Rest as Resistance: How Disabled Advocates Fight for Change While Caring for Themselves

A digital illustration in a comic book style depicts a young person with curly hair resting on a cozy couch, wearing a hoodie and sweatpants. Their eyes are closed, and they are holding a book in their lap, with a laptop open beside them. A service dog is curled up and sleeping next to them. The background features a bookshelf filled with advocacy and activism-related books and posters. bA speech bubble above the person reads, "You deserve rest too."

I’ve been absent from LinkedIn for a few weeks. Not because I wanted to be, but because chronic pain has completely sidelined me. And let’s be honest—the world isn’t exactly making it easy to step away. Every time I glance at the news, it feels like everything is on fire—politically, socially, literally. But here’s the thing: even in times like these, we have to put on our own oxygen masks first.

The reality of chronic pain (or any chronic condition) is that it doesn’t just ask for your attention—it demands it. It forces you to recalibrate, to step back, to turn down opportunities and outings that mean everything to you. And that’s been my reality lately. My pain levels have been high, my capacity has been low, and that means my public advocacy has slowed. But that doesn’t mean the work ever truly stops.

Because even when we aren’t writing, speaking, or showing up in visible ways, we are still advocating in our daily lives. We advocate in doctor’s offices. In the ways we navigate inaccessible systems. In the way we care for ourselves when society tells us to just push through. And yes, sometimes the most radical thing we can do is rest.

I’ve been thinking a lot about what it means to be “silent” in moments of crisis. How absence is often misread as disengagement when, in reality, it’s survival. My absence hasn’t been because I don’t care—it’s been because I’ve been managing my health. And right now, that balance between chronic pain, advocacy, and the rest of life feels like an endless, spinning carousel.

I don’t have an easy answer. But I do know this: rest is not a retreat. And we do not owe anyone our suffering to prove our commitment to justice. I’ll keep showing up the best I can, when I can. And if you’re in a season of needing rest too, know that you’re not alone.

The Midnight Deadline That Could Change the Federal Workforce Forever

Demonstrators rally during a protest against U.S. President Donald Trump and the actions he has taken in the first weeks of his presidency, outside of the Department of Labor (not pictured) in Washington, U.S., February 5, 2025.

As Tom Petty famously said, "You can stand me up at the gates of hell, I won't back down."

This morning, like every other federal employee, I received another email reminding me that time is almost up. The so-called "Fork in the Road" buyout offer—a forced choice that feels anything but voluntary—expires tonight.

This isn’t just another bureaucratic reshuffling. It’s an existential crisis for public service.

For more than a decade, I have proudly served as a federal employee, working across multiple administrations, and several agencies. I've advocated for healthcare with the U.S. Department of Health and Human Services (HHS), promoted innovation at the USPTO, and today I fight for the American worker at the U.S. Department of Labor. Now, that career—like those of thousands of my colleagues—hangs in the balance, not because of performance or budget constraints, but due to a politically motivated purge of the federal workforce.

And I’m not alone.

“If you have to send us 10 emails saying this is totally not a scam… then it’s probably a scam,” David Casserly told POLITICO.

Federal employees across agencies have voiced our concerns: we do not trust this offer.

There is no legal certainty that severance will be paid past March 14, when current government funding expires. Meanwhile, those who refuse the buyout face an implicit threat of future layoffs. Messaging from U.S. Office of Personnel Management (OPM) has been inconsistent, shifting policies and timelines in ways that appear designed to create confusion.

The irony? The very people being targeted for removal are the backbone of government efficiency.

Career civil servants do not take these jobs for money or prestige. We do this work because we believe in it. We are committed to upholding the rule of law, ensuring that government services run smoothly, and protecting the most vulnerable members of our society. We are the employees processing Social Security claims, enforcing labor laws, and ensuring accessibility in federal programs. Yet, we are now treated as obstacles to be removed.

So, what happens tomorrow?

