Opening Up the Lab
Improving Access to Science for People with Disabilities
A crash, then all goes black. When you come to, you can't feel part of your body. You will never move normally again.
Paralysis from accidents or medical conditions affects millions of Americans, forever changing their daily lives and future plans.
For those who want to work in labs, the road is being smoothed and widened by Brad Duerstock, a researcher at Purdue University in West Lafayette, Indiana.
Duerstock is building and modifying scientific equipment, adjusting the physical layout of labs and creating an online networking site. His goal is to encourage more people with impaired mobility or limited vision to pursue careers in science, technology, engineering and math fields.
"Science can be pretty inhospitable to people with disabilities. But that doesn’t mean it's impossible," he says.
He speaks from experience. A quadriplegic since age 18 due to a spinal cord injury, Duerstock studies nerve injury and repair. Throughout his training and career, he's had to invent new ways to get the job done.
"It takes fortitude," he says. "You have to persevere. You have to be creative. You have to figure out your own solutions and make your own path."
A New Path
Duerstock grew up in Indiana in a family of teachers and principals. An excellent student interested in science and medicine—and a star member of his high school's swim team—he planned to become a physician.
About 3 months before graduation, during a swim practice at school, he had a diving accident.
"It happened so fast. I don't even remember hitting my head and breaking my neck," he says. "All of a sudden, I was floating face down and couldn't move my body."
Medically speaking, he had injured his spinal cord between the C4 and C5 vertebrae in his neck. He could no longer move his legs, arms, hands or wrists. He eventually recovered movement in his biceps and can rotate the lower portion of his right arm.
"I was a competitive swimmer for most of my life up to the accident. It was tough," he says. "But fortunately, I had other things to rely on. Academics were as important to me as athletics. When I couldn't compete athletically anymore, I competed academically."
He also had to learn new ways to get around, eat, dress, bathe, open doors, check e-mail, talk on the phone, take notes, study and take exams.
Throughout his hospitalization and rehabilitation, Duerstock kept up with his schoolwork and maintained his high grades.
"My teachers were amazing," he remembers. "They would send me my assignments and make photocopies of handouts while I was in the hospital, and some would visit regularly to privately tutor me."
This commitment paid off. The first time Duerstock left the hospital was to deliver his high school commencement speech—as valedictorian of his class.
After the ceremony, he had to go back to the hospital.
Despite his stellar academic record, some doors were still closed to him. He'd been appointed to West Point Military Academy, "but I quickly knew that wasn't going to happen," he says. West Point has strict physical requirements for its cadets.
So Duerstock decided to attend a nearby university, Purdue, which he knew was "famous for engineering." He switched his planned major from premed to an interdisciplinary engineering program focused on biomedical engineering.
At the time, "Purdue didn't have much in the way of accommodations," he remembers. "But they were working to comply [with the recently passed Americans with Disabilities Act of 1990] and wanted to find ways to accommodate me."
Now, as a faculty member at his alma mater more than 20 years later, he helps accommodate students with disabilities by creating assistive technology for use at home, school or work.
Duerstock first got a taste of research as a senior in college at Purdue's Center for Paralysis Research. He was fascinated by the work and went on to earn a Ph.D. in neuroscience. He now conducts his own research in areas ranging from neurotrauma to assistive technology.
"I like being able to decide what I want to research," he says. "I can look at whatever piques my interest. That independence appeals to me. It's very exciting."
A major focus of his research is on chronic (long-lasting) injuries to the spinal cord and central nervous system. What especially interests him is secondary injury.
Secondary injury is caused by the body's massive response to the initial trauma to nerves, bones and blood vessels. It includes a flood of white blood cells, inflammation, bleeding, tissue death from lack of oxygen and biochemically induced damage to nerve cells.
"There's a lot of things going on in secondary injury," Duerstock says. So many things, in fact, that "it's really hard to find the critical culprits."
Duerstock and his colleagues are hunting down these culprits using a variety of tactics. In one, they examine healthy and damaged nerve cells under a microscope to identify anatomical changes. Several years ago, they devised a way to computationally combine the images from many microscope slides to create a 3-D view of specific cells and molecules at the center of the spinal cord, where the most severe injuries occur.
They also look for molecules that cause or reveal secondary injury. Right now, they have their eyes on acrolein—the substance you smell when cooking oil burns. Acrolein increases dramatically after a spinal cord injury and fatally damages the nerves it touches. So it could be a major player in secondary injury.
