Charley Connon: I’m glad to have you here today. Let me start with a really general question: what led you to study the politics of disability inclusion in post-Soviet cultures? And why do you think it's important to shine a light on this particular issue?  

Svetlana Borodina: Thank you for having me. This is such a great opportunity. So, I grew up in Russia in this part of town that was marked with sonic traffic lights that had caution signs, “blind people in the area,” and I lived not far from a special library for blind people and a “special factory” that was part of the network of the All Russia Society of the Blind, a factory where blind people were supposedly working. And throughout all my childhood, I would pass by these places and I would never see any blind person anywhere. It always perplexed me. First of all, why is blindness so important that they alert the entire area that blind people are in this area? Why are other differences not marked in such a way? And why are there areas in which only blind people allegedly hang out or meet? As a child didn't have any limited meeting area, I thought I could go anywhere. So these questions made me very curious. Fast forward to graduate school, and I started my research on the lived realities of blind people in Russia and what happened after the dissolution of the Soviet Union—how their lives changed as the political and socio-economic system changed, what experiences they had, what social position they occupied. But all of the blind activists I was working with were trying to figure out “disability inclusion.” They were trying to understand how to materialize disability inclusion, what happens besides and beyond the slogans, such as when we say that we need to include people with disabilities and to ensure equal participation, what do we actually mean and how do we do it in a country with such a long history of disability exclusion.  

Because they were so focused on inclusion, and because they were trying to build bridges with other disability groups and trying to reach out to abled people and change the discourse and sentiment around disability among abled people, I started thinking about this, too, and the more I worked, the more I realized that disability inclusion transcends any particular social group. And I think that is one of the answers to your question of why it is important. Disability inclusion concerns everybody because in disability studies there is this cliche that if you live long enough, because we are all embodied beings, we will experience some form of disability or form of corporeal or mental vulnerability at some point. And the more I worked with my interlocutors in the field, I realized that, yes this is true, but we also see that social positioning exposes some vulnerable groups to more risks and so increases the risk of developing various kinds of impairments. For example, some people live in toxic areas or in territories that are prone to militarized conflict, or some people don't have sufficient socio-economic means to maintain and invest in the development of their health. There are so many factors that in fact create disability sometimes. So my work looks at the issues of support and inclusion and ensuring a welcoming life for people with disabilities, either for those who have disabilities now or who may develop disabilities later, or who have a family member with disabilities. Ultimately it is work that that is fundamental to everybody, whether disability is present in someone's life or not.  

CC: Did you grow up in the Soviet Union? 

SB: I was born in 1990, so I was a Soviet citizen for a year and a bit, so not really. 

CC:  When you were growing up, you mentioned seeing these signs and the specific factory for blind individuals. How do Russian officials and the government toe the line between inclusion and othering? Some may say that by including these signs, they're creating a space for these people and making them known, but it also creates this division between normal and non-normal. And so, moving forward in the future, how do you marry those to inclusion or othering? Is there a solution?  

SB: First of all, we need to understand what it is that people with various conditions think they need to feel supported and how they experience that support. This is essential, because people with disabilities have very often been excluded from the development of inclusion plans and programs. But it is very interesting, this tension between normalization and special support, and it is a tension I have observed in Russia.  But first let me discuss what inclusion is and is not.  

In Anglophone literature, inclusion is written about as a tool of social organization that engages any non-normative groups or any kinds of differences. We can talk about gender inclusion, racial inclusion, or disability inclusion, and we see that the common denominator is everyone's humanity, and we include people without trying to normalize them. In Russian, “inkluzija”—the word for inclusion—is not all of that. Since the 2010’s or so the expression has developed exclusively as a disability-related concept, though I have observed different ways in which Russians understand it. Some say that inclusion is the provision of special services to people with disabilities, for example, by delivering social or medical services. Another interpretation is simply physical presence, a sort of checkmark inclusion. An example of this is when, in 2014, Braille plaques were placed on mass transit throughout Russia but weren’t necessarily put in reach of anyone, and were therefore unreadable. This interpretation is important in that it has a kind of collateral effect on real inclusion, making sighted people think they are actually including blind people in society. Lastly, another group of people thinks that true inclusion is when we redesign our society so that people with disabilities are equal participants, so that they are as necessary and as valued as people without disabilities and are an integral part of that redesign. So the question becomes, depending on how we view “inkluzija,” are we progressing as a society? Do braille plaques help anybody if they are inaccessible? It is a complex question, because the visibility of disability inclusion is also important.  

