Latest news with #Lucretia
Wales Online
05-05-2025
- Health
- Wales Online
'My dad campaigned for justice for decades – now it's my turn'
'My dad campaigned for justice for decades – now it's my turn' Teacher David Edwards was infected with HIV as well as hepatitis B and C and campaigned for justice throughout his life Lucretia Edwards' father helped set up the Birchgrove campaigners group after he was infected with HIV and hepatitis B and C (Image: WalesOnline/Rob Browne ) Growing up Lucretia Edwards knew lots of things about her dad – he was well-read and interested in science and philosophy but never sports. He was disabled and walked on crutches but some things were kept from her and her brother. Like why her dad's toothbrush was kept housed in a travel container separate from theirs in the bathroom. It was only when she was around 25 she was told that her father had HIV and hepatitis C and was one of the victims of the contaminated blood scandal. The family has recently discovered he also had hepatitis B. David Edwards' early years were defined by his severe haemophilia. Born in 1935 he spent a lot of his childhood in Great Ormond Street Hospital in London. His treatment overlapped with the Second World War and he could remember the bombs of the Blitz hitting London and glass landing on his bed as windows shattered. For our free daily briefing on the biggest issues facing the nation sign up to the Wales Matters newsletter here. He wasn't ever well enough to go to school but he had a tutor in English and maths and went on to study philosophy at university. He was disabled and always needed the help of crutches to walk and was never able to play sports. That was the one thing he never had an interest in but he was, his daughter said, interested in everything else. "He had a very full life and was very positive," Lucretia recalled. In his early 20s, as a newlywed, he had a number of near-death experiences due to his haemophilia. When a treatment came out that could be administered at home. he took up the offer. It was that treatment, of Factor VIII plasma, which led to him being infected – first with hepatitis C and HIV but also hepatitis B, though it took years for that to emerge. David was interested in science and read the New Scientist. In the early 1980s it was David who approached medics at the University Hospital of Wales to tell them about the possibility of contamination. Article continues below His doctor told him it was highly likely he was infected with HIV but there was, at this point, no test available and he had to live with the knowledge he was most likely infected and the emerging details of what that would mean for his health. When testing started the diagnosis was confirmed. His daughter was, at the time, at university studying biology and had heard of the Aids epidemic and HIV but the family kept quiet. "We never spoke about it – it was never something that was talked about. I never asked any questions and my parents didn't talk about it because of the stigma that was associated with it," Lucretia said. "There was no treatments at that time so he just had to try and get on with life." The Factor VIII he was given led to his infection. "My father was horrified when he learnt the treatment came from drug addicts in the US," said Lucretia. David worked as a teacher at the then-Gladstone Junior School in Cardiff. "He was a very determined person and very charismatic. He was the sort of person who would talk to everyone," his daughter recalls. Throughout his life he would walk round Roath Park every day, weather-dependent. Her father, along with Gareth and Hayden Lewis, set up the Birchgrove group in Cardiff and campaigned throughout his life. He did a lot of research into treatments, participating in clinical trials for new HIV medications. The side effects were countless and "horrible". He would have to wake himself at 2am to take his medication "but he was so determined," his daughter said, "even though the side effects were horrible". David Edwards' early life was defined by his haemophilia but he became a campaigner "Life was difficult for my father but he was a very optimistic person," she said. "When I look back now, looking at what it must have been like for my parents living with that, not knowing and not telling us and not wanting to talk about must have been really strong to survive all that and keep going and keep a positive outlook." Lucretia was at the Senedd for a recent event to try lobby the Welsh Government to put pressure on the UK Government to speed up the compensation process for victims. A total of £11.8bn has been put to one side and promises made but the process is being criticised by those infected and a secondary group of affected people. "My father, if he was alive today, would have been campaigning for 45 years," she said. "Some say: 'Why are people questioning this? This was 45 years ago it happened.' But this is the reality – we're lucky to still be alive, to still be able to do some campaigning." She wants to see justice. "It's justice for all these people that have lost their loved ones through absolutely no fault of their own but through a whole fault of other things that have gone on – either with the government, with the medical profession," she said. "It just keeps going. "There are things that they could do now that would improve the speed of the compensation payments. To me the compensation payments are a means to bringing closure to people but also my father had to retire early. "My mother had to give up work early to care for him. My brother and I, when we were growing up, we weren't even told that he had this horrible disease. We weren't told until we were old enough and we've gone through school because they didn't want it to impact us through school and things. "It's bringing some sort of closure and also to try and financially support these people who have had to give up work, they've lost jobs, have had a terrible sort of existence really. I think the compensation payment sort of marks the sort of bringing justice, really, to people." Asked if she has any faith they will get what is owed to them anytime soon she said: "You can be very sceptical about why it's taking such a long time and why they're not listening. If you talk to the lawyers... they can see mechanisms by which it would quicker but they're not given the opportunity to talk about it. "People are not sitting down round the table saying: 'Okay – how can we speed up these payments'? If this were a commercial organisation and this was the issue people would be sat around the table asking: 'What can we do to improve the speed on this?'. Article continues below "The compensation scheme is quite complex but even so there's ways and means to improve the speed. For myself I've personally gathered the evidence that we need as a family to support my mother in my father's claim. But I could provide that to somebody now – there will be others out there like that. "The [UK] Government are talking at the moment about all the billions of deficit we started with and what the Conservative government have done. Well they've now got an opportunity to turn all that stuff around about what the Conservative government didn't do but you think: 'Is this a way to sort of potentially save some more money for the government in the future?' It's just not right".