In their search for treatments that lessen or repair nerve damage—or that stimulate the growth of new, healthy nerves—Duerstock and others are investigating a compound called polyethylene glycol or PEG, which is known to seal ruptured nerve cell membranes. In animal studies of spinal cord injury, PEG significantly reduced tissue damage and improved the animals' ability to move.
Duerstock realizes that his research could ultimately help not only the estimated 1.3 million people in the United States with spinal cord injuries, but also those with nerve damage from traumatic brain injury, diabetes, infections or neurodegenerative diseases like Alzheimer's and Parkinson's.
"The sense of discovery and the impact on others are big motivations for me," he says. "Being a researcher, you might have a broader impact on society than you would as a practicing physician."
A Wider Scope
Duerstock always strives to be self-sufficient, conducting experiments and gathering data himself rather than relying on others in the lab. Often, that means creating new tools—like the accessible microscope he calls AccessScope.
"The light microscope is one of the fundamental pieces of equipment used in a biomedical lab. Having that tool available is critically important," he says. "AccessScope has allowed me to work for hours independently."
Duerstock started building AccessScope when he was a postdoctoral researcher. Although designed for people with upper-limb mobility impairments like his, it also turned out to help people with limited vision.
"Microscopes require you to perch and lean forward to peer into the eyepieces," Duerstock explains. "That's not something easily achieved by a wheelchair user." Nor is it easy for people with vision loss, he adds.
So, instead of using eyepieces, AccessScope displays images on a computer screen, where they can easily be enlarged to help all types of users.
Users who can't see the instrument readouts can use third-party screenreading software to hear them.
Those with limited hand control due to paralysis, arthritis, carpal tunnel syndrome or other motor impairments can control an accessible slide loader to automatically place slides on the microscope stage.
They can then adjust the microscope using a variety of methods, including keyboard, mouse or trackball.
Duerstock is also working to make AccessScope available to others remotely through his networking site. He envisions users logging in through a Web browser and performing microscopy from anywhere.
As Duerstock points out, assistive technology frequently has broader benefits than originally intended.
"Often what can be considered good assistive technology simply means creating a device that excels in user design or usability," he says.
IAS—It's About Science
Duerstock's most ambitious and far-reaching project yet is the $2 million Institute for Accessible Science, or IAS.
Based at Purdue and begun in 2010, it includes a fully accessible lab and the IAShub.org online networking site.
The hub is designed for people interested in improving accessibility for those pursuing science careers. It offers something Duerstock says he didn't have right after his injury—connection, inspiration and support from like-minded people. It serves as a virtual community where students, scientists, parents and teachers can share their experiences with overcoming obstacles.
The hub includes helpful articles and Web sites, participant profiles, a discussion forum and a blog. It also lists funding ideas for scientists who bring students with disabilities into their labs.
"[Mentoring such students] might take a little more work, but the funding and technologies are out there," he says. "And inclusion really has long-term benefits, not only for the individual with a disability, but also in bringing a greater diversity of people into science who have different perspectives to offer. Science needs individuals from different backgrounds to look at problems in different ways."
To create the lab—dubbed the Accessible Biomedical Immersion Laboratory, or ABIL (sounds like "able")—Duerstock recruited an interdisciplinary team.
Engineers, ergonomics specialists, scientists, architectural designers and others renovated a standard "wet" lab to accommodate the needs and safety concerns of wheelchair users, people with vision loss and others who need to work in the lab.
Among ABIL's modifications:
. Wider doors and aisles so wheelchair users can enter and turn
around without knocking into delicate equipment.
. Lower lab benches for common tasks like pipetting, creating
slides and using microscopes.
. Lower, shallower sinks so people in wheelchairs can see and
reach to the bottom.
. Faucets mounted on the side rather than the back of sinks so
they are easier to reach. Ditto for the spray nozzle and
distilled water dispenser.
. Easy-to-flip levers instead of round knobs that are harder to
. Emergency shower controls and eye wash centers adjusted for
wheelchair users and easier for people with visual
impairments to locate.
Other issues are harder to address.
"Wheelchair users can't back away from a chemical spill easily or quickly," Duerstock points out. "Plus, you have a lap." Spills into the lap can go unnoticed for a while if you've lost feeling in your legs.
ABIL's first big test will come from a group of undergraduate students with mobility or vision limitations. Up to six students will use the lab and devise some of their own modifications while collaborating on research projects with Purdue scientists.
At the time of this writing, the students hadn't arrived yet. To find out what they had to say about their experience at ABIL, check online at http://publications.nigms.nih.gov/findings.
