The Advocacy Life Podcast & Blog

Tag: disability rights

  • Disability and the American Dream

    Disability and the American Dream

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

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

    free and both of the US Constitution

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

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

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

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

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

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

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    Cinematic Civil War

  • Hope for Disabled Travelers

    Hope for Disabled Travelers

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    Greetings readers, Now that summer is over and everyone is back from their vacations, I thought it’d be a good time to advocate for some systemic change. Traveling with a disability is an absolute nightmare. 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 am removed from my wheelchair and placed on the aisle seat. This is a device resembling Hannibal Lecter’s transportation flight. You can see a full description of this device in the YouTube video. Then I am placed in a regular airplane seat. 

    “lest you lose your honor to others and your dignity to one who is cruel,” Proverbs 5:9 NIV

    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 that 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 have gone by. I do not go on long-distance flights What if I have to use the bathroom? I’d have to expose myself in front of the entire airplane. What would I do if I were a female?

    A person with a disability may find it difficult to navigate an airport and board an airplane, especially if they use a wheelchair. Transfers are often difficult because traditional airplane seats are not always accommodating. These passengers’ difficulties are further exacerbated by the cramped quarters and difficult-to-access restrooms onboard.

    Delta’s Air4All prototype takes a giant leap toward enhancing airplane accessibility. With the idea of removable seats, spaces for wheelchair users would take the place of traditional rows. Allowing individuals to remain in their wheelchairs not only ensures their comfort but also promotes their Self-determination. This innovation celebrates the independence of passengers with disabilities. This ground-breaking design lets wheelchair users remain in their own chairs, maintaining their comfort and dignity. Boarding and deplaning would be streamlined and much more user-friendly for the individual. This is still in the early phases, so advocates need to speak up now!

    Delta’s Air4All is a beacon of hope for accessible air travel. By introducing removable airplane seats to accommodate wheelchairs, Delta is transforming the flying experience for individuals with disabilities and encouraging other airlines to follow suit. As we soar toward a more inclusive future, let’s unite to ensure that everyone, regardless of their physical abilities, can experience the joy of taking flight.Thank you for reading, and I hope to see you guys next week. You can find the sources below.

    Sources:

    https://www.travelandleisure.com/delta-wheelchair-prototype-air4all-7509744

    Disability Limbo Newsletter

    I started Letters from the Limbo as a way to connect with you on a deeper level. Twice a month, I send out an email filled with personal anecdotes, professional updates (like my recent reelection as Vice Chair of the NJCDD), and the policy insights I don’t share anywhere else. This isn’t just another email—it’s an unfiltered look at the life of a disability advocate. Join my community and get an exclusive, honest look at the work that matters

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  • A Message for Young Advocates

    A Message for Young Advocates

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    Salutations to my dear friends. I hope you guys are all enjoying the early days of spring. Every once in a while, we all need a pick-me-up. I decided to write one for my fellow individuals who may be having a hard time right now. Please read or share this with any individuals with a disability of any kind who are going through a difficult time. I, the writer, have a disability, so I hope my words can provide additional comfort. What I’m going to do to make this writing a little more digestible, is list ten brief statements for you to ponder over. Please note the order does not indicate importance; it’s just the way it came out of me.

    I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalms 139:14 NIV
    • Just because there is something medically wrong with you does not mean there’s anything wrong with you. Scientifically one in four people are diagnosed with some form of developmental disability. It is universally understood that no human is perfect, therefore there has to be something wrong with everyone.
    • Don’t let your bad days distract you from remembering the good days.
    • You are under no obligation to accept someone’s evaluation of you.
    • Everyone always fights for what they want, don’t let them make you feel less than for doing the same.
    • Your disability cannot stop you from having a life, only you can do that. Learn the difference between existing in living.
    • if you want people to see you as a person, you must do it before the public does.
    • Your disability does not give you an excuse to treat others any less than you want to be treated.
    • Learn to rest and exercise both your mind and your body.
    • We are never abandoned without a gift. Once you learn what yours is, do not be afraid to use it.
    • Find a small circle of friends, not a large number of acquaintances.

    I pray this small blog finds someone who needs uplifting and encouragement. Remember, you are not given anything you cannot handle. Thank you for reading, and I hope to see you soon.

