Déborah Grández is Director of Capaz Peru, an association that develops educational, organizational and cultural projects, for and with people with disabilities. She is also Director of the Encounter of Arts and Disability (EADIS). In this exclusive interview for the 3Love Inc. blog, we talk about the disability rights approach, cultural rights, the instrumentalization of disability, the upcoming productions being prepared by the artists of Capaz Peru, among other topics.
Tell us about the activities that Capaz Peru carries out.
The first thing we do in Capaz is to promote the disability rights approach. We work with the social model of disability, which means that we see disability as a complex social phenomenon that not only involves the individual with his or her diversities, but also his or her interaction with society. So, the more barriers, the more the situation of disability is accentuated. We premiered our first project in 2018 and the following year we created the Arts and Disability Encounter. And recently we are involved in labor rights, in advocacy to achieve socioeconomic inclusion in people with disabilities and their families.
In what ways do art and culture allow people with disabilities to develop their autonomy and expression?
Cultures are a right. Creativity is inherent to human beings. For many years we have had a medical model of disability, which says that people with disabilities are sick or need to be rehabilitated or are special people, to use certain euphemisms. When you mixed the word disability and arts or cultures, the first thing that jumped to mind was therapy. But the arts were never thought of as a life project. People without disabilities have the possibility of choosing arts and cultures as part of their life projects. But cultures are inherent to societies as well. So, people with disabilities have their own cultures, the groups are diverse, there is the deaf culture, the blind culture, even some groups that are quite associated are the groups of people with Down Syndrome and their families, who also have their own cultures. And going back to the first thing, culture is a right. Unfortunately, in this country cultural rights for everyone, whether they have a disability or not, are not fulfilled, because one thinks how to cover those rights if first I have to cover my fundamental rights, because there is an absence of rights in this country and much more for people with disabilities. So, covering our fundamental rights such as housing, education, health, work, etc., makes us “leave aside” cultural rights: entertainment, creation, production, management, etc. But what we have not realized is that we cannot fulfill our fundamental rights if we do not enjoy our cultural rights, which are those that allow us to produce and manifest what I believe, what I think, what I demand, the solutions I want, the representation I want of my collectives on television, in the cinema, in the media in general. For me, cultural rights must be linked to fundamental rights, they must be part of them. The cultural rights of people with disabilities have been in a state of disarray all this time, until it was the disability social movement itself that said: “Wait a minute, I want to be an artist too”. But that brings up another problem, which is the instrumentalization of disability.
What is the instrumentalization of disability?
People with disabilities are subjects of rights. Beyond the fact that we see disability as a social situation, it is also an identity. So, it is important first to name the word disability, at least on this side of the continent, because there are other models as well, such as functional diversity, because we are highlighting that society segregates or does not provide opportunities to other people. A person can choose his identity to be an autistic person or a deaf person, because it is the way he builds his whole life, not only from the disadvantages he has to enjoy rights, but from his way of communication, from what his groups like and what they don’t like, etc. In this sense, unfortunately, different state and private institutions instrumentalize disability. They constantly call us for different private and public events: “I want a blind actor”, “I want a group of dancers with Down Syndrome”, as if I had a little box in which I put them all in and take them out. And when we agree to talk about it, because it’s good to promote the creation of people with disabilities, the first thing the people who participate in these projects do is tell us: “But we don’t have the budget”. Now, having a disability in this country already means an absence of rights, but also being an artist means being in a precarious situation in the enjoyment of your labor rights. Imagine putting those two indicators together. Then, to have a theatrical montage with people with disabilities or a cultural artistic project implies a double budget due to the accessibility requirements and unfortunately we do not accept any invitation, because what they want is to take pictures and videos of us. I have a concept that I share when I provide training on cultural management and disability, which is the showcase effect: they put us all in a showcase to take pictures of us. That is what they want: to instrumentalize to fulfill a quota. Sometimes, even some artists or cultural workers who do not have disabilities and want to work on something new think: “Oh, I should do a play about a blind person, because it will bring me another language”, without taking into account the representation of the blind collective, without consulting or participating. And their work is not even dignified.
