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Posts Tagged ‘disabled’

journal page 080610 So much has been happening, and I’ve been happening to so much, as well!   Change and transition and uncertainty and obstacles/threats, and both anger and fear, triggered by the present, but often with fuel from the past, leaves me somedays feeling positively beaten about the head and neck!  But it passes.  That’s the cool thing, and also the not cool thing.  It’s cool, because I know that even in the throes of pain, confusion, anxiety, depression at times, not knowing what exactly to do/how to cope, I also know that I am experiencing this pain right NOW, and the time of suffering will pass, the fog will clear, the mood will lift, and I will emerge from those moments with something more than I had before—more insight, more relief, more control over the experience (not so much restrictive, as experiencing it intentionally, mindfully, as the process unfolds).  I am keenly aware, as I never have been before, of how I have been shaped by experiences that I didn’t even remember, that telling the story of what I learn along the way, including detailed scrutiny of processes at work, both passive and active/proactively, is itself a multitude of lessons.  It gives me insight into how my own thought processes work—very differently from most of the world, I might add, and why it’s always been so difficult for me to fully connect with others effectively. 

The image is of me, approximately in my 20’s, but connected to me is this elephant.  The elephant represents the fact, unbekownst to myself or my family, that I was, since birth, the “elephant-in-the-room” born autistic (Aspergers), with all the cognitive, functional, and medical potential that Aspies are shaped by, even before they are born.  And this little Aspie “elephant” spent the better part of the first two years of her life, being forcefed toxic pollutants while living next door to a coal burning power plant, years before the Clean Air Act even existed, and decades before they managed to effectively enforce restrictions on coal-fueled electricity.  The damage was already done to this autistic girl who already had a compromised immune system to begin with.

I was constantly sick, and had even been hospitalized once in 1963 with severe dehydration.  I got every virus that came my way, and, as my father later reported to a pediatric neurologist in 1971, “allergic to everything.” 

The third major developmental “insult” occurred when I fell from the upper floor fire landing of a local gymnasium, head first onto solid concrete. It was a very bad head injury, 3” skull fracture, intracranial hypertension and secondary brain injury, also referred to as “diffuse axonal injury.”  The secondary injury, caused by swelling and increased pressures on the brain, caused a lot of the connections between nerves to “shear” or tear apart, while at the same time the brain has trying to heal itself and keep me alive.  This went on for so long, that how it healed, and the rewiring to do it, took the hard wiring in my brain another huge step further away from “normal”.  From the outside, one could observe that the swelling and bruising finally went down, I did not die, and about 9 months after I came home, I was able to sit up in bed without head pressure problems. 

But there was not only no understanding whatsoever of Aspergers Syndrome back then, but also doctors had no idea what such an injury might do to a brain that survived such a fall.  No therapies or medications were administered, no tests for functional damage was done, and I, being only 5 years old at the time, had no idea that I had even less in common with neurotypical humans in how I would interact with my world going forward.  I had a strong sense that I was different from other children as early as 3 years old, but I had no idea why, nor any ability to understand the minds of others. 

Bridging the communication gap has been a lifelong struggle for me, both to understand and to be understood.   I want to be able to relate to other people, to connect with them in ways that are valuable and mutually beneficial.   It’s been agonizingly difficult, cumbersome, time consuming, and exhausting for all parties when I am trying to explain, to clarify my thoughts, feelings, overall perspective on a thing, yet know that I have failed, based on the reaction of those on the receiving end.  I fail for a number of reasons. I have gotten quite expert at being able to profile others, to analyze their behaviors, provided that I am not interacting with them at the time, or at least interacting where I have to be concerned about their perception of me.  This became a huge strength for me in my former job, and as it turns out, is a manifestation of one of many savant abilties.  The way that I journal now helps me really give glimpses into my own mind.  While I do my journaling totally for myself (as I do all of my art these days), I’m open to sharing parts that may be  of interest or benefit to others, or where it illuminates where my head and heart were, on some past event that may have gone totally awry. 

