Deaf Scientists Just Created Over 1000 New Signs to Dramatically Improve Ability to Communicate
For the deaf, talent and hard work may not be enough to succeed in the sciences. According to the National Science Foundation, deaf Americans are vastly underrepresented in the STEM fields, a discrepancy that has profound economic implications.
The problem with STEM careers for the deaf and hard-of-hearing is that there are not enough ASL signs available.
Deaf and hard-of-hearing professionals in the sciences earn 31 percent more than those employed in other careers, according to a 2010 study by the National Technical Institute for the Deaf (NTID) in Rochester, N.Y., the largest technical college for deaf and hard-of-hearing students. But at the same time, in 2017, U.S. students with hearing disabilities earned only 1.1 percent of the 39,435 doctoral degrees awarded in science and engineering.
One reason so few deaf students gravitate to science careers and may struggle to complete doctoral programs is the communication chasm between deaf and hard-of-hearing scientists and their hearing colleagues.
Lorne Farovitch is a doctoral candidate in biomedical science at the University of Rochester of New York. Born deaf and raised by two deaf parents, he communicated solely in American Sign Language (ASL) until reaching graduate school. There, he became frustrated at the large chunk of his workdays spent communicating with hearing lab mates and professors, time he would have preferred spending on his scientific work.
The problem with STEM careers for the deaf and hard-of-hearing is that there are not enough ASL signs available, says Farovitch. Names, words, or phrases that don't exist in ASL must be finger spelled — the signer must form a distinct hand shape to correspond with each letter of the English alphabet, a tedious and time-consuming process. For instance, it requires 12 hand motions to spell out the word M-I-T-O-C-H-O-N-D-R-I-A. Imagine repeating those motions countless times a day.
To bust through this linguistic quagmire, Farovitch, along with a team of deaf STEM professionals, linguists, and interpreters, have been cooking up signs for terms like Anaplasma phagocytophilum, the tick-borne bacterium Farovitch studies. The sign creators are then videotaped performing the new signs. Those videos are posted on two crowd-sourcing sites, ASLcore.org and ASL Clear.
The beauty of ASL is you can express an entire concept in a single sign, rather than by the name of a word.
"If others don't pick it up and use it, a sign goes extinct," says Farovitch. Thus far, more than 1,000 STEM terms have been developed on ASL Clear and 500 vetted and approved by the deaf STEM community, according to Jeanne Reis, project director of the ASL Clear Project, based at The Learning Center for the Deaf in Framingham, Mass.
The beauty of ASL is you can express an entire concept in a single sign, rather than by the name of a word. The signs are generally intuitive and wonderfully creative. To express "DNA" Farovitch uses two fingers of each hand touching the tips of the opposite hand; then he draws both the hands away to suggest the double helix form of the hereditary material present in most organisms.
"If you can show it, you can understand the concept better,'' says the Canadian-born scientist. "I feel I can explain science better now."
The hope is that as ASL science vocabulary expands more, deaf and hard-of-hearing students will be encouraged to pursue the STEM fields. "ASL is not just a tool; it's a language. It's a vital part of our lives," Farovitch explains through his interpreter.
The deaf community is diverse—within and beyond the sciences. Sarah Latchney, PhD, an environmental toxicologist, is among the approximately 90 percent of deaf people born to hearing parents. Hers made sure she learned ASL at an early age but they also sent Latchney to a speech therapist to learn to speak and read lips. Latchney is so adept at both that she can communicate one-on-one with a hearing person without an interpreter.
Like Favoritch, Latchney has developed "conceptually accurate" ASL signs but she has no plans to post them on the crowd-sourcing sites. "I don't want to fix [my signs]; it works for me," she explains.
Young scientists like Farovitch and Latchney stress the need for interpreters who are knowledgeable about science. "When I give a presentation I'm a nervous wreck that I'll have an interpreter who may not have a science background," Latchney explains. "Many times what I've [signed] has been misinterpreted; either my interpreter didn't understand the question or didn't frame it correctly."
