Wednesday, April 9, 2014

Save Ryan White Part D Flashblog

To be honest, I just learned about the Ryan White Medicaid waiver recently--because folks who make laws are trying to defund it. As soon as I learned that, and what the waiver is, I was horrified. This waiver is not for the direct cost of HIV medication and treatment, it's for the other stuff.

This is a thing people don't seem to grok about chronic illness: managing it is a lot of work. I do not have intimate experience of managing HIV, but I manage other chronic illnesses, & I'm going to talk about that because some things do translate across illnesses.

People have this idea that if you have a chronic illness, you take your medication and are pretty much fine. The more nuanced folks will realize that your fine and everyone else's fine are a bit different, or that "fine" is relative, but people focus on the medications that directly deal with the chronic condition. That isn't even a small percentage. There is so much more.

Part of living with chronic illness is doctor's appointments. There's the appointments for regular maintinance of the condition, even when you feel fine--there may be blood tests, medication adjustments, other procedures. There's more urgent appointments when symptoms of the chronic illness flare up, and these almost always involve testing or medication changes or referral to yet another doctor in case something in another system is wrong. There's primary care appointments when you're sick, because for many of us with chronic illness, getting "a cold" or "the flu" or what have you is has the potential to cause a lot of problems.

One of the services Ryan White Part D covers is transportation for HIV patients. When I go to the neurologist it can be a whole day--hour on the bus, half hour of paperwork, half hour appointment, wait in the lab for half an hour, 15 minutes for the blood draw, hour and a half to the pharmacy, 20 minute wait there, half hour home. See, poor people ride the bus. Chronically ill folks are disproportionately poor, and recipients of this waiver are disproportionately women and children of color (who are also disproportionately living in poverty). A chronically ill woman with kids, or a mother of a chronically ill child? It isn't right to ask her to spend all day on the bus. Cutting services that allow her to spend time with her children isn't acceptable.

And sometimes transport is a need. A legitimate need. It is, in fact, possible to be too sick to go to the doctor. That was me last week. If the bus is the only option, getting to the doctors who take medicaid can be a trek. Making that trek while acutely ill on top of chronic illnesses exascerbated by viral or bacterial infections? Usually if I'm afraid I'll collapse on the bus or not get home, I take my chances. A parent doesn't have that option. A parent of a chronically ill child has a much more difficult call than I did in that situation--she wants what is best for her baby, her child. But taking a sick kid on the bus is miserable, the actual worst. The people who think cutting this program is a bright idea may say "take a cab" but that isn't realistic for many many people. That's not an acceptable solution.

Nor is cutting child care funding. I've never taken a child to my doctor appointments, but I have been taken to my mother's & my siblings' doctor appointments, and they went to mine. It is boring for the children who aren't directly being examined, and it is much harder for the adults to discuss the things that the appointment is actually about.

The programs provided by this waiver allow women and children to do more with their time and energy than manage HIV. This is important. Chronic illness is scary. It's so much harder to deal with when everything is sitting at doctors and riding the bus and playing alone because today's trips knocked mommy out (peanut butter sandwiches for dinner, because little kids can make those & mom is too tired to make dinner, even if she really wants to). The programs allow families to have a life outside of managing the illness--to have an actual family life. To have those moments of silliness. To have time and energy to enjoy each other.

"Not cutting medication funding" is nowhere near enough. It is a beginning but it's nothing to be proud of. It's not even the minimum of decency. Families dealing with HIV & getting services through this waiver deserve the help. They deserve to know more than daily management of the disease. Lending a hand shouldn't be too much to ask, not even a little.

Saturday, March 29, 2014

Conditioned eye contact.

Tw:  forced eye contact, restraint & other abusive 'treatment' descriptions

I can remember the last few times I made true eye contact, as clear as a snapshot.

-I was too distressed to make words happen and no one around knew sign. Eyes wildly snapped from person to person, looking for someone who could read my mind.

-I was in the ER getting stitches on my finger, which I had accidentally locked in a car door. I told them to not tell me when they were sticking me with the needles. They told me. Eyes flew to those of the person with me.

-One of those folks who thinks boundaries don't apply to him was getting too close and too cozy on the bus. Again, probing for someone who could recognize my distress.

-Someone was threatening violence in my direction at a thing I used to do, and I was meeting with one of the folks who had authority. His words on the experience are "please stop trying to set me on fire with your mind."

The elements of these scenarios are the same. Something is happening. I do not like it. I do not like it at all, and want it to stop immediately. Yelling and swearing has not worked. I can't hit it or kick it or pretend it doesn't exist. Those strategies have failed or have a 99.9999% chance of failing based on pattern data from years of experiences.

