PART 2 - Disabled vs. Disability vs. Differently Abled vs. Add Your Name Here.

Part 2 of THIS post.

In the late 1970s and early 1980s, there was a television show called Fantasy Island. The premise was you could wish to be something / somewhere, and you would get it for a time. Of course, people got into a lot of trouble when they were looking for their dreams in all the wrong places. Because of that, they would need Mr. Rourke (left) and Tattoo (right) to bail them out. In the end, they learned something today and they were rescued from doom.

In 2018, I think a lot of people with disabilities would like to give people who aren't living with disability the option to walk a mile in their shoes so they would feel more empathetic for their plight. Nobody is so mean as to wish something like Parkinson's on someone else (at least I hope not), but it would definitely be interesting to see how so many trolls, haters, and insensitive types / people who just don't get it would cope with living a QUOTE UNQUOTE NORMAL LIFE and then one day get diagnosed with a PROGRESSIVELY-DEGENERATIVE, INCURABLE NEUROLOGICAL DISORDER.

Here, they could deal with the Avalanche Day diagnosis, deal with invisible symptoms people can't see, wrestle with medicinal side effects that kick like a bull with a bad attitude, and learn how it affects family, all while trying to retain dignity of self and ability as they fight with mental health issues caused by physical issues.

At the end, they would wake up from the dream and be OK, but like Scrooge, they would learn a lesson. They would save themselves and find out none of it was real. It was just a bad dream, much like the sleep anxiety many Parkies deal with. They simply wouldn't say or do mean things to hurt other people who live lives they don't get.

Isn't community and tolerance the point of life as a people (unless you're completely self-sufficient in Alaska)?

At one in-service I went to in my early days of teaching, we played a game where we had to navigate a maze while looking in a mirror. I used that with my own students. They saw the challenge as frustrating, but enjoyable. In the real world, sometimes that's all it takes... that is, unless trolls just want the right to hate on people.

Who plays games? Who has fun?

With the concept of teaching haters what's up, I'm not asking that it be like the South Park episode where Cartman is taught a lesson about picking on kids with red hair, but yeah... a start would be nice (besides, Cartman is incapable of being taught a lesson).

For some people, this would work. For other people, it would create paranoia that someone like Jane Elliot would dare make kids (or adults) walk a mile in someone else's shoes to understand the discrimination at the heart of Martin Luther King Jr's assassination in 1968 (especially when she won't go away and then "right-minded" people have to vilify her year after year to make her go away). Of course, Elliot worked her stuff in the moment of this horrific killing, teaching young rural white children while doing her exercise without prior parental knowledge of the planned lesson, at least the first time. That said, she showed how the subjects were quickly caught up in discrimination that they didn't know they could feel. When it comes to being caught up in the tide of sanctioned dislike, how different is this from Stanford Prison or Milgram's "electricity" experiment?

In a world where adults didn't grow out of their lost ways, they seem to be given a pass on acting horrible to others. Welcome to the year without a happy song of the summer.

Dude, what's up with that?

Back to the main point: happiness / fun / purring like a kitten. It's good for all of us.

As for Elliot, eventually, her story ended up on Johnnie Carson.

Hundreds of viewers wrote letters saying Elliott’s work appalled them. “How dare you try this cruel experiment out on white children,” one said. “Black children grow up accustomed to such behavior, but white children, there’s no way they could possibly understand it. It’s cruel to white children and will cause them great psychological damage.”

Elliott replied, “Why are we so worried about the fragile egos of white children who experience a couple of hours of made-up racism one day when blacks experience real racism every day of their lives?”

The biggest talk show in the land made the exercise national. People saw the power of empathy and understanding. Other people chose to see it as white guilt corrupting their kids.

Unfortunately, we still live in this world today. Why force anyone to think about how it feels to be anything other than what they are unless it's a quick path to Lifestyles of the Rich and Famous? It's all just liberal, snowflake claptrap designed to make our country not great.