To enlarge the pool of science-savvy interpreters, the University of Rochester will offer a new masters degree program: ASL Interpreting in Medicine and Science (AIMS), which will train interpreters who have a strong background in the biological sciences.
Since the Americans with Disabilities Act was enacted in 1990, opportunities in higher education for deaf and hard-of-hearing students have opened up in the form of federally funded financial aid and the creation of student disability services on many college campuses. Still, only 18 percent of deaf adults have graduated from college, compared to 33 percent of the general population, according to a survey by the U.S. Census Bureau in 2015.
The University of Rochester and the Rochester Institute of Technology, home to NTID, have jointly created two programs to increase the representation of deaf and hard-of-hearing professionals in the sciences. The Rochester Bridges to the Doctorate Program, which Farovitch is enrolled in, prepares deaf scholars for biomedical PhD programs. The Rochester Postdoctoral Partnership readies deaf postdoctoral scientists to successfully attain academic research and teaching careers. Both programs are funded by the National Institutes of Science. In the last five years, the University of Rochester has gone from zero deaf postdoctoral and graduate students to nine.
"Deafness is not a problem, it's just a difference."
It makes sense for these two private universities to support strong programs for the deaf: Rochester has the highest per capita population of deaf or hard-of-hearing adults younger than 65 in the nation, according to the U.S. Census. According to the U.S. Department of Education, there are about 136,000 post-secondary level students who are deaf or hard of hearing.
"Deafness is not a problem, it's just a difference," says Farovitch. "We just need a different way to communicate. It doesn't mean we require more work."
When doctors couldn’t stop her daughter’s seizures, this mom earned a PhD and found a treatment herself.
Twenty-eight years ago, Tracy Dixon-Salazaar woke to the sound of her daughter, two-year-old Savannah, in the midst of a medical emergency.
“I entered [Savannah’s room] to see her tiny little body jerking about violently in her bed,” Tracy said in an interview. “I thought she was choking.” When she and her husband frantically called 911, the paramedic told them it was likely that Savannah had had a seizure—a term neither Tracy nor her husband had ever heard before.
Over the next several years, Savannah’s seizures continued and worsened. By age five Savannah was having seizures dozens of times each day, and her parents noticed significant developmental delays. Savannah was unable to use the restroom and functioned more like a toddler than a five-year-old.
Doctors were mystified: Tracy and her husband had no family history of seizures, and there was no event—such as an injury or infection—that could have caused them. Doctors were also confused as to why Savannah’s seizures were happening so frequently despite trying different seizure medications.
Doctors eventually diagnosed Savannah with Lennox-Gaustaut Syndrome, or LGS, an epilepsy disorder with no cure and a poor prognosis. People with LGS are often resistant to several kinds of anti-seizure medications, and often suffer from developmental delays and behavioral problems. People with LGS also have a higher chance of injury as well as a higher chance of sudden unexpected death (SUDEP) due to the frequent seizures. In about 70 percent of cases, LGS has an identifiable cause such as a brain injury or genetic syndrome. In about 30 percent of cases, however, the cause is unknown.
Watching her daughter struggle through repeated seizures was devastating to Tracy and the rest of the family.
“This disease, it comes into your life. It’s uninvited. It’s unannounced and it takes over every aspect of your daily life,” said Tracy in an interview with Today.com. “Plus it’s attacking the thing that is most precious to you—your kid.”
Desperate to find some answers, Tracy began combing the medical literature for information about epilepsy and LGS. She enrolled in college courses to better understand the papers she was reading.
“Ironically, I thought I needed to go to college to take English classes to understand these papers—but soon learned it wasn’t English classes I needed, It was science,” Tracy said. When she took her first college science course, Tracy says, she “fell in love with the subject.”
Tracy was now a caregiver to Savannah, who continued to have hundreds of seizures a month, as well as a full-time student, studying late into the night and while her kids were at school, using classwork as “an outlet for the pain.”
“I couldn’t help my daughter,” Tracy said. “Studying was something I could do.”
Twelve years later, Tracy had earned a PhD in neurobiology.
