Category: Disability Awareness

  • The Double Edge Sword of Identity

    The Double Edge Sword of Identity

    What makes a person who they are? Is it their gender? Is it their sexual orientation? Is it their ethnicity? Is it their faith? Is it the legacy they leave behind? Is it the way they’re perceived? Identity politics cannot define a human being As a Christian heterosexual Latino male with a developmental disability, I’m well aware of the labels society has put on me. Can you see me as Kevin?

    Gary Rubin, former SABE representative.

    “Labels are for soup cans, not people.” –Gary Rubin.

    On the back of my business cards is a photo of myself with the quote, “Look at the person, not the disability.”

     This is how most people perceive me. My disability does not define me; however, it is a significant part of my identity that I cannot separate from myself. Likewise, I cannot hide my Puerto Rican heritage or my love for Jesus Christ. A person cannot be defined by just one trait. It is the intersectionality of all these characteristics, combined with their experiences, that shapes who a person is.

    'And why do you look at the speck in your brother’s eye, but do not consider the plank in your own eye? 'Matthew 7:3

    It’s wrong to judge or to have any bias. The fact is we  all judge and have unconscious biases. I am seen as an inspiration or as a token for society. Someone who looks like me should be offered more jobs than just the greeter at Walmart. I’m aware of how blessed I am. I know I was put on this Earth to be the voice for others. We all have gifts and blessings that others desire. 

     The label of “disability” is the one I have to wear to have access to programs such as Medicaid and Medicare. It has never been about a check in the mail, it is my key to life. Without it, I don’t have caregivers to get me out of bed in the morning. In my life, I’ve employed anywhere from 20 to 30 different Direct Support Professionals (DSPs). Supporting individuals with disabilities does contribute to both local and federal economies.“Medicaid dollars”  helped me make notable accommodations to my home so I could live in a community and not be locked away. This will save taxpayers money in the long run. Any cuts or caps to these programs would be a slow death sentence. I have the same right to live as anyone else, but to do so, I have been placed in a societal box.

    The elimination of Diversity, Equity, and Inclusion (DEI) initiatives is extremely damaging to the disability community, which has long been fighting to be seen, heard, and represented. Inclusion is more than just ensuring a certain number of people attend a specific event or hold particular positions; it’s about recognizing the person as a whole. Representation matters, but it must be approached carefully and purposefully to avoid confining ourselves to more boxes.

    I know I’ve said a lot in this post, and I hope this can spark a series of conversations—that’s what I want. People from different ideologies need to start working and talking together. Democrats and Republicans are not evil; they’re human! Don’t categorize people. Don’t judge others before you truly get to know them. Learn to see the whole person, not just certain aspects of what you observe on the surface. Thanks for reading, and I’ll see you next time.

  • Land of new Opportunities

    Land of new Opportunities

    There is a new day in America, will people living with disabilities be part of it? It’s been less than a month since the new administration has assumed power. America’s voice was heard loud and clear. Congratulations to President Trump, the new Congress, and the new Senate. I look forward to working with all of you. Democracy can only work if the people are equally responsible for holding those in power accountable. The Constitution is more than a piece of paper; it is a contract between the government and its people. As an American, I think we live in an exciting time. I understand and acknowledge that there are lots of scared and anxious feelings. These are valid feelings.

    Democracy is more than voting every two years. To make a difference we have to do more than just make a post on TikTok. We have a new opportunity to educate, collaborate, and advocate for all people regardless of their abilities. We must get to know our elected officials. Instead of complaining, start a conversation with a tangible goal. We must learn to compromise and build off of the success of others. Don’t assume people are against you. You cannot judge those who don’t understand. Get to know the person you’re speaking with and relate to them to find out what’s important to them. Do your research before meeting with them. It’s time for us to show there’s more to us than disability.

