{"id":49774,"date":"2026-10-02T13:14:20","date_gmt":"2026-10-02T11:14:20","guid":{"rendered":"https:\/\/novastan.org\/en\/?p=49774"},"modified":"2026-10-02T13:14:24","modified_gmt":"2026-10-02T11:14:24","slug":"disability-rights-central-asia-janina-arsenjeva","status":"publish","type":"post","link":"https:\/\/novastan.org\/en\/society\/disability-rights-central-asia-janina-arsenjeva\/","title":{"rendered":"Janina Arsenjeva: \u201cFinding a problem doesn\u2019t mean reform has failed\u201d"},"content":{"rendered":"\n
\n\t
\n\t\t
\n\t\t\t

\n\t\t\t\t\t\t\t\tSupport Novastan, the European Central Asia magazine \n\t\t\t<\/h2>\n\t\t\t\tBy supporting Novastan, you are supporting the only English, French and German-language media specialising in Central Asia. We’re independent and we need your help to stay that way! \n\t\t\t\t\t\t<\/div>\n\t\t
\n\t\t\t
\n\t\t\t\t\t\t\t\t\t\t\tSupport Novastan<\/a>\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n\n\n

<\/p>\n\n\n\n

Disability-rights expert Janina Arsenjeva discusses how activism is changing across Central Asia, why progress cannot be measured by legislation alone, and what governments, international organisations and the EU still get wrong about inclusion.<\/em><\/p>\n\n\n\n

<\/p>\n\n\n\n

Disability rights have gained greater prominence across Central Asia over the past fifteen years. Governments have adopted new legislation and policies, disability-rights organisations have become more visible, and the UN Convention on the Rights of Persons with Disabilities (CRPD) has provided activists with a common framework for pushing for change. Yet progress across the region remains highly uneven – and laws on paper do not necessarily translate into greater autonomy, accessibility or inclusion in everyday life.<\/p>\n\n\n\n

For Janina Arsenjeva, who has worked with disability-rights actors across all five Central Asian countries for many years, some of the most significant changes are taking place beyond legislation. A new generation of activists increasingly approaches disability as a question of equality and rights rather than charity, while grassroots organisations led by persons with disabilities themselves are becoming more diverse and assertive. At the same time, people with intellectual and psychosocial disabilities, those living in rural areas and other groups remain particularly underrepresented.<\/p>\n\n\n\n

In an interview with Novastan English Editor-in-Chief Mathieu Lemoine, Arsenjeva discusses why there is no single Central Asian trajectory on disability rights, what meaningful participation should look like, and why international organisations need to rethink the way they work with local disability organisations. She also examines how the European Union can prevent its growing investments in Central Asia from creating new barriers, and argues that greater visibility of problems should not necessarily be interpreted as evidence of failure. Sometimes, she says, it can be the first sign that genuine reform has begun.<\/p>\n\n\n\n

<\/p>\n\n\n\n

Novastan: You have worked with disability-rights actors across all five Central Asian countries over many years. Looking back, what has genuinely changed?<\/strong><\/p>\n\n\n\n

Janina Arsenjeva: One of the biggest changes for me is the disability movement itself. There are more grassroots organisations genuinely led by persons with disabilities, including younger people and women. There are also more organisations representing groups that previously had very little voice. And I see a new generation of activists who really understand disability as an issue of equality and rights, rather than charity or \u201ccuring\u201d people. They may not always know or use the international human-rights vocabulary, but the values are there. That feels very different from fifteen years ago.<\/p>\n\n\n\n

<\/p>\n\n\n\n

Where is the biggest gap today between what exists on paper and what a person with a disability actually experiences in everyday life? What tells you that reform is working?<\/h3>\n\n\n\n

<\/p>\n\n\n\n

I don’t think legislation is the alpha and omega of reform. You can do a lot even with imperfect laws. You can change attitudes, challenge prejudice and make persons with disabilities more visible in public life. Interestingly, one sign of progress is when we start hearing more about problems. It may look as if things are getting worse, but often it simply means somebody has finally started monitoring and talking openly about what is happening. Ultimately, though, the test is very practical. Can someone leave their home? Get support in education or employment? Find the services they need in their community? Uzbekistan, for example, has spent the last few years developing its social workforce and community-based support. That may be less glamorous than passing a big new law, but this is where reform starts changing people’s lives.<\/p>\n\n\n\n

