From Refrigerator Mothers to Warrior-Heroes: The Cultural Identity Transformation of Mothers Raising Children with Intellectual Disabilities
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From Refrigerator Mothers to Warrior-Heroes:
The Cultural Identity Transformation of Mothers
Raising Children with Intellectual Disabilities
Amy C. Sousa
Boston College
This article examines public performances of mothering children with
intellectual disabilities through thematic discourse analysis of thirty-
three published memoirs. These data reveal presentations of self that,
once consumed and interpreted by public interaction, emerge collec-
tively as a “warrior-hero” identity, a reformulated archetype in the social
construction of a good mother. This archetype places a cultural expec-
tation on mothers to do battle to attain resources and possible cures
for their children, ultimately shifting the historical burden on moth-
ers from causing the intellectual disabilities of their children to curing
them. The article concludes with a discussion of how this hyperfocus
on expert parenting has the potential to leave mothers of children with
intellectual disabilities strained and subject to the pitfalls of systems
of inequality.
Keywords: intellectual disability, mother blame, good mother, heroism,
autism, memoir, identity, thematic discourse analysis
The image of a “good mother” is a socially constructed notion subject to histori-
cal and cultural influences, with a contemporary emphasis on an “intensive moth-
ering” (Hays 1996) paradigm. Under this ideology, today’s American mothers are
expected to devote limitless time, energy, and resources to their children’s develop-
ment while disregarding any self-interest that may conflict with children’s needs and
desires. This article examines a subcategory of contemporary good mother imagery
as viewed through thematic discourse analysis of mothers’ published memoirs of
raising children with intellectual disabilities. In these texts, mothers are presented
as “warrior-heroes” waging battle against social and political forces to gain medical
and educational interventions for their children despite the high personal and finan-
cial costs to themselves and their families.
Direct all correspondence to Amy C. Sousa, Department of Sociology, Boston College, 410 McGuinn
Hall, 140 Commonwealth Avenue, Chestnut Hill, MA 02467; e-mail: sousaam@bc.edu.
Symbolic Interaction, Vol. 34, Issue 2, pp. 220–243, ISSN 0195-6086, electronic ISSN 1533-8665. © 2011 by
the Society for the Study of Symbolic Interaction. All rights reserved. Please direct all requests for permis-
sion to photocopy or reproduce article content through the University of California Press’s Rights and
Permissions website, at http://www.ucpressjournals.com/reprintinfo.asp. DOI: 10.1525/si.2011.34.2.220.
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On the surface, the warrior-hero archetype contrasts starkly with twentieth-cen-
tury portraits of cold, ineffectual “refrigerator mothers” stunting their children’s de-
velopment and doting mothers infantilizing children to the point of disability. Care-
ful examination of the memoirs, however, reveals a less decided departure in the
imagery. Whereas seemingly cold mothers and overbearing caregivers were once
considered responsible for causing their children’s intellectual disabilities, warrior-
hero mothers are now responsible for curing the disability, or at least accessing the
intervention that will mitigate the disability’s impact on their children. The implica-
tion of the warrior-hero archetype is a cultural shift in expectations on mothers of
children with intellectual disabilities, although the updated imagery neither allevi-
ates the social burdens assigned to mothers of children with intellectual disabilities
nor diminishes mothers’ exposure to systems of inequality.
Taken together, these memoirs are cultural texts that speak to the profound pres-
sures placed on women to conform to “good” mothering standards within the con-
text of raising children with intellectual disabilities and offer insight into multiple
relationships that elicit new ways to view motherhood. Finally, analysis of the data
highlights a dialectic process and lexicon, playing out through online consumer book
reviews, used to construct an important aspect of personal identity, which may have
useful implications for theorization within the sociology of knowledge.
PROFESSIONAL REPRESENTATIONS OF MATERNAL IDENTITY
I have failed home birth. I have not been able to give Mark a healthy child. Yes,
I really thought that. Those words were in my head: give him a child. I thought
that he might leave us, two cripples, an embarrassment. Here comes that poor
man, saddled with a gimp lover and a retard son. I know what those feelings are,
they’re internalized oppression (Finger 1990:136).
Conventional wisdom presents images of the good mother as a self-sacrificing
paragon of virtue protecting her vulnerable children from the evils of society
(Thurer 1994; Hays 1996; Landsman 2009). She imbues her children with moral
grounding and sound principles, which, in turn, yield successful, upstanding chil-
dren. The modern dimension of this good mother concept is a normative standard
that obligates mothers to maintain intensive parenting methods on behalf of their
“innocent and priceless” children (Hays 1996:152). In doing so, mothers seek out
professional advice that helps discern the depth and complexity of children’s varied
needs, supplanting mothers’ self-interest in favor of cultural child-rearing values
(Hays 1996). In short, good mothers work hard and access multiple resources to
produce good children.
Of course, the cultural corollary of good mother imagery suggests that bad moth-
ers rear bad children. Like elevated good mother standards, this ideology of blaming
mothers for children’s challenges and poor temperament is a centuries-old concept.
Depictions of mother blame range from ancient portraits of drunken and neglect-
ful mothers to books and fairy tales illustrating maternal victimization of children
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(Thurer 1994). In “Mother-Blaming,” Paula J. Caplan (1998:127) theorizes that the
historical invisibility of mothers’ work has led to society’s devaluation of mothers
generally; however, once mothers’ work is exposed to public scrutiny, it becomes “ac-
ceptable to blame mom” for “being horrible rather than only human.” This exposure
to public scrutiny often comes in the form of expert intervention in the child-rearing
process, including assistance from professionals such as social workers, medical per-
sonnel, psychologists, therapists, and educators, the very people socially mandated to
intervene based on intensive mothering standards.
A historical investigation of medical and popular literature reveals mother blame
is particularly evident in the context of children with intellectual disabilities. In the
nineteenth century, women with limited access to material resources were subject to
social controls such as sterilization and involuntary commitment to prevent the cre-
ation of a new generation of “feebleminded” children (Ferguson 2002; Rafter 2004).
