reframing the meaning of disability to families: the embrace of paradox

REFRAMING THE MEANING OF DISABILITY TO

FAMILIES: THE EMBRACE OF PARADOX

ELIZABETH LARSON

Private Practice, Los Angeles, CA 90032, U.S.A.

AbstractÐIn our society, families turn to medical science and health practitioners for assistance when afamily member becomes disabled. In the cases of chronic illnesses and developmental disabilities, healthprofessionals may focus interventions on the disease processes, feeling unprepared to deal with thebroader issues families struggle with in managing disability. In addition, collaboration between pro-fessionals and parents may be strained when family's discourse is viewed as unrealistic, overly emotion-al, exceedingly optimistic and confusing by professionals. Using in-depth case studies, this qualitativeresearch examined the daily occupations and subjective well-being of six Mexican-origin mothers par-enting children with disabilities. Emergent ®ndings demonstrated that these mothers do express appar-ently contradictory emotions of grief and joy, hope and fear that in¯uenced their subjective well-being.The meaning of the mothers' contrary statements was illuminated in a life metaphor, the embrace ofparadox. The embrace of paradox was the management of the internal tension of opposing forcesbetween loving the child as he or she was and wanting to erase the disability, between dealing with theincurability while pursuing solutions and between maintaining hopefulness for the child's future whilebeing given negative information and battling their own fears. The tensions created by the paradox pro-moted an internal striving to maintain a tenuous hopefulness despite ``crashes'' in their maternal work,and promoted an extension of maternal skills working toward a hopeful life trajectory for the motherand her child. In the embrace of paradox mothers created a positive bias and regained a sense of con-trol that fueled their optimism in maternal work. # 1998 Elsevier Science Ltd. All rights reserved

Key wordsÐdisability, occupation, parent-professional collaboration

INTRODUCTION

The acquisition or onset of a disability by a family

intrudes on a family's life blueprint. It drives the

family to make sense of this accidental occurrence

and to rede®ne their collective goals, life circum-

stances, the meaning of life and the identity of the

a�ected family member. The advent of disability

compels the family to seek solutions and cures to

remedy this unfortunate occurrence. ``Lacking gen-

erally agreed-upon authorization for how to inter-

pret misfortune, there is a de®nite tendency in the

contemporary world to medicalize such problems

and therewith to turn to the cultural authority of

health professions and science for an answer to our

predicament'' (Kleinman, 1988, p. 28).

Medical science has risen repeatedly to the chal-

lenge to vanquish crippling and devastating diseases

such as polio or small pox, to name a few, freeing

us from fear and allowing countless children to live

healthier lives. However despite our national ``can

do'' credo that suggests no obstacle is unsurmoun-

table, in medicine there remain diseases which are

incurable though often manageable by interventions

that diminish but do not eliminate their impact

(Zola, 1982). This is especially true of conditions

that a�ect the development of children such as cer-

ebral palsy, spina bi®da, autism, congenital con-

ditions, traumatic injuries and developmental delays

of idiopathic origins. In these cases, health pro-

fessionals cannot o�er ``cures'' but therapeutic

interventions to ameliorate symptoms and foster

development.

Health professionals, despite their professions,

may feel unable to fully meet the needs of families

and their children with ongoing disability and may

harbor some of the same prejudices about disability

that are prevalent in the mainstream society (Evans,

1989). Zola (1982) suggested, in losing the battle to

save and cure, that anger at the disease may spill

over onto the bearer of the illness who represents

medical failure. ``In this context, the [ . . . ] handi-

capped become objects, permanent reminders of a

lost and loving struggle, symbols of past and conti-

nuing failure'' (Zola, 1982, p. 201). This view is bol-

stered by remnants of past philosophies which

viewed illness as God's will and a punishment for

failings.

The ®rst questions that come to mind when a

stranger meets or a health professional interviews

the individual with disability or their family often

revolve around ``How did this happen?'' and by im-

plication ``Who is responsible?''. The stranger may

be curious, whereas the health professional seeks

clues to understand the disability's precursors and

the disability itself, aiming to clarify the manifes-

tation of the disease or disability. Research has

documented how often families and individuals also

Soc. Sci. Med. Vol. 47, No. 7, pp. 865±875, 1998# 1998 Elsevier Science Ltd. All rights reserved

Printed in Great Britain0277-9536/98 $19.00+0.00

PII: S0277-9536(98)00113-0

865

mull over the question ``Why me?'' (or why us?)

when confronted with the news of an illness or dis-ability (Shapp et al., 1992). This query by all cul-tural members is morally value-laden with cultural

expectations about the cause and responsibility ofillness and disability.Often physicians and health professionals will

recast the illness or disability into issues with whichthey can manage, limiting the scope to narrower

issues rather than considering the patient's experi-ence (Kleinman, 1988). Since most diseases are self-terminating (Dubos, 1979), providing good care

leads to satisfactory outcomes for both the healthcare provider and client. Yet in the case of chronicdisease, ongoing management of only the indivi-

dual's disease process may actually con¯ict with thefamily's attempts to care over the long term for the

member with disability (Kleinman, 1988).Health care providers and families managing the

care of a disabled member sometimes have con¯ict-

ing perspectives in de®ning the presenting problemsor the essential treatment priorities (Van Riper etal., 1992). For the majority of individuals with dis-

abilities and their families, the individual's medicalstatus is one part of their ongoing problems. Gill

