Structural Ableism Doesn’t Stop at the Firewall

The “formal requests” at the end about employees with disabilities and the “environmental impact of returning to onsite sic in-person work” are such transparent pandering. (I have never once heard of Apple not doing whatever it takes not only to accommodate employees with any disability, but to make them feel welcome.)

Source: Daring Fireball: Internal Letter Circulates at Apple — and Leaks to The Verge — Pushing Back Against Returning to the Office

Structural ableism doesn’t stop at any company’s firewall, including Apple’s. I agree with Gruber most of the time, but here I depart. “I have never once heard of Apple not doing whatever it takes not only to accommodate employees with any disability, but to make them feel welcome” induces heavy eye roll from my neurodivergent and disabled self.

I can’t help but think that the problem for Apple is that they’ve grown so large that they’ve wound up hiring a lot of people who aren’t a good fit for Apple, and that it was a mistake for Apple to ever hook up a company-wide Slack.

Ah, “fit”. The word used to exclude so many of us. This is an exhibit of why I prefer the rule-of-thumb: culture add > culture fit.

Company-wide Slack allows marginalized people to connect and Employee Resource Groups to form.

ERGs are a culture add. Instead of bemoaning them, we should be nurturing and learning from them. They alert us to friction and bad design. Apple should care about bad design. So should Gruber.

We are formally requesting a transparent, clear plan of action to accommodate disabilities via onsite, offsite, remote, hybrid, or otherwise location-flexible work.

Source: Apple employees push back against returning to the office in internal letter – The Verge

Cheers. Thanks for including us. We’ve been warning that the accommodations that suddenly became possible during a pandemic would go away and we’d be back to forced intimacy and the accommodations grind.

We should be foregrounding complexity as the baseline instead of effectively telling marginalized people to shut up and ERGs to go away.

”Multiplicities are an intention: We build the best collaboration, the deepest learning, when we expand the opportunities for complex vision.”

Accommodations: Individualized Responses to Structural Design Problems

Yet on a programmatic basis, disability policy and other social programs remain enmeshed, even at their best, in accommodation models, where specific proven needs or deficits generate specific individualized responses. What might it look like to shift our framing of the social safety net to a universal model?

Source: I Shouldn’t Have to Dehumanize My Son to Get Him Support | The Nation

This captures an aspect of accommodation models that really frustrate me. They encourage individualized responses to structural design problems. Instead of designing by default for “proven needs” well-known in disability and neurodiversity communities, accommodations models require individual episodes of forced intimacy, repeated over and over and over for the rest of your life. We should treat each episode of forced intimacy as a stress case that puts our designs to the test of real life.

Our industry tends to call these edge cases-things that affect an insignificant number of users. But the term itself is telling, as information designer and programmer Evan Hensleigh puts it: “Edge cases define the boundaries of who and what you care about” (http://bkaprt.com/dfrl/00-01/). They demarcate the border between the people you’re willing to help and the ones you’re comfortable marginalizing.

That’s why we’ve chosen to look at these not as edge cases, but as stress cases: the moments that put our design and content choices to the test of real life.

It’s a test we haven’t passed yet. When faced with users in distress or crisis, too many of the experiences we build fall apart in ways large and small.

Instead of treating stress situations as fringe concerns, it’s time we move them to the center of our conversations-to start with our most vulnerable, distracted, and stressed-out users, and then work our way outward. The reasoning is simple: when we make things for people at their worst, they’ll work that much better when people are at their best.

Source: Design for Real Life

School IEPs are a treasure trove of stress cases and structural problems currently treated individually. Let’s design for pluralism instead of putting us through a soul-chipping accommodations process that, at best, patches over bad design driven by “artificial economies of scarcity”.

What you can’t know unless you have #disability is how all the paperwork chips away at your soul. Every box you tick, every sentence about your “impairment” and “needs” becomes part of the narrative of your identity…

Source: Gill Loomes-Quinn on Twitter

Bascom tells me that experiences like ours happen because disability service systems are never designed to support people with disabilities but are “about managing access to scarce resources. We start with the assumption that these resources are limited, so you have to prove over and over again that you need them more than anyone else. If we as a society invested more resources in supporting people with disabilities, we could redesign our systems accordingly.”

Source: I Shouldn’t Have to Dehumanize My Son to Get Him Support | The Nation

Invest in care, and design for real life.

Previously,

Neurominorities, Spiky Profiles, and the Biopsychosocial Model at Work

I’m making my way through my second read of the very interesting ”Neurodiversity at work: a biopsychosocial model and the impact on working adults”. There is a lot to digest. It offers:

  • definitions of neurotypical and neurodivergent based on spiky versus flat profiles
  • a taxonomy and timeline of neurominorities
  • an evolutionary critique of the psychomedical model
  • a biopsychosocial model for work
  • occupational considerations of neurodiversity
  • work-related difficulties and strengths attributed to neurominorities

I recommend this to all DEI and HR workers. Selected quotes:

There is consensus regarding some neurodevelopmental conditions being classed as neurominorities, with a ‘spiky profile’ of executive functions difficulties juxtaposed against neurocognitive strengths as a defining characteristic.

