Hey there! I came across this fascinating article by Javier Robles, a respected figure in the disability community. The opinion piece challenges readers to discover a more realistic definition of disability. Dive into the thought-provoking insights shared by this Rutgers professor. In a world where we often have fixed ideas about disability, this article is like a friendly push, asking us to question what we think we know and see things in a new light.
Robles guides us through the world of disability, helping us understand it better. He asks us to think about how society sees disability and encourages us to understand it in a more genuine way. This article isn’t just about thinking—it’s a call to action. Robles wants us to talk about disability differently to challenge our ideas and make our society more understanding. It’s a chance to open our minds and be a part of a more inclusive world.
Join Javier Robles on this journey to rethink disability. Let’s change how we see things, break old ideas, and embrace a truer understanding of disability. The conversation is starting, and it’s time for us to be a part of it. Have a good day See you guys next week! All comments are welcome.
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
Happy Wednesday, my friends. This may seem a little obvious, but I love writing. I’m always experimenting with different forms. The other day, I woke up with the inspiration to write a poem. I’ve never taken a poetry class; I don’t even read poetry. This may be really basic, but most will say it’s not good. I don’t blame you. All I can tell you is the Holy Spirit wrote it; I was just the instrument based on my expenses In the comments, please let me know what you think. This was one of my first.
Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the end result of your faith, the salvation of your souls. 1 Peter 1:8-9 NIV
People say my head’s in the stars
Can’t they see I’m holding back tears
Can someone please look past the scars
I’m trying to learn how to overcome my fears
People say go on dating apps
No picture I take can hide my wheelchair
Part of me wants to snap
I can’t just wipe it away like nar
Swipe left on the phone
Doesn’t anybody care
Swipe right I still feel alone
Jesus you’re always there
Come save my life
You do what I don’t dare
You are my spiritual wife
May your glory shine
With you I always have hope
May your will be done not mine
My faith is not gone, nope
Your plan will be revealed in time
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
Greetings and happy Wednesday! WordPress.com informed me that I have been writing this blog for four years. I relaunched it with a podcast in March of 2022 The intention was to spark conversations about disability issues, both the positives and the negatives. Lately, I’ve been feeling spiritually restless, and a recent Facebook memory prompted me to reflect. Sometimes, we all need a reminder that God is watching over us, even when faced with life’s challenges. This is especially true for the disability community, which often grapples with questions like, “If God is perfect, why do people suffer from disabilities or other conditions?”
“This is my truth: I’m broke. I have bills to pay. I will always use a wheelchair, I will most likely always be single, and people will always underestimate me. Yes, it really sucks! I choose to look at all the good in and around my life. I don’t hide from everything. I just choose not to focus on things I can’t control. You might find it dumb or even wrong, but I’m proud of myself, and I love my life.”
Personal Facebook post from 6 years ago
To address this question,I want to ask the Holy Spirit to help me speak the truth. Some have accused me of lacking humility or bragging about my accomplishments. My only aim is to leave the world a better place than I found it. I don’t hold any degrees; I have only a high school diploma. I pray nightly, seeking forgiveness for any wrongs I may have committed. Just as the song says, “This is me.” I can only speak from my experiences and give my opinions.
Next, the statement about being broke and having bills to pay: It’s straightforward. I’ve never cashed a paycheck from an employer because, as I’ve mentioned before, working would mean losing my health insurance. Unfortunately, many private insurance companies don’t cover wheelchairs, and because of my Cerebral Palsy, I will always rely on one. There’s no cure for my neurological condition, and my life expectancy shouldn’t be affected, barring other complications.
Now, the part that keeps me up at night is: Will I always be single? I’ve had a few relationships, both with disabled and non-disabled women, but they’ve been rare. It’s okay to admit that I feel lonely. There’s a space in my heart waiting to be filled. I have a small bucket list of things I’d like to do with that special person. Nevertheless, I keep putting myself out there because I have faith that someone is waiting for me.
“The Lord said to him, “Who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind? Is it not I, the Lord? Now go; I will help you speak and will teach you what to say.” Exodus 4:11-12 NIV”
However, there’s something special about having Jesus in my life. It’s like having a friend who’s always there to make those empty spots go away. Just knowing that Jesus is with me helps me feel better when things are tough. So, even when life gets hard, I remember that Jesus is like a comforting blanket, filling those empty spaces with his love and warmth.
Yes, it’s tough. If I dwelled on all the things I can’t do for myself and how challenging my daily life is, I’d likely go insane. No medication or doctor in the world could heal me. So instead, I choose to focus on the little joys in life—the aroma of food cooking in my house, the sound of my brother’s laughter, texts and calls from family and friends, and checking my emails for messages from my advocacy colleagues. Negativity surrounds us daily, but the key is to seek out and embrace positive moments.
