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本期节目文字稿
【聊了什么 The What】
本期节目,我们从六岁女孩小美(化名)的离世谈起。2025年3月24日,小美在上海交通大学医学院附属新华医院接受了一项被称为“全球首例”的试验性脑部碱基编辑治疗。术后七天,她在出现严重免疫反应和血栓性微血管病后不幸离世。
基因编辑如何运作?病毒载体、免疫反应与脱靶效应可能带来哪些风险?动物实验、伦理审查和知情同意是否真正保护了接受试验性治疗的儿童?当一个孩子的病情并不危及生命时,又是谁在决定什么样的风险“值得承担”?主播八如和仁慈与常驻嘉宾 Jayne 一起,从基因编辑的基本原理出发,讨论这场悲剧背后的医疗伦理、风险披露与公众知情权。
我们也试图把视线从单一的“医疗事故”移向更深层的问题:社会对独立、健全与正常的执念,是否加剧了残障儿童及其家庭的恐惧?当教育、照护和社会支持不足时,选择高风险医疗干预,究竟是不是一种真正自由的选择?当医学试图“修正”残障,我们更需要追问:它是否真正把人的生命、意愿与生活经验放在了中心?
内容提示:本期涉及儿童死亡、试验性医疗、医疗创伤及健全中心主义。
《科学》独家披露:一名女孩在中国基因编辑试验中死亡
In this episode, we begin with the death of Mei, a six-year-old girl whose name has been changed for privacy. On March 24, 2025, she underwent an experimental gene-editing therapy directed at the brain at Xinhua Hospital affiliated with Shanghai Jiao Tong University School of Medicine. The procedure was described as the first of its kind in the world. Seven days later, she died after developing a severe immune response and thrombotic microangiopathy.
How does gene editing work? What risks are associated with viral vectors, immune reactions, and off-target effects? Did the animal testing, ethical review, and informed-consent process adequately protect a child receiving an experimental treatment? When a child’s condition is not life-threatening, who decides which risks are “worth taking”? Hosts Baru and Merci are joined by guest Jayne to examine the science of gene editing and the questions of medical ethics, risk disclosure, and the public’s right to know raised by this case.
We also look beyond the idea of an isolated “medical accident” to consider a deeper issue: Does society’s fixation on independence, able-bodiedness, and normalcy intensify the fears experienced by disabled children and their families? When adequate education, caregiving, and social support are unavailable, can choosing a high-risk medical intervention truly be considered a free choice? When medicine attempts to “correct” disability, we must ask whether it is truly placing people’s lives, wishes, and lived experiences at the center.
Content note: This episode discusses the death of a child, experimental medical treatment, medical trauma, and ableism.
Death of girl in Chinese gene-editing trial was never made public | Science | AAAS
【本期嘉宾 Episode Guests】
Jayne:常驻嘉宾,拥有辣辣神经元
仁慈:假肢使用者,残障研究者,过气网红
八如:INFJ听人,电影导演,美国聋校教师
Jayne: Neurospicy, regular Podcast guest
Mercy: Prosthetic user, disability studies researcher, and "former internet influencer."
Baru: INFJ, hearing ally, film director, and Teacher of the Deaf and Hard of Hearing
【时间轴 The When】
00:00:00 | “全球首例”之后:小美与SBC综合征
00:03:33 | 基因编辑如何“改写”DNA?
00:07:42 | 病毒载体、免疫反应与脱靶风险
00:15:16 | 这场治疗真的有必要吗?
00:19:41 | 动物实验、风险披露与伦理审查
00:25:38 | 当医学试图“修正”残障
00:36:00 | 知情同意是否包括其他选择?
00:40:19 | 公众知情权与医学权威
00:44:56 | 为什么承担风险的总是孩子?
00:48:19 | 沉默、论文与一场被隐去的死亡
00:00:00 | After the “World’s First”: Xiaomei and SBC Syndrome
00:03:33 | How Does Gene Editing “Rewrite” DNA?
00:07:42 | Viral Vectors, Immune Reactions, and Off-Target Risks
00:15:16 | Was This Treatment Truly Necessary?
00:19:41 | Animal Testing, Risk Disclosure, and Ethical Review
00:25:38 | When Medicine Seeks to “Correct” Disability
00:36:00 | Does Informed Consent Include Alternatives?
00:40:19 | The Public’s Right to Know and Medical Authority
00:44:56 | Why Are Children the Ones Bearing the Risk?
