Crocheter. Cat person. Originally from Redwood Terrace, and my heart has never left. Based more in sensory reality than language or ideas. Very Hufflepuff. Chaotic-good.
Catching Elephant is a theme by Andy Taylor
“What happened to Andre McCollins is still legal. It shouldn’t be. It wouldn’t be legal for anyone else — not convicted terrorists, not captured enemy combatants, not anybody. And it shouldn’t be: torture should not be legal. But it happens every day to disabled people.”
Article by Cal Montgomery, please pass along far and wide.
2 years after the McCollins trial, the FDA took testimony on the practice of contingent electric shock as a way of controlling disabled people. Advocate after advocate urged them to ban the discredited and abusive practice, pointing to the fact that the United Nations regards the practice as torture. And the FDA seemed to be listening. In 2016, it was reported that the regulations needed to stop JRC from doing this to people had been drafted.
And then … nothing. The Obama administration declined to stop this. The Trump administration has so far refused to stop it as well.
Today disabled advocates and their supporters are continuing to demand that the FDA release the regulations, ban what happened to Andre McCollins, and move toward a world in which people with intellectual and developmental disabilities who need supportive services are able to access services that they themselves find supportive and that promote their ability to live the kinds of lives they want for themselves.
For more information: http://autistichoya.net/judge-rotenberg-center
The FDA can be contacted by telephone at 1-888-INFO-FDA (1-888-463-6332).
A tiny seed of redwood sorrel, slumbering in its soil nest
Stones in its lowest spots say to grow upward
Silent hope for something sorrel can’t explain
Stirrings that see it slip from the soil, seeking sun
Sun on the leaves sweet sugar within
Sorrel is social, surrounded by sorrel-friends
Redwood sorrel seeks solely to live in the light
Supported by soil, the sun in the sky shining down[Writing prompt - redwoods - provided by binghsien.]
And you can hear the redwood sorrel talking to each other. They are tiny plants. They look almost like clovers, but they are red on the bottom. They taste citrusy. But what is important is they live in big clumps, they can carpet the entire floor of a forest if given half the chance. And if you are really really quiet, and really really listen… listen with your whole body, not just your ears… then you can hear the way they talk to each other. They whisper. The wind whispers through them, even a slight breeze. Nobody pays them much notice, because they are on the ground, and everyone comes to see the redwoods. But next time you’re in the redwoods, listen to the redwood sorrel. It knows the secrets of the forest floor, of the soil it is so close to. Those are secrets worth learning.
…I seriously thought it meant an online record of a webmaster’s changes to a website. I had no idea it meant something else, would get shortened to ‘blog’, resembled a cross between a diary and a guestbook (anyone remember when guestbooks were the main way to communicate with website owners? anyone remember the Internet before websites? I swear I’m not that old but online eras are so short) and would take over the Internet.
Usually I hide when I don’t understand something. It’s instinctive. It’s how I got an expressive vocabulary much larger than receptive. But I’m trying to be honest when I really don’t know what a word means.
This one is pretty fucking serious. It’s not about voter fraud, it’s about shitcanning everyone’s ability and right to vote.
Instead of being elected by the people, Senators would be chosen by the State legislatures, guaranteeing that the majority party would pick Senators of their own party.
If there is a vacancy the Governor would appoint a Senator for the remainder of the term. The pick could not be changed by the legislature or the public.
State legislators can recall a Senator at any time.
.If successful, they will reverse one of the great strides toward democracy in American history: the 1913 decision to end the corrupt practice of letting state legislators barter off Senate seats in backroom deals with campaign donors and lobbyists.
It seems gerrymandering the House is not enough for Republicans who want to completely shut out opposing voices. Yet, gerrymandering does fit with a long-term plan to turn America into a permanent single-party-rule nation.
With control of 32 state legislatures, the GOP would have an easy time hand-picking fascist-conservatives to fill up the senate.
I kneel in my garden
You bend over in yours
I am weeding zucchini
You are watering corn
Staff talk to each other
They talk to you and to me
You and I don’t talk to each other
But sideways-glancing, we see
[Image description: Large field, of plants, there’s a weeded spot that’s mostly just dirt, I’m kneeling down pulling weeds, you can’t really see my face.]
Most of my in-person social interaction works like this. It’s as much an artifact of the developmental disability system I am forced to live in to survive, as it is an artifact of anything particular about me or the woman I wrote this about, who I have only met in this kind of context.
