The Advocacy Life Podcast & Blog

Tag: Commentary on Society

  • Investigating wheelchair Rapunzel

    Investigating wheelchair Rapunzel

    This week’s blog is going to be difficult for me to write. When I first started this project, it was meant to uplift my disability community and shed a light in this often dark world. I never want to bash anyone with a disability; our lives can be difficult enough. There is someone out there who is using various social media platforms to perpetuate negative narratives and victimize herself to gain fame and fortune. Alex Dacy, otherwise known as Wheelchair Rapunzel, is a disabled female living with Spinal Muscular Atrophy (SMA). She is not an influencer; she is seeking attention.

    I used to follow her on TikTok and Instagram. I am not an influencer, nor am I judging her based on her disability. She makes me sad and angry because she has so many blessings but does not appreciate them. She should be an example for people with disabilities. Instead, she is an albatross for our way of life. In 1977, Judith Heumann the mother of the disability rights movement, was on the cover of Time magazine. In 2024, our community will see negative stereotypes reinforced because of people like Alex. You don’t have to take my word for it; I have a list of sources below that will let you see for yourself.

    ' “Watch out for false prophets. They come to you in sheep’s clothing, but inwardly they are ferocious wolves. 'Matthew 7:15

    I feel it’s important for people with disabilities to support others. When I used to follow her, it was fun to see someone with a major disability going to the club and living their best life. After a few videos, her content got old fast for me because it reminded me of one of those guests on Jerry Springer. There is a medication called Spinraza that stops or severely slows the progression of her particular disability. The closest thing there is to a miracle drug. As long as it is taken daily. Alex calls it “twerk juice.” It does not take a rocket scientist to see that she is using other drugs or alcohol throughout the day. It is also clear that her content is monetized. Good for her.

    On a recent podcast, she was asked about her adult entertainment site, which I never followed. Again, not a judgment on her. Individuals with disabilities have sex. However, she cannot claim that she had no other choice and she only did it to support her daughter., You cannot have your cake and eat it too. She is blessed with a beautiful daughter who is showcased frequently in her videos. Honestly, I forgot all about her until a few days ago, when I noticed our community was divided on whether to support her or not after she posted several videos victimizing herself for having Child Protective Services (CPS) make several visits to the home.

    CPS harasses parents with disabilities. It is a sad right of passage for a new disabled mom or dad. This is not the case for Wheelchair Rapunzel and her baby’s father. They received home visits because they were high or drunk. The child is being neglected. Don’t take my word for it. Watch the videos for yourself. Her face is always bloodshot, and her partner” is smoking in the videos! One of the sources is an interview with one of her former caregivers. Alexis clearly needs counseling and to seek help. I do wish her the best, but right now she is not someone that should be followed or admired.

    There are so many real disabled content creators and influencers who show their lives in the right way. Squirmy and Grubs a man with the same disability, have a YouTube channel with his wife. I commend them for the courage it took to document the struggle they went through trying to conceive a child. I know so many disabled couples who cry themselves to sleep, knowing they cannot have a child. So many men and women just happen to have some sort of disability that is constantly ignored because people don’t take the time to see their hearts. This world is so backward. All I can say is to investigate what you consume with your time and energy; don’t just watch something because it’s trending. As always, thanks for reading. I will see you next week.

    Sources:

  • Content Creation Confessions

    Content Creation Confessions

    Happy Wednesday friends! I hope everything is going well. As you are reading this, I am currently on the way back from the disability policy seminar, and I’m excited to be in our nation’s capital, Washington, DC. I do not consider myself an influencer In this age of digital consumption, it is hard to get people’s attention, let alone keep it for any length of time. I’m just someone who tries to make a small difference in someone’s day. At first, I promised myself I would never charge anything for my creations. It started as a hobby. I don’t expect to have 100,000 followers anytime soon. I have 150 subscribers to the website. Less than a thousand followers on all social media platforms. I started this blog about 4 years ago, and the current version is about 2 years old. The same is true with the podcast. I am proud to say that I have a small but loyal following.

