Abstract
L, male, born in 1982. The only child in his family. Level III intellectual disability. Studied in a regular elementary school and a regular middle school. Enrolled in a subdistrict Sunshine Home in Shanghai in 2005, among the first batch of students there.
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Interview with Mr. L’s Parents
L, male, born in 1982. The only child in his family. Level III intellectual disability. Studied in a regular elementary school and a regular middle school.Footnote 1 Enrolled in a subdistrict Sunshine Home in Shanghai in 2005, among the first batch of students there.
Interviewees: L’s parents
Interviewer and writer: Yameng Xia
Interview dates: October 28, 2016 and December 17, 2016
Interview place: L’s home
A Bad Omen
Q: When did you get married?
L’s father: In 1978. I was 35 when I married her.
L’s mother: We got married late.
Q: Why? Because you were the sent-down youth?
L’s mother: No. He did not marry me until he was allocated housing by the Housing Management Bureau. Nor was I pregnant during the first few years after marriage due to infertility. Later, we went to the doctor and gave birth to L.
L’s father: Miss Xia, our parents used to live in a 16 m2 flat and had four kids, of whom I am the eldest. There was no extra place for me to get married. At that time, no housing was available to be bought or rented in the Chinese market.
L’s mother: Both of us are intellectuals and a little bit stubborn. We were advised to ask my husband’s family to make room for us as a married couple. I turned down the offer. My husband has three siblings. We could not kick his family out for our benefit. I didn’t want to be gossiped about and judged.
L’s father: It is easier said than done. We could have asked my family to make room for us. What shall I do after I have a child? We agreed to get married after being allocated housing, otherwise we would not do it at all.
L’s mother: We got married instantly after my husband was allocated housing.
Q: You gave birth to L at 38, right?
L’s mother: That is correct. Some sufferings are predestined. On January 1, 1982, I woke up because of a stomachache at four or five o’clock in the morning. I got up and saw blood on the bed sheet. I knew that I had to go to hospital immediately. It was too early to take a taxi. As a result, my husband and I went to the hospital on foot. China witnessed a baby boom at that time. I was asked (by the doctor) when the due date was. I said that it wasn’t time yet. The doctor wondered why I was at the hospital. I told him it was because of the blood. I was then hospitalized for further examinations. The hospital was crowded. January 1 is a public holiday in China.
As a result, only a small number of doctors and nurses were on duty on that day. I had to wait for my turn on January 2. I was arranged to rest on the tenth bed in the ward. A visitor came in and wanted to visit the patient on the tenth bed. However, I did not know him. Neither did he know me. He explained that he intended to visit another patient. Next, he added that the patient’s baby died in the womb. I was told later that the previous patient hospitalized on the tenth bed was the one whose baby died in the womb. On hearing that, I had a bad premonition and rushed to the doctor. I claimed that I, at an advanced maternal age, was too exhausted to give a natural birth and demanded a cesarean section as soon as possible. Medical staff immediately called surgeons in the operating room to prep for my operation after the on-going one was completed. I was then sent there by nurses. In fact, L was already suffering from a lack of oxygen at that time.
Later on, we learned that the attending doctor might have already known that L would be intellectually disabled at his birth. We did not know the truth. The previous patient hospitalized on the tenth bed was the one whose baby died in the womb. Fearing that the same thing would happen to me, I stayed awake during the cesarean section and only relaxed after hearing the baby crying. It never would have occurred to me that he would be intellectually disabled.
Two nurses attending the ward were my husband’s and my students respectively. They visited me after the cesarean section. When I was about to be discharged, they came again with the attending doctor. I noticed that something was wrong. He said that it took longer to recover from the cesarean section than from natural delivery. I, after the cesarean section, should take care of myself and hold up. I thought I felt well. Later on, everything started to make sense. The doctor must have already known the truth. That was the reason why one of our students from the hospital was sent to pay us a visit after I left the hospital. I had thought that the doctor was just thoughtful. In fact, the baby would be diagnosed and evaluated after birth. There was no prenatal testing in China in the past. Currently, technologies such as B-mode ultrasound are applied for pregnancy diagnosis and measurement.
L’s father: I took care of her during her postpartum confinement. She stayed in bed with the baby by her side. I had to give classes during the day. I went out in the morning, returned home at noon, left for work again in the afternoon and was home in the evening. If anything occurred when I was absent, she had to put up with it and wait for me to solve it. Fortunately, the winter vacation was coming up.
Busy Testing L’s IQ in Different Hospitals
Q: Did anyone babysit L when he was little?
L’s mother: He had a babysitter before he went to kindergarten.
L’s father: L had a babysitter after my wife’s maternity leave ended and was sent to the nursery when he was 20 months old.
L’s mother: We had to work. Our parents were too old to take care of L. Consequently, we hired a babysitter to look after L.
Q: The babysitter would babysit L at her home, right?
L’s father: Exactly. For example, we would take L to the babysitter’s when we were about to leave for work in the morning. She would look after him for the whole day. We were off duty around four o’clock. I had no desire to spend an extra minute in the school. I hoped to bring L home as early as possible. It was best when I could both work and look after him at the same time, otherwise I just took care of him and waited for his mother to return home and make dinner. We should take care of L as much as we can and let the babysitter rest. We weren’t too demanding even if we did pay for the service.
Q: Was L looked after at home at night?
L’s father: Sure. He was brought home at around four or five o’clock in the evening.
Q: When was L taken to the babysitter’s in the morning?
L’s father: Before half past seven.
Q: Did you supervise students at the morning self-study session?
L’s mother: Yes. I had been the class director before I retired.
Q: When did you find out that L had an intellectual disability?
L’s father: L could not speak when he was three. The doctor said that his tongue functioned well and L would be able to speak in due time. We taught him to speak during the summer vacation when he was about three and half or four years old. For example, when looking at a picture of the sun, we would teach him to say “sun.” Kids at his age are taught to read the characters of the sun while pronouncing the word.
After he enrolled in kindergarten, the teacher commented that L always reacted slower than other kids did. Or at least, he could not learn how to use scissors or tie his shoes. We thought that it took time for L to learn these things. He would be able to accomplish them in the future, right? He trims his nails independently now.
Q: Kids are little in kindergarten. It is normal if they cannot learn these things. Is that correct?
L’s father: That is right. However, all of his peers had learned to do these things. In comparison, L indeed reacted slower.
Q: Did it come to you to take him to be examined to confirm the case?
L’s mother: Sure. We took him to the hospital the first time when we learned that he reacted slower in kindergarten. The doctor asked how old we were. I understood what he meant. First, I was at an advanced maternal age. Second, he wondered whether we considered having another child. If we wanted to, he could certify for us. However, I didn’t dare have another child. I could not die in peace if I gave birth to another kid with ID again.
L’s father: We have been asked repeatedly why we won’t have another kid. We worry about many things. First, what if the second kid remained intellectually disabled? Second, our flat was only 12 m2. It was too small to accommodate another kid. Moreover, who would take care of the second baby? We have looked after L from the day he was born till now. Our parents were too old to give us a hand. Therefore, we did not opt to have another child. Everybody would be happy if we gave birth to a normal child who treated L well. However, it might be annoying if the second one did not like L and treated him badly.
L’s mother: I did not consider having another child when taking L to be examined. I just wanted to find out what was wrong with L. The doctor might have misunderstood me.
I read an article in a journal but forgot the title. The father graduated from Fudan University, Shanghai, China. He married the Chief Representative for KLM in China. Both of them are part of the elite. However, both of their kids have autism. From then on, the Dutch mother never returned to the Netherlands to visit her parents by herself or with her kids. Instead, she has set up an autism association in Hong Kong. After the association became famous, her parents knew the truth. When reading the article, I wondered what I would do if my second kid was also intellectually disabled. Someone may regard it as a genetic disease. However, the couple in the article are from different countries and talented. Still, their kids have autism. Everything is fated. As a result, I dared not have another kid at that time.
Q: Is it possible that L has suffered a congenital disease?
L’s mother: It might also be because of a lack of oxygen at birth. I read that it also led to the intellectual disability of Kennedy’s daughter. His other eight kids are normal. None of our relatives is intellectually disabled.
(L’s father brought out medical reports.)
L’s father: We took L to numerous hospitals when he was in kindergarten and elementary school.
Here is the first medical report, which says “L, an elementary school student; issue: whether he can study properly at the school.” Symptoms: “Currently in Grade One; stays down; hyperactive and has difficulties concentrating in class; slow of understanding; gives irrelevant answers frequently; likes playing with a bike and seeing sceneries along the road; no history of major diseases.” Diagnosis: “conscious and hyperactive; fails to give direct responses; able to add and subtract numbers less than 10; poor answers for commonsense questions.” Conclusion: “Intellectual disability.”
I wanted to tear it up. It was a medical report from Ruijin Hospital. We told the doctor that L was a poor student. Here is the record: “The mother gave birth to the patient via cesarean section at 38; the patient could not speak until three.” L started speaking late. “IQ test score: 39; currently in Grade Three in elementary school; repeating 2 years in each grade.” This part is hard to read. “Able to complete simple calculations but cannot answer easy commonsense questions.” Here is the doctor’s conclusion: “Dementia.”
This is the medical report from Shanghai General Hospital on September 8, 1996: “Lack of oxygen; born via cesarean section; the intellectual level below the normal level.” The doctor’s conclusion: “Self-conscious with well-developed limbs.”
Q: Did L receive any medical treatment?
L’s father: Negative.
L’s mother: It was too late. There was nothing that could cure him.
Q: How did you feel being told by teachers from the kindergarten that L might be intellectually disabled?
L’s father: We were in pain. My wife gave birth to L at 38. We had been thrilled to have him at that age. However, nothing has gone well along the way. How did we feel? Well, we had to accept the fact.
L’s mother: L has been born. We can only accept fate.
Q: It never occurred to you to abandon him, right?
L’s father: Absolutely not. We give L all our love.
L’s mother: L is the top priority in the family. For example, we are invited to eat Chinese mitten crabs. If both of us go, we may have to leave before L goes to school and wouldn’t be able to return home after school is over. In that case, my husband will attend the banquet alone and I will stay at home.
L’s father: We will not go out if we cannot make appropriate arrangements for L.
Q: You will not participate in the activity?
L’s father: We may not participate in the activity at all or only partly.
L’s mother: An acquaintance told me that the kid is lucky to be born in our family. We treat him as a normal child. He is our dear boy even if he is with ID. We are the ones to blame.
L’s father: We will never ever abandon him. He is innocent. We are the ones to blame. He is always carefree and happy.
Conquering All Obstacles for Education in Regular School
Q: Where did L receive elementary school education?
L’s father: Back then, public elementary schools interviewed and enrolled eligible children. L was rejected before being interviewed by the nearby elementary school in the district, which had already learned about the truth from L’s kindergarten.
Q: L was rejected before any interview?
L’s father: That’s right.
L’s mother: His teacher in the kindergarten said that it might be difficult for L to be admitted into the elementary school. The public elementary school had not planned to enroll him at the very beginning. They hoped that we might send L to a school that has been especially established for children with ID.
Q: You mean a special school?
L’s mother: Yes. I had no plan to send L there. I visited the special school and noticed that kids there seemed to demonstrate problems in movement coordination. L has outperformed them with respect to that at least. He would be slower in all aspects if he was sent there. I pleaded with leaders in the education system in every way I could. At last, L was admitted into the public elementary school.
L’s father: We sought help from the education bureau, which consisted of the middle school and the elementary school education sections, of which the head had been my colleague. He knew about the situation in my family and approved my request. As a result, with the greatest reluctance, the elementary school enrolled my son.
L’s mother: L performed poorly at school. He needed 2 years to finish Grade One and two more to finish Grade Two. During that time, the school always tried to persuade us to transfer L to the special school. I insisted on having him educated in the regular school. I would rather have him educated and looked down upon there. He would be surrounded by normal people at least.
Q: What were the reasons for L repeating a year in Grade One? Did his teacher require it?
L’s father: No, it was because L could not pass the exam.
Q: L went up to Grade Two after passing the exam in the second year. Is that what you meant?
L’s father: In fact, L performed better in the second year. However, he failed to pass the exam again. Nonetheless, the teacher did not want to press him further and let him move up to the next grade.
L’s mother: Later on, we communicated with leaders in the school to leave out L’s performance from assessing the teachers in order to minimize the impact on his teachers.
L’s father: You may be able to understand it. On one hand, the teachers’ burden will be relieved slightly if the student’s performance is not calculated into their assessment. On the other hand, teachers must consider the impact on the majority. They may also feel stressed when parents of other students doubt why a child with ID is assigned in their class. We are teachers and know clearly that teachers want students to perform well.
L’s mother: I want my kid to be assigned to a class with a friendly atmosphere in which he can keep observing and listening.
Q: None of the teachers in the elementary school was inclined to have L educated in his/her class. Is that what you meant?
L’s father: That is correct.
