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” and for WHYY’s newsworks. 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.
Maxine Rosaler. Courtesy of Ann Slavit
Writer Maxine Rosaler has been writing fiction and personal essays for many years; her stories and essays have been published in literary quarterlies such as The Southern Review, Glimmer Train,Witness, Fifth Wednesday, Green Mountains Review and The Baltimore Review.
Now Rosaler is the author of Queen For A Day (Delphinum Books), a novel in stories about mothers raising children with autism.
In a review of the book, New York Parentingsays, “It’s about time someone wrote a humorous novel that shines a light on the plight of parents who are coping with unbearable stress and impossible challenges while raising their amazing, special-needs kids.”
New Normal Editor Gabrielle Kaplan-Mayer spoke with Rosaler about the inspiration for and reaction to “Queen For A Day”(Delphinium).
GKM: Before we talk about the book, can you share about your background as a mom—and how that inspired your writing?
MR: Although it was clear there was something very wrong with my son, I couldn’t face it, and it wasn’t until he was 4 1/2 that I finally got him tested. He received various diagnoses. Ultimately the one that made the most sense was autism. I was in denial before his diagnosis, and I was in denial for a long time after his diagnosis as well. It wasn’t until Benjy was 13 that it began to sink it with me that that cure I had been waiting for was never going to happen.
When I finally had the time to get back to work, I knew that I had to write about this ordeal that had dominated my life for so long. I had a lot of false starts before I could figure out how to approach this material. It’s not an easy thing to write about. It’s so painful.
Benjy is now 26 years old. He is majoring in chemistry at City College, which he attends with people I hire to work with him. He lives in his own apartment, which is a seven-minute walk away from what he calls his “original apartment.” He has a “neurotypical” roommate, who is there to keep him company and keep him safe. Because of Self-Direction, he has been able to live a life that is both happy and fulfilling.
GKM: What have you learned from the experience of raising Benjy?
MR: When you have a child who needs lifelong help, the world gets divided into good and bad: you see how good people can be and how bad they can be. You find yourself constantly reeling from the world’s cruelty. That cruelty has been one of the most difficult things for me to deal with. On the other hand, I have been amazed by how good some people are. The goodness of people totally zaps me, and sometimes I just want to bury myself in the warmth of their goodness.
GKM: What inspired you to write Queen For A Day with stories featuring perspectives of different moms raising kids with autism?
MR: What the characters in my book have in common is that they are all very imperfect women. I hate it when mothers of handicapped children are portrayed as saints. We are all ultimately who we are. Being cast in the role of “special needs mother” does not automatically turn us into saints or martyrs.
As a writer, and as a person, I’ve always been attracted to people as characters. The main character in Queen for a Day is Mimi, whose experience very much mirrors my own. My book follows the evolution of Mimi’s grief…to not exactly acceptance, but to sort of acceptance. The other mothers have stories of their own that I integrated with Mimi’s story, and sometimes I have them looking at Mimi, always from a rather negative perspective. As a writer, I get a kick out of making fun of myself.
GKM: What do you hope readers will take away from Queen For Day?
MR: Other mothers have told me how relieved they are to have the truth of their experiences not sugar-coated, but told in all their gory glory.
I respect people who have been able to find spiritual gratification in the experience of having a child with autism–or any disability. And I think that for most of us, there has to be that element in order to survive. But the truth is, it’s really brutal.
One mother told me she keeps on buying copies of my book to give away to people. No one knew what autism was when her son, who is in his 50s now, was diagnosed. She has told me that reading my book released her from feeling guilty about her bad feelings. Imagine that! Apparently many mothers of children with disabilities feel ashamed of their bad feelings and feel that they have to keep them a secret. I think that’s a problem for everyone, really, isn’t it?
I don’t think that the mothers of children with disabilities have cornered the market on suffering and I think my book is for any woman who wants to read a realistic account of how emotionally fraught the experience of being a mother can be. That’s not to say that I don’t talk about love as well. For me, love has always reigned supreme. But that doesn’t mean that bad feelings don’t also exist. As far the black humor is concerned: It can be deadly to write about the kind of grief I write about in Queen for a Day without infusing it with irony. As a writer, and as a person, as well, I have always embraced the darkness and the light. I think that the fearlessness of comedy can be the ultimate expression of the darkness that exists in all of us.
You can join Maxine on 1/29 for a webinar sponsored by JOFA. Click here for more information.