The Advocacy Life Podcast & Blog

Tag: disability rights

  • Barriers to the Ballot

    Barriers to the Ballot

    A Community Blog

    While the integrity of our elections is a goal we can all respect, it should never come at the cost of disenfranchising a significant portion of our population. The Safeguard American Voter Eligibility (SAVE) Act (H.R. 8281) creates functional barriers that strike at the heart of our democratic principles: the idea that every voice—and every vote—matters.

    For many in the disability community, the SAVE Act introduces “limbo” in the form of administrative The Act requires documentary proof of citizenship (like a passport or birth certificate) to register to vote. Millions of Americans lack these documents readily at hand, and for those with mobility or transportation challenges, the process of obtaining them can be nearly impossible.including

    the AAPD, have noted that these requirements disproportionately impact people with disabilities, students, and low-income individuals who may not have the means to navigate complex bureaucratic systems.

    By adding these layers, the Act undermines the National Voter Registration Act (NVRA), which was designed to make it easier—not harder—for all citizens to participate in their government.Excluding a population from the polls is against the very spirit of our nation. True election integrity comes from ensuring that every eligible citizen, regardless of their physical or cognitive ability, has a clear path to the ballot box.

    More information here

    AAPD Response to the SAVE Act Center for Public Representation: The SAVE Act Will Harm People with Disabilities

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  • Dignity V. Grief

    Dignity V. Grief

    Missing two weeks of blogging and podcasting is never ideal, but I am officially back, and new content is on the way.

    An article from Disability Scoop regarding a flag flown at the US Capitol to honor a 22-year-old who tragically died at a day program hits incredibly close to home. I spent over 10 years attending a series of disability day programs. Because I have the physical ability to speak clearly, I would often find myself stepping up to be the voice for my peers who were non-verbal. When tragedies like this happen, lawmakers rush to find legislative fixes, but we need to talk about what actually works.I

    I strongly agree that more oversight is needed to protect vulnerable individuals, and we absolutely need higher standards in training our staff. However, some of the specific legislation being proposed—like mandating surveillance cameras everywhere—is deeply flawed. Cameras and surveillance systems cannot prevent tragedies.

    Not all individuals are the same, and blanketing communal spaces with constant surveillance will deny us our dignity and privacy without due process. This article hits home on a painfully personal level. During my time in the system, I attended far too many funerals for my fellow brothers and sisters from day programs and group home settings. Tragically, sometimes there is no one there at those services besides the other residents.During

    During the pandemic in 2020, so many of these individuals passed away in isolation. To the general public, they weren’t seen as people with lives, stories, and friends—they were just numbers going up on a screen.We

    We must do better to honor their lives, protect their privacy, and raise the standards of the care they receive.

    sources:

    https://share.google/EQgO4hdQdOFVkCjoT

  • Disability Tax

    Disability Tax

    For many, the American Dream is built on a foundation of opportunity and the freedom to grow. But for the one in four New Jersey residents living with a disability, that dream is often deferred by a “hidden tax” that drains both bank accounts and spirits. I am a 38-year-old advocate with a developmental disability, and while I love this country and its potential, I often feel like I am financially suffocating.

    Living with a disability means ordinary tasks—like grocery shopping or attending a doctor’s appointment—come with added economic burdens. Research shows that U.S. households with a disabled member need approximately 29% more income to maintain the same standard of living as those without. At a median income, that’s an extra $18,322 per year just to keep pace.

    • Accessible Vehicles: Often costing upwards of $60,000.
    • Power Wheelchairs: High-end, necessary chairs can cost as much as $26,000 to $50,000.

    The most frustrating barrier to financial independence isn’t just the high cost of living; it’s the outdated policy that keeps us in poverty. To maintain essential Medicaid-funded personal care, many must stay below the poverty line.

    For decades, the Supplemental Security Income (SSI) asset limits have been frozen. Since 1983, an individual is capped at $2,000 in their bank account, while a married couple is limited to $3,000. This “marriage penalty” and the inability to save for the future means we are effectively barred from the wealth-building tools—like stocks or significant savings—that other Americans rely on.

    Beyond the dollars and cents, there is a heavy “time tax.” My colleague Javier Robles, Director of Kinesiology and Health at Rutgers University, highlights how this shapes every decision.

    Whether it’s paying more for a guaranteed accessible hotel or the hours spent researching destinations only to find “accessible” promises aren’t met, the stress is constant. Javier famously recalled a trip to Italy where he had to be carried onto a boat by firefighters because the promised accessibility was non-existent.