But eye contact makes them stop doing the unpleasant thing.

This doesn't make sense, does it? You've heard that eye contact is about sharing and social referencing and subtle messages and cues being sent among communicative partners. That's not what this is at all! This is the sledgehammer. This is the safeword, if you will, the "this stops now it has to it has to it has to make it stop nownownownownow no matter what".

Where did I get this idea? Therapy. That's where.

When I was a very small little child, the first thing they tried to get me to do was "look at me". Now, if I was a small child now they'd be still coercing looking at them. The new and improved way of forcing eye contact is to hold a desirable item between the adult's eyes and then give it to the small child when they look at it. This is still gross.

Back in my day, however, it was all out war. They would grab your face, they'd hold your hands down, they'd pretty much sit on you. It was a full out wrestling match until you submitted and looked them in the eye. Then, they immediately stopped. They immediately let go of your face or your hands or stopped sitting on your or stopped holding your shoulders so hard that the bones ground or what have you.

I was small. Hitting didn't work (I tried). Kicking was a no. Headbutting only worked once, biting was iffy. Covering my face got my hands dragged into my lap and held there. Dumping the chair and running was only a few seconds reprieve and led to the least comfortable hold ever. They had no compunctions about prying my eyes open when I squeezed them shut as tight as I could. No boundary violations were out of bounds. The only way to make the awful stop was to look in their eyes.

Reality land does not, in fact work that way. Eye contact is not the way to make things stop. People who know me understand that it means "something that is happening needs to not be happening right. now." Most people don't know that. People who only sort of know me can grasp that it's bad (see: "stop trying to set me on fire with your mind") but they don't know what it means. Strangers take eye contact to mean the opposite of what it does.

My brain knows that for most people a straight in the eyes stare is not the signal for "something needs to stop right. now." but it isn't that easy. One of the deepest conditioned things I have is "eye contact is giving in. If you do that, the bad will stop." This is irrational and untrue and the world doesn't work that way. It's deep, though, as the first and most consistent of the wrestling matches I had with adults as a small child.

This isn't what they thought they were teaching me. They claimed to be teaching me all sorts of things about eye contact. They didn't though. They wrestled me to the ground over and over to grind a lie into my head.

Wednesday, February 26, 2014

Skepticism's ableism problem again: Skepchick et cetera.

I'm a bit late to the blogging party on this one, which is ironic because it's all my fault that the Skepchicks are sadpants because their ableism was called as much.

I am not linking to their fuckups or to the posts that are followup fuckups because I don't give traffic to ableists. It is not a thing I do. Especially as it requires looking shit up again and I am tired and, well, late to my own party.

I don't always go to war with organizations, but when I do it's on accident because I mistakenly thought they gave a shit about being better people.

So. Skepchick authors (multiple!) collaborated on a sarcastic valentine to the jackasses who DDOS'd their site. Great! I love sarcasm directed at asshats!

Oh wait except their message had nothing to do whatsoever with how people who shout and holler about FREE SPEECH are big fucking hypocrites when they DDOS a site to shut them up. It was all "stupidest motherfucker" and "fucking idiot" and "I am truly impressed you remember to breathe".

Yeah.

"You are so cognitively impaired it is amazing that you can even handle autonomic functions" is one of the most revolting things I have heard in a while. And from people who pretend to be for equality it is even worse. They're oh so for social justice, except their go to insult is...still people like me.

So I message Surly Amy on twitter (because she illustrated it. Also I met her at the first geek girl con, and bought several surlyramics, which I can't even look at without gagging now) and also at the whole collective. Enter the white able tears! Like, right from the get go. My favorite was the "well you did it too!" when I called it an astonishing lack of thought.

Except saying someone didn't think isn't at all disparaging their ability. It's commenting on their action (lack of action). Their entire damn collective's lack of action, because that should not have gotten past all of them.

White able woman tears got more dramatic from this point. Rebecca Watson, who caught enormous amounts of hate for pointing out that cornering a woman in an elevator at 3AM when she had said she didn't want to be hit on is not cool, went full out double triple down ablesplainer nightmare. And she made it about the word "stupid". Now, the word "stupid" is ableist. However, that is not what I initially most strenuously objected to.

This is disingenuous as fuck, Ms Watson. I know that people like me are your go to insult, but your tactic is transparent: make it about the most pervasive word so that your critics look ridiculous to the majority, and ignore the entirety of your heinous behavior.

