When I finally turned to social media, I found that the recommendations I’d been given for how to care for Edmund were incomplete and ignored the crucial perspective of disabled adults. On Twitter, I connected with disabled people for the first time. I devoured their tweetstorms, blog posts, and articles. I started to learn about the experience of disability. Stella Young’s TED Talk on disability, with all her wry humor, made me rethink how disabled people are both sentimentalized and denied basic accommodations. By reading their perspectives, I saw Edmund in a whole new light.
I heard disabled adults argue that disabled kids need to learn agency and independence rather than compliance. They want to ensure that disabled people are accommodated and receive what they need to live their lives. Many disabled people don’t want to be cured; disability is frequently essential to their identities. This is even reflected in how most disabled people define themselves: They often prefer to be called “disabled people” because their disability is vital to their sense of self, whereas parents often say “people with disabilities” because they want to stress that their child’s disability doesn’t define them.
This may seem like semantics, but it reflects the tension between these two groups. Some disabled people resent that parents, not disabled people, are often the spokespeople for disability issues, because their priorities can be so different. Upon facing a diagnosis for a child that entails disability, parents often want a cure. Failing that, they frequently want their child’s disability to at least be less apparent to the outside world. I certainly empathized with this impulse. As parents, we want the world to readily accept our kids.
But when I read an autistic person describe firsthand how painful loud noises are, I began to understand how urgent it is that I protect Edmund from similar pain. I shouldn’t try to “manage” this behavior by coaching him to tolerate the pain, as some other parents and health care professionals recommended; I should instead remove him from a place with noises that hurt him. When I read some disabled people say that they did not want to be cured, that their disability was a part of who they were, I thought that perhaps Edmund felt that way too and was unable to communicate it. Julia Bascom, executive director of the Autistic Self Advocacy Network, writes movingly of the fear and pain of being forced as a child to stop flapping her hands: “Not being able to talk is not the same as not having anything to say.”
They come into college quite damaged by school. And they perceive themselves as survivors in a battle. It’s particularly bad for writing because so much of writing is the ability to take a risk, to set a goal and risk failure.
What I’m realizing is, no matter how passionately I commit to being an ally, and no matter how unwavering my support is for NBA and WNBA players of color….. I’m still in this conversation from the privileged perspective of opting in to it. Which of course means that on the flip side, I could just as easily opt out of it. Every day, I’m given that choice — I’m granted that privilege — based on the color of my skin.
In other words, I can say every right thing in the world: I can voice my solidarity with Russ after what happened in Utah. I can evolve my position on what happened to Thabo in New York. I can be that weird dude in Get Out bragging about how he’d have voted for Obama a third term. I can condemn every racist heckler I’ve ever known.
But I can also fade into the crowd, and my face can blend in with the faces of those hecklers, any time I want.
I realize that now.
Source: Privileged | By Kyle Korver
Why don’t we know what PTSD looks like in autistic children? Why don’t we have a clear idea how many are experiencing it? I sense that this is because of the deeply problematic core belief in society that autistic distress is a ‘problem behaviour’ that is to be trained out of us. Looking at that list, anger, depression, aggression, irritability, panic, hypervigilance…. I’m mindful of how many behavioural-intervention checklists I see where those items are listed as ‘autism symptoms’ and the individual is relentlessly trained and rewarded for making their internal terror invisible to outsiders.
I am repeatedly struck with the realisation that carers are unnecessarily complicating childhood and family life – while believing they have no choice. They would probably say that it isn’t their fault, autism did it. Or that they’re just trying to help their child to succeed. Or that noone else can understand (“Walk in my shoes!”). After many years of hearing this same bullshit, I realise it simply isn’t true. Autism didn’t make your kid’s childhood disappear – them being put into hours of therapy every week did that. Autism didn’t make your child feel like someone was always watching them – the constant attempts to correct their natural ways of being did that. Autism didn’t make your child stressed – ableism did. You did.
The movement that I want to see, is one toward more simplicity for our disabled children. Autism isn’t destroying your children – you are. And you can’t stop doing it if you won’t evaluate your role in it.
