Sam Proulx 00:01 | Hi, all! Welcome to The InclusionHub Podcast. I'm your host, Sam Proulx. I'm also the Accessibility Evangelist at leading accessibility testing platform Fable, and I'm thrilled to be here with you.
Sam Proulx 00:15 | Wow. So in previous episodes, we featured some incredible guests who have outlined the history of the disability rights movement for us, and the ongoing fight for true, meaningful equality, accessibility and inclusion, for all—whether that's discrimination, free access to employment, transportation, and housing, for example, or to the products and services provided on countless sites throughout the web. We've discussed the importance of the struggle's motto and guiding principle, 'Nothing About Us Without Us.'
And one of its most quintessential leaders, Judith Heumann, shared with us some of her extraordinary experiences, joining other fellow disability rights advocates at the historic and oh-so-critical 504 Sit-ins and other demonstrations, which ultimately forced the hands of very powerful elected and appointed officials to enact vital anti-discrimination regulations in Section 504 of the Rehabilitation Act of 1973. These included Judith and many others blocking traffic in Manhattan with their wheelchairs, and literally occupying the federal offices of the Health, Education and Welfare (HEW) Department nationwide—with their more than two-weeks-long occupation in 1977 of the HEW building in San Francisco remaining to this day the longest such takeover of a U.S. government building in history.
Sam Proulx 01:49 | Those protests, and 504's enactment, set the stage for much, much more, especially since that section of the Rehabilitation Act only pertains to programs and organizations receiving federal financial assistance. In other words, there still remained no formal protections to prevent or eliminate discriminatory practices against the disability community and other public entities, private businesses, and much, much more.
Sam Proulx 02:20 | Without some all-encompassing civil rights legislation to protect, ensure and codify equal treatment under the law for disabled folks—essentially a bill of rights, such as the 1964 Civil Rights Act provided for African Americans and women, for example—this community, representing tens of millions of people, or about one in four Americans, would continue to be overtly abused, mistreated, and tortured for their conditions, with no legal recourse. They would remain second and third-class citizens in the very nation which purports freedom, liberty, and justice for all—ditto for the nearly a billion people throughout the globe today who live with disabilities.
Sam Proulx 03:13 | Spoiler alert: That key, oh-so-critical piece of legislation, the Americans with Disabilities Act (ADA), was eventually signed into law on July 26, 1990, by President George H.W. Bush in response to at that point in time, decades upon decades of protests and struggle and activism, waged by people such as Judith Heumann, whom we'll be hearing more from in subsequent episodes, and countless others.
Sam Proulx 03:43 | It's important to remember also, as Judy pointed out for us in a previous episode, that these accomplishments in the ongoing fight for equality are the results of legions. And if you haven't heard that episode yet, be sure to head over to InclusionHub[dot]com for that, and much, much more. Trust me, it's an amazing episode.
Sam Proulx 04:05 | So before we delve into the extraordinary battles waged from places such as the Disability Rights Education and Defense Fund, where people such as legendary disability rights attorney Arlene Mayerson fought relentlessly for the act, ultimately recognized as one of its chief architects, and who we will speak to in detail in another episode—we wanted to take a moment to share the story of yet another extraordinary soul and renowned champion of the movement: Jennifer Keelan-Chaffins.
Sam Proulx 04:38 | Born with cerebral palsy, Jennifer was just eight years old when she joined about 60 others who left their wheelchairs and mobility aids at the bottom of the U.S. Capitol Building to literally climb its 84 steps on their elbows to help force the ADA's ultimate passage.
Sam Proulx 04:58 | Known as the Capitol Crawl, the physical demonstration on March 12, 1990, followed a march from the White House to the Capitol by about 1,000 people to demand the ADA's enactment, and highlighted for the world how inaccessible buildings and architecture impact those living with disabilities. The Capitol Crawl remains a crucial, crucial moment in the history of the ADA, and the disability rights movement, overall.
