Creating recovery: a case-study of how autistic people, families, health professionals & artists in Peru can build inclusive learning through COVID-19
Lead Research Organisation:
Queen Mary University of London
Department Name: Drama
Abstract
This case-study interrogates how innovative, theatre-based methodologies can be adapted to enable resilience to and inclusive recovery from Covid-19 by autistic individuals. HERITAGE (PI) will lead a multidisciplinary study that brings together expertise and knowledge from academics (arts/humanities/medicine), arts practitioners including Peruvian theatre company La Plaza and British theatre company Flute Theatre, autistic people and their families, healthcare workers and civil society organisations.
While the pandemic continues to impact the lives of people around the globe, 'individuals with autism spectrum disorder are being identified a part of a group at higher risk for complications from Covid-19' (Eshraghi et al., 2020). As stay-at-home and social distancing protocol made access to much needed therapies impossible for many families, Flute developed innovative ways of working online to build the resilience and enable the recovery of autistic young people within the context of COVID-19.
Teatro La Plaza is one of Latin America's leading theatre organisations. It recently completed a two-year neurodiverse theatre project (for actors and audiences) that resulted in an internationally acclaimed production of Hamlet and, since itstheatre was closed in March 2020, has reached over 700,000 audience members through online performances and virtual workshops. La Plaza is keen to continue previous work with neurodiverse actors and audiences using Flute's online performance strategies, to inform the development of arts-based strategies for disability-inclusive recovery.
For over 20 years Flute has been developing the Hunter Heartbeat Method, a series of sensory drama games based on Shakespearean rhythms and language, created by Kelly Hunter MBE, offering autistic people an opportunity to express themselves (see: https://flutetheatre.co.uk/changing-lives-of-people-with-autism/hunterheartbeatmethod/ https://www.amazon.co.uk/Shakespeares-Heartbeat-Kelly-Hunter/dp/1138016977).
This project will investigate how Flute's innovative participatory methodologies can be adapted by Spanish-speaking theatre-makers in Peru, testing how autistic individuals and their families in Latin America can gain access to support from arts organisations throughout the pandemic that reduces social isolation.
The methodologies developed by Flute and La Plaza will be disseminated through observation, engagement and discussion with three arts organisations working in Argentina (Crear Vale la Pena), Colombia Fundación Batuta) and Brazil (Redes da Maré) who are part of a regional network on arts and mental health established by HERITAGE (https://peoplespalaceprojects.org.uk/en/projects/building-resilience/). The network will then seek to establish mechanisms for wider dissemination and implementation.
Peru's National Plan for People with Autism Spectrum Disorder (2019-2021) describes the four interconnected axes or approaches that will underpin its programme: 1) Human Rights: to guarantee the State's political, legal and ethical responsibility to guarantee the respect, protection and promotion of the rights of people with ASD in order to overcome discriminatory practices and social inequalities that affect them. 2) Equality: to reduce the profound social disadvantage experienced by people with ASD and take into account gender and a range of other socio-economic or cultural factors which produce inequalities. 3) Intercultural: to respect cultural differences as a pillar of a just society means to accept neurodiversity as a part of the human condition. 4) Intergenerational: to create interventions that recognises the generational interdependence within families and the importance of reciprocal relations between different ages. The case-study will explore how each of these approaches can be advanced by establishing community-based partnerships between artists, health care workers, neighbours (i.e. local audiences), families and autistic individuals.
While the pandemic continues to impact the lives of people around the globe, 'individuals with autism spectrum disorder are being identified a part of a group at higher risk for complications from Covid-19' (Eshraghi et al., 2020). As stay-at-home and social distancing protocol made access to much needed therapies impossible for many families, Flute developed innovative ways of working online to build the resilience and enable the recovery of autistic young people within the context of COVID-19.
Teatro La Plaza is one of Latin America's leading theatre organisations. It recently completed a two-year neurodiverse theatre project (for actors and audiences) that resulted in an internationally acclaimed production of Hamlet and, since itstheatre was closed in March 2020, has reached over 700,000 audience members through online performances and virtual workshops. La Plaza is keen to continue previous work with neurodiverse actors and audiences using Flute's online performance strategies, to inform the development of arts-based strategies for disability-inclusive recovery.
For over 20 years Flute has been developing the Hunter Heartbeat Method, a series of sensory drama games based on Shakespearean rhythms and language, created by Kelly Hunter MBE, offering autistic people an opportunity to express themselves (see: https://flutetheatre.co.uk/changing-lives-of-people-with-autism/hunterheartbeatmethod/ https://www.amazon.co.uk/Shakespeares-Heartbeat-Kelly-Hunter/dp/1138016977).
This project will investigate how Flute's innovative participatory methodologies can be adapted by Spanish-speaking theatre-makers in Peru, testing how autistic individuals and their families in Latin America can gain access to support from arts organisations throughout the pandemic that reduces social isolation.
