Dan Wilkins, Director of Public Relations for the Ability Center of Greater Toledo, and Nicholas Hyndman, University of Toledo student double-majoring in Disability Studies and Business Administration. Photo credit: Kim E. Nielsen
“I’ve never been this excited about my education before,” my student said as we discussed his undergraduate B.A. degree in Disability Studies. Then he laughed at himself with astonishment. Because of his commitment to the topic, he also was working harder in his college coursework than he ever had before; and he’d never imagined that academic hard work and excitement could go together. This student, like all of our students, came to the University of Toledo’s Disability Studies Program seeking a future job (for himself) and justice (for all).
In the last three months The Family and I have twice piled into the car for eight-plus-hour (one way!) road trips to Washington, D.C. As family road trips, the journeys necessarily included junk food, some nausea, lots of laughter, sunburn, bickering, loud music, crowded hotel rooms, and unscheduled bathroom breaks. Unlike the usual family road trips, however, it’s been the season of Civic Road Trips.
On April 28, with thousands of others, we cheered for marriage equality before the steps of the Supreme Court building as the justices heard oral arguments. Road trip preparations had included learning more about the multiple state cases, interpretations of the Fourteenth Amendment’s equal protection clause, looking backwards to the 1968 case of Loving v. Virginiathat declared bans on interracial marriage unconstitutional, and arguing about the purpose of dissenting opinions. We fell out of the DC Metro carrying our homemade signs and looking like the out-of-towners that we are. We cried as the plaintiffs emerged from the Supreme Court at the end of the day, weary, optimistic, and surrounded by the love of family. Two elderly men from Nebraska, who had been in love for decades, asked if we would adopt them because their own extended family had rejected them. In the midst of the profound we mundanely argued over who had to stay awake in order to drive home.
“Do you know God’s real name?” asked the man. By appearances I judged him to be homeless; by the smell of his breath I judged him to be drunk. He stood next to me at the row of public library computer terminals. He’d started by telling me that it was his birthday, and that he was having a bad day. I like to think of myself as a compassionate person, and I’ve had bad days… So I wished him a happy birthday and expressed hope that his day would improve. My day was not going that great either. My presence at the library was due to a desire for a palliative in the form of a murder mystery (and in hope of avoiding less healthy alternatives).
Then the man asked me about God’s real name. He politely and sincerely told me that he also knew the real name of Jesus. He proceeded with a long narrative explanation about which I have no memory. I didn’t listen.
I wanted out of the conversation. I quickly ran through my internal catalogue of semi-graceful ways to do so. Nothing came to mind. There was no internal index card for what to do in this situation.
Indigenous Peoples Day is a reimagination of Columbus Day that "changes a celebration of colonialism into an opportunity to reveal historical truths about the genocide and oppression of indigenous peoples in the Americas, to organize against current injustices, and to celebrate indigenous resistance." In 2012, in honor of the holiday, we interviewed author Kim E. Nielsen, author of A Disability History of the United States, about the history of disability in North American Indigenous culture.
You said to me that the first chapter—about Indigenous peoples in North America before European colonization—was the hardest for you to write. Why was that?
I think that there were two reasons. One was that, as a historian, I'm used to dealing with traditional historical evidence, like letters and court records and maps and tombstones—the tangible things. And they don't really exist for the period prior to European arrival. So the evidence was all the kind of stuff I'm not used to dealing with. I had to look to archaeologists, linguists, contemporary oral culture, elder memory, elder knowledge. It was so different from the types of material I am used to that I didn't even know how to do the research at the beginning. So that was hard, but I also think it was the hardest because it was the furthest away from the reality we live in in 2012. If I argue that disability is impacted by culture—experiences, definitions, are impacted by culture. Of course, it's logical that it will be different in different time periods and different cultures, but the period prior to European arrival is so different from what I am accustomed to that I think it was both really important but also harder for me to understand.
