How can I make people care?

Disability benefits are not prizes to be won nor luxuries we can afford to live without.

content warning - benefits and benefits cuts - deaths by welfare

Last week I spoke at a festival celebrating disability and disabled creatives. I was presenting work I’d made last year as part of a project led by and for disabled people. It was a window into another world – what could be, if everyone had that shared understanding, shared knowledge and implicit acceptance for each other, it was beyond joyous. It made me wonder what could be possible, if everyday was like that – a world of being valued and accepted, your disability seen as an integral part of your knowledge and crucial experience that you bring to your life (and work).

1) On seeing the news and feeling like a burden (again)

This week, the week that marks the fifth anniversary of the first Covid-19 lockdown, scientists are declaring what we, as disabled people, already know. Any lessons that might have been learned have already been forgotten^[1]. I am circling feelings of denial myself. It is so much easier, so much more comfortable to ignore what is going on in the news, outside my door. Lots of other people seem to feel the same way – choosing to deny, to ignore. Alas, as a disabled person I do not have that luxury, I cannot tune out for long.

At the time of the first lockdown, the NHS and social care had already been running at their limits for decades. At the time of the first lockdown I had already been sick with debilitating post-viral illness for nearly ten years. I had to leave my career as a psychologist in the NHS. I and many others in my situation knew what was to come with a new virus on its way. Since then, we’ve had five years of Covid-19. During this time I have continued to write about my own experience in the hope it might help others. I have written for professional practitioner and patient forums, I have been involved in working with the DHSC (Department of Health and Social Care) and professional organisations supporting psychologists working with people with ME/CFS (a condition often triggered by a viral infection and a diagnosis many with Long Covid are now receiving). I am currently updating a book chapter on denial and benefits, another on denial and illness. But there have been five years of repeated infections and loss of life, five years of people being disabled by the consequences of viral infection and post-viral illness, five years of trying (and failing) to understand and support people developing Long Covid. Millions have died and millions more have been disabled. It’s beyond distressing watching yet another generation, and another, be impacted by something that could have been prevented. It is such a careless disregard for life. And yet, rather than continue to try to understand, to persevere in finding treatment for and services to support, or even to look at preventing further infection and disability through public health measures, like mask wearing and HEPA filters – a time when I thought perhaps this will be the trigger to creating change for us all – the government has decided to shrug its shoulders and give up. Worse than that, they have declared that it is the sick people who are to blame and must be punished. Neatly reinforcing every false belief ever declared by patient-blaming stigma.

We knew this was to come, disabled people knew, those of us who live with the long-term effects of post-viral illness knew – around 10% of viral infections lead to post-viral illness, they always have done. Covid-19 has simply been experienced by vast numbers of people all at the same time, making the cause undisputed (and still…).

This is something that has been known about viruses for a long time but has received little in the way of scientific or medical interest, such that there is no treatment. For many millions of people, missing from their lives, living with ME/CFS, their illness was similarly triggered by a virus, just different ones at different times. So there is a vast knowledge base within this community and the disabled community at large, we tried to tell people as we entered lockdown, as a pandemic was looming – this will be a mass disabling event, prevention is the best cure – if not prevented, there will be a good chance that around 10% of infections will result in post-viral illness. But dominant narratives prevailed – those who have not been to these places deny they exist, refuse to believe it would ever be a place they would visit. It’s important to listen to disabled people, to listen to the sick, we know things. Susan Sontag wrote about the two passports we are all issued with when born – for the Kingdom of the Well and the Kingdom of the Sick – the Kingdom of the Sick is the place we live.

Nearly all of us have either lost someone due to Covid-19 or acquired a disability (or further disability), or both. A universal experience of grief is something that might have brought us together.

However, despite early positive signs of community building, when, in 2020 the general public were turning to disabled people, well used to living in their own lockdowns, who were sharing tips and advice on how to cope, did not last. Online access that had opened up enabled everyone who was now housebound to have a social life, attend the theatre, concerts, so many new things were suddenly online and openly available to everyone. Yet in recent years this has also since been retracted.

