May 30, 2008

Will "Ugly Laws" Make a Comeback???

(CBS) A Port St. Lucie, Fla., mother is outraged and considering legal action after her son's kindergarten teacher led his classmates to vote him out of class. 

Melissa Barton says Morningside Elementary teacher Wendy Portillo had her son's classmates say what they didn't like about 5-year-old Alex. She says the teacher then had the students vote, and voted Alex, who is being evaluated for Asperger's syndrome -- an autism spectrum disorder -- out of the class by a 14-2 margin.                                 
From the time of the Civil War until 1974, the United States had in place city ordinances, "ugly laws," that allowed the arrest and punishment of individuals considered physically unattractive. 

In fact, what was meant by "ugly" was disfigurement, disability, and disease. The main, stated purpose for such laws was to relieve the public from the sight of repugnant members of society. The real offenses for which these disfigured, disabled, and diseased individuals were arrested were (a) poverty and (b) begging. In a circular way, repellent features (missing limbs, sores, etc.) were often the reason for poverty and begging: such members of society could not gain employment and thus resorted to begging. 

Public protest and unenforceability were the reasons that the ordinances finally passed into oblivion. Today, however, similar patterns of employment denial and prejudgments about criminal status exist for the poor and disabled.

The desire to sanitize society, thus making socialization a pleasant, unchallenged act, is particularly hard on military veterans. After WWI, disfigured vets found returning to ordinary life difficult because once disfigured, they were never allowed to blend in again. After WWII, the same thing happened. Men and women whose features were newly augmented with prosthetics became resident sideshows in their communities. 

One wonders what the cost will be for the troops returning from Afghanistan and Iraq---the prosthetics are much improved since WWI & II, but society has gotten used to never having to look at someone else's hurts.

And what about the thousands of new epileptics returning home???  Will their presence signal an improvement in care for all of us? Or, will they simply be urged to go home and hide from society... because if they do not, will they,  like the Florida  kindergartner with Asperger's syndrome, find that they are voted out of their community for being "annoying"? 

May 28, 2008

Fight Back---Complain!!!

When we visit the doctor, we expect to be treated well and to be given professional attention. When this does not happen, most of us feel alienated. Since we need the help of doctors to maintain our condition, it is important for each of us to take responsibility when something goes wrong.

The best way to do this is to file a complaint with the medical board in the state the doctor practices. Here is a website that can give further information about this, what to expect and how to do it:

The next time I am asked to prove I need my meds, the next time I am abused for my condition, I will take action and file a complaint. If for no other reason that it may help to establish a pattern of abuse, so that the next person who sees the same fool might have a better chance of avoiding it.

Just thought you might like to know a way to get proactive...

May 22, 2008

The Persisting Stigma of E.

I want to take a running stab at an explanation for the persistant stigma associated with E...

There is a grand new book by Sadi Ranson-Polizzotti titled
The Bedside, Bathtub & Armchair Companion to Lewis Carroll --- however, while writing and researching the book, Sadi encountered stiff resistance from other Carroll scholars against the notion of Carroll's epilepsy. The resistance is wholly their own, because Carroll freely admitted to it in his diaries. He was diagnosed with it formally and learned to cope with it.

So why the resistance to it today???

According to David Rothman's review,

Epilepsy: The real origins of the creative bizarreness

Carroll, it turns out, suffered from epilepsy, and Sadi says that shaped his imagination and led to surrealistic passages in his works—and maybe even in part to the birth of surrealism itself, for Carroll was surrealistic before the word existed. Think of that next time you read, say, of Alice falling down a rabbit hole or shrinking to three inches or growing to nine feet.

In other words, rather than slapping all kinds of Freudian explanations and tags on Carroll, a biographer might do better to search The Reverent’s diaries for his unwitting descriptions of the disease. Sadi says her work is the first book not to gloss over the epilepsy. In Carroll’s days, epilepsy bore enough of a stigma to discourage doctors from making such a diagnosis despite the obvious signs in his diaries such as the headaches and particular kinds of hallucinations.

I have not read the book yet, but based on Sadi’s lively and literate writings published here, I’d recommend you consider buying it if you’re an Alice fan.

