Inclusion of Students with Disabilities in the Lab

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Inclusion of Students with Disabilities in the Lab

 

Bradley Duerstock, Ph.D.
Institute for Accessible Science
Purdue University

 

 
Bradley Duerstock
Dr. Brad Duerstock is an associate professor of engineering practice in the Weldon School of Biomedical Engineering and School of Industrial Engineering at Purdue University. He is the Director of the Institute for Accessible Science (IAS), which promotes greater inclusion of persons with disabilities in science and engineering. Dr. Duerstock is a member of the Center for Paralysis Research (CPR) in the College of Veterinary Medicine where he holds a courtesy appointment. He received his bachelor’s degree in biomedical engineering and doctorate in neurobiology from Purdue. His research interests focus on restoring function to individuals with disabilities through the development of assistive technologies and conducting basic and applied research in central nervous system trauma. In 2010, he received the NIH Director’s Pathfinder Award.



Students with Disabilities in Science Higher Education
The benefits of diversity to scientific research are, of course, tangible and substantial. This is a fact accepted by NIH, NSF, NASA and other federal agencies. Unfortunately, the contribution of students with disabilities toward the goal of greater diversity is still a relatively nascent idea. Like other underrepresented groups, students with disabilities had to demand access to higher education. Because of the Rehabilitation Act of 1973 and Americans with Disabilities Act of 1990 (ADA), public and private higher education institutions cannot discriminate against students with disabilities and must provide services to accommodate their educational needs. Some institutions embraced this new reality, others attempted to comply through the least amount of effort, and then some were sued and their examples have become case law. My hope, as faculty researchers, is that we will aspire to the former aim.

Up until now, higher education in science, technology, engineering and mathematics (STEM) has not had too much pressure to accommodate students with disabilities in their curriculum and research labs. Sure the laboratory classroom is accessible to wheelchairs and no science teacher is going to kick out a student who is blind or deaf. But are these students able to use the classroom light microscope by themselves, dissect frogs, mix reagents, determine fruit fly eye colors, and the host of other practical science experiments that are expected of science students? Curricular access, not physical barriers, is now at the forefront of challenges to the inclusion of students with disabilities in STEM.

The demand for change is coming though. No, there is no new legislation that I am aware of mandating greater STEM curricular accessibility standards for students with disabilities. Instead, there is a generation of students with disabilities, mainstreamed in regular middle and high school classrooms, who received accommodations, are used to a certain level of universal design in learning environments, and had institutional educational program (IEP) plans that followed their education. This generation is matriculating into higher education expecting these same accommodations. It is a matter of time before they expect graduate education to be as welcoming. How does one navigate these waters?

Personal Perspectives
As an undergraduate student in a power wheelchair entering engineering at Purdue University in 1990, I was fortunate that the ADA was in force. However, the emphasis was clearly on quickly becoming ADA compliant. There was only one handicap-accessible dormitory room near a bathroom with a roll-in shower at that time and just enough curb cuts for me to make it to my classes, maybe not via the most direct path but possible. There was no public transportation and rarely could I enter through the front entrance of one of Purdue’s academic buildings. However, each year there were noticeable improvements (more curb cuts, automatic door openers and ramps) and new buildings had to comply with ADA building standards. Though wonderful and much-needed, lowering these physical barriers is not likely going to significantly impact the number of students with disabilities to consider that lab-based STEM careers are accessible to them. Many students with disabilities, parents, teachers, and faculty researchers can only see the hurdles in science and engineering and not the opportunities.

The Challenge of STEM Inclusion
The mission of the Institute for Accessible Science (IAS) funded by the NIH Director’s Pathfinder Award is to promote the advancement of college students with disabilities in STEM, assisting them to continue on to graduate or professional schools and eventually careers in STEM. According to the NSF’s Report on Women, Minorities, and Persons with Disabilities in Science and Engineering, approximately 15% of undergraduates with disabilities enrolled in STEM fields of study, which is comparable to their classmates without disabilities. Unfortunately, the proportion of students with disabilities graduating and continuing on to graduate or professional schools in STEM decreased considerably compared with their nondisabled peers. Thus, a significant bottleneck occurs at the numbers of master’s students and doctorates with disabilities and consequently, scientists and engineers with disabilities being produced.

