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Launch Day!

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The Kickstarter campaign for WEFT launched this morning.

They need to reach their goal by mid-July, so if you want to see a magazine geared towards the more intermediate level weaver, here's your chance.

I'm told PLY is an excellent magazine for spinners; I'm hoping this will be an excellent magazine for weavers.

Handwoven is good - it has great projects with lovely photos, and provides information on how to weave the projects they highlight.  I'm hoping WEFT will bend a little more towards teaching beyond the basics.  

Partly that is a bit selfish on my part, because while I subscribe to Handwoven, it isn't geared towards me.  In fact I wrote for Handwoven on many occasions in the past.  My textiles were even used on the cover of two issues.  :)

But I also miss getting together with other weavers, talking about textiles in depth, expanding my horizons.  I could join a study group, probably should, but right now I don't want to add the 'burden' of deadlines to my life beyond what I already have.  And I really don't want the responsibility of hosting a study group.

Since my body started seriously falling apart a few years ago, it's become impossible for me to teach a class in person.  Fibre Week at Olds College has been cancelled, so I don't go there every year, either.  And I miss the community of weavers.  So, I'm hoping that WEFT will be a good alternative, perhaps help keep me thinking in fresh ways about how to take threads and turn them into cloth.

Even if you aren't interested in WEFT, let weavers you know, know about it.  Let's get this project up and running!

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19 days ago
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Dead Boy Detectives and Sweater Weather

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So this is some exciting news! This is a bit of a long story, but it ends with me screeching from the rooftops that I knit a sweater that has ended up on TV!

As you all know, Kyle Cassidy and I worked on the book Lopapeysa. While we were there Kyle Knit his own Lopi sweater for the first time as we traveled around the ring road. We discussed seeing stones at a church and how the shapes could be incorporated into a lopi yoke. Kyle said he wanted something with swords in it!

After knitting (and gifting) his first sweater, he set about making another one. He used my pattern (recipe) for the adventure sweater, and the yoke graph as a template to make an insanely cool design utilizing his sword idea. Then he gifted it to none other than Neil Gaiman.

Neil Gaiman wearing the sweater knit by Kyle Cassidy

Shortly after Neil posted a picture of himself wearing the sweater, the crew from HBO reached out to me asking if I could make another one for an actor to wear. They offered fair compensation but there was a catch. The sweater had to be in Canada in just a few days. Meaning with shipping and blocking time, I would have to knit it in less than THREE DAYS.

“No problem!” I said. In my mind I was of course thinking, small problem, but heck, most actors are on the smallish side, this should be easy.

“Great! They replied! Here are the actors measurements!

Okay, bigger problem. This actor is apparently fit. And muscular. This sweater needed to be a size Large, not small. But I dove in, didn’t sleep, cried a couple times and got it done!

I sent it off, they said thank you and then… silence. Was it used? Who wore it? Will I see it on screen. I had no way of knowing. I heard the show got sold to Netflix, then came the release date. Then finally, today I saw the show. And guess what? THEY USED THE SWEATER!

I’m so happy and excited! Kyle wrote up a lovely description of how it came to be, and we have released the sweater pattern for absolutely zero dollars, though we would love it if you could tag us when posting your finished creation.

If you’d like to learn more about knitting Lopapeysa sweaters, check out our book Lopapesysa!

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42 days ago
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Podcast Episode: Building a Tactile Internet

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Blind and low-vision people have experienced remarkable gains in information literacy because of digital technologies, like being able to access an online library offering more than 1.2 million books that can be translated into text-to-speech or digital Braille. But it can be a lot harder to come by an accessible map of a neighborhood they want to visit, or any simple diagram, due to limited availability of tactile graphics equipment, design inaccessibility, and publishing practices.

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(You can also find this episode on the Internet Archive and on YouTube.)

Chancey Fleet wants a technological future that’s more organically attuned to people’s needs, which requires including people with disabilities in every step of the development and deployment process. She speaks with EFF’s Cindy Cohn and Jason Kelley about building an internet that’s just and useful for all, and why this must include giving blind and low-vision people the discretion to decide when and how to engage artificial intelligence tools to solve accessibility problems and surmount barriers. 

In this episode you’ll learn about: 

  • The importance of creating an internet that’s not text-only, but that incorporates tactile images and other technology to give everyone a richer, more fulfilling experience. 
  • Why AI-powered visual description apps still need human auditing. 
  • How inclusiveness in tech development is always a work in progress. 
  • Why we must prepare people with the self-confidence, literacy, and low-tech skills they need to get everything they can out of even the most optimally designed technology. 
  • Making it easier for everyone to travel the two-way street between enjoyment and productivity online. 