In the first chapter, you say that there's a history of disability among Native Americans but that disability also really doesn't have a history among North American indigenous peoples before European arrival.
I thought it was really funny to do a history of something that in some ways didn't exist because the cultural understandings were so different. If you had no concept of disability as we understand it, how are you going to do that in a history? But I also think it's important in that we're showing that it does change over time, radically. I think that we consider disability to be a certain set of bodily, intellectual, emotional differences, and we think we know what that means. "I know it when I hear it, or see it, or whatever." And people have always had bodily differences, we've always had different skill sets. Some of those we don't pay any attention to, some are highly stigmatized, some are sort of "charming" and "cute." But how we understand disability today didn't exist. I'm coming to the conclusion that disability in most of those indigenous contexts meant someone who was lacking social connections and relationships of reciprocity, that was considered the difference that was most stigmatized. That was most remarked upon, that most put you outside of the larger community.
So people who were born without the full use of a limb, or somebody that was born with what we might now consider a psychological impairment to their fully functioning in our society might not necessarily be set aside as being different or as not being part of their community.
I think they would have been integrated far more into the community, and there would have been efforts to figure out what they could do, how they fit in. But also, simply, there was so much greater bodily differences and intellectual differences that were expected and simply part of the community and what people were. Part of that was simply medical and terrain differences and what it meant to live then. I live in Ohio and I have heating and air conditioning and that has an impact on my skin. And I have antibiotics to help me when I fell down yesterday and scraped my knee. When you live in cultures where that doesn't exist, it impacts your body. So there would simply be greater bodily differences—that would be the norm, that would be expected.
Can you talk about the ideas of integration of body, mind, and spirit? Do you think that affected how people affected these bodily differences.
The words that I kept running across were words like "unwell" or "unbalanced." In many indigenous cultures, they didn't separate out mind, body, spirit the way that Western cultures have, and so the idea was to have an overall wellness. But I could have significant bodily differences and cognitive differences and still be considered balanced and well. And the ideal goal would be to reach a state where one was balanced and well. My bodily differences or mental differences still could exist and be significant, but we would want to return to the wellness or achieve the wellness that may have been upset by a conflict or going near a tree that had been hit by lightning—something that was considered stigmatized or a sign of evil or a sign of an evil spirit or violating a taboo.
The members of the community would be more concerned, then, with helping someone achieve that balance than with "fixing" this thing that happened to them.
Yes—the ill health or the unease was not grounded in the body in the way that we tend to do this in Western medicine, but instead was dependent upon relationships with other people and with the world—the general overall balance of using my gifts, respecting others' gifts.
We have these ideas—these weird ideas of what Native Americas are and were like—that are shaped by popular culture. And I remember watching movies with offensive and unrealistic portrayals of Native Americans where they would speak with their hands. But people really did speak with their hands! And that was a real advantage, wasn't it?
It was! Not in the awkward gestures of old Hollywood movies by any means. But with a relatively sophisticated language. When we think of Indians with a capital "I" as one group, but there were something like 2,500 languages in North America. North America is a big place. And there were lots of different communities and they spoke different languages, and thus it was to their economic advantage, their social advantage, flirting advantage, to have a kind of shared signed language. Linguists have figured out that there was a commonly shared signed language across much of North America that people who spoke different verbal languages could use in trading, or whatever they needed to do. That meant that for anyone who had hearing loss or became deaf, people in their communities knew how to sign. Hearing loss or being deaf did not set you apart as it has historically in Western cultures.
Speaking to those differences between groups... Did you encounter differences that made you think that in certain groups people would have had it easier to integrate with differences in physical abilities?
Yes. I think in cultures that emphasize the warrior role, I think it would have been harder to have certain physical differences. Or cultures that may have been highly mobile, it would have been harder. In some ways, it varied from impairment to impairment, and then it varied by community. In cultures due to the terrain or due to spiritual expression—it's fascinating how many cultures there are.
In the book you discuss the Hopi, and how if you were living according to the Hopi way of life, then you should be perfect. You should have perfect health.
