Sooo I had planned to do this update on Tuesday, because I can get pictures of Mandy & I together on Tuesday (the only non anime pics I have? Are from a dance event. Annnd that's a lot of ab visibility for the internet).
But the Autistic community & our allies never fail to impress. Today, at about noon Pacific time, this fundraising campaign hit goal.
I put it up Friday. Today is Sunday. And Mandy is a bit in happy shock & cannot process. And I am in the same kind of shock except I'm of the "burst into tears" school of emotional overload.
Sooo no pictures today, but I can give an update:
-Goal has already been reached. Wow.
-We got plane tickets last night, before we hit the goal number. That way we end up on the same plane.
-We're researching hotels to stay at the night we arrive & the night Autreat ends. That's next item on the logistics agenda.
-When registration goes up, that's all covered.
HORRAY.
So this was awesome, right? Well. I want to be able to do this for more people in the future. To make that happen, I'm going to be setting up an Etsy store to sell bracelets & keychain thingies & other beaded stuff that I make, & possibly things donated from other people who wish to help out. Proceeds from those sales will go to an Autreat travel fund. People who aren't autism-intense buy crafts, & that's a year round kind of effort.
I'm so. Very. Happy. You all rock.
One of the bracelets I made for a donor:
When the mob and the press and the whole world tell you to move, your job is to plant yourself like a tree beside the river of truth, and tell the whole world
"No, you move."
Sunday, May 26, 2013
Friday, May 24, 2013
Meet Mandy. She should totally go to Autreat,
Last year, through TPGA & crowdsourced contributions from the Autistic & ally communities, I got to go to Autreat. This was a life changing experience I've written about fairly extensively at TPGA. Autreat is more like a family reunion than a conference. The experience gave me permission to set up my environment for me. Like I said, life changing.
Our community is generous and beautiful. It brings tears to my eyes in that "I am overwhelmed with wonderful" kind of way, just how loving and giving my community is. We're a community with very high poverty rates, yet we take care of our own. I'm not sure where this idea of "no empathy" comes from, because it is the exact opposite of my experience. I love our community more than all the words in the world can express.
As a known quantity with a long history in our world, I have benefited greatly from how our community helps each other out, probably more than I deserve to. So. I'd like to ask those of you who can and wish to to share the love with someone you don't know, yet, but totally should.
Meet Mandy (we totally went to the same artist for internets portraits).
Mandy has fairly recently discovered the Autistic community, and she is my friend. Not just my friend though-our local Autistic community benefits from her presence. Have you ever had the kind of friend who does stuff that's hard for them too when you're stuck because friends help each other dammit? Mandy is one of those friends, helping with the paperwork and phone calls we all struggle with. We work together on the local teen mentorship program (along with others, of course) and she levelheadedly explains neurodiversity ideals, conflicting access needs, and other difficult topics to those who are struggling to understand them.
She has other advocacy and education ideas as well, but like all of us, Mandy is more than her activism. She is a genuine friend dedicated to not hurting anyone or making them uncomfortable. She has an infectious love of Egyptian belly dance (infectious being the key word here; several of her friends have tried classes because of her) and is the mother of one of the cutest kids on the planet. Oh, and we have had more than a few non stop gigglefests. In short, Mandy is awesome.
Have I sold you on how great my friend is yet? As with everyone, there is more to her story than is my place to put here. Let's just say, like all of us, Mandy needs her community. We all need people like us, safe places, safe people, environments that build us rather than drain us. And our community needs Mandy.
We would both appreciate any help you can give.
I make interchangeable beaded bands for medicalerts & other IDs and am about to start making beaded bracelets that say LEFT/RIGHT or STARBOARD/PORT. I will make a single-strand bracelet in the colors and length of your choosing for a donation of $25.
For donations of $40 or more, I will make a double stranded bracelet in the color and length of your choosing.
Please leave me an email address at which to contact you about your bracelet if it's different from your paypal primary one.
FINALLY. Here is the link to the Fundrazr page. Thank you so much!
Fair disclosure: this is coming through my PayPal bc I actually *have* a paypal & it actually works. Important thing in fundraising, that....
