The Advocacy Life Podcast & Blog

Category: Disability Awareness

  • 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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  • 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 Work Beyond the Ballot

    The Work Beyond the Ballot

    This week, I’m sharing something close to my heart. It’s an initiative I’m deeply proud of, but I can’t take full credit for it—it was truly a collective effort. I want to talk about the New Jersey Legislative Disability Caucus, which we launched in December 2020.

    Think back to December 2020. The nation was locked in relentless political debate—red vs. blue, election arguments, constant noise. But while politicians argued, people with disabilities still needed services, healthcare, and baseline access to live healthy, productive lives.

    I’ve often said the biggest flaw in our political system is that elected leaders don’t talk to each other. So, alongside dedicated partners—most notably the New Jersey Council on Developmental Disabilities—we built a space to fix that.

    The New Jersey Legislative Disability Caucus was created as a bipartisan effort to shape proactive policy. Our goal was simple: get lawmakers at the same table before legislation is written, ensuring disability is never treated as an afterthought. The reality is that disability touches every single family at some point. When we design laws proactively with accessibility in mind, we create a country that works better for everyone.

    Since we started, this state initiative has driven meaningful policy forward across New Jersey:

    • Employment First: Incentivizing competitive, meaningful employment for disabled individuals.
    • Health & Safety: Policy targeted at preventing abuse and neglect of people with disabilities.
    • Transportation Accountability: Legislation to improve safety and accountability on school buses.
    • Transition Planning: Dedicated sessions helping young adults with disabilities transition out of the school system into independent adulthood.

    Because we launched during the pandemic, the Caucus started on Zoom—and that virtual format remains one of its greatest strengths. Quarterly sessions are archived online so constituents can watch their elected officials work in real time.

    I encourage you to look into your own state leadership. Other states have caucuses like this too, so search for your local legislative disability caucus and get involved. Keep on rolling, keep on living!

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  • Good Neighbors Needed

    Good Neighbors Needed

    A Community Blog

    As the crisp autumn air settles in and fall officially arrives, pumpkin spice lattes are everywhere, and leaves slowly change colors. On a chilly evening, as I enjoyed my first bowl of homemade chicken soup and zipped up my jacket, a quiet, sobering reality struck me. For many people, this time of year isn’t just about cozy evenings or family gatherings—it marks the beginning of what I call “Lonely Season.”

    While the world gets ready for Thanksgiving, Christmas, and New Year’s, many individuals with disabilities—particularly those living in local group homes—are left watching from the sidelines. There is plenty of liberty out there, but far too often, nowhere to go. Many do not have family nearby, leading to a quiet holiday season without invitations, without someone to share a meal with, or without a midnight kiss on New Year’s Eve.

    In America, we pride ourselves on being community-minded. Yet, an entire class of people right down the street remains largely invisible—not out of malice or pity, but out of simple inconvenience. Group home facilities sit right in our residential neighborhoods, surrounded by houses, but few neighbors ever drop by to build genuine relationships with the residents inside.

    What does it truly mean to be a good neighbor?

    • Share the Warmth: The next time you grab a pumpkin spice latte or a coffee for a coworker, consider dropping off a couple at your local group home. Do it not out of pity, but out of basic neighborly courtesy.
    • Extend the Table: When baking bread or prepping meals for the holidays, make an extra loaf or dish and drop it off for the residents. A small gesture of connection can transform someone’s entire week.
    • Practice Genuine Inclusion: Across our nation, thousands of houses of worship open their doors weekly. Yet, individuals with more significant behavioral or physical needs are sometimes subtly discouraged from attending because they might make noise during a service. True worship and community shouldn’t come with strict rules of quiet compliance—everyone deserves a seat at the table.

    Disabilities do not exclude someone from being a friend, a peer, or a neighbor. As the season turns cold, let’s make sure our communities stay warm. Be a neighbor. Be a friend.

    Keep on rolling, keep on living.

    See you next week.

