Jo Whiley: I thought my sister would have to die for anything to change

There is a lot of joy in little glimmers of normality these days. For Jo Whiley’s sister, Frances, this includes being able to go back to bingo. “It means the world to her,” says Whiley, the BBC Radio 2 DJ. “And she won £30 last week, which was like she’d won a trillion pounds. She was so happy!” It was only in February that Frances was admitted to hospital with Covid and her family were told to prepare for the worst.

It was something the whole family had been dreading since the start of the pandemic. Frances has cri-du-chat syndrome, a genetic disorder that can cause significant learning disabilities and has other health issues such as diabetes. For the UK’s national lockdown in March 2020, Frances moved from her care home to her parents’ house. But when she moved back into residential care a few months later, the idea of the virus infecting the residents, says Whiley, was “your worst nightmare. I would speak to a lot of other people who had children or siblings in care homes, and we were all thinking the same thing – that we were petrified of Covid getting into the homes.”

Whiley had been trying to get Frances immunised through her local medical centre, but she was told they were sticking to the UK’s eligibility rules. “That was frustrating, because it seemed to us that people with learning disabilities should have been a priority,” says Whiley. It seemed doubly unfair when Whiley was invited to book her own vaccine. She had had a heart condition as a child, so had been prioritised, although as an adult she is extremely fit – she competes in triathlons. “I would have done anything I could to swap places,” she says.

We spent about 72 hours of a rather hellish time waiting to see whether she was going to pull through or not

We speak on the phone, her familiar voice warm and intimate. Whiley is at the BBC – it is a few hours before her Radio 2 evening show. In February of this year she had finished her show and was waiting for a train home to Northamptonshire, between London and Birmingham, when her mother called to tell her that some of the residents at the care home had tested positive, including Frances. Whiley went home and told her husband, Steve, and their children. (They have four.)

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They spent the next 24 hours in a state of low-level panic, waiting and trying to come up with ways to help. She read that an oximeter – a device to measure blood oxygen – would be helpful; one of Whiley's sons got one and took it to the home so they could test the residents.

Whiley travelled to London the following day to do her radio show. When she got off the train in Northamptonshire after work that evening, her husband was waiting for her. “He said, ‘Frances has been taken to hospital.’ And that’s when I completely freaked out.”

Frances, terrified, was a challenging patient – she had tried to escape and would not tolerate wearing an oxygen mask. “She fought everything that was given to her,” says Whiley. “We spent about 72 hours of a rather hellish time waiting to see whether she was going to pull through or not. We ended up, at about four in the morning, speaking to the intensive-care team, who said that there was nothing more they could do for her and we would be faced with the decision of taking her home and…” She pauses. “Just waiting for her to pass. And that’s when we went into overdrive and I was putting out messages on social media just saying: ‘Can anybody help? What can we do?’”

Before Frances contracted Covid, Whiley had been using her profile to add to the call for learning-disabled people to be prioritised in Britain’s vaccine schedule. She continued to do so after Frances’s diagnosis, even though it was too late for her sister and some of her friends in the care home – one of whom died from Covid. “I did have a moment in the middle of the night and turned to Steve and India, my daughter, and said, ‘God, I think Frances is going to have to die for something to happen.’” The line goes silent, and I think the signal has been lost until I realise Whiley is fighting back tears. After a while she says, voice breaking, “Thankfully, she didn’t.”

Days later the UK government confirmed that all people on the GPs’ learning-disability register would be prioritised, meaning 150,000 people would be offered a vaccine more quickly. “I’m very grateful to my sister for having made this happen,” says Whiley.

Does she think that her sister’s experience – and the way she and others were not prioritised – reveals wider perceptions about learning-disabled people and whether their lives are valued equally? “I think there has been an enormous lack of awareness,” says Whiley. She says the range of learning disabilities and their varying level of needs is huge, but many people “don’t have many advocates, they don’t have people speaking up for them. So they rely on others to stand up for them, to have those conversations, to point things out when things are not right and need to change. That’s what I really want to be involved in, those kinds of conversations, and I think we always have as a family.”

Whiley is two years older than Frances. They grew up in Northamptonshire, where their mother ran the village shop and post office and their father was an electrician. It feels as if Whiley has now, at 55, taken on a bigger advocacy role for her sister. “I think I used to sit back and just let my parents do everything. I feel like now is the time to take responsibility.” It is almost “like you know this day is going to come”, she says.

Frances is never been one of those people that I felt sorry for, or that anybody could feel sorry for, because she's just a huge bundle of joy

Not that Whiley feels weighed down by it, she points out. “I really want to point out that Frances is the most joyful character. She really enjoys making people laugh; she’s very entertaining. So she’s never been one of those people that I felt sorry for, or that anybody could feel sorry for, because she’s just a huge bundle of joy. She’s got flaming red hair; she’s got the flaming temper to go with it. She can have outrageous tantrums and be very difficult, but also she can be outrageously funny as well. More than anything, she’s extremely loving.”

This is not to say that caring for someone with Frances's needs has been easy (Whiley says care workers and carers are "the linchpins: they keep everybody functioning, all our families, and we should be looking after them in every way that we can"). In her 2009 memoir Whiley writes that, as a child, she would lie in bed with Frances, who barely slept, telling her stories all night to give her parents a rest. There were tantrums and destructive behaviour; holidays were out of the question because Frances could not tolerate a change of routine (although Whiley, without Frances, was taken by her parents each year to Sidmouth Folk Festival, which gave her a lifelong love of musical gatherings).

In the book, Whiley writes that rebelling as a teenager was not an option. “Frances did all the rebelling,” says Whiley now. “She needed all the attention. I just didn’t want to cause any more aggravation than what [my parents] were already going through. I think it’s just not in my nature; I’m pretty easygoing.”

