~Rumi

All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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04 May 2010

World Autism Interviews: Spacey Hippie/Portland, Oregon



E: You are self-diagnosed as being on the autistic spectrum. What do you feel are the main barriers that prevent self-diagnosed autistic individuals from gaining an assessment if they wish to pursue a formal diagnosis?

Spacey Hippie: the main barrier is: i don't know who to ask. one of the questions i have is: where should i go, who'd be best? i have the hardest time finding out where to go n how to get there

i've taken a few autism tests online (scored as expected, just over the line) but that's not accredited, it's only a guide: like astrology (colloquially, entertainment only) legally you can't take it to anybody

mostly what i've found is absolute nothing: as if it's all in my head. and that's the real barrier: what you get back from the world is the same as if everybody's like that, cuz no one has the authority to say: yeah, here's what this is, n now we're gonna give ya what ya need (n then knowin whatever that is already as they're worthy of that authority) n often no one wants to speculate on any subject involving empathy so they're either... really for it... or refuse to have an opinion...

n that's if you have health insurance which i do, from being on disability... but if i didn't have that, there'd be no way...or i'd have no clue

the biggest barrier is someone like me is... powerless, uninformed

E: You are diagnosed as agoraphobic. What unique challenges do you face when pursuing assistance and services as a person who is agoraphobic and autistic?

Spacey Hippie: well, first thingy is: people don't believe in it... or they have no sympathy no understanding comprehensive compassion... n don't have to

cuz everybody feels a little social anxiety, n they think that's all it is... n that i just simply refuse to get it... n therefore, i'm bein a big baby... at which point, no respect for me... so it's a form of bigotry... totally... n why am i so nervous all the time? i dunno, yer job requires dispassion?

my brain actually shuts down... i become intellectually disabled, i lose half my IQ: forget how to make change, tell time n then i get taken advantage of easy... so now we know why no one was acknowledging... n now i'm bein paranoid

where my autism kicks in (n it was there from the start) is: i can't deal with corporate... i can't handle a phone call... objection: pressure

n in order to get help with that that's just what i have to do... which i'm no good at... n it damages me, mere attempting... n little thingies, like sitting in the waiting room for 45 minutes filling out forms... dude, i can't handle that... tough, too bad... only option... n then what the appointment or phone call... or runaround turns out to be... (and i knew it)

so there's no avenue set up for me to follow... anyways it... is a fruitless endeavor, no solution possible... but no one will admit they don't have every answer i could ever possibly need initially... n corporate = zero flexibility...

but just that right there: that i can be so easily dismissed... they know i'm a sap, or too silly... so therein is sufficient auto-irony (n society creates its own satirists)... but that system is not designed to target n fell people like me, is it? it's just we're a minority...

i need an in home care worker... n not like an elderly or physically disabled person (i can do my own laundry n dishes) but it's such an abstract concept that people don't hafta understand it if they don't want to... no one's ever heard of such a thing... i go away feelin silly, which is my problem being so alienated...

frustrating, desperation n then i become too absorbed in it n think "man, my life is such a mess" ...and i really need to do something about it, but i can't, or not well enough, so i fail... but there's nothing else to do... if i become unable to do anything, even just watch tv... debilitating... whatever my affliction, i feel like i'm in prison

E: What do you feel is assumed or misunderstood about people who are autistic as well as agoraphobic?

Spacey Hippie: seriously, no one knows what agoraphobia means... it's from the greek... fear of the marketplace... crowds, basically... being around people is associated with...things going badly...

n as for autism... if you think of a savant, you know there's something missing... i think it's confused with Tourettes and such, but society so pushes individuals to excel... n justa fit in... that we forget that the so afflicted are not these like rare anomalies, not like dots on a map... some static on the species, or people missing a circuit... it's more of a gradual thingy n those with it only a little... learn to hide it, compensate... even never know they have it... n those of us who can't do that... that's one of the functions we're missing

n if it's a really super ordinary thing, like agoraphobia... going to the store, going out to check the mail... my friends don't understand... they think i'm... whatever... being silly, extraordinaire...

i'm the guy who can't function without an assistant... who never made enough money to be able to afford one (some people need glasses)... and on needing an assistant: there's a million people on this planet who can solve this problem in 10 minutes, i need to talk to one of them for about 10 minutes

E: What is something you would like people to know about both autism and agoraphobia?

Spacey Hippie: to be without wisdom or reason is both unwise and unreasonable


n here's the part where i say, "we rule," or, "we rock" (n some of us do, back n forth... it's what we do)... n i don't mean that disparagingly... n yes, funny, but in the nicest possible way, that maybe many people really don't even see... we needta be looked after... n more'n jus put inna box, ok?

(on Fraiser, the other day) Freud said "we need 2 things to be happy: work and love" ...translation: something to do n someone to share it with

E: What keeps you going when life overwhelms you?

Spacey Hippie: Dilbert sez: the cure for loneliness is feeling like yer being listened to... getting someone on the phone is usually the highlight of my day... especially someone i know... or someone who can help me

i feel like i'm the only musician in town that doesn't have anybody to jam with (that wants one)... i'm a musician, i jam a little... but ya hafta play well... otherwise it's embarrassing... i should play daily, but it's hard to when yer depressed...

like, what i did just now is: dishes (add house cleaning to accomplishments); and it'd been pilin up for a coupla daze, n my once in awhile scrub out the sink didda good job, hooray... now i feel like jammin...

E: Tell me about your comic Dudeman.

Spacey Hippie: i should pack the whole thing up n label it: "things you tell liars" ...this is what inspires dudeman episodes... all the frustrating things you think of, that need to be said, and often aren't:

wow, you get to be totally be like that n no one stops you?

izzit that you want me to... guess?
izzit that you want me to... guess...incorrectly?
izzit that you want me to... keep...guessing?

E: Thank you for this interview.

Click here to check out Dudeman. Click here to visit Spacey Hippie's website.

4 comments:

  1. I've come to the conclusion that if you don't have health insurance you are invisible. Add that to the fact that many people already see me as invisible because of my Autism and it is extremely difficult to make people help, let alone get them to want to help. There are a few places that will give me a free screening but ONLY if I get a referral from a doctor, which I don't have and likely will not have for many years to come.

    It was difficult for me to follow Spacey Hippie's style of writing, but wanted to share that I have a similar experience. I don't think I have agoraphobia but it did take me months to finally speak to the people in the disability services office at my school. I did not get any help whatsoever so all of those months getting the courage to go in there seems like such a waste of my energy. They concluded that I should start calling people at various organizations that had "heard of in passing." I tried to explain that calling random people is even harder for me than talking to them in person because it's much more difficult for me to interpret tone or know when it is my turn to speak and they basically laughed at me and said it's hard for everyone.

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  2. Thanks for stopping by, Sushipie. I'm glad to have your added experience--the more our collective stories are heard, the better.

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  3. here is what i suggest: that we should stick together... eventually, we'll come up with someone sympathetic to our issues; and challenges in dealing with them: and then we'll be able to solve problems... too often these daze, everybuddy's so too busy to help or to care or to think or to be aware, no time to share (ok, i'll stop) and we fall thru the cracks... n maybe never to return... which is fine with society, what it's set up for: the level which it is capable of dealing on, how it came outta the box... and therein lies our problem, and our hassle... this is how we are: we're inadequate, not reaching everything we need to, too... so maybe it is up to us, the so motivated (that fire burning beneath us), to try n create a connection... whatever way we can... i urge togetherness, for divided we are conquered... i urge discussion (a chat room, even), for emboldened is together... united... n thus happy n stronger ;o)

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