Xiao Jia, 28, wears many hats. She’s a makeup artist, a yoga coach, and a nonprofit organization staff. She lives in Beijing with her daughter and husband. Due to illness, Xiao Jia started losing eyesight at 14, and became blind at 16. While coping with visual impairment, Xiao learned yoga, thinking the skill can become her livelihood in the future. Although she took other career path later, she regularly practices yoga. She said, “Yoga to me is not just a work out to keep my body in shape. When I became blind and lost hope for everything, yoga changed my life.” During COVID-19 lockdown in 2020, she started an online yoga class for people with impairment, helping other people to stay healthy and positive during a difficult period. Xiao has a mission of influencing 10,000 women with disability with her own story. She was trained to be a professional makeup artist in 2015. Now she is working at a non-profit organization for women with disability, using her knowledge as a beautician to help women with disability to improve their self-image and confidence.
Song Yang, 40, lives in Beijing with his wife. Deeply interested in psychology and philosophy, Song values independent thinking and generosity to others. He has extensive experience working with non-profit organizations serving different vulnerable groups such as people with intellectual and developmental impairment and orphans. When he started working for children with autism and intellectual impairment in 2012, there was rarely any other organizations working on the same issue. In his work, he emphasizes a people-centered approach, empowering individuals to make independent decisions on how they want to lead their life. Song has volunteered in hospice care for two years. With his background in psychology and philosophy, he’s drawn to the topic of death. “I want to know how other people react to death, and how I can offer them help.” He’s worked with people suffering from cancer and chronicle disease, offering them companionship without judgement and bringing them calmness in their last remaining days. 宋洋今年40岁,他和他的妻子住在北京。宋洋对心理学和哲学很感兴趣,他很看重思想的独立和与人为善。 他曾在多个公益机构工作,为不同的弱势群体服务,包括心智障碍者和孤儿。他在2012年从事自闭症及智力障碍康复服务时,这个议题还鲜有其他机构介入。在工作中,他很强调以人为本的工作方式,为个体提供支持,让他们进行自主独立的选择。 宋洋在一个安宁疗户机构做志愿者两年了。因为他对心理学和哲学的研究,他希望对死亡有更多的感悟。他说:“我想知道更多的人在面对死亡的时候会有什么表现,我能不能给他们和身边提供一些帮助。”他为癌症患者和慢性病患者都提供过临终关怀服务,不带主观评判地陪伴他们,为他们的临终时光带来一些平静。
Li Xiqi, 34, lives in Beijing with her husband and 5-year-old daughter. Together with her husband, she manages a pet supplies business and runs a training school in Hebei teaching people with disability necessary skills to start a small business. She’s also taking an accounting course, hoping to become a certified accountant in the future. Li Xiqi has Cerebral Palsy, which makes it hard for her to control some parts of her muscle. She writes and walks slower, but she believes living with disability is just a condition, not a limitation. What really matters is to lead the life she wants. “I used to want to prove that I can do anything just like a person without disability. Now I don’t, because I know there’s always a way to work around it.” Li said. She owes her change of thought to participating in events organized by a group of women with disabilities. Having met other people with different types of disabilities, she feels inspired and more confident about who she is. 李希奇今年34岁,她和她的丈夫和6岁的女儿住在北京。她和丈夫共同经营一个宠物用品网店,同时也在河北永清为残障群体开办电商技能培训。李希奇还在学习会计课程,希望以后成为一个注册会计师。 由于脑瘫,李希奇无法很好的控制某些肌肉,她写字、走路都比较慢,但是她相信残障只是一种状态,而不是局限她去尝试无限可能的障碍。“我以前总想要证明我是一个所谓的正常人。现在我接受了有些事我身体不方便做不了,但是我可以想办法来解决它。”李希奇说。 李希奇对自己残障身份认同的改变发生在过去几年里。通过参与残障女性机构组织的活动,她结识了不同障别的伙伴,受到她们的鼓舞,她感到更自信了。
