"You should park where you belong" says local business owner to disabled man.

I partook of time with friends at a business in Key West Plaza, West Monroe. I'm not naming that business because this event had nothing to do with where I took my business, rather where I parked. But Key West Tan gets mentioned because this occurred via the owner of that business. I don't know what this man's name was, but I'm sure others through out the business area do. Here is what happened.

The man came to find me, asking about the car I parked as seen in the image. I thought something had happened to it so I found the man asking about me, and brought his attention to myself. He confided that he wished for me to move my vehicle from the space in front of his store for the sake of his patrons.

This is where I point out that the rain poured in buckets outside. Furthermore there were and are no signs or any form of assigned parking (save for disabled) in the entire plaza shopping center. On the side of the business (Key West Tan) are four parking spaces directly attached to his business. There is no way in any portion of the parking lot that you can avoid being rained on, by parking there. I am disabled, walk with a cane (most of the time) due to complications with my disability, Multiple Sclerosis. However, my parking placard is expired. So all I could do was move the car out to the middle of the parking lot to get the most rain exposure possible. These are all important factors to this story.

Initially, though quite disturbed at the idea that this man was willing to go business to business to hunt me down for where I parked, I did move the car. But then I noticed that there was no sign indicating he could ask that of me and I changed my mind. I had quite a few things I would need help getting to my car as it were, never mind travelling a wet slick parking lot with a four pod cane. I had every bit as much right to park right where I did and he had no legal recourse to ask me to move. So I put the car right back in the same space and went back about my business trying to enjoy the day with friends.

Mr. Tan Owner came back to make a point and I didn't let him.

"Before you say a word," I said. "tow me." Yeah, it wasn't a nice thing to say, but his treatment of me was about to get worse, so I don't feel so bad about it.

The man went out to his truck, got his phone, and as far as I could tell... called the police. Since there was a possibility of police, I got out my phone, took my cane because the stress was weakening my legs by this point, and went out to take the photo you see above.

"He's parked right in front of my business..." I heard him say on the phone. No police ever came. I didn't think they actually would.

After a few minutes he came back over to talk to the owner of the business I was at. I interceded. Why? Because no one in that whole complex had any legal power to tell me to move that car anywhere. It was me he needed to talk to.

"So just because you don't want to park where you belong..." the man said to me, gesturing to the disability accessible spaces.

"My placard is expired, Sir, I can't do that." I explained to him.

"That's semantics."

"No, it's the law." I will not make myself the worlds biggest hypocrite by parking illegally where I tell others not to park illegally. I even pointed that out to him, but there was no reaching him. I had to walk away.

"You know, it's just a matter of common courtesy." He said to me. I couldn't help but think I was the guy who needed a cane in the equation and it just didn't add up. Common courtesy for who?

So to sum up, he went out of his way to track me down, expected me to move for his patrons when he had no legal recourse to do so, and summed up with how I need to be where I belong, even if I break the law doing it... because it's just common courtesy.

Am I really out of bounds for wanting a public apology? I don't think so. Who is he going to do this too next? Would he still have hunted me down if I was a little old lady? And just to be clear, telling a disabled person they 'belong' in any space is highly discriminatory.

UPDATE: The owner has reached out to me via a third party (I will not mention names out of kindness because of this) to apologize to me. I will accept his apology, however I expect him to meet me in  person to follow this up. He has stated that in afterthought he was far out of bounds and the landlord has made it clear that no parking spaces may be claimed exclusive for any of the businesses in the plaza. I applaud his quick response, less than 10 hours from posting of this article.

UPDATE 2:  Through the third party mentioned above and a couple of other sources, it was made clear to me that our business owner (I know know him as Mr. Steven Kelley) intended to meet me at the shop I frequent to offer me requested apology. It's all I expect. Apologize to me and shake my hand. After that I would have altered this article so that it gave no names to include business. I was there for a whole 6 hours. HE NEVER SHOWED UP.  Clearly this isn't going to happen. So now this article can stay exactly as is. And sadly, that may not entirely be the end of it. There are people who care about me who are not happy with what happened. Word is spreading.

"People in wheelchairs don't go to the gym," says man about blocking accessible parking.

Yes. That is what the man who claimed to be the owner of North American Land Development said to me in defense of his friend who blocked accessible parking with his big SUV.  Allow me to divulge the whole story.

I stopped through the parking lot for Planet Fitness and Books a Million as I sometimes do, in order to check for parking violations to report on the Parking Mobility App. While the image you are about to look at is dated, I've added some pertinent information with random art skills.

Click on image for larger view. Credit to Google Earth.

You can clearly see where I've marked the direction of the construction and Planet Fitness. You can see where the construction company taped off parking for their work. You can see where I parked and where he parked. Important fact here... row we parked in was NOT taped off.  Remember this.

Below for purpose of identification I will call them Owner, Friend (as in of the owner) and Me (for the dialogue). I guess you could call this a "things people say" when they block accessible parking because these guys hit on just about every single wrong thing there is.

I saw the SUV first parked across the blue lines where I indicated. But if you really need an closer view:

Wouldn't you just love to see someone try to get out of a wheelchair van there? Good thing it was just lil ol me parked on the left. Note again the lack of yellow construction tape except dangling from the pole. People were parked clear down  that aisle. It was NOT cordoned off.

So I got out my phone and opened the Parking Mobility App. It had me take down this photo and one of his license plate. I notated the location and went on to the next car in the next aisle over. Yes, there were two violations right across from each other. Not uncommon at all. While I was taking down that information someone called out to me. It was an elder man with white hair and another elder man in a cowboy hat.  Cowboy hat was the owner. I know this because he said it was his company through the hodge podge of dialect and excuses. It went pretty much like this.

Friend: You took pictures of my car.

I looked back at him:  Sir?

Friend: You took pictures of my car.

Me: I'm documenting use of accessible parking, sir.

Friend: I'm not in handicapped parking.

Me: You are parked on the blue lines for wheelchair access. That is illegal and you can get a ticket if they come by.

Friend: I'm 87 years old.

Me: There is no provision to the law by age, Sir.

Owner and Friend together: This is a construction site.

Me: It doesn't matter what you have over there, you parked over here.

Friend says to the Owner: You know what you should do, tape all this off and then none of em can park there!

I'll let you reread that last comment before I continue. 

The Friend left and I went to my car. When I got in it. The owner laughed and shook a finger at me. Then he pointed to the wheel chair symbol on the sign I had parked in front of. I casually lifted my index finger to direct him to the placard hanging from my rear view mirror. Then I got out of the car as he walked toward the driver's side.

Me: Sir?

Owner: You don't look that disabled.

Me: Are you a doctor?

Owner: No.

Me: My doctor disagrees with you. 

Owner: Fine. But he didn't stop you from parking.

Me: Sir, it's the law. Our opinions do not come into play. And if someone with a wheelchair van came here, they wouldn't be able to get out of their van or into it.

