Yesterday was BBC Children in Need day. Schools and workplaces held collections in the lead up to an evening extravaganza of celebrity-led TV fundraising. The money raised will fund life-changing work across the UK.

Children in Need has been around since 1980 – just like me – headed up by Pudsey, the eye-patch-wearing-bear, who I recently learnt was only allowed to smile in 2007 – that’s almost thirty years of non-stop frowning.

I watched Children in Need as a kid and its format has remained largely unchanged ever since. It’s a night when celebrities take over BBC One and do unusual challenges, interspersed with emotive videos of children, many of them disabled, and their families, who’ve been helped by Children in Need funded projects. I don’t remember quite as many corporate fundraising segments though. Last night I was surprised to see long pieces celebrating contributions by Mc Donald’s, Asda, DFS, HSBC and Greggs!

I usually try to avoid spectacles like this because I find the way disability is presented and discussed problematic. It feels exposing to say this publicly though because Children in Need is such an institution. I’d have to be completely heartless to have a problem with it, but I’m not! In fact, it’s precisely because of how much I care about the disabled and neurodivergent communities I’m part of that I’m writing this.

I have several intersecting perspectives: I’m a disabled adult, who was a disabled child, who watched Children in Need. I also have a background in fundraising and have worked on many projects that Children in Need has funded.

So, there are a few things I need to be absolutely clear about:

First, Children in Need supports a lot of amazing work, with many of their projects providing vital support in innovative ways. Any criticism I might have of how the money is raised doesn’t reflect on the quality and importance of most of the work that it funds. But some of what’s funded risks compensating for stark failures in our social care system. When a young carer is providing personal care for their disabled parent it’s a tangible example of how adult social care is failing them both – I wrote about this a few years ago here.

Secondly, there’s a long history of disabled people questioning how our stories are used to raise money, most famously in the UK the ‘Piss on Pity’ protests against ITV’s telethon in the early 90s, and the Jerry’s Orphans campaign in the US. There are many excellent threads on social media articulating the current issues with Children in Need, including here and here. I’m adding my voice to the many others speaking out on the issue.

Thirdly, the context in which the show sits is important. Disabled people are massively under-represented in the mainstream media. We make up over 20% of the total population but only 5% of those working in TV. And almost two years of the pandemic have resulted in both increased barriers for disabled people and the repeated conflation of disability and vulnerability. Many disabled people have felt expendable and families raising clinically vulnerable children have been particularly let down.

Finally, I’m still working out how I feel, and I don’t have all the answers. This post comes from an open mind and I’m trusting anyone reading it to understand the reflective spirit in which it’s written.

Now, about last night’s show, I watched as much as I could manage and here are the main issues it raised for me:

What does it feel like to be a disabled child watching Children in Need? I know from my own perspective that as a kid I was desperate to see my neurodivergent-self represented on TV. I can remember bouncing round my home singing, ‘we are the children, we are the need’ at the top of my voice. To ten-year-old me being ‘the need’ was exciting. I felt a sense of importance ¬– we had a song, a whole night of TV and a lot of wet-eyed celebrities. It was the only night of the year when I saw experiences like mine reflected on TV.

But it also established in me the idea that I was faulty and needed fixing, an idea that took decades to shift. I’d hoped that the messaging had evolved a bit, but last night’s show was packed with the same damaging, tragic narratives that I’d I soaked up in the 80s and 90s: “Life will always be tough for Dave, but your help can make it a little better.” Last year’s theme song was literally ‘We Will Fix You’. It’s not only disabled children who’ll be absorbing these negative messages, their peers, teachers, families, and communities will all be absorbing them up.

Is making people feel sorry for children really the only way of encouraging donations? I know from my experience as fundraiser that a lot of thought and energy goes into understanding and evidencing the impact of projects. I’d like to see this explored in ways that don’t expect children to disclose the exact number of operations they’ve had, pose with medical equipment, or recount traumatic experiences. Do we need to be inspired by children’s strength of character or bravery for them to be worthy of support? I don’t believe that pity is the only way of raising money and I’d like to see Children in Need working with disabled people to imagine new ways of framing and contextualising our stories.

Why are children in need in the UK?
I was expecting the tragic depictions of disabled children, but I was less prepared for exactly how clearly many of the hardships being described should be placed directly at our government’s door. For example young people having to care for disabled parents or siblings, is a clear failure of our social care system – something I’ve written about before here. One film showcasing a youth project that tackles child hunger stated that 4.3 million children in the UK live in poverty. Project workers described how the situation had got worse in the last ten years. Britain is one of the wealthiest countries on Earth, children here should not be going hungry. So why are we turning to a yellow bear to solve this problem rather than demanding a solution from our yellow haired Prime Minister?

One film about a child whose dad had died of COVID filled me with a profound mix of sorrow and rage. This was partly because the child was a similar age to my friend David’s son ¬– David died from COVID almost a year ago – but mainly because children are still being bereaved by COVID. 1038 people died in the last week alone and our government isn’t taking even the most basic measures to save lives.

How much agency do the funded projects have in how their work is portrayed?
I’ve worked in places funded by Children in Need and understand there’s often an unspoken pressure to support the fundraising nights, either by hosting a celebrity visit, or by suggesting children whose stories can be showcased. There was little opportunity to influence how these stories were told or who they were focused on.

Who’s writing the links and narration?
In 2012 the BBC created a disability terminology guide: does this go in the bin for Children in Need? Why does this high-profile show get a pass when it comes to how disabled people’s experiences are discussed?

The way we talk about disability matters, and the programme I watched last night was littered with language that disabled people have identified as problematic for years. This included ‘special’ and ‘brave’ which made the top ten most offensive disability related words in a poll carried out by the BBC as far back as 2003. The word ‘inspirational’ was used so frequently I thought my head would explode! Surely we can find some better words to described disabled children?

Do the ends justify the means?
Some will argue that the amount of money raised by these events justifies the approach. We’ve never applied for funding from Children in Need because of how uncomfortable we are with their approach. It’s a tough decision though, because this type of support would help extend and develop our services in much-needed ways.

Ultimately though, the risk of damaging how disabled people view themselves and how they’re viewed by others is too great for us to feel able to apply. My guess is that there are other organisations which find themselves in a similar position.

Children in Need didn’t invent this type of fundraising, but as one of the most high-profile events in the UK, it could certainly lead the way in reimagining the entire approach.

To help get this underway I’d like to see them commit to the following:

• Consultation with disabled people at every stage of the fundraising and programming process

• A review of how the impact of projects is communicated and greater experimentation with the format and tone

• A language guide that promotes respect which is applied consistently across programming, fundraising, and social media

• Content that’s as barrier-free as possible and uses audio description, captioning and British Sign Language

These commitments wouldn’t solve everything, but they’d be a significant start to genuinely engaging with the concerns disabled people have been raising for decades.

The idea that disability can only be serious and sad is deeply embedded in our culture, and perpetuating this myth short-changes children. It’s time for Pudsey to become ally and commit to meaningful disabled-led change.