I Never Knew I Coutd Stand Up to theSystem: Families' Perspectives on pursuing

Inclusive EducationElizabeth J. Erwin

Queens College of the City University of New yorkLeslie C. Soodak

Adelphi University

The purpose of lhis strtJ wai to invesliEate the eri-periences encountered by parents commiled to inclu-sive edncation for theh childten teith disabilities. In-depth inteniews of nine st dy pa icipants t,erc ana-lyzed rc idcnrif! common themes related b thpterpeiences and perceptiohs. Resuhs rcvealed tlfttparents derired inclusive education, because theyeiewed b as a lundamental ietu lor the, chitd.cn.Most impo an y, frndines indicated tha! parcn| em-ploJed numercus st.ategies ro oblain inch$ive educa-tion for thei chitdren. often seeking assisfttrce ftomth? coutts and meilia. TheseJindings suggert th? needlor neaningtful fanily ahd schoot collaboration.

n-ESCRIPTORS: ethnographic research, parenr_professional relations, parents, placement

. The emergence of full inclusion as a conceplualIi.amework for cducating chitdren with disabiliries hasgererated considerable atention. Several impo(anrinitiatives regarding $e education of children with andr.eithout disabilities bave been observed nationally in-cluding expanded federal funding opportuniries andtbe National Association of State Boards ofEducationlepgrt (1992) outliniog specific dirccrives for promor-ing inclusiv€ educarion. Originally, inclusive educa_xon em€rged from ethical issues and civil rights argu_:t:lts (Broun et al., 1989i Lipsky & canner. 1989;stanback. Srainback, & Forest, t989)- Current ctts_c,usstons ofinclusivE education have movcd beyondIne phrlosophical and cthical qucsrions and now focusonways to suppon children with disabiliti€s in naturalenvlronmcnts (Giangrcco & purman, t99l: salisbury,l"9r91T: { Hollowood. t993: Srainback & Srain-back, 1992). Bikten (1992) points our thar suc.essfultnclusrvc schools consider how to include children

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JASHr95, Vol.20, No. ?, t36.l46 opyrjghl tqajbyrne Alioc'itron ior Pcrsonr *ith Scv(c H0rdr.lps

with disabilities in their home school insiead ofaskingwhv.

Despite the exisrence ofpolicy stalements and otherinitiatives in suppor! of inclusive education for stu-dents with disabiliries, therc is a sharp contmst be-tween the oprimism emerging from the nationaldiscus-sion of inclusion and whal is (or is noa) occufting re-giodally. ln New York Slate (NyS), for exarnple,therc have been several efforts to promote inclusivecducation includi ng federal- and state-funded proj€cts,numerous state and local conferences, pareDt associ-ation advocacy, and professional organization acdvi-ties. However, there are still many faclors thal lkni!the accessibiliry of inclusive education.

According to Advocaaes for Children (t992), schooldistdcts in New York State have one of the lowes!rates of gen€ral educarion placernents for studentswith disabilides in the counlry. For example, in NelvYork State, 7.02o of the students with disabilllies be-tween the ages of6 and 2l years are served in gencraleducation classrooms in NyS, which is far below thenational Everage of 32Zo (U.S. Depanment of Educa-tion, 1992). Addilionalty, children with disabilitiesages 3 to 5 were se ed almost lhrce times mo.e ofenin special edllcation .ather than ir general educationpiacements across NYS (U.S- Depanment of Edllca-tion, 1992). New York was ranked second to lasr na-tionally in providing inclusive education according to arecent report on inclusion for students with lndntalretardation (Associarion for Relarded Citizcns[ARC], 1992). Thus, atthough cffons are being made bpromote inclusive education in NyS, inclusive place_ments are not available readily lo Darents who deshethis opdon for their chitdren

The sysiemic changes needed for inclusive educa-tion are complex and time-consuming. There are fewopoons available to parents who desire inclusive edu_cation while slate and locai policjes are reconsideredand relised. The significance of this problem is high-nghted by dara indicaiing that whcn parents ofchildrcnwlth drsabiliries in NyS were asked which placemenr

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t37

lhev would choose for lheir child, the most frequen!res;onse was a general education class (NYS Com-mi;sion on Qualiiy of Care for the Mentallv Disabled'1990). It is difficult lo expect a parent to wai! untilslale Dolicies irnd procedures change' parlicularlywhen tarrierc to chanee lend to be financial and polil-ical, Advocates for Children (199) suggest that sev_erai statutes and regulations in NYS contribule to thelack of available inclusive educational opponunities'They f nher assert that lhe p mary barier to educat-inc chitaren with disabilities in general education en-viionments is a funding formula in which financial re-wards for s€gregated placements far outweigh the fi-nancial incentives for inclusive placemenls'

Many parents in NYS are not wahing passively forpolicy changes !o access class plac€ments in general;duc;tion for their childreni they acl;vely are pursuingthese Dlacemenls. Whether or nol lhese parents areimmeiiatety successful in securing inclusive educationor facilitating long-lerm policy change, their experi-

"n""s .r" "iiti""i to understanding tbe process ofchange. As a means of lcaming from parents' experi-ences, this stuity describes perspectives of a smallnumbcr ofoarents from onc slare who soughr inclusivearlrrcarion ior their children with disabilities

MethodThe purpos€ of this invesliSation was to examine

criticatiy tne experiences encount€red by parenis in_

terested in inclusive educaiion for their children withdisabilities. Qualitarive methods were uscd to gatherdata aboul parents' experiences and perspectives'These meth;ds were selected b€cause lhe nature ofrhis studv requires an approach to research that pro-a.c.s aci and descriptive data d€rived from the studyparticipants' o\rn frames of reference (Bogdan &Bikleo, 1992).

