Moggy Mania

Digg: "I've Got Measles! Thanks Mom!"

2008-03-04T06:09:00.001-08:00

This is mostly a quickie entry, since my attention is pretty much tied up with other things... But, while wandering from one online thing to the next, I managed to check the recent activity of my friends at Digg and saw that InvisibleK had pointed out a worthwhile one: I've Got Measles! Thanks Mom!

As the page says:

"Please digg so more parents will read that the link to autism has been debunked. Measles is highly contagious and can cause brain swelling, pneumonia, and even death."

I already know at least one person that has gotten another one of the Dread Diseases (whooping cough)... Sad to say, many people don't seem to realize how vaccines actually function in a community, that it's not just a matter of one person being protected or not. Ideally, it works like horses or wagons circling together during an attack: the large majority of individuals that are healthy get vaccinated in order to form a protective ring around the babies, elderly, or immune-disabled that can't safely use the shots to defend themselves. If there aren't enough healthy inoculated people to form that crucial barrier, the diseases can start attacking those vulnerable people, getting the chance to mutate into a form the vaccine can't handle -- potentially causing a real epidemic.

The other problem, of course, is that most people don't have the medical experience to have a clue what they're risking. As Elizabeth of Screw Bronze put it, speaking about her own past as a non-disabled citizen, "getting the flu or cold was the worst" the typical person fears. They don't think in terms of not being able to get out of bed for weeks, crying secretly out of the fear that perhaps they won't be alive 24 or 12 hours from now, being in the hell that many hospital wards can be. They see things like autism as the pinnacle of horror expressly because they haven't seen what real nightmares -- like the one Elizabeth described in "Fragile" yesterday -- are like.

Relatedly, I read Meet The Austins by Madeline L'Engle this past week, and was surprised to see how casually she treated the subject of all the children coming down with measles. There was no sense of the disease being dangerous or even particularly horrible; she portrayed it as essentially being on par with an average case of the flu. Odd for a disease that killed so many, even though it was in a young-adult novel; then again, it might say a lot. Many older adults were told as kids that a deceased child had moved away or stayed asleep forever -- combine that with sterilized depictions of major illnesses in media, and the lack of terror at the big diseases makes a lot more sense.

(First post with the newer version of Windows Live Writer! If nothing bad happens in my life in the near future, then hopefully having WLW will get me blogging again; like it a lot more than the web client or Semagic.)

Urgent help request by mother of autistic boy being abused at his school

2008-01-05T07:39:00.001-08:00

I logged into Gmail a little bit ago, and found a very disturbing message someone had sent to me through the comments at a public LJ comm entry. I have no idea who might be able to help her, but the woman & her boy clearly need some kind of help -- this is just too fucked-up wrong. Here it is, pasted directly from her comment (subject links back to it):

Subject: I Need Help with my sons abuse by teachers
My mildly autistic son is being abused by his school teachers they throw him face down and leave marks on him and I don"t Kn ow what to do.... the school Denies they are doing any thing wrong... Any one Can contact Me by mail till I get a phone (Amy Crowe 514 west main Ashland Wi 54806)Please Help!!!

Please do forward to anyone (or any group) you think might be able to help them. I've been out of the advocacy arena way too long to have any clue where to even start...everyone I haven't kept in touch with via LJ appears to currently have mostly-dormant blogs and/or no updated contact info. The best I can think of otherwise is a teacher & advocate way over in the UK (Mike Stanton) that might know someone over here in the USA.

[This would be cross-posted automatically to IJ, but I haven't learned how to make Flock do that, and Semagic won't stop crashing.]

This is why I hated having SA take over LJ.

2007-07-24T19:57:00.000-07:00

First, a note to Ballastexistenz: I'm working on the "8 Things" but a new bit of havoc has hit my life so I forgot temporarily. (I also am playing with the idea of including pics, as you did. I really enjoy using visuals, and it was a brilliant addition to the game.)
--

So, just recently, I started using LiveJournal daily again -- both writing, reading my oversized "friends list" and commenting. So of course NOW the system goes down.

How it's being handled is really irritating, too. If you go to LiveJournal, the link for details about the outage points to the status page for SixApart, the company that bought them out a few years ago. SA's site clearly states "we are working to bring TypePad back online safely as soon as possible" (emphasis mine), followed by a series of details as each individual aspect of the site was restored; now it says that they're busy figuring out why their backup supplies failed. The only thing mentioned about LJ or its sibling Vox is that they're completely down. >:-p

Having been through a lot of LJ outages, I know from experience that they can (and used to) bring the site in read-only mode somewhat quickly after power was restored, then let one server of users at a time start posting, and finally rotate server freezes (no posting, no commenting) while bringing comments fully up. There were some shockingly long downtimes, but generally power outages wasn't the cause, and their site (or their .org variant) gave updates as to what was going on.

