Inspiring students with disabilities
to earn STEM doctoral degrees

‘Simple accommodations
can create a dramatic difference’

My colleague Karl Booksh and I are the organizers of an undergraduate research experience program that offers students with disabilities scientific internships, advice and connections with other students who face similar life circumstances. Last year, we advertised the program nationally and ran it for the first time in its full scope with eight students.

The program’s long-term goal is to increase the participation of students with disabilities in science, engineering, technology and math professions. It combines conventional aspects of undergraduate research programs with the added layer of forming a community willing to discuss specific themes shared by this particular group.

Each participating student worked for eight weeks with a research group and presented his or her work at the end of the summer. The student I mentored came with a large and very lovable service dog. The dog quickly became bored with the lab work, but the student and I had a lot of fun.

Getting the program off the ground

Karl and I started collaborating when I joined the department of chemistry in 2008, and we became good friends. We’d regularly chat after meetings to mend our discouragement over grant writing. During these conversations, Karl often described his mentoring activities with the community of scientists with disabilities and pondered out loud about what type of programs would be most effective to increase the participation of this community in STEM professions. I thought Karl’s ideas were genuinely creative, and I asked if I could participate.

In the next few months, Karl and I wrote several grant applications to fund this program and also a separate program focusing on graduate training. The next year, we initiated the undergraduate program on a small scale, with only a few participants, using funds from our respective National Science Foundation grants. Subsequently, we won a dedicated grant from the NSF that helped us launch the full program this past summer.

‘Learning the ropes’

Part of the NSF grant supported special accommodations, most of which were easy to anticipate ahead of time, such as the use of an American Sign Language interpreter  and the construction of a small platform to wheel our friendly service dog, who stayed in a cage, in and out of the lab. However, some accommodations we hadn’t initially thought about, like using an interpreter to describe the surroundings for the visually impaired during visits to museums and reducing environmental noise and dimming lights for students on the neurobiological spectrum. Luckily, the students had much patience for us as we were learning the ropes.

Simple accommodations can create a dramatic difference: meeting a student ahead of the program to familiarize him or her with the lab, covering travel expenses for a parent to help a student settle in, asking the student what information to share with group members. Some of the most frequent requests we had were uncomplicated: securing single-occupancy rooms to allow for down time or providing direct contact with housing services.

Ultimately, the main challenge was no different than that encountered with any student we mentor: how to make research an educational and enjoyable experience given the student’s personality and interests.

Group sessions

in group meetings that concentrated on preparation for graduate school and how physical and learning disabilities may influence this choice.

Personally, my main apprehension involved group dynamics. Why would a group of strangers discuss personal questions of identity? Would discussions about disclosure and the definition of students with disabilities as a community be considered an intrusion? Would our students wish to share their experiences with us all? Would our group sessions feel contrived?

Despite my concerns, the group seemed to bond almost instantly. Participants were amazingly encouraging and treated each other much like brothers and sisters. Over time, they chose to disclose many personal experiences.

One group discussion that stood out was about disclosure: How and when should a disability be disclosed when applying to graduate school? How does disclosure factor into selecting a mentor or socializing with peer students?

Karl was instrumental in sharing insights from his many years of mentoring students with disabilities as well as his own personal experiences. Most students started out thinking they did not want their disabilities to define them or influence whether they were admitted into a graduate program. But many of us left thinking that the decision was more nuanced and complex than we originally perceived and tightly coupled with identity.

Should we not seek to be accepted for who we are? We are all part of a minority group, of a hierarchical power structure, and we all are concurrently insiders and outsiders. I am the outsider in our cohort, because I do not have a neurobiological or physical disability. Yet questions of inclusiveness, exclusiveness and self-identification lie at the heart of our program and are common to all of us. Being a part of this discussion still resonates with me.

Sharon Rozovsky Sharon Rozovsky is an assistant professor in the chemistry and biochemistry department at the University of Delaware.

‘An accumulation of societal and structural impediments’

Two years ago, Sharon Rozovsky and I started an undergraduate research program at the University of Delaware for chemistry and biochemistry students with disabilities. This unique program offers research, mentoring and community-building opportunities to outstanding scholars who happen to have a recognized disability that impacts one or more aspects of their lives.

The core of the program is an eight-week residency laboratory experience culminating with a presentation at the university undergraduate research poster day. During the two months, we discuss the intersection between disability and career. Topics include navigating graduate school, research expectancies, and strategies for disclosure of disabilities and requesting accommodations.

I was impressed with how quickly the students integrated into their respective laboratories and formed a mutual support network. For most of the students, this was their first experience in a real research laboratory and their first experience being encouraged to consider graduate school. Furthermore, it was their initial first-hand encounter with the notion that people with disabilities can easily surpass societal expectations that limit their accomplishments.

‘Far from typical’

Many view my path to the professoriate as typical, potentially ideal. Yet it was very different from the early career trajectories of most science, technology, engineering and math students with disabilities.

I did not grow up identifying as having a disability: I broke my neck the day after my 19th birthday while playing flag football during organized “reading day” activities before spring semester finals of my freshman year. I remember lying on the field, unable to feel my arms or legs, thinking, “Never let anybody see that you are hurt.”

