Social factors in mental retardation

SOCIAL

FACTORS

IN MENTAL

RETARDATION

LOUIS ROWITZ Illinois State Pediatric

Institute.

Chicago.

Illinois.

U.S.A.

Abstract-Studies into the social factors related to mental retardation seem to grow out of the epidemiological study of the problem. Four research perspectives are reviewed. The East Coast Prevalence Studies have been epidemiological with a concern for the amount of retardation in a given area. The Social Epidemiology Perspective of Western Europe has also been epidemiological but with a strong concern for program planning and evaluation. The SociallBehavioral Research trend has been concerned with social factors in labeling and the life style of adult retardates, The Crisis Research trend has been concerned with how families cope with their retarded child. The author then presents a synthesis of the findings based on the premise that the family should be viewed as the central core of an understanding of the social elements in mental retardation.

Historically. research in mental retardation centered around studies of the prevalence of the disorder. This research seems to have accompanied the growth of special educational services and residential facilities in the late 19th century [l]. This was also the period when social Darwinism was extremely popular. Between 1906 and 1925. a number of studies were undertaken with the primary aim of determining the prevalence of mental retardation in a specified geographic area [2]. The estimates ran between 3.4 and 7.4 per 1000 population. The methodological techniques of these early studies were often weak and it is hard to determine the reliability and validity of these studies. Moreover. these studies were not concerned with the social factors involved in mental retardation. It was not until later in the 20th century that sociologists took an interest in mental retardation as a problem to be studied. One major difficulty for the social scientist reviewing the literature of the last half century is trying to tie together the many research threads and look for some common denominator in the various approaches. It is the purpose of the present paper to review the major social research trends in mental retardation and propose a conceptual framework for viewing these studies from the perspective of the early 1970’s. This new perspective may then serve as a gutdeline for future social research in mental retardation. COMMON

DENOMIKATOR

In retrospect. it appears that social research in mental retardation often builds upon an epidemiological frame. Much of the research is exploratory in a global sense and is concerned with the characteristics of those people who are defined as mentally retarded. After this exploratory phase. a number of offshoots occur. Several of these offshoots will be discussed in the next sections. Much of the research can be traced back to the work of Dr. E. 0. Lewis in the 1920’s [3]. Dr. Lewis was 405

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commissioned by the Mental Deficiency Committee of Great Britain to undertake a study of six representative areas in England and Wales, each with approx. 100,000 population. Only those children in high risk segments of the population were tested. The head teacher at each school surveyed was asked to list the 15 per cent of students who were considered the most backward. This selected group was administered group intelligence tests and the children who performed poorly were examined individually by Lewis. Lewis also tried to locate children who were not presently in school because of age or mental grade. He also attempted to track down adults with mental retardation problems and he had difficulties in locating them. Thus the adult information in the study was incomplete. O’Connor and Tizard [2] summarize Lewis’s study by pointing out the major findings. According to Lewis, a little less than 1 per cent of the population could be classified as mentally retarded. Incidence was significantly higher in rural than in urban areas. Of every 100 mentally retarded people, 75 were feebleminded, 20 imbeciles and only 5 of idiot grade. The prevalence of mental deficiency varied greatly by age. The incidence of diagnosed subnormality was highest in the school age years and much lower in the preschool and adult periods. One major sociological finding of Lewis’ related to the rural retarded. He argued that the retarded rural individual is a failure in that he is unable to cope with the demands of a rural setting where initiative and independence are important traits. Mechanization of agriculture has also made it difficult for the rural retardate to perform tasks satisfactorily. REVIEW OF LITERATURE

Lewis set the scene for much research in mental retardation both in the United States and Europe. This paper will review the various studies which show a concern for social factors in mental retardation. It will appear in the following discussion that the various

406

LOL IS RON ITZ

research themes are rather cle~rcut Thlb 13 not entireI\ true ‘-although It 1s possible to bee d number of studies grouped together becJuse ot d common research theme the btudles rnd\ be quote Independent Also there are a number ot btudles N hlch do not fit Into Jn\ particular npproxh but rather cross o\er bc\srdl perspectl\cs This paper ii111 not discuss these studies In searchmg ior common themes It IS hoped that It \\III be possible to see some relatIonshIp bet\ieen the LdrIous research studleh For the purpose of this present re\leb of soclo-behakloral research m mental retardation ober the past felt decades several district lmes of research endeavor ha\e occurred Research on the East Coast ol the Unltrd States has been prlmarllq epldemlologlcal m approach This perspective has been most apparent m the work of Jastak Lemkau and their associates The becond research stram IS lound m Western Europe -prlmartl) England This research IS an offshoot of the National Health Service The research IS epldemlologlcal m nature covering physIcal. btologlcal and mental dtsorders It IS strongly tinged bq a concern ior program plannmg and evaluatton In mental retarddtlon this approach IS represented bq Tlzard. Susser dnd Stem Susser and Stem have brought their medical epIdemIologIcal approach to their work at the Columbia Um\ersq School of Pubhc Health The third approach IS represented bj the soclo-behabloral orlentatlon of researchers at Pacific State Hospital m Callforma This school of research IS quite s\tensl\e m that man! research studies have been published b\ man\ m\estlgators m the last decade Fmdlli there dppexs to be Jnother approach u hlch w III be called crIbIs research It IS represented bj the soc~nl researcher N ho uses mental retardation ds one problem to be in\ehtlgated Hlthm the frameuork a larger SOCIO~O~Ical perspective For example Fdrber loohed at mental rstardatron as d crisis SlfUdtlOn wlthm the family This Interest \C,.ISprlrn~rll~ In the farnIl\ dnd ho\{ the tarnIl\ copes with crlsls Thebe studies \xere published rn the rxl\ II)hO’s

