The moment he took over the badge, Kang Rui had a big smile on his face, although he couldn't really understand what it meant to be hired.
But in the eyes of her mother, Xia Jing, that small badge is the ticket for an autistic son to officially step into society, "which means that he is not detached from society, and he can be a useful person to society." ”
From being said to "such children are still brought out less", to entering a special education school to complete high school, to mastering painting skills through rehabilitation services and then getting job opportunities, Kang Rui's experience is also the epitome of the society's rejection of mentally disabled people from exclusion to acceptance for more than two decades.
▲ Kang Rui, who is learning to dribble under the crotch in basketball class. Courtesy of respondents
According to the results of the second national sample survey of persons with disabilities, there are 8.27 million people with mental disabilities in China, accounting for about 10% of the total number of people with disabilities. According to the statistics of the China Disabled Persons' Federation, in 2020, the number of mental and intellectual disabled people receiving rehabilitation services nationwide was 2.648 million, an increase of 210,000 over 2019. In July 2021, the State Council issued the "14th Five-Year Plan" for the Protection and Development of Persons with Disabilities, which clearly stated that it is necessary to comprehensively promote community rehabilitation services for mental disorders and include standardized training of rehabilitation professionals and technicians into support.
Some neuroscientists believe that mental illness is a bug in the evolution of the human brain. For this special group, it is never an easy task to step out of the house, integrate into the community, and go to the society. But even so, many of them, under the increasing benign intervention, are trying to build a stable connection with the outside world.
"Are you sick again?"
"No one wants to live with a lunatic." When he said this, Cui Guangjun's mood was stable and his language expression was also very clear. As a schizophrenic, he bluntly says that this is the result of a long combination of rehabilitation training and drug control.
As a persistent, usually chronic major mental illness, schizophrenia is also known as the "black box" to crack the mental illness, and the cause of the disease is still unclear, and it is recognized as the result of the joint action of multiple genes and factors. According to the World Health Organization' statistical survey, the disease mostly occurs in late adolescence or early adulthood, ranking third among the most common diseases that cause disability.
Cui Guangjun did not want to become a "madman" in other people's population, in fact, no one had ever really called him that in person. But the reality is that after decades of carrying "this disease", he can only live with his mother now that he is the age of huajia.
▲ Cui Guangjun has been doing rehabilitation training in the warm home of the asian games village for a long time, and the picture shows him performing music and art in the event. Courtesy of respondents
When he was young, Cui Guangjun also dreamed of the future with great vigor. In 1978, at the age of 16, he was assigned to work in a printing house. Huge printing presses, swirling paper, roaring jobs... At that time, Cui Guangjun felt that everything was fresh and vibrant.
However, working day after day in the noise of more than a hundred decibels, the initial enthusiasm gradually faded. At that time, he was mostly scheduled to work the evening shift, five days a week, he had to stand by the printing press at 3 p.m., the roar of the machine bouncing back and forth in the factory, and when he left work at 11 o'clock in the evening, his ears seemed to be deaf.
Cui Guangjun began to feel that he was slowing down day by day, and his movements were becoming more and more solidified as the paper went in and out of the printing press. He felt that he had also become a tireless machine, and once he rested, he fell into a hollow silence as if he had been cut off from power.
"It turns out that after staying with the machine for a long time, people will really slowly fall off." Choi Kwang-joon recalled slowly.
After working like this for nine years, in 1987, he suddenly had auditory hallucinations, and he could no longer control his emotions, "I always wanted to drop things, and I always felt that someone was following me." "Forced to do this, the factory replaced him from the printing assembly line and arranged for him to enter the logistics work, responsible for some cleaning, checking the water and electricity meters.
But the situation has not improved. In 1990, Choi Kwang-joon was diagnosed with schizophrenia and was a second-degree mental disability. Because of family conditions and other reasons, he wanted to continue to stay in the factory, at least without having to make another living, and the factory also accepted him, the only requirement was that "no one else could be influenced".
Choi Kwang-joon completely shut himself off and rarely talks to people. In 2008, the printing plant closed down due to business problems, and Choi Kwang-joon lost his job, at this time, he had lost the ability to communicate in language.
Not being able to form his own small family is Cui Guangjun's regret all along. He felt that illness had disqualified him from starting a new family—after all, even in the presence of his siblings, "this disease" was an irrevocable barrier.
In fact, since November 26, 2008, Cui Guangjun has always insisted on doing rehabilitation training in his warm home in the streets of Asian Games Village in Chaoyang District, Beijing. Through training and medication, his condition has improved significantly, and he can participate in chats during family gatherings during the New Year's Festival. However, as soon as his voice was raised slightly, the brothers and sisters immediately became nervous: "Are you sick again?" ”
"Such children are still less to bring out"
Trauma from one family member often spreads throughout the family. Wang Lu, the mother of a Down syndrome patient, knows what it's like.
