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"content": "<p>Nothing about us without us, has been our project’s main rule since we started. But what does it really mean?</p><div class=\"wp-block-group has-global-padding is-layout-constrained wp-block-group-is-layout-constrained\"><div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"></div><hr class=\"wp-block-separator has-text-color has-custom-verde-color has-alpha-channel-opacity has-custom-verde-background-color has-background\"/><div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"></div></div><p><!--more read more--></p><h2 class=\"wp-block-heading\">Accessibility, inclusion, guidelines</h2><p>Too many people keep on talking about accessibility and inclusion but how many times do these words come true? </p><p>Plenty of easy or complex rules concern accessibility both in physical and digital world, often we also encounter endless debates about which terms should be used not to offend marginalized people, and especially this topic turns into grotesque. But frequently these discussions involve everyone, except those who rely on accessibility for their personal needs. </p><p>Think of 80s and 90s advertisements against AIDS transmission: they were conveying a fear message rather than awareness, because they were created by good communication experts who did not live AIDS firsthand, so general panic has been the evident result. </p><p>However, if early AIDS activists could contribute to these campaigns, they would have been more effective and avoid to develop a stigmatizing culture.</p><p>Unfortunately it seems that despite being often made with underrepresented groups’ advice, few written laws or guidelines make an essential statement come true: “nothing to say (or to do) about us, without us”.</p><h2 class=\"wp-block-heading\">When groups don’t talk to each other</h2><p>This isn’t the right place to delve into the specifics of physical or digital barriers, but let’s look at a prime example of what happens when different work groups fail to communicate: in the case we talk about, “nothing about us without us” principle doesn’t apply to a single “category” of people but to an entire sector: information technology.</p><p>Without getting bogged down in technical jargon, what does digital accessibility legislation say? </p><p>Any information conveyed through images must have an alternative text format to make it accessible to people with visual impairments.</p><p>European cybersecurity regulations, though often explained in a vague and non-technical way, require that sensitive banking information (like security codes and credit card PINs) be displayed in a format that cannot be copied, pasted, or intercepted by third parties.</p><p>As a result, most websites and smartphone apps display this information as images that are only visible on the screen for a few seconds, completely undermining accessibility regulations.</p><p>So the outcome is a paradox: if you can’t see, to obtain this information, you have to rely on sighted people who are quick readers and whom you trust implicitly (how do you measure that level of trust?)</p><p>The not-so-distant risk is that this sensitive data could end up in the wrong hands, all because two groups of people responsible for drafting laws didn’t communicate with each other. </p><p>You are forced to compromise your privacy because someone assumed they could protect it solely through the use of sight. Epic fail.</p><h2 class=\"wp-block-heading\">Don’t talk about us without us!</h2><p>Despite being essential for a peaceful life, “don’t talk about us without us” can be a very difficult goal to achieve; however we should do our best to make it true in any daily action, including virtual activities such as writing and social networks interactions. </p><p>Although we share ownership of this blog, the concept of “positive world” was Elettrona’s brainchild. As an HIV-negative person she couldn’t fully grasp the experience of living with the virus, so the “nothing about us without us” concept was clearly disregarded.</p><p>Let’s face it, no one knows everything about everything, especially something as complex as HIV. But it’s pretty clear that the best books are written by people who really know what they’re talking about.</p><p>There’s no plan on writing a book anytime soon, but we’re reading a ton to learn as much as we can. It’s easy to tell the difference between someone who just reads a few articles and someone who’s actually lived the experience. </p><p>Like, if you’re writing a book about ancient Rome, you can’t exactly interview Julius Caesar. But if you know someone who lives in Rome today, they can show you around and provide a real feel for the city.</p><p>That’s what we’ve done with HIV. We’ve talked to a lot of people who are HIV positive, and we’ve read tons of stuff online, even from subcultures we don’t agree with at all.</p><p>In our case it’s been a real challenge as our fantasy world is reversed – people with virus ostracize anyone who has an HIV negative test, so every perspective we learnt about, had to be studied and turned upside down.</p><p>This meant a lot of writing exercise in order to save what we liked and discard characters or stories not fitting with our values.</p><p>Then “day of reckoning” came and we finally shared our project with some HIV activists. We needed their endorsement, conscious that whenever they disliked our satire approach, we would have given it up because our own experience with HIV is not the absolute truth, the fact one of us lives with it means just a single point of view. </p><p>Fear of failing brought our self-esteem down , until an Italian association of HIV-positive LGBT people enjoyed our blog. To be precise, we had a long conversation where they complimented us, but also gave us some constructive criticism which became a great contribute to our growth.</p><p>Having the HIV virus speak in human language was a risky experiment. At first, we thought of turning it into a kind of pet for our human characters, but giving it a voice proved to be the most intriguing option. It felt fresh and original compared to other stories we’d read.</p><p>How much can HIV see from the inside? This symbiotic relationship offers endless narrative possibilities, far from the usual clichés. Thanks to this talking virus, we’re constantly challenged to consider different perspectives, reminding us that we’re not alone in this world.</p>",