Owner: People in wheelchairs don't go to the gym.

I'll let you reread that last comment for the same effect as before.

This is what people need to learn. Their personal opinion does not overwrite the law. Age has nothing to do with being able to park in accessible parking. As another note, had I parked on the blue lines, I would have been in violation as well. It's illegal... period. 

The law is the law and it's time that the disabled community got some respect out of it.

My experiences with Parking Mobility

Since I started in February (it is now April) I have sent in 74 reports on accessible parking violations. For those who don't know what that means, it means people parking in the disabled parking spaces. We prefer to call it accessible parking because access is what it's all about. 74 violations in a small city like Monroe, Louisiana in  the span of 2 months feels like a lot to me. And I got them in an even shorter span of time, if you think about it. I only went out maybe once a week, sometimes twice. My route that I established for myself takes only about 90 minutes. I looked at my progress on the website (yep, you can totally check your progress) and counted the days. I went out exactly 17 days.

So, in reality, that's 74 violations in 17 days. Think about it.

What I want to talk about today is what to do if someone catches you taking down information. People react defensively and you will want to keep your cool and not wind up in a confrontation.

Confrontations not only don't do much to convince violators but can become dangerous and actually hurt the program. That last thing any partnering community wants, is anyone taking the law into their own hands or putting themselves into unnecessary danger.

In all of those encounters that I have had, only a very few have caught me. Maybe 5 or 6. That's just a matter of timing. One thing is for sure, nothing is worth and argument, so walk away. I mean it, just turn and walk away. Even if that means you don't finish sending in the report. It's not worth it.

So what kind of experiences have I had? When first getting started, I had an elder man and his young daughter (I'm assuming she was his daughter), catch me in the parking lot a few feet away from the back of their small car. He yelled and said he had every right to be there (he must have seen me on the news). So I asked where his placard was. He admitted he didn't have one and called me some choice names. I suggested that 3 dollars and a doctors note would fix that for him. He called me some more nasty names and told his daughter to back over me. I walked away.

Honestly, I shouldn't have bothered. I should have just said, "Sorry taking a call." and walked away. He wouldn't have had any idea if I was or not. Seriously, play it off as doing something else.

When you are taking down info, you should probably take down the plate number first and then take the photos, just so you have some of the difficult stuff out of the way first. Then, once you have the photos you can totally step away to a good distance to finish the rest.

On another stop I had a woman who had nothing to do with the situation come up and start questioning me. She acted really odd and circled me like a shark continuously asking me "what's wrong? Is something wrong?" over and over again. She was just weird. But I thought, hey, maybe someone who would be interested in volunteering, so I explained it to her. Big mistake. She stalled me long enough for an angry driver to come out and teamed up with that woman to berate me loudly in the parking lot.  The lesson, trust your gut. Don't let anyone stall you in the middle of what your doing. If someone seems weird, get away from them or play them off like you would anyone else.  I still get a shiver when I think of how bizarre that woman was.

Everything from an educational standpoint. I have had one or two people who were more interested in the educational side. These were people who already had a placard, but it was hidden under dashboard debris or left on the seat of the car. They took interest when I said that putting their placard where it can be clearly seen actually helps our cause. They even moved them to a more visible place right in front of me. But I did not go out of my way to engage them. And I also pointed out that having them as volunteers would be very helpful. Don't know if they took up on it, but it was worth a try since we were in dialogue already.

Basically, don't go out of your way to engage anyone while you are taking down a report on the app. If I want to try and recruit, I ask "would you be interested in volunteering"? But I don't do that out in parking lots unless a conversation allows for it naturally. I use social media.

Another good thing, if you can get enough people in your area involved, is that Parking Mobility will do a training course with you and "certify" you. See my last post on what you need to do in order to get partnered with your community through Parking Mobility.

Look; basically think of yourself as James Bond without the action heroics. All you are doing is gathering data quickly, quietly and safely to support the cause of cleaning up accessible violations in your area. Everyone deserves access to groceries, shops, and health care. People who violate that parking are taking way from someone who not only needs that space, but took the responsibility to go through the steps to park legally. I've seen some interesting tricks people will use to sidestep those same responsibilities.

ID on the dashboard: No placard and no plate means a violation. Your ID won't cut it.

Leaving someone to guard the car: That just makes you stand out. And we don't have to get close in most cases thanks to the good ol zoom feature on our smart phones.

Parking on the crosslines: Sorry that someone else got there first, but even with a placard, you can't park there. The crosslines are for wheel chair accessibility and safety in leaving and approaching the parking spaces.

Take two (or all of them): With just one vehicle. I know you don't want your new car scratched, but come on. Before I started using the app, I came across and elder man who parked his car across, not one, not two, but three accessible parking spaces. That's insane and would have been worthy of reporting. He didn't have a placard either.

So, the idea, to reiterate, is to safely gather the data and send it in. Don't get into confrontations and if approached, play it off. You can claim technical difficulties on your phone or something, but just walk away. Use distance where ever you can when using the app. You can zoom in with your phone from as far as another aisle away. It will look like you are taking a general parking lot photo. Then you can claim you are just taking down general data on parking spaces or something.

And one more tip: If the media wants to talk to you, refer them to the source. Media attention is fine, but it's best if your community is already partnered or you have them talk to Parking Mobility directly.

MS Fatigue will make you PAY

This morning I'm using my cane around the house. I never use my cane around the house. Why? Because I live in a tiny house with one narrow hallway. I can usually balance myself  on walls and counters. Those aren't enough today. It's because MS fatigue is making me pay.

I had a good day yesterday. I walked my son to and from school. The extra walk for school, I was sure would hit me, but I did more than that. I also walked to find the owners of two lost dogs that wound up in my back yard. I even managed to find them! While I felt fine with all the walking and some housework, MS was keeping its own tally of my actions.

The alarm rang across the room this morning. I felt it right away. A feeling like my forehead was full of lead. I had to struggle to sit up, leaning on my bedside table. The alarm still demanded my attention. I gazed through the darkness toward the sound and wondered if I could develop telekinesis. Nope. Dear wife slept right through it and I envied her that. But then, she hasn't been feeling well lately. I had to use the bed for support as I shifted to the end and used the window sill to support me in standing. Next I had to manage two steps to the dresser without throwing myself on the floor. My knees rebelled the moment I went to stand, so this was like jumping a ravine.

Deep breath and shove off. And I made it. My knees wanted to buckle but I held on to the top of the dresser. I reached out and fumbled with the alarm clock. Finally silence. I stayed there for a couple of minutes, catching my breath from a small journey across a room that healthy people totally take for granted. Now I just had to make it 15 feet to the bed room door with nothing to support me. Oh, there's a set of plastic shelves, but I would just pull those over. If you could have seen me, you would have thought I shambled like a zombie from the Walking Dead. Still, I made it and leaned on the door or wall to take a micro-break before heading out to wake my son for school.

