Friday, December 28, 2012

A Day In the Life of....

First let me say, I don't speak for all people with Agenesis Corpus Callosum, at least in the sense of thinking everyone's experience is like mine.  Like Autism Spectrum Disorder, ACC has a huge spectrum of effects, from mild to severely disabling.  

I belong to several groups online of ACC adults (and parents of ACC children) and I have noticed a trend that makes me very sad.  Many adults, like myself continue to socially isolate themselves, because we see how our relationships and friendships, well, they always start out well, then people see us as we are, who we are, and freak, mistreat, condemn, judge.  To be certain, this isn't "all" people (I agree with psychology that the use of "universals", i.e., "all/always/everytime" etc...is a slippery slope) yet I have met enough of "me/us" to know it is generally true.

I won't mention names of people I spoke to about this, that would be betraying trust and privacy...but I will shout out to them this:  It really does not have to be this way...I still largely control who is in my life, I have to, yet I've been able to find people that love me, in spite of, and because of my "strangeness."  I generally (when appropriate) try to "pre-educate" people, and let them know "what they are about to see/experience if they really want to hang around and be my friends/family."  While this doesn't always work, it has opened up a new world for me.

I became expert at burning bridges early on.  My thinking (like many of us) was "that person/family member is going to hurt me (more) so I might as well do what I can to end this in advance before it happened.  I see many of us do the same.  In fact, after my (thank God) failed suicide when I was in my 20s, I am grateful to have listened to my doctors at the time.  You see, I had just been revived, and a "family member" (will not mention him by name, I don't want to add cruelty to my repertoire), literally could be heard on the phone saying "he's just a liar, he's crazy, he wants attention, we want nothing to do with him" (I have a recording of this conversation provided by the hospital, so even with my confabulation issue, I know the truth of this.)

The best thing my doctor said at the time, was to "stay the hell away from "____" and to not keep in touch.  SO much pain involved in this, but I'm glad I did, had I not, I likely would be dead today.

Thing IS, we should not have to go through this.  I have another relative, who's own father treats him exactly the same, saying cruel things such as "you are just like your "_____" (referring to me), you are a psychopathic liar" (and worse things.)  

Most Americans are utterly ignorant of what a developmental disability is, verses a "mental illness."  A DD person can have mental illness sometimes, but they are not in any way the same thing.  Even so,  people are terrified, that "if that can happen to them, it can happen to me" realizing that "who they are" is a far more tenuous balance than they'd like to admit.   So, they bury these things deep, and begin to judge "me" vs. "them."

It is time for the United States to pick up the ball that Ronald Reagan threw into America's gutters.  It is OUR children, brothers, sisters, mothers, fathers, aunts, uncles, cousins, and veterans of "our" wars that he threw into the streets when he systematically closed more than half of the US's mental hospitals and cutting care...and people wonder why the hell we have Columbine, have Colorado, CT and the like?

I turned 50 this year.  With many people 50 is a great turning point.  For me it was astounding.  It is as if all of the sudden "I know who I am, and I am not going to be your doormat."  I have let people trample all over me for decades, and I will not/cannot do this anymore.  Before I moved back to SoCal, I literally spent more than 3 years never leaving my home.  No, I wasn't "agoraphobic" not in the clinical sense, but the fear, pain, rejection and cruelty was more than I could bare. I had groceries delivered, only walked my dog in the park (literally next to my home) and otherwise NEVER left home.

I couldn't/can't do this anymore.  I want to LIVE...and I REFUSE to allow people's ignorance and discomfort to kick me down to the curb any more.  Having said this, I still very closely control who is "in my life."  I have a small handful of peoples, two of which are more "sister" to me, than I had ever been "brother" to my family. They know that, not that I "might" "go off", they know I will eventually be inconsistent/incongruent/ seemingly disconnected from "what is 'really' going on" (in there eyes), and yet, they have/will continue to love me, and be there with/for me despite this.

I do not discount that, people in my past, who didn't know about my congenital brain defects dreamed up all kind of shit about me, because frankly, they simply could not understand why I was the way I was...I GET IT, I really do...but...grow the fuck up (SERIOUSLY!)  Even in the presence of medical diagnoses, MRIs showing both my brain damage at birth as well as strokes I had, they think likely in the birth canal (I was born also with a prolapsed cord around my neck), some of these "individuals" would still call me a liar to my face....and I have no time whatsoever for you in my life.  

I'm also not discounting how horrible I have treated those people in my past...yet G0d@mnit, there is a valid reason.  

If anything, all of this has only kindled the fire within me even moreso.  I will continue to fight for equality, justice, understanding...will continue to fight for the rights of the developmentally, neurologically, and mentally disabled.  We are coming OUT of the shadows that America's ignorance has shoved us in and abandoned us to.  

With the awakening of people in America, to more injustices, such as marriage equality, women's rights, and more I add the rights/privileges/lives of all disabled people in America.  We are taking your shame and handing it back to you. We want nothing of it in our lives.  Not only have/do you cause us suffering, but you haven't a clue (yet) the suffering you have brought on yourselves.

Times are a'changin' and I am so very proud to be a part of it.  I am making a difference (and you can too) in the lives of others.  I am watching parents of children born with my brain defect, well, I am watching them unconditionally love and hold tightly to their children, not rejecting them for who they are.  I am watching them become educated, informed, empowered.

This is not to say that my own family didn't do what they could.  They certainly tried, but not only did they not have my accurate diagnoses (they couldn't have in my day) but were bogged down by the same type of ignorance as most of America...It wasn't my parents "fault" in any way shape or form (on this issue LOL), they were victims too.  

Changes for us started with the ADA, American's with Disabilities Act, and continue even today...I foresee a day of great change, very, very soon, and in the near future.  I pray that it is so.

With all my love,
Gurudasa/Joseph






1 comment:

Dredd said...

Keep up the good work!

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Thank you for contributing to my blog! :D
~gurudasa
~joseph