入乡随俗

公益话剧《愿望树》在中国国家话剧院免费公演。

During my final week in China I was invited by one of my fellow volunteers to attend a show at the National Theater. He was pretty vague about what this performance would entail, but said it had to do with kids with disabilities. When I got there both of my family support organizations were also there! They said it was a special free show for students with disabilities and their families.

The actual show was a play about a special education school in China, and overall it was pretty cool because it highlighted several issues that have come up in my research over this past year. There are two teachers in the play, one experience special ed teacher and one new art teacher with no background in disability. On the art teacher's first day she doesn't know how to interact with her students and ends up getting hit over the head with an easel by a non-verbal girl with autism. Ouch.

She wants to quit because she says that the job is too hard. She doesn't feel like she's making any difference and that all her work is for nothing. Moreover, her mom enters and makes it clear she doesn't want her working with these kids. Why work with these kids when she could get a job as an art teacher at a normal kindergarten or something? She'd make better money and have a much easier job. 

That's when the experienced teacher tells her his own personal story about having an older brother with a disability (go siblings!) His brother was never allowed to go to school and was really terribly bullied as a child (the other kids would call him shazi - fool) and not respected in the community at all. He'd wish every day that he could be "normal" but it got to be too much and he killed himself when he was 15. Very heavy story.

The play also showed the conflicts that can happen between special ed teachers and parents here. The mom of the girl who hit the teacher was brought in by the principal and was not very cooperative. She said at home they basically just let the girl do what she wants and don't bother her about anything that's not a big thing, because they just don't want to deal with the behavior problems. When the teacher's explain that they are trying to use behavior management methods to help the girl, the mom is not very receptive about being consistent with these things at home. She says the teacher's don't understand what it's like to have a child with autism and she storms out. It was interesting that just last week when talking to special ed teachers in Tianjin I heard similar complaints. It's hard for them to put academic or behavioral demands on students who are used to having no demands put on them by their parents or grandparents at home.

They lost me at the end of the play, however. The art teacher has a "break though" when she takes the non-verbal girl to the window to look at a rainbow. The girl then says she wouldn't talk to her because no one understands her. This goes back to some misconceptions I think the Chinese terms for autism (自闭症－ closed self disease, or 孤独症 loneliness disease) create. While it is understandable that you cannot show the long, difficult road of speech therapy, behavioral interventions, education, etc. in a 1.5 hour play, it is pretty unrealistic that the girl would magically start talking and behaving after seeing a rainbow.

My favorite part of the show, however, were the interludes by some of the older students from the Xuanwu Special School (one of the public special ed schools in Beijing), some of whom I know from volunteering. Their first performance highlighted the vocational skills program for adolescents, where they can learn different job skills from hotel housekeeping to computers to cooking to handicrafts. They also sang one of my favorite Chinese songs at the end - 和你一样 (he ni yi yang - The Same as You).

Journey to Hui-Min Heartland

Tibetans weren't the only Chinese ethnic minority we spent time with on our journey out west. This region is also the historical center of the Hui people (Chinese Muslims). The Hui have no major ethnic differences with the majority Han Chinese, but religiously they are Muslim. Today they can be found all over China and there are many in major cities, but many originally come from the Gansu corridor in Northwest China where we were. 

A lot of Americans don't think about Islam when they think about China, but Chinese Muslims had played an important role in the entire country for centuries, such as trading on the Silk Road and the Muslim Admiral Zhang He leading Chinese fleets of the Ming dynasty. However, they also have a long history of rebellion and persecution under Imperial China (such as the Qing dynasty) and most recently under the Communists (especially during the Mao era and the cultural revolution.)

We went to the city of Linxia, which has the highest number of Mosques in China (2,000 in the metropolitan area...and those are just the registered ones!) Being in Linxia was pretty mind-blowing. There were literally mosques on every corner, ranging from (usually newer) very Arabic-style mosques to mosques that had a unique blend of Islam and Arabic writing with Chinese characteristics. Most people (both men and women) had their heads covered and some women were even in full burqa.

Thankfully one my friends in our travel group is studying the Hui for his Fulbright project and could explain a lot of the history and different aspects of the culture to us. We even got to chat over tea with one of the Imams at a mosque we visited. Other than hearing his 9/11 conspiracy theory (which was upsetting and awkward but somehow tactfully handled), it was really cool to hear that the Imam had to say about the history of the mosque and Islam in this part of China.

