The Advocacy Life Podcast & Blog

Tag: Disability Awareness

  • Toes in the Sand

    Toes in the Sand

    I want to wish all my readers a wonderful Wednesday. for this week’s post, I decided to share an excerpt from my first publication Confessions From Disability  Limbo  Available exclusively on Amazon Please enjoy see you next Wednesday. I welcome all comments Good and bad.

    There is a question that every person with a disability gets asked a few times in their life. “What would you do if you had an entire day without your disability?” The first thing I would do is get up as early as possible because I know I would need every minute. I would stand up and use the bathroom all by myself. It always felt a little emasculating to pee sitting down to be perfectly honest. Then I would get dressed and find a baseball glove and throw some pitches on the mound. I have no interest in batting. Just let me throw the ball, to get rid of all of my frustrations. Next, I would get in the car and listen to whatever music I wanted, because no one could change stations but me. I would drive to as many friends as I could just to give them hugs. Something that no one realizes is because I’m sitting down, I’ve never actually hugged someone. I always have to wait till they give me one. Make a quick stop at the beach next, just to feel the sand on my toes. 

    The last thing I would do is get all dressed up and go dancing. This is what I want most of all. I would find the prettiest girl on the dance floor and dip her just like they do in old movies. I know what you’re thinking. “You could go dancing now.” I have taken my wheelchair out on the dance floor many times. But I want to go to a club and dance all night. Even though I have tons of wonderful staff and Friends I have nobody to go to stay out all night with and just dance. I would dance until the last minute until I fell because the 24 hours had expired. Then I would get back to my chair with a gigantic smile on my face.

  • Stand and Hug

    Stand and Hug

    “Can you stand up?” That’s something I get asked all the time. So let me answer the question once and for all. The answer is yes and no at the same time. I can bear my weight which creates the illusion that I’m standing but in reality, I can tip over at any moment once someone places me in that standing position. The only way I can stand semi-independently is if I’m holding on to a grab bar or something of that nature. Eventually, my arms will give out and I will be down on the floor until someone comes and picks me up. Let me be clear, when I say I am bearing my own weight in this case it means that I’m doing the work my muscles are sustaining my body mass in this position. Someone still needs to help stabilize me. They should not have to exert any effort at all. The ironic thing is so many people in my life have never seen me do this activity. I only do it when I am about to transfer or in some therapeutic setting. You don’t need to be a physical therapist or a caregiver to get me into this position. It just takes a lot of practice, not skill. The practice is just confidence-building for the other person to realize you are not going to drop me and we really can’t hurt each other. The cool thing about this activity is that it is in the perfect position for me to hug others.

    Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Philippians 4:8 NIV

    Something people don’t realize is because I’m always sitting down I can never give the people I love a gentle embrace. I always have to wait for them to give me one. People know me in one of two ways: a loudmouth obnoxious joker or a constant professional looking for the next opportunity to advocate for others. People are so used to seeing me in a seated position they don’t even think twice about seeing me stand up. The look of shock and horror I receive when I ask people “Can you send me up so I can give you a hug” never gets old. Sometimes I don’t ask because I know they would feel uncomfortable. That’s one of the reasons why I choose to publish this. We live in a world where showing affection is often wrong and frowned upon. So many people require simple human contact. These are the people I’ve always wanted to hug but never have.

    My parents, step-parents, and grandparents have all felt my embrace since they have all transferred me at one point or another. So even though I love you all very much this list is not for you. Thank you for your strong and kind hugs throughout the years. Please remember like always the order doesn’t matter because I love them all in one way or another.

    First, I owe so many hugs to my little cousins. I usually only went to Puerto Rico on vacation and I was so much older than most of them. A lot of them have never seen me without my wheelchair. 

    Next would be without a doubt my colleagues at the New Jersey Council on Developmental Disabilities becoming an advocate changed my life. Some of my colleagues watched me grow up in front of their eyes. I would give every one of them a hug. I know standing up in the middle of a board room it’s probably not the most professional thing but I think if I ever really did this they would make an exception. 

