Last semester, for my interview and research paper in Medical and Psychosocial Aspects of Disability, I deeply appreciated learning about schizophrenia and the experiences of people diagnosed with schizophrenia. So, when I saw Esmé Weijun Wang’s The Collected Schizophrenias on the suggested reading list for this reaction paper, I immediately ordered it. Wang opens up her life and learning in a series of memoir-essays. With her first two, “Diagnosis” and “Toward a Pathology of the Possessed,” she grounds the reader in the middle of a venn diagram: the overlap of her life’s world and the world of schizophrenia and its related disorders. From there the essays venture out into more and more of her life, with and without direct reference to schizoaffective disorder, yet never beyond its reach. How much of her life is and isn’t her diagnosis? Is there an undiagnosable self or soul underneath the self that has schizoaffective disorder? These are the kinds of recurring questions that, along with the arc of her life and her measured, pearl-strewn writing style, help to weave all the essays together.
Wang touches on topics we have already started covering in this course -- such as media portrayals of people with disabilities, the history of treatment and attitudes towards people with disabilities, and relevant U.S. and California state legislation -- and I’m sure I will continue to hear her voice and stories echoing in the upcoming modules. The subjects I would like to explore in this paper are person-first language and level-of-functioning language.
Person-first language
Without undermining the importance of person-first language, Wang wrestles with its meaning in her life. She is interested in how it allows for a vision or idea of herself without her health condition. “‘Person-first language’ suggests that there is a person in there somewhere without the delusions and the rambing and the catatonia,” she writes in “Yale Will Not Save You” (Wang 2019, p.70). She returns, “But what if there isn’t” (Wang 2019, p.70). Or, in “Perdition Days,” Wang opens the essay with an introductory fragment written during her experience with Cotard’s delusion. She calls out to us, or herself, “I am in here, somewhere: cogito ergo sum” (Wang 2019, p. 145). She goes on to describe her training as an anti-stigma speaker: “We speakers were told that we are not our diseases...Our conditions lie over us like smallpox blankets; we are one thing and the illness is another” (Wang 2019, p.145).
The heart-beat of person-first language is dignity, respect, honoring the full personhood of each individual. Wang never questions that. I expect Wang would wholeheartedly endorse the Disability Language Style Guide’s advice for writing “a person with schizophrenia” rather than “a schizophrenic” (ncjd.org 2018). Like the Style Guide, she directly calls out the “ableist and inaccurate” (Wang 2019, p. 11) vernacular use of ‘schizophrenic’ as “a synonym for something inconsistent or contradictory” (ncjd.org 2018). However, because her experience of schizoaffective disorder is so central to herself, she claims the label “schizophrenic” at some level (Wang 2019, p. 71). On the other hand, she certainly recognizes herself as bigger than or beyond this label; schizoaffective disorder both is and isn’t a part of her. Wang finishes her final essay, “Beyond the Hedge”: “I tell myself that if I must live with a slippery mind, I want to know how to tether it too” (Wang 2019, p. 202). Her “slippery mind” is not her, exactly, it is something she “lives with.”
Part of her connection to the identifier, “schizophrenic,” comes from the usefulness she has found in diagnostic labels. “Some people dislike diagnoses, disagreeably calling them boxes and labels” she writes in her opening essay “Diagnosis,” “but I’ve always found comfort in preexisting conditions; I like to know that I’m not pioneering an inexplicable experience” (Wang 2019, p. 5). She explains further, “A diagnosis is comforting because it provides a framework -- a community, a lineage -- and, if luck is afoot, a treatment or cure” (Wang 2019, p. 5). Throughout the essays, Wang explores her rollercoaster diagnostic history, from a bipolar diagnosis to schizoaffective disorder to PTSD to Lyme disease. With each twist and turn there are new doors, new answers, and new questions.