Frances has brought huge positive aspects, including fun, joyful chaos and an awareness of differences, which Whiley says her children have adopted. “They’ve grown up with an auntie who’s got quite extreme behaviour, so they don’t bat an eyelid,” she says. As a child, Whiley was incredibly protective and would stare down anyone who dared gawp at her sister. Have things changed? Do people still stare? “Well, she’s so loud that it’s hard to ignore her,” she says with a laugh. But even now, on occasion, “you’ll get people tutting”.

Attitudes have changed and progress has been made, says Whiley, but there is further to go. “There needs to be more inclusivity and visibility in society, media, sport, employment, giving people with learning disabilities a sense of purpose, independence and self-worth. They should know they are valued members of society.” Treatment should be “first rate when it comes to their physical and mental health – and no one should underestimate the value and importance of social care”, she says.

When Whiley became a broadcaster it was partly with an eye on how she could bring Frances along with her. As a student she volunteered at BBC Radio Sussex, then worked as a researcher on 1990s TV shows including The Word, before being invited to try out for BBC Radio 1, where she and Steve Lamacq later presented The Evening Session. Whiley has introduced Frances to her favourite DJs and pop stars; when she was a presenter on Top of the Pops, Frances came to the studio to watch. Music had been a huge part of both their lives – as teenagers, they would take the bus into Northampton most Saturdays to buy a new 7in single each.

It was around this time that Whiley discovered Glastonbury and first went to the festival with friends. "We just got this coach, ended up at Glastonbury – had no idea what it was all about, what was going on," she says. "And I was just addicted right from the very beginning." As a regular presenter of the festival coverage, Whiley is involved in the celebration of Glastonbury across the BBC from June 25th to 27th – a weekend of sets, documentaries and performances recorded last month at an otherwise empty Worthy Farm.

Having lost a couple of friends, in recent months, to Covid, I just know that we have to be incredibly safe

Whiley's programme will look at the 1990s, when she used to present the coverage with John Peel. "I've been looking at all the cringey footage over the years of me and John, which is basically John being very droll while I'm being this complete buffoon. I was this little adoring fan, listening to every word he said and just saying stupid stuff that he could take the mickey out of."

Did she ever feel she could relax and enjoy it, or did it feel like work? She always loved it, she says, even the scary bits when she was trying to fill airtime when some rock band or other was late getting on stage. Staying up too late is all the bad behaviour she will admit to, including one occasion when she agreed to do a report for BBC Radio 4’s Today programme.

“I must have had about two hours’ sleep. I got up at maybe six o’clock and was walking around the backstage area to find the radio cabin. And it was just bodies everywhere; nobody was conscious. It was just me and the mud, regretting having drunk my last Jack Daniels at about four in the morning, and then blagging it, thinking, I think I got away with that. And then thinking, I’m never going to do that again.”

There were those Glastonbury glory years at the height of Britpop in the mid-1990s, when Whiley's radio show had become the centre of the cultural moment. "All those names were there. Robbie Williams was there in his bleached blond hair, when he'd escaped from Take That and just wanted to be in Oasis."

The other day, Whiley and one of her sons were in a cafe and they were playing Blur’s greatest hits. “Every song that came on, we were just going, ‘Oh my God, these songs are amazing,’” she says. “When you’re in the thick of it, it doesn’t feel like that. My kids keep saying, ‘What we wouldn’t give to have lived when you did,’ but Steve and I were just doing a radio show; we were plucked out of obscurity. We were interviewing Damon [Albarn, of Blur and Gorillaz] and Noel and Liam [Gallagher, of Oasis] and Thom [Yorke, of Radiohead], all these people, but it felt like we were all stumbling through something.”

The effect of the pandemic on the live music industry has been “truly devastating”, says Whiley. “Being on tour provides so many jobs, and so many people are without work at the moment; it’s so damaging to everyone’s mental health. I hope we start having live gigs soon. It means the world to people to have that shared experience.”

Does she think there was enough UK government support for the arts and musicians in particular? She pauses, choosing her words carefully. (Having been at the BBC for nearly 30 years, she appears wary of being seen as too political.) “I think it’s incredibly hard. Having lost a couple of friends, in recent months, to Covid, I just know that we have to be incredibly safe. I wouldn’t personally want the job of working out what’s the right and wrong thing to do.” But, she adds, “People definitely need to be supported financially.”

There will be a melancholy chill when festivals and gigs start again. “So many people have lost loved ones they will have been used to going to festivals with,” says Whiley. “People who should have been there and won’t be. They’ll be remembering the parent who isn’t there at Glastonbury with them, or the best mate, or the road manager.

“I suggested to my producer the other day that we play Elbow’s My Sad Captains, and she went, ‘Are you sure?’ because it’s all about lost friends. And I went, ‘You’re right. I’m not ready for this and, I don’t think the audience is at the moment.’ It almost heightens the sadness when people go on about how normal [life is starting to return]. Yeah, it’s more normal, but there’s also this underlying tragedy.”

And then there are those glimmers. Having come so close to losing Frances, things are more settled. Frances, now vaccinated, is happily back at her residential home, and Whiley can see the positive outcome of such a frightening experience. “Frances’s situation changed the situation for many people,” says Whiley. “To have lots of messages from people on Twitter, showing the photographs of their brothers and sisters with their thumbs up, smiley faces, and people saying how they thought it had saved their lives – it was just an extraordinary experience.” – Guardian

Jo Whiley presents The Glastonbury Experience 2021, which will be broadcast on BBC TV and radio from June 25th to 27th