"the dominant view of disability as traumatic and rare, rather than a normal part of human existence that adds to the diverse fabric of our communities."
"Disability is what we define our families against." (4) "'Disability' is never really defined in these conversations. It's a placeholder for our fears. Our limits. Our denial. Because disabled people are excluded from our notion of family, when we start imagining ourselves as parents, we literally cannot conceive (all puns intended) of our own future child as disabled. In fact, as disability activists have noted, not only are disabled people the largest minority group in the world, but anyone who lives long enough will also be disabled at some point in their life. Nonetheless, the family continues to define itself against disability, otherizing its disabled members and experiencing them as a trauma to the very fabric of family." (4)
"reintegrating what we already know about our disabled family members can powerfully combat ableism and create a living disability lineage, even in the face of institutionalization, abandonment, and repression." (30)
"As long as it's healthy,' I said over and over again when I was pregnant. As a pregnant person with 'advanced maternal age'--when you're pregnant, being over thirty-five makes you basically diseased--I knew the risks of birth defects and disabiltiy were high. I yearned for a girl, but was afraid to say so. I also wondered at all these earnest recitations of a disinvestment in gender, its defining power, by cishet women in the pregnancy support groups and casual acquaintanceships I encountered, whose lives seemed to me to be so entirely governed and constrained by gender nroms. As a feminist queer theorist who's spent her life marking and challenging the power of gender to define humans, it seemed odd for me to buy into this illogic, claiming no investment in 'its' gender identity, chromosomal sex, or genital configuration. But I stayed silent and went along with the chant. Instead, I bargained with the (vague, nondemoninational) gods for a nondisabled child of any genital configuration. 'As long as it's healthy,' I repeated nervously. I had the idea that the Universe understood i wasn't a particularly great person, so despite my advanced maternal age, I'd have a child free of disability, since i felt ill prepared to handle any sort of illness of difficulty. If I agreed to have a boy, then I would get a 'healthy' one. This disturbing cluster of ableist and gendered thoughts weere masked under the routine performance of 'As long as it's healthy.'
Healthy. A vauge and innocuous-seeming term. But what do we mean, exaclty, in this invocation? 'Health' is often a surrogate for more specific, charged words: is disabled, has Down syndrome, looks visibly disabled, uses a wheelchair, is autistic.. 'Health' allows us to not work through what we really mean. Would we accept a child with a mild learning disability? One who is slow at math? How about one with the genetic markers for addiction? The BRCA dgneetic mutation that causes breast cancer? Where do we draw the line, exactly? And if it's not healthy, what are our plans--infanticide? Institutionalization? As biologist Ruth Hubbard notes, 'Health and physical prowess are poor critieria of human worth.' 'Healthy' is intentionally vague. 'Healthy' sounds nice. But 'healthy' obscrues the eugenicist thinking undergirding this matrix of ableism." (102-03)
"This popular incantation, which would seem so progressive on first glance in its refutation of sex bias, naturalizes and perpetuates ableism. As Shagian notes, 'Symbolically, it [as long as it's healthy] enforces ableism by suggesting a good parent shouldn't care about htings like sex. . . .but it's only natural to want an able-bodied baby with a good immune system and a naturally sunny disposition." (104)
"The wish for an impossible, perpetually healthy child is linked to rhetoric about sex preference because fear of disability is, fundamentally, a fear of care. And care work si organized around gender and race in profound, troubling ways. By denying the possibility (or inevitability) of a baby's care needs, an perpetuating fear and stigma of the 'unwellness' that will necessarily be a part of every life, we defer an honest convversation about the racist and misgynistic organization of care in our society. By pretending eternal health and independence are possible for our children, we don't have to face the gendered and raced nature of how their care will be organized--and our own role within this system." (104)
"This is the dirty secret of white two-career couples. They buy the inevitable care work of parenting at obscenely low rates from BIPOC workers that used to be done by extended kinship systems. The disabled child is the scapegoat of this system: if the child proves to have high care needs, th system will be exposed, the hidden dependence of the nuclear family on BIPOC care workers rendered visible.
'As long as they're healthy.' Even before a person is born, their care needs are wished away, represssed, feared. Forget eugenics, genetic testing, CRISPR, and the rest: the technology of parental desire is far more damaging than all that. Rather than challenging the ableist nuclear family system, parents invoke this incantation to ward away disability and the care needs tha come with it. The care needs that come with being human.
The normative care narrative makes thend lives of disabled people unthinkable and unlivable. Unimaginable in the developmental narrrative, sustainable only through care rendered by BIPOC women, in the case of elites. Underneath the fear of disability is the fear that women--even white-collar women--will have to sacrifice all their own career ambitions and subjectivity to provide care. In a broken system where care is delivered primarily by women both informally in their nuclear families and as underpaid workers, it is no wonder that ableism has wended its way into parenting culture. The real fear underlying the proclamation 'as long as it's healthy' is that otherwise we, the mothers, will be consuemed and subsumed by care needs." (106)