I have been so busy these past few weeks wrapping up my time in China that I just realized I never blogged about my trip out West. 

Some friends and I were looking for a place to travel over the Labor Day holiday. We ended up choosing to go explore China's wild, wild west of Qinghai and Gansu provinces.

Some of the areas we went to are actually in the Ambdo region of Tibet. Though it is not the province of Xizang that is politically Tibet, much of the population is ethnically Tibetan and the altitude made it clear we were on the Tibetan Plateau. Tibetans are very distinct in their language, which sounds nothing like Chinese and has its own script. They are also very different culturally, which was clear even in the little time I spent there. 

We were privileged enough to have a former Fulbrighter who was still living in Qinghai. Elizabeth studied the commercialization of Tibetan Thanka painting on her Fulbright and is extremely knowledgable about Tibetan culture.

The two areas we visited were Tongren (Rebgong in Tibetan) and Xiahe (Labrang). These towns are include huge monastery complexes with hundreds of monks. Tibetan Buddhism is a very particular kind of Buddhism, with hundreds of deities and ancient rituals there are very difficult for an outsider to understand. The monasteries are like cities unto themselves, with schools of Buddhist learning, Tibetan medicine, and places to eat, sleep, and pray. The air is smoky from burnt offerings and at certain times the sound of chanting can be heard. The insides of the buildings smell like incense and are filled with the most elaborate Tankha paintings that tell stories or teach about morality. Some boys are sent to the monastery to live and become educated as a monk as children. In Rebgong we got to see a debate practice between monks. Whenever they make a really good theological argument they clap their hands really loudly to drive the point home. 

Elizabeth even took us to meet some Thanka painters and see their workshop. The paintings are very expensive based on the level of detail put in them and are exported internationally and to big cities like Beijing. This commercialization of the art form has benefits of making the communities more wealthy, but is also criticized for taking away its purely religious purpose and tradition. This threat to the traditional Tibetan way of life is also present in other ways. More and more Han Chinese are being encouraged to move into Tibetan areas, such as Rebgong where large apartment buildings with gaudy faux Tibetan architecture are being built.

June 1 marked International Children’s Day. Though we don’t really celebrate holidays like this in the US, For me this was extremely exciting holiday because I got to spend it with two support organizations for families with adolescent or adult children with autism or other developmental/intellectual disabilities.

  For one group, Rongairongle, International Children’s Day was an opportunity for them to enter the community and raise awareness. One of the activities they do is traditional Chinese drumming and they perform in the community on holidays. This year they had five performances for International Children’s Day at community events as well as shows for children at a Deaf Rehabilitation Center and pre-school for children with intellectual or developmental disabilities. These events allow them to show everyone what their abilities, without the “dis-“ prefix. I like to think that the loud drumming makes a good statement: they’re entering society with a bang and making themselves heard. At the end of each performance the whole group raises their arms and shouts 融爱融乐， 融入社会 (Rongairongle, Rongru shehui – Rongairongle, Integrate Society!). I don’t think I can adequately express how powerful it is to see them all standing there so proud making such a declaration! They are really paving the way for future generations of Chinese children with disabilities to have better acceptance and services in society.

  This year’s International Children’s Day was especially important because it has coincided with the launch of UNICEF’s annual report: The State of the World’s Children. This year the report focuses on the situation of children with disabilities.

Outdated statistics estimated that about 93 million children worldwide or 1 in 20 have some type of disability. The fact that we don’t even have accurate statistics on this shows how little attention has been paid to people with disabilities on the international development and global health agenda. People with disabilities worldwide are far more likely to live in poverty, fall victim to physical/sexual abuse, or face discrimination, and are far less likely to have any access to education or healthcare. Disability issues are not mentioned in any of the Millennium Development Goals. Even with the 2008 UN Convention on the Rights of Persons with Disabilities (which China is a signatory of), there is a large gap between disability policy and actual practice in many places because of lack of resources and systems.

Re-Defining what is Possible

After my trip to Jiangxi, I continued south for a research trip to Guangzhou. Guangzhou is a huge commercial epicenter of southern China (where many of your "Made in China" goods are manufactured and shipped from!). It also happens to be the home of one of the oldest, best run, and well funded NGOs for disability services in China. Huiling, which now has branches in many Chinese cities, was founded in 1990 and specializes in community services for intellectually and developmentally disabled adolescents and adults. 

