With the staggering amount of loss America has faced over the past year, you'd think our culture would be better equipped to handle death. Unfortunately, modern end-of-life practices are prohibitively expensive, overly clinical, and often difficult to access. Designer Aishwarya Janwadkar sees an emphasis on profit and a lack of empathy as the central flaws of these current models.
"Many older adults living with a chronic life-threatening illness either do not receive any palliative care or receive hospice care only in the last phase of their illness," she said in a statement. "This is in part because capitalism pathologizes sickness as something to be fixed or cured…Given the rising population of older adults in the U.S and the necropolitics of COVID–19, it is imperative to build expansive care systems that give older adults control and autonomy over their own death and extend support to family caregivers."
Janwadkar decided to use her design and organizing skills to imagine a more empathetic alternative. In the speculative design Negentropic Landscapes, she and her team of collaborators build a hypothetical community that makes space for death planning, grief, and community support. This green space resembles an especially ambitious park, featuring a garden, playground, and craft center in addition to robust resources for seniors, the ailing, and their families. In this model, the traditional nursing home becomes an artist residency, faith centers provide space for communal and solitary healing, and the terminally ill can use virtual reality or psychedelic plants to move through grief. In addition to Negentropic Landscapes' emphatic compassion for humans, the model is also environmentally friendly. This sustainable space imagines river clay as a resource for urns and burial spaces that restore the land through composting.
Janwadkar co-created the final model of this exciting project through a series of participatory workshops with a wide range of experts in the field of care. The workshops focused on Los Angeles' Crenshaw, a rapidly gentrifying, predominantly Black neighborhood that hosts the largest number of seniors in the city. Despite the community's heightened need for hospice care, it is not only difficult to access, but stigmatized.
"Dr. William Morris, a palliative and hospice care specialist, mentioned that the African American community is particularly skeptical of hospice care services because to them hospice might mean giving up on life and an attack by the healthcare system to deny them treatment," said Janwadkar. "[It] is both more challenging and at the same time of the greatest importance to change perceptions of what hospice is or can be."
In order to sketch this more empathetic community model, the team engaged in a series of activities. The first asked collaborators to examine their neighborhoods as they already were, and to outline existing resources for end-of-life care. In an activity inspired by James Rojas' community organizing toolkit Place-It, collaborators then used research from interviews with residents to build 2D models of neighborhoods that would more efficiently meet their needs. Following Rojas' technique, participants then presented their models with examples of activities that their hypothetical communities could host.
"Most collaborators organized senior living and childcare services together surrounded by green space and intergenerational activities such as gardening and arts and crafts," said Janwadkar. "Everyone's arrangements seemed to gravitate towards a community core that offered the most comfortable care and…educational resources around hospice care."
The result was an idyllic green space that not only provided resource for communities in immediate need, but engaged with creatives and young people. Experts saw this integrated approach as crucial for encouraging the members of a community to support their most isolated neighbors.
Janwadkar recalled a conversation with her collaborator Dr. Freddi Segal-Gidan, Director of the USC/Rancho California Alzheimer's Disease Center (CADC). "She talked about how nursing homes have gotten a bad reputation because they have turned into isolated islands that only older adults go to," she said. "Her site arrangement emphasized building intergenerational infrastructure."
Such a model restores agency to seniors, the ailing, and their families at crucial, inevitable moments when conscious care is especially essential. Instead of forcing communities to figuratively bury their interactions with death, it becomes a part of the community in a way that both acknowledges and respects its inevitability. This approach makes moments of personal and collective crisis much more manageable, and far less lonely.
Janwadkar calls out culture's dominant care models as purposely disordered by labeling them as entropic. Through designing a more thoughtful system based on its opposite, negentropy, she highlights sustainable organizing as the most effective alternative. The robust structure of Negentropic Landscapes is also modeled after the cyclical nature of death, revealing it to be an inherently efficient system. An embrace of this process encourages flexibility and collaboration while providing the community with the means and incentive to support itself.
"Negentropic Landscapes is an approach to building communities that support processes of death and dying," Janwadkar said. "Spaces are open to constant revisitations and reconstructions of their identities and future based on acceptance and openness rather than rejection and blind allegiance to the status quo. They are designed not to confine people's choices in the name of safety, but to expand them in the name of living a worthwhile life."