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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
Thank you for your response. ✨
My mother used to read a book to me as a child called Alexander and the Terrible, Horrible, No Good, Very Bad Day. I usually keep my posts uplifting and/or educational. I have one rule never publish anything I write when I am upset or feeling anxious. Today I’m choosing to break that rule to hopefully help someone else. I’m not thinking of anyone in particular. I know in my spirit someone else needs these words. Today I went to talk about two subjects that the mere mention of them makes my skin crawl.” Inspiration Porn” and Valentine’s Day. Let me explain, according to Urban Dictionary inspiration Porn is defined as:
“A portrayal of people with disabilities as one-dimensional things that only exist to warm the hearts and open the minds of able-bodied people.”
An example of this is when we see a video on social media of a handsome young man who took a girl with Down syndrome to the prom to make her and everyone else feel good. There is more to a person than just their disability. We are all taught to look past a person’s physical skin color. disability has no skin color. Yet, when you see someone like me rolling up to you the disability is all you see. I was that kid who was taken on a mercy date to prom. That’s a larger story that I will save for another day.
Today I am “inspirational” because I self-published a book on Amazon and I have a slowly growing podcast. Most folks purchase my book without finishing it. Spoiler alert! There is a whole chapter against “ inspiration porn”. I feel like I should issue a massive refund. in February I began offering bonus episodes for paid subscribers to the podcast. I currently have one subscriber. He is my friend. I should give him his money back. The truth is if I offered the kind of subscriptions with nude photos I might make some money. I don’t want any money! I can’t lie It hurts to produce all this content and people miss the message.
This brings me to my second point I cannot stand Valentine’s Day! I am well aware it is the stupidest holiday America invented I’m writing this the day before Valentine’s Day. at 35 from this world’s point of view, I am a failure. I have no official job. I cannot live on my own. I am not the typical man a girl pictures when they go on a date. I’m not giving up on finding someone, However, Valentine’s Day is my terrible, horrible, no good, very bad day. Not because I feel bad for myself but because for a lot of people, those misconceptions are true. People with disabilities are isolated. They are abused mentally, physically, and sexually, daily. most by the very people who are supposed to protect them. forced into financial slavery while people waste money on things they don’t need.
So why do I choose not to give up? for me, because my hero and big brother Jesus did not give up on me. He suffered so others wouldn’t have to. I am not self-righteous. I have countless sins. I am not a pastor, a priest, or a rabbi. I am saved by grace through the blood of Jesus Christ. I believe that I and those like me other “lucky ones” choose not to sleepwalk through life.
“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.”
Romans 15:13 NIV
The other day I had a dream. I was dreaming of walking on a beach with Jesus holding my hand. it lasted less than 2 seconds because I was woken up by the garbage truck coming down my street. I know this is a lot to think about and this is probably part of a larger conversation. Some of you might think I’m crazy.
Here’s what I know, this world is unfair, unkind, and ungrateful. I know I may have a lot of more unpleasant days in front of me and people will not understand a lot of what I go through no matter how many ways I describe it. That’s okay because I don’t do it for them, I do it for him. it may not be fun at the moment but 100 lonely Valentine’s Day’s is worth the rest of the eternity. Do you think Jesus enjoyed the events leading up to and then going up on the cross?
Thank you for your response. ✨
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