The methodologies developed by Flute and La Plaza will be disseminated through observation, engagement and discussion with three arts organisations working in Argentina (Crear Vale la Pena), Colombia Fundación Batuta) and Brazil (Redes da Maré) who are part of a regional network on arts and mental health established by HERITAGE (https://peoplespalaceprojects.org.uk/en/projects/building-resilience/). The network will then seek to establish mechanisms for wider dissemination and implementation.
Peru's National Plan for People with Autism Spectrum Disorder (2019-2021) describes the four interconnected axes or approaches that will underpin its programme: 1) Human Rights: to guarantee the State's political, legal and ethical responsibility to guarantee the respect, protection and promotion of the rights of people with ASD in order to overcome discriminatory practices and social inequalities that affect them. 2) Equality: to reduce the profound social disadvantage experienced by people with ASD and take into account gender and a range of other socio-economic or cultural factors which produce inequalities. 3) Intercultural: to respect cultural differences as a pillar of a just society means to accept neurodiversity as a part of the human condition. 4) Intergenerational: to create interventions that recognises the generational interdependence within families and the importance of reciprocal relations between different ages. The case-study will explore how each of these approaches can be advanced by establishing community-based partnerships between artists, health care workers, neighbours (i.e. local audiences), families and autistic individuals.
| Title | Heartbeat Short Documentary Film |
| Description | This a short film documentary about the Heartbeat project produced by Teatro La Plaza and directed by Melanie Muedas. It's in Spanish and English, with subtitles in English. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2021 |
| Impact | The development of this short film has allowed us to share more details about the project and its participants: autistic individuals and their families, actors and directors. Since the project was entirely delivered online, it was very important to show the 'behind the scenes' of the process. |
| URL | https://vimeo.com/618965372/d755efe39f |
| Title | The Tempest/La Tempestad |
| Description | As a result of the research process and the artistic collaboration between the two theatre companies - Flute Theatre (UK) and Teatro La Plaza (Peru) - an interactive online show was created for and with autistic individuals. The performance is based on characters and themes of the play The Tempest by William Shakespeare and it has a version in English and another one in Spanish. It can be represented by 6-12 actors playing with 1-2 autistic participants each time. In the scope of the project, there were 20 performances in total. |
| Type Of Art | Performance (Music, Dance, Drama, etc) |
| Year Produced | 2021 |
| Impact | The actors had the opportunity to play with 10 autistic participants (and their families) during the process of making The Tempest. In each performance there were observers invited who came to watch the performance via Zoom. In total the performances reached an audience of 250-400 individuals in different countries. |
| Description | Members of Flute Theatre and Teatro La Plaza, as well as representatives of arts organizations and civil society highlighted several lessons learned during the Heartbeat Project that they will take away with them and implement in their future work. Professional participants from Flute Theatre focused on the consolidation of the method and the teamwork they do as a theatre company. The director mentioned that the process of facilitating the method to be leveraged by Teatro La Plaza and creating a production of "The Tempest" allowed her to better understand her method and learn how to adapt it to the virtual world, thus consolidating her work. Producers at Flute Theatre agreed and emphasized that the experience allowed them to reflect on their work, acknowledging and appreciating it more, besides realizing new aspects they had not noticed before. "We are passing this to someone else, and when you have to pass something to someone else, you have to reflect on what you are doing. You have to reflect how you will pass this and then you reflect once it's passed. And that gave us the perspective to see what we are doing and maybe even give more value to what we are doing and maybe even discover new things that that we were not seeing we were not able to see before." (Producer, Flute Theatre) Flute's Director also noted that the knowledge transfer process allowed the Flute company to see their own growth reflected in the work done by the cast at Teatro La Plaza. They realized the skills they had acquired with time. She associates this learning opportunity with how empowered the cast at her theatre company felt upon acknowledging that everyone in the company is capable of leading games and passing a method along to others. This statement was mirrored by the company members. "It's a really great moment of kind of hindsight where you can look back and remember how you felt the start of that experience and how daunting it is () These people kind of gain a new kind of freedom in their performance and in themselves. But also watching that with hindsight, and I've been through that, too, I now can see that I'm a different performer than I was two years ago." (Actress, Flute Theatre) Additionally, several actors at Flute Theatre mentioned that interacting with the cast at Teatro La Plaza has allowed them to discover new ways to play the games and incorporate new elements. The cast at Teatro La Plaza mentioned that they noticed how their British peers learned some rhythms, movements, and expressions from Latin America. Finally, the British theatre company identified learning about Peruvian culture. The producers referred to the Peruvian diversity and spirit and, along with the British cast, they highlighted the opportunity of getting to know the participating families from Peru, their strength and bravery to keep moving forward, and the trusting relationship that was created, thus making them feel like a big family at work. In turn, the producers at Teatro La Plaza highlighted several lessons learned from their experience working with Flute Theatre: How practical they were in their decision-making while always being focused on the autistic participants and their needs; being flexible before changes and learning how to problem-solve; working with the families and autistic participants to create a bond through the screen and become part of their world, and offering a more inclusive perspective of autistic people to recognize their independence and open up to other ways to develop projects and researches while using the theatre. "Personally, as a human being, I believe I was able to get rid of my prejudice and relate to the participants, you know? As I was saying, at first, my tone of voice was actually different. 