Why normalization is needed

A small area in the courtyard of a country hotel. Children dance and play folk games: “Loaf-loaf, choose whomever you want”, “Boyars, and we have come to you” … They came to the Velegozh-Park camp, because all children sometimes go to the camp. We got up in the morning, washed, dressed and went for a walk, because all children do this. Now they are playing, then they will go to cook dinner. After lunch there will be rest, a walk, classes, amateur theater, dinner and sleep. Then the holidays will end, parents will come for them, the children will return home and go to their small school at the Center «Communication Space». As everybody.

The only difference is that these are children with severe mental and motor disabilities. All have mental retardation or developmental delay. Almost no one speaks. Many don’t walk well. Some people have occasional epileptic seizures. But the camp at the same time is ordinary.

let them live

A similar camp could be arranged for children with any other disabilities, but there are almost no examples of this. A camp for children with cerebral palsy, for example, would offer a series of harsh medical procedures from morning to evening, as parents want to get the kids on their feet no matter what. For children with cerebral palsy, this would be an extreme quest, not a children’s vacation. The practice of normalization begins in Russia with children with mental disabilities, because everyone around them accepted their incurability and let them live.

In order for such a child to get up, wash and dress, you need to help him, as they help a baby. Therefore, in the Space of Communication center there is one teacher per child. In order for such a child to have breakfast, it is necessary to teach him for a long time to sit at the table on a chair and eat with a spoon from a plate. In the Space of Communication center they teach exactly this, and not algebra and geometry.

They will cook dinner, cut salad into uneven pieces, because any socialization is easiest to start with food. Very often they cut the salad with support, that is, the teacher supports their hand by the wrist, elbow or shoulder, depending on how much the child controls the hands. A grandmother broken by a stroke would also probably be happy with such support to cut a salad, because cooking for her grandchildren was the main way for her self-realization before the stroke. But it is customary to put those who have had a stroke in the bedroom, instead of “normalizing” as much as possible and with support, involving their families in life.

So it’s better for everyone

Meanwhile, everyday activity is more effective than medical methods of rehabilitation. Severely handicapped children, of course, will never go to school, but the skills and abilities acquired over several years are enough for them to live with their families, have friends, go out of the house, even buy groceries in the store. Some of them have learned, and some may still learn, non-verbal communication — to show pictures in an album specially prepared by teachers to report simple things about themselves: “I’m tired”, “I’m hungry”, “I’m having fun”, “I’m sad” , “yes”, “no”, “I want buckwheat, not oatmeal” … If they hadn’t been dealt with, they would have been lying, turning their backs to the wall, running headlong into nowhere, destroying furniture around them, falling into hysterics at the sight of a stranger. And so they have a family, friends, activities, leisure … Probably, they do not understand that they live a more or less ordinary life. Most of them have the intelligence of a two-year-old and therefore understand little at all. But that doesn’t mean they don’t feel anything. Could feel loneliness, fear, despair. And they feel love, joy, boredom, sadness, happiness — different feelings. They feel, in a word, that everything is in order.

What do we have to guess

Disability arises not only because something has broken in the body, but also because the society around is not ready to accept a special person. At night, the sighted has an advantage over the blind only because there are lighting devices. If they were not there, but there would be a guiding relief on the floor, the blind would have advantages. The diagnosis of «mental retardation» could not have been given to a village shepherd three hundred years ago — yes, he was illiterate, just like everyone else. It is logical to assume that such conditions can be created under which people with disabilities would live among ordinary people. So far, we have only guessed that wheelchair users need ramps, and the blind need squeaking traffic lights. And we have yet to guess that it is possible to take into account the needs of a person with a disability of any kind and any severity.

A child with special needs can be considered “normalized” if at least one of the parents works, and preferably both (in all ordinary children this happens more often). If a child has housing, if he can use transport, goes to school, has leisure, friends, maintains contacts with relatives … In healthy children, all this develops by itself. A child with severe disabilities can also develop, but with qualified support from specialists.

Support the family, educate the community

The family of a child with disabilities is always traumatized by the very fact of his birth. Mom suffers for the child, but does not rejoice at him. Experiencing guilt, not love. Therefore, work with families is so necessary: ​​parent groups, individual conversations with a psychologist, “four-step protocol for working with guilt”, “five-step protocol for working with trauma” … Or just come to your child’s class and play with him and his friends in «Karavay-karavay». Or — the age-old dream of the mother of a sick child — to take the baby to school, and go and finally get a manicure herself.

Until now, it is generally accepted in our country that it is too expensive to assign a teacher or assistant to each person with a severe disability. But in fact, keeping a child with mental disabilities in a boarding school is much more expensive than if he lived at home and regularly visited a center that supports his family. In no state boarding school, child care can cost only 160 thousand rubles a year, as in the «Communication Space». But we, as a society, have not yet seen the benefits of normalization, have not entered into a dialogue with the state on this topic. But instead of closed boarding schools, life in isolation, another life is possible for people with disabilities. Not quite the same as everyone else, but quite decent and human. Which is called the dry word «normalized».

¹ In Mentally retarded in Sweden, Swedish Institute, 1974.

^2. An example from Nora Grouse’s book Everyone Here Spoke Sign Language: Hereditary Deafness on Martha’s Vineyard, Harvard University Press, 1985.