cstrong>Ericka Cruz Guevarra: \u003c/strong>In April 2020, just one month after the World Health Organization declared Covid19 a global pandemic, disability rights activist Alice Wong stood out as one of the most outspoken critics of our public response. Social distancing was still this awkward dance that not everyone took seriously. People were still going out. Masks were still an option, not a requirement. And Alice argued that this was putting the most vulnerable at risk:\u003c/p>\n\u003cp>\u003cstrong>Alice Wong: \u003c/strong>It just burns me up. 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.\u003c/p>\n\u003cp>\u003cstrong>Ericka Cruz Guevarra: \u003c/strong>Wong, a disability rights advocate, author, and MacArthur genius, insisted that the disabled community had a lot of wisdom to share with the rest of us at this strange moment; Wisdom around being nimble, and taking care of each other… How access and accommodations that disabled people often pushed for – like, working from home or live streaming public events and concerts, were suddenly beneficial to \u003ci>everyone.\u003c/i>\u003c/p>\n\u003cp>\u003cstrong>Alice Wong:\u003c/strong> This wasn’t the first crisis that disabled folks faced. We’ve had to make due with living in a world that’s rather hostile and not designed for us in the first place.\u003c/p>\n\u003cp>\u003cstrong>Ericka Cruz Guevarra: \u003c/strong>Alice Wong, who lived in San Francisco, died last Friday. She was 51 years old. Wong leaves behind an incredible archive and legacy of disability justice, stories, and community organizing. Today, we’re sharing this essay Alice wrote in 2022: About her vision for a new approach to health care… And how prioritizing the most \u003ci>vulnerable \u003c/i>in our society… lifts us all up. That’s coming up. Right after this break.\u003c/p>\n\u003cp>\u003cstrong><ad break>\u003c/strong>\u003c/p>\n\u003cp>\u003cb>Alice Wong:\u003c/b> 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>\n\u003cp>Over the summer I experienced several medical crises, such as a collapsed lung and an inability to swallow, which resulted in a tracheostomy that’s connected to a ventilator. I also now have a G-J tube that delivers liquid nutrition to my small intestine and stomach.\u003c/p>\n\u003cp>And now I speak through this app.\u003c/p>\n\u003cp>In the span of four weeks, my entire world was turned upside down.\u003c/p>\n\u003cp>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.\u003c/p>\n\u003cp>It was the only time I cried in the hospital.\u003c/p>\n\u003cp>\u003ci>[Sound of a hospital bed’s movement]\u003c/i>\u003c/p>\n\u003cp>That sound you just heard is of my hospital bed, one of many types of medical equipment I depend on. 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. My life is in my caregivers’ hands and this is a cost I must pay because I want to live.\u003c/p>\n\u003cp>Having multiple caregivers, training and communicating with them, and dealing with unexpected ups and downs when they are late, sick, or forget to show up has taken a lot out of me as I try to recover and heal.\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>I already receive hours of care through two programs, but it was impossible finding workers because of low wages, worker shortages, and the fluidic nature of the workforce. So I resorted to hiring a team of private-pay caregivers to augment the help I receive from my family. By the way, the \u003ca href=\"https://www.cdss.ca.gov/inforesources/ihss/county-ihss-wage-rates\">wage rate for home care workers\u003c/a> in the programs I am on is a paltry $18.75 per hour in San Francisco, which is not a livable wage in such an expensive city.\u003c/p>\n\u003cp>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.\u003c/p>\n\u003cp>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 which are all scams.\u003c/p>\n\u003cp>\u003ci>[Sound of a ventilator]\u003c/i>\u003c/p>\n\u003cp>That’s the alarm from my ventilator, which happens when I am disconnected or something is wrong and my caregivers or family members have to immediately check on me. 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 yet, care work is different. We share a mutual vulnerability shaped by structural and institutional inequality.\u003c/p>\n\u003cp>According to the UCLA Labor Center, as of 2019 there were at least \u003ca href=\"https://www.labor.ucla.edu/wp-content/uploads/2022/03/Lives-and-Livelihood-Report-1.pdf\">1.75 million disabled adults under 65\u003c/a> in California who needed home care.\u003c/p>\n\u003cp>I wrote about the future of care infrastructure in my memoir, \u003ci>Year of the Tiger: An Activist’s Life\u003c/i>. They are not unfeasible dreams. Change comes from wild imaginings of what is possible.\u003c/p>\n\u003cp>In the future care infrastructure will be …\u003c/p>\n\u003cp>One that treats care as a normal part of the human lifespan and not a failure or weakness to need help.\u003c/p>\n\u003cp>One led and designed by disabled people and others who need or provide care.\u003c/p>\n\u003cp>One that is free, publicly funded, and not means-tested or linked to employment.