L’s mother: It is understandable. All teachers hope to teach normal kids.
Q: How did L get along with his classmates?
L’s father: No one was willing to be his desk mate for sure. All students wished to sit next to well-performing students.
L’s mother: L might be slightly naughty in class. What was more serious was he could not pass the exam. We are also parents. We could not blame his classmates. It was utterly normal and understandable that he was looked down upon in his class. It was already good enough that no one called him names. The situation was worse among the disabled in rural areas in China. Nowadays, the society is more inclusive to the disabled along with social progress.
Q: Would you teach him when he had trouble with lessons in Grade One?
L’s father: Definitely. We taught him repeatedly.
L’s mother: L would be criticized by his teacher if he could not complete his homework. After all, he was different from his classmates intellectually.
Q: Both of you teach math. How did you tutor him after school?
L’s mother: L’s performance seemed to be barely satisfactory on math. He could do basic arithmetic calculations.
L’s father: He performed poorly on word problems, which should be analyzed first.
Q: He could solve mathematical problems in mathematical notations such as dividing 6 by 12, couldn’t he?
L’s father: Exactly. However, he was at a loss with respect to word problems such as dividing ten chickens into three groups.
Q: Did you mean that he could not solve these problems even after being tutored at home?
L’s mother: People with ID understand things only to a limited extent. They may be able to have a smattering of knowledge even if they can be taught.
Q: L attended classes such as Chinese and math as other students did in elementary school, didn’t he?
L’s mother: He just sat in the classroom even if he could not understand what the teachers said. After all, he was enrolled into a regular school instead of a special one.
L’s father: We merely looked for a place that dmitted him so that we could work properly.
Four Years of Learning in Mother’s Friendly School
L’s mother: We moved later on. On hearing that, the teacher from L’s original elementary school urged us to transfer L to the new school nearby. The teacher in the new school could tell at once L’s condition and was unaware which grade he should enter at that age. As a result, L could not be enrolled into the new school.
To solve the issue, I turned to my boss, who I thought handled it properly. He admitted L to a class in my school without registration. Nor was his performance considered in the teacher’s assessment. Now that L entered a class and behaved himself, I could focus on being the class director.
Things got much better in comparison with those days when L had been all by himself in the original elementary school. His new classmates, knowing that he was a teacher’s kid, treated him reservedly anyhow. They would not bully him at least. Rarely did they look down upon him. Kids had called him names in the original school.
His teachers also knew that he was my son and took particular care of him. It was nice that my colleagues would talk to him. He might be in a daze all day long if no one spoke to him. He stayed in my office at lunch time, during which my colleagues there would talk to him. He could at least get more information and keep a more open mind than students do on average, students in special schools at least.
Moreover, various activities such as outings have been held in my school. Being the class director, I might take him to join our class activities from time to time. I wanted my students to know about L’s condition to prevent them from bullying him. Many years later, my students, whenever running into me, would ask with concern, “How does your son do, Miss Feng?” I think L is luckier than other kids with ID. He has been less looked down upon. Instead, he has often been encouraged and taken care of.
Q: It is good for him, isn’t it?
L’s mother: Certainly. Thanks to these efforts, he is relatively outgoing. Some children with ID tend to be introverted under the impact of the environment. They may be looked down upon, have no companions or be laughed at whenever they open their mouth. Consequently, they dare not speak anymore and cannot speak at all eventually. My son has benefited from a friendly environment at least.
What’s more, students would visit us frequently and talk with him, contributing to an increase in his capabilities. Things changed after my retirement. L had stayed alone at home in the year before I retired. His class was a preparatory one, in which students would graduate after 4 years of study. A year later, I was also retired. In fact, being the class director, I postponed my retirement for half a year to ensure that my students could graduate and continue to high school smoothly.
L’s father: Here is how he finished school in the past 9 years. He spent 2 years in Grade One and two more in the next grade. We moved when he was in Grade Three. On hearing that, his teacher urged us to transfer L to the new school nearby. However, it was useless for his teacher to push us. After all, no other school would accept him. Just at the time when we kept looking for a new elementary school for L, my wife’s boss offered to admit L into the middle school in which she worked. Consequently, L skipped Grade Four and Grade Five and entered directly a preparatory class in the middle school. His teachers accepted him and gave him full support. That was how L spent his 4 years there. He would only participate in activities not affecting overall performance of the class. For example, he would not take the demonstration lesson. Regarding PE, his mother just mentioned that he would join in suitable sports activities and sit out other ones. Before retirement, his mother worked as the class director for four continuous years. In exchange, L could attend school.
Q: Was L in his mother’s class?
L’s father: No. L was assigned to a different class at the price that my wife should be the class director.
Q: It was demanding, right?
L’s father: There was no other way out. L might be assigned to the preparatory class. However, he did not participate in multiple activities together with his classmates.
L’s mother: At least he was able to see and expand his horizons.
Q: Was L happy at school? Did he like to go to school?
L’s mother: Let me put it this way. Later, L participated in an activity held on Guangzhong Road. He would greet his PE teacher and other teachers in my school whenever he ran into them on the road and talk about that after returning home. It was obvious that he used to get along well with these teachers at school.
L’s father: L has been polite whenever encountering teachers he knows. He has been attached to them after spending a long time in his mother’s school.
Q: How did he get along with his classmates in middle school?
L’s father: His classmates would not play with him.
L’s mother: They were afraid of him.
L’s father: He could not communicate with normal kids. To put it frankly, he just had a place to go in his mother’s school.
Q: Would they play ball games together?
L’s mother: He merely watched others playing during PE courses in most cases. It is all right for him to run or do radio calisthenics jointly with others. His teacher would not involve him in certain activities such as ball games in order to protect him.
Q: What did L learn at school? For example, how many Chinese characters can he read and write?
L’s mother: First, he could not understand courses taught in middle school at all. Regarding Chinese characters, he can only read common ones on newspapers. He can also do basic arithmetic calculations up to ten.
Q: Have you tutored him to read Chinese characters at home?
L’s mother: He has learned from several sources. First, he was taught at school. Second, we would draw his attention to the road signs and take him to exhibitions and teach him Chinese characters he could not read. He would also ask about Chinese characters he could not read when watching TV.
L’s father: In the year prior to his mother’s retirement, his classmates had graduated. As a result, he left school and stayed at home for a year. We left to work and gave him paper and a book to practice writing at home. We were unaware whether he read out the content during writing.
Q: Has he learned and mastered pinyin?
L’s father: He spent 1 year learning pinyin.
L’s mother: But he failed to master it.
Q: He has learned to read Chinese characters directly, hasn’t he?
L’s mother: Or he would read a newspaper.
Q: Did he learn other subjects such as natural sciences at elementary school?
L’s mother: The answer to that would be no. We would tell him short stories and basic principles in general.
(L’s father wrote several pinyin characters on a name card and asked L to read them out loud.)
L’s father: Come on, try to read out this one.
(L’s father wrote “cat” on the paper.)
L: The first one is cat.
(L’s father fetched a newspaper and asked L to try to read out characters there.)
L’s father: Let’s read out another one.
L: “Country.”
L’s mother: Good. Come and read out the headline on this newspaper. It came this morning and he did not read it beforehand.
L (read out the headline by dropping the words one by one): “Ensuring sufficient counselors offering personalized services to senior citizens.”
L’s father: He can read common Chinese characters. He has learned them in Grade One and Grade Two.
L’s mother: He can also read those he saw on newspapers, TV, and outside or learn to read them.
L’s father: He often confuses Chinese characters. For example, I once took him to take the subway at Zhenping Road Station. He took a glance at the road sign and mispronounced it as Tianping Road Station.
L’s mother: The Chinese character “suspicion” consists of two radicals; that is, “water” and “step.” L mispronounced it as “step.”
He plays word games at the Sunshine Home. The teacher may specify a word such as “country” or “spring.” Students take turns to list songs of which the lyrics contain the word. L can give correct answers. Moreover, he can also tell at once the singer of a song. Therefore, L, after being influenced by what he constantly sees and hears, tends to be more agile than other people with ID.
Q: He has learned these things on his own in daily life, but studied pinyin in Grade One and Grade Two. Is that correct?
L’s mother: L plays the 24 Game well.
Q: Do you mean that he was good at math?
L’s mother: No, just the 24 Game.
L’s father: I will prepare the 24 Game the next time you meet L. To tell you the truth, you may be no match for him. He is indeed a good player in the 24 Game. Middle school students and most volunteers from the Benevolent Society cannot beat him. Why is he so skilled at the 24 Game? We would travel by bus sometimes on his way to school. Sitting in the front row on the bus, I might ask him to calculate the four numbers on the license plate of the car ahead. Consequently, he is familiar with the rules.
Q: I should practice the game first.
L’s mother: Someone joked that L might inherit that from us since both of us have taught math.
(L’s father took out L’s Certificate of Study in Middle School.)
L’s father: My wife used to work in that school. The school was very nice and granted a Certificate of Study for L after L was admitted there for several years. It also gave us a Certificate of Graduation of Elementary School, which is useless because it is not stamped. We cannot have it stamped since L did not finish elementary school.
Q: You did not require him to acquire any knowledge during 4 years in middle school, did you?
L’s mother: We just wanted to find the right place for him, otherwise we could not concentrate on work. Now, either of us can stay at home and look after him.
Q: Didn’t you work in the same middle school?
L’s father: No, my wife’s middle school is better than mine.
Considerate Mother Leading the Class to Win Honorary Title of Advanced Collective
L’s mother: I did an excellent job indeed. My class was the only one in my school that won the honorary title of the advanced collective at the district level. I took over a class in 1993. These students graduated 4 years later, that is, in 1997. I was supposed to retire in February 1999. I told my boss that I didn’t want to be the class director since I would retire in a year and a half. However, he insisted on that.
The new class had performed poorly in math. I cooperated with my former partners teaching Chinese and English to improve the situation. Thanks to our efforts, the class ranked first in math and won the honorary title of the advanced collective at the district level. Consequently, I was thought of highly in the school (smiling).
Q: The school wanted to make you class director, didn’t it?
L’s father: After all, L was admitted by the school. After school, L would stay in her office while she taught students in her class. The school was over at five o’clock, but she remained working.
Q: Because she was the class director?
L’s father: She monitored the class while studying. Some parents would come to school at half past five and wonder why the school wasn’t over yet. They admired her on seeing that she remained teaching students at that time. She was full of energy while I did housework in the evening. Accordingly, her class was rated as the advanced collective at the district level and she was awarded the third prize of “the most caring” teacher in Shanghai. She further received the honorary title of the advanced teacher from her school.
L’s mother: My class performed the best in the final math test in comparison with the other six classes in the school. One of my students obtained the only quota in my school to be sent to the science class in the High School Affiliated to Fudan University.
L’s father: She also did all these things for the sake of L.
L’s mother: I was grateful. My boss was kind to admit L. I could not settle down in my job if L had no place to go. I could concentrate on my work so long as I knew that my son was admitted in the school. Moreover, I think it was better for L to stay in my middle school than in the elementary school.
L is slower in learning things. He has to be taught repeatedly to acquire certain knowledge. When teaching students, I would also think of that and treat all my students equally and patiently.
L’s father: We prefer to put more energy into teaching students who are slower in learning, instead of despising them.
L’s mother: Exactly. Some parents commented that their kids were lucky to stay down in my class. I was also inspired by gaining their recognition. My own kid is slower. Therefore, I would care more about such students in my class. They may not be born clever. However, I think things would be worse if they became self-abased and gave up on themselves after being criticized frequently by the teacher.
L’s father: Students repeating the year’s study in her class made great progress. She was also popular among temporary students.
L’s mother: Later on, my class became the largest in the grade. Temporary students and students staying down were initially required to study in my class. These students staying down shocked everyone by performing well in the final test.
L’s father: First and foremost, a teacher should not look down upon any student. Teachers with kids have a deeper understanding with respect to that.
L’s mother: I cared about my students and they respected me in turn. My husband can vouch for this. I retired at 55. When I was 70, my students organized a class reunion to celebrate the anniversary of their graduation. Thirty students made it. Students staying down in my class who had been naughty took photos with me. They are aware that they could not perform so well now without my devotion at that time.
(Looked at photos.) This is the class I am talking about. This is the photo of me winning the third prize of “the most caring” teacher in Shanghai. Here is my unit, my name, subject, and age. I won the prize at the end of 1998 and retired in 1999. The class, which had been disordered at first, was rated as the “advanced collective at the district level” in the end. The class performed the best in the final math test among seven classes in the school. Its average math scores were 6.69 points higher than the average for the district.
L’s father: Parents are relieved so long as their kids are placed properly.
L’s mother: Parents of my students were clear about my condition. They knew that I would care about and encourage their kids who might not perform well and learn slower.
Staying at Home Alone for a Year and Receiving Strangers’ Care When Strolling Around
Q: Did L graduate in 1998? How did he spend time from then on till 2005 when he went to the Sunshine Home?