Wang’s dance with person-first language encourages me to stay open to each person’s experience of referring to theirself vis-a-vis their health condition. As a rehabilitation counselor, I will need to be committed to and always ready with person-first language, while at the same time open to following the lead of each client as they describe their identity within and without their diagnosis.
Level of Functioning
In her essay, “High Functioning,” Wang offers an explanation of her vocational situation that was revelatory for me. She recounts trying to explain to her insurance company, with regard to disability benefits, that she “can’t work at McDonald’s, but [she] can run a business based on freelance work” (Wang 2019, p. 50). A so-called low-skilled job like working fast-food, with its time pressure and inflexibility, would likely trigger or worsen her symptoms. A so-called high-skilled job like free-lance writing and research gives her the flexibility and freedom to work when she can in a way that is healthy for her. Just because Wang can fit with a “high-skill” position, does not mean that she can fit with a “low-skill” position. Our hierarchy of skill is not cumulative like a staircase, rather it is market based and leads us to take for granted all the skills involved in each job. Wang shows me that a person’s “level of functioning” is not the only factor, not even the key factor, that predicts the person’s ability to fit into a certain type or class of jobs.
Wang describes how the level of functioning concept can be problematic in other ways as well. While getting treatment (involuntarily -- a terrible experience for her) in the hospital, she found that a “natural hierarchy” arose among the patients based on “our own sense of functionality and the level of functionality perceived by the doctors, nurses, and social workers who treated us” (Wang 2019, p. 47). She goes on to say, “High-functioning patients had the respect of the nurses, and sometimes even the doctors” (Wang 2019, p. 48). Outside the hospital, as well, she realizes she “cling[s] to the concept of being high-functioning,” because of the implicit social hierarchy. (Wang 2019, p. 49). She is already ‘one-down’ by way of her disability, and down again in the psychiatric hierarchy of diagnoses (schizophrenias being near the bottom, in her experience), not to mention her other intersecting marginalized identities (Wang 2019, p.48). At least, she says honestly and sardonically, she is not on the “low” end of her low-respect, low-success diagnostic group (Wang 2019, p. 49).
Wang describes our society’s definition of high-functioning as being able to “pass in the world as normal,” with normal-ish behavior and social interaction, and above all, with a job, or being able to hold down a job (Wang 2019, p.51). High-functioning seems to be something of a backhanded compliment; “you’re doing well...for a crazy person.” Why do we need to scale or rate people so generally and completely? Does “high/low functioning” correlate with intelligence or another broad group of skills? In a 2015 article in Schizophrenia Research, Eva Alden and colleagues found that, after dividing a group of people with schizophrenia into high and low community functioning sub-groups, the two groups’ IQ’s did not differ (Alden et al., 2015). The main neurocognitive skill that distinguished the two groups was verbal working memory.
Following Wang’s lead, I am inclined to think that the language of high/low functioning does more harm than good when used in a global sense. I am interested to see how this issue may come up in our course. Wang’s stories and analysis opened me up to the problems of labeling people as high or low-functioning and using those labels to inform rehabilitation counseling.
Conclusion
Several other topics in Wang’s essays jump out to me as very relevant to our coursework: her terrible experiences being involuntarily hospitalized -- particularly the staff’s unwillingness to believe her about almost everything; comorbidity in her experience of mental illness; her spiritual journey and search for “explanations” alongside her scientific search for “causes” (Wang 2019, p.24); the way mental illness has shaped her family and relationships; her experience of receiving (and not receiving) mental health support while in college. Wang also illustrates but doesn’t dwell on the specifics of her psychotic episodes. Life goes on, within and without reality. I expect that Wang’s The Collected Schizophrenias will continue to give me context for upcoming information and topics in this class.