(1991) suggests that a large portion of the di�cul-ties revolve around social and emotional issues sur-rounding disability in which health professionals

may feel ill equipped to guide families (Van Riperet al., 1992).Family members of individuals with disabilities

have even been viewed as part of the problem(D'Alonzo, 1982; Patterson, 1991) or as an ad-

ditional di�culty (Ogden Burke et al., 1991).Attitudes such as this may emerge from beliefs thatthe family bears some responsibility for the disabil-

ity, especially in the case of congenital handicaps(Vosey, 1972; Tunali and Power, 1993) or due tothe family's perceived incompetence as caretakers

when they fail to follow medical advice (Lester,1984). The powerful emotional responses that

emerge during and throughout intervention maylead to families being characterized as overlyemotional and therefore unable to comprehend in-

formation or make reasonable decisions (Bryantand Hirschberg, 1961; McGown and Braithwaite,1992; Van Riper et al., 1992). In this case the

family's collaborative role in decision making maybe peripheral, lesser or even adversarial (McBride et

al., 1993; McLaughlin and Carey, 1993). The judge-ment of family members is also called into questionwhen they make statements that are felt by pro-

fessionals to be unrealistic expressing either extremeoptimism or pessimism, failing to truly understandthe impact of their family member's disability

(Vosey, 1972; McLaughlin and Carey, 1993). In thissense family's hopes for cures are viewed as enga-ging in magical and unproductive thinking (Hulnick

and Hulnick, 1989). Overall, families including adisabled member are often viewed as having more

di�culty coping with daily life (Widerstrom andDudley-Marling, 1986) and as experiencing ongoing

or periodic stress and depression (Friedrich andFriedrich, 1981; Beckman, 1991; Wikler et al., 1983;McCollum, 1984; Pueschel, 1986; Fajardo, 1987;

Harris, 1987; Hanson and Hanline, 1990).Yet narratives demonstrating the family's per-

spective often recount their ba�ement and frustra-

tion at how they are characterized by thepractitioners in the health care system who arethere to help them. They frequently describe

encountering misunderstandings, obstacles andinsensitivities when they pursue diagnostic andprognostic information and try to locate suitablehabilitative, remedial and compensatory services

for their children with disabilities (Riniker, 1984;Mullins, 1987; Van Riper et al., 1992). Consider thefollowing two narratives. This ®rst narrative encom-

passes one mother's and father's encounter witha clinic when they sought help for their youngdaughter with autism:

We got o� easy. The professionals had neither praised norblamed us and they had done their best to say nothing dis-couraging about Elly [ . . . ] We had gone in with expec-tations that, to those with no experience of the ®eld willnot seem unreasonable. We expected to talk with wise andsympathetic people, wise because of a wide experiencewith sick children, sympathetic because it was their voca-tion to help those in trouble [ . . . ] We were amateurs.They were professionals. But we had, we thought, a com-mon task. Unconsciously we expected to be welcomed, notas patients, but as collaborators in the work of restoringthis small, ¯awed spirit. We were doing something terriblyhard and we had been doing it quite alone [ . . . ] Wewanted information and techniques. We wanted sympathy,not the soppy kind; we were grown-up adults, but someevidence of fellow feeling, which ordinary doctors givereadily enough. And, was it so unreasonable?, we wanteda little reassurance, a little recognition, a little praise. Itnever occurred to us that these expectations were naive,that the gulf between parent and ministering institutionmust deliberately be kept unbridgeable by any of theordinary techniques of interpersonal relations [ . . . ] But[ . . . ] Their system made it so (Park, 1982, pp. 142±143).

This second account describes another set ofparents' discovery that they too were assessed whenseeking diagnostic services for their four-year-olddaughter:

When the psychologist's report arrived, we met again withour pediatrician. He showed us the report; it con®rmedwhat we suspected all along. Debbie was at least eighteenmonths to two years behind her peers, intellectually [ . . . ]The report also said that, in the opinion of the psycho-logist, my wife, Barbara, was having a di�cult time``accepting'' Debbie's mental retardation and that she wasbeing ``overly-protective.'' It's odd, but it wasn't until thatmoment that Barb and I both realized that we were beingtested too. There was no mention of me in the report; itwas almost as if I hadn't been there. To this day, I can'timagine what she said wrong and what I said right [ . . . ]You might wonder why our pediatrician shared thesereports with us, particularly those aspects so damaging tomy wife's ego. He did so, he said, because ®rst, we had aright to know and second, in his opinion, we were bothaccepting Debbie's condition remarkably well. Boy, did Ihave him fooled (Yockey, 1983, p. 30 and p. 34).

E. Larson866

In addition to feeling that they too had becomepatients in the system, parents also described the

need to become adversarial or ``di�cult'' with ser-vice providers in order to obtain desired services fortheir child. Riniker (1984, p. 22), after portraying

the family's struggle to ®nd an educational place-ment for her son with a complex and unique set ofspecial needs that did not ®t in any available edu-

cational setting, continued by describing the tollthis has taken on the family:

In the last three years, we have made more enemies andestablished more friendships than we did in the ®rst thirtyyears of our lives. I guess that is an indication that we arealive, really alive and willing to risk ego, money and peaceof mind. If I were to give parents one word of advice itwould be to know what you can and cannot live with. Donot let anyone tell you that there is only one way to dosomething, their way. We have the right and ability tomake the choices that a�ect our lives. After all, we are theones who live with the results.

Although all of these narratives are from an ear-lier decade, recent parent narratives re¯ect similardi�culties with feeling misunderstood, being per-ceived as an adversary rather than a collaborator

and having to grapple with more powerful healthcare providers to achieve family goals (OgdenBurke et al., 1991; Marsh, 1995; Meyer, 1995;

Sullivan, 1995).From both the practitioners and parents' view,

the collaborative relationship can be problematic.

