Social Media and The Disabled Child
This guest author post is by Amanda Apgar, author of The Disabled Child: Memoirs of a Normal Future , from the University of Michigan Press. This book is available in hardcover, paper, and open access.
I have a saved collection of social media posts I call “baby crip romances.” Culled primarily from Instagram and Facebook (the platforms preferred by parents of a certain age), these posts typically feature a photograph of a disabled girl and disabled boy accompanied by a caption describing the children’s romantic connection. In one post, a parent ponders if “betrothed” better describes the best friendship between two pre-pubescent children with Down syndrome. In another, a father amusingly describes his pre-teen autistic son waiting patiently and with admiration for a pre-teen girl to finish using the bathroom mirror; it’s a rite of passage, he suggests. Another parent of a terminally ill young child staged and photographed the prom that would never be, enlisting a disabled young boy as her daughter’s “date.”
Unlike me, the parents behind these social media accounts never use the word “crip” to describe their children. Like “queer” for some of the LGBT+ community, “crip” has been (re)claimed by activists and scholars of/with disability as a political position, a little bit in-your-face critique of our cultural obsession with normalcy and all its vanilla, picket-fence, 9-to-5 trappings. It wouldn’t make any sense for social media parents to use the word “crip” for the same reason I’ve never seen a parent post a little disabled girl playing “U-haul” with her disabled girl BFF. Parents want in on the project: the heterosexuality, the future, the normalcy.
I grew up in the 90s when, for a young white woman, female empowerment was not only readily available but came in styles: Riot Grrls, Spice Girls, and Buffy the Vampire Slayer were just a few of the cultural icons that shaped a generation of women like me to resist the princessization of early girlhood and offer Converse sneakers to go with Gen Z’s tutus (tutus which of course we would offer to both boys and girls). I learned that “gender was a social concept” and recoiled in horror at the persistence of pink-for-girls and blue-for-boys, and what I perceived to be an oppressive insistence on all children’s future heterosexuality. Daddy-daughter dances; a baby onesie that read, “I’m a boob guy.” What throwbacks.
When I first started reading memoirs written by parents of children with disabilities (once called “special needs memoirs”) I was surprised by the large role gender played in parents’ narratives of raising their children and navigating the exclusions of ableism. The vast majority of parent memoirs have been published since 2000, a decade or more after the passage of the ADA and IDEA, and deep into Third and Fourth-wave Feminist-style resistance to prescriptive gender norms. In one of the first memoirs I read, Keeping Katherine, Katherine’s mother writes about dressing her daughter in frilly dresses and bows intended to distract from the visible manifestations of Katherine’s disability (Rett syndrome). I was struck then (and again now!) by how normative girlhood was positioned in Katherine’s narrative as to counteract disability, as something with which Katherine’s disability was at odds. I read in An Uncomplicated Life that Paul Daugherty’s first reaction to his daughter’s Down syndrome diagnosis was to mourn the lost future of heterosexual fulfillment – a homecoming dance, a marriage to the man of her dreams. I read about boys who “overcame” their disabilities (however briefly) through the reenactment of heterosexual fantasy and gender normative masculinity: Jesse, Jeremy, Jacob, Ezra, Owen, others.
I was trained to be skeptical of cis-normative gender, and yet I also knew that as recently as the early 2000s parents of children with disabilities were pushing the boundaries by imagining their children as mini-heterosexuals. Activists and scholars alike have long argued against the de-sexualization of people with disabilities, which has variably manifest in eugenicist sterilization abuses, a flat-out refusal by non-disabled people to see people with disabilities as sexual partners, and/or a binary construction of disabled sexuality as only victimized or perverse. While crip sexuality – queer, unapologetic disabled sex – was certainly nothing new, the entitlement to banal, cisgender heterosexuality parent memoirists so frequently claimed for their children struck me as remarkable, and even more so for the way this claim was used in memoirs to mitigate the presumed negative effects of disability. Paul Daugherty’s memoir, for example, ends with his daughter becoming a sexually active heterosexual woman engaged to the “man of her dreams.” A happy ending.
I’m compelled by the tension these narratives produce between, on the one hand, a queer and feminist challenge to the limits imposed by normative cisgender heterosexual expectations, and on the other hand, the radical opportunity for totally normal gender, sex, and partnership made newly available to children with disabilities in the stories their parents tell. In my book, The Disabled Child: Memoirs of a Normal Future, I lean into this tension. I argue throughout the book that parent memoirists write against their children’s exclusion from “normal life.” But I also show that, by and large, they tend to replicate, rather than challenge or resist, existing social hierarchies of gender (and race and class). They write that their children deserve a seat at the table, the same table many of us are actively trying to destroy.
As I write in The Disabled Child, I see this as an invitation. When parents draw on familiar narratives that have, historically, excluded their children, and they write their children back in them – she had two fingers and ten toes, and she would grow up to marry a handsome prince – they remind us that narratives are just that: narratives. Cultural narratives, like those of ability and gender, shape our expectations of how to live, what is natural, what is normal. They seem utterly stable, but as memoir and Instagram children show, narratives can be rewritten. Over the course of this project, I have come to see the disabled kid romances of Instagram and parental memoirs as writing and rewriting weird narratives of radical resistance entangled with heterosexual normalcy. I find crip possibility in that instability, despite my own persisting skepticism.