Our community is generous and beautiful. It brings tears to my eyes in that "I am overwhelmed with wonderful" kind of way, just how loving and giving my community is. We're a community with very high poverty rates, yet we take care of our own. I'm not sure where this idea of "no empathy" comes from, because it is the exact opposite of my experience. I love our community more than all the words in the world can express.
As a known quantity with a long history in our world, I have benefited greatly from how our community helps each other out, probably more than I deserve to. So. I'd like to ask those of you who can and wish to to share the love with someone you don't know, yet, but totally should.
Meet Mandy (we totally went to the same artist for internets portraits).
Mandy has fairly recently discovered the Autistic community, and she is my friend. Not just my friend though-our local Autistic community benefits from her presence. Have you ever had the kind of friend who does stuff that's hard for them too when you're stuck because friends help each other dammit? Mandy is one of those friends, helping with the paperwork and phone calls we all struggle with. We work together on the local teen mentorship program (along with others, of course) and she levelheadedly explains neurodiversity ideals, conflicting access needs, and other difficult topics to those who are struggling to understand them.
She has other advocacy and education ideas as well, but like all of us, Mandy is more than her activism. She is a genuine friend dedicated to not hurting anyone or making them uncomfortable. She has an infectious love of Egyptian belly dance (infectious being the key word here; several of her friends have tried classes because of her) and is the mother of one of the cutest kids on the planet. Oh, and we have had more than a few non stop gigglefests. In short, Mandy is awesome.
Have I sold you on how great my friend is yet? As with everyone, there is more to her story than is my place to put here. Let's just say, like all of us, Mandy needs her community. We all need people like us, safe places, safe people, environments that build us rather than drain us. And our community needs Mandy.
We would both appreciate any help you can give.
I make interchangeable beaded bands for medicalerts & other IDs and am about to start making beaded bracelets that say LEFT/RIGHT or STARBOARD/PORT. I will make a single-strand bracelet in the colors and length of your choosing for a donation of $25.
For donations of $40 or more, I will make a double stranded bracelet in the color and length of your choosing.
Please leave me an email address at which to contact you about your bracelet if it's different from your paypal primary one.
FINALLY. Here is the link to the Fundrazr page. Thank you so much!
Fair disclosure: this is coming through my PayPal bc I actually *have* a paypal & it actually works. Important thing in fundraising, that....
Monday, May 20, 2013
Liveblogging of quackassery! Part 1
I live in one of the lands of rampant woo. One of the things I do weekly happens to take place in a facility that also rents to purveyors of bullshit. We also have at least 1 monthly paper dedicated, apparently, to utter nonsense. Apparently the faces I make when reading this crap are hilarious, so I am going to read these...alternate views on reality and post my reactions to them. Expect profanity and gross simplification of science, as my immediate reaction tends towards "explaining to someone who hasn't had a science class in over a decade".Today I am going to be liveblogging the May issue of "Natural Awakenings" (subtitled HEALTHY LIVING HEALTHY PLANET). The cover promises that I can go lean and green on a bike, which probably has some credibility. It also tells me we now know how to age gracefully (as opposed to clumsily? Does this mean 'look young forever'? I've got that one down...) and it offers a 'natural, gentle cleanse' for spring detox. I think that has to do with a weird diet and probably pooping.
I open it up. WOW THERE ARE A LOT OF ADS. I might make a list of advertisers for my own personal use, businesses to be wary of supporting. The first page is a full page ad for a dentist, Dental Designs who appears to not take insurance, but they do take credit cards. Very important to make sure your card will cover your...full service, mercury free dentistry. Yep, they are a mercury free office with an amalgam removal protocol! Because your fillings are giving your nephew teh autisms. Or are going to give you dementia. Or something. THEY ARE TOXIC, that's the important thing to know. They're also a latex free office, which is actually important for some people, but I just can't get past the filling removal thing. They're also making a very big thing about their "advanced cosmetic dentistry" which is, again, nice I guess. Bet this guy opposes fluoridation-gotta get those nice expensive amalgam free fillings into as many teeth as possible.
Next page: letter from publisher. There's a picture of him. Ohmigosh. I just won hipster bingo. He's got that "I'm a lumberjack, but greener" look going on. Apparently this month is on "women's wellness", hence...anti aging? Because only women get old? Oh I see, men can 'learn something'. We're all going to learn to nurture our inner beings with this issue. But I don't want my inner being to get out =( It can languish in a cage of autism & I'm cool with that. He also plugs for the advertisers, obviously-they're experts on green living and health and wellness. What is this wellness thing? I mean, in theory it should be just a word but it's a quack flag...
