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Disability no barrier to science

By Sarah Hillenbrand

April 17, 2015

All images courtesy of Digital Media Specialist Matthew Chilbert

During the event, the keynote and panel discussion were streamed live for those who were unable to make it. Video is below.

When Josh Miele was growing up, he wanted to be a physicist. But a family friend said, “He can’t be a physicist because physicists write on blackboards.” Miele, who is blind, earned a bachelor’s degree in physics. He then interned at NASA, sending probes into space. To do his research, he found himself constantly having to engineer new software, new devices, and new ways of communicating his results. He found himself increasingly pulled toward developing auditory and tactile technologies to enable universal access to information, going on to earn a PhD in psychoacoustics from UC - Berkeley. He now runs his own research lab at the Smith-Kettlewell Eye Research Institute. One of Miele’s many ongoing projects, called YouDescribe, uses audio narration to make the educational and entertaining content in videos available to blind people.

[caption id="attachment\_12520" align="aligncenter" width="1024"]Josh Miele engages the audience. Josh Miele engages the audience.[/caption]

On April 14th, Miele helped welcome a crowd of around fifty students with both visible and invisible disabilities to the Lawrence Hall of Science (the Hall) as a panelist at the Hall’s STEM Career Showcase for Students with Disabilities. The event was spearheaded by Sherry Hsi, Research Director at the Hall, and was modeled on a similar event held recently at the North Carolina Museum of Natural Sciences. It opened with a keynote address from genetic counselor Ronit Mazzoni and panel discussion. Afterwards, students moved on to the Carousel of Science and Engineering Activities. In one room, students met new amphibian, reptilian, and mammalian friends. In the next, tactile math puzzles from around the world clattered and clicked. In the next, representatives from organizations including Google, Microsoft, MaKey MaKey, and the California Autism Foundation were on-hand to chat.

Miele told students that the resources and technologies available to people with disabilities are greater than ever before, thanks to local organizations like the Ed Roberts Campus, LightHouse for the Blind and Visually Impaired, and the Hatlen Center for the Blind, which brought a large contingent of students to the event. “It’s a lot of extra work to be a disabled student. But the Bay Area is like the Disneyland of disability,” he said. “Anything you need is just a Google and a BART ride away.” Too often, people with disabilities are consigned to low socioeconomic status due to the lack of access to educational and employment opportunities. Miele hopes to change that by offering encouragement, inspiring creative solutions, and most importantly, helping to connect students with resources and a community of supportive people. “Rather than thinking it can’t be done, now they know that there are people out there fighting the same fight, dealing with the same issues, trying to achieve the same things, and they can reach out to them for support,” he said.

Sarah Levin is a new student at Berkeley City College with an interest in bioengineering. Levin, who is legally blind, heard about the event through a mailing list. She left feeling inspired. “Coming to college, it’s time to actually realize my dream,” she said. “I’m asking myself a lot whether it’s reasonable, whether I can do it. Hearing stories from people who have set a path and are determined, I’m thinking it is possible, and that’s something that I’m going to hold onto.”

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Ronit Mazzoni, the event’s keynote speaker, told one such story. In high school biology class, she became fascinated by genetics and decided to pursue a career in genetic counseling. Mazzoni, who is blind, said that the biggest obstacle turned out to be simply convincing others she was capable. She heard things like, “I just don’t know how you’re going to know if someone’s upset or crying.” Mazzoni now works as a genetic counselor at Santa Clara Valley Medical Center, where she advises clients on prenatal, pediatric, and cancer-related issues. And she can tell when someone is crying, by the way.

“Determination and creativity have gotten me through many challenges,” Mazzoni said. “And hanging around supportive people.” By joining mailing lists, asking questions, and seeking out other people with disabilities in related fields, she made it work. These days, she explains genetic mutations and chromosomal abnormalities by moving beads around on pipe cleaners attached to a magnet board.

Mazzoni and Miele were joined by panelists Hoby Wedler and Akhila Raju. Wedler is a fourth year PhD student in computational organic chemistry at UC - Davis who is blind. He makes 3-dimensional printed models of chemical structures to show his results. After the panel, he handed a model off to a curious student, explaining how the bonds in a molecule’s structure allowed other molecules to become trapped inside. Wedler shares his love of chemistry, running chemistry camps for blind students through a group he founded called Accessible Science. Wedler told the students that self-advocacy was a major component of his work. “Instead of just being a student, you’re also kind of a teacher because you have to explain to people what you can and cannot do,” he said.

[caption id="attachment\_12521" align="aligncenter" width="1024"]Hoby Wedler showing off his 3D printed molecules to a group of students. Hoby Wedler showing off his 3D printed molecules to a group of students.[/caption]

Akhila Raju, a third-year computer science major at UC - Berkeley, found that in dealing with her chronic depressive disorder, she often put in the work, but did not get the expected results. Suffering from months-long depression at a time, her diagnosis changed her life. “There wasn’t something wrong with me, I was just different,” she said. She had to be persistent in bothering her professors to get what she needed. She has also found she is happier when she keeps up with her extracurricular activities, even if it means her degree will take a little longer. Raju founded Tequity, a group devoted to promoting minority inclusion in the tech industry.

All of the speakers have had to get creative to work with their disabilities. In finding their own solutions, they wound up sharing them with many others. It is no coincidence that these students reached out to other people with disabilities to build up a community. Miele sees this support system as more important than any device, software, or other resource available. “Growing up, I was the only cool blind kid I knew,” he said. “And that wasn’t the kids’ fault. I see parents telling blind kids don’t touch that, be careful, wait for me, let me help you with that. All these cautions and shame-related things hold people back.”

These are the messages Miele hopes to overcome by connecting disabled students with disabled role models. For him, connecting with and becoming inspired by other people like him was key to his success. “I had no blind pride until I came to Berkeley and met a seriously large community of high-achieving cool blind people,” Miele said. “I had absorbed a lot of the messages about blindness in the media and popular culture. Coming to Berkeley was a revelation. I saw that no, I was not the only one. I actually think of myself as a blind person. That’s my identity. I feel very connected to it and really pretty happy about it.” Thanks to Miele, Mazzoni, Wedler, Raju, and all of the event organizers at the Hall, a seed of that revelation was planted for a new generation of disabled students.

Ashley Barajas and Student

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