GENESIS OF THE PROJECT- AN OVERVIEW OF THE FIELD

The data addressing resources in benefit of PIMD individuals is difficult to find (“Urgent Need of Data on Puerto Rico’s Adult Population With Intellectual Disabilities”, Newsroom, The Weekly Journal, Jul 14, 2020). However, recent data identifies approximately 1,170,067 individuals in Puerto Rico who have a functional disability: mobility, cognition, living independently, hearing, vision, self care (https://www.cdc.gov/ncbddd/disabilityandhealth/impacts/puerto-rico.html). A a recent letter to President Biden the National Council on Disability, under the title Disparate Treatment of Puerto Rico Residents with Disabilities in Federal Programs and Benefits National Council on Disability, May 25, 2022 summarises the present state of need of support: Puerto Rican individuals with disabilities are living in conditions well below the national average.

Data of the way the specific needs of this population are addressed beyond the basic sources for health and care is not available and is primarily anecdotal from speaking with individuals in service who note that projects of added benefit that can contribute to raise the Quality of Life, for example of music and dance activity, take place only sporadically as one-offs, and mostly depend on the good will of groups with varying levels of skills and knowledge that come and offer projects. The lack of continuity (including archiving and documentation) means that organizations do not build a track record of, in our case, arts related projects that support application to programs such as the National Endowment for the Arts to build projects that to contribute to the well-being of participants with PIMD on a long-term basis. Furthermore, many persons with disabilities, their families and disability service providers, especially in low- and middle-income countries like Puerto Rico, are not aware of the recent advances in arts therapies, dance science, and the range of tools (both in-presence as well as online) that are available and how these can increase the quality of life of individuals with disabilities.

It is crucial to keep addressing the serious and continuous negative impact that the pandemic had on this population. Individuals living with disabilities, many who are also high-risk, were secluded at home or in institutions. The pandemic brought to light the problems for individuals, particularly those in care institutions or with motility challenges for whom the ‘return to normal’ has not taken place, sporadic outburst of COVID or Pneumococcal infections are still causing periods of isolation within institutions with continuous negative impact on health, mental, and social conditions.

YO QUIERO BAILAR: ADDRESING THE NEED

“Little is known about what disabled people go through to access the arts. The routes to access the arts emerge as highly relevant to the question of arts…” (Toward TechnoAccess: A narrative review of disabled and aging experiences of using technology to access the arts, Technology in Society, Volume 65, May 2021). The digital shift of the pandemic, however, brought with it the seeds of new thinking that is beginning to address the aforementioned problem.

There is now ample research supporting the use of technology in creative interventions for individuals with Profound Intellectual and Multiple Disabilities. People with PIMD may benefit from the basic technical characteristics inherent to digital media. Two of the most significant characteristics that should be mentioned here are multimodality and multimediality (Miesenberger et al., 2012). The last enables content to be offered or made accessible equally via different channels, e.g., visual, auditive, haptic, etc. In this way, variants or alternatives can be provided that take into account the respective individual approaches or make the content perceivable in different ways. Multimodality refers additionally to the possible devices, media and tools, i.e., the different possibilities to support technical or digital interaction. This allows, for example, a comprehensive flexibilization and adaptation to the abilities and skills of the users.

In Puerto Rico, work towards access and use (application) of digital tools in creative processes and interventions that support social integration of our disabled population has not yet emerged. By promoting cultural participation Yo Quiero Bailar aims to go beyond the term ‘audience’ a term that is less and less used in the arts industry, as the role clearly is not fit for disabled individuals. Yo Quiero Bailar is designed for participants suggesting an active two-way relationship – an interaction that is not only technological “but also as creative, imaginative, and potentially political mode of being” (Report Digital Access to Arts and Culture, Arts Council England, June 2022).

“Accessibility can be understood in terms of the measures put in place to address participation by those with impairments, both permanent and temporary, as well as both physical and mental, including perceived class and cultural barriers”. In this sense, accessibility is tangible and context-specific – focusing on the use of specific tools to address ALL barriers to engagement.

