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Disability & Society
ISSN: 0968-7599 (Print) 1360-0508 (Online) Journal homepage: http://www.tandfonline.com/loi/cdso20
Struggles with Time: The careers of parents with
adult sons and daughters with learning disabilities
STUART TODD & JULIA SHEARN
To cite this article: STUART TODD & JULIA SHEARN (1996) Struggles with Time: The careers
of parents with adult sons and daughters with learning disabilities, Disability & Society, 11:3,
379-402, DOI: 10.1080/09687599627679
To link to this article: http://dx.doi.org/10.1080/09687599627679
Published online: 01 Jul 2010.
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Citing articles: 35 View citing articles
D isa bil ity & So cie ty , V ol . 11 , No . 3 , 19 96 , pp . 37 9 ± 4 0 1
Struggles with Time: the careers of
parents with adult sons and
daughters with learning disabilities
ST UART TODD AN D JULIA SHEARN
W els h C ent re fo r L ea rni ng D isa b ilit iesÐ A ppl ied R e sea rch Un it, Un iv er sity o f W al es
Colle ge of M ed icine, M eridia n Co urt, North Road, C ardiff, CF4, 3BL , U K
ABS T RA C T T he expe rie nces of p are nts with a dult offspring with lear ning disability and
the meanings th eir p arent al caree rs ha ve fo r them, has b een the su bje ct of v ery l ittl e
em pirica l research. In this pa per we descr ibe an d ex am ine some o f the features that ga ve
shape an d mean ing to the day to d ay liv es of par ents of 3 3 co-resident adults with le arning
disabilities. T heir accounts o f the ir situation s rev ealed that `t ime’ wa s a factor of some
im portance. P ar ticipan ts suggeste d tha t soc ialisation into t he parental role w as o ne th at
continued ov er the life co urse. In addition, they a lso felt that the s ervice s they re ceived were
ba sed upon an in ad equ at e and too narrow an un der sta nding of how the y exp erienced
`tim e’ . T he da ta revea l tha t both `over tim e’ an d `in time’, parents struggl ed to maintain
a set o f asp irations for a t ypical life. The data sh ow that fo r ma ny parents there w as a slow
accom moda tion to the co nst raints of service prov isio n an d, as a result, their needs for service
support became less extensive.
In tro du ction
It is w ide ly recog nised that b ecoming a p are nt of a child w ith le arn ing disabilitie s
im p lies a n en d uri ng r es po ns ibi lity sp an ni ng s eve ral de ca de s ( M ey ers et al., 1 985;
Todd et al. , 199 3) . C on sid er ing t he t im es cale in vo lve d, a fe at ure th at di stin g uis he s
it fr om ot he r fo rm s o f fa m ily c ar eg ivin g (S elt ze r & K ra u ss , 1 98 9) , a s oc iol o gic al
un de rstand ing of its tem po ral nature should be of n o little im portanc e. Y et a
resea rch -based persp ective o f parenting ove r the life co urse, and th e so cial costs and
rewar ds a ssocia ted with it is under-deve lop ed ( Seltze r et a l., 1991; Turn bull et al.,
1986) . Rather, the prevale nt re search foci have b een two imp ort an t, bu t extreme
tim e periods of the p are nt al caree r: the in itia l tra ns itio n to th e pa rental role (Booth,
1978; Blacher, 1984) and the early years of adjustment (Beckman, 1983; Gallagher
et a l., 1983); and th e coup ling of p are nts’ heightened sense o f impending in capacity
an d/or death w ith t he lack of arra ngem en ts which exist for t he fu ture care needs of
th eir d isa ble d off sp rin g ( Ba yl ey, 19 73 ; Gr an t, 19 86) . Alt ho ug h im po rta nt c onc er ns ,
096 8-7 599/96/ 030379- 23 $6.00 Ó19 96 J ournals O xfo rd Lt d
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380 S. Tod d & J. Shea rn
it is clear that this te mp ora l partia lity pr ecludes an un de rstand ing of the brea dth o f
paren ts’ e xpe rie nc es. Contribu tin g to this te mp oral bias m ay be the dogg ed
stereotype o f people with learn in g disabilities as `et ern al c hild ren’ ( Wolfe ns berger ,
1972) , an d its rec iprocal notio ns o f `perpe tual pa ren ts’ (Ro witz, 1988) an d `cons tan t
bu rden’ (Voys ey, 1 976) that conve y an impre ssion o f the parental expe rience as
un ch ang ing. In t he a bsenc e of d etaile d resea rch , the se s hould b e viewed as con ferred
properties, lens es through which pa rents’ n eeds are de® n ed, ide nti® e d an d
re sp on de d to by ot he rs ( M cK ni ght , 1 981 ).
So m e wr iter s, ho w ev er , h ave s ug ge ste d th at co mi ng to te rm s w ith th e m ean in g
an d im plication s of their o ffs pring’s disability c an not be co n® ned to the e arly years
of pare nting since ove r the life c ou rse , paren ts would en counter a num be r of nove l
situat ion s and pro blems tha t will require n ew coping st rategies to be fou nd (Farber,
19 75 ; W ik ler , 1 98 1 ). T hu s, a lth o ugh be co m in g a p ar en t of a c hil d w ith l ea rn in g
disabilities is a f orm o f `ide ntity trans forma tio n’ ( Str auss, 1 959 ), it is likely that it
in vo lve s a se ries of in cr em en ta l c ha ng es , o r of `c om in g to n ew t er ms ’ , w ith
co ncom itant re-ev alu atio ns and revisio ns as pare nt s cha rt th e direction of the ir live s
ov er a life tim e . D e sp ite th e sa lie nce o f t he se ar gu m en ts, th er e exis t few s tu die s tha t
provide insight into the im pact th at such adjus tment s ha ve u po n paren ts . Birenbaum
(1 97 0) s ug ge st s tha t p are n ts’ n or m ali sin g s tra te gie s, d es ign e d to d e¯ e ct t he s tig m a
po ten tial of learning d isa bility, as we ll as serving to legitim ate the ir ow n claim s to the
rig hts a nd o bli gat io ns of ty pi cal p are nt ho od (V o yse y, 1 97 5), w o uld b ec om e m o re
tax in g and less re adily legitimated a s childre n with learning d isa bilities bec om e
ad ults. Beco ming the paren t of an ad ult w ith le arn ing disabilities m ay in vo lve f acing
an d dealin g with new prob lem s an d there is a n eed for re searc h to exam ine how
pa re nts co pe w ith a po te nt iall y in c rea sin g n on -n or m ativ e li fes ty le .
In this pape r we e xam in e wh at be co mes of paren ts of children with le arn ing
disabilities a s the years u nfo ld, and seek to c ap ture some o f the dif® c ulties, dile mmas
an d rewards they enc ou nte r. T he pape r utilise s biogr aph ic al narra tiv es (s ee, for
exam ple , Becke r, 196 6; B ogdan & Taylor, 197 0; F araday & Plu mmer, 1979)
elicited from a gr ou p of paren ts to reve al th eir o wn p erspectives of how their lives
have worked ou t, and how th eir accumu lated experien ce s in ¯ uence th eir view s of
their futu res . We adopt this p os itio n on the b asis that th e mean ing s so cial actors
att ribute to an y sta ge o f any career c annot b e fully grasp ed u nless w e un de rst and
ho w they de® ne that sta ge in re lation to th eir in terpre ted pasts and a nticip ate d
futures (H ugh es , 1958; Bo gda n & Taylo r, 197 0; Be yn on, 1985; Charm az , 1 987;
Corbin & Strau ss, 1988; S chmid & J ones, 1 991). C onsequently, o ur focu s is u po n
paren ts’ experie nces of their ca reers, that is with the su bje ctive dimens ion that forms
the ª ¼ m oving pe rsp ective in w hich th e pe rso n views his (sic ) life a s a w hole an d the
things that happ en t o himº (Hughes, 158, p. 6 3).
Time, Par enting an d the Person
If res ea rc h is t o gra sp th e bio gr ap hic a l s ign i® ca nc e of pa ren ti ng , it w ou ld b e abs ur d
to im a gin e th at on e re sea rc h stu d y w il l c ap tu re th e co m ple xit y an d dy na m ic na tu re
of pare nts’ lives in their e ntirety. In this p ap er, w e exam ine how paren ts deal w ith
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St ru gg le s w ith T im e 381
the implicati ons bein g a pa rent of a person w ith le arnin g dis abilitie s has for the ways
this role co mes to a lter their expe cta tions o f their own f utu res and , in p articular ,
in¯ uen ces the ir aspiratio ns to hav e a life tha t is no t contin ge nt u pon the p are nt al
identity. T his im plies a need not only to locate the n atu re o f the pre se nt p arental
caree r stage in relatio n to its pa st and fu ture st age s, bu t als o im po rtant to e xam ine
the cha nging inte r-relat ion sh ips b etween paren tin g an d other life purs uits (Be nn et,
1985; D in gw all, 1977 ; Spenc e & Lo nner, 19 78). Sin ce paren ts , in gene ral, are
thoug ht to have a view of th eir futu re th at involv es in creas ed particip atio n in t he
world beyo nd p are nt ing ( Ha ges tad, 1986) and also since Birenb au m (197 0)
de scribe s th at p arents’ norm alisin g strategies re¯ ec t the ir o wn aspirations to a
no rm al life, it is of som e in terest to u nderstan d what bec om es o f those aspirations
over time .
A stud y of th e caree rs of p are nts, therefore, ne eds to integrat e par ental
experien ces with in their bio graphical con texts an d within th e per spe ctive of the
rounded p er son str ugg lin g to ® n d ways o f expressing m ultiple comp on ents of their
self-identities. In illum inating th is dim ension of parents ’ lives , this paper seeks to
overc om e a centra l tendency in t he family research lit eratu re for rese arc he rs and
services to be pre- occup ied with th e `paren t’ rat he r tha n th e `person’ be hin d th e
pa re nta l m ask (M ac C or ma ck , 19 78) . W e h op e thi s sh ifts a tt en tio n be yo nd the
im media cy of fam ily relat ionsh ips t ow ard s pa ren ts ’ e veryd ay relat ion sh ips w ith the
world beyond th e fam ily . W e rec ognise that suc h a re search stra teg y re nd ers the
pe rsp ective s of p eo ple with le arn ing dis ab ility in vis ible and, th erefo re, c on trib utes to
an other bias in th e fam ily life res earch literatu re. W e have, however, in anoth er
paper fro m th e study (Todd & S he arn , un der rev iew ) de scribed th e in ¯ uen ce fam ily
relationships have up on th e se lf-identities of a du lts w ith le arn ing disabilities.
