Category: Autoethnography

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Teaching, studying, mothering, working

I have been keeping an insane pace.

The conflict with Becky’s school is definitely most upsetting and disorienting. I am so incredibly angry with these people–I think they really believe they are providing Becky with “supports,” and I wonder how much of these beliefs are due to trainings from streamlined, shiny, gift-wrapped programs we scholars design and sell Districts as the next solution to problems. I never thought about scholars and snake-oil salesmen, but I am certainly thinking about it now. The “Gold Model School for Positive Behavior supports” bling just below Ms. Becker’s email signature taunts me. The program’s co-director is Dr. Heather George of USF CBCS. I emailed her but heard nothing. I am really so, so very angry–at Slusser, Ms. Becker, the District, the system. I expected more from Ms. Becker, maybe this is why I feel so betrayed and disappointed… Humanity…

My studies have been limited to keeping afloat in Janet’s class. I did find some gems on the topic of qualitative pedagogies and they have been my main source of sustenance. I take what I can–feast or famine.

Teaching–I am a lot more comfortable, and I have been truly enjoying my new role. I do not panic anymore, not like I used to during first two weeks or so. I find myself in this elated state when I think about my students. I do not take it for granted that what we are doing in this class is incredibly creative, ambiguous, and difficult. We have been narrowing down their research questions workshop-style in class, and I am starting to see first fruits of positive affect. Christ told me last week: “I thought I will hate this class, but I have been having fun. I really hope to actually do my study.”  Also last week, during a consultation with Ev she looked at me with resolve and shared, “you know, I actually plan to do this research. I am serious.” The ideas are amazing, and so are the students. I am getting addicted to the moments when they finally understand something previously closed to them, and their faces light up. They wrote such wonderful feedback on index cards a couple of weeks and caught myself coveting these messages like treasures. Of course, I am skeptical about how much I can infer from these notes, but after reading them, It dawned on me how much they struggle with the ambiguity of translating ideas into a concrete form, and I remembered how difficult it is to be creative. I am used to designing projects of all kinds, but I cannot expect everyone to be able to conjure up creative ideas from thin air and give them a lovely shape of words. I really appreciate the work my students do now so much more!

My transition to teaching happened so quickly and organically–I remember being intimidated by doing oral presentations in class three years ago and getting stressed just thinking about maybe teaching someday. I still struggle to escape the idea there is such thing as “true” knowledge, the boundaries that distinguish “good” teaching from mediocre teaching, and the weight of responsibility that haunts these operations. Responsibility is dangerous because it rushes conclusions and actions, and avoids alternatives if a safer, easier route is in sight.

 

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Symphonic Literature | Academics performed

I signed my contract for 20 hours of work in the lab and in CORE. It came with a condition that I am enrolled 9 graduate hours. And so I thought I had only one class left to take–design of systematic studies. The rest could be direct research, and so I went on a hunt for a class that is both interesting and online or offered in AM (I promised Eddie this will be the last semester of him rushing across two counties home so I could be at school by 5).

First, I skimmed painting and drawing offerings–no luck. This would have been perfect! Then I considered a course from Adult Ed. This would have been a sensible choice, yes. But it just sounded like another class. Then I found Symphonic Literature course and sent an email to Jenni right away to see if my committee will approve. She said do it.

The next day I sent an email to the Music professor, Dr. Robison and we had a couple of back and forths about the content of the course and whether I have what it takes to get a good grade. There were a couple of thoughts of a philosophical nature tangled up with the logistics, and when we arrived at the conclusion that this class is a good fit for what I am trying to do, he agreed to issue me a permit.

Overjoyed, I sent an email to Jenni and Janet, and Janet replied the same evening (and copied Dr. Robison even though I sent my little report just to Jenni and her) with and encouragement and a little praise for me. Dr. Robison did not expect that because he felt the urge to reply and to acknowledge how well-supported I am.

The next morning Janet sent us another email. She addressed him “John” even though she never met him, and invited him (and me) to speak at her ABR class this fall. I felt like I was listening on a conversation between my dad and my teacher–when we moved when I was in first grade, my dad went to my new school with me to convince the teacher to let me join her class. Her class was full, and she gave my dad a hard time complaining how she already has so many students, but took me in in the end. I was standing there in the hallway, sweat dripping down my back (it was already late October, radiators were on), wondering what my fate will be. From my lower-to-the-ground perspective (I was short even for my age), the grown-ups were big and important and equals. I felt important too since my dad was advocating for me.

This memory reminded me of this conversation between Janet and Dr. Robison, and me. None of the negatives, but rather, the feeling of being important enough to be the topic of a conversation. The trust in Janet and her support. The moment of standing at a threshold, the feeling of potential–then it was almost a physical sensation, now it is thoughtful acknowledgement.

