A Disability History of the United States

by Kim E. Nielsen

  THE LIVING OF DAILY LIFE

  The daily life of someone who was deaf, blind, moved with the rhythms of cerebral palsy, or who could not walk or had difficulty walking, is hard to discern for the centuries prior to European arrival in North America. While fundamental differences existed among the vast numbers of tribal nations, there are some commonalities that can help us understand daily life in this period. It is likely that being disabled had little impact on the measurement of an individual’s capacity. For example, a young child born deaf in an indigenous North American nation grew up nearly always being able to communicate with her community. She would not be physically segregated. The expectation would be that if she survived the vagaries of life to which all were exposed, she could find and enjoy a partner, and she would eventually grow old as a treasured elder who tickled and guided the children around her. If all were in balance, she would find her gift—perhaps weaving, perhaps gathering particularly delicious herbs—and share that gift with her community, who would then share their gifts with her. A successful healing ceremony, if one was thought needed, would balance and resolve whatever unease might have existed—but certainly no one would expect the young girl to hear, for such a result was not necessary.

  Nearly every indigenous-language group used signed communication to some degree, and many nations shared signed languages despite their verbal linguistic differences. Europeans documented use of signed language among North American indigenous peoples as early as the sixteenth century, and anthropologists and linguists generally agree that it was employed long before contact with Europeans. Signed language has been identified within at least forty different verbal linguistic groups. Today we know about indigenous signed languages because of its continued use by some elders, the anthropological work of scholars such as the Smithsonian’s Garrick Mallery in the late nineteenth century, films made by Hugh L. Scott in 1930 at the Indian Sign Language Council, and the tenacious scholarship and activism of contemporary linguists such as Jeffrey E. Davis.

  The most widely used signed language spread across an extensive region of the Great Plains, from Canada’s North Saskatchewan River to the Rio Grande, from the Rocky Mountain foothills to the Mississippi-Missouri valley. What is now referred to as the Plains Indian Sign Language (PISL) enabled communication across communities regarding trade, in critical political negotiations, and even in courtship. Great Plains peoples used this “signed lingua franca,” as Davis has characterized it, within their communities as an alternative to spoken language for ritual or storytelling purposes—and, of course, as a primary language for deaf people and those around them. Its use intensified after the European introduction of horses and the increased language contact that accompanied nomadic life. Though proficiency varied among individuals and among nations, the existence and steady use of signed languages meant that deaf and hard of hearing people had a language ready and, quite literally, at hand.12

  The young girl born deaf could have relied on signed communication. Her hearing family members, too, knew that if their hearing diminished as they grew older, they could rely on signed communication. As this girl grew to adulthood, she could express pleasure at a good meal, signify a fair exchange of weaving, or reassure her own daughter that she had collected enough reeds. Nearly wherever one went in North America in the period prior to the arrival of Europeans, its indigenous peoples, whether deaf or hearing, could signify satisfaction by holding their right hand at their throat, palm down, and then moving it forward several inches. She likely would have done so too.

  The social context of a widely used signed language shaped the meanings and implications of deafness. Given that both hearing and deaf people used this language, and given its integration into daily life and indigenous practices, deafness from birth or the loss of hearing at any point in one’s life would not have meant social isolation. It would not have excluded someone from leadership or meaningful and reciprocal relationships with hearing people. If one became deaf, one could remain connected to the community with few changes.

  The harsh conditions of life in indigenous communities routinely scarred and altered bodies, despite individual skill or carefulness, such that bodily variabilities were the norm. The physical requirements of a nomadic life such as that lived by Great Plains indigenous peoples, for example, would have taken their toll. Fiercely cold weather resulted in frostbite and the loss of fingers or toes. Conflicts or accidents could mean the loss of limbs or eyesight, or cause head trauma or impaired mobility. Illnesses and disease also altered bodies. Men, women, and children minding or hunting animals might be bitten, trampled, or accidentally cut by arrows or knives. Pregnancy or birth complications could cause chronic pain, and occasionally prolapsed uteruses and resulting mobility limitations. All bodies likely and eventually became transformed, and thus bodily differences were unremarkable. Noted one Native scholar writing of mountain lion and bear attacks, smallpox, conflict, and disease, “Acquired handicaps were so common that little attention was paid them.”13

  Because indigenous worldviews rested on the core belief that all had gifts, aging and the bodily changes that accompanied it did not lead to an assumption of diminished capacity (as it often does today in the dominant US culture). Elders, like all others, had gifts to share—though, like all others, their gifts might change throughout life stages. Communities assumed that elders could and should exercise leadership and guidance—regardless of age-related diminishment; regardless of limbs altered by accidents, conflict, or cold weather; and regardless of minds perhaps not as quick as they once were. Indigenous communities embraced aged bodies and minds that other cultures disregarded as inconsequential.

