Hopeful Because She Is Curious 

Over the course of her career, Janina Arsenjeva has worked with governments, international organizations, civil society actors, and disability rights movements across Europe and Central Asia. Her work has taken her to all five Central Asian republics, where she has supported efforts to advance inclusion, equality, and disability rights in contexts shaped by complex histories, rapid transitions, and diverse social realities.

In this conversation with ADC, Janina reflects on what meaningful inclusion looks like in practice, why collaboration matters, how leadership can accelerate change, and what businesses can learn from the inclusion journey. 

Throughout the discussion, one message emerged again and again: inclusion is not a destination. It is a continuous process that requires commitment, humility, and a willingness to learn.

What has your journey across Central Asia and Europe taught you?

I began by asking Janina what her work had taught her about meaningful inclusion and whether she had encountered examples of institutions that had genuinely succeeded in creating inclusion that works.

Janina began by reflecting on her connection to Central Asia and the lessons the region has taught her over the years.

"Central Asia has been my big love and passion for a long time. I have found this niche because of certain skills and experiences that could be transferable to the region. What I do is not at all unique, but I have been able to apply universal knowledge on inclusion, disability and non-discrimination to the context of former Soviet countries that are still going through a process of decolonization.

There are language barriers, cultural differences, and different historical realities. We know fairly little about Central Asia. It often falls between spheres of influence. If you look at international classifications, Central Asia belongs to the broader Europe region, but if you look at it from Europe, it can feel like a completely different universe."

Janine continued to explain that inclusion is not a finite process. It doesn't have a beginning and an end. Even countries that are often given as "examples of inclusion" still have people who are unhappy with the state of equality in their country. There will be people taking their governments to court. There will be people complaining. 

She added, "I actually find that to be a very good sign because it means there is awareness. People start recognizing that something is not okay, that there are certain practices that should not be happening. Twenty or thirty years ago they might not even have recognized them as a problem. We watch movies from the 1950s and 1960s where a woman's place is in the home and that was simply accepted. Today we see things differently. Inclusion works in a similar way. We begin by recognizing things that previously went unquestioned."

One of the strongest themes throughout our conversation was Janina's belief that inclusion cannot be achieved by governments, organizations, or experts working in isolation. Meaningful progress happens when the people most affected by decisions are involved in shaping them.

"Whenever I have seen good practices of disability inclusion, they have only happened when people worked together. You cannot really achieve disability inclusion just because a government sits down and decides to write good policies. If it doesn't include people, it will inevitably miss out on what people want, how people see inclusion, and how different people experience equality.

You need to include people with disabilities not only as beneficiaries or as people who check whether policies are implemented correctly, but also as implementers of those policies. That is really the only way you can achieve meaningful inclusion.

Increasingly, I see that the problems are often the same everywhere. The magnitude can be different. The context can be different. But there isn't a country in the world that has successfully eliminated inequality. That's why there is value in humility. There isn't somebody who has got it completely right and somebody else who has got it completely wrong. I've seen a lot of good practices in places where people might not expect them."

Is there a lesson Europe could learn from Central Asia?

I then asked Janina whether, after years of working across Central Asia, there was something Europe could learn from the region. Development conversations often assume that knowledge flows in one direction—from Europe to other regions—but Janina challenged that assumption almost immediately.

"In a way, I think a lot of Central Asian countries are doing exactly the same things that we are doing in Europe, but in much harsher conditions. These are countries that were colonized for many years, where people could not exercise their right to self-determination and decide how to use their own resources. The civic engagement, as we know it in Europe, had to be built from the ground up, and it is still evolving. There are still legacies of that history that need to be addressed.

Then there are the practical realities. These are countries that are sparsely populated. Delivering resources, knowledge and infrastructure to small villages in mountainous areas is much harder than delivering them in a compact country or a large city. The region is also extremely vulnerable to climate change. We know that people with disabilities are often more vulnerable to the impact of these events, so the challenges become even greater.

Some say that the progress is slow. I think many activists in the region would like things to move faster, and I completely understand that. But at the same time, we need to remember that thirty years of independence is actually very little time. We often compare countries to places that have had seventy or eighty years to build institutions, strengthen economies and develop social systems. These things take time."

One of the most surprising lessons she has encountered comes from stories of practitioners working on inclusive education. While outsiders often assume that inclusion is strongest in well-funded urban environments, Janina has repeatedly heard a different story.

