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.
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 readers! The spooky season is officially upon us. Horror movies like Halloween, Scream, and Friday the 13th have been reviewed a thousand times So, I’m not going to do that. It would be completely off-brand for this blog. However, I would like to know what your favorite scary movie is. Please let me know in the comments.
Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
Joshua 1:9 NIV
Now, onto a significant milestone for the disability community—cinematic representation. In the Hulu original movie “Run,” Kiera Allen takes center stage. Since 2014, Kiera has used a wheelchair for mobility for undisclosed reasons. She became the first real-life wheelchair user to star in a major thriller in 73 years. The storyline follows a young woman with a disability navigating the complexities of adulthood alongside her mother, her primary caregiver. (Sarah Paulson) While the plot may seem straightforward, the film delves into the thriller/horror genre, bringing with it themes that, despite being familiar, earned it a “Certified Fresh” badge on Rotten Tomatoes in 2020. What sets it apart is the inclusion of disability, adding an extra layer to captivate the audience.
Navigating the world with a disability often means being part of a relatively small community. As someone who has critiqued Hollywood’s portrayal of disability, “Run” pleasantly surprised me. Its a good movie, but it also allowed me to connect with the character’s journey on a personal level. As a person with a physical disability, the burden complex is a real struggle I go through. It was interesting to see this used as a twist. Unlike the usual narrative of feel-good stories associated with disabilities, this film doesn’t aim for Oscars or the title of the scariest movie ever made. Instead, it presents itself as a compelling narrative that invites the audience to identify with its main character in a unique way.
If you haven’t noticed by now, I’m specifically avoiding spoilers. This film has gone under the radar. “Run” is a must-watch. It doesn’t rely on jump scares or special effects This is the perfect kind of Friday night thriller to have you on the edge of your seat for the duration. I have left the trailer at the bottom of this post for you to look at at your leisure Thanks for your time. See you guys next week!
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
“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
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
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
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!
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
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.
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
Is there a book you’ve read more than once? Don’t worry, this is not another shameless plug for my book. I’m going to talk about another book. Admittedly, I’m more of a movie buff than a bookworm. I can count the books I’ve read more than once on one hand. For me to do that, the book must stand out. I want to start a new series on my blog where I break down books and other sources of media featuring The disability community. I know this is not a new idea, but I never claimed to be original. For this first installment, I will be discussing the film and book Me Before You by Jojo Moyes I both love and hate this piece of fiction.
Please note that this book and film are over 10 years old, and I will be discussing spoilers. So, if you don’t want the ending ruined for you, come back and read this later Emma Clark, the female protagonist, is one of my celebrity crushes. The only reason I watched the movie in the first place was because I read the book after watching the movie. I am writing this before I purchase the audiobook. I am recommending this book and film. However, there are a few things you should know first.
Therefore we are always confident and know that as long as we are at home in the body we are away from the Lord. For we live by faith, not by sight. 2 Corinthians 5:6-7 NIV
Quick synopsis Will Traynor was once a very athletic and active young man before becoming paralyzed. His mother hires Louisa Clark to accompany him and perform some caregiving tasks, but not any of his private ones. Another caregiver looks after those. It is clear from the outset that the disabled character is depressed and missing his former life. As often happens in the beginning, they are both annoyed with each other before falling in love. After overcoming hardships and learning to trust each other with their most intimate life details, like a sexual assault that occurred to the female character, It is revealed that Will had planned and assisted suicide a year prior. Unfortunately, it does not end happily, as he follows through with those intentions.
Before I begin, I want to say I am not a paraplegic or quadrilateral. I was born with a disability. Every person is different, and every person living with a disability is different. It is not for me to say If the character is an accurate representation of a quadriplegic. I usually don’t enjoy first-person narrators. This is overused in young adult literature. Keeping this story from the point of view of Louisa not only keeps this story interesting, but it also serves as an educational piece to teach outsiders about disability. It’s okay to show that disabilities can be intimidating. Having a disability can be overwhelming at times The disability community does not serve to inspire the rest of society. No one with a disability is positive all the time. Struggles with mental health are real. People with all kinds of disabilities can have successful romantic relationships, even quadriplegics.
The idea that individuals with disabilities often harbor thoughts of suicide explains Will Traynor’s desire to end his life. This portrayal oversimplifies the complex emotions experienced by people with disabilities Just because someone has a major disability does not mean they wish to end their life. I truly believe that pieces of media like this unintentionally feed the idea That we should be put out of our misery. We are not dear on the side of the road. We are human beings with the same rights to live as anyone else.
Another stereotype the book addresses is the belief that love cannot flourish in a relationship involving a disabled person. Louisa and Will’s connection is depicted as profound and heartfelt. However, the story inadvertently hints that love can only exist in the face of pity and tragedy when one has a disability. This portrayal undermines the possibility of genuine love in such relationships.