It sounds like when SA bought LJ, they should have kept more of the employees, or at least have a better backup team for emergencies. Power's been up for four hours already, twits, it's time to show some results...

Incidentally, for all of the people that are so far not there yet: if you want to be part of the autistic or disabled community (which includes partners, friends, and relatives) on a more personal level, LJ is a good place to go. The site lets people opt to have only chosen friends (one, groups, all) see posts, which lends to a more intimate atmosphere.

"Life At The Intensive Care Nursery" IS worth it.

2007-07-02T19:33:00.001-07:00

I just got done commenting on "Life At The Intensive Care Nursery" -- which, while otherwise well-done, made the obnoxious mistake of asking whether it's "worth it" to even try saving disabled or sick infants when many of them will be permanently disabled.

All I can say is: if you have the time, do read, and let the author/public know here in the comments that being disabled in itself typically doesn't mean having no/low quality of life.

It'd be nice if reporters made half a fricking effort to ASK those of us that live with permanent disabilities whether we think it's worth living our lives or if we'd rather have died at birth. :-/

WikiFrustration

2007-06-21T15:58:00.001-07:00

I'm trying to edit an article on Wikipedia about visual snow, since at one point the "treatment" references autistic sensory differences...but the autism-related section on the site is headache-inducing.

When I went to the regular "autism" entry and checked what it had to say about sensory issues, the description was so far out of whack that it'd do more harm than good to link to it. I can't even begin to explain the problems, though the fact that it refers to taste/oral sensitivity as a "food obsession" might give a good idea.

So I went over to the rights movement area... Nothing useful there, it's all about the controversies and people involved. It's also, incidentally, clearly written in a way to make us look like aggressive jerks that aren't in touch with the reality of most autistic people. :-p There's a serious need for a page of autistic explanations of our traits, lives, and difficulties -- alongside non-autistic-ally descriptions of how things look from the outside, for newer NT allies to use as a reference.

I'm not saying that there isn't plenty of this on the internet in general (though the more, the merrier)... But it seems that most of the time, Wikipedia only links to its own pages aside from a little "External" links section at the bottom of each entry. That suggests to me that we need to have something centrally on-site for people to link to.

One way to alienate a disabled person...

2007-06-17T22:56:00.001-07:00

I was originally going to post some interesting videos here that I'd come across on YouTube, but instead I've decided to write a bit about why today sucked.

For those of us in the United States, today (Sunday) was Father's Day -- and for the first time, I think, I didn't have any contact with my own father. There are a number of reasons for this, things I've seen happen to other disabled people, and I want to start writing about those. Perhaps others will recognize their former lives, or perhaps how they or someone they know treats a disabled person.

The first one is so flamingly obvious that I'd think I wouldn't need to point it out -- but given it's a problem, I guess it's not something everyone recognizes as an issue. This difficulty is how other people or family members are allowed to speak about me, or disability in general, or something that could easily be linked to me as a disabled person. It's not just a problem with immediate family members, of course; I've had this happen with close friends and partners before.

When I spend time with somebody, what they state as their beliefs, or what others have relayed to me, is often forefront in my mind. I can't enjoy myself, relax, or feel positive emotion when I know that somebody I'm with actively believes horribly bigoted things about people like me. Knowing someone I'm close to silently accepts those things being said, either in front of me or behind my back, hurts and makes me figure they share the offensive sentiment; eventually the person does pick up some aspects of it.

That is one of the many things that has happened between my father and I, playing a role in us having gone from extremely close to, well, not really talking. His partner, an otherwise very likable woman, makes comments that suggest attitude, choice, and effort is what's behind energy levels, financial success, happiness, self-esteem, and all of those nice things they have. Even though the stuff said is usually not aimed at me directly, the topics still reflect the idea that my problems are all because I'm a malingerer or something.

So it's impossible to hang out with my father, without having "their" attitude come to mind while we're together or soon afterwards. I end up feeling (from this and other things) like he must figure I've chosen to be an immature lazy disappointing burden on him, being upset with myself for having perhaps every third sentence acting as evidence of it. After all, if he felt that all the things his partner says were bullcaca, then he'd point it out to her, even if only in private; the comments wouldn't have continued for years.

My big point with all of this, for those of you that might be letting nasty comments pass: when you choose to silently ally with (rather than fight) prejudice, it does affect your relationships with the targets if they find out. They might decide you secretly share that attitude, or that the ally is more important to you than they are by a great deal, or that you feel they aren't worth the effort/struggle of protecting from harm or defamation.