Chancey Fleet’s writing, organizing and advocacy explores how cloud-connected accessibility tools benefit and harm, empower and expose communities of disability. She is the Assistive Technology Coordinator at the New York Public Library’s Andrew Heiskell Braille and Talking Book Library, where she founded and maintains the Dimensions Project, a free open lab for the exploration and creation of accessible images, models and data representations through tactile graphics, 3D models and nonvisual approaches to coding, CAD and “visual” arts. She is a former fellow and current affiliate-in-residence at Data & Society; she is president of the National Federation of the Blind’s Assistive Technology Trainers Division; and she was recognized as a 2017 Library Journal Mover and Shaker. 


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The fact is, as I see it, that if you are presented with what seems on a quick read, like good enough alt text, you're unlikely to do much labor to make it better, more nuanced, or more complete. What I've already noticed is blind people in droves dumping their descriptions of personal images, sentimental images, generated by AI onto social media, and there is a certain hyper-normative quality to the language. Any scene that contains a child or a dog is heartwarming. Any sunset or sunrise is vibrant. Anything with a couch and a lamp is calm or cozy. Idiosyncrasies are left by the wayside.

Unflattering little aspects of an image are often unremarked upon, and I feel like I'm being served some Ikea pressboard of reality, and it is so much better than anything that we've had before on demand without having to involve a sighted human being. And it's good enough to mail, kind of like a Hallmark card, but do I want the totality of digital description online to slide into this hyper normative, serene anodyne description? I do not. I think that we need to do something about it.

That's Chancey Fleet describing one of the problems that has arisen as AI is increasingly used in assistive technologies. 

I’m Cindy Cohn, the executive director of the Electronic Frontier Foundation.

And I’m Jason Kelley, EFF’s Activism Director. This is our podcast, How to Fix the Internet.

On this show, we’re trying to fix the internet – or at least trying to envision what the world could look like if we start to get things right online. At EFF we spend a lot of time pointing out the way things could go wrong – and jumping in to the fight when they DO go wrong. But this show is about optimism, hope and bright ideas for the future.

According to a National Health Interview Survey from 2018, more than 32 million Americans reported that they had vision loss, including blindness. And as our population continues to age, this number only increases. And a big part of fixing the internet means fixing it so that it works properly for everyone who needs and wants to use it – blind, sighted, and everyone in between.

Our guest today is Chancey Fleet. She is the Assistive Technology Coordinator for the New York Public Library, where she teaches people how to use assistive technology to make their lives easier and more accessible. She’s also the president of the Assistive Technology Trainer’s Division for the National Federation of the Blind. 

We started our conversation as we often do – by asking Chancey what the world could be like if we started getting it right for blind and low vision people. 

The unifying feature of rightness for blind and low vision folks is that we encounter a digital commons that plays to our strengths, and that means that it's easy for us to find information that we can access and understand. That might mean that web content always has semantic structure that includes things like headings for navigation. 

But it also includes things that we don't have much of right now, like a non-visual way to access maps and diagrams and images, because of course, the internet hasn't been in text only mode for the rest of us for a really long time.

I think getting the internet right also means that we're able to find each other and build community because we're a really low incidence disability. So odds are your colleague, your neighbor, your family members aren't blind or low-vision, and so we really have to learn and produce knowledge and circulate knowledge with each other. And when the internet gets it right, that's something that's easy for us to do. 

I think that's so right. And it's honestly consistent with, I think, what every community wants, right? I mean, the Internet's highest and best use is to connect us to the people we wanna be connected to. And the way that it works best is if the people who are the users of it, the people who are relying on it have, not just a voice, but a role in how this works.

I've heard you talk about that in the context of what you call ‘ghostwritten code.’ Do you wanna explain what that is? Am I right? I think that's one of the things that has concerned you.

Yeah, you are right. A lot of people who work in design and development are used to thinking of blind and disabled people in terms of user stories and personas, and they may know on paper what the web content accessibility guidelines, for instance, say that a blind or low vision user or a keyboard-only user, or a switch user needs. The problems crop up when they interpret the concrete aspects of those guidelines without having a lived experience that leads them to understand usability in the real world.

I can give you one example. A few years ago, Google rolled out a transcribe feature within Google Translate, which I was personally super excited about. And by the way, I'm a refreshable Braille user, which means I use a Braille display with my iPhone. And if you were running VoiceOver, the screen reader for iPhone, when you launched the transcribed feature, it actually scolded you that it would not proceed, that it would not transcribe, until you plugged in headphones because well-meaning developers and designers thought, well, VoiceOver users have phones that talk, and if those phones are talking, it's going to ruin the transcription, so we'll just prevent that from happening. They didn't know about me. They didn't know about refreshable Braille users or users that might have another way to use VoiceOver that didn't involve speech out loud.

And so that, I guess you could call it a bug, I would call it a service denial, was around for a few weeks until our community communicated back about it, and if there had been blind people in the room or Braille users in the room, that would've never happened.

