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One mother reveals two decades of her lonely struggle against the disabled care system

“There’s no support for adults,” Alison White was told, as her son Louis neared his 18th birthday. “There used to be, but it’s all been cut.”

As Alison White sips tea at a café in the shadow of St Paul’s Cathedral, huddling in her green coat against the early spring chill, she looks like any other visitor enjoying an afternoon in London. But this trip marks one of the first occasions in two decades that the 52-year-old has had a day – or even an hour – to herself. Her son, Louis, who has cerebral palsy and learning difficulties after suffering brain damage at birth, has turned 21 and received funding to attend a residential educational college.

He’s in his second term, and Alison White is finally “coming up for air”.“I feel like I’m looking at things I haven’t seen for 20 years,” she says, holding her mug of mint tea. “A bit like I’ve been in some time machine and popped up and things are different.”

Her life of 24-hour care – helping Louis with everything from chewing his food to using the lavatory, stopping him compulsively thwacking his forehead against hard surfaces, managing his severe allergies, enduring little sleep because of  his nightly distress – is chronicled with painful honesty in her recent memoir, Letter to Louis.

Alison and Louis. Photo: Courtesy of Faber & Faber

The book is both a lament and a battle cry. It describes navigating a state system that is stacked against anyone attempting long-term care for a loved one. “We felt like we were in the dark, going nowhere,” White says, recalling particular ire at a “speech therapist who thought we were deluded and didn’t recognise that Louis was trying to communicate with us”.

We are also introduced to the Glasgow midwife who dismisses what will later prove to be White’s symptoms of pre-eclampsia, the condition that brings Louis into the world eight weeks early by Caesarean and damages his brain; the teachers who ignore him falling from his walking frame; the occupational therapist from the council who insists he wipe his own bottom, forcing his parents to demonstrate, desperately and humiliatingly, that he cannot.

Alison and Louis in a friend's garden. Photo: Courtesy of Alison White

“You’re so exhausted as a parent, you don’t really know what’s out there for you,” Alison White says. “You have to be very, very vocal and pushy, and you’re not able to because you’re so busy with the caring role.”

It wasn’t until Louis was six that White and her husband, Greg, received the results of a scan showing the boy had severe brain damage. Until then, they were told, “your son will go to a normal school” and to “wait and see” regarding his progress. They had two more children, both of whom swiftly overtook their older brother, physically and mentally.

White remembers feeling “completely jaded” when the family took Louis, aged six, to see a music therapist, provided by a charity. “All sorts of people come up to you claiming miracle cures.”

But in one of his early sessions, a pianist sang Louis a welcome song – and he sang his first word back: “Today!”

“The point when he was actually able to speak, that was quite incredible,” White recalls. “He could tell us what it was he was thinking and feeling. A lot of his behaviour was linked to frustration [from being unable] to communicate… it’s fascinating. What I’ve learned is as human beings, we all desire the same thing, whatever your circumstances: you want to form friendships.”

Louis on the phone, aged seven. Photo: Courtesy of Alison White

Music was an introduction to Louis’s personality. He’s pitch perfect and plays the piano, guitar, euphonium and didgeridoo (one birthday, he demanded a long-necked Persian instrument called a tambura – “That’s not a tambura!” he yelled in disappointment when presented with a sitar).

White remembers a respite worker offering to take Louis to a concert, and her son’s reluctance when she suggested she could accompany him. “Horror went on his face,” his mother says, laughing. “That actually was a wonderful moment as a mother – that natural thing of being able to grow up. You want to have that separation from your parents when you get to your late teens.”

Louis as a teenager with his sister Tasha. Photo: Courtesy of Alison White

By the time Louis was nearly 18, the family had seen five social workers in eight months, so often were they leaving their jobs. The fifth one told them the direct payments and respite days (a meagre fortnightly, then eventually weekly: one day and night) to which they’d been entitled would stop after his 18th birthday.

“There’s nothing for adults,” they were told. “There used to be, but it’s all been cut.”

With no social worker available to help them “transition” into the adult social care system, the family was alone. “It was shocking,” White recalls, her eyes betraying her anger. “There was nothing provided for us.”

Louis. Photo: Courtesy of Faber & Faber

When Louis was first denied respite care at the age of 12, White’s husband threatened to leave, so great was the strain on their marriage. “You focus on what the child needs first,” White says, shrugging. “That’s hard on an adult relationship, without a doubt. But there was nothing we could do about it.”

They had come close to splitting up before, when Louis was three and they didn’t know the cause of his problems. Describing this moment in the book, White imagines jumping from a cliff with her son in her arms.

Greg stayed, but will not read his wife’s memoir. One has the impression that both parents are traumatised.

“I hope if people read the book they’ll realise you just can’t make cuts in that area at all,” White says. “For our society, it’s important there’s care for the weak and vulnerable, and people who don’t have a voice.” 

“Letter to Louis” is published by Faber & Faber

Anoosh Chakelian is senior writer at the New Statesman.

This article first appeared in the 12 April 2018 issue of the New Statesman, Syria’s world war

The University Challenge final. Photo: BBC iPlayer
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Why University Challenge is deliberately asking more questions about women

Question setters and contestants on how the show finally began to gender-balance its questions – and whether it’s now harder as a result.

University Challenge has long had a gender problem. When the show first started airing in 1962, some Oxbridge colleges were still refusing to admit women as undergraduates; in the decades since, women have been consistently outnumbered by men, with all-male teams still a regular occurrence. Those women that did appear were all too regularly criticised and objectified in equal measure by audiences: notable contestants like Hannah Rose Woods, Emma Johnson, Samantha Buzzard and Sophie Rudd have experienced intense media scrutiny and criticised the sexism of the show and audiences. In recent years, sexism rows have dogged the show.