Underneath the surface of parent professional col-laborations there appears to be an undiscoveredundercurrent of unspoken beliefs, thoughts and

values that pervade these interactions. Practitioners'discourse about parents frequently centers on issuessuch as acceptance, denial, overprotectiveness,under-expectations and wishes for miraculous cures

and the repercussions of these issues on servicedelivery. Parents, however, feel they come to thehealth care system with reasonable requests, looking

for assistance to, as Park (1982, p. 142) put it, torestore ``this small, ¯awed spirit'' of their child.The study presented here examined the lives,

daily occupations, and well-being of a group ofMexican-origin mothers parenting children with dis-abilities and living at or near poverty level con-ditions. Occupation is used here in the broadest

sense of the word to describe ``chunks of culturallyand personally de®ned activity in which humansengage'' (Clark et al., 1991).

In the current political climate in California,people of Mexican-origin, especially undocumentedimmigrants, ®nd themselves at the center of a grow-

ing debate about their ability to contribute ratherthan take from society (especially when they requirehealth care services). Although at the current

growth rate Latinos will soon be the largest min-ority in Los Angeles and the United States, they areonly just beginning to amass political clout thatmay counter their limited access to health care ser-

vices and their perceived status as ``others''unworthy of education and medical services

(Chavez, 1992; Hayes-Bautista and Rodriguez,1996). Unfortunately in the current debate, a cleardistinction is not always being made between legal

and undocumented residents and both may experi-ence the current political backlash in their dailylives (Moore and Panchon, 1985). In order to

engage in their maternal work of maintaining theirchildren's health, promoting development, andensuring their child's place as a member of society

(Ruddick, 1989), these Mexican-origin mothersoften experience con¯ict in gaining access and navi-gating educational and service systems that areovertaxed and unconcerned about their personal

views, maternal and cultural values (Los AngelesRoundtable for Children, 1988; Mercer andChavez, 1989). This research project clari®ed a fre-

quent source of discord between health care provi-ders and these Mexican-origin mothers byilluminating the meaning of the mother's contrary

statements and actions which are often viewed asmisguided.

METHOD

Six Mexican-origin mothers, selected on theoreti-

cal considerations, participated in in-depth case stu-dies focusing on the subjective well-being and dailyoccupations of mothers parenting ``high burden''

children with disabilities. Selection was balanced onfactors of generation of residency, ®rst language(Spanish/English) and apparent family functioning.

Mothers were ®rst or second generation residents ofthe United States with three being undocumentedimmigrants, one a legal resident and two citizens.High burden was de®ned from the literature as chil-

dren having a combination of the following charac-teristics: limited or absent self-care skills, severecognitive disabilities, physical impairments, bowel

and bladder problems, impaired communicationskills or severe behavior problems (Breslau et al.,1982; Gallagher et al., 1983; Smith, 1986; Friedrich

et al., 1987; Frey et al., 1989; Beckman, 1991;Floyd and Zmick, 1991).In-depth case studies consisted of a series of three

to six interviews and a day long participant obser-

vation in the home. A minimum of 22 hours ofdata was collected with each informant. Field notesfrom interviews included documentation about the

home environment, context of the interview andinterpersonal interactions, and from the day longobservation included the mother's child care rou-

tine, daily rounds of activities, relevant householdand community factors, the sequence of events andthe amount of time spent in each occupation.

The study design included an initial interviewusing an interview guide generated from a review ofthe literature on maternal well-being when parent-ing a child with disability. For the second interview,

The meaning of disability to families 867

a second interview guide which was re¯exively gen-erated following the initial interviews and two scales

(Hassle Scale and well-being scale) were used asinterview probes to gain additional information(Kanner et al., 1981; Juster et al., 1988). Following

the completion of questions from these two guidesand scales, a day long observation was scheduledwith each informant. After this, a ®nal interview

probed remaining unanswered or unclear pointsfrom the previous interviews and from the obser-vation. Additional interviews were conducted until

all interview guide questions were exhausted.A native Spanish speaking translator who was

briefed on interview techniques and qualitativemethods was present for Spanish speaking mothers'

interviews and observations. Interviews were tran-scribed in English or Spanish and English depend-ing upon the mother's ®rst language. In addition,

the transcriptions of spoken Spanish were translatedand included in interview transcripts. The ®nalSpanish/English transcriptions were reviewed by

four di�erent bilingual readers who judged thequality of translation and found no systematic pro-blems. Data analysis included theoretical notes

generated during transcriptions that identi®ed sig-ni®cant themes and additional points of inquiry,line by line coding of transcripts, theoretical sortingof codes and regrouping, recoding and theory con-

struction. Member checking was used to critiqueand con®rm ®ndings.

BRIEF BACKGROUND OF INFORMANTS

The mothers participating in this study were 27±42 years of age; with educational attainments vary-ing from ninth grade education to graduate degrees(two completed less than high school, three had

some college or vocational training and one was aphysician with a master's degree from a Mexicanuniversity). The study participants had two to ®ve

children, with family incomes ranging from $1000to $1909 monthly (in 1994). All six worked ashomemakers, and four were also employed outside

the home during the study. All also resided in pre-dominantly Latino areas of Los Angeles. Thenames of mothers and children used here are pseu-

donyms to protect their identities.Their children with disabilities were between 5±

11 years of age and experienced the onset of disabil-ity between birth and three years of age. Three had

diagnoses of cerebral palsy-spastic quadraparesis;one, spastic quadraparesis; one, blindness and glo-

bal developmental delay and one, high functioningautism. Four attended a classroom for severely han-

dicapped students, one had a home school programand one attended a regular education class.