    Disability Limbo Newsletter

    I started Letters from the Limbo as a way to connect with you on a deeper level. Twice a month, I send out an email filled with personal anecdotes, professional updates (like my recent reelection as Vice Chair of the NJCDD), and the policy insights I don’t share anywhere else. This isn’t just another email—it’s an unfiltered look at the life of a disability advocate. Join my community and get an exclusive, honest look at the work that matters

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  • Get Naked

    Get Naked

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    Disability Limbo Newsletter

    I started Letters from the Limbo as a way to connect with you on a deeper level. Twice a month, I send out an email filled with personal anecdotes, professional updates (like my recent reelection as Vice Chair of the NJCDD), and the policy insights I don’t share anywhere else. This isn’t just another email—it’s an unfiltered look at the life of a disability advocate. Join my community and get an exclusive, honest look at the work that matters

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    Note: The following book post is an excerpt from my book Confessions From Disability Limbo only on Amazon and Audible. it is a very crude example of disability life.

    Ladies and gentlemen, I have a problem. I know someone will find it controversial. I am fearfully waiting for an email from some legislative officer in the governor’s office, removing me from all the committees I serve on. Besides, I know my mother, little sister, cousins, and 80-year-old grandmother are all going to make a line to beat me after reading this. I beg the Indulgence of all of you. This is advocacy in its purest form. Are you comfortable naked?

    That is why a man leaves his father and mother and is united to his wife, and they become one flesh.
Genesis 2:24 NIV

    Two years ago, I was on a respite with my twin brother. They undressed me on the bed. When my brother said that, he had to use the bathroom most urgently. Our staff quickly went to go handle his needs, and they left me like Adam in Paradise before he discovered fig leaves! I rolled over and grabbed my phone and began listening to music. A few minutes later my staff finds me in my little world drumming along to the epic drum solo in the song I Can Feel It calling in the air tonight by Phil Collins.

    I have often said that I’m uncomfortable with my body, but I have become comfortable being naked around strangers. I am a 35-year-old male wing roughly 135 lbs. Exactly 5 feet tall with hair everywhere on my body except my head, with a collection of scars from past surgeries. I will not be on the cover of GQ magazine soon. The staff that saw me in this vulnerable status had met me less than 24 hours earlier.

    There is this trend on the platform Tik Tok where people walk in front of their significant others in the nude facing the camera outward to capture the reaction. Every time I saw one of these videos I had the same thought “this does not represent my life and those in the disability community.” Imagine having a conversation about sports or if they liked the Chinese food last night as you go over the proper procedure for them to clean your backside. Some people might find this awkward or even laughable I am still one of the lucky ones because being naked often leads to torture for some individuals. For many years, receiving a cold shower was a form of behavioral control for those who lived in institutions. Individuals or the very staff that were supposed to protect them violated some daily. This still happens today. How would you communicate that the water was too hot if you couldn’t speak? This also happens every day.

    I have a challenge for every person who reads this post. Tell or ask someone you love something personal about you when you are nude. Then make yourself have a conversation This simple exercise would hopefully give you a glimpse of what it is like to feel like those of us with disabilities. Even when you are getting a break because most of the time, the people that see us in this vulnerable state we don’t love.

    Here are the rules:

    You can’t do it after sex when everything is perfect.

    You can’t do it to get their attention, you know this is not about sex.

    You can’t cheat and say, ” is this a mole on my back?” It’s got to be something real.

    The most important conversations I have ever had have been in this moment.

    All I ever wanted to do is share my experiences with the rest of the world to show that people with disabilities are people first. Something that society forgets about from time to time: thank you to anyone brave enough to try this. Have a great day, friends.

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  • Who is Bill Byrne?

    Who is Bill Byrne?

    Quick question to all my readers, Do you know the name of your town mayor?  I’ve lived in the southern part of New Jersey for almost 15 years now and I have no idea who he or she is. I’ve been advocating for my disability community officially since September 2016. I just move on to the next meeting trying to speak for those who cannot speak for themselves. Advocates and disability allies never acknowledge the work we do. We just keep going. There is an international disability community, we all work together to ensure dignity and respect for all regardless of circumstance. The New Jersey Council on Developmental Disabilities (NJCDD) hosted their Community Building Awards An event that is held every few years to honor leaders in the disability population.