of

A

EGT COAST PRE\ 4LENCE STL’DIES

The studies of the characterlstlcs of the retdrded and their prevalence m a specified geographic area have been the general framework of a number of studies on the east coast ot the Umted States since the 1930’s The first two btudles to be discussed as representatrle ol thlb ‘Ipproxh developed Independenti! of d lormrd.tble .imount of research ol d social epIdemIologIcal

nature In rhe msnt‘~l Illns~~ are,1 N IIICII stems irom rhs iiork 01 Fxl, and Dunham on the dlstrlbutlon 01 IIISIItal disorders In Ch~cqo [-I] Fxlb ,lnd Dunh.lm * \korh \\a> built on a WYXI ecolog\ rebexch model N hlch had Jn Important trJdltlon .tt the C’nlisr,lt\ 01 ChIcago bt,xtlng \\lth the work Jnd rhsorle> 01 the boclologlst Robert Pxk[5] * Durmg the 1930s LsmhJu Tletzs dnd Cooper [‘IO] IntensIveI\ btudled d smdll hsJlth dlbtrlct (one quare rnllej In Baltlmorc The district 15 scolog~c~ll~ composed ol mdn\ different SOCIJI dnd economic groups The hedlth drbtrlct Included John Hoph1n3 Hospital and hledsal School Jnd School 01 H\glrnrl and Public Health dnd hlount SlnJl Hospltdl T\\o mental hjglene prevalence studlcb \\ere conducted In 1933 dnd 1336 Mcntdl retardation \S~S onI\ one Ament ot the stud\ Cases \\crrc Identified through toc~al qenc\ contdcts SOCldl dgencles cober the gdmut ol hobpltal> chmcs police. schools waltmg list etc Fort)-three agencl sources \\ere used Thus It an mdl\rdual had no contact mlth an agencb he Bould not be Included rn the prevalence rate The authors lound that 21 per cent ot their total number of actl\e cases could be classllied as mentall\ detictent [9] In slIghtI) o\er half ol those Idbeled as mentall!, deficient mental retardation was the prlmarb classification In the remamder menu1 deticlsnc\ \\a> secondaq to dnother mental health problem Mental deliclenc~ L\A lound more ottcn Jmong children thJn among adults because there were dlrticultle> m the crlterra of dlagnosrs for mental deticlcnc\ m the lee w\ere types FmAl\ the authors lound A higher prs\alence o1 mental deticrsnc\ In black children than II? white children The stud! rebults dre s\tremel\ general The d~szusblon ot mental deticlenq IS xcondarb to the author> Interest in other boclal problems There 1s tin& no Jttempt to see the results of this stud\ In relatlonshlp to other research findings Despite Its llmltatlons these ,tudles should be i leaed as one 01 the pioneer studies ol pre\&nce of mental retardation It protided borne baselmes for Iuture research dnd Intiuenscd other prevalence srudlcs The authors b\ere also responslbls lor trammg man, of the people 1~ho uould be conductmg thlb research The other stud\ \rhlch represents this prevalence stud> approach 13 the Delauare prolsct reported b\ Jastdk MdcPhee and Whlteman [I I] In contrast to the Lsmhau btud\ rebsarch btxtcd lrom a different premise The researcher5 argue that retxdntlon 13 J somple\ bet ol beha\lor> In IQ meabure 13 not sufliclent to >ho\\ retardation The\ define retarddtlon in term, 01 two pqchometrlc crlterlJ Jnd Tao IIfs hIstorI criteria In order lor an mdl\ldual to be Iabclsd retarded he must fall belo\{ .t cert&~m clctined IrisI (belo& 25 9 and 2 per cent) on ,111lour crlterld The research dsslgn Included &I houszhold >urLe\ of the entire state ol Delaaare An mltrdl sxsenmg mteri lets ~~scomplsted on alI member\ ot s&ish household

Included m the sample 4n Intensive follou-up has conducted for the fdrntlleb of those labeled retarded according to the four crnerla dlscussed above A subsample or the non-retarded famlhes Here 4~0 remrer\ IS\&ed Som of the findlngs are ds tollo\\s In r\er\ IWXJ Idrnllle> In Dela\ membsr bztueen the ages of l&63 \r u ho IS retarded at the 25 per cent lebel (lowest 25 per cent on each of the four crnerlon measures) 47 I TamIlies hale at lcast one mdnldual retarded dt the 9 per cent level and 9 6 ramllles hd\e at least one mdlvrdual retarded at the 2 per cent Ie\cl The Incidence of retarded mdn lduals In a farnIl\ Increases 2s the degree OfretardatIon approaches the 25 per cent level No SIPnlficant dlferences m retardation were lound for sex relglon and rural urban residence Mental retardation 13slgnficdntl! greater among blachs than ahltes at the 25 per cent and 9 per cent level The differences still c 1st but not ds strongI\ at the 2 per cent level Higher levels or retardation are round In poorer economic areas Unemployed and part-time workers shot\ a conslstentl! high concentration of retarded mdlvlduals at all three levels This stud\ has been the most comprehenslve stud\ of the prevalence of mental deficlenci Its major contrlbution 1s an attempt to ObJeCtIf\ the criteria for determmmp If mental retarddtlon occurs From a sociologycal perspectrve this stud\ ha> several IImItatIons In usmp d completeI\ obJectl\e crnerla of determmmg retardation there has been no attempt to see lr difference> m social adJustmen occur betueen those retardates \\ho hd\s been otIic~~ll\ labeled retarded b! >ome communn\ resource and those retardates u ho hJ\e not been ofhcldll\ labeled retarded Moreover the tendcnci to stud\ the dge group3 between 1&6_lr removed the Important retarded ape group under IO \r 4 number 01 other studlch ha\e also been done I\ hlch tit Into the epldemloloplcal frame discussed above Rub\ Jo Rec\eb Kenned\ [I?] did a stud! of the so4 adlustment ot morons In a Connecticut clt! She found thdr the parental bmlhes of the retarded hdd a large prevalence of dl\orce and desertion The Idrnllle~ tended to be less \iell adJusted more problemJtlcdl hdd more mental disturbance and loner socioeconomic btdtus than nonmoron families Thsrc \\rls dlso d grsdter frequenci o~comm~tment~ 0r farnIl> members to state mental Instltutlons The Bmllle3 OI the rstdrded hdd greater contxI: \\lth social \\orlr clgcncley thJn non-rst‘lrded fdrnlllss kenned! also lound thnr members ot the retardate3 parsntdl t~mllles .\I>0 tended 10 Jppedr more frequentI\ m court records 111,111 member> 01 non-rstxdJte tamlllc~ 4 pre\&ncz stud\ 11~~ done In Ononddgd Counrb III 135: [II] In [he wr\e\ all chlldrcn under Ih\r \\srs 10 bs rsporrcd \\ho \\ere hno\\n b\ agencies to be mentdll\ rer‘irdsd or 3u3pected 01 being retarded For rhs age group> >tudled Ibirth through dgs ll\rl the lot.11 number 01 chIldlen relsrred b\ all ~~~SIKIS\