FINDINGS

The initial focus of this study was the daily occu-pations and well-being of mothers parenting chil-

dren with high burden disabilities. The intentionwas to study the extreme case of mothers who ex-perienced heavy caretaking burdens and therefore

experienced constraints and limited choices in dailyrounds which was intuited to a�ect subjective well-being (Reich and Zautra, 1983). Frequently duringthe interviews, mothers were compelled to share

mother±child histories in order to explain their cur-rent life occupations. In addition, emergent ®ndingssuggested that mothers linked their own subjective

well-being with their feelings of success in mother-ing and their child's progress. This consistent link-ing of maternal well-being and successfulness in

mothering led to an examination of a set of narra-tives that embodied both the obvious and subtlecontradictoriness of the mother's statements about

her child, maternal work and subjective well-being.

Acceptance and denial

In a recursive turn, this research returned to the

practice puzzle elaborated in the introduction.Under careful scrutiny, it becomes apparent thatblanket terms used by health professionals such as

acceptance, and denial do not clearly capture themother's emotional processes in parenting a childwith disability. The mother's acceptance of the

child's disability is often viewed as a ®rst step in ahealing process, as described by professionals. Yetacceptance, as borrowed from the conceptualization

of KuÈ bler-Ross (1969) of the stages of grieving,may not be accurate in this instance where insteadof a certain future, mothers face an indeterminatefuture for their child with disability.

In this study, mothers said complicated thingslinking their children, maternal work and maternalsubjective well-being that merited a reexamination.

In this account Mariza illustrates an apparent con-¯icted and uneven ``acceptance'' of the future pro-spects for her ten-year-old daughter who has severe

disabilities.

Well, the di�cult thing is that you always want your childto be normal, to be [ . . . ] your dream is you know, to seethem running around and maybe be normal. That's thedi�cult part, because you know in your heart that youcan't, that you're never gonna see that. I don't know [ . . . ]I know she'll probably walk. I don't know when, but Iknow, I know that is my dream to see her walk. But Iknow she is not going to be able to see, she's alwaysgonna be blind. But she, even though she walks, she's notgoing to be a normal one, one of them*.

Jescuita's narrative appears to embody both denialand realism when speaking about her ten-year-old

*Quotations are verbatim from transcribed English andSpanish-translated transcripts of interviews. Bracketedinformation and narrative smoothing was used to clar-ify referents and meaning. Spanish translations weresmoothed by the translator for grammatical errors.Omitted phrases or words in quotations are marked asthree periods (...).

E. Larson868

daughter who developed spastic quadraparesis fol-lowing a febrile seizure at age three:

I had for the longest time [ . . . ] I was living with thisdream that she's just gonna jump o� that (wheel) chair[ . . . ] and go about her business. You know and I'm verypatient [ . . . ] and I keep on [ . . . ] well it's gonna happen.And now, now I'm convinced its not gonna be quite thatway. It's gonna to be a lot of little steps before that.

Lastly, Consuelo, though acutely aware of her son'slimited prognosis due to her own medical training,still describes the great lengths she would go to help

her eleven-year-old son:

But I am not resigned at this moment and if I knew thatthere is something on the moon to change my son's [con-dition] and I had to go nose ®rst from here to the moon, Iwould take Miguel and nose ®rst I would go.

In Mariza's case her `àcceptance'' of her daugh-

ter's disability seems to have subtle shades andvariations that could not easily be characterized asfully accepting or denying the disability. Likewise

Jesucita's comments suggest a subtle shifting``realism'' about her daughter's recovery. Finally,Consuelo's narrative speaks to the tenacity and resi-lience in solution seeking that counters resignation.

In linking their well-being with their child,mothers placed themselves in a precarious and di�-cult position. Certainly by ordinary standards, this

group of mothers could not claim ``success'' inmothering by raising future productive citizens. Bythe description of Ruddick (1989), much of these

mother's maternal work focused on sustaining theirchild, and fostering development, with much lesssuccess in training them for future social partici-pation. These mothers gauged their success by the

children's health, contentedness and progress whichin turn impacted their own well-being. Yet for chil-dren with severe disabilities, like those in this

sample, the success of mothers was limited by thevery real parameters of the child's disability. Howthen did mothers reconcile their need to be success-

ful mothers with the con®nes of parenting a depen-dent child who may never achieve `ìndependence''or social productivity?

De®nitive diagnoses vs the `èmbrace of paradox''

Mothers recounted how some doctors limited bytime and opportunity did not appreciate the child's

unique personhood (Featherstone, 1980) insteadrelegating the children to diagnostic categories withdreary developmental futures. The mothers' view of

their children's development was sometimes con-trary to the common sense conclusions of phys-icians and health care providers (and society in

general) who although they provided service tothese individuals sometimes also inferred a devalua-tion of these individuals with disabilities by their in-

teractions, comments and attitudes. These childrendid not ®t the ideal of healthy bodies and keenminds but were instead not viewed as fully human(Gliedman and Roth, 1980; Peters, 1993). Although

not intending to, the mothers often felt that thedoctor's comments were impersonal and failed to

respect their child's humanity. Consider Consuelo'sand Mariza's encounter with these physicians.

I would like for him to really take his time to evaluatehim orthopedically [ . . . ] to sit him up, to touch him, toreally notice what is happening. He only looks him over. Ido not know. I believe he spends more time choosing ashirt he is going to buy or a pair of shoes than the time hespends on Miguel [ . . . ] Why doesn't he take the time toexamine my son and give him quality care? I do not doubthis capacity as a doctor, as a specialist, but I sometimesdoubt his humane quali®cations.

He said all this therapy is not going to work. Your daugh-ter's never going to walk. Just straight out [ . . . ] I hatedhim [ . . . ] ``Didn't you have another way to tell me thatmy daughter's going to be in a wheelchair?''