And the question about normalization is also very difficult, because among people with whom I have worked—the majority of whom are blind people, and to a smaller extent wheelchair users and deaf people, but I’ve never worked with people with mental disabilities—it is highly valued to be seen as normal. So there is this pressure that comes from themselves and their desire to be seen as just like everybody else and not as exceptional people. But on the other hand, they may have special needs. There are debates on how we simultaneously produce special services and also try not to separate blind kids. How do we provide the context in which blind and sighted kids can engage with each other? In an inclusive school, ideally each child receives the necessary support in the form of a tutor or different technologies. But in reality, this doesn't always work because of the lack of funding and resources.  So, this is very complex and there is no simple answer to your question. There are too many interests involved and too few resources available in the in the domain of disability inclusion.  

CC: You touched on the important point of including stakeholders within the decision-making process, which I think is something that we don't do enough of with regard to a lot of different topics like making rules and structuring society. On another topic, there have been a lot of UN and international treaties on the treatment of disabled individuals taking into consideration their needs. How close would you say Russia adheres to customary international law regarding the rights of the differently abled?  

SB: Russia signed the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2008 and ratified it in 2012. This was a very important step. The 2010s in general were this decade during which the discourse about disability inclusion and “inkluzija” grew, and so it became a familiar word even to non-specialists. In 2011, Russia launched a federal program called “Accessible Environment” that channeled substantial funds to make spaces, services, and information accessible to people with disabilities. And right before ratification, in 2012, there were some sporadic laws that did change various regulations such as adding mechanisms to ensure people with disabilities could vote and broadening the use of Russian sign language, but it wasn't systemic. But by the end of 2012, in many museums and publications, questions about disability inclusion were discussed without focusing exclusively on violations, and people began to figure out how to implement disability inclusion. 

By 2014, there was a series of big federal laws designed to systemically change Russian legislation to introduce nondiscrimination as a principle, to ban discrimination against people with disabilities on a broader level to ensure accessibility across domains. We're talking about built environment, communication, voting, public transit. And I think it also changed a few things in the domain of health care and social protection. So the laws are being made consistent with the UNCRPD.  If we speak in particular about inclusion and social participation, which is, I believe, the third principle of the UNCRPD, Russia provides free rehabilitation services to people with disabilities and habilitation services to those people who are congenitally disabled. And assistive technology is also provided and covered by the state. But one of the biggest criticisms that I've come across is the absence of mechanisms to ensure the law is implemented. For example, the concept of “reasonable accommodation” is not defined very clearly. And so there are still gaps.  

CC: From your anthropological perspective, how are the rights of differently abled individuals infringed upon in Russian society, on an every-day level? 

SB: I really like that you bring anthropology here because I think that's what anthropological research does. It accesses this moment of what happens after the law is in place. What do we do when we have this normative base that is supposed to protect and support people with disabilities? One simple example is that in Russia, companies that have more than thirty-five employees have quotas for employing people with disabilities—the range is between two and four percent. But we don't see such massive employment of people with disabilities. Or we see practices of employment such as the “dead souls” practice, when a company hires a person with a disability and they are paid a very minimal wage, just to prevent this company from paying fines for noncompliance with its quota. But there is no opportunity for these people to actually contribute to work if they wanted to. 

And this is a widespread kind of problem when employers, despite the legislation, do not want to make the effort to figure out how to accommodate a person with a disability.  When we look at the cultural discourse and the representation of various forms of disability—such as when cartoons present blind people as tricksters—how does this affect how a child understands blind people? How does the mass media’s tendency to use the rhetoric of pity and tragedy toward people with disability fuel the stigma that is associated with disability? And so anthropological research addresses the conflation of all these various factors, starting from systems of representation to spatial and temporal organization of life. How does it happen that able people and disabled people are not meeting each other? There is inaccessibility, stigma, and illiteracy about the rights of people with disabilities, both on the part of people with disabilities as well as abled people.  

