Meet D.A. Charles, a passionate advocate for disability representation and authentic storytelling. Growing up with a paraplegic mother fueled D.A.’s commitment to challenging stereotypes and fostering positive narratives through writing. From navigating challenges in the publishing industry to making a meaningful impact in readers’ lives, D.A. shares insights into the journey of crafting “The Roll Models Saga” and the ongoing quest for disability visibility in media and literature.
Can you share a bit about your personal journey growing up with a paraplegic mother and how it influenced your writing and advocacy for disability representation?
I was born in 1965, my mom was an elementary school teacher, working in a school that had “ungraded classrooms,” which, at the time, was fairly progressive in regard to inclusive learning. At the time I was born, a female teacher had to begin her maternity leave before she began to show. My mom chose to be a stay-at-home mom until after my younger sister started school ten years later, by that time, however, her Multiple Sclerosis, which had begun in 1953, had progressed to a point where she could no longer write legibly or stand for long periods of time. Ironically, the same school she once viewed as progressive, felt she would not be able to meet the standards expected to perform her teaching duties and as a result of low expectations and preconceived notions, she was never permitted to return to the workforce.
Mom longed to teach, and while she never returned to a classroom, she nurtured my love of reading and writing, encouraged my creative pursuits, which led to fulfilling the lifelong dream of publishing my writing projects.
My mom was my Roll Model. She lived with MS for sixty-one years, and she did it with pride and dignity. Because of her medical situation, I embarked on a lifelong career in Home and Community-based Care, Advocacy and providing Information and Referrals to goods, services and funding opportunities for individuals with disabilities in our community.
I had the pleasure of personally caring for Mom, in her golden years, moving her into my home after my father passed. We took grand adventures, but we had quiet days, too—Mom loved a good movie, but she was discouraged by the lack of characters she could relate to. Existing representation was rarely a starring role, and the characters with disabilities that did exist were portrayed by non-disabled characters. We decided to make our own contribution to the disability narrative by writing a story of our own and the first draft of The Roll Models Saga was born.
What were some of the biggest challenges you faced when starting your writing project, “The Roll Models Saga,” and how did you overcome them?
The Roll Models Saga was originally a work of derivative fiction, it was posted one chapter at a time online, garnering over four thousand reviews and a following of over fourteen hundred readers. One challenge I faced in the beginning was trying (and often failing) to maintain a consistent writing schedule while caring for Mom as she aged with MS.
The greatest challenge, however, came at the end. I posted the final chapter shortly before my mom’s passing. We had made the decision, after much reader prompting, to publish the story, but one of my readers suggested that it would probably be more marketable if I took out all the “disability stuff” and just published it as a romance. That little bit of negativity filled me with imposter syndrome and made me doubt the decision to publish my work.
I realized that if a reader was making this suggestion, an editor or agent might be thinking along the same vein and decide to dissect it, in an attempt to tone down the disabilities. The fear of losing control of my project deterred me from attempting to publish for a number of years.
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What lessons have you learned about the importance of authentic representation and positive narratives for the disability community through your work?
I believe it’s the importance of authentic representation and positive narratives that were a catalyst for this project, so I’ll share a little more about how it came to be. I hope that’s okay.
I have a lived experience in the disability population—as a result of my mom’s involvement in the local chapter of The National Multiple Sclerosis Society and our local MS self-help and advocacy group, most of the people I interacted with growing up had disabilities.
It was my mom’s disappointment of not “seeing anyone like me,” that made me realize that the best way to make change was the same as any other advocacy initiative–we needed to take an active role in representing the disability population. Incidentally, my female protagonist is a person with Multiple Sclerosis.
I have spent my entire career advocating with and providing direct care for some of the most empowering and influential individuals with disabilities, and I’m a neurodiverse author with a number of my own diagnoses, so authentic representation has always been important to me and something I strive to support.
One of those empowering individuals is my lifelong friend, Cindy—fresh out of college and bound for grad school, she was struck by a motor vehicle in her power wheelchair. I began providing Cindy with direct care services straight out of the hospital and continue to work with her now, more than thirty years later.
Her legal case was dropped by her attorney at the eleventh hour because our state’s outdated motor vehicle code defined her power chair as a motor vehicle—thus because she was traveling against traffic, as a pedestrian, she was at fault for the accident.
Cindy made change by introducing legislation that changed the motor vehicle definition. After several years of hard work, the bill was passed in the state of Pennsylvania, designating an electric mobility aid as a pedestrian.
Wanting to turn her experience into something positive, she graciously allowed me to use her journey for my male main character’s accident in book two. I released the book right after the thirty-second anniversary of her accident. Cindy provided photos of the demolished wheelchair she nearly died in, and we used them in our cover design.
I dedicated The Roll Models Saga to Cindy, in recognition of her advocacy work.
Could you describe a particularly inspiring moment or story from your writing journey that has impacted you deeply?
My friend, Alec Frazier, was incredibly invested in my project. He became a published author through a small, but wonderful imprint in New York City that publishes creative fiction from artists with specific life experiences.