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"en": "<p>Nothing about us without us, has been our project’s main rule since we started. But what does it really mean?</p><div class=\"wp-block-group has-global-padding is-layout-constrained wp-block-group-is-layout-constrained\"><div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"></div><hr class=\"wp-block-separator has-text-color has-custom-verde-color has-alpha-channel-opacity has-custom-verde-background-color has-background\"/><div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"></div></div><p><!--more read more--></p><h2 class=\"wp-block-heading\">Accessibility, inclusion, guidelines</h2><p>Too many people keep on talking about accessibility and inclusion but how many times do these words come true? </p><p>Plenty of easy or complex rules concern accessibility both in physical and digital world, often we also encounter endless debates about which terms should be used not to offend marginalized people, and especially this topic turns into grotesque. But frequently these discussions involve everyone, except those who rely on accessibility for their personal needs. </p><p>Think of 80s and 90s advertisements against AIDS transmission: they were conveying a fear message rather than awareness, because they were created by good communication experts who did not live AIDS firsthand, so general panic has been the evident result. </p><p>However, if early AIDS activists could contribute to these campaigns, they would have been more effective and avoid to develop a stigmatizing culture.</p><p>Unfortunately it seems that despite being often made with underrepresented groups’ advice, few written laws or guidelines make an essential statement come true: “nothing to say (or to do) about us, without us”.</p><h2 class=\"wp-block-heading\">When groups don’t talk to each other</h2><p>This isn’t the right place to delve into the specifics of physical or digital barriers, but let’s look at a prime example of what happens when different work groups fail to communicate: in the case we talk about, “nothing about us without us” principle doesn’t apply to a single “category” of people but to an entire sector: information technology.</p><p>Without getting bogged down in technical jargon, what does digital accessibility legislation say? </p><p>Any information conveyed through images must have an alternative text format to make it accessible to people with visual impairments.</p><p>European cybersecurity regulations, though often explained in a vague and non-technical way, require that sensitive banking information (like security codes and credit card PINs) be displayed in a format that cannot be copied, pasted, or intercepted by third parties.</p><p>As a result, most websites and smartphone apps display this information as images that are only visible on the screen for a few seconds, completely undermining accessibility regulations.</p><p>So the outcome is a paradox: if you can’t see, to obtain this information, you have to rely on sighted people who are quick readers and whom you trust implicitly (how do you measure that level of trust?)</p><p>The not-so-distant risk is that this sensitive data could end up in the wrong hands, all because two groups of people responsible for drafting laws didn’t communicate with each other. </p><p>You are forced to compromise your privacy because someone assumed they could protect it solely through the use of sight. Epic fail.</p><h2 class=\"wp-block-heading\">Don’t talk about us without us!</h2><p>Despite being essential for a peaceful life, “don’t talk about us without us” can be a very difficult goal to achieve; however we should do our best to make it true in any daily action, including virtual activities such as writing and social networks interactions. </p><p>Although we share ownership of this blog, the concept of “positive world” was Elettrona’s brainchild. As an HIV-negative person she couldn’t fully grasp the experience of living with the virus, so the “nothing about us without us” concept was clearly disregarded.</p><p>Let’s face it, no one knows everything about everything, especially something as complex as HIV. But it’s pretty clear that the best books are written by people who really know what they’re talking about.</p><p>There’s no plan on writing a book anytime soon, but we’re reading a ton to learn as much as we can. It’s easy to tell the difference between someone who just reads a few articles and someone who’s actually lived the experience. </p><p>Like, if you’re writing a book about ancient Rome, you can’t exactly interview Julius Caesar. But if you know someone who lives in Rome today, they can show you around and provide a real feel for the city.</p><p>That’s what we’ve done with HIV. We’ve talked to a lot of people who are HIV positive, and we’ve read tons of stuff online, even from subcultures we don’t agree with at all.</p><p>In our case it’s been a real challenge as our fantasy world is reversed – people with virus ostracize anyone who has an HIV negative test, so every perspective we learnt about, had to be studied and turned upside down.</p><p>This meant a lot of writing exercise in order to save what we liked and discard characters or stories not fitting with our values.</p><p>Then “day of reckoning” came and we finally shared our project with some HIV activists. We needed their endorsement, conscious that whenever they disliked our satire approach, we would have given it up because our own experience with HIV is not the absolute truth, the fact one of us lives with it means just a single point of view. </p><p>Fear of failing brought our self-esteem down , until an Italian association of HIV-positive LGBT people enjoyed our blog. To be precise, we had a long conversation where they complimented us, but also gave us some constructive criticism which became a great contribute to our growth.</p><p>Having the HIV virus speak in human language was a risky experiment. At first, we thought of turning it into a kind of pet for our human characters, but giving it a voice proved to be the most intriguing option. It felt fresh and original compared to other stories we’d read.</p><p>How much can HIV see from the inside? This symbiotic relationship offers endless narrative possibilities, far from the usual clichés. Thanks to this talking virus, we’re constantly challenged to consider different perspectives, reminding us that we’re not alone in this world.</p>"
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"published": "2024-11-21T10:39:39Z",
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