Choose your story

There is a lot of stuff we don't have control over; who are parents are, where and when we are born and other people. I think there is a such think as free will but it can be constrained by some if not all the factors above. If I'm only taught the I'm "disabled," "poor" or "stupid" narrative, how can I change? I would have no clue that there are different ways of thinking and feeling. Think of it this way, a kid living in poverty who knows nothing else is not going to magically decide on his or her own to go to school, get a good job and live happily ever after. Somebody has to educate that young person on alternatives. They also have to be in an environment that encourages and nourishes that change. What good is there in being told there is a better life but not ever seeing / living it? I think the older we get, the harder it is to change. Habits and stories we live by become so ingrained, that change is all but impossible. Once the story is written, that's all she wrote... Bam! Done! Of course there are exceptions. So how do you want your story to go?

It starts with you, parents. Is keeping your kids on lock-down, sheltered and narrow really going to help them be fully functional, free-thinking adults? If all of their friends look and act like you, that may not be such a good thing. Diversity is the enemy of bigotry.  What good is it telling kids what they cannot do? Why constrain their vision, dreams and possibilities? Focus on what they CAN do! They need the tools to explore the world for themselves. Two of the best tools I know of are education and travel. Perhaps the next best thing is internet access.The more of the world they are exposed to, the better. Even the bad stuff is good. We all need to be aware of the reality that is war, poverty, corruption and so on and so on. How can we make the world a better place otherwise? Just being informed gives us more agency.

What I mean by "agency" is power over our own lives. This is crucial for people with disabilities. If I can work and support myself, I can decide what help I need and pay for it. This is the best thing my parents ever did for me. I was never taught to feel sorry for myself, depend on others (much less the state) or the world owes me a damn thing. Instead, I was taught to be a critical-thinking more or less functional adult. I never knew about the ADA until well into my adulthood, although I've certainly benefited from it!

The bottom line, dear reader, is don't let a so called disability write the story of your life. Sure, it may play a part but, hopefully, not the lead role.  


        

Readings 7.25.15

Why Disability and Poverty Still Go Hand in Hand 25 Years after Landmark Law

Disability Discrimination 

25 Years Ago

Institute Of Disability Culture

Young, Disabled and Stuck in a Nursing Home for the Elderly

People Do the Coolest Things

There are plenty of things to read about how people with physical disabilities are mistreated. But it is not all bad, not in my case anyway. Because of you guys, I tend to wear rose colored glasses, always seeing the best in people. 99% of people treat me with the utmost kindness, helpfulness and respect. So to you guys, think of this as a thank you note. My warm fuzzies are not limited to one group, country or culture. Almost everywhere I've been I've experienced nothing but human kindness. Now, I've been some places; England, Scotland, Mexico, Bulgaria, Vietnam and all over the USA. I know I cannot say my experience is the only thing going but I still think it is worth sharing. People need positive reminders. Let me share a few highlights. This is personal stuff, man and I don't share it lightly.

Bulgaria- Three strangers met me at the airport (okay, I met one on line) and took care of me for a week as if I was a family member. I never had to worry about a thing. They shared their culture and country with me. It was amazing! Some people thought I was nuts for going. I guess I was a little nuts. I hope I still am. Whenever I'm overseas, I want people to think well of us yanks. So I avoided being a pain in the ass. Think like Michael Jordan. He once said, "A fan may only get one chance in their life to meet me. I want that to be the best experience possible." I may be paraphrasing but stick with me. When I'm over seas, I may be the only American somebody ever sees or meets. I want to do it right. So whatever my new best friends wanted to do I was up for. We'll figure a way up the steps, over the cobblestones and if it rains, well, we'll just get wet. Just deal, yo! I let them guide me through their culture, food and down many, many unmarked roads. Yes, they knew I was a person with a physical disability in advance.  Other places I've bee the experience has been similar.

Vietnam- I read a lot of negative things about being physically disabled in East Asia so I was a little apprehensive about going there*. But this time I was meeting an old family friend, so I figured I'd be okay. I went back in 2005. The place is not what one would call "handicapped accessible." There were steps almost everywhere and the curbs resembled the Cliffs of Dover. The people there made the difference. I never had trouble getting help whenever it was needed. Quite often, I didn't even have to ask. Once at a bust market, we stopped for lunch. I ordered pork strips with rice. The young waitress cut mine up without me asking. I would have got someone at the table with me to do it. So, yeah, I was going to ask somebody. The loving-kindness I experienced there was unbelievable! I went back in 2007 and met my wife to be, Thu. But that's another story. I cannot forget you guys here at home.