How do you work together with the parents and relatives of people with disabilities who attend Capaz Peru?
Currently Capaz has a project that is about to finish its two and a half year program with actors and actresses with Down Syndrome. That is the only open project we have where we work with families. Besides, in the festivals, in the events, in the productions we do or even in the trainings we have given, there is a constant conversation with the families, but also with the supports that the artists choose. Let me explain the project. It started as a comprehensive theater workshop, called “Aliadxs”, and then it became more of an acting training for the cast, we had some experiences and now we are on the way to a residency with actors who do not have disabilities to build a production together. On this path, it is important for us to recognize what the actors’ supports are. Their supports, as it happens with most people with Down syndrome, are their families, so we have built a relationship with the families, which is quite horizontal. However, it is also quite tense, like any living space, because we place a lot of emphasis on autonomy. In this case, the actors recognize that the families are that support. However, there are some families that still maintain an approach of institutionalization, infantilization, tutoring, etc. A big change in the process of this experience has been that we ask the actors to come alone. Most of the people we have in this program are between 22 and 33 years old, they are people who, if they did not have a disability, would go alone to their rehearsals and theater classes, but in this case they do not. So it has been a great change that we have worked on with psychological support, to make Family Schools, with fathers and mothers. Our treatment is always towards the families, which is also a change in the language, because we usually say “mothers of family” or “fathers of family”, but they are a family, because in some specific cases they also receive support from their siblings. We have a parallel project called “Hermanes capaces” (“Capable siblings”), which is a support group for brothers, sisters and siblings of people with disabilities. What we do is to support them so that they can support their siblings to achieve autonomy. We give them workshops on how they could teach their sibling finances, how they could help their sibling look for a job, we have different profiles in the support group. It is a support group run by siblings for siblings. So, it is the same when we do a festival or event, if the person identifies that his support is his mother, his father, his brother or relative, great, we validate it, but all communications are directed towards the person, never towards his companion and all decisions also have to be directed towards him or her. In other words, we have to listen to him or her saying “Yes I accept” or “No I do not accept”, unless it requires another method of communication, which we have also had and for that we use pictograms, sign languages, etc. Now, it is also difficult for families to recognize that they may not need them as much as they think they do.
Do you have any alliance or network with schools for children with disabilities, so that students can take workshops or carry out activities in Capaz during school or maybe at the end of their studies?
We do not have a network or partnership as such. We have a clear position on the direction of Special Basic Education, we believe that ignorance or the absence of knowing how one develops with diversities in relation to disabilities part of our educational system. It is a separatist educational system, which separates special students from regular students. That is where the reality of the problem lies. In addition, the existing laws are also very poorly managed, because they force inclusion, it is not a structural change, but teachers are the ones who suffer, families, educational managers, the entire educational community needs a major structural change. However, we do recognize that there are people who need much more support than others and have special educational needs. Nor are we going to say: “If you come from a CEBE, don’t come”. No, on the contrary, we say “Come, let’s talk”. Many Peruvian families want their children to be in CEBES and not in regular schools. And it is understandable because they do not want their children to be discriminated against. So, they prefer them to be with their peers. In that sense, when we do events, the festival or some activities, we have specific programming days or workshops or we are invited to participate in any activity we have, we do contact some CEBEs that we think are much more flexible. Now we have a project that involves regular schools and special basic education schools. It is called “Education for Diversity”, which is a training and technical assistance program for three schools nationwide: one in Lima, one in Callao and one in the province. Teachers are accompanied, so that they can manage these changes and spread the approach to their colleagues. Then we have another approach to universities. What we do there is to accompany them both in terms of training and technical advice on universal learning design, which is basic to implement inclusive education on campus: adapting curricula, changing methodologies or rather transforming the entire methodology, specific support for the adaptation of materials to the Braille system, etc. In addition, we have realized that in reality, professionals with disabilities go out to a market that does not receive them. That is why we have implemented the area of promotion and labor inclusion and we work with companies to train them and to make the placement of professionals coming out of universities to these work spaces, so that they can have their first professional experience, free of stigmas and where the profile is really included, instead of instrumentalizing it for the quota. It is a two-way job because we also have to train professionals with disabilities who may have just finished their degree or may have finished some time ago, but have never had a job opportunity. So, that’s why now we have opened this other area that is in charge of promoting that. And I think this is important because it is part of looking again at the educational system, not only at the primary and secondary level, but also at the technical-higher level.