Read more on Novastan<\/strong>: When reform reaches everyday life: Lessons from Uzbekistan and Mongolia<\/a><\/p>\n\n\n\n

<\/p>\n\n\n\n

How misleading is it to talk about Central Asia as though the five countries were moving along the same trajectory?<\/h3>\n\n\n\n

<\/p>\n\n\n\n

Very misleading. These are five different countries, with different politics, priorities, capacities and disability movements. Kyrgyzstan, for example, has done interesting practical work on accessibility, accessible communication and culture, and disability-inclusive emergency preparedness. In Kazakhstan, activists have done excellent work using the courts to restore the legal capacity of persons with disabilities, and there is also a growing social entrepreneurship movement. Organisations of women with disabilities are particularly strong in Kazakhstan, Kyrgyzstan and Tajikistan. And Tajikistan has only just ratified the CRPD. So yes, there is a shared history and there are common challenges. But there is definitely no single Central Asian trajectory.<\/p>\n\n\n\n

<\/p>\n\n\n\n

How can we tell whether participation of persons with disabilities has actually been meaningful rather than symbolic?<\/h3>\n\n\n\n

<\/p>\n\n\n\n

By now, simply saying \u201cwe consulted persons with disabilities\u201d isn’t enough. The first question is: who did you consult? One established organisation cannot represent everybody. You need women, younger people and people with different disabilities around the table. And organisations need to be strong and independent enough to say things the government may not want to hear. Their expertise also has value, and we should stop expecting them to provide it for free. The process matters too. Was it accessible? Did people get enough information and enough time? And was this a one-off meeting, or is there a real mechanism for participation? I do see progress. Activists in several countries tell me that government doors are more open than they used to be, and governments increasingly understand that they actually need persons with disabilities if they want reforms to work.<\/p>\n\n\n\n

<\/p>\n\n\n\n

How much has the shift from a medicalised understanding of disability towards a rights-based model actually happened?<\/h3>\n\n\n\n

<\/p>\n\n\n\n

It is uneven, but I think the shift is real. Uzbekistan is an interesting example. The creation of the National Agency for Social Protection has helped move the discussion away from a very paternalistic and medicalised approach and towards support, inclusion and living in the community. I also see the change among activists themselves. More and more people are talking about equality, autonomy and rights rather than charity. Of course, there is frustration that change is too slow, and I understand that. These are huge systems and they don’t transform overnight. But the direction matters, and so does continuing to push so that this direction is not lost.<\/p>\n\n\n\n

Read more on Novastan<\/strong>: \u201cDisability is a Mirror for the Development of Societies\u201d \u2013 A Conversation with Dilmurad Yusupov<\/a><\/p>\n\n\n\n

<\/p>\n\n\n\n

What do international organisations still get wrong in promoting disability inclusion in Central Asia?<\/h3>\n\n\n\n

<\/p>\n\n\n\n

The way international funding reaches grassroots organisations! Some of the people who know their communities best would never get through a fifty-page funding application in English with all the technical language and complicated budgets. Yet they may know exactly what women with disabilities in their community need, or what is happening to families in a remote village. They may also understand how to navigate a difficult political environment much better than an outsider does. Of course, public money needs accountability. But surely we can design funding processes that don’t exclude the very people whose expertise we need. I would also like to see much fairer partnerships between big international organisations and local groups, where local organisations are not simply there to implement somebody else’s project.<\/p>\n\n\n\n

<\/p>\n\n\n\n

What would it mean in practical terms to make the EU’s growing investment in Central Asia disability-inclusive from the outset?<\/h3>\n\n\n\n

<\/p>\n\n\n\n

The basic principle is very simple: EU money should not be used to build new barriers. The EU already has rules and standards around accessibility, procurement, human rights and responsible business, although applying them consistently to international cooperation and investment is more complicated. But accessibility has to be considered from the beginning. If you build a railway station, public building or digital platform that people with disabilities cannot use, fixing it afterwards will be much harder and more expensive. You also need monitoring and real consequences when accessibility requirements are ignored. We haven’t solved all of this inside the EU either.<\/p>\n\n\n\n

<\/p>\n\n\n\n

Which people are still least visible in disability policy in Central Asia? Are there issues governments and international organisations remain reluctant to confront?<\/h3>\n\n\n\n