USA- Too many to mention! Let me share a funny story. I was in an air port once and got singled out by the TSA for a random special screening; shoes, metal detector wand  with a date-night pat down. Once they were satisfied I had no explosives, firearms or nail clippers, I was sent back to the waiting area. I sit down with a shrug and this random stranger says to me, "Man, I'm glad they checked you! I just knew you were all Al Qaeda. Now, I can enjoy the flight!" All present had a good laugh. Keep your sense of humor, people! It will get you a long way. The TSA dudes were just doing their jobs. No hard feelings.      

You get out of life what you put into it. Sure, you can sport the "I'm disabled" label on your forehead, making demands, focusing inward on your own problems (health and otherwise) and spouting the whole life is not fair mantra. But really? Where will that get you? "You are as happy or sad as you choose to be," somebody said. (Lincoln or Lady Gaga for all I know) Let me make a small change. "You are as disabled as you choose to be." No, I had no control over being born with AMC, but I do control how I chose to deal with it.  

The Opportunity

My name is Sam Fallen and I work for God. Think of me as God’s “cleaner.” Being a demon can be fun at times. I have to say I love me some cherry pie, especially when it’s served by a hot, little blond in a short dress. She knew I was checking her out and she liked it. This is one of the side effects of being a demon; you know the whole temptation thing and all. Ah, hell, here we go.

A man a few booths away shouted at his small wife, "You are a stupid piece of shit! Can't you do anything right! I can you believe you just did that! Oh, now you are going to cry? Look everybody, she's crying!"

Now, if there's one thing I hate, it's abuser assholes.

"Please stop," she whimpered back.

"I don't believe you, just shut up and eat your fucking food."

The whole dining area was cast under an uncomfortable silence. Sir, you got my attention. That's not good for you. Normally, I'd have to wait for word from my boss, Bill Barker. Thank God (literally) I can take direct action under such circumstances. The couple in question ate in silence. Feeling the woman's hurt just burned my ass. I knew what I was going to do. It was just a matter of time. Sure enough, the cowardly loser got up to take a leak. A big dude with tattoos a few tables away also got up with the same idea as me. The loser took no notice. I put my hand up to the tattoo guy, as to say, I got this. Then, I fell in right behind the loser not making a sound as he passed my table. We demons can be sneaky bastards when we need to. I let him get a little ahead of me. Why spoil the fun, right? I followed him into the men's room and waited. Mid-leak at the urinal his ass was mine! I seized his right arm shoving it up painfully behind his back and grabbed the hair on the back of his head. He shrieked in pain as I shoved him into the large handicapped stall with piss flying everywhere (he was not done yet). Whoever had been here last had the green apple squirts and not flushed (you are all savages, you know that?). Face first into the dark brown water the loser went and there was not a damn thing he could do about it. I held him there until he got a nice mouthful of feces laden water. It was now time for the real fun to begin!

I pulled him up and threw him onto the ground ahead of me. Gone was the restaurant bathroom. He had landed on a hard-packed sandy ground under a pitch-black sky.

"What the hell? Who are you? What do you want?"

"Welcome to Hell. I got what I want now, your soul for eternity," I answered.

He started to stand and a shove from my size 19 boot put him back in his place.

"Feeding time!" I shouted.

Nine huge demons appeared around the loser feeding on his fear.

"What the fuck is this, Sam?" The harry one said scratching his balls.

"Take out," I answered.

They nudged him with their large feet and poked at him with white-hot fire tongs. They were like disappointed dogs getting a bad treat.

"Ahhh, a waste of time," another added.

One by one they disappeared.

"Well, this is awkward," I said when it was just he and I again. "But they're right."

"Who the fuck are you and where am I?"

"Hell. I already told you. Who am I? No matter. I'm not going to keep you company anymore either."

I disappeared leaving him there on the hot sand, under a black sky and the outline of rocky, snow-capped mountains far off in the distance. His hell was being powerless and alone.

I took a leak, washed my hands and left the restroom. On my table, I dropped a twenty. It was the largest tip the cutie got that night. She was a nice young woman. She deserved it. On the table where the wife sat, I dropped a hundred.

"You're free now."

The tattoo guy nodded to me as I walked out. The loser was never found. He was resting uncomfortably four dimensions away. Of course I became what your police call a “person of interest.” I don’t find your Orwell shit all that amusing. But I don't show up on security cameras and appear differently to different people. I felt a little bad for the lead detective but not that much. I don't really care for dicks. Like I said, we can be sneaky bastards.     

People say the Damndest Things

I read this article today and it got me thinking what are some of my more memorable negative experiences being a person with a disability?  

What I Learned about Ableism after my Kid's Video Went Semi-Viral 

Worth the few minute to read it. Go ahead... 

Being a person with a physical disability truly has it's moments. Let me share a few of mine with you. People say the craziest shit sometimes. The flowing are a few choice quotes from adults.

"Hey man, what happened to you?" More than once.

"What's wrong with you?" Too many times.

"Were you born like that?" Too many times.

"You got your job because of your disability." Once was enough. 

