Examining care injustices

This week in North Philly Notes, Akemi Nishida, author of Just Care, writes about care as an analytical framework to understand the contemporary United States

During the COVID-19 pandemic, we were forced to recognize what was at the stake in the political debates on public healthcare programs such as Medicaid, the overstretched nature of the care labor force, and our own vulnerabilities. We also witnessed continuous fights for social justice including Black Lives Matter and Asian Americans against hate crimes, as well as the development of mutual aid networks to survive together.

Just Care suggests care as a lens to understand these phenomena—and incorporates care as not only an object of study but also an analytical framework. The book examines care injustices where people—whether they are situated as care workers, care receivers, or both—deteriorate under the name of care, when care is used as a mechanism to enhance the political economy and neglect the well-being of those situated as care workers and care receivers. It also addresses care justice, or just care, which occurs when people feel cared for affirmatively and when care is used as a foundation for more-just world building.

Just Care is based on research conducted at the request of disability communities to reveal how the public care services they receive are increasingly becoming money-centered, while they demand these services to be human-centered. Also, as a disabled person, my own experiences of receiving and providing care informed my work.

Just Care considers the experiences of care workers and care receivers under the Medicaid long-term care programs, queer disabled people who participate in community-based care collectives to interdependently support each other, and disabled and sick people of color who engage in bed activism to fight for social change from their bedspaces. By being in conversation with and witnessing care routines, the multiplicity of care became particularly noticeable—it is turned into a mechanism of social oppression and control while simultaneously being a tool with which marginalized communities activate, engage in, and sustain social justice fights.

Here are some key points from the book:

• When scholars and activists work to dismantle injustices surrounding care activities, they often approach them by looking into solely the labor exploitation care workers experience or the lack of adequate care recipients endure. Instead, Just Care engages in relational analysis to think through how these circumstances are intertwined and mutually witnessed and experienced, as care workers and receivers spend the majority of their daily lives side by side.
• An example of relational analysis is my tracing of the parallels between the histories of welfare programs for single mothers and families in need, (neo)colonialism and labor migration, and public healthcare programs like Medicaid, from the perspectives of critical race, transnational feminist, and disability studies.
• This analysis shows that in addition to differences in degrees and kinds of care people individually need, intersecting oppressions including racism, neocolonialism, patriarchy, and ableism shape who is currently pressured to take up caring responsibilities and how their own care needs or disabling conditions are quickly neglected. Such oppressions also make us think of disabled people exclusively as recipients of care and rarely acknowledge their caring contributions to society, let alone how the public healthcare services they receive are rarely adequate and can function to surveil them.
• Care services for disabled people are primarily planned by centering financial benefits for the care industrial complex and budget suppressions for governments and are not based on disabled people’s needs and preferences.
• This focus on financial benefits means that well-being of care workers and care recipients become secondary concerns. This leads them to experience mutual debilitation, rather than the presumed idea that one group thrives on the back of the other.
• Some care workers and care recipients under such debilitating public healthcare services develop interdependent relationships to help one another, in the middle of care-based oppression they experience, by transgressing the strict roles given to them.
• Disabled people have started care collectives to practice interdependence and based on their insistence that everyone needs care and can provide care. Engaging in interdependence in the middle of a society that values individualist independence is destined to be full of challenges. One challenge they faced is material (to physically meet all the care needs emerging within the group), and another is affective (to make sure conflicts within the group will not affect quality of care).
• Disabled and sick people engage in social change from their bedspaces, or “bed activism.” Bed activism entails critiquing of intersecting oppressions that manifest in bedspaces and offering visions for a more just world by centering the wisdom of sick and disabled people that emerges from their bedspaces.
• Bed activism can happen actively, for example, when bed dwellers engage in social change by writing a blog post. It also happens in inactive moments, for example, when they rest in their beds while going through depression, pain, or fatigue. Even those moments inform bed activists about their relationships with their bodies and minds or the social conditions that restrict them to their beds.

We all need care and are capable of caring for others in various ways. When we start from this foundational understanding, how can we each engage in just care or more-just world making through care? Just Care points the way to answering this question.