"One theme I hear again and again is that schools in remote rural areas are often better at inclusion than schools in capital cities that receive more training, investment and awareness raising. At first, that sounds counterintuitive. But then they explain it. In a small village, the teacher knows the family. They have seen the child since birth. So when a child with a disability comes to school, the reaction is often very simple: of course, this child belongs here. The teacher may never have attended a workshop on inclusive education. They may never have received formal training. But they know what inclusion looks like because they know the child. They want that child to succeed because it is good for the whole community. There is a community spirit there that can sometimes be stronger than any policy or training programme."

For Janina, examples like these are a reminder that inclusion cannot be measured only by budgets, legislation, or technical expertise. They also reinforce a point she returned to several times throughout our conversation.

"The Global North does not own inclusion. There are universal values and universal human rights, and those are non-negotiable. But the way different nations and communities get there can be different.

I think we need more humility when we talk about inclusion. If people are doing things differently, it doesn't automatically mean they are doing them wrong. I've seen good practices in places where people might not expect them, and I think there is value in recognizing that nobody has completely solved these issues. We are all still learning."

Where do institutions get inclusion wrong?

After discussing successful examples, I asked Janina where institutions most commonly go wrong. Many organizations genuinely want to become more inclusive, yet good intentions do not always translate into meaningful outcomes. For Janina, one mistake stands out above all others.

"I think the most detrimental pattern is presuming that I know what you want. We often start with good intentions. We genuinely want to do the right thing. But then we decide that we already know what somebody else needs. And then we get it completely wrong because we are implementing our own vision of what we think people need rather than understanding what they actually need.

That's why I often say that you cannot achieve inclusion by making decisions for people. You have to make decisions with people. Otherwise, even the best intentions can become exclusionary."

She believes that many institutions still struggle with genuine collaboration and often confuse perfunctory consultation with meaningful participation.

"We don't really know how to be collaborative. Collaboration structures are often very arbitrary. We say we're going to set up a working group, or we're going to hold a consultation meeting, and then we think we've done participation. But that's not really how it works. We consult a few people and then go away and do what we were planning to do anyway. The result is that the final solution doesn't necessarily reflect what people actually wanted or needed.

Inclusion requires people to be involved not only in reviewing policies after they have been written, but also in designing them, implementing them and shaping them from the very beginning."

To illustrate the point, Janina shared an example she often uses when discussing social policy and institutional responses.

"Let's imagine there are children living on the street. A common response might be to say: we need to build an institution for these children. We build a building, paint the walls, buy toys, and put everyone there. On the surface it looks like we've solved the problem.

But is that really what children need? No. What children need is a family-like environment and support systems that address the reasons they ended up on the street in the first place. Is it poverty? Is it addiction? Is it family breakdown? Is it a lack of support?

We need to understand the root causes and work with communities to identify solutions that are sustainable. Otherwise, we end up building systems that look good but don't actually solve the problem."

Janina also believes institutions often underestimate the investment required to achieve meaningful inclusion. Too many organizations, she argues, still treat inclusion as a box-ticking exercise rather than a long-term commitment.

"I don't think you can do inclusion on the cheap. That's something people don't always like hearing.

We see examples where organizations hire a few disabled workers, or appoint a token representative, or create a diversity initiative because they feel they should. But they don't invest in training. They don't invest in reasonable accommodation. They don't invest in changing the culture of the organization.

We end up convincing ourselves that we are being inclusive when, in reality, we are putting a coat of paint over serious structural problems."

This is where Janina sees an important lesson for both public institutions and private companies.

"We need to see inclusive solutions as an investment. Not as a cost, not as compliance, and not as a public relations exercise. Real inclusion requires financial resources, human resources, experimentation and learning. It requires commitment over time.

The organizations that understand this tend to make progress. The ones that look for quick fixes usually end up disappointed because meaningful inclusion is a continuous process. It is never something that you achieve once and then forget about."

How can organizations bridge the gap between inclusion experts and decision-makers?

As our conversation moved toward the private sector, I asked Janina about a challenge that many inclusion professionals encounter. Technical experts, activists, and advocates often speak about inclusion through the language of rights, equity, and social change, while business leaders are frequently focused on operations, performance, resources, and long-term sustainability. How can organizations bridge that gap?

Janina believes the challenge exists on both sides, and that advocates themselves sometimes underestimate how differently decision-makers approach these conversations.

"We talked about what leaders get wrong, but this is also something that activists can get wrong. They keep using arguments that appeal to them, through their counterparts who might be speaking a completely different language.

Without minimizing the absolutely fundamental importance of the Convention on the Rights of Persons with Disabilities and all the human rights frameworks that we work with, a regular business representative's eyes are going to glaze over thirty seconds after you start talking about rights being enshrined in conventions and obligations. They need to understand why this matters to them and why it is good for their business.

