Activism by Parents of Children with Disabilities and the 30th Anniversary of the ADA

This week in North Philly Notes, Allison Carey and Pamela Block, two of the coauthors of Allies and Obstacles, write about the accomplishments of parents in the disability rights movement as well as how disability activists are coping with COVID and Black Lives Matter. 

July 26th 2020 marks the 30th anniversary of the Americans with Disabilities Act (ADA). One of the nation’s most important and innovative civil rights acts, the ADA prohibits discrimination on the basis of disability across many spheres of public life, including in education, work, transportation, telecommunication, and the provision of public services. In doing so, it also mandates the provision of accessibility and accommodations to enable full participation in society by people with disabilities. Upon signing the ADA into law, President George H. W. Bush declared, “Let the shameful wall of exclusion finally come tumbling down.”

Allies and Obstacles_smThe anniversary of the ADA calls for reflection on where we were and where we are now. In our book, Allies and Obstacles: Disability Activism and Parents of Children with Disabilities, we detail the struggles of many disabled children and their families prior to the ADA, times when disabled people were systematically excluded from access to transportation, communication, education, and employment. We also document the ways that parent activists worked together with disability activists to bring the ADA into being. Thanks to these efforts, parents raising children in a post-ADA world experience a different landscape—one with far greater attention to access and that is more likely to recognize people with disabilities as full citizens worthy of inclusion.

Despite the incredible efforts of activists, however, we have a long way to go to actually achieve equity and inclusion. Parents are both allies and obstacles along this path. For example, in Olmstead v. L. C. (1999), the Supreme Court drew on the ADA in its finding that people with disabilities have a right to live and receive services in the community and to avoid unnecessary institutionalization. Many parents have fought for deinstitutionalization and to build community services, and they praised this decision. Other parents, though, fought to preserve institutions. Indeed, the language of Olmstead prohibiting “unnecessary” institutionalizations bows to the pressure placed by parents and professionals to leave intact the idea of necessary institutionalization as determined by professionals and parents/guardians with almost no avenues for disabled people to challenge their confinement. Data from 2011 indicated more than 89,000 people with intellectual and developmental disabilities and more than 178,000 people with psychiatric diagnoses still reside in large-scale, congregate settings (National Association of State Mental Health Directors, 2017; Scott, Lakin, and Larson, 2008).

New challenges also continue to arise, built on long-standing inequalities. The spread of the Coronavirus hit the disability community especially hard, exposing stark and persistent inequities. People with disabilities were infected with and died from COVID-19 at higher rates than the general population (Kennedy, Frieden, Dick-Mosher, & Curtis, 2020; Turk, Landes, Formica, & Goss 2020). In New York City, residents of group homes were more than five times more likely than the general population to develop COVID-19 and almost five times more likely to die from it (Hakim, 2020). Despite the high risk for disabled people, medical ethicists created guidelines for medical triage and technology access that restricted access to lifesaving measures to some categories of disabled people. Disability rights groups had to sue, drawing on the ADA, to defend themselves against medical discrimination. Throughout the pandemic, parents have fought for additional funding and clearer guidelines to ensure the delivery of support services in the community, including adequate testing and protective equipment to protect their loved ones and the support staff. But parents-led organizations are also among those that continue to run congregate care facilities and failed to protect people from the risks of congregate care including the rapid spread of disease.

Attention to police violence by Black Lives Matter activism put a spotlight on the fact that disabled black, indigenous and people of color are especially vulnerable to being hurt and killed by the police. Those who should be protecting  the rights of disabled citizens, instead use “unexpected” and “noncompliant” behavior to justify violence and pre-existing conditions to excuse fatality that occurs in the course of that violence. Here too we find parents on the front lines of these struggles.  Activist and blogger Kerima Çevik, for example, recognized years ago the dangers her son, a mixed race, autistic and nonverbal teenager, might face if he encountered the police. She works with a range of organizations to build community capacity to protect him and others. The work of minority activists, however, for too long was overlooked and de-prioritized by national parent-led disability organizations, which have majority white leadership and membership. These organization tended to sideline issues of concern to minority communities, such as police violence and the disproportionate labeling of minority youth in special education, and instead focus on an agenda seen as most politically palatable.