And then of course skeptics, being oh so skeptical, decided it was a false flag operation from various nasty corners of the internet. Never mind that the initial callout was from my personal twitter (with a picture and years of history, and a link to this blog with more years of history, also my name...which also, um, years of history). Obviously trolls.

No skepticism at all there, folks. Occam's Razor apparently clearly dictates that I set up this blog, my twitter, my speaking, authoring, et cetera solely to troll Amy, Elyse, Rebecca, etc. I've done all my activism, clearly, just so that the day would come when I could persecute them (for things they actually did! that actually suck!) as a troll. Yep. Or at least that's what they and their syncophants came up with.

Damn, if that is doing skepticism correctly, I am glad to be doing it wrong, since it is completely fucking nonsensical. They aren't worth that kind of effort, frankly, and it's really quite bullshit to suggest that my positions are anything but sincere. I have dealt with phenomenal amounts of shit for my positions.

So. Yeah. Skepticism fail. Research fail. Too busy crying privileged tears to think outside themselves.

So. That was a problem. But there was also a problem from someone who tries to get things usually, LousyCanuck/Jason Thibeault. It wasn't as vile as the Skepchicks going out of their way to be oppressive, and I've been trying to word it since we conversed on twitter (a truly exhausting exchange).

Ok, so part the first. "I don't think stupid is always a slur but I don't use it because it's imprecise" is doing the better thing for not exactly great reasons. Disabled people say that stupid is a slur. So you should believe the folks who say that. Yes, it is imprecise (much as 'nice' is) but I should hope that not hurting people is a high priority.

Also, um, citation needed for not always a slur. Disabled people are held to ridiculously high standards of evidence regarding things being hurtful where folks--the same folks--will take the word of other marginalized people. So this is not exactly ok.

The thing I really take issue with, though, happened in the twitter conversation itself. It was truly infuriating, in that Jason said it and that he seemed to think it was a reasonable explanation for people being intentionally oppressive assholes and that he didn't seem to be understanding why it's not.

He told me that anti SJ people will take ridiculous positions of made up outrage to try to make social justice look ridiculous, & so the Skepchicks clearly thought that's what was happening, and therefore they doubled down.

No.

No.

This is not ok.

Firstly, this says that y'all think disability rights is ridiculous. That no one would actually sincerely be against ableism. This is especially problematic in skeptic spaces, where "but having cognitive problems is objectively bad!" is such a common excuse for ableism. Fucking own your ableism, folks, say "yeah I am a bigot". But don't expect disabled people to be ok with you thinking our quest for rights is so absurd that mistaking us for trolls is the Occam's Razor Solution.

That's bigotry and it is wrong and you are not for social justice if that's your deal.

Secondly, this is again holding us to a much higher standard than it is them. See the section, above, with how very difficult it is to find my over a decade of holding strong disability rights positions. Why the hell do they not have to do research, but we're expected to be ok with them being flagrantly nasty because they came to the wrong conclusion?

Also it's excusing their behavior. Don't do that guys. If someone fucks up, hold them accountable. Consistently people have been feeling sooo bad for them because I publicly said I'm probably getting rid of my surlies. Oh. No. The. Humanity. But no one cares about the people actually hurt by their attitude. It's all about how sadpants they are that a few people called them on it.

There is no excuse. None. It doesn't matter if they thought we were...I can't even think of something more ridiculous than what they actually think, actually. This is indefensible.

This was not ok.

So, yet another disappointing organization that I thought I could respect. People who, it turns out, don't think I am a person. Who think I am their go to insult. Who think that we are so much non-people that their upset at being called out for being oppressive matters more than the dehumanization and such they are actually inflicting on us.

Feminism & skepticism need to clean their damn houses. I don't see this happening. Have fun with your able woman tears, y'all. I'm taking my ball & going to movements that think I'm a person.

Friday, February 14, 2014

Embracing love in face of fear

I hadn't planned on doing a second post for the Love Not Fear flashblog but this concept wouldn't get out of my head so here it is.

Long time readers and friends (and probably people who don't like me too) will know that I used to be a gymnast, that I play around on high powered trampolines when I can, that I have jumped off a cliff into freezing cold water (and can't wait to do it again), that I climb rocks, and possibly that jumping out of a plane and similar things are my entire bucket list.

They may also know that because of medical conditions, the risk of losing awareness and control are greater for me, and also that the risks that come with injury are greater for me.

What people tend to assume from this is that I don't feel fear. And that? Is not true. When I was a gymnast, I felt afraid of new skills. There are things I could do that I was apprehensive of every single time. Climbing challenging walls has moments of apprehension no matter how many times I climb the route and no matter how much I trust the person at the bottom. Jumping into Crater Lake? Was scary every single time. Skydiving terrifies me.