How satisfying, then, to see two women carrying their teams in last night’s final: Rosie McKeown for winners St John’s, Cambridge, and Leonie Woodland for runners-up Merton, Oxford. Both secured the majority of points for their teams – McKeown with visible delight, Woodland looking unsure even as she delivered correct answer after correct answer.

But there is another site of sexism on University Challenge, one that earns less column inches: the questions. Drawing on all areas of history, science, language, economics and culture, the questions often concern notable thinkers, artists, scientists, and sportspeople. Of course, our society’s patriarchal hierarchies of achievement have meant that the subjects of these questions are mostly men. General knowledge is, after all, a boys’ club.

Over the course of this 2017-8 series, though, I noticed a shift. More women than ever seemed to be making their way into the questions, at times with deliberate reference to the inherent sexism of their lack of cultural prominence. On 5 February, there was a picture round devoted to female composers, with contestents asked to identify Clara Schumann, Ethel Smyth, Rachel Portman and Bjork from photographs, who, Paxman explained, are all “women that are now listed in the EdExcel A Level music syllabus after the student Jessy McCabe petitioned the exam board in 2015.” Episodes have included bonus rounds on “prominent women” (the writer Lydia Davis, the pilot Lydia Litvyak, and the golfer Lydia Ko), “women born in the 1870s and 80s” (Rosa Luxemburg, Elizabeth Arden and Vanessa Bell), and the female philosophers Mary Midgely, Philippa Foot and Iris Murdoch.

Elsewhere, questions raise a knowing eyebrow at the patriarchal assumptions behind so much of intellectual endeavour. A music round on famous rock bands quoted the music critic Kelefa Sanneh’s definition “rockism”: “the belief that white macho guitar music is superior to all other forms of popular music”. Another, on opera, quoted Catherine Clement’s Opera, Or The Undoing of Women, which explores how traditional opera plots frequently feature “the infinitely repetitive spectacle of a woman who dies”. “Your music bonuses are three such operas,” Paxman said dryly, to audience laughter.

University Challenge’s questions editor Thomas Benson confirms that there has been a deliberate attempt to redress a gender imbalance in the quiz. “About three years ago, a viewer wrote in to point out that a recent edition of the programme had contained very few questions on women,” he explains. “We agreed and decided to do something about it.”

Last night’s final included a picture round on artists with works concerning motherhood (Mary Casatt, Lousie Bourgeois, Leanora Carrington and Frida Kahlo) and a music round on Marin Alsop, the first woman to ever conduct the Last Night of the Proms, as well as sets of bonuses on the American writer Willa Kather and Byzantine historian and princess Anna Komnene.

Former winner Hannah Rose Woods is delighted by the increase in such questions. “I think it’s fantastic!” she tells me. “These things are really important in changing people’s perceptions about women in the past, and the way women’s contributions to science and the arts have often been written out of history. We need to keep challenging the idea of the White Male Canon.”

Last night’s winner Rosie McKeown says that while she didn’t necessarily notice a deliberate attempt to gender balance the questions, she was “very pleased with the quality of those questions that did come up”.

“Although it wasn’t in one of our matches,” she tells me, “I thought the picture round on female composers was especially good for highlighting women’s achievements.”

For all the enthusiasm for these questions, in the studio they’re often met with blank stares. While University Challenge questions are broad and imaginatively posed, there are some reliable revision topics and techniques: from Nobel laureates and the years of their wins to identifying famous paintings and classical music excerpts. McKeown says she has been a religious viewer of the show since she was 11 years old, and admits to watching reruns of the show to prepare. Shift the kinds of answers you might be looking for, and teams may struggle.

“Do we know any female British composers?” Leonie Woodland said weakly, looking at a picture of Ethel Smyth. Trying to come up with a female Muslim Nobel laureate, one contestant desperately suggested Aung San Suu Kyi. Asked to provide a first name linking an American concert pianist with the sister of Lazarus one male contestant still buzzed in with “Daniel”.

“Even if we didn’t always get them right,” McKeown tells me, citing that round on female philosophers, which saw them pass on every question, as an example, “it was great to see so many important female figures represented.”

“I don't think the questions about women necessarily affected our performance, but it’s certainly a very good thing that they were there and I hope that they’ll arouse people’s interest in the women featured and in their achievements.”

Benson believes that it hasn’t had a significant effect on performance. “The great majority of the questions that feature women are no different to any others, in that they sit firmly within the realm of standard academic general knowledge.”

He notes that they often refer to historical and background details, citing sets of bonuses on Canadian novelist Ruth Ozeki and British physicist Hertha Ayrton, which both teams answered correctly in full. “Though Ozeki and Ayrton may not be household names, the questions are definitely answerable and deal with central themes in their work and achievements.”

It’s easy to brush off the significance of a fairly geeky Monday night BBC quiz show, but University Challenge still regularly pulls in three million viewers. In any case, a show like University Challenge has a cultural significance that outweighs its viewing figures. It helps to shape our understanding of which subjects are intellectual or important, which are history’s most notable achievements, and who is worth learning about. To ignore questions of identity is to risk intellectual laziness, relying on tired ideas of canonical figures – or worse, supremacist propaganda, privileging the achievements of white men over all others.

Quite aside from making for less predictable and more enjoyable television, by including questions on the likes of Stevie Smith, Nella Larsen, Gertrude Stein, Myra Hess, Margaret Mead, and Beryl Bainbridge, University Challenge can diversify the mental encyclopaedias of its viewers, be it a tweed-wearing 60-year-old in Leamington Spa or an 11-year-old like Rosie McKeown with her own dreams of one day competing. It has a responsibility to do so.

Anna Leszkiewicz is the New Statesman's deputy culture editor.