Caring Beside: Metaphors of Solidarity at the Bedside

This week in North Philly Notes, James Kyung-Jin Lee, author of Pedagogies of Woundedness, writes about “the horizontal ethics of care and politics of resistance” as well as the power that can come from the person lying on the bed.

            

In the epilogue of Pedagogies of Woundedness, I cite the opening scene of Johanna Hedva’s “Sick Woman Theory,” in which they describe listening to the sounds of a 2014 Black Lives Matter protest taking place outside their apartment, while Hedva was consigned to a bed because of a chronic illness: “Attached to the bed, I rose up my sick woman fist, in solidarity.” They then wonder what role ill/disabled people might play in revolutionary activity: “How do you throw a brick through the window of a bank if you can’t get out of bed?” Such a question resonates with a corresponding image that Leah Lakshmi Piepzna-Samarasinha conjures in her essay “Crip Superpowers,” that implores her readers and fellow activists to imagine, “We can community-organize flat on our ass in bed—as what the movement needs most.”

The horizontal body in space and time is the prevailing image of the patient consigned to the hospital bed that animates so much of the crucible of experience that animates physician memoirs, the contrast between the standing, able-bodied doctor hovering over, caring, surveilling, and enacting on the prone one in need of care and thus submitting to such diagnostic colonization. It is this asymmetry of power exemplified in bodily position that motivates both Hedva and Piepzna-Samarasinha to see the bedridden Asian American sick woman as nonetheless agentive. Here, I also take to heart Mel Chen’s meditation on Piepzna-Samarasinha’s insistence on a politics enabled “flat on our ass in bed” by their subtle but trenchant critique of the most widely used phrase to demonstrate solidarity with a cause or community or condition: “The grammar of ableist liberatory fervor is succinctly captured, for instance, in the widespread use today of declamatory campaigns that urge one to metaphorically ‘stand with’ various populations or politicians. Such a metaphor is constructed on the figurative imagining of a literal standing. The question becomes what might it mean to ‘stand with’ a figural group, when standing for wheelchair users, or those chronically ill ‘flat on our ass in bed,’ cannot readily invite such ‘politically aligned’ embodied action.” At the time of this writing, my social media feed is filled with posts that stand with the people of Ukraine, stand with LGBTQ+ kids in Florida and trans children in Texas, and of course all through the pandemic we were ostensibly standing with health care workers toiling in the desperate days and weeks of the worst of the COVID pandemic. I suppose that the lack of shortage of people standing with others is a small testament that wounded, vulnerable people receive some modicum of compassion that isn’t tethered to market forces or transactional expectation.

But Chen’s, Hedva’s, and Piepzna-Samarasinha’s insistence on a horizontal ethics of care and politics of resistance have hit home in ways that exceeded my imagination once the final draft of Pedagogies of Woundedness was locked. The following is a story which I have permission to disclose: a year ago, our older teenage daughter attempted suicide and in doing so revealed that she had been suffering from severe mental illness and associated trauma for years, unbeknownst to me and her mom. What followed was a long flight of various treatments, both outpatient and residential, and our family’s baptism into the world of mental health care. There have been and continue to be moments of crisis that punctuate periods of relative mental and emotional stability, and some rare moments of happiness for my daughter, and for the other members of the family. Early on, I clung to a restitution narrative, but we’re late into this story and I recognize now that my daughter is living a different genre. Early on, I stood over her bed desperately wishing she could join me, despairing that the aggressivity of her depression prevented her from even remaining conscious for hours at a time. Over time, I came to understand that standing with my daughter when she couldn’t get out of bed wasn’t all that much different from the physician’s diagnostic colonization of his patient.

So I’ve tried to shift my body and my metaphor to align with where my daughter is on any given day. On really tough days, as she lies in bed, I’ll sometimes lie on the floor and listen to the quiet sounds of her breathing. At moments when she is able to sit at her desk and is willing to let me into her space, I’ll pull up a chair: sometimes we sit face to face and at others side by side, as if we’re facing the world together. Stories of illness and disability, and the politics and ethics that emanate from these stories, the power that can come from the person lying on the bed, have taught me that there is and must be always more room to imagine solidarity with the vulnerable. Nowadays, I will only stand with people, like my daughter, if they want to stand, and if they give me permission to rise with them, if they let me take their hand into mine.

