Self-Declaration of Disability

At 23, I read over my medical records for the first time and discovered that 8 years prior, my doctor had referred me for an autism assessment. This referral was rejected by the man in charge without even so much as taking the time to meet me. He “wasn’t convinced”. It’s difficult not to feel resentment towards this man when I consider how different the last 8 years might have been had he given me the time and consideration I deserved. I often wonder if I had been a 15-year-old boy with these difficulties instead of a 15-year-old girl, would that have inspired him to engage in more critical thought?

Finally accessing this diagnosis has been the most truly liberating experience of my life and the person I have to thank for that, is myself. I found it, I researched it and I fought hard for it to be taken seriously. If I hadn’t, I would still be flailing around in those muddy waters, lost and alone. For the first time in my life, I understand myself and I am committed to authentically honouring my needs.

That is why, I beg you to reflect, before expressing outrage over self-declaration, or forcing your employees or colleagues through a degrading process to ‘perform’ their disability for you, just so that they can access basic support.

https://www.theblether.scot/selfdeclarationofdisability

Critic of the Dawn by Cal Montgomery

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.

http://www.raggededgemagazine.com/0501/0501cov.htm

How To Recruit Disabled Talent: Making It Safe To Disclose

When trying to decide if your business is a good fit, ableist microaggressions can be a red flag to a disabled candidate. Comments like “you don’t look Autistic” or “I can’t believe you are dyslexic your application was so good” may be well intentioned but the subtle implications of such statements suggest that you think of these conditions negatively. 

https://www.forbes.com/sites/drnancydoyle/2021/02/19/how-to-recruit-disabled-talent-making-it-safe-to-disclose/?sh=ef31bed21c8b

Book review: Diagnostic Cultures.

first chapter, entitled ‘the spread of diagnostic culture’, starts with the provocative statement that each year in Western countries, around a quarter of the population will suffer with a mental disorder. Should we interpret this as evidence for the progress of psychiatry in identifying and treating mental illnesses that have always existed? Alternatively, might it be the case that modern life somehow creates new conditions, or social pathologies? Brinkmann argues that a third, more fundamental explanation is needed: the development over recent years of what he calls ‘diagnostic cultures’. Increasingly, psychiatric diagnoses have become the lens through which people in Western societies understand ourselves and our suffering. They have substantially displaced religious and moral conceptions, and have also come to play an important role in our bureaucracies and our broader social arrangements. Partly, Brinkmann argues, this has been driven from above by those with a vested interest in these explanations, for example psychiatrists and drug companies. However, he also contends that citizens themselves are increasingly pushing for ‘pathologisation from below’, seeking diagnostic explanations for the various problems that we encounter in our lives.

https://repository.canterbury.ac.uk/download/7ef8049b387808cafb9c22d09046ab1ae92ddd9a72ddbb0be580d80b6dc46afe/515157/Diagnostic%20Cultures%20Anne%20Cooke%20Prepublication%20Accepted%20Version.pdf

Is Hiring Autistic Male Coders Neurodiversity Inclusion Or Exploitation?

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.

https://www.forbes.com/sites/drnancydoyle/2020/03/06/is-recruiting-autistic-male-coders–neurodiversity-inclusion-or-exploitation/amp/

Misc ADHD resources

(Under construction)

=====

– Inattention: For many girls with ADHD, maintaining concentration is a constant struggle. They may have trouble focusing long enough to complete tasks both at home and at school. Don’t be thrown off by hyperfocus. Some people with ADHD are capable of focusing endlessly on things that interest them but can’t sustain attention on less interesting but more important tasks: A girl might read a novel cover to cover but find herself unable to finish the one-page book report.

– Distractability: Girls with ADHD may also be easily distracted by outside stimuli, and prone to what Dr. Quinn calls “internal distractability.” Unconsciously swept away by their own thoughts, they end up completely missing things going on right in front of them.

– Hyperactivity: Some girls show more “classic” signs of hyperactivity: being excessively active, struggling to stay still. Most, however, display the urge to be in motion more quietly, doodling, fidgeting, or constantly wiggling in their chairs.

