Memoirs written by parents of children with disabilities are a significant recent genre. Most are problematic: through their use of grief, their emphasis on a medicalized model, and their framing of the child's disabilities, these memoirs represent the child not as a person but as a problem with which the parents have had to grapple. Many memoirs, however, simultaneously work to humanize and value the children and reframe our cultural view of "typical" personhood through the lens of disability. This complex, popular genre reveals the powerful hold that formulaic narratives have, but also offers glimpses of ways in which formulaic narratives can and should be resisted and overturned. The books I examine demonstrate that the family can be a site that both bolsters oppressive cultural models of disability and profoundly challenges them.
The world wants our lives to fit into a few rigid narrative templates: how I conquered disability (and others can conquer their Bad Things!), how I adjusted to disability (and a positive attitude can move mountains!), how disability made me wise (you can only marvel and hope it never happens to you!), how disability brought me to Jesus (but redemption is waiting for you if only you pray).
For me, living a real life has meant resisting those formulaic narratives.
Parenting a (disabled) child can be tiring, distressing, upsetting and heartbreaking. It can also be rewarding, affirming, enjoyable and heartwarming. We heard all of these emotions in the accounts of parents even during the shortest conversations.
A day after my daughter was born, we learned that she had Down syndrome. A few days after this, a close friend gave me a book, Jennifer Graf Groneberg's Road Map to Holland: How I Found My Way Through My Son's First Two Years with Down Syndrome (2008). I began reading the book, eager for this mother's story. I knew almost nothing about Down syndrome beyond a range of familiar cultural stereotypes, and I wanted both accurate information and—more importantly—a narrative that would help contextualize my life and my daughter's life. I wanted encouragement and a clear picture of the joys and love that I hoped would still be part of our lives—something parents of typical kids have almost endless access to. This was the reason my friend gave me the book, intuitively sensing that I needed a narrative that would validate my daughter's existence, her personhood.
With effort, I made it a third of the way through the book. The effort was necessary because page after page offered the extremely detailed story of a mother's grief. When I encountered yet another description of grief—Groneberg's statement, "Every time I think of Avery's Down syndrome, I start to cry. And I can barely manage our lives as it is" (84)—I closed the book and put it away. I was living in that place myself at the time and didn't need to experience another mother's suffering, as well. The book only made me feel worse—making me feel that the central experience of having a child with a disability is grief—and provided none of what I'd gone to it looking for.
When I returned to the book months later and read it through, I discovered that in the middle of the book, Groneberg narrates a turning point in her grieving. In general, the second half of the book counters the grieving narrative and describes the positive experiences Groneberg identified with having a child with a disability. This book, then, illustrates both the problems in and the possibilities for the genre of memoirs by parents of children with disabilities. Problematically, this genre can fortify cultural stereotypes and familiar narratives that portray children with disabilities as damaging forces in their parents' lives, as when Groneberg describes her life in terms of "despair. I'm the woman with the retarded son. It's a hurt so deep I only look at it when I'm forced to" (159-160). At the same time, however, parental memoirs have the ability to convey radically different notions of disability enabled by intimate relationships and love. They have the ability to represent the child as a person who enriches his or her family, such as when Groneberg notes near the book's conclusion, "You can't have a child, any child, and not be changed by the experience. I'm changed by Avery. And the thing is, I don't want to be changed back" (212-213).
Memoirs by and about people with disabilities are a significant recent phenomenon.1 A significant subset of these memoirs are written by parents of a child with a disability—often, but not always, a cognitive disability. These are the memoirs with which I'm concerned. As a parent of a child with a cognitive disability, I've read memoirs by other parents with great hopes—hope for a story that would enthusiastically affirm the full humanity of my child, that would frame my child's disability as an embraceable aspect of human diversity, that would show me that my despair was emerging from wrong ideas, not from the inherent defectiveness of my child. My hopes were often dramatically disappointed—but on occasion satisfied, too.
These memoirs are widely read by parents of children with disabilities as well as other readers; many are published by large mainstream presses and receive glowing reviews from major publications.2 They are related to a larger trend of published memoirs written by individuals with disabilities and their family members. But this particular subgroup—the parent memoir—has received limited scholarly attention, including scholars from disability studies and scholars who focus on life writing.3 I don't propose to offer a thorough survey of the genre as a whole; instead, I'm making observations about the complicated functioning of the genre. These books reveal the powerful hold that formulaic narratives have, but they also offer glimpses of ways in which the formulaic narratives can and should be resisted and overturned. They demonstrate that the family can be a site that both bolsters oppressive cultural models of disability and profoundly challenges them.4
While parental memoirs can serve activist or advocate roles, I've found that the genre is far more complicated than I had expected.5 Many of the memoirs I have read reinforce and thereby strengthen our culture's dehumanizing stereotypes that surround and define disability. Through their use of grief, their emphasis on a limited medicalized model, and their framing of the child's disabilities, these memoirs often represent the child not as a person but as a problem with which the parents have had to grapple.
In the first epigraph to this essay, Harriet McBryde Johnson articulates the "formulaic narratives" that people with disabilities are forced to engage with. She notes the fact that, for people without disabilities, disability often functions as a metaphor: a burden that stands in for something else in the non-disabled person's life, an impetus for gratitude or religious commitment, or a sentimental lesson that warms the heart. For the parent of a child with a disability, however, disability isn't simply a metaphor; it's also a complex lived reality, presumably richer than the cultural stereotypes. I repeatedly expected parental memoirs to challenge the stereotypes, to expand beyond the easy narratives. And yet while virtually all of the memoirs I've read do some of that work of providing counternarratives and resistant interpretations of disability, they also demonstrate that the formulaic narratives are powerful. Despite living with a child with a disability, these parents are still living within a terrain defined by metaphor. Disability studies scholars have revealed that disability is socially constructed, and that even when it is a lived experience, that experience is shaped and defined in part by the symbolic realm.6 Parental memoirs provide excellent evidence to support this point. Even narratives that are trying to challenge familiar cultural stereotypes often end up endorsing them.
On the other hand, even memoirs that engage in these formulaic narratives do the opposite work as well, offering at least a glimpse into why and how the parents love this child. And they often describe in great detail the pleasures and happiness that are part of the family life, thereby recognizing the child as a valuable and loved human being. These memoirs matter because the parental framing and reframing of disability has the potential to instigate significant social change. In recent history, the impact of parental advocacy for the lives of children with cognitive disabilities has been huge. As Michael Bérubé, father of a child with Down syndrome, explains, "in the early 1970s some parents did swim upstream against all they were told and brought their children home, worked with them, held them, provided them physical therapy and 'special learning' environments. These parents are saints and sages. They have, in the broadest sense of the phrase, uplifted the race. In the 10 million-year history of Down syndrome, they've allowed us to believe that we're finally getting somewhere" (Bérubé, Life 27). Parents, then, by recognizing disability in different ways than the "traditional misrepresentations" that autobiography scholar G. Thomas Couser refers to, have the capacity to change the meaning of disability (Signifying 6-7). Anthropologists Rayna Rapp and Faye Ginsburg, as well as social science scholars Janice McLaughlin, Dan Goodley, Emma Clavering, and Pamela Fisher, identify parental narratives as capable of "meaning-making" (Rapp and Ginsburg 181) and "sense making" (McLaughlin et. al. 60). What I want to identify and validate in these memoirs is their work to humanize and value the children and reframe our view of "typical" personhood through the lens of disability.
