Scrolling through the articles by writer and campaigner Lucy Glennon is like flicking through an index of her personality and passions. There are the witty posts about her love of food – one recalling how she almost blinded herself with a Yorkshire pudding, another listing the worst substitutions from online supermarket deliveries (Twix instead of tampons). There are fiercely argued opinion pieces on disability, and slamming welfare cuts (“bullies in power … have no clue about the lives of those they are damaging”, she wrote) – as well as nods to her obsession with technology and Twitter. But it is the first article on her Guardian profile that explains why there will be no more.
“Imagine a constant pain all over,” she wrote. “A pain you are used to because it is all you have known, and you have it with you all the time, kind of like a friend.” Written in August 2008, it details with heartbreaking restraint what it is like to live with epidermolysis bullosa (EB), the brutal genetic condition that led to her death last month, at 29 years old.
The recessive dystrophic form of the incurable disorder that Lucy had is caused by a lack of collagen protein and causes skin and internal body linings to blister at the slightest knock or rub. It is progressive and can be life-shortening. Because the defects occur deep within the skin layers – between the dermis and epidermis – the effect is equivalent to a third-degree burn.
As Lucy’s condition worsened, the EB fused the fingers of one hand together, and the thumb to her palm. In her article she explained that eating the 4,000-5,000 calories a day she needed, to combat the energy she lost as her body fought to repair itself could pose surprising dangers – as even food could rip her oesophagus or mouth. Without bitterness, she touched on how restricting and isolating the condition could be – recalling the separate playground at school where balls were banned, and how using public transport was impossible.
But it is typical of Lucy that she ends her piece optimistically; briefly mentioning she is living alone in London, surrounded by friends, and “hopeful things will heal for real, some day”. It is also typical, say her friends, that she chose not to mention how brave it was to chase this independence.
Yet just four years later her happy confidence was shaken as she became one of the first of many disabled people across the country to fall foul of the raft of welfare reforms, which will affect 3.7 million disabled people by 2017-18, according to research for the Guardian. Critics claim the cumulative effects of cuts unfairly target people with disabilities – research suggests thousands could lose more than £20,000. While the government insisted it would protect the needy while ensuring those who can contribute do so, Lucy’s predicament showed how easy it was to fall through the gap.
Lucy was born on 3 December 1985, and her illness was “just something the family got on with”, says her brother, Vincent. Although her father, Ted, a steelworker, and mother, Kitty, a nurse, did not have the disorder – and nor did her older sister Sally – the parents discovered they both carried the gene for it because Vincent was born with it too. The family was particularly tight knit. “We never get tired of each other’s company,” says Sally. “We were great friends.” Dressing Lucy’s wounds could take up to three hours a day, while unexpected injuries were common. “On some days, she may have got a little dust in her eye, and her eyelids would be fused together and ulcerated. It was shocking – it caused a lot of pain. Our whole house would be in darkness – even in summer. It always seemed to happen on my birthday – my 16th, 18th and 21st,” she laughs. On other occasions, it was the comments or stares from strangers that hurt.
When Lucy was 10, their mother was diagnosed with ovarian cancer, just as their father was taking early retirement to spend more time with his wife and children. Nine months later she died. “The end came as a shock,” says Sally who was then in her 20s. “Her treatment was over, when I got a phone call to say she only had a little time left.” The family gathered at her hospital bedside, “but when we were going home, Lucy turned back and went to see Mum again, without us”. It was another week until Kitty passed away, but Lucy did not visit again. “Instead, she wrote her letters, telling her what she had done that day and what she had eaten for tea. I think she had said her goodbyes.”
In their grief and anxiety to protect the child, her father and siblings drew even closer, with Sally staying at home to ensure Lucy had some stability. “She was starting secondary school that year so we tried to keep everything as normal as we could. My brother and I thought about the way our mother had brought us up and instilled those values in her. At primary school, we were told she was bright and could go to university, so we just focused on her.”
Despite having to leave lessons early to avoid being hurt by jostling classmates, Lucy soon had a small knot of friends. Her best friend, Nicolette Butler, soon discovered Lucy was “hilarious, the funniest person I had ever met”, seldom talking about her EB – few people knew much about it and the agony it caused her. Much more obvious was a passion for chocolate – especially Cadbury Mini Eggs. Lucy’s love of technology allowed her to bypass the restrictions her body imposed on her social life; crowds may have been difficult but she could bring the world to her through blogs, chatrooms and later Twitter. Many of her closest friends met her first online – often years after they had been attracted by her exuberance and funny one-liners. “I can confirm it’s not possible to twerk in a wheelchair,” she once tweeted. “It looks more like you have an itchy backside. You’re welcome.”
