Daria Gerasimchuk: "Ukrainians have finally begun to recognize deaf people as members of society, not a separate caste"

Every day, Ukrainian society is moving towards the inclusive development of all spheres of life. One of the problems that is increasingly "breaking through" to the stagnant post-Soviet space is the lives of totally deaf people. Darya Gerasimchuk, executive director of the Vidchuy public organization, told Ufond about how people with hearing problems face today, what difficulties a totally deaf person faces, why Ukrainian society is ready to recognize the problem and the state does not yet.

Daria, tell us, how did the organization "Feel"? What are the specifics of her work?

-"Feel" is a project created by Andrei Pyshny in 2011. He began to deal with this problem when he became a totally deaf person. Faced with the difficulties of communication in the family, with friends who had no idea how to behave in this situation. UTOG ("Ukrainian Society of the Deaf and Dumb") initially advised to learn sign language, but as in modern society, where the vast majority of people do not speak this language, to live with such a problem is unknown. And we at the NGO "Feel" are trying to do everything to help a person with hearing impairment in modern society.

What exactly does "Feel" do?

-We do, we can say, everything - from children’s rehabilitation (we, by the way, at VDNH has the only rehabilitation center in Ukraine for children with hearing impairment, where about 60 children are rehabilitated every day) to help with employment and admission to universities for adults and adolescents. Recently, for example, they helped with the admission of a girl who wanted to be a deaf educator. An excellent student, by the way, although she herself has quite serious hearing problems. "Feel" pays her tuition and scholarship. However, we are not looking for money for treatment, but in glaring cases we turn to partner funds. We also teach sign language to anyone. Many do not understand how effective and necessary this skill is. This is very useful even for hearing people. Such knowledge does not make a person a superhero, but makes him a Man.

I have a 9-year-old daughter, Polina. When we were almost 2 years old, the doctors told me very incorrectly that I had a child who was completely deaf. Therefore, the topic is painfully familiar to me.

You use the term "totally deaf person." There is now a lot of controversy over terminology in relation to people with disabilities. Tell us initially, what words can and should be used when it comes to people with certain diagnoses?

- To speak of a person with a "disability", of course, is incorrect. Translated from English, it literally means "unfit." To say "a person with disabilities" is as wrong as "a person with special needs." In fact, each of us is limited in some of our capabilities and has our own special needs.
It is worth remembering one wording - a person with a disability. You should not say "disabled", "blind", "deaf", etc. There are quite adequate word combinations - a person with visual impairment, a person with hearing impairment and others. But not "spinal", not "cerebral palsy" ... Such formulations characterize the language of the lagging behind society. For that matter, the word "man" is worth remembering in the first place. And each of us has a name.

There are, by the way, just incorrect terms. For example, the word "sign language interpreter". "Surdo" - literally translated from Latin means silence, and, you will agree, in the phrase "translator of silence" there is absolutely no logic.

Is our society ready for people with hearing impairments to feel comfortable in it?

-You know, over time the situation is slowly improving… If before people got used to the fact that deaf and dumb people simply do not exist, now this topic is coming to public attention. This continues thanks to the opening of borders and the opportunity to travel. I have often heard before from our people who have visited Europe, they say, how many disabled people there are! And what a healthy nation we are, after all, compared to these Europeans and Americans. Only this is not true… They just are not used to hiding people with disabilities behind a screen. They are full members of society who also claim normal living conditions. They also go out with everyone, and we in Ukraine are also slow, but we are moving towards such a practice.
Yes, it used to be considered that there were no such people at all. Since Soviet times, it was considered a separate caste of "their own". They have their own culture, their own little world. Now more and more attention is being paid to this problem in society.
Tell me, when you watched the President’s New Year’s congratulations on TV all 25 years of independence, did you see there a translation for people with hearing impairments? This is the first time this year. And every time people approached the TV and felt like phantoms who can find a job except at the supermarket or at a McDonald’s…

At what level of development is the legislation in this area?

