War Challenges for People with Disabilities

18 Липня 2022 by Olga Zhurbenko

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The National Assembly of People with Disabilities in Ukraine (NAPD) is implementing the project “The Crisis in Ukraine: Disability-oriented Response and Renovation.” In its framework, the representatives of NGOs from various regions of Ukraine are sharing their experience they have obtained since the first days of the full-scale invasion of russia in Ukraine’s territory.

Zhytomyr region does not stand aside either. The activities of Zhytomyr regional public organization “Youth. Woman. Family” (NAPD’s member-organization) helped to hold interviews with four residents of the region. These interviews were prepared in a creative way by selecting respondents with various nosology groups.

So, what impact does the war have on the lives of people with disabilities? Here is a story from Viktoria Shevchuk, a visually-impaired woman with Disability group 1, who is looking after her dementia-suffering mother.

On the first days of the war, it was frightening. I felt responsible for myself, for my mom, for our dog. It was horrible just to go anywhere, and I was trying to stay near my mother all the time. I did shopping in the nearest store. Luckily, all the necessary stuff was available there. When it got warmer, I would walk out with my mom always with me, so that if an air alarm was announced, we would go to a shelter straight away.

It was terrible to hear the first sirens. Today I understand the system a little better, and I already know that not all air alarms are equally dangerous as we felt during the first months of the war. Yes, at the beginning many rockets and shells flew over Zhytomyr and it was incredibly scary. Now it is quieter. In the first two weeks, I was drinking sedative drugs all the time, as I was nervous, and those alarm sirens kept ringing in my head. I even developed an upset stomach: a siren starts, and I go to the toilet at once. It was good I had the necessary drugs at home, which helped me survive, and later I got used to it and upset stomach passed away. When the very first air raid was on, my mom was walking the dog and I had to go and search for them. Then I was afraid to let my mom leave home, so I took her keys and forbade her to go out. In February and March, we went for a shelter to the basement, so it was necessary to quickly pack up myself, my mother, take the dog, and walk underground. I prepared a clear list of actions: an air alarm – I put on my shoes, I tell my mom to get dressed; then I check gas, water, electricity, and how my mom is dressed (since she could have forgotten to put on her shoes or her warm sweatshirt), take the dog on a leash, and we leave. In several days, I was already able to gather so quickly that I was the first to enter the basement. Thanks to such a complete systemic approach, I had a very clear idea what should be done and after what. You know, a person can get used to everything. Even my mother with her dementia knows that we have a war. Now the military troops moved away, and when an air alarm іs announced, we stay in our corridor. But hearing an air alarm sound, my mother asks: “Where should we run?” When we stayed in the basement, my mother was silent for 20-30 minutes, but in an hour and half or so she would forget we were in the basement and start getting ready to go back home. It was necessary to explain to her everything from the start. These days, if we sit in the corridor for long, she persistently wants to go back to her room and go to sleep.

From the very beginning, I realized that my mother suffers from dementia, and it may create additional problems. She knows where things are in Zhytomyr, but going to another city would be problematic for her. Not to mention how difficult it would be abroad because she doesn’t know a foreign language, and if she gets lost, what will she do? My sisters insisted on us leaving as they couldn’t evacuate without me and the mom. So, we tried going to our friends in Rivne region, where we stayed no longer than … one day. In a strange house, my mother started rummaging in the wardrobes while I was walking the dog. Then she didn’t like something on the street, so she turned around and walked into the farmer’s field, saying: “I’m going home.” I got embarrassed in front of other people, as they don’t deserve to see something like that all the time. The sedative drug had no effect on my mom, and she didn’t have a sleep on our way back to Zhytomyr, although the drive through all the military checkpoints was long. My decision to stay at home proved to be correct, as my mother calmed down, felt better and calmly went downstairs to the basement.

Talking about medical drugs, on February 24 I was able to buy my eye drops, but there were no pills for high pressure and upset stomach symptoms. Also, I managed to withdraw cash using an ATM. By the way, when the war started, people became more attentive and let me use the ATM and pharmacy without waiting in line. My mother’s special drugs got much more expensive in the wartime, and the choice of my eyedrops got smaller, but the price higher. In general, the cost of the medical drugs we need has risen by 50-100 hryvnias. Food products became more expensive too, especially after the petrol crisis. It was good I had had my medical treatment before the war, and my mother receives medication on an established basis, so we didn’t have to see a doctor.

I am thinking about what to do next. The first months I didn’t want to talk to anyone, and I closed myself off, but now I’ve got a little used to the situation and I communicate more. I am following the news in the Telegram all the time, although it sometimes takes a lot of time. I learned to find some solace in cleaning our apartment and I decided to throw away all the junk stuff. As the experience from the beginning of the war proves, you can get by with just two sets of clothes for change. And each person has things kept for a “special occasion”. The war revealed that they are simply a hindrance, especially when you need to pack up the most necessary things quickly. I came to the conclusion – at home you need to keep only the necessary things.

