"I do what depends on me, where I am" - Ulyana Pcholkina about the activities of the "Active Rehabilitation Group", inclusiveness in Ukraine and living conditions of people with disabilities
Ulyana Pcholkina is a public figure, a member of the board of the Active Rehabilitation Group, a world champion in karate among women in wheelchairs and a media personality. As a result of a serious injury, Ulyana has been using a wheelchair for 16 years and takes an active part in rehabilitation and support programs for people with disabilities. We talked to Ulyana and discussed the problematic issues of socio-economic policy of Ukraine in relation to people with disabilities and the situation in the country as a whole.
Ulyano, you are the program manager of the NGO "Active Rehabilitation Group" (GAR) for people with spinal cord injuries. What projects have you managed to implement and which ones are next?
In Ukraine, this movement of active rehabilitation was launched in 1992, it came here from the Swedish NGO RG . I am currently a program manager, board member, instructor and organizer. We hold active rehabilitation camps, which are aimed at maximally socializing and adapting to new living conditions a person who has been injured and uses a wheelchair. The uniqueness of our technique is that we work on a "peer-to-peer" basis - our instructors also have similar spinal cord injuries and also use a wheelchair.
Speaking of projects, the main areas of activity are active rehabilitation camps and the First Contact program. It is aimed at the work of first-contact instructors in medical and rehabilitation institutions with people who have just been injured. The task is to tell a person about the nuances of spinal cord injury, to help choose a wheelchair, to draw up documents that will be needed by the person, to tell about complications and how to avoid them. Work is also being done with their relatives and friends. In short, First Contact instructors are guides to adapting to new conditions.
One of the main projects we are implementing is InvaFishki, which aims to collect tips and life hacks for people with disabilities. Within the framework of this project, the Center for Assistive Technologies has been established, which will help people not only with advice, but also with actions.
Also, for the third year we have been working on the project " Fashion Inclusia ", it was created together with the figures of Ukrainian Fashion Week , and for two seasons, we worked it out on our own. Fashion Inclusia is designed to teach people with disabilities fashion professions, in particular - to work on the backstage with designers, models and at all locations of fashion shows. Our dream is to give people the opportunity to learn new professions. This year we are implementing this project with the support of the Ukrainian Cultural Foundation.
Also, we implemented the School of Active Rehabilitation for Girls "I can!", With the support of "Inspiration. Opportunities. Success". It is essentially an active rehabilitation camp, but the program is more aimed at women. During the pandemic, we managed to implement such a school online.
We have a lot of plans and projects, so stay tuned.
Is the state sufficiently financing GAR projects, do you receive support from the ministry?
No, today the state does not finance projects of the NGO "Active Rehabilitation Group". This year we applied for the competition for the Fund for Social Protection of the Disabled, but it was very non-transparent and there are facts that show that the results were rigged in favor of individual NGOs. For example, our identical camps were evaluated differently, missed one project, but took a lot of money, so we can not even do it. We refused to sign the agreement with FSZI with a heavy heart. We will go to court to the Social Protection Fund and the Ministry of Social Policy, because in fact they are not doing their job. For example, they allocated 2.7 million hryvnias for another accessibility map, which is not really needed. Projects are evaluated in a very strange way. We knew that the protocols were not signed by two members of the commission, so we will deal with it in court.
Are charitable or non-governmental organizations involved in your projects? What is / can be their participation, apart from donations?
Yes, of course, we cooperate and be friends with other organizations. We work with wheelchair users to work with organizations such as Feel to help people with hearing impairments, See with the Heart, and Family, which work with children and adolescents with severe disabilities. . We work with Fight for Right , which deals with visually impaired people and conducts human rights activities. We collaborate, collaborate and make friends with various organizations.
We are very united in the struggle for a transparent distribution of public funds. You can even see the hashtag in Facebook# джжкоштинедляобраних. We have united around making public funding transparent and competitive. After all, it can be available to people who really provide services and do cool projects, and not by agreement, a separate line, as it was before.
You also involve volunteers in the organization’s tasks. How willing is the public to meet you, are there not enough resources to help the participants of the camps and your programs?
Of course, we involve volunteers in the activities of the "Active Rehabilitation Group", we have a Service Group at the Camps - these are people who help people with disabilities in the learning process in those actions that they can not perform on their own, insure training and more. For many years, our instructors worked as volunteers. In general, this movement was founded by volunteers. There were projects where it was possible to cover people’s wages and in the future we believe that any work should be paid, especially so hard. We are currently searching for, for example, lawyers in connection with our lawsuits with the state.
And how does a volunteer get to you and what responsibilities does he / she take on when working with you?
Anyone can join. If someone wants to directly participate in the Active Rehabilitation Camp as a volunteer of the Service Group, there is a questionnaire on the GAR website, you can fill it out and get to our database. Of course, there are no queues, but there are always people.
