The Very First Days of War: A Story of Svitlana Demko, Civil Activist from Vinnytsia

30 Червня 2022 by Olga Zhurbenko

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Since the first days of the full-scale war, the public organizations of people with disabilities (disability NGOs) have been actively involved in helping the victims of war. The disability NGOs’ leaders include many women who often do the impossible to help Ukraine. The stories of such women are presented in the project “Enhancing the Leadership of Women with Disabilities in Gender-Oriented Humanitarian Responses in Ukraine”, which is being implemented by the National Assembly of People with Disabilities of Ukraine (NAPD) and funded by the United Nations Women’s Fund for Peace and Humanitarian Aid (WPHF). 

Ms Svitlana Demko, a project mobilizer and head of the NGO “Open Hearts” Association of Rights Advocacy and Assistance for People with Disabilities (Vinnytsia) recalls her first days of the war

“How well we lived has become clear to us only today, when we are more than 1300 km away from our homes. And every day we count the days of the war. Back then, we had other problems, but now we understand that those were no problems at all. That was just a cool and quiet life. When we would just settle different life-related issues for people with disabilities, for their families, to create different programs, to see the happy eyes of our children, young people and parents.”

The public organization Association of Rights Advocacy and Assistance for People with Disabilities “Open Hearts” (further on – “Open Hearts” Association, a NAPD member organization) has really created and implemented very many great programs and projects. These include a training center and workshops where children and young people with disabilities would create a lot of beautiful and interesting craft products. Prior to the full-scale invasion, the “Open Hearts” Association launched weekends for families, people and children with disabilities, when they could relax from everyday domestic problems, have a breath of fresh air, and renew one’s inner forces for their struggle with challenging situations. Unfortunately, it was possible to arrange only a few such weekend meetings before the war, and now one has just to wait for the victory and end of the war.

“Our ‘assistants’ in our branch office in Dorozhne village were greenhouses, vegetable gardens, a tractor, our cars… We hadn’t known that these cars would be saving lives in the war-time,” Svitlana continues her story. “We couldn’t even imagine a war to come… We would just live, care for all our ‘assistants’ – we loved them very much. We loved all our people – colleagues, clients of our center, and their parents. This is one more great friendly family of ours… We loved all our hard work: reports, filling in lots of various documents, which all later had a positive impact on the quality of life of people with disabilities; arranging celebrations, parties, and birthdays; zoom meetings with families held by our team members during Covid-19 pandemic. It also gave us very useful experience.”

The COVID-19 experience has proved to be useful in the wartime. For instance, the classes held as Zoom-meetings keep going and help reduce the level of stress affecting the health level of the partner organizations which cannot move abroad. During such meetings, psychological support is provided to those clients who were evacuated by their organizations on their own and to the people who managed to evacuate by themselves. They are staying in different parts of the world, but still find the strength to attend Zoom-meetings to find a rest for their souls, bodies, and minds, to intake love and support they are lacking so much now. And that is great! When the participants of a public organization or clients of rehabilitation institutions are real friends. As it is the case in the “Open Hearts” NGO.

“Since we departed – it is scary even to think how long ago it was – 115 days of the war have passed,” remembers Svitlana Demko. “And today it seems to me it was a whole lifetime ago… In the smallest detail do I remember the horror as soon as we learned that the war had begun… It was February 24, the day that has changed the life and consciousness of millions of people. Forever… But it’s only today that I understand it. Because back then I didn’t want to believe it… It seemed to me like a premiere of a strange and scary movie series… Or maybe it was just a dream that is about to end, and everything would be as before… But no… It was not a TV show or a dream; that was a real, horrible, and frightening truth – the war with russia began… And we did not know what to do when the air siren was howling… At first, we would all hide in the bathroom: me and Natalia, my deputy, and Larysa, our colleague and medical worker (her family had moved to our house in the morning of February 24), our elderly mothers, my husband… We were all searching for care mats for our children (who have severe disabilities and use wheelchairs) – Anton, my son, and Yulia, our colleague’s daughter – to cover their heads because the bathroom window panes could break because of explosions and wound them with glass fragments… From the first day of the war, we started going to bed dressed up. I would spend nights next to my son. He also went to bed in his clothes. Because we understood: if they start bombing, we would just have no time to dress up… I wouldn’t have enough time to dress him up, to get him in the wheelchair, and take him at least to the bathroom where we used to shelter then.”

What people with disabilities lacked very much on the first days of the war was information. And not only in Vinnytsia, but in many other parts of Ukraine, too. It is more correct to say that some information was there, but it was very versatile. And nobody knew how to use it. Svitlana Demko, her colleagues and friends did not know what actions to take, what to do and what not. Later they found out a bomb shelter near their building, but, as it turned out, the three big and steep staircases made that place inaccessible for people in wheelchairs and the elderly. In addition, there were no toilets and water there, but a lot of choking dust. So, Svitlana and her family went on sheltering in the bathroom, but she realized something has to be done.

“The first our step was to sit down and write down all the conditions that must be present in bomb shelters so that people with disabilities and the elderly could use them. We listed everything that such people need to wait out every air alarm. We sent all that information to the public organizations in our city and region; to all-Ukrainian and international disability organizations, and to the municipal and regional administrations. We would published everything on the Internet, we would raise attention, we tried to do something useful.”

That was only the first step. But it was made, and Svitlana, together with her “Open Hearts” Association, set out on a long journey of struggle. Some of the projects arranged before the war have stopped, and the others were re-designed and modified under the wartime conditions. Today Svitlana and the organization which she leads continue helping people with disabilities in both Vinnytsia region, and other regions, as well as they are thinking of how they can further help Ukraine and its citizens and make the lives of people with disabilities better, easier, and more accessible.

The National Assembly of People with Disabilities of Ukraine, jointly with the United Nations Women’s Fund for Peace and Humanitarian Aid, have supported the humanitarian mission of Svitlana Demko and the “Open Hearts” Association. We are proud of her and everyone who do not stand aside in these difficult and decisive time for Ukraine.

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The project “Enhancing the Leadership of Women with Disabilities in Gender-Oriented Humanitarian Responses in Ukraine” aims at strengthening the leadership and participation of women’s NGOs and networks of women with disability and women raising children with disabilities in gender-oriented humanitarian responses.

The United Nations Women’s Peace and Humanitarian Fund (WPHF) is a unified global financial mechanism designed exclusively to support the participation of women in peacebuilding and humanitarian responses. WPHF is a flexible and rapid financing tool supporting quality interventions to enhance the capacity of local women to prevent conflict, respond to crises and emergencies, and seize key peacebuilding opportunities. WPHF is an innovative partnership among its member states, the UN, and the civil society, with all the stakeholders represented in its global Financial Council.

Additional information on the UN Women’s Peace and Humanitarian Fund and its activities across the globe can be obtained on the Fund’s webpage: www.WPHFund.org and www.WPHFund.org/

Photos provided by the “Open Hearts” Association