A m iss ing to pic in mu ch o f the family literat ure in this ® e ld ha s been th e ways
paren ts m anage m ultiple inv olv em en ts, as w ell as the salie nce they acc ord to thos e
involvem en ts. As in o ther ex am ples of s ociolo gical re searc h on a ran ge o f car ee rs, the
focus has been on the discrete na tu re of the s ingular career at th e expen se o f ho w
different care er lin es a re as sim ilated a nd m an aged by soc ial ac tors. As A tkins on &
Delamo nt (1 985, p. 311 ) illu st rate, in their rev iew of r ese arc h on the o cc upatio na l
so cialisa tion of te achers, the socialisin g in stitution is often treat ed `¼ as if it w ere o ne
of Go ff ma n’ s (1 96 8) arc h ety pa l ª tot al in sti tu tio ns º ’ , ig n ori ng th e in ¯ ue nc e of
teach ers ’ pe rso na l life -c are ers an d in terests. A lth ou gh it is re cognised th at
care- giving c an le ad to `role c aptivity’ (Skaff & Pearlin , 1992) and diminis hed
op po rtu nities for particip ation in wider soc ial d om ain s, it sho uld be emphasis ed that
this highligh ts a tendenc y towards role restriction rath er than being the on ly role
ca re rs h av e. Pa ren ti ng ma y b e le ss an all e nc om p as sin g rol e an d m o re sim il ar i n k in d
to C os er’ s (1 974 ) c on ce pt o f th e `g re ed y i ns titu tio n’ , t ha t is o ne wh ich t yp ica lly :
¼ de sire s to devo ur the en tire person an d resen ts th e outsid e activit ies of its
mem bers. ¼ T hey exe rt pres sur e to w ea ken tie s the y m ay h ave with o the r
instit utions or persons , wh ich m ake claim s con¯ icting wit h their o wn
demands. (Parry, 1990, p. 418.)
To obtain a ® n e grain ed u nd ers tan ding o f the paren tal c are er this p aper lo ok s at
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382 S. Tod d & J. Shea rn
pa re nti ng in re lat ion to tw o te mp or al dim e ns ion s. It ad dre ss es the w ay s t im e s hap e s
individu al biograp hie s an d ho w it c uts across the m ore or less imm ediate `present’,
co nnecting and s tru ctu rin g th e va riou s c om po nents o f pe oples’ identities t hat
provide a sense o f se lf (Z eru bavel, 1981; Corb in & Strau ss, 198 8). Zerubavel (1981,
19 87 ) arg u es t hat s in ce id en tit y is a c om po si te of d iff ere nt s oc ial id e ntit ie s, tim e i s
lik ely to be an im porta nt e lem en t of th eir segregatio n, an d where the re m ay be
fo rm al a nd i nf orm a l r ul es c on tro llin g t he w ay tim e c an b e dis tr ib ute d , ® lle d an d
cla ssi® e d. C on seque ntly, th is raises the t ask o f ide ntifyin g th e rules go ve rning t he
us e of t ime, how they are e nfo rced and b y whom as cent ral issue s. T hrough such a
fra mewo rk , ind ividu als ’ lives can be see n as conne cte dto the wider social o rder in the
way that th e choic es an d c onstra ints op en to them ar e neve r ent irely of their ow n
makin g (B ogdan & T aylor, 1 970; F araday & Plum mer, 1979).
There exists little em p irical data regard ing the pro ce sse s thr ou gh w hich the lives
of pa re nts o f pe op le w it h le a rn ing di sa bil itie s p as s an d w ha t ef fec t t hes e p ro ce ss es
have u po n th em . Se ltzer & K rauss (1989) ® nd h igh leve ls of we ll-b ein g in ma ny
paren ts of adults with learn ing disa bilities. They argu e that pa ren ts com e to ® nally
accep t the me aning o f learning d isabilit y over the life co urs e. How ever, th ey d o no t
de sc ribe t he p ro ce ss es p ar en ts go thr ou gh or ho w b ei ng a p ar en t at th is t im e in th eir
live s is consiste nt with the ir current o r even pas t aspirations . Gran t (19 86) ® nds that
many w id owed p arents c om e to ® nd t hat con tinuin g in th e paren tal ro le offsets the
pe rce ive d pote ntial lo neliness that would re sult fro m their releas e. H owever, sin ce
the experien ce o f widowhood and old -age n eed not imply a lac k of meaningful s ocial
roles (Macra e, 1990), it is imp ortan t to cons ide r wh ether pare nts’ positiv e
de ® n itio ns are a co ns equen ce of previo us ad justm ents. In this paper, we exam ine the
exten t to w hic h past decis ion s an d ev ents may have b rough t paren ts to hold
particular views of their pa rental role at this period in th eir c are ers.
M et ho d
The m aterial for this pa pe r come s fro m a w id er focu sed stu dy w hich s ought t o
de ve lo p a so cio lo gic al ac co un t o f fa m ily lif e g rou n de d i n th e ex pe rie nc es an d
pe rs pe cti ve s o f fam il y me m be rs . T he s tud y , i ts me th od s an d the or et ica l f ra me w ork ,
drew u pon a sym bolic inte rac tionis t perspect ive (Blu me r, 1969) and adopt ed a
gro u nd ed th eor y ap pr oa ch (G la ser & S tra us s, 19 67) a s th e pr im ary m ea ns o f
co lle ct ing a nd a na lys in g da ta. T he se a pp ro ac he s w er e c on si de red i m po rta nt si nc e
they are w ell suited to illu minating the su bje ctive expe riences of soc ial a cto rs,
allo w in g a f ull an d de tai led e xp lo rat io n o f the ir live s wh ile m in im is in g t he in ¯ u en ce
of th e res e arc he rs ’ c on ce pt ion s on d at a c oll ec tio n (B lu m er, 1 969 ; H am m e rsle y &
At kin so n, 1983) . A palp able bene® t of this a pp roach w as th at th e iss ue of tim e did
no t ® gure in the formative s tag es of the re search, bu t was inc orp ora ted as a
co nsequ ence of the repeate d an d fr equent re ferences to things t em po ral in pare nts’
accou nt s of their lives, su ch as c loc ks an d sched ule s and how tim e wa s exp erienced
as a c onstra ining reality.
Data fo r the s tud y we re ob tained between January 1993 an d M arc h 1994 u sin g
a series of in-depth semi- str uctured in te rvie ws with parents of 3 3 adults w ith
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St ru gg le s w ith T im e 383
lea rning d isabilit ie s who w ere livin g in the paren tal hom e in tw o soc ial services
distric ts . The pa ren ts in this study , therefore, cons isted only o f th ose paren ts whose
ad ult o ffs pring continu ed to live in the p arental home . Th e ages of adult off spring
with le arn ing dis abilities ranged from be tween 17 and 44 years, and for p are nts
be tween 4 3 and 75 years. The mo st com mo n age arra ng em en t (33%) w ere p are nts
age d over 6 5 living w ith a n ad ult o ffs pring ag ed o ver 30. T hirtee n of those
in te rvie w ed w ere s ing le ca re rs, tw o of w h om w e re fat he rs . Se v en of th e f am ilie s als o
had other o ffspring living at ho me , and in an oth er tw o ca ses, mothers w ere also
caring for an imp aire d sp ou se. Altho ugh the m ajorit y of ad ult offsprin g (58 % ) were
categ orised a s ha vin g low levels o f depen de ncy nee ds , as de ter mined by th e Degree
of D ep end e ncy R ati ng Sc al e (C ad d ell & W o od s, 1 98 4), t he sp ec tru m o f r ep ort ed
de pendenc y lev els were repr ese nted in th e stu dy .
F am ilie s we re in ter vie w ed on se ve ral oc ca si on s, typ ic ally in vo lv in g f ou r v isi ts t o
th e fam il y ho m e, las ti ng ap p ro xim a te ly 2 ho ur s ea ch . A lt ho u gh th e int er vie w s we re
au dio tap ed , the resear ch ers kept a set of n otes th rough ou t the interv iew . Data w ere
an alysed a nd re¯ ec ted u po n throu gho ut the c ou rse o f data collec tion. Theo retica l
an d perso nal m emos wer e also maintained by the au thors to help elaborate the
on going sh ape of the idea s of t he s tud y as sugge ste d by oth ers (H am mersley &
At kin so n, 19 83). F inally, ou r un de rstand ing of the lives o f paren ts base d upon o ur
an aly sis o f dat a wa s au gm en te d by vi sits t o a nu mb er o f p are n ts’ g rou p s b ef or e o u r
® nal rep orting of d ata.
Find ings
Th e T empor al E xtr emes
There has be en s uf® cient written ab out the sho ck o f becom in g a pa rent of a child
w ith lea rni ng dis ab ilit ies (B oo th, 19 78; B lac he r, 1 984 ) t o w ar ran t lim i ted di sc uss ion
of it in this paper. H owever, that pa ren ts re co llectio ns st ill ev oked a m ark ed
em otion al re sponse su gge sted th at its signi® cance was still be ing wrestled w ith in the
prese nt. It w as unq uestio nable that the dis covery that th eir c hild ha d a le arnin g
disability was a m ajor turnin g po int in their live s, dictating many of th eir past ,
pr es en t a n d ant ic ipa te d ex pe rie n ces . It wa s a for m o f `b io gra ph ic al d isr up tio n ’ ,
(B ury, 1982) from w hen ce a new an d un an tic ipated life be gan its jo urn ey. However,
th eir in itia l so cia lisa tio n in to th eir ro le s was n ot a typ e of co nv er sio n co mp le te w ith
a ® xed s et of valu es or ideas ab ou t the future. As we d escribe be low , parents ’
experien ces of th eir c are ers were expe riences in w hich th eir views o f the mselves,
their re lation ships w ith o th ers and their exp ectations were regularly b ein g red e® ned.