What are the next plays that Capaz Perú is preparing?
We have a show we are preparing called “Mi hermana Manta” (“My sister Manta”), which is a didactic show about hearing impairment. It tells the story of a little girl, Silvana, who admires her sister Manta (short for Samanta) because she tells us that she has powers and that is Silvana’s way of internalizing and expressing that her sister has a hearing impairment, because her sister can speak with her hands, she can read lips, she can silence people. It is a didactic performance, musical style, because we rap and do sign language and it is completely accessible for the hearing impaired and the hearing public. Actors and actresses participate, a deaf actor who also uses the linguistic model, a hearing impaired actress who represents her group and other actors. It is an adaptation of an existing children’s story based on the concept of education for diversity. On June 11 and 12 we are going to have 200 school children per day at the Cultural Center of Spain and they will be able to enjoy the didactic performance free of charge, which not only has the theater performance, but also has didactic material that they will be able to take home or to their schools, and we also provide previous didactic material for them to prepare the children. And after the performance we have a discussion with the students because we are sure that they will have many doubts about these methods of communication that they are finding and within our audience goals we want to invite not only regular schools, but also schools of special basic education for deaf people. So, we have two schools for deaf people at the elementary level and one school for people with physical and intellectual disabilities. And on Saturday 15 we have another performance, which is open to the whole family. The second project is the culmination of the complete program we have had with the cast of Aliadxs and it is a play called “Romeo, Juliet and I?”, it is a disability version of Shakespeare’s classic. This play uses this classic as an excuse to talk about the interests of children with Down Syndrome in the creation of their identities, their sexual tastes and their doubts in relation to sexualities and how they also express these demands. We talk a lot about relationships, about sexual consents, about the search for an identity that many times has been constructed by someone else, instead of them being able to construct their own identity. We use Shakespeare and within the story, there are many Juliets, there are many Romeos who tell us their own stories: how they see marriage, falling in love, death. It is a montage that we have decided to face with the support of an artistic residency, with 5 actors who do not have disabilities, they are professionals of the performing arts that we have selected, trained and then met with the children to create this montage. The performances are on July 26 and 27 at 8:00 p.m. at the Cultural Center of Spain. All Capaz performances are free and admission is on a first-come, first-served basis.
What motivated you to create an association that contributes to promoting and defending the rights of people with disabilities?
I think the main encounter with disability was destiny. Like many students, I had many doubts, I finished college making a micro-montage about a young blind man and I made many mistakes, such as instrumentalization. Then I embarked on the creation of my first professional play. We did a montage called “Carga Visual: Episodios escénicos”, with two actors who do see, and an actor with visual impairment. It was a montage that was also testimonial fiction, in relation to blindness in Lima. But in the process, I was diagnosed with a condition that is a neuropathy called fibromyalgia and it was very difficult to continue with the process and accept how my body worked. It took me almost a year to be able to accept this situation and when I returned to the project, I realized that I had something in common with my visually impaired friends that I had not seen before. I know that fibromyalgia is not the same as visual impairment, all disabilities are unique, dynamic and different, but I think I began to feel a certain representation, because I found barriers in society that did not allow me to develop more autonomously, I could not use public transportation because no one would give me a seat, it was difficult to be in places without finding a place to rest and as the years have passed, I have been acquiring other conditions that go more to the autoimmune side, which only have a treatment and have no cure. So, chronic diseases in this society are disabling. I am in my own process of figuring out whether or not I am a disabled person. But after that first project, I felt very uncomfortable being called to Academy spaces to talk about this theater project with visually impaired people and accessibility, and I was meeting with other directors who were not disabled. So, I said, “We have to do something to meet all of us on stage, to see what my friends are doing and for them to see what I do”. And so, we created the Arts and Disability Encounter in 2019. After that experience, with the team we looked at each other and said, “I think we’re doing something interesting.” The community started to trust us very quickly, because I think they saw very genuine interests and under the rights approach. So, after the first festival, I consolidated a team that began to work first in the cultural area, then the educational area, the organizational area and now this last area. Now Capaz is not only a space for activism and volunteering, because we are a volunteer organization. Although we have a for-profit and a non-profit area, the for-profit area supports the non-profit and we work on specific projects. But the work is completely voluntary, we are about 15 volunteers, who have an activity either permanent or for periods of time and now we have been able to add specialists with disabilities, professionals with disabilities from the arts and other professions to support us in the projects that have a budget. Since 2021 Capaz has been employing approximately 100 to 200 people a year. And a goal we have to meet is that 50 to 60% have to be people with disabilities. It’s a way to “hack” the system and start creating our own jobs.
