The Advocacy Life Podcast & Blog

Tag: disability rights

  • 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.

    Advancing_New_Jerseys_Employment_First_Full_ReportDownload
  • Patience Is A Virtue: Nick Takeover

    Patience Is A Virtue: Nick Takeover

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    How One Finds Balance Between Dependency On Others VS Self Advocacy

    By, Nicholas Taubenslag

    As children, we depend on parents to guide, teach, and for emotional support. They guide and teach us what’s wrong and what’s right. Whenever we have a negative experience that hurts our self-esteem we lean on them to help build it back up. For example, In the school years of my life I was emotionally tormented by bullies whom I thought were “friends”, however, I came to find out for myself they weren’t thinking in my best interest. My parents taught me that it’s important to forgive those people internally. Forgiveness is not condoning the other person’s behavior and/or actions by any means. It’s about finding a small measure of peace within oneself. Jesus Christ illustrates this point perfectly when he stated on the cross 

     Jesus said, “Father, forgive them, for they do not know what they are doing.” And they divided up his clothes by casting lots."
    Luke 23:34 NIV

    There comes a time in every person’s life when he or she needs to gradually learn how to ask for themselves what they want or need from others. For instance, my first taste of asking for what I wanted was when I was about four years old. My mom and I were at a bagel store. I wanted to get myself a “mini bagel”. I then asked my mom to get me one once we got to the front of the line. She said, “ If you can find a way to get to the front of the line in a polite, respectful, and courteous manner you can ask for it yourself.” So, I said please excuse me to every customer in front of me and when I finally got to the front of the line. I politely asked the employee If I could please have a mini bagel. As you can imagine I was overjoyed with having my prize. I didn’t realize at the time that later in my life I’d realize that Self Advocacy was part of my life purpose.

    As a Boy Scout earlier on in my life. I always had to treat everyone with kindness, love, and respect. When I needed assistance in order to complete merit I learned to partner with others to complete the badge. We were taught in scouts to do a good deed daily for someone else. In turn, the other person is willing to help you out. 

    One lesson I have learned in my life is not to act impulsively without thinking or consulting someone prior. The key thing is to have patience and release control over the desired outcome once we do that things flow a lot more easily.

    You’re probably asking yourselves how do I find the balance between depending on others and going ahead without their help or advocating for yourself. From my own experience, it takes patience, resilience, and never giving up. When asking for what you want it’s important to ask in a calm, polite, and respectful manner. There is a famous statement that illustrates this point perfectly. “You get more with honey than you do with a sting.” Everything takes time to get things done. 

    To sum this all up, With patience, a calm demeanor and resilience one can achieve anything their heart desires. May we all one day be able to ask for what we want confidently.

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  • America’s Cancer

    America’s Cancer

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    I want to start this post with this thought, some of you may not agree with me at all, but I think it speaks to the greater point. Everyone praises the freedom of speech granted to us by the first amendment of the US Constitution.  I use it every time I  click publish on one of these blog posts. I know there are people out there who don’t like what I have to say, and that is perfectly fine with me. These freedoms are guaranteed for all American people, not just the ones that agree with you. For the record, I did not vote for former President Donald Trump, but I believe it was wrong to have his Twitter account removed. We both have the same freedoms.

    Pray that I may proclaim it clearly, as I should. Be wise in the way you act toward outsiders; make the most of every opportunity. Let your conversation be always full of grace, seasoned with salt, so that you may know how to answer everyone.
    Colossians 4:4‭-‬6 NIV

    Everything is being canceled! from Dr. Seuss to Mr. Potatohead. Everything is offensive to someone else.  Do we need to learn to communicate telepathically? This way we can get rid of all social media platforms and no one would get offended. There’s something I don’t understand, if we live in a Democratic Republic government where everyone gets a vote, then why are individuals being censored for their thoughts and ideas as if we lived in a socialist government? So many people have been put in Facebook Jail” because some algorithms do not agree with the post. Their freedom of speech was suspended without due process. That doesn’t sound very American to me. Cancel Culture is not a movement it is a cancer-killing the American dream.

