Live Strong

Abstract

ZH, female, born in 1988. The only child in the family. Grade IV intellectual disability. Graduated from a special education school (Shanghai Primary Vocational and Technical School of Changning District). Started working at Shanghai Papa John’s in 2009.

Interview with Ms. ZH’s Father

ZH, female, born in 1988. The only child in the family. Grade IV intellectual disability. Graduated from a special education school (Shanghai Primary Vocational and Technical School of Changning District). Started working at Shanghai Papa John’s in 2009.

Interviewee: ZH’s father

Interviewers: Chenyi Tang and Yuan Gu

Writer: Chenyi Tang

Interview dates: September 24, 2016 and February 19, 2017

Interview place: Xing Xiang Le Restaurant inside Longemont Shopping Mall near Zhongshan Park, Shanghai

A Special Family

Q: ZH’s first name is really special. Did you and your wife give her the name?

ZH’s father: I gave her the name. It was actually a no-brainer.

Q: Does it mean anything?

ZH’s father: It’s just my last name and my wife’s last name put together. Like I said, a no-brainer. If I had been more into this sort of thing, I would have looked up which of the five essential elements she is missing and given her a name implying this element.

Q: Are you and your wife both from Shanghai?

ZH’s father: Yes, we are.

Q: How did you meet your wife?

ZH’s father: Someone introduced us.

Q: How long did you date before getting married?

ZH’s father: Five years.

Q: That long?

ZH’s father: Yeah, five long years, because we didn’t have a place of our own.

Q: So you didn’t get married earlier for financial reasons?

ZH’s father: Mainly because of a lack of housing, and financial worries were another reason. We needed to have a place to live after getting married, so we dated for 5 years. After 5 years, her parents figured that nothing could be solved by us dating any longer. So they moved to some older housing and let us have their place for a month. And that 1 month led to ZH. (Laughing)

Q: When did you get married?

ZH’s father: In 1987. ZH’s mom was 28 and I was 30.

Q: What did you and ZH’s mom do back then?

ZH’s father: ZH’s mom worked at a processing shop affiliated with the community and I worked at a state-owned place.

Q: What exactly did you do at the state-owned place?

ZH’s father: I was the warehouse supervisor.

Q: Was the job tough?

ZH’s father: Of course it was tough. I have a disability too, a physical disability.¹ And you just saw for yourself, my wife has an intellectual disability. All three members of my family have disabilities. So when you asked me whether my job was tough, how could it not be tough?

Q: Back then, were you able to get by on the combined salaries of the two of you?

ZH’s father: Barely. We could keep food on the table, but soon we had a third mouth to feed.

Q: When was ZH born?

ZH’s father: In 1988.

Q: Do ZH and your wife have the same disability?

ZH’s father: My wife had a fever when she was young, and her mom closed the windows to keep her warm. Now we understand science and know that if someone has a fever, you should give her air and keep her cool to control the fever. ZH’s grandma wasn’t educated and had no idea. She just thought that my wife needed more clothes since she had the fever. She actually did a lot of damage that way.

Q: So your wife wasn’t born with the disability, it was caused by a fever later on.

ZH’s father: Right, it happened after she was born.

Q: Everyone on your wife’s side of the family is healthy and she was born healthy, right?

ZH’s father: Right.

Q: Did your wife go to school?

ZH’s father: She did.

Q: Until approximately what grade?

ZH’s father: Third grade.

Q: Did she start working right after finishing third grade?

ZH’s father: No. She stayed home after quitting school, then she got a job at the processing shop.

Q: What exactly did she do?

ZH’s father: She made small parts, like staplers that kids need for school. The shop gave her a separate space to work in, but she couldn’t assemble the entire stapler on her own.

Q: So she could only do simple things?

ZH’ father: Right.

Q: When did she start working at the processing shop?

ZH’s father: Let me think… She had to stay home when that place was shut down in 1995, and she had 10 years’ work experience, which means that she started working in 1985. Right, she was 26 and worked for 10 years. She receives a pension now.

Q: After that place was shut down, did ZH’s mom look for another job?

ZH’s father: No.

Q: So she has been staying home and living on her pension?

ZH’s father: No! (Raising his voice) It’s not like that. I was paying into her pension until she turned 48. Someone told me that people with disabilities can retire early once they lose the ability to work, so she retired at 48.

Q: So your wife started receiving a pension once she turned 48 and has been staying home since?

ZH’s father: Right.

Q: Did the community give her the job as part of an aid program?

ZH’s father: I guess you could put it like that.

Q: How was the pay?

ZH’s father: The pay was minimal. When I married her in 1987, she was making 200 yuan per month.

Q: Was that considered low at the time?

ZH’s father: Her pay was based on the quantity of what she produced. For example, if she made cups at 2 cents per cup, and she made 100 cups during a certain month, you just multiply 100 by 2 cents and that’s how much she would get paid for that particular month.

Q: That’s why the pay was pretty low.

ZH’s father: Right.

Q: After you got married, who wanted kids? You and your wife, or parents in the family?

ZH’s father: My parents wanted us to have kids.

Q: Were you not worried that the kids would inherit your wife’s disability?

ZH’s father: No. Because according to her parents, she wasn’t born with the disability, whereas I was. When ZH was born, there was nothing wrong with her physically. Before she turned five, we never had her checked for any disabilities. After she turned five, she had a fever every week, and the cramps and spasms that came with the fever damaged her brain.

Q: Is your wife’s intellectual disability more severe than ZH’s?

ZH’s father: It is.

Q: Do they have any difficulty communicating?

ZH’s father: No.

Q: How does ZH get along with her mom at home?

ZH’s father: They get along very well because her mom doesn’t spank her or yell at her.

Q: Can you give some examples of what she normally does at home with her mom?

ZH’s father: ZH used to not lift a finger around the house before she got married, and she even brought back her work clothes for her mom to wash. But moms love their kids no matter what, right? Despite her intellectual disability, her mom gets things done.

Q: So it’s just a normal relationship between a mom and a daughter?

ZH’s father: Right. She would tell her mom, “Oh Mom, I want some tea now.” And her mom would get her tea. And her mom would go out and buy chow mein for her. That’s just how they are with each other. Sometimes I would tell ZH off, tell her that with her intellectual disability, she shouldn’t just lie around doing nothing. And when she was going to the vocational school, I signed her up for cooking, ikebana, and baking classes. But she wouldn’t do any of those at home. Now that she is married, she has no choice. She even has to cook for her husband.

Q: Have you noticed any changes in society when you look at your wife’s experience and your daughter’s? Is society more caring towards people with disabilities now?

ZH’s father: I know nothing about my wife’s experience when she was young. When I met her, she already had a workplace taking care of her and was making money, even though she was making barely enough to get by. As for society caring for people with disabilities, right now we receive some subsidies for October 1st and Chinese New Year every year—200 or 300 yuan each time, nothing more, nothing less.

Q: So nothing fundamental has changed since your wife’s time?

ZH’s father: No, nothing has changed.

Q: Do you and your wife have a lot of siblings?

ZH’s father: My wife has five and I have three.

Q: Do you visit each other?

ZH’s father: I live at ZH’s grandma’s place and often visit my brother. My wife’s siblings visit ZH’s grandma a lot, so I see them quite often.

Q: Do you get along well with them?

ZH’s father: I get along fine with my wife’s brothers.

Q: Of all the uncles, aunties, and cousins that ZH has, is there anyone who is particularly close?

ZH’s father: On my wife’s side, she is close to her second brother and his wife because we used to live in the same complex. On my side, my elder brother and his wife are nice to ZH and don’t look down on her. The others live far from us and we don’t talk a lot, so there’s no feeling of closeness.

My wife’s elder brothers have kids who are all older than ZH. They all had jobs and no time to hang out with her. They knew about her intellectual disability and that she got sick easily and that they shouldn’t tire her out, but they didn’t know what to say to her for fear something would trigger her sickness… So, she didn’t see or talk to her female cousins often. Some of them were nice to her and she was happy about that, whereas some just ignored her. I figure that even in your own family, you will be looked down upon because you are the weakling.

I have several siblings, but they live far away, so I couldn’t take her to visit them often. Even when we visited occasionally, she didn’t fit in—because to speak, you will need your brain to react, and if you can’t talk coherently, your relatives will look down on you. She did hang out with kids who lived in the same apartment complex as us. Another way to look at it is that they all knew about her intellectual disability and knew not to bully her. That’s just how it was.

Q: Did these relatives have any influence on her when she was growing up?

ZH’s father: Her grandma took care of her, so they had little influence on her.

Q: Was grandma the one with the influence?

ZH’s father: Right. ZH is married now and her grandpa has passed away. Her grandma still gives her money sometimes for living expenses, so she is still helping her. Her grandma spoiled her too. Grandparents always spoil the grandkid if they all live under the same roof. The good thing about three generations living together is that the grandparents will help with childcare. The bad thing is that they’ll spoil the grandkid. How do we do a good job educating her as her parents? Being strict is helping her whereas spoiling her is doing her harm.

Q: Is she grandma’s youngest grandkid?

ZH’s father: Yeah… Oh no, there’s one after her. My wife’s youngest brother remarried and had a kid who’s younger than ZH.

Q: But is ZH still grandma’s favorite?

ZH’s father: She is, because my wife is the only daughter while all the other granddaughters are from her brothers. There’s no grandson. It’s weird that my wife has five brothers and four of them are married with daughters. Is there something wrong? A fortune-teller once told them, “Your mom had all the sons. Now you are all having daughters.” Now ZH has three female cousins who got married, two of them had kids and both are boys. This gender thing must have skipped a generation.

Getting Spoiled due to Childhood Sickness

Q: You found that ZH wasn’t in good health after she turned five. Did you take her to the doctor’s?

ZH’s father: We basically reported to the hospital once a month, whether it was the children’s hospital or a general hospital. It was something extra for me to do every month. I got very busy and tired with work, so sometimes her grandma would take her, since my wife definitely couldn’t do it. Then my co-worker referred me to a hospital that put her on daily medication. She was cured after 8 years. I often tell her that she has taken tons of medication in her life. Now that she doesn’t get sick anymore, I feel very happy.

Q: So she has healed?

ZH’s father: Right. But on the other hand, you can’t frustrate her or tire her out, and she can’t eat anything too spicy or too sour. My workplace had very strict rules, but everyone knew that I had family difficulties, what with all three of us having disabilities and ZH getting sick often. So the managers were very supportive and gave me time off whenever I had to take her to the hospital or get medication. After I got the medication, I would need to reimburse it and I always got priority reimbursement. The monthly reimbursement was about 200 yuan, so my workplace was really supportive of me because of my disability.

I always tell ZH, “Since you were five, the money daddy spent buying you medication could have been better spent buying you fruit. Fruit would have been more nutritious for you, whereas medication could have done you more harm than good.” You are more educated than I am, so you should know that medication doesn’t look good or taste good. You need to take good care of yourselves and rest well.

Q: What was her life like from preschool to elementary school?

ZH’s father: She was very bad with her hands at preschool. We didn’t let her do anything at home, so she was very slow, both physically and mentally, at preschool, like when playing with blocks. And she got sick and missed school a lot. The preschool teacher couldn’t give her one-on-one care because there were so many other kids at school, so we would drop her off in the morning and pick her up after lunch.