There are excellent examples that demonstrate this, but we need to communicate them in a way that is accessible to the audience we are speaking to. We need to guide people in a language they understand rather than assuming they will automatically connect with the language that motivates us."

She believes one of the most effective ways to advance inclusion is to build it into systems from the beginning rather than treating it as an additional requirement later on. And here it is essential to explain why having it built in is good long-term investment to businesses and governments alike. 

"I come from a country that saw a lot of investment after independence. We had to build a lot of things from the ground up. Because builders were now using modern standards, they often didn't even know how to make things inaccessible. They simply followed the standards that existed.

Accessibility was built in. It minimized the friction between the commitment and the action. They didn't have to stop and make a decision every time because it was already part of the process.

I think that's where we need to get to. We need future engineers, developers and designers to learn accessibility as part of their education. We need standards that are easy to understand and easy to apply. If accessibility is built into the system from the beginning, then people naturally use it."

For Janina, the same principle applies to business leadership. She believes inclusion should become part of how future leaders are trained, rather than something they encounter only after entering the workforce. Activists being equiped with capacity to explain why this inclusion is essential can make or break the line of communication with businesses.

"I think diversity and inclusion should be studied robustly in every MBA programme. We still spend a lot of time trying to educate people on the job, and of course that will always be necessary, but we should also be creating leaders who already understand these issues before they enter positions of influence.

Ultimately, we need to minimize the decision-making fatigue where leaders feel like they have to choose between profitability and doing the right thing. In reality, one supports the other. But if people have never been taught that, they often see inclusion as an additional burden rather than a strategic advantage."

How important is leadership buy-in?

A theme kept surfacing: leadership. I asked Janina whether leadership in governments and corporations plays a similar role in advancing inclusion and whether meaningful change can happen without buy-in from the top.

Her answer was immediate.

"You can't do without it. In my opinion, you really can't do without leadership buy-in."

"I can give you an example that I like to talk about because I think it shows both the importance of leadership and the fact that inclusion is a lengthy process. Uzbekistan changed leadership about ten years ago. Through the work of disability rights activists and a very supportive UN presence in the country, the message reached the leadership about the importance of inclusion and about investing in underserved populations and populations at risk of exclusion.

That resulted in instructions coming from the highest level in the country. Resources were allocated through the establishment of a national agency that coordinates the process. The agency was staffed with some of the best people because these jobs were some of the better paid in the government machine. Very often when you work on social protection, disability, women or children, people assume those jobs are somehow less important. In this case, the opposite happened."

She described how leadership commitment translated into practical structures and long-term reforms.

"Organizations of persons with disabilities gained a direct line to the agency. They can now communicate, collaborate, demand support, and bring suggestions to the table. They are  involved in implementation.. Standards are being written. Reforms are being implemented with support of the international donors who match the national investment with their own programmes.

We're only talking about a few years since this process really began. Of course they're not there yet. Nobody would expect them to be. But the process is there, and I think the foundations have been built very well.

What I like about that example is that it shows a systemic approach. It shows how leadership can create the conditions for change, and then how that commitment gets translated into structures, resources and implementation."

Although the example came from government, Janina sees a direct parallel with the private sector.

"Whenever there is a good example of things trickling down through a company, a country or an organization, it comes from leadership. No matter how great your technical experts are, how committed they are, they will inevitably hit a glass ceiling unless leadership is truly on board.

And I don't mean leadership that mentions diversity once a year in a speech. I mean leadership that is genuinely committed to it, that allocates resources to it, that measures progress, and that understands why it matters. Without that, it's very difficult to sustain change. With it, things can move surprisingly quickly."

For Janina, leadership is not simply about setting direction. It is about creating the conditions that allow inclusion to become part of an organization's culture, systems, and everyday decision-making. Whether in government or business, she believes meaningful change starts when leaders move beyond symbolic support and make inclusion a genuine priority.

As accessibility and inclusion become increasingly important topics for businesses, investors and policymakers, what opportunities do you see ahead?

Towards the end of our conversation, I asked Janina about the future. Accessibility and inclusion are increasingly becoming part of conversations around investment, business strategy, public policy, and organizational development. While progress is often slow, I was curious to know where she sees opportunities emerging and what developments she finds most encouraging.

Janina immediately pointed to accessibility, particularly in the digital space, as an area where significant change is already underway.

"As of last year,  the European Accessibility Act, which mandates the accessibility of digital goods and services in the EU has become a reality. Since its adoption in 2019, the EU governments and companies have had nearly six years to take the necessary steps to integrate its provisions. 

