Disabled in STEMM

Tell us about your disability

Dr Duerstock : I sustained a spinal cord injury when I was 18 years old due to a diving accident. That left me paralyzed pretty much from the shoulders down. That makes me a tetraplegic and so I use a motorized wheelchair to get around. And I have some movement in my upper limbs, but not a lot, so it’s hard for me to grasp things manually. But it does allow me to use a joystick to drive my wheelchair and do typing and things like that.

Did you ever doubt about getting into college?

Dr Duerstock: No. I always knew that I wanted to go to college, I mean, that was on my plan. And maybe I was naive to think that it would somehow work out, but that was my thinking. I did take a year off to recuperate from my injury, but I knew I wanted to start college. I was thinking about medicine at the time, but I knew that was going to be very difficult, at least that was my thought at the time. So that’s part of the reason why I chose engineering because I thought that was something I could also physically do.

Interviewer: Were there any accommodations that you could receive from the university at that time? I think it was the time that the ADA, the Americans with Disabilities Act, was passed, right?

Dr Duerstock : Yeah, in the United States that was a major piece of legislation to create accessibility across the United States in 1990. All institutions that serve the public, so really all universities, had to comply. Unfortunately, most of the private institutions, they weren’t well suited yet. They were still trying to reach compliance, whereas the public institutions, which is what Purdue is, already had initiated some of these accommodations, such as curb cuts on sidewalks and having dormitories that were accessible for someone like me. So that was a big reason for choosing Purdue as well because they already had some accommodations. And so we met with them, my parents and I were just looking at schools and decided that this was the better choice than some of the other schools that I was interested in but weren’t quite ready for accommodating someone like me, with my disability. So it was both a personal choice but also a very pragmatic choice which college I go to.

Have you ever had second thoughts about pursuing your career?

Dr Duerstock : Yeah, I think for me that was in graduate school when I was going to get my PHD, because I realized as an undergrad I was taking classes and I could get assistance from note takers or a lab assistant to take science courses. However, as a graduate student, I was required to do more research independently. Professors expect their graduate students to master maybe a particular piece of scientific equipment. For me, it was a microscope, which I used a lot for my thesis work. So, you take classes, certainly, but it’s the research part which I was struggling. And I guess there’s different ways of going about it, but, to me, I wanted to understand the equipment I was using. It was very experimental research that I was doing and without doing it hands-on, understanding the intricacies of the lab equipment and the experimental protocol which sometimes you have to change depending on the results you are finding—you really have to understand that on a practical level and that was difficult at first. So one of my first grants that I ever got, which actually was the first grant, was to develop an accessible microscope. I received this grant from the National Science Foundation in the US to develop a microscope that someone with my disability could use. I said, “Well, this would help a lot of people,” but I was really thinking, “How well could it help me do my research?” And fortunately, it helped me a lot, so I could do more of my research independently.

What helped you get through the graduate school?

Dr Duerstock : I was kind of fortunate as a graduate student to be in the lab, and I didn’t realize this, but my mentor, my advisor, he was very willing to have work with me. He didn’t have the solutions to tell me, “You should do this, you should do that,” but he was patient. It took me some time to understand what kind of research procedures I wanted to do for my thesis. And fortunately, he was well funded, which was important, but he was also very willing to work with me and to give me that time. And I had great colleagues, both graduate student peers as well as lab technicians, that were willing to help me. I didn’t realize at the time, but having that support system was very important.

Unfortunately, I’ve heard of other stories, talked to others, students that were in a lab that wasn’t so accommodating. They may be working with an assistant professor who needs to get a lot of research results very quickly in order to reach tenure, and so they demand a lot of results from their students very quickly. That’s a difficulty and I realize this is a problem not only for people with disabilities but other type of situations. Let’s say a woman who’s trying to start a family. She has gone through childcare and pregnancy and all those things, and it definitely can affect one’s work. So really having labs that can accommodate students’ different needs is very important.

Interviewer: Do you think that the culture in the science field is changing a little bit towards a better situation? Or do you think it’s taking more time than you would expect?

Dr Duerstock : That’s a great question. I’ve thought about this. I think it’s getting better, especially, as you see, more women and more underrepresented groups, people with disabilities are entering the STEM education. Definitely greater diversity in the STEM education is important, not only to get different perspectives on the research, but also to change the culture of it, like you said. That’s a good word. I think it is this idea that you can spend 12 hours a day in the lab and that’s your only focus, whereas that’s not life. People have other responsibilities. They have a disability they have to work with. They have a family. Some people are raising a child themselves. And it would be a shame that these individuals can’t contribute to the STEM fields simply because there’s this culture that really is arbitrary. So, I think we need to adjust practices to really accommodate the different needs of different individuals.

In what ways has your disability contributed to your research?