– Impulsivity: This, too, looks somewhat different in girls than boys. Girls may be overemotional, unable to slow themselves down to process their feelings. “Girls are more likely to be chatty and verbally impulsive,” says Kathleen Nadeau, director of the Chesapeake Center for ADHD. “They interrupt and talk out of turn.” Impulsive girls may struggle to interpret what is and isn’t socially appropriate and have trouble making and keeping friends.

– Executive Malfunctions: Many of the issues associated with ADHD stem from poor executive functioning skills. Girls with ADHD can display poor time management and struggle with multi-step directions and task completion. Important items often go missing, sometimes remerging in surprising places: My phone was in the fridge? I have vivid memories of rushed, stupid mistakes that cost me dearly on tests, key buttons (ahem) left undone, vital papers lost only to be found, far past due and squashed beyond recognition, at the bottom of my backpack.

How to Tell if Your Daughter Has ADHD

=====

  • The main symptoms of HKD are impaired attention and overactivity. Both are necessary for diagnosis.
    • Impaired attention – manifested by a lack of persistent task involvement and a tendency to move from one activity to another without completion.
    • Overactivity – characterised by restlessness, talkativeness, noisiness and fidgeting, particularly in situations requiring calm.
  • Early onset – behavioural symptoms present prior to 6 years of age, and of long duration.
  • Impairment must be present in two or more settings (e.g. home, classroom, clinic).
  • Diagnosis of anxiety disorders, mood affective disorders, pervasive developmental disorders and schizophrenia must be excluded.
Overview of the ICD-10 medical classification system for ADHD

=====

Current ADHD Diagnostic Criteria – DSM 5

Below is the shortened version of the criteria used for diagnosing ADHD.

Current ADHD Diagnostic Criteria – DSM 5

=====

Am I disabled?

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.
https://aeon.co/essays/what-does-it-mean-to-consider-yourself-a-disabled-person

Bipolar Disorder – Embracing Neurodivergence And Affirming Disability

Part of me would be more comfortable with the term ‘condition’ than ‘disorder’ because of the judgement implicit in the latter. But ‘disorder’ to me is an important acknowledgement of the havoc frequently, but not always, created by extreme manic, depressive or psychotic episodes. These states result more easily in some than in others. When and how this happens is a result of myriad dynamic, interconnected factors, some personal and biological, many of them circumstantial and social. However, my lived experience leaves me with the firm conclusion that there is an intrinsic, physiological way in which at least some people who experience mania and certain forms of depression are different from most people. That difference is not, in itself, a disorder. It’s just a difference. But it is a difference that makes those experiences more likely to happen to me than to others.

Insisting that disorders are not real (and/or that there is no congenital physiology involved) erases this difference and elides the complexity of my identity and my experience. Akiko Hart has written eloquently and comprehensively about this. It is much more useful to criticize the construct of psychiatric disorders in terms of the normative and invalidating power being deployed depending on when, how and why the term ‘disorder’ is used. Broad acceptance of a purely biomedical understanding of psychiatric disorders can condemn people to an existence defined by pathology. The construct of “personality disorder” is particularly abusive in this regard. At the same time, it is critical to recognize that some people find the term ‘disorder’ helpful and representative of aspects of our experience or even of our selves.

Bipolar disorder – embracing neurodivergence and affirming disability

Little Red Wagons – Cal’s Blog

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/

When Adaptation Looks Like Laziness

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.

http://www.thinkingautismguide.com/2020/07/when-adaptation-looks-like-laziness.html