This week the UK Government has announced plans for (further) cuts to disability benefits. After all, if you can’t claim support for being disabled, surely you are no longer disabled?? Amidst a fireball of awfulness, this is happening while:

- assisted dying is also being debated, suggesting disabled and chronically ill people might be better off dead (an overt message I have also explicitly been told) rather than be properly supported,

- we continue to live through a disabling pandemic,

- Long Covid services are being cut and current figures could be as high as 1 in 10 people who now have Long Covid^[2],

- any online access afforded during lockdowns has been withdrawn,

- there is insufficient accessible housing, insufficient affordable housing, a lack of accessible work opportunities, lack of home working opportunities, lack of accessible public transport,

- an escalating cost of living, an absence of social care, no treatment for Long Covid or many other energy-limiting and disabling post-viral conditions (like ME/CFS) and waiting lists for everything continue to grow. This week, Norwegian research found that almost no ME/CFS patients return to work^[3].

The current system already rejects claims so regularly, around 70% of those that are taken to tribunal (this is a court hearing that follows an appeal) are awarded by the judge. This alone must cost an incredible amount to process, the system is designed for people to drop out, give up… many do^[4].

These further cuts are going to cause even greater suffering, and an inordinate amount of stress, as we each anxiously wait for the next benefits review, as those newly disabled are refused help, as benefits are reviewed and downgraded or refused entirely. More people will die as a result^[5] and the UK government’s austerity measures have already been linked to over 335,000 excess deaths in the UK^[6]. The DWP has yet to release the reports relating to investigations that found claimants of disability benefits having unmet needs, but a BBC investigation in 2021 found 82 people to have died as a direct result of their actions since 2012^[7]. The government's own estimates suggest that the measures proposed today will plunge a further 250,000 people into poverty^[8]. Independent figures suggest this is closer to 400,000. Four million disabled people in the UK are already living in poverty^[9].

In 2016 the UN found the UK in violation of International Law in its treatment of disabled people, and in 2024 they found that the UK government had done nothing to rectify the situation. They reported “that austerity and welfare policies were leading to grave and systematic violations of Disabled People’s Human Rights”. Last year their report documented evidence of the country having regressed even further.^[10]

Disabled people in work are also paid less than their non-disabled counterparts, do not have the career progression a non-disabled peer will and on top of this it costs more than £1,000 per month extra to live as a disabled person^[11] – this is what the PIP payments are supposed to address^[12]. You’re probably wondering why I’m telling you all of this, after all, I’m just a nature writer.

2) How do we make people care about us?

But numbers and facts make little difference, they don’t connect with people in a meaningful way. Confronting the reader with rational argument and reason does not change people’s minds. They do not make people care. Only storytelling changes things – for the reader to develop empathy, for the reader to imagine themselves in my/your position. And this shouldn’t be the case, to tell people that they will also, one day, become sick and disabled, if they aren’t already. This feels threatening, confrontational and it risks people disengaging entirely. It also shouldn’t make a difference, it should be ok to expect people to simply care about others. Denial is strong and needs to be crept up on carefully, thoughtfully, almost without being noticed. We must carefully curate our stories to be the most convincing, most readily identifiable, engaging, the protagonist must be the epitome of good moral character, the ‘ideal’ kind of disabled person. We need to take the reader gently so that they trust us, warm to us, want to continue reading us…

I, like a third of the population in the UK, live with chronic conditions. Like one in five, I live with a disability. I have been sick for nearly 14 years (but have been living with disability for longer). My whole adult life I have tried to justify, explain away, reason, question, and doubt my body. I have heard many different stories told about my body, I have been subjected to medical and societal gaslighting for decades. It has taken me ten years (thirty years depending on when you start counting) to get a diagnosis, longer to get healthcare support, all of this has been through (expensive) privately funded medical appointments and years of independent research – things unavailable to many.

Applying for benefits was/is humiliating, degrading and devastating, not because I need to ask for help, but because of how the system treats you and makes you feel when you do.^[13]

The emotional and physical burden in seeking the support my body has needed, has taken an insurmountable toll. In being ‘awarded’ benefits – as if it is a prize – I am all the more conscious, at a visceral level, that this is not a comfortable place of security. Phone calls, text messages, emails, letters, all checking, testing – are you still worthy?

In a bid to explain, to justify, to seek understanding, I have turned to writing. Stories are ultimately all we have, all any of us have, and this is how things change, but change is slow. During some of my sickest years I have created a book which, at its core, is about valuing disabled people, a plea to make readers care.