But I can choose to turn into that fear. I can choose to run away from it or run with it. I can fight it or I can embrace it.

Embracing the fear? It's odd. There's this thing that happens when you say "This scares me but I am opening up to new ways of looking at it. I am doing it anyway." I can run my Litany Against Fear and do the thing anyway, and find something besides terror, besides the mind-killer.

I can embrace the fear and find joy. I can see the fear for what it is and yet also find joy, find love. I can be afraid without acting fearful. Fearfulness turns defensive turns angry. I know this because there are fears that cannot be embraced, that are necessary, with little risk of reward at the end.

Many, though, aren't. And I will turn to those fears, like I spent years doing in the gym, like I do to jump off high things, like I do to climb, to try new things, to meet new people, to advocate even. To find love. To promote love.

If you have an Autistic family member, I encourage you, too, to look down the cliff at the cold lake below, or at the balance beam that is just 4" wide, or at the trampoline that can throw you a story high, or out of the plane. Whichever metaphor works for you. I encourage you to look. And then I encourage you to run with your fear. And jump. Or climb. Embrace it.

And by not letting fear defeat you, you can find joy and you can find love. It is worth it. We are worth it. You owe it to your loved one and to yourself to choose love.

Monday, February 10, 2014

Litany Against Fear/Litany for Love

For the Love Not Fear flashblog. With thanks to Frank Herbert for the Litany Against Fear used here.
 
I must not fear. 
Every time I have these conversations, the ones that devolve into hate, I remember: I am moved by love.
Fear is the mind-killer. 
They are afraid and fear is turning to anger and anger is turning to hate, but I can be fierce with love for their kids, for Autistics present, past, future.

Fear is the little-death that brings total obliteration. 
Standing strong in the face of the wall of dehumanizing hatred is an act of love. My love for my community is my shield and my strength, and it is tempered by ice and by fire.
I will face my fear.
I will stand with love. I am standing for love.
I will permit it to pass over me and through me. 
This is for their children. This is for those who I will know in the future. Who I love without having met yet. For those I know now, and love with such ferocity there are not words for it. 
The anger and hate hurts, but it will not break me. 

And when it has gone past me I will turn to see its path. 
Change is coming. Change has started and more will come, like a wave or a landslide or even a waterfall. 

Where the fear has gone there will be nothing...
Our efforts, our love, is not in vain. The children and adults we are fighting for will feel the ripples from our work, even if we never meet them.
Only I will remain.
At the end of the day, love will prevail.
Fierce, ferocious, fiery, protective, strong, squishy, gentle, love.

Sunday, February 2, 2014

Elegy for a friendship

Several months ago I had a hard time, neuropsychologically--I was run up into my breaking point & had started to push. I wrote a bit about causes and contributing factors, but not much at all about what was actually happening in my life right that moment.

One thing that happened in my life at that time is a fracturing of one of my most precious and treasured friendships. I don't make friends easily, especially not the kind of friends who are like family is supposed to be. I'm not the easiest person to get to know, and I know where I stand on things (and what stances are mutually incompatable in a friend), and I have complicated access needs ("do without" is territory in which no potential friend would even consider treading). So--friend friends? Are to be treasured.

When something happens with one of these rare gems of people, then, it's kind of world-shakingly bad. It's hard to recover from. Change is bad, especially unexpected unpleasant change with no redeeming value. Something that falling into my "actually trustable and safe" ctegory requires is massive predictability, so it's more shattering than when someone merely a friendly acquaintence does the exact same thing.

So. Yeah. a thing happened. Namely, someone I literally trusted with my life (and a key to my apartment, and stories that will certainly never be published here, and literally I do mean with my life) called Purkinje an ableist slur. That isn't ok. It isn't ok when I am at my best and it isn't ok when I am at the edge, dropping things off and considering racing them to the bottom. That's epically bad timing, yes, but wanting someone out of my sight and/or life for that is consistent across all my states of being.

As is consistent with my character, I wanted my friend to fuck off and not fuck back on again. Or maybe fuck back on again eventually but I was pretty devestated. I'm not convinced now that the "never fuck back on again" still stands.

I miss my friendship and I miss my friend. Our conversations, inside jokes, knowing that trust is a given, that obviously at least someone is on my side, that I am in fact making sense (or not) and that any not understanding is genuine rather than obfuscation,  our silly traditions. There's a bit empty hole in my soul where this relationship used to be, and it's a hole for the kind of dynamic that is a once-in-a-lifetime-if-you-re-very-lucky deal.

