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‘I KNOW WHAT FAMILIES WITH DISABLED CHILDREN ARE UP AGAINST’
And Baroness Gabby Bertin, whose brother died from cerebral palsy, is campaigning to help them
Achildhood memory that still amuses Gabby Bertin – now Baroness Bertin, currently the youngest member of the House of Lords – is a trip to a pantomime at the Fairfields Hall in Croydon, where her brothers Marc and Alex put on quite a show of their own. Marc, then aged around ten, suffered from severe cerebral palsy, which caused violent muscle spasms and rendered him unable to speak. ‘I should think we were the family no one wanted to sit next to,’ she laughs. ‘Marc was making lots of noise and his legs were fidgeting so our picnic bag had been shaking around. Alex compounded the situation by opening a can of fizzy drink, which exploded over the people in front. They managed to see the funny side; people can be so unbelievably kind.’
Life with the Bertins was frequently exhausting but never dull. Though Marc could not communicate, his personality shone through his limitations. ‘Marc lit up a room,’ she remembers fondly. ‘He loved slapstick humour. You could blow a raspberry and he would roar with laughter. He loved Mr Bean, anything with someone falling over. Poor Mum, we’d play racing games: I’d have him on my back, running up and down the sitting room. We were very happy and I miss him every single day.’
Marc lived until he was 12, when repeated illnesses and spasms weakened his body to the point where he could not go on. Gabby, now 39, was 16 at the time and distraught – but those happy memories helped her gradually get over her loss, and later gave her a unique bond with former Prime Minister David Cameron. She became his press secretary when he was a rookie, would-be leader, and was by his side throughout his time at Number Ten, until his resignation last summer. As a reward for her loyalty, he appointed her to the Lords, where she now intends to campaign on disability. David’s son Ivan was severely disabled (he too died, aged six) and Gabby was one of the few people close to the family who really understood the joys as well as the trials of having a disabled child. ‘When I started to work with David I would go round in the mornings and he and Sam would be feeding Ivan, and it really took me back; it reminded me of my little brother,’ she says. ‘Like ours, theirs was a very happy, optimistic family, but as my own experience gives me a little insight into what families with disabled children are up against, I’d like to be a voice for those who don’t have a platform.’ We are sitting in Gabby’s elegant, duck- egg blue sitting
room in West London, its shelves filled with books and photographs. How she comes to be living here is an extraordinary story in itself: while she was going through her divorce from her first husband, she put the house up for sale, and ended up marrying the man who bought it – but more on that later. The hall is cluttered with scooters and toys belonging to their children, Freya, four, and George, two. Her marriage has also brought her a stepdaughter, Orla, ten.
Gabby is in a jumpsuit and minimal make-up, her hair in a casual up- do. Later, in more formal attire, she will show me her office, up a winding staircase in one of the towers at the Palace of Westminster, with a view over the Thames and the Commons Terrace to Westminster Bridge, where terrorist Khalid Masood recently drove into a crowd of pedestrians, killing four people, and fatally stabbed a police officer. ‘I can’t help thinking about what happened there. Those poor families,’ she says.
Her political and personal lives came together last December when she gave her maiden speech in the Lords. Despite being beset by nerves – her sponsor Lord Grade had to remind her to keep breathing as she waited her turn – she spoke movingly about her brother and her ambition to help disabled people into work. She also reflected on her years as David’s press secretary. ‘I emerged from this role still committed to a free press – although I have to admit there were times when I looked to China with a certain degree of envy,’ she said. ‘What is more, I am grateful to those journalists for giving me the best training ahead of motherhood: interrupted nights, tantrums, unreasonable behaviour. Being a mother is a breeze in comparison.’
She made a point of saying she was not from noble stock: it was chance that saw her elevated to the Lords. She grew up in Croydon, South London, the daughter of a French father, Claude, and a Geordie mother, Lynne. Her parents split up when she was four, around the time that Marc was born (though Gabby says that was not the cause). Lynne remarried – Gabby says her stepfather Steve ‘was wonderful; he always treated us like his own’ – and had Alex.
When Marc was born, no one realised at first that there was anything wrong with him. He seemed to be a normal, happy – if quiet – baby. However, he rarely cried and after a year he still wasn’t sitting up. ‘My mother was a heroine, really; she wanted to try to keep life as normal as possible once it was clear there were going to be some big issues,’ says Gabby.
Lynne did everything she could to further Marc’s development, making several trips to the Peto Institute in Hungary, renowned for its educational programme for children with cerebral palsy. ‘Marc was so severely disabled I’m not sure it made a huge difference, but she was determined to help him as much as she could. In some ways that meant life became more difficult,’ says Gabby. ‘Every day before the school bus arrived he would feed himself breakfast. Of course, it would have been quicker to spoon-feed him – with all children at breakfast it’s a mess, but times that by 20, with spasms and Weetabix flying up to the ceiling…
‘He’d make a bicycle movement with his legs all the time, which was exhausting for him and made it a nightmare for us to get his trousers on, though he found that quite funny.’
Their lifeline was a local family who took Marc for an overnight stay every six months or so to give Lynne a break. ‘That made such a difference. For one evening, Mum could do something with us, or just do nothing. It gave everyone breathing space.’