Ye Linna, 28, from Korla, Xinjiang, is a newcomer to Beijing. She moved to Beijing in late 2018 for a workshop to learn how to live independently with disabilities. Her experience in Beijing left such an impression on her that she decided to find a job and stay in Beijing after the workshop. She now works in the finance department of a company. The company allows her to work on a flexible schedule to accommodating her commuting on a wheelchair. She’s happy with her life because it gives her the sense that she’s living and working in a big city just like any other young people. She has a deep attachment to her hometown, but it’s hard for her to move around in a wheelchair without her parents’ help. She said there’s barely any accessible facilities in Korla. When she went to school there, her parents had to carry her up the stairs to her classroom everyday. Her life in Beijing is much easier with public transportations, ramps and accessible bathrooms everywhere. Plus, she’s made friends of her age who have similar challenges, which makes her feel stronger and more capable to overcome all the difficulties she faces. 叶琳娜来自新疆库尔勒。今年28岁的她,已经搬到北京生活2年多了。2018年底因为一个独立生活营的机会,叶琳娜来到北京,几个月在北京的生活让她决定留在这里,并找了工作。她现在在一家公司做财务,公司为了她上班方便,允许她弹性的工作时间。她对现在的生活很满意,因为她觉得自己过上了和像其他在大城市里奋斗的年轻人一样的生活。 叶琳娜十分热爱她的家乡,但是在老家坐轮椅离不开父母帮忙。她说库尔勒的无障碍设施还很少。在她上学的时候,她的爸爸每天要抱她上下楼。而在北京,大部分公共交通的无障碍设施、坡道和无障碍卫生间都使独立出行变得方便许多。在北京,她还认识了同龄的轮椅党伙伴,和大家交流让她可以更加坚强的面对各种各样的困难。
Zhao Aihong, 43, works in sales at an insurance company. She lives with her mother in Beijing, in order to take care of her. She thinks of herself as a perfectionist at work. Some of her clients have disabilities as well, and Zhao serves them by recommending the most suitable insurance packages. “I want to help as many people as possible, but I don’t have the financial capacity to do so. It’s very rewarding to know the insurance product I select for my clients turn out to be useful and help them in a difficult situation,” Zhao said. Knowing that many insurance policies work against the favor of people with disabilities, she hopes there will be an insurance product in the future that caters to the need of people with disabilities. Zhao loves to travel and has travelled all over China. When she was in her 20s, she would go hiking in the mountains with her friends regularly. Although she knows the health of her knees is deteriorating faster than people without disabilities, she says, “I want to travel as much as possible while I still can.” 赵爱红今年43岁,是保险公司的销售。为了照顾妈妈,她和妈妈一起住在北京。 在工作上,赵爱红是一个完美主义者。她的一些客户也有残障,赵爱红尽最大努力为他们推荐合适的保险产品。她说:“我想多帮助一些人,但我可能没有那么多钱帮助每一个人。保险给客户带去的是保障,而不是说我特别想帮别人的时候我没有办法。”很多有残障的人在投保时会遇到困难,对此,赵爱红希望将来会有专门针对残障人群需求的保险。 赵爱红热爱旅游,全国各地都走遍了。她在20多岁时,经常和朋友们一起去爬山。因为手术和关节磨损,她要比其他人更早地面对身体的局限。但她仍然说:“趁着我现在走得动的时候,我就想多走走。”
Li Hui, 36, is a dancer and choreographer. He started dancing since he was 12, and had decided early on that he wanted to be a professional dancer. He graduated from the prestigious Beijing Dance Academy in 2008, and was on his way to become a successful dancer. A traffic accident in 2012 turned his life upside down. When he knew that he had to spend the rest of life in a wheelchair, Li Hui was depressed thinking he would never dance again. Soon he realized he could dance in wheelchair, and he choreographed a dance “Swan Goose” to a Mongolian song. “I can still dance. I still have value. I can perform for other people with disabilities to encourage them.” Li Hui said. He founded Xinzhiyuan Art Center in 2018, focusing on dance training for everyone. Li has choreographed group dances for a mix of wheelchair users and people without disabilities. He said, “There’s no border or boundary in art. Everyone can enjoy and explore it.” He hopes through dancing and doing activities together, people with and without disabilities can know and make friends with each other, and become one family. 李辉今年36岁,他是一名舞者和编舞。他从12岁开始学跳舞,并且很早就决定要成为一名专业舞蹈演员。他在2008年从著名的北京舞蹈学院毕业,事业步入正轨。 2012年的一场车祸让他的生活发生了翻天覆地的变化。当他得知他要在轮椅上度过余生后,他萎靡不振,觉得自己再也无法跳舞了。不久后,他发现坐轮椅也可以跳舞,他用蒙古族歌曲编了一支舞叫“鸿雁”。李辉说:“我还能跳,我还有价值。我把舞蹈跳给更多的残障朋友看,鼓励他们。” 李辉在2018年成立了心之源艺术中心,专注舞蹈教学培训。他编排了一些团体舞蹈是非残障人和轮椅使用者共同完成的。他说:“艺术是没有国界和边界的。任何人都可以去享受它、去探寻它。”他希望通过舞蹈和各种活动,残障和非残障群体可以增进对彼此的了解,成为一个家庭。