Q: What about elementary school?

ZH’s father: The same. She would doze off at school sometimes and it was actually caused by fever. I was born with a physical disability, but she wasn’t born with her disability. She got it from her mom, which is the only way I can explain it.

Q: Did she start taking care of herself when she was young, like brushing her teeth and dressing herself?

ZH’s father: Yes, she did all that by herself. At preschool, they were required to wash their handkerchiefs. She didn’t do it until she was seven or eight. She was born in September, so she was held back 1 year for school. Sometimes her mom would wash her handkerchief and that got her curious and eager to try. But she really just wanted to play with water instead of washing her handkerchief. I saw it and told her, “You are wasting water and not washing anything.”

Q: Have you ever taught her to read and write?

ZH’s father: I taught her to read and sometimes helped her with homework. She just wasn’t getting it. The way Shanghainese put it is that she refused to use her brain, and I would get mad at her for that. But she used her brain in other ways, like I was about to spank her and she would yell to get the attention of her grandma who would definitely take her side.

Q: Grandma really spoiled her.

ZH’s father: Right. She got sick a lot, so grandma spoiled her. I kept thinking that you have to be strict to raise a good kid and to help the kid do well at school, but she just refused to use her brain.

On what grounds did I apply for a disability certificate for her? She had to repeat one grade because she couldn’t keep up. And her sickness had affected her brain. So I took her for an IQ test and after the test, the doctor said that her IQ was lower than that of the average kid but much higher than those with ID. So I figured that her problem with homework was really that she refused to use her brain. For example, when the doctor showed her several pictures, people without disabilities couldn’t even tell what’s missing with the animals but she could, so how do you explain that? She scored 70 points which implied intellectual disability, and her disability certificate specifies Grade IV.

Why did I apply for a disability certificate for her? Because I had a tough job myself and wasn’t well paid. Keeping her in school would have been a huge expense for me every year, right? So to get her a disability certificate was to have society help take care of her.

Q: When did you apply for the disability certificate for her? Was it when she was in elementary school?

ZH’s father: When she was ten, in second grade, because she repeated a grade.

Q: Which grade did she repeat?

ZH’s father: First grade.

Q: Did she repeat any other grades later on?

ZH’s father: She wasn’t allowed to, because of the family financial situation.

Q: Was she failing academics before repeating the grade?

ZH’s father: Yeah. She wasn’t getting it or using her brain.

Q: Did she learn Chinese, math and English at elementary school?

ZH’s father: English wasn’t until later. Back then, she was learning only Chinese and math.

Q: And she wasn’t good at either?

ZH’s father: Right. She isn’t good at math. Even now, when she spends money, I would tell her, “I’ll give you 100 yuan and when you spend it, you need to do the math in your head to make sure you are getting the correct change back, do you understand?” She wouldn’t say a word. And I would take that as meaning that she knows how to mentally calculate whether she is getting the right amount of change when she spends money. I would also tell her sometimes that if she doesn’t spend wisely and doesn’t know how to calculate change, her husband would just carelessly pocket the change and 100 yuan would be gone just like that, and she should watch out for that.

Q: Were you the one helping her with homework when she got home?

ZH’s father: I had a long commute. We were living in Zhabei District back then. Transportation wasn’t as convenient as it is now, and Bus No. 69 was a tough line. On a good day, the commute took more than an hour. On a bad day, it could take close to 2 h. There’s no way I could help her with homework, so her grandpa would pick her up and help her, because her grandma isn’t educated. I would go home and check it. If it was okay, I would sign off on it, otherwise I would tell her to redo it when she got up the next morning.

Q: What kind of homework would you have her redo?

ZH’s father: Whatever she didn’t get right.

Q: So you would go over everything and make sure everything was correct?

ZH’s father: Right.

Q: Were you the one who was the strictest with her in the family?

ZH’s father: I had to be because there was no one else. Like I just mentioned, her intellectual disability isn’t really inferior intellectual ability. Her IQ isn’t really that low, so if she would just use her brain, she wouldn’t have needed the disability certificate.

What’s the real deal with my kid? First, she had this sickness which had affected her brain. Second, we had financial difficulties at home, and if she had stayed at school, it would have meant one more expense for me every year. That’s why I got her the disability certificate. I am not sure if you agree with me on this one. Do you think I did the right thing by getting her the disability certificate? Now that she has it, there’s actually backlash like being looked down upon.

Q: Did ZH get dropped off and picked up from school?

ZH’s father: At first, I dropped her off, then I let her go by herself, because after I dropped her off several times, she knew the way.

Q: Has she ever got into trouble on the way to school?

ZH’s father: She has. Some boys from school would bully her. They even bullied her at school and beat her up. She would come home and tell me about it and I would go to school and tell the teacher the next day.

At elementary school, there was a boy who hit her. I didn’t know about it but her grandma did. So the boy hit her and she came home crying. Her grandma went to school with her and asked for the boy. The teacher tried to reprimand him by telling him, “If you hit her and she gets sick, you will need to go get your mom to take care of her.” That’s one way. Another way the teacher tried was saying, “She has a lot of uncles. Her mom is the youngest with five older brothers, so she has five uncles. What will you do if they all come and beat you up?” After that tongue-lashing, the boy left her alone.

Some of the classmates said, “I am gonna hit you but you can’t tell the teacher, otherwise I will hit you again.” So do you think she dared to tell the teacher? Being a parent, I would of course tell the homeroom teacher, otherwise how could she survive seeing those boys at school every day? I told her teacher there was a kid in the class who was always hitting her. And that kid’s parents were not difficult to deal with. On my part, I am not the kind of parent who will ask you to compensate me for medical expenses or other losses when your kid hits mine. I didn’t care about any of that, but I did care if she got sick because of the bullying. So I just told the parents to cover whatever medical expenses their kid caused. That’s the bare minimum, right?

Q: Were there any teachers that she liked at elementary school? How did the teachers treat her?

ZH’s father: The teachers respected her. At elementary school, the teachers respected her. At Changning Primary Vocational School, there were also teachers who liked her. Why did they like her? Because she did whatever they asked her to do. She literally ran to do their bidding because she wanted to please them. Because of that, the teachers rewarded her and encouraged her. And at home, we kept telling her that she should behave in class and listen to the teachers. She was good in that regard.

Q: Which classes did ZH like at school?

ZH’s father: She liked PE.

Q: When did she start at Changning Primary Vocational School?

ZH’s father: After she graduated from elementary school.

Q: Was it after she graduated from fifth grade?

ZH’s father: Sixth grade.

Q: How long did she stay at the vocational school?

ZH’s father: Six years. It’s a vocational school where skills are taught in ikebana, baking, cooking, services, and management.

Q: When ZH was young, did you take her out when she wasn’t sick?

ZH’s father: I did.

Q: Where did you normally go?

ZH’s father: One place was Jiaotong Park, and another place was the Zoo where she could learn about the animals. Sometimes I took her to Suzhou to be on the water. I wanted to develop her intellectual ability and to have her see more of the world.

My father-in-law told me that when ZH’s mom was young, her parents couldn’t take her anywhere as both of them had to work, so she knew little about the world. Before I married her, her parents didn’t allow her out at all because they worried about her getting lost. When we were dating, I always took her out so that she could learn about the world. Like we would walk from home to Zhongshan Park and even now, she still remembers how to get home.

Once I learnt how ZH’s mom had been brought up, I made sure I always took ZH out. Sometimes I would take her out when she was feeling okay, then the next day she would come down with a fever. Her grandma would scold me, “The child just got better and you took her out, and now she is sick again.” But I believed that I should expose her more to the world. Her grandma didn’t like it that she got sick again and had to take medication and have shots, which wasn’t enjoyable of course. There’s a gap between her grandma and me, and another gap between me and her. That’s three generations for you.

Q: Can you elaborate on your trips with her to the Zoo? Did you want to teach her how to find her way around and to expose her to the world?

ZH’s father: You know we are being relocated by the government. I asked her where we are moving to and her reply was very vague, “Around Jiadingbei.” And where is Jiadingbei Road? She couldn’t tell. This shows a lack of education. I told her to try harder at school and she wouldn’t listen. Still, I kept reminding her to do it. Now that she is working, the same thing applies. Even though her intellectual ability is lower than that of other people, the workplace is where people work and if you work hard, people will recognize it, right? If I were the manager and you worked hard, there would be no reason for me not to recognize it. But what seems to be always on her mind is, “They don’t treat us as equals because we have intellectual disabilities. They are not even from Shanghai like we are, and they are bossing us around.” I believe that’s what she thinks.

Q: When she was attending Changning Primary Vocational School, did she mention any field trips during spring or fall?

ZH’s father: She did.

Q: Did she talk about how she felt?

ZH’s father: I asked her and she said, “I don’t know.” Bad memory goes with low IQ. Sometimes I would buy her candy and cookies for a trip in spring and she would eat them all. I would ask her, “What did the teacher ask you guys to do today?” She would say, “The teacher asked us to write about what we saw.” I would ask, “So what did you write about?” and she would say, “I have nothing to write about.”

Q: So the teacher gave writing assignments before field trips?

ZH’s father: It’s just to write down what you saw with your own eyes and she couldn’t do that. She would see something and forget all about it on the same day. That means that she can’t retain anything in her brain. That’s also why she has never liked math.

I told her, “Now you see that you do need Chinese and math in real life, right? Why didn’t you study Chinese and math harder when you were young?” She wouldn’t say a word. Like I mentioned before, when you don’t say a word, you try to give the impression that you know, but the fact is that you don’t know.

Q: Does ZH have any really close friends?

ZH’s father: Really close friends… I know about one now, from a good family. Her name is C and she works at McDonald’s. Sometimes she would call to check on ZH. When they were both going to Changning Primary Vocational School, this classmate often helped ZH.

Hoping to Work for Independence

Q: After graduating from Changning Primary Vocational School, ZH went to the Sunshine Home. What did she do there?

ZH’s father: She didn’t exactly work at the Sunshine Home. The teachers have disabilities themselves and just gave them some lessons, or sang or drew with them. At lunchtime, the teachers would buy groceries and ask them to help sort them out. That’s about it. She would hang around a bit in the afternoon before coming home, which was almost like going to school.

After she graduated from Changning Primary Vocational School, her grandma couldn’t babysit her anymore, so I sent her to the Sunshine Home. It was the year of the Asian Games,² 2005, wasn’t it? At that time, the Sunshine Home organized several sports meets and she won some events. She is very happy doing sports.

Q: Exactly which events did she win?

ZH’s father: One was table tennis, another was shooting basketball, and there was also some singing competition. The Sunshine Home organized those events and she won all of them.

Q: She plays table tennis very well. Does she go out to practice table tennis?

ZH’s father: No. She said that I sent her to a place she didn’t feel she belonged to and I said that she went to the right place. Why? Because the place trained her to be caring, just like the students and the teachers were caring towards each other. Don’t you agree?

Q: Why did she say she had no business going to the Sunshine Home?

ZH’s father: She said that it was a waste of her time. The vocational school found her current job for her whereas the Sunshine Home didn’t really help her. That’s her logic.

Q: So she had wanted to get a job?

