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7 Accessible Futures, Future Coalitions
A vital moment in coalitional political rhetoric is its ability to construct connections among struggles that may be not only diverse, but opposed to one another in many respects.
—Catriona Sandilands, The Good-Natured Feminist
When describing disability studies to my students, I often draw on Douglas Baynton’s insight that “disability is everywhere in history once you begin looking for it.”1 For Baynton, “looking for it” entails not only recovering the stories of disabled people or tracing histories of disability discrimination but also exploring how notions of disability and able-mindedness/able-bodiedness have functioned in different con- texts. Baynton issues his provocation to historians, but disability studies scholars in other fields have extended its reach, pushing their own colleagues to recognize dis- ability as a category of analysis. Deeply influenced by and indebted to this work, I use this final chapter to read Baynton’s assertion differently. Rather than direct his insight outward, to those not currently working in disability studies, I turn inward, directing it to the field itself. If “disability is everywhere . . . once you begin looking for it,” where do we, as disability studies scholars and activists, continue not to look? Where do we find disability and where do we miss it? In which theories and in which movements do we recognize ourselves, or recognize disability, and which theories and movements do we continue to see as separate from or tangential to disability studies?
These questions, and potential answers to them, have surfaced in previous chap- ters, but in this final chapter I address them more directly. In imagining what accessi- ble futures might look like or might include, I find myself thinking about the possibili- ties of cross-movement work, both intellectually and politically. If disability is every- where once we start looking for it, then why not look for it in the other social justice movements at work in contemporary culture? My understanding of disability rights,
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justice, politics, culture, and scholarship has always been informed by my investments in feminist and queer theories and practices. Reading disability into and alongside those investments is one way to imagine disability differently. In other words, look- ing within disability studies for the traces of other movements while simultaneously looking for disability in places it has gone unmarked is one way of moving us toward accessible futures.
I begin “looking for disability” in a canonical feminist studies text—Bernice John- son Reagon’s influential essay on coalition politics—that is not widely recognized as being “about” disability. Reading disability into it not only allows for an expansion of feminist and disability studies genealogies but also offers a framework for imagin- ing future work. I then move outward from Reagon’s text to explore three potential areas of growth for feminist, queer, crip theory and activism: bathroom politics and contestations over public space; environmental justice; and reproductive justice. Zero- ing in on each of these sites allows us to think through how different formulations of disability encourage (and discourage) unexpected but generative alliances. I close by invoking still more connections and coalitions, making clear the multiple and overlap- ping possibilities for feminist, queer, crip futures.
Reagon’s text serves as an apt introduction to this chapter because of her frank acknowledgment of and engagement with practices of dissent and strife. Through- out the essay, she encourages us to recognize that the benefits of coalition politics are bound up in the difficulties of such politics. Disagreement pushes us to recognize and acknowledge our own assumptions and the boundaries we draw around our own work; without such disagreement, and the ways it compels us to reexamine our posi- tions, we can too easily skim over our own exclusions and their effects. I have chosen each of the sites I highlight here—trans/disability bathroom politics, environmental justice movements, and reproductive justice movements—in large part because they, too, are contentious. They force our attention to the formation of the identities, posi- tions, and practices we name as feminist and/or as queer and/or as crip. They also offer contradictions that are not easily resolvable, contradictions that make difficult any facile claims to “unity” or sameness.
I am influenced here by the work of feminist theorists such as Audre Lorde, Chan- tal Mouffe, and Ranu Samantrai, each of whom argues for the value, and necessity, of dissent. Samantrai explains that “dissenters draw attention to the border zones where . . . norms are negotiated,” subjecting “the terms of membership” in a politi- cal community to “continual revision.”2 Indeed, rather than “expelling conflicts and suppressing their annoying reminders,” a coalition politics that embraces dissent can begin to ask “how we can take advantage” of such conflicts.3 Thus, in using the lan- guage of “coalition,” I am less interested in imagining coalition politics “as a process of dealing with already-constituted interests and identities”—women as discrete group working with disabled people as discrete group—than in thinking through coali- tions as a process in which the interests and identities themselves are always open to
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contestation and debate.4 How does “disabled” shift, expand, or contract in these vari- ous movements and theories? In other words, part of what excites me about the coali- tions I examine here is that they often trouble the boundaries of the constituencies involved. Thinking through trans/disability bathroom politics, then, means not only accounting for “disabled people” working alongside “trans- people,” or even people who are both trans and disabled, but also questioning the very categories of “disabled people” and “trans- people.”
Finding Disability: Feminist Texts, Disability Theory
I teach in a feminist studies program at a small liberal arts college, and my courses are marked “feminist studies” far more often than “disability studies.” The productive overlaps between the two fields, however, allow me to insert disability studies insights and analyses into conversations that are not marked as such; disability often surfaces in our conversations even though we were not explicitly looking for it. In that spirit, I want to offer here a rereading of a text familiar, even canonical, to feminist studies audiences, but one that is not widely recognized as a “disability studies text.” Reading it again, through the lens of disability, opens up additional possibilities for overlap and critique between disability and feminist studies. As my understandings of crip futurity and feminist cross-movement work have been deeply influenced by this essay, it feels fitting to explore it in this final chapter.
“Coalition Politics: Turning the Century,” by Bernice Johnson Reagon, was pub- lished in Barbara Smith’s Home Girls: A Black Feminist Anthology in 1983.5 Reagon reflects on the process of coalition building, asserting that forming coalitions across difference is both necessary and terrifying: necessary, in that in order to create politi- cal change we need to recognize the interrelations among different issues and identi- ties; terrifying, in that we often are working with people unlike us, people who might frame the issues in different ways or to different effects, people who come from differ- ent perspectives or with different histories, people who might challenge our founding assumptions.
Reagon’s essay is based on a presentation she gave at the 1981 West Coast Women’s Music Festival in California’s Yosemite National Forest. As many scholars have noted, her piece bears the traces of this location; her focus on coalitions, and on the limi- tations of monolithic constructions of “woman,” was clearly based on contemporary conversations about racism and classism within the women’s movement and the role (and composition) of women-only spaces.6 I want to highlight, however, the ways in which her essay bears the traces not only of the women’s music festival but also of the Yosemite National Forest.
Reagon begins the essay with this paragraph:
I’ve never been this high before. I’m talking about the altitude. There is a lesson in bringing people together where they can’t get enough oxygen, then having them try
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to figure out what they’re going to do when they can’t think properly. I’m serious about that. There probably are some people here who can breathe, because you were born in high altitudes and you have big lung cavities. But when you bring people in who have not had the environmental conditioning, you got one group of people who are in a strain—and the group of people who are feeling fine are trying to figure out why you’re staggering around, and that’s what this workshop is about this morning.7
Reagon is undoubtedly speaking metaphorically here. She uses this story of being out of breath as a way of talking about how coalitions are hard, uncomfortable, stressful places where we can never fully let go and relax; in coalition, as on the mountain, we can never fully catch our breath. As she explains in the next paragraph, “I feel as if I’m gonna keel over any minute and die. That is often what it feels like if you’re really doing coalition work. Most of the time you feel threatened to the core and if you don’t, you’re not really doing no coalescing.”8 Coalition politics, for Reagon, entails working beyond the limits of one’s comfort zone, being pushed into dangerous territory, engaging with people or practices or principles that frighten because of their difference.
But to read this anecdote solely as metaphor is to erase the specificities of Reagon’s experience.9 Immediately before stating that she feels like keeling over, Reagon explains that she “belong[s] to the group of people who are having a very difficult time being here” because of the high altitude; she is literally having a difficult time catching her breath.10 Thus, for Reagon, “coalition politics,” both the eponymous essay and the practice, begin with a focus on the body. And not just any body, but a limited body, an impaired body. Reagon is theorizing from the disabled body, using her embod- ied experience of disability—having a physical limitation in a sociopolitical setting that acts as if that limitation were nonexistent, or at least irrelevant—as a springboard for thinking about difference, relation, and politics. She illustrates the ways in which experiences of disability can be useful not only in informing our understandings about bodies but also our understandings of ethical relations and political practice.
Part of this analysis, on both the literal and metaphorical level, means reckoning with the bodies that cannot survive, let alone thrive, in particular settings. Reagon’s breathing difficulties at this altitude, combined with her reflections on whose bodies are absent from this “women’s” space, raises questions about the assumptions that undergird feminist practice. Whose bodies, whose experiences, whose desires, and whose identities shape the issues that get framed as feminist, and who does the framing? How accessi- ble—financially, culturally, intellectually, physically—are feminist spaces, spaces in and through which feminist futures are imagined? In other words, Reagon calls feminism to task for creating spaces, both literally and metaphorically, in which certain bodies/minds play no role, or can participate only at great personal risk. She offers a powerful illustra- tion of how the kinds of spaces we imagine often determine the kinds of bodies/minds that can inhabit those spaces. As a result, the conversations that occur in those spaces are dramatically—and all too often invisibly—diminished by the absence of those folks who, for reasons of inaccessibility or exclusion or ignorance, cannot participate.
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Reagon explicitly directs her critique to feminism and the women’s movement, but we can read her text as offering a challenge to disability studies and disability move- ments as well. Although the word “disability” appears only in passing in Reagon’s text, and she does not identify herself as disabled or describe her breathing difficulties in those terms, we can easily read her essay as a narrative of inaccessibility or as an illus- tration of the insights to be gained from disability.11 Recognizing this text as a crip text then allows for a whole set of necessary questions: In focusing so intently on disability identity, how have disability studies and disability rights movements overlooked the crip insights of people like Reagon? How might her formulation of coalition politics, of the need for feminism to acknowledge and grapple with racialized differences, inform a disability studies marked by whiteness, or disability rights movements slow to deal with issues of race and ethnicity? Or how might her focus on breathing difficulties inspire disability analyses of asthma, perhaps even prompting the field to recognize itself in or ally with environmental studies and environmental justice movements? In other words, what can disability studies and disability movements learn from our own exclusions?
Reading Reagon as a crip theorist is one way to begin answering these questions. Such a reading, and the expansive approach to disability politics it entails, means locating the subject of disability studies not just in bodies identified as disabled but in minds and bodies surviving inaccessible spaces, with both “access” and “spaces” defined broadly. It means recognizing contestations over whiteness, or economic disparity, or heteronormativity as part of disability studies and disability activism, not merely side projects or subdisciplines. It means challenging the homophobia and transphobia that lurk within the disability rights movement, marginalizing the expe- riences of queer- and trans-identified people with disabilities. It requires a continued examination of the whiteness and ethnocentrism of disability studies and disability activism in the United States, as well as committed engagement with the work of dis- ability rights, antiglobalization, and antipoverty activists around the globe.
Like Reagon, however, we can pair our internal criticisms of our own positions and movements with engaged critiques of our partners and allies. Thinking through accessible spaces and accessible futures means addressing the exclusions of feminist and queer political visions of the future, highlighting these theories’ reliance on ide- ologies of wholeness, complicity in compulsory able-bodiedness/able-mindedness, and marginalization of disabled people. What is needed, then, is not only a trenchant critique of ableism but also a desire to think disability otherwise.
This kind of robust combination of future dreams and present critique is essential to politics, and it requires leaving open the parameters of our political visions. Our animating questions could then include the following: Who is included or excluded in our political imaginaries? How are “disability” and “disabled person” (or “woman” or “queer” or “race” or . . . ) being defined in these dreams of the future? Who has access to these imaginaries, and how is access being described? Which issues are being
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marked as feminist or queer or crip? And, to return to my earlier questions, where are disability studies or disability movements going to look for disability? Where does dis- ability studies see or recognize itself?
The rest of this chapter profiles sites where answers to these kinds of questions are happening. Each of the following sections offers a snapshot of coalitions in progress, and I include them here as stories of disability told, or being told, otherwise. These sto- ries are necessarily incomplete, but in their incompleteness they provide examples of how to imagine disability differently: finding it in unexpected places, using it to make connections to other social justice movements, and recognizing in it the possibilities of desire. These are, potentially, more accessible futures.
