Sam Proulx 00:01 | Hello, dear friends, and welcome to another incredible episode of The InclusionHub Podcast. This is your host Sam Proulx, Accessibility Evangelist at leading accessibility software platform Fable. As you all know very well by now, I'm also blind. 

Sam Proulx 00:17 | Wow. I'm just so thrilled to speak with you all once again. And right out of the gate, I want to extend just a tremendous thank you to you all for tuning in, and being such integral parts of this important, ongoing conversation about digital accessibility, inclusion, and so much more. I also want to mention up here at the top that, as always, we're brought to you by digital accessibility and inclusion resource directory and community InclusionHub[dot]com's Founding Partners: leading customer relationship management platform, Salesforce, HubSpot Diamond Partner Agency, Morey Creative Studios, Fable, and free blind and low-vision app Be My Eyes, which I use and love. 

Sam Proulx 01:03 | So I want to use this episode to revisit some of the core themes and insights our many guests have been sharing with us throughout this podcast series. And then, most importantly, I want to look ahead. Why? Because it's true our present is the culmination of our past, and our future is a manifestation of the thoughts and actions of our present. We, now at this exact moment you're listening to me, possess the immense power to change the future, and alter what's still yet to pass. 

Sam Proulx 01:41 | In this context, we've consistently stressed the importance and ethos of 'Nothing About Us Without Us,' of always involving folks with disabilities in any discussion about, and every stage of, any meaningful improvement. This includes design and development, all the way up to testing, implementation, operation, maintenance, and updating. We've also reflected on the extraordinary gains of the disability rights movement, from the streets and the courtroom to the digital realm. We've tackled obstacles and barriers, covered landmark civil rights legislation, such as the Americans with Disabilities Act, or ADA, and analyzed the deeper mechanics behind the rise and prevalence of the Web Content Accessibility Guidelines, or WCAG. 

Sam Proulx 02:35 | Well, what's next? What's keeping fighters and leaders in this movement up at night? What do we all need to be aware of regarding our own participation in this quest? What roadblocks continue to thwart our efforts? And what potential improvements can we make, in addition to all those we've already outlined thus far in this series? 

Sam Proulx 02:56 | Continuing this crucial conversation are several experts and, dare I say, heroes, whom we featured before: internationally recognized disability and human rights advocate, Judith Heumann; civil rights lawyer, founding director of the nonprofit Disability Rights Education and Defense Fund, and one of the ADA's chief architects, Arlene Mayerson; lifelong disability rights advocate Jennifer Keelan-Chaffins, who helped force the passage of the ADA by her participation in the Capitol Crawl when she was just eight; and Laura Kalbag, cofounder of the nonprofit Small Technology Foundation, and author of the book 'Accessibility For Everyone.' 

Sam Proulx 03:43 | This episode being dropped in December, I'd be remiss not to mention the International Day of Persons with Disabilities, celebrated annually worldwide, each December 3. It's commemorated by the United Nations, World Health Organization, and governments and organizations across the planet. It's a day dedicated to promoting the rights and well-being of persons with disabilities at every level of society and development and raising awareness of the situations of persons with disabilities in all aspects of political, social, economic, and cultural life. 

Sam Proulx 04:20 | That's another important fact I outlined from the start of this series, which I'll repeat here: an estimated 15% of people on this planet experience a disability. Living with a disability is therefore not the exception. Disabilities know not race, sex, age, nationality, nor socioeconomic status. Disabilities do not discriminate. They are not relegated to one country. They do not judge. 

Sam Proulx 04:54 | I can think of no better person to not only provide some historical context about the global struggle for true accessibility, equality, and inclusion, than Judy Heumann. Here she is speaking to the importance of 'Nothing About Us Without Us,' and reflecting on some of the incredible gains made regarding greater integration in the workforce, yet outlining how much further we still have to go. 