Studv ParticiDanls bnd Seitingrrris stuav involved nine parenls from Nc\t York

cirv and surrounding suburbs who desired inclusivceducation for their children with disabilities All par-ticiDants lived wilhin a 60-mile radius of New YorkCity. Prospectite study psrlicipanls were identifiedlhroush several means. Two of the Parents wereknow; to one ofthe authors through a local chapterofan advocacv organization. The Association for Per-sons wirh Severc Handicaps mASH)' Thc relation-shiDs between lhe Parents and lhe aulhor can be char-acierized as casual, and contacts were limiled to con-ferences, meetings, and infrcquent telephone calls_Anolher parent previousty had asked one of lhc au-itrors to be an advocate on her behalf in (he pursuil ofan inclusive education ptogram forherchild by attend-ina individualized education phn (IEP) meetings Aco'ileaaue of both authors who had served as an advi-,oi,o-p-"n,t in their pursuit of inclusive educalion

suggested ooe parent for rhe sludy. Two additionalrrii"rr **. identified as arden( advocates of inclu'iion by one ol the parents menlioned above.

Additional study pa(icipants were identified at ameeting foi parents on inclusive ed\rcation hcld by alocal child advocacy organization. One of the authorsattended this meeting and asked for volunleers to par-ticioate in the sludy Eig.ht parents responded by re'tur;ine a form dislributed by the author' After th€meering, the researchers contacled thesc cight parentsbv leleDhone. Among other questions' parents were

".tea io indicate on a lo-point scale the degee towhich th€y were committed to inclusive edlcation lortheir child (i.e., I indicarinS to commitment and l0indicaling a very strong commitment). Three parentswith a strong commitment iovi/ard inclusion were se-

lected to partic;pate in this investigation. Thus, a totalof nine Jarcnts who were very highly interested ininclusive education for their children had been se-

lected-Although the sample sizc was small' an effort was

made to r;cruit parents from a varicty of backgroundsre-s.- seoeraDhic area, ettlnicity. socioeconomic s!a-iui i"-n."iing,l" a.tognphic diversitv ofN'w York'It was not the int€nt to exctude fathers; however' itwas generally mothers who agreed lo panicipate inrhis ;rudv, AII but one of the study ParticiPan(sworked o;tside ofth€ home. Two thirds ofthe partrci6ams had comDleted some collcgei the remaining onerlird had received hish school diPiomas ALlbulooeofthe panicipants wcre married at the time of th€ study'ResDondents were noi asked directly to repo( socto-economic status (SES) because of the sensitive natureof lhis informationi howevcr, SES q'as inferred fromDarcn(s) occupation. Approximalely one half of lhe.amote iivea i; New York cirv and one half lived insuburban communilies oulside of the city'

Study particiPants' children rangcd in age, ability'and cducational placenent. children ranged in age

from 5 to 19 yeara and wcre of diverse racial culturalbackcrounds. Fi!e of the nine childrcn spent some orau oithe school dav in spccial educadon classes_ Theremaining four childrcn were placed in ftll time gen_

eral eduition classes. Three ofthe geneml educaliooDlacemeots (two fullrime and one half-dme) wer€ notwilh same-aged peers. In t\{o placemcnts, the ag€ dif'f"r"nce was-2 years and in onc placement the age dif-ferencc was I year. Demographic data on study par_

ticipants and their children are shown ir Table 1

Dala Collecliooci".n ttt"t p"t.ntt' pursuit of inclusivc education

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to galher comparablc data

"..o.. ttudv putti"ipunts. This provided lhe basis forunoersrandini ttre ;iewpoints of participants withoul."ri ri"rltg tftJt" ui.*. uv pr€-cslablished raling scales

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or categories (Bogdan & Biklen, 1992; Stainback &Stainback, 1984). Thus, an informal forum was createdlor parents committed to inclusion to discuss freelytheir personal exp€riences and ideas'

Although themes and questions Senerally emergeduring qualitative research, an initial set of qucstionswas u;ed to facilitate discussions as well as to provideresearchers with coosisteocy and fleKibility across in_

terviews (e.g., dodifying questions, changing ordet ofquestions, asking iollow'up questions). Specifically'o"r"nt. *er" asked to discuss (a) how their child s

educational placement came abou!, (b) how they weredefining jnclusion. (c) what lheir experienc€s were inpursuing inclusive education, and (d) how the processof pursuing inclusion alTected tbem

Each ofthe nine study particiPants was contactedvia phone by one of the lwo investigators and a me€t_ing iime and ptace was established according to parcntcoirveoience. All thc parents were interview€d individ_ually by on€ of thc authors. Each int€rview lasted fromeO tL tiO minutes. Six ofthe parents wer€ interview€dat home. Two of lhese six parents m€t with rhe re_

s€archers for their ioterviews at one of the other par_

eot's home rather than in their own homes. Two par_

ents were inteniewed at restaurants, and one parentchose to be interviewed at her place of employment'One iorerview \\,as conducted per study panicipant'although some parenls weae also contacted by tele-bhone for additional information or clarification

Intervicws beean with a brief introduclion by Lhe

iole.viewer in which the purpose of the stldy, cotJi-dentiality, and consent for the interview lo be lape_recorded were addrcssed- lntcrviewers posed open_ended ouestions using the protocol stated above Par_ents wereencouraged to sp€ak freely and openly aboutthck gersDectives, experiences' and ideas regalding;.ctusive education in their communides At lhe end oflhe interview, background informadon was collectedon each of the study ParticiPanls