    'Blessed are the peacemakers, For they shall be called sons of God.'
    Matthew 5:9

    So often, our community talks to itself and then gets upset when others, don’t understand us. In some ways, our community has become complacent over the last few years. The Americans with Disabilities Act ( ADA) was not meant to be the end of the disability rights movement but the beginning. It is time for us to be seen and heard as decision-makers. We need to organize as a community and decide what the next step is. advocacy organizations from across the country need to stop isolating themselves and work together. We are not just a puff piece at the end of the local news. Bring those in-power solutions instead of problems. Collect data and tell people’s stories. Put a face behind each set of numbers you present.

    The power of the country lies in more than who sits in the Oval Office. The power is with its people. I understand we can not all run for Congress. However, we can go to our local town council meetings. if a position on the school board opens up and run for that. We must speak when we are given the floor. Disability needs are more than curve cuts and elevators. However, people don’t know that. Remind your neighbors that disability is part of the human experience. Some folks with disabilities cannot stand up but maybe we were born that way to stand out!

  • Sitting in the Air

    Sitting in the Air

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  • My Voting Experience

    My Voting Experience

    Yesterday was election day in the United States of America. I love this country and am so proud to be American. This blog is not going to focus on any other election day results but rather on my personal experience as a disabled voter. It was amazing!

    I’m almost 40 years old, so I have been voting since the 2012 general election. Usually, it’s very quiet and subdued at my polling place. I acknowledge that being a coworker is not easy. If I’m honest, previously, I’ve had limited interaction with them. They don’t usually say much after you sign your name before stepping into the voting booth. There are roughly about 32,000 people in my town. Before yesterday there was little turnout in my district. I never kept track but I feel there’s never been more than 10 or so people in line to vote when I’m gone. I’m not saying people in my township don’t vote I’m saying you don’t see them. I was expecting more of the same this year.

    Mark 12:31 NIV [31] The second is this: ‘Love your neighbor as yourself.’ There is no commandment greater than these.”

    After a medical appointment and running some errands, I arrived with my family around 6:30 p.m. There were easily over 250 people in line. We went to the back of the line and began to wait. For those of you who don’t know, I have a twin brother who also uses a wheelchair. One of the poll workers saw us and asked if we needed assistance voting. We informed her that we didn’t mind waiting we knew it was part of the process. I never knew there was a different entrance for the elderly and disabled at this polling place. It was nice to be recognized and accommodated. There was still a line but this one was accessible. It was not overwhelming. Fortunately, I don’t have sensory issues, but if I did, this would have been much safer. A shorter line is not about convenience.

    My identification was verified along with my address to make sure I was in the right polling place. My brother could not reach the tablet to sign his name because the court would not stretch that far. Our father had to sign on his behalf. He had to document himself as our assistant. To sum this might seem like a hassle but it was nice to know my vote was safe and secure. My brother does not have the best communication skills so it was good for him to have my father as an assistant instead of having to communicate with someone else. Our father has always assisted us during the voting process, but it was never documented before. These extra steps matter. They assure equity and equality.

    As an individual, I know my voice as a US citizen was heard. Regardless of who is living at 1600 Pennsylvania Avenue come January. I’m still going to live with disability I’m still going to have to fight for my rights. I know I did my part in the Democratic process and I did my civic duty. This country does not ask much of me. I was happy to cast my balance! Thank you for reading and may God bless America!

  • Perseverance & the Big Picture

    Perseverance & the Big Picture

    Sometimes, in the race of life, you cannot see the finish line or the bigger picture. In the second podcast of October, Kevin breaks down his experience going to the White House for a second time and his mission in life. Sometimes, faith, hope, and love are all you need. All comments are welcome let me know what kind of content you guys want to hear about next.