    Both of my siblings are next, I have a twin brother with a similar disability because we’re both sitting down most of the time. I’ve never hugged my brother. I am a notoriously non-crier but  I’m pretty sure this one would make me a little Misty to say the very least. Picture it living with someone for over 30 years and never hugging them.  My little sister who is no longer little has now gone off to college and even though she is “normal” she never actually stood me up. I have no doubt she can do it since she has seen it done a thousand times. It’s just one of those things we never got around to. She has never come into the house or left the house without giving me one. I just think I owe her one now.

    Finally, there’s one person I can’t wait to hug: my future girlfriend. It will be such a wonderful experience holding her and letting her feel safe and warm just before kissing her. As with all my blogs, I hope this changes your perspective on the human experience. I dare all of you to go out this week and give more hugs. Somebody will need it even if they don’t say it. Thank you for reading and see you next Wednesday.

  • Silent Warriors

    Silent Warriors

    @theadvocacylifepodcastat

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    How do you use your voice? Our voices are one gift we usually take for granted. I know I do. As an advocate I always try to remember That I don’t speak for myself, I speak for others as well if not more. We all speak too much and say things we shouldn’t. Could you imagine not being able to say anything at all? We need to stop complaining about every little thing and appreciate what we already have. I have been fortunate enough in my travels to meet some wonderful individuals who are non-verbal. They are some of the best people in this world, only we never take the time to notice. I hope this post will shine a light on those we have forgotten. This past year has been difficult for all of us. Imagine being scared and not being able to express it or fully understand it.

     This will not be the longest post I have ever written or even the most eloquent, but I pray it makes the biggest difference in changing our collective perspective. Below are 10 simple sentences that we’ve all said, but if we could never have said them at all, our lives would have been greatly affected. 

    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?” Exodus 4:11 NIV

    To my dear friends who have never spoken a word, thank you for your patience and understanding from lack of mindfulness. Please take your time reading each statement and let it flow through you.

    1. “I don’t like the feeling of this shirt.”
    2. “Why do my shoes not feel right?”
    3. “How long is this car ride? I have to go to the bathroom. “
    4. “What happened to that gracious lady who always remembered to put mayonnaise on my sandwiches? “
    5. “I don’t want to eat this sandwich, it’s so dry.”
    6. “Your hands are icy.”
    7. “My ear hurts. I really think I need to go to the doctor.” 
    8. “I don’t want to watch this TV show. Why do they always put it on?”
    9. “That person really hurt me! Don’t put me with them!”
    10. “I wish the girl knew how pretty she really was.”

    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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  • Answering The Call

    Answering The Call

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    Happy Wednesday my wonderful friends. As always I hope this message finds you well. I want to issue a small warning to my readers I’m going to talk about my spiritual growth as a disability advocate in this post, If it is not the content you are interested in please come back next week.   saying that, I might lose some followers but I’m confident whoever this message is meant to reach the Holy Spirit will lead them to it.

     Everyone has a little voice inside their head that tells them what to do, I believe that voice for me was the Holy Spirit. “It said three things, “advocate, encourage, and read. “ It’s no secret that I do not like to read. I have not read a full book since high school and I’m not ashamed to admit that.  I kept on ignoring the voice but it wouldn’t shut up! So, on a Saturday night, I downloaded a few Bible apps not expecting anything of it.

    For me, no burning bush or demons was making my head spin.  just a few words when I was alone in quiet time. little by little I found myself spending more time with the Holy Father God taking baby steps into a much larger world. This past week I took a giant step! For those of you who don’t know I was appointed to the New Jersey Council on Developmental Disabilities (NJCDD) in September of 2016. I thought this would be the greatest achievement of my life, a chance to finally be recognized. People could finally acknowledge me as a person and not another “Boy in a wheelchair” Equal to every major organization for the last two years we’ve done all of our work virtually.  We were finally able to hold our first public meeting In a hybrid format. That’s when everything changed for me.