These examples highlight that, although the ADA opened many doors and created many protections, there is still much more to do both legislatively and in regards to resisting and changing societal prejudices and structural inequalities. Parents play a complex role in this struggle. They often ally with disabled activists to fight for inclusion and empowerment. However, continued support for congregate care and dismissing the intersectionality of race and disability contribute to some of the most pressing problems we face today.

Allison Carey, Pamela Block, and Richard Scotch are having a virtual panel to celebrate the ADA’s 30th anniversary on Aug 6th at  7pm. Visit: https://mi-ada.org/ for more information

What the American Irish faced in the nineteenth century

This week in North Philly Notes, Howard Lune, author of Transnational Nationalism and Collective Identity among the American Irish, writes about Irish immigrants in America.

Before I got too far into my early research on Irish nationalism, and before I had recognized the nature of transnational organizing efforts in supporting the long campaign for Irish independence, I was curious about the surprising success of the American Irish in public service fields such as police and firefighting squads. The answer to that puzzle turned out to center on fairly straightforward jobs-for-votes deals with the Democratic Party. But looking into widespread anti-Irish, anti-Catholic activism in the United States in the nineteenth century I was stuck by two patterns. The first was that the language and tactics of “othering” the Irish strongly resembled the tactics used to deny African Americans freedoms and citizenship rights at the same time. The second was that the same ideas have been resurrected with only slightly different language to attack other immigrant groups and African Americans under the present American regime. The continuing existence of discrimination is not surprising. I guess I just expected that we would develop more sophisticated forms of it.

The essential starting point for all of these organized acts of hostility is to present an unquestionable assumption that whenever we say “we” in America we all know that “we” are white, Christian men. Of course, in the 1800s, Christian meant Protestant while Catholic was part of the other, but they still preferred the term Christian. Few nativists ever argued that America was supposed to be white. They simply argued that the non-whites were “invading,” “taking over,” and “replacing” us. They never had to say “our kind” is supposed to dominate in all social, economic, and political institutions. They only had to say that “those people” would be infiltrating all of our spaces if we didn’t stop them. This business of the unexamined “we” sounded like a call to community, solidarity, and fellow-feeling while actually building walls, mobilizing violent mobs, and, especially, preventing others from voting.

Transitional Nationalism_smOther familiar patterns followed. “We” destroyed their schools and claimed that we couldn’t help them when they were so ignorant. We denied them jobs and claimed that we didn’t want such poor people bringing down the quality of life in our cities. We held up the example of the most successful of the whole (in this case, the wealthy Irish Protestants) in order to claim that the rest could obviously succeed too if they weren’t so lazy, or criminal, or whatever frightened us at the moment. We relegated them to slums and then said that no one who lived like that should be trusted with civic responsibility. We passed new laws about labor, vagrancy, and debt to target them, and then declared that they were mostly criminals and scofflaws. Our people raise families. Their people “breed.” And, in the more extreme publications that were commonly read but rarely acknowledged, we lamented the threat to the sexual purity of our white women if those people were allowed to run free.

In the 1800s we depicted the undesirable other as drunks. Today we describe them as probably using drugs.

These patterns, and so many others, demonstrate that the white, Protestant, male center of American life hasn’t really got any tangible complaint with any particular other group. If it did, then we would focus on different supposed attributes of each group pertinent to any given time period. Rather, it seems that the privileged core of the nation desperately fears having to share with others. This fear seems to be just as strong among those who have too much and those who have too little. Either way, the smallest excuse, the least supportable claim, and the most minor differences are enough for members of the culturally dominant group to band together to collectively degrade anyone and anything that could threaten the idea of their dominance. We are willing to allow anyone into college now, as long as they don’t get to be our bosses. We feign shock at each and every obvious example of racist violence but we hate it when people try to address “systemic” inequalities. We admit that the justice system isn’t always just, but we built it up that way in order to keep other people in their place, and we’re not planning to change that. We don’t hang signs that say “no Irish need apply” anymore, but try getting a corporate job interview without a white-sounding name. The Irish are accepted as white now, which almost implies that we have improved as a culture. Yet, with increasing globalization, we have no shortage of “other” people to casually disregard or openly hate. As a people, we are remarkably similar to our forebears, in the worst sense of the comparison.