ZH’s father: Right, because kids at the Sunshine Home have intellectual disabilities, like kids at her school. She felt that she should have a job and income so that she could spend her own money. I haven’t taken a penny from her since she started working and got married. I told her once, “If you give me 100 yuan every month now, I will give you 200 yuan every month after you get married.” That’s just my wishful thinking. She has never given me a single penny.

Q: So ZH spends the money she makes herself?

ZH’s father: Right, but she doesn’t make enough for her to spend, so she still sponges off me. I believe this means that she can’t manage her own finances, right?

Q: Back then, why didn’t she get a job right after graduation?

ZH’s father: Because nobody wanted her.

Q: You mean nobody referred her to any jobs?

ZH’s father: Right. There were recruitment notices posted around where we lived and I made inquiries. They asked me whether my kid is from Shanghai or from outside Shanghai. They didn’t want anyone from Shanghai. Why? Because Shanghai locals can’t handle tough jobs. And if you are from out of town and they hire you and provide room and board, they will be able to control your time and have you work however many hours they want, like 12 h a day or even 14 h. Since you are from out of town, you will have no relatives or friends in Shanghai and nowhere to go, so you will spend all your time working. That’s the logic. Even before I had the chance to show them ZH’s disability certificate, they told me they didn’t want anyone from Shanghai.

Q: When did she decide that she wanted to work at Papa John’s?

ZH’s father: The teacher from Changning Primary Vocational School referred her to Papa John’s. There was an opening in 2013 and that’s how she got in. The workplace is caring towards her and gave her a consolation prize at the skills competition, which made her pretty happy (see Fig. 1).

Fig. 1

Ms. ZH at work

Q: Does she have any close co-workers?

ZH’s father: You are writing this report in order to help improve their self-esteem, right? But the thing is that now, she finds it a bore to go to work sometimes. She would come home and tell me that at her workplace, the shift manager and manager are from outside Shanghai and they often ridicule and bully her. I would tell her that she has no choice but to put up with it. Even though society looks down on her, she must have self-esteem and be strong. I try to make her understand that she needs to be able to get along with her co-workers.

I told her that it’s not easy to make money now or to keep a job. Because of her disability, people look down on her. But she needs to value herself and to protect herself.

Q: Why is she reluctant to go to work? Because there are co-workers who laugh at her?

ZH’s father: Right, some co-workers laugh at her. Right now the shift manager and manager are from outside Shanghai, while she is from Shanghai. They sometimes laugh at her saying that she has low IQ and is not worth talking to. That’s what’s going on.

Q: Even the shift manager says that? When we visited the store last time, the manager was sweet talking, saying that everyone is equal in the store.

ZH’s father: Of course! When you interviewed them, they had to say, “We are all equal.” There’s no way they would tell you that they discriminate against anyone.

This is the fourth restaurant she has worked at. The previous two were shut down. She went to the store in Xujiahui at first, then switched to the one in People’s Square. There’s a Papa John’s near where we live too, but that one is franchised. The company wouldn’t let her work at a store close to home, but wouldn’t subsidize her for transportation or meals when it sent her to a store far away to work, which means extra expenses for her. Being her parents, we kind of expected that if the company doesn’t subsidize for transportation or meals, it should arrange for her to work closer to home, right? She doesn’t make much to begin with, and the extra financial burden… It wouldn’t have mattered as much if she were better paid, that’s how I look at it.

I wonder if you could talk to the store manager? The store has quite a few employees with disabilities and doesn’t really shortchange them on pay. So the management can be righteous about standard pay for everyone. But some workplaces pay for transportation and meals. So it would be ideal if ZH could work closer to home. Right now, she commutes 90 min one way which means 3 h both ways.

Q: Taking the subway is expensive too.

ZH’s father: Yes, it is, especially now that she has the baby. At 10 yuan both ways every day means 220 yuan per month. The store isn’t going to pay for this!

Q: Did she really mean it when she said she didn’t want to work at the restaurant anymore? Has she ever thought about what she would do if she quits?

ZH’s father: We talked about it and I asked her, “What will you do if you quit? Can you be your own boss?”

Q: She had no answer for you?

ZH’s father: Exactly. How can she be her own boss and handle her own management? She needs to be able to manage herself before managing others. If she can’t even manage herself, forget about managing others. She immediately spends whatever money she makes—how can she call that “making money”? It’s actually a waste. It’s wasting her energy. So I told her, “You don’t know better, so you can only be managed by others. Once you know better, you can manage others.”

Q: Is she making pizzas at work? How is she performing?

ZH’s father: I went to the restaurant she worked at before, not the current one, but the previous one which was on Xizang Road. I asked her manager and was told that she performed well at work but that her reactions were too slow. I said that’s to be expected since she isn’t completely there intellectually, so something’s gonna be missing, right? So I pleaded for more help for her, since there’s no way around it.

On the other hand, there are many people with ID in my neighborhood. They just stay home, without a job and living on minimum government subsidies, whereas ZH goes to work every day. Companies usually offer at least one free meal a day as part of the benefits, but Papa John’s doesn’t. It just provides the bare minimum required in Shanghai. ZH is married now and I don’t know how she and her husband are going to sustain the family. They actually can’t, so they look to us for help. They really shouldn’t after they got married, but she still does. I often tell her, “You should have married a better man. Why did you marry someone who doesn’t make more money than you?” I still have money to support her, what about when I don’t?

Q: Right now, a lot of people with disabilities just stay home and live on minimum government subsidies. Is that what you want her to do too, or would you rather she go out and work?

ZH’s father: I prefer that she go out and work and be exposed to society. If she stayed at home on minimum government subsidies without human contact, she would be isolated from everyone.

Q: Does she have any interests when she is home?

ZH’s father: When she was going to the Sunshine Home, she would do embroidery when she got home. It’s sort of a hobby, but I don’t really think much of it.

Bittersweet Marriage

Q: How did she meet her husband?

ZH’s father: A classmate introduced them. You know, all of her classmates have intellectual disabilities and don’t really know better. I tried to find someone for her but she wasn’t interested, and now you see what kind of life she ended up having.

Q: Does ZH’s husband have any disabilities?

ZH’s father: ZH’s husband… He has disabilities by my standards.

Why do I say that? When they were dating, they seemed to be spending every day together. I asked her, “You are together every day. Are you trying to bond, or talking about what’s happening in the world, or discussing your future?” She didn’t know what to tell me.

On her days off, she would go to his place around 9 a.m. after having breakfast and come home at 9 or 10 p.m. I said I never spent such a long day out and about with her mom when we were dating, so how come she can stay out for so long? If both were highly educated, then they would have a lot to talk about. But I don’t think that’s the case with ZH and him. I found out later that he had dropped out of school at 16, which is telling about his IQ, right? They both enjoy good physical health, but the mind isn’t quite there.

Q: Does her husband have any kind of medical certificate?

ZH’s father: No. I only said that about him because you asked me.

Q: Do you know which school her husband dropped out of?

ZH’s father: His parents worked in Anhui, so he grew up in Anhui and didn’t come to Shanghai until he turned 16.

Q: So he moved to Shanghai after he was done with school?

ZH’s father: Right.

Q: Did he start working as soon as he moved to Shanghai?

ZH’s father: Not immediately. The community found him a job later.

Q: So he stayed home for a while, but the community arranged a different kind of job for him than the one ZH got?

ZH’s father: Right, he enjoyed some special treatment because his parents had volunteered to work outside Shanghai. If you were highly educated, you wouldn’t need the community to arrange anything for you, you could just get a job with your degree. So when you asked me about her husband’s IQ, I figured it can’t be too high. What do you think?

Q: Are both your in-laws originally from Shanghai or is one of them from Anhui?

ZH’s father: His dad is from Shanghai, he went to work in Anhui, and his mom is from there, that’s why he qualified for special treatment.

Q: Do they talk in Mandarin at home?

ZH’s father: Yeah. His mom talks to his dad in Anhui dialect, he talks to his dad in Mandarin, and ZH talks to her husband in Mandarin.

I kind of think he should have been taught Shanghainese. His dad is from Shanghai, so why should they speak Mandarin? But he couldn’t learn because he isn’t that smart. For example, the Shanghainese for a cup is “Be Zi”, but he can only say “Bei Zi” with some kind of tongue twisting. Simple things like this, he just can’t learn—what can you do?

Q: What does her husband do?

ZH’s father: When they were dating, I knew that he was on the cleaning crew at Xujingdong Station of Subway Line 2. After they got married, he worked on the cleaning crew at the Shanghai office of a Singapore company, now he works in security at Food Plaza in Xujiahui.

Q: Do you know how long they dated?

ZH’s father: Three years.

Q: When did you know about their dating? From the very beginning?

ZH’s father: I didn’t know about it until 18 months later.

Q: Did she bring her boyfriend home to meet you?

ZH’s father: No!

She used to come home from work on time, but then she started coming home late. So I needed to find out what was going on. Her mom and I went to wait for her in front of the restaurant she was working at, the one close to Shanghai Indoor Stadium. We saw her coming out but she didn’t see us. The two of them got on the bus. They were totally into each other and didn’t even turn their heads. They were sitting in the front row and her mom and I were sitting in the back row.

Q: So both you and her mom went to wait for her? (Laughing)

ZH’s father: We did. They took No. 808 bus from the stadium. Supposedly the lady should come home first after being picked up from work by the guy, but she took him home first before coming home herself.

I asked her, “What’s going on with you?”

She said, “I went out for a bit.”

And I said, “You were not telling the truth. I saw you and him on the bus. Your mom and I were sitting right behind you!”

I asked her again and she told me the truth. The guy is older than she is. I asked where he worked and what he did for a living, and she told me he was on the subway station cleaning crew. Now he works in security. Both are jobs for people who are not well educated. If you have a good education, do you think you would work at jobs like those? Cleaning crew and security are jobs for the elderly like us, not for young people from Shanghai. So when you asked me about his education level and IQ, it’s easy to tell.

Q: When did they get married?

ZH’s father: In 2015.

Q: That’s when ZH was 27?

ZH’s father: Right. I didn’t want to give them permission, but her grandma was on me about it. Her reasoning was that ZH hardly spent any time at home, so it’s better to marry her off to keep her out of trouble. I had no choice. Now that she is married, she regrets it. I told her that she shouldn’t have got married and shouldn’t have spent all that much time with him before getting married.

I don’t find it shameful to tell you this. I asked her, “Why did you date this guy?” Do you know what she said? She said, “All three of us in the family have disabilities and he didn’t mind that. What more could I expect?” I said, “You look down on yourself and have no self-esteem! Are you expected to support your mom and me?” Even though I have a disability, I walk normal and work alright even though my speed is half that of my co-workers. I said, “Your mom takes care of the house even with her intellectual disability.” She looks down on herself, what do you think?

I had tried to find someone for her but she didn’t want it, she only wanted that guy. I was against them dating and they coaxed me into agreeing to it. I don’t mind telling you this… on the night of their wedding, I cried my eyes out because I knew that she would suffer in the marriage. Why would anyone marry down when she grew up spoiled?

Q: You didn’t want them to get married because you didn’t think they were in a position to do so?

ZH’s father: The first reason was that they both have intellectual disabilities; secondly, they didn’t have the money, and lastly they didn’t have a place of their own. A lot of government-mandated relocation is going on right now, you know, like around Tianshan Road, Loushanguan Road, and Furongjiang Road.

Q: Where do they live now?

ZH’s father: With the husband’s family.

