Why We Need a Social Model 2.0

by Claire Graf

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.

Ana Maritza Garrido

Programme Support Administrator at DigitalHealth.London ┃ MSc Gender, Media and Culture at LS

May 4, 2026

Reflections on Dr. Claire Graf's blog post 'Social Model 2.0' as part of the 'Who Cares?' project (University of Edinburgh, 5 February 2026)
Ana Maritza Garrido | 4 May 2026

Living with a chronic illness and a fervent passion for sociological research, I often find myself musing on the social aspects of my condition and thought I had all but exhausted the questions there were to ask myself on this. However, I recently read a 
blog post that led to an entirely new pondering: why, despite improved accessibility policies, extremely understanding managers and countless conversations with Occupational Health departments, do no accessibility measures seem to help?
Having learnt about critical disability studies in my Sociology and Gender Studies degrees, I am well acquainted with the social model of disability. This theory places the responsibility of disabling an individual on environmental factors (e.g.: lack of 
ramps for wheelchair users, lack of adjustments at events for those with hearing or visual impairments, etc.), rather than on the disability itself. This had always seemed like common sense - of course individuals shouldn’t be blamed for their disabilities, especially when they can be solved by environmental alterations. It is clear now that my thinking, as somebody who had not yet developed a debilitating long-term health condition, was shortsighted and did not account for the vast diversity of disabilities and chronic illnesses. To assume that all disabilities can be solved by changes to infrastructure negates the reality that some bodies inherently cause pain.

My interest in this issue was recently reignited by the blog post ‘Social Model 2.0’, published by Dr. Claire Graf (Research Fellow at the University of Edinburgh), as part of the ongoing research project ‘Who Cares? Reimagining Research Cultures 
through Research with and by disabled and chronically ill researchers’. In this piece, Dr. Graf recognises the improvements in accessibility that the social model has helped achieve, whilst identifying how reductive this model can be for 
conditions whose symptoms cannot be resolved by removing environmental barriers. 

Although steps can be taken to avoid overexertion, there is no adjustment that can address symptoms such as my own: chronic pain, gastrointestinal discomfort and fatigue, among others. The same can be said of countless other conditions, such as 
those involving neurological symptoms and sensory overload, as Dr. Graf highlights.

In my discussion of chronic illness with friends and family, I continuously reference the seemingly never-ending ‘life admin’ that this entails: the incessant to-do list of specialists to call, medical gatekeepers to justify my symptoms to, departments to over-explain to… Living with a chronic condition carries not only the weight of feigning normalcy during a flare-up and having to explain, time and time again, that just because I have experienced an improvement today, I could take ten steps back (or forward) tomorrow, without an obvious trigger. It is not only the fact that most people, even though they do not mean to, tire of you being ill, constantly acquiring new symptoms, not getting ‘better’ through their optimistic but unhelpful misunderstanding of the adjective ‘chronic’. It is not even just having to endure the endless thread of wellmeaning but frankly paternalistic advice provided by everybody who is not a medical specialist nor a sufferer of a similar condition, but the administrative load that one must bear to continue living a semi-functional life whilst fitting in the need for breaks, adjustments and follow-up care, without mentioning the immense load borne by those who have not yet received a formal diagnosis. However, this additional labour seems to be almost entirely absent from conversations on disability and illness in workplaces, academic settings and colloquial conversations.

Therefore, it is no surprise that I was shocked to see this notion so eloquently discussed in Dr. Graf’s article. Never before have I felt so validated by a stranger than when reading their acknowledgement of the daily labour and restless selfadvocacy that is embedded into daily life with a chronic condition or disability. Dr. Graf’s updated version of the social model, Social Model 2.0, integrates a focus on collective responsibility, stipulating that although environmental barriers are disabling in some instances, in others, the condition itself directly causes suffering. In keeping with this, they stipulate the following as tenets of the Social Model 2.0:

1. Collective responsibility for accessibility basics
2. Collective responsibility for health-related labour

In this way, the benefits of the original social model with its improvements to infrastructural accessibility can be honoured, whilst understanding that some hurdles experienced by disabled people are inherent to their bodies. In recognising this, there is a move away from an individual responsibility to identify and suggest reasonable adjustments, and towards a collective societal responsibility to acknowledge the reality of chronic illness and help support disabled people to carry this burden. Reflecting on personal experiences, I recall numerous conversations with managers and Occupational Health clinicians attempting to support me by providing workplace adjustments, however, these conversations rarely produced any productive outcomes. 
 

Instead, I was often left asking myself, what else can the workplace realistically do to support me? Why can’t I think of anything? Is it through my own fault or lack of innovative thought? I don’t require mobility assistance nor alterations to digital 
platforms, but I constantly felt overwhelmed and burnt out, despite having access to remote working and sick leave. In spite of the fact that I did use and benefit from the latter whilst working, it always felt like surrendering to my chronic illness; there must be a middle ground in which I do not have to completely miss out on in-person events or entire days of work. Although sick days tend to be inevitable during a flare-up and the subsequent recovery period, I believe that a shift in thinking towards collective responsibility could help alleviate the mental and administrative load of illness and recuperation, especially for those of us who experience it as a never-ending cycle. So, how does this look in practice? How can I articulate in my next job, without ambiguity, that it is not environmental change but another type of assistance, that would be most helpful? Dr. Graf helps clarify this, suggesting a number of adjustments, of which the following have captured my attention the most:

• Creating predictable routines so symptom management becomes easier
• 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

Although certain sectors may not be able to provide entirely predictable routines due to the ever-changing nature of projects and client-based work, this is an excellent starting point. The notion of a system that assumes continuous pain and a diverse 
symptomatology from workers with long-term conditions and in doing so, doesn’t require constant proof of illness, appears to be straightforward but could be revolutionary. As Dr. Graf stresses throughout the blog post, “access is not just the 
built environment; access is the entire ecosystem of living with a condition”. Therefore, there is a dire need to reimagine the way we, as a society, address disability and illness in the workplace, for the added labour that this produces to be regarded as a shared responsibility, rather than an individual load to carry and explain to others. I highly encourage all people with disabilities and long-term illnesses, those who love people living with chronic conditions, and people who are simply looking to expand their understanding and empathy to read Dr. Graf’s blog post. I also welcome others with similar experiences or opinions on the article or my reflections to share their thoughts as this topic is of particular personal and academic interest to me.