[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.

Social Model 2.0 / Claire Graf by is licensed under a