Tuesday, May 28, 2013

Questions about ability and neurodiversity

Many of you responded to a BLOOM post about whether there are advantages to the way people with intellectual disability (ID) think that position ID beside autism or dyslexia as a type of neurodiversity. Here author George Estreich questions whether focusing on thinking "ability" is the way to define diversity (or human value).

Questions about ability and neurodiversity
By George Estreich

In a recent article quoted in BLOOM (Neurodiversity Rewires Conventional Thinking About Brains, Wired, 4/16/13) Steve Silberman offers a look at an idea with implications for education and a broadly inclusive society: “neurodiversity,” the idea that there are more sorts of brains than are dreamed of in our current philosophies.

Neurodiversity implies a movement away from pathology and one-size-fits-all ideas of intelligence, towards a diverse humanity and ideas of multiple intelligences. I think Silberman is right that we have narrow measures of ability, and that we tend to devalue certain kinds of brains—or, more precisely, we demand a particular combination of social and intellectual deftness, which excludes many kinds of people. In excluding them, we keep them from flourishing; the loss, Silberman implies, is not only to them, but to all of us.

Neurodiversity implies an expansion of the idea of ability. And yet, as ever, the question is the meaning of ability itself. As the parent of a daughter with a disability (Down syndrome), I see pitfalls in focusing on ability, however defined, as the core of diversity. One problem is that we can, even in attempting to be open-minded, reinforce ideas we might not agree with. For instance: in saying that "X may have social deficits, but he's great with numbers," we implicitly advocate a compensatory model, in which having a disability of one kind is "made up for" by some other ability.

Another problem is that we engage in a comparative model, where people with disabilities are judged okay because they have "other talents" (whether savant-like abilities, or the special emotional powers attributed to children with Down syndrome, or whatever.) This sort of thinking assumes that disability is bad and ability is good. While this is a convenient worldview for ranking people, it doesn’t really fit with how parents, at their best, raise their children—which, to my mind anyway, should be characterized by helping each child reach her own goals, given her abilities and interests. It also leaves the parents of children with more severe disabilities out in the cold.

I don't think these are automatically consequences of Silberman’s approach, and I wholeheartedly support the recognition of different abilities, different intelligences; but ultimately I would like to see ability itself set in the context of a more inclusive vision of humans, in which humans do not lose value simply because they can do less. Not every disabled child has a compensating ability. Another way of putting this is that if we broaden the circle, there are still people left outside the circle.

Neurodiversity is a fascinating term, because it is likely meant to imply an inclusive view of both individuals and communities. On the individual level, of course, the term suggests that brains are more diverse than we might ordinarily suppose. But as Silberman points out, the term echoes biodiversity, a way of describing community. He writes, “In forests and tide pools, the value of biological diversity is resilience: the ability to withstand shifting conditions and resist attacks from predators. In a world changing faster than ever, honoring and nurturing neurodiversity is civilization’s best chance to thrive in an uncertain future.”

In other words, people who are different are valued because they are different. This sentiment, especially appearing in the pages of a mainstream publication, is welcome. Because many of us strive to rename our children as citizens, as members of a community, as opposed to a purely medical naming, and because we resist the common charge that our children are a cost or a burden, Silberman’s words are welcome. The alternate approach is either social Darwinism or eugenics. In those views, those who are different are maladapted, and they will either wash out or should be prevented in the first place. I prefer a more inclusive view. (It should be noted that the tidepool metaphor only goes so far. Mollusks, after all, don’t have rights.)

Thinking about neurodiversity, I’m left with two questions, but no easy answers. The first: How will neurodiversity play out on the ground? If everyone uses neurodiversity as a buzzword, and the “diverse” children go to a different class, then not much has changed. We should be aware of the power of language, but we should be aware of its limits too. I prefer people to say “a child with Down syndrome” to “a Down syndrome child,” but in the end, I prefer the sentence “The Down syndrome child is in the mainstream class” to “the child with Down syndrome is in the life skills class.” What matters are funding, institutional structures, and placement. So if we pay lip service to neurodiversity, but we don’t do anything different on the ground, then the word is only a word.

The second 
question: Does neurodiversity have any limits? Are there, should there, be any? Is schizophrenia, for example, a type of neurodiversity? Which conditions, to use Andrew Solomon's terms, fall under "illness," which fall under "identity," and which inhabit the gray area inbetween. To consider the meaning of neurodiversity is to consider the meaning of health.

George Estreich is a poet, college professor and the author of The Shape of the Eye.


First of all, I'm uncomfortable with neurotypical individuals even taking up this discussion, unless they situate themselves as those who are in an undisputed position of power.

I've lived with ableism and childism rhetorics all my life, and though I sincerely appreciate parents who care for and want to protect their children, I'm fully aware that that support rarely extends beyond one's kin.

We on the neurodiversity perspective are interested in all of us, and I hope all of us are concerned with those who are not in a position to advocate for themselves.

Being an autistic individual, and an educator, I am more than capable of taking care of myself to the exclusion of others who have not had the ability to self-advocate. And I'll note that one of the reasons I feel the need to self advocate is the lack of advocacy I experienced growing up.

I can't say what the limits of neurodiversity might be, and if society will want to exclude schizophrenics, but I can say that any push towards inclusion serves us all better than the selective inclusion of who is most convenient.

From my perspective, if I was to be exclusionary, I'd knock off most of the NTs. But we have agreed to not go there.

Hi Jason -- Thanks for your message! Does neurodiversity include all people with brain differences, including people with intellectual disability?

Perhaps your view of it does. But whenever I read about neurodiversity, it's about people with autism or dyslexia or ADHD (and typical or high IQ) who have an unusual aptitude or thinking ability that is valued/marketable in conventional society.

It seems to be about finding unusual abilities in people who the outside world didn't think had value. But the focus is still on ABILITY.

It's not about questioning human value. It doesn't seem to be saying that disability is okay, or that if you have severe intellectual disability you're as valuable as someone who has the intelligence of Einstein.

So please clarify, because your version of neurodiversity doesn't seem to be the one that's generally presented.

And while I know you have welcomed people of all ability in your advocacy for autism, it often appears that people with high functioning autism or Asperger's differentiate themselves from those with intellectual disability.

I'm really glad you wrote and hope you will write more!