In the twentieth century, medical literature often accused mothers of misplacing
their affection and devotion to the care of disabled children for their own personal
gratification at the expense of their children’s development: “the withdrawal of the
[retarded] child from social contacts to protect him from hurt and the prolonged
infantalization together serve to induce a suffocating atmosphere of self-pity and
overprotection which in turn adds to the retardation” (Howard R. Kelman, quoted
in Brockley 2004:140).
While evidence of mother blame can be found through much historical litera-
ture, the advent of psychoanalysis gave scientific credence to the seemingly causal
relationship between mothers’ parenting and their children’s outcomes (Birns and
Ben-Ner 1988; Ferguson 2002; Grinker 2007). According to psychoanalysts, “good”
mothers rear healthy and emotionally secure children, while those who fail to meet
proscribed standards raise children with psychopathology. This scientific construc-
tion of mother blame is particularly evident in professional inquiries describing the
contribution of cold, insensitive mothers to the atypical development of autistic and
otherwise neurologically different children. Perhaps the most infamous of these re-
ports is The Empty Fortress in which Bruno Bettleheim (1972) compares the symp-
toms of children with autism with those of Nazi concentration camp prisoners, attrib-
uting the similarities to parallels in the living conditions of the two populations. In
his estimation, children with autism are under the vise grip of “refrigerator mothers”
who withhold affection and routinely neglect their children, much like the SS guards
of Nazi Germany. Yet Bettleheim makes no connection between the perceived dis-
tance attributed to be the cause of autism and the cultural imperative for mothers to
avoid spoiling their children by controlling their devotion (Grinker 2007). Thus the
message to mothers is unclear: spoiling a child will engender excessive dependence,
while creating distance will cause autism. In both instances, the scientific community
holds mothers responsible for their children’s atypical development.
While few contemporary professionals adhere to the relic “refrigerator mother”
construction, the vivid imagery is symbolic of both historical and ongoing medical
designations of maternal culpability for many children’s disabilities. Caplan (1998)
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reports that in a study of 125 contemporary articles published in nine different
mental health journals, seventy-two different kinds of problems in offspring, from
schizophrenia to color-blindness, were attributed to mothers’ behavior. Even before
the birth of a child, the medical establishment often assigns maternal accountabil-
ity for childhood disabilities by impugning the age, lifestyle choices, behaviors, and
perceived failings of would-be mothers (Rapp 1999). In an age of prenatal vitamins,
parenting classes, and fetal testing, disability is widely perceived as preventable by
mothers’ resolute adherence to medical direction (Landsman 2009); failure to com-
ply with parenting norms may have grave consequences. This attribution of blame
is continued in the social work and education fields, as insufficient parental involve-
ment in school relationship building is viewed as a substantial cause for children’s
failure to progress in educational settings (e.g., Harry 1992; Eccles and Harold 1993;
Miedel and Reynolds 1999).
Grinker (2007:83) postulates that the result of this intense, professional scrutiny on
motherhood is evident in the “discomfort and guilt” many parents feel about public
presentation of their children with intellectual disabilities and in continued tensions
with medical and educational establishments despite marked advances in theoriza-
tion about family functioning and solidarity within the context of disability (Ferguson
2002). Even today, much of the public discourse about people with disabilities and
their primary caregivers continues to be structured by the medical, educational, legal,
and social work professions, while mothers’ relationships have been “speculative” in
the professional literature (Landsman 2009:85). As one mother wrote:
When we had been given Fred’s diagnosis [intellectual disability with autis-
tic traits] we soon understood that we belonged to a Team. . . . We belonged to
one welfare officer. And one psychologist. We belonged to them, not them to us.
(Deckmar 2005:63)
However, a new literature is emerging to combat the concept of mother blame and
professional domination of the discourse about mothers of children with intellectual
disabilities. Educated, middle-class mothers of children with neurological differences
have authored a multitude of memoirs re-presenting their parental roles as loving, yet
socially and physically burdened caregivers with complex family relationships and te-
nacious advocacy credentials. Most relevant to this analysis, each memoir represents
personal identity formation reclaimed from the medical, psychological, educational,
and social work professions in which mothers give new meaning to raising children
with intellectual disabilities amid an era of social and professional mother blame.
METHODS AND DATA
Autobiographical work is a social endeavor in which the writer tells a story from the
vantage points of personal role negotiation, cultural influences, and perceived cultur-
al interpretation of narrator’s own experience. The autobiography can validate one’s
personal experience within a given context or a divergent notion that seeks to alter
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the social landscape by introducing a new “face” for cultural consideration (Ahponen
2005). Invariably, autobiographical work is composed of cultural representations that
navigate the terrain of self-other relationships ripe for sociological inquiry.
The autobiographical data in this study are drawn from a discourse analysis of the
memoirs of thirty-three mothers who published their narratives of raising children
with intellectual disabilities between 1988 and 2009. Despite their contemporaneous
publication dates, these memoirs do not depict a common time frame within which
mothers raised their children. The mother-child relationships narrated in the mem-
oirs vary from the 1950s through the 1990s, yet these memoirs were written for and
distributed exclusively to contemporary audiences. As a result, the narration and
interpretation of these memoirs reflects current cultural understandings of mother-
ing children with intellectual disabilities, even while the some of the treatment ap-
proaches described may be antiquated.
Intellectual disability is defined broadly in this study to include disorders rang-
ing from speech and language processing impairments to severe mental retardation,
specifically including autism spectrum disorders, cerebral palsy, fragile X syndrome,
Rhett’s syndrome, Down syndrome, and mental retardation, among others. Memoirs
depicting children who experience physical disabilities or genetic conditions not as-
sociated with a cognitive impairment were excluded. This wide range of disabilities
does not lend itself to a uniform understanding of the unique needs and experiences
of children with intellectual disabilities; however, the cultural and educational label
of intellectual disability does offer some insight into the “courtesy stigma” (Goffman
1963) applied to mothers of children with intellectual disabilities.