In 2002, at the age of 37, she became pregnant. This is Wang Lu's first child, and her heart is full of expectations. For advanced-age women, antenatal screening for Down syndrome is now a recommended project, but it has not been widely promoted at that time. And Wang Lu also has her own concerns, she is worried that amniocentesis will bring the risk of miscarriage, and finally gave up the examination. "In order to save the tire, this seems to be no longer a multiple choice problem."
Unfortunately, the unfortunate probability still found her. Not long after the birth of his son Li Zongyang, he was diagnosed with Down syndrome. The joy of a new motherhood was completely shattered by the doctor's few words, "This is a disease caused by chromosomal abnormalities." Children with this disease, as soon as they are born, are more special in appearance, and in the later growth process, they will also have obvious intelligence backwardness, growth and development disorders and multiple deformities. ”
▲ Li Zongyang. Courtesy of respondents
How to raise this child has become a tricky problem that the new parents will have to face soon and even always have to face. In order to take care of her son and ensure the family expenses, Wang Lu and her husband decided after consultation that her father would take care of Li Zongyang's life and living, while her mother's focus was on work and supporting the family, and occasionally taking care of her son. At that time, Wang Lu believed that although her son was somewhat special, as long as he and her husband shared a good job and did their best, they could still manage their lives safely.
However, when Li Zongyang was 12 years old, her husband resolutely chose to become a monk, which caught Wang Lu off guard. She felt that perhaps she had underestimated the pain and stress of her partner. In desperation, she can only retire early and accompany her son wholeheartedly. Just like that, in the blink of an eye, it's another 7 years.
In the 19 years since Li Zongyang began to learn to speak, Wang Lu has been trying to teach him to recognize numbers, distinguish between yesterday, today, tomorrow, and you, me, and him. She longs for her son to be able to communicate more with people, to be able to ask for help when he encounters difficulties, and to be able to integrate into society day by day.
▲ Li Zongyang learned to make desserts in the warm home of the streets of the Asian Games Village. Courtesy of respondents
Tearing, healing, tearing again, healing again, similar torments are repeated in many autistic families. While striving for internal self-consistency, what makes them difficult is the rejection and incomprehension of the outside world.
Xia Jing's son, Kang Rui, is 23 years old and was diagnosed with autism and a third-degree mental disability when he was more than three years old. At that time, the public's perception of autism was not as spread as it is now, and it took Xia Jing two years to understand why her son was "different" from other children.
Xia Jing still remembered that when Kang Rui was more than one year old, he still couldn't speak, so he took him to the hospital for examination. As she held her son outside the clinic waiting for the results, Kang Rui inexplicably became interested in the syringe medicine cart in front of the nurse, and her small hand kept turning the wheel under the cart. "Such a child is the most difficult to teach." The nurse beside him said suddenly.
Xia Jing's tears began to fall uncontrollably. She thought that her son might have stunted growth, but suddenly heard such a sentence from the medical staff, and all the presets collapsed in an instant.
Kang Rui was slightly older, once, because his eyes hurt, Xia Jing took him to see the ophthalmologist again. Worried that the child did not cooperate with the examination, Xia Jing explained her son's situation to the doctor in advance, but in exchange for a cold response, "In the future, such children will still be brought out less." ”
Suddenly, Xia Jing was stunned. "That's the truest reaction to autistic kids twenty years ago."
"He can be a useful person to society"
As he grew older, Kang Rui's condition became more serious. How exactly do you raise a special child? Xia Jing flipped through many books, but still couldn't find the standard answer.
Some available data mention that in autism spectrum disorder (ASD), whether it is the degree of presentation of major features such as social communication defects, abnormal communication skills, narrow interests, behavioral stereotypes, or differences in sensory sensitivity and intelligence levels, there is a continuous spectrum distribution from mild to severe, from low to high, between patients.
"The differences in children with autism are like a spectrum, and the symptoms are mild and severe." After realizing this, Xia Jing seemed to see the light in the darkness, "Children are not completely unculturable. ”
In 2004, when Kang Rui was five years old, Xia Jing sent him to a special education school for children with autism. There, from elementary school to high school, autistic children like Kang Rui can undergo rehabilitation training with the help of teachers, while learning knowledge and cultivating hobbies.
Under the continuous professional intervention, Kang Rui finally began to speak, and slowly began to read. Xia Jing's heart finally settled. She felt that the child seemed to have a crutch in his hand, and the road under her feet was clear and wide.
