Tuesday, April 19, 2016

But "you don't look disabled"

I can't tell you how many times in my life I have heard this.  My first question is always "what the hell does 'disabled' look like?"  Many people have this skewed idea that unless one is in a wheelchair, deaf or blind or intellectually damaged that one is not "disabled."  I've often thought that this is because the truth of it is just too frightening for them.

This goes along with ableist terms like "high-functioning" or "low-functioning", the one an excuse to ignore the disability, the other to ignore and denigrate the abilities someone has.  Another one I hear is "mild" autism... what the hell is that?  NONE of these descriptions are medically based, but based on an ableist view of the world.

Functioning labels are used to deny agency and deny services, depending on which are used. I know some folk who might fit in both "extremes" of this meter simultaneously. This doesn't really apply (unless your goal is to "other" people).

If I sound angry on this post (as some have sometimes accused me of in my writing) I would clearly admit they are damn right (this time, anyhow.)

I function (minimally) ok on my own, but I will never be in a place in my life where I can thrive without the help and assistance of others.  I fought this fact for decades, for most of my adult life.  I had my own delusions about "rising above" my disability and becoming someone different.  That is because I did not like myself.  These days however, I look at things very differently. I do in fact have my deficits, while at the same time I do have unique skills and abilities and something to contribute to the world.  But I could not see my gifts, my skills and abilities, until I decided to look through the lens of me, who I really am.  I hear some ACC and ASD adults that are always in denial about their differences, and it breaks my heart, because I know that they know differently if they face their own selves.

Accepting one's own limitations is the first step in discovering one's own gifts.  Back in 2008 when I was finally diagnosed with ACC then ASD I experienced the biggest "AHAA!!!" moment of my life.  Up until that point I would strive, and work and fight to be and do things that I simply was not capable of.  This consumed all of my mental and emotional energy so much so, that I never succeeded in discovering my own skills and abilities that I did excel in.  After my diagnoses of ACC and ASD, I was able to put aside so many things, and delegate to others that would and could help me with them.  In doing so, I have now freed up so much mental and emotional energy that my gifts and abilities "jumped out at me" as it were, made themselves known to me.

This being said, almost daily, I am laughed at, mocked, denied, gas-lighted, and told "you are not disabled, you don't 'look' disabled, cut it OUT!" and worse.  The truth is I struggle,  I deeply struggle socially, intellectually, cognitively, emotionally, to understand and to fit in the world that surrounds me.

Even navigating such things as companies, bills, payments, doctors, insurance, etc...is far beyond what I am capable of doing, without help.  If I didn't have my advocate (call her "L") right now, things would be much worse off for me and I doubt I would even be in as good a situation as I am currently in.

I am so fixed by routine and ritual...and if one thing changes in it (the routine) my entire effort at building a habit (for example my ADLs) comes crashing down and I can no longer do it.  This includes things like showering, brushing teeth, laundry, housecleaning and more.

I'm 53 years old...and remain terribly lonely.  If it weren't for my therapy dogs, Boris and Natasha, I would quickly lose the will and desire to live and function, let alone thrive.

In any given social situation I am constantly second guessing myself..."did I say the right/wrong thing?" "Did I do the right/wrong thing?"  "Did I understand them correctly or did I get it wrong?"  Needless to say, this alone is so exhausting that I limit my social interactions to those people who know me well.  In the "real" world, I can only think of maybe two people that describes.  My entire "social" life consists of communication of Facebook, because it's safe and available.

I doubt I will ever have a meaningful long-term-relationship (the kind you would have with an intimate partner) because I've not met anyone who cared long enough to get to know me and all my quirks.

I'm always and will likely remain the "other" as long as I live...sometimes (often) I'm fully exhausted even at the start of a new day, nothing to look forward to....this is one of those days...I'm sorry for the rant :(

2 comments:

  1. Hello Joe! I'm from Brazil and I probably will nevef understand what you've been through, but listening to your story with Chris inspired me to chase a different path in my life (professionaly and personally). I want to be able to be there for kids, and adults, in the same situation and maybe help everything be better in any way I can.
    Thank you for sharing your life with us and keep on fighting!
    The world will begin to understand and I hope we'll grow and have more compassion with others.

    Thank you!

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  2. I am also so tired of people thinking im lazy or avoiding them. And hearing i look great! You dont look sick, well it makes me want to scream!
    I mean, im glad i look good, but inside im suffering. If they took the time to know me then they would see how sickly i am.
    I have a long long list of diseases...just got a new onw*Narcolepsy

    Anyway... I need to get myself on a schedule to get things done.

    I also have a 15yr old with Autism.
    He also looks healthy but is not. People pick on him mostly for his eating issues.
    He doesnt have a single friend. Just me and our dog

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