I work in a museum in Kyiv, and summer is the dead season for us, but to get to work has become twice more expensive. For a long time, I had wanted to learn how to do massage, so I joined a massage course at Zhytomyr Medical Institute. The war had postponed this training, but then, in spring, the meetings in our course group renewed and I received a Course Certificate on the 1^st of July. I am planning to work in this field.

Svitlana Shysh, mother of a son with disability since childhood (infant cerebral palsy)

At first, I was worried, but I didn’t have free time for being afraid because I had taken my two sisters and my blind mother to our house. Eight people were dwelling in the house, and being the host, I had to take care of everyone, to feed them, to distribute the food.

We live in the city center, not far from Zhytomyr lyceum No.25. When it was bombed, we were very stressed. We were lucky that a day before the shelling we managed to evacuate my sister with her children abroad. She was incredibly worried, and she had a very high stress and even panic attacks. I didn’t notice my son Vania to suffer such a strong stress, and his reactions to air alarms are quieter, although the boy is only fifteen years old, and his diagnosis is infant cerebral palsy. We live in a cottage, and there is a swing in the yard. My son adores swinging on it. But during the first ten days of the war he never went outside. Why so – I don’t know. My sister who had panic attacks also offered to evacuate together. I refused because, knowing my state and the state of my son, I didn’t think it was so urgently needed. I told her: “Vania is not worries, he does not urinate under himself, and I don’t have anything of this kind of stress myself. So, you go, and I will stay at home with my mom and the boys.”

Talking about our health state, at first, we had insomnia, and personally I could “fall down” only out of big tiredness. I was constantly following the news, but then started to keep a distance from it because morally it was too hard. Now I am feeling some tension as well, but less: I started to go to work again, and we also have our small summer house [“dacha”, in Ukrainian] and household chores. I don’t know if I can stand it and how long I can keep up this pace. Together with our family members, we’ve loaded ourselves with work in order to be distracted and not to be thinking about the war all the time.

We went to see a doctor only once – it was a planned visit, since I’d started dental treatment before the war. My dentist remained in Ukraine and continued to see her patients. She said, “If everyone leaves, who will treat sick people?”

To distract myself from the ongoing events, since the beginning of the war I was visiting a volunteer center to help distribute clothes and food. It helped a lot. Household chores also brought some distraction, and later I was called back to work. I work in a kindergarten. Parents in Zhytomyr work for various companies which support everyday functioning of the city, and their babies need good care. I have a group of children who are 3-4 years old, and they began to cry now much more often, they sleep restlessly, and if an air siren sounds, they wake up at once and begin to dress quickly. We walk to the shelter together. At work, I have to stay in a bomb shelter because I am responsible for the lives and health of the kindergarten children. At home, in our yard, we have a cellar, but we have never used it as a bomb shelter during all this time.

You are asking about getting assistance? Actually, it was me who, as a civil activist, has helped other moms: I have a group in Viber where we communicate, and other women write about their needs. In the Facebook, I am following what volunteers are doing what. Jointly with Nelia Kovaliuk from Zhytomyr regional NGO “Woman. Youth. Family”, we were searching for medical drugs (to address a problem with specific medications, especially for epilepsy) and big-sized diapers for bedridden children. Later they started to evacuate such children, so the problem became less acute. Gradually, our life is sorting out and we are getting used to the new realities.

Talking about my son, Vania had online education in his school. Also, he is finishing the “SHAG” [“STEP”] Academy, which he attends twice a week. Together with his class peers, he celebrated the 9^th Grade graduation at school: they went out for a picnic and then celebration continued at our house, since we have nice conditions for children’s holidays – there is a swing, a trampoline, a hammock, and a swimming pool.

What are our plans for future? I have a summer cottage with twelve acres of land, and this year we have planted it entirely because it is not known what situation we’ll have with food products and prices. Plus, there is some land near our older house in Zhytomyr, where I’ve planted many tomatoes and now I’m waiting for a harvest. The land needs care, for instance, our strawberries have ripened, and we go picking them every weekend. We ask our elder son to give us a ride in his electric car since petrol has become very expensive.

Following the topic of prices, the money we’re getting now is enough to pay for utilities and food products only. My husband’s work has shrunk, and so has his earnings. Still, we are cope with that and keep working.

