© 2008, Exceptional Parent
“Brilliant, searing, insightful — important.” That’s what critics and experts have called the writings of Sarah Stup.
A young woman with autism from Frederick, Maryland, Sarah made a choice to forgo traditional employment options for people with disabilities and to pursue the seemingly improbable option of becoming an author.
Becoming a successful writer can be a dubious prospect for people without disabilities. And yet with talent, passion, and collaboration, Sarah, 24, has managed to pave a way for herself as a poet, essayist, children’s author, and advocate. She has been profiled in print and on TV and is the recipient of advocacy awards.
Sarah’s silent yet powerful voice has begun to change the way teens with developmental disabilities look toward the future and employment. Sarah says that her speaking voice is broken but that on paper her words have broken barriers and carved out new pathways for herself and students who follow in her footsteps.
Sarah is a soft, gentle soul. When she greets people, she reaches out, and after a quick hand to hand connection, takes a delicate curtsy. She puts her hand to her nose taking in the person’s aroma. “Smells and sounds stay with me long after the person is gone. It is part of my autism,” Sarah explains in her writing.
Autism has a significant impact on Sarah’s ability to control her body. She rarely speaks using her voice. She is ritualistic. When she walks into a room, she must find the light switch and turn the lights on and off several times. Her movements can be uncontrolled without the direct intervention of another person. Sarah needs support whether her task at hand is to take a walk, get a cup of coffee at Starbucks, or sit down in her home office to type. “My body edits not,” she types.
Sarah’s writing provides a fascinating insight into autism. She opens up a mysterious world, a world that many parents long to break into and understand. “A naughty beast called autism lives inside, protecting me from seeing and hearing too much. Autism acts rude, and people hate rudeness,” Sarah muses in her book, Are Your Eyes Listening? Collected Works.
Her mission as a writer is to entertain and to advocate. She leaped into advocacy as a young child. Until she was eight years old, Sarah attended a school for children with disabilities. Around that time, she began to communicate by typing. Before long, she used her typed words to make her wishes clear.
“Shortly after Sarah began communicating by typing, one of the first things she said was that she wanted to go to a regular school like her older sister, Janna,” says Judy Stup, Sarah’s mom. There is a humble pride in Judy’s voice as she talks about her family’s journey and her daughter’s accomplishments.
With one finger and a lot of patience, Sarah painstakingly communicates and creates her stories using a portable communication device. “She occasionally uses a computer or laptop, but like other authors who may have a favorite pen, Sarah prefers her outdated typing device,” Judy says.
Sarah’s decision to become a writer was not greeted with overwhelming approval. Like many students with disabilities, Sarah was encouraged by well-meaning advisers to choose a more “sensible” career path. There were philosophical disagreements among educators, service providers, and family members that needed to be addressed at the individualized education program (IEP) table.
“Sarah refers to the barriers as ‘red stop signs on paths that could have crossed.’ The Arc has helped us through many of the barriers along the way,” Judy says.
Support coordinators from The Arc of Frederick County served as an ally to the Stup family as they approached many of the “stop signs” together. The Arc provided advocacy and supported Sarah and her family at IEP meetings.
Karla Robeson, a senior support coordinator with The Arc, says Sarah expressed an interest in writing at a young age. She created the characters that would later be used in her children’s book Do-si-Do with Autism when she was just 10. “Not only did she have an interest, but a true talent as well,” Karla says.
Through a cooperative effort, Sarah’s family, Frederick County public schools, and The Arc developed innovative supports to help Sarah pursue her interest in creative writing. “Sarah’s combination of skills and needs led to a whole new perspective in program development,” Karla says. “Part of advocacy is helping systems move forward and grow. The Arc was able to collaborate with our school system to leave a mark that continues to benefit transitioning students.”
The Arc created a writing internship so Sarah would have time to solely devote herself to exploration and honing her craft. The agency provided office space and a writing mentor, and helped Sarah make connections to publish her work. The school system provided one-on-one staff Sarah needed throughout her day.