OH WOW this dental ad, for Aesthetic Dentistry totally puts the other one to shame as far as advertisement of bullshit goes. They're all "yay nature...btw porcelain veneers", which, while not exactly quacky, is hypocritical. I suppose it's ok to augment your natural smiling smile as long as it has no toxins. Or fluoride. Bet these folks are against fluoride too. They're a holistic dentist, you see. Does that mean they look at the whole...jaw? mouth? face? skull? patient? bank account? I don't even know. They're a top dentist according to Portland Monthly Magazine, which is an appeal to popularity if I've ever seen one. Apparently these folks also remove your mercury fillings (mercury! toxins!) and do metal free tooth restoration in just one visit! So. Um. I am unsure if there's anything you can put in your mouth that's as strong as teeth other than metal. Or diamonds, which I don't want in my mouth for many many reasons. I'm not a dental nerd, but just seems unlikely. They use bioidentical dentistry, which is written up on quackwatch as a big steaming pile. They have a fancy name and equipment for it, though, so it must be SCIENCE. I'm also unsure what this Nu Calm is. It says natural sleep sedation. Sounds unlikely. Their website is not changing this assessment. Apparently snoring and sleep apnea are also within the purview of this dental practice. I'm pretty sure that's not actually how it works...
Wow. This is more painful than I'd expected. Imagine if I was really digging deep, eh?
Next page is just table and content, a Habitat for Humanity ad, and a small ad for one of the many opticians in town. Ok. Whew. Can breathe a bit.
Page 7 is more table of contents, how to advertise...and yet another mercury free dentist who will remove your amalgams safely! Holy shit Portland, maybe if we fluoridated our water like sensible people we wouldn't need so many damn dentists. AAdvanced Dental not only will help you demercuryfy yourself (because apparently we have a toxicity issue?), they also use low radiation digital x rays-there are things about this that sound not right, somehow, probably because x rays by definition are radioactive-and they will even coordinate with natural health professionals! Oh boy! The fine print is nice and not eyebrow raising at alllll, either: their healthy office environment has purified air, because all that natural outside shit? No thank you. They offer 'immune system support' as part of their healthy office environment but that doesn't even make any damn sense. Are spare antibodies just floating around to give you a hand? This one does take insurance, but also wants you to know about their interest free financing. Also that they use lasers to find caries and on the gums. Cuz lasers are SCIENCE.
Oh boy, the next page is newsbriefs...which look to be more ads to me. There's a new chiropractor at a place, replacing one who left...to...practice chiropractic on animals. Oh my god no. Don't do that. They can't consent to that shit. Apparently New Dude "integrates therapies" (don't they all?) and treating standard musculoskeletal pain is listed rather like an afterthought. Post surgical scar tissue removal? Really?
Beneath that is an ad for sunglasses-apparently they can prevent crow's feet. Ohkaythen. And next to all this? The community college wants to help you start a career in holistic health! Oh yay! See the whole wallet! Er, patient. An online herbalism program? I'm sorry, I just can't trust any health professional who got their certification online, no matter how much of me they see. That sounded wrong. But. Yeah.
Turn the page...more ads...I mean community bulletins...no I mean ads. This new yoga instructor who is also a Five Bodies Therapist (this is a new one on me. But apparently we all have five bodies we need to work with for healing? I wonder where I am storing the other 4) calls herself an integrative therapist and holds planetary tea parties. This is another new one to me. Do the planets have a tea preference?
Beneath that is an ad for a class I would actually consider attending if it wasn't in Bullshit Monthly. It's a Pilates & Ballet Barre workout, which doesn't have any magic powers and is exactly the kind of thing that benefits me, except if it's surrounded by so much bullshit in advertising, how do I know it isn't full of unadvertised nonsense ideas?
The sidebar of this page is letting me know about one of many acupuncture/massage/chiropractic clinics in town that does "pain, injury management, and more". I am not sure what "more" entails, since there's not any other appropriate scope for those things. And then? Oh god.
