d/Deaf and Disability arts in the Americas
Welcome to El Alto.
The second issue of the British Council’s review of arts and culture in the Americas is dedicated to the d/Deaf and disability arts movement and ‘crip’ culture. Anchored in the words of UK artist Yinka Shonibare’s bold declaration that disability arts is the last Avant-Garde arts movement, the publication brings views from d/Deaf and disabled artists, makers, and cultural leaders, all agitating towards a more just and equitable future – dismantling and building new worlds that make room for care, difference and disability culture.
This edition was co-edited with Tangled Art + Disability (Canada) and 17, Instituto de Estudios Críticos (Mexico). We would like to thank the collaboration of Bodies in Translation (BIT).
Series Editor: Pablo Rosselló
Issue Editors: Saada El-Akhrass, Sean Lee, Beatriz Miranda
Designer: Joseph Pochodzaj
Translators: Quentin Pope (Spanish/English), Patricia Oliver (English/Spanish)
With thanks to: Alejandra Szczepaniak, Alejandro Cervantes, Alex Bulmer, Andrés Milán, Auramarina Lazarde, Benjamín Mayer-Foulkes, Carla Rice, Carrie Hage, Colectivo No es Igual, Cristina Becker, Cyn Rozeboom, Daniela Fajardo, Diana Solano, Emma Campbell, Francis Tomkins, Heidi Persaud, Jo Verrent, Juliana Ferreira, Kayla Besse, Kaylyn Hamlyn, Lindsay Fisher, Lorena Martinez, Lucy Ralph, María García Holley, Pam Briz, Rodrigo Fernández de Gortari, Ruth Hogan, Salomé Esper, Sarah Frankland, Silvia Godinez, Simon M. Benedict, Sissi Hamman, Steven Brett, Susy Villafañe, Tracy Tidgwell, Valeria Zamparolo, Veronica Bergna, Victoria Cho, Wynsor Taylor, Yinka Shonibare CBE
This glossary includes words and ideas that you may encounter in this publication. Definitions are provided with some consideration of the different cultural contexts in which the words are used.
Ableism: Ableism is the intentional or unintentional prejudice against disabled people. It is translated in Spanish as Capacitismo. Its use has been introduced in Latin American countries in the last five years and refers to discrimination against people with disabilities by a society that values “normative capacity” over disability.
Art-activism: Art-activism is the use of art as a channel for activism. It combines the words art and activism. The term artivismo is also used in Spanish speaking countries.
Audism: Audism refers to discrimination against d/Deaf or hard of hearing people.
BIPOC: BIPOC is a short-form way of saying, “Black, Indigenous, and People of Colour.” These terms are mostly used in Canada and the USA (See “Disability Justice”).
Corporality: Corporality refers to the unique and personal experience of our bodies. It includes the mind, internal realities and emotional experiences.
Crip: Crip is a reclaimed word used by some disabled people to self-identify. Disability scholar Kelly Fritsch says, when we crip, we “open up with desire for the ways that disability disrupts.”
Deaf: With a capital ‘D,’ Deaf refers to Deaf identity and culture. With a lower-case “d” deaf refers to the experience of not hearing or being hard-of-hearing. In Spanish there is no such differentiation. It is common though to use the terms deaf person – persona sorda, and deaf culture – cultura sorda.
Decolonization: Decolonization means working towards restoring the freedom and self-determination of Indigenous peoples. It means respecting Indigenous people and their lived experiences and moving away from ways of thinking that give white settlers unjust rights and privilege over Indigenous peoples and People of Colour.
Disabled: People who identify as ‘disabled’ subscribe to the Social Model of Disability, the theory that society has been built without disabled people in the equation and understands that society creates barriers to access hence, people are disabled by society. The flip side to the Social Model is the Medical Model: this model understands disability as a ‘problem’ that belongs to the disabled individual, thus wanting to distance the individual from the label disability.
Disability aesthetics: Aesthetics refer to our sense of what is beautiful, interesting, and fulfilling. Aesthetics also refer to how art makes us feel and how our sense of beauty influences what we create. Disability aesthetics invites us to think about disability as a desirable and celebrated way of being in the world. Disability aesthetics is not a commonly used term in Spanish speaking countries in Latin America but is becoming more common in academic contexts through the term estética de la discapacidad.
Disability justice: Disability justice is a form of activism led by and for disabled, queer and trans BIPOC. This form of activism focuses on experiences of disability and ableism from an intersectional perspective, which takes race, gender, sexuality, and class into account.
Disca: Disca comes from the term discapacidad. It is used by young activists to self-identify as disabled. It is also used to describe a disability-led movement, the disca movement, and to refer to disca protest, disca art, and disca pride.
Diversidad funcional: This term was introduced by the Independent Living movement in Spain to describe disabled people. It was later introduced in Latin American countries by Spanish activists and academics but its use is cause for debate. A majority disabled people in Latin America prefer to identify with discapacidad – disability – which follows the United Nations Convention on the Rights of Persons with Disabilities.
Indigenous: In Canada, when we refer to Indigenous people, this includes First Nations, Inuit, and Métis People. In Latin America, it refers to the First Peoples of the land.
Interdependence: Two or more people or things that take care of one another in respectful and reciprocal ways.
Intersectionality: This concept was created by Black feminist scholar Kimberlé Crenshaw to describe overlapping systems of oppression. It means that not everyone experiences disability or marginalization the same way. For example, some of us experience disability in a way that is impacted by our experience of race, gender, and sexuality.
Loco/loca: These are the Spanish terms for mad used by some activists to reclaim the right to experience mental distress. The term “Orgullo loco” speaks to the pride of being mad.
Mad: Mad is a reclaimed word of self-identification used by some people who experience mental distress and/or use the mental health system.
Neurodiverse: Neurodiverse refers to the idea that people experience things in many different ways. Our bodies, our minds, and our nervous systems are varied and include all kinds of different responses to our environments. A person who is neurodiverse may experience different sensations and responses to the world. Autism and autistic ways of thinking are common examples of neurodiversity, though there are many other ways to be neurodiverse.
Relaxed Performance: A Relaxed Performance is a type of theatre performance that is modified to be accessible for people with sensitivity to lights, sounds, and unexpected events. RP are also accessible to people who wish to move around or make sound during a performance, or who wish to leave and come back. RP sometimes includes a chill out space, visual story, and introductions to the cast at the beginning and end of the performance.
Sanism: Sanism refers to discrimination against people with lived experience in mental healthcare systems or institutions. The term cuerdismo is also used in Spanish.
Teoría crip: This translation of the term crip theory is generally used by scholars and young activists in several Latin American countries. Similar terms, teoría tullida and teoría lisiada – cripple or lame theory, and teoría patoja – duck theory, have also become more common.
Tullido/lisiado: Tullido and lisiado are reclaimed words of self-identification used by some disabled people, especially young activists. Because of the historical use of these words as pejoratives for physically disabled people, they are generally unacceptable to broader disabled communities.
This glossary was adapted from the Cripping the Arts Symposium Access Guide (2019), developed by Bodies in Translation: Activist Art, Technology and Access to Life with new additions by 17, Instituto De Estudios Criticos.
Edu O. – Brazil
In an open letter, Edu O. defines bipedalism, outlines the collective experience of the ageing body, and calls for a disability-led paradigm shift.
You may not be aware of it, but you are a biped. Yes, if you do not have any disabilities, fall within the standard-body category and you view disability as a pathology; if you feel pity and compassion for us “poor things”; if you consider people with disabilities to be unproductive, less capable and less beautiful; if you think of disability as a unique experience or one that affects everyone the same way; if you overlook the wide diversity and particular aspects of disabilities, then yes, you are a biped. If your idea of inclusion fences us off in areas that exclude us more, yes, you are a biped. If you think that a body without disabilities is the only normal one possible, yes, you are undoubtedly a biped.
From my perspective, bipedalism is a social, economic, cultural, and political structure that determines normality and abnormality, capability and incapability. For me, bipedalism is not just the way you walk but a system of oppression based on the traditional concept of what it means to be “normal” or “disabled.” In Robert McRuer’s Crip Theory, the construction of “normal” connects to the economic and political interests that establish a compulsory able-bodiedness and normalize dominant ideologies aimed at boosting productivity. In dance, these same structures enforce a standard of able-bodiedness and exclude those it considers disabled, unfit, and incapable. This is what I call compulsory bipedalism.
Therefore, you are a biped if your dance ignores the possibilities of different bodies; if you are unaware of the limitations of your own bipedalism which over time repeats the reductive clichés of verticality and virtuosity in dance and use of the body; if your aesthetic, artistic, and therefore political choices maintain and reproduce invisibility strategies and non-recognition of works by artists with disabilities; if, as a curator, you fail to recognize that the white-biped-cisgender body is predominant in festival dance programs; if you consider our presence as something exotic, as a theme for study or discussion; if your classes and methodologies do not even contemplate the involvement of the disabled, making us the ones who need to adapt; if your production does not care about accessibility, showing indifference to your audience; if, as a journalist, you carry on writing sensationalist articles that treat us like in the freak shows of the past. If you approach dance or art in any of these ways, then you are a biped.
How am I supposed to feel about your TV programs, plays, musicals, movies, and love stories when you assume that I’ll never be able to live? Do you understand? Biped thinking is everywhere, it dominates all spaces, makes us invisible, and rejects our very existence. How many disabled people do you live with or have you worked with?
When you think about dance, what body can dance your dance? Who can perform your art? Who can watch it? If the whole body is the person — because bodies cannot be detached from the person — who do you include? Who do you leave out? What do you think about disability? What words do you associate with it? When you think about dance and disabilities or art and disabilities, what images come to mind? What are your reference points? And if you do not have references or cannot apply common sense, how do you judge our competence and production? You know so little about so many things!
There is more to it than what meets the eye… and yet it’s still an obstacle course for the wheels on my chair. You always dig holes so I can’t get too close to you. Perhaps you think my disability is contagious. Or, as Boaventura de Sousa Santos says, “there is less to it than what meets the eye.” Establishing who belongs and who doesn’t belong on the side of a line invented to create hierarchies between some who are authorized to speak, and others condemned to a lifetime of silence and submission is quite simple. You, biped, lock us away in a little backroom to hide what we reveal about you. You are afraid of us.
I’m going to tell you a story I read in the book Holocausto brasileiro – Genocídio: 60 mil mortos no maior hospício do Brasil (Brazilian Holocaust – Genocide: 60,000 Deaths in Brazil’s Largest Psychiatric Hospital), written by Daniela Arbex. Antônio was admitted to a psychiatric hospital in Barbacena and spent 21 years in total silence; the hospital staff considered him to be non-verbal. One day, Antonio uttered a sound when he heard music playing. Everyone was shocked. When asked why he had not told them he could speak, he simply said, “because no one ever asked.”
Well, you never asked me either. But I’m not going to hold my tongue, and I’ll say it over and over again: “YOU BIPEDS WEAR ME OUT!”
Without a doubt we cannot deconstruct and destroy such deeply ingrained mindsets. Biped thinking is an integral part of our society. It molds and limits our comprehension of the body and the world; discounts any experience not considered normal. This normality does not exist, biped. Believe me! Rethink, revise, change these concepts. You cannot continue to enjoy so many privileges. Do you know why not?
I feel a wind approaching from far away, perhaps a wind of change. We, the disabled, are finding our place and debunking some stereotypes. We habitually change ourselves when we come into contact with the other. We feel apprehensive when confronted with the unknown or, in this case, the not-so-unknown non-disabled body, but because it is so well-known, we take it for granted. Encounters and contacts cause transformations.
I’d now like to address my disabled friends — those “intruding bodies,” as Estela Lapponi says — who come without asking permission, encroach on places where historically we have not been invited, and disrupt everything from architecture to attitudes, communication and technology. Our bodies incite, bother, and perturb. We challenge stereotypes to affirm who we are and to reject standards imposed upon us. Never forget that when we enter spaces, we transform them. A lived experience cannot be negated. No one speaks for anyone else, no one speaks for us, but we can comprehend the other’s universe and try to co-create with them.
