My Great-Grandmother: Discovering A Role Model

51mNG2msqwLMy great-uncle Mace Bugen, my grandmother’s younger brother, grew to be only 43 inches tall and had a hump on his back as a result of achondroplastic dwarfism.

I’ve had the pleasure of getting to know more about Mace’s life story and his incredible photo collection while working on his memoir, The Little Gate Crasher.

What I discovered in my Great-Uncle was an unstoppable spirit who overcame both the challenges of his limited mobility and also society’s prejudices towards people with dwarfism to live an incredible life on his terms. He became a successful business owner, was a fixture in his community, was an amazing uncle to all of his nieces and nephews and pursued his rather unusual hobby of getting his photo taken with the famous celebrities of his day.

What I also discovered while learning more about Mace’s childhood was the role of his mother, my Great-Grandmother, Sarah Sager Bugen. I never met her, but my grandmother told me stories about her frequently—she, like Mace, sounded like an unstoppable force. She was a Russian immigrant, mother of five, who was known for welcoming strangers to her table, packing up all of her kids to go camping with the scouts and working tirelessly in the grocery store that was in the front of the Bugen’s home in between her homemaking chores.

There would have been no way that Sarah was prepared for the news that her son was born with physical differences—Mace was not only small but also had a hump on his back and crooked spine. Doctors predicted that he might not live to age 10.

But Sarah, notably, treated him like her other children. She had expectations for him. In fact, when he had to repeat his senior year of high school, he told his parents that he would prefer to drop out. His father acquiesced, content with the idea that Mace could work in the store. Sarah said no—she didn’t care how long it took him, she expected Mace to graduate from high school.

In my own journey as a mom of a son on the severe end of the autism spectrum, I am often reminded of the need to keep high expectations for him. My son has achieved so many things that are not easy and intuitive for him—learning to use a communication device on his ipad, work on academic and vocational skills at a school that pushes him to exceed, travel and go on social outings with our family.

I think often of how much support I have—a circle of parents of children raising autism, friends I’ve made in person and online. But Sarah had none of that—she was the only parent she knew who had a son like Mace.

Sarah also lived in a time in which it was socially acceptable to mock people with disabilities—Mace was taunted by kids and even as a successful adult faced jeers, stares and laughter. And yet his sense of self-worth and self-confidence never faltered and I give much credit to that to his mother.

My son’s disability is totally different from Mace’s but I gain strength from my great-grandmother’s loving example. I hope that I have given and will continue to give that sense of worth to my dear son.

Read more about Mace’s antics in The Little Gate Crasher—enjoy!

GKM4Gabrielle Kaplan-mayer is a writer and educator based in Philadelphia. She is pleased to share the release of The Little Gate Crasher, a memoir of my truly extraordinary Great Uncle, Mace Bugen. Other recent books include The Creative Jewish Wedding Book and The Kitchen Classroom. Gabby is a featured blogger for Newsworks Philly Parenting and writes for and edits The New Normal: Blogging Disability. As director of “Whole Community Inclusion” at Jewish Learning Venture, she leads disability awareness training across the Philadelphia Jewish Community.