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Snow in the alps

Category: (Dis)ability

How Policy Must Be Built to Work for Disabled Staff

[cross-posted from my work in WhoCares, https://whocares.ed.ac.uk/]

Work Package One, part of WhoCares, starts with the most fundamental question in disability governance:

How does policy need to be designed, structured, and embedded so that it actually works for disabled staff — not just on paper, but in everyday practice?

Universities often assume that writing a good disability or reasonable-adjustments policy is enough. WP1 shows why this isn’t true. A policy is only one component in a much larger system of recruitment, onboarding, HR procedures, line management, IT access, estates, health & safety, culture, and communication. If any part of that system fails, the policy fails with it.

What WP1 Does

WP1 maps this whole system — the “policy machine” — using approaches borrowed from systems engineering, aviation safety, and human factors. It looks at:

  • The policy itself: clarity, structure, responsibilities.

  • The policy network: how related policies reinforce or contradict it.

  • Implementation chains: who needs to know the policy and who actually does.

  • Human factors: workload, communication breakdowns, unconscious bias, norms, and the predictable ways people misinterpret, forget, or avoid policy.

  • The labour of inclusion: the hidden work disabled staff do because the system hasn’t been designed around them.

The aim is to diagnose where disability policy collapses: not at the level of legal compliance, but at the point of lived experience.

Why This Matters

Disabled staff do not experience “a disability policy.”
They experience the entire ecosystem around it.

A policy will only work if:

  • it is known,

  • it is understood,

  • it fits coherently into the wider policy environment,

  • it can be implemented by staff with the time, training, and resources to do so,

  • it accounts for human fallibility,

  • and it does not rely on disabled staff to constantly self-advocate, educate, chase, or correct the system.

Most UK universities currently fail at several of these points, creating a wide implementation gap: the difference between what the policy promises and what disabled staff actually experience. WP1 analyses why that gap exists — and how to close it.

What WP1 Contributes

1. A systems-based blueprint for policy that works.

Policies must be written and embedded like engineering systems: with defined subcomponents, interdependent parts, and checks that each part is installed and functional.

2. Human-factors insight into implementation failure.

Policy collapses not because people are malicious, but because they are overloaded, undertrained, distracted, or following local norms. WP1 uses human-factors models (including aviation’s Dirty Dozen) to analyse these predictable failure points.

3. Practical strategies to reduce the labour of inclusion.

WP1 identifies how policies must be designed to shift the workload off disabled staff — through better communication, automatic prompts, universal design, resource allocation, and built-in accountability.

In Summary

Work Package One provides the evidence base for building disability policy that actually works.
Not symbolic. Not aspirational. Operational.

It shows that effective disability policy isn’t one document — it is a functioning system, explicitly designed to overcome human factors and implementation gaps. And when that system works, disabled staff don’t just get support: they get equity, dignity, and the chance to do their work without carrying the extra labour that the system should carry for them.

Social Model 2.0

[cross posted from my work on WhoCares https://whocares.ed.ac.uk/blog]

Why We Need a Social Model 2.0

For decades, the social model of disability has been one of the most transformative frameworks in disability rights. It offered a radical, empowering shift: people are disabled not by their bodies, but by barriers created by society. Stairs disable wheelchair users, not paralysis. Small print disables visually-impaired readers, not impaired vision. The problem lies not in the person, but in the environment.

This was a necessary and powerful counter to the medical model, which treated disability as an individual defect to be cured, controlled, or pathologised. The social model exposed the injustice of designing a world around a narrow idea of the “normal” body. It said: we can build something better. And it changed law, activism, and everyday access in ways that can’t be overstated.

But that doesn’t mean the social model is complete.


Where the Social Model Hits Its Limits

The social model works brilliantly when barriers are environmental or attitudinal. But it struggles — really struggles — in scenarios where pain, fatigue, neurological overload, or deterioration are intrinsic to a person’s condition, not results of external barriers.

Someone with:

  • chronic nerve pain

  • ME/CFS

  • sickle-cell disease

  • inflammatory conditions

  • degenerative disorders

  • complex neurological conditions

  • or severe migraines

…doesn’t stop suffering just because a ramp exists, or a workplace is accessible. No manager, however inclusive, can magically remove a pain flare or a seizure cluster. And the classical social-model line of “the disability is only in the environment” can begin to feel gaslighting for people whose daily experience is hardship.

