[Speaker 2] Welcome back to Living the Good Life, the podcast where we redefine what adventure looks like when your body doesn’t always follow the standard script. I’m Teresa, and this month, July, is Disability Month. Our friends will discuss more information about the disability community in general. Thanks for listening, hope you enjoy this show. [Speaker 1] You know, it’s funny, when you walk down a city street today and you see a curb cut, you know, those little concrete ramps right at the corner of an intersection? Right. Or like when you grab a handrail in a public bathroom or you press one of those giant silver buttons to open an automatic door, there is this built-in expectation that it’s all just, I don’t know, civic engineering. [Speaker 2] Yeah. [Speaker 1] Like at some point, some benevolent city planner just looked at a blueprint, stroked their chin and went, hey, let’s make this easier for everybody. Right. We tend to view the accessible world around us as this byproduct of natural passive progress. Yeah, exactly. Like it’s just the inevitable march of modern architecture getting, you know, kinder over time. Kinder, right. It feels clean, it feels structural. But then, and this is what we’re getting into today, you start actually digging into the history of disability rights in this country, and suddenly that little concrete curb cut isn’t just concrete anymore. [Speaker 2] No, not at all. [Speaker 1] It is a battle scar. Like when you look at the accessible landscape, you are looking at a world that was absolutely not given to anyone by benevolent lawmakers. Yeah. It was taken, demanded, and fought for in ways that are honestly jaw-dropping. It is the absolute definition of a hard-won revolution, and it completely shatters that illusion of passive progress, you know? Yeah. You realize very quickly that accessibility is not a charity project. It is a profound matter of civil rights. Which is exactly what we are getting into today. Welcome to the Deep Dive. We are honoring Disability Pride Month, which is celebrated every July to mark the passage of the Americans with Disabilities Act back on July 26, 1990. It’s such an important milestone. It really is. And for you listening, our mission today is to take you on a narrative journey. We’ve got an incredible stack of sources in front of us, ranging from a deeply detailed historical report from the U.S. National Park Service to several contemporary advocacy briefs that lay out the modern landscape of the movement today. And as we go through these sources, the core theme that just emerges over and over again is power. Yes. Power. This is a history of fierce self-worth, community, and raw political power. I want to be really clear right up front. It is not a story about pity. It has never been about pity. Okay. Let’s unpack this. Because to understand where the disability rights movement is today, and to understand the pride we see every July, you can’t just start with the ADA in 1990. Right. That’s too late in the timeline. Exactly. You have to look at the radical lengths people had to go to just to force the government to enforce the laws that had already passed. And that takes us back to 1973. Yeah. The Rehabilitation Act of 1973. Specifically, there’s this tiny provision buried inside it called Section 504. Right. Our sources point out that Section 504 is incredibly brief. It’s less than 100 words long. Which is wild for a piece of legislation that important. It really is. It essentially just mirrored the Civil Rights Act of 1964, stating that no qualified individual with a disability could be excluded from or discriminated against in any program receiving federal funds. So on paper, less than 100 words officially recognized disability as a civil rights category for the very first time. On paper, yes. But here is the critical gap between legislation and reality. A law is entirely useless if there are no practical regulations written to enforce it. Oh, right. Because how do you enforce a vague idea? Exactly. You can say no discrimination all you want, but what does that actually mean for a university or a federally funded hospital? Right. The logistics of it. Yeah. And the organizations that would have to comply with this were pushing back hard. They didn’t want to spend the money to retrofit buildings with ramps or provide braille materials or hire sign language interpreters. They argued the cost of compliance was just unreasonable. So wait, they just stalled. Like for years, the government passes a civil rights law and then just refuses to write the instructions on how to actually follow it. Literally for years. It gets kicked down the road from one administration to the next. And by 1977, it lands on the desk of Joseph Califano. He was President Jimmy Carter’s Secretary of Health, Education and Welfare, HUW. And Califano refused to sign the regulations. He was actively meeting with lobbyists who wanted to water the rules down. Wow. So the disability community, organized by a group called the American Coalition of Citizens with Disabilities, they give Califano a massive ultimatum, right? They do. They say, sign the regulations unaltered by April or resign. And he obviously doesn’t either. Yeah. And that triggers April 5, 1977. The 504 sit-ins. Yeah. Protests erupt at 10 