Author: Anna

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Week 1

We just had our first class two days ago. This is my third class with Dr. Richards, and I am not surprised to feel that rush of energy, an appetite to think, create, challenge myself.

I finally read her “Every Word is True” and feel like I cheated myself by not reading this manuscript when she first mentioned it back in May. I was too swamped then and felt I could not possibly squeeze a multi-page article. I should have. It would have helped me in my academic writing class. I also see how and where I connect with my fellow students. I feel a kinship because I was allowed to take a peek inside their heads as they progressed through their Qualitative 1 class. I do not relate to most of the students who co-wrote the study because I did not feel tense about my Qual 1 (I also did not take it with Dr. Richards). Instead, I could not wait to take it.

Now I see that intellectual “leavening” I invariably experience at the beginning of each Dr. Richard’s course does not just happen to me.  I wonder if this is so because Qualitative research stimulates thought by demanding we leave the boundaries of routine, or because Dr. Richards inspires it. I think it may be both. The subject matter generates the opening, Dr. Richards helps keep it open.

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Positivism is like a map.

Navigating life as it is framed by personal ontological beliefs, social frames,  and ecologies, and even global dispositions of collective humanity (neoliberalist values, for example) reminds me of a life in a city. I now live in a single-family home and must drive everywhere, even to a store. But I grew up differently, and therefore, have the freedom to transport myself to my hometown any time I please through my memories.

Some streets are well-known and I rely on them to take me to my routine destinations. They are also starting routes to bus stops or even train stations or airports that transport me to places yet unknown. By traveling through these neighborhoods, I can predict where I will be if I take this road or this particular street. I can plan my route and calculate the time it will likely take me to get where I need to go. More often than not, I visit these destinations because of certain obligations or necessities: work, school, store, a meeting.

Yet there are always neighborhoods and places I have never visited before, whether they are a block or thirty blocks away. Occasionally, life will demand that I visit these places for whatever reasons, so I ask for directions, I pair up with another person to find my way, I consult a map. Sometimes, if I have a general idea of where my destination may be, I may even take risks by just trying to find the spot heuristically, using signs, clues, and just plain common sense; it all depends on my destination, the nature of my visit, and my time frame.

Positivism is like a map–it is created using rules and measures. Its utility is tied to its accuracy and rigid assumptions of accuracy. To serve its purpose, a map cannot be too general or ambiguous or mislabeled; otherwise, it is just a bad map. It is UNRELIABLE. Of course, there are maps that attempt to identify places that are still being developed or not even yet explored (Columbus, for example, was in the business of doing just that). Yet, life is more than a map. Some of my most satisfying adventures happen when I just walk and explore, take in the sights and the sounds, and smells, ask other people for help and their opinions, when I connect and create new memories, and when I EXPERIENCE my journey.

Therefore, I can say that I create knowledge about a place either through familiarity or through experience. Both methods are valuable. Both are needed.

I fear, however, that if I live my life by the map, afraid to be lost, I will be no better than a hamster in a wheel. A hamster’s hope is that it is stupid; I, on the other hand, may develop unwanted regrets to haunt me on my deathbed. Similarly, as a researcher, I wonder that if I follow maps and prescriptions, I may just miss my chance at greatness, and  join the multitudes of garden-variety scholars (all lovely people, I am sure!) afflicted by the “poverty of complexity” (Manning, The Minor Gesture, p. 17) for the fear of being judged and not found worthy by other scholars, to attain tenure, to survive budget cuts, to publish or perish, to please, to appease, and for any other reason they stay clear of the “confused heap” (Manning, p. 17) that sometimes represents qualitative research.

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Developing philosopher?

This is happening again: Janet’s class (ABR) has not even started, and I am already in that mental “leavening” mode: my head teeming with ideas and arguments why some ideas are worth pursuing and others are not.

This time, in the summer 2018 break, I did not allow myself slouch between the semesters: I have been trying to read Erin Manning’s “In the Minor Gesture” book that Jenni recommended months ago, but I have not had the time to read. Side thought bubbles up: “How do professors do it? Where do they find the time to read to stay intellectually fit? I hope that in my professional future I am afforded the opportunity to read texts not directly related to my job objectives.” I also have been reading Foucault: “Madness and Civilization” (Richard Howard’s translation). I have not gone past the introduction. Reading is heavy, but not so much because I do not understand it, but because I am compelled to highlight every other thought–they all seem so profound. I wonder if this is how all my philosophy readings are going to be.

