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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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Fabiola Zérega – Venezuela

DANCING IN DIVERSITY

Fabiola Zérega shares her experience as a dancer, an advocate of disability rights, and the producer of Am Danza de Habilidades Mixtas

Image of two dancers on a stage cast in pink and blue light. Dancer Fabiola Zérega is sitting in a wheelchair wearing a white/pink full-body leotard. She has one arm on the wheel of her chair, the other is extended, pressing against the chest of the other dancer, looking at her hand. The second dancer is bald, wearing white/pink shorts. They are standing on their toes, looking down and leaning forward supported by Fabiola’s hand on their chest.

 Teatro Teresa Carreño/ Función Entramado/ International Day of Persons with Disabilities, 2017. Photo: @argencucho_artistic_photo

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. 

Fabiola Zérega

Image of two dancers on stage. Dancer Fabiola Zérega is sitting on a chair, their arm raised above their head, touching the second dancer. The chair is draped with fabric covering the bottom section of the image. The second dancer is standing up bent over looking towards the camera. In the background a colour cast of orange, yellow, purple, and blue light is reflecting on the dancers and the fabric.

 Teatro Teresa Carreño/ Función Entramado/ International Day of Persons with Disabilities, 2017. Photo:  @argencucho_artistic_photo

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Critical Design Lab – USA

CONTRA*

A podcast about disability, design justice, and the lifeworld

A banner with the text "Contra*" in black, centred on a white background.

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.

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Centre Gabriela Mistral – Chile

Art as a vehicle for social transformation

As one of the largest cultural centres in Chile, GAM is influencing public policy by making artistic initiatives its vehicle.

A child in a red hoodie smiles at a puppet on the right side of the image. The puppet is facing the child and wearing a small pink knitted hat. The hands of the puppeteer are just visible behind the puppet, disappearing out of the right side of the image.

Relaxed Performance of “Pescador”, GAM, Chile. Photo by Jorge Sánchez.

With Incluye, we seek to contribute towards inclusion of all people with disabilities and highlight artistic initiatives that serve as vehicles for social transformation.”

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.”

A crowd of people stand outside a tall building at night. They are dressed entirely in black, and are grinning and shaking their open hands over their heads. One woman with lowered arms stands in front of the others, backlit slightly from a distant lamppost.

Seminar “Incluye”. ©GAM

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Alejandrina D’Elia – Argentina, Chile & Peru

Ecologies of accessibility

Alejandrina D’Elia explores past and present accessibility initiatives by various theatres, projects and cultural centres located in Argentina, Chile, and Peru.  

A still image from Hamlet. Two performers lay tenderly facing each other in the middle of a blue-and-purple lit black stage. They are both wearing white t-shirts and dark pants, with each performer resting one hand intimately on the other’s waist. At the back of the stage is a large screen showing a close up of the performers from above. Their eyes are closed with their noses pressed together and their lips about to touch.

Hamlet, Teatro La Plaza. Courtesy of Teatro La Plaza.

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.

 

Chile

 

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.

A photo of four dancers seated in a huddle on the floor of a bare studio with a wooden floor. They rest their heads and arms on each other, with eyes closed and bodies entwined. A wheelchair sits empty behind them.

Rehearsal from Mundana, Peru.

Photo by Lucía Alfaro

Peru

 

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.

Interview with Alejandrina D’Elia on cultural accessibility. This interview was done during the International Festival of Buenos Aires in 2020 which included the participation of British choreographer Claire Cunningham. 

 

Argentina

 

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.

 

Opportunities for Policy Change

 

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.

This requires:

• 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.

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