What else can I do to make people care about disabled people? I have genuinely googled this in the hope of finding something else I might be able to do. I have connected with a cognitive psychologist hoping to learn what it is about human brain function that enables us to so furiously deny care, to so vehemently double down on hatred towards those most vulnerable in society and find them to blame for their situation, for the state of the country. I return again to stories,

Will Storr

‘s book The Science of Storytelling reminds me that all we have is stories. He tells me that people change through empathy, through emotional engagement with stories, through imagining themselves in the protagonists’ shoes and being moved. This, however, requires a range of protagonists’ being represented – written by a range of authors with a range of experiences. Those precise experiences and voices so often silenced by society, and in publishing, the already marginalised.

I have been writing for years in a bid to share knowledge and understanding and hoped things would be different this time, but still it continues. Denial, anger, blame, shame, a cycle of hatred. In the words of Abi Palmer on Instagram this week, “PIP should be the bare fucking minimum”.

My nervous system is constantly being inflamed and re-ignited, prodded by the news alerting me – fully and viscerally – to the fact that I am deemed unworthy, perpetuating and exacerbating my ill-health. My body, simply for being disabled, is regarded as less than, inferior, and that I should be ashamed, guilty, responsible, not only for living in a disabled body, but that it requires additional support, has additional needs – how dare it! I should keep quiet, be grateful, apologetic, deferential. These are all messages I have implicitly internalised over decades.

So I find myself desperately googling, ‘how can I make people care?’ because this is what I need to happen. I cannot enter into debates on why I or any other disabled and sick person should be entitled to enough money to survive, we should not have to explain ourselves. When the starting point to a government’s plan is to willfully make a further 400,000 people live below the poverty line there is no reasonable argument.

Meanwhile another man, ‘David’, is reported to have been found dead in his home just weeks after the DWP removed his benefits for failing to return a benefits form^[14]. You cannot be so sick you cannot claim benefits is the other key thing to remember. I, like many others, was not able to claim benefits for a long time because I did not have the cognitive capacity to know what I had to do or how to navigate the many processes. I did not have the capacity either to ask for help, I did not know where that help might be. David’s sister told Disability News Service “He was already on the breadline, so I think it would have been devastating for him.” He had left a note: “describing his deteriorating health and state of desperation”. He likely died on 19 February, after 25 years of illness.

“David had ME, fibromyalgia and diverticulitis. He lived with severe fatigue, “mental fog”, recurring flu and incontinence, and limited mobility. His PIP had been removed on 4 January, “after he failed to return the lengthy form that he needed to fill out as part of a review of his claim ordered by DWP”.

His sister said he would not have been well enough to walk to the post-box to post it, even if he had been able to fill it in, because he could “barely make it to his gate without falling over”.”^[15]

David did not have the money to mend his broken mobility scooter, nor the credit on his phone to call for help. He had run out of incontinence pads.

It was a matter of pride, to be independent, to be able to provide for myself, when I was younger. This is a falsehood we are all led to believe, especially growing up in a Conservative led era of the UK, to own my own home and to be able to pay the mortgage, these were the important things in life. Things have changed a lot since the 1980s and 90s, principally I have learned that this is not a creditable character trait of mine, but a fortunate chance of luck. Similarly, my disability is not a character trait (or flaw), although it affects my entire character and personhood. My disability is simply an unfortunate chance of luck, None of this is anyone’s responsibility, least of all mine.

The level of denial is so vast – that the country continues to further disable people with its planned cuts simply by announcing them without checking the reality of the situation first – without caring about the reality of the situation. The fact that they see a lot more disability in the country after five years of a pandemic, when we have (almost) all witnessed trauma and great loss, and they have decided that the best way to reduce the numbers of people disabled and chronically ill is simply not to count them – by refusing benefits they are entitled to there will be less people on benefits and therefore less people will be disabled.

There is no new plan for treating people or supporting them, no new initiative for the hugely needed social care support, no new plans for public health interventions (which might prevent even more people becoming disabled), accessible public transport, accessible housing, affordable housing, accessible workplace environments, home working options, all of which could help (some) people to get into work – and certainly to have a better quality of life, with the potential to reduce the burden on mental health services and anywhere else this need spills out into. God forbid we might simply be able to enjoy a quality of life for its own sake.

I have been holding my breath since the last election, felt relief at the end of the last chaotic brutal government and 14 years of cuts and austerity, but acutely aware that nothing had been declared about disability from the incoming one. We (disabled people) have collectively been holding our breath, waiting for that shoe to drop and the knife of further hatred of disabled people, of blame and shame and benefit cuts, and here it is.

3) Pocketful of hope

It’s a rage I carry constantly, a rage that burns only brighter and longer. A rage that in comparison feels ridiculous next to trying to write or promote a book – but what else can I do? How else can I change people’s minds? Even if only one.

