Category: Disability Awareness

  • A Message to the New Governor

    A Message to the New Governor

    “The price of freedom is eternal vigilance,” Thomas Jefferson famously declared.

    I’m writing this blog just hours before the election results roll in here in New Jersey. By the time many of you read this, our state will probably have a new governor-elect. If I could address the incoming governor, I would start with this: Do not forget us.

    The disability population is the largest, most underserved, and most underrepresented community in America. We are voters. We are taxpayers. We are citizens. Yet, we are an afterthought, if thought of at all. Our needs are frequently sidelined in policy debates, treated as niche issues rather than fundamental human rights. This needs to change.

    Our community is incredibly diverse. Disability comes in every skin color, every background, every walk of life. It touches families across all demographics, socio-economic statuses, and geographic locations. This means that disability rights are unequivocally human rights. They do not subscribe to any single political party, and our allegiance isn’t to a red or blue banner, but to the dignity of every person.

    We stand for policies that genuinely support independence and self-determination, not those that inadvertently trap individuals in poverty or limit their potential. The disability experience is unique to the individual; a “one size fits all” approach simply does not work. We need policies crafted with nuance, understanding that what empowers one person may not work for another. We need legislation that respects the dignity of risk, allowing individuals to make choices, to learn, to contribute, and to live full, meaningful lives without fear of losing essential supports.

    Many people with disabilities can and want to work. We want to contribute to our communities, to pay taxes, and to be active participants in the economy. Yet, current systems often create perverse disincentives, penalizing individuals who earn above a certain threshold by stripping away vital benefits like healthcare or personal care assistance. This traps people in a cycle of dependence when they desire nothing more than to be independent. Help us break these barriers. Help us contribute without fearing penalty. Help us be taxpayers, not perceived burdens.

    Our community wants to contribute, not just consume resources. We seek opportunities, not charity. We demand respect, not pity. We are a vital part of New Jersey, and our voices deserve to be heard, our needs addressed, and our rights protected.

    As the new administration takes shape, I urge them to remember Thomas Jefferson’s warning. The freedom and well-being of the disability community depend on constant vigilance from our leaders. We will be watching, advocating, and striving for a New Jersey where every citizen can thrive.

  • Beyond the Sandbox

    Beyond the Sandbox

    Community blog

    “Being all equal and independent, no one ought to harm another in his life, health, liberty, or possessions.”

    These words, penned by John Locke in his Second Treatise of Government, form a cornerstone of the philosophy. That speaks to a fundamental understanding of human dignity and mutual respect. Yet, as I watch the political theater unfold in Washington, with the government shutdown extending beyond six weeks and critical aid hanging in the balance, I can’t help but feel a profound disappointment between these foundational ideals and the harsh reality facing millions of Americans.

    The job of the legislative branch, in its most basic form, is to look after the interests of the people. “The voice of the populace” is the protector of our collective well-being. Right now, while our elected officials bicker, real people are staring down the barrel of unimaginable hardship. Mothers, individuals with disabilities, and teachers—some of the most vital threads in our societal fabric—are in danger of losing their food stamps after November 1st. The SNAP deadline looms, threatening to strip away essential support from those who depend on it most to put food on their tables. Meanwhile, those who are supposed to be serving us are still getting paid, seemingly for not doing their jobs.

    “We the People of the United States, to form a more perfect Union, establish Justice, insure domestic Tranquility, provide for the common defence, promote the general Welfare, and secure the Blessings of Liberty to ourselves and our Posterity, do ordain and establish this Constitution for the United States of America.”- Preamble of the United States Constitution.

    This isn’t the fault of one side alone. This crippling gridlock is a failure shared by both Democrats and Republicans. Instead of focusing on the big picture – the welfare of the citizens they swore to represent – they’ve become like children refusing to play in the sandbox. Each side digs in, unwilling to concede an inch, while the very people they serve suffer the consequences.

    “Both sides must part from some of their demands in order that they may join in some accommodating proposition.”-Benjamin Franklin

    This isn’t weakness; it’s the essence of effective governance. It’s the recognition that the greater good often requires compromise, a willingness to find common ground for the sake of the nation. Ensuring access to healthcare, or providing stability for those who depend on government programs to have a semblance of a quality of life.

    A government shutdown of this duration is not a mere inconvenience; it’s a national crisis in slow motion. People will suffer. Those already living on the margins will be pushed further into despair. The fragile lifelines so hard-won and essential for survival, are being torn apart by political posturing. The consequences are real, immediate, and devastating.