There's far more I need to write about on this topic, but I think this is enough for the moment... I'm including a video I just encountered tonight, which is relevant to the problem if the disabled person is autistic: 16 Ways Neurotypicals Can Empower Autistic People

"To equate intelligence with motor skills is as absurd as equating it with height."

2007-06-16T21:04:00.001-07:00

Bah, I hate the Summer heat, because my body is not pleasant about it! I really wish we'd have an unusually cold, rainy Summer for once. Anyway, I just saw an article I immediately wanted to share with everyone that might not see it otherwise.

Several months back, there was quite a stir over parents that chose to have their daughter's growth halted in early childhood. "Ashley" has CP, and was assumed to have cognitive growth only in keeping with her motor control, which never seemed accurate or realistic to me... Her parents were all too quick to refer to her in terms suggesting she was merely a large infant in their eyes, seemed almost contemptuous of the idea that she might be even that intelligent.

It turns out that my suspicions were probably correct, as it turns out: FRIDA just posted an essay by Anne McDonald, who was born with the same impairments as Ashley, and who suffered similarly from others assuming she wasn't intelligent. An excellent quote:

"Any assessment of intelligence that relies on speech and motor skills cannot conceivably be accurate because the child doesn't have any of the skills required to undertake testing. To equate intelligence with motor skills is as absurd as equating it with height. The only possible way to find out how much a child who cannot talk actually understands is to develop an alternative means of communication for that child. ... Once communication is established, education and assessment can follow, in the usual way. No child should be presumed to be profoundly retarded because she can't talk. All children who can't talk should be given access to communication therapy before any judgments are made about their intelligence."

My mother told me just today about how one of my first roommates was a tiny infant with spina bifida that was completely ignored because the belief current at the time was that people with early-fetal-onset disabilities weren't mentally present. Nobody visited, parents didn't come back, and the staff ignored him other than for medical care. Of course, the total lack of stimulation brought his development to a near-halt, reinforcing their belief that he couldn't grow...

But my parents kept going over to soothe him when he cried or just interact with him, and noticed that he clearly was responding, just like I had despite claims it wasn't possible. Nothing changed until they dragged the head nurse over to interact with him and she saw him responding like any infant. Having discovered he did in fact have a mind, the staff put him in a little seat at the nurse's station so others could play/interact with him. He "blossomed" in development after that, not surprisingly!

I can't help wondering what I'd be like, had my parents followed advice and dumped me in a hospital to be ignored too. What if they hadn't taken me home, hadn't given me liquid nutrition to make up for my poor absorption, or hadn't focused on growing a mind that supposedly couldn't grow?

The big difference between a temper tantrum and a meltdown...

2007-06-10T00:45:00.000-07:00

...keeps being demonstrated by the spoiled brat across the street.

I'm always amazed when I see people referring to meltdowns as "tantrums" -- it seems clear to me that they're different, both from the inside and the outside. At least, it is if we pay attention to how and when they happen, then how/when they stop.

Yesterday, for example, I found myself really overloaded for some reason. I was alone in my room, nothing was happening externally, yet I kept finding my stress levels skyrocketing until I'd start to cry. Since there wasn't anything else causing it, I was able to back out of it almost as soon as I noticed it happening, but if (for example) the NT kid across the street started screaming, or my mother asked me for something, or the cats were growling, I would have lost it.

I wasn't in a "place" mentally that would have let me figure out the cause, plus I knew inevitably somebody would provoke me (in part because I was going out soon) so I took 200mg Neurontin...enough to reduce my overstimulation and stress, not enough to zonk me. Good thing, since I had trouble obtaining one of the cat's medical supplies; otherwise I would have not only started crying on the spot, I wouldn't have been able to think enough to solve the issue or even to stay there for more than the time needed to say "no we don't really need it bye I'll come again" and leave.

So meltdown = ability to tolerate things is eroded to the point that the next stressor, even if unnoticed by others, causes a severe emotional reaction, overwhelming need to get away from (or halt) the current stressor, inability to think otherwise. If you change or remove the emotion, it's like those dreams where something evil is chasing you -- your mind is blank with nothing but the overwhelming need to get away that very instant no matter what it takes.

Now, in comparison, what I keep seeing the kid across the street doing as well as lots of kids elsewhere, what my brother did as a toddler, and what I've repeatedly read is the case for a true tantrum... When the little kid wants something (a cat, a toy, his brother, whatever) he promptly starts crying loudly, often screaming. Sometimes the child flails or gets aggressive.

