The Advocacy Life Podcast & Blog

Tag: disability

  • Disability Language Controversy

    Disability Language Controversy

    Hi friends, welcome back to another community blog post. I apologize that this one is a day late—we were busy celebrating my grandmother’s 84th birthday! She had more energy than I did, so God bless her.

    Today, I want to dive into a topic that is always front and center in our community: disability and language.When we refer to our population, there are generally two primary frameworks: Person-First Language and Disability-First (Identity-First) Language.Person-First Language puts the individual before the condition (e.g., a person with Down syndrome, a person with autism). The core philosophy here is that the individual is a human being first, and their disability is just one aspect of who they are.

    Disability-First (Identity-First) Language places the disability attribute upfront (e.g., an autistic person, a blind person). Proponents often argue that separating the person from the disability can feel like minimizing or denying a fundamental part of their identity, viewing strict person-first language as a form of ableism.

    Where Do I Stand?

    This is a deeply personal and often controversial debate within the disability space. My personal stance is simple: To each their own. If you look at my writing, you will notice that I tend to mix both approaches. Personally, I lean toward person-first language in most aspects of life because I believe Kevin the person is separate from my cerebral palsy. Disability is just a part of who I am. At the same time, I certainly don’t think disability-first language is wrong. But for me personally, identifying solely by my disability first feels a bit uncomfortable. Language is powerful, and it acts as a tool—just like a hammer or a knife, it can be used to build something wonderful or to tear it down. We have to use our words with grace and intentionality.

    If you want to dive deeper into why language matters and how different advocacy groups approach it, check out these trusted resources:

    American Psychological Association (APA) Style Guidelines on Disability – Offers comprehensive guidance on how to write and speak about people with disabilities with neutrality and respect.

    National Center on Disability and Journalism (NCDJ) Style Guide – An incredible tool for journalists, creators, and advocates looking up specific terms, preferred language, and the history behind various disability descriptors.

    Autistic Self Advocacy Network (ASAN) – A great resource for understanding why many self-advocates within the autistic community strongly prefer identity-first language (autistic person).

    The Arc – Preferred Language Guide – One of the oldest and largest community organizations providing clear breakdowns on why language choice matters in public policy and daily life.

    This is a rich, ongoing conversation, and there is no single “right” answer for every individual. What are your thoughts? Do you prefer person-first or disability-first language in your daily life? Let me know in the comments below! Thank you guys, and as always—keep on rolling, keep on living!

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  • Facing the Future

    Facing the Future

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  • Disability Priorities & Congress

    Disability Priorities & Congress

    Have you heard of the HCBS Relief and Stabilization Act? Probably not.

    For this week’s community blog, I want to focus on a specific piece of legislation—or rather, a resolution—that offers a big-picture view of the disability movement and examines where we truly rank in America.

    For those unfamiliar, HCBS stands for Home and Community-Based Services. To oversimplify it, HCBS is a waiver care system funded by Medicaid and Medicare dollars that allows people with disabilities to stay in their homes and local neighborhoods. Regardless of age or level of need, it is always cheaper, more beneficial, and more humane for a person to thrive and function directly within their local community.

    This resolution seeks to uphold and expand Home and Community-Based Services while establishing more significant safeguards for our direct support professionals (DSPs). It directly responds to legal uncertainties following filings like Texas v. Kennedy, which left critical disability care frameworks at a stalemate.

    Through this resolution, members of Congress are attempting to signal to disabled voters and our population as a whole just how much we mean to them.

    While this bipartisan effort is a welcome sight—notably supported by primary sponsors like New Jersey’s own Congressman Tom Kean Jr.—we cannot allow ourselves to be misled.

    It is no coincidence that a resolution like this gains momentum right around election time, or that key co-sponsors are currently running for re-election. So, to politicians on both sides of the political aisle asking for our votes: prove it.

    Show us that we matter. Show us that disabled Americans are a priority. Show us that we are a vital, indispensable part of this nation.

    Lately, there has been a massive push in legislative halls for data centers, infrastructure developments, and commercial housing initiatives. While infrastructure is important, people come first in America. America is funded and run by the people, and people with disabilities are people first.