I used a grounded theory approach to discourse analysis (Glaser and Strauss
1967; Glaser 1978; Charmaz 1995; Wilson-Scott 2004) in which emergent themes
developed throughout the data collection and analysis. Specifically, I began analyz-
ing mothers’ memoirs to develop research questions for a series of interviews with
mothers of children with intellectual disabilities (forthcoming) and in due course
uncovered notable themes worthy of separate study. I determined the sample size
by the number of such memoirs that I could locate through the Library of Congress,
intending to analyze all such memoirs. Because the Library of Congress has not cat-
egorized these memoirs as a separate genre, inevitably there may be some memoirs
that were excluded unintentionally.
Through reading and coding the texts into concepts and categories reflecting par-
ents’ expression of personal identities or subject-object relations, themes emerged
through which interrelationships and ultimately an analytic framework was uncov-
ered. After the fifth text, I began thematic analysis looking for terminology and pat-
terns that related to heroism as portrayed in modern literature as well as military
terminology at various levels of abstraction such as “warrior,” “battle,” “enemy,”
“territory,” “trench,” “bravery,” and “courage.” I then used these data to generate
middle-range theories to explain the trends in my analysis.
I extended my thematic discourse analysis to include book reviews of the selected
memoirs with particular attention to consumer book reviews posted through online
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sources such as www.amazon.com and www.barnesnoble.com. This added element
of analysis framed the public discourse surrounding the published texts and dif-
ferentiated it from the memoir authors’ personal interpretations of themselves.
Furthermore, these data yielded interpretive insight into meaning making through
electronic venues.
Ultimately, the use of multiple data sources served to develop an analytic frame-
work for an emerging cultural identity of mothers who have children with intellec-
tual disabilities. This framework is centered on individual presentations of self that,
once interpreted by the public, emerge as a larger cultural identity for these mothers
as “warrior-heroes.”
INDIVIDUAL CONSTRUCTION OF MATERNAL IDENTITY
And there I was—a tigress charging the nursery, rushing to my son. Suddenly I
was as I picked up my baby, rocked him, comforted him the woman I’d been pre-
paring all my life to become. I was Benjamin’s mother (LaSalle 2003:9–10).
In situating their autobiographical experiences of raising children with intellectual
disabilities, mothers engage in dialogue with “experts” in the disabilities community
who have heretofore indicated that mothers are a source of animosity in the lives of
children with neurological differences, rather than keys to the children’s happiness
and development (Bettleheim 1972; Brockley 2004; Grinker 2007). Instead of suc-
cumbing to the dominant, medicalized discourse of disability, these mothers write
in opposition to the existing professional expertise, “bridl[ing] at the language of
therapy and pathology” (Dunsford 2007:13).1 These mothers offer themselves as a
new source of authority:
We had been through three years of people not hearing what we had to say about
Nat, including nearly a year in which the personnel at Nat’s school had failed to
understand his needs. We were not about to waste any more time in a place where
we weren’t listened to. This was to be the first of many times when the two of us
would be galvanized by a professional’s lack of understanding of Nat. We simply
do not accept it. We know that we, the parents, are in the driver’s seat, and we
know our kid best. (Senator 2006:65)
Many of the memoir authors recounted moments of “triumph” in avoiding medical
interventions and disproving medical models.2 Yet despite expressed discomfort with
professional structures and interventions, these mothers’ storytelling approaches are
decidedly methodical, using a familiar phased approach cited in multiple medical
sociology texts.
Sociologists have a long history of studying illness and the shared experiences
of patients and caregivers (Davis 1963; Corbin and Strauss 1988; Frank 1995; Karp
2001). Corbin and Strauss (1988) delineate “phases” of chronic illness while Frank
(1995) invokes the language of a “journey” through which sick people and caregiv-
ers come to resolve ambiguous circumstances and search for meaning. Likewise,
Karp (2001) describes an “illness career” in which familial caretakers evaluate their
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responsibility to tend to people with mental illness. Similarly, mothers narrate their
stories of raising children with intellectual disabilities using an iterative process
of moving through stages: (1) challenged expectations, (2) diagnosis, (3) quest, (4)
battle with social systems, and (5) acceptance of a new conception of the parent-
child relationship.
Challenged Expectations
The memoir authors explored in this study are middle- and upper-middle-class,
educated women who had ample access to medical interventions during and af-
ter pregnancy, including prenatal care. Like the women interviewed by Landsman
(2009), these mothers anticipated the birth of their children as “planned, controlled
events” that would transpire without medical complications or neurological chal-
lenges: “I was convinced that I was going to be a champion in delivery, just as I was
smugly sure I had orchestrated the perfect pregnancy. Blaze, however, had different
ideas from the start” (Ginsburg 2002: backcover). When signs of atypical character-
istics yield evidence of neurological differences, mothers’ expectations of normalcy
are challenged. The mothers express confusion, fear, self-blame, and a sense of grief
for the “child who would have been” or, as Solnit and Stark (1961) described, the
healthy child they imagined they would rear:
What was I grieving? I grieved for the old secure family life I thought I once had.
I grieved for the loss of my son. I grieved for the son who was supposed to have
been born intelligent and fully competent . . . I also grieved for my sons . . . who
were continuously asked to help with Trent’s care. (Marquette 2002:24)
I anticipated a couple of years of idyllic days with my baby, rocking him to sleep,
crooning lullabies, later finger painting, building with Legos, exploring the zoo.
But the serenity . . . was short lived. . . . When I finally did learn that the source of
J.P.’s problems was genetic, I was off the hook. Though in one sense I had caused
them, in another sense I had done nothing wrong. I was not a bad mother, as I had
feared. But what kind of mother was I? (Dunsford 2007:43–44)
Despite the fear, grief, anger, and self-blame, mothers push forward to obtain medi-
cal diagnoses for their children’s challenges. Mothers uniformly seek to understand
and label how their children are different than typical children and the children they
expected to parent.