For those of us refusing the buyout, we brace for retaliation. The Department of Government Efficiency met with Labor Department leadership yesterday, and the message was clear: this is only the beginning. We do not know if access to federal systems will be revoked overnight. We do not know if mass terminations are imminent. What we do know is that this administration is determined to eliminate career public servants, and it is not being subtle about it.

But we are still here. And we are not backing down.

If you are a federal worker—or if you know one—check in, reach out, and offer support. No matter what happens after midnight, we must stand together.

Uber’s Service Dog Policy Update: Progress or Just PR?

Uber logo displayed on a modern, abstract background featuring curved shapes in black, blue, and mint green.

I’ve spent a lifetime advocating for disability rights, fighting for equity, and pushing companies to make accessibility a reality—I’ve seen firsthand how corporations talk a big game about inclusion but fail in practice. That’s why Uber’s recent policy update on service dogs caught my attention.

Uber has always been required by law to allow service dogs, yet enforcement has been inconsistent at best. While matched with Canine Companions® Pico, I documented hundreds of refusals on Twitter/X, confronted drivers, filed complaints—and all too often, the most Uber would do was ensure I wasn’t matched with that driver again. Consequences were minimal, and riders like me bore the burden of proving discrimination over and over again.

Now, Uber is rolling out a feature that allows riders to self-identify as service dog handlers. If a driver cancels after being notified, they receive a warning reminding them that refusal is illegal. “Any driver who violates this policy may permanently lose access to the platform,” says Uber’s Chris Yoon, as quoted in The Verge. That sounds good, right? Except I’ve been here before. The key word is 'may'. Will drivers actually be held accountable, or will this be another slap on the wrist?

Uber’s history gives me reason to doubt. The system still leaves room for discrimination. Drivers can cancel rides under false pretenses—claiming they couldn’t find the rider, going offline, or making other excuses to avoid accountability. I and many others have seen this playbook. Meanwhile, service dog handlers are forced to navigate awkward confrontations and potential ride denials just to get from Point A to Point B. It get's exhausting. No handler should be forced to leave their medical equipment at home to make it on time to their destination.

This new feature seems helpful, but it places even more responsibility on disabled riders to preemptively disclose our status, creating a record of our attempts to comply. But why should it be on us to reduce the risk of discrimination? Why aren’t drivers trained, vetted, and monitored more closely to prevent these issues in the first place?

To be clear, I want to believe this marks a real shift. Uber claims this feature was developed “in collaboration with leading advocacy organizations and service dog handlers.” Organizations including National Federation of the Blind, The Seeing Eye, and American Council of the Blind. That’s a step in the right direction. But my optimism is cautious. Until we see consistent enforcement—until drivers who break the law actually face removal—this is just another policy on paper, not a lived reality.

So I ask: What would true accountability look like to you? Have you faced service dog refusals in rideshare services? What changes would make a real impact?

Uber wants to make riding with a service animal easier

Accessibility at Disney: A Conversation We Need to Have

Cinderella Castle at Walt Disney World in Florida, a majestic and iconic fairytale castle with blue rooftops, golden spires, and pink and gray walls. The setting includes a clear sky and a few decorations in the foreground, emphasizing the grandeur and magical atmosphere of the castle.

Growing up in Los Angeles, some of my best childhood memories were at The Walt Disney Company parks with friends. For a little while, the challenges of living with a disability seemed to fade away. I felt free, just another kid thrilled by the magic of Disney. Sure, entering rides through the exit to skip the long lines wasn’t a perfect system—it drew attention to my differences—but it made those moments possible. I used to joke with my friends: “Want to trade disabilities for this perk?” Unsurprisingly, no one ever did. Guess the FastPass for chronic pain wasn’t worth it.

Decades later, Disney’s recent changes to its Disability Access Service and the growing shortage of Electric Conveyance Vehicles have created significant barriers, leaving many wondering if inclusivity still has a place in the magic.