“Calling All Restroom Revolutionaries!” Coalescing around Bodies in Space
Reagon’s text bridges feminist and disability concerns by drawing our attention to the political implications of space, and questions of access and inaccessibility continue to be productive points of overlap across multiple movements for social justice.12 Public toilets, in particular, have long been sites of exclusion and activism; as Judith Plaskow explains, because “access to toilets is a prerequisite for full public participation and citizenship . . . almost all the social justice movements of the last century in the United States have included struggles for adequate toilet facilities.”13 Women moving into tra- ditionally male spaces often discover the bathroom, or lack thereof, to be a key site of sexual harassment and discrimination; the toilet serves as an indicator of the kinds of gendered bodies expected in particular spaces.14 In response, women have turned public restrooms into sites of political agitation and activism, challenging the archi- tectural and political assumption of the male body as the ideal citizen.15 Of course, this ideal citizen is not only male but white, and bathrooms have created not only gender dyads but racial ones: for much of the twentieth century, “urinary segregation” taught users powerful lessons about the intertwining of gender and race in public spaces, particularly in the south. There, too, public restrooms were made into contentious sites of struggle and citizenship, and Elizabeth Abel notes that African American men liv- ing under Jim Crow were violently punished for refusing to use restrooms marked “colored.”16 Public toilets continue to be heavily policed for inappropriate behavior or inappropriate users. Homeless people are frequent targets of attempts to “clean up” public restrooms, as are those practicing public sex, with cities doing everything from locking “public” facilities to refusing to build or install new public restrooms. Private businesses and restaurants typically designate their restrooms as “for customers only,” a restriction that affects not only the homeless but also people who enter public spaces for reasons other than shopping or consumption.17
Given these practices of exclusion and resistance, it is not surprising that the toilet has also been a site of intellectual exploration and scholarly engagement, and there has been a vast expansion of toilet talk in the past few years.18 This work clearly supports Plaskow’s observation that toilets are sites of intersectional study and activism, but
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gender is heavily foregrounded here; histories of gender segregation, policy analyses of “potty parity,” and speculations about nonsexist bathrooms dominate these discus- sions. This focus on gender, especially on gender presentation and identity, often feels absolutely necessary given that using the “wrong” bathroom for one’s perceived gender can lead to harassment, arrest, and violence; moves to create unisex or gender-neutral restrooms continue to meet ridicule and hostility, even as more and more groups lobby for their creation.19
Two clear exceptions to the strict gender segregation of toilets (and to the hostility greeting attempts to desegregate such toilets) are the “family” restrooms increasingly popular in airports and the single-stall restrooms marked with a wheelchair.20 The notion that people of one gender might need to assist a child or elder of another gender is much more readily accepted and accommodated than the notion that people with different gender presentations or identities might use the same restroom (even if, as in the case of single-stall toilets, at different times).21 Similarly, we are more willing to accept people of all gender identities and sexes using the same space if those people are already seen as separate from the body politic because of their disabilities.22 Simply put, unisex/gender-neutral bathrooms are neither threatening nor ridiculous as long as gender nonconformity is not the main reason for their use or creation.
Once they are created, however, such bathrooms are easily taken up for other purposes. In a queer expansion of the meanings of both “family” and “accessible,” these spaces are increasingly recognized as options for genderqueer and trans users. Women’s rooms, Sally Munt explains, are sites of uncomfortable and often threatening exchanges with those who cast her butch body as dangerously out of place. In this con- text, the third space of the accessible stall offers a much-needed “stress-free location, a queer space in which I can momentarily procure an interval from the gendered public environment, and psychically replenish.”23 Munt’s pleasure is tempered, however, by her feelings of trespass; she sees herself as “treading on another borderline, not wor- thily disabled.”24 Yet cripping her account—not to mention cripping the disabled stall itself—leads to the recognition that gender-segregated spaces are not any more acces- sible to her than narrow doorways are to me, although the forms such inaccessibility takes are different.25 The solution to this issue is not to assign more “worthiness” to my use than Munt’s (or vice versa) but rather to recognize the possibility for queercrip alliances in the space of the toilet. If, as Munt suggests, the disabled toilet is a “room set aside for the disjunctive, ungendered and strange,” then we can use the potential openness of those terms as grounds for coalition.26
PISSAR (People in Search of Safe and Accessible Restrooms) offers one example of this kind of collaboration. Founded at the University of California–Santa Barbara in 2003, PISSAR explicitly linked disability access with gender access, creating a bath- room checklist that assessed a restroom’s disability-accessibility (e.g., door width, dispenser heights, Braille signage) right alongside its genderqueer-accessibility (e.g., functioning door locks, gender-specific signage, location) (see Appendix A).27 “PISSAR
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Patrols,” which featured activists carrying clipboards and wearing “free 2 pee” shirts, used the checklist to rate and map campus restrooms. In so doing, they brought people together around the issue of access, regardless of whether or how they identified in terms of disability and gender. More recently, TransBrandeis, part of the GLBT/Queer Alliance at Brandeis University, expanded their mapping and survey project to include attention to disability access, and disability activists at the University of Washington have included attention to trans and genderqueer needs in their own access activism.28
It remains rare, however, for issues of disability access and trans access to be raised concurrently on GLBTQ organizational websites or in the (often sensational- ized) news coverage about trans campus activism.29 The frequency with which activ- ists, administrations, and reporters use the language of “gender-blind,” as opposed to “gender-neutral,” “unisex,” or “nongendered,” suggests that critical disability per- spectives are not at play here.30 By the same token, my own experiences with PISSAR suggest reluctance on the part of some disability activists to engage with trans and genderqueer issues: one of the disabled students initially opposed forming PISSAR for fear that addressing trans access would dilute the struggle for disability access. The annual conference of the Society for Disability Studies has yet to consistently include gender-neutral restrooms as a required component of access, and too few disability studies scholars include attention to the relationship between trans and disability in our work on access, sexuality, stigma, or medicalization, only a few potential areas of overlap.31 Trans essayist and activist Eli Clare is widely cited in disability studies, but scholars usually treat his writings on transphobia or on transgender experiences in general as an aside to his work on disability (as if the two were not intimately, and often explicitly, intertwined).
In his introduction to Toilet: Public Restrooms and the Politics of Sharing, Har- vey Molotch points to the political dilemma facing disability communities as we look to the loo: “Should disabled people demand to be part of the convention [of gender segregated bathrooms]? Or should they be the leaders of a movement to combat it?”32 One could certainly make the argument that, given the link between access to public spaces and access to the body politic, not to mention the link between hegemonic gen- der identities and cultural intelligibility, we should lean toward the former. Disabled people should have access to gendered restrooms just as nondisabled people do. The problem with that answer, though, is that it fixes—in both senses of the word—the problem of access too narrowly; rather than transform existing structures, both physi- cal and political, it merely argues for including more people within them (by excluding others). Not only does it overlook the reality that some disabled people are also, simul- taneously, trans and genderqueer people (a possibility similarly erased in Molotch’s framing of the question), it also forecloses on the possibility that disability studies and activism could ally with other movements.
Thus, I argue for the latter response, with disabled people and disability move- ments working to undo the gendered conventions of the toilet as part of our larger
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struggles for access to public space. Such a move feels all the more necessary given that transgender and transsexual people were explicitly excluded from coverage under the ADA.33 We can treat the public toilet as a site for undoing this exclusion, recogniz- ing public inaccessibility as a problem that connects both those authorized to claim disability and those who are not. Thinking through access can then become a way of thinking through questions of disability identity, analyzing when it is deployed, and by whom, and to what effects. As Tanya Titchkosky argues, “[A]ccess [is] not . . . a syn- onym for justice but a beginning place for critical questioning.”34
Recognizing bathroom access as a site for coalition building can potentially move us beyond the physical space of bathrooms, turning our critical attention to the acts of elimination that occur beyond the socially sanctioned space of the toilet, public or private. As Carrie Sandahl explains, “Our society cannot tolerate incontinence; once beyond infancy, incontinence divides the human from the non-human.”35 Not only is there profound shame and disgust directed toward those who “cannot control them- selves,” as the common colloquialism puts it, but the inability to control oneself is often what drives elderly or disabled people into nursing homes and other institutions. Indeed, this link between continence and full citizenship is too often written into pol- icy and practice: Sandahl condemns the fact that often “Medicare and Medicaid will pay for these products [adult diapers and other incontinence products] if you’re in a nursing home, but not if you’re living at home.”36 Coalitions of feminists, queers, and crips lobbying not only for broadly accessible toilets but also affordable and accessible diapers may not yet be familiar, but I hope it is starting to sound necessary. We should not limit the “restroom revolution” to the four walls of the restroom.
Indeed, part of the pleasure and possibility of restroom revolutions is that they offer the opportunity to expand the terms of our movements and our theories. As Lisa Duggan notes in her praise of Toilet, “Peeing is political”—and so are the places where peeing happens (or doesn’t) and the bodies doing the peeing. Attending to the space of the toilet not only makes room for coalitions between trans and disability concerns, it continues the crip theory move of keeping the meanings and parameters of disability, access, and disability studies open for debate and dissent.
Finding Disability in Environmental Justice
Typing “environmentalism” or “environmental justice” into databases alongside “ill- ness” or “disability” brings up hundreds of hits, but the majority of them are public health articles describing conditions linked to environmental exposure (e.g., asthma, cancers, and skin rashes). These pieces map disease clusters, detail specific exposures, record pollutant levels, and/or track chemicals and other pollutants suspected of being carcinogenic or teratogenic (“teratogenic” is from terata, or monster, and refers to birth “defects” or “malformations”).37 Finding illness or disability in these texts means finding stories of error and aberration; illness and disability appear almost exclusively as tragic mistakes caused by unnatural incursions into or disruptions of the natural
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body and the natural environment. These were not the kind of pieces I had in mind when I began researching links between disability and environmentalism.
These were not the kind of pieces I had in mind, but that is not to say that they play no role in this book or in disability studies more broadly. On the contrary, such questions of body/environment interaction belong squarely within the purview of dis- ability studies, as do public health analyses of toxic neighborhoods and sick buildings. We need a disability studies and disability activism that can challenge the siting of power plants or waste dumps in neighborhoods already overburdened by toxic indus- tries; we need disability analyses that condemn the poisoning of bodies (human and otherwise) by both catastrophic spills and explosions as well as the “everyday” pollu- tion of dry cleaners, contaminated water, and landfills. Disability and environmental movements can find common cause in their concern with the built environment; lead paint and cracked or missing sidewalks create disabling environments for everyone living around them.38
The essays I tracked down, then, are essential to disability studies, but most of them have yet to be influenced by disability studies (much as disability studies has yet to engage fully with this literature). What is needed, then, are analyses that recognize and refuse the intertwined exploitation of bodies and environments without demon- izing the illnesses and disabilities, and especially the ill and disabled bodies, that result from such exploitation. As Valerie Ann Johnson argues in “Bringing Together Fem- inist Disability Studies and Environmental Justice,” one of the few essays explicitly doing this kind of bridge work, “We [in the environmental justice movement] tend to conflate disability, disease and environmental injustice. What is needed is to disaggre- gate the possible results of environmental injustice (i.e., exposure to toxic substances emanating from landfills or hog operations that injure the body) from the person, how- ever they are embodied.”39
This kind of disaggregation requires a more complex and interconnected under- standing of disability than is currently circulating in both disability studies and environmental studies. In terms of disability studies, the continued reliance on the social model (and its corollary assumption that there can be no room for medical approaches) makes it difficult to engage with antitoxics movements that work to elimi- nate or at least decrease disability. My own reluctance to recognize articles warning of birth defects and deformities as part of my project is an example of this difficulty. Yet, as Stacy Alaimo argues, disability studies and activism would “be enriched by attending not only to the ways in which built environments constitute or exacerbate ‘disability,’ but to how materiality, at a less perceptible level—that of pharmaceuticals, xenobiotic chemicals, air pollution, etc.—affects human health and ability.”40 Similarly, environmental studies and activism could benefit from a more critical approach to disability, one that recognizes disability as a cultural, historical, and political category, rather than simply a medical one. We need environmental analyses that do more than cast disability and disabled bodies/minds as tragedies or aberrations, in part because
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focusing exclusively on disabled people as the signs of environmental injustice effaces the ways in which we are all affected by toxic pollution and contamination, not just those of us with visible or diagnosed “abnormalities.”
