Natasha Hirst is one of life's achievers. She has a first-class master's degree in chemistry, served as president of the National Union of Students in Wales, was named most enterprising student in a national competition, and is currently writing her Ph.D.
But despite her love for the field, Hirst will never work as a scientist. She is profoundly deaf, and the barriers she has faced have left her with a very dim view of academic science in the United Kingdom. As a result of what she calls "hideously poor access for me as a deaf person and a resounding lack of will for anything to be done about it," she left science last year for a career in politics.
A bottleneck for deaf scientists
The United Kingdom's Disability Discrimination Act (DDA) of 1995 makes it illegal for employers and education providers to discriminate against disabled employees and students. But the act came into force only in 2002, and many universities and employers are only now learning what it means for them. They are just figuring out, for example, that education providers must make reasonable adjustments to prevent disabled students from being placed at a "substantial" disadvantage. These obligations are anticipatory: The act charges educators with thinking ahead to make the accommodations disabled students are likely to need.
The challenges are considerable for deaf students seeking science training. Hirst can lip-read, but she can't lip-read and write notes at the same time; it just isn't possible. So she needed a note taker during lectures, and fellow students just wouldn't do. "I needed to know what was said and not someone's interpretation of what was said," Hirst observes. "The brief notes that fellow students took were not enough for me to get the full lecture content." Under U.K. law, Hirst qualified for government subsidies to pay for services such as note takers, translators, and special equipment, but along with her disability adviser, she struggled to find someone who was up to the job. Her solution? Do the best she could on her own, then talk to the lecturers afterward.
Lab practicals were even worse. "I had no support in tutorials or lab practicals. I never heard any instructions and without fail went wrong every single time," Hirst says.
The health-and-safety excuse
It's true, Hirst says, that teachers and trainers don't set out to discriminate against deaf people. But, she says, the problem goes beyond a failure to meet special needs. Hirst says that in her training she was viewed as a potential hazard--to herself and to others--and not as a promising young scientist. "It was voiced to me that if I had not been so good at chemistry, I would not have been allowed into practical sessions for health and safety reasons," she says. "But if you don't do the practicals, you cannot get an accredited degree."
Hirst is not alone in believing that health and safety regulations are used to discriminate against deaf scientists. Iain Poplett, a research fellow at King's College London working on nuclear quadrupole resonance spectroscopy, says he has missed out on jobs because employers used health and safety regulations as an excuse for not employing deaf people. "I believe that a deaf scientist is more likely to be employed in the laboratory in the 1960s than today because many employers think that health and safety laws supersede the Disability Discrimination Act, and this is simply not true," he says. "If I were a careers adviser to a deaf person thinking of working in science, I would explain that they would have a better chance if they aimed for a desk job such as theoretical physics, mathematics, or computer science," Poplett says.
"The bottom line," says Sarah Page of the external diversity team at the Health and Safety Executive (HSE), "is that those in charge of science and educational institutions have to assess risk, taking the at-risk population's personal circumstances into account. For people who have total hearing loss, there are many other ways of alerting them to danger, such as visual warnings, vibrating alerts, or supervision/buddying." Page concludes, "I can see no reason to justify the exclusion of deaf people from scientific laboratories."
Government officials are addressing the problem, but progress is slow. "HSE and the DRC [Disability Rights Commission] are working together to produce guidance on health and safety risk assessment and disability, due out later this year," Page says. Some guidance is already available on the DRC's Web site.
Uneven assistance in the U.K.
In the United Kingdom, disabled students can get financial support to help them overcome the limitations their disabilities impose--although not every student can get as much as they need. U.K. undergraduates can get a disabled-students allowance (DSA) of up to £18,500 from their local education authority. The DSA covers the costs of interpreters, note takers, and equipment--such as, in Hirst's case, a laptop computer and a radio aid. Postgraduates on research-council-funded projects can get similar support. But postgraduates such as Hirst, whose training is not supported by the research council, qualify for just £5000--which she says isn't enough. This lack of financial support as a postgrad, Hirst says, was the final blow that caused her to leave science.
So Hirst says she had to fight to get help. When she needed to attend a training course, neither her department nor the trainer agreed to pay the costs of an interpreter or equipment. She had to threaten to sue her department, she says, before it decided to contribute to the cost.
She has the same problem at conferences. "Whoever sends me won't pay for access needs, and whoever organises the event won't ensure that it is accessible," she says. "I am not a person who gives up easily, but this problem got too big to fight."
