Disabled Creatives Alliance Pilot Program, Garden of Self

Study Duration: October 5, 2024, to January 5, 2025

Primary Investigator: Jennifer McCloskey

Other Facilitators and Researchers: Ryn Delpapa, Jennifer McCloskey, Madhumita Mishra, Maria Alejandra Rosales, Ebirim Praise Tochukwu, Kelly Logan Walker

Abstract

Arts in Medicine is an ever-growing field that integrates creative expression into clinical and community settings across the world. Despite this growth, program development for arts in health engagement with adults with disabilities remains underutilized in global practice, even with substantial evidence supporting the positive impacts on wellbeing, belonging, and other psychosocial benefits. To address this global gap, the Disabled Creatives Alliance was established, conducted, and will be examined in a mixed methods impact program evaluation. This initiative will pilot a series of global participatory art workshops, all titled Garden of Self, delivered both digitally and in person, to adults over the age of eighteen who self-identify as disabled in Myanmar, Nigeria, Peru, the United States, and other countries included online. These workshops will include group building, and discussion of the impact of disability, followed by a creative project subverting the invisibility and isolation of chronic illness. The aim of this study is to provide an intervention to improve short-term wellbeing and positively shift self-perception of participant’s disabilities. This study will also externally develop a sustainable framework for a global network of disabled creatives to continue developing community and shared arts in health initiatives.

Specific Aims

The Disabled Creatives Alliance aims to curate creative spaces for adults with disabilities to participate in art workshops with a focus in improving temporary wellbeing and positively shifting self-perception of participant’s disabilities. The aim of this study is to provide an intervention to improve short-term wellbeing and positively shift self-perception of participant’s disabilities. This study will also externally develop a sustainable framework for a global network of disabled creatives to continue developing community and shared arts in health initiatives.

The main objective is to assess effectiveness of participatory art workshops for adults with disabilities in different countries and platforms, which will be measured through surveys. Other objectives include determining whether participants see improved wellbeing and/or positive disability perception changes and evaluating the effectiveness of Disabled Creates Alliance as a community hub for disabled adults to improve wellbeing, which will be measured through self-reported data and surveys.

Though full conclusions cannot be made until the workshops are completed and evaluated, it can be theorized that by hosting these workshops, participants may see improved temporary wellbeing and a positive shift in self-perception of their disabilities from participating in art making and the Disabled Creatives Alliance at large. From this research, an examination of the range of benefits of art participation for adults with disabilities globally can be further expanded.

Background

Arts in health has emerged as a growing field that integrates creative expression within healthcare and community settings. Despite its increasing recognition, there remains a significant gap in arts programming tailored specifically for adults with disabilities. Existing literature highlights the benefits of arts engagement for individuals with disabilities, particularly in areas such as social inclusion, mental well-being, and overall quality of life (De Beer et al., 2022; Maxwell et al., 2022; Fraser, 2018). For instance, De Beer et al. (2022) examine the experiences of students with invisible disabilities, emphasizing the need for greater inclusivity in both academic and social contexts. Similarly, Wong (2020) advocates for enhanced representation and visibility of people with disabilities, particularly in the arts. Research also underscores the positive impact of community-based programs on social participation and engagement for adults with intellectual and developmental disabilities (Giummarra et al., 2022; Malley et al., 2002; Schleien & Miller, 2010). Although the evidence is compelling, there is a clear need for further development and global implementation of sustainable arts programs for this population. The Disabled Creatives Alliance’s pilot workshops aim to address this gap by fostering a sense of belonging and promoting psychosocial well-being through arts engagement.

Rationale

     The rationale for this study stems from the recognized global need for arts programs that engage adults with disabilities in creative practices to enhance well-being and community participation. Despite growing evidence that arts engagement can significantly improve social inclusion, self-perception, and mental well-being, there is a lack of global, sustained programming that specifically addresses these benefits for disabled populations.

     The Disabled Creatives Alliance aims to bridge this gap by offering a series of participatory arts workshops tailored for disabled adults in various global settings. Current literature, such as the work by De Beer et al. (2022), emphasizes the importance of inclusivity in community and academic settings, while Wong (2020) highlights the need for increased representation of disabled individuals in arts and media. Moreover, research by Fraser (2018) on cognitive disability aesthetics, and Giummarra et al. (2022) on community participation, underscores the transformative power of arts in health interventions.