Dr Duerstock : As someone with a disability in the field of developing assistive technologies and rehab engineering, I certainly bring a perspective of everyday use. I understand such conditions as we’re doing study on autonomic dysreflexia. It’s a condition that not many people have heard of. It affects exclusively people with spinal cord injuries. But a lot of people think about, for instance, paralysis, and they’ll say, “OK, this person can't move. Let’s focus our research on getting them to move, be more ambulatory.” Yes, that’s important, but is that what affects me daily? Is that the most impactful? I get a wheelchair, I can get around. Movement is something that would be great to overcome, but there’s other areas that affect me more on the day-to-day, such as this autonomic dysreflexia, which is due to aberrant changes of the autonomic nervous system. I won’t go into a lot of detail, but thermal regulation, getting too hot, getting too cold, bowel bladder care, the lack of pain sensation, these are the things that, if you ask someone with a spinal cord injury, rank higher than being able to walk. And a lot of people without a disability might not realize that.

I’ll give you another example of individuals that were blind. They would receive information. Science is a very visual-focused field. Your figures are shown as pictures. A lot of the information received from scientific equipment is visually based. So they’re using other senses if they’re blind or have low vision. Now they’re looking at science in a different way, from maybe an auditory level, and so they’re perceiving information very different than how 95% of the rest of the science community gets information. There’s benefit there, that we’re not looking at the data the same way, but they’re perceiving it differently. And there’s been a lot of different examples that have been shown to be advantageous because we didn’t even realize that we were so committed to visual information that we’re missing this whole other modality of sensation.

Tell us about the Institute for Accessible Science

Dr Duerstock : It’s more of an initiative. It was something that was founded by me and other colleagues due to a grant we received from the National Institutes of Health. And it was looking at greater inclusion of people with disabilities in the STEM fields. What are the barriers, and we talked a little bit about accessibility. A lot of labs, if you go to a science lab, they're very crowded. And you’re afraid to turn around or it might knock over some expensive piece of equipment, because everything is packed in. Space is always a limitation in a scientific lab. So there’s space cum architectural access. And then there’s, with the microscope example, a barrier to use a piece of equipment. But there’s also other things that can be barriers to being successful as a career in the sciences, whether it’s a scientist or medical doctor or whatever field that person is interested in STEM-wise, such as getting opportunities to do internships. Because now you’re going to a whole new institution, whether it’s a hospital or a company, and they might not be very accessible. And so a lot of, I found, students with disabilities didn’t have great internships. They’ve shown to be very useful for all students to get that experience as an undergrad or maybe as a graduate student, to see what it’s like to work in industry. Mentoring also sometimes is not as well developed for people with disabilities. They might have questions or hurdles that they don’t have many mentors to help them with, to understand, “I have this disability. How do I overcome?” You know, going to anatomy class, if I’m blind, sometimes getting those answers are difficult. These are some of the issues we’ve been looking at through this Institute for Accessible Science.

What is the most essential trait for people with disability to achieve success in the STEM field?

Dr Duerstock : I’d say perseverance is probably the top of my list. Be able to work through problems, not being too discouraged when something doesn’t easily come around or you’re not getting feedback from others who don’t have the answers. Because what I was talking about my advisor being so great. He wasn’t great because he said, “I have the solution for you and this is going to work out great,” but he had the patience to say, “OK, I have confidence in you. I’ll help you as much as I can, but it’s ultimately up to the individual to be successful.” That's life.

And there’s a lot of physical requirements sometimes put into place, even just everyday jobs as picking up 30 pound weights. They say, “You have to pick up 30 pounds.” Why? Is that really important for the job? Maybe in some jobs it is, but in some jobs you mean I simply need to get something that is 30 pounds and put it over there. If that’s the problem, then there’s a lot of ways of getting something that weighs 30 pounds and getting it to another location. That doesn’t require physically picking it up. You can use a lot of devices or other means. So, I always question like, “What is the goal? Is the goal to be able to do a task? Or is the goal the results of that task?” And if the goal is the results of that task, then have an open mind on how that might be done very differently than the way it used to be done or how it’s typically being done.

The struggles are the same around the world and with a disability, no one has it perfected. So you’re not alone and there are solutions out there. So, just keep on trying. Do what you like to do, not because someone says, “This is very accessible” or “something you can do.” If you’re not passionate about it, then you’re not going to be successful. A lot of times I hear of people who like to work on cars using the wheelchair and they say, “You should use computers.” Maybe they don’t like to use computers a lot, they like to work on cars. There’s ways to do that. There are standing wheelchairs, for instance. I think someone is going to be more productive, doing what they’re passionate about.

Sometimes it is difficult to get others to understand that or to realize the potential you bring. So, build that circle of people that can help you, that believe in you. I think that’s very important because most people want to give you a chance, I found, most people want you to be successful. Sometimes it takes a little time to get them to see that potential, and so I would recommend really trying to utilize that tool.