Seeing Past a Child's Disability: One Parent's View of Universal Design for Learning : Articles: Publications: Theory & Research: Universal Design for Learning: CAST

When Hope Borghi's baby daughter Kathryn was diagnosed with ataxic, hypotonic cerebral palsy and epilepsy, she refused to accept the doctor's bleak predictions for Kathryn's future. From the day Kathryn was born, Hope filled her environment with love, music, excitement, and visual and motor stimulation. "Without intending to do so," she says, "I had already begun to provide the stimulation that enabled Kathryn to reroute her mental energy to different areas of her brain." This way of responding, Hope believes, proved crucial to her daughter's later development.

"In the early '80s, I discovered that the computer was the only answer as an alternative means of expression, so I had Kathryn in a high chair using 'Sticky Bear Numbers' at age three on an Apple IIc." Kathryn attended an elementary school for the orthopedically challenged for 2 � years, where she received intensive physical therapy, but Hope was adamant about wanting her daughter to be educated in a general education classroom. She pushed successfully to get Kathryn enrolled in public school in the Borghis' hometown of Upper Arlington, Ohio--unheard of at the time for a child with moderate cerebral palsy.

Eventually, Hope's belief in the power of the computer to help her daughter led her to CAST, formerly known as the Center for Applied Special Technology, in Peabody, Mass. As if in answer to a prayer, Hope saw an ad for a CAST/Harvard Graduate School of Education "New Tools" summer institute and registered immediately by overnight mail. "Kathryn's epilepsy in those days was very debilitating. My husband, Peter, committed time off so I could attend." That same summer, the Borghis enrolled Kathryn and her younger sister, Sarah, in CAST's annual one-week computer camp for children with disabilities and their siblings.

Hope's experience at CAST that summer "strengthened my resolve and gave me the additional skills I needed to better educate and advocate for Kathryn. One of the occupational therapists at CAST did an evaluation, which I brought back to Ohio for implementation in Kathryn's classroom in the 1990-91 school year. From Kathryn's positive experience at CAST's summer course, I was motivated to work harder to get her teachers involved."

Without realizing it, Hope had begun practicing--and advocating for-- Universal Design for Learning (UDL), a promising new approach to education that has gained momentum since the 1997 IDEA (Individuals with Disabilities Education Act) Amendments mandating access to the general curriculum for students with disabilities. The UDL approach uses the flexibility of computers and the Internet to fashion software tools, educational content and instructional approaches that support individualized learning. These tools and approaches provide alternatives for students with wide disparities in their abilities, backgrounds and learning styles. For example, textbooks that are provided in electronic format can be used with text-to-speech software programs and screen readers, making the curriculum accessible to students with learning differences such as physical challenges, low vision or blindness, learning disabilities, and limited proficiency in English.

Thanks to Hope's advocacy, the four special needs tutors in Kathryn's elementary school were given computers and software along with training in how to use them. "Eventually, Kathryn's inclusion in a mainstream classroom had a substantial impact," recalls Hope. "At each new level, obstacles to learning occurred. Kathryn and I met them head on and helped the staff and administration to hear what we were saying, and what CAST helped us to learn. Luckily, with vigilance and persistence, Kathryn succeeded."

In 1995, unable to deliver a speech as did her classmates, Kathryn gave the first multimedia presentation in her school, using HyperStudio�. Though she was unable to take notes in class, Kathryn earned A's in seventh-grade biology and made the honor roll all through middle school. In art class, her teacher set her up at a light table to trace pictures while the other students in the class drew free hand. Kathryn's drawing required endless repositioning of her pencil because of the involuntary movements caused by her cerebral palsy, but she persevered. The artwork she produced in the class went on to win prizes in national and international competitions sponsored by Very Special Arts.

During those years, Hope published three books about Kathryn and another book about a brother who is hearing impaired. "While raising Kathryn, I hoped that I could change attitudes through literature. I wanted to [write] real-life inclusion stories where the emphasis is on the child, not on the disability." Hope's story, Down the Aisle, for example, focuses on Kathryn's unique experiences as a junior bridesmaid in a wedding. Kathryn read all of her mother's books before publication, giving her reactions and advice.

In December, 1996, Kathryn died unexpectedly at the age of fifteen from a viral illness that was complicated by her physical disabilities. "I miss her more than anything in life," Hope says today. "I learned more about life, love, happiness, true joy while sharing her life and raising her. She never gave up. Her innate humor and ability to share her joy and happiness taught me how to teach."

Today, Hope continues on the path she chose to follow while Kathryn was alive, advocating passionately for the inclusion of students with disabilities in general education classrooms. The Borghis have started an endowment fund in Kathryn's memory to benefit children with disabilities, and Hope has established OpenMinds� Inc., a company that publishes fiction based on true stories of inclusion.

While all parents of children with disabilities will not necessarily write books, start publishing ventures, or become activists in disabilities causes, most-given the barriers inherent in the traditional print-based general education curriculum-want to know how they can better advocate for their kids in inclusive classroom settings. Universal Design for Learning offers a promising place to start.

First, if the school curriculum is inclusive, flexible, and accessible, parents can be more secure in knowing that their children's educational needs are being met even though they may be learning differently from their peers. Second, if the curriculum provides alternatives, it will be easier for parents to advocate for the use of these alternatives with their own children. In fact, a curriculum that incorporates UDL features can serve as a framework for parents' discussions with teachers, guidance counselors and academic department heads about how the child's learning needs are or are not being met. Third, UDL offers the possibility that assessments will be more flexible and that grading will not be based solely on test and quiz scores. Finally, by facilitating communication between school and home, the UDL model actively encourages parent participation in their children's academic development.

In Concord, N.H., a district-wide project that converts curriculum to digital format relies heavily on parent volunteers to do the text and image scanning necessary to prepare UDL materials for students with disabilities in the schools. The project has been a key vehicle for getting parents excited about the UDL approach, even those of students without special needs. "Parents of students with disabilities have gotten involved [through the project] or have been catalysts for getting their friends or other parents from the school involved in these efforts," observes Donna Palley, the special education coordinator who heads the project.

While Concord is successfully implementing UDL system-wide, many school districts have yet to hear about Universal Design for Learning or have mistaken notions about what it is. Again, parents can be the driving force to get the message across. "Don't underestimate the power of knowledgeable parents to put tension on the system," says Palley. As her 15 years in the Concord Schools have shown her, and Hope Borghi's story so eloquently illustrates, big changes often start with individual students and their parents. "Every special education coordinator in the universe knows parents who have pushed their school district to improve or to change or to have something happen," says Palley, citing one parent of a student with a disability who is not only disabled herself but is also a disabilities rights attorney. "You can imagine that that parent is someone who keeps me on my toes."

Hope Borghi speaks from her own experience in dealing with schools, counseling parents to "try to help them see the benefits of UDL, not just make demands."

Why should parents push for UDL in schools? Borghi believes that Universal Design for Learning is vital not only to the academic progress of students with disabilities but to their social development as well. "If Kathryn had tried to represent what she knew without a computer or Universal Design for Learning, she would have appeared to be much less than the person she was. Universal Design for Learning allowed her to put her best foot forward rather than her worst and helped her teachers and the other kids to see past her disability to who she really was."

Read an earlier article about Hope Borghi in the on-line version of the CAST newsletter, Interfaces, Fall 1997.