     The Garden of Self workshops will contribute to the body of knowledge by evaluating the short-term impacts of arts engagement on participants' well-being and self-perception. In particular, the workshops will test whether arts participation can act as a medium to combat the invisibility and isolation often experienced by adults with disabilities. The mixed-methods approach used in this evaluation will provide both quantitative data (through Likert scale surveys) and qualitative insights (via open-ended feedback), contributing to a broader understanding of the psychosocial benefits of arts programs. The research is essential not only to assess the immediate impact on participants, but also to build a sustainable model for future initiatives that foster a global network of disabled creatives.

Methods

     This study will utilize a mixed methods program evaluation to assess the effectiveness of the pilot initiative (Gertler, 2016; Kettner et al., 2023). Quantitative data will be collected through pre- and post-workshop surveys, which will include questions based on a Likert scale to measure participant responses using an interval scale. Likert scales are widely recognized as effective tools for outcome evaluation (Sullivan, 2013). Additionally, the post-workshop survey includes optional open-ended questions to capture qualitative feedback (Rossi et al., 2004). Demographic information, including optional questions regarding disability diagnoses and their impact, will also be collected to enhance the understanding of participant self-reported data and to identify potential gaps in the research. Only registered participant data will be analyzed and only their self-reported data will be collected.

     The survey framework will follow the guidelines outlined by the World Health Organization's Disability Assessment Schedule (WHO-DAS 2.0) to define disability and measure well-being. This framework is widely recognized for its comprehensive approach to assessing disability and related health domains, offering a holistic view of participants' abilities and limitations. Disability will be defined based on the International Classification of Functioning, Disability, and Health (ICF), which considers both physical and mental health dimensions (World Health Organization, 2001). Well-being, a core aspect of this evaluation, will be measured using self-reported assessments of participants' physical, emotional, and social functioning, in alignment with the WHO-DAS 2.0 framework (Üstün et al., 2010). This framework will guide the structure and analysis of the surveys to ensure a robust and comprehensive evaluation of the pilot initiative’s impact.

Data Collection

  • Study Design

    • This study employs a mixed-methods impact program evaluation to test the hypothesis that participation will improve short-term wellbeing and positively shift self-perception of their disabilities. Multiple sets of single-group pre- and post-workshop survey data will be collected, alongside online surveys administered between 10/5/24 and 1/5/25. A mixed qualitative evaluative approach will be used to analyze data gathered from both the workshop and online participants. Analysis will be limited to participant data and their self-reported outcomes.

  • Study Activities

    • A pilot prompt titled Garden of Self was collaboratively developed and implemented in partnership with fellow members of the Global Arts in Medicine Fellowship. This project was subsequently adapted into various mediums, aligning with the results of a needs assessment and each fellow’s area of specialization within their respective artistic modalities.

    • Written instructions and video tutorials will be completed for participants working online and others who cannot finish on time. With participants' consent, their artwork will be displayed in a patchwork format, collectively representing a communal garden.

    • Participants, after reading and signing necessary consent forms, will sit during a small presentation which explains arts in health, who the facilitator is as well as the Global Arts in Medicine Fellowship and the Disabled Creatives Alliance and introduce themselves to each other. In online sessions, this may look slightly different, depending on if participants do a live or pre-recorded session. Written and video instruction will be completed for online participants as well as in person participants who cannot complete their art piece in time. After another short presentation on disability, invisible illness, and its impact, there will be an explanation of the Garden of Self project, and then participants will work on that project for the remainder of the time left. At the end, participants will have time to discuss the program as a group and then complete the post-workshop survey.

  • Recruitment and Enrollment

    • Recruitment for the workshops will be sent through the Disabled Creatives Alliance social media pages, disability advocacy groups, the Global Arts in Medicine Fellowship, as well as other local community groups globally. There will be no screening for participants in this study. All participants will be adults over the age of eighteen and self-identify as disabled. Workshops will be completed from October 5, 2024, to January 5, 2025.

  • Apparatus and Materials

    • Cameras will be used with proper consent for image documentation. Online sessions will be recorded with proper consent. Audio recording will be used for the discussion session of the project and optional post-workshop interviews with proper verbal consent. Both the pre- and post-workshop surveys will be hosted digitally by Google Forms, with proper consent forms completed on the same device. Once the data collection is complete, the information will be used solely for program evaluation purposes and subsequently deleted to ensure participant confidentiality and data privacy.

