I Don't Think That Word Means What You Think It Means

Straight talk about disability is critical, not "dehumanizing."

Posted Jul 29, 2016

Paul Solotaroff’s essay about his autistic son Luke and the desperate lack of services for adults with intellectual and developmental disabilities had been live on the Rolling Stone website less than 24 hours before Neurodiversity advocates Emily Willingham and Shannon Rosa posted blistering critiques, both specifically accusing Solotaroff of “dehumanizing” the disabled. What, exactly, did Solotaroff do that was so dehumanizing? According to Rosa, he “expos[ed] Luke’s most vulnerable moments,” a sentiment echoed almost verbatim by Willingham.

Yes, he did.

Solotaroff described the Clifford books his son still favors at the age of 17; his need for help bathing and using the toilet; his minimal language; the complete lack of safety awareness that makes him a constant threat to dash into traffic. Solotaroff paints a very clear picture of a teenager whose severe deficits make him function more like “an ebullient toddler.”

But these details are only “dehumanizing” if such impairments are not part of the human experience (as, say, breathing underwater or laying eggs are not) – which they most certainly are. As Willingham points out, up to 25% of us will eventually become disabled. Many may end up with support needs similar to Luke’s – from traumatic brain injury, disease or dementia – and we as a society must be able to speak openly and honestly about how best to care for our most vulnerable citizens. What is actually dehumanizing is implying that Luke's dependencies and challenging behaviors somehow exclude him from the human community. Solotaroff isn’t dehumanizing his son by writing about his profound impairments; Rosa and Willingham are, by suggesting those impairments are too shameful or disturbing to be publicly shared.

A completely separate question is whether Solotaroff violated Luke’s privacy by writing about him. I have addressed this issue before, so I will just say that privacy is one of many competing values in the large and complex debates that affect the autism community, and it is often one parents of severely autistic and intellectually disabled kids simply can’t prioritize. Extensive deficits like Luke’s – and like my son Jonah’s – don’t exclude them from the human community, but they sadly do exclude them from the political process.  They can’t articulate their future needs to the IACC or to their state disability offices – they often can’t articulate their future needs, period, because of profound limitations in abstract language and reasoning. It falls on the families of these individuals to make sure their substantial and diverse needs are taken into account. Because if we don’t, who will? It’s clear from the fanciful fictions currently being spun to policy makers – including my personal favorite, that all sheltered workshops and day programs should be closed because every disabled person can get a competitive, minimum-wage job – that self-advocates either have no idea about the very different and devastating impairments kids like Luke and Jonah suffer from, or they just don’t care.

Elopement, property destruction, and sleeplessness are common among kids on the severe end of the spectrum. So are aggression, self-injury, pica and fecal smearing. Describing these behaviors as a predicate to compassionate action is not “dehumanizing,” it is exactly the opposite: fearlessly confronting the breadth of human experience and refusing to look away. We as a society have been isolating and ignoring the profoundly intellectually and developmentally disabled and their families long enough.