Following the open letter we published last week and today’s budget announcements, we have issued the following further statement.
You can read our open letter here: https://affinot.co.uk/2025/03/21/open-letter-from-ableotuk-opposing-cuts-and-calling-for-co-production-to-tackle-the-real-barriers-faced-by-disabled-people/
Occupation, Sacrifice System: What Do I Have to Give Up to Work?
In occupational therapy, we speak often about the value of occupation – its role in providing meaning, purpose, identity, and routine. But we speak far less about what people have to sacrifice to remain engaged in occupation – particularly when that occupation is paid employment, and especially for disabled people.
There is often an invisible cost to working – one rarely acknowledged in systems such as PIP or within workplaces themselves.
What Do I Sacrifice Today to Be in Work?
For many disabled people, staying in work involves constant trade-offs. To get through the working day, I may need to:
- Let go of personal care tasks – using my energy to get dressed for work might mean I can’t wash my hair or cook dinner later.
- Choose between taking pain medication that enables me to function and managing side effects that impair my concentration.
- Avoid social contact in the evening because work has already used up all my “spoons” (Miserandino, 2003).
- Delay medical appointments because negotiating time off is difficult.
These are not trivial decisions. They reflect a daily tension between functioning at work and functioning as a person. In many ways, it’s a lived experience of occupational imbalance (Wilcock & Hocking, 2015).
What About Over the Week? The Month? The Year?
Over time, these sacrifices accumulate and may lead to:
- Burnout
- Deteriorating health
- Loss of independence in other areas of life
- A deep sense of occupational injustice
The key question becomes: Is this version of working life sustainable for disabled people? For many, the answer is no, not without support, flexibility, and systemic change.
How Is This Linked to PIP and “Being Fit for Work”?
Personal Independence Payment (PIP) is intended to help cover the additional costs of living with a disability. Yet the assessment process often fails to reflect the complex, daily decisions we make to remain in work.
For instance:
- PIP doesn’t consider context – it assesses tasks in isolation, not the trade-offs required to achieve them.
- If you’re at work, it’s assumed you’re “coping” – regardless of the personal cost.
- If you’re not in work, you’re expected to justify why – as though employment is the default goal for everyone.
The system creates a binary that doesn’t reflect reality. Many disabled people are working despite the system – not because of it.
Occupation as a Right, Not a Risk
Occupational therapy acknowledges that occupation is not inherently positive. Wilcock (1998) reminded us that occupation can promote health, but it can also be harmful.
If work leads to a decline in health, is it still a meaningful or positive occupation?
If someone gives up their energy, social connections, and basic needs to stay in work, is that truly inclusion?
This is the heart of the occupation-sacrifice system: where disabled people often have to mask their needs, overextend themselves, and be constantly “on” – and are then penalised when they seek support.
This concept of sacrificing personal needs to maintain work or function is not abstract, it’s something occupational therapists see daily. A recent OTnews feature by Abigail Howe, Faye Peary, and Lisa Johnson (March 2025) explored this tension through the development of the Occupational Therapy Capacity vs. Demand Tool®. Created for use in Long Covid services, the tool helps individuals visualise and manage their available energy across life domains.
“This visual tool helps therapists promote a deeper understanding of energy use and self-efficacy, guiding individuals to live within their baseline capacity while balancing internal and external demands.”
(Howe, Peary & Johnson, OTnews, March 2025)
The tool’s ‘Life Bubble’ concept illustrates how essential occupations, such as self-care, cooking, or hobbies shrink when someone’s energy is consumed by the demands of work. This mirrors the daily experience of many disabled people: having to make hard choices about which needs to meet and which to set aside to be “work ready.” These are not decisions that non-disabled people are routinely expected to make.
Crucially, Howe, Peary and Johnson describe how service users responded to the tool:
“It was a lightbulb moment for me, recognising what I can and can’t do has to work across my life.”
(OTnews, March 2025)
This reflection encapsulates the heart of the occupation–sacrifice system: a reality in which the capacity needed to sustain employment often comes at the cost of health, self-care, or participation in other meaningful occupations. The visual tool acts not just as a clinical guide but as a form of occupational storytelling giving voice to the invisible work of balancing energy, identity, and survival.
This work is essential. Not only because it helps individuals manage their lives more sustainably, but because it challenges dominant systems that equate employment with wellness and capability ignoring the lived costs that sit beneath the surface.
Spring Statement 2025: A Step Backwards for Disabled People
On 26th March, Chancellor Rachel Reeves delivered the Spring Statement. For many in the disabled community and allies in occupational therapy – the announcements were met with dread, frustration, and sadly, familiarity.
Changes to welfare have been justified in the name of “fiscal responsibility” and “supporting people into work”. But as we outlined in the AbleOTUK open letter, these changes fail to address the real barriers disabled people face. Instead, they shift the blame and burden onto those already living with systemic inequality.
