The Experience Of Disability As Expressed Through Literature and the Arts Johanna Shapiro, Ph.D. University of California College of Medicine April 21, 2001
Why Literature?
Students Must Learn Technical And Informational Knowledge
Whe here i is s the the wisd sdom om w we hav have l lost ost in kno in knowle wledg dge? Wh Where re is is t the kno knowle wledge we we h have ve lo lost in in info inform rmatio ion? n? - T.S. Eliot
Students Must Also Learn Different Kinds Of Knowledge • Appreciation for other perspectives and points of view • Understanding of illness within the context of the lived life of the patient • Ability to listen as well as talk to the patient • The capacity for empathically imagining the patient’s experience
Literature Can Be Useful In Conveying “Hard-To-Teach” Clinical Competencies
Why Is Reading A Poem Or Short Story Different Than Reading A Journal Article ?
SCIE CIENCE CE CAN CAN ONLY LY AS ASCE CERT RTAIN IN WHAT WHAT IS IS, BUT BUT N NOT ULD BE BE WHAT WHAT SHO HOULD - Albert Einstein
Two Modes of Thinking : Logico ico-Scient cientifi ific and Narrati tive
QUESTION: What is truer than the truth ? ANSWER: A good story - Jewish proverb
What Is Important About Experience? (How Can We Best Understand the Patient’s Reality?) Logico-scientific : particulars of personal experience are eliminated in favor of abstractions, generalizations, systems of classification and diagnosis Narrative: emphasis is on particulars of individual experience
We d do no not se see t thin ings the way ay the hey a y are We se see th thin ings the w way ay we ar are - Anais Ninn
Whose Point Of View and Voice Are Important?: Logico-scientific : patient’s point of view is subjective, therefore suspect; patient’s voice disappears from the medical record Narrative : patient’s point of view and voice are essential; multiplicity of voices in clinical encounter recognized
NOT EVE VERY RYTHIN ING T G THAT HAT CO COUN UNTS CAN CAN BE BE CO COUN UNTED - Denis Burkit, M.D.
How Should We Position Ourselves in Relation to the Patient-Other? Logico-scientific : emphasis is on objective stance, detachment, distance in professional relationships Narrative : requires emotional engagement and presence in professional relationships
Whate hatever i is s re real al has has a a meaning - Michael Oakeshott
Why Study Disability ?
An Unglamorous Aspect of Medical Practice?
Doctors…may have trouble dealing with patients [with disability], whose disease in its intransigence defeats their aims and mocks their skills. - Nancy Mairs
Disability Studies as Metynomy
What are some important health provider-patient issues that can be approached through literature ?
Disability as Otherness • Psychological function of otherness • Societal function of otherness
What is Normal?
The H The Handicapp pped ed 1. The mis missin ing le legs 5. At At Cr Creation, Of th the ampute tee God God tol told th the deaf, Are e away s somewher ere “O “Only y you ou will hear Winn nning a a sec ecret et race. e. The The so song g of the he st stone.” 2. . The The bl blind man an has al has always st stood 6. Da Dare not ot ask Bef efore e an n eno enormous blackboard, What the e dumb Wait iting fo for the fir first Have e been t een told to keep s keep sec ecret et Scr crawl o of f lig light, That hat fine 7.When the e epi epilep eptic Dus Dusty c chalk. Fall lls in in a fit fit, He is ascend ending ng 3. 3. Here To To the he he heav aven of ear arth. The repeti titions of of th the stutte tutterer, The There The flick flickering o of f the stars. --Philip ilip Dacey 4. Master of f illu illusion, The The par aralytic al alone moves. All ll els lse is is still. ill.
Emptiness … and Fullness
Fin inge gers, Fis ists, Ga Gabrie riel’s Win Wings gs My voice, plucked from the air, clasped in the interpreter’s hands: fists bloom, close, pulse of hothouse flowers; supple fingerpuppet dancers move to unsounded strains Watching the deaf girl listen, I think there is more to words than sound ever knows, brimming handfuls of speech tempered by secondhand grace. The word, unutterably, made flesh: Fingers flutter, hover, fold, The whisk of Gabriel’s wings. -- Michael Cleary
Loss…
Strok roke P Patient nt So Someone cam came e in to ask ask how ow are y you ou onl nly I y I co coul uldn dn’t quite h hear t r the word rds, I t I thoug ught he w e was as ask asking ng who who. who who are y you? so so I I st star arted t to say say my y nam name’s e’s Jo Jorda dan onl nly I y I nev never er got p ot past t th the vow owel I’m I’m Jo Joe just ust Jo Joe call ll me me Joe th then I s sto topped to th to think maybe aybe I I real eally am am some meone e els lse maybe aybe al all t this n s nev ever er hap appened my friend l look ooked so o str trange to to me till ill I fe felt lt h his is h hand— his is hand t took k min mine an and m d my y hand and sh shook. -- --ROC OCHEL ELLE R RATNE ATNER
That That Tr Treache acherous L Less-Than han-Hu Huma man/ More ore-Than han-Hu Huma man C Continuum
Spastics They are not beautiful, young, and strong when it strikes, but wizened in wombs like everyone else, like monkeys, like fish, like worms, creepy-crawlies from yesterday’s rocks tomorrow will step on. Hence presidents, and most parents, don’t have to worry. No one in congress will die of it. No one else. Don’t worry. They just hang on, drooling, stupid from watching too much TV, born-that-way senile, rarely marry, expected to make it with Jesus, never really make it at all, don’t know how, some can’t feed themselves, fool with, well—Even some sappy saint said they look young because pure . --Vassar Miller
The he ill pers person n may no not f feel eel like a e acting ng good ood-hum humore red a d and positive; muc uch o h of th the ti time me i it t ta take kes s hard wor ork to k to hol old th this appea ppeara rance i in n pl place. e. -- Arthur Frank
I have e come come to to rea realize h e how ow disto torted a and unrep representative th the e succe ccess s stori tories rea really y are… re…if we we fa fail, it t is ou our r probl roblem, ou our r persona onality d ty defect, o t, our ur weakne ness…T …To o empha phasiz ize in indiv ivid idual pe l perso sonal q al qualit alities as th the e rea reason on for s for succe ccess i in ov overc ercoming dif ifficult lties is is se self lf-serving for th for the e in indiv ivid idual an l and so socie iety. -- Irving Kenneth Zola
The Health Provider- Patient Relationship
Isolation vs. Community
Stages of Suffering • Chaos and Isolation • Lamentation • Solidarity with others
Solidarity in the Professional Relationship
IRENE After the third stroke, her words fell off to a few soft syllables. When I enter the room and enter those red-rimmed eyes that can’t help looking toward the left, she cocks her jaw and her cheekbones swell. With what looks like weakness, she wobbles her left hand to my wrist, but that grip is the grip of a woman who clings by a root to the face of a cliff. When she speaks, her words are small stones and loosened particles of meaning that tumble to their deaths before my ear is quick or close enough to save them. Irene, tell me again, I say, after the words in her bits of chopped breath are gone. But George takes his cap from my desk and puts it on his head, and says Her gulps don’t make no sense. -- Jack Coulehan
Learning To See More Clearly
“ We al all have have disab sabilities, onl only som y some of of us us don’ on’t know know it” t” -- second year medical student
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