Such an attitude prompted me to spend the first part of my career denying that I had a disability and led me to approach challenges as if they were personal attacks rather than impersonal societal constructs. I spent the next summer in rehab at Craig Hospital in Denver learning how to navigate the world from a wheelchair with only minimal use of my hands.

I returned to classes at the University of Alaska, Fairbanks, the next academic year and graduated with a bachelor’s — cum laude — in chemistry. My undergraduate research experience at UAF, with two published papers, led me to graduate school and a career as a university professor. I earned a doctorate from the University of Washington and completed a postdoctoral fellowship at the University of South Carolina before joining the faculty at Arizona State University.

Along the way, I was fortunate to find mentors who did not see my disability as a source of limitations. Instead, the faculty advisers saw my past successes as evidence of hard work, creativity and the ability to overcome obstacles. Consequently, honors and awards followed: National Science Foundation Graduate Research Fellowship Honorable Mention, American Chemical Society Graduate Fellowship, NSF Postdoctoral Fellowship, and Camille and Henry Dreyfus New Faculty Fellowship.

After I received tenure, I realized that my experience was far from typical for students with disabilities in STEM. While I saw many undergraduates identifying as having disabilities, I seldom noticed graduate students at national conferences or other institutions with visible disabilities. I did not hear tales of encouraging participation and inclusion.

Instead, their experience was of marginalization and the need to fight for access to a level playing field in each class. Some schools were worse than others, but nobody seemed to have had as ideal an experience as I did.

The few faculty members I knew who had progressed through school while identifying as having disabilities were all at smaller, less research-intensive institutions. To this day, I know of no other chemistry or biochemistry professor at an institution classified by the Carnegie Foundation as “very high research activity” who identified as having a disability as an undergraduate or graduate student.

‘There is no single cause’

National demographics bear out these observations.

People with disabilities comprise 13 percent of the U.S. noninstitutionalized population between 18 and 49 years old. Students with disabilities are interested in STEM at the same proportion as students without disabilities (21.7 percent to 23.1 percent for matriculating freshmen and 20.3 percent to 21.3 percent for those entering graduate school). Yet less than 2 percent of STEM doctoral degrees from U.S. institutions are earned by students with disabilities. This statistic has not changed since the passage of the Americans with Disabilities Act in 1991. There are so few STEM postdocs with disabilities that the NSF does not present these demographics.

I have come to believe that there is no single cause for the disproportionately low advanced-degree attainment in STEM for students with disabilities. Instead, there is an accumulation of societal and structural impediments that hinder progress for these students as a class.

Expectations for students with disabilities are lower; there is a relative lack of encouragement, mentoring and role models at all levels. Our belief in a meritocracy stigmatizes and prevents people from requesting needed accommodations, even when the accommodations are unrelated to the essential tasks at hand. Many institutions are still unprepared or unwilling to provide needed accommodations in a timely manner; students must anticipate, identify and negotiate accommodations anew each semester.

The availability of federal support for inclusion in STEM fields sends a strong message regarding the importance of broadening participation to institutions. The 2010 Federal Inventory of Funding shows a 20-fold difference between federal support targeted to underrepresented minorities in postsecondary STEM and that targeted to students with disabilities. (Perhaps not coincidentally, STEM doctoral attainment has been steadily increasing for blacks and Hispanics across the past 25-years while it has remained stagnant for students with disabilities.)

The Matthew Effect

Common assumptions by faculty members about the appropriate path to (and through) graduate school are biased against students with disabilities: students with disabilities are more likely to attend small undergraduate institutions, more likely to pursue their degrees part time, less likely to engage in undergraduate research, and less likely to be supported on a research assistantship awards in graduate school.

Furthermore, studies have shown that “solo status” (a feeling of isolation or being in a fishbowl when a person is the only member of an underrepresented group) and “stereotype threat” (feeling at risk of confirming the negative stereotypes of your underrepresented group) suppress the performance of underrepresented minorities. While people with disabilities in academia have not been explicitly studied, it is reasonable to assume such effects are in play.

The cumulative effect of such small societal and structural biases has been termed the Matthew Effect, inspired by the biblical passage regarding the rich getting richer and poor getting poorer. Research opportunities lead to local awards, which lead to more opportunities, which lead to larger awards and so forth. On the other hand, students who are impeded in their first few steps quickly fall behind and never regain an advantage in the race for recognition.

It is now en vogue to focus on just the negative side of the Matthew Effect and to contemplate how so-called microaggressions harm groups. But it is clear that the constant negotiating for accommodations, being split away from your peer group to receive accommodations and having to repeatedly defend your capabilities all take a toll on your ability to succeed and excel.

In a system where awards and honors are required to succeed, and given that these awards go to only the top 2 percent, it does not take much unintended bias to derail an exceptional candidate. However, I contend that the positive aspects of the Matthew Effect are personally empowering — each of us can reach out to one or two students a year and make a profound difference in career trajectories. Perhaps you will encourage a future colleague.

Karl Booksh Karl S. Booksh is a professor of chemistry and biochemistry at the University of Delaware.