After her post-doctoral training, Tracy started working at a lab that explored the genetics of epilepsy. Savannah’s doctors hadn’t found a genetic cause for her seizures, so Tracy decided to sequence her genome again to check for other abnormalities—and what she found was life-changing.
Tracy discovered that Savannah had a calcium channel mutation, meaning that too much calcium was passing through Savannah’s neural pathways, leading to seizures. The information made sense to Tracy: Anti-seizure medications often leech calcium from a person’s bones. When doctors had prescribed Savannah calcium supplements in the past to counteract these effects, her seizures had gotten worse every time she took the medication. Tracy took her discovery to Savannah’s doctor, who agreed to prescribe her a calcium blocker.
The change in Savannah was almost immediate.
Within two weeks, Savannah’s seizures had decreased by 95 percent. Once on a daily seven-drug regimen, she was soon weaned to just four, and then three. Amazingly, Tracy started to notice changes in Savannah’s personality and development, too.
“She just exploded in her personality and her talking and her walking and her potty training and oh my gosh she is just so sassy,” Tracy said in an interview.
Since starting the calcium blocker eleven years ago, Savannah has continued to make enormous strides. Though still unable to read or write, Savannah enjoys puzzles and social media. She’s “obsessed” with boys, says Tracy. And while Tracy suspects she’ll never be able to live independently, she and her daughter can now share more “normal” moments—something she never anticipated at the start of Savannah’s journey with LGS. While preparing for an event, Savannah helped Tracy get ready.
“We picked out a dress and it was the first time in our lives that we did something normal as a mother and a daughter,” she said. “It was pretty cool.”
A sleek, four-foot tall white robot glides across a cafe storefront in Tokyo’s Nihonbashi district, holding a two-tiered serving tray full of tea sandwiches and pastries. The cafe’s patrons smile and say thanks as they take the tray—but it’s not the robot they’re thanking. Instead, the patrons are talking to the person controlling the robot—a restaurant employee who operates the avatar from the comfort of their home.
It’s a typical scene at DAWN, short for Diverse Avatar Working Network—a cafe that launched in Tokyo six years ago as an experimental pop-up and quickly became an overnight success. Today, the cafe is a permanent fixture in Nihonbashi, staffing roughly 60 remote workers who control the robots remotely and communicate to customers via a built-in microphone.
More than just a creative idea, however, DAWN is being hailed as a life-changing opportunity. The workers who control the robots remotely (known as “pilots”) all have disabilities that limit their ability to move around freely and travel outside their homes. Worldwide, an estimated 16 percent of the global population lives with a significant disability—and according to the World Health Organization, these disabilities give rise to other problems, such as exclusion from education, unemployment, and poverty.
These are all problems that Kentaro Yoshifuji, founder and CEO of Ory Laboratory, which supplies the robot servers at DAWN, is looking to correct. Yoshifuji, who was bedridden for several years in high school due to an undisclosed health problem, launched the company to help enable people who are house-bound or bedridden to more fully participate in society, as well as end the loneliness, isolation, and feelings of worthlessness that can sometimes go hand-in-hand with being disabled.
“It’s heartbreaking to think that [people with disabilities] feel they are a burden to society, or that they fear their families suffer by caring for them,” said Yoshifuji in an interview in 2020. “We are dedicating ourselves to providing workable, technology-based solutions. That is our purpose.”
Shota Kuwahara, a DAWN employee with muscular dystrophy. Ory Labs, Inc.
Wanting to connect with others and feel useful is a common sentiment that’s shared by the workers at DAWN. Marianne, a mother of two who lives near Mt. Fuji, Japan, is functionally disabled due to chronic pain and fatigue. Working at DAWN has allowed Marianne to provide for her family as well as help alleviate her loneliness and grief.Shota, Kuwahara, a DAWN employee with muscular dystrophy, agrees. "There are many difficulties in my daily life, but I believe my life has a purpose and is not being wasted," he says. "Being useful, able to help other people, even feeling needed by others, is so motivational."