00:48:19 | Silence, Publication, and a Death Left Untold
【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.
【支持我们 Please Support Us】
如果喜欢这期节目并愿意支持我们:
If you like our show and want to support us, please consider the following:
本期节目文字稿
【聊了什么 The What】
九月是聋人意识月。主播八如邀请到了她的两位偶像:小果和自由博士(Dr. Freedom),从他们接触手语、走进聋人社群的经历聊起。从学手语时的好奇,到真正认识一个个具体的人,话题也慢慢延伸到舒适圈之外。口语聋人、手语使用者和聋盲者的不同经历提醒我们:聋人社群里有许多不同的生活方式。面对快速发展的 AI 手语翻译,我们讨论了技术能提供哪些帮助,又有哪些人与人之间的沟通无法被替代。最后,小果和 Freedom 分享了短剧、绘本与戏剧工作坊的计划,希望让更多聋人社群的故事被大众看见。
September is Deaf Awareness Month. Host Baru invites two of her personal idols, Xiao Guo and Dr. Freedom, to talk about how they first encountered sign language and entered the Deaf community. From the curiosity of learning to sign to getting to know real people, the conversation gradually moves beyond our comfort zones. The experiences of Deaf people who use oral languages, signers, and DeafBlind people remind us that the Deaf community holds many different ways of living. As AI sign language translation develops quickly, we discuss what technology can offer and what human connection it cannot replace. Xiao Guo and Freedom also share their plans for short dramas, picture books, and theater workshops, hoping to bring more stories from the Deaf community to a wider audience.
【本期嘉宾 Episode Guests】
小果:戏剧研究博士,小红书手语博主@小果灵灵。
Freedom: 哥伦比亚大学教育学院聋人特殊教育博士
八如:INFJ听人,艺术家,美国聋校执证教师
Xiao Guo: PhD in Theatre Studies; Content creator on Red Note (@小果灵灵)
Freedom: PhD in Deaf Education from Teachers College, Columbia University.
Baru: INFJ, hearing ally, artist, and certified Teacher of the Deaf and Hard of Hearing
【时间轴 The When】
00:00:00 认识我们超级棒的嘉宾
00:04:56 自由博士:第一次接触聋人教授用手语讲课
00:09:35 小果:从手语走向戏剧研究
00:13:59 走近身心障碍者的日常与生活经验
00:19:14 听人如何找到自己在聋人社群中的位置
00:23:08 从聋人博主到手语艺术:更多表达正在出现
00:27:50 当父母替聋人孩子做选择
00:32:56 身份的交叉:谁的差异更容易被看见?
00:38:16 聋盲人的触觉手语与亲触语
00:43:27 AI 走进手语翻译与戏剧:机会和担忧
00:48:23 聋人意识月过后,我们还能做什么?
00:53:14 用绘本把聋人戏剧带进课堂
00:58:02 回到人与人:为社群创造更多快乐
00:00:00 Meet Our Wonderful Guests
00:04:56 Dr. Freedom: My First Class with a Deaf Professor Teaching in Sign Language
00:09:35 Xiao Guo: From Sign Language to Theatre Research
00:13:59 Getting to Know the Everyday Lives of Disabled People
00:19:14 How Hearing People Find Their Place in Deaf Communities
00:23:08 From Deaf Content Creators to Sign Language Art: New Forms of Expression
00:27:50 When Parents Make Choices for Deaf Children
00:32:56 Intersecting Identities: Whose Differences Are More Visible?
00:38:16 DeafBlind Community: Tactile Signing and ProTactile
00:43:27 AI in Sign Language Translation and Theatre: Possibilities and Concerns
00:48:23 Beyond Deaf Awareness Month: What Can We Do Next?
00:53:14 Bringing Deaf Theatre into the Classroom Through Illustrations
00:58:02 Back to Human Connection: Creating Joy Together
【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.
【支持我们 Please Support Us】
如果喜欢这期节目并愿意支持我们:
If you like our show and want to support us, please consider the following:
本期节目文字稿
【聊了什么 The What】
本期节目围绕科技与残障展开讨论,从电子导盲犬、电子盲杖、手语翻译手套,到助听器和高科技假肢,我们一起聊了一个看似简单、其实非常复杂的问题:什么才是真正好的“科技助残”?
