#jennifer natalya fink

[gatheringbones]

[“By cutting me off from knowledge of my disabled cousins, I had no source of disability knowledge and history in my family. Their lives were treated as extraordinary, disposable, and traumatic—so traumatic that the very fact of them was hidden, erased from the story our family told about itself.

This is typical of how disability is narrated in the family myths passed down from one generation to another. Disability is erased, repressed, covered over. Families de-lineate—destroy the connections between generations of disabled people, their families, and their caretakers.

Our disabled kin are not merely misrepresented. They are written out of the story. By examining the ways families excise disability from their stories, I began to see how disability is fundamentally shaped by this omission. The way we assign meanings to bodies and minds, establish norms, and otherize and stigmatize according to perceptions of ability is inseparable from how we name and claim our kin.

Family is defined and produced by eradicating disability lineage, often making the inevitable appearance of disability within a given family a crisis: a trauma to be erased, effaced. Unwritten. I refer to this process as de-lineation: the separation of disabled people from their lineage. The word “delineate” literally means to mark off with lines, and thus separate. It includes the word “lineate,” derived from “lineage”—family ancestry. The de-lineation I’m examining here is sometimes literal, as with the institutionalization of my cousin XY; it is sometimes rhetorical, as with the suppression of my cousin Rhona and her disability from the family narrative. “Delineate” also means to describe or portray—a form of inclusion. So within the word itself lies the potential to re-lineate: to sew a family member back into the fold. To describe, portray, and, thus, connect.”]

jennifer natalya fink, from all our families: disability lineage and the future of kinship, 2022

[javierpenadea]

"We Should Claim Our Disabled Ancestors With Pride" by BY JENNIFER NATALYA FINK via NYT Opinion https://ift.tt/9LknXKP

[dmnsqrl]

"Weaving together stories of members of her own family with sociohistorical research, Jennifer’s latest book, All Our Families, illustrates how the eradication of disabled people from family narratives is rooted in racist, misogynistic, and antisemitic sorting systems inherited from Nazis. By examining the rhetoric of genetic testing, she shows that a fear of disability begins before a child is even born, and that a fear of disability is, fundamentally, a fear of care. Jennifer analyzes these racist and sexist care systems, exposing their inequities as a source of stigmatizing ableism.

Inspired by queer and critical race theory, Jennifer calls for a lineage of disability: a reclamation of disability as a history, a culture, and an identity. Such a lineage offers a means of seeing disability in the context of a collective sense of belonging, as cause for celebration, and as a call for a radical reimagining of carework and kinship."

[xtx87]

Press from 2000 tour of Australia for Execution, Texas: 1987 with Jennifer Natalya Fink.

[gatheringbones]

[“When my daughter received her diagnosis, my unspeakable fear was that this would just connect me to a long, depressing history of female caregivers. Self-effacing, with no identity besides caring for their child, these women were then hated by their other children—and sometimes by the cared-for child themselves.

I had struggled my entire life to redefine gender roles. To live a life free of the heteronormative and sexist expectations that define and limit women. That relegate women to supporting, care-giving roles while the men get to be independent, swashbuckling achievers. To be carefree. I chose to have only one child, late in life, in order to minimize the impact of care on my independent, feminist life. And I chose a gender-nonconforming female partner who would be an equal caregiver, ensuring that despite my being the birth mother, we would share the minimal burdens of our needs-free child. Like Washington, I naively thought that I could individually solve the systemic problems of care by having an egalitarian marriage—queer gender-nonconforming edition. All that was missing in this needs-free fantasy was the diamond poop.

I had no models, no lineages of caregiving that demonstrated the value of giving care to a disabled person in a nonsexist fashion. I had no lineages of caregiving at all.

“Behind every successful disabled kid is a bedraggled mother,” quipped one cishet “autism mom” friend. We met in the parent group I dutifully attended for the parents of kids with disabilities when my daughter was first diagnosed. “Parents,” it turned out, meant moms; my partner and I were the only couple to attend, and there was not a single dad in sight. Nor were there any single-parent families represented. Most of us were middle to upper-middle class, and three-fourths were white, with the rest being mostly Asian and South Asian, despite living in a county where 15 percent of the population are African American and 12 percent are Latinx.

