Which philosophical approach(es) discussed in the Ornstein reading from HW1 best reflects Kliewer, Biklen, and Petersons thinking about education??Explain (2) ?Kliewer, Biklen, an

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Harvard Educational Review Vol. 85 No. 1 Spring 2015 Copyright © by the President and Fellows of Harvard College

At the End of Intellectual Disability

CHR ISTOPHER K LIEW ER University of Northern Iowa

DOUGL A S BIK LEN Syracuse University

A M Y J. PETER SEN University of Northern Iowa

In this essay, Christopher Kliewer, Douglas Biklen, and Amy J. Petersen unravel the construct of intellectual disability that has dominated both policy and practice in schools and communities. The authors synthesize data from first-person narratives, family accounts, and participator y inquir y to propose a theor y of human connected- ness in which intellectual competence is constructed through social action and inter- action. The authors trace the isolating, brutalizing, and dehumanizing consequences of the presumed “nothingness” associated with those labeled as having an intellectual disability and, by way of contrast, integrate written and video data that offer coun- terpoints to the notion of intellect as immutable and individual. The authors discuss the development of supports in valued arenas where the right to belong and to par- ticipate is realized without question; the provision of resources and materials based on affirmation, actualization, and empowerment; and the fostering of surrounding communities comprised of committed individuals who have stepped apart from deficit ideology and who are open to self-critique, surprise, and learning. The authors pro- pose that in these contexts is found the end of intellectual disability.

Beginning in infancy, Sue Rubin’s developmental trajector y dramatically strayed from conventional age-based standards and expectations. In the Oscar-nominated documentary Autism Is a World (Wurzburg, 2004), written by Rubin, her mother, Rita, recalls that as a young child “Sue didn’t really give us a lot of hope. She did a lot of self-abusive behaviors,” including biting and banging her head against windows, concrete surfaces, and walls. When Sue turned four, her family took her to a university psychologist for evaluation of “autistic tendencies.” In the documentary, Rita relays memories of the doctors describing her daughter’s behaviors as permanent: “Forget the tendencies. She’s really autistic.”

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Among the developmental domains, Rubin’s limited speech emerged in sporadic, echolalic, and dialogically nonsensical forms. Her fine motor move- ments appeared impulsive, awkward, and often random. She did not approach relationships and interactions in a manner understood by others. As Rubin got older, repeated psychological assessments documented her cognition as stalled at the stage of a toddler, suggesting a profound social and intellec- tual disconnectedness with the surrounding world. When she was thirteen, Rubin’s tested intelligence quotient (IQ) stood at 24 (see also Rubin et al., 2001). Rubin’s extremely low IQ scores in combination with adaptive func- tioning deficits, described by the American Psychiatric Association (2013) as a “failure to meet . . . sociocultural standards for personal independence and social responsibility” (p. 33), resulted in Rubin being categorized as severely mentally retarded.

Once an individual is cast into a developmental disability category, sources on this subject often express a singular discourse of educational, sociocul- tural, and intellectual incompetence and perpetual disconnectedness (Galla- gher, Connor, & Ferri, 2014; Smith, 1999). The most recent incarnation of the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) sup- plants mental retardation with the current preferred label intellectual disability (APA, 2013; Rosa’s Law, 2010). However, any corresponding revisions to per- formance expectations or potentials remain mired in the prevailing discourses of hopeless disconnection. For instance, for those categorized as profoundly intellectually disabled, the DSM-5 (APA, 2013) reduces human interaction to “nonsymbolic communication” (p. 36), and community participation to exam- ples of the person “carrying dishes to the table . . . [finding] enjoyment in lis- tening to music . . . or participating in water activities” (p. 36).

The grand narrative of severe disconnectedness mapped out the educa- tional opportunities and expectations thought possible for Rubin. In the doc- umentar y (Wurzburg, 2004), Rubin’s mother explains, “We knew that she would be retarded . . . and we knew that she would be educated in special day classes with other people with severe handicaps.” During a key-by-key typing scene, this perception is challenged when Rubin ponders, “Was I retarded?” With the voice of actress Julianna Margulies narrating, Rubin continues, “I certainly understand why I was assumed to be retarded. Perhaps I was.” Ironi- cally, Rubin’s acceptance of the reality of her own cognitive vacuity exposes at the immediate level the unreality of intellectual disability in her own life. Pondering one’s lack of capacity to ponder contradicts more than a centu- r y’s worth of accumulated scientific and educational dispositions regarding the innate and immutable reality of the grand narrative of intellectual deficit (Danforth, 2014).