  This is not to imply that the physical differences today referred to as disability were without consequence in indigenous societies prior to the arrival of Europeans. On a fundamental level, the consequences could be very stark. The realities of weather, geography, periods of conflict, and the physical requirements of hunting and gathering societies meant that newborns and individuals with physical trauma sometimes simply died. A disability that today could be successfully managed over the course of a long and healthy life might, under the physical conditions of indigenous groups, result in death.

  And communities did make distinctions with respect to variance. In the Hopi nation, disabilities that emerged any time after birth were understood to come as a result of a deviation from the Hopi way of life. Anything from diminished vision to poor bladder control to a paralyzed limb meant that the individual had digressed, even ever so slightly, from Hopi ideals. Blindness, for example, like all other disabilities, “may have occurred at age eighty-five, but was still considered un-Hopi because the natural state of Hopi life is perfect health, no matter what the age.”14 In consequence, no one could avoid the physical changes wrought by deviating from the Hopi way.

  The Hopi and other indigenous nations could also ascribe negative cultural values to disability. If balance and harmony were the goal, and if imbalance and disharmony could be manifested via bodily and mental differences, stigma—or at least unease—could be and sometimes was associated with the bodily and mental differences that we today call disability. Even if balance was restored during a healing ceremony, the physical sign of an individual’s prior imbalance remained literally marked on the body.

  As the historian Tom Porter (Sakokweniónkwas) details, in the Iroquois Constitution taught by the Peacemaker, people who were deaf or hard of hearing, blind, or had limited mobility could not become chief. Chiefs who became disabled while serving as leaders did not lose their positions, but it then became the duty of sub-chiefs to assist them.15 As Porter explains it, this was due not to stigma but to the tasks demanded by the position. The ideal, of course, was one of balance. Ideals, however, are often hard to live out; and it is important not to unduly romanticize indigenous-nations communities. Despite the teachings of one’s communities, human beings do stray. The fundamental mind-set of indigenous nations emphasizing balance and reciprocity
, however, later contrasted sharply with that of Europeans.

  ________

  Prior to European conquest, the worldviews of indigenous peoples understood body, mind, and spirit to be one. These beliefs allowed for fluid definitions of bodily and mental norms, and fundamentally assumed that all had gifts to share with the community—and that for communities to exist in healthy balance, each individual needed to do so. A young man who no longer controlled the movements of his arm after falling from a tree or cliff while scouting neighboring peoples would learn other means by which to hunt, fish, drum, and please his sexual partners. His gift might be that of sharing and teaching the community’s past. If the community was flourishing and resources were plentiful, he would eat well. If times were hard, he, like all others, would go without. Perhaps his sister frequently spoke to beings that others did not see, and her frequent and unpredictable vocalizations made successful hunting and fishing difficult. She may have been considered to have great insight into that which others did not understand, and others would come to her for guidance. Both individuals would have lived with family members, contributed to the community, and benefited from the community.

  Outside forces, however, would irrevocably and profoundly change North American communities—beginning with the arrival of Europeans in the fifteenth century and continuing for many centuries. The invasions of Europeans, the diseases they brought with them, and the increased military conflicts those invasions created, dramatically altered the experiences and bodies of indigenous people. Western concepts of wellness and medicine directly and tragically conflicted with the indigenous embrace of body, mind, and spirit as one. Any sense of mutuality between European and Native cultures was extinguished by disease, greed, and notions of cultural superiority. Within all of the cultures involved in this fateful meeting, cultural conflicts and influences forged new experiences and definitions of disability.

  TWO

  THE POOR, VICIOUS, AND INFIRM

  Colonial Communities, 1492–1700

  From the very beginning of the European colonization of North America, before the ships making the ocean passage even left European ports, disability and definitions of appropriate bodies and minds shaped the experience. Those directing the long voyages across the Atlantic excluded individuals with bodies or minds deemed undesirable or unlikely to survive the voyage, which could be arduous even for the most robust. Adventurers, wealth seekers, and colonists who died during the treacherous and generally unpleasant journey were simply thrown overboard. The determination of “able-bodied” depended largely on the perception that one conformed to communal expectations regarding class, gender, race, and religion.

  The Spanish were the first Europeans to explore the New World. Sponsored by the Spanish crown, Christopher Columbus led an expedition of three ships, landing in 1492 in what is now the Bahamas, and then Cuba. By 1592 explorers and colonists from Spain, France, and England had made their way by ship and foot around North America’s Atlantic coast, the Gulf of Mexico, and much of the Pacific coast, pushing ever inland. Some sought trading relationships, some sought slaves and riches, and others sought to establish permanent settlements. Everywhere Europeans went they encountered indigenous peoples of different languages, cultures, and histories. The first long-lasting foothold was that of the Spanish along the Floridian coast. Later, in the 1600s, the English and French began more permanent settlements in what is now Canada, New England, and as far south as Virginia. As settlements and trade expanded, the numbers of Europeans in North America grew.