 Liudmyla Klymenko, a sign language interpreter for the Ukrainian Society of the Deaf, who looks after her mother with Disability Group 1, who is unable to walk and hear

At the very beginning, it was very complicated. We live on the fifth floor, and our building has no elevator. I thought we could arrange for evacuation, but we don’t have a wheelchair, and it was necessary to hire somebody to take my mother to “Yalynka”, the final stop in Zhytomyr, to board a bus going towards the state border. At that time, very many Zhytomyr residents were going out, but I didn’t ask anyone for help although there were people I could ask. My mom said, “Liuda, you don’t lift me anywhere, because it’s hard for me and very painful.” My mother is of elderly age, and she has been ill for a long time, so there was no sense to disturb her by moving and transporting anywhere. And even if we ask someone for care, that person has to know sign language. So, I stayed in Zhytomyr near my mother.

I didn’t leave our home the first weeks at all. We ate the food we had in our apartment. We were scared because the air alarm was shouting all the time and we didn’t know how long bombing would last. We could hear explosions from “Kyiv-Zhytomyr” highway very well and bombing and shelling were near us. It was horrible. Air alarm, and I am pulling my mother on my arms and shoulders to the corridor, where I cover her with warm clothes or a blanket, and so we wait until the alarm is over. So did it last for more than a month and a half. Gradually I began going out to buy some bread and milk.

We lived through a big stress. It’s easier for my mother as she can’t hear air alarm sirens, yet the question “What is going to happen?” is still there. It was good that about a month and a half later they started to turn on air alarm signals on TV and show programs with sign language translation. We had also panic attacks. The mother could plead to leave her alone or carry her to the hall or bathroom. She often said, “Liuda, what would I do without you?” Honestly speaking, I don’t know either, because my mother can’t hear and can’t walk. We’d both take sedative drugs at first, but not every drugstore was open. That’s why, first you had to find the needed medicines. At home, we had some valerian and motherwort drops. The blood pressure was jumping violently. We are taking sedatives up to now. In general, our health state has seriously got worse. Permanent distress, and we couldn’t sleep at night and kept our clothes on all the time. Horrible! We contacted our doctor at a distance. My mother has the diagnosis of rheumatoid arthritis, and medications for her treatment must be taken all the time, including hormonal drugs. However, all the drugs have become more expensive, and my mother had to reduce the doses. That is, now it is only one pill in the morning instead of two pills needed in the morning and two pills in the lunchtime. But if we have enough drugs, I give her more. Even before, when the doctor prescribed free drugs, I always had to buy some additional amount, because my mother needs three-fours packs a month, and the doctor’s prescription allowed us to have only one pack for free. In the wartime, there is no free access to the mother’s medications, and I have to buy everything. Each pack of pills costs about 300 hryvnias, and you also need some painkillers and ointments. We use the ointments to smear my mother’s legs and arms, so that she could sit, hold a spoon and a cup on her own.

Talking about finances, my mother receives a pension and I have a job. They doensized some staff at my job, but they didn’t make me redundant because they understand the difficult situation in my family. Officially, it’s been the second month since I renewed my work duties, although before I was also occasionally called to work to help. The young people who were evacuating with their families needed help when crossing the border. We are staying connected through Viber and WhatsApp applications. Now I am helping retired people because they need to be organized, explained the information, and told how to behave in this or that situation. The importance of such explanations was coming to our understanding gradually, but at the beginning of the war everyone was simply shocked. My work has saved me, and I pulled myself together. We have almost no sign language interpreters at all because many of them have gone abroad. Also, displaced people were coming to Zhytomyr and they really needed my help.

How do I combine my work and my mother? I get up in the morning, help her to get up. Then I cook food and work remotely. When I have everything ready, I leave my mother alone and hurry to work. I leave her with a thermos of hot tea and something tasty. After work, I continue looking after her. My mother has a special bucket near her which she can use as her toilet. We have diapers, too, but she tries to do without. I say to her, “Mom, I go to work. I understand that you are ill, but we must hold on.” And she understands. Although the first days when I was leaving, she was very scared to stay alone, and attacks of hysteria also happened. Also, she has two blankets at her side, and when airs alarm is announced, she covers herself with them. The door to the apartment is open, and I ask our neighbours to come in and have a look at her when the alarm is over.

My work and communication are helping me to keep going. Although at first we could not speak at all. You didn’t want to phone or ask – absolutely nothing. Only shock. Then, bit by bit, we started to exchange text messages and make phone talks. When the war just began, I could only notice what time it was, but I lost track of the days and I didn’t know what date or day of the week it was. That’s how it was. Now I’m thinking and planning more about what needs to be done and how to do it better. We must support and help each other. Live here and now.

