 All right, one seconds of white paper. Thank you so much for being here. Today we're going to be talking about healthcare innovation with people of all abilities. And this presentation is all about possibility. So with that in mind, we hope that this sparks some ideas around initiatives that the different communities that include disability, medical device manufacturers, regulators, cyber research, citizen science, and biohackers can collaborate on. And with that, we hope you take away an understanding of disability, universal design, and accessibility. And we're going to be demystifying disability and debunking some myths in order to help you recognize opportunities to extend innovative solutions to people of all abilities. And with that, I'd like to introduce my co-presenter, Joel. Hi there. My name is Joel Isaac. I'm an accessibility specialist. I guide businesses in integrating accessibility into their digital experiences. I've been losing my eyesight for many years, and that's actually led me into the space from being a full stack developer. In the past, I was a full stack developer before that was even a thing. I built medical weight loss programs from the data all the way up to the interface. I also worked on some security apps for NASA, but I worked for about 20 years as a full stack developer. And what's interesting is my educational background also kind of goes into healthcare. My thesis was on how to apply a disease state management to an online environment to lower healthcare costs. And it really got me into thinking about how different people use software and hardware and just have different experiences based on their abilities and capabilities. And it really got me fascinated into accessibility. And it brought me here today where my real goal, my life goal, has become like, how do we make digital experiences more inclusive? How do we include all kinds of people in a digital experience so they can all benefit from the innovations and adaptations we're trying to provide to the public? Thank you for that, Joel. And my name is Pia Zaragoza. I'm a UX mentor at Springboard, but I'm also an innovation fellow. And I lead customer experience research at a cyber security agency. And I'm really a passionate about inclusive design and inclusive research efforts. And this is something that I study a lot as well as practice. And part of the reason is is because I think that when we solve for one, we can extend to many. And that is about speaking to the possibilities that lie in innovation. And when we talk about solving for one, you know, this is really about understanding, you know, for instance, in this case, who's being excluded and how we can design better and research better for those folks and making sure that they're included. And so I've talked a little bit about exclusion. And typically how this shows up in our work is we're excluding seniors, sometimes folks living remote and rural areas, women, immigrants, people with disabilities, racialized, the LGBTQIA plus Two Spirit groups, as well as low income, low literacy and indigenous. And, you know, I've mentioned inclusive design and research. And if you want to learn more about this, Microsoft has a really great inclusive design toolkit. And as well as what you see here is from Ontario government. And so encouraging to definitely look more into this. But to me, the group of people that you described, it sounds the phrase that comes to mind is traditionally is the ignored and underserved. Definitely. And I think that this is what it's all about. And when we talk about solve the one and extend money, and, you know, there's just so much that can be done when we when we recognize include exclusion early on and do something about it. And with that, let's kind of we've been talking a lot about disability. And to really just go into this for a second, there's different types of disabilities, physical, cognitive, auditory and speech and vision disabilities. And throughout somebody's lifetime, they can have one disability, they can have many, it can be a range, it could be permanent situational, it could be temporary. But just know that these are just some of the ways and naming conventions and groupings. Then there's also universal design. And this is all about design that's usable by all people to the greatest extent possible without the need for adaptation or specialized design. And this was originally coined by Ronald Mays, who's an architect. And we think about this not just in physical spaces, but also digital environments. And then there's accessibility. Accessibility is the measure of a person's ability to perceive, understand and interact with a product service or environment. And accessibility principles are essentially poor, which stands for perceivable, operable, understandable and robust. So for instance today, I describe a lot of what is on the screen for someone who may have a vision disability. Hopefully this video will have captions so that somebody who can't hear will be able to read and follow along. And so these are accessibility, this is what accessibility is all about, is just ensuring that people with disabilities are able to access the information or not just information, but the experience overall. And so with that, I want to share this quote by a researcher named Lisa Isioni. And this quote goes, studies of people with disabilities show that most don't view their lives as tragic. She added, they figured out how to get around in a world that wasn't designed for them and view their lives as good quality. And that's an important thing to call out. That especially, you know, when you see somebody who has a visible disability, but just also know that there's also invisible disabilities, we can't assume the worst and we can't adopt what something that is called ableist or ableism, which is a bias. And Joel, maybe you can kind of talk about that more. So simply, but ableism is really condescending to people who you feel have less abilities than yourself. In the South they call it paternalism, same type of thing. I am the smart, strong person. I will help you, you poor, disabled, poor, weak person. You