The following post was written by Lance, a video editor, content creator, podcast host, and all around awesome guy navigating Brooklyn, New York with Retinitis Pigmentosa. On his podcast The See-Through Podcast Lance creates a transparent environment - meaning nothing is off the table! This blog post is no different. Prompting the question, "what do we deserve as someone with a disability?", Lance explores his transformation of loss and anxiety to empowerment and guiding purpose.
Your time is valuable, so let’s get acquainted quickly. I’m Lance Johnson. I live in Brooklyn, NY. I have a degenerative eye disease called retinitis pigmentosa (or RP for short). In most cases (for those who don't know), RP causes legal blindness by the age of 40. Speaking of age, I’m 32. I pay my bills through video editing. Yep, I am a video editor losing my vision. My side hustle is podcasting. I host a podcast called The See-Through Podcast. My podcast showcases my "transparent" conversations (see what I did there?) with various people who are shaping the future of the blind + disability community. For example, in Episode 54, I interviewed the wonderful Alexa Jovanovic.
But enough about me, I want to talk about you. I’m going to start this blog with a question. As someone with a disability, what do you deserve?
It’s a simple but difficult question, right? As having a disability tends to skew our answers. It’s no wonder why either… The disabled community has to adapt to a world that’s not designed for us. We tend to avoid certain social situations for lack of accessibility or the social anxiety that comes with having to simply explain your disability. As a man, I want to guide my wife through a large crowd, not the other way around. I want to drive the rental car while on vacation. When I have kids, I want to drive my kid to school. I want to see them grow up. I want to see my wife's skin get wrinkly (though, she disagrees). I want… I want… I want…. My wants go on and on, BUT WHAT DO I DESERVE?
Does anyone deserve anything? Did we deserve to wake up today? Does the universe even know we exist? let alone care that we’re disabled? As far as I can tell, the universe sees us as one person in the 117 billion people that have existed on earth.
What point am I trying to make here? Am I saying nothing matters? Not at all. We matter. My point is that the universe isn’t out to get us, it just doesn’t care. It’s mother nature, baby.
I was born with retinitis pigmentosa. I had no say in that. It was a genetic mutation. It was built into me, in the same way code builds the software we use. I can’t change my genetics.
You can’t change Mother Nature. BUT, you can change how you react to it.
Whether you think you are god’s gift to the world or you are clinically depressed and can't get out of bed - you can’t deny that you are a statistical anomaly. A huge chain of events brought you to this point in your life. To start, you were the one in the millions of sperm that made the cut. Also - let's not forget that we're all fragile. You could have slipped on a banana peel yesterday and died. So, even at the end of a shitty day, you’re lucky to be here.
But back to my point - what do you deserve? The universe doesn’t care. so why. should you? Because you deserve to LIVE. You beat all the odds to get here. You deserve to enjoy the life that you were blessed with. While others may have it better than you, others have it worse than you. The world is brutal. But, you don’t have to be. You don’t have to be so hard on yourself. You deserve self-love. You deserve to feel a range of emotions. You deserve peace of mind. You deserve what you think you deserve. It’s a mentality.
You deserve to be proud of WHO YOU ARE - disability and all.
On my podcast, I’ve talked to a variety of guests with differing fields of vision and disabilities. Each guest I’ve brought on is unique and interesting in their own way. Each guest brings a different life experience to the table. That’s why I chose to interview them. After 71 episodes, I’ve noticed a common thread across the board. My guests have embraced who they are.They have empowered themselves through the hard work of forging through their sea of negative thoughts to find the positive ones. They know that while they will constantly have to learn to adapt to their disability, the one thing they can keep constant is their desire to live a fulfilling life. That’s powerful. That energy is contagious.
Their contagious energy is what transformed my own mindset. Before starting my podcast, the future intimidated me. I kept my invisible disability invisible. Every time the thought of me becoming blind popped into my mind, I’d let it uppercut me and I'd spiral into an anxious mess. It took me being transparent and open to start the process of healing myself at the source. I definitely still have my moments, but I now consider myself a disability advocate who is pumped more than ever to share the powerful stories of the amazing people who are a part of the disability community. I found my purpose.
So get pumped! Be contagious (in a good way)! Wear a shirt that makes people ask you a question! Start a podcast! Make a video! Write a blog! Post an unflattering selfie! Be Yourself! Exist!
Thanks for reading my blog! If you want to help support my podcast. Here’s how:
1. Follow Lance on social media - the handle is @seethroughpod
2. Subscribe to my YouTube channel, by visiting: youtube.com/c/
3. Share this blog!
To read more stories like this
check out the other entries on our blog #HowAilleSee