And there's a recognition that no one can do that, and that our bodies change over time, and that's simply the way it is. But yet, one should try to seek the ideal.
I really struggled in this chapter about not wanting to romanticize indigenous cultures too much, and to think about what ideas were versus the reality, and I think that fits in with the understandings of balance. Trying to recognize ideals, trying to recognize people's daily efforts to live up to those ideals. I think that there is in most indigenous cultures an effort to recognize people's skills. I may not be able to speak well, but if I can make baskets that hold water, that is something that can be of immense use to the community. In some ways disability was defined as lacking or still seeking out what those skills were.
European contact obviously disrupted life in numerous ways. Can you talk about how this might have created problems for people living with bodily differences?
I think it's impossible to exaggerate how much of an impact European diseases had. For one, the astronomically high death rate. In some places, a sixty to one hundred percent death rate. If you're left with ten percent, five percent, thirty percent of your community alive, you've disrupted all of those social relationships, those relationships of reciprocity and skill sets. So, I think that what we consider disability today had much more impact after European contact because of the limited communities, but also because people who survived things like small pox, chicken pox, some of the influenza waves, they were more likely to have significantly weakened bodies, to have a loss of sight that was not there before. And they wouldn't have had the community there to rely on that they had before.
At the beginning of the twentieth century, the stigmatization of mental illness and an increased governmental push to assimilate Native Americans into white culture combined harrowingly into the Hiawatha Asylum for Insane Indians. Can you talk about this institution?
The U.S. created a lot of institutions at the turn of the twentieth century. Native boarding schools were one, but then there was also a federal asylum for the "insane Indians," as it was called, in Canton, South Dakota. And just as at Indian boarding schools, people were highly discouraged from speaking their indigenous languages, "insanity" was defined in a way that was pretty complicated. That is, historians are beginning to figure out that people who steadfastly maintained their own traditional religious practices were more likely to be institutionalized as insane. People who resisted the authority of the Bureau of Indian Affairs agents, who frustrated the agents, were more likely to be interred as insane. People who maintained traditional gender roles within indigenous cultures were more likely to be determined insane. And institutionalization was a way to threaten and push people into European modes of thinking.
The Hiawatha Asylum was just a horrendous place to be as well, away from family, sometimes with few people who spoke your language. There was not good traditional food, it was a very unpleasant place. The cemetery was right near the asylum, as it was at other institutions and asylums across the United States, but for many indigenous cultures, being so close to one's dead was very taboo, and it was also taboo to not provide them with the proper burial practices so that they could go on their way in their lives happily. So being so close to that and not being able to do death properly was profoundly disturbing to the people institutionalized there.
There are records of European community members considering them to make "insane" noises that proved their insanity. Well, we look back at that and that may have been death mourning practices. They were trying to say goodbye to people properly.
The first book to cover the entirety of disability history, from pre-1492 to the present
Disability is not just the story of someone we love or the story of whom we may become; rather it is undoubtedly the story of our nation. Covering the entirety of US history from pre-1492 to the present,A Disability History of the United States is the first book to place the experiences of people with disabilities at the center of the American narrative. In many ways, it's a familiar telling. In other ways, however, it is a radical repositioning of US history. By doing so, the book casts new light on familiar stories, such as slavery and immigration, while breaking ground about the ties between nativism and oralism in the late nineteenth century and the role of ableism in the development of democracy.
A Disability History of the United States pulls from primary-source documents and social histories to retell American history through the eyes, words, and impressions of the people who lived it. As historian and disability scholar Nielsen argues, to understand disability history isn't to narrowly focus on a series of individual triumphs but rather to examine mass movements and pivotal daily events through the lens of varied experiences. Throughout the book, Nielsen deftly illustrates how concepts of disability have deeply shaped the American experience-from deciding who was allowed to immigrate to establishing labor laws and justifying slavery and gender discrimination. Included are absorbing-at times horrific-narratives of blinded slaves being thrown overboard and women being involuntarily sterilized, as well as triumphant accounts of disabled miners organizing strikes and disability rights activists picketing Washington.
