Beautiful Subjects
By Steinberg Henry, Ph.D. Student in Educational Studies: Human Development and Learning
I am writing a dissertation on the experiences of adult learners using their active imaginations to reach for well-being and new ways of seeing. They are all blind and so am I.
As you can well imagine, the encounter between me as a researcher and them as participants or so-called subjects is both exciting and complex. It is exciting because they say real powerful things about experiences with blindness. Their stories are complex because though they’re categorized in research as subjects, they are vital to the sense-making of the whole sentence. Like words in that complete sentence, they are and have the right to be alive. In fact, they are neither subjects nor objects, but framers of unique bodies of knowledge touching the blindness phenomenon. I suggest that they be listened to. Here’s a sliver of what Nil and Liz shared with me.
At the base of some theorizing
Now Nil is a so-called subject, but here is what he answers when I asked him about when he began to give up the loss of sight mentality.
“I think that it's ongoing. you know…there are still moments if I'm honest with myself, that I miss it. But they are fewer and farther between now. So in the beginning it was difficult. Right? Well, primarily because I did not have the alternative skills of doing things differently.”
This so-called interview subject, through the resources drawn from his experiences, could reflect meaningfully on his particular phenomenon. In the words of Triplett et al. (2012), Nil did some “appropriate cognitive work” (p. 2), transcending the ‘intellectual ability’ stigma associated with blindness. Again, in the words of Triplett et al (2012), Nil had “cognitively resolved” his “struggle with the stressful event” (p. 5). The struggle continued even as he acquired new skills in braille, reading print, and using the cane to navigate and know his living space. “Fewer and farther between” indicates Nil’s accumulative knowledge and social competence skills – the so-called subject is resourceful.
The second participant in the creation of knowledge is Liz. Liz who is blind taught blind youths how to be mobile in and around their town. I asked Liz about the blind leading the blind.
“I've done it a lot, you know, ‘Hold on to my elbow, I'll help you get through the crowd,’ and we're both blind. The way that I look at it more now is like the blind helping that blind person navigates this world that isn't designed for us. So the blind do lead the blind because, um, you know, it's important to have that network of blind people around you. It's important to have people that you can reach out to and say, ‘Hey, you know, I'm having a really hard time using my cane. Could you give me some advice on how to do it?’”
The ”people that you can reach out to” and that “network” are critical. When both are set in motion, peopled by those sharing a phenomenon along the lines of what Bronfenbrenner (1977) calls “a nested arrangement of structures” (p. 5), a dynamic coherence can be experienced by those participating.
It is a world not “designed” for us. It is designed. So what was someone thinking? Oh, those blind should learn to see given what we’ve designed and provided. It is our sacred responsibility. Liz could be said to have shattered a way of thinking about disability. Those physically blind can lead those physically blind. Indeed, novel pathways of knowing may well be discovered. It is when the ignorant lead the ignorant that the trouble begins. So much for my beautiful subjects!
References
- Bronfenbrenner, U. (1977). Toward an experimental ecology of human development. American Psychologist, 32(7), 513-531. doi:10.1037/0003-066X.32.7.513
- Triplett, K. N., Tedeschi, R. G., Cann, A., Calhoun, L. G., & Reeve, C. L. (2012). Posttraumatic growth, meaning in life, and life satisfaction in response to trauma. Psychological Trauma: Theory, Research, Practice, and Policy, 4(4), 400. doi:10.1037/a0024204
Re-Imagining Work in the Post-Pandemic Era: An Arendtian Lens
By Xochitl Mendez, Ph.D. Student in Educational Studies
Originally published on March 29, 2022, for The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School. Reprinted by permission of the author.
The coronavirus pandemic changed the world in countless ways, and for a moment it challenged the pre-pandemic separation of—in Hannah Arendt’s terms—the Private and the Public. To Arendt, the Public is defined as the sole realm where a human can live in full, as a person integral and part of a community as an equal.1 Being human is only fully procurable by the presence that a person achieves when acting among others. Contrastingly, to Arendt, the Private is a shadowy space without sufficient worth to merit “being seen or heard” by others.2 The Private is also the place where toiling with the endless necessities of providing for one’s body resides.
The Covid-19 pandemic challenged this separation. As many people and their loved ones fell seriously ill, an overwhelming portion of our nation found themselves for the first time living a struggle that previously was familiar mainly to those who suffer from chronic medical conditions. Millions were locked down and marooned at home—a radically novel experience to many, yet one that is sadly commonplace to a considerable number of individuals who live with disability and illness every day. Large portions of the workforce found themselves restricted to working remotely—a reality habitual to individuals who lack access to the workplace. All of these experiences suddenly stopped being private experiences—they became critical concerns discussed by a citizenry of equals, worth “being seen or heard”3 by others, and demanding policy and political action.
An important reason, in my view, why society has been so slow in embracing the rights of individuals with disabilities and chronic conditions, as well as in making meaningful advances for their inclusion across the board, is precise because we as a society believe in preconceptions that assert that attending to one’s body, or dealing with its perceived limitations, must necessarily be relegated to the Private and not to be disclosed in the Public. Further, what lives in the Private is often the subject of doubt and is discounted with suspicion. For far too long, for example, maladies such as chronic fatigue, brain fog, and pain were seen with skepticism as ‘exaggerated,’ ‘made up,’ or ‘unexplained illnesses’ yet they gained legitimacy once long Covid inescapably made them a public concern.
