To understand how far we still have to go with Epilepsy Awareness, try this simple experiment: Go to your local public library and ask the librarian to help you find the books on epilepsy.
These are the books I found when I did that. And my local library is a very excellent library in a major metropolitan area, a library whose innovative programs are among the best in the country.
But still, what I found disappointed. Immensely.The books pulled forward on the shelf are the books about epilepsy. There were 7 of them.
Just 7 books about epilepsy.
This, despite the fact that 1 in 26 people in the US will develop epilepsy sometime in their lifetime. And 1 in 10 will experience a seizure. Only 7 books, despite the fact that an estimated 3 million in the US have epilepsy right now.
And while I stood there in the library stacks, trying to wrap my head around why there were so few books on epilepsy, and why the majority of the ones that were there were simply dry rehashings of information readily available on the internet, I glanced to the right at the next shelf--and the word "Autism" caught my eye.
Now the number of people in the US with autism is roughly equivalent or maybe slightly larger (if you count everyone on the spectrum) as the number of people in the US with epilepsy.
And so I decided to see how many books there were on autism--to see if the numbers were roughly comparable. They weren't
In fact, the difference between number of books about epilepsy and the number of books about autism was huge. There were about 10 times as many books about autism as there were books about epilepsy.
The autism books spilled from one shelf to the next to the next to the next. I counted 75 books on autism.
And those 75 books included every kind of book you could imagine. Moving narratives by parents of kids with autism. Memoirs by adults with autism. Books that looked at autism from an amazing variety of issues and angles. Thoughtful books. Speculative books. Alternative approach books. How-to books, Self-help books. Books about negotiating every aspect of and developmental stage of the experience of living with and living well with autism. Books about coming to terms with life with autism. Books about the accomplishments of those with autism. Books by doctors. Books by psychologists. By educational professionals. Books by everyday people. Recent books. Excellent books. Beautifully written books. Best-selling books. And later, when I walked back out to the front of the library where new books are displayed there were an additional two new autism titles there. (Those two books drove the total to 77 books.) A veritable cornucopia of books.
And this is good--no, it's great!--because the number of books that you find in the library about a condition is a measure of just how developed the understanding of that condition is within society. It's also a measure of just how accepting a society is of that condition. And just how committed a society is to helping individuals with that condition integrate into and fully participate in society. I am thrilled for the autism community. I really am. That there are so many books about autism in the library is doubtless a measure of just how far society has come in regard to autism awareness. Because I'm sure that had you walked into a similar library in 1970 asking for books about autism that you'd have found very few if any books about autism. Autism Awareness may not yet have achieved all its goals; but it is well on its way in our society.
And now I--as the parent of a child with epilepsy--have to admit that I am jealous. When it comes to dealing with a difficult condition like epilepsy (as with autism), you don't want to walk alone. You want to have many perspectives on the experience. You want to read narratives of others' lives. You want to benefit from the experiences of those who have walked the path before you. Books convey the thoughts, experiences, and valuable input of those who have gone before you. Books keep you from being alone. They let you learn from the best and the brightest among you. They give you a range of experiences. A normative context for your own experience. Books give you a framework with which to understand your own experiences and struggles.
Books also both educate society about a condition and by their numbers, books reflect the state of understanding about a condition in that society. I can almost guarantee that, before the revolution in Autism Awareness that took place beginning the 1970's and that has been strengthening steadily since then, the number of books on Autism were very few--comparable to the number about Epilepsy today. As Awareness grows in a society, publishers begin being willing to print books about a topic. Mass media begins to be willing to tell the stories of those with that condition. And so begins an upward spiral of Awareness. As the stigma lessens and understanding grows through education and captivating narratives, more people with the condition are willing to speak up, speak out, and tell their stories. And then a flurry of intellectual activity takes place. People begin to think more about life with that condition, and they begin to share those thoughts. These shared thoughts and experience, in turn cycle back to improve lives. And those improved lives net more experiences and thoughts, which in turn improve lives. And before you know it, a whole society begins to think differently and has opened up to a group to make their lives better, to erase stigma, and to clamor to push research and treatment forward.
