Hello readers, I want to wish you the best day ever. I know I’ve been absent for a few months. I’ve been dealing with severe respiratory issues. I was short of breath and without a voice for most of the summer, instead of spending my days at the beach or a park. I spent my days with a neti pot and a series of nebulizer treatments. My birthday was not spent with a cute girl, I spent it in Urgent Care trying to breathe. Honestly, I’m still not 100%. I Have something in my heart that I know someone needs to hear. I decided to move my weekly blogs to Thursdays and my next podcast will be released on September 15, 2024. My bonus newsletter will be released every Sunday As usual. I thank you all for your patience.
The word tokenism, according to Google, the word tokenism is defined as ” The practice of making only a perfunctory or symbolic effort to do a particular thing, especially by recruiting a small number of people from underrepresented groups to give the appearance of sexual or racial equality within a workforce.”
Expressions such as these are why I started this blog in the first place because so often people with disabilities are used as “tokens” to make us feel empowered while we are viewed as less than. When I joined the New Jersey Council on Developmental Disabilities and gave my oath of office I specifically asked God for the wisdom and strength to carry out all the duties asked of me. It was important to me to earn the spot I was appointed by the governor’s office. From 2017-2024 I served as the Vice-Chairman Of this organization. In a summer filled with disappointments and broken plans because of my illness this hurt.
Did they not know I was up until 11:30 The night before going through emails? Did I lose value to my colleagues? Was I just a token? I didn’t like to lose. I felt like I had earned that position with all the work I’ve done. After the meeting, I called the man who won the election. I was not upset with him Just the situation. I did it to help me move on. He didn’t answer so I left a message. I thought that would be the end of it.
Ecclesiastes 3:1 NIV [1] There is a time for everything, and a season for every activity under the heavens:
When I woke up the next morning he left a message on my phone. He was so overjoyed. I feel he needed this victory more than I did. I learned a lesson that day. I saved the message on my phone to make sure I remember it for years to come. If my dream is to become a public servant, I must be selfless instead of selfish. Maybe I’ll get elected again next cycle, maybe I won’t. It’s not up to me it’s up to the people. Maybe another opportunity will open up. I cannot give up and can not be the honored guest at my pity party.
So often people lose their lives because they’re so busy worried about the things they don’t have anymore. Don’t close yourself off the new opportunities. As always thank you for reading. Please leave a comment.
Hope you guys are having a great day. You guys will be seeing this the day after I have spoken at the White House in Washington DC. Yes, the Little old man got to speak at 1600 Pennsylvania. As part of a panel celebrating the 25th anniversary of the Olmstead decision. Avenue! Glory be to God. Here are the two questions I was asked and my responses. You will find the link to the entire event HERE
Colossians 4:6 NIV [6] Let your conversation be always full of grace, seasoned with salt, so that you may know how to answer everyone.
Question 1
1. [All – 2 minutes/panelist]: Thank you all for being here. I’d like to begin today’s discussion with a two-fold question. Can each of you talk about your journey: what barriers have you encountered throughout your life and how has that shaped you as an advocate today?
Thank you Anna and thank you to the Biden-Harris administration for this opportunity to mark the 25th Anniversary of the Olmstead Decision. There is a saying in the disability community, “If you know one person with a disability, then you ONLY know one person with the disability”. Like a few of my fellow panelists today I was diagnosed at birth with Cerebral Palsy (CP.) If you examine our day-to-day lives you will find some similarities. We use wheelchairs. We all came here with our Direct Support Professionals (DSP). We need help with transfers, bathing, and other daily tasks. Those are the kinds of things people imagine when they think of those with disabilities. Some people believe that we are helpless. I began my advocacy journey because I wanted to change misconceptions. Ladies and gentlemen, I am Puerto Rican. I immigrated here with my family in 1991. You may be thinking of the same story “We came here for a better life.” My story comes with a bit of a twist, my twin brother Abner and I live with the same diagnosis. As with most twins, we are opposite, I am right-side dominant and he is left-side dominant. We both have different personalities, different goals, and most importantly, different needs.
As I got older, I had to balance the big picture and what obstacles were directly in front of us. Every day presents its share of obstacles, that’s what the mission is. That is the duty of a disability advocate to face each day and push through the challenges in hopes that you are paving a smoother road for someone else.