Speaking of philosophy… I signed up to do a presentation on Autoethnography in Janet’s Qual 1 class, and there has been a constant stream as I imagine what I will say and why. It is a jumbled mess at the moment. I feel the urge to teach this class sometime, but right now I am still processing and organizing all that I learned. I do not have a good autoethnography to show for myself–just bits and pieces that need time to ferment and grow as I am still walking on this shaky ground trying to justify that my voice as a researcher and participant is important. I have been down this road many times by now, and I am fairly confident that if I find some other person’s story of her experiences as an individual with autism fascinating and illuminating, then likewise, my story as a parent of a child with autism will find someone’s attention. But there is more significance to my struggles than I originally thought: it is not that I struggle with self-esteem (I have in the past, and I still do in certain areas); not that I lack confidence as a researcher and a speaker (I know I do, though oddly, I am extremely confident that my lack confidence is just lack of experience easily remedied); it is that I realize that I am trying to shed the skin of positivism and grow a new one, not yet sure which one. I like Foucault. I like Manning. I am sure I like others as well, but I am not yet familiar with them. This is where my struggles with autoethnography brood. This is where philosophy comes in.

So I consider my idea for a dissertation that focuses on my journey from a mother, graphic artist, an undergraduate psychology major to a researcher and a PhD (see here, Idea Number Four), and I realize that this might actually be good. I wonder how many of us students graduate as doctors of philosophy without considering philosophy beyond the Philosophies of Inquiry class. I know some students who want the degree to prove to someone they can, some need the degree to stay relevant in their jobs, others are there for the knowledge and training, many are driven by a mixture of reasons. But how many of us are actually delving into philosophy because we sense the developmental need? How many of us make the time to read anything other than our textbooks? It is incredibly difficult with all the other competing needs and wants. I want to enjoy my children–they are amazing! I do not want to wake up one day and realize that time flew by and I missed it all. I want to say “yes, they grew up too fast, but I enjoyed watching them grow.” Danny now is in first grade–he is still lovey-dovey, cuddly, cute. He needs a lot of attention and both Ed and I are happy to give it to him, but what about the time to read and to think? I look at Eddie every day and I marvel at how he became such handsome, strong, kind, and intelligent young man. He is barely 13, but he is more mature than this. I enjoy him as a peer and find it difficult to talk down to him. Becky, too. She is a teenaged girl with all the frustrating and annoying attitudes and habits, and I catch myself being too critical and not at all supportive because her attitudes drive me crazy, but she fascinates me with her insights into her world of autstic perception, and I love the moments when we hang out and talk; when she wants me to do her hair or asks me to go for a walk. Where do I find the time to enjoy my husband? We both seem to agree that in this stage of our lives our children are a priority, so we try to connect whenever we can knowing our seeming lack of attention to each other is temporary. We still manage to challenge each other intellectually whenever we can and keep making our journey together, but also somehow parallel to each other. Hence, my development as a philosopher cannot follow a traditional academic path (is there such thing as “traditional academic path,” anyway? I guess, I am referring to a brilliant young undergraduate who just kept going to school instead of taking a break to start a family, to figure out who I am and why I exist) I must live and find my growth through daily experiences. A month ago, as I was rambling about Foucault to Eddie, he  must have referenced whatever concept he formed about philosophy, commented about my interest in philosophy and asked whether I still want to do research, then I answered “well, I am going to be a Doctor of PHILOSOPHY,” and suddenly, it dawned on me that so far, my experience with philosophy has been shallow, not nearly enough to count toward the “Ph” in the “PhD.”

As for the idea for my dissertation, the one where I want to talk about my journey to the PhD, I keep interrogating it. This time, I apply Manning’s discussion of what counts is a good research problem and what does not: ”

“Here I am following Henri Bergson, who suggests that the best problem is the one that opens up an intuitive process, not the one that already carries within itself its fix. A solvable problem was never really a problem, Bergson reminds us. Only when a question is in line with the creation of a problem is it truly operational. Most academic questions are of the solvable, unproblematic sort. What the undercommons seeks are real problems, problems intuited and crafted in the inquiry.” “The challenge, as Bergson underscores, involves crafting the conditions not to solve problems, or to resolve questions, but to illuminate regions of thought through which problems- without- solutions can be intuited.” p. 10
So I think my idea is a good one as it helps shed some light into the androgogy of developing a student into a PhD. It is certainly in line with the mission of education and preparation of research methodologists.

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Minor Gesture, Erin Manning

“Here I am following Henri Bergson, who suggests that the best problem is the one that opens up an intuitive process, not the one that already carries within itself its fix. A solvable problem was never really a problem, Bergson reminds us. Only when a question is in line with the creation of a problem is it truly operational. Most academic questions are of the solvable, unproblematic sort. What the undercommons seeks are real problems, problems intuited and crafted in the inquiry.”