Data AdalysisBecausi data analysis in qualilative rcsearch is an

oncoins Drocess. the researchers separat€ly as well asjoiitty-norea tnemes and questions that emerged dur--ine

data collection. Thus, effons were made to under-st;nd the dala so that the integrity and nchness ofpanicipants' stories would be prcserved'

A[ ;ompleted iDterviews were lmnscribed from theaudio-taped version and read by both researchets whoindividlally noted questions, themes' and cornmentson eacb transctipt. Meetings belwcen the researcherswere held to re-read, review, aod discuss each tran_scriDt. Detailed wri(ten accoonts of lh€se meetingswerl keot to assist in understanding specific conceptsor schemes. A sci ofcoding categories was developcdto reflect emerging themes, interpretations, and con_cepts (Bogdan & Biklen' 1992; Taylor & Bogdan,

1984). Because this was a continuous process, catego-ries often had to be redcfined or collapsed qith othercategories to belter reflect emerging them€s For ex_ample, it was nolcd initially that most of lhe parenlsdescribed specific strategics used !o pu$ue inclusiveeducation from which emerged the theme "accessinginclusive education." within this theme, several top-ics (e.g., legal cbaoncls, key people, fledia coverage)were id€nlified and later merged inlo one calcgory(i.e., negotialing the system) to enhance the organiza-tion and clarity of the data.

To verify thc accuracy of the data, whicb were de-rived from a single interview with €ach palc , a draflof the present article was sent to each study partici_Dant for commenl and rcview. tnilially, s oflhe nineitudy panicipans replied to tlis request for feedback.These parents unanimously responded favorably tothe a icle and provided positive comments aboul theaccuracy of the data and results' Thc parcnts who didnot rcspond initiaUy io the requ€st for fecdback werelatercontacted by telephone. All threc oftheseparentsexpressed their strong satisfactioo with the articl€Only one of lhese parenis requested specific cha[g€spenarning lo rhe wording of$e demographic ioforma-iion. Thus. unanimous aDproval of thc anicl€ s con-tent and tone was obtained.

ResultsThis section provides findings galhercd iom oDe

semistructured intewiew wilh each ofthe nine parentsfrom the Ncw York arca who particiPated in thisstudy. Resuhs of the analysis are discusscd in terms ofthe follov/ing ihern€s tiat emergcd: (a) the mearitg ofinclusion to parcnts, O) accessing inclusive education,and (c) p€$onal tmnsformations. Although these par-ents do not teccssarily rePrcsent all parcnts' exPed-ences, their stories wele somewhat similar ard havesomething to contribute to professional understanding'

Th€ M€enitrg of Ind$sion to ParcnlsA sens€ of bclonging. To und€rstand parents' cxpe-

riences seeking inclusive €ducatiot fot t]rcir children,it was first necessary to examine whal inclusion mcansto tbem. S€veral difierent beliefs were expr€ssed, yetthese ideas individually contdbuled to a Mificd fiame_work for defining inclusive education' Consistett ineach paren!'s view ofinclusion were themcs such as asense of belowing, being part of llrc goup, and notbeins seDarale. Inclusion was chalacterized by oneoare-nt as "iust being part of re$llar life as much as

;ossible fro; birth on through life " Aclual visions ofwhat inclusioo would look like also emerged:

So I Diclure him silling in a group at one of lhoserahle; wiu. with mavbe four other, fiv€ other chil-dren arounal him And I picture them laughing aIIdleami4 togelhcr. ]

:

140

In addilion, parents regarded discriminalion as $eantithesis of inclusion lnclusion meani the oppoflu-nity to parlicipate in reai llfe evenls and 'not beingexcluded from anylhing, from any life acli!ity basedon rh€ facr that s child has a disability." In otherwords, a disability should not exclude a child frompalticipalion in any activity or event he or she wol.lldnaturally b€ involved in il the disability had not beenpresent. Parent expressed frustration about sendingtheir child with disabilities to a different school thanthe one allend€d by siblings. Additiotally, this de-privcd childrcn of interaction with neighborhood chil-dr€n.

This should not be happening. So at that poinl Icalled up my director from public school and said,"I want herout ofthis school and I vant herto beable to go to the sane school herbrothergoes to.She knows the kids in the neigbborhood." So toisolale Karen at scbool when all rhe lneighbor-hoodl kids were who she would see oltside ofschool didn't make seose.

Parentr viewed the importancc of being contccted 10meaningful expedences as nstuml and significant ele-menB ofchildhood.

The Juslice of inclusion; the lnjustice of s€gregetion.ln defining inclusion, $ese parents naturally discussedthe reasons lnderlying their co$mitment to it. Al-though ditrereni ideas were articulated about why in-clusion is so impoatant to parents, the messagethroughout parents' intervicvs foclsed on equal ac_cess and opportunity:

Inclusive education should be a right for all chil-drcn whether they're disabled or not. Just as itshould bc a righl regardless ofa child's economicstatus, social status or their ethnic background orreligious background, Children are our lurure nomatter what tbeir make up is.. -Ithink anythingyou would nordo wjth a typicalkid you should not do wirh a child with a disabil_ity. You must have lhe same standafds. I thinksociety has a way of holding kids, or p€ople withdisabilitics to a ditferent standard-

Study panicipanb felt it was unjust not to afford thesanc opportunilies to their child wilh a disabiliry ashad b€en aForded to other childrcn iD the family wirh_out disabililies. Parents also felt slrongly aboul theDeed tor acceprance of their child by society:

He shouldnl be segregated from lhe r€sr ot thew_ortd because it can t be that way for his wholeruettme. And people have to acccpt him and real-rze ne.rs parl ofthe community and accept him lorwhar he_is and whar he isn,t. And t d;n,r rhinksegregating him or kecping him avay from oth€r

children is going to be betrer for him or for theolher children.