I owe my life to the DD system. I have given up so much to survive the DD system even at its best. Neither of these things can be ignored. Everyone who uses this system to survive, gives up things you may not be able to imagine. This should not inspire pity or a sense of sad inevitability – “things have to be like this, it’s too bad” – but outrage and love and common humanity. This is an area where people don’t really differ from each other in anything but shape. Don’t kid yourself that we’re some kind of second-tier human beings who innately can take this because we’re not quite as real as you and don’t feel it. Most of us spend our whole lives shoving our humanity into boxes to survive and it’s never enough to please the forces that push us in that direction. We feel it. It always comes out in one way or another. All of us. Even those of us in hiding from ourselves.
I’m nervous about telling you the price we pay to be here. I feel like i’m revealing a dangerous secret. I feel like, in a system that is taking the place of something much worse, a system I need for survival, a system under threat right now, is not something I should be openly criticizing. But if it continues without change, with everyone simply saying we’re lucky it exists – which we are, but that’s not the whole story. And without people knowing the whole story, we try to cram our souls into boxes. Our souls eventually object.
Meanwhile we often try to connect with each other indirectly rather, as described in the poem.
[If you want more on why and how our souls object, see this post, It’s long. But thorough..]
She skated towards me wearing a red winter scarf. My feet were frozen to the ground. She waved her scarf in the air from a distance. It was the only thing with color in sight. Then it flew through the air and landed in my hands.
I clutched the scarf tight. I didn’t see but felt her fall. I didn’t see but felt life struggle to maintain itself, and fail. I didn’t understand. I never understood. I couldn’t make sense of anything anymore.
I never let go of the scarf. I unzipped myself and wrapped it around my heart. To keep peverything warm when nothing was certain. And then I cried until I thought I would never stop.
And I’ve tried to hide what is gone. But I’m not sure if it fools anyone. There are places we used to go, things I used to do, and they seem as dead as she is. Only sometimes I feel something squeeze my heart. And things pop into focus once again, in color.
I can’t tell you all of my wishes, because they are all in code. I can’t tell you what I can’t do anymore. It’s just one more room in the building, left blank and unexplored. I wish I was known for who I was and not for what I did. I can’t tell you what I’ve lost or what I’ve gained.
I can still see more than people want for me to see. I can still feel things deeper than people expect. What I can’t understand, I still can’t understand, only more. I still want things that can’t be named. I still can’t tell you any other way than this here, right now. What stays, what shifts, what’s changed.
If you wanted something different, I can’t help it. This is what you get. If you don’t understand, maybe it’s not here for understanding. I’m just exhausted, and didn’t have the energy to tell you the normal way. So I took what I had and I went where I could. And this is what you get.
Don’t tell me what I should have said. Chances are, I couldn’t. This is brain damage we’re talking about. It isn’t convenient. It doesn’t instantly vanish. If I could only tell you a tenth of it.
It’s hard to look around and see that nearly everything I used to pay attention to, is impossible to understand. It’s hard to know I can’t say anything unless it follows a particular pattern, like this does. I couldn’t say this part without all the rest before it. All the rest. Not something else. Something acceptable.
I’m scared and I couldn’t tell you why. It’s winter and the wind is blowing hair in my face. I’m glad I have the scarf around my heart. Otherwise I’d get lost in all the snow. Everything used to be familiar. Now there’s so much snow I can’t identify anything. Or not much of anything.
Please, something be familiar. Something be unfrozen. Something be other than white. I feel tiny, and I’m shaking, and I don’t remember anything. Not what I just said, not that you’re alive. In here, I don’t know you. I don’t know me. I don’t know anything.
But it always fades back. And there’s always more. And I always find myself writing this. To you. To who? To me. To they. I don’t know. All I know is I couldn’t have written this any other way. And maybe someone can even figure out what I meant. Because it’s in there. If you look in the right places, and with the right eye for the reality of one experience or another.
I am through, so I hope, sitting up all night with neon pink insects eating my eyelashes. Lying in a sunlit room with parts of me flying into the sky and back again. Night after night trying to avoid being flattened into a grid pattern and dissolved. In lots of pain. With lots of nausea. And I hope never to visit that realm again. A lioness carried me out.
Not that anyone noticed. They come in and change your IV bag and the hours between are left for you to lie still and drift into bizarre hallucinatory worlds that always have an undercurrent of hell on earth to them. They don’t check you for it. That’d take time. So of course they’re blindsided by my paranoia and then, after that was gone, sliding into the blank white snow everywhere. They only noticed what affected them.
I’m out. But it’s not over. And I wish I could tell you the things I can’t say or understand. But they’re just lost. And I get scared if they’re ever coming back. And this was the only way to tell you. So don’t ask it to be less roundabout or full of things that didn’t literally happen. Because right now that’s one thing I can’t do, can’t do at all. Don’t call this creative writing it’s the only damn writing I have at all this moment. And what I’ve done hurts like blinding colors in my eyes instead of a scarf warming my heart. If she’s dead or asleep, I can’t tell you, don’t know, but it hurts.