The (real) cost of living with dignity

This week in North Philly Notes, Lisa Iezzoni, author of Making Their Days Happen, writes about the personal and political implications of home-based supportive services and the workforce available to meet this need.

Although it sounds like hyperbole, Nelita kept my friend Michael alive. Michael is completely paralyzed below his neck from primary progressive multiple sclerosis (MS), but he  has a happy life. Because of disability, he had to retire from being a physics professor and lives alone, in a modest home adapted for disability accessibility. Nevertheless, when we met in 2009, his power wheelchair had over 2,500 miles on its odometer, and if the weather cooperated, he spent his days rolling about his community, doing errands, auditing classes at the local university, and taking the train into nearby New York City to visit museums, attend concerts, or ride through Central Park. Michael couldn’t do any of this without Nelita.

Michael needs support for all activities of daily living (ADLs)—feeding, bathing, toileting, dressing, and moving in and out of his wheelchair—and Nelita was his primary personal care assistant (PCA). She arrived every morning at 6:00 am; got him out of bed using his automated, ceiling-mounted lift; assisted him with toileting, showering, and shaving; dressed him; got him set up in his power wheelchair, with its complicated electronics; made and fed him breakfast; and tidied up his bathroom, bedroom, and kitchen before rushing off, with kind parting words, to her second job (a Haitian immigrant, Nelita always juggled two or three jobs). Nelita worked for one of those franchise home-based personal care agencies with a warm and fuzzy name that have sprung up nationwide, and she received a fraction of the hourly fee Michael paid them. When, after several years, Michael’s MS progressed and he needed more PCA hours, he could no longer afford the agency. He finally enrolled in a tightly managed care insurance plan that covered his PCAs, and Nelita changed jobs to stay with him. She—and a team of other PCAs—not only keep Michael alive but support his ability to live his life as he wishes, with dignity.

Nelita, in turn, found her work with Michael personally rewarding. She knew that Michael valued her immeasurably and could not get by without her support. But personal assistance services jobs typically have low wages, meager benefits, scant societal respect, and are viewed as low skilled “women’s work.” However, providing personal care assistance is physically and emotionally demanding and requires navigation of complex and intimate relationships with consumers. It also demands keen observational skills and judgment. PCAs can identify consumers’ new health problems early, thus sometime preventing worsening disease and hospitalization. Nevertheless, by standard metrics, providing personal care assistance—which keeps people with significant disability alive and living with dignity—engenders little dignity for its practitioners, who are predominantly women, people of color, and often immigrants. Immigrants especially risk exploitation from private-pay consumers desperate for ADL supports but unwilling or unable to pay even the routine low wages.

Today, about 17 million Americans living in their homes need assistance with daily activities because of disability. These numbers will grow as baby boomers age. Most people receive assistance from family member or friends. However, as for Michael, when no one is available to provide this support, paid PCAs fill the need. In 2019, approximately 2.3 million workers provided home-based care, broadly defined, and job positions are expected to climb substantially in coming years. But the PCA workforce, with its low wages and high turnover (exacerbated by the COVID-19 pandemic), cannot keep pace with increasing demand.

Much has been written about the impending gap between the need for home-based supportive services and the workforce available to meet this need. Over the last two decades, blue ribbon commissions of experts have convened to discuss this and other imminent crises of long-term services and supports in America. Yet something has been missing from their copious reports and pronouncements: the voices of PCA consumers with significant disability and of PCAs. Also missing were detailed descriptions of exactly how consumers and PCAs approach their intimate interactions in consumers’ bedrooms, bathrooms, kitchens, and behind closed doors, and what dignity looks like day-to-day to consumers and to workers.