References
Alden, Eva C, Cobia, Derin J, Reilly, James L, & Smith, Matthew J. (2015). Cluster analysis
differentiates high and low community functioning in schizophrenia: Subgroups differ
on working memory but not other neurocognitive domains. Schizophrenia Research, 168(1), 273–278. https://doi.org/10.1016/j.schres.2015.07.011
National Center on Disability and Journalism (2018). Disability Style Guide. NCDJ.org.
https://ncdj.org/style-guide/#S
Wang, Esmé Weijun (2019). The Collected Schizophrenias. Graywolf Press.
Intro: why picked the book, brief description
Diagnosis
high/low functioning
Involuntary hospitalization
Comorbidity and intersectionality
how the content relates to this course such as, historical, foundational, vocational, legal and ethical aspects of disability culture and rehabilitation counseling, environmental and attitudinal barriers for people with disabilities, etc.
Historical - diagnosis, DSM
Ongoing research and development
Stigma, social barriers
Comorbidity
Key topics/themes for paper
Diagnosis, neutrality, identity, person first language
Level of function, vocational
Involuntary treatment
Comorbidity, intersectionality
The Collected Schizophrenias
Diagnosis
Archetypal, “gone,” gibel - doom, catastrophe
“Painful for others”, resists sense, stats
Journey to diagnosis
Finds comfort in diagnosis - 5
Literature, memoir
DSM
Kraepelin and Bleuler
Use of schizophrenia in vernacular (split mind, stigma)
NIMH and DSM issues
Running a SCID
Diathesis-stress
Risk factors for her and mother
Fire type
Lyme disease
Explanations rather than causes - 24
Evolutionary persistence
Art
Toward a Pathology of the Possessed
Murder of Malcoum Tate
Family felt out of hope, feared for life
Solomon - Far from the tree - like Alzheimer’s - deletion rather than replacement
Frequent story or way of looking at schz
NAMI - support for families, AB 1421, involuntary treatment if poses a danger, 5150’s
Exorcist
Unless you have money, no options for long term care
SOLVE antistigma
Level of insight, taken over
Terror of involuntary treatment, don’t know how long, etc, cannot be trusted
High Functioning
Antistigma speaking
Natural hierarchy in hospital, sense of functionality and normalness
Who can and cannot be gifted
Only see schzi or psychosis mentioned in context of violence
Type of job - low level, upper level, etc - has more to do with type of stress and control, schedule, social scene
High-functioning w unpredictable and low functioning illness 50
Pass
Valuing productivity
RAISE, OnTrackNY
“A uniform for a battle with multiple fronts” 53
Weaponized glamoour
Necessary concessions to my craziness 56
Radical and visceral imbalance of power 57, inpatient, illness in human form
Yale will not save you
Parents’ story, impt of education, acceptance to Yale, good and bad of home life
“Kill ourselves together”
Cotton Mather, yale and witch hunts
Summer before left for new haven, diag with bipolar (manic episode)
Psychiatrist - focused on mother
Constant agony
Feeling special
As-Am performance art group - watch out for mental hygiene dept; involuntary hospitalization, “neer tell them you’re thinking about killing yourself, okay?”
The shakespeare lady, Chris’ reassurance
Experiences of students expelled, mistreated, not allowed to return
I’m still trying to figure out what “okay” is, particularly whether there exists a normal version of myself beneath the disorder 70
Person first language
Two point restraint
How Colleges Flunk Mental Health
The Choice of Children
Afraid of awakening desire for children
Camp Wish
Bipolar mysterious in children, comorbidity, hard to diagnose kids
Potential complications to have kids, b/c of meds, care taking, passing on
But could be a great mother...
Stuart, bullying, finding some fun
We could have a kid like that. (taken in neg and pos)
Is my ovary ok?