HIS 35 per csnt of the estlmdted populdtlon of the same ages The percentdge Or mdle retarddtes wds related to IQ level The loner the IQ the greater the preponderance of males Saenger [I-l] did d stud\ of fdctor3 mtluencmg mstltutionalizatIon of the retdrdate In Ne\t \r ark Clt\ He round thdt mstnutiondlizdtion \+ds hiphI\ related lo the se\eriI\ of retarddllon Secondar! hdndicdps do not appear to affect commitment except Hhsn the handicap IS severe A mdlorlt\ of the high-grade retarded children come lrom bldcb and Puerto Rican famllres lndlvlduals \\ Ith an IQ o\er 50 tend to be Instltutlonallzed because or behdbior problems outside the home lnstltutlonallzed retdrddtes tend to come from broken homes lnstltutlonalued cases tend to come horn IOI~ socioeconomic fdmllles 4n attempt to integrate the research trddition or the East Coast Prevalence Studies #ds done hi Lebmson In Mame [I_‘] She began her stud] b\ a re\ lew or all the previous American prevalence studies She then reported on the results of a sur\e) of retarded children In Marne m 1957 which was conducted b! mall questionnalre She received rephes which covered about 70 per cent of the combmed school enrollments and mstltutlonahzed children (all with IQ’s under 75) Levmson found that males constituted the maJorIt\ of retardates at all IQ lebels At loa IQ lebels retardates usualI\ had observable physical deformmes and organic brain damage 4ge-specific prevalence Increases from 5 to Il\r and then declines The preponderance of male retardates m comporlson to females was highest In rural areas Lekmson argues that this findmg was due to greater social and cultural pressures on bols m rural areas 411 of these studies shon a strong tradmon for a communlt\ prevalence methodolog\ Whereas the earl\ studies uere bornewhat lImIted m their concern lor social factors the later studies shots a greater concern for these fdCtOrS In summar\ these btudles sho\I d high proportlon of social dIsruptIon among famllleb \rlth high lebel retardates Mmorn\ children are overrepresented among those labeled u tth mmlmal retardation However the studies show a lath of conslstent! m the detinnlon of mental retardation Thuh the prevalence figures \ar\ from stud\ to stud\ B HESTER\

EL’ROPE-SOCIAL

EPIDEMIOLOC~

11ITH A PlfRPOSE

Ndtlonal Health ser\lces habe led to a research perspectl\e concerned H Ith understanding the bacbgrounds of people \\ ho I\ III use government-oriented ser\~ces There IS al30 an Important element or eialuatlon of eilstmg programs These general orlentldt1ons hale led to sur\e\ studies ofthe characterlstlcs of those u ho hd\e certain tapes of medlcal bIologIcal or social disorders using rather sophlstlcated method3 In mental retardatron tao research programs ~111 be discusbed a> e\dmples or the tradition Both were done In England In T/W ,\lt~rc~ll~ Hmdrtapprd ad

Tlwrr Fwt~rlres Tuard and Grad [ 161 report on a social sur\eJ begun III 19% ol the problems of iarnlll2, ulth a se\erel\ mentally subnormal mcmbrr This differs lrom the East Coast Pre\dlence Studlss where the cntlre range oi mental retardanon IS used Th2 authors looked at the cas2s reported to the Mental Detictency SectIon of the London Count\ Council The\ also looked at mstltutlonahzed defectlvss Thus thetr stud! looked In detail at famlhes m I\ hlch the mentall\ retarded mdlvldual remams at home m compartson to the hmlhes In which the mentall) r2tarded famtly member has been mstltutlonahzed InformatIon \%as obtained from hospital and health department records mtervtews ulth a member of the patlrnt’, family standardized psychological tests and mter\ teus with nurses m charge of the patient 3 ward Tlzard dnd Grad found man) slgmficant results Thrre ws no difference In social class standmg between the home sample famthes and the mstttutlon sample famlhes The mstltutlonal group had slIghtI\ more broken famlhes The home sample hmlhes contamed many more famdles rated as poor due to having an extra dependent member Mental defectrves tend to be ths youngest chtldren A higher percentage ot stblmgs of mstrtuttonahzed defectlves had mental health problems than the slblmgs of the home sampls Thus parents who have more than one difficult child to copeulth dre more Itkelj to seek mstttuttondl crlre The principal reason for placement in an institution wd3 management problems Mothers wanted to know about thtxr children s problems JS soon as possible These results partially differ from the East Coast findings because the high level retardates wereexcluded from the London stud) Othzr studiesof the Tlzard group x2 concerned v.lth program e\aluatlon and e\aluatton of communrt> services [3 17 181 The second group of studies to be dIscussed rslate to the work of Stem dnd Susser The\ consider them,elves social medics’ concerned with the stud! of cpldcmlologlcal barlables m disease The aork to be rsportsd relates to their work m Salford England Stern and Suss2r are presentI\ workmg rn the Unrted Statss at the Columbia Um\ersltF School of Public Health Stsm and Susser karled their sample> m d numbsr ot different htudtes m Salford England land other nzxb\ cltlest In The Social Dlstrlbutlon of hlsntal Retarddtlon’ [ 191 the1 surveyed ,chools Their mdlor conclusion wds that mental rxtardatlon In clmlcall\ normal mdlvlduals IS ;I sjndrome ~peafic to the dsmotic subculture 1father IS a manual workrr and no tarnIl\ member hdd attended grammar school) The dsmotlc subculture IS dlstmgulshed from the asplrdnt subculture m u hlch the father IS In ,I non-manual occupation or one slblmg had attended grammar school The authors lound that chances for school advancement were generalI\ greater In dsprrant famrlles than rn demotlc famllles These general findings xe lurther ds\slopsd In othsr