Read a review at Inside Higher Ed. "By displacing the able-bodied, self-subsisting individual citizen as the basic unit (and implied beneficiary) of the American experience, she compels the reader to reconsider how we understand personal dignity, public life, and the common good."
About the Author
Kim E. Nielsen is professor of history and women’s studies at the University of Wisconsin-Green Bay. She has published multiple books and articles, advised several film documentaries, and won numerous academic and teaching awards, including a National Endowment for the Humanities Research Stipend and a Fulbright Scholar Award to the University of Iceland. Read her posts at Beacon Broadside.
In a New York Times interview, Dave Eggers mentions Malcolm Garcia: “there’s a writer named J. Malcolm Garcia who continually astounds me with his energy and empathy…I’ve been following him wherever he goes.”; New York Times
“One of the wonders of coming back to NOTES after such a long time is how “current” Baldwin is. That might sound like a cliché but in so many instances in our lives we learn that some clichés are built on things solid and familiar and timeless. “Journey to Atlanta” is but one of a hundred examples in NOTES. What also comes across, again, is how optimistic James Baldwin was about himself, his world, black people. Even when he describes the awfulness of being black in American, he presents us with an optimism that is sometimes like subtle background music, and sometimes like an insistent drumbeat. But through it all, with each word– perhaps as evidence of a man certain of his message – he never shouts.” From the new introduction by Edward P. Jones (Pulitzer Prize The Known World)
I'm afraid to turn on my television. Really, it terrifies me. This is not based on a fear of alien mind-melt, a fear of governmental snooping, or a fear of the little people who live inside the box (no flat screen at my house).
I fear clicking the remote control because I live in Wisconsin. Click: teachers are sucking the state dry. Click: public employees are lazy bums. Click: those guys who plow my street again and again and again (and now once more) are just selfish. Click: collective bargaining rights, the right to help shape our own workplaces, are an unnecessary privilege exploited by the spoiled. Click: it's just petty of people with disabilities to think transportation is necessary to get to work. Click: let's pay everyone as little as we get can get away with. Click: education, the essential core of any democratic society, the best grounding for healthy human beings, the cause to which I've dedicated most of my waking hours since I was five years old, doesn't have to be that good and really isn't very important. Mediocrity, indeed, is just fine.
Really, I'm terrified to turn on my television.
Fear, however, is not helping me out. Fear doesn't make for happy people, fear doesn't lead to quality and transformative teaching, fear hinders parenting, and fear certainly obstructs good policy decisions. For my college students, fear is not a place from which good learning happens. Fear is just no fun. And because I'm a historian, and it's secret requirement of the Ph.D. that I quote FDR (don't tell anyone that I told you), "We have nothing to fear but fear itself."
Courage, I tell myself, courage despite fear. Courage to spite fear. At 8 a.m. I will walk before a classroom of students. I will convey to them that they can transform their lives, their family's lives, and their world for the better—and that an education is their tool to do so. That is, of course, why they are in my classroom.
My students, it turns out, have plenty of courage. Most of my students are of the first generation in their families to attend college. They fear not finding employment. They fear that their parents will lose the family home. They fear the loss, or the continued absence of, healthcare. They fear sitting in the classroom while being haunted by memories of rape, of military combat, of things they can't identify. They fear each tuition bill. They fear, more than anything, the loss of hope. They, however, are brave enough to show up in my classroom. And they need, they need, they need me to have hope.
Professor Nielsen, one announces proudly, I got a B on my biology exam. Another student emails me after class, thank you for your concern and I'm sorry I walked out of class but too many of my friends have been raped and I can't even think about these issues. Professor, says a particularly quiet young man, I worked harder on this paper than I've ever worked before. Another student stops by my office… for no stated reason at all, for the third time. One boisterous student who calls me Dr. Kim is thrilled because she just spoke to a state legislator for the very first time. Another cries because her mom attempted suicide, and at nineteen she has to care for her younger brother. One amazed student tells me over and over again that she just can't believe how cool the suffragist Alice Paul was. Amidst all of this, they bolster their courage, they try to study, and they seek meaning.