I always welcome comments and encourage anyone reading my posts to share their thoughts. Some may see me as a naive optimist, and that’s perfectly fine with me because it means you gave me the chance to show you more than meets the eye. I genuinely believe that God has a purpose for me and for all of us. Thank you for your time, and may God bless you. Thank you to my small but loyalFollowers for following me on this journey. If you feel so inclined please share
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
In the first episode for September, Kevin is excited to interview Ms. Brandy Rosly is an excellent disability advocate. She shares her story about disability and dating. What it was like to be married, divorced, have kids, and marry again all while being blind. She goes to the gym and drives a car. This is a story everyone needs to hear. Please share it with as many people as possible—links to support the podcast are below.
Is there a book you’ve read more than once? Don’t worry, this is not another shameless plug for my book. I’m going to talk about another book. Admittedly, I’m more of a movie buff than a bookworm. I can count the books I’ve read more than once on one hand. For me to do that, the book must stand out. I want to start a new series on my blog where I break down books and other sources of media featuring The disability community. I know this is not a new idea, but I never claimed to be original. For this first installment, I will be discussing the film and book Me Before You by Jojo Moyes I both love and hate this piece of fiction.
Please note that this book and film are over 10 years old, and I will be discussing spoilers. So, if you don’t want the ending ruined for you, come back and read this later Emma Clark, the female protagonist, is one of my celebrity crushes. The only reason I watched the movie in the first place was because I read the book after watching the movie. I am writing this before I purchase the audiobook. I am recommending this book and film. However, there are a few things you should know first.
Therefore we are always confident and know that as long as we are at home in the body we are away from the Lord. For we live by faith, not by sight. 2 Corinthians 5:6-7 NIV
Quick synopsis Will Traynor was once a very athletic and active young man before becoming paralyzed. His mother hires Louisa Clark to accompany him and perform some caregiving tasks, but not any of his private ones. Another caregiver looks after those. It is clear from the outset that the disabled character is depressed and missing his former life. As often happens in the beginning, they are both annoyed with each other before falling in love. After overcoming hardships and learning to trust each other with their most intimate life details, like a sexual assault that occurred to the female character, It is revealed that Will had planned and assisted suicide a year prior. Unfortunately, it does not end happily, as he follows through with those intentions.
Before I begin, I want to say I am not a paraplegic or quadrilateral. I was born with a disability. Every person is different, and every person living with a disability is different. It is not for me to say If the character is an accurate representation of a quadriplegic. I usually don’t enjoy first-person narrators. This is overused in young adult literature. Keeping this story from the point of view of Louisa not only keeps this story interesting, but it also serves as an educational piece to teach outsiders about disability. It’s okay to show that disabilities can be intimidating. Having a disability can be overwhelming at times The disability community does not serve to inspire the rest of society. No one with a disability is positive all the time. Struggles with mental health are real. People with all kinds of disabilities can have successful romantic relationships, even quadriplegics.
The idea that individuals with disabilities often harbor thoughts of suicide explains Will Traynor’s desire to end his life. This portrayal oversimplifies the complex emotions experienced by people with disabilities Just because someone has a major disability does not mean they wish to end their life. I truly believe that pieces of media like this unintentionally feed the idea That we should be put out of our misery. We are not dear on the side of the road. We are human beings with the same rights to live as anyone else.
Another stereotype the book addresses is the belief that love cannot flourish in a relationship involving a disabled person. Louisa and Will’s connection is depicted as profound and heartfelt. However, the story inadvertently hints that love can only exist in the face of pity and tragedy when one has a disability. This portrayal undermines the possibility of genuine love in such relationships.
Literature like this can inadvertently propagate negative stereotypes. When books consistently depict individuals with disabilities as trapped in despair, they reinforce biases and restrict opportunities and expectations. As responsible readers, we should approach such stories with a critical perspective and use them as a starting point for conversations that challenge these stereotypes. By doing so, we can contribute to a more inclusive society where individuals with disabilities are recognized for their unique strengths and abilities rather than being confined to harmful clichés.
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
Greetings readers, Now that summer is over and everyone is back from their vacations, I thought it’d be a good time to advocate for some systemic change. Traveling with a disability is an absolute nightmare. 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 am removed from my wheelchair and placed on the aisle seat. This is a device resembling Hannibal Lecter’s transportation flight. You can see a full description of this device in the YouTube video. Then I am placed in a regular airplane seat.
“lest you lose your honor to others and your dignity to one who is cruel,” Proverbs 5:9 NIV
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 that 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 have gone by. I do not go on long-distance flights What if I have to use the bathroom? I’d have to expose myself in front of the entire airplane. What would I do if I were a female?
A person with a disability may find it difficult to navigate an airport and board an airplane, especially if they use a wheelchair. Transfers are often difficult because traditional airplane seats are not always accommodating. These passengers’ difficulties are further exacerbated by the cramped quarters and difficult-to-access restrooms onboard.
