About the project
项目介绍
项目背景｜BACKGROUND
尘肺病是一种因长期吸入工业粉尘并滞留于肺部而引发的职业性疾病，以弥漫性肺纤维化为主要特征，具有不可逆转、无法治愈、潜伏期长等特点，是我国最常见、危害最为严重的职业病之一。相关统计显示，我国现有尘肺病患者约 600 万人，其中超过 95% 为农民群体。
江西省萍乡市素有“江南煤都”之称，拥有百余年的煤炭工业历史。从20世纪80年代初至90年代末，煤矿曾是当地经济的核心支柱，吸纳了大量矿工。然而，在职业健康意识薄弱、防护措施不足的背景下，长期高强度的粉尘暴露导致大量矿工罹患尘肺病，其影响持续至今。
尘肺病患者普遍面临医疗负担重、并发症多、生活质量低下等问题。基层医疗体系中“重治疗、轻康复”的结构性问题，加之乡村医疗资源不足，使患者的长期康复能力进一步受限。近两三年来，萍乡地区尘肺病呈现集中、高发态势，不仅影响患者个体的生存与发展，也使许多家庭因病返贫，对乡村振兴与社会稳定带来持续压力。
Pneumoconiosis is a chronic occupational disease caused by long-term inhalation of industrial dust, leading primarily to diffuse pulmonary fibrosis. It is irreversible, incurable, and often develops after a prolonged latency period. In China, pneumoconiosis remains the most prevalent and severe occupational disease, affecting an estimated six million individuals, over 95% of whom are rural workers.
Pingxiang, Jiangxi Province—historically known as the “Coal Capital of Southern China”—has over a century of industrial mining history. From the early 1980s to the late 1990s, coal mining served as the region’s primary economic pillar, employing tens of thousands of workers. Due to insufficient occupational health awareness, limited protective measures, and prolonged dust exposure, many miners developed pneumoconiosis, the consequences of which continue to shape local communities today.
Pneumoconiosis places a heavy medical and economic burden on affected families. Limited disease awareness often leads to delayed treatment and severe complications, while environmental and social pressures further undermine patients’ quality of life. At the community level, primary healthcare systems tend to prioritize acute treatment over long-term rehabilitation, and shortages of rural medical personnel further constrain recovery outcomes.
In recent years, Pingxiang has experienced a concentrated rise in pneumoconiosis cases. The disease not only affects individual health, but also contributes to household poverty, undermines rural development efforts, and poses broader social challenges.
被忽视的家庭照护者 Invisible Caregivers
在尘肺病家庭中，公众关注往往集中于患者本人，而长期承担照护责任的女性家庭成员却处于相对“失声”的位置。受传统家庭分工与文化观念影响，这些女性在家庭中既承担主要照护责任，又常被迫参与生计维持，其个人需求、心理压力与发展空间长期被忽视。
由于教育水平有限、资源获取渠道狭窄，这一群体在健康管理、经济参与和社会支持方面面临多重结构性限制，其困境直接影响到尘肺病家庭的整体生存质量与基本保障。
Public attention surrounding pneumoconiosis often centers on patients themselves, while overlooking family members—particularly women—who shoulder long-term caregiving responsibilities. Influenced by traditional family roles, these women frequently manage both household income generation and daily care for ill family members.
Limited access to education, information, and economic resources restricts their ability to seek support or advocate for their own needs. This structural invisibility directly affects household stability and long-term well-being.
项目目标与方法 Project Scope
Youth for Dust-Free Future（青春为无尘未来而生）是一个由青年发起的社会记录与研究型项目，关注尘肺病家庭中长期被忽视的照护者群体，强调通过记录、理解与连接，而非简单倡导来回应社会议题。
项目主要采用以下方式展开：
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口述历史记录：通过实地访谈，记录尘肺病家庭及照护者的生活经验；
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过程性记录：系统整理项目实践、社区活动与参与式行动的演变过程；
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公共呈现：通过文字、影像等方式建立开放档案，促进更广泛的社会理解
Youth for Dust-Free Future is a youth-led documentation and research initiative that focuses on the lived experiences of pneumoconiosis-affected families, particularly long-overlooked caregivers.
Rather than advocacy-driven narratives, the project emphasizes:
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Oral history interviews conducted with consent and contextual care
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Process-oriented documentation of community practices
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Public archiving through written and visual materials
Through sustained documentation, the project seeks to connect local experiences with broader social understanding.
项目初衷 Origin
项目由南京外国语学校学生鲁倪在实地调研过程中发起。通过持续的记录与传播，项目希望为尘肺病家庭中的女性照护者提供一个被看见、被理解的公共空间，并探索更具可持续性的支持路径。
Youth for Dust-Free Future 试图搭建一座连接社区经验与公共讨论的桥梁，让个体生命故事得以被认真倾听，也为相关议题的长期关注提供基础性的记录与参考。
The project was initiated by a student researcher from Nanjing Foreign Language School following field visits to Pingxiang. Youth for Dust-Free Future aims to provide a structured platform for listening, recording, and connecting—ensuring that lived experiences are documented with dignity and continuity