We certainly were a bedraggled lot. Sacrifice seemed to be the theme. Accepting your child’s limitations. Submerging yourself to your child’s “special” needs. A kind of hyperfeminine Christian martyrdom was valorized. Oy veh! My queer, Jewish self wondered how she got here.

I wanted to escape: not from my daughter and her disability but from the system that seemed intent on denying the reality and ubiquity of ableism, instead sequestering disabled lives away in a privatized system of racist, sexist care. I found enormous value in the unique experience of caring for my daughter—and in forcing the system, from my position of extreme privilege as a white, tenured professor of English at an elite university, to adapt to my caretaking needs rather than deprofessionalize me.

My Asian American partner and I balked at entering the racist care system where BIPOC women were delegated the hardest, supposedly low-skilled, lowest-paid care work while a bevy of white female professionals handled the speech, occupational, and other high-skilled therapies. We were able instead to share the care work in an ungendered way, due to the flexibility of our white-collar jobs and our shared socialization as women. But we struggled to find a way to engage paid care-work systems that didn’t feel like a perpetuation of racism intersecting with sexism. We still struggle to find parent groups that don’t perpetuate sexism and heterosexism.

While our peers were baffled by our seeming embrace of lowly care work, and praised our DIY indie spirit and apparent adoption of maternal self-sacrifice, we didn’t recognize ourselves. Our own positionality felt unprecedented and unrecognizable. Where were we in this deeply racist, misogynist, and heterosexist story? Utterly cut off from our lineage as caregivers, which is as inherent a part of the story of disability as disabled people themselves.”]

jennifer natalya fink, from all our families: disability lineage and the future of kinship, 2022

[gatheringbones]

[“I do not mean to minimize the challenges of care work. Nor do I want to romanticize caregivers as saintly, self-sacrificing, feminized figures without needs of their own. Ugh! But my own experience suggests that doing care work can and does transform the lives of caretakers in positive ways. There is “care gain” just as there is disability gain. If care were integrated fully and equally into our lived realities of kinship, rather than outsourced or privatized in misogynistic, racist systems, its value would be visible. If disability were part of our collective kinship histories, rather than produced as an individual trauma for both the disabled person and the mother who has to figure out how to meet that person’s care needs alone, we would be in a better position to reimagine caretaking beyond its current racist and sexist configurations.

Too often, instead of challenging or transforming the problematic systemic dimensions of caregiving, we aspire to the false independence of masculine subjectivity, complete with that diamond-shitting dog. Our devaluing of care, of interdependence, of disability gain, and our lack of any sense of disability caregiving lineage lead not to freedom but rather to denial and ableism. This results in the perpetuation of unequal systems of care. If we deny the very need for care and care work as a natural and inevitable—and potentially positive—aspect of life, how can we possibly challenge the structural racism and sexism of care systems?

The fear of being burdened by the care of another, of having one’s hard-fought feminist freedom curtailed, and of ultimately being a burden to another shapes the fear and stigma underlying ableism. This enables white women like me to ignore and disidentify with the caregiver lineages from which we came. Missing from this is any specific history of caregiving. Instead, care looks like the abject plight of the great sea of (race unmarked) women. When faced with the care needs of family members, white cishet women are encouraged to “outsource” to BIPOC women rather than challenge their male partners to participate equally. Instead of challenging the public systems of school, work, and healthcare to include disabled people at the center rather than the margins of their funding and care structures, we retreat into the fantasy that we are somehow immune to disability.”]

jennifer natalya fink, from all our families: disability lineage and the future of kinship, 2022

[gatheringbones]

[“First developed in Deaf culture, disability gain points to the ways ordinary disabled people with no special abilities or talents may find benefit in their disabilities. Coined by artist Aaron Williamson in 1998, the term “deaf gain” offers a means of rethinking the whole notion of disability as deficit, beyond the specific case of hearing impairment. Instead of measuring against an impossible norm, bodyminds should be valued for their diversity—or the very differences and variety they carry. This is a biodiversity model: like biodiverse ecosystems that are valued for their diversity, social ecosystems’ health should be measured by their linguistic, cultural, intellectual, and creative diversity. As psychologists Dirksen Bauman and Joseph Murray argue, “In this light, what might normally be seen as a biological loss can actually be seen as individual and social gain in guarding against the perils of monocultural vulnerability.”