papers In the serlss ot paprrs cntnlsd FJrnllltth ol Dull Chlldrcn Stem and Susbsr [J&X] .trpur that brarn rntursd chlldrcn corn2 from 2:rthzr d2motrs or aspirant famlllcs ClmlcA\ normal rrttxdatss ImIld retardate>) come onI\ from the dsmotlc wbculture Morso\sr slmlcall\ normal rstardatcs >ho\\ Intsllsctual adidncss In adulthood In hllld hl2ntA SubnormalIt\ Social and Ep~demrologlcal Studies St2m and Susser [Y] btat2 thdt It 13 possible to better predict de\lance b> SOCIOI than b\ clmlcal or mtsllsctu~l crlter ia Th2 studies of Tlzxd and the >tudles 01 Srcln dnd Susser shorn J parallel dci2lopmsnt ~71r232xch IntO the problsms m\ol\ed In soclocultural asp2cts of m2ntal retardation The\ go be\ond the tradItIonal pre\alence studies reported on thr Edst Coa>t 01 th2 Llnlt2d States hv lookmg at the boclal d!namlcs 01 famlhrs ol rztarddtes The\ also prrsent some ol the lirst rsssxch lindmgson the stud! ofscr\lcr deh\er\ s\,t2ms lor ths mentall\ retarded Thus the\ utlllze ressxch to gnm an understandmg of th2 rslatlonshlp bet\\2cn sharacterlsncs ol famllles Jnd the sen~ccs n hlch the! ~132 Houeber therr tindmgs hair not been e\trnwcl\ rncorporated Into the social resedrch sndearors 01 Amerlcan studies m the soc~olog~ of msntal rstardatlon

C SOCIO-BEH 9\ IOR 4L RESE 4RCH Since the Iate 1950s Pac~tic State HobpltJl III Pomona Calrforma has been th2 c2nt2r ol SOCIOCUItural research In mental retardation In this countr\ The earl! research was prrmarll\ qxdemrologlcal In p2rspecri\s For example Kramer ~‘r trl [X] made a studs of the methods lor determmmg the prohdblllt\ 01 release death and retention tor patients admlttcd to Pac~lic State Hospital 4 series 01 papers were done on the natural hl>torh of mental deticlrnc\ at Pxrfc Stdits Hospnal In the first paper Tqan et (11 [Y] looked at the prohahllltres of reledst: and death b\ age IQ dnd dragnosls The sample Included d cohort of patlent> admitted to Pacific lrom 19-K-1952 OLer 40 per cent of the first ‘Idmlssrons \icrc: drdgnosed L~mlllal or undlfierrntlated mental deticlenc\ Those patlsntb gI\cn these diagnoses tended to hale higher IQ scores than other ddmlsslons The lounger admIssIons hdd more sewre disorders than older ddmissions The\ further found that ths chances 01 sur\l\al xz most rmpaired In the loung Jnd be\ercl\ retarded pdtlcnts The second paper m the earl\ Pac~tic >tudles looked Jt mentJl\ retarded chlldrcn admuted to Pnc~tic prior to their sixth brrthdd\ [263 Similar to the results In the tirst stud1 It wJs lound that lounger patients \iere more be\erel\ defclent with more hdndlcaps than older admIssIons The mortdllt\ rate lor th2 boungsr patlenls ~JS high during the first \ex 01 hospwllzatlon a Ith d \cr\ hllght chance of reledsr during the tirst 4 jr of hospital lrlr The wberely retarded \oung ddmlwons cdme from J cross sectlon ol the general populCl~loll