Biped, I am not writing to you to widen the chasms into which you have thrown us so many times since the times of Ancient Greece. My intention is to build bridges to make you aware of the violence you cause every day, when despite your good intentions you belittle us with your compassion and pity. I get it: some of you may not even be aware of this.
But the time could be ripe for us to change our consumer habits and dismantle the stereotypes we have created and perpetuated and that ultimately determine for us what is beautiful, productive, and capable. When we are free from this isolation imposed upon us by COVID-19 — an isolation that perhaps is a new experience for you bipeds, but which for those of us with disabilities is a condition routinely imposed on us by the lack of accessibility and opportunities — what will matter? Which lives matter? Some more, others less?
You even appear to support worthy causes in a visible way, but does your activism take into account disabled lives? If not, biped, I’m sorry to disappoint you, but I do not believe in your fight. Do you know why?
Because a disabled body awaits us all. This is a message I repeat endlessly. The disabled experience is our unavoidable future, whether we are women, men, transgender, cisgender, gay, lesbian, asexual, Black, or Indigenous. The disabled experience is our inevitable future either because of some quirk of fate or simply as a result of living. Ageing comes from staying alive, and ageing goes hand and hand with disability. Understanding the disabled body as the future implies thinking about how disabled people and disability studies have contributed to various branches of science, from medical studies to robotics, technology, communication, and the arts. Understanding the disabled body means thinking differently and dialogically and deconstructing the idea of the subalternity of disability. If everybody will develop a disability at some point, would it not be smarter to build a world grounded in this fact?
For the future that is already present, my wish is that we — as people with disabilities — occupy spaces, because we are legion. We should work on breaking down the barriers imposed on us by social norms and expose this much-overlooked reality of isolation, exclusion, and misunderstanding that is essentially unknown to the majority of non-disabled people. This wind of change is what gives me the strength to exist in this past-present-future-HERE.
See you soon,
Edu O. is a dance artist, performer, wheelchair user, and professor at the School of Dance at the Universidade Federal da Bahia/Brazil. He likes to write and create content on his Instagram @eduimpro, where he documents the exclusions and violence caused by “compulsory bipedalism”, a term that he coined, and that he is currently expanding on in his Doutorado Multiinstitucional e Muldisciplinar em Difusão do Conhecimento [Doctorate in Multi-institutional and Multi-disciplinary Diffusion of Knowledge] (PPGDC).
Unlimited – UK
Looking back at the partnership between Unlimited and the British Council – a joint venture that brought disability arts to a global stage.
At the heart of the British Council’s work in disability arts is our partnership with Unlimited. Beginning in 2008 in the lead-up to the London 2012 Olympic Games and Cultural Olympiad’s, we made a commitment as partners to do for disabled artists what the Paralympics has done for disabled athletes.
The partnership between Unlimited and the British Council emerged within the context of a long history of arts-led activism in the United Kingdom (UK). The Disability Arts Movement in the late 1970s brought together disability activists, artists and creatives of all kinds who campaigned for the civil rights of disabled people and fought against their marginalisation in the arts and culture. The influence of this movement led to the passing of the Disability Discrimination Act in the UK in 1995, which banned discrimination of disabled people in connection with employment, the provision of goods, facilities and services. It was replaced in 2010 with the Equality Act.
The inspiration provided by these artists manifests itself in the opportunities afforded to disability artists in the UK today. Unlimited’s contribution to the Paralympics’ Cultural Olympiad resulted in 29 new commissions by disabled artists from across the UK and five international collaborations with artists from Brazil, China, Croatia, Germany, Japan, and South Africa.
Delivered by disability-led Shape Arts and arts-production hub Artsadmin, Unlimited has subsequently developed into the world’s largest commissioning programme for disability arts and remains a major partner for our work.
Jo Verrent, Senior Producer for Unlimited and member of the defining Disability Arts Movement, reflected on Unlimited and its impact on disability arts:
“All sounds great, doesn’t it? And in the most part it is. However, what’s important is to look at why initiatives such as Unlimited exist, not just what they do.”
Unlimited exists because disabled artists experience multiple and systemic barriers to developing arts skills, gaining funding, negotiating the arts sector, and platforming their work. This is not due to a lack of talent, vision, skill or resilience. This is due to entrenched ableism within the cultural sector – and all sectors of society. It’s due to historic systems excluding rather than reimagining. Access and inclusion are not seen as a priority despite the fact that disabled people make up 15% – 25% of our global population, according to some definitions of disability. Together we aim to change perceptions of disabled people both in the UK and internationally with ground-breaking and high-quality art. Indeed, “Unlimited funds exceptional work.” It supports disability arts and enables it “to cut through the barriers – to become ‘must see’ rather than ‘should see’ and therefore change the perception of disabled artists from one of pity or discomfort to a more rounded one – we are just part of humanity. People often assume there is one type of disabled artist producing one type of work, but artists are artists, and the variety is infinite – of both artform and approach.”
Many of Unlimited commissions have gone on to tour internationally with the British Council’s support, bringing boundary-defying work to new contexts, challenging audiences world-wide, and raising the profile of disabled artists. Cultural leaders across the globe are inspired by Unlimited as a funding model that has the capacity to lead social impact.
Verrent reflects on the reach of their collaborations: “Unlimited [projects] and artists have worked [across] the Americas frequently such as [with] VIVA Carnival developed with Brazil,, Touretteshero, which toured through the USA and Canada, Raquel Meseaguer adapting work with Mexico, and Richard Butchins showing work in Argentina .”
There are many facets to our partnership. British Council Arts specialists sit on Unlimited’s commissioning panels. We provide training and advice for disabled artists regarding international work. We support a placement programme for disabled arts professionals from outside the UK to gain valuable experience working with Unlimited’s team at Shape Arts and Artsadmin. To date we have had placements from Australia, Cambodia, South Africa, Taiwan, and Uganda. In 2016, with Arts Council England Ambition for Excellence funding, we launched a second round of Unlimited International commissions, resulting in collaborations with Brazil, Palestine, Japan, Singapore, and India.
Over the last 10 years we have established an international biennial showcase, the Unlimited Festival, delivered by Southbank Centre, which reflects the growing international demand for the UK’s disability arts. At the first Unlimited Festival in 2012, we hosted 50 international delegates. By 2018, the number of international delegates had grown to 120 from 40 countries. We introduce the delegates to UK disability arts by hosting presentations and talks, networking events and providing opportunities to attend performances by leading UK artists.
Working closely with Unlimited and Unlimited commissioned artists, our disability arts programme spans 46 countries and includes tours and exhibitions, disability conferences, and symposia, disability awareness and access training, skills development for disabled artists and practitioners and consultancy to cultural organisations and governments. We have also developed tools that can be used by anyone such as our short, animated video that explains the social model of disability, and our Disability Arts International website promoting increased access to the arts for disabled artists and audiences around the globe. In 2021, we provided micro-awards to artists to collaborate remotely. A few examples of these collaborations from the Americas include Hannah Aria (England: South East) and Estela Lapponi (Brazil); Gina Biggs/SheWolf (Wales), Javier Hernando Peralta Gonzalez (Colombia), and Anthar Kharana (Colombia); Poet Ekiwah Adler-Belendez (Mexico) and multimedia artist Juan delGado (England: London) and Chris Tally Evans (Wales) to work with Fernanda Amaral (Brazil).
Our partnership places UK disabled artists and cultural leaders firmly at the centre of an international disability arts movement which is a catalyst for social change. The Unlimited/British Council partnership leaves a legacy that is far-reaching and transformational. From the establishment of the first integrated theatre and dance companies in Bangladesh and Armenia respectively, to the first Minister for Disability in Korea, the work we initiate and support has a profound impact in arts and culture. In the Americas, this legacy is taking shape in ways that amplify the work done by arts and activist groups in the cultural sector. Our programmes create spaces for cultural exchange and raising awareness, like with Cripping the Arts in Toronto (2016, 2019), Trazando Possibilidades in Guadalajara (2019) and the inclusive programme for the FIBA in Buenos Aires (2020); It supports and showcases UK and local talents, like the collaboration between Natalia Mallo and Marc Brew in Brazil, and influences and builds capacity for accessibility and inclusion through the Relaxed Performance project in Canada. All these initiatives, realized on the ground with key partners, further create an enabling environment for arts and culture for all.
Elements of this text are from an article by curator and writer Linda Rocco, originally published on the Unlimited website and as part of her associate role with Unlimited and The Art House. She interviews Tony Heaton OBE, David Hevey and Jo Verrent, members of the Disability Arts Movement, for their thoughts on the legacy of disabled people’s art and activism in the UK.
Following the first round of Unlimited during the 2012 London Cultural Olympiad, the British Council team in Brazil developed Unlimited: Arte sem Limites together with 8 UK and 20 Brazilian cultural organisations. This programme was part of Transform, a programme that aimed to connect British and Brazilian cultural organisations and artists around programmes that focused on social change.
Unlimited in Brazil was an extensive programme that aimed to increase access to culture and encourage artists with disabilities to produce work. It was a unique umbrella programme focused on disability arts with a special focus on showcasing high-quality work produced by disabled artists. The programme had four major strands of work, from access auditing and policymaking, capacity-building and training for showcasing to collaborations and co-productions. A total of 16 projects took place between 2012-2016 in Brazil and in the UK.
In its final year, Unlimited held its biggest projects and events culminating with activities within the Paralympic celebrations Rio 2016.
Amongst others, Natalia Mallo, producer and artist, was supported to develop MayBe, a dance piece co-created by the Brazilian artist Gisele Calazans and the Scottish artist Marc Brew, which subsequently toured both in Brazil and the UK. Graeae Theatre presented The Garden – a large-scale open-air performance, as part of the British Council’s Cultural Olympiad programme during the Paralympic Games in Rio de Janeiro. This was the largest project ever produced as part of Unlimited in Brazil and it was a recreation of the original piece, with Brazilian artists in the cast. Finally, in partnership with Biblioteca Parque, Rio 2016 and Rio’s Secretary of Culture, the Fórum Unlimited de acessibilidade na cultura was a 3-day forum on accessibility where Shape Arts delivered a training course for 20 people who cascaded their learnings in their institutions and networks.
With activities happening in Rio de Janeiro, São Paulo and Recife, Edinburgh and London, Unlimited: Arte sem Limites engaged with more than 500 d/Deaf and disabled artists and allies, and a total of 89,000 audience attended Unlimited events across the four years of the programme. In the Americas region, this programme has led the way in developing a model of cultural relations focused on disability and based on nurtured international exchanges and collaborations.
Elian Chali – Argentina
Cripping urban characteristics across the world.
Before art, I am interested in the world. The city exerts a strange magnetism on me, not only on account of its political potency, but also as a social theatre. My exposed body reveals to me how we humans deal with the different things life throws at us.
Art provides me with the possibility of establishing various levels of connection in urban contexts. I try to set my practice apart from everyday procedures, stereotyped interpretations and identifications. I am not specifically concerned about whether my work operates within certain canons, and prefer hybrid, ambivalent terrains.
My artistic intuition is pictorial. It characterizes my approach to performance, writing, painting, and photography as different disciplines that merge in my practice. Since I materialize my ideas on the basis of pre-existing work, I consider architecture as a collaborator of my work, rather than as its basis.
Although cities are depicted today as large institutional artifacts, each crack through which my oeuvre might find its place is an opportunity to maintain the vitality and ethos of my work. The focus is found on the sensible instead of the commonplace that occurs on the margins of the art system.
I think that an artistic puncture can reveal the dreary and gray qualities of a “normative city,” archetypical to the landscape of late stage capitalism. I interrogate the forms of social life proposed by these contemporary urban machines.
Scale, location, sociocultural context, urban characteristics, object of intervention, epoch, motivation, and working conditions are all fundamental aspects of ethical resonance of my praxis.
My hope is that my art might sustain questions, rather than seek responses. I believe in a political mode of producing art; a politicized art that stands against political art as an alienated and disengaged category. When I try to decipher my work I realize that I do not control what I do, I am only the assistant of a force that I do not fully understand but that grants me a freedom that accompanies me, looks after me, instructs me. A freedom that can be socialized. In exchange, it demands my cooperation and an emotional body in the imagination of another possible world.
