Tuesday, December 2, 2014

Adults with Developmental Disabilities, Accessibility, Poverty, et al...

I hope to share some of my personal experience, my personal pain and struggle in this post...Expect it to largely be my venting and stemming from frustration.

There are many diagnosed with ACC and/or ASDs that fall through the cracks of society.  Since the 70s there has been increasing funding and benefit for minors with an autism spectrum disorder, or ACC or similar disabilities.  Where society has utterly failed, in my personal experience is in the process of integrating us into the larger society.

For many of us adults in my age range, there is the added humiliation of estrangement from our own families.  Granted, the resources (to understand these disorders) just were not there for our parents as we were growing up, yet many such parents (as my own) remain locked away in their 1950s "psychology" of blame the victim or shame the victim.  Such is the case in my own life.

Both of my parents, very hard working, providing for me as a minor, flatly, and obviously gave up on trying to help me by the time I was 21 years old.  Even faced with medical evidence, they would rather hold on to their grudges, their anger, their "position of safety", not having to deal with guilt or shame in how they raised me.

Sadly, my story is not in any way unique.  Having talked to dozens of adult ACCers and ASDers I hear my story over and over and over again.  Basically, at 18, I was expected to "go out, get a job and move out", but as doctors now know, emotionally and socially I was still 10-12 years old...I very quickly got mixed up in bad crowds, trying to survive in a cruel world.  I even had my "spin around the block" with hard drugs, which years later was cruelly in evidence of my advanced Hepatitis C.  I went through a long and difficult course of chemo to beat it, and I DID thank God (though just in recent years.)

Throughout my 20s, 30s and even 40s, I went through the "mental health mill" of wrong diagnoses after diagnoses, sometimes even causing me worse problems with mental health due to medications that they were pumping me with.  I have been abused by people, by doctors, by clergy, by police, the list goes on.

Diagnosed with ACC and ASD in my late forties answered so many questions, and I've been able to at least improve my quality of life, and get the supports I need, at least for a while.  After the death of my best friend, who housed me and cared for me, I am again stranded in a place with no services, not even proper medical care...and society (pardon the language) doesn't give a shit.  My own parent refuse to believe science, refuse to believe a doctor's diagnoses...so I don't even have family.

What is society to do with the many DD'd people coming of age and being classified an "adult" when all the supports are taken out from under their feet because they are no longer a "dependent"?  Truth is, on some level I will always be a dependent and I cannot change that...so does this mean society has the right to throw me out as so much trash as they have?

I have an awesome friend, she like me is both ACC and ASD.  In many ways she is more functional than I and is trying to help me learn some much needed skills.  She is trying to move me out of the desert, even temporarily, until I can find a viable living situation where I can get my needs met.  We have even set up a fundraising site, we want to get me out of here by February.  We are trying to raise $3000, enough to move me, put my things in storage, until I find a more permanent solution (someone would be taking me in temporarily with my dogs, until I found reasonable accommodations.)  I have resisted up till now, using my blog for any appeal, but feel that I must do it now.  My social and emotional skills, distress tolerance and cognitive abilities are all decompensating here.  I am so isolated (in the Mohave, "Needles" CA) I can go a month without talking to anyone, and even groceries are a 45 minute drive away.

The link is https://www.youcaring.com/HelpJosephMove if anyone cares to help.  If you know of anyone that can help please pass the link along.  I'm truly sorry for using my ACC blog as a platform for this fundraiser, but it seems I have no choice.  I appreciate the fantastic moral support I have gotten from both the autism community and the ACC community, and now I am pleading for your help.

~Joseph

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