Alexandra Filippovskaya — inclusive programmes department coordinator
at the Garage Museum of Contemporary Art
In this article, I will examine the field of disability art, its connection to the fight of people with disabilities fight for rights and equal access, the aesthetic parameters of the field, and the issue of self-identification of artists with disabilities. The article systematizes such notions as “inclusion” and “diversity” through the phenomenon of disability art, new to the Russian context. The article was written based on a closed discussion held in September 2020 with Russian and foreign theorists and practitioners in this field.
This article was published in Issue 1 of Accessibility and Inclusion in Contemporary Art: transitory parerga [Dostupnost’ i inklyuziya v sovremennom iskusstve: transitory parerga], edited by Vlad Strukov.
In the contemporary Russian context, inclusion is becoming more and more synonymous with such words as “accessible environment” and “barrier-free environment,” which typically connote physical accessibility for people with disabilities. This is primarily connected with an inaccurate interpretation of the notion itself and its derivatives. The term “inclusive” is seen by most people, for instance, to mean “special,” “separate”—in other words, a politically correct term for disability. Another example of inclusion’s perception and misunderstanding of its initial principles, based above all else on equality and respect, is the paternalistic approach to people with disabilities in Russian society. A person with a disability is not seen through the lens of the sociocultural concept of disability1, but through the medical one (Yarskaya-Smirnova and Bolshakov 2019: 17). This attitude, as if to a patient, can be traced in various spheres, including museums. Society tries to make decisions regarding a person as a “patient” on any matter in any sphere of that person’s life.
The very notion of “inclusion,” on the contrary, is not limited to the mere physical characteristics of a space and under no circumstances is to be seen as a tool of segregation. Inclusion entails questions of equal rights and ethnic, gender, and cultural diversity. Inclusion is a set of various tools whose primary goal is the creation of comfortable conditions for all people, regardless of their membership in a given social group. Inclusion is becoming a part of sustainable development for both businesses and non-profit organizations.
It is the fight for rights and equal access, the recognition of every person’s uniqueness and their values that give rise to all kinds of movements. One such movement is disability art, which came into existence in Europe (and specifically the United Kingdom) and the United States in the 1970s. In order to examine the concept of disability from the perspective of the disability art movement, The Garage Journal held a discussion with international practitioners and theorists of contemporary art. This discussion was an attempt to reflect on and systematize ideas and vectors of change that were new to the Russian context. Such reflections, in our opinion, are necessary to avoid stagnation and promote further development of the idea of inclusion in Russian cultural institutions.
Alexandra Filippovskaya, inclusive programmes department coordinator, Garage Museum of Contemporary Art, research consultant on The Garage Journal 01, “Accessibility and Inclusion in Contemporary Art: transitory parerga”; counsellor specializing in people with migration and forced resettlement experiences, co-author of inclusion and diversity projects.
Vlad Strukov, Editor-in-Chief of The Garage Journal: Studies in Art, Museums and Culture; multidisciplinary researcher and curator working at the intersection of art, media and technology. Professor at the University of Leeds (United Kingdom), where he works with worldwide visual culture.
Anton Ryanov, artist, disability activist, member of the Androgyne and Centaur art group, recipient of the 2019 Innovation Prize, member of the 2020 Innovation Prize expert council.
Vera Berlinova, audio describer, member of the Androgyne and Centaur art group, feminist and disability activist.
Tony Heaton, artist, disabled artist rights advocate, former executive director of Shape Arts, founder of The National Disability Arts Collection and Archive (NDACA).
Letty McHugh, artist, writer. Since 2020, associate artist with Disability Art Online.
Elizabeth Howie, Professor of Art History at Carolina Coastal University (Conway, South Carolina, USA), one of the authors of Disability and Art History (2016).
Alexandra Filippovskaya: How did the idea of disability art come about, and how was it connected to the disability rights movement?
Tony Heaton: Disability art is art defined by the artist’s personal or collective experience of disability. I mean that when we talk about disability, we aren't talking about our physical body; we aren't talking about the fact that this person is blind, d/Deaf or in a wheelchair; we're talking about disability as a social construct. For example, in cultural institutions, people with disabilities are discriminated against; they become disabled because the former does not provide the infrastructure they need. For me, this is primarily about discrimination, not about health. Of course, the state of the physical body has an impact on how a person acts, what they do, but disability art is about equal inclusion in the life of a society. The disability art movement emerged, in my opinion, at a time when people began to share their stories about oppression, about the inaccessibility of education, about life in the ghetto, about their inability to fully participate in society.
