excerpt from “An End to Ableism in Higher Education”

(from a keynote given at the annual gathering of the Association of Higher Education and Disability, 2004)

small square of portrait of Eli by Riva Lehrer, a hand and tree branches

….Let me start with a story.

1969 in the backwoods of Oregon, I started the “regular” first grade after a long struggle between my parents and school officials who wanted me in the “special education” room. When I was two, my parents had taken me to a state-run hospital where a seemingly endless number of doctors, physical therapists, speech pathologists, psychologists, and who-knows-who-else put me through a battery of tests, designed, I suppose, to figure out what was “wrong” with me. I didn’t yet talk and so was given an IQ test that relied not on verbal skills but on fine motor coordination. And I, being a spastic little kid with cerebral palsy, failed the test miserably. I simply couldn’t manipulate their blocks, draw their pictures, or put their puzzles together. In the end they diagnosed me as “mentally retarded.”

Nonetheless, four years later my parents won their struggle with the school district. They insisted on another IQ test. And I, being a white kid who lived in a house surrounded by books, ideas, and grammar-school English, a disabled kid who had finally learned how to talk, scored well. The school relented and placed me in the “regular” first grade. It also helped that my father taught in the same district and that the first grade teacher knew my family and liked me. I became the first disabled child to be mainstreamed in that school. Eight years later, the federal government finalized Section 504 of the Rehabilitation Act and the Education for All Handicapped Children Act, which would later morph into IDEA, the first laws requiring public schools to provide education—and when possible, integrated education—to all disabled kids. By the mid-1980s mainstreaming happened with some frequency, even in small, rural schools, but in 1969 I was a first.

I tell you this story as a doorway. I can’t think about disability and education without thinking about the history of segregation, about my near miss and how that has shaped my whole life. I came of age in a decade poised between the near total exclusion, the exile, of disabled people from education on one hand and the beginning movement toward integration on the other. I dare say that if my parents had lost their fight and I had been placed in special ed, which at that time and place was no more than a dumping ground, I wouldn’t be here today, a writer, activist, thinker. Would I be in a sheltered employment workshop; would I live in my parents’ backroom or a nursing home? It’s hard to know, what-if questions being impossible to answer.

But what I do know is that the material, social, and emotional conditions of disability and education begin with these questions of segregation and integration. To put it bluntly, who gets in through the front door, who through the freight elevator, and who not at all? Certainly the conversation about integration and segregation in all their possible permutations is a complex one. The former isn’t completely good nor the latter completely bad. What is lost in an integrated, mainstreamed classroom when disability-related needs aren’t being met is huge, and what can be gained in a separate classroom designed to meet specific learning styles, access needs, and peer group dynamics is powerful. Nonetheless, the profound history of exile and segregation disabled people have faced at the hands of educational institutions has far-reaching consequences. Who gets to sit in the classrooms, study in the libraries, work in the labs, paint in the studios of universities and colleges….

copyright 2004, Eli Clare