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A Kind-of Blog by Rebekah Tanner


On Caregiving, Living and Loving Art, Learning & Resiliency, and Coming Close to Retirement

This is Blog #3; please click for: Links to earlier Blogs


“In matters of truth and justice, there is no difference between large and small problems, for issues concerning the treatment of people are all the same.” ~~ Albert Einstein

Phenomenology of Care

Originally written as a scholarship essay on January 5, 2016; Revised for this blog on November 14, 2016.

Close to the beginning of the Fall semester of 2015 in Dr. Terrance O’Brien’s Counseling Foundations class at the SUNY Oswego Metro Center, he suggested to the class that we go see the new Disney/Pixar film, Inside Out. He told us it was a kid’s movie, but on another level, it was a really good depiction of five basic emotions: joy, sadness, anger, fear and disgust. Several times after that, he repeated his recommendation and encouraged all the members of the class to see the film. On a quiet weekend, when I did not have too much homework, about mid-semester, my spouse and I went. It was so much fun, and yes, such a good examination of emotions, that she and I decided to put together a collage with an Inside Out theme and some other images and phrases, because part of the way her neurological disability manifests is that she sometimes has trouble articulating feelings. She also sometimes forgets to do some essential things – like drinking enough water, or eating slowly – and this made for an easy, fun way to put those reminders up where she could regularly see them, as an aid to her well-being. Over the next weeks we kept talking about the film. Then, on the day I went to do some shopping for the holidays, I bought a copy, both for her enjoyment and as a tool in the “box of tricks” I am building to have available going forward in my work both as a primary caregiver to my spouse, and as a Certified Interdisciplinary Trauma Specialist.

In class it had seemed to me that some of my fellow students were not so sure about Dr. O’Brien’s suggestion. However, having been a Children’s Librarian for the first 13 years of my 27-year long career as a librarian, I know that very often materials ostensibly produced for the juvenile audience have multilayered messaging. They are often potent stories which adults can benefit from, either as entertainment, or for their deeper meanings. So, when my spouse suggested that there was another Disney film I should take a look at, and it was going to be showing on television on Christmas Day, I listened to her. Because she is a (retired) ordained minister, the film had struck a theological cord in her. I think that is what she had wanted to share with me. I, however, saw an entirely different sub-text in the film – at least until we discussed it afterward. Through our mutual discussion, I easily came to see why she had that impression.

So, have you seen the 2014 Oscar Award winning film for Best Animated Feature Film, Big Hero 6? To my mind, it is the most perfect caregiver film, ever! Because care giving is both a major role in my life, and the work I am studying to prepare for, you can understand why my take-away was different from my spouse’s. In one sense, it is a good vs. evil super-hero film, and that is its most obvious and probably most juvenile aspect. However, in this film the guy you think is the good guy is not, and the one you think is the greedy, self-concerned one is not as evil as he at first appears to be. Beyond this, the unlikely super-heroes figure out pretty quickly that revenge and violence are not the way to create effective change. They learn to “look at it from a different angle” in order to “find their way out.” Pretty cool… a pacifist super-hero movie! But it is the messaging around care giving that I would like to explore a bit more thoroughly here.

Now, as wild an idea as it might seem, I would like to examine this film through the lens of Philosophy, in particular, from the point of view of Phenomenology, with some Ontology and Ethics thrown in for good measure. You see, before I came to study at SUNY Oswego I was looking into the possibility of an advanced degree in Philosophy, but as things go, at least right then, no place in the geography I was willing to extend myself within was teaching precisely what I was interested in studying beyond the B.A., which is Indigenous Ways of Knowing / Native American Philosophy. So, I contacted the (now retired) matriarch of the discipline, Dr. Anne S. Waters, who is editor and contributor to the only advanced textbook in this field, American Indian Thought: Philosophical Essays (2004, Blackwell). Since then, Dr. Waters and I have been engaged in an academically oriented e-mail conversation that has now been going on for well over 2 years. As you might suspect, Dr. Waters is first and foremost a Phenomenologist in her approach to Philosophy, both Continental and Native American. It has been under her mentorship that I have come to formulate my own outlook regarding Caregiver Services and to call the work I intend to engage in “A Phenomenology of Care.”