The health professionals' predictions not only rancounter to the mother's hopes for her child but alsoto her valuing of her child as a warm loving human

being. While the mothers used the health pro-fessionals' predictions to temper or revise their viewof future possibilities, sustaining hope in the face of

negative proclamations was tenuous but essentialfor these mothers in their maternal work. Jesucitapointed this out: `Ìt was really scary. I really felt

like I had to gear myself up [that] no matter whatthey tell me I wasn't going to collapse and I wasn'tgoing to give up.''Taking the doctor's diagnosis into consideration,

the mothers expressed a duality in their emotionalpositions regarding motherhood. Here are twoexamples of such contrary narratives that illustrated

this con¯ict. Both of these mothers were respondingto questions about their well-being. First Consuelo:

I am not happy because [ . . . ] I believe the hardest thing ishaving a son with a problem I know that I can neversolve. [But on the other hand] I am at peace, I am contentwith my son because with the limitations he has I havelearned to know him, to love him and to understand anew way of living.

And Mariana:

In that respect, I feel very content, because that, morethan anything, is what I have tried to achieve. For [myhusband] to feel comfortable at home together with mychildren. I feel happy when I am able to give my childrenwhat they ask me. For them to have what I did not have,I feel happy. But I cannot be the same person as before[my son was born]. Not anymore, I became sad. Sadbecause we have not overcome the boy's problem. I can-not live happily.

Over and over again, when asked what wouldimprove their well-being, all of these mothers

wished for miraculous cures, that the child wouldwalk and talk, that the child would be normal. Yet,at the same time, they expressed a deep love and

a�ection for the children just as they were.Consuelo talked endearingly of Miguel, speakingseparately of her feeling about his disability.

I really like being a mother. I love my son [ . . . ] I do notlike the situation he is in. I would have preferred for my


son not to be handicapped. Despite what he is, I love himso. It is good I had him because he has taught me manythings.

Mariana also talked tenderly about Carlos, inspite of his cerebral palsy.

Because despite it all, the boy is not as ill as other children[ . . . ] We love the way our son is, we are going to accepthim and we are going to love him.

When analyzing these quotations in the context

of subjective well-being, there appeared to be acontradiction. While embracing their child despitethe disability, the mother simultaneously rejected

the limitations of the disability, continuing to aspireto more typical mothering, holding in mind twoopposing thoughts about the child. This may be

similar to what one father described as an`èmotional cross current'', an emotional oscillationbetween extremes, occurring in the same moment in

time (Kappes, 1995).Even as these mothers went through a reconcilia-

tion process with their family and developed socialrelationships which made the child's disability less

of a crisis or problematic event, they still wishedthat the child could walk and talk and gainindependence as any child would. It may be that

rather than perceiving the mothers as `ùnrealistic''about their child's abilities, since ironically theycare take for the child daily and know the child's

limitations better than anyone, professionals mayneed to see them as managing a set of disparateemotions.

Part of understanding and clarifying this disparityor contradiction was naming it. In searching for aname that described the complexity of this thing,aid was found in an unlikely source, a play about a

Chinese girl's youth. The main character relates, `Ìlearned to make my mind large, as the universe islarge, so that there is room for paradoxes''

(Kingston, 1990, p. 29).This paradox, both an embrace of the dis-

abled child as they are while clinging to a desire

for change, seems to clearly capture the confusingstatements which parents make regarding theirchildren. Comprehending this paradox deepensthe understanding of the parent-professional con-

troversy over what `àcceptance'' really means. Theword paradox is de®ned as a ``tenet contrary toreceived opinion,'' `à statement that is seemingly

contradictory or opposed to common sense andyet is perhaps true'' or `àn argument thatapparently derives self-contradictory conclusions

by valid deduction from acceptable premises''(Webster's New Collegiate Dictionary, 1977). Incoping with these seemingly incompatible stances,

parents may be viewed as embracers of a paradox.The authenticity of this metaphor, the embrace of

paradox, for mothers of children with disabilities iscon®rmed by a mother's narrative from a book

called From the Heart in which the author demon-strates the features of this metaphor:

Yet, while I grieve, I also hold deep love and joy forJessica, knowing that she is perfect just the way she is. Itis such a paradox. I am ®nally learning to embrace thisparadox of joy and grief that I will always hold, ratherthan telling myself that I shouldn't feel this way. It's justthe way it is. But tonight I will cry my sad tears. Thentomorrow, I'll continue on (Marsh, 1995, p. 127).

The embrace of paradox has several features:holding two oppositional thoughts about the child,

loving the child yet wanting to erase the disability,hoping contrary to the received opinion of othersand recognizing there was no cure all the while

seeking solutions to ongoing problems.

Predictions for trajectory of care

Physicians combine their diagnostic skills with

their knowledge of the disease process to project aprobable course for the speci®c individual (Corbinand Strauss, 1988). Through their own experiencein medical management of multiple childrens' dis-

abilities, physicians often make educated prognosti-cations about the child's future development aimedat guiding parents' expectations.

In this study, the recommendations of health pro-fessionals sometimes suggested that mothers shouldnot be too optimistic and if they were, it was

suggested that they were in fact being unrealisticabout their child's future. Although doctors did notalways accurately predict what this future would be,

early prognostications often suggested a ``®xed''and devastating developmental trajectory, that thechildren would never walk or talk.Later on these earlier perceived inaccurate or

extreme forecasts about their child led mothers toview new prognostic predictions cautiously and tosometimes discount information contrary to their

optimistic stance. The diagnosing physician toldMariana when Carlos was six months old that hewould never walk or talk. Later another doctor was

amazed by the boy's emerging speech and walkingskills.