Tipping toward possibility: an alternative framing of identity

This week in North Philly Notes, Milo Obourn, author of Disabled Futures, writes about the thorny issues of identity politics. 

A recent episode of NPR’s 1A featured a story about the great divide in political thinking that blamed, you’ll never guess, identity politics.

Bob Garfield, co-host of WNYC’s On the Media was arguing that the U.S. has an “identity obsessed culture” which “erodes the ideal of e pluribus unum” and inevitably leads to authoritarianism. Identity politics in this reading is factionalism that keeps us from working together, not the result of long histories of resistance to very targeted and explicit violences and discriminations. I could not help but think of the images that circulated after the 2017 Women’s March of a person I read as an older woman looking bored and holding a protest sign that reads, “I can’t believe I still have to protest this shit.” The image is now a poster, pin, and T-shirt you can buy on Amazon. Even the wry commentary on the never-ending cycle of the same political and social arguments is commodified into the never-ending cycle of capitalist incorporation of political and social arguments. How to get out?

Disabled Futures_022719_smThis question of “how to get out” underlies many of the theoretical moves I make in Disabled Futures: A Framework for Radical Inclusion. In this book, I explore the concept of “racialized disgender” as a way of framing identity that is not about a series of contemporary differences but rather a complex and nuanced framework of power in which ideologies of ability inform and construct our understanding of gender. A framework of power in which racism and constructions of dis/ability and its use to do violence to bodies are inextricable. A framework of power in which no one living in contemporary U.S. society is unaffected or unharmed by the ways race, gender, and dis/ability are assigned to our material selves. And finally, a framework in which no one couldn’t use their own experience to start to unpack how all oppression is, to quote Staceyann Chin, connected.

My first book Reconstituting Americans: Liberal Multiculturalism and Identity Difference in Post-1960s Literature was a way for me to deconstruct the fear of an “identity politics” that looms in popular culture as a force of divisiveness that causes those with historically marginalized identities to cling to our pain and/or is criticized for being empty politically correct nonsense—the kind of identity politics that turned “diversity and inclusion” into buzzwords translating into serving tacos in school cafeterias to represent Mexican culture. I wanted in this first book to think about how narrative and literary representation can help readers understand the ways American liberalism has eroded or put up barriers to our understanding of the politics surrounding identity oppression as offering us actual avenues for justice, knowledge, and ways to thrive in this world. It was a “how we got distracted” after all this work kind of book. Our world is full of these distractions—instead of wondering why things are so deeply inequitable we focus on Black people and Jewish people not getting along; instead of wondering how to make people feel more valued, safe, and included we argue about whether we should call it a “safe space” or a “brave space;” instead of asking why we have so many homeless trans youth and trans women of color being murdered every year; we focus on whether it’s okay to allow people in bathrooms and the struggles cis parents have understanding trans kids.

When I started writing Disabled Futures, I was ready to move beyond why we get stuck and look at models for how to frame our work toward greater justice in relation to inextricable intersections not just between marginalized identities but between systems of power that impact us all. What made me ready? Two things. First, I lost a child in infancy, I got very depressed, and the only thing that I could manage to do productively was work related to implementing active change based on knowledge from my academic research. Need a workshop on white privilege and how white people can process and own that? I was on it. Build a team to offer trainings on why respecting names and pronouns is important? I’m your trans person. The loss of this baby, Woolf, made any more critique without implementation feel like yet another distraction. I wanted a more potentially realizable (if still complex and very challenging) framework for understanding questions of identity and justice. The second and related thing was that I stepped in as Brockport’s Interim Chief Diversity Officer and found myself excited to be in a different relation to the immediate systems around me, to have my focus be big picture systems and the communities that inhabit them, as well as building connections with students outside of the classroom where I could mentor them in self advocacy that was not draining and distracting, but helpful to their ability to flourish in their academic life as well.