Moreover, by relying on the specter of disability to motivate public response, environmental movements rely on what Giovanna Di Chiro calls “eco(hetero)norma- tivity.”41 Making connections across disability, environmental, and queer studies, Di Chiro offers a model for the kind of coalitional thinking that can lead to more acces- sible futures. She documents how environmentalists “mobilize socially sanctioned heterosexism and queer-fear” by creating and circulating sensationalized accounts of “sexual abnormalities” in fish, animals, and humans. In so doing, mainstream envi- ronmentalists reify hegemonic ideals of gender and sexuality, thereby foreclosing on the possibility of cross-movement work. Rather than relying on uncritical concepts of “normal” bodies and orientations, Di Chiro argues that antitoxics activists should focus on more “serious health problems associated with POPs [persistent organic pol- lutants],” such as “breast, ovarian, prostate, and testicular cancers, neurological and neurobehavioral problems, immune system breakdown, heart disease, diabetes, and obesity.”42
We can extend Di Chiro’s concern about the normalizing strains of antitoxic environmentalism by questioning not only the queer fear embedded within these discourses but also the disability fear.43 How can we continue the absolutely neces- sary task of challenging toxic pollution and its effects without perpetuating cultural assumptions about the unmitigated tragedy of disability? How can we attend to “seri- ous health problems” while also deconstructing the stigma attached to those problems or even historicizing the very construction of such conditions as problems? One way is to challenge environmental representations of disability that are completely removed from the experiences of people living with those very disabilities. Or, to put it dif- ferently, disability scholars and activists can work to ensure that descriptions of the possible impairments linked to toxic exposures do not replicate ableist language and assumptions. Surely we can find ways to protest lead and mercury poisoning with- out resorting to warnings about how “developmental delays, learning disabilities, ADHD, and behavioral disorders extract a terrible toll from children, families, and society. . . . The costs associated with caring for these children can be high for families and society. Special education programs and psychological and medical services drain resources.”44 These statements, posted on the website of the Collaborative on Health and the Environment, not only perpetuate long-standing fears about the economic burden of disabled people but, more disturbingly, imply that disabled people—rather than polluting industries—are the ones responsible for draining resources. Disability studies and activism can be a resource here, helping environmental movements avoid this kind of misdirection and create broader coalitions against pollution.
Breast cancer lends itself to these kinds of complex, tangled, and ambiguous reck- onings, and feminist theorists and activists continue to produce rich work analyzing
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its connections. Audre Lorde’s The Cancer Journals has found a home in disability studies, with scholars pointing to Lorde’s searing indictment of prosthetics and pass- ing; Lorde’s refusals to become a compliant patient and, relatedly, to hide her mastec- tomy behind puffs of wool have been a welcome resource for disability movements searching for models of how to refuse medicalized silence. Environmental studies has found the book useful as well for “its insistence on the interconnections between body and environment, which poses cancer as a feminist, antiracist, and environmental jus- tice issue.”45 As Alaimo’s reading of the text makes clear, the book serves as a bridge between these various movements. Lorde refuses breast prosthetics in order to trans- form silence not only about illness and the body but also about the environmental causes of illness. “Lorde displays her scars against the cancer establishment,” explains Alaimo, challenging its denial of “the environmental causes of cancer.”46
Environmental and disability studies and activisms can find common cause in critically examining the medical industrial complex and its current approach to can- cer. Organizations such as Breast Cancer Action (BCA) can be understood as simulta- neously deploying disability and environmental analyses. Breast Cancer Action offers a strong challenge to cancer rhetorics that present breast cancer as primarily a problem of individual bodies, a challenge that echoes critiques of the medical model of disabil- ity. In insisting that we attend to both voluntary and involuntary exposures to carcino- gens, BCA moves away from individualized models of cancer to more structural ones; similarly, in arguing that it is “not just genes, but social injustices—political, economic, and racial inequities—that lead to disparities in breast cancer outcomes,” BCA argues for a more political/relational model of illness and, by extension, disability.47
The Disability Rights Education and Defense Fund (DREDF) is one of the pio- neers in this work, laying the groundwork for environmental justice projects informed by disability rights. Silvia Yee, one of the staff attorneys at DREDF, is positioning the organization as a resource for people living in communities overburdened by toxic industries and emissions. The Disability Rights Education and Defense Fund under- stands that those living in such communities may not have accurate information about the availability of disability protection laws and social services; even though many of the people living in overburdened communities are already ill or disabled, or may become so because of their exposure to toxins, they may not identify themselves as dis- abled or recognize themselves within disability rights movements. Yet, as Yee explains, federal and state disability laws could potentially be used to
reduce environmental hazards for the entire community. For instance, children with respiratory disabilities in a public school using chemical pesticides could potentially bring a cause of action that will reduce pesticide exposure for all their classmates as well as the surrounding community. These litigation ideas have been largely unexplored, both theoretically and in practice.48
Recognizing the links between disability and environmental justice opens the door to such explorations. Yee and DREDF position disability laws as a way to protect entire
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communities; “disability rights” thus becomes a tool used not only on behalf of dis- abled people, and affecting not only disabled people, but for all people.
Activism by and on behalf of people with multiple chemical sensitivities (MCS) provides another example of deploying categories of disability to do environmental justice work. As with trans and genderqueer folks using the language of access to dis- rupt gender segregation, MCS activists discuss their need for scent- and chemical-free spaces as a component of accessibility. “How and Why to Be Scent-Free,” a flyer dis- tributed to attendees of the Queer Disability Conference (held in San Francisco in 2002), offers one such example (see Appendix C); the flyer first details the physical and cognitive effects of toxic exposure in order to testify to the necessity of safer spaces:
Symptoms of chemical exposure include dizziness, nausea, slurred speech, drowsi- ness, irritation to mouth, throat, skin, eyes, and lungs, headache, convulsions, fatigue, confusion, and liver and kidney damage. As you can imagine, these symp- toms constitute serious barriers for people with chemical sensitivities in work, life, and of course, conference attendance. Promoting scent-free environments is very much like adding ramps and curb-cuts in terms of the profound difference in acces- sibility it can produce.49
Reading the work of scholars and activists with MCS makes this point abundantly clear, as they describe feeling trapped in their homes, or forced out of their homes, or made ill by their encounters with other bodies and environments.50 Disability studies scholars and activists, with their experience linking access to spaces with access to the body politic, can serve as useful allies here; these stories of chemically disabling envi- ronments are also stories of inaccessibility. Both disability studies and environmental justice disrupt what Mel Chen calls “the fiction of independence and of uninterrupt- ability”; we can see in this shared disruption the possibility for coalition.51
Meet Reproductive Justice
Women of color have been at the forefront of struggles to shift the focus of reproductive rights movements and public discourses about reproduction away from a single-issue focus on abortion.52 Without denying the importance of legal abortion (and especially access to legal abortion), activists have long argued for a much broader approach, one that takes into account the widespread social and economic disparities among women. Andrea Smith explains that “the pro-life versus pro-choice paradigm reifies and masks the structures of white supremacy and capitalism that undergird the reproductive choices that women make.”53 As Smith and other activists and scholars detail, the lan- guage of choice presents women more as consumers than citizens, opening the door for some women to be cast as bad decision makers and for some choices to be deemed bad or inappropriate. Moreover, the language of choice fails to take into account how different women have different access to different choices; it removes from analysis the conditions under which women and families make decisions about reproduc- tion. Indeed, choice rhetoric can easily be deployed to cover over sterilization abuses:
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informed consent policies, which would seem to support women’s “choices,” have often been compromised by racism, classism, ableism, and xenophobia.54 As a result of these histories and practices, many activists within these movements use the language of “reproductive justice” to “emphasize the relationship of reproductive rights to human rights and economic justice.”55
I offer this brief overview of reproductive justice for three reasons. First, I want to highlight that both reproductive justice activists and disability activists interrogate the rhetoric of choice found in reproductive rights movements. Much as the experiences of women of color, immigrant women, poor women, and indigenous women exceed the notion of “free choice,” the language of choice fails to account for the ableist context in which women make decisions about pregnancy, abortion, and reproduction in general. As Marsha Saxton notes, only certain choices are recognized as valid choices, and only certain choices are socially supported; “Our society profoundly limits the ‘choice’ to love and care for a baby with a disability.”56 Shelley Tremain echoes Saxton, warning that ableist notions of “prenatal impairment” “increasingly limit the field of possible conduct in response to pregnancy.”57 Disability studies scholars and activists also argue that the continued commodification of pregnancy, a process enabled and perpetuated by the framework of choice, facilitates ableist rhetoric of fetuses, babies, and children as “defective”; positioning women as consumers and babies as products makes possible conversations about and practices toward “selecting” the baby one wants (and dese- lecting or terminating the babies one doesn’t want). A critique of choice, then, bridges both movements.
Second, I want to encourage a greater familiarity with, and support of, reproduc- tive justice movements and frameworks on the part of disability studies and activism. As the definitions above suggest, reproductive justice insists upon a cross-movement approach to reproductive issues, recognizing that questions of reproduction cannot be disentangled from those of race, class, and sexuality, not to mention poverty, welfare, health care, social services, environmental justice, and so on. Disability is an essential piece of this assemblage, and reproductive concerns about disability cannot be untan- gled from these other factors. Thinking about disability and reproduction requires the kind of cross-movement analysis promised by reproductive justice. Even if reproduc- tive justice movements do not always live up to this promise in terms of disability (as when a major reproductive justice text relegates disability to a single footnote), the pos- sibilities remain.58 In fact, I think reproductive justice frameworks offer the possibility not only of cross-movement analyses that fully integrate disability but also of fuller cross-disability analyses. Physical disabilities and intellectual disabilities are often con- strued differently in debates about prenatal testing and selective abortion, and disabil- ity movements need to acknowledge (even as we interrogate) those distinctions.
Third, thinking about reproductive politics only in terms of abortion and the pro- choice/pro-life binary makes coalition building among disability and reproductive rights and justice activists more difficult. As Smith argues, the pro/anti binary fosters
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“simplistic analyses of who our political friends and enemies are,” which can lead us to “lose opportunities to work with people with whom we . . . have sharp disagree- ments, but who may, with different political framings and organizing strategies, shift their positions.”59 Smith’s warning strikes me as especially salient for the disability and reproductive rights relationship. Within the logic of the pro/anti abortion binary, anyone who expresses concern about particular abortion practices or rhetorics can too easily appear as an enemy of feminism and an opponent of reproductive rights. Repro- ductive rights activists are then wary of engaging with disability critiques of prenatal testing and selective abortion; within this context, to take up these critiques, seriously wrestling with the ableist implications of prenatal testing, feels dangerously close to dismantling abortion rights. Similarly, disability rights activists are wary of engag- ing with reproductive rights groups who continue to use disability as a justification for abortion; it can be hard to find common ground with organizations that take for granted the undesirability of disability. Reproductive justice approaches, which insist as much on the right to continue a pregnancy (and be supported in doing so) as the right to terminate one, offer one possible means of connection.60
This kind of connective work is necessary as antireproductive rights activists increasingly use progressive rhetoric for their own purposes.61 Capitalizing on the eugenic and ableist histories of the reproductive rights movement, opponents of abor- tion are moving steadily to present themselves as the better ally to disability move- ments. Feminists for Life (FFL), for example, explicitly defines abortion as a form of discrimination against disabled people, appropriating the rhetoric of disability move- ments in their campaign against abortion.62 This deployment of disability rights is evi- dent in their poster series, “It’s time to question abortion,” which includes a poster equating abortion to eugenics. The black-and-white poster features a photograph of an unsmiling dark-skinned man sitting in his manual wheelchair; he has his arms crossed and a defiant expression. “Would you say that to my face?” appears in hand- written script across the photograph, while the following text appears below the pic- ture: “Would you tell me that I never should have been born? That is the message sent when people talk about aborting ‘gross fetal anomalies.’ People who overcome adver- sity inspire, challenge and enrich our world.” I have often heard disability activists respond to ableist abortion rhetoric with that very question: “Would you tell me that I never should have been born?” Debates about the proliferation of prenatal testing often draw similar responses, with disabled people wondering aloud whether they would have been aborted if their mothers had had the chance.63 In making space for this line of thinking, the FFL presents itself as more aligned with the interests of disability communities than the pro-choice movement is; according to this logic, advocates for abortion and other reproductive rights are too closely tied to eugenic practices and histories to support disabled people.