    The Advocacy Podcast

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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

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  • Reclaiming our Unity

    Reclaiming our Unity

    I usually don’t post a community blog on Fridays. In fact, I have a personal policy of limiting the number of blogs I publish each week. But today is a very special day for all the wrong reasons. Today marks the 25th anniversary of the September 11th attacks on the World Trade Center and on America as a whole. 

    To me, September 11th has always been a deeply somber day. I often feel, sadly, that America has forgotten the tragic realities and ultimate sacrifices made that morning—the people who were forced to leap from burning towers to find a merciful end, the individuals who burned alive, and those who couldn’t even make a final phone call to loved ones as their hijacked planes carried them toward tragedy.

    It is striking how, 25 years later, a day that once united all Americans in shared grief has given way to a country more divided than ever. We have built a quasi-psychological civil war. It feels as if every time we meet someone new, we run them through an ideological checklist. If they disagree with us on any single political point, we automatically brand them as the enemy.

    On September 11, 2001, it didn’t matter what color you were on the outside you wore on the outside. The blood we shed was all red on the inside. In the hours and days following the attacks, the first thing visible across the nation was a line of citizens standing together, eager to donate blood and volunteer their time to aid the injured and support their country. On that day, there were no red states or blue states—there was simply the United States.

    Today, we have degraded into a culture of constant complaining. Instead of seeking genuine solutions to our collective problems, political factions find it far easier to point fingers and blame specific individuals or political parties. 

    We are better than this, America. We should not require a catastrophic national tragedy to remind us of how great our country is, can be, and will be in the future. We must remain focused on what it truly means to be Americans, to hold genuine pride in our nation, and to look after our fellow citizens. 
    Don’t give up. Don’t forget. Don’t let evil win. 

    Don’t give up. Don’t forget. Don’t let evil win.  God bless our troops and God bless America.

    The Advocacy Podcast

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  • Beyond the Lens

    Beyond the Lens

    Community Blog

    Welcome to the first community vlog entry of fall! I hope you all had a great summer. Today, I want to talk about group homes—specifically, how many of them have gradually turned into smaller, satellite institutions rather than true community homes.

    The fundamental problem with most group homes is that they rarely feel like an actual home to the people living in them. For individuals in their mid-to-late 30s or 40s—the average age of most residents—a constant stream of shift staff comes through the door every day, working eight hours at a time. You constantly adjust to new people entering your personal space. Having conducted state program investigations in group home facilities years ago, I’ve seen this reality firsthand. I’ve watched how hard it is for residents who don’t just want to reside in a neighborhood, but actually want to be an active part of their community.

    Recently, in New Jersey, there has been a major legislative push driven by concerned parent groups to mandate cameras in all major group home facilities. (S1172 / A2705)

    While safety, abuse prevention, and neglect prevention are the primary arguments for this bill, mandating cameras is a dangerous idea and a slippery slope.

    Here is why this approach misses the mark:

    • In a typical household, you do not have cameras capturing your every move in the living room 24/7. Proponents argue that schools and buses have surveillance, but you don’t live at a school or on a bus. In your own home, you should have the right to privacy in your most personal moments without constant surveillance.
    • Surveillance footage does not stop abuse or neglect as it happens; proper staff training and accountability do. Cameras only offer distressing images after a tragic event or death has already occurred. In New Jersey alone, there are roughly 150 unexplained deaths in facilities a year. A camera recording after the fact does not save a life; it only leaves families with unsettling images and more questions.
    • The current bill in the New Jersey legislature does not mandate audio recording. Key context becomes completely lost without audio. Furthermore, under the proposed language, the group home provider retains control of the footage before any family member can access it, leaving room for footage manipulation.

    In its current form, this legislation is a dangerous precedent that fails to protect residents while stripping away their fundamental right to privacy in their own homes. What are your thoughts on this bill and the distinction between safety and privacy in community settings? Let’s keep the conversation going in the comments below, and I’ll see you next week!

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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

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  • 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