The p arenta l caree r involv ed m aking a n um be r of in cre mental chan ges over se veral
years , its me an ing was sub jec t to re- eva luatio n an d red e® n ition, an d its lo ng -term
im plication s was pr ogressively re vealed. Parents h ad r ecogn ise d that th eir
respo nsibilitie s wo uld be of a long-term natu re, b ut th e precis e im plication of t his
was not clear wh en their offspring w ere y ou nger. A s the follo wing comme nt from
on e m oth er sugg ests ot her personal inte res ts are su rre nd ere d over the years ,
particularly when paren ts re co gn ise that the prosp ects of relin qu ish ing their p are nt al
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384 S. Tod d & J. Shea rn
ro les are lim i ted . An o the r pa rtic u lar f eat ure o f pa ren tin g a t th is pe rio d re ve ale d in
this co mm ent was not on ly the considerab le time period they h ad ca rrie d out th is
role but also t he p erc eived reach of years t hat lay ah ea d:
In the begin nin g yo u kn ow that you’ re go ing to be responsible for th e res t
of y ou r life in on e way or ano ther, b ut you never really k new in w hat way.
It’ s like yo u just roll up yo ur sleeves and ge t stu ck in . But you do kin d of
giv e u p yo u r f ut ure a litt le b it e ver yd ay . I’ v e al w ays t ho ug h t t ha t D i an e
sh ould leave h om e som etim e. But it’ s go t to b e th e righ t place . But th en
ag ain i t’ s n eve r g oin g to c om e ab ou t. Y ou s ee it’ s all r es ettl em en t n ow .
There’ s no thing r eally av ailable for parent s. And I th ink she ’ s too set tled
he re n ow a ny wa y. It just loo ks as though I’ ve got her for t he rest of m y life .
It is also w idely u nders too d th at older par en ts come to experie nce heigh ten ed s tre ss
as a c on seq ue nce of th eir in ab ilit y to e nd t heir par en tal resp on sibilities w ith in the
remaind er o f the n atural tim e lef t availab le to them . For old er parents , the p rospe ct
of death was an issue they had to contend with , while few had any de ® nite
arran gem e nts f or th e fu tur e care of their ad ult offspring . Altho ugh paren ts could no t
ign o re the im p lic atio ns of th e `n ea rin g n e arn es s’ ( Le w is & W ei gar t, 198 1, p . 4 35 ) o f
de at h, th er e w as li ttle se ns e th at t his in d uc ed a sta te o f `tim e p an ic ’ f or m o st o f th em ,
an d m a ny st ill h ad m or e c on st ruc tiv e u n de rst an din gs o f w hat `av aila b le tim e’ m ea nt
for th em in te rm s of other life go als an d pur suits. Th us , pare nts had far fro m given
up living. Furth er mo re, since the end of their lives cou ld ne ver be known with any
de gre e of certa inty, the perce ive d span of availab le tim e w as m alle ab le. P are nts
co ped with the uncertainty of the future by plac ing it at the `b ack of their mind s’ ,
a process facilitated b y the pressing n ature o f the presen t. L ike B ec ker et al. ’ s
(1 96 1) m ed ic al stu de nt s, pa ren ts ’ ti m e p er sp ec tive s we re pr ed om in an tly s ho rt- te rm
an d concern ed m ore with `ge ttin g th rou gh ’ the p resen t tha n po nd ering u pon the
future:
W e d on ’ t ha ve an y lo ng te rm pla n s fo r Fio n a, e ve n th e im m ed iat e fu tu re
isn ’ t that clear. Wh at s ervice s will she hav e in a few years time, wh at w ill
sh e be doin g with hers elf durin g th e da y, durin g th e nig hts? You neve r
re ally lo ok fo rw ard , y ou’ r e to o bu sy wo nd erin g wh at he lp yo u m igh t h ave ,
w hat re s pit e w e’ ll g et s o w e m ig ht g et ou t. A ny wa y, th os e q ue st ion s a re
more p ressing to u s tha n w here sh e is go in g to liv e. I c ouldn ’ t cope if I
stopp ed an d th ou gh t about th e fu tur e. I thin k we jus t live fo r the mom ent.
It’ s as i f yo u ju st pl ay it by ea r fro m d ay t o d ay.
Ge tting Thro ugh: the no rmalis ing y ears
This n otion o f the imp rovised natu re of parentin g wa s a fe atu re that m arke d the
en tire pare nta l caree r. Pa rents r eca lled starting from a p os ition of relative ignorance
an d un certainty, co nfessing that initially th ey k ne w ve ry little a bo ut p eople w ith
lea rning d isa bilitie s:
We had to learn to adap t to a s ituatio n that we’d never been in be fore. In
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St ru gg le s w ith T im e 385
all o ur time we’d ne ver com e fa ce to face w ith `m en tal h andicap’. I had
be en on lo ts o f c hild ca re co urs es b ut I h adn ’ t m et `m enta l h and ica p’ u nt il
it h ap pe ned t o P ete r. I d on’ t re co llec t in a ll m y d ays ,Ð sc hoo l,Ð w or k, I
do n ’ t re co lle ct an yo ne , k no w ing a nyo n e w it h a m en ta l h an di cap . It wa sn ’ t
really u ntil he start ed scho ol that we m et o ther p arents. Bu t even th en w e
ne ver had a ny idea of w hat life wa s go ing to be like. We just took it as it
came . I can re m em ber peo ple telling u s that our lives w ere going to be
differ ent, that we we re not go ing to be a no rm al family. B ut lo ok ing b ack
I did n’t lo ok at it tha t way. We had t wo o the r childr en to deal with as we ll,
an d w e w er e de te rm in ed no t to l et t he m s uff er . S o I s up po se you lo ok
ahead a little, but nev er too far.
M ost parents no ted the y had c op ed as best they c ould to le ad as normal a life as
po ssible . Th ey w ere pro ud they had m an aged to survive many of the rigou rs o f
pa re nti ng de sp ite th e re lati ve la ck of fo rm al su pp or t t hat t he y h ad re ce ive d , su pp o rt
th ey p e rce ive d t o b e m or e lib e ral ly a va ilab le to y o un ge r pa re nt s to da y. M a ny pa re nts
recognis ed tha t the tim e in vestm en t in b ein g a pare nt d uring the in itial ye ars of
pa re nt in g, a lth o ug h m o re e xt re m e, w as sim i lar in kin d f or all pa ren ts , a nd in
particular fo r mothers:
It w as co mpletely o ut sid e of ou r experien ce. I don ’ t think an yo ne can know
un les s th ey ’ ve b een t hro ugh i t th em sel ves . Bu t w e c arri ed on a s b est w e
co uld , an d I do n’ t thin k ou r lives w ere t hat m uch different f rom o the r
pe ople with y ou ng k ids. W hen yo ur k ids are yo un ger you expect to b e tie d
to th em . A ny y ou ng ch ild yo u’ ve g ot to lo ok aft er. Y ou ca n’ t lea ve a ch ild
alo ne w hen its 4 or 5 , or even 1 0 or 1 1. B ut yo u ex pe ct by the time t hey’ re
30 th at yo u’ ll h ave the free dom of the world. T o do the th ing s yo u wa nt to
do witho ut thin kin g.
Al th ou gh pr ou d of th eir ac co m plis hm e nt s, p ar en ts als o re cog nis ed t hat it m ay h ave
be en at some p erson al cost to their n on -disab led offspring and many had regrets th at
they m ay not have alwa ys been a s attentive t o the m as they would like to hav e be en.
As a c onseq uence, ma ny pare nts n ote d th at they no w did no t wish to rely up on their
other a du lt offsp rin g fo r he lp w ith e veryd ay task s (see, fo r exam ple, Todd & S hearn ,
19 96 ). Su ch at tit ud es re ve al t he ir att ac hm e nt t o th e no rm a tiv e n at u re o f fa m ily
relationships, for ex am ple in their de sire s for `non-interfering involvem ent’ (M an cini
& B lie szn er, 1987) t hat c haracterise r elatio nships with ad ult offspring. An oth er
exam ple w as th eir e age rness to ful® l th e normative obligat io ns of gran dp are nthood
(M o rga n , 19 82 ). It wa s n ot un us ua l fo r s om e p a ren ts to be car in g f or g ran d ch ild re n
while their non-d isable d offspring or their sp ou ses wor ked. Th us , parents ten de d to
feel that their offsprin g no w had a lif e of their own and, alt ho ugh a sm all n um be r of
paren ts reported that one o f their off spr ing w ou ld ca re for the ir dis abled siblin g on
their deaths, th ey w ere kee n no t to let them as sum e this ro le until it was no lo nger
avoid able. H ow ever, w hile their views of th eir relationsh ips with the ir no n- dis abled
offsp ring had d evelo ped in no rm ativ e ways , the ir vie ws a bo ut th eir d isable d ad ult
offsp ring sho wed th at a point of fro zen anima tion had been en co untered so me tim e
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386 S. Tod d & J. Shea rn
in in fancy or ad ole scence. T he task s of phys ical car e we re seen b y so me as an
exten sio n of infa nt care , while o ther tasks w ere seen as a p rotractio n of the
ad ol es ce nt y ea rs. N on e o f th e ir d isa ble d ad ult of fsp rin g we re vie we d u n am bi gu ou sl y
as a du lts and their careers lac ked many n otable miles ton es a nd , in particular, their
di sab led of fsp rin g ex pe rie nc ed l im ite d s oc ial p art ici pa tio n ou ts ide of th e p are nt al
ho me. One wido we d moth er s um ma rised h er re lation ships w ith her adu lt offsprin g
in the fo llo win g w ay:
Its like be ing t he s ingle pa ren t o f tw o only c hild ren . A s fa r as I’ m c on cern ed
I did n’ t fe el th at ’ til th ey we re in t heir t een s. G ary w as go ing a rou nd w ith
his m ate s an d girls. Jo e wasn ’ t doing that . You can try as h ard as y ou w an t
no t to m ak e th e difference c ount fo r much, bu t re ally you can ’ t keep it
go ing fo re ver . I th ink ot he r pe op le for ce it on yo u t hat yo u ca n’ t. H e’ s n ot
allo w ed in the loca l pub by himself . He ’ s so frien dly that h e breaks int o
other people ’ s conve rsations and wanting to sh ake hands. He wan de rs
aro und the ho us e, watc hes the tele . Th e only f rien d that h e vis its is the
ch ap a cro ss t he road , a fr ien d of min e. G ary ’ s ju st p opped in now, a nd
po pp ed b ack out again . He’ s go ne o ut in his car. He’ s go ne o ut to enjoy
him s elf fo r th e n igh t. J oe can ’ t d o t ha t. T he re ’ s n ob od y c om in g t o th e d oo r
fo r h im . So h e’ s h ere w ith m e m o st of the t im e, an d th at’ s a lo ng ti m e f or
him a nd m e.