During the time spent with Kang Rui in class, Xia Jing gradually discovered that every parent of an autistic child had a similar mental journey - from doubt, shock, anxiety, to acceptance and calm, almost without exception.
And the more autistic children she comes into contact with, the more Xia Jing understands the cruelty of "genealogy". For example, even at a similar age, almost at the same time to receive rehabilitation training, some children still have to practice the swallowing action when drinking water, and some children can achieve basic self-care in life, and even be competent for a job. But the same thing is that no autistic family can find a shortcut in one step: "We are all crossing the river by feeling the stones." ”
In 2012, by chance, Xia Jing learned that the Beijing Jinyuyi Disabled Children's Art Rehabilitation Service Center can help children with disabilities recover through painting, vocal instrumental music, dance and basketball classes, so she enrolled her son in the institution's painting and instrumental music courses. Since then, Kangrui has begun a new routine of "school + interest class".
▲Kang Rui made dumplings with his mother at home. Courtesy of respondents
Everything seems to be slowly stabilizing, until 2018, Kang Rui successfully completed high school, Xia Jing once again fell into worry - what should be the road after that?
How to find employment for older autistic youth has always been a heavy topic. According to Zhang Junru, founder of the Golden Wings Disabled Children's Art Rehabilitation Service Center, 99% of autistic youth after graduating from high school have returned to their families. Because there is no place to go to school and nowhere to work, the knowledge and social communication skills they have previously learned will often slowly deteriorate with the passage of time, "doing nothing and living in a single living environment, which together causes their state to deteriorate, and also brings an extremely heavy burden to the family and society." ”
That spring, Xia Jing was a little impetuous. An unexpected phone call blew away the long-standing bitterness in her heart— Zhang Junru told her that a bookstore was willing to hire Kang Rui to be responsible for painting the posters of the bookstore and sorting out the books.
On the day of entry, Kang Rui, who took over the badge, smiled happily, and Xia Jing knew that her son could not really understand what work was, but she would laugh and laugh. But in Xia Jing's heart, this job is a ticket that marks Kang Rui's entry into society, "which means that he is not out of society, and he can be a person who is useful to society." ”
Early intervention and full trust
Kang Rui is not the only "lucky one". Relevant data show that in recent years, the number of new employment of disabled people in the mainland has continued to increase, even under the influence of the epidemic, in 2020, 381,000 disabled people have achieved employment, and the total number of employed people accounts for 43.25% of the disabled working population of the right age (only for licensed disabled people).
In kangrui's second year at the bookstore, Wang Haoran, who studied painting with him at the Golden Wings Disabled Children's Art Rehabilitation Service Center, also got a job that he wanted — although he was a mentally disabled third-degree autistic person, the 19-year-old boy could understand the meaning of work for himself and his mother.
When he was 6 years old, his father died of illness, and it was only because his mother Liang Jing "worked three shifts" in the pharmacy to raise him. "If I have a job and can earn money, I can lighten my mother's burden," Wang Haoran said firmly and repeatedly— though his expression must have alternated between interruptions and repetitions.
Ms. Liang said she basically didn't need to ask about her son's work. Sometimes in order to complete a painting of the company, the son will voluntarily give up the opportunity to go out on the weekend. Under the guidance of colleagues in the company, his painting skills have also improved more and more.
▲ Wang Haoran at work. Courtesy of respondents
In fact, in the group of autistic patients, Wang Haoran's recovery is relatively ideal. For example, as early as junior high school, he could go to school alone.
The first time is always the hardest. In a way, this is also a dangerous and helpless choice for a single-parent family. Liang Jing was not at ease, and repeatedly told her son to call after going to school to report that he was safe, but Wang Haoran still forgot. Because her son's mobile phone was silent, Liang Jing could only call the teachers she knew one by one until a voice told her, "Haoran is sitting safely in the classroom." ”
Since then, every time Wang Haoran goes to school, he will remember to send a WeChat message to his mother and never forget. Gradually, Liang Jing's tight string also relaxed.
What makes her even more unbelievable is that her son is still very "good" at creating surprises - he can follow the online tutorial to bake some bread or steam a drawer of buns for his mother after the night shift. "Steamed buns, not even I." Liang Jing sighed.
▲ After Liang Jing got off work, Wang Haoran showed her the bread he had just baked. Courtesy of respondents
When Wang Haoran was older, the work of preparing dinner for mother and son was basically taken over by him. In addition to repeatedly telling all kinds of safe gas and electricity needs to be known, Liang Jing basically does not have to worry, "Anyway, what he does, what I eat, gas, electrical appliances every time he is turned off very well." She even had a bold idea, "If I go out for a few days, Haoran should be able to take good care of myself." ”
In Liang Jing's view, the son's current state is the best result of the integration of early intervention and full trust, "When the child can complete some things alone, letting go may get unexpected results." Some autistic children are not particularly dependent on their parents and have a certain ability to take care of themselves, but parents are somewhat dependent on their children. ”
Because of his extraordinary obsession with trains and trains since he was a child, when he entered a special school and attended primary school, Wang Haoran often took his grandfather's newspaper and cut out the train or train pictures on it and collected it. The subway is naturally not spared, and by searching the Beijing subway map to compare and draw, he has memorized each line by heart.