Socxtl Idctors m mental retxdauon The thtrd paper presents a ver! mterestmg brtdge betueen the more tradntonal epldemroloptcal stud! and the mcreasmg concern for the stud\ of soctal factors tn mental retardation [Y] This paper looked at the demographtc chxactertsttcs of Hurstadmtsstons For example tt \\as found that those patients wth a mild mental retardation dlagnosts had a higher release chance These patients tended to come from low SOCIOeconomtc bxkpround or from mmorn> groups The\ are usually ddmttted during adolescence as the result of actrng-out behavtor Tuo strongI\ soc~olop~c~ll~ research approaches groA out of the earl\ studtes at Pacific The worh of Jane Mercer represents the soctologtcal approach as tt turned tram the state hospnal to a stud) of retardates In the communn! Robert Edgerton represents the anthropologtcal approach a Ith a concern for ltfe st\le of retardates tn the communtt\ and In the mstttutton Mercer took part m d maJor stud\ of mental retardates tn RtLerstds Caltfornta 4 case register uas deLeloped of ,111 tho,e persons who t\eere tdenttfied as mentall\ retarded b\ one or more communttb agencies It was tound that persons referred as retarded had a number of mterestmg charactertsttcs Persons who mere bet\*een 5 and 23 \r \\eere overrepresented m the register Persons from the poorer sections of the commurut\ Mere oberrepresented and those from v.ealthler netphborhoods were underrepresented When SOCIOeconomtcstatuswas held constant Mewan-Amertcans nere o\errepresented blacks appeared n-t proportionate numbers and u hates were underrepresented hlercer 1s prmwrll\ Interested In the effects of labeltng [3] She looh~ at labelmg from a soctal system framenorh She argues that a mator ltmttatlon of mental retordatton research has been d concern utth the clmtcal or eptdemtoloptcal aspects of the problem Research at these Ie\sls tmpltes a medical model a hlch hlercer sJ\s IS not the best one to use It IS more Important to tahe a social sistem perspectt\e In whtch the concern 1s\\ tth the mdtv tdual hts famtll and hts communtt\ She has spectficall> found that the school 1s a prImat-\ labelmg qent [29] The effect of the school Idbel of mental retardation has ramtficattons on all the labeled child 3 socldl relattonshtps However Caucastun children e\pertencs more negative effects of labeltng m then home sttudtton than do Mextcan children hioreo\cr children \\ ho are behabtor problems tn school Jre more Ithcl\ to be labeled retarded than children \\ ho are better behaved hlore children wrll be Idbeled retarded In schools u here prmctpals havea deep concern tar >pec~dl cducdtton Edgerton ,tudted the adtustment of retarded adults In the communn\ During the period beween 19-W 19% I IIt patients ~uccesstull\ yaduated horn a vocat~onal trarnmp program at Pdcihc State [?O] After dtscharge tl11s cohort \\ds follo\\ed to see hon the\ adlusted to the communn\ Edgerton used a case stud\ Jppro,tch He NJ~ concerned v\tth the cohorts responses to Iifs tn the communn\ He tound that these former pcltrents tried to conceal then retardanon and

409

den\ the ream! of then problems He cnes then frustrated attempts to pass as normal He also found that those former pattents I! ho had commurnt\ benefactors to look after them uere able to make better communtt\ adlustments Edgerton also collaborated on a number of studies of the culture of the mstttuttonaltzed retardates For example Edgerton and Dmgman [3?] studted tattoomg The\ found that tattooing Has common among patients who were members of the elite pattent group The! also found that tattooed patients get mto trouble wtth hospttal authorttres more often than non-tattooed pattents MacAndrea and Edgerton [32] discussed frtendshtp m a hospital The\ found that shdrmg IS clearlv a feature of the relattonshtp There was ver\ ltttle hosttIn> tn frtendshtp Then relattonshtps were tn no vvd) overtI\ sexual Edgerton and Sabagh [33] srudted the self concept of mstttuttonaltzed retardates The authors discovered that pattents mdmtatn then posrttve self Image through self aggrandtzement Edgerton and Dmgman [3-t] dtscussed dating patterns among pattents and found a number of postttve consequences Improvements aere noted tn control over ttme and space abtltttttes to emplov techniques of subtle communtcatton understanding and tnternaltzatton of rules for acceptable behavior and control of sexual Impulses Edgerton [35] found that the ehte pattent culture modelled itself after the culture of teenage delmquents Thts culture #as directed toHard allowmg members to enlo! ltfe as a respected member of an elite group It also allo\ned members to separate themselves from the mentall! and or phvslcall) subnormal pattents tn the hosprtal and see themselves as vtstblv superior to such patients In summar\ the socto-behavtoral research trend shows some mterestmg offshoots It starts out tn the mtd- and late-1950’s wtth eptdemtologtcal research on mstttuttonaltzed retardates Thts research tncluded some concern for the soctal charactertsttcs of retardates Uttltzmg btologtcal and soctal charactertsttcs cohorts of patients aere studted to see the effect of u-rstttuttonahzatton on the natural htstor! of mental defictenc) The 1960s sag a great expansion of research endeavor on the soctal effects of labeling Thts research used a communttg prevalence model stmtlar to the East Coast studies Thus IS ahere the stmulartt) ends Mercer used the prevalence approach to accent her own Interest m the stud! of mental retardation from a soctal system perspecrtve rather than a strict eptdemtologtcal model Edgerton used ethnograph) to stud) the 111sstile of retardates n-t and out of mstttuttons The concern Has utth the hfe stile of the retardate rather than the ltfe stjle of hts parents as the Enghsh studies u ere

D CRISIS RESEARCH There has been some research done m htch presents mental retardatton as one problem to be studted ~tthm a larger soctologtcal frdmemork The worh of

