Dan Thompson: The Story of an Accessibility Ninja

  By Ben Rubin   12.15.13

Sitting across from Dan in the cafeteria, he describes his battles this semester with self-righteous professors and unreliable colleagues in his student job. His slouch, along with the dark circles around his eyes are par for the course during midterms at the Rochester Institute of Technology (RIT), and nothing a little caffeine can't fix. In the final year of his business management degree, Dan talks about his Spring and Summer plans; a tight schedule that leaves little to chance. Looking down at his phone, he reminds me of his next appointment. We stand and assemble ourselves; his shoulder bag considerably heavier than mine. As we go our separate ways, Dan rechecks his phone, as does every other student walking down the hall ahead of him. Yet unlike the others, Dan is an accessibility ninja of the highest caliber, with a relationship to documentation unlike anyone I have ever met.

Photo by Tammy Bixler
As is often the case, Dan’s adaptability grew from necessity after enduring an unexpectedly challenging childhood. As a 6 year old, his life was flipped upside down when doctors discovered a medulloblastoma in his brain; a highly malignant tumor in his cerebellum that had grown onto his brainstem. With little time to waste, he underwent more than 13 hours of surgery, followed by 8 weeks of radiation and a year and a half of intense chemotherapy. Although treatable, less than 50% of patients experience long-term control of the disease, so vigilance was critical. While his peers took sick days for the chicken pox, Dan continued to attend school all through his treatment. At times he would go to class in the mornings, followed by blood transfusions in the afternoon. With a Broviac catheter deep in his chest pumping chemotherapy to his heart, he remembers making dunks with a nerf basketball in the hospital. Dan had an infallible spirit throughout the entire ordeal - he never complained of sickness and even began taking his own blood samples. When he was at last clear of the cancer, he had gone through 33 units of blood; over 3 times the amount of blood in an average adult.

 Although Dan beat the odds, the treatment that saved his life would leave a lasting impact. He was able to regain his eyesight 6 weeks after the surgery, but his hearing was permanently altered by the chemotherapy. In the 5th grade, he had both of his eardrums reconstructed, which continues to serve him well today. At 12 years old, he had a close call with skin mutations bordering on melanoma that required another surgery. Throughout high school, he experienced several lingering results of the treatment, including microfractures in his spine and a benign tumor in his jaw.

Yet, perhaps more significant was how the treatment impacted the way Dan’s brain could process information. While he is often able to recognize letters and words, he doesn’t seem to store the syntax of written language in his long-term memory in a traditional way. He remembers words as shapes, creating individual icons by tracing their outlines in what Dan refers to as his ‘bubble-format’. With over a million words floating around in the English language (many of which share a similar profile), it is easy to imagine how laborious and fallible this process would be. In terms of grammar, guesswork is also at play in Dan’s writing. Although he can easily copy down notes, recalling the context later from his own notes poses the same challenges as reading typed text written by a stranger.

Throughout his secondary schooling, Dan relied on spoken language to read; both through a one-on-one aid during class and various voice-to text/text-to-voice applications on his laptop. Rather than perseverating over his deficits, Dan’s high school experience was marked by success as he built upon his strengths. Doctors had been convinced that his Math comprehension would suffer due to the prolonged treatment, but Dan excelled with numbers and had an early flair for finance. He found an affinity with the great outdoors after joining the Boy Scouts, where he discovered self-reliance and thrived on experience-based learning. He had no trouble reading visual maps for orienteering, or understanding the meaning behind the symbolic merit badges earned for completing achievements. As a junior in high school, Dan became an Eagle Scout with more than twice the required merit badges needed.

I met Dan in Dr. Larry Quinsland's science lab during his first quarter at RIT. Although the school offers an array of support services for deaf and hard of hearing students, Dan’s case was an anomaly and they weren’t quite sure what they could do for him. For several years prior to meeting Dan, I had been working as a student notetaker for deaf students while chipping away at an illustration degree. I wasn’t able to keep from drawing on the job, and my illustrated notes had gained some acclaim within deaf circles in the College of Imaging Arts and Sciences. Dr. Quinsland had heard about my visual notes and asked me to drop by his class to see if my notetaking style could work for Dan. After taking notes for his class, I digitally published my notes online and typed the words so Dan’s computer applications could read them to him.

After the class, Dan described challenges across his diverse course load and we all realized there was much left to explore. Dr. Quinsland was able to find funding through the Student Services department and had me join Dan a few times a week in all of his classes, from English to accounting, so we could test different ways of taking notes. I was impressed by Dan’s commitment to the project and resilience during class. Although RIT’s access support services were designed to be a service where hearing people provide a service for deaf and hard of hearing students, I began searching for ways in which he could become an active part of the notetaking process. More than providing access to the information from class, I wanted to find a way that Dan could document his own experience and pick up skills that would follow him beyond college.

The initial hurdle for our collaborative notetaking involved accommodating drastically different classroom environments. For his English class, we found that Dan could take photos with my smartphone while I wrote notes and drew diagrams. When we integrated it all together after class, Dan’s perspective through his images became the driving force of the narrative. This method didn’t suit his business software course, but we found that using clip art symbols could help cue him to the correct formulas when scanning data tables. We experimented with a number of different applications and tablet PCs before arriving at a digital pen system that combined notes with audio recordings. Writing full descriptions became less critical when Dan could later click on the words and hear the specific lecture referenced from the actual class. In fact, writing was no longer required at all, and Dan had no trouble navigating his notes when they were paired with the audio. Dan and I had found a system that bypassed the obstacles he faced with written language and allowed him to take notes from his own perspective.

Encouraged by the results of our project and the potential of a future with collaborative access services, Dan, Dr. Quinsland, and I compiled the notes and presented at several national conferences in 2010 and 2011. For Dan’s portions, he was able to make pictographic cue cards that he could read to stay on track during the presentations. Our sessions were attended by people from all over the world and across a range of disciplines who expressed interest in adopting aspects of our work for their own schools. As the first professional conferences Dan or I had ever attended, the presentations opened new doors for us and allowed Dan to share his new skills to inspire others.

All these years later, Dan nears his graduation and the digital pen is still in use. He continues to take his own notes, as well as utilize apps on his smartphone to make his life in and out of the classroom more accessible. As far as his family knows, Dan was the first person from Upstate, NY with his type of cancer to later graduate high school with a regents diploma, and he may be the first with a 4-year college degree when he walks the stage in May.

Like many college students looking at the great beyond after college, Dan is considering a masters but first wants some 9-5 work experience under his belt, and perhaps some time for travel. For the long-term, he hopes to build a business someday with social impact in mind, perhaps a daycare or an orphanage, where he can work with kids. More than a large paycheck, he is aiming to find a rewarding work experience where he can invest in future generations.

With an eye on up-and-comers with struggles similar to his own, I asked Dan how he remains optimistic when others doubt him, and how he stays motivated knowing that he will need to put in more work than most to accomplish his goals. He emphasized the importance of breaking things down, and attacking problems bit by bit rather than all at once. Being an accessibility ninja takes work and dedication; don’t think something can only be done one way and don’t take no for an answer. No one can tell the future, so you need to be flexible with what life throws at you and keep an open mind. You can accomplish the same goals, just in a different way. Dan acknowledges that he still has a lot of daily struggles and frustrations, but the end result is getting there, one way or another. When all your energy is focused in one direction, It’s just a matter of time.