For years, DAS offered a lifeline, providing virtual queues that allowed disabled guests to avoid physically taxing lines. But in 2024, new restrictions left many who had relied on the service feeling excluded. Black Enterprise Magazine reports a recent study shared with the IAAPA found nearly half of those denied DAS said they’d visit Disney parks less often; over a third said they wouldn’t return at all. A spokesperson for DAS Defenders summed it up perfectly: “The changes to DAS and the ECV shortage are creating barriers for disabled guests who simply want to enjoy the parks.”

The ECV shortage has only made things worse. Disney positioned these vehicles as an alternative to DAS, yet supply can’t keep up with demand. A photo that went viral of a sign at Magic Kingdom announcing all ECVs were sold out for the day struck a nerve. For those of us who rely on mobility aids, this isn’t just an inconvenience—it’s a dealbreaker. Imagine being told “the most magical place on Earth” has everything but a seat for you. These changes appear driven by cost-cutting rather than a genuine commitment to inclusivity.

Accessibility isn’t a bonus feature. It’s the foundation for creating spaces where everyone can participate fully. Disney has made strides in other areas, but these recent decisions cast doubt on whether they’re truly listening to their disabled guests. For a company built on the promise of magic for all, this feels like a step backward.

Still, I believe change is possible. Disney can revisit its DAS policies, ensure adequate ECV availability, and engage with disability advocates to craft a more inclusive strategy. After all, a more inclusive Disney isn’t just better for disabled guests; it’s better for everyone.

This isn’t just about Disney, though. It’s a reminder that accessibility is a collective responsibility. Whether at work, in public spaces, or at amusement parks, we all have a role to play in building a world where inclusion isn’t an afterthought but a given.

The Two Faces of Language: Empowerment vs. Weaponization

A playground featuring a row of swing sets, with one adaptive swing in the foreground designed for children with disabilities. The swing is green with a yellow harness, contrasting with the standard black swings in the background. The scene includes a climbing structure, benches, and a large tree providing shade. A brick school building is visible in the background, and the area is surrounded by a chain-link fence. The muted lighting suggests an overcast or hazy day.

Yesterday I wrote about how reclaiming slurs like “cripple” or “spaz” has been a method for me of retaking control — words that once pierced can become emblems of resistance and empowerment. But today, I’m thinking about an uglier side of language: when those very words are intentionally used as weapons.

What we’re experiencing is a revival of slurs like the R-word not as ignorant throwbacks to a bygone era, but as instruments of malice. This is not the relaxed slip of someone who doesn’t know; this is on purpose. Public figures like Elon Musk have tossed the R-word into online exchanges as if it were nothing, fully aware of the reaction it inspires. It is part of a broader trend in which words are wielded to demean and dehumanize, particularly in digital spaces. As Miles Klee writes for Rolling Stone, "Today’s trolls use it because it crosses a contested boundary, as a deliberate (if uninspired) provocation." Trolls don’t use these words because they don’t know what harm they might do — they use them because of what threat they pose.

Here’s the thing: Intent and context matter. I reclaim a word within trusted circles, where it is understood as a shared joke, a way to turn pain into power. But when one person throws the R-word at another person, it’s intended as a hurtful attack. It’s not reclaiming; it’s entrenching ableist stereotypes, used mainly against oppressed classes to shut them up and push them aside. The contrast couldn’t be sharper.

This goes beyond words. It’s about the degradation of empathy. When words like the R-word are used, they don’t just hurt people in the moment — they remind people with disabilities that society still considers them “less than.” That isolation can become a far deeper wound.

But this is where we can change the narrative. Reclaiming words is one way to resist, but it’s not the only way. When we see hate speech, we need to call it out; we need to hold the platforms accountable; and we need to create environments where we can all feel safe to participate. This isn’t about being politically correct — it’s about human decency.

I still believe in the power of words to connect and to heal. I’ve witnessed it in my own journey, reframing constructive criticism into something enlightening. But I’ve also seen the destruction they can cause when they are used maliciously. So how do we know where the line is? How do we take back language while resisting weaponization of language? I’d really like to hear what you think. Have you felt the sting of hurtful words? Or how they managed to turn them into something meaningful? Let's continue the conversation.

