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Alyssa is a doctoral student in neuroscience at the University of Rhode Island. Follow them @yes_thattoo or check out their personal blog.
Professor Stephen Hawking died on March 14, 2018. From all directions, I've been flooded with reactions to his passing. Even people who don't usually post about disability topics or about science are sharing their reactions. As a disabled graduate student and scientist, I’m feeling the loss.
There is, of course, his actual scientific work. He argued for the possibility of what is now called Hawking radiation, through which a black hole can effectively emit particles due to quantum effects. He then helped explain how this was possible from an information perspective, losing a bet in the process. That wasn't his only scientific bet, either — he lost $100 when the Higgs boson was found, too. He advised graduate students in theoretical physics, leading them quickly into high-risk, high-gain projects. Basically, Dr. Hawking was a theoretical physicist as well as a mentor.
Dr. Hawking was also disabled. He started noticing symptoms in his final year at Oxford, and he was diagnosed with amyotrophic lateral sclerosis (ALS) in graduate school. (This means he was disabled in grad school, by the way!) He used mobility aids — crutches, at that point, and later a wheelchair. He wrote about the barriers he faced in academia, even as a prominent scientist. And he even wrote about barriers to participation in his the 2011 World Report on Disability address.
In addition to using a wheelchair, Dr. Hawking was one of the most visible users of Augmentative and Alternative Communication (AAC) around. Quite a bit of development for communication supports and alternative access came from Intel working with him and sponsoring his devices. A graduate assistant even helped develop the cheek switch system he used to access his computer. As a scientist who uses AAC, if faster and less frequently than Dr. Hawking did, I look to him as proof that AAC users can be scientists and professors. He was a nice example to have.
Not all of this recent attention on Dr. Hawking’s life, however, has been positive. His disability also means that I get to see lots of people talking about how he's "free" of his disability (or his wheelchair) now, that death somehow frees him from the confines of his disability. Several people have written about why framing death that way is scary, and it boils down to this: if you take death as freedom, and assistive technology as what we need to be free of, what does that mean for our lives? From questions as big as life and death to those as mundane as whose classes I'll take, I pay attention to how people talk about disability. It's part of navigating the world while disabled.
This semester Dr. Hawking’s presence is felt in the work I’m doing, which involves brain computer interfaces. I'm reviewing the scholarship on one kind of brain computer interface in my physiological psychology class, and I’m presenting next week on an experiment with the same type of system. Dr. Hawking can be seen as a partial inspiration for this choice — these interfaces are being developed with people with disabilities, including ALS, in mind. One reason I'm specifically looking at work done with disabled participants is that a lot of the development has been done on subjects with no known neurological disabilities. Dr. Hawking, for example, didn't use brain computer interfaces partially because they couldn't get a good signal from his neural activity. If these interfaces are being designed for people with neurological disabilities, but the scientific community largely tests them on people without neurological disabilities, then we need to be aware of this shortcoming.
Have you ever been affected by the passing of a scholar, whether in your field or not? How might their work have affected yours?
[Image courtesy of Flickr user Daniel Arrhakis under a Creative Commons license.]