A former Fulbrighter based in Guangzhou and doing her project on more scientific aspects of autism in China (especially speech and language) had volunteered with Huiling and put me in touch. In what were probably some of the best days of research I got to see how they are really trying to re-define what is possible for people with disabilities in China.

Since Guangzhou Huiling is the oldest, best funded, and developed non-profit in this area, they have a really extensive set of programs. I was lucky to get to do interviews and observations at several of them. The first was a sheltered workshop for people with moderate disabilities. When I arrived I saw that it was quite an operation! They had over 30 workers there at various jobs. Most of them make handicrafts that they sell at charity sales or online. The handicrafts range from clay jewelry they mold themselves, greeting cards, to weavings and cloth goods. That day they were working on filling some orders. 

That afternoon after talking to some people in the main office I also went to the supported-employment bakery that Huiling just opened in Guangzhou. They have about 9 workers with autism or intellectual disability and 3 job coaches/co-workers there. I spent the afternoon interviewing the head job-coach, who has worked with the organization for years. It was such an incredible thing to watch. Each worker has their own set of tasks and a picture/written schedule mounted on the wall. They transitioned from job to job so smoothly and needed minimal corrections or prompting. They all seemed to enjoy working with each other and it was awesome to see how independent they were. The bagels, bread, and pastries that I bought there were also delicious (you have no idea how hard it is to find a decent bagel in China)! They do most of their business catering breakfasts and things for companies in the commercial hub of Guangzhou.  However, they do have a storefront and are starting to get more foot traffic.

The next day I went to Huiling's adult care facility, which has mostly people ages 25 and above with the most serious disabilities. Most of them have never had access to any type of services in their lives and are now there because their families can no longer take care of them. Few of them live at the center, as Huiling is moving towards a more group-home model, so they go to the center for the day and do recreational activities, physical therapy, etc. The center has challenges (staffing, finances, programming, etc.) , but it clear that the clients are well cared for. 

One of the things I have been most grateful for in China is the chance to make good Chinese friends. My best Chinese friends I actually made during study abroad actually. One of them is Tingting. She was one of the Chinese roommates in my study abroad program and is just an amazing person. She studied art and Chinese painting in undergrad and took this year off to study for and take the admissions test for the fine arts school at Tsinghua University in Beijing.  I’ve gotten to see her twice since study abroad: once when she was studying English at Columbia University in New York the summer of 2011 and in Beijing this past January when she came to Beijing to take the test. It turns out she was successful in the exam and in September will be starting the 3 year Masters of Fine Arts program there. Her birthday is in April so while I was talking to her over WeChat (the voicechat/texting app that is the most hip way to communicate in China now) she said she hoped we would get to see each other again before I leave. She lives in Nanchang, the capital of Jiangxi Province, so I said maybe I could find a way to go visit her. After looking up train tickets and seeing that they were pretty cheap, I asked if I could go the following weekend.

The night train to Jiangxi was pretty uneventful and I arrived in Nanchang bright and early at 7:30 am. I went back to her beautiful condo and met her parents who are both professors of arts at Nanchang University. Her dad is department chair for fine arts and her mom teaches voice and music. She also has the cutest eskimo dog ever! She’s a white fluffy ball of love and was so much fun to play with.

We started the day with a bowl of Jiangxi rice noodles, which is the most common breakfast food and a spicy way to start your day, as well as some fruit and a glass of hot water mixed with honey. Yum! Then we went back and chatted over tea for a while and I marveled at all her dad’s works of art. We met her mom for lunch at a really fancy restaurant where we had a feast of all Jiangxi’s best traditional dishes. This being southern China meant that some of them were more unusual. I ate something that I was told is “like a bullfrog, but not a bullfrog and bigger.” I still have no idea what it was, but I at least got the clarification that it was a frog of some kind. I only had a little piece and if you don’t eat the slimy skin it tastes pretty much like chicken.

In the afternoon we went to one of Nanchang’s only tourist sites. It was really cool and fun that Tingting knows the artists who helped with the restoration.