Letty McHugh: I’ve only been working with the disability art movement for the last year and a half since I first became disabled. When it comes to the culture of perceiving disability, it's important to account for the generational factor for specific eras. I was very lucky: I didn't encounter any barriers along the way. Disability art covers a very wide range of different fields. The main thing about disability art is creating a community that supports each and every person's creative endeavours. For me, in this context, I still have to answer the question: “How can I overcome the barriers put in front of me by society?”
Vlad Strukov: We have two options for the social approach to understanding disability art. The first is connected to the creation of a community and the understanding of this art through that community. The second is the relationship between the artist and power, where power can be seen in various forms: the institutions, canons and other things. As a result, I would like to clarify: are aesthetic parameters completely outside the considerations of disability art?
Tony Heaton: I think there a disability aesthetic. When I worked at Shape Arts, we had an exhibit called Shape Open (Shape Arts, 2012)2. Artists with or without disabilities were welcome to participate, but the work itself had to be somehow connected with disability.
Based on the applications, it was apparent which works were created by artists without disabilities and which were created by artists with disabilities. That’s why I would say that there’s a very clear disability aesthetic. It is connected with authenticity, insofar as in the works by artists with disabilities, you can see their subjective experience. Sometimes, this is a subversive or hidden set of semiotics woven into the work. People with disabilities can see these messages immediately. There are specific markers and ways to create works of disability art. There are works that can be taken very differently by people with and without disabilities.
Sometimes this is called crip culture. For instance, the word cripple is now forbidden—it’s considered offensive, but we believe that it is important to actualize such words in our context. I have a work called Raspberry Ripple in which people with disabilities immediately see these meanings, while people without disabilities don’t always get the point.
I think that artists with disabilities create their own aesthetic that is obvious to their community but can be understood by the largest number of people from various social groups.
Vera Berlinova: We encountered the problem of disability art’s perception when we made our first work called Self-Portrait. I recorded a screencast of Skype where Anton Ryanov (another member of Androgyne and Centaur) read a Dmitri Vodennikov poem half-naked, while a slide show with photos of work by popular artists including Pavlensky’s performance at the FSB building and an Egon Schiele print. The poetry itself was dedicated to the body and corporeality.
When we showed our work to people, we encountered different reactions. We understood that for many people, including people from the art and culture field, this work was interesting, but it put almost everyone in an awkward position because everyone was uncomfortable watching it. In my opinion, abnormal physicalities are is not well represented in art: people just aren't ready to see them. Of course, there are also works made by artists whose disabilities you can't guess just through their work. This kind of disability art should also be present. Because everyone is equal and everyone should be equally represented in art.
Anton Ryanov: In the Russian context, the situation is more complicated. The USSR was a social state in some senses, but it wasn't easy to take the initiative. Communities could express themselves to the extent that the Party and the government allowed them to do so, so there was no domestic movement of the kind that we see in the UK.
In the 1990s, it was also difficult to talk about creating an active community of people with disabilities, which would defend its rights as a huge unified movement. This is also due to the fact that in Russia, above all else, it was the medical model of understanding disability (rather than the social one) that dominated teaching. Taking into account those educational practices, conditioned through very strict discipline and which are used in Russia, a person with a disability simply cannot become a subject that would take the initiative.
Only now can we talk about the appearance of a kind of disability activism, a conscious reflection of our experience. You can refer to what Alena Levina does, combining disability and feminist activism with the representation of her experience of her own disability. Of course, from the point of view of disability art, as an art movement, it is very difficult to talk about this in the Russian context.
Only five years ago, Garage created its inclusive department. This is quite a short time in historical terms, but it already says a lot. Now it's important that we have an awareness of disability art as part of a larger trend, giving people a voice who do not currently and never did have one.
Here are the stages of progress throughout the history of Western society: workers' struggles for rights and self-representation, the struggles of various ethnic groups that were previously unrepresented, and the struggle of women. In this sense, it seems to me that inclusion, disability art, and queer art are just one more stage of this movement, people who possess a different bodily experience acquiring a voice of their own.
Alexandra Filippovskaya: Artists who do not have disabilities but work in this field and try to represent disability in their work: are they part of disability art? Or should a person identify with that community?
Tony Heaton: Artists without disabilities who respond to the subject of disability in their art can instead be categorized as working with art and disability. For example, if an artist with a disability draws a flower, it is not disability art, but if an artist draws a flower while identifying themselves as a person with a disability, it is also not necessarily disability art, which can only be created based on personal experience of disability, strictly speaking.