-Now sign language is legally recognized as the language of deaf people. It is unlikely that such a level can be considered relevant today. The huge problem is that people do not know sign language and do not even think about the need to know it. Although I have noticed that as soon as people pay attention to a problem, as soon as it comes into their field of vision, they begin to perceive the world differently. They realize that they live in the same world and walk the same streets with people who cannot hear them.
In Sweden, by the way, sign language is recognized as the state language. And this is a normal practice that an inclusive society should strive for.

Are there any statistics today on the number of deaf people in Ukraine?

-No, during the whole stage of Ukraine’s independence there were no statistics as such. There are figures on the number of Ukrainian society of the deaf, but this is not about the real situation. And we are actively fighting for it to appear. We recently met with Deputy Interior Minister Anastasia Deeva, and she is ready to initiate some activities in this case.
If we talk about 2014, then in Ukraine even then every tenth inhabitant of Ukraine had a disability in general. After the start of the war, it was scary to think about indicators. When it comes to hearing impairments, potentially far more people can have them than even one in ten. Why? Even because of the usual vacuum headphones. They are insanely harmful to hearing. Much safer are headphones that do not insert into the ear canal and allow you to hear the external environment as well. See a man with vacuum headphones in his ears? Consider that in front of you is a person with potential hearing impairment.

If the problem is properly recognized, is the medical industry ready?

-Not ready - to put it mildly, although there are some positive changes. For many Ukrainians, the price of the issue is simply unbearable. A good speech therapist, a good deaf educator is very expensive. Rehabilitation of a child, for example, costs parents 6 thousand. hryvnia per month. In addition, not all speech therapists in Ukraine know anything about cochlear implantation for deaf people.

Is there any state cochlear implant program in Ukraine to help people with hearing impairments?

- No, she is not as such, and never was. People don’t even know what it is. We recently sent road maps to the Lora region, which indicate the problem of cochlear implantation.
When we operated on my daughter, she was on the 870th list. Earlier, I remember, the situation was catastrophic, because we made about 20 implants a year. On average, the implant costs about 23 thousand. euro, and not even the best. Rarely can anyone afford it if they don’t sell anything. For example, I had to sell an apartment in Kiev.

Last year, parents held rallies and introduced the Ombudsman for Children’s Rights, Nikolai Kuleba. Last year, about 50 million hryvnias were allocated for cochlear implantation, this year - 72 million hryvnias. Now the queue has shifted. The last number in line for an implant, as far as I know - 380th. If all goes well, then in a couple of years the queue will be "resolved".

Alas, there is also no program to replace speech processors, which are changed abroad every 5 years, regardless of whether it was worn or not. We need to stand in line for this, and only when he is already "junk". In the best case, this processor will be replaced in a year, taking into account all the bureaucratic nuances. This is similar to a corruption scheme: while the processor has not yet broken, parents turn to private companies for information about the breakdown, "thank" for it and stand in line. Or, for example, take someone else’s broken processor and pretend to be your own. And this is logical: until it really breaks in the child, you can have time, at least get a new one.

Have you faced a similar problem in person?

-My daughter has the same situation. We needed to change the processor 2 years ago, but we had it working, we did not apply to the state. Then he started working badly. We have rented a replacement processor, we pay for it, but in August we are already waiting for the replacement of the speech process at the expense of the budget.
In any case, we do not have a system, and this provokes corruption motives on both sides.

To what extent are Ukrainian state structures adapted to serve people with disabilities?

- We can say that in Ukraine there is no state structure that would be fully accessible to people with disabilities. We also distribute in other areas through partners.
For example, a blind person does not need a ramp, but tactile plates and "talking" terminals. A person who cannot hear does not need a specially equipped toilet in the administrative building, if in principle he cannot receive any service due to his diagnosis.
In Kyiv, we did some kind of "voluntary-forced" courses in the express mode for social workers. It was a two-week sign language training in all districts of Kyiv. By the way, in 2 weeks of classes per hour every other day it is quite possible to master sign language at the basic level. I will emphasize, it is sign language. This is a linguistic category. But sign language is in the field of psychology.

Accessibility should not only be architectural. It’s not just a ramp and specially equipped toilets. Full accessibility is when there is everything and for everyone.

12.07.2017

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