'Hi, how are you?' as if they were little kids, which changed in the end, you know? I understood their independence from a different perspective." (Producer, Teatro La Plaza) Regarding the lessons learned by the cast at Teatro La Plaza, theatre members highlighted the opportunity to meet autistic people and develop their own abilities to "be present" with them. They mentioned that the project allowed them to get to know and learn more about the worlds of autistic individuals and connect with them from a loving perspective, being in the here and now. These lessons came from the orientations they received during the training process?some of them mentioned that they'll continue to follow these instructions in new projects and in their daily lives. "One sentence that I kept playing in my head?and I even wrote down on my notebook?is that you must not fear an anticipated disaster, as Kelly was telling us She said we cannot respond to something that has not happened. We often asked, 'Well, Kelly, what if this or that happens? What if participants do this?' And, at a given moment, she said, 'No, don't think about what hasn't happened yet. Think only about the here and now Open up your heart. Open it up, as well as all your senses, and connect with those people. You'll then get an answer on how to react to what is happening, but don't try to look into the future." (Actor, Teatro La Plaza) Flute Theatre's director noted that her work changes actors and actresses because it demands that they be present and focus on the person who is before them. She associates this learning opportunity with the empowerment of actors, which she was able to witness during a performance by one of the Peruvian actors during the dissemination stage: "And that's when we have that amazing answer for one of the Peruvian actors, where he just flew. It was like I could never have articulated it better myself. He just, he really wanted to be able to share this in this new way. It was a brave new world, new way of seeing the world, new way of understanding that you don't have to control everything, it is beautiful. And it really made me feel the enormity of what we may well have achieved, actually. Endlessly talking about transforming people's lives and changing the world one person at a time, and it has to be for the actors as well. So, to be empowered." (Director, Flute Theatre) For the cast at Teatro La Plaza, this project offered them an opportunity to think of the theatre from a different perspective: through active listening and reacting to what happens, to what participants offer them. They associate it with going back to the basics of theatre, which imply the gathering of people and having an active spectator, which allows for more proximity and familiarity with the audience in order to tailor the performance to them. Upon reflecting on the lessons learned, the cast at Teatro La Plaza mentioned that they feel inspired to do theatre with a bigger social impact, thus growing closer to people who usually don't have access to theatre performances. "Most of the questions we ask ourselves in theatres in Peru is how to bring more people to the performances. Here, I realized that was not the question we should be asking, but rather how we can reach out to the audience that doesn't have access to the theatre." (Actor, Teatro La Plaza) Observers from arts organizations and civil society acknowledged lessons learned relating to the arts, to education, and to health. From an artist environment, they listed lessons related to the importance of theatre games and managing your voice and body to focus on the present, to take a plunge into making art without the fear of taking risks, according to the sensibility and expressiveness of each participant. Additionally, they listed lessons related to characteristics of the work that actors do, such as perseverance and teamwork; patience and empathy to connect with the participants, offering love and care to promote their well-being, and accepting what each participant has to offer and give. "I'm really interested in what was said about patience, because it's really like stopping the world and waiting for as long as need for the other person to join in That's very interesting, because we must give them time. Everything is so rushed now, as if whoever does it faster wins. That's not it That has nothing to do with it and it doesn't work based on speed, right? It seems to be about patience, empathy, and surrender, you know? It seems that the kids surrender themselves with body and soul, right? It's very, very interesting." (Observer, Arts Organization) From an educational perspective, observers from civil society highlighted the use of certain artistic resources identified during the theatrical performances, which are teaching tools used in a distance learning environment. One of them pointed out how important it is to identify the stimuli that work better for each participant, so that they can be applied and worked continuously with the support of the family. From a health perspective, observers from civil society highlighted the importance of the artistic tools used in the play to get closer and be more connected with autistic persons based on feelings. Finally, observers listed lessons for inclusion, especially how it can be promoted through different channels, including the arts, which is recognized as a tool for change that fosters communication and human development. |
