Case Study: David
I’m a graduate student in electrical engineering. I work within an NSF-funded Engineering Research Center (ERC), primarily on sensorimotor brain computer interfaces in the rodent model, studying the effects of electrical stimulation on the brain to evoke sensory percepts. Eventually I plan on working in an industry job with biomedical devices or data science related to the health workspace.
I have been interested in brain-computer interface for about 8 years, after reading an article on the “Bionic Man” in the Institute of Electrical and Electronics Engineers magazine. My research project centered on designing stimulation patterns to relay useable information to the brain. I experimented with several different stimulation patterns and structured my tests to reveal sensitivities in the sensorimotor cortex to electrical stimulation.
I was diagnosed with Posterior Orthostatic Tachycardia Syndrome (POTs), Median Arcuate Ligament Syndrome, and suspected Ehlos-Danlos hypermobility syndrome. I recently had corrective surgery for MALS condition, which caused severe malnutrition, abdominal pain, epigastric pain, drug resistant migraines, unrelenting nausea, and chest pain for nearly 10 years. I’m currently in physical therapy, and trying several different types of medication to mitigate the symptoms of POTS (racing heart rate, high blood pressure, lightheadedness, dizziness, brain fog, extreme fatigue, and difficulty managing stress). The results of the symptoms make it very difficult to have enough energy to work full time. Fortunately, I’m expected to recover nearly completely after treatment is complete.
I have learned a lot about managing expectations of myself as my condition worsened and through the corrective surgery. It has been really frustrating to not be able to do things I used to do easily. I learned to be patient with myself throughout the healing and recovery from surgery and to take pride in the little bit I accomplished each day. Having the perspective of comparing my current situation to the worst part of the illness, rather than comparing myself to others has helped me remember that I really am moving forward.
As a graduate fellow, I used an ERC laptop that enabled me to work remotely, perform data analysis, write papers, and coordinate with other members helping with my experiments. My ERC also helped set me up with speech-to-text services to try out, so I could continue writing when I didn’t have the energy to type or when I was bed ridden. These options enabled me to continue my work, even when it was severely difficult.
As an organization, my ERC has done an outstanding job creating a culture of celebrating us with disabilities and championing ways to increase our quality of life. Rather than treating us as “broken” or “in need of fixing,” formats such as the End User Roundtable discussions make it clear that our ideas and input are important. While my disability isn’t as severe as many, I felt valued, welcomed, and supported when I began telling people about my illness.
I would advise engineering departments and faculty to not treat students with disabilities differently in public or single them out, but be eager to accommodate if they come to you with concerns. When I was upfront upfront about my challenges and my plans to overcome them, I was often met with encouragement and support. For example, my advisor gave me plenty of space to work flexibly (when I felt well enough to come in) and even to rest halfway through the day so I didn’t collapse from exhaustion.