A WILL TO TELL: AUTOETHNOGRAPHIC RESEARCH ON LIFE NARRATIVES OF A CHILD WITH A DEVELOPMENTAL DISABILITY

By

ALISON HARKIN

Integrated Studies Project

submitted to Dr. Carolyn Redl and Professor Reinekke Lengelle

in partial fulfillment of the requirements for the degree of

Master of Arts – Integrated Studies

Athabasca, Alberta

December 2009

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A Will to Tell:

Autoethnographic Research on Life Narratives of a

Child with a Developmental Disability

My eleven-year-old son, William, was born with a rare, unnamed chromosomal

disorder that led to a diagnosis of moderate developmental disability and autism when he

was five. He did not talk much until he was about three years old. Even now, his speech

is considered delayed, deficient, and concrete, and an indication of permanent intellectual

impairment. He uses repetitive fragments of speech that are usually in the present tense

and often focus on or circle back to a single dominant theme. These fragments are

punctuated by long silences and flapping and swooping body movements—his preferred

way of expressing himself, whether he is with others or playing by himself. For years I

have wanted to understand better what he is trying to communicate, to listen closely

enough to hear his stories, and to encourage him to share these stories. The

poststructurally informed (Gannon 269) and analytical autoethnography (Leon Anderson

374) described in this paper is my attempt to recognize, communicate, and analyze

William’s life narratives. This I have done with his participation and permission. I also

examine how I and other family members react to the narratives and participate in them,

and how we all are shaped by and resist certain dominant discourses about developmental

disability. By extension, the purpose includes revealing that a variety of stories may exist

for other people like us: those with developmental disabilities and their families. 1

This attempt arose from my reading of dozens of books and articles about developmental disability, which led me to mourn the dearth of “[g]limpses into the feelings and thoughts of retarded individuals” (Korbin 19). Ann Fudge Schormans points

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out that there are countless lost personal histories of developmentally disabled people

(118); they have been lost because these children and adults are objectified in textbooks, school, medical, and government reports, characterized by an assumed inability to think as well as the rest of “us” (Angrosino 38), and slotted into “a grand narrative of deviance, lack, and tragedy” (Roets, Goodley, and Van Hove 325). Contributing to the loss is the way in which those of us closest to them, their family members, are encouraged to accept expert advice and professional “supports,” and to apply “appropriate strategies” (Harris

145) to ensure that the “disability”—often evidenced by the person’s way of expressing herself or himself—is silent and as invisible as possible (Murray 195). Thus they become, in many ways, colonized people: “they” are considered “other” (Ashcroft, Griffiths, and

Tiffin 172), unlike “us,” and “for that reason [deserve] to be ruled’ (Said xi), civilized, and controlled so that they do not disrupt or challenge the dominant culture and its discourse about developmental disability as a deficiency. They are lumped into a group subject to “‘screens of ideology’” that link their constructions to the world of resources, status, and power” and hide individual persons (Trent 278).

Resisting such dominant narratives and finding the “counter-stories” are important if the life stories of marginalized people, including those with developmental disabilities, are not to be considered deficient. Creating and preserving their auto/biographical narratives is one way of exposing a disability (or perhaps “counter- disability” is a better word) culture: the “hidden spheres of culture, social interactions, and individual perceptions” (Fudge Schormans 113) of these subjugated and silenced people. Only then will we recognize people with developmental disabilities “as both

‘shaped by’ and ‘shapers of’ their world” (111), and participants in the community they

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share with those of us considered “normal.” In other words, recognizing these stories is a

way of challenging the general belief that they cannot speak for themselves and that their

lives must be directed by others more knowledgeable—a task that is challenging because it can be difficult to “hear” those stories. Although the narratives of the world may, as

Roland Barthes says, be “numberless” and present among “[a]ll classes, all human

groups” (“Introduction” 251), not all are valued or even acknowledged. In her discussion

of discursive structures, Sara Mills explains that, historically, the language of “mad”

people (a group to which the developmentally disabled were once considered to belong)

has been disregarded. Even today, the “language of schizophrenics, for example, is not

given credence” (59). When people who are considered mad speak out,

…they are not heeded; if they make requests for particular types of

treatment which are not favoured by those in authority they are generally

ignored. It is assumed that the wishes and views of “rational” people, such

as doctors and social workers, carry more weight. (59)

Thus the voices of the mad, the developmentally disabled, or otherwise disenfranchised

people are lost. Further, the “authoritative” discourse perpetuates the “complex of

expectations and practices that produces socialization for incompetence”—the restrictions

that start in childhood and increasingly circumscribe the lives of the developmentally

disabled (Edgerton 122). These restrictions represent a loss; when developmentally

disabled people have been invited to tell and record their own life stories, they have

proven capable of thinking abstractly and arranging their memories into detailed oral or

written narratives (Bogdan and Taylor 24; Roets, Goodley, and Van Hove 326). These

narratives can be termed “autobiographies,” which I define as accounts of events and

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feelings created solely by the person who has experienced or is experiencing them, or

“auto/biographies,” which are created by the self with the participation of another person.

Because I have participated in the creation of William’s life story in this paper, it is most

accurately described as “auto/biography.” 2

While many recent auto/biographical and/or autoethnographic texts by family

members—particularly mothers but increasingly fathers—are moving and reveal the

texture and daily events of life in a “disabled family,” the majority focus on the parent’s story of coping, healing, and making sense of the child’s condition rather than on the child’s narratives. 3 Healing through writing is a legitimate goal, particularly if the

condition is perceived or experienced as a disability rather than a way of being, and many

fine examples of such works exist. These include Beth Kephart’s A Slant of Sun, about a

mother’s struggles to accept her son’s autism and get him through a year of mainstreamed

kindergarten (e.g., 242-48); Jennifer Graf Groneberg’s Road Map to Holland, a tale of

how a mother comes to love her young son with Down syndrome (e.g., 229-41); and

Rupert Isaacson’s The Horse Boy, a chronicle of a father’s adventures and energetic

efforts to help his autistic son through horse riding and shamanism in Mongolia (e.g., 67-

81). Other comparable works are Martha Beck’s Expecting Adam and Kathryn Lynard

Soper’s The Year My Son and I Were Born, both about a mother’s spiritual and personal

journey to understand Down syndrome (e.g., Beck 281-324; Soper 289-323), and Susan

Zimmermann’s Keeping Katherine, in which a mother discovers that learning to love unconditionally is the only way she can come to terms with her daughter’s Rett syndrome

(e.g., 225-35).

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Of course, the life narratives I present in this paper do, inevitably, include my

views, reactions, and emotions, and an exploration of my own life as a researcher and

person—what anthropologist Gelya Frank calls a “biography in the shadow” (83). In fact,

I attempt to make evident my own personal participation and role in shaping the research

(Davies 83). One way in which I have done this is by writing in the present tense, which

clearly indicates the narratives are constructions, not simply expressions of a pre-existing

truth; before readers enter each narrative, they know that it has been written in the past

and that its apparent unfolding in the present, as they read, is an illusion.

I have also tried, however, to provide a greater focus on some of the absent

“insider stories” (Fudge Schormans 113) or counter-stories, serving as the interpreter who brings these stories to the dominant population (122). Thus I attempt to assist William as he tells his own stories.

I gathered the raw data for these counter-stories from spoken narratives during ten months of autoethnographic research, which involved keeping a research journal to record observations, mindful listening to the self and others, audio recording and transcribing snippets of William’s and other family members’ speech, and documenting my own emotional involvement as I lived through the months of research. I shaped the auto/biographical texts into the form in which they appear here: short creative nonfiction stories that include dialogue. 4 They may be read alone as the type of autoethnographic

stories that Carolyn Ellis writes, which are intended primarily to reach and create an

empathetic connection with a wide audience—to provide a shared human experience and

understanding of social issues rather than overt theoretical analysis or discussion (Chang

46; Ellis, “Introduction” 16; Reed-Danahay 412). While Ellis does not deny that analysis

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can at times enrich autoethnography, she explains that it can also be “an unnecessary

diversion from the emotional experience of the story” (Bochner and Ellis 30). In addition,

I hope that the stories

…displac[e] the notion of language as representation with language as a

mode of communication, using creative genres of writing that can help

mobilize social action or evoke participatory experiences through

imagination… and storytelling. (29-30)

In other words, readers are welcome to enter the stories and to respond to them on a

primarily emotional and visceral, rather than intellectual, level—to engage imaginatively

with the larger social issues they tackle.