I think this will be really interesting and useful for the designers at EFF who think a lot in user personas and also about accessibility. And I think just hearing what happens when you get it wrong and how simple the mistake can be is really useful I think for folks to think about inclusion and also just how essential it is to make sure there's more in-depth testing and personas as you're saying. 

I wanna talk a little bit about the variety of things you brought up in your opening salvo, which I think we're gonna cover a lot of. But one of the points you mentioned was, or maybe you didn't say it this way in the opening, but you've written about it, and talked about it, which is tactile graphics and something that's called the problem of image poverty online.

And that basically, as you mentioned, the internet is a primarily text-based experience for blind and low-vision users. But there are these tools that, in a better future, will be more accessible, both available and usable and effective. And I wonder if you could talk about some of those tools like tablets and 3D printers and things like that.

So it's wild to me the way that our access to information as blind folks has evolved given the tools that we've had. So, since the eighties or nineties we've had Braille embossers that are also capable of creating tactile graphics, which is a fancy way to say raise drawings.

A graphics-capable embosser can emboss up to a hundred dots per inch. So if you look at it. Visually, it's a bit pixelated, but it approaches the limits of tactile perception. And in this way, we can experience media that includes maybe braille in the form of labels, but also different line types, dotted lines, dashed lines, textured infills.

Tactile design is a little bit different from visual design because our perceptual acuity is lower. It's good to scale things up. And it's good to declutter items. We may separate layers of information out to separate graphics. If Braille were print, it would be a thirty-six point font, so we use abbreviations liberally when we need to squeeze some braille onto an image.

And of course, we can't use color to communicate anything semantic. So when the idea of a red line or a blue line goes away we start thinking about a solid line versus a dashed or dotted line. When we think about a pie chart, we think about maybe textures or labels in place of colors. But what's interesting to me is that although tactile graphics equipment has been on the market since at least the eighties, probably someone will come along and correct me that it's even sooner than that.

Most of that equipment is on the wrong side of an institutional locked door, so it belongs to a disability services office in a university. It belongs to the makers of standardized tests. It belongs to publishers. I've often heard my library patrons say something along the lines of, oh yeah, there was a graphics embosser in my school, but I never got to touch it, I never got to use it. 

Sometimes the software that's used to produce tactile graphics is, in itself, inaccessible. And so I think blind people have experienced pretty remarkable gains in general in regard to our information literacy because of digital technologies and the internet. For example, I can go to Bookshare.org, which is an online library for people with print disabilities and have my choice of a million books right now.

And those can automatically be translated to text-to-speech or to digital braille. But if I want a map of the neighborhood that I'm going to visit tomorrow, or if I want a glimpse of how electoral races play out, that can be really hard to come by. And I think it is a combination of the limited availability of tactile graphics equipment, inaccessibility of design and publishing practices for tactile graphics, and then this sort of vicious circular lack of demand that happens when people don't have access. 

When I ask most blind people, they'll say that they've maybe encountered two or three tactile graphics in the past year, maybe less. Um, a lot of us got more than that during our K-12 instruction. But what I find, at least for myself, is that when tactile graphics are so strongly associated with standardized testing and homework and never associated with my own curiosity or fun or playfulness or exploration, for a long time, that actually dampened down my desire to experience tactile graphics.

And so most of us would say probably, if I can be so bold as to think that I speak for the community for a second, most of us would say that yes, we have the right to an accessible web. Yes, we have the right to digital text. I think far fewer of us are comfortable saying, or understand the power of saying we also have a right to images and so in the best possible version of the internet that I imagine we have three things. We have tactile graphics equipment that is bought more frequently, and so there are economies of scale and the prices come down. We have tactile design and graphics design programs that are more accessible than what's on the market right now. And critically, we have enough access to tactile graphics online that people can find the kind of information that engages and compels them. And within 10 years or so, people are saying, we don't live in a text-only world, images aren't inherently visual, they are spacial, and we have a right to them.

I read a piece that you had written about the kind of importance of data visualizations during the pandemic and how important it was for that sort of flatten the curve graph to be able to be seen or, or touched in this case, um, by as many people as possible. But, and, and that really struck me, but I also love this idea that we shouldn't have to get these tools only because they're necessary, but also because people deserve to be able to enjoy the experience of the internet.

Right, and you never know when enjoyment is going to lead to something productive or when something productive you're doing spins out into enjoyment. Somebody sent me a book of tactile origami diagrams. It's a four volume book with maybe 40 models in it, and I've been working through them all. I can do almost all of them now, and it's really hard as a blind person to go online and find origami instructions that make any sense from an accessibility perspective.

