November 25, 2008

What to Ask for this Christmas?

I don't have my shopping done. I don't even know for certain who I am giving gifts to this year... But, I have a suggestion or two some of us might want to ask Santa to bring us.

A few years back, the BBC created a wonderful mini-series about the life of an unheralded British prince. His secret life was made that way because of his epilepsy. It is a truly touching story, beautifully shot in Britain, and worth adding to any DVD collection. A good gift for movie buffs, certainly.

Then, for those of us wanting to help others for whom we are concerned, let me suggest medical alert bracelets, silicone bracelets, safety  and these are wonderfully temporary skin tats for children and adults that provide needed emergency info without wearing a bracelet or necklace. 

So, you can use Santa's favorite method of obtaining further information on these products by simply looking in either Google or Yahoo. All of these things can be located on the web.

Now, I have to get ready for Thanksgiving dinner. 

More about Christmas, later.

November 24, 2008

Protecting "Normal"...

Politically correct (PC) speech is interesting to examine. Like I suggested in my first posting, I prefer not to use it about myself. In my opinion, PC speech is irrelevant to my own experience as an epileptic.

A couple of nights ago I attended an Epilepsy Month panel and at the end of the panel discussion there was time for a question and answer period. A young man stood up and began to speak, but the first few words out of his mouth were “I am an epileptic” so one of the panelists stopped him in front of everyone to chide him about his use of the word “epileptic”.

I wasn’t very happy about it. So, it made me think…

What are we really doing with PC language, anyway?  Doesn’t our word-choice reflect on our experience as a disabled person? Don’t we have a right to choose how we will self-identify, without fear of recrimination from anyone? I think so.

A blogger friend of mine insists on employing “language amnesty” toward one another of us involved in a cross-disability dialogue. I think “language amnesty” is a good policy across the board. I think before we decide that an individual’s word-choice for self-identification is wrong or harsh or unacceptable, we need to pause and allow the person the room to express his or her own experience via his term for himself.

I know I spend a lot of time on language issues, but to me, if we cannot effectively communicate, then we have lost all power and all hope of being able to defend our lives as disabled folk. 

November 20, 2008

Lighting the Way???

On February 20, 2007, Australia announced that it would phase out the sale of the incandescent light bulbs (that we use nowadays) by 2010 and replace them with CFL (compact fluorescent light) bulbs.

Two months after Australia's announcement, the Canadian government announced that it too would phase out sales of incandescents by 2012.

On December 19, 2007, USA also announced that it will phase out incandescent bulbs by 2014.

In fact, President Bush signed an energy bill that will make the production or sale of the incandescent bulbs illegal after the phase-out period, which means people will be forced to buy the CFLs whether they like it or not.

The European Union announced in March 2007 that it plans to cut carbon emissions by 20 percent by 2020. Part of this cut will be achieved by replacing incandescent bulbs with compact fluorescents. Over the next 10 years, China, which makes 70 percent of the world's light bulbs, has agreed to phase out incandescent bulbs in favor of CFLs  (

Sure. All of us want to participate to save the planet, to go green, to reduce our footprints on earth. Still,
I am not alone when I suggest that this is a bad solution for many of us. Gee---I have trouble sitting in a 
classroom with fluorescent lighting, so I am really gonna have troubles with living 24/7 with it, compact or not.

It may be necessary to contact Health and Human Services and protest against a kind of forced situation that 
may aggravate our conditions as well as the conditions of other disabled.

I know throwing over incandescent light bulbs seems like a good idea, but one simply can't unilaterally decide 
without taking into consideration the needs of others who must live among the 300,000,000 
that populate our country. 

Remember, one in fifty of us has epilepsy and our population alone will be poorly served by this decision. 
But there are others who suffer from exposure to this kind of lighting, and so to force it on us is simply cruel.
A better strategy might be to rethink how we will proceed, to see if another way exists that might be healthier 
for all of us.

November 12, 2008

Who Will Help Represent US?

Yeah, Clinton's correct. There is also no urgency in funding even though people die from Epilepsy more frequently than they do from AIDS each year in the United States. 

One of the things I know we need is a human face. If we are going to engender support for Epilepsy research and awareness, we will need a very public person to stand out and up on our behalf. 

I think we should collectively make a list of persons we think might make excellent spokespersons for us at a national level.  Someone with E. would be best, I think, but I could be wrong...

1.  Bill Clinton
2.  Neil Young
3.  George Clooney
4.  Senator John McCain
5.  Greg Grunberg
6.  Oprah Winfrey

OK---I have run dry of ideas, but if you can suggest some others, I will add them in. So far on the list, the only person with E. is Neil Young. 

November 6, 2008

Epilepsy Awareness Month!!!

It's that time of year again when we should all consider making others aware of Epilepsy. 

Here is a little ammunition to get the conversation rolling:

1.  Epilepsy outstrips AIDS in annual deaths
2.  Some 181,000 persons will develop Epilepsy each year.
3.  The Department of the Army estimates that as many as 50% of returning injured Iraq and Afghan vets will develop E. within the next 15 years.
4.  The same percentages apply to veterans from the VietNam war.
5.  An epileptic "seizure" is not necessarily a "convulsion".
6. There are an estimated 22 different seizure types.
7. 1 in 50 people already have Epilepsy.

The most important thing an individual with E. can do for himself is to stand up and identify as a person with E.
Stigma, or a feeling of disgrace or shame can be eliminated if we stand up and speak out. Stigma is the most dangerous aspect to life with Epilepsy.