Media Coverage reflecting epilepsy

[Belinda5000]

I'm on medicaid they won't pay for my Clonazepam increase.
So I'm calling the Governor's office today and finding out who I talk to.
So I can talk the people in the state senate.
The medicare D doesn't cover anything in the Valium family.
I'd like be able to tell them all the people with E that take these meds but aren't able to get them because of the way my state is running the government.

Belinda

[santaclaus]

My main purpose of wearing the full suit ( which I will wear walking around, but will not play in it) is to see if I can get some short video clips, and explain what I am trying to do. You see, I want to be involved in raising millions of dollars for different charities, and know how powerful the image of Santa is. I also desperately need a place to stay, and if I have to, will do anything with the Santa image to help find me a place to stay. At this point, I don't care if I come across as being crazy, and if people associate epilepsy with being crazy because of me. I just want a place to stay.

If done right, my ideas could help out many people, and I am full aware of it. However, if some sleazy promoter wants to pay me to help promote strip clubs, I will do that too. It is a real shame because I can see all the good with this idea. Unfortunately, nobody has stepped up to help me, so now there is a great chance I will soil the image of Santa. LOL!! I don't even care at this point, but I do know that I could still get epilepsy some press. It might not be positive like I hoped, but it will be some press.

[alivenwell]

I'm on medicaid they won't pay for my Clonazepam increase.
So I'm calling the Governor's office today and finding out who I talk to.
So I can talk the people in the state senate.
The medicare D doesn't cover anything in the Valium family.
I'd like be able to tell them all the people with E that take these meds but aren't able to get them because of the way my state is running the government.

Belinda

In the news they are saying a really high and disturbing percentage of people are declaring bankruptcy because they simply cannot afford basic necessities. It's happening more severely to elderly people or people on a fixed income. It's downright shameful to see this trend.

[Belinda5000]

I'm not a senior citizen I get SSDI social security disability

Belinda

[alivenwell]

I'm not on any SSDI, but I know a fixed income can really be a limitation for all kinds of stuff. It bites when it's necessary stuff.

Unfortunately, I have not figured out the system either. I know that some people seem to live beyond their means and I have no idea how they do it. I'm trying to hang on to my employment for the sake of health insurance and drug coverage.

[haird18]

I live off of SSI of $637 a month and $87 on food stamps. Fortunately for me many years ago I qualifed for a program called "CBA" or Community Based Alternatives it helps pay for things that Medicaid won't and you can only qualify if you have mutiple disabilities and are home bound.
David

[Shelley]

for yanking mad magazine.

Hi, Ben,

I spotted the article about Circuit City and MAD Magazine on your site.

fyi, I became aware of this "situation" only this morning, and I have sent a note today to the Editors of MAD Magazine.

Speaking as "an embarrassed corporate PR Guy," I apologized for the fact that some overly-sensitive souls at our corporate headquarters ordered the removal of the August issue of MAD Magazine from our stores. Please keep in mind that only 40 of our 700 stores sell magazines at all.

The parody of our newspaper ad in the August MAD was very clever. Most of us at Circuit City share a rich sense of humor and irony...but there are occasional temporary lapses.

We apologize for the knee-jerk reaction, and have issued a retraction order; the affected stores are being directed to put the magazines back on sale.

As a gesture of our apology and deep respect for the folks at MAD Magazine, we are creating a cross-departmental task force to study the importance of humor in the corporate workplace and expect the resulting Powerpoint presentation to top out at least 300 pages, chock full of charts, graphs and company action plans.

In addition I have offered to send the MAD Magazine Editor a $20.00 Circuit City Gift Card, toward the purchase of a Nintendo Wii....if he can find one!

All the best,

Jim Babb
Corporate Communications
Circuit City Stores, Inc.
Richmond, VA

http://www.gizmodo.com.au/2008/08/ci...f_humor-2.html

[santaclaus]

Now I am a bit confused. Did this guy from Circuit City think that ad was inapporpriate because Mad Magazine was making fun of Circuit City? I would think that if there was an ad making fun of Blacks or Gays in an inappropriate way using a parody of Circuit City, they would not apologize. Can someone please explain this one to me, because I need to know who to attack next!!

