Disabled people are left behind in the first-ever census in Uzbekistan - Dilmurad Yusupov
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Disabled people are left behind in the first-ever census in Uzbekistan

Illustration: Eldos Fazylbekov / Gazeta.uz

Last year, in the op-ed for Gazeta.uz “They won’t count us?” (in Russian) I stressed the importance of including disability questions in the first-ever population census in the history of independent Uzbekistan (the last census was conducted in 1989 when I was born). In the article, I pointed out that without an assessment of the socio-economic situation of disabled children and adults, it is impossible to include them in our society.

According to the presidential decree from 5 February 2019 “On the approval of the concept of the population census in 2022 in the Republic of Uzbekistan” reliable statistical information on vulnerable groups of the population, including disabled people, is a necessary basis for the implementation of effective social policy and serves as a basis for conducting scientific research in the field of social protection. Senator Farmon Toshev also suggested to include questions on the needs and problems of disabled people in the census programme. However, in March 2020 the chairperson of the State Committee on Statistics Bakhodir Begalov said that each question to be included in the census requires “certain financial resources”:

“We don’t know how to define a person’s disability. This is determined by [specialists]. In the practice of many states, these [disability] questions are not included in the census questionnaire. We have proposed not to include them yet, and we believe that specialists and special structures should deal with this,” said the head of the State Statistics Committee.

Mr Begalov is wrong! Disability questions are being included in the population censuses and household surveys in many countries including the developing ones. Is not it a shame that the main state statistical agency in the country with the biggest population in Central Asia does not know how to collect and analyse data on disability and refers to some “specialists” and “special structures” to deal with this issue?

In March the Senate Chairperson Tanzila Narbaeva said that it is important to show disabled people in the population structure, and recommended that the State Statistics Committee study the experience of other countries where disability questions were included in the census forms. It remains unclear whether the statistics committee did study other countries’ experience. My personal thought is that the committee is not including the disability questions in the population census on purpose in order to save money on disabled people.

Until now, the main source of disability data has been the administrative dataset of the Medical and Labour Expert Commissions (VTEK) on the number of registered recipients of disability pensions and social benefits. This approach to assessing the disability prevalence in Uzbekistan can be erroneous due to the declarative principle of counting disabled people, bureaucracy and possible corruption in the system, identifying only “worthy” candidates for benefits, the medicalisation of disability, and other factors discussed in detail in my previous article. Have a look at the diagram below.

If we compare Uzbekistan with Kazakhstan, then with a population of almost two times less, the number of registered disabled people in Kazakhstan is about 674.2 thousand people, while in Uzbekistan we have only 650.3 thousand officially registered disabled people. Over the past five years, the number of disabled people in Kazakhstan has increased by 7.5%, while in our country this number is gradually decreasing based on Uzbek official statistics. Is in it strange?! Does this mean that Uzbekistan is doing much better by having less disabled people compared to other post-Soviet states with similar systems of disability assessment?

Including disability questions into censuses and surveys is not rocket science! There is the Washington Group short set of questions on disability which are designed to provide common definitions, concepts, standards and methodologies in the production of statistics about persons with and without impairments. The national survey of 4,000 households “Listening to the Citizens of Uzbekistan” (L2CU) conducted in May-June 2018 with the support of the World Bank and UNICEF in Uzbekistan for the first time in Uzbekistan included a short set of questions on disability developed by the United Nations Washington Group on Disability Statistics.

The results of the L2CU survey showed that about 13.5% of the surveyed population aged 3 and over have “some difficulties” in at least one of the six functional abilities. 3.5% of the respondents answered that they face “many difficulties” in at least one of the six questions. In other words, based on the survey data there are 4.5 million disabled people and 1.15 million people with a severe disability in Uzbekistan.

If we compare with the administrative data of VTEK on the number of citizens who receive disability benefits, only less than 2% of the population officially have a disability status. That is only 670,800 people are registered as disabled, which points to not only a weak system of disability assessment but also significant underreporting of disabled people by the national social protection system. This means that many disabled children and adults are remaining invisible to the system and are left behind without access to support services and social benefits. Such gross underreporting violates the rights of disabled children and adults in Uzbekistan and hinders any state effort to develop a disability-inclusive social protection system aimed at empowering and providing opportunities for their equal social, economic and political participation.

Internationally comparable data on disability are needed to measure and monitor progress towards the UN 2030 Agenda for Sustainable Development. Disability is included in the five Sustainable Development Goals (SDGs): quality education, decent work and economic growth, reducing inequalities, building sustainable cities and human settlements, and partnerships for sustainable development. The last goal 17 obliges the member states to:

“…to increase significantly the availability of high-quality, timely and reliable data disaggregated by income, gender, age, race, ethnicity, migratory status, disability, geographic location and other characteristics relevant in national contexts”.

Equally important, the basis for monitoring and implementing the principles of the UN Convention on the Rights of Persons with Disabilities is the proper collection of disaggregated statistical and research data on disability. Sooner or later Uzbekistan will ratify the CRPD, and we need to think now about creating a full and updated database on disabled people, their degree of functioning and various demographic and socio-economic characteristics.

Such data would also help us (researchers) in carrying out an academic analysis of the accumulated problems in the field of social support for disabled children and adults, as well as assessing the barriers for their full participation in our society. Achievement of all the set goals for integrated accounting and data collection seems to be the most possible in the framework of the upcoming population census, as well as special sample surveys.

The State Statistics Committee of Uzbekistan announced yesterday that the 2022 population census is postponed to 2023 “for the purpose of thorough preparation” and the fact that many countries are now postponing the census due to the COVID-19 pandemic. It is not too late to consider including disability questions in the 2023 census. We must not leave disabled people behind in conducting the population census in Uzbekistan. Everyone should be counted properly!

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