These concerns clearly reflect a belief in a futdamen-tal liberty rhat grants a1l chitdren rhe righr to the sii]iopportunities and experiences. parents felt stro*-iilhat erercising such a righl would benefir nor "lil,their children wi!h disabilities and rhose children w;1i1our disabilities, but would culrivate societal accfp-

Th€ ri8htto choose. Alrhough study parricipants felrvery strongly about wanting inclusive education 1sitheirow_n chitdren, they also acknowledged the imps-._tance of choice for all parents in making placeDgnldecisions:

Iwould like if rhey lotherparents] would see it myway, bu! the bollom line is they should have achoice and so should I.

Allhough these parents strongly advocated for inclu_sive education, they recogdized tha! their pref€rencesand beliefs may not be shared by all parcnts. There_fore, lhe need for options seemed to be a far moreimportant issue for parenb thao the type ofeducation-al placement desired, because it provided a meaningfulrole in the decision-making process for a/i parents.

Accessibg Inclusive EducationThe journey for inclusion begins. Many of the nirre

pdents first became aware of the concept of inclusionwhcn the educational placement for lheir child wasbeing reviewed or changed. It was generally a profes-sional or another parent who raised the question,"Why doesn't your child go to your neighborhoodschool?" lhat planred lhe s€ed of rhe idea ofinclusiveeducation. Some parents learned of inclusion in otherways. Lena, whose child Jose was enrolled in a self-contained early childhood program from the a-qe of 6wecks, atlended a conference on inclusion rharchanged her life. She lefr asking hersetf ,.Whar am Idoing to my baby? . . . [Cs almost rhe eDd; he's goingto graduate preschool soon." Only in one situalion didthe school distdcr (which was involved in a federallyfunded projec! on incl!sion) approach a parent to otrerthe option of a placemen! in general education.

Once parents leamed about and embraced the ideaof neighborhood schools, many of them emba.rked onajoumey of self-educatioo tha! pr€pared them for theadvocacy rcles ihey would later assume. Several par-ents received a copy ofthe inclusion video tape ..Reg-ular Lives" (generally from an advocate) and used lhevideo tape as a learning tool to educate themselves,othcr parcnts, and iheir school districts, The more thestudy participants leamed ofinclusion, the more theircommitment to it grew. For most of those ioteNiesed,the path from concerned parent to advocate was grad-ual; it was notacodscious choic€, but rather a acaction

14t

to events tl:ey encountercd in trying !o secure wlralthey believed was best for their child

Negotiating the syslem: Making incl sion happen.With the exception ofone parent in this investiga!ion'a general educatio$ class was not offered lo parents asa placement option by the school district. Thus, ?ar_enl s developed and used several elaborate strategies toobtain inclusive education for lheir children. Table 2hightights the varicty of strategies parentsemployed topursue an inclusive placement for their child

Most of tbe nine parents used multiple approaches,either successively or simultaneously. For example,Efrie kcpt her son James out of school while obtainingassislaoce from various sources, iDcluding the ptess.Martha paid for private school placement while sbenegotiated for an inclusive setting in the local pllblicschool; she also sianed an after-school Play group althis time so that herdaughter would be able to interactwith aypical children.

More than half of the palents in this st dy had topursue legal channels after other efTorts to negotiatewkh the school failed. This tvpically involved an im-

partial hearing as outlined in the provisioos for dueprocess in the lndividuals with Disabilities EducationAct (IDEA, formerly PL94-142) and secrion 504 oftheRehabilitation Act. For some parents, th€ threat oflegal action spurred compromise; in othercases, morethan one hearing was necessary. The outcomcs of irn-paitial hearings *ere not always favorable to the par-ents. Forexample, Martha losl hgt request to havc herdaughter's, Karcn's, work study program continuelhroughout the year b€cause the school lelt Karen wasfunctioning adequately without it. Martha reponedthat Karen was doing well, because Manha had ar-ranged for and financed integnted work and te$e-ational expedences for her daughter.

Eva recalled attending a meeling whcn her son wassbout to cnter public school in \r,hich she inquiredabout an inclusive placement for him. Shewas told bythe interdisciplinary team that inclusive placementsdid not exist, and that i! was unlikely her requestwould bc met. Eventually, she enlisted belp:

Somebody from the preschool gave me th€ num-

Tabl€ 2Summary otstmlegics Used by P?rents lo Pursuc lnclusivc Education

Illustrativc commcntsSliitegyl. Bccame involved as a par€n! member of the Committee

for Special Education (CSE).

2. Sought out key players in the school disltict

3. Pursued l.sat channels

4. Refused school disricas rccommendation for selfcoltained class and:(a) kept chitd out of school

(b) chosc private segregatid ptoaram over public schoolsegregaaed program

5. Agreed to a compromis€ wilh district

"I did all of lhis bccause I krcw 1 needed to know a lotaboul laws and I needed to sct involr/cd and I need€d toknow peoplc tbat werc ab|c ro make decilions-"

"l went to my (CSE) chairplrson who I dcvllop€d a6DDon wilh over lhe course oflhc vears "

"t visired clcmcntarr schools and I finallv found t Principalihat said ves w€ can do il'."

