Gleason the Creation of Meaning

8/2/2019 Gleason the Creation of Meaning

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Australia and New Zealand Journal of DevelopmentalDisabilities1993, Vol. 18, N o. 3, 157-167

T H E C R E A T I O N O F M E A N I N G : W H A TP E R S O N S W I T H S E V E R E O R

P R O F O U N D M U L T I P L ED E V E L O P M E N T A L D I S A B IL IT IE S

D O I N C O N T E X TJ o h n J . G l e a s o n IRhode Island College

An alys is of th e interactional patterns o f 64 residents of a state institution that reveals personswith sev ere or profound multiple developmen tal disabilit ies learn m ean ing through theunderstanding of situational eve nts with others. Observation and explanation o f the ability o fthes e per son s are grounded in differentiating three behavioral patterns in the context ofinteractionat eve nts: (1) patterns of interference; (2) patterns o f participation; (3) patterns in

ambiguity. Ea ch pattern is disc usse d n terms o f shifts in the relationship of form, function, andcontent . Study of the social an d cul tural processes o f persons w ith severe or profound mult ipledevelopmental disabilit ies who live together is significant for the determination o f patterns intheir behavioral repertoires ex pre ssive of the their ability. Professional understanding o f thesocial and cultural processes unde rlying their comm unication and interaction w ith others canreveal a n underlying totality in their ability. Th e definition and differentiation of the patternsin their performance and the clues offered for interpretation o f mea ning n their behavior aresugg ested as a theoretical framework to approach grounded unders tanding of w hat they doas the basis of educational and therapeutic intervention.

P e r s o n s w i t h s e v e r e o r p r o f o u n d m u l t i p l e d e v e l o p m e n t a l d is a b i li t ie s p r e s e n t a p a rt i c u la r c h a l l e n g et o t h e r e s e a r c h e r i n t e r e s t e d i n t h e w a y s i n w h i c h i n d i v i d u a l s w i t h p a r t i c u l a r d i f f e r e n c e s b e c o m ek n o w n a n d u n d e r s to o d . T h e m e t h o d s a v a i la b l e to s t u d y t h e s e p e r s o n s e n t ai l a v a r ie t y o f d i f f e re n tm e t h o d s f o r d e s c r i p t io n a n d e x p l a n a t i o n . E a c h m e t h o d e n ta i l s a p a r ti c u l a r w a y o f s e e i n g , u n d e r s l a n d -i n g , a n a l y s in g , a n d e x p l a i n i n g . A l t h o u g h t h e p u r p o s e a n d t h e f o c u s o f t h e m e t h o d o l o g y w i l l v a r y ,u n d e r s t a n d i n g a n d m a k i n g s e n s e o f w h a t i s g o i n g o n i s t h e s u b j e c t a n d t h e o b j e c t o f e a c h f o r m o fi n q u i r y .

T h e u n d e r s t a n d i n g o f p e r s o n s w i t h d e v e l o p m e n t a l d is a b i li t ie s e v o l v e d h i s t o r i ca l l y , b a s e d o n t h ea p p l i c a t io n o f s c ie n t i f ic r e s e a r c h t o t h e s t u d y o f e a c h a s p e c t o f t h e ir li v e s . O u r k n o w l e d g e o f p e r s o n sw i t h d e v e l o p m e n t a l d i s a b i l i t i e s i s p r i m a r i l y b a s e d o n t w o s o u r c e s o f i n f o r m a t i o n : ( 1 ) m e d i c a li n t e rp r e t a ti o n , t h a t i s , t h e c l a s s i f ic a t i o n o f t h e h a n d i c a p p i n g c o n d i t io n ; a n d ( 2 ) p s y c h o l o g i c a l a n de d u c a t i o n a l s t a t e m e n t s a b o u t c h a r a c t e r i s ti c s o f t h e c o n d i t io n a n d r e s u l t i n g c a t e g o r i e s o f d e f i c i t a n da b i li ty . I n b o t h i n s t a n c e s , i n te r p r e t a ti o n s r e l y o n t h e c l i n ic a l m o d e l ' s c o n c e p t s a n d a s s u m p t i o n s a b o u tt h e i n d iv i d u a l u n d e r s t u d y . M e d i c a l u n d e r s t a n d i n g i n te r p re t s s y m p t o m s i n t e r m s o f a n a t o m i c a l

IAddress for correspondence: John J Gleason, Associate Professor, Departm ent of Special l?AucationRhode Island CoIIege, 6(30 Mt. Pleasant A venue, ProvidenceRhode Is land 0290 8 USA


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158 THE CREATION OF MEANING

structures, physiological func tioning , and pathological processes in order to classify sym ptom s,prescribe treatment, and d eterm ine prognosis (Erickson, 1958). Clin ical think ing is also the basisof psychological and edu cationa l und erstand ing that proceeds from a sim ilar premise, that is , todete rmin e dev elop me ntal characterist ics as states, s tages, and sk il ls of the ind ividu al as the basis forin tervent ion .

The s tudy o f persons wi th severe or profound developm enta l d isabi li ties has t radi t ional ly beencondu cted in c l in ica l, quant i ta tive , and exper im enta l mod es (M ann & Sabat ino , 1973). In a reviewof 500 emp ir ica l s tudies of the severe ly and p rofoundly me nta l ly retarded conducted betw een 1955and 1974, Berkson and Lan desm an-Dw yer , (1977) found tha t most descr ip t ion and assessmentwere based on formal tes ting of behaviour in four areas : the corresponden ce between medica lsyndrom es and b ehaviour , the leve l of sensory and perceptual funct ioning , the measu re ofintel l ige nce on standardized tests and the rat ing of adaptive behaviours. F if th was a search fo renv i ronm en ta l f ac to rs t ha t evoked a nd m a in t a ined a behav ioura l r e sponse . Behav iour wasunders tood in te rms o f prescr ibed labels and def in i t ions of m edica l , psychologica l, and ed ucat ionalcategories and norm s.

