Building Disabled Women's Skills and Leadership in Uzbekistan
By Kate Beck, Development and Exchange Intern, Mobility International USA (MIUSA)
Uzbekistan, located north of Iran, east of the Caspian Sea and south of Russia, has a rich history and is home to some of the most ancient cities in the world. Founded in 1000 B.C., Samarkand and Bukhara later became prominent centers of commerce when the Silk Road joined China to the west. Under Mongol rule Samarkand became an ancient center of art and science. Arab, Turkic and Mongolian influences flavor the culture, language and food. Due to Arab influences the Islamic faith remains prominent today. Uzbekistan declared its independence from the Soviet Union in 1991.
Personal experience in the region
As a former Peace Corps volunteer who lived and worked in a small rural village in the neighboring republic of Kyrgyzstan, I gained the perspective of as life as it is lived at its most basic level for citizens of the "global south." This experience was made all the more real by the monthly stipend which was roughly equivalent to the salary of the average Kyrgyz citizen. This unique position allowed me certain insights into the changing social and political climate.
Snapshot of contemporary situation
As do many of the other Former Soviet Republics, Uzbekistan struggles with the transition from a Soviet-style socialist economic system to a western-style capitalist free market economy. High rates of inflation, alcoholism, and poverty, in addition to ethnic conflict and a fledgling democracy have dramatically reduced the quality of life for the average citizen. Confronted with dramatic change over such a short period of time the population reacts in a number of ways. Many seem to feel helpless, vulnerable and long for the security of the "cradle to grave" support the Soviet system provided. Others believe that if they feel passionately about an issue and work towards change that someday conditions will improve. When young, non-disabled, well-educated populations find daily existence a struggle, it is easy to see how less-privileged groups such as elderly people, children and young people who have been orphaned, and disabled people are marginalized due to a lack of resources, skills and opportunities often available to other members of society. Women are now faced with a return to a religious belief system that encourages them to stay at home and limits opportunities for education and employment. Women with disabilities in particular face discrimination on two levels, first as women and second as people with disabilities. International development efforts in Uzbekistan focus on fostering economic growth, promoting civil society and democracy or providing relief and medical support. These programs typically target people with disabilities for only rehabilitation and medical aid, denying their needs for developing other skills and sustaining themselves economically. Amazingly enough, despite these adverse conditions, there is a thriving population of creative, optimistic women who have taken matters into their own hands.
Mobility International USA (MIUSA) is a US-based national non-profit organization whose mission it is to empower people with disabilities around the world through international exchange, technical assistance and training. As a program intern, I was given the opportunity to join forces with these women. Over the course of the past five months, MIUSA worked in partnership with over 40 women with disabilities from Uzbekistan to prioritize issues, develop skills to enhance leadership capacity, and form sustainable networks between women with disabilities and local and international NGOs working throughout the country. The program, funded by the Bureau of Educational and Cultural Affairs of the United States Department of State, consisted of two components: Building Leadership/Building Partnership, a three-day conference held in Tashkent, Uzbekistan and the Loud, Proud & Passionate!sm International Leadership Exchange for Women with Disabilities from Uzbekistan held afterwards in Eugene, Oregon.
Building Leadership/Building Partnership
Building Leadership/Building Partnership, which took place in January 2001, was the first national conference for women with disabilities in Uzbekistan. The four-member team from MIUSA worked in partnership with KRIDI, the Tashkent Club for Rehabilitation and Integration for Children with Disabilities to organize and facilitate the conference. MIUSA consultants, Ellen Rubin, who is blind and a specialist in issues concerning women and girls with disabilities, and Jenny Kern, a lawyer who uses a wheelchair and has expertise in legislation affecting people with disabilities; acted as the main facilitators for the conference activities. Forty-five women with disabilities (plus assistants and interpreters) attended the three-day conference. Participants came from Tashkent, Samarkand, Kokand, Navoi and some of the more remote rural areas of the country. The conference was conducted in English, Russian, Uzbek and Russian sign language.
First opportunity to find commonality of experience
The disability movement in Uzbekistan tends to be fragmented - separate associations and unions exist for people with different classifications of disability. This conference was the first opportunity for women with differing disabilities to join together, discuss their common issues and use their collective experience and creative capacity to develop solutions. Many of the women were at first suspicious of the idea that working together across disability lines was a good idea. One delegate who was deaf asked through her sign interpreter how she as a deaf woman could communicate with someone who is blind. Ellen laughed and asked the question, "Are we not communicating?" Ellen's query was translated into Russian and then into Russian sign language. The young woman smiled broadly as she understood that the barriers were much smaller than she had thought. The conference was truly a unique opportunity to bridge communication gaps and start people thinking about the value and strength inherent in working together.
The first and second days of the conference were spent examining what had already been accomplished in the disability movement in Uzbekistan, prioritizing issues and developing strategies and action plans. It was inspiring to hear the women's individual as well as collective accomplishments. Because there has not been a newsletter or other vehicle through which the women can share their accomplishments with their sisters in the movement, for many this was an unprecedented moment of realization that they are not working in isolation. Each of the women represents a strand of a national movement throughout Uzbekistan. They realized that networking with each other would be crucial to the continued growth and effectiveness of their movement.