At Sheffield Hallam University, where she studied media and journalism, she was deputy editor of its student newspaper and wrote technology reviews for a national magazine. And it was clear to everyone that she wanted more than a quiet life in Rotherham. Despite the severity of her condition, she was determined to travel, taking trips to Belgium and Italy with her friends and enthusing about the sights – and impressive chocolate. “She would never think twice or let anything stand in her way,” recalls Sally. So, when she told the family she wanted to move to London to become a journalist, they supported her. But they were desperately worried at the idea of her living alone.
“I was petrified,” admits Sally. “We said: ‘Just get a job on a local paper.’ I felt sick, knowing how vulnerable she was.” But despite now needing a wheelchair, Lucy was not deterred. Nicolette explains: “She wanted to see what she could achieve on her own. It was really important to her to survive on her own and be somewhere exciting.”
Lucy moved into a mansion block in Camden, close to the hospital whose care she was under, which she had to attend almost weekly. She had home visits from a carer every morning and, without the full use of her hands, relied on ready meals rather than cooking. Crucially, the flat was also close enough for her father to be with her in 90 minutes if she took a turn for the worse. At the end of a short journalism course, she did a two week placement at the Guardian.
The features editor, now the deputy editor of the Guardian, Kath Viner, was impressed enough to ask Lucy to write the cover story about her disease – and the writer’s future seemed bright. “I expected her piece to be interesting – I didn’t realise it would also be so wittily self-aware, or so frank and clear-eyed,” says Viner. “I still think it’s one of the most powerful articles on disability I’ve ever read – without self-pity but full of longing; optimistic but not naive.”
Sadly, the internship taught Lucy that a full-time career in journalism would be impossible; she had to miss two days because of infections, and another for pain. “The week clarified for her that she was not going to be able to write day to day for a living,” says her friend and fellow campaigner Kaliya Franklin. “Partly because it is very difficult if you are not physically able to keep to deadlines. It was heartbreaking – she had the talent, she was a great writer and she was only 22.”
Despite this disappointment, Lucy continued writing and threw herself into life in London, visiting exhibitions, street-food festivals and becoming a member of the British Museum. She loved strolling through Bloomsbury, where she would pat every small dog she passed. Although forced to wear sensible shoes and comfortable clothes, she could spend hours window shopping for high heels.
She was brought up a practising Catholic and remained so as an adult. Lucy says her sister was once asked how she could believe in God when she was in so much pain. “She stopped and thought about it,” says Sally, “then said that over the years she thought of all the people who looked after her, and nursed her, and she sees God and love in every one of those people.”
Meanwhile, she was an enthusiastic supporter of the Sohana research fund, a charity dedicated to finding a cure. And, according to Sally, she put her charm to good use at fundraising events, “talking to these bankers, from her wheelchair, looking up at them with her big eyes – and asking them for more money”. But it was after the coalition government started cutting benefits that her activism took centre stage as she attended marches such as the Hardest Hit and writing furiously.
Explaining the cruelty of the heavily criticised work capability assessments conducted by the firm Atos, she wrote: “It is difficult enough coping with a disability … but to have to struggle though an examination that reminds you of everything you cannot do saps your energy and is really depressing.”
On Twitter she hit back at the vilification of people on benefits with characteristic wit: “Jamie Oliver’s remarks about people on benefits eating cheesy chips is unfair,” she wrote. “I’m on benefits and I prefer chips with aioli.”
Her anger was not driven by self-interest; after David Cameron’s promises to protect the most vulnerable in society, Lucy assumed she would be safe. But by 2011 she found the independence she had fought so hard to create was threatened. For the fourth-floor, two-bedroom flat she lived in, she had been paying around £440 a week in rent. She had only been eligible for local housing allowance (LHA) for a one-bedroom flat, which was £350. She made up the £90 shortfall from her disability living allowance (DLA) of £400 a month and income support of around £150 a week (she needed £50-£70 a month for specialist dressings for her skin, which are not available on prescription. The rest she used for bills, food and other expenses such as transport because she could not use buses or the tube). “I have very little money left at the end of the month as it is,” she wrote in an email.