| Exploitation Route | Project Continuity and Dissemination Autistic individuals, their families, and the theatre companies expressed their interest in continuing the work initiated by the Heartbeat Project. Autistic persons wish to continue to act and their families want to continue to count on a space that will allow their children to learn and enjoy themselves. Flute Theatre expressed their interest to continue to work with Teatro La Plaza and expand the project throughout Latin America. In turn, Teatro La Plaza will try to disseminate the project and raise funds to continue working on it, so they can work with neurodiverse individuals and contribute to their inclusion in society. Observers agreed and expressed their interest in continuing to receive information about the project in the future, especially about the Hunter Heartbeat method and its adaptation to local contexts. New Exchanges, Other Uses and Spaces for the Method Most observers from arts organizations and civil society, as well as the families of people with ASD, believe that it is relevant and feasible that the Heartbeat Project method could be leveraged by other spaces. Consequently, they are interested in participating and collaborating in future opportunities to transfer this knowledge. One example of their participation is the support that families could offer to disseminate the work that has been done, thus encouraging other families and organizations to join in. "I hope that we, as parents, can contribute and disseminate the project as much as possible, so we'll raise awareness of it somehow by knocking on some doors so other people can find out about this situation, you know? So they can see how things are working. They'll see how these dynamics, this work process can be inclusive and help children, even the younger ones." (Mother of an autistic participant) An especially relevant element to assess future opportunities of leveraging the process is the perspective that Kelly Hunter, method creator, has brought to the Heartbeat Project. She believes that there is a clear dissemination model and that the actors and actresses at her theatre company would be able to accomplish that. As for the informers, they listed several spaces that they believe could leverage the Hunter Heartbeat method: ? Educational Spaces: At elementary schools, high schools, and universities. More specifically, Basic Special Education Centres (CEBE ? Centros Educativos Básicos Especiales), Services to Support and Advise on Special Education Needs (SAANEE ? Servicio de Apoyo y Asesoramiento para la Atención a las Necesidades Educativas Especiales) with the Ministry of Education in Peru, as well as universities, especially when training professionals in the areas of psychology, education, and arts. ? Artistic Spaces: At arts organizations and theatre groups in Peru and Latin America, as well as the Arts at School Program (PASE ? Programa de Artes en la Escuela) directed at educators interested in artistic tools, as well as the Conecta Program, which is directed at artists?both of whom are managed by the Ministry of Culture in Peru. Additionally, a coop was suggested to gather artists, educators, and sponsors in order to replicate the experience and train other artists. ? Health-Related Spaces: At community mobilization and participation services at community health centres, which started to work with the Cultural Points Programs (Programa Puntos de Cultura) managed by the Ministry of Culture in Peru, as well as other private health institutions. ? Civil Society Organizations: In parents associations and organizations (e.g., Cerrito Azul, Puno Corazón Azul) that work with people with ASD. Additionally, observers and theatre company members identified new potential uses for the method. In Education: (1) offering it as a tool for educators working with autistic persons and (2) using it as an alternative to the Reading Plan of the Ministry of Education in Peru, which is directed at students with severe special needs. In Health: (1) Using it to soothe autistic children during visits to the dentist and (2) offering it as a resource for parents to strengthen their relationship with autistic family members and foster skill development. A highlighted aspect, which increases the viability of future transfers of knowledge and new uses, is that the method does not require a complete theatre play in order to be implemented. As the director at Flute Theatre said, it can be used with only a few games because it is a flexible tool that can be adapted to different contexts and situations, thus being used by people who are not actors. "Any teacher across the world could sit in a circle and make some heartbeats with their kids and play a few games and then introduce a few more games so it doesn't have to be the whole play. " (Flute Theatre Director) In addition to identifying challenges and obstacles, informers also proposed different strategies to facilitate the transfer of knowledge and implementation of the method at a larger scale: ? Raising awareness of the work with the autistic population among decision makers. ? Raising awareness of the role that the arts play in human development and health. ? Conducting studies about the situation of autistic persons in Peru. ? Coordinating the work of disseminating and implementing the method through a network of organizations and institutions. These networks could also use the method, learn about it, and exchange experiences about different uses and benefits. ? Optimizing the use of human resources, thus adapting the play so that it can be facilitated by fewer people or include more autistic persons at each performance. The latter is suggested as a possible adaptation to severity level, thus offering group sessions to autistic persons with lower severity and individual sessions for those who have severe autism. ? Cutting down the length of the play to promote more sessions with more autistic persons. ? Offering an in-person version to mitigate the technology gap. ? Representatives from arts organizations suggested that we should first focus on leveraging the method among actors because they are able to understand it more quickly. ? Culturally adapting the play to the target audience (i.e., making it more adequate for each context as far as the story, costume, and set used. "Another interesting element is the context. It could be adapted to the region, thinking of the local target audience, right? () it could use, for example, colours, sets, contexts, and plays that are local, regional, or national, thus adapting a short story to the location and using what is more accessible and familiar than a Shakespeare play may be." (Observer, Ministry of Culture in Peru) |
| Sectors | Communities and Social Services/Policy,Creative Economy,Digital/Communication/Information Technologies (including Software),Education,Healthcare,Leisure Activities, including Sports, Recreation and Tourism,Government, Democracy and Justice,Culture, Heritage, Museums and Collections |
| URL | https://peoplespalaceprojects.org.uk/en/projects/heartbeat-creating-recovery/ |
