Feeling like an outcast: a disabled girl in Sochi was not invited to her own graduation

The holiday was ruined

“The hundred-point results continue to replenish the treasury of achievements in Sochi,” the local public happily reported, listing those of whom the Black Sea resort city is proud.

Yana Timoshenko was among the named honors students.

Alas, on June 25, the graduation ball “New History” was held in the Festivalny concert hall, where the head of the city of Sochi rewarded students who passed the exam with “excellent”, but Yana was not even invited there. “Before that, I was not called to the last call, to present the certificate and receive the school album. I believe that this is discrimination against people with disabilities,” the girl is worried.

“Yana and her parents are sure that this is due to disability. They didn’t want to share the joy of graduating from school and starting a new, great adult life with her, ”Olga Germanenko, the mother of a special child, wrote on her page.

It would seem that against the backdrop of all the troubles that have recently befallen our lives, the suffering and tears of one young girl are just small salty drops.

But the ocean is made up of such drops.

Irina sends me a photo of her daughter sleeping. Irina herself guards nearby. You never know, suddenly something goes wrong and you will need to urgently come to the rescue. Heavy, exhausting slumber, not a full sleep. It is clear that the resources of the whole family are at zero. Physical. Moral.

Shot in one gate

spinal amyotrophy. The so-called SMA. As they say, the most common among rare diseases. About 150-170 people are born in Russia every year who are diagnosed with it. Most with severe disease do not survive to adulthood.

For 2021, according to Deputy Prime Minister Tatyana Golikova, 890 children with spinal muscular atrophy were known, “466 are receiving treatment.” The intellect of such children does not suffer, but, unfortunately, the body is completely paralyzed.

The Timoshenko family was not lucky. Their eldest daughter Violetta died of the same diagnosis in 2008. She was 13.

Violetta wanted to become a journalist. Wrote poems for the school newspaper. I dreamed of seeing the Olympics in Sochi, but did not live to see it.

“When Violetta became very ill, she told me that she would like to write a book about how difficult it is to be an invalid. Imagine, she thanked me and my husband that we didn’t send her to an orphanage, she asked me to take care of Yana just as we took care of her.

It happens that the projectile hits the same family twice.

At one year, the youngest daughter began a gradual regression of motor function. At two she could still sit. Irina sends me a photo in which tiny Yana poses in front of the Christmas tree.

In 2005, the baby was diagnosed with SMA – an autosomal recessive type of inheritance. That is, Yana, like Violetta, inherited her genetic disease from both parents.

Yana has a more severe form. But she is already 19. Medicine has come a long way in recent years. There were supportive drugs, the latest techniques, research. The most expensive drug in the world, which costs $ 2 million, was invented just for SMA.

But therapy should begin in infancy, and, alas, the drug does not give a complete cure, although it replaces the “broken” gene. In general, it is believed that every 50th person in the world is a carrier of a broken gene. But in order for the disease to manifest itself, many factors must converge.

Radical therapy still does not exist. And you have to live somehow.

To raise a daughter, to give her a full-fledged education, so that in the future she, in spite of everything, will be able to provide for herself – this is all that a mother dreams of.

They were sure of a red certificate and a gold medal. For the first nine years of study, not a single “four” in the report card and only commendable sheets of graduation.

After the ninth grade, we went to college, but it was difficult with distance learning, and we decided to return to the tenth grade, to a new school.

“Of course, they really want to push these children out of school as soon as possible. Needless to say, this is a problem for teachers. We have to go home every day, explain the material, arrange test. Although for such students and pay extra. And now, when distance self-education has appeared, it is easier to shift all these questions to the parents, ”says Irina.

She recalls that even in the 2000s, things were different with Violetta.

“I remember with what love and how carefully we were treated. There was no talk of any remote self-education. Of course, the human factor also plays a role. People are now more indifferent.”

Irina sends me Yana’s confession, stuffed with one finger of her left hand – with its help she controls the mouse.

It’s about bullying and loneliness. A lot is said about helping a child with disabilities, but in reality this person is invisible to everyone.

“The most important thing is the lack of acceptance of me. Outcast feeling. I felt complete indifference, I was not invited to school events, the first and last calls. In the 9th grade, I went to the line on September 1, but classmates and teachers simply did not notice me. I spent the whole solemn holiday separately.

“I remember my daughter was crying: “Mom, why is that? I just wanted to be asked how I spent my summer, ”the mother says bitterly. He says that classmates did not come to visit. Although they called for holidays, birthdays. But the newcomer was little known, and the teachers, according to Irina, were not eager to unite the class around a student with disabilities.

“They offered to conduct a psychological test in the classroom: why no one loves Yana Timoshenko. I thought it was not normal. Then, in a school chat, someone wrote that the “fives” were given to the daughter because she had health problems. It was very embarrassing and unfair.”

According to the parents, they no longer had the strength to fight the system. We decided to pay for tutors, because we understood that without individual lessons the child would not pass the exams. “The school gave one teacher in almost all subjects. I beat her every time she came to our house with a fight.