    ‭‭1 Corinthians 12:8 NIV‬ [8] To one there is given through the Spirit a message of wisdom, to another a message of knowledge by means of the same Spirit,

    Here’s something most creators will not admit: it takes a lot of time and energy to produce anything video, audio, or written. For a 20-minute podcast episode, it takes about an hour to record and about 3 hours to edit. My first book took about 10 years to write. My second book, which I hope to have out by the end of September, took about 3 years. Blogs are more fun to write because they’re less time-consuming,are the ones people focus on the least because people don’t like to read. For most people, this would be considered “disposable income” if they charged for their content. For someone like me, this is my income. A few months ago, I decided to start a bonus newsletter for subscribers for a small fee. I have a cash app and PayPal if anyone wants to give me a few dollars. Why does this matter so much to me?

    Since I’m on social security, I can only earn so much. I live below the poverty line. Did you know that the term “handicapped” comes from the 1600s in London, when people with disabilities used to walk around with a cap, playing games and doing tricks for spare change? As a disabled American in 2024. I kind of feel the same way. Don’t get me wrong I love what I do, and I do what I love. It sucks just because I was born a certain way and was never given a shot at a real career or a real job. I love helping others with all my heart, but part of me feels like a very handsome, well-intention Oliver Twist, saying, “Please, sir, may I have some more?”

    Most of my writings are written well in advance. So when I go to Washington, DC, even though I will always advocate for others first, This year I’m going to advocate to raise the asset limit for individuals with disabilities so I can earn a real living without having to stuff money under the mattress like I’m a criminal. Just because I was born a certain way doesn’t mean I should be in a second class. I should have the opportunity to make a living doing what I love. I will never ask for money, but if you’re interested, all the links are above. If you don’t like my content, that’s fine, but I guarantee you that you do follow some other small content creators, so please support them. Thanks for reading this, and I hope to see you guys next week.

  • Life Tips

    Life Tips

    Hello Readers,-

    So this week really got away from me It took me a long time to produce the next podcast, which will be released on April 1st. All I could think to do was come up with this quick list of tips to have a good life. I hope you guys enjoy it. As always, all comments are welcome.

    ‭‭Proverbs 1:5-6 NIV‬‬ [5] let the wise listen and add to their learning, and let the discerning get guidance— [6] for understanding proverbs and parables, the ayings and riddles of the wise.
    • Develop X-ray vision: Never take things at face value; the best-dressed man may be the biggest snake. The man who is smelly and brash may be the one who helps you the most. What good is it to dress up on the outside if you’re dead on the inside?
    • Give what you can and save what you can’t lose.
    • Regardless of what religion you follow, it’s safe to say we reap what we sow. So be careful with seeds you plant.
    • Always help when you can; don’t put it off for another day, because one day you will need the same help.
    • Knowledge is power, but with significant power comes great responsibility. So use it wisely.
    • Never stop learning, but realize you will never learn it all.
    • No matter how bad it seems, someone has it worse. What you throw away, someone else is already looking for.
    • Each breath we take is one we can’t get back, so remember to leave something good in this world for others to find after you have left it.
    • Learn the difference between living and existing.
    • Laugh like you never have before, and love like you always wanted to be loved.

    I know there’s a lot to unpack here, and I know that each one of these can be its own separate post. I also know that a lot of these things you probably heard before, sometimes we just need a reminder. I think that’s what I was really trying to do—just remind all of us of things the world has made us forget. Thanks for reading. See you guys next time. I love you all.

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  • The Disability Love Paradox

    The Disability Love Paradox

    Hello friends,

    Happy Wednesday to you all! Thank you once again for spending a little time with me. There’s been something on my mind lately, and I want to share it with you guys. This is going to be a bit of a controversial blog. A lot of people will not agree with this. Some people will call me an ableist. Ableism is defined as

    “discrimination in favor of able-bodied people.“discrimination in favor of able-bodied people”.

    Last week, I wrote a blog entitled The Disability Paradox. This is a very complicated sequel. There’s no nice way to say this; romantic relationships are complicated. Having a disability is also complicated. Mixing those two things is not easy. I need to say from the outset that there are individuals with such complex needs that they are not able to have a romantic relationship. That does not mean that they’re not allowed to feel their feelings and try to process them the best way they can. Remember that no two individuals living with a disability are the same, despite whatever the diagnosis says.

    Reality television has done a much better job of including individuals with disabilities in its programming. There was a man on the spectrum who won a season of Big Brother. Years later, there was another female who won the Favorite House Guest award on another season of Big Brother without disclosing her autism diagnosis until the very end of the season. In addition, there was a deaf contestant on the competition series The Circle.