Yang Guang, 49, used to love singing. Due to genetic conditions, he lost hearing in one ear at 40. Coping with hearing impairment was difficult for him in the beginning, and it took him a year to get used to it. He wants to be the bridge between people with disabilities and those without. Yang’s day job is event organizing. He brings his professional skills and resources to his volunteer work for the disability community. He’s organized poetry reading competition for people with disabilities. He says it’s rewarding to see how being on stage can boost people’s confidence and self-esteem, as people with disabilities rarely have the opportunity to showcase their talents. He’s also partnered with private companies to organize charity run to raise funds for vulnerable communities. People with disabilities are always mocked in comedy in China. Yang thinks it only perpetuates stereotypes about people with disabilities. His ambition is to create a stand-up comedy show that showcase people with disability. “We live with disabilities, so we don’t need to imitate. Moreover we can tell you what our life is like, and what we are thinking about.” Yang said. 杨光今年49岁,他曾经很爱唱歌。由于遗传,他在40岁时失去了一边的听力。最开始,适应听障是一个很痛苦的过程,他用了一年时间适应后,决定要做残障和非残障群体之间的桥梁。 杨光的职业是活动策划。他把他本职工作上积累的经验和资源带到了助残的志愿工作中。他为残障人组织过诗朗诵比赛,看到很少有机会在专业舞台上展示自我的残障人如此自信,让杨光感到欣慰。他还和企业合作组织慈善跑活动,为弱势群体募捐。 中国的相声小品经常取笑残障群体。杨光认为这种刻画只会增加社会对残障群体的刻板印象。他的一个理想是组织残障群体自己的脱口秀节目。他说:“我是真的残障我不用装,也不是卖丑。我要告诉你我的生活状态,我的精神状态是什么。”
Zhou Tong, 30, is from Zibo, Shandong. Her guide dog, Xiaojie, is an 8-year-old Labrador Retriever. Zhou applied for a guide dog in 2012, and met Xiaojie after three years of waiting. She’s lucky compared to many other people with visual impairment in China. The high demand and low supply of guide dog in China has kept many people waiting for years to no avail. “Xiaojie is the closest family to me. I can’t spend 24/7 with my parents or my husband, but Xiaojie is always with me. I think our relationship is beyond kinship, friendship and romantic relationship.” Zhou works in a mobile gaming company that designs and develops games specifically for people with visual impairment. She works in PR writing and community engagement for the company. In her daily life, she relies on screen-reading technology to read to her what’s on the screen of her cellphone and computer. If an APP is not optimized for screen-reading technology, she won’t be able to use the APP properly. She thinks that APPs should be designed to be easy to use for both people with disabilities and people without. Only in this way can people with disabilities be fully integrated into the society. 周彤来自山东淄博,今年30岁。她的导盲犬小杰是一条8岁的拉布拉多犬。周彤在2012年申请导盲犬,等待了3年后终于见到了小杰。和中国许多其他视障人相比,周彤是十分幸运的。中国的导盲犬供不应求,很多人等待多年都无法申请到。“小杰是我最亲的人,因为不管是父母也好,我老公也好,他都没有办法跟我24小时待在一起,但是小杰是24小时在陪着我。所以我们的关系可能超越所有的亲情、友情、爱情。”周彤说。
Li Yu, 30, is originally from Anhui, but has lived in Beijing for more than 3 years. As a proud member of the LGBTQ community, Li Yu is dedicated to HIV/AIDS awareness building and prevention. He used to work in a non-profit called Love Without Borders in Beijing, where he is deeply involved in HIV/AIDS prevention consultation. In 2020, he set up Silent Rainbow Studio, aiming to provide a support network on HIV/AIDS related issues for people with hearing impairment who are also members of the LGBTQ community. He posts articles educating his readers on HIV/AIDS on the studio’s WeChat account, and offers private consultation to people in need. Li Yu studied embroidery product design at Technical College for the Deaf in Tianjin University of Technology, the first special education college in China (founded in 1991). He is passionate about embroidery design and worked as a designer after graduation. Although he left the industry three years ago to pursue a career in non-profit, he still dreams of setting up his own embroidery studio in the future, and becoming a top embroidery designer. 李宇今年30岁,安徽人,已经在北京生活了3年多。作为一名骄傲的同志,李宇长期致力于艾滋病防治的工作。他曾在无国界爱心公益基金会工作,负责防艾咨询工作。李宇在2020年设立了无声彩虹工作室,为听障同志提供艾滋病防治支持网络。他在无声彩虹的微信公众号上发表防艾知识的文章,也为需要一对一咨询的人提供帮助。 李宇毕业于天津理工大学聋人工学院的艺术设计专业,这是中国第一所为残障人设立的高等院校。他非常热爱绣花打版设计,并且毕业后成为了一名绣花打版师。尽管后来他转行进入了公益领域,他依然希望可以开一个绣花打版工作室,重拾老本行,成为一名顶级的设计师。