Autism Awareness has succeeded and is succeeding.
Epilepsy Awareness, not so much. It's not succeeding.
All you have to do is look at the number and quality of Epilepsy books in the non-fiction section of your library to see that. When I asked our non-fiction librarian about buying more books about Epilepsy, she was very kind. She said she'd be glad to do so. She says she's tried to look for more books about epilepsy, but that there simply don't seem to be any books available that she could find. Books about epilepsy are few and far between. She kindly offered to buy any that I could find.
No one is telling his or her story about living with Epilepsy. Or at least if they are, the publishers aren't publishing those stories. Publishers don't publish what they think people don't want to buy. What people don't want to read about. What there is no market for. And where there are no simple narratives that capture the imagination, there can also be no intellectual musings on living with that condition--no flowering of thought about life with epilepsy.
And so the essential question becomes, why are people willing to buy and read about autism, but are not willing to buy and read about epilepsy?
Some possible answers.... Lack of basic Epilepsy Awareness. Lack of positive narratives in the mass media about epilepsy. Lack of societal education about epilepsy. Continuing stigma around epilepsy. Continuing fear of epilepsy. The continuing failure in our society of a successful Epilepsy Awareness campaign.
Yes, we've made SOME progress. We're no longer locking those with epilepsy away in institutions. Yes, we're no longer enforcing laws prohibiting those with epilepsy from marrying. Treating them like lepers or worse. We're no longer presuming them to be demon possessed. But we are barely beyond that. Epilepsy continues to be hidden away. Those with epilepsy continue to be silent, afraid to identify themselves for fear of reprisal, discrimination, and stigmatizing. And why is this? Because Epilepsy Awareness is largely an unsuccessful movement that has never gotten properly off the ground except in the most minimal of minimal ways.
All this is pretty depressing. And all this lack of Epilepsy Awareness and all that follows from that--the lack of available narratives, the lack of thoughtful books, and the lack of understanding in our society and all that follows from that--makes living life with epilepsy much harder. People in our society are still afraid of epilepsy. Epilepsy is still stigmatized. It's still misunderstood. Society is woefully ignorant about epilepsy. And this ignorance, misunderstanding, fear, and stigma affects real people's lives in innumerable ways every single day. When Awesome was on her online community connected with Animal Jam and mentioned having a seizure that morning (as an explanation as to why she was so "off') the response from other kids were, "Oh my goodness! Are you still alive?" and other such nonsense. And things aren't much better with adults, even with medical professionals. It's disturbing when you have to reassure a medical professional that if your child has a seizure that everything will be all right--that it's not the end of the world. We could tell many discouraging stories as could most people with epilepsy or parents of children with epilepsy.
One has to ask the question: Why? Why are things this way?
What have those promoting Epilepsy Awareness failed to do that even now--in an age that prides itself on inclusiveness and erasing the stigma connected with almost condition or disease possible--Epilepsy Awareness has been and continues to be so damn unsuccessful?
We need a new model. It's time for a new generation to take up the banner of Epilepsy Awareness and start a revolution of the sort that the Autism Community affected.
One day I want to walk into the library and find several shelves of books about epilepsy. When that happens, I'll know Epilepsy Awareness is finally starting to get somewhere. And that things have finally started to change enough to make a real difference in the lives of people with epilepsy.
These are the books I found when I did that. And my local library is a very excellent library in a major metropolitan area, a library whose innovative programs are among the best in the country.
Just 7 books about epilepsy.
This, despite the fact that 1 in 26 people in the US will develop epilepsy sometime in their lifetime. And 1 in 10 will experience a seizure. Only 7 books, despite the fact that an estimated 3 million in the US have epilepsy right now.
And while I stood there in the library stacks, trying to wrap my head around why there were so few books on epilepsy, and why the majority of the ones that were there were simply dry rehashings of information readily available on the internet, I glanced to the right at the next shelf--and the word "Autism" caught my eye.
