While the COVID-19 pandemic and the measures to contain it created difficulties for everyone in Uzbekistan, these hit particularly hard on the most vulnerable and marginalized people in society. Those with the means to do so could still live relatively normal lives in lockdown conditions, but people with disabilities faced severe challenges.
Even before the pandemic began, the Government of Uzbekistan had declared that the inability of disabled persons to lead normal lives was unacceptable. In his address to the Oliy Majlis on 29 December 2020, President Shavkat Mirziyoyev said that ensuring people with disabilities have the same rights as other citizens is one of the biggest challenges faced by modern society.
The United Nations Development Programme is used to taking up difficult challenges and working collaboratively to overcome them. It has stepped up to help the government tackle this one, creating and launching a new programme with sister agencies UNICEF and the International Labour Organization. The UN Joint Programme on Social Protection began operations immediately before the pandemic, with the goal of assisting low-income families, unemployed young people, and people living with disabilities.
Matilda Dimovska, UNDP Resident Representative in Uzbekistan, said this combined effort has brought together national and international experts, government partners, and activists in the community of people living with disabilities. “We are proud to be working with so many brilliant minds in support of this very important government priority,” she said. “We won’t stop until our work is done.”
The programme has two primary paradigmatic pillars, each of which are reflected in Uzbekistan’s Development Strategy for 2017-2021. These include the conceptual frameworks of the social model of disability, and the International Classification of Functioning, Disability and Health (ICF) as first introduced by the World Health Organization in 2001.
The social model of disability
Mirjahon Turdiev, research assistant at Syracuse University of the US in the field of social justice and inclusion, explains that the social model of disability suggests it is society which must meet the needs of people with disabilities. This contrasts with the medical model, which concludes that a person with a disability is flawed and must improve themselves accordingly. The social model proposes that people are disabled “not because of how their bodies look or because of their appearance, but because of the way society treats them.”
As Mr Turdiev describes it, the social model is easier to explain than to put into practice, because it requires changing how people think and this means altering their language. The concept of how our language influences and shapes our cultural reality, by structuring our thought processes, is commonly called linguistic relativity.
The structure of a language affects its speakers' world view or cognition, and thus people's perceptions are rooted in their spoken language. As the words currently used to describe disability in Uzbekistan are rather disempowering, one direction of the Joint Programme on Social Protection focuses on changing how this issue is spoken and written about. Part of this work has been developing the ‘One of Us’ series of programmes, currently broadcast on Uzbekistan’s Radio Maxima, and archived on the radio station’s website.
The International Classification of Functioning, Disability and Health
Closely related to the social model of disability, the ICF framework describes and organizes information on functioning and disability, while recognizing the influence of a person’s environment and standard of health. It offers a scientific basis for understanding disability, and a common language to be used by healthcare workers, researchers, policy-makers and the public (including people living with disabilities and the media). It seeks to counter the false dichotomy between ‘disabled’ and ‘able-bodied’ persons, as a way to fight stigma.
Disabled persons’ organizations or DPOs are representative bodies or groups of persons with disabilities, who constitute most of their staff, board members and volunteers at all levels. Last year, in 2020, the UN Joint Programme introduced the ICF framework and the norms of the UN Convention on the Rights of Persons with Disabilities in Uzbekistan, and began training representatives from select DPOs and Medical and Labour Expert Commissions in its principles.
Muhabbat Rakhimova is the director and founder of ‘Sharoit Plus’, one of eleven DPOs that the Joint Programme assists and provides training to. She founded Sharoit Plus in part to pay forward benefits she herself had gained from training and support programmes. “Before I would not go out into public and mostly stayed at home, until I was invited to a training on independent life skills, and after then I started to look at myself differently. That was a turning point in my life,” she said.
“I remember thinking that there must be more people like me,” she added. “I wondered what I could do to bring them out, empower them and make them more confident.”
At the centre of Sharoit Plus’s multifaceted approach is an effort to counter the common ‘charity model of disability’. As Rakhimova describes it, people with disabilities in Uzbekistan are not taught to be confident members of society who can handle tasks and challenges themselves, and so they will seek to be dependent on others. “This strengthens the harmful idea that people with disabilities can only be cared for and are unable to participate fully in society,” she said.
Before the pandemic forced all people indoors, Sharoit Plus worked to bring those with disabilities into public spaces, using public transport and facilities, while encouraging them to be both active and visible. The 2020 quarantine measures naturally limited these efforts, but alternative digital approaches were found.
Rakhimova’s DPO offers training in life and work skills, and has launched an online employment portal with the Joint Programme’s assistance, but it also seeks to give disabled persons greater public voice. “One key part of our work has been to help people with disabilities produce public media materials, including talks on camera which will draw attention to concerns like the inaccessibility of public places, helping them be advocates and empowered stakeholders in the public domain,” Rakhimova said.
Another one of Rakhimova’s initiatives is called ‘My Strong Mother’ – videos of mothers of persons with disabilities, talking about the challenges they go through, and obstacles overcome. “We hope these projects will change how people see families with disabled people, and create the greater public insight needed to advance the social model of disability.”
A collaboration to shift perceptions
Mirfozil Khasanov, UNDP Task Manager on Social Protection and Disability Issues, says the way disability is generally perceived in Uzbekistan has been established over time, and so introducing ICF and the social model of disability will be a gradual process, involving many stakeholders. “We need to change how people in all spheres of life think and talk about disability, while helping those with disabilities to advocate for their rights,” he said. “We also need to ensure that those who can influence the public and private sectors, help to make them more inclusive. We understand that achieving these outcomes, and sustaining them, is not something that can be done overnight.”
Khasanov said everyone can help introduce the social model of disability in Uzbekistan. For example, journalists can share new ideas, using new words. “Schools and universities, and employers, can include people with disabilities,” he added, “not just to fill quotas, but because they have essential talents and abilities. People with disabilities must be able to see their own worth, through the genuine support of families, educators and the public.”
On 29 May 2021 the Senate of Uzbekistan approved a law ratifying the UN Convention on the Rights of Persons with Disabilities (CRPD). Through this action Uzbekistan has taken on commitments to better ensure the rights of persons with disabilities, including making public infrastructure and information more accessible.
The UN Joint Programme will continue supporting Uzbekistan’s process of integrating CRPD principles into social system reforms.
The road to equity is long, but it is one worth travelling.
Please visit the programme’s webpage for more information on its efforts and objectives.