But when we understand the different factors that preclude people with disabilities from participating, and when we understand what we mean by “participation,” it is helpful.  In the past, we saw so many projects that were supposed to increase disability inclusion that were not very effective, so it is really important to look at how people with disabilities approach these questions. Anthropological research looks at the complex social system—wealthy or poor, access to education and family support or not—to see what factors and social forces push people with disabilities out. It looks at how systems prevent people from accessing things that are generally distributed to non-disabled people.  

CC: Are there ways that Russia's Soviet past has influenced public sentiment and culture around inclusion in public spaces? 

SB: Yes, and it's also a very complex answer. For example, with the All Russia Society of the Blind and the All Russia Society of the Deaf, these two groups received state support and managed to develop a very well-functioning network of enterprises, and in a planned economy, they always had orders, produced things, were profitable, and invested in the development of their community and were well remunerated. In fact, older people that I’ve interviewed have expressed an appreciation for that time when blind people had resources and were able to prove that they were productive citizens—which in the Soviet Union was very important. Of course they were also very isolated, set up in raioni or districts that had specific infrastructure for those with disabilities. People with disabilities have written memoirs about suffering under inaccessibility and a system of paternalistic care that provided only the minimum for survival. Even the pensions and basic social services of the time were nowhere near enough to support a life that abled people lived. And once the planned economy was gone—and along with our post-industrial society no longer valuing manual labor as before—the All Russia Society of the Blind began facing significant economic problems. And yet, a desire for paternalistic care has lingered, with people still expecting the state to provide support to people with disabilities. The state does currently provide support, although there is a debate of whether it is sufficient or not. The pensions that people with disabilities receive are minimal, as are services from social workers (such as house cleaning or a deliveries); people do not have access to more intense care. So the system needs more resources and support.  

One example of the complexity of disability inclusion—when we stop trying to separate people with disabilities into spaces with special infrastructures like we did in the Soviet past, and instead try to develop accessible environments in which we all partake—is when people with disabilities seek employment at just a regular company, offering their services and expertise as valued professionals. What happens is that someone's ability to secure a job becomes a sign not only of their success, but of their rejection of the stigma associated with disability. This is certainly another problem in and of itself, that when we see this neo-liberal ideal of an independent and economically autonomous individual with a disability, it’s a success story. Yet, it rules out the realities of so many people who live with chronic pain, or people who cannot achieve this ideal, because of the lack of resources to make it there.  

CC: We see those neo-liberal ideas also reflected in American society as well—the pull yourself up by your bootstraps ideal—but that simply does not reflect the complete reality of what many people face on a day-to-day basis. Are there other large obstacles to equality and complete inclusion for non-normative individuals, disabled, LGBTQ plus, genders, etc.?  What are the largest obstacles you would say to equity in modern-day Russia and maybe even just around the world?  

SB: This is a very big question, but I'll stick to Russia just because it’s actually a very interesting case, because it connotes the distinction between inkluzija and inclusion that I discussed a bit earlier.  

One thing is that people with disabilities are a very particular minority in Russia, and their experience and public treatment is fundamentally different from the social positioning of LGBTQ plus people, or ethnic minorities, or religious minorities, etc.  Their shared experience is the experience of being oppressed, but the differences are so profound in the way they are treated and perceived and they face really different problems and challenges. Some groups are made into social threats, which immediately mobilizes hatred. But people with disabilities occupy a very particular place because of these other minorities. I can't think of any other minority that has seen so much positive legal change in the past 10 years. This is fundamentally important when we think about the obstacles that they experience as opposed to those that other minority groups are experiencing.  

The largest obstacles are the lack of mechanisms to ensure the implementation of the law, the privatization of medical services and social work services, and a lack of resources. To get support, there are really complicated bureaucratic procedures and an incredible amount of red tape.  