Mornings are always tough and off balance, but after a day of actual physical activity, it's always worse. MS, makes you pay for it. Sometimes for days. I'm glad it's Friday and everyone can sleep in tomorrow! Even then, when I get up, it's slow and easy or crash. My wife had to take kiddo to school as I can barely walk even with my coffee in me. But then, life doesn't stop for MS. My kitchen is a disaster area and I'm wearing my last pair of clean underwear. I will have to manage at least a couple of things today.

That's what Multiple Sclerosis does to you. It gives you a day of doing things really well, and then relapses you into uselessness for anywhere up to several days. You don't just get tired for the night, your body malfunctions for a lot longer in response to physical fatigue. That's what it's like. Try to imagine if you can. As food for thought, I leave you with a little ditty by Jethro Tull:

Lyrics:

My first and last time with you
and we had some fun.
wenT walking through the trees, yeah!
And then I kissed you once.
Oh I want to see you soon
but I wonder how.
It was a new day yesterday
but it's an old day now.

Spent a long time looking
for a game to play.
My luck should be so bad now
to turn out this way.
Oh I had to leave today
just when I thought I'd found you.
It was a new day yesterday
But it's an old day now.

And yet we are blessed

This is a really tough blog to write. I'm going to explain something I haven't yet because of several reasons. As I explain this, though, I want you to understand how blessed we are because of the assistance we have had and the people who are working with my son now. Yes, we are blessed in spite of the situation.

I used to be able to order and give out free stuff in my Galaxy Zento biz. I can't now. I've told people that we are bent over a barrel and there have been some medical issues with myself and my dear wife, but I haven't explained this part of the story. Why? Because I'm not looking to bitch or sob. But I have contained this long enough that I really can't just stay shut down over it any more. I need to talk. There are names I still cannot say, so forgive that and just bear with me.

As many of you know I have a super 13 year old son with autism. He's a great kid and we are so proud of him every day. He's gone through so much. Right now he's in a "private school" that specializes in his educational needs. The reason our family has no money for any extras (and barely enough for some essentials) is that we are paying 298 dollars a month to put him through school.

It could be worse, but a wonderful, wonderful company fronted half the years tuition. So why don't we have him in public school? This is the hard part. The part where I can't name names. But it's like this; about two years ago, my son had to spend a few months in a hospital for the heavy stress related injuries caused by the school system. Without going into a ton of details, it's as simple as that.

I've been asked why I can't afford to buy copies of my own game or pay for pro artists etc, well that's why. And frankly, my son is just a little more important than how they think I should try to start my business. But that's just a side frustration. I digress.

Sue them? No. Believe it or not, that would actually hurt quite a few people. I spoke to a very good attorney who won a case for another family against the same system over 5 years ago. That system owes said family over a hundred grand and has yet to pay a single penny. Not only that, but the system will retaliate and drag my son's current school under a microscope to "see if he's getting proper education there". That would hurt every student there that this wonderful school has helped. So, the way we are doing this is the best way we possibly can.

We live by circulating credit cards, not having cable, and keeping it at the bare essentials. And it's totally worth it. My son has been helped so very much, that I love that place. I would rather be house poor than see them hurt him. Because they told me, to my face, that middle school here would not follow his IEP and they had no fear in telling me that because there is just no damned enforcement here. And my family is not the only special needs family they have done this with. They scare families away so they don't have to deal with them.

So, for you IEP warriors out there. PLEASE don't ask who they are. I won't tell you. If you find out, please don't contact them, you will hurt us and countless other families. I just needed to talk it out. I know many of you will understand.

What saddens me is how much some people don't understand (like the elitists of Kickstarter and board games who ran me off). Finding out only that I'm disabled was enough for them to say I was full of excuses and to go away. God only knows what they'd say about my son. Again, side frustration. Sorry.

But we never give up. I fight to show my son that it's always worth it to keep going. I'm so proud of his accomplishments and overcoming. And before anyone asks. We never told him to blame his school system even though he's fearful of certain people if he sees them in public. He sees his time at the hospital as something he needed to help aim in the right direction and learn important life skills. He does not consider himself a victim, rather a growing boy with his own difficulties. Now we just have to figure out what we are doing about High School once we have him caught up, because if we can't move, he will be back in that system again. Not sure what we'll do about that.

How did I get here?

At times I find myself reflecting on what I survived and how I got here. Memories don't like to stay away, but then sometimes it's important to remember. It's important to remember that I survived this long for a reason. Bigger and badder events have tried to take me down. They failed. Why should current events be any different?

Not that anything really bad is happening right now. I've had a few difficulties in recent days and struggling with MS has been nothing less than frustrating.

Yesterday I wanted to bag up some of the leaves that have been in my yard for months. I managed to pull off a bag and a half before nearly reaching collapse stage. I was furious; mostly at myself. How weak it seems that I can't bag some stupid leaves. Yes, they were wet and rotting, therefore heavier. Yes, it was 84 degrees outside and MS hates heat. But still, I wanted the work done. I still want the work done. Oh, I did also use the push mower to do the front yard (by push I mean no engine) which is a staircase of tree roots. I probably should have stopped there.

I remembered that I used to be a soldier. I used to do 50 pushups at a time. I can do 20 now, but it wipes me out for hours. I went to basic training in South Carolina where we marched in 90+ degree heat. Now I can hardly tolerate just standing in 90 degree heat.

But I'm still breathing and functioning. I'm still doing a lot of things that defy the odds. I've lived my life doing this. I've been put down and kicked while down and still got back up. So maybe I need a check list that reminds me?

Abusive alcoholic/drug addict stepmother: Survived.
Severe and violent bullying through school years: Survived
Run away from home and become a street urchin child: Survived
30 years of chaos and loss because I didn't know I had Asperger's: Survived

All that and managed to stay away from drugs, alcohol and crime. So I have a lot to be thankful and for and a lot that didn't take me down in the first place.

I know I can only hold back MS so much. I know I can only keep doing my artwork for so long. I just need to remember how I got here and what's important today. Bit by bit and piece by piece is how I have to do things. That's just the reality of it.

So maybe sometimes, the musings over the past can reflect on the present. It all depends on how I utilize those memories. Or something like that.

Throw the spaghetti!

It's been a tough MS week over here. When I make spaghetti, I break the strands in half. Normally that's no problem for me, but last night I lost my grip and threw them all over the stove top. A couple caught fire and I went into panic mode. This triggered the beginning of a sensory overload because of the sudden stress and panic. Normally such an accident would be hilarious, but I wasn't seeing that at the time. My wife came to my rescue and helped me pick up all the noodles like a game of pickup sticks. Dinner wasn't ruined and we got on fine. If it weren't for a stark hatred of MS, I might of felt like laughing later, because it had to be just a little bit funny. I have these days once in a while where I go from dropping something, to immediately tripping over it, than standing up and bumping my head on a cabinet door. If anyone saw me, they wouldn't be able to help themselves in laughing. I wouldn't be feeling it though.