There is a wonderful website called AccessOrigami.com. Lindy Vandermeer out of South Africa does great descriptive origami instruction. So it's all text directing you step by step by step. But the thing is, I'm a spatial thinker. I'm what you might think of as a visual thinker, and so I can get more out of a diagram that's showing me where to flip dot A to dot B, then I can in reading three paragraphs. It's faster, it's more fluid, it's more fun. And so I treasure this book and unfortunately every other blind person I show it to also treasures it and can't have it 'cause I've got one copy. And I just imagine a world in which, when there's a diagram on screen, we can use some kind of process to re-render it in a more optimal format for tactile exploration. That might mean AI or machine learning, and we can talk a little bit about that later. But a lot of what we learn about. What we're good at, what we enjoy, want, what we want more of in life. You know, we do find online these days, and I want to be able to dive into those moments of curiosity and interest without having to first engineer a seven step plan to get access to whatever it is that's on my screen.

Let’s pause for just a moment to say thank you to our sponsor. “How to Fix the Internet” is supported by The Alfred P. Sloan Foundation’s Program in Public Understanding of Science and Technology. Enriching people’s lives through a keener appreciation of our increasingly technological world and portraying the complex humanity of scientists, engineers, and mathematicians.

And now back to our conversation with Chancey Fleet.

So let's talk a little bit about AI and I'd love to hear your perspective on where AI is gonna be helpful and where we ought to be cautious.

So if you are blind and reasonably online and you have a smartphone and you're somebody that's comfortable enough with your smartphone that like you download apps on a discretionary basis, there's a good chance that you've heard of a new feature in this app, be my eyes called be my AI, and it's a ChatGPT with computer vision powered describer.

You aim your camera at something, wait a few seconds, and a fairly rich description comes back. It's more detailed and nuanced than anything that AI or machine learning has delivered before, and so it strikes a lot of us as transformational and or uncanny, and it allows us to grab glimpses of what I would call a hypothesized visual world because as we all know, these AI make up stories out of whole cloth and include details that aren't there, and skip details that to the average human observer would be obviously relevant. So I can know that the description I'm getting is probably not prioritized and detailed in quite the same way that a human describer would approach it.

So what's interesting to me is that, since interconnected blind folks have such a dense social graph, we are all sort of diving into this together and advising each other on what's going well and what's not. And I think that a lot of us are deriving authentic value from this experience as bounded by caveats as it is. At the same time, I fear that when this technology scales, which it will, if other forces don't counteract it, it may become a convincing enough business case that organizations and institutions can skip. Human authoring of alt text to describe images online and substitute these rich seeming descriptions that are generated by an AI, and even if that's done in such a way that a human auditor can go in and make changes.

The fact is, as I see it, that if you are presented with. What seems on a quick read, like good enough alt text, you're unlikely to do much labor to make it better, more nuanced, or more complete. 

I think what I hear in the answer is it can be an augment to the humans doing the describing, um, but not a replacement for, and that's where the, you know, but it's cheaper part comes in. Right. And I think keeping our North Star on the, you know, using these systems in ways that assist people rather than replace people is coming up over and over again in the conversations around AI, and I'm hearing it in what you're saying as well.

Absolutely, and let me say as a positive it is both my due diligence as an educator and my personal joy to experiment with moments where AI technologies can make it easier for me to find information or learn things. For example, if I wanna get a quick visual description of the Bluebird trains that the MTA used to run, that's a question that I might ask AI.

I never would've bothered a human being with it. It was not central enough. But if I'm reading something and I want a quick visual description to fill it in, I'll do that.

I also really love using AI tools to look up questions about different artistic or architectural styles, or even questions about code.

I'm studying Python right now because when I go to look for information online on these subjects, often I'm finding websites that are riddled with. Lack of semantic structure that have graphics that are totally unlabeled, that have carousels, that are hard for screen reader users to navigate. And so one really powerful and compelling thing that current Conversational AI offers is that it lives in a text box and it won't violate the conventions of a chat by throwing a bunch of unwanted visual or structural clutter my way.

And when I just want an answer and I'm willing to grant myself that I'm going to have to live with the consequences of trusting that answer, or do some lateral reference, do some double checking, it can be worth my while. And in the best possible world moving forward, I'd like us to be able to harness that efficiency and that facility that conversational AI has for avoiding the hyper visual in a way that empowers us, but doesn't foreclose opportunities to find things out in other ways.

As you're describing it, I'm envisioning, you know, my drunk friend, right? They might do okay telling me stuff, but I wouldn't rely on them for stuff that really matters.


You've also talked a little bit about the role of data privacy and consent and the special concerns that blind people have around some of the technologies that are offered to them. But making sure that consent is real. I'd love for you to talk a little bit about that.