Elian Chali is a self-taught artist that lives in Córdoba, Argentina. As a disability rights activist, Elian is part of Torceduras & Bifurcaciones, a forum on the politics of corporality. He has exhibited work internationally in more than 30 different countries. He founded and co-directed Kosovo Gallery (2012-2015), and was the curator-in-chief of MAC contemporary art fair (2018) in Buenos Aires. In 2016, he published his first book “Habitat”, and his work can be found in various publications and editorial projects about art, design and architecture.
Vanessa Dion Fletcher – Canada
Vanessa Dion Fletcher discusses her solo-exhibition Own Your Cervix and the performance Finding Language, highlighting an important juncture of disability and indigeneity in her practice
Could you tell us more about your practice and how it’s developed since your solo exhibition, Own Your Cervix, at Tangled Art Gallery in 2017?
My practice follows a lot of different mediums, themes and ideas – I sometimes have a hard time summarizing it because I cast a pretty wide net. With that caveat, I can say that I work a lot in performance, video and textiles. In the exhibition, Own Your Cervix, I was using porcupine quills but I hadn’t yet learned the embroidery techniques. So I was using them as whole objects on sculptures. Since then, I’ve learned the embroidery techniques and my practice has somewhat focused on that over the past few years.
At the 2019 Cripping the Arts Symposium in Toronto you performed Finding Language. Could you speak to aspects of performance in your work?
Finding Language comes from my experience of language and disability. When I was small, pretty much as soon as I started school, the education system diagnosed or categorized me as disabled. For a long time, I thought about my experiences of disability as being mostly situated at school, but that’s evolving now.
I started thinking about English; English is the only language I speak. The Lenapé language and the community that my family comes from have very few speakers. There’s actually no first speakers, so there’s really just a handful of people who still speak it fluently. Speaking in English, writing in English, and trying to communicate in a world that values and prioritizes the written language, was the focus of the work.
Originally, this piece was conceptualized as a kind of workshop activity and I was thinking about how it’s really fun to look at the way that written language appears in our everyday life. I wanted to go and look at different examples and investigate them as this performance/ scavenger hunt by traveling around the room and discovering different things. Whenever I found a word, I would look it up in my Lenapé dictionary. The dictionary I use was written by John O’Meara. He writes, “This writing system is based on the linguistic transcription system used in Goddard (1979). It substitutes English-based characters or sequences of characters for several symbols commonly used in phonetic transcription systems”. What I understand from this is that the system is utilitarian or made up — created because of the focus on written text over oral communication. When you open the dictionary, it’s full of words, for example [and I am reading from the dictionary] K-U, K-W-U-L-U-P. At the time I was such a beginner, I had little to no idea how to pronounce the words. The dictionary has a pronunciation key, but it’s complicated and you have to read it. How silly! Reading how to pronounce something. In the performance I was trying to find the word in the dictionary and then sounding it out and trying a couple different ways that it might be pronounced. It was an audible struggle but aspirational and was drawing attention to the materiality of language. The way that words physically appear in our space; and then through this pronunciation trying to draw attention to the way that those sounds are formed in our mouth and move out from our breath to the world.
Eliza Chandler (Assistant Professor, Disability Studies at Ryerson University) once mentioned how that piece very clearly demonstrated some of the ways ableism and colonization have connections. It’s really interesting because there’s an oral tradition in Lenapé — it’s ephemeral. t’s not until an outsider comes and creates this dictionary that for you there’s a disabling factor. Had you had access to the oral traditions perhaps you wouldn’t have had that disabling experience in learning it. Your piece is really identifying an important intersection of disability and colonization, which is a theme in a lot of your works. On that note, could you expand a bit more about your exhibition Own Your Cervix.
Own Your Cervix is the result of a long period of interest and investigation so I could talk about it in a few different ways. One is from the personal experience of feeling shame and discomfort around my menstruating body. I am also very aware of gendered violence in general, particularly in Indigenous communities or perpetrated against Indigenous communities. I was thinking about reproductive justice and bodily autonomy in different contexts. I think about a body —my body — that can produce children in this colonial world that I live in; the different effects that it has personally within my own family and then with my community. I wanted to speak from my own experience, but to not limit other people’s engagement or understanding because there’s a lot of connections to be made across communities through these experiences.
The exhibition was quite multifaceted; there was a lot of physical, two dimensional, and three dimensional work in this space. There was also a performance aspect; I extended invitations to the Tangled audience to do a self exam that could or could not include looking at one’s own cervix. Within the gallery space, as part of the installation, I had all of the materials necessary to do a cervical self exam: a speculum, hand sanitizer, lubricant, a mirror and a flashlight. It’s a pretty simple setup, but a few of the tools, specifically the speculum can be difficult to obtain individually. I made a bench for people to sit on while participating in the self exam. The bench is 18 inches in height with removable legs, upholstered in leather, and one side has a plastic covering with a beaded patch that looks like blood. It was important to me that I tried to frame this as a kind of process of self-reflection that was open to people of all genders with any kind of anatomy and not assume how anyone with or without a cervix might want to participate. I really wanted to make sure to use language that was open to all people. There are always improvements or adjustments that can be made. Tangled gave me feedback from visitors to the gallery using wheelchairs who found the setup of the room a little difficult to get in and around.
Outside the self-exam area, I had a little Victorian-style settee, which is a little two-seater couch, and a couple of chairs. I wanted to use furniture to think about the way that menstrual blood has the potential to talk about a relationship to the body and people’s fears or experiences of staining furniture or sitting on furniture that has been stained. The furniture became sculptures, but I was also thinking about it from a very performative place; thinking about the influence of European and Victorian themes of morality on our current understanding of menstruation, the performance or politics of it, and how these influenced furniture too.
I read that the Victorian era was sometimes called the era of “colonial comfort” because of how technology enabled advances for curved wood and springs to make furniture and homes more comfortable. As I was reading, I realized furniture was comfortable for some people while being incredibly violent and uncomfortable for others. Also, the building of railroads (through immigrant labour) across North America, a colonial historical moment, was also important because that allowed the furniture to be distributed quickly across the continent. All these colonial moments were tied to the Victorian-era furniture I used. I had them upholstered in white fabric and a floral pattern and then poured my menstrual blood decoratively onto the pattern. And this is where I use the porcupine quills to look like they’re growing out of the furniture with the fabric around the menstrual blood.
The way you amplify the pieces with your menstrual blood was this really interesting way of engaging with a disability arts audience. On the one hand, you created these invitational seating spaces because folks who have that access need could sit on one of the chairs, but you also employed porcupine quills in the larger settee. For the Tangled gallery staff, it was a moment of contemplation on how folks will interact with that couch in a way that it’s intended to but also create access. In the end, we made the decision to inform every guest who came in that the porcupine quills were there, but it was up to them to decide how much they wanted to interact with the settee or if they wanted any help navigating the piece. In a disability arts gallery setting that’s really provocative because in this case, access is not necessarily comfort and safety all the time; instead, access is about creating entry points into the works.
I think it’s really interesting because I showed the Own Your Cervix work at my graduate thesis exhibition at the School of the Art Institute of Chicago. To keep the audience safe, they asked that I put the settee on a plinth so that people knew that it was art and not to touch it. I think I like that approach of having somebody there to tell each person “there are quills there and if you want to touch some, you can”, or “here’s how you stay safe”. I provide access, but in this case, it’s more true to the work. I wanted it to be on the floor, so it’d be part of the room and not separated by a pedestal.
The context of a disability arts space versus one that doesn’t have access in its mandate is really interesting, as it seems that this intersection helps to create and illuminate the original intentions of the piece. Whereas the idea of putting your work on a plinth is almost antithetical to your original piece, because it’s about enacting some of the aesthetics of a colonial art world onto your art piece in itself.
Yes, to go back to the self exam, I was trying to create a situation where people have their own agency to decide how they’re going to participate, or touch, or be in the space.
Vanessa Dion Fletcher is a Lenape and Potawatomi neurodiverse Artist. Her family is from Eelūnaapèewii Lahkèewiitt (displaced from Lenapehoking) and European settlers. She employs porcupine quills, Wampum belts, and menstrual blood to reveal the complexities of what defines a body physically and culturally. Reflecting on an Indigenous and gendered body with a neurodiverse mind, she creates art using mixed media, primarily working in performance, textiles, and video.
She graduated from The School of the Art Institute of Chicago (2016) with an MFA in performance and York University (2009) with a Bachelor of Fine Arts. She has exhibited across Canada, and the US at Art Mur Montreal, Eastern Edge Gallery Newfoundland, The Queer Arts Festival Vancouver, Satellite Art show Miami. Her work is in the Indigenous Art Centre, Joan Flasch Artist Book collection, Vtape, Seneca College, and the Archives of American Art. Vanessa is a 2020-2021 Jackman Humanities Institute fellow at the University of Toronto.
Eliza Chandler & Elwood Jimmy – Canada
A push for a different relationship with time.
In December 2020, Elwood Jimmy and Eliza Chandler discussed the impact of the COVID-19 pandemic on their experience of arts and culture.
Eliza Chandler: I wonder if you could reflect on the dynamics we negotiate as Indigenous and disabled people working in the art world, and how it relates to this contemporary moment of the COVID-19 pandemic and increased public awareness of state-sanctioned violence against Indigenous, Black, and racialized people.
Elwood Jimmy: I think modernity interrupts our responsibility and our obligations to one another. I think about this a lot in relation to my own practice: how do we find ways to be different, to move differently, and to relate to one another differently, especially to bodies that have been historically marginalized and experienced the burden of colonial violence? This burden became crystal clear within the pandemic, with Black Lives Matter, and also within disability activism. Even thinking about what was happening here very locally in the province of Ontario. For example, the income disparity between people who were losing their jobs and getting the CERB [Canadian Emergency Relief Benefit] payments of $2,000 versus people on ODSP [Ontario Disability Support Program] who receive a monthly living stipend of much less than that. And people still just take it as a given that some bodies are more valuable than others. One of the key tenets of modernity is separability. In these conditions, how do we interact?
I ask this question in my practice everyday. There’s always this misalignment between Indigenous and colonial sensibilities, and in order for us to move towards some sort of alignment where different sensibilities can respectfully coexist, I think about our own individual pursuits and desires that make us complicit within this work of moving differently, moving together, and moving collectively and horizontally. What are the blockages? What are the barriers that are causing us to be constantly misaligned?
In many conversations, no matter what community, I always hear an emphasis on “movement”, but the movement is always about progress and moving forward. I think about these kinds of historical violence against bodies within the Indigenous community or disability community, and we haven’t really sat with that. We haven’t been able to actually look at the historical violence and historical harms that have been done to particular communities, including Black communities. We always want to gloss over or brush those aside so that we can move forward, but I think we need to actually develop stamina and the muscles to actually sit with this violence. I think sometimes people don’t think ‘sitting with’ is as powerful or as evident as moving forward. But I think ‘sitting with’ is actually, in these times, the more powerful, more generative, and more compassionate move rather than constantly trying to move forward.
Eliza Chandler: Speaking from my perspective, I absolutely agree. I think many disabled people have experienced the pandemic differently than most. Many of us – when we are able to – shelter in place, fearful of how ICU-genics might play out if we contract the virus and end up in an overloaded hospital for treatment. At the same time, we have witnessed crip perspectives seep into broader social consciousness as the impact of austerity measures on care homes’ abilities to care are exposed, working from home becomes not only possible but lauded for its efficiency, and artists broadcast performances live from their bedrooms. And, as you say, we can no longer deny that late capitalism requires many of us to suffer so that some of us can thrive. As capitalism crumbles while socialism once again tries to save the day – all the while trying to beat off capitalism’s phoenix rising – many are resisting a desire for the ‘return to normalcy’. In these ‘early days’, on July 4th, essayist and former poet laureate for the City of Toronto Dionne Brand wrote an editorial to the Toronto Star, in which she questions these desires, asking us if homelessness, gender-based violence, anti-Black and anti-Indigenous state violence (2020, July 4) are the normal to which we desire to return.
