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FRIDAY FILE: An activist for rights for women with disabilities in Uzbekistan explains, “we can build ramps and elevators, which are needed, and write 33 laws, but changing mindsets is much more difficult.”
By Lejla Medanhodzic with Masum Momaya
Landlocked in Central Asia, Uzbekistan, a republic of 27 million people, has been ruled by one man since its independence from the Soviet Union in 1991 – Islam Karimov. Under Karimov’s authoritarian regime, repression, torture and arbitrary detention are commonplace, and campaigns for rights are squashed. In 2005, protestors in the southern part of the country were massacred, and the government cracked down on NGOs. By the end of the year, only 300 of Uzbekistan’s 3000 NGOs were allowed to retain their registrations. Today, most that remain operating are involved in providing social services and do not do or have difficulty doing openly political or rights work.
Under communism, most people with disabilities had benefits and pensions. In accordance with having as many people contribute to the economy as possible, people with disabilities were employed in specifically designed working environments, such as factories, and had state-provided transportation to their jobs. But even then – and still today - buildings and public spaces are not constructed for those with mobility challenges and are thus virtually impossible to access.
AWID spoke with a longtime activist for women’s rights and the rights of women with disabilities in Uzbekistan to learn more. Given the context of persecution, she asked to remain anonymous for security reasons.
AWID: Legally, what are the provisions for people with disabilities in Uzbekistan? And how does this translate in reality?
Activist from Uzbekistan: Paradoxically, we have quite advanced laws for people with disabilities. Currently, laws addressing the needs of disabled people in education and employment are being considered. But these are declaratory laws; there are no ordinances to implement or fulfill the laws. Still, the government does take some measures and gives some funds to social organizations helping people with disabilities.
In 2004 and 2005, an organization I work with did a lot of public education about legislative changes for people with disabilities, but we ran into an obstacle. In order not to merely inform people about legislation but equip them to change it, we started talking about leadership. The government did not like this, and people generally found it incomprehensible that women with disabilities are capable of leadership.
AWID: Are the laws and programs for people with disabilities gender-sensitive?
Activist from Uzbekistan: No. And traditions and attitudes get in the way. For example, in the last five years in Uzbekistan, there has been an initiative towards inclusive education. Pilot schools and preschools are opening up but many more boys with disabilities attend those schools than girls with disabilities.
Why are parents of boys with disabilities more willing to put them in school than the parents of girls with disabilities? It is not profitable to invest in girls. The families do not put up money for girls for textbooks, school clothes, transport and breakfast because it is assumed that there will be no return on investment. The stereotypes in society say that a girl has no need for an education. Instead, she could be providing unpaid labor in the home cooking, sewing and looking after other children.
Also, no consideration is given to the fact that if a girl just sits at home and does chores that she is isolated. Only if parents are especially progressive do they put their girls with disabilities in school. Education enables socialization and leads to the opportunity to find employment and as a result, girls become economically independent; most girls with disabilities are denied this.
AWID: How are women with disabilities viewed and treated?
Activist from Uzbekistan: Women with disabilities face multiple forms of discrimination. People have strong stereotypes about them, namely that they are an economic burden and do not have their own dreams and desires, including sexual desires.
For example, there is no future imagined for each of those girls with disabilities who are kept from going to school. No one considers that a girl with disability is a person with friends, who loves and is loved and is growing into a woman, with her own personal life and career goals. A girl with disability is considered to be sexless. We are trying to deal with this right now. It is taboo in Uzbekistan.
Over the last ten years, we have worked with groups of women and been able to talk about reproductive health, contraception and STD and HIV/AIDS prevention but we have not yet been able to talk about the subject of sexual intimacy. As a result, so many women reject their bodies and reject their desires.
In Uzbekistan, the family is the primary place where many people can raise questions, and since sexuality and sexual intimacy are taboo topics, they do not get discussed anywhere.
AWID: Can you say more about reproductive and sexual rights for women with disabilities?
Activist from Uzbekistan: First, there is a stereotype that women with disabilities cannot have children or that they should not have children because they will not be good mothers and/or their children will automatically also be disabled. More often than not, a woman with disabilities is able to give birth to healthy children and is able to care for them. And it should be her right to choose.
Second, sexual rights are tied into the issue of marriage, which is influenced by the expenses associated with wedding rituals. Any wedding ritual begins with the birth of the girl. The girl is born and the mother begins a chest where she puts fabric, money and decorations for her dowry. Getting a girl married is very expensive. So, it is an additional financial burden placed on the family of a girl with disability. It is simpler not to marry her off. It's easier to let her sit at home. More importantly, the assumption is that she has absolutely no chance or opportunity that she will get married because she is disabled.
For a girl with a disability, after she has been diagnosed, the doctors confirm that she will never be “normal.” She's not going to move the same way, think the same way, and talk like other people. And if she has some kind if internal illness, this subject is not even brought up in her life. She is raised not to get married, like a sexless entity that is always going to be with her relatives and be dependent on them. So, she is going to be a sort of beggar, the very lowest social level.
AWID: Are women with disabilities embraced as part of the larger women’s movement in Uzbekistan?
Activist from Uzbekistan: We are working on this. In fact, to view the disabled women’s movement separately from the women’s movement is not right because we are all women and we have a lot in common, and we need to push forward for all of our issues together.
By separating, we are weakening each other. Recently, there was one poignant example of this. The women’s movement has been working to raise awareness about HIV/AIDS transmission and prevention, but the information was not accessible to women who cannot hear and speak. We had one woman who does not hear or speak who came to our meetings. Sometimes we had a translator for her. But one day she stopped coming. We found out later that she had had unprotected sex and contracted HIV/AIDS. People living with HIV/AIDS face great stigma in Uzbekistan. When her neighbors found out that she was HIV positive, they got her evicted, and we never saw her again.
At the end of the day, all women are subject to abuse, violence and repression.
AWID: Has the organization you work with directly experienced repression from the Uzbek government?
Activist from Uzbekistan: We were initially registered in 1999, but in 2005, when the government was thoroughly inspecting all NGOs, it tried to shut us down three times. Our documents were given to the Prosecutor General’s Office for investigation, and it ran all kinds of different audits on us. We were very nervous. But we survived, not just because we did good work, but also because influential people stood up for us.
AWID: What kinds of strategies are important to advance the rights of women with disabilities?
Activist from Uzbekistan: We use a number of strategies, including lobbying for further, gender-sensitive legal reform and government implementation of the laws. Recently, we have not done as much speaking on television and radio because we do not want to attract the attention of certain officials.
More covertly, we conduct discussion groups with women that focus on personal and practical topics. The approach we take is that although we can say to women and girls, “you need to study, you need to work hard, you need to become economically independent,” they will not be able to move forward in their lives until they believe in themselves, until they trust in the people around them, until they learn to express and talk about their daily problems and until there are shifts in social attitudes. Ultimately, we can build ramps and elevators, which are needed, and write 33 laws but changing mindsets is much more difficult.