Latest news with #JoubertSyndrome
The Guardian
a day ago
- Entertainment
- The Guardian
The Memory Blocks review – playful and purposeful exploration of developmental disorders
Artist and film-maker Andrew Kötting returns to the themes of consciousness and memory (both individual and collective) in this playful and ruminative docu-essay, in which he is again working with his daughter Eden; she is at once his subject and his collaborator. Eden was born in 1988 with the genetic disorder Joubert syndrome; she draws and paints and often appears in Kötting's films. I have in the past wondered aloud if Kötting might tackle the challenges of being with Eden more straightforwardly. But perhaps that was obtuse of me; it could be that it is only this complex, layered, tonally elusive approach which refuses the conventional grammar of clinical concern does justice to the idea of seeing the world as Eden sees it. The film has Eden dressed in a blue gingham pinafore dress of the kind associated with Alice in Wonderland (and therefore, perhaps, associating her with the idea of a journey or pilgrimage which is often a trope in Kötting's films). She is in a group alongside other adults with learning-development issues and on the shop floor of a factory where they are pretending that they are producing 'memory blocks' with machine tools and 3D printers: hollowed-out metal blocks which are the containers or constituent elements of memory. They participate in the fiction that these blocks will stimulate consciousness and send them back in time to happy memories; 3D animated images of nuts and bolts float across the screen. They are a happy supportive group with a genial relationship with Kötting, whose voice can be heard off-camera. At one point he asks them where they would like to travel; one woman says Prague, Eden says France (a place of happy memories) and another man says Locarno in Switzerland, because he likes Von Kleist's ghost story The Beggar Woman of Locarno. Eden is also shown walking in huge landscapes, alone with her walking frame, or with her friends, or with others in fancy dress and costumes. These unselfconscious performances or enactments might be bringing us close to an understanding of what Eden thinks and feels – but maybe that isn't the point and perhaps Eden, or those close to her, have no great need for this kind of insight and the object is more a kind of quietist harmony. Either way, the calmly purposeful originality of Kötting's work is valuable. The Memory Blocks screened at the Edinburgh film festival.
Yahoo
09-07-2025
- Business
- Yahoo
I'm a CEO and mom of 3 with a disabled child. My husband stays home and looks after the kids — I sometimes struggle with mom guilt.
Sophie Condie is a mom of three. In 2024, she was promoted to CEO at the fintech company Shieldpay. She was concerned the promotion would impact her kids, one of whom has a genetic brain disorder. Condie said being a CEO is challenging, but raising a disabled child has made her better at her job. This as-told-to essay is based on a transcribed conversation with Sophie Condie, the CEO of the fintech company Shieldpay, from England. The following has been edited for length and clarity. I always wanted to be a mother, but I never thought I'd be a CEO. I have three kids, who are eleven, eight, and four, and I'm also the CEO of Shieldpay, a UK-based fintech. My first child, Reuben, has a rare genetic brain disorder called Joubert syndrome. At one point, I considered being a full-time mom and carer, but I needed the pace and demands of working. Raising a child with a disability has taught me a new level of resilience, and it's helped me be a better CEO. I met my husband when I was 25. When we started talking about having children, I made it clear I wanted to have my career as well. We had Reuben in 2013, when I'd already been in banking for roughly seven years. After he was born, we found out he had Joubert syndrome, which affects his breathing and muscles. He's non-verbal, non-mobile, and tube-fed. Initially, my husband and I shared the childcare and also employed a carer for Reuben. When he was around three, I left my banking job and took just under a year off to care for Reuben and for some other family members who had cancer. I considered becoming a full-time mom because Reuben needed me, and it would make sense if we had more children. After having my second child, I knew I needed to go back to work for my own mental health. I couldn't be a stay-at-home mom and carer. We got full-time care support so I could go back to work, and my husband was supportive. In 2017, I joined Form3, a fintech company. I adored the pace and demands of the job. After having my third child in 2021, I started thinking about my next career move. I joined Shieldpay as an operations director. A year later, I was made COO. In 2024, the company went through a restructure, and I was appointed as the CEO. The promotion happened quickly. I thought hard about how it could impact our family, but my husband encouraged me to take the role. My first task as CEO was implementing the restructure — a baptism of fire. Around the time I started, my daughter said to me, "You're the No. 1 boss now, not just No. 2." I asked how that made her feel, and she said it was a good thing. After a couple of months, she told me, "I don't want you to be the No. 1 boss anymore." It was an opportunity to talk to her about the situation. My focus was split across many things, so I was probably more distracted than I realized at home. Since taking the CEO role, the work has been harder, and I've put more expectations on myself. As a COO, I was focused on operating rhythms, rather than delivering pieces of work. As a CEO, I'm still focused on operating rhythms, but I have to contribute to things like our strategy and business plan. I have big ambitions for our company and feel a heavy duty of care to the team. While I'll always strive for the business to be successful, I know it's not a family. At the same time, when I'm at home, I'm not running a business, I'm part of a family, so I always try to be present and put my phone away. Recently, my husband decided to become a stay-at-home dad. With me taking on the CEO role, he was quite passionate about not employing more support at home. We have a carer who helps Reuben with personal care, medicines, and food administration, while my husband also does a lot for Reuben and our two other kids. I talk openly with my kids about why my job is important to me, while communicating that they don't come second to work. During the middle of the week, I typically only get home around 7 p.m., but I try to get home by 5 p.m. on Mondays and Fridays. At the weekends, I switch off from work unless something major's happening. I don't miss my kids' school events, like sports days and plays, but they know I won't be picking them up every day. I do struggle a bit with mom guilt during school vacations because my kids are at home, but they don't get to see me as much while I'm working. Having a child with extra needs has taught me so much about paying attention to nonverbal communication and what's happening in a room, which helps me as a CEO. I can peel back the layers and know when to ask more questions or provoke responses. Reuben hates loud noises or big physical reactions, so I have to be very measured with him. This has helped me be measured at work during intense scenarios. Being a CEO is the most demanding role I've ever had, but being a parent is much harder. Speaking to my girlfriends, it's especially common for women to feel they're not enough, but my advice to other parents who want to progress in their careers is to be kind to themselves. Do you have a story to share about parenting as a professional? Contact this reporter at ccheong@ Read the original article on Business Insider
BBC News
13-03-2025
- Entertainment
- BBC News
Hastings VR experience lifts curtain on neurodivergence
A father and daughter are set to launch a virtual reality (VR) experience they say will immerse people in the "extraordinary world" of a neurodivergent artist. Eden Kotting and her filmmaker father, Andrew, based in Hastings, East Sussex, created the Tell-Tale Rooms, which shows a 12-minute journey through Eden's imagination. It combines animation, archive footage and live action by Eden, who was born with the rare genetic disorder Joubert Syndrome, which affects the free VR experience will run from 13 to 18 March at the Observer Building in Hastings. "Hastings has a lively community of arts and artists, with the Kottings being a key part of this," said Becca Rose, OBX creative producer at Hastings Commons."We are thrilled that they can show this brilliant work in their home town."Eden, who was born in 1988, added: "The Tell Tale Rooms makes me happy, happy, happy."