There are many different programs that we at the IAS and others have run to assist students with disabilities in pursuing graduate education in STEM. We have focused on helping those in the lab-based life sciences, which require considerable “hands-on” learning experiences. As a new graduate student in neuroscience my major concern was how I was going to perform research lab tasks. As an undergraduate in lab courses, I usually observed or recorded data while the other students in my lab group or my lab assistant performed the practical experimentation. As a grad student, I wanted to work as independently as possible. Though I might be able to hire a lab assistant or work with another student, I realized that without practical experiences I was not getting the nuances of the subject matter or fully understanding technical procedures as well as my nondisabled classmates. This affected my grades, and it was quite a struggle the first two years. I doubted whether grad school was possible.

Right Recipe for Student Success?
Fortunately my graduate advisor, Dr. Richard Borgens, was very patient and willing to work with me to find the right research project within the mission of the lab. As director of the Center for Paralysis Research, he helped me start my graduate career in a large research lab that was both physically and socially accommodating and typically well-funded. In a recent survey of Purdue life sciences and biochemistry faculty, Dr. Susan Mendrysa of the IAS found that senior faculty researchers with actively funded labs were most willing to accept a graduate student with a disability. Factors that presumably played a part in researchers’ acceptance were being tenured, a long track record of getting federal grants, and a well-staffed lab with hierarchical training involving postdocs, technicians, and other students. This was the situation where I serendipitously started my graduate studies, which likely played a big part in my success.

Unfortunately, I have met undergraduate and graduate students that were not so lucky. In one instance, being paired with a tenure-track faculty member resulted in that graduate student with a disability being discouraged by not living up to the expectations of the mentor while not having the guidance of knowing what to do to turn things around. Ultimately, the student left the program. The junior faculty researcher likely had no prior experience working with students with disabilities, was ill-equipped in accommodating this student or where to find help, and was under typical tenure-track pressure to produce results quickly. In fact, most of the survey respondents stated they were favorable to the idea of students with disabilities joining their labs, but only if they received assistance. This is a reasonable request since students with disabilities will likely need accommodations of some sort, including a longer time to graduate, assistive technologies (AT) to perform lab tasks, or lab assistant support.

Accommodating a Student with a Disability in a Lab
There is, of course, no single solution for determining what mix of accommodations is necessary for a student with a disability. Even with students without disabilities, some need intensive one-on-one mentoring and others work fine on their own with little oversight. I have found that having prior research lab experiences, necessary physical accommodations, and student guidance and support (or the 3 E’s - Experiences, Equipment, and Enrichment) can significantly help students with disabilities.

When I was a senior, I was able to earn course credit working at the Center for Paralysis Research, which primarily conducts biomedical lab research using in vitro and in vivo models. I was severely limited in what type of manual lab tasks I could perform, but I was able to experience lab research first-hand and dispel some of the unknowns for me. During the past two summers, the IAS has organized summer undergraduate research fellowships (SURF) for students with disabilities. Similar to other SURF programs, students with disabilities were placed in research labs across Purdue focusing on such areas as pharmacology, cancer biology, microbiology, biomedical engineering, and nutrition.

At the beginning of these programs, there is naturally some discussion on how the SURF student will be able to perform the requisite lab tasks that specific labs typically perform. Most of the SURF faculty mentors never had a student with a disability in their labs before. Likewise, this might be the first time the student stepped into a lab. Due to the short timeframe of the SURF internship, the IAS provided accommodation support to facilitate productivity as quickly as possible. Though we have specialized lab AT that we often loan, most of the physical accommodations SURF students require are commonly available through a university’s Disability Office, such as braille or tactile printouts of research papers and other documents, braille labels on lab equipment, or captioning or audio amplification during lab meetings and seminars. However, technical solutions for operating or interpreting data from lab equipment are necessary. A low-tech solution for a student with very limited field of view and low visual acuity to perform Western blots only required the use of colored dyes and external light sources to improve visibility. Routine lab equipment like a video camera mounted to a light microscope has helped students with visual and mobility impairments to view specimens without needing to use the microscope eyepieces. We have developed a high-tech, motorized research microscope with automatic slide loader and motorized stage to enable quadriplegics and low vision users to perform image analysis, morphometry, and 3-D computer reconstructions of tissues from serial histological sections without requiring assistance. Though this is expensive equipment, it was purchased through grant funds and allowed me to independently collect and analyze research data and draw conclusions - key activities of scientific inquiry. This equipment also provided me a practical understanding of light microscopy that I had not had before. Both NIH and NSF provide supplemental awards to fund AT and other lab equipment to assist students and scientists with disabilities. Senior engineering design teams may also help in solving specific lab barriers for students with disabilities. The IAShub.org also provides solutions.

