{"id":5358,"date":"2026-05-05T16:41:51","date_gmt":"2026-05-05T13:41:51","guid":{"rendered":"https:\/\/dzherelo.org.ua\/?post_type=articles&p=5358"},"modified":"2026-05-19T17:42:02","modified_gmt":"2026-05-19T14:42:02","slug":"love-must-be-resolute-and-active-yulia-boyko-on-how-parents-of-children-with-disabilities-are-changing-the-system-in-ukraine","status":"publish","type":"articles","link":"https:\/\/dzherelo.org.ua\/en\/articles\/love-must-be-resolute-and-active-yulia-boyko-on-how-parents-of-children-with-disabilities-are-changing-the-system-in-ukraine\/","title":{"rendered":"\u201cLove must be resolute and active,\u201d \u2014 Yulia Boyko on how parents of children with disabilities are changing the system in Ukraine"},"content":{"rendered":"\n

On May 5th, the International Day for the Rights of Persons with Disabilities, we talk about changes born from the experience of specific families. Yulia Boyko \u2014 mother of 16-year-old Marichka who has Down syndrome, a methodologist at the Home of Supported Living, and a coordinator for the creation of the Network of Parent Organizations \u2014 shares her personal and professional journey, civic activity, the power of the parent community, and why real change begins with love in action.<\/em><\/strong><\/p>\n\n\n\n

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\u2014 Yulia, please share what positive changes for people with disabilities and their families you already see in Ukraine?<\/strong><\/p>\n\n\n\n

\u2014 I will speak from two perspectives: as a mother and as a professional in this field. And I can say that there definitely are changes, and they are positive. If we compare it to the past, when there was much more segregation, today more and more decisions\u2014both at the legislative level and in practice\u2014are moving towards integration. This applies to education and the development of social services. At the same time, there remains a gap between what is declared and how it works in reality. For example, in Lviv, many processes are developing, there are already procedures, movement, and that is pleasing. But in other regions, we often see a different picture, where rights exist on paper and no one denies them, but in practice, there is a lack of services, children are not always accepted into inclusive education, and opportunities are not created. That is, formally everything is there, but practically it is not always realized.<\/p>\n\n\n\n

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\u201cA person with a disability must be perceived as an equal fellow citizen…\u201d<\/em><\/em><\/p>\n\n\n\n

\u2014 And what exactly is changing “too slowly” or hardly changing at all?<\/strong><\/p>\n\n\n\n

\u2014 I am probably an optimist, so I wouldn’t say it is “too slowly.” There are things that simply cannot change quickly. It’s about changing the worldview. Changes on paper are not enough, because the mindset must change. A person with a disability must be perceived as an equal fellow citizen who wants the same things as everyone else: to live, to develop, to have opportunities. Sometimes help is needed, but the key remains the right to a dignified life.<\/p>\n\n\n\n

There must be a transition from perceiving a person as an object of care to understanding them as an individual who makes decisions in their life, even if they need support. So far, very often, people look first at the disability, not the person. And this is exactly what is important to change. When we see the person first, and not their diagnosis, then the approaches change too. Then it’s not just about treatment or rehabilitation, but about the quality of life. Not about boarding schools, but about Homes of Supported Living, where a person can live fully. It’s about the opportunity to be among people and gain different experiences.<\/p>\n\n\n\n

\u201cFormally, no one in Ukraine denies the rights of people with disabilities… But are the conditions created to utilize these rights?\u201d<\/em><\/em><\/p>\n\n\n\n

\u2014 What do the “rights of people with disabilities” mean in the daily life of a family?<\/strong><\/p>\n\n\n\n

\u2014 For me, it’s very simple: it’s not just having a right, but having the opportunity to use it.<\/p>\n\n\n\n

Formally, no one in Ukraine denies the rights of people with disabilities to education, medical services, social services, or leisure. All these rights are secured, the Convention has been signed, and there are many laws. But the question is different: are the conditions created for these rights to work?<\/p>\n\n\n\n

For example, my daughter has the right to inclusive education, as stipulated by law, and she is studying in an inclusive educational format. But for this right to be fully realized, the school must adapt the environment and programs, and provide support to teachers. That is, it’s not enough to say: “you can come.” It is necessary to make this opportunity real. And this is exactly what rights mean to me \u2014 when there is not only a declaration but also conditions for their implementation in life.<\/p>\n\n\n\n

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\u201cQuality changes require systemic work\u201d<\/em><\/p>\n\n\n\n

\u2014 What single step by the state today could change the situation the most?<\/strong><\/p>\n\n\n\n

\u2014 I don’t think there is any single step that can radically change everything. Quality changes don’t require a “magic pill,” but systemic work. In general, many things are well-written at the legislative level in our country. But the key issue is their implementation. I can’t say exactly how it should work, because I am neither a legislator nor a lawyer. But it is obvious that there is a lack of implementation mechanisms. Because the rights exist, but how to use them in practice is a more complex question.<\/p>\n\n\n\n

