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She's formerly the host of \u003ca href=\"http://ww2.kqed.org/pop/category/the-cooler/\" rel=\"noopener noreferrer\">The Cooler\u003c/a> podcast.","avatar":"https://secure.gravatar.com/avatar/2d8d6765f186e64c798cf7f0c8088a41?s=600&d=blank&r=g","twitter":"teacupinthebay","facebook":null,"instagram":null,"linkedin":null,"sites":[{"site":"","roles":["editor"]},{"site":"arts","roles":["editor"]},{"site":"news","roles":["administrator"]},{"site":"pop","roles":["editor"]},{"site":"futureofyou","roles":["editor"]},{"site":"about","roles":["administrator"]},{"site":"mindshift","roles":["editor"]},{"site":"bayareabites","roles":["editor"]},{"site":"stateofhealth","roles":["editor"]},{"site":"science","roles":["editor"]},{"site":"food","roles":["contributor"]},{"site":"forum","roles":["editor"]},{"site":"perspectives","roles":["administrator"]}],"headData":{"title":"Carly Severn | KQED","description":"Senior Editor, Audience News ","ogImgSrc":"https://secure.gravatar.com/avatar/2d8d6765f186e64c798cf7f0c8088a41?s=600&d=blank&r=g","twImgSrc":"https://secure.gravatar.com/avatar/2d8d6765f186e64c798cf7f0c8088a41?s=600&d=blank&r=g"},"isLoading":false,"link":"/author/carlysevern"},"afont":{"type":"authors","id":"8637","meta":{"index":"authors_1591205172","id":"8637","found":true},"name":"Amanda Font","firstName":"Amanda","lastName":"Font","slug":"afont","email":"afont@kqed.org","display_author_email":false,"staff_mastheads":["news"],"title":"KQED Contributor","bio":"Amanda Font is a producer on the \u003cem>Bay Curious\u003c/em> podcast, and the host and co-producer of the series \u003cem>Audible Cosmos\u003c/em>. She previously worked as director of \u003cem>The California Report Magazine\u003c/em>. She grew up in the deserts of Southern California and moved north for the trees. Amanda earned a B.A. from the BECA program at San Francisco State, where she worked in the university's radio station.","avatar":"https://secure.gravatar.com/avatar/d9e81cf0117d5849b9cfb7ab4b1422f1?s=600&d=blank&r=g","twitter":null,"facebook":null,"instagram":null,"linkedin":null,"sites":[{"site":"arts","roles":["editor"]},{"site":"news","roles":["editor","add_users","create_users"]},{"site":"science","roles":["editor"]},{"site":"forum","roles":["administrator"]},{"site":"perspectives","roles":["administrator"]},{"site":"radio","roles":["administrator"]}],"headData":{"title":"Amanda Font | KQED","description":"KQED Contributor","ogImgSrc":"https://secure.gravatar.com/avatar/d9e81cf0117d5849b9cfb7ab4b1422f1?s=600&d=blank&r=g","twImgSrc":"https://secure.gravatar.com/avatar/d9e81cf0117d5849b9cfb7ab4b1422f1?s=600&d=blank&r=g"},"isLoading":false,"link":"/author/afont"},"amarkowitz":{"type":"authors","id":"11660","meta":{"index":"authors_1591205172","id":"11660","found":true},"name":"Ariella Markowitz","firstName":"Ariella","lastName":"Markowitz","slug":"amarkowitz","email":"amarkowitz@kqed.org","display_author_email":false,"staff_mastheads":[],"title":"KQED Contributor","bio":"Ariella is a former intern for the California Report Magazine. Before that, she helped mobilize freelance journalists with Association of Independents in Radio (AIR) and made radio features for KALW. Ariella loves investigative reporting, personal stories that interrogate power, and spicy vegan cooking.","avatar":"https://secure.gravatar.com/avatar/a49317e9a9fc1762b408b2ca90b38a13?s=600&d=blank&r=g","twitter":"ariellaudio","facebook":null,"instagram":null,"linkedin":null,"sites":[{"site":"news","roles":["subscriber"]},{"site":"forum","roles":["editor"]},{"site":"perspectives","roles":["administrator"]}],"headData":{"title":"Ariella Markowitz | KQED","description":"KQED Contributor","ogImgSrc":"https://secure.gravatar.com/avatar/a49317e9a9fc1762b408b2ca90b38a13?s=600&d=blank&r=g","twImgSrc":"https://secure.gravatar.com/avatar/a49317e9a9fc1762b408b2ca90b38a13?s=600&d=blank&r=g"},"isLoading":false,"link":"/author/amarkowitz"}},"breakingNewsReducer":{},"campaignFinanceReducer":{},"firebase":{"requesting":{},"requested":{},"timestamps":{},"data":{},"ordered":{},"auth":{"isLoaded":false,"isEmpty":true},"authError":null,"profile":{"isLoaded":false,"isEmpty":true},"listeners":{"byId":{},"allIds":[]},"isInitializing":false,"errors":[]},"navBarReducer":{"navBarId":"news","fullView":true,"showPlayer":false},"navMenuReducer":{"menus":[{"key":"menu1","items":[{"name":"News","link":"/","type":"title"},{"name":"Politics","link":"/politics"},{"name":"Science","link":"/science"},{"name":"Education","link":"/educationnews"},{"name":"Housing","link":"/housing"},{"name":"Immigration","link":"/immigration"},{"name":"Criminal Justice","link":"/criminaljustice"},{"name":"Silicon Valley","link":"/siliconvalley"},{"name":"Forum","link":"/forum"},{"name":"The California Report","link":"/californiareport"}]},{"key":"menu2","items":[{"name":"Arts & Culture","link":"/arts","type":"title"},{"name":"Critics’ Picks","link":"/thedolist"},{"name":"Cultural Commentary","link":"/artscommentary"},{"name":"Food & Drink","link":"/food"},{"name":"Bay Area Hip-Hop","link":"/bayareahiphop"},{"name":"Rebel Girls","link":"/rebelgirls"},{"name":"Arts Video","link":"/artsvideos"}]},{"key":"menu3","items":[{"name":"Podcasts","link":"/podcasts","type":"title"},{"name":"Bay Curious","link":"/podcasts/baycurious"},{"name":"Rightnowish","link":"/podcasts/rightnowish"},{"name":"The Bay","link":"/podcasts/thebay"},{"name":"On Our Watch","link":"/podcasts/onourwatch"},{"name":"Mindshift","link":"/podcasts/mindshift"},{"name":"Consider This","link":"/podcasts/considerthis"},{"name":"Political Breakdown","link":"/podcasts/politicalbreakdown"}]},{"key":"menu4","items":[{"name":"Live Radio","link":"/radio","type":"title"},{"name":"TV","link":"/tv","type":"title"},{"name":"Events","link":"/events","type":"title"},{"name":"For Educators","link":"/education","type":"title"},{"name":"Support KQED","link":"/support","type":"title"},{"name":"About","link":"/about","type":"title"},{"name":"Help Center","link":"https://kqed-helpcenter.kqed.org/s","type":"title"}]}]},"pagesReducer":{},"postsReducer":{"stream_live":{"type":"live","id":"stream_live","audioUrl":"https://streams.kqed.org/kqedradio","title":"Live Stream","excerpt":"Live Stream information currently unavailable.","link":"/radio","featImg":"","label":{"name":"KQED Live","link":"/"}},"stream_kqedNewscast":{"type":"posts","id":"stream_kqedNewscast","audioUrl":"https://www.kqed.org/.stream/anon/radio/RDnews/newscast.mp3?_=1","title":"KQED Newscast","featImg":"","label":{"name":"88.5 FM","link":"/"}},"news_11964609":{"type":"posts","id":"news_11964609","meta":{"index":"posts_1591205157","site":"news","id":"11964609","score":null,"sort":[1697414425000]},"guestAuthors":[],"slug":"families-fume-over-newsoms-veto-of-childrens-hearing-aid-bill","title":"Families Fume Over Newsom’s Veto of Children’s Hearing Aid Bill","publishDate":1697414425,"format":"standard","headTitle":"Families Fume Over Newsom’s Veto of Children’s Hearing Aid Bill | KQED","labelTerm":{"term":18481,"site":"news"},"content":"\u003cp>Two of Johanna Wonderly’s four children depend on hearing aids, and the other two will probably need them in the future. At roughly $6,000 per child, the cost adds up quickly.\u003c/p>\n\u003cp>But the Roseville family can only afford them when Wonderly’s husband, Paul, is called to active duty for the California Army National Guard, because that’s when federal coverage kicks in. The family’s standard insurance does not cover hearing aids.\u003c/p>\n\u003cp>Her second oldest daughter, Cara, was born while Paul was working at his then-private-sector job as a bartender. His insurance denied their claim for a hearing aid. A state-run program for children with disabilities or chronic medical conditions said the family made too much money to qualify for help. The Wonderlys applied for assistance through a national non-profit and crossed their fingers.\u003c/p>\n\u003cp>[pullquote size=\"medium\" align=\"right\" citation=\"Dr. Dylan Chan, director, Children’s Communication Center at UC San Francisco\"]‘It would be like being able to diagnose a child with asthma but not giving them an inhaler.’[/pullquote]“We were living paycheck-to-paycheck back then. We didn’t have savings if my husband lost his job, let alone pay for an unexpected $6,000 expense,” Johanna Wonderly said. “We were going to have to say ‘Sorry, Cara. You don’t get hearing aids.’”\u003c/p>\n\u003cp>The Legislature this year unanimously passed a measure that would have helped families like hers by \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=202320240SB635\">requiring health insurers to cover hearing aids\u003c/a> for anyone under 21. Most private health insurance in California designates children’s hearing aids as cosmetic or elective devices.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>But over the weekend \u003ca href=\"https://www.gov.ca.gov/wp-content/uploads/2023/10/SB-635-Veto.pdf\">Gov. Gavin Newsom vetoed the bill\u003c/a>, citing improvements made to an existing state program established in 2021 to help families afford hearing aids. It’s the second time Newsom has effectively blocked this legislation and pointed to the state’s Hearing Aid Coverage for Children Program as an alternative. Advocates and some legislators say that program has failed.\u003c/p>\n\u003cp>[aside postID=\"news_11963514,news_11964331,news_11963061\" label=\"Related Stories\"]In his veto message, Newsom cites concern about creating a costly precedent by adding benefits to the state’s Affordable Care Act insurance exchange, known as Covered California. A legislative analysis estimates the added cost at about $11 million.\u003c/p>\n\u003cp>Newsom also said improving access to children’s hearing aids remained a priority for his administration.\u003c/p>\n\u003cp>“We can, and we must, do better for these children and their families as we implement” the Hearing Aid Coverage for Children Program, the message said.\u003c/p>\n\u003cp>Children’s advocates say the program will never work.\u003c/p>\n\u003cp>“There’s been two years of oversight hearings on this program. It’s not working, so to double down on a failing program it’s not only harmful to children, it’s wasting, you know, millions of taxpayers dollars,” said Michelle Marciniak, co-founder of \u003ca href=\"https://letcakidshear.com/\">Let California Kids Hear\u003c/a>, a parent advocacy group that sponsored the legislation. Marciniak’s daughter lost partial hearing after a viral infection.\u003c/p>\n\u003ch2>Lifelong impact of hearing loss\u003c/h2>\n\u003cp>Research shows infants and children who cannot hear can develop permanent speech, language, and cognitive deficits. They quickly fall behind in school, suffering delayed reading comprehension and social and emotional problems. Those who get an assistive device like a \u003ca href=\"https://publications.aap.org/pediatrics/article/146/4/e20200557/79717/Kindergarten-Readiness-in-Children-Who-Are-Deaf-or?autologincheck=redirected\">hearing aid within the first six months\u003c/a> of life have much better outcomes.\u003c/p>\n\u003cp>“If you have a child that’s born with hearing loss and doesn’t get hearing aids until the age of 3 or 4, this kid is going to be delayed for the rest of their life,” said Dr. Daniela Carvalho, director of Rady Children’s Hospital-San Diego’s hearing program, who testified in support of the measure.\u003c/p>\n\u003cfigure id=\"attachment_11964611\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1.jpg\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"size-medium wp-image-11964611\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-800x533.jpg\" alt=\"A young white girl with a hearing aid and red shirt leans over a desk holding a pencil to a piece of paper.\" width=\"800\" height=\"533\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-1536x1024.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-2048x1366.jpg 2048w, https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-1920x1280.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Cassie, 9, works on her homework on Oct. 11, 2023. \u003ccite>(Jyotsana Bhamidipati/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Dr. Dylan Chan, director of the Children’s Communication Center at UC San Francisco, said the impact on a child’s life is so profound that hospitals are required by state and federal law to test every newborn for hearing problems.\u003c/p>\n\u003cp>“But identifying kids with hearing loss does no good if we don’t have the ability to provide the appropriate interventions,” Chan said. “It would be like being able to diagnose a child with asthma but not giving them an inhaler.”\u003c/p>\n\u003cp>Carvalho said several of her patients’ families were waiting for the legislation to pass to be able to afford hearing aids.\u003c/p>\n\u003cp>“They have their hands tied. I mean it literally is a choice that the family needs to make. It’s a huge financial decision,” Carvalho said.\u003c/p>\n\u003ch2>Support for hearing aid bill\u003c/h2>\n\u003cp>Marciniak, the advocate who has helped lead the fight for coverage since 2019, said lawmakers brought the bill back this year because the Hearing Aid Coverage for Children Program has been ineffective since it launched in 2021.\u003c/p>\n\u003cp>“This is definitely a broken promise,” Marciniak said. “And it’s disappointing because they haven’t been willing to come to the table to solve this with us in a meaningful way.”\u003c/p>\n\u003cp>Most states already include hearing aid coverage in their insurance exchanges. Thirty-two states require private insurance to offer some level of coverage for kids’ hearing aids, including 27 that mandate it as a benefit under the Affordable Care Act. California only offers coverage to very low-income families through public insurance like Medi-Cal or the program for kids with disabilities, setting the income cap for a family of four around $40,000.\u003c/p>\n\u003cp>The state’s coverage gap leaves 20,000 kids and young adults whose families don’t qualify for low-income assistance, according to a \u003ca href=\"https://www.chbrp.org/sites/default/files/bill-documents/SB0/Abbreviated%20Analysis%20of%20SB%20635%20Hearing%20Aids%20FINAL%20060923.pdf\">California Health Benefits Review Program analysis for the Legislature\u003c/a>. That represents nearly half of all hearing aid users between the ages of 0 and 20.\u003c/p>\n\u003cp>In 2019 a similar bill passed unanimously and was sent to Newsom. At the time, former Santa Monica Democratic Assemblymember Richard Bloom, the bill author, told \u003ca href=\"https://calmatters.org/health/2022/08/childrens-hearing-aids/\">CalMatters\u003c/a> that Newsom asked him to rescind the bill with a promise to create a budget fix.\u003c/p>\n\u003cp>That “fix” came in the form of the Hearing Aid Coverage for Children Program. The program, which received $16 million its first year, \u003ca href=\"https://calmatters.org/health/2022/08/childrens-hearing-aids/\">distributed hearing aids to 39 children\u003c/a> and has been harshly criticized by legislators demanding accountability. Last year another budget allocation \u003ca href=\"https://calmatters.org/health/2022/09/children-hearing-aids/\">expanded eligibility to about 7,000 kids\u003c/a> and doubled the budget. Currently, \u003ca href=\"https://www.dhcs.ca.gov/services/HACCP/Pages/Partners/Program-Data.aspx\">255 children\u003c/a> — roughly half of all applicants — have gotten hearing aids, according to state data.\u003c/p>\n\u003cp>Parents say they can’t find providers who participate, the application process is lengthy and confusing, and resources are unavailable for people who don’t speak English.\u003c/p>\n\u003cfigure id=\"attachment_11964612\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19.jpg\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"size-medium wp-image-11964612\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-800x533.jpg\" alt=\"Three young white girls sit against a wall with an illustration while the middle child holds a baby.\" width=\"800\" height=\"533\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-1536x1024.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-1920x1280.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19.jpg 2000w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">From left Caitlyn, Cassie, Carter and Cara in Roseville on Oct. 11, 2023. \u003ccite>(Jyotsana Bhamidipati/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Kasey Cain, a mom from Lincoln and board president of California Hands and Voices, said she spent nine months fighting red tape. She sent required paperwork to the program in a pre-addressed envelope from the state. It was returned as undeliverable.\u003c/p>\n\u003cp>“It was a nightmare. I started to receive calls that they were going to close my account because they never received the documents,” Cain said. “I don’t know why your self-addressed envelope doesn’t work.”\u003c/p>\n\u003cp>Eventually, she and her husband gave up and put the $2,500 charge on a credit card. They couldn’t wait any longer to update their 7-year-old son’s hearing aid. Later, when one of his hearing aids was replaced by a cochlear implant, insurance considered it a necessary medical device and covered it. The family was responsible for a $15 copay.\u003c/p>\n\u003cp>Newsom’s veto message said the Department of Health Care Services, which manages the hearing aid program, has developed an improvement plan that will be implemented over the next six months.\u003c/p>\n\u003cp>A representative from the Department of Health Care Services in a written statement said the department has moved its application process online and translated materials into 19 languages. Information about the program is also mailed to all parents’ whose children are identified with hearing loss at birth.\u003c/p>\n\u003ch2>California Democrats want to try again\u003c/h2>\n\u003cp>Sen. Caroline Menjivar, a Democrat from Burbank, co-authored this year’s measure with Democratic Sen. Anthony Portantino from Glendale.\u003c/p>\n\u003cp>“I’m not sure why we haven’t been able to pass it,” Menjivar said during the bill’s final floor vote. “We are behind close to 30 states that have already implemented this. Let’s be the next one.”\u003c/p>\n\u003cp>In a statement following the veto, Menjivar pledged to hold the administration accountable.\u003c/p>\n\u003cp>Wonderly, the mom of four, said it took 14 months for her eldest daughter Cassie’s hearing loss to get diagnosed. She worried that Cassie, who didn’t respond to sound and who had the limited eyesight normal for newborns, wouldn’t know who her parents were.\u003c/p>\n\u003cp>“Every night I fell asleep with my hand on my baby because I wanted her to know that she was secure, she was safe. That she knew that we were there for her,” Wonderly said.\u003c/p>\n\u003cp>Wonderly said eventually the national grant program paid for her second daughter’s hearing aids. But soon Cassie, now 9, will need an updated pair, and Wonderly’s two other children, ages 7 and 1, who also have hearing loss, will likely need hearing aids in the future.\u003c/p>\n\u003cp>The closest provider that participates in the Hearing Aid Coverage for Children Program is more than 100 miles away, Wonderly said.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>Supported by the California Health Care Foundation (CHCF), which works to ensure that people have access to the care they need, when they need it, at a price they can afford. Visit \u003ca href=\"http://www.chcf.org/\">www.chcf.org\u003c/a> to learn more.\u003c/em>\u003c/p>\n\n","blocks":[],"excerpt":"More than 30 states require insurers to provide some level of coverage for kids’ hearing aids. California isn’t one of them, and Gov. Newsom for the second time has vetoed a bill to close that gap.","status":"publish","parent":0,"modified":1697413476,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":39,"wordCount":1685},"headData":{"title":"Families Fume Over Newsom’s Veto of Children’s Hearing Aid Bill | KQED","description":"More than 30 states require insurers to provide some level of coverage for kids’ hearing aids. California isn’t one of them, and Gov. Newsom for the second time has vetoed a bill to close that gap.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"Families Fume Over Newsom’s Veto of Children’s Hearing Aid Bill","datePublished":"2023-10-16T00:00:25.000Z","dateModified":"2023-10-15T23:44:36.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"Y","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"nprByline":"Kristen Hwang","excludeFromSiteSearch":"Include","showOnAuthorArchivePages":"No","articleAge":"0","path":"/news/11964609/families-fume-over-newsoms-veto-of-childrens-hearing-aid-bill","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Two of Johanna Wonderly’s four children depend on hearing aids, and the other two will probably need them in the future. At roughly $6,000 per child, the cost adds up quickly.\u003c/p>\n\u003cp>But the Roseville family can only afford them when Wonderly’s husband, Paul, is called to active duty for the California Army National Guard, because that’s when federal coverage kicks in. The family’s standard insurance does not cover hearing aids.\u003c/p>\n\u003cp>Her second oldest daughter, Cara, was born while Paul was working at his then-private-sector job as a bartender. His insurance denied their claim for a hearing aid. A state-run program for children with disabilities or chronic medical conditions said the family made too much money to qualify for help. The Wonderlys applied for assistance through a national non-profit and crossed their fingers.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"‘It would be like being able to diagnose a child with asthma but not giving them an inhaler.’","name":"pullquote","attributes":{"named":{"size":"medium","align":"right","citation":"Dr. Dylan Chan, director, Children’s Communication Center at UC San Francisco","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>“We were living paycheck-to-paycheck back then. We didn’t have savings if my husband lost his job, let alone pay for an unexpected $6,000 expense,” Johanna Wonderly said. “We were going to have to say ‘Sorry, Cara. You don’t get hearing aids.’”\u003c/p>\n\u003cp>The Legislature this year unanimously passed a measure that would have helped families like hers by \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=202320240SB635\">requiring health insurers to cover hearing aids\u003c/a> for anyone under 21. Most private health insurance in California designates children’s hearing aids as cosmetic or elective devices.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>But over the weekend \u003ca href=\"https://www.gov.ca.gov/wp-content/uploads/2023/10/SB-635-Veto.pdf\">Gov. Gavin Newsom vetoed the bill\u003c/a>, citing improvements made to an existing state program established in 2021 to help families afford hearing aids. It’s the second time Newsom has effectively blocked this legislation and pointed to the state’s Hearing Aid Coverage for Children Program as an alternative. Advocates and some legislators say that program has failed.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"postid":"news_11963514,news_11964331,news_11963061","label":"Related Stories "},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>In his veto message, Newsom cites concern about creating a costly precedent by adding benefits to the state’s Affordable Care Act insurance exchange, known as Covered California. A legislative analysis estimates the added cost at about $11 million.\u003c/p>\n\u003cp>Newsom also said improving access to children’s hearing aids remained a priority for his administration.\u003c/p>\n\u003cp>“We can, and we must, do better for these children and their families as we implement” the Hearing Aid Coverage for Children Program, the message said.\u003c/p>\n\u003cp>Children’s advocates say the program will never work.\u003c/p>\n\u003cp>“There’s been two years of oversight hearings on this program. It’s not working, so to double down on a failing program it’s not only harmful to children, it’s wasting, you know, millions of taxpayers dollars,” said Michelle Marciniak, co-founder of \u003ca href=\"https://letcakidshear.com/\">Let California Kids Hear\u003c/a>, a parent advocacy group that sponsored the legislation. Marciniak’s daughter lost partial hearing after a viral infection.\u003c/p>\n\u003ch2>Lifelong impact of hearing loss\u003c/h2>\n\u003cp>Research shows infants and children who cannot hear can develop permanent speech, language, and cognitive deficits. They quickly fall behind in school, suffering delayed reading comprehension and social and emotional problems. Those who get an assistive device like a \u003ca href=\"https://publications.aap.org/pediatrics/article/146/4/e20200557/79717/Kindergarten-Readiness-in-Children-Who-Are-Deaf-or?autologincheck=redirected\">hearing aid within the first six months\u003c/a> of life have much better outcomes.\u003c/p>\n\u003cp>“If you have a child that’s born with hearing loss and doesn’t get hearing aids until the age of 3 or 4, this kid is going to be delayed for the rest of their life,” said Dr. Daniela Carvalho, director of Rady Children’s Hospital-San Diego’s hearing program, who testified in support of the measure.