Here are a few rather interesting and educational experiences I've had along the way.

So... yeah, I got that going for me. As I get older, I find this stuff no longer really bothers me all that much. Most of the time, people just don't know any better. I just answer the question and move on to whatever the business at hand is. The one that drives me nuts is people who think physical disability means mental disability. A long time ago a neighbor used to refer to me as "the little retarded boy" and man that used to drive my Dad crazy! Its a wonder that guy did not get a black eye! Also, back in those days, (the 1970's) little old ladies would come up to me and give me money. My family was not poor and I was always in decent clothes and clean. Guess it made them feel better. Oh, and there was this old granny-type that called her grandson (I guess) over and pointed to me and said, "There's a boy with MS." Thanks for the diagnosis, grandma! You are not a doctor or a rocket scientist, are you? And one more for fun. I had a German dude get all upset when I did not park in a handicapped space. Yeah, I felt like walking. I tried to explain that I like anyone, need exercise. He basically glazed over. There was only one thing for me to do. I went in and had beer.

As Chuck The Yankee once said you can find Sympathy in the dictionary, look between shit and syphilis. I don't need it. I got a cool house, money in the bank, great wife and a family that's anything but boring. I tell you all of this so you can educate others, especially kids. I'll always get the long stares from little kids. I just think it's natural. I'm different. It is not near as big a deal as it used to be now that I understand they are just curious. I'll speak to them if I can. Just saying hello, how are you seems to bring them around. So I'm cool with kids not knowing what the deal is and how they should respond to someone like me. Adults... Less so.                 

So here are the rules.

1. Don't be an asshole.
2. Not sure what to do? See rule number one.  

Soon, I'll write about the more positive stuff I've experienced as a person with a physical disability. I can write about the positive for days.

All in on the fun!

    
     We try to make things better for the physically disabled like special parking spots, carts / scooters, by-passing lines at events and airports. But now it seems everyone wants in on the fun! Why is it simply being overweight is now a handicap? What about those who have no visible physical disability who take the last handicapped spot and bound into the store? Yeah, yeah I know not all disabilities are visible but it seems the once ample handicapped parking is all too often full. The scooters disappear at places like Costco and disability claims are skyrocketing. I think there are several reasons for what's going on.

    First, we here in the USA are simply getting fatter, sicker and generally less healthy with each passing year. A fat dude with emphysema is handicapped after all. He now needs the spot just as much as the paraplegic. Weight gain leads to multiple health problems as we all (should) know. Our diets are terrible and if anything are getting worse. Try to remember this the next time the idea of fast -food pops in your mind. It is much more costly in the long run. In addition to exponentially increased health costs there are also exponential decreases in the quality of life. Getting older is hard enough as it is but add 20, 30, 50 or a 100 pounds to the mix and watch your health completely go to shit. I'm not just being a preachy douche bag. These are the facts. For the record I consider myself overweight. Not massively but enough to think I can speak from experience. Not getting around well sucks for whatever reason. Don't make it worse.

     Our bar for what's considered "handicapped" has lowered or broadened. This is just a feeling I have. I think it would be hard to "prove" one way or another. Contrary to media hype, the economy is still tanking. So a lot of people see disability checks as a way out. Now this is something we can verify. I think this is a reasonable source with some good key points thrown in. Maybe this explains why handicapped placards seem to be given out like cotton candy at a county fair. This is not going to be an easy problem to solve. It's hard to swing back the other way and given our modern fast-food life style almost impossible.

     If people can justify being a Nazi, ISIS or KKK member then justifying stealing a handicapped spot, scooter or cutting in a line is a snap! "Oh, I only wanted to run in and out." "All the handicapped spaces are empty." "The lines are too long-I'll say I'm physically handicapped." Nobody thinks they are bad people and in their minds these excuses are totally okay. Society, generally, lets it slide. I hear ya, how does being a Nazi equate to stealing a handicapped spot? The idea is we can con ourselves into believing almost anything, making them no big deal. You need to always listen to that little voice or voices telling you right from wrong. Beware of the one that says "...its okay this time." or ...its just a little thing."   Hey, you either do wrong or you don't! Just this one little time does not make it okay. But I'm not done yet...

     A note to handicapped people. Here's a little of what I've learned so far. Take what works for you and leave the rest. Don't be an asshole. Everybody has stuff to deal with, as Christians say, crosses to bear. Ask for help rather than demand it. Use please and thank you a lot. Allow whatever your handicap is to make you a better person. I've learned patience, tenacity and easiness. I should say I'm still learning those things and more. I think the world does NOT owe me more more than I owe it. Life won't give you any more than you can handle. Remember you are not alone and you got this!  

  
   

An Important Reading

Here's an article about a local "home" for physically adults, Bell House.

I bet there are many such stories around the country and beyond.

Thanks for reading but take action also.