The R-Word’s Comeback Is a Grim Sign of Our Political Moment

Reclaiming Disability Language: Empowerment, Humor, and Advocacy

A conceptual image of a large pane of shattered glass with the words "spaz," "special," and "dumb" etched into its surface. A bold red prohibition circle with a diagonal line crosses over the words, symbolizing rejection of harmful language. Cracks radiate outward from the center of the glass, emphasizing the fragility and breaking of outdated, offensive terms. The background is a gradient of teal and blue, adding depth and contrast to the image.

Words. They’re sharp, heavy, and at times, loaded. But they’re also fluid, malleable, and, most importantly, ours to shape. I’ve been thinking a lot lately about the language surrounding disability and how it’s evolved—how words that once stung can now feel like a badge of defiant pride when reclaimed.

A recent TIME piece by Angela Haupt explored how to respond when someone says something offensive about disability, emphasizing the importance of educating others without assuming malice. This idea resonated with me deeply, but I kept circling back to a less discussed angle: reclaiming the very words that have historically marginalized us.

I’ve heard my fair share of slurs: cripple, spaz, retard. As a kid, these words cut deep. But as an adult, I’ve found joy—and, dare I say, humor—in reclaiming them. These words only hold the power we assign them, and I choose to wield that power on my terms.

For example, my close friends often call me “Broken Kid” or “Spaz” endearingly. It's not mockery; it’s camaraderie. “Don’t forget your broken kid card for parking,” they’ll say with a laugh. And yes, it’s hilarious to watch well-meaning bystanders recoil in horror: “You shouldn’t say that!” or “You shouldn’t refer to yourself that way.” Their shock, while understandable, underscores the power of reclaiming language. For me, humor is not only healing—it’s a form of activism.

It’s crucial to acknowledge that not every disabled person feels the same. As Katy Neas of The Arc of the United States pointed out, “So much of what we’re seeing is behavior grounded in either fear, ignorance, or the normalization of incivility.” Some prefer to challenge offensive language directly, turning these moments into educational opportunities. Others disengage entirely, protecting their peace.

Both approaches are valid. Disability is not a monolith. But for those like me, reclaiming words is about taking back agency. It’s about laughing in the face of stigma. And sometimes, it’s about asking the cheeky, yet pointed question:
“Can I ask why you think that’s funny?” (Thanks for the tip, Jennifer Gasner!)

That said, humor doesn’t erase the very real battles we face for access, opportunity, and equity. I don’t overlook the damage careless language can do, especially when wielded maliciously. But I choose to find the humor where I can, saving my energy for bigger fights. As Lachi ♫, a legally blind performer and advocate, wisely said, “We win when we include.” I’d add: We win when we laugh—on our terms.

This approach won’t resonate with everyone, and that’s okay. Reclaiming language is deeply personal. But for me, it’s a way to strip harmful words of their venom and inject them with power, resilience, and a healthy dose of comedy.

Do you find empowerment in reclaiming words, or do you see language differently?

Sebastian Stan’s Call to Normalize Disability: Hollywood’ Role in Cultural Change

Last night, Sebastian Stan stood on the Golden Globes stage and delivered an acceptance speech that was equal parts gratitude and a societal call for more disability inclusion in storytelling saying, “Our ignorance and discomfort around disability and disfigurement has to end. We have to normalize it and continue to expose ourselves and our children to it. [We should] encourage acceptance.”

We’ve come a long way in some ways, but the reality is that we still have miles to go. Disability is often treated as "other," whether it’s the barriers we face in accessing physical spaces, the battles we fight for workplace accommodations, or the simple dignity of being included in the stories society chooses to tell.

A Different Man brings that reality to life. It’s not just a film about disability—it’s a film with disabled voices at its core. This matters. Representation is the difference between being seen and being invisible.

And yet, disability remains woefully underrepresented. According to a 2022 GLAAD report, less than 4% of major studio films included disabled characters—and even fewer were played by actors with disabilities. Meanwhile, 20% of the population in the U.S. identifies as disabled. That disconnect doesn’t just hurt those of us in the disability community; it limits society as a whole. When stories exclude disability, they fail to reflect the full spectrum of human experience.