But when the government introduced an exemption for disabled people who sometimes needed a carer to stay overnight, she discovered she was entitled to claim for a two-bedroom flat from April 2011. Although this should have been good news, the exemption arrived at the same time as LHA was dropped to cover, in theory, 30% of accommodation in the area, rather than 50%, so she was only entitled to £290 a week from January 2012 – less than the previous one-bedroom rate she had received and resulting in a rent shortfall of £150.
As her needs had changed, she had applied for a higher rate of DLA, but the Department for Work and Pensions lost her forms, and she had to reapply. She did not know where she would find the extra money, and was frightened she would have to move out of the flat in which she felt safe, and could not understand how she would find another home with the money she had to meet her complicated needs.
By September 2011, she was worried enough about the prospective changes to start selling her belongings on eBay. The items she listed were “two well-made winter jumpers, some DVDs of films I enjoy, and three handbags (from high-street stores),” she wrote. “I have nothing else nice that anyone else would want.” She was so shaken that her usual stoicism and unwillingness to talk about her problems was undermined and she turned to Franklin for help. With her assistance, and through a local housing advice charity, Z2K, she successfully applied for a discretionary housing payment to meet the £60 difference in benefits, but was told this would only be available until March 2012. Then, in February, her landlord told her he was putting up her rent.
Terrified about being forced to leave her home and without alternative accommodation, she could not hide her anxiety. In 2012 she wrote in an email: “It’s going to be incredibly difficult for me to get a council flat … I have a massive feeling of dread. If someone with my condition and the severity of my type was in a care home, I would cost at least £5,000 a week. I feel like I’m being pushed out of central London, and this will be happening to so many others.”
Franklin says that as time wore on, Lucy was so desperate she even considered stopping Boris Johnson, who cycled past her house on the way to work, to ask for help.
“Seeing your little sister in that state was shocking,” says Sally. “They were forcing her into dependency. She contributed so much and these things knock people down.”
The thought of moving further from the easy reach of her hospital, her family in Rotherham and the security of an area she knew was daunting. Luckily, in the end Lucy did not need to accost Boris. Through the housing advice project, and Franklin, her case was raised in the House of Commons, her DLA approved and an accessible one-bedroom flat found in King’s Cross. Although her carers now had to sleep in the lounge and there was no room she could use for her dressings, being on the ground floor meant she could also get an electric wheelchair – and for the first time go out alone without needing a carer or friend to push her. “I’m flying like a squirrel on wheels,” she tweeted happily.
Yet though she loved her freedom, the stress of the year took its toll. “We all noticed how much quieter she became in the past few years,” said Franklin.
Her sister agrees. “She was so upset, it had a big effect on her health. When you have this condition, it takes so long to come back from things. If you knock your arm, you might be all right in a week. With Lucy, it could take months – sometimes years. It’s an awful thought, but it did affect her health.”
Although she was still helping Sharmila Nikapota of the Sohana research fund raise money and awareness, tweeting about her enthusiasm for Game of Thrones and writing on her blog, her pain was getting worse and, in 2013, Sharmila says: “She emailed me and asked, ‘Can you tell me if there are ever going to be any trials for adults? I have been really suffering. The last week has been the worst pain in my life.’
“I just wanted to cry because research was something she really believed in, and she never gave up hope, but it just wasn’t happening fast enough for her.”
The next year, although Lucy was still as upbeat as ever, joking about infections (“As the old saying goes: feed a cold, starve a fever … have a takeaway Nando’s when you have lurgy. Or something”), Nicolette says her carers were having to do much more for her than before. “The last time I went to see her, I was working in the other room when she was having her dressings done, and I could hear her crying in pain.”
That Christmas, Lucy went home to Rotherham for the last time, and by January this year she was in hospital in London with an infection that affected her internal organs. Then, with her sister by her side, she died.
Afterwards, the family stayed with her for two hours, finally able to embrace her without causing her anguish. “For such a long time even kissing her on the cheek was painful for her,” says Sally. “Now we could touch her cheek or arm, my dad could pat her head.”
Franklin says that although she died young, it was the amount she achieved that her friends would remember. As her brother Vincent says: “Lucy knew what she wanted, and she went for it.”