Q: Is it far from here?

ZH’s father: Not far. I live on Loushanguan Road and she lives on Gubei Road, literally across the street from me.

Q: Did she help around the house before she got married?

ZH’s father: No. Do you think anyone in the house would have asked that of her?

Q: So grandma did a lot?

ZH’s father: Yes.

Q: You just mentioned that your wife takes care of the house and ZH didn’t help. Did your wife do household chores before getting married to you?

ZH’s father: Rarely.

Q: So she gradually picked that up after getting married. Wasn’t that the same with ZH?

ZH’s father: Yes, it was. That’s the way it is in big cities now. They live with parents before getting married and are spoiled. Once they have their own families, they have to be on their own and can’t expect parents to follow them there to be nannies.

Q: A lot of people are like that now.

ZH’s father: It has nothing to do with whether they have intellectual disabilities. My wife’s elder brother used to live next to us. After he bought his own place, a tenant moved in. The door is left open sometimes and I see how messy it is inside. That’s bachelors for you. Once two people get married, I am sure the husband will force the wife to do things around the house and the wife will force the husband to do it. ZH didn’t do anything while she was living with us. Now that she has her own family, she has to buy groceries, cook, and do laundry for her husband. It’s the same with you, isn’t it?

She doesn’t come over to our place to eat after she got married. She shops and cooks at home instead. I said, “You didn’t do grocery shopping or cook at our place. Now you do it all since you have your own family?” And at Changning Primary Vocational School, she did learn baking, ikebana, and cooking. I made sure that she learnt all of that at the school, and she has graduation certificates for all of them. Also, when she came back from the Sunshine Home, I asked her on Sundays to go buy groceries, because since she had learnt how to do it, she should practice it at home. But she wouldn’t do it. So what do you want me to do with her?

Q: Have you ever had anything she cooked?

ZH’s father: Yes. Fried rice, very simple, and fried eggs with tomatoes. As long as she cooks, I won’t be picky. I don’t care too much about taste. My mother-in-law won’t eat anything I cook. I have high blood pressure and diabetes, so I can’t eat cakes like this (pointing to the cheesecake on the table). I don’t use MSG when I cook because it’s harmful for the human body. I don’t use sugar either, which isn’t what my mother-in-law is used to, so she says I don’t cook well. I can’t do anything about it. She used to buy groceries and cook, but now that she is old, I have taken over.

I worry about ZH every day now. How is her own family going to survive? I always tell her, “You have to spend money as soon as you open your eyes, and since the two of you together make just a little over 5,000 yuan a month, how do you get by? And you have the baby too.”

I helped her a lot with her wedding. She wanted a nice one, so I had no choice but to give her a nice one. Her husband’s family wasn’t as generous. They were welcoming a daughter-in-law instead of stealing a woman, and they wouldn’t even celebrate with firecrackers, isn’t that pathetic? I tried to reason with her father-in-law and he said, “We are trying to save money.” But you shouldn’t skimp on this kind of thing. It’s okay if you are thrifty in life, but you need firecrackers to tell people that your son is getting married. Skimping on firecrackers wasn’t saving money, it was penny-pinching (raising his voice)! Don’t you agree?

Q: By “helping her a lot,” you mean you prepared dowry for her?

ZH’s father: I did. She told her husband, “My dad bought us a fridge and microwave. Why didn’t your dad do it?” I told her, “That’s the face I gave you. You could have bought them yourself if you had had money. Since you had no money, your parents had to make it decent for you somehow.”

And ZH’s father-in-law is really cheap, I was so mad at him. On the wedding day, I asked him, “Do you have a car for the newlyweds to ride in?” The answer was “No.” I said, “You can rent one.” And he said he had no money. So I ended up borrowing a car and sending her, after she had makeup put on, to her husband’s place. I also made sure to light firecrackers when she left my place, but there were no firecrackers to welcome her.

This really shows that she isn’t that smart. Before she got married, she spent all that time at his place and gave everyone the wrong impression that she was already married. So the neighbors would be surprised at the firecrackers on her real wedding day. And her father-in-law is Christian. But what do firecrackers have to do with Christianity or Buddhism? His son was getting married and he was afraid to let people know? Lighting firecrackers shows joy and invites others to share the joy. And you know what he said? He told ZH, “I can’t buy the firecrackers anywhere.” How could he have said that? His son was getting married so shouldn’t he have made preparations? How could I not be mad at such an in-law? I know he isn’t rich, but he isn’t that poor either. He made me feel that the marriage was not to see the light of day and that my daughter wasn’t really worth it.

Q: In a lot of marriages now, one person will be in charge of finances. Is that the way with ZH and her husband? Or do they make their own money and spend their own money?

ZH’s father: Before they got married, I sat down with her father-in-law and discussed who should be in charge of finances. Her husband said that ZH should do it, and her father-in-law agreed saying that the wife should do it. But what they do right now is that they keep their own pay and contribute 1,000 yuan each towards living expenses, which is called “going Dutch.” You guys are all fancy and learned all sorts of fancy things from the Americans. But who pays for the baby’s expenses? I don’t know.

Q: So you think it’s better that one person manages family finances?

ZH’s father: Too right! She tells me sometimes that her husband is stingy. Every month after he gets paid, he will give her 300 yuan to deposit into savings. That is nothing nowadays. So it means that they don’t make much and can’t save much. Three hundred yuan per month means 3,600 a year which is less than what I make per month.

ZH had maternity leave after having the baby and received a lump sum from social security. They didn’t understand what the money was for, so they spent it all. So ZH went back to work after the 4 months’ maternity leave and the workplace started deducting from her pay the social security money she had received. She ended up with almost no take-home money. You guys are probably going to have this issue later on. If they receive money from social security, new moms won’t get any from their workplace. Maternity leave is 128 days, so for more than 4 months, you will have to pay towards your own social security from your salary.

I asked her, “What did you do with that lump sum?” She said she had spent it all on traveling to Beijing and Anhui which is where he used to live. I said, “That’s unbelievable. You don’t care what happens next?” So there you go.

And being the parents, we end up paying the price. She often comes to me asking for money, because she doesn’t have enough for food and other expenses. Her husband won’t even give her money for doctor visits. And she doesn’t seem to mind. Whatever extra money she has, she spends it with her husband doing whatever they want. When the money runs dry, she suffers. She is supposed to save extra money instead of spending it, but she just doesn’t get it.

If she were better educated, she could be working at a better place now and not still sponging off her parents. I had wanted to find her someone but she resisted and insisted on doing it herself. But then parents can’t really arrange marriages. They won’t like it because they want to marry someone of their own choice.

Q: You said that her husband won’t give her money for doctor visits. Doctor visits for whom?

ZH’s father: For ZH.

Q: What for?

ZH’s father: For the pregnancy. She had diabetes during the pregnancy and was hospitalized, but she couldn’t pay for it. Her husband asked his dad for help and his dad said, “I don’t have money. Aren’t her parents loaded? Go ask them.” So he called me at night. I was still working after she got married, so I took a half day off just to deliver the money to her. She is my daughter, I wouldn’t have done it for anyone else.

Even though I gave her the money, I made it clear that I was unhappy about it, about the status of her marriage and about her still taking from her parents.

Q: When was the grandchild born? Boy or girl?

ZH’s father: March of this year, a girl.

Q: Were you hoping for a boy or a girl?

ZH’s father: I had wanted her to have a girl, because girls listen better, right? I mean you spend more on girls than on boys. Girls need more and different kinds of clothes whereas boys can always wear the same things, so girls cost more, right? I am just telling the truth and not hiding anything.

Q: You were happy when the granddaughter was born, weren’t you?

ZH’s father: I was happy, but it’s a burden financially. They don’t make much and the baby is one more mouth to feed. She didn’t have enough breast milk, so the baby needs formula each month which is very costly. I don’t know how they handle it with the money they make.

Q: How does she take care of the baby?

ZH’s father: Her in-laws do it most of the time. When she was on maternity leave, she helped. Now that she is back at work, there’s no choice.

Q: Is the granddaughter healthy?

ZH’s father: She is very healthy now, but I am not sure about the future.

Q: When I interviewed ZH last time, she said that her number one requirement as a spouse was being nice to parents. Do you feel this from your son-in-law?

ZH’s father: No, I don’t feel it.

Why? ZH had a fight with her husband at home and said her father-in-law was mean to her. Her mom, of course, wanted to protect her, so she called her husband. Her grandma ended up talking to her husband on the phone, saying, “What’s wrong with your dad? Why did he fight with ZH?” And you know what her husband said? He said, “There’s nothing wrong with my dad. There’s something wrong with everyone in your family.” And he immediately hung up. I didn’t get on the phone with him. Do you think that was being nice to the parents?

Also, from the time they got married to now, he’s only visited me three times including the wedding in 2015 and Chinese New Year of 2016. His parents were in Anhui then and ZH was pregnant. So I asked both of them to come to my place for New Year’s Eve dinner. That was the first time. The second time was when she had the baby and they came to my place together. The third time was November of last year. They were being relocated by the government and ZH came to my place. I said that it was getting cold and they should take the baby’s clothes with them, so she asked her husband to come over to do it. When they visited during Chinese New Year of 2016, he brought a box of dried fruits. And he was empty-handed the other two times. I don’t really want anything from them, I just hope their marriage is peaceful.

ZH wants a divorce now. Why? Because the marriage isn’t working anymore.

Since you are taking the trouble to interview me, I’m not shy about sharing and telling you what’s really going on.

A Dad with a Physical Disability and Strong Will

Q: Was there anything really memorable from when she was growing up?

ZH’s father: Not really.

I tried to be strict with her but her grandparents were always defending her, so how could anything be memorable for me? I was constantly telling her that she must be strong herself to not be looked down upon. If you are not strong, you will be bullied.

Right now, she doesn’t have the baby with her since her mother-in-law is taking care of it. She is supposed to take care of the baby herself since it’s her baby. But she drops in on me and sweet talks, “I want to see you and see grandma.” Then you should have brought the baby with you. But she never does. I am not belittling her, but she isn’t responsible for herself when she should be.

Q: Can I ask what expectations you have for her and for society?

ZH’s father: For society, like I said at the beginning of the interview, I hope people without disabilities won’t discriminate against people with disabilities. Discrimination isn’t helping people with disabilities. It’s damaging them and posing difficulties for them.

I want to tell you something about myself. I have a physical disability. I am a member of the Communist Party. The party doesn’t just take everyone, you will have to prove yourself. I have been on radio and in newspapers, and I was recognized for work dedication by the National Workers’ Association. With my physical disability, if I hadn’t tried so hard to prove myself, I wouldn’t have received any recognition. I see myself as someone without a disability, that’s how I can be where I am now.

I am not exactly well educated. I told my son-in-law that at his age, I was still going to night school. I graduated from middle school without any certificate, so I went on to secondary vocational school. That’s why I didn’t focus on family all the time. You can get a pay raise for finishing middle school, and another raise for finishing secondary vocational school, so that’s what I had wanted for myself. But I got lucky in that my mother-in-law helped at home. I asked him to get some more education that can bring in more money. He just keeps changing jobs, from cleaning crew to security. (Laughing)

Q: You have had an exceptional life. Can you tell us more about it?

ZH’s father: I went to a regular elementary school. My parents lived in Zhabei District, so I went to whichever home school I belonged to in that district.