Chen Weibin, 60, writes fable stories. He’s better known by his pen name, Yu Tu. He started writing since middle school, and had planned to continue his study in high school and university. However, he was rejected from high school due to his disabilities, since education resource was limited in the 70s, and preference was given to students without disabilities. Yu Tu first published a fable story in a newspaper in 1984. The story tells the profound truth that people are standing on an equal footing even though some people are born taller and some are born shorter. The story came directly from his experience growing up. “There were discriminations against me, but I still wanted to be treated equally,” Yu Tu said. Yu Tu has seen progress in how people talk about and deal with disabilities throughout the past 60 years. The word, Canfei, which means crippled with a derogatory tone, was prevalently used when he was young, but largely abandoned now. Instead, Canji, and the more progressive word, Canzhang, are used now. “It’s just the difference of one Chinese character, but it reflects the culture in our society,” said Yu Tu. 陈唯斌年过花甲,是一个寓言作家。通过他的作品认识他的人会对他的笔名“余途”更加熟悉。他从中学开始写作。原本可以上高中、大学深造,但是七十年代教育资源稀缺,身有残障的他被学校拒之门外。 余途第一次在报纸上发表寓言故事是1984年。寓言揭示的道理是,人的身高有高低,但是在同一个地平线上的两个人站得一样高。这个故事和他的成长经历直接相关。“在成长经历中有这种歧视,但是我还是希望有平等的机会。”余途说。 余途见证了过去60年里人们讨论和对待残障问题的变化。对于残障群体的称呼,从他小时候广泛使用、现在已经被抛弃的“残废”,到“残疾”和更为积极的表述“残障”。他说:“一字之差,但是已经是观念更新、社会进步的一种标志。”
Liang Ning, 42, is currently a stay-at-home dad. He also helps his wife run a calligraphy studio, taking care of poster design and social media for the studio. Liang used to work in advertisement. During his 20 years in the business, he’s worked as a sales, copy writer, designer and creative director. He is a quick learner and he’s proud that he’s good at the job he does. He became a full-time dad at 40 to take care of his daughter, but he didn’t stop learning new things. He’s currently learning video editing software in his spare time, following the trend of the short video boom. Liang has a shorter stature because of a rare genetic disorder. Since he was a kid, he believes that he can do anything just like the others even though he looks slightly different. He remembers back in the days he felt comfortable at people staring at him. Now this rarely happens thanks to increasing awareness of disabilities in the public. “People with disabilities don’t need other people’s sympathy. What we need is recognition of our abilities, which allows me to express ourselves and to work just like anyone else.” Liang said. 梁宁今年42岁,目前是一名全职爸爸。他同时帮妻子打理书法工作室的宣传工作,负责设计海报、运营社交媒体。 梁宁在广告行业有20年的工作经验。他做过销售、文案、设计、创意总监。他学东西很快,在自己的行业有所建树。他在40岁离职,开始全职照顾女儿,但他并没有停止学习新技能。看到短视频的兴起,梁宁正在学习视频剪辑。 因为一种遗传的罕见病,梁宁比其他人略矮一些。尽管他和其他人有不同之处,他从小就相信自己可以做任何其他人能做到的事。他还记得小时候经常有人会盯着他看,让他感到不适。现在随着大众对残障的认知有所提升,就很少出现这种问题了。她说:“残障人其实不太需要同情。我们需要的是认可,让我们可以像正常人一样的表达自己、一样的工作,就可以了。”
Xu Fengbo, 16, is a second-year student at Chaoyang Peizhi School, a publicly funded special school for children with intellectual impairment. When Xu was less than 2 years old, viral encephalitis left him with severe cognitive impairment. Xu goes everywhere with his iPad. He likes to play shooting games, and he is an excellent player. In his spare time, Xu likes to read books and practice writing with his mother. Xu loves to eat sweet food, and he especially likes egg tart, a baked desert made of egg, milk and butter. Xu’s mother bought him ingredients and baking tools, so Xu can enjoy making and eating egg tarts at home. Xu and his mother are well traveled. They have been to countries such as Canada, Japan, France and Germany, traveling as tourists and meeting other people with disabilities. The international experience expanded their knowledge on how people with disabilities live in other countries. 许逢博今年16岁,是朝阳培智学校初二学生。许逢博不到两岁的时候,一次病毒性脑炎严重影响了他的智力发展。 许逢博平时iPad不离手。他喜欢玩射击类游戏,而且是个资深玩家。课余时间里,他喜欢和妈妈一起读书、练习写字。许逢博喜欢吃甜食,特别是蛋挞。他的妈妈为了买了做蛋挞的食材和工具,许逢博经常在家里自制蛋挞。 许逢博和他的妈妈一起去过很多国家,比如加拿大、日本、法国、德国,在当地旅游或参加残障相关的活动。通过在海外的经历,他们了解到了其他国家的残障群体是如何生活的。
A portrait project commissioned by Swedish Embassy in Beijing to increase the visibility of disability and to challenge stereotypes on disability in our society.