[darkmarkshark]

You might not care, but the people with epilepsy who will end up being called crazy because of you will, so at the very least you should try to significantly minimize any crazy association with any publicity you engage in. We have a hard enough time as it is, without people promoting the idea that having epilepsy
equals craziness. People who care about those with epilepsy care about the image they project about epilepsy


If you truly are willing to soil the image of santa, and your even suggesting that you might here indicates to me that you are, then there is nothing that I won't do to stop you from using santa for anything to do with epilepsy. Whose to say you won't be talking about epilepsy today, and using that same character and voice to advertise a strip club next month? Thats the last thing the image of epilepsy and people with epilepy need

[santaclaus]

Darkmark,

Obviously you are talking about another post of mine, and if you want to argue, fine. I have done this Santa thing better than most, and that is a fact. I believe if done right, this will get a lot of publicity ( I really want to see if I can help raise one million dollars for charity). I will then be talking about seizure sticks, and how I want them removed immediately ( this stupid little product, and the fact I will be bringing it up will only help explain to the public not to put anything in our mouths during a seizure, something nobody has yet to accomplish) I will then bring up other difficulties that many people with epilepsy face, and allow others to speak for themselves. LOL!! And the best part is that nobody can do a thing to stop me!!!

I have been trying hard for the last four years, and my intentions are good. I have asked for help from everyone, asking them to use what i have done with Santa in a positive way. Nobody is willing to help, which leaves me to do it by myself. That is fine, but I will be damned if I am going to be attacked by anybody with epilepsy. You don't speak for everyone, and I will make it clear I represent the 1%er's. You know, we have a voice too.

By the way, what part of the image of Santa do you think I am going to soil. It is clear you don't know this character, so I am just curious.

My intention is not to fight with anyone, but please tell me how it will be deemed crazy having a guy dress like Santa for a couple of months (maybe even longer) and raise money for different charities ( don't worry, I have decided will never raise a dime for anything to do with epilepsy, mostly because of people like you)? How is this crazy?

[darkmarkshark]

I was quoting you, when I said soil the image of santa. Those are you words of what you would do, not mine

You wrote,

"If done right, my ideas could help out many people, and I am full aware of it. However, if some sleazy promoter wants to pay me to help promote strip clubs, I will do that too. It is a real shame because I can see all the good with this idea. Unfortunately, nobody has stepped up to help me, so now there is a great chance I will soil the image of Santa. LOL!! I don't even care at this point, but I do know that I could still get epilepsy some press. It might not be positive like I hoped, but it will be some press."

"That is fine, but I will be damned if I am going to be attacked by anybody with epilepsy. "

but yet you see nothing wrong by attacking people with epilepsy by promoting an image that associated craziness with epilepsy in the public's eye.

At this point, I don't care if I come across as being crazy, and if people associate epilepsy with being crazy because of me

Honestly. the more I read of your posts, the less I think you have any care or concern for those 1%ers with epilepsy. Someone with even a minor concern about epilepsy would have a major concern about the publicity surrounding it and would not want to actively work to portray a negative image that only serves to harm those 1%ers

[santaclaus]

But if you notice, I talk about wanting to do the right thing, and have asked for help. If it is a choice of me getting a laugh using the Santa image and surviving, I will get that laugh. I want to work with people ( I just got a great email today which convinces me this will be successful) and am committed to raising national awareness for epilepsy using the image of Santa. The way I see it is that everyone has a couple of options: The first is to figure out how we can make this work for all parties involved ( remember, I care about everyone, but am the voice of the 1%'ers) or you can talk with your friends, the people that can do something, and figure out how to get some national attention by Christmas time. Because if I see something being done effectively, there will be no need for me ( which is fine by me)

I really don't want to soil the image of Santa. I am trying to revolutionize the character, and feel I can do some good things. I have a meeting with a TV show this Saturday (yes, they know about the Santa and welcome it). I get to see if I can impress them enough, and then maybe i can make something happen.

Never get mad at me for trying, and never, ever, treat me like an enemy. I had to come up with this stuff on my own with no help from anyone, and I am proud of what I have accomplished. Someday, others will be too.