This morning I woke dispirited, but I need courage for my students and I need courage for me.
Over the last several weeks I've encountered tens of thousands of courageous Wisconsinites. A 12 year old gave her first public speech with a bullhorn, before 5,000 people, in the state capitol rotunda. I love my teachers, she proclaimed, and they deserve more money—not less. Off duty police officers, with signs proclaiming "cops for labor," handed out water to the chanting protesters circling my state capitol as we thanked them for their presence. A wonderful, gruff retired steelworker told me that he didn't think he'd have lived this long without the basic protections his union provides. I laughed along with an animated high school senior, who refused to be cowed by a Republican legislator who threatened to call her truancy officer after she'd spent a day protesting peacefully. She stood proud, proud of herself and of her many teachers who had laughed and hugged while insisting that they deserved the basic human right of collective bargaining. A man who cleans public buildings shows up at our local rallies and sings to the protesters. Assembly Representative Peter Barca, who guaranteed his constituents continued access to him by moving his desk to the cold Wisconsin outdoors after Governor Scott Walker locked the capitol building despite a court order, makes me smile and cheer (send that man wool socks). And the Wisconsin 14 –those wonderful, courageous state Democratic senators who reportedly are braving the wilds of Illinois—are my heroes (especially Dave Hansen, my local Green Bay senator).
The labor rights of the people of Wisconsin, and of the rest of the nation, matter and their loss will impact all of us. My students and the quality of their education matter. The man who plows my street matters. The disability activists who staged a sit-in at Wisconsin Republican Party headquarters matter. Frankly, I and my colleagues matter. And it is unconscionably immoral to have the goal of paying people as little as one possibly can. Most importantly, however, the emerging labor alliance of nurses, social workers, snow plow drivers, fire fighters, college professors, electricians, janitors, ship builders, teachers, and police officers are pivotal to the future economic and social health of this nation. We are the future—not the Koch brothers and not Wisconsin's Governor Scott Walker.
The friendship of Anne Sullivan Macy and Helen Keller was not very glamorous. It lacked the men and clothing of the “Sex and the City” women. It lacked the dramatic guns and suicidal road trips of Thelma and Louise. It wasn't a fifty year slumber party of everlasting conversations, hugs, and secrets, and included no backstabbing cattiness and sexualized mud-fights. Somehow, however, the two women, remained friends— genuine friends— for nearly fifty years.
Having first written extensively on Helen Keller and now on Anne Sullivan Macy, I sometimes feel that I've lived two sides of the same story. After meeting in 1887, fourteen years apart in age, the two women quickly became the central persons in each other's lives. They became, slowly and eventually, dear friends.
Like all long-term friendships, perhaps, it was a confusing mess of a friendship. Their intense and multifaceted relationship contributed to the deterioration of the Macys' marriage— John Macy was not only Anne's husband but also Keller's editor and political mentor, and all three lived together in a house that was more Keller's than anyone else's. Even public perception of Keller and Macy was contradictory, haunted by the question of which woman enabled and created the other. Many credited the teacher with crafting her student's personhood; but as Keller grew to adulthood, others dismissed Macy as a low-status assistant.
To add to the mess, the two had all the foibles of human beings. Keller protectively held long and fierce grudges towards those who even hinted at criticizing Macy, and rarely (even long after Macy's death) said anything negative about her. Yet she could be a passive-aggressive snot, and after John and Anne Macy's separation wrote frequently about John's good looks, intelligence, and all around wonderfulness. Macy could be great fun, but her dourness, when it arrived, was intense and hard for Keller to understand. Macy admired but begrudged Keller her optimism. She also envied Keller's religious faith, but wanted nothing to do with it.
