There is no need to add even legends about the sadism of Russian officials; the reality will surpass any legend. Another evidence of this is in the post of the famous Russian public figure, deputy director of the Children's Hospice House with a Lighthouse ("Dom s mayakom") Lida Moniava:
“Today Kolya and me went to the MFC (Multifunctional center for the provision of public services) Maryina Roshcha to make a passport. It turned out that making a passport for a disabled person is a whole story.
There are new passports for 10 years and old ones for 5 years. I chose a passport for 10 years. I applied for public services, paid the fee online, then we received an invitation to personally come to the MFC.
In the office of the MIA department for migration, the lady met Kolya with a question: "Does he even have fingers?" Then she asked: "Well, how am I going to photograph him?" A passport photo must be taken in a special booth that does not fit a wheelchair. If the child is unable to sit, someone should pick him up and hang him in the booth in front of the camera. While I was squeezing into the booth with Kolya in my arms (he now has a bruise on his knee), I tried to defuse the situation by laughing at the inconveniences one had to endure for the sake of a passport, but the lady made a remark to me: “Nothing's funny”.
A tip for the MFC: you can make a bigger booth or not a booth at all, but a curtain. And the camera can be made in such a way as to lower and raise it, and not to suspend a person at the level of the camera.
I held Kolya in front of the camera, the lady said that he should open his eyes. You cannot be photographed with your eyes closed for a passport. Kolya cannot be asked or forced to open his eyes, he opens them when he wants. In a stressful situation, he can pretend to be asleep and not open his eyes on purpose. So it was in this booth - Kolya was hanging with his eyes closed. The lady suggested to press Kolya on his eyelids so that he would open his eyes. I tried to tickle Kolya, shake him, wash him with water - nothing helped. The lady became annoyed. She said that she could not sit here with us all day (although sitting is much easier than holding Kolya in her arms!). She said that people will now be indignant. She offered to cancel my application for a new passport, come again to the MFC, they would put a stamp on the certificate and refund the money based on this certificate. In the end, Kolya opened his eyes, but what about those who can't open their eyes at all?
Fingerprints should have been done. The terminal for scanning fingers is located in the middle of the table on a short wire. The lady said that it cannot be moved and that it should be moved closer to Kolya's terminal. Kolya has contractures in his elbows, he cannot stretch. I had to lay it out on the table to reach the terminal with my finger. This is in an era when wireless devices have already been invented that can be brought to a person, and not a person to bring to the device. A tip for the MFC: If wireless is expensive, buy a long wire at least.
The strangest thing is that the MFC did not consider these problems to be their own problems (in fact, they did not make a truly accessible environment for themselves). And they blamed everything on Kolya - that the problem is Kolya - Kolya does not open his eyes, that Kolya cannot sit in front of the camera himself, that Kolya's arms do not bend, that Kolya is lower than the camera. 5 times they told me “you broke everything here” and were very annoyed with Kolya and me.
It would be nice in Moscow MFCs:
- Trained staff to respond politely and friendly to people with disabilities.
- Make your services really accessible to people with disabilities. Accessibility is not limited by a ramp and an elevator.
And the lady, who was on duty on July 28 in the MIA department for migration at the MFC Maryina Roshcha, needs a personal training on communication with people with disabilities.
Today I have given interviews about Kolya's earring 3 times. In the end, I myself understood the great meaning of this earring.
Colin's earring is like the only bridge between society and Kolya. The only common place.
People did not live in a boarding school, so they cannot try on this fate for themselves or their children. For society, the boarding school is something distant and incomprehensible.
We didn’t ride in a wheelchair, so it’s difficult to understand in all colors what the problem is with the ramps and transport. How sucks that the support service for disabled people in the metro only works until 8 pm.
They didn’t eat through a tube through a gastrostomy tube and didn’t know that the state practically does not provide medical food for a gastrostomy tube, so almost all children in boarding schools are thin as in Auschwitz.
Didn't suffer from 70 seizures a day. Therefore, they are unlikely to understand that death in such a situation is the natural course of things, and it is inhumane to reanimate and connect a person to ventilation in such a state. It is important to give terminally ill patients the right to refuse mechanical ventilation.
These all the important things that make up Colin's life are a blank spot for society.
The ear ring is the only common place between ordinary people and Kolya. With the earring, everything is clear. Some have it, others don't. Some were allowed to their children, others were not allowed. Some on the left, others on the right (it turned out that this also has some sense!). Each person has their own opinion about the earring, and many even have a need to speak out.
How to make sure that all the problems of disabled people also excite society like an earring.
P.S. By the way, the earring really works. When we were in Davydovo, 2 village girls came up and began to look at Kolya, asked why Kolya did not walk. I said that Kolya was injured during birth, so he does not walk, but he has an earring. The girls hung around Kolya for a long time, discussing the topic of the earring..."