| Description | BENEFITS OF THE HEARTBEAT PROJECT To autistic individuals: The theatrical performances facilitated by the Heartbeat Project have brought considerable benefits to autistic persons, which were observed during the LTDs and identified by their families, the theatre companies, and the observers from civil society and arts organisations. Among these benefits are: ? Enjoying theatre games: With each performance, all of the autistic persons showed that they enjoyed themselves by laughing and using their energy in participating in the game. Evidence of their enjoyment is that some of them continued to play those games and/or sing the songs after the performance was over. ? Promoting well-being and releasing the tension: These benefits were mainly highlighted by family members, some of whom indicated that the ability to move and scream during the games allowed their children to release some tension. Members of Teatro La Plaza emphasised how these games provide well-being to this population, especially amid the COVID-19 pandemic. ? Fostering a space for communication and interaction: Families and observers indicated that, thanks to the different stimuli and pleasant environment offered by the actors and actresses, autistic persons were able to interact and communicate remotely with people who are not in their immediate surroundings. For some of the actors at Teatro La Plaza, having repeated showings played a crucial part in promoting more interaction and gaining trust among the participants and the actors and actresses. ? A place to make friends: Several participants identified the actors and actresses as "friends". During the performances, some of them showed that they wish to become closer to the cast?they showed affection, asked questions to get to know them better, and/or greeted them in English after recognising many of them as foreigners. Family members and observers from civil society emphasised how much it benefited autistic persons. "There was a moment when I felt I was part of their world And they no longer felt like they were alone, you know? That they have friends?which is something very hard for them to do. So, now, they have friends. They're happy they made friends at Flute and at La Plaza, too." (Mother of one of the autistic participants) ? Acknowledging autistic persons and building their self-esteem: Families and observers indicated that autistic persons are usually deal with distance and rejection. They said that the performance brought them a loving gaze that made them feel welcome, accepted, and respected, in addition to placing them at the centre of the play. Observers mentioned the way participants were treated, such as when the actors and actresses congratulated them after a game: "You did so well!" Or when they greeted them or said goodbye by singing their name?which increased their self-esteem. "This experience starts with someone singing or saying your name, and then it goes around to the next person, you know? So, after 10 people have sung or said your name, you feel energised, right? Imagine hearing your name sung 10 times and how you then find your place in the world? (Observer, civil society) ? Stimuli and deployment of cognitive, emotional, and motor skills: "The one thing I know is how to read the autistic individual to the best of my ability and adapt the work so that they can flourish", indicates Director Kelly Hunter, who creates theatre plays that give an opportunity for autistic persons to stimulate certain abilities. Families and observers mentioned the following: attention, memory, identifying and expressing emotions, imagination, moving the body in space, and balance. Besides, during the performances it was observed that this is a space in which autistic persons deploy different abilities, such as intelligence and memory to quickly understand the dynamics of the game, remembering them, and even anticipating what they'll be asked to do or say. The aforementioned benefits have also been observed during performances with participants who have more difficulty interacting and communicating with others?that was the only group that had weekly representations during the LTD. Throughout those four weeks, Heartbeat became a more comfortable and familiar space where they interacted with other people and enjoyed playing theatre games?sometimes they participated for one straight hour. The one teenager used her abilities to remember the games one week after another and perform several of them by herself, which was surprising to her mother, who emphasised that there was an "immediate effect" after each performance of a game and smiled as she mentioned that it was as if her daughter had said, "Listen, I can do anything, but I'll only do it when I want to." The director at Flute Theatre acknowledged this process and emphasised that the accomplishments indicate that the participant may have even shown her personality during the performance: "She started to have the chance to show that she liked it. So, she and then if you start to have the chance to say that, then you sort of she showed herself to be who she is. She showed her personality more so through pleasure she was able to show her personality.() Actually, she enjoyed how funny these things are. And she has a wicked sense of humour, I think that girl and she was able you know, she loves that. So, and all of that is about personality." (Flute Theatre Director) Lastly, informers highlighted some of the benefits related to the performing arts at the theatre and the inclusion of autistic persons, which we mention below. ? Closeness to the theatre: Some autistic persons acknowledged that the performances were useful to "learn to act" and, according to several family members, participants referred to it as "theatre classes." One of the participants, who had never acted before, learned throughout the project that he enjoys making silly faces and speak in different voices, which was an experience that brought him close to his dream of being a comedy actor. ? Artist expression within the community: Observers indicated that theatre games create a space for autistic persons to express themselves, perform the arts, and share it with the community. During the performances, some participants being observed shared their artistic talents. One of them enjoys remixing music in his spare time and making animations using his voice. At the performances, he uses different voices and displayed a different tone during one of the games of the play. ? Access to artistic spaces and inclusion for this population: According to the informers, the project was able to create an artistic space dedicated to autistic persons, in which they are the protagonists and where activities were designed based on their characteristics. Additionally, experiencing inclusion