regional HUW offices across the country. But the one that fundamentally changed history happened in San Francisco at the federal building at 50 UN Plaza. And this is where the story gets so intense. It really does. Activists led by these brilliant organizers like Judy Heumann and Kitty Cohn, they marched right into the building, occupied the offices and simply refused to leave. And I want to emphasize this for everyone listening. This wasn’t, you know, a weekend protest where people hold signs for a few hours and then go home for dinner. It lasted 26 days. To this day, it remains the longest peaceful occupation of a U.S. federal building in history. But I have a genuine question about the mechanics of this, because I am just marveling at the sheer logistics. Oh, the logistics were a nightmare. Right. How do people with severe, complex medical needs survive an occupation in a hostile building? Because the federal government didn’t just let them stay. The sources note the police cut off the hot water and the phone lines almost immediately to try and freeze them out. It’s an incredible logistical feat, and it came down to pure, unadulterated solidarity and ingenuity. You had people sleeping on hard office floors, which meant risking severe, life-threatening bed sores. Oh, man. You had people choosing to forgo their personal aids and vital medical equipment from home. And to keep critical medications cold when they had no access to a kitchen or running electricity in certain parts of the building, Katie Cohn literally built a makeshift refrigerator. Wait, how? She taped a cardboard office box around a running window air conditioning unit. That is amazing. There’s a true MacGyver stuff right there. Yeah, exactly. And what about the cut phone lines? How did they communicate with the outside world if the police cut them off? Deaf protesters went to the high windows of the federal building and used sign language to communicate entirely in the open with supporters standing down on the street below. Oh, wow. Yeah, they bypassed the phone system entirely. See, that is the defining moment for me in these historical documents, the cross-movement solidarity, because they weren’t in that building alone. No, not at all. The broader civil rights community recognized the shared struggle and showed up in a massive way. The Black Panther Party, recognizing the intersection of systemic oppression, they delivered hot meals to the protesters every single day of the occupation. It’s such a powerful image of mutual aid. It really is. And the International Association of Machinists Union, the IAM, they stepped in when a delegation of these protesters eventually flew to Washington, D.C. to pressure the White House directly. Right, because once the organizers flew to D.C., they hit a massive physical barrier. There was zero accessible public transit for wheelchair users in the Capitol. Zero. Yeah. The buses didn’t have lifts. The subway wasn’t accessible. So the Machinists Union rented a massive box truck. [Speaker 2] Yeah. [Speaker 1] And they transported wheelchair users around Washington in the dark in the back of this truck just so they could physically corner politicians in their offices. What’s fascinating here is the sociological shift that happened inside that San Francisco building over those 26 days, because up until this point, disabled people were often incredibly isolated from one another due to the very lack of accessibility they were fighting against. Oh, that makes sense. Right? Someone who is blind and someone who uses a wheelchair might face completely different daily barriers. They rarely had accessible public spaces where they could physically gather, share ideas and organize. But suddenly you have this incredibly diverse cross-section of humanity locked inside a federal building together for nearly a month. Exactly. This isolated community was forced into a shared space. They shared stories. They managed each other’s complex medical needs. And in doing so, they forged a unified, cross-disability political bloc. They found their common ground. They stopped being fragmented subgroups and became a singular, undeniable force. They realized their struggles shared the exact same root cause, which is systemic ableism. And it worked. The national media caught wind. The pressure became insurmountable. And on April 28, 1977, Joseph Califano gave in and signed the regulations completely unchanged. It’s a monumental victory. Yeah. But as we see in the sources, 504 had a massive limitation. It did. It only protected people in federally funded programs. So if you wanted to go to the post office, you were fine. But if you wanted to eat at a private restaurant or work at a private company or just ride a private bus, it was perfectly legal for them to tell you no or simply have a flight of stairs you couldn’t climb. Yeah. A huge loophole. To protect disabled people in the private sector, they needed a new law, the Americans with Disabilities Act. And that explains why by 1990, history is basically repeating itself. Right. The ADA is stalled in congressional committees. Private business interests are complaining about the hypothetical cost of building ramps and widening doors. The legislation is just stuck. So the community mobilizes again. March 12, 1990. The