12 Aug Her husband said: ‘We will not manage such a child, we must give him up’
Photo: Shukhrat Latipov / Gazeta.uz
I learned about Anisa Shamsutdinova through her non-profit social-informational project “Downside Sport” which is known not only in Uzbekistan but in Central Asia and post-Soviet space in general. Her project supports parents raising children with Down syndrome in Uzbekistan and supports their social inclusion through sports activities. Anisa herself is the mother of a child with special needs and recently the independent information project Nemolchi.uz (Don’t Be Silent) published Anisa’s personal life story and I decided to publish the English translation here.
Her life was planned, as in a training manual: school, institute, marriage, pregnancy, the birth of a son, a second pregnancy, the birth of a second son. And then everything turned upside down. At the hospital they said at discharge:
You need a consultation with a geneticist, we suppose you will have a child with Down syndrome. But compared to Cerebral Palsy, this is the best thing to expect. The main thing is not to tell your husband.
She came home in tears. She told her husband that she had a toothache. But when they were left alone, she shared that their newborn baby was suspected to have Down syndrome. The young parents did not know what it was. They went online. In 2014, there was not a single positive story: these children are deaf, they can’t do anything. Young parents examined the child. Everything seems to be normal. So, they thought this was not their case, especially since the doctors did not say exactly.
Two weeks later, they called from the hospital: “Have you done a screening, have you passed an analysis to clarify the diagnosis? It is obligatory”. Anisa with her husband and baby went to a private clinic, did the tests, they were told to wait 1-2 months. They contacted the geneticist, whose number was given in the hospital. The doctor examined, but did not say anything definite, suggested waiting for the results of the analysis.
The clinic called back in 10 days: “Come, your results are ready.” The diagnosis was confirmed. In the evening she told her husband about it. He recalled that they are still young, their income will not allow them to put such a baby on its feet. He offered to send his youngest son to an orphanage, a specialised institution for such children because there are the necessary conditions there. Anisa did not understand how could she give the child away. The husband said that he would bring her every day to communicate as a volunteer. The only purpose so that their family did not have such a child:
Our eldest son is growing up. He will walk with him in the street and he will be told “your brother is Down”, he will be shy.
Unable to comprehend what was said, Anisa no longer raised this topic. 40 days have passed since the birth of the baby, parents from both sides came to visit. Since the child slept almost all the time, they began to ask about his health. The young people did not talk about the diagnosis but answered that the child had special developmental needs. They also added that the father wanted to send his son to an orphanage. The reaction was different:
- Those relatives close to her husband said: “You won’t be able to manage, why do you need a sick child, give birth to another, healthy one. And send this one to a specialised institution, you will visit him there. Why do you need this now?” Anisa does not blame them: there was a person with a disability in her husband’s family, and his mother “worked for medication”. People in such a situation have different reactions: someone will prefer to go to the end, someone will get rid of it. Everyone acts according to their capabilities and values, according to Anisa.
- Anisa’s parents suggested another option: “Well, if my husband doesn’t want to see him at home, let’s take him to us. We will raise and educate him. You will help us financially for his education, we will take care of the rest. If only your family does not collapse.” Alas, Anisa’s husband did not support this proposal. He wanted this child to be nowhere close at all so that no one would know that they had such a son.
For several months, the husband and his family tried to persuade Anisa to give up the child. During this time, the father completely stopped noticing the younger son.
When I was in the shower, the child could cry – but no one approached him. I heard crying through the door, once I even timed it to know when the limit would come. Thirty minutes passed, and no one approached him … As soon as the official diagnosis appeared, the husband stopped taking the child in his arms. He refused to buy baby nutrition – saying that he ate so much and that he would not feed him. When it was necessary to take tests, go to the doctors, he refused to take me or, if there was a queue, turned around and offered to leave.
Most of all, Anisa was oppressed by duplicity: when they went out for a walk, her husband defiantly drove a stroller and portrayed a wonderful father for both boys. As soon as they came home, the youngest son became an empty place. “We must give him up, we must give him up,” the young mother heard every day.
The baby was 4 months old when Anisa went to work because her son needed money for a massage. The husband refused: “Why should I spend on him if I will give it back tomorrow anyway? It won’t help anyway.” She got a job as a fitness trainer in several gyms, sometimes she came to classes with her youngest son. In the spring, after one of these classes, I decided to go to the class of the eldest son. The husband offered to pick them up in his car. He put the eldest son inside and said that the trunk is full, so the stroller will not fit there. As a result, the husband left with the elder, and Anisa with the stroller and the baby remained on the street. This was the last straw. She returned home and said that it was time to break up.
At the same time, the husband allegedly did everything to save our family. That is, he systematically dripped on the brain: “Let’s give up, you know, we must do it for the sake of the child.” Because when the diagnosis was announced, he put it bluntly: “Either we refuse the child, or I’m getting divorced. And you, accordingly, pull two children yourself.” It was said in such a context that “you understand, our mentality, no one will take you with two children, you will now go from hand to hand, you have to feed the children.