Without going into the entire cosmology of my Wendat Nation, suffice it to say that when Aataentsic (whose name means “Mature Flower”) fell from the Sky World, she grasped into her hands the myriad seeds of the Celestial Tree, and brought them with her to what would become her earthly home. Earth, we are told, is formed through the sacrifice of Frog, the earth-digger, and rests upon the back of Turtle, but only after Aataentsic spent a brief interlude, upon first arrival, resting on a bridge formed from the joined wings of two water fowl, possibly geese, loons, or swans – telling of the story varies. Arriving here, in this non-celestial world, First Mother is a seed-carrier. In the passage of time, and following the death of her daughter, Aataentsic’s two grandsons also become forces in creation, by their shaping of the world as we know it using, their differing, but balanced variety of methodologies. They disperse the sacred seeds across the landscape, among other acts of creation that they engage in. They are seed-spreaders. And so it is, traditionally, that the world is seen as created and perpetuated by the seed-carrying capacity of females and the seed-spreading capacity of males. Both play important roles, and both are required.

In the film, Big Hero 6, we encounter a young man, Tadashi Hamada, who is the initial creation force behind the robot, Baymax, with its “non-threating, huggable design.” Upon his successful completion of this creation, and only after nearly 100 attempts, Tadashi’s first thoughts are “Wait until my brother sees you! You are going to help so many people!” His brother, several years younger and, we are lead to believe, an even more brilliant protégé than Tadashi, is Hiro, the story’s hero. Not unlike the twin grandsons of the Wendat creation, Tawiskaron and Tsetah, Tadashi and Hiro both have roles to play in the ongoing creation of Baymax, but by very different means. In 1899 William E. Connelley wrote: “The works of each were to be subject to the modifications of the other, but neither was to absolutely change the character of any work of the other, nor was he to totally destroy it.” And so it is in Big Hero 6, that even after the death of Tadashi, his influence upon Hiro, and their four other friends, continues to impact the course of Baymax’s upgrades.

Baymax is a lovable, large white marshmallow-like robot with an as-needed video display screen on his stomach (based on the timber of the voice, Baymax will be assumed to be male for ease of identification in this discussion), whose purpose in existing is as a “personal health care companion.” Tadashi developed him so that his “programming prevents injuring human beings.” Upon hearing a sound indicating human distress, Baymax activates and moves off his charging station and confronts the person in apparent pain and makes the inquiry: “On a scale of 1 to 10, how would you rate your level of pain?” Following a full body scan, during which an appropriate course of treatment is determined, Baymax can only self-deactivate after the patient says that s/he is satisfied with his or her care. And this is where I interpret Big Hero 6 to be a story about a “Phenomenology of Care.” The caregiver does not depend upon the external evaluation he might make of the patient’s care, rather, requires this most salient question to be answered affirmatively before dismissing the patient: “Are YOU satisfied with YOUR care?”

At its heart, Phenomenology is the “study of our experience,” it is that within the disciple of Philosophy which is concerned, according to the Stanford Encyclopedia of Philosophy (SEP), with “how we experience:”
-- Ontology is the study of beings or their being — what is.
-- Epistemology is the study of knowledge — how we know.
-- Logic is the study of valid reasoning — how to reason.
-- Ethics is the study of right and wrong — how we should act.
-- Phenomenology is the study of our experience — how we experience.

“Literally, phenomenology is the study of “phenomena”: appearances of things, or things as they appear in our experience, or the ways we experience things, thus the meanings things have in our experience. Phenomenology studies conscious experience as experienced from the subjective or first person point of view.”

Or to put another way: “Phenomenology studies structures of conscious experience as experienced from the first-person point of view, along with relevant conditions of experience. The central structure of an experience is its intentionality; the way it is directed through its content or meaning toward a certain object in the world.”

And one further quotation from the SEP article on Phenomenology by David Woodruff Smith (2013): “Thus, we explore structures of the stream of consciousness, the enduring self, the embodied self, and bodily action. Furthermore, as we reflect on how these phenomena work, we turn to the analysis of relevant conditions that enable our experiences to occur as they do, and to represent or intend as they do. Phenomenology then leads into analyses of conditions of the possibility of intentionality, conditions involving motor skills and habits, background social practices, and often language, with its special place in human affairs.”
http://plato.stanford.edu/entries/phenomenology/

In short, Phenomenology is the study of “experience-as-lived” and is, therefore about, “appearances as opposed to reality.” This is why Baymax cannot terminate care until he knows that the cared for is, by the standards of their own lived experience, satisfied with their care.

In their adventures Hiro, Fred, Honey Lemon, Wasabi, and Go-Go Tamago, like Baymax, undergo the transformations that will empower the five them, in concert with Baymax, to ultimately defy time-space, and the force of gravity, and rescue the astronaut, Abigail. She is the daughter of Robert Callaghan, Professor of Robotics, and is trapped within a failed teleportation in a deep sleep state.