When AI is deployed on the server side to fix accessibility problems in lieu of baking, accessibility in from the ground up in a website or an application, that does a couple of things. It avoids changing the culture at the company, the customer company itself, around accessibility. It also involves an ongoing cost and technology debt to the overlay company that an organization is using and it builds in the need for ongoing supervision of the AI. So in a lot of ways, I think that that's not optimal. What I think is optimal is for developers and designers, perhaps, to use AI tools to flag issues in need of human remediation, and to use AI tools for education to speed up their immersion into accessibility and usability concepts.

You know, AI can be used to make short work of things that used to take a little bit more time. When it comes to deploying AI tools to solve accessibility problems, I think that that is a suite of tools that is best left to the discretion of the user. So we can decide, on the user side, for example, when to turn on a browser extension that tries to make those remediations. Because when they're made for us at scale, that doesn't happen with our consent and it can have a lot of collateral impacts that organizations might not expect.

The points you're making about being involved in different parts of the process. Right. It's clear that people that use these tools or that, that actually these tools are designed for should be able to decide when to deploy them.

And it's also clear that they should be more involved, as you've mentioned a few times, in the creation. And I wanted to talk a little bit about that idea of inclusion because it's sort of how we get to a place where consent is  actually, truly given. 

And it's also how we get to a place where these tools that are created do what they're supposed to do, and the companies that you're describing, um, build the, the web, the way that it should be built so that people can can access it.

We have to have inclusion in every step of the process to get to that place where these, all of these tools and the web and, and everything we're talking about actually works for everyone. Is inclusion sort of across the spectrum a solution that you see as well?

I would say that inclusion is never a solution because inclusion is a practice and a process. It's something that's never done. It's never achieved, and it's never comprehensive and perfect. 

What I see as my role as an educator, when it comes to inclusion, is meeting people where they are trying to raise awareness – among library patrons and everyone else – I serve about what technologies are available and the costs and benefits of each, and helping people road map a path from their goals and their intentions to achieving the things that they want to do.

And so I think of inclusion as sort of a guiding frame and a constant set of questions that I ask myself about what I'm noticing, what I may not be noticing, what I might be missing, who's coming in, for example, for tech lessons, versus who we're not reaching. And how the goals of the people I serve might differ from my goals for them.

And it's all kind of a spider web of things that add up to inclusion as far as I'm concerned.

I like that framing of inclusion as kind of a process rather than an end state. And I think that framing is good because I think it really moves away from the checkbox kind of approach to things like, you know, did we get the disabled person in the room? Check! 

Everybody has different goals and different things that work for them and there isn't just one box that can be checked for a lot of these kinds of things.

Blind library patrons and blind people in general are as diverse as any library patrons or people in general. And that impacts our literacy levels. It impacts our thoughts and the thoughts of our loved ones about disability. It impacts our educational attainment, and especially for those of us who lose our vision later in life, it impacts how we interact with systems and services.

I would venture to say that at this time in the U.S, if you lose your vision as an adult, or if you grow up blind in a school system, the quality of literacy and travel and independent living instruction you receive is heavily dependent on the quality of the systems and infrastructure around you, who you know, and who you know who is primed to be a disability advocate or a mentor.

And I see such different outcomes when it comes to technology based on those things. And so we can't talk about a best possible world in the technology sphere without also imagining a world that prepares people with the self-confidence, the literacy skills, and the supports for developing low tech skills that are necessary to get everything that one can get out of even the most optimally designed technology. 

A step by step app for walking directions can be as perfect as it gets. But if the person that you are equipping with that app is afraid to step out of their front door and start moving their cane back and forth and listening to the traffic and trusting their reflexes and their instincts because they have been taught how to trust those things, the app won't be used and there'll be people who are unreached and so technology can only succeed to the extent that the people using it are set up to succeed. And I think that that is where a lot of our toughest work resides.

We're trying to fix the internet here, but the internet rests on the rest of the world. And if the rest of the world isn't setting people up for success, technology can't swoop in and solve a lot of these problems.

It needs to rest upon a solid foundation. I think that's just a wonderful place to close because all of us sit on top of what John Perry Barlow called meatspace, right, and if meatspace isn't serving us, then the digital world can only, you know, it can't solve for the problems that are not digital.

I would have loved to talk to Chancey for another hour. That was fantastic.

Yeah, that was a really fun conversation. And I have to say, I just love the idea of the internet going tactile, right? That right now it's all very visual, and that we have the technology to make it tactile so that maps and other things that are, you know, pretty hard for people with low vision or blindness to navigate now, but we have technology, some of the, tools that she talked about that really could make the internet something you could feel as well as see? 

Yeah, I didn't know before talking to her that these tools even existed. And when you hear about it, you're like, oh, of course they do. But it was clear, uh, It was clear from what she said that a lot of people don't have access to them. The tools are relatively new and they need to be spread out more.  But when that happens, hopefully that does happen,  it sort of then requires us to rethink how the internet is built in some ways in terms of the hierarchy of text and what kinds of graphics exist and protocols for converting that information into tactile experiences for people. 

