“Light and sound story” taught by deaf people in Jamaica Sugar date
Is this a group of people with double disabilities?” At the end of May, the reporter received a call from Zheng Xuan.
Zheng Xuan, my country’s first independently trained Ph.D. in deaf linguistics, is currently a special professor at the Faculty of Education, Beijing Normal University Professor at the college, specializing in the psychology and education of hearing-impaired children, sign language linguistics, and psychological counseling for people with disabilities (see relevant reports in Xinhua Daily Telegraph Grassland Weekly on June 24, 2022). hearThe dual elements of a disabled person and a researcher give her, who is gentle and easy-going in life, an almost stubborn sense of mission for her work.
This sense of mission is embodied in daily tasks and condensed into the word “busy”. In addition to her daily teaching and research work, Zheng Xuan also travels to special education schools across the country to provide transportation guidance and provide specialized research support for families with special children. The reporter once reported on her process of editing a sign language book. Recently, she has begun to study theoretical and practical skills in psychological counseling, hoping to provide more specialized help for people with disabilities…
“Being in Beijing tomorrow, flying to Chongqing today, and arriving in Guangdong the day after tomorrow” – Zheng Xuan’s circle of friends is a complete portrayal of the life of a “flying trapeze artist”. Previously, when reporters made appointments with her for interviews, they often received polite but helpless remarks. The moderator responded: “Actually, I’m sorry, I have to go on a business trip that day…” On her schedule, special education work is always the first priority. Therefore, the reporter was a little worried when she received the unsolicited call from Zheng Xuan. Unexpectedly, until I heard her explain the reason for the call – for a helpless mother and her baby who was less than 9 months old and was born unable to see or hear.
“Catching up” with the “Helen Keller’s mother”
First receive help and then lend a helping hand. This is the normal process for us to help others. But Zheng Xuan “actively fought back” and almost “chased” the mother to help.
While “diving” on Xiaohongshu, she occasionally came across notes posted by netizen “Xuanxuan’s Mother”. The picture showed the treasure pink The cute little face, but the accompanying text is more stringent than the last sentenceIt’s heart-wrenching – “Lovely genetic mutation” “I can’t control my eyeballs at all, God is so unfair to me”… She clicked through the notes one by one and read them carefully. Zheng Xuan discovered that this mother was less than one year old. Her child Xuanxuan was diagnosed with acquired amaurosis. This is the earliest and most serious form of retinopathy. The function of cone-rod cells in both eyes is completely lost at birth or within one year after birth, resulting in acquired blindness in infants and young children. Some children are complicated by neurological deafness. At this stage, the medical community still lacks the means to effectively control this disease.
“This is not possible! I’m afraid of wasting time!” Seeing Xuanxuan’s mother still trapped in the dilemma of having no way to seek medical treatment. Frustrated, Zheng Xuan was anxious.
“The progress of medicine is the beginning of education.” In the field of special education, a consensus is: the earlier scientific intervention is involved, the greater the help to children. ” I had to tell her immediately what we could do in terms of education and rehabilitation given the child’s current situation. “Having followed and cared about the hearing-impaired group for many years, and brought deaf-blind education into the research field, Zheng Xuan’s unshirkable drive came back. She did not open a real-name account on Xiaohongshu, so she immediately asked her teacher to contact her via private message When contacting Xuanxuan’s mother, in order to “prove her identity”, Zheng Xuan asked her teacher to not only clearly state her intention, but also send her resume on the official website of Beijing Normal University. But even so, the other party still refused at the beginning. I’m dubious
Facing the interview, Xuanxuan’s mother frankly told reporters that she is now surrounded by pain and powerlessness, and The child’s situation was posted on social media to ask for help. Some enthusiastic netizens bought things from her live broadcast room to help relieve the financial pressure faced by the big family. Some people also sent Xuanxuan milk powder, clothes and diapers… But at a more specialized level, the help netizens can give her is actually limited. After all, most people are interested in Jamaicans Escort audio and visual. The understanding of the disabled may all come from Helen Keller and her “If You Give Me Three Days of Light”. In the message area of Xuanxuan’s mother’s account, people often use the American writer’s story to encourage her not to give up hope. However, No one can tell her exactly what to do to help Xuanxuan open a line of communication in darkness and tranquility “like Helen Keller”The mouth of sunshine. “Suddenly a teacher from Beijing said that he would come to help me. I couldn’t believe it. What should I do if I am worried about being a ‘medical support’?!”
Finally, Xuanxuan’s mother responded to the moderator Zheng Xuan, hoping to make a video call to understand with her own eyes the situation of the Beijing Normal University professor who took the initiative. She also confirmed through various channels that Zheng Xuan on the other end of the phone was indeed an expert in the field of special education and was indeed familiar with the hearing-impaired group. “Later we added WeChat, and Xuanxuan’s mother asked me, do you want it to be free?” Faced with such “precautions,” Zheng Xuan didn’t mind and put the other person at ease in a good-natured manner. In the past few years, she has contacted many The blind and deaf people and the families behind them can understand their lack of direction. “They don’t know who can help them.”