    As Javier puts it:

    “Being disabled means that you often pay more or you do without or you miss out on a lot of things because you can’t afford them or they’re inaccessible to you.”

    We need to move beyond complex workarounds like ABLE accounts or Special Needs Trusts, which can be restrictive. True advocacy means fighting for systemic change—like raising the individual asset limit to $10,000.

    New Jersey has taken steps with updated Workability programs, but implementation remains slow. It is time to ensure that all Americans, regardless of ability, have the freedom to contribute to the economy and build a secure future. Without financial freedom, the “Land of Opportunity” remains out of reach for millions. Keep on rolling. Keep on Living.

    Sources for this blog

    How much does it cost to live with disability in NJ_Download

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  • Common Sense

    Common Sense

    Podcast Episode

    “Disability and death are the only two strategies in life.”

    In this episode of The Advocacy Life, Kevin Nuñez tackles a topic that the major news outlets are missing: The Social Security Restoration Act. Most people don’t realize that the rules governing SSI and SSDI haven’t been significantly updated since the 1970s.

    Kevin breaks down the “Common Sense” reasons why this legislation is a necessity for all Americans, regardless of political alliance. He shares personal insights into the “marriage penalty” and the “poverty trap” that prevents disabled individuals from saving money or building a life with a partner.

    Key Takeaways:

    • The Resource Gap: Why the $2,000 asset limit is outdated and counterproductive.
    • Equality in Marriage: Understanding why the current system punishes people with disabilities for getting married.
    • Beyond ABLE Accounts: Why the Serious Injury Restoration Act offers a more logical path forward than current savings tools.
    • How to Take Action: Your voice matters—learn how to tell your legislators to support this package of bills.

    Podcast transcript

    TAL S4 E8 Common senseDownload

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  • Grdianship: A Slippery Slope

    Grdianship: A Slippery Slope

    In the world of disability advocacy, we often talk about “gaps”—the moments where the system fails to catch us. Recently, New Jersey took a step to close one of those gaps. As of April 1, 2026, a new law allows families to begin the guardianship petition process six months before a child turns 18. On the surface, this is a “commonsense and compassionate” reform. It aims to eliminate the terrifying period where a young adult with medically complex needs might be left legally unprotected because of court delays.For

    For many families, this isn’t just paperwork; it’s peace of mind. We need to have a real conversation about what guardianship actually is. As someone who has lived in the “disability limbo” of society, I know that equality is about status, rights, and opportunities. While I understand that some individuals require the support of a guardian for their safety, we must admit that guardianship is a slippery slope. When we talk about guardianship,

    We are talking about the legal removal of an individual’s right to make their own choices—where to live, how to spend their money, and even who to see. It is, in many ways, a “fancy name” for a loss of independence. If we aren’t careful, we risk turning a protective measure into a permanent ceiling on a person’s potential. Every person with a disability has a “different normal,” but we all have the same fundamental human needs. My needs are different from a peer on the autism spectrum or someone with Down syndrome—not better or worse, just different.

    This is why guardianship cannot be a one-size-fits-all solution. We must prioritize supported decision-making models that allow individuals to retain their rights while receiving the help they need. Just because someone needs help balancing a checkbook doesn’t mean they shouldn’t decide who they date or where they work.The ultimate objective should always be to help the individual “flourish and be triumphant” within their community, not to isolate them behind a legal barrier. I’m just trying to leave the world a little better than I found it. This new law in New Jersey is a win for efficiency and protection, but it’s also a reminder to all of us in the community to stay vigilant. We must ensure that “easier” access to guardianship doesn’t lead to “faster” erosion of our rights. Keep on rolling, keep on living.

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  • Remembering Section 504

    Remembering Section 504

    First things first: I’m back. After taking time for reflection and renewal during the Lent season, I am energized and ready to dive back into the fight. As I shared in Confessions from Disability Limbo, life is a series of “limbo” moments, but we don’t have to stay stuck. We move forward.

    Today, we need to talk about the bedrock of our rights. While many know the Americans with Disabilities Act (ADA), we cannot forget its predecessor: Section 504 of the Rehabilitation Act of 1973.

    Section 504 was the first federal civil rights protection for us. It essentially says that if an entity gets federal money, it cannot shut us out. It’s why we have access to schools, hospitals, and community programs today.