    There is another reality show called Love on the Spectrum that features individuals trying to date with various intellectual disabilities. These are very real people with real feelings I don’t know if it’s the production and editing of the show, but the show comes across as very “inspirational and safe.” They want the individuals to be seen as happy and overcome all kinds of obstacles in their way. Yes, people with disabilities need more support, but the show does not focus on the long-term issues of the relationship, and how they handle those is scarcely shown. This show is designed to make the viewer feel happy. This show doesn’t feel real.

    ‭‭1 Corinthians 13:4-5 NIV‬‬ [4] Love is patient, love is kind. It does not envy, it does not boast, it is not proud. [5] It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.

    As a person with a physical disability, I feel left out. There is another show I want to focus on called Love is Blind. For those of you unfamiliar with this show, able-bodied folks meet without seeing each other; they date for a few weeks before deciding to get married. This is appealing to me because this is the only scenario where someone would get to know me and not see me as someone in a wheelchair first. I cannot hide, nor do I want to be part of myself. I just want people to learn to look past the disability first.

    I want to have a real conversation about faith, finances, long-term goals with a partner, sex, etc. Why are people with disabilities always segregated amongst ourselves? Everyone on Love is Blind is physically fit and has solid careers. The casting department was able to cover all ethnic backgrounds, but they forgot about the largest minority in the United States. It is important to show that individuals with disabilities should have romantic relationships. However, they are insinuating that they can only date others with disabilities This is not an example of inclusion but rather of exclusion. We are all part of the same human race, and we will have obstacles to overcome, regardless of ability. Real love should be what’s on the inside, not the outside. I know this is the beginning of a much deeper conversation Hopefully, someone will continue around the dinner table tonight.

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  • A Valentine’s Day Message

    A Valentine’s Day Message

    Happy Valentine’s Day! I hope this blog brings some joy to your day. Over the weekend, many couples celebrated Valentine’s Day, which is honestly my favorite holiday. Even though we should show love to our friends and family every day, it’s easy to forget in the hustle and bustle of life. That’s why having a special day dedicated to love is so important.

    To me, Valentine’s Day isn’t about fancy gifts like flowers and chocolates. It’s more about showing genuine care and support for someone, even in small ways.

    Now, let’s talk about something important: advocating for people with disabilities. Before we get into it, I want to be clear. Some people with disabilities may not be able to understand or consent to romantic relationships, and that’s okay. But for those who can, it’s important to challenge misconceptions about what they’re capable of.

    ‭‭1 Corinthians‬ ‭13:4‭-‬5‬ ‭NIV‬‬ [4] Love is patient, love is kind. It does not envy, it does not boast, it is not proud. [5] It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.

    Years ago, people with disabilities were often kept out of sight in institutions. But things are changing, just like they did for the LGBTQ community. It takes time, but education and breaking down stereotypes are key.

    Having a disability can make romantic relationships more challenging, but it’s not impossible. It just takes understanding and communication from both partners. There might be people who don’t understand or stare, but love knows no boundaries, whether one or both partners have a disability.

    It’s important to see the person beyond their disability. I’ll share links to two couples who are in integrated relationships to show that it’s possible. I promise to keep talking about this topic regularly in my blog because awareness is important, just like having accessible facilities.

    I’m sending love to everyone who needs it today, and I’ll see you next Wednesday!

    Sources:

    Roll with coal and Charisma

    Squirmy and Gloves

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  • Hope for Children

    Hope for Children

    As February begins, Kevin puts his focus on hope for children and how the future of society will go. Are children raised too fast thanks to television and other forms of media? Whose fault is it? What can we do about it? Hopefully, after listening to this, parents will be able to have a good conversation with their children Join the conversation today.

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  • Lessons From Chess

    Lessons From Chess

    @theadvocacylifepodcastat

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    Hi friends, I hope everyone is having a wonderful Wednesday. What are some of the hobbies or sports you like to participate in? I am 35 and have limited mobility due to my disability. So my options are limited. Yes, there are challenge or baseball leagues, and the Special Olympics has every sport you can imagine. I’m at the age where most other participants are either way too old or way too young. In addition, the concept of everyone getting a trophy or metal at the end doesn’t seem right to me. Most importantly, it would take 50 more steps if I just wanted to play wheelchair basketball for an hour. What if I just wanted to distract myself for a few minutes? Yes, there are plenty of video games with adaptive controllers. That truly is wonderful. However, I wanted something more realistic and a guaranteed challenge.