"I w.trr to m€dialion lhre. times with our administntorsbecause w€ want€d to exhausl evcry administradveDrocess availablc to use."

''I nceded lesal hclp ar lhar Point l ju5t couldn t do italone."

''Ard I iust flal out refused, al one point in timc . . andlhat l;d me lo mv imDanial h€aring whicb was a vcryDrormcted hearin8 which lasred over 18 motrths cos mc; uemendous anounl ol moncv, and frustralion."

' The reason why I k€pt him our is becaus€ Ari is Ih! Undofchild cv.n ithe wenl lo lhe special .d seltin8 hcwould do well in lhcrc. He $'ould fil in. He wouldprobably pro8ress. Bui not in the panicular ways fial iwanr him to."

"lt wasn't what we ideally watucd. But it was b€rcr &snthc Board of Education was ofering."

"So here I amjusr in a lurch. So I madc up mv mind lohav. him stav in nrst rmdc. It mv miod the conccss'onwas lo stry i; firsl 8rad.. ' lchild ro rcmain in rcsutareducation by repeating a Smdel

'Ii ia s slort. vefu shon, ol what I wanl for him' but I f'llthar ii was bctler than none at all. '

''ic qoibact into school, I bclievc because ol this aniclc'Thir rniclc came oul on Sundav. Bv lhc ncit dav atwork. lhc Board of Ed ca[.d me up and said we q'ant to

''we noved for scveral nasons' rhat lschoouparE

6. Souahr mcdia a[cn.ion

?. Moved family to a new lown displllcsl beins one ofthem."

142

ber of a child advocacy organization-the person., ri" otes"troot should remain anonymous be'

"ru.. "'tt" "". eo;ng "g"insl lhe preschool So I

"utlef ana Otey assigneC me to a iawyer and wefoughl the syslem.

Afier several alrcmpls al n€gotiadon with th€ districl'Eva's lawyer called an impattial hearing that.eventu-allv lcd to at inclusiYe placement. This story rs repre_senrativc of many of the parents who tned to worliwith the school disFict before going 10 an impartialhcaring.

Arothet parenr commented on the emolional andpolitical complexities of legs.l neSotiations:

You hav€ to be real tough And al the same timeyou have to b€ reai nice. las almost a passiveaggressivc thing. Duritg mediation you have !o bereal nice because you have lo be able to work withthem after that. And you don't want to work withpeople who hale your guis.

This commefl! *flecls a realization by parents tlatrcgardless of lhe oulcome of legal aclion, there wouldbe inevilable future interactions between lhemselvesand the professionals.

One lhird of the parents sought and obtained mediaattention in their quest for inchsive education. In cachcase, journalists writing abolt changcs in educationwere directed to thes€ parcnts by professional organizations or indiriduals advocating for inclusion. Eacha$icle appeerEd ir one of the widely rcad r€gional ornatioDal n€wspapers. Each parent was eager lo cooFerate with the reponer in the hope that communityawarcness would facil;rate their €fforts toward inclu-sive education. For both Effie add Eva, this provedpadially tnrc; they were conractcd immediately by tteschools, although they wcre less lhan satisfied with theplacements ofercd.

IfiplehentinS incluiive education: Making lt worl.Study participants received a great deal of support intheir F)rsuh of inclusion frcm a wide variery of people(e.9., advocates, la{,yers, orher parents). Once con-sensus for plac€rBent i'l ar inc]osive environment hadbeen rcacbed with lhe school district, the list of keyplayers narmwed. Specific school personnel seernedto be rcsponsible for providing initial endorsemcnt ofag€neml educarion placement while others were re_sponsibl€ for .naking the placement work, For exam-ple, it was reponed coosistenrly lhar the prerequisitefor establishing an inclusive placcmen! was securirglhe support ofthc school principal. Ir was rhe principalwno scrvcd aj gatekceper by determininA whcther ornot an inclusive educarion placement wa; going to beesrablished- Without rhc initial suppon an-d approvatof the building principal, inclusion did not occur -

lf we could ger the principal to accept him, ihen

the school district woDld put him into the holneschool. But tbat didnl work or:t because ths prinlcipal \r,ooldn't sign anyhing since hi\job was oDrhe line. He woulJn r give his permisiion. Th;head of the district didn'! wan! to hearabout it. So we were practically b""k t:?;l:l:

At 6rsr the principal at Easr Brook School wasvery supponive and she played a role by sayintshe would take Nina that first kinderganen schso'iyear which was a big step because a lot of princi-pals wouldn't do it.

And I went to see her lprincipal] and it was iusrher at the tirne. And I told her wha! I wanred andthen she said to me "Well, whatdo you wantfromus as a program? How can we help Jose?"

Whereas the building principal was an inilial andinfluenlial powerin permitiing inclusion to hapFen, th€classrcom teacher and/or consultana largely deter-mined the success or failure of the experiencc.

WeU, the first thing the teacher said to tnE was"Ifs fine if he's in this class but I'm not uain€dfor rhis and I have no intention ofgetring lrainedforit either." I wouldjust describe her auitude asnot welcoming for him. And I know rhar rubs ofon lhe other kids.

The only stickler we had was we had problems*ith the teacher. The leacher closed herself offcompletely ro Ari. ft's come down to the last fewweeks ofschool where shc has nolhingal a.ll to dowith Ari €xcept that she is presenr and he ispresent. Shejusl sort of ignores him, like he's aninvisible child.