Yet working with reproductive rights and justice organizations can be a way for disability movements to make progress on long-held goals, as seen with the Prenatally
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and Postnatally Diagnosed Conditions Awareness Act of 2008 (also known as the Ken- nedy Brownback Act). The legislation requires doctors, genetic counselors, and other medical professionals to provide current, accurate, and comprehensive information about disability when they consult with women about their pregnancies. Its purpose is to ensure that women are adequately informed before they make any decisions about continuing or terminating their pregnancies; covered information includes available social services, support groups, and the experiences of disabled people and families with similarly-disabled children. Although it is still too early to evaluate the law’s effi- cacy in terms of the quality of information parents receive, the very passage of the law is significant. By stressing parents’ need for information prior to decision making, the Kennedy Brownback Act underscores the fact that there is a decision to be made; it begins to unravel the assumption that abortion is the only viable, rational response to a positive test. Indeed, by focusing on the right to true informed consent, the act acknowledges that women have typically been given inaccurate or incomplete infor- mation about disability, information that both reflected and perpetuated cultural fears and stereotypes about disability.64
The law is also significant in that it was supported by both disability and repro- ductive rights and justice organizations. Generations Ahead, recognizing in the bill the potential for cross-movement collaboration, fostered a partnership among the World Institute on Disability, the Disability Rights Education and Defense Fund, the National Women’s Health Network, and the Reproductive Health Technologies Project. Together the five organizations disseminated an information sheet about the bill, urging their allies to support the legislation.65 It was, admittedly, an easier sell for disability rights groups. Reproductive rights organizations were wary of the bill, worried that it was another sideways attempt to restrict women’s access to abortion; then Senator Sam Brownback’s cosponsorship of the bill fueled these fears because of his longstanding and vocal opposition to reproductive rights. The coalition of dis- ability and reproductive rights groups eventually convinced their allies not to oppose the bill, making the argument that everyone would benefit from more and improved information about disability. They posed the problem not in terms of abortion per se, thereby sidestepping the entrenched pro-choice/pro-life binary, but rather in terms of eliminating the ableist bias in genetic counseling and improving the information and supports given to women expecting a disabled baby.
Two seemingly disparate events in early October 2010 set the stage for another moment of coalition building between disability and reproductive rights and justice movements: Robert Edwards was awarded the Nobel Prize in medicine for his work developing in vitro fertilization; and Virginia Ironside, a British advice columnist, generated controversy over her comments about the alleged suffering of disabled chil- dren. Both figures publicly promoted the use of reproductive technologies to select against disability. Edwards argued that it would be a “sin of parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to
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consider the quality of our children.”66 Several pro-life and antiabortion groups seized upon this quote in their condemnation of Edwards’s award, but his position on dis- ability was otherwise ignored in the media coverage; it was unremarkable.67 Ironside’s position on disability, on the other hand, is precisely what generated media coverage, but there, too, the assumption that disability is best met with abortion went largely unchallenged. In a televised debate about abortion, Ironside described the abortion of “a baby [that] is going to be born severely disabled” as the “act of a loving mother”; she then offered that, faced with such “a deeply suffering child,” she would not hesi- tate to “put a pillow over its face,” as would “any good mother.”68 Although Ironside’s comments about infanticide were quickly condemned, her assumption that abortion was the best response to disability generated little discussion.69 More to the point, her decision to use the specter of disability as a justification for abortion continued a long pattern of pitting disability rights against reproductive rights.
In response to these events, which happened within a couple of days of each other, a group of six scholars and activists (including myself) drafted a statement articulating a disability and reproductive rights and justice position; it currently has over 150 signa- tories, both organizations and individuals (see Appendix D).70 Titled “Robert Edwards, Virginia Ironside, and the Unnecessary Opposition of Rights,” the statement presents reproductive rights and justice as fully intertwined with the rights of and justice for people with disabilities:
As people committed to both disability rights and reproductive rights, we believe that respecting women and families in their reproductive decisions requires simul- taneously challenging discriminatory attitudes toward people with disabilities. We refuse to accept the bifurcation of women’s rights from disability rights, or the belief that protecting reproductive rights requires accepting ableist assumptions about the supposed tragedy of disability. On the contrary, we assert that reproductive rights includes attention to disability rights, and that disability rights requires attention to human rights, including reproductive rights.
In drafting the statement, we rehearsed familiar debates over terminology and affilia- tion: Were we discussing human rights or women’s rights? Did we want to refer to our- selves as feminists or leave such identifications more open? Should we use the language of disability rights or disability justice? Would it be accurate to describe current prac- tices as eugenic or would that be too inflammatory? On each count, we opted to use the broadest and most familiar terms and frames possible; although some of us might individually make different decisions, we wanted a critical mass of “people committed to both disability rights and reproductive rights” to recognize themselves in our call. Indeed, it is these kinds of questions that can, we hope, lead to further articulations, coalitions, and conversations.
What seemed key to any document was a refusal of the bifurcation of disabil- ity rights and justice from reproductive rights and justice. We knew that disability
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activists, particularly those less directly engaged with reproductive justice movements and frameworks, desperately needed a clear statement from reproductive rights activ- ists and organizations that they would not accept “the rhetorical use of disability as an argument for abortion rights.”71 Similarly, reproductive rights groups needed a signal that a significant number of disability activists and scholars were willing to articu- late their support for women’s reproductive rights. As with the Prenatally and Post- natally Diagnosed Conditions Awareness Act, the statement in no way condemns or limits individual women’s choices but rather speaks to the widespread cultural dis- paragement of disability and disabled people. In identifying shared values between disability and reproductive movements, the statement explicitly calls for continued collaboration:
We hope, with this statement, to support other activists and scholars who are equally committed to both reproductive rights and disability rights. We hope that as advo- cates in movements that share similar values around civil and human rights we can continue to speak out against the use of reproductive rights to undermine disability rights and the use of disability rights to undermine reproductive rights.
This statement was made possible by the work of feminist and disability studies schol- ars who have been steadfastly refusing the bifurcation of reproductive rights and dis- ability rights for decades.72 Adrienne Asch, Anne Finger, Rayna Rapp, Dorothy Rob- erts, Marsha Saxton: all demonstrate that challenging ableism, even within the context of reproductive politics, is not necessarily the same as challenging or limiting women’s access to abortion.73 Perhaps to make that point clear, especially in a context in which disability is being deployed to undermine abortion rights, those trying to bridge the two movements have often been very explicit about their allegiances. In “Abortion and Disability: Who Should and Who Should Not Inhabit the World?” Ruth Hubbard states four separate times that she supports a woman’s right to abortion, whatever her reasons.74 The fact that she felt compelled to repeat this belief over and over again tes- tifies to the difficulty facing those who want to question the ableist underpinnings of the system of prenatal testing without questioning access to abortion. Yet these very scholars, as well as those involved in the actions I describe here, argue that having to make decisions about reproduction in the face of ableist representations of disability and in a culture “that promises much grief to parents of children it deems unfit” harms everyone.75 To put it plainly: critically examining the reasons why women choose to terminate pregnancies based on disability, challenging reproductive rights movements for using disability as a justification for legal abortion, and deconstructing the assump- tions about disability built into prenatal testing policies and practices—none of these necessarily translate into denying women’s access to abortion.
In fact, failing to do these things may in fact undermine women’s access; at the very least, it makes it more difficult for reproductive rights and justice movements to support and be supported by disability rights and justice movements. I close this
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section with a provocation, one that also appears in one of the founding texts of femi- nist disability studies. In their contribution to their anthology Women with Disabili- ties: Essays in Psychology, Culture, and Politics, Adrienne Asch and Michelle Fine argue for the right to abortion “for any reason [women] deem appropriate.”76 Following Asch and Fine, rather than “presume or prescribe any reason (for example, ‘the tragedy of the defective fetus’),” we should defend women’s right to make their own decisions about reproduction, fully supporting them in having or not having a child.77 Abortion for any reason and under any circumstance must then be accompanied by accessible and affordable prenatal care for all women, as well as reliable and affordable child care, access to social services, and the kind of information about and supports for disability mandated in the Kennedy Brownback Act.
I know that I am arguing for an impossibility, at least in the current political cli- mate. We are moving farther and father away from the radical feminist call of “abor- tion on demand,” seeing more and more burdens on abortion as acceptable rather than unduly prohibitive. Yet when we force women (and reproductive rights, health, and justice movements) living in an ableist culture to prove that their abortions are “justifi- able,” disability remains a convenient and effective justification for preserving at least a minimal right to abortion. Even those who are uncomfortable with seeing disability as the grounds for abortion may find themselves in the untenable situation of deciding which conditions are grounds for abortion and which are not. When the legality of abortion hinges on some pregnancies being seen as “abortable,” drawing lines between impairments becomes inevitable: it is acceptable to abort for blindness but not deaf- ness; it is permissible to abort for Down syndrome but not for an atypically-formed hand; this condition is too severe but that one is not. Disability movements cannot win in these conversations; I agree with Adrienne Asch and others who argue that casting some impairments as justification for abortion harms those currently living with those impairments.78 Making disability do the work of defending abortion may be effective in securing abortion rights in the short term, but it does so by trafficking in discriminatory stereotypes about disability. Moreover, its long-term effectiveness is doubtful, as it opens the door to a continued interrogation of individual women’s reasons and decisions.
It is still true that “neither the pro-choice nor the disability rights movement has consolidated around a position on ‘choice’ and disability,” and neither have reproductive rights and justice movements more broadly.79 Even in arguing for unrestricted access to abortion, I am not calling for such consolidation, at least not consolidation around a single position. I offer this provocation, one that has been offered many times before by others, in order to continue the process of articulating feminist disability positions on reproduction. We need to expand the terrain of dialogue, moving away from such a limited focus on suffering, quality of life, and unlivable disabilities—notions that often perpetuate ableist assumptions—and toward creating opportunities to support reproductive justice for all, including for and by disabled people. Continuing to accept
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disability as the reason to keep abortion legal, and casting abortion as the only reason- able choice when dealing with disability, is a narrowing of both abortion rights and the terms of debate. So, too, is the assumption that the meaning of “suffering” or “quality of life” is self-evident and monolithic; rather than using these concepts as if they “obvi- ously” led us to only one conclusion, we could attend instead to their shifts in mean- ings across different registers, contexts, or bodies/minds. As Sujatha Jesudason argues in her description of Generations Ahead’s methodology, coalitions around genetic and reproductive technologies require a willingness to take risks and have frank dialogue about the issues that divide us. Having these kinds of difficult conversations can help different movements discover and articulate their shared values while also laying the groundwork for future conversations as values, identifications, and goals change.80
Accessible Futures
In presenting these three possibilities of crip coalition as accessible futures, or as femi- nist/queer/crip futures, I have focused on only a few possibilities out of many. I could have discussed antiwar protests, for example, and the need to speak out against the dis- abling effects of the US war on terror. The military-industrial complex causes illness, disability, and death on a global scale, and there is much work to be done in theorizing how to oppose war violence and its effects without denigrating disability and disabled people in the process. (We can see still further links here with environmental justice movements, as the US military is one of the world’s worst polluters.)
Or what of potential links between the prison abolition movement and deinstitu- tionalization movements? There certainly is much to be gained in critically examining the prisons, nursing homes, and asylums of the past and present. The prison indus- trial complex serves as the primary source of (inadequate) health care for increasing numbers of poor people and people of color, notes Dorothy Roberts, who offers as an example the fact that the psychiatric wing of the Los Angeles County Jail “is the larg- est mental health facility in the country.”81 Prisons, moreover, not only house disabled people but produce them: violence, isolation, and inadequate and inconsistent access to medicine and health care have a disabling effect on the bodies and minds of inmates and prisoners.82 How might probing these links allow us to recognize the problem Liat Ben-Moshe describes as “trans-incarceration” or “the move from one carceral edifice such as a psychiatric hospital to another such as a jail”?83
Or I could have explored connections between disability movements and move- ments for the rights of domestic workers. At a 2009 protest in Oakland challenging state budget cuts to health care, I watched a group of disabled people and union work- ers not trade but share chants: “We are the union, the mighty, mighty union!” they all shouted, followed by “We’re out, we’re loud, we’re disabled, and we’re proud!” As I watched these interactions, and participated in both sets of chants, I kept thinking about Robert McRuer’s concept of “the nondisabled claim to be crip” and his reminder that it is often useful, “for the purposes of solidarity, to come out as something you
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are—at least in some ways—not.”84 Yet we can also see these union workers’ claim- ing of disability not only as an act of solidarity or affiliation but also as a recogni- tion of what McRuer calls “the disability to come.” Some of these women (and they were mostly women) are themselves sick or disabled, and many more will become so through this hard work.85 In other words, not only are there overlaps between those communities (many care workers are disabled or will become so), there are also over- laps between their needs: both groups will benefit in a system that values attendant care and the workers who provide it.86
Or, to turn a critical eye on my own coalitional imaginings, we can trace how each of the issues and movements I have discussed separately in this chapter are themselves intertwined. These imaginings are, in Donna Haraway’s framing, “partial”: I have selected moments that I myself am involved in and partial to, and they are necessarily incomplete. Not only could we add still other coalitions to this list, we could also com- plicate, extend, critique, refute, and enrich the cases I have included here.