was an item mentioned by some of the autistic participants and their mothers, who said they were thankful for being "chosen" to participate in the project and be part of a theatre group. "I was only going to act once in my life, but Here I feel like (opens eyes). I feel included, as part of a group that, if I'm not mistaken, is doing something so incredible like acting before kids." (Autistic participant, 13 years old) In turn, observers from arts organisations added that the project helps to give visibility to autistic persons and raise awareness of inclusion among society. For the Families Family members stated that they feel happy and thankful when they see their delighted children participating in theatre games, being able to share this activity with them. According to the director at Flute Theatre, this playful experience also has a positive impact on parents because it allows them to see their situation from a new perspective, turning things around when it comes to the difficulties they face when having an autistic child, and share a pleasant experience with them?especially considering all the stressors brought about by the COVID-19 pandemic. "What I've realised this work gives the opportunity to do is, is somehow flip that problem. I think I may I've said this before, flip that problem to its opposite, turn that fear into love, you know, and actually say this is for the time that you're with us. This person isn't a problem at all, it's actually a great source of pleasure and joy. And we can share this incredible space where we're through art, we're playing."(Director, Flute Theatre) On the other hand, observers highlighted that theatre games offer tools for families to be closer to their children in a different way and to create an opportunity to build skills in a new way, such as by using their body. About this subject, some mothers mentioned that theatre games have given them tools to hold the attention of their children and allowed them to emphasise certain learning capabilities. "You must make a happy face, a sad face, and so many other things. So, it's as if we had an opportunity to emphasise emotions, you know? They explain it in such a beautiful way and there's not much more to explain (laughs)." (Mother of an autistic participant) Additionally, parents of the autistic persons indicated that, after they experienced rejection from society, the project was an opportunity to meet other families, share experiences, and feel included themselves. "We consider ourselves a family where there's inclusion without prejudice. We have very few opportunities coming our way and, to him, this was a great opportunity, and it helps us a lot as a family, you know?" (Father of an autistic participant) The producers at Teatro La Plaza pointed out the need to belong among some of the participating families, adding that creating bonds was beneficial for them. The producers at Flute Theatre also acknowledged that the families found an inclusive space at the Heartbeat Project, which they attribute to a place that offers them a loving environment of trust and acceptance. "We create this safe space where nothing is wrong, nothing is right. You are how you are. You do what you do. And we love it. And the families can sense this and can feel this". (Producer, Flute Theatre) |
| First Year Of Impact | 2021 |
| Sector | Communities and Social Services/Policy,Creative Economy,Digital/Communication/Information Technologies (including Software),Education,Healthcare,Leisure Activities, including Sports, Recreation and Tourism,Government, Democracy and Justice,Culture, Heritage, Museums and Collections |
| Impact Types | Cultural,Societal,Economic,Policy & public services |
| Description | Conference organised by the Peruvian Ministry of Development Social Inclusion (MINSA): "Un Peru Inclusivo rumbo al Bicentenario" (Pedro Rothstein participated on behalf of Paul Heritage) |
| Geographic Reach | South America |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | Building Inclusive Recovery through Theatre (BIRTh): people with autism going beyond the COVID-19 pandemic in Peru |
| Amount | £99,966 (GBP) |
| Funding ID | AH/X008576/1 |
| Organisation | Arts & Humanities Research Council (AHRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 05/2023 |
| End | 01/2024 |
| Description | CRONICAS (UPCH) Collaborative research partnership |
| Organisation | Cayetano Heredia University |
| Department | Centre of Excellence in Chronic Diseases |
| Country | Peru |
| Sector | Academic/University |
| PI Contribution | The Principal Investigator Paul Heritage and his team have coordinated the project, in liaison with the local partners in Peru, designing, delivering and evaluating all phases of the research. |
| Collaborator Contribution | The Co-Investigator Francisco Diez-Canseco and his team have led the delivery of research activities in Peru, including data collection and analysis (online non-participant observations, online semi-structured interviews, and online focus groups). |
| Impact | - Case-study final report - Internal analysis report |
| Start Year | 2021 |
| Description | Flute Theatre collaboration partnership |
| Organisation | Flute Theatre |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | People's Palace Projects led the application process and the grant management, as well as coordinating and liaising with all the local partners in Peru and the UK. |
| Collaborator Contribution | The Flute Theatre's artistic director Kelly Hunter MBE has led the artistic activities in the project, organising the rehearsals, training and co-creation workshops with Teatro La Plaza (La Plaza Theater) in order to transfer the Hunter Heartbeat methodology. Together they also devised an interactive online performance of the Tempest/La Tempestad created for an with autistic people. |
| Impact | - Co-creation of an online interactive show for autistic people based on The Tempest (William Shakespeare). - Transfer of the Hunter Heartbeat methodology from one theatre company to the other in the context of a one-month Digital Theatre Laboratory on the platform Zoom. |
| Start Year | 2021 |