Found this. I wrote it while still mildly delirious after a 5-week hospital stay. Still think ti’s important. The rhythm of the words turns out to be a rhythm that was going through my head or on the TV or something at a certain point in my delirium.
Another appearance-related post My eyes are mostly dark green. With a small circle of brown in the center. Like this (yes I was opening my eyes wide so you can see them better):
Or this for a more fuzzy example:
With rare exceptions, people assume I have brown eyes, and sometimes argue with me at length about it. Sometimes if they get up close they’ll admit they’re hazel, sometimes they insist they have to be brown.
Most people are not red-green colorblind. What’s happening here?
Ok, so I’m a little bit sick of the “asexuality is no longer medicalized” attitude a lot of people have taken recently, specifically in regards to asexuality and HSDD.
So, yeah, asexuality was officially given an exception in the DSM-V.
That’s a huge step from before, when you could be diagnosed with HSDD simply for being asexual and having interpersonal difficulties because of it.
But, there’s still a couple problems.
1: The patient has to self identify as asexual. Combined with visibility issues, you may get people who feel “broken” and distressed because of their asexuality, people who may be okay with identifying as ace if they knew about it. That’s one of the reasons we need to keep fighting for visibility.
2. Here’s the kicker though. The asexuality exception is not included in the diagnostic criteria, but a different part of the text. The desk reference version, which is the smaller version most psychiatrists will use because the actual DSM is a monster of a book, only contains the diagnostic criteria. So, unless a doctor is very familiar with the update DSM, you could still be diagnosed despite identifying as asexual. Obviously, that’s a big fucking problem.
Now, wait up a second. The DSM is put out by the APA, an American organization.
So….it’s probably not used internationally. The international appx. equivalent to the DSM is the ICD (International Classification of Diseases). The current version is ICD-10, although ICD-11 appears to be poised to come out in 2018.
So, let’s explore HSDD in the ICD.
F52.0 Lack or loss of sexual desire
Loss of sexual desire is the principal problem and is not secondary to other sexual difficulties, such as erectile failure or dyspareunia. Lack of sexual desire does not preclude sexual enjoyment or arousal, but makes the initiation of sexual activity less likely.
Includes:
frigidity
hypoactive sexual desire disorder.
A disorder characterized by a recurrent or persistent lack of desire for sexual activity. The lack of sexual desire is not attributable to another psychiatric disorder or to the physiological effects of substance use or a general medical condition.
The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-IV TR)4 and the World Health Organization’s International Classifications of Disease-10 (ICD-10)5 established that the definition of hypoactive sexual desire disorder (HSDD) should include not only the lack or absence of sexual fantasies or desire for any form of sexual activity, but also the presence of personal distress and/or interpersonal difficulties.
So, I’m noticing a very distinct lack of the “asexuality exception” (yes I’m calling it that) in here. Combined with the “interpersonal difficulties” criterion, I’m not seeing much difference between this and the DSM IV.
Ok, so if an asexual were to get diagnosed, how do they treat it?
Some women also benefit from counseling or sex therapy. Specialists can help them cope with any past sexual trauma. They can help women improve their self-esteem and understand their relationships with their partners. Women can learn how to talk about sex with confidence and express their needs and concerns to their partners. They might also introduce ways to make intimacy a bigger priority – and more interesting.
The use of testosterone appears to have a direct role in sexual desire and has been shown to increase desire, but its long-term use is limited by potential side effects, including cardiovascular and liver dysfunction.
Antidepressants may help depression-related low desire, although many of these medications decrease sexual desire, at least initially.
Nonetheless, estrogens replacement therapy has been shown to correlate positively with sexual activity, enjoyment and fantasies.
When no causative medical disorder is found, individual or couples therapy is often recommended.
Yeah. So, my point here is not to freak anyone out (although I know I am a little bit). My point here is that while we should celebrate our victories, this is something that’s flown a little bit under the radar that we probably need to keep talking about, finding solutions for, and then campaigning about these issues.
If you’ve got more to add to this post, I’d love to see it. However, I am going to ask that we don’t discourse on this post. I know. I’m a discourse blog asking for no discourse. Just please, for once, let’s not.
Anyways. On that cheery note, I’m done.
Another thing to note, some non-american countries also use the DSM (Hi from Canada) but will often not update as fast as it is changed. Without outing anyone I do know of people who have been diagnosed with disorders removed from the DSM several years after the new DSM had been published, this difference often depends on the medical colleges in the country and other factors including money, and how standardized psychiatric care is in a region.