This is also Wang Haoran's most inseparable hobby. Later, through the Internet, he met a group of "train fans", who would talk with everyone about the model and age of the train, and look for a point where he could photograph the train. Because he had a "map" in his head, he never got lost.
But the shadow of autism hasn't completely receded. Last winter, when Liang Jing was at work, she suddenly received a call from Wang Haoran, "Mom, this time it is over, I must trouble you." ”
It turned out that Wang Haoran went out as usual to shoot the train, but left the camera stand on the bus. When he sat down on the same bus to the terminal station, he saw that the bracket bag was at the door of the duty room, and he took it without saying a word. The staff thought he was stealing something, but his language skills could not explain clearly, and the staff finally called the police. After Some Explanation from Liang Jing, Wang Haoran was able to get back his bracket bag.
However, Liang Jing also sees a positive side. For example, she had never taught Wang Haoran, but he knew that he could take the same bus to the terminal to get things back. This also became a puzzle between mother and son, because Wang Haoran could not use words to answer his mother's confusion.
The "last mile" of return to society
More mentally and intellectually disabled people are still groping forward on the road to rehabilitation. Their families tried their best to guide and help them slowly into society.
Wang Lu hopes to create an opportunity for Li Zongyang to learn how to solve the difficulties encountered when going out. She should fully consider the various situations that her son may encounter, and let his son try to deal with each situation as much as possible.
She was exercising Li Zongyang to take the bus alone to school. At first, she would follow Li Zongyang not far behind, but now she can sit on a bus. According to her plan, after that, she needed to find a suitable person— she was familiar with it, but her son was completely unfamiliar — to follow him near him and tell him what to do when he took the wrong car, sat on a station, or dropped something.
In Wang Lu's view, as long as her son learns how to communicate with others, it means that he knows how to ask for help, and she believes that there will be people willing to help him, and such people will also increase with the progress of society.
Xia Jing has also begun to exercise her son's solo travel, teaching him to watch traffic lights; teaching him to stop for a while after running far; teaching him to find someone to ask for help when he encounters difficulties on the road.
Although many people have praised Wang Haoran's self-care and self-reliance ability, as a mother, Liang Jing is well aware that her son still has many deficiencies in language expression and emotional control. She and her son have done their best, "the next step is to wait for society to give more acceptance and tolerance to people with autism." ”
In fact, such expectations are falling into reality step by step, and families with special children no longer need to "fight alone" as they once did.
According to statistics from the China Disabled Persons' Federation, during the "13th Five-Year Plan" period, the number of rehabilitation institutions and practitioners for the disabled in the mainland continued to increase significantly. As of 2020, the number of rehabilitation institutions for the disabled in China reached 10,440, an increase of 665 over 2019, an increase of 6.80% year-on-year; the number of on-the-job personnel in China's rehabilitation institutions reached 295,000, an increase of 31,000 over 2019, an increase of 11.74%.
Choi Kwang-joon is still waiting for a "hope." The long-term rehabilitation training in the warm home helped him learn paper cutting, clay sculpture, poetry recitation and opera. There, he became friends with many people in similar situations, celebrating holidays and birthdays together.
But he often feels that it is not enough, "it is always like one foot into society, and one foot is still outside." He hopes that the nursing home in the future can also be like a warm home, with a space that can accommodate himself and other patients, equal and humane.
Choi Kwang-joon's wait may not be long. In 2021, the Ministry of Civil Affairs, the National Health Commission, and the China Disabled Persons' Federation jointly issued a document to provide a basic basis and operational norms for the national development of community rehabilitation services for mental disorders, and to establish a government procurement system for community rehabilitation services for mental disorders. As of December 2021, one-third of the country's provinces have established a community rehabilitation mechanism for mental disorders.
Wang Haoran told Liang Jing that next weekend, he also wanted to go to Beijing's Fengtai Station to photograph the station and the train, where he had been to a dozen times and still couldn't shoot enough. In that station, the high-speed rail will take the elevated, the general speed will go to the ground, the subway will go underground, and in the same space, different vehicles will sit safely on their own tracks, they anchor in the direction, and drive towards the future together.
Beijing News reporter Bo Qiyu
Edited by Li Binbin Proofreader Liu Yue