In this episode, we explore the relationship between technology and disability. From electronic guide dogs, smart canes, and sign-language-translating gloves to hearing aids and high-tech prosthetics, we ask a seemingly simple but surprisingly complex question: What does genuinely good assistive technology look like? Technology does not automatically mean progress. Some products may appear innovative and futuristic while overlooking disabled people’s actual experiences and needs—or even trying to “solve” things that disabled people do not see as problems in the first place. We discuss why certain highly publicized technologies have faced criticism from disability communities and what makes technology genuinely useful and sustainable. Through examples such as hearing aids and prosthetics, we also explore how attitudes toward technology, treatment, and rehabilitation vary across disability communities, and whether expensive high-tech solutions can reinforce the outdated idea that disability is primarily an individual problem.
【本期嘉宾 Episode Guests】
孔铭:盲人,导盲犬使用者,音乐家
仁慈:假肢使用者,残障研究者,过气网红
八如:INFJ听人,艺术家,美国聋校教师
Kong Ming: Blind musician, guide dog handler, and Ph.D. student.
Mercy: Prosthetic user, disability studies researcher, and "former internet influencer."
Baru: INFJ, hearing ally, artist, and Teacher of the Deaf and Hard of Hearing
【时间轴 The When】
01:11 电子导盲犬与电子盲杖的风险与局限
07:24 为什么可以翻译手语的手套遭到了反对?
13:40 真正好的科技是如何改善残障者生活的?
19:00 具有生命力的科技产品应该是什么样的?
28:00 离谱的“科技助残”是什么样的?
32:00 助听器并不能解决“聋”,后续治疗至关重要
39:00 不同残障类别的人对“治疗”和科技的态度大不相同
46:35 高科技的假肢如何为肢体障碍者赋能
50:35 昂贵的科技是否会增强陈旧的残障是个人问题观念呢?
01:11 Risks and Limitations of Electronic Guide Dogs and Smart Canes
07:24 Why Have Sign-Language-Translating Gloves Faced Backlash?
13:40 How Can Good Technology Truly Improve the Lives of Disabled People?
19:00 What Makes an Assistive Technology Product Truly Sustainable and Enduring?
28:00 What Does Absurd “Tech for Disability” Look Like?
32:00 Hearing Aids Cannot “Fix” Deafness: Why Follow-Up Care Is Crucial
39:00 How Attitudes Toward “Treatment” and Technology Differ Across Disability Groups
46:35 How High-Tech Prosthetics Can Empower People with Limb Disabilities
50:35 Does Expensive Technology Reinforce the Outdated Idea That Disability Is an Individual Problem?
【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.
【支持我们 Please Support Us】
如果喜欢这期节目并愿意支持我们:
If you like our show and want to support us, please consider the following:
本期节目文字稿
【聊了什么 The What】
七月是“残障骄傲月”(Disability Pride Month)。在这个源于西方的概念里,有人找到了破除羞耻感的解药,也有人看到了它的阶层局限与视觉中心主义的盲区。本期节目,仁慈和八如邀请到了听众们超级喜欢的大程子和孔铭,从中文语境下的“骄傲与自豪”辨析,聊到公共游行的包容性反思,再到个人努力与系统变革的拉扯。如果生活已经很难了,我们到底在"骄傲"什么?“骄傲”是一种特权,还是一种重新定义自我的力量?我们欢迎你加入这场关于身体、身份认同与社会系统的坦诚对话。
July is Disability Pride Month. Born out of a Western context, this concept has become, for some, an antidote to internalized shame — while for others, it exposes real blind spots around class privilege and visually centric culture. In this episode, Renci and Baru are joined by two guests our listeners love — Da Cheng Zi and Kong Ming — for a conversation that moves from unpacking "pride" versus "self respect" in the Chinese language, to reflections on how inclusive (or not) public parades really are, to the tension between individual effort and systemic change. If life is already hard enough, what exactly are we being "proud" of? Is pride a privilege, or a way of redefining ourselves on our own terms? Join us for this honest conversation about the body, identity, and the systems we live within.
【本期嘉宾 This episode's guests】
大程子:轮椅使用者,UBC硕士在读,自媒体创作者。
孔铭:盲人,导盲犬使用者,音乐家
仁慈:假肢使用者,残障研究者,过气网红
八如:INFJ听人,艺术家,美国聋校教师
Da Cheng Zi: Wheelchair user, M.A. student at the University of British Columbia, and disability content creator.