Other research methods co mm only used for s tudying persons wi th m enta l re tardation inc ludestandardized psyc hom etric inslrum ents, ask performance tests , quest ion naires, nterview s, adaptivebehav iourmeasures , and c l in ica l udg me nts found to be appropriate wi th th is le velo f re tardation anddisabil i ty (Sackett , 1978a, 1978b). Th e appropriateness of these measures with person s with severeor profo und men ta l re tardat ionwas ques t ioned by Sackett because they d id n ot accura te ly predic t theflai l range o f behav ioura l adaptat ion to real l i fe situations. K now ledg e gaine d in this m an ne runw i t t ingly n terpreted the behav iourof persons wi th severe or profound nte l lec tuald isabi l i ty in theresearcher ' s ow n ca tegorica l terms. The dom inance of the c l in ica lor ienta t ionhas t ed to a s ing~ ar i t yof perspect ive wi th th is popula t ion , even as ne w requirements for care an d educat ion are mand ated .

Th i s pape rp rov ides a f r am ew orkfo r unde r s t and ingpersons w i th severe orpro found deve lopm en-ta l d isabi l i ties . In s tudy 'rag th e ev eryday f ives o f persons w i th severe or p rofound mu l t ip le develop-m en tal disabil it ies, th e challe nge posed is to loo k anew at how the r ich m edica l , psychological ,edu cation al and therapeutic cl inica l inform ation conlribu tes to ou r understan ding of these persons.Def in ing the con l r ibu t ionand re la t ionship of the informat ion o the und ers tanding of everyd ay l i feeve nts with in a theoretical fram ew ork helps to place the disab il i ty in a differen t perspective. Th eabi l i ty of t l ie person i s then m ore readi ly perce ived. Scienti fic inqui ry in to the l ives o f persons w i thprofoun d m ul t ip le develop men ta l d isabil it ies involves unravel l ing patterns of co mplex hum anphenom ena in t he con tex t o f i n t e r ac tiona t even ts . The bas i s o f t ha t i nqu i ry is t he d i scove ry o f t hem ea n ing in t he i r behav iour .

The chal lenge is to un ders tand hum an dif ferences we do n ot share . Pau l Deis ing (1971) of fers astart ingp o i n t - - ourselves. He states:. . . t h e only nstrument hat s goodenough or the studyofhumanbeings s manhimself.Only hehumanobserveris perceptivee~ough o recognizeand appreciate he full angeof hurnanaction,only he thinker s able o drawtheproper m plications rom hecomplexdatacoming romhuman ystems...(p.141).HistoricaUy, person s with deve lopm entaldisabili ties h ave be en understood prim ari lyby com par i-son to person s withou t disabili ties. Ag e and grade eq uivale nts and d evelop men tal stages are the

cu n~ nt bas is for com par ison in a lon g l i s t of predecessors. Evalua t ion of the appropriateness of the i rbehav iour i s of ten assessed by socia l and cu l tura l norms.


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GLEA$ON 159

The compar ison wi th o thers i s a r t i f ic ia l . The cha l lenges faced by persons wi th profoundm dt ip l e deve lopmen ta l d i s ab il i ti e s i n unde r s tand ing t he w or ld a round them a r e un fam i l i a r t o u s .W e do not k now the i r deve lopm enta l pa th . T hei r exper ience i s d if fe ren t.

The ma tu r i t y o f ou r und e r s tand ing o f hum an na tu r e is t es ted by t he deg ree t o wh ich w e caninves t iga teexper ience and to le rate the am bigui ty expressed in the rea l i ty of the l ives of persons w i thdev elopm ental disabili ties. To see relat ionships is no t the sam e as isolat ing variables and seek ingcor re la t ions ; ra ther i t i s to explore the m ean ing of an ev ent in a spa t ia l and tempora l contex t tha trespects the ir pat terns o f interact ion , com m unic at ion ,an d p articipation.

A l though a connec t i on to pe r sons w i th deve lopm en ta l d i s ab il i ti e s m ay be mo re d i f f icu l t t oes tab li sh , the concep t of d i f fe rence i s fami liar . W e k now tha t ind iv idua lshave d is t inc tdifferences. Inhum an na tu r e , we a r e connec ted a n d b o u n d o g e t h e r in v e r y u n d a m e n t a lw a y s .W h a t a re t he c o m m o nelemen ts tha t conn ec t persons w i th severe and profound m ul t ip le deve lopm enta l d i sab i li t ies to u s?

To unders tand persons d i f fe ren t f rom ourse lves i s no t jus t a cha l lenge to see b eyo nd the i rdisabil i t ies , o sen se orde r in disorder , to unde rstan d wi thou t an u rgency to com pare . The behav iou r sof person s with d evelo pm ental disabili ties are no t isolated entit ies , separate an d dist inct from othe rhum an qua l i t ies , character is tics , and expressions . To unders tand dem ands co mp rehens ion of thewho le of what they am doing in context, no t jus t f ragments of behaviours or aspec ts of ind iv id ua lactions.

D i f f e rence ha huma n na tu r e i s pa r t o f t he end l e s s man i f e s t a ti on o f va r i e ty i n hum an fo rm andcontent . Dif fe rences and var ia t ions a re express ions of hum an dynam ics . H um an d i f fe rence does no tr evea l i t se l f in d i cho tomies o f wha t t he pe r son can and canno t do , no rma l and abno rma l , ab l e anddisabled . The cha l lenge to g ive m ean ing to the i r behav iour i s to see , unders tand , and exp er iencecom plex hu m an pheno m ena outs ide of c l in ica l d ichotomies for explana t ion .