Although the genre of memoirs by parents of children with disabilities isn't new (Dale Evans published a book about her daughter Robin, who had Down syndrome, in 19537 ), we seem to be in the midst of a publishing surge. Of the nineteen full-length, single-authored memoirs I've read, almost all were published since 2000.8 Most were written by women, although a significant minority—seven—were by men, and this gender difference did seem to affect the content and tone of the memoirs. All but one of the memoirs were about children with cognitive disabilities. Six of the memoirs described children with autism, six described children with Down syndrome, and seven were about other disabilities that involved cognitive or intellectual components. This makes these narratives particularly significant, because in some cases these parents are writing about children who may not ultimately be able to narrate their own lives, and who may not be able to consent to their depiction—either because of cognitive disability or because of how young they are when the books are published.9 The authors share a number of characteristics: all are white and middle class, and a significant number are academics, although the memoirs themselves are not written as academic studies.10 They offer significant differences, though: some, such as The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood, and Self-Discovery by Kathryn Lynard Soper, were written with a religious perspective (in this case the Church of Jesus Christ of Latter Day Saints), while others, such as Rescuing Jeffrey by Richard Galli offer an explicitly rational approach, and still others, such as Beth Kephart's A Slant of Sun: One Child's Courage, make use of more explicitly literary framing to present the disability.
Memoirs as sites of dehumanization
The ultimate problem in these memoirs is that the child is dehumanized in subtle or overt ways; or even if the child who is the immediate subject of the book isn't directly dehumanized, children with disabilities are. This dehumanization is often accomplished through grief, through troubling comparisons of various disabilities, and through relying on medicalized frameworks which make the cultural construction of disability invisible.
Excessive grief is one of the most obvious features in these narratives as a whole, and it functions to dehumanize the child by identifying the child as the source of almost unbearable sadness. The child is a tragedy. Although it figures more or less dramatically depending on the book, in general, the first half to three-quarters of many memoirs is misery. They start with a brief moment of happiness—often the days before birth, or perhaps the first days, months, or even years after the birth of the child (depending on how old the child is when the disability becomes obvious), and then they quickly and often dramatically segue to misery. These profound descriptions of unhappiness and grief are incredibly common; virtually every memoir offers a number of examples. Many of the narratives voice the grief over the loss of the idealized perfect child who wasn't born, as when Jane Bernstein writes of her visually impaired daughter, "The pictures I did not realize I had created so vividly of my bright, beautiful, healthy daughter are gone. In their place are resurrected memories of every blind person I have ever seen, beggars mostly, blind men with eyes that roll in their sockets that terrified me as a child and terrify me now. My daughter, my child. And there is nothing hopeful I can conjure, nothing at all" (Rachel 47).
Like Bernstein, many of the authors articulate a lack of hope as a crucial component of their experience with their child. Kathryn Lynard Soper, mother of an infant with Down syndrome, reacts to an encouraging conversation with her mother by explaining, "I wanted to join her in that hopeful place where there was nothing to be sad about. I knew it was real. I kept reaching for it within myself, as if reaching for a light switch in a dark room. But all I touched was doubt" (The Year 131). The memoirs also describe feelings of ineffectiveness and lack, as when Beth Kephart, mother of a child with pervasive developmental disorder, writes, "I scream my helpless anger into an empty room" (A Slant of Sun 77), and later in the book, as the narrative nears its turning point, she explains, "I have to say that it wasn't easy. I have to say that the weeks seemed endless and that friendships dwindled and that what I considered my youth left me. I have to say that there were wars inside me and fists pounded into the bed at night, my whole body furious about what had not been achieved" (A Slant of Sun 149).
Grief is a familiar part of the process of a parent learning that his or her child has a disability. I experienced a version of this grief, as did most of the other parents I know who have children with disabilities. Having that heartache narrated in the memoirs is honest, and it allows the parents to be fully human rather than to present themselves as paragons of virtue. It serves a function for many parents who read these books; for instance, one reader wrote in an online review of Road Map to Holland, "I received this book yesterday afternoon and finished it today. What can I say—I was completely and utterly entranced by the honesty and realness of what I read. Having a child with DS [Down syndrome] too, I could feel her pain, feel her raw emotion, feel her fear. But as I turned each page, I felt myself being forgiven along with her, and it's been a long time since I've felt so much relief and joy."11 Indeed, a number of online comments by readers (on bookstore websites as well as on Groneberg's site) identify the narrating of the grief as an important validation and aid to healing and family integration.12 Jane Bernstein, in the opening pages of Rachel in the World, the follow-up memoir to Loving Rachel, notes that narrating her suffering and her challenges in her first book was intentional, because in the early days of Rachel's life, "I hated the treacly language people often used when writing or speaking about children with 'special needs,' the ruffled, fluffy packaging, the compression and tidying up of a family's disarray into neat, predictable little stages" (6). She observes that, "To me, Loving Rachel was grittier and harsher than the books I found on the library shelves" (7)—and this was a choice she made as an author, because this was the kind of book she wanted to read as a parent.
My point is not, then, that the grief is invalid, inaccurate, or hurtful. My point is that many of the memoirs focus so fully and in such great detail on the grief that this is the overriding emotion of the books, even though, as recent scholarship has shown, unhappiness isn't typically the dominant emotion in families' experiences. As the second epigraph to this essay asserts, "Parenting a (disabled) child can be tiring, distressing, upsetting and heartbreaking. It can also be rewarding, affirming, enjoyable and heartwarming." The parentheses are the scholars': they are clear that their extensive interviews with parents did not demonstrate a clear qualitative difference between parenting a disabled child and a non-disabled one, although the misery articulated in the memoirs would lead a reader to believe otherwise.13 The memoirs' reliance on grief not only dehumanizes the children in the books, but it's also inaccurate based on empirical studies of families—and while the point of the memoirs isn't to provide empirically true data, they certainly can contribute to a broader cultural misunderstanding of disability.
The grief serves a dramatic function, setting off a trajectory which—by and large, but not always—ends with the parent-author recognizing and affirming the humanity of the child and the positive characteristics of the child. Indeed, the vast majority of these books offer a turning point, a point at which the parent comes to see the falsehood of the societal stereotypes about disability; sometimes this recognition of falsehood is explicit, other times more subtle. Someone might argue that the heart of the story is the turning point, the fact that the parents learn they were wrong. But because that turning point often happens near the end of the book, then the majority of the reading experience has consisted of those false stereotypes being bolstered. The bulk of most of these books is pandering to the distortions, and the turning doesn't redeem it. The unhappiness is the clearest, most fully articulated aspect of the memoirs, and often the overriding "message" of the book seems to be, as Johnson's epigraph might put it, "Thank god you don't have a child with a disability."