    But by the grace of God I am what I am, and his grace to me was not without effect. No, I worked harder than all of them—yet not I, but the grace of God that was with me.” 1 Corinthians 15:10 NIV

    Over the last 2 years, I have been on countless Zoom calls being the voice for people who don’t have access to technology. The truth is in a zoom box meetings become less formal. It’s easy to be more confident in your socks while sitting in a big comfortable chair next to your bed. I believe this shutdown happened for a reason it made us all sit back and reflect. The work I do does not benefit others, It is for others. I did not earn a spot at the table with my colleagues I don’t deserve to be at the table with them. I was chosen to be there with them. I may never have a big fancy house. Girls may never let me out of the friend zone. Thanks Some days, but I know it’s for a greater purpose. Thank you,  Lord Jesus, for making me the way I am. Thank you to anyone who took the time to read this I will see you 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

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  • When One Door Closes Another One Opens

    When One Door Closes Another One Opens

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    By: Nicholas Taubenslag

    NOTE: I am very excited to welcome my very first official contributor Mr.Nick Taubenslag. You can find out more about him by clicking on the writing team. tab. Kevin G. Nuñez

    We all have issues to change and work on.  It’s the paradox of two different mindsets that we can choose to have in our lives. The two different mindsets are “The Victim” and The Champion.” It all depends on how we individually look at ourselves and our present reality.

    When in the victim one can feel several emotions from anger, depression, and sadness due to past negative experiences. The reason behind this mindset is a lack of self-confidence and limited self-worth.  Some  questions in this mindset that we  might ask ourselves are: “What’s in it for me?”  “Why have these past situations affected me so deeply?”, “Oh poor me if only I could go back in time and do it all over again.” This mindset only leads to a lot of ruminating thoughts, seeking professional help, and being stuck in a mental quicksand which could be exhausting to pull ourselves out of. The victim focuses on a selfish mindset. It’s more focused on the immediate gratification of our own individual needs.  For example, worrying about how much money one is going to make in order to survive. Over time a person in this mindset gets burnt out and loses the much-needed courage to change this mindset into a more uplifting one.

    The champion mindset is centered around treating others with kindness, love, and respect. Their internal outlook is one of self-confidence, unconditional self-love, compassion, and inner strength. Some questions that a person with this mindset might ask themselves: “How may I serve you?” “What is my life purpose?” and  “What are my goals in life?” Having this mindset tells the universe that we want to make a difference in people’s lives.

    In 2021, I had some very scary events. I was on many different meds. While I was on these meds I sunk into a deep depression. As a result, I had to move back to my parents house.  I didn’t know how I was going to pull myself out. Luckily, I had my parents, men’s group therapy,  my counselor, and a famous hypnotist to help pull me out. I tried working out among other things to try and pull myself out.  I was stuck in the victim mindset at first but trusted my intuition to heal and become a champion. 

    The lessons of 2021 were courage, help from others, and resilience. My family motto illustrates this section perfectly. It’s all about never giving up and always trying. If you try your best you can accomplish anything.

    Ever since going to New Jersey Partners In Policy Making back in 2019 I have been living my life purpose of self-advocacy specializing in expanding transportation options for people with disabilities. I also have been accepted into Jespy House, an independent living community with a social outlet already built with numerous clubs built-in. As well as mental health built-in. It’s like I am on the verge of becoming a champion in my own right. 

    What this past year has taught me is to have relentless courage, determination, and a positive outlook on life. A very wise former Admiral Navy Seal William H. McRaven Author of “Make Your Bed Little things that you can do to change your life and maybe the world.” illustrated this point perfectly when he wrote in his book “never ever ring that bell.” which is a sign of quitting. 

    In conclusion, A very wise man once asked, Are we here for a season or a reason? If we are here for a season we are like a leaf on a tree when its time is finished it just blows away in the wind, in other words, forgotten. However, if we are here for a reason we will have lived a life with genuine kindness, compassion, and action. By having this question in the forefront of our minds we can all become champions in our own lives. When one door closes in our lives,  I strongly feel it’s a huge opportunity to train ourselves to go the distance and come out the other side to open that door to a better future.