Bringing Lessons Home
Duerstock hasn't brought architectural innovations just to the lab. In 2001, he also designed his own accessible home.
"Architectural design interests me a lot," says Duerstock. "Before using a wheelchair, I had never thought much about it. But afterwards, when everything became inaccessible to me, one of my earliest desires was to be able to control my environment—to create my own space."
He designed each aspect of the house—from the thickness of the carpet to the automatic openers on interior doors—to make his life easier and more efficient.
He lives in the home with his wife, Li Hwa, and their dog, Luke, and cat, Xiao Hei.
Luke, a yellow Labrador retriever, is another sort of assistive technology. Duerstock got him several years ago from the Indiana Canine Assistant Network, an organization that arranges for prison inmates to train assistive dogs and then matches the dogs with owners.
For Duerstock, Luke is a big help opening sliding doors (he tugs on a rope tied around the handle), carrying things and picking up objects Duerstock drops.
"That used to be a big frustration—if I dropped my pen on the floor, it might as well have been on the moon, because I wasn't going to get it unless I had some assistance," says Duerstock.
In return, Duerstock devised some creative ways to give Luke the attention dogs crave. He plays fetch with Luke using a remote-controlled ball thrower, and he modified a candy dispenser to dole out kibble treats.
Occasionally, he brings Luke to work for extra petting—although he has to be careful, because the lab is not yet accessible for dogs with uncontrollably wagging tails.
While Duerstock doesn't know if there will be a cure for spinal cord injury and paralysis in his lifetime, he does hope to advance the field.
In the meantime, his assistive technology innovations and leadership of the IAS promise to make it easier for people with disabilities to work in labs and make discoveries of their own.
"I like knowing that what I do can ultimately impact others," Duerstock says. "That is very satisfying to me. I'd like to think that after I leave the world, I've improved it in some small way."
Catherine Hall's Blog
Catherine Hall is a 25-year-old junior studying food science and nutrition at the University of Maine. This past summer, she worked as a researcher at Purdue University, which modified a lab to make it accessible for scientists with disabilities. Hall posted a blog about her experience working with cultured cells and how she overcame challenges posed by her limited vision.
The blog posts below are excerpted from her complete blog (no longer available) without editorial corrections. You can see her talk about her experience in this video.
June 4-June 9: The First Week (posted June 23, 2012)
"The first week here at Purdue was both exciting and a bit of a shock.[Brienna, the graduate student I'm working with,] told me about the research I would be doing this summer, then took me over to see the lab. I got my own lab notebook (it has my name on it and everything), and found out that I would be doing research on how vitamin D affects insulin resistance. The idea is that vitamin D may actually be able to reverse insulin resistance in cells, but we also want to know if it can keep normal cells from developing insulin resistance in the first place. I've been learning how to do cell culture (and that includes using a sterile technique - not easy), and how to do western blots. Lots and lots of western blots.The biggest problem at this point was that I couldn't use the microscope because it hadn't been hooked up to a camera yet.Three days of people from the IAS and tech support woking on the problem finally got it fixed, though. It felt so good to be able to use the microscope by myself! ... All in all, the first week was exciting. Bring on Week Two!"
June 10-June 16: Week Two (posted June 25, 2012)
"This was another week of getting used to how things work in the lab and learning how to cope with some of the difficulties my vision brings to working in a lab. This week was figuring out how to fill the little wells in the gel when we do a Western Blot. That was a hard question because it's not like modifying the microscope - the problem was that there is literally no contrast between the clear gel, the clear plastic holding the gel, and the clear buffer covering the gel. This was not a problem that could be solved in just one week, so you'll have to wait for the next post to find out how we finally fixed it.Now, Saturday, June 16 was the highlight of this week. Because I came with the Institute for Accessible Science, I got to fly with one of the pilots from their ABLE Flight program. ABLE Flight helps people with physical disablilites get their pilot's license. Since I don't know anything about flying, the pilot did all the work and I just sat in the back and took tons of pictures. It was so cool! .Well, that concludes Week Two. Have a good night, everyone!"
June 17-June 22: Week Three (posted July 4, 2012)
"The next day was the start of another work week, and while I wasn't crazy about having to get up early, I was starting to really enjoy the work. As I've gotten more comfortable with pipetting, I've really started to like what I'm doing. We finally figured out a way for me to be able to do a western blot all on my own, too. Dr. Mendryssa actually came up with the idea - put dye in the wells. When she said that, both Brienna and I couldn't believe we hadn't thought to try that. Since the wells are already full of running buffer when we put the samples in, a little dye in there isn't going to make any difference! Between that and the book lights Lisa got me, it's almost easy to load the gel - almost. It's really not an easy process for anyone, but it feels so good to be able to do it myself. I'm really getting a lot more confident in the lab, and that is a wonderful feeling. Grad school may be for me after all."
