Saturday, November 8, 2014

Parents, People, and the Politic of Disability

I have been writing out of a lot of frustration lately...I worry for the current generation of ACCers and ASDers, there still is not in place nationally the supports necessary for us to transition from childhood, to adolescence and adulthood.  In most cases, when a young person becomes 18 years old they loose the services needed to support them.  Many fall through the cracks, ending up in mental hospitals, or jails, or at worse the streets.

While it is better for younger children today; so much more awareness and support that has not existed before now, it is not so for many adults with ACC.

In my own case, my parents had limited knowledge, and also having come from a generation where these disabilities were ignored, denied and ridiculed, I can relate to many adults with ACC.  Certainly not all of them, but many I have talked to lived through the school of hard knocks in life, in regards to family, to adjusting, to making it out on their own.

Many of us, like myself have a terrifically difficult time maintaining employment.  Myself, by the time I was put on disability, had many dozens of attempts at work.  Lacking proper diagnoses, I tortured myself, always wondering why I could not fit in with the crowd.  Technically I possess a lot of skills, but when asked to perform them in everyday situations amidst the persons and politics of social life in the workplace I could not perform to standard.

I carried so much shame with me for years over this.  I grew up with the Protestant work "ethic" being literally shoved down my throat.  My parents believe that the solution to all your problems, is just to work harder.  If you couldn't or didn't work harder, you were seen as morally flawed, of bad character.

I was a difficult teen and adolescent to deal with.  I put my parents through many challenges, frustrations and the like.  I've been told by parents of other children with ACC that while this may be so, I've done a lot of things that are typical of teenagers.

When I was still in my teens, I felt so unsafe in my parent's home that I lived with a man who was well into his forties.   It was a creepy and abusive relationship, I really was still "as a child" in so many ways I didn't understand I was being taken advantage of.  Two friends from a church I'd belonged to, they pointed out to me how bad the situation was, and they moved me out of his home while he was at work.   This same man accused me of stealing from him (unfounded) and dragged me into court, embarrassing my family.  This was really the beginning of the end of my relationship with my parents, and I was still just a teenager.

Accounting for my parent's age, they still hold to wildly false ideas about me.  They've told other relatives that I am a "thief" that I am a "psychopathic liar" and far worse.  I've been assured and told by my doctors many times that "I am no psychopath."  For one thing, I not only have empathy, but I have empathy to the point where it is ruinous to me.  Because of my disability, I can't often separate my own emotions from those being projected by other people.

I hope my readers can appreciate the pain and agony I live through daily, having all of this on my plate.  Both my parents are well advanced in age, and refuse any contact with me.  They will have gone to their grave never even knowing who their son really is.

I still, largely, live my life the way a child would, even so in a 52 year old body and mind.   When I am out amongst my peers, I still feel that way.  I do not feel "equal" to those my age.  I have programmed myself so deeply with many of my parent's errant values that I still mentally torture myself, hearing my father's words in their common refrain "why can't you just grow up and be like everyone else?"

I know of other adults with ACC that go through this.  I have one ACC friend, who, while still in communication with his family feels "left out of the loop."  He has difficulty with (less so, than I, thank God) employment and work, and is himself on the edge of homelessness, where I have been many times.  My heart, it just breaks, for me and all those like me.  Even though his parents know of his disability they use the measuring stick common to the neurotypical world...how can we possibly compete with that?

As we approach the holiday season, I again approach it with dread, with loneliness, with the absence of family...and I know their are other adults with ACC that do too.  What I wouldn't give to have been born in today's generation.  What I wouldn't give to have my parent's eyes open, for even a moment to see who their son has become.  What I wouldn't give, to know my own relatives, niece and nephew that I've never met.  What I wouldn't give...

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