In this article, we link the experiences of Rubin with other data –– such as first-person accounts, family narratives, and participatory research, includ- ing our own field work —to expose and deconstruct the pessimistic fable of intellectual disability.1 The meta-tale no longer holds. In its place, we pro-

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At the End of Intellectual Disability christopher kliewer, douglas biklen, and amy j. petersen

pose a theory of human variation associated with intellect premised on human connectedness, inclusion, and the presumption of competence (Artiles, 2003; Biklen, 2005; Danforth, 2014; Gallagher et al., 2014; Ginsberg, 2002; Hehir & Katzman, 2012; Kingsley & Levitz, 1994; Mooney, 2007; Petersen, 2009b, 2011; Sellin, 1995; Williams, 1992).

Intellectual Disability, Nothingness, and Connectedness

In Autism Is a World (Wurzburg, 2004), Rubin makes a reference to her exis- tence as “a nonperson.” This sentiment is echoed by modern-day blogger Amy Sequenzia, a disability rights activist who, in her youth, was labeled profoundly mentally retarded. Sequenzia (2012) blogs about sur viving within a spectral existence: “There were no expectations for me to fulfill because I was nothing.” Jamie Burke, a fellow activist who was also labeled on the autism spectrum, similarly notes, “Do you know that vintage movie, The Invisible Man? That’s how I’ve felt. The clothes were there but the body and soul felt like noth- ing. How can you live a life getting treated like that?” Burke’s description of his perceived nothingness appeared in the documentary Inside the Edge (Kasa- Hendrickson, Broderick, Biklen, & Gambell, 2002) depicting his struggle to develop understandable communication and, beginning in his teenage years, useful speech.

The Origins of Nothing and Disconnectedness Like Rubin, both Sequenzia and Burke have led lifelong struggles against the perception of significant intellectual disabilities foisted on them in daily experience and by the formal testing and diagnostic tools of psychology and education. The initial scientific legitimacy accorded to psychology was largely derived from early-twentieth-century efforts by those in the discipline to iden- tify and attribute mental defects through supposedly objective and quantifi- able means (Danforth, 2014; Slee, 2004). For example, in 1905 Alfred Binet and his student Théodore Simon, under the charge of the French ministry of education, developed a rather innocuous screening in order to identify chil- dren who might struggle at school (Pollack & Brenner, 1969). The test was efficient to administer, scored numerically, and correlated closely with teach- ers’ opinions of children’s educational levels (Gould, 1981). Gardner (2004) suggests a particular intention of this effort, noting that “Binet devised the first tests of intelligence to sift out retarded children” (p. 15).

Binet (1909) believed that his test did, in fact, assess children’s intelligence; however, he understood this to be neither a fixed nor innate construct. Intelli- gence, according to Binet, was complex and largely a concern of environment and opportunity (Gould, 1981). Portending debates to come, within a short time after the test’s introduction, Belgian researchers working from a model of intellect as innate and hard-wired proclaimed that Binet’s test proved that their nation’s children were inherently smarter on average than French chil-

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dren (Binet, 1909; Lewontin, Rose, & Kamin, 1984). In response, Binet (1909) warned,

Some recent thinkers . . . have given their moral support to . . . deplorable ver- dicts . . . affirming that an individual’s intelligence is a fixed quantity, a quantity that cannot be increased. We must protest and react against this brutal pessi- mism; we must tr y to demonstrate that it is founded upon nothing [emphasis added]. (p. 101)

Binet realized that nothing is always something; intellectual disconnected- ness is a form of connection, just a highly devalued and nonconformist one. The emergent field of psychology, Binet feared, was in danger of losing what he perceived to be its modernist optimism and promise as it veered away from the empirical into merely reifying the preexisting pessimism directed at those deemed unruly or disordered. For much of history, human defect had largely been left to the definitions and explanatory dogma of myth or religion, often resulting in isolation of or brutality toward individuals deemed intellectually disabled (Trent, 1994). Binet recognized the “empirical nothingness” out of which ecclesiastical and cultural prejudices were used to form “natural” hierar- chies of human worth. Binet’s Pollyannaish hope was that his fellow modern- ists in psychology might share a sense of human possibility born of an actual science to replace the existing myths that he characterized as empirical noth- ingness. However, he realized that this hope was quickly slipping away, and his sudden death in 1911 effectively silenced what might have been an influential and progressive psychological discourse on intellectual fluidity, malleability, and resilience (Trent, 1994).

