We Are Ready To See Some Children, And Drive Others Away: Why Inclusion Is Not About Ramps

Health 2023
We Are Ready To See Some Children, And Drive Others Away: Why Inclusion Is Not About Ramps
We Are Ready To See Some Children, And Drive Others Away: Why Inclusion Is Not About Ramps

Video: We Are Ready To See Some Children, And Drive Others Away: Why Inclusion Is Not About Ramps

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Video: Our fight for disability rights and why we're not done yet | Judith Heumann | TEDxMidAtlantic 2023, January
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The right to go to school

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In May, Lida Moniava became the guardian of 12-year-old boy Kolya. According to Lida, something went wrong during childbirth and the child's central nervous system suffered, which led to multiple developmental disorders. Kolya's parents abandoned him in the hospital, and he spent his whole life in a boarding school, almost always lying in bed. Kolya does not see well, does not speak, cannot walk, sit, eat or swallow, he feeds on a special mixture through a gastrostomy tube - a hole in his stomach. He has scoliosis, joint contractures, and a small skull.

Some say "vegetable" about such children - even Lida does not know for sure whether Kolya understands her speech. Others regret and are afraid to look at them. However, the chance of meeting such a child is small - unless in a clinic, in a hospital or in a church. This chance is even less in a regular general education school, although children with severe disabilities, including mental ones, have the same rights to education as healthy ones. This is spelled out in the 273rd Federal Law: "Education of students with disabilities can be organized both together with other students, and in separate classes, groups or in separate organizations carrying out educational activities."

According to the Moscow Department of Education, provided by TASS, "in accordance with the current legislation, admission can be refused only due to the lack of vacant places in the educational organization."

The department also noted that “for children with special educational needs, at the request of parents (legal representatives), in any educational organization, special learning conditions can be created, taking into account their psychophysical characteristics, individual capabilities and health status. is the conclusion of the central psychological, medical and pedagogical commission."

That is, if the central psychological, medical and pedagogical commission decides that a child with a disability or developmental disabilities can study according to a special program, his parents have the right to choose the form of education and educational institution - correctional or general education. And, if they come to a regular school, the child is obliged to choose a special individual training program, provide him with teaching aids, special technical teaching aids, provide a tutor - an assistant who will be constantly nearby during lessons and breaks, help to move around, eat, go to the toilet …

Lida chose the second option.

"I phoned about five schools in the Novoslobodskaya area, where we live, and at first everyone said very well that they were waiting for us, and as soon as the conversation came about that the child was in a wheelchair, they answered:" We will call you back. " They call back and say that they have no places or that they need to go to a neighboring school, because there it is much better than theirs, "said Lida Moniava.

Schools demanded to bring a certificate from the mental hospital and once again go through the commission, which had already written in the conclusion about the need for a special individual educational program for the child. Others advised contacting special institutions.

“Everyone said that he needed to go to a correctional school and that there was some very good school like that somewhere a couple of kilometers from the Moscow Ring Road. I need the school to be near my home, this is one of the arguments. we do not have a correctional school, "says Lida.

She filed a complaint with the Moscow Department of Education and wrote a post about the situation on her Facebook page.Within a few days, thousands of users responded to it, most of whom expressed disagreement with Lida's position.

School is not an almshouse

The main argument of opponents of mixed classes is the low effectiveness of such training.

"The school is needed to study in it. This is not a club of interests, this is a place where they give and receive information. If a child wants and can learn with the support and provision of conditions, then let him study. But if he is simply brought and taken away, and in he does not participate in the educational process in any way, then this is not education. If there is no functionality or communication, then dragging a child to a regular school and placing him in the class as a model of a person is delusional and mockery. Why? For what? To what? " - wrote in one of the comments.

"The school is not a free babysitter. Children already have enough stressful situations," they said in another.

The discussion under Lida's post is a snapshot of the views of the parent community. The main fears of both adults and children were voiced here. But what if such a child makes noise, bellows, makes some sounds during the lesson? What if he vomits or starts having an epileptic seizure? What if he dies in class?