Is It Worth It?
There are certainly limitations of students with disabilities, but that does not mean they cannot be productive members of your lab or contribute greatly to scientific endeavors. One must simply look at the accomplishments of Isaac Newton, Stephen Hawking, John Nash, Alexander Graham Bell, or Johannes Kepler, who are known to have various disabilities throughout their scientific careers. Such notable examples aside, I find the simple fact that two of our recent SURF students have been asked to continue working in their respective research labs after the program as confirmation that the merits of students with disabilities may be initially overlooked but are quickly realized if given the opportunity.

Final considerations when accepting a student with a disability to your lab is to be open to adapt the method of scientific inquiry to the strength of the student. I believe good mentors already do that with every student. There is an understandable tendency to hire one’s concept of the ideal graduate student, judged by what school they attended, the reputation of their department, GPA, or other factors. A student with a disability may not fit that ideal. Perhaps that is another reason why senior faculty are more willing to “take a chance” on accepting a student with a disability, because they are willing to explore the unknown. Personally working with students with disabilities different from my own has challenged me to rethink how to design experiments. Just because I typically look at solving a problem a certain way does not mean that it is the best way. I think that one of the greatest benefits of working with a student with a disability is to be able to look at a problem from a different perspective.



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Comments:

Issues raised by this article are very timely as our society grapples with the reality of increasing numbers of veterans trying to access college and possibly graduate school. I have a disabled veteran in my lab that needs a special ergonomics chair but has no other major physical barrier. However, she feels somewhat isolated because of her unique experiences with peer soldiers suffering from PTSD and depression. Luckily she is thriving and embracing civilian life in the unique auspices of our graduate culture. She is attempting to garner support for increased sensitivity to veterans (especially disabled ones) and for better access to educational opportunities. As stated in the article this diversity is welcomed even at institutions where the primary focus has been on underrepresented ethnic minorities. From my perspective having a disabled student in the lab has enriched our workplace and deepened our commitment to the study of military-relevant disorders of anxiety and stress. Thank you for this very informative article!
Margarita Curras-Collazo
University of California, Riverside

This article by Dr. Duerstock is provoking and informative. Raising awareness of the individual’s special needs is only the beginning of the transformation that is actively taking place in the scientific field. Inclusion, recruitment, retention and promotion of women and underrepresented minorities have received increasing attention. But diversification of the workplace to include those with disabilities in an environment that is sometimes extremely taxing and demanding (even for those considered fit) remains a goal in need of fulfillment. The examples and suggestions of relatively simple approaches to enhance the capabilities of an individual to integrate themselves into the laboratory are useful. This is particularly important in those situations in which a trainee or team member enters a lab without having full awareness of physical requirements necessary to perform a task. This can be true not only for the individual, but for the PI that recruits a trainee not knowing that a certain task may prove extremely challenging due to an existing disability. Secure funding and tenure in the part of the PI are factors that can facilitate adaptation of the environment for the special needs of the individual. However, the environment of the department or institution can also contribute to enhancing the experience and providing additional support to increase the chance for success. Just simply recognizing the existence of solutions that can be put in place should alleviate concerns and increase the willingness of those in more advanced stages of their careers to support trainees with disabilities. Knowledge and information of successful approaches should be part of our constant discussion in order to promote a more inclusive and diverse scientific workforce. Thanks for bringing this issue to our attention in such a candid and transparent approach! You have given me some good ideas to pursue!
Patricia E. Molina
LSUHSC, New Orleans

The article is good and it would raise a lot of discussion desperately needed to increase awareness in this topic.
Nildris Cruz Diaz
University of Puerto Rico

Dr. Duerstock’s article is enlightening and thought-provoking for those of us who want to encourage students with disabilities to work in our laboratories, but have little experience in how to make the laboratory environment and our laboratory practices as accessible and welcoming as they can be. My campus has a center with various resources and staff to assist in instruction of students with disabilities, but the specific issues covered by Dr. Duerstock in his article regarding STEM inclusion and trainees working in the laboratory are very useful additions to what I can get locally.  Thank you!
Hannah Carey
University of Wisconsin

Students with disabilities certainly teach lessons to others – one thing that stood out was the high degree of persistence and determination of one student in conducting what initially were very challenging experiments, despite her physical disabilities. I like to think that “can do” attitude rubs off on other students in the lab who are facing similar difficulties.
 
