The Advocacy Life Podcast & Blog

Tag: Disability Awareness

  • New advocate in Washington DC

    New advocate in Washington DC

    Support The Work

    CashApp
    PayPal

    Podcast Platforms

    Amazon Music
    Apple Podcast
    Castbox
    iHeartRadio
    Pocket Cast
    Radio Public
    Spotify
    YouTube

    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

    Subscribe
    PayPal
    CashApp

    ← Back

    Thank you for your response. ✨

  • Walk of Destiny

    Walk of Destiny

    Support The Work

    CashApp
    PayPal

    Podcast Platforms

    Amazon Music
    Apple Podcast
    Castbox
    iHeartRadio
    Pocket Cast
    Radio Public
    Spotify
    YouTube

    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

    Subscribe
    PayPal
    CashApp

    ← Back

    Thank you for your response. ✨

  • Ensure Privacy for People with Disabilities

    Ensure Privacy for People with Disabilities

    Support The Work

    CashApp
    PayPal

    Podcast Platforms

    Amazon Music
    Apple Podcast
    Castbox
    iHeartRadio
    Pocket Cast
    Radio Public
    Spotify
    YouTube

    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

    Subscribe
    PayPal
    CashApp

    ← Back

    Thank you for your response. ✨

  • Coming Back from Everything

    Coming Back from Everything

    Support The Work

    CashApp
    PayPal

    Podcast Platforms

    Amazon Music
    Apple Podcast
    Castbox
    iHeartRadio
    Pocket Cast
    Radio Public
    Spotify
    YouTube

    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

    Subscribe
    PayPal
    CashApp

    ← Back

    Thank you for your response. ✨