\u003c/p>\n\u003cp>One that puts a primacy on self-direction of the individual, bodily autonomy, and dignity of risk rather than a formulaic, medicalized training that dehumanizes disabled, older and chronically ill people.\u003c/p>\n\u003cp>\u003ci>[Sound of suction machine]\u003c/i>\u003c/p>\n\u003cp>And this is the sound of another essential piece of equipment, a suction machine that helps me clear my lungs of secretions that I produce almost every hour. 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.\u003c/p>\n\u003cp>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>Manifesting this dream from San Francisco, for The California Report, I’m Alice Wong.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cstrong>Ericka Cruz Guevarra: \u003c/strong>That was disability rights activist Alice Wong,for The California Report Magazine back in Dec 2022. There is a GOFUNDME set up to help continue the legacy of Alice’s work. We’ll leave you a link to that in our show notes.\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003cspan style=\"font-weight: 400\">Alice Wong, a disability rights activist, writer, and MacArthur Genius award winner based in San Francisco, died last Friday at UCSF at the age of 51. Wong was best known as the founder of the\u003c/span>\u003ca href=\"https://disabilityvisibilityproject.com/\">\u003cspan style=\"font-weight: 400\"> Disability Visibility Project\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> (DVP), a group that highlights disabled people and disability culture through storytelling projects, social media and other channels.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Alice’s friend and fellow activist, Sandy Ho, wrote, “Alice Wong was a hysterical friend, writer, activist and disability justice luminary whose influence was outsized.” Today, we remember Wong by sharing a radio essay she recorded for The California Report Magazine in December 2022.\u003c/span>\u003c/p>\n\u003cp>\u003c!-- iframe plugin v.4.3 wordpress.org/plugins/iframe/ -->\u003cbr>\n\u003ciframe loading=\"lazy\" frameborder=\"0\" height=\"200\" scrolling=\"no\" src=\"https://playlist.megaphone.fm?e=KQINC2770679635\" width=\"100%\" class=\"iframe-class\">\u003c/iframe>\u003c/p>\n\u003cp>\u003cstrong>Links:\u003c/strong>\u003c/p>\n\u003cul>\n\u003cli style=\"font-weight: 400\">\u003ca href=\"https://www.gofundme.com/f/alice-wong-stay-in-community\">\u003cspan style=\"font-weight: 400\">Alice’s GoFundMe\u003c/span>\u003c/a>\u003c/li>\n\u003cli style=\"font-weight: 400\">\u003ca href=\"https://www.kqed.org/arts/13983848/alice-wong-disability-rights-activist-obituary\">\u003cspan style=\"font-weight: 400\">Disability Rights Activist and Author Alice Wong Dies at 51 | KQED\u003c/span>\u003c/a>\u003c/li>\n\u003cli style=\"font-weight: 400\">\u003ca href=\"https://www.kqed.org/forum/2010101908618/bay-area-legends-activist-alice-wong-and-the-power-of-bringing-visibility-to-disability\">\u003cspan style=\"font-weight: 400\">Bay Area Legends: Activist Alice Wong and The Power of Bringing Visibility to Disability\u003c/span>\u003c/a>\u003c/li>\n\u003c/ul>\n\u003cp>\u003cem>This is a computer-generated transcript. While our team has reviewed it, there may be errors.\u003c/em>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cstrong>Ericka Cruz Guevarra: \u003c/strong>I’m Ericka Cruz Guevarra and welcome to the bay. Local news to keep you rooted.\u003c/p>\n\u003cp>\u003cstrong>Ericka Cruz Guevarra: \u003c/strong>In April 2020, just one month after the World Health Organization declared Covid19 a global pandemic, disability rights activist Alice Wong stood out as one of the most outspoken critics of our public response. Social distancing was still this awkward dance that not everyone took seriously. People were still going out. Masks were still an option, not a requirement. And Alice argued that this was putting the most vulnerable at risk:\u003c/p>\n\u003cp>\u003cstrong>Alice Wong: \u003c/strong>It just burns me up. 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.\u003c/p>\n\u003cp>\u003cstrong>Ericka Cruz Guevarra: \u003c/strong>Wong, a disability rights advocate, author, and MacArthur genius, insisted that the disabled community had a lot of wisdom to share with the rest of us at this strange moment; Wisdom around being nimble, and taking care of each other… How access and accommodations that disabled people often pushed for – like, working from home or live streaming public events and concerts, were suddenly beneficial to \u003ci>everyone.\u003c/i>\u003c/p>\n\u003cp>\u003cstrong>Alice Wong:\u003c/strong> This wasn’t the first crisis that disabled folks faced. We’ve had to make due with living in a world that’s rather hostile and not designed for us in the first place.\u003c/p>\n\u003cp>\u003cstrong>Ericka Cruz Guevarra: \u003c/strong>Alice Wong, who lived in San Francisco, died last Friday. She was 51 years old. Wong leaves behind an incredible archive and legacy of disability justice, stories, and community organizing. Today, we’re sharing this essay Alice wrote in 2022: About her vision for a new approach to health care… And how prioritizing the most \u003ci>vulnerable \u003c/i>in our society… lifts us all up. That’s coming up. Right after this break.