    SHOW NOTES

  • The Math of Disability

    The Math of Disability

    2024 is shipping up to be my best advocacy year! In October, this blog reached 3ed its anniversary. The podcast will be 3 years old in January. I was honored to be invited to the White House to speak. I’m optimistic that I can finish the first draft of my second book by December. I serve on both state and National disability advocacy boards to improve the lives of my brothers and sisters with disabilities. What does all this success add up to? As far as this world goes, less than Zero. I don’t want to be Logan Paul or Joe Rogan I just want to live. I live a backward life and I love it

    I have over 160 followers on this website. On average only 30 open the blogs when it is sent to their emails. About 12 folks listen to the podcast regularly. I started a bonus newsletter, and I have four subscribers. Last week, I looked in my bank account. I have more money in there than ever, thanks to book sales, and other projects I’m involved with. It’s less than $2,000 because I must stay legally broke to maintain my Medicaid eligibility. Money matters in this life how can I live?

    Matthew 16:25 NIV 25] For whoever wants to save their life will lose it, but whoever loses their life for me will find it.

    I did the math. I need roughly $100,000 to employ caregivers and other long-term support. This does not include rent, food, or utilities. To live as independently as possible, I estimate I would need about $150,000 a year, assuming I have no debt.

    Some of my dream jobs include being a translator at the UN. The top-level translator makes approximately 54,000 a year. That’s not going to cut it. The average legislative aid salary in Washington, DC, is $ 78,000 a year. That doesn’t work either. 68,000 a year is the average salary of a paralegal in New York City. Nope, that still doesn’t work. Let’s try one more: in New Jersey, a social worker makes just under 64,000 a year at the top level.

    Photo by MART PRODUCTION on Pexels.com

    To be clear, it is possible to work and keep your benefits at the same time, but it is purposely dangerous to navigate this system. It’s like navigating a minefield naked. For most of us, we have to call our benefits counselor twice a month feeling like the Orphan Oliver “Please sir, may I have some more?” something doesn’t add up.

    It costs 20 to 25% more to raise a disabled child some people out there think that individuals like myself should not be allowed to live. I think it’s because of the financial burden. People like me just want a chance to live to show you that we can do more and be more than you ever expect because life is not about numbers it’s a journey to learn and grow every day. There is a Bill in Congress right now to raise the asset limit from $2,000 set in 1983 to $10,000. This would be a very small step toward equality but people don’t even know about it.

    Photo by RDNE Stock project on Pexels.com

    We have men and women fighting all over the world to protect our freedom. As Americans. Disabled Americans need to rise and have their voices heard so we can be financially free and have the same opportunities As Americans. America does employ two models of socialism. Prisons and developmental centers. The government provides all the essentials to live, but there’s one thing missing: freedom.

    Where are the warriors of the Next generation to make sure that this vital population of America does not get left behind? I love my disabled life and I’m thankful for it because it’s taking me so many places and showing me the real value of life. Americans need to stop being afraid; they need to live; they need to help others live. Mr President and other elected officials help us streamline the disability system so we can do our part to take care of those who are more vulnerable than me and live a joyful American Life.

  • My Big Bang Problem

    My Big Bang Problem

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  • Body Talk

    Body Talk

    Greetings once again to all my readers. I don’t just enjoy writing blogs; I love reading them, too. Recently, I came across an inspiring post by Lily Pierce, a remarkable woman who lives with a disability. She wrote a powerful piece on how we perceive our physical appearance, and her words deeply resonated with me. I’ll include a link to the post for those interested. Lily’s post sparked an idea within me—one that I want to share today: a letter to thank my body for everything it has done for me, even when I’ve taken it for granted.

    When people first see me, they may notice someone standing no taller than five feet, with little hair on my head since my twenties—but plenty elsewhere! Grooming can be awkward for anyone, but imagine having to ask for help to do it. That’s my reality. Some people may focus on the scars I carry from countless surgeries, or how no matter how much time I spend at the gym, I’ll never regain the six-pack I lost at sixteen.

    I often joke that it’s only my body that’s broken—not my mind or heart. Of course, I know that’s not entirely true. But humor has always been a way for me to embrace my situation and make light of things. In a world that often values outward appearances, I can’t change societal standards—but perhaps, with this letter to my body, I can inspire a shift in how we view ourselves.