\u003c/p>\n\u003cfigure id=\"attachment_11964611\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1.jpg\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"size-medium wp-image-11964611\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-800x533.jpg\" alt=\"A young white girl with a hearing aid and red shirt leans over a desk holding a pencil to a piece of paper.\" width=\"800\" height=\"533\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-1536x1024.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-2048x1366.jpg 2048w, https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-1920x1280.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Cassie, 9, works on her homework on Oct. 11, 2023. \u003ccite>(Jyotsana Bhamidipati/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Dr. Dylan Chan, director of the Children’s Communication Center at UC San Francisco, said the impact on a child’s life is so profound that hospitals are required by state and federal law to test every newborn for hearing problems.\u003c/p>\n\u003cp>“But identifying kids with hearing loss does no good if we don’t have the ability to provide the appropriate interventions,” Chan said. “It would be like being able to diagnose a child with asthma but not giving them an inhaler.”\u003c/p>\n\u003cp>Carvalho said several of her patients’ families were waiting for the legislation to pass to be able to afford hearing aids.\u003c/p>\n\u003cp>“They have their hands tied. I mean it literally is a choice that the family needs to make. It’s a huge financial decision,” Carvalho said.\u003c/p>\n\u003ch2>Support for hearing aid bill\u003c/h2>\n\u003cp>Marciniak, the advocate who has helped lead the fight for coverage since 2019, said lawmakers brought the bill back this year because the Hearing Aid Coverage for Children Program has been ineffective since it launched in 2021.\u003c/p>\n\u003cp>“This is definitely a broken promise,” Marciniak said. “And it’s disappointing because they haven’t been willing to come to the table to solve this with us in a meaningful way.”\u003c/p>\n\u003cp>Most states already include hearing aid coverage in their insurance exchanges. Thirty-two states require private insurance to offer some level of coverage for kids’ hearing aids, including 27 that mandate it as a benefit under the Affordable Care Act. California only offers coverage to very low-income families through public insurance like Medi-Cal or the program for kids with disabilities, setting the income cap for a family of four around $40,000.\u003c/p>\n\u003cp>The state’s coverage gap leaves 20,000 kids and young adults whose families don’t qualify for low-income assistance, according to a \u003ca href=\"https://www.chbrp.org/sites/default/files/bill-documents/SB0/Abbreviated%20Analysis%20of%20SB%20635%20Hearing%20Aids%20FINAL%20060923.pdf\">California Health Benefits Review Program analysis for the Legislature\u003c/a>. That represents nearly half of all hearing aid users between the ages of 0 and 20.\u003c/p>\n\u003cp>In 2019 a similar bill passed unanimously and was sent to Newsom. At the time, former Santa Monica Democratic Assemblymember Richard Bloom, the bill author, told \u003ca href=\"https://calmatters.org/health/2022/08/childrens-hearing-aids/\">CalMatters\u003c/a> that Newsom asked him to rescind the bill with a promise to create a budget fix.\u003c/p>\n\u003cp>That “fix” came in the form of the Hearing Aid Coverage for Children Program. The program, which received $16 million its first year, \u003ca href=\"https://calmatters.org/health/2022/08/childrens-hearing-aids/\">distributed hearing aids to 39 children\u003c/a> and has been harshly criticized by legislators demanding accountability. Last year another budget allocation \u003ca href=\"https://calmatters.org/health/2022/09/children-hearing-aids/\">expanded eligibility to about 7,000 kids\u003c/a> and doubled the budget. Currently, \u003ca href=\"https://www.dhcs.ca.gov/services/HACCP/Pages/Partners/Program-Data.aspx\">255 children\u003c/a> — roughly half of all applicants — have gotten hearing aids, according to state data.\u003c/p>\n\u003cp>Parents say they can’t find providers who participate, the application process is lengthy and confusing, and resources are unavailable for people who don’t speak English.\u003c/p>\n\u003cfigure id=\"attachment_11964612\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19.jpg\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"size-medium wp-image-11964612\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-800x533.jpg\" alt=\"Three young white girls sit against a wall with an illustration while the middle child holds a baby.\" width=\"800\" height=\"533\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-1536x1024.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-1920x1280.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19.jpg 2000w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">From left Caitlyn, Cassie, Carter and Cara in Roseville on Oct. 11, 2023. \u003ccite>(Jyotsana Bhamidipati/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Kasey Cain, a mom from Lincoln and board president of California Hands and Voices, said she spent nine months fighting red tape. She sent required paperwork to the program in a pre-addressed envelope from the state. It was returned as undeliverable.\u003c/p>\n\u003cp>“It was a nightmare. I started to receive calls that they were going to close my account because they never received the documents,” Cain said. “I don’t know why your self-addressed envelope doesn’t work.”\u003c/p>\n\u003cp>Eventually, she and her husband gave up and put the $2,500 charge on a credit card. They couldn’t wait any longer to update their 7-year-old son’s hearing aid. Later, when one of his hearing aids was replaced by a cochlear implant, insurance considered it a necessary medical device and covered it. The family was responsible for a $15 copay.\u003c/p>\n\u003cp>Newsom’s veto message said the Department of Health Care Services, which manages the hearing aid program, has developed an improvement plan that will be implemented over the next six months.\u003c/p>\n\u003cp>A representative from the Department of Health Care Services in a written statement said the department has moved its application process online and translated materials into 19 languages. Information about the program is also mailed to all parents’ whose children are identified with hearing loss at birth.\u003c/p>\n\u003ch2>California Democrats want to try again\u003c/h2>\n\u003cp>Sen. Caroline Menjivar, a Democrat from Burbank, co-authored this year’s measure with Democratic Sen. Anthony Portantino from Glendale.\u003c/p>\n\u003cp>“I’m not sure why we haven’t been able to pass it,” Menjivar said during the bill’s final floor vote. “We are behind close to 30 states that have already implemented this. Let’s be the next one.”\u003c/p>\n\u003cp>In a statement following the veto, Menjivar pledged to hold the administration accountable.\u003c/p>\n\u003cp>Wonderly, the mom of four, said it took 14 months for her eldest daughter Cassie’s hearing loss to get diagnosed. She worried that Cassie, who didn’t respond to sound and who had the limited eyesight normal for newborns, wouldn’t know who her parents were.\u003c/p>\n\u003cp>“Every night I fell asleep with my hand on my baby because I wanted her to know that she was secure, she was safe. That she knew that we were there for her,” Wonderly said.\u003c/p>\n\u003cp>Wonderly said eventually the national grant program paid for her second daughter’s hearing aids. But soon Cassie, now 9, will need an updated pair, and Wonderly’s two other children, ages 7 and 1, who also have hearing loss, will likely need hearing aids in the future.\u003c/p>\n\u003cp>The closest provider that participates in the Hearing Aid Coverage for Children Program is more than 100 miles away, Wonderly said.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>Supported by the California Health Care Foundation (CHCF), which works to ensure that people have access to the care they need, when they need it, at a price they can afford. Visit \u003ca href=\"http://www.chcf.org/\">www.chcf.org\u003c/a> to learn more.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11964609/families-fume-over-newsoms-veto-of-childrens-hearing-aid-bill","authors":["byline_news_11964609"],"categories":["news_8"],"tags":["news_21845","news_27626","news_25015","news_33341","news_33340","news_2605"],"affiliates":["news_18481"],"featImg":"news_11964610","label":"news_18481"},"news_11868661":{"type":"posts","id":"news_11868661","meta":{"index":"posts_1591205157","site":"news","id":"11868661","score":null,"sort":[1617921576000]},"guestAuthors":[],"slug":"faced-with-inaccessible-systems-sfs-lighthouse-launches-vaccine-pop-up-for-disability-community","title":"Faced With Inaccessible Systems, SF's LightHouse Launches Vaccine Pop-Up for Disability Community","publishDate":1617921576,"format":"audio","headTitle":"KQED News","labelTerm":{"site":"news"},"content":"\u003cp>Finding a COVID-19 vaccine appointment near you in the Bay Area has been a challenging road for months now. And many disabled people are finding that both physical and online inaccessibility is putting up even more roadblocks between them and the vaccine.\u003c/p>\n\u003cp>As part of a community-led effort to connect disabled Californians with vaccine appointments, San Francisco nonprofit \u003ca href=\"https://lighthouse-sf.org/mc-events/lighthouse-hq-covid-19-vaccination-site-4/?mc_id=10396\">LightHouse for the Blind and Visually Impaired is now providing fully accessible pop-up vaccination clinics\u003c/a> at their San Francisco headquarters each Friday until May 7.\u003c/p>\n\u003cp>These weekly clinics offer the COVID-19 vaccine by appointment to all members of the blind, low vision, extended disability community and their caregivers.\u003c/p>\n\u003cp>\"We're super happy that the city of San Francisco worked with us so that our site is available to all people with disabilities in the Bay Area and their assistants,\" LightHouse CEO Bryan Bashin told KQED's Brian Watt this week. Bashin said LightHouse is offering around 200 vaccine doses at each of these Friday pop-up clinics.\u003c/p>\n\u003cp>[aside postID=\"news_11855623\" hero=\"https://ww2.kqed.org/app/uploads/sites/10/2021/02/Vaccination-Prep-1020x680.jpg\"]LightHouse's Friday vaccination clinic at 1155 Market St. in San Francisco is open by appointment only. To make an appointment, call 628-652-2700. You'll speak to a member of San Francisco's city vaccination call center who will ask for some basic personal information and your health care provider details, and give you more accessibility details about the appointment process and what to expect at the pop-up clinic.\u003c/p>\n\u003cp>LightHouse's appointment line is staffed from 8:30 a.m. to 5 p.m. Monday to Friday. If you need to call outside those hours, you can leave a voicemail message to request a callback. This line is available in both Spanish and English, and LightHouse says that interpreters for other languages can be made available when you leave a voicemail requesting a callback. \u003ca href=\"https://lighthouse-sf.org/mc-events/lighthouse-hq-covid-19-vaccination-site-4/?mc_id=10396\">More information about LightHouse's vaccination clinic\u003c/a>.\u003c/p>\n\u003cp>Remember: When it's your time to get vaccinated, your COVID-19 vaccine will be free. You do not need health insurance to be vaccinated. You also will not be asked for proof of citizenship.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003ch3>'A Moving Target'\u003c/h3>\n\u003cp>The state's vaccination rollout has not offered the full accessibility that many disabled Californians need. CEO Bashin said that LightHouse was spurred to offer these weekly pop-up vaccinations by the challenges many in the disability community were reporting around using the California Department of Public Health's vaccine appointment tool, \u003ca href=\"https://myturn.ca.gov/\">My Turn\u003c/a>.\u003c/p>\n\u003cp>[aside postID=\"science_1972824\"]My Turn, said Bashin, \"has been a moving target\" — due a combination of scarce appointment availability and the inaccessible elements of the state's site itself.\u003c/p>\n\u003cp>On his own experience using My Turn to find a vaccine, Bashin said that he \"personally faced situations where I was notified that there were vaccines, and then watched as I struggled with the app and the website to try to get an appointment — only to find that those appointments disappeared because of the inaccessibility of some of those first websites.\"\u003c/p>\n\u003cp>\"Things like, 'Take a picture of the front and back of your health insurance card,' \" noted Bashin. \"A beautiful exercise to do if you can't see.\"\u003c/p>\n\u003cp>Some of these kinds of elements have been improved, said Bashin, calling My Turn \"now very much better than what it had been.\"\u003c/p>\n\u003cp>Bashin said there's also the issue of physical vaccination sites themselves. \"Frankly, some of the major vaccination sites like the [Oakland] Coliseum or [San Francisco's] Moscone Center are giant million-square-feet behemoths. Great if you can drive in,\" said Bashin.\u003c/p>\n\u003cp>\"But if you're a person who doesn't drive, like the 40,000 blind and visually impaired people in the Bay Area, or people with other disabilities, perhaps we want to offer a more convenient way for people to get in, get out, and get their vaccine accessibly.\"\u003c/p>\n\u003cp>The city of San Francisco is offering a call center for people with disabilities who are unable to easily access the internet or schedule a vaccine appointment through their provider: call them at (628) 652-2700.\u003c/p>\n\u003cp>If you're experiencing issues using My Turn, you can call the California COVID-19 Hotline at 1-833-422-4255 (Monday-Friday, 8 a.m.-8 p.m., Saturday and Sunday 8 a.m.-5 p.m PT) and sign up over the phone. Both English-speaking and Spanish-speaking operators are available. Callers needing information in other languages will be connected to translation service that offers 254 other languages.\u003c/p>\n\u003ch3>A Stop-Start Vaccine Rollout for Disabled People\u003c/h3>\n\u003cp>As of March 15, the state opened COVID-19 vaccination up to people ages 16-64 who have certain disabilities or health conditions that put them at \"the very highest risk\" from the coronavirus. \u003ca href=\"https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/vaccine-high-risk-factsheet.aspx\">See the list of eligible disabilities and conditions\u003c/a>.\u003c/p>\n\u003cp>Some counties and health providers have chosen to expand on the state's list. \u003ca href=\"https://sf.gov/information/other-conditions-eligible-covid-19-vaccine-sf\">San Francisco has a longer list of eligible conditions and disabilities\u003c/a>, and Kaiser Permanente has also included \u003ca href=\"https://mydoctor.kaiserpermanente.org/covid-19/vaccine-availability-eligibility\">more health conditions and disabilities in its own list\u003c/a>.\u003c/p>\n\u003cp>[aside postID=\"news_11866883\"]If you are eligible for vaccination because of your disability or your health condition, the state says that \u003ca href=\"https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/vaccine-high-risk-factsheet.aspx\">you won't be asked to provide any verification documentation\u003c/a> of the diagnosis or type of disability you have, to protect patient confidentiality. Instead, you'll be asked to sign a self-attestation that you meet \u003ca href=\"https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/Provider-Bulletin-2-12-21.aspx\">the criteria laid out by the state\u003c/a>.\u003c/p>\n\u003cp>The extension of vaccine eligibility to disabled people and those with health conditions was a hard-fought battle.\u003c/p>\n\u003cp>In late January, California announced that after vaccinating people in Phase 1A, \u003ca href=\"https://www.kqed.org/coronavirusliveupdates/news/11857077/california-to-shift-to-age-based-vaccine-eligibility-system-eliminating-job-categories\">the state would shift away from the phase-based system it had planned\u003c/a> in favor of a system that would be primarily age based.\u003c/p>\n\u003cp>[aside postID=\"news_11857538\"]Those now-obsolete subsequent phases included people ages 16 to 49 with underlying health conditions or disabilities, as well as many essential workers. The decision swiftly led to an \u003ca href=\"https://www.kqed.org/news/11857538/so-angry-so-sad-so-scared-disability-advocates-say-states-new-vaccine-rollout-plan-leaves-them-behind\">outcry from disability advocates\u003c/a> – among them writer and activist Alice Wong, who sparked the Twitter hashtag \u003ca href=\"https://twitter.com/search?q=%23HighRiskCA&src=typed_query\">#HighRiskCA\u003c/a> and encouraged other disabled people to share their fears about the state's move.\u003c/p>\n\u003cp>\"I don't understand the science and logic behind this decision, and I don't understand why people do not see us and value us,\" Wong said at the time.\u003c/p>\n\u003cp>Wong was one of those advocates who eventually \u003ca href=\"https://www.kqed.org/news/11866883/the-long-fight-against-ableism-and-ageism-throughout-the-covid-19-pandemic\">pushed the state to reverse its decision\u003c/a>, and people ages 16-64 with \u003ca href=\"https://www.kqed.org/news/11855623/where-can-i-get-a-covid-19-vaccine-in-the-bay-area-your-questions-answered#health\">certain disabilities or health conditions were deemed eligible once more for vaccination\u003c/a> as of March 15.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n","blocks":[],"excerpt":"LightHouse for the Blind and Visually Impaired is now providing weekly pop-up vaccination clinics at their San Francisco headquarters.","status":"publish","parent":0,"modified":1617925742,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":26,"wordCount":1116},"headData":{"title":"Faced With Inaccessible Systems, SF's LightHouse Launches Vaccine Pop-Up for Disability Community | KQED","description":"LightHouse for the Blind and Visually Impaired is now providing weekly pop-up vaccination clinics at their San Francisco headquarters.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"Faced With Inaccessible Systems, SF's LightHouse Launches Vaccine Pop-Up for Disability Community","datePublished":"2021-04-08T22:39:36.000Z","dateModified":"2021-04-08T23:49:02.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"Y","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"disqusIdentifier":"11868661 https://ww2.kqed.org/news/?p=11868661","disqusUrl":"https://ww2.kqed.org/news/2021/04/08/faced-with-inaccessible-systems-sfs-lighthouse-launches-vaccine-pop-up-for-disability-community/","disqusTitle":"Faced With Inaccessible Systems, SF's LightHouse Launches Vaccine Pop-Up for Disability Community","audioUrl":"https://traffic.omny.fm/d/clips/0af137ef-751e-4b19-a055-aaef00d2d578/ffca7e9f-6831-41c5-bcaf-aaef00f5a073/9a0154c1-936b-45ea-804d-ad0401232295/audio.mp3","path":"/news/11868661/faced-with-inaccessible-systems-sfs-lighthouse-launches-vaccine-pop-up-for-disability-community","audioDuration":176000,"audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Finding a COVID-19 vaccine appointment near you in the Bay Area has been a challenging road for months now. And many disabled people are finding that both physical and online inaccessibility is putting up even more roadblocks between them and the vaccine.\u003c/p>\n\u003cp>As part of a community-led effort to connect disabled Californians with vaccine appointments, San Francisco nonprofit \u003ca href=\"https://lighthouse-sf.org/mc-events/lighthouse-hq-covid-19-vaccination-site-4/?mc_id=10396\">LightHouse for the Blind and Visually Impaired is now providing fully accessible pop-up vaccination clinics\u003c/a> at their San Francisco headquarters each Friday until May 7.\u003c/p>\n\u003cp>These weekly clinics offer the COVID-19 vaccine by appointment to all members of the blind, low vision, extended disability community and their caregivers.\u003c/p>\n\u003cp>\"We're super happy that the city of San Francisco worked with us so that our site is available to all people with disabilities in the Bay Area and their assistants,\" LightHouse CEO Bryan Bashin told KQED's Brian Watt this week. Bashin said LightHouse is offering around 200 vaccine doses at each of these Friday pop-up clinics.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"postid":"news_11855623","hero":"https://ww2.kqed.org/app/uploads/sites/10/2021/02/Vaccination-Prep-1020x680.jpg","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>LightHouse's Friday vaccination clinic at 1155 Market St. in San Francisco is open by appointment only. To make an appointment, call 628-652-2700. You'll speak to a member of San Francisco's city vaccination call center who will ask for some basic personal information and your health care provider details, and give you more accessibility details about the appointment process and what to expect at the pop-up clinic.\u003c/p>\n\u003cp>LightHouse's appointment line is staffed from 8:30 a.m. to 5 p.m. Monday to Friday. If you need to call outside those hours, you can leave a voicemail message to request a callback. This line is available in both Spanish and English, and LightHouse says that interpreters for other languages can be made available when you leave a voicemail requesting a callback. \u003ca href=\"https://lighthouse-sf.org/mc-events/lighthouse-hq-covid-19-vaccination-site-4/?mc_id=10396\">More information about LightHouse's vaccination clinic\u003c/a>.\u003c/p>\n\u003cp>Remember: When it's your time to get vaccinated, your COVID-19 vaccine will be free. You do not need health insurance to be vaccinated. You also will not be asked for proof of citizenship.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003ch3>'A Moving Target'\u003c/h3>\n\u003cp>The state's vaccination rollout has not offered the full accessibility that many disabled Californians need. CEO Bashin said that LightHouse was spurred to offer these weekly pop-up vaccinations by the challenges many in the disability community were reporting around using the California Department of Public Health's vaccine appointment tool, \u003ca href=\"https://myturn.ca.gov/\">My Turn\u003c/a>.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"postid":"science_1972824","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>My Turn, said Bashin, \"has been a moving target\" — due a combination of scarce appointment availability and the inaccessible elements of the state's site itself.\u003c/p>\n\u003cp>On his own experience using My Turn to find a vaccine, Bashin said that he \"personally faced situations where I was notified that there were vaccines, and then watched as I struggled with the app and the website to try to get an appointment — only to find that those appointments disappeared because of the inaccessibility of some of those first websites.\"\u003c/p>\n\u003cp>\"Things like, 'Take a picture of the front and back of your health insurance card,' \" noted Bashin. \"A beautiful exercise to do if you can't see.\"\u003c/p>\n\u003cp>Some of these kinds of elements have been improved, said Bashin, calling My Turn \"now very much better than what it had been.\"\u003c/p>\n\u003cp>Bashin said there's also the issue of physical vaccination sites themselves. \"Frankly, some of the major vaccination sites like the [Oakland] Coliseum or [San Francisco's] Moscone Center are giant million-square-feet behemoths. Great if you can drive in,\" said Bashin.\u003c/p>\n\u003cp>\"But if you're a person who doesn't drive, like the 40,000 blind and visually impaired people in the Bay Area, or people with other disabilities, perhaps we want to offer a more convenient way for people to get in, get out, and get their vaccine accessibly.\"\u003c/p>\n\u003cp>The city of San Francisco is offering a call center for people with disabilities who are unable to easily access the internet or schedule a vaccine appointment through their provider: call them at (628) 652-2700.\u003c/p>\n\u003cp>If you're experiencing issues using My Turn, you can call the California COVID-19 Hotline at 1-833-422-4255 (Monday-Friday, 8 a.m.-8 p.m., Saturday and Sunday 8 a.m.-5 p.m PT) and sign up over the phone. Both English-speaking and Spanish-speaking operators are available. Callers needing information in other languages will be connected to translation service that offers 254 other languages.\u003c/p>\n\u003ch3>A Stop-Start Vaccine Rollout for Disabled People\u003c/h3>\n\u003cp>As of March 15, the state opened COVID-19 vaccination up to people ages 16-64 who have certain disabilities or health conditions that put them at \"the very highest risk\" from the coronavirus. \u003ca href=\"https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/vaccine-high-risk-factsheet.aspx\">See the list of eligible disabilities and conditions\u003c/a>.\u003c/p>\n\u003cp>Some counties and health providers have chosen to expand on the state's list. \u003ca href=\"https://sf.gov/information/other-conditions-eligible-covid-19-vaccine-sf\">San Francisco has a longer list of eligible conditions and disabilities\u003c/a>, and Kaiser Permanente has also included \u003ca href=\"https://mydoctor.kaiserpermanente.org/covid-19/vaccine-availability-eligibility\">more health conditions and disabilities in its own list\u003c/a>.