Diagnosis
Whether the child’s intellectual disability is evident immediately after birth or
signs slowly emerge over time, diagnosis is a critical aspect of mothers’ understanding
and ultimate acceptance of their child’s behavior and their parental responsibility:
Ben had Asperger’s Syndrome, this we finally knew. It wasn’t my fault. I hadn’t
screwed up as a mother. . . . Asperger’s Syndrome was neurological, part of
Ben’s wiring, part of his DNA. I hadn’t made Ben antisocial. I hadn’t made
him precocious—a little grownup before his time, a walking encyclopedia of
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knowledge—any more than I’d made him a loner, a boy who liked things more
than he liked people. (LaSalle 2003:254)
The desire to find the appropriate diagnosis is not a simple process for mothers. Bar-
bara LaSalle (1998) searched for more than thirty years to define Ben’s behavioral
differences as Asperger’s syndrome. Clare Dunsford (2007) sought out five different
neurologists and an ophthalmologist in addition to her son’s regular pediatrician to
discover that her son had fragile X syndrome. Yet even after diagnosis, the clarity
that purportedly comes from medicalization eludes mothers as they struggle against
cultural barriers to acceptance of their children:
It changes you forever when you experience childhood contorted by disability or
illness for the first time. It is like witnessing the distorted reflection of a hereto-
fore perfect world. After a while, you get used to it and even come to appreciate
the perspective it has given you, but I was not there yet. The images of childhood
I had started to see in my life with Nat were different from those depicted by
Brazelton, Leach, and Spock. (Senator 2006:57)
I reminded myself daily that it was good to have a diagnosis. But in the weeks
following Zack’s diagnosis, sadness settled into my bones. . . . now I knew he
wouldn’t outgrow these idiosyncrasies. He wasn’t just a late bloomer; he was se-
verely impaired. His life would never be what I had imagined it to be, nor would
mine. (Griffin 2005:35)
Despite the mixed emotions about the diagnosis of their children, mothers seek sol-
ace in the quest for treatments and services. Diagnosis offers memoir mothers the
hope of a cure or, at minimum, a mitigating treatment. Through the process of diag-
nosis, mothers begin the journey as protagonists in the quest to access service and
solutions.
The Quest
Contemporary child-rearing ideologies indicate that mothers are expected to en-
gage in self-sacrifice as they prioritize the needs of their children over any other
interest they might have in power or material gain (Hays 1996:157). In the memoirs
examined, this predominant ideology is first tested by the diagnosis of children’s dis-
abilities and then evolves into a hyperapplication of the intensive mothering (Hays
1996) or concerted cultivation (Lareau 2003) phenomenon through mothers’ initia-
tion of a quest on behalf of their children. In seeking a diagnosis for their child’s
myriad developmental peculiarities, the memoir mothers overcome fears of not
loving or understanding their children while developing new knowledge, skills, and
expertise specific to them. Mothers become the primary advocates, spokespeople,
service providers, researchers, and first responders for their children.
After a night of fitful sleep, Jay got up at 4:30 to go to work. He sat on the side of
the bed, thinking, and finally began to talk. “We need to get Zack into therapy,
Elizabeth . . .” Jay continued on, repeating things I had been saying to him for
months. I was dumbfounded. Hadn’t he been listening to me? Didn’t he know I
was doing all of these things already? (Griffin 2005:34)
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The memoirs demonstrate different roles for mothers than those of others who seek
to help children with special needs, including fathers.3 Mothers are the central focus
of their children’s stories, not just as the authors of the memoirs but as protagonists
in the quest for better lives for their children:
Paul helped when he was home, but his work took much of his time. Patterning
[therapy] was his second job. It was my first and took every ounce of energy I had.
I felt jealous as he left the house each day, but I wouldn’t have traded places. Only
I, the supermom, could do what needed to be done, only I could make it happen.
(Zimmermann 2004:65)
Feats of superhuman strength are common themes in mothers’ memoirs. These
memoirs alleviate mothers’ historic accountability for the cause of disabilities by
elevating the discourse to heroism; through the language of the quest, mothers pres-
ent themselves as responsible for finding the best therapies for children’s disabilities
using heroic, time-consuming, and often expensive measures.
The decision I had to face was, did I just sit around and wait for funding—which
could still take months—or did I self fund, because treatment was imperative
right now in order to pull him through the window [of autism]. . . . I was having to
pay $4,000 a week. When I talked to other families about how they dealt with so
many expenses, the story was always the same: They’d refinanced their house or
borrowed money from family members. (McCarthy 2007:149)
This sense of urgency in mothers and the single-minded focus with which mothers
approach their children’s treatment inevitably place them at odds with bureaucratic
social systems designed to serve legions of people and families with disabilities.
Battling Social Systems
A hero’s epic requires an antagonist to drive the plot; mothers’ memoirs are no
different. Sometimes a neurological disorder is presented as the antagonist against
which mothers battle, as indicated by the December 2008 cover of Redbook maga-
zine, “Hero Moms Battle Autism” (Kimbrell-Bacot 2008). However, more often than
not, memoir authors portray the social systems designed to help families through the
experience of disability as the ultimate antagonist in mothers’ attempts to secure
better lives for their children:
I called Evan’s brain-dead neurologist and told him we needed to try a different
medicine. I told him that this one was causing hallucinations and violent behavior
and that last night he’d been trying to hurt himself. Of course, the doctor scoffed
that this amazing medicine would cause any reaction like that. . . . Sadly, he had
refused to take my word for it. Evan had had to endure another horrific night for
this idiot to see what the medicine did to him. (McCarthy 2007:40–41)
In the memoirs, mothers routinely challenge the approach and expertise of pro-
fessionals from multiple systems, including medical, educational, psychological,
social work, and pharmaceutical industries.4 The result of this challenge is significant
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acrimony from professionals and organizations geared to assisting families facing
intellectual disabilities.