Ad olesc ence wa s als o taken a s one of th e major turn ing points in the p are ntal ca ree r
where parents felt that their normalising s trategies w ere be comin g les s suc cessf ul
an d wh en th e ch ara cter of own lives b egan to d ep art signi® c an tly from th ose of their
pe er s. T h e co mm e nt be lo w rev ea ls tha t the liv es of pa re nt s a nd th eir ad u lt o ff sp rin g
w ere eq ua lly lim it ed in te rm s o f th e op p ort un ity fo r so ci al p art ic ipa tio n o u tsid e o f
th e fa m ily h om e :
We used to be mo re like a no rm al fam ily until he b ecame an ad ole scent ,
that’ s w hen the similarities be tw een us an d oth er paren ts stop ped. Yo u
wake up to it w hen you realise t hat desp ite o ur b es t efforts to treat Debb ie
as any other child of mine¼ well the realisation d aw ns on you that it isn’t
in your p ower to do tha t. Th ere have bee n some pain ful m om ents. Y ou see
I th in k yo u k eep all s ort s o f t hin gs bur ie d, n ot ju st `m e nta l ha nd ica p ’ . E ve ry
so o fte n so me lit tle t hin g w ou ld tri gge r u s o ff. M ay be w e’ d o ve rh ea rd
so me body m ak e a co mm ent ab ou t De bbie, o r William ’ s co me hom e in
tears beca use he’ d b ee n tau nt ed about having a han dicap pe d sis ter. And
so me tim es w e’ d wonder about our ow n lives t oo. A lot of o ur friends are
gettin g up a nd pleasing the ms elves. S o I thin k ou r lives used to b e normal
bu t only up to a po int. Its not no rm al now. I was 2 4 when Debbie wa s
bo rn, I’ m 47 no w. I thin k I should’ ve done m ore with my life. You expect
w hen you r ch ild ren gro w u p t hat you ’ ll b e a ble to s tart d oi ng th e th ing s yo u
want to. I bet you (resear cher) d o! B ut as for me I’ m still in the sam e
po sit ion .
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St ru gg le s w ith T im e 387
Time Bound, Crushed and Stolen
While most p are nts recognised that their paren tal t asks ha d not altered m uc h in
na ture from e ither the child ho od or adolesc ent years o f their o ffsprin g, t he m ea nin gs
such ta sk s had fo r them n ow were n o lo nge r co mpara ble. Consistent with their
earlie r adoption of a s trategy to c onstruct a v ersion of ty pic al family life, pare nts
co ntinued to em brace a c om parative p erspe ctive of the ir age peers to de® ne th eir
sit ua tio n , a s re ve al ed in th eir us e o f a `co ntr as tiv e r he to ric ’ ( H arg re av es , 1 98 1).
Compar isons to no rm ativ e life cy cle de velop me nt as de® n ed by age mean t that tim e
em er ged a s a fac tor of im portanc e. Pa ren ts felt th at the tasks an d res ponsibilit ies
governing th eir lives were sharply at odds with their understandin g of th e live s of
other p arent s. W hile the gender base d division of la bo ur c ontinues t o op erate
throu gh out the liv es of women (Cliff, 1993), it is typ ically as sume d tha t the further
aw ay m others m ove fr om th e ch ild rearin g years, the gre ate r will be the ir latitu de to
make judgem en ts abou t their use of time (Re xro at & Shee hnan, 1 987). P arents
de scribe d the ext ent to w hic h their lives had becom e in creas ingly discrepant with the
typ ical pa rental career, as show n in th e following account o f on e moth er:
Re ally it ’ s jus t ha ving t he fr eed om th at e very bo dy t ake s fo r g ran ted . Our
fre e tim e is from the time you clock off w hen Ma rtha is in b ed until you
st art aga in th e n ext da y. W e ’ d l ov e t o h ave a n or m al lif e jus t lik e e ve ryb o dy
els e. P eople say life be gin s at fo rty, but at ® fty we ’ re still w aiting for ours
to s tart. Our m ovements are alw ays res tric ted, but fo r other p eople they
can sta rt living the ir life again , doing the t hin gs they d id w he n the y were
younger. Their child ren have grow n up an d they can go off when th ey
ple a se w it ho ut g iv in g an y n ot ic e.
Without exception , all parents in the study report ed that `time ’ w as a m ajo r
preoccupation and that bein g a parent of an ad ult with le arn ing dif® c ult ies
co ntinued to in volve ju ggling tem po ral re sourc es to the dictat es of `clock time’ . They
had to confront daily issues o f how time w as to be used, how it wa s to be divid ed
an d accordin g to what ru les. A ® xation with the cloc k was nea tly capture d by one
moth er:
M y life r evo lve s aroun d th e clo ck, on a time limit. It’ s n ot so bad , bu t
so me tim es your life is s pent in a coco on o f a cou ple of hours a t a tim e. Life
just se em s governed by th e clock. W he n I’ m o ut I’m always lo oking at m y
w atc h w on de rin g h ow m uc h ti m e I’ v e go t le ft.
Paren ts frequen tly s poke of th e dif ® cultie s the y enc ou ntered in `® ttin g ev erything in ’
an d of h aving to const ruc t rigid schedules to get w ha t ne eded to be ac co mp lished
do ne. They ex perien ce d ten sio ns in dividing available tim e betw een parental work ,
do mestic work an d self dire cted activities, the latter tw o being u ncom fortably ® tte d
into the tim es th eir o ffs pring w ere in da y centre s, since pare nts were aw are the ir
du ties ext ended into the eve nin g:
When you s tart looking aro un d to see what you can d o, well when y ou ta ke
ou t the trav ell ing time, that’ s an hour go ne b efore y ou start. So all in all
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388 S. Tod d & J. Shea rn
you have abou t thre e ho urs to yours elf to cho ose the things yo u wa nt to d o.
Then yo u ha ve to rem ember th at yo u’v e still go t to ® t in t he housew ork ,
the cleaning a nd d rying the bloody clothes . Some m ums m igh t be able to
sa y `W h at th e hel l I’ ll d o i t w he n I co me h om e’ , bu t wit h An ge la, w ell by
the tim e she’ s come h om e, had he r tea , gone to bed I fe el like I ’ m on a
m err y-go -r oun d t hat I ca n’ t get of f. B y t he tim e yo u’ ve ® n ishe d o ne th ing ,
it’ s time to start someth ing e lse. Doing the hous ew ork is the last thin g I
want t o do last thing at n ight.
M any mo the rs reported they had con str uc ted d aily or week ly tim etab les to `ge t
things done’ w hile also ® nd ing time to follow some self-intere sts . One mo ther
de dic ate d ce rtain days to hou sework an d we nt to to wn with a relative on d ays, days
sh e described as `m y days’ . W hile sc hed uling in tu itively s uggests a pr act ice for
lib er ati ng tim e, it als o de pr ive d p are n ts o f s po nt an eit y, a f ea tu re th ey fel t
ch ara ct eris e d th e live s of th ei r p ee rs. P are nts , f or ex am pl e, co uld sel do m ta ke up
so cia l in vit ati o ns f ro m f rie nd s u nt il th ey had m an ag ed to ® n d c are for t he ir o ff sp rin g.
Their exp eriences invo lve d a d enial of spo nta ne ity s imilar to that ex perience d by
pe ople with d isa bilities (K elleher, 1988) an d o ne that is b oth experien ced as a f orm
of disad va nta ge a nd a re du ction in t he level of con trol ind ivid uals ca n exert over
their d ay to da y lives, as th is father noted:
It’ s n ot th at we don ’ t hav e the opp ortun ity to d o thing s we’d like to do, it’ s
the pric e yo u have to pay fo r it. The plannin g you hav e to d o. Look ing fo r
so me on e to lo ok afte r her for a few h ours, or a night, o r a week en d. Y ou
stand back an d loo k at yo ur friends and neighb ou rs an d no matter how
hard yo u try you’ll never have a life like th em . I feel m ore d ifferent than I
di d tw e nty ye ars ag o. W e c an ’ t ju st g et u p a nd w alk ou t, t ha t’ s t he
differ ence. I k no w what m y frien ds d o an d ca n do . Th ey d on’ t have to p lan
so far ahe ad . T he y do n’ t h ave to tu rn do w n e ven ts m on th s in ad van ce
be ca use t he y k n ow th ey ’ re al re ad y g oin g ou t on e Sa tur da y in th at m on th .
For th em it’ s a matte r of get u p and go. T here’ s n o spon tan eity with S am .
Ev ery thing has to be planned.
The sc heduling of time wa s ne ces sary to avoid the rea lisatio n of `time panic ’ (Lym an
& Sc ott, 1970, p. 207) o r a particu lar version of it ch aracte rise d as th e `Dracu lar
Sy nd ro m e (L y ma n & Sc ott , 19 70 , p p. 2 10± 21 1) . T h is co n cer ns t he ne ed t o be at th e
right place at the righ t tim e in o rder to avoid a po ten tially damage d reputation. For
ex am p le, p ar en ts no ted th at n o t on ly m i ght th eir of fsp rin g be d is tra ug ht if th ey we re
late in returnin g ho me to be th ere whe n they returned from t he d ay ce ntre, bu t also
it was em barrassing for the m to h ave t o exp lain t o others why they had o ve rstepp ed
th eir ti me . Th us , the sc he du le s par en ts co ns tru c ted w er e no t s im p ly p ra gm a tic , b u t
als o had a moral gro unding. T heir need to avo id time -pa nic inevitably im plied the
cu ttin g sh ort of free- tim e ac tivities . Furthermore, alth ou gh the time libe rated b y day
service made other ac tivitie s possible, it s sim ilarity to scho ol time o nly further
remin de d paren ts th at th eir liv es w ere f rozen in t ime. Th e follow in g comm en t ma de
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St ru gg le s w ith T im e 389
by o ne m ot her r eve als the centrality of a n `outsid er’s perspe ctive’ in the se lf-s cru tin y
of t he ir re sp on s ibil itie s :
Fittin g things into the tim e I do have is d if® cult, ju st like it was when he
was in scho ol. M y life’ s b een tim ed t o specia l schoo l buses a nd c entre
bu ses. I’ ve h ad nightmares abo ut th e car brea kin g down an d not being able
to get home in time. I can’ t afford to b e ten minutes late. So I alw ays plan
to g et back well in advanc e of w hen the bus is du e. It’ s ne ver hap pened but
it c ou ld . If I di dn ’ t g et b ack in t im e I ’ d t hi nk h e’ d b e h ys ter ic al. M ay be
he ’ d wander off. An d ho w do you th ink it would look if he ca me b ack from
the cen tre a nd t here wa s no-on e he re to s ee to him ? It w ou ld be p retty
aw fu l if t he y h ad t o ju st du m p him o n th e d oo rw ay. It’ s the n igh tm ar e
scena rio .