A step in the right direction? Sure
Making it safe for any individual Asexual person to say they are Asexual in front of a mental health professional? Nope not at all.
Updates to the DSM don’t always make it through the USA very fast even. Often an updated concept in the DSM or in psychiatry in general can take upwards of 20 years to really catch on large-scale. And there are always holdouts from earlier times. I’m autistic. In the mid-1990s I was undiagnosed with autism and rediagnosed with “psychotic since infancy schizophrenic since adolescence” by people who were very explicit I didn’t fit modern conceptions of schizophrenia. They blamed my mother. All of these views were quite typical of the 1970s and I found basically a description of everything they said about me and my mom in a book I think from 1971, by Frances Tustin about autism and childhood psychosis. Autism was considered one particular form of childhood psychosis at the time, but was thought by many to never involve losses of skills and to require a minimum (yes minimum, not maximum – these were very different times) IQ, among many other things. Anything else was described as infantile/childhood psychosis/schizophrenia. They used the DSM-IV officially to diagnose me (in a way that nobody should ever use to diagnose anyone – they listed each criterion and made me describe myself in a way that fit it) but clearly were working from the 1971 definitions of things. Psychosis is impossible to diagnose in an infant, and references to infantile psychosis are nearly always a coded reference to developmental disabilities like autism. This is because, while most people think of psychosis as a loss of contact with reality such as delusions and hallucinations, there’s also a bunch of other traits that have long been associated with it that have huge overlap with autism which is why for awhile (I don’t know if still) you were not allowed to diagnose schizophrenia in an autistic person except under specific circumstances. Because otherwise nearly all autistic people would meet the criteria. It’s far more complicated than this, this is just the overview. But I hope it’s an example of how not everyone changes their views at the same rate. In France, it’s still commonplace to view autism through a psychotherapeutic lens and view it as the mother’s fault. People who think updates to psychiatric concepts are without controversy and occur instantly haven’t been looking too closely.
I am from the USA.
I have one of the most top-teir private insurance plans available.
I live in a city with four, count ‘em, FOUR hospitals.
I have been a patient of my pulmonologist for 2 years.
I scheduled my next appointment today. The first available appointment?
In three and a half months.
Please stop with this “you can see a specialist in a week!” Nonsense. No you can’t. Not with elite insurance and not as an existing patient. I’ve had to make specialist appointments as far as 8 months out.
Yesterday I made an appointment with my primary for a somewhat urgent matter. His next available? In 3 weeks.
I hate going to the emergency room because the average wait time is 4-10 hours. I ended up in a coma once because of complications caused by the wait time.
I am in the most medically privileged position a chronically ill person in the US can be, and the wait times to see my doctor are still very very long.
There are people in my country who can’t even afford to go to the doctor and people justify it by saying “but in Canada, they have to ~*wait*~.
We wait here too. We wait JUST AS LONG, and sometimes even LONGER.
But not everyone gets to wait, and they die because of it.
That disgusts me.
Universal health care now, please. And yes, my full time working, disabled, chronically ill self is more than happy to fork over taxes so that nobody goes without healthcare-even the people I don’t like!
I waited 22 months to see the top geneticist on EDS here in the US. I waited at least 6 months to see one of the few neurosurgeons who is qualified to do surgery for my condition. Once I had to wait seven months not even to see a doctor, but just to get a sleep study, because the facility is that backed up (though that’s more of a supply failing to catch up with demand problem than just general Ways Things Are. They could build more rooms or facilities and make a profit with the demand… why Tucson doesn’t do this is beyond me and the bane of my existence.) Making a new patient appointment with an actual DOCTOR at a PCP office here ranges anywhere from 4-8 months. You can usually see a NP or an MA sooner, but sometimes it’s still 1-2 weeks for urgent, acute issues for existing patients and 1-3 months for new patients.
But even as sick as my chronically ill disabled self is I wouldn’t care if all those times DOUBLED, if that meant everyone had access to healthcare and people didn’t have to ACTUALLY FUCKING DIE because they can’t get simple things treated.I get most of my care from the big hospitals in Boston and the first time visits for specialists have AVERAGED 3-6 months. AVERAGE, as in if I get in faster I am usually shocked.
Also, this is assuming you can even get to see the doctor. Insurance sometimes mandates you see a doctor at another hospital they own before one that is in network but not owned by them. So then you have to wait to see that doctor, and usually have that doctor be like ???? I can’t help you, then have to wait for the appointment with the other one.
I live in the USA near a teaching hospital – and there’s another teaching hospital fairly nearby – and have never been surprised at truly awful wait times. I’m on Medicare/Medicaid.