As an academic, I have been trained in critique. I have not been formally trained to present solutions. Disabled Futures is not a solution per se. But I felt at the point I was writing it that I needed the perspective of solution to survive and to thrive and that is the perspective I carried into my writing. I am committed in Disabled Futures to the idea that analyzing complex representations of race, gender, and dis/ability closely offers shifts in perspective that can keep us out of the cycle of distraction and argumentation, without devaluing the political and social knowledge that comes from living with and advocating from our social identity positions.

Years ago, when I discovered disability theory it gave me the seeds of some of the connections I make in this book. It let me talk about woundedness and impairment without shame or feeling like I had to isolate the harm of violence from the power of processing and living through it. To me this was applicable not only to disability as we understand it in our current moment but to the ways disability and ability form and inform all of our identities. It was a way to talk about whiteness and identity without fear that it would become white supremacy (the only choice according to the 1A interview with Garfield); a way of thinking about how dominant social identities work in complex collaboration with marginalization, not as its opposition, and not in ways that leave any of us unscathed by history. It was a way of connecting to myself and to years of academic study that I hadn’t known before and it became the platform for a theory of possibility. I hope that readers will leave this book tipping slightly more in the direction of possibility.

Considering gay economies of desire, intraracial romance, and sexual intimacy

This week in North Philly Notes, Cynthia Wu, author of Sticky Rice, writes about issues of race and sexuality, the subjects of her new book, a critical literary study.

Last month, Sinakhone Keodara, a Lao American actor, screenwriter, and entertainment executive, made headlines when he announced on Twitter his plans to file a class-action lawsuit against Grindr, a popular geosocial networking app for men interested in dating other men. The problem? The commonplace declarations that announce “no Asians,” which are allowed by moderators to remain on user profiles. Those who broadcast this restriction are mostly, but not exclusively, white.  Their ubiquity creates a hostile climate for Asian American men.

In a separate statement, Keodara clarified that white men should not “flatter [themselves]” to imagine that Asian American men need to convince them of their appeal. Rather, these outward expressions of racial loathing tap into a larger historical fetch of inequities leveled against people of Asian descent—from the Chinese Exclusion Act of 1882, the World War II Japanese American internment, and the Department of Homeland Security’s present-day profiling of Arab and South Asian Americans.

Keodara’s refusal to uphold white men’s primacy in the gay economy of desire resonates with the premises of Sticky Rice: A Politics of Intraracial Desire.  “Sticky rice” is a term coined by gay Asian American men to denote those amongst them who prefer intraracial romantic and sexual intimacies. As the logic goes, Asian American men who stick to themselves—like the types of rice grains favored by many Asian cuisines—disrupt presumptions about their aspirations to both whiteness and heteronormativity.

Sticky Rice_smMy book is not an ethnography of these men, however. It is a literary critical study that borrows from their language of intraracial bonding to revisit some of the most widely read selections in the canon of Asian American literature. In so doing, it revises an origin narrative about this body of work that has taken the heterosexuality of its seminal texts for granted.

John Okada’s 1957 novel, No-No Boy, presents a key example of how returning to old texts with new lenses produces a more nuanced story about the rise of an Asian American arts and culture movement. The novel, ignored upon its publication, was later championed by an all-male vanguard of separatist cultural producers in the early 1970s. These novelists, poets, and playwrights were known for their public condemnation of femininity and queerness. Okada’s work, they asserted, portrayed a shining model of politicized Asian American manhood in line with their stringent ideals.

No-No Boy, set in the period right after World War II, tells the story of an unlikely friendship between two Japanese American men, a disabled veteran and a nondisabled draft resister. The former holds the approval of the United States for his patriotic sacrifice to the nation, while the latter is condemned for his refusal to join the Army from within the confines of an internment camp.