After Alec’s book was published, he was determined that The Roll Models Saga would be published, too. I was introduced to Jd Michaels and StoriesAboutUs.org through Alec. Without his persistence, I don’t know if The Roll Models Saga would have been published.
Alec was autistic and was a passionate advocate for the disability population. His good works were recognized by the United States Senate and a tribute recognizing his contribution to humankind can be found in the Congressional Record.
Sadly, Alec passed just a year after my first book was published, but I’m determined to keep his memory alive by continuing to represent us by writing stories that matter.
What advice would you give to aspiring writers who are passionate about advocating for underrepresented communities through their work?
Submit your work to Stories About Us. Seriously. I had the most incredible experience with people who understood how important disability representation in modern media is. My project was treated with respect and the support was something I never imagined. Upcoming seasons of Stories About Us will represent more underrepresented communities. Through Stories About Us, I became involved with Lights! Cameras! Access!, an organization that helps entertainment professionals with disabilities network and learn and create. It’s such a supportive community of individuals helping one another realize their goal of working in the entertainment industry.
If you have a story to tell, do whatever is in your power to tell it, through whatever medium you thrive in. Find a supportive community that will help you build confidence and empower you. Don’t ever give up!
How do you balance your writing career with other aspects of your life, including managing your disability and personal well-being?
I have an unhealthy addiction to caffeine. I drink coffee or tea from the time I wake up, until I crawl into bed. I could not function without it. Carving out time for my writing career is so hard! I work full-time manning the front desk in a busy medical office. Staying organized and remaining on task is a constant challenge at home and at work. It’s easy to get distracted. I devote my lunch break to working on social media; at home, I try to write or edit. My daughter is my social media guru/marketing manager. She schedules all my author activities and assists with mailings, etc. I once, naively, assumed that authors just wrote books. Being an indie author involves so much more than writing.
What strategies have you found most effective in raising awareness about disability representation in media and literature?
Start the conversation. Keep the narrative present. We need to keep telling our stories because there are so many people who want to see themselves represented.
Have you encountered any misconceptions or stereotypes about disabilities in your work, and how have you addressed them?
The Roll Models Saga celebrates disability culture, pride and the Independent Living Movement. While this is a work of fiction, individuals and events from disability culture are historically accurate. Events like the Olmstead Decision and the American’s with Disabilities Act and CASA—individuals like Ed Roberts, Bob Kafka and Justin Dart are presented in a way to make people aware of our culture. We also wanted to raise awareness, bash some stereotypes and challenge low expectations with enlightenment that people with disabilities have careers, own businesses, raise families. We tried to introduce information without being preachy, but rather in a manner that would make readers who aren’t aware interested in learning. The Roll Models Saga is about disability visibility, too. My mom lived in a time when people with disabilities stayed at home, kids with disabilities were sent to facilities referred to as “schools”, students weren’t mainstreamed. The Roll Models Saga features a number of characters who have disabilities, living proudly and fully, at work and at play.
Can you share a story of a reader or community member whose life was positively impacted by your writing and advocacy efforts?
When I was posting the story online, I became close with a lot of my readers. Hundreds of people, both disabled and not. Some chapters of the story address barriers faced by individuals with disabilities that the general public don’t typically encounter such as accessible transportation, housing, and funding for medical equipment.
Through the platform of my story, and using my Information and Referral skills, I was able to assist one reader to acquire funding through an access grant to make her bathroom accessible and to bring her electrical and plumbing up to codes.
Another reader had a friend who had been paralyzed in an accident nearly identical to the one my male main character was injured in. The gentleman was experiencing decubitus ulcers and having difficulty breathing through the story, he became interested in the benefits of standing wheelchairs. When he requested information, I was able to assist his family in identifying and procuring the proper documentation to justify his need for a motorized wheelchair that would allow him to stand independently. I assisted them in accessing a funding program that paid for the chair, so he had no out of pocket expense.
Another reader, who does not have a disability, was remodeling a home that her family had purchased and after reading about Concrete Change and visitable homes in my story, she became involved with the program and made the first floor of her home accessible.
Looking ahead, what are your goals and aspirations for “The Roll Models Saga” and your broader advocacy work in the future?
Ultimately, the most important goal is completing the saga.
I am currently applying for grant funding that will help me produce the saga in audiobook format. My friend and writing partner, Sherry Gomes is blind. She retired from a job providing support for assistive technology for the blind. Sherry spent her workday listening to computerized voices and is an avid reader of audiobooks read by live, human, voices. Ignorantly, I didn’t understand the importance of an audiobook version of a story when there were accessible means of reading a book such as Alexa or text to speech, until Sherry passionately explained the difference.
I became involved with Lights! Cameras! Access! In hopes of bringing The Roll Models Saga to the entertainment industry. I continue to work towards that goal. I think the Roll Models Saga would be a wonderful television series and I think it could bring disability visibility into millions of homes. This story is all about changing perceptions and hopefully making people who are ignorant more sensitive. If we don’t know something we’re saying is hurtful, we’re going to keep using those words. If we don’t understand disability etiquette, we’re going to keep being insensitive.
I am committed to representing us, authentically, by writing stories that matter.
I have so many more stories to tell.
http://www.linktr.ee/dacharlesauthor