I had special treatment for middle school and was allowed to go to the one closest to where I lived. I graduated in 1974 without any job arranged for me. I was frustrated staying home. I had turned 18 after all and should have got a job, but there was no job for me.

Back then, jobs were arranged by a countryside civil affairs office. I would walk 30 min to the office after breakfast at home every day and come home after everyone had had lunch. I found someone in the office who told me that all the new graduates had already got jobs and there was nothing the office could do since it had returned my paperwork to my local community office. Still, I tried to connect with them saying, “It’s okay that all the jobs were gone. I will wait a year.”

Q: Why hadn’t the office arranged a job for you?

ZH’s father: Because of my disability, of course. I was discriminated against. For new graduates in 1975, there was a mandatory ratio of 1:1 between people with and without disabilities. For example, it’s not okay for a workplace not to have employees with disabilities. It had to take in some. Nowadays, if the ratio is not satisfied, workplaces will have to pay money to the Disabled Persons’ Federation (DPF).

Q: So the benefits are improving little by little.

ZH’s father: Right. At Papa John’s where ZH works, the percentage of employees with disabilities is considered very high, because the company doesn’t have to pay money to the federation and enjoys tax deductions. It wasn’t the case in my time. People with disabilities were discriminated against.

I stayed home for a year. There was a person on my block who was in charge of arranging jobs. I talked to him and he said he would help me. Then new graduates came along in 1975, and I talked to the community office and submitted my paperwork. Two months later, almost everyone except for me got a job. I asked my neighbor if he had picked up my paperwork and he said someone else had taken it.

There was someone my dad used to mentor who was a leader in a government bureau. He went to my dad’s workplace to inspect work and saw my dad. He asked my dad how things were at home. My dad didn’t mention our housing issue—instead he said that I hadn’t got a job. So this person took my paperwork and that’s how I started working. Otherwise where could I have got a job? Selling chips at a bathhouse or diner? Bathhouses used to be owned by the state, now they are all run by private parties.

My workplace was right next door to where I lived. At home, I could hear the bell ring in the workday. That was the arrangement. Someone in charge of hiring met with me to check what I could do. So how did he check? He asked me if I could pour a bucket of water. I have one good arm, so I lifted the water with no problem. That person saw that I could get things done and just hired me.

I was put in charge of the warehouse of the factory at first. After a while I was transferred to the company’s warehouse. We made shadowless lights for hospitals and I was in charge of all the parts. I knew where each part belonged just by looking at it. I also got creative with the packaging. Back then workers were paid according to the amount of work done. The team leader would assign different workers to different work processes and count how many parts they made each day. So I would lay out the materials for them like a chef setting out ingredients in the kitchen. I took this extra step and made all of them happy.

The person my dad used to mentor got this job for me and I think I did my parents proud. My grandma helped me with dressing and washing till I was eight, then I decided that I had to do everything myself and to study, because one day I would need to live on my own. When I was going to school, my homeroom teacher had a difficult time teaching me because she was using her right hand to teach me to write with my left hand. Everyone was writing from left to right and I was writing from right to left. I didn’t learn how to write certain words till much later.

I make my own shoes now. My grandma used to make them, but she used cloth for the sole which got soaked whenever it rained. Then there were vendors making leather shoes in the neighborhood but it didn’t really help. When I was young, my grandma would carry me on her back to school. After she passed away, my mom made me shoes. After my mom passed away, I started making my own shoes. ZH’s mom doesn’t know how to do it, nor does ZH, so I have to do it myself. There are no shoe factories that will make them for me, and even if there were, I wouldn’t be able to afford it. Other people can just go out and buy shoes at reasonable prices, but the prices will shoot up if the shoes are customized for me. I haven’t found anyone who can make shoes for me, and I can do it myself anyway. But what will happen when I can’t do it anymore?

Last week I went to buy a piece of leather and the vendor asked for 500 yuan. I told him that I am not a businessman and that I was buying it for my own use, so he lowered the price to 300 yuan.

Q: He asked for that much at first?

ZH’s father: He has to run a business, so it’s normal. He had thought I was a businessman too and that he could make money off me. I told him it was not the case. He looked at my shoes and decided to do me a favor.

Q: So he was pretty nice after all.

ZH’s father: Right. There are many nice people out there and a lot of caring for people with disabilities.

Q: Compared with old times, would you say society is gradually changing for the better?

ZH’s father: Yeah. But as you can see from WeChat, some of the beggars on the street are just pretending.

Q: Right, they just pretend to have disabilities.

ZH’s father: And they have whole organizations behind them.

Q: They try to get sympathy by pretending to have disabilities.

ZH’s father: That’s just wrong and if they are caught, they will be sent out of Shanghai. People with real disabilities receive government support. If you don’t know, you will give the con men what they want. If you know, you will definitely not give them a penny.

WeChat also carries all the stories about kids being abducted and sent out to be beggars when they turn eight or nine. That’s child abuse. Society today isn’t really that good, but isn’t that bad either since there are things that are helpful for people with disabilities.

Q: Let’s come back to your life story. So you were doing very well at work.

ZH’s father: Right. When I graduated, I wasn’t even a member of the Red Guards. In elementary school, I was in the Children’s Guards, but when I graduated from middle school, I wasn’t in the Red Guards. Why? Because if you were not native and people didn’t know you well, there was no chance for you to shine.

Also, I figured that I had a disability, so it was impossible for me to be with people without disabilities. They would definitely look down on me, so I’d better not try to hang out with them. So I kept my distance and didn’t exactly mingle with kids from school. That’s also why I didn’t participate in any Red Guards activities in middle school. If I had, I would have moved on to the Communist Youth’s League. I didn’t join the Communist Youth’s League till I started working, not only because I was in charge of the warehouse but because I was active in the Workers’ Union. I was actually on the management team at the union.

Q: What did the Workers’ Union normally do?

ZH’s father: The Union oversaw library management including magazine and newspaper subscriptions. I used to be in charge of giving out movie tickets. We also organized table tennis and chess games and I kept track of all the rackets and nets. If some people wanted to play during lunch break, they would come to the union.

I received some certificates of merit which I have brought with me. (Showing the interviewers the certificates.)

Q: You were not only doing well at work but also actively participating in Workers’ Union activities?

ZH’s father: Right. These certificates are historical documents, aren’t they?

Supposedly I shouldn’t have shown them to you since they are past glory. They were issued by the National Workers’ Union. I have only one good arm, and I used to tell my son-in-law, “We didn’t have any certificate when we graduated from middle school back then. Then I went to work at a factory. The factory sent people to schools if they had no certificates. First middle school, then secondary vocational school. So I graduated from a secondary vocational school.”

Q: Did you go to the secondary vocational school in the evenings?

ZH’s father: On my days off and in the evenings. So after ZH was born, my mother-in-law took care of everything and I didn’t have to do anything at home.

After I graduated from the secondary vocational school, I got a pay raise of 30 yuan. So I like to say that with better education, no one can rob you of your knowledge and you get higher pay at that.

Q: When you were going to the secondary vocational school, did you meet anyone you really bonded with?

ZH’s father: I went to the school with co-workers from the factory.

Q: Were all of your classmates from the same factory?

ZH’s father: Right. The company arranged for employees to get their middle school graduation certificates. Whoever wanted to get it would let the company know, and the company would get everyone together to go to the same school.

Q: What did you study at the secondary vocational school? Management or something like that?

ZH’s father: Management, yes, like corporate management and financial management. There were also math and Chinese classes. After you got the middle school graduation certificate, your pay went up by 3 yuan. Back then, pay raises depended on your job title. Once you graduated from secondary vocational school, your pay would go up by 30 yuan and you would qualify for getting an official job title. I was in charge of the warehouse and got the title of financial assistant. If you worked on the shop floor, you would have the title of technician before you could get a pay raise. Pay raises were not given easily.

I tried to talk to my son-in-law but he refused to listen saying, “Your time was your time and our time is our time.” He is happy just playing on his cell phone, and if he doesn’t want to listen to me, there’s nothing I can do.

Q: So you encouraged your son-in-law to resume schooling.

ZH’s father: I did. I told him that I tried really hard back then. I would get home sometimes at 10 p.m. and leave again at 6:30 a.m. the next morning. Who did I do it for? For the family. ZH’s mom didn’t make much, so what could I do? She had an intellectual disability, so I had to accept that. I have a good IQ, so I should be the one to study. So after I got this award, I was invited to join the Communist Party. I joined in 1983 and have remained a party member since.

Q: You are a senior party member.

ZH’s father: Right, I am supposedly one.

Q: Back then, only the most enthusiastic and the best could join the party, right?

ZH’s father: Right.

Q: You mentioned that pay raises back then depended on your job title. So you got a pay raise because you were performing well at work?

ZH’s father: Right. Because you were doing a good job and delivering results, people recognized it and gave you pay raises. Without any results, there would be no recognition. Also, the leaders at the workplace alone couldn’t decide on pay raises. The organization had to have meetings to make such decisions.

Q: When did you get on radio and in newspapers?

ZH’s father: That was in 1983, around the same time that I got the certificates of merit.

Q: Did you get interviewed for radio and newspapers?

ZH’s father: I did. I was interviewed at my workplace.

Q: Were you the only one to be interviewed?

ZH’s father: Yes, I was. That meant that I was outstanding at my workplace. I had a certificate from the bureau, right? So I was picked on the bureau level before being recommended to the state level. After I got the certificate from the bureau, Shanghai People’s Radio Station came to interview me.

Q: Was the interview broadcast on radio?

ZH’s father: It was.

Q: So your certificate of merit had to be approved at different levels.

ZH’s father: Right. First the workplace, then the company, then the bureau, and eventually the state. My mother-in-law saw how busy I was and how little time I got to spend at home. Then I brought home the certificate to show her and she understood that I had not been busy for nothing. I also got a pay raise. Still, my workplace subsidized my pay every year. Because ZH got sick a lot which meant I had medical expenses. I could reimburse 50% of the expenses whereas the rest was from my own pocket. She had to see a doctor every month, otherwise she wouldn’t feel well, so I had medical expenses every month.

Q: What do you do at home now that you’re retired?

ZH’s father: Now that I’m retired, I sleep late in the morning. I will wake up but will just stay in bed and not get up till 8 a.m. After freshening up and having breakfast, I will go out for groceries with ZH’s mom. Then her mom will do the washing and I will do the cooking. If I have time in the afternoon, I will play poker.

My place measures 16 m² with three people living in it. I don’t watch what they watch on TV and they don’t watch what I watch.

Q: What do they watch?

ZH’s father: They like to watch the same thing over and over, like Princess Huanzhu and Love in the Rain. I asked them why they want to watch that every day. I don’t exactly watch but I already know the plots.

I like to watch war movies and movies about history and about what China has gone through. But they don’t like to watch. Japan invaded China but with all the Chinese traveling to Japan and helping with the Japanese economy, aren’t those Chinese slapping themselves across the face? If you want to beat Japan, you shouldn’t travel to that country. You are contributing to the Japanese economy, then who is contributing to ours? And not all of the people traveling to Japan are clueless about that part of history. Some of them know that Japan invaded China and did awful things to the Chinese people. Another theory is that you don’t have the money. If you had the money, you would be going (to Japan). A lot of Shanghainese go to Japan to work, in much the same way as the people from outside Shanghai are coming to Shanghai for jobs.