A reality in the U.S. is that money is the starting point for achieving the dignity objectives for both PCA consumers and PCAs. Many Americans erroneously believe that Medicare—federal health insurance for older people and former workers under age 65 with disability—pays for in-home ADL supports. It does not, except in narrow circumstances. Many consumers can only obtain the services they need by getting Medicaid (the joint federal-state health insurance program for low-income people), a difficult process with benefits varying widely across states. Even in more generous states, Medicaid budget limitations and complex policies mean that today about 800,000 people are on waiting lists to receive home-based services under Medicaid. President Biden’s Build Back Better plan—passed by the U.S. House of Representatives but currently stalled in the Senate—includes funding to provide in-home supports to older people and people with disability and to increase wages of home care workers. Build Back Better focuses on Medicaid-funded home-based supports, so it will not assist everyone needing these services, but it is a start.

To introduce the missing voices mentioned above, Making Their Days Happen uses interviews of PCA consumers and PCAs to tell their stories, putting these essential ADL support activities into current health and labor policy contexts. It also provides advice for people who might need personal care assistance services for themselves or a family member. Like any intensely intimate human interactions, providing and receiving ADL support can be interpersonally complex. Although PCA consumers and PCAs approach these services from different perspectives, both the benefits and challenges of paid personal care assistance distill down to a single word, dignity. For PCA consumers with significant disability, despite their physical vulnerabilities, dignity means having their wishes respected, all the way from how mundane ADL tasks are performed to supporting their preferences for how they live their lives, participate in community activities, and maximize their quality of life. For PCAs, dignity means societal recognition and respect for the crucial work they perform, plus a living wage, paid sick leave and vacations, safe working conditions, and the training and skills advancement to build a career.

Celebrating Hispanic Heritage Month

This week in North Philly Notes, we showcase titles for Hispanic Heritage Month. View our full list of Latino/a Studies and Latin American/Caribbean Studies titles. (Also of interest Studies in Latin American and Caribbean Music series)

Accessible Citizenships shows how disability provides a new perspective on our understanding of the nation and the citizen.

Afro-Caribbean Religions provides a comprehensive introduction to the Caribbean’s African-based religions.

Arsenio Rodríguez and the Transnational Flows of Latin Popular Music recounts the life and times of one of Cuba’s most important musicians.

The Brazilian Sound is an encyclopedic survey of Brazilian popular music—now updated and expanded.

Caribbean Currents is the classic introduction to the Caribbean’s popular music brought up to date.

Chilean New Song provides an examination of the Chilean New Song movement as an organic part of the struggles for progressive social change, deeper democracy, and social justice in Chile in the 1960s and early 1970s.

The Coolie Speaks offers a remarkable examination of bondage in Cuba that probes questions of slavery, freedom, and race.

Daily Labors examines the vulnerabilities, discrimination, and exploitation—as well as the sense of belonging and community—that day laborers experience on an NYC street corner.

Democratizing Urban Development shows how community organizations fight to prevent displacement and secure affordable housing across cities in the U.S. and Brazil.

Dominican Baseball, from the author of Sugarball, looks at the important and contested relationship between Major League Baseball and Dominican player development.

Fernando Ortiz on Music features selections from the influential Fernando Ortiz’s publications on Afro-diasporic music and dance—now available in English.

From Puerto Rico to Philadelphia is a history of Puerto Rican immigration to Philadelphia.

Globalizing the Caribbean, now in Paperback, illustrates how global capitalism finds new ways to mutate and grow in the Caribbean.

How Did You Get to Be Mexican? is a readable account of a life spent in the borderlands between racial identity.

The International Monetary Fund and Latin America chronicles the sometimes questionable relationship between the International Monetary Fund and Latin America from 1944 to the present.

Latino Mayors is the first book to examine the rise of Latino mayors in the United States.

Latinos and the U.S. Political System is an analysis of American politics from the vantage point of the Latino political condition.

Latinx Environmentalisms puts the environmental humanities into dialogue with Latinx literary and cultural studies.

Liberation Theology asks: How does the church function in Latin America on an everyday, practical, and political level?

Merengue, now available as an ebook, is a fascinating examination of the social history of merengue dance music and its importance as a social and cultural symbol.