It is in believing that the entrepreneur Allister Krei, about who Callaghan says is: “Only motivated by his own self-interests” and that “he cuts corners on sound science;” is the perpetrator of the acts that lead to the loss of his daughter, that the brilliant and well-meaning Callaghan is also transformed, but in his case, for the worse. The now masked, techno-thieving Callaghan must be stopped from carrying out his revenge. Before the heroes can accomplish this, there are important lessons to be learned. Hiro has not only lost access to his marvelous micro-bots, his brother Tadashi has died in the fire at the university that sets the heroes into motion. In the first incarnation designed by Hiro, our troupe of unlikely super-heroes are tinged with the malevolence Hiro feels for his unknown nemesis. As the theme song from the movie entitled, “Immortals”, written and performed by Fall Out Boy says: “I'm bad behaviour but I do it in the best way.” Instead of just unmasking and thereby, separating the villain from his ability to utilize the micro-bots, Hiro upgrades Baymax with data downloads, skill sets, and body armor that Baymax distressingly proclaims “may compromise my non-threatening, huggable, design” which is what Hiro intends, initially. However, Hiro’s plans are thwarted by Baymax, once the robot realizes that his “health care protocol has been violated,” gently stating: “I regret any distress I have caused, my purpose is to heal the sick and injured.”

This is when Baymax recognizes that his database on personal loss is not enough, and he shows Hiro the rather comical build-in video recording he carries, made during the many “takes” Tadashi filmed of himself throughout Baymax’s development. Baymax points to his stomach and informs Hiro: “Tadashi is here.”

And so it is that the six heroes revise their methods, reform their intentions, restructure their conscious experience and “use their big brains” to “figure a way out of the problem” by looking “for another angle.” Hiro’s skull and cross bones flash drive is removed from Baymax and, as Hiro says “we didn’t set out to be super heroes, but sometimes life doesn’t turn out the way you planned. My brother wanted to help a lot of people, and that’s what we are going to do.”

For sure, life does not always turn out as planned. If it did, no one would ever need to fill the role of caregiver! What seems so remarkable to me about the insight this film offers about care giving is first and foremost, that it is the perspective of the cared for that ought to determine the level of care, and the arrival of satisfaction with that care. This is not to be the purview of medical or psychological professionals, Health Maintenance Organizations, or even the beloved family and friends who provide day-to-day care. And it is in taking this idea a step further, that appropriate care giving becomes an ethical issue, a question of social justice.

The waking hours that I was spending away from my home and my active engagement as a caregiver when I initially wrote this essay werer mainly spent doing one of two other types of tasks:
First, I was studying Mental Health Counseling at SUNY Oswego to learn as much as I could about identity formation, psychological dysfunction (especially in relationship to trauma), empathic communication, and how to make practical application of that information in my work as a healer.
Second, I was employed as an Academic Content Tutor in the Learning Center at Onondaga Community College to earn a bit of income. In so doing, I also hoped that I could be of some small service, mostly to students with complicated barriers to their academic success. During my 5 years as a tutor I was generally assigned to work with students who had come to our community from war zones, as refugees, who do not speak English as their first language, or who have cognitive and other limitations that make learning more of a challenge for them than more normative students – and at a community college in an urban region that is economically suffering and racially divided -- our norm falls far beneath the statistical norm of many other colleges in the United States. The location in the Learning Center that I most often selected to sit in was at a small table underneath a larger than life-sized photograph of Albert Einstein. Along with his photograph this large poster includes his quotation: “We cannot solve our problems with the same thinking we used when we created them.”

This is the approach I took as a tutor, and that I continue to take as a caregiver. It is the approach am now taking as a Red Cross Lead Volunteer in the Western and Central New York Region where much of the work I do is for the Services to the Armed Forces and InternatioaI Programs. Sometimes, a new approach is needed, or we as caregivers, professionals, and as a society will simply continue to repeat the patterning of our unresolved problems. We must begin at Phenomenology – at the intentions of our as-lived experiences – and move to justice from there.

