UB receives $2.5 million Mellon grant to address support needs of caregivers, those with disabilities

UB has received a $2.5 million grant from The Mellon Foundation in support of a new interdisciplinary research project that seeks to better understand and address issues faced by caregivers and those with disabilities.

The Communities of Care project derives inspiration from an existing, though informal, “communities of care” social strategy. This concept recognizes that care is delivered not only by the health care system, but additionally through significant community-level support systems within families, among friends, throughout neighborhoods, and other networks. In this context, the project focuses on those with disabilities and caregivers, who are frequently women of color.

Communities of Care will combine the expertise of UB’s Center for Disability Studies (CDS) and the Institute for Research and Education on Women and Gender (Gender Institute) to develop elements both within the university and throughout the larger community. With Buffalo as the study’s nucleus, the project will explore these local care networks to identify the everyday ways that low-income, racialized and disabled people balance life, work and other responsibilities while navigating health care options when critical infrastructure and resources are otherwise lacking.

“This transformational funding from the Mellon Foundation will give our researchers the ability to explore health inequities that profoundly impact caregivers in Buffalo,” says Robin Schulze, dean of the College of Arts and Sciences. “It will allow them to collect critical insights from members of the community that will help change our city for the better.”

The project, which includes curriculum development and new faculty positions within the university, will provide a knowledge platform for caregivers and those receiving care at the intersection of disability, race and gender.

Various community initiatives such as collecting oral histories, cultivating artistic production and writing workshops will provide information resources for people looking for ideas, inspiration and encouragement from those who have had similar experiences.

“Collecting this kind of humanities-based evidence, archiving what’s gathered and making it searchable, with the consent of their creators, will allow future researchers and community members to access the experiences and voices of people who have been historically silenced,” says Michael Rembis, associate professor of history, one of the grant’s co-principal investigators and director of the university’s Center for Disability Studies. “We’ll gain new perspectives on the delivery of health care, the working conditions for employees and other valuable information related to physical health, mental health, nutrition and well-being.”

Beginning Dec. 1 and unfolding over three years, the project will build and curate a website where people can access the stories related to care. There will be a searchable database with transcribed audio interviews.

“The key here is the power of storytelling,” notes Victoria Wolcott, a co-principal investigator and professor of history who directs the university’s Gender Institute. “The humanities are well situated to gather and collect these important stories and create the space required to create new levels of awareness by sharing those narratives with the broader public.”

As part of the grant, the university will be hiring three new faculty members, creating opportunities for postdoctoral fellows and inviting visiting scholars to the campus and wider community while developing new curriculum and expanding the presence and role of both the Gender Institute and the Center for Disability Studies.

“This grant will help place UB at the center of medical humanities studies by looking at the multiple factors related to how marginalized communities receive health care in the city,” says Wolcott. “It’s a demonstration of the many possible paths for UB to realize its ambition to becoming a Top 25 public university.”

Insights from the project would apply not just to Buffalo, but to people elsewhere engaged with creating communities to address issues of care, according to Jo L. Freudenheim, SUNY Distinguished Professor in the Department of Epidemiology and Environmental Health, School of Public Health and Health Professions, who is the third of the grant’s three co-principal investigators.

“The collaboration between the Gender Institute and the CDS makes UB an excellent place to do this work,” says Freudenheim. “Buffalo is a racially diverse city, with a strong community of disabled people and their advocates.

“As someone who works in public health, it is exciting to be part of a project that is focused on leveraging the humanities to address significant issues that affect our world.”

The grant comes during the final phase of the university’s historic Boldly Buffalo campaign, which recently surpassed its billion-dollar goal. At its conclusion in June 2024, it will be one of the largest comprehensive campaigns by a public university in the Northeast and the largest campaign UB has ever undertaken, in both impact and duration.