In 1908 Binet’s intelligence test reached America’s shores and arrived in the hands of Henr y H. Goddard, a psychologist and head of research at the Vineland Training School for Feeble-Minded Boys and Girls, located in New Jersey (Trent, 1994). Goddard, an avowed eugenicist, had been strug- gling to develop a reliable social Dar winian scale for sorting individuals cast as mentally defective. In his revision of Binet’s test, Goddard (1911) believed he had formulated an apt tool to identify—and thus control—those deemed to be defective. His revision introduced the attribution of a numeric men- tal age to an individual. This construct suggested that one’s total intellectual performance could be expressed as the chronological age at which an aver- age person was said to reach the same abilities. Following this adjustment to Binet’s measure, Lewis Terman (1916) developed an iteration now known as the Stanford-Binet Intelligence Scale. IQ tests, most often divided into subsec- tions, were said to assess a subject’s capacity to reason using novel information, referred to as fluid intellect, and to effectively make use of existing knowledge to solve problems. Terman (1916), in authoritative terms, expounded on God- dard’s eugenics philosophy by suggesting, “[Through the IQ test] there will be discovered enormously significant racial differences in general intelligence, differences which cannot be wiped out by any scheme of mental culture” (p.

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At the End of Intellectual Disability christopher kliewer, douglas biklen, and amy j. petersen

91). Terman included Stern’s ratio between mental and chronological age and thus appeared to dissolve the dilemma of Binet’s “nothingness” by iden- tifying intelligence as an incarnate and measurable objective quantity. Subse- quently, the Stanford-Binet IQ was accepted by scholars and the general public alike as a predictive statistic that falls along a bell-shaped curve (Lewontin et al., 1984). Those who scored poorly or who were deemed to have less intel- ligence were thus perceived by psychologists and educators as possessing an objective and measurable disconnectedness from valued citizenship and full humanness (Smith, 1999).

Challenging Nothing and Disconnection

Over subsequent decades, the fields associated with defining and controlling disability reified notions of an objective, innate intelligence measured as a sin- gular, individualized quotient. Thus, it was business-as-usual when, in the late 1990s, psychologists assigned thirteen-year-old Rubin an IQ score in the low twenties and described her as possessing the mental capacity of a two-year-old (Rubin, 2005; Rubin et al., 2001). However, renegade researchers from within the field of psychology had begun theorizing models of social and multiple cognitions that ran counter to the grand discourse of a nativist and individu- ally autonomous intellect. These efforts suggested that intelligence was not a discrete construct locked within an individual; rather, it was fluid and multi- dimensional and flowed across relationships among surrounding people, materials, tools, opportunities, and expectations (Resnick, Levine, & Teasley, 1996).

Models of social cognitions range from the more progressively modernist to those that are increasingly radical in their interactional, constructivist, and contextualized orientations (Cole & Engestrom, 1993). For example, Gardner (2004), who is generally grouped with the progressive modernists, promul- gated a theory of intelligence that expanded the construct into what he now identifies as 8.5 autonomous multiple intelligences within each human being (the .5 being his somewhat facetious reference to an Existential Intelligence he has only preliminarily suggested). Gardner posits that the described intelli- gences, and others yet to be identified, do not function in isolation but exist in a transcursive fashion across an individual’s mind and between the mind and the social realm. Those capacities that have so far been named in his theory are identifiable today because the historical, cultural, and physical worlds have brought them forth and made them necessary and valued.