L’s father: He stayed at home alone for a year. It was quite hard.
Q: When did that happen?
L’s father: He finished compulsory education and graduated in 1998. He stayed at home alone in the coming year since both of us had to work. He was not taken care of for the whole year.
Q: How did he go through that time?
L’s father: L would be locked at home to practice writing Chinese characters when we went to work in the morning. We were anxious about him wandering around.
Q: Practice writing Chinese characters?
L’s father: Whatever he would like to do. He might also watch TV. When either of us did not have a fourth class in the morning, we would return home to cook for him and return to work after he finished lunch. He would also go out and stretch his limbs in the afternoon if the weather permitted.
Q: Could he go out alone to exercise?
L’s father: Sure. We would tell him to come back around four o’clock or half past four. We also managed to return home at that time. He would stay at home on rainy days.
After all, he merely strolled outside. I used to receive a call from a woman. She used to go outside to enjoy the sunshine and often saw L wandering around. Kids at his age ought to be at school. She was afraid that L might skip school and his parents were unaware of that. They talked, and L told her my phone number. I thanked her for her concern and explained that L was with ID and had no school to attend.
Q: Didn’t you worry that he might get lost?
L’s father: Never. He knows the way home.
Q: What else did L do in 1998–1999 except writing Chinese characters, watching TV, and strolling?
L’s father: Nothing else. He was alone at home. We were quite satisfied as long as he could practice writing Chinese characters and not get into any trouble.
L’s mother: I started accompanying him after retiring in 1999. Things had been hard for him indeed during the previous year.
Witnessing the Establishment of the Sunshine Home and Enjoying Himself
L’s mother: I retired in 1999. At that time, no activity was held for children with ID. I sought help from authorities concerned, hoping that those children can be organized to be trained or tutored instead of merely idling at home. Parents would cover the costs.
L’s father: My wife really cares about L. Disabled persons were reassessed in China in 1999. We took the opportunity and got a Disability Certificate for him. After retirement, we have started to think about how my son and other people with ID can make a living after the parents are too old to take care of them. My wife took L to seek help from the district-level DPF and the street civil affairs section.
L’s mother: I tried to explain L’s situation, hoping that the district-level DPF could recommend a job for L. I could go with him and teach him if the job was beyond him. Officials there said that the federation did not do that. Moreover, China has achieved social and economic transformation, making it hard to find a proper job for people with ID.
L’s father: My wife also turned to the street civil affairs section. She asked whether the authority could organize any activity for L to participate in if it could not offer a job opportunity. Back then, no organization was set up for people with ID exclusively. Officials offered to contact the association of people with physical disabilities to see whether it would admit L in its activities. After all, it has organized formal activities. Of course, L was rejected since he was not physically disabled. Around 2003 or 2004, L participated in activities held by community disability service assistantsFootnote 2 for people with ID.
The “4050 Program”Footnote 3 was launched in Shanghai in 2004. Some females at the age of 40 and males at the age of 50 retired or were laid off in industries such as the textile industry and the instrument industry. So did eligible employees with physical disabilities engaged in simple productive labor. The policy was released to find some other means of livelihood for them. Those unemployed physically disabled people were recruited by the DPF to manage people with ID and organize and hold activities for them. They are referred to as community disability service assistants. On one hand, they can make a living. On the other hand, outdoor activities can be held for people with ID.
Q: The post of community disability service assistants is set for people with physical disabilities, right?
L’s father: Yes, the government helps reemployment of people with physical disabilities.
From then on, people with physical disabilities have started to manage people with ID and organize activities. Kids like my son participated in these activities. They did not have a fixed venue at first. A community disability service assistant might lead them to do exercises such as radio calisthenics for 1 or 2 h in public places near the community. Then would they return home.
L’s mother: At first, they did not have a special venue for activities but merely did radio calisthenics in green areas. Nonetheless, it was better than nothing.
L’s father: The first step of the Special Olympics movement was to encourage people with ID to go out. They could then participate in activities. Radio calisthenics was taught first since it is easy to learn, does not involve any equipment, and doesn’t cost much. I saw how community disability service assistants taught people with ID. It was hard indeed. Normal people might have mastered the movements long ago after repeated instruction by these assistants. However, people with ID such as my son have limited ability to understand and are slow to learn. The assistants were patient and kept teaching them until they learned these movements.
L’s mother: We also stood there and encouraged them. They could learn these movements with more practice.
L’s father: The officials in charge have gradually paid more attention to this sector and allocated a special venue for them to do exercises.
L’s mother: Then came the Sunshine Home. Finally, people with ID had a fixed indoor space for activities organized by dedicated teachers. Next, a waist drum team was set up for people with ID in Hongkou District. People with ID could participate in an increasing number of activities such as table tennis, badminton, and basketball shooting in a school’s playground during the weekends. I accompanied L to these activities at first. He refused to join them alone. Now, he won’t miss them for anything.
Q: When did the Sunshine Home come into being?
L’s father: Around 2006–2007 when the 2007 Special Olympics World Summer Games were held in Shanghai. The Sunshine Home was created by Former General Secretary Hu Jintao, meaning the home was shone over by the glorious Communist Party of China.Footnote 4 Hu also visited the Sunshine Home in Quyang Subdistrict in Shanghai. At that time, teachers in the Sunshine Home were physically disabled.
L’s mother: The project was shaped from 2004 to 2007. From then on, it has been completed and managed by dedicated personnel.
Q: Did L start to participate in these activities in 2004?
L’s mother: That is true. My son has been among the first batch of students to learn radio calisthenics initially and register in the Sunshine Home established in 2005. However, he had to be accompanied to join any activity at first, otherwise he would not go. He thought the activity would be boring if he could not learn how to play it. I also took him to join the waist drum team at the beginning. I learned to play the waist drum first and taught him myself until he could play it.
L’s father: An increasing number of activities have been held such as badminton, table tennis, and tug-of-war.
L’s mother: Community disability service assistants organized a variety of activities at first. We saw them starting from nothing to performing well in these activities. We feel from the bottom of our hearts that the government has spent a lot of effort for more than a decade to reach today’s achievements. I can tell that from the change that occurred with my own child. He could not play basketball or the waist drum in school. He has learned them from activities held by the assistants.
Q: What does L usually do at the Sunshine Home?
L’s mother: There are so many activities held here. L told us that volunteers from organizations such as the Benevolent Society would teach them to make cookies, do handwork, draw, dance, do radio calisthenics, or play games.
Q: What about cultural activities held at the Sunshine Home?
L’s mother: There is also a wide range of physical activities. For example, table tennis tables are also available at the Sunshine Home.
L’s father: A doctor was also recruited to teach them the basics of healthcare.
Q: Is the Benevolent Society a voluntary group?
L’s father: Yes. Volunteers from the Benevolent Society often hold activities at the Sunshine Home. They bring materials themselves and teach students handwork. They will take a photo for the student and his work after the job is done. Here is the handwork L completed jointly with volunteers from the Benevolent Society (fetched out an A8-paper-sized wooden handmade photo frame with small stars pasted all over the frame). L brought it back as a souvenir after completing it.
Q: Do volunteers from the Benevolent Society visit the Sunshine Home regularly? How often?
L’s father: No, the times are not fixed. The Sunshine Home organizes activities regularly. A volunteer teacher gives a dance class every week or every other week at the Sunshine Home. She also taught these students to take part in a municipal dance competition.
L’s mother: The dance music is Beautiful China. The teacher, being mother to a student at the Sunshine Home, is a great dancer and teaches students there once per week. Thanks to her great efforts, these students can make such great progress today. They also draw on Wednesday and dance on Monday and Tuesday.
L’s mother: We can contact the Sunshine Home to see when it holds activities if you plan to observe L’s performance during these activities, otherwise there’s no point in going. It is a time-consuming task.
L’s father: Numerous activities are held over the weekends.
L’s mother: L is happy no matter how much he can learn. I think students there should be taught to widen their horizons. Volunteers would also teach them to make moon cakes and other sweets. L often tells us what volunteers from the Benevolent Society plan to teach them the next day. He is happy whenever he talks about that. I asked him: “Are you willing to learn that?” He said that he was. I just hope that L can be happy every day. I have to do everything to make it happen. Don’t you agree?
Q: I agree.
L’s mother: Students are happy at the Sunshine Home. As a result, even if they are criticized when not performing well, they accept criticism and change accordingly. If they were unhappy there in the first place, they would no longer go there once they were criticized. I could not recall any student enrolling into the Sunshine Home and dropping out. When meeting new students whose parents may worry about the new environment at the Sunshine Home, I take the initiative to assure them that teachers there are nice, and it is a friendly place. My kid is happy there. Hearing that, these parents believe me and are relieved.
Q: Great.
L’s mother: Once, we were invited to a parent–teacher conference. I was astonished. My son was dancing there. I never even considered him dancing. He performed quite well as a whole. I think it is challenging for the teacher to teach students with ID. They may not move to the beat strictly. Nonetheless, they have made dramatic progress, right?
Q: Yes. They are well taken care of at the Sunshine Home.
L’s mother: That is true. I think the Sunshine Home has been developed for a long time together with retired or former teachers. Development of people with ID has attracted concerns both from the local governments and nationwide. Authorities have implemented practicable measures to make satisfactory achievements.
L’s father: L is glad to go to the Sunshine Home. For example, it rained heavily yesterday and the day before yesterday. He went there all the same.
L’s mother: His father tried to persuade him not to go.
L’s father: I told him that it rained heavily. His clothes and shoes would get wet in the rain. It would be uncomfortable to wear them. When he heard me, he sat down on a chair. After a while, he jumped to his feet and said that the rain let up and he could go to the Sunshine Home. He loves to be there.
Q: Does L go to the Sunshine Home alone?
L’s father: Yes.
Q: He returns home all by himself in the afternoon, doesn’t he?
L’s mother: That’s correct.
L’s father: Many parents frequently buy watermelons in summer and pastries on other occasions at their own expense and send these things to the Sunshine Home.
L’s mother: These kids greet me when they run into me ongoing upstairs. I also treat them as if they were my own. They can only play with each other or with their siblings. It is unrealistic for them to get along with other normal kids.
L’s father: The Sunshine Home organized an autumn outing to the Great Garden the day before yesterday. Students brought snacks and shared with each other. They brought back leftovers.
L’s mother: We bought a cake on L’s birthday and L shared it with other students. They may be in their twenties or thirties but they act like teenagers. Normal people in their thirties are not at all like them. In summer, parents living near the Sunshine Home may take watermelons there. Living far away, we cannot do that. We may send pastries instead. It is no longer necessary for us to do that. L takes pastries to the Sunshine Home himself and shares them with other students.
Q: Have you taken him out recently?
L’s father: The three of us went to a scenic area in Ningbo at the end of September. L wanted to buy local specialties for his classmates immediately, who would also do the same thing for him. One of his classmates went on a trip to South Korea and gave them key rings as a souvenir. Another one went to Shandong Province and brought them nori.
L’s mother: These students share things with each other.
L’s father: L has no idea what the local specialties are. Nonetheless, he asked us to buy these things.
L’s mother: We bought Ningbo crisp bean candies. There were 32 students in L’s class. L gave each of them a pack of candies.
L’s father: Last time, parents of kids with ID from subdistricts such as Jiaxing Subdistrict, Tilanqiao Subdistrict, and Guangzhong Subdistrict attended a meeting organized by Special Olympics East Asia and talked about the operation of Sunshine Homes. I listened and noticed that Sunshine Homes have been operated differently by the subdistricts. The Sunshine Home in our subdistrict has performed well and held numerous activities. Some Sunshine Homes serve as nurseries and barely hold any activities. The best one is the Sunshine Home in Quyang Subdistrict in Hongkou District. It was visited by former General Secretary Jintao Hu. L goes to the Sunshine Home in Jiaxing Subdistrict. L’s mother knows that the Sunshine Home in Quyang Subdistrict is better and wants to transfer L there. L refused because he is familiar with all his classmates in the current one. Moreover, it is stipulated that students who register their permanent residence in one subdistrict cannot be transferred to a Sunshine Home in other subdistricts. L, with his permanent residence registered in Jiaxing Subdistrict, cannot go to the Sunshine Home in Quyang Subdistrict.
L’s father: One flaw lies in the operation of the Sunshine Home in Jiaxing Subdistrict. It should not share a place with the Sunshine Psychiatric Garden,Footnote 5 which is applied to managing people suffering from mental illnesses. The disabled are categorized into five groups: the physically disabled, the deaf–mute, the blind, the mentally disabled, and people with ID. It would be a threat to personal safety if the mentally disabled had a seizure. Parents of students at the Sunshine Home worry about their kids’ safety. Beyond that, we approve of how the Sunshine Home is operated.
Encouraged by Parents to Join the Waist Drum Team Early
L’s mother: L is a member of the waist drum team established by the Hongkou District DPF and participates in activities held on weekends.