    There is exciting news close to home. Lawmakers in Delaware are taking a massive stand by introducing legislation (like Senate Bill 198) to codify Section 504 protections directly into state law. Why does this matter? Because federal protections can sometimes feel like they’re on shifting sand. By putting these rights into state code, Delaware is ensuring that no matter what happens in Washington, disabled Delawareans have broad, enforceable protections for equal access. Perhaps our wonderful Garden State would consider such an initiative.

    We have to stay vigilant. There are currently several states renewing attacks on Section 504’s “integration mandate”—the very rule that keeps us out of institutions and in our communities.

    Section 504 isn’t just a “legal thing”—it’s about our dignity and our right to be “equal and contributing members of society”. Let’s keep building that stronger future together.

    Stay tuned for the next podcast episode! Keep on rolling. Keep on living

  • Television’s Portrayal of Disability

    Television’s Portrayal of Disability

    Podcast Episode

    Description:

    Why is it that in the movies we watch and the reality TV we consume, disability is only portrayed in a handful of ways? Why are we always the “inspiration” or the “tragedy,” but never just the person?

    In this episode of The Advocacy Life, Kevin Nunez delves into the “Exposure Method” to explore how American media sanitizes the disability experience. From the “cute” portrayals on TV to the harsh reality of “survival math” and the lack of “days off” from a diagnosis, Kevin bridges the gap between how the world sees us and how we actually live.

    Show Notes 

    None for this episode.

    Episode Transcript

    https://docs.google.com/document/d/1aHVJO0FY-t5MWVXC0KYNN_wmff1Ur9kL/edit?usp=sharing&ouid=111303226198366895898&rtpof=true&sd=true
  • The Wheelchair Tool

    The Wheelchair Tool

    Podcast Episode

    Welcome back to The Advocacy Life Podcast! In this crucial episode, “The Wheelchair Tool,” we are bridging the gap of understanding between the public and mobility devices. Host Kevin Nunez addresses common misconceptions and misunderstandings about wheelchairs, clarifying the difference between an electric wheelchair and a scooter. Key Takeaways in this episode:Tool, Not a Toy: A wheelchair is an expensive, customized life tool, not an accessory, handbag, or luxury item. Kevin’s new chair, for which he’s been fitted, costs between \$50,000 and \$60,000. The New Chair Goal: Kevin shares his goal of getting a new wheelchair with a rise function to allow him to speak and interact at eye level, and to reach higher shelves. Wheelchair Etiquette 101: Learn the dos and don’ts of interacting with someone in a wheelchair: Never hang off the back or push the chair without permission. Never grab the joystick. Stop the overused, disrespectful jokes like, “How fast does that thing go?”. Defense Mechanism: Kevin discusses how the wheelchair serves as his only defense in public, even during an active shooter drill. Maintenance & Health: The importance of regular servicing, and how being vigilant (like Kevin) can help prevent pressure sores (which are preventable, unlike what happened to Christopher Reeve). Be respectful, be kind, and realize the person in the chair is just trying to live their life the best way they can.Episode Transcripthttps://turboscribe.ai/transcript/share/8457760100267752062/wmlNVLD4RKnq15t6xT7_ZC8Fqyt3qGD_oniImTCAIPI/tal-s4-e2-the-wheelchair-tool

  • The Backwards Life

    The Backwards Life

    A Community Blog

    This blood can be read aloud


    The best way to master a new language is to immerse yourself completely in its culture. For the first community blog of 2026, I invite you to join me in this exploration. I want to invite you into the world of disability awareness—not just to see how I live, but to learn how disability culture can reshape your understanding of the world.

    John 12:25 NIV [25] Anyone who loves their life will lose it, while anyone who hates their life in this world will keep it for eternal life.
     
    From the outside looking in, many people see my life through a lens of lack. They might see a man without a traditional nine-to-five career and assume he has no path, no prospects for a family, or no chance at success. In a society that measures worth by visible output, they might call it a “loser” lifestyle. To an extent, their observations of my physical limitations are correct—but their conclusions are entirely wrong. Disability has taught me the immense value of living what I call a “backwards life”.
     
    In America, we are often guilty of a dangerous short-sightedness. We tend to only value what is directly in front of us—the things we can touch, see, or buy. We chase momentary satisfaction and fast-paced metrics, but disability forces a different perspective. It demands that we look at the bigger picture of humanity. 

