One day six years ago, four parents approached Chen defeng and expressed their urgent need to set up an organization for parents of people with mental disabilities. At that time, Chen Defeng was working in a local service agency for the elderly with mental disabilities in Lanzhou, doing a good job and receiving a satisfactory salary.
Four parents approached her, hoping that she could assist and accompany them to create a parental self-help platform spontaneously, autonomously and consciously established by parents of mentally handicapped people.
April 2 is World Autism Day, and this year's theme in China is "Building a Social Security Mechanism to Promote the High-quality Development of Service Institutions". What motivates these parents to start a parent organization to create a career-wide support system for their mentally handicapped children?
A parent-child activity organized by parents of people with intellectual disabilities in Lanzhou.
Desperate, they decided to start their own parent organization
The children of these parents have different degrees of mental disorders, the youngest is 7 years old, the oldest is 16 years old, but they all stay in the rehabilitation special education service for the mentally disabled in the younger age group.
At that time, several parents were worried about where their children's near future should go. Several parents were distressed and helpless, and their faces were full of sorrow all day. There are not many institutions like Lanzhou, and what if the next institution cannot be satisfactory? As children grow older, where else can they go? Is there no place for their children in the world?
Soon, some parents went to the south for business because of their work, and by the way, they visited a well-known local organization of parents of mentally handicapped people who had been established for 30 years, and heard many unheard of advanced concepts, such as integrated education, vocational education, supportive employment, and community-based care.
This made several parents realize, "It turns out that my children can also go to school, and when they grow up, they can also go out to work." "In the past cognition and experience, children obediently sat at home, don't bump and touch, thank God, it is impossible to go to school and play like ordinary children." Job? Even more dare not think, many children with mental disabilities just sit there day after day, year after year in special education institutions, stringing beads.
These ideas suddenly opened their horizons. A new idea is that since mentally handicapped children in other regions can go to school and even get a decent job, why can't local mentally handicapped children? They also wanted to create an agency of their own. They hit it off, and first thought of Chen Defeng, who had experience, ideas, and understanding the pain of parents. But Chen Defeng, who has many years of experience in the operation of various organizations, poured cold water on them.
Chen Defeng and the parents seriously discussed the vision and mission of the parents' organization, and rationally analyzed the risks of this matter: the need for a large amount of start-up funds and a steady stream of financial supplies; the need for the founders and parents to devote themselves to the parents, and these parents have their own work and family to take care of; need to have a strong heart that can withstand doubts and grievances; need to be prepared for poor management; need to endure the loneliness that may not be able to achieve results for several years...
But several parents were not deterred. It wasn't a hot idea in their heads, it was something they were determined to do for the rest of their lives. In this way, in November 2015, lanzhou de caring for parents of intellectually disabled people was established, and Chen Defeng served as the director general. It has reached its seventh year.
Now, the institution serves more than 300 people with mental disabilities and their families, and is a solid backing for them. The biggest consensus among parents is to use virtue and fraternity to promote and improve the whole life support system for people with mental disabilities.
Sitting on the windowsill looking out the window at the autistic child.
Children who are hidden
In the process of promoting community accessibility, Chen Defeng feels that the most difficult thing is to "push" out mentally handicapped people and their parents. Because of the "particularity" of children, parents are very sensitive and worried about the abnormal vision of the outside world, and it is not an easy task to knock on the door of the heart of people with mental disabilities and parents. Most parents have the subconscious idea of "hiding" his child when he is first diagnosed and not letting the people around him know.
Cai Yan can understand this psychology very well. After Ojie was diagnosed, she resigned, except for the head of the department, no colleague knew the reason why she did not quit, and the relatives, friends and classmates around her did not know what was wrong with Ojie.
But as the child grows up day by day, he can't "hide" and can't "hide" anymore.
In the struggle of thought again and again, Cai Yan gradually realized that "hiding" is not a long-term solution, she must make a transformation, she must accept the reality, accept the child's current situation. So she began to accept Ojie and took the initiative to introduce Ojie to the people around her.
But not everyone can accept it. Once she tried to take Ojie to the cinema to watch a movie, and during the movie, Ojie suddenly clapped her hands emotionally, and she quickly stopped it and whispered to the surroundings: "I'm sorry sorry, my son has autism, he can't control himself, he didn't mean it." But I still heard a very harsh voice: "If you have a disability, you will take it home, why bring it out to harass us!" ”
This kind of thing, almost every family has experienced. When children "can't hide", many people hide themselves and their children together. Some people have not gone downstairs for more than ten years, and some families have lived in the community for more than ten years, but neighbors rarely see them. The staff came to the door to persuade them to come out and help each other with other families with disabilities, and they showed a look of indifference.
But in fact, this is just a thick protective wall they have erected for themselves and their children. Without attention and understanding for a long time, they are accustomed to suffering in silence, and they are also accustomed to closing the door of their hearts, like a bird of fright, vigilantly looking at the people outside the door. Only by giving them more understanding and respect, patience and support can we help them build confidence in the outside world and the courage to go out of the house.