Migration and Mortality documents and denounces the violent impacts of restrictive migration policies in the Americas, linking this institutional violence to broader forces of racial capitalism.

Música Norteña is the first history of the music that binds together Mexican immigrant communities.

New Immigrants, Old Unions provides a case study of a successful effort to unionize undocumented immigrant workers.

The New York Young Lords and the Struggle for Liberation is a landmark history of the New York Young Lords, and what their activism tells us about contemporary Latino/a politics.

Not from Here, Not from There/No Soy de Aquí ni de Allá is a lively autobiography by Nelson Díaz, a community activist, judge, and public advocate who blazed a trail for Latinos in Philadelphia.

Revolution Around the Corner is the first book-length story of the radical social movement, the Puerto Rican Socialist Party.

Selecting Women, Electing Women offers an analytic framework to show how the process of candidate selection often limits the participation of women in various Latin American countries.

The Sorcery of Color is an examination of how racial and gender hierarchies are intertwined in Brazil.

Sounding Salsa takes readers inside New York City’s vibrant salsa scene.

Terrorizing Latina/o Immigrants is a comprehensive analysis of changes in immigration policy, politics, and enforcement since 9/11.

Women’s Empowerment and Disempowerment in Brazil explains what the rise and fall of Brazil’s first and only female president can teach us about women’s empowerment.

What will work eventually look like?

This week in North Philly Notes, we focus on our new and forthcoming Labor Studies titles in honor of Labor Day.

 Workforce Development 

The Many Futures of Work reframes the conversation about contemporary workplace experience by providing both “top down” and “bottom up” analyses.  

America in the 20^thcentury

Becoming Entitled examines Americans’ shift in thinking about government social insurance programs during the Great Depression.

Communists and Community shows what role Communists played in the advancement of social democracy. 

Elaine Black Yoneda (forthcoming) presents a critical biography of the Jewish labor activist and feminist pioneer. 

Industrial histories

“A Road to Peace and Freedom” recounts the history of the International Workers Order.

From Collective Bargaining to Collective Begging analyzes the expansion and restriction of collective bargaining rights for public employees.

Social justice and social welfare 

Motherlands challenges preconceived notions of the states that support working mothers. 

Labor economics 

Daily Labors and its examination of Black and Latino day laborers’ experience on an NYC street corner.

Sociology of work 

A Collective Pursuit argues that teachers’ unions are working in community to reinvigorate the collective pursuit of reforms beneficial to both educators and public education.

Policing in Natural Disasters shows how disaster work impacts law enforcement officers and first responders.

Making Their Days Happen (forthcoming) explores the complexities of the interpersonal dynamics and policy implications affecting personal assistance service consumers and providers.

For all of our Labor Studies

Happy Pride!

This week in North Philly Notes, we celebrate Pride Month by showcasing a handful of our recent LGBTQ+ titles. You can check out all of our Sexuality Studies series titles here and all of our Sexuality Studies/Sexual Identity titles here.

Disruptive Situations: Fractal Orientalism and Queer Strategies in Beirut, by Ghassan Moussawi, provides the first comprehensive study to employ the lens of queer lives in the Arab World to understand everyday life disruptions, conflicts, and violence.

Disruptive Situations challenges representations of contemporary Beirut as an exceptional space for LGBTQ people by highlighting everyday life in a city where violence is the norm. Moussawi’s intrepid ethnography features the voices of women, gay men, and genderqueer persons in Beirut to examine how queer individuals negotiate life in this uncertain region. He argues that the daily survival strategies in Beirut are queer—and not only enacted by LGBTQ people—since Beirutis are living amidst an already queer situation of ongoing precarity.

Action = Vie: A History of AIDS Activism and Gay Politics in France, by Christophe Broqua, chronicles the history and accomplishments of Act Up-Paris.