Indeed, these coalitional moments will be known to many of you; my provoca- tions may feel more familiar than provocative. Yet that possibility is part of my moti- vation for including them here. Not only am I interested in pushing the parameters of disability studies to include these not-really-so-disparate sites, I am also invested in making clear that this work is happening. In other words, I mention these vari- ous coalitional moments not because they currently are absent but because they are present, vibrant, and ongoing. There is rich disability (and feminist, and queer, and environmental, and racial justice, and reproductive, and . . . ) work happening in each of these locations; alternative political imaginaries are being debated and discussed in and through these various political practices. Disabled people have more than a dream of accessible futures: we continue to define and demand our place in political discourses, political visions, and political practice, even as we challenge those very questions and demands. More accessible futures depend on it.
A N e w V i s i o n
f o r a d v a n c i n g o u r m o v e m e n t
“Reproductive Justice
is important
because it tells us
the truth
about our bodies,
our lives,
our families,
our world.”
ACRJ is a founding member of the SisterSong Women of Color Reproductive Health Collective
f o r r e p r o d u c t i v e h e a l t h,
r e p r o d u c t i v e r i g h t s a n d
r e p r o d u c t i v e j u s t i c e.
We believe reproductive justice is the complete physical,
mental, spiritual, political, economic, and social well-being
of women and girls, and will be achieved when women and
girls have the economic, social and political power and resources
to make healthy decisions about our bodies, sexuality and
reproduction for ourselves, our families and our communities
in all areas of our lives.
For reproductive justice to become a reality, we must undergo a rad-
ical transformation; change must be made on the individual, com-
munity, institutional, and societal levels to end all forms of oppres-
sion so that women and girls are able to thrive, to gain self-deter-
mination, to exercise control over our bodies, and to have a full
range of reproductive choices. The control and exploitation of
women and girls through our bodies, sexuality, and reproduction is
a strategic pathway to regulating entire populations that is imple-
mented by families, communities, institutions, and society. Thus,
the regulation of reproduction and exploitation of women’s bodies
and labor is both a tool and a result of systems of oppression based
on race, class, gender, sexuality, ability, age and immigration sta-
tus. This is reproductive oppression as we use the term.
In this paper, we discuss the three main frameworks for address-
ing reproductive oppression, the historical context for the
development of these frameworks, and the creation of a women-
of-color-led reproductive justice movement. We outline our vision,
the Reproductive Justice Agenda, as well as our actions to trans-
late this vision, so that we may continue moving forward to gain
reproductive justice.
R e p r o d u c t i v e H e a l t h , R e p r o d u c t i v e R i g h t s , R e p r o d u c t i v e J u s t i c e
Because reproductive oppression affects women’s lives in multiple
ways, a multi-dimensional approach is needed to fight this
exploitation and advance the well-being of women and girls.
There are three main frameworks for fighting reproductive oppres-
sion: [1] Reproductive Health, [2] Reproductive Rights, and
[3] Reproductive Justice. Although the frameworks are distinct,
together they provide a complementary and comprehensive solu-
tion. The Reproductive Health framework emphasizes the very
necessary reproductive health services that women need. The
Reproductive Rights framework is based on universal legal protec-
tions for women, and sees these protections as rights. Issues that
were historically seen as private issues in the lives of women and
girls have been made public and mainstream. And the
Reproductive Justice framework stipulates that reproductive
oppression is a result of the intersections of multiple oppressions
and is inherently connected to the struggle for social justice and
human rights. This paper focuses on the Reproductive Justice
framework but will touch upon the Reproductive Health and
Reproductive Rights frameworks to provide context.
The terms reproductive health, reproductive rights and reproduc-
tive justice are used interchangeably though they are rooted in
different analyses, strategies, and constituencies, as we show
below. Our intention is to articulate and clarify the main differ-
ences so we can ensure that our strategies are aligned with our
problem definition and analysis, gain more precision about where
our change efforts are situated, and work together more innova-
tively and synergistically at the nexus points. Consequently, all
three frameworks are imperative; by itself, a single one cannot
achieve the goal of ending reproductive oppression. Ultimately,
as in any movement, all three components of service, advocacy
and organizing are crucial to advancing the movement.
FOUNDED IN 1989, ASIAN COMMUNITIES FOR REPRODUCTIVE JUSTICE [ACRJ] HAS BEEN AT THE FOREFRONT
of building a Reproductive Justice Movement that places the reproductive health and rights of Asian
women and girls within a social justice framework. We are committed, as part of the Reproductive
Justice Movement, to exploring and articulating the intersection of racism, sexism, xenophobia,
heterosexism, and class oppression in women's lives. ACRJ is a founding member of the SisterSong
Women of Color Reproductive Health Collective, which uses the Reproductive Justice framework as
its central organizing strategy in the protection of women’s human rights in resistance to reproductive
oppression.
1
“I got to express my feelings about political and
educational issues…we were taught how to protest and
speak our minds in a positive way. I developed
confidence and I was happy that there were people like
me that actually cared about the world and fighting
against unjust issues. I was shy, but brave because I had
a lot of support and inspiration.” ACRJ YOUTH ACTIVIST
r e p r o d u c t i v e h e a lt h The Reproductive Health framework is a service delivery model for addressing the reproductive health needs of women. The central theme of this framework is that health disparities and inequalities can be ameliorated by the creation and development of progressive health care clinics and agencies that will ensure women have access to a full range of reproductive health services and are empowered to understand their health care needs. The focus is on providing services for historically marginal- ized communities through the creation of reproductive health clinics that provide low or no-cost care as well as culturally competent services. The problem in under- served communities is a lack of access not only to repro- ductive health services, but also to all health care. For many women, reproductive health care is their first and perhaps only encounter with the health care system.
u Analysis of the Problem The lack of access to reproductive health services for women, and health care in general, is seen as a lack of information, a lack of accu- rate health data, or a lack of available services.
v Strategy Based on this analysis, strategies for change tend to focus on improving and expanding services, research, and access, particularly prevention and cultur- al competency in communities of color. Work in Reproductive Health often consists of providing health services and public health education with an emphasis on reproductive tract infection (RTI) and sexually transmit- ted disease (STD) prevention. It also includes compre- hensive sex education, access to effective contraception, abor tion ser vices and counseling, family planning, HIV/AIDS prevention and treatment, and cancer preven- tion and treatment.
w Constituents Patients in need of services and/or education.
x Key Players Are Providers Those who work as, or are allied with, medical professionals, community and public health educators, health researchers, and health service providers.
y Challenges and Limitations As services and education are offered on an individual level, the root causes of health disparities are not addressed. In addition, the focus on individual women can be resource-intensive without leading to long-term change. Finally, this model is limited by inherent access issues because different women have different levels of access to these services and education.
r e p r o d u c t i v e r i g h t s The Reproductive Rights framework is a legal and advoca- cy-based model that serves to protect an individual woman’s legal right to reproductive health care services with a focus on keeping abortion legal and increasing access to family planning services.Groups fight for a woman’s “right to choose” and “right to privacy” through various legal, advocacy, and political means. Two main components of the strategy are to legally contest dam- aging legislation and advocate or influence public poli- cies that protect reproductive choice. For instance, many Reproductive Rights advocates opposed the popular 2004 Violence Against Unborn Children’s Act because it estab- lished a precedent of fetal personhood that can eventual- ly be used to overturn existing laws protecting abortion rights. A subset of Reproductive Rights is Reproductive Freedom, which was coined by activists in the pro-choice movement and popularized by the “Hands Off My Body” campaign. Though Reproductive Freedom was a call for the government to decrease restrictions on abortion, the constraints of this framing made it difficult to include issues and concerns of poor women, women of color, queer women and transgendered individuals, and women with disabilities.
u Analysis of the Problem The lack of legal protection, laws, or enforcement of laws that protect an individual woman’s legal right to reproductive health care services. The fight is centered on protecting the reproductive rights of individuals, such as a woman’s right to privacy, her right to make choices, her right to be free from dis- crimination, her right to access services, and her actual access to social resources.
v Strategy The primary strategy for organizations who work from this framework is legal, legislative, and/or administrative advocacy at the state and federal level. Legal strategies focus on utilizing the courts to protect and prevent erosion of reproductive rights. Advocacy focuses on legislation and policy to both defend existing rights as well as create new laws that promote reproduc- tive rights. Typically statewide coalitions and alliances are built in this model – alliances of women’s groups, civil rights groups, and health policy and advocacy groups.
w Constituents Women are organized and urged to participate actively in the political process. They are organized as voters and encouraged to express their opinions through voting for political representatives and calling or lobbying their members of Congress or State Legislatures.
x Key Players Are Advocates Those who work as, or are allied with, advocates, legal experts, policymakers, and elected officials.
y Challenges and Limitations The limitations of this framework are twofold. First, as Jael Silliman writes, “This conception of choice is rooted in the neoliberal tra- dition that locates individual rights at its core, and treats the individual’s control over her body as central to liberty and freedom. This emphasis on individual choice, howev- er, obscures the social context in which individuals make choices, and discounts the ways in which the state regu- lates populations, disciplines individual bodies, and exer- cises control over sexuality, gender, and reproduction.” 1
And second, the core strategy of calling for women to exercise their voting rights and call or email their elected officials assumes a level of knowledge, access to elected officials, and belief in the effectiveness of the political system that women who are marginalized by immigration status, age, class, and race often do not have.
r e p r o d u c t i v e j u s t i c e The Reproductive Justice framework is rooted in the recognition of the histories of reproductive oppression and abuse in all communities, and in the case of ACRJ, in the histories of Asian communities and other communi- ties of color. This framework uses a model grounded in organizing women and girls to change structural power inequalities. The central theme of the Reproductive Justice framework is a focus on the control and exploita- tion of women’s bodies, sexuality and reproduction as an effective strategy of controlling women and communi- ties, particularly those of color. Controlling a woman’s body controls her life, her options and her potential. Historically and currently, a woman’s lack of power and self-determination is mediated through the multiple oppressions of race, class, gender, sexuality, ability, age and immigration status. Thus, controlling individual women becomes a strategic pathway to regulating entire communities. To realize a vision of the complete health and well being of all women and girls, a Reproductive Justice framework also engages with issues such as sex traf f icking, youth empowerment, family unif ication, educational justice, unsafe working conditions, domestic violence, discrimination of queer and transgendered communities, immigrant rights, environmental justice, and globalization. u Analysis of the Problem Women’s ability to exercise self-determination—including in their reproductive lives—is impacted by power inequities inherent in our society’s institutions, environment, economics, and culture. The analysis of the problems, strategies and envisioned solutions must be comprehensive and focus on a host of interconnecting social justice and human rights issues that affect women’s bodies, sexuality, and reproduction. v Strategy As this framework highlights the intersection of multiple systems of oppression, key strategies include: [AA] Supporting the leadership and power of the most excluded groups of women and girls within a culturally- relevant context that recognizes and addresses the multi-layered impact of oppression on their lives; [BB] Developing the leadership and building the social, politi- cal and economic power of low-income women of color and their communities so they can survive and thrive; [CC] Advancing a concrete agenda that wins real individual, community, institutional and societal changes for poor women and girls of color; [DD] Integrating grassroots issues and constituencies that are multi-racial, multi- generational and multi-class into the national policy arena; and [EE] Building a network of allied social justice and human rights organizations who who integrate a reproductive justice analysis and agenda into their work. w Constituents Women and their communities, organized to lead and participate in the struggle against not only reproductive oppression, but also other insepa- rable injustices present in their lives. x Key Players Are Organizers Those who work as, or are allied with, reproductive rights, reproductive health, social justice and other justice organizations. y Challenges and Limitations In working to change power relations, assumptions, and values, this framework challenges people personally and politically by asking them to adopt a world view that is diametrically opposed to the status quo. It implies taking risks, including taking direct action against those in power. Working long-term to change these kinds of power relationships is resource intensive, requiring constituents and members to have an in-depth and comprehensive analysis as well as staying power. As campaign-based organizing can be a lengthy process with campaigns lasting several years, the immedi- ate and short-term needs of constituents and members, such as challenges around employment, f inancial resources, health, and education, can be difficult to meet.
1 Silliman, J and Bhattacharjee, A (eds). Policing the National Body, Cambridge, MA: South End Press, 2002, pp. x-xi.
Reproduction encompasses
both the biological and
social processes related to
conception, birth, nurturing and raising
of children as participants in society.
Social reproduction
is the reproduction of society, which
includes the reproduction of
roles such as race, class,
gender roles, etc.
framework 1 framework 2 framework 3
2
H i s t o r i c a l C o n t e x t
The fight for women's liberation has been inextricably linked to
control over reproduction, nevertheless birth control has also
been used as a tool of women’s oppression. For example, in the
early 20th century, the eugenics movement began to promote
policies that restricted reproduction of society's most marginal-
ized communities, and adopted access to birth control to achieve
population control. Thus birth control was used to exert further
control over individuals and communities who were already facing
multiple oppressions. As movements for women's rights have
evolved, the dialogue concerning reproduction control has also
changed dramatically over time, resulting in the creation of the
Reproductive Health, Reproductive Rights, and Reproductive
Justice frameworks.