Un ders tanding of persons w i th deve lopm enta l d isabi li ti es has e volved based on the m ethodsava i lab leand the w ays sc ien t i f icresearch was ap pl ied to the s tudy of the i r l ives . W hen w e un ders tandAlbe r t E in s t e in ' s comm en t , "The w ho le o f s c i ence i s no th ing more t han a r e f i nemen t o f eve rydayth inking ,"w e a l lhold the potent ia l o r th inkin g c ien t i f ica l ly bou tw h a t w e d o . T h e e m i n e n tphys ic i s tof fe rs som e guidance , "Wh ere the w or ld ceases to be the scene of ou r persona l hopes , an d wishes ,whe re w e f ace i t a s f r ee hum an be ings admi r ing and a sk ing and obse rv ing , t he r e we en t e r t he m a imof Ar t and Sc i ence . "

To r e f i ne my eve ryday t h ink ing abou t pe rsons w i th p ro found mu l t ip l edeve lopmen ta ldisabil i t iesdem ands u nders tanding the naut re of the i r d if fe rences in a n ew w ay, in a sc ien ti fic way. As ananthropologis t, I had to approach the d iscovery of the i r day- to-day l i fe as a sc ien t i s t m im ing m yknow ledge abou t the com plex informa t ion nheren t in the i r hum an systems. I had to f ree mys e l f ofpersona l hopes and w ishes to change the i r l ives and remain ope n to ask ques t ions of w hat I observedthem do ing .

W hen I began to apprec ia te what they d id bey ond the i r mu l t ip ledisabil i t ies , I ca m e to see pat ternsin the ir interactions. I co uld n ot describ e their s imilar i t ies by reco gniz ing 0n ly their differences.I could not exp la in the i r ab i l i ty by th inking in te rms o f the i r d i sab i li ty . The a r t o f the lan guag e ofdescr ip t ion and explana t ion and the r igour and prec is ion of sc ien t if ic th inking revea led s imi la r i t iesin the i r exper ience which I co uld no t sham. I cam e to see the s imi la ri ties and d i f fe rences in person swi th severe and profou nd m ul t ip le deve lop me nta l d i sab i l it i es as sh if ts in the re la tionships am ongform, func t ion , and content .


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Follo win g a brief description of my research and an example, I ~ I1 describe the patterns in therelat ions hips I began to m ake sense of in heir behaviour. U nders tandin gof he shifts in form, function ,and con ten t m ay i l lum ina te he pa tterns in the i r hum an sys tems . Recog ni t ion of pa tterns a l lowed forthe d iscovery of m ean ing and a fu l le r explana t ion of the i r ab i l ity .Population

A com prehens ive universa l def in i t ion of the ab i l i ty of persons w i th profou nd in te l lec tua l andphysic al dis abilities is difficult to a chie vesolely hrough the use of radit ional cl inicaland psychometricmeasures . Th e a rch ive records revea l no s im ple or cons is ten t descr ip t ion of th i s popu la t ion . Acomp l ica ted a r ray o f phys ica l handicaps cons t ra ins the ind iv idu a l ' s ab i l i ty to func t ion in no rma l orexpected fashion. T he pro foun d levels of intel lectual disabil i ty (his torically m easure d by an intel l i -gence quot ien t ow er than 20) imp ai r he senses, d i s rupting he processing o f nform at ionan d affectingcogni t ion . M any ind iv idua ls a re sub jec t to se izures and cent ra l nervous sys tem d is turbances . Th es t ab l e an d uncom pr omis ingna tu r e o f t he i r mu l t i p l e nvo lvemen t sand d isab i l it i es genera l ly necess i -tates ass i s tance in the deve lopm ent of the sk i l l s o f se l f -main tenance o inc lude move me nt , ea t ing ,dress ing , ba th ing , and co mm unica t ion .

Professionals an d caretakers refer to these residents as the "lo we st functio ning on t he g r ounds " ;" th ey ca n ' t do any th ing" ; " t hey ' r e r e a l l y bad o f f ." Thes e de s c r ip t ions do no t p r ec lude t he i r un iquef o rms o f commun ica t ion ,dem ons t ra t ion of awareness and u nders tanding of o thers , com m unica t ionof inten t and purpose, and desire to be long and part icipate in every day l i fe .Setting

Th e w or ld exper ience of the residents i s conf ined to two la rge l iv in g spaces: the ac t iv i ty a rea andthe s leep ing area. Th e room is part it ioned into sections w here residents are posi t ione d on w ater beds,s tretchers, san d bag chairs an d mats d uring free t ime for any ge neral act ivi ty. T he s lee ping area is ama ze of c r ib-s ty lebed s separated b y m etal cabinets with faci li ties for b athin gan d toi let ing. In tersect ingboth room s i s a g lassed- in of fice f rom w hich s ta f f observe he res idents wh o l ive there . A cross the ha l lfrom these l ivin g areas a re classrooms, offices , an d therapy room s for program m ed act ivi ties.

The even t described here takes p lace on the f loor and ma ts in the la rge ac t iv i ty area for the wards .

METHODSM y research began w hen I ob served 64 persons labe l led wi th in te l lec tua ld isab i l i ty and m ul t ip leand severe or profoun d deve lopm enta l d isabi li ti es , l iv ing on an apar tment ward , ov er a f ive-yearperiod (Gleason , 1989) . I observed what ind iv idua ls wi th profo und mul t ip le deve lop me nta ld i s ab il it i es d id on t he i r own be f o r e t he i n t roduc t i on o f l ega l ly m anda t ed educa t i ona l andtherapeutic programs des igned to teach sk i l l s , m odi fy b ehaviours , and lyresent cu l tura l ly appro-priate tasks.

Bein g in the se t t ingbefore the in t roduct ionof indiv idua l iTed educa t iona lp r og r ams a l l owed m e theoppor tuni ty o com pare and cont ras t wha t the res idents were do ing before the advent of the programswi th w hat they were d o ing a f ter the profess iona l s ta f f became invo lved in the i r l ives . A na tura lex pe r imen t evo lved .

The research ro le tha t I assum ed was tha t o f an e thnographer . In cont ras t wi th o ther forms o fqua li tat ive research, I applied a social and cultura l analysis to un derstan d the eve ryda y lives ofpersons wi th profou nd mu l t ip le deve lo pm enta l d i sab i l it i es . As an appl ied an thropologis t, Iemp loyed de s c r ip t i on and exp l ana t ion o m ake s ens e o f wha t I obs e r ved t he r e s iden t s do on t he w a r df rom day- to-day .