Q: Where are these activities held?
L’s father: At No. 22, Guangzhong Road. It is called the Hongkou District Disabled Persons’ Federation and Hongkou District Cultural and Sports Training Center for Persons with Intellectual Disabilities.
Q: When was the waist drum team established?
L’s father: Around 2004 or 2005 when the Sunshine Home was set up. Community disability service assistants organized activities for students in the Sunshine Home and taught them to play the waist drum. At first, they organized these students to do radio calisthenics in the lane near their office, which was located on Wuhua Road in Hongkou District. Meanwhile, the subdistrict office purchased some waist drums. As a result, these students began to play the waist drum and do radio calisthenics alternatively. However, playing the waist drum in the lane would disturb residents there. After receiving complaints, assistants found a new place to do that. Nearly all students doing radio calisthenics have learned to play the waist drum. Well-performed ones have been selected for the waist drum team.
Q: Assistants would mobilize students good at radio calisthenics to play the waist drum. Is that correct?
L’s mother: Right. These students have to do radio calisthenics first. Then they will play the waist drum. An original member of the waist drum team quit. The organizer thought highly of my son and persuaded him to join the team.
L’s father: My son did radio calisthenics but was unwilling to play the waist drum. At first, students were making noises rather than following beats to play. My son, being annoyed by the noises, would rather cover up his ears. The waist drum team was just established. Assistants also hoped to build a sound team. Seeing that L performed well when doing radio calisthenics, they went all out to persuade him to join.
Q: Why did L select to play the waist drum instead of participating in other activities such as square dancing?
L’s mother: Square dancing has emerged in China in recent years. At first, assistants organized students to do radio calisthenics. It is the simplest activity and can be done anywhere. Parents would bring their children to the designated place to do radio calisthenics. They might also teach their children if these children could not do it. Then the waist drum team was set up. It is also easy to hold the activity. All you need is the waist drum. The team can play in Miyun SchoolFootnote 6 on weekends, during which students there have a rest.
Q: Does Miyun School also supply waist drums?
L’s father: Definitely not. Waist drums are supplied by the Hongkou District DPF. The subdistrict office might also buy seven or eight drums at its own expense at the request of the district government, which could not afford these waist drums itself. The waist drum L uses is one purchased by the subdistrict office.
L’s mother: The waist drum team would practice in the playground of Miyun School. However, residents nearby complained about the noise. In fact, it is also noisy for students there to do radio calisthenics in the morning during weekdays. Nonetheless, it is done in 10 min. However, the team would play the waist drum for a longer time. Consequently, the team has been organized to practice in the current venue.
L’s father: For example, the lane is empty now. Residents nearby may complain if they hear discordant drumming for a whole morning. In fact, that is the reason why the waist drum team has changed venues twice.
L’s mother: Back then, people playing the waist drum might have come from several subdistricts.
L’s father: The waist drum team practices at No. 22, Guangzhong Road. In fact, residents nearby have also complained about that. However, the team has no other place to go. As a result, sound-proof equipment has been installed. You saw it on that day. You also saw three community disability service assistants, of whom two are physically disabled. Community disability service assistants tend to organize activities near the Hongkou District DPF. For example, their office is located near our community. They will hold activities near the office.
L’s mother: Other members have already played the waist drum for a while and made great progress when L joined them. Being a substitute, my son was unwilling to play at first because he could not catch up with them. I accompanied him and learned to play the waist drum myself. Then I taught him at home until he mastered it. It took about 2 months for L to catch up. I think all things are difficult before they are easy. The waist drum team also started from scratch and performs well now. Moreover, these members could not play the waist drum in the first place. They may take the waist drum home and not play it. They claimed that they could not play it. It takes time to master a skill.
L’s father: We encourage L to participate in activities. However, L may be afraid that he cannot perform well and is sometimes unwilling to go outside. In comparison, some parents might be embarrassed about their kids’ performance and reluctant to allow them to join activities. Some other parents would even worry that their kids could get lost. Consequently, these kids would rather stay at home. It was painstaking for assistants to visit these families repeatedly to mobilize these kids to participate in activities. They put forward the slogan of “Going Outside and Joining Community Activities.” These kids had been reluctant to go outside at all.
L’s mother: My husband and I are teachers and open-minded. If I were afraid of my son embarrassing me, I would not let L stay in my workplace for such a long time or rack my brains to encourage him to go outside. In my opinion, he is born to be a person with ID. I have to make him to see the world and communicate with people to fit into the society.
People will not laugh at him even if they know that he has an ID. Someone may mock him if they know nothing about him when meeting him for the first time. If they know about him, they will feel pity for him. Therefore, L was encouraged to participate in a variety of activities when he was little.
People with ID from the whole Hongkou District may join these activities. The waist drum team has been promoted as the organization affiliated to the Hongkou District DPF. It must reach people with ID from a large area to be promoted on TV. The team, which has been operated attentively for years, is a highlight among activities held for people with ID.
L’s father: My kid goes out every day. He goes to the Sunshine Home on weekdays and joins activities held by volunteers on Guangzhong Road on weekends.
L’s mother: L is happy. It is demanding for people with ID to learn to play the waist drum. The waist drum team has selected those who perform well. L is smarter in comparison with his classmates in the Sunshine Home. That is why he was selected for the waist drum team. Moreover, he is tall and was selected as the flag bearer.
L’s father: He is both the flag bearer and a member of the waist drum team.
Q: Can he also perform the dragon dance and the lion dance?
L’s mother: Sure. He learned that on Guangzhong Road.
L’s father: He can also play the flat drum now.
L’s mother (gesticulating with hands): It is barrel-shaped.
L’s father: He performs well in dancing and playing the drum.
Q: Does he like to join activities organized by the waist drum team?
L’s mother: He will go there unless the activity is cancelled.
L’s father: He may not go there if the teacher in charge tells him not to.
Q: L would never miss any practice, would he?
L’s father: Absolutely not.
L’s mother: He likes to do that.
Q: What if he feels under the weather? For example, what if he catches a cold or has a fever?
L’s father: L is physically healthy all the time.
(L’s father took out L’s waist drum.)
L’s father: Tomorrow is Saturday. L will go to Guangzhong Road with this waist drum.
L’s mother: At first, I accompanied him and urged him to go there, otherwise he would not go.
L’s father: Exactly.
Q: You spent about 2 months accompanying him and then teaching him at home, right?
L’s mother: Yes. He has been interested in playing the waist drum after he learned how to play it. No one can stop him from going there.
Q: Does he join the waist drum team on weekends all by himself?
L’s father: That’s correct. We didn’t live in Quyang Subdistrict until last September. He knew the way to Guangzhong Road from our original home. After moving here, we accompanied him to the Sunshine Home and Guangzhong Road several times. He knows the way now and can go and return all by himself.
Q: Does he also need to take a bus?
L’s mother: Yes, he does that alone.
L’s father: My wife is careful and patient and has accompanied him several times. I only accompanied him once. After a while, he knows the area better than we do.
Q: Is he good at remembering bus routes?
L’s father: He is. For example, he knows that one can go to Lu Xun Park via bus route 959.
L’s mother: After moving here, on weekends, L went to Guangzhong Road in the morning and strolled around in the district in the afternoon. He knew the area well after a while.
Q: Are activities of the waist drum team held in the morning on weekends?
L’s mother: Yes.
Q: L will return home for lunch and go out again in the afternoon. Is that what you meant?
L’s father: He likes wandering around if he is free in the afternoon.
L’s mother: That is how he gets to know the area.
L’s father: It may also be one of his habits. He was alone at home from 1998 to 1999 because we had to work. He would go outside in the afternoon. He has developed a habit of strolling around in the afternoon if he is free.
A Sports Fan Participating Frequently in Local Special Olympics Activities
Q: Has L participated in the Special Olympics Games? Which programs?
L’s father: Badminton, table tennis, and basketball (see Fig. 1).
L (left) received an award after he won a table tennis match organized by the Hongkou District Disabled Persons’ Federation
Q: Is it because L is as tall as 183 cm?
L’s mother: It is not a regular basketball game. They play horse.
L’s father: He cannot participate in all programs. Everyone is encouraged to play a part.
L’s mother: First of all, I want to clarify that L is not a professional Special Olympics athlete.Footnote 7 He participates in sports activities held by the Sunshine Home.
L’s father: Shanghai hosted the Special Olympics World Games.Footnote 8 Outstanding athletes were selected from all districts in Shanghai to compete in contests. Winners would represent Shanghai to participate in the 2007 Special Olympics World Summer Games. L failed because he did not perform well in bowling. Consequently, he has never joined major Special Olympics Games.
Q: Hasn’t L participated in any Special Olympics World Games?
L’s father: No, he has participated in neither Special Olympics World Games nor the municipal Special Olympics Games. He has joined in Special Olympics activities held at the district level or below.
Q: Has he played a part in the Hongkou District Special Olympics activities?
L’s father: Sure. He has participated in most Special Olympics activities at the subdistrict level. Sports activities are held constantly at the grassroots level.
Q: Are these activities held at least once a year?
L’s mother: That is correct.
Q: L is a sports fan, right?
L’s father: Yes, he really likes sports. He could ride my 28-inch bike when he was in elementary school.
Q: Has he developed a good balancing capability?
L’s father: When he was little, he would ride a bike by stretching one of his legs across the triangle frame of the bike. However, for safety, we didn’t let him ride the bike after he grew up. He knew nothing about traffic rules. We used to live in a newly established community, in which yards were interconnected. L could ride a bike there. My wife cooked while I kept an eye on him. I take credit for his interest in sports.
Q: Did you take him to do sports?
L’s father: My wife basically did all the housework and I took care of L. I like sports. I used to be the sports secretary in my class in high school and college. Consequently, I would take L to do some sports. For example, I might put two chairs together and play table tennis with L at home. Or we would play badminton in the yard. Sometimes we might do exercises in spare room in the lane.
Q: How old was L?
L’s father: About 6 or 7 years old. It was easy for me to borrow sports apparatus from the school’s gymnasium and play table tennis, badminton, football, or basketball with L to cultivate his interest in sports. We would play sports he was capable of.
Mother’s Concern Over Proper Manual Labor
Q: In my last interview at the Sunshine Home, I heard that L got his clothes dirty when helping clean the bathroom. Is that correct?
L’s father: Yes, Ms. Ni brought it up. It was handled by my wife.
L’s mother: That is correct. Well (giggling with embarrassment), I can explain. L wears a cotton-padded jacket when he goes to the Sunshine Home in winter. He helps deliver food there. As a result, it is common to see grease stains on his clothes. Once, I saw that he got his jacket dirty again. He had poop stains on his clothes. It had never happened before. I asked him and learned that L was told to clean up the bathroom after a student had defecated.
L’s father: The student was mentally disabled.
Q: Did the student ask L to do that?
L’s father: One of the three teachers at the Sunshine Home takes care of the mentally disabled. It was him that told L to do that.
L’s mother: The student might have pooped outside the toilet. L was told to clean that up and got his clothes dirty. L could not tell me exactly what happened. I had to investigate first. The Sunshine Home opens at nine o’clock. On the next day, I waited at the gate at half past eight and asked students there about the truth on the previous day. I was told that L cleaned up the bathroom after a student had defecated. Some students were nervous and afraid that teachers passing by might overhear our conversation. I have got the same story from several students and had my answer.
My son didn’t show up at the Sunshine Home on that day. I told the teacher that L needed a day off. His cotton-padded jacket was washed because it was covered in poop stains. He had no extra jacket. A teacher responded that L could not have only one jacket. I told him that I would not let L wear the other one to clean up others’ poop and get dirty even if he had two (indignantly). I told these teachers that it was all right for L to participate in manual labor. However, never would I consent to let him clean the bathroom. In my school, professional cleaners were paid to do that. Hearing my words, teachers at the Sunshine Home told me that they have also recruited professional cleaners to do that. I claimed that I conducted a survey and knew the student that had pooped. I also told them that the student was named Jun. Hearing my words, students there stared in one direction instantly. A teacher asked loudly who told L to do that. In fact, she was the one that told L to do that. I told her that students there were either with ID or mentally disabled. She would frighten them if she kept yelling. That was not my intention. I went there to ask a day off for my son. The students, teachers, and I knew the truth. I didn’t mean to find out who was to blame. L could not go to the Sunshine Home until his cotton-padded jacket was dry. I would not allow the same thing to happen again.
L’s father: In your last interview at the Sunshine Home, you could see a cleaner in blue cleaning up the bathroom. She also cleans the table after students have lunch. Previously, students took turns to be on duty and took care of these matters.
Q: Was it a routine for students to clean up?
L’s father: Sure.
L’s mother: The teacher asking L to clean up other’s poop is still working at the Sunshine Home. On the next parent–teacher conference, a parent, who learned from his daughter that I had been upset, asked me why. I shared L’s experience with other parents.