Though he recognizes the interactional nature of the multiple intelligences, Gardner (1991, 2004) insists that the 8.5 intelligences are not the relativistic whim of differing cultures and historic ages, manifesting here but not there; rather, they exist as biological truths across time and place (albeit varying in degree of value and visibility). Thus, Gardner’s work has firmly expanded the locations and ways in which one might have sought to understand Rubin’s

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mind when she was a child, and this might have been extraordinarily useful. But we are also left with a theor y that might simply have resulted in Rubin failing in 8.5 ways rather than one. Indeed, Gardner (1991) hints at the lat- ter possibility when, in describing the preschool years as the “age of symbols,” he qualifies the title as “true for normal [emphasis added] children the world over” (p. 56).

Appearing counterintuitive to the ensconced belief of intellect as an innate, wired possession of an individual, more radical conceptualizations of socially emerging cognitions heighten the roles of environment, history, and context (Groff, 2013). Herein, cognitive processes are considered to be distributed across members of a social group and the cultural tools that are crafted or are made available (Resnick et al., 1996). Salomon (1993) notes, “What charac- terizes thinking is that the social and artifactual surrounds, outside the head, not only are sources of stimulation and guidance but are actual vehicles of thought” (p. xiii).

Intellect as socially shared has been illustrated, for instance, as “transactive cognitive partnerships” (King, 1998, p. 14), in the context of peer-tutor rela- tionships, through which children in interaction mutually appropriate whole new cognitive avenues. Lebeau (1998) combines sociocultural and ecological psychology to describe the distribution of medical expertise across communi- ties of professionals and materials available resulting in qualitatively altered diagnostics and approaches to treatment. Others have focused on whole class- rooms as knowledge-building communities (Groff, 2013; Hatch & Gardner, 1993; Hewitt & Scardanalia, 1998) and suggest that individual competence is indivisible from group processing. Thus, the science of traditional psychol- ogy, which foregrounds individual intellect as objectively knowledgeable and measurable apart from the social context, requires a radical transformation. Within this revolutionized paradigm, “mind cannot be studied independently of the culturally organized settings within which people function” (Moore & Rocklin, 1998, p. 107).

The idea of cognition as situational and social has been applied to the complexities of school-based struggles in individual children and marginal- ized groups (Kincheloe & Steinberg, 1996; McDermott, 1999). However, stu- dents with presumed severe intellectual disabilities, such as Rubin, remain excluded—“examples where culture seems beside the point; where physiology has gone so far awry that it threatens to over whelm the social context” (Fer- guson, 1987, p. 56). The apparent absence of any reference to minds labeled as severely intellectually disabled within the psychological literature on social cognitions is disturbing. The omission is rationally interpreted to mean the models can only stretch so far. However, such a caveat invalidates the models as aptly descriptive of the breadth of human intellectual engagement. Conse- quently, for these theories of thought to hold, the minds, and thus the human- ity, of people labeled as severely impaired must be dismissed as irrelevant. We are left wondering if this is the operating presumption.

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At the End of Intellectual Disability christopher kliewer, douglas biklen, and amy j. petersen

From Nothing Toward Connection

In day-to-day life, apart from the formalities of psychological science, a compe- tent intellect has vernacularly been ascribed to those who perform in expected ways in the classroom, home, community, workplace, and other valued daily environments (Linneman, 2001). As such, colloquial judgments of another’s intellect are based on that individual’s conformity to the cultural mores of particular social situations and contexts. In essence, the better one knows and follows the rules, the more intellect one is said to possess.

In its effort to operationalize and scientize intelligence as an objective attri- bute subject to precise measurement and quantification, the field of psychol- ogy sought to disentangle the construct from the messiness of cultural and social contexts (Danforth, 2014). Intelligence was to be a detached, quantifi- able entity of mind that remained stable as an individual moved from situation to situation; it was to be an abstract cognitive aptitude that could both explain and predict an individual’s capacity to perform in any form of social environ- ment. However, in this endeavor to prove a detached global cognition, the architects of IQ merely reified the colloquial tradition requiring conformity to dominant norms. The test-taking structures themselves create a social context that demands conformity relative to the version provided. As important, the content presented in the tests forces the test taker to rely on what he or she has been taught, exposed to, or allowed to experience. In his classic analysis of the mismeasure of intellect, Gould (1981) provided multiple examples of context-bound, culturally idiosyncratic questions from the Stanford-Binet IQ tests, noting, “Terman’s tests stressed conformity with expectation and down- graded original response. When the expectations are society’s norms, then do the tests measure some abstract property of reasoning, or familiarity with conventional behavior?” (pp. 175–176). As such, judgments of one’s intellect remain wholly entangled with one’s behavioral and interactional conformity to established norms.