Though highly problematic from an anti-racist and anti-imperialist
perspective, population control discourse was politically success-
ful in increasing the visibility and acceptance of birth control in
the first half of the 20th century. At the same time, African
American women who made connections between race, class, and
gender joined the fight for birth control in the 1920s as much
from Black women’s experience as enslaved breeders for the accu-
mulation of wealth of White slave-owners as for realization of gen-
der empowerment. In the 1960s, the federal government began
funding family planning both in the United States and interna-
tionally as part of a strategy for population control, rather than
women’s empowerment. Population control has been defined as
externally imposed efforts by governments, corporations or pri-
vate agencies to control (by increasing or limiting) population
growth, usually by controlling women’s reproduction and fertility.2
Other forms of population control include immigration restric-
tions, selective population movement or dispersal, incarceration,
and various forms of discrimination.
As an outgrowth of the civil rights and women’s liberation move-
ments, the women’s health movement of the 1970s established
women-centered health clinics throughout the country to provide
access to family planning and reproductive health services. There
was a strong focus on abortion rights, culminating with the land-
mark 1973 decision in Roe v. Wade that legalized abortion nation-
wide. The Roe v. Wade decision struck down state laws that had
previously outlawed abortion, making the procedure more accessi-
ble and safe, and set a precedent for numerous other subsequent
cases. Explaining the link between social and economic participa-
tion and reproduction, the Supreme Court noted in 1992 that "the
ability of women to participate equally in the economic and social
life of the Nation has been facilitated by their ability to control
their reproductive lives (Planned Parenthood of Southeastern
Pennsylvania v. Casey, 1992).” 3
The Reproductive Rights framework came to champion women's
entitlement to a full range of rights related to reproduction,
reproductive freedom, and reproductive health. However, by the
1990s, there was wide recognition by women’s advocates that an
approach combining resistance to population control and advoca-
cy for abortion rights was too narrow to achieve the larger goal of
women's empowerment.
o p p r e s s i o n a n d r e p r o d u c t i o n
Both the Reproductive Health and Reproductive Rights frame-
works largely focus on individual rights and solutions, rather than
structural societal changes. Many of the most oppressed women at
the margins of the movements for reproductive autonomy have
championed the need for greater analysis of oppression in discus-
sions of reproduction. The existing discourse and focus of the
reproductive health and rights agenda rarely includes an analysis
of the effect of intersecting forms of oppression. When racial
analysis has been inserted into mainstream discourse, it has often
used a Black and White framework, without integrating the racial
oppression experienced by Asian and Pacific Islander (API),
Latina, Indigenous, or Arab American and Middle Eastern women.
The focus on and orientation towards individual rights and indi-
vidual responsibility, as they relate to articulation of reproductive
health and women's choice, reinforce the broader systems of
political, economic, and cultural hegemony that privilege and
maintain racial stratification in the United States, primarily
through White supremacy.
2 Ross L. “Revisions to the ACRJ Reproductive Justice paper.” E-mail to the author. 3 August 2005. 3 “Roe v. Wade: Its History and Impact.” Fact sheet by Planned Parenthood Federation of America. 3 October 2005
http://www.plannedparenthood.org/pp2/portal/files/portal/medicalinfo/abortion/fact-roe-wade-history.xml
“If I could describe myself in one word, it would be
courageous.” ACRJ YOUTH ACTIVIST
Reproductive oppression
is the controlling and exploiting
of women and girls through
our bodies, sexuality
and reproduction
(both biological and social)
by families, communities,
institutions and society.
3
Examples of reproductive injustice abound in the United States
and in the world. The control of Black women’s fertility during
slavery as well as via current welfare reform policies is key to
racial stigmatization and economic oppression of the Black
community. Historical sterilization abuse in Native American
communities was a part of a genocidal strategy of decimation.
Similarly, women with disabilities have been targeted for coerced
sterilization and fertility control, and Puerto Rican women were
also sterilized in large numbers. Additionally, contraceptives such
as Depo Provera and Norplant, which are potentially dangerous if
used over the long term, are systematically pushed on poor and
young women of color in the United States with an eye to limiting
poor populations. In each case, an imperialist agenda to secure
land, resources, and women’s labor has led to control over the
bodies of women of color.
Repeatedly, economic, social, and institutional policies have
severely affected women's choice to determine their reproduc-
tion. The regulation and control of API women and girls’ bodies,
sexuality and reproduction have played a key role in colonization
and racial oppression, and in controlling API communities in the
U.S. Historically, the nation's immigrant exclusion laws targeted
people from Asia and served as a form of population control. As
early as 1870, in an attempt to limit the size of the Asian popula-
tion in California, the state legislature passed a law that prohibit-
ed the immigration of Asian women, and in 1875 the United States
Congress passed the Page Law to forbid entry of mostly “Chinese,
Japanese and Mongolian” women. Current policies restricting
immigration and access to social services also significantly pre-
vent API women from truly being able to make reproductive choic-
es. For example, limited English-speaking API women accessing
welfare payments often do not have a complete picture of their
rights and status, and are unable to advocate for themselves and
navigate the complex system because of the lack of sufficient
interpreters. Moreover, though the use of DDT is banned in the
continental U.S., over the past 40 years U.S. corporations have
dumped vast amounts of agricultural chemicals including DDT in
Hawaii, and mounting evidence suggests that these pesticides
play a role in breast cancer development. Today, native Hawaiians
have one of the highest breast cancer rates in the world.4
Women of color, including API women, do not face oppression
purely due to their gender, but instead experience oppression in
many forms. The long history of colonization and Western imperi-
alism have institutionalized racism, xenophobia, heterosexism,
and class oppression in this society, so that policies supposedly
designed to serve all women often function to perpetuate injus-
tice for women of color. For instance, immigrant or refugee API
women with limited English proficiency have little power to nego-
tiate interactions with reproductive health providers.
In addition to race and class discrimination, many API queer
women and transgendered people face homophobia that deters
them from accessing reproductive care. Reproductive health
programs and service providers often focus on women as individu-
als and may adopt a paternalistic approach that oppresses and
regulates women's reproduction. Although there is, currently, a
movement to incorporate cultural competence and language
access in health services, these interventions usually do not
address power differential in the patient-provider relationship.
They do not empower API women to be partners with medical
practitioners. Also they usually do not incorporate or respect tra-
ditional health practices that API women value such as homeo-
pathic medicine, herbal healing, or acupuncture. Without an
intersectional analysis of the impact of multiple forms of oppres-
sion, the reproductive health and rights movements’ focus on
individual health and choice poses challenges and limitations as a
framework to achieve reproductive justice for API women.
As Dorothy Roberts eloquently stated, “Reproduction is not just a
matter of individual choice. Reproductive health policy affects the
status of entire groups. It reflects which people are valued in our
society; who is deemed worthy to bear children and capable of
making decisions for themselves. Reproductive decisions are made
within a social context, including inequalities of wealth and
power.” 5 The focus on individualism neglects the broader societal
context in which API women live.
API women’s reproductive options and ability to control their
reproductive lives are limited in many ways. For refugee women
who have survived war in their home countries, their oppression is
often enacted on their bodies. During war, a woman’s body is
treated synonymously to the land: as a battleground where women
4 Miller BA, Kolonel LN, Bernstein L, Young, Jr. JL, Swanson GM, West D, Key CR, Liff JM, Glover CS, Alexander GA, et al. (eds). Racial/Ethnic Patterns of Cancer in the United States 1988-1992. National Cancer Institute. NIH Pub. No. 96-4104. 1996.
Reproductive justice,
as defined by ACRJ,
will be achieved
when women and girls have
the economic, social and political
power and resources
to make healthy decisions
about our bodies, sexuality
and reproduction
for ourselves, our families and
our communities
in all areas of our lives.
5 Roberts D. "Race, Reproduction, and the Meaning of Liberty: Building A Social Justice Vision of Reproductive Freedom." Delivered 18 April 2000 at a Public Forum Presented by The Othmer Institute. 18 August 2005 http://www.othmerinstitute.org/reports/report1.html.
4
and resources are exploited, and as a site where victors establish
dominance by reproducing themselves in the population through
women's bodies, as well as reproducing their values, culture,
religion, language, and traditions. Secondly, in addition to being
more susceptible to HIV/AIDS, RTIs, STDs and other health risks
and having limited accessibility to health care, women trafficked
from poor countries such as Thailand, Cambodia, and the
Philippines are more vulnerable to physical abuse, suffer a range
of mental and emotional trauma, lack access to language tools
and legal help, and are trapped in a state of powerlessness. These
are two of many concrete examples of how reproductive justice is
central to API women’s struggle for self-determination.
In focusing on a narrow abortion agenda, or even a broader repro-
ductive health agenda, the Reproductive Health and Reproductive
Rights frameworks may neglect critical circumstances that many
API women face. API women experiencing poverty, linguistic
isolation, domestic violence, human trafficking, and harsh work-
ing conditions are focused on survival and do not have the luxury
of “choice” because many options are not available to them. In
addition, the focus on individualism does not speak to the experi-
ences of API women. Numerous cultures across Asia promote soci-
etal, community, and family decision-making that is incompatible
with individualistic reproductive rights. API women often have to
navigate social taboos and traditions within their own cultures in
making reproductive decisions, so that “choice” is not necessarily
theirs to make.
c r e a t i o n o f t h e w o m e n o f c o l o r r e p r o d u c t i v e j u s t i c e m o v e m e n t
In resistance to reproductive oppression, women of color in the
United States and internationally have long advocated for a
broader reproductive justice analysis that addresses race, class,
gender, sexuality, ability, age, and immigration status.
In many countries, the term “sexual health and rights” is used to
describe an analogous constellation of reproductive justice issues.
Issues of sexual health and rights include: sexual violence against
women; comprehensive sex education; marriage rights, including
same-sex marriage; and sexual torture during war. Current gov-
ernment policies throughout the world attempt to control sexual
relations among people.6 Sexual health and rights advocates
proclaim that humans are sexual by nature7 and thereby make the
connection between sexual rights and human rights. According to
the Platform for Action of the World Conference on Women in
Beijing, “the human rights of women include their right to have
control over and decide freely and responsibly matters related to
their sexuality.” 8 Activists call for government to ensure that
“public and economic policies, and public services and education,
prevent discrimination and abuse in relations to sexuality and
promote sexual health and rights.” 9
Although some historians have tended to erase the contributions
of women of color, we have been actively organizing for reproduc-
tive justice for countless years. In the past two decades, this race
and ethnicity-based organizing has gained visibility and increas-
ing success. The National Black Women's Health Project was
formed in 1984 as the first women-of-color reproductive health
organization, building a foundation for women-of-color organiza-
tions representing the major ethnic groups. The Mother’s Milk
Project on the Akwesasne Reservation in New York was founded in
1985, followed by the National Latina Health Organization in
1986. The Native American Women’s Health Education and
Resource Center was launched in 1988, and Asian Pacific Islanders
for Choice (forerunner to ACRJ) in 1989. Since then, women of
color have organized numerous conferences, established myriad
organizations, collaborated with each other, and formed alliances
with civil rights and women's rights organizations.
In November 1994, a Black women’s caucus first coined the term
“reproductive justice,” naming themselves Women of African
Descent for Reproductive Justice at the Illinois Pro-Choice Alliance
Conference. According to Loretta Ross, one of the caucus partici-
pants, “We were dissatisfied with the pro-choice language, feeling
that it did not adequately encompass our twinned goals: To pro-
tect the right to have – and to not have – children. Nor did the
language of choice accurately portray the many barriers African
American women faced when trying to make reproductive deci-
sions. Perhaps because we were just returning from the
International Conference on Population and Development in
Cairo, Egypt in 1994, we began exploring the use of the human
rights framework in our reproductive rights activism in the United
States, as many grassroots activists do globally. We sought a way
to partner reproductive rights to social justice and came up with
the term ‘reproductive justice’.” 10
A few years later, the SisterSong Women of Color Reproductive
Health Collective was formed by 16 women of color organizations
in 1997, with a focus on grassroots mobilization and public policy.