This is especially noticeable in communities with smaller budgets. After all, a child with a disability has the same rights in a large city as in a small village. But the opportunities are different. And this is where the state must find solutions on how to equalize these opportunities. That’s why I don’t see one specific step. It has to be systemic work. And another very important aspect is the perspective of the decision-makers. They must be involved in the subject and have empathy. Because this field cannot just be about calculation \u2014 it must have a heart.<\/p>\n\n\n\n

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\u201cI cannot change the fact that my daughter has Down syndrome, but I can change my attitude…\u201d<\/em><\/em><\/p>\n\n\n\n

\u2014 When did your civic activity begin and what was the first step toward active participation?<\/strong><\/p>\n\n\n\n

\u2014 I entered civic activity gradually. It all started with the birth of my daughter. I am a mother to my daughter Marichka, who has a disability. I immediately understood that it was not enough just to “save” or rehabilitate the child. I had to help myself, too. Because if I want my daughter to be happy, I also have to be happy and have the inner resources to care for her. I started looking for support from other parents and that’s how I came to the Dzherelo Centre. There was already a public organization there, and I joined it. At first, I just attended various events, seminars, and meetings. And gradually I started sharing my own experience. And so, step by step, it grew into active engagement. I realized that I couldn’t change the fact that my daughter has Down syndrome \u2014 that’s for life. But I can change my attitude and do everything to ensure she lives with dignity. Maybe I will succeed, maybe not, but I choose to act, not just give up. Although, of course, there are moments when I cry.<\/p>\n\n\n\n

My stance is that love must be resolute and active<\/strong>. And for me, this means that love is in action, in the readiness to step over fear, sometimes over an “I can’t,” and over doubts.<\/p>\n\n\n\n

\u2014 You mentioned the public organization at the Dzherelo Centre. What was your interaction with this community like in the beginning?<\/strong> <\/p>\n\n\n\n

\u2014 It was the “Parents of Dzherelo” organization, now it is called “Spread Wings.” I simply became a member because these were parents just like me. The community gave a sense of solidarity. When you have lived through your own story, you can support those who are just at the beginning of this path. I remember many people who were nearby back then. They were already in the organization, and I joined them. We had very different formats in our activities: from joint celebrations to meetings and training sessions. There were seminars, specifically with the participation of foreign specialists. They told us how interaction with authorities works in other countries. And I tried to get involved wherever I could.<\/p>\n\n\n\n

Later, the organization transformed, and we started working more not only within the Dzherelo Centre but also on broader issues, including the development of inclusion and many other new initiatives.<\/p>\n\n\n\n

In parallel, I began working in the social sphere: first in inclusion at a preschool facility, then at UCU, where I worked with people with disabilities. Now I work at the Dzherelo Centre as a methodologist at the Home of Supported Living. And so it became a part of my life \u2014 both professional and civic. Honestly, sometimes it’s even hard to separate where one ends and the other begins.<\/p>\n\n\n\n

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\u201cFor me, it is fundamental: that with the birth of a daughter with a disability, my life path didn’t change its direction, but rather expanded\u201d<\/em><\/em><\/p>\n\n\n\n

\u2014 What helps you not to burn out as a professional, as a civic activist, and as a mother?<\/strong><\/p>\n\n\n\n

\u2014 Probably, first and foremost \u2014 it’s my daughter. She is my motivation. There are moments when you want to leave everything, but a little time passes and you realize that you can’t. Because she is there. Of course, there are moments of disappointment \u2014 it’s a normal part of this work. Not everything always works out, there are difficulties and challenges. And perhaps, sometimes I would have given up, but what keeps me going is that I love what I do. I truly enjoy my work. Yes, there is fatigue, it can be hard, but this love helps me not to stop. When you reach a “dead end,” you don’t retreat, but start looking for solutions. This is especially felt when working on new projects \u2014 for example, on the creation of the Home of Supported Living. It’s difficult because it’s new, but at the same time, it’s very inspiring.<\/p>\n\n\n\n

\u2014 What else supports you and gives you the strength to move forward?<\/strong><\/p>\n\n\n\n

\u2014 Very simple things. It is important to remember what you love and not to lose yourself. For me, it is fundamental: that with the birth of a daughter with a disability, my life path didn’t change its direction, but rather expanded. I retained much of the life I had before motherhood: friends, interests, the things I love. And at the same time, something new appeared \u2014 new people, experiences, work. It is important for me to remember who I am.<\/p>\n\n\n\n