    Earlier this week I was left speechless When I met a real-life disability hero, Mr. Bill Byrne. I’m ashamed to say this but I did not grow up training or believing in disability rights. I had a very laid-back approach and let my parents do everything. I didn’t begin to discover my voice until well after I was 18. people like Mr. Byrne were rockstars to me. Everyone knows of Madonna and The Beatles for example. At least in New Jersey and in some national circles, That’s how people describe Bill to me. Here are some of his accolades:

    1. He is friends with Mayor Dorothy of Morristown, NJ. He regularly attends town council meetings.
    2. One of the biggest advocacy organizations used to be known as the Association for Retarded Citizens. Thanks to Mr. Byrne and his colleagues There now known as just The Arc.  
    3. He petitioned the New Jersey government to have the words idiot, insane, and retard removed from the state constitution In the early 2000s. 
    4. He sits on many state, local, and national boards.
    5. A proclamation was passed in his township that declared August 16th as Bill Byrne’s Day.

    Yes, I knew he was receiving the Colleen Frazier award for Self Advocacy from the NJCDD weeks before the event. I am the vice chair of the NJCDD to be transparent. (They’re not sponsoring this article or any work that I post on this website.)  It never occurred to me that I would see him there or sit at the same table as he did. I didn’t realize it until he came to shake my hand. This gentleman who had been raising awareness for disability issues since before I had braces talked to me like  I was the next-door neighbor that he had known for years. So often I get frustrated because my work is not good enough for my perfectionist standards. I know we can all relate to that. We are so focused on tangible results, that we forget about the personal touch. Bill has mastered the personal touch.

    “If I must boast, I will boast of the things that show my weakness. The God and Father of the Lord Jesus, who is to be praised forever, knows that I am not lying.”2 Corinthians 11:30‭-‬31 NIV

    This man who cannot read or write and I’m sure has been put down by others, was so humble and passionate. The first words he spoke when he got up to the podium were to praise and Thank God. As a new Christian, this was the first time I completely understood the mission! All his work meant nothing to him without God. Mr.  Byrne from one disability advocate to another, I thank you for showing me the way. You reminded me of what matters. I pray these words can help someone else. Thank you for reading I will see you next week.

    Sources:

    https://patch.com/new-jersey/morristown/bill-byrne-gets-his-day-in-the-sun

    Bill Byrne, champion of the ‘differently abled,’ to be honored by Morristown mayor and council
  • An Interabled Love Story Part 2

    An Interabled Love Story Part 2

    Welcome back, friends. as promised I am presenting my second interview with Charlie and Margaret. A fabulous interabled couple. Since the last interview in 2020, they’re now engaged and more in love than ever. You can find more about the story on their blog and other social media accounts at Just an Interabled Thing. I gave them each a set of questions their answers have never been altered. They deal with society’s judgments on a daily basis they handle them with grace and kindness. They are an example to everyone that love is real. Regardless of circumstance. I am so thankful they gave me this opportunity to be part of their lives. Hope everyone enjoys it and I will see you next week.

    Questions for Margaret:

    1. Your fiance is not independently wealthy and cannot do basic household chores like taking out the garbage, how does he provide for you?

        “There are different definitions of providing, I would argue that providing emotional support and things like that is harder than providing financially or physically, you know what I mean? Charlie is amazing with emotional support. Our current living situation is living rent-free with my dad, and I do all the cooking and most of the cleaning around the house, we are both so grateful for my dad letting us live in his house.”

    2. How has this relationship changed you as a person?

       “I think that dating Charlie has given me more confidence. When you are in an interabled relationship, you are almost guaranteed to get looked at in public. Being with him has taught me not to care what other people think when I get looked at like I shouldn’t be with him or like I was crazy for being with him.”

    3. Was  Charlie’s family afraid of you dating him? (Follow up) Did you have to earn their trust?

      “ I don’t know the answer to that. I’m sure there were some apprehensions about it at first, and I’d like to think that I’ve earned their trust.”

    4. Being Charlie’s caregiver is easy now because you’re young, What do you plan to do when you both get older and your needs change?

       “I want it to just be me for as long as I can, we have talked about this and when I am no longer able to take care of Charlie on my own, that is when we will look into getting help.”

    5. Are you hesitant to get married due to the disability marriage penalty? The assumption is you would have to take on the financial burden as well as the caregiving one.

     “Absolutely, it amazes me that disabled people still don’t have marriage equality, maybe that stems from the assumption that disabled people are not worthy partners, I don’t know. It scares me as of now because I don’t make that much money and I have student loans to pay off and bills, and we don’t even have our own home yet. Charlie has a bachelor’s degree and tries so hard to get a job and has yet to have success, but hopefully one day a company will see all of his potentials and he will have a job.”

