Janina Arsenjeva - Senior Expert in Disability and Social Inclusion
I originally joined the world of human rights for deeply personal reasons. Growing up in the 1990s and carrying a few intersecting identities myself, I was very aware of how some experiences and communities carried stigma and rejection. That early awareness of how different forms of exclusion intersect continues to shape how I approach disability rights today.
As I started working in Human Rights, one thing became impossible to ignore: disability was still largely absent from the conversation. This was before the Convention on the Rights of Persons with Disabilities, before disability took its rightful place in the international human rights family, and was mostly approached through charity, medicalisation, or uncomfortable silence.
Once I started, I never wanted to do anything else.
Over the years, I have worked across the EU, Eastern Europe, and Central Asia with governments, UN agencies and organisations of persons with disabilities.
Much of my early work, right after the adoption of the Convention in 2006, involved helping institutions understand what they had signed up for and building some of the first inclusion structures and policies.
The Convention introduced ideas that were genuinely revolutionary at the time. I remember the great late Gábor Gombos joking that if a government readily spoke about implementing Convention’s Article 12 on legal capacity, it probably had not understood its complexities at all. Real inclusion comes with growing pains and challenging assumptions about autonomy, participation, and who society is designed for.
Today, nearly twenty years later, a lot has changed. There are laws, campaigns, reporting standards and discussions about measurable outcomes.
But people with disabilities around the world continue to experience exclusion as part of daily life: in education, access to resources, housing, migration, and political participation.Working across very different political and institutional environments has taught me that the core challenges are often remarkably similar, whether in Estonia (where I come from), Belgium (where I live) or Uzbekistan (where I sometimes work). What changes is the scale, the resources available and the context.
The post-Soviet region continues to navigate the long and uneven process of decolonisation. The progress may be patchy, but I would like to give credit to the remarkable resilience and perseverance of the amazing disability activists there.
Much of my work today sits at the intersections of topics, or regions, of systems. Inclusion is not a niche topic: I dream of a time when it's embedded in how all societies function. So I see my role as helping build bridges at these intersections to start conversations that would not naturally start.
I increasingly see my role as helping build bridges between regions, systems and conversations that don’t always naturally connect. In the disability community, governments are our main interlocutors, understandably. We need good policies, funding and oversight. But recently, I have increasingly become interested in the role of the private sector in delivering disability inclusion. Companies shape labour markets, products, services, technology and everyday participation – often more directly and immediately than governments do!
I would love to eventually put myself out of work. But that will only happen when people with disabilities are routinely present in workplaces, boardrooms and public offices, and when their presence no longer surprises anyone. Until then, I’ll keep going.
For more information about the Convention on the Rights of Persons with Disabilities, please refer to the following document:
https://www.ihrec.ie/app/uploads/2022/08/CRPD-Explained-A-Brief-Guide-to-the-CRPD.pdf