A True Story About Facing Challenges
It was the Spring of 1998 when I met Ella Chugina, a young non-profit manager from Perm, Russia. Ella was selected along with 4 others from the region to participate in a U.S. Department of State training program[1] conducted by Legacy International. The program introduced the delegates to the operating methods of U.S. non-profits and also those that served individuals with diverse physical, mental, and emotional needs. Two members of the delegation also coped with challenges: Ella was born with cerebral palsy, and another member had diabetes.
As program director, I set up meetings with schools, government agencies, and local and national non-profit organizations to match the delegates’ needs. The program was designed so that each delegate would be able to adapt the techniques and approaches they had observed in the U.S. to meet the needs within their home communities in Perm. In addition, each delegate was hosted for a time in the home of a U.S. family. Ella, for example, stayed with a family whose child also had a disability.
Upon her return home, Ella, impressed with Rehabilitation Centers she witnessed in the U.S., began her work with a letter-writing campaign to regional and local authorities in Perm describing why such a Center was critical to the well-being of persons with disabilities. From these humble beginnings, with time and much effort and perseverance on her part, her efforts bore amazing fruit. When I visited Russia in 2004[2], I met up with Ella. She took me to a Rehabilitation Center, the first of its kind in her city, and one she had helped to create. The center had ramps for entry, provided medicines and therapies, and included semi-private rooms for those in need. I was very impressed that this young woman, who has both mobility and speech challenges, had the perseverance and will to fight for what she believed was a human right and accomplished her goal.
During these years, Ella continued to increase her knowledge and capabilities. She obtained a degree in social work, and then a degree in law. These certifications greatly facilitated the work of her non-profit organization “Golubka” (Dove). She was involved with the establishment of no fewer than 7 additional Rehabilitation Centers in the Perm region. Their clients included young people with congenital disabilities, children with motor disabilities, and people with injuries and strokes. Additionally, Golubka provided training to those with physical disabilities in computer programs, advocacy for the rights of disabled persons, and outings and trips for disabled people.
Ella said: “After the first Center, my personal contribution to the cause was purely administrative – I collected, analyzed and presented statistics on the need and demand for rehabilitation services among the disabled people in the Perm Region. The data served as a justification for the expansion of the regional budget for the construction and operation of new Centers.”
“Although I could not stand up for myself, when it comes to the interests of many people, I cannot be stopped. Sometimes, leaving the house at 10 in the morning, I returned at about 8 p.m. These were appointments for receptions, seminars, and public round-table hearings on social topics.”
Unfortunately, beginning in 2005, Russia and the Perm region in particular experienced a sharp decline of interest from relevant granting institutions in supporting people with disabilities. As a result, there was a decrease in financial support for NGOs in general and for disability organizations in particular. What became the norm was that winning grants were those that could support a large number of recipients at a lower cost, though potentially losing quality in the process. Golubka (Dove) was not able to compete and was forced to close in 2011.
Faced with what she felt was failure, Ella did not know where to turn and fell into a depression that lasted a year. She felt that her society and its institutions had turned its back on people with disabilities, and she could not find a way to support her organization and those it served.
“I felt empty and useless. And I began to degrade, first physically (for six months I couldn’t walk independently) and then mentally. I did not want [to do] anything, and I gained a lot of extra weight.”
Day after day, she sat by the window of her small apartment, watching passersby. One day, she saw a girl making her way down the sidewalk on a 3 wheeled apparatus, a tricycle. For the first time in months, she felt inspired. Here was something she knew she could physically manage! Here was a way to regain confidence, build strength, enjoy the outdoors, and especially serve others like herself.
“I instantly wanted to leave the house! And not just leave, but ride a trike on the streets of the city!”
And so a new and exciting chapter of her life began. She obtained her first trike, and using the skills she had developed in her non-profit, gathered together others with cerebral palsy to share her new discoveries. However, she quickly realized that the methods she had used with Golubka (using her own funds) were not nearly sufficient when highly specialized and expensive equipment was needed. Then she learned that tricycle racing was a Paralympic sport, and that government grants were potentially available to Paralympic athletes. Shortly, she submitted a proposal to the Ministry of Sports for the Perm Region and it was awarded to her. This enabled her to gather and train athletes to prepare to participate in Paralympic sports competitions at different levels.
However, obstacles remained. The trikes used in Paralympic competition needed to comply with International Cyclist Union (UCI) regulations. But ministry officials had no budget to fund the correct equipment. Once again, Ella responded to the challenge.
“I had to look for everything on my own – from technical documentation in English and working with designers-manufacturers-assemblers, and of course, private funding. However, I should say that over time (since 2017) there emerged a craftsman of the golden hands, who [now] makes custom trikes in Perm. After a year of hard work, I lost all the extra weight [I had gained.] However, independent walking and good balance did not return to me. Still, I was physically strengthened and was ready to show results on a brand-new trike.”
Six months later, she and the most prepared cyclists from the Perm group competed in their first local competition, winning silver and bronze medals. As of 2021, although she no longer competes, she does still advise the group on various issues.
I recently spoke with Ella and asked how her long-ago internship in the U.S. influenced her. She said:
“It was incredible! I ask myself how would this or that problem be solved by the leaders of those organizations that I visited? The experience I gained does not allow me to lower the bar, to be content with what I have in reach, but to always strive for the best, for the ideal, for what I once saw in the organizations of the state of Virginia.”
Ella and her husband, Andrei Zhuravlev (the previous head of another disability organization) are seeking to move to a warmer location where they can exercise outdoors and stay in shape year-round. The move is daunting: all of their pension funds and more will be needed to make an apartment accessible, with ramps, wider doorways, and counters at a manageable height, while still having enough funds coming in to maintain basic survival needs of food and water. Though the Russian Ministry of Social Development supports many people in need such as large families, homeless people, single mothers, prisoners with disabilities, and orphans (including children with disabilities), the majority are pensioners without disabilities. Unfortunately, there is no Russian institution that equips housing or provides support specifically for persons with disabilities.
Ella is a symbol of a life incredibly well-lived. How many of us with full use of speech and physical movement can claim to have accomplished as much? From what well spring does the inspiration, perseverance, empathy for others, and determination spring? Ella’s story is remarkable from the perspective of human accomplishment.
Legacy International hosted more than 400 individuals through its Business for Russia/Community Connections exchange programs, and thousands more were hosted across the U.S. I have longed believed that there is no replacement for first-hand experience to understand how effective democracies can be when care and compassion are the motivating factors for action. We have many challenges and problems in the U.S., and sharing the best while not hiding the worst is a foundation not only for maintaining good relationships among diverse countries and cultures, but a prerequisite for solving the problems we all share.
Marlene Ginsberg, Vice President, and a founding member of Legacy International, directed the BFR/CC programs gaining much about the cultures and people of the former Soviet Union.
[1] Legacy hosted 37 delegations of Russians, Ukrainians, and Central Asians from 1994 to 2015 through its “Business for Russia”(BFR) Program. As it expanded to other Former Soviet Union countries, its name changed to “Community Connections” (CC).
[2] I was in Perm on another Legacy program, adapting our LivingSidebySide® social cohesion and leadership curriculum to the Russian context.
