The Article CHALLENGING THE SOCIAL MODEL OF DISABILITY

by Amy S. F. Lutz

This morning, I discovered that I had been blocked from commenting or posting in a Facebook group for parents of children with autism because I supported a mom who observed that those with “high functioning” kids are “lucky.” Her son sounds a lot like mine—intellectually disabled, with minimal communication skills and a complete lack of safety awareness that necessitates 24-hour supervision. Yet autistic adults in the group (either parents themselves, or merely interested in advising parents) pounced on her. They suggested that her child was more capable than she described him and dismissed functioning labels as “arbitrary,” “useless,” and “harmful.” When I added that my son also suffers from epilepsy, bipolar disorder, and a history of aggressive and self-injurious rages, she and I were both blasted with a word I’ve seen increasingly weaponized to shut down discourse that doesn’t comport with the prevailing Disability Rights narrative: ableist.

I am both a parent advocate and a historian of medicine, so I’ve been very interested in how the social model of disability—which locates disability in an unaccommodating society, rather than an individual—has become entrenched in Disability Rights and academic narratives. What started out in the 1960s and 1970s as the completely common-sense observation that those with physical and sensory impairments were far less disabled in communities with curb-cuts, ramps, elevators, Braille menus, chirping traffic lights, etc. has evolved into an insistence that all disability— even the most profound intellectual and developmental—is socially constructed. Bioethicist Lisa Freitag called this “a cardinal rule that makes public optimism toward disability a requirement,” that “effectively silences parents who speak out about the hardships they encounter.”

Freitag isn’t the only academic who has challenged the hegemony of the social model. Sociologist Tom Shakespeare, women’s studies scholar Barbara Hillyer, and political scientist Stacy Clifford Sim- plican have all argued that the social model fails to consider those with significant cognitive impairments, for whom there is absolutely no societal accommodation that would allow them to live alone, hold competitive, minimum wage employment, or make meaningful decisions about their lives.

But many disability scholars refuse to engage with these critiques.

But many disability scholars refuse to engage with these critiques. In their new book on parent advocacy, for example, Allison Carey, Pamela Block, and Richard Scotch divide parents into “allies” or “obstacles,” depending on whether they align with the goals of the Disability Rights movement. (Yes, they call me out as an obstacle). Nowhere do they consider whether parents who “are more likely to pursue paternalistic approaches to care, such as guardianship, supervision, and imposed treatment” do so because that’s exactly what our kids need, not because we’re control freaks carelessly steamrolling over our children’s autonomy and capacity.

Disability Rights advocates and scholars have worked hard to articulate a broad identity that includes everyone affected by disability, and I have a great appreciation for their many accomplishments. But the key question that has remained undertheorized since Philip Ferguson pointed out in 1987 that “the exclusion of people with severe retardation from the disability rights movement is not simply an oversight…It is also a logical concomitant of the conceptual base” is how to respectfully include those with significant intellectual and developmental disabilities without eclipsing the devastating impairments that make severe autism, as I wrote in that Facebook group, “tragic.” I don’t know how best to do that, but I do know that censoring this perspective is not the answer.