Cerebral Palsy - CP - three scary letters that just a few years ago meant a closed future for someone with this condition. The absence of ramps and elevators, streets that weren't adapted, the inability to properly rehabilitate children and implement early interventions - all of these factors virtually destroyed any chances of a happy and emotionally fulfilling life for families raising children with disabilities. Cerebral palsy is a condition that takes away the ability to control one's body, but the vast majority of people with this condition have preserved cognitive abilities.
In recent years, attitudes towards people with CP and other forms of disabilities have undergone a profound transformation. Government institutions equip their premises for easy wheelchair access, artists portray people with disabilities in their works, and educators undergo courses on inclusivity and communication with students.
Viktoriya Panasyuk, the head of Rotary projects, a mother of a boy with CP, a marketing professional, and the founder of the well-known social project "Special," has made a significant contribution to these changes. Currently, Viktoriya is one of the mentors for the "Barrier-Free State" course by Diia.Digital Education, a practical course instructor at the Higher School of Public Administration, and a coach for organizational development in the social sphere, as well as a financial and career consultant.
Every week, she conducts dozens of high-level negotiations on behalf of people with disabilities in Ukraine. Viktoriya shared her journey and insights about the future in the "Women. Inclusion. War" project by the NGO "EpiProsvita" for RBK-Ukraine. Here are her words:
"Once upon a time, I had a life without the word 'disability.'
Sixteen years ago, I knew nothing about disabilities. I worked with a big business, specifically as the Commercial Director of a construction company. Then Egor was born. No one expected his illness. For almost a year, my husband and I didn't talk about it. We were figuring out what was happening on our own and, as a result, lost precious time for early intervention.
I believe that the silence about the potential developmental issues of a child is one of the significant social problems in Ukraine. We don't talk about the fact that healthy parents can have children with cerebral palsy. Consequently, parents can't prepare themselves and run around in confusion. As a result, the child suffers."
I remember how 12 years ago I first publicly addressed this issue before a group of specialists in Kyiv. At that time, I raised the issue that there was virtually no opportunity for early intervention in children, which has a tremendous impact on reducing the consequences of cerebral palsy (CP). Unfortunately, such intervention still doesn't exist. CP is a lifelong journey. What helped me greatly on this path was that my acceptance stage for Egor came very quickly. I realized that my first task was to help my son adapt to the world around him, make the environment conducive to his development and mobility.
During the war, we are doing more for people with disabilities than in all the previous years combined.
Being part of the process of creating accessibility in Ukraine, I see how inclusion is being implemented during the war. Only this year, 360 events are planned to implement the National Strategy for Accessibility, involving 15 ministries, and, finally, the policy of early intervention has been included. As the mother of a 16-year-old boy, I am now concerned about what will happen to people with disabilities aged 18+?
Recently, I had a partnership meeting with the initiators of the creation of the Inclusive Learning and Employment Center (ILEC). In ILEC, people with disabilities are supposed to acquire additional skills for work and receive assistance in employment and job support. I will see how I can contribute and be useful. It is very important for me that my son feels happy and dignified, so questions about his further development and life are a priority.
Egor attends the "Nadiya" special school. This year, he transitioned to the mainstream program and will be studying in the 11th grade, just like all the other children. I believe this is our joint victory, achieved with the help of teachers and specialists. It all started with homeschooling when a teacher came to Egor, and it was completely unclear how to communicate with a child who doesn't sit, doesn't move independently, doesn't use his hands, and doesn't speak. But everything fell into place, and over time, we started going to school once a week, and now Egor is studying at the school's base every day. It's a real breakthrough.
It so happened that just when Egor started school, the reform of the boarding school system began. Thanks to the efforts of parents, teachers, and administrators, we were able to transform the special school from two groups in a kindergarten into a fully equipped facility with a gym, cafeteria, and workshops.
What surprised me the most at that time was not just the year-long struggle to defend the rights of children with disabilities at various levels, emphasizing the importance of daily presence and education, rather than keeping children in boarding institutions on a permanent basis. There were parents who wanted their children to stay in institutions around the clock.
