Living with Cerebral Palsy and Intersectionality

I'm the first one on the left (this was 20 years ago)! Not a picture of the events below, but a similar setting.   Intro I’m torn between telling the story in my heart and the story brewing in my head.  When the smoke settles, you can decide for yourself. Is this story A or story B? I can hear you talking from a distance because I’m always on alert. Put me in a full room of people talking at the same time and I hear noise. It’s not a hearing thing, it’s a sensory thing. I’ll illustrate this in an experience that goes from a meeting to a meal. Precise concentration turned upside down. Story I’m torn between telling the story in my heart and the story brewing in my head. One of the invisible challenges I live with has to do with sound intake. I don’t know if this is a physical condition or a trauma response. I’m not trying to answer that here, however, one side of it works as a skill at work and the other works as a challenge. Recently, I experienced both the strength and challe...

Intro  I was laying on the stage of the church, unable to move.  A tremendous back spasm left me temporarily immobilized.  The same stage that I:  Played Hallelujah by Leonard Cohen for a live audience for the first time.  Sang Amazing Grace, I Saw the Light, and Amazing Love all in the same set.  Did a live show of originals called Special K at the Army.  I learned how to do public speaking through preaching.  Played the bass guitar on Christmas Eve for a packed house.  Fused music, worship, dating, and drama.  I had the best time playing live music with the first person I fell in love with.  Watched my mentors teach me how I wanted to do ministry.  Learned lessons in leadership, love, resilience, and what would be the building blocks of my professional life.  On this day, I was carried out, and carried home to be on bed rest for several days after.  At that point, I didn't have back spasms that often and didn't thin...

Six figures of student loan debt.  Two degrees. Bachelor's in Biblical Studies. Master's of Information, Concentration in Library Science.  Estimated payoff date, After death.  ROI: Lifelong friendships that mean more to me than money and became a chosen family.  A lot of firsts – personal and professional.  The opportunity to leave home for the first time.  The chance to learn new skills in the student housing office.  The total exploration of my beliefs and values.  The enhancement of my critical thinking skills.  Learning the value of context.  Meeting most of the most important people in my life.  Learning from many incredible minds who I'm still linked to today.  The launching pad from poverty to something like privilege.  The gateway to my ministry career.  The rocket launcher for my library career.  The credentials that help me feed my kids.  I've looked at that debt as a burden and it's a...

“Damn the dark, damn the light,” my father was my childhood hero, when I was a teenager he said I'd hate him someday, and by the time he died that was proven right. To love and hate your own father is a trip. “Run in the shadows, damn your love, damn your lies, break the silence, damn the dark, damn the light. And if you don't love me now, you will never love me again, I can still hear you saying, we would never break the chain (never break the chain)” (Fleetwood Mac, The Chain). The chain was not only broken, it was smashed to bits. Before we get there we have to take a hero's journey of sorts, from the dad I adored to the dad I abhorred.  I went with my dad to nearly every methadone clinic visit as a child and beyond and he was there for almost all of my surgeries. I learned to play the drums on my dad's drum kit, starting at four years old. We would eventually write music together. My dad's story in short was that he was a hippie and a junkie who got ...

They say that time heals all wounds and I once sang that the memories fade. I don't believe that anymore. “I buried the feelings. The memories they come up. But now I see ‘em differently. Love is always love. That doesn't mean that it's enough” (Allie Colleen, Grass on the Grave). Sometimes you can never forget the things you want to and sometimes the wounds heal in a way that changes how you see the world. I beat to a different drum and I know that. I always have but it looks like I've changed sides when the truth is something different. Let me take you on a journey.  I'm a four year old kid whose normal is daily trips to the methadone clinic with dad, summers recovering from surgery for my Cerebral Palsy and other birth conditions, Sundays at the family Evangelical megachurch (with people who vote to defund Social Security and Medicaid benefits that I critically depended on for two decades). I'm like a lab rat in physical therapy between surgeries, a child of ...

I don't want to inspire you with my disability and success. I want you to hear me and rethink how you engage disabled people. I don't want to inspire you with the things I've survived. I want you to hear and rethink what it takes to live a normal life under abnormal circumstances. If you're inspired by me, I'm genuinely grateful and you've also missed the point. I've written over 80,000 words on disability and complex trauma in context to contextualize a conversation that needs to be had so people like me don't have to climb mountains to live an average life. My life's not fancy and most of you probably wouldn't trade your life for mine, and I'm beyond lucky to have lived an impossible and improbable life.  “If you got a dream, chase I it ‘Cause a dream won't chase you back. If you're gonna love somebody, hold him as long and as strong and as close as you can ‘Til you can't, ‘til you can't” (Kid Rock, ‘Til You Can't). For ...

“Hold the door, say please, say thank you Don't steal, don't cheat, and don't lie I know you got mountains to climb but Always stay humble and kind” (Tim McGraw, Humble and Kind).  I wouldn't be who I am without where I've been. While I've lived through some challenging things, I also picked up a lot of good along the way. I actually like holding doors for people. At the church I grew up going to, there were a couple of thousand people in attendance every Sunday morning, and I would stand at the door and hold it open for people to come and go for several moments at a time. Sure, I was raised to hold doors open for people, to show respect, and to use my manners. Also, I really enjoyed doing that. I did it almost every Sunday that we went. I wouldn't hold it for just one or two people, I would hold it for several people. Those habits aren't just there, they're built, and made.  Having left the Church all together, there are certain things that I don...

My life today doesn't fit the one I used to have. “Tell my mother, tell my father, I've done the best I can, to make them realize this is my life. I hope they understand” (Shinedown, Second Chance). I changed my narrative from I'm not supposed to work and I can't work, to climbing the org chart through hard work, advancement, promotion, recruitment, and negotiation. I didn't settle for the first stop on my current career journey. I'm grateful for every stop on the way here because each of them gave me tools I use every day. I left a lot behind to do that. I left people behind, dreams behind, comfort behind, and even the top seat. I left my home, my family, my religion, and parts of my identity to build something different. The grass is not always greener, but I had to do it for myself and for the family I built.  In early editions of this blog, I talked about religious trauma a fair amount. Recently, I was watching Prodigal Daughter with Taylor Tomlinson on Netf...

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...