The people around me are very supportive \u2014 like-minded individuals, the environment. And another important thing is seeing results. When you see that changes are happening, that people are moving, that something is emerging \u2014 it gives you strength. For example, one of the projects \u2014 the Home of Supported Living at 39 Pasichna Street in Lviv, which we are working on, started even before the war \u2014 around 2019. Back then, it was just conversations. And now it has been realized. And you see that this is the result of invested efforts. There is no feeling of standing still. It’s more like a river: somewhere faster, somewhere slower, but it’s moving. And that is very inspiring.<\/p>\n\n\n\n

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\u2014 What brings you joy in daily life?<\/strong><\/p>\n\n\n\n

\u2014 Very simple things. Good music. For example, just yesterday I turned on some loud music that I have always loved \u2014 and I felt great. Also, interacting with my daughter, meeting people, seeing what I talked about, seeing some successes. A good book. I love learning \u2014 it brings me joy. By the way, I am also very moved by kind stories. I am inspired by them.<\/p>\n\n\n\n

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\u201cThe Network of Parent Organizations is a place of power where we can support each other and speak about important things together as a community\u201d<\/em><\/em><\/p>\n\n\n\n

\u2014 In the context of our conversation, you mentioned the Network of Parent Organizations. What is this initiative and what does it do?<\/strong><\/p>\n\n\n\n

\u2014 I told my story, but in reality, in every corner of Ukraine, there are parents just like me raising children with disabilities and facing their own challenges. Families with children with disabilities encounter a STOP sign at different stages of life. For some, it happens later \u2014 for example, after finishing school, when the question arises: what’s next? And for others, this STOP appears from the very beginning: there is no early intervention, the child is born, and the question immediately arises: what to do, where to go, how to deal with inclusion? It’s different for everyone. But there are always parents who do not want to put up with this. And not just refuse to put up with it, but take action \u2014 declare their needs, look for solutions. This is how public organizations created by parents themselves emerge.<\/p>\n\n\n\n

\u2014 What does this Network do?<\/strong><\/p>\n\n\n\n

\u2014 First and foremost, it promotes the protection of the rights of people with disabilities and their families through advocacy campaigns for the implementation of quality social services, education, and healthcare, with the goal of improving their standard of living.<\/p>\n\n\n\n

\u2014 How did the idea to unite these organizations into a single Network come about?<\/strong><\/p>\n\n\n\n

\u2014 There are many such organizations in Ukraine. And at a certain point, we at the Dzherelo Centre started talking about how the voice of parents must be heard. In parallel with this came UNICEF. There was an understanding that you cannot create policies or services for people with disabilities without hearing the parents themselves. Because there are those who write the laws, and then there is us \u2014 the ones who live with these decisions every day. And we can clearly say that this works, and this doesn’t work, and this is what’s missing. That is why we started a joint project \u2014 between UNICEF and the Dzherelo Centre \u2014 which would unite such organizations and amplify the voice of parents. Initially, it was training for leaders of parent organizations from all over Ukraine: how to communicate, how to write grants, how to interact with authorities… And then the idea emerged: to unite into a network. Not just to train, but to create a sustainable, legally formalized community.<\/p>\n\n\n\n

\u2014 How does this Network work today?<\/strong><\/p>\n\n\n\n

\u2014 Initially, 16 organizations joined the network. Now it has expanded significantly \u2014 there are already about 40 organizations from different regions of Ukraine. The Network operates on two levels.<\/p>\n\n\n\n

On the one hand, there is the national level. We monitor changes in legislation, react to them, sign appeals, raise important issues, and unite with other initiatives. On the other hand, each organization remains active in its own community. Each has its own activities: support groups for parents, the creation of services, and cooperation with local authorities. But together, we have a stronger voice. We can support each other in difficult situations, and simply on a human level.<\/p>\n\n\n\n

\u2014 What does the Network of Organizations mean to you personally?<\/strong><\/p>\n\n\n\n

\u2014 I would say it is a place of power. A place where we can support each other and speak about important things together as a community. There is a nice metaphor: “not just a single twig, but an entire broom.” Together we can clearly state what we agree with, what we don’t, what we need, and what we don’t.<\/p>\n\n\n\n

\u2014 What was your role in creating the Network?<\/strong><\/p>\n\n\n\n

\u2014 Our parent organization “Spread Wings” joined the Network. I was the creation coordinator from the Dzherelo Centre. UNICEF provided funding, and we organized the entire process: strategic sessions, meetings, trips, training \u2014 everything needed for this Network to be formed. Effectively, we coordinated this process from the beginning through to its creation and operation.<\/p>\n\n\n\n

You can familiarize yourself with the activities of the Network of Parent Organizations on its Facebook page.<\/a><\/p>\n\n\n\n

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\u201cLove must be resolute and active,\u201d says Yulia Boyko. And it is precisely this kind of love that is changing the system today, step by step, story by story. The path to equal rights for every person is daily joint work, in which the voice of parents becomes the engine of change.<\/p>\n\n\n\n

\u2014 Thank you for the conversation!<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"

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