    “for gaining wisdom and instruction; for understanding words of insight; for receiving instruction in prudent behavior, doing what is right and just and fair;” Proverbs 1:2‭-‬3 NIV

    I recently discovered chess. I know the game of chess has been around almost forever, but it really is a brilliant game, and it has so much to teach us about life. I picked up the following lessons from playing the game, among others Have a good day, everyone. Let me know in the comments if anyone has tried playing chess and what they’ve learned from it

    • No matter how much you can or cannot move, you can still play even if someone else moves the pieces for you because every piece and square on the board has a name.
    • Chess is not for nerds! It’s a very social game you can always learn from other players. Especially in today’s world with players constantly streaming their matches. Players of all races are represented. There’s always someone waiting to connect even if it’s just to teach or play a game.
    • I currently have the lowest rating in all of Chess, but it is almost impossible to play the same game twice so you always constantly being challenged and learning a new strategy.
    • Every piece on the board has a specific role you have to see the big picture. I specifically enjoy this aspect because we get so focused in this world about what we’re doing in the moment we never take a step back to look at the whole board of life.
    • Most people when they start a plan of any kind. Get excited when they start a new project but lose interest in the middle and never get to the end. In chess the middle game is where the challenge really begins. The game will not end until the king is captured so you constantly have to keep adapting to a new scenario.
    • After you play games, you have to study your mistakes. In life people don’t want to learn from mistakes but in chess if you don’t analyze your past you can’t get better in the future.
    • Chess does not require physical strength, but strictly. Your mind and your heart working together.

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  • The Language Rabbit Hole

    The Language Rabbit Hole

    @theadvocacylifepodcastat

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    The following was an opinion piece Kevin Nuñez wrote for the Burlington County Times in March 2020. Click here to read

    I am a 32-year-old disability advocate living with cerebral palsy. I am of sound mind and spirit, and I’m inviting you to go down a linguistically inspired rabbit hole with me to start a much deeper conversation about human awareness and language.

    Before beginning, I know what I’m about to say is controversial and might raise more questions than answers. I am trying to make people aware of the way we are communicating with one another. Unlike Alice in Wonderland, we cannot wake up from this nightmare. Just like my disability, it will not disappear. This should be an ongoing conversation, with people allowed to draw their own conclusions. We should learn to understand the meaning behind words and phrases before we use them. If we look up the etymology of most words, we would find a negative connotation for most of them.

    My function as an advocate is to educate and collaborate with others to better the lives of those affected by disability. I have come to realize that I am more of a human advocate, because everyone has a disability.

    One day, I was giving an orientation to new direct support professionals (DSPs) on how to treat individuals with respect and so forth. Later that night, I was out with friends whom I have not seen in a long time. During the conversation, they jokingly used the R-word once. I did not want to break up the conversation and begin a lecture on disability and why the word is offensive. No one at the table was trying to be offensive; there was no malice behind it. I immediately cringed internally. What was I to do? I can’t wear my advocacy hat all the time. I have the right to have fun as well.

    The simple believe anything, but the prudent give thought to their steps.- Proverbs 14:15 NIV

    When the night ended, I pulled the one person aside and simply explained the situation. That person apologized, and that was the end of it. There was no need to cause a scene in the middle of a restaurant. I did not have to shame them in front of everyone. We didn’t have to stop being friends because they made a mistake. All I had to do was express myself in a calm way and make sure they didn’t forget it.

    These days, everyone preaches acceptance, but we also need to preach tolerance. People will say the wrong thing. This does not mean they should be punished for the rest of their lives. Words are tools, like hammers and knives. Yes, they can be used to hurt. They can also be used to build and create wonderful statements that can change the world. We are so quick to destroy anyone who says something we don’t like, instead of educating them to make the change.

    Comedian Kevin Hart made a joke many years ago about how he would discipline his son if he ever said he was gay or transsexual. At the last Oscars ceremony, Hart was scheduled to host. There was such a huge uproar about his statement that he removed himself. If we are going to judge every word every person ever said, then we should all put tape over our mouths and learn to communicate telepathically.

    In conclusion, language is like comedy — totally subjective. It’s not what you say; it’s how you say it. Tone and delivery matter. Think of it like this: Have you ever texted someone and then had to send another text immediately after to explain it?