Laziness does not exist

Let’s look at a sign of academic “laziness” that I believe is anything but: procrastination.
People love to blame procrastinators for their behavior. Putting off work sure looks lazy, to an untrained eye. Even the people who are actively doing the procrastinating can mistake their behavior for laziness. You’re supposed to be doing something, and you’re not doing it — that’s a moral failure right? That means you’re weak-willed, unmotivated, and lazy, doesn’t it?
For decades, psychological research has been able to explain procrastination as a functioning problem, not a consequence of laziness. When a person fails to begin a project that they care about, it’s typically due to either a) anxiety about their attempts not being “good enough” or b) confusion about what the first steps of the task are. Not laziness. In fact, procrastination is more likely when the task is meaningful and the individual cares about doing it well.
When you’re paralyzed with fear of failure, or you don’t even know how to begin a massive, complicated undertaking, it’s damn hard to get shit done. It has nothing to do with desire, motivation, or moral upstandingness. Procastinators can will themselves to work for hours; they can sit in front of a blank word document, doing nothing else, and torture themselves; they can pile on the guilt again and again — none of it makes initiating the task any easier. In fact, their desire to get the damn thing done may worsen their stress and make starting the task harder.
https://humanparts.medium.com/laziness-does-not-exist-3af27e312d01

Acedia: the lost name for the emotion we’re all feeling right now

John Cassian, a monk and theologian wrote in the early 5th century about an ancient Greek emotion called acedia. A mind “seized” by this emotion is “horrified at where he is, disgusted with his room … It does not allow him to stay still in his cell or to devote any effort to reading”. He feels:

such bodily listlessness and yawning hunger as though he were worn by a long journey or a prolonged fast … Next he glances about and sighs that no one is coming to see him. Constantly in and out of his cell, he looks at the sun as if it were too slow in setting.

https://theconversation.com/acedia-the-lost-name-for-the-emotion-were-all-feeling-right-now-144058

“What unsettles us is not only fear of change. It’s that, if we can no longer trust in the future, many things become irrelevant, retrospectively pointless. And by that we mean from the perspective of a future whose basic shape we can no longer take for granted. This fundamentally disrupts how we weigh the value of what we are doing right now. It becomes especially hard under these conditions to hold on to the value in activities that, by their very nature, are future-directed, such as education or institution-building.That’s what many of us are feeling. That’s today’s acedia.” From: https://www.cnn.com/2020/09/22/opinions/unrelenting-horizonlessness-of-covid-world-couldry-schneier/index.html

Hunting the Nearly-Invisible Personal Website

The personal website is a somewhat mysterious animal that lives mostly unobserved in the jungle of the Internet. A few inexperienced Internet users who live completely within the golden-walled gardens of Facebook and Google may not even be aware of the species’ existence. Other inexperienced users may consider the personal website to be either extinct, like brontosaurus, or a myth, like Bigfoot or the Abominable Snowman. The truth is that many specimens exist in the wild, but in order to successfully hunt the personal website, a hunter must know the habits of this species well.

Hunting the Nearly-Invisible Personal Website via BoingBoing

How to run a small social network site for your friends

Since August 2018 I have run a social network site called Friend Camp for about 50 of my friends. I think Friend Camp is a really nice place, and my friends seem to agree that it has enriched our lives. I’d like to see more places like Friend Camp on the internet, and this document is my attempt to provide some practical guidance as to how you might run a social network site like this.

How to run a small social network site for your friends

The Broader Autism Phenotype and Its Implications on the Etiology and Treatment of Autism Spectrum Disorders

The range of potential symptom profiles that can emerge from the varied deficits in social communication and behavior in ASD results in a complex behavioral presentation. The use of general, overarching diagnostic categories in complex psychiatric disorders such as ASD has often muddied genetic studies with these groups. Therefore, defining quantifiable components of the phenotype that are theoretically more closely tied to genetic vulnerability than a qualitative diagnosis helps to isolate traits for genetic and neurobiological analysis [133–135]. Investigations of component traits in biological relatives can also broaden our understanding of the complex systems that underlie social communicative behavior and offer insight into how these systems go awry in ASD. An interactive model of genetic, neurobiological, environmental, and protective factors may explain why significant deficits are present in affected children while only mild challenges are measurable in relatives. In depth examinations of the familiality of component traits provide a more complete picture of ASD’s etiology.

The Broader Autism Phenotype and Its Implications on the Etiology and Treatment of Autism Spectrum Disorders