I had no idea such opinionated camps existed regarding therapy for autism and
related conditions. Though many professionals welcome any technique that helps
a child, some regard any but the one they have trained in with alert suspicion. It
can be like two armies, standing on opposite banks of a river armed and ready for
battle. The territories are well marked, and those foolish enough to think there
might be benefit in more than one approach are in danger of getting caught in the
crossfire. We had entered the danger zone. (Griffin 2005:41)
Mothers are left to take on the role of warrior, fighting the edifice of professionaliza-
tion to garner services and support that reflect the experiences of their children and
families:
Writing with blistering honesty and irrepressible humor, Debra Ginsberg in-
terweaves her moving personal story and tales of her hard-fought battles with
schools and medical professionals to create a book that speaks to all parents.
(Ginsburg 2002: backcover)
Blum’s (2007:206, 213) interview study of mothers raising children with “invisible
disabilities” reinforces the notion that social systems serve as adversaries against
which mothers do battle. In Blum’s estimation, mothers “act as vigilantes” to garner
both authority and resources in a “stingy public environment” that devalues children
with disabilities and their mothers.
Yet, through the battle, these mothers discover a newly found courage in defying
traditional expertise and claiming moral authority on behalf of their children:
The courage simply to make it up if it didn’t exist and then stick with it was grow-
ing within me as I saw how other people grappled with problems like the ones I
faced. . . . I felt new courage to do whatever I needed to do for Nat’s sake. (Sena-
tor 2006:62)
This courage often separates mothers from even their most intimate confidants.
Most of the mothers articulated a distance between themselves and their loved ones
during this journey, including the fathers of their children.5 However, this cultural
isolation leads mothers to find unique understanding of their children and their own
lives, which again separates them from their communities and reifies the concept of
the lone warrior-hero.
Acceptance
The conclusion of each memoir indicates a transformation of mothers from fear-
ful and grieving caretakers to open and accepting parents of talented and inspired
children with neurological differences. Through the quest, mothers describe con-
structing new conceptions of mothering and normalcy that differ from the dominant
cultural norms equating successful parenting performance with children’s intellec-
tual outcomes:
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By that birthday and Christmas I had come to know the Lord, and thus I responded
differently to Verlinda’s inability to notice the gifts and bright wrappings. I recog-
nized the change in me. I was beginning to accept her as she was and was to enjoy
the little indications of pleasure she was expressing. (Chalfant 1988:48–49)
Yet this acceptance is achieved without veering away from treatments and therapies
to help children function more typically. Instead, mothers arrive at an understanding
of their children that is not focused solely on developmental milestones even as
they continue to seek newer and better interventions for their children and hope
for a miracle.
Kat is growing up. What is she growing into? . . . I have rushed through life to
avoid confronting who Kat really is and who that makes me. Little by little, I’m
more able to see her as she is. Yet even now, sometimes I look at her and think
there will be a miracle. (Zimmermann 2004:148)
Acceptance of children with intellectual disabilities, as presented by memoir moth-
ers, is not “giving up” on the therapies and mitigating treatments; it is more of a
personal transformation of mothers and their relationships with their children and
the world as contextualized by their children. It is a push-and-pull between the love
mothers have and are expected to have for children and the culturally reinforced
desire to rear typical or even exceptional children.
According to Hochschild (1983), people experience emotions within the con-
text of social expectations or “feeling rules.” The epiphany for the mothers studied
is the awareness that they are not going to fulfill the cultural expectation of “nor-
mal” child development; however, they are able to satisfy the culturally sanctioned
role of the “good mother” by offering unconditional love and self-sacrifice on be-
half of their children. These mothers transform their emotional states of mind by
creating new social contexts and feeling rules on which positive emotions can be
based. Mothers alter their senses of self and presentations to the world by realign-
ing priorities; obtaining new, flexible jobs; getting involved in new social move-
ments; developing new interests; and experiencing new relationships with others
while letting go of or changing former relationships. Life will never be the same as
before the births of their children. As a result, a new identity begins to emerge: “I
was beginning to let go of the brittle sense of who I was in the world: no longer the
top student, the one with all the answers, but now the one who had a lot to learn”
(Dunsford 2007:14).
Examination of these memoirs does more than underscore the staged processes
outlined in existing medical sociology literature; instead, analysis reveals a cultur-
al phenomenon by which mothers of children with intellectual disabilities wrest
control away from dominant medical discourses about disability and redefine a
public identity in relationship to their children. The memoirs do not linger in the
realm of personal troubles (Mills 1959); instead, they are calls to action: “And the
aim of this book is not just to tell my story but also to point the way for others
toward that open door” (Slate 2009:ix). Likewise, Jacquelyn Altman Marquette
(2002:2) writes to share her experiences with other families so that “you the reader
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may begin to see that options are possible.” In documenting their journeys, these
mothers seek to garner solidarity with other parents in similar positions: “No one
should ever suffer alone. I would remember this truth during Sarah’s infancy,
especially during the lonely days that marked her open-heart surgery” (Sullivan
2004:23).
It is in the effort to raise awareness that these memoirs divert from personal ca-
tharsis and reflect a desire to transform cultural expectations about people with in-
tellectual disabilities and their families.6 There is a uniform intention to seek out new
cultural awareness and normative practices that allow families to engage in cultural
conversations about parenting in ways previously unavailable to mothers of children
with intellectual disabilities. In doing so, the authors use both common structure
and language that point to an emerging cultural identity construction. Moreover, in
offering public presentations of motherhood, memoir authors are giving “ordinary”
readers a hand in creating this new archetype, relieving professional experts of he-
gemonic control over the structure and imagery of narrating the experience of intel-
lectual disability. This interactive process is enhanced through the new technology of
online editorial and consumer book reviews, vehicles for communication and social
change that did not exist only a generation ago.
CULTURAL CONSTRUCTION OF THE WARRIOR-HERO IDENTITY
It has taken me a long time to write this book. I have asked myself why, but I
realized that writing a book like this leaves you open to other people’s ideas and
opinions. That is not a prospect to take on lightly (Deckmar 2005:9).