What really moved me to record this here, is the assumption in Janet’s invitation to her ABR class: Janet, an academic, reached out to Dr. Robison, another academic, ASSUMING he would be interested in joining his scholarship with ours. Unless, of course, Janet read up on him and knew exactly who she was inviting. It could be a little bit of both. Janet is very opportunistic in every best sense of the word–this is what makes her so amazing to watch at work! So it is possible she simply grabbed the bull by its horns. In this case her assumptions make a really interesting case study for analysis. If she did read Dr. Robison’s CV, then her email certainly takes on a different, not any less interesting angle of how interdisciplinary is performed, for example.

For now, I will stash this and add it to the many other notes of this sort on performing the academic.

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I am a methodologist

My first encounter with the word “methodologist” happened when I was young, barely twenty years old. I was standing in front of a three-person jury responding to a question at my final oral exam. I was about to graduate from a small teaching college in the Russian Far East with a degree in early childhood education. One of the examiners, a professor from a much larger, regional pedagogical college, seemed impressed and invited me to further my studies in her program. She prophesied my success a methodologist, a person who planned lessons, procured toys and didactic games, kept current on State educational policies and innovations in preschool pedagogies, and trained teachers. Plainly put, I would be responsible for bridging theory and practice, and the allure was there: I loved children, but struggled to keep order in my classroom. A position as a  thoughtful, caring teacher support seemed a wonderful alternative. But my mind’s eye was already fixed on a new challenge–I wanted to learn English. So less than two years later, I boarded a plane to Florida. The term methodologist sank to one of the darker corners of  my consciousness where it remained as I trained in graphic arts, worked as a designer, had family, went back to school to earn a B.A. in psychology and finally, chose to study research methods and evaluation as a graduate student.

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Coming to Postqual

I consider myself fortunate: unlike numerous other researchers, I had the privilege of taking a “formal” Postqualitative Inquiry course. Those who dabble in postqual came to it on their own.

I am also fortunate because I am a mother of three, a wife, an immigrant, and also a graduate student. Research questions are around me. I never lack ideas for research. Those that make to the surface and are fortunate enough to stand out, make to the next level where they compete with one another, evolve, and ideally, find their way to the pages of my research journal. More often then not, they fizzle out by the time the long pickup line at my son’s school is over. I noticed many of my ideas do not get completely forgotten. They echo and come back to the surface of consciousness in no particular order or pattern and remind me of multiplicities.

At some point, I decided to assemble a few short thought experiments and musings into a book. I envisioned the assemblage as a primer for students new to Postqual.  Of course the idea of a primer reinforces the  method,  a method of instruction in this case, and method, of course, is at odds with the very idea of postqualitative inquiry.  Nevertheless, I did it because I recalled my own struggles with breaking away from the logic behind the more conventional research methods.

I first engaged with postqual in Qualitative Inquiry II class, a year before postqualitative. The word “postqualitative” was never uttered; yet, the course was built around Jackson and Mazzei’s “Thinking With Theory in Qualitative Research.” We went through the chapters sequentially, one by one–Derrida, Spivak, Foucault, Butler, Deleuze, Barad… I thoroughly enjoyed the readings and my professor Dr. Richards, who let me experiment with the format of our weekly class assignment. I dusted off my husband’s huge, long-forgotten set of Prizmacolor pencils and sketched; I put together collages that documented my thought. I had no trouble with the concept of “plugging in” and the theory. In the same class, I experimented with autoethnography and wrote several short excerpts about mother my autistic daughter. I wrestled with painful issues–who I am as a mother and what does it mean to be a good one. I thought about normality and how my daughter and we as a family perceive it. I have made amazing discoveries and deconstructed personal ideas about research and researchers. Somewhere toward the end, I talked to Jenni who pointed out in passing that poststructuralist thought seeks to decenter the human. This struck me like lightning in the clear sky–the entire semester I labored under the thought that qualitative research is all about humanity. How then, do poststructuralist theories fit in my conclusions? I obviously did it all wrong, but somehow, it did not feel like a disaster. That summer, I wrote a lot in my researcher/journal blog and read half of Foucault’s “Madness and Civilization.” In the fall, I took Arts Based Research class and struggled with the very concept of research, particularly, with its purpose. I wondered what counts as data and how can art possibly pass for research. Then I started reading Manning’s The Minor Gesture and came across

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Epistemology as clothes

In the beginning of postqual, I realized that my epistemologies change as I progress through the day and perform the numerous roles as a mother, a wife, a neighbor, a friend, a student, a daughter, and so forth. I have been “sitting” on this discovery for over a month and made it my own. I asserted this belief since then several times and even came up with a narrative: “If I were not a postpositivist in the kitchen, my family would go hungry. If I was not an interpretivist with my husband, I would be divorced. With my kids, I am a constructivist. I have to be!” and so forth… Today, while driving home, I thought that I should call myself on these assumptions so I thought of a study:

Method: progress through the day and take note of what type of knowledge I typically encounter and what epistemological beliefs help me process the information, and in what way. I will create a map, then try to create an outfit, a costume (or at the very least, a hat, or an accessory depending on how strong the belief is) to represent (constructivism? already?) each belief.

