April 27, 2008

Epileptic Identity: I Am Crip-eleptic, Are You?

Coming out as a person with E. has it's problems... In the first place, E. is invisible-in the second place, E. has been so highly stigmatized for so many centuries that coming out can present real problems for those of us to choose to do so. Finally, self-identification as "disabled" is often ignored or suspected by others, even from within the "disability community" to which many of us want to belong. 

But, there is something else: when one changes doctors, there seems to be an urge on the part of the new doctor, to try to prove a misdiagnosis by any former doctors---in other words, the new doctor will actively attempt to "discover" that one is not "really" epileptic!!! This is a problem.

It is also a problem when doctors want to make us "prove" that we suffer E., and here is an example of what I mean, from a friend, Kay, at Epilepsy-L:
Back in the day I had a doctor who would not give me a Rx for my seizure control medication.   said I had to prove I needed it.  Hello.  I went maybe two or three months with no problem and then one night had a nocturnal grandmal.  Went to the doctor and opened my mouth displaying all the bite marks in the tongue and cheek and asked him could I please have my Rx now??   He said yes but he had to turn it in to the DMV.  I politely told him my seizure was due to his neglect and refusal to give me my Rx and if he saw fit to turn it in to the DMV then be prepared to hire a driver for me while I could not drive.   He decided giving me my Rx was all he needed to do.  I told him I thought so.  Yes you see doctors who talk like that but sign a release and tell him to get copies of the old tests and if they are too old then they can be repeated but if new enough it would not be necessary.   If you are talking about blood levels I remember being tested every month for the first year I was on my medications.  I got monthly blood tests.   Kept me controlled after they got everything regulated perfectly for the next 18 years.

I have had this happen to me, when I was a teen. It is a kind of abuse that is stunning and one you feel no one would believe, even if you told them about it!!!

 I have formed my entire identity around the knowledge and experience of E., warts and all. The urge to re-diagnose me is destabilizing and a kind of threat to the integrity of my life's experience. To alter my reality by attempting to re-classify my status can be unnerving. 

So, does this mean I want to be epileptic? Does it mean I have something to hide? Am I afraid to lose my claim to being disabled? 

In a sense that is most personal to me, the answers to each of these questions is Yes. Yes, I want to be epileptic, yes, I have something to hide in that I want to retain the integrity of my experiences, as I know them, and yes, I am afraid to lose my claim of disability, because to do so would mean a massive readjustment to every part of my life, and I feel reluctant to want to engage that process! 

Additionally, I fear the notion that if I were re-diagnosed and E. were ruled out, that I would have to live with the notion that I had been lied to and that others might think the lie was my own... trust issues again.

I have a new word for what I am: crip--eleptic. Sort of like crip--elicious, I guess. 

But, it is important to realize that the disability community share a common thread with the abled community: a distinction and established hierarchy between those considered disabled and those whose conditions are consequential of some "personal tragedy". It seems that rather than being considered neurodiverse, we persons with E. are considered victims of "personal tragedy". How is that possible?

Perhaps it is owing to the fact that there are few of us individuals who come out publicly as persons with E. We are not always identified as disabled because we still want to pass as normal, whenever we can. Yet, we aren't really able to pass convincingly in all situations. Driving is one of those areas, to be certain.

Tell someone you don't drive or can't drive without revealing your E.---the first thought that creeps into that person's mind is that you never learned to drive. The next thought is that you don't own a car. No one ever thinks there is any other reason for not driving, particularly in California, where I live. In my state, it is simply abnormal not to drive or own a car!

I have only been out of the closet personally since about 2000. It has changed my life and freed my mind, and it allows me to reach out in ways never possible before. I have a new sense of myself and of others. My advice is to announce yourself whenever possible, with pride.

The truth is, the only way we will ever be able to change the ways folks see us, portray us, is to speak out and defend ourselves.

In the dim recesses of my past, I can recall a time when folks with cancer never mentioned that they had this disease. To do so would invite repercussions---loss of employment, estrangement from friends, and more. But today, most of us are aware of cancer, know folks with it, and have lost most of our prejudices against this disease. If cancer victims had not spoken up, progress against this disease would have been slowed tremendously and the social acceptance of persons with cancer might have led them into the isolation familiar to cripeleptics. 

Speaking up for one's self has many benefits: it allows you to define the rules of the game, socially. Anytime one can do that, one has a much better chance for success! 

Identity and E. are sometimes two seemingly opposing ideas. For one to want to be identified as crip--eleptic, one must learn to be unafraid of the opinions of others. Once this takes place, one can stand up and be a whole person, keeping nothing hidden.


Cheryl said...

"yes, I have something to hide in that I want to retain the integrity of my experiences, as I know them, and yes, I am afraid to lose my claim of disability, because to do so would mean a massive readjustment to every part of my life, and I feel reluctant to want to engage that process!"

I had a friend once (also has CP) who told me she would trade in her CP in a nano-second and I was crazy because I never would.

I couldn't have explained it better myself. I wish more people (both crip & AB) would get it.

Diane J Standiford said...

Right on. I embrace my MS and the disability it has brought to me.