Throughout history, cultures have articulated understanding of social roles
through literary tales. Tales of heroism expose the complexity of discourses on so-
cial order, conflict, and the meaning of individual contributions to society (Fasching
2004). Whether envisioned by Homer, Shakespeare, or Twain, the hero emerges in
literature as an individual with enormous transformative capacity to rise above pow-
erful social forces to achieve triumph. Often, the hero is created out of a “celebration
and commemoration of war” (Brown 2004:43), culturally tying the notions of hero
and warrior together both literally and symbolically.
Fishwick (1972:16) suggests that “to find new heroes, institutions . . . [we] may see
that new ideas and labels apply admirably to old truths.” Likewise, old labels may be
applied to new characters that reveal innovations within different cultural contexts.
It is in this way that the mothers’ memoirs invoke the same literary structure of a
hero in which a reasonably average individual receives a devastating blow to social
and emotional stability.7 She then employs every emotional and financial resource
available to attain the best medical and educational therapies for her child while
battling social forces that present barriers to her every effort. It is through this battle
that she is transformed into the heroic figure, not because of her innate character-
istics or inherent exceptionality but because of her hard-fought victories on behalf
of her child. Her success is not always measured by the child’s progress (although
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it frequently is); it most often comes with the single-minded hope of liberating her
child from social edifices and achieving the “best” outcome:
All I knew was that there was no time to lose and that it was my job to heal my
son, help him find the parts that were missing. I took it as fate, and I sank my
whole life into his—relinquishing therapy to therapists, trusting myself with ev-
erything else. Hours and hours of everything else. (Kephart 1998:148)
Metaphors are powerful literary tools that carry meaning and social value. The
imagery of the warrior-hero takes the day-to-day experiences of these mothers and
“integrates them into a meaningful whole” (Berger and Luckmann 1966:39). This new
archetype reinvents the daily challenges of raising a child with an intellectual dis-
ability into a literal and figurative struggle for social transformation. It is a statement
of political and cultural change that can be made whole only by the personal actu-
alization of the struggle through public display. In fact, several mothers of children
with intellectual disabilities explicitly embrace this new warrior-hero archetype:
A Mother Warrior is a mother who hears there is no hope for her child and,
instead of retreating and mourning, breaks down walls, weaves her way through
obstacles, follows her intuition even when people tell her she is crazy. She is a
mother who believes in hope. A mother who believes in miracles and is able to
carry on with strength and determination, even when her partner doubts her and
offers no support. A mother who never gives up, even when she keeps hitting
dead ends. These are the women who will continue to open the door so future
generations of children don’t have to suffer. These are the mothers with hearts of
gold and shields made of the strongest armor. (McCarthy 2008: backcover)
While Jenny McCarthy may be a controversial advocate on behalf of children with
autism and their parents, her affinity for heroic imagery is not unusual. Anne Ford
(2010:xi, xii) also writes “to praise our heroes—mothers, all mothers,” especially for
their “single-minded advocacy.” Even those mothers who are battle weary write with
the tenor of war. LaSalle recounts singing “The Wheels on the Bus” to her son, Ben,
on the way to the doctor’s office. Once LaSalle (2003:18) learns of Ben’s develop-
mental delays (later diagnosed as Asperger’s syndrome), she changes her tune:
If I hadn’t seen the doctor’s face when he told me about Ben, if I hadn’t heard his
words, I’d be singing again. But different songs, with more advanced tunes, World
War I songs. . . . By this point, I’d be singing “Over There,” “The Caissons Go Rolling
Along,” and “It’s a Long Way to Tipperary.” And when I looked at my little boy
now, I’d see him the way I had before, the way my mother once saw me, the way
mothers are supposed to see.
Ben’s diagnosis was devastating for LaSalle and brought silence during the ride
home from the appointment, but, through the shock, LaSalle understood that as
Ben’s mother she should prepare herself and her son for war.
Yet meaning is not achieved through the unidirectional communication of moth-
ers’ texts; instead, it arises when the public recognizes the literary structure found in
these mothers’ memoirs and aligns the stories with heroic narratives. While it is un-
likely that Mead (1967:76) imagined a “matrix of meaning” evolving on a computer
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screen, the near instantaneous feedback provided by online consumer book review-
ers offers a new kind of symbolic relationship between memoir authors and a broad
cultural audience that reinforces the warrior-hero imagery: “A page turner, this book
tells an absorbing, well-written story of a passionate and determined mother whose
no-holds-barred quest for answers unearthed solutions to healing her son’s autism”
(Kirk 2009). Likewise, many public figures and institutional representatives seeking
professional alliances with parents embrace the heroic notion of parenting a child
with special needs. This is most clearly exemplified by Barbara Firestone’s recent
book, Autism Heroes (2008), which pays tribute to the parents of children with intel-
lectual disabilities, specifically those with autism.
Despite public interpretations of maternal heroism, many of the memoirs ana-
lyzed do not overtly identify the heroism of the protagonist mother; instead, the
marketing strategies used to sell the stories capitalize on the warrior-hero concept
by referencing the details of mothers’ battles and situating them as courageous:
In this book, we see . . . unconditional love, embellished with courage, faith, deter-
mination, stubbornness, stamina, and trust. This is a must read if you or a loved
one is dealing with autism. The message is strong and will help carry you the
distance. (Amazon.com 2009)
This book reviewer and the marketing experts for Autism Is a Four Letter Word—
Love (2009) assert that not only is this book a courageous work but there is a
public need for strong, courageous stories to carry others through the journey.
Other memoir marketing ploys involve similar claims of maternal bravery and
triumph:
“Megan and Mary Beth are brave to share their deeply personal story of adversity,
love and triumph during their journey to discover the answers to Fragile X. . . .
Senator Chuck Hagel (R-NE).” (Busby and Massey 2006: backcover)
I have known Sandy and Bob Papazian for over ten years, but until Growing Up
with Joey I never knew how brave Sandy really is. Her love, strength, and deter-
mination ultimately become a story of triumph for Joey and his entire family.