Paren ts liv es w ere not co mp let ely c onsum ed by th eir pare nta l identities a nd thro ugh
the `slic es of time’ ( Fin e, 1990) created th ro ugh the s erv ice s ystem , there w as some
tim e to h ave a li fe bey on d p ar en tin g. Ho w ev er, s el do m d id th is `fr ee d tim e ’ m ee t th e
ne eds of p arents, either in te rm s of q ua ntity and q uality. Fo r moth ers , the
re sp on sib ilit ie s f or th e co mp le tio n an d sch ed u lin g o f do me st ic wo rk , a s we ll as
havin g to be home b efo re th eir o ffsprin g re tur ned fro m day ce ntres, left lit tle
av aila b le t im e f or p aid e m plo ym e nt :
The earlie st I can get into to wn is 1 0.3 0 an d the n I hav e to le ave b y 2.3 0
to m ake sure I ’ m h om e. I c ou ld leav e a l ittle b it lat er, bu t y ou ha ve t o b ear
in m in d th at som eth ing might hap pe n to the bus an d Tom might get ho me
be fore m e. I’ m g lad T om ’ s t her e ® v e d ays a w eek a t th e AT C , I’ ve he ard
of so me p lac e s wh e re it ’ s a da y h er e a nd a d ay t he re . A nd so m et im es a n
ex tra d ay a t h om e. I c ou ldn ’ t c ope wit h th at. A s it is , I ma nag e to ® n d so me
tim e to m y sel f, b ut it ’ s n eve r a w h ole da y th ou gh .
Sin ce p are nting c ontinued b efore and beyo nd the ho urs o f day c entre ac tivity,
tim e -o ut fr om th eir p ar en tin g re sp on si bil itie s w as al so m a de p os sib le b y fam i ly
su pp or t se rv ice s. W hil e w e lco m ed th es e ty pic a lly pr ov ide d r igi d blo c ks o f t im e. It
was impos sib le fo r parents to expan d th e tim e availab le to t hem in the way their
friends could :
We manage t o get ou t wit h our frien ds m aybe o nc e every t hree w eek s or so.
We can be out there h aving a g reat lau gh, maybe h aving a m ea l, an d then
so me on e will s ay `Let’ s go on somewhere els e!’ My hu bby and I just lo ok
at e ac h oth er a nd sig h, `S orr y bu t w e’ ve g ot t o ge t bac k fo r To m ’ .
In g eneral, their lives had to b e squeezed int o the `tim e slices’ g en era ted by d ay
se rv ice s a nd fa m ily su pp or t s erv ic es . In o rd er to cre at e t im e for ac tiv itie s tha t w o uld
otherwise be squee zed ou t. Som e pa rents m an aged activ itie s, s uch as s ho pping, by
tim in g t he m to th e le ng th o f a v ide o o r m us ic ta pe , as o n e fat he r co m me n ted :
I do n’ t supp os e I should be tellin g you th is but, altho ugh I don’ t lea ve her
for lon g mind y ou . I pop out to th e shops for a w hile and lea ve h er by
he rse lf. I’ ll p ut a C D on for her and get b ack bef ore it ® n ishes.
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390 S. Tod d & J. Shea rn
Howeve r, while s ervice s we re va lued fo r the time they did c reate, the service b ased
regulatio n of time offered a lack of sy nchro nic ity w ith p arents’ o wn n eeds and failed
to p rov ide , at least from the perspectives of p are nts, suf® cient tim e for them to
en ga ge i n ac tiv it ies a t the sa m e tim e s as t he ir p ee rs. In th is f ash io n, t im e op er ate d
as a form of segregatio n as e ffe ctiv ely a s any phy sic al boun dary (s ee, for exam ple ,
Le wis & Weigart, 198 1; Pa rry, 199 0). As th e extrac t fro m one in terview b elow
de scribe s, th e tim e pa rents m an age d to ® n d seldom co incided co nveniently w ith t he
temp ora l patterns o f the wider co mmunity :
We get tw o ho urs a w eek between 7.0 0 an d 9.0 0p m. W he re can I go at that
tim e o f nig ht? A nywa y, two hours is n either here nor there. Most o f the
tim e I’ ll sit in th e front o f the tele’ , sometim es I mig ht go ou t and visit a
friend. I nee d at least th ree , ma ybe f ou r hou rs. A s it is, I have a half hour
to get so me wh ere, a half ho ur to g et back . Th at leaves me w ith on e ho ur.
It m eans if we want to d o somethin g we have to ta ke Jo hn with us. It’ s the
evening that’s the w ors t, and it’ s usua lly th e little th ings that get you down.
We’ d like to go m or e to the th eatre, but we’ re n ot given th e tim e to be able
to do that eith er. And we can ’ t take Joh n bec au se he ’ d never sit th rou gh a
whole perfor ma nc e. So we try to ® t in a s ma ny thin gs as we can in to th e
da ytim e . But eve n th en it’ s no t a wh ole d ay. You still fee l you’ re ® tting
things aro un d so me bo dy e lse . It would be n ice if ou r daytim e c ould be
m ade a b it lo ng er ju st s o we co uld h ave a b roa de r sc ope . It’ s th at p eri od
aft er lu nc h an d yo u’ re t hin kin g, `J ohn ’ ll be h om e so on ’ . I t’ s im po rta nt to
have time to ours elv es, w e sh ou ld have. It wo uld be nice if we just had a
bit m ore tim e no w an d then so w e co uld do som et hin g for o urselv es.
The data s ugges t that se rvic es h ad litt le appreciation of the socia l clock s that
regulated paren ts’ lives a nd of the in consistency b etwee n the ir lives an d the
pe rce ive d lives o f th eir p eers. A dd itio na lly, since paren ts e xerted litt le c on trol over
th e t im ing o f se rv ice s t he y w er e a llo ca te d t he y, t he ref or e, str ug gle d to l ea d l ive s t hat
pe rm itted a ric h or diverse ran ge o f social participation, which they saw as typical for
th eir p ee rs . Th u s, pa re nt s co uld b e c ha rac te ris e d as liv in g `ou t of ti m e’ n ot o nl y in
the sen se of h aving d eviate d fro m th e norm ative timin g of f am ily care ers , but also in
the sen se th at their n on -pare nta l live s we re liv ed ou tside of the conv entional times
of a du lt so cial activity. T heir id en titie s as paren ts w ere so de ® n ite an d demanding
that ot her aspect s of th eir self ident itie s existe d, how eve r meagre, o nly in th e cr acks
of t im e op e ne d up by se rvi ce s or o th er su pp or t m ec ha nis ms .
If p are nts fou nd that they h ad little co ntrol o ver the tem po ral prope rtie s of
paren tin g, it w as c lea r that th e exp ec tat ion s of o the rs h ad control ove r them . Th ey
fe lt th at th e bo u nd ari es b et we e n th eir va rio u s as pe ct s of th eir i de nt itie s w ere w e ak ,
such th at when e nterin g into relatio ns hip s pre dic ated up on b ein g an other type of
actor , for e xam ple, spou se, colleague o r friend , the parental id entity alwa ys
threaten ed to bre ak thro ugh. As Becke r & Geer ( 196 0) indic ate, late nt id en tities are
po ten tial ide ntities th at are m ad e ma nifest only wh en ot hers bring them into play.
Paren ts desc ribe d th e fre quency they were re mind ed o f their sta tus , and as on e
paren t su mmar ise d: `It ’ s alm ost im po ssible to forget that y ou ’re a p are nt’. Th us, the
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St ru gg le s w ith T im e 391
paren tal id entity ten ded to encroac h up on o ther social in volveme nts d evelo ped by
paren ts. Parent s, fo r exa mple, not ed th at it was dif® c ult to escape sim ply being s een
as a pa ren t, a nd t ha t ha vin g d on e so ma de t he m v uln er abl e to fee lin gs of gu ilt . W he n
paren ts spok e about self-time it was not only typ ica lly s ubserv ien t to p are nt t ime,
bu t also a basis w he re others migh t vie w ha vin g su ch n eeds as s el® sh:
The ® rs t thing peo ple as k when yo u m eet the m is , `Have y ou got children?’
`Ye s on e’ . `H ow old ?’ `T wenty seve n’ . `A ny g ran dc hild re n?’ N ow wh at do
you say? So you s ay `N o’ . T he n they sa y, `M arried ?’ `N o’ . `W ha t do es she
do th en ?’ W hat can I say? I c an’t say s he’s a sec retary, you can ’ t be a liar.
`Sh e d oe sn’ t wo rk ,Ð sh e’ s m en tall y ha nd ic ap pe d’ . `O h d ea r! H ow d o yo u
mana ge ? Where is she then?’ An d then it go es o n and on. So you feel guilty,
th at y ou ’ re on ho lid ay an d s he’ s in a h os tel. Y ou fee l y ou’ v e g ot to say s he
thoro ughly e njo ys it. Y ou feel gu ilty that you ’ ve left her behind . Th ey sit in
ju dg em e nt.
M ost fath ers rec ognised th at w ork wa s a dom ain that p ut som e dis tance b etw ee n
them an d th eir paren tal ro les. Ho we ver, so me fathers st ated th at it was no t un usual
for the m to be c alle d at work by day service pe rso nn el askin g th em to come a nd p ick
their offsprin g up if th ey w ere havin g problem s with th eir childre n or if t hey were ill.