There were also supporters of inclusive education. They talked about the fact that among healthy children there are usually those who distract, interfere in the classroom, behave badly, bully, but no one is surprised that such children come to study. They referred to the experience of countries where inclusion in schools has long been introduced:

“My daughter with epilepsy and severe mental disability is studying in a state regular school. There are no special state schools in the United States.”

"I live in Italy, in the next class of my daughter there is such a student as Kolya, an ordinary village high school, a town with a population of 3.5 thousand. In the morning, her parents bring her to the classroom a little later, when a crowd of children came in and sat down, they took her a little earlier. In the classroom, the girl just sits and listens to the teacher, during breaks the children communicate with her.The district physiotherapist came to school, told the children how to communicate with such children (by touching), taught the children to touch, massage their hands, told everything about the tracheostomy (an opening in the trachea, which is made to allow air to enter the patient's lungs, often to connect it to a ventilator - TASS note) ".

Some mothers described the difficulties their children faced during their studies in mainstream school:

"I have a child with a complex heart defect, there is a pacemaker, pulmonary hypertension, the child is very sociable. But at first at school, her children were persecuted, why did you come to school, go to the hospital, you are a robot, if you have a piece of iron, the child is very nervous, crying. We managed to prove to her that she is the best, that she is a white swan, not a gray one. We were very worried. By their very nature, children are very angry, and parents of healthy children are not ready to take them to school. You are great, what you are trying to achieve. You can say you are also a white swan in all this gray mass of life."

However, even many parents of children with disabilities spoke out about the dangers of inclusive classes, citing moral trauma, the bad influence of noise, fuss, and a large number of people around the sick child. Lida has a different opinion. She tries to lead a full-fledged ordinary life with Kolya: together they walk in parks, attend concerts, even travel, and the child feels good in society. Lida is sure that the school should also be open to all children.

“It’s frustrating that parents themselves are constantly justifying why not,” she says. Why children like Kolya should not go to school. Until people with disabilities start going out into the streets, into society, demanding their rights, no one will offer them anything. It is unlikely that someone will adapt the school for a disabled child if not a single child in a wheelchair comes there.It is unlikely that someone will send a teacher to learn how to work with non-verbal children until such children apply for educational services."

Lida emphasizes that we are not talking about the constant education of Kolya with healthy children: he will not study physics or mathematics, at this time he will study at home or at school with a teacher according to an individual schedule. He will be brought only to lessons, the program of which coincides with the program of other children, for example, to music. And he will also attend all extracurricular activities - holidays, concerts, exhibitions, excursions.

According to Moniava, a comprehensive school will give her ward more than a correctional school: “Kolya goes to a center in a hospice, where all children with disabilities, all of them are grave, but there is no noise, because these children cannot speak. will be the same. And I would like to have ordinary people around him, active children, for something to happen, these are all stimuli that can lead to the fact that he will begin to perceive the world around him more."

"Such - not such"

Attempts to divide disabled people into those who can be admitted to healthy children and who are not are an alarming signal, says Anna Bitova, chairman of the board of the Special Childhood Center for Curative Pedagogy. Many parents reason like this: if a child, for example, is paralyzed, but "everything is in order with his head," he can be admitted to the classroom with ordinary children. And if the problems are mental - then no.

“It’s not clear why other children go to school and don’t ask anyone, but these children are required to obtain permission. This is some kind of inequality, and I don’t like it. Why are we ready to see some children at school, while others are ready to drive away? in the spirit of "such - not so", it is easy to get to very bad things, "says Anna. - On the other hand, of course, the school should be ready. A school that is not ready to see such a child is probably not the best place for him, but the question arises, why is she not ready and violates the rights of children?"

The reasons for the lack of readiness, according to the vice-rector of the Moscow Psychological and Pedagogical University Svetlana Alekhina, are in a strong shortage of specialists who can work with special children.

"We have a huge staff shortage in mass schools of defectologists, speech therapists, tutors who know how to teach and accompany such children. Staff shortage is not even a problem of staff unavailability, but a problem of lack of staff. Because it is difficult to take and retrain a teacher who has worked for 30 years. In a regular class, people should come to schools, initially tailored to work with special children. They should help teachers draw up a lesson program, instruct, explain the characteristics of a particular child, attend lessons, take on some of the tasks. the teacher will never cope with the tasks of inclusion."