However, I have also chosen to contextualize and encourage intellectual

engagement in the narratives by providing poststructurally informed analysis and

discussion—although these certainly are not purely poststructural because they centre on

individuals and their sense of being individuals, as well as on the social construction of

subjectivities or “selves” (Etherington 20). I have provided this contextualization to avoid

lapsing into solely creative autoethnographic writing in which “the theoretical

underpinnings… are implicit, vague or self-referential, leaving, at worst, a vacuum that

can be read as vacuous or as solipsistic” (Gannon 270). Nevertheless, like the autoethnographic researcher Kim Etherington, I struggle with the concept of a purely poststructural autoethnography; thus I take a bricoleur’s approach (Denzin and Lincoln 4;

Kincheloe 682) in attempting to reconcile a belief in the social construction of subjectivities or “selves” (Etherington 20) with a concern for individuals and their sense of being individuals.

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The first narrative demonstrates this construction of subjectivities, and emerged

from a conversation William and I had in spring 2009. After more than three months of

becoming engaged in the research (Bochner and Ellis 22)—of not simply recording and

observing William’s narratives, but reacting to them with amusement, pleasure, and

sometimes impatience, frustration, and sadness—I had begun to view, participate in

creating, analyze, and celebrate his life narratives in new and surprising ways. I saw them

not as fragmentary, unexpressive, and repetitive statements, but as imaginative

constructions of various versions of his life and self (Bruner, “Autobiography” 111). In

particular, the constant reflexivity of autoethnography (Etherington 11), which involved

the daily application of Husserlian phenomenological methods of “disciplined reflection,

or introspection, on experience” (Frank 86), permitted me to move toward a felt, or

embodied and intuitive, understanding of the ways in which society (or dominant discourses, if one prefers) shapes me and William, and other family members—and how we also resist these discourses.

This introductory narrative focuses on a familiar event: William’s daily telephone

call from school. The narrative is typical of William in that the conversation centres on

two often-expressed concerns: home and locating others in time and space. However, it

and the narratives that follow occurred at an atypical and liminal time in our family’s life:

during a friend’s disappearance and, later, presumed death. This loss runs as a thematic

thread through the narratives. My choice of theme was intentional, not only because it

was of particular concern to me, but to indicate my own participation in creating the

narratives and the way this event shaped William’s and my communication. I became

aware that I had not considered discussing certain issues, such as illness, accidents,

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sorrow, change, and death, with him. Nor had I thought about how he might perceive

these.

Home

—sometimes, it’s best to live

nowhere, and yet be anywhere at home.

(Arnold, “Hermit Crab” 8-9)

“You’re somewhere?”

William’s voice, reedy and high, makes him sound younger than his eleven years.

Disembodied, it drifts over the telephone from his special education classroom to my home office. It’s 11:30 a.m., right after his lunch. I try to focus on that voice, to lighten my thoughts and move them from the deeply troubling news I’ve just learned from several friends and a news report (Hanna): Craig, a family friend, a poet and professor in the local university English department, is missing on a small island in Japan where he went to research volcanoes for a new book. He’s been missing for three days already, and believed to be lost and probably injured in the heavily forested area around the volcano.

One more day, and the official search for him is scheduled to end. I have an image of him, tall, thin, stooped, stumbling through the twisting, convoluted trunks of sugi trees as the light drains from the sky and late afternoon turns into evening.

“Mummy?”

William’s voice has tightened and has risen a half-note. It sounds anxious, and, as always, its piping quality reminds me of the Lost Boys in Peter Pan (e.g., 71-73), those peripheral characters whose childish voices and stories are hidden by Peter’s. His story dominates, of course, because he’s the leader, the one in control.

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“Where are you, Mummy?”

Until William’s call, I had been within an imaginary world of volcanic paths

disappearing into humid underbrush that smelled of crushed leaves and nutty soil. Now I look out my office-cum-living room window and return to southeastern Wyoming. The

grass is still brown and stiff. Only the hawthorn bush in the front yard has a few tight,

yellow-green buds on its dark branches. I can see that each bud has three pointed

swellings, which later will become leaves. It’s already April 30. Spring comes so late on

the high plains of the Western United States.

“I’m at home. Where are you, William?”

He is silent for a moment.

“You don’t know where I am?” he says. “Maybe I’m nowhere but somewhere?”

“I know you’re at school. What have you been doing today?”

Another silence. A cough. A high-pitched humming. Then he starts blowing

raspberries into the phone, as if to drown out my question. They’re so loud and so

forceful, I have to pull the receiver away from my ear.

I hear a whisper in the background, urging him to tell me he went to music and

played a lollipop drum. It’s the voice of a paraprofessional in William’s special education

classroom, who helps him and the other children with developmental disabilities make

phone calls home. The goal is to teach them to hold a proper conversation.

“You’re sad, Mummy?” I’m surprised. I must sound more upset than I had

realized. Although my stomach aches and my upper arms are tense, I had tried to keep

my voice calm and soothing. “You tell me, Mummy? It’s a story?”

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Of course I’m not going to tell you, I think. How could I explain any of this to him? Does he even remember Craig clearly? He hasn’t seen him for a year.

No one has ever given me advice for talking to William about difficult subjects: illness, loss, death. In fact, all the recommendations from the developmental pediatrician, educators, therapists, and state case managers have been about ensuring a stable and predictable routine. This is supposed to keep his behaviour on an even keel so he can learn to “fit in with the community.”

“I can tell you a story at bedtime.”

“And I’ll tell you a story. I’m coming home over the phone. I’m with you. I’m with you, Mummy?”

As usual, our conversation has circled back to where I am.

“Where are you?”

“Where do you think I am?” I ask, sounding impatient even to myself. I want the conversation to be done. As always, it’s going nowhere.

The sound of his breathing fills the receiver.

“You’re not here. You’re at home?”

“Yes. I’m at home.”

Now the paraprofessional is telling him it’s time to say goodbye. This happens every day when he repeats the “home” question once too often. If he’s allowed to continue, the conversation becomes circular, words fall away, the circle tightens until he is back at the beginning, asking the two-word question “You’re somewhere?”

“Okay, Mrs. G. Okay. I have to say ’bye, Mummy. I’m supposed to say ’bye.

’Bye. Is that right, Mrs. G.?”

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I’m relieved but suddenly also oddly disappointed that we can’t continue the

dialogue to its end. I begin to say goodbye, too, but the line has already gone dead.

This narrative is what Susanne Gannon refers to as the non-linear story of life events that has no “definitive contours” but rather illustrates “the always in motion ‘lines of subjectification’” (269) that affect lives, and the potential for reinterpreting stories or experiencing them differently. Once, not so long ago, I would have seen the fragmented conversation, the circular and repetitive narrative that always returns to the question of where he and I are, and his silence in response to my questions as demonstrative of merely deficient thinking. It would have seemed proof, in the words of textbooks on developmental disability, of a life narrative that is not simply different but “delayed or disordered” (Ainsworth and Baker 3), of a person with a deficient self-concept (Harris

144) and language disorders and difficulties (Brown and Percy 386-89).

Now, after several months of autoethnographic research and writing personally and with emotion “to learn something that I didn’t know before I wrote it” (Richardson,

“Writing” 517), I view such conversations differently. I recognize the emergence of one of many “tentative, marginalized voices… alongside those of the dominant western discourses that value certainty, action and decisiveness” (Etherington 21). I see the paraprofessional’s and my own persistence in trying to force William to give the “right” answers, and my assumption that certain important information—the loss of a friend— should be withheld from him because he cannot understand it or react to it in an

“acceptable” way. At the same time, our fluid subjectivities are evident: my relief but disappointment at the end of the conversation, his acceptance of how he is supposed to

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obey the paraprofessional and yet his resistance to the normalizing “institutional gaze”

(or, more precisely, the institutional voice, in this case) in his refusal to answer questions

(Foucault 158; Fudge Schormans 117; Sturken and Cartwright 98-99).

His narrative thus represents both his acknowledgement of and simultaneous refusal to accept his placement within or “insertion into” a particular discourse (Weedon

94), in this instance a discourse of disability that requires him to follow scripted methods

of behaviour and interaction with others. Concurrently, the narrative demonstrates the

transformation of the meaning of experience that can occur if one brings “a different set

of assumptions to bear on it” (82). William’s speech (and silences, humming, and

raspberries), which clearly follows his interests and goals for the conversation, presents a

challenge to a powerful discourse of education because it represents a “reverse”

discourse; as Foucault explains, such a discourse is able to arise because the dominant

discourses are available to oppose (Weedon 106-08).

Recognizing a devalued discourse (e.g., that of a child with a developmental

disability) as a reverse discourse is a way to privilege it over a valued one (e.g., that of

professionals or others in authority). This table-turning is necessary if life narratives are

to be created by rather than for those with developmental disabilities. For example, in a

study of autobiographical writings by “T,” a boy diagnosed with autism, Ljiljana Vuletic

and Michel Ferrari analyze three of his self-narratives “on [their] own terms” (133).