Capitol crawl. Gives me chills just thinking about it. Over a thousand protesters march on the U.S. Capitol. And this is the visual that I think perfectly encapsulates the physical toll of this fight. Over 60 activists get to the bottom of the Capitol steps. All 83 stone steps. And they abandon their wheelchairs. Yeah. They leave their crutches at the bottom. And they begin to physically pull their bodies up the steps, crawling to the doors of Congress. It was a visceral, undeniable demonstration of the barriers that society had artificially placed in front of them. For decades, society had hidden disabled people away in institutions. Out of sight, out of mind. Exactly. This action forced lawmakers and the cameras of the world to watch the sheer physical toll of ableism in broad daylight. You couldn’t look away from the fact that the literal seat of American democracy was physically inaccessible to millions of its citizens. And among them was an eight-year-old girl named Jennifer Keelan Chaffins, who had cerebral palsy. She pulled herself up those stone steps alongside the adults. And there’s this famous, just gut-wrenching quote from her where she declares, I’ll take all night if I have to. It broke the legislative logjam. It provided the indisputable moral clarity needed to push the bill forward. And just a few months later, on July 26, President George H.W. Bush signed the ADA into law. Here’s where it gets really interesting, though. OK. We’ve spent this first half of the conversation talking about physical barriers. The steps to a building. The width of a door. The curb cut. But the disability rights movement didn’t stop in 1990. The movement evolved. Because what happens when the barriers and the disabilities themselves aren’t immediately visible to the eye? This is arguably the most significant evolution of modern disability advocacy. Yeah. The original legal framework, like the ADA, was largely built around physical and apparent disabilities because those were the barriers that could be, well, measured with a tape measure. Right. But a massive, massive portion of the community lives with non-apparent conditions. We’re talking autoimmune diseases, chronic pain, mental health conditions, neurodivergence. Right. And as Disability Pride Month really started gaining global momentum around 2015, which was the 25th anniversary of the ADA, you see this distinct shift in the advocacy briefs. Very much so. The focus really began to expand to encompass these non-apparent disabilities, which is perfectly captured by the history of the Disability Pride Flag. The flag is such a brilliant case study in how this community operates. It was originally created in 2019 by a disabled artist named Anne McGill. It featured bright, zigzagging lightning bolt stripes over a dark background. But the version of the flag you see today is actually redesigned from 2021. And the reason it was redesigned is so perfectly aligned with everything we’re talking about. It’s the ultimate lesson in meta-accessibility. The 2019 flag looks striking, but the community quickly realized that the zigzag pattern, combined with the high contrast neon colors, was actually causing visual sensory trigger. Yeah. As people scrolled past it on social media, the design was inducing migraines and triggering symptoms for people with epilepsy or visual processing disorders. So a flag meant to symbolize the disabled community was physically inaccessible to a portion of the people it was supposed to represent. So McGill didn’t get defensive. She listened to the community, collaborated with folks who have visual processing disorders, and completely redesigned it in 2021. She straightened the stripes into a diagonal band, softened the contrast, and reordered the colors so they would be red-green colorblind friendly. Which is just fantastic. And then she placed the design in the public domain, meaning anyone can use it freely forever. And the visual language of that flag is incredibly deliberate. It doesn’t just lump everyone together into one homogenous group. Right. It intentionally maps out the distinct experiences within the community. The background of the flag is a faded charcoal or black, which represents mourning. It’s a somber acknowledgement of the victims of ableist violence, abuse, and systemic neglect. It grounds the pride in the reality of the struggle. And then cutting across that dark background is a diagonal band of five colors, representing how disabled people cut across all demographics, borders, and identities. Yes. Like you have the white stripe, which specifically represents non-visible, invisible, and undiagnosed disabilities, people fighting battles no one else can see. And the gold stripe represents neurodivergence and cognitive disabilities, like autism and ADHD. The blue stripe represents mental health and psychiatric conditions. The red stripe is for physical disabilities. And the green stripe represents sensory processing, as well as the deaf and blind communities. Exactly. By separating the colors but keeping them united on one flag, it acknowledges that an autistic person’s daily needs might look completely different from a wheelchair user’s needs. But their fight for bodily autonomy and societal accommodation is the exact same fight. If we connect this to