We did a lot of work to show and prove that a child should return home every day, receive parental care, support, and love. Only in this way can they develop and succeed.
Our children have been caught in the gears of change.
Comparing the situation 16 years ago with today, I see positive changes in the attitude towards and adherence to the rights of people with disabilities. However, we are still far from even a satisfactory state in the social sphere.
Consider, for example, the provision of rehabilitation equipment services. In reality, it is provided at best based on a one-size-fits-all approach. This leads to a multitude of problems, such as incorrect posture and internal organ deformities, which hinder a person's ability to move independently.
In reality, occupational therapists and service providers should be involved, tailoring equipment to individual needs, adjusting it as a person grows and their rehabilitation progresses by changing the settings.
The same can be said about the rehabilitation system, which is only now, in this year, aligning with global trends. For instance, we are finally moving away from treating CP with massages and electrotherapy because it's nonsense and transitioning to evidence-based medicine.
Inclusion during wartime: How a mother of a boy with CP creates social projects.
During the "early intervention" period, we used to travel abroad for rehabilitation. That's where Egor took his first steps, but his body wasn't ready. We thought it was, but it turned out not to be. These intensive treatments led to a deterioration in his physical condition, but at the same time, we realized what results our son could achieve over these years if he had access to all the necessary specialists and a well-structured system of individual rehabilitation.
And what about freedom of movement? To take the subway, you have to call in advance to let the metro staff know when you plan to be there so they can meet and assist you. It's impossible to imagine just walking into the subway and getting to your desired destination in Kyiv. All of this significantly lowers the self-esteem of people with disabilities, making them feel helpless and dependent. It shouldn't be like this.
"Special"
While going through this journey to help my child, I started assisting other families raising children with disabilities. This led to the creation of a community and later the social project "Special," which aims to socialize and improve the quality of life for children, youth, people with disabilities, and their families.
The main goal of the project is that by opening up the world for our children with disabilities, we open the world to children, people with disabilities, and society as a whole. This is true inclusion. Visits to theaters, museums, exhibitions, organizing educational and informative events, workshops, and systematic courses enable direct communication between different people and foster synergy and development.
I remember once a little girl asked me, "Why is such a big boy in a wheelchair?" I replied that Egor is still learning to walk, but he goes to school and loves playing with a ball. So, if she would let him play with the ball a little, he would be very happy. The girl understood everything without trauma, fear, or tears.
War requires us to adapt and optimize our communication skills more quickly. We already know about 27,000 military personnel with disabilities. How many more have not been identified? How many people have been affected by the conflict? Speaking of overall numbers in Ukraine, in 2022, there were 2.7 million people with disabilities, including 165,000 children.
It's clear that the war has caused migration, but we understand that the general trend regarding people with disabilities remains, and they will always be a significant part of society. We should communicate with them while upholding the fundamental principle of "first the person, their dignity, and then their disability."
Invisible Mothers
This is my worst nightmare. I cannot imagine my life without self-realization. I learn every day, have acquired several new specialties, and constantly strive to improve myself. Right now, I'm taking a course in rehabilitation facility management. But it's not about me alone; it's about everyone.
I often meet mothers who have been forced to live their lives instead of their children. They have become caregivers, drivers, teachers, guards, caregivers, and educators due to the lack of service systems for their children with disabilities. In essence, mothers should provide love and care to their children, not be everything for them.
Parents have simply been robbed of the opportunity for self-realization and their own lives. I cannot accept that. I understand that one day my child will live without me. I try to take care of those times already.
This has motivated me to learn financial consulting, and it has fascinated me so much that I'm currently consulting and developing a private practice. At the same time, I'm exploring investments and other opportunities to create passive income that will secure Egor's future. I'm thinking about his guardians and other complex issues. I really want to create several educational courses for mothers so they can step out of the shadows and stop being invisible.
In the near future, I plan to create more social projects, make them even more extensive, and change the landscape of inclusivity in Ukraine.
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