Sam Proulx 05:28 | 84 steps. They must have seemed like 1,000 miles to an eight year old, in pursuit of a centuries-old dream light years away, just a decade or so earlier. I'm not sure about you, dear listeners, but I get out of breath just walking to the kitchen for a glass of water. My god, so inspiring. And, as Jennifer tells us, her experience climbing the Capitol Crawl—chronicled in the must read book 'All The Way To The Top'—this wasn't even her first protest. Rather, the latest passionate response forged from discrimination, hope, and love.
Jennifer Keelan-Chaffins 06:14 | I joined the disability rights movement when I was six. So I did my very first protest in Phoenix, Arizona, when ADAPT national came to Phoenix to protest the lack of wheelchair accessible buses. And it was actually a family friend and cousin, who introduced us to the disability rights movement by inviting us to attend our first protest in Phoenix. And that's where we met ADAPT national.
And then at our second protest in San Francisco, that's where I met, you know, many of the iconic leaders of the movement. This included Justin Dart, Jr., the father of the ADA, Judith [Heumann]—Judith has known me since I was six years old—Ed Roberts, one of the leaders of the Independent Living Movement. And so that is where I met all of the integral leaders of the disability rights movement, and these were my teachers and my mentors. And they were the ones that not only taught me how to fight for my rights, but taught me how to fight for others' rights as well. And so these are some of the things that I talked about.
Jennifer Keelan-Chaffins 07:25 | So by the time I did the Capitol Crawl, I was already a seasoned activist, because I had already been protesting for two years. And one of the reasons why I felt so strongly about doing the Capitol Crawl was I wanted to make sure that not only was my generation represented in this very important rally and protest, but I wanted to make sure that future generations were represented as well.
And so that's why it was very important to me to participate in the Capitol Crawl. But when I was little, both my sister and I realized when we were very young that there were places that Kaylee could go because she was able-bodied and could walk, but I couldn't. And so we had already experienced discrimination at a very young age because of that, whether it was you know, being denied access to the bus, or being denied access to school, or other public places, because those places were not wheelchair accessible. So we had already been denied access at a very young age. And so when we met ADAPT, this was the first time that I had realized that these were people with disabilities just like myself, who were fighting for their civil rights and the right to be treated like everybody else.
Sam Proulx 08:52 | Imagine not only experiencing discrimination, but at such an early age, being able to recognize its ugly truths for what they are, and then resolving to help end it. I'm not sure about you, dear listeners, but when I was six, I was sitting on the floor playing with toys and primarily concerned with whatever my mom was gonna give me for dinner, and whether or not I could sneak some ice cream from the freezer afterward. Yet there Jennifer was—trying to turn the tide of history and chart a new, more inclusive course for her country, and really, the world. I just can't, really. So inspiring. Truly.
Jennifer Keelan-Chaffins 09:37 | When Kaylee and I saw this, we said, you know, here is our way that we can use our voices to contribute to this change. We decided at a very young age that we wanted to be a part of it, and that we wanted to make sure that not only our voices were represented, but future voices were represented as well. And that's why it was very important for both Kaylee and I to become involved, and to be able to fully participate, because we knew even at a young age, I knew how important it was to not just represent myself, but to represent future generations.
Even at that young age—I was six and my little sister was four—one of the very important lessons that the disability rights movement taught my sister and I, is the importance of "separate is not equal." And Brown vs. the Board of Education of 1954, this is where Kaylee and I got our education about Brown vs. the Board of Education, and about IDEA, and about 504. The disability rights movement is the entity that taught us all about that history, and taught us that yeah, we did have rights, we did have laws that were already in place. But those laws were rarely enforced.
And so this was the reason why we were constantly being confronted with discrimination. Because while we have these laws in place, they were not being enforced and they were being ignored. The disability community was like, we're tired of this, we want to be treated with dignity and respect and be treated just like everybody else. And so you know, out of that was born the disability rights movement.
Jennifer Keelan-Chaffins 11:31 | Another thing that was very, very important to me, was the co-founder of ADAPT Wade Blank, he was a minister and a freedom rider, and he took the lessons that he learned from the Civil Rights Movement and applied them to the disability rights movement. And so again, these were my teachers, and my mentors, and they were the ones that taught me these very important lessons, and lessons that they taught me continue to influence me into the person that I am today.
