Tag: Disability Awareness

  • Disability and the American Dream

    Disability and the American Dream

    Whether we like it or not, 2024 is a presidential election year. Now that we are most likely faced with a rematch, Americans will have to make a choice. It’s fair to say that President Biden has had his share of critics. His first term is not even over, but I don’t think many historians are going to put him in their top five of the best US presidents. I know I’m a few months early, but as a disability advocate, I have a different perspective. There are issues that matter to me that most people don’t think about. Most people don’t recognize disabilities until they’re affected by them. We finally have a president who has seen this underrepresented community.

    “provide for the common defence, promote the general Welfare, and secure the Blessings of liberty.”

    free and both of the US Constitution

    Biden became the first president to improve the lives of people and families with disabilities when he vowed to support Home and Community Based Services (HCBS), which includes long-term services and supports. (LTSS) People with disabilities should live in their communities in the least restrictive environment. For some people with disabilities, they are locked away and forgotten. We must serve and protect those who are most vulnerable. Some may want us dead. We all have the same right to live.

    ‭‭Exodus‬ ‭14:14‬ ‭NIV‬‬ [14] The Lord will fight for you; you need only to be still.”

    I am a capitalist. It is maddening to me that just because I was born with a disability, I am forced into a system of poverty. There is nothing wrong with being broke. What is wrong is that I, as an American, don’t have a chance to change that. The social security asset limit set in the mid-1980s has not changed. Under this administration, there has been serious discussion about raising it. I cannot have more than $2,000 in a bank account, so someone else can pay for my $50,000 wheelchair. How does that make sense? I want to live my American Dream, not exist off of the backs of others. There is nothing like going home knowing you earned that money.

    Emily Voorde probably won’t be studied in history books like Kamala Harris. Voorde was the associate director of public engagement for just under 500 days. For the first time in my life, I saw someone who looked like me in a real position of power. She was not there just to be a token, but to actually make change.

    Most Americans don’t realize that we still don’t have marriage equality in this country. There is still a marriage penalty for those with disabilities. This president may stumble with his words from time to time, but I’m confident he would support eliminating this obscene restriction so people can love regardless of their abilities.

    I certainly don’t agree with all of the Biden administration’s policies. He still has more proof. The work is still not done. However, he is the first president to give me, as a disabled American, hope for my American Dream.

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  • The Dream Job

    The Dream Job

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    Hello, my friends, I hope you guys are having an excellent day. We all have dreams. Cinderella said it best: “A dream is a wish your heart makes.” Without a dream, we cannot have goals. Every goal starts out as a dream or idea. There are so many people out there who are “dreamers,” but there are very few who do anything about it.

    I’ve never wanted to be an NBA star or an astronaut. One of the restrictions of my disability is that I cannot have a ”dream job.”. To be specific, I do not have a job. Anyone can dream. Now that it is January 2024, it is officially election season.

    Regardless of which side of the political spectrum you fall on, there will be an election in a few months.

    ‭‭Colossians‬ ‭3:17‬ ‭NIV‬‬
    And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him.

    My dream job is to have a job working for an elected official. Disability should not be a partisan issue. Every American should have the right to work and earn a living. Why do my circumstances automatically put me in a system of poverty? The disability asset limit sits at $2,000 at any one time. That limit has not been raised since the mid-1980s. The cost of raising a disabled child is 20 to 25% more. There is no official disability tax, but I certainly feel it.

    No matter how significant the medical diagnosis is, everyone should feel like they have a purpose. Everyone should be able to dream. There is currently legislation to have the asset limit raised to $10,000, but it hasn’t gotten much public attention, so it really hasn’t gotten anywhere. My population just wants to do their part,pay their taxes, and contribute to our society.

    America is the land of opportunity. America is the land of dreams. America started out as a dream. Whoever sits in the overall office come January 2025, don’t forget the American citizens with disabilities. We just want the chance to turn our dreams into reality, like anyone else in the land of the free.

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    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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  • Spiritual Breakthrough

    Spiritual Breakthrough

    Hello readers, I hope everyone had a safe and happy holiday season. Thank you for spending a few minutes of your busy day with me. I had a really nice moment that I want to share with you all today. Before I do, let me just give a quick recap of who I am and my mission for this website, in case I have any new visitors.

    My name is Kevin, and I’m a Puerto Rican male living with cerebral palsy from New Jersey. I serve on various state and national boards advocating for people with disabilities. The purpose of this website is to create conversations about faith, society, and disability. The Purposely Broken World produces two episodes a month. On the 1st and 15th of every month. With the accompanying blogs every Wednesday. In addition, every so often, I have a few contributors that add to the website. For example, Miss Betzy Lee hosts the Living the Extraordinary Life Podcast.