Another theoretical account which might fall under the broad heading of integration and complexity is the interest-based theory, monotropism (Murray et al., 2005). This theory, developed by autistic academics, posits that the defining feature of autism is atypical allocation of attention. The difference between autistic and non-autistic people is characterised as follows: “It is the difference between having few interests highly aroused, the monotropic tendency, and having many interests less highly aroused, the polytropic tendency” (ibid., p. 140). Consequently, this model places causal primacy on the intense focus apparent in the diagnostic domain of RRBIs, with other diagnostic features following from this underlying difference. To the extent that social interaction requires diffuse and distributed attention, autistic people are not well suited to that activity. Monotropic theory, which awaits empirical testing, provides a vivid description of the autistic experience of novelty and change, giving a valuable insight into the autistic experience of a crisis, or “meltdown”:
To a person in an attention tunnel every unanticipated change is abrupt and is truly, if briefly, catastrophic: a complete disconnection from a previous safe state, a plunge into a meaningless blizzard of sensations, a frightening experience which may occur many times in a single day. (Ibid., p. 147)
Monotropic attention would lead to the development of specialised skills but also difficultly dealing with change.
The only theory I’m aware of that seems to make a decent stab at explaining the many seemingly disparate features of autistic psychology – from inertia to communication problems to hyperfocus and spiky profiles – is monotropism. However, this theory (formulated by autistics who aren’t professional psychologists) has received relatively little attention from psychologists and awaits direct empirical verification.
“Disability studies prevent disability dongles.”
“I honor the friction of my disability.”
Yes! Another great talk from Liz Jackson.
I updated “Mindfulness in Education” with selections from “ClassDojo App Takes Mindfulness To Scale in Public Education (Ben Williamson) | Larry Cuban on School Reform and Classroom Practice” and “School-Based Mindfulness Training and the Economisation of Attention: A Stieglerian View: Educational Philosophy and Theory: Vol 47, No 8”.
James Reveley has further argued that school-based mindfulness represents a ‘human enhancement strategy’ to insulate children from pathologies that stem from ‘digital capitalism.’ Mindfulness in schools, he adds, is ‘an exercise in pathology-proofing them in their capacity as the next generation of unpaid digital labourers.’ It trains young people to become responsible for augmenting their own emotional wellbeing and in doing so to secure the well-being of digital capitalism itself.
According to Davies, however, much of the stress experienced by children is actually caused more mundanely by the kinds of testing and performance measurement pressures forced on schools by current policy priorities. ‘The irony of turning schools into therapeutic institutions when they generate so much stress and anxiety seems lost on policy-makers who express concern about children’s mental health,’ he argues.
Mindfulness training, this article argues, is a biopolitical human enhancement strategy. Its goal is to insulate youth from pathologies that stem from digital capitalism’s economisation of attention. I use Bernard Stiegler’s Platonic depiction of the ambiguousness of all attention channelling mechanisms as pharmaka-containing both poison and cure-to suggest that this training is a double-edged sword. Does the inculcation of mindfulness in schoolchildren empower them; or is it merely an exercise in pathology-proofing them in their capacity as the next generation of unpaid digital labourers? The answer, I maintain, depends on whether young people can use the Internet’s political potentialities to mitigate the exploitation of their unpaid online labour time.
In many schools, leaders and teachers say ‘All Means All.’ They have it printed on school paper, posted on websites. They say ‘All Means All’ because they want all kids to feel welcome, but so many of our minoritized/marginalized populations do not. Our LGBTQ students do not feel as though they are a part of the All Means All’ equation, but they are not the only ones. As I travel internationally, I see that there are indigenous populations that do not feel included as well. LGBTQ students do not feel like they are all a part of the All Means All equation.
Source: Education Week
Those who marvel at or question the vacations teachers enjoy are unlikely to have experienced the energy drain that the profession involves. There are inevitably other professions that demand emotional commitment with life-changing implications, but the nature of teaching is such that those in the trenches tend to expend everything they have from break to break. Education as a profession, for those who care deeply, can be all-consuming.