According to Svetlana Alekhina, in September 2019, the Ministry of Education issued an order on the psychological and pedagogical council of an educational organization. According to the document, the council should appear in every school.

"This is the team of multidisciplinary specialists to which correctional teachers, defectologists, psychologists, tutors come, who discuss a specific student and his specific situation: difficulties, adaptation of programs, work with teachers, attract parents so that they understand how their child is adapting. and learns ", - explains Svetlana.

According to the Ministry of Education, 750,000 children with disabilities are enrolled in the Russian school system. More than 55% of them study inclusively, the remaining 45% - in correctional classes and schools. The agency also told TASS in a written commentary that the country is retraining teachers to work with such students:

"In order to ensure the continuous professional growth of teachers and specialists working with children with disabilities and disabilities, at the expense of the state program" Accessible Environment ", training events are held annually for managers and teachers on working with children with disabilities, covering more than 10 thousands of participants every year, and similar programs are held in the regions on a regular basis.

Training and graduation in the direction of "special defectological education" in pedagogical universities is growing. In 2019, there were 9135 graduates. Projected graduation in 2020 is expected at 9,438."

According to the data of the Moscow Department of Education, provided by TASS, in 2019 "more than 2,900 teachers underwent advanced training in the implementation of adapted programs. To master new methods of teaching children with disabilities and the organization of inclusive education, teachers more often choose advanced training courses lasting 72 hours. For teachers. passing the courses is free, because the training is paid for by the educational organization on the dpomos.ru portal ".

The Department of Education also reported that, according to its data, there is no shortage of personnel in Moscow.

"Educational organizations of the city of Moscow are fully staffed with highly qualified specialists, including in the field of inclusive education, have a modern material and technical base, which allows them to create special learning conditions for students with special educational needs.

However, says Svetlana Alekhina, one cannot judge the problems in the regions by the situation in Moscow.

“More specialists are being trained in the capital, this is to be expected, here are the main pedagogical universities, the best schools,” says Svetlana Alekhina. “And even in Moscow we are faced with situations when a child with a disability is not ready to be admitted to school. teachers, and there are more than 4 million teachers in Russia. So judge whether this is a lot or a little."

The lack of qualified specialists and the accumulated experience of working in inclusive classrooms leads to conflicts between special children and other students, their parents and teachers.

“There are a lot of disagreements, contradictions, conflicts in inclusive practice, this is not surprising for us,” says Svetlana Alekhina. “In a negative scenario, this is resolved as a confrontation on the part of the school, which is obliged to accept and implement the recommendations of the commission, and to teach this child, the child's parents. a disabled person who wants the child to go to a mainstream school; and the parents of other children who do not want this child to go to class."

Responsibility for resolving conflict situations in the classroom lies with teachers and school leaders. It is they who should establish communication, cooperation with parents, meet with children and answer their questions, explain why special children come to classes, Svetlana believes.

"There are scientific domestic and international developments, there is domestic and foreign practice that has learned how to remove these conflicts in real situations. To build mutual understanding, trust between children and parents - all this is the school's strategy. If the school has accumulated some experience of inclusive culture, then these conflicts gradually go away, there are less and less of them."

Inclusion for tick

Svetalana Bazarova is the mother of a child with a disability who has no mental impairments, but she also faced the reluctance of secondary schools to accept him. Her daughter Jennette has "crystal disease" - osteogenesis imperfecta. The girl's bones are very fragile, she cannot stand, walk, fully extend her arms and legs. When Svetlana tried to get her child to school ten years ago, she heard the same thing everywhere: "We don't have conditions for wheelchair users."Many advised her to go to a correctional school because “she would be better there,” although Jennette did an excellent job with the full-fledged school curriculum.

“It was 2013. I was on the phone, monitored schools all summer, we were ready to move to any area, closer to the school that suits us, but more than ten refused,” Svetlana recalls. “Even the environment that was not accessible was important to me., but an accessible head of the school administration. Barrier-free. An elevator, a lift is not everything, because often the administration does not want to see a disabled person at their school."

