The incantations that invoke Mary, call her up to stand between me and the world, are variations on a theme: I am the same. Bruce is banished. The incantations that invoke Bruce and banish Mary are variations on a different theme: I am different.
“Same as what?” you ask. “Different from what?” The reference point — the imaginary person around whom society is planned — is a pale and obscure figure, but those who have searched him out report that he is white, straight, nondisabled, educated, mature, moneyed, and male.
Those whose sameness to this reference point, this mythical man, has been stressed — whose struggle in his world has been blamed on choice, on moral lapse — may quite reasonably insist on their difference. “Disabled and Proud,” reads a tee-shirt. Those whose difference from him has been stressed — whose exclusion from his world has been considered justified — may quite reasonably assert their sameness. “I am not a puzzle. I am a person,” reads a button.
As different people experience disability in different ways, have it attributed to different sources, adopt different tactics for different situations, there are shifts between the campaigns of sameness and the campaigns of difference — and the disability community is shattered, broken into subcommunities with different traditions, different priorities, different dialects to explain different experiences.
“Nothing about us, without us,” says the South African slogan; without a sufficiently broad definition of us and a sufficiently reflective approach from those thinking and speaking “about us,” this slogan can be used to justify a change of regime, rather than a true revolution, for most disabled people.
Inclusion at the systemic level is seeing beyond categories, not just expanding the categories on which to focus. We’re not “doing neurodiversity this year” when we recruit white male coders, having focused on women or LGBTQ last year. Systemic inclusion is where we start to match ALL job competencies to people’s strengths and we reduce barriers in recruitment that don’t relate to the job. By all means, keep using computerized testing to identify competent coders, and interview people who don’t have qualifications for jobs that require people skills, but don’t expect applicants to fit neatly into diagnostic categories and come ready packaged with pre-determined skills.
I’ve come to understand that when I pass as non-disabled, when I say No, the best that I can hope to be is an inferior version of an ideal of normality that allows only for the narrowest range of body types, cognitive styles and life trajectories, that equates the worth of a person with her economic productivity, that fetishes independence and disavows our connections to each other, and that seeks to discriminate arbitrarily between those who are allowed their full humanity and those who are denied it.
So much of what gets pathologised in neurodivergent people is just the dents and scrapes and rusty bits that come from being neurodivergent in a world built for NT’s, or even just from being human in a world that is at least as rough on humans as it is on well-used wagons.
If you blame the wagon for the dents, if you have professionals giving lectures on the distressing tendency of wagons to develop dents, if you start staging interventions on every shiny Radio Flyer you can identify to stop them developing dents while you are still dropping them off the roof and running programs to get dented wagons to polish themselves up, you know what happens? You completely miss what you are seeing. (But you build a certain number of exciting careers.)
— Read on montgomerycal.wordpress.com/2019/12/29/little-red-wagons/amp/
1. Minimizing transitions or motor planning demands
This post really began when I realized all at once that most people probably don’t arrange their entire lives so as to substantially reduce motor planning demands.
I realized one day that if other people don’t have some kind of major motivation to absolutely minimize the number of motor transitions they have to make in a day, that if those extra actions didn’t cost them anything, then the fact of their being expected would make a lot more sense.
3. Mitigating inertia and smoothing transitions
When I was a kid, I would beg to be allowed to do homework in front of the TV, and try to argue that I worked better with the TV on. I knew it wasn’t really true, but I didn’t know how to explain the way I was actually trying to help myself, which was by smoothing out the anxiety and inertia triggered by starting, stopping, and changing activities.
Today, I met a new PA at uni. This is a different kind of support, to add to that which I already have in place, so I was very apprehensive. What we did during the session was to put together a list of things that it’s useful to know, in order to support me effectively. This list is not exhaustive – because of the nature of support work, you often have to work with lots of people, who only get to meet you at short notice, and it’s difficult to get information to your team in advance. So it’s important that the list is something that can be given to the worker at the start of the session, and that they can look through quickly without being “over-faced”. So the list prioritises things that someone needs to know as soon as they meet me – taking into account that at this point, I’m likely to be extremely anxious, and not as competent at verbal communication as I ordinarily am. Other things I can explain as I get to know each support worker over time.
“I want people to know that not speaking is not the same as not thinking; that poor fine motor is not the same as not thinking; that impulsive actions are different than not understanding right from wrong; that poor facial affect is not the same as not having feelings; that boring people to death is denying them life, liberty and the pursuit of happiness” Ido Kedar, [p. 34]
This quote really struck me. Autistics are often deprived of consistent forms of communication, and often treated with powerfully sedating medications because of “behaviour,” which can actually be frustration at not being able to communicate, and/or apraxic motor skills deficits. Apraxia can turn meaningful intentions into disorganised and chaotic involuntary movements. It does not reflect on the person’s capability or worth. In Ido’s essay, he clearly shows frustration at not having his innate abilities respected; it would be horrific if he were treated as if he lacked those abilities, for his entire life. Perhaps the diagnostic evaluations for communication disabilities should be redesigned?
