The new Bank Street Occasional Paper Series #47—“Disabled Lives and Pandemic Lives: Stories of Human Precarity”—launched today to highlight how the viewpoints and life experiences of people living with disabilities can provide insight and strength for all of us living through a pandemic.
In the Q&A below, Carol Rogers-Shaw, Adjunct Professor, University of Dayton, and author of this issue’s feature paper, provides a closer look at some of the themes explored in this new publication. Through this issue, in which she narrates her own story of disability, Rogers-Shaw offers readers a fresh perspective on disability studies in education and suggests ways in which we can connect to and understand the potential of students with different abilities.
Q: The COVID-19 pandemic caused all of us to learn to live with precarity, which is something that many people with disabilities have always had to live with. Can you speak more about human precarity and its intersection in these very different experiences?
A: Precarity is the experience of life as unpredictable and hazardous where the path to the future is uncertain and perilous. Precarity is also encountered as a frightening loss of control. Despite my attempts to manage my Type 1 diabetes effectively, my body is not completely within my control. A bout of the flu can send me to the hospital, a precipitous elevation or drop in my glucose levels can require emergency treatment, and my life expectancy is shortened because of the unstable nature of my physical health. These factors make my life more precarious, more uncertain, more at risk, just as disabilities do for many others. As an individual with a disability, I often feel like I’m running out of time and fighting an uphill battle. While this has been a daily sensation throughout my life, I think it was a new experience for many during the pandemic. One of the most significant features of the pandemic was the loss of control people felt. We didn’t have the ability to control our workplace experiences or our social lives. The restrictions of the lockdown were out of our control, and we were surrounded by people dying from a dangerous, lethal disease that threatened our own lives despite what we tried to do to remain safe. The precarity was compounded for those with disabilities that impact their health and work/life circumstances. While there were many different pandemic experiences, there was a unity in the loss of control and increased risk of precarity.
Q: In your paper, you write that your experience with Type 1 diabetes feels “more like a disability than a disease.” Can you elaborate on the juxtaposition between the two?
A: The 2008 Americans with Disabilities Act Amendments Act (ADAAA) considers diabetes a disability, yet when I was first diagnosed with Type 1 diabetes, I definitely saw diabetes as a disease, and I carefully followed the doctor’s treatment plan. To me the disease was biological, but the disability surfaced in its psychological and social effects, in how I saw myself and how others saw me. For me, disability is very much about my interpersonal interactions and my inner being, although it’s also about the physicality of the disease. As a diabetic, I have come to understand what it is like to be disabled as I have come to realize I do not have a body that functions normally, and society views me as limited by illness. I’ve internalized the stigma of having a less-than-healthy body. As a diabetic, I’ve had to manage the physical manifestations of a disease, but I also had to adapt to a new sense of self. I had to deal with the contradictions between what I dreamed and what is possible, and the paradox that I could live with it, and I could die from it. Self-care for diabetics is unending. Insulin helps to manage glucose levels, but the constant demands of disease management turned diabetes into a disability for me. The relentlessness has shifted my perception from having a disease to having a disability. It isn’t like a cold or flu; it will never go away, and my life is different because of that truth.
Q: How can educators balance a strengths-based view of teaching and learning that recognizes the struggles those with disabilities face every day?
A: Profound Learning, considered within a lifelong formation framework (Kroth et al., 2022), is continually deepened through learner practices and attributes. Meaningful lives are created as one acquires knowledge, changes perspectives, builds relationships, and examines values (Carr-Chellman & Kroth, 2019; Kroth & Carr-Chellman, 2020). Applying the Theory of Profound Learning shifts one’s perspective away from a linear model of human abilities to a constellation represented as a starburst, with spokes to signify an individual’s capabilities; spokes of human potentiality can be short or long, narrow or wide, lightly tinted or dark depending upon how fully they have been developed. The spokes illustrate that individuals have unique “profoundabilities” (Rogers-Shaw et al., 2022) that may be unrecognized or undervalued. Rather than move along a continuum from disability toward a societal norm, the starburst acknowledges “divergent paths, unique contributions, varied standards of beauty, and access to awe” (Rogers-Shaw et al., 2022). Inclusivity then focuses on identifying potentiality and strengthening capabilities; the characteristics that lead to daily struggles for disabled individuals become sources of profoundabilities. Rather than applying disability labels to visual conceptualization at the expense of textual understanding, or a lengthy focus on minute details, or the retention of idiosyncratic information for example, these traits can be viewed as strengths. Adopting the starburst model will not deny the existence of disability nor attempt to direct a disabled learner toward an accepted norm; it will view these traits as unique capabilities that lead to living profoundly, meaningfully, richly, intentionally, and authentically whether disabled or not.
Q: What do you envision for the future of disability studies in education?
A: Scholars who work within the tenets of disability studies in education can encourage educators to question their initial impression of a student with a disability and whether that immediate reaction focuses on deficits or abilities and whether that construct is different than or similar to their perceptions of non-disabled students and themselves. A promising future in education demands that educators use self-reflection to see learners with disabilities as having the potential for leading lives that are as meaningful and rewarding as their own. I envision the increased development of a process of self-reflection that recognizes that everyone aspires to be seen as an individual with varied abilities, goals, and dreams. In this regard, individuals with disabilities are just like those without disabilities. Disability studies in education can continue to implement models like the starburst of human potentiality to move educators toward capacity-building that acknowledges not only norm-based competencies, but also those that are unique to disabled individuals and represent valuable contributions to our communities. In research, scholars of disability studies in education can place stories, not as supporting anecdotes, but as the focal point of illustrating innovative educational practices that appreciate and foster capacities that enable individuals to lead meaningful, profound lives. Trumpeting the profound potentiality which resides in all individuals is an important role for disabilities studies in education.
Carr-Chellman, D.J. & Kroth, M. (2019). Public School Teachers’ Experiences of Profound Learning. Studies in Adult Education and Learning. 25(3), 107-123.
Kroth, M., Carr-Chellman, D. J., & Rogers-Shaw, C. (2022). Formation as an organizing framework for the processes of lifelong learning. New Horizons in Adult Education and Human Resource Development. 34(1).
Kroth, M., & Carr-Chellman, D.J. (2020). Profound learning: An exploratory Delphi study. International Journal of Adult Education and Technology. 11(2). 14-23.
Rogers-Shaw, C., Carr-Chellman, D., & Kroth, M. (Spring 2022). Discussing profound disability and profoundability. [Paper presentation]. American Association of Adult and Continuing Education Conference, October 2021, Miramar, Florida.