This isn’t just about Hollywood. It’s about workplaces that still treat accommodations like favors instead of rights. It’s about public spaces designed without us in mind. It’s about a culture that sees disability as something to overcome, rather than simply as part of life. As Stan put it, “These films are real and they’re necessary, and we can’t be afraid and look away.” That sentiment doesn’t just apply to film—it’s a challenge to all of us.

Disability will likely touch each of us, directly or indirectly, at some point in our lives. But we shouldn’t care about disability only because it might one day be our story. We should care because these stories are real, human, and powerful. They deserve to be told—not to inspire, but to be part of the fabric of who we are as a society.

The FTC’s $1M Wake-Up Call to accessiBe: Why Accessibility Overlays Are Failing Us

A colorful and abstract digital artwork depicting a judge's gavel. The gavel is stylized with splashes of vibrant paint in shades of yellow, green, blue, purple, orange, and black, creating a dynamic, graffiti-like effect. The background is a chaotic blend of splattered colors, giving the image an energetic and bold appearance

As someone who uses assistive technology on a daily basis, I understand the value of true accessibility. Overlays purport to perform magic, but instead simply render many websites unusable, particularly for people with screen readers or those using other assistive devices. That’s why the recent $1 million Federal Trade Commission fine against accessiBe is not just a headline — it’s a landmark moment for digital accessibility.

The Federal Trade Commission revealed accessiBe’s deceptive practices, which included paying reviewers to talk about its products. Samuel A.A. Levine, the director of the F.T.C.’s Bureau of Consumer Protection, said in the statement, “Companies seeking assistance to make their websites [accessibility] compliant need to be able to trust that products do what they promise.” When they fail to do so, everyone loses — and so does the disability community.

Advocacy groups have been ringing the alarm for years. National Federation of the Blind condemned accessiBe’s business practices as “disrespectful and misleading” and more than 400 accessibility advocates signed an open letter imploring businesses to abandon automated overlays. And the risks for companies? Huge. In 2021, over 400 organizations utilizing accessibility widgets were sued over non-compliance with accessibility standards.

This isn’t just about the failings of one company; we need to rethink our whole approach to accessibility in the digital age. You might think overlays are the solution, but the reality is, there are no shortcuts to inclusion. Real accessibility is the result of audits, user testing with people who have disabilities and compliance with WCAG standards. It’s not just about keeping away from lawsuits — it’s about building an internet that benefits everyone.

The FTC’s action should be a wake-up call. Convenience should not come at the expense of inclusion, transparency, and accountability — so it’s time for businesses to prioritize it.

FTC orders AI accessibility startup accessiBe to pay $1M for misleading advertising

Turning Frustration Into Fuel: Disability Advocacy in 2025

Portrait of Alice Wong, a disability activist and MacArthur genius, sitting outdoors surrounded by lush green foliage. She is wearing a colorful outfit, and a ventilator tube is visible at her neck. Her expression is calm and contemplative, reflecting her resilience and strength.

The world feels heavy, doesn’t it? Some days it’s hard to shake the thought that everything is unraveling. Advocacy, especially disability advocacy, can feel like shouting into the void. The uphill battle seems steeper than ever, and yet—we press on. Because we must.

Alice Wong, a luminary in disability activism, put it bluntly telling The Guardian: “Yes, life is a complete dumpster fire, but I am reminded that I am not alone.” Her words hit home. Advocacy isn’t a solitary act. It’s a collective one, fueled by the connections we forge and the communities we build. It’s messy. It’s relentless. But it’s also transformative.

Anger? It’s a battery charger. Wong speaks to this beautifully: frustration doesn’t have to drain us—it can energize us. When progress feels stagnant or outright regressive, channeling that fury into action becomes a radical act of hope. Advocacy, after all, isn’t just about surviving the chaos; it’s about rewriting the rules that made survival so hard in the first place.

