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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. ✨
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.
Thank you for your response. ✨
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