In the May episode of The Purposely Broken World, Kevin breaks down the disability hierarchy portrayed in modern cinema. Hollywood only uses disabilities that are easily manageable or easily hidden. Too often, people with disabilities are typecast as the inspiration or the villain. Hopefully, this episode will start a conversation that will lead to change. 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
Salutations to my dear friends. I hope you guys are all enjoying the early days of spring. Every once in a while, we all need a pick-me-up. I decided to write one for my fellow individuals who may be having a hard time right now. Please read or share this with any individuals with a disability of any kind who are going through a difficult time. I, the writer, have a disability, so I hope my words can provide additional comfort. What I’m going to do to make this writing a little more digestible, is list ten brief statements for you to ponder over. Please note the order does not indicate importance; it’s just the way it came out of me.
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalms 139:14 NIV
Just because there is something medically wrong with you does not mean there’s anything wrong with you. Scientifically one in four people are diagnosed with some form of developmental disability. It is universally understood that no human is perfect, therefore there has to be something wrong with everyone.
Don’t let your bad days distract you from remembering the good days.
You are under no obligation to accept someone’s evaluation of you.
Everyone always fights for what they want, don’t let them make you feel less than for doing the same.
Your disability cannot stop you from having a life, only you can do that. Learn the difference between existing in living.
if you want people to see you as a person, you must do it before the public does.
Your disability does not give you an excuse to treat others any less than you want to be treated.
Learn to rest and exercise both your mind and your body.
We are never abandoned without a gift. Once you learn what yours is, do not be afraid to use it.
Find a small circle of friends, not a large number of acquaintances.
I pray this small blog finds someone who needs uplifting and encouragement. Remember, you are not given anything you cannot handle. Thank you for reading, and I hope to see you soon.
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
Do people ever do little things or say little things that bother you? A pet peeve is defined as just that: ” Something that a particular person finds especially annoying.” I decided to do something a little bit different with this blog post. I want to tell you about one of my “pet peeves” to hopefully create a discussion about how people interact with each other. It bothers me when people say, “I hate people.” I can’t believe people hate every single person in the world that exists on the planet today. So, what exactly do people hate?
Jesus replied, “ ‘Love the Lord your God with all your heart and with all your soul and with all your mind.’ And the second is like it: ‘Love your neighbor as yourself.’ All the Law and the Prophets hang on these two commandments.” Matthew 22:37, 39-40 NIV
We live in an on-demand society. We have the world at our fingertips, with unlimited amounts of information. You can have your groceries delivered to you within two hours. You can watch any show you want anytime you want. The fact is, people, do not work the same way. It takes time to get to know a person. With the invention of social media, we lead ourselves to believe that we do know someone. Then we are disheartened when it turns out that they were not who they said they were. We no longer use social skills to introduce ourselves, now we use keystrokes. Have you ever been to a party and seen all the kids in a corner together? They communicate with each other without ever saying a word to each other. I find this to be very sad.
We no longer have patience because everything comes to us right away. People may be rude and inconsiderate, but we no longer try to understand one another. If you think I’m wrong, answer this question Do you know your neighbor? Your best friends used to be your neighbors. I know these are just a few reasons why we all have lost the ability to consistently and effectively create a positive relationship. After reading this, I challenge you to speak to three new people in your world today. Take care, and I will see you next Wednesday as usual.
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
Hello, my good friends, I hope your day is going well. The idea for this blog took me a bit to develop. Frankly, I wasn’t sure if I could even write about this topic. Then I figured it couldn’t do any harm, so here we go. What do you need to be a talented writer? Before I begin, I must issue a small disclaimer. I do not have a degree in journalism, creative writing, or anything like that. I’ve said this many times. The only accreditation I’ve ever had is a basic high school diploma. So remember, while these suggestions are coming with the best of intentions, take them with a grain of salt.
There are different kinds of gifts, but the same Spirit distributes them. There are different kinds of service, but the same Lord. 1 Corinthians 12:4-5 NIV
If you love writing, then you are a writer! If you write every day, then you are a writer! Don’t let anyone tell you differently.
Unlike a movie that a thousand people can see at a time, only one person can read your words at a time. So write to just that person.
Writing is a challenge. The page always starts blank. If it was not a God-given talent, everyone could do it.
It doesn’t matter if you’re writing about pink elephants or the cheesiest erotica novel, if you spend your time and energy on it, be proud of it.
When you’re writing you are sharing a piece of yourself with the world, if you don’t love what you wrote then don’t publish it.
Always have a TEAM of editors you trust. If you don’t like objective criticism, then don’t share your work with them.