Judith Heumann 05:19 | What's valuable about what's happening is that organizations like the American Association of People with Disabilities, which started coming up in the 1990s, and is not a duplicate of the American Coalition of Citizens with Disabilities, but is the leading organization now in the United States—not that there aren't others—but the American Association of People with Disabilities is really, I would say, one of the leading powerhouses. Its board is controlled by disabled people, its staff is controlled by disabled people, and it's a very high-level group of people who are working in the organization, as well as who are on the board. As a result, they're influencers that are able to be pushing agendas like accessibility in technology. 

Judith Heumann 06:19 | But I think we have not yet arrived. And the logic of accessibility for technology is something that too many people still are not taking seriously enough. But I do think that as the disability community is getting stronger, as companies—major companies—are really recognizing both their legal and universal need to ensure accessibility—you know, your Googles, your Apples, your Microsofts, and others now have reasonably large numbers of disabled people working in these companies in more senior-level positions. So that means that there are people who are [in] part hired to really keep bringing knowledge and expertise into these companies, to be ahead of what should be happening, to make sure that things are accessible. 

Judith Heumann 07:28 | I would say, you know, that aspect is really important, because going back to when people like myself didn't go to school, right now you've got [Section] 504, you've got the Individuals with Disabilities Education Act, you've got the Americans with Disabilities Act, all of these laws in part are dealing with disabled people going to school, going to universities, not being discriminated against if they're qualified to enter into certain programs, whereas before 504 you never saw a disabled person studying medicine. You might have seen someone who was a doctor who became disabled and continued practicing. But it was very unusual to see a disabled person in that profession, or as a teacher, or, you know, I got my job by going to court.

So these things have been really important— too slow, obviously. But nonetheless, I think we really are making important progress, where we are talking about a growing number of disabled people with all kinds of disabilities, who are working in a broad array of jobs and really are having an influence internally within their organizations, not yet as much as it needs to be, but much more than it was 10 years ago.

Sam Proulx 09:09 | Just incredible, incredible insights from a truly remarkable human being. I could listen to her for hours. Here's Judy, again, discussing her involvement in the global movement for change, and the importance of the United Nations Convention on the Rights of Persons with Disabilities, the first comprehensive human rights treaty of the 21st century, and first human rights convention to be opened for signature by regional integration organizations. No, the United States has still not ratified it.

Judith Heumann 09:46 | So the disability rights movement has been growing internationally for decades. I did my first traveling outside of the U.S. in the 1970s. I went to a program in Norway, that was run by the International Red Cross, which is the only program I've ever seen, actually. I think it had about 25-30 people, half of them had disabilities, and half did not. And it was a 10-day program at a Norwegian camp. And the purpose was to bring people together to talk about the issues of disabled and non-disabled people working together. And at that camp, I was there, and a dear friend of mine who passed away, named Colin Konkola, who became a very important international figure, first in Finland, starting a Centre for Independent Living, then being a member of the Greens and being a member of parliament, and a member of City council, and became the president of a group called Disabled Peoples' International. And there were many disabled people, you know, around the world who were getting involved in international work, however, a whole other very important discussion. 

Judith Heumann 11:10 | But ultimately, one of the objectives of this global work was to be able to get the United Nations to be focusing more on disabled people, because they focused on children and women and humanitarian aid, and on and on, but disabled people were very, very marginalized. This group, Disabled Peoples' International, [and] Rehabilitation International, were two of the leading organizations that were really pushing this global agenda. And then in the 2000s, the United Nations began to create and ultimately pass something called the Convention on the Rights of Persons with Disability, which now has been signed or ratified by more than 180 countries around the world.

Unfortunately, the United States is not one of them. When I worked in the Obama administration with Secretary Clinton and Kerry, we were unable to get the vast majority of Republicans to support ratification. So we are not playing the role that we could be playing if we had ratified, because we can't really speak at the UN, we can't serve on this international committee that's working on implementation of the CRPD, because we haven't ratified. 

