Living with Cerebral Palsy and Intersectionality

Having a disability is expensive. Last year, I spent over $9,000 in out of pocket medical costs after insurance premiums. I'm relatively healthy and most of that cost is the maintenance required to keep me healthy. This year, I'm on target to spend a minimum of $6,000 on alternative transportation because I don't drive due to my lack of depth perception. That's $15,000 a year on health and transportation on the low end. That's before food, utilities, student loans for two degrees, or any other bills are considered. I've made career moves to stay on top of all of that because it's in the best interest of my family's stability (short-term and long-term). The last six years have been the most prosperous in my career and the most expensive (I know I'm not alone in feeling the impact of economic conditions).  I started taking the bus a lot more over the past year to attempt to reduce the alternative transportation costs. Taking the bus to and from work is...

“In 2025, 22.8 percent of people with a disability were employed” (U.S. Bureau of Labor Statistics). To put that another way, almost 77% of disabled people are not working.  I was at a professional conference recently and a presenter noted the percentages of disabled workers and disabled adults with a Bachelor's Degree or higher. When I was growing up, there wasn't any expectation that I was going to join the workforce because of my disability. When I was in high school, my peers questioned that a lot because they could see what I was capable of every day and they also acted as if I wasn't disabled. Years later, I went to college on my own volition and knew I'd have to join the workforce to pay for my Bachelor's Degree. There was a deeply ingrained narrative in my head about my abilities and about working. I knew I was going against the odds and the narrative. When I heard how much the stats supported those odds, it gave me pause. I got curious and looke...

“Think about what you keep to yourself at work. You've spent your career not having that option with some of my identities, and choosing concealment with others. Who are you and what are you carrying?”  I was a 10-year youth ministry professional. I have surpassed 10 years as a library professional. I've done just about everything in my field, from the front desk to the director's chair. I've been promoted, have been recruited, I've been let go from ministry, and rebuilt with astounding fashion in libraries. Also, I am the product of familial dysfunction, the son of an alcoholic and a drug addict, and I live with a disability every day. All of that comes to work with me whether I want it to or not. There's no off switch for disability or complex trauma. It's there usually in the background, fighting for the foreground, and I have to find the balance every minute of the day. I went into youth ministry, silently because I could physically do the jo...

I'm fried at all the edges this week. I almost didn't write this post. This happens way more than I get into most of the time. I'm constantly burning the candle at every space possible because I don't feel like I have a choice to do anything less than that. I'm exhausted, completely depleted, dealing with work emergencies, and rolling into a disability in context presentation on Monday on fumes. This is me. I will go as much as I can until I can't because I feel like there's no other way to live. I'm told I should rest and take care of myself and the output rarely slows down. For me, it's not a lack of choosing to rest, it's a lack of people understanding how much rest I actually need. Even the people closest to me really don't get it (whether they try or not is irrelevant). I'm about to talk about disability in the context of leadership on Monday. If leaders “eat last,” I was born to lead.  In leadership, you do everything to...

Previously on Cerebral Palsy and Intersectionality you read about some longstanding rules that I still keep today. I covered no phone calls after 9 pm, not refusing food, not telling people what goes on at home, and not leaving things on the floor. Here you'll read about some other rules I still keep today: no uninvited guests, don't talk about that, don't cuss in the wrong context, and don't do things without permission.  “Rules and regulations to command and obey” (Fuzzbox, “Rules and Regulations”). No uninvited guests is a lifelong rule that I still keep. Growing up, my dad was a recovering junkie on methadone. Not only was I not supposed to talk about that openly (as I addressed in part one), I was highly discouraged from having friends over without my dad's prior knowledge and approval. This might make sense as a little kid, but that remained true until I moved out in my twenties.  My dad was incredibly paranoid about the methadone, that he had a co...

“What's a rule from childhood you still follow and why?” There's probably too many to count for better or worse. No phone calls after 9 pm. Don't refuse food. Thank people and use your manners. Hold doors open for others. Rinse and reuse. Finish what you start. Don't open the door for strangers. No uninvited guests. Don't tell your friends what's going on at home. Don't cuss in the wrong context. Always lock the door. Don't do things without permission. Don't talk about that. Don't put things on the floor. Always figure out a way to eat, even if you can't afford it. Try something before you decide you don't like it. Wait until others are served before eating. I think that illustrates that I've got a lot of embedded rules and that's not everything. I'll kick this off with no phone calls after 9 pm.  First, let's clarify that I grew up before the cellphone. I have a lot of memories of coming home and checking the...