Winter 2008, Volume 28, No.1
Reasonable People by Ralph Savarese, a professor of English at Grinnell College in Iowa, can be distinguished from many of the other memoirs by parents of children with learning disabilities by its lack of what disability rights activist Harriet McBryde Johnson would term “sentimental pap.” As Savarese states, “This is not a Disney story.” The book’s first fifteen chapters — gripping reading — delineate how Ralph and his wife, Emily, adopted DJ, a boy with autism, at a young age. He was a ‘low-functioning,’ non-verbal child of an alcoholic mother and a father who abandoned him. Painfully separated from a loving sibling, DJ had been placed, or rather misplaced, by Florida’s Department of Children and Families in a wildly inappropriate foster-care setting where his guardians knew nothing about autism and where he wound up being so badly beaten he had to be hospitalized.
The first third of the book depicts the years of difficult emotional struggle with the birth family and Ralph and Emily’s efforts to help DJ recover from the trauma of abuse. The remaining two thirds are devoted to how they taught him to communicate. Ralph and Emily spent three or four years with him in painstaking literacy preparation, using primarily photographs and other stimuli (not phonics) to inculcate the concept of representation. Body therapy, occupational therapy, and various other modalities also contributed to the development of literacy. Reasonable People extends to its considerable length precisely because it lays out in detail how DJ broke the code of reading. When they had first adopted him, he had been unresponsive to spoken language, but once he could read, he found such language discernible.
Reading this book, one is reminded of the early nineteenth-century account by the Frenchman Jean Mark Gaspard Itard of his unsuccessful attempt to teach language to the ‘feral’ boy found in the woods near Aveyron. What Itard did not have was access to technology. At around the age of nine, DJ was introduced to Facilitated Communication (FC). Entailing a laptop with amplified memory and voice software, FC can, given much effort and certain conditions, allow a nonverbal autist to speak. Initially, the FC technology was greeted with euphoria because of its possibilities to release a class of people perceived to be nonverbal into communication. People jumped to the conclusion that every person with autism was ready to communicate through FC. However, the exaggerated claims were discredited in the 1990s and a reaction set in: in the view of professionals, FC became associated with desperate parents’ ‘wishful thinking.’
Savarese passionately counters FC’s detractors, and with good reason, for the record of DJ’s progress stands as testimony to the fact that his son has used FC effectively. DJ is fully mainstreamed in the ninth grade (he is 14 or 15 now) of a Grinnell public school, and last year he was a straight-A student. Savarese questions many of the culturally fabricated assumptions concerning autism. He forcefully calls for a paradigm shift in the way medical professionals, psychologists, educators, parents of autistic children, and the public at large conceive of the condition. Specifically, he envisions reevaluating the notions of a ‘low functioning,’ incompetent autist at one end of the spectrum and of a romanticized, high level Asperger’s type at the other, suggesting that in lieu of these, people should consider “what is possible.” If his and Emily’s vision sounds optimistic, even utopian, it also is rooted in experience and the evidence of DJ’s
It is likely that some will view Reasonable People as strident: while he was assembling the manuscript, a publisher offered to pay a significant advance if only he would tone down the rhetoric — make the memoir less political — and transform it into a heartwarming, inspirational tale about disability being a matter of isolated, individual struggle leading to eventual triumph. To his great credit, he refused the offer and instead completed the book he set out to write, namely, one addressing the public’s role in disability and society’s responsibilities to all of its citizens.
Intelligently engaging narratives by parents of disabled children (such as this one) have been few, for such dramatic personal stories charged with wrenching emotion too often sink into self-absorbed pathos. Still, exceptions do exist, and one looks for comparisons. (For a comprehensive discussion of the “parental memoir,” see Mark Osteen’s “Autism and Representation: A Comprehensive Introduction” in Autism and Representation, ed. Mark Osteen, New York: Routledge, 2008, pp. 1- 47.)Both literate and witty is Martha Beck’s 1999 Expecting Adam, a story about raising a child with Down Syndrome in a Harvard milieu. And there is the 1996 Life As We Know It by Michael Bérubé, a professor of literature and cultural studies at Penn State and a parent of a child with Down Syndrome. Bérubé discusses not only what life is like with his son Jamie but also genetics, abortion, social Darwinism, right-wing politics, St. Augustine, Descartes, Freud, and Foucault. Life As We Know It is one of the few instances of the genre to include an index. Savarese did not include one, though he doesuse endnotes.