Yeah, I think so. And  it does sit upon something that she mentioned. I mean, she said these machines exist and have existed for a long time, but they're mainly in libraries or other places where people can't use them in their everyday lives. And, and I think, you know, one of the things that we ended with in the conversation was really important, which is, you know, we're all sitting upon a society that doesn't make a lot of these tools as widely available as they need to. 

And, you know, the good news in that is that the hard problem has been solved, which is how do you build a machine like this? The problem that we ought to be able to address as a society is how do we make it available much more broadly? I use this quote a lot, but you know, the future is here. It's just not evenly distributed. Seemed really, really clear in the way that she talked about these tools that like most blind people have used once or twice in school, but then don't get to use and turn part of their everyday life 

Yeah. The, the way I heard this was that we have this problem solved sort of at an institutional level where you can access these tools at an institution, but not at the individual level. And it's really.  It is helpful to hear and and optimistic to hear that they will exist in theory in people's homes if we can just get that to happen. And I think what was really rare for this conversation is that it, like you said, we actually do have the technology to do these things a lot of times we're talking about what we need to improve or change about the technology and and how that technology doesn't quite exist or will always be problematic and in this case, sure, the technology can always get better, but  it sounds like we're actually  At a point where we have a lot of the problems solved, whether it's using tactile tablets or, um,  creating ways for people to  use technology to guide each other through places, whether that's through like a person, through Be My Eyes or even in some cases an AI with the Be My AI version of that.

But we just haven't gotten to the point where those things work for everyone. And everyone has  a level of technological proficiency that lets them use those things. And that's something that clearly we'll need to work on in the future.

Yeah, but she also pointed out the work that needs to be done about making sure that we're continuing to build the tech that actually serves this community. And she, you know, and they're talking about, you know, ghostwritten code and things like that, where, you know, people who don't have the experience are writing things and building things based upon what they think the people who are blind might want. So, you know, on the one hand, there's good news because a lot of really good technology already exists, but I think she also didn't let us off the hook as a society about something that we, we see all across the board, which is, you know, it need, we need to have the direct input of the people who are going to be using the tools in the building of the tools, lest we end up on a whole other path with things that other than what people actually need. And, you know, this is one of the kind of old, you know, what did they say? The lessons will be repeated until they are learned. This is one of those things where over and over again, we find that the need for people who are building technologies to not just talk to the people who are going to be using them, but really embed those people in the development is one of the ways we stay true to our, to our goal, which is to build stuff that will actually be useful to people.

Thanks for joining us for this episode of How to Fix the Internet.

If you have feedback, we'd love to hear from you. Visit EFF.org/podcast and click on listener feedback. While you're there, you can become a member, donate, maybe pick up some limited edition merch like tshirts or buttons or stickers and just see what's happening in digital rights this week and every week.

This podcast is licensed Creative Commons Attribution 4. 0 International and includes music licensed Creative Commons Attribution 3.0 unported by their creators. In this episode, you heard Probably Shouldn't by J.Lang, commonGround by airtone and Klaus by Skill_Borrower

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47 days ago
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What Black Women Need to Know About Cervical Cancer

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The name Jessica Pettway may not sound familiar to you unless you are one of her 200,000+ YouTube subscribers or 160,000 followers on Instagram. Beyond her popularity on social media, Pettway is a significant person within the Black community. Why? At 36, Pettway passed away on March 11, 2024, after being diagnosed with stage 3 cervical cancer. Her death is important to Black women everyone because Pettway’s death could have been prevented or, at the very least, delayed.

Like the story of many other Black women, Pettway’s life was jeopardized because of inadequate health care services. To help keep more Black women safe, here is more on Pettway’s life and death and what Black women can do to protect themselves from the same fate. 

How a Misdiagnosis Led to an Unfortunate Death

Pettway was known as a beauty and lifestyle influencer and often shared moments of her life with viewers. Her presence online portrayed a confident Black woman raising a family, but in June 2022, her life started to change after visiting the doctor because of excess bleeding and extreme fatigue. She was diagnosed with fibroids, non-cancerous growth of tissue and muscle that develops in the uterus. In most cases, fibroids are not severe. 

The doctors dismissed Pettway with no other concerns. Yet, she returned to the hospital a month later after her husband found her unconscious and not breathing. While her symptoms were more severe than before, she received a second diagnosis of fibroids. It wasn’t until February 2023 that she was diagnosed with stage 3 cervical cancer after an oncologist performed an outpatient biopsy.

Although the news was devastating, Pettway kept her faith and shared her journey with her followers. She told her audience that her faith in God would help her recover. Unfortunately, it seems that God had other plans for her. 

