Unknowingly filmed in New York, a woman with neurofibromatosis was wrongly accused, on TikTok, of being a carrier of monkeypox. Same for in Madrid on Twitter for a man. What to question about the spread of false information, and networks as a tool for surveillance and punishment.
As the Covid-19 pandemic drags on, the monkeypox virus has been progressing little by little in France since May 2022. What potentially arouses a wind of concern, even panic, as just illustrated by the spread of two disturbing false information, one in New York and the other in Madrid.
The fake news of monkey pox on the New York subway
The New York hoax began circulating on TikTok, before being distorted and amplified on Twitter. This is a video in which we see a woman, filmed without her knowledge, and one of whose legs shows suspicious traces that could evoke pimples. Gold, common symptoms of monkeypox include painful rashes that turn into pustules, before drying into a crust and eventually fall.
A first TikTok superimposes a monkey head emoji followed by a question mark on the video. Then, many people went from simple hypotheses to inventing diagnoses and incredible stories, even on Twitter. So much so that this person was accused of being a carrier of monkeypox, and still going out with his legs uncovered, when he should remain isolated to avoid contaminating other people through his wounds.
Wrongly Accused of Carrying the Monkeypox Virus, She Actually Had Neurofibromatosis
But the anonymous young woman was finally found by the New York Times. The major daily confirms today that Lilly Simon, the 33-year-old project manager, didn’t have monkeypox, but neurofibromatosis type 1, a genetic condition that causes tumors to grow at her nerve endings. She was diagnosed at the age of eight, has had numerous surgeries, and is now seeing tumors growing in her brain and eyes. Currently, there is no cure for this disease which is not contagious.
Sadly, Lilly Simon says that she has been used to malicious people in the face of her appearance since childhood, that she was nicknamed the leper from school, and that she expected in the face of the rise of concern about monkey pox, being accused of carrying it.
After hesitating for a long time to react, at the risk of having to reveal his identity and information about his health, the victim of this false information that went viral ended up responding on video on August 1, 2022 on TikTok, where it all began:
“The tumors are benign, but they cover all of my skin and cause me a lot of health complications, both physical and mental.
I won’t let any of you take away the years of therapy and care I had to endure to cope with the disease and, of course, to exist among people like you. »
Similar fake news against a man accused of carrying monkeypox on the metro in Madrid
If his response video already has more than 1 million views on TikTok, we can only regret that the one that sowed doubt and misinformation had plenty of time to circulate there more, before being deleted. In journalism, it is even often said that a denial will always make less noise than the initial intox.
The irony is that a similar situation has just occurred in Spain. A man, also suffering from neurofibromatosis, was filmed without his knowledge in the subway from madridand wrongly accused of being a carrier of monkeypox because of the marks on his legs, reports the 20 minutes.
How TikTok and Twitter become tools of surveillance and punishment
These cases can be worrying in several respects. They raise issues of image rights, invasion of privacy, and defamation. These questions intersect with those of discrimination, which can have heavy emotional and psychological consequences, whether you really have monkeypox or not.
Especially since at present, in the West, this disease mainly affects men who have sex with men. It is therefore not surprising that malicious people have quickly made draw conclusions about the sexuality of individuals who have not asked for anything and can find themselves outed, rightly or wrongly (situation in which one or more third parties come out of a person without their knowledge and against their will, as was the case for the Belgian singer Angèle for example). In this regard, the monkeypox virus spreads all the more easily, thanks in part to homophobia, from ordinary people and governments, for that matter.
Blow after blow, these intox prove once again (if necessary) the role of social networks in the spread of false information. But it also raises the question the behavior of some people who do not hesitate to film others, without their knowledge. Whether to post the worst rumors afterwards (or not), slowly but surely becoming new tools of panopticon, surveillance and punishmentwhich would surely fascinate Michel Foucault – and remain disturbing.
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Front page photo credit: Screenshot from TikTok and Twitter.