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"postid":"news_11866883","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>If you are eligible for vaccination because of your disability or your health condition, the state says that \u003ca href=\"https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/vaccine-high-risk-factsheet.aspx\">you won't be asked to provide any verification documentation\u003c/a> of the diagnosis or type of disability you have, to protect patient confidentiality. Instead, you'll be asked to sign a self-attestation that you meet \u003ca href=\"https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/Provider-Bulletin-2-12-21.aspx\">the criteria laid out by the state\u003c/a>.\u003c/p>\n\u003cp>The extension of vaccine eligibility to disabled people and those with health conditions was a hard-fought battle.\u003c/p>\n\u003cp>In late January, California announced that after vaccinating people in Phase 1A, \u003ca href=\"https://www.kqed.org/coronavirusliveupdates/news/11857077/california-to-shift-to-age-based-vaccine-eligibility-system-eliminating-job-categories\">the state would shift away from the phase-based system it had planned\u003c/a> in favor of a system that would be primarily age based.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"postid":"news_11857538","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>Those now-obsolete subsequent phases included people ages 16 to 49 with underlying health conditions or disabilities, as well as many essential workers. The decision swiftly led to an \u003ca href=\"https://www.kqed.org/news/11857538/so-angry-so-sad-so-scared-disability-advocates-say-states-new-vaccine-rollout-plan-leaves-them-behind\">outcry from disability advocates\u003c/a> – among them writer and activist Alice Wong, who sparked the Twitter hashtag \u003ca href=\"https://twitter.com/search?q=%23HighRiskCA&src=typed_query\">#HighRiskCA\u003c/a> and encouraged other disabled people to share their fears about the state's move.\u003c/p>\n\u003cp>\"I don't understand the science and logic behind this decision, and I don't understand why people do not see us and value us,\" Wong said at the time.\u003c/p>\n\u003cp>Wong was one of those advocates who eventually \u003ca href=\"https://www.kqed.org/news/11866883/the-long-fight-against-ableism-and-ageism-throughout-the-covid-19-pandemic\">pushed the state to reverse its decision\u003c/a>, and people ages 16-64 with \u003ca href=\"https://www.kqed.org/news/11855623/where-can-i-get-a-covid-19-vaccine-in-the-bay-area-your-questions-answered#health\">certain disabilities or health conditions were deemed eligible once more for vaccination\u003c/a> as of March 15.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11868661/faced-with-inaccessible-systems-sfs-lighthouse-launches-vaccine-pop-up-for-disability-community","authors":["3243"],"categories":["news_457","news_8"],"tags":["news_27350","news_28801","news_27504","news_21845","news_29228","news_20691","news_38","news_981"],"featImg":"news_11868708","label":"news"},"news_11863930":{"type":"posts","id":"news_11863930","meta":{"index":"posts_1591205157","site":"news","id":"11863930","score":null,"sort":[1615325331000]},"guestAuthors":[],"slug":"people-with-high-risk-disabilities-feel-left-out-by-californias-vaccine-system","title":"People With High-Risk Disabilities Feel Left Out by California's Vaccine System","publishDate":1615325331,"format":"standard","headTitle":"KQED News","labelTerm":{},"content":"\u003cp>On a blustery day in Los Angeles, Mimi Newman unlocks her front door to take the dogs outside. For Newman, \"outside\" is a relative term — she's been in strict quarantine since March 6, 2020. She's only gone past her front gate three times.\u003c/p>\n\u003cp>Newman is severely immunocompromised. To a small degree, her medical history prepared her for the pandemic.\u003c/p>\n\u003cp>\"I have had periods of my life — years and years and years — where I had to be either in bed the whole time, or just not able to leave the house 'cause I had been so sick,\" she says. \"But it's so different when anyone that could walk through the door could essentially kill you with their breath.\"\u003c/p>\n\u003cp>So for the past year she's been nannying a 9-year-old over Zoom, supervising cake baking and attending Morning Sing from bed. \"We have done sewing. We have done making paper flowers out of tissue paper. You name it, I've crafted it,\" she says. \"I even bedazzle.\"\u003c/p>\n\u003cp>Californians with \u003ca href=\"https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/Provider-Bulletin-2-12-21.aspx\">high-risk disabilities\u003c/a>, such as heart failure and chronic pulmonary disease, had been eligible for the COVID-19 vaccine in the state's tier 1C. But in January, after opening tiers 1A and 1B, California joined states like Connecticut and Indiana in pivoting from a risk-based strategy to an age-based one.\u003c/p>\n\u003cp>After an\u003ca href=\"https://www.kqed.org/news/11857538/so-angry-so-sad-so-scared-disability-advocates-say-states-new-vaccine-rollout-plan-leaves-them-behind\"> outcry from disability advocates\u003c/a>, in February California then announced that people ages 16-64 who are disabled or have health conditions that put them at high risk from the coronavirus \u003ca href=\"https://www.kqed.org/coronavirusliveupdates/news/11860281/california-to-expand-vaccine-eligibility-to-people-with-disabilities-high-risk-health-conditions\">\u003cem>would\u003c/em> be eligible for slightly earlier vaccinations\u003c/a> after all — but not until March 15.\u003c/p>\n\u003cp>Which meant Newman, who's 31, would still have to wait.\u003c/p>\n\u003cp>[aside postID=news_11857538 hero='https://ww2.kqed.org/app/uploads/sites/10/2021/02/RS43258_HEADSHOT-3-aw-qut-1020x1020-2.jpg']Many states are rolling out the vaccine in tiers that prioritize people using a variety of factors, including age, occupation and risk factors such as preexisting conditions.\u003c/p>\n\u003cp>The state's plan has led to some odd loopholes. Landscapers and massage therapists became eligible for vaccines in early February, as did Newman's wife Megan, her primary caretaker.\u003c/p>\n\u003cp>\"It seems particularly fitting that they decided to categorize my wife as more eligible for vaccination than me,\" says Newman. \"It's literally saying, 'We are going to keep her safe instead of you.' \"\u003c/p>\n\u003cp>Age-based vaccine systems are the norm: Think of the shots needed for school. But things change in a pandemic, when everyone needs a shot at the same time. There is widespread agreement that health care workers should take priority. But almost immediately after that, things get messy.\u003c/p>\n\u003cp>\"As we go down the ladder, it gets more and more complicated,\" says bioethicist Jen James. \"How do we weigh teachers against people with disabilities or chronic illnesses? Those questions of individual value, of who quote unquote deserves a vaccine more or needs a vaccine more, are directly butting heads with: Who do we need to be vaccinated for the good of our society?\"\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>There's also the basic difficulty of getting shots into arms.\u003c/p>\n\u003cp>\"The infrastructure limitations are huge in California,\" says infectious disease specialist Dr. Peter Chin-Hong. \"California is not only the most populous state, but a huge landmass with a lot of rural areas.\"\u003c/p>\n\u003cp>With that in mind, an age-based system has two clear advantages. \"Every decade above the age of 50 results in an increase in mortality from COVID-19,\" says Chin-Hong. \"The other aspect is one of logistics: It's easily possible to adjudicate what somebody's age is.\"\u003c/p>\n\u003cp>[aside label='Coronavirus Coverage' tag='coronavirus']Dr. Louise Aronson is a member of the California Department of Public Health's Priority Population Workgroup, which helped set the vaccine tiers. \"We looked at socio-demographic groups, we looked at illness categories, we looked at combinations of illness,\" she says. \"If you look at people who have three or more chronic conditions, that is another thing where the risk for serious illness and death goes way, way up.\"\u003c/p>\n\u003cp>But sometimes that risk is obscured by a lack of data.\u003c/p>\n\u003cp>\"There are rare conditions that probably put people at really high risk, but they're rare, so they don't get quantitated,\" says Aronson. And in a state as large as California, going by the numbers is both necessary for an effective rollout and bound to exclude people like Mimi Newman.\u003c/p>\n\u003cp>So much of the human toll of this pandemic is hidden away from view, from solitary deaths in ICUs to people with high-risk disabilities in tight lockdown.\u003c/p>\n\u003cp>\"Seeing people sitting in Beverly Hills, eating outside with no masks on: It's those kind of tiny pickaxes that eat away at me,\" says Newman. \"It hurts to know that there are the people who think, 'Oh, just this once. Just this once isn't bad.' I don't know any other world than the one that is people who are staying inside and dying.\"\u003c/p>\n\u003cp>On March 15, Newman will join up to 6 million other Californians newly eligible for the COVID-19 vaccine. In the meantime, she's entering the second year of the pandemic exactly where she started the first: inside, waiting.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2021 NPR. To see more, visit \u003ca href=\"https://www.npr.org\">NPR.org\u003c/a>.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=People+With+High-Risk+Disabilities+Feel+Left+Out+By+California%27s+Vaccine+System&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\u003cp>\u003c/p>\n","blocks":[],"excerpt":"California moved from a risk-based to an age-based system for the COVID-19 vaccine in January. People with disabilities say that pivot cast them aside and they should have been prioritized.","status":"publish","parent":0,"modified":1615332912,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":23,"wordCount":886},"headData":{"title":"People With High-Risk Disabilities Feel Left Out by California's Vaccine System | KQED","description":"California moved from a risk-based to an age-based system for the COVID-19 vaccine in January. People with disabilities say that pivot cast them aside and they should have been prioritized.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"People With High-Risk Disabilities Feel Left Out by California's Vaccine System","datePublished":"2021-03-09T21:28:51.000Z","dateModified":"2021-03-09T23:35:12.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"Y","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"disqusIdentifier":"11863930 https://ww2.kqed.org/news/?p=11863930","disqusUrl":"https://ww2.kqed.org/news/2021/03/09/people-with-high-risk-disabilities-feel-left-out-by-californias-vaccine-system/","disqusTitle":"People With High-Risk Disabilities Feel Left Out by California's Vaccine System","source":"NPR","sourceUrl":"https://www.npr.org/","nprByline":"Adwoa Gyimah-Brempong ","nprImageAgency":"Courtesy of Megan Newman","nprStoryId":"975216805","nprApiLink":"http://api.npr.org/query?id=975216805&apiKey=MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004","nprHtmlLink":"https://www.npr.org/2021/03/09/975216805/people-with-high-risk-disabilities-feel-left-out-by-californias-vaccine-system?ft=nprml&f=975216805","nprRetrievedStory":"1","nprPubDate":"Tue, 09 Mar 2021 14:59:00 -0500","nprStoryDate":"Tue, 09 Mar 2021 14:59:02 -0500","nprLastModifiedDate":"Tue, 09 Mar 2021 14:59:32 -0500","path":"/news/11863930/people-with-high-risk-disabilities-feel-left-out-by-californias-vaccine-system","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>On a blustery day in Los Angeles, Mimi Newman unlocks her front door to take the dogs outside. For Newman, \"outside\" is a relative term — she's been in strict quarantine since March 6, 2020. She's only gone past her front gate three times.\u003c/p>\n\u003cp>Newman is severely immunocompromised. To a small degree, her medical history prepared her for the pandemic.\u003c/p>\n\u003cp>\"I have had periods of my life — years and years and years — where I had to be either in bed the whole time, or just not able to leave the house 'cause I had been so sick,\" she says. \"But it's so different when anyone that could walk through the door could essentially kill you with their breath.\"\u003c/p>\n\u003cp>So for the past year she's been nannying a 9-year-old over Zoom, supervising cake baking and attending Morning Sing from bed. \"We have done sewing. We have done making paper flowers out of tissue paper. You name it, I've crafted it,\" she says. \"I even bedazzle.\"\u003c/p>\n\u003cp>Californians with \u003ca href=\"https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/Provider-Bulletin-2-12-21.aspx\">high-risk disabilities\u003c/a>, such as heart failure and chronic pulmonary disease, had been eligible for the COVID-19 vaccine in the state's tier 1C. But in January, after opening tiers 1A and 1B, California joined states like Connecticut and Indiana in pivoting from a risk-based strategy to an age-based one.\u003c/p>\n\u003cp>After an\u003ca href=\"https://www.kqed.org/news/11857538/so-angry-so-sad-so-scared-disability-advocates-say-states-new-vaccine-rollout-plan-leaves-them-behind\"> outcry from disability advocates\u003c/a>, in February California then announced that people ages 16-64 who are disabled or have health conditions that put them at high risk from the coronavirus \u003ca href=\"https://www.kqed.org/coronavirusliveupdates/news/11860281/california-to-expand-vaccine-eligibility-to-people-with-disabilities-high-risk-health-conditions\">\u003cem>would\u003c/em> be eligible for slightly earlier vaccinations\u003c/a> after all — but not until March 15.\u003c/p>\n\u003cp>Which meant Newman, who's 31, would still have to wait.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"postid":"news_11857538","hero":"https://ww2.kqed.org/app/uploads/sites/10/2021/02/RS43258_HEADSHOT-3-aw-qut-1020x1020-2.jpg","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>Many states are rolling out the vaccine in tiers that prioritize people using a variety of factors, including age, occupation and risk factors such as preexisting conditions.\u003c/p>\n\u003cp>The state's plan has led to some odd loopholes. Landscapers and massage therapists became eligible for vaccines in early February, as did Newman's wife Megan, her primary caretaker.\u003c/p>\n\u003cp>\"It seems particularly fitting that they decided to categorize my wife as more eligible for vaccination than me,\" says Newman. \"It's literally saying, 'We are going to keep her safe instead of you.' \"\u003c/p>\n\u003cp>Age-based vaccine systems are the norm: Think of the shots needed for school. But things change in a pandemic, when everyone needs a shot at the same time. There is widespread agreement that health care workers should take priority. But almost immediately after that, things get messy.\u003c/p>\n\u003cp>\"As we go down the ladder, it gets more and more complicated,\" says bioethicist Jen James. \"How do we weigh teachers against people with disabilities or chronic illnesses? Those questions of individual value, of who quote unquote deserves a vaccine more or needs a vaccine more, are directly butting heads with: Who do we need to be vaccinated for the good of our society?\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>There's also the basic difficulty of getting shots into arms.\u003c/p>\n\u003cp>\"The infrastructure limitations are huge in California,\" says infectious disease specialist Dr. Peter Chin-Hong. \"California is not only the most populous state, but a huge landmass with a lot of rural areas.\"\u003c/p>\n\u003cp>With that in mind, an age-based system has two clear advantages. \"Every decade above the age of 50 results in an increase in mortality from COVID-19,\" says Chin-Hong. \"The other aspect is one of logistics: It's easily possible to adjudicate what somebody's age is.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"label":"Coronavirus Coverage ","tag":"coronavirus"},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>Dr. Louise Aronson is a member of the California Department of Public Health's Priority Population Workgroup, which helped set the vaccine tiers. \"We looked at socio-demographic groups, we looked at illness categories, we looked at combinations of illness,\" she says. \"If you look at people who have three or more chronic conditions, that is another thing where the risk for serious illness and death goes way, way up.\"\u003c/p>\n\u003cp>But sometimes that risk is obscured by a lack of data.\u003c/p>\n\u003cp>\"There are rare conditions that probably put people at really high risk, but they're rare, so they don't get quantitated,\" says Aronson. And in a state as large as California, going by the numbers is both necessary for an effective rollout and bound to exclude people like Mimi Newman.\u003c/p>\n\u003cp>So much of the human toll of this pandemic is hidden away from view, from solitary deaths in ICUs to people with high-risk disabilities in tight lockdown.\u003c/p>\n\u003cp>\"Seeing people sitting in Beverly Hills, eating outside with no masks on: It's those kind of tiny pickaxes that eat away at me,\" says Newman. \"It hurts to know that there are the people who think, 'Oh, just this once. Just this once isn't bad.' I don't know any other world than the one that is people who are staying inside and dying.\"\u003c/p>\n\u003cp>On March 15, Newman will join up to 6 million other Californians newly eligible for the COVID-19 vaccine. In the meantime, she's entering the second year of the pandemic exactly where she started the first: inside, waiting.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2021 NPR. To see more, visit \u003ca href=\"https://www.npr.org\">NPR.org\u003c/a>.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=People+With+High-Risk+Disabilities+Feel+Left+Out+By+California%27s+Vaccine+System&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\u003cp>\u003c/p>\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11863930/people-with-high-risk-disabilities-feel-left-out-by-californias-vaccine-system","authors":["byline_news_11863930"],"categories":["news_457","news_8"],"tags":["news_18538","news_27350","news_27504","news_21845","news_29228","news_25262","news_29103"],"featImg":"news_11863931","label":"source_news_11863930"},"news_11839059":{"type":"posts","id":"news_11839059","meta":{"index":"posts_1591205157","site":"news","id":"11839059","score":null,"sort":[1601139650000]},"guestAuthors":[],"slug":"music-was-our-language-grammy-award-winning-producer-turns-the-mic-on-his-sister","title":"'Music Was Our Language': Grammy Award-Winning Producer Turns the Mic on His Sister","publishDate":1601139650,"format":"audio","headTitle":"The California Report Magazine | KQED News","labelTerm":{"term":26731,"site":"news"},"content":"\u003cp>Musician Ian Brennan was born in Oakland and made a name for himself performing in live shows at the \u003ca href=\"http://www.mtv.com/news/350127/barbara-manning-joins-colorful-mix-on-laundromat-cd/\">Brainwash Laundromat in ‘90s San Francisco\u003c/a>. He went on to become a producer, working with artists like Lucinda Williams and Ramblin’ Jack Elliot.\u003c/p>\n\u003cp>But Brennan is best known for his field recordings. Along with his wife, photographer and filmmaker Marilena Delli, Brennan has recorded musicians around the world, like the \u003ca href=\"https://www.npr.org/sections/world-cafe/2016/11/09/501463338/zomba-prison-project-on-world-cafe\">inmates at Zomba Prison\u003c/a> in Malawi and \u003ca href=\"https://www.cbc.ca/player/play/2696103780\">genocide survivors in Cambodia\u003c/a>. He won a Grammy Award for the production of the album \u003ca href=\"https://www.nytimes.com/2011/09/01/arts/music/tinariwens-tassili-desert-blues-recorded-on-site.html\">Tassili\u003c/a> from the band \u003ca href=\"https://www.npr.org/2016/05/17/478372649/watch-tinariwen-perform-tin-ihlan-live-at-pickathon\">Tinariwen\u003c/a>, which has roots in Mali and Algeria.\u003c/p>\n\u003cfigure id=\"attachment_11839064\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11839064\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-800x600.jpg\" alt='Ian Brennan working with \"The Good Ones,\" a musical group in Rwanda.' width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-1536x1152.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-1832x1374.jpg 1832w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-1376x1032.jpg 1376w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-1044x783.jpg 1044w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-632x474.jpg 632w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-536x402.jpg 536w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Ian Brennan working with \"The Good Ones,\" a musical group in Rwanda. \u003ccite>(Marilena Umuhoza Delli)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>More recently, Brennan has worked closer to home, producing an album called \u003ca href=\"https://datebook.sfchronicle.com/music/producer-taps-voices-of-oaklands-homeless-community-for-new-album\">Homeless Oakland Heart\u003c/a> in 2019, which features recordings of unsheltered people on the streets of West Oakland — singing, rapping, reciting poetry and playing instruments, including a broken, nylon-string guitar one man had in his tent.\u003c/p>\n\u003cp>Now, Brennan has turned his mic on his older sister, Jane Brennan, who was born with Down syndrome. She and her companions at an adult care facility in Contra Costa County call themselves “The Sheltered Workshop Singers.” They released their first album, \u003ca href=\"https://shelteredworkshopsingers.bandcamp.com/album/who-you-calling-slow\">\"Who You Calling Slow?\"\u003c/a> this month.\u003c/p>\n\u003cfigure id=\"attachment_11839062\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11839062\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-800x800.jpg\" alt='The album \"Who You Calling Slow?\" produced by Grammy Award-winner Ian Brennan, captures the voices and improvised songs of his sister, who has Down syndrome, and her companions.' width=\"800\" height=\"800\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-800x800.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-1020x1020.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-160x160.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-1472x1472.jpg 1472w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-1104x1104.jpg 1104w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-912x912.jpg 912w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-550x550.jpg 550w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-470x470.jpg 470w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut.jpg 1536w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">The album \"Who You Calling Slow?\" produced by Grammy Award-winner Ian Brennan, captures the voices and improvised songs of his sister, who has Down syndrome, and her companions. \u003ccite>(Marilena Umuhoza Delli)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Brennan sat down recently to talk with California Report Magazine host Sasha Khokha about recording the album. Here are some highlights.\u003c/p>\n\u003cp>\u003cem>Comments have been edited for brevity and clarity.\u003c/em>\u003c/p>\n\u003ch3>\u003cstrong>On Growing Up With Jane\u003c/strong>\u003c/h3>\n\u003cp>Jane was and is one of the biggest factors in my life. The most significant individual growing up really in my whole world was her. We're only 14 months apart. And for better or for worse, she took care of me and she took care of the rest of us and the family. And it was because of her that we that we stayed together as a family. I don't know that we would've made it without her.\u003c/p>\n\u003cfigure id=\"attachment_11839063\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11839063\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut-800x1384.jpg\" alt=\"Ian Brennan with his older sister, Jane Brennan, in the 1970s.\" width=\"800\" height=\"1384\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut-800x1384.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut-1020x1764.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut-160x277.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut-888x1536.jpg 888w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut.jpg 1184w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Ian Brennan with his older sister, Jane Brennan, in the 1970s. \u003ccite>(Courtesy of Ian Brennan)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>I started playing guitar when I was five. I don't really remember not playing music. I only really remember music as a part of everyday life, as a way to connect, a way to communicate. For my sister and her peers, it was dance — the freedom that they express themselves with — was always so extraordinary.\u003c/p>\n\u003cp>[pullquote size=\"medium\" align=\"right\" citation=\"Ian Brennan, music producer\"]'We used some of the singers' own devices — the wheelchairs, the canes. There was a yoga ball. It's 100% live.'