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Thursday, June 11, 2015

"Neuroism": It's Alive and Well

It always starts the same way, like the road to hell, paved with good intentions:

-Let's go to the Botanical Gardens next weekend! a close friend or extended family member says, there's a new exhibit and a group of us are already going.

-Oh thanks, I invariably reply, but it's going to be too challenging for me. Enjoy and have fun!

-Why?! they always respond. I must note here that the WHY of my struggles has been repeated endless times ad nauseam. I've shown them my blog, my articles, my book contract. I've illustrated my SPD in great depth - painted full-length visual portraits of my vision and hearing during a sensory shutdown, of the death-like detachment. I've sung sonnets of what it feels like to be eaten alive from the most tender inner flesh by ceaseless sensory information. I've presented the science, detailed groundbreaking studies, pointed at the faulty white matter on the page and back at my own head.

They already know why.

-It's too tough for me with my sensory issues, but truly, go and enjoy! My reply is always the same - upbeat, hesitant to keep anyone from experiencing something that they deem "fun" even if it's something that I'd deem "miserable," especially if the proposed activity will unnecessarily tax my uber-sensitive senses and not engage the ones I need to seek.

-But it's going to be quiet, they insist.

My skin begins to boil. I don't have the patience to explain my SPD yet again to someone who has heard about it for years. It's not just about noise level. For me, it's about sound and visuals and movement and how my body feels in space. It's about how sound travels and is contained, and how it's then processed by me. It's about the temperature. It's about seeing an accessible exit and feeling safe both within my body and with those around me. It's about acceptance and understanding and the most basic levels of human decency. It's about telling someone something pivotal about myself, and them making the effort to understand. It isn't new to them, and yet by making this simple statement, it's going to be quiet, it is clear that they haven't learned a single thing about my SPD. They don't know me from Adam.

-It's not simply about the noise level, I begin, agitated, violated, misunderstood. And then I stop, because for someone like this, someone so clearly oblivious and unwilling to flex their mind around someone else's differences, nothing I can say will save them from their lack of understanding.

-Okayyyy . . . they respond. We chat a bit more about nothing important before we hang up.

I am left each time with a haunting feeling of shame and guilt. The ghosts of old internal negative talk whisper in my ear. What's wrong with you? they intone over and over. Why aren't you normal, why can't you be who everyone wants you to be? Why aren't you someone different? I secretly cry at my own shortcomings. There is nothing more painful than being belittled for who you are, especially for something you can improve only to a certain extent, but cannot change.

I have chosen to call this experience "neuroism," for lack of knowing a better term - the opposite of one of my favorite newer terms, neurodiversity. In my opinion, "Neuroism" is the prejudice, discrimination, and antagonism of a person with neurological differences by someone who thinks that their personal neurology is superior. I should never have to feel ashamed of something about me that I have and cannot simply drop. Much as I can't change the color of my skin, I can't change my neurological makeup. I shouldn't be pressured to do so or shamed by anyone for how I am wired and for my related experiences.

Ignorance is no excuse, especially when someone is repeatedly presented with information geared to help them understand. If someone was educated over and over about their racist or anti-Semitic behaviors and then continued with their unacceptable approach, would they not still be racist and anti-Semitic? Ignorance towards any group that is seen by someone as "different" doesn't make the words they choose and their approach acceptable. Aww, they're just being ignorant is a phrase you will never hear. Ignorance that lasts beyond a period of education is especially not admissible. This is something that makes me particularly angry. I am standing here, arms open wide, ready to answer any and all questions to help bolster your understanding of SPD and sensory issues in general. Am I not the raw, open advocate who blogs about even her most touchy subjects? Do I not encourage everyone - strangers, friends, family - to email me with even the smallest question? Do I not write articles for unnamed faces across the internet exploring the depths of this condition, explaining everything that I can? I have done all that I am able to educate people about sensory issues. At some point, the onus falls away from me and I have done all that I can do.

I will not tolerate intolerance - as intolerant a statement as that is. I will not tolerate "neuroism"going forward. I will no longer feel ashamed for my makeup, for the way that I am biologically and neurologically formed. I am proud to be different, to experience the sensory world in a unique way that allows me to take a stand and be the voice of so many like me. It is my life's calling and my life's greatest burden. Antagonizing me about something I cannot change will no longer make me feel guilty and broken. I take that power away from the ignorant and I leave them with these words. Until we all learn to understand, accept, and embrace the complex differences that make us so beautiful - whether these are differences in race, religion, gender, sexuality, or neurology - we will never reach our full potential. We will continue to miss out on the true extent of the human experience.

3 comments:

  1. I was just thinking about this the other day about my son.... we were invited somewhere and I just didn't have the energy to explain why we just couldn't go... it would be too much. We already had a sensory packed day yesterday. We have other sensory-filled plans later that day and we have to save up our reserves. We have to pick and choose where we go, when we go, if we go. We don't say no just to say no.

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    1. Exactly, Jennifer, and well put. When people push this further, it just shows their ignorance and inability to accept variations and differences within the human experience. When someone who knows me and my SPD questions me further, I feel almost violated by their inability to understand. Glad to know that sensory parents of sensory kids are in the same boat!

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  2. yes. it is hard to explain myself...even to me, i am afraid i dont really know much about how SPD influences my life and how does i feel.
    everytime my friends asked me to hang out, i felt nervous because i knew it was so tired to listen, organize, and then speak out! The process is difficult !! that lets me lost much life experience and i think it will influence my future life----like studying, working,etc.
    i dont know how to get through this thing. i always ask myself "why cant you tried harder and harder" and believe i am not work hard enough to change my situation....
    I feel so depressed about i cant change. But the most important thing is i dont know what to do, it seems there is no way to change and let me become others that can participant in all activities and no fatigue...

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