As time went on, Marc became frail. ‘You could tell he had speed of mind, but he couldn’t articulate anything. It was frustrating and towards the end of his little life he got quite depressed,’ says Gabby. ‘The fits and spasms were exhausting and I think his internal organs gave up. It was a shock. He was in and out of hospital, but none of us expected him to die.
‘The comfort we took from it was that life had become a real struggle for him. We just wish we could have made it better, but that wasn’t possible. He was a trouper to keep going as long as he did.’
Gabby had always thought she would become a banker like her father, but she found life in the City dull and joined a pool of junior press officers at the Conservative Party. One day the head of press asked if she would look after David Cameron, a little-known leadership contender.
‘I met him and thought, “Gosh, he’s impressive.” Nobody believed he was going to win and it was so exciting when he did,’ she says.
‘I had some amazing experiences after that: there were receptions at Number Ten almost every other day for people who had performed amazing acts of bravery, or for sportsmen or world leaders, and I got to meet them. I made several trips to Afghanistan and flew on Air Force One. However blasé you get, that’s special – I half- expected Harrison Ford to pop out of the cupboard.’
Gabby was with David, first as press secretary, then as Number Ten’s director of external affairs (a job she swapped to after having Freya as it involved less travelling), right to the end. The morning after the EU Referendum vote was ‘not a good day in the office’. She was one of the people who tried, unsuccessfully, to persuade him to stay.
‘The end was difficult, of course,’ she says. ‘We’d been up all night. It was sad, but we accepted it. We don’t look
My experience gives me insight into what families with disabled children are up against
back with anger; we want to make it work and be supportive for Theresa May. She’s doing a great job.’
During Gabby’s time at Number Ten, David introduced her to the charity Kids, which supported him and his family in looking after Ivan. He is a patron of the charity and Gabby has since become a trustee. It is currently launching a new campaign, Give Kids Time, to boost its short-breaks service, which is run England-wide, providing 80,000 hours a year of ‘breathing space’ for families with disabled children. Charity workers come to the child’s home and will either care for them there (if they are unable to leave the house) or take them on a trip, such as to the park, the zoo or bowling – the sorts of treats ordinary children take for granted but disabled children rarely get to enjoy.
Families are usually referred to the charity by their local authority, which covers basic costs. All the extras – entry tickets, ice creams – are paid for by Kids. A series of short films on the charity’s website shows children joyfully clambering over equipment in one of its specially adapted playgrounds and on fun afternoons out, swimming and playing basketball. All Kids workers are trained: one day they might be chasing after a child with autism or behavioural problems, the next looking after a child who needs an oxygen tank or to be tube-fed.
Gabby says she fleetingly thought of volunteering for such work, ‘but after my brother died I found it all so painful. It was very difficult for years. That’s only begun to change recently and life has given me another way to help. I believe we’re on the cusp of something good. The Paralympic Games and the Invictus Games, which Prince Harry has been involved with, have been a huge success. People are waking up to what disabled people can achieve.
‘Yes, they need help and support, but no one is asking for special treatment, just a level playing field – in work, for instance. The statistics on people with learning difficulties finding jobs are shocking, with only six per cent in employment. Disabled people should be able to expect to get into work in the same way as you or me.’
Life at Number Ten was exciting but it was also all-consuming: ‘So many family times were ruined by me being on the phone.’ One of the casualties was her first marriage, to City executive Chris Glenny. It was an ‘absolute low’ when they broke up, she says: ‘I dealt with it by working hard, keeping my head down and waiting for things to get better.’
They did – much quicker than Gabby could have imagined. Having put their marital home on the market she moved into a flat but came back occasionally to show the house to potential buyers. One was Michael Grist, another City executive, who went on to buy it, having just gone through a divorce himself.
‘It was love at second sight,’ she laughs. ‘I thought it would be useful to be there if buyers had any questions so we met, but thought nothing more of it. Then, after he’d moved in, he sent a message saying: “There’s some mail here for you, do you want to collect it?” My first thought was to say, “Oh, just put it in the post,” but something made me hesitate; maybe the penny dropped. I asked if he could bring the post to Number Ten and offered to show him around. We had a cup of coffee. I really adored him after ten minutes… and the rest is history.’
She moved back into the house – ‘The neighbours couldn’t get their heads round it; it was, like, “She’s back!”’ she laughs – and was soon pregnant with Freya. ‘I was so lucky because life could have been very different. When you are in your tunnel vision of work you don’t meet people and you can see how easy it would be to forget to have children and a relationship, and let those things pass by.’
Gabby feels additionally blessed because she has seen some of her friends struggling to have children. ‘Freya is in full 100- questions-a- day mode, and it’s fascinating to see the way her mind is working. George just loves his hugs. “Hugs,” he says as he comes towards me.’
Life is a balancing act: not only is Gabby the youngest member of the Lords, but also one of its only working mothers (she also has a part-time job as strategic communications and campaigns director for BT). ‘There’s more than a bit of juggling,’ she says. ‘I’m fortunate that I have a part-time nanny and my parents aren’t too far away. Some days it works and others you feel completely frazzled and can’t put one foot in front of the other, but the wheels stay on the truck – just about.’
To find out more about short breaks for disabled children and their families, go to kids.org.uk