As was Rubin’s experience in childhood, Peter Gwazdauskas’s noncon- formist performances across context after context were consistently judged as failed, and significantly so. Born with trisomy 21, Gwazdauskas is featured in the Academy Award–winning documentary Educating Peter (Wurzburg, 1992), which focuses on Gwazdauskas’s third-grade year, when he transitioned from segregated special education for children with judged cognitive deficits into a regular education classroom. Trisomy 21, or Down syndrome, is an interesting genetic anomaly in that, despite a generally ignored body of evidence to the contrary, it is inextricably linked both professionally and colloquially to innate intellectual deficits (Kliewer, 1998).

In Autism Is a World (Wurzburg, 2004), Rubin describes her intellectual dis- engagement by saying, “I was lost in some way . . . Voices floated over me.” While with Educating Peter (Wurzburg, 1992) the audience is not privy to the same level of insider perspective, Gwazdauskas certainly does appear “lost in some way” as he shifts from segregated schooling into the hectic reality of a

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third-grade classroom. The documentary portrays Gwazdauskas as a stranger in a strange land, writhing on the floor in lone combat with a chair, prone to aggression, and demonstrating a general lack of competence within the pat- terns and mores of the elementary school. In one interview in the documen- tary, Gwazdauskas’s teacher, Martha Ann Stallings, explains, “I think Peter felt a little lost . . . He knew he was out of place.” Gwazdauskas’s peers appeared to feel the same way. This sentiment is illustrated in inter views early in the documentary when classmates disclose such things as, “I stare at him ’cause he looks different,” and “I was really scared of him kind of ’cause he was making these really loud noises.” One peer asks directly, “Why do we have him in this class? He’s not going to learn anything.”

As depicted in both documentaries, Rubin and Gwazdauskas eventually experienced a profound inversion of their social and intellectual disconnect- edness. In Rubin’s case, up to age thirteen she had been exposed to only minimal, highly rigid, and rudimentary efforts with alternative systems of com- munication apart from speech to indicate immediate physical needs. In an odd yet not uncommon conundrum, her spoken language was deemed to be so severely disordered that offering communicative alternatives was deemed hopeless (Rubin et al., 2001; Rubin, 2005). Rubin’s teachers believed that her speech reflected the ossified, unalterable rudiments of her intellectual capacity. When Rubin turned thirteen, however, these same teachers encoun- tered an augmentative and alternative communication (AAC) approach for people with severe communication struggles. Referred to as facilitated com- munication training (Crossley, 1997), the method appeared to address various motor movement and anxiety struggles that Rubin experienced. Employing the system, personnel at her school introduced Rubin to a simple alphabet board and a small keyboard from which she could select letters by pointing. A teacher provided her with initial physical support to stabilize, calm, and slow her arm and hand gestures as she reached toward the board. That human touch, provided at her hand, seemed to allow Rubin increased control over the initiation and direction of pointing. Within the realm of facilitated com- munication training, this stabilization through touch counteracts profound anxiety, sensory-perceptual, and physical movement struggles associated with autism and other developmental disabilities (Donnellan, Hill, & Leary, 2013; Kanner, 1943; Oppenheim, 1977; Torres et al., 2013). Following a trajectory documented for many people engaged in facilitated communication training, Rubin required less physical support as her pointing skills developed (Biklen, 2005; Mirenda, 2003; Rubin et al., 2001; Wilson et al., 2014). She now types to communicate without any human touch at all.

Wurzburg’s documentary reveals that, at first, Rubin’s physically facilitated pointing toward a keyboard was haphazard and only marginally decipherable. Just as Gwazdauskas did not immediately appear to fit into his newly inclu- sive third-grade class, Rubin did not immediately appear to benefit from her AAC method. However, in both situations, surrounding educators persevered.