A tiacher's negative attirude can decac! from aoinclusive educalional experiencc, and a reacher's pos-itive outlook can enhance it.

This was a really astute (eacher. And the firslrhing she said to me was "I betiev€ Timothyshould be it a regular class."

In addition, pare.ts .ecognized the valu€ ofat€acher'sskill, competencc, and educational vision.

Well, the consultant has been grear. She kind ofdoes ev€rylhing. She works with lhe teacher, sheworks with the children, she works wi& the aides,you know what I mean, She's really a very goodcoordinator. And we're lucky to have her becauseotherwise it wouldn't be going lhe way that it'sgoing.

One thing I notced that they lleacher, aide,consultantl all have in common is that they reallybelieve in his capacity to learn and th€y believe inhis intelligence.

t43

Effolts to establish inclusiYe education rcsembled awoven fabric wkh each thread systematically inter_lwining with others to produce a shared outcome'llowever, mere placement in a genelal educationclassroom did not automadcaliy provide a truly inclu-sive experience for the child. Gina, who compromisedwith th; district by agreeing to have her son placed ina general education class rtith younger studenls, re-marked that hc didn't seem to be a full member of the

His desk is placed at the end of the tow. I mean'hc's with olher kids but it's not like he's in lhemiddle. His aide sits with him and he is very de-pendcnt on an aide.

Sandra, whose child attended geoeral educationclasses at an elementary school, quesiioned why theschool did nol fully include her child in all ctasses withhis typical peets, particularly lhe courses in which shekn€w him to cxcel.

A few things he's not ittvolved in He doesn't goto regular phys, ed. He goes to adaprive phys ed'Al liist there was a problem with computers andmusic which hc is very, very good ai. As you see,we have a piano and Jamal is very much into mu_sic.. I sing, and th€re's a lot ofmusic in our house-hold, and I can't believe he can't go to music Andalso compute$ -- he's a wiz at computers So Isaid to lthe program coordinator] "I catr'i believethat thc two areas that he is thriving a!' hc's notable to attend."

Gina, Sandra, and others in this study Biscd peninentoucstions about illogical class placements and educa-tional omcrices. They rccognized that for a gencraleducation placement to be succ€3sful. lhe child mustbe a full member of the class.

Pcrsonll TraDsformationParcnts' Dursuit of inclusive education forth€irchil-

drcn icnde; lo be a prolonaed and challengingjoumeythat for many had persis!.d over lhc cours€ of scveralyears. Study participants shared pe$onal accountsaborrt their quest.

This is an cmotional lopic ior me becatse it was a

soulce of a lot of pain and agony and to tell youthe tnrth this was worse, what the school districlDut me through. was worse than anything I'vcieari with Pa;. And we've been through quitc a

lii *itft f"uf "" every level medicallv-tife andd..fh. Tht." ut" ti-"" that when Paulis quitc sickaod I wonder whafs goitg to bc'

This probably afccted me more than any onettrine in'mv wtrole tife l just am Setting teary bc-c"rrs'e t atttays say it is a shame that I had to

become a betler person because of what is baP-pening with h€r.I hav. cenainly been responsiblefor spr€ading awateness lof inclusion], evenamong my own social group.

One of the most striKng themes to cmergc had lo dowith par€nts' ambilalent acceptance of theit new rolesas advocates- Because the schools did not offer theoption of inclusive education or necessadly supportpirents io their pursuit, parents seemed to feel theyiad little choice but to lcarn how !o advocate for theirchildren. Many ofthe nine parenis did not necrssadlywant to assume the advocacy role that was thnrst upo!them:

I don't want that rolc eifier. Rigbt now I'm de-voling my life to extending myself and leamingaboui the school system and leaming about cdu_cation. Leaming somc points of law. Ieamingwhere to go, how to advocale. I don't want to dothis. lt's not necessary.

Wcll, I lhiDk if I sit down and rhink about it Ihave lo be a little angry becauss !o me there ar€ somany other problcm situations thal come up in lifetha! you have to fight for.

Somelimes it's adoctor, sometimes you have tofisht for medication. To me it is a riSht I shouldn;r- t shouldn't have to fight for thit-il's hisighr.

Anothet oarent expresscd relief when she was Do

lonser lh; sole advocatc fot her child since the con_

sulirnt had assumcd some of tbe responsibility'

The consultalt teacher . . she's tbe ode who'smaldnsit work now And il's aclually nice tohaveaoa" -of th" pressure off me_ I mcan right now'they're fighting for ao aide' not me'

Althoueh psrents discr'lssed lhe ftuskation thcy ex'

".J"*"i ln rrt.i. stusgle to obtain a placcment in!.o..4 .ao"urion, they also dcscribed lhe positivei..*"^f ttu".fot*"ti..s that occurred Parcott develIi.J " ."n." of putpo.e and awarcncss of tleir ownsireneths as a reiult of their advocacy efforis'

I feel good about myself' I definilely do' I feel thati i"u"-rn"a"

"o irnpr"oiorr ot some p€oP]e in the

.do""tional system even though thcy may noli""" ,si""a *i lt t. at thc time But I think I'vemede them slop and think

vo,r r" eoinj agrintt tbe system l nevcr knewI ;ld ;;;" iuna uP ro t'" system l mean ItJurJn'i."v uoo to iou l mcan I want'd to be

ritJ -ii """u ce(ainlv never be adversarialior anythiDg.