The partnership proved to be successful. Within a year, Sarah had published essays in several regional publications, including magazines, newsletters, and a newspaper, and her poetry was featured and displayed at a local coffee shop. Additionally, Sarah traveled to the state capital and presented written testimony opposing a bill that would have encouraged people to access respite services in state institutions instead of in the community.
Sarah’s voice gained a strong state-wide following. In 2004, she was named The Arc of Maryland Self-Advocate of the Year and received the Frances and Lease Bussard Award for Self-Advocacy. Upon graduation, she accessed state funding and business grants to publish her first book, Do-si-Do with Autism.
In the book, Sarah introduces readers to Taylor the Turtle and his friends. Taylor has autism and uses his shell to protect himself from the world. Do-si-Do teaches children the importance of seeing each others’ similarities while respecting each others’ differences. The book is in its fifth printing. Her Taylor the Turtle Fun Pack CD based on Do-si-Do with Autism uses interactive lessons to complement the book.
Beth Mende Conny, owner and founder of WriteDirections.com, has worked along with The Arc to help Sarah gear her portfolio toward different audiences. “The imagery in Sarah’s work is particularly moving,” Beth says. “I never saw Sarah as a person with a disability who writes. I see her as a strong writer with a gift.”
Beth says she has grown as a result of their collaborations. “This is one of the most incredible projects I’ve worked on,” she says. “I’ve learned how a support system can make things happen. The network of advocacy is impressive.”
As part of Sarah’s desire to serve as an advocate, she and The Arc developed a training curriculum called Hope’s Ingredients for transitioning students. Through a person-directed approach, the training aims to ensure that students with developmental disabilities have the opportunity to incorporate their hopes and dreams into their plans for the future. Many students with disabilities have been told, subtly or overtly, that their hopes and dreams are silly or that they cannot accomplish things because of their disabilities.
Hope’s Ingredients encourages students to look toward the future without constrictions. The training is intended to help students identify career choices as well as the support they need to make those choices a reality. It is opening up possibilities for students with disabilities to secure jobs with competitive wages in career fields that interest them. Sarah’s silent voice echoes in the background of each student’s accomplishments.
Tom Oden is one such student. After taking part in Sarah’s Hope’s Ingredients curriculum, Tom identified computer work as his area of interest. Staff from The Arc and Frederick County public schools supported Tom to interview and land a job assembling computers at Best Buy. Tom has held his job for over two years. He is a member of Best Buy’s Geek Squad and a valued employee.
“Sarah’s Hope’s Ingredients training helps people focus on their passions,” says Penny Jurchak, a teacher with Frederick County Public Schools. “Prior to the training, Tom was working in lawn service – not necessarily because he wanted to, but because it was available. I don’t know if Tom would have reached the kind of job he did without The Arc partnering with us,” Penny says.
Building on her success as an author and advocate, Sarah published Are Your Eyes Listening? Collected Works in 2007. The compilation of poetry and essays candidly and poignantly convey the sights, sounds, and experiences of autism.
“Her wrenching language reveals ‘the beast’ that is autism but also the special gifts it imparts, gifts that make her the unique person she is,” Beth Mende Conny says. “This book is about more than autism, however. Ultimately, it is a book about life.”
Sarah’s career continues to blossom. This year, she has published the first of Sarah’s Keepsake Collection, a line of gift books that reveal the essence of life, love, family, nature, and autism. Additionally, she is working on a novel for middle-school students tentatively titled Paul’s Beast.
Bringing her autism with her has been key to Sarah’s hopes and dreams becoming reality. Embracing it. Not hiding it. Not being ashamed of it. Realizing that success can be found within autism.
Sarah wants other students to be afforded the dignity of bringing their disabilities with them. And she wants the world to know about her autism.
“Autism is not about good or bad manners. Autism is part of us, a shield that we need and not a manner we are choosing. We need to bring autism into your spaces without your being sad,” Sarah says.
Aaron Notarianni Stephens is an assistant director with The Arc of Frederick County (Update: currently Deputy Director of The Arc of Frederick County). Aaron served as a writing mentor to Sarah since 2003. He can be reached at firstname.lastname@example.org.