A Disability History of the United States (3 page)

Being a historian, a feminist scholar, and a disability studies scholar makes this both easier and harder for me. My daughter struggles with how to reconcile her own desire
not
to be a wheelchair user,
not
to be different, with her own experiences of people with disabilities as normative human beings who live full lives. As do I. While I and others in disability studies have critiqued the framework that defines disability as a medical issue, the initial lack of a diagnosis (and doctor disagreement about it) forced me to wrestle with how emotionally reliant I am on that part of the medical model of disability. The stereotypical responses of some extended family members and friends that disability-is-tragedy have not been helpful. People have used the word “inspiration” regarding my family’s experience (and I’m just the mother)—the very word I’ve fought to avoid using regarding Helen Keller and Anne Sullivan Macy. I’m experiencing how disability profoundly affects an entire family. And I’ve learned that an unexpectedly large number of strangers feel it is appropriate to ask, “What’s a pretty girl like you doing in a wheelchair?”

This experience has affected
A Disability History of the United States
in tangible and intangible ways. Most immediately, it delayed and prolonged the writing process. Intellectually and emotionally, it deepened the book and made it better. Most profoundly, I expect, it significantly but subtly altered the questions I ask.

This is a different book than the one I started, for I am a different person, and I live in a different family, than existed several years ago.

Making my daughter laugh until she tips over and falls down is really, really funny. Her core body muscles are so weak that strong laughter makes her fall over. My husband, Nathan, did it first. As my youngest daughter prepared to be Mary in the church Christmas program, my husband tried to convince her to yell, “My God, it’s a girl!” at the pivotal moment. My newly disabled daughter laughed so hard that she fell on the kitchen floor and couldn’t get up. That day medication had puffed up her back and arms, making them tender to the touch. Picking her up from the floor caused more pain, which somehow made the maneuver so precarious that we laughed even more. As we’ve lifted her from the floor I’ve learned a great deal.

The wonderful, delightful, confusing, and frustrating paradox of disability is that I am also the same person, and I live in the same family, that existed several years ago.

The stories, wisdom, and history of the Iroquois, passed down by family and clan members, tell us that long before the arrival of Europeans to North America, a Huron man brought the Great Law of Peace to the Iroquois—first to the Mohawks, then the Oneidas, the Cayugas, the Senecas, and ultimately to the Onondagas. The Peacemaker shared the Kaianere’kó:wa, the Great Law, as the Mohawks refer to it, as a pathway to restore peace, compassion, righteousness; and as a way to develop the strength necessary to live out the law. The Peacemaker gave the Kayanl’hsla’kó, as the Oneida people call it, to all individuals and communities of the People of the Longhouse.
¹

One day, as the Peacemaker was teaching the Mohawks, a sad man named Aionwahta (sometimes referred to as Hiawatha), who had lost his family to death, came to Mohawk country. The Peacemaker consoled him. He was happy to see Aionwahta. In fact, he had been waiting for him. Mohawk accounts indicate that Aionwahta went on to serve as an “interpreter” or “spokesperson” for the Peacemaker, necessary because the Peacemaker had a stutter that made it difficult for people to understand him. Aionwahta understood him, however, and was able to convey his words to the community. With Aionwahta, the Peacemaker reminded the People of the Longhouse of the Creator’s desire for harmony.

In the traditional indigenous worldviews of North American peoples, it is believed that every person and thing has a gift (a skill, ability, purpose). When individuals, communities, and the world are in harmony, individuals, often with the help of others, find and embrace their gifts and put them into practice. The Peacemaker, for example, had tremendous insight but needed Aionwahta to successfully transmit his wisdom to the people. A tulip blooms in the spring but provides no beauty in the fall. All that is in the world, when in a healthy balance, have the gifts to accomplish needed tasks. When in harmony, and as members of a shared community who live out reciprocal relationships with one another, individuals share their gifts and benefit from the gifts of others. Defining someone simply by their gift—pottery, for example—or conversely by that which they could not do—climb trees, for example—would never be done. Balance requires that the entirety be recognized and embraced.

Disability has a history among North American indigenous people—a history, like all histories, profoundly shaped by social factors and basic cultural understandings of the world and its people. There is no doubt that prior to the arrival of Europeans in North America, just as today, bodies varied. Means of mobility, the sensory reception of the surrounding world, cognitive processes, and body mechanics were assorted and changeable. Their meanings were also assorted and changeable.

More accurately, and paradoxically, however, disability
does not
have a history among North American indigenous people. Most indigenous communities had no word or concept for what in American English we today call “disability.”
²

Indigenous scholars and activists Dorothy Lonewolf Miller (Blackfeet) and Jennie R. Joe (Navajo) suggest that some indigenous nations have defined what might be called disability in relational rather than bodily terms. In indigenous cultures, “disability” occurred when someone lacked or had weak community relationships. Though individuals might experience impairment, disability would come only if or when a person was removed from or was unable to participate in community reciprocity. For example, a young man with a cognitive impairment might be an excellent water carrier. That was his gift. If the community required water, and if he provided it well, he lived as a valued community member with no stigma. He participated in reciprocity and lived in balance. His limitations shaped his contributions, but that was true of everyone else in the community as well.
³