Sam Proulx 12:11 | As Jennifer explains, her actions that day were both personal, and a culmination of a collective outrage against discrimination, representing countless folks with disabilities who are deprived a voice, or education, or employment, or adequate housing, or subjected to every day abuse and mistreatment simply because of their disability. Such discrimination that manifests outright, or lurking within unenforced regulations, of preexisting mandates, or inaccessible buildings and services—such as the Capitol, the very hall of power, where civil and human rights are supposed to be defended.
Sam Proulx 12:58 | Hers was a modern-day, guttural response to centuries of injustice, to the U.S. and global society, that excluded so, so many. It was a public statement of 'no more,' a physical rebuke to decades of inaction. At that time, with significant improvements possible, with a simple stroke of a pen by a president. Jennifer remembers growing up in a pre-ADA world without such protections.
Jennifer Keelan-Chaffins 13:31 | You know, for me, as a little, young child, it made me mad, it made me angry. But it also made me very determined, especially once I joined the disability rights movement, because that was an outlet for me. You know, joining the disability rights movement, and protesting, that was a source of empowerment, and strength. And that was a place where I could fully, you know, use my voice and express myself, and tell people, and let them see that this isn't right. We are human beings just like everybody else. And we deserve to be treated with dignity and respect, just like everybody else.
My sister and I want to ride the bus together. We want to go to school together. We want to be treated with dignity and respect and not be separated from each other. Because as my little sister would say, it's all about the Browns and education, separate is not equal. You know, joining the disability rights movement was very empowering for me and my sister, because that was the space where we could freely express our determination to make something that wasn't right and correct it. That's the reason why it was very, very important to both my sister and I.
Sam Proulx 15:00 | Each time I imagine the scene of the Capitol Crawl, I find myself more and more in awe of the determination and perseverance of its participants, especially Jennifer. I envisioned this tiny little girl, squirming on her hands and knees, ever-lunging forward on behalf of us all. I've heard her speak about that day: She wore a bandana and carried a rolled up pamphlet sticking out of her back pocket, a message to legislators, she's explained, to pass the ADA. She made that incredible proclamation of her determination that I'll never forget.
[Clip] Jennifer Keelan-Chaffins at the Capitol Crawl in 1990 15:39 | I'll take all night if I have to!
Jennifer Keelan-Chaffins 15:44 | And I'm like, you know, I'm like, eight, nine years old. And I'm going, water, water, water, I need water. And, you know, I've got the little pamphlet in the back of my pocket that we're supposed to hand over to the politicians to get the ADA passed. And they say that, that it was the image of me climbing those steps. That, you know, was the final, final decision to get the ADA passed. And I mean, I just had to do it.
Sam Proulx 16:16 | And photographers and onlookers flanked her every move. Some even tried handing her a cup of water. As she recalls, it was needed.
Jennifer Keelan-Chaffins 16:27 | I remember it being a very, very, very hot day, that day, it was like 80 degrees. And we had gotten wind that the special committees in Congress were delaying the passage of the ADA. And so we had a strategy meeting, the night before we did the Capitol Crawl. And we were discussing what we were going to do to show Congress why it was important to pass the ADA without any delay or weakened amendments, because that was very important to us, we wanted the ADA passed without any weakening amendments.
Jennifer Keelan-Chaffins 17:05 | And so we discussed that night about doing the Capitol Crawl. I remember being so excited that I purposely left my leg braces in the motel room, because I already knew that I was going to participate in the Crawl, I was determined to do that. On the day of the crawl, we marched from the White House to the Capitol. That march is known as the Wheels of Justice March. And then we met at the Capitol, had a rally, and everyone was there. There were senators there. There were different disability rights groups, Gallaudet, paralyzed veterans, all the disability rights groups were there. And we were there to speak with one united voice, and that was to tell Congress why it was important to pass the ADA and why you know why it needed to be done now.
We had already had the support of the Senate, the Senate had already passed their version of the ADA in September of 1989. We even had the support of the president, President [H.W.] Bush. It was the House and the special committees that were delaying the full passage of the ADA. And so we decided that we were going to do the Capitol Crawl to show Congress this is very important. The Capitol Crawl was a visual demonstration for Congress, to show Congress what barriers were like for people with disabilities on a daily basis.