know, it's a little bit, it's a condescending attitude. But let's go back to Lisa. I totally agree with that comment as I lost, as I've been losing my eyesight for a long time. Yeah, of course it was frustrating losing my eyesight, but I don't consider myself disabled. I consider the environment I'm in disabling to me because it doesn't consider my needs. That's really what Lisa is talking about here. For me, I still have the same identity and I have the same goals as when I could see 2020. You know, these days I still need to work. I still need to feed my children. So eyesight may be an obstacle or a challenge, but it's not my identity. Thanks for that, Joel. And I think you bring up a really important point, especially in the work that you all are doing to consider ability, identity, habits, and preferences. And so let's talk a little bit more about the landscape that exists. And so in the 2020 Disability Inclusion Report by the World Bank, what was reported was that one billion people or 15% of the world population experienced some form of a disability. But then there's also this notion that people with disabilities are not a solitary market. And the Centers for Disease Control mentioned that one in five people, for instance in the United States, have a disability. And then there's that four out of five that care about them, that are their friends and family and part of the communities that they belong to. And so with that, it's also important to note that in 2020 in the Global Economics of Disability Report, this market influences 13 trillion in annual disposable income worldwide. Now back to Lisa Izzione's research. So in the Health Affairs Journal in February 2021, she along with other researchers published an essay entitled Physicians' Perceptions of People with Disability and Their Healthcare. And just to kind of highlight some of the issues, especially in healthcare, what was mentioned in this essay was that physicians associate disability with the worst quality of life. And that's a finding that may contribute to care disparities for people with disabilities. And so just to kind of put an example that out there that Lisa kind of mentioned, you know, somebody who's in a wheelchair that has breast cancer may not necessarily hear from her or his physician about, for instance, reconstructive surgery. And so with that in mind, I think that, you know, the assumption there is that they don't care about beauty or physical appearance. And so once again, it goes back to care disparities. And it also extends to, for instance, during the surge of the COVID pandemic in March 2020, the Health and Human Services had to issue a warning to healthcare providers that people with disabilities should not be denied medical care on the basis of disability or perceived quality of life. Absolutely, Pia. So I mean, there's clearly a systemic problem in healthcare and just the medical field in some ways in general. A lot of times people are considered like clinical subjects rather than animal people. The reality is there's a lot of assumptions made by healthcare professionals when dealing with somebody in a patient relationship. They treat them more like something to be moved or something to be fixed rather than a person who has needs and has a serious problem that they need to be heard and considered. Unfortunately, that doesn't happen. But the reality is everybody in the system, the human, everybody needs to be treated with some dignity and respect and be listened to, especially in a crisis situation that many of our wonderful medical people are always in the middle of. All right. Thanks for that. And with that, let's go ahead and bust some myths. Absolutely. So what we've been talking about so far is pretty dry and serious. So Pia and I thought we could make this a little bit of fun by kind of putting this into a myth busting model. So we have three myths for you today and who better to introduce the topic than the cast of the popular 90s TV show, The Mistbusters. So there they are decked out in their leather jackets and pretty serious looks taking stock of the situation and ready for a challenge. And hey, look at that guy with the braid. He's going to be troubled. So let's go on to our myths. Pia, what's our first one? All right. Myth number one, people with disabilities don't matter because there is nothing that can be done for them. And so on this next slide, what you see is a vintage pin that says autistic and proud and along with the autistic network international. And then there's a photo of veterans protesting and some of the signs that they're holding say, how about a Brooklyn VA hospital? Another sign is don't make promises. And then another sign says, how dare they take it away Joel? Sure, Pia. So to me, these images invoke a lot of feelings. And it really makes me think about how all people want independence and autonomy. They want their rights. They want to be treated properly. So that pin, for instance, it shows that even when somebody has a disability, they're still a person, they're proud of who they are. So they're wearing that pin because even though they're autistic, it's not a tragedy for them. It's something that they appreciate and it creates their identity that makes them different. It makes them special. And then pictures of the vets protesting. Who doesn't want healthcare? These are guys that want healthcare in their neighborhood. They fought in the war now. Why not have healthcare to help them with problems that maybe they gained during warfare? And we look at this image and we think about the disability rights movement. But the disability rights movement is an extension of the civil rights movement. It's really all one thing. Even though we think of civil rights as Martin Luther King and Rosa Park, these guys that you see protesting for the VA, they could have just as easily been in the sit-ins and those bus boycotts. We all have these needs and the civil rights and disability rights laws, they aim at a lot of the same things, equal and fair employment. Right to access the public spaces, ability to free speech. It is focused on rising above