By following a trajectory defined by grief, memoirs repeatedly suggest—if not overtly articulate—that the child's main function in the world was or is to cause pain to the adults around him or her. This is a dehumanizing trajectory, and there are many ways in which the child's humanity is denied. Although the denial may be subtle—operating via pity, for instance—sometimes it's overt, such as in This Lovely Life, the memoir by a mother of premature twins. The children have faced a number of severe medical challenges, and one has died. After author Vicki Forman has shared with her mother that her son Evan has a very serious, life-threatening heart condition, her mother says, "What can I tell you, Vicki…The doctors who resuscitated those babies should be shot. They've left you with a severely disabled child and ruined your life and his. That's all there is to say" (156). Forman's mother has clearly dehumanized Evan, articulating that his life is of so little value that the doctors who saved him are worthy of scorn and violence. Indeed, not only is Evan's life of no value, but he is damaging, and it would be better if he were dead. Interestingly, Forman doesn't disagree with her mother on this point, here or anywhere else in the memoir. Her immediate response is to disagree with the word "disabled." She explains, "I wanted to say, You're wrong, he's not severely disabled. Maybe my life is ruined, and maybe his is too. But he is not disabled" (156-157). In this passage, Forman wasn't articulating her previous, inaccurate views about her son's humanity so that she can demonstrate to the reader how clearly she came to see the inaccuracy. Instead, these views are constantly in play, and in tension. The notion that perhaps Evan's life should have been ended—Maybe my life is ruined, and maybe his is too—is significantly dehumanizing and never fully countered. It's also worth noting that Forman felt the stigma of the word "disabled" to be so toxic that she couldn't imagine it applying to her son under any circumstances.
Another recent text, Where We Going, Daddy? Life With Two Sons Unlike Any Others by Jean-Louis Fournier (2008), offers a bleakly humorous take on parenting two children with disabilities, and the humor often comes across as a father trying to grapple with his perception that his sons aren't human. He expresses his devastation at the fact that they can't read or write, they can't have conversations with him, and although he acknowledges things they can do and enjoy (one son loves banging rhythms to songs, for instance, and the other figures out how to lie and manipulate his parents—a significant communicative accomplishment), these points, too, are presented darkly, almost as tragedies the reader should laugh at. He notes such family facts as, "Our family photo album is flat as a fillet of sole. We don't have many pictures of them, we don't feel like showing them off. Normal children are photographed from every angle, in every pose, on every occasion….They follow their progress step by step. With a handicapped child, no one really feels like following their fall" (31). The parents, then, are suffering so greatly because of their sons that they aren't even able to document their existence in a photo album or participate in the most mundane of parenting activities.
The entire book is written as an apology to the sons—an apology for them having been brought into the world "so wrong" (1). And while Fournier makes the effort to express his love for them, the book as a whole reads as a book about two beings who are not people but tragic mistakes. And it may be worth noting that books like this one receive a great deal of praise and attention: Where We Going, Daddy? was excerpted by National Public Radio shortly after it was released in the United States, and reviewer Cord Jefferson judges Fournier as writing "honestly," "admirably," and "bravely," and says, "By the final story, you'll be touched no matter what. But you'll probably also find that you're laughing at things you never thought funny before ."14 As a parent of a child with a disability, I did not find myself laughing at all as I read Where We Going, Daddy? I found the book so distressing that my partner repeatedly asked me to stop reading it.
Another way in which these memoirs struggle with the full humanization of the child is that they focus on a medicalized picture of disability. As disability studies scholars and disability activists have noted, medicine has provided a great deal of valuable help to people with disabilities, but the medical model of disability is inadequate. Scholar Simi Linton explains,
the medicalization of disability casts human variation as deviance from the norm, as pathological condition, as deficit, and, significantly, as an individual burden and personal tragedy. Society, in agreeing to assign medical meaning to disability, colludes to keep the issue within the purview of the medical establishment, to keep it a personal matter and "treat" the condition and the person with the condition rather than "treating" the social processes and policies that constrict disabled people's lives. (162)
The medical model is the most familiar model our culture offers, but in foregrounding this model and its individualized focus, parents reinforce the medicalized interpretation of the person with the disability as the problem. Some of the children have experienced medical complications that have meant the children and parents have spent a great deal of time in various medical settings, and these settings feature prominently in the books. Sometimes the descriptions appear to be striving for neutrality, while other times the parents are critical, as when Forman describes a hospital where her son Evan has an extended stay as a "Dickensian netherworld" (94).
In most of the books, however, regardless of whether the children have been hospitalized, medical assessment processes, therapeutic procedures, and labeling feature prominently. These are, of course, a primary way in which our culture makes sense of disability, and they are often among the only tools available to new parents. Often parents are desperate for a label, and a large portion of the book may reenact the parents' efforts to find out "what's wrong" with their child.15 On the whole, even if the parents do have difficulties with and complaints about the medical system, they rarely expand from these complaints into a broader consideration of the extent to which the medical model is another limited and limiting cultural construction of disability.16
Parental memoirs are often describing difficulties, but what disability studies scholars and activists would note is that the personal difficulties are intimately linked with larger cultural resources because disability is culturally constructed. As disability studies scholar Lennard Davis notes, "The body is never a single physical thing so much as a series of attitudes toward it" (237). In other words, the attitudes the families in these books encounter are often a large component of their painful experiences, although they often aren't recognized as such. Fournier's book does an (inadvertently, I think) excellent job of documenting the failures of the culture. Fournier records many of his friends' responses to his sons' disabilities, "inanities" he calls these responses, but they strike me as outrages (20). He notes, for instance, friends who told him, "I would have smothered him at birth, like a cat" (21), as well as "one of our closest friends" who was the second son's godfather but began ignoring Thomas as soon as he learned he had a disability (22). Fournier presents this information fairly flatly, and it's not clear to what extent he disagrees with this treatment, and to what extent he sees it as natural, inevitable, or simply the way things are. Furthermore, Fournier describes the braces his sons wear to support their torsos:
When you pick them up in your arms it feels like you're holding a robot. A metal doll.
It takes a monkey wrench to get them undressed at night. When you peel their breastplates off, you find purple welts left on their naked torsos by the metal stays, and all that's left are two shivering little plucked birds. (41)
This is a description of a culture which is unable to provide therapeutic prostheses that help and nurture the boys' bodies, and it's a description that does not present this as problematic. The culture itself seems to see the boys as insignificant enough that it's irrelevant that the prostheses cause pain and damage to their bodies. It was clear to me on reading this book that to large part the problems Fournier and his sons experience are not the sons' fault—they aren't evidence of the sons' failings but the failings of the larger society to provide the kinds of support that would allow this family to develop more fully and live out more of their potential. As I'll discuss below, examples from Bérubé and Ralph James Savarese show counterexamples, what it looks like if a parent indicts the broader culture rather than implying that the child's disability is to blame.