The novel is often read as a treatise on the impossibility of choosing between a violent and—ultimately—fatal assimilation and a resistance that could not be realized in the midst of the Cold War. What has been overlooked in the literary criticism on No-No Boy is the erotic and sexual attraction between the main characters. I argue that the bond between the two men dissipates the either-or dichotomy that divided Japanese Americans during and after the war. Moreover, it calls into question the favorability of proximity to whiteness and heterosexuality alike.

That men of color could afford or would want to turn away from these trappings of legitimacy is often unthinkable. The lawsuit Keodara is threatening against Grindr, after all, is a reaction to the social acceptability of rejecting Asian American men on racially discriminatory grounds. We all know that a common response to rejection is more impassioned efforts at inclusion.

However, rather than compensatorily clinging to mainstream standards, the male characters in Asian American literature’s seminal texts show that we need a wholesale rethinking of love, intimacy, justice, and community. Their bonds with one another and their relentless intent to stick together become the basis on which we can imagine a different order of values.

Research Libraries, University Presses Oppose Trump’s Immigration Order

This week in North Philly Notes, we report the American Research Libraries and Association of American University Presses’ statement opposing President Trump’s Immigration Order

January 30, 2017—President Trump’s recent executive order temporarily barring entry into the US by individuals from seven countries is contrary to the values held by libraries and presses, and the Association of Research Libraries (ARL) and the Association of American University Presses (AAUP) stand unequivocally opposed to this immigration ban.

The order blocks some members of our communities as well as students, researchers, authors, faculty, and their families from entering or returning to the United States if they are currently abroad or leave the country, even if they hold the required visas. The ban will diminish the valuable contributions made to our institutions and to society by individuals from the affected countries. This discriminatory order will deeply impact the ability of our communities to foster dialogue, promote diversity, enrich understanding, advance the progress of intellectual discovery, and ensure preservation of our cultural heritage.

The work we do—particularly the books we publish and collect—illuminates the past and sheds new light on current conversations; informed by this work we believe that the rationale for the ban both ignores history and places assumptions ahead of facts. More importantly, this decision will greatly harm some of the world’s most vulnerable populations. The United States should not turn its back on refugees who are fleeing their war-torn homes and have already endured long, extensive screening procedures in the relocation process.

Finally, while temporary, the ban will have a long-term chilling effect on free academic inquiry. This order sends a clear message to researchers, scholars, authors, and students that the United States is not an open and welcoming place in which to live and study, conduct research, write, and hold or attend conferences and symposia. The ban will disrupt and undermine international academic collaboration in the sciences, the humanities, technology, and global health.

ARL and AAUP have longstanding histories of and commitments to diversity, inclusion, equity, and social justice. As social institutions, research libraries, archives, and university presses strive to be welcoming havens for all members of our communities and work hard to be inclusive in our hiring, collections, books and publications, services, and environments. The immigration ban in its current form is antithetical to notions of intellectual freedom and free inquiry fundamental to the missions of libraries and presses. By serving as inclusive communities, research libraries, archives, and university presses have deeply benefited from the contributions of students, faculty, staff, and scholars of all backgrounds and citizenships.

ARL and AAUP support all members of their communities and all students, researchers, authors, and faculty who are impacted by this executive order. The two associations urge President Trump to rescind this order and urge Congress to intervene on behalf of those affected by the immigration ban.

 

Something to be Proud Of

In this blog entry, Jamie Longazel, author of Undocumented Fearswrites about the pride, shame and legacy of his hometown of Hazleton, PA.

People talk a lot about being proud of where they’re from. Understandably so: It’s nice to feel connected, to be able to associate with a place and call it ‘home.’

I’m proud of where I’m from. I was born and raised in Hazleton – a hardscrabble, former coalmining town in Northeastern Pennsylvania. Like anywhere else, we have our own dialect (we say “youse” instead of “you all”), cuisine (you ought to try the cold pizza!), and ways of doing things that folks from other places probably wouldn’t understand.

