Wednesday, March 2, 2016

One Step Forward, Three Steps Back...no rest for the weary...

It seems as though my life is destined to be this cosmic and hectic dance, one step forward and three steps back.  If it seems as though my posts have betrayed frustration, anger, disappointment and disillusion lately, you are not off the mark by much. 

I have been thinking a lot lately, about the families I know with children that have ACC and/or ASD, and what those kids will face as they mature, their needs change and grow...I've come to the conclusion that today's world is still largely a hostile and inhospitable place for those with disabilities, those that are in any way different and neurodivergent.  While things have improved IMMENSELY in the USA because of things like the ADA  the facts are that the country and the people are slow to adapt to change.  I'm in a situation right now where I have had to ask for reasonable accommodations, because I was literally told that "if you are poor, you don't deserve the same services as our wealthy clients."  It has me shaking my head in disbelief.

Through my SSDI and Medicare I have quality insurance, but providers are free to reject my insurance and not see me, because they don't like the billing procedures involved...and so in a town with multiple hospitals and large clinics I am having trouble even finding a doctor who will see me.  The one physician I saw, refused to write my ACC into the record, and to treat me according to my diagnoses, being utterly dismissive over the issue of my disability.

WHY, in this time and place, when laws have been put in place to prevent this sort of thing, do I have to fight for the smallest scrap of dignity and equal treatment?

I have had people tell me "you can't be disabled, have autism, ACC doesn't mean anything, because you are walking and talking just like me."  People are too ignorant to understand that not all disabilities are visible ones.  I often dare people to spend just 24 hours in my brain; many if not most of them would be curled up in a ball crying in fear by the end of the day if they understood what I cope with on a daily basis.

Sometimes though, I get tired, I'm exhausted over fighting for my rights...

I have the added benefit today of having a caring Advocate, and some connections with Adult Protective Services.  Yet, I am often down on myself for my lacking the ability to do these things myself.  There are some with ASD and ACC (unlike myself) that are also intellectually disabled...and (I beg forgiveness if I offend any ACC parents of children like this) I often wish that I were born intellectually disabled.  Why?  Because then I wouldn't be so acutely aware of what I am missing out on, on what is "wrong" with me.

The most frustrating thing (to me) is to go through life around neurotypicals and see myself faltering wrong with you, you are just lazy, and all your problems would be solved if you just got a job and worked harder."  I have a really difficult time with this...I have a hard time accepting myself as I am, even in light of my diagnoses.  I (can) judge myself incredibly harshly at times (less so, now days, but when I do still just as damaging.)
and not being able to "keep up."  A lot of this goes back to my own parents.  They wholeheartedly worshiped the Judeo-Christian Work "Ethic." They believed (literally) "there is nothing

I have come a long way from this.  Proper diagnoses has helped relieve me of much of the self-imposed guilt and shame and judgment that I carried around all my life.  Yet, when I have to continually fight for myself, it wears me down, and I end up in that horrible mindset all over again.

This is definitely one of those days for me...

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