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chapter 1 Disability Is Us remembering, recovering, and remaking the image of disability Laura Kissel (University of South Carolina) We must stop at its very source the pollution of the blood stream of the nation by properly enforced, sane eugenic laws. The Hope of The Nation: Perfect Babies.1 the black stork (1916) Impairment is the rule and normalcy is the fantasy. lennard j. davis, bending over backwards My brother, born two years before me, came into the world two months too soon, and very sick. He stopped breathing when he was only a few days old, and the delay of oxygen to his brain resulted in significant cerebral palsy. When I was three and my brother was five, we shared a bedroom, toys, a place at the dinner table, and almost everything else in our small Texas town. I never thought of him as different from me, of his body as different from mine, until I learned from others that he was different. I don’t remember the exact moment that I learned this, and my parents certainly didn’t teach it to me. My growing recognition of the insistent categorization of my brother as different paralleled my growing awareness of larger political and social struggles, namely the civil rights movement and feminism. I remember the reactions to my brother in the 1970s and 1980s, and the frequent refrain when people learned of his disability: I’m sorry. Sorry? As I revisit these scenes of segregation and pity, I find myself responding: Why are you choosing to see my brother as less—as retarded, crippled, and impossibly different? T4989.indb 17 T4989.indb 17 2/27/09 6:57:05 AM 2/27/09 6:57:05 AM 18 laura kissel My brother was born in 1967, a year marked by race riots, Vietnam War protests, and the ongoing national struggle for racial equality and civil rights. The disability rights movement was in its infancy, emerging from other civil rights struggles in the year of my brother’s birth. Affirmative action was extended in 1967 to include discrimination based on gender, yet civil rights legislation that addressed employment and equal access for people with disabilities was still twenty-three years away.2 I was born two years later, the same year the now ubiquitous line drawing of a wheelchair user was introduced as the universal symbol for accessibility. My sister was born the year the Equal Rights Amendment (era) was ratified by Congress, the same year as the parc v. State of Pennsylvania ruling, in which a U.S. district court declared unconstitutional state laws that barred disabled children from attending public schools.3 In addition to this backdrop of social and political change, our parents were strong proponents of the Catholic doctrine of social justice. The concept flowed naturally from my parents to us that everyone deserved dignity and equal political, economic, and social opportunities. My parents became adults during the emergence of civil rights for many people who had been marginalized and discriminated against because of their difference from the accepted norm—white, male, and able-bodied. When my brother was still very young, a doctor told them, “Put him in an institution and get on with your life.” Institutionalization would have meant isolation, segregation, and the abandonment of my brother’s care to a state-run, bureaucratic structure that was more like a prison than a family. Institutionalizing my brother would have denied him agency, choice, and dignity. For my parents, this was not an option. In the 1970s and 1980s I learned about difference in subtle and powerful ways. My parents advocated with other parents for my brother ’s right to a public education. My mother supported passage of the era. She confronted our priest about restrictions against women in the Catholic Church. I was driven to the other side of town to attend an integrated school with Hispanic and African American kids. Difference , I learned—whether gendered, racialized, or otherwise defined through the body—is often enforced by society, defined by those with power, and maintained by law, doctrine, and culture. In 1982, my parents packed us into a station wagon and took us on a road trip out West. It is almost too easily dismissed as a mundane fact: the family on summer vacation. We trekked to the Rocky Mountains , Yellowstone National Park, Mount Rushmore, and the Badlands of South Dakota during the high heat of summer. We...


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