With much respect for all that have sacrificed for the sake of hte Cause,

Scott E Bananas

[darkmarkshark]

If you care about everyone, then you would care about those people harmed by your associating epilepsy with craziness. Those people who will be harmed by such things are those 1%ers you mentioned

If you tell me that you are going to attack me in the public's eye because I have epilepsy and you don't care whether you are promoting epilepsy in a good way or a bad way, have no concern about whether or not you are adding to the stigma that epiilepsy is craziness and not a real disability, then you are choosing to be an enemy to each and every person there is with epilepsy, and even worse, are showing you don't care that you are hurting such people


Any true voice of the 1%ers would care to make an effort to help them and would have that in the forethought at all times. You seem to be more a voice of the others -the ones who don't care what harm is done by false images or wrong associations in the public's eye. Otherwise you're greatest concern would be the image of epilepsy you are promoting

At this point, I don't care if I come across as being crazy, and if people associate epilepsy with being crazy because of me

Do you really expect us to consider you a voice that helps if you don't care if you come across is someone who harms us even more than we already are because of our condition?


You can't attack people and expect them to thank you for doing it

[santaclaus]

Hey man, if I said i was going to attack you in the public eye, I apologize. I am trying to do something pretty great, and I know I can't please everyone. Since I can't please everyone, should I just not bother trying?

Now, what happens if the publicity this campaign can generate will help stop the sale of seizures sticks, and inform the public that they shouldn't put things in our mouths during a seizure. Wouldn't that be successful? ( nobody else has been able to do it)

The people I care about are the ones that helped me get through a real difficult time in my life. For three years, I put everything I had into sites like these, and depended on those people to help. They did, and I survived. So, now I want to give back. Some of the public will call it crazy seeing a guy dressed like Santa. So what, especially when I am able to raise so much money for charity.

Now, it will be very easy to attack me, especially since I want to take on uncomfortable subjects. I love Aruba, and plan on announcing that the boycott of Aruba is officially over, and I want people to explain to me the difference between Imus' comment (nappy headed hos) and Al roker's comment about epilepsy two months later. LOL! I think this could be a lot of fun.

[Bernard]

Circuit City apologizes for yanking mad magazine.

Now I am a bit confused. Did this guy from Circuit City think that ad was inapporpriate because Mad Magazine was making fun of Circuit City?

Yep. Just like I thought...

After looking at the fake ad, I'm not sure there is anything to commend Circuit City on. The ad makes fun of them and if they even have this magazine for sale in their store (do they sell print magazines? I didn't think so), they likely pulled it because of that and not any concern for the way epilepsy was portrayed.

[drarvindr]

We are portrayed in the media as "pokemon"-watching mentally challenged kids who have a fit every time a police car passes us. Im sick and tired of it. Sure it's true someof us have photosensitive seizures , but people still don't care to give us a break. every popular movie has a 5 minute sequence with strobe variation lighting , a good example is batman 2 where batman beats up bad guys in strobe lighting. The olympic logo for the 2012 london games flashes so much it has caused many seizures. People want licence to amuse themselves at our expense and knowingly do nothing o even worse avoid making things better for us. In india , the marriage laws were defined as " marriage is legal as long as both parties are free from epilepsy.... and mentl illness at the time of marriage". it took a 12 year struggle to remove epilepsy from that list. I'm sick and tired of people pitying us or parodying us. It's time to be treated as an equal

[santaclaus]

We are portrayed in the media as "pokemon"-watching mentally challenged kids who have a fit every time a police car passes us. Im sick and tired of it. Sure it's true someof us have photosensitive seizures , but people still don't care to give us a break. every popular movie has a 5 minute sequence with strobe variation lighting , a good example is batman 2 where batman beats up bad guys in strobe lighting. The olympic logo for the 2012 london games flashes so much it has caused many seizures. People want licence to amuse themselves at our expense and knowingly do nothing o even worse avoid making things better for us. In india , the marriage laws were defined as " marriage is legal as long as both parties are free from epilepsy.... and mentl illness at the time of marriage". it took a 12 year struggle to remove epilepsy from that list. I'm sick and tired of people pitying us or parodying us. It's time to be treated as an equal

Epilepsy is a very uncomfortable subject for many people in this country, including people with this illness. We will never have solidarity amongst people with epilepsy, because too many of us want to many different things. Look, I applaud any organization that wants to raise money to find a cure for epilepsy, but at the same time, I think they are being silly, and missing the big picture. What we need is this country to understand what epilepsy is, and how it effects others. Once we do a better job in this regard, then it might be easier for many of us. This could only take a year or two, then we can focus on finding some cure.