Sadi has mentioned the resistance by others when it comes to identification of Carroll as a person with E. A relative of his makes a similar remark about him, related to his photographic endeavors:

I have lived my life with this association and I have never known exactly how to react to people’s views on Dodgson. On the one hand is the whimsy and delight of the Alice stories. But to others, there is a darkness about Dodgson’s subject matter for his photography. As an aside, there is precious little discussion of his significant contribution to mathematics.

From my own research, Dodgson’s photographic techniques were groundbreaking and the appropriateness or otherwise of his subject matter is simply a matter of opinion.

For what it is worth, Alice Liddell’s family seemed to have an opinion that it was not appropriate and thus succeeded in planting an element of innuendo into the interpretation of Dodgson’s behaviour. This seems more a reflection on Victorian morality rather than anything else.

It is important to note that in Victorian times, E. was considered a blight on a person which cast into doubt the quality of the individual--- it made questionable the moral standards of the individual, to be certain. Lewis Carroll's moral reputation was perhaps darkened by the fact of his epilepsy, and it seems as if that stigmatic darkness has pursued him to the present day.

It is important to keep in mind that it was during Victorian times that the medical community believed epilepsy (or at least some forms of epilepsy) were caused by too much sexual stimulation and it was Dr. Issac Baker Brown, surgeon, who advocated and practiced both male and female circumcision as a mode of treatment for epileptics, to lessen seizures.

The connection between sexual practice and epilepsy was a strong one in Carroll's day.

However, it is important to note, just as Sadi Ranson-Politzzotti has done, that the epilepsy was a huge contributing element to Carroll's genius.

I heartily and sincerely second David Rothman's suggestion that you purchase this book!!! It will provide new insight to your own condition as well as to the author so many of us cherish.

For ordering information, go to the following link:
To read more about this from Sadi's own blog:

From Sadi's site, you can learn more about how to purchase a personalized copy for your home library, or as a gift!!!
And, just so you know, Sadi is a fellow TLE---let's support her good work and insight by purchasing her book!!!

May 1, 2008

To Bell the Cat...

Once upon a time, as the story goes, a group of mice became so frightened of a cat that all they could do was huddle together. They did not seek food, they did not go into the house for warmth. They huddled and began to complain: "The cat creeps up on us and attacks us and we never hear him coming!"  

One day, while they were all huddled together, one of the mice had an idea: "What we need to do is hang a bell around the cat's neck so that we can hear him coming!"  According to Aesop, the mice worked out how they would accomplish this feat and did so, solving their problems with the cat...

I submit that many of us are huddled together, still trying to figure out how to get the bell around the cat's neck! I know crip-eleptic mice are still huddled and still working out how to hear the cat coming before it attacks them.  

Fear of the cat makes each of us vulnerable to him. We have to stand up, and we have to make it clear that we refuse to be eaten just for living in the same world as the cat.

Crip-eleptics are very afraid of the cat. They have been for centuries and they know the cat can ruin lives. They have seen it happen. 

Each year, there are those who are arrested by police because their behavior after a seizure may be antagonistic or belligerent. Because police are poorly trained about persons with E., they assume the behavior is willful, and directed toward them, so they make the arrest. Once in the system, these folks become its victims and their lives are never the same afterward.

My own idea for belling the cat is to become vocal and well-informed about the social aspects of our histories. Then, having gained this power, we must stand before the cat and speak up for each other when things go awry. If we can get no immediate satisfaction, then we must resort to becoming even more public, using our talents as writers to criticize the cat in print... 

We must volunteer ourselves in an effort to bridge the chasm of understanding between the cat's world and our own. And, when injustices occur, we must be available to help any way we can.

So far, I have discovered that belling the cat is a gradual process. But once accomplished, it lifts a terrible burden and makes living better. 

Persons with epilepsy are not the only ones who worry about the cat. 

Many of us find that the cat creeps up on us unexpectedly at times. Together, we can as a complete community succeed, if we are joined in a single effort against the cat. And, we can leave no one out, because each of us may have something essential to contribute to the strategy for getting the bell around the cat's neck.