Kong Ming: Blind musician, guide dog handler, and Ph.D. student.
Mercy: Prosthetic user, disability studies researcher, and "former internet influencer."
Baru: INFJ, hearing ally, artist, and Teacher of the Deaf and Hard of Hearing
【时间轴 The When】
【一起来读书吧 Bookclub】
《残言片语》的姐妹播客《疲惫娇娃》最近会举办一个在纽约的读书会活动,感兴趣的朋友欢迎报名参加!
《台湾漫游录》线下读书会:
【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.
【支持我们 Please Support Us】
如果喜欢这期节目并愿意支持我们:
If you like our show and want to support us, please consider the following:
本期节目文字稿
【聊了什么 The What】
你可能看过手语,但未必看过真正的手语剧场。很多人以为,手语只是给聋人"翻译"用的。但事实上,它也可以是一种完整的艺术语言。甚至,一部经典戏剧,因为加入手语,能够拥有完全不同的生命力。这一期《残言片语》,八如邀请长期研究聋人文化与表演艺术的静静,一起聊聊一个很少被讨论,却足以颠覆我们对戏剧和语言想象的话题: 手语剧场。我们从纽约实地探访美国聋人剧团聊起,走进美国国家聋人剧院的发展历程,也走进美国西部聋人剧院(Deaf West Theatre)的创新实践;从百老汇手语音乐剧,到国内《纸鹤》《鸟的故事》等作品,一起看看手语如何成为一种真正的艺术表达,而不仅仅是无障碍。
如果你对手语、戏剧、残障文化、教育、无障碍设计感兴趣,或者只是想看看这个世界还有哪些不同的表达方式,希望这一期能带给你一些新的启发。因为有时候,真正改变我们的,并不是一种新的语言,而是一种新的观看方式。
You may have seen sign language before, but you probably haven't seen true sign language theatre. Many people assume sign language is only used to "interpret" for Deaf people. In fact, it can be a complete artistic language. Once sign language is woven into the classic play, it can take on an entirely different life. In this episode of Disabled Talks (残言片语), Baru invites Jingjing, a long-time researcher of Deaf culture and performing arts, to discuss a topic rarely talked about yet capable of overturning our assumptions about theatre and language: sign language theatre. We start with a visit to a Deaf theatre company in New York, trace the rise and development of the National Theatre of the Deaf, and look at the innovative practices of Deaf West Theatre. From Broadway sign language musicals to domestic works like Paper Crane and The Story of the Bird, we explore how sign language can become a genuine form of artistic expression, not just a matter of accessibility.
If you're interested in sign language, theatre, disability culture, education, or accessible design — or simply curious about other ways of expressing the world- we hope this episode offers some new inspiration. Because sometimes, what truly changes us isn't a new language, but a new way of seeing.
【本期嘉宾 This episode's guests】
静静:表演研究学者,长期关注聋人文化、手语剧场与公共艺术教育。
八如:INFJ聋校老师,无障碍艺术倡导
Jingjing: Performance studies scholar with a long-standing focus on Deaf culture, sign language theatre, and public arts education.
Baru: an INFJ Teacher of the Deaf; Advocate for accessible art.
【时间轴 The When】
00:10 节目开场|为什么想聊手语剧场?
03:05 什么是手语剧场?它和聋人剧场有什么区别?
08:42 美国国家聋人剧院的兴衰:我们在纽约看到的最新现状
12:31 Deaf West Theatre:一种更灵活、更可持续的聋人剧团模式
16:20 中国的手语剧场发展:《纸鹤》《鸟的故事》等实践
20:54 聋人剧场、身份认同与手语作为艺术语言
24:15 百老汇手语音乐剧:无障碍如何成为艺术的一部分
30:29 城乡教育差距、资源不平等与聋人文化传播
36:12 为什么一定要去加劳德特大学(Gallaudet University)?
46:17 艺术、无障碍与商业化:聋人创作如何才能真正持续?
00:10 Opening | Why talk about sign language theatre?
03:05 What is sign language theatre? How does it differ from Deaf theatre?
08:42 The rise and fall of the National Theatre of the Deaf: the latest state of things, as we saw it in New York
12:31 Deaf West Theatre: a more flexible, more sustainable model for Deaf theatre companies
16:20 The development of sign language theatre in China: works like Paper Crane and The Story of the Bird
20:54 Deaf theatre, identity, and sign language as an artistic language
24:15 Broadway sign language musicals: how accessibility becomes part of the art
30:29 The urban-rural education gap, unequal resources, and the spread of Deaf culture
36:12 Why go to Gallaudet University?