For a time, there seemed to be pockets of hope – Helen Needham interviewed me for Radio Scotland and told me how much she had learned, how she would see things differently, now that she had read Moving Mountains. The reviews that came back from early readers similarly echoed – this would be the change for nature writing that has long been needed, to develop the diversity in publishing and this field especially, this is an important book. And yet, earlier this month I saw a post from the Wainwright Prize, proclaiming their support of diverse voices and not one of the books they shared were by a disabled author. And there is no excuse now not to know a disabled nature writer, least of all the Wainwright Prize who had spotlighted Moving Mountains last year, who have longlisted Polly Atkin and Sally Huband’s books. Along with Abi Palmer, Carol Donaldson, Alice Tarbuck and Louisa Adjoa Parker, Nic Wilson’s book is forthcoming, and another from Khairani Barokka [her most recent collection, amuk, has just been longlisted for the Jhalak Prize], Kerri Andrews has another out this year and Kate Davis has another book out this month too. Books are being written and (sometimes) published. But the industry is reverting to type too, it is reverting to the narrow versions of human-kind (unkind), of inaccessible events, in-person only, disability being an after-thought at best. And this is just a small part of the world, a small part of the creative industries.

There is so much more we (as a country) could be, if we cared for disabled people – if we listened to disabled people. There is so much more we could learn from one another, so much more we (as disabled people) are capable of, not in a productive capitalist way, but in developing and sharing new perspectives, new understandings and experiences, and the immense strength and compassion the disability community contains, despite everything – let alone the basic human right simply to enjoy our lives. We can all be so much more if allowed to, simply surviving is not good enough and we are not even allowed this. There are so many things I would rather be doing, using my time and energy on, than defending my right to survive, the right of disabled people to be allowed to live in the UK in 2025. The proposed cuts are brutal and will kill more people, we cannot (as the sixth richest country in the world) allow this to happen.

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To oppose the current proposed cuts write to your MP and complete the review – email address at bottom of page to make your thoughts and feelings known https://www.gov.uk/government/consultations/pathways-to-work-reforming-benefits-and-support-to-get-britain-working-green-paper

Read Scope’s open letter & add your name here: https://campaigns.scope.org.uk/page/165719/petition/1?ea.tracking.id=website&_ga=2.67023534.1414861939.1743256632-371012454.1743256632

Invite your MP to get involved - there are many ways, Scope have an event you can invite your MP to: https://campaigns.scope.org.uk/page/166909/action/1?ea.tracking.id=xooi9irm&_ga=2.67023534.1414861939.1743256632-371012454.1743256632

Read Disability Rights UK’s response to the Green Paper and 25 ways the government could halve the disability employment gap: https://www.disabilityrightsuk.org/news/2016/november/druk-makes-25-recommendations-halving-disability-employment-gap-consultation?srsltid=AfmBOorN_0_oUfNkWGQZFK-GIAIGt5FMjcdRiIhSLyz2DBlNI0eKPmIy

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Read:

John Pring’s The Department: How a Violent Government Bureaucracy Killed Hundreds and Hid the Evidence. (Pluto Books)

Crippled by Frances Ryan (Verso Books)

The War on Disabled People by Ellen Clifford (Bloomsbury)

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Preorder:

Rachel Charlton-Dailey’s Ramping Up Rights: An Unfinished History of British Disability Activism (Hurst)

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For more disabled and chronically ill writers and creatives on substack take a look and follow these accounts:

Caro Clarke -

Caro Clarke

Alec Finlay -

Alec Finlay

Laura Elliott -

Laura Elliott

Victoria Bennett -

Victoria Bennett 🌼🐝🐺

Elspeth Wilson -

Elspeth Wilson

Letty McHugh -

Letty McHugh

Emily Bazalgette -

Emily Bazalgette

Josie George -

Josie George

Sinéad Gleeson -

Sinéad Gleeson

Esme Weijun Wang -

Esmé Weijun Wang

Sonya Huber -

Sonya Huber

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^[1] https://www.theguardian.com/world/2025/mar/23/key-lessons-of-covid-are-being-forgotten-uk-scientists-warn

^[2] https://www.nature.com/articles/s41579-022-00846-2

^[3] https://www.sciencenorway.no/chronic-fatigue-syndrome-diseases-me/almost-no-me/cfs-patients-return-to-work/2482762?fbclid=IwZXh0bgNhZW0CMTAAAR2TkcnymLYd0fcuIdniaOcZcVqO6R4A-vzI6OkTYQSCZpGVjrYm-k4nzhs_aem_Nz-Cirb-PAdpvO5ytqHovw

