Jensen Caraballo

Waking up in the morning feels like rebooting an old computer that desperately needs an update.

My wheelchair is faster than your Wi-Fi, but somehow people still walk in front of it.

Every door with a heavy push button is my mortal enemy.

Why does every supposedly accessible bathroom feel like a labyrinth designed by a prankster?

I’m basically a Jedi when it comes to using grabbers to fetch stuff from across the room.

“Can I help you?” is code for “I don’t know what I’m doing, but I’m going to try anyway.”

Doctors always say, “Wow, you’re so strong,” and I’m like, “Thanks, I do emotional bench presses daily.”

Elevators are my best friends, but when they break, it’s betrayal at the highest level.

Airports are like Hunger Games for disabled people—may the odds be ever in your favor.

People love to call me “inspiring,” but I’m just here trying to order tacos.

My power chair battery dying mid-outing is the adult version of a toddler’s meltdown.

Spinal muscular atrophy sounds intense, but really it’s just a fancy way of saying my muscles ghosted me.

I’ve got a Ph.D. in adapting and a master’s in turning awkward situations into comedy.

Finding accessible parking is like playing a very stressful game of hide and seek.

Every ramp I see is either a lifesaver or a death trap—there is no in-between.

When people crouch down to talk to me, I feel like they’re about to propose or tell me a secret.

I’ve perfected the art of balancing sass with charm—it’s a survival skill.

Living with SMA is like playing life on hard mode, but with an unbeatable sense of humor.

Some days are tough, but honestly, I’ve survived worse—like Windows 95 crashing mid-paper.

Life with SMA isn’t just about surviving; it’s about thriving in the most unpredictable, ridiculous ways.

Millions of Americans are priced out of homes and apartments. For people with disabilities, finding an accessible place they can afford can be even more challenging. Judy Woodruff reports on the affordable housing shortage for our series, Disability Reframed.

Dear Journal,

The morning has unfolded quietly in my room, the stillness occasionally punctuated by the distant sounds of the waking city. Rochester's winter chill seems to seep through the walls, yet here I am, nestled comfortably, awaiting the arrival of 9:30 AM. That's when my bus is scheduled, marking the start of another workday.

Despite a restful night's sleep, a creeping drowsiness clings to me, perhaps a lingering embrace from the dreams that filled my night. In an attempt to shake off this sleepiness, I've turned to my faithful companion in wakefulness - coffee. Its rich aroma and warmth seem to slowly invigorate my senses. I'm hopeful it'll do the trick.

As I sit here, sipping my coffee, I can't help but ponder over the peculiarity of this year – it's a leap year. An extra day added to our calendar, like a hidden bonus track in an album. It's a concept that's always intrigued me. Why do we add an extra day every four years? It seems to be one of those quirks of timekeeping, an adjustment to align our calendar year with the astronomical year. It’s fascinating, in a way, how we try to synchronize our human-made constructs with the rhythms of the universe.

Looking ahead, today doesn't hold anything out of the ordinary, just a regular day at work. Yet, there's a sense of anticipation, a hope that today might be significant in a more personal aspect. I might be transitioning into my new role at the Regional Center for Independent Living (RCIL). It's a position that resonates deeply with my own journey and beliefs – working on Education and Outreach for the Transition Program.

This program, dedicated to aiding disabled individuals in breaking free from the confines of nursing facilities, holds a special place in my heart. Its mission echoes my own experiences and the advocacy work that I'm passionate about. But even as I prepare to take on this role, questions swirl in my mind. Is this an established program, or is it a relatively new initiative? How quickly can we facilitate someone's transition from a nursing facility to a more independent setting? What are the initial steps we take in this process? And importantly, how are these vital services funded?

I'm sure I already have some understanding of these aspects, but I'm eager to delve deeper, to fully grasp every nuance of the program. This knowledge isn't just for my professional growth; it's personal. It's about empowering others with the freedom and independence that I fought for, that I believe everyone deserves.

Well, the clock continues its relentless march, and 9:30 AM is drawing closer. I should get ready for the day. But I'll revisit these thoughts later, maybe flesh them out a bit more. For now, it's time to embrace the day, leap year and all.

Until next time,

By Jensen Caraballo

January 1, 2024, marks a momentous milestone in my life – it's been 11 years since I left Monroe Community Hospital, a day that signified the beginning of a new chapter of freedom and self-determination. Reflecting on the past, the memories of my struggles to gain independence are still vivid. The journey was arduous, filled with extensive letter writing, attending fair hearings, court dates, and giving testimony. These steps were not easy; they were battles for my civil rights.

The feeling of entrapment within the institutional walls was overwhelming. I remember the despair, thinking that the rest of my life would be confined within those walls. However, witnessing other disabled individuals living independently sparked a fire within me. I thought, "If they can live freely, why can't I?" This question became the catalyst for my fight for independence.

Throughout this journey, organizations like the Center for Disability Rights and the Regional Center for Independent Living were invaluable. Their guidance, education, and connections equipped me with the tools necessary to tackle the issue head-on. Community support and services played a crucial role in preventing a life of continued institutionalization – a life void of professional growth, personal development, and spiritual enlightenment.