46:17 Art, accessibility, and commercialization: how can Deaf creative work truly be sustained?
【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.
【支持我们 Please Support Us】
如果喜欢这期节目并愿意支持我们:
If you like our show and want to support us, please consider the following:
本期节目文字稿
【聊了什么 The What】
5月17日全国助残日前夕,一则“百万粉丝盲人博主在盲道被电动车撞倒”的视频冲上热搜。随后,北京警方通报该事件系摆拍,涉事人员被采取刑事强制措施。舆论迅速反转。这一期,我们邀请了视障朋友孔铭,小提琴手和预备博士,一起聊聊“盲兔事件”背后的残障网红经济、公众对残障者的想象,以及互联网时代真实表达的困境。为什么公众总在怀疑盲人是不是“真盲”?当残障者成为流量商品后,真实还重要吗?而真正的问题,究竟是摆拍,还是大众从未真正理解残障者的生活?
On the eve of National Disability Day, a video exploded across Chinese social media: a blind influencer with millions of followers appeared to be knocked down by an e-scooter while walking on a tactile paving path. Soon after, Beijing police announced the incident had been staged. The people involved were criminally charged. Public opinion flipped almost overnight. In this episode, we’re joined by Kong Ming, a visually impaired violinist and soon-to-be PhD student, to unpack the deeper issues underneath the controversy: the rise of disability influencers, the public’s imagination of what disability is supposed to look like, and the impossible tension of trying to present an “authentic” disabled life online. Why are disabled people constantly asked to prove they’re “disabled enough”? When disability becomes a commodity, can authenticity still exist? And is the real issue the staged video itself, or the fact that so many people still don’t understand what it actually means to live with a disability?
【时间轴 The When】
00:00:00|盲兔事件始末:从热搜到“摆拍”反转
00:05:27|“一颗老鼠屎坏了一锅粥”:残障群体的愤怒与失望
00:10:23|真实存在的危险:视障者在城市中的出行困境
00:20:43|当平台开始怀疑残障者:限流、封杀与“真实性”
00:29:47|MCN、流量与残障网红工业化
00:34:33|盲人并不只有一种:关于视力障碍的重要科普
00:44:00|摆拍为什么会引发如此巨大的舆论反噬
00:53:17|金钱、理想与“残障身份”:我们到底想成为谁?
00:00:00 | The controversy: From Viral Sensation to “Staged” Scandal
00:05:27 | Anger and Disappointment Within the Disability Community
00:10:23 | The Danger Is Real: Challenges Faced by Blind and Visually Impaired People in Cities
00:20:43 | When Platforms Start Distrusting Disabled Creators: Shadowbanning, Deplatforming, and the Question of “Authenticity.”
00:29:47 | MCNs, Algorithms, and the Industrialization of Disability Influencers
00:34:33 | Blindness Is Not One Thing: Essential Context on Visual Impairment
00:44:00 | Why the Staged Video Triggered Such an Intense Public Backlash
00:53:17 | Money, Ideals, and Disability Identity: Who Are We Actually Trying to Become?
【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。
孔铭:盲人,导盲犬使用者,音乐家。
Renci: Prosthetic user, disability studies researcher, former influencer
Baru: Hearing artist, Teacher of the Deaf and Hard of Hearing, INFJ personality.
Kong Ming: Blind, guide dog user, musician
【支持我们 Please Support Us】
如果喜欢这期节目并愿意支持我们:
If you like our show and want to support us, please consider the following:
本期节目文字稿
【聊了什么 The What】
我们如何看待那些“不完美”的身体?在这场对话中,主播仁慈与好友孔铭、彦林一起,剥开非残障者面对残障群体时复杂且微妙的情感外壳。从“宁愿死也不愿残障”的极端恐惧,到带有优越感的怜悯,这些情绪背后隐藏着我们对生命不确定性的深层焦虑,以及对人生失控的本能抵制。我们探讨了这些情感的根源,并试图寻找一种更理想的连接方式:跨越种族、阶级、性别与身体状态的“共情”,在现实中是否真的可能?