Sam Proulx 18:47 | As Jennifer explains, there were so many elements to this particular demonstration. Perhaps, that's why then, similar to the protests of Judith Heumann, and so many others that came before her, it stands as one of the most important in not just disability rights history, but in American history, overall. Personal yet public, it struck at the heart of one of America's most revered supposed values: Equality for all.
Jennifer Keelan-Chaffins 19:19 | On cue, a bunch of us got out of our wheelchairs, and all of our other mobility devices, and we started crawling up the steps. I remember when I was little there were a few adult organizers that actually didn't want me to do the Capitol Crawl. And they didn't want me to do the Capitol Crawl for two reasons: One, they thought it would be too difficult for me because I was a child. And two, they were concerned that it would send them a message of pity rather than empowerment, and it would send a message of people with disabilities being childlike. And so you know, they told me that I shouldn't do it.
Jennifer Keelan-Chaffins 20:02 | Well, I started getting really upset because I was determined, you know, I wanted to do it, to not just represent myself, but I wanted to represent my generation and future generations. And so I started to get upset. And it was Wade Blank, the co-founder of ADAPT, who came to me and said, 'Why are you getting upset, Jennifer?' And I told him, I said, 'Wade, it's very important for me to do the Capitol Crawl, not just to represent myself, but to represent all the other kids that aren't here to represent my generation, and future generations of kids that aren't here.' You know, for that reason, it's very important to me, I have to do it. And that's when he turned to me and said, 'Well, then you need to do what's in your heart.' And then he took my mom aside and said, 'Okay, Mom, don't look back, don't look back.' And by the time my mom looks back, there's a huge roar, and I'm halfway up the steps.
Jennifer Keelan-Chaffins 21:04 | For an eight year old, that's like climbing Mount Everest, because I climbed 84 steps. When I completed the Capitol Crawl, I was so, so excited. I felt very empowered, very determined, but I also was very exhausted. And so once I reached the top, one of the adults, and I think it was part of the White House staff, or, you know, one of the congressional people, they actually carried me back down and put me in my chair.
Sam Proulx 21:40 | Jennifer translated all the hate, and discrimination, and negativity and pain, experienced by so many people living with disabilities throughout the world, into the fuel, and passion, and fire that ultimately brought her to the top and helped force the hand of the most powerful person of the planet, to sign perhaps the most important law in the land, regarding the rights of those with disabilities.
Jennifer Keelan-Chaffins 22:10 | When I was crawling up the steps, I had a lot of things that I was thinking about. I was thinking about my friends, and how they also experienced acts of discrimination. I was thinking about the things that I was experiencing, and the things that my sister were experiencing. That's why it was so important to me to make it to the top of those stairs, because I knew even at age eight, I knew that I wasn't the only one experiencing those things. You know, a lot of kids with disabilities were experiencing those things. And to me, that's what I was representing. I was representing my experiences and their experiences. And it was those collective experiences that gave me the strength, and the empowerment, and the determination to complete the Crawl.
Jennifer Keelan-Chaffins 23:09 | When the ADA was signed into law, that meant that our rights as full U.S. citizens, and our right to fully participate and fully be acknowledged in American society was finally realized. Because you gotta remember before the ADA, it was legal to discriminate. It was legal not to recognize us as American citizens and fellow human beings. It wasn't until after the ADA was passed, that we were finally, finally fully recognized as American citizens who had the legal right to fully participate in all aspects of American life.
Sam Proulx 23:57 | Yet, as Jennifer explains, just because the ADA passed more than 30 years ago, does not mean it's time for disability rights advocates, members of the community, and supporters worldwide to rest on our laurels. If history has taught us anything, it's that this fight must continue, especially as Jennifer and so many others we've spoken to on this podcast stress, since life and work are shifting ever online.
What does a Capital Crawl look like in a virtual space? I don't know if that's a question the disability community has the answer to yet. Perhaps there's another eight year old out there within the community we just haven't heard from yet. One thing I do know, however, is that our work with the ADA must continue. And its many safeguards for those living with disabilities must extend to the web. Digital accessibility and inclusion are damn well worth fighting for.
