Tag: disability blogger

  • 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. 

  • 10 Core Principles For Life

    10 Core Principles For Life

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  • 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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  • The League Of Disabled Americans ( The Big Idea)

    The League Of Disabled Americans ( The Big Idea)

    A Community Blog

    For years, I’ve observed and participated in the vital work of disability advocacy. We have incredible organizations, passionate individuals, and powerful stories. Yet, despite our collective strength, there remains a persistent sense that we often react rather than truly shape the national agenda. We fight battles, win some, lose some, but the systemic shift that many of us yearn for feels perpetually just out of reach.

    It’s time for a new approach. It’s time to think bigger, to act more strategically, and to consolidate our power where it matters most: influencing policy at the highest levels. My vision is for a new advocacy organization, unlike any other, dedicated solely to influencing policy in America. I call it: The League of Disabled Americans.

    This League would be comprised exclusively of individuals with disabilities – a powerful testament to our lived experience and expertise. Imagine: two representatives from each of the 50 states, plus two from each of the U.S. territories, for a total of 112 dedicated advocates. Each member would be directly nominated by the disability community within their respective state or territory, ensuring true grassroots representation and accountability.

    From day one, this body would operate with a clear, decisive purpose. A steering committee, formed from these initial representatives, would immediately begin drafting a concise list of goals and objectives. These wouldn’t be vague aspirations, but concrete policy targets. Well-organized instructions and bylaws would govern its operation, ensuring transparency, efficiency, and a unified voice. This is about precision, not popularity contests.

    One of the greatest pitfalls for many advocacy organizations is thinking too small and attempting to grow organically without a clear, scaled strategy. The League of Disabled Americans would reverse this paradigm. Instead of building from the bottom up, hoping to gain traction, we would think backwards. What is the ultimate, audacious goal – a truly inclusive America, fully represented in policy? Now, how do we break that down into smaller, achievable objectives that culminate in that vision? This means setting a high bar from the outset, focusing on impact, and building a structure designed for influence.

    Crucially, this organization needs to start with well-recognized advocates. This isn’t to exclude anyone, but to establish immediate credibility and leverage. We need figures who command respect, who understand the political landscape, and who can walk into a room and be heard. The goal is to establish a presence so undeniable that organizations, legislative bodies, and policymakers come to us for insight and partnership, rather than us constantly having to beg for funds and support. We must shift from being supplicants to being indispensable partners in policy development.

    Finally, and perhaps most importantly, The League of Disabled Americans would exist to help break down the silos within the broader disability advocacy community. We are too often fragmented, each fighting our own specific battle. While vital, this fragmentation can diminish our collective power. The League would serve as a unifying force, identifying cross-disability issues, sharing best practices, and presenting a cohesive, national front on policy matters that affect us all. It would be a hub of knowledge, strategy, and power, ensuring that the diverse voices of the disabled community speak with a singular, unignorable purpose in the halls of power.

    This is an ambitious vision, yes. But the time for timid advocacy is over. The time for a truly independent, disabled-led, policy-focused force is now. Let’s build the League of Disabled Americans and demand our seat at every table where decisions are made.

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  • November 10,, 2025 Disability Limbo Newsletter

    November 10,, 2025 Disability Limbo Newsletter

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  • A Message to the New Governor

    A Message to the New Governor

    “The price of freedom is eternal vigilance,” Thomas Jefferson famously declared.

    I’m writing this blog just hours before the election results roll in here in New Jersey. By the time many of you read this, our state will probably have a new governor-elect. If I could address the incoming governor, I would start with this: Do not forget us.

    The disability population is the largest, most underserved, and most underrepresented community in America. We are voters. We are taxpayers. We are citizens. Yet, we are an afterthought, if thought of at all. Our needs are frequently sidelined in policy debates, treated as niche issues rather than fundamental human rights. This needs to change.

    Our community is incredibly diverse. Disability comes in every skin color, every background, every walk of life. It touches families across all demographics, socio-economic statuses, and geographic locations. This means that disability rights are unequivocally human rights. They do not subscribe to any single political party, and our allegiance isn’t to a red or blue banner, but to the dignity of every person.

    We stand for policies that genuinely support independence and self-determination, not those that inadvertently trap individuals in poverty or limit their potential. The disability experience is unique to the individual; a “one size fits all” approach simply does not work. We need policies crafted with nuance, understanding that what empowers one person may not work for another. We need legislation that respects the dignity of risk, allowing individuals to make choices, to learn, to contribute, and to live full, meaningful lives without fear of losing essential supports.

    Many people with disabilities can and want to work. We want to contribute to our communities, to pay taxes, and to be active participants in the economy. Yet, current systems often create perverse disincentives, penalizing individuals who earn above a certain threshold by stripping away vital benefits like healthcare or personal care assistance. This traps people in a cycle of dependence when they desire nothing more than to be independent. Help us break these barriers. Help us contribute without fearing penalty. Help us be taxpayers, not perceived burdens.

    Our community wants to contribute, not just consume resources. We seek opportunities, not charity. We demand respect, not pity. We are a vital part of New Jersey, and our voices deserve to be heard, our needs addressed, and our rights protected.

    As the new administration takes shape, I urge them to remember Thomas Jefferson’s warning. The freedom and well-being of the disability community depend on constant vigilance from our leaders. We will be watching, advocating, and striving for a New Jersey where every citizen can thrive.