But there are big signs that something else is going on. First, the child doesn't act like that if there's nobody nearby, unless the kid has learned they'll come if they hear him. Some people have said that they've watched little kids fall down, look around quickly, and only start crying if they see an adult. Once the tantrum starts, if they lose their audience, are ignored, are moved away from others, or sometimes if they're threatened, they escalate everything.

Second, as soon as they do get their way, the tantrum ceases and the kid rapidly loses signs of distress. Under the right circumstances, the child might even smile, giggle, or laugh not long afterwards; playing isn't at all unusual. They might repeat the fuss within minutes if they don't get what they want again, but it's not because they're continuously upset.

So a tantrum = communicative behavior used to express upset, where the person's mind is focused on getting the message across but still can refocus & function normally otherwise; often part of a "power struggle" between a child and an authority figure.

One place the distinction really matters is when there's a mix of autistic and non-autistic siblings. My brother (a tyrant as a child) and I are a common example... If I didn't do (or give him) what he wanted, he'd throw a tantrum screaming/crying that I'd "hurt" or was "being mean" to him. As soon as our mother showed up, he'd rush to her totally calm, but I uncontrollably howled that I didn't do anything. Mother would take away whatever she noticed I'd been using to relax or cope with life. Then, of course, since I still couldn't stop almost frantically repeating that it wasn't fair and I hadn't done anything, she saw that as a "power struggle" and punished me still further.

Sometimes there was a variant where he'd sit there doing something he knew really disturbed my sensory sensitivity -- moving an arm or leg rapidly in front of me or in my peripheral vision, standing inside my comfort zone, putting his video game volume up just a notch higher than I could tolerate it, chewing loudly with mouth full, etc. If I asked him to stop it, he'd just smirk "no." I couldn't complain to our mother because she'd just tell me I was being ridiculous because it didn't bother her, and I should leave him alone or be nicer to him. So eventually, I'd meltdown and try to make the stimuli stop physically, he'd fake a tantrum, and I'd get into huge trouble again.

Another example (I'm on a roll! ;) would be me versus my ex-stepfather. He took sadistic amusement in identifying sensory things I couldn't tolerate, then doing them on purpose to supposedly "desensitize" me (while calling me stuff like "baby" or "wuss") until I was so desperate to make it stop that I'd have a meltdown. At that point I invariably did or said something wrong, and ended up being punished as well as being told still more what a "baby" I was acting like! In contrast, he had real tantrums -- he clearly stomped, yelled, grabbed, hit, all the while making demands and threats. Often he'd provoke me, I'd melt down, and he'd throw a tantrum to match.

Which brings us to my last point... When meltdowns are seen as intrinsic "tantrums" that are part of autism, there's no recognition that anything externally intolerable might cause them, and no ability to acquire relief by removing the irritant. With our own brains taking the blame, the big goal becomes eliminating that ability to show intense distress. The underlying misery that remains after the "tantrums" stop is assumed to be part of autism.

(Note I'm not saying that autistic people never tantrum, or that non-autistics don't have meltdowns. Non-auties likely don't have meltdowns as often because they don't normally live in a society that is keeping their stress levels up to the point where anything routine could push them over the top. I'm not sure about tantrums in autistic people, just that I never bothered since obviously being wildly upset didn't do me any good, and I think I've heard similar from some other autistic friends.)

Of all the things I end up being quoted on...

2007-06-08T23:33:00.001-07:00

Every once in a while, I tap out a quick email to some columnist or another about a disability rights issue. Usually, in part because I try not to look, I think I don't end up being quoted.

But of all the times I do have to unintentionally "look" and do end up seeing myself referenced (thankfully without a name, which REALLY would have weirded me out) for information... It was a response to a columnist wondering about how often "medical issues" set prisoners (i.e. like Paris Hilton) free. Annoyingly, I had just tossed it out with very little (or no) editing, so the wording is completely different from what I would like at points, but too late now!

(Since I tend to find celebrities no more interesting than I found the popular kids in high school, all I know is that her family began the "Hilton" line of hotels, and she's a rich spoiled adult-brat. Letting a celebrity out of jail for a "medical condition" when anyone with something far worse would be held to their sentence really pissed me off.)

More scary stuff in the pet food arena...

2007-06-06T18:00:00.000-07:00

I'm really not up to posting, but I wanted to share this, for anyone reading that has pets, especially cats: ASPCA has issued an alert warning that acetaminophen has now been found in certain pet foods.

(I just found an excellent page of common household things that are toxic to housecats from Cornell University -- really worth checking out!)

I'm including this news on my blog because there's a very strong parallel between the way the lives of companion animals and those of disabled people are devalued, both in the media's failure to continue really reporting this, in how fast people are to support euthanizing us, and in the lack of decent healthcare for anyone but the rich...but that's material for another post later on.