My initial thinking about having someone with disabilities in the lab is the potential disruptiveness to others’ abilities to get things done. Certainly turned out not to be the case in my lab. As pointed out by Dr. Duerstock, when someone has lived long with a disability, he or she learns to fit into society or culture in a way that makes his or her disability almost invisible from a practical viewpoint.
Thomas Pannabecker
University of Arizona


Questions:
Thank you, Dr. Duerstock, for this excellent article, which provides much-needed advice on a topic that is sensitive and difficult to navigate. Your insights, and especially examples from some of your personal experiences, are extremely helpful! I am certain that my question is also quite sensitive, but I am hoping you can offer your opinions: What are your thoughts on strategies to include individuals with psychological conditions or disorders in research? I think there is some overlap of challenges associated with psychological and physical disabilities, but in some cases these represent different issues.
Angela Grippo
Northern Illinois University

Reply:
Thank you! I am certainly more familiar with the inclusion of persons with physical impairments. However, the diversity of thought that individuals with psychological disabilities have historically brought to science has been profound. One must only think of John Nash and others. One valuable resource I would certainly recommend in this area is Dr. Kay Redfield Jamison, a clinical psychologist with bipolar disorder. Her book 'An Unquiet Mind' is an excellent insight into the struggles of a scientist with this particular disorder. I agree some of the challenges in accommodating individuals with some psychological conditions may be similar to those shared by persons with physical disabilities. For example, I conjecture, like those with physical disabilities, some individuals with psychological disabilities might possibly need more time to graduate or attain tenure due to relapses or adjusting to the right medication regimen. These situations are really no different than someone with relapsing-remitting multiple sclerosis or someone with rheumatoid arthritis that must maintain a delicate balance of antirheumatic drugs.
Brad Duerstock

This is an excellent and thought provoking article. Having had students in my laboratory with physical disabilities my own experience has been very positive. I have found that often these students are very determined and have already had to overcome obstacles to get to the next step. Compensation for physical issues (for example lack of fine motor skills or hand strength) has necessitated pushing the research project in perhaps a slightly different direction than originally envisaged by concentrating on different approaches and thinking ‘outside the box’. Oftentimes this has had unforeseen benefits and in many ways is no different than a student following a specific project because they ‘prefer’ say molecular techniques versus animal model approaches. I do think it is important however that administrators of graduate programs are aware and on-board to have allowances in place when chronic conditions can play havoc with a student’s timeline for graduation, and I wonder if Dr. Duerstock has any specific recommendations related to this issue?
Caroline Appleyard
Ponce School of Medicine and Health Sciences

Reply:
I totally agree. There have been several examples where using different experimental methods for pragmatic reasons (e.g., cost, lack of access to state-of-the-art technology, time limitations) has led to an innovative methods of investigation. I see overcoming limitations due to disability as simply another practical challenge. Time allowance is one of the most essential 'reasonable accommodations' that students with disabilities require. This can be tough for some to empathize, however the law is on the side of the individual with a disability. I think more departmental heads are realizing that graduating in four years or getting tenure in six years should not always to be set in stone. It is not just persons with disabilities that have delays in their schedules, it could also be due to pregnancy or taking an external fellowship. Fortunately, there are funding supplemental awards through NSF and NIH to help support students and scientists with disabilities to help offset expenses related to extra time and physical accommodations. The caveat is that sometimes the major advisor of the student with a disability must have an existing NSF or NIH award in order to qualify to request a supplemental award for this student. Though this helps the faculty researcher that has a student with a disability, but it doesn't really promote researchers to take on a student with a disability without long-term secured funding.
Brad Duerstock

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