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LOl

15

Ro\\ IT2

B2rnard Farber wrll b2 drscusscd ds an s\nmplr on this approach Farber s \\ork 13 An ofshoot oi the work done at the Instltutc lor Reszarch on Exsptlonal Children at the Llnl\srslt\ of Illmo~s In the I9503 Farber a farnIl ~oc~ol~g~st first ~a> mvol\ed b\rlth a strIctIF cpldemlologlcal study ol mental rstardatlon [?6] 4 study was undertaken of the prelalencz ol 2\ceptlonal children m Ilhnols m 19% The sur\e\ collected data trom teachers and local school ddmmlstrators The count) superintendents sollatzd the data dnd ,ent It to the State of Illmols Oftice of Public Instruction The sstlmate of prevalence per 1000 populatlon was I8 8 for the 6-15 Jr age group It was found that rates declmcd slIghtI\ In the upper age groups Spsc~ticall) prevalence stsadlli Increases until the age oi I-1 jr and then declines Farber’5 further research m\ol\ed the studv of parcnts ofretarded chlldxn He undertook a studv ot Chlcage parents with a ssberel! retarded child H ho were Included on the mailing lists of assoclatlons lounded for promoting the welfare of the mentall\ retarded 137-393 Farber points out that defimtz blaxs occurred m the samplmg However Farber believed thdt most parents of severelq retarded children ~111 have some contact with a parents assoclatlon Farber s concern was with the adaptation of famlhes to the crws of a seberelv retarded child He found that the marital mtegratlon of parents of mentall\ retarded boys at home was lower than that of mentally retarded girls The presence of a retarded bo! In louer clash lamlhes had d more xute affect on the mtegratlon of the parents marriage thdn the presence of d rstarded girl In the middle-c&s tamllles the se\ of the rstdrdsd child has not related to the degree ol mdrltal Intsgratlon of the parents Older bobs hale J mor2 dlsruptl\e effect on d parents marriage than vounger boks With mstltutlonallzatlon th2 differential ef5ecth ot ha\mg a retarded child on marrtdl Integration tends to disappear The retarded child’s srblmgs usre adl2rseh Jlfected by a high degree of dependence ol th2 retxdzd child The normal sister was helped b> placmg th2 retdrded child In dn mstitutlon b2c~ux her houbshold dunes were lessened by placement The data shorn that particlpatlon m the CJthollc church and or Catholic defimtions oi horn2 dnd farnil) life \czre supportl\e It was found that trequent mteractlon \r~th the \\~ie5 mother was related to high mdrltal mtegrdtlon Farber’s research Izd him to define dliTer2nt tipss ol tamely organization which affect mxltal mtegrotlon and se\erlt) of farnIl\ crlsls for parsnts of retarded children [JO] The child oriented TarnIl\ bubordmdtes the r2latlonbhlp bstw2cn the parents to md\lmlze the Ilk chance ol the chlldrrn Parent orlenred famlheb btress the parents occupatIonA Jnd soml care2r3 dnd thus th2 retardsd child has d bscondar\ position in determmmg the life chances oi lamlIt msmbcrs FmJlb home oriented lamllles are onsb In which ths lather disregards his personal carrer In order to mdmtdm lamil\ unit\ Mars crIsIs rsxxch I> nsrded Fxbrr > hlpothesss

and tindIng> n2rd to b2 rspllc~tsd G)II other popul~tlons One mtcrsstmg 2\t2nslon ol Fxh2r s .lpproxh 15 lound In th2 tiorh ol Arnold Blrsnbdum C-411 Hs lound that mothers cJn cop2 bsttsr ulth rstarded children {then th2) Jr2 \oung b2c~use ths shlldrcn ot the pxsnts trlends x2 ‘1150 \oung Thuh It 13 posslblr: to simulate normal-Jppearmg dctl\ltl2s Whsn th2 children Jr2 older II I> much more difficult to mJmtam th2 appearance 01 d normal lamll\ It 15 dt this point that coping hecomss mars difficult With the crisis rcssarch p2rbpcctl\2 th2r2 13 J consclous attempt to d2\2lop &I soncrputdl model b\ \t hlch to ltud\ the prohl2ms o1 ths rstdrd2d Jnd thclr families Whersas the conceptu,A mod21 15 \\slI dc\eloped the research findings relate to 3 \erl specldllzsd population (members ol parsntb d>hocldtlon) Ths crisis persp2ctiLs IS the onI\ completeI\ ~ociologlcdl perspectlre of those discussed

\ S\ \THESIS Although thcabobe r2Lrew OI the lltzrature has been presented ds four dlstmct research approdches all approaches seem to hate an epldemlologlcal tradition u hlch can be traced back to the \\ork ot Lewis In England Th2 East Coast Prevalence Studies have been the most tradItIonal In that th21 lotlou a communlt\ preial2nce model The concern IS \s Ith the amount and degree of mental rstardntlon In a >pccrlied area Soms m\estlgators continue ths rehexch approach b> contrabtmg mstitutlondllzcd dnd non-mstltutlonaltzed retardates The Webtsrn European r2search m\ol\sb the stud\ 01 the backgrounds o1 psopls who ~132 national hsalth serllce faclhtlc, 43 with mani OI the late East Coabt btud12s this rescxch also contrast5 Instrtutlonal and non-mstltutlonal populations Specific differences in th2 t\\o dpprOdCheS can bs sesn b\ noting that the EM Codst btudles shoa J higher proportion ol ~OCIJ dlsruptlon among th2 rnstltutlonatlzsd cases thdn doe> the London Stud\ ol Tlzard dnd Grad One probdbls r2dson for this IS that ths London Stud! \\ab sontin2d to th2 bs\errll\ rstdrdsd The Amrrlcxn Stud123 also \12u the lowsr soclo-sconomlc group A If It IS J coh2slve unit The studies ot Stem and Susssr bho\\ thdt th2 lower ~OCIOeconomic clas> IS made up of dn2rs2 groups u Ith dlflerent iIre ,til25 The soclo-behJi lord1 rsssdrch and crIbIs restarch pzrspectlves x2 more soclologlcdl Th2 lormcr IS concrrn2d ~rlth tinding J relatIonAlp bet\r2cn comrnunlt) preralsncs dnd the rrlmlticdtlons 01 the bocldl procesb ot labslmg Life stble ,md Ilk chances are atX2ctsd b\ ths rn2ntJ retardation lab21 IVlth ‘I concern lor the process ot labeling the CJlllornld rswarch begins to notice J rather cornpIe\ w\Ice dsll\eri system In the communlti It WA not until the Llte 1960~ Jnd earl\ 1970 3 that this dlmsnblon begJn to be iniewgdted in borne detail [-PI Crlsls Rwxrch 15 more orlented to J ,oc~olog~cJ concern \\lth tip2, al idmlhcs and hov. dlfl&rnt tarnIl\ t\pe> cope MIth J hLindrcappsd child