Act Up–Paris became one of the most notable protest groups in France in the mid-1990s. Founded in 1989, and following the New York model, it became a confrontational voice representing the interests of those affected by HIV through openly political activism. Action = Vie, the English-language translation of Christophe Broqua’s study of the grassroots activist branch, explains the reasons for the French group’s success and sheds light on Act Up’s defining features—such as its unique articulation between AIDS and gay activism. Featuring numerous accounts by witnesses and participants, Broqua traces the history of Act Up–Paris and shows how thousands of gay men and women confronted the AIDS epidemic by mobilizing with public actions.

Disabled Futures: A Framework for Radical Inclusion, by Milo W. Obourn, offers a new avenue for understanding race, gender, and disability as mutually constitutive through an analysis of literature and films.

Disabled Futures makes an important intervention in disability studies by taking an intersectional approach to race, gender, and disability. Milo Obourn reads disability studies, gender and sexuality studies, and critical race studies to develop a framework for addressing inequity. They theorize the concept of “racialized disgender”—to describe the ways in which racialization and gendering are social processes with disabling effects—thereby offering a new avenue for understanding race, gender, and disability as mutually constitutive.

Public City/Public Sex: Homosexuality and Prostitution, and Urban Culture in Nineteenth-Century Paris, by Andrew Israel Ross, shows how female prostitutes and men who sought sex with other men shaped the history and emergence of modern Paris in the nineteenth century.

Andrew Israel Ross’s illuminating study, Public City/Public Sex, chronicles the tension between the embourgeoisement and democratization of urban culture in nineteenth-century Paris and the commercialization and commodification of a public sexual culture, the emergence of new sex districts, as well as the development of gay and lesbian subcultures. Public City/Public Sex examines how the notion that male sexual desire required suitable outlets shaped urban policing and development. Ross traces the struggle to control sex in public and argues that it was the very effort to police the city that created new opportunities for women who sold sex and men who sought sex with other men. Placing public sex at the center of urban history, Ross shows how those who used public spaces played a central role in defining the way the city was understood.

And Coming Out this month

Q & A: Voices from Queer Asian North America, edited by Martin F. Manalansan IV, Alice Y. Hom, and Kale Bantigue Fajardo, a vibrant array of scholarly and personal essays, poetry, and visual art that broaden ideas and experiences about contemporary LGBTQ Asian North America.

This new edition of Q & A is neither a sequel nor an update, but an entirely new work borne out of the progressive political and cultural advances of the queer experiences of Asian North American communities. The artists, activists, community organizers, creative writers, poets, scholars, and visual artists that contribute to this exciting new volume make visible the complicated intertwining of sexuality with race, class, gender, and ethnicity. Sections address activism, radicalism, and social justice; transformations in the meaning of Asian-ness and queerness in various mass media issues of queerness in relation to settler colonialism and diaspora; and issues of bodies, health, disability, gender transitions, death, healing, and resilience.

The visual art, autobiographical writings, poetry, scholarly essays, meditations, and analyses of histories and popular culture in the new Q & A gesture to enduring everyday racial-gender-sexual experiences of mis-recognition, micro-aggressions, loss, and trauma when racialized Asian bodies are questioned, pathologized, marginalized, or violated. This anthology seeks to expand the idea of Asian and American in LGBTQ studies.

Celebrating National Coming Out Week

This week in North Philly Notes, we proudly present ten of our LGBTQ+ titles!

Action = Vie: A History of AIDS Activism and Gay Politics in France, by Christophe Broqua
Chronicling the history and accomplishments of Act Up-Paris

Civic Intimacies: Black Queer Improvisations on Citizenship, by Niels van Doorn
Mapping the political and personal stakes of Black queer lives in Baltimore

Disruptive Situations: Fractal Orientalism and Queer Strategies in Beirut, by Ghassan Moussawi
The first comprehensive study to employ the lens of queer lives in the Arab World to understand everyday life disruptions, conflicts, and violence

In a Queer Voice: Journeys of Resilience from Adolescence to Adulthood, by Michael Sadowski
In-depth interviews over six years show us how LGBTQ youth survive adolescence, thrive as adults, and find a voice that is uniquely their own

Just Queer Folks: Gender and Sexuality in Rural America, by Colin R. Johnson
Uncovering the history of gender and sexual nonconformity in rural America, with a focus on the Midwest during the first half of the twentieth century