Autism advocates have adopted this model to speak of the value of cognitive and intellectual differences, offering a model of “neurodiversity” in which autism and other forms of neurological difference are valued as part of nature’s (or God’s, if you prefer) endless variations, with specific benefits not just to autistic people themselves but also to the larger society. The monofocus of autistics, for example, has led to many engineering and other scientific innovations, such as those in the field of cattle management by the well-known autistic scientist Temple Grandin. Climate activist Greta Thunberg argues that she was able to be such an international game changer about the climate crisis precisely because her autism doesn’t allow her the forms of denial and deferral that neurotypical people engage in. Her “deficits”—her inability to compartmentalize, her moral absolutism, her disregard for social norms and peer acceptance—may yet save the world.

Of course, not every disabled person can or should make such exceptional, world-transforming contributions. Few of us, disabled or not, can make such exceptional, world-transforming contributions! However, even the most ordinary disabled person gains a kind of fluency in thinking and working outside the box, in having to make work-arounds to the expectations and norms of society. Average people with disabilities and those involved in their care are often more adaptable and creative because they have to be.

This is quite a nuanced concept. “What is to be gained from disability cannot be easily delineated,” notes disability writer-activist Barker. “Disability gain . . . is what good comes of a person’s disability and impairment, that would have been unlikely or impossible otherwise. This can be as little as finding a new friend from a doctor’s appointment, or as great as finding a new community and way of life that you would not otherwise have access to.” She also notes how access accommodations such as ramps benefit all of society—a phenomenon known as the curb cut effect. A modification such as a curb cut, designed for wheelchair users, may benefit nondisabled people such as parents trying to negotiate a curb with a stroller. As a mother with a newborn in a stroller, I gained new appreciation for a very literal curb cut effect! The curb cut effect of disability lineage is that we would all be less fearful of potential differences, mutations, and “defects” when we contemplated having children if we had lived experiences of disability in our family lives and stories.”]

jennifer natalya fink, from all our families: disability lineage and the future of kinship, 2022

[gatheringbones]

[“Why even retain the term “disabled,” then, if we are all impaired, mutated, uniquely deviating from the nonexistent yet all-powerful norm?

Among disability activists and scholars, there is a lively debate about how to name and claim identity as someone minoritized by and potentially discriminated against because of impairment without perpetuating a system that disables some bodies and denies the impairment of others. Such a privileging, ranking, and sorting of bodies can only, in this view, ultimately perpetuate ableism. They argue for eliminating the whole category of disability, as its rhetoric cannot be separated from the ableism that produced it.

Rosemarie Garland-Thomson and Eli Clare present nuanced theoretical elaborations of this position, Clare arguing for a valuing of all bodyminds and Garland-Thomson deconstructing the normate-disabled binary that invented and pathologized “disabled” in the first place. Crip pride activists offer a more politicized sense of how to resignify and expand notions of disability. They instead suggest that, just as LGBTQ+ people have expanded the category of “gay” to include basically any sexual identity besides straight and have embraced the derogatory umbrella term “queer” as a rallying political cry of pride, disabled people should expand the category and reclaim “crip.”

“Crip” is a term, as activist-scholar Carrie Sandhal suggests, that “is fluid and ever-changing” and can more readily be expanded to “include not only those with physical impairments but those with sensory or mental impairments as well.” Alison Kafer argues that “crip” has a political function, pointing to the constructed and changeable ways that disability is mobilized differently at various historical and cultural moments: “Claiming crip can be a way of acknowledging that we all have bodies and minds with shifting abilities, and that such shifts have political and social meanings and histories.”So while we may all have diverse, varying abilities and bodyminds, the social and political context values and sorts them differently, in different historical moments, for different purposes.

Disability justice activists like Mia Mingus have adopted a “both and more” approach, arguing for the inclusion of all bodyminds, with all the specificity of disability and the radical deconstructive force of crip. As she eloquently suggests, this involves “moving away from an equality-based model of sameness and ‘we are just like you’ to a model of disability that embraces difference, confronts privilege and challenges what is considered ‘normal’ on every front.”It also means engaging with embodiment: the material conditions, challenges, and lived experiences of particular bodyminds.