Beneath that is an ad for Quantum Touch workshops. Manipulate your Life Force Energy. As I recall these workshops are obscenely expensive, and the word "touch" is misleading, as is the word "quantum". I can't bring myself to open the URL posted on the ad. But it's http://fullyenergized.byregion.net.
This just keeps getting better! The next page is also ads, er, newsbriefs, and a big ad on the side as well. Let's start with the ad. It's for Ahara Rasa Ayurvedic Centre, which is the first Ayurvedic center in my city & the first supply store in the Northwest. Horray? They offer, in addition to Ayurveda (which is a traditional Indian system, and therefore white people like it because of the Secret Eastern Wisdom trope), acupuncture (other Secret Eastern Wisdom), yoga (more Secret Eastern Wisdom...), massage, and cranialsacral therapy (homegrown bullshit). Their ad is littered with "holistic" and "wellness: and herbs, oh my. They also advertise prenatal and postpartum specialists, which worries me because a growing fetus does not need your veta, pitta, and kapha to be balanced. They need you to eat damn food and be getting really real prenatal care.
You know how sometimes ads don't sound quacky, per se? But they have dogwhistle words that are highly associated with woo? That's what's going on in one of the "newsbriefs". On the surface, a couple's workshop to get past combative dynamics before they come habit sounds pretty sound. Then you read closer: it's called Creating Mindful Relationships, which could go either way. The therapist is going to bring "freshness and purpose" to your relationship. Purpose? Ummm...keep reading..ENHANCE PRESENCE AND *RAISE THE VIBRATION*. WHAT? Raise. The. Vibration. No. That doesn't mean anything, or if it does, it doesn't mean anything people tend to do in a group session with a therapist present. Raise the vibration at home, if that's your thing, and if you need couple's counseling go to someone who can reality.
The last ad on page 10 is where I am going to stop for now. I am not sure whether to laugh or cry or shake my head. It's for a workshop "Communing with your Moon Cycle". People who menstruate, learn to love your period! Tantric Yoginis and Taoists and other Ancient Wise People knew the mystic secrets of bleeding! It's not a curse! Don't take Midol, celebrate dammit! I don't care, K, that you have endometriosis that makes you want to die, you just aren't in touch enough with your moon cycle! There's a yoga teacher happy to teach you how to love it! Just give her money and this lady will teach you how to not cramp and how to unleash the potential of your womb! Pay attention to your girlbits and they won't cramp and demand attention! This magic--er, ancient wisdom--uses aromatherapy (smells nice, does not actually do jack for the addressed issues) and energetic sharing (pass your aura this way! Let's trade them for a while. Oh shit I got someone else's energetic arm) and yoga (do yoga! cure endometriosis! Maybe that gynecologist had been to one of these workshops?). Surely the small group bonding is just a small part of feeling better? It's the spendy workshop part that's actually effective.
Aromatherapy, yoga, and energetic sharing for cramps and PMS? Really?
Yeah ok I can't do any more. My reality based brain is hurting. More. Later. But ohmigawd WHY? The credulity, it burns...
Monday, May 6, 2013
Classic Neurodivergence: The Cancer Comparison. AGAIN.
This is a new thing I'm doing, where I go back through my previous blog & post shit that is still relevant in its original form. I don't have the spoons to spit out content all the time, & some stuff I have been saying for way. too. long.
Original publication date of this one? May 9, 2006. Almost exactly 7 years ago.
"Like cancer, autism is probably many diseases with many causes". (Time, May 8 2006)
Mkay. I have a few problems with that statement. First, I do not have a disease. Second, the comparison is crap. Not the "many causes" part-the part where they put a neurological difference in the same realm as a deadly disease. It's also disrespectful, but I'll get to that after the bit about suggesting alternatives to the c-word.
For all journalists writing about autism: here is a list of conditions that are much more similar in cause and how much they can screw up your life (i.e. none of them are intrinsically deadly, though a lot of people have been killed for being autistic and for some of these other conditions too):
migraines
epilepsy
depression
ADHD
bipolar
motor difficulties (fine & gross, includes mobility)
arthritis
genius
mental retardation
learning disabilities
and probably many many others. Things that don't cause death. This list is not exhaustive.
Now, why I feel the autism/cancer comparison is disrespectful. First, it's disrespectful to autistic people. We don't have something growing in us attempting to kill us. We don't have a "devastating disease" which, let's face it, cancer usually is. We don't require painful chemotherapy to stay alive. The cancer comparison is nothing but lazy writing and a way to promote funding to people trying to get rid of us.