    We, as citizens, must demand better. We must remind our representatives of their fundamental duty: to protect the life, health, liberty, and possessions of all their constituents. This isn’t about choosing a side; it’s about choosing humanity. It’s about insisting that our leaders move beyond the partisan sandbox and fulfill the promise of a government that actually works for its people.

    Let us hold them accountable, not for their party affiliation, but for their commitment to compromise, to service, and to the basic principles of equality and mutual respect upon which this nation was founded. Our most vulnerable cannot afford their games.

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  • Unknown Future for Disabled Students

    Unknown Future for Disabled Students

    October community Blog

    An executive order aimed at “reorganizing the executive branch” has initiated a restructuring within the Department of Education so sweeping that an estimated 90% of the Department of Special Education has been cut. This is not mere bureaucratic shuffling; it is a profound threat to the educational lifeline of millions of students with disabilities and their families across America.

    The Office of Special Education Programs (OSEP) and the Rehabilitation Services Administration (RSA)—two pillars of federal support for disability education and vocational services—are being consolidated into a new “Office of Disability Programs.” While presented as an efficiency measure, this move risks diluting specialized expertise and advocacy under a broader, less focused umbrella.

    It suggests a fundamental misunderstanding of the intricate needs of students with disabilities, whose educational journeys require dedicated attention. We are not just “people with disabilities”; we are students with IEPs, individuals requiring specific accommodations, and citizens entitled to tailored pathways to independence.

    The countless parents who have fought tooth and nail for their children’s rights under the Individuals with Disabilities Education Act (IDEA). They’ve navigated complex systems, battled for resources, and advocated for individualized plans that are often the only guarantee of a meaningful education. Now, with the federal offices designed to uphold these rights being drastically downsized, what does this mean for the future of compliance, oversight, and—most critically—access?

    This prospect could leave families isolated, battling under-resourced schools, and facing an even more daunting bureaucracy. This isn’t an abstract policy change; it’s a direct assault on the promise of an equitable education for our most vulnerable students.

    This cannot and must not be allowed to become a partisan issue. Disability rights are human rights. They transcend political ideology because they speak to the fundamental dignity and potential of every individual. Every community, every family, regardless of political affiliation, is touched by disability. Access to education, vocational support, and a life of self-determination are not negotiable political bargaining chips; they are universal entitlements in a just society. When we diminish these protections for people with disabilities, we don’t just harm a segment of our population; we diminish the moral standing and strength of our entire nation. A powerful society uplifts all its members, recognizing the inherent value and contribution of all citizens.

    Therefore, we must move beyond fear and into urgent action. The immediate and paramount call to action is to educate and empower families with disabilities to navigate this perilous new landscape of disability services.

    • Stay informed, double-check all sources, and share what you’ve learned.
    • Engage with your local school boards, state disability councils, and advocacy organizations. These local entities will be on the front lines, and they need reinforced support and active participation.
    • Build new connections by reaching out to others who have not been reached before, and collective strength is the key.

    The foundation of disability education in America is under threat. By uniting, informing ourselves, and advocating tirelessly, we can protect the rights and futures of millions. This fight requires every voice.

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  • Disability Limbo Newsletter October 6, 2025

    Disability Limbo Newsletter October 6, 2025

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  • Letters From Limbo September 22, 2025

    Letters From Limbo September 22, 2025

    Screaming for Compromise

    September 22 2025

    Main idea

    This past week, I was really disappointed in my fellow Americans. As you know by now, the political activist Charlie Kirk was assassinated. I’ll be the first to admit I did not agree with all of his viewpoints, but I did not wish Eva on him or his family. The individuals celebrating his death sickened me. There is a time and place for everything. What respect for our fellow man? Freedom of speech is not just for those who agree with you. People like Jimmy Kimmel should be canceled; that was not the time, and that was not the place. People used to watch late-night TV to laugh and unwind before bed. Certain topics should never be used for comic relief.

    Again, his viewpoints were harsh. Like every person, he said some things I agreed with and some things I absolutely did not agree with. When did we become a nation of absolutes, unwilling to compromise? He believed in the political discourse, which is what this country was founded on. There are a lot of similarities between what he did and what I hope to one day do. He started with a podcast, like I have. I have little doubt that he was running for office at some point. I would also love to do this. Would America support a disabled candidate? That is not a shame to say he loves Jesus and is willing to work with everyone. Would an elected official have a disabled advisor? Those in power need to surround themselves with all kinds of opinions, not just ones that they like.