| Description | 6th International Conference on Disability and Development: Disability and COVID-19 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | COVID-19 has dominated global discourse for the last 18 months as the pandemic impacts everyone, everywhere. There is growing evidence that people with disabilities and their families are particularly at risk during the pandemic, in terms of: -Increased risk of death and hospitalisation; - Exclusion from the COVID-19 response actions (e.g. information and vaccination); - Adverse consequences of COVID-19 control activities (e.g. lockdown and social distancing); - Negative impacts on health (e.g. reduction in rehabilitation care). The Conference seeks to bring together people to discuss and debate Disability and COVID-19. The focus will be on new research findings, methodologies and tools and implications of evidence for policy and practice. The focus will include both low-, middle and high-income settings as well as humanitarian contexts. Prof. Paul Heritage and his research team have participated in one of the discussion sessions with a pre-recorded video presentation presenting the case study and some of the findings. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.lshtm.ac.uk/newsevents/events/6th-international-conference-disability-and-development-di... |
| Description | Conference on Research and Public Policies in Mental Health, Universidad Concepción (Chile) and Chilean Health Ministery (Pedro Rothstein presenting research findings on behalf of Prof. Paul Heritage) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | Pedro Rothstein (on behalf of Prof. Heritage) presented the Heartbeat project finding at an online research conference on mental health and public policies in Chile. Under the motto "Mental health in times of uncertainty" (Salud mental en tiempos de incertidumbre), on November 17th and 24th 2021, the VI Conference on Research and Public Policies in Mental Health (VI Jornadas de Investigación en Políticas Públicas y) was held, organized by the Department of Mental Health of the Ministry of Health in Chile (Departamento de Salud Mental, Minsal) in conjunction with the Universidad de Concepción (UdeC), through its doctorates in Mental Health and Psychology. The sessions were held in a virtual format and included the participation of academics and researchers from different universities and research centres, as well as managers and professionals in the area working in Chile and other Latin American countries. Through these conferences, the Minsal sought to offer a space to disseminate current research on relevant mental health problems and their approach strategies, sensitize decision-makers and other relevant agents, stimulate collaborative work between researchers from different disciplines, managers, professional teams and authorities, contributing to the creation of a collaborative culture between academia and those who generate and manage public policy. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://noticias.udec.cl/udec-y-minsal-revisaron-avances-de-investigacion-en-salud-mental-para-proye... |
| Description | Digital Theatre Laboratory (Hunter Heartbeat method training workshops) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | During a period of 4 weeks, 6 actors from the British theatre company Flute Theatre engaged with 6 actors from the Peruvian theatre company Teatro La Plaza to teach and transfer their working skills in the scope of the Hunter Heartbeat method. From Monday to Wednesday, they trained together for a total of 6h hours each day, and on Thursdays and Fridays a total of 3 hours each day during a whole month led by Flute's artistic director and creator of the method, Kelly Hunter. In order to learn this theatrical method, the Peruvian actors also played and engaged with young autistic people who are part of Flute's network of collaborators. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Innovative methods for researching disability and COVID-19 in the Global South Workshop (Pedro Rothstein presenting project findings on behalf of Prof. Paul Heritage) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | This workshop, aimed at academics and practitioners alike, will enable participants to learn about innovative and equitable ways of engaging with disability research in a development context. It will share learning and reflections by a research network of case study projects on the impact of COVID-19 on people with disabilities in different contexts to get participants thinking about new and different ways of doing research that are equitable, promote co-production approaches, and use creative as well as traditional methods to generate evidence on disability. While the focus of the workshop is on research, it will be relevant for anyone who gathers and analyses data on disability, including those working outside of academia, for example policymakers, NGOs and development consultants, Disabled People's Organisations, advocates, activists, and students. Schedule and how it works The event will begin with an introduction and brief overview of the work carried out by Disability Under Siege project, which coordinated the case study network. Participants will then join the workshops of their choice. There are two sessions, which each have two workshops running simultaneously. Participants can choose which workshops to attend during the registration process. The event will finish with a short talk from a keynote speaker from the UN Partnership for the Rights of Persons with Disabilities (UNPRPD) and final reflections on the event. The timings for the event are as follows: 13:00 - 13:25 Introduction and reflections on Disability Under Siege project 13:30 - 14:50 First workshop session (incl. short break): 1A: Partnering with Disabled People's Organisations OR 1B: Working with people with disabilities as co-researchers 15:00 - 16:20 Second workshop session (incl. short break): 2A: Researching disability in a pandemic and other crises OR 2B: Conducting research with children with disabilities 16:30 - 17:00 Keynote speaker - Dr Ola Abu Alghaib (UNPRPD) and conclusions Workshop session 1A: Partnering with Disabled People's Organisations During this workshop, case study research teams will explore how researchers and DPOs have worked together successfully to produce evidence that both enhances academic knowledge and is useful for grassroots organising seeking to affect change. The event will include a 'talk show' style discussion with a panel of activists from South African Disabled People's Organisations, who will reflect on the synergies and tensions when orking with national and international researchers, particularly in the context of a global pandemic. The session will consider the benefits of collaboration between researchers and grassroots organisations, and will allow time for a brainstorming activity and audience Q&A. Workshop session 1B: Working with people with disabilities as co-researchers Peer-research can challenge established research cultures