If you lived in the Lehigh Valley of Pennsylvania between 1940 and 1980, you likely would have seen my great-uncle, Moishe Morris “Mace” Bugen, driving his open-roofed Jeep painted with blue and white stars and a sign that read “Hadassah” across the front window. Many thought of Mace as a one-man parade of Jewish pride: Pedestrians would call out “Hey Macey” when they saw him coming, and he would wave back with an official air.
Hadassah, his beloved Jeep, was equipped with custom pedals that reached his feet. Mace, my grandmother’s younger brother, was born in 1915 with achondroplasia, a bone-growth disorder that causes the most common form of dwarfism. His head grew normally while his height topped out at 43 inches. Mace had a hump on his back and a crooked spine that deteriorated as he aged. However, what made Mace memorable were not his physical characteristics but his resilience in the face of society’s prejudices and his oversized chutzpah.
In examining Mace’s life for my recent book about him, The Little Gate-Crasher: The Life and Photos of Mace Bugen, I was reminded how far the United States has come in advancing the rights of people with disabilities. The Americans with Disabilities Act was passed in 1990, which, among its provisions, requires that public spaces are accessible for people with mobility issues. When Mace drove to events, he often had to park on the lawn close to an entrance because there were no designated handicapped spaces.
As the mother of a child with cognitive disabilities — my 14-year-old son, George, is on the autism spectrum — I am keenly aware that families still need to fight for their children’s access to education, therapy and inclusion in the community. I have newfound appreciation for how my great-grandparents made sure that even if the world outside scorned Mace, home was a place of unconditional love. This was quite unusual for that era, when children with differences were typically sent