[/pullquote]\u003c/p>\n\u003cp>Jane has old vinyl records of mine and some other folks. And she's played those records until they're unplayable or continues to play them when they're barely playable. I'd say she's, with great certainty, the only person left on the planet Earth, if ever there were many, that listens to any of my music. She still embraces it. I think for her, probably a lot of it is the memories that surround the music.\u003c/p>\n\u003cfigure id=\"attachment_11839065\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11839065\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44996_hotelutah-qut-800x513.jpg\" alt=\"Ian Brennan performing in the '90s at the Hotel Utah Saloon in San Francisco.\" width=\"800\" height=\"513\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44996_hotelutah-qut-800x513.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44996_hotelutah-qut-1020x653.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44996_hotelutah-qut-160x103.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44996_hotelutah-qut-1536x984.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44996_hotelutah-qut.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Ian Brennan performing in the '90s at the Hotel Utah Saloon in San Francisco. \u003ccite>(Courtesy of Ian Brennan)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003ch3>\u003cstrong>On Jane’s Musical Abilities\u003c/strong>\u003c/h3>\n\u003cp>Well, my mother played a little piano as part of her therapy, but Jane would play it and she would bang away on it — again, without any reservation. Music was our language of communicating with one another. I was verbal before my sister was verbal, though she was older. She taught me a way of listening: to listen not to the words, but the spirit.\u003c/p>\n\u003cp>The beautiful thing about her is that she is mostly nonverbal, but she knows the words to every song — she just makes them up as she goes along. And there's not that self-consciousness. It's not a performance. It's instead just an expression of her state.\u003c/p>\n\u003cp>If we listen to each other more carefully, we learn and we have so much to learn from each other. What I learned from my sister is that she may be developmentally delayed, yet her emotional intelligence is higher than almost anybody I've ever met.\u003c/p>\n\u003cfigure id=\"attachment_11839264\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11839264\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-800x855.jpg\" alt=\"Jane Brennan with her late father, James Brennan.\" width=\"800\" height=\"855\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-800x855.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-1020x1090.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-160x171.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-1437x1536.jpg 1437w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-1916x2048.jpg 1916w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Jane Brennan with her late father, James Brennan. \u003ccite>(Marilena Umuhoza Delli)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003ch3>\u003cstrong>On Producing 'Farewell Father'\u003c/strong>\u003c/h3>\n\u003cp>We had an idea about doing a recording with Jane and her peers for years. My father was 85, and we realized that if we were going to do it, we needed to do it now. My father had been diagnosed with less than a year to live. Jane is now 55. The life expectancy, unfortunately, for her generation with Down syndrome is 60.\u003c/p>\n\u003cp>We did the recordings with three generations — my three-year-old daughter and my father were present. So were Jane and her peers, many of whom I've known their entire lives. On the song \"Farewell Father,\" you can hear Jane singing to my father and telling him goodbye. And, in fact, he passed away two months later.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003ch3>\u003cstrong>On Recording His Family After Recording Around the Globe\u003c/strong>\u003c/h3>\n\u003cp>It felt like literally coming home. It really came full circle musically because the music for me really started with her. It's been deeply rewarding to hear those voices and to see that there are no amusical people. Music is everywhere. It's necessary for survival.\u003c/p>\n\u003cp>I really evaluate a record based on: is it unique? Is it different? Does it have a reason to exist for that reason alone? I think that the voices here are unlike any others. The things that are expressed are real. This recording is comprised of instant compositions with people that had never written songs before, sung into a microphone before or played instruments before. Nonetheless, the results were stunning.\u003c/p>\n\u003ch3>\u003cstrong>On the Recording Techniques Used\u003c/strong>\u003c/h3>\n\u003cp>We used some of the singers' own devices — the wheelchairs, the canes. There was a yoga ball. It's 100% live. What you're hearing is something that happened.\u003c/p>\n\u003cp>On most recordings nowadays, what we hear is something that never happened. It's a simulation of an event that never actually occurred. I am invested in trying to represent a place and time and a moment in time that can connect people to reality in such a way that they can hear better.\u003c/p>\n\u003ch3>\u003cstrong>On the Album's Message\u003c/strong>\u003c/h3>\n\u003cp>What I've always learned from Jane and her peers throughout my life is perseverance and tenacity and acceptance. It's not a surrender, but an acceptance of limitations, working with them and beyond them.\u003c/p>\n\u003cp>People on this album make up these incredible melodies that are very intricate and unique and complex. Some people have heard them and they say, \"What language is that in?\" And it's easy. It's in the language of music. It's the universal language. There are no words to those songs. The meaning is embedded in the music itself.\u003c/p>\n\u003cp>https://www.youtube.com/embed/q-hvvuGQTUM\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n","blocks":[],"excerpt":"After years traveling the globe making field recordings of musicians, Ian Brennan turns the mic on his sister to record the album 'Who You Calling Slow?'","status":"publish","parent":0,"modified":1601337180,"stats":{"hasAudio":false,"hasVideo":true,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":23,"wordCount":1204},"headData":{"title":"'Music Was Our Language': Grammy Award-Winning Producer Turns the Mic on His Sister | KQED","description":"After years traveling the globe making field recordings of musicians, Ian Brennan turns the mic on his sister to record the album 'Who You Calling Slow?'","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"'Music Was Our Language': Grammy Award-Winning Producer Turns the Mic on His Sister","datePublished":"2020-09-26T17:00:50.000Z","dateModified":"2020-09-28T23:53:00.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"Y","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"disqusIdentifier":"11839059 https://ww2.kqed.org/news/?p=11839059","disqusUrl":"https://ww2.kqed.org/news/2020/09/26/music-was-our-language-grammy-award-winning-producer-turns-the-mic-on-his-sister/","disqusTitle":"'Music Was Our Language': Grammy Award-Winning Producer Turns the Mic on His Sister","audioUrl":"https://traffic.omny.fm/d/clips/0af137ef-751e-4b19-a055-aaef00d2d578/ffca7e9f-6831-41c5-bcaf-aaef00f5a073/26264005-cc48-4c7e-b5e5-ac42000caff4/audio.mp3","path":"/news/11839059/music-was-our-language-grammy-award-winning-producer-turns-the-mic-on-his-sister","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Musician Ian Brennan was born in Oakland and made a name for himself performing in live shows at the \u003ca href=\"http://www.mtv.com/news/350127/barbara-manning-joins-colorful-mix-on-laundromat-cd/\">Brainwash Laundromat in ‘90s San Francisco\u003c/a>. He went on to become a producer, working with artists like Lucinda Williams and Ramblin’ Jack Elliot.\u003c/p>\n\u003cp>But Brennan is best known for his field recordings. Along with his wife, photographer and filmmaker Marilena Delli, Brennan has recorded musicians around the world, like the \u003ca href=\"https://www.npr.org/sections/world-cafe/2016/11/09/501463338/zomba-prison-project-on-world-cafe\">inmates at Zomba Prison\u003c/a> in Malawi and \u003ca href=\"https://www.cbc.ca/player/play/2696103780\">genocide survivors in Cambodia\u003c/a>. He won a Grammy Award for the production of the album \u003ca href=\"https://www.nytimes.com/2011/09/01/arts/music/tinariwens-tassili-desert-blues-recorded-on-site.html\">Tassili\u003c/a> from the band \u003ca href=\"https://www.npr.org/2016/05/17/478372649/watch-tinariwen-perform-tin-ihlan-live-at-pickathon\">Tinariwen\u003c/a>, which has roots in Mali and Algeria.\u003c/p>\n\u003cfigure id=\"attachment_11839064\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11839064\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-800x600.jpg\" alt='Ian Brennan working with \"The Good Ones,\" a musical group in Rwanda.' width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-1536x1152.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-1832x1374.jpg 1832w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-1376x1032.jpg 1376w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-1044x783.jpg 1044w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-632x474.jpg 632w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-536x402.jpg 536w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Ian Brennan working with \"The Good Ones,\" a musical group in Rwanda. \u003ccite>(Marilena Umuhoza Delli)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>More recently, Brennan has worked closer to home, producing an album called \u003ca href=\"https://datebook.sfchronicle.com/music/producer-taps-voices-of-oaklands-homeless-community-for-new-album\">Homeless Oakland Heart\u003c/a> in 2019, which features recordings of unsheltered people on the streets of West Oakland — singing, rapping, reciting poetry and playing instruments, including a broken, nylon-string guitar one man had in his tent.\u003c/p>\n\u003cp>Now, Brennan has turned his mic on his older sister, Jane Brennan, who was born with Down syndrome. She and her companions at an adult care facility in Contra Costa County call themselves “The Sheltered Workshop Singers.” They released their first album, \u003ca href=\"https://shelteredworkshopsingers.bandcamp.com/album/who-you-calling-slow\">\"Who You Calling Slow?\"\u003c/a> this month.\u003c/p>\n\u003cfigure id=\"attachment_11839062\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11839062\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-800x800.jpg\" alt='The album \"Who You Calling Slow?\" produced by Grammy Award-winner Ian Brennan, captures the voices and improvised songs of his sister, who has Down syndrome, and her companions.' width=\"800\" height=\"800\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-800x800.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-1020x1020.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-160x160.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-1472x1472.jpg 1472w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-1104x1104.jpg 1104w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-912x912.jpg 912w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-550x550.jpg 550w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-470x470.jpg 470w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut.jpg 1536w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">The album \"Who You Calling Slow?\" produced by Grammy Award-winner Ian Brennan, captures the voices and improvised songs of his sister, who has Down syndrome, and her companions. \u003ccite>(Marilena Umuhoza Delli)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Brennan sat down recently to talk with California Report Magazine host Sasha Khokha about recording the album. Here are some highlights.\u003c/p>\n\u003cp>\u003cem>Comments have been edited for brevity and clarity.\u003c/em>\u003c/p>\n\u003ch3>\u003cstrong>On Growing Up With Jane\u003c/strong>\u003c/h3>\n\u003cp>Jane was and is one of the biggest factors in my life. The most significant individual growing up really in my whole world was her. We're only 14 months apart. And for better or for worse, she took care of me and she took care of the rest of us and the family. And it was because of her that we that we stayed together as a family. I don't know that we would've made it without her.\u003c/p>\n\u003cfigure id=\"attachment_11839063\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11839063\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut-800x1384.jpg\" alt=\"Ian Brennan with his older sister, Jane Brennan, in the 1970s.\" width=\"800\" height=\"1384\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut-800x1384.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut-1020x1764.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut-160x277.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut-888x1536.jpg 888w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut.jpg 1184w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Ian Brennan with his older sister, Jane Brennan, in the 1970s. \u003ccite>(Courtesy of Ian Brennan)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>I started playing guitar when I was five. I don't really remember not playing music. I only really remember music as a part of everyday life, as a way to connect, a way to communicate. For my sister and her peers, it was dance — the freedom that they express themselves with — was always so extraordinary.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"'We used some of the singers' own devices — the wheelchairs, the canes. There was a yoga ball. It's 100% live.'","name":"pullquote","attributes":{"named":{"size":"medium","align":"right","citation":"Ian Brennan, music producer","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Jane has old vinyl records of mine and some other folks. And she's played those records until they're unplayable or continues to play them when they're barely playable. I'd say she's, with great certainty, the only person left on the planet Earth, if ever there were many, that listens to any of my music. She still embraces it. I think for her, probably a lot of it is the memories that surround the music.\u003c/p>\n\u003cfigure id=\"attachment_11839065\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11839065\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44996_hotelutah-qut-800x513.jpg\" alt=\"Ian Brennan performing in the '90s at the Hotel Utah Saloon in San Francisco.\" width=\"800\" height=\"513\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44996_hotelutah-qut-800x513.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44996_hotelutah-qut-1020x653.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44996_hotelutah-qut-160x103.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44996_hotelutah-qut-1536x984.jpg 1536w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44996_hotelutah-qut.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Ian Brennan performing in the '90s at the Hotel Utah Saloon in San Francisco. \u003ccite>(Courtesy of Ian Brennan)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003ch3>\u003cstrong>On Jane’s Musical Abilities\u003c/strong>\u003c/h3>\n\u003cp>Well, my mother played a little piano as part of her therapy, but Jane would play it and she would bang away on it — again, without any reservation. Music was our language of communicating with one another. I was verbal before my sister was verbal, though she was older. She taught me a way of listening: to listen not to the words, but the spirit.\u003c/p>\n\u003cp>The beautiful thing about her is that she is mostly nonverbal, but she knows the words to every song — she just makes them up as she goes along. And there's not that self-consciousness. It's not a performance. It's instead just an expression of her state.\u003c/p>\n\u003cp>If we listen to each other more carefully, we learn and we have so much to learn from each other. What I learned from my sister is that she may be developmentally delayed, yet her emotional intelligence is higher than almost anybody I've ever met.\u003c/p>\n\u003cfigure id=\"attachment_11839264\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11839264\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-800x855.jpg\" alt=\"Jane Brennan with her late father, James Brennan.\" width=\"800\" height=\"855\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-800x855.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-1020x1090.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-160x171.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-1437x1536.jpg 1437w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-1916x2048.jpg 1916w, https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Jane Brennan with her late father, James Brennan. \u003ccite>(Marilena Umuhoza Delli)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003ch3>\u003cstrong>On Producing 'Farewell Father'\u003c/strong>\u003c/h3>\n\u003cp>We had an idea about doing a recording with Jane and her peers for years. My father was 85, and we realized that if we were going to do it, we needed to do it now. My father had been diagnosed with less than a year to live. Jane is now 55. The life expectancy, unfortunately, for her generation with Down syndrome is 60.\u003c/p>\n\u003cp>We did the recordings with three generations — my three-year-old daughter and my father were present. So were Jane and her peers, many of whom I've known their entire lives. On the song \"Farewell Father,\" you can hear Jane singing to my father and telling him goodbye. And, in fact, he passed away two months later.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003ch3>\u003cstrong>On Recording His Family After Recording Around the Globe\u003c/strong>\u003c/h3>\n\u003cp>It felt like literally coming home. It really came full circle musically because the music for me really started with her. It's been deeply rewarding to hear those voices and to see that there are no amusical people. Music is everywhere. It's necessary for survival.\u003c/p>\n\u003cp>I really evaluate a record based on: is it unique? Is it different? Does it have a reason to exist for that reason alone? I think that the voices here are unlike any others. The things that are expressed are real. This recording is comprised of instant compositions with people that had never written songs before, sung into a microphone before or played instruments before. Nonetheless, the results were stunning.\u003c/p>\n\u003ch3>\u003cstrong>On the Recording Techniques Used\u003c/strong>\u003c/h3>\n\u003cp>We used some of the singers' own devices — the wheelchairs, the canes. There was a yoga ball. It's 100% live. What you're hearing is something that happened.\u003c/p>\n\u003cp>On most recordings nowadays, what we hear is something that never happened. It's a simulation of an event that never actually occurred. I am invested in trying to represent a place and time and a moment in time that can connect people to reality in such a way that they can hear better.\u003c/p>\n\u003ch3>\u003cstrong>On the Album's Message\u003c/strong>\u003c/h3>\n\u003cp>What I've always learned from Jane and her peers throughout my life is perseverance and tenacity and acceptance. It's not a surrender, but an acceptance of limitations, working with them and beyond them.\u003c/p>\n\u003cp>People on this album make up these incredible melodies that are very intricate and unique and complex. Some people have heard them and they say, \"What language is that in?\" And it's easy. It's in the language of music. It's the universal language. There are no words to those songs. The meaning is embedded in the music itself.\u003c/p>\u003c/p>\u003cp>\u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutube'>\n \u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutubeInside'>\n \u003ciframe\n loading='lazy'\n class='utils-parseShortcode-shortcodes-__youtubeShortcode__youtubePlayer'\n type='text/html'\n src='//www.youtube.com/embed/q-hvvuGQTUM'\n title='//www.youtube.com/embed/q-hvvuGQTUM'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11839059/music-was-our-language-grammy-award-winning-producer-turns-the-mic-on-his-sister","authors":["11660","8637"],"programs":["news_26731"],"categories":["news_223","news_8"],"tags":["news_1467","news_28576","news_21845","news_28578","news_28575","news_1425"],"featImg":"news_11839265","label":"news_26731"},"news_11819539":{"type":"posts","id":"news_11819539","meta":{"index":"posts_1591205157","site":"news","id":"11819539","score":null,"sort":[1590238852000]},"guestAuthors":[],"slug":"it-just-burns-me-up-disability-activist-alice-wong-reminds-california-this-pandemic-is-far-from-over","title":"'It Just Burns Me Up': Disability Activist Alice Wong Reminds California This Pandemic Is Far From Over","publishDate":1590238852,"format":"audio","headTitle":"The California Report Magazine | KQED News","labelTerm":{},"content":"\u003cp>Alice Wong is an influential disability rights activist, media maker and podcaster who hosts the podcast \u003ca href=\"https://disabilityvisibilityproject.com/podcast/\">Disability/Visibility \u003c/a>from her home in San Francisco.\u003c/p>\n\u003cp>Here are some highlights from her recent conversation with California Report Magazine host Sasha Khokha.\u003c/p>\n\u003cp>\u003cem>Comments have been edited for brevity and clarity. \u003c/em>\u003c/p>\n\u003cp>\u003cstrong>What's most troubling about the COVID-19 pandemic:\u003c/strong>\u003c/p>\n\u003cp>Seeing so many people go outside and really, absolutely not social distancing, not wearing masks. It just burns me up, the way people are so ready to be over the pandemic. I don't think we're anywhere close to it. They're going to actually create more infections and subsequently more deaths.\u003c/p>\n\u003cp>[pullquote size=\"medium\" align=\"right\" citation=\"Alice Wong, disability rights activist\"]\"We've learned how to make do with living in a world that's rather hostile and never designed for us in the first place. There's a lot of lessons and insight that disabled folks have to share.\"[/pullquote]\u003c/p>\n\u003cp>They're still advising high-risk people like myself to just stay at home. I feel like this sets up this very unfair dynamic where the burden of staying safe and healthy falls upon those who are the most marginalized and the most impacted. It's going to create additional complications, consequences that all of us are going to suffer.\u003c/p>\n\u003cp>\u003cstrong>On her recent \u003ca href=\"https://www.vox.com/first-person/2020/4/4/21204261/coronavirus-covid-19-disabled-people-disabilities-triage\">Vox essay\u003c/a>, \"I'm Disabled and I need a ventilator to live. Am I expendable during this pandemic?\"\u003c/strong>\u003c/p>\n\u003cp>It doesn't surprise me that state guidelines or health systems would say, \"We have only this many ventilators or this many staff or resources. You know, we really need to think about who are the most likely to benefit.\" Any sort of calculus about who's the most worthy often takes into account issues about quality of life. I do know that people see me with my wheelchair, with my ventilator on, and they just can't imagine living this way. Some people just straight up feel like this kind of life is a life not worth living. These kinds of attitudes end up really excluding and discriminating against folks like me.\u003c/p>\n\u003cp>[aside tag=\"disability\" label=\"related coverage\"]\u003c/p>\n\u003cp>\u003cstrong>How the pandemic has highlighted the importance of accessibility:\u003c/strong>\u003c/p>\n\u003cp>I think it's bittersweet. It's wonderful that people are suddenly realizing, \"Oh, you know, we should make this concert live streaming!\" That working from home should be more flexible, or learning from home. Realizing and seeing how access really does benefit everyone.\u003c/p>\n\u003cp>But I also feel some concern, and also some irritation, because disabled people have been advocating for this kind of thing for 30 years after the passage of the Americans With Disabilities Act. There's still this idea that requesting accommodations and advocating for them is somehow asking for something extra, some unfair advantage. These kinds of adaptations should absolutely remain and become a part of the default in the ways we organize and the ways we connect as people.\u003c/p>\n\u003cp>\u003cstrong>The importance of caregivers:\u003c/strong>\u003c/p>\n\u003cp>For a lot of us, like myself, it's basically impossible to social distance and isolate ourselves. I can't get out of bed without help. If I'm infected or if my [caregiver] is infected, there's really no way to protect myself from exposure.\u003c/p>\n\u003cp>[pullquote size=\"medium\" align=\"right\" citation=\"Alice Wong, disability rights activist\"]\"It's so troubling to see people so ready to get the economy jump-started and just relaxing everything, while so many people are dying behind closed doors. I don't understand why there isn't more outrage over these deaths.\"[/pullquote]\u003c/p>\n\u003cp>I want the people who help me to have all the protections, equipment and everything they need. This is a workforce that's under the category of \"essential workers,\" but they truly aren't valued in our society in terms of caregiving. This is a very gendered profession where so many of the workers are women of color or immigrants. I'd like to see an increase in wages and benefits for this workforce. Access to protective gear for anyone that does this kind of work, [including] family caregivers.