2024 is shipping up to be my best advocacy year! In October, this blog reached 3ed its anniversary. The podcast will be 3 years old in January. I was honored to be invited to the White House to speak. I’m optimistic that I can finish the first draft of my second book by December. I serve on both state and National disability advocacy boards to improve the lives of my brothers and sisters with disabilities. What does all this success add up to? As far as this world goes, less than Zero. I don’t want to be Logan Paul or Joe Rogan I just want to live. I live a backward life and I love it

I have over 160 followers on this website. On average only 30 open the blogs when it is sent to their emails. About 12 folks listen to the podcast regularly. I started a bonus newsletter, and I have four subscribers. Last week, I looked in my bank account. I have more money in there than ever, thanks to book sales, and other projects I’m involved with. It’s less than $2,000 because I must stay legally broke to maintain my Medicaid eligibility. Money matters in this life how can I live?

Matthew 16:25 NIV 25] For whoever wants to save their life will lose it, but whoever loses their life for me will find it.

I did the math. I need roughly $100,000 to employ caregivers and other long-term support. This does not include rent, food, or utilities. To live as independently as possible, I estimate I would need about $150,000 a year, assuming I have no debt.

Some of my dream jobs include being a translator at the UN. The top-level translator makes approximately 54,000 a year. That’s not going to cut it. The average legislative aid salary in Washington, DC, is $ 78,000 a year. That doesn’t work either. 68,000 a year is the average salary of a paralegal in New York City. Nope, that still doesn’t work. Let’s try one more: in New Jersey, a social worker makes just under 64,000 a year at the top level.

To be clear, it is possible to work and keep your benefits at the same time, but it is purposely dangerous to navigate this system. It’s like navigating a minefield naked. For most of us, we have to call our benefits counselor twice a month feeling like the Orphan Oliver “Please sir, may I have some more?” something doesn’t add up.

It costs 20 to 25% more to raise a disabled child some people out there think that individuals like myself should not be allowed to live. I think it’s because of the financial burden. People like me just want a chance to live to show you that we can do more and be more than you ever expect because life is not about numbers it’s a journey to learn and grow every day. There is a Bill in Congress right now to raise the asset limit from $2,000 set in 1983 to $10,000. This would be a very small step toward equality but people don’t even know about it.

We have men and women fighting all over the world to protect our freedom. As Americans. Disabled Americans need to rise and have their voices heard so we can be financially free and have the same opportunities As Americans. America does employ two models of socialism. Prisons and developmental centers. The government provides all the essentials to live, but there’s one thing missing: freedom.

Where are the warriors of the Next generation to make sure that this vital population of America does not get left behind? I love my disabled life and I’m thankful for it because it’s taking me so many places and showing me the real value of life. Americans need to stop being afraid; they need to live; they need to help others live. Mr President and other elected officials help us streamline the disability system so we can do our part to take care of those who are more vulnerable than me and live a joyful American Life.

Greetings once again to all my readers. I don’t just enjoy writing blogs; I love reading them, too. Recently, I came across an inspiring post by Lily Pierce, a remarkable woman who lives with a disability. She wrote a powerful piece on how we perceive our physical appearance, and her words deeply resonated with me. I’ll include a link to the post for those interested. Lily’s post sparked an idea within me—one that I want to share today: a letter to thank my body for everything it has done for me, even when I’ve taken it for granted.

When people first see me, they may notice someone standing no taller than five feet, with little hair on my head since my twenties—but plenty elsewhere! Grooming can be awkward for anyone, but imagine having to ask for help to do it. That’s my reality. Some people may focus on the scars I carry from countless surgeries, or how no matter how much time I spend at the gym, I’ll never regain the six-pack I lost at sixteen.

I often joke that it’s only my body that’s broken—not my mind or heart. Of course, I know that’s not entirely true. But humor has always been a way for me to embrace my situation and make light of things. In a world that often values outward appearances, I can’t change societal standards—but perhaps, with this letter to my body, I can inspire a shift in how we view ourselves.

Galatians 5:17 NIV [17] For the flesh desires what is contrary to the Spirit, and the Spirit what is contrary to the flesh. They are in conflict with each other, so that you are not to do whatever you want. 

Dear Body,

Many hands have helped care for you—not just mine. So many doctors, nurses, friends, family, and caregivers have played a role in keeping you strong, and I thank you for accepting all of them. Thank you for enduring years of medication and surgeries, and for allowing me to stay as healthy as I am today. I’m grateful that those medical interventions have lessened as we’ve aged.

Thank you to my eyes for showing me the beauty in the world, even when others focus on its negatives. Thank you to my nose for savoring the smells of home-cooked meals, and to my ears for absorbing laughter, wisdom, and the sounds that make life rich. Thank you to my voice and lips for helping me speak up for others and advocate for those in need.

To my arms and legs, thank you for always trying—despite the pain you endure. Even when walking or standing isn’t easy, you never give up. And as personal as this may sound, I want to thank my “male organ”—for reminding me that no matter how the world sees me, I am a man, whole and complete.

Lastly, thank you to my feet. Though I’ve never stood fully on you, I know I would have no foundation without you.

Our bodies may not always look or function as we wish, but they carry us through life nonetheless. For that, I am deeply thankful. Thank you for reading, and I hope you have a wonderful day.

Note:

This is a Rewritten exert for my first book Confessions From Disability Limbo. Exclusively on Amazon.

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