An evolutionary critique of the psychomedical model

Given the extent of overlap between the conditions, the under-diagnosis of females who instead present with anxiety, depression or eating disorders, and the estimated prevalence of each condition, a reasonable estimate of all neurominorities within the population is around 15-20%, i.e. a significant minority. Research supports a genetic component to most conditions which, when considered with combined prevalence rates, suggests an evolutionary critique of the medical model: if neurodivergence is essentially disablement, why do we keep replicating the gene pool? The less extensive, yet persistent, body of work indicating specialist strengths within neurodiversity, supports the hypothesis that the evolutionary purpose of divergence is ‘specialist thinking skills’ to balance ‘generalist’ thinking skills (as per the ‘spiky profile’). The evolutionary perspective is congruent with the Neurodiversity movement and essential to understanding the occupational talent management perspective that is currently in vogue.

The psychomedical histories outlined in Table 2 speak to the evolutionary critique for two reasons. Firstly, they demonstrate the consistency of the ‘specific’ rather than ‘general’ nature of impairment (the spiky profile) across all four conditions over time, irrespective of the changing nature of causal theories. The conditions are named and identified according to their most prominent deficits, which are themselves contextualized within our normative educational social history. Dyslexia is discovered around the same time as literacy becomes mainstream through education; ADHD becomes more prevalent with the increasing sedentary lifestyles from the industrial revolution; autism increases in line with modern frequency of social communication and sensory stimulation and DCD as our day-to-day need for motor control of complex tools and machinery becomes embedded. The evolutionary critique of neurodevelopmental disorders is that their perceived pathology is related to what we consider normal in modern times, as opposed to what is normal development within the human species.3,7,53–55 Secondly of interest from the timeline in Table 2 is the final column, wherein we see that, despite consistent observation of similar neurobiological differences, we lack a single unifying theory for any condition.

Towards a biopsychosocial model

The spiky profile may well emerge as the definitive expression of neurominority, within which there are symptom clusters that we currently call autism, ADHD, dyslexia and DCD

Within the biopsychosocial model of neurodiversity, understanding work-related intervention and treatment becomes more about adjusting the fit between the person and their environment than about treating a disorder. Critical review of the extant biopsychosocial research supports the social model proposition that the individual is not disabled, but the environment is disabling.

The legal status of neurodiversity

Disability status is predicated not on diagnosis of condition, but on the assessment of functional impairment, the extent to which the individual is inhibited and excluded.

Many neurominority employees find themselves in need of disability accommodation at work. Irrespective of legal protection, social and occupational exclusion are endemic for neurominorities.

Occupational considerations of neurodiversity

A reductive, medical paradigm of research is incongruent with the legal status of neurominorities as protected conditions in most developed countries, to which organizations must adjust.

Occupational symptomatology

At the functional level, there are similarities between neurominorities in terms of presentation. As alluded to in Table 2, executive functions are a common psychological complaint, resulting in difficulties with short-term and working memory, attention regulation, planning, prioritizing, organization and time management. Self-regulation of work performance is required in many modern employment contexts and therefore these issues present as the most disabling for individuals. There is also commonality among strengths, many related to higher order cognitive functioning reliant on comprehension and creativity.Table 3, adapted again from the British Psychological Society’s 2017 report, describes reported strengths and weaknesses associated with the four main neurominorities. The comparatively fewer references regarding strengths may reflect a research bias as opposed to an accurate representation of lived experience; it certainly is incongruent with the ‘talent’ narrative that is becoming dominant in workplaces.

Accommodations

The aim of occupational accommodations for neurominorities is to access the strengths of the spiky profile and palliate the struggles.

When assessment methods are more matched to the eventual job performance (for example observation of physical examination skills using role play patients) extra time becomes less important. This principle applies across education, recruitment and employment but is poorly understood by lay people or those without an understanding of cognitive functions and the antecedent components of job performance.

Following Diagnosis

Once a condition or conditions have been identified, an individual may feel vindicated, and experience catharsis. Psychology practitioners report their clients’ mental shift following correct diagnosis at the identity level and warn that, done badly, it can lead to disempowerment.12 However, done well, understanding one’s strengths and weaknesses can lead to breaking down barriers and removing self-reproach.

Accessing adjustments

Adjustments tend to be provided as a compliance activity per individual, with few businesses looking systemically at Universal Design for neurominorities as would be recommended in the United Nations Convention on disability. Access to accommodations is thus predicated on individual disclosure, typically occurring following a conflict or episode of poor performance. Individuals are reluctant to voluntarily disclose in advance as they fear discrimination (with some justification) and therefore the aims of the disability legislation programs worldwide are not yet having the intended effect on inclusion.

Accommodations in providing medical treatment

Differences in sensory perception have been reported as a hallmark of neurominority internal experience, which may affect pain management, sleep patterns and increase routine-change difficulties during in-patient care.

Conclusions

From within an emerging paradigm, clinicians and researchers must appreciate the shift in discourse regarding neurodiversity from an active, vocal stake- holder group and embrace new avenues for study and practice that address practical concerns regarding education, training, work and inclusion. This article has provided an overview of the neurodiversity employment picture; namely high percentages of exclusion juxtaposed against a narrative of talent and hope. Understanding the importance of nomenclature, sensory sensitivity and the lasting psychological effects of intersectional social exclusion is key for physicians wanting to interact confidently and positively with neurominorities. The proposed biopsychosocial model allows us to provide therapeutic intervention (medical model) and recommend structural accommodation (legislative obligation) without pathologization (social model). In other words, we can deal pragmatically with the individuals who approach us and strive for the best outcomes, given their profile and environment.

Source: Neurodiversity at work: a biopsychosocial model and the impact on working adults | British Medical Bulletin | Oxford Academic

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