    To Congressman Kean and all leaders stepping up: thank you for your leadership on this resolution. But to the rest of Congress: it’s time to put your priorities in order and prove that disabled America is a permanent priority, not a seasonal campaign slogan.

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  • The Power of the Chair

    The Power of the Chair

    School starts after Labor Day in New Jersey, and as a kid, that always meant new clothes, new school supplies, and a brand-new wheelchair. This year was different. My new chair didn’t arrive until March.

    The price tag on the chair I’m sitting in to write this? Nearly $60,000.

    When you hear a number like that, it’s easy to do some dark math. Is $60,000 the price tag on my independence? Am I worth $60,000? Why does basic human mobility cost as much as a luxury sedan? That’s an algorithm for insurance companies and policymakers—a topic that usually sits above my advocacy pay grade. But here’s what I can tell you: this technology keeps me from being confined to a bed. It would feel unlivable. With it, I can roll out into the world, make my voice heard, and face life head-on.

    For years, living in a wheelchair meant existing in a world built for vertical people. Everyone else’s chest or waist was where I always saw the world from. But this new chair comes with hydraulic elevation.

    Not long ago, I was at a bar with high-top tables where everyone was standing. Typically, I’d be at a huge disadvantage, craning my neck up just to participate in the conversation. This time, I hit a button on my joystick, elevated my seat, and held a conversation at true eye level. For the first time, I wasn’t being talked down to—literally or figuratively. That single moment alone was worth the price of admission.

    Since I spend at least six to eight hours a day in this chair, I’ve learned a thing or two about how the rest of the world interacts with mobility devices. For those of us who use them—and for the non-disabled allies reading this—here are a few basic ground rules:

    • Running someone over with a wheelchair isn’t a funny prank like in the movies; it’s the exact equivalent of hitting someone with your fist. Treat a person’s mobility equipment with the same respect you’d treat their personal space.
    • Wheelchairs are highly technical, custom-built, and absurdly expensive. Well-meaning people often try to grab the handles or push without asking. You could easily damage the chair or throw off the user’s balance. Always ask first.
    • Bodies break down, and chairs break down. They collect dust, weather, and yes, the occasional stray French fry in the cushions. Keeping a chair clean is part of the routine of staying functional.

    A chair can feel restrictive at times, but so can any human body. Ultimately, it isn’t a cage; it’s a platform. It’s the tool that lets me show up to council meetings, write books, host my podcast, and advocate for our community.

    Your mobility device doesn’t define your worth, but it can certainly amplify your power. Take care of your gear, demand respect for your space, and never let anyone talk down to you—no matter what height you’re sitting at. Keep on rolling. Keep on living.

    The Advocacy Podcast

    Living Beyond Disability Books

    Both books are available exclusively on Amazon.

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    This is an exclusive weekly blog on the more fun and creative side of Kevin and his colleagues..

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    This is an affiliated podcast that the advocacy life often collaborates with on Check it out today available on all podcast platforms and YouTube..

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  • RFK Embodies Fear

    RFK Embodies Fear

    “These are kids who will never pay taxes. They’ll never hold a job. They’ll never play baseball. They’ll never write a poem. They’ll never go out on a date. Many of them will never use a toilet unassisted.” Robert F. Kennedy Jr.

    I want to state from the outset: I don’t hate RFK Jr. I respect and love him as a fellow human walking this earth, despite disagreeing on several key issues. Quotes like these are particularly damaging. They embody the ableism and fear that permeate modern American culture.

    The problem with this perspective is that it ignores the fundamental truth that every person with a disability has their own unique journey, their own growth process, their own setbacks, and their own successes.

    So often, people with disabilities are lumped into boxes by a system that refuses to let them out. We are treated as if our lives are a “nice, comfortable jail cell.” We don’t realize that the door is a cell door until it gets slammed in our faces—and by then, it’s too late to get out.

    RFK Jr.’s comments about dating are a prime example of the dehumanization we face. Just because someone may be non-verbal or have different physical needs does not mean they are unable to consent to or enjoy a loving, caring relationship. There are plenty of non-verbal individuals who have had rich, complex romantic lives—some of them having had more sexual encounters than I will ever have!

    Society often measures our value by our productivity—by whether we pay taxes or hold a traditional job. With the new “Home and Community Based services HCBS” cuts coming to the nation in October 2026, many of us will be forced to choose between our health insurance and our ability to work.