I care for this person enough to not name them here, not without permission, that isn't what I want to do at all. That seems disrespectful, somehow. I like to think that my principles, like "I will not name non publicish people on my blog without their permission and a fucking good reason" and "don't fucking use dehumanizing ableist language and expect to get away with it" are part of my...charm? and part of why our friendship was what it was. The double edged sword of that is that some principles do not yield and that might be part of why it's broken, shattered, gone.

I've thought really hard about that. I'm not sorry that I'm like that, not really--but I am sad, a little, that I'm not sorry that I'm like that? Most of the things that clash with my principles are "and nothing of value was lost" situations.

This particular friendship, though, was of immeasurable value. The illusion that even someone disabled and difficult-ass like me can have that sort of friendship, can be a real person in all the ways, can have the kind of friendship most people never experience, that was priceless. But that's the big overall thing. It's the little daily things, the components, the inside jokes and the things that make other people in public go "oh my god..." and the traditions and all of it, the things that are observable but that there's no words for. There is nothing in the universe that pays for that loss. Nothing.

If this person texted me tomorrow, I don't know if it could ever be the same again ever. But I so want a time machine to somehow make that moment have never happened. I miss everything. I miss the hard and the easy, the silly and the serious, the venting, the hugs.

I miss my friendship, & I miss my friend.

For clarity: this really had nothing whatsoever to do with the mentioned having-a-hard-time, except for happening at chronologically the same time. I was staring at the abyss before this happened. This is not "and this happened and therefore lost it" but "I was already not doing well and then bad timing also awful and I has teh sads"

Monday, November 18, 2013

What autism really is.

So Suzanne Wright from Autism$peaks sent out more of the same hatemongering that was tired before her grandson was even born, about how autism is terrible because the faaaaaaaaaaaamilies and we might eat food from the fridge or something and that's the worst thing ever.

That is not what autism is.

This is autism:

one very fair skinned female presenting person with light brown hair & a pink hoodie and a pink and purple haired fair skinned person with glasses, an orange shirt, and a white shoulder riding cat

Autism is friendship, the kind you can only have when you meet someone who is like you. Allistic people don't so much understand what that is, because they expect that most people are on their wavelength. But Autistic people know how special that is, because it is rare and it is precious. Someone who understands intuitively, who speaks your language, is worth their weight in something way more valuable than gold.

And autism is community that comes together. There's this idea that we can't do that, but that idea is wrong. Never have I ever seen another community that takes care of its own so much. We have our issues, as all communities do, but we also have fierce loyalty and ferociously fight for and care for our own. We know what it is to not have that. Again, we know how beautiful that is once we find it.


Autism is adventure. Or craving it at least. Jumping into that freezing cold water because it was there. And then jumping in again and again because it was freezing but it was a delight every single time. It may not be the normal thing to do, but it was better than normal. It was exhilarating.

Jumping into that water? I felt more alive than I think most people ever do. It was just me, the air, then the water. The sensation of my stomach rising? Stopped time until the water woke me up. It was actual perfection in an experience.

black and white photo of a dark haired fair skinned person doing a leap. their back foot is up by their head and their front knee is bent at an acute angle

Autism is focus. This leap is called a double stag. My focus was right on the sole of my foot, visually speaking. Internally speaking it was only on what I was doing. There was no thought as traditionally described. There was me, music, the mat, and movement. That's it. I can do that. I cannot meditate in the usual sense, but I can become one with movement. Everything else goes away.

So it is when I am focusing on something that I love. The way I love? It is deep. Autism is deep love. People write it off as special interest or obsession, but even if it's not something I can excel at, I can excel at loving what I love, loving what I do, loving who I love. Autism is being able to be consumed by love and interest, it is giving 100% because it is an insult to the thing one loves to give any less. Autism is going big or going home.

Autism is finding myself and losing everything else while jumping, flipping, spinning. And this is the best thing ever.

dark haired fair skinned adult female presenting person and dark haired fairer skinned boy presenting person on a couch. they are smiling and the boy is pressing his forehead and shoulder into the adult

And now we are back to autism is love and community. Autism is also sharing. Autism is knowing people because of autism. My young friend, Leo of Squidalicious fame, shared with me. He shared his iPad and his stims and his love. And he and his family are just a few of the many people I care about deeply who I would not have met if there was no such thing as autism.

No one ever said that being Autistic is easy. But we do say that it's worth it. We're okay. We love and deserve to be loved.