The next day we spent the day having fun the way people my age in smaller Chinese cities do. We met up with some of Tingting’s friends from high school and first went to an arcade, then to a big lunch, then to sing karaoke (my favorite!) for about 4 hours. We ended the night by relaxing at her house with one of her mom’s friends and her son, who Tingting is tutoring in art.

My last day in Nanchang we went to a small park on the outskirts of the city where there is also a gallery of old famous Chinese paintings. It was really fun to see it with Tingting because she knows so much about art and could explain it all to me. Then we went and had a girls day at a spa with her mom and got facials before I had to head out on my train.

Beijing Union University Presentation

After I met with the Dean of the special education college at Beijing Union University to discuss my project in January, he invited me to give a talk about my family and inclusive special education in the United States. It was more or less the same talk that I’ve given before. The talk was scheduled to last for two hours, so I timed it to have me talking for 1.5 hours leaving a half hour for Q&A. It was, as usual, all in Chinese. Thankfully, I’ve given it so many times I have it pretty much memorized.

The room was packed with about 100 students who are all special education majors. After this talk I realized that I need to adjust my expectations for presentations more according to the audience. It was the same kind of slight disappointment that I felt when I gave this talk to my autism education classmates at Beijing Normal University on the last day of class. I noticed that the facial expressions of the students are so much different than those of the families or teachers who have spent years at this work. It’s the difference between those who are engaging with what I am saying on a more intellectual, rather than personal, level. They listened attentively for most of the talk, but at the end no one asked any questions. It is the exact opposite of when I have given the talk to parents, when I am mobbed with difficult questions that go on forever. This time after I finished all the students just sat quietly because they didn’t want to be the one to stand up and ask a question. Some of the professors asked me questions and the students then filed out of the room.

However, a group of about 10 students hung back and gathered around me. Although there were one or two of them who seemed to mostly just want to get my e-mail address for English tips or to take a picture of my “big colorful eyes”, most of them were more interested in talking with me further about my presentation.  They all had notebooks and were interested in hearing me talk more about specific topics I had covered, such as different types of sensory integration techniques, PECS (Picture Exchange Communication System), or exactly how regular education teachers modify the curriculum and promote social interaction in order to make inclusive education work.

Building an Inclusive Society

On the most picturesque Beijing Sunday afternoon, I got to bask in some gorgeous spring weather and observe/volunteer with a family support group that is itself growing and budding. This is the family support group that the parents started at Enable in 2011. The mothers I met who started it invited me to their bi-weekly sports activities, which have just re-started now that the weather is nice.  The group is called 融爱融乐 which roughly translates to "Inclusive Love Inclusive Happiness". Their mission is to provide support for parents with adolescent/adult children with autism or intellectual disability and to advocate for a more inclusive society. From what I'd been told they seem to be an active group and I was so excited!

I arrived at the basketball courts at a local park where the group's bi-weekly sports activity was going to take place. There were over 30 volunteers there from some different colleges in Beijing and almost 30 athletes, who are all teens and adults with developmental or intellectual disabilities. Before the athletes arrived with their parents, a professor of Special Ed and his student gave the volunteers a brief introduction to the activity for those who had never been before. Each volunteer was paired one-on-one with an athlete. Before taking them to play with the various different balls/sports equipment that was there, the volunteer spent some time talking to the athlete and their parents to get to know them. Then they were allowed to play any of the games they wanted based on what the athlete likes and their different interests. The idea is to build relationships and friendships between the athletes and the volunteers.

After almost 2 hours of free time, the special ed student, a music teacher and I led the whole group in relay races, some song/dance games, and the ever-popular parachute. I thought the activity would be over then, but it turns out that there was another group of athletes, who were younger or had more significant disabilities, who came right after! We did essentially the same thing but had half the amount of free time at the beginning so it was a little shorter.

It reminded me a lot of the gym program my mom used to run when she first founded my home town's Special Olympics team, though lacking her same sense of structure and emphasis on building different skills. However, I think that not only was the day a total success in terms of giving the athletes a really fun day, but also in terms of working towards the goal of an inclusive society. Watching and interacting with the volunteers was awesome. Many of them had worked with the group before and keep coming back. They weren't all special ed, social work, or psychology students doing it for profesional experience either. One guy I talked to was actually an economics student at Renmin University, which is one of China's highest ranked schools. Chinese students don't have the same culture of volunteering as students in the US do. In high school they spend  most of their time studying and in college if they do volunteer it tends to be one-time service events, such as the Special Olympics one I attended. 