The Russian system of social protection is request-based, which means that people with disabilities need to request services, which in itself constitutes a barrier because not everybody has the ability or resources to navigate those extremely long corridors of submitting documents and figuring out how to get access to prosthetics or access to some benefits that they're entitled to by law. There is also cultural stigma: the proliferation of neoliberalism and ideas of success and individualism favoring productive, independent people, and a focus on rehabilitation. Not that we don't need rehabilitation – but we need to value human life even if a life cannot be rehabilitated. There is also illiteracy and a lack of access to mechanisms that ensure implementation of one’s rights. People don't know these rights, but if they do know these rights, they need to understand what they can do to make sure to make educational institutions or employers act in accordance to those rights. 

 A lot of social services and programing connected to disability inclusion in Russia has been outsourced to NGOs, which is a complex issue because NGOs in the past relied on international donations as a funding stream, and now the Russian government’s foreign agent law has put quite a strain on those relationships. At the same time, we have recently seen an increase in domestic funding. Unfortunately, the dependency on irregular, project funding, definitely effects the kinds of disability inclusion programs that NGOs can implement. Because of project-based funding, we see that disability inclusion appears as limited islands of inclusion. In other words, there hasn’t been a systemic and systematic restructuring of society, such as by embedding people with disabilities at every level of decision-making or every segment of social participation and life. 

All of my examples, again, are rooted in the demographic with whom I have worked; for example, I haven’t really work with people with mental disabilities, for example. But we do really need to acknowledge the very uneasy and difficult situation with institutionalized care in Russia, especially the internaty, where people with disabilities or mental disabilities in particular live and receive institutionalized care, and where the pace of reform has been very slow. There are so many problems with them: they're understaffed and overcrowded, among other problems. We need more resources and attention to support these people. 

CC: Expanding the reach of these institutions and changing the culture seem to be the main things that are in the way of fully inclusive public spaces. Would you say that, given your work and research, that the future in Russia is promising? Do you see a sea change ahead? When do you think we could fully realize this utopian future of full inclusion? 

SB:  When I came to the field, I wasn't sure what kind of people and experiences I would encounter. One thing that I did see and that to me is a beacon of hope is the energy of people who work in the domain of disability inclusion. They see the value of it and they work tirelessly to make disability inclusion a daily reality. This happens among NGO workers, among people who don’t necessarily work in the field but who volunteer and care about this topic, who provide pro bono services, who are in the museum community or in cultural institutions. I can see thick social networks emerge that are made of people who care about inclusion.  

One of the consequences of the 2014 laws was that museums and other cultural institutions began to adapt their programs to be more inclusive. Then, they began to serve as generators of discourse by hosting conversations and thinking spaces to talk about how we can do inclusion better, how we can create programming that not only increases visibility or presence of people with disabilities but gives them a way to participate in designing our exhibitions or designing how museums present art. And these places also offer other frames through which to engage and think about disability besides the trope of pity or the so-called “super crip” narrative, where people with disabilities become praised for these extraordinary achievements, such as a blind person who climbs Mount Everest.   

I'm not saying "full inclusion” will happen immediately, but gradually we are seeing that especially with the help of NGOs, people with disabilities can have the chance to design a project, secure funding for it, and then implement it in the way they want it to be implemented. But I would also caution against this idea that one day we will wake up and it's going to be great. Disability inclusion is not something we’ll just achieve, because we’re human and we’re so different, and because some of the abilities and needs don’t always go together very well. Negotiating the best solutions and how to share this world together is an ongoing process that we need to commit to always be open to.  

CC: It definitely seems like with anything, it's a slow march towards progress. And the work that you're doing is helping ensure that we don't regress and that we continue to make strides to create a more inclusive environment for everybody. Because injustice anywhere is a threat to justice everywhere. We're almost out of time now, is there anything else you'd like to add? Anything you wish to stress that you haven't already? 

SB: I think that in general, we need to keep asking ourselves what we actually mean when we say things like equity and inclusion. When I speak about my research to laypeople, they often seem to have this immediate understanding, “oh yes, disability inclusion.” But when I ask them what they understand it to be, I've gotten so many different answers. And I think that it is really important to keep ourselves always questioning what we mean when we use these words, and to make sure that people with disabilities are integrated designers of the programs and changes that we that we all want our society to have.