Getting active and involved as a self-advocate has been a game-changer for me. I currently serve as the Vice Chair of the New Jersey Council on Developmental Disabilities (NJCDD) and the chair of our Council’s Grants Committee. This is another opportunity for paving the road ahead.
We must keep in mind that according to the Centers for Disease Control (CDC), one in four Americans is diagnosed with at least one disability. That is a quarter of the population. We are your neighbors, we are your family, we are your friends. Our opinions matter, our stories matter, and our voices matter. Ultimately, I became an advocate because I was tired of seeing people I know feel stuck and isolated because they didn’t have a chance to be heard. I traveled here today to be heard and I appreciate your listening.
Question 2
[Kevin Nuñez – 4 minutes each]: For people with disabilities watching this live stream, the idea of being a disability advocate can be a little intimidating. How did you get started in advocacy? What closing words of advice can you offer?
Kevin will talk about his advocacy through the New Jersey Developmental Disabilities Council, and the power that people with disabilities and other allies can have by working together to challenge ableism, hold elected officials at every level of government accountable, and advocate for budgets and policies that advance the rights of the community.
As a person with a disability, there are certain aspects of life I have to accept. I cannot get out of bed alone unless someone physically gets me out of bed. I know there are many things in my life I cannot do for myself. The term “learned helplessness” is real. Thankfully I found my way to learn how to help myself and others by writing a book, hosting a blog, and in my role as Vice Chair of the New Jersey Council on Developmental Disabilities. At NJCDD, we are paving the way with advocacy, systems change, and capacity-building activities. There are many examples to share, but I will focus on a few that have had an impact on meeting our Council’s goals and challenging ableism.
Six years ago, NJCDD funded a project to educate state officials and the NJ legislature about the significant role and responsibilities of Direct Support Professionals (DSPs). Providing education about DSP’s critical job functions paved the way for DSP recognition and the legislature included direct support professional wage increases in the state’s budget for the past six years. As a Council, we advocated, changed perspectives about the vital work of DSPs, and lifted some of the societal biases and discrimination against people with disabilities in the process.
Just before the COVID-19 pandemic that shuttered the disability community and locked most of us in our homes, the Council spearheaded and launched a bipartisan NJ Legislative Disability Caucus along with almost 40 members of our Senate and Assembly and an additional 45 supporting organizations. The main goal of the Caucus is that lawmakers form relationships with the people impacted by their work and consider the needs of people with disabilities before making laws. We were successful as a state in extending school for up to three years for graduating special education students who could not meet their educational goals due to COVID-19. Legislative Caucus members heard us and passed a bill allowing students to extend their educational entitlements. Around the same time, I participated in interviews and met with members of the legislature to address my experiences as a student with disabilities and the lack of proper planning to have me safely evacuate during school emergencies. Well, I can tell you today that because of advocacy and educating lawmakers, our state has a law that now requires school district emergency planning to better ensure the safety and security of students with disabilities.
Today we commemorate the 25th Anniversary of The Olmstead Decision. Two women used their experiences and voices to make a difference for others before judges and lawyers.
We must help each other and pave the way.
In closing, don’t live in fear because of your disability… find your abilities. Get involved with your Council on Developmental Disabilities because years ago, someone took a chance on a kid who had given up on college. Now, I sit here today in the White House! It is time for others to make a difference for the next generation. Don’t just sit at the table where the decisions are made but lead the discussion. Dream big and be great. Don’t be afraid! Never give up!
On the summer finale of The Purposely Broken World. Kevin breaks down ableism and fear with disabilities. thank you all for all the support this year I will be back with more episodes in September click on this link for more information. if you want to support the podcast.
As a child with a disability, I attended mainstream classes all my life. One memorable class was DARE (Drug Awareness Resistance Education), aimed at preventing drug addiction—a fear shared by all parents. This program made me realize the importance of early education on critical issues. Just as children learn about the dangers of drugs, they should also be taught about disability etiquette and inclusion from a young age.
Children’s natural curiosity about differences should be nurtured, not stifled. When a child asks about someone with a disability, parents often shush them out of discomfort. This only perpetuates ignorance. Instead, open discussions can foster understanding and empathy. I recall a time at a mall with my brother Abner and our caregivers. We exited an elevator and overheard a father tell his son, “Thank God you’re not like them.” This comment stung, but more than that, it made me pity the man for his ignorance—a product of likely never having been exposed to individuals with disabilities.
