In his small town of 2,000 people, Dan Pezzetta calculates his survival. Each month brings a new set of equations: the cost of medication, the distance to specialists, the hours until the next insurance battle. 

At 25 years old, he has already hit his lifetime maximum under the Affordable Care Act. “If that gets repealed,” he tells me, “that’s going to be really difficult for me.” 

After his parents went into Medicare due to their age, Dan had to get his own insurance. The problem? He’s now engaged in a healthcare system that does not understand his condition – nor does it seem to want to. A system that will constantly discriminate against him thanks to his aortic stenosis diagnosis, that will look down on his invisible illness and disability. A system that has seen more limited progress than many people in the rare disease and disability communities would like. 

Every day, Dan weighs whether he can afford to stay alive while also trying to build a life. “I lost my early twenties to the pandemic,” he explains. “I’m supposed to be in a spot where I’m supposed to have a life, a career, and a family – but at the same time, I’m disabled and still need to worry about advocacy, defending the community, my life, my medical bills. It’s hard to balance everything going on in the world as a disabled person. It’s overwhelming to be on your own and be disabled. And the system seems designed to make it as complicated as possible.” 

The calculations Dan must make – stark, unrelenting, necessary – illuminate the hidden challenges of living with a disability in post-pandemic America and reflect a broader crisis in healthcare access that threatens millions of individuals stuck between inadequate coverage and mounting medical needs. 

But they also fuel his desire to make change in the world as an advocate, saying: “The only way you can make change in the world is to be mad and want to make change.” 

The Mathematics of Survival

Growing up in New Jersey, Dan benefited from proximity to specialized care in Philadelphia, home to one of the nation’s premier cardiology programs. “I was lucky that my state was the next one over,” he says, “because many families have to travel across the entire country for care.” 

While major metropolitan areas offer specialized treatment centers, people living in rural or less-populated regions face seemingly impossible choices. They must relocate, travel regularly, or accept potentially inadequate – or even downright dangerous, should the doctor not know the condition – local care. But the financial and emotional toll of these decisions adds another layer of stress to already challenging situations. 

This drives Dan’s desire to see the passage of the SAFE Act, legislation that would prevent insurance discrimination for out-of-state care needs. 

“This Act is vital for us to have more flexibility in where we live, in the coverage we get, and in the healthcare we deserve,” Dan stresses. “For rare conditions, seeing the right specialist can determine survival. When insurance companies restrict coverage by state lines, they’re effectively deciding who deserves care based on zip codes.” 

Unfortunately, this forces individuals and families to rely on those same terrifying calculations. Dan breaks it down: “You learn to calculate everything. Which specialist visits can wait? Which medications might be negotiable? How many hours of work do you need to cover this medical bill?” 

For some individuals with disabilities or rare conditions, they must also make decisions about their future with healthcare access in mind. “There are lots of conversations about people getting married not out of love, but out of needing benefits,” Dan shares. “Sadly, this is something that many disabled people have to do, and that worries me. I don’t want to do that but if that’s what needs to happen, it’s what needs to happen.” 

In the Wake of the Pandemic

The COVID-19 pandemic marked a turning point in public attitudes towards disability, as well as Dan’s advocacy approach. His first book Disposed discusses the ableism and challenges he experienced during this time.

But Dan wasn’t alone. Data shows increased reports of healthcare discrimination during the pandemic, alongside issues in accessing basic services and support. 

“I always wanted to engage and connect with people, even if they disagreed with me. But the pandemic really brought back the resurgence of harmful attitudes. Many people talked about protecting the sick and elderly, but that masked underlying assumptions about whose lives were considered expendable,” he says. “Now I’m more fired up and angry about the ignorance that a lot of people carry.”

The normalization of ableist language and attitudes particularly concerns him. He shares, “It’s sad when you see horrible words like the ‘r word’ being used regularly again, or the generalized attitudes of disabled people being a burden. We live in a very individualized society, which has created a lot of disdain and hate for disabled people.” 

In 2025, as we reflect on the pandemic and its continued impact on our country, we must acknowledge that this healthcare crisis exposed and exacerbated existing inequities in social support systems and healthcare access. For the disability community, it brought into sharp focus the ways in which society often treats disabled lives as less valuable. 

Education Under Fire

Beyond healthcare, Dan is deeply concerned about looming threats to educational support for students with disabilities. The potential defunding of the Department of Education, he explains, would have devastating consequences that many Americans don’t fully grasp: the loss of IEPs, a lack of funding being funneled to special education programs. 

The Department of Education’s role in funding special education is especially crucial in states with lower income levels and poor educational outcomes. Without this federal support, Dan fears that education will return to a “‘separate but equal’ environment that disabled people have been fighting against for decades.” 

These implications extend beyond the classroom. Reduced educational support often leads to diminished career opportunities, which can perpetuate cycles of poverty and healthcare insecurity. Dan sees these interconnected challenges as part of a larger system that makes it hard for people with disabilities to live safe, empowered lives. 

“Of course part of it is that I want to protect myself, my family, and my friends,” he says. Then, with conviction, he adds, “But I also want allies to get mad. Do not get complacent or think that these things are OK.” 