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GLF-.ASON 161

Formal ana lys i s and explana t ion of t he da ta were a compar i son of my observa t ions wi th therecord of assessment s f rom ind iv idua l i zed educa t iona l p rograms. I con t ras t ed in te rac t ions o n the i row n wi th the i r part icipat ion in the structured, form al interact ions wi th professiona ls in therapyand lesso ns des igned to teach a ski ll .

By co nt inuous e l abora t ion of t he pat te rns in the res iden t ' s behaviour , I was ab le to deve lop adescr ip t ion tha t revea led the i r messag es in what t hey d id. By f reez ing the account and ana lys ing them ean ing und erlying the resid ent ' s participation, I per ceiv ed intent and purpose in thei r actions. M yexplana t ion en ta i l ed the iden t if i ca t ion of t he mean ing m ade of behaviour , an abs tract ion of t heunder ly ing m essages involv ed in the i r comm unica t ion , and the impl i c i t pa tt erns tha t a f fec t ed thecourse of t he i r in t e rac tion .

Spec i f i ca l ly , I was in t e res t ed in the way s in which persons wi th profound m ul t ip l e deve lopm enta ldis ab l i f ies pa rt icipated wi th one another. I asked the very' basic quest ion: W hat do p ersons w i thprofo und, mu l t iple dev elop me ntal disabi li ties do?I l lu s t ra t io n : P l a y e v e n t b e t w e e n D a n i a l a n d T h o m a s

I discov ered exa m ples of shared, learn ed pat terns of interaction betw een and a mo ng the residents.Th e pa t te rns o f p l ay in even t s becam e a s t ar ti ng p l ace f rom which to descr ibe the soc ia l and cu l tu ra lb o u n d a r ie s o f t h e i r e x p e r i e n ce . T h e p l a y o f t w o b o y s , D a n ia l a n d T h o m a s , c a m e t o sy m b o f i z e w h a tI ob served the o ther res iden ts d o ing . A n ex cerp t o f t he even t p rov ides an i ll us trat ion .

Dania l swings a whi t e -handled F i sher Pr i ce l awn mower .Tho ma s c rawls across the f loor on h i s back inch by inch , a d i s t ance of twenty fee t . Hepos i t i ons h imsel f para l l e l t o Dania l .Th e a t t endant com es in , l ooks a t the boys and says, "W hat a re you f igh t ing for?" Shep i ck s u p T h o m a s a n d m o v e s h i m t o a n o th e r m a t t w e l v e f e e t aw a y . S h e g i v e s T h o m a sa b lue-handled F i sher Pr i ce l awn m ower . W i th the toy , Tho mas c rawls back across thef loor to l i e para l le l t o and beh ind D ania l.Tho ma s h i t s Dania l on the shoulder. Dania l h ides h i s t oy undernea th h im . Thom as h i t sDan ia l on the shoulder aga in . D ania l tu rns ove r to face Thoma s w i th h i s t oy in f ron tof h im. Thom as m oves c loser and grabs a t Da nia l ' s t oy. He m isses . Dania l g rabs a tThomas ' t oy . He misses .Thomas grabs at Danial ' s toy. He gets i t . He pul ls i t over to him. Danial grabs atTh om as ' toy. He gets i t. He roUs ov er wi th the toy (Gleason, 1989: 93-106).

Together , Dania l and Thom as cont inued th is sequen ce of p lay wi th the toy for two and one -ha l fhours in spi te of the constraints imp ose d by thei r mu l t iple disabil it ies , the rules of the staff whichrequ ired them to stay on the mats, and repea ted attempts by staff to separate th e two b ecaus e they wer e" f igh t ing" and no t p lay ing .

Ti m e and sp ace are the defining properties that set the con text of the bo ys ' play. N ot the sett ing,n o t t he i r d isab i l it y , no t t he pa les o f t he ward, no t our l abe l s fo r w hat t hey a re do ing . Thi s p l aysequ enc e highl ights the contradict ions, paradoxes, and gaps betwe en what they are doin g and w ha twe know about what t hey a re do ing . The s ign i f i cance of persons wi th profound mul t ip l edev elop m enta l disabi l i t ies is that wh at s taff understand about the residents in large m easu rede termines the qua l i ty o f t he i r li fe .


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16'2 THE CREATION OF MEANING

The gulf widened when professional staff , who had assessed their abil i ty and behaviours,developed individual izedprograms and de signed a curriculum to teach them to play. Teac hers andtherapists directed lessons to develop so cial ly an d cultural ly acceptable patterns of play beh aviou rsbetw een these twO boy s. The p lay exam ple described is ul t imately r icher than al l the descriptions ofski l l s in the profess ional reports of the ir abi l i ty fo l lowing this event . Fo r exam ple , Th om as ' seducat iona l program ident i f ies sk i l l objec tives for the su bsequen t two years that a re far m oreci rcumscr ibed than the ski l l s I observed in the p lay even t in M arch 1978. Th e fo l lowing excerpts aref rom the a nnu al s ta tement of program objec tives on h is individual educ ational program.

Progra m Objec tives (June 1978-June 1979)Fin e Motor : H e w i l l reach for an objec t whi le prone over a wed ge dal ly for 30 minutes of a day.Respo nse to s t imu l i of ac t iv i ty through change in fac ia l expression, body mo vem ents andvocalizations.Program Ob jectives (1979-1980)Fin e Motor : T o l ie prone o n scooter board or supine in mat. W il l p lace 2 inch pegs in to peg board4 ou t of 5 tr ials in a o ne-to -one situation.Th e elem ents o f play describe d in objectives for programs such as social izat ion, recreation, a nd

fine mo tor a bil i ty fai l to incorporate the intricate d etai l of what each boy had mastered already.Repor ts throughou t 1979 docum ent tha t Thomas needs phys ica l assistance to pass an objec t and

m ain t a in his weigh t on h is e lbows a nd his head in a su :aight pos i t ion for one a nd o ne-h al fminutes . Inthe p lay event , he m ainta inshim sel f for ove r an hou r in p lay w i thout phys ica l assistance. In the eve ntdescr ibed here he t ravels indepen dent ly a d is tance of over 30 or m ore fee t over the f loor. Progressnotes fo r June 1978 state tha t he can mob'f lizeh im se l f a d i st ance o f on ly i ve fee t ove r a 20 o r 30 m inu telesson period.