  • Surveys and Consent Forms

    • Prior to the workshop, participants will be required to sign consent forms that include an informed consent statement. Pre-workshop surveys will collect basic demographic information such as age, gender, and race, as well as self-reported data on the impact of disability and emotional state. Post-workshop surveys will mirror these self-reported measures to assess any positive or negative changes. Additionally, participants will be asked to provide feedback on the effectiveness and challenges of the project, with optional open-ended questions for further comments or reflections on their experience with the program.

    • Photo and audio consent forms will be signed by willing participants, as well as an art release form for displaying images, artwork, and pictures of people with identifiable features on the Disabled Creatives Alliance website, social media spaces, and in literature and presentations.

  • Layout

    • Each in-person workshop will adhere to a consistent layout, featuring a large group table arrangement where participants are seated facing one another. Minor adjustments may be made to accommodate variations in space, furniture, and specific needs. This design fosters a collaborative learning environment and is informed by Jankowska's (2008) research on engagement strategies. According to Jankowska (2008), such a setup enhances participants' sense of community and group cohesion due to the intentional shape and design of the arrangement.

References

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Cameron, C. (2011 Reprint). Disability arts: From the social model to the affirmative model. A Blade of Grass. https://abladeofgrass.org/articles/disability-arts-social-model-affirmative-model/

Davies, C., Knuiman, M., & Rosenberg, M. (2015). The art of being mentally healthy: A study to quantify the relationship between recreational arts engagement and mental well-being in the general population. BMC Public Health, 16(1). https://doi.org/10.1186/s12889-015-2672-7

De Beer, J., Isaacs, L., & Lawrence, T. (2022). The subjective experiences of students with invisible disabilities at a historically disadvantaged university. African Journal of Disability, 11(932). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9257706/

Fraser, B. (2018). Cognitive disability aesthetics. https://library.oapen.org/viewer/web/viewer.html?file=/bitstream/handle/20.500.12657/29689/1000256.pdf?sequence=1&isAllowed=y

Gertler, P. (2016). Impact evaluation in practice. Washington, D.C.: World Bank Publications.

Giummarra, M. J., Randjelovic, I., & O’Brien, L. (2022). Interventions for social and community participation for adults with intellectual disability, psychosocial disability or on the autism spectrum: An umbrella systematic review. Frontiers in Rehabilitation Science, 3(935473). https://doi.org/10.3389/fresc.2022.935473

Kettner, P. M., Moroney, R. M., & Martin, L. L. (2023). Designing and managing programs: An effectiveness-based approach. Sage Publications.

Malley, S. M., Dattilo, J., & Gast, D. L. (2002). Effects of visual arts instruction on the social behaviors of adults with developmental disabilities. Education and Training in Mental Retardation and Developmental Disabilities, 37(4), 363-377.

Maxwell, H., Darcy, S., Grabowski, S., & Onyx, J. (2022). Disability and the arts: Inclusive practice for health and wellbeing. Exploring the Leisure-Health Nexus, 33–51. https://doi.org/10.1079/9781789248166.0002

Rossi, P. H., Lipsey, M. W., & Freeman, H. E. (2004). Evaluation: A systematic approach. Sage Publications.

Schleien, S. J., & Miller, K. D. (2010). Recreational and leisure needs of adults with intellectual disabilities: Art as a tool for social inclusion. Journal of Intellectual Disabilities, 14(2), 135-145. https://doi.org/10.1177/1744629510381945

Sullivan, G. M., & Artino, A. R. (2013). Analyzing and interpreting data from Likert-type scales. Journal of Graduate Medical Education, 5(4), 541–542.

Üstün, T. B., Chatterji, S., Kostanjsek, N., Rehm, J., Kennedy, C., Epping-Jordan, J., ... & Pull, C. (2010). Developing the World Health Organization Disability Assessment Schedule 2.0. Bulletin of the World Health Organization, 88(11), 815-823. https://doi.org/10.2471/BLT.09.067231

Wong, A. (2020). Disability visibility: First-person stories from the twenty-first century. https://books.google.com/books