Think / Able - and Check out My Parkinson's Facebook Page

Think / Able - and Check out My Parkinson's Facebook Page
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Tuesday, August 28, 2018

PART 1: Disabled vs. Disability vs. Differently Abled vs. (add your name here)

Part 2 of this is HERE.

Earlier this year, my wife and I went to Yosemite. Since I have a National Parks Pass for people with disabilities (THEY'RE FREE IF YOU KNOW ANYONE WITH A PERMANENT DISABILITY - NOT JUST A BROKEN LEG FOR THE TIME BEING), they gave me a tag for my car. This was so we could park in the designated handicap spots.

In my article for Health Union (see here for many other conditions and stories of those who live through them - they're much more than just Parkinson's), I wrote:
Sure, I hike with a limp, but I can walk. Now, I had access to special parking spots. Does this mean I’m at a new level? Does Parkinson’s have me (like the pod people in Invasion of the Body Snatchers)? As a person who found his health condition at the mid-life mark, I now face this confrontation.
Let’s just say the access pass wasn’t the bonanza of front row parking that some people might think it is. Instead, I had a mental hurdle to cross. The placard might as well have said, “You’re less Dan now. Ready for the confidence shake?”
As my wife and I walked through the lot, I wondered if people were looking for a visual disability. After all, most of mine are invisible, save the tremors and the rigidity. I thought about how people judge active people with disabilities they can’t see.

NOTE - I used the permit once, and never used it again. As stated by a commenter, it's something to forgo since I could walk, AND it's something I don't need, which is why my car doesn't have a disability plate.
You can read the WHOLE ARTICLE if you choose, but the point is
The CDC defines disability HERE.
These include conditions related to impairment, activity limitation, and participation restriction.
That seems pretty straight forward, but what if you can't see my disability and I'm active or at least taking pictures of me on the day when I told my nap I wasn't going to take it? Granted, I have a tire around the middle, but what if you think that because I hike in rocky places (when you wouldn't), I don't have disability "issues" and "concerns?"

What if you think I am just peachy because I can still do that when I'm no longer wanting to do solo 30 foot rock climbs like this  (at Hawk Mountain) or waterfall climbs up the falls like this (at Sullivan Run) and this, its frozen cousin at Ricketts Glen (and that isn't a fun thought, by the way).

All you know about my internal body heat getting out of control is that I must be the smelly kid if I look like this after 20ish miles on the Standing Stone Trail in 2013. You don't realize that I am on my way to looking like that in short order on a walk that's about 4 blocks long in my neighborhood yesterday (seeing as it was 90°+).
You see me as able to walk, type, talk, see, laugh, and play. You don't always catch my robotic voice, my non-smile, my inability to hear soft, high-pitched voices, my lack of smell, or my unblinking eyes and associate them with other things SLOWING down, too (although they do).
So let me ask you this, as I did my wife the other day when we were talking about the long disability process (partial / full / future / changes / etc.) and how I discuss being relatively "active" when I speak to people concerning it. 
Here I should emphatically state the boulder climb was last year, the frozen waterfall was 2015, and the running water climb was 2014. Also, keep in mind, my diagnosis was September 27, 2016. I still go out to places like the Throne Room (hiking through rock fields to stunning vistas) because I want to enjoy life. Why shouldn't I? Would it make people happier to know that by being diagnosed with Parkinson's that I am truly unable to do things. I mean, I could never dunk a basketball, let along fake out Lebron to dunk on him, but why can't there still be things I can do when there are other things I can't do / never will be able to do?
Thus, here is question # 1. What if Jimmy Choi is an American Ninja Warrior supreme? Does that mean that he's not someone with a disability?
There's a lot of famous people with Parkinson's
There's a lot of famous people with disabilities.
They do what it is they do and want to do and need to do. Does that mean that their conditions don't create other new normals for them?
There are a lot of athletes with disabilities. These include Jim Abbott, who has 1 arm and an MLB level no hitter to his name. His story was featured on Comedy Central's Drunk History.
Seeing as I'm a baseball guy, I'm a little more familiar with people like this (Lou Gehrig, MLB Hall of Famer, you rocked! See my story on his first season playing with ALS (which is the best baseball season ever!!!).

So yeah, here's Pete Gray who was the last pro hitter with one arm.
Here's a great story about one-armed baseball players including a lot of kids who do despite what other kids and adults make them feel that they can't do.
Adam Bender is a tough as nails kid. Despite having one leg, his life has been about giving it his all. Even when he was profiled during his elementary school days, he was still Navy SEAL tough.
Here's another list of people with disabilities who were / are successful in spite of them.

Nevertheless, in a world where the wheelchair is the symbol that many people think of regarding disabilities, what about invisible disabilities? For me, this is everything that bradykinesia does to slow people, like me, with Parkinson's down. This is also exhaustion, mental overload, medication side effects, and cognitive issues. For a friend of mine with ulcerative colitis, this is the need to always be around a bathroom and lots of exhaustion. For many of us with disabilities, apathy and depression are the permanent unwanted guest. For as good as we might look, we have our issues.

Just because you see us having a good time doesn't mean we're any less "diagnosed."

Additionally, my boots keep my claw toes in check, but without them, it hurts to walk distances. This is why I don't wear sneakers. Nevertheless, with boots AND poles, I can balance on rocks. Yes, I'm actually more comfortable walking a rock field in boots than from my car to my job.

But even when we're still ourselves (in my case Dan), we're still battling our conditions to stay us. 

"Sometimes you win. Sometimes you lose. Sometimes it rains (Bull Durham)." 

The point is that there are outliers who run marathons and kick butt. Sure, we can be the outliers. Most likely, we will do our thing and just be. However, we'll always have the monkey on our back to fight with. On those days, we'll get our GRRR on.

Whether you see it or not. 

So in the end, I'm Dan, but I'm Dan with an evil sidekick who constantly taunts me.

For that, I have a condition that always affects me. It may not be the condition someone else thinks of being "truly" disabled. It may have come on later than another condition. Nevertheless, it's something that affects me now, and it will affect me more later.

Whether other people understand that or not, it's true. That said, whether I think I always can let me be a person first, I need to keep being Dan, regardless.

Letting Parkinson's have me is letting me turn into a pod person, and that's not happening... no matter what symptom I'm stuck with.

In a world filled with so many wonderful things to see and do (this is the Faroe Islands), anything less would be anathema, especially when I control the equation.

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