Yesterday, I was blocked from commenting or posting in a Facebook group for parents of autistic children for 24 hours.
What did I say to garner such a punishment? In response to a commenter who claimed that all autistics can advocate for themselves, I wrote, “This is simply untrue. My son is 22 with a tested IQ of 40, and virtually no abstract language. At no point in his life could he articulate what he needs to thrive in an educational, vocational, or residential setting. And no one in this group could do that for him. His father and I are best positioned to advocate for him and we take that responsibility very seriously.”
The admin who removed my comment scolded, “You aren’t his voice.” In a note to the group explaining why she had deleted several comments and was now closing the subthread, she admonished, “We do not allow ableism to stand.”
After I was blocked, I re-read my comment: completely accurate, I thought – not to mention, civil. If anything, it was a drastic understatement of the cognitive impairments that will necessitate a lifetime of round-the-clock supervision and preclude Jonah from ever making an important decision for himself. How was that ableist?
In her book Ableism: The Causes and Consequences of Disability Prejudice, Professor of Psychology and Disability Studies Michelle Nario-Redmond defines ableism as “prejudice and discrimination toward individuals simply because they are classified as disabled.” This seems uncontroversial: If an employer rejects a qualified candidate just because she’s in a wheelchair, or a waiter refuses to serve a teenager with Down syndrome, that’s obviously wrong.
Yet that’s not how the term was used against me. Autistic self-advocates and disability-rights proponents more broadly have morphed this critical concept into something unrecognizable. Parents, doctors, and service providers who describe individuals who kick out car windows or bite their own arms bloody or pull out handfuls of their teachers’ hair are now attacked as “ableist,” even though they are not, as Dan Perlman defined “ableism” in his foreword to Nario-Redmond’s book, “perpetuat[ing] false perceptions of people with disabilities." In fact, they are doing the exact opposite, shining a bright light on families in crisis and insisting that the severely autistic and their uniquely challenging impairments, behaviors, and service needs not be excluded from public discourse about disability.
A common accusation that accompanies the label of “ableism” is that neurotypical parents are “talking over” self-advocates. I agree that this would also be a form of ableism if parents were “ablesplaining” to an autistic adult his or her own experience. But honestly, I’ve never seen this. No parent I know would dream of telling autistic adults what support they require to succeed in college or in the workplace – because we have no idea. What I have seen are parents correcting autistic adults who generalize from their own lives to make what are often egregiously inaccurate pronouncements about kids they have never met: that all autistics can self-advocate, as the commenter I responded to asserted; that aggressive and self-injurious behavior is just a form of communication parents need to decipher; that all autistics can read, thrive in inclusive classrooms and hold competitive, minimum-wage employment.
Ironically, by censoring parents trying to speak about the lives of their severely autistic children, self-advocates are actually the ones guilty of ableism. Nario-Redmond notes that “the term ableism clarifies the notion that anyone can be impacted by ability discrimination” – which is exactly what happens when autistic adults privilege the voices of those with the capacity to speak for themselves and reject the legitimacy of family members as representatives for their profoundly impacted children. If they succeed, only the stories of those with the cognitive ability to tell them will be counted. There is nothing more ableist than that.
Nario-Redmond, Michelle R. (2020). Ableism: The Causes and Consequences of Disability Prejudice. Hoboken, NJ: John Wiley & Sons.