\u003c/p>\n\u003cp>One thing that's really distressing to me is the number of workers and people living at nursing homes and other long-term care facilities all over California and nationally that are dying and infected with COVID-19.\u003c/p>\n\u003cp>It's so troubling to see people so ready to get the economy jump-started and just relaxing everything, while so many people are dying behind closed doors. I don't understand why there isn't more outrage over these deaths, because these systems, these institutions are broken. This a really important time to think about, to rethink, about why these systems exist and to really question them.\u003c/p>\n\u003cfigure id=\"attachment_11819587\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg 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://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43260_podcast-katt-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-1832x1374.jpg 1832w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-1376x1032.jpg 1376w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-1044x783.jpg 1044w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-632x474.jpg 632w, https://ww2.kqed.org/app/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 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://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43259_Disability_Visibility6-qut.jpg 778w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43259_Disability_Visibility6-qut-160x247.jpg 160w\" sizes=\"(max-width: 389px) 100vw, 389px\">\u003cfigcaption class=\"wp-caption-text\">Alice Wong's book, \"Disability/Visibility: First Person Stories for the 21st Century,\" comes out in June 2020. \u003ccite>(Courtesy of Alice Wong)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Wong's book \"\u003ca href=\"https://disabilityvisibilityproject.com/book/\">Disability/Visibility: First Person Stories for the 21st Century\u003c/a>\" comes out in June.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n","blocks":[],"excerpt":"Influential activist and podcaster Alice Wong talks about lessons learned from the coronavirus pandemic and her hopes for a more inclusive future.","status":"publish","parent":0,"modified":1623277774,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":27,"wordCount":1114},"headData":{"title":"'It Just Burns Me Up': Disability Activist Alice Wong Reminds California This Pandemic Is Far From Over | KQED","description":"Influential activist and podcaster Alice Wong talks about lessons learned from the coronavirus pandemic and her hopes for a more inclusive future.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"'It Just Burns Me Up': Disability Activist Alice Wong Reminds California This Pandemic Is Far From Over","datePublished":"2020-05-23T13:00:52.000Z","dateModified":"2021-06-09T22:29:34.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"Y","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"disqusIdentifier":"11819539 https://ww2.kqed.org/news/?p=11819539","disqusUrl":"https://ww2.kqed.org/news/2020/05/23/it-just-burns-me-up-disability-activist-alice-wong-reminds-california-this-pandemic-is-far-from-over/","disqusTitle":"'It Just Burns Me Up': Disability Activist Alice Wong Reminds California This Pandemic Is Far From Over","source":"coronavirus","sourceUrl":"https://www.kqed.org/coronavirus","audioUrl":"https://traffic.omny.fm/d/clips/0af137ef-751e-4b19-a055-aaef00d2d578/ffca7e9f-6831-41c5-bcaf-aaef00f5a073/48ee046a-7628-403e-be71-abc4002c2b61/audio.mp3","path":"/news/11819539/it-just-burns-me-up-disability-activist-alice-wong-reminds-california-this-pandemic-is-far-from-over","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Alice Wong is an influential disability rights activist, media maker and podcaster who hosts the podcast \u003ca href=\"https://disabilityvisibilityproject.com/podcast/\">Disability/Visibility \u003c/a>from her home in San Francisco.\u003c/p>\n\u003cp>Here are some highlights from her recent conversation with California Report Magazine host Sasha Khokha.\u003c/p>\n\u003cp>\u003cem>Comments have been edited for brevity and clarity. \u003c/em>\u003c/p>\n\u003cp>\u003cstrong>What's most troubling about the COVID-19 pandemic:\u003c/strong>\u003c/p>\n\u003cp>Seeing so many people go outside and really, absolutely not social distancing, not wearing masks. It just burns me up, the way people are so ready to be over the pandemic. I don't think we're anywhere close to it. They're going to actually create more infections and subsequently more deaths.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"\"We've learned how to make do with living in a world that's rather hostile and never designed for us in the first place. There's a lot of lessons and insight that disabled folks have to share.\"","name":"pullquote","attributes":{"named":{"size":"medium","align":"right","citation":"Alice Wong, disability rights activist","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>They're still advising high-risk people like myself to just stay at home. I feel like this sets up this very unfair dynamic where the burden of staying safe and healthy falls upon those who are the most marginalized and the most impacted. It's going to create additional complications, consequences that all of us are going to suffer.\u003c/p>\n\u003cp>\u003cstrong>On her recent \u003ca href=\"https://www.vox.com/first-person/2020/4/4/21204261/coronavirus-covid-19-disabled-people-disabilities-triage\">Vox essay\u003c/a>, \"I'm Disabled and I need a ventilator to live. Am I expendable during this pandemic?\"\u003c/strong>\u003c/p>\n\u003cp>It doesn't surprise me that state guidelines or health systems would say, \"We have only this many ventilators or this many staff or resources. You know, we really need to think about who are the most likely to benefit.\" Any sort of calculus about who's the most worthy often takes into account issues about quality of life. I do know that people see me with my wheelchair, with my ventilator on, and they just can't imagine living this way. Some people just straight up feel like this kind of life is a life not worth living. These kinds of attitudes end up really excluding and discriminating against folks like me.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"tag":"disability","label":"related coverage "},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cstrong>How the pandemic has highlighted the importance of accessibility:\u003c/strong>\u003c/p>\n\u003cp>I think it's bittersweet. It's wonderful that people are suddenly realizing, \"Oh, you know, we should make this concert live streaming!\" That working from home should be more flexible, or learning from home. Realizing and seeing how access really does benefit everyone.\u003c/p>\n\u003cp>But I also feel some concern, and also some irritation, because disabled people have been advocating for this kind of thing for 30 years after the passage of the Americans With Disabilities Act. There's still this idea that requesting accommodations and advocating for them is somehow asking for something extra, some unfair advantage. These kinds of adaptations should absolutely remain and become a part of the default in the ways we organize and the ways we connect as people.\u003c/p>\n\u003cp>\u003cstrong>The importance of caregivers:\u003c/strong>\u003c/p>\n\u003cp>For a lot of us, like myself, it's basically impossible to social distance and isolate ourselves. I can't get out of bed without help. If I'm infected or if my [caregiver] is infected, there's really no way to protect myself from exposure.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"\"It's so troubling to see people so ready to get the economy jump-started and just relaxing everything, while so many people are dying behind closed doors. I don't understand why there isn't more outrage over these deaths.\"","name":"pullquote","attributes":{"named":{"size":"medium","align":"right","citation":"Alice Wong, disability rights activist","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>I want the people who help me to have all the protections, equipment and everything they need. This is a workforce that's under the category of \"essential workers,\" but they truly aren't valued in our society in terms of caregiving. This is a very gendered profession where so many of the workers are women of color or immigrants. I'd like to see an increase in wages and benefits for this workforce. Access to protective gear for anyone that does this kind of work, [including] family caregivers.\u003c/p>\n\u003cp>One thing that's really distressing to me is the number of workers and people living at nursing homes and other long-term care facilities all over California and nationally that are dying and infected with COVID-19.\u003c/p>\n\u003cp>It's so troubling to see people so ready to get the economy jump-started and just relaxing everything, while so many people are dying behind closed doors. I don't understand why there isn't more outrage over these deaths, because these systems, these institutions are broken. This a really important time to think about, to rethink, about why these systems exist and to really question them.\u003c/p>\n\u003cfigure id=\"attachment_11819587\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg 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://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43260_podcast-katt-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-1832x1374.jpg 1832w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-1376x1032.jpg 1376w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-1044x783.jpg 1044w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-632x474.jpg 632w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43260_podcast-katt-qut-536x402.jpg 536w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Disability rights activist Alice Wong podcasting at her desk at home. \u003ccite>(Eddie Hernandez Photography)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>What she's hearing from her podcast listeners:\u003c/strong>\u003c/p>\n\u003cp>We really need more stories and perspectives by the people who are most impacted by this pandemic. I'm talking about multiply-marginalized people, like black, disabled, chronically ill folks. Because we can't separate the racism and the ableism and classism from this experience. This wasn't the first crisis that disabled folks faced. This is just one of a long kind of arc. We've learned how to make do with living in a world that's rather hostile and never designed for us in the first place. There's a lot of lessons and insight that disabled folks have to share.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cstrong>What it would take to build an inclusive future:\u003c/strong>\u003c/p>\n\u003cp>I think the future could look so different. I think so much of what's happened during the pandemic and the flaws in the structures and systems we have are basically a failure of imagination. What if we designed ways that people could be integrated into society with the supports and services in place so they have as much autonomy as possible? This kind of work is already happening. By communities of color, queer communities, disabled communities, in the way that we provide \u003ca href=\"https://www.kqed.org/news/11806414/coronavirus-how-these-disabled-activists-are-taking-matters-into-their-own-sanitized-hand\">mutual aid\u003c/a> and care for one another.\u003c/p>\n\u003cp>There's such an opportunity to kind of take these lessons and scale it up so that we really can have people living the lives that they want. I feel like that's absolutely possible. But it's just it's a matter of a culture shift and political will.\u003c/p>\n\u003cfigure id=\"attachment_11819597\" class=\"wp-caption aligncenter\" style=\"max-width: 389px\">\u003cimg 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://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43259_Disability_Visibility6-qut.jpg 778w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/RS43259_Disability_Visibility6-qut-160x247.jpg 160w\" sizes=\"(max-width: 389px) 100vw, 389px\">\u003cfigcaption class=\"wp-caption-text\">Alice Wong's book, \"Disability/Visibility: First Person Stories for the 21st Century,\" comes out in June 2020. \u003ccite>(Courtesy of Alice Wong)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Wong's book \"\u003ca href=\"https://disabilityvisibilityproject.com/book/\">Disability/Visibility: First Person Stories for the 21st Century\u003c/a>\" comes out in June.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11819539/it-just-burns-me-up-disability-activist-alice-wong-reminds-california-this-pandemic-is-far-from-over","authors":["11660","254"],"programs":["news_26731"],"categories":["news_457","news_8"],"tags":["news_28002","news_28001","news_26991","news_27350","news_27504","news_21845","news_29228","news_25262","news_28003","news_27626","news_27670"],"featImg":"news_11819596","label":"source_news_11819539"},"news_11817291":{"type":"posts","id":"news_11817291","meta":{"index":"posts_1591205157","site":"news","id":"11817291","score":null,"sort":[1589129996000]},"guestAuthors":[],"slug":"disabled-worker-in-yosemite-says-hes-going-broke-fast","title":"Disabled Worker in Yosemite Says He's 'Going Broke Fast'","publishDate":1589129996,"format":"audio","headTitle":"The California Report Magazine | KQED News","labelTerm":{"term":26731,"site":"news"},"content":"\u003cp>James Thompson thinks the only reason he got hired to work at Yosemite National Park was because he was blessed with a phone interview.\u003c/p>\n\u003cp>\"My employer couldn’t see my wheelchair,\" he said. \"He couldn’t see my service dog or the backpack on my back.\"\u003c/p>\n\u003cp>Thompson, 40, has cerebral palsy. By the time he applied to work for Aramark, the company operating Yosemite’s hotels and restaurants, he’d been homeless for months, living out of his storage unit in Rancho Cordova, California. His $943 Supplemental Security Income (SSI) check — the maximum amount allotted to low-income, disabled people — didn’t cover his basic living costs in Sacramento. The job at Yosemite, with its housing subsidized by the National Park Service, felt like a chance to start over. [pullquote]'I don't want to wear a welding mask just to make a stir fry, but the stove burners are up to my face.'[/pullquote]\u003c/p>\n\u003cp>It was. Outside his window, he could see evergreen trees and rivulets of water slide down granite walls. He loved learning about the park, studying the maps and memorizing the trails. At his job at the tour desk, Thompson was soon able to direct hikers and tell photographers when the sunlight hit the panoramic trail. For the first time in his life, he felt like a part of a community, one that really valued him.\u003c/p>\n\u003cp>\"I made more friends over the past year than I did the eight years I lived in Sacramento,\" Thomspon said.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>When COVID-19 hit, Yosemite closed on March 20. While 300 park workers were allowed to stay in their housing rent free, they were no longer getting paid. This was hard on all employees, but especially on Thompson.\u003c/p>\n\u003cp>Thompson doesn’t qualify for unemployment. Instead, he, along with nearly 41,000 disabled workers in California, rely on monthly disability benefits. What makes an unexpected job loss for this demographic even more difficult is that these benefits are based on one’s income from two months prior; so for every dollar Thompson earned, his disability check was reduced by 50 cents. For the entire month of April, he had $300 to live on. “I’m going broke fast,” he said. [aside tag=\"coronavirus\" label=\"More Coronavirus Coverage\"]\u003c/p>\n\u003cp>For the past few weeks, Thompson has been losing large swaths of hair. His doctor says it's a sign of stress and malnourishment. His immune system is half as strong as it should be.\u003c/p>\n\u003cp>Food is uniquely expensive for Thompson. He used to rely on the reduced-price meals Aramark served during shifts, but now with the hotels and kitchens closed, that’s not an option. The company is giving their employees $5 vouchers for food, but that money will come out of their paychecks when they start working again. His only option is to wheel himself a mile to the village store, priced for tourists, where a pack of chicken breasts costs $20. Cooking it up in the communal kitchen that’s not adapted for a person in a wheelchair can be dangerous.\u003c/p>\n\u003cp>“I don't want to wear a welding mask just to make a stir fry,” he said. “But the stove burners are up to my face.”\u003c/p>\n\u003cfigure id=\"attachment_11817430\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11817430\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/05/Image1-800x532.jpg\" alt=\"\" width=\"800\" height=\"532\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2020/05/Image1.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/Image1-160x106.jpg 160w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Curry Village housing in Yosemite Valley, where Thompson has lived for the past year. \u003ccite>(Courtesy of justinm)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Thompson realizes Yosemite isn’t the safest place long term for him. But that’s not his main focus. When the park reopens, which his employers say may be as soon as late May, he desperately wants to get back to work. He is estranged from his family, and he can’t afford to pay market rent. If he loses his job and his housing, he will have nowhere to go.[aside postID=\"news_11806414\"]\u003c/p>\n\u003cp>But Thompson is preparing for the worst. On May 8, Aramark laid off an estimated 90 shuttle bus drivers, giving those living in the park two weeks to vacate their homes. He fears he’s next.\u003c/p>\n\u003cp>On his Facebook page, Thompson wrote: “I want my friends outside of Yosemite to know that the chance of me needing to relocate due to a permanent layoff is extremely high as of today, and I would not have the traditional 30 day notice when it happens.”\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Aramark employees in Yosemite recently published an \u003ca href=\"https://www.change.org/p/california-governor-yosemite-national-park-employee-demands-covid-19?r\" target=\"_blank\" rel=\"noopener noreferrer\">online petition\u003c/a> to advocate for their housing rights.\u003c/p>\n\n","blocks":[],"excerpt":"James Thompson found a home working at Yosemite National Park. It’s now becoming more challenging to stay, but he’s not sure where he will go. ","status":"publish","parent":0,"modified":1589222364,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":16,"wordCount":752},"headData":{"title":"Disabled Worker in Yosemite Says He's 'Going Broke Fast' | KQED","description":"James Thompson found a home working at Yosemite National Park. It’s now becoming more challenging to stay, but he’s not sure where he will go. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"Disabled Worker in Yosemite Says He's 'Going Broke Fast'","datePublished":"2020-05-10T16:59:56.000Z","dateModified":"2020-05-11T18:39:24.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"Y","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"disqusIdentifier":"11817291 https://ww2.kqed.org/news/?p=11817291","disqusUrl":"https://ww2.kqed.org/news/2020/05/10/disabled-worker-in-yosemite-says-hes-going-broke-fast/","disqusTitle":"Disabled Worker in Yosemite Says He's 'Going Broke Fast'","audioUrl":"https://traffic.omny.fm/d/clips/0af137ef-751e-4b19-a055-aaef00d2d578/ffca7e9f-6831-41c5-bcaf-aaef00f5a073/3c127d1f-dae0-4130-ac75-abb50185e193/audio.mp3","nprByline":"Ellie Lightfoot","path":"/news/11817291/disabled-worker-in-yosemite-says-hes-going-broke-fast","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>James Thompson thinks the only reason he got hired to work at Yosemite National Park was because he was blessed with a phone interview.\u003c/p>\n\u003cp>\"My employer couldn’t see my wheelchair,\" he said. \"He couldn’t see my service dog or the backpack on my back.\"\u003c/p>\n\u003cp>Thompson, 40, has cerebral palsy. By the time he applied to work for Aramark, the company operating Yosemite’s hotels and restaurants, he’d been homeless for months, living out of his storage unit in Rancho Cordova, California. His $943 Supplemental Security Income (SSI) check — the maximum amount allotted to low-income, disabled people — didn’t cover his basic living costs in Sacramento. The job at Yosemite, with its housing subsidized by the National Park Service, felt like a chance to start over. \u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"'I don't want to wear a welding mask just to make a stir fry, but the stove burners are up to my face.'","name":"pullquote","attributes":{"named":{"label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>It was. Outside his window, he could see evergreen trees and rivulets of water slide down granite walls. He loved learning about the park, studying the maps and memorizing the trails. At his job at the tour desk, Thompson was soon able to direct hikers and tell photographers when the sunlight hit the panoramic trail. For the first time in his life, he felt like a part of a community, one that really valued him.\u003c/p>\n\u003cp>\"I made more friends over the past year than I did the eight years I lived in Sacramento,\" Thomspon said.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>When COVID-19 hit, Yosemite closed on March 20. While 300 park workers were allowed to stay in their housing rent free, they were no longer getting paid. This was hard on all employees, but especially on Thompson.\u003c/p>\n\u003cp>Thompson doesn’t qualify for unemployment. Instead, he, along with nearly 41,000 disabled workers in California, rely on monthly disability benefits. What makes an unexpected job loss for this demographic even more difficult is that these benefits are based on one’s income from two months prior; so for every dollar Thompson earned, his disability check was reduced by 50 cents. For the entire month of April, he had $300 to live on. “I’m going broke fast,” he said. \u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"tag":"coronavirus","label":"More Coronavirus Coverage "},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>For the past few weeks, Thompson has been losing large swaths of hair. His doctor says it's a sign of stress and malnourishment. His immune system is half as strong as it should be.\u003c/p>\n\u003cp>Food is uniquely expensive for Thompson. He used to rely on the reduced-price meals Aramark served during shifts, but now with the hotels and kitchens closed, that’s not an option. The company is giving their employees $5 vouchers for food, but that money will come out of their paychecks when they start working again. His only option is to wheel himself a mile to the village store, priced for tourists, where a pack of chicken breasts costs $20. Cooking it up in the communal kitchen that’s not adapted for a person in a wheelchair can be dangerous.\u003c/p>\n\u003cp>“I don't want to wear a welding mask just to make a stir fry,” he said. “But the stove burners are up to my face.”\u003c/p>\n\u003cfigure id=\"attachment_11817430\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11817430\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/05/Image1-800x532.jpg\" alt=\"\" width=\"800\" height=\"532\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2020/05/Image1.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2020/05/Image1-160x106.jpg 160w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Curry Village housing in Yosemite Valley, where Thompson has lived for the past year. \u003ccite>(Courtesy of justinm)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Thompson realizes Yosemite isn’t the safest place long term for him. But that’s not his main focus. When the park reopens, which his employers say may be as soon as late May, he desperately wants to get back to work. He is estranged from his family, and he can’t afford to pay market rent. If he loses his job and his housing, he will have nowhere to go.\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"postid":"news_11806414","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>But Thompson is preparing for the worst. On May 8, Aramark laid off an estimated 90 shuttle bus drivers, giving those living in the park two weeks to vacate their homes. He fears he’s next.\u003c/p>\n\u003cp>On his Facebook page, Thompson wrote: “I want my friends outside of Yosemite to know that the chance of me needing to relocate due to a permanent layoff is extremely high as of today, and I would not have the traditional 30 day notice when it happens.”\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Aramark employees in Yosemite recently published an \u003ca href=\"https://www.change.org/p/california-governor-yosemite-national-park-employee-demands-covid-19?r\" target=\"_blank\" rel=\"noopener noreferrer\">online petition\u003c/a> to advocate for their housing rights.