Specifically, Vuletic and Ferrari do not assume that T’s preoccupation with transportation

and objects such as bus transfers, buses, planes, and cars proves the dominant “Theory of

Mind” deficit hypothesis that “people diagnosed with autism are severely deficient in

their ability to self-reflect, produce self-report, and understand themselves in general”

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(139); rather, they reverse the assumption, and point out that he ties this interest in

objects to himself and his “needs, feelings, specific experiences, and many other aspects

of self” (139). For instance, he says, “I am a person who knows and likes about (sic)

different kinds of transportation” (133, italics mine) and “I like drawing airplanes and

building models” (134, italics mine). T’s statements and other “autobiographical accounts

and case studies of people diagnosed with autism clearly show that these people are

capable of sophisticated self-knowledge” (139).

The second of William’s narratives, embedded in a text that provides a setting and

indicates my state of mind, was created as he sat at the computer looking at Google Earth

maps. Like T’s, William’s narrative demonstrates self-knowledge, which I define in

poststructural terms as the ways in which people understand and make sense of their lives

according to their subjective experiences—an important starting point for understanding

and challenging power relations in society (Weedon 8).

Himself

…why

did I laugh then when you had let me see

through the idea of you to you

(Arnold, “Asunder” 66-68)

The search for Craig extends for another week (Donaldson James), and I decide to

tell William about it. I’ve been putting it off because I fear he’ll keep asking “Where’s

Craig?” even after I’ve told him. However, he already senses that something is amiss, and he has been asking about Craig and where he is. It’s time to talk to him about it.

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His teachers, too, think he may be anxious because of the sadness he doesn’t

necessarily understand but senses in the household. They mentioned that in a note from school yesterday. The note explained that he’s been a little “grumpy” and

“uncooperative,” and that he seems tired when he does his daily jobs: delivering newspapers to classrooms and helping with minor cleanups around the school. The note also urges me to encourage him to talk about his jobs.

I know I’m considered a good parent who supports the school’s work with

William, and so I begin thinking of ways to make him more enthusiastic about these jobs.

As the thoughts swirl through my mind, mixed with fears about Craig, I feel my lips set

in a tight, straight line, as they always do when I’m resistant to an idea or when I am

pushed to do something I don’t want to. I decide I won’t talk to William about his jobs.

Somehow they seem trivial in light of Craig’s disappearance, and I’m also reluctant to become part of the group that expects William to do these jobs, and to do them cheerfully

at all times. Why should he have to enjoy them?

Perhaps to soften the slightly negative tone of the note, a photo was also included

in his backpack. It shows him with a huge newspaper bag slung over one shoulder. He’s

standing beside a large bucket and mop, looking down at his feet. For some reason he’s

wearing a grey sweatshirt and a pair of gold sweatpants instead of his own T-shirt and

jeans. Probably they got wet in the spring mud on the playground. I feel the usual pity

and tenderness at the way his clothes are bunched up and hang loosely from his body,

with its thin limbs and lack of muscle tone. His head is large and heavy-looking on his

delicate neck, the straight brown hair thick and shiny, the eyes dark in his pale face.

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When he arrives home from school, I tell William that Craig is lost on an island in

the ocean. William listens and flaps his hands for a moment. Then he replies, “Let’s go to

the computer and look at Google Earth.” He often asks to do this after school, generally

spending several minutes over various maps and satellite photos.

I wonder if he’s heard what I’ve said, and so I tell him again that Craig is lost on

an island a long way away, in Japan.

“I’m going to see him,” he says. “I can find things on Google Earth. Sometimes I

can.”

“I can show you the island where he went, honey, but you won’t see him.”

“I can be there. I want to look. Good job looking, William. Ha ha. Good job

looking, me.”

Once I’ve located the island of Kuchinoerabu on Google Earth (“Kuchinoerabu”), he eases himself slowly onto my office chair, careful not to make it swivel, and hums as his small hand moves the mouse. I turn away, unwilling to see again the dark, fissured slope that drops away from the volcano, the surrounding sea, the thick foliage that covers the island. I sit on the couch, turn on the digital voice recorder, and listen from a distance.

“There’s a boat, two boats. Sailboats. People move in them. You go up there.

That’s a volcano, Mummy? Yes, that’s a volcano. Hi, Craig.” He clicks to bring various areas of the island into closer focus: the caldera, the coast, the sheltered cove where the ferry dock and the island’s only inn are.

“Okay, I’m here. I see everything. Now I’m going to the Connor Hotel?

Mummy?” He swivels and gives me a sidelong look.

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I rise from the couch and type in the information for the old Connor Hotel in

Laramie, which is now an apartment building where Craig and his son lived for two

years. William zooms the cursor in on the fourth-floor southwest corner, but all we can

see is the black, irregularly shaped roof (“Laramie, WY”). I’m glad. I wouldn’t want to look at the apartment windows. Surely they must appear unnaturally opaque, as if they’re covered with frost to hide the empty interior.

William says, “We went for dinner there once. I watched the Happy Feet DVD.”

Then he clicks away from the image. “He’s not there. I’m going to the island again,

Mummy?”

Back he goes to Kuchinoerabu, manipulating the mouse to move the cursor over it, humming happily. Suddenly he says, “There I am,” and then, turning to me, adds, “and here I am. Maybe I am here or somewhere. You are here and somewhere? Jamesie and

Caroline and Daddy are somewhere?”

“Yes, we are,” I reply.

I glance at him and then reach over to the coffee table to grab the photo of him with the bucket and mop. I remember an occasion when I told Craig that William was developmentally disabled and added that he’d probably noticed some behavioural differences. Craig seemed surprised. Shrugging one shoulder, he said that, actually, he hadn’t—he’d just thought William was being himself. I smile at the memory.

Himself. Not simply some disabled kid being trained for a specific type of work, a specific kind of life. A varied self, who can be here and there, somewhere and nowhere.

Once again I look at the photo. I’m disturbed by the way it seems to hold William captive to a single idea of what he should be and do. I hide the photo among the books on

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the shelf beside the couch, and then I turn to watch the happy, animated William at my

computer keyboard.

“I can find things,” “I see everything,” “There I am… and here I am” are a few

phrases from William’s narrative that demonstrate a “discursive authority” (Sampson

77)—a strong and yet fluid sense of self and awareness of experience: William states that

he is someone who is both “there” and “here,” who can find and see “everything.” This

lived experience and the animated way in which he expresses it contrast with his passive

pose in the photo and the scripted narrative created for him at school, which is that of

someone expected to become familiar with and eventually fulfill a particular role suited

to his limited capabilities. His narrative is a kind of reverse discourse that opposes a

dominant one about what constitutes an appropriate life for him; it is therefore a

“reverse” autobiographical account, which is malleable, changing even as he creates it, and open-ended.

This reverse autobiography is appropriate for vulnerable and marginalized people like William: people with developmental disabilities or women, colonized peoples, and

the poor. Although increasingly the life stories for such people are self-narrated,

frequently the “official” narratives have been written for them— for example, by ethnographers who gathered narratives from aboriginal women and then wrote the

“authoritative” versions of these stories (Mullen Sands 39-41). Likewise, local governments in Britain once elicited from the working poor details about their lives, marginalizing and silencing huge groups of people because the accounts came not from

“an urge to tell the self” in producing one’s own subjectivity (Steedman 25) (or

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subjectivities); rather, they represented the co-opting, interpretation, and use of one’s self or selves by others.

William’s lively sense of engagement with the world, so evident in his words as he visits Google Earth, allows him to fulfill this urge to tell the self, or at least facets of it.

Thus he emerges from “the backwaters—or shadows—of history” (Linda Anderson 95) and the anonymity of the “official” life roles (e.g., manual worker) assigned to him. He even encourages me to recognize my own uneasily aligned subjectivities: the official

“parent” subject, who tells him how to express his “self,” and the resistant subject who rebels against the directive parental role.

In addition to displaying the quality of self-telling, many of William’s narratives reveal another characteristic: the co-creation of stories and less emphasis on producing a unified self (Olney 24) or on “individualism as the necessary precondition for autobiography” (Stanford Friedman 75). Using a feminist theoretical lens, Susan Stanford

Friedman explains that such individualism is “a reflection of privilege, one that excludes from the canons of autobiography those writers who have been denied by history the illusion of individualism” (75). Hertha Dawn Wong goes even farther, challenging

European notions of autobiography and calling for a more open definition that does not emphasize “the importance of the individual life and the necessity of writing” (6).