    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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  • Get to Know Each Other

    Get to Know Each Other

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    Hello everyone, let’s spend a few minutes together and escape from life. I wanted to have some fun today. I designed this website and blog to be an ongoing conversation to bridge the gaps between the disability community and the general public conversation but I can only give you one perspective. I need you guys to get involved as well, Therefore I came up with this list of questions for anyone who takes the time to read it. Feel free to answer all questions or as many as you feel comfortable.

    "My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
    Psalms 73:26 NIV"
    1. This should be obvious, can someone give me an accurate description of what it’s like to run?
    2. It always takes me about an hour and a half to get ready for the day with the help of others. How long does it usually take you to get ready for the day?
    3. What is the first thing you think of when you see someone in a wheelchair or some other visible disability?
    4. Do you put your socks on before or after you put your pants on? I never really have a choice, so I never really thought about it.
    5. I know I need help in the bathroom; I have to inform people. Why do people always announce it when they leave the room?
    6. Every parent wants a “healthy” child, what exactly is that to you?
    7. What exactly is so “inspirational” about people with disabilities?
    8. We live in a world where physical appearance is idolized, what is so hard about looking at the person?
    9. Why do people want to spend so much time alone on the toilet? Balancing is tricky for me. I want to get off of that thing as soon as possible. Why do you want your leg to go numb?
    10. How long can you stand up before you feel tired?
    11.  How long can you sit down before you feel tired? 
    12. What’s one physical activity that you’ve always wanted to do? My list is a little long.
    13. What’s one fear when you socialize or date someone with a disability?
    14. f you had my disability what would be the one thing that scares you?

    I hope this made you laugh, or at the very least give you something to think about. Do you have any questions for me? That you want me to answer in a blog? See you next time.  Have a great day.

    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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  • New advocate in Washington DC

    New advocate in Washington DC

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    Mr. Paul Aronsohn is New Jersey’s first Ombudsman on intellectual and developmental disabilities. Do any of you know what an Ombudsman is? I thought he was just another bureaucratic pencil pusher. His job is to help people and families navigate the complex disability system. I have been fortunate to work alongside the ombudsman for the last few years in my Journeys as an advocate. I admire his position constantly juggling his appointed positions by the governor’s Administration and fighting for the rights of individuals and families at the same time.

    “Do not forget to show hospitality to strangers, for by so doing some people have shown hospitality to angels without knowing it.” Hebrews 13:2 NIV

    On a personal note, this position would be my dream job. There was recently some good news from his office that I needed to share with us possible. it gave me a good kind of envy I was not asked by any organization to publish this.

    “Signed into law by Governor Chris Christie in January 2018, the Office was made operational when Governor Phil Murphy appointed the first Ombudsman a few months later.The legislation creating the Office outlines specific responsibilities, which can be grouped into 3 categories:

    Assisting individuals and families to navigate New Jersey’s system of care to get the services and supports they need and deserve;

    Working with individuals and families to identify opportunities for improving the system; and

    Helping to ensure that the voice of individuals and families is heard in a meaningful way in decisions that directly affect them as well as in larger policy discussions.”

    The Garden State does not have the best reputation on the national stage. sadly we are known more for Jersey Shore and trash TV. on the subject of disability, I believe this state has not led any significant category on a spreadsheet. Thanks to Mr.Aronsohn that has changed, We made it to the White House. The Ombudsman The President’s Committee for People with Intellectual Disabilities. (PCPID)

    “In 1966, President Lyndon B. Johnson established The President’s Committee for People with Intellectual Disabilities (PCPID), formerly The President’s Committee on Mental Retardation, to ensure the right of a “decent, dignified place in society” for people with intellectual disabilities. Since that time, PCPID has served as a federal advisor to the President and the Secretary of Health and Human Services on matters relating to persons with intellectual disabilities. PCPID promotes policies and initiatives that support independence and lifelong community inclusion. ACL provides oversight and support for PCPID.”

    I truly feel that his recommendations will be common-sense solutions to problems we have had for too long. I strongly suspect that New Jersey can make a good conclusion Thank you Mr.Aronsohn for your service. Have a wonderful day everyone. As always all comments are welcome and feel free to contact me at any time.

