The Experience Of Disability As Expressed Through Literature and the - - PowerPoint PPT Presentation

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The Experience Of Disability As Expressed Through Literature and the Arts

Johanna Shapiro, Ph.D. University of California College of Medicine April 21, 2001

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Why Literature?

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Students Must Learn Technical And Informational Knowledge

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Whe here i is s the the wisd sdom

• m w

we hav have l lost

• st

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

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Students Must Also Learn Different Kinds Of Knowledge

• Appreciation for other perspectives and points
• f 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

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Literature Can Be Useful In Conveying “Hard-To-Teach” Clinical Competencies

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Why Is Reading A Poem Or Short Story Different Than Reading A Journal Article?

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SCIE CIENCE CE CAN CAN ONLY LY AS ASCE CERT RTAIN IN WHAT WHAT IS IS, BUT BUT N NOT WHAT WHAT SHO HOULD ULD BE

BE

• Albert Einstein

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Two Modes of Thinking:

Logico ico-Scient cientifi ific and Narrati tive

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QUESTION: What is truer than the truth? ANSWER: A good story

• Jewish proverb

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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

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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

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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

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NOT EVE VERY RYTHIN ING T G THAT HAT CO COUN UNTS CAN CAN BE BE CO COUN UNTED

• Denis Burkit, M.D.

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How Should We Position Ourselves in Relation to the Patient-Other?

Logico-scientific: emphasis is on

• bjective stance, detachment, distance

in professional relationships

Narrative: requires emotional

engagement and presence in professional relationships

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Whate hatever i is s re real al has has a a meaning

• Michael Oakeshott

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Why Study Disability?

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An Unglamorous Aspect

• f Medical Practice?

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Doctors…may have trouble dealing with patients [with disability], whose disease in its intransigence defeats their aims and mocks their skills.

• Nancy Mairs

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Disability Studies as Metynomy

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What are some important health provider-patient issues that can be approached through literature?

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Disability as Otherness

• Psychological function of
• therness
• Societal function of otherness

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What is Normal?

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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

• u 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

• t 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

• f

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

• f th

the stutte tutterer, The There The flick flickering o

• f

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.

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Emptiness … and Fullness

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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

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Loss…

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Strok roke P Patient nt

So Someone cam came e in to ask ask how

• w are y

you

• u
• nl

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

• nl

nly I y I nev never er got p

• t past

t th the vow

• wel

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

• oked so
• 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

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That That Tr Treache acherous L Less-Than han-Hu Huma man/ More

• re-Than

han-Hu Huma man C Continuum

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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

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The he ill pers person n may no not f feel eel like a e acting ng good

• od-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

• rk to

k to hol

• ld th

this appea ppeara rance i in n pl place. e.

• -Arthur Frank

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I have e come come to to rea realize h e how

• w 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

• ur

r probl roblem, ou

• ur

r persona

• nality d

ty defect, o t, our ur weakne ness…T …To

• empha

phasiz ize in indiv ivid idual pe l perso sonal q al qualit alities as th the e rea reason

• n for s

for succe ccess i in ov

• verc

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

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The Health Provider- Patient Relationship

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Isolation vs. Community

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Stages of Suffering

• Chaos and Isolation
• Lamentation
• Solidarity with others

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Solidarity in the Professional Relationship

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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

• f 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

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Learning To See More Clearly

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“We al

all have have disab sabilities,

• nl
• nly som

y some of

• f us

us don’

• n’t

know know it” t”

• -second year medical student

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Prot

• tect

t Your

• urself From
• m This

Prote

• tect y

you

• urse

self from

• m th

this, s, th the si sight

• f
• f th

the l lumpish sh wom

• man

an i in plate ate glass ass lab aboring to to push sh herse self al alon

• ng

in h n her c coat, , in n the s sun. n. She l look

• oks to

s to be a a wom

• man

an of

• f a

a certa tain ag age, a a nice w wom

• man

an, but f t for

• rlor
• rn, w

with th too too much p pai ain in h her f fac ace to to be ou

• utd

tdoor

• ors. You
• u l

look

• ok aw

away ay, th then sw swiftl tly b bac ack, to to se see her str struggle with th th the c chai air

• u
• utsi

tside th the heavy avy ban ank d door

• or, hol
• lding h

her pac ackages upright in he her l r lap w with he h her t r teeth. She star starts ts to to mutte tter, h how

• w difficult

th things s ar are. For

• r an

an instan stant you

• u al

allow

• w you
• urse

self to to feel her d dread ad, h her effor

• rt

t not

• t to

to becom

• me

an anoth

• ther c

crazy azy crying on

• n a

a Be Berkeley str street. t. She i is s not

• t what

at you

• u feel y

you

• urse

self to to be, but w t what y at you

• u se

see you

• u ar

are, reflec ected ed i in the world’s unyiel elding s g surface ces. You

• u k

know

• w th

that at you

• u can

an n neve ver l leave ave h her, n now

• w.
• -KAREN FISER

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Learning from the Other

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“Close your eyes now,” the blind man said to me. I did it. I closed them just like he said. “Are they closed?” he said. “Don’t fudge.” “They’re closed,” I said. “Keep them that way,” he said. He said, “Don’t stop now. Draw.” So we kept on with it. His fingers rode my fingers as my hand went over the paper. It was like nothing else in my life up to now. Then he said, “I think that’s it. I think you got it,” he said. “Take a look. What do you think?” But I had my eyes closed. I thought I’d keep them that way for a little longer. I thought it was something I ought to do. “Well?” he said. “Are you still looking?” My eyes were still closed. I was in my house. I knew that. But I didn’t feel like I was inside anything. “It’s really something,” I said.

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