Irina sends correspondence with the teacher. As proof that she’s telling the truth. The teacher constantly finds excuses to cancel classes. That feels bad. That goes to the clinic. Then came the New Year holidays.

Then silence until January 11th. “I’m sorry I disappeared. My phone is broken. I could not restore contacts, I fell ill again. I’ll be there tomorrow around 2-3. I’ll write before I leave school.”

January 12, 2021. “We have a check. Unfortunately, I won’t be able to get out today. The prosecutor’s office won’t leave us alone. Some parent wrote a complaint “…

Passed exams with a temperature of 38

“Yana was waiting, preparing. Twice a month face-to-face lessons – is that normal? I wonder how the salary was paid for these lessons? How about for the whole month? I understand everything, and the workload of teachers too, but, after all, they do not do it for free. After all, for people like my daughter, time is allocated by the curriculum and the budget. ”

At the first final exam, it was Russian, Yana caught an acute viral infection. Someone came sick. Therefore, in early June, she passed the second mathematics with a temperature of 38.

And then they simply forgot about Yana Timoshenko.

“We were not even warned about when the school graduation would take place, that excellent students would be honored in the city. Now they say that they thought that Yana was still sick, and therefore did not report – but a month has passed and she has not even received a call to find out how she feels.

Irina herself went for school documents. “To what horror I came when I saw that there was no red certificate. But we really counted on him when we entered. They gave us the blue one, and there are six “fours” in it. I was told that for the tenth grade, Yana had two “triples” in six months, as it turned out, in chemistry and physics. And for them for the 11th grade – “five”. Therefore, the arithmetic mean score is “good”. How can this be? I didn’t know anything about it. Daughter too. We spent the whole year trying to provide a username and password from the school magazine in order to find out our grades. They said everything was fine. Where are the works on the basis of which Yana was allegedly given low marks in the report card? Yana writes everything electronically, which means they should have been preserved. We don’t have them. If they are in the school, then we need to find out who wrote them,” Irina Tymoshenko is perplexed.

Irina suggests that the teachers were afraid that, for health reasons, Yana would not pass her graduation, so at first they were persuaded to agree to a certificate instead of a full-fledged certificate, they could “play it safe”, put her triples for the 10th grade, so that, if anything, no one there were no questions.

No one could have imagined that the girl would pass both exams with the highest score. And that there will be only seven such eleventh-graders in Sochi.

And that this whole story, together with the non-invitation to the solemn presentation of certificates and honoring excellent students, will come to the surface, will be discussed in social networks, will reach the prosecutor’s office and the Ministry of Education of the Krasnodar Territory.

According to MK, the verification period has been extended until August 22.

“We are a burden to everyone”

“My daughter no longer trusts people. She is very worried. I believe that her strong-willed core will endure. But that’s not possible!” Irina exclaims.

Yana herself wrote in a confession: “I felt that we were a burden on society. It is believed that we cannot be the best. Only the support of my parents and faith give me strength. Mom says that many more difficulties will be on my way, but you should never despair and give up. Need to live”.

We got through to Alexandra Ivanovna Gross, a teacher at school No. 49 in Sochi, she was the one who worked with the girl. Now the teacher is abroad.

Alexandra Ivanovna confirmed that from the 10th grade, Yana studied at their general educational institution according to an adapted general educational program. The teacher says that the child was visited regularly at home.

“In the subjects that I taught, Yana had “five”.

Regarding the fact that the classes were held irregularly, it was at the request of the mother herself, the teacher says, since the coronavirus infection was in full swing and she was very worried about Yana. The parent was aware of the “troikas”, and the teacher does not understand why they now say that they did not know anything.

Regarding the invitation to the last bell and graduation, the teacher denies that there was no invitation:

“I personally told the dates and invited to come to both events. The presentation was on Saturday, the citywide graduation on the same day, in the evening. But my mother said that Yana did not feel well.

… In fact, the level of development of the state is not only about the economy, not only about square kilometers of territory and resources for sale, it is about the attitude towards its people, towards children, the elderly, the disabled.

Is inclusion really an illusion? Soothing, which the society regales itself with, pretending to be kind, understanding, merciful. But who are we deceiving and why? Only themselves, who one day will also become old, sick and useless.

Elena KUZMINA, social lawyer:

—Unfortunately, there are many problems in teaching children with disabilities (and I’m not just talking about SMA).

Teachers should come to a disabled child at home, in elementary school – twice a week, in secondary and senior subject teachers should go once a week.

But there are not enough staff, and teachers go every other time or a child with a disability is limited in the number of subjects for learning, for example, homeworkers do not have music, physical education or computer science. Therefore, they may not issue a certificate with honors, even if all grades are “5”. But this is not the case of Yana Timoshenko, she studied all subjects. Therefore, this whole situation is, to put it mildly, strange.

Yes, taking an exam for a disabled child is different from taking an exam for a healthy child. If there are 3 teachers for the whole class of 30 people, then the same 3 teachers will control one child with a disability, and the process is filmed. I think even a healthy adult can hardly endure such moral and mental stress.

I am convinced that children with disabilities (especially mentally intact ones) should learn and communicate with all children.