But [the second] doctor did not believe that he woulddevelop because he was in DH [a classroom for the mostseverely handicapped students]. The doctor was verysurprised [ . . . ] to see Carlos' progress. He said it is notoften you see this. And when he said that I said, ``No,huh?''.

For the child with the mildest disability by

comparison, high-functioning autism as evidencedin severe aggressive behavior, the mother did notconcur with her doctor's initial assessment, that

Andrew was quite normal and that there wereno grounds for concern. A little while later thedoctor agreed and sent the child for tests. `Ì took

him when he was a year and three months old andI told him that I noticed something strange in him[ . . . ] He said, `Give him time, you are too hastyto hear him talk' ''. One mother, who visited the

E. Larson870

same neurologist over a number of years, queriedthe doctor about giving out pessimistic consul-

tations:

I said, why did he have that kind of attitude like this,giving us the worst possible information possible. And hesaid they have to do that because of the liability. Theyreally can't give parents too much hope. Because theythemselves do not know what's gonna happen.

These mothers, despite being viewed as quite

unrealistic, were aware of their child's limitationsand assets. Sometimes they compared their child toothers with disabilities and counted their blessings

that their child was not as disabled as other chil-dren. First, Marta talked about the pluses she seesin Rachel.

Her disability is not [ . . . ] so severe like that of otherchildren because [ . . . ] she does not have any deformities[ . . . ] and her head well, as a mother I have to see thingsin a positive way.

Mariana talked of being realistic about Carlos'disability only as she also committed to movingahead. `Ì feel I need to accept my son's problem

and continue to go forward in this. I have to thinkpositively to get my children ahead [ . . . ] I amrealistic.'' Juliana showed the tension between the

permanence of Andrew's autism and her desires forhim. Being unable to make the disability go away,she planned to circumvent it by transforming

Andrew.

I say `Ì cannot change it [the autism] anyway. If I couldchange it ®ne, but it cannot be changed.'' So, what I coulddo [ . . . ] instead of thinking ``How am I going to changehim?'', [I think,] ``How am I going to ®ght to transformthis person the way I want?''. I [still] get very upset but Ialso think about what I will do tomorrow.

Lastly, Consuelo tempered her hopes by recogniz-

ing the di�erence between her dream and herconscious thoughts about Miguel.

I do not see him recuperated and I do not think he will.Although I dream, many times, of him running and walk-ing [ . . . ] I dream of him being a normal boy. When Ithink consciously I do not think of him being well [ . . . ]but I do see him being a little more normal several yearsfrom now.

These `èmbracers of paradox'' experienced atension between their child's current circumstancesand their hope and desires for the future. This

tension became a driving force which energizedthe mothers to seek solutions, orchestrate dailyroutines, ®nd programs and search for answers for

their child's sake. The energy behind their maternalwork was this paradox, understanding the impairedcondition of their child and yet fully embracing a

more hopeful future as well as guarding against apainful one. This `èmbrace of paradox'' was a ten-uous balance which mothers struck between their

desires and the disillusioning predictions of healthprofessionals and their own fears. Rather thanbeing a ®nal resolution or acceptance of the child'sdisability, this embrace of paradox was a tenuous

emotional compromise that could be battered by

instances where the mother's maternal aims were

stymied.

By examining two de®nitions of the word

tension, the way in which the paradox serves as the

primary driver of maternal occupations is made

clearer. The ®rst de®nition of tension is an inner

striving or imbalance accompanied by emotion

(Webster's New Collegiate Dictionary, 1977). In

embracing the paradox of their child's disability,

mothers attempted to maintain a tenuous hopeful-

ness, somewhere between their fears that the

doctors were correct and their hope for a miracu-

lous cure.

Confronted with outside pessimism, as well as

their own fears, mothers were often initially im-

mobilized by the knowledge that their child has a

disability. This initial ``crash'' was followed by an

ongoing series of ``crashes'' from which they

``bounce back.'' In the words of one mother: `Ìt is

as if we are running and we crash into something

like this [clapping her hands] and that makes us

bounce back.'' The ®rst wall they came up against

and which cannot be gone through was often the

knowledge of the disability itself. This wall impeded

their maternal work, serving as a barrier to the ful-

®llment of their previous dreams for the future.

Later, the walls frequently became encounters with

the health care or education system designed to

serve the child. The search for solutions or path-

ways which will foster the child's development,

stretching them to their full potential, may be

smooth, bumpy, or a maze of walled o� and

unclear passages. The mothers recounted how they

encounter obstacles and recovered by ®nding a new

path.

The ongoing random occurrences of ``crashes'' in

maternal work often brie¯y pulled the mothers o�

course, jarring this delicate balance of emotion.

This dislodging of hopefulness, or giving in to her

fears about the child, sometimes caused the mother

to readjust the ultimate vision she held for the child

and to remain steadfast despite the ``crash,'' ulti-

mately allowing her to ``bounce back'' to a revised,

centered, and optimistic position.

Emotions generated through this internal tension

of the embrace of paradox were essential in driv-

ing performance of daily maternal occupations.

Mothers frequently expressed the deep love they

had for their child with disability and drew inter-

connections between their feelings, their maternal

work and their child's progress or di�culties. The

word, emotion comes from movere, to move.

Emotions and feelings moved the mothers to action,

to a response.

Here are some extreme examples, when these

mothers could not manage to keep the balance

tipped toward an optimistic perspective and the

resultant e�ect on occupational engagement. These


narratives describe Mariana, Consuelo and Marta'searly experiences, respectively:

It was very hard for me. I would go on crying, I was noteating, I cried, cried and cried all the time. Until, half mybody went numb and the doctor told me that I was goingto end up worse than my son, that I was going to beuseless, if I could not think about my son, who wouldtake care of him? It was then when I started to accept theproblem.