“The challenge, as Bergson underscores, involves crafting the conditions not to solve problems, or to resolve questions, but to illuminate regions of thought through which problems- without- solutions can be intuited.” p. 10

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Thoughts on knowledge

i feel like I am camping near the entrance of something important. I have been roaming these shores for months, unable to enter. I smell it, I see its contours obscured by fog, I hear sounds, I am drawn, but I cannot figure out how to grow gills. Arts based research and its philosophical fibers. Currents and waves. Or just an alien world, not necessarily one like a sea. I want to breathe it in, but even at my best, I am just a snorkler with a mask who bobs on the surface, limited by my physiology of a land creature. Or an earthling limited by my earthly shape. I am taking classes with Janet and now and then I talk to Jenni, and I want to come visit them where they are, but I was raised  a positivist. Positivism is my reality. I understand its rhetoric, or at least, I feel comfortable inhibiting its structures, but in my heart, I know I am more, much more. I never fit in. As a child, I used to draw a lot. I played an instrument and enjoyed classical music. I knew where to escape when life became monotonous with all its demands for sense-making.

Postructuralist ideas became a highway that brought me back to the familiar shores of thought. And now I am quieted and dumstruck by Erin Manning’s “what if knowledge were not assumed to have a form already? What if we didn;t yet know what needed to be taught, let alone questioned?” (Minor gestures, p. 9) What if? We are condiitioned and trained to live in the reality that Manning calls neo-liberalism. What if we did not have to conform? If only I could take a pill like Neo in the Matrix trilogy and wake up a real reality. Is it even a specific reality? Neo and his fellow humans shared one, but are realities singular?

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Why I turn to Art

Plass, J. L., Moreno, R., & Brünken, R. (2010). Cognitive load theory. [electronic resource]. New York : Cambridge University Press, 2010.

 

Our second Qualitative Methods course readings focused on “thinking with” poststructuralist theory, and the first chapter of the Jackson and Mazzei’s “Thinking with Theory in Qualitative Research” book (2012) was difficult to process: I knew little of poststructuralists’ writings, and I was even less familiar with  the concept of “thinking with theory.” By the third time I finished re-reading the explanation of how the authors plan to “plug in one text into another” in the consequent chapters, my head began to fill with images. I pictured some odd piece of machinery with a “plug” of idea prongs at the end of a long flexible hose entering an outlet of some abstract concept, some shapeless mass. Then I recalled how in my graphic design projects I would create a template of a layout or a website using sample images and greeked text, then “plug in” real images and copy after the client approved the design. In my mind, this second analogy fit beautifully: Jackson and Mazzei’s interview data was the “template;” the poststructuralists’ ideas were the “real” images and copy that drove the design and made it authentic. Clearly, the second analogy, drawn from a concrete life example, was more effective than the first because evidently, the book’s idea finally made sense. Somewhere in the middle of the chapter I reached for a yellow highlighter and started marking thoughts that supported my interpretation of the text. Finally, I wrote a brief reaction paper and thought of another analogy to capture my reading experience. I used words to describe it:

“I compare discussions of philosophy to eating nuts–they require effort to crack, are difficult to digest, but are oh so satisfying and full of rare minerals essential to good health. This week’s reading presented a double challenge with the inner shell of Derrida’s Deconstruction, and the green and fuzzy outer layer (the one that connects the nut to the tree and to the other nuts) of Jackson and Mazzei’s discussion of ‘plugging in.’ I had to work outwards.”

Analogies helped me make sense of unfamiliar concepts, and imagery helped made analogies more detailed and less abstract.

After reading about how Jackson and Mazzei applied Derrida’s philosophy to analyze their interview data, I felt a strong urge to try the same with my own topic of interest: high functioning autism in school and society. At that stage, my topic was very broad and hung on a mere observation that children who have ASD and are considered “high functioning” do not belong in self-contained classrooms, and yet, they have difficulty fitting in inclusion classes. As I contemplated this thought, I sensed hierarchies in the terms “function” and “special needs,” led by the second week’s reading about Spivak’s identification of “margins” and “centers” within social structures. However, I struggled to find an appropriate model to conceptualize Spivak’s teachings in high functioning autism context. Challenged and intrigued, I dusted off the 80-color set of watercolor pencils and an old sketchbook and started doodling. Is Spivak’s discourse about marginality and power relevant to my inquiry? If so, how? I used colored pencils to explore the relationship between margins and the center spatially, and to understand how Spivak’s “deconstruction re-positions marginality not as a positive space outside of the center, but as constructed within the center” (Jackson & Mazzei, 2012, p. 37).