SisterSong began popularizing the term reproductive justice
based on the human rights framework. In April 2004, SisterSong
coordinated women-of-color groups to mobilize thousands of
women in a “Women of Color for Reproductive Justice” contingent
as part of the March for Women's Lives in Washington, DC. And in
October 2004, the groundbreaking book Undivided Rights (South
End Press) provided a comprehensive history of women-of-color
organizing around reproductive health, reproductive rights, and
reproductive justice issues, documenting the vital contributions
of women of color which hitherto had been largely unreported.
10 Ross, op. cit.6 Berer M. Sexuality, Rights and Social Justice. Reproductive Health Matters, 2004, 12(23): 6-11. 7 Ibid 8 Ibid 9 Ibid5
“When I think about how others struggled to give us
rights and privileges now, it means a lot to me
and I’m very thankful.” ACRJ YOUTH ACTIVIST
A t t a c k i n g R e p r o d u c t i v e O p p r e s s i o n : A C R J ’ s R e p r o d u c t i v e J u s t i c e A g e n d a At ACRJ we work towards a vision of the world where Asian women
and girls have self-determination, power and resources to make
their own decisions. Our vision requires that women, girls and
their communities have all they need to thrive, creating the envi-
ronment for personal, collective, and societal transformation.
To advance our work we use three main strategies: Analysis,
Organizing, and Movement Building. Through our Reproductive
Justice Analysis work, we host discussion and strategy sessions to
deepen and broaden our analysis. We write and disseminate arti-
cles to build the base of the movement, and have developed a
Reproductive Justice Agenda that informs and directs our work.
Our Reproductive Justice Agenda illustrates our vision, solutions,
and guiding principles for attacking the root causes of reproduc-
tive oppression (see Table 1). In this Agenda we articulate our
analysis based on the lived experiences, issues, and research car-
ried out for and by Asian women and girls to develop a model that
addresses the nexus of systems of oppression based on gender,
race, class, sexuality, ability, age and immigration status.
Secondly, in our Organizing we use popular education and com-
munity-based participatory research to develop the leadership of
Asian women and girls to plan and lead campaigns to achieve
specific and measurable gains at the local and state level. For
instance, we worked in collaboration with environmental justice
groups to shut down a toxic medical waste incinerator here in
Oakland, California, and have been working to pass and enforce
state legislation that ensures comprehensive sex education in
public high schools. And finally, in our commitment to advancing
a Reproductive Justice Movement, we build and strengthen
women of color and mainstream alliances for reproductive justice.
We recognize the importance of broader inclusion and leadership
of the most excluded groups of women. These include low-income
women, queer women and transgendered individuals, women with
disabilities, young women, and immigrant and refugee women. We
believe that organized communities, particularly the most mar-
ginalized groups mentioned above, are key agents of change, and
focus on improving social conditions and changing power and
access to resources on all levels. Table 1 summarizes our approach.
“A political struggle that does not
have women at the heart of it, above it, below it, and
within it is no struggle at all.” ARUNDHATI ROY
6
P R O B L E M R E P R O D U C T I V E O P P R E S S I O N
• Systematic denial of women and girls’ self- determination and control over our bodies, and limiting our reproductive choices.
• Control and exploitation of women and girls through our bodies, sexuality and reproduction by families, communities, institutions and society.
• Impacts women and girls individually and as a group as well as our families and communities.
V I S I O N R E P R O D U C T I V E J U S T I C E
• Women and girls have the economic, social and political power and resources to make healthy decisions about our bodies, sexuality and reproduction for ourselves, our families and our communities in all areas of our lives.
• Women and girls, and our communities achieve complete physical, mental, spiritual, political, economic, and social well being.
• Women leaders and activists achieve self- determination and full human rights for women and girls.
S O L U T I O N A D VA N C I N G A R E P R O D U C T I V E J U S T I C E M O V E M E N T
• Developing the leadership and building the social, political and economic power of low- income women of color and their communities so they can survive and thrive.
• Advancing a concrete agenda that wins real individual, community, institutional and societal changes for poor women and girls of color.
• Integrating issues and constituencies that are multi-racial, multi-generational and multi-class in order to build a more powerful and relevant grassroots Movement.
• Building a network of allied social justice and human rights organizations who integrate a reproductive justice analysis and agenda into their work.
ROOT CAUSES O F R E P R O D U C T I V E O P P R E S S I O N
• The regulation of reproduction and exploitation of women’s bodies and labor is both a tool and a result of oppression based on the intersections of race, class, gender, sexuality, ability, age and immigration status.
• The control of women’s bodies, sexuality and reproduction is often connected to the regulation and control of communities of color.
Table 1. ACRJ’s Reproductive Jus tice Agenda
• Recognize and support the leadership and power of the most excluded groups of women and girls.
• Support the full expression of identity and sexuality.
• Build alliances across differences of race, class, gender, sexuality, ability, immigration status, age, and all other differences.
• Recognize and address the multi-layered impact of power and oppression, whether internalized or externalized.
G U I D I N G P R I N C I P L E S
ACRJ’s Reproductive Justice Agenda (RJA) places reproductive jus-
tice at the center of the most critical social and economic justice
issues facing our communities, such as ending violence against
women, workers rights, environmental justice, queer rights,
immigrant rights, and educational justice, which have major
implications for Asian women. For example, under conditions of
reproductive justice, we will live in homes free from sexual and
physical violence; we will live and work without fear of sexual
harassment; we will have safe work and home environments pro-
tected from corporate exploitation and environmental toxins; we
will be free from hatred due to sexual identity; we will be valued
for all the forms of work we do; we will earn equitable and livable
wages; we will eat healthy and affordable food; and we will have
comprehensive health care for ourselves and our families.
Moreover, the government and private institutions will support
our decisions whether or not to have a child and we will receive
the necessary support for our choices. In addition we will receive
an education that honors and teaches the contributions of
women, people of color, working class communities, and queer
and transgendered communities.
As illustrated in the RJA, women’s bodies, reproduction and sexu-
ality are often used as the excuse and the target for unequal
treatment in the attempt to control our communities. We believe
that by challenging patriarchal social relations and addressing the
intersection of racism, sexism, xenophobia, homophobia, and
class oppression within a women-of-color context, we will be able
to build the collective social, economic, and political power of all
women and girls to make decisions that protect and contribute to
our reproductive health and overall well-being. From this vision,
we have developed key strategies and projects that enable ACRJ to
have an impact on the grassroots, community, statewide, and
national levels. From the perspective of a Reproductive Justice
framework, the key problem is a lack of power, resources and
control. At ACRJ we organize to gain power, resources, and self-
determination in overcoming the multiple oppressions of race,
class, gender, sexuality, ability, age and immigration status.
Tr a n s l a t i n g V i s i o n i n t o A c t i o n : A C R J ’ s I m p a c t
Efforts to advance reproductive justice cannot be achieved by
vision and analysis alone. In our work with Asian women and girls
in California, we have translated our vision for reproductive justice
into specific gains at the local and state levels, which include the
following:
Developing New Leaders In line with our vision, we believe those who are directly impacted by reproductive oppression must
be at the forefront of leading and making change. Since 1998,
ACRJ has instituted a youth organizing program involving over
250 low-income, young Asian women across California. These
young women receive intensive leadership development, popular
education and organizing trainings to become effective leaders
and powerful organizers for reproductive justice and social jus-
tice. The development of a cadre of underserved girls from immi-
grant and refugee families, comprehensively trained on essential
issues of reproductive health and their connection to poverty,
education, and employment represents a real first not only for the
local community, but also for this portion of the national Asian
population.
Campaigning and Advancing the Reproductive Justice of Asian Women and Girls By organizing for specific gains, youth activists have won campaigns protecting the reproductive health of Asian
women. For example, the Healthy Communities Campaign, in
collaboration with environmental justice groups, increased the
visibility of reproductive health issues related to toxic emissions
and culminated in victory when one of the most toxic medical
waste incinerators in the nation was forced to close in 2002.
Intersectional analysis
is the linking of different
systems of oppression and power.
These intersections can occur
at different levels –
individual, interpersonal,
family, community, and
institutional.
F igure 1. Intersectionality of Reproductive Jus tice wit h Social Jus tice Issues
7
Educating Community Leaders ACRJ youth organizers created the Reproductive Freedom Tour of Oakland and Guidebook to
educate researchers, community members, and policy makers on
the issues impacting their community. The tour focuses on repro-
ductive and social justice issues such as welfare, educational
justice and gentrification.
Addressing the Language Needs of Immigrant and Refugee Asian Communities ACRJ youth leaders conducted surveys in Mien, Cambodian, Cantonese, and English to assess the impact of
welfare reform and the true needs of community members, and
discovered the biggest barrier facing immigrant women was the
lack of interpreters at the Department of Social Services. This
effort culminated in the first-ever Southeast Asian community
forum in which ACRJ members educated staff at the Department
of Social Services about the need for appropriate interpreters and
translation for clients.
Advocating for Comprehensive Sexuality Education in California Public Schools Over the past few years, ACRJ has partnered with the ACLU of Northern California to pass and enforce SB 71, which
simplifies sex education guidelines and ensures that public school
sexuality education is comprehensive, accurate and free of bias.
ACRJ has been conducting youth and adult trainings across
California to ensure that communities are aware of the new law
and have the tools to hold schools accountable as needed.
Researching Toxins in Personal Care Products Asian women and girls are affected by personal care product chemicals in a myriad
of ways – through personal use promoted by marketing trends,
through occupational exposures that are facilitated by poverty
and immigrant status, and through hazardous exposures and the
lack of access to health care. In response to the wide body of evi-
dence that shows the health hazards of beauty products, ACRJ has
established POLISH, the Participatory Research, Organizing, and
Leadership Initiative for Safety and Health. POLISH participants
are currently researching the degree to which Asian women and
girls and the many Asian women who are nail salon workers are
exposed to toxic chemicals through both personal use and profes-
sional occupation. The results will fill major gaps in information,
and the project will increase Asian girls’ and women’s capacity to
identify reproductive justice problems and intervene in their com-
munity’s health status.
The ultimate goal of our work is to build self-determination for
individuals and communities. For Reproductive Justice to be real,
change needs to be made at all levels of society. We believe that
translating the vision of our Reproductive Justice Agenda into
action will bring about change on the individual, community,
institutional, and societal levels in order to transform our world:
u An individual woman or girl will acquire skills as well as
demonstrate leadership and commitment to furthering reproduc-
tive justice;
v A community will change its attitudes and behaviors to support
women and girls as community leaders;
w An institution, such as a church, school/school district, busi-
ness/workplace, or legislative body, will make changes to stop
reproductive oppression and protect reproductive justice for
women and girls; and
x Women and girls will gain complete self-determination and all
forms of oppression are ended.
F igure 2. Intersectionality of ACRJ’s Reproductive Jus tice Work wit h Social Jus tice Issues F igure 3. ACRJ’s Levels of Social Change
“Reproductive Justice means learning about your body,
your talents, your strengths, and empowering yourself.” ACRJ YOUTH ACTIVIST
8
W h e r e D o W e G o F r o m H e r e ?
We are currently in a time of increasing instability, violence and
consolidation of state and corporate power in the United States
and around the world. These conditions provide fertile ground for
an escalated assault on women’s reproductive justice. The war
against Iraq, vacancies on the Supreme Court, cuts to public
assistance, the continued erosion of abortion access and repro-
ductive health care, the passage of anti-immigrant and anti-youth
legislation, and weakening environmental policies that allow
toxins to contaminate our bodies and food supplies exemplify the
strength and comprehensiveness of these attacks on the self-
determination of women and our communities.
Moreover, mainstream reproductive rights leaders acknowledge
that the movement is shrinking. By integrating the reproductive
justice needs of our communities at local, state, national and
international levels, we will be able to activate and mobilize larger
constituencies. If our movement is fresh and relevant, it will flour-
ish rather than diminish.
By organizing our communities, we create spaces for women and
girls to be active and full agents of change in their lives.
Reproductive Justice empowers women and girls to fully come into
their strong, talented selves by creating environments in which
they feel loved, safe, powerful, and confident. Reproductive
Justice builds community among women and girls and creates
opportunities for rich discussion where they can work out the
conflicting messages they get about complex issues such as
identity, sexuality and power.
We need a movement with a vision of addressing women wholly
and comprehensively so that we do not single out pieces of a
woman’s body but see their bodies as whole. Similarly, we cannot
focus solely on one aspect of a woman’s life, whether at work, at
school, at home, or on the streets. We need to understand how
reproductive oppression may exist in all arenas of her life, and
recognize that she may have to walk through all of these arenas
in a single day.
