The scandal involving the director of the children’s hospice “House with a lighthouse” Lida Moniava and her guardianship of a boy with severe developmental disabilities has exposed many sensitive issues. If a child cannot explain what he wants and what not – can we make decisions for him? And if this child is terminally ill and, due to violations, is not able to express his will?
Lida Moniava1 took a 12-year-old boy, Kolya, from the House with a Lighthouse hospice. Due to disorders caused by birth trauma, Kolya could not speak, eat, move independently, he often had convulsions. The only way for him to tell the world that he is in pain is to scream or cry. He slept a lot, and when he was awake, he could follow objects with his eyes.
The boy spent 12 years in boarding schools, did not see anything but the ceiling of the ward, wore dimensionless shirts, because because of the position of his legs, they could not pick up his pants. Kolya lived with Lida during the quarantine period, and in the end she decided to take custody of him.
Linda changed his life. I came up with comfortable clothes for him, bought fashionable shoes, began to take him with me – to walk, to cafes and to friends. And then she pierced the teenager’s ear and arranged for a regular school.
The attitude of the public to such actions turned out to be ambiguous. Lida was accused of treating Kolya as an “inanimate object”, because he cannot express his attitude towards the earring or classmates. So – perhaps all this is contrary to his desires. The situation escalated when someone wrote a complaint about child care, and now the Lighthouse House is facing either a fine or suspension of activities due to inaccuracies in drug accounting.
There is an opinion
We have no idea who wrote the complaint and why. It is much more important to understand whether we have the right to decide for those who are not able to freely express their will? Opinions about whether it is possible to decide for a child with severe complications, what will be good for him, among commentators on social networks are divided.
“Personally, it doesn’t matter to me how many more earrings Kolya will have, but it’s valuable how many emotions he still has ahead of him, which he was deprived of in our humane PNI, where everything is according to the “rules”.
“One glance is enough to see the tremendous positive dynamics between Kolya in the boarding school and Kolya now. Maybe this is the problem for some?
“Of course, there is an improvement … while others lie and suffer in the imprisonment of PNI and their own bodies. The people who complain don’t know how to break the system or don’t want anyone else to break it. Indeed, in the world in which Kolya is today, there is life and a chance to live emotions and feelings, while in the imprisonment of the “system” a person simply dies off, like a frozen bud on a branch in winter.
“Many people cannot give their children and grandchildren what Lida does for Kolya, hence such a violent reaction”
“I saw a girl in a wheelchair with a woman and three employees of the mobility center. For 4,5 years of living in this area, I saw such a picture for the first time. That’s how rarely they leave the house. I don’t know if she goes to school. If not, then I want to study.
“I will take my child from such a class (where children with special needs study – ed.). Learn and look at the snot yourself!”
“I hope your children are studying with severe disabilities, and the whole lesson is spent trying to calm down the screaming child. Everything has its place. In our class, such a “special” brought a needle and decided to gouge out his eyes, they didn’t let him, so he set fire to the briefcase. Do you think in white coats that such children should study in a regular school? Well, good luck to you, sympathizers.
“And if there is only one wheelchair user and there is no one to help him overcome the same steps in his own entrance, then again this is not for us and not about us, alas …”
“Can Kolya agree or disagree if he is offered a job? Can he understand what exactly he is offered to do? If he worked in this way, how could he express whether he was comfortable or uncomfortable? If we speak in the context of human rights, then Kolya’s rights are not taken into account here from the word “absolutely”. His role is instrumental, his mission is sacrificial.”
The right to decide
It seems that people with disabilities are still invisible, and many would like to keep it that way. Some believe that children are safe, conditionally normal, and will be traumatized if they see a “different” child. And as it turns out, not only children.
Many adults do not want to see these “others” on the street and in public places. They “interfere”, frighten. And someone thinks that an active life is a mockery of those who spent all 12 years in the ward. What can we say about piercing and buying fashionable clothes! I would like to remind you that when we baptize a baby, or pierce a one-year-old girl’s ears, we also do not ask their permission. And quite often, parents acquire wardrobe items for normotypical children without asking their opinion and without giving them a choice. And in general, we decide a lot for them.
“In our country, for people like Kolya, there is no other experience than boarding school. We are just beginning to raise the topic of neuropsychiatric boarding schools, talking about people with severe, multiple developmental disorders. Previously, it was as if they did not exist. Each of us at this moment has a lot of strong emotions, and at the same time there is no experience of how to cope with them, ”explains psychotherapist Veronika Shutova.
“We are only learning, forming attitudes towards those who are different from us. It is when there is little experience, little professional knowledge, and at the same time a lot of emotions, and there is such a spread of opinions and such a sharp reaction to what we ourselves do not dare to do, ”adds the expert.
The case concerns a media person and a problem that we are used to hushing up, this has affected many people
The fact is that most of the commentators who criticize Lida’s behavior are parents of children with disabilities. The reality so far is such that, unfortunately, even the simplest thing is inaccessible to many – to take the child out of the house to the street, to go to the cinema or on vacation with him. Often, such families cannot even achieve the installation of a ramp in the entrance for years. Due to many problems, fatigue, pain, anger accumulate. Emotions require an outlet – this is how the human psyche works. And the “target” at which the arrows of anger will fly can be a public figure who can organize a much higher level of comfort for a teenager with developmental disabilities, makes bold decisions.
“The question arises whether we consider people with disabilities to be people with free will. If not, then along with the responsibilities that we take on, we also receive some rights. Also, parents of young children make decisions for them, and sometimes serious decisions, for example, those related to faith, ”explains the psychotherapist.
This dispute affects not only the interests of people with neuropsychiatric disorders. Parents themselves decide at what age to give children freedom of expression. Wait until adulthood or decide for yourself? Baptize a baby or wait until he wants to? There are no clear boundaries and rules, there are only the responsibility and rights of the parent.
“Today spears break not only around seriously ill children. Should I teach a child from 7 months English? Should I take you to kindergarten? We all treat children differently, we adhere to different educational methods, – says the psychologist. – But due to the fact that this time it concerns a media person and a problem that we are used to hushing up, these disputes have affected the interests of many people. The discussion showed a lot of fear and pain.”
Know more to not be afraid
We cannot get away from the influence of the social environment, the past, stereotypes. Patients are often stigmatized. They look at them through many prisms that distort reality.
“Orthodox traditions are strong in our country, therefore many people treat people with special needs as holy fools who should be pitied and who, in turn, should be orphaned, miserable and cause pity. Following this logic, they cannot be decorated and create a decent life for them,” the expert says. But what if we recognize their right to be different? A calm attitude to the fact that we are not alike is one of the guarantees of a humane society, where everyone is valuable.
And therefore it is worth striving to make our horizons wider, and the prisms through which we look at the world – more, cleaner. This is the area of responsibility not only of individuals, but also of foundations and the state: to talk about what is happening in the PNI, how children who cannot be cured live, what they need and how to help them.
We ourselves have a long way to go to figure out what exactly we experience when faced with such a complex topic, and how we react to it. We may be sad, scared, or uncomfortable, but do we let these feelings out by leaving rude comments, or do we look for the origins of our emotions and process them?
Everyone has the right to be who they are. Even the most severely disabled person has the right to become visible and not “transparent” to others. And if an earring, bright shoes, trips and other signs of an ordinary, in general life, make us reflect, reflect and look for answers, so be it.
1 https://www.facebook.com/lida.moniava