The most fitting text with which to compare Reasonable People would the 1995A Healing Family by Kenzaburo Oe, the Nobel Prize winning Japanese novelist and father of a child with a learning disability. This is not to say that the two match exactly. They definitely differ in heft: the finely crafted Healing Family, totaling 146 pages, can be read in a single sitting while Reasonable People, a 460-page tome, occupies the bedside table for at least a week. Duration aside, the resemblance between them can be traced, first, to the deep commitment each exhibits with regard to championing human rights and especially the right of people with mental disabilities to full social inclusion. And second, each refuses to conduct a monologue, for both open a space for the children to participate. Participating does not mean that their fathers merely quote them; instead, the sons of Oe and Savarese fill their own pages. Oe’s son, Hikari, was born in 1963 with a herniated brain; Oe was told that his son might never be more than a
“human vegetable,” and for many years he needed almost constant care. Even so, Hikari developed talents in music and art, and A Healing Family not only describes how he acquired these abilities but also includes color reproductions of ten of his drawings.
That Hikari holds forth on his own is hardly inconsequential, for, in light of the conventions and limitations of the parental memoir and the history of and assumptions associated with non-verbal intellectual disability, the question of who speaks presses urgently. Since the eighteenth century, the criteria for human species membership have been determined in great part by mental capacity and especially linguistic capability. Whether those in whom linguistic capability is compromised will be accorded a full set of human rights surfaces as the foremost question whenever non-verbal cognitive impairment comes under scrutiny. Indirectly addressing the issue is Gayatri Spivak’s 1988 essay “Can the Subaltern Speak?” in which she investigates whether the historically marginalized, colonized people truly are empowered to speak. For Spivak, the subaltern must be able to voice challenges to mistaken assumptions. Especially in the last thirty years, people with physical disabilities at least have spoken up for themselves through disability autobiography. G. Thomas Couser describes this genre as “an anti-colonial phenomenon, a form of autoethnography, as Mary Louise Pratt has defined it: ‘instances in which colonized subjects undertake to represent themselves in way that engage with [read: contest] the colonizer’s own terms.’” If people with physical disabilities can represent themselves and ‘talk back’ to the hegemonic ablist culture through autobiography, how is a non-verbal person with a mental disability to do the same? In the grown-up-driven genre of the parental memoir, the adult speaks for the child. Consequently, with regard to these memoirs, a central concern for a reader coming from a disability rights perspective will be the degree of contact afforded between reader and child by the mediating parent-author.
Savarese follows Oe’s lead by opening a space for DJ to present himself to the reader: the young man contributes the sixteenth and final chapter entitled “It’s My Story!” The memoir’s first fifteen chapters really serve as prologue, explaining how DJ’s chapter came to be written. It is from this section in fact that the title Reasonable People derives; DJ writes, “I’m reasonable. Polite people make me feel comfortable. Which by the way isn’t very often. Reasonable people promote very very easy breathing. Fearful creatures sadden me.” Of the way he should be treated, he states, “People need humanitarian approaches to my hurt mind.” Of the self-esteem beginning to shape up within him, he proclaims that “Unhurt, responsible, persevering, humorous, mighty people are helping my real, kind, mighty, very smart self.” In another passage he associates himself with the civil rights movement, and in another he contests the culturally fabricated assumptions of the neurotypical majority about people like him. At one point he even ‘talks back’ to his former teachers in Florida, criticizing them sharply with regard to the education he received: “[Y]ears of easy lessons were wasted. Why weren’t you teaching me to talk, to read and to write? All you had to do was awesomely encourage me as smart and really kind, and fresh start could have begun sooner.”
What G. Thomas Couser observes of such texts as the 1994 Count Us In:Growing Up with Down Syndrome by Jason Kingsley and Mitchell Levitz could be extended to DJ’s chapter: “the very existence of first-person narratives makes its own point: that people with condition ‘X’ are capable of self-representation. The autobiographical act models the agency and self-determination that the disability rights movement has fought for.” Like Spivak’s subaltern, the purportedly nonverbal person with an intellectual disability not only can but will speak. In at least four ways this book makes a significant contribution to the national conversation on autism and to Disability Studies. First, “It’s My Story!” can be excerpted and read as a freestanding essay, perhaps in some future anthology of writing by people with learning disabilities. But even if such an anthology never materializes, this powerful piece of first-person exposition should find its way onto the reading lists of university-level Education and Cultural Disability Studies courses. It may be appropriate high school reading as well. Second, the book in its entirety can educate parents, teachers, and psychologists, encouraging them to experiment with Emily and Ralph’s techniques that worked so well with DJ. Third, it will reawaken interest in FC, by means of which DJ has been empowered to contest his supposedly ‘non-verbal’ status. And fourth, those who read it will be forced to think twice about the various conventional wisdoms associated with autism, to expand their thinking, and in the end, hopefully, to reconsider “what is possible.”