Attack Of The Crazy...ZoFamily?

2007-06-05T03:45:00.001-07:00

This is a random very-late-night musing, started while I was re-ordering medication for one of my cats. Or two, depending on whether #2 stays on it or not.

I have, at the moment (with dx dates in parenthesis):
Damien with urinary crystal blocks (Jan 05...at hospital again now)
Whoosey with liver disease (+ ascites?) from benign tumor (Feb. 07)
Bastian with congestive heart failure (Mar. 06)
Max has chronic renal failure (Apr. 07)

I decided to look into a little extra info about one of the supplements we have Bastian on (starting Max/Whoo too), and one site taught me a new word: zofamily, pronounced like so-family.

Evidently a "zofamily" is a group of humans that accepts the animals along with one another as family members. Hmm. With how many people in this country now share that particular characteristic of mine, I still just call that a family. Adding a new word for it strikes me as weirdly...discriminatory, almost. Like it's saying sorry, you're not really a family like everyone else, you're a zofamily.

That likely sounds odd, but reality is that a lot of people don't include openly gay or disabled humans in their families. Gay people, when they come out of the closet, run the risk of never being acknowledged as a family member again, or sometimes not being acknowledged as existing at all. Likewise, when a person is clearly disabled, sometimes the family has them sent away to some form of institution and never visits, or might keep them in the home but not interact with them as anything more than a moving object. (I almost had that fate: my own parents were urged to do it!)

Yet if a household lovingly includes a lesbian or a gay guy, it isn't called a hofamily. When the dinner table is set so it can fully include a disabled person, the group that sits at it isn't called a...whatever we'd contract "disabled person family" to. So I don't think I should single my family -- which includes a number of cats, and has at times included dogs, and I wish included horses -- should need to be set apart as a "zofamily" because not everyone is human.

The other little bit, much shorter than I originally intended as I'm tired and it's REALLY late now... I want to tell people to not panic if/when your pet is diagnosed with something that will ultimately be terminal. Even if the vet is telling you it's "okay" to "let them go" -- tell them you need to consider, go online, and look up support groups to see what the prognosis can be. Find out what treatments exist, what other people are trying, what can happen.

The key is that vets are used to dealing with owners that don't make a concerted, perseverative effort. A lot of (maybe even most) owners on the support groups report having vets that tell them to euthanize, sure that all hope is lost, then are shocked beyond belief when the pet responds to having its medication/treatments every day. I've now had it happen several times in a year -- sometimes because the pet was misdiagnosed, sometimes because hard work paid off, sometimes because the vet was assuming a bad outcome without giving the cat and us time to see what we could do. These are wonderful, excellent, amazing, experienced vets, not know-nothing newbies or uninformed oldsters; what they suggested I try did work, we just had to give it (and the cat!) a chance.

I am not saying that it's always wrong, or that things don't eventually crash into a nightmare, or to never put a pet to sleep. I know I'm looking at losing at least one cat, maybe all three or more in the next year. But I am saying: don't do it until you know for a fact that there's absolutely no hope. If money's an issue, search the web -- there are many orgs out there that help people whose pet needs vet care but can't afford it.

(I lost a wonderful little best-friend 11 years ago only to learn I could have saved her. We were close enough, as I am with some of my other cats now, that I knew what she was going through; it ended up being part of my worst PTSD flashbacks. I try to help others avoid that mistake; even if they aren't affected like I was, the pet deserves the chance she lost.)

Psych Today article - physical illness mislabeled as a (possible) psychiatric issue

2007-06-01T20:54:00.001-07:00

Ohboy, too much handled today yet again (though at least I did get the little sticky flags I've needed)...so now I am taking a little bit to unwind. I started off at my Google Homepage, where I have a Psychology Today "gadget" listing some of the newest articles -- just out of curiosity since sometimes there's (as in this case) an interesting one.

Many of you may have heard of the controversial disorder where patients report to doctors that there are "fibers" coming out of their skin -- Morgellon's Disorder, which is now finally being investigated by the US Center for Disease Control. Very much to my surprise, the Psych Today article "Morgellon's Mystery" offers both sides, but in the process actually comes close to slamming both the medical and psych communities for their handling of the situation.

"dermatologists say [presented 'evidence'] are simply fibers from clothing, embedded in self-imposed sores, whereupon they promptly offer a prescription for antipsychotic medication. Rarely, complain the patients, is their skin examined first."

The above quote just boggles my mind. I understand that there is skepticism; it's good to go into a situation with critical thinking turned on. However, "diagnosing" somebody without looking at the body for any signs that the doctor specializes in is really disturbing -- even worse is that dermatologists feel free to throw antipsychotic medications at patients based on their own inability to find a cause for a problem, let alone when they haven't bothered examining the patient in the first place!