One of the things I have been struck by throughout the pandemic is, as my friend Loree Erickon has pointed out, the need for interdependency on a massive collective scale. Interdependent relations of care change the power dynamic embedded in traditional care relations by recognizing that care can be and often is reciprocal. We are all being asked to engage in interdependent relations of care: I have to wear a mask to protect you and you have to wear one to protect me. Strangers engage in dances on the street so they can pass each other from a safe distance. We ask taxi drivers about their families and our personal support workers ask us about ours. We are caring for each other as though our lives depend on it, which they do!
EJ: I use the word ‘sensibility’ a lot in the work that I do as a curator, a programmer and an artist. There are layers of knowing and layers of being, but I would frame that as a sensibility – like an Indigenous sensibility or non-Indigenous sensibility within a Canadian context. How do those two different sensibilities encounter one another in real world situations? In a workplace, in the contemporary art world that both you and I are part of, or in various artistic and educational and even political organizations that we’re all engaged with.
The word ‘acces(sen)sibility’ came from my involvement and my own lived experience of working within access, disability arts and disability justice, contemporary art, and Indigenous art, and these many layers that are embodied within my body and my own practice, my own life ways, my own ways of navigating the world. I think this word gestures to something larger than us all, related to accountability. Many layers of accountability, not just to each other, but then also to the nonhuman and the beyond human, and the unknown. The world that we live in is very structured and contained, and within this human-constructed framework that we’re all kind of conditioned to live in, some benefit more than others. It doesn’t work for all of us in different, very disparate and marginalized communities. I am thinking about the language of ‘acces(sen)sibility’ and ways of knowing and of being that can move and shift, allowing different bodies to live nourishing, meaningful, and non-marginalized lives.
EC: My understanding of the term ‘acces(sen)sibility’ is that it’s asking us to think about access relationally rather than, as you say, as a tick box, as something we should be congratulated for. And one of those relationalities is between knowing and being. The way the term ‘acces(sen)sibility’ refracts a particular way of being is a different orientation for so many of us. And I think if we are to obligate ourselves to this interdependent way of enacting accessibility as a relation, part of that is to really think about the relations between what we say and what we do. That’s what I’ve learned so clearly. It’s not just about doing access, it’s about thinking and making sure that, as much as we can, the way we think about access and the commitments that it holds us to are translated into the practice of access.
I’m interested in your notion of ‘unrestricted autonomy’. It’s difficult to be unrestrictedly autonomous during a pandemic, although capitalism does persist. I do wonder about how much of a break in culture this pandemic has affected.
EJ: Yeah, it’s hard to say. Being an Indigenous person here in Canada, you see these waves of energy to embody care and to sit with complex and historically violent relationships. I find the broader community will often relapse back into these kinds of harmful habits and ways of being after whatever it was that allured them to wanting to, say, be a part of a reconciliation process. The pandemic interrupted our own global – when I say ‘our own’ you say ‘everybody’ – unrestricted autonomy. It will be interesting to see how the world unfolds over the next year or two to see if there is a more embodied demonstration of care, and if that’s sustainable. Time will tell.
The disability justice community has been advocating for many years and many decades for shifting and changing definitions of work and production value. And then, all of a sudden, it’s been implemented because of the pandemic. Not as individual bodies, but as a collective body – a kind of a collective metabolism, so to speak. Are we able to sustain this shift? The pandemic kind of twisted our arm and maybe pushed us to be different. These are muscles and capacities that modernity has exiled for decades and centuries. Do we have the stamina to keep those muscles moving?
I think within both Indigenous and disability communities, there has been a push for a different relationship to time and temporality. I feel I could say with some confidence within both of our communities, time has been weaponized and instrumentalized against us in terms of the pacing, of how we move, and how we work within communities.
Eliza Chandler is an Assistant Professor in the School of Disability Studies at Ryerson University where she teaches and researches in the areas of disability arts, critical access studies, social movements. She leads a research program focused on disability arts and crip cultural practices. Chandler is also a practicing curator.
Elwood Jimmy is originally from Thunderchild First Nation, a Nehiyaw community in the midwestern region of what is now called Canada. His favourite time invested is as a novice gardener and aquarist. He has worked in the arts in various capacities in Canada and abroad for over two decades.
Fabiola Zérega – Venezuela
Fabiola Zérega shares her experience as a dancer, an advocate of disability rights, and the producer of Am Danza de Habilidades Mixtas.
I am a dancer and producer of the AM Danza de Habilidades Mixtas, a dance company created to show how different bodies have limitless forms of movement. The world of disability has become slightly more present in recent times. But the road ahead is long, especially in Venezuela, where I live and work as a disabled person with reduced physical mobility caused by a traffic collision 25 years ago.
Over the past 18 years I have devoted myself to raising awareness about the needs and rights of disabled persons through dance. I have been promoting the inclusion of disabled people in creative pursuits through workshops and by participating as a dancer, breaking down stereotypes. I believe that the dancing of differently abled people is all about respect for what is referred to in Spanish as “diversidad funcional”.
I started this initiative because as a dancer I have had the opportunity to explore various kinds of movement, using the wheelchair as an extension of my body. I play with it and move through space, seeking different forms of expression.
In our dance company, different physical attributes become fresh sources of creativity as dancers explore the choreographic potential of wheelchairs, crutches, and walking sticks to draw people’s attention to the many ways of moving and perceiving.
At AM Danza, training is available for anyone wishing to participate and understand the potential of bodies, regardless of their physical condition. We seek to challenge prejudices and ideas that pigeonhole dance as an activity solely for conventional bodies.
UBUNTU (2018) is one of the exemplary performances that reflects the principles above and the creativity and movement that comes with the complicity of our devices. UBUNTU is a performance in which 50 artists and non-artists with physical, hearing, and visual disabilities, with Down syndrome, and cerebral palsy dance with professional dancers. On stage, they demonstrate the meaning of the Zulu word “Ubuntu”: “I am because we are.”
Although I loved dancing before my accident, I had never fully devoted myself to it, and so it was ironic that afterward fate called me to dance – something I no longer thought possible. How wrong I was. Now I enjoy dancing on these wheels that continue to show me a world with so much to say.
Amanda Cachia – USA
In this excerpt, Amanda Cachia argues for curatorial practices that embody a “creative access” framework which centers considerations of access in the art-object, the exhibit, and the artist-curator relationship as a site of meaning-making and aesthetic possibility.
“Creative access” builds on the generally understood meaning of “access,” which is the ability to approach and use something. According to Elizabeth Elicessor, “access” typically encompasses qualities of ease such as “user-friendliness of a system, or financial affordability.” In a critical curatorial practice where curators are understood to provide “access” to an audience in terms of an exhibition’s content through objects, ideas and text, adding the word “creative” to curatorial “access” has a political agenda. The idea of “creative access” is manifold: on the one hand, the goal of “creative access” is to advance a more complex curatorial model for contemporary art exhibitions that can be made accessible to an array of complex embodiments. For example, American Sign Language, captioning, and written and audio translations of sound and image are embedded into the material, structural, and conceptual aspects of an exhibition. On the other hand, “creative access” also means an active curatorial engagement with artists who use “access” as a conceptual framework in their practice. A curator’s notion of access and an artists’ interpretation of access are conflated and juxtaposed in an exhibition, providing a dynamic dialogic exchange between the physical and the conceptual, or the praxis and the theory.
My stake in the work of “creative access” is from the perspective of a curator who identifies as physically disabled and who has been deploying “creative access” in all my exhibitions since 2011. Not only has my curatorial work engaged in “creative access,” but my exhibitions have also engaged in social justice themes focused on disability and the disabled body. I have curated these exhibitions with the ambition of transforming reductive associations of the disabled body at large, in tandem with introducing audiences to Tobin Siebers’ idea of “disability aesthetics,” by illustrating his concepts through the art objects on display and providing alternative definitions of aesthetics. My projects have also explored activist positions within specific disabled community groups, including people with dwarfism, people who are deaf and/or hearing impaired, and people who are blind and/or visually impaired. My commitment to these themes called for an equal but also robust commitment to “access” given that projects focused on disability must surely consider the audience member who identifies as disabled. Therefore, I found myself not only paying attention to the artist and their work as part of conventional curatorial labor, but I also had to focus new energy into considering “access” in creative and conceptual ways that could be enlivened both practically and conceptually.
“Creative access” is an important tool to deploy within a critical dis/ability curatorial practice because it elevates and complicates our rudimentary, although no less important, understanding of “access” in the museum. This is because “creative access” embodies both conceptual and physical possibilities where the very idea of “access” can be discovered in an artists’ work fruitfully curated into exhibitions, and incorporated into projects under the leadership and imagination of the curator. “Creative access” then calls for curators to weave into their practice a new aspect that demands a consideration of a greater diversity of bodies. This diversity of bodies is represented both in the complex embodiment of and consequently the objects created by artists with whom they work, and the audiences that visit the museum and consume artists’ and curators’ ideas. What I am suggesting is that “creative access” perhaps offers a more compelling intellectual engagement with typical notions of access. Through regular and consistent deployment, the curator, artist, and audience member will enhance their knowledge of standard conventions such as captioning, whilst also enjoying how artists engage with such conventions creatively. Perhaps this will motivate curators to take on the work of access in more meaningful, concentrated ways. This is not to water down the significance of providing conventional physical access or the professionals who execute such work, such as captionists and sign language interpreters. Rather, “creative access” can be both practical and creative at once.
“Access” is not as one-dimensional as people might think because it can incorporate other sensorial experiences into the work that include tactile elements, sound, captions, audio description, and more. In the execution of this work, I have found artists to be both responsive and receptive to my ideas as much as I have been inspired by theirs. Therefore, the spirit of “creative access” suggests that a fluid process takes place between curator and artist(s) so that each party reaches consensus on what “creative access” should mean in a particular time and place for a particular exhibition and audience. In part, this also means that “creative access” advocates for a politics within the ordinary curator-artist dialogical exchange, where each party might consider it a necessity to discuss how “creative access” will be seen, felt, and heard for the benefit of a complex embodied audience.
Each instance in this essay where “creative access” has been deployed has also attempted to indicate how the artist/curator exchange, on its critical import, has evolved. In other words, “creative access” is not monolithic nor uniform. Much like the general definition of access itself, “creative access” is always going to be variable and dependent on a number of conditions. If the artist and curator are prepared to engage imaginatively with the work of “creative access,” then conditions of narrow standardization will not only eventually be disrupted as they transform curatorial practice and the museum and gallery experience for the visitor, but vital new approaches to art-making and thinking will thrive.
Sections of this chapter were originally published in “The Politics of Creative Access: Dis/ability in Curatorial Practice” in the “Cripping the Arts” Special Issue of the Canadian Journal of Disability Studies (2018). The author thanks CJDS editor Jay Dolmage and Special Issue editor Eliza Chandler for kindly permitting this reproduction.
Cachia, Amanda. “‘Disabling’ the Museum: Curator as Infrastructural Activist,” Journal of Visual Art Practice, Vol. 12, No. 3, 2013.
Cachia, Amanda. “Cripping Cyberspace: A Contemporary Virtual Art Exhibition”, Canadian Journal of Disability Studies, 2013 http://cjds.uwaterloo.ca/index.php/cjds/issue/view/7/showToc, accessed November 11, 2016.
Candlin, Fiona. Art, Museums, and Touch. Manchester: University of Manchester Press, 2010.
de Groot, Raphaëlle. Interview with Amanda Cachia, February 16, 2015.
Ellcessor, Elizabeth. “Introduction.” Restricted Access: Media, Disability, and the Politics of Participation. New York and London: New York University Press, 2016.
Linzer, Danielle and Cindy Vanden Bosch. “Building Knowledge Networks to Increase
Accessibility in Cultural Institutions.” Project Access, Art Beyond Sight, 2013. New York: Art Beyond Sight.
Siebers, Tobin. Disability Aesthetics. Michigan: University of Michigan Press, 2010.