  • Disability Limbo Newsletter November 3, 2025

    Disability Limbo Newsletter November 3, 2025

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  • Beyond the Sandbox

    Beyond the Sandbox

    Community blog

    “Being all equal and independent, no one ought to harm another in his life, health, liberty, or possessions.”

    These words, penned by John Locke in his Second Treatise of Government, form a cornerstone of the philosophy. That speaks to a fundamental understanding of human dignity and mutual respect. Yet, as I watch the political theater unfold in Washington, with the government shutdown extending beyond six weeks and critical aid hanging in the balance, I can’t help but feel a profound disappointment between these foundational ideals and the harsh reality facing millions of Americans.

    The job of the legislative branch, in its most basic form, is to look after the interests of the people. “The voice of the populace” is the protector of our collective well-being. Right now, while our elected officials bicker, real people are staring down the barrel of unimaginable hardship. Mothers, individuals with disabilities, and teachers—some of the most vital threads in our societal fabric—are in danger of losing their food stamps after November 1st. The SNAP deadline looms, threatening to strip away essential support from those who depend on it most to put food on their tables. Meanwhile, those who are supposed to be serving us are still getting paid, seemingly for not doing their jobs.

    “We the People of the United States, to form a more perfect Union, establish Justice, insure domestic Tranquility, provide for the common defence, promote the general Welfare, and secure the Blessings of Liberty to ourselves and our Posterity, do ordain and establish this Constitution for the United States of America.”- Preamble of the United States Constitution.

    This isn’t the fault of one side alone. This crippling gridlock is a failure shared by both Democrats and Republicans. Instead of focusing on the big picture – the welfare of the citizens they swore to represent – they’ve become like children refusing to play in the sandbox. Each side digs in, unwilling to concede an inch, while the very people they serve suffer the consequences.

    “Both sides must part from some of their demands in order that they may join in some accommodating proposition.”-Benjamin Franklin

    This isn’t weakness; it’s the essence of effective governance. It’s the recognition that the greater good often requires compromise, a willingness to find common ground for the sake of the nation. Ensuring access to healthcare, or providing stability for those who depend on government programs to have a semblance of a quality of life.

    A government shutdown of this duration is not a mere inconvenience; it’s a national crisis in slow motion. People will suffer. Those already living on the margins will be pushed further into despair. The fragile lifelines so hard-won and essential for survival, are being torn apart by political posturing. The consequences are real, immediate, and devastating.

    We, as citizens, must demand better. We must remind our representatives of their fundamental duty: to protect the life, health, liberty, and possessions of all their constituents. This isn’t about choosing a side; it’s about choosing humanity. It’s about insisting that our leaders move beyond the partisan sandbox and fulfill the promise of a government that actually works for its people.

    Let us hold them accountable, not for their party affiliation, but for their commitment to compromise, to service, and to the basic principles of equality and mutual respect upon which this nation was founded. Our most vulnerable cannot afford their games.

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  • The church’s Disability

    The church’s Disability

    A Community Blog

    For many of us in the disability community, our relationship with faith can be incredibly complex. We love the Lord, we crave spiritual connection, but too often, the very places meant to offer solace—churches—become spaces of discomfort and judgment. It’s a paradox that weighs heavily on the soul.

    Who wants to go to church and be constantly stared at? Who wants to attend a funeral, already a time of immense grief, only to hear the pastor speak about the deceased as if they were a stranger, completely unaware of the rich life lived by the person with a disability they are meant to be celebrating? These aren’t isolated incidents; they’re common experiences that chip away at a sense of belonging.

    That’s precisely what so many well-meaning congregations don’t quite grasp. As a disabled person, when you feel that energy – the pity, the awkward glances, the unspoken questions – it actively pushes you away, no matter how much you yearn for spiritual connection. You feel like an outsider, an anomaly, rather than a cherished member of the flock. It makes you want to retreat, to seek God in the quiet solitude of your own home, far from the subtle rationalization.

    What truly frustrates me is the disconnect. People gather to praise and worship, singing about love and community, yet many remain firmly entrenched in their own safety bubbles. They’ll lift their hands in adoration but won’t extend one to say hello at fellowship. They’ll preach inclusivity but practice exclusivity, often unconsciously. The truth is, you’ll never be able to reach everyone, but that doesn’t mean we stop trying to bridge the gap between professed faith and lived acceptance. This isn’t about malice; it’s about a lack of understanding, a failure to truly see and welcome.

    My dream? I would love to walk into a congregation—or roll into it, as the case may be—and see it bustling with wheelchairs and walkers, with people of all abilities steaming with joy for God. Too often, I’ve been the only person with a disability in the church. Or, if there are others, they’re tucked away in a corner, out of sight, out of mind, so as not to “bother” the rest of the folks. This isn’t what true community looks like. This isn’t what radical love looks like.

    Matthew 18:20 NIV “ For where two or three gather in my name, there am I with them.”

    We need spaces where our presence isn’t an inconvenience, our bodies aren’t a spectacle, and our faith is celebrated just as vibrantly as anyone else’s. It’s about creating an environment where the spirit can truly soar, free from the burdens of judgment and isolation. We need churches willing to step out of their comfort zones, not just physically accessible buildings, but truly accessible hearts.

    A quick note for my incredible community:

    I’m currently traveling and, unfortunately, don’t have access to my podcast equipment right now. Because of this, I’ll 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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  • Disability Limbo Newsletter October 20, 2025

    Disability Limbo Newsletter October 20, 2025

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