    "Love must be sincere. Hate what is evil; cling to what is good. Be devoted to one another in love. Honor one another above yourselves."Romans 12:9‭-‬10 NIV
    Questions for Charlie:
    1. On the subject of engagement, everyone always focuses on the female. as a disabled male, the expectation is that you will never get married. What did it mean to you to be able to “pop the question?”

    “Honestly, I never thought I would get to that point with someone. I was so used to getting to the CP part of the discussion and people disappearing. I knew very early on that Margaret was the one and knew Disney would be the place. When it came time to pop the question, I thought I would be nervous, but I was not. To me, It was the easiest question I ever asked.”

    1. How can advocates like yourself, break this false expectation of people with disabilities unable to love?

    “Society views disabled people as unworthy of love. To break that ableist view, Margaret and I always post pictures pretty much daily on each of our Instagrams of places we go, etc. We are also not afraid to be all over in public either.”

    1. How has this relationship made you more independent not only physically but as a complete person? (Follow up) If God forbid you guys broke up, Are you afraid you’d have to move back home or into a group home facility?

    “My relationship with Margaret has definitely made me more open and vulnerable. Margaret has always allowed me to be my true self around her and we talk about anything and everything. If we ever broke up, we would no doubt find our way back, there’s no one else for me.”

    1. Was there any aspect of your life as a whole that you will reluctant to let her see or help you with?

    “No that were any aspects of my life that I was reluctant for Margaret to see or help with. I think her experience with people with a disability made everything easier. Margaret was very open about wanting to learn about my care and was helping with getting me dressed, showering, and bathroom stuff from the beginning.”

    1. What do you say to any skeptics that believe that Margaret settled for you and she could do better?

    “To society, our love is as real as it gets. Just like me, Margaret thought she would never find something like this. Margaret never saw my CP or my wheelchair first, she saw me as a person. I know for sure society thinks well he can’t do anything and as a result sees no value. I do plenty for us and Margaret makes me want to be the best version of myself every day.” 

  • Financial Slavery

    Financial Slavery

    I’m a 35-year-old single male with a developmental disability. I’m a capitalist and I love this country but I am financially suffocating. I am writing this on July 5, 2022. The day after this great nation celebrated its independence. This is the land of the free, the home of the brave, and most of all opportunity. Individuals like myself are never given this opportunity. I don’t believe in complaining. I support small businesses and I admire corporations like Google, thanks to the dictation software on this Chromebook I can give you blogs like these. I would like to showcase how expensive it is to live with a disability. I want to focus on two specific numbers $2,000 and $3,000. 

    One person gives freely, yet gains even more; another withholds unduly, but comes to poverty.
    Proverbs 11:24 NIV

    As an individual, the maximum I’m allowed to have in my bank account is $2,000 at any one time. If I were to get married that’s when I am eligible to make $3,000, The reason why no one is in a rush to get married with a disability? You cannot have more than $3,000 between both partners. Most disabled Americans and the majority of non-disabled know these numbers. What people don’t realize is these numbers have not been increased since 1983 by President Ronald Reagan. According to the national price index, the current inflation rate is 8.6% The monthly maximum Federal amounts for 2022 are $841 for an eligible individual and $1,261 for an eligible individual with an eligible spouse. Every asset except for the house you live in will count against you. Most of my colleagues with disabilities including myself do not make the maximum the average amongst people I know is approximately $500 a month. The majority of Americans have invested in some form of stocks.  People with disabilities cannot afford this luxury. 

    The average accessible vehicle is $60,000. For me to sit in my chair and be the advocate that I am every day costs $50,000.  I need 24/7 personal care. To receive my care I must remain Medicaid eligible. All I have to do to maintain my eligibility is stay below the poverty line. I am not an economist but something seems out of balance with the American dream. There are programs like Able Accounts and Special Needs Trust Funds that will allow disabled Americans to save but they are very complex and restricted. New Jersey also just updated its WorkAbility program In January of 2022 but as of July of the same year, the signed law is still not been implemented. Instead of circumventing an already overloaded system, if you raise the asset limit to $10,000 per individual, we will ensure that people with disabilities can contribute to this country’s economy. If we don’t fight for financial freedom, then some Americans will always be slaves.

    Note:

    This was also featured in the disability in the Disability in Focus Blog run by the New Jersey Council on Developmental Disabilities:

    https://njcdd.org/financial-slavery/

  • The History and Future of Disability Pride

    The History and Future of Disability Pride

    As Americans, there are certain days we all recognize when we look at our calendars. Independence Day, Labor Day, Memorial Day, and Martin Luther King Day.  future generations of students will be taught about Barack Obama and Juneteenth. We have such a rich history to learn from and be proud of. However, there is a particular group of heroes that have been neglected. The time has come to acknowledge what they have done and call a new generation of advocates into action.