On The Ward
Involuntary commitment
Terrible food, supervision, level 1 privileges
Asylum, sanitarium, Nellie Bly (ten days in a mad-house)
“Lack of insight”
98 “you will not be believed about anything”
Things will be believed about you that are not at all true
“Unsafe” double as suicidal
101 proclamations of insanity are the exception to the rule
David Rosenhan 1973 - like Bly
Bly - easy to get in, hard to get out
Absolute terror of not knowing when or if going to let out
Average stay 10 days, supposed to stabilize and set up for recovery
Maisel - Bedlam 1946
Decision to do away with mental hospitals
108 - “never felt useful to me”
5150’d,
“I don’t know how anyone gets better in that place”
1.3 mill w MI incarcerated
110 - “not one of my three hosp helped me”...
The Slender Man, the Nothing, and Me
Two 12 year-old-girls stabbed, caught up in imag/delusion w/ slender man idea, stabs friend and almost kills, prosecuted as adults
Diagnosed afterwards
Imag world with never ending story, very serious, the Nothing, this is real
Internet
Anchor to reality
Kids genuinely fear boogeyman
Reality, On-Screen
Going to see Lucy, hurtling into the reality of the film 124
With friends who know her well, attentive to her
Didn’t always recognize the feeling of becoming psychotic, no clear checklist, can seldom describe until after the fact, agitation...something wrong...then completely wrong
Shows that help - bakeoff
Movies - 128 - enforce stories they tell, capacity for empathy
Beautiful mind - not great depiction of schzi but better for delusion, boundaries
John Doe, Psychosis
Hallucinations - seeing John
HS boyfriend who raped and abused her
Trauma and schizoaffective disorder
Developed PTSD 2014
Lit tastes switched to violence and gore
Links to psychosis
Thought disorder
Emdr attempt
Delusions
Reality checks
Was it him?
Catatonia
Inept and poorly received testimony of what happened, some people not believe, 141, keep it to myself now
Impairments in Social Cognition
Moods, sorry not sorry
Hoping forgiveness bring peace (forgiveness and healing not a onetime deal 143)
143 Great British Bake Off
Delusion that “free of him” and safe
Perdition Days
Cotard’s delusion
We are not our diseases?
“There was no solution” 147 saw psychosis oncoming
Related to Capgras delusion (unable to feel emotion about familiar faces)
147 - flip attitude
148 - “my solid belief”
Delusions harder to medicate away than hallucinations
Questions about percentages 150
From optimistic afterlife to perdition, psychic agony
Decision to enter world of Gilead, 152, hell/perdition
Lost lots of weight, no rhythm, psychic pain
ECT consult
Notion of perdition never left me, but degree to which i despaired about it did 157
L’Appel du Vide
Francesca Woodman
Suicide demands a narrative but rarely gives on 162
Recognition
Self-portraits during periods of psychosis
165 - “with chronic illness, life persists astride illness until unless the illness spikes to acuity
Advocating for net under golden gate bridge
Disability benefits ending
169 “oldself appalled to see limitations of new life”
Chimayo
Exhaustion, weakness of muscles,
Autoimmune disorders source of much MI?
Hope in neurologist but no luck
Lyme-community LLMD (lyme-literate medical doctor)
173 - primary identifiers...this changes story/understanding of self
Chronic Lyme disease a kind of belief system (International Lyme and Associated Diseases Society)
Yet to find someone whose insurance covers treatment
Morgellons - creepy crawly disease
Ready to try to believe him
“Linked by desperation based in suffering”
Considered becoming Catholic
El pocito
Autoimmune and risk for schiz
182 - hope vs faith
“Always looking for a way out” 183
Disappointment with referral
Beyond the Hedge
Experience of seeing through eyelids
Oracle and tarot cards
Sch doesn’t require “distress” for diagnosis
Spiritual gifts?
“Belief does not simplify life” 192
Liminal and medial, borderland
194 looking for a container
Suffering will be of use (meaning - Frankl)
Rational, vs irrational, vs nonrational
Kidnap the senses (hallucinations) 197
Tie around ankle, to keep from “slipping”
Caution against dithering in other realms
201 - something to do when it seems nothing else to be done
Last big delusion episode four years prior
“Tread carefully” to stay where
Want to know how to tether slippery mind
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