Q: People also go to Japan for school.

ZH’s father: I don’t believe the school part. They really just go for jobs. School costs so much—how can the parents afford it? I am just telling you what I think. You decide whether I am talking about something touchy and whether to keep or delete what I have said.

Q: You are very proactive and independent in thinking. Have you ever asked ZH to resume schooling?

ZH’s father: I already gave up on her. Why? She has a baby now and has to take care of the baby. She has a family too, so how can she go back to school? She doesn’t even know, and refuses to learn, even basic math like addition, subtraction, multiplication, and division, so how can she learn anything else? A foreign language? Learning a foreign language needs a nimble tongue and clear enunciation which is beyond her. I am her father and I know about her IQ even though I am not happy about it. If she can do it, she can do it. If not, then so be it.

Q: Do you think it’s a matter of personal abilities or of attitude?

ZH’s father: She doesn’t want to learn.

Q: So it’s mainly a matter of attitude?

ZH’s father: Right. We were born in the 1950s and like to carry on good things. The next generation is not like us. People like us who were born in the 1950s have both living parents and kids and even grandkids. Don’t I have a granddaughter myself?

Q: So to sum up what you have said, on one hand, society should help people with disabilities, and on the other hand, people with disabilities should be strong and independent.

ZH’s father: Right. Like I just said, my grandma was still helping me dress when I was eight. But then I figured that I would have to live on my own, so I should be strong.

Back then, after my interview, the news story described me as “having disability but not a weak mind.” You have to want to be strong. Without the will, you can’t be strong.

ZH has failed with her marriage. She had low standards to start with because she figured that there are three people with disabilities in the family and she couldn’t really afford to be picky about a husband. But she should have been strong. I told her that as her parents, we wouldn’t live off her but we might depend on her to take care of our lives. For example, if I pass away before her mom does, she will definitely have to take care of her mom. That’s just for daily life, because we have pensions and won’t need financial support from her. But she had thought that we needed support for both money and daily life. I told her she was wrong in thinking that way which had misled her into marrying that husband of hers. Would you have been happy with such a husband? You want someone who can support the family and has a sense of responsibility, not someone who is just killing time and wasting life.

Q: Even with a disability, you should see yourself as someone without a disability and try to improve yourself. And hopefully people without disabilities will treat people with disabilities as equals.

ZH’s father: Right.

Q: Thank you for the interview.

Interview with ZH’s Co-Worker (I)

Interviewee: Co-worker at the restaurant

Interviewers: Chenyi Tang and Zhuojun Zhang

Writer: Chenyi Tang

Interview date: October 28, 2016

Interview place: Restaurant where ZH works

Q: Can you please tell us your position at the restaurant?

Co-worker: I am a team leader. I am in charge of the kitchen and allocating workers and resources.

Q: ZH is an employee being cared for. How many employees being cared for do you have at this store? And what do they each do?

Co-worker: We have four in total. There’s W who makes pizza dough, there’s ZH who makes appetizers and pizza dough, and there are another two who make appetizers.

Q: Exactly how are the appetizers and pizza dough made?

Co-worker: You knead and toss the pizza dough before making pizza, those are the only two steps. Appetizers refer to corn chips, chicken wings, and so on. We have standards and it’s very simple to make them following the standards.

Q: Which is more complicated to make, appetizers or pizza dough?

Co-worker: Pizza dough is more complicated. Ingredients for the appetizers are more complicated.

Q: Why do the other three only make pizza dough or only make appetizers whereas ZH makes both?

Co-worker: I don’t interact with her a lot. She is a native employee here³ and I have only known her for about 2 months. We have fixed stations for working and she often works at two stations, so she knows how to work at both. She works pretty fast.

Q: How is ZH performing compared to the other three?

Co-worker: They are equally good and perform equally well.

Q: Was she already doing very well when you joined this store?

Co-worker: She was.

Q: How do you treat her now? Like any other co-worker?

Co-worker: Yes, we treat everyone the same and we don’t give her any special treatment just because she is an employee being cared for.

Personally, I don’t see any difference between employees being cared for and other employees. I have met a dozen or so employees being cared for and the only difference is that they take in things slowly. But then, some people without disabilities do that, too, either because they are slower by nature or just lazy. So I don’t treat employees being cared for any differently and I have the same expectations for them as for any other employee.

Q: I think it’s better for their self-esteem that way.

Co-worker: Sometimes we’ll joke with W about them being employees being cared for, and they seem to have grown numb to it, so they don’t really mind. Sometimes they are actually the ones making such jokes.

Q: When do they usually receive compliments?

Co-worker: We will compliment them on outstanding performance at work and on scoring high on evaluations. The truth is that we do the same for any other employee and they don’t really receive any special treatment.

Q: You mean that they don’t receive more compliments just because they are employees being cared for.

Co-worker: We don’t treat them as minors. We treat them as grown-ups.

Q: Did anything strike you in particular when you interacted with them? How do you get along with them?

Co-worker: We get along very naturally and there’s nothing special about it.

Q: So the employees being cared for mingle with everyone instead of keeping to themselves with an “us and them” mentality?

Co-worker: Right, we don’t group separately.

Q: Do you have any activities together after work like going somewhere for fun?

Co-worker: We eat out together. But the truth is that we get tired at work and don’t do much after work. And we usually work from 10 a.m. to 10 p.m., so it’s not easy to go anywhere together. Right now we are understaffed and have to work every day, so we just take it easy at home whenever we get time off.

We do go out for group dinners sometimes, but the parents of the employees being cared for tend to worry, so those employees normally go home earlier. It’s not that we exclude them from our activities. It’s just that their parents worry they will not know the way home if they stay out too late, so there’s nothing we can do. Even if they stay out late, they will still go home earlier than the rest of us and seldom stay past 9 p.m.

Q: Does the restaurant organize any annual meetings or travel?

Co-worker: Non-management employees seem to just get bonuses. The restaurant won’t arrange for everyone to be out at the same time, because there needs to be people working at all times, so it just gives out bonuses.

Q: There’s nothing that can be done about that.

Co-worker: Right, nothing to be done. If we get cash bonuses, we just buy everyone food.

Q: What do you think of ZH’s personality from interacting with her?

Co-worker: She is very outgoing and easy to get along with.

Q: Has there ever been any conflict?

Co-worker: Not yet. We all get tired at work, so we just chat and joke with each other and we never fight. We are never in the mood to fight, you know… how do I put it? We don’t really care enough to fight.

Q: What does everyone do during the 1-hour lunch break?

Co-worker: We eat and play with our phones.

Q: Do you chat with each other?

Co-worker: We do, we chat about games and things like that. We don’t have too many things to talk about. Only really narrow topics.

Q: Narrow topics such as what? And what games do you play?

Co-worker: Internet games like Connect All and other small games. Right now, we are talking about Greedy Snake and about how newcomers can fight against humans in that game.

Q: So you just chat about small things.

Co-worker: Right, just small things. We don’t feel like talking about big topics.

Q: Do the employees being cared for interact with customers? What if customers complain about the food?

Co-worker: We will handle those complaints because they are quality issues and have nothing to do with the employees being cared for.

Interview with ZH’s Co-Worker (II)

Interviewee: Manager of the restaurant

Interviewers: Chenyi Tang and Zhuojun Zhang

Writer: Chenyi Tang

Interview date: October 28, 2016

Interview place: Restaurant where ZH works

Q: How long have you known ZH?

Manager: I was transferred to the store this year, so I have known ZH for about 3 months.

Q: What’s the process for them to learn a new product?

Manager: The training manager or I will demonstrate and they will watch. Then they will take home the training materials to memorize and come back to do it themselves. We will point out if there are any problems and they will correct them.

Q: Do you have any special impression of ZH?

Manager: I have known her for 3 months and she is like W. They can take care of their own lives including going out to shop or to run errands, and they can learn about new products. Some employees being cared for immediately strike you as such because of the way they talk and act, but with others, the signs are subtle, and you won’t be able to tell until you have interacted with them for a while. ZH and W are of the latter kind. People without disabilities like us can look at things from a different angle, but they will find it difficult. Other than that, they are just like us.

Q: Is ZH good with self-discipline?

Manager: So-so, that’s all I can say. She isn’t as good at that as W, and it might be to do with her personality and family environment. Everyone is different. If I ask ZH to do something, I may have to keep reminding her, “You haven’t got this done, please get on with it.”

Q: But she still does pretty well at her job, right? Like the real technical part?

Manager: She has good skills and does a good job.

Q: Are you the only supervising manager at this store?

Manager: There are three supervising managers. I am the store manager.

Q: Do you know how the employees being cared for get along with their co-workers?

Manager: Co-workers get along the same as classmates and minor arguments are unavoidable. But ZH has a good personality, and the key is that everyone has been here for several years instead of just a month or two. We all know that they are employees being cared for, so we don’t take it too seriously with them and everyone gets along just fine. We are all happy.

Interview with Ms. ZH

Interviewee: Ms. ZH

Interviewers: Chenyi Tang and Zhuojun Zhang

Writer: Chenyi Tang

Interview date: October 28, 2016

Interview place: Restaurant where ZH works

One Out of a Hundred Thousand

Q: What did you like to play when you were young? Like blocks or some other toys?

ZH: Blocks, I liked to play with the round blocks.

If I was playing with blocks and my dad was distracting me by trying to talk to me, I would tell him, “Leave me alone! Can’t you see I am playing with blocks? Why don’t you go outside and wait till I am done.”

Q: And your dad would go out?

ZH: Yeah.

Q: Were there any kids in your neighborhood who liked to play with you or were good friends with you?

ZH: Not really. I was really naughty when I was young. I liked to play with boys I didn’t know, so no girls would play with me.

My dad would tell me, “Why would a girl play with a bunch of boys? You should be playing with girls, not boys.”

I would say, “Dad, you didn’t raise me right. It’s almost as if you were raising a boy, not a girl. You were not raising a girl at all.”

Q: You mean that your parents raised you like a boy and not like a girl at all?

ZH: Right.

Q: For example?

ZH: Like how I should act and sit. If you are wearing pants, you can sit with your legs either apart or together. A girl shouldn’t sit like that in a dress.

Q: What did you play with the boys?

ZH: We usually played flipping cards. You won if you were able to flip all the cards. If not all the cards were flipped over, and you got a second try.

Q: Is there anything memorable from when you were going to elementary school?

ZH: Yeah, in class. To tell you the truth, when I was young, the teacher would have me standing or staying after school as punishment.

Q: Which grade was that?

ZH: Hmm… maybe third grade.

Q: So the teacher kept you after school and your parents had to come to pick you up?

ZH: Not my parents. A boy in my class hit me. Then my grandma, who was already 60, evened the score for me. She came to my school and asked my teacher to teach him a lesson.

Q: And the boy never dared to bother you again?

ZH: Yeah.

Q: So you graduated from Changning Primary Vocational School?

ZH: Right, Changning Primary Vocational School. It’s not a regular college or a school for people without disabilities. It teaches cooking including Western style dishes and horticulture like flowers and plants. The employee being cared for you just interviewed graduated from that school, too. It’s difficult for people like us to get a job, because they are looking for well-educated people with college or doctoral degrees. Regular workplaces would not have hired any of us.

