YouTube Star and Activist Claire Wineland Has Died Aged 21 - Dexerto
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YouTube Star and Activist Claire Wineland Has Died Aged 21

Published: 4/Sep/2018 16:07 Updated: 4/Sep/2018 16:13

by Calum Patterson

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YouTuber and cystic fibrosis activist Claire Wineland has died from a stroke following a lung transplant operation, at age 21. She had spent years spreading awareness and reducing stigma about the genetic disorder.

Diagnosed with cystic fibrosis at birth, Wineland harnessed the power of the internet to spread her message, sharing details of her treatments and day-to-day living, as she lived a full life in spite of the condition.

A Californian, she rose to popularity through YouTube and Instagram especially. At her two popular TEDx Talks, the first in 2011 when she was aged only 14, and another in 2017, Wineland spoke eloquently and powerfully about living with CF, the importance of self-worth and the stigma of illness.

“We view [sickness] as a curse because we don’t understand it. We view it as a curse from the gods, because we haven’t come to appreciate our own human suffering. But if we go through life and try to make something of ourselves, maybe one day we can realize it’s actually a gift.”

The ‘Claire’s Place Foundation’, started by Wineland, confirmed her passing on September 3, saying she went peacefully and surrounded by family.

They also confirmed that her organs have been made available for transplant.

In Claire fashion, she is an organ donor. Claire’s remarkable family were so happy for the other families that were now getting the calls that the organ they had long been waiting for was now available for transplant. They had been on the receiving end of that call just one short week ago.

We know Claire was loved all over the world. Your prayers, support and encouraging words, have been a huge source of strength for her and her family. Thank you from the bottom of our hearts for your massive amazing out pouring of love.”

500https://twitter.com/BernieSanders/status/1036818180801478657

Her mother, Melissa Yeager, has told CNN that Wineland’s right kidney has been transplanted to a 44 year old woman in San Diego, and her left kidney to a 55 year old man in California.

According to Wineland herself, she spent over 25% of her life hospitalized, but it didn’t hamper her zest for life and spreading awareness about her own, and all, illnesses.

Her YouTube channel gained over 250,000 subscribers, and although she had to leave the platform in 2017 due to her illness, she maintained her following and campaigning on Twitter and Instagram.

In addition to activism about cystic fibrosis specifically, she also hoped to reduce the societal stigma’s around disability and attractiveness.

According to the US Cystic Fibrosis Foundation, more than 70,000 people suffer from the condition worldwide. It is a genetic condition, with no known cure.

Opinion

AOC’s Twitch stream is the 2020 version of shaking hands & kissing babies

Published: 21/Oct/2020 16:15 Updated: 21/Oct/2020 16:31

by Chris Stokel-Walker

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A first-time Twitch streamer managing to hit the top five most engaged Twitch streams of all time is news in any instance, but when the streamer is Alexandra Ocasio-Cortez, also known as AOC, it’s even more newsworthy.

At its peak, AOC’s stream of Among Us, which also featured Pokimane and Dr Lupo, had 439,000 viewers. The broadcast was seen 4.6 million times in the eight hours after it ended. These are huge numbers, and indicate AOC’s tech literacy – something few politicians seem to possess. But it’s also an indication of how in this strange, ‘new-normal’ world, political campaigning in 2020 is less about going out and meeting people, and more about presenting yourself online.

The 2020 US presidential election is mere weeks away, and while the incumbent President has been crisscrossing the country, holding mass physical events, the Democrats have chosen a more low-key, digital campaign trail.

Presidential candidate Joe Biden has hosted virtual town halls and live streams, which have given him the ability to connect to digitally-engaged audiences. But those often lack the personal touch.

AOC Alexandria Ocasio-Cortez Instagram
Instagram: Alexandria Ocasio-Cortez
AOC’s broadcast was seen 4.6 million times in the eight hours after it ended

What AOC’s stream does is plug that relatability gap. Political campaigns are won on hearts and minds as much as policies. Part of the reason politicians head out on arduous journeys is to meet as many people as possible and convince them to visit polling stations on election day. They often do that less by drilling down into the nitty-gritty of specific policies they want to enact if elected, but instead by convincing voters that they are relatable human beings who can be trusted with power.

A 2014 academic study identified that first impressions matter when it comes to politicians, and so AOC’s stream – where she played Among Us while chatting to those congregated on her stream – works so well. It’s a method she’s used elsewhere online, too, hosting Instagram Lives while preparing meals and talking about her life, slipping in political policy stances to win over voters.

Her Twitch stream is the 2020 pandemic equivalent of “walking the rope line” – the minutes before and after set-piece speeches, where politicians shake voters’ hands and kiss their babies. It allows people a glimpse into her life, and the ability to consider politicians, many of whom have spent their lives trying to ascend to positions of power, as ordinary human beings. It unbuttons the shirt collar and starched suits of Washington DC and instead reminds people that they’re voting for individuals with lives and interests outside of who’s winning and who’s losing in the political horse race.

Which is why it’s so successful. Both Bernie Sanders and Donald Trump have previously joined Twitch, but most of the content they posted there was simply live streams of in-person campaign events. What AOC is doing is different: it’s accessible, always on, and intensely personal.

“You can’t hide authenticity when streaming on Twitch,” says Steven Buckley, associate lecturer at the University of the West of England, where he studies politics, language, and digital culture.

“It’s not like a traditional TV interview where a politician can prepare answers in advance via focus group testing,” he adds. “You have to be able to react in the moment and AOC is currently one of the most authentic and natural communicators in US politics.”

It’s also an extension of the idea of politicians as influencers, following in the footsteps of Indonesian president Joko Widodo, who has 2.35 million subscribers on YouTube, where he posts behind-the-scenes videos of his political campaign events.

We know that young people are increasingly important in the political calculations made by campaigns and that digital outreach is increasingly vital in an ever-more important election. Up until now, social media’s impact on elections has proven relatively limited, despite pretty much every major election in the 21st century being called the “first true social media campaign”.

But this is a major election being held under the shadow of the coronavirus, and one of the first where one of the campaigns vowed to limit their physical campaigning. That Twitch stream could inject the personality and the humanity that helps sway undecided voters to back one side over the other – and if nothing else, it’s a reminder that politicians, despite what we all say, are human too.