the bigger picture, we are moving from the macro symbolism of a flag down to the micro daily reality of living with these conditions. Because it’s one thing to have a white stripe on a piece of cloth. It’s another thing entirely to try and survive a random Tuesday when your immune system is attacking your own body. But everyone at the office thinks you look completely fine. And this is where the sources dive into something called spoon theory. Yeah, coined by Christine Miserandino back in 2003. She was sitting at a diner trying to explain to a friend what the daily reality of living with lupus, which is an invisible chronic illness, actually felt like. The best way I can describe spoon theory for you listening is to think of it as a strict, non-negotiable energy budget. A good way to frame it. If you are a non-disabled person, you generally wake up with a seemingly infinite or at least highly renewable supply of energy. You don’t have to consciously budget the physical and cognitive energy it takes to get out of bed and take a shower. You just do it. But if you have a chronic illness or a non-visible disability, if you are a spoonie, as the community calls it, you start every single day with a finite number of spoons. Let’s say you get 12 spoons for the whole day. And the crucial part of the theory is that every single action costs a spoon. Taking that shower, that costs a spoon. Commuting on a crowded subway. That might cost three spoons because of the sensory overload and the physical strain of standing. Having to explain your invisible condition to a skeptical co-worker who wonders why you’re taking a break, that’s another two spoons drained just from the emotional labor. So before you’ve even sat down at your desk at 9am, you might only have six spoons left to get through the entire rest of your day, including making dinner and interacting with your family. It requires this intense, relentless pacing and rebudgeting. And our sources note this is a massive cultural shift right now, especially with the influx of people dealing with long COVID, who are suddenly grieving their previous energy levels and learning how to operate on a stripped spoon budget for the first time in their lives. Now imagine taking someone who is already carefully rationing their spoons and putting them into one of the most high-stress, unpredictable environments imaginable in an airport. Oh, it’s a nightmare scenario. Truly. Imagine navigating the sensory nightmare of TSA, gate changes and flight delays when you are critically low on spoons, and your disability is completely invisible to the airport staff rushing you along. You might desperately need a bit of extra time to board, or you might need clear verbal instructions because of cognitive overload, but you don’t look disabled to the gate agent. This specific friction point is where we see practical solutions emerging, like the Hidden Disability Sunflower Lanyard. It was created in 2016 by the accessibility team at Gatwick Airport in the UK. It’s a simple green lanyard with yellow sunflowers. And the mechanics of it are brilliant. It acts as a discrete signal to trained transit and airport staff that the person wearing it has a non-visible condition. Right. It doesn’t mean the person wants to be patronized or treated like a child. It just signals that they might need extra processing time, a bit of physical space, or a slightly different approach. And what makes the Gatwick model work is the training. Airports and businesses actually pay for training modules so their staff understand the behavioral cues associated with the lanyard. Importantly, for the user, it operates entirely on their honor system. You don’t have to show invasive medical paperwork to a barista or a TSA agent to get one. But reading through the briefs, I found myself wondering, doesn’t a bright green lanyard with yellow flowers kind of defeat the purpose of being discrete? Like it might signal the staff, but it also signals everyone else in the terminal. That is a very real concern, often referred to as lanyard overload. A lot of people do not want to broadcast their vulnerability to an entire terminal of strangers, especially if they are traveling alone. Yeah, that makes a lot of sense. So the system has adapted. You can use enamel lapel pins or discrete pocket cards that you just quietly hand directly to an agent. You can also bypass the physical markers entirely on the administrative side. How does that work? You can register with TSA Cares 72 hours prior to your flight to get a passenger support specialist to guide you. Or you can add special service request codes like the DPNA code, which stands for Disabled Passenger Needing Assistance directly to your flight itinerary under the Air Carrier Access Act. The system is designed to give you options based on your comfort level. These tools are incredible, but they reveal a really fragile underlying mechanic. They rely heavily on public trust. An honor system only works if the public honors it. And right now that trust is actively fraying. Which brings us to the very real systemic crackdown we are seeing right now on pre-boarding protocols. This part of the research genuinely fired me up. I don’t blame you. Because we are seeing airlines enforce strict one-companion rules, forcing people