Conference participants identified education, health care, legal and legislative issues, economics and employment, technology and accessibility as the top issues facing women with disabilities in Uzbekistan. At the end of the conference, the women wrote a joint resolution addressed to the president of Uzbekistan synthesizing strategies and concerns identified during the first two days of the conference. The resolution called upon the president and parliament to work in cooperation with women with disabilities to address issues of concern. The following points were included:
As of this writing the president has not yet responded to the resolution. However, the very act of working together to create the document and present it to the president was a milestone for this new informal coalition of disabled women.
People with disabilities should have increased control over the implementation of all laws and regulations related to the social welfare of people and women with disabilities.
A law should be passed guaranteeing the rights of children with disabilities to be fully integrated into mainstream education and other services for children.
The infrastructure in cities and settlements should be modified to meet world standards of accessibility.
Pensions and state benefits for people with disabilities need to be raised to a subsistence level.
A state sub-committee of women with disabilities should be formed in the Oli Majlis (parliament) of the Republic of Uzbekistan.
On the third and final day of the conference, 20 local NGOs and US-based international development agency representatives joined the women for the purpose of establishing partnerships with women with disabilities. Soros Fund, Winrock International and Counterpart Consortium were among the international aid agencies in attendance. Elnora Muradova, a representative from the US embassy described funding opportunities through United States Information Service (USIS) grants. Elected representatives from among the participants formed a panel to discuss the five priority issues identified during the first two days of the conference. Their pride and passion was evident in the tone of their voices as they presented their case to possible allies and asked them "How can we work together towards common goals?" and "How do your programs include women with disabilities?" To close the morning session the women read the joint resolution to the assembled NGO representatives.
During the afternoon session, the women and the NGO representatives worked together to identify strategies addressing some of the issues facing women with disabilities. Some of the suggested strategies included: conducting seminars, promoting legal literacy, working with lawyers on formulating appropriate legislation, conducting social research, holding a citizen's forum on legal problems and finding ways to work with government officials on all levels.
Loud, Proud & Passionate International Leadership Exchange for Women with Disabilities from Uzbekistan
The second part of the leadership program involved an 18-day training that took place in Eugene, Oregon in May 2001. The 15 exchange participants were selected from the 45 women with disabilities who took part in the Tashkent conference. The cross-disability group included women who are deaf and hearing impaired, women with visual impairments, and women with mobility impairments resulting from polio, rheumatoid arthritis, cerebral palsy and congenital conditions. The women ranged in age from 19-53, spoke several languages and represented Uzbekistan's diverse population, including Russian, Uzbek and other ethnic minorities.
Building on Building Leadership/Building Partnership discussions, and evaluations as well as on trainer and partner organization recommendations, MIUSA was able to tailor Loud, Proud & Passionate!sm to meet the specific needs of the selected participants. The specially designed workshops, site visits, panel discussions and interactive sessions served to work toward the following objectives:
Program delegates took part in an intensive program that included:
Build cross-disability coalition
Identify role models and mentors,
Teach basic fundraising skills,
Build project design and development skills,
Increase knowledge of Internet use with a focus on Russian sites,
Further, a consultant from Disability Rights Education and Defense Fund (DREDF) facilitated an evening session on legal issues affecting women with disabilities. The women also took part in a workshop on project development and funding conducted by the Global Fund for Women's regional representative for Uzbekistan.
Site visits to local schools and universities, independent living centers, the state capitol and vocational rehabilitation offices.
Team building activities such as river rafting and a ropes challenge course.
Interactive sessions on women's health, domestic violence, legal issues, conflict resolution, utilization of the media and adapted sports.
There were several moments that captured the excitement and sense of pride and confidence expressed by the delegates. As a tool to build teamwork and cohesiveness among delegates, the ropes challenge course is a standard feature in most MUSA programs. One of the challenge course activities is called "the Angel" and in it one woman is secured in a harness and pulled up 30 or so feet into the air by her teammates. People on the ground control the angel's flight by maneuvering three ropes that pull her in different directions. The angel's job is to direct the women holding the ropes so that she might fly within reach of several buckets filled with candy strung high in the trees. To see the women working together, following the instructions of the angel, giving her advice, laughing together as the angel dips and sways above their heads, occasionally magnanimously dropping candy to those laboring below, fills one with a sense of assurance. These are women who are listening to one another; already working together to achieve common goals. One woman who uses crutches found she couldn't grasp the rope and pull without dropping her crutches. Her rope team made the decision to pull the ropes while sitting on the ground so that she might participate equally. The disability movement in Uzbekistan is indeed a force to be reckoned with!
