Undercounting The Disabled
On the heels of thinking aloud about the diagnostic language gap, it probably makes a little bit of sense for me to get into the potential changes to the U.S. Census that could result in a vast undercount of disabled Americans, as described by Betsy Ladyzhets of newly-launched The Sick Times.
If the change is implemented, the census would switch from asking Americans about their disabled status with a series of yes or no questions to using scaled questions. To determine who is disabled, the agency would count only respondents who say they have significant difficulty completing basic tasks. With this shift, bureau researchers estimate that the share of Americans with a disability, based on their data, would drop from 13.9% to 8.1%.
Here more from Phie Jacobs writing for the journal Science, again hitting on the difference in approach:
Compared with the current questions, the WG-SS will “capture information in a manner that reflects advances in the measurement of disability,” an agency spokesperson said in an emailed statement. But it would also reduce the prevalence of disabled people in the U.S. to 8%, down from the ACS’s current estimate of 14%, bureau statisticians reported at the September CSAC meeting. This decrease has to do with how the WG-SS defines “disability,” as Washington group protocol states that only those who indicate “a lot of difficulty” or “cannot do at all” for one or more of the questions should be categorized as disabled.
I can’t speak to the ins and outs of how this sort of data gets used, and so superficially I can say I’m torn.
On the one hand, I understand the concerns “that many policymakers will use the 8% statistic to cut funding to programs that help disabled Americans” (Jaime Seltzer of Stanford University), because of course they will. One the other hand, more than a dichotomy means a better reflection of the “continuum” of disability (Jennifer Madans of the Washington Group on Disability Statistics). On the third hand, I also understand concerns that the new system “entrenches a hierarchical view of disability” (Bonnielin Swenor of Johns Hopkins University Disability Health Research Center).
It should come as no surprise that certainly this makes me think about the diagnostic language gap and therefore how the ways in which we discuss disability have very real-world impacts.
This also makes me think about a conversation I had in therapy at some point in the past few weeks, when I once again turned to ideas about resilience. For the third time, I think, I’m going to turn to discussions found in Deb Chachra’s How Infrastructure Works, in the form of three quotes.
One:
Resilience can take many forms, but one important element of stepping away from just-in-time optimization is building in buffers.
Two:
Resilience isn’t efficient because it typically requires an upfront or ongoing investment of resources, in the form of time, money, energy, or cupboard space, in order to head off worse outcomes.
Three:
But being resilient isn’t an intrinsic characteristic of humans. It’s an active state, and that means it has a cost in time, agency, labor, or even suffering.
If you click through the search I linked under the word “resilience” above, you’ll see me trying to work through a number of things about how you manage resources when you’re autistic, because in large part being autistic in a neurotypical world is about resource management. All of which inevitably raises the question of resilience and what that looks like in the autistic context.
Here I have to return to another bugbear of mine. Let’s talk a bit more about catastrophizing, and specifically about how it relates to what I’ve called the autistic local cache.
Autistic scripting, including catastrophizing, is a way of building resilience because it generates scenarios to place in sotrage and thereby make them available for later loading into the autistic local cache, rather than having to try to generate a new scenario wholesale and on the fly. To some extent it’s likely that these scripted scenarios, in contrast to those that form organically from lived experience might be more like templates than fully fleshed out scenarios.
These acts of scripting don’t come for free. They expend resources. The autistic calculus is that expending the resources in advance is better than having to expand the resources on the fly and in the moment. Scripting, up to and including and normatively-pathologized catastrophizing, is a way of constructing the psychological analogue to Chachra’s infrastructural buffers.
At any rate, the loose join here is that the way my life looks to the outside, as I discussed in my post about the diagnostic language gap, to a third-party would look like my bodymind is capable of bearing more weight than it’s currently carrying. That normative lens is a deception. The fact that I can more or less maintain “independent living” easily can, has, and will be used against me, in effect contributing to undercounting the disabled.
From the outside, I superficially might appear much as would a normative person, capable of navigating surprises and rolling with the punches. In reality, I mostly can only build up resilience by gaming things out, expending resources to do so, which then leaves me fewer resources for the everyday.
Here at 54, seven years after my autism diagnosis, I’m managing as best I can. I cannot do more than this. I am disabled, and I count.