El Alto

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d/Deaf and Disability arts in the Americas

Introduction

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).

Image of a rehearsal. Four performers are sitting on a wooden floor, almost intertwined. A wheelchair can be seen in the background.

Image from Mundana, a dance company established in 2017 by dancer and acrobat Inés Coronado in Peru.  Photo: Lucía Alfaro.

Acknowledgments

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

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Edu O. – Brazil

Dear Bipeds

In an open letter, Edu O. defines bipedalism, outlines the collective experience of the ageing body, and calls for a disability-led paradigm shift.

Edu O., lifting himself above a cedar chair. His arms are placed on the seat of the chair raising his body above it. He is looking directly into the camera, wearing a purple fuzzy shawl, black underwear, and long laced boots that resemble a horse's leg and hoof. In the background is a black painted wall with black painted bricks. the dark brown wooden floors.

Striptease in Nus e [dis] graçados, performed with Estela Lapponi, in Several scenes: accessible scene, Casa de Cultura Mario Quintana, Porto Alegre, 2018. Photo by William Gomes.

Never forget that when we enter spaces, we transform them.

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.

Artist Edu O. is lying on a wheel chair ramp, with tile floors. He is wearing a black shirt, grey rimmed hat, black eye makeup, and red lipstick. His left arm is raised away from his face, making a gesture with his hand. Edu O. is looking directly towards the camera.
Artist Edu O. is sitting on a cobblestone floor, with his legs crossed. His eyes are closed, and his left hand placed behind his head. His right hand rests on his right leg. He is wearing a black shirt, sequence black pants, long false eyelashes, and red lipstick, and laced burgundy boots.

Part of the series Calle e sombrero (Ensaio²: time in dance), UFBA, 2019. Photos by Brisa Andrade

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).

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Bubulina – Colombia

Art-ivism is resistance

Natalia Moreno Rodríguez describes “artivism” and shares the socioeconomic and ableist barriers that disabled artists encounter in Colombia.

Artist Bubulina stands in the centre of a stage performing Tentáculos, the light in the room is warm and red. Behind them is their walker, next to a painting of a figure sitting tenderly holding their body. In front of the stage are two rows of green, spike-leafed plants.

 “Tentáculos” at the Reconference, Nepal, April 2019. Courtesy of Leidy Natalia Moreno Rodríguez.

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.

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. 

Artist Bubulina stands on a blue lit stage in front of a wooden box. They are wearing a sparkly black spaghetti strap dress with black fishnet tights, grey leg braces and black sneakers. Bubulina’s short curly hair is combed over to the right and a small black microphone is looped around their right ear.

Presentation of “Tentáculos” at Punto Gozadera, Mexico City, February 2020. Courtesy of Leidy Natalia Moreno Rodríguez.

Tentáculos: Fragments

 

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.

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