These pareris rePorted a plofound comrnilmcn! to

t44

educational equality for their child lhat led them togreater self-und€rslanding. Although anger and fnrs-tration \{er-e !,res€nt at times, these parenb alsolapped into a latcnt strengrh during rheir encounterswith schools.

Discussion and ImplicationsThis study provided some informaiive first-hand ac-

counts of parents who sought inclusive educationalpiacements for rheir children with disabilities. AI_thotlSfi the children discusscd in this investigation var-ied in ages and abilities, rhese parents all shared asimlar perception of why education in a0 inclusivesetting was the mos! appropriate for their children.

Ahhough understanding the perspectives of theseparents may bc helpful in recognizing some of the ex_p€flences and challenges other parents may face whengarn-tng access to i'chrsive education, the genaraliz_ability ofrhese findings may be limiled by severat tac-lors. first, rhc prescnt sludy was bared on the per-spectiv€s oi only nine molhers. Second, ihe r€sultswer€ based solely on inlerview data; no other datawere used to corroborate thc infomatioo as reportedby the panicipants. Third, although follow up conraclswcre made to clarify and verify the information ob-tained., the data were derived primarily from a singleinterview with each ofthe participants. perhaps diff;r_ent themes would have encrged with a larBer sampleand a more diverse data basc.

In this study, parents of childreD with disabilitieswho advocate for inclusion seem to hold a vision fortieir childreD that is inconsistent with society,s views,Their advocacy efforts reflect a commitment to thebelief that all childrcn descrve rhe opponunity ro betull mehbers of society. This includes, bur is not iifii_ited.to, membership within the family, community,neighborhood, and school environmem.

. The par€nts in the prescnt study passionately aniculated a vision for theirchildreo thar reflected a socialjustice pempective. Aithougi the critical issue of basiccivil dghts emerged, a more substa0tive isste that paF

ents ad.dress is one of acccplance and memb€rship.Afler all, what purpose do rights serve if rhey do norrcad_to acceptance, nrembership. and full panicipa_Ion?.In addition to advocating strongly for children,snBit to be included, parenrs acknowledged rhat rheyoeserve lhe freedom ro make decisions regarding theeducation of their children. parenrs in this study rec_ognized that although nor all parents share the saftceducational goals, ali parenls should have an acttveand heaningful role in cducational decisions iflhey sochoose, Because not allfamilies wantorneeddte samernrDgs, par'ents should be the ones to determine io,/lhey panicipa(e in the DrocesrAlthough parentat ri;hts, including participation in

their children's individual education plan, lre pro,tecled by federal legislarion, parents, opinions'andconcems may not be accepted reaaily by school 61r.tricts (Salisbury, 1992; Soodak & Erwin, in pressy, gg.cause differences belween parents and school per;;-nel were not always easily resolved, parents iq 1-1115investigalion were forcea to go outside the school'6irassistancc. fn fact, all but one of the parents ha6'iopursue legal and other channels when larriers Owef-oped..The only parent who did nor pursue assisl6nlgoutside the schools had a child who participated;l-6federally funded projecr on inclusion...The experiences of parenls in rhe presenl study in,drcate that those passionalely commtlted to inclusion

may not await sysrems changc passively. When facedwrlh. roadblocks, parenrs employed various stralegiesto.obtain placements in general educatioo for tf,sirchildren wirh disabihties. Some parents tried ro enlislrhe help of inlluential adminislrators or tried ro b;-come part of the decjsion-making process. Those fail-rng to obrain placements in this way used establishedmechanisms for resolving connicts (i.e., iniriaring dueprocess proceedings). Some parents in this invesliga.lion accepted compromises in the form of part"ti-megeneml education placements or placcments in classeswrth youn8er studenls, Some parents unwilling to ac.cepl less than a fully inclusive placement, refuscd rohave theirchildren a[end public schooland eirher paidtor privare schooling or kept their child out of schoolenlirely. One family rclocated to another rown !o es_:ape conflict. lnteresdngly, one third of the parentsinterviewed tried ro effecr change by alrracling mediaattenllon to the issue of inclusion. Clearly, these par-ents went to extraordinary lengths to achieve whatlh€y thought was bes! for theiI child.

Not only did lhe pursuit of inclusion involve anenorrnous amount offrustration, rime, and energy. butlhe emotional impact this process had on parents de_se es panicular altention. parents were often forcedto assume advocacy rolcs rhey did not want or to ac-quresce to decicions that they considered unfair or jn_appropriare. In either case, this was done at the par-ents' expense in emotional energy and financtal cost.Wlat. then, made these parents engage in such astressiul process despite th€ir admitted reldctance tobecome.advocatesl Akhough rhe prcsent data do nolpermlt dettntttve understanding of the unique charac-tenstics, skills and/or propensiries rhese parents pos-sess that led them to engage is such aciivities, it isnevenheless important to note how lhey are similar ro,as well as diffe.ent frorn. orher parenE who may beequalry passronate aboul their childrens, livcs.

