Did you know that the designation of November as National Epilepsy Awareness Month is 38 years old? I didn't. When I have mentioned that November is National Epilepsy Awareness Month to friends and strangers alike, they all say the same thing to me: "I didn't know that!"
Because they didn't know, they did not make donations, participate in multi-K runs, attend pancake breakfasts, or even wear the lavender ribbon that is supposed to designate such an awareness and support. I see yellow ribbons for the Support Our Troops effort, I see oceans of pink ribbons for Breast Cancer Awareness, so it isn't that people don't want to offer support for things they consider worthwhile.
The question I ask myself is: if the campaign to make the general public more aware of E. is a national effort, then why does it seem to be so impotent?
Our one, giant lobbying organization is funded and can aide us in our regional and local efforts at least one month of the year, can't they? Certainly, many of us have been made aware of Heart Disease, Good and Bad Cholesterol, High Blood Pressure, Alzheimer's; of HIV/AIDS, of Asthma, of Lyme's disease; of the dangers of the Hanta virus, Smoking, and even Prostate Cancer... so what about E.?
Why are both professionals and lay persons still so badly informed about a condition that affects millions of us daily?
Public consciousness raising could improve our lives greatly. If it were done correctly, a successful series of ads and activities could help release many of us from stigma, keep us employed, insured, in school, and raise many of us up in our local communities. So why are we still futzing with this, why aren't we becoming more successful at telling people about ourselves?
One big flaw in these campaigns seems to be that the programs designed to heighten an awareness of epilepsy are targeted towards persons who already have E.---trust me, these people are already aware of it.
It's only a suggestion that awareness programs be directed outward, toward the larger society, that is, if one wants the larger society to become cognizant of the condition and its details.
Maybe it's time to rethink placing our advocacy in the hands of a single organization.
Maybe they haven't done us any real good in 38 years...
I have been epileptic for 65 years now. I have lived in fear, shame and self-doubt. I have learned to push back to make room for a life, with some of the ordinary comforts and joys life can bring. Our lives are gifts. But we are responsible for living them. I promote speaking and writing about E. We can all make a difference so keep reading...
Saturday, November 10, 2007
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