Q: Did you know the other employees being cared for back then?

ZH: I didn’t know any of them when I first joined. Then I got to know them.

Q: And you realized you had graduated from the same school after you started talking?

ZH: Right.

Q: How old were you when you entered Changning Primary Vocational School?

ZH: My grandma told me that when I was young, I was the only kid out of one hundred thousand kids to get sick as I didn’t get enough oxygen. Every other week I would come down with a high fever, my mouth would turn purple, my eyes would look like there were bugs flying in there, and the fever would linger around at least 40 degrees. My grandma would put cotton in my butt and my fever would go down.

When I got to fourth grade… oh, it was fifth grade, because I had to repeat fourth grade. The teacher at the school said that I wasn’t doing well with my studies, so I was given a graduation certificate before being sent to Changning Primary Vocational School. The Chinese and math that were taught at that school were first to second-grade level.

Q: You felt that the curriculum was too simple?

ZH: Yes.

Q: Were you ever class president at that school?

ZH: At that school… I was team leader in first grade. If someone didn’t do homework well, the teacher would tell me and I would return the homework to that kid.

Q: You learnt cooking at that school, right? Was there any dish that you cooked best or liked cooking most?

ZH: A lot. Braised pork belly and so many others.

Q: Do you cook at home for your husband?

ZH: Yes, because sometimes my parents-in-law are not home. If I get off work early, like at 5 p.m., I will go buy groceries and cook and wait for my husband to come home and eat.

Q: Does your husband cook for you?

ZH: No, I will have to teach him.

Q: When you cook at home, do you use the culinary skills you have acquired before?

ZH: I did. Sometimes I would flip the food in the pan the way I was taught at the school. But the pan at home is heavier, not like the one at school that I could easily flip by twisting the handle. So I did what I was taught at school and my parents-in-law said, “This isn’t school, this is home.”

Q: Was there any class that you really liked at school? Such as PE?

ZH: My favorite was PE! (Laughing) Table tennis, basketball, jump rope, shuttlecock… I really liked PE and I hated math!

Q: Do you still do a lot of sports now?

ZH: Yes. Before I came to work here, the Sunshine Home organized Olympics activities and I won a lot of gold, silver, and bronze medals. I was first place in badminton and table tennis, second place in cycling, and third place in volleyball. (Laughing)

Q: Had you ever trained in any of those?

ZH: No. We had PE classes quite often at school, so I learnt how to do them all.

Q: Are your parents good at sports too?

ZH: No. At the apartment complex, I would play with my mom using the badminton racket my dad had bought for me.

Q: Can your mom beat you?

ZH: No. She can’t even rally with me.

Q: At the school, were there any teachers that you remember best?

ZH: I remember best my homeroom teacher, PE teacher, and math teacher. When I was young, my teachers were very strict and serious with me. Usually the PE teacher, Chinese teacher, and math teacher were the ones that were nice to me.

Q: So you liked your PE teacher best?

ZH: Right, my PE teacher.

Q: Did you like the teacher because you liked the class?

ZH: Yeah.

Q: What about the math teacher?

ZH: I wasn’t doing well at Chinese and math, but I could do everything in PE.

Q: And the teacher really liked you, right?

ZH: Right. In PE, sometimes the teacher would ask us to do sit-ups and I could do 30.

Q: Did the school organize any field trips or trips to the cinema that were memorable to you?

ZH: I don’t like watching movies.

When I was in elementary school, the teacher said we would go watch a movie the next day. Then I couldn’t fall asleep at night because I just wanted to wait for the next day. My dad said to me, “You are losing sleep over such a thing, what’s the matter with you? You are going out tomorrow—why are you not sleeping yet? Go to sleep.” Then he kicked me in the back.

Q: (Laughing). So you were traumatized.

ZH: Right.

Q: What about field trips in spring and fall?

ZH: We would go to the park in fall and a group of us would sit on the grass playing. I liked it.

I won’t watch movies. The only movies I watch are animated ones like Lion King and Little Fairy Balala. I won’t watch action movies because I fall asleep over them. I prefer going on trips in spring.

Spending My Own Money

Q: Your dad said that after you graduated, you went to the Sunshine Home for a while before coming to Papa John’s to work. Were you happier at the Sunshine Home or at the restaurant?

ZH: I felt that the Sunshine Home was a little too “low.” I didn’t want to go, but my dad forced me. He said, “What will you do at home? You have nothing to do but to hang out. If you keep hanging out just like that, you will end up like all the other girls in the neighborhood.” So he sent me to the Sunshine Home. But people in the Sunshine Home do not have high IQs and are of various kinds. I said I didn’t want to go but wanted to find a job instead. People like me cannot afford to wait around for a job, because not many places will hire us, so I needed to actively look for a job. My dad said, “Why don’t you go to the Sunshine Home? The teachers there will help you and give you lessons, get some common sense into you.”

Q: So you went to the Sunshine Home?

ZH: Right.

Q: For how long?

ZH: Four years, I think. I didn’t do anything there except for playing, sleeping, and eating. I had hoped that the teachers there would help me find a job, because that’s what’s supposed to happen. I stayed there for a long while, like 1 or 2 months, and no one helped me find a job.

Then a teacher from the vocational school, Ms. Fan, helped me find a job. She asked me, “Do you want to find a job, ZH?” I said, “I do! You asked the right person. I want to find a job and not spend my time like this at the Sunshine Home.” Then the teacher said, “Sure, I will help you find a job. Bring your disability certificate and ID card and I will take you to job interviews.”

The teacher took five or six from each class, including me, to interview with Papa John’s. Papa John’s headquarters are close to Changshou Road, so she took me there. After the interview, I went for an apprenticeship at the restaurant across from the company. I watched how pizza was made and immediately learned how to do it. Then as a test, I was given some dough to knead and toss on my own. They were happy with the result and hired me.

Q: Are you happy with your job now?

ZH: Sometimes I am, sometimes I’m not.

Q: But happier than at the Sunshine Home?

ZH: Much happier.

Q: You have a sense of achievement, don’t you?

ZH: I do. If I had stayed at the Sunshine Home every day without a job or income, I would have had to ask my dad for money which would have been a bore. I prefer to have a job and my own income, and I feel better spending the money I make myself.

Q: How long have you worked at Papa John’s?

ZH: ……(Thinking) Five years.

Q: Have you ever been transferred in between?

ZH: Several years ago, I was transferred to Raffles City near People’s Square. But rent in that area is high, so we moved here.

Q: Is commuting here more convenient than to People’s Square?

ZH: It’s very convenient for me, but a little far for others.

Q: Do you live close? How do you come to work?

ZH: Not too bad. I take Subway Line 2.

Q: Does it get crowded during commuting hours?

ZH: Yes, very crowded sometimes. Other passengers would push you and not even say sorry if they bump into you. I don’t really mind since they don’t do it on purpose.

Q: Does work start at 10 a.m. every day?

ZH: It depends. Sometimes morning shift is from 8:30 a.m. to 7 p.m., sometimes afternoon shift is from 11 a.m. to 8 p.m., and evening shift is from 5 to 10 p.m.

Q: Ten p.m. is pretty late.

ZH: Because we close at 10 p.m., and we still need to stay afterwards to prepare and clean up.

Q: Your manager just said that you make appetizers and pizza dough. In your opinion, what’s the best way to do your job well?

ZH: You need experience. You watch how something is done, then you learn how to do it. That’s it.

Q: How did you feel when you first started learning?

ZH: It was a little difficult, but it gets very easy after you have been doing it long enough.

Q: I heard that you were helping the manager write something. Can I ask what you were writing?

ZH: Something to do with dough and appetizers. We are in October now. After I finished writing about October, I moved on to November.

Q: So you were tallying the amount that was sold, right?

ZH: Right.

Q: Have you always been doing this?

ZH: Yes, I have. The manager gets overwhelmed so I would give him a hand. I help him if the store isn’t too busy. Once the store gets busy, he is on his own.

Q: Do you think people look down on you for not having done well at school?

ZH: If you didn’t do well at school when you were young, people look down on you after you have grown up. W and I are both full-time employees being cared for. For some people, employees being cared for are the lowest level.

Q: So you feel that you are the lowest level at the restaurant?

ZH: Yeah, the lowest level.

Q: We just interviewed your team leader who said that you are treated the same as any other employee.

ZH: As far as the manager is concerned, we are like everyone else. But for other employees and even the cleaning ladies, we are the lowest level. They constantly refer to us as “special,” which really bothers me. Why can’t they just treat us as people without disabilities instead of employees being cared for? I don’t like to be seen as different. (Shaking her head)

Q: That’s true, that’s not good. The manager just said that he doesn’t have different requirements for you than for the other employees. You get the same compliments when you do a good job and you get criticized for not doing a good job.

ZH: The manager I had before liked to pick on us. The manager here treats us as people without disabilities and really likes me.

Q: After you got transferred to this store, you found that the manager is nice here. Did the manager of the previous store have some issues?

ZH: He was a little cruel and always got mad.

Q: Was the previous manager mean to just you or to everyone?

ZH: It was only when he got stressed at work that he would be mean. He wasn’t like that under normal circumstances.

Q: How do you usually spend the money you make?

ZH: I don’t give my dad any money now. I am worried that he would use all my money.

My dad goes out once a week. He has a problem with his legs, so I don’t like him to go out. Especially on rainy days when it gets slippery, I don’t allow him to go out because I don’t want him to slip and fall. He needs to socialize sometimes like eating out and playing mahjong, and I don’t like it. I would tell him, “Dad, you should be staying home and helping mom around the house. Don’t always go out. For you, it’s no big deal, but I have a problem with you always going out.” He won’t listen to me at all. If he wants to go out, I can’t really hold him back, so all I can do is to say, “Come back early.”

Q: So you would spend it on things you want?

ZH: On cosmetics. I had some black spots on my face, which are gone now. I normally buy hand lotion and moisturizer for my face.

Q: I see that you have makeup on today. Did you learn how to do it yourself?

ZH: Yeah, I applied the makeup myself.

Q: You did a great job. How did you learn how to do it?

ZH: I learnt by watching other people do it.

Q: Did you learn online or from other people?

ZH: No, no, I applied the makeup myself.

Q: Besides cosmetics, do you also buy clothes?

ZH: I usually buy clothes on Qipu Road. One time I was looking at some clothes and the vendor asked for 39 yuan. I said, “Can I have it for 30 yuan? If not, I am leaving.” She said, “Sure sure sure. Just pay me 30, I don’t want that extra 9. You are a sharp one. Usually no one bargains with me.” That’s how I bargain, by threatening to leave. She kept saying that I am not easy to deal with.

Q: So you mainly spend on cosmetics and clothes, do you?

ZH: I do.

Q: Do you have any interests?

ZH: I am in my twenties. When I was a teenager, I liked to watch people do cross-stitch embroidery such as embroidery of cartoon characters and of pillowcases. I liked to do all of those.

Q: Do you still do it now?

ZH: I do.

Q: And it is cross-stitch?

ZH: Right.

Q: Have you ever spent a long time making something that you really liked?

ZH: I have, small things to hold transportation cards and bankcards.

Being a Wife and a Mom

Q: How did you meet your husband?

ZH: My classmate introduced us.

Q: Classmate from where?