Another dehumanizing trend I noticed, particularly in memoirs in which the child has autism or other developmental delays that may be challenging to diagnose, is that "retardation" is used as the benchmark against which the child is measured. In a very early memoir, The Siege: A Family's Journey into the World of an Autistic Child (1967), Clara Claiborne Park discusses at length her fear that her daughter Elly would be "retarded," and that this would be "the very worst possibility" (32): "I had a horror of retardation. I assumed I could rise to most challenges if my children presented them, but I had wondered about that one….But apparently this was not the worst possibility. There was another. The worst diagnosis he could give us would be a different word altogether—autism" (33). Park uses her own and the broader culture's fear of "retardation" to frame the significance of her daughter's autism. If it's worse than "retardation," it must be really, really bad. As the book progresses, however, she articulates her discovery that autism is actually preferable to "retardation." Describing her daughter's interactions in a special needs preschool, she explains, "she functioned far more ably than the overgrown, affectionate Mongoloid who moved clumsily among the toys….[The students] became contributing members of the school, even if like the little Mongoloid all they could contribute was their helplessness" (171).
This sort of comparison, although much more subtly made, emerges repeatedly in more recent memoirs, as well. For instance, in the days before they knew that their daughter had cognitive disabilities, Loving Rachel author Bernstein recounts conversations in which "I tell them how I feel I have more to offer to a child who is…visually handicapped than I would a child who is retarded (I wouldn't begin to know what to do with a retarded child)" (49). This Lovely Life author Forman recounts her father saying, as a worst case scenario, "I don't know, Vicki…The baby might end up with mental retardation. It's possible" (188). As with other memoirs, the specter of "mental retardation" keeps appearing as if it's the thing to be most afraid of, the point at which all your hard work has been for nothing, the line past which your child is no longer human.
Even the rhetoric here is troubling; the term "retardation" appears in memoirs as recent as 2009. Bérubé offers a clear refutation of this rhetoric in 1996, when he writes,
But you know, there really is a difference between calling someone a "mongoloid idiot" and calling him or her "a person with Down syndrome." There's even a difference between calling people "retarded" and calling them "delayed." These words may appear to mean the same damn thing when you look them up in Webster's, but I remember full well from my days as an American male adolescent that I never taunted my peers by calling them "delayed." Even for those of us who were shocked at the frequency with which "homo" and "nigger" were thrown around at our fancy Catholic high school, "retard" aroused no comment, no protest. In other words, a retarded person is just a retard. But delayed persons will get where they're going eventually, if you'll only have some patience with them. (26)
Bérubé makes a compelling argument about the toxicity of the word "retarded" (a point many organizations advocate, as well17 ), and yet the repeated appearance of this term in this genre suggests that authors are either unaware of its toxicity or, perhaps, using the toxicity strategically. Remember Groneberg, in her moment of self-identified despair, describing herself as "the woman with the retarded son."
Even when it's not used in such a shocking way, it's often the balance: how does my child compare to a child with Down syndrome? In Not Even Wrong: A Father's Journey into the Lost History of Autism (2004), Paul Collins discusses the "Sally and Anne" test that appears in many memoirs about children with autism. The test assesses a child's ability to think from the perspective of another person, and Collins observes, "A typical three-year-old can figure it out, and indeed, in test after test they do figure it out. So, for that matter, can three-year-olds with Down's syndrome. It's not a hard question. Only…the autistic kids keep missing it" (85). This seems to be both a way of framing the difficulty of the question but also a way of letting the reader know how bad it is that Collins's son, who has autism, is unable to answer the question.18 This trend, of course, is significant because it dehumanizes people with cognitive disabilities in order to more fully humanize children with other sorts of disabilities. Authors endorse the stigma against cognitive disabilities, saying in essence, "At least my child's not like that," or, "Oh, no—my child might be like that!"
The problem, then, is that it's very easy for people—even parents of children with disabilities—to believe familiar, deeply troubling narratives about people with disabilities. Many people believe familiar narratives without even recognizing that they're doing so, and those thoughtless beliefs can have very real consequences for the ways in which people with disabilities are seen and understood in the world and our cultural assessment of their citizenship and humanity.19
Memoirs as sites of resistance
While parental narratives sometimes hijack and undermine the disability rights or disability studies perspective, political and parental functions certainly can combine in powerful ways in these memoirs. As the authors of the excellent Families Raising Disabled Children note, "Families are not simply microcosms of society or community: they exist potentially as spaces through which dominant ideas associated with autonomy, choice, individuality and freedom are understood and contested. The family allows a place to work out ways of living, drawing on and challenging ideas about childhood, disability and parenting that exist in the public domain" (McLaughlin et al 15). In other words, while families can and do reflect societal pressures and trends, they are also spaces of resistance—and their resistance can grapple with key ideas about what it means to be a citizen or even a person. Parental memoirs can demonstrate this activist function.
Although disability is incredibly pervasive—affecting almost everyone—many people are unaware of this fact and perceive disability as alien and frightening.20 This is one important reason for parental memoirs: they can provide an intimate, loving vision of disability. Philosopher Eva Feder Kittay explains of her relationship with her daughter, "it is because I see Sesha close up, because I have a deep and intimate relationship with her, that I am able to see what is hidden from those who are not privileged enough to see her when she opens up to another….Without a strong affective bond with people with severe cognitive disabilities, we often fail to get a glimpse into the lives of these persons" (Kittay Cognitive Disability 406-7). This is the potential of the genre of the parental memoir: it's the bridging of the intimate and the public that can participate in a reworking of the public discourses. These authors have the experience and the affection to challenge the misinformation that's out there. They do so in part by articulating pleasure as a counterpoint to grief, by illustrating cultural construction rather than focusing on an individualized model, and by using disability as a new lens through which to see mainstream society, not ranking disabilities in terms of their practical implications. These are all ways of fully humanizing people with disabilities.
Some memoirs do a very good job of making visible the invisible cultural constructions of disability, thus doing a disability studies and disability rights project of demonstrating that disability is less an individualized medical condition and more a cultural construct. Savarese and Bérubé are both consistent and emphatic about this. Savarese, author of Reasonable People: A Memoir of Autism and Adoption (2007), is father to DJ, who has autism. Savarese begins his book with an explanation of the cultural work his memoir will do. He cites changing medical and cultural definitions of autism and then states, "This book stands in direct opposition to the begrudging appreciation of autistic accomplishment and, even more important, to the notion of 'classical autism' as not affording 'a window' on an Autist's interior. Indeed, it demonstrates just how dynamic and human that interior can be, and it demands that we rethink the 'creature for whom very little future lies in store'" (xiv). In other words, he informs the reader that his book is in no sense grounded in grief, tragedy, or "making do"; instead, it's a self-consciously resistant book, and he alerts the reader to "the work of activism I wish this book and its author to perform" (xxix). He recognizes that the parental memoir can make powerful cultural interventions.