In g en eral, paren ts also d escribed that the y alw ays expected the te lep ho ne to rin g
when their offspring were in respit e care, wheth er th ey were on holiday or sim ply
ha vin g a n o ve rn igh t br ea k. Pa re nt s als o c arr ie d w ha t m igh t b e ter m ed t he s ym b ol s
of `e ver -availa bil ity’ , for example, `ble ep ers ’ or `c ar p hones ’ , that re¯ ected the
do minance o f the par ental id en tity . These may be comp ared to a cc ountants ’
ow n ers hip o f ® lo fa xe s, sy m bo lic re mi nd er s o f th e im po rt an ce of tim e a nd its
de dic ation to the company (Coffey, 1 994 ). O ne m other used th is compariso n with
profe ssiona l roles to give an account o f her exp erien ces:
I can say I s hut my self off to a ce rtain extent, b ut if the phone g oes you
panic . I thin k yo u’ re alw ays waitin g for the phon e to ring. You hear it rin g
an d yo u think, `That’ s it!’ W e’ ve go t a ble ep er in case anythin g go es w ron g
w he n w e’ re o ut. It m a ke s yo u f eel a b it sa fe r. Ju st l ike a d oc to r on c all I
su pp ose . Y ou f eel h app ier t hat yo u’ v e g ot it w ith y ou, b ut be cau se y ou’ v e
got it you expec t it to ring. S o wh en the phon e go es, the ® rst thin g yo u
th in k of is `Pl eas e G od , do n ’ t let i t be th e ce nt re! ’
The te nd ency fo r the parental id en tity to d isru pt any o the r lin e of a ctivity for
moth ers in partic ular wa s acutely problem atic an d acted as a signi® c ant barr ier t hat
pr eve nt ed t hem fr om se eki ng ful l-tim e em plo ym e nt. T he y to ok the pr op en sity of t he
paren tal identity to break in to an y other in vo lve ment as one th at em ployers w ou ld
expect an d, t herefore, wo uld disqu alify them from being c on sid ere d for w ork , as t his
m oth er’ s c om me nt su gge sts :
If I ha d a job I’ d have to be pr epare d to leave a t the dro p of a te lep hone
call, an d I’ d h ave to be ba ck at 3.30. H ow m an y pe op le wa nt to em ploy
so me on e like m e. It doesn’ t m ake m e ve ry desir able does it?
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392 S. Tod d & J. Shea rn
An other mothe r comm ented t hat the dif® cu lty o r im possibility of m an aging b oth a
paren tal and occu pational c areer had be en a violation of he r expectations and o ne
w hic h s ee me d t o be im p or tan t in c on tri bu tin g t o a s en se of un fu l® lm e nt in l ife , a
po int return ed to s ub seq uently :
I’ d like to have a m uc h mo re in teresting life than I’ ve had . I wou ld lik e to
have de voted m ore of my time to my painting so that it would have been
m ore th an jus t a ho bb y. I wo uld ’ ve lik ed to ha ve a g ood j ob, to ha ve
paint ed for a living. But I cou ld never have coped with it all. Kate w as a lo t
of w ork w hen sh e was you nger, an d, w ell it ’s not the th ing you can pu t your
® ng er o n . It’ s ju st t hat th er e ne ve r se em e d to be e no ug h tim e . If I c ou ld
have sp ent more tim e on anything it would h ave b ee n painting. You know
that wh en you have child ren you have to go off on a differen t road, bu t you
expect it to join back again . It’ s like you m igh t’ v e tak en a bit longer to get
to w here yo u wanted to go but you’ d get there a ll the sam e. W ith m e, w ell
I do n’ t k no w w here I e nd ed up .
M an y of t he m ot he rs w e sp ok e to f elt th at e m plo ym e nt w as o ne p ar tic ul ar d om a in
which ha d be en denied or lost to the m, even in the p resent. Un like mo st other
moth ers , there ap pe ared to ha ve been n o tim e when e mploym ent and m ot herho od
had be en com patible in p ers onal caree r terms . Ho we ver, as th is m oth er n otes, one
of th e f ew w ay s o f c opi ng w ith a v iola tio n o f ex pe ct ati on s w as n ot to d we ll u po n
them , that is to becom e resigne d to th eir lo ss :
I would ha ve gone back to work. P ro bab ly in the of® ce with m y hu sband.
I tried for a while bu t it go t too m uc h fo r me . We did n’ t get th at m uc h
su ppo rt s o I g ave it u p. It’ s w ha t I would have be en d oin g th ou gh. Bu t yo u
ca n’ t al low y ou rs elf t o t hin k o f th e th ing s y ou co ul d’ v e d on e b ec au se n o
matter ho w much y ou m igh t ha ve wanted to , you c ou ld never hav e done
them .
Overall th en , th e nature of p arent ing w as s uch tha t it m ad e m ost oth er form s of
so cial part icipation c ondition al on the pe rm ission o f others, and subj ect to the
rigours of time plan nin g and sch ed ulin g. G oin g ou t with the ir adult offsprin g wa s
als o not gu aranteed as a mean s of solving p ro blems of soc ial rest rict ion s inc e many
paren ts de sc ribe d th at th ey fe lt they were continually un der close scrutiny to
function a s par ents an d to overs ee the behaviou r of their offsprin g (V oys ey, 1975).
The data above in dic ate the pervas ive an d almo st bo un dless n atu re o f the parental
identity an d reveal how the qu ality of ever-acc essibility acts as o ne of the ma jor
att ributes u sed in the moral evalu ation o f paren ting ( Ze rub av el, 1981, p . 346 ). It
lea ds to a situation where p are nt s were expecte d to fu l® l th eir p are ntal ob ligatio ns
when ever demanded an d where they h ave little f reedo m of ac tion or ch oic e in the
ac tivi tie s t he y m igh t l ike to en gag e in. So ex ten si ve w e re t he se o bli gat io ns , th at eve n
at ho m e , p are n ts fe lt the ir o ffs pri ng w e re no t alw ay s su pp or tiv e of th ei r end e avo u rs
to h av e so m e pr ivat e ti m e. A s th is m ot he r no tes , tim e c an b e co n sid er ed a s a ty pe
of p rivate prop erty wh ich ca n be lost or stole n:
M y da ughte r do esn’ t de mand m uch from m e. B ut P atrick, when h e’ s a t
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St ru gg le s w ith T im e 393
ho me you can’ t even watc h a television pro gram me a ll the way through.
He’ s co nstan tly dem andin g some thin g. H e steals t ime fro m yo u. H e tak es
tim e he ’ s no t entitle d to. S om etim es he’ ll bang and crash th ings an d jus t
glare at you. It’ s dif® cult to m an age , ’ co s tha t mean s it’ s c om e to the poin t
th at he ’ s a lre ad y s po ilt w hat y ou w an ted t o d o. Y ou s ee h e c an ’ t t ake th e
hin t. W he n he w as y ou nge r yo u could g ive him someth ing t o occupy his
mind , like crayo ns and pain ts. N ow it’ s not that easy.
Pe rp etu al P ar en tho od in th e M ak in g
The proc ess o f be co min g a p are nt o f a pe rso n w ith learn ing dis abilities is a
co ntinuous, life-lo ng pro ce ss. For s om e, the o bdura te n atu re of their lives , an d th e
resistance of the tem poral w orld to y ield to their control was a m ajo r practica l and
co gnitive pro ble m in their lives . For these pa rents, who m w e categoris e as `captive
pa re nts ’ , th ei r dif ® cu ltie s la y in th e fa ct t ha t th ey ha d in ve st ed in a n al ter na tive
life style th at w as beco ming le ss an d less rea lisable, an d ph ras es such as `of bein g a
prisoner’ , `of no t being free’ and th e yearning f or `Freedom !’ scattere d th eir ac co un ts
of their situ ation. Th eir expe riences were m uch like those of the newly e me rging
industria lis ed class es d es cribed by L an de s (1983, p. 229 ), wh o `¼ felt th e f act ory to
be a k ind of ja il wit h the clock as the lock’ . Fo r the se parents, there wa s a fee lin g tha t
they were lo sin g aspira tio ns to a life beyo nd p arent ing w hich th ey valued. O ve r tim e
they had re alis ed t hat a normal life , a symb ol o f som e valu e to th em , was increasingly
be yond th eir s cop e. C on seque ntly, they ex pe rien ce d a `loss of self’ (Ch arm az, 19 83)
an d a growing se nse of soc ial is ola tion . For some fa the rs an d moth ers , cap tivity
stemmed fro m their investment in a vision of retirem ent, w hile for some o f the
yo un ge r m o th ers it st em m ed fr om t he dim i nis hi ng p ros pe ct of ® nd in g p aid
em ploym ent coup led to the la ck o f satisfaction the y de rived f rom what Fin ch (19 83 )
ha s d esc ribe d a s th e `vic ar iou s c are er ’ :
M ore a nd m ore I’ ve been feelin g that life is pa ssing m e by. I’ m sick of bein g
Ian ’ s wife and T om ’ s moth er. I think I’ ve lo st m yself, and that T om is the
on e w h o’ s sto pp in g m e. I re m em be r w h en yo u c am e t o t alk at ou r p are nt ’ s
gro up and yo u we re talk ing ab ou t retire me nt from parenting. We ll I
th oug ht t he n t hat I’ m re ady to retire no w. Yo u k now I oft en t hin k of ot her
things I could d o now. But To m always comes ® rst. I’ ll te ll yo u how I feel,
like a pris on er.
Thes e pa rents m ad e fr equ en t us e of res pite ca re. While provid in g th em with an
op po rtu nity to emu late a form o f `post-p are nt hood’ , t hey saw it as a for m of par ole
w hic h h igh lig h ted rat he r t han di mi ni sh ed t he ir s en se o f en tra p me n t. A lth ou gh it
allo w ed th em to h old onto a com m itm en t to an alternative lif estyle , the time gain ed
fro m resp ite could ne ver b e fu lly satisfyin g:
I get brough t back to eart h wh en the plane lands, or when we know it’ s
tim e t o se ttle t he b ill. Y o u ne ve r fee l as if y ou ’ ve h ad e no ug h tim e .¼ Y ou
get a taste for how t hin gs could be . Time toget her with my hu sband an d
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394 S. Tod d & J. Shea rn
a se x life , and relaxatio n. I supp ose it’ s a case o f wh at yo u’ ve n ever had you
do n’ t m iss. When Angela was in re sp ite last time I t ho ugh t, `I don’t really
want h er b ack . W ouldn ’ t it be nic e if she could sta y th ere !’ That’ s wh en I
realised I didn ’ t wa nt t o look after her anymore . I’ d like to escape f rom it.