Socidl Idctor\ In mental retdrddtlon

-III

This research tends to he the least ep~demlologlcal or . nell as mentdl llinessb seems to be more prevalent In middle thdn In loser class communmeb all four trends as 11develops ’ Thus It IS Important to stud! the farnIl\ and IIS Soctal research m the 19701 needs to Integrate the \arrousapproaches Instltutlondllzatlon IS noa \le~eed retardation problem from a number of perspectlveh as onl\ one possible treatment outcome The developFirst the Idrnll) maI be studied dIrectI> In 11shome enmcnt ot communlt> wr\ Ices u 111change the serwce use \~ronment This t\pe or stud\ would center upon pattern of the retdrded [43] In order to look ahead farnil\ ddlustment IO the ldbeled or elqble lnonthe follou mg I> one possible begmnmp of a qnthesls Libeled) retardate Coping mechanisms could be mvesof the pre\~ousl> discussed research findings as a prettgated The relattonshlp of the farnIl> to other comrequwe to further soclologlcal research mumrj groups can also be tnvestlpated Second the In mental retardation the farnIl> must be \Ie#ed as stud! of the retardate and his farnIl) can be done from the perspectr\e of the labeling agenq groups or mdlthe central core of dn\ understanding of the SocIaI \ Idud! rdmficdtlons of mentdl rstdrddtion It I\ nrthm the rarnll! that declslons ~111 be mdds concerning the With dn anxeness thdt a problem e11s1s the farnil\ farnIl\ member u Ith J mental dctficlenc! problem The must seek ,I place that I~III serve their needs The\ thus become consumers loohlng for servtce Most research Alit! orths tarnIl\ to cope u Ith rhe problem IS depen111the past has looked dt the use of public resldenttal dent upon a number of social psichologlcal econoinstltutlons The dnersificatlon In serl~ces oker the last mic demographlc and medical factors In addition to decade has presented the researcher with a ser\Ice relathese Internal dewIons the farnIl\ must be seen as part tionship that takes place I\ lthm a non-residential comof d communit) network made up or other families munit! service school3 churches busmesses publrc and ptxate agen4n admIssIon to a treatment faclllt) whether restcies and so on Each of these communlt\ sources ma\ dentlal or non-resldenttal IS affected b) a number of put pressures on a green farnIl\ to make certain declorganlzatlonal conslderatlons The service hclht\ slons concerning a de\ lant farnIl\ member defines the population that II IS ulllmg to serve Thts It IS usudll\ d communtt\ source which labels a child definitional process IS a policy function of the central delinquent or retarded The dhilit\ to accept the label admmlstratlon tts board of dwectors financial con\+ III \ary In different farnllle> The time of the labeling siderations or in the cdse of public facilities gobernallI alho var\ The wereI> or profoundI> retarded mental decision-making Second the serbice personnel child ~111 m all probablllt\ be labeled edrl! In Me He 01 the agencb ma! also define the cases that the\ are ii1111probabl\ be ldbckd h\ some medical source The ulllmg to serie This defimtlon rnak or may not differ lehs beverel\ retarded mdl\tdudl 11III usualI\ be labeled from the ddmmistratt~e definmon Thud service uttlllater b\ some non-medlcal source such as the school zatlon IS afTected bj qenq relattonshtps wth the comLabeling u III dfkct lamll\ relatIonshIp II the child I> se\ereI\ or profoundI> rerdrded the farnIl> ~111 ha\e munit! SocIologIcal resedrch should be concerned with the to mahc a treatment declblon This IS usualI\ done m stud! of the referral process ~lth all Its ramtficatlons d~sociation \\ith d medical or para-medlcal >ervIce This \rould Include epldemlologtcal studies of serllce The fJrnll\ ii111 ha\e to decide \\ hethsr to keep the use patterns In different sert~ce deltrer! systems The child at home or mstltutlonallze him Thlb dectslon wll farnil\ the commumt> and the serwce agencies all mbe affected b\ communtt\ resource3 d\dilable \Vhere teract to create a cornpIe\ system of social organlzathe child 15 less be\ersl\ retarded the problems are tlon which affects the serrlce utlllzatlon patterns often more complicdted First the llhellhood of being related to the mental11 retarded It IS \n~th these Issues Idbeled mIldI\ or moderdtel\ retarded seems to Inthat the social researcher wll he mvolbed m the future creabe In IoRer >ocIo-economic classes \‘arrous ethnic group5 IbldChs hlexican-Americdn etcl are more I~hcl\ to be Id&led retarded than u hate children -Ic~rrol~I~~g~nlurrr-The author N lshes to express special Second the school 1sa prlmar\ Idbelmg dgenc\ Third that& IO Pamela Nellessen for her help In the preparanon the school label beems to hale different effects on dlfof thl\ paper tercnt soclo-economic cla>bes 4 mental retardation I~bel has an extremeli negdtl\e effect on the middle REFEREYCES class Idrnll\ N hers up\rxd moblIlt\ and occupatlonal Fxber B ,\lznral Rt rcz~darror~ /IS Sotrul Cower uud tr~ininp 15 dssumed to occur primawl\ in the educdSocr~l CO~~~~~IIL~~ Houghton Mifflin Boston IYhh rlonJl x?ttmp 1 mentall\ reurded child affects the 0 Connor N and Tuard J r/w Socrul Prohltw~ of Urnprsstlpe of ths Idmll\ The Callfornla research argues rrll Dehcrem L Pergamon Press London 1956 111~1 the mental istdrddtlon label hi le~ negdtl\e Board of Education and Board of Control I E 0 Let\ ISI SHSCI on the loiter ~/AM mInorIt\ member mlldl\ Repot I 01 r/w ,Afeuro/ Lkhtrrnc\ Com~~rrer I 1% ood ret&llded L~bsl> do not seem to carr\ o\er Into the Repa II London 1929 home communn\ The child I\ dble to adapt to comFar13 R E L and Dunham H \h’ Ur!mjl Dlsordur UI munit\ 111s~JII~IXIC)III\ 4 mental rstxdJtlon ldbel I jhu -ltros Halncr lvcu lorh 1960 docw I Jtlect the pre3tg.r: 01 the I~rn~l\ Fdmil\ e\trJPdrb R E H~rw~rr COIIIIIIIIIIIIW~ Free Press Glencoe 1952 \IO~ ol J child \\ lth .I nwnt II problem ~ret~rdat~on JS