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11817291/disabled-worker-in-yosemite-says-hes-going-broke-fast","authors":["byline_news_11817291"],"programs":["news_72","news_26731"],"categories":["news_8"],"tags":["news_27350","news_27504","news_21845","news_17603"],"featImg":"news_11817431","label":"news_26731"},"news_11806414":{"type":"posts","id":"news_11806414","meta":{"index":"posts_1591205157","site":"news","id":"11806414","score":null,"sort":[1584481233000]},"guestAuthors":[],"slug":"coronavirus-how-these-disabled-activists-are-taking-matters-into-their-own-sanitized-hands","title":"Coronavirus: How These Disabled Activists Are Taking Matters Into Their Own (Sanitized) Hands","publishDate":1584481233,"format":"standard","headTitle":"KQED News","labelTerm":{"site":"news"},"content":"\u003cp>Stacey Milbern never imagined she'd be making large batches of hand sanitizer in her kitchen.\u003c/p>\n\u003cp>But over the last week, as the spread of the coronavirus has hit the Bay Area — and the world — Milbern and four other volunteers, all of whom identify as disabled, queer people of color, have produced nearly 100 anti-coronavirus kits, and are distributing them to people living in Oakland homeless encampments.\u003c/p>\n\u003cp>Along with the hand sanitizer — which is 90% rubbing alcohol mixed with glycerine and aloe vera — the kits include disinfectant and an emergency vitamin mix, all made from scratch by members of the group in Milbern's East Oakland home (in consultation with a nurse practitioner), as well as an N95 respirator mask and gloves.\u003c/p>\n\u003cp>[pullquote size='medium' align='right' citation=\"Stacey Milbern\"]'Really, what it takes to flatten the curve is collective action and collective commitment. Interdependence is going to be what saves us, and COVID-19 is the extreme example of this.'[/pullquote]\u003c/p>\n\u003cp>\"We are particularly concerned with people in encampments who don’t have access to soap and water,\" said Milbern, who has muscular dystrophy and uses a ventilator to breathe.\u003c/p>\n\u003cp>Many in the disabled community are all too familiar with feeling isolated and surviving in crisis mode, she said, when resources and support are in short supply. Her small group, which calls itself the \u003ca href=\"https://www.facebook.com/disabilityjusticecultureclub/\" target=\"_blank\" rel=\"noopener noreferrer\">Disability Justice Culture Club,\u003c/a> wanted to use that DIY know-how to help their own community and other underserved populations.\u003c/p>\n\u003cp>\"Often times, disabled people have the solutions that society needs. We call it crip — or crippled — wisdom,\" said Milbern, 32, who has a day job as a human resources specialist. \"We know how infections spread and how to properly wear a mask and wash your hands.\"\u003c/p>\n\u003cfigure id=\"attachment_11807092\" class=\"wp-caption alignnone\" style=\"max-width: 900px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2020/03/Image-from-iOS-5-e1584430185736.jpg\">\u003cimg class=\"size-full wp-image-11807092\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/03/Image-from-iOS-5-e1584430185736.jpg\" alt=\"\" width=\"900\" height=\"807\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2020/03/Image-from-iOS-5-e1584430185736.jpg 900w, https://ww2.kqed.org/app/uploads/sites/10/2020/03/Image-from-iOS-5-e1584430185736-160x143.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2020/03/Image-from-iOS-5-e1584430185736-800x717.jpg 800w\" sizes=\"(max-width: 900px) 100vw, 900px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Charley Bowden pours handmade hand sanitizer into small bottles. \u003ccite>(Courtesy of Stacey Milbern)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Milbern said the kits, distributed in partnership with other community groups, have been well received, and now they're struggling to keep up with demand. She said they had hoped to create more than double the number of kits by now, but have had trouble finding enough raw materials at the 30-some stores they've gone to in recent days, where shelves have been swept clean by frantic customers hoarding supplies.\u003c/p>\n\u003cp>\"I think it's really discouraging right now to see that,\" she said, noting that the overwhelming focus seems to be on personal safety, not the well-being of the larger community. \"Really, what it takes to flatten the curve is collective action and collective commitment. Interdependence is going to be what saves us, and COVID-19 is the extreme example of this.”\u003c/p>\n\u003cp>Milbern also has her own health to worry about. She was recently diagnosed with kidney cancer, and on Monday found out that her surgery to remove it, scheduled for later this week, had been postponed because of \u003ca href=\"https://www.kqed.org/science/1957877/live-updates-coronavirus-in-the-san-francisco-bay-area\">shelter-in-place orders\u003c/a>.\u003c/p>\n\u003cp>\"My surgeon said even though my cancer is fast growing, I can survive another 30 days. But I likely wouldn't survive getting coronavirus,\" she said in a text message later that day. \"It didn't hit me it was that serious/deadly to me personally. I'm really worried for myself and [my] disabled friends.\"\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>As the outbreak spreads and services grow scarcer, she said her community is facing the real threat of having limited access to dialysis and other life-saving treatments, and not being able to get the medication and basic necessities they need to survive.\u003c/p>\n\u003cp>Last fall, in the midst of the massive PG&E power shutoffs, KQED wrote about \u003ca href=\"https://www.kqed.org/news/11784435/how-pges-power-shutoffs-sparked-an-east-bay-disability-rights-campaign\">a grassroots mutual aid campaign\u003c/a> that Milbern helped lead to distribute critical supplies to disabled people in the region who had lost their electricity.\u003c/p>\n\u003cfigure id=\"attachment_11807091\" class=\"wp-caption alignnone\" style=\"max-width: 900px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2020/03/Image-from-iOS-4-1-e1584430244322.jpg\">\u003cimg class=\"size-full wp-image-11807091\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/03/Image-from-iOS-4-1-e1584430244322.jpg\" alt=\"\" width=\"900\" height=\"795\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2020/03/Image-from-iOS-4-1-e1584430244322.jpg 900w, https://ww2.kqed.org/app/uploads/sites/10/2020/03/Image-from-iOS-4-1-e1584430244322-160x141.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2020/03/Image-from-iOS-4-1-e1584430244322-800x707.jpg 800w\" sizes=\"(max-width: 900px) 100vw, 900px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">The group's anti-coronavirous kits ready for distribution. \u003ccite>(Courtesy of Stacey Milbern)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>This time around, she said, her group wanted to expand its efforts beyond the disabled community and focus on vulnerable populations more broadly, particularly in low-income communities of color.\u003c/p>\n\u003cp>\"We realized that the people who need us the most, we were still not reaching them,\" she said.\u003c/p>\n\u003cp>[aside label=\"more coronavirus coverage\" tag=\"coronavirus\"]In just the last few days, in addition to distributing kits, the group has also set up another mutual aid effort to provide food and care support to disabled people in need, with close to 30 already requesting assistance, and more than 160 volunteers signed up to help, Milbern said.\u003c/p>\n\u003cp>She acknowledged, though, that the effort is only reaching a tiny fraction of the many people in her community who need the most support and are too often neglected, especially during times of crisis.\u003c/p>\n\u003cp>\"It is such a painful experience to be left behind or disregarded,\" she said. \"I have experienced feeling neglected by systems and society, and I don't want that to continue. If I can use my skills developing care networks to keep someone a little more safe, it was all worth it.\"\u003c/p>\n\u003cp>\u003ci>To receive or provide help, or donate supplies or money, visit the group's \u003ca href=\"https://www.facebook.com/disabilityjusticecultureclub/\">Facebook page\u003c/a>.\u003c/i>\u003c/p>\n\u003cp>\u003ci>Click \u003ca href=\"https://www.oaklandca.gov/resources/list-of-local-programs-and-services-for-people-with-disabilities\" target=\"_blank\" rel=\"noopener noreferrer\">here\u003c/a> and \u003ca href=\"https://www.berkeleypubliclibrary.org/sites/default/files/files/inline/help_with_disabilities_0.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">here\u003c/a> for a list of Bay Area organizations serving people with disabilities.\u003c/i>\u003c/p>\n\u003cp>\u003c/p>\n","blocks":[],"excerpt":"Stacey Milbern and her small collective of disabled activists are making their own hand sanitizers and disinfectants, and are distributing them to people in homeless encampments in Oakland.","status":"publish","parent":0,"modified":1584848928,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":22,"wordCount":867},"headData":{"title":"Coronavirus: How These Disabled Activists Are Taking Matters Into Their Own (Sanitized) Hands | KQED","description":"Stacey Milbern and her small collective of disabled activists are making their own hand sanitizers and disinfectants, and are distributing them to people in homeless encampments in Oakland.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"Coronavirus: How These Disabled Activists Are Taking Matters Into Their Own (Sanitized) Hands","datePublished":"2020-03-17T21:40:33.000Z","dateModified":"2020-03-22T03:48:48.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"Y","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"disqusIdentifier":"11806414 https://ww2.kqed.org/news/?p=11806414","disqusUrl":"https://ww2.kqed.org/news/2020/03/17/coronavirus-how-these-disabled-activists-are-taking-matters-into-their-own-sanitized-hands/","disqusTitle":"Coronavirus: How These Disabled Activists Are Taking Matters Into Their Own (Sanitized) Hands","path":"/news/11806414/coronavirus-how-these-disabled-activists-are-taking-matters-into-their-own-sanitized-hands","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Stacey Milbern never imagined she'd be making large batches of hand sanitizer in her kitchen.\u003c/p>\n\u003cp>But over the last week, as the spread of the coronavirus has hit the Bay Area — and the world — Milbern and four other volunteers, all of whom identify as disabled, queer people of color, have produced nearly 100 anti-coronavirus kits, and are distributing them to people living in Oakland homeless encampments.\u003c/p>\n\u003cp>Along with the hand sanitizer — which is 90% rubbing alcohol mixed with glycerine and aloe vera — the kits include disinfectant and an emergency vitamin mix, all made from scratch by members of the group in Milbern's East Oakland home (in consultation with a nurse practitioner), as well as an N95 respirator mask and gloves.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"'Really, what it takes to flatten the curve is collective action and collective commitment. Interdependence is going to be what saves us, and COVID-19 is the extreme example of this.'","name":"pullquote","attributes":{"named":{"size":"medium","align":"right","citation":"Stacey Milbern","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"We are particularly concerned with people in encampments who don’t have access to soap and water,\" said Milbern, who has muscular dystrophy and uses a ventilator to breathe.\u003c/p>\n\u003cp>Many in the disabled community are all too familiar with feeling isolated and surviving in crisis mode, she said, when resources and support are in short supply. Her small group, which calls itself the \u003ca href=\"https://www.facebook.com/disabilityjusticecultureclub/\" target=\"_blank\" rel=\"noopener noreferrer\">Disability Justice Culture Club,\u003c/a> wanted to use that DIY know-how to help their own community and other underserved populations.\u003c/p>\n\u003cp>\"Often times, disabled people have the solutions that society needs. We call it crip — or crippled — wisdom,\" said Milbern, 32, who has a day job as a human resources specialist. \"We know how infections spread and how to properly wear a mask and wash your hands.\"\u003c/p>\n\u003cfigure id=\"attachment_11807092\" class=\"wp-caption alignnone\" style=\"max-width: 900px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2020/03/Image-from-iOS-5-e1584430185736.jpg\">\u003cimg class=\"size-full wp-image-11807092\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/03/Image-from-iOS-5-e1584430185736.jpg\" alt=\"\" width=\"900\" height=\"807\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2020/03/Image-from-iOS-5-e1584430185736.jpg 900w, https://ww2.kqed.org/app/uploads/sites/10/2020/03/Image-from-iOS-5-e1584430185736-160x143.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2020/03/Image-from-iOS-5-e1584430185736-800x717.jpg 800w\" sizes=\"(max-width: 900px) 100vw, 900px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Charley Bowden pours handmade hand sanitizer into small bottles. \u003ccite>(Courtesy of Stacey Milbern)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Milbern said the kits, distributed in partnership with other community groups, have been well received, and now they're struggling to keep up with demand. She said they had hoped to create more than double the number of kits by now, but have had trouble finding enough raw materials at the 30-some stores they've gone to in recent days, where shelves have been swept clean by frantic customers hoarding supplies.\u003c/p>\n\u003cp>\"I think it's really discouraging right now to see that,\" she said, noting that the overwhelming focus seems to be on personal safety, not the well-being of the larger community. \"Really, what it takes to flatten the curve is collective action and collective commitment. Interdependence is going to be what saves us, and COVID-19 is the extreme example of this.”\u003c/p>\n\u003cp>Milbern also has her own health to worry about. She was recently diagnosed with kidney cancer, and on Monday found out that her surgery to remove it, scheduled for later this week, had been postponed because of \u003ca href=\"https://www.kqed.org/science/1957877/live-updates-coronavirus-in-the-san-francisco-bay-area\">shelter-in-place orders\u003c/a>.\u003c/p>\n\u003cp>\"My surgeon said even though my cancer is fast growing, I can survive another 30 days. But I likely wouldn't survive getting coronavirus,\" she said in a text message later that day. \"It didn't hit me it was that serious/deadly to me personally. I'm really worried for myself and [my] disabled friends.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>As the outbreak spreads and services grow scarcer, she said her community is facing the real threat of having limited access to dialysis and other life-saving treatments, and not being able to get the medication and basic necessities they need to survive.\u003c/p>\n\u003cp>Last fall, in the midst of the massive PG&E power shutoffs, KQED wrote about \u003ca href=\"https://www.kqed.org/news/11784435/how-pges-power-shutoffs-sparked-an-east-bay-disability-rights-campaign\">a grassroots mutual aid campaign\u003c/a> that Milbern helped lead to distribute critical supplies to disabled people in the region who had lost their electricity.\u003c/p>\n\u003cfigure id=\"attachment_11807091\" class=\"wp-caption alignnone\" style=\"max-width: 900px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2020/03/Image-from-iOS-4-1-e1584430244322.jpg\">\u003cimg class=\"size-full wp-image-11807091\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/03/Image-from-iOS-4-1-e1584430244322.jpg\" alt=\"\" width=\"900\" height=\"795\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2020/03/Image-from-iOS-4-1-e1584430244322.jpg 900w, https://ww2.kqed.org/app/uploads/sites/10/2020/03/Image-from-iOS-4-1-e1584430244322-160x141.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2020/03/Image-from-iOS-4-1-e1584430244322-800x707.jpg 800w\" sizes=\"(max-width: 900px) 100vw, 900px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">The group's anti-coronavirous kits ready for distribution. \u003ccite>(Courtesy of Stacey Milbern)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>This time around, she said, her group wanted to expand its efforts beyond the disabled community and focus on vulnerable populations more broadly, particularly in low-income communities of color.\u003c/p>\n\u003cp>\"We realized that the people who need us the most, we were still not reaching them,\" she said.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"label":"more coronavirus coverage ","tag":"coronavirus"},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>In just the last few days, in addition to distributing kits, the group has also set up another mutual aid effort to provide food and care support to disabled people in need, with close to 30 already requesting assistance, and more than 160 volunteers signed up to help, Milbern said.\u003c/p>\n\u003cp>She acknowledged, though, that the effort is only reaching a tiny fraction of the many people in her community who need the most support and are too often neglected, especially during times of crisis.\u003c/p>\n\u003cp>\"It is such a painful experience to be left behind or disregarded,\" she said. \"I have experienced feeling neglected by systems and society, and I don't want that to continue. If I can use my skills developing care networks to keep someone a little more safe, it was all worth it.\"\u003c/p>\n\u003cp>\u003ci>To receive or provide help, or donate supplies or money, visit the group's \u003ca href=\"https://www.facebook.com/disabilityjusticecultureclub/\">Facebook page\u003c/a>.\u003c/i>\u003c/p>\n\u003cp>\u003ci>Click \u003ca href=\"https://www.oaklandca.gov/resources/list-of-local-programs-and-services-for-people-with-disabilities\" target=\"_blank\" rel=\"noopener noreferrer\">here\u003c/a> and \u003ca href=\"https://www.berkeleypubliclibrary.org/sites/default/files/files/inline/help_with_disabilities_0.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">here\u003c/a> for a list of Bay Area organizations serving people with disabilities.\u003c/i>\u003c/p>\n\u003cp>\u003c/p>\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11806414/coronavirus-how-these-disabled-activists-are-taking-matters-into-their-own-sanitized-hands","authors":["1263"],"categories":["news_457","news_8"],"tags":["news_27350","news_21845","news_25262"],"featImg":"news_11807156","label":"news"},"news_11789524":{"type":"posts","id":"news_11789524","meta":{"index":"posts_1591205157","site":"news","id":"11789524","score":null,"sort":[1575489178000]},"guestAuthors":[],"slug":"after-a-freak-accident-ucsf-doctor-finds-insight-into-living-life-and-facing-death","title":"After a Freak Accident, UCSF Doctor Finds Insight Into 'Living Life and Facing Death'","publishDate":1575489178,"format":"standard","headTitle":"KQED News","labelTerm":{},"content":"\u003cp>When BJ Miller was a sophomore at Princeton University, he climbed atop a commuter train that had been parked for the night. What began as a lark took a tragic turn when 11,000 volts of electricity suddenly surged through his body.\u003c/p>\n\u003cp>\"There was a big explosion, a big flash of light, and I was thrown ... quite some distance,\" Miller says. \"My body was literally smoking.\"\u003c/p>\n\u003cp>Miller survived that 1990 accident but lost both legs below the knee and half of one arm. Coming close to death and dealing with pain and disability inspired him to go into medicine and the field of \u003ca href=\"https://www.npr.org/tags/499181710/disability-rights\">disability rights\u003c/a>.\u003c/p>\n\u003cp>As a \u003ca href=\"https://www.npr.org/tags/134950354/palliative-care/archive?date=12-31-2013\">palliative care\u003c/a> physician at UCSF's Cancer Center, \u003ca href=\"https://www.sfchronicle.com/news/article/BJ-Miller-pain-doctor-at-the-Zen-Hospice-Project-2369267.php\">Miller draws on his own experiences\u003c/a> to help people with their physical, emotional and spiritual pain at the end of their lives. His new book, with co-author Shoshana Berger, is \u003cem>A Beginner's Guide to the End: Practical Advice for Living Life and Facing Death.\u003c/em>\u003c/p>\n\u003cp>Miller says it's hard for him to regret the accident that changed his life.\u003c/p>\n\u003cp>\"So much has flowed from it,\" he says. \"If I'm honest, there's a little bit of pride. ... [What] I'm a little proud of is the decision to work with this experience over time, to dig into it, to mine it, to find a creative energy in it.\"\u003c/p>\n\u003chr>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003ch3>\u003cstrong>Interview highlights\u003c/strong>\u003c/h3>\n\u003cp>\u003cstrong>On how growing up with his mother, who had polio, influenced him\u003c/strong>\u003c/p>\n\u003cp>To grow up around disability from a young age, to have that carved into your worldview was, you can imagine, hugely helpful for me as a 19-year-old kid with ostensibly everything going for him. ... To know in your bones that you're on borrowed time with being \"able-bodied\" — I knew that. I didn't have to learn that, and that was a huge advantage. ...\u003c/p>\n\u003cp>In my early childhood, she used crutches and a brace and was extremely physically capable. And then, over time, from the early '80s on, it's just been a very slow decline to the point now where she really requires an electric wheelchair, has a little bit of ability to stand, but not for very long, etc. ...\u003c/p>\n\u003cp>People think you're Jesus because you've gone through something special. They treat you like you've got special knowledge, or they treat you a little bit like Frankenstein. Of course, those two responses are related. Neither of them is accurate. But that's the kind of vibe you can get — a lot of us who have disabilities know very well. And I had seen that. I knew how to read that, thanks to my mother.\u003c/p>\n\u003cp>\u003cstrong>On deciding to pursue palliative medicine \u003c/strong>\u003c/p>\n\u003cp>I started doing a little work [in] arts advocacy and disability rights. But basically ... thanks to the disability rights movement, I realized that disability is not something to be ashamed of. It's not something to overcome, to put behind you — it's something to work with. It doesn't go away. I can't overcome this; it's my daily experience. So instead the compulsion was to work with it — in a professional way that I could make a living. And medicine lit up, theoretically, as a way where I could use these experiences and pay them forward in some way or draw from them — not overcome them and put them behind me.\u003c/p>\n\u003cp>[aside label=\"Related Coverage\" postID=news_11784435,futureofyou_443966,stateofhealth_364223]\u003c/p>\n\u003cp>\u003cstrong>On palliative care and the treatment of suffering \u003c/strong>\u003c/p>\n\u003cp>That's why I think hospice and palliative medicine is so interesting. You don't just treat pain. You treat suffering. Suffering is a multiheaded beast. ... Basically palliative care is the treatment of suffering, versus the rest of medicine as the treatment of disease. ...\u003c/p>\n\u003cp>So what is suffering? Well, suffering, there's a lot of different ways to define it. \u003ca href=\"https://www.bmj.com/content/suppl/2005/07/18/331.7509.DC1\">Cicely Saunders\u003c/a>, the grandmother of hospice work, she called it \"total pain.\" That [it has] a physical component, a psychological and emotional component, a spiritual component. It's a multiheaded entity. One might say it affects how you see yourself. It affects your identity. I've come to understand suffering as a wedge — a gap that opens up in you. The gap between the world you have and the world you want. So, it gets at your desire, it gets at your longing, it gets at what you're lacking.\u003c/p>\n\u003cp>\u003cstrong>On finding the balance between life and death, and joy and sorrow\u003c/strong>\u003c/p>\n\u003cp>Coming out of the back side of the experience of my own injuries, my own brush with death, etc., I came out of there eventually holding life much more loosely. So it didn't teach me to cling to life with my fingernails, that that was the way through. It taught me some adult trick of simultaneously holding on to opposing emotions. ...\u003c/p>\n\u003cp>Grief does this. But anyone who's dealt with pain — chronic pain — when the clouds part even for a moment and you have the absence of pain, it's a stunning feeling. I remember feeling that I really wanted to stay close to that interface between joy and sorrow, between pain and pleasure, between life and death. It felt like such a rich, rich place that I had been forced into. I had to hang out there for a while, but I became a little enamored of it, because from there I could just as easily get to sorrow as I could get to joy. And that to me has felt like a kind of a dexterity or an agility, something very good. ... So death is close by, pain is close by — so is the rest of life. So is the good stuff. That zone, it helps me imagine what my patients are going through, being close to death.