Amy Lutz is a Ph.D. candidate in the History and Sociology of Science Department in the School of Arts & Sciences. A writer who earned her bachelor’s in English and psychology from Penn and a master’s in fiction writing and literature from Indiana University, Lutz is also the mother of five children. These three identities—scholar, writer, mother—coalesce in Lutz’s second book, “We Walk: Life with Severe Autism.”
The other half of the “we” in this book is Lutz’s son Jonah, 21, her eldest child who loves pretzels and rollercoasters, walking instead of running, Sesame Street, and Costco samples. Lutz’s essays dart from present day to Jonah’s early childhood, exploring the meaning of faith for someone who doesn’t understand the concept of God and the meaning of community when it shuns the vulnerable. All of her essays center around fundamental questions: What kind of society do we want to build and dwell in? What does it mean to care for another? What does it mean to be human?
Lutz is currently in her fourth year of doctoral studies, with Beth Linker, the Samuel H. Preston Endowed Term Associate Professor, as an advisor. Lutz was a rare applicant, Linker says. Lutz came to Penn as a published author, and her focus did not waver from the start of her first class to the start of her dissertation. “As someone who has been doing disability studies for quite some time, I found her writing provocative,” says Linker. “This was a perspective that has not been talked about.”
Lutz is a parent-advocate for children and adults with severe intellectual disabilities. As the disability-movement pendulum has swung towards self-advocacy, it has left in its wake those who are unable to self-advocate, Linker says. The field of disability studies shows that the latter part of the 20th century was about dismantling institutions, many of which were harmful to the people they were designed to serve. Yet the need for services remains, and in many cases this responsibility has been either forced back onto individual families and caregivers or onto prisons, which house a disproportional number of people with intellectual disabilities and psychiatric disorders, Linker says.
In her book, she pushes severe autism from the shadows into the public square, asking, “What about Jonah? What does a fulfilling life look like for an adult with severe autism? How can society care for this population?”
“To me, as someone interested in fostering civic debate, I was excited to get her into the program, so her voice could be heard in academic circles,” Linker says. “When there’s a touchy subject, that’s precisely when we need to have really good scholarship to promote dialogue.”
Penn Today spoke with Lutz about her new career, tribalism, and what it means to be human.