How do we perceive "imperfect" bodies? In this episode, host Renci joins friends Kong Ming and Yan Lin to peel back the complex and subtle layers of emotion that non-disabled people feel toward the disability community. From the extreme fear of "rather being dead than disabled" to the subtle condescension of pity, these emotions mask a deep-seated anxiety about life’s uncertainty and an instinctive resistance to losing control. We explore the roots of these feelings and ask: is a more ideal form of connection—an empathy that transcends race, class, gender, and physical ability—actually possible in reality?
【时间轴 The When】
00:02:00|残障是如何流动到每个人身边的?
00:05:00|“如果我变成了残障者,我就不想活了”
00:09:55|对残障者的打量为什么会不礼貌?
00:13:15|为什么有人残障这个状态会恐惧?
00:19:00|拒绝残障的身体是在拒绝存在的不确定性
00:21:00|对医学与康复的迷信让我们难以与残障的身体共存
00:23:00|对残障者的怜悯/可怜是一件好事吗?
00:28:50|可怜与恐惧都反映了我们的价值观
00:32:18|与残障者共情才能真正尊重残障者的存在?
00:36:36|跨越种族、性别、身体状态的共情是否可能?
00:41:07|基于刻板印象的贴标签符合生物本能,但那是正确的吗?
00:43:11|如果残障状态无法避免,我们想生活在什么样的社会?
00:48:44|残障在社会中的可见度决定了对残障的情感
00:02:00 | How disability flows into everyone’s life
00:05:00 | "If I became disabled, I wouldn't want to live anymore"
00:09:55 | Why is staring at people with disabilities considered impolite?
00:13:15 | Why are some people afraid of the state of being disabled?
00:19:00 | Rejecting a disabled body is a rejection of the uncertainty of existence
00:21:00 | How a fixation on medicine and "recovery" makes it hard to coexist with disabled bodies
00:23:00 | Is pitying or feeling sorry for people with disabilities a good thing?
00:28:50 | Both pity and fear reflect our core values
00:32:18 | Can we only truly respect the existence of disabled people through empathy?
00:36:36 | Is empathy that transcends race, gender, and physical ability even possible?
00:41:07 | Labeling based on stereotypes aligns with biological instinct—but is it right?
00:43:11 | If disability is inevitable, what kind of society do we want to live in?
00:48:44 | The visibility of disability in society determines our emotional response toward it
【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。
孔铭:盲人,导盲犬使用者,音乐家。
彦林,杜克大学哲学博士生,在慢性病中做田野的哲学家
Renci: Prosthetic user, disability studies researcher, former influencer
Kong Ming: Blind, guide dog user, musician
Yan Lin: Duke University philosophy PhD student, philosopher doing fieldwork through chronic illness
【支持我们 Please Support Us】
如果喜欢这期节目并愿意支持我们:
If you like our show and want to support us, please consider the following:
本期节目文字稿
【聊了什么 The What】
四月是孤独症接纳月,从提升意识到真正接纳,我们还要走多少弯路?本期节目,主播八如邀请到Jayne与5岁半神经多样性男孩"小熊"的妈妈Anqi,围绕孤独症谱系展开了一场真实而温柔的对话。当我们说一个孩子"有问题"时,我们到底是在描述他,还是在描述我们无法理解他的方式?重复动作、情绪崩溃、社交困难、对环境过度敏感……它们不一定是"问题行为",而可能是孩子在用自己的方式调节世界、表达压力,甚至求救。对神经多样性保持包容,不只是为了这些孩子,更是在帮我们每一个人,与那个从未被好好对待过的内心小孩重新和解。孤独症谱系广阔而多元,本期嘉宾们的经历与视角只是其中一隅,无法代表所有人的生命体验,但在残言片语,每一个故事,都值得被认真倾听。
April is National Autism Acceptance Month. From raising awareness to genuine acceptance, how many detours still lie ahead? In this episode, host Baru sits down with Jayne and Anqi—mother of Xiǎo Xióng, a 5-and-a-half-year-old neurodivergent boy—for a candid, tender conversation about the autism spectrum. When we say a child "has a problem," are we really describing them, or are we describing our own inability to understand them? Repetitive movements, emotional meltdowns, social difficulties, sensory overwhelm—these aren't necessarily "problem behaviors." They may be a child's own way of regulating their world, expressing stress, or even reaching out for help.Holding space for neurodiversity isn't just for these children. It helps each of us make peace with the inner child who was never quite met with the care they needed. The autism spectrum is vast and varied. The experiences and perspectives our guests share are only one small corner of it, and can't speak for every life lived on the spectrum. But in these fragments of conversation, every story deserves to be heard with care.