You know who else it disrespects? People affected by cancer. Ask anyone who lost a child to cancer-they'd have that child back, autistic, cognitively challenged, it wouldn't matter. Their child would be changed (in some cases almost to someone not the kid they remembered) but they would have their baby back. Ask anyone going through chemotherapy if there's anything worse than this. Hell no. Cancer is expensive, cancer is exhausting, and cancer KILLS. Give the families a little respect. Give the people who actually HAVE cancer a little respect.
Is it really that hard to respect autistics? And families dealing with cancer? Or are we just having a vocabulary failure by all our journalists at once? Regardless of the cause, time to fix it. Get Google Health (it's the handy directory). And an apology wouldn't be overdoing it either.
The Mothers On A Mission for Hysteria* do this too, but asking reasonable comparisons of them just gets you physically attacked. We can expect, request, and even get journalists to change. Extremists, they don't. They aren't worth my effort.
*note from the future: I would no longer use the word "hysteria", instead go with "irrational fear" or somesuch. But unaltered content is unaltered.
Wednesday, May 1, 2013
Kickin it Old School for BADD 2013
I don't have the spoons to put together a new post for BADD, and it's late in the day, really late in the day.
But I've been doing BADD since, um, forever. My old blog where I started doing it is no longer available to anyone but me. So here is a vintage post that still applies way too much.
From 2010: "The Little Things. They Add Up. Stoppit" (or, microaggressions, but I didn't know that word then).
Those little things your attitudes about people like me, about what people like me, about what those other disabled people are like, that lead you to do things for me, for other people like me, to say things that you think are complementary comparisons to me. They aren't compliments. They aren't favors. They're symptoms of ableism. They make me uncomfortable. That silence isn't assent. It isn't consent. It's me not knowing how to stand up for me and my community through the constant fog of hurtful, mislead attitudes.
Please don't tell me I seem normal-just-weird. I don't. I am not. If all the calculations my brain did to look what you call normal-just-weird were printed out, I'd slaughter a rainforest in a week. It's exhausting. I don't even want to be normal. It's erasing who I am to say I'm almost a shallow imitation of something I don't wish to be. The workarounds are to make my life easier--it's a choice between doing them & having the life and appearance I do now, and not doing them and I don't even know, I've been doing them for so long. Yes, I know when I describe how I understand speech it sounds like a lot of work. It IS a lot of work. That's how my brain works. I can't tell if you're trying to understand, or trying to tell me I Am Doing It Wrong. Don't tell me I Am Doing It Wrong. It's been my brain for a long time.
Don't tell me things aren't or weren't that bad. That surely I am or was exaggerating. I hate awareness for this. I hate "kids will be kids" for this. I hate the culture of the sainted martyr parents for this. Fuck you with a rake, it can be, was, and the global situation absolutely is that bad. I have a pretty awesome life right now, yes. I'm delighted you think I am fantastic and well adjusted and I quite agree. That doesn't mean that the situation at large, childhood, adolescence, earlier adulthood weren't absolute rainstorms of shit.
Don't fucking call me an inspiration either. My name had best not be in the same sentence as that word if you wish to remain friends. I'm not an inspiration. I'm a person. Cliffs and waves and sunsets inspire. I'm just stubborn and wish to live my life as I see fit. That's not inspiring when you do it, and it isn't inspiring when I do it either.
Medical professionals: don't talk to be like I'm an adult before you notice my medicalert and like I'm 5 after. Nowhere on there does it say "words of one syllable". It tells you things that effect how I communicate and can kill me. Like when you stabbed me three times and I started shaking and not being able to focus, that didn't mean talk to me like a toddler, it meant go get some prednisone. Just so you know. If you don't know what adrenal insufficiency is, you could have asked.
People in general, stop assuming my friends aren't really my friends. They are. It's not some great act of charity to hang out with me and stuff. Nor are they there to translate Real Human to Kassianese. I may not look at you. I still LISTEN. I can probably hear you further away than you'd ever consider thinking about. I like to think that as really real grownups people can, in fact, get past the whole different body language thing. ZOMG PEOPLE ARE DIFFERENT.