  FIRST CONTACT

  To the indigenous people of North America, the arriving Europeans were odd and curious creatures indeed. The Jesuit missionary Pierre Biard and the Franciscan priest Gabriel Sagard assumedly were average-looking French men, but both wrote of the disgust with which indigenous peoples of New France (Nova Scotia) considered them and their bodies in the early 1600s. Sagard recorded how those of the Huron nation believed that his beard made him ugly and rendered him stupid. Biard made this observation: “They have often told me that at first we seemed to them very ugly with hair both upon our mouths and heads; but gradually they have become accustomed to it, and now we are beginning to look less deformed.”1

  Less deformed? The hairy face a sign of intellectual weakness and disfigurement? Indigenous definitions of normative bodies, at least those among the Huron of New France, definitely did not include hairy mouths and heads.

  It’s hard to exaggerate the cultural confusions and misunderstandings between European and North American peoples in the first centuries of European arrival. The peoples of the two continents interpreted the workings of the world, and each other, in radically different frameworks. Even good intentions could be and often were profoundly misinterpreted. It’s also hard to exaggerate the violence, cruelty, and fears that permeated most encounters.

  Communication difficulties exacerbated tensions and contrasting goals, but each group used their bodies and hands to communicate. Members of indigenous nations were accustomed to communicating with those speaking other languages by hand gestures or, more successfully, the signed languages that spread across much of North and Central America. Bernal Díaz del Castillo and Álvar Núñez Cabez de Vaca reported using hand signs to communicate with indigenous peoples, but neither man recorded the specifics of these signals. When the Spanish expedition led by Pánfilo de Narváez embarked around what is now Tampa Bay, Florida, in 1528, his chronicler Cabeza de Vaca wrote of the people they encountered, “They made many signs and threatening gestures to us and it seemed that they were telling us to leave the land, and with this they departed from us.” The signed communication must have been relatively complex as well as comprehensible, for when Cabeza de Vaca washed ashore near today’s Galveston Island, the indigenous peoples told him via sign “that they would return at sunrise and bring food, having none then.” Cabeza de Vaca recorded encountering people accustomed to using manual communication as far away as the Gulf of California. Francisco Vásquez de Coronado wrote similar accounts in 1541.2

  The Spanish explorers assumed they encountered discrete gestures—not a language. Today’s scholars confidently argue that signed language among indigenous nations served deaf and hard of hearing people as well as the communication needs of peoples of different languages. European explorers benefited from already existing signed languages or signed communications, but dismissed them as unsophisticated hand signals. Spanish explorers were contemporaries of the Spanish Benedictine monk Pedro Ponce de León (1520–1584), who was just beginning to argue that deaf people could be educated and is credited with developing the first manual alphabet. North American indigenous sign languages thus existed long prior to any signed language in Europe. (France, the home of other early explorers, became a leader in deaf education, but not until the 1700s.) Members of indigenous nations believed that people born deaf had intellect and personal capacity. European peoples tended to believe the opposite. The European assumption of the inferiority, the primitive savageness, of the North American peoples they encountered made it additionally unlikely that they would recognize that indigenous peoples had developed something Europeans had yet to accomplish.3

  Signed language, however, was not enough to bring cultural harmony.

  DISRUPTION, DISEASE, AND DISABILITY: EFFECTS OF EUROPEAN INCURSION

  Those who survived the grueling ocean passage from Europe tromped with relief and trepidation onto the unfamiliar landscapes of North America, carrying with them household items and clothing as well as weapons and disease. Disease, more than weapons, profoundly affected and decimated the bodies, and thus the societies, of peoples already living on the continent. The smallpox, measles, influenza, bubonic plague, cholera, whooping cough, malaria, scarlet fever, typhus, and diphtheria that Europeans carried with them brought massive death as well as blindness, deafness, disfigurement, and the loss of caregivers to indigenous North Americans. The lack of acquired immunological resistance and a relatively homogeneous gene pool
among Native peoples, as well as malnutrition and environmental stressors, facilitated the spread of disease. The social chaos caused by massive death rates forced changes in community interactions and reciprocity, and profoundly altered lives. Colonial efforts to expand settlements, the enslavement of Native peoples by the Spanish, and the consequential slave trade that emerged in the southeastern parts of North America, as well as the movements of peoples and goods along the commercial trade routes used by the French, Spanish, and British, also sped the spread of disease.4

  Disease epidemics were widespread. The first recorded epidemics swept through New England in 1616–1619, killing an estimated 90 to 95 percent of the indigenous Algonquian peoples living there. Throughout the 1630s and 1640s smallpox claimed approximately 50 percent of the Huron and Iroquois people living in the Saint Lawrence River and Great Lakes region. Scholars estimate that along what became the southeastern US coastal areas of Virginia, the Carolinas, and Louisiana, less than five thousand indigenous people remained by 1700. Of the more than seven hundred thousand indigenous people in Florida in 1520, only two thousand surviving descendants remained by 1700.5