One fact is that even in the field of special education, scholars engaged in research on deaf-blind education are only one in a hundred – not because they don’t want to, but because it is too difficult. ” Meeting the needs of the visually and hearing impaired is the most difficult, because the obstacles caused by blindness and deafness are by no means as simple as 1+1=2. “Zheng Xuan explained that the blind can rely on hearing and the deaf can rely on vision, but the visually impaired and hearing-impaired can hardly rely on both ends. “They will face a larger language gap, and teachers in deaf schools and blind schools are different. It will definitely be able to communicate with them smoothly; some blind and deaf people cannot even walk well on their own, because the visual and hearing impairment will affect their sense of balance, separation, and proprioception…”
But “the road is not easy to walk” does not mean “there is no way to go.” In order to help the “most difficult group” of the visually impaired, Zheng Xuan and her The team searched everywhere and found some feasible methods. She was eager to tell Xuanxuan’s mother about these methods, “I know she is in Guangzhou, and I happen to be going to Guangzhou to give a lecture to parents of hearing-impaired children. There is a lot of connotation. The incident also suited Xuanxuan’s situation, so I invited her to listen and asked her to chat alone. ”
Zheng Xuan came to the right place for this trip to Guangzhou.
During the meeting, Xuanxuan’s mother had tears in her eyes and looked nervous and depressed. She told reporters: “I was very heartbroken at the scene that day! “The child was diagnosed with an irreversible disease when he was less than one year old. The young mother was caught off guard by fate and was trapped in pain and anxiety. She was unable to take into account that she was a hearing-impaired person. What can parents of children do?
“I can see that she is still trying to adapt and accept this element. “That day, Zheng Xuan started from the most basic concepts of “what is a special school and what is a school for the deaf”, and also introduced the teachers who participated in the early participation of Guangzhou Children’s School to Xuanxuan’s mother, “Please cooperate with us. Help them.” At the end of the lecture, they ate lunch together. Zheng Xuan obtained Xuanxuan’s mother’s permission and conducted a scientific interview with her. Zheng Xuan said: “I know that it is impossible to interview such parents. The most painful trauma in their hearts must be avoided, so during the interview, we must also take on the responsibility of comforting and bandaging to provide them with the necessary psychological support. ”
“She is so fierce! I have been caught in the rain and want to hold an umbrella for others! “This is what Xuan Xuan’s mother said about Zheng Xuan, “Teacher Zheng is deaf. She got a Ph.D. through study and now teaches graduate students. She talks to me and has such a good temperament…” Zheng Xuan’s appearance impressed Xuan Xuan. Mother Xuan brought strength. “Teacher Zheng told me to grow up with my children and become a person who lights up their children. “She seemed to be “awakened” by this sentence. As a parent, she could not give up., Can’t fall in tears, the child needs to be equipped with cochlear implants, and needs to receive language and sports rehabilitation training. She still has a long way to go with her child.
After talking to Zheng Xuan that day, Xuanxuan’s mother took the initiative to record a gratitude video and upload it to social media. Zheng Xuan hesitated, worried that such “exposure” would put pressure on Xuanxuan’s family. “Some netizens said that I was ‘miserable’!” Xuanxuan’s mother said frankly, but she still took the video. She wanted more people to see the visually and hearing impaired community, and also wanted to show people who were in a similar predicament as her. People see a future. For Xuanxuan’s mother’s wish to be “seen”, Zheng Xuan called the reporter.
When being interviewed, Xuanxuan’s mother told reporters that Zheng Xuan’s “seeing” pointed out the direction for her, “It is better to have someone to guide you than to explore alone. It’s like someone is supporting you from behind and telling you the way to go, so you won’t be so tired. ”
See “The Story of Light Sound”
Zheng Xuan “saw” the visually and hearing impaired group during her exchange teaching in the United States from 2016 to 2017. At the deaf school she visited, she found that a small number of students were in class There will be a teaching assistant sitting next to him, who will “copy and reproduce” the contents of the sign language that the teacher lectured on the podium at a very close distance. These students will close their eyes and stare at the teacher’s hands. She would also use her hands to touch the inner things of sign language to achieve the effect of “listening to the teacher”. Later, she realized that these children who “touched sign language” were hearing-impaired and low-vision people.
“I willI can sympathize with their difficulties because I am hearing-impaired and a little farsighted. I don’t like to wear glasses, and I often have trouble hearing and seeing clearly. “Every time I interview Zheng Xuan, she will repeatedly mention the word “empathy.” She has never been a bystander to the needs and difficulties of people with disabilities, but puts herself in their shoes to experience and think about it; she develops a new one every time The research field is not simply based on the perspective of “doing knowledge”, but hopes to actually solve some problems.