Also. Please stop condescending to me about my job. I like it. You don't have to do it. I do it. I love what I do. I choose to do it because I am good at it. Yes, it is a real job. No, it isn't volunteer, people are actually paid to do what I do. You have to get certified and everything! Yes, it is my real job. And yes, I could do other real jobs, but I like mine and there is nothing wrong with that.
I do not want to be miraculously cured...no, making baby steps towards access is not, in fact, doing me a favor, but being decent and babysteps towards following the ADA...
Annnd in spite of all your ableism fail, humans I know, I actually really do like you. It hits me in the gut every time you do this stuff, because it seems out of place, what with the whole treating me like a human being thing. Stoppit already.
But I've been doing BADD since, um, forever. My old blog where I started doing it is no longer available to anyone but me. So here is a vintage post that still applies way too much.
From 2010: "The Little Things. They Add Up. Stoppit" (or, microaggressions, but I didn't know that word then).
Those little things your attitudes about people like me, about what people like me, about what those other disabled people are like, that lead you to do things for me, for other people like me, to say things that you think are complementary comparisons to me. They aren't compliments. They aren't favors. They're symptoms of ableism. They make me uncomfortable. That silence isn't assent. It isn't consent. It's me not knowing how to stand up for me and my community through the constant fog of hurtful, mislead attitudes.
Please don't tell me I seem normal-just-weird. I don't. I am not. If all the calculations my brain did to look what you call normal-just-weird were printed out, I'd slaughter a rainforest in a week. It's exhausting. I don't even want to be normal. It's erasing who I am to say I'm almost a shallow imitation of something I don't wish to be. The workarounds are to make my life easier--it's a choice between doing them & having the life and appearance I do now, and not doing them and I don't even know, I've been doing them for so long. Yes, I know when I describe how I understand speech it sounds like a lot of work. It IS a lot of work. That's how my brain works. I can't tell if you're trying to understand, or trying to tell me I Am Doing It Wrong. Don't tell me I Am Doing It Wrong. It's been my brain for a long time.
Don't tell me things aren't or weren't that bad. That surely I am or was exaggerating. I hate awareness for this. I hate "kids will be kids" for this. I hate the culture of the sainted martyr parents for this. Fuck you with a rake, it can be, was, and the global situation absolutely is that bad. I have a pretty awesome life right now, yes. I'm delighted you think I am fantastic and well adjusted and I quite agree. That doesn't mean that the situation at large, childhood, adolescence, earlier adulthood weren't absolute rainstorms of shit.
Don't fucking call me an inspiration either. My name had best not be in the same sentence as that word if you wish to remain friends. I'm not an inspiration. I'm a person. Cliffs and waves and sunsets inspire. I'm just stubborn and wish to live my life as I see fit. That's not inspiring when you do it, and it isn't inspiring when I do it either.
Medical professionals: don't talk to be like I'm an adult before you notice my medicalert and like I'm 5 after. Nowhere on there does it say "words of one syllable". It tells you things that effect how I communicate and can kill me. Like when you stabbed me three times and I started shaking and not being able to focus, that didn't mean talk to me like a toddler, it meant go get some prednisone. Just so you know. If you don't know what adrenal insufficiency is, you could have asked.
People in general, stop assuming my friends aren't really my friends. They are. It's not some great act of charity to hang out with me and stuff. Nor are they there to translate Real Human to Kassianese. I may not look at you. I still LISTEN. I can probably hear you further away than you'd ever consider thinking about. I like to think that as really real grownups people can, in fact, get past the whole different body language thing. ZOMG PEOPLE ARE DIFFERENT.
Also. Please stop condescending to me about my job. I like it. You don't have to do it. I do it. I love what I do. I choose to do it because I am good at it. Yes, it is a real job. No, it isn't volunteer, people are actually paid to do what I do. You have to get certified and everything! Yes, it is my real job. And yes, I could do other real jobs, but I like mine and there is nothing wrong with that.
I do not want to be miraculously cured...no, making baby steps towards access is not, in fact, doing me a favor, but being decent and babysteps towards following the ADA...
Annnd in spite of all your ableism fail, humans I know, I actually really do like you. It hits me in the gut every time you do this stuff, because it seems out of place, what with the whole treating me like a human being thing. Stoppit already.