    I think we’re living in the early days of the actual life of Hunger Games. For those of you who live under a rock. The Hunger Games is a series of novels and movies where a young lady leads the rebellion against a totalitarian government in a dystopian future. In the movie’s surprise ending the protagonist kills The president of the new rebellion after learning she was planning to enact some of the same policies as the old regime, ensuring that everything would truly start fresh. I’m not saying that we should all go practice our archery skills in case we get called to represent our districts, but things are occurring that I feel we should be worried about. I do not mean this to be a political blog and I am bipartisan all the way. I love this country with all my heart. Someone like me could thrive nowhere else. Everyone picks on Jeff Bezos because he’s a multi-billionaire, but thanks to Amazon I was able to publish my first book and have it shipped all around the world. Yes, they take a percentage of my profits but how long would it take someone with my disability to print just one book? It is not a question of convenience it is a matter of accessibility.

    America does not have the best past, but if we erase it all then how are future generations supposed to learn from it. Education is how we stop Ignorance, bigotry, and hate. If you spill a glass of milk, throwing out the milk carton does not get rid of the smell that was left by it. Only cleaning it up can do that.

    Why would you waste the milk that was still left in the carton? Just like black history needs to be taught in school, so should disability history. Children should know why the N-word is wrong. They should also learn why the R-word is wrong. Disability doesn’t care what color you are on the outside. It can be the ultimate equalizer.

     So don’t take down statues of Confederate soldiers, take the children to see them and tell them what was wrong. Then take them to the Institutions and let them hear the stories of those who were abused and still are being abused. We all need to learn real tolerance and appreciation for someone’s struggles, not just appeasement. It’s okay to disagree, it doesn’t make the other person “the bad guy.” We all deserve dignity and respect. Ask any singer or actor. There will always be hate and ignorance in this world that does not mean we have to lose respect for others On a purely human level. May God bless you and enjoy the rest of your 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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  • 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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  • Subconscious Genocide

    Subconscious Genocide

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    Hello once again, I hope your Wednesday is going well. The reason I wanted to wait till March to relaunch my blog is that March is known as disability awareness month in the United States. It’s usually seen as a celebration of how far our community has come in the last few years. I want to use this opportunity and this platform to bring attention to those of us that have been forgotten. Not everyone can post on Instagram or come up with a fancy new hashtag. Those of us who can speak must stand for those who have no voice.

    A few weeks back in a nursing home In Sussex County New Jersey Just under 200 individuals with various disabilities were found locked away in horrible conditions. According to reports linked below, countless rooms smell like urine and feces. By the time most of you are reading this the world is probably moved on to the next story and lawsuits have already been filed what about the people themselves? What are their stories? Has their suffering ended or did they just get transferred from the facility where they’re still going to be abused? I know the system is overwhelmed and understaffed but that said the reason why this happened. Instead of Googling the latest TikTok craze, I asked that you take a few minutes to investigate this. This is not an isolated incident. I think what hurts the most, is that this situation keeps recurring. The coronavirus pulled back the curtain on this horror show.

    Generalizing something like this happens, when an individual with an intellectual disability suffers a stroke. They do not recover fully and because the system does not have enough medical group homes They are forced into these programs that cannot meet their needs accordingly. Having a disability is not equal to aging.  I once knew a man who went through this exact scenario at 55. participants from his day program were the only visitors. I am saddened to say he’s no longer with us. I believe he didn’t make it to his 60th birthday. This took place years before there was a global pandemic. Who you think anyone went to his funeral?

    “Blessed are the merciful, for they will be shown mercy. Blessed are the pure in heart, for they will see God.” Matthew 5:7‭-‬8 NIV

    There are plenty of systemic issues because the system is not centered on the person It’s focused on protecting itself from lawsuits and avoiding blame at all costs. The human service industry In its entirety at a given point took on its own life force. It has become a runaway train coasting down the track. What can we do to stop it? I don’t have the answer to that but I can tell you we need to focus on the little things. There’s no reason why the staff cannot take the clients out on a walk. I’m not exaggerating, read the articles for yourself. 

    The reason why this subject hits so close to home is, I know If it wasn’t for my family This could have been me. Imagine going to bed but never being able to get out of it. We don’t see value in people with disabilities. I tried to think of a creative comparison, It’s not like prison because they have committed no crime. It is different from slavery because no one is benefiting from their silent pain. We have created a subconscious genocide by ignoring those who need us the most. Wake of America!

    Source Material:

    https://www.nj.com/news/2022/02/nearly-200-people-are-locked-down-living-in-inhumane-conditions-at-nj-nursing-home-advocate-says.html

    https://www.nj.com/news/2022/02/residents-lives-at-extreme-risk-feds-say-as-they-threaten-to-essentially-shut-down-troubled-nj-nursing-home.html

    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. ✨