While her story is tragic, Pettway was committed to sharing her fight against cancer in hopes that she would inspire others to take care of themselves and get the help they need. In honor of her, here are some things that Black women should know about cervical cancers and how to protect themselves. 

How Cervical Cancer Affects Black Women Differently

Cervical cancer is when abnormal cells develop in the lining of the cervix, and anyone with a cervix is at risk of this type of cancer. However, Black women have a higher risk, especially women over 30.

If you’re wondering how cervical cancer starts, it most commonly comes from the human papillomavirus or HPV. This virus is prevalent amongst those who are sexually active and usually has no symptoms. HPV can go away on its own, but it can also turn into genital or skin warts or cervical cancer. Additionally, HIV and tobacco smoking can increase the chances of attracting HPV.

If HPV develops into cervical cancer, the early stages may not show any signs or symptoms. The later stages, on the other hand, may cause excessive bleeding and abnormal vaginal odor or discharge. These symptoms can easily be associated with other illnesses.

Cervical cancer has four stages. Stages 0–1 involve the development of cancer cells. Stages 2–3 consist of cancer spreading to other areas, including the vagina, the pelvic wall, and kidneys. The fourth and final stage includes the spreading into the bladder, rectum, and other body parts. 

One of the most harmful factors of cervical cancer is its racial disparity. While the disease itself isn’t caused by genetics, Black women have the highest rates of morbidity and mortality due to limited access to quality health care. Other factors that affect Black women getting proper treatment include:

  • Trust in healthcare providers
  • Knowledge of HPV and cervical cancer
  • Workplace flexibility and time off
  • Transportation to medical facilities
  • Family obligations and responsibilities

Additionally, a study in 2017 showed that Black women take twice as long to clear the HPV infection from their cervix compared to white women. A slow reaction to fighting off the virus increases the chances of the virus turning into cancer.

How Black Women Can Protect Themselves

Because Black women are more vulnerable to this disease, taking the proper steps can literally save lives. The first way Black women can protect themselves is through a Pap test, also known as a Pap smear. During this process, cell samples are taken for the lining of the cervix and later tasted.

Another way Black women can protect themselves is through the HPV vaccine. This treatment can protect women from cancers caused by HPV, such as cancer of the vagina, vulva, anus, mouth, throat, and neck. 

Along with the HPV vaccine, early detection is crucial. Patients have a higher survival rate when issues are caught and treated early.

Lastly, Black women must insist on getting fair medical treatment. While speaking up may be difficult and require a second, third, or fourth opinion, it’s necessary for prevention. Pettway’s life was cut too short, but her fight for survival teaches everyone to prioritize their health. Not only will she live on through her online content, but she will live on through every Black woman whom she’s inspired to advocate for their health.

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81 days ago
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How The Owl House did amputee representation right before Eda ever lost her arm - Disability in Media

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A screenshot of Eda from The Owl House, an old woman with pale skin, very large, grey hair and pointed ears in a red dress. Beside the screenshot on a dark pink background is text that reads "Disability in media, How the Owl House got amputee representation right before eda ever lost her arm."
[ID: A screenshot of Eda from The Owl House, an old woman with pale skin, very large, grey hair and pointed ears in a red dress. Beside the screenshot on a dark pink background is text that reads "Disability in media, How the Owl House got amputee representation right before eda ever lost her arm." /End ID]
Dana Terrace's The Owl House has some of the best disability rep I’ve seen on a Disney channel show in a long time, with Eda, the main character’s mentor, being one of many stand-out examples.

Plenty of people have discussed how Eda’s curse and the loss of her magic can work as an allegory for disability and how refreshing it is to see a story (especially one aimed at a younger audience) who’s focus is not on her “overcoming” it, but learning to accept it as a part of her and go from there. Eda’s story tackles a lot of subjects that are often mishandled in other examples of disability representation, from the subject of parents who refuse to accept, to glass siblings and much, much more, The Owl House handles all these topics beautifully.

But one thing that dawned on me during my most recent re-watch of The Owl House is how well Eda (and later Lilith) worked as amputee representation, long before Eda actually lost her arm.

One of the side effects of Eda and Lilith’s curse is that sometimes their body parts, mainly their limbs, can fall off. It doesn’t hurt them, and Eda is seen removing them intentionally at multiple times in the series, but they can always be reattached.

an image of Eda holding her sister Lilith's hand. Lilith is a pale woman with long, black hair, wearing grey clothes. She is looking at her other arm suprised, as her hand is missing. Luz, a Latina girl with short brown hair and a purple hoodie is looking on, smiling.
[ID: an image of Eda holding her sister Lilith's hand. Lilith is a pale woman with long, black hair, wearing grey clothes. She is looking at her other arm suprised, as her hand is missing. Luz, a Latina girl with short brown hair and a purple hoodie is looking on, smiling. /End ID]

While most likely unintentional, the way the show depicts this with Eda in particular is exactly what I wish more people would do with their prosthetic-using amputee characters.