Although her subjects are Native Americans, Wong’s assertion is also apt for William.

Educators and therapists have told me that his practice of asking questions repeatedly, listening to the answers, and then providing his own answers indicates an inability to retain knowledge. The questioning and answering in both “Himself” and “Home” may indicate, rather, a way of involving another person in an open-ended dialogue. The next

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narrative demonstrates even more clearly that this asking and answering may be a way of

continually co-creating narratives and understanding.

Blossoms

I’m learning to pick what not to understand.

(Arnold, “Little Shrimp” 63)

I read of Craig’s presumed death on a Friday afternoon in May. The details are

posted on the Facebook page set up to provide updates on the search for him (“Find Craig

Arnold”). The news is no surprise, but it still comes like a blow to the stomach, leaving me breathless. Although it seems that nothing belonging to him—no walking stick or hat

or shoe—has been found, the expert trackers who spent days following his trail believe

he died after injuring his leg and falling from a high cliff.

“Your face has red spots, Mummy? It has red spots all over?” William asks when

he arrives home from school a little later. I take his hand to help him step from the squat

special services school bus that drops him off at the end of our driveway. As I help him

step carefully onto the sidewalk, I’m aware for the first time this spring that the birds

have come back. Their twittering and calling fill the warming air.

“Yes, I know, honey,” I say, keeping my head down as the yellow bus doors flap

shut and I wave to the driver.

He walks slowly for a few moments and is silent. Then he stops, and I feel his

fingers tighten around my palm. “You’re sad? You’re very sad? You’re crying? Yes,

you’re sad.”

“Yes, I’m very sad.”

“Something happened?”

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“Yes, something with our friend Craig.”

“R. the boy’s dad?” he asks. “Where is he? I can look at his picture on

Facebook?” He walks faster, pulling on my hand.

“Sure.”

When we enter the living room, my computer screen still displays the “Find Craig

Arnold” Facebook page. His photo is in the top left-hand corner of the page: his long, narrow face and wide smile, his shaved head. In the background are a dark cottage and a window, a frond of thick tropical leaves.

William says nothing, and although he stares at the picture he seems reluctant to sit at the computer. He jerks his shoulders up and turns from the office chair, then twists

his hands, palms up, fingers splayed, through his hair. Weaving his head from side to

side, he moves to the window, drops to the floor, and starts bouncing on his knees.

I leave him alone for a few minutes. Eventually he speaks. “I pat you, Mummy? I

pat you,” he says, bending forward slightly to encourage me to pat his back with a firm

motion. I kneel beside him and begin patting, sniffling and trying to focus on the leaves

unfurling on the cottonwoods, the fluffy white blossoms on the hawthorn bush just

outside the window. The pats make a faint and rhythmic slapping sound. Idly, I wonder

for the umpteenth time why he says, “I pat you, Mummy,” when he wants me to pat him,

and why he usually says, “You pat me, Mummy,” when he pats my back. Maybe the

wording indicates that the patting is shared, and that who pats and who is patted doesn’t

really matter….

“Where is Craig?” William asks after a while.

Harkin 21

For the second time in a few weeks, I’m wondering how to speak to William

about loss and death, if he can possibly understand these concepts that I find difficult to

grasp. I bought some books on helping those with developmental disabilities understand

and cope with loss, and studied them before he came home. The first mentioned that

“[a]utonomy frustrations may contribute to an underlying grief in which there is

vulnerability to narcissistic injury” (Kauffman 5). I closed the book quickly and put it

aside. Another stated that a developmentally disabled person may lack skills or

knowledge to cope with loss effectively (Luchterhand and Murphy 25), and detailed more than a hundred ways to help such a person deal with loss (43-98). One of these was blowing bubbles and demonstrating how they burst (49-50). Another author suggested releasing balloons to say goodbye (Van Dyke 19), while yet another recommended facilitating grief work by telling a story (Markell 5-9). All advised using concrete examples to aid understanding. Maybe I can try one or more of these methods. I can start right now with a story.

“Well, we don’t know exactly where he is. Something very sad happened to him,”

I start, slowing the patting movements.

“Something sad? I know. Pats, Mummy? Pats.” He grabs my hand and indicates

I’m to keep patting more vigorously. I’m certain he’s not going to understand anything I say. The idea of telling a story seems hopeless.

William looks up at me and then away from me. “He’s in the woods?” His back stiffens. “He is in the woods!”

In a way, I think, yes, in a way.

“Yes,” I say.

Harkin 22

“Yes. You’re saying yes? What?”

“Yes, he’s in the woods.” Again the room is silent, except for the light tapping of

my pats and William’s one-note humming. He stares out the window.

“There’s someone out there?” he asks suddenly, and points at the hawthorn out

front.

“No, honey, there’s no one.”

William keeps pointing, stubbornly, I think.

“Yes. R. the boy’s dad can be there? He was there.”

William is right. One spring day two years ago, Craig, his son, William, James,

Michael, and I stood by that bush talking, as an early May breeze scattered hawthorn petals around us. Craig’s black-leather motorcycle jacket contrasted sharply with the pale blossoms. The sky was a robin’s egg blue.

“Yes, I guess he can be there.”

“You pat me, Mummy?” William says, his mouth turning down at the corners. He begins slapping my back, a little harder than I find comfortable until he remembers I like

a gentler pat. “We do pats.”

I am humbled by his ability to acknowledge and remember our friend, and to provide and receive comfort. I sense this ability to understand and accept loss may be

greater than mine, and so I stop trying to hold back tears. We kneel by the front window,

patting each other’s back, he humming and I sniffling. The giant clouds of blossoms on

the hawthorn bush tremble, revealing glimpses of the delicate grey branches beneath. The

snowy petals will be perfect for only a few days, and then they will begin to drift and fall.

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As I reread this narrative, I am reminded of Anne Ruggles Gere’s belief that life stories can be “shared” and co-created by a “disabled” person and one who is considered

“normal.” This results in common and “antiphonal forms of voice to construct a narrative that preserves complexity and resists easy consumption by offering the multiple truths of our shared lives” (31), and a complex intertwining and interdependence of life stories

(Frank 107) and our selves (Chang 24).

Gere created such stories with her adopted daughter, who had mild fetal alcohol syndrome. They worked together closely to co-write narratives, the aim being to produce a work with a blended and cooperative voice (30-31). Although the “Blossoms” narrative was not consciously co-created in the way that Gere and her daughter’s narratives were, but rather written using a conversation transcript, it does display blended and

“antiphonal” voices (31), a sort of chorus, with William asking and answering his own questions and also including me in the narrative by questioning me. We use echolalic language to construct a shared experience, a “collaboratively developed” text (Gannon

26) and a connectedness within our relationship and our environment (Smith 148), which would not exist if either speaker’s words were omitted. Admittedly, the “I” does not disappear in the way Gannon suggests it might in some collective texts (95); our embodied, or at least physical, experiences remain distinct, as I have tried to indicate in descriptions of our physical reactions (e.g., bouncing, humming, sniffling). Yet the shared discovery and acknowledgement that although “something sad” has happened, perhaps Craig “can be there” not only in his Facebook photo, but in some less tangible, imagined way, means that William and I also come to share a story of our emotional reactions to the news—at least for a few moments.

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We have what Paul John Eakin terms a “relational life” in this autobiographical interlude, an identity developed “with others, often family members” (57). We create the narrative together and ultimately neither voice dominates. This shifts the expected relations of power in the conversation; far from being the object of others’ knowledge and power or the unknowing subject who must be guided into knowing (e.g., through the use of recommended techniques to help him understand death) (Fudge Schormans 117),

William uses language and encourages me to use it to co-construct a tentative understanding of what has happened. The result is something like the one the narrative researchers Michael Connelly and Jean Clandinin describe:

…[T]he stories of our participants merged with our own to create new

stories, ones that we have labelled collaborative stories. The thing finally

written on paper (or, perhaps on film, tape, or canvas), the research paper

or book, is a collaborative document; a mutually constructed story created

out of the lives of both researcher and participant. (12)

Neither William nor I “own” the narrative (Gannon 25), but both of us participate in and react to it. Briefly, our shared participation allows us to escape or at least loosen the bonds of our usual roles, which involve my controlling and guiding the way in which he reacts to events, and his acceptance (mostly) of this control.

Not all the narratives that William co-constructs emerge as naturally as this one seemed to, although this “naturalness” may have had a lot to do with my own emotions and control over the writing, which flowed more easily with this narrative than with the others in this paper. Frequently, the most noticeable elements in narratives co-created by

William and other family members are “poststructural themes such as desire and the

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instability of identity” (Gannon 311), our various struggling and contradictory

subjectivities. We circle around certain events (e.g., William’s role in and effect on the

family), retelling and reinterpreting them according to each person’s always-changing

“lived experience” (Gannon 283).