L’s father: We reached a conclusion at a parent–teacher conference. If the same thing ever happened again, teachers at the Sunshine Home will call the student’s parents to handle that. After all, teachers are unwilling to clear up the mess themselves. Nor should they ask other students to do that. Parents can handle that properly. Later on, Jun’s parents apologized to us. We get along well now. Kids are innocent. It is the teacher that should be held responsible. A student also added that L was playing cards when the incident occurred. The teacher taking care of the mentally disabled asked him to stop playing cards and clean up. I believe that is the truth.
L’s mother: A similar thing occurred before. The Sunshine Home used to be located below our building. The lane is cleaned up on Thursday. I was home when L and his classmates were cleaning up the lane once. There was some green space between every two buildings in our community. It has been dirty. I saw mouse droppings and human feces when I went there to get my bike. No one would clean them up. However, subdistrict officials asked my son and his classmates to do that. I went to talk to them immediately. I was told that the subdistrict office and the Sunshine Home entered into an agreement to have these students participate in manual labor. I asked them whether there was anybody to instruct these students. I was told to ask teachers at the Sunshine Home.
On seeing these teachers, I told them that it was all right to involve these students in manual labor. However, being with ID, they would be unaware and incapable of protecting themselves when cleaning up mouse droppings. A teacher listed the example of a person with ID being employed and working as a cleaner. I replied that cleaners would wear special gloves and use tools. These students with ID do cleaning with bare hands in the outdoors. Who should be held responsible if any of them gets sick? Professional cleaners are unwilling to clean up the area. How could these teachers ask students with ID to do that? I asked them whether any teacher or subdistrict officials would instruct these students.
After my interference, these students were no longer asked to do that. I probably offended somebody. However, I had no other choice. Could the subdistrict office and the Sunshine Home be held responsible if my kid gets sick in the process? My neighbors remarked that L would be in trouble in the Sunshine Home. In my opinion, the subdistrict officials and the teacher from the Sunshine Home have already burned their bridges the moment they asked students with ID to do that. I was not afraid of them.
Q: How old was L at that time?
L’s father: It was around 2006 or 2007. L was 25 years old. The Sunshine Home used to cover two rooms on the first floor opposite our building. It often held activities in the community. Being supported by the community in daily operation, teachers from the Sunshine Home in turn organized students to help clean up the community as a sign of appreciation. However, first of all, these teachers or subdistrict officials should show students how to do that. Second, they should not arrange students to do jobs that others are unwilling to do. For example, rubbish would be thrown from upper floors. Street vendors nearby would poop in green spaces in the community if they had to. As a result, the green space is dirty and full of buzzing flies. Mice have also been seen there.
Q: It is understandable that you would worry about that.
L’s mother: I didn’t do that for L’s sake alone. I also speak on behalf of other students with ID. They cannot be taken advantage of. I saw on TV that a student was forced to wear a bathroom wastebasket on his head in a school in Beijing. Teachers from the school explained that it was a joke among students. I disagree. It is school bullying, just like students with ID being arranged to clean up the green space. The Sunshine Home has been moved to its current location. The incident of L cleaning up another student’s poop happened after that.
Kind-Hearted and Polite
Q: How does L get along with others?
L’s mother: L greets his teachers whenever he runs into them on the road and talks about that after returning home. He also used to get along well with our neighbors when we lived in Dalian Community or Jiaxing Road. He is not familiar with our new neighbors. We teach him to be polite and considerate. We used to live in a building of which the entrance was a big iron gate. We told him to hold the door for senior citizens who had their hands full. He listened and did well.
However, I saw him pulling a person’s hair once. We live on the seventh floor. One day, I came back with him from outside. He walked in front of me. He suddenly pulled a woman’s hair when reaching the third floor. I was stunned. It had never occurred before. I have learned later that the woman was teaching her daughter a lesson. Her daughter was a pupil and might have done something wrong. L did that in an attempt to help the pupil. I followed up in a hurry and asked L to apologize. Later on, I was informed that the woman told others that L pulled her hair on seeing that she was punishing her daughter. Such a thing only occurred once. After that, the woman would greet me when we met.
Q: Did L play with other children in the yard when he was little?
L’s mother: No, we lived in Gongfang, an independent apartment.Footnote 9 Children there did not play with each other.
L’s father: Nowadays, normal people rarely contact with each other, let alone normal children and disabled children or people indifferent age groups. Basically, L amuses himself or plays with us.
Q: Miss Feng, do you have siblings?
L’s mother: Of course.
L’s father: I am the eldest son in the family and have three siblings. My wife is the youngest sister in her family and has two siblings.
Q: L has cousins, hasn’t he?
L’s father: Sure.
Q: Do they keep in touch?
L’s mother: Rarely. For example, the whole family would get together at his cousin’s wedding. These kids do not meet separately. His cousins start to work and play with normal people. We are the only people that play with him.
L’s father: These kids would play with each other when they were little during family get-togethers. They have grown up now and got married. As a result, we don’t meet as frequently as we did. For example, my younger brother may spend the spring festival with his family. As do we.
Adequate Self Care for Shopping and Orientation
Q: When did L learn to dress and wash himself?
L’s mother: L could brush his teeth when he was little. He was taught to brush teeth up and down in Grade One. Consequently, bristles of his toothbrush curl upward and downward. I have already told you that L could not put on shoes or tie his shoelaces in kindergarten. He learned to do these things gradually later.
Q: When?
L’s father: Probably in senior grades in elementary school or in middle school. We would also buy no-laces hoes for him.
Q: Did you teach him to tie his shoelaces?
L’s mother: Yes. He was taught to button and zip in succession.
L’s father: No one is born capable of doing these things. It takes time to learn them. For example, L still ties his laces this way (forming a loop on top of the two ends and tying a knot).
L’s mother: L ties his shoes in the exact way he was taught.
L’s father: One can also tie shoes in different ways. However, L can only tie them that way (gesticulating).
Q: Have you taught him to tie shoes using different methods?
L’s father: No, we would rather let him be. After all, he has already learned to tie shoes via the first way. He is instructed to do that at home. I will show you.
Q: How long did it take for L to learn that?
L’s father: I tied his shoes for him and taught him before he went out. It took about 1 or 2 months for him to learn the skill.
Q: You have mentioned that you would go for a bike ride with L before or after dinner. Did you do it to let L get acquainted with the surroundings?
L’s father: When dinner was not ready or after dinner, I would take L for a bike ride. I installed a small chair with a piece of board to rest his feet on at the front of the bike when L was three. We lived in Dalian Community at that time. The flat was only 12 m2, which was as big as the living room of our current one. Facing north, it was hot in summer and cold in winter. Quyang Community was located behind us. Construction had just started. The place was unoccupied with light traffic. I would ride there to kill time on one hand and point out ways for L on the other hand. L knew the way well. Sometimes I would try to ride along a different way. He might grasp the handlebar and insist on me following the original way.
L’s mother: L knows the way well. He goes to Guangzhong Road to participate in activities held by the waist drum team alone. After we moved here, we showed him the way twice and he could go there all by himself.
L’s father: L knew the area quickly. We moved here over a year ago. He has already got acquainted with the surroundings and told us where there is a lane nearby.
L’s mother: We have showed him the way repeatedly.
L’s father: My wife is anxious about letting him go outside alone. I do not agree.
Q: How well can L take care of himself? You have mentioned that he could not cook, right?
L’s father: He can only dress and wash himself.
Q: Is that all?
L’s father: He can also take a bath, make his bed, and wash socks and shorts independently.
Q: L can wash small clothing items?
L’s father: He cannot wash larger items such as T-shirt.
Q: What about the washing machine?
L’s father: We don’t use it at all. In fact, L outperforms his mother when using home appliances such as the TV. He would even teach his mother how to use a home appliance in some cases.
Q: Can he use a mobile phone?
L’s mother: We are willing to buy him one, but he does not want it.
Q: Can he go shopping all by himself?
L’s mother: Of course, he can buy refreshments. He would tell us that he spent 2 yuan to buy a steamed stuffed bun on his way home.
L’s father: He can buy food to feed himself. My wife had an operation last year and I had to take care of her in the hospital. I gave him 15 yuan for lunch. He preferred wonton at the Qianlixiang Wonton Restaurant. At first, he would order a bowl of wonton which was priced at 8 yuan. Later on, he had to eat one and half bowls, which cost 13 yuan.
Q: Does he know how much change he ought to get?
L’s father: Of course, he can perform basic mathematical calculations.
Q: Does he know that he will get1.5 yuan if he pays 5 yuan for a commodity priced at 3.5 yuan?
L’s father: It is interesting that he will give 5.5 yuan to get change of 2 yuan.
Q: What if he gives 100 yuan for something worth 41 yuan?
L’s father: He knows the amount of change. We have gradually given him pocket money. We would hardly do that in the past. L could keep the change if it is a1-yuan coin. It is a tradition in our family. That used to be the source of his pocket money. Nowadays, we have gradually given him as much as 5 or 10 yuan. I told my wife that we should teach him to spend money since he has already grown up. Last time, he paid 100 for a meal worth 60 yuan and got change of 40 yuan. I let him keep it. My wife would not do that. In summer, he also buys a cold drink which may cost 3.5 yuan. He does not care about the price but buys it if he wants it.
L’s mother: Once, he returned home from Guangzhong Road at half past 12. We asked him why he was late. He explained that the waist drum team was dismissed late. He was hungry and bought two steamed stuffed buns, one being stuffed with vegetables and the other one with meat, on his way home. I told him that he could directly return home and have lunch.
L’s father: Once, when I returned home, my wife asked me to guess how much L spent on a meal. It was 27 yuan. He ate one and a half bowls of shrimp wonton for a change of taste. We never ordered shrimp wonton in the restaurant. We would rather have vegetable and meat wonton which is cheaper. L is not sensitive to the price. He will buy food if he wants it and can afford it. He can also recharge the transportation card independently.
Q: Can L cook?
L’s father: No. We used to soak cooked rice in boiled water and eat it. He never eats that.
Q: Can L cook instant noodles?
L’s father: No.
Q: He knows the way and can buy food for himself. Is that correct?
L’s father: You can say that.
Q: Did he ever spend a whole day at home alone?
L’s mother: No, but he would stay at home alone for half a day. For example, we have bought some financial products. As a result, we may be invited for dinner. My husband would go and I would stay at home to look after L. We would both go if it is a lunch. L can have lunch at the Sunshine Home.
L’s father: We may worry about two things. First is the door. Being alone at home, L will rush to open the door if the doorbell rings. Second is gas. We told him to never touch that.
L’s mother: Safety issues are crucial after we moved here. There were a wooden door and an iron door in our former housing. Others could not enter even if the inner door was open. Moreover, we would tell L to bolt the door after we left. We further locked the iron door from the outside. L didn’t have the key to the iron door. In that case, he would be protected by the iron door even if he opened the wooden door. However, our new housing has one door only. Others can enter directly if the door is open. As a result, we never leave him alone at home. Nowadays, thieves may cheat L if they know that L, a person with ID, is home alone. After all, it is common to see normal people such as college students get fooled.
L’s father: Once, my wife was hospitalized for a week. I asked my younger sister to look after L at her house. My wife has been hospitalized again for a week this time. I managed to take care of L and her all by myself. I left the hospital after nine o’clock at night and returned home to accompany L. I returned to the hospital again after L went to the Sunshine Home.
L’s mother: None of the families we know that have family members with ID would let these people stay at home alone. Previously, neighbors might have given a hand by keeping an eye and looking after the person with ID. Nowadays, neighbors are strangers, leaving readily exploitable loopholes for criminals. I do miss those peaceful old days.
Worrying About an Uncertain Future
Q: L is 35. Have you considered him getting married?
L’s mother: It is tough. Our acquaintances mentioned introducing someone to L. However, L refused.
L’s father: He does not know anything about romantic relationships.
L’s mother: It is also hard for us to discuss it with him. After all, it is impossible to tell whether a couple can get along with each other.
Q: Does L know the concepts of love and marriage?
L’s father: Absolutely not. Seeing a pregnant woman, L would misunderstand her as a conjoined twin.
L’s mother: He saw conjoined twins on TV.
Q: You have not considered the issue for now because L knows nothing about marriage. Is that correct?
L’s father: We are in a dilemma. Our friends care about him and ask about that repeatedly. However, it is complicated. L could get married and have a baby. But who would take care of the baby? We have been exhausted in looking after L.
L’s mother: Someone suggested that we find some girl who comes from outside of Shanghai or is physically disabled. They can be complementary. In my opinion, they should get along with each other first. Their motivation also matters.
L’s father: We were told to find some poor or less-educated girl.
L’s mother: I think it is a question of fate. You can lead a horse to water, but you can’t make it drink.
Q: Have you ever tried to introduce anyone to L?
L’s father: He knows nothing about love and affection.
Q: How do you plan his future?
L’s father: First of all, we hope that the age limit can be raised so that L can continue going to the Sunshine Home after reaching 35.