    I will never charge for any work produced on this site. If you enjoy it, please leave me a few dollars in my Cash app or PayPal. There is also a link to support the podcast directly. Think of me as a musician just playing a song on the street. All links are above every post.

    As a writer, I’m always finding myself in front of a keyboard, typing my way through an idea. It may not surprise you to find out that I have a journal where I write letters to Jesus. Essentially, they are my prayers. On rare occasions, I share them with a friend. After reading it, I was asked a simple question: “Why don’t you ask God to help you walk?”

    This might sound naive or even strange, but I never gave it much thought. Once, when I was down the Atlantic City boardwalk, two inebriated gentlemen asked to pray over me. I didn’t want to be rude, and prayer is always good, so of course I said yes. They prayed that the demon would leave my body so I could walk. This was years before I was saved, so I didn’t take it seriously. Truthfully, I thought it was a bit rude. After all, they didn’t even say my name when they prayed.

    I will not lie my disability can be exhausting. People think it’s all about not walking and not being able to do stuff. There is no day off, which can be annoying, but it is what keeps me up at night. Even the best mother has been known to hide in her bathtub for a few extra minutes. Any dad will admit that they have stayed in the driveway of their house just to finish a song before going in. I can’t go for a run when I feel stressed. Physical therapy is not the same thing as a workout at the gym. Like most people, when I pray, I ask for my family, my friends, and a loving partner to accept me. Here is a fact: God is not a genie. One of the biggest challenges as a Christian is accepting his will over your own.

    I do not believe that God is not punishing me. I don’t believe I deserve to walk. My life purpose is to accept the gift of grace he’s giving me. I don’t have perfect faith. I also know that I don’t need to have perfect faith. I realized by thinking about this simple question that I’m not the man I used to be, nor am I the man I want to be. I think a lot of people like to pretend and lie to themselves about how strong they are in their faith as if they could show it off on Instagram. It’s okay to say you don’t understand God’s plan right now. It’s okay to say I’m willing to be God’s miracle. A miracle is more than just splitting the sea. It’s answering a text from my friend. It’s buying someone dinner. It’s doing a Bible plan with a friend. Faith is laughing until your ribs hurt. Faith is not being afraid to ugly cry.

    I can’t say I’ve ever seen myself walking down the street. However, I never thought I’d be going to Washington DC, regularly to be the voice for others. I just made the arrangements for my next trip in April. I know I’m going to dance with Jesus one day. That’s what faith means to me. At the age of 36, here’s my new prayer.

    ‭‭John‬ ‭9:1‭-‬3‬ ‭NIV‬‬ [1] As he went along, he saw a man blind from birth. [2] His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” [3] “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.

    “Jesus,

    My Lord and Savior. The keeper and protector of my faith. It would be wonderful to run, jump, and take showers by myself. If you’re willing, may I be healed physically so I may be able to do things like everyone else? So my life won’t be so hard.

    More importantly, may I be healed spiritually. So that I may be a miracle for your glory to help others. My life may not be easy, but because of this journey you gave me, I’ve done more than I ever thought I would. I’ve surprised so many people, including myself. Keep the devil from me so I may continue to thrive. My life can get lonely, but I know that with you by my side, there will never be a moment alone. In the name of Jesus Christ, I say

    Amen

    Thank you to anyone who took the time to read this very personal testimony. Have a good day. Tell me in the comments: What do you pray for?

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  • A “Walk” in a Park

    A “Walk” in a Park

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    Greetings,. I hope everyone had a very nice Thanksgiving and is still eating leftovers. If you don’t like them, then hopefully it’s not too much. The important thing is that we don’t waste food.

    Is there one moment in your life that just makes you smile? This is something I’ve been wanting to write about for a long time. I know this will not make sense to a lot of people, but I went on a walk with God. This is another blog about my spiritual growth, so if you don’t want to read it, I won’t take offense. However, please scroll down to the bottom for a special announcement.

    Due to the global pandemic and my disability, my brother and I did not really leave the house for the majority of 2020 and 2021. I did not see family or friends. My family all got together and decided to splurge on a cruise for the holidays. The Allure of the Seas by Royal Caribbean The idea was to start 2022 off with a bang. Try to put all this pandemic sadness behind us. It’s easy to talk about how great the lobster and beef Wellington were. Being sunburned and peeled like a lizard in the Caribbean is not my greatest takeaway from this vacation. In the middle of this cruise liner, there is an actual park filled with flowers and bird noises. For someone who only made it as far as the backyard and a few doctor’s appointments, this was mind-blowing. You don’t have to take my word for it; click on this link to see it for yourself A central park in the middle of the ocean. Still don’t believe me? Take a good look at the picture In the future image of this post.