Progress notes refer to the fact that Tho ma s plays games with staff, b ut there is no recordedobservat ion of h is p lay w i th o ther res idents . As la te as N ovem ber 1978 (some n ine mon ths fo l lowingthe curren t eve n0, a recrea t ion specia li st s ta tes tha t Tho mas does not engage in a ny rea l in terac t ionsw ith others. H enc e staff co ntin ue o posit ion him for prearranged activi ties, sele ct the toys for play,determ ine the ind ividuals wi th who m he i s to in terac t, d i rec t the p lay ac tiv ity , a nd evaluate h isperform ance in the conte xt of prescribed activi ties (Gleason, 1990a).

Th e specia l i s t n each ins tance conducts the evaluat ion n the context of prescribed performanceon a prearrange d activi ty. T he ev aluation criteria used b y the teachers are the nu m be rof t r ia l s and thepercentage of correct responses in playin g with the peer; these criteria do n ot clarify how to arrang ethe ac t iv i ty in order fo rTh om as to par ticipa te .

The con t ras t be tw een what the res idents were do ing and what we w ere t ry ing to ge t them to doheighten ed my aw areness o f the contradict ions in ou r understan ding of their experience, thed i sc on ~u i ty i n ou r cu r r icu lum and m e thods fo r unde r s tand ingand in terpre ting hei r abi l i ty , and thechal lenges in apprecia t ing the o ther wa ys of l i fe they demonst ra te .


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GLEA$ON 163

T h e o r e t i c a l f r a m e w o r k

A theory o f explana t ion of w h a t t hese persons do ( those wi th deve lopmen ta l d i s ab il it ies i n genera l ,and thos e wi th profo und m ul t iple dev elopm ental disabil it ies in particular) invo lves deciphe ringpat terns ex presse d through thei r hum an systems. T hes e are:

(1) patterns of interferenc e,(2) patterns o f participation, an d(3) patterns in amb igtfity.Ea ch pattern can b e exp lained in terms of shi ft s in the relat ionships am ong fo rm, funct ion , and

content. Th e conce pts wi l l be exp lained f i rs t in terms of thei r appfication to persons w i th sev ere andprofo und mu l t iple dev elop me ntal disabil it ies .

Th e d i f fe rences a re obvious . The f i rs t is d i f fe rence i n fo rr~ M ult iple disabi li ties reve al them selve sas d i f fe rences in ana tomica l s tructures o f t he hum an b ody .

Fo r exam ple, the exce rpt used to il lustrate points in this paper i s a play ev en t betw een tw o residentsDa nial and Th om as. Th e physical characterist ics of both are s igni ficant disturbances to the exp ecte dh u m a n f o r m .

Dania l i s c l ass if i ed as hav ing a p rofou nd l eve l o f in t e ll ec tua ld i sab i l it y nd ica t ed by an in t e l l i gencequot i en t be low 20 . In 1969, Dania l was admi t t ed to the ins ti tu tion a t the ag e of f ive ; a t t he t ime o f t hes tudy , he w as 16 years o ld . C l in i ca l mani fes t a tions of h i s phys ica l condi t ion inc lude hydro cephaly ,b lindness , ep i l epsy , quadr ip l eg ia , A mo ld-Chiar i mal format ion , and psycho motor d i sab i l i ti es .Thom as w as adm i t ted to the ins ti tu tion in 1962 when he was 4 years o ld . He was 22 years o ld a tthe t ime o f t he s tudy . Hi s l ev e l o f d i sab i l it y i s recorded as severe . Thom as m ani fes t s c l in i ca lcharacteris tics of organic brain da m age and is cons idered bl ind, spastic , and tet rapleg ic.

The se cond i s d i ffe rence o f u n c t i o n . Differences in hum an form cha l l enge our recogni t ion of t hewa ys the individu al functions. Dir ect finks are di ff icul t to make . Disabil it ies affec t the abi l i ty of theperson to act in the natural, e xpe cted, or the required man ner. In this interaction, T ho m as 's re act ionto the therap i s t 's p resence i s eva lua ted in i so la tion , d ivorced f rom the meaning of wh at he i s d o ingwh en he repea ted ly I"o ll s way . Th e therap is t f i gures ou t how h i s a rms and l egs mo ve no t by observ ingh i s m o v e m e n t b u t b y h o w sh e i s a b l e t o p l a c e t h e m i n o rd e r fo r h i m t o ro ll . T o d i s c o v e r h i smano euvrab i l it y , the therap is t does no t eva lua te Thoma s in the contex t o f ro l l i ng for h i s ow n purposes .She evaluates his abi l i ty to rol l by assessing funct ional at t r ibutes of his physical condi t ion. Inanother contex t o f t ry ing to recw~te the ro l l Tho mas has ear l i e r used to ge t aw ay f rom the therap i s t,she places his hands and legs into posi t ion to rol l in the man ner she prescribes. Fo r her, the prob lemin Th om as ' s i nab i li t y to ro l l is l ack o f musc le tone ra ther than the na ture o f her i n t e rac t ion andi n v o l v e m e n t . T h o m a s ro i l s i n p l a y b u t d o e s n o t c o o p e ra t e w i t h h e r fo r h i s o w n r e a so n s .No netheless, his abi l i ty to rol l i s determ ined an d prescribed by the therapist. Th e therapy pro mo tesh i s ab i l it y to ro l l i n the prescr ibed manner . Th o m ~ ' per forman ce in therapy d oes no t cor respondto h i s dem onst ra t ed ab i l i ty ou t s ide of t herapy (G leason , 1990b).