My thinking exercise resulted in a sketch of an apple with a slice taken out and the apple’s center exposed. The apple represented the entire education system in the U.S., and I thought of how my daughter who has “high functioning” ASD would probably be placed somewhere closer to the skin of the fruit. Looking at my apple, I realized how much more room there is on the outer part of the apple compared with the inside, and how despite my thinking of an apple consisting of “outer” and “inner” parts it really is just one fleshy fruit with a very thin skin and a relatively small seed box.

In retrospect, my little discovery was hardly profound, but I took note of how sketching to process complex information felt right and exciting. Therefore, for the following week’s study of Michel Foucault “power and knowledge” theme, I went straight for my pencils and paper and read the assigned chapter reflexively. The topic of power and knowledge instantly resonated with my ever-present thoughts about my progress as a scholar and coincided with the need to revisit my reflexivity statement for the upcoming authentic inquiry project. The sketch depicted a stack of hats that conceptualized the many roles I routinely perform as a mother, wife, daughter, and a student. This sketch took longer to complete as I fought to resist my desire to privilege the quality of drawing over the concept and the process of sketching as a method of research. I had to remind myself of my purpose–not to showcase my (hopelessly rusty!) drawing skills, but to visually express my thoughts as I filtered them through Foucault’s writings and through examples of Jackson and Mazzei’s use of his theory for analysis. As an extra measure of commitment to my scholarly rather than artistic aims, I put my favorite quotes from the chapter on the drawing’s margins.

As I worked on my sketch, I remembered how wonderful it felt to linger in this creative state, unburdened by the constraints of time and gravity: my mind was free to travel in any direction, effortlessly slowing down or speeding up to interact with ideas as they formed. In this dimension, my daily activities and problems went “off the grid” freeing up cognitive resources for my intellectual pursuits. With the context of present reality muted, I found it easier to access any memory from my timeline and to create new connections between experiences and their meanings as I scrutinized my researcher identity. I believe that visual information produced by the controlled motion of my hand stimulated the thought process even as thoughts…

 

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Foucault “History of madness”

ISBN 10: 0–203–64260–0 (eBook)

Routledge, 2006. Edited by Jean Khalfa
Translated by Jonathan Murphy and Jean Khalfa

 

“The caesura that establishes the distance between reason and non-reason is the origin; the grip in which reason holds non-reason to extract its truth as madness, fault or sickness derives from that, and much further off.” p. XXVIII

Preface to the 1961 edition.

#Abandonment is his (a leper’s) salvation, and exclusion offers an unusual form of communion.” p.6.  –They were to live away from everyone, to observe life and worship but to never partake; yet, they were not separssred from the grad e of God like the leper who died on a rich man`s doorstep and was taken to heaven.

“Once leprosy had gone, and the figure of the leper was no more than a
distant memory, these structures still remained. The game of exclusion
would be played again, often in these same places, in an oddly similar
fashion two or three centuries later. The role of the leper was to be played
by the poor and by the vagrant, by prisoners and by the ‘alienated’, and
the sort of salvation at stake for both parties in this game of exclusion
is the matter of this study. The forms this exclusion took would continue,
in a radically different culture and with a new meaning, but remaining
essentially the major form of a rigorous division, at the same time social
exclusion and spiritual reintegration.”  p.6

Venerial disease took over leprosy:

” despite their longstanding right to stay in these segregated areas, there were too few of them to make their voices heard, and the venereal, more or less everywhere, had soon taken their place” p.7

“Locked in the ship from which he could not escape, the madman was handed over to the thousand armed river, to the sea where all paths cross, and the great uncertainty that surrounds all things. A prisoner in the midst of the ultimate freedom, on the most open road of all, chained solidly to the infinite crossroads. He is the Passenger par excellence, the prisoner of the passage. It is not known where he will land, and when he lands, he knows not whence he came. His truth and his home are the barren wasteland between two lands that can never be his own.” p.  11

“the link between water and madness is deeply rooted in the dream of the Western man.” p. 11

“a long series of ‘follies’ which as in the past stigmatised vices or faults but blamed them not on pride, a lack of charity or the neglect of Christian virtues but on a great unreason which could be blamed on no one in particular but which dragged everyone along in its wake in a sort of tacit agreement. The denouncing of madness became a general form of moral critique. In farces and soties, the character of the Fool, Idiot or Simpleton took on an ever-greater importance. He was no longer familiar and ridiculous, but exterior to the action, and took centre stage as the harbinger of truth, playing the complementary, inverse role of the figure of the fool in tales and satires. If madness drags everyone into a blindness where all bearings are lost, then the madman by contrast brings everyone back to their own truth. ” p.13