    This may surprise you, but I don’t spend a lot of time on my own. Some mothers may spend a little extra time in the bathtub with some candles just to relax. I don’t get that because I need help in the shower. I can be left alone for about 4 hours until I have to pee. If I’m honest, that’s the best-case scenario. I have to be doing something and not drinking anything. Having diabetes is a real pain. When I was a kid, I would hold it only because I could. Anyway, back on the ship. For a few minutes, I found myself scrolling through this park. For the first time in what felt like forever, I felt peace and freedom! What would you do in this moment? I rode around and thanked God. People think they have to go on a road trip to discover him. As I’ve said before, God is accessible; he meets you where you are. I know I must have looked completely insane to everyone else who was strolling by. I was in the middle of a conversation.

    This ship had multiple decks with very accessible elevators. One of my most irrational fears was riding in an elevator by myself. I could get stuck. What are the odds that it will be empty on a ship full of people? It was! I hit the button and went down to meet my family After my conversation was over, I was so full of God’s grace and love that I didn’t even notice until after. We don’t always recognize the little moments that change our lives. The Holy Trinity is not a group of genies. Our circumstances don’t always change, but our perspectives can. It’s more important to recognize the interior change than anything on the outside. The same God that does big things also does small things. The same God that is in a house of worship is in your heart. Don’t forget to look in there also. Once again, I thank you for reading. Please leave any comments.

    A special announcement:

    This is my last blog for 2023. Think of it as the season finale of a good TV show, not a goodbye I will be returning in January with more podcasts and blogs around January 15, 2024. If you like my content, click on the links to support me. I hope you have a blessed holiday season and see you all next year!

    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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  • Moments of Freedom

    Moments of Freedom

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    What do you do when you’re alone? When do you feel free? When do you feel peaceful? These are the questions Kevin tries to answer in his final podcast for 2023. This is a love letter to his supporters. This is an inward perspective about the restrictions of his personal disability. If this doesn’t change your perspective on disability, then honestly, nothing will. More information about the podcast and blog is below. All comments are welcome.

  • People with Disabilities under Surveillance

    People with Disabilities under Surveillance

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    Imagine someone proposing to install cameras in your home without your consent. You’d likely object strongly, and rightly so. Now, consider a piece of legislation, S1897/A2483, known as Billy Cray’s Law. The New Jersey legislature is aiming to introduce monitoring devices in group homes and community-based settings for people with disabilities. As Kevin Nuñez, I want to clarify that my opinions are my own, shared to shed light on an often overlooked issue.

    The origin of this legislation lies in the tragic passing of Billy Cray, who was found dead in a group home closet. Recent articles, such as the one highlighting the push for cameras in group homes, add a layer of complexity to an already contentious debate. Another piece examines the ongoing discourse surrounding whether cameras would genuinely make group homes safer or if they compromise residents’ privacy.

    Financially, the burden on providers is immense. The strain on the disability care system has been building for a while and has reached a breaking point, made worse by current issues. Caregivers, the backbone of the system, already face difficulties. Constant scrutiny undermines the trust crucial for effective care.

    ‭‭Proverbs‬ ‭28:6‬ ‭NIV‬‬ Better the poor whose walk is blameless than the rich whose ways are perverse.

    Particularly troubling is the provision allowing monitoring devices in bedrooms and at the entrance to bathrooms. If any individual or their family does not wish to be recorded, they must move. This is a forest evacuation. This “choice” is more illusion than empowerment. This bill aims to protect the most vulnerable, but instead, it takes away freedom for all individuals. The disability population is made up of people. Please stop trying to fix the system with a one-size-fits-all solution.

    In a time where awareness is crucial, I encourage everyone to conduct their research, form their opinions, and engage in discussions about the potential repercussions of Billy Cray’s Law. It’s not just a matter of legislation; it’s about the well-being and rights of an often marginalized community. The recent push for cameras in group homes, coupled with the ongoing privacy debate as explored in the linked articles, underscores the need for a nuanced approach that balances security with respect for personal privacy.

    Sources:

    https://nj1015.com/after-man-was-found-dead-in-closet-a-push-in-nj-for-cameras-in-group-homes/

    https://www.nj.com/politics/2023/01/would-cameras-make-group-homes-for-disabled-people-safer-debate-rages-over-privacy.html

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    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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  • Everyday Personal Questions

    Everyday Personal Questions

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    Hey there, folks! I hope you’re all having a great day. My last few posts have been serious. I wanted to have some fun this week. Today’s blog post is all about challenging some common misconceptions that people have, especially when it comes to disabilities. My goal is to connect the disability community with everyone else out there. I have to admit, it’s a bit nerve-wracking to share this, but when you’re talking about life with a disability, honesty is key. So, let’s dive into three questions that I often get asked.

    ‭‭Ephesians‬ ‭5:15‭-‬16‬ ‭NIV‬‬  Be very careful, then, how you live—not as unwise but as wise, making the most of every opportunity, because the days are evil. 