Jennette took over the Moscow school 548 "Tsaritsyno", although at that moment there were no ramps or lifts in it. For the first few months of the school year, my mother accompanied her daughter, then she was given a tutor who helped her move around during recess. High school students carried a stroller with a girl from floor to floor in their arms, but soon the director obtained funding, and the necessary equipment was installed at the school.

“Our director, Efim Lazarevich Rachevsky, organized everything very quickly,” says Svetlana Bazarova. “He did not look at me like a crazy mother who wants something extraordinary, he was always in touch with me, even when they put up lifts, expanded the entrances to toilets, they called me and my daughter and asked: “Tell me, how will it be convenient for you?” Not for show, but for the convenience of a particular child. We installed two electric lifts. We tried to minimize my load. There was excellent work with children, employees of the organization came to school "Perspective" and talked with children about how to communicate and behave correctly with people with disabilities. My daughter had a very friendly class, and this is the merit of the teachers."

In tenth grade, Jennette studied exchange in Germany. Alone, without mom. She lived in a hostel, she moved around Berlin. But when she returned home and began to go to college, she again faced discrimination.

“After she had passed the exams, a woman from the commission rushed into the room while submitting documents:“How are you going to study?”I replied:“I mean? Like everyone else! "- Svetlana recalls. - Jennet was indignant, said:" Why do you think that you have to bother with me, I lived in Germany alone for a year. "But they answered:" Our institute is barrier-free, accessible, but we are not ready … If the commission comes, everything is perfect, but the teaching staff is not ready. "You see, they were not ready for the fact that they will have a wheelchair user."

Jennette wrote a post on her Facebook page, followed by an apology from the press service of the institute, the girl was accepted, and on September 1 she began her studies.

“Then we looked for information about this woman on the Internet, - says Svetlana Bazarova. - We found that in 2019 she was undergoing advanced training in inclusive education. What is the difference between Europe and Russia? most often served in the wrong way."

If they don't want to, let them go

Manual mode, publicity, posts on social networks and public awareness are still the most effective way to solve the problems faced by parents of children with disabilities. After Lida Moniava complained to the Moscow Department of Education, she was contacted by the management of the school, which is part of the Resource School project.

“The intonation changed, they began to discuss with me which program would be convenient for Kolya and at what hours it would be convenient to attend school,” says Lida.

An individual schedule was drawn up for the child - while he will attend school twice a week and meet with classmates in music, labor, game therapy, the living world. And study alternative communication individually.

When asked about the possible negative reaction of classmates and their parents to the arrival of a severely disabled person in the classroom, Lida replies that in this situation she will act not only as Kolya's guardian, but also as an employee of the children's hospice.

“My professional task is to change the attitude of society towards children with severe disabilities.I understand that no one is obliged to meet Kolya well, the professional task of the hospice is to give a lecture in the class to which Kolya will go, about his illness, about how to interact with him, about the same convulsions - how to react to them. Conduct a conversation with teachers, with parents. The hospice is ready to invest in work with the school in order to build communication between children, parents, teachers and Kolya so that it is comfortable for everyone. If someone does not want to be in the same class with him, let him leave, because Kolya has exactly the same right to education as any other child. No one has the right to drive Kolya away, they have the legal right to leave on their own."

Many critics of this decision appeal to the rights and moral suffering of healthy children: it turns out that a child with a disability has the right to choose whom to study with, but a healthy one does not. But Lida is convinced that trying to protect herself from people with disabilities is wrong. You can see a seriously ill person everywhere. A seizure can happen to a passer-by on the street or to a passenger in a subway car. The child at the next table in the cafe may vomit. A passenger in an adjacent seat of an airplane could die when flying on vacation.

"Children are much easier to treat the disability of another person than adults, if you explain to them what is happening. Ignorance is frightening," says Lida. She believes that coeducation can give a lot not only to a child with a disability, but also to healthy children.

"Not only are we useful for them, but they are also useful for us. Interaction with a completely helpless and defenseless child gives those who are near, a lot of love, meaning and warmth."

The only question is whether healthy people will be able to feel this benefit and accept a life in which there are other people.

Karina Saltykova, Gabriela Chalabova

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