Amanda Cachia is an independent curator and critic from Sydney, Australia. She received her PhD in Art History, Theory & Criticism from the University of California San Diego in 2017. Her research focuses on modern and contemporary art; curatorial studies and activism; exhibition design and access; decolonizing the museum; and the politics of embodied disability language in visual culture.
Cachia currently teaches art history, visual culture, and curatorial studies at Otis College of Art and Design, California Institute of the Arts, California State University Long Beach, and California State University San Marcos. She serves as caa.reviews Field Editor for West Coast Exhibitions (2020-2023).
Critical Design Lab – USA
A podcast about disability, design justice, and the lifeworld
Contra* is a podcast about disability, design justice, and the lifeworld created by Aimi Hamraie and produced by the contributors to the Critical Design Lab, a multi-institution project. Each episode features disability activists and designers using an interview format. A full transcripts is provided with each episode.
Subscribe on iTunes, Stitcher, and Google Play or play from their website.
What is “queercrip fashion”? Aimi speaks to Sky Cubacub, a fashion designer known for their colourful lycra, mesh, and chain mail designs. Sky presents their Rebirth Garments and Radical Visibility projects. Follow this link to listen. An interview transcript in English is also available.
How do disability culture and design practices shape contemporary disability art? In this episode, Alice Sheppard talks about her project DESCENT, which includes choreography, spatial design and technology design. Follow this link to listen. An interview transcript in English is also available.
Bubulina – Colombia
Natalia Moreno Rodríguez describes “artivism” and shares the socioeconomic and ableist barriers that disabled artists encounter in Colombia.
Bubulina is my nom de guerre, a name I chose for myself because I was fascinated by the story of the original Bouboulina, a Greek woman who fought against the Ottoman Empire. She formed an army and stopped Greece from being colonised. I identify with her as a strong, determined woman. I was born with a physical disability and work as a specialist in communications, a performance artist and an activist supporting the rights of disabled people. I dedicate my life to raising awareness and increasing understanding about various types of oppression that I encounter such as patriarchy, ableism, and heteronormativity. I am currently living with my mother in a working-class neighbourhood of Bogotá, supported by a wide network of friends and allies.
Art-ivism is a form of expression and of Putting Up Resistance
I became an activist in 2007 after joining a human rights committee in the place where I lived. After finishing high school, I didn’t have the opportunity to study at a university or find a job because of my disability and social class. Most of Colombia’s higher education institutions are privately run. Enrolment at a public university involves competing by sitting state exams and getting high marks — and my academic results were not up to scratch. Nor could I apply for computing courses nor learn a trade because the community centre did not have “special needs teachers”. This was on account of my disability. These painful and frustrating situations made it dawn on me that something was wrong. So I began to take matters into my own hands, to question what I saw around me and to organize myself along with others experiencing the same segregation. Something else that helped me understand my marginalized status was my political activism for many years in Colombia’s Communist Party. The experience was a real education.
In 2010, I began working in the performance arts after making a project that combined research, activism, and documentary filmmaking with four friends on the subject of disability, sexuality and gender. We wanted a performance to conclude the documentary, which led to the monologue called Tentáculos (Tentacles). My inspiration was the Italian director Pippo Delbono, who came to Colombia to present his play War and worked with several disabled actors.
I wrote and dramatized Tentáculos as a monologue. I sought to shed light on the stereotyped narrative built up around disabled people who are treated as children, limiting their feminine and masculine development. The connection created between the story and the spectator makes possible the sharing of experiences and breaks away from a politically correct discourse. The monologue has toured various cities in Colombia and in 2018 was staged in Mexico and Nepal.
In 2012 I trained as a teacher of Contemporary Inclusive Dance and subsequently began to give dance workshops. I am the co-creator of the Compañía de Danza Luna Patch, a dance company that performed my first play called Campo de Espejos (Field of Mirrors) at Universidad del Cauca in Colombia.
There is no future unless we become unconventional
My work in the arts world stems from my questioning of platforms that are completely normative or segregationist. Plays rarely use disabled actors. Moreover, disability arts is positioned as therapy or carried out in a segregationist way which steers me toward a critical perspective on art. Disabled artists produce powerful works, strongly critical of society. However, many of these artists cannot earn a stable income to make a living from their work. People also need to have access to art education.
I don’t foresee the future being different from the present unless we find unconventional ways of making progress. We need the mainstream community to support our work rather than seeing it as remote from their reality.
Each time I took off my corset to wash, I had the sensation that I lost a part of myself, I felt weak, powerless… my body had become a corset and vice-versa. I had worn foot splints since I was six months old. My childhood was very Forrest Gump-like. Now the technology has improved and they no longer make a noise.
I’m afraid of walking, afraid of falling, afraid of suffering, afraid of fighting, afraid of hallucinogens (having them near me or trying them), afraid of loving, afraid of feeling, afraid of desiring, afraid of the dark, afraid of sex, afraid of living and dying… Facing up to these fears has been my greatest feat. It hasn’t been easy. I’ve had to begin by dealing with my own mental defects. There are some things I’ve asked myself and I’d like to ask you too. Can disabled people conceive or adopt children? Can I be a mother? I’ve considered the possibility of adopting a child. Why not? Would I be a bad mother? What do you need to be a “good” mother? Is it really about your body? What is the question? Why the hell are my sexual and reproductive rights even questioned? What sexual and reproductive rights? It’s in my nature, just like it’s in yours…
Natalia Moreno Rodríguez -Bubulina- is a Colombian social communicator and inclusive contemporary dance instructor. She identifies as a sexual dissident and a woman with diversidad funcional física. She started her human rights activism in 2007, and is part of the founding team of the Colectiva Polimorfas, a support group for women in Diversidad funcional/ Disability in Colombia.
Pandemic Postcards – Canada & Mexico
Curated by Alex Bulmer, the Pandemic Postcards tell the stories of artists within the Deaf and disabled community living through the self-isolation and quarantine period of COVID-19.
Maria del Carmen Camarena is a vocalist who has performed in numerous musical groups. She appeared in the El Rey Nació opera from composer José Luis González Moya in Guadalajara city’s Teatro Diana in 2012 and performed at the fourth Nairobi International Culture Festival in 2016, along with other high-profile performances.
Hanan Hazime is a multidisciplinary artist, creative writer, community arts educator and writing instructor living in Tkaranto/Toronto. She identifies as a Lebanese-Canadian Muslimah Feminist and Mad Pride Activist. When not writing or creating art, Hanan enjoys reading fantasy novels, over-analyzing things, photo-blogging, dancing with faeries in the woods and drinking copious amounts of tea.
Edon Descollines is a visual artist, poet, dancer and actor known for the expressive quality of his performances and for his creativity and commitment. Joe, Jack et John is a theatre company of actors with intellectual disabilities or from diverse cultural backgrounds that produces original, bilingual, multidisciplinary shows combining video, dance and the spoken word.
HARBOURFRONT CENTRE, on Toronto’s waterfront, is an innovative non-profit cultural organization which creates events and activities of excellence that enliven, educate and entertain a diverse public. Our Mission is to nurture the growth of new cultural expression, stimulate Canadian and international interchange and provide a dynamic, accessible environment for the public to experience the marvels of the creative imagination. Our vision is to be a vibrant home for the culture of our time, inspiring people through the magic of the creative spirit. Harbourfront Centre is the producer and presenter of CoMotion Festival 2022, a new multi-disciplinary International Festival of Deaf and Disability Arts, curated by Alex Bulmer.
With 30 professional years across theatre, television, film, radio and education, Alex Bulmer is dedicated to intersectional collaborative art practice, fueled by a curiosity of the improbable and deeply informed by her experience of becoming blind.
She is activated by obstacles, well exposed to the absurd, and embraces generosity, listening, time and uncertainty within her artistic and personal life.
Named one of the most influential disabled artists by UK’s Power Magazine, Bulmer is an award-winning writer, director, actor and dramaturge. She is Artistic Director of Common Boots Theatre, co-founder of Cripping the Stage with British Council Canada, in Toronto, and the Lead Curator of CoMotion 2022, an international Deaf and Disability Arts festival produced by Harbourfront Centre.
Víctor H, Mariana Tirado Martin, Gina Rubio, and
Diego Lamas Encabo – Mexico
Artists Víctor H, Mariana Tirado Martin, Gina Rubio, and Diego Lamas Encabo share their relationship to their art, body, and interior world.
Painting is important for me.
It means I can express myself, regardless of my disability.
I feel free.
I’ve loved cats ever since I was very young, and I paint a lot – not only my cats, but also other ones I imagine and invent.
I intervene pictures by painters I admire, giving form to my ideas.
One way I express my affections is by doing a painting of someone and giving it to them as a present.
Painting makes me both happy and sad.
It makes me sad when I think about what I cannot do.It makes me happy when I feel that a better place exists.
Blue is sadness.
Green, happiness and contentment.
And yellow, peace.
Through colours I express how I feel.
My soul speaks.
As a child I wanted to be an explorer. Some afternoons I’d leave my plastic action figures, put on my Perestroika boots and pack a bag with a rope, a sweater, a dark-green anorak, a few biscuits, a flask and a pair of binoculars (made from toilet paper tubes). Once everything was ready, I’d set off on my adventure and climb up the stairs in the patio of my house, imagining that I was climbing some far-flung mountain.
As I grew older, my dreams of becoming an explorer did not pan out; I didn’t develop in the same way as other adolescents did. I was aware of my body’s fragility, manifested by its lack of physical power. At the same time as these changes and the accompanying emotional distress, I discovered other means of exploring that took me on adventures of a different kind: reading. I started out with comic books called sensacionales ([often] about lucha libre wrestlers) that I picked up at the newspaper stand that I passed on the way to school. After finishing my homework, I read stories about the Wild West or the gritty side of Mexico City. A book fell in my hands a few years later, and I set off on an endless journey of reading. I found that the essay was the best way for me to express my concerns about illness and the literary experience. My interest in inner explorations has made me reflect on family memories and legacies, identity, corporeality, masculinity, sexuality, fragility, autonomy and independence.
My thoughts have also roamed beyond the written word and I have begun exploring the body through photography using the camera on my cell phone. Hence my series of self-portraits allowed me to come to terms with a body I rejected for many years. I continue exploring and trying out new ways of expressing myself to this day.
My life changed radically from one day to the next when I developed Guillain-Barré Syndrome. My entire body stopped moving, I lost my sense of touch. The rhythm of my life changed, yet it continued moving in the same direction. I was all that was left, encased in a body that contained me but failed to recognize me after it had disconnected itself from me. I had to unlearn the things I had learned because they were no longer useful to me. I had to reinvent myself. The same body that I had lived with for fifteen years on all kinds of stages, and whose movements, gestures and actions had helped me draw and pronounce my words, had abandoned me, taking with it my independence and some of my freedom. However, my voice stuck with me. Its strength, cadence and rhythm gave so much life to my stories, and I used it to continue being an oral storyteller. And that’s what I’ve done, despite the syndrome’s severe effects on my physical mobility and proprioception. I’ve now been telling stories for 15 years, helping to build a culture of peace and a more plural society, and showing that disability does not rule out creativity.
Marcos Antonio Guerrero Herrera – Cuba
An introduction to the work and life of the artist Marcos Antonio Guerrero
From a very young age, Marcos Antonio has questioned the commonly accepted notion of reality, based on his experience of parallel worlds. When diagnosed with paranoid schizophrenia as a youth, his world became even more complex and multiple realities became an inseparable part of his daily life. Confronted by the barriers imposed by his condition, he began to use drawing as a useful means of communication.
He started out using small sheets of paper to sketch spaceships, detailing each of their parts and different mechanisms. Over time his drawings became larger and more complex, depicting alien cities and galactic systems. He recounts how he acquired this vast knowledge through his close encounters with extraterrestrial beings and multiple abductions. He is fascinated by these civilizations’ advanced technologies and seeks to make these details accurate in his drawings. Marcos Antonio’s draughtsmanship is very intense, and his drawings express remarkable energy with their exceptional use of colour and bold lines.