How might such a just society look, if we allowed ourselves to imagine it?
Based on their (2007) “Workshop on Disability: Bioethics, Philosophy, and Public Policy,” David Wasserman, Adrienne Asch, Jeffrey Blustein and Daniel Putnam have contributed to the Stanford Encyclopedia of Philosophy an examination of “Disability and Justice” (first published May 23, 2013 at http://plato.stanford.edu/entries/disability-justice/) which covers a wide range of topics and summaries of the ideas of many theorists and thinkers. Their essay is readily available on the Internet and might be considered a “best practices” reading for those interested in exploring the issue. From their bibliography I would also like to highlight an additional text: Olkin, R., 1999, What Psychotherapists Should Know About Disability, New York: Guilford Publications.

Here, in connection with the notion that a Phenomenology of Care is about “appearances as opposed to reality,” I would like to limit my focus to a small portion of the information presented by Wasserman, et. al., as I seek an articulation of justice that is inclusive of not only the disabled, but any individuals or groups who might be in need of care, or any other kind of “reasonable accommodation” that would make their participation in social policies and public institutions free from exclusionary attitudes and practices, or environmental and social barriers, as those barriers appear to those who have heretofore, been excluded.

As I wrote in the original draft of this paper, and is still true today: I recognize that as a temporarily able-bodied person of sound mind, I am writing about situations that are outside of my own lived experience. Any such attempt will be flawed, and limited. I cannot even begin to imagine what it might be like to be disabled, or even feeble. I beg pardon in advance for my narrowness of scope. What I can offer is an empathic analysis, born of personal experience. Early on in my decade – plus years of experience as a caregiver to my spouse, you could say I was not unlike Hiro: “I'm bad behaviour but I do it in the best way.” What do I mean by this? Reflecting back, I know that I made some errors of judgements and poor choices. These resulted in a great deal of trouble for myself, and others. I, like Hiro, had to pull out the skull and cross bones flash drive from my own inner care giving robot, and “look for another angle.” I had to discover the how I could be “way more.” I went through a period not unlike Baymax during the time his battery was running low, in which I experienced distorted functionality. I saw myself as having two choices: either to let the charge run out completely, what is often called when talking about care providers, “burn-out.” Or, I could, with the help of a friend (or several) find my way back up the stairs to my charging station, hang out there long enough to recuperate, or, as is spoken of when discussing care giving, I could get some much needed “respite” and resume doing my best to accomplish the tasks at hand. Like Baymax, who, having received some upgrades to his functionality and appearance, at first “failed to see how flying will make me a better health care provider,” I had to come to the recognition that yes, in fact, “flying makes me a better health care companion!” For me, this was the key – it was not what I provided, but the companionship, the sense of community, the “reassurance and comfort,” as Baymax says, that make a person a quality caregiver. Baymax knows: “Those who have suffered a loss require support from friends and family.” It is from this understanding of my own role as caregiver that I can examine the ethical dilemmas of our society, as we seek a just way forward in a world deeply in need of care.

Returning to Wasserman, et. al. the issue of disability and justice is introduced in this way:
Disability is of particular interest for justice because of the way in which it juxtaposes two basic and powerful senses of injustice: first, the treatment of some people as moral, social, or political inferiors on the basis of irrelevant characteristics; second, the creation, perpetuation, or simple failure to correct disparities between individuals in income, wealth, health, and other aspects of well-being on the basis of morally irrelevant factors. These two broad categories of injustice – roughly, disrespect and distributive inequity – correspond closely to Nancy Fraser's influential distinction between recognition and redistribution (1995) as alternative responses to the problem of injustice. Recognition seeks to secure equal respect for individuals to whom it has been denied; redistribution seeks to correct unfair disparities in advantages of various kinds…. A tenet of the disability rights movement is that the two types of injustice mentioned above – disrespect and distributive inequity – are related. People with disabilities have long been treated as moral and social inferiors. Routinely, they have been denied jobs for which they are highly qualified because they have been considered incompetent, or because employers have not been comfortable with their presence in the workplace. Often, people with certain disabilities have been consigned to segregated institutions and facilities because they have been regarded as incapable of making decisions or caring for themselves, or because others in the community did not want to interact with them.

Following some discussion about the medical and the social models for understanding what is meant by disability they write:
The challenges for social models of disability for justice may seem greatest for intellectual and psychiatric impairments, as well as for complex physical impairments such as fibromyalgia, multiple chemical sensitivity, and other conditions that radically and unpredictably affect energy, stamina, and functioning… these conditions strikingly display both aspects of impairment, as markers for stigma and as sources of functional limitation: cognitive and psychiatric impairments evoke some of the strongest prejudice and all present some of the most difficult functional limitations, e.g., on the capacities to engage in practical reasoning, to recognize the intentions and attitudes of other people, or to function at all in common environments or under typical work schedules. Second, some theorists contend that these conditions pose more of a challenge for the social model than even the most severe physical disabilities, in part because the measures required for greater inclusion are not as concrete or tangible, and may demand greater imagination to envision and implement.