which are often exported from high- to low-income countries. It can allow people with disabilities to frame questions and develop novel methods. This workshop will include reflections from peer researchers working on experiences of doing research as a person with disability. Topics covered include reflections on training and support needs, accessibility, safeguarding, working with funding and timescale constraints, and how peer researchers can be involved in output production. The workshop will be hosted by researchers from Ghana, Indonesia, Uganda, and Zimbabwe, and will include whiteboard animations and pre-recorded films by co-researchers with disabilities (with captions). This will be followed by an audience Q&A. Workshop session 2A: Researching disability during a pandemic and other crises The focus of this workshop will be on how to research disability in a context of man-made and non-man-made crises. The COVID-19 added just another layer on top for many countries already experiencing conflict, violence, corruption, and poverty, all of which are likely to disproportionately impact on people with disabilities. The workshop will include two presentations on the experiences of local researchers in Palestine (West Bank and Gaza), Lebanon, and Ukraine (TBC), and the challenges and opportunities of carrying out research with persons with disabilities under these circumstances. There will be opportunity for discussion following each case studies, with participants asked to think about how such difficult circumstances can be navigated and how research needs to adaptive and flexible. Workshop session 2B: Conducting research with children with disabilities This workshop will explore innovative methods of interacting with children with disabilities, and present learning points and experience of two case study projects that worked with children with disabilities. The highlight of the session will be a 15-minute interactive demonstration of the "Heartbeat Method" a theatre-based method during which a director and Peruvian theatre group will engage in a live performance with two families with autistic children in Peru. There will be short video presentations of the case study projects and their work in Nepal and Peru, followed by a conversation with reflections on challenges and opportunities in working with children with disabilities, followed by an audience Q&A. Further information and accessibility The event will take place on Zoom and links will be sent to registrants via email. All sessions will be recorded. Live captions will be available for all sessions and regular break will be built into each session throughout the afternoon. We are committed to ensuring this event is accessible as possible, so please let us know about any other access requirements during the booking process or get in touch with any queries on disabilityundersiege@contacts.bham.ac.uk. About the organisers The workshop is run by the GCRF Network+ Disability Under Siege project and a network of 8 case studies into the impact of COVID-19 on people with disabilities in different LMIC contexts: Building back better: Disability-inclusive health as a legacy of the COVID-19 pandemic in Zimbabwe (led by Dr Hannah Kuper, LSHTM) Creating recovery: a case-study of how autistic people, families, health professionals & artists in Peru can build inclusive learning through COVID-19 (led by Prof Paul Heritage, Queen Mary University of London) A Comparative Case Study on the Impacts of COVID-19 on Persons with Disabilities in Jordan, Lebanon and Palestine (led by Prof Dina Kiwan, University of Birmingham) The impact of COVID-19 on people living with psychosocial disabilities in Ghana and Indonesia and priorities for inclusive recovery (led by Dr Ursula Read, King's College London) The impacts of COVID-19 on Persons with Disabilities in Ukraine (with a particular focus on internally displaced Persons with Disabilities) (led by Dr Kiril Sharapov, Edinburgh Napier University) Implementing participatory-action research to explore the impact of COVID on war-affected disabled populations, including ex-child soldiers, in Uganda (led by Dr Rachel Murray, University of Bristol) Participatory Action Research with Disabled Adolescents in Nepal (PARDAN) to develop methods and materials to understand their experience of COVID-19 (led by Dr Joanna Morrison, University College London) Socio-economic, wellbeing and human rights related experiences of people with disabilities in Covid-19 times in South Africa (Dr Mary Wickenden, Institute of Development Studies) The GCRF Network+ Disability Under Siege and case study projects have been funded by UK Research and Innovation as part of the Global Challenges Research Fund. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.eventbrite.co.uk/e/innovative-methods-for-researching-disability-covid19-in-the-global-s... |
| Description | Panel discussion at FOOT30 Conference, University of Toronto (Pedro Rothstein and Aline Navegantes on behalf of Prof. Paul Heritage) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | Team members of People's Palace Projects (PPP), Pedro Rothstein and Aline Navegantes wrote an essay paper based on the research project and presented the paper at an online conference organised by the Centre of Drama, Theatre and Performance Studies, Faculty of Arts and Science of the University of Toronto, Canada. This paper panel was about playing games and sports -a topic subject that directly links with the Heartbeat project - and the PPP researchers were in conversation with another research project from South Africa. This event was part of "Hopeful Positions, or: Playing in Precarity - The 30th Anniversary of FOOT (Forum of Original Theatre/Theory/Thought)", which took place on the 17th and 18th February 2022. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.foot30.com/program/ |
| Description | Public Dissemination Webinars hosted by Teatro La Plaza |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | During the course of two weeks, Teatro La Plaza organised a series of daily webinars open to the public in order to share their experience of training with Flute Theatre and learning the Hunter Heartbeat method. These online presentations were delivered by the actors and the production team in Peru and it was aimed at other artists and theatre organisations, policymakers, civil society associations and NGOs working with autistic communities in Peru and other Latin American countries (Argentina, Brazil, Colombia). The overall attendance was around 120 people altogether. |
| Year(s) Of Engagement Activity | 2021 |