Marcos Antonio has been a member of the Art Brut Project Cuba since 2013.
British Council – Mexico
Our Arts and Disability programme has accompanied the development of a new movement in Mexico.
The pandemic arrived into everyone’s home like an uninvited friend. It settled on the couch for months and, as I write this, it’s still around. There has been a pause in several of our programmes, including Arts and Disability, our flagship project that since 2018 has been supporting British and Mexican disabled artist reach new audiences. For the past four years, the programme has witnessed the development of a growing community and movement, which we’ve supported through:
– International showcasing: giving practitioners access to international platforms/audiences, as well as works. In Mexico we launched Trazando Posibilidades, a festival held in 2019 in Guadalajara, in the state of Jalisco. The festival gathered several artists and welcomed delegates from across the Americas, from Argentina, Canada and the UK. In the UK, we continued to work closely with Unlimited, sending delegates from Mexico in 2018 and 2020.
– Capacity building: development of technical skills through a series of workshops.
– Research: developing resources to help the sector improve its accessibility in spaces (through A Puertas Abiertas, a manual on how to create accessible cultural spaces) and through the implementation of Relaxed Performances (Relaxed Performances, an Accessibility Protocol in Spanish).
– New art: providing ongoing support for the co-production of new work in theatre, dance, audio-visual, and new media.
As a result of these collective efforts, the British Council in Mexico has been able, in the past four years, to collaborate with more than 200 artists and 50 organizations and carry out 67 major activities reaching an audience of over 45,000 people.
The arrival of COVID-19 brought limitations to the programme but at the same time allowed us to explore new opportunities. Working with partners, we create a new space for collaboration, creation, and reflection through the Seminar From Inclusion to Interpellation: Scene, Disability and Politics, that explored the need of the arts and culture sectors to work on inclusion in new creative ways, particularly through digital means. Over the course of four months, Cultura UNAM;17, Instituto de Estudios Críticos;Take me somewhere (an advisory committee of artists with disabilities) and the British Council in Mexico brought together institutions from over 12 countries, 50 participants and 18,200 spectators to share our visions for change.
Mariana Gándara, Executive Coordinator of the Ingmar Bergman Extraordinary Chair (cinema and theatre) at Mexico’s National Autonomous University (UNAM) and member of the seminar planning committee, reflects on the experience: “Months ago, at a meeting to plan the seminar, I heard for the first time the use of the term interpellation, as part of the passionate defence of accessibility made by both Benjamin Mayer and Beatriz Miranda from 17, Instituto de Estudios Críticos. Both argued against the current institutional opposition to work towards inclusion. Benjamín and Beatriz, curators of the seminar, were emphatic about the political and ethical needs to use interpellation as the axis of their work. The argument was simple, but powerful: inclusion is an invitation to participate in normality; interpellation the possibility of dismantling it.”
“Normality: Who does it belong to?”, asks Gándara when assessing the impact of the seminar on her understanding of accessibility issues in the cultural sector. “What systems of oppression sustain its practices? Although institutions may be well-intentioned, these conversations have instigated a parallel form of learning, clearly showing the gap between diverse communities and the public policies that control our daily lives.” She concludes that “without asking for permission, interpellation has filtered into daily lives. Where subtitles and Mexican sign language did not previously exist, they are now essential. The advisory board, comprising disabled artists, defines and steers the seminar. It feels like a watershed moment.”
The seminar allowed to identify key new voices in the sector. COVID’s arrival has forced us to revisit standard practises, which means there’s a renewed opportunity to support wider systemic change where these diverse voices find a space.
Deaf Interiors – Canada
The theme of Deaf joy flows through the culmination of a three-month digital artist incubator, presenting the multi-disciplinary works of six Deaf Canadian artists in an online exhibition called “Deaf Interiors.”
In response to the world health crisis and to social distancing measures that exacerbate feelings of isolation, artists gathered online with facilitators Peter Owusu-Ansah and Sage Lovell to share stories, generate ideas, and create work that demonstrates the interior world of Deaf culture, activism, and human connection.
“Deaf Interiors” is a digital adaptation of Crip Interiors, a site-specific installation of grid-like arrangement of life-sized artwork containers that individually and collectively highlight the ways that Deaf and disabled artists negotiate accessibility in the cityscape.
Presented by Creative Users Projects, Tangled Art + Disability, Cultural Toronto Hotspot, Bodies in Translation and Canada Council for the Arts Digital Originals.
Creative Users Projects (CUP) is a not-for-profit disability-led arts organization driven and informed by the legacy of Deaf and Disability Arts, a movement that for 50 years has changed the way we think about disability and inclusion. CUP is dedicated to highlighting disability in the arts in generating audiences, cultivating new talent, diversifying Canada’s arts and culture sector and building more accessible arts spaces in Canada. One such program is Accessing the Arts, an online listing of disability and accessible arts events across Canada.
Tangled Art + Disability is a charitable organization actively working towards creating a more inclusive and accessible arts and culture sector. Our mandate is to support Deaf, Mad and disability-identified artists, to cultivate Deaf, Mad and disability arts in Canada, and to enhance access to the arts for artists and audiences of all abilities. In 2016, Tangled launched a permanent gallery space. Tangled Art Gallery is Canada’s first gallery dedicated to Disability arts, presenting year-round programming focusing on accessible curation and a pillar for the development of Disability aesthetics.
British Council – Canada
Exploring accessibility in the Canadian theatre landscape through the implementation of the Relaxed Performances framework.
As part of Progress, the international festival of performance and ideas, the Theatre Centre in Toronto hosted a one-day event called the Republic of Inclusion in February 2015. Curated by Alex Bulmer and Sarah Garton Stanley, the event called for “a rigorous and provocative discussion about the state of inclusion in our theatre community. A conversation for theatre makers, audiences, leaders, funders, all those in the performance world, and those who are being left out.”
While several interventions were led by Canadian disabled practitioners, British theatre-maker Jess Thom, known for her project Touretteshero, was invited to speak on her confounding experience in a theatre in London. In this anecdote, she recounted specific ways in which theatres were inaccessible because of their attachment to institutional traditions. Frustrated by her continued marginalization as both an artist and audience member, she began advocating for proactive change in mainstream theatre spaces. During her monologue at Progress, she often referred to Relaxed Performance (RP) as a necessary shift in theatre. Relaxed Performance is a practice that aims to rethink theatre conventions and make performances more accessible to both artists and audiences. Thom’s presentation ignited a stimulating conversation amongst participants at the Republic of Inclusion and anchored several relationships that shaped British Council’s commitment to building capacity for cultural workers around access and inclusion in the arts.
We learned from British Council and Bodies in Translation’s 2019 report, Relaxed Performance: Exploring Accessibility in the Canadian Theatre Landscape that “interest in curating accessible experiences is growing among many in the Canadian arts scene. The question of what this means is driving conversations about how this might be accomplished, concretely: What is an accessible arts experience? How does it look different in different segments of the arts landscape? What are the policy implications of accessibility? How does accessibility in the arts relate to larger debates about accessibility in disability studies? What is access, and what is inclusion?”
“Access is about more than simply installing a removable access ramp; it is about more than checking boxes that guarantee compliance with governmental accessibility requirements; it is about more than stating that you welcome a variety of needs in your space. The question of how to ensure that arts patrons can be themselves in arts spaces—and how to open up arts spaces to those who have never considered themselves “arts patrons”—is a critical question for our time.”
Originating in the United Kingdom in the 1990’s, Relaxed Performance (RP) aims “to open up the theatre space to welcome differences. Rather than needing to stay seated and listen silently, these performances invite attendees to move, speak, leave and return, eat, and more. Other modifications to the theatre environment are also often present in RP spaces: for instance, the house lights are often left partially on and sound levels reduced; strobing lights and flashes are reduced or removed; a “chill out space” for people to visit if they wish to take a moment out of the main theatre audience space is provided; actors come forward at the beginning or back at the end of the performance as themselves rather than their characters; and audience members are told what to expect both through the provision of a “visual story” describing the space and performance and through guidance at the beginning of the show. Ticket prices are also often reduced, to provide financial access. These measures are put in place to build a space where people can feel more at home in a theatre and go above and beyond standardized accessibility practices, such as providing accessible washrooms and ramps. In all, these practices remind those in the theatre field and prospective audiences that access is about much more than physical space modifications.”
“RP’s have begun to migrate to the Canadian theatre sector over the past five years. Originally, these performances were geared toward those with sensory differences (e.g., Autism) and were often referred to as “sensory-friendly.” They have since been imagined as providing access to anyone who may feel excluded from “typical” theatre contexts, including people with learning disabilities, Tourette’s syndrome, people bringing children to the theatre, people living with chronic conditions, people unfamiliar with the culture of contemporary theatre, and more. With the growth in interest in RP, there has been a push for more training around how to provide RP to diverse audiences.”
From 2015 to 2020, British Council developed the Relaxed Performance programme, a multi-year initiative actively advocating for access in the arts through RP research, training, and resource sharing.
The many facets of this programme were inspired by the advancement in policy changes and actions towards disability arts in the UK. British Council and its collaborators in Canada initiated the programme to support and strengthen the arts sector to become more proactive and engage in the global discussion on arts, disability, and human rights.
In October 2015, in collaboration with Harbourfront Centre, British Council invited Include Arts (UK) to Toronto to offer a pilot RP training session to 30 arts professionals. Following this pilot, British Council in partnership with Include Arts and Tangled Art + Disability (Canada) designed an RP “train the trainer” programme for 5 facilitators called Access Activators. Access Activators learned to deliver RP trainings to arts-centres and organizations. With the support of the Canada Council for the Arts and the Ontario Arts Council, Access Activators delivered RP trainings to 25 arts and cultural venues across eight Canadian cities between 2016 and 2018. Designed for cross-organizational appeal, the trainings includes learning for front-of-house staff through to executive and artistic directors. Approximately 200 Canadian arts and culture workers received British Council’s RP training and many of those trained have begun to deliver RPs. In February of 2020, 20 d/Deaf, disabled, and allied arts and cultural workers from across Canada attended a four-day Access Activator training programme at the Art Gallery of Ontario in Toronto, expanding the cohort of Access Activators in Canada. We are seeing a wave of engagement with RP principles and practices across the Canadian arts and culture sector through British Council’s RP trainings and the Access Activator programme.
In 2019, British Council in collaboration with Bodies in Translation: Activist Art, Technology and Access to Life (a disability arts and culture partnership project at Re•Vision: The Centre for Art and Social Justice at the University of Guelph), released their report, Relaxed Performance: Exploring Accessibility In The Canadian Theatre Landscape. The Relaxed Performance report summarizes the first research on Relaxed Performance in Canada and outlines findings from research on British Council’s 2016-2018 RP trainings. The report engages the experiences and impacts of RPs from the perspectives of those working on, attending, and writing about them, and offers recommendations for training, research and theory, community building, and policy. The summary booklet Report Highlights: Exploring Accessibility in the Canadian Theatre Landscape was produced in 2020 to highlight findings from the 2019 report.
Moving into 2020 and at the peak of the COVID-19 pandemic, British Council, Tangled Art + Disability, Bodies in Translation, and Canada Council for the Arts, came together to create the Access Activator videos series: 3 short, informational videos that engage arts practitioners from the UK and Canada to explore the principles and practices of RP, its relationship to digital media, and the effects of RP in a broader social context. Each video is available in multiple formats and languages for increased access.
In an effort to extend the reach of RP trainings, the British Council and Bodies in Translation partnered with three universities in Ontario in 2019-2020 to launch the RP Curriculum Pilot. This pilot introduced RP training modules into existing university curriculum in theatre, fashion, and music (choir). Up to 240 students at Ryerson University, York University, and University of Guelph learned to incorporate RP principles into their mid-term and final projects, which were open to the public.
To draw from a more specific example, in a fashion course through the Faculty of Communication & Design at Ryerson University, undergraduate students designed and produced an accessible fashion show called Beauty to be Recognized. Grounded in the principles of RP, crip theory, and disability justice, the show underscored the students’ mission to challenge stereotypes about disability and express disability as desirable in both fashion and the world. During the planning and development phases, students learned from experts not only about incorporating RP frameworks into a fashion show, but also how to apply critical disability and crip theory. Through the learning and execution of the show, the students transformed traditional conventions of fashion and created an experience that honoured the embodied differences of all involved.
