Latest news with #DownsSyndrome
The Guardian
27-05-2025
- Health
- The Guardian
Ellie Simmonds: Should I Have Children? review – fails to properly tackle the stigma around disabled babies
For the makers of Ellie Simmonds' new documentary, Should I Have Children?, the most powerful moment of the show is clearly supposed to be when she finds out why she was given up for adoption. It is emotional viewing: her birth mother speaks of her difficult circumstances (she had kept her pregnancy secret), the purely negative information she had been given about Ellie's dwarfism, and, most poignantly, how she thought of Ellie every day in the decades before they met again. It is deeply moving, for Ellie and the viewer. For me, though, the most powerful moment is altogether less charged. It comes when Ellie visits David and Megan, whose pregnancy she follows after they are told their baby almost certainly has Down's syndrome. We watch them grapple with the ramifications of the diagnosis including their fears for the child's future and the decision about whether to terminate the pregnancy (90% of pregnancies involving a diagnosis of Down's syndrome are now terminated). David talks movingly of struggling with the idea of his child being bullied. Yet when Ellie visits them at home, everything has changed: the baby is there, and the couple are clearly smitten. 'All the worry completely evaporates the minute you see her for the first time,' David says, in an ordinary expression of fatherly love that is also a powerful statement about how the reality of disability is so often removed from the fear it provokes. While the documentary asks a lot of important questions, I wish it took a little more time to examine where that fear comes from, and how much it plays into people's decisions to terminate a pregnancy or give a child up for adoption. It's there briefly in David's comment about bullying, and in another he makes about worrying over who will look after their child once they no longer can, but it's not probed more deeply. The focus is on the medical, on the individual choice parents make about whether they can cope with a disabled child, but not on the question of whether, in a world that often provides little help to these parents and constantly devalues the life of their child, that is even a free choice at all. Ellie does mention the role stigma plays but the documentary would have been stronger and had a bigger effect on public attitudes if it had addressed this wider, social dimension. There are other important questions that don't get attention, not least the law that means that, in the UK, abortion is generally allowed up until 24 weeks of pregnancy, but is legal up until term if there is a significant risk of foetal 'abnormality'. Whether these laws are correct or not can never be fully answered in a one-hour documentary (or perhaps ever), but it does feel like an oversight not to even mention the disparity – or how it feeds into the issues that are addressed in the film. Ellie's own, personal dilemmas are also not fully addressed. We see her find out about her chances of passing on her dwarfism to any children she may have, but, again, the conversation is entirely medical. The ethical concerns are left unspoken, perhaps allowing audiences to conclude that passing on a genetic condition is always bad – even though that isn't necessarily true, and it's not clear Ellie believes it is (she worries that genetic testing will mean no babies with dwarfism will be born to parents with the condition). There is no assertion of disabled people's human right to a family life, or mention of how often disabled people's reproductive rights are systematically abused (in many parts of the world, including the US, disabled people can still be sterilised without their consent). There is also no discussion of the prejudices disabled parents, especially those with genetic conditions, face or the lack of services to support them; both of these problems feel crucial if the central question – should Ellie have children? – is to be properly addressed. Once again, the social aspects of this decision seem to be overlooked. The documentary is thought-provoking, and Ellie's genuine compassion for everyone she meets makes it a compelling and worthwhile watch. There is only so much she can cover in an hour and audiences will still learn an enormous amount. As she says, most people do not have to consider all these issues when they have a child, and it can only be a good thing to get the public to think about them too, especially in the judgment-free way Ellie approaches her work. But we must remember that for all the medical information, the decisions people make about having a disabled child or being a disabled parent are shaped by fear and stigma. We need to talk about that a whole lot more. Ellie Simmonds: Should I Have Children? aired on ITV1 and is available on ITVX.
South China Morning Post
24-05-2025
- General
- South China Morning Post
Hong Kong charity stages disco to help neurodiverse adults feel ‘what it's like to party'
Eric Wong Hok-pan loves buses. He is familiar with many of the routes in his home city of Hong Kong and knows what year some vehicles were built. Wong is particularly passionate about vintage buses – especially when it comes to photographing them. 'This one is old, built in 1998,' says Wong, proudly showing off his vast collection of bus photos on his Samsung Galaxy smartphone. Wong's hobby recently took a bad turn when he was bullied by a group of teenage boys while photographing his favourite subjects. Eric Wong Hok-pan and his mother, Amy Chung, at Hong Kong charity Love 21 Foundation's headquarters in San Po Kong. Photo: Kylie Knott Wong has Down's syndrome, a genetic condition caused by unusual cell division resulting in an extra copy of chromosome 21 that affects appearance and the ability to learn. It was not Wong's first experience with bullying, but the abuse left him traumatised and dampened his enthusiasm for photography.