412

LOCIS Ro\\ ITZ

Jenkins R L and Brou II 4 W The geographical dtstrtburlon 01 mental dstts~cnm In the Chtcago .uea Pro1 4nr -tss o\ r/w Srud1 o/ Vr’rlr Drmrcrlc L p 291 1935 Lemkau P T~crzc C and Cooper M Mental hvgtene m an urban dtstrtct--I Vrrrr Htq 25. b2-l 19-41 Lemkau P Tletze C and Cooper M Mental hvglene in an urban chstrtct--II ,Mmr HI~ 26. IO0 19-12 Lemkau P Ttetze C and Cooper M h4ental hvgtsnc tn drt urban dtstrlct-III Lftirn H\g 26. 2’5 lY12 Lemkau P Ttetze C and Cooper M Mental hvgtcne in an urban dlstrrct-I\! \frur HIP 27. 2’9 I913 Jastak J F MacPhee H M and Whtteman M ,Ifeural R Puhl 67. 8 I I 1969 Kramer M Person P H Tartan G Morgan R and Wright S W 4 method lor determtnatlon of probabtltncs of stdv release and death For pattents admitted to J hospttdl durtng the period 194&19s2 4 J Zf.wr Drhc WM , 62. 48 I 1957 TJrJan G &right S W Krdmcr M Person P H dnd Morgan R The natural htstorv 01 mental deliclencv m J state hospttJl--l Probdhtlltles OI release and death bv tgc tntclllg~ncc quotlsnt Jnd dtJgnosts 4 J Dir Child 96. 6-t I Y5b

30

Tarldn G \Vrtght S \\ Dtngmtn H F .tnd Sdh.tdh G The nJturdl htstorv 01 mcntdl dchclrns! !n J 31I[S ho+ pltal--II htentdllv d&tent Lhtldren Jdmtttcd IO J st~tc hosptrnl prtor IO their sI\th htrrhd.t\ t J 111DI>L~/>~> or Cllrldr.~r 98. :-n 1959 T,trtanG Q’rtghr S IV D!ngnLIn H F tnd E\mJn R Ndtural hwor\ 01 mcntJl drhcictw tn J stJlc hoy?itJi -111 Selected sh.trtctertsrtc> 01 hr>r tdmtsstons .tnd rhencn\tronmcnt 4 J DIA C/I//./ 101 lY< 1361 hlcrcer J R Soclosultural Iactors tn Ltbsltng mrntdl retardates Ptubotf~ J E./II~ 48. I’X 19-l Robbms R C Mcrcer J R Jnd hlslers C E The school as J selecrmp-labeling r\>tern J St11 P,~tlr~ll 5 2-O 196’ Edgerton R B J/w Ckwh ,V C~w/~t rL uL6 t_[nt\srstr\ 01

Cdltlornla Press Berhlev 136’ Edgcrton R B xtd Dtngman H F T~ttoamg Jnd tdrntit\ /ur J Sot Pl\thr,lr 9 141 136: C and Edgerton R B On the possth~l~tv 32 hlacAndre\v of friendship i J \ftwr D&wm L 70. hl? 1966 R B dnd Sabagh G From morttticatton IO 33 Edgerton aggrandaement changtng self-concept> In the cxecrs ol the mentall\ retarded P,lLhwr~ 1 25 161 1962 3-i Edgerton R B and Dtngmdn H F Good redsons tar bad supervision dating m J hosptral lor the mentdll\ retarded P,\thmr Quart Lppl 2. I 136-t Edgerton R B 4 patient c111e sthnographv m .t hospttal for the menrallv retarded -I J \fmr D&cwm L 68. x7-’ _ _ l9b3 chtldrcn tn Illmots !b Farber B Prevalence ot r\cspttonal Imrl IIL rm tn 19% 111 Super ~~rr~rldt~rrr 01 Puhlk

!I

Springfield 1959 Farber B Effects ok J. se\rrsl\ mentall\ retarded chtld on lamtl) lntegrarton .2lojto Sol RL’) IO Chrld Drttl 24. I 1359 dnd crlsls mamtendnce 38 Farher B Famtlv argdntzatlon ot tntegrdtton m lamtltes wtth d severeI\ retarded chtld ,\lorro SOL Re\ ,,I C/u/d D~IA 25. I lY6U organlzatlon Jnd 39 Farber B and Jcnnc W C FJmtl\ parent-child communtcdt1on pdrcnts xtd stblmps ol d retarded child \forto SOL Rt*\ 111Child DL ~rl 28 I I Y63 shtld-ortented 40 Farber B Tapes ot Iamllv organwtton home-orlentcd Jnd parent-ortented In Huwarl Btihatwr arId Smml Proccsws (cdlrcd b\ Rose A hl I Houghton MttRm Boston 1962 Btrcnbdum 4 The mcntnll\ rrrarded Lhlld in the home and the Idmtlv cvcle J Hlrh Sr SOL Br4rL~~ II. 5s 19’1 L~I T Rou~rz L Butler E I+ ,tnd hlc\lltster R J An ccolog~cal b!ud\ OI Jgencv Ltbellcd rctxdates in J merropolttan rlred 4 J Vtur D&c I~IM \ In prcbs 11 Ro\r~u L Changing perspsctttes tn \OCI~I eptdemtoloy cdl research !fL,rrrrl/ Re~rL~lr/t~~!t~~~ In prem

3’