    Galatians 5:17 NIV [17] For the flesh desires what is contrary to the Spirit, and the Spirit what is contrary to the flesh. They are in conflict with each other, so that you are not to do whatever you want. 

    Dear Body,

    Many hands have helped care for you—not just mine. So many doctors, nurses, friends, family, and caregivers have played a role in keeping you strong, and I thank you for accepting all of them. Thank you for enduring years of medication and surgeries, and for allowing me to stay as healthy as I am today. I’m grateful that those medical interventions have lessened as we’ve aged.

    Thank you to my eyes for showing me the beauty in the world, even when others focus on its negatives. Thank you to my nose for savoring the smells of home-cooked meals, and to my ears for absorbing laughter, wisdom, and the sounds that make life rich. Thank you to my voice and lips for helping me speak up for others and advocate for those in need.

    To my arms and legs, thank you for always trying—despite the pain you endure. Even when walking or standing isn’t easy, you never give up. And as personal as this may sound, I want to thank my “male organ”—for reminding me that no matter how the world sees me, I am a man, whole and complete.

    Lastly, thank you to my feet. Though I’ve never stood fully on you, I know I would have no foundation without you.

    Our bodies may not always look or function as we wish, but they carry us through life nonetheless. For that, I am deeply thankful. Thank you for reading, and I hope you have a wonderful day.

    Note:

    This is a Rewritten exert for my first book Confessions From Disability Limbo. Exclusively on Amazon.

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  • Education For ALL

    Education For ALL

    As an individual living with Cerebral Palsy (CP), I take pride in being nonpartisan. My disability does not care if I support the elephants or the donkeys in November. Most likely, I will not walk in January regardless of who is sitting in the Oval Office. I may have been born disabled but everyone else is temporarily abled. Your body will fail, and you will need help from someone else to help you live your life. I can see both sides of most hot-button issues if you want to balance the economy ask someone who has a balanced budget on a fixed income for the majority of their life.

    I would never impede anyone’s opinions or beliefs, Please be a patriot and go vote in November. Many suggest that eliminating the Department of Education would help balance the budget and bring money back to the states. This is not an efficient way to cut down on wasteful spending. This would be wrong and dangerous for individuals and families with disabilities.

    Most Americans have never heard of the Individuals with disabilities education Act (IDEA). The legislation was revised in 1990 under a republican administration. Here is a quick overview of the law. According to Access for Special KidsResource Center (ASK)

    • Free Appropriate Public Education (FAPE)
    • Appropriate Evaluation
    • Individualized Education Program (IEP)
    • Least Restrictive Environment (LRE)
    • Parent and student participation in decision-making
    • Procedural Safeguards

    I am not ashamed to admit that I had an IEP meeting every year since I can remember. It ensured I had the proper support I needed to thrive as a student. I had a paraprofessional accompany me to every class who took my notes, helped me review materials after class, and helped me with my personal takes. I attended mainstream classes. I was not locked away in the special ed classroom. Every year some of the teachers f thought that’s where I belonged because I was a wheelchair user. I loved proving them wrong. The other students had to see me as a person not just a disability. I was a student just like them with goals, dreams, and embarrassing moments to overcome.

    Psalms 41:1 NIV [1] Blessed are those who have regard for the weak; the Lord delivers them in times of trouble.

    Disability should not be a burden on society, it should be an asset to their communities. Students without disabilities should not be afraid to approach those who are different. All children should be able to learn and help each other. That is how we build a prosperous future for America The reporter Geraldo Rivera exposed the horrors of Institutional living in the mid-80s. All these years later our population is still being Isolated. What makes one student less than another? Disabled students are placed in out-of-district schools that “specialize in disabilities.” They need to be allowed to see if they can adapt and grow with non-disabled peers before being segregated. The easiest solution is not always the best solution. There should not be a disabled population, versus a non-disabled population, but Americans. We need to move forward not backward.

  • What’s Next

    What’s Next

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