There are so many countries in the world that are just beginning to understand that there is an emancipation process that people with disabilities need. This is achievable through creative work, like theatre, choreography, and visual arts.
The organization where I worked for ten years (Shape Arts—Ed.) has existed for more than forty years. It was founded by a dancer who sincerely believed that people with disabilities can dance.
I would like to offer an example of another organization, Grey Eye. This is a theatre company led by people with disabilities; they train actors with various forms of disability. In other words, there are a number of organizations headed by people with disabilities who work in this field, using their experience. It seems that this kind of organization has provided an opportunity for people with disabilities to express themselves through creativity.
The only thing I would like to add is that when Shape Arts announced that Shape Open would be open to everyone without exception, people with disabilities began to criticize the idea. Our argument? If we don't exclude people without disabilities, then we are not excluded from their world.
Elizabeth Howie: When we talk about the aesthetics of disability and the aesthetics of disability art, the book The Aesthetics of Disability by Tobin Anthony Siebers (2010) immediately comes to mind. The author claims that abstraction, which distorts the forms of the human body, is also a form of disability aesthetics. In his opinion, abstract art appeared when people with disabilities were hidden away in institutions, away from the public eye. There was a terrible conflict between the rise of abstract art and the presence of people with disabilities in society. In history, very little has been said about disability, including in the history of art. We need to take responsibility for the presence of people with disabilities, also represented in works by artists who had no idea about their problems. It is also important to remember the works of artists who had disabilities, such as deafness. For example, take Jacques Louis David and his facial injury, or Toulouse-Lautrec and his disability. Paying attention to these artists will allow people with disabilities to look at the past and find models there, to see their experience reflected.
Anton Ryanov: I want to think back to my first work, made together with artist and independent curator Sonia Pigalova: a film called The Organ of Perception. Sonya filmed me interacting with the world. In particular, she drew attention to my use of a speech synthesizer for reading, drew attention to the nature of my body language. This was completely new to me. Before that, when I was photographed by people close to me, they usually tried to force "normal" poses that didn't reveal a person with cerebral palsy or with some other experience with differing motor faculties.
The experience of working with Sonya in-process and afterwards, when I looked at the material, became an important stage of my self-awareness. For the first time, I saw my motor experience fully presented without any retouching. My experience, on the contrary, is something aesthetically perceivable, something tangible. It was all in the gaze of an artist who has no disability.
The same is true in my work with Vera: it's important where her vision and my vision meet. From the perspective of representation and creating something, understanding myself, including as a person with a disability, it's always important for me to interact with people. If the disability art movement were developed in Russia, it would be understood as interaction with people with disabilities. At the moment when I began to take an interest in contemporary art, there were almost no people with disabilities in the field, so an important stage in my practice was working with contemporary artists and artists without disabilities (who directly contacted me because of their aesthetics and leftist ideology). They understood my uniqueness as part of my identity, not as something that stigmatizes me.
Vlad Strukov: I have the impression that we see disability as a kind of permanently fixed category. Can we talk about disability art from a position of more flexible contexts that are more process-based and not necessarily set in stone?
Vera Berlinova: “Disability” is a very flexible concept and a fragile state. You can enter it suddenly and leave it just as quickly. There are still conditions not recognized as disabilities at various levels. For example, I suffer from terrible migraines. Migraines are barely studied as a phenomenon, but they make life extremely difficult. Among these conditions might also be states of increased and chronic anxiety. In general, it's very hard to explain to people that even with a normal, typical outward appearance, complex processes might be taking places inside you that keep you from performing certain functions.
Anton Ryanov: In Russia, disability is associated with a passive attitude. My performance Fly By and Unite, the film essay Infrared May, or the performance Juggler Conference—these projects are all connected to historical and cultural material, my experience as a philologist, and my interest in the Russian avant-garde and modern leftist ideologies. In these works, I didn't present myself as a person with a disability, but gradually, while interacting with my friends in the art field and my participation in various inclusive projects, my understanding of disability changed. Because of the way that a person with a disability is socially marked as passive, it became part of my understanding of myself, part of my understanding of my own bodily experience, and thus began my transformation. I've come a long way from understanding disability as a social exclusion to understanding it in terms of self-awareness and the absence of fear when representing your own uniqueness. Participating in inclusive projects can be compared to what Karl Marx called “proletarianism.” There are people who are simply workers, and there are workers who have found their place as a social group. In a sense, this is the path I took: from unconsciously passive to active.