    Rosa Parks and Jackie Robinson are names every person in this country knows. Unless you have a disability, names like Judy Heumann, Brad Lomax, and Katie Cole are foreign to you. These proud patriots are some of the leaders of the protest that has come to be known as the 504 Sit-in.  Starting April 5, 1977, approximately 150 individuals with various disabilities occupied the Office of the U.S. Department of Health, Education, and Welfare in San Francisco for 28 days.  To require enforcement of The Rehabilitation Act that was signed into law a few years earlier. For nearly a month these brave people risked their lives. Going without medication and personal care. You would think after such an effort You would see change begin to happen, but it took 13 years to see any tangible evidence of equality.

    Blessed are the peacemakers, for they will be called children of God.
Matthew 5:9 NIV

    Let’s talk about July 26, 1990. Without using Google most of the population are unaware that this is the day the Americans with Disabilities Act (ADA) was passed. This legislation means much more than handlebars in the bathrooms and curb cuts on sidewalks. It guaranteed civil rights for individuals with disabilities. There is a misconception that because of this law All the problems of the disability community are solved. Earlier this week the Department of Justice filed a lawsuit against the Chicago Cubs and Wrigley Field for significant violations after a multi-year renovation project. How long must we remain an afterthought?

     In the mid-1980s journalist, Geraldo Rivera did a series of stories exposing the horrific treatment of individuals in Developmental Centers.  Earlier this year a nursing home in Sussex County New Jersey made national headlines for having our most vulnerable citizens in inhumane conditions leading to death and malnourishment. Over 200 humans were locked away without committing any crime and deprived of due process. I love this country and I am a proud American but advocates like myself Can no longer stand by while we sponsor second-class citizenship. That is not in the Constitution I studied.

    Did you know that there is a disability pride flag? The colors are a separate concept from the rainbow flag identified with the LGBTQ community. The five colors represent the different needs and experiences of the individual. Mental Illness, Intellectual and Developmental Disabilities, Invisible and Undiagnosed Disabilities, Physical Disabilities, and Sensory Disabilities. The month of July is known as disability pride month, but what exactly is disability pride? I was asked this question a few days ago, and this was my answer. “Disability pride is loving and accepting yourself, even though the world will not.” 

    Ken Capone leads the charge to end sub-minimum wage in segregated workshops. In the year 2022, they are still legal.  Emily Voorde is a female with a disability. She is the Associate Director for Disability Community Engagement in the White House. Their tireless efforts are never seen.  New Jersey has its own coalition of heroes.  Keith Jones is a disability activist, award-winning author, and former presidential candidate. Project Freedom helps individuals obtain accessible housing. Their founder Norman Smith has a disability.

    The inscription on the Statue of Liberty reads “”Give me your tired, your poor, Your huddled masses yearning to breathe free, The wretched refuse of your teeming shore.””  This was written in 1883 139 years later and people like myself Can’t read it, because of all those steps. 

    The next generation of disability advocates must not rest. We need to rise up and continue the work that has been laid before us. In January of 2022, Governor Murphy signed a law updating New Jersey’s WorkAbility program, as of July of the same year the legislation is still not implemented. With these updates, Disabled New Jersey residents would be able to earn a competitive wage, pay taxes, and keep their health benefits. By entering the workforce people who can work can support those with more complex medical needs. If we invest in more medical group homes we can avoid tragedies like the one mentioned above. This would create more jobs for caregivers and relieve stress on the overwhelmed disability care system. On the national level, We must end the marriage penalty and raise the $2,000 asset limit set in 1983. America cannot become the land of opportunity until all Americans have a chance to thrive.

    Note: every advocate mentioned Is very well known. It is very easy to learn more about them if you just take the time

  • Disability Burnout Solutions

    Disability Burnout Solutions

    Have you ever felt burnt out? That’s what I want to talk to my readers about today. This is one of those posts that I’m going to love to write but someone is either going to say I’m mentally unstable or completely naive. I’m writing this because I know I’m not the only one. I’m not depressed, I’m actually in a very good mood right now.  Life is complicated. We all know that it’s how we compartmentalize those complications that matter. ask any mom if they have all locked themselves in a bathroom for 15 to 20 minutes just to get a break from their kids that they love more than anything. Any father has been known to blast the nastiest music when the kids step out of the car just because they’re tired of listening to Baby Shark. There is a day of the week that we’re supposed to rest and not do any work. Whether we take advantage of it or not is a whole different story but the day is there regardless. I can’t rest. I have disability burnout!