Jennifer Keelan-Chaffins 24:57 | One thing that I always talk about is the fact that our work with the ADA is not finished. Just because the ADA passed into law, that doesn't mean that our work is finished. As a matter of fact, our work is even more important now than it was then. Because it is our responsibility to make sure that the legacy of the ADA and everything that went behind it continues, not just for this generation, but for the next generation and future generations. The ADA is more than just a law. It is also about personal empowerment, and what it means to you, and how it can empower you to exercise and enforce your rights and use your voice.
Jennifer Keelan-Chaffins 25:51 | You know, sometimes I think that people think, well, we have the ADA, we're done, we're finished. Uh-uh, it's even more important now, to use our voice, to continue the ADA's legacy and to be able to use the ADA as a tool to continue to empower yourself and continue to empower the next generation. Because when you do things like enforce your rights, or enforce accommodations for work or for school, or use your voice to have yourself recognized under the ADA and all that it entails, you are creating a path for the next person, so that they will be able to use their voice to enforce their rights and to empower themselves. And I think that that's very important.
This is something that just like physical spaces, is really, really necessary, especially since we're using the digital world more and more and more. I think that it is just [as] important to make the digital world accessible as it is to make the physical world accessible. This is the reason why it's very important to continue speaking up and speaking out about this. It's rarely talked about, you know, sometimes I've heard well, it's a digital space, so does it really need to be accessible? Yes, it does.
Sam Proulx 27:29 | Among many other messages Jennifer exemplified and embodied that day, there are a few in particular that are extremely clear to me, and which I hold very dear: You can make a difference. We can all change the world. Our individual actions can wield significant impact. It is important to get off your chair, or your couch, or wheelchair in this case, if you can, and make your voices heard. Every single one of you listening to this podcast or reading along with a screen reader or braille display can help spark significant change, for the better.
Once again, I'm Sam Proulx, the host of The InclusionHub Podcast. I want to thank you all so very much for spending this time with us. And I want to give a very, very special thanks to Jennifer Keelan-Chaffins for sharing her incredibly inspiring story with us. You are a shining light in this sometimes incredibly dark world, and a testament to the power contained within each and every single one of us, no matter who we are, where we live, how old we may be, or what disabilities we do or don't have.
Sam Proulx 28:48 | You can learn more about Jennifer and the Capitol Crawl, and much more at her website JKClegacy[dot]com. Be sure to pick up that book I mentioned at the top of the show, 'All The Way To The Top,' it is a timeless tale with valuable insights for people of all ages.
And please be sure to visit InclusionHub[dot]com and check out the truly incredible work of its founding partners and this podcast's sponsors. We're brought to you by cloud-based customer relationship management software provider Salesforce, HubSpot diamond partner agency Morey Creative Studios, Fable, a leading digital accessibility testing platform powered by folks with disabilities, where I work as Accessibility Evangelist, and Be My Eyes, a free app connecting blind-and low-vision people with sighted volunteers, which I myself use and absolutely love.
We'll be hearing from Jennifer again in other episodes, along with Arlene Mayerson, Judith Heumann and many more, as we continue this critical conversation about the importance of continuing to enhance physical and digital accessibility and inclusion for all.
Sam Proulx 30:00 | I'm going to leave you with a final segment from our discussion with Jennifer when asked to describe the motivation behind 'All The Way To The Top,' because it resonates with me, and I believe it will do the same for you. Until next time, remember: A more accessible and inclusive world is a better world.
Jennifer Keelan-Chaffins 30:21 | I always wanted to be able to tell my story through a children's book, because this is a subject that is rarely discussed and taught in the classroom. And I want to change that. You know, I believe that this is an important part of American history that is often ignored. And it shouldn't be. And we should be able to tell this important part of America's history, so that we will be able to empower the next generation so that they will be able to use their voice to create change and continue on the ADA's legacy.
I'm really, really proud of 'All The Way To The Top,' it has done a marvelous job of opening up that door to the conversation and teaching young children how important the ADA is. And how important it is to never be afraid to use your voice to create change. One of the things that I always say is you don't have to be a grown up to create positive change for the world. You can do it even though you're just a kid. Your voice does matter.