    How do you pee?

    People often assume I use catheters because of the lack of sensation, but having Cerebral Palsy doesn’t necessarily mean I can’t feel. Using catheters can be uncomfortable and increases the risk of infections, so I opt for a urinal bottle. It’s a straightforward process—my caregiver helps me out, and I go about my day.

    How do you poop?

    This question is a bit tricky because asking for help isn’t easy. When I’m placed on the toilet, I can balance myself, but for the rest, I rely on someone close to me to assist. It’s a vulnerable situation, but knowing they care makes it easier to handle. It’s a bond we share, and it’s part of my daily routine.

    Does your junk work?

    Yes, it does. I have a fully functional system. This question comes up a lot, and I’m always cautious, especially when someone sits on my lap. It’s not uncommon for them to be surprised, but just like any other couple, we figure out what works for us.

    I get that these topics might make you a bit uncomfortable, but that’s okay. The point is to shed light on different experiences and break down misconceptions about disabilities. It’s cool to ask questions, just be mindful of who you’re asking and remember that everyone’s experience is unique.

    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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  • A Different Look at Disability

    A Different Look at Disability

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    Hey there! I came across this fascinating article by Javier Robles, a respected figure in the disability community. The opinion piece challenges readers to discover a more realistic definition of disability. Dive into the thought-provoking insights shared by this Rutgers professor. In a world where we often have fixed ideas about disability, this article is like a friendly push, asking us to question what we think we know and see things in a new light.

    Robles guides us through the world of disability, helping us understand it better. He asks us to think about how society sees disability and encourages us to understand it in a more genuine way. This article isn’t just about thinking—it’s a call to action. Robles wants us to talk about disability differently to challenge our ideas and make our society more understanding. It’s a chance to open our minds and be a part of a more inclusive world.

    Join Javier Robles on this journey to rethink disability. Let’s change how we see things, break old ideas, and embrace a truer understanding of disability. The conversation is starting, and it’s time for us to be a part of it. Have a good day See you guys next week! All comments are welcome.

    Source:

    https://mosaic.nj.com/commentary/2023/10/this-rutgers-professor-dares-you-to-find-a-realistic-definition-of-disability-opinion.html

    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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  • Types of Support

    Types of Support

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    After a long break, Miss Betzy Lee is back with a new podcast episode! In this episode, she discusses all the support you can give a family living with a disability. Because disability does not affect just the person but the entire family, this is a very interesting retrospective on a family dynamic that most people don’t think about. This is a podcast everyone needs to listen to or watch. Please share with your friends. If you like this podcast, please support it with a donation. It will go right to her, even though she is affiliated with the Advocacy Life podcast network. All donations made to this episode will go to her.

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    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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  • Writing  is Freedom

    Writing is Freedom

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    “Why do you love writing so much?” Hello, my dear friends! I hope you’re having a fantastic day. I had just finished writing a few pages in my book, Confessions from Disability Limbo.

    My twin brother asked the straightforward question mentioned above. Anyway, I’m getting off-topic. My brother asked because who else would willingly spend hours in front of a computer when they weren’t getting paid for it at all?

    First, because I can do it all by myself, there are very few things I can do on a daily basis on my own. Once someone gave me my laptop, “The world is mine.” Just like Tony Montana wanted. The only difference is that I have no interest in drugs or world dominance. I love having access to knowledge. When I write an empty page, it doesn’t matter if I can’t clean my backside. The cursor does not pity me, or I think I am mentally delayed. In fact, it’s quite the opposite; the page cannot fill itself. It challenges you; it needs you to leave a piece of yourself behind to be shared with everyone. If what you write does not get shared, it’s only marks on paper. The same goes for art or cooking. Don’t get me wrong, sometimes you have to do stuff for yourself, but for the most part, when you do something with your heart, it’s to be shared.

    My son, if your heart is wise, then my heart will be glad indeed; my inmost being will rejoice when your lips speak what is right. Proverbs 23:15‭-‬16 NIV

    When I try to walk or stretch my muscles, it hurts. At the very least, it’s uncomfortable. I don’t have to answer, “How did you end up in a wheelchair?” or “Do your legs hurt? I don’t mean to offend anyone by always mentioning God, but I was recently reminded of something: God will never abandon you; he always leaves you with a gift. Making a small difference is his creation.

    Even on the worst days, my body does not do what I say, and I have accidents. When my colleagues in the advocacy community think I’m a little overbearing, which honestly, I know I can be, I know I can always sit down to write and release whatever I have inside. I spend the majority of my time riding a 300-pound tank, but when I am in front of my computer, I am completely free! As always, feel free to leave comments. Thank you for letting me be part of your day. I hope to see you soon.

    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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