Literature like this can inadvertently propagate negative stereotypes. When books consistently depict individuals with disabilities as trapped in despair, they reinforce biases and restrict opportunities and expectations. As responsible readers, we should approach such stories with a critical perspective and use them as a starting point for conversations that challenge these stereotypes. By doing so, we can contribute to a more inclusive society where individuals with disabilities are recognized for their unique strengths and abilities rather than being confined to harmful clichés.
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 everyone, Now that Labor Day has passed It’s time to get back to blogging. As some of you know, I took the last two months off. To recuperate from surgery and finish my next book. This is my attempt at a life update. First, my hernia surgery was a complete success with no complications. Second, I didn’t finish writing my book, but I think it’s about 75% complete. Stay tuned for further updates. Life is full of opportunities for growth and transformation. Sometimes, all it takes is a willingness to step out of your comfort zone and make small changes.
“As the body without the spirit is dead, so faith without deeds is dead.” James 2:26 NIV
The first change I made was admitting I needed help I know I’m a small-time content creator. That’s perfectly fine with me. I want to do some good and deliver a positive message. There are so many distractions and responsibilities that seek our attention that I am truly amazed when someone takes a few minutes out of their day to read my blogs, listen to one of my podcasts, or buy my books. As you can imagine, this takes a lot of time and energy. This is my part-time job, essentially. My other part-time job is my official advocacy duties, where I serve on various committees on both the state and national level. Despite what you may believe, I do not get paid for any of it. This is a labor of love. Honestly, It can be a little overwhelming for me There is one blog per week and two podcasts a month at a minimum.
I promised myself when I started this journey a few years ago that I would never do it for the money. I hate asking for money. So, after much deliberation and prayer, I decided to employ “the value method.” If you, as a consumer, find value in my work, then please leave me a tip. Now at the top of each blog and podcast You can find a link to my CashApp and PayPal. You can also support the podcast directly. Think of it as a musician on the street If you like my tune, leave some change in the hat. No one is under any obligation, and the content will always be available.
If you follow my social media accounts, I post on them five out of seven days a week. quick little videos of positive reinforcement. Some days, this was more exhausting than producing a podcast. This was the only way I knew To promote my work. So I decided to get off the social media hamster wheel. From August 1st to September 1st, I deleted my social media account. Facebook,Twitter,Instagram, and Snapchat To be transparent, I did keep my LinkedIn, but I hardly ever used it before, and I didn’t really use it in that month anyway.
I have it for my advocacy connections. For the first three or four days, Every time I Went to grab my phone, I felt a little bit weird. We, as a society, have become addicted to social media. After that, I really didn’t think of it at all. I finished a few audiobooks. I wrote three times as much in my book. That was my main goal. It was easier to be more present. I had conversations with people both in person and via text. Without Facebook, you have to find out what the person has been doing. Social media is an important part of our lives. Sometimes you do want to see pictures of your friend’s birthday party or someone’s major life event. However, 90% of it is miscellaneous and forgettable information anyway. The only reason I went back to those accounts was because I hoped one of my videos would make a difference in someone’s day.
The last change I made was more of a personal one. I’m always complaining that I’ll never find someone special in my life. So, I decided to take a chance and do something I promised myself I would never do. Get on dating apps. It’s been about 2 weeks, and I haven’t had any real connections or conversations with anyone, but I figured. Faith without action is dead, so I have to keep putting myself out there. I took the first step and let God do the rest.
Whether it’s taking a break from old habits, trying something new, or seizing new opportunities, each step can lead to personal growth, self-discovery, and positive outcomes. So, don’t be afraid to step out of your comfort zone and embrace change—it might just be the key to a more fulfilling and enriched life. I hope this wasn’t too boring of a first entry after a long summer off, but I wanted to keep you guys informed. Thanks for reading, and I will see you guys next Wednesday. Remember, podcast episodes come out on the first and 15th of every month.
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
Note: The following blog was written in 2020 based on my life experiences. There have been some major life events that have occurred regarding this portion of my advocacy journey. Before I share that, I must share this for context. I hope you enjoy it, and I will provide part two next week.
The word independence always makes me laugh. Individuals with disabilities are always pushed to be more “independent.” No one is truly independent; we all need a little help. I need more than most; there’s no denying that. I have a very good support system to help me live my day-to-day life. They help me with such things as bathing, dressing, and bathroom necessities. For me, this is not a big deal. It is the only way I know life. If and when I do anything out of the ordinary, that’s when things get a little bit more complicated.
As I mentioned previously, my life as a disability advocate was very unexpected. I’ve been presented with several different opportunities, and I do my best to capitalize on as many as I can. At this stage in my life, I want to make as much of an impact on the lives of others as possible. I want the work I do to last. I don’t want a fancy award or a statue. Just to see tangible evidence of what I have done. The proof will be seeing the smile on someone’s face. The majority of my work focuses on system change. I don’t work against the system; I work within it to come up with common-sense solutions.
I was recently given the biggest opportunity of my disability advocacy career, but I don’t know if I can do it because of my disability. Trust me, I know how ironic that sounds. The position is as follows represent seven states on a national level to advocate on their behalf. The organization is called SABE.