to check in at the gate desk to verbally justify their need to pre-board or outright interrogating passengers. And the reason they are doing this is entirely rooted in viral social media trends. It’s incredibly frustrating. You have influencers and able-bodied people posting travel hacks on TikTok bragging about how to ask for a wheelchair or claim an invisible disability just to board early and secure overhead bin space. It is the commodification of accessibility. It fundamentally misunderstands that accommodations are not VIP perks or travel hacks. They are equalizers necessary for basic participation. And the result is what I look at as a literal spoon tax. Because able-bodied people misuse this system for convenience, the airlines get skeptical of everyone. So now a traveler who legitimately has an invisible condition, who is already running on a deficit of energy, is hit with this extra tax. Yes. They are forced to constantly self-advocate to perform their disability and to prove their medical reality to a gate agent who is looking at them with total skepticism. It forces disabled people to bear the burden of proof in a public, often humiliating way, just to access the basic accommodations they are linkedly entitled to. This raises an important question. If you are listening to this and you want to help, how do you actually advocate without misusing these delicate accessibility systems? How do you become a true ally rather than just taking up space? The answer from the advocacy briefs is pretty clear. You focus on the systemic level. You support the organizations that are doing the heavy lifting so that individuals don’t have to spend their daily spoons fighting gate agents. Yeah. But it helps to understand how these different groups operate because they tackle the problem from completely different angles. Exactly. For instance, if you want to change the culture around non-visible conditions, you look at groups like the Invisible Disabilities Association, the IDA. Their primary mechanism is educational lifting. Kind of. They run campaigns to normalize invisible conditions so that individuals don’t have to constantly explain themselves to skeptical employers or family members. And if you are looking at how to build actual political power, you have the AAPD, the American Association of People with Disabilities. Their methodology is about civic engagement. They focus on turning the disability community into a cohesive voting bloc, lobbying lawmakers in Washington to ensure that accessibility is written into federal policy, not just left to the goodwill of corporations. Then you have groups fundamentally changing the philosophy of care, like ASAN, the Autistic Self-Advocacy Network. What makes ASAN so vital is their operating model. It is run entirely by and for autistic individuals. Which wasn’t always the norm, right? Not at all. For decades, autism advocacy was dominated by groups looking for a cure or focusing on behavioral therapies that forced autistic people to mask their traits. ASAN flipped that entirely. Their methodology is self-determination, advocating for societal accommodation of neurodivergence, rather than trying to fix the person. And when policy and education aren’t enough, you need legal teeth. That’s where the NDRN, the National Disability Rights Network, comes in. They provide actual legal assistance. They are the ones who will step in and sue a state agency or a corporation on behalf of individuals when those civil rights laws we talked about earlier are violated. It is an entire ecosystem of advocacy, working simultaneously on education, policy, self-determination, and legal enforcement. So what does this all mean? We’ve covered a massive amount of ground today. We really have. We started in 1977 with Kitty Cone taping together a cardboard refrigerator and Judy Heumann sleeping on the floor of a federal office building just to force the government to acknowledge their basic humanity. [Speaker 2] Yeah. [Speaker 1] We saw the undeniable physical toll of the 1990 Capitol Crawl. And we’ve tracked how that radical spirit has evolved to protect the invisible, the neurodivergent, and the chronically ill today, demanding that they be believed and accommodated without having to pay a daily spoon tax. It’s a history that proves the world can be reshaped when a community refuses to be ignored. But as we wrap up, I want to leave you with a thought about where this fight goes next. I’ll go. We spend a lot of time talking about concrete curb cuts and physical ramps, but right now we are building an entirely new world from scratch, the digital world. As we construct the metaverse, as we integrate artificial intelligence into hiring algorithms, and as virtual reality becomes the new workplace, we have to ask, who is writing the pad? Are we accidentally building digital stairs? That is such a good point. Because if we don’t code accessibility into the foundation of these new frontiers right now, we’re going to need a digital Capitol Crawl tomorrow. The frontier of disability rights isn’t just in physical buildings anymore. It’s in the architecture of our technology. And it’s up to all of us to ensure the future is built with the doors wide open. (Transcribed by TurboScribe. 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