Judith Heumann 12:48 | But I would say that there is a growingly robust international movement that organizations like the World Bank, the State Department, USAID, other development agencies around the world are looking at disability in a way they didn't before. And because ratification of the CRPD at the country level, basically a country is agreeing that they will implement these 42 articles, which include things like creating education programs so disabled children can go to school and adults can go to school, an article on employment, an article on transportation, an article on women's rights, many, many, many articles. So once they've ratified, they've agreed that they will be working towards these objectives. 

Judith Heumann 13:44 | Now, I would say, again, many of the countries is good progress. There is now also a group called the International Disability Alliance, and they are made up of at least 13 international organizations, so it's the biggest umbrella organization, which includes disabled people with all kinds of disabilities—psychiatric, blind, d/Deaf, hard of hearing, parent groups, on and on. So you can see the expansion, we have so much further to go. But in my lifetime, I think, and I don't mean to emphasize me, but there are so many people like myself, in the U.S. and around the world who have the same vision of what we want to see. And we're not where we want to be, but clearly, clearly, we're not where we were.

Sam Proulx 14:47 | I'm going to reiterate Judy's last line there. 'We're not where we want to be, but clearly, clearly, we're not where we were.' So true, and so truly amazing. Now, in that same vein of progress, yet still striving, I must mention the ADA. As I've noted in previous episodes, it's impossible to fully quantify the impact this singular piece of legislation has had on not just people with disabilities living within the United States, but globally. It's been described as the very first piece of civil rights legislation for the disability community, and its reaches are global. It has led to similar laws and regulations drafted and enacted by nations across the planet and remains an inspiration to all of those striving for human rights around the world. 

Sam Proulx 15:43 | As we've discussed before, the ADA has since become one of the de facto hammers used in the ongoing struggle to build a more accessible and inclusive web as thousands upon thousands of lawsuits have been filed to force companies to change their ways. We were honored to have featured one of its chief architects, Arlene Mayerson, on the fourth episode of this series, in which besides providing some incredible, incredible insights regarding its historical backstory, she delved deep into its present-day applications regarding digital accessibility. Arlene also explained she and her team's work forcing Netflix and other streaming services to provide captions, essentially making accessibility a standard practice. Here she is, again, continuing her conversation, this time discussing other challenges in the fight for a more accessible and inclusive web.

Arlene Mayerson 16:39 | So what I didn't mention, because Netflix did not include it, but the issue of blind access is, you know, really something that's been developed for decades. There are international standards, there are people who have been working on it forever. And again, same thing if a blind person—if the programming is not compatible with a screen reader, they're lost, can't use it. So there's a lot of issues, of course, and just want to make sure you know about blind access. The thing about Netflix and those kinds of entertainment streaming cases that has to do not so much with reading, and having, you know, voice output, but it has to do with description—like describing what's going on that you can see. So that's another, you know, burgeoning area. 

Arlene Mayerson 17:26 | I'll be quite honest with you right now, the blind community and d/Deaf community we're in a quandary because there's still courts that are saying, 'You're not covered by the ADA unless there's a bricks and mortar structure.' So I'll give you an example of the 9th Circuit, which is, you know, usually pretty decent. The 9th Circuit said, [a] case against Target, but the website wasn't accessible. So the court came out with this ruling—the Nexus ruling—the website's covered if there's a nexus to a bricks and mortar building.

The 11th Circuit has gone one step further, and said, 'You have to show that the lack of access to the website impedes your enjoyment of going into the bricks and mortar building.' So we have a real split in the circuits. Now, what's our dilemma? And I'm just being—I don't know whether I should be or not honest here—usually, when there's a split in the circuits, it gets decided by the Supreme Court. There's no one in the disability rights movement that I'm aware of, or civil rights movement in general, who really wants the Supreme Court deciding anything for us. And so what do you do?