Self-Advocates Becoming Empowered is a national self-advocacy organization. Run by and for people with disabilities, completely independent of any political affiliation. In July 2018. I attended their national conference. I was asked to seek one of the representative positions. I would represent seven states as their lead advocate. I decided then that I would give myself two years to get myself ready and make all the right connections.
I would only have to travel four times a year to attend the organization’s meetings. The rest I can do remotely thanks to modern technology like Skype and FaceTime. The tricky part is that I have to find one person who is willing to travel with me to help with my personal care four times a year for a 2-year term limit. Not many people would trust a stranger with personal tasks like this. I can’t help but feel guilty. I always feel like I’m bothering someone in some way. There is so much planning and preparation that takes place beforehand. Most get scared off. I do not have a lot of medical needs. Getting me ready for the day and getting me ready to go to sleep are the hardest parts. It’s those little things that people take for granted. That’s one of the main reasons I started this blog. I want to raise awareness about the real lives of people with disabilities.
I’m not afraid of doing the work. Some people will be hard to deal with. I am sure about that. I still have to write up the proposal to acquire the funds I would need to attempt this venture. I know I must try. The purpose of life is to live life. I know there’s a good chance I will fail. Even if I get everything I need, there’s no guarantee I will win the election for the position. I don’t want to say, “What if?” I want to say, “I did.”
“In their hearts humans plan their course, but the Lord establishes their steps.” Proverbs 16:9 NIV
2020. I laughed while typing those numbers. The year the world changed, I spent two years calling people in different states. I would tweet their state organizations to introduce myself. To get ready for the next conference. I found people willing to do my personal care. Like everybody else, they postponed their conference, but not by one year but by two instead. 2022. In today’s world, that’s a lifetime! The disability community has always had a lot of turnover. In two years, every person I talk to will most certainly be gone.
I never say never to anything, but it’s impossible to know where my life will be by then. Planning from 2018 to 2020 was easy because the world was in its established routine. Now there is no routine. One of the main reasons I wanted the position was to travel across the country four times a year. I’ve only ever gone to Puerto Rico and Disney World. It would have been cool to see new places.
I am looking for a new opportunity to make a difference for both the world and myself. What opportunities have you not taken advantage of? What things have not worked out for you? I hope this gives you something to think about. Thank you for your time. Another blog will come next Wednesday, as usual. All comments are welcome.
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
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalms 139:14 NIV
My name is Kevin Nuñez I live with Cerebral Palsy and I cannot do the simplest tasks like tie my shoes. In my senior English class, I had to write a practice essay question for college applications. For some, I’m sure it was just a silly assignment. For me It’s something I never forgot. “If life had a reset button, would you press it? Like every big decision, they’re pros and cons, so let me give you both of them before I give you my answer.
The negatives: Lack of spontaneity, because I need help from others to do so many daily tasks, I rarely get the feeling. I’m just doing what I want when I want it. Everybody likes the idea of staying in bed an extra 15 minutes. What if you can’t get out of bed until your caregiver shows up for their shift? Feeling like a burden, I have had so many family and friends rearrange their schedules just to include me and sacrifice so much. That it honestly hurts me I just want to run away when in fact that is the last thing I can do. The disability community is the largest under-served population in the USA. That is because they lock us into a system of poverty. It’s simple, the belief is if you work you’re not disabled. That doesn’t consider so many obvious factors most insurance companies Don’t cover wheelchairs or other daily used devices. You want to strengthen to be the best person you can be the fact is you cannot. At 33 It’s no longer amusing to be single. Finding someone to share your life with is simply part of the human experience. Disability and relationships sometimes don’t mix well. Some people Will never give you a chance to see you as anything more. People have their little check boxes of what they think a partner should be. People were not designed to be put into boxes.
The positives: The kindness and generosity of others, This world can be really dark. I have seen the very best in people. I find the light and the goodness in everyone. No one is all bad, despite what others say. The willingness to not give up so many people who have “everything” Simply choose to do nothing with it. I never look to be an inspiration. However, if I make one person strive to be better through my actions. Then I have helped the world and we should all want to leave the world better than you found it. God’s blessings, I have had so many fortunate and unique adventures that would not have happened if it was not for this disability. From Being on a local radio show as a little kid. To meet with legislators in Washington, DC. I can’t say that me and God have had the best relationship over the years, but I have definitely become a man of faith. I am so grateful for all that I have. I may not have had a lot of relationships to brag about, but I have stayed friends with all them. The simple fact is If you give a person with a disability a chance. You see that the relationship is much deeper and fulfilling because we go past all the typical surface issues that most people cannot get past.
I am well aware some of you out there would gladly say that you would press the restart button. Regardless of If you had a disability or not. My point is simply this, We have to stop looking at the bad. So we can find the good. By doing this, you do not deny the bad. You are just searching for a unique perspective. Will fully admit, there is no longer a straightforward answer to this question. Some days are tough. That’s just part of life. My answer is still the same as it was all those years ago. I cannot and we’ll never wish to start my life over again.
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