The Pandemic Cancelled It, and They Never Brought It Back: Stories of Loss, Change, and Hope

As the COVID-19 pandemic closed doors and narrowed connections, people with intellectual and developmental disabilities faced heightened isolation and vulnerability--but they also discovered new ways to be seen, heard, and connected. Through their own lenses, these photographs capture moments of strength, loss, insight, and truth. They challenge us to foster inclusion in our everyday lives and to prepare for the future so that no one is left behind in times of crisis.

The Pandemic Cancelled It, and They Never Brought It Back: Stories of Loss, Change, and Hope presents a deeply human look at how the daily lives and participation of 18 adults with intellectual and developmental disabilities living in Wisconsin were impacted during the pandemic--one photograph, one story at a time.

Photovoice--a powerful research method rooted in empowerment and documentary photography--amplifies voices too often excluded from conversations that shape our world. By putting cameras and storytelling into the hands of people with intellectual and developmental disabilities, this book shares their lived experiences with honesty, vulnerability, and strength. Photovoice offers a creative, accessible, and dignified way to communicate experiences that might otherwise go unseen.

Featuring original artwork by Wisconsin artists with disabilities, this book is both a research project and a work of art--a testament to resilience, perspective, and the enduring need to be heard.

The Ausderau Lab is focused on improving the health and well-being of individuals with intellectual and developmental disabilities and their families. Dr. Ausderau’s research considers the individual, family, caregiving community, and the person’s environment when looking at a person’s development and well-being. The Ausderau Lab uses diverse research methods to better understand neurodiversity, intellectual and developmental disabilities, and disease processes and their effect on an individual’s development, engagement in meaningful occupations, and community engagement. Dr. Ausderau is also invested in inclusive research, elevating the voices and goals of the people and communities that her research focuses on. The Ausderau Lab collaborates with students, trainees, clinicians, university researchers, researchers with lived experience, individuals, and organizations to maintain accountability to the communities involved in the research.

This book was made possible through the hard work and dedication of many individuals including the Ausderau Lab, research partners with lived experience, and community partners.