Alexandra Filippovskaya: It’s true that in Russia, people often don’t even know about disability art as a phenomenon. There are also many people who see creative work by people with disabilities as a hobby, or through the lens of “Well, at least they did it.” I have a question related to that. Should we make allowances for a person with a disability when we evaluate their work, or should we treat work by people with and without disabilities on equal terms?
Letty McHugh: Should there be a culture of accepting lower-quality works created by people with disabilities? I don't think so. This is a very problematic position. I wouldn't want someone to look at me through such a lens. I believe that my work is recognized because I am a professional artist who demonstrates a certain level of quality. I have my own artistic merits.
I know that in the United Kingdom, there is a very widespread discussion about the critical approach to disability art: is there enough quality criticism of this art form? This is the position I hear most often from the mainstream art world when people from the mainstream start saying something about disability art. For example, one curator recommended that I never write anywhere that I am an artist with a disability. In his opinion, this would attach a stigma, and people would only buy my work because of that footnote.
Tony Heaton: You have to challenge that kind of behaviour, the act of oppression. You have to understand that disability art is a political phenomenon. It’s not about physicality and not about the body.
The oppression is in how museums don’t provide sufficient infrastructure3 for people with disabilities. The oppression continues when a curator says, “Don’t say that you have a disability.”
If you, as an artist with a disability, can't get into a museum's collection, then the problem is not with you, but with the museum, with the curator, with the people who make the decisions, because they don't understand the nature of the products that people with disabilities create. We have to tell the general public about disability art and about the art that artists with disabilities create. You need to ask questions. Why do you even discriminate against the work of people with disabilities? Why do you make your judgments based on your own position as a person without a disability?
Anton Ryanov: What Tony is talking about is a totally demeaning situation. The accessibility of the museum and the field, equal opportunities for different artists are an inextricable part of the contemporary cultural process.
The artist presents a statement of some kind. If it's important to them that this statement includes their experience as a person with a disability, then this should be taken into account. If not, then no. I gave an example of my work where my ownership over my identity as a person with a disability was important to me. But there were other projects in my artistic practice where this wasn't important to me, like The Organ of Perception, which was dedicated to the specific nature of my body language and how I perceive it. The key themes of that film were mediation and media-mediated perception.
Alexandra Filippovskaya: People with disabilities often encounter acts of oppression but still fight for their rights: this is what we’ve been talking about throughout this discussion. But if we talk about people with developmental disabilities and self-advocation, what is the situation with their rights on the art market?
Letty McHugh: In 2019, I interviewed the director of an organization called Pyramid of Arts that works with people with developmental disabilities.
People often think that when we talk about people with mental disabilities, those people always make something simple and clear. Rainbows, for instance. But in fact, the works by the artists we talked about in the interview were politically meaningful. These weren't topics that someone assigned to them. The artists wanted to express what they encountered in life through their works. So if we say that people with intellectual disabilities can't motivate themselves, this is not entirely true—but they do need some support.
Anton Ryanov: Here I’d like to step away from this fairly narrow subject and remember that in European culture, somewhere beginning with the 19th century, there appeared a certain cult of the “crazy artist.” Van Gogh is one clear example. In the discourse around art from the last two centuries, a stereotype of the artist as an insane person has been cultivated for whom this characteristic came at birth—a kind of mental characteristic. Today, we have the task of understanding the degree to which a curator or other museum employee gives an artist the opportunity to speak about their mental experience, their worldview. In these cases, where are we representing an artist with a unique psychological trait and where does it become the exploitation of their artistic statement, a curatorial speculation that makes the stigma even stronger?
Alexandra Filippovskaya: In your opinion, what lies ahead for the disability art movement? What trends do you see in its development?
Letty McHugh: To answer your question, I will have to go back a bit to the previous subjects. We said that if a person with a disability creates a picture with a flower, for example, then the work can't be called disability art. I hope that we can move away from this concept in the future. I personally want to do so because disability art can be defined as any art created by people with personal experiences of disability.
Before I applied for a grant for artists with disabilities, I wasn't sure I would find a home in the disability art movement. I wasn't sure if my work would fit into this context somehow or match with its aesthetic, and I didn't know if my work was sufficiently politicized for the field. But disability art is a very broad trend, and I was accepted. It gave my career a boost, even.
If we are going to define disability art too narrowly, then people with disabilities who encounter discrimination will lose one channel of support.
In other words, if you're an artist with a disability and you face discrimination but can't become part of the disability art movement, then where do you go? That's why it would be better if we expanded these narrow definitions a little in the future, to be sure that everyone can find a home in this environment.