Apraxia is something I also have. It causes me to be quite wild and crazy in my movements and actions, much like author Larry Bissonnette, who after finding a communication avenue writes, “It was Larry the artist now rather than Larry the wild and crazy autistic guy” [p. 57]. Sadly, I have been denied the help I need to integrate my sensory and motor systems. Similarly, Emma Zurcher Long describes herself as laughing out loud when someone is sad, which leads to people thinking she has no empathy. This is not the case. She feels empathy very strongly, and she emotively describes this. But we autistics may appear to have inappropriate emotions in response to emotive situations, because apraxia can cause us to not act in a way we intend to. But we relate to emotions. We feel them.
10 Considerations for the Autistic Workforce
2 Sensory Processing
5 Misunderstood and Misinterpretations
6 Knowing What to Expect and Order
8 Over Work/Under Work
9 Silence and Alone Time
10 Processing Spoken and Written Information
In no way ought autism hiring initiatives be taken lightly. And in no way should the reality of autistics’ true life challenges be underplayed, overlooked, or put off as an initiative for another day.
Imagine that every communication you receive is in a constantly changing code that you must unremittingly remember without writing it down. Imagine being expected to instantly decode every incoming transmission, while simultaneously encrypting and transmitting outgoing ones, with your supervisor standing next to you tapping their foot impatiently. If you falter, suddenly everyone in the room is looking at you, and someone says, “What?” and someone else whispers, “Wow!,” and rolls their eyes.
My subjective experience is that I’ve been defeated by the logistics, swamped by a flood of details that I can’t seem to collate. Even though I know that in many cases I can do the task and achieve the results, I will pay a price in stress and the attendant exhaustion and emotional backlash.
The not so funny thing about categories is that the law of the excluded middle makes you take sides. You start out by naming something in order to understand someone better, in a certain respect. The label then takes on its own reality and in trying to explain it, it will become necessary to subsume people under it. This is done on their behalf, because they can’t possibly want to be that way. Except that we can and will wind up wanting to do it our way. At that point we take your label and proceed to own it by challenging what you make of it. “We’re not insane,” we’ll say, “you are for calling us that.”
All that is natural and unavoidable but it is also decidedly unhelpful as two sides have so been created. Positions get fortified. War symbols are created. One side carries the flag of the poor children (and their poor parents) who can’t speak for themselves. The other side that of the adults who cannot stop speaking for themselves (and their poor sisters). And then mayhem: you’re either for or against autism. I’m not so much interested here in the merit of one side or the other (but this is a clue: I can’t stop speaking for myself ;-). What I’m interested in is how all of this literally affects autistic people, because it does. It does in a big way.
People often ask whether autism (or another neurodivergent condition) is a disability. I’d argue that it is more helpful to ask whether autistic people are disabled (to which my answer would be: in most cases, yes). It may seem a semantic distinction, but it is important: it locates the disablement not in the autistic person’s brain, but in the society they live in and the way the individual and society interact. Autism is not our disability: it may be an impairment, a difference, or some combination. Our disability is the difficulty that arises in our interaction with the specific society in which we live.
These burgeoning, fragile, necessary autistic spaces may be the foundations that can help explorations to, and with, allies, companions, partnerships. However power imbalances within and outside these spaces must be acknowledged and respected. Being able to be there was a privilege not available to all. (That shouldn’t be taken to mean that the path to being there wasn’t differently hard for so many of us). It is always better to be done “with” than “to”. Luckily autistic people (can have) strengths in clear, direct, honest communication. What could be more useful (& endangered) in a post-truth world?
That me sitting here having a conversation in a way that reads as baseline normal to you is so high-energy that I’m going to start to break down from it in about half the time as you and have to go home and collapse. That to you that’s just how humans work and to me it’s like performing an extremely high-level game of mental and physical coordination.
You don’t have to look far to find derogatory descriptions of the communication of autistic people. Terms such as ‘disorder’, ‘impairment’, ‘deficit’ and ‘dysfunction’ abound in the research literature which, when you drill down into it, offers multitudes of negative conceptualisations of the ways that autistic people do, or don’t express themselves. In simple terms, autistic people are considered impaired whether they are speaking, or not speaking, for the words they choose, or don’t choose, for talking too quickly, or too slowly, for doing so at the wrong time, in the wrong way, or in the wrong place. Indeed, as I wrote in 2018, when I explored the intersection of autistic communication with noise and silence in schools, autistic people are simply considered to be making ‘the wrong kind of noise’.