"We don't have to pay a lot, just treat them like ordinary neighbors around you, strangers passing by on the road." Chen Defeng gave some small suggestions: allow your child to be classmates with him and go home with him after school; if he goes to your store to buy things, teach him more patiently and guide him; meet him and his parents in the community, just like meeting other neighbors, greet him; if you see him emotionally excited, shouting, don't be an outlier to watch the hilarity, give parents what they can help, and give them an understanding and respect like ordinary people.
All people are born equal, even if they are broken, they deserve our respect. Supporting and accompanying people with mental disabilities to accept their imperfect selves is also helping us to examine and accept our imperfections – each of us has large and small "defects".
Relationships outside of parents
While self-acceptance and change are accompanied by how to support people with mental disabilities at the community level, it is also critical. In fact, returning to the community and integrating into the community can allow the families of people with mental disabilities to return and integrate into a stable real life.
Many times, people with mental disabilities face very limited choices: either staying at home every day and needing someone to look after them all the time, with many parents having to quit their jobs, or constantly moving between rehabilitation, care facilities and special schools. Moreover, in special institutions, there is also a departure from the idea that parents want their children to integrate with ordinary people.
Chen Defeng feels that to promote the whole career support system, we must first start from the community where the families of mentally handicapped people live, which is the closest unit to them and the closest to life. Support them in a community setting based on the concept of social integration and normalization, with a focus on helping them to develop with the community. Another reason to serve in a community-based scenario is the long-term nature of the service. Because for people with mental disabilities and their families, the formation of problems and needs is the result of long-term accumulation, it is difficult to completely solve them with a short period of professional services, and it is necessary to continuously promote the common progress of people and community environments.
When trying to build such a support system, they also received a lot of support from the outside world. In June 2019, Waterdrop Charity and Shenzhen One Foundation Charity Foundation jointly launched the "Family Support Program for People with Mental Disabilities", calling on the society to pay attention to groups with mental disabilities and their caregivers, pay attention to the difficulties they face in daily life and social participation, improve the support environment from family to society, and then improve the well-being and social integration of people with mental disabilities and their families. With the support of the "Family Support Program for People with Mental Disabilities", lanzhou xingli social work service center joined the de'ai experiment.
In order to solve the problem of social integration, Deai united with the Happiness Li Social Work Service Center and the Caojia hall community to build a community support network for the disabled and implement the "community accessibility" action in different local communities. That is, to empower the disabled and their relatives, improve the professional skills of community social organizations to care for the disabled, make anti-loss cards for the disabled, help them install barrier-free equipment in their homes, help the community build a barrier-free environment, and create an atmosphere of equality for the disabled in the community.
At the same time, the community support network has built a three-level support system around the lives of people with disabilities. The first level is to build a local service network by mobilizing family, friends, neighbors or volunteers within the community to care for and serve people with disabilities. The second level is both a mutual aid network for people with disabilities, a mutual aid group for caregivers, or a mutual aid network for street community workers. The third level is composed of residents' committees, together with the neighborhood system, public security police stations and government agencies, subdistrict offices, community centers or social service agencies, and jurisdictional units, to establish hotlines or emergency support service networks and strive to provide timely help and support services.
Cai Yan, a parent of De'ai, lives in the Caojiating community, and she obviously feels that the community is more humane than before. Her son, Ojay, is moderately severely autistic. Ojie has a stereotype — he likes to read the words on the pill box, and the community pharmacy is a place he likes to go to. In the past, the store manager saw him walking around the store, picked up and put down the medicines, thinking that he had deliberately come to make trouble and would scold him to go out, but now when he saw him, he would greet him warmly: "Ojie, where are you going today?" "Sometimes, Ojie runs downstairs fast, and Cai Yan can't keep up. When the uncles and aunts in the community, the shopkeepers, and the security guards see Ojie, they will keep him and wait for his mother to find him.
There is a special couple in the community who are dependent on each other, the wife does not have any hearing and is accompanied by mental disorders, the children are not around, and the friends and neighbors do not interact. When the wife suffered a mental disorder, she tore the couple's wedding photos to pieces, and after waking up, she blamed herself endlessly, and her mental state was even worse. After De'ai understood the situation, he specially organized a photographer to take a wedding photo for the old couple, and the aunt, who has always been silent, finally showed a happy smile that had been missing for a long time. The old couple changed their previous closed doors and often participated in the activities of the community disability support network.
More critically, people with mental disabilities and other disabilities in the community finally stop hiding behind the door all day, they can come out of their small rooms, look at the community that they have lived for many years but rarely know, have interpersonal relationships other than their parents, and begin to gain their own freedom.
On April 2, World Autism Awareness Day, one fund ocean paradise plan for the 11th consecutive year launched the "one fund blue action" to focus on autistic children large-scale advocacy activities, hoping that every loving you, together with autistic children and parents, happy to feel this spring.
Source: One Foundation