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.
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/
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
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.
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.
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.
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.
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
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:
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
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.
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
“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.
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
Greetings and happy Wednesday! WordPress.com informed me that I have been writing this blog for four years. I relaunched it with a podcast in March of 2022 The intention was to spark conversations about disability issues, both the positives and the negatives. Lately, I’ve been feeling spiritually restless, and a recent Facebook memory prompted me to reflect. Sometimes, we all need a reminder that God is watching over us, even when faced with life’s challenges. This is especially true for the disability community, which often grapples with questions like, “If God is perfect, why do people suffer from disabilities or other conditions?”
“This is my truth: I’m broke. I have bills to pay. I will always use a wheelchair, I will most likely always be single, and people will always underestimate me. Yes, it really sucks! I choose to look at all the good in and around my life. I don’t hide from everything. I just choose not to focus on things I can’t control. You might find it dumb or even wrong, but I’m proud of myself, and I love my life.”
Personal Facebook post from 6 years ago
To address this question,I want to ask the Holy Spirit to help me speak the truth. Some have accused me of lacking humility or bragging about my accomplishments. My only aim is to leave the world a better place than I found it. I don’t hold any degrees; I have only a high school diploma. I pray nightly, seeking forgiveness for any wrongs I may have committed. Just as the song says, “This is me.” I can only speak from my experiences and give my opinions.
Next, the statement about being broke and having bills to pay: It’s straightforward. I’ve never cashed a paycheck from an employer because, as I’ve mentioned before, working would mean losing my health insurance. Unfortunately, many private insurance companies don’t cover wheelchairs, and because of my Cerebral Palsy, I will always rely on one. There’s no cure for my neurological condition, and my life expectancy shouldn’t be affected, barring other complications.
Now, the part that keeps me up at night is: Will I always be single? I’ve had a few relationships, both with disabled and non-disabled women, but they’ve been rare. It’s okay to admit that I feel lonely. There’s a space in my heart waiting to be filled. I have a small bucket list of things I’d like to do with that special person. Nevertheless, I keep putting myself out there because I have faith that someone is waiting for me.
“The Lord said to him, “Who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind? Is it not I, the Lord? Now go; I will help you speak and will teach you what to say.” Exodus 4:11-12 NIV”
However, there’s something special about having Jesus in my life. It’s like having a friend who’s always there to make those empty spots go away. Just knowing that Jesus is with me helps me feel better when things are tough. So, even when life gets hard, I remember that Jesus is like a comforting blanket, filling those empty spaces with his love and warmth.
Yes, it’s tough. If I dwelled on all the things I can’t do for myself and how challenging my daily life is, I’d likely go insane. No medication or doctor in the world could heal me. So instead, I choose to focus on the little joys in life—the aroma of food cooking in my house, the sound of my brother’s laughter, texts and calls from family and friends, and checking my emails for messages from my advocacy colleagues. Negativity surrounds us daily, but the key is to seek out and embrace positive moments.
I always welcome comments and encourage anyone reading my posts to share their thoughts. Some may see me as a naive optimist, and that’s perfectly fine with me because it means you gave me the chance to show you more than meets the eye. I genuinely believe that God has a purpose for me and for all of us. Thank you for your time, and may God bless you. Thank you to my small but loyalFollowers for following me on this journey. If you feel so inclined please share
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
Many people think that when you get a wheelchair, it’s yours until you outgrow it or someone gives you a new one. Hi there, and thanks for supporting this little blog! I know my recent posts have been pretty serious, so I thought I’d share a fun story today. You see, any wheelchair, no matter what type it is, is actually a machine. And like all machines, they can break down and need fixing.