\u003c/p>\n\u003cp>\u003cstrong>On how he helps his patients with both their fear of dying and their fear of being dead \u003c/strong>\u003c/p>\n\u003cp>Fear helps point to the things that you care about, the things you love, the things you're afraid to lose. Fear is a big important subject and really requires and demands looking at. The sooner we do, the better, because oftentimes it's not so darn scary. ... It's helpful when patients will confess some fear to me. ... People say, \"Actually I'm afraid of the pain I imagine is going to happen during the dying process.\" So the fear of dying, the fear of the dying process. That's an important distinction, because any hospice and palliative medicine team can do a lot to quell the pain and the sorrow that happens during the dying process. We have medications. We have ways of being with each other. We have ways of positioning your body. There's all sorts of things to do, so suffering is not necessarily part of the dying process. And there's a lot of reassurance. ... We understand that process pretty well, and there's a lot we can do. So that's an important distinction. That's pretty concrete. That's knowable.\u003c/p>\n\u003cp>Now, some of my patients will say, \"That's one thing. But I'm actually afraid of being dead. I'm afraid of being in the ground. I'm afraid of what comes next or whatever else.\" Then my response, of course, is, \"Well, gosh, I don't know what that's like either. But let's think about it. Let's talk about it.\" And when we push on that one, I think most of us can get to a place where we realize that we're not just our bodies — and our bodies, once they're dead, aren't likely to be feeling anything.\u003c/p>\n\u003cp>But when you push on that one, you can open up [about] what is known as [the] modern acronym of FOMO — fear of missing out. That's very often at the heart of people's fear of being dead — like all that they're going to miss. And this idea that the world is going to continue on without them, all the things they're not going to get to see, etc. But if you go there, then what has that done? That has pointed us very squarely to all the things we love and care about. And then that becomes a nice compass for our way forward, how we're going to live until we die. The fear there, the things we are afraid to miss, are the things we really should uptick in terms of our attention now.\u003c/p>\n\u003cp>\u003cem>Sam Briger and Joel Wolfram produced and edited this interview for broadcast. Bridget Bentz, Molly Seavy-Nesper and Deborah Franklin adapted it for the Web.\u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2019 Fresh Air. To see more, visit \u003ca href=\"http://www.npr.org/programs/fresh-air/\">Fresh Air\u003c/a>.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=After+A+Freak+Accident%2C+A+Doctor+Finds+Insight+Into+%27Living+Life+And+Facing+Death%27&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\u003cp>[ad floatright]\u003c/p>\n","blocks":[],"excerpt":"In 1990, BJ Miller was hit with 11,000 volts of electricity. That accident took most of his limbs, but the event and his recovery inspired him to pursue a career as a palliative care physician.","status":"publish","parent":0,"modified":1575499764,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":26,"wordCount":1463},"headData":{"title":"After a Freak Accident, UCSF Doctor Finds Insight Into 'Living Life and Facing Death' | KQED","description":"In 1990, BJ Miller was hit with 11,000 volts of electricity. That accident took most of his limbs, but the event and his recovery inspired him to pursue a career as a palliative care physician.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"After a Freak Accident, UCSF Doctor Finds Insight Into 'Living Life and Facing Death'","datePublished":"2019-12-04T19:52:58.000Z","dateModified":"2019-12-04T22:49:24.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"Y","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"disqusIdentifier":"11789524 https://ww2.kqed.org/news/?p=11789524","disqusUrl":"https://ww2.kqed.org/news/2019/12/04/after-a-freak-accident-ucsf-doctor-finds-insight-into-living-life-and-facing-death/","disqusTitle":"After a Freak Accident, UCSF Doctor Finds Insight Into 'Living Life and Facing Death'","source":"NPR","sourceUrl":"https://www.npr.org/","nprByline":"Terry Gross","nprImageAgency":"Simon & Schuster","nprStoryId":"784401787","nprApiLink":"http://api.npr.org/query?id=784401787&apiKey=MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004","nprHtmlLink":"https://www.npr.org/sections/health-shots/2019/12/03/784401787/after-a-freak-accident-a-doctor-finds-insight-into-living-life-and-facing-death?ft=nprml&f=784401787","nprRetrievedStory":"1","nprPubDate":"Wed, 04 Dec 2019 14:05:00 -0500","nprStoryDate":"Tue, 03 Dec 2019 15:12:00 -0500","nprLastModifiedDate":"Wed, 04 Dec 2019 10:04:02 -0500","nprAudio":"https://ondemand.npr.org/anon.npr-mp3/npr/fa/2019/12/20191203_fa_01.mp3?orgId=427869011&topicId=1128&d=2176&p=13&story=784401787&ft=nprml&f=784401787","nprAudioM3u":"http://api.npr.org/m3u/1784490088-7412ed.m3u?orgId=427869011&topicId=1128&d=2176&p=13&story=784401787&ft=nprml&f=784401787","audioTrackLength":2177,"path":"/news/11789524/after-a-freak-accident-ucsf-doctor-finds-insight-into-living-life-and-facing-death","audioUrl":"https://ondemand.npr.org/anon.npr-mp3/npr/fa/2019/12/20191203_fa_01.mp3?orgId=427869011&topicId=1128&d=2176&p=13&story=784401787&ft=nprml&f=784401787","parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>When BJ Miller was a sophomore at Princeton University, he climbed atop a commuter train that had been parked for the night. What began as a lark took a tragic turn when 11,000 volts of electricity suddenly surged through his body.\u003c/p>\n\u003cp>\"There was a big explosion, a big flash of light, and I was thrown ... quite some distance,\" Miller says. \"My body was literally smoking.\"\u003c/p>\n\u003cp>Miller survived that 1990 accident but lost both legs below the knee and half of one arm. Coming close to death and dealing with pain and disability inspired him to go into medicine and the field of \u003ca href=\"https://www.npr.org/tags/499181710/disability-rights\">disability rights\u003c/a>.\u003c/p>\n\u003cp>As a \u003ca href=\"https://www.npr.org/tags/134950354/palliative-care/archive?date=12-31-2013\">palliative care\u003c/a> physician at UCSF's Cancer Center, \u003ca href=\"https://www.sfchronicle.com/news/article/BJ-Miller-pain-doctor-at-the-Zen-Hospice-Project-2369267.php\">Miller draws on his own experiences\u003c/a> to help people with their physical, emotional and spiritual pain at the end of their lives. His new book, with co-author Shoshana Berger, is \u003cem>A Beginner's Guide to the End: Practical Advice for Living Life and Facing Death.\u003c/em>\u003c/p>\n\u003cp>Miller says it's hard for him to regret the accident that changed his life.\u003c/p>\n\u003cp>\"So much has flowed from it,\" he says. \"If I'm honest, there's a little bit of pride. ... [What] I'm a little proud of is the decision to work with this experience over time, to dig into it, to mine it, to find a creative energy in it.\"\u003c/p>\n\u003chr>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003ch3>\u003cstrong>Interview highlights\u003c/strong>\u003c/h3>\n\u003cp>\u003cstrong>On how growing up with his mother, who had polio, influenced him\u003c/strong>\u003c/p>\n\u003cp>To grow up around disability from a young age, to have that carved into your worldview was, you can imagine, hugely helpful for me as a 19-year-old kid with ostensibly everything going for him. ... To know in your bones that you're on borrowed time with being \"able-bodied\" — I knew that. I didn't have to learn that, and that was a huge advantage. ...\u003c/p>\n\u003cp>In my early childhood, she used crutches and a brace and was extremely physically capable. And then, over time, from the early '80s on, it's just been a very slow decline to the point now where she really requires an electric wheelchair, has a little bit of ability to stand, but not for very long, etc. ...\u003c/p>\n\u003cp>People think you're Jesus because you've gone through something special. They treat you like you've got special knowledge, or they treat you a little bit like Frankenstein. Of course, those two responses are related. Neither of them is accurate. But that's the kind of vibe you can get — a lot of us who have disabilities know very well. And I had seen that. I knew how to read that, thanks to my mother.\u003c/p>\n\u003cp>\u003cstrong>On deciding to pursue palliative medicine \u003c/strong>\u003c/p>\n\u003cp>I started doing a little work [in] arts advocacy and disability rights. But basically ... thanks to the disability rights movement, I realized that disability is not something to be ashamed of. It's not something to overcome, to put behind you — it's something to work with. It doesn't go away. I can't overcome this; it's my daily experience. So instead the compulsion was to work with it — in a professional way that I could make a living. And medicine lit up, theoretically, as a way where I could use these experiences and pay them forward in some way or draw from them — not overcome them and put them behind me.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"label":"Related Coverage ","postid":"news_11784435,futureofyou_443966,stateofhealth_364223"},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cstrong>On palliative care and the treatment of suffering \u003c/strong>\u003c/p>\n\u003cp>That's why I think hospice and palliative medicine is so interesting. You don't just treat pain. You treat suffering. Suffering is a multiheaded beast. ... Basically palliative care is the treatment of suffering, versus the rest of medicine as the treatment of disease. ...\u003c/p>\n\u003cp>So what is suffering? Well, suffering, there's a lot of different ways to define it. \u003ca href=\"https://www.bmj.com/content/suppl/2005/07/18/331.7509.DC1\">Cicely Saunders\u003c/a>, the grandmother of hospice work, she called it \"total pain.\" That [it has] a physical component, a psychological and emotional component, a spiritual component. It's a multiheaded entity. One might say it affects how you see yourself. It affects your identity. I've come to understand suffering as a wedge — a gap that opens up in you. The gap between the world you have and the world you want. So, it gets at your desire, it gets at your longing, it gets at what you're lacking.\u003c/p>\n\u003cp>\u003cstrong>On finding the balance between life and death, and joy and sorrow\u003c/strong>\u003c/p>\n\u003cp>Coming out of the back side of the experience of my own injuries, my own brush with death, etc., I came out of there eventually holding life much more loosely. So it didn't teach me to cling to life with my fingernails, that that was the way through. It taught me some adult trick of simultaneously holding on to opposing emotions. ...\u003c/p>\n\u003cp>Grief does this. But anyone who's dealt with pain — chronic pain — when the clouds part even for a moment and you have the absence of pain, it's a stunning feeling. I remember feeling that I really wanted to stay close to that interface between joy and sorrow, between pain and pleasure, between life and death. It felt like such a rich, rich place that I had been forced into. I had to hang out there for a while, but I became a little enamored of it, because from there I could just as easily get to sorrow as I could get to joy. And that to me has felt like a kind of a dexterity or an agility, something very good. ... So death is close by, pain is close by — so is the rest of life. So is the good stuff. That zone, it helps me imagine what my patients are going through, being close to death.\u003c/p>\n\u003cp>\u003cstrong>On how he helps his patients with both their fear of dying and their fear of being dead \u003c/strong>\u003c/p>\n\u003cp>Fear helps point to the things that you care about, the things you love, the things you're afraid to lose. Fear is a big important subject and really requires and demands looking at. The sooner we do, the better, because oftentimes it's not so darn scary. ... It's helpful when patients will confess some fear to me. ... People say, \"Actually I'm afraid of the pain I imagine is going to happen during the dying process.\" So the fear of dying, the fear of the dying process. That's an important distinction, because any hospice and palliative medicine team can do a lot to quell the pain and the sorrow that happens during the dying process. We have medications. We have ways of being with each other. We have ways of positioning your body. There's all sorts of things to do, so suffering is not necessarily part of the dying process. And there's a lot of reassurance. ... We understand that process pretty well, and there's a lot we can do. So that's an important distinction. That's pretty concrete. That's knowable.\u003c/p>\n\u003cp>Now, some of my patients will say, \"That's one thing. But I'm actually afraid of being dead. I'm afraid of being in the ground. I'm afraid of what comes next or whatever else.\" Then my response, of course, is, \"Well, gosh, I don't know what that's like either. But let's think about it. Let's talk about it.\" And when we push on that one, I think most of us can get to a place where we realize that we're not just our bodies — and our bodies, once they're dead, aren't likely to be feeling anything.\u003c/p>\n\u003cp>But when you push on that one, you can open up [about] what is known as [the] modern acronym of FOMO — fear of missing out. That's very often at the heart of people's fear of being dead — like all that they're going to miss. And this idea that the world is going to continue on without them, all the things they're not going to get to see, etc. But if you go there, then what has that done? That has pointed us very squarely to all the things we love and care about. And then that becomes a nice compass for our way forward, how we're going to live until we die. The fear there, the things we are afraid to miss, are the things we really should uptick in terms of our attention now.\u003c/p>\n\u003cp>\u003cem>Sam Briger and Joel Wolfram produced and edited this interview for broadcast. Bridget Bentz, Molly Seavy-Nesper and Deborah Franklin adapted it for the Web.\u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2019 Fresh Air. To see more, visit \u003ca href=\"http://www.npr.org/programs/fresh-air/\">Fresh Air\u003c/a>.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=After+A+Freak+Accident%2C+A+Doctor+Finds+Insight+Into+%27Living+Life+And+Facing+Death%27&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11789524/after-a-freak-accident-ucsf-doctor-finds-insight-into-living-life-and-facing-death","authors":["byline_news_11789524"],"categories":["news_457","news_8"],"tags":["news_21845","news_18202","news_18509","news_27105","news_922"],"featImg":"news_11789530","label":"source_news_11789524"},"news_11741461":{"type":"posts","id":"news_11741461","meta":{"index":"posts_1591205157","site":"news","id":"11741461","score":null,"sort":[1555950871000]},"guestAuthors":[],"slug":"what-does-it-mean-to-spell-check-your-genetic-code","title":"What Does It Mean to Spell Check Your Genetic Code?","publishDate":1555950871,"format":"audio","headTitle":"The California Report | KQED News","labelTerm":{"term":72,"site":"news"},"content":"\u003cp>Delaney Van Riper’s genes contain an error. Were we to look at her genetic code in a Microsoft Word document, it would be really hard to find the written misspelling. On a single page of that genetic code, just one letter is wrong, but that letter translates into a degenerative nerve condition. The nerves that run to Delaney’s hands and feet are damaged, affecting how she walks and moves and writes and lives. Now Delaney and her parents are among the first to grapple directly with the question: What does it mean to be able to spell check your genetic code?\u003c/p>\n\u003cp>From the moment Delaney was born, her father AJ says, she was a force of energy and motion. He called her a “bowling ball.” She flew around the house, running, pushing, dancing and laughing. That’s why it almost went unnoticed that as a young child, Delaney walked mostly on her tiptoes.\u003c/p>\n\u003cfigure id=\"attachment_11741195\" class=\"wp-caption alignright\" style=\"max-width: 512px\">\u003cimg class=\"size-full wp-image-11741195\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/04/RS36615_Katcher-pic-1-qut-1.jpg\" alt=\"\" width=\"512\" height=\"768\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36615_Katcher-pic-1-qut-1.jpg 512w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36615_Katcher-pic-1-qut-1-160x240.jpg 160w\" sizes=\"(max-width: 512px) 100vw, 512px\">\u003cfigcaption class=\"wp-caption-text\">Delaney Van Riper, age 4, after a day of rough playing. \u003ccite>(Courtesy of Delaney Van Riper)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“One day, the parent side of me switched into the genetic counselor side of me. I was like, ‘Do I have a daughter who toe-walks?’ ” AJ remembers.\u003c/p>\n\u003cp>AJ Van Riper is a genetic counselor, a health care professional with specialized training in medical genetics, who acts as a sort of therapist and adviser for people with genetic disorders. Which is how he knew that when children walk exclusively on their tiptoes, it can be a sign of an underlying genetic disorder.\u003c/p>\n\u003cp>After extensive testing, Delaney, then 7 years old, was diagnosed with CMT, which stands for Charcot-Marie-Tooth and is characterized by progressive muscle degeneration and weakness. It’s a genetic disorder that impacts the nerve signals going to Delaney’s arms and legs. Delaney has muscle atrophy and tightened ligaments, which makes her hands and feet look slightly curved and thin, and makes her prone to tripping and falling.\u003c/p>\n\u003cp>CMT is one of the most common inherited neurological disorders, and over 1,000 genetic misspellings can cause the disorder. But only about 12 people in the world have the exact misspelling that Delaney has, a mutation called “P182L.”\u003c/p>\n\u003cp>When Delaney was a kid, she wore leg braces. She says she felt bionic.\u003c/p>\n\u003cp>“When you’re young, you want to be cool, different from everybody else,” Delaney says. “I was different from everybody else, but eventually it became not in a good way.”\u003c/p>\n\u003cp>As she grew, Delaney started to trip and fall more often. When she hit puberty, her hands started to weaken. She became more aware of these snagging limitations on her body. She could no longer hold a pencil. The teenagers around her noticed. A parade of negative thoughts took over, she says, led by “Why me?”\u003c/p>\n\u003cp>Neither of Delaney’s parents has CMT. Rather than being hereditary, as is common, her disorder was a unique mutation in her DNA. Delaney recognized during those difficult teenage years that she had nobody to blame for her disorder, but that just forced her anger inward. She isolated herself and became depressed, even veered into self-harm.\u003c/p>\n\u003cfigure id=\"attachment_11741197\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003cimg class=\"size-full wp-image-11741197\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/04/RS36617_Katcher-pic-3-qut.jpg\" alt=\"\" width=\"1920\" height=\"1371\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36617_Katcher-pic-3-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36617_Katcher-pic-3-qut-160x114.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36617_Katcher-pic-3-qut-800x571.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36617_Katcher-pic-3-qut-1020x728.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36617_Katcher-pic-3-qut-1200x857.jpg 1200w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003cfigcaption class=\"wp-caption-text\">Delaney’s father AJ, second from left, is a genetic counselor. Delaney is second from right, age 16. \u003ccite>(Courtesy of Delaney Van Riper)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Through personal writing, Delaney began to come to terms with the genetic hand she was dealt. At age 16, she wrote about her depression and her disorder in a magazine called CMTeen:\u003c/p>\n\u003cblockquote>\u003cp>I’ve not yet won my war... I am repairing myself. I can feel when the bad days are coming and I prepare. I survive my struggles because I have done so for 10 years. Each day for 10 years, I woke up and got out of bed. Why not try for 10 more? I know I can do this.\u003c/p>\u003c/blockquote>\n\u003cp>Delaney found solace in the fact that her disorder is, as she calls it, “a fluke,” that neither she nor her parents had any fault in the matter. She had to let go of her desire to be anything but herself. Delaney tells me now, “I had to accept that this is going to be my life for as long as I know.”\u003c/p>\n\u003cp>Delaney is now 20 years old, a sophomore at UC Santa Cruz, studying literature. When Delaney was 17, she was surprised by an email from a Bay Area scientist, Dr. Bruce Conklin. He was looking to find patients for a study, people with CMT, especially the incredibly rare kind of CMT that Delaney has. Conklin hoped to one day remove the genetic mutation from patients’ bodies.\u003c/p>\n\u003cp>“It was presented as a possible research study that, if everything goes well, it could be a cure, but also to be realistic at the same time,” Delaney says. Her feelings about herself and her CMT shifted again. “The worst that could happen is I just kind of stay the same.”\u003c/p>\n\u003cp>Conklin is a professor at UCSF and senior investigator at San Francisco’s Gladstone Institutes, which is partnered with CRISPR pioneer Jennifer Doudna and The Innovative Genomics Institute. Delaney is now one of a handful of patients who are part of Conklin’s study.\u003c/p>\n\u003cfigure id=\"attachment_11741198\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003cimg class=\"size-full wp-image-11741198\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/04/RS36618_Katcher-pic-4-qut.jpg\" alt=\"\" width=\"1920\" height=\"1282\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36618_Katcher-pic-4-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36618_Katcher-pic-4-qut-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36618_Katcher-pic-4-qut-800x534.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36618_Katcher-pic-4-qut-1020x681.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36618_Katcher-pic-4-qut-1200x801.jpg 1200w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003cfigcaption class=\"wp-caption-text\">Dr. Bruce Conklin in his lab at Gladstone Institutes. \u003ccite>(Courtesy of Gladstone Institutes)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Conklin calls his practice “gene surgery” both because it’s an anatomical removal of something, just on a genome scale, and because he considers surgery to be a process toward eradicating a disease.\u003c/p>\n\u003cp>“When people did the first heart transplant, they didn't think about how to monetize the 10th heart transplant,” Conklin says. “They thought about how to make the next patient live a little bit longer, the next patient live a bit longer.”\u003c/p>\n\u003cp>He says that his practice is like the beginning stages of transplant surgery, working out the steps in what might someday become common practice.\u003c/p>\n\u003cp>Not all gene surgery is created equal, in terms of how scientists measure its potential risks. Conklin’s lab focuses its efforts on somatic gene editing, as opposed to germline editing. Germline editing was controversially employed in 2018 by Chinese scientist He Jiankui, who edited the genome in human embryos and implanted them in a woman who gave birth to twins.\u003c/p>\n\u003caside class=\"pullquote alignleft\">'[Gene editing] is not easy to do safely and ethically, but it's remarkably easy to do'\u003ccite>Dr. Bruce Conklin, professor at UCSF\u003c/cite>\u003c/aside>\n\u003cp>Germline editing involves editing a human embryo, which affects every single cell in the developing embryo’s body, and these edits will be passed to future generations. Somatic editing, on the other hand, affects only the type of cell that is edited, only in one person’s body, and the changes cannot be inherited by future generations.\u003c/p>\n\u003cp>In March, a committee of the World Health Organization assembled after the controversy to review the state of human genome editing projects.\u003c/p>\n\u003cp>“The committee agrees that it is irresponsible at this time for anyone to proceed with clinical applications of human germline genome editing,” a committee co-chairwoman, Dr. Margaret Hamburg, said in a press briefing.\u003c/p>\n\u003cp>The committee also resolved that all human gene-editing projects should be listed in a mandatory global registry.\u003c/p>\n\u003cp>The field is progressing more quickly than most scientists could have predicted, Conklin says.\u003c/p>\n\u003cp>“[Gene editing] is not easy to do safely and ethically, but it's remarkably easy to do,\" he says. “The thing that really shocked people about the unethical experiment in China was that the added costs, in addition to the in vitro fertilization, which already was going on, was only about $500.”\u003c/p>\n\u003cp>There are roughly 6,000 disorders that involve a mutation on just one gene. Conklin is starting with rare diseases like CMT. Biotech companies are focused on more common disorders whose gene editing therapies can be monetized more easily.