ZH: A male classmate from Changning Primary Vocational School.

If he asked me now, “Do you want to date?” I would have said no because dating isn’t fun when two people fight. A couple of days ago I fought with my husband and we got physical, and he hurt me. My back is still hurting from where he hit me, so I am walking with a limp.

But back then when that classmate asked me, “Do you want to date?” I said “Yes.” He asked, “What kind of man do you want? Someone who is nice to your family?” I said, “I don’t have other requirements except that he has to be nice to his parents.” Being nice to parents is the most important for me. But he should be loyal too and not have affairs. If he has an affair, he might end up deserting his family and girls hate that most. So my expectation is simple: just being nice to his parents.

Q: Being nice to his parents is nice for the parents, but having affairs is not nice for you, so he shouldn’t have affairs, right? Not having affairs and being nice to his parents are two different things, aren’t they?

ZH: Right, they are two different things.

Q: So which one is more important?

ZH: Being nice to his parents. He should be nice to his wife and to his parents too.

Q: What do you like about your husband?

ZH: He isn’t calculating. But that’s not the case anymore.

So how did we end up fighting yesterday? He was paid two nights ago, but I won’t get paid till the fifth. So I asked him for 200 yuan pocket money. He said he didn’t have the money. I said, “If you don’t give me the money, you will do your own laundry and buy whatever you need to eat or use. I won’t take care of it for you anymore. And you take care of the baby too. We take care of our own business and don’t ever ask me to do anything for you anymore.” That’s what I told him. And we ended up fighting because he badmouthed my family and I got mad. I told him, “Let’s keep it between the two of us—don’t bring my family into it. I hate it when he does that.”

I wish I hadn’t got married or even dated. If I were by myself, no one would tell me what to eat, to wear, or to use; no one would bother me.

Q: How long did you date?

ZH: Two years.

Q: You got married after only 1 year of dating?

ZH: Because I got pregnant before we got married and it’s a boy.

Q: You get to learn the baby’s gender before birth now?

ZH: No, but I knew deep down. Girls have their period every month but I missed it. There are those who feel sick and lethargic during their period. I got anxious when I missed it and I checked the calendar to find out whether I was (pregnant). I lied to my dad saying I had tummy ache and went to the doctor myself. I was told that I must be pregnant.

Q: How did you know for sure it was a boy?

ZH: Because I looked at my belly button. It’s a boy if the belly button sticks out and a girl if it goes in.

Q: Did you end up having the baby?

ZH: I had an abortion the first time because I was on medication and IV treatment and didn’t want the baby. I had the baby the second time I got pregnant and it’s pretty healthy.

Q: Did your dad have any worries when you had the baby? Did he say anything at all?

ZH: He did talk to me about it. He said, “Why did you get yourself knocked up without me knowing about it? What are you going to do about the pregnancy now? You went on medication for a week and IV treatment, too, and hid it from me. You got pregnant but told me it was tummy ache. You are pregnant and not yet married, so what do we do now?” So I had the abortion.

Q: Was it your dad who asked you to have the abortion?

ZH: Yeah. I was reluctant to do it.

Q: Mainly because you were on medication and IV treatment?

ZH: Exactly. I went to the hospital that day and the doctor asked me why I wanted to get rid of the baby. I didn’t know what to say except to tell him that I had been on medication and IV treatment and was worried about the baby being affected and being born with an intellectual disability or some deformation. So he told me to have the abortion.

Q: It wasn’t the doctor who told you to do it, it was your dad?

ZH: Right.

Q: Your worry was legitimate. Your dad said that you only had the baby recently. How is the baby?

ZH: She is pretty healthy and a little over 6 months now. If you don’t give her the bottle, she will fuss and kick. When she was in my tummy, she was like that already.

Q: Do you get up at night to feed her now?

ZH: I do. I’ll get up at 2 a.m. to feed her some milk and water, then rock her a little before going back to sleep myself.

Q: It must be very tiring when you do this every day.

ZH: I don’t really mind because it makes me happy. Every parent goes through this. My dad said to me, “Now that you are a mom yourself, you can understand how your mom felt when she was bringing you up.”

Q: So do you feel both tired and happy?

ZH: I feel that it’s a lot of work having a baby. For example, you have to take her for vaccinations each month, otherwise she might get infected with something when you take her out. Kids nowadays have a lot of infectious diseases.

Q: Does your husband know how to take care of the baby?

ZH: No, he knows nothing. On my days off, I will take care of the baby. When I go to work, my mother-in-law takes care of her.

My husband and I don’t make a lot of money, just over 5,000 yuan a month between the two of us. Buying formula and diapers for the baby costs several hundred yuan a month. Our pay is really too low and not enough to afford a baby. Grown-ups can skip on certain things but you want to make sure that the baby is healthy. People like us didn’t do well at school, and once we go to work, we are looked down upon and bullied.

Q: So your husband doesn’t take care of the baby for you or cook?

ZH: When he has time off and is in a good mood, he will take care of the baby for me. When he is having a bad day, he will just say, “Forget about it, I am not doing it.” It’s like that.

Important People

Q: We talked to your dad last time and felt that he is quite somebody. He was even on the radio. What do you think of him?

ZH: None of my dad’s siblings have any disabilities, but he has problems with his arm and leg. What I am happiest about is that he won many awards. I should have learnt from him, but I have not made him proud. He brought me up telling me to study harder, but I just couldn’t. I just wanted to play.

Q: What did you want to play?

ZH: I wanted to watch TV, play games and hang out at Internet bars. I didn’t want anything else.

Q: Did your dad get mad at you if you couldn’t focus on studies and just wanted to play all the time?

ZH: He did. He said, “If you don’t study harder, you will end up like those boys on the block when you grow up.”

Q: What were the boys on the block like?

ZH: They would throw cigarettes around and their hands would be like this. (Mimicking throwing a cigarette onto the roadside.)

Q: So your dad was pretty strict?

ZH: Yeah. He spoiled me sometimes and was very strict other times.

Q: I remember your dad saying that he would check your homework and that you would get to go to bed if you did well and have to redo everything the next morning if you didn’t do well.

ZH: Yeah, that’s what happened.

Q: How are you getting along with your mom?

ZH: I am very nice to my mom, because she was born with some intellectual disability. My grandmother took medication and had my mom, which was why my mom was born that way.

Q: How do you interact with your mom?

ZH: I get along very well with my mom and communicate with her very well. My mom talks with some difficulty, not like when you talk to me and every sentence you say is very coherent. I’ll talk to my mom, and have trouble understanding what she is saying, and she won’t understand what I say.

Q: So do you communicate with your dad more?

ZH: Yeah.

Q: Did your parents take you out on the weekends when you were young?

ZH: No. If I was in the mood, I would beg my dad to take me out and he would say, “Don’t bother me. Go ask your mom. Do you really just want to get some money from me?” And I would say, “No, that’s not what I want.” If we were to go out, I would want both parents to go out with me. If my mom and I went somewhere without my dad and I saw other families of three out and about, I would feel very sad.

Q: Did you ever go anywhere with both of them?

ZH: I did.

Q: Where did you go?

ZH: We went to Nanjing Road, the Bund, then… then… Suzhou and Hangzhou. My dad invited his old classmate’s family and we went with the three of them.

Q: So the two families went together?

ZH: Right.

Q: Was that when you were young?

ZH: When I was 16… 15 or 16.

Q: Do you travel by yourself now? Or with your husband or friends?

ZH: I did. That was in May after the baby was born. I went with my husband to Beijing. We went to the Imperial Palace where the emperors used to live, then we went to the Great Wall. I couldn’t climb very high on the Great Wall. You have to go up a slope with handrails and I said I couldn’t do it because my feet were shaking already, and I was afraid to go up. My husband said, “Fine, just go up in the cable car.”

Q: That sounds fun. You wanted to go to Beijing because you saw the Imperial Palace and the Great Wall on TV, right?

ZH: My husband had wanted to go to Beijing, and me too. I had never been when I was young. My parents went by themselves. Once I grew up, I had to make the trip myself.

Q: Your dad mentioned that you have a best friend called C, is that true?

ZH: Yes, because she was good at everything including math and Chinese.

Q: How did you meet her?

ZH: I met her when I entered Changning Primary Vocational School.

Q: Did she help you with schoolwork back then?

ZH: Normally she only helped me with math, not with Chinese.

Q: Are you still in contact now?

ZH: Yeah, we are.

Her grandma passed away several days ago, and she is in a sad mood. Her dad is in his sixties and he thinks everything his daughter does every day is wrong and has never been right. She can’t really tell her dad what she thinks, so she tells me over the phone. And I would tell her, “Once I get paid and have money, you can come and eat at my store and it will be my treat. If you have anything to tell me, we can just sit down and talk.” She wants someone to talk to but there’s no one around. She wants to talk to her dad and he just ignores her. And both her grandparents passed away, so she can only come to me and not to anyone else.

Q: Where does C work now?

ZH: At a KFC in Pudong.

Q: Does she do pretty much the same thing as you? Like making food?

ZH: Right.

Q: Do you go out with her sometimes?

ZH: She seldom goes out. When her grandparents were still around, I would buy some fruit and other things that elderly people eat and bring them to them when I visited.

Q: So you basically went to your friend’s place to meet her.

ZH: Right.

Observation of ZH at Work

Observation date: 12:30–19:30, October 28, 2016

Observation place: Restaurant where ZH works

Observer and writer: Chenyi Tang

Time	What ZH did	Remarks
12:30	One-hour lunch break	Went out for lunch, chatted with co-workers, read on the cell phone, looking relaxed
13:30	Went to the room behind the kitchen to help the manager with reports on the amount of food already sold	According to ZH (during the interview with her), she has always been the one helping the manager with this work. The observer wasn’t allowed access to the room behind the kitchen, so no observation was possible
15:00	Came out of the room for the interview
16:00	Went to the kitchen, put on an apron, and got ready to make food
16:10	Walked around in the kitchen area to get ready since there were not many customers yet
16:20	Walked around, cleaning and organizing things
16:30	Went to the freezer in the kitchen to fetch things
16:40	Reappeared in the kitchen area and started making appetizers next to the oven
16:50	Made desserts
16:55	Made desserts
17:00	Made appetizers including chicken wings and potato chips
17:05	Made appetizers including chicken wings and potato chips
17:15	A large takeout order came in and the delivery person wanted it fast. The entire kitchen, including ZH, got busy preparing the order
17:25	Got busy next to the oven, took the baked appetizers out of the oven, and put them in the takeout boxes
17:35	Prepared appetizers and desserts
17:45	Prepared appetizers and desserts
17:55	Prepared appetizers and desserts
18:05	Cleaned up in the kitchen after the large order was completed
18:15	Continued to make desserts and appetizers as more customers came in for dinner
18:25	Made appetizers and desserts
18:35	Went to the window, placed food on plates according to the orders and delivered the plates through the window
18:45	Placed food on plates at the window and made milk tea
18:55	Consulted a manager on work and continued to deliver food through the window
19:05	Left the window to fetch things from the freezer
19:15	Went to the pizza dough station and started making pizza dough
19:18	Made pizza dough
19:22	Took pizza dough from the oven
19:26	Made pizza dough
19:30	Made pizza dough

Translated by Cissy Zhao

Edited by Andy Boreham and Zijian Chen