Culture in the middle ages: “Madness and the figure of the madman take on a new importance for the ambiguousness of their role: they are both threat and derision, the vertiginous unreason of the world, and the shallow ridiculousness of men.” p. 12, 13

“Madness too made an appearance in the academic arena, becoming a self-reflexive object of discourse. Madness was denounced and defended, and proclaimed to be nearer to happiness and truth than reason itself.” p. 13

Here,  I see a parallel with autism. Persons with autism are ascribed special mental powers, and some discourses result in a challenge to what normality is.

Beautifully put logic

Death as the destruction of all things no longer had meaning when life was revealed to be a fatuous sequence of empty words, the hollow jingle of a jester’s cap and bells. The death’s head showed itself to be a vessel already empty, for madness was the being-already-there of death.53 Death’s conquered presence, sketched out in these everyday signs, showed not only that its reign had already begun, but also that its prize was a meagre one. Death unmasked the mask of life, and nothing more: to show the skull beneath the skin it had no need to remove beauty or truth, but merely to remove the plaster of the tawdry clothes. The carnival mask and the cadaver share the same fixed smile. But the laugh of madness is an anticipation of the rictus grin of death, and the fool, that harbinger of the macabre, draws death’s sting.” p. 14, 15

“The substitution of the theme of madness for that of death is not the
sign of a rupture, but rather of a new twist within the same preoccupation.
It is still the nothingness of existence that is at stake, but this nothingness
is no longer experienced as an end exterior to being, a threat and a
conclusion: it is felt from within, as a continuous and unchanging form of
life. Whereas previously the madness of men had been their incapacity to
see that the end of life was always near, and it had therefore been necessary
to call them back to the path of wisdom by means of the spectacle of
death, now wisdom meant denouncing folly wherever it was to be found,
and teaching men that they were already no more than the legions of the
dead, and that if the end of life was approaching, it was merely a reminder
that a universal madness would soon unite with death.” p. 15

“It was no longer the end of time and the end of the world that would demonstrate that it was madness not to have worried about such things. Rather, the rise of madness, its insidious, creeping presence showed that the final catastrophe was always near: the madness of men brought it nigh and made it a foregone conclusion.” p. 15

 

Although it was still the case that the vocation of the Image was essentially to say, and its role was to transmit something that was consubstantial with language, the time had nonetheless come when it no longer said exactly the same thing. By its own means painting was beginning the long process of experimentation that would take it ever further from language, regardless of the superficial identity of a theme. Language and figure still illustrate the same fable of madness in the moral world, but they are beginning to take different directions, indicating, through a crack that was still barely perceptible, the great divide that was yet to come in the Western experience of madness.”

“But if knowledge is important for madness, it is not because madness might hold some vital secrets: on the contrary, it is the punishment for useless, unregulated knowledge. If it is the truth about knowledge, then all it reveals is
that knowledge is derisory, and that rather than addressing the great book
of experience, learning has become lost in the dust of books and in sterile
discussions, knowledge made mad by an excess of false science.” p.  22

“madness here is not linked to the world and its subterranean forms, but rather to man and his frailties, his dreams and illusions. The dark cosmic forces at work in madness that are so apparent in the work of Bosch are absent in Erasmus. Madness no longer lies in wait for man at every crossroads; rather, it slips into him, or is in fact a subtle relationship that man has with himself” p. 23

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A Mother’s Guilt and Shame: An Autoethnographic Sketch

“I feel kinda guilty about it…” I concluded as I finished scrubbing the last pot. Dishwashing is a lot more fun when I chat with my sister-in-law. Besides, I would rather wash dishes in her kitchen than in mine—in my own house, I always have something to do, and dishes are not a priority; in her house, dishes are a welcome distraction from my social awkwardness and an escape from inactivity.

Frankly, I do not even remember what I felt guilty about, but Axita’s words stick in my head: “Yes, you keep saying that. What is that all about? You are not even Catholic!” We both chuckle: I have been the member of this Puerto Rican family several years now, and I know exactly what she means. Then I ponder: I often do feel guilty. Guilt is such a familiar emotion that I cannot imagine describing myself without the acknowledgment of its weight and presence in my life and character.