    How we communicate is like driving. Everyone does it a little differently. We have all sped up and broken a rule once in a while. We may cause a major tragedy, a tiny fender bender, or get away with it.

    We can do only so much. First of all, know your audience. Find the most effective way to deliver your message. Learn to accept feedback and reactions. Most importantly, be patient with how to respond to someone’s message back to us.

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  • Finding your Belessings

    Finding your Belessings

    By David Champignon

    @theadvocacylifepodcastat

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    Hello, loyal friends and readers. It’s David Champignon. My friend Kevin is hard at work on many upcoming writing projects and has asked me to step in for a few weeks in the interim. With that said, I would like to share something that my wife Jenny and I watched on Sunday. That night we saw the movie The Blessing Bracelet on Hallmark Movies and Mysteries. To my amazement, it’s based on a genuinely beautiful story.

    A woman named Dawn had gone through a divorce and faced mounting doubt and the looming threat of foreclosure at the house where she and her son lived when a friend reminded her of bracelets she used to make. longing for something different but unsure of what exactly to do for those she loved. Like so much that happens in real life, the improvements started off slowly.

    Working at a local restaurant, she began giving the blessing bracelets to customers as a little something extra in addition to her existing great customer service skills. Part of the magic of the blessing bracelets is that they are made with four beads so that people can reflect on the four blessings present in their lives at any time of the day.

    Over time, her community, including her church, rallied around her, and she could barely keep up with demand for the bracelets. Dawn and her loving son made enough money to pay off their debt and cancel the foreclosure. To this day, blessing bracelets are a vibrant business you can order from for yourself or your family.

    What is the lesson here? While not everyone can be an entrepreneur and start a small business to bring joy and blessings to the world, the challenge is to remember the blessings we all have in life. Remember to not take things for granted, no matter how routine our lives get. Finally, remember that the people who matter in life will stick around no matter what. Love those people with all your heart and soul because those people are truly special. Have a great week, and I will see you next week.

    Sources:

    The Blessing Bracelet Movie

    https://www.hallmarkmoviesandmysteries.com/the-blessing-bracelet/about-the-blessing-bracelet

    https://decider.com/2023/04/10/we-found-the-bracelet-from-hallmarks-the-blessing-bracelet/

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  • People V. Hate

    People V. Hate

    @theadvocacylifepodcastat

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    Do people ever do little things or say little things that bother you? A pet peeve is defined as just that: ” Something that a particular person finds especially annoying.” I decided to do something a little bit different with this blog post. I want to tell you about one of my “pet peeves” to hopefully create a discussion about how people interact with each other. It bothers me when people say, “I hate people.” I can’t believe people hate every single person in the world that exists on the planet today. So, what exactly do people hate?

    Jesus replied, “ ‘Love the Lord your God with all your heart and with all your soul and with all your mind.’ And the second is like it: ‘Love your neighbor as yourself.’ All the Law and the Prophets hang on these two commandments.” Matthew 22:37‭, ‬39‭-‬40 NIV

    We live in an on-demand society. We have the world at our fingertips, with unlimited amounts of information. You can have your groceries delivered to you within two hours. You can watch any show you want anytime you want. The fact is, people, do not work the same way. It takes time to get to know a person. With the invention of social media, we lead ourselves to believe that we do know someone. Then we are disheartened when it turns out that they were not who they said they were. We no longer use social skills to introduce ourselves, now we use keystrokes. Have you ever been to a party and seen all the kids in a corner together? They communicate with each other without ever saying a word to each other. I find this to be very sad.

    We no longer have patience because everything comes to us right away. People may be rude and inconsiderate, but we no longer try to understand one another. If you think I’m wrong, answer this question Do you know your neighbor? Your best friends used to be your neighbors. I know these are just a few reasons why we all have lost the ability to consistently and effectively create a positive relationship. After reading this, I challenge you to speak to three new people in your world today. Take care, and I will see you next Wednesday as usual.

    Disability Limbo Newsletter

    I started Letters from the Limbo as a way to connect with you on a deeper level. Twice a month, I send out an email filled with personal anecdotes, professional updates (like my recent reelection as Vice Chair of the NJCDD), and the policy insights I don’t share anywhere else. This isn’t just another email—it’s an unfiltered look at the life of a disability advocate. Join my community and get an exclusive, honest look at the work that matters

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