Undocumented Fears_smMy book Undocumented Fears is about my hometown. And I can say with confidence now that pride is what drove me to write it. Part of me knew this all along. At first, though, it felt like my pride was either backwards or upside-down. What I now call pride actually felt like the opposite in the beginning. Shame, perhaps.

I was not proud of what my hometown did, you see. Certainly not in the way we traditionally think about pride and place.

Back in 2006, Hazleton was getting national attention when it passed the Illegal Immigration Relief Act. This was a local ordinance meant to punish landlords and businesses who rented to or hired undocumented immigrants. It also made English the official language of the city.

The ordinance came at a time when Hazleton was going through some significant changes. The decent-paying, long-term manufacturing jobs that kept the city afloat for several decades were on their way out. Warehouses, distribution centers, and a meatpacking plant – with lower paying, temporary, and sometimes dangerous jobs – were on their way in.

With these economic changes came demographic changes. Many Latina/o immigrants relocated to Hazleton over a very short period. Ninety-five percent White at the time of the 2000 census, the city was approximately 36% Latina/o by 2006.

Change can be confusing. Sociologists have long known that in moments like this, communities tend to come together and try to make sense of it all. We grasp for explanations. We seek to redefine who we are.

I get it. The poverty appears starker each time I visit, and it breaks my heart to see my city and its people go through that. This is why I have been so committed to figuring out what is actually going on.

When I think of home – especially since learning more about Hazleton’s history – I think of anthracite coal. In its ‘heyday,’ European immigrants toiled in mines in and around Hazleton facing notoriously low pay, disturbingly high rates of disease and death, and mine bosses who mastered the art of pitting ethnic groups against one another. To me this legacy is central to who we are.

In 2006, however, politicians started warning about undocumented immigrants who were committing crime and draining all the resources. Following their lead, people started blaming immigrants for their troubles.

Chalk it up to ignorance if you’d like, but also keep people’s yearning for collective identity in mind. I describe in the book how debates over the ordinance introduced degrading myths about who ‘they’ supposedly were (e.g., illegal, lazy, transient, noisy) – stereotypes that Latina/os troublingly have to endure in their day-to-day lives. At the same time, these myths provided the established, predominately white community with a contrast against which they could articulate a fresh conception of ‘us’ (e.g., law-abiding, hardworking, rooted, quiet).

What prevailed was an image of Hazleton as ‘Small Town, USA’ – which, like the idea that Hazleton is being ‘invaded’ by undocumented immigrants, just plainly is not true.

This is not to say that Hazleton and its people are undesirable or unworthy of this designation. The point is that ‘desirability’ as it is presented here relies on demonization and is fed to us from above. We’re pointing our fingers in the wrong direction. We’re being told who we are rather than deciding that for ourselves.

The form of industry changed, but in Hazleton, and across the country, for that matter, there is a wide gulf between the ‘haves’ and ‘have-nots.’ It is as if the coal barons of yesteryear are still around today. They do not want us to know that, of course, for if we did we might carry on the legacy of our mining ancestors and rally against low pay, brutal working conditions, and unfair treatment.

The ‘pride’ we often see in nostalgic yearnings for the ‘good ol’ days’ in ‘Small Town America’ in this sense isn’t pride at all. It’s detachment. It’s a decoy….It’s a dream.

I learned something about my city while writing this book, and I learned something about pride. Real pride requires authenticity. It requires confrontation. Pride is what keeps you from backing down when someone challenges your identity.

I show off my pride today by choosing the gritty reality of a post-industrial city over idealized and racist myths offered by opportunistic politicians.

Don’t get me wrong: I’d prefer prosperity. But we can’t just close our eyes and imagine a time when it supposedly existed. We ought to see ourselves as poor and working people who are part of an ongoing struggle in which immigrants are allies, not enemies.

If we want our poverty to end, we need to know who is actually perpetuating it. Then we need to rally together across our differences and demand changes in the way we are treated. That would be something to be proud of.

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