Collins, in Not Even Wrong, is writing as much a history as a memoir, and although his perception of autism is different than Savarese's, Collins is also committed to articulating and questioning our cultural understanding of autism. He examines the explanations given for autism, from the "wild boy" to the eccentric artist, from the "feeble-minded" hermit to the geniuses such as Isaac Newton. Ultimately he argues for an embrace of human diversity: "It was blind, brilliant, dumb luck that we had an Isaac Newton who focused on something that other people found important. There are Newtons of refrigerator parts, Newtons of painted light bulbs, Newtons of train schedules, Newtons of bits of string. Isaac Newton happened to be the Newton of Newtonian physics, and you cannot have him without having the others, too" (214). He identifies ways in which our culture engages in what Savarese calls "begrudging appreciation of autistic accomplishment," and he challenges this appreciation, calling for an acceptance of all people with autism, no matter how practical their disabilities may be to mainstream society.
Even the less overtly analytical parents—those who are less self-consciously resistant—articulate their own recognition of moments of cultural construction. For instance, Soper, in The Year My Son and I Were Born, dislikes terms like "Down syndrome child," she's irritated by people placing stereotypes on her son (she's pleased, for instance, when Thomas screams at a woman who wants to hold him because "Down's babies [are] always so happy!" (296)), and she investigates and questions the realities that institutionalization created for people with Down syndrome. She struggles a bit with her religion's perspective on disability, observing that "My new landscape of faith was beautiful yet strange" (304). She also notes toward the book's conclusion, "Thomas's diagnosis brought some inherent difficulties, like health concerns and education issues, but the stuff that really hurt didn't come from Down syndrome. It came from my reaction to Down syndrome. And that reaction was based largely on ignorance and prejudice" (303). Similarly, Daniel Mont observes in A Different Kind of Boy: A Father's Memoir About Raising a Gifted Child with Autism what a difference it made to him and his wife to read an essay by a man with autism who noted, "when parents say, 'I wish my child did not have autism,' what they are really saying is, 'I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead'" (qtd. 173).
Another contribution parents are able to make to our cultural understanding of disability is that they can articulate the happiness and pleasure that are often invisible—or hyper-sentimentalized and therefore not taken seriously—in cultural understandings of disability. Rather than emphasizing the grief, parental memoirs can make visible the pleasure. This is a point Johnson makes in her memoir: "We need to confront the life-killing stereotype that says we're all about suffering. We need to bear witness to our pleasures" (253). Some parental memoirs do this. For instance, in discussing the concept of personhood, Kittay cites an earlier piece of her writing:
I evoke a morning in my kitchen when Sesha, accompanied by her caregiver, is having breakfast, and I sneak in to give her a kiss:
Sesha, as always, is delighted to see me. Anxious to give me one of her distinctive kisses she tries to grab my hair to pull me to her mouth. Yet at the same time my kisses tickle her and make her giggle too hard to concentrate on dropping the jam-covered toast before going after my hair. I negotiate, as best I can, the sticky toast, the hair-pulling and raspberry jam-covered mouth. In this charming dance, Sesha and I experience some of our most joyful moments—laughing, ducking, grabbing, kissing.
They are "small" pleasures, to be sure, but pleasures that provide so much of life's meaning and worth that they permit the deep sorrows of Sesha's limitations to recede into a distant place in the mind; they are small joys, but are so profound that they even make me question that very sorrow. It is a pleasure that Sesha and I would have been denied if we could not share our lives together. ("Caring," 567)
Although Kittay herself hasn't written an explicit memoir about her life with Sesha, elements of this life appear in a great deal of her academic writing. Kittay effectively describes the importance of pleasure and happiness, and their invisibility to much of our society. She doesn't invoke this pleasure in an easy, sentimentalized way, to deny the grief or challenges. Indeed, she identifies the "deep sorrows" that are part of life as a parent of a child with disabilities. But she doesn't allow those sorrows to take the floor. Suffering isn't the point of her writing—it appears from time to time, of course, but, unlike many of the memoirs, her unhappiness isn't the main thing she attends to. Instead, she describes what to many readers might be an unusual morning ritual, one that is clearly affectionate, playful, and funny.
I believe it's worth noting that the messiness and unusualness of this morning ritual could easily be framed by our culture's formulaic narratives as tragic and pitiful, but Kittay is emphatic that this is not the meaning this practice holds for her or her daughter. It is "charming," "joyful," and a joy that is "profound." Moments like this are predictable in memoirs by parents of typical children, but unexpected from a mother of a child with a disability. It is a morning pleasure that allows both parties to enact and experience the love they have for each other, and by describing and understanding the pleasure in the way she has, Kittay is challenging the stereotypes, particularly the rhetoric of tragedy and grief.
The pleasures are crucial. They proliferate in a small number of the memoirs; Life As We Know It, for instance, is a book filled with such delight that no reader can leave it with the sense, "Thank god I don't have a kid with a disability." The narrative briefly touches on parental grief, but this takes up less than five pages in the book, and the challenges Bérubé and Janet Lyon face are consistently contextualized in terms of parenthood in general and/or the social construction of disability. One of the main emphases of the book is pleasure, and this is evident in the book's first sentence. A surprising number of memoirs' first sentences let the reader know to expect ambiguity, uncertainty, and pain. Some are subtle: Loving Rachel begins, "It is the kind of summer day that New Jersey is known for, with air that is thick and still unbearably hot." Similarly, "It's hard to know where to begin" is the first sentence of Road Map to Holland. The Year My Son and I Were Born offers the clearly negative beginning, "No. Oh, no," while This Lovely Life starts with "I learned about grief during this time." In contrast, Life as We Know It begins, "My little Jamie loves lists." Of all the memoirs I've read, this is the most positive introductory sentence, one that offers a great deal of insight: the characterization of the child as "my little Jamie" conveys love, even adoration. He's unequivocally identified as the author's child; and it's worth noting that Jamie is clearly a child—not an "it," a defect, an anomaly, as many of the narratives characterize the children for at least part of the narrative. And he's a child with individuality and preferences that the parent recognizes. As a parent myself, this was an opening sentence that excited me: I immediately recognized that this book would offer much of the hope, humanization, and validation that I was seeking.
Bérubé continues to contextualize Jamie's life in terms of pleasure, as when he describes Jamie and his older brother, Nick: "Nick was, and still is, his chief cheerleader. Watching his delight in watching Jamie's progress quickly became, for me, one of the primary delights of being alive, and it was clear that Jamie felt more or less the same way. As did Janet" (125). He describes Jamie's slow development as something funny and wonderful, while still noting the challenges. In comparing Jamie's development to his brother Nick's, Bérubé observes that "Jamie, by contrast, was not only slower but elaborately slower" (127). In describing Jamie's efforts to learn to see and grab an object, Bérubé reports that he and Janet referred to him as "World's worst predator" (128). Here Bérubé does not sentimentalize or overly dramatize the challenges facing Jamie and his family; he acknowledges the intense work a child with a disability such as Down syndrome will have to do, but he frames this work not merely as a cause for parental grief but also as a reason for celebration—and amusement.21 The first time I read Life as We Know It, I laughed rather than felt devastated at Jamie's "world's worst predator" moniker, because I had experienced the same phenomenon with my daughter—and because Bérubé recounts it as a funny family experience, not a tragedy. In Life as We Know It, parenting a child with a disability is complex, rich, and far more pleasurable than grief-stricken.