You were telling us about the Encounter of Arts and Disability, of which you are the Director. What is the purpose of this event and who participates?
The Encounter of Arts and Disability (EADIS) is a national and international programming event that happens every two years. The first slogan was: “Free the prejudices” which refers to the fact that people with disabilities can also make art. The second slogan was “Inclusion is everyone’s commitment”, which presented disability more as a social situation. And the third festival was last year, “The disability pride party”, which presented disability as a reason for pride to revalue our identities and our bodies. The international programming is curated and the national programming is based on a national call for entries that we opened. Last year for the first time we were able to open the festival in Arequipa in parallel, with a 15-day exhibition of a collective of women with disabilities. It was an exhibition of visual arts, where they presented the different perspectives of disability that each artist with disabilities has. And in Lima we had two venues: the main one is the Cultural Center of Spain, which is also a co-producer of the festival, and then there is the British Cultural Center. We also held two parallel activities at Teatro La Plaza and at the PUCP Cultural Center. Five projects are selected from this call, depending on the budget, which are given economic support so that they can reinvigorate their project or simply to reinstate it and participate in the event. In addition, the programming also has a pedagogical approach, we make a national and international curatorship of the workshop leaders or teachers that we would like to invite so that audiences that are still in training, such as artists, managers or the public itself with disabilities, can enjoy different workshops that serve as inspiration. And also, for programmers or cultural managers who want to learn about other perspectives on disability, the arts, accessibility, cultures in general. In addition to this approach, we have spaces for reflection, which are the talks. And last year we inaugurated the area of artistic industries that brings together programmers and cultural managers within the framework of the meeting to discuss how we can transform the cultural ecosystem towards a more inclusive and accessible approach for all.
At the level of education and communication, how can we generate greater awareness in the population about the rights of people with disabilities?
I believe that first of all by living together with the group. For a long time, we have grown, studied and worked from coexistence: I live with my group, but with other groups I coexist in a space, and we do not begin to build bridges. People think that inclusion is just that I include the other, and that is a lie. If we all start to be aware that I have something to learn from you and you have something to learn from me, we will start to generate opportunities not only for learning, but also for joint projects, public policies, plays, everything that society does, but it begins by living with the communities. And this cohabitation will make the stigmas and prejudices that we have fall away like veils. And when you start on this path, you begin to see and inhabit the space with the awareness that you are living in a place that was not made for everyone and you begin to ask yourself: How can I contribute so that this space is inhabited by everyone? And I am not only talking about people with disabilities, because people with disabilities are often deprived of their gender orientations, their expressions, their political positions, even what they should say or what should be demanded, as if we were second-class citizens. And I think that starts with the recognition that I too, at some point when I become an adult, may acquire a disability, and I think that is where we begin to see things differently. Rights are not negotiable and that is very clear to us. My advice is that we make the decision, although perhaps at the beginning we may do things that sound very instrumentalizing or make many mistakes, but there are people who have already carved the path and you are not building on infertile ground. On the contrary, there are many possibilities of cultural consumption within the collective. We are almost 4 million people with disabilities in Peru.