Thus , t he th i rd d i f fe rence may be that o f content . M eaning in the res iden t s ' act ions, o r t he conten tof thei r me ssage, ca n easi ly go und etected and unappreciated for wha t it i s to them . Interpret ingbehaviours o f t he res iden t s ra ther t han in t e rms of w hat t he person i s do ing perpe tua tes a r i f t be tw eenwh at the residents do an d teach ers expectat ions. Re cord ing abi l ity in terms of objec t ives w i thcr i te r i a fo r per forma nce in the contex t o f t herapy revea l s t i tt le o f the w ays in w hich Thom as goes


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about w hat he has to do . The focus becom es the handicap and the remedia t ion of def i c i t a reas ra therthan w hat the individu al i s doing . This orientat ion focus es on l imi tat ions of the individua l ratherthan the ways in which Thomas has l earned to adapt , i n t e rac t , and communica te wi th in theconst ra in ts o f h i s d isabi li ty . The res iden t ' s per formance i s j udg ed by the d i cho tomo us c r i t e r i a"do " or "not do" c r i t e r ia no t su it ed to the l eve l s o f t he ind iv idu a l ' s phys ica l com plexi t i es orrepresenta t ive of res ident pat te rns in the contex t o f da i ly l ife . The c onten t o f t he ind iv idua l i zededuca t iona l p l an does no t ma tch what t he person does . The m ismatch in eva lua t ion is perpe tua tedin the program.

The pa tt erns wh ich mu st be dec iphered a re descr ibed be low. F i rs t , pat tern s o f interference aredi scove red in the way s var i a t ions in form d i s turb funct ion . Th e e f fec t o f t he d i sab i l it y on the personi s r e co g n i zed b y t h e d i ff e r en ces i n t h e w ay s t h ey t o o k an d act. T h e i r w ay s o f d o i n g a r e d i f f e r en t an dchal l eng e our percept ion and recogni t ion of human form and func t ion .

Pa thology af fec t s the ba lance , coherence , and sym met ry in the i r hum an sys t ems and d ramat i zesthe person ' s express ions ac t ions, and m ovem ent s . I t a l te rs t he pa thways ava i l ab le to the ind iv idua l t ocon vey conten t, t hus in t e rfe r ing wi th the usua l c lues ava i l ab le for dec ipher ing human express ion andmeaning . Express ions a re no t read i ly famil ia r . Becau se pa tt erns of i n t e rfe rence bec om e assoc ia t edwi th what t he person cannot do , we run the r i sk of re l ega t ing conten t t o the fac t s assoc ia t ed wi th thedisturbance to form and function. In this way, wh at the person does i s interpreted in terms o f thei rd i sab i l i t y . Genera l i za t ions about t he profound and mul t ip l e l eve l o f t he d i sab i l i t y def ine s t a f fexpec ta t ions o f t he i r ab il it y .

Ho we ver , the disabi l i ty and the associated qual i t ies and characterist ics are no t the de f i n in g co n cep tof he person , nor a un i fy ing fea ture of our humanity. Kn ow ing the mani fes t a t ions of t he condi t ion se t sthe s t age for unders t anding another se t o f pa tt erns.

Pa tterns ofparticipation em erge when the re la t ionsh ip be tween form and func t ion i s recogn izableand contr ibu tes to unders tanding . W hat the person does m atches w hat we th ink he should be do ing .W e r eco g n i ze ex p re ss i o n s an d b eh av io u r s a s g e s tu re s w h i ch can co n v e y m ean i n g . S y m m et ry i n fo rmand func t ion a l lows for t he d i scovery of conten t beyond the d isabi li ty . Spec i f i c behavioura l reper to ireso f co m m u n i ca t io n d ev e l o p . We m ak e s en se o f w h a t t h e p e rso n i s d o i n g b ecau se t h e i r h u m an sy s tem sfunct ion in a way tha t conv eys meaning . Con ten t becom es the mean ing in the i r ac tions , express ions ,m o v em en t s . C o n t en t b eco m es w h a t t h e p e r so n can do .

In an in t e rac tion , t he d i rec t re la tionship be twee n form and fu nc t ion revea l s o rder , which pe rm i t sinterpretat ion. In turn, analysis o f the orde r m ay rev eal the me anin g im pl ici t in thei r exp l ici t acts . Th eimpl i c i t me aning found in the shared , l earned pa tt erns be twe en and am ong the residents def ines the i rpatterns of participation. Da nial and Th om as's sha red learned patterns of play, wh en vie w ed asreciproca l interaction, ma ke se nse to us as play.

Mak ing sense of what i s imp l i c it n what t hey a re do ing i s an avenue fo rd i scov er ing the capabi l i ti eszu-~d potential o f the person. Th us, patterns o f participation rep res en t a pictur e of the integ rated a ndcorn b ined s trengths of t he person . Th ey revea l t he to ta l it y of t he i r ab i li t y across the dom ains of h uma nfunct ion ing ava i l ab le to them. For p ersons w i th profound mu l t ip le deve lopm enta l d isab i l it i es, thesepa tt erns cons t i tu t e a un i fy ing fea ture in ou r shared hum ani ty because they a re a vehic l e by w hichwe can kno w them, underst and the course of t he i r deve lopm ent , and par t i c ipa te wi th them.

Th ere are clues for discerning patterns of participation. Th ey are context , expe rienc e, purp ose,and meaning . Each i s descr ibed here br ie f ly .


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GLEASON 165

Th e f i r s t is context. Primar i ly , what persons w i th severe or p rofound mul t ip l e deve lop men ta ldisabi l i t ies learn i s context . Conte xt is used he re to me an m ore than jus t the si tuation orc i rcumstances wi th in an env i ronment . Con tex t i s t he ongoing se t o f re la tionships in an in t e rac t ionw h i ch m ak es u p an ev en t . L ea rn i n g co n t ex t in v o l v e s m ak i n g s en se o f t h e s e t o f ex p li c it an d i m p l i c i tcond i t ions and relat ions wh ich influenc e the course of the interact ion. Learning ski l l s or abi l i ties ,beha viours, or tasks i s secondary. Da nial and Tho m as' sk i l ls are incorporated into thei r pertb rm -ance of p lay . Ind iv idua l sk i ll s o r behaviours t aught i n i so la t ion may f ragm ent the exper i ence .Behav iours t aught i n m echanica l fash ion ma y not be incorporat ed in to ex i s t ing reperto i res .Ar t i f i c i a l ly der ived t asks m ay be u nre l a t ed to the ir own performance.