(Papazian 1997: backcover)
However, some marketing strategies demonstrate an implicit conflict between
the personal interpretation of a mother’s story and the public narrative of the
warrior-hero:
Wolfson doesn’t crown herself a hero in the face of Ansel’s disease. . . . she is
truthful, courageous, tenacious, and whip-smart; she is her son’s greatest advocate
and a narrator to trust and admire. (Wolfson 2003: backcover)
While Penny Wolfson may not “crown herself a hero” in Moonrise (2003), her publi-
cists certainly imply that her courage is worthy of such a title and that she is deserv-
ing of public admiration. This public acclaim is presented as a compliment that is
only disputed by a mother’s humility, not her unworthiness of praise.
On balance, the warrior-hero concept is a far cry from the refrigerator mother
archetype. It appears to be a statement of power and positive social reinforcement,
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which integrates these mothers into a long history of social triumph. Yet several
mothers’ memoirs explicitly resist labels of “special-ness” or superiority:
The idea that tragedy transforms and ennobles those it strikes persists on the
strength of a half-truth. It always leaves its mark, but not always for the better. It
is often said that God sends kids like these only to those who have what it takes
to love them. Those of us who give birth to a child with special needs, that tired
but useful euphemism, have the dubious distinction of being dubbed as special
ourselves, by a kind of transitive property of divine selection. This takes on a
sinister resonance when the child has a genetic condition and the mother is the
carrier. (Dunsford 2007:47)
Dunsford goes on to say, “The role of supermom, whether bestowed on me by friends
or by strangers . . . lies heavy on my shoulders” (p. 51).
But even those memoir authors who do not wholeheartedly embrace the warrior-
hero label for themselves incorporate the cultural language of a warrior-hero through-
out their texts. When the language of heroism is not used to describe oneself, several
memoir authors apply the terminology to their children, recognizing the intertwining
struggles of normalization and social acceptance of disability: “Nothing moves me
more than J.P.’s everyday heroism, when he fights back against the current in which
the fragile X gene tries to take him” (Dunsford 2007:138). Similarly, Beth Kephart
(1998:220) refers to her son in a vocabulary of wartime struggle:
Things happen. They are bound to, and they do. No mother, no teacher, no play-
ground supervisor can wage an assault against the inevitable. For a little boy
diagnosed with obsessions and aloneness, life is an unusual peril, and for the
parents, for me, taking responsibility means facing a boggle of bad choices. Do
I teach my son to be afraid before he has summoned the courage to trust? Do I
counsel caution before he is willing to take a risk? Do I enumerate dangers, do I
hide them? Do I urge self-defense before he can possibly know what battles are
worth his fists, his heart, his soul?
The use of warrior-hero language indicates a tacit awareness of a cultural identity
transformation away from explicit mother-blame and toward a cultural concept
that rewards figurative battle prowess. As Berger and Luckmann (1966:22) note, the
language one uses provides “necessary objectifications and posits the order within
which these make sense and within which everyday life has meaning.” The repeated
use of war metaphors, courage, and acts of bravery suggest that the memoir authors
are situating their stories of personal identity transformation within a larger cultural
context that values the warrior-hero construct, thereby consciously or perhaps un-
consciously trying to manage public impressions and positioning themselves within
a reinvented tradition of the warrior-hero.
THE CONFLICTED HERO: DISCUSSION OF THE ARCHETYPE
It isn’t fair to expect mothers to make sacrifices that no one else is asked to make,
or have virtues that no one else possesses, such as dignified subordination of their
personal agenda and a reliance on altruism for life’s meaning. Virtues and sacrifices,
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when expected of one group of people and not of everyone, become the mark of
an underclass (Crittenden 2001:9).
The warrior-hero terminology appears reverent, even iconographic. This new
variation of a classic archetype is reserved almost exclusively for mothers (rather
than fathers) of children with intellectual disabilities, which is a decided departure
from historic venerations of virile men as heroic icons (Powers 1991). Therefore
it is conceivable that some may view this new warrior-hero depiction of moth-
ers with intellectually disabled children as a progressive statement about moth-
ers’ role in modern society in which women have an opportunity to demonstrate
heroism and warrior prowess instead of serving, as Brown (2004) suggests, as the
economic and sexual possessions of their male counterparts as in previous literary
and cultural tales.
However, this new paradigm neither eliminates maternal responsibility for children’s
disabilities nor alleviates the social burden placed on mothers. Instead, the paradigm
reflects a cultural shift in maternal responsibility from causing intellectual disabili-
ties to curing them, or at least identifying the medical or educational intervention
that will mitigate the circumstances of the disability. If mothers fail to demonstrate
exhaustive efforts to secure services for their children, Blum (2007:209) suggests that
this idealized notion of “mother-valor” quickly shifts back to mother-blame in which
mothers are viewed as “proximate causes” of prolonged or exacerbated disability.
Beyond the sociology of disability, the imagery of the “mother-valor/blame bi-
nary” (Blum 2007) is becoming common among sociologists of biomedicine who
examine the application of cultural mothering ideologies to fetal genetic testing
(Rapp 1999), fetal surgery (Casper 1998), and reproductive technologies (Becker
2000). These would-be mothers are directed toward self-sacrifice even before their
fetuses have been birthed and are considered heroic in their efforts to preserve
the potential lives and health of fetuses. Yet the tales of heroism end for pregnant
mothers when they contest the cultural conditions of such heroism, refuse medical
interventions for their fetuses, or seek to abort a fetus with a presumed disability.
At this point, Casper (1998) suggests that the discourse of heroism reverts to the
familiar notions of blame, placing expectant mothers in states of ambiguity as they
consider their options.
This familiar storyline is integrated into public interpretations of maternal bio-
medical accountability as demonstrated by Internet-savvy memoir consumers, who
both convey and assess appearance and manner (Goffman 1959) through electronic
code. In an online consumer book review, Mary Lou Supple (2008) reflects on Spell-
ing Love with an X through the language of the wartime struggle:
As a parent of a son with Fragile X who is a couple of years younger than Ms.