In the beginning I had some depressing periods. Therewere days when I did not bathe, did not eat, I wouldonly sit there crying with my baby, understanding, whathappened? What happened?

And there were times when [ . . . ] I did cry like that allnight. Now, I think that instead of lamenting saying ahy,ahy. We have to do the maximum, to do everything poss-ible to push the girl ahead.

Here you can see how despair about the child's

disability leads to occupational disengagement.After this initial shock, mothers learned to strike abalance toward hopefulness which could be dis-

lodged by future ``crashes'' or disturbances in theirmaternal work. There are dynamic connectionsbetween the mother's emotions and her occu-pations, despair initially immobilized occupations,

grief turned outward drew the mother to seeksolutions, hard-earned progress brought joy whichencouraged the mother to set her sights higher and

choose new occupations trained at improving thechild's condition further. How well this tensionis managed daily by the mother in¯uences her

occupational engagement.In addition to being pulled between hope and

despair in a given moment by ongoing life circum-

stances, the mother also experienced a temporalpull toward the future which was anchored in thepast. ``Two balancing forces causing extension'' isthe second de®nition of tension which is useful here

(Webster's New Collegiate Dictionary, 1977).Constrained by the child's onset of disability in thepast, the mother now worked toward a hopeful

future for the child. This force pulling the motherforward was the mother's projected life trajectoryfor her and her child (Larson, 1996). The vision she

held for the child's future life, directed the ongoingmaternal work and choices of occupations. The ten-sion between both sets of opposing forces, the pulltoward the future and the limits learned in the past,

along with the o�-centering pulls of crashes andbouncing back, caused the mother to ``extend'' herrepertoire of maternal skills, to broaden her per-

spective on the value of human life and to come toterms with the possibility that powers beyond her-self can determine one's fate. At times these

mothers felt stretched beyond their abilities butbecause of their loving embrace of the child despitethe disability and their maternal values, they contin-

ued to strive to successfully achieve the future theyvisualized, the desired life trajectory.In fully embracing their child despite the dis-

ability, mothers needed to reform and recast their

relationship with their child. Although thesemothers contended that their own subjective well-

being relied heavily on a connection with their childand family, they also recognized that because of thechild's disability the relationship was di�erent from

a typical mother±child one. Unlike typical childrenwho both delight and frustrate their mothers, somechildren with disabilities o�er less positive reinforce-

ment to the mother, unable to delight her by thewonderful unfolding of normal child development,or amuse her with antics. Consuelo, however, noted

that loving a child with a disability opened themother to a purer love. ``It is di�erent when youlove quote unquote, `for nothing in return'. Becauseapparently Miguel does not give me anything [ . . . ]

he does not give us simple pleasures. But what wecannot ®nd in other things we ®nd in him the wayhe is.'' In Uncommon Fathers, Kappes (1995) articu-

lated the complexity of relating, and loving for aparent of a child with a disability:

Disability does not present itself without a set of gifts. Iderive comfort from the thought that it's the sand grainthat seeds the oyster's pearl [ . . . ] and pearls are rareamong oysters! The child with a disability enables, perhapsforces, the family to grow layers of unconditional love,sel¯ess consideration and quiet strength around this unu-sual person. Peering into the crib of a child with disabilityin the predawn moonlight can bring tears of truly uncon-ditional love, love that will not be based on the reportcard performance, scores as a star quarterback or excellentperformance as a trial lawyer. This love is for who the per-son is, for their qualities, their trials and for the innerstrength they must develop to take their place (Kappes,1995, p. 25).

Positive illusions and the embrace of paradox

Within the internal realm, embracing the paradoxof their child's disability was central to a return toa more positive conscious experience of their life.

Although the mothers' optimism about her child'spossible future, despite the disability, has been fre-quently regarded by health professionals as unrea-

listic and detrimental, other research has found thatpositiveness and optimism bolster subjective well-being. Taylor and Brown (1988), for example,

suggest that the constructions of what they term``positive illusions'' have been described as commonacross all individuals and bene®cial to subjectivewell-being.

Taylor and Brown's ``positive illusions'' havethree features which are similar to qualities embo-died in the mothers' embrace of paradox. These are

a positive evaluation of oneself and life circum-stances, a perception of control, and optimism.Through the embrace of paradox, mothers chose to

view their lives positively as long as progress wasmade toward desired goals, sought to manage andcontrol aspects of their lives which they could a�ect

and viewed themselves as capable of a�ecting thischange. All of these strategies and the resultant out-comes were earlier demonstrated to have positivee�ects on maternal subjective well-being. Taylor

E. Larson872

and Brown (1988) suggested that their concept of

positive illusions is health promoting in just thesame way; individuals who hold and believe in posi-tive possibilities in the future are more likely to

engage in care for others, to be motivated in dailytasks, and to be persistent.The embrace of paradox di�ers from positive

illusions but can be illuminated by examining thethree common features of positive evaluation of

one's self and life circumstances, a perception ofcontrol, and optimism. Taylor and Brown (1988)de®ned their term of positive illusions as enduring

patterns of bias that assume a particular direction,with unrealistically perceptions of oneself, exagger-ated perception of control, and unrealistic

optimism. Although not everyone can be aboveaverage, most people tend to emphasize their posi-

tive rather than their negative traits and believe thatthey are doing better than the next person. Themothers in this study, except for Consuelo, noted

how their children were not quite as bad o� asothers or emphasized the positive attributes of theirchild. Such favorable comparisons made with

regard to their children and about themselves werehelpful. Juliana provided an example of this. When

she saw that other mothers with children with moresevere disabilities were coping, she believed that shecould cope too.