A Narrative of Change

One of the ways Dan gets involved in advocacy is through his writing. As I mentioned earlier, his first book focused on his experience as a young disabled adult during the coronavirus pandemic. But Dan is working on his second book, which should be published soon, about gun violence in America. 

His work takes an innovative approach to social commentary. The anthology includes 51 chapters — one for each state, plus the District of Columbia — that describes different instances of violence and how communities were affected. 

His goal with his writing is to document lived experiences, build empathy, and create accessible entry points for more nuanced policy discussions. This creative approach allows him to reach audiences who might not engage with traditional policy discussions, but are still motivated to contribute to wider-scale change. 

While his second book may not be about rare disease or disability, the topic he covered shows his deep commitment to social betterment in all communities.

Developing Community Support Networks

If you look into successful disability advocacy, you’ll see something emerge: national systems of mutual support. Advocates nationwide report developing informal networks for sharing resources, emergency support, and collective advocacy. 

While high-profile events like Rare Disease Week on Capitol Hill — an event that both Dan and I attend annually — draw attention to disability rights, sustained progress often emerges from smaller-scale efforts.

“We’ve learned that official systems won’t always protect us,” Dan explains. “Now, more than ever, we have to rely on each other. It’s that philosophy: if nobody else is going to protect us, who will? And if we’re not willing to protect ourselves, who will?” 

He leans forward and takes a breath before continuing. “We need to lift each other up: find resources, help with struggles and challenges,” he says. “There will be medical bills, or equipment insurance won’t cover. We need to provide mutual aid for each other, emotional and physical support, financial support. The best resource we have is the community around us.” 

The concept of mutual aid has become increasingly vital in the disability community. Groups like the Stimpunks Foundation aim to provide immediate support for individuals with disabilities or rare conditions, or those on the spectrum of neurodivergence.  

Beyond traditional advocacy, the move towards mutual aid represents a grassroots approach to meeting immediate needs while working toward systemic change. This determination to address both short-term needs and long-term goals characterizes much of Dan’s advocacy work.

Local Action, National Impact

We’ve seen it in social movements that ripple across the country: sometimes smaller-sized campaigns can create huge impacts beyond their immediate scope. Successfully implemented programs often become models for broader policy initiatives.

As Dan argues, “People think that advocacy and getting things done has to be done at a national level. But national change begins with local action at a state or even county level. Be the change you want to see. You can make so much more of an impact by starting on your own in a smaller space – one accessible ramp, policy change, or community program at a time.” 

Living in his small town has taught him how powerful this focused action can be. “If I want change, I can just be loud about it,” he says. “But advocacy doesn’t just start and end in one space, or at one event. You need to keep being loud.” 

For many people in the rare disease and disability communities, advocacy is often top-of-mind. Yet it can be a somewhat frightening space – people don’t know where to start, or how big of an impact they can make.

If you’re interested in advocacy but not sure what to do, Dan advocates for taking a targeted approach. Rather than spreading your efforts too thin across multiple causes, consider focusing on specific and achievable goals. 

“If you’re able to find passion and fire in something, focus on that,” Dan says. “Maybe it’s a wheelchair ramp in your community that needs to be built. Maybe it’s a piece of legislation you really want to see passed. Get that changed and done, then you can continue getting more involved elsewhere. Everyone looks at the puzzle and wants to put it together in ten seconds, but it’s going to take time. You’re going to need to put all the little pieces together.” 

Dan also recommends leaning on your friends, other community members, and organizations like the EveryLife Foundation for Rare Diseases. Despite one in every ten people having a rare condition, these conditions are often poorly understood and wholly underfunded. Participating in advocacy in these spaces can sometimes feel like you’re stuck in one place.

“That’s why you need the community. You can’t solve it alone,” Dan explains. “You’re going to need media, money, resources, tools, and to embrace the opportunities that come your way.” 

Future Visions of Disability Rights

Measuring the progression of disability rights requires a generational lens. Immediate victories undoubtedly matter and are important. But sustainable change emerges from the improvements accumulated across decades of advocacy. 

“Each generation of disabled people should face fewer barriers than the last,” Dan tells me. “We are doing this fight to make things lighter for the people who come after us. We have hardships now and they’re a pain to deal with. But if we’re enduring it and reducing the weight of discrimination for future generations, our kids and grandkids will not have to face these hardships. Of course, they’ll still have troubles. But my goal is to give a smaller punch, so to speak, to each generation.” 

As you begin your advocacy journey, should you so choose, also know that it’s okay to take a step back when you need to. “You have to know your limits, when to stop, when to rely on other people,” Dan explains. “It took me years to figure out my body and when to rest. But you need to rest, you need to be in a good place, to continue this fight.” 

And continue the fight we will: bold, brave, and together.

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Want to get involved in disability advocacy or connect with resources? Dan welcomes messages from those seeking community support and allies interested in creating change. To learn more about Dan’s work, including his books on disability experience and social issues, or to connect with him about advocacy opportunities, follow him on Instagram at Disability Rewritten.