BBC News
20-05-2025
- General
- BBC News
Garden inspired by boy with Down's Syndrome wins Chelsea prize
A garden inspired by a young boy from Dumfries and Galloway has won a RHS Silver Gilt medal at this year's Chelsea Flower Show. Scottish-based designers Duncan Hall and Nick Burton said they were "over the moon" to be presented with the award for the "Down's Syndrome Scotland Garden", which was inspired by Hall's eight-year-old nephew designers said the garden aimed to celebrate the joyful, unique qualities that people with Down's syndrome bring to society while highlighting some of the daily challenges and barriers they will be on show in London until 24 May before it is relocated to its permanent home in North Lanarkshire. Designed for the Scottish charity Down's Syndrome Scotland, the garden is part of a collection of show gardens being displayed at the prestigious flower and Burton said the garden incorporates a weaving path that takes visitors to two distinct areas reflecting the contrasting moods of calmness and this path, a water pool appears to be a barrier to progress, symbolising the daily challenges faced by people with Down's a submerged bridge within the water pool allows the 'barrier' to be overcome and allows visitors arrive at a welcoming shelter designed to look and feel like a warm and comforting 'hug'.The 'hug' has been designed to reflect the compassion, kindness and joy that comes naturally to so many people with Down's syndrome, the designers said. Hall and Burton said they where delighted to win their first silver gilt medal, and hoped visitors would take a moment to look a little closer and see the deeper meaning behind what the garden stands for. Hall said: "We hope our garden will allow people to reflect on the daily challenges faced by people with Down's syndrome, so they can reconsider misconceptions about their abilities, and appreciate the many joyful, positive qualities they bring on a greater level to society."Eddie McConnell , the chief Executive of the charity Down's Syndrome Scotland, said: "Duncan and Nick have captured the spirit of people with Down's syndrome brilliantly in their garden design while not shying away from some uncomfortable truths."People with Down' syndrome, like so many disabled people, still face prejudice and discrimination and that needs to stop."
The Independent
15-05-2025
- Entertainment
- The Independent
Teenager Florence surprises Charles with ‘awesome' hug
Teenager Florence McGrellis surprised the King with an 'awesome' hug at his final engagement of the day in Bradford. Florence, 15, launched herself at the royal visitor at a reception at Cartwright Hall, an art gallery and community cultural space in Lister Park. The King seemed to enjoy the gesture, smiling and patting her on the back. Florence was with a group from Pinnacle Performance 4 All, which is an inclusive Bradford fitness studio which aims to break down barriers to physical activity, especially for people with neurodivergency or long-term health conditions. Asked afterwards 'what was she thinking', Florence, who has Down's Syndrome, said it was 'awesome'. She said: 'Because I'm friendly and I'm very helpful, and I'm a hugger. 'And all my family are giving hugs. So I give them hugs.' She said: 'I felt very proud. It was also very exciting. I'm looking forward to meeting him again.' Asked what The King said to her, Florence, from Bingley, said: 'He asked us what do you do? And, what will you do in the future?' And asked what her friends at Titus Salt School, in Baildon, will think, she said: 'They don't know that I'm here but they will be very excited.' Pinnacle Fitness director Sophie Robinson was standing next to Florence. She said: 'Oh my goodness. I was slightly concerned that she was going to get rugby tackled to the ground by the security, but that didn't happen. 'You've got the grab these opportunities when you do, Florence, don't you? 'It absolutely amazing, really, really amazing.' She said: 'I was not surprised. If anyone was going to hug the King it was gong to be Florence.' Mrs Robinson added: '(The King) was really interested in the work that we do, and the different physical activity sessions that we run there. It was amazing.' Also at Cartwright Hall, the King was shown round the David Hockney Gallery to see a collection of the Bradford-born artist's work from the 1950s and reproductions of personal photos, on display in a public gallery for the first time. He also watched a performance by the Bantam of the Opera choir, a group of local Bradford City Football Club fans taught to sing opera by BBC Radio Leeds.
BBC News
09-05-2025
- Entertainment
- BBC News
McFly star says super fan at Swansea show was the sweetest
McFly's Harry Judd said super fan Joel Oates was "just the sweetest" after meeting him at a show following a chance encounter with his mum at a service Cerasuolo bumped into the band at Heston services on the M4 on her way home to Port Talbot and told them what a big fan her 24-year-old son had not bought tickets to their show at Tunes On The Bay festival at Swansea Beach because she did not think the family would make it after a trip to London, but Judd said they could get the family in for said after dedicating a song to Joel, who has Down's syndrome, "the whole crowd were like chanting his name - it was so cool". Speaking on the Alex and Harry podcast on Thursday, the McFly drummer said he had seen Joel in the crowd and described him as "just the sweetest" when he and his family came to meet them after the show. "He was like, 'right boys, I've got a couple of questions for you. First off, Tom, he's like, can I come to yours for Christmas?' Which was just too sweet."Tom said: 'Yeah sure'." Then Joel asked if he could join the band, "which of course we said yes to," Judd added. "He said he can jump around a lot, he can sing. And I said, 'that's pretty much what we do. You're in Joe'."Clare previously said she had taken Joel to Southend to see the band before and it took seven hours to get there."Every time we go he says I hope we could meet them and the fact he did meet them - well he is still on cloud nine."