Nests

What what would’ve given the story a happier ending

(Arnold, “Hymn to Persephone” 106)

The robins’ abandoned nest rests on the porch light beside the back door. It’s slightly lopsided and has disintegrated enough to expose its construction of coiled string

and ribbon, twigs, torn-up candy wrappers, and dried grass spackled with mud. Bits of

shredded corrugated cardboard hang from it, and a long pink twirl of sewing thread

waves to and fro.

My eighteen-year-old daughter, Caroline, and I stand in the yard and examine the

nest for a few moments. “All that wasted effort,” I say to her, as we step back into the

kitchen. “William keeps asking about ‘robin the bird’ and the eggs.” I remember the

flitting, diving shadows of the parent robins as they took turns defending the nest against

cats, our lively Boston terrier, and squirrels invading the garden. For at least three weeks

in June, they laboured to protect their cluster of eggs. And then one morning they were

gone, leaving the unhatched eggs behind.

“Yeah,” she agrees. “Some things are really sad.” She shivers, although it’s a hot

afternoon in August.

“At least when our guests come, there’s no danger they’ll be dive-bombed by the

robins,” I say. The University of Wyoming memorial celebration for Craig has been

Harkin 26

arranged for early September, and his son’s mother, S., and possibly his son, R., will be coming from Seattle to stay with us for a week. “The robins might have had a second family if this nest had worked out the first time. S. and R. wouldn’t have been able to go outside.”

“Right.” Caroline plops into a chair at the kitchen table, where my husband,

Michael, and our fourteen-year-old son, James, are already sitting. The table is cluttered with magazines, empty junk mail envelopes, sunglasses, insect repellant, glasses half filled with lemonade, and announcements from William’s summer school teachers.

Caroline picks up a copy of Vegetarian Times, flipping through the pages without reading them. “You know, Mom, I want R. and his mom to stay with us, but I kind of don’t think they should.”

“Oh. Why?” I ask. She has been looking forward to seeing R. again and to meeting S. William has been asking her constantly about them: How long will they be staying, and will it be nice having them here? Each time, Caroline answers enthusiastically that they’ll be here for seven days and that they’ll be glad to see us.

“Oh. Hmm. William might, like, say something weird—you know, keep talking about death or something.”

She slaps the Vegetarian Times magazine down and picks up her September issue of Psychology Today. “It’s, like, I know maybe we’re all thinking about it and feeling sad. Maybe he’s just saying what we’re thinking.” She stares at her fingernails. “But it still bugs me.”

“Why?” I ask again.

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“I don’t know. I guess it’s embarrassing. Usually I don’t think about it, but when he’s like that you just know he’s different—especially when other people are around.”

“Yeah, he could do that—say something,” says Michael. He’s been home from work for only a few minutes and hasn’t changed from his dark polo shirt and khakis into a T-shirt and running shorts. “Having people staying here isn’t ideal, especially considering what a mess the house is, but….” He looks around and slumps in his chair.

He seems tired this afternoon. Abruptly he changes the subject. “William’s perceptive in some ways. He might not say anything. It might be fine.”

James looks up from his laptop computer, flicks his long hair out of his eyes, and pulls an earbud from his left ear. In his new and unfamiliar deeper voice, he comments,

“Yeah, he’s smart in some ways. He does know stuff, but…. ”

“Yes, well, William knew Craig, too,” I reply, sitting at the table and sorting some old receipts into a throw-out pile. I’m not sure what point I want to make. I believe he’s the only family member unafraid to express the bewildered sadness we all are experiencing over Craig’s disappearance, and yet I’m uneasily aware that I’ve had some doubts about William’s behaviour when the houseguests arrive. Still, I feel I have to defend him. “I’ve told S. about William, and she’s okay with it.”

“But she doesn’t really know him,” says Caroline.

“Mmm,” says Michael. “Well, if S. knows…. She is a trained pastor, right? She’ll understand the way he is. He might not know what’s going on or even say anything, anyway.” He repeats, “It might be fine,” keeping his eyes on the kitchen TV, which is tuned to a channel showing a Colorado Rockies baseball game.

William wanders into the kitchen. “You’re talking?” he says.

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“Yes, honey,” I reply.

“About R. the boy and Craig? About me? What’s the matter?” He hums, in a way

that strikes me as being louder and more discordant than usual.

Caroline raises her eyebrows. Her blue eyes become very round. “See? William

hears everything and then he talks about it. That’s what I mean.” Her cell phone beeps

twice, loudly. She picks it up and begins texting. “I love him,” she says, her voice barely

above a whisper, “but I wish he could just be normal sometimes.”

William sidles up to her and begins blowing raspberries. Perhaps he’s understood

her criticism and is objecting to it. “Hey, honey, shh,” she says. Still texting, she turns to

hug him, applying the steady pressure he likes.

“Shh, William. If you’re going to make noises like that, then go somewhere else,”

says Michael. I’m glad he’s the one to tell William to be quiet, although I’d like William to stop making apparently meaningless noises, too.

“No,” William replies, and then adds immediately, “Sorry, Daddy. Sorry! Hey, sorry!”

“Okay. That’s okay, William.”

James adds his two cents’ worth to the conversation. “Yup, he can be really annoying. He says things on purpose and keeps saying them. Like yesterday,” he mutters.

Probably he’s remembering his argument with William over which TV show to watch. I heard the whispered “You’re a jerk, William,” followed by William’s louder

“No, you’re a jerk, Jamesie. You’re a jerk. Yes, you’re a jerk, baby. Jerk. Jerk. Jerk. Jerk baby.”

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“Craig’s not here anymore?” William pulls away from Caroline and wanders over to me, poking my shoulder sharply. It’s irritating and slightly painful. Silently I agree with Caroline: I wish he could just be normal. I wish there were a cure for the chromosomal glitch that has caused him to be, well, whatever it is he is.

“No,” I reply.

“Yeah, Mom’s right,” James says, patting William’s shoulder vigorously. He pops his earbud in again and focuses on his computer screen.

“What? What?” William asks. “What’s right?”

“Nothing, William,” Caroline says. She frowns and keeps texting.

“It’s nothing. No or yes? Jamesie?”

“Yeah, nothing, Buddy,” James says. “And don’t call me Jamesie, okay?”

“Okay, James…” There’s a pause, and then, “Jamesie…, baby.”

Neither James nor Caroline looks at William.

“I want juice, please, Mummy,” says William. “Where’d Craig go? Can we look at robin the bird in the nest? Where did the baby birds go?”

“Never mind. They’re just gone,” says Caroline.

“Where? I want them.”

“Never mind,” I say. “We don’t know. Just be quiet.”

The room is dim because of the overgrown pine tree and aspens outside the kitchen window. A breeze enters through the screen, and the aspen leaves flicker and rustle; the light dapples and brightens momentarily. As I watch the freckles of sunlight on my hands and bare arms, I have doubts that I’ll be able to control what William says and does when the houseguests arrive. I think of possible behaviour-management strategies,

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like ignoring the behaviour and redirecting him “to task” by “using a simple monotone

cue” (Brown and Percy 370). I have no confidence that any of us would be able to

implement these strategies—especially the first—with William.

“I want juice, Mummy,” says William, more loudly than before.

I push myself away from the table and go to the fridge to fetch the plastic jug of

orange juice, and then take a spouted cup down from the cupboard. I should make him

drink from a regular cup, but I’m tired of cleaning up juice and milk spills.

Sometimes I wonder if things will ever get easier around here, why everything

takes so much effort, if William really knows much about himself or the world around

him. I tell myself that we really do have a sort of poststructural existence, always

changing, never predictable, but I fear it’s simply unstructured. Not just the house is a

mess. Some predictability, some order, might end my other children’s uneasiness about

their conflicting feelings of love and frustration for their brother. 5 A nicely organized narrative with a happy ending—meaning, I suppose, a family with three normal children who communicate in predictable ways—would make life so much easier and less tiring.

My hands are cool from holding the chilled juice carton, and I raise them to my

face, which is suddenly hot. I’m ashamed of myself. I think of Craig’s sudden

disappearance, the pain his family is experiencing, the impossibility of making that

situation into a neat and happy narrative. I also feel like an impostor as I think of my

autoethnographic project about William’s narratives. I thought I had been celebrating his alternative ways of telling stories about his life, that they were meaningful and that I was happily participating in them. Now I wonder if I understand them at all, or if there’s even anything there to understand.

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The breeze drops and the aspens grow still. The light in the kitchen dims once more.