After returning to China in 2017, Zheng Xuan began to pay attention to the visually impaired and their educational issues, but that was 7 years ago. “There is almost no one in the world who specializes in relevant research,” although there is no precedent to follow. , Zheng Xuan still wants to do this: Although the blind and deaf people are “the majority of the majority”, they face “the difficulties of the difficulties” and they should be “seen”
Setting this research direction, Zheng Xuan began to “follow” the blind and deaf people. Day.
“Are there any children here who have poor hearing and vision? “Every time she goes to a school for the deaf or a special school for transportation or teaching, this is a question she talks about. She and her research team set up a WeChat group, and most of the group members are people with visual and hearing impairments and their families. She named the group “The Story of Light” – bright light, sound of sound. Destiny tried to imprison the blind and deaf people in a dark room, and Zheng Xuan wanted to use education as a fulcrum to help them open a crack.
”Some blind and deaf people are not completely blind plusJM Escorts For those who are completely deaf and still have a little bit of residual vision or hearing, we will use it. Those who have residual hearing will have cochlear implants, and those who have residual hearing will have cochlear implants. Those with partial vision can use some reduced equipment as help; in addition, the sense of touch of the visually impaired is intact, and they can use tactile sign language to communicate, which is simply “touch sign language with hands”; and then, and Similar to blind people, people with both visual and hearing impairments also need to receive some sports training as early as possible, such as learning to walk directionally. “Zheng Xuan usually speaks slowly and slowly, but when it comes to special research knowledge on deaf-blind education, she speeds up her speech, as if she is in a hurry to let more people understand.
A few years have passed, as the research team has gained a deeper understanding of the hearing-impaired group, and the “Story of Light and Sound” has also expanded like a snowball. There are currently 71 people in the group. Among the members, there are “trapeze artist” Zheng Xuan who “asked” and “chased” from all over the country, and many of them are from the group of patients with rare diseases – some rare diseases can also take away the patient’s hearing and vision, in addition to acquired diseases Amaurosis, and Usher syndrome. The latter is also called hereditary deafness-chromogenic retinitis syndrome. Its symptoms are acquired hearing impairment and progressive visual field loss. Many patients start with night blindness and gradually worsen. Until daylightOut of sight.
Like the dice thrown by the devil, the probability of being hit by this cruel disease is so low that ordinary people are not interested in it. Their names are very unfamiliar. Even some patients don’t quite understand the direction in which this rare disease will develop. When Zheng Xuan was teaching at Chongqing Normal University, there was a student like this. He was diagnosed with Usher syndrome, but little was known about its course and intervention methods. After Zheng Xuan started research on deaf-blind education, the teacher also faced the disease more objectively and scientifically under the guidance of the teacher. After learning about relevant cases and help methods at home and abroad, he now began to popularize science about Usher syndrome on the Internet and help patients to the best of his ability. Some patients in the patient group also participated in “Guangyin’s Story”, trying to open up a hole in the “airtight” life.
Even if it is “rare”, it cannot be ignored. Only by understanding can we avoid “unsolvable”. This is Zheng Xuan’s attitude towards rare diseases and her attitude towards the visually and hearing impaired in 2023. Jamaica Sugar A report released shows that among people under the age of 40, the incidence rate of blindness and deafness is less than 0.1%. “Although the probability is low, once it falls on someone, a family will be destroyed!” Moreover, the report also pointed out that among people aged 75 and above, the prevalence of blindness and deafness is as high as 6%! It can be seen that there are many people who need help. Zheng Xuan expressed her original intention to continue to follow the “niche” direction of caring for blind and deaf-blind education, “In fact, what I can do is very limited, which is to guide the visually and hearing-impaired people and their families with the support of specialized research in education and rehabilitation.” To tap into your own strength. “She said that she is by no means an “all-around” expert, “Each of us is an expert in our own life.”
Recently, “Guangyin’s Story” welcomed a new group member – Xuanxuan’s mother. Although she knew that the road ahead would be difficult, she still found the strength to move forward little by little. “A netizen left a message for me. , saying that her child had the same disease as Xuanxuan. She took her child to Beijing and Shanghai for rehabilitation, and she spent a lot. Now her child is two years old and can already recite Tang poetry! “There are people to lead and work with others,It was seen that Xuanxuan’s mother was no longer as lonely and helpless as before. She wrote a note in Xiaohongshu to thank Zheng Xuan, and to encourage herself and her children, “Mother cannot fall down, she must help you up.” ! ”
On the other side, Zheng Xuan and her team, who are “chasing people to help”, are still on the road. I saw two articles about blind and deaf people written by a disabled writer from Shaanxi. I have contacted the pair of visually and hearing-impaired rural brothers and sisters written in the article…”
(Trainer Li Zeyi, Zhang Yixin and Luo Yuru commented on this articleThere are also contributions)