Th ey l earn in the exper i enc e of do ing . Dania l and Thom as l earned to p l ay toge ther. Th ey amshow ing us wha t we ne ed to know to provide exper i ences tha t wi ll be meaningfu l to them. W e h aveto arrange the contex t that al lows them to play.

Pat terns of participation am understood wh en the residen ts ' actions match our expectat ions fo r thes i tua t ion , wh en w hat t hey do seem s to f i t t he contex t . Dania l and Tho ma s ' p l ay i s understood as p l aywh en we see the whole . The behav iours have a re fe rence poin t wi th in the c ircumstances of t hesituation. In con text , patterns of interferen ce can be di fferentiated becaus e they interrupt the si tuat ionand th e indiv idu al ' s part icipat ion. Such pat terns do n ot fi t.

A se cond c lue i s experience. The exper i enc e of persons wi th profound mu l t ip l e deve lopm enta ld i sab i li t ies i s def ined by the i r ways of do ing . Thei r exper i ence deve lops f rom the ways they cont inueto in i t ia t e and m ain ta in in t e rac t ion a mo ng themselves and wi th s t af f.

Th ei r ex per ienc e i s no t defin ed solely in terms o f pathology. Pat terns ofinter~?rence do n ot createexper i en ce , t hey d i s rupt i t. The ch a l l enge to underst and the com plex processes invo lved li es i n ourways of ma king sense of t he na ture of t he ir exper ience .

In the rush to ca t egor i ze the i r exper i ence , i t i s o f ten eas i e r to comp are what t hey am doing to whatwe do , judg ing wh at we recogn ize in the i r act ions by the m atch to the si tua tion . To accept t he c r it e r i afor exper ienc e as w hat the person doe s requires understanding the intent ion and signi fican ce for theperson in the i r own t e rms. Exp er i ence i s no t j us t do ing , i t involves knowledge .

To prov ide cont inu i ty in the dev e lopm ent of t he i r exper i ence requires tha t we ident i fy the na t iveabi l i ty dem ons t rated in the i r ways o f participating and do ing things wi th others. I am n ot referring hereto the pract ice o f speci f ic ski l l s in lessons o r behaviou rs in rout ines of dai ly l ife . The succ ess o f ourinv olv em en t i s di rect ly related to ho w w e bui ld on the pat terns of interaction that define the basis ofthe ind iv idua l ' s re l a tionsh ip to and assoc ia tion w i th o thers.

Th e third clue i spurp ose . Sh ared learned patterns of behav iour are goal -di rected. Th e purposefulends tow ard w hich thei r actions are di rected bec om e a clue to the perso n's needs, wants and desi res.H ow the individual part icipates in an interact ion relates to the com parat ive st rength o f the patterns ofin t e r fe rence and part ic ipa tion . W hat em erges i s t he un ique and c rea t ive ways the person ac t s w i th inthe com pet in g forces of these pat terns d emo nst rat ing wi l l . Th e resourcefulness in the play of Dan ialand Th om as l i es i n the way in wh ich they m obi l i ze the i r resources and ab i l i ty to p l ay in the face of

the misinterpretation by staff, the rules o f the apartment, and the constraints their disa bil i tyi m p o ses .To d i scov er purpose requi res that we respec t the person ' s spat ia l and t emp ora l contex t. W hen we

interject our selve s prem aturely into a situat ion through p rogram s or intervent ions, w e m ayove rride thei r purposes. Un wit t ingly, we ca n su bver t what i s most bene ficial to -know, that i s, wh atthey want .


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Th is may ch ange o ur intervention. Bu t thei r purposes are not a cha l leng e to our con~o l . Ratherthey a re a c lue to the ways w e can ass i s t them to ach ieve the i r ends. T o k now the ir purposes a l lowsus the opportuni ty to create the curriculum together. I t can st ructure our in volv em ent to supportand a id thei r intent. T hei r purpose can open the opportuni ty to provid e educa t ion and therap y inthe contex t o f w hat t hey a re a l ready doing; t ha t is , by expanding the i r expe r i ence in way s tha t a remeaningfu l t o them.

Th e four th c lue is meaning. His tor ica l ly , we h ave passed ove r the d i scov ery of meaning e xcep tas interest ing anecdo tal detai l. H ow eve r, order and repet i t ion in shared, learn ed patterns prov ide theopp om mi ty to def ine the m eaning of event s i n a p erson ' s l i fe . At tr ibu tes as soc ia ted wi th the i r mul t ip l ed i sab i li t ies do n ot def ine the person or ass ign meaning . To d i sc ove r mea ning in the i r t e rms a t t heimpl i c i t l eve l ks to in t e rpre t what t hey do wi th o thers based on the i r act ions. The ab i l it y demonst ra t edin the combined pa tt erns in the p l ay of Dan ia l and Th oma s i s g rea t e r than any recorded s t a tement o fthei r abi l i ty . Th e w hole ev en t i s greater than any ind ividual skil l.