“What happened?” William asks again. “What’s happening?”

There is no simple or single answer to William’s question about what has happened, or about what is happening in this shared family narrative or what it means.

Although it follows some narrative conventions, such as a primarily linear structure and movement through time to a (tentative) ending (Ochs and Capps 18), it is not what Elinor

Ochs and Lisa Capps refer to as the “default narrative of personal experience” (20). This default narrative is characterized in part by a “certain, constant moral stance” (20), and

“Nests” has an “uncertain, fluid moral stance” (23) and is “[f]ull of hesitations, queries, and consideration of alternative perspectives” (23). Michael, Caroline, James, and I acknowledge the validity of William’s narratives, identify that he is “perceptive” and

“knowing” about loss and feelings, but we also fear these narratives and how others may view them, him, and us. A subversive discourse indicative of a particular family understanding of disability, or even a “disability culture” created through stories and language (Charlton 79), coexists with a dominant discourse about developmentally disabled people as unknowing, defective (Bogdan and Taylor 5), and separate from the rest of humanity (13). Even as we recognize the validity of William’s narratives and actions, Michael, Caroline, James, and I are strongly influenced by this dominant discourse and participate in it by ignoring his comments, criticizing them, or attempting to silence them.

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Meanwhile, William is both compliant with and rebellious against the behavioural

controls other family members’ language shapes for him, for example, by telling him to

be quiet, to stop questioning. With all of us, our own competing subjectivities push and

pull the narrative. We are

…embodied individuals living and acting with others within social

apparatuses – [within] those discourses which are deeply sedimented, that

are historical, from which we are already pulling away but which continue

to pull at us…. [D]iscourse is never static…. [D]iscourses are as much

constituted and constitutive of the others with whom we interact in social

space as of ourselves, and… subjectivities are fluid and contingent.

(Gannon 269)

This view of autoethnographic and/or auto/biographical work as unfixed, fluid, and always constituted by language is demonstrated in some but not most other auto/biographical works on those with developmental disabilities and their families.

Notable examples are Ian Brown’s The Boy in the Moon, in which the author does not

resolve his own conflicted feelings but rather sees “what is human, and lovely and flawed

at once” in his disabled son’s face (284), Sam Crane’s Aidan’s Way, in which he

concludes that “maybe it would be best to not even try to understand, in some formal

rational way, but just see” (271), and Jane Bernstein’s Loving Rachel, a memoir in which

she describes life with her developmentally disabled daughter. While the last sentence in

Loving Rachel is upbeat and hints at a resolution—“I have grown to love you so deeply that I can truly say that I can no longer imagine my life without you” (279)—the preceding pages are full of contradictory statements: Rachel “followed directions” but

Harkin 33

“could not recall for me anything that she had done that afternoon” (275); she has a

“pure, sweet spirit” but “she will never be valued by the world” (278); Bernstein loves her because “she is warm, charming, and responsive” but would give her “a magic pill that would rid her of all deficits” (278).

The texts by Brown, Crane, and Bernstein and the brief “Nests” narrative about my own family are exceptions to what Stuart Murray calls “overcoming” narratives (15).

Murray believes the triumph theme is common in narratives concerned with portrayals of developmental disabilities such as autism, although, again, they are not evident in all portrayals: Roy Grinker’s Unstrange Minds details his fears and expectations for his daughter with autism, and also provides an examination of both negative and positive cultural attitudes (e.g., 251-301). Nonetheless, Murray points to several instances of the

“grand narrative” of family life with autism. These occur in books, newspapers, documentaries, and films and involve inspirational family members, especially “an autism ‘super mother’” who “commands admiration and respect” (184) because her boundless energy and strength represent “a love that can counter the destruction that autism brings” (177). In the meantime, the autistic child himself or herself is oddly disembodied and peripheral to the family story because “the audience connects [with] the traumatized, or inspired, parent who is the dominant presence, the mother whose emotions triumph over adversity” (200). In other words, the discourse of disability as a deficit remains, and others do not have to rethink their assumptions about people with developmental disabilities or consider that they may have their own stories to tell.

While I am not claiming that “Nests” or the narratives by and about William that precede it represent the “truth” about him or provide guidelines on the correct way to

Harkin 34

view people with developmental disabilities and their families, the stories are an attempt

to reveal my own “unknowingness” about my conceptualization of what William’s diagnosed disability means. They also are an attempt to show that the disability is constructed socially—specifically through language. In “Nests,” the same observed

behaviour in William fluctuates between being defined as “perceptive” or “weird” and

“smart” or “unknowing,” depending on how other family members view it, experience it,

and describe it.

In their own much larger ethnographic study of life stories in adults with

developmental disabilities, Robert Bogdan and Steven J. Taylor elaborate upon this

process of social construction. They point out that in the developmentally disabled, “the

“[l]abeling and testing provide a cloak of scientific legitimacy to social control and

oppression” (15). In an attempt to remove this cloak of legitimacy, they provide almost- verbatim transcripts of life stories dictated by Ed Murphy and Pattie Burt, two adults with developmental disabilities (31-202); Bogdan and Taylor’s participation is confined to editing the transcripts and providing an introduction and a conclusion. The goal of making these freestanding life stories available is to offer an opportunity

…to distance ourselves from our prejudices (Becker, 1966). This distance

allows us to empathize with the person – to see the world from his or her

point of view. By freeing ourselves from our own preconceived notions,

we are forced to examine common assumptions about the kind of people

who are sharing their lives with us. (17)

The implication is that these transcribed stories not only provide ways to wriggle free of preconceptions but suggest alternative possibilities for the lives of those with

Harkin 35

developmental disabilities. They may even offer a means to “celebrate the participant’s

ownership of their own writing” (Sampson 66), which I have attempted to do for William

with the “Home,” “Himself,” “Blossoms,” and “Nests” stories; however, in each I have embedded William’s narratives within the larger frame of my own, following Carolyn

Ellis’s style of first-person ethnographic writing “as a form of creative nonfiction”

(Bochner and Ellis 28) involving “emotionality” (Ellis, “Introduction” 15) and “concrete action,… embodiment, self-consciousness, and introspection portrayed in dialogue, scenes, characterization, and plot” (Ellis, Preface xix). In the fifth and final narrative, I try to emulate Bogdan and Taylor’s approach; I provide a transcript of William’s brief but vivid spoken narrative and my own separate, although much longer, introduction and

a concluding analysis. 6

Sparrows

Sparrow who cocks her head to one side as if doubtful

Sparrow who follows every flick of your hands moving

(Arnold, “A Ubiquity of Sparrows” 3-4)

Craig’s memorial celebration at the art museum is over. William showed little

interest in it, except to say as we drove there, “We’re waiting for Craig?” He said he

didn’t like the crowds or the rows of black-plastic chairs, and he scrunched down to

make himself as small as possible in his own chair. He announced many times that he

wanted to leave. He rubbed his hands through his hair, rocked slightly, and did the

almost-silent humming that he’s perfected in public and which prevents most people from

staring at him. He stopped only during the reading of a few lines from one of Craig’s new

poems, “A Ubiquity of Sparrows” (Arnold, “Ubiquity” 145-46; Matray; “Toast”).

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William seems to like poetry, and even remembers a line or two occasionally; possibly

the rhythms are soothing. Once the reading was over, he began rocking again and asking

when we were going home.

Perhaps it’s true, after all, that William simply doesn’t grasp the concept of

death and loss or mourning. He likes listening to Craig’s voice in poetry webcasts

(“Craig Arnold”; “In Memory”), but he doesn’t express sadness in a way I understand.

Perhaps he can’t comprehend what happens outside his body and the circumscribed area around it that includes the people he knows. Maybe it’s time to search again for those

books on explaining death to the developmentally disabled. Or maybe that’s a lost cause,

and he simply needs to get back to a familiar routine. A new school year has started, and

he comes home upset. He struggles to keep his balance as he runs from the bus, backpack flapping as he yells, “No. Get away from me! Leave me alone!” His face is a mask of

terror: the dark hazel eyes wide under the delicate sweep of eyebrows, his mouth slightly

open with the corners turned as far down as they will go. The terrified expression is a

familiar part of the first week back at school every year: there are new faces, strange

classrooms, tables rearranged in the cafeteria, P.E. and music and art at different times

of the day. With William, feelings like anxiety are never simply experienced in the mind,

but embodied: “full out to the skin,” as Craig once wrote (Arnold, “A Place of First

Permission” 99)….