June 25-30: Week Four (posted July 18, 2012)
"This was a pretty calm week in terms of research. My cells continued to grow, and I continued to change the media and split them as necessary. I did have one scare with them, though. I saw something under the microscope that concerned me greatly - this big, black, round thing with a bright white center was floating in the media. When Brienna and Winnie looked at it, they saw a fiber floating, but said it was nothing to be concerned about. Near the end of the week, I saw it again, and pointed it out to Brienna. When she finally saw what I had been talking about, she saw why I had been concerned, but upon closer inspection, came to the conclusion that it was nothing more than a bubble. Yes, I had an infestation of bubbles! Talk about a sigh of relief! The camera on the microscope is fantastic since it allows me to actually use the microscope, but sometimes the fact that it is in black and white causes some confusion."
July 1-July 7: Week Five (posted July 23, 2012)
"I had to start differentiating my cells.It really isn't complicated - just change the media from normal media to differentiation media, but it's somewhat time-sensitive. You can't start differentiating in the morning if you want to harvest in the evening.On Friday, I treated my cells, and on Saturday I spent most of the day in lab harvesting them. Brienna stayed with me in case I had trouble since it was my first time harvesting cells. It actually went pretty well, and I started to get faster by the end. It felt so good to have all of my cells harvested and to have all of my samples in the freezer waiting for me to use. Another great week ended that day, and the heat would end soon, too."
July 8-Juy 14: Week Six (posted July 24, 2012)
"On Monday I did a lot of pipetting to get ready for the Western Blot I would run on Tuesday. I did the majority of that process on my own, with Brienna next to me for guidance, but I did the actual test. It felt really good to be able to do it, especially since it's not something I will likely do as part of my undergrad work and is rather difficult. I realized that I'm actually really looking forward to my Chemistry classes this semester. It feels so good to feel like I know what's going on and will know something that the rest of my classmates won't know when I get back to school."
July 15-21: Week Seven (posted July 31, 2012)
"On Sunday, as much as I really wanted to sleep after getting back so late the night before, I had to go into the lab to treat my cells. It was going to be a long day since I had to start at 10 and wouldn't be done until 1:30, with no real break. I had 36 plates of cells to treat - that was fun. I probably would have finished sooner, but changing the time of treatment automatically changes the time of harvest, and I need all the time I can get to harvest the cells since I'm rather slow at it.Lab this week was a bit of a roller coaster of activity. Since I couldn't do much with my cells until Tuesday, I spent Monday working on my poster and presentation, though I couldn't get too far without results. Tuesday was crazy busy. I had to harvest all 36 plates of cells, and pipet the samples for the Western Blot I would do later. It was such a long day! Thursday and Friday was when I did the actual Western Blot - well, when Brienna and I did the Western Blots. We ran 8 gels in one day. Take my advice and never do that. It made for a very long day and we were so tired by the end. It was worth it to get the results, though."
DO-IT for Science
Performing bypass surgery using sheep hearts. Touring Microsoft's headquarters. Working in a forensics lab.
High school students in the DO-IT Scholars program do these things and more during a 2-week sneak peek of college life at the University of Washington in Seattle.
DO-IT Scholars is a college-prep program in Washington state for students interested in careers in science, technology, engineering or math. But it's also much more.
DO-IT stands for Disabilities, Opportunities, Internetworking, and Technology. As you'll learn from the many videos posted on its site (http://www.uw.edu/doit ), DO-IT Scholars describe it using words like fun, connection, learning and independence.
DO-IT Scholars have vision, hearing or mobility impairment; cerebral palsy; autism; or some other disability.
The 3-year program provides computer hardware and software, including any necessary assistive devices. It trains scholars to use technology to accomplish things they might never have thought possible.
The program hooks its participants into a broad, supportive and empowered network of other students with disabilities. It nurtures leadership skills, self-advocacy and lifelong friendships.
Many alumni continue to be involved in the program years after they've graduated by serving as mentors for younger scholars.
The DO-IT Scholars program began in 1993. It's been so successful that programs in Japan and South Korea have used it as a model for some of their own activities. —Alisa Zapp Machalek