So m et im e s I ’ m s cr ea m in g ins id e tha t I do n’ t w an t h er ba ck a gai n . T h en I
feel guilty, really guilty, that may be I’m just being se l® sh.
While thes e paren ts d esired to b e re leased fro m t heir pa rental roles, the p erceived
lac k of availab le h igh -q uality resident ial options and the fe elin gs o f gu ilt their
sentiments t o be releas ed en gen de red , on ly c om po unded the ir fe elin gs of b ein g held
captive. U sing supp ort service s co uld als o induce feelin gs o f guilt partic ularly since
so me parents f elt the m ore they used th em , th e more th ey f elt they m ay b e deny ing
other p arent s op portu nities for re spite. T hu s pa ren ts tend ed t o feel tha t to u se
support s ervices as m uc h as t hey wo uld like cou ld b e vie wed by others as se l® sh
behaviour:
The th ou ght of a few days without h er is h eav en . Bu t it ma ke s you fee l
gu ilty , it’ s true. W he n you use sho rt-t erm care, yo u feel you need to have
a re ason. S o w hen I bo ok h er in I giv e so me type of reas on , like w e’ v e go t
so me thing plan ned, or that I’ ve bee n a bit ro ugh. You do n’ t fe el yo u say I
ju st fa nc y a l itt le bi t of tim e to my se lf. T h en yo u al so f ee l y ou ’ re u s ing u p
tim e othe r mo thers m igh t want more th an y ou. So that s top s yo u fro m
askin g for too m uc h.
The disco mfort of bein g captiv e prom pted some paren ts to s urr ender gra du ally th eir
interest in an a lter na tive lifestyle. This w as en co ura ge d by a re co gnition, in the face
of the stub bo rnn es s of the temporal boundaries of p are nting, that on-goin g
resistance wa s self-defeating. They cam e to se e that they we re co ntributin g to th e
dif® culties the y exp erien ced by ye arn in g for a typical p arental career:
It’ s to o ea sy to si t b ack a nd th ink a bo ut all th e t hin gs yo u co uld b e d oi ng.
We us ed to , bu t wh at’ s the point in makin g a rod fo r your o wn b ac k and
making yo urself miserable . I t hin k at the end of the da y you ’ ve got to m ake
a life fo r yo urself an d just take all the op po rtu nities you ca n to get out an d
ab ou t f ro m tim e to t im e. A ll k id s h av e t he ir dr aw ba ck s a nd t he ir
co mpensations, an d Sheila’ s no d iffe ren t. I think if yo u c om e to accep t that
an d some of the lim itations you su rvive. If you didn ’ t, you’ d ju st drive
yo urs elf m ad. I do n’ t thi nk yo u t ake a ny sp iritu al co mf ort fr om it . It’ s jus t
that I’ m a pragm atist , you j ust get on a nd s ee to it.
Fo r paren ts of ad ults with lea rn ing d isa bilities, on e of the distin gu ish ing f eat ure s of
th eir c are e rs is th e le ngt h of t im e th ey ac tiv el y an d di rec tly c ar ry o ut th ei r p ar en ta l
work, and the im plicat ions th eir perc eptions of its span has for th eir s tyle o f cop ing.
Time , or p are nt s’ antic ipation of the stretch of tim e ru nn ing a he ad o f the present,
must a lso b e taken into ac count for the w ay it e nc ourages p arents to m ake some
accom m od atio n t o the contin uing c en trality of p are nting. Fo r some p arent s, the
ne ed to come to ter ms w ith d im inishing o pportun ities to re alis e their s elf-am bit ion
was a w ay of dea lin g with th e stretc h of tim e ah ead of them:
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St ru gg le s w ith T im e 395
T he re a re tim e s w he n I s to p an d th ink w e h av en ’ t p us he d o urs el ves
en ough. Y ou kn ow , that we d idn’ t make the effort to do mo re thing s for
ou rs elve s . If on ly th ere h ad be en so m eon e to en co ura ge us a bi t m or e. W e
didn’t do it for o urselv es . Maybe it’ s b ec aus e yo u neve r really s top and
think , `I wo nd er w hat I’ ll b e do ing ten , ® fte en, twe nty ye ars fro m n ow ? W e
expected it to be a long haul, a nd there’s a no ther lon g ha ul to c om e. I th ink
we cou ld go on a nd o n ab out what it would be like if L iz wasn ’ t
handicapped. You co uld sum it all up by s aying t hat oth er p eople can relax,
have time an d opportu nity to d o th ings fo r themselves. Bu t it’ s n ot really
in a nyb od y’ s inte res t for u s to m oa n ab ou t it, is it? I th ink an y am bitions
we had for o urselves w en t ou t the win do w a lo ng tim e ago, an d ther e’ s
no thing t hat can be d on e ab out it.
T he ad ju st m en t ma de b y oth e r par en ts w as pr om p te d by t he lo ss of o pp or tu ni ty to
fu l® l t hei r e xp ec tati on s. Fo r e xam p le , th e l os s o f a sp ou se bro u ght w ith it an en d to
an y aspira tio ns to a life be yond parenting. In the follow ing case, a w id ow v iew ed
po st-paren tal life as a ccess ible only to ma rrie d coup les:
I get a bit sel® sh s om etime s and think `W he re’ s my life goin g? W he n’ s it
going t o sta rt?’ B ut the olde r I ge t the les s am bit iou s I am fo r my self. I
su ppo se I co uld m ak e t he ef fort, b ut I’ m no t r eall y tha t s ocia ble . I ’ d h ave
to go ou t an d meet n ew f rie nds. Pe ople do make you feel w elc om e, b ut I
feel differen t from them . You see they’r e tw o, a nd I ’ m o nly o ne. You’ re
alw ay s on yo ur o wn and you ca n ne ver close that g ap .
Ad ju st m en t c an als o b e p ro m p ted by th e r ea lisa ti on th at the ir dis ab le d o ffs p rin g w il l
ne ve r le ave th e pa re n tal h om e e ve n if a p lac e in a re sid e nt ial s erv ic e w as a vai lab le .
So m e pa re nts , fo r exa m ple , fe lt th ey h ad `m is se d th e bo at’ :
I would say to an y paren t of a c hild th at getting h im to lea ve hom e at 18
is im po rtant. I think at tha t age they m igh t ad apt to th e ch ange m ore eas ily.
It’ s a tim e of change for all the f amily. B ut the longe r yo u leave it the m ore
they be come s ettled in . We ’ d ha ve lik ed G ra nt to m ove into a ho use. I’ d
alw ay s looke d forward to the time when I w ould be 6 5 so t hat I c ould st art
do ing t hin gs for myse lf. I think it’ s too late for us now. I can im agine the
up heava l it would bring f or all of us if Gran t left home n ow . It wouldn ’ t be
good f or any of us.
As a resu lt of the fact that o pp ortun itie s were not av aila ble at the right t ime or that
other e ven ts had re mo ved som e ot her pos sibilities, pare nts cam e to re de ® ne the
ce ntrality of p are nting a s the only major line o f activit y open to them , be gin ning to
interpret it in a mo re po sitive light t han hith erto:
It ke ep s us go ing any way. If sh e left hom e we ’ d just be couc h po tatoes.
When I wa s yo unger I g ot frustrated th ink ing about the things I w ould lik e
to d o. B ut w he n I go t older, I le arn ed m y lif e w as not b ein g ab le to do
an yth ing, no t being a ble to go an yw he re. I just clos e my eye s and tell
myse lf, `Yo u want to do that? You can’ t, so the re! ’ A fte r a while I becam e
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396 S. Tod d & J. Shea rn
co nte nt t o sit at hom e b ecaus e, whenever the rare o pp ortunity c am e up to
go a nyw he re, I co uld n’ t th ink w he re to go , s o I d idn ’ t b oth er. T hat ’ s h ow
it w ork s out, you just s lip into it.
One of the resu lts of acc om m odatin g to t heir curren t situation ap peare d to b e that
so me p are nt s bec am e co mmitted t o the ir paren tal lifesty les . We describe thes e
paren ts as `c ap tiva ted’ since the y no w an ticipated th at th e loss of th e paren tal role
would no t on ly deprive th em of a m ajo r so urc e of s elf m eaning, bu t als o one that
would be dif® cu lt to re place (see for exam ple O at ley & B ro wn ( 198 5) . Th e group o f
captivate d p are nts also inc luded tho se for w hom the pa rental ide ntity h ad a lwa ys
be en of s o high a salie nce, th at th ey ha d never attac he d valu e to m ain ta ining a
su bs tan t ial s elf o ut sid e o f th e fa m ily. F o r all ca pti va ted p are nt s, t he ir co m m itm e nt
to the pa rental role w as e xp osed by their rea ctio ns to the exp erience of resp ite c are ,
as illus trat ed b y a com m en t from a 69-ye ar- old wid ow of a youn g m an with m ult iple
disabilities. `Freed tim e ’ can be e xperienced as `waitin g’ , as o ne m ot her described :
If N icky li ved s om ewh ere e lse I’ d be d evastat ed. I’ v e h ad a we ek’ s ho lid ay
witho ut h im . Th e da ytime w asn’ t too ba d. I c an say to m yself `O h I’ v e go t
tw o ho urs, maybe eve n fo ur’ . Th en I c an c om e ho me when I fe el like it,
have a s hower, m ake s om e supp er a nd g o to b ed , all w ithou t having to
ch ange bu ms. But I wa s lost in the nights. It made me wonder wh at life
would be lik e without h im , it wo uld b e so com pletely differe nt. I’ d miss
him so m uc h an d I’ d h ave to m ake an effort to m ake a new lif e for myself.
I’ d j ust b e los t.
An other mo the r felt tha t th e tim e she had w ithout her adult son, w hile bringing
so m e re w ard s, w a s als o e xp er ien c ed a s pr ob le m ati c:
H e go es i nto s hor t-t erm c are ab ou t ev ery fo ur to six m on th s. W he n h e’ s
there I c an’ t settle. I h ate th e house without him. I do n’ t w orry about him
when h e’ s gone. It’ s n othing like th at. I n a way I even enjoy it, I can get
things do ne that I c an’ t do w he n he’ s aroun d. T he ho use can ge t a really
good g oin g ov er. But I would n’ t like it t o ha pp en th at o fte n be cau se it gets
a bit lonely.