Several days have been rocky like this so far. Today, not so bad. I'm inking new artwork and pushing forward in my projects.

That's just how it works. It  grabs you and throws you down and you struggle to get up for a day or few. You utter some choice words as you spill and drop things or throw them all over the room because you flinched weird. It's hard to see the slapstick comedy of such accidents when they feel more like an insult from your medical condition. But there it is.

Tough MS days also come hand in hand with depression. Your enthusiasm is about as active as a dead fish. That's been mine the past couple of days. I recognize it too. I know it's happening and I'm open to admit it during the course. And I feel bad because it rubs off on others and makes the day sad for everyone. So I have an internal wrestling match, trying to cough up a chuckle or two. Sometimes it works, but it feels fake to me. And it is.

What can you do when you are having a low MS time? Not much. Ride it out. Get an extra nap in. Take a walk if you can. Watch funny movies. All the basic tools against depression as you wait for the MS tide to go back out again. When you do feel better, you best take advantage of it. Try to do those projects that you've had to put off for days on end.

Finally, you have to remember that it's not your fault. You have MS and it's a rotten demon to live with. You didn't ask for it or invite to live with you. It pushed its way through the door on its own. Keep your chin up and keep fighting the good fight.

How Multiple Sclerosis affects my artwork

Recently a very cool friend of mine received the honor of an article in the Daily Light paper about how MS affected his music and ability to play. You can check it out HERE. I am so proud of my friend, Chris and all he's accomplished on explaining MS to people and raising awareness. It's an inspiration to me.

Now I'd like to share an online quote directed at me some time back.

"I don't think your condition is an excuse for bad artwork."

As many of you know, I'm the creator/writer/artist for my own universe of characters called, Galaxy Zento. To suggest my artwork is perfect would be a lie. I'm not perfect and I do my best with what I have left. The person who made that comment had no idea what they were talking about. So let me explain what it takes for an artist to put out awesome artwork.

Knowledge of form, good hand eye coordination and cognitive ability to transfer and translate from mind to paper. Seems simple right? Now lets look at that MS does to a person.

It destroys your freaking nerves. So hand coordination is shaky at best. If you look close enough at my work, you will notice that all my lines are wavy. All of them. Circle? Wavy circle. Oval? Wavy oval. Arms? Musculature? All with little waves everywhere. I can correct some on digital but even there I have to do what my messed up system allows if I ever want anyone to see it (this year).

Cognitive function is a mess. It's like trying to strain your thoughts through a colander or sifting mechanism and then make sense of the resulting mess. What I try to see in my mind and translate, is a fog. So I'm literally making up details as I go. Sometimes I can see it in my head really well. Other times, I can't see my character's faces. Try to figure THAT out. I get basic forms and basic shapes, then I have to muddle my through to make them work.

Now I tell myself that I simply have to own my own style and never give up. But it's not always that easy. There's so much of the story to tell and I don't know how much time I have to tell it. I'm racing against a clock of unknown time. It's headed for a point that I won't be able to draw a stick figure.

If you follow the link about and go through the albums, you can see differences in the pictures that show days that my poor head wasn't quite up to the job at hand. Sometimes I come up with good looking stuff, sometimes I don't and I have a lot of  trouble fixing it.

"Just find an artist." I do have someone on board, but please don't say this to me. I don't have up front funds and it dismisses the fact that this is a huge piece of myself that's fading decades before it should.

So, as you view the artwork of Galaxy Zento, know that every success is dedicated to others like myself (especially youth). Someday, I may have artists who put in because they believe in my reasons and can fall in love with the characters, but until then (and even after) I will continue this fight.

Things you should understand about the education system.

 Every state and more so every city has their own way of running education and handling IEPs. What you could do for your child in support and educational experience is literally a great spectrum of its own. It's important to know that, if you have a problem, you can't just bring federal law down on their heads. You have to go through proper channels and that means the State level. How that state handles or enforces federal law is entirely up to them and yes, that's mostly considered legal and accepted by the "higher authorities". So if you are in Florida and have an IEP complaint to make, you have to make it to the State of Florida Department of Education. You don't get to just jump to the White House. Some places may cave to the threat of a complaint, but that will be the exception rather than rule. Because of the process you will have to go through,, many of them will be pretty calm about the issue.

Florida is a state of nightmare tales of abuse against children in autism (or other disabilities) and you can find tons of news media all over the internet. States like, Wisconsin are generally more successful. If you want to have some fun take a trip to Greatschools.org and see how schools in your burg measure up to others around the country. Check anywhere you want. You'll be amazed. For even more comparison, compare that to the 2009 NAMI grading of the states. You can pretty much see how things will be for your child in school on the comparisons. But influences go deeper than that. What kind of things go into affecting how your state and city run their system?

Politics: Where do you think common core came from? Politicians. It's all done with Ordinances, Acts, and other nonsensical business you may not even get to vote on.

City Size: Are you in a major city or small town? Small and isolated towns can be the most differential in school from the rest of the state. Even that may be small differences, but I'm sure I have readers with stories.

Local Beliefs/Traditions: What are of the country are you in? Are you in the Bible belt? Maybe you live in Tornado alley or way up north? Beliefs and traditions of the place you live in will have a direct impact on education and how it's run. It's not supposed to, but it does. In Utah, the Mormon Religion is majority of the population. That means most of the teachers are Mormon too. Their distinct beliefs carry over into the class room. I know this because I lived in Utah for my 9th grade year after being in Nebraska. Totally different worlds.

What they personally think of YOU as a parent: I've had one school commend me, one judge me as a parent (and they all do but I mean harshly) and one label be as a difficult parent, all for doing the exact same thing. It's common knowledge that you can't get along with everyone. But we are supposed to be professional too, right? Well. Definitions vary. One thing that is for sure, if the teacher really doesn't like you, it will affect his or her point of view toward your child. The common thought on parents of  special needs students is that we are a colossal pain in the ass. That stigma (and not all teachers are like this) can make it hard to establish a good parent/teacher rapport.

And all of that is just in Elementary school.

The reason I post this is because, as I look over stories on the internet; I see people lending advice about federal IEP Law as if it's exactly the same in ever state, county, and city. Yes, I know it's written the same, but getting it enforced is a totally different universe. And situations vary so that the law may not be broken by some technicality. It's always best advice to consult a local attorney. Consultations are usually free.

If you are a parent of a special needs student with an IEP, you owe it to yourself to find out exactly what your state's procedures are in handling complaints and education in general. How do they enforce their policies? Too often we wind up surprised and that's never a good thing to be.  But what do you do if you are in a bad situation? In my next installment, I'll tell you.