If clothes help construct our identities and are the material part in our performativity, then why not tap into the potential or wardrobe research?

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Why I draw to transmediate text

This is not about making art or communicating ideas. I did not draw to express myself. In fact, I do not feel comfortable being judged as an artist because I was not trained in the fine arts.

I look at the sketch and see numerous mistakes. It is obvious I had no idea what to do with the nose… the color and shading look odd…  I used a photograph as a reference, but did not finish the arms…. they are underwater, and I lack the skill to make look believable. Positively, this is not about art or the activity of art making.

I was reading a chapter from “The Minor Gesture,” and became drawn to the concept of body-world split referenced by Manning as a “neurotypical account of experience.” When I think of my body, it is always different from the world. Why not?

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Quality and Good Grades

Growing up in the U.S.S.R., I heard the word “quality” a lot. To an average Soviet family living in a non-competitive economic environment, “бракованые товары” (defective goods) were a fact of life. Quality was a relevant topic.

My father, a professor of auto-engineering, had similar concerns about quality of education. He often sighed that many of his students were not adequately prepared: they lacked both knowledge and  motivation to become the kind of engineers our country needed. I took my father’s comments to heart, feeling anxious: “what if I grow up to be a charlatan?” The thought of disappointing my father, my family, my country, and above all, myself, was painful, so I put my trust in teachers (and later, professors) to teach me all I need to know to become a quality professional. I also found comfort in protocols and methods as I worked to earn my early childhood education, then graphic design, and finally, psychology degrees. I graduated Summa Cum Laude from all three programs, driven by natural love of learning and the fear of being branded a fake.

As a graduate student, I re-examined my fears and questioned my philosophy early in the program. Yet, self-confidence is still stumbling stone. I registered for Interviewing Theory and Practice course as a doctoral student because I recalled my experience in Clinical Interviwing course as an undergraduate psychology undergraduate.

As I progressed through my online psychology program,

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I am a kite

I have been thinking for a while about my lack of focus. I get distracted a lot. I cannot seem to stick to a research project then publish it. I write bits and pieces, I read; I get excited, and at times, I wonder if I am manic. As an emerging researcher, I have been riding this wave of revelations about who I am and what research is. Often, my encounters with people, readings, and movies create a “leavening” where ideas for research, observations, epiphanies seem to resemble bubbles that come up to the surface of the dough with no apparent pattern or predictable rate–they just bubble up.

I have been observing this process; I have been amused by it, and even awed–I feel creativity and life coursing through my veins. I want to create, to write, to draw, to tell amazing stories that are happening in plain sight, through daily living, but are somehow missed in the cacophony of the daily life. I want to research the “now,” the moment…

I have been distracted… Dr. Richards pointed it out on many occasions. Normally, I would be concerned… I would feel anxious–at stake is my CV, my readiness to find that job that will pay my student loans and help ease my children into adulthood. But I have been enjoying the process, and somehow I feel the importance of this leavening experience. Yet, I am starting to question myself, whether I am overindulging in these moments.

Today, I read Leavy’s (Method Meets Art) chapter on visual arts, and somehow I came to a good idea of a visual to communicate my emergence from a commercial artist to researcher–I envision myself flying a kite. I am running as fast as I can, thinking the speed will help it go up. Then it falls to the ground, limp. I pick it up and try running again. This time, a breeze carries it just above my head for several feet. Inevitably, it falls. I pick it up. I run myself to exhaustion. I take breaks. I keep examining it–perhaps, something is wrong with it? I adjust little things–the string that keeps it together, the frame, the shape. I know the color has nothing to do with my kite’s ability to fly, but I keep re-painting it just because. Still, it flies only short for short periods of time, and not too high. I keep picking it up, keep examining it, and keep trying to fly it. I keep trying because this is the kind of person I am–stubborn and maybe naive. I know that all I need is a fresh wind to help raise my kite past the layer of still air, to the heights where currents constantly move. Where they can pick up my kite and sustain it all the way past the clouds. My kite is my confidence. I have it. All I need is the right moment to make it fly.

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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