Similarly, Savarese recounts the difficulties he and his wife experienced in adopting DJ, whom he describes as "The boy who had filled our hearts with love beyond bursting. Picture brightly colored helium balloons painting the horizon, floating above the hills of central Iowa. Can we be this full? Can we go this high?" (265). Raising DJ is challenging, of course, but having him as part of their family is an unadulterated joy. Indeed, a number of parents describe the pleasures that are intimately linked to the challenges they and their children have faced. When Kephart's son Jeremy, who has pervasive developmental disorder, learned to speak and describe his world, Kephart experienced a new level of parenting pleasure: "Talking with Jeremy about the way his mind works became another port of entry. It became some of the most satisfying conversation I will ever have, one of the many privileges I have as a mother to my son" (239). Similarly, Forman describes the pleasure in her own life that emerges from her own struggles with the notion of her son's disabilities. She explains, "This year, I could begin to see the boy emerging beyond the disabilities. On a cool fall day in my friend Susan's backyard, my son gave me his first smile. It had been nine months since he'd been home, and when I saw his baby gums for the first time, his lips pressed open in a full grin, I cried" (233). A number of authors describe simple, pleasurable interactions with their children, such as when Groneberg explains a bathtime encounter: "Avery has taken the little green ninja from Bennett. Avery puts the ninja in the plastic teddy bear and smiles, then laughs. The ninja inside the bear! He lifts it up to show me. Laugh laugh laugh. Avery's laugh makes me laugh, too" (222). It's difficult to offer a representative quotation from these descriptions, because they're often describing uneventful, non-dramatic moments—and that's the point. These moments aren't necessarily offered as explicit challenges to social expectations, but they function in that way, destigmatizing and humanizing disability.
Most of the narratives I've read—although not all—eventually portray children with disabilities as full, significant, valuable human beings, worthy of love and respect. Toward the end of George and Sam: Two Boys, One Family, and Autism, author Charlotte Moore offers a chapter called "Compensations" in which she writes, "I learned, long ago, that loving children like these had to be unconditional. That's true of loving all children, actually, but with autism you quickly learn that you can't look for gratitude or reciprocity….This wasn't a hard lesson to master. Loving them is the easy part. They're very loveable. Luckily, I'm not the only person who feels this" (275). Moore both normalizes the work of being a parent to her children ("that's true of loving all children") and even after acknowledging slight differences in loving children with autism and non-disabled children, she stresses that this is "the easy part" because her sons are "very loveable." Although her chapter title is somewhat ambiguous (suggesting, perhaps, that there need to be ways in which parents are compensated for the difficult work of raising children with autism), she, like other memoir authors, affirms the humanity of her sons by affirming her love for them.
Some memoirs take the next step and use their child's experiences as a new lens through which to view the world. Their reframing of disability has allowed them to envision personhood itself—"autonomy, choice, individuality and freedom" (McLaughlin et al 15)—differently. Bérubé does this repeatedly, offering Jamie as a human prototype, a model who helps to illustrate essential human qualities. For instance, he notes, "Jamie would not grow up on his own, any more than you or I did…. He would realize his individual potential only by leaning on our mutual human interdependence—just like everyone else, only a bit more so" (176). This is a point made repeatedly by Kittay.22 Parents interviewed for Families Raising Disabled Children make the same argument: they articulate the importance of interdependence as a human condition, and that it should be recognized as part of what it takes to be a citizen and a full person (196). Parents, then, in the ways they frame and represent their children, can offer a philosophical challenge to the notion of independence as a crucial quality necessary for defining personhood. They can be part of the disability studies and disability rights efforts to reconsider what it means to be fully human.
These memoirs can also be a lens on social justice, and what it means to create a society that is just. Savarese is articulate on this point, using DJ's experience as a case study for our cultural failings. He argues, "We give up on people way too easily—and not just the cognitively disabled, but all sorts of folks, especially children. (Or worse, we never even try to begin with.) 'I dream about life,' DJ says. 'I wonder what i will become of myself.' Surely, a just world would devote itself to equal opportunity dreaming and becoming" (286). Other authors use disability as a way to call for greater compassion, as when Kephart writes, "We are thrown together on a temporary planet, and the only thing we have to protect ourselves from the fury of our fate is kindness incarnate, small acts of grace" (232).23 Whether framed as compassion or as a more pointed call for a just world, these parental memoirs can—and should—be activist texts.
My point is not to suggest that parenting a child with a disability shouldn't be portrayed as challenging. Of course it's challenging, as is all parenting. The child's disability will present particular challenges, as may the lack of supports and the societal stigma with which the family has to negotiate. One of the important roles of these memoirs may be to articulate these challenges. Further, I don't argue that the memoirs should play into a particular happy ending formulaic narrative, what Clara Claiborne Park refers to as "the success story everybody wants to hear" (Exiting Nirvana 24).24 Savarese makes a similar point, noting, "The problem with concluding a memoir of disability on a note of triumph is perpetuating the primary cliché of the genre" (Savarese, 429). The success story narrative is as flattening as many of the others I've critiqued.
What I'm arguing that these memoirs should do, and what many of them are already doing to greater or lesser extents, is to participate in the process of rewriting the cultural meanings associated with disability.
The cultural activity of rewriting life stories and kinship narratives around the fact of disability…enables families to comprehend (in both senses) this anomalous experience, not only because of the capacity of stories to make meaning but because of their dialogical relationship with larger social arenas….In other words, the way that family members articulate changing experiences and awareness of disability in the domain of kinship not only provides a model for the body politic as a whole but also helps to constitute a broader understanding of citizenship in which disability rights are understood as civil rights. (Rapp and Ginsburg, 189).
Parents of children with disability have a significant role, that of changing the cultural meaning of disability, and therefore the broader understanding of citizenship and civic identity. These parents can be knowledge producers. Through their intimate, loving relationships with their children, they can develop and communicate a critical stance on mainstream culture.25
More basically, I would say that these memoirs can help to make people with disabilities visible as people. Parent memoirists have a particular set of experiences that make them both knowledgeable and compelling narrators. They are allowed to say things that others might not be able to say. Because of our culture's general respect for parenthood, they are allowed to observe and critique and to offer an intimate as well as public articulation of how our culture misrepresents disability. Further, they can describe what it might mean to view disability through the perspective of love, hope, high expectations, and positive evaluation. These are perspectives that our cultural moment very much needs to hear.
- Bernstein, Jane. Loving Rachel: A Family's Journey from Grief. Urbana: University of Illinois Press, 1988.
- ---. Rachel in the World. Urbana: University of Chicago Press, 2007.
- Bérubé, Michael. "Equality, Freedom, and/or Justice for All: A Response to Martha Nussbaum." Cognitive Disability and Its Challenge to Moral Philosophy, eds. Eva Feder Kittay and Licia Carlson. West Sussex, UK: Wiley-Blackwell, 2010: 97-109.
- ---. Life As We Know It: A Father, a Family, and an Exceptional Child. New York: Vintage Books, 1996.
