Living with Cerebral Palsy and Intersectionality

“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...