I think that this might in itself function as some of the best easy-to-understand evidence of how much the medical community in particular downplays or fails to grasp the dangers of antipsychotic drugs. They can serve a purpose under limited circumstances, but the nasty side-effects (which often never go away), and risk of severe long-term damage or death make them something to never be taken lightly.

"[Dr. Craft explains] there are real bugs, scabies, that do burrow into people. And withdrawal from drugs like methamphetamines can cause that sensation; so can chemical exposure, allergies, and dry, sensitive skin. Once Craft had a patient whose crawling sensation turned out to be melanoma that had spread to her brain. "You have to do due diligence to rule out other causes," he says."

Regardless of the controversy as to whether Morgellon's is a "real" illness or not, as that doctor points out, it should never be standard to ignore a set of symptoms. Still, I've encountered it plenty with my disabilities; unless I research, diagnose, find a treatment on my own, then push for it, I generally have no chance of recovery.

In all honesty, I think that humanity would finally reach its next significant increase in average life span if the medical community made an effort to stop the dismissing of patient reports. Several autistic bloggers have written about the problem of psych staff having an imperious attitude rejecting any notion that their patients could possibly know jack; it's also a really nasty problem among the physical medical community as well. I've gotten too close to death from encountering it in both communities, and most others aren't lucky enough to avoid getting killed.

"Patients start to act unusual. ... They get forgetful. They often have a speech hesitation, and they often have a hard time telling their story coherently." ... "But when it progresses, it can result in quite extreme paranoia, even delusions." Others have been diagnosed with bipolar disorder, ADHD, autism, and even atypical Parkinson's as a result of their personality change.

I can understand using atypical Parkinson's as a diagnosis for that combination of traits, since they do show up in that disorder. Bipolar disorder also seems somewhat plausible for similar reasons. But any clinician that diagnoses somebody originally presenting as average as being "autistic" because they acquire communicative difficulties, or because they seem paranoid or delusional, needs to have their license yanked. How anyone comes up with ADHD out of that mix, I really don't know.

This is actually something I need to write a separate post on sometime. A lot of people assume that any difficulty/oddity that an autistic has must be related to autism. In reality, it's more like gender: while men and women do usually have many differences, there are a lot of emotional/behavioral things that are the result of life experiences, just like in non-auties. More of us percentage-wise do have certain experiences, but that still doesn't mean that the result is native to our brains.

"I think it's a disgrace," she says of medical peers who have dismissed the patients without studying the phenomenon in full. Physicians are busy and have about 10 minutes to spend with a patient, she adds. They want to walk into a room, know what's going on right away, and write a prescription. ... Many will make a diagnosis of delusional parasitosis or hypochondria more readily than conclude an office visit without a diagnosis.

I think disgrace is putting it far too mildly, but I agree, having gotten the short end of that stick a few too many times myself. Right now, I've had a doctor or two toss out "fibromyalgia" or "chronic fatigue" as diagnoses because there hasn't been anything else they could use. Which means, as in the case of the Morgellons patients, no real treatment past palliative pain management.

[Casey] watched one laboratorian label a fiber by simply looking under a microscope. "I said, 'How can you tell?' And he said, 'I'm looking at it.' And that's how it's done in every lab across the country." That's why she asked forensic fiber experts to take a look.

I didn't quote it, but on an earlier page, Casey took a large sampling of evidence to forensic fiber experts to investigate; even using all of their specialized equipment, there was no luck at identifying them. They could only rule out everything that is known, like all the kinds of clothing we wear.

It's no surprise that patients aren't taken seriously if the tests are handled solely by a person doing visual identification. Morally, I think that if they don't want to have (or can't afford) all of the equipment needed for more accurate analysis, they should admit it and redirect the patient/doctor to a lab that does have all of that. How many other serious medical problems are misdiagnosed, ignored, and untreated -- despite the doctor possibly doing all they can -- because the lab claims to be able to do things they can't do?

Moggy needs a nap...and an autistic that needs some more accurate info

2007-05-30T18:47:00.000-07:00

I'm so tired frazzled that I'm on the verge of meltdown. Too much to do, and I'm not getting enough time to just do ONE thing. I don't handle the short time changes that NTs prefer; I feel rushed, harried, overloaded if I can't work on a single thing at a time for a few hours at a time. That's not necessarily perseverating, either... I can put the books in order in my bookcase, or clean -- or, back when I was a student, do homework.