But even those who have money can have trouble finding the help they need. For people whose first language is sign language, finding an interpreter can be difficult. Audrey Cameron, now a science teacher in a mainstream school, received part-time communication support from her research council during her Ph.D. "But the interpreters at the time used signed-support English, which is different to British Sign Language [BSL]," she says. "In the end, my mother came to the lectures and took notes for me." A couple of years later, the Royal National Institute for the Deaf set up a new interpreter agency, and the situation improved--but this didn't solve the problem completely. "I used interpreters for meetings, conferences, and courses, but none of them could keep up with the science jargon at Ph.D. level, so I often had to resort to pen and paper," she says. Some efforts have been made to address the problem. Some Web sites, for example, allow students and interpreters to look up science, engineering, and biotechnology terms and translate them into BSL.
Giving presentations--another key aspect of science and science training--can also be a major challenge. Cameron's solution? "I would ask a colleague to read my script and record her voice as a soundtrack to the presentation with subtitles on screen," she says. Answering questions after the presentation is a harder problem, however, in a dark and crowded room where lips can be difficult to see. For this, there's no substitute for a sign-language interpreter.
Back in the classroom, many deaf people do not use sign language and choose to lip-read instead. In these cases, simple measures can ensure that a deaf student is fully included in the lecture or practical. Providing written instructions or notes, letting the student sit at the front of the class, improving lighting, and using hearing-aid systems, if required, can make the difference between success and failure. "Oh, and beards should be banned," Hirst says.
Grant Jacobs, a New Zealander who did his Ph.D. at MRC Laboratory of Molecular Biology in Cambridge, U.K., agrees that such details can make a big difference. Jacobs says he had a happy time at Cambridge, but he recalls an incident during his undergraduate degree that, he says, still makes him angry. "A date for one exam was shifted forward in time, with the announcement only given verbally. I had no idea the date had been moved and was gutted about missing the exam."
Expatriate success stories
Until the DDA became law in the U.K. in 2002, the provision of assistance was dependent on the kindness of individual tutors. Tilak Ratnanather, now an assistant research professor in the department of biomedical engineering at Johns Hopkins University in Baltimore, Maryland, had a very helpful admissions tutor at his university in the United Kingdom. His tutor's assistance was "impossible to quantify in terms of the benefits I reaped in the first year of my undergraduate degree," he says. The tutor "arranged for a set of lecture notes to be sent to me before each semester started. He also informed all [his other] lecturers that they would need to use the radio hearing-aid system."
Today, Ratnanather supervises and manages 10 projects covering topics including schizophrenia, autism, and auditory disorders. He left the United Kingdom, he says, not because of discrimination but for better opportunities in the United States. "I might have ended up as a lecturer in the U.K., but I would not be doing the kind of cutting-edge work that I do now," he says. "In the U.S., I have the freedom to pursue the things that interest me without the encumbrances of fiscal problems in U.K. science--though these do exist in the U.S. now."
Peter Steyger, now an associate professor of otolaryngology-head and neck surgery at Oregon Health and Science University in Portland, left his home country for the United States because "in the U.S., there is affirmative action to support the progress of deaf scientists." The mentor's directory at the U.S. National Institute on Deafness and Other Communication Disorders, he notes, lists researchers committed to mentoring deaf students, postdoctoral fellows, and junior scientists. Also, "NIH [National Institutes of Health] offers disability supplements to NIH-funded grants, which funds the salary and benefits of a disabled student," Steyger says. "This program really got me integrated with the U.S. system."
Are things improving in the U.K. ?
"Disabled people are under-represented in higher education in the U.K.," says Steve Haines, policy manager for education at the DRC, "but there have been improvements made since the Disability Discrimination Act came into force for post-16 education. An increasing number of disabled people are going to university, and this is as a direct result of the DDA."
Haines believes that many of the problems that disabled people encounter are due to the lack of awareness of university staff. "We do know that people are often more aware and concerned about health and safety regulations than they are about the needs and capabilities of disabled students. But after some disability-awareness training, these problems can often be sorted out before any litigation. Making adjustments for deaf students in science laboratories should be a straightforward task."
As signs of progress, Haines cites the work of organisations such as SKILL--the National Bureau for Students with Disabilities--and the National Association of Disability Practitioners. But, he says, deaf students in particular face practical issues. "Not only is there a shortage of BSL interpreters, they are also an expensive resource."
Barbara Waters, executive director of SKILL, agrees that more attention needs to be paid to practical issues. "We would like to see a review of the DSA for deaf students and give them a top-up to pay for interpreters for those courses that require more contact hours than usual," she says. Like Haines, she believes conditions for disabled undergraduates and postgraduates have improved since the introduction of the DDA and that the uptake of university places by disabled students is increasing.
That's a very important thing, Waters notes, because a university education is especially important for disabled people. "The unemployment level among disabled people in the working population is 50%," she says. But "once a disabled person graduates, their chance of employment is around the same as everyone else."
Resources for Deaf Scientists
A guidance for post-16 education providers on implementation of the Disability Discrimination Act and how to perform inclusive risk assessments can be found at the Learning and Skills Development Agency.
Nadya Anscombe is a freelance science writer in the United Kingdom.
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