Guilt

The literature is teeming with articles on the subject of guilt. Guilt has been observed, interrogated, documented, analyzed, compared, conceptualized and extensively studied–both quantitatively and qualitatively–in every context and direction, or so it seems. It is complex. It is rich. It is deleterious and yet, unavoidable (Borelli et al., 2017; Heimowitz, 2013; Tangney & Dearing, 2002), or, as Findler, Jacoby, and Gabis put it, “paralyzing and overwhelming” (2014, p. 47).

Paradoxically, guilt is bound to empathy through their social roots. According to Tangney and Fischer (1995), the more empathetic the individual, the more intensely she or he experiences guilt. Thus, guilt is not an entirely negative emotion as it plays a role in regulating pro-social behaviors.  Roberts, Strayer, and Denham suggest it is best presented as “adaptive-maladaptive continuum” (2014, p. 465) rather than a dichotomy with a clear boundary that separates the two polarities–the “destructive” and the “constructive.”

I typically know when I feel guilty, although the exact location of each situation on the “guilt” continuum, is not immediately clear.  Overall, I am cognizant of how guilt undermines my confidence and turns my mental self-portraits into undignified auto-caricatures. I also recognize how it gives power to some of my accomplishments, adventures, and positive self-appraisals, and therefore, helps redraw my caricatures into decent sketches. “Ego reus, ergo sum.”

Guilt vs. Shame

In its “adaptive” role, my sense of guilt is the magic of magnetism that keeps my moral compass in working condition and my flip-flops on the ground. Still, my “guilt trips” rarely look like a straight line because guilt is messy. In literature, the efforts to detangle the complexities of guilt appear to lead to an explanation of differences between  “guilt” and “shame.” For example, in APA’s Dictionary of Psychology, guilt is “a self-conscious emotion characterized by a painful appraisal of having done (or thought) something that is wrong and often by a readiness to take action designed to undo or mitigate this wrong. It is distinct from shame, in which there is the additional strong fear of one’s deeds being publicly exposed to judgment or ridicule” (2014, p. 476). It follows, then, that shame carries a heavier negative load than guilt through the added pressure of public judgment. However,  Tangney and Dearing (2002) argue that contrary to this well-accepted assumption, the distinction between shame and guilt does not occur in the public-private dimension, but in the “self vs. behavior” dimension. In other words, “Shame involves fairly global negative evaluations of the self (i.e., “Who I am”). Guilt involves a more articulated condemnation of a specific behavior (i.e., “What I did“) (2002,  p. 24).

Trading Shame for Guilt

As Liss et al. (2013) point out, mothers who report “feeling guilty” most likely experience shame, not guilt, although the literature’s presentation of boundaries around each concept continues to be muddy. I find the observation is true at least for me, the mother of three. I much prefer bringing up guilt, not shame, because when I say “I feel guilty,” I admit my vulnerability, and seek support or forgiveness from others. More often than not, I get rewarded. When I say “I am ashamed of myself,” I feel I invite the judgment of others because when people “shame” someone, they take a moral stand; when people try to make someone “feel guilty,” they are being less assertive, if not manipulative. Therefore, if Tangney and Dearing’s (2002) distinction between shame and guilt is accurate, and if mothers who feel like they do not measure up to their own or to an externally imposed model of what a good mother is (Liss et al, 2013), they may, in fact, be experiencing shame, but asking for support by saying they feel guilty. This hypothesis comes with implications for mothers of children with developmental disabilities (and by extension, for their children).

The Price of Guilt and Shame

In her study with intellectually disabled young adults, Grimmet mentions how the mother of one of the young men was “preoccupied by guilt she placed upon herself for his disability and struggled with the additional responsibilities that come with having a child with a disability” (2018, p. 84). The mother did her son’s homework, took care of every little detail of his life, and eventually, assumed permanent guardianship over him. The mother also felt guilty because care for her intellectually disabled son took away from her other children. However, Grimmet (2018) observed that at work, the young man received praise from his supervisor for excellent work ethic and positive attitude; therefore, she proposed that perhaps, the mother did her son a disservice by not letting him try to become more independent. I learned from this study because I relate to the participant’s mother. Guilt and shame (as conceptualized by Tangney and Dearing (2002)) turned the first few years of my motherhood into a perpetual trial.