Delta’s Air4All prototype takes a giant leap toward enhancing airplane accessibility. With the idea of removable seats, spaces for wheelchair users would take the place of traditional rows. Allowing individuals to remain in their wheelchairs not only ensures their comfort but also promotes their Self-determination. This innovation celebrates the independence of passengers with disabilities. This ground-breaking design lets wheelchair users remain in their own chairs, maintaining their comfort and dignity. Boarding and deplaning would be streamlined and much more user-friendly for the individual. This is still in the early phases, so advocates need to speak up now!
Delta’s Air4All is a beacon of hope for accessible air travel. By introducing removable airplane seats to accommodate wheelchairs, Delta is transforming the flying experience for individuals with disabilities and encouraging other airlines to follow suit. As we soar toward a more inclusive future, let’s unite to ensure that everyone, regardless of their physical abilities, can experience the joy of taking flight.Thank you for reading, and I hope to see you guys next week. You can find the sources below.
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
In the second episode of August Kevin of the Purposely Broken World, he breaks down what it was like to be a disabled student in New Jersey. This list of personal anecdotes and advice for future students should provide Liberty and information. To all, don’t be ashamed of your own disability.
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
In the first episode of August’s Purposely Broken World, Kevin brings up disability pride and what it means to him. Faith plays a significant role in Kevin’s disability Identity. Kevin recounts personal stories of discrimination.
Disability history is American history. Judy Humann, Brad Lomax, and the 504 sit-ins should be taught in schools. Financial discrimination and disability discrimination are still prevalent in today’s America. Feel free to join the conversation.
“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him. John 9:3 NIV https://john.bible/john-9-3
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
In the July episode of The Purposely Broken World, Kevin breaks down the worst day of his life to shine a light on depression and disability. Spiritual growth helped him find the light. Spiritual growth is just as important as mental and physical growth. In order to go forward, sometimes we have to reflect back. Subscribe to join the conversation.
Have you missed an opportunity, and it became a nagging thought in the back of your mind that you couldn’t shake? Not necessarily regret, simply something you always wondered about. A “what if” moment. Second chances don’t come along that often. especially if you have a disability. Most of the time, we don’t get a first chance. Well, for the first time in my life, I’ve been blessed with this second opportunity. I’m scared to take it, but I know I’m ready for it.
In case you didn’t read last week’s blog, here is a quick synopsis. In 2018, I attended the national SABE conference. Self Advocates Becoming Empowered is the leading independent advocacy organization run by and for people with disabilities. Every voting member on their board has to have a disability. The representatives divide the country into regions. New Jersey is in Region 7. Along with Pennsylvania, Delaware, Washington, DC, Maryland, Virginia, and West Virginia. At the last conference, I was given the opportunity to represent my region as an alternate. It was kind of last minute. I made a bunch of excuses and decided I wasn’t ready. The next conference was in 2020. That would have been plenty of time to make the right connections.
Honestly, over the years, I moved on from SABE. I thought it was going to be one of those moments in life. It’s been 3 years, and I haven’t had a conference due to the global situation. I was recruited to serve the region on an income basis. Until the next national conference Why me? I don’t deserve to do anything. So many people have died in the last three years with disabilities. How can I be their voice? I’m a goofball by nature. How can people trust me?
I’m a firm believer in God’s timing because it’s no coincidence that this opportunity opened back up after my big brother Jesus found me and picked me up. One of the things I have to do is put together a regional conference. A conference made up of every state that I will be representing to educate and collaborate on disability issues. Apart from all the duties of the national organization. I will not lie; I’m more than a little scared. Intimidation is an understatement.
New Jersey is a small state, and the advocacy community is very small. The organization and the region have been on hiatus. I have to make all new connections and all new contacts. There hasn’t been a regional conference in over 10 years!
"When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze." Isaiah 43:2 NIV
As I’ve said before, I never got to finish college. If, through the glory of God, I get to put together this conference, this will be my graduation. This is the hardest thing I have ever attempted. Zoom and Google Workspace will be tremendous resources. Something that was not discovered years ago. I need to give a huge thank you to the New Jersey Council on Developmental Disabilities for sponsoring me on this journey. By the time this is published, everything should be made official. Someone smarter than me once said, “Life begins outside your comfort zone.” This may not be professional for a blogger, but I’m asking that if you took the time to read this, please pray for me. Not for success. That’s all for God. I’m just looking for wisdom and strength. Never give up, because God won’t give up on you!
Special Announcement
I will be taking a small break for the rest of the summer to finish the first draft of my book. Confessions of a Wise Fool. The first draft is always the hardest and I want to get finished before I start working with SABE. I will be back with more blogs after Labor Day. I promise I will still be doing podcasts, so stay tuned to the website! Enjoy the summer.
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
The Advocacy Life Podcast & Blog 