It’s interesting to me how varied my self-portraits are—the images are relative to time, heavily symbolic, even iconic at times.  This was done in my cheap standard lined lab-type notebook, in whic the pages are stitched into a cheap cardboard cover, typically imprinted with some sort of marbled effect, in various covers.  My thoughts that day are about my present situation, but the connections to past events…looking back and experiencing the connections more than the details, how I am represented depends upon what I am experiencing as the most important aspects of the connections in that moment.  Here, I am in my early 20’s.  The elephant part of me, has existed and endured the onslaught of many “insults” that have altered my brain to render me something almost other-humanly in how I think and process input from the world.  With the exception of autism, which I was born with, most of it was caused by the decisions by others act or fail to act—some were family, others including teachers, judges, police, school official, and it developed its own momentum after a while, with the blind following the blind, being slapped with labels/definitions that came to be accepted because the path was well worn, and, neuro-typical humans of all ages, and socioeconomic backgrounds, being naturally susceptible to their own attributional and cognitive biases, unique creatures like myself more often will not be able to sustain acceptance when I come up against those biases.  They used to think people like me were schizophrenic, and often spent their whole lives in institutions.  I was kept in one as a child for 2.5 years, records show that I was orderly, compliant, a good student, and remained there only because there was no stable place for me to live who would accept me.  No one.

The filters are a kind of lazy rule-based system that assumes that I should think and act in a certain way because I look like I belong to a certain group, and when I violate the social rules—spoken and unspoken, the belief is that I knew, or should have known about the rule, and that the violated social rule is something that I can and should conform to, without question.   What

I don’t feel invested in the “blame and shame” game, at least when it comes to my own family’s roles in that damage.  I am less forgiving of societal institutions that participated or turned a blind eye, when they could have taken some simple steps to help.  I understand the things that motivated their choices, their biases at the time as society existed.  That does not mean that I am prepared to forgive.  I still feel that I am owed a debt, at a minimum for the many intentional harms (ie., rapes), looking the other way when abuse was staring them in the face and I was complaining of being molested and raped (which they chose not to even report), noticing, documenting irregularities provided them in reports that they never questioned, never investigated, and never told me about, and leaving it for this brain-damaged woman who happened to have certain gifts, to discover from their own records, piece together the connections, and discover the truth, and even then, only after becoming totally disabled by the ravages of all the mistakes and abuses that had accumulated.  No one is willing to take responsibility.  That is wrong.  I am accustomed to that, but that doesn’t mean that it is right to just accept that nothing should be done to right the wrongs that can be righted, and at least recognize these human-made perfect storms. 

Is it any wonder that I feel safer far away from civilization?  Disasters happen in nature, as well, but nature operates by rules, at least, and they may have undesirable outcomes, but at least they make sense.  That is something I can live with.  I can accept death by tsunami, however tragic.  I’m not yet prepared to accept “that’s just the way things are” when the way things are is entirely constructed by humans motivated by personal agendae, that may or may not have anything to do with justice or even equity.  That is my issue.  And if it can happen to me then, and still happens to me now (except that I fight back), it can happen to others, so it’s not just in the past.  I feel a deep sense of personal responsibility to do something before I die to prevent similar harm from befalling others.  I need to become an advocate.

But first, I need to become an effective advocate for myself, and that means going through this right now.  My art enables me to communicate with others, and to get them to be more open through the way I approach presenting the principles, getting acceptance of possible situations like mine, and only then, telling them my story.  It is becoming easier to have dialogues that are more receptive to understanding my perspective, suspending disbelief long enough to consider the reality, and build bridges of understanding. 

I think in pictures, not words.  I learned many languages, trying to discover the key to communicate with others, but it was woefully inadequate.  Now that I can draw, can do art (since almost one year ago for the first time), I am finding ways to bridge the gaps and find opportunities to improve things.  I hope I can live long enough to do something with it that will help others.  Then it will have been worthwhile.

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