Last night I ran into the website/diary of a depressed autistic guy that evidently has only heard the anti-autism version of what we're all about, because everything he was griping about was either a total distortion of reality or an outright lie. I can't do the full range of WTF-worthy nonsense (like the idea that we're all "mild" autistics that want research to find a single lifestyle to force on all autistics with no consideration of individual traits) so I'll have to direct you to his site instead:

Jonathan Mitchell's Journal

Unfortunately he doesn't allow for comments on his entries; I wish he did, it'd make life easier. On the other hand, at the very bottom of that index page, he includes his email address, so I am thinking of sending a friendly message. Right now I am too mixed-up, though -- and I suspect a bit that he's the sort that will dismiss anything not said by a NT. I wonder if someone like "McEwen" or one of the other parents of "not mild" auties (like the woman that runs The Joy Of Autism) would get through better?

Another autistic I found (because it's been that kind of week) is a young man that doesn't seem to realize it's OK to be autistic, and I see on the edge of making a big mistake... It's the classic one I've seen so many adult autistics lament -- he is now reaching that age where one wants to socialize or have a partner, and since he's changing schools, figures that he'll "study" NTs sociologically so he can blend in and make friends. Which, from what I have seen, works about as well as a cat trying to convince a pitbull that kitty is actually a chihuahua.

Here's the young autistic man -- I think at my age (30) that I'm outside the age where most teenagers take any advice or suggestions seriously, being that I'm "too old" to understand... Maybe there's an autistic that's 13-23 years old that could get through to the guy? Or is my thought out of whack?

Ugh, we have to leave again, now to put air in the rear right tire of my car...then more short tasks at home aaarrrggghhh!

Why isn't there a decent URL for the "autism speaks" petition?

2007-05-26T14:14:00.000-07:00

This is really annoying. I want to have a short permanent URL to the "Autism Speaks Doesn't Speak For Me" petition, or to something similar, but there's nothing available. The closest looks like this:

http://www.autism-hub.co.uk/autism-speaks-dont-speak-for-me/

It'd be nice if I had something that would fit on a sign in the back of my car... Right now I'm figuring on

GettingTheTruthOut.org
'Autism Speaks' Doesn't Speak
for Real Autistics"

But I really would rather include or use a link to the petition itself, and save the Truth one for a different sign entirely, like "learn to see past the propaganda / about autistics" or something like that.

"The new product looks inferior, like a cheap knockoff!"

2007-05-24T21:11:00.000-07:00

A few years ago, I got this nifty little set of transparent arrow-shaped flag stickies (for lack of a better word) for pointing to things in books. I'm running out of them now, so I went to get more at the store in the Post-It section...but they weren't there! Instead, both there and everywhere I looked, the arrows were just printed on an otherwise-square flag. I mean, the printing was nice, but the only colored part was the little bit inside the lines, the rest was a cloudy semi-transparent.

So, because I thought maybe I'd overlooked something or should at least let Post-It know that one of their customers doesn't like the "new" arrows, I wrote them a note through their website. (I also thanked them for sending me a good free sample pack listed at SlickDeals Freebies.)

My note told them about my old arrow flags, then described the only type I can find anywhere. I finished off by saying something about the old ones seeming much nicer, while the new ones not being custom-cut made them look like cheap knock-offs unworthy of their brand. They replied that they were glad I like the free sample, and then just confirmed (with both product number and description) that what I saw was the only kind of arrow they're selling right now.

Fast-forward to last night. I went into my desk to grab a pen, and found the black ruler-shaped back to my old flag set, with "SeeNotes" written at the top. Curious, I searched for the name on the web, and discovered that they're actually made by Redi-Tag, which could be described nicely as an inexpensive competitor to Post-It.

In other words, I told Post-It that their product looks like a cheap knock-off and that the cheap knock-off is far superior. It would be just like me to make a silly mistake like that -- at least it amused me, and hopefully made the employee that answered smirk as well.

But I'm still returning the Post-It flags now that I know where to find the superior alternative... ;o)

The right way to handle having a disabled kid...

2007-05-22T11:46:00.000-07:00

This is a short but excellent little piece relating to how people talk to & treat their young disabled family members... The author writes on the little everyday things his family did that made him feel loved and like a worthy human being -- because those "little" things do add up to an overall message for kids.

Reflections on Self-Love, Self-Worth, and Family by Growing up With A Disability

In case any autistics want to hammer on this one...

2007-05-15T00:33:00.000-07:00

I'm lacking the energy (not feeling well tonight) and my keyboard is less than thrilled with me right now... But just in case anyone else feels up to tackling it, now or later: This New Scientist blog entry & comments on "Autism and visual perception" could really use a couple of auties replying.