The second common feature is a sense of control.These mothers had to grapple with their sense ofcontrol in the non-normative situation of parenting

a child with a disability. The initial loss of a senseof control at their child's diagnosis immobilized the

mothers occupationally and emotionally. Whennegative life circumstances befell the mother orfamily members, powerful emotions were evoked,

upsetting the positiveness with which life was ex-perienced.To reconcile the impact of these events, mothers

appeared to gradually revise and reconstruct themeaning of the event through a rational process

designed to counteract powerful negative emotionsand decrease the diminishing of subjective well-being. Epstein (1994) suggested that by ``making

the unconscious conscious the person is able tobring his or her intelligence to bear on solving theproblems of living'' (Epstein, 1994, p. 717). The

embrace of paradox, loving the child uncondition-ally while wanting to erase the disability and taking

actions toward that aim, and the mothers' positiverevision of initial marital strife following the child'sinitial diagnosis are two examples which demon-

strate this tendency. The mothers' reasoning abouttheir situation lessened the emotional impact thathad resulted in occupational disengagement or lack

of hope that they could do anything which woulde�ect a signi®cant and desired change. Attitudeshifts from despair to optimism fueled the shift

from cessation of occupations, to an active engage-ment in occupations or active reconstruction of

occupational rounds and to a renewed sense of con-trol to address the new challenge.

The third common feature, optimism, energizedthe mother's maternal work and fostered a positiveview of future possibilities. Believing that things

will only improve in the future was related to bettersubjective well-being for these mothers and others(Taylor and Brown, 1988). Conversely, research has

shown that depression has been linked to morebalanced or ``realistic'' assessments of future cir-cumstances (Taylor and Brown, 1988). Although

some of these mothers expressed both optimismand continuing depression, their optimism wasessential for their engagement in maternal work.This was true for these mothers who by embracing

the paradox were able to engage in maternal tasksaimed at bettering their child's circumstances. Thisstudy's ®ndings of the centrality of the embrace of

paradox and it's importance to occupationalengagement in maternal work and subjective well-being are supported by the research of Taylor and

Brown (1988, 1994).Where this metaphor exceeds Taylor and Brown's

``positive illusions'' is in its transforming nature.

The depth and profoundness of coming to termswith the child's disability, through the embrace ofthe paradox, are powerful enough to generate anenduring commitment to maternal occupational

patterns and to generate profound internal spiritualand emotional changes. This soulfulness as a re-sponse to an unexpected life event was alluded to

earlier by a father who discussed how his child'sdisability was like the sand that seeded the oyster'spearl. In embracing the paradox of their child's dis-

ability these mothers attempt to render a disruptionof life into a beautiful pearl and are themselvestransformed through this alchemy to individualswith deep appreciation for the value of all life,

despite the daily struggles.

SUMMARY

Despite what would appear as multiple limi-

tations in their daily lives due to the caretaking of achild with disability, these mothers shared hopefulmaternal visions and profound personal growththat emerged because of this experience. What sur-

faced from the interviews and analysis was a lifemetaphor, the embrace of paradox, that was centralto the mothers' maternal work. The embrace of

paradox was the management of the internal ten-sion of opposing forces between loving the child ashe or she was and wanting to erase the disability,

between dealing with the incurability while pursuingsolutions, and between maintaining hopefulness forthe child's future while being given negative infor-

mation and battling their own fears.Driven by the paradox, mothers proceeded to

overcome a series of obstacles, sustained their ma-ternal work and nourished an optimistic perspective


of mothering her child. Though stymied by``crashes'' where maternal aims were frustrated and

the delicate balance toward optimism was dis-lodged, mothers ``bounced back'' to a revised butstill tenuous position of optimism about the child's

future.The word emotion comes from movere, to move;

these mothers demonstrated the powerfulness of

maternal emotions in fueling the optimism thatallowed them to continue to parent children whorequire extensive caretaking over extended periods

of time. These mothers' perspective of their chil-dren's growth and future development took a muchlonger view than many of the professionals whicheach encountered and though on the surface it

appeared to be kindled by unrealistic premises,understanding the imperativeness of hopefulnesswas essential. These mothers demonstrated the

alchemy of turning an unfortunate life circumstanceinto an opportunity for personal growth (Moore,1992), rejecting what Cousins (1979, p. 133) called

the ultimate tragedy of depersonalization and being``separated from hope.''Robin Rosso, a parent of a child with blindness,

expressed the import of this from the parent'sperspective:

. . . if I could say one thing to doctors, educators and allprofessionals who work with families of children with dis-abilities it's this: they need to know their power and thee�ect their words can have on these families. Predictionsabout the child's future should not be given without greatcircumspection and an extraordinary degree of sensitivityfor the parents' feelings. If parents lose hope, everything islost (Sullivan, 1995, p. 70).

Stephenson (1991) suggested that hope is indeeda prerequisite to coping and adaptation by stimulat-

ing an active process of thinking, feeling, actingwithin one's relationships to achieve a meaningfulful®lling future. By understanding the embrace of

paradox, its link to hope and its impact onmaternal work, health care providers can moree�ectively address the emotional issues surround-

ing disability for families, thereby fostering moreconsumer friendly and supportive interactions withfamilies.

AcknowledgementsÐI thank all the mothers and theirfamilies who willingly shared their stories and gave oftheir time to participate in this study. This study was com-pleted in partial ful®llment of the requirements for theDoctor of Philosophy degree in occupational science atthe University of Southern California.

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reframing the meaning of disability to families: the embrace of paradox

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