Yes, I begin with the most challenging conditions, those requiring the greatest vision to implement. While I was a student of Mental Health Counseling, I felt that there was no other honest place to start in my quest for just care. I left my program of studies because I was not sure that my goals were in line with the Mental Health industry (that will have to remain a discussion for a future installment in my blog series). Let me say now that we all know that given enough money and time all sorts or architectural and sensory enhancements could be developed and constructed, easing environmental barriers – if there were the will to do so. But it is those less tangible measures – the ones that will require creativity, sensitivity, and imagination to accomplish – that are so much more difficult for people to allow themselves to believe could, or maybe even should, be accomplished. Just how much accommodation is “reasonable accommodation?” And are we prepared as a society to really grapple with the mentally ill as fully incorporated into the total spectrum of privileges in our political, economic, and social lives? What would such a world look like? Is it, in fact, as frightening as so many believe -- a belief which has been at the core of horrifying institutionalization and barbaric medical practices for far too long? Some of this is fear and stigma is still residualized in the limitations put on Mental Health Counseling and other forms of care by the insurance industry, although there have been some small, recent improvements.

I do not think the answers to such difficult queries lie in how we solve these kinds of massive, highly charged situations. Instead, if we could somehow find our way to expand our understandings of inclusion so that they stretched out some significant distance from the comfort zones of those in conditions of statistical norms – stretch our thinking, not only about disability, or aging, or illness -- as we think not only about care giving, but also architectural modifications, destigmatization, raised social or socio-economic status, and all the other related issues that need addressing if we are to destroy the barriers which play into the isolation of individuals and groups.

If we could envision and invest in a society that makes manifest and celebrates… that is built to accommodate, for example the left-handed. Or those far above or below average height, the intellectually gifted as well as the cognitively impaired; and all the great variety of our collective human condition; then maybe, just maybe, little by little as it is economically responsible and feasible with the available resources of time, money, and compassion; we could begin to address social injustices. As long as we continue in the same modes of thinking that we have used until now, which are ways of thinking that are the result of believing the answers lie in what needs can be provided for by those who believe the approach to transformation ought to come from the perspective of those who are normative. Instead, if we could permit ourselves to hear the imaginings of even the previously most ostracized among us, solutions might emerge which would be based in the lived realities and apparent understandings of those for whom this newly envisioned world would make accommodation.

Albert Einstein has also said: “In matters of truth and justice, there is no difference between large and small problems, for issues concerning the treatment of people are all the same.” We are all deserving of truth and justice, and the way to achieve it, as I see it, is to recognize, name and accept the magnificent and manifold variety within our sameness, and proceed from there. In the final analysis, the question we each, individually and in community, must be liberated to ask and to answer is: “Are you satisfied with your care?”

Immortals

Lyrics from "Big Hero 6" are written and performed in the film by Fall Out Boy

They say we are what we are
But we don't have to be
I'm bad behaviour but I do it in the best way

I'll be the watcher (watcher)
Of the eternal flame
I'll be the guard dog
Of all your fevered dreams

Ooh oo oo oo oo oo oo oo oo oo ooh

I am the sand bottom half of the hourglass (glass, glass)

Ooh oo oo oo oo oo oo oo oo oo ooh

I try to picture me without you but I can't

'Cause we could be immortals (immortals)
Just not for long (for long)
You live with me forever now
You pull the blackout curtains down
Just not for long (for long)
We could be immor-immortals
Immor-immortals
Immor-immortals
Immor-immortals
Immortals

Sometimes the only payoff for having any faith
Is when it's tested again and again every day
I'm still comparing your past to my future
It might be over but they're not sutures

Ooh oo oo oo oo oo oo oo oo oo ooh

I am the sand bottom half of the hourglass (glass, glass)

Ooh oo oo oo oo oo oo oo oo oo ooh

I try to picture me without you but I can't

'Cause we could be immortals (immortals)
Just not for long (for long)
You live with me forever now
You pull the blackout curtains down
Just not for long (for long)
We could be immor-immortals
Immor-immortals
Immortals

Live with me forever now
Pull the blackout curtains down

We could be immortals (immortals)
Just not for long (for long)
We could be immor-immortals

Immor-immortals
Immor-immortals
Immor-immortals
Immortals

http://www.disneyclips.com/lyrics/bighero6immortals.html

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