    We are forced to disclose our limitations and decide: Do we stay in poverty to keep our benefits, or do we risk it to earn a little bit of money? It is these societal norms that are damaging us, not our wants or our wills. We want to work—we want to work harder than most other Americans. We just need the real opportunities to do so.

    Quotes like these don’t help anyone; they just hurt. If you want to help someone with a disability, don’t look for what you think they “can’t” do. Make them stronger, and they will make you better.

    Don’t be afraid of us. Thrive with us. Push us. Educate us—because we can educate you in the same way. Together, we can learn from each other. That is what a good society does. That is what a good America does.

    Keep on rolling, keep on living.

    The Advocacy Podcast

    https://open.spotify.com/show/43cXNazVa1SBv2Iy7fQb8s?si=e59db1a4a5c24319

    Living Beyond Disability Books

    Both books are available exclusively on Amazon.

    Subscribe to Letters From Limb. Newsletter

    This is an exclusive weekly blog on the more fun and creative side of Kevin and his colleagues..

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    This is an affiliated podcast that the advocacy life often collaborates with on Check it out today available on all podcast platforms and YouTube..

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  • Naked for Valentine’s Day

    Naked for Valentine’s Day

    Community Blog

    Note: The following is an excerpt and refresh of a chapter from my book, “Confessions From Disability Limbo.” It is a raw, crude, and honest look at disability life. With Valentine’s Day just a few days away, everyone is talking about romance and intimacy. But today, I want to talk about a different kind of “getting naked”—the kind that has nothing to do with sex and everything to do with being human.I have a problem. I know some will find this controversial. I’m half-expecting an email from a legislative office removing me from my committees, and I’m fairly certain my mother and grandmother are already lining up to scold me. But I beg your indulgence. This is advocacy in its purest, most unfiltered form.I have to ask: Are you comfortable being naked

    A few years ago, I was on respite with my twin brother. The staff had undressed me and placed me on the bed when my brother suddenly had an urgent need for the restroom. The staff rushed to help him, leaving me like Adam in Paradise before he discovered the fig leaf.Did I panic? No. I rolled over, grabbed my phone, and started blasting music. A few minutes later, the staff walked back in to find me in my own little world, air-drumming with everything I had to the epic solo in Phil Collins’ “In the Air Tonight.”

    It was a ridiculous moment, but it highlighted a strange reality of my life: While I am often uncomfortable with my body, I have become incredibly comfortable being naked around strangers.I am a 38-year-old male, roughly 130pounds, exactly five feet tall, with hair everywhere but my head and a collection of scars from past surgeries that tell the story of my survival. I won’t be on the cover of GQ anytime soon.

    For me, being naked isn’t about romance; it’s about maintenance. Most people only show their bodies to those they love and trust. For those of us with disabilities, our bodies are often “public property.” We are poked, prodded, lifted, and cleaned by people we barely know. We have to trust a stranger to handle our most private needs with dignity.I am one of the lucky ones. For many in our history, being naked wasn’t a moment of Phil Collins air-drumming; it was a tool of torture. In the old institutions, cold showers were used for behavioral control. Vulnerability was met with violation.

    Even today, I think about the non-verbal members of our community. How do you communicate that the water is too hot? How do you maintain your soul when your body is being handled like a piece of equipment? This happens every single day.A Valentine’s Challenge: Get RealAs Valentine’s Day approaches, we are bombarded with images of “perfect” bodies. We are told that intimacy is about performance. I want to challenge that.True intimacy is the ability to be seen—fully seen—without a mask. I have a challenge for every person reading this, whether you are able-bodied or disabled:Talk to someone you love while you are nude. I don’t mean sex. I don’t mean it as a joke. I mean sit in that vulnerability and have a real, personal conversation about your life, your fears, or your dreams.

    The Rules:No “Post-Sex” Cheating: Don’t do it when the oxytocin is flowing and everything feels perfect.No Attention Seeking: This isn’t a “look at me” moment.No Distractions: Don’t ask, “Does this mole look weird?” Keep it real.The most important conversations of my life have happened in these moments of total exposure. When you take away the clothes, the suits, and the “Advocate Kevin” persona, all that is left is the man.I share these experiences because society often forgets that people with disabilities are people first. We deserve dignity in our vulnerability and respect in our nakedness.Thank you to anyone brave enough to try this. Happy Valentine’s Day.Keep on rolling. Keep on living.