Altho ugh th ese paren ts w ere c om mitted to th e p arental identity a nd v alu ed its
substantive nature, it was no t, in all cases, the ir only inte rest. R ather, paren tin g w as
a lin e of activ ity which ® tted in with their oth er curre ntly m inimal, external inte res ts.
Av ailable tim e wa s still valu ed and ju st as c aptive p are nts mig ht b eco me cap tivate d,
so too co uld the reve rse pro cess oc cur. As a resu lt of a loss o f day ser vic e or as a
co nsequ ence o f grow ing con¯ ict b etwee n p are nt a nd offspring, c apt ivated pa rents in
ou r study could exp erien ce a ne w am bivalence ab ou t the ir paren tal ro les, rev ealing
th at st res s in a val ue d ro le m ay d im in ish a n ind iv id ua l’ s co m mi tm en t to it (s ee , f or
exam ple , Wheaton, 19 90). T he p otent ial for th e comm itme nt o f eve n ca ptivat ed
pa re nts to c ha ng e on ly hig hl ig ht s t hat w hi le m an y p ar en ts vi ew ed th e ir c ur re nt
situat ion h as a dvantage ou s, th ey w ere fully awar e of the c os ts paren ting h ad
extracte d over th e co urse of t heir careers, as one `cap tivate d’ m othe r comm en ted:
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St ru gg le s w ith T im e 397
Ev ery n ow and th en it b uilds u p an d I wond er that if I knew w ha t life w as
go in g to b e l ike t ha t I’ d c ho o se to g o th ro ug h it all a gai n . I t’ s p re tty
differ ent for y ounge r m others now ’ co s the y ha ve t he chan ce o f ab ortion.
I’ d say the y’ d have to thin k pre tty carefully abo ut bringing a c hild like
M artin into th e world. It’ s ded ica ted workm an ship and you’ ll have to give
up a h eck of a lo t. But I wouldn’t part with him n ow. I jus t hop e I live to
be a h un dre d so tha t w e’ ll d ie clo se to e ac h ot her .
Discuss io n
Pa rentin g as a C hronic Side-trac k
It wa s e v ide nt f rom ou r in te rv iew s w ith p are n ts th at th e d ai ly st rug gl es o f c op in g
with pa rentin g were very m uch tie d to their view s of their p ositio n in the life c ourse
an d its asso ciated m ea nin gs . It is, th ere for e, dif® cu lt to understand wh at pa ren tin g
mean s w ithou t havin g som e v iew o f ho w this in teract ion in ¯ uenced their day-to- day
live s. The data p rovide an accou nt o f lon g- term p arenting that is at odds w ith the
life styles of m os t other p are nts, a discrepa nc y pa ren ts in this study we re ac utely
aw are of, an d on e tha t ser vices an d res earchers h ave s o far gene rally no t yet
re co gn ise d . T h e fam il y life cy cle ca n be v ie we d as a n ex am p le of a so ci al tim e ta ble
(R ot h, 19 63 ) th at p ro vid es a po we rfu l me an s fo r sh ap ing i nd ivi du al e xpe ct ati on s
throu gh th e social n orms re gu lating the sequenc ing a nd timing of even ts, an d to
which co mp lian ce is achieve d th rou gh a m ixture of pro script ion s and potential
sanctioning (Neugarten et al., 1968; Neugarten 1975; Hagestad, 1986). Roth (1963,
p. 1 06) argues, a `¼ ª ch ronic sidetrac kº is creat ed for’ in divid uals who fail to m eet
w ith th e no rm s o f p u nc tu alit y e m be dd ed w ith in s oc ial tim e ta ble s. T he pa re nt s in
this stu dy h ad not so m uc h failed to me et these n orm s as t hey ha d ne ver b een
expected to do so. It w as a `sidetrac k’ laid do wn fo r them from a v ery early age, the
co nt ou rs of w h ic h on ly be ca m e vi sib le at k ey p o in ts in th ei r live s .
The `ch ro nic s ide track’ thro ugh wh ich `perpetual paren tho od ’ wa s created fo r
paren ts in th is st udy inv olved an alm ost total re alis ation of the id eal con struc ts of
invariab ility of ex perience a nd a ccess ibility as a par ent; a contin uous an d dom ina tin g
in vo lve m en t t ha t r evo lv ed a ro un d t he ti m eta ble s o f t he ir of fsp rin g a s o pp os ed to
their own referen ce gro up; where extrap are ntal activit ies , lim ited in sc ope as they
were, dep ended u po n ad van ce d and carefu l planning ; and ® n ally a perception t hat
their liv es lacked the spo ntane ity that was se en as givin g co lour and texture to the
live s of the ir peers. As a res ult o f the co mb inatio n of the ir sh ort term pe rsp ec tive s,
their re lative inability to free them selve s fro m th e demand s of pare nting and its
ideolo gical p roper ties, an d th e lac k of alte rnative pr ovisio n fo r their offsprin g,
paren ts in this stud y were d raw n to ward s the inesca pab le c on clu sion that they w ere
`pe rpe tu al par en ts’ , an i den tit y t hat fu nc tio ne d as a t yp e o f `m as ter s tat us’ (B ec ke r,
1963, p. 33). T hat t heir e xp erie nc es arou sed a ran ge o f d if® cult emo tions; the
pe rce ive d em b arra ss me nt that could c om e w ith st eppin g over temporal boundaries;
gu ilt th at `se lf-tim e’ c ould be v iew ed as `sel® sh tim e’ , an d a fear of av aila ble tim e as
a diminishin g resou rce sig ni® e d th e ext ent to which they re cognis ed the stan dards o f
paren thood, and its te mp oral an d sym bolic p rop erties .
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398 S. Tod d & J. Shea rn
The service w orld d id not ap pe ar to dis tin guish b etween the `paren t’ and the
`pe rso n ’ , t hat is p are nt s w e re typ ica lly n ot re co gn ise d as ha vin g a life o ut sid e of the
co nte xt o f their pare nta l ident ities. F or th os e pa ren ts w ho , pe rhaps ten tat ive ly, s till
he ld as pirations for greater invo lvement b eyond this role, it w as clear t hat t he
services they re ceived did n ot af® r m p are nts’ view s of them selve s as p ers ons. T he
support s ervice s they re ceived seemed unab le to tolerate th eir d em an ds for a lif e
ou tside of par enting. In deed, t he o nly paren ts w ho felt t hat the s up port they re ceived
was ad equate w ere thos e pa rents w ho had relinq uishe d, for w hatev er reason,
aspiratio ns fo r pe rso nal ful® lm ent ou tside of p arenting. W e sugg est t hat s uch data
im p ly the ne ed to e xam in e th e i mp a ct of sup p ort se rv ice s fro m a dif fer en t ana ly tic al
pe rsp ective , from one whic h sees respit e as u ndiffe ren tiated in tim e an d pu rp ose and
as un qu estion ing ly a po sit ive in¯ uen ce, for one wh ich is sensitive to th e m eanings
paren ts deriv e fro m the interact ion betw ee n age a nd b iog rap hy ( see , for exam ple,
Todd & Sh earn, 1 996).
The d ata sugge st that m o the rs in pa rticular felt th at their lives had been
cu rtailed an d that th is ca n be seen as an outco me of the forcef ul ideology of
moth erh oo d, a n id eology wh ich d e® n es the diffe ren tia l salien ce m other s should
att ac h to v ar iou s d im en s ion s of th e se lf (D e la m on t, 19 89 ; U ng er & C r aw fo rd ,
1990) . It appe ars that is m ore sev erely and e nduringly app lie d to m o the rs of children
with learning disab ilit ies than it is to oth er moth ers . It shou ld be b orn e in mind ,
ho we ver, that th e st udy wa s ba sed on ly th ose paren ts w ho ha d m ain taine d, fo r
whate ve r reas on , a dire ct involvem ent in the parent al role. It would be of so me
interest to use the ideas g en era ted in this p aper to exam ine the ext ent to whic h
paren ts w ho ha d re lin qu ished this dir ect role, m ay h ave ha d differen t experien ces of
an d s tra teg ie s fo r m an ag in g to m ai nta in , an d f oll ow th ro ug h t he ir c om m itm e nt t o
no n-parental ro les and in d ealing w ith the felt id eo log ical con strain ts en countere d by
paren ts in th is study.
We recognise als o, as n oted in the introd uction, th at we hav e sa id litt le about
ho w p arent al p rac tic es migh t re¯ ect back up on th eir offsprin g, a to pic w e have
ela bo rated u po n elsewhere (Todd & S he arn , un de r review). In th is paper, w e have
so ugh t to look beyo nd the con® n es of parentho od t o loo k at its wide r social c ontex t:
at how pa rents had or still attempte d to tra ns cend the narrow con® ne s of `perpetua l
pa re nth o od ’ an d to tr ace h ow tim e op er ate s as a s ign i® ca nt d im e ns ion in t he l ive s
of p are nts. W hile t he d ata rev eal that parents view ed their res ponsibilities as
preve nting g reater particip ation in a life beyon d parenting, it wa s the lack o f
leg itim a tion others provid ed for such lifes tyles which pre vente d them follo wing
throu gh their ow n p ers on al in terests. F urthe rm ore , it is wo rth n ot ing that m an y of
the conce pts we h ave u sed to analyse t he e xperie nc es of parents, such a s
`bio gr ap hi cal d isru pt ion ’ ( B ury , 1 9 82) an d `los s o f s elf ’ (C h arm a z, 19 83) h av e b ee n
bo rro we d from a literature o n th e experien ces of people w ith dis ability. That t here
exists som e similarity of expe riences provide s a basis fo r de velop ing an age nda of
sh ared iss ue s for parents an d peop le w ith learnin g disab ilities rath er th an the mo re
us ual situa tio n wh ere t he dif® cultie s on e party e ncoun ters tends t o be attrib uted to
the other.
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St ru gg le s w ith T im e 399
A ck no wl ed ge m en ts
This rese arc h w as conduc ted under a gra nt f rom the W els h Of® ce/De partm en t of
Healt h. W e w ou ld lik e to than k th e paren ts fo r their c o-o pe ration and considerable
tim e i nv es tm en t.
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