Disabled tutors helping others in new city program

Sitting up, turning over, getting out of bed, going to bathroom ... when the newly paralyzed learn how to take care of themselves step-by-step from scratch, they often remind 35-year-old social worker Xu Tingting of herself 18 years ago, when she knew that she was going to be a wheelchair user for the rest of her life.

Xu is now a teaching assistant with a mutual help program at the Shanghai Sunshine Rehabilitation Center. The program entails rehabilitation training that includes physical, eyesight, hearing, and mental and intellectual disabilities. Xu works for the physical disabilities group, which will serve 85 people for free this year.

The program is generated from a similar project for spinal cord injured patients launched in 2009 by the rehabilitation center and the Shanghai Disabled Persons' Federation. Xu was one of 1,300 beneficiaries of the project. Compared to the old project, one of the most significant changes is that disabled people like Xu are included as trainers.

"I think a large part of my role is to tell people that they can still live their lives and even make self-fulfillment despite having to rely on wheelchairs," Xu told Shanghai Daily. "No one can understand them better than than I do because I went through it all, the rollercoaster ride from despair to hope."

Xu was diagnosed with myelitis, inflammation of the spinal cord, in high school and soon lost all sensation from the chest down. She almost never left home for around three years and it felt like "the end of the world."

Now during the 30-day training, when trainees stay full-time in the rehabilitation center, she is responsible for planning timetables and taking care of trainees' daily lives. She also holds mental health sessions regularly.

"For new patients we would help them mentally adapt to the new situation, showing that they are not alone in the world," she said. "The sense of solitude is common for them as I once experienced it as well, especially when you don't see anyone on a wheelchair in your regular social circle, and you can't help feeling that you're alone."

As for older patients, solving their confusion in relationships with their family and friends can be helpful.

"For example, we had a trainee this time, whose father never felt safe to let her go out of the house," she said. "So we had a role play to simulate the conversation between her and her father to see what she can do to persuade the old man when she's back home."

Meanwhile, in the 18-day visually-impaired group, 49-year-old Bian Feiyun is a trainee born with nearly no sight – with just a little sense of light – due to congenital optic atrophy. She is a role model for all the trainees as she can walk fast and fully take care of herself.

"I can teach them from my own experiences because I know what challenges they may face that people with normal eyesight can never imagine," Bian said. "For example, how to find a piece of clothing you want in the wardrobe, and how to find something you accidentally drop when they are alone at home, and how to do simple chores like cooking or laundry because, let's be realistic, it's impossible for their family to be with them 24/7 for their entire life."

Sun Jinfeng, 63, told Shanghai Daily she started to lose her eyesight in 2021 due to retinal detachment and other eye problems. Since then she had always been in great stress, afraid that she would be a burden to her family. The COVID-19 pandemic just made things worse. After she asked for local disabled persons' federation for help, she was recommended to the mutual-help program.

"I never knew that I can still do much without my eyesight," she said. "I learned how to use smartphones and know how to make video calls with my daughter, and how to walk from the dormitory to the canteen alone. My daughter said, 'You're so smart, mom!' And I feel relieved that our family relationship is actually getting closer."

China has around 3.5 million spinal cord injury patients and about 5 million people who are visually impaired, many of whom still live at home.

That's why the program is not limited to the rehabilitation center. Trainees are taken to supermarkets, movie theaters, Metro stations and other venues to simulate scenes they may encounter in the future.

Trainees are also taken to venues to try bowling, badminton and snooker – even the visually-impaired can try bowling under the guidance of coaches.

"I've never tried bowling before, even when my eyes were good," said Sun. "And I threw only three balls but I still felt happy, because it makes me feel that my future may be brighter than I thought."

Xu said that the mutual-help group can broaden people's minds to see what they are able to do as many people don't know that new technologies are making disabled people's lives easier. For spinal cord injured people, for example, an attachment can turn their wheelchair into a tricycle that can make them move as fast as a bicycle. They can also drive with a special license in a refitted vehicle whose accelerator and brake are controlled by hand.

"Take myself for example, I learned how to do wheelchair Latin dance here, learned how to shoot and edit videos here, and it ignites my dream," Xu said. "I want to start my own self-media channel with friends so that our voices can be heard more in society."

Xie Haixia, who oversees the mutual-help program, told Shanghai Daily that the ultimate goal of the program is to get disabled people back into the society.

"In fact, inviting disabled people to be assistant trainers is our effort to create job opportunities for them, even though they're part-time mostly," she said. "We are now calling on more people in Shanghai – and sponsor some that are from outside the city – so that more can come to us to make a change in their life, and we know that there are still many, many of them."