During the course of the RP Curriculum Pilot, British Council and Bodies in Translation conducted further research and produced the 2021 report, Relaxed Performance: Exploring University-based Training Across Fashion, Theatre and Choir, which chronicles findings from the pilot. The 2021 curriculum report has also spurred the Relaxed Performance Pedagogical Tool (scheduled for release in 2021). The RP Pedagogical Tool is an easy-step-guide that outlines the vital practice of RP implementation in higher education classrooms. The tool pulls highlights from the pilot findings and recommendations, and includes tools around teaching, praxis, and policy that are grounded within a disability justice framework.
The Relaxed Performance programme presents a landscape of RP in Canada, one that is rapidly growing and transforming. As a starting point for broader and more nuanced conversations around access and inclusion in the arts, RP remains a vital practice which recognizes the value of context and welcomes evolution.
The overall success of the RP programme in Canada has motivated the development of RP programmes throughout the Americas: programmes in Argentina, Chile, and Mexico bring more cultural specificities to this rich model and drive accessibility in the arts and culture into action on an international scale.
Relaxed Performance: Exploring Accessibility In The Canadian Theatre Landscape by Andrea LaMarre, Carla Rice, and Kayla Besse summarizes the first research on Relaxed Performance in Canada. Commissioned by British Council in collaboration with Bodies in Translation: Activist Art, Technology, and Access to Life , a Social Sciences and Humanities Research Council Grant at the University of Guelph, Relaxed Performance presents findings from research on RP training across Canada.
Centre Gabriela Mistral – Chile
As one of the largest cultural centres in Chile, GAM is influencing public policy by making artistic initiatives its vehicle.
Located in Santiago, Centro Gabriela Mistral (GAM) opened in 2010 as a cultural centre with numerous spaces for theatre, dance, circus performances, classical and popular music, crafts, and visual arts quickly establishing itself as one of Chile’s major arts venues.
Due to its importance on the cultural landscape of the capital, GAM has always led in terms of accessibility and inclusive programming. In 2013, it began organising a variety of training courses and seminars for artists and cultural agents to develop new ways of working with a broader spectrum of creators and audiences in mind. One of those initiatives, the Incluye Seminar, is an annual week-long programme of workshops, masterclasses, relaxed performances, films, and lectures on inclusive arts.
The Incluye Seminar began as a response to making the cultural centre more inclusive to audiences that were visiting the space, but had a limited interaction with it due to a disability. It began by creating guided tours of the space for blind and visually-impaired visitors, led by blind and vision-impaired guides, called HAPTO.
GAM Executive Director Felipe Mella underlines the importance of this initiative, “With Incluye, we seek to contribute towards inclusion of all people with disabilities and highlight artistic initiatives that serve as vehicles for social transformation.”
Thanks to a long- standing collaboration with the British Council, Pamela López, Head of Programming and Audiences at GAM, took part in various editions of the Edinburgh Fringe Festival, Made in Scotland Programme and Unlimited Festival where she saw inclusive arts at its best.
In 2018 she brought UK actor and comedian Jess Thom to Chile as part of Incluye’s programme. Her book, “Welcome to Biscuit Land,” her play “Backstage in Biscuit Land,” and her documentary “Me, My Mouth and I” explore her lived experience with Tourette Syndrome. By including all of this work in Incluye’s programme, López emphasizes that “it was a rare opportunity to see inclusive arts as a whole.”
GAM’s commitment to inclusive arts has had many highpoints over the years. The documentary “Lección de música” (The Music Lesson) shared the story of a young autistic woman who learned to conduct a music ensemble using sign language. After the film premiered at GAM, there was a live concert by the ensemble and its conductor. The play “Punto ciego” (Blind Spot) about a witch hunt in the island of Chiloe (south of Chile) in the 1880s, pioneered audio description throughout the performance without using earphones, and the HAPTO project has blind guides lead groups of blindfolded visitors through the permanent collection of the cultural centre, providing a different experience of the heritage art pieces in the collection and of the building itself.
In 2018, GAM introduced relaxed performances to its yearly programme base. By adapting artistic work to better suit the needs of adults and children with learning difficulties, autism, or sensory communication disorders GAM created a more friendly environment at the theatre for these patrons.
López stipulates that these programmes do not yet reflect the full breadth of commitment GAM has for inclusive arts. “Our vision is still 180 degrees in scope. For it to be 360 degrees, we need to make every production and commission in an accessible format. We must incorporate artists with disabilities in every single process, aspect and phase, and generate radical actions to influence public policy in this area.”
Chela de Ferrari – Peru
The collaborative work between the actors and the production team of Hamlet at Teatro La Plaza represented an achievement not only on stage, but above all on a personal level.
Shakespeare’s plays have always interested me. Every time I thought of my next project, the idea of doing a new version of Hamlet came up. However, I always discarded this possibility for the same reason: I could not find the actor for the main protagonist. Until I met Jaime Cruz.
Jaime has worked for more than three years as an usher in La Plaza’s theatre hall, guiding people to their seats and selling programmes. However, his actual dream was to appear on stage as an actor, as he once shared at a staff meeting. Because of his comment, I invited him to have a coffee. His wish was to act on stage, and mine was to do Hamlet. This project, which had remained dormant for several years, was awakened by the new possibilities that an actor like Jaime could bring to the meaning of Hamlet’s words.
A provocation? Undoubtedly. But one that challenged us with the big question, “to be, or not to be”. For people who are disregarded and cannot find a space where they are taken into consideration, what does it mean “to be”? The proposal aimed to question the myths built around Down syndrome and to recontextualise the existential question asked by Hamlet.
Traditionally, the weight of the main character falls on the iconic figure of a “great actor”. This version is composed of eight performers: seven actors with Down syndrome and an actress with an intellectual disability. The message of an individual is here voiced by a group.
During the creation process several questions arose. How do people with cognitive difficulties approach the complexity of Hamlet, his existential questions, and retain his essential aspects? To what extent do the actors in this version have the need to represent themselves through Hamlet? Does this need to be the case for the project to make sense? Can they adapt the work and generate their own narratives through Hamlet? Today, we can answer those questions and say that they have developed their own narrative based on Shakespeare’s text. On the one hand, they take the meaning of the words in the play as a cohesion tool. On the other hand, we have experienced events like the one brought forth by Ximena, one of the actresses. One morning she burst into the middle of an exercise to reveal an existential anxiety: “I no longer know who I am. In the morning I wake up and wonder who I am. Inside, I live two lives. A life that wants to be a neurotypical person and a life that prefers Down syndrome”. Both Ximena and her colleagues have appropriated Hamlet’s words to give them a new meaning.
There are also questions that we leave open. Can our actors, with their own agency, aesthetics and conceptual preferences, co-exist with the theatre management team’s structure? How do we showcase the value of those aesthetics that, according to some mainstream conventions, detract from the performance? I am referring to features such as difficulty in vocalizing, diction problems, pronounced stuttering, tense times, blank moments, and overacting. Can we find other ways of representation?
Theatre rehearsals typically take two to three months. Hamlet took us a whole year of work, because both my processes and those of the actors are slower than others. This was also due to the nature of the project. The play being written as we went along, it was essential for us all to live a time of exploration, research, and collection of materials. The play is a fabric woven with Shakespeare’s text and the actors’ lives. From Hamlet we borrowed the scenes, phrases, monologues and characters that connect with the interests, claims, experiences, realities and reflections of the actors. We use Hamlet. And we do it in total freedom.
A year ago, when we asked the actors “Why do you do theatre?”, their answers puzzled us: “Because I want to be famous”. A couple of days ago we asked them the question again. Their responses were, “To represent people like us” and “To be able to say what I think”.
The life of each member of the production and direction team has been enriched as much, or more, than the actors’. The exchange has confronted us with our own condition and with the question of who we are.
Discreantes – Mexico
An alternative way of assuming precariousness
Several disabled professional artists convened in Mexico City in July 2018 at the invitation of 17, Instituto de Estudios Críticos. At this initial meeting we decided to call ourselves “Discreantes,” a collective whose current members include Maricarmen Graue, a blind cellist, Edgar Lacolz, a writer in a wheelchair, and Pedro Miranda, a blind visual artist.
The following year we decided to join forces and pool ideas to develop an ambitious, multidisciplinary project awarded by Programa de Apoyo a la Producción e Investigación en Arte, Medios y Discapacidad (PAPIAM 2019), supported by the British Council Mexico and Centro Nacional de las Artes (CENART). PAPIAM is a grant for projects by disabled or non-disabled artists linking art and multimedia in different creative fields: music, visual arts, literature, cinema, and performance. We set out to bring together our experience in producing socially engaged work as independent and established Mexican artists.
Our project, called Metodología alternativa para asumir la precariedad (A Different Way of Overcoming Precariousness) is a documentary that exposes precarious situations faced by disabled artists on a daily basis. As we raised questions such as “What is at stake for disabled artists working in precarious situations?”, “What tools must disabled artists use, invent or adapt in order to produce art while living in a state of precariousness?”, and “How does this precariousness manifest itself, and how does ‘Discreantes’ deal with it?”, we wanted to highlight individual practices and collective productions.
The idea is to show audiences how – through situations considered to be economically, physically or creatively precarious – it is possible to develop an intellectually stimulating art project, to adapt tools, and to turn things around to create a cultural product. The documentary shows that disability, similarly to precariousness, can spark creativity and cultural initiatives, or lead to new tools that make an impact on the art scene as a whole. Without downplaying the policies that put disabled people into precarious situations, we channel this precariousness into creativity and protest.
Guided by this critical reflection, in 2020, Pedro Miranda, one of the Discreantes members, invited more disabled artists to come together before the pandemic in a collective called No es Igual (It is not the same), clearly expressing the impact of precarity in our lives in a public manifesto. In this solidarity effort, this collective is a support group for its members, from producing podcast interviews to shed light on its artists, to raising funds for specific health and family matters. While the pandemic has presented a variety of difficulties in the lives of disabled artists, it has made clearer the possibility of transforming precariousness into a methodology to create and produce art.
Due to the epidemiological events that are hitting the world and specifically Mexico, artists with diverse disabilities, from various disciplines, based in different parts of the country, have gathered with a single purpose: to express ourselves with regard to the situation faced by our guild.
We have seen with alarm how many of the events scheduled for the coming months, even up to the end of the year, have been called off due to the cancellation of festivals plus cultural and artistic events, not to mention the closure of theatres, museums, and other artistic platforms. We are not emerging artists. We are a group of artists with diverse recognized trajectories in local, national, and international forums.
This has placed us in a situation of greater vulnerability: as persons with disability we are considered as a minority, and being artists – with disabilities – we are yet in another minority. This means that today we face a more severe crisis due to the events known to all owing to COVID-19.
We are at risk since many of us have compromised immune systems, and let us not forget the lack of work during this situation. Likewise, we see with dismay how vital information is denied to us at the moment due to the inaccessibility of the means by which it is transmitted. How can the Deaf listen to news updates? How can the blind see infographics? How are people with intellectual and psychosocial disabilities being informed about the pandemic and the measures being taken? What kind of information is being received by people with severe or multiple disabilities?
These reasons are enough to bring us together and make ourselves heard on social networks and other digital and analogue media so that we may receive the support we need to endure this long quarantine, and its aftermath, with dignity.
As we are confronted with this reality, we want to inform you of the risks we are facing in the current lockdown, both as disabled persons and as artists, and we request:
*The necessary support to which we are entitled, so that we can continue living our lives as citizens of this country.
*Measures to allow us to make our way through this situation, both economically and socially.
*That people with disabilities and their families be guaranteed access to information in ways that take into account their different conditions.
*Access to services that allow people with disabilities to receive necessary care as needed.
As active members of this society, we commit ourselves to:
*Collaborating in these moments of crisis through our artistic and cultural work, to the greatest extent possible using available channels.