- Collins, Paul. Not Even Wrong: A Father's Journey into the Lost History of Autism. New York: Bloomsbury, 2004.
- Couser, G. Thomas. Signifying Bodies: Disability in Contemporary Life Writing. Ann Arbor: University of Michigan Press, 2009.
- ---. Vulnerable Subjects: Ethics and Life Writing. Ithaca: Cornell University Press, 2004.
- Forman, Vicki. This Lovely Life: A Memoir of Premature Motherhood. Boston: Mariner Books, 2009.
- Fournier, Jean-Louis. Where We Going, Daddy? Life with Two Sons Unlike Any Others. New York: Other Press, 2008.
- Groneberg, Jennifer Graf. Road Map to Holland: How I Found My Way Through My Son's First Two Years with Down Syndrome. New York: New American Library, 2008.
- Johnson, Harriet McBryde. Too Late to Die Young: Nearly True Tales from a Life. New York: Picador, 2005.
- Kittay, Eva Feder. Love's Labor: Essays on Women, Equality, and Dependency. New York: Routledge, 1999.
- ---. "When Caring Is Just and Justice Is Caring: Justice and Mental Retardation." Public Culture 13(3), 2001: 557-579.
- Kephart, Beth. A Slant of Sun: One Child's Courage. New York: Quill, 1998.
- Landsman, Gail Heidi. Reconstructing Motherhood and Disability in the Age of "Perfect" Babies. New York: Routledge, 2008.
- McLaughlin, Janice, Dan Goodley, Emma Clavering, and Pamela Fisher. Families Raising Disabled Children: Enabling Care and Social Justice. London: Palgrave Macmillan, 2008.
- Mills, Bruce. " 'Nothing about Us, without Us': Weather Reports from the Autism Front: A Father's Memoir of His Autistic Son by James C. Wilson and The Only Boy in the World: A Father Explores the Mysteries of Autism by Michael Blastland." Disability Studies Quarterly 30.1 (2010), http://www.dsq-sds.org/article/view/1049/1249.
- Mintz, Susannah B. "Side by Side: Life-Writers on Disabled Siblings." New Essays on Life Writing and the Body. Eds. Christopher Stuart and Stephanie Todd. Newcastle upon Tyne: Cambridge Scholars Publishing, 2009, 241-260.
- ---. Unruly Bodies: Life Writing by Women with Disabilities. Chapel Hill: University of North Carolina Press, 2007.
- Mont, Daniel. A Different Kind of Boy: A Father's Memoir About Raising a Gifted Child with Autism. Philadelphia: Jessica Kingsley Publishers, 2002.
- Moore, Charlotte. George and Sam: Two Boys, One Family, and Autism. New York: St. Martin's Griffin, 2004.
- Park, Clara Claiborne. Exiting Nirvana: A Daughter's Life with Autism. Boston: Little, Brown and Company, 2001.
- ---. The Siege: A Family's Journey into the World of an Autistic Child. Boston: Little, Brown and Company, 1967.
- Rapp, Rayna and Faye Ginsburg. "Enabling Disability: Rewriting Kinship, Reimagining Citizenship." Going Public: Feminism and the Shifting Boundaries of the Private Sphere. Urbana: University of Illinois Press, 2004: 178-200.
- Rummel-Hudson, Robert. Schuyler's Monster: A Father's Journey with His Wordless Daughter. New York: St. Martin's Griffin, 2008.
- Savarese, Emily Thornton, and Ralph James Savarese. "'The Superior Half of Speaking': An Introduction." Disability Studies Quarterly 30.1 (2010), http://www.dsq-sds.org/article/view/1062/1230.
- Savarese, Ralph James. Reasonable People: A Memoir of Autism and Adoption. New York: Other Press, 2007.
- Soper, Kathryn Lynard. The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood, and Self-Discovery. Guilford, CT: Globe Pequot Press, 2009.
Autobiography scholar G. Thomas Couser notes, "Although it is often not recognized as such, eluding most critics' radar, disability has become one of the pervasive topics of contemporary life writing" (Signifying 3).
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For instance, Rachel in the World received glowing reviews from Kirkus Reviews, Booklist, and Library Journal. Not Even Wrong received positive reviews from major newspapers as well as Vanity Fair and Entertainment Weekly. Several of these memoirs have been award-winners: Life As We Know It was a New York Times Notable Book of the Year, A Slant of Sun was a National Book Award finalist, and This Lovely Life was named Winner of the PEN Center Literary Award in Creative Nonfiction and the Bread Loaf Writers Conference Bakeless Prize in Creative Nonfiction and was chosen as one of the best 100 books of 2009 by the San Francisco Chronicle.
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Note that Couser examines the larger trend, and other scholars—such as Susannah Mintz—examine other cohorts writing such memoirs (Mintz, for instance, examines authors who have disabilities as well as sibling narratives). No one, however, has examined the parent memoir as a genre. In a book review essay, Bruce Mills offers a brief and compelling analysis of two memoirs by parents of children with autism (http://www.dsq-sds.org/article/view/1049/1249).
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It seems that this particular set of problems emerges in this genre specifically. I haven't noticed the same tendencies in collections of parent essays, such as My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities (eds. Yantra Bertelli, Jennifer Silverman, and Sarah Talbot, PM Press, 2009), or in all blogs by parents of kids with disabilities. Ralph James Savarese and Emily Thornton Savarese, however, note that "parent bloggers and autism organizations" do "perseverate on the difficulties" of raising a child with autism (http://www.dsq-sds.org/article/view/1062/1230).
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Couser notes that disability memoirs have an activist tendency: "What links these books is the fundamental endeavor to destigmatize various anomalous bodily conditions. Disability memoir should be seen, therefore, not as spontaneous self-expression but as a response—indeed a retort—to the traditional misrepresentation of disability in Western culture generally" (Couser Signifying 6-7). More specifically discussing parental memoirs, he claims, "In most [parental narratives of disabled children], political and parental functions are one: the narrator's role as advocate for children with disabilities is an extension of his or her role as parent" (Vulnerable 69). Similarly, Susannah Mintz notes "autobiography might reinvent disability, for readers as much as writers, in dramatically liberatory ways" (Unruly Bodies 22). But this isn't what happens in most parent memoirs, and despite Couser's optimism about these memoirs, he, too, expresses concern about the political effects of a parental memoir which "describes people like you as not quite human and that is devoted explicitly to preventing the future (re)production of people like yourself?" (Vulnerable 68). Interestingly, Couser does not offer examples of the parental memoirs which demonstrate advocacy.
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Michael Bérubé articulates the importance of cultural narratives, explaining, "Part of the burden of representation, for human populations that have long been 'dehumanized,' is precisely to demonstrate that 'dehumanized' people do in fact have feelings and dreams—just as you do" (255).
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Angel Unaware, Dale Evans.