So you can write on the GAR page on Facebook , or through the site, and join our activities, because any competencies and interesting proposals will agree with us, so - welcome .
Now we plan to expand our team of offices in Kyiv, and we will involve people on a volunteer basis, and then - to develop and seek sustainable funding.
Do your volunteers work in the areas of psychological support for GAR participants?
We do not have a specialized direction of psychological support, but during the quarantine a project was made with the support of the Renaissance Foundation called "Wheels of Help", where communication was conducted with people who use a wheelchair. After all, you know, the chair is an additional tool for bacteria, it is difficult to disinfect and go somewhere to get to the hospital. So in this project we provided psychological support, help with finding a job, as well as help with food and hygiene products. We created a questionnaire that you could fill out and get help with. If GAR is sought for psychological support, I am personally looking for volunteers who are willing to provide such counseling. In Peer-to-Peer Active Rehabilitation Camps, our instructors who use wheelchairs inspire people who have just got into such a situation, for a full life. This psychological tool works in 99.99% of cases.
EU countries have established design rules and regulations, in violation of which no building is approved for construction by the municipal authorities. How acute is the issue of availability of special equipment on the streets of Ukraine?
This is a difficult issue in Ukraine. In our country, building codes used to be of a recommendatory nature, only in April 2019 a new version was signed and made mandatory, and from 2021 they came into force. And nothing has changed. Because, for example, from April 1, all medical institutions had to become architecturally accessible to less mobile groups, otherwise they would not have received a license. But let’s go to any hospital and see how they "became available". Although our independent state is already 30 years old, the real movement on the inclusiveness of buildings began only in 2021! So we are just at the beginning. Many things are done and built with violations and it is very difficult to find those responsible.
Here in Europe, or in the United States, where I traveled, is a completely different level. But abroad it has been more than 50 years since we started working in this direction, so there is nothing to compare yet. Our struggle continues, we have something to work on.
If in the capital of Ukraine only a small part of the buildings has some architectural accessibility, then what about the periphery? Can a person with a disability hope for decent living conditions in the provinces?
Availability throughout Ukraine is not okay. But in many small towns, there are activists who are working hard to improve the situation. They have very close and high-quality cooperation with the city administration. Kyiv, in my opinion, is worse in this aspect, because it is a rather large city, with a large coverage, we do not have many people who can control something. If we take into account a town or village where there is an active person who does not agree that his rights are violated everywhere, the situation becomes much more progressive. Usually, this person is one of our camps.
Let’s talk about education. In your opinion, is Ukraine paying enough attention to the issue of inclusion in education?
In fact, in my opinion, more attention has been paid to this issue in the past. I am not an expert in inclusive education, but I have heard many times that many processes have rolled back, canceled, stalled. However, we still cannot choose any university that is architecturally available to us, and this is discriminatory. The situation is the same in schools. But this movement has just begun, so I think everything will be fine.
I want to note that it would be more correct to say "children with special educational needs." These already include children with disabilities, children of internally displaced persons, children of migrants from other countries, and children from low-income families. Unfortunately, we have started talking only about children with disabilities, others are a bit forgotten. That is, these are children who need to correct the program, they must be included in the process, because inclusion is a process of inclusion.
In your opinion, is it possible to say in principle that Ukraine is moving in the right direction in terms of inclusiveness?
If we talk about the movement and rights of people with disabilities - this is only part of the inclusiveness that could be in the state. When we can all feel equal in one space, adapted and comfortable for all, then we can talk about some kind of inclusion.
In Ukraine, unfortunately, it has happened that inclusion is exclusively about people with disabilities, but this is not right.
I would not equate inclusion solely with the issues of people with disabilities. Of course, the situation is changing, a lot is changing, the LGBT community is becoming more visible, the gender movement is leveling off. Many questions arise for me, as a woman with a disability / an ally of the LGBT movement / a feminist, when I express my opinion on various issues. We are the ones who are dealing with these issues and we need to move them forward. Many people are starting to look at the world more broadly, stereotypes are breaking down, they are trying not to judge others in public, and that’s really good.
Even on the example of the media group, in which I have been working for 2 years as a coordinator of inclusion, on June 30 we were the first in Ukraine to adopt a policy on the LGBT + community. Believe me, this is a huge step. Internal trainings on inclusion in general are underway. It is a whole movement that supports gender issues, areas of work with people with disabilities, and now LGBT +.
I always try to look at things with optimism, and we now have a job to do - to improve the country. Sometimes I want to quarrel because I don’t have enough energy, but I still think that the result of cooperation will be more fruitful.
I would like to note that in 16 years of using the wheelchair, a lot has changed, but the changes are not coming as fast as we would like.