    Brand Update

    I want to thank all six of you for taking the time to support this little content creator. I would love to see this part of my creations grow because I think it’s more fun and personal compared to my podcast and blogs, which tend to be more business-like. If you could help spread the word, I would really appreciate it. I know I technically missed last week, but I forgot that there was already a community blog published that same week. I don’t want to overwhelm you with too much content, so I’m trying to strike a balance.

    New Goal/Achievement

    This past week, we celebrated my dad’s 59th birthday. I know this is not a typical goal, but violence is a prominent blessing. So many parents have to bury their children because of violence and drugs. I’m thankful for every day we have together. Happy birthday, old man!

    Recommendations

    /I recently listened to the book A Time to Kill by John Grisham. The book is a little more detailed than the movie starring Seminole Jackson. Despite being written over 30 years ago, the themes are still relevant today. Here is a synopsis according to Google.

    A Time to Kill by John Grisham centers on Jake Brigance, a young defense attorney in Mississippi, who defends Carl Lee Hailey, a black man who has murdered two white men for raping and brutally assaulting his ten-year-old daughter. The trial takes place amidst intense racial tension in the town of Clanton, attracting national attention and the presence of the KKK, as Brigance navigates the case’s moral and legal complexities while fighting for his client’s life

    Ask the Audience

    Fall is officially upon us. My fantasy football league is all set up. I’m already 1-1 as of this writing. What’s your favorite part of fall?

    Quote of the Week

    “Yesterday is not ours to recover, but tomorrow is ours to win or lose.”

    Lyndon B. Johnson

    Next newsletter, October 6, 2025

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  • The Illusion of Disability Hierarchy

    The Illusion of Disability Hierarchy

    September Community Blog

    There’s no definition of “disability hierarchy,” and I think that’s on purpose. It is a construct, a trick to keep people with disabilities fighting endlessly over the same limited resources. It makes one disabled person seem “better” or “worse” than another. This artificial division only hurts us all, preventing us from focusing on the genuine problems we face.

    Everyone has things they’re good at and things they’re not so good at. That’s just how people are. When someone has a disability, these strengths and weaknesses often just show up more clearly. My life is a perfect example. I need a lot of help with physical activities every day–like bathing and getting dressed. Many people might see this as a big weakness, a sign that I can’t do things on my own. I was once told that,

    “Your life is simple because people do everything for you.”

    My experiences have taught me something important. What seems like a weakness can hide enormous strength. At habitation programs I’ve been to, I’ve met many people who could move around much better than I. They can go to the bathroom by themselves and perform many daily tasks that I can’t. But many of these same people looked to me to speak for them. They couldn’t talk to explain what they needed or wanted. In those moments, my “weakness” became their strength. My ability to speak up, to ask for respect, and to fight for what’s right became an important asset for them.

    Isaiah 45:9 NIV  “Woe to those who quarrel with their Maker, those who are nothing but potsherds among the potsherds on the ground. Does the clay say to the potter, ‘What are you making?’ Does your work say, ‘The potter has no hands’?

    This shows why the idea of a disability hierarchy is harmful. It makes us look at easy-to-see differences and judge who is “more disabled” or “less able.” But being able to do things isn’t just one simple thing. It’s a mix of physical skills, thinking skills, feelings, and how we talk to each other. Someone who needs a lot of physical help might be incredibly smart or have a spirit that inspires everyone. Someone who can’t speak might show so much through their eyes or actions.

    My journey, from needing total physical care to becoming a forceful advocate who speaks at big events and has a popular podcast, shows how strengths and weaknesses work together. My physical “weakness” has actually made my mind sharper and made me want to fight even harder for others. It has given me a way to understand and speak up for those who might not be heard.

    To move forward, we need to get rid of this harmful idea of a hierarchy. Instead of comparing needs or ranking disabilities, we must see the true worth and special talents of every person in the disability community. We need to understand that real strength comes from working together, from making each other’s voices louder, and from supporting all the different ways we give and get help. Only then can we truly unite to demand the resources and respect we all deserve. We won’t be broken groups fighting over scraps, but a strong, united force for change. This September, let’s promise to see all the different strengths in our community and say no to anything that tries to divide us.

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  • Tales of Affection

    Tales of Affection

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  • Birthday Reflections & More

    Birthday Reflections & More

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  • The DSP World

    The DSP World

    I wanted to raise awareness to a very big problem in our world today. It rarely gets any publicity; the average person doesn’t even know about it. The truth is unless you are affected by this problem, you don’t even know it exists. The problem is the lack of pay and benefits for direct support professionals (DSPs). What is a DSP? A direct support professional is someone who is paid through a provider agency or an individual to provide support and care to a person with a disability. As long as there are people who need assistance in their lives there will always be need for these professionals. There are four groups of people who are affected by this issue. They are: the individuals receiving the care, the family of the individual, the providers, and the professionals themselves. 