Most importantly, and what made the friendship work, was that they trusted one another. While the whole world assumed that Keller's deaf-blindness forced her to depend on Macy, my research suggests that the reverse more accurately characterizes their relationship of nearly fifty years. Macy leaned on Keller, juggling her uneasy combination of emotional vulnerability and a fierce desire for independence. Her lifelong struggle with chronic illness and depression was far more debilitating than Keller's deaf-blindness. Keller provided love, acceptance, daily assistance, an income, and a home. Their deep friendship, and Macy's willingness to allow herself to be dependent on Keller, gave meaning to Macy's life. Keller felt immense friendship, gratitude, and love for Macy, but she did not need her friend in the same way that Macy needed her.
Near the end of Macy's life Keller served as her personal aide. At one point in the 1930s any letters Macy sent had been fingerspelled (she called it dictating) to Keller who then typed them. In several of the letters Keller inserted comments in parentheses, disagreeing with or editorializing about Macy's words. My favorite example of this includes sniping between the two. In a slightly joking manner Macy complained about Keller's cheerfulness and health. While the food, drink, and heat had made the older woman ill, the younger woman had insides “made of cast iron fastened down with hoops of steel” that left her unaffected. Keller inserted her own parenthetical remarks, this time indicating that it was Macy's own *&%^ fault that she got sick because she drank too much water. Bicker, bicker, bicker!
The bickering, however, was part of the friendship; it was part of the trust. When Susan B. Anthony turned seventy, her dear friend Elizabeth Cady Stanton wrote, “If there is one part of my life that gives me more intense satisfaction than another, it is my friendship of more than forty years standing with Susan B. Anthony... Emerson says, ‘It is better to be a thorn in the side of your friend than his echo.’ If this adds weight and stability to friendship, then ours will endure forever, for we have indeed been thorns in the side of each other… I have had no peace for forty years, since the day we started together.” (Woman's Tribune, February 22, 1890).
Anne Macy and Helen Keller would have agreed. Disagreement and debate added energy to their friendship, as well as the weight and stability referred to by Stanton. For almost fifty years they lived out their friendship and their trust— as they shared a love of the intellectual life, adventured, bickered, and cared for one another. May all of us be so lucky.
About the Author
The author of three books, including two on Helen Keller and one on Anne Sullivan Macy, Kim E. Nielsen is a professor of history and women's studies at the University of Wisconsin-Green Bay.
I was so sick of Helen Keller. She'd begun to annoy me tremendously. After two previous books on the famous deaf-blind woman I swore I would never again write anything even remotely related to her. I’d had enough. I started a project far removed and told everyone in my professional circle about that far-removed project in order to commit myself to it.
Then I reread Anne Sullivan Macy's 1916 letters to Helen Keller. Macy had written them to her former student and then dear friend as she dealt with the illness that she thought would kill her. The letters reveal an introspective woman trying to understand her life. Vacillating between urgency and detachment, she reflected on pleasure, anger, complacency, and amazement. It struck me that her life embodied both contradictions and intensity: physical pain, emotional pain, isolation, friendship, joy, intellect, tenacity, success, and near constant self-doubt. Yet, as she thought about death, as she pondered her life, she took immense joy in the daily life of the Puerto Rican countryside where she was staying.
Though born in 1866, Macy's life dilemmas are surprisingly modern. How does a smart, passionate, introspective woman find love, intellectual satisfaction, economic stability, and friendship? How do any of us do so? She called herself a "badly constructed human being" who "blunder[ed] into life through the back door." As far as I can tell, that is how most of us do it.
As I reconsidered Macy, I became convinced that I, and nearly everyone else, had shortchanged the woman known only as the teacher of Helen Keller. I needed to do better-- to do justice to her and to provide a peephole into Keller and Macy's multifaceted, and often surprising, friendship. Our cultural memory mythologizes and simplifies Macy as a straightforward educational superhero. She deserves more.