    Source Material:

    https://www.disabilityombudsman.nj.gov/

    https://acl.gov/programs/empowering-advocacy/presidents-committee-people

    Biden Names Picks To Serve On Disability Committee

    https://www.whitehouse.gov/briefing-room/statements-releases/2022/03/11/president-biden-announces-key-appointments-to-the-presidents-committee-for-people-with-intellectual-disabilities/

    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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  • Walk of Destiny

    Walk of Destiny

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    The following post is an excerpt from my book Confessions from Disability Limbo released in the summer of 2021. Please enjoy.

    Hello good people I hope everyone is staying safe. I recently remembered something the other day and I had to write about it. Walking has always been a very interesting subject for me. The short answer to your next question is no, I cannot walk officially. It takes so much energy to get my muscles to do stuff they don’t want to do. When I walk I usually throw up or pass out.   I can only do it in short distances and in a therapeutic setting where it is safe. The following anecdote is pretty much the only exception.

    My father’s little sister was getting married. I have lots of aunts and uncles but this seems like something I have to do. I wish I could tell you there was some overwhelming reason that drove me to do this. I just knew from the moment she announced her engagement I had to walk down the aisle. She wanted her only nephews at that point to be part of the wedding. Just like Rocky before the big fight, I spent months getting my body ready. This was going to be the longest I had ever and whatever walk.

    I was never one of those kids who hated dressing up but there was a huge difference between walking in a pair of sweatpants and doing it in a brand new suit. There is something you need to understand about my “walking.” It’s a complete illusion. I can only step with one leg, the other one drags behind, just like a zombie on TV. Then I pull the backward-facing walker to keep my balance. The secret sauce however is my orthotics that stabilize my legs into one position so they don’t buckle.

    I have no idea what I had for dinner yesterday but it has been over 20 years since this event and I still remember every step. I know for my family members seeing the 10-year-old little boy walk was more important than seeing the bride on that day. No one had ever seen me walk before.  The reversal was easy enough.

    My mother would set me up at one end and I would walk to my father at the end of the aisle. There was only one little hitch. The velcro holding my legs to the Orthotics was wearing out. Normally, this is not a big deal, it happened to me all the time. We would stop at the store and slap on new velcro. With all the hustle and bustle we never made it to the store.

    The velcro lasted a total of 3 steps before it gave away and I had no support or stabilization whatsoever. I remember the church felt huge and it was incredibly hot. I started out walking pretty strong on pure willpower. I remember swallowing just a little bit of vomit. Halfway through I hit the wall hard. I start to see black. The church seemed empty. I have no doubt I almost fell at least twice.

    “For we live by faith, not by sight.”

    2 Corinthians 5:7 NIV

    It is funny, as a child you go to church but it’s difficult to understand the true meaning of God. I know now that was the only way I made it through that walk. I must say I’m not trying to force religion on anyone but God never abandons us and this was the first time I deeply felt his presence. I collapsed in my dad’s arms when I got there. Don’t ask me how the service was. I was in exhausted hay sipping on a bottle of water. As for my aunt and uncle, they are happily married with two of my favorite cousins both ready to go off to college.

    I hope this story can show people you can do whatever you want. The disability will be there always but it does not have to stop you. Thank you to anyone who read through this all the way and have a wonderful day.

    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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  • Ensure Privacy for People with Disabilities

    Ensure Privacy for People with Disabilities

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    The following was written as an Op-Ed advocate for pending legislation in New Jersey in February 2022. Hope you enjoy and have a good day

     My name is Kevin G. Nuñez I am a thirty-four-year-old Puerto Rican male living with Cerebral Palsy. Ensuring and protecting the rights of people with disabilities is what  I have been doing my entire life.  I immigrated with my family to New Jersey at the age of four. Due to the nature of my disability, I use a wheelchair as my primary tool to live my life.  I have my daily struggles to overcome and try to live my life the best way I can. I need to use this platform to bring attention to an issue that does not enter the public consciousness when it comes to the disability population.