A t fi rs t, t he mean ing of an event , se t o f behaviours , o r accumula ted exper i ences m ay seem remote .In a t t empt ing to der ive meaning f rom an event we must accept t he po ten t i a l fo r a l t e rna t iveca t eg o ri za ti o n s o f t h e i r ex p e r ien ce . T h e i r ex p e r ien ce an d m ean i n g ch a l l en g e o u r o w n w ay o fthinking, feel ing, and act ing. T o understand wh at is com m unica ted by the individuaI requires that w ein te rpre t t he meaning in the i r exper i ences before we seek to change , modi fy , o r a l t e r ex i s t ingb eh av i o u rs b y t e ach in g m a i n s t ream w ay s o f a c t in g an d b eh av i n g . T h e b eh av i o u r s w e seek t o ch an g em ay b e t h e ir f o rm o f ex p re ss i o n . T h e i r fo rm o f co m m u n i ca t io n m ay b e l o s t w i t h o u r i n te rv en ti o n . I fDan ia l and T ho ma s ' ac t ions w ere in te rpret ed as p l ay ins tead of f igh t ing they would not have beensep a ra t ed an d w e w o u l d n o t h av e i n t e rf e r ed w it h w h a t t h ey a r e d o i n g . We n eed n o t m ak e i t h a rd e rfor t hem to do wha t t hey can do . H ow we def ine what t hey a re do ing i s the c r i ti ca l var i ab le in ou runders t anding of t hem.

Th e thi rd s et of pat terns, patterns in ambiguity , i s define d by the proce ss of understanding therelat ionship betw een pat terns of interference and participation, ff w e can think a bou t patterns ofinterferen ce and patterns of part icipat ion as two ci rcles that intersect, then pat terns in a mb igui tyrepresent t he a rea of ove r l ap be tween the two. Confronted wi th the cha l l enge of unders tandingdifferen ces in persons wi th p rofoun d m ul t iple dev elop me ntal disabifit ies , i t i s easy to see a l l that theperson i s do ing as am biguous .

On the o ther hand, the amb igui ty creates the opportunity for disco verin g l .inks am ong form an dfunct ion and c onten t i n wh at t he person i s do ing . At the same t ime tha t t he ind iv idua l s t r ives forexp ression and com mu nicat ion , patholog ical condi t ions constrain participation. Th e process ofre f in ing our th ink ing involve s us in s i f t ing and soI~ng through behaviours t ry ing to make sense o fthem. T o m ake sense , t he observer learns to admi re the form in the i r ana tomica l s tructures and hum ansys tems. I had to see func t ion as ho w the person accom pl i shed what he or she wanted to do . To fur therques t ion the re l a t ionsh ip be tw een form and func t ion i s t o d i scov er conten t. Th e pa t te rns in amb igui tyrepresent t he s t a r t ing p l ace for c l a r i f ica t ion and fur ther d iscovery o f t he in t en t and purpo se o f t heperson ' s ac t ion . At f i r s t every th ing tha t Dania l and Thomas d id was ambiguous ; when mycategor i es for i n te rpre t ing w hat t hey w ere do ing w ere redefmed , pa tt erns, rather t han f ragmen tedand i so l a ted behaviours , began to emerge .C o n c l u s i o n

W hen I have d i f f i cu l ty in unders tanding what persons wi th profound m ul t ip l e deve lopm enta ldisabi l i t ies are do ing I hav e often ove rlook ed the relat ionships am ong form , function, and con tent


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GLEASON 167

and fa i led to use the appropr ia te c lues and co mprehe nd the patterns. Th e chal lenge i s to ma ke sen seof w hat the ind ividual does , teas ing out pa t terns of in ter ference and pat terns of par t ic ipa t ion fromthe ambigui ty .

W hen w e r ega rd t each ing and l ea rn ingas a m utua l act of interpretat ion, w e ha ve a differe nt start ingplace , a d i f ferent approach to m aking sense , based o n the com mo n ground in ou r humani ty . Th es igni f icantdifferences shif t from the discov ery of a pe rso n's pathology to und erstan ding o u r w a y s o finterpretation.

W hat i s s igni f icantabout the p lay of Dania l and Thom as i s tha t i t shat tered i l lus ions ha t we haveto teach the m to play. Together, they learn ed one anoth er ' s be hav ioural repertoires, they d ifferenti-a ted pat terns , an d they developed shared mean ings . In wha t they do, they show us w hat we need todo.

W ith persons w i th profound m ul t ip le developm enta l d isabi l it ies par t ic ipa ting in our h om es ,schools , c omm uni t ies , and w ork p laces , w e a l l w i l l be asked to ref ine our everyday th ink ingscient i fica l ly o d iscover the com mo n quali ties in ou r l ife together. W hen we discover these qual i tieswe wi l l be i n a pos i ti on to q ua l ify and quan t i fy wha t w as p rev ious ly unkn own .

REFERENCESBerkson, G. & Land esma n-Dw yer S . (1977) . Behav ioura l research on severe and profound Menta l

Retardation. Am erican Journal of Men tal Deficiency, 81, 428-454.Br un ne r J . (1990). Acts o f meaning. Cam bridge , Ma: Harvard Un ivers i ty Press.De ising, P. (197 t ). Patterns o f discovery in the social scqences.New York: Ald ine Atherton.Er ickson, F . (1958). The nature of c l in ica l evidence . In Evidence and Inference. D. L erne r (Ed.) ,

G len co e, 111:Free Press.G leaso n, J . J . (1989). Special education in con text: An ethnographic study o f persons with

develo pm ental disabilities. Cam bridge , England: Cam bridge U nivers i ty Press .Gleason, J . J . (1990a) . M eaning o f p lay: In terpre ting patterns in beh aviour of persons w i th severe

deve lopm en ta ldisabilities.Anthropology an d E ducation Q uarterly, 21, 59-77.Gleason, J . J. (1990b). U nder ly ing mean ing in the behaviou r of persons wi th severe and pro found

m e n t a lretardation and mu lt iplehandicaps: Impl ica t ions or c l in ica l in tervent ion .MotorDevelop-merit, Adapted Physical Activity an d Men tal Retardation. A. Verm eer (Ed.) , Basel : Karger .M ann , L. & Sabatino, D . (1973). The first review of Special Education. 2 vols. Philadelphia:Bu t tonwood Fa rm s .

Sackett, G. (1978a). Data collection and analysis methods, VoL 11o f Observing behaviour, 2 vols .Baltimore: Un ivers i ty Park Press.

Sackett, G. (1978b). Theory and app lications in m ental retardation, Vol. I o f Observing behaviour,2 vols . Bal t imore: Un ivers i tyPark Press.

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