31 Dec Lockdown = Knockdown: Wrapping Up 2020
Photo: Disability rights activists after the roundtable on December 3, 2020, Author: Guljakhon Amanova
“The words ‘lockdown’ and ‘knockdown’ became synonymous and severely hit children with learning disabilities,” said one of the activists for the rights of persons with autism in Uzbekistan Farkhad Artykbaev at the roundtable on 3 December – the International Day of Persons with Disabilities. 2020 was an extraordinary and difficult year for all of us but particularly challenging for disabled children and adults as well as their families. In 2020, together with grassroots activists, we wrote 21 articles in the local and regional media covering pressing issues of disability inclusion and social support during the pandemic, deinstitutionalisation and civil society development in Uzbekistan.
Independent Uzbek civil society: to be or not to be?
I started the year advocating for the development of a genuine civil society in Uzbekistan. Together with Oybek Isakov, we asked why it is so difficult to open an NGO in our country. Unfortunately, many self-initiative grassroots groups are still struggling to register their NGOs like the Youth Volunteer Centre “Oltin Qanot” which already received more than 18 refusals from the Tashkent city Department of Justice. Despite some hope sparked by the registration of the first human rights group in Uzbekistan since 2003 NGO Huquqiy Tayanch led by Azam Farmonov, the third sector regulation is still based on control rather than an equal partnership between the state and civil society organisations. I summed up the challenges that NGOs in Uzbekistan are still facing in ‘Spotlight on Uzbekistan’ a publication by the Foreign Policy Centre.
We were glad to see the Ministry of Justice of Uzbekistan’s reaction to our advocacy efforts to ease the registration and control of independent NGOs (not GONGOs!). However, Uzbek civil society advocates’ strong voices and the alternative Code of NGOs that they developed were left behind. At the same time, the Ministry has not still published the draft NGO Code for public discussion. Instead of using COVID-19 crisis as an opportunity to build the capacity of local NGOs and civil society organisations, the Uzbek government chose the top-down approach through centralisation of aid allocation. Indeed, the survey of 1,100 NGOs conducted by the Development Strategy Centre showed that 72% of NGOs were not involved by the government bodies to solve the problems related to the COVID-19 pandemic.
Why do we need to shut down the orphanages?
Being inspired by the online course “A Short Introduction to Transforming Care” at Lumos, I provided 5 reasons to shut down the orphanages and 5 myths about their necessity in the context of Uzbekistan. Together with Takhir Mirdjaparov, Chairman of the Republican Association of Foster Families of the Chuvash Republic, Director of the Nadezhda Charitable Fund for the Support of Orphans, we also wrote an in-depth analysis of the deinstitutionalisation process in Uzbekistan and provided our recommendations. However, our critical analysis was not welcomed by the local experts, and we were blamed for incompetence in the issue. But we still think that the reform process is stuck! The Ministry of Public Education is not doing enough to effectively transform care without causing damage to children’s development in Uzbekistan.
Inclusive education in law, but still not in practice
We also advocated for the correct definition and implementation of inclusive education in Uzbekistan. I tried to explain the difference between integrated and inclusive education. In a team with experts, parents of children with learning disabilities and disability activists, we made our suggestions on how inclusive the new Law “On Education” should be. For the first time in Uzbekistan’s history, Article 20 on “Inclusive education” was included. Nevertheless, the administrative procedures for organising inclusive education should still be determined by the Cabinet of Ministers of Uzbekistan. I hope parents groups and disability activists will be involved in this process in 2021. You can also watch the webinar on inclusive education and how to combat ableism hosted by the American Councils for International Education in Uzbekistan.
Why Society of the Deaf is led by a hearing person?
Together with the deaf activist and blogger Mamur Akhliddinov we analysed how has the life of deaf people changed since the president’s visit in June 2018. Unfortunately, not many things changed but even deteriorated after the Tashkent city hokimiyat seized the 1,2 hecaters of the territory that belonged to the Cultural Centre for the Deaf. Deaf football champions are struggling to train during winter as the stadium of the Sports Federation of the Deaf is in disrepair. Tashkent city hokimiyat’s press service promised to investigate these issues but no concrete action or explanation has been made so far.
Then we wrote another article at Hook.Report criticising the hearing chairperson of the Central Board of the Society of the Deaf for not protecting the rights and interests of deaf and hard-of-hearing people in Uzbekistan particularly during the COVID-19 pandemic. No feedback followed from the relevant state officials but the hearing chairperson stepped down early November and his position was taken over by the hard-of-hearing ex-director of the Cultural Centre for the Deaf Guzal Shodieva. One successful outcome of our joint advocacy effort was the draft decree of the Cabinet of Ministers on recognition of the legal status of the Uzbek Sign Language (USL). You can read our article “Uzbek Sign Language (USL): to be or not to be?”.
Has ‘disability’ become a human rights issue?
Thanks to the advocacy efforts of the Association of Disabled People of Uzbekistan uniting 28 organisations for/of disabled people throughout Uzbekistan the new Law “On the Rights of Persons with Disabilities” was signed by the President Shavkat Mirziyoyev on October 15, 2020 (comes into force on January 16, 2021). Although the new law seems to be based on a human-rights based approach to disability, me and Oybek aka argued that the legal definition of disability is still largely medical and conflated with a person’s physical condition. Therefore, the new law is still not compatible with the UN Convention’s principles on the Rights of Persons with Disabilities that Uzbekistan signed in 2009 and remains one of the few countries that hasn’t ratified it yet. The biggest question is how disabled people could implement their new rights if they are not really aware of them, and the judicial systems remain inaccessible to them.
Building back batter
From November 3 to December 3 in partnership with the Office of the United Nations High Commissioner for Human Rights, the Regional Office for Central Asia (OHCHR ROCA), the OSCE Project Co-oridnator in Uzbekistan, the NGO “Sharoit+” and the National Media Company UzReport we organized the “Media Marathon for the Protection of the Rights of Persons with Disabilities during the COVID-19 Pandemic and Beyond”. A culmination of the media marathon was the roundtable at Hilton Hotel in Tashkent on December 3, on the theme: “Building Back Better: toward a disability-inclusive, accessible and sustainable post-COVID-19 in Uzbekistan”. We talked about the rights of disabled children, girls and women, the rights to quality education and decent employment during the pandemic and beyond. I also did a presentation on how COVID-19 affected the livelihoods of disabled people in Uzbekistan and wrote an article on inclusive employment dedicated to the IDPD.
What do I expect from 2021?
I hope 2021 will be less disastrous than 2020! I am looking forward to implementing the small project that we started at NGO Sharoit+ to provide decent employment opportunities for disabled people in Tashkent through a specialised and accessible recruiting website. The project is financed by the small grant of the UN joint programme on social protection in Uzbekistan. Importantly, I hope the Convention on the Rights of Persons with Disabilities will be finally ratified by Uzbekistan in 2021 (but I am very pessimistic on this!). Unfortunately, my petition to the MeningFikrim.uz portal was denied because it turned out that issues concerning participation of my country in the international treaties are not considered. Anyway, we will continue our advocacy efforts to build a disability-inclusive, vibrant and open society in Uzbekistan!
Happy New Year!