I am thinking all this two days after our houseguests have departed, puzzling over

my very different reactions to William’s “full out” behaviour at the memorial service and

with our houseguests. The visit went well. William smiled whenever he saw R. and took to

S. immediately. He even asked her to take him for a ride in her rented Chevy Cobalt and

Harkin 37

said I didn’t have to come along. When they returned from a long drive around town, he took her hand as they walked up the driveway. All the while he chattered about the car logos they had seen during their ride together. She nodded, and the smile on her lovely, gentle face matched his. “In the moment—they’re fully alive in the moment,” I thought, reflecting that her silence may have been what made him comfortable; she wasn’t telling him what to do or how to behave but had simply entered his world and let him talk.

Later that day, no one seemed to find William’s questions about Craig’s disappearance and death awkward or embarrassing. Perhaps everyone’s emotions were so close to the surface that William’s way of being “in the moment” seemed appropriate.

And perhaps it’s unfair always to expect William to try to alter his reactions and ways of expressing himself depending on the rules for a particular social situation.

Now that the guests are gone, he says repeatedly that he misses S., and I don’t really mind the repetition. I miss her and R., too. After being full of tears and talk and laughter for a week, the house is quiet, much too quiet. William and I are alone, and I grab the digital voice recorder—hoping he’ll be verbal about a greater variety of topics than he has been during the past week—and ask him to come with me into the backyard for a few minutes. We can soak up the early September sun, see how some of the chokecherry leaves are already turning, flashing bright yellow amid the dark green.

I drag a pair of dilapidated lawn chairs from the patio to the grass, scattering several hopping, complaining sparrows. They leap lightly onto the lower branches of the chokecherry to enjoy its fattening berries.

William and I sit side by side on our chairs. The minutes pass. As he hums and twists his fingers through his hair, the chokecherry slowly fills with intensified sound and

Harkin 38

darting feathers. Cheeping and twittering, calling and trilling, dozens of birds—lime- green finches, mountain bluebirds, chickadees, sparrows, and even a robin or two— plunge into the chokecherry to join those already there, making the branches quiver and sway. William’s face becomes a mask of joy: eyebrows lifted, mouth open so that I can see his upper front teeth, large and new enough that they are still serrated along the lower edges. His hands drop from his hair and flutter at his sides as he listens and watches and speaks:

Robins and birds are

Moving, moving.

My hands are moving.

Birds are upside down.

Their heads are moving….

It’s like sparrows?...

Yellow birds, blue ones, brown ones.

Lots of brown ones there.

Their heads are brown or yellow….

The tree is loud. Come here, Mummy.

Look. Hear all the birds.

Shh. Hear them yelling.

You can hear them?

I can hear them.

They’re moving.

They’re there, and they’re moving.

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I’m here and I’m listening.

Look! You see them?...

Hear them.

Yes, I hear them, William.

For me, this final narrative is the most revelatory and personally moving.

Although I am a reflective participant in it, I am silent before and as William speaks. My

observation of him with S. revealed that simply letting go of my need to guide him, to

prompt him to speak, might free him to express himself as he wished. What emerges as a

result are poetic fragments of speech that bring to mind the kind of autobiographic

account Virginia Woolf meant when she imagined writing a “queer amalgamation of

dream and reality, that perpetual marriage of granite and shadow” (qtd. in Linda

Anderson 97): a combination of “real” experience and what is felt and created through

the spoken or written word. Donna Williams does something similar in Nobody Nowhere:

The Extraordinary Autobiography of an Autistic, when she describes the pleasure of

losing herself in her own world, “through color, sound, pattern, and rhythm” (206). It is

writing that is, in Paul Ricoeur’s words, attentive to “…the incompleteness of

personality, the diversity of the levels of the conscious, the subconscious, and the

unconscious, the stirring of unformulated desires, the inchoative and evanescent character

of feelings” (10). It is movingly “real” and yet with an elusive (and illusive) meaning.

A comparable published example of expressed dream and reality is a poem by a

young woman named Teresa, which she wrote during a workshop for women with developmental disabilities:

Harkin 40

The Sky

Blue.

Feels heavy.

If you put your hand up in the sky and stirred

it would be like water.

If you ate it, it would be

solid…. (Sampson 71)

Teresa’s image of stirring the sky “like water” is striking and something that she had

evidently imagined while gazing at the sky and its saturated, almost palpable colour.

While they are fragmentary, the lines of poetry suggest more about a lived (or felt)

experience than a cohesive record of achievement or activities would. 7

Spoken poems/narratives like Teresa’s and William’s may seem remarkable—

they do to me—because often those with developmental disabilities are discouraged from

observing the world and expressing their experience of it; instead, they are encouraged to

“fit in” and follow the stories prepared for them by others. Jonathan Mooney writes of a

teenaged boy’s experience of “the shrinks, the school, [his] parents,” who tried to “fix

[him] all the time” (4). For a time, I, too, tried to “fix” William. I used picture stories to

demonstrate what he should be doing at various points during the day: eating breakfast,

getting dressed, walking down the driveway to the school bus, saying goodbye to me…. I

praised him when he followed the prearranged steps correctly, without comment or

complaint.

Harkin 41

Conversely, in “Sparrows” William creates and lives his experience through

language. Hélène Cixous describes this process as “unraveling”:

[Clarice Lispector’s] book [about Virginia Woolf as a girl]

unravels inside a character’s body. Of course it is inside and outside but

everything that happens outside, all the small events of outside life, are

immediately caught and turned into feelings and relations to the body. (70-

71)

This “unraveling” and the fluctuation between and interweaving of “inside and outside”

are evident from William’s opening words: there is movement, his hands are moving, the birds are upside down. His words unfold simultaneously with the events, creating the experience as he lives it and gathering me into it so that I can feel it and hear it and my body can react to it, too. This may be one reason I broke the narrative into lines of poetry, because I felt his “embodied speech” (Richardson, Fields 143, italics mine)—the pauses and breaks and rushing words—along with tears in my eyes and an ache in my chest, which I feel again whenever I read William’s poem/narrative. “The light, diffused character of pain or of pleasure” (Barthes, Roland 60) permits us to approach as nearly as possible what is real and, if the experience is a shared one, what is real to and felt by the

“other.” Gannon explains that in “relational social spaces our bodies brush up against other bodies in varieties of ways and a sort of osmosis happens between us” (339).

Further,

[i]t is within spaces contaminated by others that the poststructuralist

subject comes into being…. In writing, that other who is always entailed

in the text as a permanent possibility to the reader, and an “epistemology

Harkin 42

of emotion” (Denzin, 1997) aims to move the reader to feel the feelings

and imagine the other in that (con)text…. (339)

The significance of this shared embodied experience “within spaces contaminated by

others” is the possibility that we will become more open to other existence(s), the

complexity of the “other,” and our own “otherness” (Kristeva 191-92), so that our

relationships and our way of telling about these relationships may shift and become less

fixed; we open the door that divides the self and other (Fine 72).

I am not suggesting that this openness leads to a unity of thought or a fixed meaning for any narrative or experience. Experiences can be shared, but we all come to have “different truths, different versions of [our] collective past” (Hunt 111) and even our own. I hear a suggestion of the opening lines from Craig Arnold’s “A Ubiquity of

Sparrows” in William’s narrative (e.g., “It’s like sparrows?”), which may be another reason that I broke it into lines of poetry. However, I do not know whether he was remembering the poem or thinking of our friend; the poem/narrative remains mysterious, open to multiple interpretations, and its beauty is in the flow and twists of William’s words. I therefore will leave these words to stand as they are, with no more interruption or intrusion from mine.

Throughout my autoethnographic research, I have striven to be what Ruth Behar calls a “vulnerable observer” (1)—to “know others by knowing” myself (or at least some temporary and fleeting experience of myself) and myself by knowing others (33). 8 I have

thus tried to avoid becoming a “colonizing” writer who controls the meaning of the text

and for whom “the only principles that matter” are my own (Ashcroft, Griffiths, and

Tiffin 98), but as the participant–researcher, I know I have imposed my own

Harkin 43

“assumptions, understandings, or ambitions upon the emerging stories” (Fudge

Schormans 124). I have done this by analyzing them and also by shaping them in a

particular way; for instance, I have used familiar conventions of creative nonfiction, such

as scene, characterization, imagery, dialogue, and even rudimentary plots. This imposition of my own assumptions is, of course, unavoidable: Gelya Frank stresses that writing the narratives of someone else’s life inevitably includes “objectification and appropriation” of that person’s experiences (109). Frank admits this in describing her own experience of writing about Diane DeVries, a woman born without arms or legs:

No matter how well I might write about Diane’s lived experiences, my

voice could only be an after-trace: illuminating but not generative,

necessarily limited and a little hollow. It is Diane alone who has the

authority, like any autobiographical subject, to inflect endless meanings by

what she decides to include and exclude from her story, and how she

chooses to say those things. (116-17)

Frank’s statement is a poignant reminder of the challenges involved in presenting and preserving life stories to privilege the person with a disability rather than the person recording them. I attempted to do this by reminding William of narratives he had told me and events in his life, and asking which he would like other people to read. He indicated that he remembered and wanted to talk about certain stories again, and I selected five of these for inclusion here. Nevertheless, whatever autobiographical account I have created with, for, and about William is limited and incomplete, despite my inclusion of his own words and my attempt to share power with him in the creation of the stories.