But this type of sustained volunteering and relationship building is the best. because not only did the athletes get a good opportunity for social interaction, but the volunteers learn to see people with disabilities as individuals and not stereotypes. They learn to see their incredible abilities not just their differences. For example, there was one athlete who came up to me, said "Hello!" and then proceeded to ask me about myself in completely unaccented English. He also could sing everything from Taylor Swift to Bon Jovi. One of the volunteers commented that the athlete's English was better than his. Although the volunteer might score higher on the TOEFL, the athlete had an incredible memory and had enough confidence to actually go for it and speak to me.

After we returned from our adventure on the mountain we spent the next day and a half walking off the soreness in our muscles. First was exploring the Ancient Street of Tunxi where we were staying. It was relaxing to brouse in the different shops selling tea, traditional Anhui snack foods (pickled chili vegetables, hairy tofu, among others), and calligraphy/paintings/carvings.

The next day we took a bus to the small picturesque village of Hongcun. Hongcun is a functioning village where people still live, but it has a lot of well preserved Ming and Qing dynasty architecture and farmland, so it is a really popular destination for art students, photographers, and tourists. It is such a blast from the past that it is where parts of Crouching Tiger Hidden Dragon were filmed. Luckily, most of the Chinese tour groups with their obnoxious loud speakers and matching hats stay on the main shopping street, and it's not easy to get away from them and lost in the alleyways of this little piece of the past. The buildings are beautiful and in a much different style than Beijing. Mom also especially liked seeing the traditional gardens kept by most of the families, where radishes and other vegetables were growing. She would definitely love to spend a lot of time in those. Our strolls sometimes left us completely alone and it was peaceful and quiet, except for the occasional sound of fireworks on the hillside scaring away evil spirits since it was Qing Ming (the grave sweeping holiday). So we strolled and sat while eating corn, chicken, and an unidentified type of local street food tart filled with vegetables, and took in the slower pace of life.

After a few days in Beijing we flew down to Anhui province to climb Huangshan. Huangshan is one of China’s most famous mountains and its legendary beautiful scenery makes it the subject of more than a few Chinese paintings and poems. Mom has never really been an urban dweller, so this was the perfect opportunity for her to get out of the city, see a different region of China, and take in some nature and rural life. It was also a great opportunity for me to clean out my lungs a little bit. 

And boy did our lungs get a work out! Climbing Huangshan is hiking with Chinese characteristics. If you have seen my blogs about my jaunts in the Fragrant Hills and Baiwang Shan outside Beijing, or my epic 2 day journey staying in temples and fending off monkeys on Sichuan’s Emei Shan, you may know what Chinese hiking on mountains means. It means stairs. Miles and miles of stone stairs. Just when you think you're getting close there will be another round of 50 stairs and by the time you reach the top of that, the lactic acid is building up in your legs and you need to take a breather.

Luckily, both my mom and I are in great shape (she even more than me). We were also blessed with the most perfect weather anyone could ask for, so this difficult exercise was actually a lot of fun. It was a 6.5 km hike up and another 1 km from the top to our hotel. But mom and I didn’t stop there. Although the mountain was already pretty on the way up, we spent our afternoon on the mountain hiking up, down, and all around the different peaks. Huangshan’s gorgeous jutting granite peaks are absolutely breathtaking and it is impossible to capture on camera just how vast the views are. They are also have very interesting names with stories behind then, such as “Monkey Gazing Out over a Sea of Clouds”, which has a rock that is perfectly shaped like a monkey. We then were able to see real monkeys (Tibetan Macaques to be precise) on the mountain. They were not of the bullying, bag snatching sort that I had to deal with in Sichuan either. Another favorite was "Beginning to Believe Peak". Legend has it that a man was skeptical of the tales of the mountain's beauty, but when he reached that point he stood in awe and began to believe. That night we rested our legs and read as the sun went down on the peak and curled up with the space heater in our hostel.

We woke up before dawn the next morning and spent an hour watching the sky gradually lighten over the mountains and then finally the brilliant pink sun finally emerged. After that we spent the day on the epic descent down the Western side of the mountain.  The descent was actually partially an ascent, that took us over a few more peaks before sending us down down down, knees and ankles screaming for the last kilometer or so.