Officially Gay: The Political Construction of Sexuality by the U.S. Military, by Gary L. Lehring
How the military defined homosexuality and the ways that shaped the gay and lesbian identity and movements

Out in the Union: A Labor History of Queer America, by Miriam Frank
A groundbreaking history of queer activists who advanced the causes of labor organizing and LGBT rights

Public City/Public Sex: Homosexuality, Prostitution, and Urban Culture in Nineteenth-Century Paris, by Andrew Israel Ross
How female prostitutes and men who sought sex with other men shaped the history and emergence of modern Paris in the nineteenth century

Sticky Rice: A Politics of Intraracial Desire, by Cynthia Wu
Creating a queer genealogy of Asian American literary criticism

Vulnerable Constitutions: Queerness, Disability, and the Remaking of American Manhood, by Cynthia Barounis
Presents an alternative queer-crip genealogy of American masculinity in the twentieth century

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 26^th 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.”

The 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. 

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?

This 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.

Celebrating Pride

This week in North Philly Notes, we celebrate Pride month with a dozen Temple University Press’s LGBTQ titles.

City of Sisterly and Brotherly Loves: Lesbian and Gay Philadelphia, 1945-1972, by Marc Stein

Marc Stein’s City of Sisterly and Brotherly Loves is refreshing for at least two reasons: it centers on a city that is not generally associated with a vibrant gay and lesbian culture, and it shows that a community was forming long before the Stonewall rebellion. In this lively and well received book, Marc Stein brings to life the neighborhood bars and clubs where people gathered and the political issues that rallied the community. He reminds us that Philadelphians were leaders in the national gay and lesbian movement and, in doing so, suggests that New York and San Francisco have for too long obscured the contributions of other cities to gay culture.

Civic Intimacies: Black Queer Improvisations on Citizenship, by Niels van Doorn

Because members of the Black queer community often exist outside conventional civic institutions, they must explore alternative intimacies to experience a sense of belonging. Civic Intimacies examines how—and to what extent—these different forms of intimacy catalyze the values, aspirations, and collective flourishing of Black queer denizens of Baltimore. Niels van Doorn draws on eighteen months of immersive ethnographic fieldwork for his innovative cross-disciplinary analysis of contemporary debates in political and cultural theory.

Deregulating Desire: Flight Attendant Activism, Family Politics, and Workplace Justice, by Ryan Patrick Murphy

In 1975, National Airlines was shut down for 127 days when flight attendants went on strike to protest long hours and low pay. Activists at National and many other U.S. airlines sought to win political power and material resources for people who live beyond the boundary of the traditional family. In Deregulating Desire, Ryan Patrick Murphy, a former flight attendant himself, chronicles the efforts of single women, unmarried parents, lesbians and gay men, as well as same-sex couples to make the airline industry a crucible for social change in the decades after 1970.

From Identity to Politics: The Lesbian and Gay Movements in the United States, by Craig A. Rimmerman

Liberal democracy has provided a certain degree of lesbian and gay rights. But those rights, as we now know, are not unlimited, and they continue to be the focus of efforts by lesbian and gay movements in the United States to promote social change. In this compelling critique, Craig Rimmerman looks at the past, present, and future of the movements to analyze whether it is possible for them to link identity concerns with a progressive coalition for political, social, and gender change, one that take into account race, class, and gender inequalities. Enriched by eight years of interviews in Washington, D.C. and New York City, and by the author’s experience as a Capitol Hill staffer, From Identity to Politics will provoke discussion in classrooms and caucus rooms across the United States.

The Hirschfeld Archives: Violence, Death, and Modern Queer Culture, by Heike Bauer

Influential sexologist and activist Magnus Hirschfeld founded Berlin’s Institute of Sexual Sciences in 1919 as a home and workplace to study homosexual rights activism and support transgender people. It was destroyed by the Nazis in 1933. This episode in history prompted Heike Bauer to ask, Is violence an intrinsic part of modern queer culture? The Hirschfeld Archives answers this critical question by examining the violence that shaped queer existence in the first part of the twentieth century.