Harkin 44

The very structure of this paper demonstrates that I am fallible as a participant in

this auto/biography, and that I, like William, am not a discrete self with one set of tidy

truths. The mother’s voice in the narratives contrasts with the researcher’s more

analytical voice in the discussion sections. Similarly, the content of the five

autoethnographic narratives also suggests the untidiness and complexity of “truths.” In

addition to William’s and family members’ words, other concerns and stories emerge,

primarily the story concerning the loss of our family friend. Various other textual elements (e.g., lines from Craig’s poems) are spun into the narratives, too. As Heewon

Chang tells us, “culture is a web of self and others” (65), not a neat single strand. Further,

I am uneasily aware that although I strive throughout the narratives to recognize ways in which William and I, and, to some degree, other family members are shaped by and resist societal expectations, the struggle to make sense of our life experiences is ongoing.

William’s phone calls from school continue, and sometimes I still find myself posing the questions I believe his teachers expect me to ask, while he still answers with silence or other questions. Family conversations about and with William involve frustration over his sometimes cryptic or blunt statements, but also wonder at his perceptiveness. He is both submissive to others and yet sure of his own interests, such as computers, maps, cars, and birds.

. I hope that, one day, William will decide to create his own autobiographical account, as Temple Grandin does about her experience of autism in Emergence (Grandin and Scariano, e.g., 90-119) and Thinking in Pictures (Grandin, e.g., 84-100), or perhaps he will participate in a more complete autoethnography that includes interviews, like Jane

Bernstein’s book about her adult daughter with visual and developmental disabilities

Harkin 45

(Rachel, e.g., 211-51). 9 I believe he will, as I am reassured by Jerome Bruner’s conviction that “[s]elf-making through self-narrating is restless and endless” (“Narrative

Creation” 84). In the meantime, there is value in preserving some of William’s life stories now, however imperfectly that is done, in order to resist and offer alternatives to the educational and medical case histories and other “auto/biographical fragments” that will continue to emerge and to define him (Fudge Schormans 117). The aim of my own participation in the narratives has been similar to Michael Bérubé’s in his autoethnographic book about his son with Down syndrome:

In these pages, I have tried to represent James to the best of my

ability. I have done so in the belief that my textual representations of him

might make his claims on the world as broadly and as strongly as

possible…. [A]s I write, we debate the meaning of words like “normal,”

“retarded,” “disability,” and, underwriting all these, “justice.” My task,

ethically and aesthetically, is to represent James to you with all the fidelity

that mere language can afford, the better to enable you to imagine him—

and to imagine what he might think of your ability to imagine him. (263-

64)

Like Bérubé, I have used language to represent my son and his complexities, hoping to make his “claims on the world” and to challenge the force of words like “retarded” and

“disability.” “Mere language” is what we have to work with when we attempt to create our own and others’ selves and lives. Language is also what shapes us and what we resist.

It offers a way to co-create meaning with other people and, occasionally, to share our

Harkin 46

embodied experiences as these emerge and as they change, which happens even while we live them and certainly when we revisit them.

As I proofread my paper one last time, I am struck by one of William’s statements in the “Himself” narrative: “There I am… and here I am…. You are here and somewhere? Jamesie and Caroline and Daddy are somewhere?” His words remind me that there is no single true William, no single true narrative about his life into which he is or should be firmly fixed. Instead, the narrative is always in a state of tension and flux as he both accepts and resists the discourses of deficiency that define him as someone unknowing (e.g., about death and loss) or capable of only limited participation (e.g., the achievement of certain limited goals) in the society around him. His narratives move and change, too, as he participates with others to create shared experiences and narratives, such as that of grieving and recalling a lost family friend. And at times these narratives flow and metamorphose like lived poetry as he both speaks and experiences them.

The life stories presented here do not, in the end, add up to a single “new” narrative that displaces authoritative and professional ones about people with developmental disabilities as an inferior and “separate category of human beings”

(Bogdan and Taylor 17). I hope that their complexity and fluidity may, however, suggest alternative ways of seeing and hearing people with developmental disabilities, and the lives they create and experience. I do know that as long as William has the will to tell his life narratives, I will have the will to listen and to share them.

Harkin 47

Together, for a moment, beside the hawthorn, November 19, 2009: When I told William I had finished writing his stories, he said, “Tell me?” I summarized the narratives, and he said it was “okay for peoples” (sic) to read them. He added, “I want my picture with them.” He liked this one because “it’s us.” There’s a picture for my stories it’s good it’s me it’s ours Yes there’s a picture and it’s good and it’s us and it’s yours

Harkin 48

Acknowledgements

I am grateful to my son William Harkin, who has allowed me to live many wonderful and unexpected stories, and to the poet and my friend Craig Arnold (1967–

2009), who made me believe my words were worth sharing.

I thank my other family members, Michael, Caroline, and James Harkin, for their encouragement and their cheerful and thoughtful participation in my research.

I also thank Dr. Carolyn Redl, my project supervisor, and Professor Reinekke

Lengelle, my second reader, for their inspiring guidance and support during my work on this project and throughout my time in the Master of Arts—Integrated Studies program.

Harkin 49

Notes

1 While I often use the now generally accepted “people first” language by

referring to a person who “has” a disability rather than to a “disabled person,” I do not

always do that in my paper. Stating that someone “has” something implies that it is a

problem that could or should be cured, and I do not believe that. Further, regardless of

whether the term “developmentally disabled person” or “person with a developmental disability” is used, a definition and a label are applied to a person.

2 Autoethnographic research and writing can produce autobiographical and/or

auto/biographical texts, as well as biography (i.e., the creation of another’s life story).

However, an autoethnographic text must involve the researcher’s reflexivity and consider

social as well as personal issues (Reed-Danahay 408). This means that autobiographies

and biographies are not necessarily autoethnographies.

3 Kim Etherington also mentions the healing possibilities for writers of

autoethnography (145-46). I feel healing has occurred for me during my research and

writing, but I have tried to make my own healing less dominant than William’s stories,

William himself as a study subject, and the social issues under discussion. To some

extent, the healing has occurred “offstage” or outside the text.

4 A variety of other approaches to autoethnographic writing exist, such as Michael

Angrosino’s fictional stories about a group of men with developmental disabilities (43-

264), Stacy Holman Jones’s autoethnographic theatrical performances (768-73), and

Laurel Richardson’s poetry (Fields 175-79).

5 In Riding the Bus with My Sister, a memoir about herself and her developmentally disabled sister, Rachel Simon describes conflicted feelings similar to

Harkin 50

Caroline’s and James’s. Simon complains, “She never volunteered information about herself, and when I divulged meager scraps about myself, she made no effort to respond.

This combination of guardedness and lack of interest annoyed me… (9). Yet she also sees her sister as strong, “exuberant and self-assured,” and agrees to join her, for a year, in her daily hobby of riding city buses (11).

6 I have placed my introductory contribution to the “Sparrows” narrative in italics, to distinguish more clearly between my text and William’s. The ellipses in William’s narrative indicate pauses in his speech.

7 In his story “Rebecca,” neurologist Oliver Sacks observes that if developmentally disabled people are “…allowed, or encouraged in, a personal development[,] the emotional and narrative and symbolic powers can develop strongly and exuberantly, and may produce (as in Rebecca) a sort of natural poet…” (175).

8 An exemplar of the vulnerable observer is anthropologist Julie Cruikshank, whose ethnographic research with elderly Tlingit and Athapaskan women involved establishing personal relationships that were “a source of enormous enjoyment for all of us” (16) and relinquishing control over the interviews and stories; the participants shared power with the researcher so that they did not simply respond to her questions, but decided what content they would provide and shaped the final ethnographic stories (14-

16).

9 Other books that include autoethnographic elements and involve the participation of adults with developmental disabilities are Sandra Kaufman’s Retarded

Isn’t Stupid, Mom! and Judy Barron and Sean Barron’s There’s a Boy in Here.

Kaufman’s book chronicles the life of her daughter from birth through the early days of

Harkin 51

her marriage. There’s a Boy in Here provides a mother’s narratives about her son’s autism, interspersed with his narratives about the same events.

Harkin 52

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