    Let me begin by addressing the individuals receiving the care.  People that have a disability will learn that they often must depend on others to assist them in one way or another.  They depend on the kindness of others to help them live their day-to-day lives. Could you trust someone with your most intimate tasks if you knew they would leave in six months? Just imagine knowing you’re going to lose the person you most confide in, even before they start. People with disabilities can tell almost immediately if the person is going to be good at their job. Most of all they can tell if the person will last. 

    Use your imagination for this next part please. You meet a person named Matt. After meeting him for only four hours, you need a shower. He must first undress you completely. Then he puts you in a shower chair. He then proceeds to give you a shower. Matt does his best to wash your private areas. After finishing and drying you off, he begins to dress you. If the individual is so fortunate, he can direct Matt on how and what to do. The truth is there are many individuals in the disability community that cannot speak for themselves. Therefore, Matt must try to interpret what they are trying to communicate. This is just one of the many duties of a DSP. I hope this brief example can illustrate the need for these very special people. 

    Next, I would like to talk about the direct support professionals themselves.  These professionals receive about 10 to 11 dollars an hour with no promise of growth in their career. Most providers offer little to no benefits at all (this includes sick time or health insurance). As a result if DSPs don’t work, they aren’t paid. This leads to severe burnout. Many times, they sacrifice their own health and well-being to make sure they can provide for their family and/or pay their bills. It’s ironic that they are responsible for the health and well-being of another human when, due to the lack of health benefits such as sick days, they cannot take care of their own health needs. What inevitably happens is the person leaves to another company in hopes of a dollar more. People believe they can use this job as a steppingstone toward a larger career goal. The other misconception is this job will only be a temporary solution until another opportunity opens up. They end up living paycheck to paycheck. The professional waits in limbo until they burn out or they get another job. 

    So why would someone do this job at all? These wonderful people do it because they care for others. They look forward to the moments when their individual lights up when they arrive in the morning for their shift. The relationship between an individual and the professional is truly symbiotic if done correctly. The individual gets a companion to help them with their wants and needs. In turn the professional should receive joy in the knowledge they are doing something to help someone live their life. Some things are worth more than money. It is truly heartbreaking when it is time for the professional to move on. The best way I know to describe this feeling for an individual, it’s like losing a loved one. For the professional, they are left with the memories of a person that has worked their way into their hearts. 

    The family and/or parents of an individual can also be affected by the DSP issue. Try to imagine having a 25-year-old son that you have cared for his entire life. One day someone shows up at your door ready to take him out to the park for the day. You as the parent are told almost nothing about the person who will be supporting your child for the rest of the day. By the same token, the professional knows almost nothing about the individual and the family they will be supporting. Most times both parties are just given a name with a brief description. A relationship of trust has to be formed out of thin air. This sadly is one of the best-case scenarios. Most individuals as they get older lose their family and the professional becomes, by default, their brother, mother, etc. Depending on the individual’s disability, they will rely on their “families” in almost every way. They need an advocate, a caregiver, and a friend. Could you imagine learning to give your complete trust to a stranger every six months? 

    The final group of people that are affected by the DSP issue are the provider agencies. The turnover rate in this industry is incredibly high. Providers cannot keep their staff. They spend money training these professionals and then they quit a few months later. The money is lost. The rates for these staff and providers have not been increased in approximately 10 years. For example if the state allows $15 per hour to a provider, and $10 goes towards the DSP, that leaves the provider with only five dollars to spend subsequent overhead, including important items like gloves and vehicle maintenance. The providers cannot give their staff benefits or raises if they are barely able to keep themselves above water. 

    The direct support professional problem in my humble opinion has reached crisis levels not just statewide but nationally as well. As long as there are people, people will always need care.  This industry is not going away any time soon. The system will never be perfect but something needs to be done now. This needs to be a call to action. We need to contact our state and federal officials to educate them on this very real problem. If we don’t act now people with disabilities may not have people around us to help us live our lives. 

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  • A Prayer for all

    A Prayer for all

    Description

    In the third episode of season 3, Kevin does a prayer and a blessing for anyone who needs it. This is a deeply personal look at the spiritual life of a person with a disability. If this topic interests you, please share and subscribe.

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