Today I note for myself what I can do for Ukraine - at least lay the groundwork for these changes to be irreversible. I am unlikely to live in such an accessible Ukraine as America, for example, but I really want the next generation to live in a better country and do what is up to me where I am.
Author Yevhenia Anniuk
Read also: Saving lives is not difficult: stories of those who have already joined the register of bone marrow donors COLLECTED 122,050
Ulyano, you are the program manager of the NGO "Active Rehabilitation Group" (GAR) for people with spinal cord injuries. What projects have you managed to implement and which ones are next?
In Ukraine, this movement of active rehabilitation was launched in 1992, it came here from the Swedish NGO RG . I am currently a program manager, board member, instructor and organizer. We hold active rehabilitation camps, which are aimed at maximally socializing and adapting to new living conditions a person who has been injured and uses a wheelchair. The uniqueness of our technique is that we work on a "peer-to-peer" basis - our instructors also have similar spinal cord injuries and also use a wheelchair.
Speaking of projects, the main areas of activity are active rehabilitation camps and the First Contact program. It is aimed at the work of first-contact instructors in medical and rehabilitation institutions with people who have just been injured. The task is to tell a person about the nuances of spinal cord injury, to help choose a wheelchair, to draw up documents that will be needed by the person, to tell about complications and how to avoid them. Work is also being done with their relatives and friends. In short, First Contact instructors are guides to adapting to new conditions.
One of the main projects we are implementing is InvaFishki, which aims to collect tips and life hacks for people with disabilities. Within the framework of this project, the Center for Assistive Technologies has been established, which will help people not only with advice, but also with actions.
Also, for the third year we have been working on the project " Fashion Inclusia ", it was created together with the figures of Ukrainian Fashion Week , and for two seasons, we worked it out on our own. Fashion Inclusia is designed to teach people with disabilities fashion professions, in particular - to work on the backstage with designers, models and at all locations of fashion shows. Our dream is to give people the opportunity to learn new professions. This year we are implementing this project with the support of the Ukrainian Cultural Foundation.
Also, we implemented the School of Active Rehabilitation for Girls "I can!", With the support of "Inspiration. Opportunities. Success". It is essentially an active rehabilitation camp, but the program is more aimed at women. During the pandemic, we managed to implement such a school online.
We have a lot of plans and projects, so stay tuned.
Is the state sufficiently financing GAR projects, do you receive support from the ministry?
No, today the state does not finance projects of the NGO "Active Rehabilitation Group". This year we applied for the competition for the Fund for Social Protection of the Disabled, but it was very non-transparent and there are facts that show that the results were rigged in favor of individual NGOs. For example, our identical camps were evaluated differently, missed one project, but took a lot of money, so we can not even do it. We refused to sign the agreement with FSZI with a heavy heart. We will go to court to the Social Protection Fund and the Ministry of Social Policy, because in fact they are not doing their job. For example, they allocated 2.7 million hryvnias for another accessibility map, which is not really needed. Projects are evaluated in a very strange way. We knew that the protocols were not signed by two members of the commission, so we will deal with it in court.
Are charitable or non-governmental organizations involved in your projects? What is / can be their participation, apart from donations?
Yes, of course, we cooperate and be friends with other organizations. We work with wheelchair users to work with organizations such as Feel to help people with hearing impairments, See with the Heart, and Family, which work with children and adolescents with severe disabilities. . We work with Fight for Right , which deals with visually impaired people and conducts human rights activities. We collaborate, collaborate and make friends with various organizations.
We are very united in the struggle for a transparent distribution of public funds. You can even see the hashtag in Facebook# джжкоштинедляобраних. We have united around making public funding transparent and competitive. After all, it can be available to people who really provide services and do cool projects, and not by agreement, a separate line, as it was before.
You also involve volunteers in the organization’s tasks. How willing is the public to meet you, are there not enough resources to help the participants of the camps and your programs?
Of course, we involve volunteers in the activities of the "Active Rehabilitation Group", we have a Service Group at the Camps - these are people who help people with disabilities in the learning process in those actions that they can not perform on their own, insure training and more. For many years, our instructors worked as volunteers. In general, this movement was founded by volunteers. There were projects where it was possible to cover people’s wages and in the future we believe that any work should be paid, especially so hard. We are currently searching for, for example, lawyers in connection with our lawsuits with the state.
And how does a volunteer get to you and what responsibilities does he / she take on when working with you?Anyone can join. If someone wants to directly participate in the Active Rehabilitation Camp as a volunteer of the Service Group, there is a questionnaire on the GAR website, you can fill it out and get to our database. Of course, there are no queues, but there are always people.
So you can write on the GAR page on Facebook , or through the site, and join our activities, because any competencies and interesting proposals will agree with us, so - welcome .
Now we plan to expand our team of offices in Kyiv, and we will involve people on a volunteer basis, and then - to develop and seek sustainable funding.