Life in the institution was restrictive, devoid of autonomy and self-determination. I recall a poignant incident where I had to remove a Puerto Rican flag from my wall – a simple yet powerful symbol of my identity, deemed a 'fire hazard'. Such experiences underscore the lack of self-expression and rigid control prevalent in institutional settings.

Fast forward to today, and it feels surreal that I've been living in freedom for over a decade. It seems like just yesterday I left the confines of the facility. Since then, I've embraced a life brimming with opportunities and achievements. My roles have been diverse – from an Accessibility Specialist at the Regional Center for Independent Living to a Peer Mentor and Specialist at the Center for Disability Rights. In these roles, I've had the privilege of guiding individuals with disabilities on their own journeys towards independence.

My advocacy and influence have transcended national boundaries. A memorable trip to Japan had me traveling to Tokyo, Okinawa, and more, where I engaged in dialogues about disability issues, shared my story, and educated others about American culture and the Independent Living Movement. This experience was not just a professional milestone but a personal triumph, signifying that I had achieved what once seemed impossible.

As I continue to reflect on my journey, I realize that my initial belief – that escaping the institution was the pinnacle of my achievements – was naive. There is so much more that I have accomplished and so much more to achieve. The story of my journey from confinement to freedom is ongoing, and I look forward to sharing more in the future.

Hello, Tumblr Community!

I'm Jensen Caraballo, a passionate advocate for disability rights and accessibility. Today, I want to share my journey and insights into how we can collectively foster a more inclusive world.

My Story: From Constraints to Liberation

At 15, life presented a challenging twist: I was placed in a nursing home. This experience, while tough, ignited a fierce desire within me to advocate for disability rights. After six years, I broke free from institutional living, embracing my independence in the community.

Disability Rights: The Heart of Human Rights

Disability rights are not a separate entity from human rights; they are integral to the fabric of equality and justice. As an Accessibility Specialist at the Regional Center for Independent Living in Rochester, New York, I've witnessed firsthand how vital accessibility and ADA standards are in building an equitable society.

The Pillars of My Advocacy

Accessibility and Inclusivity: Every public space, like Salvatore's in our community, must be fully accessible. It's not just about compliance; it's about valuing every individual's right to participate in society fully.

Ending Institutional Bias: The bias towards institutional care over home and community-based services needs to end. Independence and support in one's own community are not just preferences; they are essential for dignity and quality of life.

Raising Awareness and Standards: As part of my goal to get a raise and further my impact, I'm delving deep into accessibility codes and ADA standards. Knowledge here is power – the power to bring change.

Support and Solidarity: Advocacy isn't a solo journey. It's about community, support, and shared voices. Whether it's disability rights, Black Lives Matter, or advocating for legal abortion rights, it's about standing together for justice.

A Personal Reflection

Living independently with community-based services and support, I've realized that true empowerment comes from within and is amplified by the support of others. My hobbies – reading, writing, listening to music, and watching TV – are not just pastimes; they are channels through which I gain strength and inspiration.

Call to Action: Be an Ally, Advocate, and Activist

Join me in this movement:

Educate yourself on disability rights and accessibility.

Support local businesses in becoming more accessible.

Advocate for policy changes that promote independence and inclusivity.

Share stories and voices of the disability community to raise awareness.

Together, We Can Make a Difference

Change begins with awareness and is fueled by action. Let's work together to create a world where everyone, regardless of ability, has equal opportunities and is valued equally.

Thank You for Being Part of This Journey

Your support, whether through reading, sharing, or engaging in advocacy, means the world. Let's keep the conversation going – for a more accessible, inclusive, and just world.

*Dear Diary,*

Happy New Year! Today marks the beginning of 2024, and I'm already feeling the fresh energy of a new start. Last night was a blast – I welcomed the year with Lamynne and my mother. We really got into the festive spirit, enjoying some drinks and blunts. There's something about the laughter and warmth of family that makes such moments unforgettable.

Reflecting on 2023, it was a monumental year for me. Meeting the love of my life was undoubtedly the highlight. Love has a way of reshaping your world in the most beautiful ways, and I'm grateful for that. Professionally, I hit a significant milestone by securing a career that aligns with my passions and values. It's been a journey of positive transformation, and I'm proud of the strides I've made.

Looking ahead, 2024 is brimming with potential and dreams. My heart is set on some life-changing goals – moving to a new place, marrying the person I adore, and starting a family. The very thought of these milestones fills me with excitement and a bit of nervous anticipation.

This year, I'm also committing to a personal challenge – writing consistently. I've always believed in the power of words, and now, I'm channeling this belief into action. My plan includes publishing a book and starting a podcast. Sharing my thoughts and experiences with a wider audience is both thrilling and a bit daunting.

In addition, I'm starting these daily journal entries. It's a space for me to be raw and honest with my thoughts. I'll be using ChatGPT to give a creative spin to my entries – can't wait to see how this AI collaboration turns out! The idea of doing writing sprints excites me. Just pouring out my thoughts without any filters or time constraints feels liberating.

I've decided to post these entries on Tumblr. It seems like the perfect platform to share these personal snippets of my life. I'm looking forward to connecting with others who might find resonance in my words.

2024, here I come – with open arms, a hopeful heart, and a pen ready to capture it all.

*Here's to a year of growth, love, and endless possibilities.*

*Jensen Caraballo*