Autism: Dealing with Ignorant Comments

You all know what I mean by ignorant comments. It's the witty things people in public say without forethought regarding us or our children an autism. They typically do the same thing for people with disabilities too. It's a never ending headache that some special in-duh-viduals seem bent on delivering. Well, enough. No more Mr. Nice Guy. It's time to at least put a humorous spin on this migraine that is public ignorance. I've also considered that maybe it's not their fault. Maybe they're addicted to the taste of their own feet. Try this next time someone walks by and delivers a stupid comment. Imagine them having to bounce around on their buts because they have both legs in their throat up the knees.

Now for a few favorites from the public blather mouths.

1-"He (or you) looks normal to me."  I hate this one. Time to put this person in their place hard:

"Oh, where did you get your medical degree?"  Watching them bumble in response to that is funny every single time.

"And what did you think we'd look like?"  Again, funny every time.

"I left my hockey mask at home." Watch their eyes grow three sizes.

2- "Oh what's his special skill?"  Because we love having our children referred to like sideshow attractions.

"Knife throwing." Say this with a perfectly straight face regardless of your child's age and get set for a look of sheer terror.

"Putting up with other people's ignorance." To be said casually as if you knew the question was coming the whole time.

"Why, do you want to buy tickets?" If they say yes, charge them 50 bucks and say it's non-refundable.

3- "Maybe you should spank him."  Or some similar idiotic phrase.

"What? You want to spank my child?" Said loud enough for the rest of the public to hear. Then watch that idiot make tracks in a hurry.

"Maybe you should get a lobotomy." Hey one stupid suggestion deserves another.

"Thank you for your useless advice."  If they are even halfway listening, it should get their goat.

4- "Shouldn't be in public." Comments like this one are usually said from one idiot to the other about you or your child. Of course they seem to want you to hear them.

"Neither should you." If they can't handle what the public has to offer, they should stay home.

"It's rude to talk about people like that."  The old "call em out" routine has a pretty good track record of shutting people up.

"Wow, you're helpful." Because no, no they aren't. And this one makes a good comeback for several situations.

Now, you probably shouldn't actually be mean to these people and some just can't be taught anything. But it sure can relieve some stress to think of some snappy comebacks to try and kick start their poor addled brains. In any case, here's hoping you got a chuckle. Don't let public ignorance get you down.

Letters that target the disabled are sick

Let me jump right in with the link, because until you've seen it, you won't be as boiled over as I am right now.

FAMILY IN SHOCK AFTER LETTER TARGETING SON WITH AUTISM

Go ahead, it will open in a new window. Then come back, I'll wait for ya.

Now, as an added piece of asshattery, did you read the letter itself? No?

I so very much hope and pray they find this person. Who ever this is, she's the one with the problem, not the autistic boy she's targeting. Anyone who suggests to me that I euthanize my child is likely to lose some teeth. Yes, I'm a weak man, and that would be about enough to make me say "Oh screw this!". 

The person who wrote this letter is a either a hateful idiot or has a whole encyclopedia of her own problems (likely both).  But I tell you what, they are looking for her and really, it shouldn't be that hard to find her.

1. She's close by. Very close in fact. Walking distance judging from the fact she "hears" the autistic boy's noises outside. 

2: She has children as in plural. She even says so in the letter when pointing out that the noises scare her "normal CHILDREN". I'm pretty sure, only a handful of Mom's in the area are going to fit the bill.

Another point. Look at the paper. It's either previously used xerox paper or came from a printer with a toning problem. Either Mommy has a bad printer or uses paper from the recycling bin, or Mommy did this at work with paper form the recycling bin. If that's the case, Mad Mommy works in an office setting. 

Now I'll go out on a limb and say that this isn't the first rager Mad Mommy has been on. I would say, not only does she have her own severe mental illness issues, but may also have a record. No one tells you to off your own child unless they are cruel trolls or severely mentally ill. It's just that simple. 

Now, she's a coward; so she's going to put on a really big "Nice Mommy" act when spoken to. She'll sound just like the parents who really are shocked and disgusted, only with her, it will be fake. 

So, for you folks in the neighborhood manhunt, let's recap:

She has two or more children, is severely stressed out and bad tempered, lives in close walking distance, may have a record (may even be a problem neighbor already), and either works in an office setting or has a really crappy printer and uses scrap paper.  

I'm here to tell you, it would not take me long to find this person. Of course, no one would want me to do this.

What is wrong with people? Because this isn't a rare issue. It's happening in more and more places. People deciding to go all nasty on families who have enough to struggle with. Psycho's who somehow think they are the disability police will leave notes to harass and even threaten.  Earlier this summer I saw a case where someone put a letter on a lady's steering wheel, nagging about parking in the disabled spot. According to the author of the note, the lady didn't "look disabled". Well isn't that nice?  Too bad they're such cowards. Even the jerks in Portland who claim they will out people with disabilities for some psychotic political rampage.  Look it up.

But, people, if you get a threatening letter, don't be weak like me. Call the police and file the complaint. Put them on the news. Press charges. Don't go to jail for them. That's more where they belong.

With a special message for autism

It's finally available; my second book. It's a collection of 12 short stories that will make you laugh, gasp and wonder. While I need to advertise my book, this time there is something special I've added.

At the end of this book is a special note from the Author (me) regarding living with Autism, Aspergers, MS and other conditions. We are such kin in our comparable medical issues that it felt right to be inclusive.

It means a lot to me to inspire others, especially our youth, with my work. I know, not everyone can do the same things, but we can all do something to enrich ourselves. As I've said before, I'm not talking about going out and getting some back breaking job when you may be unable to serve on an employed position. I'm talking about doing something just because you enjoy it and it's good for you.

I grew up without anyone knowing that I had/have Asperger's Syndrome and Bipolar disorder (yes you can have both). In my age and demographics it wasn't even a consideration. So I was never tested for it. I was only tested for my IQ. Being ahead on IQ and considered a borderline child genius (yes, I was) didn't help with the severe bullying in Jr. High. I went home bloody at least twice a week. I had to hide that too. I had to clean myself up somewhere on the two mile walk home from school so my Step-Mother wouldn't know. Why? Because she abused me too. I fought back a couple of times and wound up with police at my door and more trouble than it was worth.

My Stepmother only knew how to scream and yell while downing one beer after another. I could tell you more about her daily manner, but I'm afraid it would trigger some of you. Suffice to say, I wound up having my own PTSD from the things she did.

So I left home at age 14, wound up in another state and then out of school at 10th grade. I had to join Job Corps and get my GED to make my way forward in life.

Despite all these things, I carried myself forward. I had jobs and relationships. I got married (thought not always for the right reasons) and now have four wonderful kids. Let me just say that those kids have made anything that went bad in my past relationships worth it 100x over.

Now, I get to add Multiple Sclerosis to the mix. My knees don't want to hold me up most days so I have to us a four pod cane. I get dizzy spells and exhaustion at ridiculous times and often without getting much done. I have to pace myself around my household chores and I'm losing the coordination in my hands (as well as the rest of my body). I walk into freaking walls, people. Not fun.