On May 9, when Anisa and her children were with her parents, her husband sent an SMS: “I feel sorry for everyone, I feel sorry for us, I can’t do this anymore, I packed my things.” She rushed home, he was already standing with suitcases …
The husband periodically returned and went, as if they lived together, and at the same time separately. Four of us walked on the street, at family events he fiddled with both sons. And at home, everything returned: we are a family, and Oscar is nobody. When Anisa spoke about the dual behaviour of her husband, no one believed her: “You probably have postpartum depression. It can not be”.
A year later, Anisa decided that she could not live in such a regime. She will not leave her son, there remains a divorce. The husband filed for divorce. In the statement, he indicated that he did not want to keep the family, because a sick child was born, and he was not ready for this. The court refused to divorce, they gave time to save the family.
While time passed, the husband decided to sell the car, acquired in a joint marriage. Anisa agreed, on the condition that he would pay half the amount from the sale to her because she was also bought in half. The husband agreed, found a buyer and announced to her the amount three times less than originally assumed. She agreed, you never know for how much he sold the car. In addition, the child needed money for a massage. Later, while signing the documents with a notary, I realized that he had sold the car at a higher price … This deception remained on his conscience.
The eldest son often visited his paternal grandparents. Returning, he became aggressive, directly saying:
I don’t need Oscar, let’s give him back so that dad can live with us. We must get rid of him.
This increased the desire to quickly divorce. But for the second time, the court gave time for family reconciliation.
Anisa did not limit the communication between her father and children. The husband came to the elder, brought big bags of toys and sweets, the boy took everything for himself: “This is from my dad, only mine.” For the youngest, the father did not bring anything. Over time, Anisa got tired of this, especially since every time after a son’s communication with his father and his relatives, he returned aggressive towards his brother. Circumstances have escalated: divorce is not allowed, the child must be constantly brought to life. What to do? Anisa forbade her husband to take her eldest son and filed for alimony. The husband brought a certificate that his salary was 600 thousand Uzbek soum. Now he pays alimony for two children in the amount of 234 thousand soums. She also receives additional payment from his salary to support a child with a disability. This is another 175 thousand soums.
Every trial was so humiliating that I had to prove that I was not a camel. Everything was furnished so that at 12 weeks it was possible to determine that the child was with special needs. That I did not specifically say, I hid it and gave birth to a sick child. And now I vilify such a holy person. Although the court was just about divorce. There were lawyers on both my side and his side. My husband’s lawyer visited all the houses of Muruvvat and said that there are so many institutions where I could donate my child for free. And I pull so much money from my husband in the form of alimony.
The issue was resolved with alimony. The question arose of communicating with the eldest son. Anisa refused her husband to communicate with her son due to psychological pressure. The husband filed a lawsuit that he was not allowed to communicate with children. Because in court he always stressed: “My two sons …”. The trial was hard and complicated. The father said in court: “I would be happy to take two children, but the child is small, you understand his diagnosis …” At that time the child was three years old, he went to kindergarten and fully served himself. The court gave time for the parents to agree on when to pick up their children. They did not agree, as the husband still wanted to see only the older child. As a result, the court ruled that the father can take both children on Sunday and on holidays.
He wanted to take only the elder one. I told you to pick up two. Then the youngest was already 4.5 years old. He served himself completely, an ordinary child. My husband began to say that he would come to me with bailiffs, that I did not give him children. Then I told my husband that I would bring two children to the makhalla, to the district police officer, and then I myself as you want. Because all the shit was at home, but in public: “I am the father of two children, I have two.” I was afraid that otherwise he would come, take only the elder one, and I could not prove it. The husband, of course, did not come.
He picked up the youngest son only once, and then called every five minutes: “He wet himself, he shit himself” The child was almost 5 years old and he fully served himself. Now the husband takes only the eldest, Anis does not interfere. She sees that her son wants to communicate with his father. But he also sees that the psychological pressure on him does not stop.
Anisa often laughs during a conversation. Especially in those moments when it is difficult for her to voice some things … For example, many still do not know that she is divorced. No one knows that she was faced with a difficult choice. And her husband left her because she did not betray her child….
Anisa Shamsutdinova created the OSKAR T21 project in support of the same children and parents. She herself fills in applications for participation in various competitions, gathers like-minded people, conducts activities and inspires others. She is also involved in coaching, developing new programs and travelling to various conferences to share her experience. Little Oscar, an unusual child, became another inspiration for her and opened up new powers and possibilities.
From Anisa Shamsutdinova:
After the first divorce trial, I was ashamed:
- It’s a shame that I could not keep my family together.
- It’s a shame that I gave birth to a “sick” child.
- It’s a shame that I disobeyed my husband.
There were many more things that she was ashamed of.
It took me several years to understand and realize what it means to be ashamed.
- It’s a shame when you pay alimony for 2 children in the amount of 234 thousand soums, while the children were born in a legal marriage.
- It’s a shame when your son says to friends in the camp: “I don’t have a dad.”
- It’s a shame this is when your child picked up at school by the actual father and not you as biological father.
- It’s a shame when promising your child to pick him up for the weekend, you get lost for several months.
It will take a long time to list all such things that you should be ashamed of.
I understood one thing for sure, to be a happy mother and a beloved woman is not uyat (in Uzbek shame).
Even so, my status in the mahalla is a single mother. The main thing is that I am surrounded by people whom I respectfully call Human. Nothing is impossible, the impossible takes a little more time and desire!