L’s mother: It is crucial. It is stipulated that students at the Sunshine Home must be 35 or younger. L was born in January 1982. He will be 35 in January 2017 and will be too old to enroll in the Sunshine Home. Teachers there told us that L could spend an extra year at the Sunshine Home because both of us are over 70. Well, the age limit was set when the Sunshine Home was just established. Nowadays, activity centers have been established for senior citizens exclusively to play the waist drum or play chess after retirement. These 35-year-old people are more energetic. If there is a chance, could you please help pass our request on? Can the age limit be relaxed in the Sunshine Home and allow those who are willing to go to continue going there? L behaves himself and has won numerous awards. He can also give assistance to teachers at the Sunshine Home. He is active and participates in a variety of activities. He likes going to the Sunshine Home. It is understandable that an age limit was set when the Sunshine Home was established at the very beginning. After exploring the business for over 10 years, a stable operating model has been developed on the basis of rich experience, and breakthroughs have also been made there. Consequently, the age limit could be raised.
Q: What do you worry about when you think of L’s future?
L’s mother: We worry that no one will take care of him in the end. Being afraid of having another kid with ID, I did not give birth to a second child. I tried to solve the issue. L is the top priority in our lives. I asked about a senior apartment program several years ago. After buying an apartment at a price of 600,000 yuan, my husband and I could move in and pay monthly property management fees to be taken care of. If both of us passed away, the apartment would belong to the property developer. We inquired whether we could involve our son in the program. We even offered to buy a larger apartment or two apartments. The answer was negative. Consequently, we did not select the program. The same goes for nursing homes. No one would take care of L if both of us went to a nursing home.
Regarding relatives and friends, they can only give a hand in cases of emergency. It is impossible for them to take care of L indefinitely. I was fertile 50 years ago. If I gave birth to another child at that time, I would leave all property to him at the premise of him looking after L. The truth is that L only has cousins. Nowadays, some children are unwilling to take care of their parents even if they inherit everything, let alone cousins. I also heard that a nanny murdered a host and took away the property. People do not trust each other as much as they did. It is really hard for us to handle the issue.
L is happy at the Sunshine Home. We hope he can always be happy. Regarding the senior apartment worth 600,000 yuan, we would not move in directly even if we bought it. We would go all out to keep L included in the society. We would move in the apartment if L is no longer admitted to any institution. We are willing to give away our housing if a formal and reliable institution can take care of L and us. However, we do not trust any charitable organization only by name.
Of course, some people are grateful. I watched a video several days ago. A Chinese fellow, who used to stay at an old lady’s place when pursuing postgraduate studies in Norway, has taken care of her in China. The old lady, who was childless, treated him as her own child and helped him a lot in Norway. They kept in touch after the young man completed his studies and returned to China. The old lady was in poor health. As a result, the young fellow took her to China. She liked staying in China and wished to be buried there. The young man has taken care of her for over a decade until she passed away. Then he buried her in a cemetery in China. The young man, together with his parents and his wife, treated the old lady well. However, it is rare to see people like this Chinese guy in today’s society.
Special Olympics entered China over a decade ago, leading to a great improvement in living conditions for the disabled. So long as related actions are taken, changes will occur at the grassroots level. We are fully aware of that.
Q: Do you mean that relevant policies have been made for the disabled in China?
L’s mother: Sure. The government has to work out solutions. It has implemented the family planning policy. As a result, many families have raised only one child, but the child is with ID. No one would take care of the child after the parents passed away. Moreover, families who have lost their only child suffer more than we do. It is an unimaginable tragedy for them. We however have been already preparing for over 30 years.
Q: What is the preferential policy made for people with ID like L? Do they receive an allowance to ease the burden on the family?
L’s father: L receives an allowance of 1,150 yuan.
Q: Is it a monthly allowance?
L’s father: That is correct. L also receives two extra subsidies of 330 and 150 yuan, respectively. In addition, L obtains an annual medical subsidy of hundreds of yuan.
Q: Has L received sufficient subsidies to meet his basic needs?
L’s father: We certainly hope that L can obtain as many subsidies as possible. In fact, the subsidies are sufficient for L. Both of us are well paid but spend less.
L’s mother: We are careful in our day-to-day spending for L’s sake. Economically, L is in an easy situation based on the monthly subsidy of 2,000 yuan and our help. Yesterday, one of my co-workers told me that I was too old to spend a lot of money and suggested that I save money for L in the future. The amount would be sufficient for L to spend for the rest of his life.
While that is true, we cannot leave behind our care and concern for L. I have always been worried about the issue that no one will take care of L after both of us pass away. Because of this constant worry, I look older than my peers. We are older than parents of other students in the Sunshine Home.
L’s father: We are 73 now. Everything works smoothly at the moment. However, we will be 75 in 2 years and then 77 in another 2 years. By then, we will bear more burdens and suffer more problems. It is a universal issue in families likes ours.
Interview with Mr. L’s Teacher
Interviewee: L’s teacher
Interviewer and writer: Yameng Xia
Interview date: December 8, 2016
Interview place: A subdistrict Sunshine Home in Shanghai
L Should Improve His Ability to Take Care of Himself
Q: How do you feel about L’s performance at the Sunshine Home?
Teacher: He is active and helps us do things he is capable of. With a father teaching math, L outperforms others in math.
Q: What kind of things may L offer to do?
Teacher: For example, he helps to serve breakfast and lunch and does some manual work because he is tall and energetic. He has a sense of group loyalty and takes the initiative to work.
He is also a main player in singing and dancing performances. People with ID are also categorized according to levels of comprehension. L understands a new thing faster than other students do. As a result, he is selected to complete difficult and complicated tasks. For example, he represented the Sunshine Home to join in the Shanghai Sunshine Home Talent Show and performed outstandingly in the 24 Game. However, the 24 Game is merely calculation and less attractive or amusing. Consequently, he was able to pass the preliminary contest but failed to enter the final. He is tall and good at both cultural and sports activities. He has often participated in sports events such as playing table tennis and shooting basketball and won awards.
Q: What about L’s shortcomings? Is it hard to manage him?
Teacher: No, L is obedient and well behaved. His parents are teachers and teach him well.
I cannot see major weaknesses in him. He develops good habits and is polite.
Q: Which aspects do you think should L improve as a whole?
Teacher: He should improve the ability to take care of himself. After all, his parents are old and cannot look after him forever. It is also the point I have made constantly. Many families have raised only one child that is with ID. Parents are unwilling to have a second child, resulting in the situation in which two old people take care of a disabled younger one. The child can live comfortably if both parents are healthy. However, parents will get old and have deteriorating health. These children need to be able to take care of themselves.
Q: What do you think are the solutions?
Teacher: I think the government should implement policies in place to help solve these issues. The Sunshine Home is not omnipotent, training students with ID to be capable of everything. It can only help these students to be more capable of taking care of themselves. None of the teachers can train these students to achieve certain quantitative standards.
These students have gone to a sea of special schools in Shanghai but failed to become well rounded. After all, they are with ID and have limited understanding capability. Hence, I think they should be helped in developing the ability to take care of themselves both in the school and at home.
For example, charity institutions can offer opportunities to train these people to complete simple tasks such as tallying commodities in the supermarket or serving coffee in Starbucks. That way, they can make a living. I saw a US film about a person with ID that works in a coffee house. Various challenges have been set to see customers’ and his reaction. For example, he serves an unreasonable customer that mocks him. I think the program reveals problems we may neglect in daily life. People with ID should be helped by the whole society instead of institutions such as the Sunshine Home only. The Sunshine Home covers a small area. We have done everything we can. The government authorities have also done their job. The key lies in the family.
People with ID should be trained as much as possible to take care of themselves so as to have less of a rough time in the future. Their parents will pass away. These people will also be admitted to a nursing home in the end. They need to be taken care of if they lack the ability to take care of themselves. It is known that a nurse has to look after several persons simultaneously in a nursing home. As a result, people with ID will certainly suffer inconveniences in their daily lives. We should not merely teach students knowledge. We aim to teach them to be polite, handle things properly, and get along with others. That way, they will be able to protect themselves when living alone in society. They are protected by their parents now. They will be self-supporting after their parents pass away.
We know that the disabled are vulnerable and should be looked after in society. However, few would put that into practice. For example, the disabled are free to take a bus in Shanghai. In comparison, in cities without such a preferential policy, some children with ID don’t even know how to spend money. It is impossible for them to pay for a bus pass. For example, a person with ID may have a 10-yuan note but need 2 yuan to take a bus. It is hard for a normal person to ask for change, let alone the person with ID. He is not capable of changing the note for ten coins and inserting two coins to get on a bus. These things are trivial. Nonetheless, the truth behind these things is worth thinking about. It is impossible for them to develop these capabilities in the Sunshine Home alone. Nor can a government authority make decisions on a whim and address all of these issues.
I think the key is that people with ID must learn to take care of themselves. After all, they live in the society. The narrower their scope of activities, the worse their living conditions will be. They are born with ID. It makes things worse if they stay at home and watch TV all day.
L has developed the basic abilities to take care of himself. Living far way, he knows the way and can take a bus independently to go to the Sunshine Home. It is clear that people with ID must be trained to master these abilities. I think L needs to develop more common sense. Issues that can be solved by money are not major issues.
Q: Has he ever been absent from school?
Teacher: He has hardly been absent except for family affairs.
Q: How long have you worked in the Sunshine Home?
Teacher: For less than 3 or 4 years. I used to be a community disability service assistant. A teacher here was sick and retired early. I was transferred as a replacement.
This is how I see it. People with ID should not be over-protected. I think it does no good for them if they merely sit around and don’t master the ability to take care of themselves. They should experience setbacks to learn lessons. I do not approve of over-protecting them. They will be completely useless in society. Many of these people cannot wash clothes or use home appliances such as the washing machine and the microwave oven. How will they be able to live independently? In fact, we might teach things they will never apply in daily life. I may be exaggerating a little bit.
Q: What policies have been put in place to help people with ID?
Teacher: Well, in Shanghai, unemployed severely disabled people receive a monthly allowance of 1,150 yuan and an extra subsidy of 330 or 600 yuan according to the level of intellectual disability. In addition, their medical expenses can be fully reimbursed. You can compare it with the statutory minimum wage in Shanghai, which is 2,190 yuan.Footnote 10
Q: What is the relation between the Sunshine Home and Special Olympics?
Teacher: Special Olympics accelerated the establishment of the Sunshine Home. The first International Special Olympics Summer Games were held in the United States in 1968. Shanghai hosted the 12th Special Olympics World Summer Games in 2007. It is also the first Special Olympics Games organized by Special Olympics East Asia. The Sunshine Home admits students in the age range of 16–35. A majority of young people with ID in the community go to the Sunshine Home, making it a reservoir of athletes for the Special Olympics Games. The Special Olympics World Games are held every 2 years. China hosts the National Special Olympics Games annually. So are the Shanghai Special Olympics Games and the subdistrict Special Olympics Games. Athletes are selected at the subdistrict level, the district level, and the city level to participate in the Shanghai Special Olympics Games.
Q: Can you tell us about the operation of this Sunshine Home?
Teacher: Six non-profit organizations such as the Benevolent Society organize volunteers to hold activities at the Sunshine Home from time to time. The Sunshine Psychiatric Garden, which was established for the mentally disabled, shares the same location with the Sunshine Home, which was set up for people with ID, in our subdistrict.
Interview with Mr. L and His Parents
Interviewees: L and his Parents
Interviewer and writer: Yameng Xia
Interview date: December 17, 2016
Interview place: L’s home
An Outgoing Man of Many Interests
Q: We have talked a lot. Can I have a chat with L?
L’s mother: Sure. Come here, L.
L: Yes, Mom?
L’s mother: Just answer a few questions.
L: All right.
Q: What were you doing just now?
L: Watching TV.
Q: Which TV programs do you like?
L: Boonie Bears.
Q: Is it the program featuring two bears, Briar and Bramble? My younger sister also likes it. Do you like watching cartoons?
L: Of course.
Q: Can you list other TV programs you like? What about Animal World and other programs on the Discovery Channel?
L: I do not watch them.
L’s mother: Well, which TV program do you watch at night? Music program?
L: Listening to music.
L’s mother: You like watching music shows, right? Something about Outstanding?
L: Outstanding Song Collection.
L’s father: It is a program playing Chinese folk songs at half past seven in the evening on CCTV-15.
L’s mother: Can you introduce the TV program, L?
L: It starts at 5:50 in the evening, not half past seven.
L’s father: It starts at five o’clock on Saturday.
L: Friday to Sunday.
L’s father: It is on at half past 7 from Monday to Thursday.
L’s mother: Who are your favorite singers, L?
Q: Who are your favorite singers?
L: Singers performing in the Chinese Superstar Concert.
L’s mother: Well, can you list some?
L: Andy Lau and Emil Chau.
L’s mother: And? Do you remember the singer you read about in the newspaper yesterday?