This is not the 1800s reading is no longer the accepted medium to share information. do not be offended when people don’t read your work. Put bluntly, “Writing is not sexy.”
Writing is about making a connection, and it does not mean you can connect with every person in the world. With enough connections, you make an impact to change.
Despite what any English teacher would have you believe, there are no rules. So write what you know and write what you believe.
If you’re not having fun, then you’re doing it wrong.
I know these suggestions might not make you the next Hemingway or F Scott Fitzgerald, but I hope they make you think about the gift you have and how to use it. It took me a long time to focus and harness my writing style. This is a tiny blog with a tiny following. Share this with anyone who you think might gain something from it. Have fun, and above all NEVER STOP WRITING!
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
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 April episode of the Purposely Broken World, Kevin uses the films Me Before You and The Fundamentals of Caring as the backdrop to a conversation about the value of life. Regardless of circumstance, every life is precious. Is the media subtly telling us that if someone has a significant physical or behavioral disability, they should die? How many people have all their faculties but waste their lives? Ponder these questions and more in this very thought-provoking episode. Parental advisory is not for language or sexuality but for sensitive topics. 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
In the second episode of her podcast Ms, Betsy Lee takes us through the hardships of watching her daughter undergo multiple surgeries. faith was the only thing that could and would get her through it. Her emotions can be felt in every syllable of her voice. You can find joy in the hard seasons of life. This is a real testimony.
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
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
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?
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
Note: The following book post is an excerpt from my book Confessions From Disability Limbo only on Amazon and Audible. it is a very crude example of disability life.
Ladies and gentlemen, I have a problem. I know someone will find it controversial. I am fearfully waiting for an email from some legislative officer in the governor’s office, removing me from all the committees I serve on. Besides, I know my mother, little sister, cousins, and 80-year-old grandmother are all going to make a line to beat me after reading this. I beg the Indulgence of all of you. This is advocacy in its purest form. Are you comfortable naked?
That is why a man leaves his father and mother and is united to his wife, and they become one flesh.
Genesis 2:24 NIV
Two years ago, I was on a respite with my twin brother. They undressed me on the bed. When my brother said that, he had to use the bathroom most urgently. Our staff quickly went to go handle his needs, and they left me like Adam in Paradise before he discovered fig leaves! I rolled over and grabbed my phone and began listening to music. A few minutes later my staff finds me in my little world drumming along to the epic drum solo in the song I Can Feel It calling in the air tonight by Phil Collins.
I have often said that I’m uncomfortable with my body, but I have become comfortable being naked around strangers. I am a 35-year-old male wing roughly 135 lbs. Exactly 5 feet tall with hair everywhere on my body except my head, with a collection of scars from past surgeries. I will not be on the cover of GQ magazine soon. The staff that saw me in this vulnerable status had met me less than 24 hours earlier.
There is this trend on the platform Tik Tok where people walk in front of their significant others in the nude facing the camera outward to capture the reaction. Every time I saw one of these videos I had the same thought “this does not represent my life and those in the disability community.” Imagine having a conversation about sports or if they liked the Chinese food last night as you go over the proper procedure for them to clean your backside. Some people might find this awkward or even laughable I am still one of the lucky ones because being naked often leads to torture for some individuals. For many years, receiving a cold shower was a form of behavioral control for those who lived in institutions. Individuals or the very staff that were supposed to protect them violated some daily. This still happens today. How would you communicate that the water was too hot if you couldn’t speak? This also happens every day.
I have a challenge for every person who reads this post. Tell or ask someone you love something personal about you when you are nude. Then make yourself have a conversation This simple exercise would hopefully give you a glimpse of what it is like to feel like those of us with disabilities. Even when you are getting a break because most of the time, the people that see us in this vulnerable state we don’t love.
Here are the rules:
You can’t do it after sex when everything is perfect.
You can’t do it to get their attention, you know this is not about sex.
You can’t cheat and say, ” is this a mole on my back?” It’s got to be something real.
The most important conversations I have ever had have been in this moment.
All I ever wanted to do is share my experiences with the rest of the world to show that people with disabilities are people first. Something that society forgets about from time to time: thank you to anyone brave enough to try this. Have a great day, friends.
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
Gender, sexual orientation, and ethnicity are all labels society tries to put on us. In this episode, I’m trying to help us see the whole person. The human experience cannot be confined to one category. Please join me for a thoughtful conversation All opinions are my own. My work for this episode is based on the blog below. Please subscribe for bonus content.
The Advocacy Life Podcast & Blog 