Reproductive Justice aims to invigorate the movement by:
• Addressing the needs and issues of a diverse group of women
while acknowledging the layers of oppression that our communi-
ties face, particularly those with little access to power and
resources;
• Encouraging women and girls to be active agents of change and
realize their full potential;
• Creating opportunities for new leaders to emerge within our
communities and increase the sustainability of our movement;
• Integrating the needs of grassroots communities into policy and
advocacy efforts;
• Infusing the movement with creativity, innovation, and vision;
• Providing opportunities to work at the intersection of many
social justice issues while forging cross-sector relationships;
and
• Connecting the local to the global by integrating the human
rights framework.
Reproductive Justice calls for integrated analysis, holistic vision
and comprehensive strategies that push against the structural
and societal conditions that control our communities by regulat-
ing our bodies, sexuality, and reproduction. This is the time
to come together across separate identities, issue areas, and
change efforts to achieve the vision where all women, girls and
communities will truly transform our world.
“It is time to speak your Truth. Create your community.
And do not look outside yourself for the leader. We are
the ones we have been waiting for” HOPI ELDER
9
H e l p U s A d v a n c e R e p r o d u c t i v e J u s t i c e
Here are several ways you can help build a shared vision of reproductive justice to guide substantive work in our com- munities and beyond. These suggestions serve simply as starting points to inspire your own activism and as oppor- tunities for advancing our movement.
Reproductive Rights and Parental Consent Laws
Few would disagree that it is better when young people communicate with their parents in deciding whether or not to have an abortion. By mandating parental notifica- tion, however, some teenagers may choose to have unsafe and illegal abortions, delay seeking medical care, or trav- el out of state if they are forced to either face a judge or unsupportive parents, thus greatly increasing their phys- ical and emotional health risks.
w h a t y o u c a n d o
•Organize and educate women, girls, and their families not only about access to abortion for young women, but also its connection to other reproductive justice and social justice issues. •Strengthen alliances and coalitions with social justice groups who traditionally do not work in reproductive justice but whose constituencies are or will be deeply impacted by the issue. By working with community and in coalition, build a strong base with long-term capacity, leadership and electoral power. •In partnership with state coalitions such as the Campaign for Teen Safety in California (www.noonproposition73.org), advocate for upholding reproductive rights for women of all ages and preserving safety for teenagers. •Ensure the health care system provides resources, infor- mation, and quality care to women and teenagers about their reproductive choices.
Queer & Transgender Rights and Health Care Bias
For queer women and transgendered individuals, access- ing health care is often limited by bias and discrimination in the medical community, delayed medical care, and a lack of research on health care needs and risks. Queer women and transgendered people must have the ability to exercise self-determination over their identity and their sexual lives as well as full civil rights, free from discrimi- nation and harassment.
w h a t y o u c a n d o
•Organize efforts to incorporate queer and trans-friendly health care programs into mainstream hospitals and clin- ics, public agencies and community organizations in order to create a safer and more responsive environment. •Support enforcement of California’s new law that bans denial of insurance coverage based on transgender status and adds gender and gender identity to existing anti-dis- crimination provisions in state laws regulating insurance companies and health care plans (AB 1586). •Advocate for Marriage Equality, the legal recognition of same-sex marriage which affords full federal and state benefits. •Oppose any federal and state efforts that write discrim- ination into the constitution.
Educational Justice and Comprehensive Sexuality Education
Medically accurate, age-appropriate, comprehensive sex- uality education is essential for the healthy development of young people and their relationships with each other. Research shows that by combining an abstinence message with information about condoms and contraception as
well as communication and refusal skills, comprehensive sex education is effective at improving young peoples' understanding of themselves and their health, and pre- venting teen pregnancy and STI transmission. 1
w h a t y o u c a n d o
•Mobilize parents, family members, and community mem- bers in your neighborhood to research and develop a "Report Card" that assesses the state of sexuality educa- tion in your local school district. •Hold school boards and school administrators account- able to providing comprehensive sex education in public schools. •Support state and federal legislation that mandates, enforces, and provides resources for comprehensive sexu- ality education, such as the federal Responsible Education About Life Act (REAL Act, SB 368) and the Family Life Education Act (HR 768).
Environmental Justice and Personal Care Products
Women and girls are exposed to hazardous chemicals on a consumer level through their personal care products, and on an occupational level through work in the beauty care industry. Lacking FDA regulation, only 11% of over 10,500 ingredients in personal care products have been tested for safety thus far.2 Some of the toxins in beauty products are endocrine disruptors, which interfere with the normal functioning of hormones, and all are associated with reproductive, developmental and other health problems.
w h a t y o u c a n d o
•Pressure the Food and Drug Administration to regulate personal care products, and the personal care products industry to manufacture products without toxins. For instance, the Campaign for Safe Cosmetics works to mandate the phasing out of chemicals that are known or suspected to cause cancer, genetic mutation or reproduc- tive harm (www.safecosmetics.org). African American Women Evolving’s Healthy Vagina Campaign informs women of the potential risks associated with douching and advocates for stricter regulation of companies that manufacture feminine hygiene products (www.aaweonline.org/TheHVCPamphlet.pdf). •Organize and educate women consumers and workers about the health hazards of toxins in personal care products. •Support enforcement of California’s new law that calls for full disclosure of ingredients known to cause cancer or birth defects and investigation of the health impacts of these chemicals (SB 484). •Advocate for legislative proposals that will ban these toxic chemicals entirely in cosmetics and other personal care products.
Workers Rights and Undocumented Women Laborers
Undocumented women laborers in the electronics indus- try, garment industry, and domestic services industry are burdened with low wages, little (if any) access to health care and substandard working conditions. Moreover, these immigrant and refugee workers are vulnerable to abuse and exploitation from employers who would deny them the few rights they might have.
w h a t y o u c a n d o
•Develop efforts to establish workers centers or worker cooperatives in your local community that provide a safe and central place for workers to receive training, support, referrals, and resources. •Encourage unions to be increasingly supportive of their growing immigrant base and more active in fighting for immigrant and refugee workers rights.
•Join an organization that leads campaigns to protect the rights of undocumented women workers, such as CAAAV Organizing Asian Communities, which organizes across immigrant, working-class, and poor Asian communities (www.caaav.org), Sweatshop Watch, which works to elim- inate exploitation and inhumane conditions that charac- terize sweatshops (www.sweatshopwatch.org), and Asian Immigrant Women Advocates, which empowers low- income, immigrant women workers to make change in their workplaces, communities and broader society (www.aiwa.org). •Support legislative efforts to advance workers rights for undocumented women laborers.
Ending Violence Against Women and Human Trafficking
The lucrative industry of trafficking women and children for the purposes of manual and/or sexual labor is finally being revealed as the crisis it is. The fight against traf- ficking, and consequent indentured servitude and prosti- tution, involves empowering those whose age, gender, poverty, and national origin make them a target for exploitation as well as addressing the structural causes which allow it to flourish.
w h a t y o u c a n d o
•Expose the hidden industr y of human traf f icking through increased awareness, knowledge, and research. •Join campaigns that work to fight trafficking, such as GABRIELA Network’s Purple Rose Campaign, which works to create an international movement against the sex traf- f icking of Filipina women and their children (www.gabnet.org). •Organize a coalition of service providers, public health workers, traff icked women and girls, and community members to inform, educate and mobilize people in your area. •Lobby for local, state, and federal regulations and enforcement that prevent women and girls from being trafficked and prosecute traffickers, including implemen- tation of two California laws (AB 22 and SB 180).
Immigrant Rights and Exclusion & Discrimination
Xenophobic laws and attitudes in the United States mean that immigrant activists and communities are continually fighting a reactionary battle. The specter of immigration raids, vigilante groups, detentions, deportations and family separations can prevent women and families from seeking needed social services to ensure that their com- munities continue to grow and thrive.
w h a t y o u c a n d o
•Support immigrant and refugee leaders to lead national debates and counter xenophobic public attitudes. •Build the base of immigrants, refugees and allies who organize on the local and national levels to protect and expand the rights of immigrants, regardless of immigration status. •Sign up for the Immigrant Rights News sponsored by the National Network for Immigrant and Refugee Rights, which works to promote a just immigration and refugee policy and defend and expand the immigrant and refugee rights in the U.S. (www.nnirr.org). •Fight legislative and ballot proposals that aim to perpetu- ate discrimination and exclusion against immigrant communities. •Support comprehensive immigration reform that will reunite families, protect workers, and bring stability to the lives of immigrants and refugees, such as the Save Amer ica Comprehensive Immigration Act of 2005 (HR 2092).
1 Burlingame P. “Sex Education in California Public Schools.” Released August 2003 by ACLU of Northern California. 3 October 2005 http://aclunc.org/reproductive-rights/030903-report.pdf.
2 “Skin Deep Executive Summary.” Study released June 2004 by Environmental Working Group. 3 October 2005 http://www.ewg.org/reports/skindeep/report/executive_summary.php
10
Asian Communities for Reproductive Justice
(formerly Asians & Pacific Islanders for Reproductive Health)
310 8th Street, Suite 102
Oakland, California 94607
P: 510.434.7900
F: 510.434.7902
www.reproductivejustice.org
for our bodies, our lives, our families, our world
SisterSong Women of Color Reproductive Health Collective
PO Box 311020
Atlanta, Georgia 31131
P: 404.344.9629
F: 404.346.7517
Email: [email protected]
www.SisterSong.net
Doing Collectively What We Cannot Do Individually
The SisterSong Women of Color Reproductive Health Collective is made up of local, regional and national grassroots organizations and individuals representing the primary ethnic populations/ indigenous nations in the country: Native American/Indigenous, Latina, Black/African American, Asian/Pacific Islander, and Middle Eastern/Arab American. The Collective was formed with the shared recognition that as women of color we have the right and responsibility to represent ourselves and our communities.
SisterSong is committed to educating women of color on Reproductive and Sexual Health and Rights, and working towards the access of health services, information and resources that are culturally and linguistically appropriate through the integration of the disciplines of community organizing, Self-Help and human rights education.
© Copyright 2005 by Asian Communities for Reproductive Justice. All Rights Reserved.
Acknowledgements
We are deeply grateful to the SisterSong Women of Color Reproductive Health Collective whose guidance and support made the publication of this paper possible.
We honor the hearts, struggles, and spirits of our sisters and allies who put themselves on the line day after day to end reproductive oppression. Reproductive health, reproductive rights and reproductive justice work is very demanding, particularly in these challenging times. We offer our respect and appreciation to those who came before, those who struggle now, and those who will carry the torch in the future.
We would like to express our deepest gratitude to all current and former ACRJ participants, members, leaders, staff and board whose work and analysis contributed invaluably to this paper. A heartfelt thank you to our readers for their generosity of time, insight and expertise: Grace Chang, Marlene Gerber Fried, Leila Hessini, Vivian Huang, Lisa Ikemoto, Manami Kano, Gwyn Kirk, Lourdes Rivera, and Loretta Ross. Warmest thanks to Robin Brandes for her endless creativity, dedication and patience in the design and layout of this project.
Funding for this paper was made possible by generous grants from:
The Ford Foundation General Service Foundation Jessie Smith Noyes Foundation Ms. Foundation for Women Unitarian Universalist Veatch Program at Shelter Rock
ACRJ Staff
Eveline Shen, MPH, Executive Director Dana Ginn Paredes, Organizing Director Diana Ming Yin, Communications Coordinator Monica Plazola, Operations Director Aparna Shah, MHS, Development Director
Board of Directors
Bouapha Toommaly, Chair Manami Kano, Secretary Chris Lymbertos Monica Plazola, Treasurer Eveline Shen, MPH, Executive Director
National Advisory Board
Kimberly Aceves, Executive Director, Youth Together Toni Bond, President, African American Women Evolving Grace Chang, PhD, Assistant Professor, UCSB Women’s Studies Sumru Erkut, PhD, Associate Director and Senior Research Scientist,
Wellesley Centers for Women Marlene Gerber Fried, PhD, Director, Hampshire College Civil Liberties and
Public Policy Program Mimi Ho, Program Director, Asian Pacific Environmental Network Edward Lee, Administrative Director, Californians for Justice Beckie Masaki, Executive Director, Asian Women's Shelter Kelvin Quan, JD MPH, Managed Health Care Executive, Attorney and
Community Advocate Tivo Rojas-Cheatham, MPH, Community Participation and Education
Section Chief, Environmental Health Investigations Branch Loretta Ross, National Coordinator, SisterSong Women of Color
Reproductive Health Collective Maria Somma, International Organizing Coordinator, United Steelworkers
Health Care Workers Council Robert Stark, Executive Director, New Mexico Community FoundationDesign: Robin Brandes Strategic Graphic Design www.robinbrandes.com
Table 1 modified from template by Laurin Mayeno