Now the number of people in the US with autism is roughly equivalent or maybe slightly larger (if you count everyone on the spectrum) as the number of people in the US with epilepsy.
And so I decided to see how many books there were on autism--to see if the numbers were roughly comparable. They weren'tIn fact, the difference between number of books about epilepsy and the number of books about autism was huge. There were about 10 times as many books about autism as there were books about epilepsy.
The autism books spilled from one shelf to the next to the next to the next. I counted 75 books on autism.
75 books about autism!
And those 75 books included every kind of book you could imagine. Moving narratives by parents of kids with autism. Memoirs by adults with autism. Books that looked at autism from an amazing variety of issues and angles. Thoughtful books. Speculative books. Alternative approach books. How-to books, Self-help books. Books about negotiating every aspect of and developmental stage of the experience of living with and living well with autism. Books about coming to terms with life with autism. Books about the accomplishments of those with autism. Books by doctors. Books by psychologists. By educational professionals. Books by everyday people. Recent books. Excellent books. Beautifully written books. Best-selling books. And later, when I walked back out to the front of the library where new books are displayed there were an additional two new autism titles there. (Those two books drove the total to 77 books.) A veritable cornucopia of books. 
And this is good--no, it's great!--because the number of books that you find in the library about a condition is a measure of just how developed the understanding of that condition is within society. It's also a measure of just how accepting a society is of that condition. And just how committed a society is to helping individuals with that condition integrate into and fully participate in society. I am thrilled for the autism community. I really am. That there are so many books about autism in the library is doubtless a measure of just how far society has come in regard to autism awareness. Because I'm sure that had you walked into a similar library in 1970 asking for books about autism that you'd have found very few if any books about autism. Autism Awareness may not yet have achieved all its goals; but it is well on its way in our society. And now I--as the parent of a child with epilepsy--have to admit that I am jealous. When it comes to dealing with a difficult condition like epilepsy (as with autism), you don't want to walk alone. You want to have many perspectives on the experience. You want to read narratives of others' lives. You want to benefit from the experiences of those who have walked the path before you. Books convey the thoughts, experiences, and valuable input of those who have gone before you. Books keep you from being alone. They let you learn from the best and the brightest among you. They give you a range of experiences. A normative context for your own experience. Books give you a framework with which to understand your own experiences and struggles.
Books also both educate society about a condition and by their numbers, books reflect the state of understanding about a condition in that society. I can almost guarantee that, before the revolution in Autism Awareness that took place beginning the 1970's and that has been strengthening steadily since then, the number of books on Autism were very few--comparable to the number about Epilepsy today. As Awareness grows in a society, publishers begin being willing to print books about a topic. Mass media begins to be willing to tell the stories of those with that condition. And so begins an upward spiral of Awareness. As the stigma lessens and understanding grows through education and captivating narratives, more people with the condition are willing to speak up, speak out, and tell their stories. And then a flurry of intellectual activity takes place. People begin to think more about life with that condition, and they begin to share those thoughts. These shared thoughts and experience, in turn cycle back to improve lives. And those improved lives net more experiences and thoughts, which in turn improve lives. And before you know it, a whole society begins to think differently and has opened up to a group to make their lives better, to erase stigma, and to clamor to push research and treatment forward.
Autism Awareness has succeeded and is succeeding.
Epilepsy Awareness, not so much. It's not succeeding.
All you have to do is look at the number and quality of Epilepsy books in the non-fiction section of your library to see that. When I asked our non-fiction librarian about buying more books about Epilepsy, she was very kind. She said she'd be glad to do so. She says she's tried to look for more books about epilepsy, but that there simply don't seem to be any books available that she could find. Books about epilepsy are few and far between. She kindly offered to buy any that I could find.
No one is telling his or her story about living with Epilepsy. Or at least if they are, the publishers aren't publishing those stories. Publishers don't publish what they think people don't want to buy. What people don't want to read about. What there is no market for. And where there are no simple narratives that capture the imagination, there can also be no intellectual musings on living with that condition--no flowering of thought about life with epilepsy.
