When I began to write a book four years ago about life for disabled women in Britain, I didn’t bank on it being particularly topical. Stuck in bed with chronic fatigue and pain in my early 30s, I wanted to write something that would connect with other women navigating pillboxes and heat pads alongside careers and relationships. And so I decided to interview more than 70 women and non-binary people with physical and mental health conditions – from famous actors to legal experts, musicians to psychologists. The result was a vast and varied catalogue of disabled life: from stories about workplace microaggressions and good and bad dates on the apps, to finding freedom (and judgment) using mobility aids.

What I didn’t anticipate was that as the months went on, and my word count went up, the disabled cohort I was writing about would grow to include more and more women – many of them even younger than me.

Against a backdrop of NHS backlogs, declining mental health, a cost of living crisis and a pandemic, disability in the UK has increased across the board; 16.8 million people are now living with a “substantial”, long-term condition, according to figures released last month – an increase of 700,000 in the past year alone. And if you’re a woman, the odds of you being among them increase.

These are not simply the aches and pains that come with an ageing society. One in seven women in their 20s in England and Wales were classed as disabled in the most recent census recorded in 2021 – and figures show significant rises in the numbers of children and under-24s who have a mental or physical health condition. Forget a nan in a bingo hall, the face of disability in the UK is now also generation Z in Greggs.

When politicians and the media mention the rising numbers of women and young people with disabilities, we largely hear about it in terms of how much they are costing the country. As the Daily Mail recently panicked: “Handouts offered through sickness and disability benefits bill will swallow up a quarter of income tax intake by 2030.” Even the government’s website explicitly states how much is spent on social security for working-age disabled people – the Treasury equivalent of pinning a price tag on our wheelchairs.

This isn’t just rhetoric – it translates to policy too. Just look at how the disability benefit cuts will arbitrarily mean that anyone under 22 will no longer be able to claim the incapacity benefit top-up to universal credit. Meanwhile, the combined cuts will hit single disabled women hardest – they make up a staggering 44% of those losing out, according to the government’s own figures.

It is not simply that this narrative frames the growing number of young disabled women as a burden on the rest of society. It’s also implied some of them aren’t really disabled at all. Whenever ministers discuss the forthcoming cuts to incapacity benefits for under-22s, they typically do not call this group “disabled”. The work and pensions secretary, Liz Kendall, routinely describes it as Labour taking the “option of a life on benefits” away from “young people”, as if their disability – and society’s duty to support it – disappears if you do not say the word out loud.

Alongside this erasure is a spate of articles in recent months claiming that social media are driving diagnosis of attention deficit hyperactivity disorder and accounts of chronic illness, and books by doctors (yes, even doctors) hypothesising that the problem facing an increasingly sick population is actually “overdiagnosis”.

Disabled women in the UK are increasingly seen as statistics and stereotypes – reduced entirely to our disabilities, or robbed of the dignity of being believed we have one.

That’s why, in writing my book, I made a conscious choice to talk to women with physical and mental health conditions directly. The marketing also aims to uplift disabled talent: every digital graphic or piece of merchandise is made by a disabled-led small business or creative. I wanted to put disabled women at the forefront of a slice of culture, to ask them about the inequality affecting their lives – their careers, families, body image – and spotlight their tenacity, contributions and humour alongside the inequality and struggles.

Cherylee Houston MBE shared how doctors had shamed her for “wanting to be handicapped” but that she is now proud of her disability. Marsha de Cordova told me about the headteacher who thought she should be institutionalised because she was blind – De Cordova was elected to parliament decades later. Sophie Morgan spoke about navigating her relationship with friends after becoming paralysed (and falling out off her wheelchair laughing with them).

It is not that this kind of representation alone solves ableism. In fact, too much focus on “visibility” for disabled people often comes at the expense of efforts to tackle the structural inequality we face. But the way disability is depicted in our culture and media – and whose voices are elevated – has a profound impact on how the wider public view it, and as a result, disabled people’s place in the country. It is not a coincidence that the MPs who will soon vote to cut disability benefits will statistically not be disabled themselves, just as the journalists who cheer them on will probably never have endured long-term pain, let alone pain while in poverty.

As more and more of us experience chronic health issues, I cannot help but think it is time to hear from the growing cohort of disabled women in their own words – and stop normalising others talking about or for us. It is possible to address the causes of Britain’s declining health while acknowledging the dangers of a narrative controlled by a dominant group that drip-feeds the idea there are “too many” of a minority.

Whether it’s a book in Waterstones window or a drama on the BBC, there is power in being able to see “the other” as a whole human being: someone who has a WhatsApp group with friends and a favourite song as well as possibly a benefits form. The only way the argument for decent support for disabled people – of any age or gender – will be won is when we are seen as people, no less nuanced or worthy than anyone else. It is easy to starve a statistic, much harder to degrade and dismiss a neighbour or friend. Perhaps that is the real reason to shine a spotlight on disability. Disabled women can finally be seen clearly: not for what they take from society, but all that they give.