But now I write and do my illustrations (in spite of my hands) and refuse to give up. My son needs to know, that just because Dad is on a cane, doens't mean he's helpless or can't do anything. On top of that, I want others to know that they can do things too.  I make my heroes and write my stories that have been in my head since childhood. But now I do them with a new purpose. And I'm not going to stop.

If you or your kids wonder what they can become because of their conditions and difficulties, please share my story with them. And I'm not the only one out there who can do this either.

And you don't have to be some prodigy that gets famous, okay? Do it because it enriches you and makes you feel the power of accomplishment. If that's reading a hundred books a year, do it. Shooting baskets and learning sports, do it. Just do it.

I plan on sharing this often, so I apologize in advance for anyone that offends. For the rest of what I do, visit GalaxyZento.Blogspot.com or my Facebook page under the same name. Free reading for GZ Legends and lots of illustrations that I do, no matter what my head and  hands are doing to me. I know there are a lot of you out there who can relate.

So, what are you doing to do?

You will always be criticized

In an effort to make a positive from a negative; lemonade from lemons, I write this. Recently I posted this message for my Galaxy Zento page of heroes that I write about and draw.

With your help and sharing, my project to inspire others with my Galaxy Zento project has been growing, slowly, but growing. I know it can grow more. The simple truth is, the more people who click like on Galaxy Zento, the more people it will reach. The more who share it with its message the more likely that will happen. I have a modest goal that I would like to reach by the end of next month. I would like the page to reach 1000 "likes". Can you help? Do you know anyone who loves original content, characters, and stories? How about practicing artists? Anyone who just wants to practice their art skills and get posted as a guest artist? As I'm preparing to post GZ Legends 50 (a milestone post!) I want to spread the word. I want people to know that you can still do what you love, or find something to love doing even with disabilities. You can still grow as a person. You can still inspire others. I will always support autism education and projects that help people grow as human beings. You can help me make this grow. What do you say folks? Its not enough that I share to you, when you share it reaches your people. So, give it a twitter and give it a share. Let others know that a guy with multiple conditions is striving to inspire. This week, I go to see my second oldest daughter graduate. So there will be some delays on other postings. A great time for your help. Love you all! Be blessed and inspired.


I also posted this:


So I posted a very special message on my wall. You know, growing up with Asperger's or any similar condition is not easy. I grew up with no support system because no one knew what was up with me. They didn't know what was "wrong" with me. Now that I grew up through that, I want to use any success I have to inspire others (especially my son as most you know, has Asperger's/autism). I want to give back for every step forward I make. So I hope you'll visit my page and check out what I'm doing. My goal is to get my project page Galaxy Zento and its heroes up to 1000 likes in the next month. You can have a livable life. You can do great things. It will get better. Let the inspiration carry on.

On the same day that I posted that second message I was accused of doing what I do, solely for personal gain. 

On that I will say that if personal gain was all I wanted, you wouldn't be able to go to the Galaxy Zento blogspot and read my stories for free (now up to part 49 of an ongoing story). I wouldn't bother scheduling to talk to college classes about what it's like to grow up with or have autism. I wouldn't bother. I wouldn't make videos, I wouldn't do anything but say "buy my book". That would be it and that would be all. No, I want all my success to do something more. Those who don't believe me will just have to wait and see. 

As you go forward in life, this is something you will have to remember to. Your best efforts, best intentions, and anything else you do will always be misunderstood or criticized by someone. Still, you must never give up. You must go on in spite of these people. Shut them out. One of these people will never have to be bothered by my posts again, because I blocked them. You don't have to block people, unless they are harassing you. But, you don't let them steer your life and ambitions. Don't let them mess with your goals because they don't understand you.

Look to history and see how many famous innovators ignored the criticisms and achieved great things for the world around them. 

Martin Luther King Jr. was told he couldn't do it.
Ghandi was told he couldn't do it.
Even Mother Theresa was told she couldn't do it. (Yes I know I'm not any of these people)

What do they have in common? None of them listened to the naysayers. Don't you listen to them either.

So what if my way involves selling some low cost books? Doesn't everyone have to do something in this world? Would I set a better example from my couch? 

I have yet to complain about my book sales, and I won't. The book is there and I would be stupid not to advertise it. I would be stupid not to try and take myself further in life. What kind of example would I set for my message if I did nothing? Writing a book was a great accomplishment for me and I refuse to let anyone come throw a big soggy blanket on it because I want to inspire others with my work. 

Also, I  never claimed to be some non-profit benefactor in this. I did say that I want to give back and that will continue to be my plan ever forward. As I said, those who don't believe me will just have to wait and see. They don't know me and their assumptions cast a shadow on them more than me.  That is how you must move forward too. 

So, want to write a book? Do it!
Want to ride a bike? Do it!
Want to take up golf? Do it!
Want to paint pictures? Do it!
Want to make videos about taking sledgehammers to wrecked cars? Well, yeah, do it!

And, if you do get paid for it, what would be wrong with that? I would call you lucky! Then, show others your success, especially if you have a disability! Let your accomplishment inspire others to live too! That's my goal!

Now.... what are you going to do?

Persevering with Disabilities Spotlight: Donna Bell

Living past disabilities takes guts. Today I am going to tell you about someone who must be some kind of commando on that point. Her name is Donna Bell of Louisiana. 

When Donna was 19 she was in a terrible car accident that sentenced her to life in a wheelchair without use of her arms or legs. She has no movement from the shoulders down. I'm sure there was a gut-tearing transitional period for her, but she's become something far more amazing. Look at this:

I love Groo the Wanderer and she did this picture with her mouth. That's right, her mouth. Now, I tried this. I put a pen in my teeth and tried to write my name. I won't even post the result. It was less than chicken scratch. Learning to do this is not easy by any frame of the imagination. I would have an easier time becoming left handed. And yes, I'm an artist. But you know what? She doesn't stop at drawing:

Yeah, crochet. She crochets with her teeth. I showed this to my wife who does crochet and she couldn't fathom it. But there it is and she's been recognized and seen in action by her town's media. Over the years, she's developed into an artistic dynamo and she's right here in Louisiana.

Okay, all that being said, it's time for the turn off section. This is the section where I tell you what's up and you say "oh not again" and walk away. But I challenge you  not to do that. These times of ours call for humanitarian efforts and the deserving should get the assistance. Some people just deserve to be rewarded in life. Yes there is a fundraiser. It's to get this awesome woman a wheelchair accessible van.

Still here? Good! I commend you. I know there are fundraisers a billion out there and we seen ten of them every day. Much as we would like to, we just can't help them all. That being said, I ask you to consider this being one of those times you pitch a five spot into the bucket to help someone deserving. Someone who's been a hero for themselves at the very least. She's never had a powered wheelchair even and look at all she's done. She deserves it people. Now, in order to put a face to the name and see the details, I have to give you a link to my friend Rodney Pike's page. He has even more details, more art and believe me; it's amazing.