\u003c/p>\n\u003cp>\u003cstrong><ad break>\u003c/strong>\u003c/p>\n\u003cp>\u003cb>Alice Wong:\u003c/b> 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>\n\u003cp>Over the summer I experienced several medical crises, such as a collapsed lung and an inability to swallow, which resulted in a tracheostomy that’s connected to a ventilator. I also now have a G-J tube that delivers liquid nutrition to my small intestine and stomach.\u003c/p>\n\u003cp>And now I speak through this app.\u003c/p>\n\u003cp>In the span of four weeks, my entire world was turned upside down.\u003c/p>\n\u003cp>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.\u003c/p>\n\u003cp>It was the only time I cried in the hospital.\u003c/p>\n\u003cp>\u003ci>[Sound of a hospital bed’s movement]\u003c/i>\u003c/p>\n\u003cp>That sound you just heard is of my hospital bed, one of many types of medical equipment I depend on. 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. My life is in my caregivers’ hands and this is a cost I must pay because I want to live.\u003c/p>\n\u003cp>Having multiple caregivers, training and communicating with them, and dealing with unexpected ups and downs when they are late, sick, or forget to show up has taken a lot out of me as I try to recover and heal.\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>I already receive hours of care through two programs, but it was impossible finding workers because of low wages, worker shortages, and the fluidic nature of the workforce. So I resorted to hiring a team of private-pay caregivers to augment the help I receive from my family. By the way, the \u003ca href=\"https://www.cdss.ca.gov/inforesources/ihss/county-ihss-wage-rates\">wage rate for home care workers\u003c/a> in the programs I am on is a paltry $18.75 per hour in San Francisco, which is not a livable wage in such an expensive city.\u003c/p>\n\u003cp>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.\u003c/p>\n\u003cp>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 which are all scams.\u003c/p>\n\u003cp>\u003ci>[Sound of a ventilator]\u003c/i>\u003c/p>\n\u003cp>That’s the alarm from my ventilator, which happens when I am disconnected or something is wrong and my caregivers or family members have to immediately check on me. 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 yet, care work is different. We share a mutual vulnerability shaped by structural and institutional inequality.\u003c/p>\n\u003cp>According to the UCLA Labor Center, as of 2019 there were at least \u003ca href=\"https://www.labor.ucla.edu/wp-content/uploads/2022/03/Lives-and-Livelihood-Report-1.pdf\">1.75 million disabled adults under 65\u003c/a> in California who needed home care.\u003c/p>\n\u003cp>I wrote about the future of care infrastructure in my memoir, \u003ci>Year of the Tiger: An Activist’s Life\u003c/i>. They are not unfeasible dreams. Change comes from wild imaginings of what is possible.\u003c/p>\n\u003cp>In the future care infrastructure will be …\u003c/p>\n\u003cp>One that treats care as a normal part of the human lifespan and not a failure or weakness to need help.\u003c/p>\n\u003cp>One led and designed by disabled people and others who need or provide care.\u003c/p>\n\u003cp>One that is free, publicly funded, and not means-tested or linked to employment.\u003c/p>\n\u003cp>One that puts a primacy on self-direction of the individual, bodily autonomy, and dignity of risk rather than a formulaic, medicalized training that dehumanizes disabled, older and chronically ill people.\u003c/p>\n\u003cp>\u003ci>[Sound of suction machine]\u003c/i>\u003c/p>\n\u003cp>And this is the sound of another essential piece of equipment, a suction machine that helps me clear my lungs of secretions that I produce almost every hour. 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.\u003c/p>\n\u003cp>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>Manifesting this dream from San Francisco, for The California Report, I’m Alice Wong.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cstrong>Ericka Cruz Guevarra: \u003c/strong>That was disability rights activist Alice Wong,for The California Report Magazine back in Dec 2022. There is a GOFUNDME set up to help continue the legacy of Alice’s work. We’ll leave you a link to that in our show notes.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\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>[ad fullwidth]\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.[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",
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"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>",
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"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>",
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"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>",
