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This book was an outcome of a collaboration between Pacta and EnAble India, to conduct an exploratory study of legal guardianship practices for people with intellectual and developmental disabilities (IDD) within the Indian context. Pacta brought me in to help make this study more accessible, using visual narratives to encourage readers to understand the role of guardianship today, question it, and imagine a future where people with IDD can live a life of autonomy and self-determination.
The resulting story, Kimaya’s home, is a glimpse into the life of the protagonist, Kimaya, as she finds a new home to lease. Kimaya is an individual with IDD who lives independently, pays her rent, and lives with her 2 cats and 14 plants. The story, although quite simple, depicts the various factors that enable Kimaya to live with self-determination and negotiate the complexities of choosing a home by articulating her decisions, supported by family and friends.
Research papers are quite often perceived to be walls of text, the language and technicality making the matter inaccessible for most readers. The attempt through this work was not to ‘simplify’ the study but rather to bring the world that the research took place in to be within the reach of the reader, inciting curiosity and an urge to understand. The fact that the story was future facing, an ‘aspirational’ telling that quite often isn’t the case for most individuals with IDD, it is also intended to be used as facilitation tool to begin conversations within circles that include individuals with IDD and their families. It not only reimagines the role of the individual with IDD as a self advocate, but also the role their family and friends play to enable self determination.
A page depicting supported decision-making, as facilitated for Kimaya.
One of the more specific practices the story depicts is that of supported decision making. It is a guardianship practice that respects an individual’s autonomy and provides them the agency to make decisions for themselves. Just as Sagar is shown to assist Kimaya through her decision-making process using icons and images, each individual might require a different approach to supported decision-making. This limits the involvement of a guardian to that of a facilitator of decisions, instead of substituting the individual’s capacity entirely. Even today, the concept of supported decision-making might reveal gaps in our socio-legal infrastructure which makes it hard to achieve, but it also initiates a larger process of building a more inclusive society and a legal system that embraces neurodiversity.
Working on Kimaya’s home has been a wonderful opportunity for me to grow as a sequential artist, challenging me with questions of representation, agency and autonomy within the everyday settings that the story depicts. It reifies the many possibilities of visual narratives to aid research efforts, in the hope of making information more accessible and actionable.