When I taught, I would discuss People First Language and bias speech since these are important things for college and the real world. In the real world, you know, you can't be Alex Jones.

We would look at words like the name of Washington's football team and examine how "redskin" has a different meaning than skin color... i.e. scalped heads. We would look at how "hysteria" was a female slander since it came from "wandering uterus." By this antiquated outlook, most women's problems could be blamed on it (in another way Andrew Dice Clay could be blamed for many problems in males back in my formative years). I'm not sure what Def Leppard was thinking when they named an album this, but yeah... maybe I do.

When I wrote the first part of this essay on August 28, I wanted to reflect how on September 26, 2017, I had no diagnosis. Then, on September 27, 2017, I had 90% odds of a diagnosis. The next day, on September 28, 2017, I had made up my mind to accept my diagnosis, if that be what came. What other choice did I have? Finally, on November 1, 2017, I had an all-but official diagnosis. Of course, the official diagnosis comes with the autopsy. Right now, I need my brain.

My essay then dealt with how I try to remain as much of the old me as I can. Additionally, I celebrated other people who live life full on in spite of their life not being what they might want it to be. The point was how to look at people who have a disability. Does their physical / mental success somehow keep them from being seen as "disabled?" The point wasn't to say that they aren't since disability effects and conditions come in all shapes and sizes, but rather to address a conversation that I had with my wife regarding my hiking in rocky areas as something that might make some people believe I'm not really affected by Parkinson's (when I am actually affected in many ways).

In a world with so many able-bodied handicapped parking spot police, it was a serious question.

I'm still not sure of the answer.

Dealing with disability is like dealing with death. It's a 5 stage process. Denial, Anger, Bargaining, Depression, and Acceptance are the levels. When we get diagnosed, the process begins. As we get worse, it continues.

I've never denied or pretended I didn't have Parkinson's. What's the point? I've never bargained for more time. Besides, God doesn't answer those questions (see HERE for a great way to look at the bad things that happen to good people). Sure, I've been mad, sad, and "just OK." Most days, I'm Dan unless a symptom affects me or someone I love. Then, I have to find solid ground and / or offer comfort to those who notice the difference.

That sucks.

For the most part, I choose to be me. I'm not letting Parkinson's take that away. It's got enough things from me and those closest to me already.

In the first part of this story, yesterday, I talked about the first and only time I had a handicapped placard. I was at Yosemite, and I felt like people were looking at me as not being "disabled" enough to use the spot (in their eyes). In the original article, I reflected how it affected me seeing myself as a person first. I never used it again since I felt very uncomfortable using it - especially with a relatively active lifestyle in spite of Parkinson's (though I have some mild dystonia issues in my left foot that make walking without a boot uncomfortable - it actually hurts more to walk across a parking lot in work shoes than across rocks in boots).

IMPORTANT NOTE: I'm not here to tell you how to feel, but rather, I'm here to share my story. My goal is to inspire others. If I can do that for them, then they can inspire others. I have the audacity to believe we should ALL be applauded for ALL of our victories, no matter how big, small, or fleeting. We need to see the good in life, not just embrace the problems of the world (though we need to create positive change where possible). We need to help our fellow community members to not get lost in the swamp of their conditions.

Yesterday, someone out there on the Internet in a hiking group, in reading my title and not the article, informed me that I needed to "leave the English language alone" since I am "disabled." Apparently, with 4 answers on a multiple choice test, he knew the right one, and that was that.

Somehow, I was glad that he wasn't making the choices for me.

That said, in looking at the other choices, he must not have realized that "differently abled" isn't politically correct speech (though there are a lot of back and forths on other "PC" terms in between society's communities that exist with people with and without disabilities). Well, some people who created "differently abled" may want it to be PC, and some people who hate it may want it to be all they hate about PC, but the reality is that some disabilities / injuries can produce different abilities. Really. For instance, the savant condition in Rainman is not fiction. Also, neurodiversity, in some conditions, is more than just "I'm OK with my condition. I think I'll keep it." Some conditions create abilities that wouldn't exist otherwise. Other conditions take them away. Some people have benefited from their conditions. See this LINK for examples.