And yet, advocacy isn’t solely struggle. That’s the trap, isn’t it? To define our lives by hardship alone. Wong challenges this, insisting that the disabled experience is nuanced—full of abundance, love, and joy. “One principle of disability justice,” she reminds us, “is recognizing the inherent value and wholeness of people regardless of their ability to produce.”

Pause for a moment. Let that sink in. A world that values you—not for what you can give, but simply because you exist. It’s a radical notion in a society obsessed with output and efficiency. But that’s the heart of disability justice. It’s about dismantling systems that devalue lives and building frameworks that affirm them.

Of course, it’s not easy. Advocacy is never linear. There are setbacks and moments when the weight feels unbearable. But even then, there’s power in reframing the narrative. Wong’s love of science fiction offers a powerful metaphor: infinite possibilities. Speculative fiction invites us to dream boldly, to imagine futures where inclusion isn’t aspirational—it’s foundational.

So, here we are. 2025. The world may still feel bleak, but our voices—your voice—matter. They ripple outward, shifting conversations, policies, and perceptions. Advocacy isn’t a sprint; it’s a marathon. And while the finish line feels far off, every step matters.

Take your frustration. Take your anger. Take your hope. Turn them into fuel. Together, we’re building something extraordinary: a future where our community doesn’t just survive, but thrives.

MacArthur genius Alice Wong on resistance in the new year: ‘Life is a dumpster fire, but I’m not alone’

Why Disability Representation in Media Is More Than Just a Moral Imperative

Marissa Bode as Nessarose in Wicked.

As we close out 2024, I can’t stop thinking about Wicked. Not just the dazzling sets, the soaring music, or the star-studded cast. No, what lingers most is Marissa Bode—her powerful, unapologetic portrayal of Nessarose. Here was a wheelchair user, playing a wheelchair user, in one of the year’s most anticipated films. Groundbreaking, yes. But it wasn’t without its challenges.

Marissa Bode didn’t just act; she fought. When trolls flooded social media with ableist remarks, mocking her disability, she spoke out. “Disability is not fictional,” she said. Simple words. Monumental truth. And yet, the backlash she faced underscores a harsh reality: representation is still fragile, progress still precarious .

Why does this matter? Consider the numbers. In the U.S., disabled people make up 28.7% of the viewing audience. Globally, we’re talking about over 1 billion people. Yet, only 1.9% of speaking characters in the top 100 films have disabilities. That statistic hasn’t budged since 2015. Hollywood isn’t just lagging—it’s stuck .

But when representation is done right, it’s transformative. Take CODA. Its portrayal of the deaf community swept awards season, proving that diverse stories resonate deeply. Writer Siân Heder told Variety's Randee Dawn: “People can smell authenticity… Tell these stories because they’re fun, they’re entertaining—and they’re sexy.” Inclusion isn’t a risk; it’s an opportunity .

So what’s next? What do we want for 2025? I dream of a year when Marissa Bode’s story isn’t exceptional but ordinary. When disability representation doesn’t make headlines because it’s normal. When studios stop seeing accessibility as a logistical headache and start seeing it as a creative necessity.

Representation matters because it changes how society views us—disabled people. It normalizes our existence, shatters stereotypes, and inspires a generation to see themselves not as “other” but as integral to the human experience. It also matters because it’s good business. Let’s not ignore the power of a billion-person market.

But let’s be clear: representation alone won’t solve ableism. True inclusion requires more. It requires disabled voices at every level—writers, directors, crew members. It demands accessible sets, thoughtful storytelling, and a willingness to challenge the status quo. Hollywood can’t just open the door; it has to invite us in and let us stay.

As I look toward 2025, I’m optimistic but not complacent. The progress we’ve seen in 2024 with films like Wicked is encouraging, but it’s not the finish line. It’s a starting point. Let’s amplify these stories, hold gatekeepers accountable, and create a world where the next Marissa Bode doesn’t have to fight just to be seen.

Representation isn’t just about who gets to tell the story—it’s about who gets to be part of the story. Let’s make 2025 the year we get this right.