Soon after Jay Pande was diagnosed with cerebral palsy at nine months, his parents quickly started familiarizing themselves with current CP research. His mom, Poonam, and his dad, Girish, are both pharmaceutical scientists, so their attitude toward treatment reflected their clinical backgrounds. “We have always approached the treatment of my CP with a focus on data and evidence, both from my own experience and that of our network of medical providers and other families,” said Jay of his childhood. After trying various interventions, Jay and his family eventually settled on a steady, diversified diet of standard and aquatic physical therapy, as well as an “extensive home program of stretching and exercise.” This approach has been particularly effective in maintaining Jay’s flexibility and walking ability, but Jay and his parents are faithful only to what works: “We continually adjust our treatment strategy as we observe functional limitations or opportunities for improvement,” said Jay.
As Jay made his way through the school system of his home state, North Carolina, he found it increasingly difficult to keep up with the demands typically faced by students. He’d always been academically inclined, especially favoring math and science, but general fatigue, motor delays, and visual processing issues meant that he had additional needs that weren’t being met. Jay pointed to the Closing the Gap Conference, which he and his parents attended in Minnesota in 2010, as a real turning point. “I was able to see examples of assistive technology, and I had a much better idea about what technology I needed to be successful,” said Jay. Just like he and his parents arrived at his therapy regimen, it was a matter of figuring out what Jay needed to thrive, and then fine-tuning from there. The process was far from easy—like so much else in advocacy work, it was nonstop trial and error—but the family’s efforts have allowed Jay to excel.
Jay’s hard work earned him a spot in Duke University’s class of 2020, where his course of study, computer science, was directly influenced by his experiences with CP. “I chose to major in computer science because I was very cognizant of how technology has enabled my academic and professional success,” he said. As a current 2nd-year PhD student in computer science at North Carolina State University, Jay plans to build upon this interest by creating new technology to empower disabled people to be successful in academic settings. When I asked him about his research, he responded, “I’m interested in how natural language processing, and especially automatic speech recognition, can support universal design and level the playing field for people who struggle with writing, typing, or interacting with a computer during learning activities.” It’s hard not to see this research interest as resulting directly from the assistive technologies that aided his early academic pursuits.
Despite a demanding course schedule—computer science is notoriously work-intensive—Jay also managed to also remain active in local disability advocacy communities during his undergraduate years. By the time he was a sophomore at Duke, he was president of the Duke Disability Alliance (DDA), a student organization promoting accessibility and inclusion of people with disabilities in the Duke community. One of his duties included organizing DDA’s annual Disability Pride Week. He also played a key early role in advocating for an on-campus space for students with disabilities. “I feel very proud that I, along with the other students I worked with, made the Duke community a more welcoming place for people with disabilities,” he said. Likewise, Jay is on the advisory committee of the AAAS-sponsored Working Group for Students and Professionals with Disabilities. About his involvement with the organization, Jay said that he’s “excited by the insight the working group continues to provide into how to increase the participation of people with disabilities in Science, Technology, Engineering and Mathematics (STEM).”
Jay has also remained active in the larger CP community, particularly CP Research Network. His family first became involved with the organization after his mom attended a 2017 CP Research Network meeting in Chicago, and since then, Jay has made it a point to attend the CP Research Network webinars and participate in studies. In Spring 2021, he also participated in network’s MENTOR program. “I really appreciate how these experiences have helped me feel connected to other people with CP and have shown me that I am not alone in striving to be as healthy as possible while living a fulfilling life,” said Jay.
When we asked Jay why he values collaborating with the CP Research Network, he talked about the uncertainty he felt regarding how CP would affect his life as he aged. For a long time, CP was thought of as a condition restricted to childhood and adolescence, and the CP Research Network has worked to change that perception. “CPRN is doing great work to improve our collective understanding of CP,” said Jay. “I am hopeful that, in the future, I’ll have less uncertainty about the best ways for me to stay in good health.”
And so it is fitting that, in some sense, Jay’s PhD research will focus on a similar topic: how to improve the lives of people with disabilities. He expects to remain in academia after his PhD and continue researching technological innovations which ensure equitable access to education for people with disabilities. He still has a lot of work to do to make these formative plans a reality, but with young researchers and advocates like Jay, the CP community is in excellent hands.