    Like most individuals with disabilities, I use the assistance of a Direct Support Professional (DSP) with my personal needs daily.  When I want to visit my family, I must take a three-hour and twenty-five-minute flight. Despite what Hollywood movies might have you think, the bathroom on the plane is not large enough to fit two people, or even one person using a wheelchair.  After I use the restroom at the airport, I am the first person to board the plane. I do not move for the duration of the flight.  Finally, I am the very last person to get off the plane. I can guarantee you it is not comfortable at all. By the time everyone gathers their belongings and gets off the plane another thirty-five to forty-five minutes has gone by.

     At this point, Mother Nature has my full attention. When I get to the next accessible bathroom, there is always someone in the handicap stall; peacefully stretching their legs in a space they don’t need to be using because they don’t have a disability. This leaves me with two options.  The first is to wait until they’re done and at best get a halfhearted apology. My second choice, I am forced to relieve myself in the corner of the restroom by exposing myself and urinating into a  plastic urinal bottle. Females with disabilities do not have the same luxury.

    Thanks to Assemblywoman Carol Murphy a Bill was introduced that requires business owners to put up signs on these specific bathroom stalls to discourage people from using them inappropriately. Provided there is more than one stall.  The Accessible Restrooms Sign Bill (A467/S1239) Needs to be made a priority, This is a human rights issue! It has gained bipartisan support. We are still awaiting committee review in the New Jersey state legislature. This legislation secures dignity and respect in this private moment that all humans should have.

    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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    Thank you for your response. ✨

  • Coming Back from Everything

    Coming Back from Everything

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    Salutations and best wishes I look forward to our time together. After a few months of hiatus, I decided to relaunch my blog and website. I know some of you probably wondered if I died.  I can assure you I am very much alive and I feel better than ever. Just like this website I took a few months and redesigned myself. I invite you all to please click around and check out all the features. I know there isn’t much but all the important stuff is there. I’m going to use my life as an example but I don’t want this to be a blog about “Kevin and his disability” I want to focus on the human experience and help others grow spiritually and mentally. The world is tough enough as it is  I hope for a few minutes every week, I can take you out of it.  to find a little extra something.

    "Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house."'
    Matthew 5:15 NIV

    For all my new followers here is a quick synopsis of who I am. My name is Kevin G. Nuñez. At the moment of this writing, I am 3/4 of the way to my 35th birthday. That sounds weird to say, worse to stop and think about. I want my writing style to come across as a conversation between friends. I want to talk with you as the reader not talk at you. I was born and diagnosed with a developmental disability Cerebral Palsy. It is a neurological condition That affects the spinal cord in the brain. The single gets sent from the brain down my spinal canal but somewhere along the line, there’s a disconnect. Turn a key in a car, but it dies at the point of ignition. This is the best conversion I can make. I’ve been privileged to serve on various committees on both the state and national levels to ensure the rights of all people and families affected by disability. Before you ask I have not been paid for the representation I have done to this point. Not all labor should be done for financial gain. If you want more information on this aspect of my life please check out my advocacy resume on the about me page.

    Doing the same activity over and over expecting different results Is the definition of Insanity. So, What makes this website different than other blogs?  To start with I have changed the name. It always irritated me to have my name on the website. I couldn’t think of any other names. I know the URL is the same but that’s only for lack of funds. I want to focus on the quality of blogs instead of quantity. There was a time when I was publishing two blog posts a week, a podcast episode, and publishing my first book all at once! By the time the book was posted on Amazon for purchase in July I was creatively exhausted. This time I will be posting only once a week on Wednesdays for 26 weeks out of the 52 week year. from March 2022 To March 2023.  I’m still going to be writing every day I’m currently working on a follow-up to my book.

     I will periodically drop book excerpts. In addition, I have all my original posts from the last website. So there will be plenty of content throughout the entire year.  A steak is always better than a hamburger, right? 

    Each post will focus on a different aspect of disability life and spirituality. challenges in life are not always bad, sometimes we need them to persevere in our circumstances. the disability community is still second-class citizenship. I hope we can change this by starting a dialogue after each post. I welcome all comments and feedback.  If you guys want me to cover a specific topic please let me know. I can’t wait for our next conversation. 

    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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