Making Sense of My Reality

When Becky was finally diagnosed with autism at 9 years old, I began to construct a new reality: what autism means to me and how it will affect our future–mine, my husband’s, our boys, and Becky’s, of course? Reflection was a significant part of this process. I peered into my memories, especially those that centered on Becky’s past behaviors and stress that resulted from these behaviors, then made note of how autism explained what had occurred:  For instance, that time at the Zoo when she was three. Eddie, Becky, and I were standing with my friend and her two little ones on a wooden bridge stretched over the African warthog’s habitat. Becky was curious about the animals, like her brother and friends. She leaned against the railing of the bridge, and somehow, her pacifier fell overboard through the openings in the protective net. There it was, her beloved pastel green binky, suddenly made bright green the by the contrast of the pond’s muddy brown waters and the muddy shore. The moment I saw that binky go down, I whispered to my friend: “You might want to step back. It will get ugly.” I was right. Another moment later, Becky’s teeth were locked in the flesh of my forearm, without as much as one word of warning. She breathed heavily, and her eyes, glistening with tears, communicated anger, and pain.  I understood the significance of her loss and of her lesson–she was dependent on her binky to keep calm, and the physics of gravity forced her to witness the impermanence of reality. Yet, the intensity and the manner of her reaction were difficult to process.

Later, I made sense of this memory in the following way: Becky’s deficits in expressive language and reliance on sameness prevented her from appropriately communicating what had happened and how she felt. I also remembered feeling put on the spot because I had to figure out how what to do in this situation. With my friend next to me, I was afraid of her judgment, of looking like a permissive parent whose (obviously!) inadequate parenting practices gave my daughter an idea that she can act this way. I do not remember how I peeled Becky off my arm, nor what I said to her or to my friend after the fact, but I remember my shame: I was convinced I am a bad mother. Stories like this are too numerous to recall. I fought and argued with Becky since she was little and felt guilty after our confrontations.

After I learned she has autism, I tried my best to learn to back off, but my frustration did not go away. I struggled to find the balance between exercising my authority as a parent and letting Becky have her autonomy. I found it difficult to demand much from my two boys as well because of how I perceived the concept of “fair:” when Becky fought for her alone time, I granted her wishes because I thought her solitude would help prevent meltdowns, even if it meant she got out of doing chores and homework. Consequently, I felt guilty about making her brothers do chores, especially when my littlest one pointed out that Becky did not put away her things, why should he? I was trapped in a cage of my own making–guilt and shame, and I lived there for years.

Looking Forward

From my conversations with other mothers, I know that my situation is not unique and that many women who are raising children with autism struggle to reconcile the discrepancies between their “ideal and actual selves” (Liss et al., 2013, p. 1113). Literature offers a slew of themes and topics within the context of maternal guilt; yet, I am having difficulty locating research that does not just investigate the origins of guilt and shame but empowers mothers to let go of these maladaptive emotions and self-appraisals. I plan to explore this opportunity further using the qualitative approach.

 

References

American Psychological Association. (2015). APA Dictionary of Psychology. 2nd Ed. in VandenBos, G. R. (Ed.) Washington, DC: American Psychological Association.

Borelli, J. L., Nelson-Coffey, S. K., River, L. M., Birken, S. A., & Moss-Racusin, C. (2017). Bringing work home: Gender and parenting correlates of
work-family guilt among parents of toddlers. Journal of Child and Families Studies, 26(6). 1734-1745. DOI10.1007/s10826-017-0693-9

Findler, L., Jacoby, A.K., & Gabis, L. (2016). Subjective happiness among mothers of children with disabilities: The role of stress, attachment, guilt and social support. Research in Developmental Disabilities 55, 44-54. doi:10.1016/j.ridd.2016.03.006

Grimmet, K. (2018). Using photo-elicitation to break the silence. In M. L. Boucher (Ed). Participant empowerment through photo-elicitation in ethnographic education research: New perspectives and approaches. Springer

Guendouzi, J. (2006). “The guilt thing”: Balancing domestic and professional roles. Journal of Marriage and Family, 68(4), 901-909.

Roberts, W., Strayer, J., & Denham, S. (2014). Empathy, anger, guilt: Emotions and prosocial behaviour. Canadian Journal of Behavioural Science, 46(4). 465-474. DOI:10.1037/a0035057

Tangney, J.P., & Dearing, R.L. (2002). Shame and guilt. NewYork, NY: GuilfordPress.

Tangney, J. P., & Fischer, K. W. (1995). Self-conscious emotions: The psychology of shame, guilt, embarrassment, and pride. New York: Guilford Press.

Tani, F., & Ponti, L. (2018). How different guilt feelings can affect social competence development in childhood. The Journal of Genetic Psychology: Research and Theory on Human Development, 179(3), 132-142. doi:10.1080/00221325.2018.1453473

 

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Parental expectations and a disabled person’s identity

An interesting quote from a study performed with people with Intellectual Disabilities:

“Faith viewed herself as a helper and a protector of individuals with disability, while at the same time distancing herself from relating to them as a person with a disability. It is evident that Faith’s personal identity was not wrapped up in having Down syndrome. This struggle with identity seemed to be a culmination of parental and family expectations, the particular opportunities she had had in her life, and other community influences that recognized her as a high functioning young adult.