Boston Globe
23-04-2025
- Entertainment
- Boston Globe
Lauren Wolk's new middle grade novel offers an escape to ‘Candle Island' in the 1960s
Lucretia befriends Bastian — who secretly sings opera and wants to learn Italian — and his cousin Murdock, who lost both her parents and secretly writes (impressive) poetry. Its plot-pace a gentle cantor, a main story line involves Lucretia caring for a baby osprey and quietly grieving the (off-screen) death of her father. High dramas include sharing each other's art or poetry without consent, and dealing with the snobbery and pranks of the summer resident kids. Get Starting Point A guide through the most important stories of the morning, delivered Monday through Friday. Enter Email Sign Up The island feels tinged in sepia-toned nostalgia — no computers, no cellphones. There's plenty of pie-baking, and grilled cheese sandwiches with apples. The novel never spells out what year it is, so I found myself searching for clues: When mom ends a phone call, Lucretia notes mom 'put down the receiver' — obsolete vernacular for 12-year-olds in the last decade. Advertisement 'I think it's probably around 1967, but I can't be completely certain,' Wolk, 65, tells me with a laugh in a phone interview from her Centerville home. 'I wanted it to feel a little timeless.' Advertisement Toward the end of the book, it feels like her thesis when one adult comments: 'Are all the kids on this island creative geniuses?' and Lucretia replies: 'Yes. All the kids in the world are…' And if Lucretia and her pals seem older than 12? Wolk is aware. 'Sometimes people say, 'Your characters are way too mature. That's not realistic.' Well, that's balderdash. I spend a lot of time with kids. I was a kid. There are a lot of very wise and intellectually curious kids,' she tells me. 'Those kids inspire me, and they end up in my books. And if they're not typical? Well, good.' I called Wolk ahead of two Cape events — Q. So what sparked 'Candle Island'? A. I'm involved with Advertisement Q. Is Candle Island inspired by a particular island? A. Probably Q. Lucretia tells us she's named after Nantucket Quaker/feminist activist Lucretia Mott. Why A. [laughs] This is like true confessions: I do very little research even though I write historical fiction, because I find research steers the story too much. I just research when I have a question, and often, as I'm researching this or that, I uncover fascinating things that influence the flavor of the book. I'm a pantser — I don't write with a map. I thought of [the name] Lucretia and looked for historical people named Lucretia. I'd heard of Lucretia Mott, but I didn't know much about her. I thought it was a lovely association. So many things in my books come from stumbling over information that lights me up. Q. You said you think this takes place in 1967. A. I can't be completely certain … but it's interesting. When you go out to those little islands, it's like a time-machine. They have computers, cellphones — but it's old-world, too. Strong families where, generation after generation after generation, they fish, lobster. You feel this sense of timelessness. I wanted to capture that. Q. There is plenty of old-school charm here. Like Lucretia biking to the library to look up a quote. A. Exactly. I always put my own childhood into things. Growing up on the Cape in the summertime, we went everywhere on our bikes. Advertisement Q. Bastian secretly sings opera by the cove. What inspired that? A. I don't know. [laughs] When I say I'm a pantser, I mean it. I shock myself all the time. I'm like: I have a first line. I have a setting. I have one character. Let's see what happens. Oh! There's a bluff. Let's take Lucretia to the edge. The wind is blowing. What's that she's hearing? I'm not an opera buff, but all of a sudden, Lucretia and I are hearing this singing. … I have faith in my characters to lead me somewhere interesting. Q. You say you're a pantser — but do you have any idea of plot? Did you know she was a painter? A. I spend a lot of time in my head before I start writing, just watching my character living. She'll do something that reveals who she is. In this case, she quickly revealed herself as somebody who loves to paint, and loves color. She's got — I don't call it synesthesia, but the way she interacts with the world is influenced by color. I knew she'd encounter other kids who were also secretive about their creativity. Q. You get into class differences, by having the summer residents versus the year-round kids. A. I think it was on my mind because of how the Cape works. When I was a kid, I was one of the summer people. We weren't rich summer people — I worked as a waitress. The way people treated me was eye-opening. So even though I'm a very lucky, privileged person compared to most, I am very aware of class differences and I find them upsetting. Advertisement Q. Did you always want to be a middle-grade writer? It never occurred to me. In fact, I wrote 'Wolf Hollow' for adults. My agent said, 'Oh no, this is a coming-of age story. This is middle grade.' I thought, 'OK, I can see that.' I really don't write for middle grades. I just write books that happen to have 12-year-old protagonists. Q. What were you like as a kid? A. I was a weird kid. I'm still a weird kid. An introvert desperately trying to be an extrovert. The things I was most shy about, I now love best about myself. I'm always telling kids: 'The stuff you're hiding, that's what you'll want to highlight later.' I was a highly sensitive kid, very attuned to everything around me, which can be painful. But it's a great way to feed your creative soul. Q. What were you trying to hide that you now highlight? A. Pretty much the way I see the world. It's hard. You're there with your friends, and all they're talking about is boys, all they want to do is go out. I would've been much happier just being alone. Some kids are loners. It's hard to be a kid and be alone. You're supposed to be figuring out the world. The best way to do that, in a lot of ways, is with companions. But I was and still am— boy, there's like a therapy session — most comfortable alone. Q. I feel that. For kids like us, there's something really relatable in this book. A. Yes. And it doesn't mean she doesn't want friends — it just means she knows who she is and what she wants, and it's hard to find those things when you're with other people. Advertisement Q. What do you want kids to get out of this book? A. That they should be their own authentic selves. Stand up for what they believe in. Express themselves in any way that feels right for them. They should be proud of who they are. Interview was edited and condensed. Lauren Daley can be reached at