After Europeans arrived in North America and created institutions for people with disabilities, indigenous families were more reluctant than other social communities to hand over their family members to outside care. Miller and Joe attribute this to the relational definition of disability. As long as an individual could sustain meaningful relationships that involved emotional or labor reciprocity—regardless of cognitive, physical, or emotional capacities—and lived out balance, they were not considered disabled. Reciprocity and its consequential ties mattered foremost in defining someone’s competency.
⁴

Generally, indigenous peoples understood the relationship between body, spirit, and mind very differently than the Europeans who later made their way through North America, the Africans forced in chains to the continent, the Asians who arrived to work the railroads in the nineteenth century, and contemporary peoples. Indigenous worldviews rest on the interwoven nature of body, spirit, and mind. Just as the contemporary word “disability” had no comparable concept, the contemporary phrase “able-bodiedness” would have had little meaning. Because the body was not separate from one’s spirit and mind, an “able body” in and of itself would be inconsequential. Only if the spirit, body, and mind were in harmony did indigenous communities consider a person to be well—regardless of whether that person was blind, experienced chronic pain, or walked with a dance-like lilt. Most indigenous communities did not link deafness, or what we now consider cognitive disabilities, or the shaking bodies of cerebral palsy, with stigma or incompetency. Stigma and a need for community intervention came only when one’s body, mind, and spirit were in disharmony. Thus, one’s body or mind could lack what is today called disability, could lack what is today called illness, but still be considered imbalanced.
⁵

For example, Navajo peoples of what is now the southwestern United States believed that bodily differences at birth (for example: a flipper-like limb, a cleft palate) were caused by parental actions resulting in imbalance, such as touching objects struck by lightning; incest; marrying within one’s clan; or other taboo transgressions. A proper response thus involved discerning the cause of the impairment and restoring balance to the spirit with an appropriate healing ceremony. The “problem” was not the impairment, but whatever imbalance had caused it. The cleft palate would not go away, but its problematic nature could be resolved, and thus balance would be restored.
⁶

The Hopi believed that improper actions could result in bodily differences for oneself or one’s family members. Injuring an animal without prayers of apology, or ridiculing an animal’s weakness, could cause disharmony manifested in the body. As told to Native scholar Carol Locust, one Hopi woman “was born with a club foot because her father had trapped a porcupine and cut off its forefeet.”
⁷

Similarly, Apache peoples believed that crooked legs or arms could result from parental violation of taboos regarding bears. Speech problems could be induced if a pregnant woman ate quail eggs. Palsy or a difficulty controlling facial or mouth muscles could come after a pregnant woman ate deer or elk meat. Among the Apache, surviving to old age meant that one had managed to stave off the “malevolence of the supernatural world” that could make physical survival difficult. Because avoiding taboo acts or places, and steering clear of witches, was not always possible, stigma did not always accompany the physical consequences of such contact.
⁸

Furthermore, as Locust explains it, most tribes teach that “the spirit chooses the body it will occupy. Thus each person is responsible for who and what he is; he cannot blame others for the shortcomings of his body.” Spirits choose their physical bodies in order to accomplish their purpose. If an individual does not meet his or her purpose, it is not the fault of the body—regardless of what that body can or cannot do.
⁹
When a balanced spirit is what matters, varying bodies matter less.

Similarly, indigenous nations had little or no concept of mental illness prior to European contact, only the recognition of unhealthy imbalance. Separating the mental from the physical or spiritual made no sense in this cultural context. Some groups viewed the behaviors and perceptions of what today we call psychological disability as a great gift to be treasured and a source of community wisdom. Others considered them a form of supernatural possession, or evidence of the imbalance of an individual’s body, mind, and spirit. Because blindness and what is today called a psychological disability, for example, or a psychological disability and chickenpox, might be caused by similar disharmonies or the breaking of taboos, their treatments might also be similar and would have the same goal of restoring an individual’s harmony.
¹⁰

The human variabilities today referred to as disability certainly existed and have histories among the vastly disparate indigenous nations of North America. Eyesight, mental acuity, hearing, and the means of mobility varied among individuals; some bodies had one arm rather than two, and some had one leg significantly shorter than the other leg. Spiritual insight, leadership skills, and the ability to make pots that did not leak also, however, varied from person to person. Most indigenous communities considered all of these variations—whether physical, intellectual, spiritual, or functional—part of the same spectrum. Not surprisingly, the ways in which indigenous North American peoples understood themselves and their world shaped their understandings of physical, spiritual, and mental differences.

These understandings varied widely because the indigenous nations of North America understood themselves and the world around them in disparate ways. When Europeans arrived on the continent, they did not find a group of people who we today refer to as American Indians. At the time of contact, the tens of millions of North American indigenous peoples composed separate cultural and political groupings, speaking as many as twenty-five hundred distinct languages.
¹¹
They lived in diverse climates, in political groupings from the small to the very large and powerful, with widely divergent belief systems, and in physical terrains ranging from plains to woodlands to deserts. In no way did these peoples consider themselves as sharing a cultural identity—that of
the
American Indian. There was no singular experience of disability, just as there was no singular definition of disability, among indigenous nations.

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.