discrimination. And with that, let's go ahead and transition into this collage of different assistive technologies. Take it away, Joel. Sure. So this is a pretty complicated image with a lot of interesting technology that you probably never have seen before. So that really makes us both think that we probably should be fine assistive technology here. So it really is what it sounds like, assistive technology. So it's technology that you use to assist yourself in achieving a certain goal, right? So that's super broad. And in fact, that's reflective of assistive technology. It could go from very simple to very complex, like for instance, a magnifying glass, as I said, assistive technology. And when you think about it, it may not even have a frame or a hand on it. It may just be a piece of glass or plastic, that when you put something underneath it, it magnifies and you can see it easier. Something more, an example of something more complex. Think of some of these complex wheelchairs that have motors, or think of some of these types of recognition software that use AI and machine learning to say, for instance, take an image and describe it to a blind person and then build up and understanding it with the elements and the image over time and then get better at being able to describe surroundings. Yeah, and I think that an important call out, especially for medical device manufacturers and biohackers, is to think about the next version of assistive technology and also new devices that are being created. What's the best way to integrate and thinking about compatibility, especially in the research that I've done in the past? Another also consideration is the level of expertise. Some people are very new in using assistive technology and some people are experts. And sometimes there's just still more to be done and more to be created. And that kind of brings us to this next image here of somebody. Yeah, I wanted to talk about something just before we move on here. And it's a real call out to this audience, specifically people who are hackers and innovators and people who think beyond the narrow scope of things, like how do we do this? Well, the real thing about assistive technology, it is the result of adaptation. It's people having a need for something. This guy in the wheelchair, he's going uphill. He actually needs to adapt by building a stronger motor. Or you either are thinking about how you can adapt to a situation to fit the place better, or how can you create tools to help you adapt better? It's really what has led to innovation in the past. And there are a lot of different technology and devices that we think about when we think about the space. If you've ever used a GPS in your car, that was really something that was originally solved for by blind people. Your talking GPS is something that was originally conceived to help a blind person be able to navigate through their environment without being able to physically see a map. And think of how we're benefited here, where when you're in your car and you're crying to get someplace you've never been before, you don't have the Thomas guide on your lap anymore. And you don't have to worry about having to quickly look at the map and then look up before you get into an accident. Now you have this really nice voice telling, giving you the directions for your next turn ahead without you having to look at anything. You can keep your eyes on the road and stay safe. And there are tons of different examples of assistive technology that comes from adaptation that's led to innovation that's helped all of us. So, IPA, I didn't need to interrupt but I thought that was a really important thing that we needed to say here. Oh, this is such an important point and I'm glad you brought that up. I think that one of the things that you're seeing here is just experimentation and also hacking. And this is a group of students at the Massachusetts Institute of Technology during their assistive technology hackathon because there's a lot that exists but there's still more to be done. And so with that, people with disabilities don't matter because there is nothing that can be done for them is completely false because there's so much to be done. And so moving right along to myth number two, cyber attacks don't affect people with disabilities. And with that, I'm going to turn it over to Joel to explain this movie reference. So this is a screenshot from the movie War Games. It's an old movie from the 80s. In fact, it's so old that Matthew Broderick was a teenager in this movie and he plays the teenage hacker that accidentally breaks into the Department of Defense and thinks he's actually hacked into a game company and he's looking at their newest games that haven't been released. But inadvertently, he starts the nuclear countdown and the rest of the movie is him trying to figure out how to stop the clock and keep the world from exploding. And really that calls out some of the things that we have to consider the consequences of just focusing on innovation and not thinking of the big picture. Things like security and privacy and thinking about how people are diverse and they have different needs and they have different ways of achieving a goal. One size does not fit all. So when we're thinking about a solution, we should be thinking about the different fits of people and how different people with different abilities would approach something. All right. And with that, here is a new patient intake form. Yeah, this reminds me of just a lot of the security and privacy issues that we face when we're in a healthcare situation. We are super vulnerable at that point. Everybody is. But in some cases, people with disabilities may be more vulnerable and more at risk, just due to the nature of their challenges. So think about it in terms of cybersecurity and identity theft. A lot of these intake forms are asking a lot of detailed information that's really specific personal health information or personal policy information that if it got into the wrong hands, think about the consequences. And one issue that we've seen come up is people with disabilities may be slower to recover