Dunsford’s son, J.P., we’ve experienced the despair as well as the joy she writes
of. . . . Life as a carrier of Fragile X has its own challenges—ones you might believe
are your own character faults—until you find out, at whatever age, that you are a
carrier and that the personal battles you’ve fought for so long are the result of
a genetic defect you were born with.
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This notion of “personal battles” articulated by an online consumer subtly coerces
Dunsford’s electronic persona into a somewhat discrepant role as a warrior despite
her adamant resistance to notions of heroism.
Yet mothers’ memoirs of raising children with intellectual disabilities suggest an
element of conflict with heroic portrayals of mothers’ social and biomedical account-
ability. The warrior-hero archetype is not one that has been embraced overtly by all
of the mothers presenting their stories of raising children with intellectual disabili-
ties. Furthermore, the active resistance to such labels as demonstrated by Dunsford’s
Spelling Love with an X is indicative of a larger social discourse about the cultural
identities of mothers who have children with intellectual disabilities whereby the
title often conflicts with the individual experience of raising a child with an intel-
lectual disability. However, as more authors, publicists, and book reviewers reify the
concept of the warrior-hero, mothers’ autonomy to construct their family stories is
undermined by the creation of a cultural commodity accessed with the touch of a
button.
Moreover, harsh online contributors preclude open discussion about experiences
that do not fit social expectations and blame mothers for their inattention to scien-
tific “truths”:
I’m starting to feel sorry for the human race when this kind of nonsense has any
kind of following at all. Autism, indigo children, crystal children—this is all idi-
ocy, non-science and silliness. Jenny McCarthy is obviously retarded, so it’s no
surprise she passed it on to her defective offspring. I become angry when exposed
to such pseudo-scientific stupidity. (Brown 2009)
Attempts to restrict the conversational boundaries of mothering children with intel-
lectual disabilities, by castigating novel expression, suggest a “problem arising out
of the dialectic . . . between . . . subjective identity and social identity assignments”
(Berger and Luckmann 1966:176). This problem is demonstrated by idealized stan-
dards and the subsequent chastisement of inadequate mothers and negates one of
the most compelling aspects of the memoirs: the isolation of the hero.
I felt so isolated. The other parents created a community in which they all talked
about their experiences and expectations: their babies’ sleep patterns and nurs-
ing habits, about going home with their babies, and their new nurseries. (Slate
2009:21)
Mothers write partly to break the isolation and gain solidarity with other parents
who face similar parenting challenges; however, through the experience of seeking
others out for comfort, mothers are saddled with the additional responsibility of
explaining themselves and their children, while living up to an emerging cultural
standard that is difficult to shoulder, particularly alone.
It seems to me that my inability to enter my son’s world is a personal failure, a
crisis. I do not mention it to the few friends who call. I hide it from my family, and
I decline to talk about such things with my husband . . . and so in the dark at night,
I lie awake and wonder, worry about the instincts I am lacking, and conclude—
horrified—that love alone may not be enough. (Kephart 1998:54)
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The people who said these things [about what our son should not do] never lis-
tened to us. Therefore, after some time, I stopped trying to explain [his behavior].
It all just made me so very sad, sad, sad. The very people who could have sup-
ported us didn’t understand and that made our burden even heavier. They put
stones in our hearts. I cried many a night over people’s accusations and lack of
understanding. (Deckmar 2005:45)
However, instead of breaking the isolation, some online consumers highlight the
apparent imperfections of mothers raising children with intellectual disabilities. In
reviewing LaSalle’s Finding Ben, C. Lai took a competitive stance toward mother-
ing a child with intellectual disabilities, demonstrating cultural antagonism toward
mothering children with intellectual disabilities:
I was a “goody-two-shoes” when I was a child, always trying to please the “grown-
ups” and fit their expectations. But as I grew up, I realized that I would have to
make my own decisions, ESPECIALLY when it came to my child! Obviously,
this mother did not. No matter what my family said, no matter that the doctors
accused me of being an “overly protective Mom,” I knew my child was this way
because of something internal to him, and that his behavior was not his fault!
When I finally found a doctor who recognized his autism (at age 4), I realized that
the truism is correct; “a mother knows best.” But even if I had not received the
diagnosis, I would never have behaved the way this mother did. She betrayed her
son because SHE wanted to fit in, to be a “good girl.” . . . I believe that most moth-
ers will love and accept their child, no matter how strange he is. And I believe that
is one of the most important things we can do for them! If you want to see what
NOT to do, this is the book for you! (Lai 2005)
This consumer does not review the book as intended by the online venue; instead, she
opines about the inadequacy of LaSalle’s mothering and locates her own mothering
approach as both appropriate and superior to LaSalle’s parenting. This emotionally
charged, comparative approach to the quality of mothering creates a difficult social
standard for mothers of children with intellectual disabilities to uphold. One moth-
er’s actions are legitimized, while another mother’s motives are publicly impugned,
thereby expanding the warrior-heroes’ antagonists from bureaucratic professionals
to cultural systems more broadly.
In addition to creating a tense cultural identity for mothers, the warrior-hero ar-
chetype implies that mothers have to be valiant to deal with “children like these.”
This heroism perpetuates a sense of otherness in which people with intellectual dis-
abilities are excluded from public life.8 In writing these memoirs, parents are clearly
attempting to reduce that sense of otherness by presenting their children as loving,
creative, talented individuals deserving of love who inspire families to think differ-
ently about the world. Through the cultural labeling of mothers as warrior-heroes,
however, public interpretation threatens to counteract mothers’ attempts to human-
ize their children with intellectual disabilities.
The memoir authors also contribute to this seeming contradiction. Despite at-
tempts to reframe the medical and cultural discourses surrounding their children’s
disabilities, mothers’ willingness to go to “war” to mitigate the impact of disabilities
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