The dichotomy between Private and Public—this hiding and showing to others—is especially fraught in the workplace. It is quite telling that so many members of the workforce report feeling that their efforts and labor remain unnoticed and want their work to ‘exist,’—to be seen and be recognized by others in Arendtian terms; to be assured that their toiling is productive; that they will leave something behind in the social world. Yet it is precisely invisibility that is ordinarily sought in the workplace when it comes to illness, disability, and chronic conditions.
Disclosing the extent of an illness, or what may be seen as an impediment, is usually an uncomfortable choice for the average worker. On the one hand, disclosure is often necessary to obtain needed accommodations and is also an appeal to understanding and flexibility. On the other hand, this disclosure can induce unjustified assumptions and discrimination. Presenting an impairment or even a difference—even one that can be easily accommodated or that bears no relationship to performing on the job—still makes the person, unfortunately in the eyes of many, ‘disabled’ and less productive.4 Even those who struggle with disabilities and illness may themselves internalize these biases, or defensively respond to them in others, and engage in “information control.”5 That is, choosing to not disclose, or at least attempt to minimize, the visibility of differences, illnesses, and disabilities. Taken to an extreme, in order to conform to pernicious expectations and constant prejudices, a person suffering from illness or disability may, to echo Arthur Frank, “act according to others’ cues of what they want from them, which is to disappear.”6
This social pressure to hide away differences and uncomfortable truths into this Private sphere is perhaps also one of the reasons why recognition is so difficult to attain for those who work (as indeed this is real work) to manage their disabilities and medical conditions as they strive to participate in the workplace and the world. Further, once socially classified as ‘in the private,’ the concerns and realities of people with disabilities are thus set aside—discounted as ‘private’ peripheral affairs, and not for the public to worry about. How then could experiences that are lived in ‘privacy’ lead to the concentration of will, effort, and resources needed to change deep-seated structures and institutions to be more equitable and inclusive?
I argue that the ‘needs’ of people who find themselves confronting disability and illness should indeed not be marginalized to the social Private, nor hidden in the workplace, as they are simply modes of the human condition, that is, resulting of a human body that requires care. These needs are not ‘special needs,’ but in reality, universal needs which should be seen as a condition of accepting the body and our own humanity in health and sickness and across its wide variation as it exists in the natural world and as it changes as we age.
Arendt observed that “the disappearance of prejudices simply means that we have lost the answers on which we ordinarily rely without even realizing they were originally answers to questions.”7 As we challenge and change the demarcations of the Private and the Public, the pre-pandemic question, ‘What is work supposed to look like?’ should be reformulated to how do we go about redefining work given the capabilities enabled by today’s technologies while we embrace the vulnerabilities that the body imposes on us? How can we reshape the Private and the Public to give recognition to alternate but no lesser modes of the human condition that include disability and illness, while respecting the varying needs of the individual for autonomy and confidentiality?
Redesigning work with these questions in mind promises to be a challenging yet rewarding exercise in personalization and in developing flexible best practices in the workplace given that each worker is unique in terms of needs and conditions—and different in their comfort levels of disclosure and wants for confidentiality. Nevertheless, this focus on a work culture aligned to the needs of workers with disabilities and chronic conditions—whether pandemic-related or not—can lead to innovations, experiments, and formative evaluations that will result in a better workplace and a better world. In Arendtian terms “work produces an objective world that constitutes our shared human reality”8 and work is what builds the “common ground that joins us into a community.”9 Improving work, and making it more accessible and equitable, is improving the world—something we can aim for as we learn and enact the lessons of the pandemic.
Notes
- Hannah Arendt, The Human Condition (Chicago: University of Chicago Press, 1958).
- Arendt, The Human Condition, 51.
- Arendt, The Human Condition, 51.
- Shelly Maciujec, “Unconscious Bias Towards People with Disabilities in the Workplace,” Ability Magazine, Accessed April 22, 2022, https://abilitymagazine.com/unconscious-bias-pwds-workplace/
- Kathy Charmaz and Dana Rosenfeld, “Reflections of the Body, Images of Self: Visibility and Invisibility in Chronic Illness and Disability,” in Body/Embodiment: Symbolic Interaction and the Sociology of the Body, ed. Dennis Waskul and Phillip Vannini (Aldershot, England: Ashgate, 2006), 35-49.
- Arthur W. Frank, At the Will of the Body: Reflections on Illness (New York: Houghton Mifflin, 2002), 127.
- Hannah Arendt, Between Past and Future: Eight Exercises in Political Thought (New York: Penguin, 2006), 171.
- Paul Voice, “Labour, Work, and Action,” in Hannah Arendt: Key Concepts, ed. Patrick Hayden (Abingdon, England: Routledge, 2014) 39.
- Voice, Labour, Work, and Action, 40.
We Deserve Dignity And Respect
By Kateri Collins, gradaute student in Expressive Arts Therapy, Clinical Mental Health Counseling
So, yes, I am disabled
But doesn’t mean you can degrade me
Doesn’t give you the right to judge me
Doesn’t give you the right to mock me
Doesn’t give you the right to reject me
Doesn’t give you the right to alienate me from society
I am a worthy individual
I am a smart individual
Better yet, I am brilliant
And you cannot take that away from me
Yes I am highly educated
Yes I wrote a highly popular thesis
And I am still disabled
Yes I might have to make various accommodations
But I refuse to be stopped
The world is my playground and will continue to explore and expand even with my challenges
Some days will be harder than others
But I refuse to give up
So stop looking at us like we are nothing
But rather with love and resilience
And that we are just as worthy as anyone else
Let us shine and be a part of a world that hopefully, one day will accept us for who we are.