At the End of Intellectual Disability
by Chris Kliewer, Doug Biklen, and Amy J. Petersen on March 25,2015
Following a recent panel discussion focused in part on the presumption of competence in children with complex developmental disabilities, a teacher approached one of us. She was visibly anxious. “I have a group of seven kids,” she softly explained, “ten-, eleven-year-olds. Most of them wear diapers … They are self-abusive … None of them really talk … How is it useful or even honest to not realize they are severely retarded?”
Frequently we each are approached with similar renditions of this forthright teacher’s earnest question. Ours is not, as she may have assumed, a project repudiating human variation. Differences exist. One individual uses a toilet at the age of three years. Another does not at twenty-three. One person speaks. Another may not. What matters in regard to a life fully lived is the manner in which those differences are cast, considered, imagined, and acted upon.
Intellectual disability (the current nomenclature replacing retardation) is someone’s claim made about the other; it is both a hypothesis and a judgment of innate deficiency assigned from a position of cultural power, privilege, and authority. Intellectual disability is a metaphor: It is as if this person with limited spoken language has no concepts about which to express. It is as if her mind is slowed, impaired, or deficient. “The mentally retarded,” explained disability rights pioneer Burton Blatt (1973), “are no more people than is the photograph of a person.”
Yet, at some point in history, the metaphoric nature, the as if of assigning intellectual disability, was obscured within the argot of professions scrambling to construct a science of human deficiency. Intellectual disability is not science. It is a culturally agreed upon lens that insidiously Photoshops select scenes of an individual’s life, the dataset so to speak, into a particular frame. The predictive veracity of the hypothesis exists only in that people so cast commonly find themselves bounded in social arenas bereft of real opportunity or possibility. This has occurred on a person-by-person basis adding up to countless numbers but has also enwrapped vast segments of whole social categories including, for instance, people of color in the United States.
Our consideration of the end of intellectual disability began years ago and has continued in excellent classrooms around the world, in the living rooms of family homes, and in other locations where the delimiting contours of intrinsic deficiency have been set aside. We are participants among communities whose most vulnerable members are interpreted as rightful, valued, and thoughtful citizens. Supports are provided in order to foster opportunity and connectedness. When success occurs, those supports are enhanced; they are not removed for purposes of assessment. Expectations do not exist in traditional graded fashion, whether low or high, but rather in an open format with possibility as the primary guide.
There is nothing wrong with metaphors, but when invoked we need to ask whose interests are served. The teacher who asked our opening question critically acknowledged her students’ marginalization: “We only get to go to the library every three weeks,” she sighed toward the end of our animated conversation. The idea of presuming competence asks us to adopt an alternative orientation; the construct is a reminder that the responsibility for student learning demands an ideology of open possibility, hopeful communities, and determined, engaged educators. Possibility alone is not enough to deliver the promise of valued connectedness and competence for every student, but it is the place to begin at the end of intellectual disability.
Blatt, B. (1973). Souls in Extremis: An anthology of victims and victimizers. Boston: Allyn & Bacon.