All Bodyminds in Every Space: A Conversation with Jennifer Natalya Fink

May 13, 2022   •   By Eleanor J. Bader

“WITHOUT KNOWING our disability lineages, all of our children’s disabilities will seem unprecedented, uninherited, singular,” Jennifer Natalya Fink writes in All Our Families: Disability Lineage and the Future of Kinship.

This was certainly true when, in 2009, Fink was told that her daughter had autism.

Then, several years later, she learned that her ancestry included two cousins, US-born XY and Scotland-born Rhona, both with Down syndrome. Although Fink had heard cursory mentions of Baby XY, Rhona’s existence floored her. It also angered her that a relative had been completely excised from the family narrative.

If “we fail to pass down a legacy of pride in our disabled lineage, we are actively working to shame and stigmatize disability,” she writes. Furthermore, erasure frames disability as “something that happens to other people. […] [Non-disabled] children are, in this scenario, made to see disabled people as ugly others, and to fear a future in which they might themselves be disabled and thus dehumanized.” 

Erasure also denies reality, for, as Fink writes, the vast majority of disabilities are acquired with age; only about four percent are congenital.

All Our Families addresses this near-inevitability and probes the racist, misogynist, and fascist underpinnings that have long buttressed bias against the disabled. The provocative, thoughtful text also covers the limits of genetic testing, police violence against people with disabilities, and the many ways ableism is propped up by the media, the marketplace, and the medical-industrial complex. Solutions, from mutual aid to more broadscale shifts in how and by whom care is delivered, suggest a reimagined world in which “bodymind diversity” is normalized and celebrated. 

Fink spoke to LARB’s Eleanor J. Bader about writing All Our Families and the inclusive political milieu she champions.

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ELEANOR J. BADER: Why did you choose not to give cousin XY a conventional name in the text?

JENNIFER NATALYA FINK: My cousin’s identity as a Jewish male was erased and is irretrievable and I wanted to repeat the violence of that, to mark this fact. The institution he was in called him Samuel, which was his father’s name, but Jews do not name children after living relatives, so the name was inappropriate.

What was it like to learn about Rhona?

I learned of her in 2017. It was shocking and took me a while to digest. It reframed something for me about the project that became All Our Families, which is that what we think we know about our disability lineage and what is actually knowable are not the same. Many people think they have no disability lineage, but most family stories include gaps, silences, and erasures. Of course, if you assume you have no disability lineage, you can’t recoup these stories. Discovering Rhona made me think about the stories we tell about our families. What would it mean to tell family stories if they included disabled people?

Society tends to treat acquired and inborn disabilities differently. Why do you think this division exists?

The sorting system tends to reproduce the idea of the normate, the ideal bodymind and our ideas about the other. It perpetuates systems of stigma and shame. I want to emphasize the word system. Even people who consider themselves progressive humanists exist within this system, and there is a fantasy many people hold onto that they can control things, that is, if they just get the genetics right, they can end bodymind diversity. Our fears about becoming disabled, or becoming more disabled than we already are, feed a racist, sexist, antisemitic notion that people belong in categories.

Nowhere is this clearer than in the words “as long as it’s healthy” to describe the baby we hope to welcome. 

I think that it is profoundly ableist to think of good health as permanent. This allows disability to be seen as exceptional, an individual issue as opposed to something that is common. In fact, all of us, if we live long enough, will face some degree of disability. We nonetheless seem to forget that disabled people — estimated at 20 percent of the world population — make up the largest existing minority group. Part of the stigma can be blamed on religion: disability as punishment for sin. Part of it can be blamed on the racism of eugenics, the idea that humans can be perfected. But if we saw disability as an everyday part of life, it would not seem unusual, regardless of whether the disability is acquired or has existed since birth. The silence around this keeps shame and stigma going, which is why I experienced my daughter’s diagnosis as unprecedented.

I’ve learned that what is most disabling is not the impairment but what society decides about a particular bodymind. In essence, we still harbor Nazi ideas about the good body, the good mind.

Disability justice activists are trying to move society away from the myth of the perfect being, but we obviously still have a long way to go.

All Our Families addresses the racial and gendered dynamics of care work. Can you speak to this? 