    The Advocacy Podcast

    Living Beyond Disability Books

    Both books are available exclusively on Amazon.

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    This is an exclusive weekly blog on the more fun and creative side of Kevin and his colleagues..

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    This is an affiliated podcast that the advocacy life often collaborates with on Check it out today available on all podcast platforms and YouTube..

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  • 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. 

  • 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.

  • Laughing with Your Disability Podcast Episode

    Laughing with Your Disability Podcast Episode

    Laughter is powerful. It can disarm uncomfortable situations and help us connect with one another on a deeper, more human level. In this episode of The Advocacy Life, I explore how embracing humor, even in the most embarrassing moments, can be an incredible tool for living with a disability.

    I share three personal stories where laughter became my saving grace. The first involves a spectacular fall at a Boston Market, a moment where my poor depth perception led to an unexpected tumble. My staff and I couldn’t help but laugh, and it became a family joke. The lesson? When you fall—physically, mentally, or spiritually—laugh, learn, and get up.

    My second story is more personal, a lesson in unexpected growth during an intimate moment with a new caregiver. It was uncomfortable, but by teaching and growing together, we built a lasting friendship.

    Finally, I recount a time when I was angry and isolated, purposely hiding from my peers with disabilities. The staff and clients at my day program played a prank on me with a speaker that made fart sounds, and it was that ridiculous, joyous moment that made me feel truly welcome. It taught me that kindness and acceptance are key to overcoming ableism, a lesson that everyone, with or without a disability, needs to learn.

    This episode is about more than just a few laughs. It’s a reminder to find the joy in the unexpected, to embrace awkward moments, and to welcome others with open arms.

    Podcast Transcript

    The Advocacy Podcast

    Living Beyond Disability Books

    Both books are available exclusively on Amazon.

    Subscribe to Letters From Limb. Newsletter

    This is an exclusive weekly blog on the more fun and creative side of Kevin and his colleagues..

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    This is an affiliated podcast that the advocacy life often collaborates with on Check it out today available on all podcast platforms and YouTube..

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  • Advocacy day 1 Podcast

    Advocacy day 1 Podcast

    My Start in Advocacy

    Greetings, my friends, and welcome. In this world, it’s not always easy to understand the path you’re meant to follow. For a long time, I was lost. When I was 18, I was very disappointed in myself and in the world because I could not go to college. At that time, it was not in the cards, and I was very angry. I had basically given up and accepted the fact that I was worthless and I couldn’t do anything.

    That all changed because one person didn’t give up on me. My school had a transition coordinator who always had my best interest at heart, even though I was, without a doubt, the most difficult client she ever had. She gave me this application for a course called

    Partners in Policymaking, which she described as a disability learning think tank. I filled it out very, very, very basically—I wrote a bunch of crap because I didn’t believe in myself. But she saw my potential. She made me do better, telling me I could do a better job and made me write an essay on top of it.

    Months later, I got a call from the program director, who said she was very impressed with my words. I had no idea what I had said, even to this day. When I finally went to the first session, I purposely sat in the back because I didn’t feel like I belonged. Where I grew up, I was one of the only kids with a physical disability, and I had no concept of the disability community, or of inclusion.

    But as I listened to the stories of the other families and people in that room, I realized something. I’m not alone. There’s a whole community out there for you. I learned more from listening to their stories and successes than I did from the actual course. It was the first time as an adult I had ever been left alone as a person. I had never even slept in a room by myself before. That experience taught me that I wasn’t helpless, that I had resources, and that I could manage a situation on my own.

    One course, one day, one person changed my life. What was that one course, that one day, or that one person for you? Let me know in the comments below! Full podcast episode is below as well.

    episode transcript

    The Advocacy Podcast

    Living Beyond Disability Books

    Both books are available exclusively on Amazon.

    Subscribe to Letters From Limb. Newsletter

    This is an exclusive weekly blog on the more fun and creative side of Kevin and his colleagues..

    Where the Ramp Ends

    This is an affiliated podcast that the advocacy life often collaborates with on Check it out today available on all podcast platforms and YouTube..

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