A blog-friend (i.e. someone I know only because we read each other’s blogs) posted this last night, and I had a look. It’s a post about the fact that PBS News Hour has started a six-part series called “Autism Now,” and the series was at least partly inspired by the fact that host Robert MacNeils’s grandson Nick has autism.
After watching the first part of the series, I shared this with blogger Melissa:
Okay, so here’s a quick comment based on having watched only a tiny bit of the PBS clip. It troubles me a bit how autism is framed here as (mostly? entirely?) a medical condition–worse, as a medical problem. It strikes me as troubling, like Nicholas is now defined not as a person but as a used-to-be-person-now-tragedy.
The clip starts by explaining that they’re going to explore “how Nick was transformed from that healthy boy to Nick today.” Nick’s mom, Alison MacNeil, describes seeing a very young Nick exhibiting behavior that is often affiliated with autism. “I had this sinking feeling in my stomach,” she explains, “because I knew something was wrong.” At one point MacNeil interviews his granddaughter, Nick’s ten-year-old sister, and she shares with him, “I hope that [Nick] gets healed soon.”
MacNeil notes his own painful feelings at the challenges he has in connecting with Nick. He frames his relationship with Nick as strange, so different than his relationship with his children and other grandchildren. These are valid feelings for MacNeil himself to be grappling with, but the show seems to suggest that the pain results from Nick’s “abnormality,” not from MacNeil’s need to reframe his expectations for his grandson. Further, he describes his admiration for his daughter and son-in-law’s “patience and courage,” and he seems impressed that his son-in-law comes home from work every day and spends 90 minutes riding the bus with Nick. The show, then, seems to be characterizing autism in two ways: as an illness that must be understood by medicine and healed, and as a tragedy, a tragedy that makes the parents heroic. Nick isn’t okay as he is today. He’s not normal. He needs to be fixed. Thank goodness that Alison and Dave are so patient and courageous.
As I wrote to Melissa, I find this troubling. I don’t have a child with autism, so I can’t speak to that experience on a personal level, but this show strikes me as participating in the sort of dehumanizing rhetoric I often see in public discourses around children with cognitive disabilities.
As good timing would have it, I watched the first part of the series last night, after I got home from a graduate class in which we’d been talking about autism. We were discussing public representations of autism and the cultural work various representations are doing. We had a look at Ari Ne’eman, the first openly autistic Presidential appointee ever. In an interview with Wired magazine, he advocates neurodiversity, a framing of autism and other cognitive disabilities not as deficiencies, defects, or tragedies, but as different ways of being. He explains,
There’s a strange idea out there that neurodiversity advocates think that autistic life is all flowers and rainbows, but I don’t know anyone who thinks that way. Most of us have had deeply personal experiences of social isolation, bullying and abuse, lack of support, discrimination, and plenty of other problems. But it’s much more productive for us to focus on how we can improve people’s lives than to keep presenting people as pitiable burdens.
No more pity. It doesn’t help anybody.
Ne’eman has received a surprising number of hostile responses to his appointment to the National Council on Disability, responses that seem in part to be based on his perspective on autism. As one of the people in class last night observed, “Changing our culture to accommodate people with autism is much more immediate and pragmatic than all these efforts to find a cure for autism. Maybe that’s why it’s threatening: it’s saying that the mainstream culture has to change, rather than saying that people with autism have to be different, or disappear.”
I don’t mean this post in any way as an individualized critique of the MacNeil family. The family clearly loves Nick and advocates accommodations and support for him—and for them—and this show is certainly meant to raise awareness about autism. But the show itself strikes me as an example of how easily (even unintentionally) autism and other cognitive disabilities can be framed as tragedies to be mourned, and/or conditions that are unacceptable and need to be fixed. I’d rather see more public emphasis on neurodiversity, on changing our society so that we can accommodate and support as many different types of people as possible.