For me, I learned a lot of things about how to be a better me because I was forced to confront what Parkinson's meant to the rest of my life and my family's life. I wouldn't change that at all. However, I'll give the permanent part of the condition back right now if you want it!

That said, I'm not perfect at this game. For instance, it's not always easy to be able to do something and not know why other people can't do it as well. For example, some people have trouble with "your" and "you're." Some people don't care if they get the difference right, but some people can't get it or numbers no matter how hard they try. Here, I, myself, am working on not editing people's stuff when I read it in passing. Better to see people for the positive than to dwell on the negative.

Beside, I'm not getting paid to edit Facebook posts.

The point here is that tone is everything.

Being CORRECTLY and KINDLY told that handicapped spots are a privilege for those who can't walk far is fine. I have no issue with this sentiment, and it's why I don't have a license plate, nor am I looking to get one. When the time comes, I will. I'll make peace with no car keys, too. Life is too short to dwell on what was. I'd rather focus on what is. Besides, when the time comes, it's about utilitarian safety - not Dan's benefits.

Besides, at this point in my game, my life is only being SLOWED down... not HALTED or INHIBITED. I get that, and I respect that advice.

Positive advice makes a difference. It may not be what we want to hear, but it's what we need to know.

Here, I also refuse to Harrison Bergeron myself. You shouldn't either. Live life on your terms, no matter what you've been handed. Never make yourself less to make someone else feel comfortable. A lot of people choose to dwell in the dark worlds of being wired for pessimism. The key is to find our own meaning and optimism.

However, getting schooled with lots of F bombs and phrasing to tell me how to make my situation great again isn't going anywhere... unless this angry person wants to contact the disability office and speed up every single disability claim out there since he's obviously an expert in the matter with his one-size fits all definition of having any old disability equals permanently and completely disabled.

By the way, getting disability payments isn't an easy procedure or a short procedure (almost 2 years on average - though vets move quicker).

But alas, we live in a world that features a loud group of people that wants to protect the English language and society with quick easy definitions to make people like them comfortable. Why should people with these conditions have a say in the matter as to how they want to be identified (provided they don't create secret codes in their own "officially-endorsed" language to return the hate with hate)?

Never mind that I and many others are able to do many things (though not all of the things we once did, let alone do as well)... hence our coping skill, which is "Think Able" and living life as well as we can despite having a condition (I have Parkinson's, but it doesn't have me).

Never mind that it's scary to lose our identity and independence when the poop of a diagnosis hits the fan and conditions and adversity befalls us... especially big, frightening get worse conditions that present even bigger challenges.

Never mind that just not caring what others think while we accept our place on the Group W Bench (which must be where the "disabled" people go in the minds of those PC hating populist types who seem to dream of better days when they could use hateful slurs and support lost causes almost 50 years after they were officially dealt with, while sneering through self-promoting tales of racial violence) is easy to say when you've never experienced the feelings of these conditions.

Never mind that asking to be respected or listened to isn't a big thing, especially when we want to be part of things - versus how some people truly think that those of us with disabilities are just conspiring to raise their taxes to live on disability payments while making their life un-"great."

That said, the point of all of this is that adjusting to disability isn't easy. Being active with disability isn't easy. However, tolerating one another and walking a mile in someone else's shoes is. You simply have to be open-minded enough to try.

It doesn't matter what disability we have or how far we're into the process, we and all those who live in this world are on the same team. Let's be excellent to one another.

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.

ALL OF OUR YOSEMITE PICTURES ARE HERE

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

WHAT AM I IN THE EYES OF MEDICAL SCIENCE, THE LAW, AND MY OWN ABILITIES? WHAT AM I IN THE EYES OF MY NEIGHBORS AND FELLOW PEOPLE? WHAT AM I IN THE EYES OF ME?

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.