*Pursuing the production and artistic activities we are dedicated to, to the extent that the contingency allows, and to return with greater energy when the situation stabilizes.
*Contribute to the community on the basis of our knowledge and personal experience.
We, the undersigned artists, are certain that as long as our rights as individuals and artists are guaranteed and that we have the necessary support networks, we can come out of this situation together.
Ekiwah Adler, poet
Cristian Arias, performing artist
Erika Bernal, performing artist
Maricarmen Camarena, musical artist
Luis Castro, performing artist
Edgar (Lacolz) González, writer
Maricarmen Graue, musical artist
Martín Valerio Jácome, musical artist
Pedro Miranda Gijón, visual artist
Jorge Olvera Rodríguez, visual artist
Jesús Rodríguez, performing artist
Sara Villanueva, musical artist
Shino Watabe, visual artist
Alejandrina D’Elia – Argentina, Chile & Peru
Alejandrina D’Elia explores past and present accessibility initiatives by various theatres, projects and cultural centres located in Argentina, Chile, and Peru.
Article 30 of the UN Convention on the Rights of Persons with Disabilities (CRPD) describes the rights of disabled people to participate in cultural life, recreation, leisure and sport. Signatories such as Argentina, Chile and Peru have assembled government agencies and ministries to protect these rights. However, disabled people continue to face the most discrimination within society, a problem exacerbated when combined with other factors such as gender, race, ethnic background, geographical location and income level. Private-sector and civil-society actors are therefore advocating for disability issues to be placed on the public agenda, and for action to be taken.
The following initiatives in these three South American countries are leading the way both domestically and in the wider region, thanks to the high quality of their productions created with the participation of disabled people, and supported by the British Council as a partner.
Centro Gabriela Mistral (GAM), located in a historic building in central Santiago, is a cultural centre with 10 rooms for theatre, dance, circus performances, classical and popular music, folk art and conferences. Since 2013, GAM has provided a venue for training courses and participative activities, residencies and the design of accessible content for people with different disabilities. In 2018, the centre began offering “relaxed performances” to give people with cognitive disabilities access to the performing arts through technically and spatially adapted plays. The general public as well as those with physical, learning, communication disabilities, as well as those on the autism spectrum, can participate and take training courses.
Fundación Corpgroup Centro Cultural, situated in central Santiago, is equipped with exhibition spaces, an auditorium, a sculpture garden, and offers a cultural programme (music, theatre, dance, visual arts and film) for adults and children. It hosts local and international events on its premises and around the country. In 2019 it staged a participative production of Irish playwright Brian Friel’s Molly Sweeney: To See and Not See in a multisensory performance accessible for people with visual disabilities. The Compañía de Teatro de Ciegos LUNA [Blind Theatre Company LUNA] trained the cast, gave advice on the staging, produced all of the accessible devices, and in addition to interpreting the voice-overs in the montage. The Orquesta Nacional de Ciegos de Chile [National Orchestra of the Blind of Chile] performed the original score, and an integrated disabled and non-disabled crew worked on various aspects including the play’s production and audio-description design, Braille texts and QR codes. This experience paved the way for other initiatives for groups with different disabilities.
Teatro La Plaza, located in Lima, was set up in 2003 to stage public performances of challenging plays. In 2019 it produced the first free version of Shakespeare’s Hamlet performed by a cast with Down Syndrome. Theatre director Chela Ferrari wrote and directed the play as a collaborative process that took several months and helped break down prejudices; this was Ferrari’s first experience of working with disabled people. The project led to explorations of other techniques such as the Rationale Method.
Mundana is a dance company established in 2017 by dancer and acrobat Inés Coronado who, after developing a disability in one of her legs, embarked on an artistic project that questions the limits of the body while aiming to develop an inclusive society.
Kinesfera is a contemporary dance company whose dancers have a physical disability.
Both companies have participated in local and international festivals; they are also activists and form part of the Latin American dance and inclusion network.
Teatro Nacional Cervantes is attached to Argentina’s Ministry of Culture (Ministerio de Cultura de la Nación), and was inaugurated in Buenos Aires in 1921. It is the first public theatre to offer accessible performances as part of its programme. In 2018, the theatre’s audience development department designed a new programme for disabled people, in conjunction with the accessibility team of the Argentinean government’s Office for Cultural Innovation (Dirección Nacional de Innovación Cultural). The group proposed a physical, sensory and intellectual approach based on three pillars: strategic planning, strengthened technical and human resources, and communication. They designed accessible resources for various groups of disabled people using the social model of disability; specialists from the United Kingdom such as Kirsty Hoyle from Include Arts provided support. In 2018, the play The Extraordinary Life by Argentinean director Mariano Tenconi Blanco, a pilot production, incorporated accessible resources such as audio description, a hearing loop, and sign-language interpretation. Leading civil society organizations working in accessibility helped perform checks every step of the way. In 2019, all of the additional plays included in the programming incorporated accessible performances on a permanent basis. Other additions included theatre programmes using QR codes with and without embossed dots, drinking bowls for guide dogs, tactile visits, pictograms on the webpage, and invitations in Argentinean Sign Language (LSA) with subtitles and audio. The whole process was documented, including interviews with members of the audience exiting the theatre: 61% of those with a hearing disability and 35% of those with a visual impairment answered in the affirmative when asked whether this was the first time they had seen a play at a theatre. These figures still apply in most cultural spaces, laying down a challenge for public policies and cultural promoters when designing cultural projects.
Festival Internacional de Buenos Aires (FIBA) is a well-established cultural event in the region for both local and international visitors. The event brings together a network of independent and official theatres in the city of Buenos Aires. In the summer of 2020, the programme had four themes: gender and diversity, environment, integration, and technology. It marked the first time that integration and cultural accessibility were a core part of the Festival. The British Council designed the strategy, together with the participation of Scottish dancer and choreographer, Claire Cunningham.
An assessment was made of theatres’ accessibility and a circuit was designed with a selection of venues, including accessible resources such as hearing loops in the theatres, sign language interpretation, tactile visits, and audio description. Communication was a vital aspect of the work on printed and online materials. The festival team from the producers to the director received training in cultural accessibility. The British Council inaugurated a videotheque with interviews, including one with Claire Cunningham, in order to generate reference materials. This was the first time that such a festival catered to disabled audiences, setting a benchmark for future editions of the event, and creating a momentum for future programmes on the independent circuit.
Some proposals have been implemented and now form an inherent part of the institutions’ programming. Others continue to be one-off initiatives that are important but hard to keep going. It is essential to have accessible resources for productions and to prepare audiences that have been historically excluded from cultural events. Our countries need to address the issues of disability and art in two ways: from the perspective of audiences, offering accessible resources for the disabled to enjoy cultural programmes and from the standpoint of creators, offering training, grants and production subsidies. Public policies must be permanent and sustainable.
• Raising awareness about the issue in the public and private sector, and among civil society.
• Reminding those in charge of public policies of their duty to protect disability rights and mobilise resources in order to create accessible cultural content.
• Decentralising activities by promoting knowledge transfer to other theatres/bodies around the country and the region.
• Working with disabled people and with interdisciplinary teams on project design, production and implementation.
• Creating a record of information and best practices; sharing local and regional experiences.
• Identifying and locating disabled artists across the country.
• Promoting and continuing training courses for local and foreign specialists.
Aimi Hamraie & Floyd Morris– USA & Jamaica
A survey of accessibility in Kingston, Jamaica
An interview with Aimi Hamraie and Floyd Morris discussing Jamaica’s resilience against inaccessible infrastructure created by colonialism and the creation of the Morris scale.
Hamraie: Could you tell us about how you became interested in how cities are designed and planned?
Morris: I developed blindness at the age of 20 and I came to the city of Kingston at the age of 21. As a blind person, I couldn’t navigate the system.
Sidewalks were riddled with potholes, uneven, unpredictable, and inaccessible. Power companies installed light poles in the middle of the walkways. Wires were sticking out. A blind person using a white cane would have no knowledge of how and where those wires were. Public facilities were built without ramps for wheelchair users. Elevators did not have any Braille inscription. Shopping plazas did not have any form of support structure for persons who are blind and visually-impaired or persons with other physical disabilities.
I read an article of yours in “Disability Studies Quarterly” where you explain the Morris scale for assessing the accessibility of cities. How did you develop this scale?
These are things that persons with disabilities need to be able to function on a day-to-day basis. When I was preparing the article and conducting research on a city, I had to establish a set of criteria in terms of what would constitute minimum accessibility. This is what I regard as the flooring, and what you saw in the [Disability Studies Quarterly] article constitutes a minimum threshold.
Was there a broad coalition of people with different kinds of disabilities creating this minimal standard? How did you make decisions about it?
I’ve been an advocate for persons with disabilities since 1991. I have listened to conversations since that time, because I served in different capacities as minister of government, as a parliamentarian, and as a researcher. I formulated the minimum threshold after going to the meetings and listening to the concerns of persons with disabilities. The research was also driven by literature on the issues of accessibility in the field.
I also looked at countries like the United States, Canada, the UK, Japan, Australia, and New Zealand. I went to New Zealand a couple of years ago, and I was absolutely impressed by the ease at which you can navigate your way around the city of Wellington. The sidewalks were spacious. When you reach a pedestrian crossing, technology would be telling you when to go, when to stop and when you should move. When you go into the various stores…there are special provisions for those who are blind and visually impaired. That exposure and knowledge of the international arena gave me insights when developing the scale to fit the context of a developing country, especially here in the Caribbean, while recognizing our associates’ historical contexts.
Your article offers a really fascinating discussion of how we have to put accessibility in Jamaica in context and think about colonialism. Could you expand on that?
Caribbean countries have been subject to colonial rule for over 300 years. First, the Spaniards came in the 1490s with Christopher Columbus. They occupied the Caribbean until the British came in 1655. The British came and established their own architectural type. This new architecture lasted for well over 300 years because Jamaica gained its independence in the 1960s. There was a wave of independence among English-speaking countries from 1962 through the 1980s. We received political independence, but there was no subsequent effort to make the infrastructure of the region accessible for persons with disabilities. Following independence, Caribbean public infrastructure like schools, churches, shopping plazas, and workplaces were built without any form of access for persons with disabilities. Since the International Year for the Disabled in 1981, disability was seen in the context of social barriers rather than the traditional welfare model of disability. In the 1990s, there were standard rules established to outline certain criteria for making the world more inclusive and accessible to persons with disabilities. The standard rules were not observed because they had no legislative grounding. In the 2000s, the United Nations developed a Convention on the Rights of Persons with Disabilities. The issue of accessibility was fundamental, whether for the built environment, schools, or public health. So we have moved away from a welfare medical model that emerged in a colonial context to that of a social, rights-based model in the 21st century.
Could you say more about accessibility in terms of arts and culture in Jamaica?
I wrote a book (currently in press) on cultural inclusion and music. Jamaica has a thriving and vibrant culture. Reggae music is well-known internationally, but what is not well-known is the contribution of persons with disabilities to that music industry. I have sought to chronicle it by looking at some of the major players in the industry. For example, the oldest musical band on the island is a group of blind and visually-impaired persons that has been around for almost 50 years. I documented how they evolved and how they have survived.
I want to see a world where persons with disabilities are integrated and brought into mainstream society. How we are going to do that is by making sure that public infrastructure is accessible. We have to make sure that information technology is accessible. We have to make sure that our literature or language is accessible. These are some of the things that I would be pushing for.
Aimi Hamraie is associate professor of Medicine, Health, and Society and American Studies at Vanderbilt University, where they also direct the Critical Design Lab. They are the author of “Building Access: Universal Design and the “Politics of Disability” and host of the Contra* podcast.
Senator Dr. Floyd Morris is the Director of the UWI Centre for Disability Studies at UWI Mona. He was recently elected to the powerful United Nations Committee on the Rights of Persons with Disabilities and is the CARICOM Special Rapporteur on Disability. He is the author of several international journal articles and the author of two books ‘By Faith, Not By Sight’ and ‘Political Communication Strategies in Post Independence Jamaica 1972-2006’.