^[4] The benefits in question include PIP (personal independence payment) – the clue is in the name – a payment made to account for the increased costs incurred by living with disability, such that we might be able to enjoy some independence (for instance, but not only, additional travel costs, mobility aids, wheelchairs, social care, medications, treatments not available on the NHS, healthcare not available on the NHS, additional costs of specialist dietary needs, heat pads, TENS machines, personal assistants, second opinions when you’ve been misdiagnosed, the list goes on, of adaptations, equipment and those endless extra expenses incurred in living with disability). Despite the narrative of disability benefits being ‘so easily awarded’ there are many expensive fraudulent claims – PIP is a benefit which the government’s own investigation found to have 0% fraud, the health-related component of Universal Credit and Employment Support Allowance were found to have 0.1% fraud#. 800,000 current and future claimants will be denied PIP under these new measures, 150,000 people will lose carers allowance as a result. With PIP will also go the health-related component of Universal Credit –-- currently assessed for by the Work Capability Assessment, which will be scrapped (hooray!), but replaced by the PIP assessment (hell no!), so anyone not meeting the even higher PIP requirements will also not receive the additional Universal Credit money (which will also be frozen, reduced, or disappeared entirely depending on when you get sick).

^[5] https://www.disabilitynewsservice.com/pip-cuts-will-cause-further-deaths-say-disabled-relatives-of-claimants-who-died-due-to-previous-dwp-reforms/

^[6] https://www.theguardian.com/business/2022/oct/05/over-330000-excess-deaths-in-great-britain-linked-to-austerity-finds-study

^[7] https://www.disabilityrightsuk.org/news/2021/may/82-benefit-claimants-have-died-after-some-alleged-dwp-activity-such-termination#:~:text=the%20member's%20portal.-,82%20benefit%20claimants%20have%20died%20after%20some%20alleged%20DWP%20activity,termination%20of%20benefits%2C%20BBC%20finds&text=Cases%20where%20Disabled%20people%20claiming,a%20BBC%20investigation%20has%20found.

^[8] https://www.theguardian.com/uk-news/2025/mar/26/spring-statement-2025-what-does-it-mean-for-your-finances

^[9] https://www.disabilityrightsuk.org/news/2020/february/nearly-half-everyone-poverty-either-disabled-person-or-lives-disabled-person#:~:text=In%20total%2C%20seven%20million%20people,Rowntree%20(JRF)%20research%20report%20.

^[10] https://www.inclusionlondon.org.uk/campaigns-and-policy/uncrdp/uncrdp-2023-24/report/

^[11] https://www.scope.org.uk/campaigns/disability-price-tag

^[12] (the maximum PIP award is less than £800 – an amount that only a third of claimants are awarded). An important point is also that PIP is not an out of work benefit – it is not means tested – it is for anyone who has been sick or disabled for more than a year (the legal definition of disability – disability is, despite what might be believed, a legally protected term). Access to Work, which is supposed to do what it says, is also underfunded and vastly delayed, and effectively unavailable to many, operating beyond the time frames often needed and only considers the practicalities of travel or equipment. Universal Credit is also not necessarily an out of work benefit, many people rely on this as a top up to their paid working hours.

^[13] I am not overstating the experience in describing it as traumatising. Everything is questioned and there is no solid ground. If there was ever a time I had considered taking my own life, it was during this process. I have been disabled further (and any recovery delayed) as a direct result. I had to push myself further than the limits of my body (and spirit) to persevere in applying and reapplying and appealing and going to tribunal – and then formally complaining about the person who assessed me (a circular process where, ultimately no one took any responsibility – DWP blamed ATOS, ATOS blamed the professional body they were registered with, and they blamed ATOS). It took three years. Three years lost, time when I could instead have been looking after my disabled body. So this week I have felt more than a little bit more broken by the announcements.

^[14] https://www.disabilitynewsservice.com/disabled-man-dies-in-poverty-and-squalor-after-dwp-removes-his-benefits-just-as-labour-cuts-pip-by-4-5bn/

^[15] https://www.disabilitynewsservice.com/disabled-man-dies-in-poverty-and-squalor-after-dwp-removes-his-benefits-just-as-labour-cuts-pip-by-4-5bn/