UBC Reports | Vol. 50 | No. 2 | Feb. 5, 2004

UBC Project Makes Life Easier for Those Suffering from Aphasia

Team designs communication aids

By Michelle Cook

(with files from Gayle Mavor, Computer Science Dept.)

Anita Borg, founder of the Institute for Women in Technology in Palo Alto, California, was passionate about using technology to better people's lives. Those who knew her say she was a brilliant engineer with a compelling vision and a way of presenting it that would make people sit up and listen.

When Borg was diagnosed with advanced brain cancer in May 2000, her long-time friend Maria Klawe, UBC's former science dean, says, "It felt like the sun had gone behind a huge cloud."

Borg survived the cancer for much longer than expected but, by 2002, had developed aphasia, a condition that affects a person's ability to process and use language while leaving their mental faculties intact. It most often occurs after a stroke but it can also result from a brain tumour or brain injury.

But cancer and aphasia could not defeat Borg's vitality and enthusiasm. She was determined to use her expertise in technology to find ways to overcome her difficulties communicating. She and Klawe began brainstorming. Their discussion laid the groundwork for a remarkable initiative now underway at UBC called the Aphasia Project.

"Anita was having increasing difficulty with speech, reading and writing," recalls Klawe, now Dean of Engineering at Princeton University. "[But] after realizing that her ability to recognize images was still completely intact, we decided to see if computing technology could enhance her ability to function in a variety of ways."

Klawe shared the pair's initial ideas with Karyn Moffatt, a UBC graduate student, and convinced her to take on the task of designing a computer-based aid for people with aphasia as her master's thesis project. Klawe also approached Joanna McGrenere, an assistant professor of computer science at UBC and a specialist in human-computer interaction, to work with Moffatt on her project in addition to exploring other possibilities.

McGrenere remembers being slightly daunted by the scope of the challenge.

"Human-computer interaction (HCI) is a relatively young field. In HCI, where we're trying to design technology to work for a broad range of users, and one group that hasn't received much attention are people with disabilities, particularly people with speech and language cognitive disabilities," explains McGrenere. "The reason this group doesn't get the same coverage in HCI is because it's difficult working with participants who have difficulty speaking and articulating their needs. It just makes the job of designing technologies for them that much more challenging."

From the start, it was clear to McGrenere and Moffatt that, if they were going to help Borg, they would need a multidisciplinary team of experts. They brought in several other UBC computer science students, along with psychology professor Peter Graf, and Barbara Purves, a clinical professor at the UBC School of Audiology and Speech Sciences with more than 30 years of experience helping people with aphasia.

The group wanted to understand the specific effects the condition had on Borg's ability to function. McGrenere, Moffatt and Purves flew to San Francisco to meet Borg and began investigating preliminary designs and potential applications.
Despite her failing health, Borg showed an enthusiasm for the project that all three women remember fondly.

"Anita was really inspired to use her condition in a way that could help other people, even knowing that she probably wasn't going to see the benefits of most of this work," McGrenere says.

But Borg also had specific needs that she managed to vocalize for the research team.

"Anita wanted to maintain an active schedule and she increasingly had to rely on family members to help manage her schedule and that's not what she wanted," says Moffatt. "She had very real needs so it was easy to envision how the technology could fit in -- how it could help."

Back in Vancouver, the team began working with existing technology in the form of an IPAQ pocket PC running with the Windows CE operating system. Their goal was to develop a device that would help Borg and others with aphasia maintain their independence in carrying out small daily life tasks.

Purves estimates that there are approximately 100,000 Canadians with aphasia -- about the same number as suffer from Parkinson's disease. She says the biggest frustration for those affected is the impairment of their ability to communicate with words and writing and to some extent, with gesture and drawing, and with it the impairment of their ability to communicate who they are and what they are feeling.

"Aphasia affects people in different ways but the thing that is common is that they're not unable to think, they just can't get their thoughts out, and they also have difficulty taking information in," Purves explains. This makes simple activities like jotting down a doctor's appointment or remembering where to meet a friend for dinner very difficult.

With help from other team members, Moffatt and McGrenere have developed a prototype for a daily planner program that runs on a hand-held computer (much like a Palm Pilot). It is designed so that people who have lost their ability to recognize words or write them down can record meetings and appointments using a combination of images and sounds and some text.

One of the team's big challenges has been to understand if people with aphasia will be able to use the planner they've designed. Through the BC Aphasia Centre and local stroke clubs in Vancouver, as well as the Life Enhancement Aphasia Program in Victoria, they have enlisted the help of a group of people living with the condition to assess the prototype and incorporate their ideas on how to improve it. Moffatt says the support and enthusiasm from the local aphasia community has been overwhelming.

Sadly, Anita Borg passed away on April 6, 2003 from brain cancer at the age of 54. The institute she founded has since been renamed the Anita Borg Institute for Women in Technology.

But the UBC Aphasia Project is really just getting started. While Moffatt's master's thesis -- the genesis of the project -- is almost complete, there is still much work to be done on the prototype. There are also several other spin-off projects and case studies in progress. The team has recruited help from other collaborators, including Jeff Riley, an expert in assistive technology at Vancouver's G.F. Strong Rehab Centre, and they plan to continue working with B.C.'s aphasia community on new prototype technologies.

McGrenere thinks the project could continue for up to 10 years.

"We're definitely in the foothills," she says. "It's a matter of trying to uncover what the best platforms are for this kind of work. [There are] various PDAs, cell phones that can send images back and forth, tablets and a fair amount of mobile technology now.

What is clear is that Borg's vision of technology's potential to help people lives on in an energetic, imaginative group of researchers who were motivated by a remarkable woman.

Klawe says her friend would be thrilled at what the UBC aphasia team has accomplished in its first year.

"Her family members and doctor told me that the project brought her more joy than anything else in the last few months of her life."