This leads to two significant limitations:

1. It assumes suffering is always externally imposed.

This erases the lived reality of people whose bodies do cause real pain, unpredictability, or limitations.

2. It overburdens disabled people with the job of “advocating for access”.

Under the classic social model, if barriers disable you, you must identify them, explain them, request adjustments, negotiate them, and sometimes fight for them.
The result: the hidden labour of navigating disability remains on the disabled person.

This hidden labour includes:

  • managing symptoms

  • managing energy

  • coordinating care

  • managing medication logistics

  • constantly self-advocating

  • endlessly explaining

  • covering for inaccessible systems

  • translating policy into reality

The social model removed some burdens, but it left too many where they were.

We need something better — something that acknowledges bodies as real, and societies as responsible.
We need Social Model 2.0.


What Social Model 2.0 Looks Like

Social Model 2.0 keeps the best of the original — the focus on removing barriers — but adds a crucial layer of collective responsibility. It recognises two truths simultaneously:

  1. Some suffering comes from disabling barriers.

  2. Some suffering comes from the condition itself — and society must still help carry that load.

In Social Model 2.0, inclusion means more than ramps, captions, and flexible work.
It means society intentionally takes on the labour that disability otherwise forces onto the individual.

Instead of saying:

“Tell us what you need, and we’ll see what we can do.”

Social Model 2.0 says:

“We assume you carry invisible labour. We proactively share that workload, because pain and symptoms aren’t a personal failing — they’re a collective responsibility.”

This model recognises that access is not just the built environment; access is the entire ecosystem of living with a condition.

What this looks like in practice:

1. Collective responsibility for accessibility basics

This part is classic social model:

  • ramps

  • clear signage

  • lighting

  • flexible deadlines

  • hybrid meetings

  • quiet rooms

  • sensory-friendly events

  • non-hostile HR processes

  • inclusive policymaking

  • accessible digital systems

But unlike the original model, Social Model 2.0 treats these not as optional extras but as organisational duties — automatically deployed, not dependent on disabled people asking for them.

2. Collective responsibility for health-related labour

This is the new layer.
It says: even when a condition’s pain or instability is intrinsic, society has a duty to help.

Examples:

  • Ensuring someone with a painful condition has secure, reliable access to medication

  • Giving extra recovery time without guilt or performance penalties

  • Creating predictable routines so symptom management becomes easier

  • Making sure someone doesn’t have to fight insurance, HR, or scheduling while in pain

  • Assigning support workers or admin assistance to reduce cognitive and logistical load

  • Designing systems where disabled people are not required to “prove” their condition repeatedly

  • Building organisational cultures where illness and pain are assumed, not doubted

  • Proactively checking that people in flare or decline have their practical needs covered

In other words:

We stop pretending that inclusion ends at “remove the barrier”

and start recognising that many barriers are internal to the body — and still not the disabled person’s burden to carry alone.


Why Social Model 2.0 Matters

Because the world has changed.
Because we understand more about chronic illness, neurodiversity, pain science, fatigue, and fluctuating conditions than we did in the 1980s.
Because “inclusion” can no longer stop at architecture and attitudes.

And because we now know that:

  • Pain is real.

  • Fatigue is real.

  • Overload is real.

  • Recovery time is real.

  • Admin is labour.

  • Self-advocacy is labour.

  • Navigating inaccessible systems is labour.

  • Managing medication is labour.

  • And all of this is work disabled people are doing every single day that nobody sees.

Social Model 2.0 says:
If society disables us, society must fix it.
If the body disables us, society must help carry that weight too.

It isn’t about pity.
It isn’t about protection.
It’s about justice, dignity, and shared responsibility.


Conclusion: A Model That Finally Fits Reality

The original social model liberated us from a worldview that blamed disabled people for existing. But like any model, it reflects the era it was born in. Today, we face different challenges: long-term conditions, fluctuating illnesses, invisible disabilities, complex pain conditions, and the enormous hidden labour that comes with them.