Tony Heaton: On the one hand, it’s extremely important to remember that disability really isolates a person because we have our own individual traits that affect us in a specific way depending on the situation in which we’re living. If we as people with disabilities are going to earn a living with our creative work, if we have work, then we’re going to depend on others less than if we live on handouts. We will feel completely different from unemployed people with disabilities. There is a huge gap between dependence and independence here. That's what I always talk about: power and rank. The more power that people with disabilities have at their disposal, the power to change something, official titles, and so on, the better their situations will be. I really hope that this will continue to develop.
In my opinion, we need to keep fighting. Each generation faces its own set of gatekeepers who block our way. They don't understand what it's like to have a disability, so we have to hold all of these equality and diversity courses over and over again. We need more people with disabilities to work in politics, to get involved; we need more allies in this work. It really would be good for people with intellectual disabilities to be the leaders of their organizations, but there should be people without disabilities who work together with them—who do not take on the decision-making responsibilities themselves but work as mediators and allies.
In this sense, I recall Mark Steen, the head of the Outside In day-care centre for people with developmental disabilities, which teaches them visual arts. He told me how he fought against discrimination against the creative work made by people who came to his centre. After he arrived, employees stopped throwing out the attendees' work. On the other hand, in the organization Heart 'n Soul, which works with musicians who have developmental disabilities, the leadership is made up of people without disabilities, yet it maintains its philosophy of equality and partnership.
Vera Berlinova: I get the feeling now that in Russia, we are at the very beginning of this journey. We have several artists working in the field of disability art and deal with inclusion, but their numbers are negligible, and I have a feeling that we are living in an abuser state. Many of us have very difficult relationships with the state: not only as artists and artists with disabilities but also as members of other “excluded” groups. As a female artist, I am acutely aware of this tension.
Ten years ago, I witnessed the beginning of the inclusive movement. I had just finished studying to be an audio describer, and when I was in my first year of classes, nobody knew what audio description was. Together with the Reakomp Institute, where I studied, we tried to lobby for a law to advance the progress of audio description. I think that in order to break the paradigm, we need more inclusive initiatives, including from people with disabilities themselves. We need to create a disability protest movement in Russia.
Anton Ryanov: Unlike our foreign colleagues, we are really only at the very beginning of this journey. On the other hand, I would also like to look at these changes through the lens of the present. The current coronavirus situation, when everyone became isolated, showed the majority—or rather the minority, people from privileged normotypic communities—how the majority of people live, who aren't part of artistic production due to their physical characteristics or distance from centres of industry. Distance, including social distance. Suddenly, the normotypic privileged residents of large population centres found themselves in the same kind of remote situation. On the one hand, they lived through our experience; on the other hand, our experience helped us start making projects quickly and efficiently. For example, alongside my colleague Katya Maguskina, we held a round table on inclusion in contemporary art where we gathered representatives of institutions that worked with inclusion. In an ordinary, pre-COVID world, it would be impossible to gather everyone and bring them to Nizhny Novgorod or to have more than 200 people simultaneously participate in a discussion like that.
Vera and I created our project Androgyne and Centaur, a video art piece and several other things during quarantine. We all now interact more, from different countries and cities, through Zoom calls—this speaks to how the situation is changing through media tools. The problems connected with artists with disabilities and their social activism before can be eliminated, or at least reconceptualized, in this mediated situation. We can do more now than ever before.
1 According to the sociocultural model, both a person's ability and inability to do something are determined by cultural mechanisms: from the physical environment created by a person (the absence or presence of ramps, tactile tiles, etc.) to the school assessment system and language metaphors that belittle the importance of Others’ (see: Yarskaya-Smirnova and Bolshakov 2019).
2. Shape Open is an annual exhibit about disability in which artists both with and without disabilities can participate. It first took place in
3.In this case, infrastructure means architectural accessibility of museum buildings as well as the accessibility of materials and information (such as translations of texts into sign language)
- Yarskaya-Smirnova, Е.; Bolshakov, N. (2019) “Models of Understanding Disability.” In: Sarycheva, M. (ed.) Experiencing the Museum: Blind and Non-Seeing Visitors. The Garage Museum of Contemporary Art’s experience. [Muzei oshchushchenii: glukhie i slaboslyshashchie posetiteli. Opyt muzeya sovremennogo iskusstva ‘Garazh’
- Siebers, A. (2010) Disability Aesthetics (Corporealities: Discourses of Disability). Ann Arbor, University of Michigan Press.
- Shape arts (2012, April 24) Shape Exhibit page, https://www.shapearts.org.uk/pages/news/category/shape-open (14.11.2020).