The Advocacy Life Podcast & Blog

Tag: disability blogger

  • 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:

  • FDR & Me

    FDR & Me

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  • 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.

  • Disabled Dating Tips

    Disabled Dating Tips

    Hey there, Today, I want to share some advice with you, even though I’m not an expert on anything specific. I thought it might be helpful to talk about something we’ve all experienced at some point: dating. But before we dive in, I want to make a couple of things clear.

    Firstly, some individuals might not fully understand or grasp the concept of relationships due to their disabilities. It’s important to be mindful of this and ensure their protection. This post isn’t aimed at them.

    Secondly, I didn’t start this blog to find dates. My goal is to break down barriers related to disabilities, and dating is a topic that often sparks controversy. Lastly, disabilities affect each person differently, so not everything I say may apply to everyone. With that said, let’s jump into some tips for starting a relationship when one or both partners have a disability.

    ‭Ephesians 6:12 NIV‬ [12] For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.
    • Communication is key. Make sure to talk openly and honestly with each other. Taking care of each other goes beyond just the physical aspects.
    • Don’t Fear the Disability: It might seem daunting at first, but understanding how the disability affects your partner is crucial. Don’t let fear hold you back from building a strong relationship.
    • Ask Questions and Learn Together: Don’t hesitate to ask questions and learn from each other. Assuming things can create distance between you two.
    • Encourage Self-Independence: It’s important for both partners to maintain their independence. Constantly challenge each other to grow and become more self-aware.
    • Be Prepared for Society’s Reaction: Sadly, not everyone is accepting of relationships involving people with disabilities. Stay patient and educate those willing to learn.
    • Stay open-minded: People with disabilities often have unique perspectives. Keep an open mind and embrace different ways of seeing the world.
    • Find Joy in Laughter: Life with a disability can be stressful, so don’t forget to laugh together. Enjoy the good times and support each other through the tough ones.
    • Love the Person, Not the Disability: If you’re in love with someone with a disability, love them for who they are, not their disability. It’s an important part of them, but it doesn’t define them.
    • Seek support from the disability community. Remember, you’re not alone. There’s a whole community out there ready to offer support, resources, and understanding.
    • Sex Can Work: Yes, sex can be a part of your relationship. Just communicate openly and find what works best for both of you in a safe and consensual manner.
    • Remember, people with disabilities are just that—people. Treat them with the same respect and consideration you would anyone else. Take care, and feel free to leave any comments or questions below!
  • 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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  • The Diisability Paradox

    The Diisability Paradox

    Hey everyone! How are you doing today? I have something to share with you: I wasn’t always into advocacy. When I was growing up, I thought advocacy was just something my parents did to make sure I had what I needed from my school. To me, people who did advocacy seemed like they were just loud and not really helpful. My parents did a great job treating me like any other kid. They celebrated when I did well and corrected me when I made mistakes. They made sure everything at home and everywhere else was set up so I could do things on my own, like having a low bed I could easily get in and out of.

    My family accepted my disability because it was all they knew about me. I even played baseball with other kids who had disabilities. But my family also knew that the world wouldn’t always make things easy for me. They enrolled me in regular classes at a public school. That’s when I learned about what I call “the Disability Paradox.”

    Advocacy is about teaching people and changing their minds about things they’re not used to. Even though we have laws like the Americans with Disabilities Act (ADA), it doesn’t mean everyone with a disability is treated equally. Think about it: When a mom is expecting a baby, she hopes the baby will be “healthy.” But what does that mean? Why should having a disability be seen as a bad thing?

    Did you know that Franklin D. Roosevelt used a wheelchair because he had polio? He hid it by using special braces on his legs, even though it was really painful. But even now, many people with disabilities still feel like they have to hide who they are. People have done amazing things like going to the moon and building tall buildings, but there are still a lot of people with disabilities who don’t get the help they need.

    We talk about big issues like climate change, but sometimes the solutions don’t work for everyone. Imagine not being able to drink a lemonade on a hot day because of a ban on plastic straws. This is something that could’ve been avoided if people with disabilities were included in the decision-making process.

    We’re not just here to inspire or be pitied. We’re part of society just like everyone else. But why don’t we see more people with disabilities in positions of power? We’re more than just a feel-good story during prom season.

    Lots of people have disabilities, but society often sees us as broken and needing to be fixed. But we’re not broken. We just need the same chances as everyone else.

    This is just the beginning of many conversations we need to have. It’s okay if you don’t understand at first. Just listen and learn. Once we all know better, we can all do better.

  • American Awareness Preview

    American Awareness Preview

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  • Why I Love Wrestling

    Why I Love Wrestling

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  • Life Update February 2024

    Life Update February 2024

    Greetings readers, are you ready for spring? I know it seems kind of far away. I’m writing this with only a few days left in February. There is still a cold chill in the air. Although spring training games have officially begun, warmer weather must be on the way. I have observed several bloggers doing this by providing their followers with updates on their activities. I wanted to share my exciting upcoming projects with everyone to encourage them that anything is possible, even though it always seemed a bit silly to me. Hey, every few months, the president gives a State of the Union. I may not be the best writer in the world, but I can promise it’ll be better than that.

    ‭‭Mark 9:23 NIV‬‬   “ ‘If you can’?” said Jesus. “Everything is possible for one who believes.”

    Let’s start with the health stuff. As of now, I have no major health concerns or upcoming medical procedures. This is really cool because last year I had two surgeries: a hiatal hernia removal and an endoscopy. The hernia revealed a whole bunch of polyps in my upper stomach that were noncancerous. When you have a disability, it always seems like there’s some weird medical thing on the horizon, so it’s nice for now to just enjoy the sunset.

    Next update on my advocacy career. I now represent seven states on a national board of directors run by and for people with disabilities. The organization is called Self Advocates Becoming Empowered or SABE click here to read about my initial reactions to joining this organization. For now, I can say it is the most challenging but thrilling adventure of my life. Helping others is what I was made for. I don’t even care about traveling across the country. Truth be told, some days I’d rather be home in bed. I don’t do this for prestige. The day it becomes about that is the day I leave people with disabilities. They should need to be at the table to make a difference.

    Finally, I want to recommend something that has nothing to do with disability at all. It’s a very fun and entertaining book called Mox. It is the personal memoir of professional wrestler and sports entertainer John Moxley. Yes, wrestling is partly staged, but they’re still real athletes trying to entertain you. This book teaches you about life in a very different way. You can turn your brain off, but some important nuggets will sneak in there.

    I know this is a different kind of blog. I hope you guys still enjoyed it. Thanks for your time, and have a great day. I will see you guys next week.