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A New Resource for Disabled Researchers

Peter--not his real name--found out he had an autoimmune condition similar to multiple sclerosis a year after he started his PhD programme. The diagnosis came as a shock, of course, and his shock was compounded by the reaction of his peers. "Immediately, my colleagues were extremely negative. It was as if the discovery of the condition had changed me overnight. They immediately perceived me to be a lesser team member and, as a result, my supervisor ... encouraged me to leave my PhD." He stuck it out and, thanks largely to self-determination and the encouragement of a mentor, Peter is now on the verge of completing his degree.

Peter's story is recounted on Premia, a new, UK-based Web resource that aims to help disabled graduate students get through their research degree and to guide them to rewarding careers. Premia is the culmination of 3 years of research led by a team at the University of Newcastle involving interviews with disabled students and graduates from universities across the UK.

At Premia, students with a range of disabilities--deafness, visual impairments, dyslexia, chronic fatigue syndrome, mobility impairments, and mental health difficulties, among others--tell their stories and give advice on pursuing a research degree, from dealing with a supervisor to attending a conference. Together, these students, their research supervisors, career development staff, and other support staff have compiled a list of the best practices on how to make research education more accessible to all. The result, which was launched late in 2005, is freely accessible.

"A must" for disabled researchers

Support for disabled undergraduate students has been available for many years in the UK, but nothing existed specifically for researchers. "The Premia site concentrates on the issues in the context of research education. We have been keen not to remake wheels," explains Val Farrar, Premia project officer at the University of Newcastle. "To my knowledge," comments Rachael Maggs, a senior programme manager at UK GRAD--a UK not-for-profit organisation that develops professional and personal skills training for postgraduate researchers, "there is nothing else quite as all-encompassing as this site," calling it "a must" for disabled researchers. Maggs describes Premia as a "one-stop shop" for people who provide training to disabled post-grad researchers.

The Newcastle team’s research showed that the need for this type of resource is growing as more disabled students enter research graduate programmes than ever before. About 5% of the postgraduate research population--compared to 6% of the undergraduate population--is disabled, and the numbers have been rising every year, says Farrar.

The challenges these disabled postgraduate researchers face are very different from the ones faced by undergraduates, the Newcastle team found. Graduate students, they noted, are usually expected to teach and present at conferences, and they typically have much heavier reading loads. Furthermore, they are expected to just get on with things, often with little supervision. "Research study is a lonely, isolating, and anxious experience at the best of times. Doing it with an impairment multiplies those factors," says one PhD student interviewed for the Newcastle study. Another student chose very similar language: "For anyone a PhD seems to be a rather isolating experience, but I think this is magnified when a student experiences environmental, institutional, and attitudinal barriers."

People in the disability field talk about "barriers" to success. Premia, purposely, does not focus on physical barriers–-the Newcastle team say such resources already exist--but on the challenges for researchers that go beyond inaccessible buildings and desks at the wrong height. Deaf researchers have to contend with a lack of signs for complex, subject-specific concepts. Blind researchers struggle with heavy reading loads since reading with assisted technologies takes longer. Others find the logistics of conferences especially daunting. And many talk of how those around them minimise or misunderstand their disability.

All this can take a toll on disabled researchers' self-confidence. "Regardless of the impairment, there is some generalised prejudice against disabled people that some might feel inhibited by," says Tom Shakespeare, a sociologist and bioethicist at the University of Newcastle.

The Newcastle team built the Premia Web Site to offer researchers, supervisors, and support staff sample solutions to problems faced by disabled scientists. Online student resources related to funding, disclosure, and solving disability-related issues for a PhD viva are available. Within a few months, Premia will add audio versions of these resources.

The Newcastle group also tried an e-mentoring scheme that sought to match disabled students with mentors in their own fields. The project started with a pool of 10 students and 10 mentors, though only three matches were made where mentors and students worked in the same field. But for those three cases, "mentoring made a huge difference," says Penny Warin, a careers advisor at the University of Newcastle who led the mentoring project. Peter, who was in one of the three pairs, first spoke with his mentor via e-mail and then arranged to meet in person. The mentor helped Peter think constructively about applying for positions in laboratories and gave several examples of disabled scientists working for the National Health Service.

"The e-mentoring was a real eye opener," Peter reported. "It gave me a wider picture of what paths were open to me and dispelled the myths that my short sighted colleagues had created." The mentoring project was a one-off, but institutions looking to learn from their pilot scheme can find an e-mentoring toolkit in Premia's library.

Supervisors' attitudes can also make a big difference, the Newcastle study found. "My supervisors have been very apologetic about the lack of facilities within the department, for example, a 2-year wait for an accessible PC. However, their positive, encouraging, and supportive attitudes toward me have well outweighed any practical difficulties," says a blind student interviewed by the Newcastle group.

Creative thinking can help

When it comes time to finding a job, a lack of confidence once again can be a disabled applicant’s worst enemy. It's important that a disabled applicant not disqualify herself because they think they won’t be able to perform tasks required like driving or going to conferences, Warin says. Creative thinking backed up by government subsidies can help tackle specific challenges. The team found that the most successful job-seekers were the ones who were able to overcome the negative attitudes held by others by being proactive. "Go to an employer with a solution," advises Warin. Advice for finding a job is compiled under Premia's access to employment section.

Research staff and employers shouldn't be tempted to view disability accommodations as charity work, say those in the field. "It's about being fair" and opening the field to a broader pool of talented individuals, says Shakespeare, who himself has a condition known as achondroplasia, or restricted growth. Everyone can benefit from learning about other disabled researchers; an entire research team can gain from a more flexible environment. "The challenge to overcome barriers can be a stimulus for research; it stimulates innovative thinking," says Shakespeare.

One student interviewed by the Premia team devised his own method for dealing with his reading difficulties: He used colour-coding and visual symbols when he made his notes, and when it came time to write, his ideas were already organised by easy-to-group themes. At first, Farrar recounts, his supervisor had a hard time with his approach. But eventually the whole research group incorporated his methods into mind maps used in group-wide work.

The funding for their 3-year project has ended, but the Newcastle team intends to maintain the site and to add an online forum where disabled students and others can share their experiences. Although Farrar stresses that each individual has unique challenges, she believes that individual coping strategies might be useful to a range of disabled researchers. For example, "dyslexic students often develop their own learning-management strategies, but there is currently no way of sharing them with other dyslexic people. ... We would love to create a forum where that can happen," she explains. "The interesting part is when that dialogue happens."

Now that he has nearly completed his PhD, Peter's advice to others is to "be proactive." "Once you have identified a problem," he says, "address it immediately with [your] supervisor, a colleague, or an intermediary." And when things go well, "capitalise on your successes, however small."

Melissa Mertl is a freelance writer based in London.