Professor Amanda Apgar Works with Students to Launch Open Access Database of Nearly 500 Memoirs by Parents of Disabled Children

Over the course of researching her book The Disabled Child: Memoirs of a Normal Future, Amanda Apgar, associate professor of women’s and gender studies, compiled a large database of memoirs written by parents of disabled children. Originally, Apgar meant to keep the database just for her personal research use. However, after a conversation with her research assistant Isabelle Aquino ‘24, Apgar decided to undertake the process of making the database public. 

With the help of Aquino and another research assistant Camryn Joseph ‘25, Apgar began working on making a public database in Notion. The database now contains over 500 different titles that can be sorted by topics such as age, diagnosis, child age range, and more. 

Apgar feels positive about the decision to make the database public because it can serve as a resource for a wide variety of people who engage with the disability community. For example, after LMU librarian Jamie Hazlitt shared the database with a Westchester parent group, Apgar was contacted by a parent who advocates for children with autism and has a child with disabilities. A researcher from University of Pennsylvania also reached out for help finding memoirs on a specific theme. The existence of the database is also deeply related to Apgar’s own research interests. 

“The academic field of disability studies has historically been rather hostile to parents and caregiver narratives, so there’s a big gap between disability studies and studies of care and caregiving,” said Apgar. “My research now is trying to bridge that gap by thinking about parental caregiving–labor largely done by women–as a path towards a more robust social model of disability.”

This past spring, Aquino and Apgar worked together on a paper on caregiver narratives about disabled children’s menstruation and how narratives of menstrual care can teach us about care labor in the context of disability and dependency. 

Aquino and Joseph have both been pivotal collaborators to Apgar throughout the process of making this large database of narratives a public resource. 

“What I love about my job at LMU is the teacher-scholar model,” said Apgar. “With this project, I’ve truly experienced that high impact kind of learning practice where we’re doing research, but we’re also learning this new skill together.”

Working on the project has also been a valuable learning experience for Aquino and Joseph, whose work on disability studies and women’s and gender studies now impacts their future career goals. Aquino notes that taking a women’s and gender studies class with Apgar and seeing the profound and nuanced ways that she approached the subject convinced her to declare a women’s and gender studies minor.

“Doing research, especially research within the lens of feminist disability studies, has made me more thoughtful, more precise, and a better critical thinker which will obviously serve me in anything I wanna do in my academic and professional endeavors,” said Aquino. “I want to go into law enforcement and now neurodiversity is actually this thing that is being talked about right now [in criminal justice and criminology graduate programs]. There’s a lot of research discussing neurodiversity in the criminal justice system and how we treat people with disabilities.”

Joseph is also a women’s and gender studies minor and hopes to pursue a career in the field of psychedelic therapy.

“Having Dr. Apgar as a professor has been very impactful for me because in women and gender studies, you look at systems as a whole and going into the field of psychology and being a person in power in that field, it’s super important to recognize all the disparities people with disabilities face.” 

For Apgar, working on making the database public with Aquino and Joseph has been gratifying in a multitude of ways. 

“I’m the only person in the world who has this library but it’s been really neat to see Izzy and Camryn get interested in it as well and become a little attached,” said Apgar. “These two are also very exceptional students and bold with their ideas and have made so many suggestions that have made the database better.”