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Sunday, April 3, 2022

Reflections on Shadowpox: The Cytokine Storm at the Desmond Tutu HIV Foundation Youth Centre

Less than a year before the pandemic, on 12 March 2019, peer health interns Zanele Melapi and Sibulele Bontshi reflected on their participation in the "citizen science fiction" workshop Shadowpox: The Cytokine Storm, at the Desmond Tutu HIV Foundation Youth Centre, Masiphumelele, South Africa. 

 


Transcripts

Zanele Melapi 

Hi, I'm Zanele Melapi and I'm 19 years old. I'm a youth intern at the Desmond Tutu HIV Foundation Youth Centre and I'm from South Africa, in Cape Town, a small area in Fish Hoek called Masiphumelele. 

How would I explain [vaccination] to people, in an easy way for them to get it? I feel like I would just use the Shadowpox thing. Like, for real. Because I feel like even though the vaccination, it's not about the thing when we did the way of the shadowpox. But I feel like that one is much easier for people if you do an example and say, look, if this is a piece of what-what, they take that and then put a little bit of that in the vaccination. And then you get vaccinated whereby if you get the disease, you are protected you are protected from the disease. So meaning, vaccinations are actually a good thing. 

And then, for the little ones, I feel like Shadowpox is actually a good example of it, for showing the little ones. It's more interesting. And so, you know, children, like the youth, they don't like to watch and sit into a presentation where it's just boring, just talks and no color, and no words, and no fun things. And then when the shadowpox, that thing moves, you see, it moves and moves and moves. And they'd be like, wow, it's actually moving. 

[What was your favourite part of the workshop?

When we were doing the comics. That was my first time doing something like that. And that was kind of, wow. I didn't know people could actually do that. That was actually nice for me. That I enjoyed the best. And then when we had to act out act out our scenes from the comic, that was nice. I enjoyed that the best. 

[Did you learn anything from the workshop?

Yeah, 'cause I did not know that you put like a – they put some of the disease in there. I didn't know that. I don't want to lie. I didn't know that. So yeah, that's what I learned. 

And I learned about the phases, the different phases. Phase one, where the start of the vaccine – the study. And then phase two is when they bring more people, and then phase three is like, expanded. Phases. I didn't know. I just thought you just bring a lot of people. I didn't know it had like a starting point where it's the phase one, introducing the vaccine, and then yeah. 

[And do you think you'd ever want to be part of a real-life vaccine trial?

Yes, definitely. 

[How would you say immunity is like a superpower?

The disease can't do anything to you. It's like you're Superman. The bullet won't do anything to you. No, a bullet will do something to you. But when it comes to Superman, the bullet can't do anything to him. So when you have the vaccine, you're protected, meaning that disease won't attack you, won't do anything to you. But other things will. Right? 

[Do you think people might learn something from watching Shadowpox?

If they knew nothing about vaccinations, then maybe they're going to learn something from this. Since it's a fun thing to look at, not like a boring thing to watch. Where you're going to watch something, you're going to find it entertaining, but you're going to learn something as well. Hopefully they're going to learn something out of it. 

[Anything else you'd like to add?

How I wish vaccinations were that easy, where you just put– no needles, no nothing. How I wish it was just like that. But the reality is: Needles.

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Sibulele Bontshi

[Do you think information needs to be given in a particular way? Are people interested in hearing it as information, or do you think it’s more useful to tell it in a story like this?

I'd say in a story it would be much better than maybe like social media, because in social media they know, OK, there's usually those pop-out adverts or information that comes up, and they'll instantly think, "OK, nah, they just want money from me, or they're gonna eat my data or my airtime." Something like that. Which is one thing people don't like. Because they hustle for their data. And most of them can't afford it, but they make ways to get it. 

So I'd say maybe something like this, they'll see, maybe me, they'd be like, "OK, I know that guy." Something like that. Then they'd want to hear what I have to say, maybe. Not all of them, but there will be those who are the curious ones who'll try, "OK let me hear what he's got to say. Maybe I might gain something from here. Although it may be small information, but I'll learn something from it." So I think it would be much better like this. 

And it shouldn't be something long and full of information. Information and pictures here and there, examples, stuff like that. Because just words, they'd be like reading a Bible. And that's a turn-off, especially to the youth and teenagers. They're not into much reading. But they'll read if they see OK, at least, do this and that, in the form of a visual or something like that. I think if you go to social media, if you can use that path, you'll be much more successful than just a whole bunch of information, like some sort of a Bible or something. They wouldn't relate to that.

[Did you learn anything from the workshop?

I think the Shadowpox vaccine was just too creative. Because even the shadow thing, I've never heard of a disease that you spread just by catching someone's shadow. That's so– I don't know if I'd say it's freaky or like so unusual, it was just something different for me, like, "What? Catch a disease where you–" Because now I'm imagining if I see maybe you're infected, then I'll have to give you so much space just not to catch your shadow. And that would be so awkward in the road, because there's a lot of people now, and you don't even know who's infected or not. Ah! That would be so hectic. That would be so hectic.

[What would you tell other people about Shadowpox?

So yeah, maybe to encourage more people to join in with problems like this, and participate and get more skills. Maybe the person wouldn't know they're passionate about this until they do it. So I'd advise anyone watching or anyone that's willing to try, like give it a try. You might never know what may come out of it. So yeah. That's what I would say to them. 

I enjoyed it, that's all I can say. I enjoyed it and I would do it again if there was a chance.