One rainy Saturday afternoon, my brother and I decided to go to the local mall for some fun. Normally, we can go wherever we want, but because of the rain, we decided to catch a movie and walk around with our caregivers. While I was browsing a store, my wheelchair suddenly stopped. It had been charged up the night before, and there were no problems leading up to this. There I was, stuck next to a display of designer watches that I could never afford—I’ve always wanted a genuine Omega watch with a gold wristband like James Bond! Luckily, all power wheelchairs have a manual function for emergencies. But what puzzled me was that the lever to activate this feature was stuck and wouldn’t move all the way. I was basically stuck in one spot, like a part of the fancy watch display.
In their hearts humans plan their course, but the Lord establishes their steps. Proverbs 16:9 NIV
With no other choice, we had to call my dad to bring my backup wheelchair, which hadn’t been used for years. We only saved it for emergencies and when we traveled because it could be folded up and taken with us easily. I watched as my dad struggled to move the damaged wheelchair inch by inch until he got it into the car. It turned out that one of the motors had worn out beyond repair. Here’s a fun fact: I learned that day that my power wheelchair has two motors. Insurance wouldn’t cover just one motor replacement, and they told us I could get a new wheelchair in six months. So, I had a decision to make: either replace both motors and lose my chance at the new wheelchair I was entitled to or use a loaner until the time was right.
Something you might not know about a loaner wheelchair is that it’s not like when your car breaks down, and you can choose from different car models to use. Wheelchairs are made to fit each person specifically, so they do their best to find one that fits you from what they have available in the shop that day.
Until they put together my replacement, which I would use for the whole six months, I had to sit in a chair that Hannibal Lecter might have used to scare his victims. You can see it in the picture at the top of this post. For most people, this would be a big inconvenience, but for me, it was just another day with my wheelchair. Once again, I hope this story helps you understand what life is like for people with disabilities and makes you see things from a new perspective. Thanks for reading, and I hope you have a great day ahead!
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
In the first episode for September, Kevin is excited to interview Ms.
Brandy Rosly is an excellent disability advocate. She shares her story about disability and dating. What it was like to be married, divorced, have kids, and marry again all while being blind. She goes to the gym and drives a car. This is a story everyone needs to hear. Please share it with as many people as possible—links to support the podcast are below.
Order Confessions from Disability Limbo here:
https://www.amazon.com/Confessions-Disability-Limbo-Commentary-Society-ebook/dp/B09B81DLZS?ref_=ast_author_mpb
Support the podcast with a monthly sponsorship.
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Have you watched The Matrix? It might seem like just a cool sci-fi movie, but it’s actually way deeper. Beyond the awesome effects and action, it has important ideas about our lives and why we’re here. So, stick with me as I explain. Don’t worry, I won’t give away any surprises from the movie because it’s been around for more than 20 years. If you haven’t seen it by now, you really should.
Here’s the quick version: The main character, Neo, gets pulled out of a fake world called the Matrix. The twist is that the fake world is the world he’s been living in all his life. He’s told he’s the hero who will save everyone from machines ruling the world. When he is awoken, he doesn’t understand why his eyes hurt. They hurt because he simply hasn’t used them before.
As someone with a disability, I find this concept awesome. Who wouldn’t want superpowers and to save the world, right? For me, it’s not about flying; it’s about simple things like standing up to pee. Recently, after a tiring day, My body was in a lot of pain, so I took a break to relax. This is rare. I’m always on the go. or at least my mind is. It made me realize that we often don’t really use our brains to their fullest. We only use 10% of our brain’s power. I imagine what we could do if we focused more on our thoughts and feelings.I’m not saying we should ignore our responsibilities and disappear. I’m just saying that sometimes it’s good to take a break.
“ ‘If you can’?” said Jesus. “Everything is possible for one who believes.”
Mark 9:23 NIV
Neo had to believe in himself and make a choice to be a hero. Similarly, I choose to see myself as a person, not just a disability. I believe one day someone will hold my hand without thinking twice. We’re always bombarded with distractions. But we can choose to stop and see beyond what’s obvious. If we want things to change, we need to believe in something different. The door is open, but we have to step through it. Thanks for reading. I love all of you.
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
The Advocacy Life Podcast & Blog 