<\/p>\n\n\n\n

People with intellectual and psychosocial disabilities are still particularly invisible, including within the disability movement itself. People living in rural and remote areas are also much less likely to be heard. And then there are issues that are simply much harder to talk about. Disability can look like a relatively easy development issue if we talk about wheelchairs, social benefits or accessibility. But then you get to legal capacity, political rights, abuse and torture in institutions, or punitive psychiatry. Those are much more difficult conversations. Local activists should guide how these issues are raised, but we also shouldn’t expect them to carry all the risk. Sometimes international organisations can say things that local activists simply cannot safely say themselves. The important thing is to do that with them, not on their behalf or without understanding the consequences.<\/p>\n\n\n\n

<\/p>\n\n\n\n

Is a genuinely regional disability-rights movement emerging in Central Asia?<\/h3>\n\n\n\n

<\/p>\n\n\n\n

Not yet, in my view. Organisations across the region know one another and there are good examples of cooperation, particularly among organisations of women with disabilities in Kazakhstan, Kyrgyzstan and Tajikistan. But I don’t yet see a strong, regular regional movement built around common priorities. Central Asia also falls between different international regions. Sometimes it is grouped with Europe, sometimes with Asia, so disability organisations don’t necessarily have an obvious regional home. I do think a stronger Central Asian network could be very valuable. These countries share borders, experiences and many challenges. But I would want it to be built around where the region wants to go next, rather than simply around the fact that all five countries share a Soviet past.<\/p>\n\n\n\n

<\/p>\n\n\n\n

What makes you optimistic about disability rights in Central Asia today, and what change would you most like to see over the next decade?<\/h3>\n\n\n\n

<\/p>\n\n\n\n

What makes me optimistic is the people. I have just come back from Uzbekistan, where I met activists and persons with disabilities who are building support in their communities and pushing for alternatives to institutions. They are incredibly persistent and creative. Over the next decade, I would really like to see a more diverse disability movement, with much stronger voices from younger people and from groups that are still underrepresented: women and girls, Deaf people, persons with intellectual disabilities and others. I would also like to see better data, stronger monitoring and human-rights institutions that really play their role. And perhaps most importantly, I want us to become much more comfortable talking honestly about what isn’t working. Finding a problem doesn’t mean reform has failed. Sometimes it is the first sign that real reform has begun.<\/p>\n\n\n\n

\u00a0<\/p>\n\n\n\n

By Mathieu Lemoine, Editor-in-Chief for Novastan English.<\/p>\n","protected":false},"excerpt":{"rendered":"

Disability rights are gaining ground across Central Asia, but progress remains uneven. Janina Arsenjeva discusses what is changing, who is still being left behind, and why finding problems can itself be a sign of reform.<\/p>\n","protected":false},"author":358,"featured_media":49796,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[4939,4,3,1,4668,6,5],"tags":[4087,4941,4940,4203],"coauthors":[358],"class_list":["post-49774","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-interview","category-kazakhstan","category-kyrgyzstan","category-non-classe","category-society","category-tajikistan","category-uzbekistan","tag-central-asia","tag-crpd","tag-disability-rights","tag-human-rights"],"acf":[],"_links":{"self":[{"href":"https:\/\/novastan.org\/en\/wp-json\/wp\/v2\/posts\/49774","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/novastan.org\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/novastan.org\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/novastan.org\/en\/wp-json\/wp\/v2\/users\/358"}],"replies":[{"embeddable":true,"href":"https:\/\/novastan.org\/en\/wp-json\/wp\/v2\/comments?post=49774"}],"version-history":[{"count":2,"href":"https:\/\/novastan.org\/en\/wp-json\/wp\/v2\/posts\/49774\/revisions"}],"predecessor-version":[{"id":49776,"href":"https:\/\/novastan.org\/en\/wp-json\/wp\/v2\/posts\/49774\/revisions\/49776"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/novastan.org\/en\/wp-json\/wp\/v2\/media\/49796"}],"wp:attachment":[{"href":"https:\/\/novastan.org\/en\/wp-json\/wp\/v2\/media?parent=49774"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/novastan.org\/en\/wp-json\/wp\/v2\/categories?post=49774"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/novastan.org\/en\/wp-json\/wp\/v2\/tags?post=49774"},{"taxonomy":"author","embeddable":true,"href":"https:\/\/novastan.org\/en\/wp-json\/wp\/v2\/coauthors?post=49774"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}