    Take the simple act of getting out of bed. I cannot do this on my own. On the surface, that feels like a loss of independence. But in reality, it creates a moment of profound connection. To get up, I have to hug a caregiver or a friend. In a world where so many people live without love or physical affection, I start every single day with a human embrace. Who is truly more “independent”—the person who stands up alone, or the person who begins their day fueled by a community of support?

    During a recent physical therapy session, I took approximately 20 steps. By the end, I was exhausted, drenched in sweat, and guzzling water as if I’d run a marathon. It was a monumental effort for a seemingly small distance. 
    Contrast that with the thousands of people who walk miles every day but never actually “go” anywhere. They move through their lives on autopilot, working jobs they don’t like to buy fashion they don’t need or tools they won’t use. They are moving, but they aren’t progressing. They are chasing a momentary satisfaction that evaporates as soon as the next trend arrives. 
    I am a capitalist—I sell books and bonus content because money and resources are necessary tools for advocacy. But money only matters if you are intentional with it. We are wasting our lives in front of screens and empty consumerism. We are existing, but we aren’t necessarily living. 

    Perspective applies to our hearts, too. Many people spend their lives chasing relationships they know are wrong for them, simply to avoid being alone. I’ve been there. I’ve gone to sleep crying because I had to accept that a person I wanted was not “the one” for me. 

    But I’ve learned that it is better to find the one person who truly matters than to chase four relationships that go nowhere. The “backwards” way to find love isn’t to chase it; it’s to stand out and let it come to you. When you stop chasing the wrong things and instead let your own light shine, the world begins to see you for who you truly are.

    As we move into 2026, I challenge you to look at your own “front-facing” values. Are you walking just to move, or are you walking with purpose? Are you surrounding yourself with things, or with people? 

    Living a backwards life isn’t about moving in reverse—it’s about refusing to follow a society that is heading in the wrong direction. Thank you for being part of this community, for reading, and for listening. Let’s make this year about the things we can’t always see, but that matter the most. 

  • Principles for Advocacy Groups

    Principles for Advocacy Groups

    A Community Blog

    Following up on our conversation last week about the state of disability advocacy, I want to drill down into a crucial, and often painful, question: Why do so many advocacy organizations, even those founded with fire and passion by disabled individuals, stray from their mission and devolve into nothing more than a social club.

    The answer isn’t a lack of passion; it’s a lack of professional structure. For an organization to last beyond its first two years, it must establish a proper foundation. First, there must be a clear mission or purpose. Ideas are plentiful, but without a singular, defined goal, energy dissipates into general activities that accomplish little. This is quickly followed by the necessity of a clear Leadership structure. A plan for decision-making must be ironed out within the first six months; without it, the organization becomes directionless.Mission and leadership mean little without accountability. Proven accountability must be figured out from the very beginning.

    Stakeholders—from staff to community members—need to know how serious issues will be addressed. Furthermore, advocacy requires resources, so a clear financial structure and plan must be in place before you begin. Make your financial proposal accessible and transparent to all interested parties; professional integrity starts with financial transparency.To avoid simply becoming a complaint factory, we must think outside the box. Advocacy organizations must propose solutions and not just complain about problems. This is where we show our mettle. We must also cultivate an organization of advocates willing to do the work, not just talk about doing the work. The dignity of the advocacy movement demands that the organization also take on the dignity of risk—meaning we are willing to take bold action and accept the professional risks that come with true, game-changing efforts.As an organization matures, it must define its lane. What is your competitive Advantage.

    to make your organization different from all the others? Simply advocating for “disabled people” is too broad. You must pull the resources and strength of your membership, recognizing that everyone has a story and a different set of skills. That difference is a strength, not a liability, but it means that not everyone can perform the same tasks.This brings us to mission clarity: If your organization is designed for teaching, then teach. If your organization is for change, then focus on change; you can’t effectively do both without splitting your efforts and diminishing your impact. The advocacy movement is not new, but we are undeniably in a new era, and we need to find new ways to deliver our message.This

    This new era demands structure, specialization, and professional accountability.The time for passion alone to drive advocacy is over. We must match the intensity of our commitment with the clarity of our organizational design. Only then can we guarantee that our organizations last, grow, and truly fulfill their vital mission. For my incredible community.

    Note

    be sharing an additional Community Blog this week to keep our conversations flowing! Until I get my podcast back up and running, you can expect these bonus Community Blogs every Wednesday. Thank you for your understanding and continued engagement!

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