In a way, sometimes you think: what took it so long? It's such a no-brainer. If your products are accessible, you're going to be able to sell them to more people! 

What I find exciting is that accessibility is moving from a niche issue very firmly into the mainstream. It's no longer just about assistive technologies or specialist products. Accessibility has to be integrated into mainstream products and services. That is a really significant shift."

For Janina, one of the most promising aspects of this transition is that future generations of professionals will increasingly encounter accessibility as a normal part of their education and professional training rather than as a specialized topic.

We are still in a transitional period. There are lots of bumps on the road. But I do believe we are moving in one direction. There is no going back. The more accessibility becomes embedded in education, business, engineering and technology, the more natural it becomes. At some point, people will simply forget how to make things inaccessible. That sounds ambitious, but that's really the direction we should be moving towards."

"There has certainly been pushback in some places." she adds, "We have seen good initiatives being shut down and there has been resistance to diversity and inclusion work. Because we live in a globalized world, those conversations inevitably have an impact elsewhere as well.

But when I look at the bigger picture, I see more organizations, more businesses and more governments understanding their responsibilities. I see more leaders recognizing the value of inclusion. I also see more regulatory requirements that compel businesses to become more diverse, more accessible. 

It may not happen as quickly as activists would like. Twenty years ago, when the Convention on the Rights of Persons with Disabilities was adopted, there were all these rights and commitments that people were excited about. Twenty years later, we're still implementing them. Sometimes that feels painfully slow.

But perhaps this is how change happens. Large-scale change takes time. The important thing is that it keeps moving forward."

For businesses, this shift presents a significant opportunity. As accessibility moves into the mainstream, organizations that embrace inclusion early are likely to be better positioned to attract talent, reach wider markets, and adapt to changing expectations from customers, investors, and regulators. Throughout our conversation, Janina returned repeatedly to the idea that inclusion should not be viewed as an obligation imposed from outside, but as a long-term investment in stronger organizations and societies.

What gives you hope?

As our conversation came to a close, I asked Janina one final question. After decades of working in disability rights and inclusion, after seeing both progress and setbacks, what continues to give her hope?

"I'm 48, so I'm a little short on hope." she continued, "but what gives me hope is that I think I can still see the potential in more collaborative activities around disability inclusion. If I thought that we had reached as far as we could reach, then I would probably be out of work, which would be kind of good for everybody except me. Or I could say that we can't get anywhere because we've gone as far as we can go. 

But I don't feel that. I feel that we are not where we want to be yet, but there are still so many different channels that we need to explore before we become desperate.

I see hope in building coalitions with other movements. I see hope in working with environmental activists. I see hope in building alliances with large businesses and having them integrate diversity, inclusion and accessibility into their daily operations. I see hope in education. I see hope in culture."

She became particularly animated when talking about the possibilities that emerge when disability inclusion intersects with new sectors, audiences, and forms of representation.

"A month ago there was the Met Gala in New York, and disability was very visible there. I don't really care about fashion—but the fact that we're talking about disability in spaces like that is exciting.

The fact that we're seeing these intersections emerge is exciting. It means disability is no longer being confined to one conversation or one sector. It becomes part of broader conversations about society, culture, representation and participation.

I'm very curious about what those collaborations can become, and I think there is a lot of potential there."

Before ending the interview, Janina also wanted to raise one final point—one that she feels deserves more attention within the disability movement itself.

"I would really like to see more young people involved in disability activism. This is something I see a lot in Central Asia, but not only there. Young disability activists often don't like rigid structures, and understandably so. They want to do things differently. They want to create their own spaces and approaches.

Sometimes it can be difficult for them to find space within existing movements. Instead of joining traditional disability organizations, they often join broader youth movements. There is nothing wrong with that, but I think the disability movement needs to acknowledge that we want to see young people and young women present on an equal footing.

We cannot keep talking about inclusion while failing to create space for the next generation of leaders."

As we wrapped up our conversation, I found myself returning to something Janina had said earlier. Throughout the interview, she spoke about collaboration, curiosity, learning from unexpected places, and remaining open to new ways of thinking about inclusion.

When I reflected that she seemed hopeful because she remained curious about what was still possible, she smiled and agreed.

"I'm hopeful because I'm curious."

Janina Arsenjeva is an international expert on disability-inclusive development, social inclusion, and human rights. Through her work across Europe and Central Asia, she supports governments, international organizations, civil society actors, and private-sector stakeholders in advancing meaningful and sustainable inclusion.