Friday, September 5, 2014

Ability, Dis-ability, Other-ability and Balance...


Finding the balance between independence and interdependence at 51 years old is just as, if not more complicated than it was at 5 years old.


Unlike typical children, at the age of "maturity" or 18, I was still very much like a 10 year old child (still am in many ways.)  After all, it is said of ACC to "expect their teens throughout there twenties."

When I speak about balance, I speak more of a homeostasis or a dynamic balance.  I (personally) don't believe there will ever come a time where I (or anyone else) will find "balance" and never experience imbalance again.  This may be an ultimate fantasy that I (and others) strive for, but it doesn't exist.

Having said that, my life has been a constant struggle to express my individuality, while still needing support for the simplest of things (in life, that are easy for neurotypicals.)  I have spent quite a bit of time over the years in my blog advocating the concept of "Other-abled" and I still believe it valid, but even us non typicals (in my opinion) should not use this as an excuse to ignore our real needs.

After the death of my best friend and soul sister Troya, I find this to be "on the front burner" with me all the time.  She taught me, and showed me what metal I was made of.  I watched her, while she was in remission take care of me while I was on my chemo/immunotherapy, and her strength changed my life.  She was often wont to say "I am not strong because I want to be, I am strong because I have to be!"  Troya had a focus of Will(power) that as yet I've not fully grasped in myself.  Yet her example gave me a pattern to imitate.

I think others are often confused about this issue as well, especially when dealing with disabled/other-abled folk.  People judge by their own standards, looking out of their own eyes, having walked in their own shoes, but rarely (can) take the perspective of the other.  Especially when dealing with developmental and/or mental disabilities there seems to be a constant prejudice that "If I cannot see it, it isn't real."

Many disabilities are "invisible" disabilities, in that you are not walking with me, day in and day out, unless you were "in my head" you'd never really be able to understand what it is I live with and cope with on a daily basis.
I don't (necessarily) judge people for this either, it is almost innate in the human experience to experience the world according to our own past experiences.  The brain craves (firstly) to put new experience on a scale and reference with our past experience.  Only when it is convinced it has never experienced it before will the brain take it in "unbiased" and unaltered.

Many on the Autism Spectrum, as well as many with ACC often are constantly judging our own behavior, over-thinking our every response and communication, because we already know that we are not neurotypical,  we end up judging ourselves and our communications over harshly and with bias.  Sometimes we need to do this, but often it just gets in the way and creates more problems.

ACC while known about for a very long time has only really received clinical attention in the past few decades.  Even so, we know more about it now that we have ever before.  This knowledge can give individuals like me and you (the ACC reader) more hope, more possiblities than ever before.  

Yet where I continue to struggle is the balance between evoking my talents, skills, strengths, and abilities, and recognizing where I fall short, where I need help to function in typical daily life and society.  This is not always easy (it really never is) , because it is so difficult for me to recognize where I'm needing help, I often need the mirror of others and experience to tell me this; and to be able to relate this to those that can help.

I can relate my experiences better in writing than in speech, even though I actually have a very high verbal IQ.  I can know something inside and out, but when asked (on the spot) to relate it, I often have difficulty putting it into words.  This has changed a little, for the better, in recent years, but it will never "be cured."  It is the way of my neurology and personality.

It really is a lifelong struggle, journey, whatever to come to some sort of a balance...being able to ask for help when I need it, and yet being independent and even encouraging independence.

Some would say, "but yeah, look at you, you've been intelligent enough in life and resourceful enough to put out the firestorms in your life" etc...but that's just it, I crave a simple life, challenged in a good way, yet stable and secure in another.  ACC can cause someone to appear wildly inconsistent, and I've never hid the fact that I am no different! 

I am fully aware that even your average/typical human being experiences problems with self-esteem and such, but throw on top of that this disability, and the fact I'm not always aware that I need the help that I need then life as I live it is constantly frustrating.  Human beings are always on this kick of bettering themselves, and that's fine, I'm copacetic with it, but learning to accept myself for who and what I am (or appear to be, at any rate) is turning out to be a lifelong project.

To be certain, I'm farther along that path today, but it has not always been so, even until my recent history.

Having said all of the above, I remain an advocate for the concept of being "other-abled."  In truth, it could describe anybody and everybody.  We all show up in this world with different skills, abilities and the like, we are all unique and uniquely suited to fulfill a role in life that can be acted out by no one else.  I believe in a society where this type of thinking should be encouraged, and acted upon.

~j


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