But, the people that are in charge blew it big time these last two years, and I wonder why they are not held accountable. Two of the biggest stories that have hit the American media machine in years epilepsy had something to do with, and it would have been nice for one of these "experts" that are supposed to be looking out for our best interests to have used the opportunity.

I am of course talking about the Don Imus fiasco, and the Natalie Holloway case in Aruba. For those that don't know or remember, two months after Imus said his comment, and was fired, Al Roker made a really bad epilepsy joke, a comment that was a lot a heck of a lot worse than Imus's. How come nobody made a peep about this? ( And I don't want to hear they tried, because this had nothing to do about money. This had to do about making a point, but I guess they felt it wasn't a big deal)

Then, last February, we find out that there was a good chance that Natalie Holloway, the girl that went missing in Aruba that caused many news pundits to call for a boycott of ARuba, had a seizure, and that kid Joran did not know what to do about it. Am I the only one that sees the potential in this story to help us out?

If anyone watched Joran's "confession" aired the day after the Superbowl, there is that part where he describes Natalie having a seizure. His description proves he did not make it up, and he admitted that he was scared. Couldn't the people that are paid the big bucks to help us out use that as an opportunity to explain that if students and the public were properly educated about epilepsy and taught not to fear us explain how this girl's live might have been saved?

You see, I have a direct connection to that case, more so than anybody. It is not just the fact that I was Santa in Aruba last year, and feel that the boycott is silly at best. No, it is the fact that I met Joran last December and had some drinks with him. If I was to see him again, I was going to ask him to help me out and become a spokesperson for epilepsy awareness ( I figured the whole world listened to him, and that would have been a good thing) Little did I know at the time that a seizure would play a big part in him being famous, but I still intend to use that story.

But until the powers that be decides that awareness is more important than money for themselves, these people we expect to lead us and help us will never rock the boat. That is a shame, and I can't want to capsize the thing over.

[salright2baredneck]

If a person feels strongly about something, they should stand up and speak, and get their friends to speak with them. Waiting on others to stand up for you is a sure way to make sure that nothing ever gets done and nothing ever gets heard. If "the powers that be" don't see the importance of epilepsy awareness, then it's up to the "5,000 small voices" to make them see and make the world see along with them.

[santaclaus]

If a person feels strongly about something, they should stand up and speak, and get their friends to speak with them. Waiting on others to stand up for you is a sure way to make sure that nothing ever gets done and nothing ever gets heard. If "the powers that be" don't see the importance of epilepsy awareness, then it's up to the "5,000 small voices" to make them see and make the world see along with them.

Sal, what do you recommend a person do to be heard? I mean, I read all the time about different benefits, and walks and celebrities that are involved, but yet it seems like we still have all of these problems.

We have an illness that for many of us, sucks. It effects our thinking in a major way, and sometimes, it is tough to get out of that hole of despair. I always thought that there were people that were getting paid, by the government, to look out for our best interests. I learned I was wrong in that thinking, and that is why I hope to do something in the next year. Yes, Santa Claus will be around for one full year, on the beaches, talking about epilepsy awareness. Sure, it might make people associate epilepsy with being "crazy", but I will be having fun, and that is all that matters.

If one of the 4,999 voices want to get involved with me, let me know. I already have a huge benefit being planned in Greenbay the first week of December ( yes, I even have high profile people attending already), so my goal of having these benefits all year long is off to a good start. Now, since I will not be raising any money for epilepsy, it will give me a freedom to talk about epilepsy in a unique way. I can't wait, because this should be fun.

[alivenwell]

Santa is a male idol figure. The elves under him are little men. The only female figures in his general story are his wife (who's left alone a lot) and maybe one of the deer? How do you intend to allow inclusion of women in your plan? I may be wrong here, but it feels like you're going out on a limb alone dressed as a male idol.