Faith struggled with her sense of belonging. She seemed driven by a determination to prove to the world that she was just like everybody else, worthy to stand in comparison to any of her typically developing work colleagues. Her struggles with her own identity may, in some respects, have hindered her own ability to feel a sense of belonging. In not identifying with her disability, she denied the reality she encountered, making it difficult to cope.”

Grimmet, K (2018). Using Photo-Elicitation to Break the Silence. In M. L. Boucher, Ed. Participant Empowerment Through Photo-elicitation in Ethnographic Education Research New Perspectives and Approaches, Springer, p. 79.

Page 80:

It is important to balance belonging. I am not advocating for total inclusion nor
am I saying that there should be no segregated activities. For example, as a teacher, we have segregated awards that only teachers can win. People like to be with those with whom we share common likes, dislikes, hobbies, gifts, and talents. I believe there needs to be a balance of opportunities in which individuals with disability can belong to and find meaning and worth as members or participants. When we only provide opportunities within segregated environments (i.e. Special Olympics, Book Club), I question if those segregated groups represent individuals and opportunities within the participant’s spheres of influence. A person’s spheres of influence are an
example of Bronfenbrenner and Morris’s (2006) framework which demonstrates how multiple systems (spheres) interact with one another (influence), thus playing a vital role in the development of the individual. Are these segregated environments representative of the communities and people who directly and indirectly interact and impact their everyday lives, their spheres of influence?

Quality of Life Is Fluid

“as people grow, the QoL changes. As we age, we have continuous opportunities to develop skills and try new adventures—all of which
provide personal and career development and occasions for developing
self-determination. Maybe our skills lead us to more money, which can change the places we live, the food we eat, the continued opportunities we may have. This fluid or dynamic nature is evident as one’s employment status, financial security, or health may waiver at any point in life, resulting in a positive or negative shift in one’s personal QoL.
Life is ever changing, in a permanent state of transition, and thereby one’s QoL
if fluid, modifying and adjusting according to the ups and downs, the new and the old, and other variations life throws our way.” p. 83

Parent’s Guilt:

“Carter’s mother, Jeanette felt responsible for Carter’s disability and this colored all her decisions about how to provide for Carter’s long-term wellbeing. For example, she felt that Carter was unable to take part in the study without her being responsible for taking the photos on his behalf. Jeanette’s apparent sense of guilt extended beyond Carter’s disability; she reported frequent worries about whether she paid enough attention to her other two children. Jeanette remembers how stressed she became trying to “keep up with [all of Carter’s homework]. [I felt like [I] ignored our other two kids.” Throughout the study, Jeanette remained preoccupied by guilt she placed upon herself for his disability and struggled with the additional responsibilities that come with having a child with a disability.”  p.84

“She is so high functioning in many ways…that people begin to assume she is [high functioning] in every situation. She could be taken advantage of so easily.” p. 86

“any person’s Quality of life (QoL) cannot be judged by outsiders. It is personal. The quality of experiences and the quantity of opportunities individuals have to develop independence and self-determination, to be socially included, and to address their physical well-being all impact QoL. QoL is a messy concoction of elements (material, physical, emotional well-being, self-determination, interpersonal relations, personal development, social inclusion, and rights) that work together to create positive life-long outcomes for individuals with disability. As researchers, we may be able to identify components or develop a framework that contributes to QoL, but we cannot assign a given value to any of the identified component(s) nor suggest what QoL should or should not represent.” p. 87

“The discrepancy between Carter’s independence at home versus at work and out in the community is notable.” p. 87

“sometimes we may need to judge more wisely when to hang on and when to let go of our loved ones with a disability. Our perceived protection over their lives could be the one thing that hinders them the most.” p. 88

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Visual Research–photo elicitation

“photographs do not hold meaning, only information, and meaning can only come from the individual who took the photo; the individual who has a story, an experience, a memory, or an emotion to share.” p. 73

Grimmet, K (2018). Using Photo-Elicitation to Break the Silence. In M. L. Boucher, Ed. Participant Empowerment Through Photo-elicitation in Ethnographic Education Research New Perspectives and Approaches, Springer

“Each photo acted as a concrete symbol of an abstract thought, concept, or memory, thus allowing each participant to articulate a free-flowing thoughts, ideas, and answers to the research questions.” p. 91