Stigma affects many people with developmental disabilities or serious illnesses. But it is especially difficult for children to endure the pressure of society. Aniya Tamaeva, mother of an eight-year-old girl with motor impairment and epilepsy, explains why it is so important to pay attention to the child himself, and not focus on his diagnosis.
For some reason, people around me are terribly interested in the diagnosis of my daughter. Known and unfamiliar, far and near. Taxi drivers, neighbors, people in the yard, even Facebook friends. “We are not out of curiosity,” they say, “but still: what is the child’s diagnosis?” It’s funny that none of them is a doctor, but for some reason the same scheme works for doctors.
If the diagnosis is unknown, everything is clear, you need to look for it. Although, for some reason, doctors mostly spend their time and energy on denouncing parents who did not achieve a diagnosis earlier. If it is known, then everything is even easier. There is a diagnosis. Only the person behind him seems to be gone.
“Put the child in a chair,” a pretty young woman, a well-known pediatrician, orders me. We are not in a hurry, we have paid for a large hourly appointment, we have collected all the examinations.
And now a doctor has to examine an eight-year-old child, but does not want to contact him directly
At the same time, our daughter is very adult-oriented, but she feels uncomfortable in the company of doctors: a difficult life story is affecting her. However, if you try to contact her directly, negotiate, spend two minutes out of sixty to establish contact, she will try to do everything the doctor asks.
We are talking to the doctor about this with the father of the child. “I said put the baby in! The doctor raises his voice. Raise your hand to her! Turn her around! Tell her to take the item!”
Once again: the child is eight years old. She is conscious, able to speak, perfectly understands the speech addressed to her, wears beautiful clothes, loves strawberries and builds structures from Lego. She taught herself to roller skate. She treats the whole family with fruit salad. She is a little girl, with all the trappings of a girl’s life.
But her individual traits instantly lose all meaning, one has only to leave the circle of loved ones. Because there are several words written in her medical record that deprive her of the right to be treated as a person.
However, we will omit communication with doctors. In the end, in the modern medical model, only the disease really matters, without any connection with the person himself and his quality of life.
And now the task of the doctor is solved. There is a diagnosis. Can’t be cured. But you can’t die from it either. You have to live with it somehow.
At the stage before school, it turns out that the path of your child and the path of healthy children diverge completely. Order of the special commission: a special school, closed from others. With the best of intentions. After all, if you collect all the children with the same diagnosis, then there will be specialists who can work with this! But the child’s world will then collapse to a few people who have exactly the same problems as him.
In an ordinary school, one reads slowly, but sings well. And the other is able to stand on his head. And the third knows five languages. Not so in special education. If you can’t see, then all your classmates can’t see either. If you can’t walk, then others can’t either. And if your ability to communicate is impaired, then the rest of them are also impaired. I don’t want to communicate, socialize, here are all the conditions! There are ten people locked up with each other, none of whom can communicate. An escheat, artificial world.
By the time school starts, parents of special children have usually tried everything. We spent all our money and all our energy. At the same time, almost every conversation with others looks like a collection of unsolicited advice or an interrogation:
- “Why is she like this?”
- “Yes, you just have to try …” (substitute the appropriate one)
- “But the second cousin of the brother of the husband of the employee of my great-grandmother also had this, and he was cured”
- “You just don’t know how to educate!”
- “This is now ecology, this is all for sins” (underline as necessary)
- “They gave birth to freaks here and go with them”
And these conversations never end. There is always a magic pill that you just have to try, a doctor who will seem, a way with which you can try a little more.
And it can be quite difficult to explain that if you have been taking care of your child’s health for seven years, then you probably know a little more about his capabilities than the interlocutor who last saw the children about 30 years ago.
In general, and it is easy to survive, there is only one small detail. Behind all this, a living child is lost again. He is not interested in himself. No one tries to build contact with him from his adult strong position. Why talk to him at all, does he understand at least something if he is “like that”? Therefore, we are again talking only about his illness.
After the stage of bargaining, you, the parent, come to understand the simple facts. Do you have a child. You live with this child; with who he is. And love him the way he is. And you help as much as you can, with the thought of how he can live when you are gone.
This summer, my children and I ended up at the integrative campsite of the Center for Curative Pedagogics. Integrative is one where both children with special needs and children without special needs can come with their parents. At the entrance, we were not required to present certificates and share diagnoses, but all the teachers were well aware of all the special needs of special children, because they also worked with our children during the school year. No medical tasks were set, only pedagogical ones.
The main goal was to spend time together as best as possible, because spending time well is extremely beneficial not only for special children, but in general for everyone. In total there were several dozen children, and it was necessary to form detachments. And here, lo and behold, the children were united not on the basis of the presence of an illness, but on the basis of interests and opportunities, for those things that they could do together.
It turned out that in this format there is an opportunity to do a common thing and have fun.
It becomes important not just to do something faster than others, to solve more problems or to jump on one leg for the longest time (convenient measurable parameters), but to learn to hear others and yourself better.
When there is a child in the group whose characteristics you need to listen to, it becomes obvious that you really need to listen to all children. A safe accessible space turns out to be such for everyone, and in it it becomes more important not to defeat competitors, but to agree with them and learn how to interact.
This is the model of the world that will win in the future. One in which people with special needs will be the most important heroes. Because when a society hears those who need help, when it is ready to turn to them, it is good for everyone. Each of us may one day be in the role of the sick or weak, and then society will turn to us. And we will all live with dignity and comfort.
The material was prepared with the support of the Center for Curative Pedagogics .