Recent projects promoting accessibility through technology to foster creative activity for individuals with multiple intellectual and physical disabilities include the UK arts company for neurodivergence DYSPLA, and the Posabilities (British Columbia, CAN) film project and importantly Kunle Adewale and the Arts in Medicine Fellowship in 2021 who brought art activities to elderly in Nigeria through repurposing VR technology.

Yo Quiero Bailar is developed specifically for Puerto Rico, within the context of and informed by these successful international developments. Accessibility needs constant work, it requires changing the habits of the arts sector and modes of production, a willingness to expose hidden biases and yes, it needs financial support.

THE STRUCTURE AND METHODOLOGY

The project Yo Quiero Bailar is proposed as a creative dance and digital intervention for adult participants, in collaboration with the Instituto Psicopedagógico de Puerto Rico with support for the arts of the Instituto de Cultura de Puerto Rico and the National Endowment for the arts.

The project is designed for twelve weeks and is purposely multimedial and multimodal: delivering a series of assisted dance and movement workshops for the residents of IPPR and introducing digital tools and skills (film, photography, digital drawing, music making) to explore and expand the creative expression coming from the movement workshops.

The multimodal and multimedial structure of the project addresses established recommendations to ensure that “content should be simple, consistent, clear, multi-modal, error-tolerant, delay-tolerant, attention-focusing” (Bohman and Anderson, 2005) so that “people’s individual needs must be considered, and creative and appropriate solutions must be found, exploring how multimedia design can support the presentation of content through different sensory ways, so that people with limited and basal capabilities can also benefit” (Keeley and Bernasconi, 2023).

The project aims to provide skills and a platform to give voice to the stories of the participants. The aim is to bring to light how they see the world, their likes, dislikes, their fears and hopes and through this show how they are part of Puerto Rican society, now and in the future, giving us a space to collaboratively show how we want to grow as a caring and fair society for all.

With the project we hope to shape a prototype that could be shared with other organizations and communities in the island, transforming the effort from a single intervention to long term, sustainable action. If you are interested in knowing more about the international context in which Yo Quiero Bailar is situated I encourage you to read Digital participation and digital education for people with profound and multiple disabilities and complex communication that can be accessed at https://www.frontiersin.org/journals/communication/articles/10.3389/fcomm.2023.1229384/full

OUR PARTNERS

Instituto Psicopedagógico de Puerto Rico The Instituto Psicopedagógico de Puerto Rico (Psychopedagogical Institute of Puerto Rico, IPPR) was registered in the Department of State of Puerto Rico on October 8, 1949 the result of the efforts of María Elisa Gómez de Tolosa, a psychologist by profession and mother of a child with Intellectual Disability, who conceived an unprecedented vision: the creation of an institution dedicated to offering integrated services to children with special needs.

The organization's operations began in a humble wooden house rented for those purposes, located on Roosevelt Avenue in San Juan. The house served as a child day care center. Thanks to this service, parents with children with special needs had a place to leave their children in the care of dedicated people, while they could ensure a livelihood for their families. In the 1960s, the Institute received the donation of the land where it is currently located in Bayamón. It is here that the first residential facility was created with the care support of the Spanish order of the Congregation of Hospitaller Sisters of the Sacred Heart of Jesus.

In 1969, 20 years later, thanks to donations from the Federal, State and Kennedy Family government, the Center for Evaluation, Diagnosis and Treatment "John F. Kennedy" and the Teaching Center "Maria E. Gómez de Tolosa." Thanks to these new facilities, the Institute began to offer clinical and educational services to the population with intellectual disabilities in Puerto Rico. Rose Kennedy herself, mother of the then American President John F. Kennedy visited Puerto Rico to witness the inauguration of both centers.

In February 2008, the IPPR established its first community home located in the Jardines de Caparra urbanization, for six (6) male participants. Seven years later, in April 2015, the institution increased the scope of community housing services by establishing the second home for men and the first home for women. (from the ICPR website for more visit: https://www.ipprpr.org/home.html)

The workshops will be supported by volunteer members of AmeriCorps part of the two organizations’ ongoing collaboration. For more visit: https://www.comisionvoluntariado.pr.gov/americorps