Eda detaches her limbs, especially her legs, when they’re inconvenient or when she’s relaxing.

an image of Eda laying on the couch in a bathrobe, her hair in a towel. She has taken her legs off, throwing them to the other side of the seat
[ID: an image of Eda laying on the couch in a bathrobe, her hair in a towel. She has taken her legs off, throwing them to the other side of the seat. /End ID]

The fact that this is mostly played for laughs is actually a good thing in my opinion (though obviously, the show’s overall tone is part of that), as it shows the audience who are mostly children and teens, that in a world of weird and downright scary (from the perspective of the characters) things, this isn't one of them. It’s just a thing she and Lilith can do, and it can even be funny.

An image of Luz and Eda dressed as pirates. Eda is sitting on the ground, her legs detached and off screen somewhere.
[ID: An image of Luz and Eda dressed as pirates. Eda is sitting on the ground, her legs detached and off screen somewhere. /End ID]
It does startle Luz and Lilith on a few occasions, but that’s more because they didn’t know the curse could do that, but once they’re introduced to it, it’s never really brought up as a big deal again.

I’d love to see more amputee characters who do this with their prosthetics. So often media is almost afraid to have amputees take their prosthetics off on camera or on the page. For some folks, our prosthetics are like a part of our bodies, but that doesn’t mean we never take them off. Show your leg amputee flop on the couch and throw their legs across the room. Have them go without on occasion, not because they have to, but because they just don’t feel like putting them on.

Likewise, the owl house creators never shy away from showing Eda when her limbs aren’t all attached. A lot of media, and kid’s shows in particular, will avoid having an amputee character’s stump visible if they ever do take their prosthetics off - treating that part of the character’s body the same way they treat gore or nudity. I’ve talked before how this actually does have a real impact on how kids in particular react to amputees - I’ve legitimately had kids I worked with cry when I took my prosthetics off, then immediately calm down when they see there’s nothing "scary" under my socks.
As much as I love How To Train Your Dragon, it’s very guilty of this. Hiccup looses his leg at the end of the first movie, and wakes up with his prosthetic already attached. The Netflix series has a few instances where he has his prosthetic off, but the camera almost always avoids showing it until he can cover it up again, or is super zoomed-out so you wouldn’t be able to “see anything”. To their credit, they do get better with this in the last movie (though it's still always covered), but for the majority of the series, they are very reluctant to have any shots where hiccup’s leg is in view without the prosthetic (unless they’re very far away).
a screenshot of Hiccup from How To Train Your Dragon 3, a white man with short brown hair, and one leg missing, wearing armour made of black dragon scales and no prosthetic. He is holding onto toothless's head, a black dragon.
[ID: a screenshot of Hiccup from How To Train Your Dragon 3, a white man with short brown hair, and one leg missing, wearing armour made of black dragon scales and no prosthetic. He is holding onto toothless's head, a black dragon./End ID]
Ironically, Eda does (permanently) loose an arm at the end of season 2, but I don’t really have much to say about her as amputee representation on that front, since she’s absent for a lot of Season 3, and when we do see her again, everything is so hectic, the story doesn’t really have any time to focus on her missing limb (which is reasonable). I will say, I do appreciate that they kept the amputation when she's in her owl-beast form in the finale, but there's honestly not much more to say about it. We do see her again in the epilogue after she’s had some time to settle into the amputation, wearing a hook prosthetic, but it’s, once again, too quick to really say anything from a representation standpoint. There's a few little nit-picky things I could bring up, like the fact they seemed to change the type on amputation she had (when she looses it, we see the split was very close to the elbow, but in the epilogue she has most of her forearm again) but those read to me more like animation mistakes or an odd prosthetic/clothing designs rather than a representation issue - and as someone who's worked in animation, given the stress the team was under for the finale, I'm not really worried about it. Like I said, it's more nit-picky than anything.

A screenshot of Eda, her hair tied back and wearing a red robe and a hook for her right hand.
[ID: A screenshot of Eda, her hair tied back and wearing a red robe and a hook for her right hand. /End ID]
Despite all that though, I still think Eda is still good amputee representation, but mostly because of how they depict her curse’s side effects rather than her actual amputation. She’s honestly one of the only characters that I think you could refer to as “amputee coded” (outside of maybe Teen Titan’s Cyborg), and I genuinely wish more creators would treat their actual amputee characters the same way the Owl House treats Eda in that regard.

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95 days ago
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Oh my god it's @neolithicsheep.bsky.social as a bot [contains quote post or oth...

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Oh my god it's @neolithicsheep.bsky.social as a bot [contains quote post or other embedded content]
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106 days ago
This short story is so good
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