from an identity theft attack than somebody who doesn't have any challenges. Think about, for instance, a website that has credit reporting on it that you can get your identity back may not be accessible to everybody and it may not be accessible to certain specific people with disabilities. Additionally, think about other things like, for instance, physical situations where social engineering could be used against the person with the disability. I'll give you a scenario, say person in a wheelchair rolls into their doctor's office and it's their first time there, so they have to fill in the patient form and think about a whole lot of information on there. I'm sure the image that he has put on the screen for that intake form shows you things like social security. So the person comes into the office in the wheelchair and people assume that they can't fill out the form so they want to help. And of course that's a commendable feeling, but they may not need that help. And also, even if they do need that help, who's the person that's helping them? Is that person at the disability at risk from that person who's saying that they're going to help? Oh, sir, can you give me your social security number? Oh, yeah. And what's your mother's main name? Those are two pieces of information that could steal somebody's identity pretty quickly. And this person in the wheelchair may just think that they're being helped, but in fact, they're now a victim on a whole new level. And so with that, cyber attacks do affect people with disabilities and sometimes the consequences are even more severe. And with that, let's go to myth number three. Innovation and emerging technologies in healthcare and science will save us all. So here you have nurses standing next to different types of scales. But the one thing in common with these scales is that you actually have to step up and stand up in order to use them, turning it over to Joel. Yeah. So when I worked on the medical weight loss application for for the company, they really were focusing on health weight loss for people who are more vitally obese. So they really had some great innovative scales that they had created. So one of the requirements of the scales that it should be able to support a thousand patterns. And also, this was one of the first biometric scales that it seemed. So a person standing on the scale could hold the handles and then biometric information would be sent to our databases and we'd be tracking their water intake and just different other additional healthcare pieces of information addition to the weights that would all create a big picture. And this was a commercial application of it. So it was also an accessible in the way that there was a big readout on the scale. So if you're looking at it from far away, the numbers were clear enough that you could read them. And also it made it was accessible because the data it would send out, we could give that to you in a list so you could see your charts and you could see your graphs and crack your progress. We see this now making its way into home health care. For instance, the scale I use here at home now is low emission Bluetooth enabled. So when I stand on the scale, even though I can't see the numbers, that scale recognizes me and then it's tracking me and it's sending that information to my phone. So I get the tracking for my weight and water intake and just like the weight over time, like the fat intake, just different things, my BMI, it's doing all this stuff. But it is an extension of these scales that I was seeing 20 years ago. There's a lot of technology like this. And the next image here is the scale tronics. And in this scale, somebody is able to easily be in a wheelchair in this sitting position and be weighed. Yeah, simply there's a ramp there and that makes it accessible. All right. And in this image, there is a scientist, a woman who has a disability, a physical disability, who is fully capable of doing this work. And there's this popular saying by disability activists, nothing about us without it. Yeah, Joel, care to elaborate on that? I love it. You need to have representation of the people that you're trying to help. Without that, you're just assuming things. And without the research, you're not allowed. It's just luck that gets you a successful product. You're really at real risk. Right. And so with that, in debunking myth number three, innovation and emerging technologies in healthcare and science will save us all. Well, obviously it can't save us all if it has anything related to exclusion, whether that is a specific demographic or segment, or if it's the actual technology itself. And then there's also who's doing the work. And that is why early on we started with this question, what initiatives can the disability, medical manufacturers, regulators, cyber research, citizen science, and biohacker communities collaborate on? And we started with this question and we're also going to end with it. And hopefully this presentation gave you more insight to not have inspiration, but to actually have the motivation to do something. And also the provocation. And with that, any closing thoughts, Joel? I think it's a community effort. When we have thinking about overall community, and we have representation from different groups like disability, medical manufacturers, regulators, actors, innovators, technologists, just the whole group of people thinking about a problem together, we come up with some amazing stuff. We urge you to build that community and think about the people around you and think about how we can do it together. All right. And with that, we are so thankful for to the biohacking village. And of course, we're so excited to be a part of DEF CON. And please keep in touch. Joel, what's your Twitter? It's jpi4a11y. A11y is an acronym for accessibility. So we appreciate you watching. And Pia, what's your Twitter handle? Mine is P-Zaragoza. So it's P-Z-A-R-A-G-O-Z-A. And enjoy the rest of the conference. Take care, everyone. Yeah. So I said it before, we thank you for watching, and we hope you enjoy the rest of the conference. Thanks so much. Take care. Be safe.