Right now, it's a real dilemma between we keep on bringing lawsuits—oh, there's also a whole industry that's developed around, 'Oh, we'll fix your website for blind accessibility, all you need to do is install our one magical thing, and then that one magical thing is going to fix it.' Well, those are also really bad, because they don't fix it, then people think they are accessible, and they're not. I mean, so you know, there are a lot of issues right now. 

Arlene Mayerson 19:08 | So what do you do? You have the possibility of taking one of these cases all the way up, which the defendants who lose want to do, and we're like 'no, please.' But with the Supreme Court, the one who loses in the circuit court gets to decide whether to appeal. So in a way, the worst thing that can happen to a disability case is you win in the court of appeals because that means the defendant could decide to take it up. And that's somewhat tongue-in-cheek, but I think you understand what I mean.

You can do legislation. But you know, we've had some defectors in Democrats in legislation on some ADA issues. In recent years, there's been a big push to get what's called a Notification Act, which says, you know, before you sue me, tell me what's wrong with my place. Anyway, so that's never passed. And it sounds very reasonable, but really, really wasn't. You know, we could try to do it through regulations. And the Department of Justice really, really, really needs to be working hard on those regulations, but the courts can decide to ignore the Department of Justice if they so choose. 

Arlene Mayerson 20:18 | So right now, really, right now, I mean, probably had no idea how corrupt we are. Because right now, there's a lot going on to decide, like, what do we do? It's like a rock and a hard place, like, we cannot allow people to continue to be excluded from commerce, because they're blind, and the screen readers are not readable, but cannot, on the other hand, the options are, you know, are scary, and concerning. So right now, a lot of people putting their heads together, trying to think of, like, you know, 'We're good where the where the good cases are.'

But you know, just for your listeners who might not know, there's only one uniform decider in the United States, that's the Supreme Court, otherwise, it goes by circuits. And each circuit covers a certain amount of states. And those states are then covered by whatever that circuit decides. So we have pockets of states that say, 'Yeah, internet is covered, absolutely needs to be accessible, no question about it.' And then we have other states that are under another circuit that says 'You have to have a bricks and mortar building,' and then we have another now outlier, the 11th Circuit with a bunch of states under it, that say 'It has to affect your enjoyment of going into the place.' So, you know, things that differ around the country in terms of your ability to demand these things.

Sam Proulx 21:49 | I know I keep saying this, but truly incredible. It also makes me glad to know that there are people like Judy Heumann and Arlene Mayerson out there, sometimes behind the scenes, other times out in front, constantly fighting on behalf of us all, because again, disabilities are fundamental aspects of the human experience. And greater accessibility and inclusion resonates in ways that touch us all. 

Sam Proulx 22:17 | Well, there's another special person out there who's also been fighting on behalf of us all, literally, since she was an infant, Jennifer Keelan-Chaffins, as I mentioned at the top of this episode, helped force the passage of the ADA by literally crawling the U.S. Capitol building's 84 steps in a protest known as the 'Capitol Crawl.' Born with cerebral palsy, she joined about 60 others who left their wheelchairs, and mobility aids at its bottom to do so, and consequently, helped change the world. Jennifer shared her experience with us in Episode Three. And here she is, again, continuing that conversation, while stressing the importance of the unfinished work that still lies ahead in the digital world and beyond.

Jennifer Keelan-Chaffins 23:06 | This just goes to show that our work is not over and it's not finished. And that we need to continue to use our voices to create change. And we need to continue to push ourselves in those spaces so that we have a more diverse representation in those spaces. And so that, to me, is why it is so important to continue to, like I said, you know, use our voices to create those changes, continue to pursue careers in that industry for people with disabilities, continue to have those creative spaces where we can just as easily go in and out of the digital space, as we now have the ability to go in and out of the physical space, if that makes any sense. Because the purpose of the ADA is to have full and equal access to all areas of our lives. And that includes, you know, cyberspace. 