\u003c/p>\n\u003cfigure id=\"attachment_11741199\" class=\"wp-caption alignright\" style=\"max-width: 1538px\">\u003cimg class=\"size-full wp-image-11741199\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/04/RS36619_Katcher-pic-5-qut-1.jpg\" alt=\"\" width=\"1538\" height=\"2048\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36619_Katcher-pic-5-qut-1.jpg 1538w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36619_Katcher-pic-5-qut-1-160x213.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36619_Katcher-pic-5-qut-1-800x1065.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36619_Katcher-pic-5-qut-1-1020x1358.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36619_Katcher-pic-5-qut-1-901x1200.jpg 901w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36619_Katcher-pic-5-qut-1-1920x2556.jpg 1920w\" sizes=\"(max-width: 1538px) 100vw, 1538px\">\u003cfigcaption class=\"wp-caption-text\">During her senior year of high school, Delaney Van Riper visited her donated cells at Gladstone Institutes. \u003ccite>(Courtesy of Delaney Van Riper)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“It leaves the vast majority, probably 98% of the diseases essentially to us to work on. I think that that's fine,” Conklin says. “We just have to seize the moment.”\u003c/p>\n\u003cp>But just because a disease is rare doesn’t mean it’s not worth editing. Actually, Conklin sees the study of rare disorders like CMT to be a critical part of moving gene editing forward. He’s starting with CMT in part because editing this particular genetic disorder is straightforward.\u003c/p>\n\u003cp>Our chromosomes carry two copies of every gene, and only one copy of Delaney's gene has a typo. Editing that typo just involves cutting away part of the genome, not replacing it, which is a much more complicated process.\u003c/p>\n\u003cp>“With Delaney, we know exactly the genome to edit,” Dr. Conklin says. “We know that we can edit it. We know roughly how to deliver it.”\u003c/p>\n\u003cp>There’s an ethical conflict that Delaney believes is worth exploring now, one that is inherent in any gene-editing process. Who decides what needs to be edited, and what psychological harm might it do to frame genetic disorders as mistakes to be fixed?\u003c/p>\n\u003cp>Indeed, the entire framework of gene editing is infused with the sense that editing is \"fixing.\" It’s finding an error in the genetic code and correcting that error. Fixing is part of her family’s hope for an “easier” life for her. Both of her parents say that they wish they could go back in time and remove the disorder from her genes.\u003c/p>\n\u003caside class=\"pullquote alignleft\">'I would definitely edit my genes. I've learned my lessons, I think. I know who I am as a person, and I just don't want my life to be as difficult as it has to be.'\u003ccite>Delaney Van Riper, who has CMT, a neurological disorder.\u003c/cite>\u003c/aside>\n\u003cp>“If I had the power to go back on a time machine and touch your shoulder and lift CMT out of you, I would do it in a heartbeat,” AJ tells Delaney during an interview in their Sacramento home.\u003c/p>\n\u003cp>Delaney responds that CMT is a deeply important part of who she is, including the depression and self-harm it caused. She attributes her strength to the error in her genes.\u003c/p>\n\u003cp>“You're not really fixing us,” Delaney says. “I know it's the easiest way for people to understand, but there's nothing really to fix.”\u003c/p>\n\u003cp>Still, as proud and secure as Delaney has become with her disorder, she now wants to edit it out.\u003c/p>\n\u003cp>“I would definitely edit my genes,” she says. “I've learned my lessons, I think. I know who I am as a person, and I just don't want my life to be as difficult as it has to be.”\u003c/p>\n\u003cp>It’s complicated, Delaney realizes. But most important to her is that gene editing be framed as a choice for people with disabilities, rather than assuming everyone would want their genes edited.\u003c/p>\n\u003cp>“It's not all negative. It's not all sad. And just because I have it doesn't mean I can be less happy in life. It just means my life is more difficult,” Delaney tells me. Then she adds, “But difficulty doesn't always equal sadness.”\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n","blocks":[],"excerpt":"Delaney Van Riper has a rare genetic disorder called CMT that impacts the nerve signals going to her arms and legs. She has muscle atrophy and tightened ligaments, which makes her prone to tripping and falling. Doctors are using the gene-editing technology known as CRISPR to snip out the mutation in her DNA.","status":"publish","parent":0,"modified":1555950871,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":42,"wordCount":1932},"headData":{"title":"What Does It Mean to Spell Check Your Genetic Code? | KQED","description":"Delaney Van Riper has a rare genetic disorder called CMT that impacts the nerve signals going to her arms and legs. She has muscle atrophy and tightened ligaments, which makes her prone to tripping and falling. Doctors are using the gene-editing technology known as CRISPR to snip out the mutation in her DNA.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"NewsArticle","headline":"What Does It Mean to Spell Check Your Genetic Code?","datePublished":"2019-04-22T16:34:31.000Z","dateModified":"2019-04-22T16:34:31.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png","isAccessibleForFree":"Y","publisher":{"@type":"NewsMediaOrganization","@id":"https://www.kqed.org/#organization","name":"KQED","url":"https://www.kqed.org","logo":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}}},"disqusIdentifier":"11741461 https://ww2.kqed.org/news/?p=11741461","disqusUrl":"https://ww2.kqed.org/news/2019/04/22/what-does-it-mean-to-spell-check-your-genetic-code/","disqusTitle":"What Does It Mean to Spell Check Your Genetic Code?","audioUrl":"https://www.kqed.org/.stream/anon/radio/tcrmag/2019/04/TCRMAG20190419C.mp3","nprByline":"Margaret Katcher","audioTrackLength":386,"path":"/news/11741461/what-does-it-mean-to-spell-check-your-genetic-code","audioDuration":386000,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Delaney Van Riper’s genes contain an error. Were we to look at her genetic code in a Microsoft Word document, it would be really hard to find the written misspelling. On a single page of that genetic code, just one letter is wrong, but that letter translates into a degenerative nerve condition. The nerves that run to Delaney’s hands and feet are damaged, affecting how she walks and moves and writes and lives. Now Delaney and her parents are among the first to grapple directly with the question: What does it mean to be able to spell check your genetic code?\u003c/p>\n\u003cp>From the moment Delaney was born, her father AJ says, she was a force of energy and motion. He called her a “bowling ball.” She flew around the house, running, pushing, dancing and laughing. That’s why it almost went unnoticed that as a young child, Delaney walked mostly on her tiptoes.\u003c/p>\n\u003cfigure id=\"attachment_11741195\" class=\"wp-caption alignright\" style=\"max-width: 512px\">\u003cimg class=\"size-full wp-image-11741195\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/04/RS36615_Katcher-pic-1-qut-1.jpg\" alt=\"\" width=\"512\" height=\"768\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36615_Katcher-pic-1-qut-1.jpg 512w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36615_Katcher-pic-1-qut-1-160x240.jpg 160w\" sizes=\"(max-width: 512px) 100vw, 512px\">\u003cfigcaption class=\"wp-caption-text\">Delaney Van Riper, age 4, after a day of rough playing. \u003ccite>(Courtesy of Delaney Van Riper)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“One day, the parent side of me switched into the genetic counselor side of me. I was like, ‘Do I have a daughter who toe-walks?’ ” AJ remembers.\u003c/p>\n\u003cp>AJ Van Riper is a genetic counselor, a health care professional with specialized training in medical genetics, who acts as a sort of therapist and adviser for people with genetic disorders. Which is how he knew that when children walk exclusively on their tiptoes, it can be a sign of an underlying genetic disorder.\u003c/p>\n\u003cp>After extensive testing, Delaney, then 7 years old, was diagnosed with CMT, which stands for Charcot-Marie-Tooth and is characterized by progressive muscle degeneration and weakness. It’s a genetic disorder that impacts the nerve signals going to Delaney’s arms and legs. Delaney has muscle atrophy and tightened ligaments, which makes her hands and feet look slightly curved and thin, and makes her prone to tripping and falling.\u003c/p>\n\u003cp>CMT is one of the most common inherited neurological disorders, and over 1,000 genetic misspellings can cause the disorder. But only about 12 people in the world have the exact misspelling that Delaney has, a mutation called “P182L.”\u003c/p>\n\u003cp>When Delaney was a kid, she wore leg braces. She says she felt bionic.\u003c/p>\n\u003cp>“When you’re young, you want to be cool, different from everybody else,” Delaney says. “I was different from everybody else, but eventually it became not in a good way.”\u003c/p>\n\u003cp>As she grew, Delaney started to trip and fall more often. When she hit puberty, her hands started to weaken. She became more aware of these snagging limitations on her body. She could no longer hold a pencil. The teenagers around her noticed. A parade of negative thoughts took over, she says, led by “Why me?”\u003c/p>\n\u003cp>Neither of Delaney’s parents has CMT. Rather than being hereditary, as is common, her disorder was a unique mutation in her DNA. Delaney recognized during those difficult teenage years that she had nobody to blame for her disorder, but that just forced her anger inward. She isolated herself and became depressed, even veered into self-harm.\u003c/p>\n\u003cfigure id=\"attachment_11741197\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003cimg class=\"size-full wp-image-11741197\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/04/RS36617_Katcher-pic-3-qut.jpg\" alt=\"\" width=\"1920\" height=\"1371\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36617_Katcher-pic-3-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36617_Katcher-pic-3-qut-160x114.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36617_Katcher-pic-3-qut-800x571.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36617_Katcher-pic-3-qut-1020x728.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36617_Katcher-pic-3-qut-1200x857.jpg 1200w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003cfigcaption class=\"wp-caption-text\">Delaney’s father AJ, second from left, is a genetic counselor. Delaney is second from right, age 16. \u003ccite>(Courtesy of Delaney Van Riper)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Through personal writing, Delaney began to come to terms with the genetic hand she was dealt. At age 16, she wrote about her depression and her disorder in a magazine called CMTeen:\u003c/p>\n\u003cblockquote>\u003cp>I’ve not yet won my war... I am repairing myself. I can feel when the bad days are coming and I prepare. I survive my struggles because I have done so for 10 years. Each day for 10 years, I woke up and got out of bed. Why not try for 10 more? I know I can do this.\u003c/p>\u003c/blockquote>\n\u003cp>Delaney found solace in the fact that her disorder is, as she calls it, “a fluke,” that neither she nor her parents had any fault in the matter. She had to let go of her desire to be anything but herself. Delaney tells me now, “I had to accept that this is going to be my life for as long as I know.”\u003c/p>\n\u003cp>Delaney is now 20 years old, a sophomore at UC Santa Cruz, studying literature. When Delaney was 17, she was surprised by an email from a Bay Area scientist, Dr. Bruce Conklin. He was looking to find patients for a study, people with CMT, especially the incredibly rare kind of CMT that Delaney has. Conklin hoped to one day remove the genetic mutation from patients’ bodies.\u003c/p>\n\u003cp>“It was presented as a possible research study that, if everything goes well, it could be a cure, but also to be realistic at the same time,” Delaney says. Her feelings about herself and her CMT shifted again. “The worst that could happen is I just kind of stay the same.”\u003c/p>\n\u003cp>Conklin is a professor at UCSF and senior investigator at San Francisco’s Gladstone Institutes, which is partnered with CRISPR pioneer Jennifer Doudna and The Innovative Genomics Institute. Delaney is now one of a handful of patients who are part of Conklin’s study.\u003c/p>\n\u003cfigure id=\"attachment_11741198\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003cimg class=\"size-full wp-image-11741198\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/04/RS36618_Katcher-pic-4-qut.jpg\" alt=\"\" width=\"1920\" height=\"1282\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36618_Katcher-pic-4-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36618_Katcher-pic-4-qut-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36618_Katcher-pic-4-qut-800x534.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36618_Katcher-pic-4-qut-1020x681.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36618_Katcher-pic-4-qut-1200x801.jpg 1200w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003cfigcaption class=\"wp-caption-text\">Dr. Bruce Conklin in his lab at Gladstone Institutes. \u003ccite>(Courtesy of Gladstone Institutes)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Conklin calls his practice “gene surgery” both because it’s an anatomical removal of something, just on a genome scale, and because he considers surgery to be a process toward eradicating a disease.\u003c/p>\n\u003cp>“When people did the first heart transplant, they didn't think about how to monetize the 10th heart transplant,” Conklin says. “They thought about how to make the next patient live a little bit longer, the next patient live a bit longer.”\u003c/p>\n\u003cp>He says that his practice is like the beginning stages of transplant surgery, working out the steps in what might someday become common practice.\u003c/p>\n\u003cp>Not all gene surgery is created equal, in terms of how scientists measure its potential risks. Conklin’s lab focuses its efforts on somatic gene editing, as opposed to germline editing. Germline editing was controversially employed in 2018 by Chinese scientist He Jiankui, who edited the genome in human embryos and implanted them in a woman who gave birth to twins.\u003c/p>\n\u003caside class=\"pullquote alignleft\">'[Gene editing] is not easy to do safely and ethically, but it's remarkably easy to do'\u003ccite>Dr. Bruce Conklin, professor at UCSF\u003c/cite>\u003c/aside>\n\u003cp>Germline editing involves editing a human embryo, which affects every single cell in the developing embryo’s body, and these edits will be passed to future generations. Somatic editing, on the other hand, affects only the type of cell that is edited, only in one person’s body, and the changes cannot be inherited by future generations.\u003c/p>\n\u003cp>In March, a committee of the World Health Organization assembled after the controversy to review the state of human genome editing projects.\u003c/p>\n\u003cp>“The committee agrees that it is irresponsible at this time for anyone to proceed with clinical applications of human germline genome editing,” a committee co-chairwoman, Dr. Margaret Hamburg, said in a press briefing.\u003c/p>\n\u003cp>The committee also resolved that all human gene-editing projects should be listed in a mandatory global registry.\u003c/p>\n\u003cp>The field is progressing more quickly than most scientists could have predicted, Conklin says.\u003c/p>\n\u003cp>“[Gene editing] is not easy to do safely and ethically, but it's remarkably easy to do,\" he says. “The thing that really shocked people about the unethical experiment in China was that the added costs, in addition to the in vitro fertilization, which already was going on, was only about $500.”\u003c/p>\n\u003cp>There are roughly 6,000 disorders that involve a mutation on just one gene. Conklin is starting with rare diseases like CMT. Biotech companies are focused on more common disorders whose gene editing therapies can be monetized more easily.\u003c/p>\n\u003cfigure id=\"attachment_11741199\" class=\"wp-caption alignright\" style=\"max-width: 1538px\">\u003cimg class=\"size-full wp-image-11741199\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/04/RS36619_Katcher-pic-5-qut-1.jpg\" alt=\"\" width=\"1538\" height=\"2048\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36619_Katcher-pic-5-qut-1.jpg 1538w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36619_Katcher-pic-5-qut-1-160x213.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36619_Katcher-pic-5-qut-1-800x1065.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36619_Katcher-pic-5-qut-1-1020x1358.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36619_Katcher-pic-5-qut-1-901x1200.jpg 901w, https://ww2.kqed.org/app/uploads/sites/10/2019/04/RS36619_Katcher-pic-5-qut-1-1920x2556.jpg 1920w\" sizes=\"(max-width: 1538px) 100vw, 1538px\">\u003cfigcaption class=\"wp-caption-text\">During her senior year of high school, Delaney Van Riper visited her donated cells at Gladstone Institutes. \u003ccite>(Courtesy of Delaney Van Riper)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“It leaves the vast majority, probably 98% of the diseases essentially to us to work on. I think that that's fine,” Conklin says. “We just have to seize the moment.”\u003c/p>\n\u003cp>But just because a disease is rare doesn’t mean it’s not worth editing. Actually, Conklin sees the study of rare disorders like CMT to be a critical part of moving gene editing forward. He’s starting with CMT in part because editing this particular genetic disorder is straightforward.\u003c/p>\n\u003cp>Our chromosomes carry two copies of every gene, and only one copy of Delaney's gene has a typo. Editing that typo just involves cutting away part of the genome, not replacing it, which is a much more complicated process.\u003c/p>\n\u003cp>“With Delaney, we know exactly the genome to edit,” Dr. Conklin says. “We know that we can edit it. We know roughly how to deliver it.”\u003c/p>\n\u003cp>There’s an ethical conflict that Delaney believes is worth exploring now, one that is inherent in any gene-editing process. Who decides what needs to be edited, and what psychological harm might it do to frame genetic disorders as mistakes to be fixed?\u003c/p>\n\u003cp>Indeed, the entire framework of gene editing is infused with the sense that editing is \"fixing.\" It’s finding an error in the genetic code and correcting that error. Fixing is part of her family’s hope for an “easier” life for her. Both of her parents say that they wish they could go back in time and remove the disorder from her genes.\u003c/p>\n\u003caside class=\"pullquote alignleft\">'I would definitely edit my genes. I've learned my lessons, I think. I know who I am as a person, and I just don't want my life to be as difficult as it has to be.'\u003ccite>Delaney Van Riper, who has CMT, a neurological disorder.\u003c/cite>\u003c/aside>\n\u003cp>“If I had the power to go back on a time machine and touch your shoulder and lift CMT out of you, I would do it in a heartbeat,” AJ tells Delaney during an interview in their Sacramento home.\u003c/p>\n\u003cp>Delaney responds that CMT is a deeply important part of who she is, including the depression and self-harm it caused. She attributes her strength to the error in her genes.\u003c/p>\n\u003cp>“You're not really fixing us,” Delaney says. “I know it's the easiest way for people to understand, but there's nothing really to fix.”\u003c/p>\n\u003cp>Still, as proud and secure as Delaney has become with her disorder, she now wants to edit it out.\u003c/p>\n\u003cp>“I would definitely edit my genes,” she says. “I've learned my lessons, I think. I know who I am as a person, and I just don't want my life to be as difficult as it has to be.”\u003c/p>\n\u003cp>It’s complicated, Delaney realizes. But most important to her is that gene editing be framed as a choice for people with disabilities, rather than assuming everyone would want their genes edited.\u003c/p>\n\u003cp>“It's not all negative. It's not all sad. And just because I have it doesn't mean I can be less happy in life. It just means my life is more difficult,” Delaney tells me. Then she adds, “But difficulty doesn't always equal sadness.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11741461/what-does-it-mean-to-spell-check-your-genetic-code","authors":["byline_news_11741461"],"programs":["news_72"],"categories":["news_457","news_8","news_356"],"tags":["news_17841","news_21845"],"featImg":"news_11741196","label":"news_72"}},"programsReducer":{"possible":{"id":"possible","title":"Possible","info":"Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. 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But is this once sleepy suburb ready for them?","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/American-Suburb-Podcast-Tile-703x703-1.jpg","officialWebsiteLink":"/news/series/american-suburb-podcast","meta":{"site":"news","source":"kqed","order":"13"},"link":"/news/series/american-suburb-podcast/","subscribe":{"npr":"https://rpb3r.app.goo.gl/RBrW","apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?mt=2&id=1287748328","tuneIn":"https://tunein.com/radio/American-Suburb-p1086805/","rss":"https://ww2.kqed.org/news/series/american-suburb-podcast/feed/podcast","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkMzMDExODgxNjA5"}},"baycurious":{"id":"baycurious","title":"Bay Curious","tagline":"Exploring the Bay Area, one question at a time","info":"KQED’s new podcast, Bay Curious, gets to the bottom of the mysteries — both profound and peculiar — that give the Bay Area its unique identity. And we’ll do it with your help! You ask the questions. You decide what Bay Curious investigates. And you join us on the journey to find the answers.","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Bay-Curious-Podcast-Tile-703x703-1.jpg","imageAlt":"\"KQED Bay Curious","officialWebsiteLink":"/news/series/baycurious","meta":{"site":"news","source":"kqed","order":"4"},"link":"/podcasts/baycurious","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/bay-curious/id1172473406","npr":"https://www.npr.org/podcasts/500557090/bay-curious","rss":"https://ww2.kqed.org/news/category/bay-curious-podcast/feed/podcast","google":"https://podcasts.google.com/feed/aHR0cHM6Ly93dzIua3FlZC5vcmcvbmV3cy9jYXRlZ29yeS9iYXktY3VyaW91cy1wb2RjYXN0L2ZlZWQvcG9kY2FzdA","stitcher":"https://www.stitcher.com/podcast/kqed/bay-curious","spotify":"https://open.spotify.com/show/6O76IdmhixfijmhTZLIJ8k"}},"bbc-world-service":{"id":"bbc-world-service","title":"BBC World Service","info":"The day's top stories from BBC News compiled twice daily in the week, once at weekends.","airtime":"MON-FRI 9pm-10pm, TUE-FRI 1am-2am","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/BBC-World-Service-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.bbc.co.uk/sounds/play/live:bbc_world_service","meta":{"site":"news","source":"BBC World Service"},"link":"/radio/program/bbc-world-service","subscribe":{"apple":"https://itunes.apple.com/us/podcast/global-news-podcast/id135067274?mt=2","tuneIn":"https://tunein.com/radio/BBC-World-Service-p455581/","rss":"https://podcasts.files.bbci.co.uk/p02nq0gn.rss"}},"code-switch-life-kit":{"id":"code-switch-life-kit","title":"Code Switch / Life Kit","info":"\u003cem>Code Switch\u003c/em>, which listeners will hear in the first part of the hour, has fearless and much-needed conversations about race. Hosted by journalists of color, the show tackles the subject of race head-on, exploring how it impacts every part of society — from politics and pop culture to history, sports and more.\u003cbr />\u003cbr />\u003cem>Life Kit\u003c/em>, which will be in the second part of the hour, guides you through spaces and feelings no one prepares you for — from finances to mental health, from workplace microaggressions to imposter syndrome, from relationships to parenting. The show features experts with real world experience and shares their knowledge. Because everyone needs a little help being human.\u003cbr />\u003cbr />\u003ca href=\"https://www.npr.org/podcasts/510312/codeswitch\">\u003cem>Code Switch\u003c/em> offical site and podcast\u003c/a>\u003cbr />\u003ca href=\"https://www.npr.org/lifekit\">\u003cem>Life Kit\u003c/em> offical site and podcast\u003c/a>\u003cbr />","airtime":"SUN 9pm-10pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Code-Switch-Life-Kit-Podcast-Tile-360x360-1.jpg","meta":{"site":"radio","source":"npr"},"link":"/radio/program/code-switch-life-kit","subscribe":{"apple":"https://podcasts.apple.com/podcast/1112190608?mt=2&at=11l79Y&ct=nprdirectory","google":"https://podcasts.google.com/feed/aHR0cHM6Ly93d3cubnByLm9yZy9yc3MvcG9kY2FzdC5waHA_aWQ9NTEwMzEy","spotify":"https://open.spotify.com/show/3bExJ9JQpkwNhoHvaIIuyV","rss":"https://feeds.npr.org/510312/podcast.xml"}},"commonwealth-club":{"id":"commonwealth-club","title":"Commonwealth Club of California Podcast","info":"The Commonwealth Club of California is the nation's oldest and largest public affairs forum. 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