What Was Announced?
Key changes include:
- Stricter eligibility criteria for PIP, with the clear aim of reducing the number of claimants.
- The health-related component of Universal Credit will be halved for new claimants to £50/week in 2026 and frozen until 2030.
- Overall reductions in public service spending growth, that will impact the health and social care services that many disabled people rely on.
These announcements were accompanied by rhetoric such as:
“If you can work, you should work.”
A statement that oversimplifies and dehumanises the lived experience of disabled people – especially those with fluctuating or invisible conditions, or those navigating inaccessible workplaces.
Key Impacts on Disabled People
1. Cuts to Disability-Related Benefits
- PIP reforms will disproportionately affect neurodivergent people, those with energy-limiting conditions, and people with mental health challenges.
- Universal Credit reductions will see new claimants receive £50/week instead of £100, and this will be frozen until 2030, a real-terms cut during a cost-of-living crisis.
(Big Issue, 26 March 2025)
2. Push Towards Employment Without Adequate Support
Rachel Reeves phrase “If you can work, you should work” fails to recognise:
- The barriers to employment, include a lack of reasonable adjustments.
- The pressure and sanctions are faced by those with fluctuating or invisible conditions.
- The risk of pushing people into unsuitable work that worsens their condition.
Occupational therapists know that meaningful activity – whether work, self-care, or leisure – requires physical, cognitive, and emotional energy. For many disabled people, managing this energy is a delicate balance.
A person might be able to work – but at the cost of other essential occupations like washing, dressing, cooking, or socialising. This is the essence of the Spoon Theory (Miserandino, 2003), widely used to explain life with chronic illness or disability.
The assumption that working ability equals overall functioning is fundamentally flawed. Being at work does not remove the need for support.
3. Projected Rise in Poverty
- 250,000 more people are expected to fall into poverty – including 50,000 children, many from households including disabled people.
- 3.2 million households are set to lose an average of £1,720/year.
(The Guardian, 26 March 2025)
4. Reduced Public Spending
Cuts in public service spending may result in:
- Longer waits and reduced access to adult social care, community mental health services, and occupational therapy.
- Increased strain on disabled people trying to live independently and participate in society.
(Financial Times, 26 March 2025)
What Disabled People’s Organisations Are Saying
Responses from disability rights groups describe the budget as:
- “A rollback of support” echoing austerity measures.
- “Punitive and out of touch”, particularly following a pandemic that disproportionately harmed disabled people.
(The Independent, 26 March 2025)
AbleOTUK’s Response
As occupational therapists and allies, we reaffirm that occupation – the ability to engage in daily life – is a human right.
The barriers to that right are not the impairments themselves, but the systems, environments, and attitudes that disable them.
This Spring Statement reinforces the medical model of disability – focusing on individual “deficit” and employability – rather than addressing the wider structural issues that create exclusion.
We reiterate our calls:
- For genuine co-production with disabled people in policymaking.
- For recognition that reasonable adjustments, flexible working, and access to support are necessities, not privileges.
- For an end to punitive reforms that frame disabled people as a burden.
What Can You Do?
- Share this post. Share the open letter.
- Write to your MP.
- Talk about these issues with your colleagues, friends, and family.
- Challenge the assumptions behind these policies.
The fight for equity, inclusion, and occupational justice continues.
But we are many and our voices matter.
#SpringStatement2025 #AbleOTUK #OccupationalTherapyForAll #DisabilityJustice #NothingAboutUsWithoutUs #BeAnAbleOTUKAlly
References:
Big Issue (2025) Spring Statement: Rachel Reeves’ benefits cuts explained. [Online] Available at: https://www.bigissue.com/news/politics/spring-statement-rachel-reeves-benefits-money-dwp/
Howe, A., Peary, F. & Johnson, L. (2025) Capacity versus demand. OTnews, March 2025, pp. 31–33
Financial Times (2025) Welfare cuts to push 250,000 people into poverty. [Online] Available at: https://www.ft.com/content/71d78b72-f6b8-4b01-abe9-4e2cb42871b2
The Guardian (2025) Spring Statement: live updates on Reeves’ budget and its impact. [Online] Available at: https://www.theguardian.com/uk-news/live/2025/mar/26/spring-statement-rachel-reeves-budget-labour-benefit-cuts
The Independent (2025) Spring Statement: Key takeaways on tax, benefits and housing. [Online] Available at: https://www.independent.co.uk/news/uk/politics/spring-statement-budget-summary-reeves-tax-benefits-pip-b2721884.html
Miserandino, C. (2003) The Spoon Theory. But You Don’t Look Sick. [Online] Available at: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Wilcock, A. & Hocking, C. (2015) An Occupational Perspective of Health.
Wilcock, A. (1998) Occupation for Health.
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