Delegates were required to use public transport to travel to workshops and sessions each day in order to foster a sense of independence. Because the Uzbek public transportation is inaccessible to most people with mobility impairments, many of the delegates had no experience the system. Initially, one of the younger delegates was afraid to ride the bus on her own and asked her homestay mother to drive her in the mornings. After much discussion she agreed to make a trial run on the bus accompanied by a MIUSA staff person. The following day she made the trip by herself. She found the bus stop nearest her house, identified the correct bus, strapped herself in and made her way to the session. All morning long she wore a smile of pride and couldn't stop saying "wait until I tell my mother!"
Another success story involves the mayor of Eugene, Jim Torrey. Mayor Torrey honored the delegation with a brief visit to formally welcome them to Eugene. He entrusted the women with letters he had written to the mayors of the cities where the women lived. In the letters Mayor Torrey invited his Uzbek counterparts to visit Eugene to see the architectural modifications and discuss legislation that had been passed to make the city and the city's services accessible to all inhabitants. Several days after the delegation had returned to Uzbekistan, the delegates from Samarkand paid a visit to their mayor to present the letter and discuss issues of concern with him. They suggested that a law be put into place requiring every structure built from this point forward be accessible. He asked them to write a proposal and promised to bring it up in the next legislative assembly.
An important intercultural aspect of MIUSA's programs includes placing delegates with local families in the community for the duration of the program. Delegates formed strong bonds with their families and parted with tears and promises to keep in touch. The experience is as much a learning opportunity for the delegates as it is for the families. Despite language barriers, American families broadened their knowledge of a little known part of the world and delegates were able to experience American culture first hand.
One of the highlights of an evening celebration was a dance performance by Lena Samsonova, a deaf delegate, who followed the rhythm of the music through the sign interpreter's gestures. The evening was a unique opportunity for the women to thank their host families, share Uzbek and Russian culture with the Eugene community and break down preconceived notions surrounding people with disabilities.
Action plans developed
The training concluded with an exercise in developing action plans. The delegates determined what they would like to accomplish three months, six months and a year from now. Plans ranged from improving accessibility at government offices, medical facilities and schools to establishing Internet Cafes that would function as a business and a place where disabled women could learn computer and Internet skills. Several of the women spoke of procuring funds to strengthen or create disability organizations. Others wrote of their plans to develop media campaigns promoting respectful, rights-based attitudes and public policies toward people with disabilities. Still others will focus their energies on economic development for women with disabilities through training in micro-enterprise. Finally, all of the women will continue to strengthen their networks with each other through newsletters and collaboration on projects.
Impact in Uzbekistan?
What does this all mean for the future of the disability movement in Uzbekistan? What did the women take back with them? Some of the major outcomes of the program included: a sense of solidarity and commonality across disability; mentoring relationships and lasting friendships; a network tying women working for disabled people's rights stretching from Tashkent to Samarkand to Kokand to Navoi to Oregon; as well as a host of new ideas, materials and information to be adapted, reworked or thrown out according to cultural and environmental factors. Social change is a long and arduous process. Women in Uzbekistan face unique obstacles as a result of cultural, religious and political conditions prevalent today. Hopefully, the training provided them with particular skills, ideas and know-how that will allow them to confront these challenges and institute positive change for women with disabilities.
How has this experience impacted me? One of the particularly alarming realizations was that not once in my years as a Peace Corps Volunteer, or as a graduate school student was I confronted with the issue of disability. None of my fellow volunteers had visible disabilities or significant hidden disabilities that I was aware of. I have no recollection of people with disabilities being discussed in terms of target or outreach populations or when addressing diversity in a population in my graduate courses. This internship with MIUSA, which has served as a practicum for my Master's degree, has given me a unique perspective in the field of international development. I leave this practicum wondering why disability issues weren't part of my curriculum? Why wasn't I exposed to this issue earlier? Is it only through personal experiences like this practicum that people are exposed to and gain a better understanding of the importance of including people with disabilities as target populations, field officers, program staff, and members of the board? How are practitioners in the international development field prepared to address this issue? What sort of exposure to disability does the average person entering the development field have? When people with disabilities are not included in all levels of development organizations, the development community is neglecting a rich source of talented, creative people with expertise and valuable insight into issues affecting their particular minority group. In my next position in the international development field will there be people with disabilities working in the field offices? Will there be targeted outreach programs for people with disabilities as there is for other minority groups?
My work with MIUSA and the relationships I formed with exchange delegates and MIUSA staff has given me a new lens through which to examine the field of development. This "disability" lens will forever affect the way I see the world.
MIUSA manages the National Clearinghouse on Disability and Exchange (NCDE), a project sponsored by the Bureau of Educational and Cultural Affairs of the United States Department of State.
Visit MIUSA's comprehensive website at www.miusa.org to obtain additional information on NCDE, search for exchange programs and disability organizations worldwide, fill in an online request for information, learn about financial aid resources and upcoming NCDE sponsored opportunities, and order MIUSA publications.
Contact MIUSA/NCDE at PO Box 10767, Eugene, OR 97440, (541) 343-1284 (tel/TTY), (541) 343-6812 (fax) or email@example.com.