“What do we do with bodies that have limitations, that are different (no matter how much we want to change them)?” asks Mingus pointedly in “Changing the Framework.” “How do we acknowledge that all bodies are different, while also not ignoring the very real ways that certain bodies are labeled and treated as ‘disabled?’“ This involves a radical reframing of how disability gets defined, and by whom, which honors rather than elides difference.”]

jennifer natalya fink, from all our families: disability lineage and the future of kinship, 2022

[gatheringbones]

[“Because we have such thin and phobic knowledge of the rich, complex disabled lives of our ancestors who have been excised from the story, when we encounter the disabled lives of our families, it is largely only as an absence, an erasure. No wonder we are so keen on having science literally eradicate them. Our debates about how we value life, and how we might change it, have formed around the absences, aporias, and erasures of the actual lives of disabled people from our families.

The eugenicist bias of genetics remains foundational to how we imagine our inheritances—especially those we pass along when we choose to reproduce. If we understood that our children’s genes mutate and diversify of their own accord, we would perhaps have less “genetic guilt”—fear of passing down an errant genetic trait.

If we understood that the normative bodymind is a phantasmic one, we would not let it regulate our choices. Our genetic testing, as well as our treatments, would be ruled by a different logic. Imagine a genetics aimed at diversifying the human genome!

What keeps us from developing these powerful tools in a framework that would allow for human biodiversity is the pernicious, persistent modeling of an ideal human—free of “defects”—as the goal for such research. This model, strutting down the runway of our collective imaginations, rules who can and can’t be in a family. Whether we’re hiding disabled people in sheltered workplaces, shuttling them off to segregated schools, warehousing them in institutions, or testing, CRISPR-ing, and aborting them before they’re even born in the perpetual fiction that living people with perfectly “normal” genes won’t end up disabled, the fear of disability both produces and is produced by the normate. If only ideal bodyminds are permissible in our families, our science becomes centered around eliminating all others, as if that were possible. As if that were desirable.”]

jennifer natalya fink, from all our families: disability lineage and the future of kinship, 2022

[gatheringbones]

[“In alarmingly titled studies such as Expensive Children in Poor Families: The Intersection of Childhood Disabilities and Welfare, sociologists lay out the costs of disabled children for poor women in our privatized culture of care: “Between 20 and 25 percent of the families [on welfare] had a disabled or ill mother or child, 10 to 12 percent had a disabled child, and 3 to 5 percent cared for children with severe limitations.” According to this study, work was directly affected by a child’s disability: “Families with disabled children also incurred indirect costs in the form of forgone earnings. Mothers with more than one moderately disabled child or with at least one severely disabled child were 20 to 30 percent less likely to have worked in the previous month than mothers with healthier children.” The study notes how racialized this all is: the vast majority—over 90 percent—of the study’s subjects were BIPOC. But rather than indict the system that leads to these inequities, the disabled children are blamed, accused of being expensive.

It’s also remarkable that the gendering of the caregiver as a woman—”mothers”—is assumed here. Nowhere does the study ask why mothers are expected to supply these care needs—why the state and local government do not provide this care or why fathers or other kin are not expected to be primary caretakers of their high-needs disabled children. Privatization and feminization are assumed. The mother is tasked with putting her child’s care in competition with her ability to make a living. Her experience of caregiving is figured only as a loss: of income, of work. That caregiving a loved one could be more rewarding than repetitive minimum-wage labor is not questioned. Of course the public costs of this system are the point of the study, but the gendered, private informal care system is never interrogated. Disability is the problem here!

The family—also known as the mother—is expected to provide care for disabled people at all stages of the life cycle. The blunt, gendered facts are startling: Women make up 75 percent of all family caregivers. For the working poor, this returns mothers to the public welfare systems that have been systematically defunded since the 1980s—and to low-paying care work that extracts care for others while rendering them unable to care for their own families. Grace Chang analyzes the consequences of this extractive, racist neoliberal system for the immigrant women who provide this care. “Ironically,” she notes, “these women’s labor—caring for the young, elderly, and the disabled—makes possible the maintenance and reproduction of the American labor force at virtually no cost to the U.S. government. At the same time, this labor is extracted in such a way as to make immigrant women’s sustenance of their own families nearly impossible.”It is horrifically ironic that care workers are rendered unable to care for their own families in this exploitative system.”]

jennifer natalya fink, from all our families: disability lineage and the future of kinship, 2022