Jennifer Keelan-Chaffins 24:14 | This is why it is so, so important that we continue to raise and bring attention to those issues because it's our voices that gives us the power to enforce the ADA and to make those changes. It's our voices and it's our persistence that will also break barriers in the digital space. You know, I always say we are stronger together than we are apart. The same is true when you're talking about the digital space and the things that need to change in the digital space. As far as my own opinion and my own experience, I believe that access is for everyone. And that means not just within the physical space, but also within the digital space. And it is just as important to use our voices to make those changes in that space, as it is in the physical space. 

Jennifer Keelan-Chaffins 25:24 | You know, if you see something that that needs to change, then the first thing that we need to do is we need to bring it to everyone's attention. And that means talking to our city and state leaders. That means talking to our congressmen and women. That means talking to web designers. That means talking to companies that use, you know, the digital space as their primary source. That means getting that conversation going, and letting them know that it is just as important to have access to the digital space as it is to the physical space. And then if we're still being ignored, and we're still, you know, not getting our voices heard, then that's when you sometimes can take it to the next level and do protests and do digital petitions and, and things like that. But it's our voices that get that process going first.

And so this is why it's very important that we continue to speak up and speak out, especially when it comes to the digital space because the digital space is often referred to as the new frontier. And that is because there's rarely any regulations when it comes to that. And that's why, again, it's important to continue to do that, continue to acknowledge and raise these issues, because change only occurs when we speak up and speak out.

Sam Proulx 27:09 | So inspiring. I'll say it again, so inspiring. The fact that Jennifer was just a child when the ADA was enacted, also gives her an interesting perspective on the disability rights movement as a whole. Here she is, again, explaining what it is to be a member of what she refers to as 'Generation ADA.'

Jennifer Keelan-Chaffins 27:32 | So many of my generation and the next generation, we often do view ourselves as 'Generation ADA,' but I'm also in between, because I am young enough to see the changes that were made, the immediate changes that were made because of the ADA, and yet old enough to know what it was like, before the ADA.

For me, personally, you know, it goes back to how—the things that I were taught, and how I think of the ADA and the disability rights movement as a child. For me, personally, you know, just as I felt it was my duty to represent my generation and future generations of kids with disabilities, I also feel that as an adult who's gone through this, it's also our responsibility to educate and pass this on to the next generation, because they are the ones that are going to carry the ADA through history and through the future after I am gone, after my mentors pass away. They're the ones that will continue on the ADA's legacy. 

Jennifer Keelan-Chaffins 28:52 | And so this is the reason why it is so important to teach the history, not only so that they know the history, but so that they can use the history to empower themselves. Because a lot of the things that I talk about in my presentations is the personal empowerment piece of the ADA. And that is often forgotten and ignored. Everybody knows, you know, that the ADA is a civil rights law. And that is true, but it's also about personal empowerment, and the person's individual journey, and how they can use the ADA to empower themselves and exercise their civil rights.

And so this is why it is so, so important. And now that we have this generation that is growing up in the digital space, it is just as important to have that generation be able to use their voice and enforce their rights on the web as it is, you know, if they're going to the grocery store. And so that's why I feel so, you know, so passionate about this because I know that, you know, as someone who is, you know, being looked up to by the next generation, it is my responsibility, and it's everyone's responsibility, to teach this important part of history, so that it empowers the next generation.

Sam Proulx 30:30 | Generation ADA. I like that. I also recognize another seismic shift experienced by this generation, which resides at the heart of any discussion about improving digital accessibility and inclusion: technology. As you're likely all too well aware, technology advances by leaps and bounds these days. What was cutting edge just several years ago, or a short few months ago, even a few weeks or days ago, in some cases, is now obsolete. And as the web continues to solidify its stature as the go-to place for people all across the globe, to not only get information, but everyday necessities, ranging from vital products and services, it's important we remain steadfast, and up to date on other looming hazards on the cyber superhighway, if you will, which we may not be too aware of. 