And so the essential question becomes, why are people willing to buy and read about autism, but are not willing to buy and read about epilepsy?
Some possible answers.... Lack of basic Epilepsy Awareness. Lack of positive narratives in the mass media about epilepsy. Lack of societal education about epilepsy. Continuing stigma around epilepsy. Continuing fear of epilepsy. The continuing failure in our society of a successful Epilepsy Awareness campaign.
Yes, we've made SOME progress. We're no longer locking those with epilepsy away in institutions. Yes, we're no longer enforcing laws prohibiting those with epilepsy from marrying. Treating them like lepers or worse. We're no longer presuming them to be demon possessed. But we are barely beyond that. Epilepsy continues to be hidden away. Those with epilepsy continue to be silent, afraid to identify themselves for fear of reprisal, discrimination, and stigmatizing. And why is this? Because Epilepsy Awareness is largely an unsuccessful movement that has never gotten properly off the ground except in the most minimal of minimal ways.
All this is pretty depressing. And all this lack of Epilepsy Awareness and all that follows from that--the lack of available narratives, the lack of thoughtful books, and the lack of understanding in our society and all that follows from that--makes living life with epilepsy much harder. People in our society are still afraid of epilepsy. Epilepsy is still stigmatized. It's still misunderstood. Society is woefully ignorant about epilepsy. And this ignorance, misunderstanding, fear, and stigma affects real people's lives in innumerable ways every single day. When Awesome was on her online community connected with Animal Jam and mentioned having a seizure that morning (as an explanation as to why she was so "off') the response from other kids were, "Oh my goodness! Are you still alive?" and other such nonsense. And things aren't much better with adults, even with medical professionals. It's disturbing when you have to reassure a medical professional that if your child has a seizure that everything will be all right--that it's not the end of the world. We could tell many discouraging stories as could most people with epilepsy or parents of children with epilepsy.
One has to ask the question: Why? Why are things this way?
What have those promoting Epilepsy Awareness failed to do that even now--in an age that prides itself on inclusiveness and erasing the stigma connected with almost condition or disease possible--Epilepsy Awareness has been and continues to be so damn unsuccessful?
We need a new model. It's time for a new generation to take up the banner of Epilepsy Awareness and start a revolution of the sort that the Autism Community affected.
One day I want to walk into the library and find several shelves of books about epilepsy. When that happens, I'll know Epilepsy Awareness is finally starting to get somewhere. And that things have finally started to change enough to make a real difference in the lives of people with epilepsy.
It would be interesting to know if your library reflects what's available out there or not. Autism IS a very hot topic. I'd guess epilepsy not so much. But one person's donations can affect the local library greatly for good. We've dealt with autism since my dd was born. We only encountered epilepsy for a brief season. I've handed off a number of books after reading them because we were finished with them, or they weren't my favorite one or two. I've also intentionally donated too. Search to see what's written--maybe authoring your own book will result! Meanwhile find out your library's policy. Maybe a strategic gift or two will enhance the collection?
ReplyDeleteThanks for your comment, Lisa Fisher. That autism is a hot topic is half the point. It's a hot topic because Autism Awareness has succeeded. Epilepsy is not a hot topic because Epilepsy Awareness has NOT succeeded. Despite the fact that comparable numbers of people are affected by each of these conditions.
ReplyDeleteAs books to be found in the library, our librarian is quite willing to buy whatever books are out there. The problem is that there are VERY FEW books out there to buy about epilepsy. Why? Because epilepsy is NOT a hot topic. And because it's not a hot topic, publishers aren't willing to publish books about epilepsy because they believe those books won't sell. It's not just that people aren't writing the books, it's that society isn't interested in them. Again, because of a failure of Epilepsy Awareness.
No amount of my donating money to the library will increase the number of books our society does or doesn't publish about Epilepsy. You can't buy books that don't exist. Only Epilepsy Awareness succeeding will increase the number of books about epilepsy that are published and start to turn things around.