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"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 loading=\"lazy\" decoding=\"async\" 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://cdn.kqed.org/wp-content/uploads/sites/10/2022/12/Alice-Wong-in-ICU.jpg 320w, https://cdn.kqed.org/wp-content/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",
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"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 loading=\"lazy\" decoding=\"async\" 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://cdn.kqed.org/wp-content/uploads/sites/10/2022/12/Alice-Wong-in-ICU.jpg 320w, https://cdn.kqed.org/wp-content/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>",
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"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",
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"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>",
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"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>",
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"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",
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"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>",
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"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.”",
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"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>",
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"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>",
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"info": "What kind of no sabo word is Hyphenación? For us, it’s about living within a hyphenation. Like being a third-gen Mexican-American from the Texas border now living that Bay Area Chicano life. Like Xorje! Each week we bring together a couple of hyphenated Latinos to talk all about personal life choices: family, careers, relationships, belonging … everything is on the table. ",
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"info": "The Political Mind of Jerry Brown brings listeners the wisdom of the former Governor, Mayor, and presidential candidate. Scott Shafer interviewed Brown for more than 40 hours, covering the former governor's life and half-century in the political game – and Brown has some lessons he'd like to share. ",
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"marketplace": {
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"info": "Our flagship program, helmed by Kai Ryssdal, examines what the day in money delivered, through stories, conversations, newsworthy numbers and more. Updated Monday through Friday at about 3:30 p.m. PT.",
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"mindshift": {
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"info": "The MindShift podcast explores the innovations in education that are shaping how kids learn. Hosts Ki Sung and Katrina Schwartz introduce listeners to educators, researchers, parents and students who are developing effective ways to improve how kids learn. We cover topics like how fed-up administrators are developing surprising tactics to deal with classroom disruptions; how listening to podcasts are helping kids develop reading skills; the consequences of overparenting; and why interdisciplinary learning can engage students on all ends of the traditional achievement spectrum. This podcast is part of the MindShift education site, a division of KQED News. KQED is an NPR/PBS member station based in San Francisco. You can also visit the MindShift website for episodes and supplemental blog posts or tweet us \u003ca href=\"https://twitter.com/MindShiftKQED\">@MindShiftKQED\u003c/a> or visit us at \u003ca href=\"/mindshift\">MindShift.KQED.org\u003c/a>",
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"order": 12
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"info": "For decades, the process for how police police themselves has been inconsistent – if not opaque. In some states, like California, these proceedings were completely hidden. After a new police transparency law unsealed scores of internal affairs files, our reporters set out to examine these cases and the shadow world of police discipline. On Our Watch brings listeners into the rooms where officers are questioned and witnesses are interrogated to find out who this system is really protecting. Is it the officers, or the public they've sworn to serve?",
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"info": "Our weekly podcast explores how the media 'sausage' is made, casts an incisive eye on fluctuations in the marketplace of ideas, and examines threats to the freedom of information and expression in America and abroad. For one hour a week, the show tries to lift the veil from the process of \"making media,\" especially news media, because it's through that lens that we see the world and the world sees us",
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"info": "The economy explained. Imagine you could call up a friend and say, Meet me at the bar and tell me what's going on with the economy. Now imagine that's actually a fun evening.",