L: Dawei Jiang.
L’s mother: Can you list some of his songs?
L: Where is the Road, the ending theme song to Journey to the West.
L’s mother: And?
L: And what?
L’s mother: What are other songs sung by Jiang?
L: Riding a Horse to Protect the Frontier.
L’s mother: And?
L: Where the Peach Blossoms are in Full Bloom.
L’s mother: And?
L: Spring in the North.
L’s mother: What else? What’s the most famous one that starts with “Ah”? Do you remember?
L: Song of Peony.
L’s mother (smiling with satisfaction): That is correct.
Q: Did you read these names for the first time yesterday?
L’s mother: He has listened to these songs frequently. What did Yunfei sing yesterday?
L: Father’s Prairie and Mother’s River.
L’s mother: Who is the original singer?
L: Jiangyang Zhuoma.
L’s mother: Who else has sung this song? A singer with Teng in his name. Do you remember?
L: Liyuan Peng.
L’s mother: No, someone named Teng?
L: Tengri.
L’s father (asking the interviewer): Shall we ask another question?
Q: All right.
L’s father: Which songs have moon in the name?
L: Above the Moon.
L’s father: That is correct. And? How many can you list?
L: The Full Moon.
L’s father: Yes, and?
L: The Moon Turns Perfect Round on the Day after the Mid-autumn Day.
L’s father: And?
L: Go with the Moon.
L’s father: You have named three. Can you list more?
L: Purple Moon.
L’s father: Anymore?
(L thought hard but failed to name any more.)
L’s father: That is a game the waist drum team frequently play at No. 22, Guangzhong Road. You have missed The Moon Represents My Heart.
L: Bingbing LiFootnote 11 sings that one.
L’s father: L likes listening to these songs. He used to be a basketball fan and watched NBA Games on TV. He could even name all the players in NBA teams in a season. He may have forgotten them now.
L: I watch the game and remember them.
L’s mother: Can you list any of these basketball players?
L: Tracy McGrady and Ming Yao.
L’s father: That was before Yao’s retirement. Can you list players from the Los Angeles Lakers?
L: Kobe Bryant.
L’s father: L used to watch NBA Games. He started watching much less after Yao’s retirement. Instead, he listens to music. Speaking of cartoons, he watches one featuring two bears, Briar and Bramble.
L: I watched it several times during the Songjiang Summer Camp.
Q: Pardon?
L: Songjiang Summer Camp.
L’s father: L also watches drama series. Which is the one you have watched most often?
L: Happiness…
L’s father: Happiness Knocks the Door. Wenli Jiang, a Chinese actress, plays the heroine.
Q: I have not watched it.
L’s father: You haven’t. Well, L has watched it six or seven times. He will watch it if it is on. The hero is called Zheng Song.
L: Jun Song. (Correcting his father’s mistake regarding the hero’s name.)
L’s father: Yes, Jun Song.
Q: Do you still remember the story? What happened?
L: She is gone.
L’s father: Who is gone?
L: The old lady is rescued at the Emergency Center.
L’s father: Which old lady?
L: Zheng Song’s grandma.
L’s father: Yep, Zheng Song is naughty at home. Her grandma falls into a rage and passes away.
L: No, two men go for her.
L’s father: Right, two rascal high school students seduce her. If the drama is on TV, L can sit down and watch several episodes one after the other.
L: I am watching Left Hand.
L’s father: Which Left Hand?
L: Left Hand Family, Right Hand Love.
L’s father: It is a new drama series that recently came on the air.
L: Its Lili Liu again.
Q: Who is Lili Liu?
L’s father: An actress playing a part in the drama.
L: She is with Lu Jiang.
L’s father: Liu plays the role of the sister of Wenli Jiang in Happiness Knocks the Door.
Q: Do you watch the drama because you like the actress?
L’s father: That is correct. He has also watched a drama series telling the story between a daughter-in-law and a mother-in-law. Who plays the role of the mother-in-law?
L: Xiulin Xu. Yuan Lu and Tong Lu also play a part in the drama.
L’s father: Yes. The mother-in-law has three sons. The eldest son and the second son are called Daqiang and Erqiang respectively.
L: Well, Guoqiang Tang, an actor, plays a part in it.
L’s father: Yes. L can understand the story but cannot tell it clearly.
L: I watch other TV programs.
L’s mother: Which one do you watch now?
L: Boonie Bears.
L’s father: L also likes to watch Snooker games and billiards matches.
Q: Can he play billiards?
L’s father: No, but he knows the rules.
(L talked about his understanding of billiards rules in Shanghai dialect.)
L’s father: The player pockets a red to get six points and a black for seven points. And?
(L failed to say anything else about it.)
Q: You and your parents went on a trip to Ningbo last time. Do you remember?
L: I have been to Ningbo.
L’s father: We also went to Changxing.
L: And Xianshanhu Wetland Park. I took a photo there.
L’s mother: My husband will go get it.
Q: Did you enjoy yourself in Ningbo?
L: We ordered too much food.
(L kept saying these words while his father fetched the photo.)
L’s father: These families were in the Special Olympics Oral History program.
Q: I have met this person.
L’s father: This one. This boy also joined us on that day. These three (pointing at the photo) were observed at the Sunshine Home on Wednesday and you went there on Thursday. This boy is from the nearby subdistrict. Six families in our subdistrict and four from other subdistricts have participated in the program of the Special Olympics Oral History. Ms. Zhou organized kids participating in the program for a 3-day vacation in Changxing County, Zhejiang Province. I took L and went there. This is the father in another family participating in the program.
L: I was happy.
L’s mother: He enjoyed himself. He will go on another trip soon.
L: I will travel again in the middle of this month.
L’s mother: They have birthday parties. A girl from the trip celebrated her birthday and invited the other three students. We went there together.
Q: Do you remember your school time?
L’s mother: Which elementary school did you attend?
L: Dalian Community Elementary School.
L’s father: What about junior high school?
L: Junior High School Affiliated Hongkou Educational Institute. I still remember a classmate.
Q: Was he your classmate at elementary school or junior high school?
L: We were not classmates in Dalian Community Elementary School.
L’s father: What is his name?
L: Liu.
Q: Why do you remember him?
L: Eh?
Q: What did he do to impress you?
L: He ran into me.
L’s father: L ran into him once on the way.
L’s mother: Do you remember any of your classmates in the junior high school?
L: Well, He.
L’s mother: That is his teacher.
L: Yes, Mr. He.
L’s father: What was your class director’s name?
L: Mr. He.
L’s father: Your class director.
L: Mr. Xu. I ran into him on Shuidian Road.
L’s father: L also ran into his PE teacher on Guangzhong Road.
Q: Did you like going to school?
L: Sunshine Home.
Q: Do you like to go to the Sunshine Home?
L’s mother (repeated the interviewer’s question): Do you like to go to Junior High School Affiliated Hongkou Educational Institute?
L: My name will be on the screen next week (kept talking about things that happened in the Sunshine Home and not answering the question).
L’s mother: What screen?
L: An activity is held at the Sunshine Home next Friday. My name will be on the screen when Mr. Hong plays it.
L’s mother: What screen?
L: The activity organized by the Benevolent Society.
(No one understood L’s words.)
L’s father: He might be talking about an activity which was recorded yesterday. The video would be played next week.
L: I was there.
L’s mother: You and other students at the Sunshine Home.
L’s father: He tells us about these things. We don’t know whether it is true. Let it be.
L: You can ask my parents. I was on Thirty Minutes in Hongkou, a program on Dragon TV.
L’s mother: You were on camera.
L: I was on camera. Thirty Minutes in Hongkou. Bowling.
L’s father: Sure. This year, Special Olympics organized some activities, attracting the world’s focus on disabled people. These people have been on camera in some TV programs. The person in charge is called Zhen Ni. You have met him at No. 22, Guangzhong Road.
L: We will start off on Saturday. Zhen, as in Dizhen [meaning “earthquake”].
L’s father: Mr. Ni may be 82 or 83 this year. He has indeed devoted himself to this career.
L: He took me to dinner once.
L’s father: He is active and a role model in the system.
L’s mother: He is old. We might have had a brush with him on that day. Nonetheless, he is nice and has committed himself to his career.
L: He takes us to participate in activities and invites us to dinner after these activities.
L’s mother: The waist drum team may have dinner in a restaurant on occasions such as the spring festival.
L’s father: Back then, we spent all our savings on L.
L: Several teachers took Zou to go shopping at E-martFootnote 12 in 2017.
L’s mother: L said that teachers would go shopping for an activity held at the Sunshine Home. Some students will help push the shopping cart.
L’s father: For example, refreshments would be prepared for a party. As a result, teachers may take a student to give a hand. L used to be such a student. He no longer does that now. Can you tell me why?
L: It is far way.
L’s father: Exactly. We live far away from the Sunshine Home. It is inconvenient.
L: I was replaced.
L’s father: A student living near the teachers in charge has replaced L.
L: Mr. Kong and Ms. Lin.
L’s father: You cannot understand L if you don’t spend a lot of time with him.
L: I don’t go. They do. They are strong and ask me to help carry stuff.
L’s father: Strong students have to give a hand and help unload stuff. L is tall. Ms. Zhou often asks L for help if an activity is to be held at the Sunshine Home.
(L talked about an experience of carrying stuff.)
L’s mother: They prepared the scene.
L: We pasted “0” and “2”.
L’s father: Mr. Lei, the parent of a student there, asked L to do that.
Q: Did you like your junior high school?
L (irrelevant answer): I prefer playing with another classmate.
(L’s father repeated the question.)
L: I knew the teacher. I like him.
L’s mother: L joined the class in the middle of the course. He had nothing in common with his classmates. As a result, he didn’t have a friend in the class. I was also aware of that. He is my son. Consequently, he was not bullied. However, he was not close to others. The teacher teaching PE would involve him in class activities. Therefore, he got along well with the teacher. He could not follow other teachers. That is why he does not talk about other teachers. That is our understanding.
L: A teacher got angry at the playground. A student called Zhang hit a girl on the head with a basketball. I was scared to death.
L’s mother: L said that a student accidentally hit a girl on the head with a basketball. He only mentioned the teacher teaching PE because they were close. Of course, the teacher told the boy off.
L: The teacher did not criticize a girl student.
L’s mother: L meant that the teacher would let it go if a boy was hit by a basketball.
Q: L explained the accident clearly.
L’s mother: Sometimes others don’t understand him. We do because we live together.
Q: Are you happy at the Sunshine Home? Do you have any friends there?
(L pointed at the group photo taken at Changxing and was proud.)
L: Look, we have been there.
L’s mother: She asked you whether you have any friends at the Sunshine Home.
L: Of course.
L’s mother: Who?
L: Zhou and Han.
L’s father: Anymore?
L: Sun. They were there.
L’s mother: You need to string together a sentence. You can express it this way. Regarding my companions that went to Changxing together, these are my friends. What’s more, these are also my friends.
Q: Do you like joining the waist drum team?
L: I go there.
Q: Do you like playing the waist drum?
L: I can.
L’s mother: Did you like playing it at first?
L: No, but I like playing it now.
L’s mother: I accompanied you to join the team at first.
Q: Why didn’t you like it at the beginning?
L: There were so many people.
L’s mother: L said that he could not play it at first. Later on, he learned to play it and became interested in it. From then on, he has been willing to participate in the activity.
L: It is crowded. More people will join us tomorrow. We will also make cookies tomorrow.
L’s mother: They are organized to learn to make cookies. Will you play the waist drum tomorrow?
L: Yes, we will. We will do cookies after playing the waist drum.
L’s mother: Make cookies.
L: Make cookies.
Q: Do you play the waist drum first and then make cookies?
L’s mother: Who will teach you?
L: Those volunteers.
Q: Do you like going to the Sunshine Home?
L: I go there. Take 528.
L’s mother: You were asked whether you liked going to the Sunshine Home. You should give a positive answer. Which bus do you take?
L: 528.
L’s mother: Or?
L: 751, 134.
L’s mother: You should add “or” in between. Don’t speak nonsense.
Q: I have noticed that a variety of courses are provided at the Sunshine Home. Which one is your favorite?
L: The Benevolent Society organizes activities.
Q: You like activities held by the Benevolent Society the best, don’t you?
L: It was yesterday. I did not eat up the snacks and candies. I brought them home.
Q: Do you like handwork and making gifts for others?
L (irrelevant answer): I have not eaten them up yet.
L’s mother: Students are usually supervised by teachers. Volunteers from the Benevolent Society and other organizations come from time to time and organize novel activities.
L (pointed at his handcraft): Look, I made this at the activity organized by the Benevolent Society too. There are more.
L’s father (pointed at L’s handmade photo frame): L participated in some activities yesterday and brought back some snacks. These are also L’s work. He pasted them one by one.
Q: L likes playing with volunteers, right?