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At the End of Intellectual Disability christopher kliewer, douglas biklen, and amy j. petersen

Rubin admits, “Progress was slow at first. I was a terrible subject.” Her mother pointed out that after four months of focus, much of Rubin’s typing remained as “gibberish.” At times, however, contextually meaningful letters and even whole words began to emerge. “My mom insisted that I practice ever y day,” Rubin recounts. “My mind began to wake up.” Regarding her daughter’s slow but ultimately dramatic progress, Rubin’s mother notes, “When it came time to go to high school, we knew that [Sue] had to be in regular classes in an aca- demic curriculum” (Wurzburg, 2004).

Rubin—surrounded by a committed team, in interaction with a tool for communication other than speech, provided opportunities in new environ- ments, and presented heightened expectations—was realizing an inversion of the nothingness out of which her presumed intellectual disability had been crafted. Similarly, in Educating Peter (Wurzburg, 1992), the audience is witness to an almost pure example of Vygotskian scaffolding (Daniels, 1996) as Gwa- zdauskas internalizes the literate, academic, and social culture of the class- room. Six months into the school year, a peer tells an interviewer, “He started reading; he started pasting; he started running and catching things; and he just changed it all.” One is left wondering what precisely occurred in his previ- ous segregated special education placements that left him so unprepared for a regular classroom setting. In one scene, Gwazdaskas participates in a science lesson in which he defines the term environment. A few minutes later he calls to the teacher and quietly announces, “I stupid.” He repeats this several times as if talking to himself. Rubin’s contemplation of her own intellectual incapac- ity was done retrospectively; and here, again, we are confronted by a person labeled cognitively deficient pondering his own intellect in the moment, a trait not found in the DSM-5 description of intellectual disability.

Realizing Connectedness and Competence

For Rubin and Gwazdauskas to experience an inversion of their defined intel- lectual disconnectedness, parents and teachers of the two young people sus- pended deeply held ideologies of deficit while engaging them in new contexts, thus fostering an ever-increasing social connectedness. This connectedness was based on radically altered expectations of social and intellectual competence (e.g., Collins, 2013). In both situations, immediate success was not expected; nor, in fact, did it occur. Human development is not a crash of cymbals but rather an elaborate symphony that plays out in movements (albeit with cre- scendos and moments of raging percussion). Suspension of a deficit ideol- ogy within contexts of heightened expectations requires recognition of the individual’s right to participate and an acknowledgment that she legitimately belongs in the newly crafted situations (e.g., Gwazdauskas in a third-grade classroom; Rubin within a communicative system responsive to her needs). The process toward ultimately and genuinely presuming competence requires perseverance on the part of team members, an openness to the possibility of

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learning something new and of being surprised by and about the individual and one’s self, and continuous effort at critical self-reflection and problem solving across multiple support personnel (Kliewer & Biklen, 2007).

Regarding Rubin’s case, belief in her intellectual incompetence was not immediately displaced but, rather, it was set aside while incremental success begat increasingly sophisticated success. As her capacity to communicate expanded with a certain few trusted individuals, she continued to experience high levels of anxiety in other situations, thus making her look highly incom- petent in some contexts but not in others (Rubin, 2005).

Gwazdauskas benefited from his educational team’s perseverance and com- mitment to his successful inclusion as a rightful member of the third grade. As with Rubin, the teachers’ communal efforts appeared to foster increased academic and social successes though struggles remained evident. His class- room teacher, Stallings, noted that in the seventh month of school, “Peter was still having a few outbursts [involving aggression], but they all occurred at the end of the day when it was time to get on the bus and leave his friends.” Peter was no longer an outcast at school. Stallings and her colleagues had changed their expectations: “I went from, ‘Peter, I’m not sure you can do some of the things I’m wanting you to do,’ to ‘Peter, I’m expecting you to do these things.’” One of his school friends explained, “He changed because we changed. He changed because we changed our minds about him.” In the doc- umentar y, Gwazdauskas is obser ved reading, writing, and engaging as a full citizen of the class in a variety of situations.

For both Gwazdauskas and Rubin, initial connectedness led to increasingly complex connections between the two and their surrounding worlds, further dis- solving perceptions of intellectual deficiency. For Rubin, connectedness that led to beliefs of intellectual competence opened and expanded her world; she graduated with a history degree from Whittier College and walked the Oscars’ red carpet. While he did not engage in grade-level schoolwork, Gwazdauskas’s academic participation expanded exponentially alongside his developing rela- tionships. One friend, who earlier in the documentary recounted being physi- cally attacked by Gwazd

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