Th€ similariries alnong the parents inrerviewcd areconsrdered first. Each morher had earned at teas! ahrgh school degee and most had completed some col_leg€, ()nly one mother was no! presently married; sndonry one was nol employed outside of lhe horne. per_

l4s

haps education and rtork experience played a role innreDr.ins them for the demands ilnd stresses involvedin advocltingforctrange Given lhar itwas exclusivelvmothers v/ho responded to the call for participation(and were the actors in the stories they !old), it may bethat mothcrs are morc likely than falhe$ to b€comeadvocates. This hypothesis is supported t€ntatively bystatemeDls several fiothers made about their hus-bands' hesitancy to challcnge the decisions of profes-sionals. However, it may be equally important to rec-ognize that two"parent families were r€presenled al_

most exclusively in this study, suggesling that themothers might have been r€ceiving rhe suppor! rheyneeded from husbands and families lo engag€ in thestruggle. ln fact, the one single mother in this studyhadihe help ofher parents, who lived with her and hcrson,

Resulis of this study seem to suggest lhal a strongcommitment to inclusive education crosses ethnic andracial boundaries and that this commitment can lallyanv Darent inlo aclion. This suggeslion scems to be.on,iuty ,o findings of prior rcsearch thal led Harry(1992) lo characterize the panicipation ofminority par-ents in education as indicative of a "paltern ofpassiv-ity" (p. l0!). However, as Harry explains, it may bethat with education and support allparents can assumcactive roles in educational d€cisions

The age and disabilily ofthe child seem to be unim-Donant an determinina if parenls activelv pursue inclu-;ive educalion. In lhis sludy' lhe children wilh disabil-ities ranged in age from 5 to 19 and were ofno panic-ular ran-k in birih order. However, one thi'd of thechildren had no siblings, suggesting lhat parents of onechild may be more lik€ly to be involved aclively intheir child's educarion. Once again, the limiled num-ber of paniciPants (estricts interpreralionsl howevcr'rfre pres.rrr finainss ao suggesl intriEuing areas o[fur-ther sludv-

p"ir'^o.. .i..rrmsran"e plaved a role in determininghow aesiessively parents advocared on lhc children'si.t *tfip.."n* *o." often thrust into advocacy posi-iion" ior tftei. cnilaten perhaps because thev had litlleor no meuningful vote in the educational dccision-;"kl;;-*; Biklen (1e92) suecests rhat parcnts orcnfJre"n w;tfr disatlfities experience anxiety and frus-tration when thev disagree with professional recom-;;;;il;",'h*; limi;d accessibilitv to a

'anee of

ootion". "t" not given meaoingful opPonunity to par'iiii".r"'in a..i=iJ"t, "r are faced with situations thatJJ''noi "".o.rnoa"*

their children Findings in this.*au "t "on.it,.nt

with Biklen's research that sus-

r"-.-,j,rt.i tft" ftt.t.",ion parcnts describe is not abouti"ti""

" "rtifa *i,l

" aisabilitv' bul rather how societv'

""o'i;- o"ni*r"i,* educarional svstem' treats individuals who have disabilities'';;";;;";i' experiences within the currcnr cdu-

*,i.."i "v.,"*,

devcloping pannerships bclween

schools and families appears 10 be a necessary nextsreD. The reco8nition that families are critical to Ih€€d;cadon of young children witn d'sabilities is clearlvreflected in federal legislation (c g., Pan H of the In'dividuals wilh Dsebilities Education Act). Safer andHamillon (1993) explain:

Part H reflects not only a respect for families andwhai lhey know, but aiso an assumption that thefamily plays the key role in thE dev€lopment ofthe young child, and that the rcsponsibility oftheservice system is to support lhat role The needs

of the family ar€ as much a focus oi Part H as arelhe needs oflhe child, and the family is given theauthority to determine wbich services it will ac-cept ard which it *ill not (P. 5)

Researchets and educalors have acknowledged con-sistently the fundamental signilicanc€ of panflershipsi"tween famit;es ara professionals in the education ofinfanls. iorldlers, and preschoolers with disabititiesIBailev- 1987i Bailcv, Mcwiltiam, Winlon' & Simeons-.on- iggzr gro*n, fnurman, & Pearl, l99li TurnbullJ i"-sr - ltg0l lf elemenlarv, middle. and hishschool Dersonnel betlcr understood the significatceand imoLications of working collaboratively wilh par-

enls. D;rcnts miSht feellike they are part ofthe system

in=rcaa ot outtlaers looki$8 in Unfonunalely' as

"ho,rn in thc prescnt

"rudy ' many parcnts ar' forced lo

.""t io*"tr"i .*".""t toices inorder lo be heard l!isborh unfair and unrealisric lo expect parenls to go to

these lensths to cfrect change for their children-'ii "n ito. ,o "t"",. 'nore

supponive and etrective.a*"tionat "nui."n.ents

for children' sehool districts*u"i ."con"n"t t"ir policies reBarding families One

"o.riUiLit" fot changc is to conceptualiz€ schools as

l.tnrnu"iii".-.*tt with a unique coll€ction of s(u-

i.'il.i". i.", """r,*' un6 26m;e;51B1qrs-who all

"""1"1^i."t"f pan in tbe success or failure o[ the

icnool. However, afrording familics consislent oppor',."t' i.t ."""i"E r invotvement ifl their child's ed'

';;;l;;-*ill requ-ke the restructuring of school svs'-,.ii. i"t""t itput ;.."tv meanindulin a schoolsvs-,"-'tt'", ""'fr"lo"*"'t is panners This implies that

*r""it'rr,""rJri"*,nt frtedom and power to make

['iial",iio* *iri' professionals rcsardins educa-

t:JJ".."no and pracrices Hopefullv paretls

-iii""ii""" . u-a "p ro tlc svstem" but ralher

;';;i;;;;; * - 'icclar and varued Pan ortbe

system.

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Anicle Reccivedr March 10. 1994Fiml Acceprance: Ocrober I?. t994Editor in Charge: Diannc L. Fcrauso!