Families tend to have a profound fear of the high care needs that can accompany some births. But rather than have a real conversation about the deeply patriarchal structures — the idea that care is an individual responsibility best done by the family with few supports from government or social services — we stoke the fantasy of a child with few needs. Historically, care work has been done by women, with middle- and upper-income white families hiring Black women or immigrants to do the bulk of it. We have to confront these racial and gender dynamics if we’re going to move forward. All Our Families is trying to imagine and bring into being a world in which bodymind diversity is normalized and care is both normalized and shared.

Do you object to genetic testing for birth defects? 

No. I am not against testing or other tools of science, but we might make different choices about diagnostic and research priorities if we zeroed in on the ways people are sorted. In addition, the idea of curability is deeply troubling to me and we will not be able to reimagine kinship if we do not confront this.

CRISPR — Clustered Regularly Interspaced Short Palindromic Repeats — testing that allows defective genes to be manipulated in utero, is now a done deal.

Going forward, disabled people need to be at the center of all discussions about these technologies, not excluded from these scientific developments. If disabled scientists were part of the teams inventing new technologies, I think the tools would look radically different.

What troubles you about the search for cures? 

Let me talk specifically about autism. There are a lot of therapies designed to make an autistic person behave neurotypically, such as repressing stimming and being intolerant of unusual or atypical behaviors. But these behaviors are not harmful to others. We tend to medicalize conditions instead of asking why particular behaviors — say, spinning or hand flapping — are so problematic. A big part of the way ableism works is by telling parents that it is best to mainstream their kids. If you look at an impairment as an identity, a social distinction, you won’t force a child to choose between passing or being part of a disabled community.

All parents, regardless of household composition, need community. One of the arguments I make in the book is that there should be little distinction between family of origin and chosen family. I don’t accept that the family of origin is inherently ableist, and I am excited by the work of Black, queer theorists who argue that in many Black communities, there is a complex relationship between families of origin and chosen families. They reject the binary that separates the two. Let’s recognize that family goes beyond the nuclear household and includes disabled members, past, present, and future.

Chosen family also often encompasses collective care, taking it from the private family sphere, no?

Part of the repression of disability lineage is the repression of the story of who does the caregiving. Needing and providing care is normal, and it is normal for people of all genders to do this work. What’s more, disabled people are often at the center of their own care. Since the era of mass institutionalization ended, there has been a move toward community-based, residential care, but it is typically still segregated, with people in group homes with other disabled people. Disability justice activists are now working for full integration into the community.

I want to digress here and stress that disability lineage has to include the caregiver. I was shocked to discover that the accounts given by caregivers were often very different from the narratives presented by the family. Caregivers are part of the extended kinship system. Understanding these connections is more important to me than understanding the facts of a particular disability. When we trace our lineage, it reduces stigma and shame. There are often actual records out there, but it sometimes requires going beyond mom and dad and speaking with extended family.

How can we animate the cultural shifts you advocate? 

Parents are rarely advised to find other families like theirs. They’re rarely advised to advocate for their children’s right to be who they are. Most systems focus on pathology and do not look at collective solutions. My daughter needs treatment and ways to integrate into the broader society, but she also needs a community of non-speaking people with autism. She needs it all. But medical or other agencies do not encourage community building. They instead reduce people to their disabilities as if they have no possibility of living fully human lives.

The mainstream media never depicts a family with disabled members as happy or thriving. Yes, death, illness, and pain are part of being alive, and of course we want to reduce suffering, but reducing disabled people to their disorders devalues their lives and contributions.

Has the Americans with Disabilities Act helped?

Laws are only as useful as their enforcement. The ADA does not have a built-in enforcement mechanism, so it’s on disabled people to sue violators for infractions.

What do you want readers to take away from All Our Families?

My goal is to make disability ordinary. Disabled people are often denied the right to be regular people, to be fully human. Until having disabled family members is not something noteworthy, we will continue to see disability as a family tragedy. Ironically, COVID has played a role in lessening this; society had to quickly implement accommodations like captioning and online conversations when the pandemic began. I hope this leads policymakers to consider how to better include all bodyminds in every space and at every level. Ultimately, I want us to reimagine what it would mean for every human being to have full access to what they need.

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Eleanor J. Bader is a Brooklyn, New York–based freelance journalist. Bader’s work frequently appears in Truthout.com, The Progressive Magazine, Lilith Magazine, The Indypendent, and Rain Taxi.