So often, we don’t know why we do the things we do in life. In the second episode for April, Kevin discusses why he does what he does for others. It’s not always easy or fun to sacrifice yourself for someone you don’t know but it can be worth it. Please share and subscribe to this very passionate podcast.
Tag: Disability Awareness
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A Day in the Life
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The why of my life
The other day I was asked, “Why do you choose to volunteer and advocate for others instead of looking for a paid job?” this is very simple yet complex question, at least for me. It made my heart so joyful to answer this question. I wish I could tell you I remember exactly what I said, but now that I’ve had some time to think about it, I want to give the real answer. I didn’t lie to the person who gave me the interview; I just didn’t go into a lot of detail.
The short answer is that I cannot get paid because I would lose my social security, which I need to live In addition, I am the vice chair of the New Jersey Council on Developmental Disabilities, and according to the bylaws, we are not allowed to make a profit from this position. The same goes for my position with SABE, a national advocacy board for individuals with disabilities. My days are long, but I could not be any happier.
People will never understand this, but my disability is not a curse or punishment from God. It is a platform to be the voice for others who have no one to fight for them. The other day, I had to meet with a congressman’s staff. They made me sit at the head of the table because someone else mentioned,’ Kevin had to go first; he is the rock star. I quickly corrected that I was just a nobody. I could not believe what I was doing. That night, I went to bed with tears in my eyes and a full heart.
Ephesians 2:8-9 NIV [8] For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God— [9] not by works, so that no one can boast.
A Disability advocates do not get a lot of women. I do not look good on dating apps. The most money I’ve made was a gift card for doing something unofficial for a colleague. My body always hurts at the end of the day it can be lonely because most of the time I’m the only disabled person in the room. Sometimes I do feel the weight of a community on my shoulders. When I have these moments I look to my Bible. I don’t have any weight on me because someone else is holding up for me. I’m just a tool. Do I deserve to be this tool?
No, I don’t. I don’t deserve any blessings. I’m sure I have days when I’ll complain. at the end of each day, I remembered to be grateful because I Was chosen to do the work of my big brother Jesus. That is wonderful! Friends, don’t get so caught up with your narrow view of the world that you forget to look at the big picture. There’s always someone that needs help. Make sure you do your part. Thanks for your time see you next week.
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Something in my Heart
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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.
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Public Transportation Adventures
Most people don’t think about public transportation as a national issue For the disability community, this lack of infrastructure is a major barrier to freedom. In the April 15th episode of the Purposely Broken World, Kevin discusses his experiences using public transportation and how some states are better at it than others. Hopefully, this episode will start a conversation around the dinner table that people need to have. As always, all comments are welcome.
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FDR & Me
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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.
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My Happy Place
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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!
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