【时间轴 The When】
00:00:00 开场介绍
00:01:23 什么是孤独症谱系?
00:01:57 安琪的"发现时刻"①:睡眠挑战
00:06:41 安琪的"发现时刻"②:旅行中的感官世界
00:10:27 作为成年ASD女性的成长经历
00:17:16 为什么选择不给小熊确诊?
00:25:28 社交与语言:来有往的对话很难
00:42:24 大众刻板印象 vs. 真实谱系
00:49:36 作为家长,我希望获得什么支持?
01:05:12 对非神经多样性人士说的话
00:00:00 Intro & Guest Introductions
00:01:23 What Is Autism Spectrum Disorder
00:01:57 Moment of Recognition ①: Sleep Struggles
00:06:41 Moment of Recognition ②: Sensory Sensitivities While Traveling
00:10:27 Growing Up Undiagnosed as an Autistic Woman
00:17:16 Why No Formal Diagnosis for Xiǎo Xióng?
00:25:28 Social & Language Challenges: The Art of Back-and-Forth
00:42:24 Stereotypes vs. the Real Spectrum
00:49:36 What Support Do Neurodivergent Families Need?
01:05:12 A Message to Neurotypical People
【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.
八如:INFJ听人,艺术家兼美国聋校教师。
Jayne:与前庭型偏头痛和单侧听损生活共存二十年,工程师/life coach/女性主义社群主理人。
Anqi: 五岁神经多元男孩的妈妈。
Baru: Hearing artist, Teacher of the Deaf and Hard of Hearing, INFJ personality.
Jayne: Co-existing vestibular migraine and unilateral hearing loss for twenty years; engineer, life coach, and founder of a feminist community.
Anqi: Mother of a five year old neuron divergent child.
【支持我们 Please Support Us】
如果喜欢这期节目并愿意支持我们:
If you like our show and want to support us, please consider the following:
本期节目文字稿
【聊了什么 The What】
这一期播客,主播仁慈与嘉宾 Jayne 一起聊了聊 ADHD(注意缺陷多动障碍)是如何逐渐被一些人视为一种社交“时髦病”甚至“聪明病”的。她们从小红书上流行的 ADHD 自测表是否科学谈起,讨论了 ADHD 究竟是不是一种疾病,以及确诊 ADHD 背后可能存在的性别视角。Jayne 随后分享了成年人确诊 ADHD 的困难与挑战,并介绍了常见的 ADHD 治疗药物。仁慈也聊到,有 ADHD 的人可能更适合哪些类型的工作,以及当越来越多人把 ADHD 写进个人简介时,它是否正在变成一种“时尚标签”。最后,两人讨论了作为朋友、伴侣和家人,我们可以如何更好地支持身边有 ADHD 的人,同时也谈到为什么 ADHD 不应该成为不负责任的借口。这一期播客,希望能带你更立体地了解 ADHD。
In this episode, host Mercy and guest Jayne talk about how ADHD (Attention Deficit Hyperactivity Disorder) has increasingly been portrayed as a social “fancy illness” or even a “smart person’s condition.” Starting with the popular ADHD self-tests circulating on Xiaohongshu (Rednote), they discuss whether these tests are scientifically reliable and ask a deeper question: is ADHD truly a disorder? They also explore the gender dynamics behind ADHD diagnoses. Jayne then shares how difficult it can be for adults to receive an ADHD diagnosis and explains common medications used in ADHD treatment. Renci follows by discussing what types of work environments may better suit people with ADHD, and whether putting “ADHD” in one’s bio has become a kind of social badge or identity marker. Finally, they talk about how friends, partners, and family members can better support people with ADHD—and why ADHD should not be used as an excuse for irresponsibility. This episode offers a thoughtful and accessible conversation to help you better understand ADHD.
【时间轴 The When】
00:01:20 网络上流行的 ADHD 自测表真的可靠吗?
00:11:53 ADHD 真的是一种“病”吗,还是别的什么?
00:17:30 为什么女孩在童年更少被诊断出 ADHD?
00:28:28 成年后才去确诊 ADHD,到底有多难?
00:37:51 ADHD 的治疗药物有哪些?真的有效吗?
00:44:00 哪些名人被诊断为 ADHD?(有些可能会让你很意外!)
