The Advocacy Life Podcast & Blog

Tag: blog

  • The Heart of an Advocate

    The Heart of an Advocate


    There’s no way around it: living with a disability is difficult. But choosing to be an advocate and a leader for the disability community? That is even harder.

    Welcome to our latest Community Blog installment. Here at The Advocacy Life, we believe in pulling back the curtain on what it truly means to represent a movement. Often, when people think of leadership, they think of “fame, fortune, and finish lines.” But in the world of disability advocacy, the reality looks a lot different.

    If you are looking for a get-rich-quick scheme, advocacy is not it. More often than not, there is no money involved. At best, you might be reimbursed for your expenses; realistically, you’ll likely lose more financially than you’ll ever gain.
    It isn’t about fame, either. I’ve been blogging for four years, and I haven’t hit 500 followers. On YouTube, I’m under 200. These aren’t the kind of metrics that make you a “social media influencer.” And let’s be honest—it doesn’t exactly help your dating life. There is nothing less “impressive” to a potential partner than saying you stayed up all night drafting bylaws for a non-profit organization.

    It isn’t even about job security or status. If I resigned tomorrow, the mission would continue. Someone else would step in to fill the seat. So, if there’s no money, no fame, and no status, it leads to one fundamental question:

    For the Ones Who Can’t Speak
    The reason I choose to dedicate my life to this work is simple: I do it for the ones who can’t speak for themselves.
    I have a profound love for my brothers and sisters who are non-verbal. I love the way they communicate their needs and desires through action, presence, and spirit, even when they can’t find the words. I consider it a sacred responsibility to be the interpreter for those who just need a little extra time to be understood.

    When leaders or policymakers call me for input, I don’t pick up the phone for credit. I pick it up because there is an unmet need in our community, and someone has to “man up” or “woman up” to address it.

    It infuriates me when I hear people say, “I can’t be an advocate  or “I’m just not the advocacy type.” When you live with a disability, this is your community. These are your people. Whether you like it or not, when you speak up, you aren’t just speaking for yourself—you are speaking on behalf of a community. Yes, your individual circumstances are unique, but your voice contributes to the collective volume of our movement.

    When you choose silence, or when you say you “can’t do it,” you aren’t just letting yourself down—you’re letting down the community you are a part of. You are letting down a vital part of the American story.

    To my fellow men and women with disabilities: we need you. The future of our rights and our resources depends on a collective effort. We cannot build a better future if only a few of us are willing to do the thankless work of drafting bylaws, attending meetings, and speaking truth to power.

    If you feel like you don’t know how to start, reach out to us. That is why this Community Blog exists—to provide the tools, the encouragement, and the platform for others to find their voice.
    We need to get together now, not later. Because when we speak together, we create a future where everyone is heard.

    Thank you for reading this week’s Community Blog. If this resonated with you, please share it with a fellow advocate who needs to hear that their hard work—even when unpaid and unnoticed—matters.Keep on rolling. Keep on living.

    Listen to the blog here

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  • Disability Limbo Newsletter October 20, 2025

    Disability Limbo Newsletter October 20, 2025

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  • Disability Misconceptions

    Disability Misconceptions

    Every now and then, I get frustrated—not because I’m angry at individuals, but because there’s still so much misunderstanding about disability. What seems straightforward to me often isn’t to others. So, instead of stewing about it, I’ve decided to put together a list of things that I hope will help educate and shift perspectives.

    Luke 6:31 NIV 31 Do to others as you would have them do to you.

    1. Not All Disabilities Are the Same

    We say “everyone is different,” yet so often people treat disability like a one-size-fits-all label. You could line up ten people with the same medical diagnosis, and each one would be affected in a completely different way. Needs, goals, and abilities vary from person to person. What someone can or can’t do depends on a mix of their individual abilities, the support they receive, and the resources available to them.

    2. We’re Not Here to Inspire You—Just to Be Your Equal

    It shouldn’t be “inspirational” just to see someone with a disability walking down the street. And yet, when we live independently—with the right support—people often question it. Why? We’re just living our lives like anyone else. We want to be treated as equals, not exceptions.

    3. Be Flexible

    Life doesn’t always go to plan for anyone—and that includes those of us with disabilities. Flexibility, patience, and understanding go a long way when you interact with us. A rigid mindset helps no one.

