【聊了什么 The What】
本期《残言片语》，主播仁慈和八如邀请的嘉宾，从听众席走到了麦克风前。Jayne目前在加州工作，同时还是一名长期与前庭性偏头痛共处的人。她没有典型的剧烈头痛，却会在某些时刻突然眩晕、脑雾、失去行动与工作的能力。从11岁被反复误诊，到成年后在学校、职场和美国医疗体系里不断自证，本期节目顺着她的故事，聊到了女性的痛为什么总是不被相信，慢性病如何悄悄改变人生选择，以及当制度跟不上身体时，人类只能如何硬撑。也希望听众可以与我们一起思考，当痛苦隐形的时候，我们还能不能够，又该如何继续彼此相信，彼此支持?
In this episode of Disabled Talks, Hosts Merci and Baru invite a guest who steps out of the audience and up to the microphone. Jayne, who currently works in California, is also someone who has been living with vestibular migraine. She doesn’t experience the stereotypical intense head pain, but instead faces sudden vertigo, brain fog, and moments of losing the ability to move or work. From repeated misdiagnoses at age eleven to constantly having to prove herself in school, the workplace, and the U.S. healthcare system as an adult, her story opens up a larger conversation about why women’s pain is so often doubted, how chronic illness quietly reshapes life choices, and what it means to keep pushing forward when systems fail to meet our bodies. We also invite listeners to think with us: when suffering is invisible, can we still learn how to believe in one another and support each other?
【时间轴 The When】
* 00:00:00｜偏头痛，不只是“头痛那么简单”
* 00:01:55｜没有头痛，却彻底失能：前庭性偏头痛是什么？
* 00:03:12｜被误解的偏头痛症状全谱：脑雾、视觉雪花、失语
* 00:05:37｜吃了药也不一定好：偏头痛的真实用药困境
* 00:09:29｜误诊、耳聋与被当作“励志榜样”
* 00:14:17｜留学与职场：慢性病如何悄悄重塑你的一生选择
* 00:19:39｜开车时突然“雪花屏”：隐形残障的危险瞬间
* 00:21:54｜为什么确诊这么难？美国医疗系统的推皮球
* 00:32:18｜为什么女性的痛总是不被相信？
* 00:47:51｜如果学校和职场真的理解慢性病，会长什么样？
* 01:00:59｜互助、命名与不孤独：我们为什么要关注隐形残障
* 00:00:00｜Migraine Is More Than “Just a Headache”
* 00:01:55｜No Headache, Yet Completely Disabled: What Is Vestibular Migraine?
* 00:03:12｜The Full, Misunderstood Spectrum of Migraine Symptoms: Brain Fog, Visual Snow, Aphasia
* 00:05:37｜Medication Doesn’t Always Work: The Real Treatment Dilemma of Migraine
* 00:09:29｜Misdiagnosis, Hearing Loss, and Being Turned into an “Inspirational Example”
* 00:14:17｜Study Abroad and the Workplace: How Chronic Illness Quietly Reshapes Life Choices
* 00:19:39｜“Visual Snow” While Driving: A Dangerous Moment of Invisible Disability
* 00:21:54｜Why Is Diagnosis So Hard? Being Passed Around in the U.S. Healthcare System
* 00:32:18｜Why Is Women’s Pain So Often Disbelieved?
* 00:47:51｜What Would Schools and Workplaces Look Like If They Truly Understood Chronic Illness?
* 01:00:59｜Mutual Aid, Naming, and Not Being Alone: Why Invisible Disability Matters
【我们是谁 Who We Are】
残言片语是一档用残障视角看主流问题的中文播客。残障是人类无法逃避的脆弱性问题，我们致力于在日常生活和社会热点中搜寻被忽视的残障视角，期待和观众一起挑战刻板印象，打击健全中心主义（Ableism），从而真诚地感知、理解、创造自己与世界。
“Disabled Talks” is a Chinese podcast that explores mainstream issues through a disability lens, recognizing disability as an unavoidable aspect of human vulnerability often overlooked in mainstream discussions. Our mission is to uncover overlooked disability perspectives in everyday life and current events, challenge stereotypes, combat ableism alongside our audience, and foster genuine ways to perceive, understand, and shape ourselves and the world. Join us in reimagining societal narratives through the vital prism of disability experience.
* 仁慈：假肢使用者，残障研究者，过气网红。
* 八如：INFJ听人，艺术家兼美国聋校教师。
* Jayne：与前庭偏头痛和单侧听损共存二十年，工程师/Life Coach/女性主义社群主理人。
* Renci: Prosthetic user, disability studies researcher, former influencer
* Baru: Hearing artist, Teacher of the Deaf and Hard of Hearing, INFJ personality.
* Jayne：20 years of co-existing with vestibular migraine and unilateral hearing loss; engineer, life coach, and feminist community organizer.
【支持我们 Please Support Us】
如果喜欢这期节目并愿意支持我们：
* 海外用户：patreon.com/disabledtalks
* 海内用户：afdian.com/a/disabledtalks
* 商务合作邮箱：[email protected]
If you like our show and want to support us, please consider the following:
* Those Abroad: patreon.com/disabledtalks
* Those in China: afdian.com/a/disabledtalks
* Business Inquiries Email: [email protected]