00:45:45 有 ADHD 的人更适合什么样的职业?
00:46:35 为什么很多人在网上自测觉得自己有 ADHD,却反而更痛苦?
00:53:38 总是无法集中注意力?也许这真的不是你的错
00:59:40 把 ADHD 写进社交媒体个人简介:是自我认同还是一种潮流?
01:06:00 如何成为更支持 ADHD 人群的朋友、伴侣或家人?
01:14:19 ADHD 不是不负责任的借口
01:20:10 ADHD 可以被“治愈”吗?
00:01:20 Are viral ADHD self-tests online actually reliable?
00:11:53 Is ADHD really a disorder—or something else?
00:17:30 Why are girls less likely to be diagnosed with ADHD in childhood?
00:28:28 Getting diagnosed as an adult: why is it so hard?
00:37:51 ADHD medications: what are they and do they really work?
00:44:00 Famous people with ADHD (some will surprise you!)
00:45:45 What kinds of careers might suit people with ADHD better?
00:46:35 Why self-diagnosing ADHD online can sometimes make people feel worse
00:53:38 Can’t focus? It may not actually be your fault
00:59:40 Putting “ADHD” in your social media bio: empowerment or trend?
01:06:00 How to better support friends, partners, and family members with ADHD
01:14:19 ADHD is not an excuse for irresponsibility
01:20:10 Can ADHD ever be “cured”?
【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:残障者,残障研究者,残障法博士。《残言片语》播客主播。
Jayne:与前庭型偏头痛和单侧听损生活共存二十年,工程师/life coach/女性主义社群主理人。
Mercy: A person with disabilities, disability studies researcher, PhD in disability law. Host of Disabled Voices.
Jayne: Co-existing vestibular migraine and unilateral hearing loss for twenty years; engineer, life coach, and founder of a feminist community.
【支持我们 Please Support Us】
如果喜欢这期节目并愿意支持我们:
If you like our show and want to support us, please consider the following:
本期节目文字稿
【聊了什么 The What】
这一期节目,八如和疲惫娇娃CyberPink的主播小蓝和小杨一起聊了两部关于残障与照护的电影:刘玉玲主演的《罗丝密》(Rosemead) 与圣丹斯今年新出的口碑佳作《带我回家》(Take Me Home)。
讲述残障者的故事,很难绕过照护者的故事,也很容易陷入苦大仇深的叙事漩涡;毕竟社会给残障者的资源那么少,而在资源的匮乏中能讲出的故事常常是《罗丝密》中描绘出的毁灭性的绝路。而《带我回家》则通过一种模糊虚构与真实的即兴手段,让残障演员在故事中展现全新的创作方式。或许这种匮乏并不是必须的,或许优绩主义的亚裔家庭不一定要把残障视为绝路,或许电影人能给出的激进的想象能够推动我们重塑现实,毕竟生而为人我们终将是脆弱的。
In this episode we are joined our friends at 疲惫娇娃CyberPink to discuss two films about disability and caregiving: Rosemead, starring Lucy Liu, and Take Me Home, a critically acclaimed new Sundance film.
【时间轴 The When】
00:00 - 两部电影的初观感
08:11 - 《柔似蜜》:真实的悲剧还是缺乏想象力的“绝路”
19:01 - 《待我回家》中的姐姐角色:拒绝牺牲自我,寻找更长久的方案
31:01 - 《待我回家》的激进结局
36:39 - 导演 Liz Sargent 谈“激进的想象力”(Radical Imagination)
45:53 - 电影工业能够多大程度上支持残障演员
55:31 - 心理健康与精神健康在政策支持上的滞后性
59:11 - 亚裔社区的“家丑”观与优绩主义
71:14 - 人类本来就是脆弱的
00:00 – First impressions of the two films
08:11 – Rosemead: a true tragedy, or a “dead end” shaped by a failure of imagination
19:01 – The sister character in Take Me Home: refusing self-sacrifice and searching for a more sustainable path
31:01 – The radical ending of Take Me Home
36:39 – Director Liz Sargent on “radical imagination”
45:53 – To what extent the film industry can support disabled actors
55:31 – The lag in policy support for mental and psychological health
59:11 – The Asian community’s view of “family shame” and meritocracy
71:14 – Human beings are fragile to begin with
【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.
【支持我们 Please Support Us】
如果喜欢这期节目并愿意支持我们:
If you like our show and want to support us, please consider the following:
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