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"politicalbreakdown": {
"id": "politicalbreakdown",
"title": "Political Breakdown",
"tagline": "Politics from a personal perspective",
"info": "Political Breakdown is a new series that explores the political intersection of California and the nation. Each week hosts Scott Shafer and Marisa Lagos are joined with a new special guest to unpack politics -- with personality — and offer an insider’s glimpse at how politics happens.",
"airtime": "THU 6:30pm-7pm",
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"possible": {
"id": "possible",
"title": "Possible",
"info": "Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. Together in Possible, Hoffman and Finger lead enlightening discussions about building a brighter collective future. The show features interviews with visionary guests like Trevor Noah, Sam Altman and Janette Sadik-Khan. Possible paints an optimistic portrait of the world we can create through science, policy, business, art and our shared humanity. It asks: What if everything goes right for once? How can we get there? Each episode also includes a short fiction story generated by advanced AI GPT-4, serving as a thought-provoking springboard to speculate how humanity could leverage technology for good.",
"airtime": "SUN 2pm",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Possible-Podcast-Tile-360x360-1.jpg",
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},
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},
"pri-the-world": {
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"title": "PRI's The World: Latest Edition",
"info": "Each weekday, host Marco Werman and his team of producers bring you the world's most interesting stories in an hour of radio that reminds us just how small our planet really is.",
"airtime": "MON-FRI 2pm-3pm",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/The-World-Podcast-Tile-360x360-1.jpg",
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},
"radiolab": {
"id": "radiolab",
"title": "Radiolab",
"info": "A two-time Peabody Award-winner, Radiolab is an investigation told through sounds and stories, and centered around one big idea. In the Radiolab world, information sounds like music and science and culture collide. Hosted by Jad Abumrad and Robert Krulwich, the show is designed for listeners who demand skepticism, but appreciate wonder. WNYC Studios is the producer of other leading podcasts including Freakonomics Radio, Death, Sex & Money, On the Media and many more.",
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},
"reveal": {
"id": "reveal",
"title": "Reveal",
"info": "Created by The Center for Investigative Reporting and PRX, Reveal is public radios first one-hour weekly radio show and podcast dedicated to investigative reporting. Credible, fact based and without a partisan agenda, Reveal combines the power and artistry of driveway moment storytelling with data-rich reporting on critically important issues. The result is stories that inform and inspire, arming our listeners with information to right injustices, hold the powerful accountable and improve lives.Reveal is hosted by Al Letson and showcases the award-winning work of CIR and newsrooms large and small across the nation. In a radio and podcast market crowded with choices, Reveal focuses on important and often surprising stories that illuminate the world for our listeners.",
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"imageSrc": "https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/reveal300px.png",
"officialWebsiteLink": "https://www.revealnews.org/episodes/",
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"link": "/radio/program/reveal",
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"rss": "http://feeds.revealradio.org/revealpodcast"
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},
"rightnowish": {
"id": "rightnowish",
"title": "Rightnowish",
"tagline": "Art is where you find it",
"info": "Rightnowish digs into life in the Bay Area right now… ish. Journalist Pendarvis Harshaw takes us to galleries painted on the sides of liquor stores in West Oakland. We'll dance in warehouses in the Bayview, make smoothies with kids in South Berkeley, and listen to classical music in a 1984 Cutlass Supreme in Richmond. Every week, Pen talks to movers and shakers about how the Bay Area shapes what they create, and how they shape the place we call home.",
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"order": 16
},
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},
"science-friday": {
"id": "science-friday",
"title": "Science Friday",
"info": "Science Friday is a weekly science talk show, broadcast live over public radio stations nationwide. Each week, the show focuses on science topics that are in the news and tries to bring an educated, balanced discussion to bear on the scientific issues at hand. Panels of expert guests join host Ira Flatow, a veteran science journalist, to discuss science and to take questions from listeners during the call-in portion of the program.",
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