In a Queer Voice: Journeys of Resilience from Adolescence to Adulthood, by Michael Sadowski

Adolescence is a difficult time, but it can be particularly stressful for lesbian, gay, bisexual, transgender, and queer-identifying youth. In order to avoid harassment and rejection, many LGBTQ teens hide their identities from their families, peers, and even themselves. Educator Michael Sadowski deftly brings the voices of LGBTQ youth out into the open in his poignant and important book, In a Queer Voice. Drawing on two waves of interviews conducted six years apart, Sadowski chronicles how queer youth, who were often “silenced” in school and elsewhere, now can approach adulthood with a strong, queer voice.

Just Queer Folks: Gender and Sexuality in Rural America, by Colin R. Johnson

Most studies of lesbian and gay history focus on urban environments. Yet gender and sexual diversity were anything but rare in nonmetropolitan areas in the first half of the twentieth century. Just Queer Folks explores the seldom-discussed history of same-sex intimacy and gender nonconformity in rural and small-town America during a period when the now familiar concepts of heterosexuality and homosexuality were just beginning to take shape. Eschewing the notion that identity is always the best measure of what can be known about gender and sexuality, Colin R. Johnson argues instead for a queer historicist approach. In so doing, he uncovers a startlingly unruly rural past in which small-town eccentrics, “mannish” farm women, and cross-dressing Civilian Conservation Corps enrollees were often just queer folks so far as their neighbors were concerned. Written with wit and verve, Just Queer Folks upsets a whole host of contemporary commonplaces, including the notion that queer history is always urban history.

Modern American Queer History, edited by Allida M. Black

In the twentieth century, countless Americans claimed gay, lesbian, bisexual, and transgender identities, forming a movement to secure social as well as political equality. This collection of essays considers the history as well as the historiography of the queer identities and struggles that developed in the United States in the midst of widespread upheaval and change.

Officially Gay: The Political Construction of Sexuality by the U.S. Military, by Gary L. Lehring

Officially Gay follows the military’s century-long attempt to identify and exclude gays and lesbians. It traces how the military historically constructed definitions of homosexual identity relying upon religious, medical, and psychological discourses that defined homosexuals as evil, degenerate, and unstable, making their risk to national security obvious, and mandating their exclusion from the Armed Services.

Out in the Union: A Labor History of Queer America, by Miriam Frank

Out in the Union tells the continuous story of queer American workers from the mid-1960s through 2013. Miriam Frank shrewdly chronicles the evolution of labor politics with queer activism and identity formation, showing how unions began affirming the rights of lesbian, gay, bisexual, and transgender workers in the 1970s and 1980s. She documents coming out on the job and in the union as well as issues of discrimination and harassment, and the creation of alliances between unions and LGBT communities.

Sticky Rice: A Politics of Intraracial Desire, by Cynthia Wu

Cynthia Wu’s provocative Sticky Rice examines representations of same-sex desires and intraracial intimacies in some of the most widely read pieces of Asian American literature. Analyzing canonical works such as John Okada’s No-No Boy, Monique Truong’s The Book of Salt, H. T. Tsiang’s And China Has Hands, and Lois-Ann Yamanaka’s Blu’s Hanging, as well as Philip Kan Gotanda’s play, Yankee Dawg You Die, Wu considers how male relationships in these texts blur the boundaries among the homosocial, the homoerotic, and the homosexual in ways that lie beyond our concepts of modern gay identity.

Vulnerable Constitutions: Queerness, Disability, and the Remaking of American Manhood, by Cynthia Barounis

Amputation need not always signify castration; indeed, in Jack London’s fiction, losing a limb becomes part of a process through which queerly gendered men become properly masculinized. In her astute book, Vulnerable Constitutions, Cynthia Barounis explores the way American writers have fashioned alternative—even resistant—epistemologies of queerness, disability, and masculinity. She seeks to understand the way perverse sexuality, physical damage, and bodily contamination have stimulated—rather than created a crisis for—masculine characters in twentieth- and early twenty-first-century literature.