Spotting Opportunity with Inclusive Vision Science

Device for retinitis pigmentosa safe at two years, restores some functional vision and visual function. Howard Larkin reports

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Including colleagues with vision loss and blindness on research teams can increase the impact and relevance of vision science, especially now both basic research and clinical practice are moving towards person-centred models.   Researchers, including several with visual impairment or blindness, shared their perspectives on the value persons with sensory disabilities can add and how they can be better integrated into research programmes, at the ARVO 2021 Annual Meeting.   What the research questions are, what the data are, how they are analysed and written up, and who actually conducts the research— all profoundly influence the research product, said Mahadeo Sukhai PhD, who is a congenitally blind biomedical research scientist, and now director of research and chief accessibility officer at the Canadian National Institute for the Blind, Toronto, Canada.   “If we don’t understand our researchers and our research population, we are literally blinded to the things we are figuring out,” he said.   For the fully sighted, including researchers with visual disabilities not only offers the opportunity to gain insight and relevance in studies, but it can also be a valuable personal learning experience, said Walter Wittich PhD, CLVT, associate professor at the School of Optometry of the University of Montreal, Canada.   “Here is a fascinating opportunity to learn something new, to go about discovering your own misconceptions, your own biases, your own moments of stereotyping someone else, and see if you can challenge yourself.”   VOICE AT THE TABLE   Reflecting on his experience supervising his first blind PhD candidate, Dr Wittich noted the student is intimately familiar with being visually impaired, and he recommended talking to them as much as possible. Find out what it is like, how they cope, and, importantly, what they do and do not need.   Natalina Martiniello PhD, CVRT, who recently earned her PhD in visual impairment and rehabilitation with Dr Wittich, and who is now a research associate at the University of Montreal and president of Braille Literacy Canada, agreed.   “People with visual impairment are not just the clients and the patients we serve and study but also the experts and colleagues we work alongside.”   Her personal experience as a blind person has helped Dr Martiniello in her research developing evidence-based strategies for working-age and older adults with vision loss to learn braille.   “Inclusion and accessibility really are beneficial to everyone. Inclusion is all about who has a voice at the table.”   Yet despite these perhaps obvious benefits, the inclusion of persons with disabilities in health research—especially for visual impairment—is woefully low, said Bonnie Swenor MPH, PhD, assistant professor at Wilmer Eye Institute and founder and director of the Disability Health Research Center (both at Johns Hopkins University, Baltimore, Maryland, USA). A recent study she conducted of National Institutes of Health grants in the USA found less than 2% of principal investigators reported any kind of disability, with visual disability as the smallest group.   The total proportion of principal investigators with disabilities actually fell from 1.9% to less than 1.2% in the decade ending in 2018, reported Dr Swenor, who is visually impaired. The study implies “there is a gap, and we are not paying attention to it,” she said.   FACING THE CHALLENGE   Perhaps the biggest obstacle to including visually impaired people in research programmes is people simply do not know how to go about it, Dr Wittich said. He recommended reaching out to colleagues who have experience and contacting the disabilities office found in most universities.   Most of all, be prepared to negotiate frankly when determining what supports each individual needs. With Dr Martiniello, this included adding extra time to work through encountered barriers when using research platforms not necessarily designed to meet international accessibility standards. It also included 3D printed models of the visual cortex to learn vital anatomy tactilely.   “It’s about good supervision. Communicate; talk to your student about what they need,” Dr Wittich said.   Respect the dignity of disabled colleagues and recognize they have the same differences of ability, resilience, and social identity as anyone, Dr Wittich added. And just because they have personal experience doesn’t mean they are not serious about science, though this is a common bias, Dr Swenor said.   The technical nature of much of the research and educational materials in vision science can be especially challenging for visually impaired colleagues, said Gordon Legge PhD, professor of psychology at the University of Minnesota, Minneapolis, USA, and the director of the Minnesota Laboratory for Low-Vision Research. Wet labs, specialised optical equipment, and graphic data present particular obstacles.   Drawing on his own experience on both sides of the inclusion process, Dr Legge reiterated the need for supervisors to mentor and advocate for visually impaired researchers within the institution.   “You have to be a little bit proactive,” he said.   The situation has significantly improved since Dr Legge, who is visually impaired, applied to college decades ago. He was discouraged by most universities from taking science or engineering. He ended up at the Massachusetts Institute of Technology (MIT), where they pledged to make it work—and they did.   Natalina Martiniello: natalina.martiniello@umontreal.ca   Bonnie Swenor: bswenor@jhmi.edu   Walter Wittich: walter.wittich@umontreal.ca   Gordon Legge: legge@umn.edu   Mahadeo Sukhai: Mahadeo.Sukhai@cnib.ca 
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