The disability community is the largest underrepresented and underserved group in the U.S., encompassing every body shape, skin color, sexual orientation, and gender. Despite this, society often ignores us to avoid disrupting their busy lives. Disability is not going away; it’s a natural part of the human experience. Everyone is only “temporarily able” and might need help eventually.
Living with a disability means no days off; it’s a constant presence. Every day, I face frustrations and struggles. In school, I wasn’t just the last picked for dodgeball—I was excluded entirely because it was deemed “too dangerous.” In home economics, while others learned to sew, I was switched to a different elective because the teacher assumed I couldn’t use the sewing machine pedal. I was never given a chance to adapt or prove my abilities.
Ableism limits growth for societal convenience, imposing barriers that exclude rather than include. Consider the story of Judy Heumann and the 504 sit-in—a pivotal moment in American history that highlights the fight for disability rights. Stories like hers should be part of our collective knowledge, teaching us about resilience and the importance of inclusivity.
Exposure to disability issues from a young age can normalize differences and reduce stigma. Integrating disability awareness into education can help children grow into empathetic, informed adults. The more we see and understand people with disabilities, the less “other” they become.
Our society must recognize that disability is part of the human condition and that inclusivity benefits everyone. By breaking down barriers and challenging ableist attitudes, we create a world where everyone has the opportunity to thrive. We must move beyond fear and ignorance to embrace a future where all individuals are valued for their unique contributions.
For the majority of my 20s, I wasn’t partying or drinking on the weekends. I was attending a series of habilitation day programs. I know most people don’t know what that is; don’t worry, I didn’t know what it was either until I got there. The easiest way to describe it is as an adult daycare for individuals with disabilities. This blog is not about me, but the impact “Baby Doll” had on me and those around her.
Every so often, we come across someone whose life story is so hard to believe that part of it becomes a legend. Baby Doll was a strong African American woman. She was petite, but her heart was three times bigger than she was. Unlike most people, she was not afraid of letting the world see her heart. If she knew you, she would love you! She did not care what your skin color was. Gay or straight, that had no consequence. Every day, she hugged anyone. Oh, how I miss those hugs.
This story needs to be shared because there’s a large sector of the disability community that has been neglected and has become less human. This makes me feel so angry. I chose the alias “Baby Doll” because that is what she called all of us who attended the day program. We knew who she was talking to just by the way she said the words “Baby Doll.”
Those of us who can help others must fulfill that responsibility. Baby Doll was born completely “normal,” a pure product of her environment. Her own family forced her into prostitution and drug use. This did not take place in Russia or some third-world country—right here, in the land of hot dogs and the New York Yankees!
She was eventually burned alive by the waste. After her brain was fried and her body was all used up, she was given over to the state of being an adult. When you’re given a court-appointed guardian, you can’t even get a library card in your name.When I met her, she was a shell of her physical self. Her wonderful smile had no teeth. She seldom wore short sleeves, even in the summer. Baby Doll had gray, thinning hair. She used a small collection of wigs. The nicest one she had, she wore to her funeral.
The Lord your God is with you, the Mighty Warrior who saves. He will take great delight in you; in his love he will no longer rebuke you, but will rejoice over you with singing.” Zephaniah 3:17
Yet there are a few aspects of disability life of which people should be aware. Do you know what people with disabilities have in common with prisons and communal settings? The government pays for all essential parts of life. The participants are paid less than the minimum wage. Most importantly, the individuals are denied some critical freedoms. Let me be clear. We do need more medical and behavioral facilities for those with severe needs. We are past the crisis point where we need quality caregivers who deserve a decent wage. The system is so focused on protecting itself. It denies flexibility to the human element.
The June 1st episode of The Purposely Broken World is dedicated to those who are nonverbal or do not communicate using typical means. Everyone has a voice some just use it differently. This podcast is about acknowledging and creating awareness for those who have been neglected for far too long. If you know someone who is nonverbal or needs to know how to better communicate with someone who is, this episode is for you. All comments are welcome don’t forget to like and subscribe.
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