Social Model 2.0 is not a replacement — it’s an upgrade.
It keeps the political strength of the original while updating it for the world disabled people actually live in.

Because inclusion isn’t just removing barriers.
It’s removing burdens.

Because disability isn’t just a policy problem.
It’s a shared societal responsibility.

And because no one should have to carry their pain — or their access needs — alone.

Autistic folk vs language

“Autistic people struggle with language. They don’t understand when you say the horse has bolted.”

No. It’s a bit different from this.
(Also, at least say the horse has sailed, make it interesting)

What Autistic people and people who don’t speak your English struggle with is hidden meaning. Like in this post.

What do you mean “your English”, Claire? There is only one English.
*Linguist mode activated*
There are hundreds of thousands of Englishes.
Regional variation.
Class variation.
Education.
Neurotype.
Age.
Gender.
Health.
Oh, and that is just the native speakers.

And, did I mention everyone has more than one English?
You don’t speak to your granny like to the lads in the pub. Hopefully…

Okay, now where does your autistic colleague or student struggle?
Hidden meaning you can’t look up.
Let’s take email sign offs…

Kind regards: My default setting. Like a Roomba with manners. I did not put effort in. Not really kind.
Regards: I’m very cross with you.
Warm regards: Something is afoot. You will discover it in Act III.
Best regards: I want something. I likely don’t know you and I’m just hoping for the best.
With regards: I don’t speak English well and Google suggested this.
Best: The salted crisp of sign-offs. Acceptable. Emotionally vacant.
Thanks: I’m polite, but make no mistake — the clock is ticking.
Thanks again: Please read the subtext before things escalate. My patience is now as thin as a UK bin bag.
Thanks in advance: Emotional extortion in professional font. You are now forced to do what I asked for.
All the best: I’m about to retire or I think you are/should be.
Appreciate it: I absolutely do not. In fact, I’m annoyed you didn’t already do this.
Yours truly: Romantic. Does not belong here.

Now, “regards” does not always “I’m angry with you”, it means that depending on who said it. And if you don’t know the person you have to learn to guess correctly from their role, age, skin colour, name, and the rest of the email.
That’s a lot of work and really complicated and requires a strong theory of mind (thinking yourself into someone else’s shoes).

Now what?

So, if my student/colleague doesn’t get my hint they are autistic?
Maybe. Or not a native speaker. Or from a different English speaking part where things are phrased differently. Or not that gifted with social antennae.
But, good news! You don’t have to know. Just use these 3 tips on everyone and you’re sorted:

1. No hints!
⛔ “Maybe Bauer 2012 is worth a look…”
✅ “Read Bauer 2012 please.”

2. Clear language
⛔ “This is quite good, you might want to do a little editing…”
✅ “This has potential but it is not there, yet. You will have to make substantive edits.”

3. Assume no malice:
⛔ “Bob was rude to me, I have HR on speed dial!!!”
✅ “Okay, what Bob said sounded a bit rude to me. What is the best possible interpretation of what he just said? It’ll roll with that until proven otherwise.”

Auditory Processing and Radios

Today in understanding neurodiversity: Auditory Processing Disorders

My approach: chaotic.

APDs are all about processing not sensory input. So many of us are quite good at low processing comms like radio, calling dispatch, underground radio etc. And bad at other audio only setups.

Because I am, like many people with APD, also blessed with hypersensitive hearing, I’m actually better at radios in wind and background noise than most.

Why is that an important distinction? I’m not Deaf but I have to lipread when conditions are bad. And I can still turn around and operate the radio well. That’s not mutually exclusive.

“But why can you operate a radio then, Claire? Shouldn’t you be worse at that than most people?”

Funny you ask…
Radio is easy. Why?

It follows a very simple system.
The number of things that can be said are predictable.
People speak clearly and don’t mumble.
The turn taking is verbal and explicit (“over”).
Backchannelling is verbal and explicit (“copy”).
Asking for clarification is considered good form.
There is no social bonding aspect.
There is a very strong emphasis on maximum distinction (“niner” for 9).
It’s short.

“So you do phone calls well then?”
🤣🤣🤣 No.

Auditory Processing Issues joke

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