    4. Hollywood Gets It Wrong—A Lot

    Movies often miss the mark when it comes to portraying disability. Sure, actors like Tom Hanks and Cuba Gooding Jr. have received awards for their roles, but their performances don’t always reflect reality. Times have changed, and so have our perspectives. It’s important to remember that what you see on screen is entertainment—not education.

    5. Ask Questions—Just Be Respectful

    Curiosity is fine. But respect is essential. If it’s something you wouldn’t want to be asked or called, don’t say it to someone else—disability or not.

    6. Disability Doesn’t Discriminate

    It doesn’t care about your skin color, background, or bank account. Anyone can be affected. And just because something is written in a study online doesn’t mean it reflects the lived reality of everyone.

    7. We Get Tired Too

    Yes, everyone gets tired. But for many people with disabilities, there’s no “clocking out” at the end of the day. The challenges don’t stop at 5 p.m. Sometimes you just don’t want to use the wheelchair or the communication device. And speaking of that—imagine how exhausting it is trying to communicate when you can’t speak.

    8. Laugh With Us, Not At Us

    Humor is powerful—and we love to laugh! But make sure you’re laughing with us, not at us. That small shift makes all the difference.

    9. Don’t Pity Us—Just See Us

    We know life isn’t easy. But we’re doing our best, just like you are. We don’t need pity. We need understanding, support, and a fair shot.

    I know this list isn’t revolutionary, and it might not be the most eloquent thing you’ll ever read. But I’ve kept it simple for a reason: clarity helps change hearts. Maybe someone will print this out and stick it on the fridge. Maybe the next time they meet someone with a disability, they’ll see the person—not just the label.

    Thanks for reading. Be kind. Be curious. Be human. Good night, friends.

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  • For the Love of America

    For the Love of America

    I am a political nerd. I like to watch C-SPAN when I can. This week I knew something special was going to happen. In case you missed it, New Jersey Senator Cory Booker was on the Senate floor for over 25 hours. The man did not stop speaking. He did not sit down unless he was asked a question. He answered the question despite that, he did not sit down! Most Americans feel unheard by their elected officials. Many of the senator’s words were reading letters from his constituents to protect Medicaid. The Medicaid program is not healthcare, it is a lifeline for millions of Americans. Senator Booker, thank you for hearing us.

    I still don’t understand how cutting 880 billion dollars over 10 years is the best path forward for America. Are The prices of eggs going to go down? One in three children who use these benefits are they going to be okay? So many counties nationwide use the Meals on Wheels program to feed older adults. Can local municipalities be ready to pick up the cost? Can they even do so? Yes, the American way of life is expensive, but we cannot save costs at the expense of the most vulnerable. Individuals with disabilities are so strong they need the right support and the opportunities to show it.

    1 Corinthians 3:10 NIV By the grace God has given me, I laid a foundation as a wise builder, and someone else is building on it. But each one should build with care.

    I understand and will fully admit that the government can be way too big. I’m a capitalist through and through. This website is where I sell my books and other works. Americans do need more money in their pocket, but this is not how to do it. When a doctor takes a sample for a biopsy, they use a scalpel, not a hacksaw! If you are going to switch to a new mode of operation, then give people a chance to learn so they can follow it. This week, Secretary Kennedy and President Trump cut a lot of positions from the Department of Human Services. That is a prerogative. What’s wrong is how they do it. Depending on the position, they’re not offered a severance package. You cannot build America without its people.

    Is there a formula that decides what jobs are needed and what jobs are not? Are these decisions being made by artificial intelligence? How do you value an American life? I want the best for vongressional representatives, senators, and president Trump. I want the best for the American people. America will not be the best if we leave others behind. The next building, a strong future, means using all Americans.

    Senator Booker gave us a call to action. A lot of us cannot go, march in Washington, DC. I have another idea post video of your day post them all over social media. Show yourself getting out of bed with twheelsgiver. show yourself with your husband or wife going to the store. If you deliver Meals on Wheels, then take a picture with the person you gave the food to. Let those in power see the smiles on our faces. Help them remember that brief moment also built America. America is more than money. America is neighbors helping each other. America is everyone doing the part. America is alive. Either we all thrive or we will not survive. Thank you for your time.