Sam Proulx 31:27 | As we've discussed in previous episodes, a cottage industry has sprung up in the wake of such an inaccessible web, promising quick, super quick fixes to prevent the threat of an ADA non-compliance lawsuit. A frequent tactic is overlays, apps, and installations that instead of resolving the fundamental issues underlying a website's flawed infrastructure and code, attempt to use AI and other techniques to fix the issues without requiring anything from the companies using them. However, in the real world, many in the disability community have had less than positive experiences with overlays. OverlayFactSheet[dot]com has collected several testimonials on the matter from people with disabilities. As tech continues its eternal evolution, it's crucial people with disabilities are not left behind in its development. Again, folks with disabilities must be involved at every stage along the way. 

Sam Proulx 32:28 | Our next guest is Laura Kalbag, who stressed several of these key points in several previous episodes. And as technology further mutates, she harbors another important concern. Here she is continuing her conversation and explaining a very real, constantly emerging threat.

Laura Kalbag 32:49 | One of the things that I tend to talk about a lot is privacy. Because one of the problems that I worry about a lot today is that we expect people to give up their rights in order to get access to things. And so specifically when we're talking about the use of frameworks and libraries to make things more accessible. So you might be using a translation framework for your site or your platform, and it just so happens that that translation framework is sending everything that people are typing back to a central organization, who might sell or use that data. And we are kind of trading off our ease of use as developers and designers over the experiences and the rights of the people who are actually using what we're building.

And I think what we need to consider is people who have accessibility needs are often the same as other marginalized groups. These are people who are the most vulnerable. These are people who are often taken advantage of or discriminated against, not just by society in general, but also by governments, and we need to make sure that we are protecting people's rights when we're building things. We need to make sure that by making things more accessible to people, we're not also making them more vulnerable. This is one of the things—that's what our Small Technology Foundation is all about. And it's one of the things that I really care about, it's that intersection of our rights and accessibility.

Sam Proulx 34:21| Wow, I just really again, extend to you all my sincerest, sincerest thanks for listening, and in doing so participating in this important, important discussion. As always, I also want to thank our sponsors. We're brought to you by digital accessibility and inclusion resource community and directory InclusionHub[dot]com's founding partners: Leading customer relationship management platform Salesforce, at Salesforce[dot]com, HubSpot Diamond Partner Agency Morey Creative Studios, which you can visit at MoreyCreative[dot]com, Fable at MakeItFable[dot]com and Be My Eyes, at BeMyEyes[dot]com. 

Sam Proulx 35:06 | Please help spread the word. Visit InclusionHub[dot]com for more information about all of its founding partners, along with insightful blogs and articles, and much more. You can listen or read the transcripts to every one of The InclusionHub Podcast episodes there, too. We're also on all your favorite podcast apps. Very, very special thanks, also, to all of our incredible guests.

Visit Judith Heumann[dot]com to learn more about all of Judy's many projects, pick up her books, and listen to her podcast 'The Heumann Perspective.' Check out JKCLegacy[dot]com to learn more about Jennifer Keelan-Chaffins and her incredible work, including the book 'All the Way to the Top,' chronicling her experience at the Capitol Crawl. Learn more about Arlene Mayerson and all the vital work of her and her team at the Digital Rights Education and Defense Fund at DREDF[dot]org. Also, be sure to visit LauraKalbag[dot]com to learn more about all of Laura's extraordinary work, her nonprofit, the Small Technology Foundation, and to pick up her book, 'Accessibility For Everyone.' 

Sam Proulx 36:20 | We titled this installment, 'The Future is Unwritten' because, well, I truly believe that it is. What will its chapters contain? It's all up to us. As I've said before, you can make a difference. You can be that spark. You can change the world. Until next time, dear friends remember, a more accessible and inclusive world is a better world.