By Mark E. Smith
There’s guts and there’s glory, and they don’t always go together. And, I like it that way – the authenticity of guts is where real character resides. Guts for the sake of glory is a facade, just as easy to put up as it is to take down.
When I met MMA champs Daniel Cormier and Alexander Gustafsson in the green room at Fox News I, frankly, wasn’t impressed. I mean, they were nice guys – and could literally kill me with their martial arts skills in an instant – but they looked like normal-build, relaxed dudes. Once they’re in a cage, I guess they strive to beat each other to death, but in everyday life, they struck me as average guys. We chatted a bit and they seemed pals – that is, until they got on the air to promote their upcoming fight and feigned being enemies.
Earlier that morning, I got up at 4 a.m., and slid nude from the tall hotel room bed to the floor – more of a fall, really. From there, I crawled to the roll-in shower, tensing every muscle in my body to keep my balance. That’s one of the odd aspects of my cerebral palsy – even on the floor, I can still fall, and I do.
Once in the shower, I couldn’t reach the valve, but there was a grab bar just below it, so with my right arm, I did a complete one-arm pull-up, struggling with my left hand to turn on the valve, my knees banging against the tile wall. Without coordination or the ability to accurately adjust the temperature or move clear of the shower head, it was a crap shoot whether ice cold or scalding hot water would rain down on me. But, I didn’t care. I just needed a shower, and was willing to do what it took, painless or painful. And, with the shower just being the start in my process of getting ready for the day, it would be another three hours of vying until I was in my power chair. Nothing comes easy, and some of it is downright harrowing. The only thing on my side in these times is tenacity and a bit of fearlessness. Guts, I would say.
Now, my disability experience is no different than that of many others. We quietly overcome extreme daily obstacles, often enduring pain and taking huge risks – braking a bone or busting your head open isn’t hard to do in a situation as mundane as using the commode. And, to me, that’s where guts come in. You know the risk, but move beyond it because you have no choice if you wish to be independent.
See, while I respected the dedication of the MMA fighters, they didn’t command my admiration like my peers with disabilities. The MMA fighters are in it namely for the glory, they can turn guts on and turn guts off. You can’t do that with the daily challenges of disability – you’re all in, and there’s no tapping out.
Soon, we were all on set, Daniel and Alexander being interviewed about their upcoming fight. And, as I waited off camera, my segment coming up next, I listened to them talk about how tough they are. Admittedly, the ego in me – the MMA fighter within me with guts but no glory – was hoping the anchor would ask them, “OK, I get that the fight is coming up, but tell us about your challenges in the shower this morning….”
PowerchairDiaries 
Mark, my name is Lou Ferreri. I live in St. Paul Minnesota. I came across your site while doing research for a book I’m writing. A section of the book is about my brother Jon. In the late 1950’s he was diagnosed with disabilities that led to doctors recommendations that he be placed in Willowbrook State School. I as 10 years old at the time. twenty years later, after Jon was moved to Minnesota, we became reacquainted. He was a beautiful man who I’m sure suffered greatly while at Willowbrook. He had no ability to tell anyone of his past travails but lived in great circumstances until he passed a few years ago.
The book is more about our parents than it is about Jon. I have been searching for information to confirm memories that I’m not certain of. If I remember correctly, when my parents first brought Jon to Willowbrook they had to sign an agreement. In the agreement was a stipulation that they not visit Jon for a number of weeks, or was it months? They were told it was part of Jon’s “necessary adjustment.” I have been searching for information regarding the “rules” for families. I believe families were victimizes by phycho-theories regarding what was best. In our case we were told, “It would be best for the boys.” Soon after, Jon was left at Willowbrook where he spent the next 20 years. for Jon to be removed from the household. This must have been hell for my parents.
My question is: Are you aware of any resources describing rules for parents? I know Willowbrook had them. But I can’t find anything.
I also thank you for the significant writing you bring to your blog. Best, Lou
email: louzoo@visi.com.