Yurii Baryshev, on a wheelchair

Psychologically, it was horrible at the beginning of the hostilities. Military jets and rockets were flying around, and there was a stream of unclear information and the question: “Will Ukraine exist at all?” The first two-three days I sat at home and didn’t go out, I watched TV, and I was about to go out of mind. That’s why, jointly with our neighbours where we live in the suburbs of Zhytomyr, we grouped together and started to help our men at the road checkpoints with food. I have a scooter and I was delivering the cooked meals, so that others had less work to do. I helped others in what I could to distract myself. In the evening, I came home and went to bed. This way I regulated my psychological state as I would be less occupied with the ongoing events. But still I had mental mood swings: from “Our men are great” to a state of apathy, but in several weeks my condition got better again. Now I do not have such dramatic mood changes anymore, because the shifts between physical and psychological activities have helped. Recently, my new work has been saving me.

In March, rockets were flying over our heads, and their fragments would fall on the road. My neighbours who work at the service station picked up those wreckage parts. Also, a rocket “arrival” happened close to my house, just some 300-400 meters away from it, where a military school is located. We could hear it very well, although the windows didn’t shatter. The first two or three days, my wife and I would run to our garage, which is made of brick. However, it was clear that a garage will not save you if a direct hit happens. There is a bomb shelter in our district, but it is not accessible to people on wheelchairs. The only safe place accessible to me is the underground passage near Zhytomyr stocking factory (he laughs sadly), but it takes me an hour to get there… The Vsesvit school, where I worked as a psychologist before the war, has a bomb shelter for students, but I cannot use it. Especially when last month about fifteen children of primary school age whose parents stayed in the city were taken there for a shelter.

I did not leave Zhytomyr because it wasn’t needed. Here I have a comfortable house. I understood that if I had moved away, nobody knew what conditions I would have got into. And abroad nobody needs us anyway. I would evacuate only in a hopeless situation – if our house is bombed out, like it happened to my friends in Kramatorsk, who do not have a place to come back in Ukraine now. That is a problem for people indeed! But in Zhytomyr, I can care for myself on my own, I am responsible for myself and I don’t create any extra difficulties to anyone.

Now it seems it has become a little easier, but it is unknown what’s next, how long the war will last and how we’ll live after it. I have a new job, that is, in financial terms it is more or less stable, but what will be next is not clear. Before the war, I worked as a psychologist, and now I work as a hotline operator. Many international organizations, including the UN, are helping people. There is a project for assistance payments where I’m working, too, giving consultations to internally displaced persons on how they can get aid or explaining to people why the funds haven’t reached them yet. I am communicating with the whole Ukraine.

In the wartime, the possibilities for moving around have become limited: the curfew, complicated exits from the city, and the lack of fuel. I have a car, but I go out of the city only when it’s really necessary. Fuel prices have got higher, and there are long lines of drivers to buy it at gas stations. Moreover, a person with a disability cannot walk and pay by oneself for the fuel, so you have to ask someone. It is uneasy to distract my friends for a long time during their worktime to help me just fill my car. I had a reserve of petrol before the war, but it is running out and soon I’ll have to go to a gas station. I hope soon there won’t be any long lines at gas stations, and I will be able to refuel faster. Also, communication has become limited. In general, people of our kind sit more at home, mostly getting in touch on the phone. Yet, since the start of my job as a “hotline” operator I’ve wanted to have more rest in the evening.

Since the war started, I haven’t gone to a doctor, except for a planned consultation on the phone when I needed an electronic prescription for hypertension drugs. I know that hygiene products were distributed, but I didn’t take them. Two months ago my wife went for a consultation in a hospital, and it was no problem.

At the end of our talk, Yurii shared a psychologist’s tip on how to get out of a state of stress in these extremely difficult times. “You need to carry out everyday activities and pay less attention to the news. If there is an opportunity, do socially useful work. If you feel stressed, change the form of your activity from physical to intellectual one and vice versa,” Yurii Baryshev advised.

On its part, the National Assembly of People with Disabilities in Ukraine is thankful to the members of Zhytomyr regional public organization “Youth. Woman. Family” and Nelia Kovaliuk, its head, for their tireless and multidimensional work in helping people with disabilities in Zhytomyr city and region. Since the start of active hostilities, this organization has been supporting people with disabilities with kind words, advice, and actions. They helped to deliver the needed medical drugs, hygiene products, and food. This NGO has actively joined the project implementation. We can add that the conducted survey has revealed that the Ukrainian society was absolutely not ready for the challenges of war: from the lack of necessary drugs and possibilities to arrange suitable evacuation of people with disabilities up to the creation of bomb shelters for people on wheelchairs.

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This material was prepared in the framework of the project “The Crisis in Ukraine: Disability-oriented Response and Renovation”, which is being implemented by the National Assembly of People with Disabilities in Ukraine (NAPD) and the European Disability Forum (EDF).