Do your volunteers work in the areas of psychological support for GAR participants?
We do not have a specialized direction of psychological support, but during the quarantine a project was made with the support of the Renaissance Foundation called "Wheels of Help", where communication was conducted with people who use a wheelchair. After all, you know, the chair is an additional tool for bacteria, it is difficult to disinfect and go somewhere to get to the hospital. So in this project we provided psychological support, help with finding a job, as well as help with food and hygiene products. We created a questionnaire that you could fill out and get help with. If GAR is sought for psychological support, I am personally looking for volunteers who are willing to provide such counseling. In Peer-to-Peer Active Rehabilitation Camps, our instructors who use wheelchairs inspire people who have just got into such a situation, for a full life. This psychological tool works in 99.99% of cases.
EU countries have established design rules and regulations, in violation of which no building is approved for construction by the municipal authorities. How acute is the issue of availability of special equipment on the streets of Ukraine?
This is a difficult issue in Ukraine. In our country, building codes used to be of a recommendatory nature, only in April 2019 a new version was signed and made mandatory, and from 2021 they came into force. And nothing has changed. Because, for example, from April 1, all medical institutions had to become architecturally accessible to less mobile groups, otherwise they would not have received a license. But let’s go to any hospital and see how they "became available". Although our independent state is already 30 years old, the real movement on the inclusiveness of buildings began only in 2021! So we are just at the beginning. Many things are done and built with violations and it is very difficult to find those responsible.
Here in Europe, or in the United States, where I traveled, is a completely different level. But abroad it has been more than 50 years since we started working in this direction, so there is nothing to compare yet. Our struggle continues, we have something to work on.
If in the capital of Ukraine only a small part of the buildings has some architectural accessibility, then what about the periphery? Can a person with a disability hope for decent living conditions in the provinces?
Availability throughout Ukraine is not okay. But in many small towns, there are activists who are working hard to improve the situation. They have very close and high-quality cooperation with the city administration. Kyiv, in my opinion, is worse in this aspect, because it is a rather large city, with a large coverage, we do not have many people who can control something. If we take into account a town or village where there is an active person who does not agree that his rights are violated everywhere, the situation becomes much more progressive. Usually, this person is one of our camps.
Let’s talk about education. In your opinion, is Ukraine paying enough attention to the issue of inclusion in education?
In fact, in my opinion, more attention has been paid to this issue in the past. I am not an expert in inclusive education, but I have heard many times that many processes have rolled back, canceled, stalled. However, we still cannot choose any university that is architecturally available to us, and this is discriminatory. The situation is the same in schools. But this movement has just begun, so I think everything will be fine.
I want to note that it would be more correct to say "children with special educational needs." These already include children with disabilities, children of internally displaced persons, children of migrants from other countries, and children from low-income families. Unfortunately, we have started talking only about children with disabilities, others are a bit forgotten. That is, these are children who need to correct the program, they must be included in the process, because inclusion is a process of inclusion.
In your opinion, is it possible to say in principle that Ukraine is moving in the right direction in terms of inclusiveness?
If we talk about the movement and rights of people with disabilities - this is only part of the inclusiveness that could be in the state. When we can all feel equal in one space, adapted and comfortable for all, then we can talk about some kind of inclusion.
In Ukraine, unfortunately, it has happened that inclusion is exclusively about people with disabilities, but this is not right.
I would not equate inclusion solely with the issues of people with disabilities. Of course, the situation is changing, a lot is changing, the LGBT community is becoming more visible, the gender movement is leveling off. Many questions arise for me, as a woman with a disability / an ally of the LGBT movement / a feminist, when I express my opinion on various issues. We are the ones who are dealing with these issues and we need to move them forward. Many people are starting to look at the world more broadly, stereotypes are breaking down, they are trying not to judge others in public, and that’s really good.
Even on the example of the media group, in which I have been working for 2 years as a coordinator of inclusion, on June 30 we were the first in Ukraine to adopt a policy on the LGBT + community. Believe me, this is a huge step. Internal trainings on inclusion in general are underway. It is a whole movement that supports gender issues, areas of work with people with disabilities, and now LGBT +.
I always try to look at things with optimism, and we now have a job to do - to improve the country. Sometimes I want to quarrel because I don’t have enough energy, but I still think that the result of cooperation will be more fruitful.
I would like to note that in 16 years of using the wheelchair, a lot has changed, but the changes are not coming as fast as we would like.
Today I note for myself what I can do for Ukraine - at least lay the groundwork for these changes to be irreversible. I am unlikely to live in such an accessible Ukraine as America, for example, but I really want the next generation to live in a better country and do what is up to me where I am.
Author Yevhenia Anniuk
Read also: Saving lives is not difficult: stories of those who have already joined the register of bone marrow donors COLLECTED 122,050