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Twelve of the nineteen monographs I've read have been published since 2000: Rachel in the World, Jane Bernstein (2007), Not Even Wrong: A Father's Journey into the Lost History of Autism, Paul Collins (2004), This Lovely Life: A Memoir of Premature Motherhood, Vicki Forman (2009), Where We Going, Daddy? Life with Two Sons Unlike Any Others, John-Louis Fournier (2008), Rescuing Jeffrey, Richard Galli (2000), Road Map to Holland: How I Found My Way Through My Son's First Two Years with Down Syndrome, Jennifer Graf Groneberg (2008), A Different Kind of Boy: A Father's Memoir About Raising a Gifted Child with Autism, Daniel Mont (2002), George and Sam: Two Boys, One Family, and Autism, Charlotte Moore (2004), Exiting Nirvana: A Daughter's Life with Autism, Clara Claiborne Park (2001), Schuyler's Monster: A Father's Journey with his Wordless Daughter, Robert Rummel-Hudson (2008), Reasonable People: A Memoir of Autism and Adoption, Ralph James Savarese (2007), and The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood, and Self-Discovery, Kathryn Lynard Soper (2009). Of the additional six, three were published since 1995: Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic, Martha Beck (1999), Life as We Know It: A Father, a Family, and an Exceptional Child, Michael Bérubé (1996), and A Slant of Sun: One Child's Courage, Beth Kephart (1998). Only five were published before 1995 and function as texts that helped to establish the genre: Loving Rachel: A Family's Journey from Grief by Jane Bernstein (1988), Angel Unaware: A Touching Story of Love and Loss by Dale Evans (1953), Cara: Growing with a Retarded Child by Martha Moraghan Jablow (1982), Before and After Zachariah: A True Story about a Family and a Different Kind of Courage by Fern Kupfer (1988), and The Siege: A Family's Journey into the World of an Autistic Child by Clara Claiborne Park (1967). All but two of these texts were written by parents in the United States; Where We Going, Daddy? is French, and George and Sam is British.
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Couser talks about this consent issue, as does Mintz, and some of the memoirists do, as well. Savarese gets DJ's consent and has DJ write the book's last chapter. Jamie is too young at the time that Bérubé publishes his book, but he explains his hopes to have Jamie write a follow-up later (and this is a point that arose from time to time on Bérubé's blog). Many of the memoirists, though, seem to have no sense of the need to gain consent.
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Nine of the nineteen memoirs were written by academics. The fact that all the memoirists in this study are white and middle-class suggests nothing about the distribution of disabilities throughout a population but, instead, suggests that certain parents have the idea, the inclination, and the support to be able to write a memoir while raising a child.
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Comment on Amazon.com by "A.Jupin 'fellow mom'" (http://www.amazon.com/review/R3MA0VNEMAJCX/ref=cm_cr_rdp_perm)
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Not all parents who read such books value the grieving tone, however. One mother interviewed by McLaughlin et. al. said of a memoir she'd read, "I got this book after I had Luke, I was pleased I didn't get this when I was pregnant; it was the story of this girl and this mum and it was all how the mum felt, how she felt sorry for herself and it was about the girl growing up and how the mam found it difficult and, I found it a very selfish book" (171).
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McLaughlin et al note that recent research has demonstrated that, in terms of "psychological trauma and suicidal thoughts…no actual difference existed between parents of disabled and non-disabled children" (14). Indeed, there is now evidence that having a child with a disability adds life skills to parents and siblings.
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Review: http://www.npr.org/templates/story/story.php?storyId=129253491, excerpt: http://www.npr.org/templates/story/story.php?storyId=129178649. Other memoirs have received similar acclaim.
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For example, Kupfer's Before and After Zachariah, Kephart's A Slant of Sun, Forman's This Lovely Life, Rummel-Hudson's Schuyler's Monster, and Bernstein's Loving Rachel are all books that document this extended process of trying to "pin down" the child's diagnosis.
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Bérubé notes, "I suspect that there may be something wrong about a sociomedical apparatus that devotes so much of its resources to indentifying Down syndrome in utero, instead of devoting resources to finding out how to treat Down syndrome symptomatically ex utero" (76).
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For instance, national Down syndrome organizations have targeted the term "retarded": National Down Syndrome Society: http://www.ndss.org/index.php?option=com_content&view=article&id=62:prefferred-language-guide&catid=35:about-down-syndrome&Itemid=84, National Down Syndrome Congress: http://www.ndsccenter.org/?page_id=866 The Associated Press stopped using the term in 2008, and in 2010 legislation was approved that removed the term from all federal documents, replacing it with "intellectual disability."
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Charlotte Moore makes comparisons between autism and Down syndrome, as well, although hers seem more to be arguing that Down syndrome is easier for the family than autism (210, 279).
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In 1994, philosopher Peter Singer wrote, "to have a child with Down syndrome is to have a very different experience from having a normal child. It can still be a warm and loving experience, but we must have lowered expectations of our child's ability. We cannot expect a child with Down syndrome to play the guitar, to develop an appreciation of science fiction, to learn a foreign language, to chat with us about the latest Woody Allen movie, or to be a respectable athlete, basketballer or tennis player" (213). In the book Cognitive Disability and Its Challenge to Moral Philosophy, Bérubé reprints an exchange between himself and Singer in which Bérubé clearly (and with more kindness than I might muster) articulates that the cultural understanding of what "we cannot expect," where Down syndrome or other cognitive disabilities are concerned, is fairly arbitrary, but with significant repercussions (Bérubé, "Equality," 107). In her memoir, Harriet McBryde Johnson recounts a similar encounter with Singer, who made the argument that people with significant physical disabilities lack the ability to enjoy pleasures such as visiting the beach—despite Johnson's own stories about playing on the beach as a child. Even basic, factual information can be completely missed when people believe the stereotypes. As Johnson explains, "When bigotry is the dominant view, it sounds like self-evident truth" (54).
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As Rosemarie Garland-Thomson explains, "Each one of us ineluctably acquires one or more disabilities—naming them variably as illness, disease, injury, old age, failure, dysfunction, or dependence. This inconvenient truth nudges most of us who think of ourselves as able-bodied toward imagining disability as an uncommon visitation that mostly happens to someone else, as a fate somehow elective rather than inevitable. In response, we have refused to see disability" (Staring 19).
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"Every step would be prolonged and arduous, every triumph precious and magnified" (139).
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Kittay is widely recognized for her important work articulating dependence as a foundational human characteristic, especially in Love's Labor.
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Anthropologist Gail Heidi Landsman has found a similar political phenomenon among mothers of children with disabilities: "[A] number of mothers in the study describe a personal transformation in terms not only of rejecting the binary of normal/abnormal, but of embracing the very qualities in their child that are labeled by society as abnormal. The child's impairment is in this interpretation not relegated exclusively to a biology separate from the self, but rather is understood as integral to the child and infused with meaning" (207).
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Interestingly, even as Park herself resists this narrative, one of the reviews of her book proclaims "her story is nonetheless one of triumph" (Megan Rutherford, Time, back cover of the book). The formulaic narratives die hard.
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Landsman suggests that "what mothers of disabled children have come to know can be used to further our understanding of humanity and to promote the expression and experience of full lives for all people" (173).
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