    “aren’t you sitting down in your wheelchair, so how can you be tired?” Let me be clear I absolutely and unequivocally love my life. I don’t want to change it. I love answering kids’ questions in public, even though their parents can sometimes be jerks. My father, who is my primary caregiver, can be one of the funniest people in the world. That doesn’t mean I don’t feel like a burden sometimes when I can see he is exhausted after taking me back and forth to doctor’s appointments.  I thank God every time I get a chance to write a policy for those who cannot speak for themselves.  My eyes still get tired at 11:30 at night when I’m still looking through my emails.  Being broke is not fun but I’ve never gone hungry or gone without a roof over my head. I don’t need to get married tomorrow but it would be nice to be truly missed by someone special when they had a bad day. getting that look that says “ I want you right now!”

    The hardest part about having a disability it’s not all the physical things I can’t do myself. is the fact that there will never be any days off. I don’t get to walk on Sundays. It’s not like losing 10 lbs by going on a diet. all the physical therapy in the world can only do so much, and I love my physical therapy sessions. Some parts of my body hurt every day. except for some breakthrough in science I am most likely going to die with this Cerebral Palsy I was born with. thinking about all this is and can be exhausting. There is a very difficult but simple way to handle this paradox.

    “We who are strong ought to bear with the failings of the weak and not to please ourselves. Each of us should please our neighbors for their good, to build them up.” Romans 15:1‭-‬2 NIV

     All you have to do is not deny it at all but refuse to dwell in it. Instead, you look at all the light that is around you and all that you can do for yourself. it could be as easy as reading these words or having them read to you.  giving up is easy finding great ways to continue that’s the challenge. That begins every day, isn’t that worth living for? I love you all, have a great day friends.

  • The Urgency for the Disability Workforce

    The Urgency for the Disability Workforce

    Hello, my wonderful reader thank you once again for choosing to spend a little time with me on your Wednesday. I get asked every so often what do you do for a living? In today’s post, I want to provide a glimpse into that. The following are my remarks that were released as part of the event that was held on May 4, 2022, by the New Jersey Council on Developmental Disabilities (NJCDD.) I hope you enjoyed and I can’t wait to read your comments.

    “The tongue has the power of life and death, and those who love it will eat its fruit.” Proverbs 18:21 NIV

     NOTE NJCDD Did not sponsor this post or any other work on this website. The statement featured is the opinion of the author prior to editing on the date of release. You can find a full copy of the report mentioned at the bottom of this post. 

    Greetings and warmest regards, Thank you all for making time to discuss this very prevalent issue affecting the most underserved and underrepresented population in New Jersey and the nation at large. My name is Kevin Nuñez I am fortunate to be the current Vice-Chair of the New Jersey Council on Developmental Disabilities. I’m a 34-year-old Puerto Rican male living with Cerebral Palsy.

    It is a well-known statistic that one in four Americans are diagnosed with some form of developmental disability, this is roughly 25% of our population. Our population is willing and able to pay their share in taxes and become contributing members of their local communities. All we need are solid opportunities. The reality is the Employment First policy that was passed a decade ago did not become a call to action but instead a slogan for stakeholders. The intent was there but the execution was not. The outline steps proposed in his plan are prudent and cost-effective.

    Too often have individuals like myself been threatened with the $2,000 asset limit, as we reached the end of educational entitlement. Recently legislation was passed to enhance New Jersey’s WorrkAbility to eliminate the unearned income caps and age requirements. It is common sense measures like these that would create the chances for this population to not only succeed on a temporary basis but thrive in a long term. However, if individuals and families do not know about these programs as they reach the critical age, then the tireless work of the advocates and legislators would be for nothing. education and sustainability are the keys to American progression. 

    If we invest in the individual and what their needs are to maintain competitive employment the disability system would not be so overwhelmed, the reverberation would be that those who can work could help support those who need more intense support and cannot. one hand has to wash the other it’s that simple.  The employment first initiative is derived from the idea of person first. 

    In closing, I would like to leave you with this,  “promote the general Welfare, and secure the Blessings of Liberty” This comes directly from the US Constitution. The same one that begins with “ We the people”  PEOPLE with disabilities just want the same opportunities as every other American. Thank you for your time and have a good day.

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