LINK

And if you can do nothing else... SHARE THAT BLOG. Not this one, the one in the link! Come on folks, show some compassion for a fellow artist and someone who's not just crying and whining in life. She's a trooper and she deserves this! My man, Rodney can give you any other information you need.

Thank you for your consideration!

Autism in the workplace

I'm going to use the term Asperger's for high functioning autism here because it's recognizable and familiar. I could say HFA too, but whatever. This is for those who are able to go out and seek employment. You know who you are.

This post is inspired by a comment a while back:

"I've got Asperger's syndrome and so will probably be re-diagnosed as now having mild autism. Since resources are limited, those with a supposedly less severe disability such as myself will likely lose what little support we are getting.

I've read many blogs on the subject and no-one seems to be discussing the fact that the needs of people across the autistic are so very different. Many people with Asperger's, myself included, are capable of living fully independent lives but need a lot of intensive and expensive support...especially in the area of employment"

First of all, we would do well to remember that our needs across all of us vary dramatically from one end of the spectrum to the other. That's why it's referred to as a spectrum. It's hard for us to do that sometimes because of our social blindness that trips us up so much. That same "social blindness" (as I call it- not a medical term) can really screw things up on the job.

Seeking employment with our conditions is a daunting task. Sometimes, as you try to explain yourself, (especially if you do it in an interview) you can almost see the interviewer rolling their eyes:

"Oh gawd, seriously?"

And you know you aren't getting that job. It's a nerve wracking experience to say the least.

So what do you do? Hide the fact that you have any condition? Sure, but then if things mess up somewhere and you try to explain it, you wind up with them either not believing you or penalizing you harder. I've had this happen personally. I've lost jobs because I thought I was following directions and they came around and said, "How could you do that!"  Employment is not such an easy world for those who have autism at any level. No, that doesn't speak for everyone. Some never have a problem, or at least don't look like it. Others with more difficulty wind up with unforgiving employers who have no patience.

And that's what we need, patience and often direct and literal instruction on the job. In todays financially stressed world, there aren't as many patient employers as there should be. So there are some things that we need to do the best we can.

1: Never give up looking for ways to be employed or self supporting.
2: Get career minded and seek schooling for what interests you most.
3: Seek out special programs in your area or state that may help you get training or work experience.

I know, not all of us can do this, and many will need help and guidance. That's why the rest of us advocates need to educate employers and bring this to the attention of our politicians and special programs. Employing someone with autism may take some adjustment and clear communication skills but there are rewards for doing so.

1: Detail oriented. We can be so detial oriented that, once we know our job, we don't vary. And we'll work hard to prove it.
2: Loyalty to company. Once we get into a company and work for them, we can be fiercely loyal to who we work for. We'll be ready to go to bat. We'll help with special projects (so long as we have clear instructions).
3: While not all of us can be awesome with the public (we'll sure try!) many of us can be awesome in behind the scenes project support that will knock your customer's socks off.

Now some final advice for you seeking employment. Something you need to ask yourself:

Are you responsible with your medical conditions? If not, that can and will get in the way of your employment opportunities.  For example, if you have bipolar disorder (severe enough to require medication) and you don't take your medication, you could have problems. It's one thing to be doing the best you can with what you have. It's another entirely to be irresponsible, commit crimes, drink, do drugs, or not take care of yourself. So, if you want to succeed here are a few things to remember:

1: Hygiene... go to work clean! Take showers, brush your teeth and hair, clean yourself and wear clean clothes. Use deodorant! Use soap! Do it everyday if you have bodily odor problems. As you get older you will find your body needs it more and more. Mine sure does!

2: Stay out of legal trouble! Don't get into illegal drugs, don't abuse any drugs, don't drink alcohol. Stay away from people who do these things.

3: Don't be lazy. Get out of bed in the morning, be on time or even five to ten minutes early. Keep to your schedule.

It is hard out there. We do need support. What's sad is that there are areas where we still don't get that support and my own story proves it. I think it's about time I actually share that story.

Overcome: Never give up

I find myself having to keep this cane of mine closer to me lately. Apparently, my sense of balance and the nerves in my knees conspire to throw me on the ground more often now. I'm trying some new medication for the trembling to steady my hands and help me get more sleep at night, but we still don't  know what this progressing condition is that I have in my collection of "conditions".

I especially want to keep my hands as useful as possible for as long as possible for sake of my current mission. As many of you know know (who follow along), I am growing the project of my fantasy universe, Galaxy Zento as a symbol of many things.

It is a symbol of overcoming, of "doing" in spite of conditions, of functioning with these medical conditions. It is about functioning in spite of Autism, Traumatic Brain Injury, and whatever the other thing is (next MRI will of full spine).  It's about abolishing the stygma and myths that come with all of them as well.

So far, I have written two novels on my project with one under agency consideration as we speak. I have drawn, circulated and donated an anti bullying poster to my son's elementary school. I have drawn and circulated an autism awareness poster with another of my heroes as well. I won honorable mention from Writer's Journal for a short story of one of my characters. I have drawn, inked, and computer colored over 200 illustrations. I've put together about 100 custom miniatures of my characters too. I'm still writing and working on showcases for the GZ blog. And I'm still not stopping.

I'm doing this to show my son what you can accomplish, despite what may or may not be "wrong" with you. My son, like me, has autism. I'm doing this to show anyone who has doubts about themselves for the exact same reasons, just what you can accomplish.

Yes, I walk with a cane (a four pod cane no doubt), yes I am disabled, yes I have to take daily naps because I run out of energy fast...... but I'm still ticking.  I'm still going and I don't intend to stop.

Galaxy Zento, is an example and I always want it to shine that way, no matter where it ultimately lands. The fact is, what matters is, that I never give up.

You can do what you want to do or find something new. And I'm not talking about getting a job when you are disabled. I'm talking about, your personal worth. You are worth something. You must never give up.

Learning auto immune diseases

This new journey I've been on has given me a lot of reason to research and learn. I have gained a whole new insight to auto-immune diseases and what they do.

An auto-immune disease is a condition where your immune system starts to attack your organs or nervous system in various ways. Like with Autism, there is a wide spectrum of these conditions and they can be very hard to pin down and diagnose. This causes a lot of stress between doctors and patients. Some patients complain that doctors think it's all imagination.

Thanks to two MRI's we know this isn't my imagination, but that's the only comfort we have. Blood tests and a lumbar puncture haven't proven helpful. My research has shown me that it can take years for them to show up there depending on which one I'm dealing with.

I recently learned that some people with auto-immune disorders have to watch out for the common cold. I had thought this was only a problem for immune-suppressed conditions, but I've learned differently.

First, when your immune system is attacking all your organs, it compromises itself and ability to handle real threats. Now, this isn't a problem for me in that way. Instead I learned something else. A cold can still take me out.

