BIO PHOTO

Interview conducted by Agnes Collison on October 29, 2020

Location: Philadelphia, Pennsylvania

Tracy Chen is an 18 year old woman with nemaline rod myopathy. She requires a ventilator to breathe and uses an electric wheelchair for mobility.

English | 畅所欲言 (Mandarin)

We Will Talk About These Days: English

INTERVIEWER
Describe a typical day in your life before COVID-Describe your days now. Are there people you cannot see due to COVID? How are you coping with these temporary loss of connections?

TRACY
Due to my medical conditions, I have been living away from my family since I was six months old. Before the lock-down in March, I went to school on weekdays unless I had medical appointments. We also made a lot of social outings and I really miss those. On Sundays my family visited me: mom, dad and my two younger brothers. They haven't been able to visit since March, so that's been the hardest. I talk or text, sometimes Face Time with them on the phone, but it's just not the same. My parents only speak some English, and I do know a little bit of Chinese but not a whole lot because I have never lived with them. So, it's hard to feel connected.

INTERVIEWER
Describe the challenges you are experiencing due to COVID. How do these challenges impact your future plans?

TRACY
Not seeing my family [SINCE COVID-19] is definitely the hardest. My residence couldn't accept visitors after the lock-down, so I didn't see my parents and brothers for almost five months!

We Will Talk About These Days: 畅所欲言 (Mandarin)

INTERVIEWER
请描述在COVID-19 之前你典型的一天。描述你目前的一天。有那些変化?

TRACY
在疫情之前,除了去看医生,我每天去上学。我们也经常有些社交活动。毎个星期天,我的爸妈和两个弟弟会來探访我。他们從三月起就不能來了,所以这对我來说是最困难的。我和他们打电话,送讯息,有时候FaceTime, 可是總觉得不一样。我爸妈只说一点英语,而我只懂一点点中文,因为我從没在家里住过。所以在电话上沟通起来很困难,总是感觉不太亲密。

INTERVIEWER
因为COVID-19, 请描述你所经历的挑战。

TRACY
见不到我的家人绝对是最难过的。我的居所在疫情后不能允许探访,所以我将近五个月没有和爸妈和弟弟们见面!

The Chinatown Disability Advocacy Project (CDAP)

The Chinatown Disability Advocacy Project is a grassroots group of parents and community members who educate and advocate for inclusion in education, healthcare, and social life. We hold monthly workshops, education sessions and community activities, so people have information to best plan for themselves and their families. You can follow the Chinatown Disability Advocacy Project on Facebook to find out about our activities.

华阜残障倡导会是一个由家长与社区成员共同组成的团体。我们的使命是运用教学和拥护的方式,提倡在教育,医疗保健,和社交生活的社会融入。我们每个月提供讲座,教育培训,和社区活动,以期提供资源,帮助大家和家人更好的计划未来。请您在臉書上跟随Chinatown Disability Advocacy Project 来参与我们的活动。

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This project was made possible with generous support from the Independence Public Media Foundation.

For more information

Contact us at iod@temple.edu.