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  • My Hope List

    My Hope List

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  • Never Forget

    Never Forget

    Apologies, this was supposed to go out on Thursday in honor of those who lost their lives on 9/11 but I was unwell and could not publish it. I’m reposting this blog  I feel there are still lessons we need to take away from the Horrific events of the 9/11 Terrace attacks. We must never forget!

    Some days in life are unforgettable, no matter how hard we try. As we passed another anniversary of September 11th, 2001, I can still vividly remember where I was: sitting in my 8th-grade social studies class when the announcement came over the loudspeakers about the horrific attacks at the World Trade Center. It’s hard not to wonder—what would those who lost their lives that day think of the world we live in now?

    I remember feeling hurt, confused, and angry. Race and religion didn’t divide us—we were united as proud Americans. There was no talk of kneeling during the national anthem, and political affiliations were the furthest thing from our minds. Fast forward over 20 years, and the country feels more divided than ever. We’ve stopped listening to each other. We’ve stopped valuing each other. Back then, when people lined up to donate blood, no one cared about skin color—all that mattered was that we all bled the same red.

    The president is just one man, and we can’t place the blame for all of the country’s problems solely on him. It shouldn’t matter who voted for him; what matters is that we respect him as a fellow human being, just as every person deserves respect. We’ve lost sight of the fact that we can disagree with someone without branding them as racist or socialist. Over 3,000 people died on that day, and their deaths weren’t in vain. They remind us of the importance of our unity and the right to protest without tearing each other apart.

    September 11th, 2001, isn’t about conspiracies or advancing social agendas. It’s about honoring the neighbors and heroes who made the ultimate sacrifice. It’s disheartening to think that more than 20 years later, we still haven’t fully learned the lesson they left behind—that we must stand united as a country and as a people.

  • Remembeing Baby Doll

    Remembeing Baby Doll

    For the majority of my 20s, I wasn’t partying or drinking on the weekends. I was attending a series of habilitation day programs. I know most people don’t know what that is; don’t worry, I didn’t know what it was either until I got there. The easiest way to describe it is as an adult daycare for individuals with disabilities. This blog is not about me, but the impact “Baby Doll” had on me and those around her.

    Every so often, we come across someone whose life story is so hard to believe that part of it becomes a legend. Baby Doll was a strong African American woman. She was petite, but her heart was three times bigger than she was. Unlike most people, she was not afraid of letting the world see her heart. If she knew you, she would love you! She did not care what your skin color was. Gay or straight, that had no consequence. Every day, she hugged anyone. Oh, how I miss those hugs.

    This story needs to be shared because there’s a large sector of the disability community that has been neglected and has become less human. This makes me feel so angry. I chose the alias “Baby Doll” because that is what she called all of us who attended the day program. We knew who she was talking to just by the way she said the words “Baby Doll.”

    Those of us who can help others must fulfill that responsibility. Baby Doll was born completely “normal,” a pure product of her environment. Her own family forced her into prostitution and drug use. This did not take place in Russia or some third-world country—right here, in the land of hot dogs and the New York Yankees!

    She was eventually burned alive by the waste. After her brain was fried and her body was all used up, she was given over to the state of being an adult. When you’re given a court-appointed guardian, you can’t even get a library card in your name.When I met her, she was a shell of her physical self. Her wonderful smile had no teeth. She seldom wore short sleeves, even in the summer. Baby Doll had gray, thinning hair. She used a small collection of wigs. The nicest one she had, she wore to her funeral. 

    The Lord your God is with you, the Mighty Warrior who saves. He will take great delight in you; in his love he will no longer rebuke you, but will rejoice over you with singing.” Zephaniah 3:17

    Yet there are a few aspects of disability life of which people should be aware. Do you know what people with disabilities have in common with prisons and communal settings? The government pays for all essential parts of life. The participants are paid less than the minimum wage. Most importantly, the individuals are denied some critical freedoms. Let me be clear. We do need more medical and behavioral facilities for those with severe needs. We are past the crisis point where we need quality caregivers who deserve a decent wage. The system is so focused on protecting itself. It denies flexibility to the human element.