I have a very strong and over-reacting immune system. Imagine someone driving a nail with a wrecking ball. Sure, nail goes but so does the building. That's my immune system. Imagine how much energy that drains out of you. Recently our household was down with the flu. Both wife and child had their upchuck moments but not me.  I barely have a cough, but I lost all energy and couldn't get anything done. I was down for a whole day.

So, having a super strong immune system can work against you. I'm still trying to learn what all I can do to keep myself going. Looks like more trial and error.

Do you think?

So you're standing in line somewhere and feeling impatient. The line has been long and you're getting tired. Maybe someone ahead is working slow or someone else is getting confused. What ever the issue you know who it is and you have something to say:

"You disabled people should get out of the way and let a real person do the job." Or maybe you're more of this line of thought, "You disabled bums should get a job and get off my taxes." Either way, you consider them a waste of space and nothing but in your way. And that person heard you, and you wanted them to. They grit their teeth and shuffle on with what ever they were doing. They don't say anything back to you but someone certainly should.

Do you think?

Do you think, as a child, when the teacher asked them what they wanted to be that disabled was the first thing they said? Do you think they said it with a great big smile because they knew it would get in your way?

Do you think they enjoy not being able to do all the things they once enjoyed? Do you know them personally and know what made them that way?

Do you think that soldier who fought for freedom celebrated that shrapnel in his head? Do you think he feels like a success story as he now muddles through his day?

Do you think that guy in the wheelchair was hoping for a roadside bomb to amputate his legs? Do you think that anyone asks to be disabled when they say their bedtime prayers?

Do you think children with down syndrome and autism somehow planned it that way? Do you really think that person would rather be disabled than gainfully employed today?

Do you think they enjoy feeling worthless and unable to do normal things? Do you really think that being on the internet is the same as doing a full time job? Because, since they can move their fingers, that means they can be hired for anything. And who will you direct them to for this magical employment? Maybe it should be you.

Especially, do you think it really helps to hear the cold and callous words of someone like you who knows nothing of what they've been through? Do you think you're helping?

I didn't write this today because of anything recent that happened with me. I wrote it because of all the times I see scorn for the disabled and more for the fact that they want awareness. The truth of the matter is, if it weren't for the people who so flippantly throw their ideas out with callous disregard and lack of knowledge, there would be no need for awareness. If it weren't for people who think that the disabled should just rot in a room somewhere (like "you")there would be no need for the parades, walks and marathons.

So next time you see someone out for awareness with their flag held high. Remember when you scorn them, that you are the reason why.

Perceptions in disability

The other day I was waiting for a bus in the winter cold. I had one of those plastic shelters to sit in and it broke off the wind, but cold is cold. There was a young man walking toward the bus stop and he had a staggered gait that might make you think he was on drugs or drunk. Knowing the possibilities like I do, I realized there could be other reasons. Still, I hoped he wasn't on anything as I was about to sit with him in the bus stop.

He may have been 18, I'm not sure and he wore gloves with the fingers split and worn. His coat had a few holes in it and he sat and rocked slightly facing away from me. He turned toward me slightly and asked if I had the time. His voice showed the struggle to form words that told me he wasn't on drugs. He had a medical condition. The young man has cerebral palsy and meets the challenges of getting through each day with a physical disability.

We got to talking and he told me that he deals with a lot of people who either push him to hard or treat him like and infant. He often wishes they could see him for his critical mind (and he is pretty sharp, let me tell you) and let him set his own pace. When he learned that I'm actually a high functioning autistic his eyes lit up as he saw someone who understands.

Then he said something that I found interesting. He thought that I must be very fortunate that people cannot see my disabilities (as I do have more than autism) so openly. So I discussed this with him and mentioned that there are drawbacks to not being obvious. People have just as hard a time, if not harder, understanding disability that they cannot see. While he gets people who push too hard or treat him like and infant, we get people who feel sorry for us or don't believe us at all.

"So our frustrations really are very much the same," was his thought and realization. And indeed they are. But what we can do is important and can teach others a great deal about us. This young man likes to work on cars. I mentioned that the ones that treat him too much like a child, might be educated to learn how capable he really is. As for the impatient ones, all we can do is shake our head and keep forging forward.

Talking with him was an uplifting experience because we were both able to use some critical thinking, a good exercise for any day. And a normally boring bus ride became much more interesting.

Disabled Advocates, Unworthy?

I've been thinking about somethings that have been said about advocates who are disabled recently. Comments that suggest an advocate isn't worthy of being called an advocate if they are on disability such as SSD.

First let me address this myth: SSD is NOT welfare. Social Security Disability is based on what you pay into it through out your working life. That's right, in order to have SSD in the first place, you have to have WORKED in your life. You have to have held actual JOBS. I didn't get to be on SSD because I whizzed my life away. I got hurt. It happens to lots of good people.

Now there was a comment about people on SSD not being allowed to use their funds for donations or luxuries. Well, first, they don't give you enough money in the month to live in any kind of "luxury" or to afford "luxuries" as most people would see them. So that's counterproductive right there. It just doesn't happen. If I could live in luxury, I wouldn't be on SSD. How much do luxuries cost? What kind of luxuries are we talking about? Should people on SSD just live as hermits and never go out of the house? Should they be grounded in life from going to the county fair or movies? See? Ridiculous.

As for making donations to causes, they have every much the right to make a five dollar donation to a cause as anyone. And if the SSD funds is really that much of a sore spot, consider this: People on SSD are actually allowed to hold a JOB! Yep, there is a limitation of hours and pay amount before we start losing benefits, but it is allowed for us to work. That means we are allowed to make some of our own money we can do what we please with.

Now let's get to the idea, from a quote I saw, that suggested that disabled people are not worthy of being advocates. Well why not? Let me give you a special word for this attitude; DISCRIMINATION. And just what should disabled people do? Sit at home and give up on life? Stare out the window in depression? Or would it be better if they actually do something? And who knows what we live with more than us? Who better to stand up for my rights than me? Who better to stand up for your rights than you?

I'm doing something, with my time and my life. I'm trying to better myself in spite of my disabilities. I should think that's commendable, not the other way around. Of course I know why this comment was made at me, it's because I decided people should be informed on a situation, but that's not what this blog is about. It's specifically about the idea that being disabled makes you unworthy of being an advocate.

And, if the person who says that claims to be an advocate, are they still and advocate? NO. But this person was hidden behind would could have been a false name, so I don't know who they are. But the comments were on another blog that claims to advocate (words will get switched there so I use the term loosely).

So, to recap, because I'm on SSD, I shouldn't write my blogs and educate on living with autism. I shouldn't stand up for others. I shouldn't help families find resources like I have. I shouldn't give any advice on anything. For that matter, I shouldn't spend money on a cup of coffee. I shouldn't have any entertainment in my life either. I should just sit in a room and stare at the walls. I'm being sarcastic, but you get the idea. That's discriminatory and I won't stand for it. Neither should you. Keep living people! Disability is not the end.