L’s mother: These children with ID like getting together. It has already become a routine. If it is a student’s birthday, the student’s parents will bring refreshments to all the students at the Sunshine Home. Students like sending and receiving gifts. If it is a hot summer day, fathers will send cold drinks and watermelons to the Sunshine Home. Mothers cannot carry watermelons. They are too heavy. These students will share happily. They also go on trips together. All of these efforts are made to make sure that they enjoy themselves.
Q: Do you prefer going to the Sunshine Home or staying at home?
L: I like playing with people. Yesterday, we played Dafangkuai.Footnote 13
L’s father: Do you remember your game yesterday?
(L thought for about 10 s.)
L: I did this. The traffic lights, red and green.
L’s mother: L might mean that it is go if the traffic light is green.
L: I gestured to go (confused narration and failed to state clearly yesterday’s activity).
L’s father: He cannot make himself understood clearly. He might try to tell you about yesterday’s activity, in which another kid played the role of a thief. Did you go bowling?
L: The red was against the white. Ms. Zhou was there.
L’s mother: Which ball games can you play?
L: I took second place when playing badminton and table tennis. I didn’t get it. Four of us ranked second when playing table tennis.
L’s mother: Who won?
L: Shen from Jiaxing Subdistrict.
L’s mother: I never knew a Shen from Jiaxing Subdistrict. Is he also a student at the Sunshine Home? No, he entered the activity via another channel.
L: There was no first place. Everyone was ranked second.
L’s mother: Rankings are significant for students when participating in activities such as sports activities at the Sunshine Home. L and other players ranked second.
L: Once, I returned home at a quarter past 11 at night after an activity.
L’s mother: The activity ended at a quarter past 11. You ate steamed stuffed buns in a restaurant and returned home at 12 o’clock.
L: I did not mean that one. It was 2 weeks before that week. I returned home late one night. 597 and 875 [stopped].
L’s mother: Well, that was during the Shanghai World Expo.
L’s father: Not that one. L meant the opening ceremony of the 2007 Special Olympics World Summer Games. He returned home late that evening.
L: 597 and 875 stopped.
L’s father: L returned home after 12.
L: A quarter past 11.
Q: How did you return home if the bus stopped?
L: I took 97 to the terminal station and transferred to 47.
L’s father: I didn’t go with him. It was too late. The bus stopped. Ms. Zhou saw to it that these four kids returned home by taxi. I couldn’t sleep and waited up at home. I called Ms. Zhou on the telephone and was informed that these four kids took a taxi to return home.
Q: When did that happen?
L’s father: I forget. It was during the Shanghai Special Olympics World Summer Games.
L’s mother: Their events were on TV. Either of us would stay awake and wait for L if he didn’t return home.
L: I waited for a long time but both bus routes stopped. It was too late.
L’s father: Which bus stopped? Can you express yourself clearly?
L: Both of them stopped after half past 11.
L’s father: L could take bus routes 597 and 875 to return to our original housing. They stopped early at night. If so, L would take bus route 97 and transfer to route 47. Ms. Zhou told them to take a taxi directly. We taught him to take a bus while the teacher teaches them to take a taxi.
L: Well, we were separated and returned home individually.
L’s mother: Who were separated? After arriving at the destination?
L: No, the four of us were separated. One took 597 and another took 875.
Q: Let’s conclude here today. Thank you.
(L stood up and bid farewell to the interviewer when the interviewer ended the interview and left.)
Observation of Mr. L in the Drum Team
Observation time: 09:00–11:00, November 19, 2016
Observation place: Hongkou District Disabled Persons’ Federation, Shanghai
Observer and writer: Yameng Xia
The waist drum team consists of 16 members who are from eight subdistricts. They are divided into two groups. Most members have mild intellectual disability. They cooperate with those having moderate intellectual disability. Instructors include Ms. Zhou, the teacher teaching musical instrument, and Ms. Lin, a student’s mother.
Time | Team activities | L’s activities |
|---|---|---|
09:00 | The waist drum team started to play | L took out the waist drum and drumsticks brought from home to get prepared. The teacher instructed them to form a line according to height. L stood at the back because he was the tallest in the team. The team started to play. The teacher praised L |
09:10 | The team took a break | It was boisterous in the training room. L chatted with his friends. He took the initiative to come over and told the observer that he had played at Mr. Feng’s the day before. Mr. Feng is a teacher at the Sunshine Home. He then looked for his father instantly |
09:20 | Dancing | L danced with ease to the song sung by Phoenix Legend, a Chinese popular music duo |
09:27 | Boxing with the music | After a song ended, L started to dance to another song. He moved like a boxer and shouted out “ha” with the rhythm |
09:31 | The team took a break | L continued chatting with students he knew |
09:42 | Preparing to play the flat drum | L offered to carry the flat drum from the office to the training room |
09:51 | Students worked in pairs to play the flat drum | |
09:54 | The teacher called for a pause to correct them | |
09:56 | The team continued playing the flat drum | |
09:59 | The teacher rearranged participants. | L was asked to stand by and watch |
10:06 | Other students played the flat drum to the song of Without the Communist Party, There Would Be No New China | L stood by and watched |
10:08 | The team took a break | |
10:09 | The team continued playing | L joined them and played the flat drum to the song of Without the Communist Party, There Would Be No New China |
10:12 | L played the flat drum to the same song again | |
10:17 | The team took a break | A student told L’s father that L had asked another student to hit the student in the head and had not watched his language and cussed the student’s mother to die. L’s father explained that L didn’t mean it |
10:34 | Practicing | L stood by due to the limited number of flat drums |
11:01 | The activity was over. The teacher remarked on their performance. The team was dismissed | L packed his belongings and prepared to go home by himself |
Observation of Mr. L at the Sunshine Home
Observation time: 09:00–16:00, December 8, 2016
Observation place: A Subdistrict Sunshine Home in Shanghai
Observer and writer: Yameng Xia
Time | Activities | L’s performance | |
|---|---|---|---|
09:04 | Doing radio calisthenics | L moved his limbs coordinately and performed well | |
09:10–09:50 Psychosocial Rehabilitation Training Course Staff from the Community Health Service Center gives a lesson every Thursday to treat students via psychotherapy | 09:10 | Students carried chairs and formed a circle while preparing for the course The teacher asked students to close their eyes, relax and follow the teacher’s instruction to imagine | L cooperated, looked up, closed his eyes and relaxed. He opened his eyes from time to time and mumbled. The teacher asked them to imagine butterflies flying about amid flowers. Hearing that, L smiled, did not cooperate anymore and fidgeted. He opened his eyes, turned down his lips, scratched his face, and watched the teacher moving around He continued to cooperate. The teacher corrected his posture |
09:16 | The class stood up in a circle to stretch their limbs | L talked cheerfully with the student beside him | |
09:25 | The teacher asked the class to bend down and touch the ground | L cooperated and bent down to touch the ground. He could hold the pose for a long time. L stood up when the teacher corrected others | |
09:30 | The teacher asked the class to swing arms | L was chatting and laughing with the student beside him while swinging his arms. The teacher corrected L alone and remarked that he stood way forward | |
09:35 | The teacher asked the class to wag from side to side | L was chatting joyfully with the student beside him while following instructions L understood clearly to wag from right to left or left to right and helped students that got confused. He shouted left and right during wagging and performed properly The teacher asked students next to L to follow L and wag | |
09:40 | The teacher asked the class to kick out feet alternatively | L shouted “left foot” and “right foot,” and did exactly as he was instructed | |
09:43 | L made a mistake in wagging from side to side and was corrected timely. L kicked out right and left feet correctly | ||
09:46 | The teacher asked the class to hold hands and form a circle and rush towards the center on hearing the teacher’s order | L cooperated with the teacher, held hands with students on both sides, shouted words such as catching fish, ocean, and catching starfish and rushed towards the center and scattered L focused on the game and was happy | |
09:50 | L was criticized by name because he kept chatting with the student beside him | ||
09:57–10:39 Extracurricular activities | 09:57 | The class started to draw on masks | L sat by the window and took the initiative to move forward and fetch pigments |
10:03 | L played table tennis with a teacher | L won in most cases. He is good at table tennis | |
10:06 | L returned to the classroom to fetch abrush. He left the classroom and chatted with his classmates. L played darts for three series, which included five darts each. He didn’t miss the target and two of his darts hit the bull’s-eye | ||
10:10 | L’s father asked L to play the 24 Game | L thought fast and gave the answer within 4 s. However, it took longer for L to solve word problems. L could not calculate quickly how much change he should get | |
10:39 | Lunch | ||
12:40–14:00 | Lunch break | L went to the lounge upstairs. There were sling chairs. L’s chair had the comforter his mother prepared for him | |
14:00 | The teacher explained rules to go bowling and set an example | L responded actively and clapped after the teacher set a successful example | |
14:07 | Six students were asked to go bowling | L was player No. 3 in the boy’s team. He raised his hands to show that player No. 3 was to throw the bowling ball. He understood the rules well | |
14:11 | Obeying the captain’s order, L tried to hit the head pin but missed | ||
14:28 | L knocked down pins in the third row | ||
14:31 | The game was over. A new game started. The two teams saluted to each other | L saluted to the other team | |
14:35 | L sat at a corner, watching the game and chatting with his classmates. His friend was in the game. L applauded for his friend | ||
14:45 | A set ended | L stood up to help set bowling balls and returned to the corner to continue chatting with his classmates | |
15:01 | A set ended | L stood up again to help set bowling balls | |
15:04 | The teacher gathered the students and the activity was over | L was the tallest and stood at the back | |
Translated by Weizhen Yang
Notes
- 1.
L’s parents reviewed and revised the first printed draft. Mr. Xiaodong Yu, another interviewee in this volume, offered help in creating a Word document and input the revised version. The writer thanks him for his help.
- 2.
The post of community disability service assistants has been a part of the “Employment for Ten Thousand People” project launched by the Shanghai Municipal People's Government in 2004. The post has been offered primarily to males at the age of 50 at most and females under 45 with mild physical disabilities and those certified disabled people that are unemployed, in service but not in duty and preserve employment relationship based on agreement due to low vision. If the post is vacant due to a high employment rate of the disabled, it can be offered to immediate family members living with the disabled that are unemployed and preserve employment relationship based on agreement and surplus labor in poor rural households.
- 3.
The “4050 Program” has been implemented by the Shanghai Municipal People’s Government to facilitate reemployment of females above 40 and males over 50. A majority of females above 40 and males over 50 have been unemployed from the end of the last century to the beginning of this century due to reasons such as industrial restructuring in China. It is hard for them to be reemployed due to age and the low education level. In 2001, the Shanghai Municipal People’s Government released a series of policies for reemployment of those above 40 or 50 desiring to work again via effective market and social mechanisms. One of these policies was to develop public service posts in communities.
- 4.
Shanghai won the bid to host the 2007 Special Olympics World Summer Games in 2002. In 2005, the Shanghai Municipal People’s Government set the “Sunshine Action for People with ID” as a practical project to “organize 10,000 people with ID to be treated and trained for simple and easy work tasks to enhance their capabilities to take care of themselves and fit into the society”. In 2007, the practical project was to complete construction of 240 “Sunshine Homes.” On October 1, 2007, Jintao Hu, former President and General Secretary of the Central Committee of the Communist Party of China, visited the Sunshine Home in Quyang Subdistrict in Shanghai.
- 5.
Sunshine Psychiatric Garden is the community rehabilitation institute established for the mentally disabled by subdistricts or villages and towns in Shanghai since 2009. It primarily provides services such as daycare, psychological counseling, therapeutic recreation, and training in basic skills and social adaptation abilities, aiming to bring the mentally disabled back to society and participate in social activities as others do.
- 6.
Miyun School is a special school established for students with ID to receive 9-year compulsory education in Hongkou District, Shanghai.
- 7.
L’s mother means that L is not an athlete participating in the Special Olympics World Games. Special Olympics athletes are not categorized as professional and amateur athletes.
- 8.
Refers to the 2007 Special Olympics World Summer Games.
- 9.
Gongfang originally refers to housing built for factories’ workers and their families. Multi-layered residential buildings with public kitchens and bathrooms were constructed on a massive scale for workers in Shanghai since the 1950s. Housing with independent gas and sanitary fittings have also been built widely after the 1970s. Currently, “Gongfang” is still refers to apartments that are different from shikumen-style buildings but have independent gas and sanitary fittings in Shanghai.
- 10.
Shanghai has increased the allowance to unemployed severely disabled people to 1,270 yuan and its statutory minimum wage to 2,300 yuan per month from April 1, 2017.
- 11.
Bingbing Li is a Chinese actress.
- 12.
E-mart: a supermarket.
- 13.
Dafangkuai is a word game.
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Xia, Y. (2020). Personal Experience of Social Progress. In: Alford, W., Liao, M., Cui, F. (eds) An Oral History of the Special Olympics in China Volume 2. Economy and Social Inclusion. Springer, Singapore. https://doi.org/10.1007/978-981-15-5128-4_3
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