Did you know that today, October 31st, is the last day of #DwarfismAwarenessMonth? I’m guessing that if you or a family member aren’t one of the estimated 30,000 people in the U.S. (651,700 in the world) with dwarfism, this awareness-raising month has come and gone without your noticing it.
But though the month is coming to a close, I invite you to carve out time to learn more about what life is like for children and adults with dwarfism today. Physical barriers for accessibility (think about the height of toilets and sinks in public restrooms alone) are global and unfortunately, social barriers and stigma still exist. If you put in the hashtag #dwarfismawarenesmonth on twitter, you can find stories about how stigma impacts real people’s lives. Here’s one powerful example, shared by Jack Santy in a series of tweets:
“In the 13 months that I’ve worked at this family-oriented restaurant, this is the SECOND time in that setting alone where a parent has stopped me in the middle of my shift duties to ask me to leave the area because their child was significantly distressed by my presence…”
“MOVING ON from that ridiculousness, I’ll leave y’all with this: If you’re a parent figure or mentor to one or many kids, it is crucial to engage with them in conversations about Disability and etiquette when encountering differences.”
Jack’s experience resonated with me. In 2016, I was excited to share a memoir written about my Great-Uncle Mace Bugen’s amazing life story, The Little Gate-Crasher. Born in 1915 to Jewish immigrants, Mace defied society’s prejudices and expectations for people with dwarfism by becoming a successful businessman and pillar of his community. He also loved photography and framed himself in photos with the most famous athletes, celebrities and politicians of his day. In doing so, Mace was able to take charge of the way others saw him and left an incredible visual legacy of his life and pop culture of a certain era that is now captured in my book.
So I was quite despondent to read in #dwarfismawarenesmonth tweets that social media, while being used to empower many people with dwarfism to share their stories, is also being used as another medium to set people with dwarfism aside and cast them as a species separate from human…I read first person accounts of people who have experienced the humiliation of having pictures and video taken of them, in mockery, while they’re simply out in public living their lives. can you imagine the emotional toll that would take on you or on a loved one? While Uncle Mace was stared and jeered at through his life, I am thankful he never had to deal with this level of dehumanization.
When I was out doing book talks, I was amazed by the number of people who unabashedly told me, an author of a book about my beloved family member’s life, that Little People “scared” them. Really?
It took me a few times to figure out an articulate response to these shameless confessions. What I now say, when I encounter this particular form of prejudice is, “What scares me is when human beings aren’t able to understand and embrace the vast differences that make up our human condition.”
I imagine Uncle Mace winking at me when I say that. I hope to make him proud.
Gabrielle Kaplan-Mayer directs Jewish Learning Venture’s ‘Whole Community Inclusion’ which fosters inclusion of people with disabilities through the Philadelphia Jewish community. She loves writing/editing for “The New Normal.” Her latest book The Little Gate-Crasher is a memoir of her Great-Uncle Mace Bugen, a self-made millionaire and celebrity selfie-artist who was 43 inches tall and was chosen for this year’s Jewish Disability Awareness & Inclusion Month Book Selections. She’s recently shared an ELI Talk on Standing With Families Raising Kids With Disabilities and has released a journal designed for special needs parents.
More from The New Normal here.