It actually managed to combine multiple irritating bits. First, the predictable pair:
1. The "oooh, we have data and can make random inaccurate guesses as to what it means, rather than just ask anybody that might know firsthand" effect
2. Followed by the "we can use our guesses to make 'interventions' so autistics act more NT!"
but a new one:
3. Citing Amanda Baggs' video but giving a wildly inaccurate meaning that almost completely contradicts the actual message
(That's followed, of course, by some ignorant nitwit claiming it's "meaningless" because NTs don't natively understand it.)

I'd take a swipe at it, but I can tell that I'd end up deleting whatever I said... I already did that about five times today, and a sixth time I wish I could delete what I did say.

Oh, and I have a website again...

2007-05-14T17:06:00.000-07:00

I finally got around, after months of intending to get it done, and finally started up a website again, this time at Googlepages:

I forget, did I even give it a title?

Right now, it's mostly just a holding page for links to my other stuff (bookmarks, photos, etc.) with quite a bit of rambling because I felt like it. I really just wanted to get something there so I could finally start including it in forms/signatures, rather than debating every time over whether I should include my bookmarks, my autism bookmarks, my blog, or something else. It will eventually have different pages for a few topics, leading in turn to essays or other people's sites, assuming I manage to work on it more in the future.

Did it all start with Corky on "Life Goes On"?

2007-05-14T16:55:00.000-07:00

New York Times has an article on the increasing acceptance of disability as a variation rather than a tragedy in society, film, and television.

Though I don't have time to comment on it much at all, I wanted to blog it anyway for anyone else that might not have seen it already.

Edited to add:
It seems like a shame that I didn't really care for the show in my title (Life Goes On) back when it was on; I probably wouldn't even now, given I faintly recall it just seeming too "mushy" in general. Not my style at all. When there's a show with a disabled main character that's like Murphy Brown during her more acidic years, that's when I'll go back to watching television. I stopped around the same time that show went all soft because of the effing baby plot (ugh).

Eyestrain? Just my body being weird?

2007-04-27T14:57:00.000-07:00

The last couple of years, I've found that if I use a computer for too long, I start having serious trouble thinking and a tight, headachy feeling from one temple straight across (behind my eyes) to the other. Sometimes I have to really work at not staring fixedly afterwards as well, though I suspect that's not entirely unrelated, given I'm staring fixedly when I use the computer!

I used to write with a computer as a teenager for up to 10 hours per day with no trouble. Why do I *have* to look away at "the real world" frequently in order to function with one now? Is this at all normal? Linked to my also-recent difficulty, when tired, with controlling where one/both eye points? (No, I didn't have vision trouble as a child; I don't even wear glasses, though maybe I should...)

Speaking of that problem, time for another break...

Oh, yuck, autistiphobes are advertising at my library...ugh

2007-04-25T19:02:00.000-07:00

I just got back from the local library, where I got a nasty emotional kick to the belly. As I walked towards the reference area to use the microfilm machine, I passed the community bulletin board and saw this:

Walk For Autism Research
Together we can put together the pieces and find a cure!

I've seen the ridiculous "autism awareness" posters, but they just state some fact they've pulled out of their butts... They don't pack the kind of punch that this did; this was like I'd encountered a sign saying your kind aren't welcome here, get out of our town. (When I looked online a few minutes ago, I saw that it's sponsored, not shockingly, by Autism Speaks.)

I'm not planning to go ballistic, but I do need to write people in the library system... I have to figure out a way to get them to grasp that our community has a lot of Autistic people of all ages that were raised to feel wanted/accepted here, and how it feels to encounter something like that. We have as much of a right to feel comfortable in our community as anybody does, including those hated by other small vocal groups.

Even if they don't do anything, I want them to KNOW. I'll include links to various essays & blog entries on pride vs. autistiphobia, including (as they're more likely to listen to a non-autie) the column written by Dr. Gernbacher on life with a society full of hate speech. I think I'll both email and physically mail them -- I might integrate it into my plan to contact a slew of select celebrities.

I might ask for permission, for that matter, to start posting links to the various Autistic information websites & blogs. If Autistics.org or anyone else starts holding lectures in "Second Life" that others can attend, if I get permission, I'll post those as well. KeepingAwake and I certainly can't be the only spectrum locals over three years old..

The (parody) Tragedy of Global Awareness Syndrome

2007-04-25T00:38:00.000-07:00

As randomly found on YouTube, a fun little parody: Global Awareness Syndrome.

It's entertaining to watch, but it also shows an uncomfortable truth about how society encourages or condemns traits depending on how unusual they are, rather than whether/how they cause harm. Or, for that matter, based on whether the person is possibly diagnosed with something, given how the same trait can be seen as wonderful in one person and terrible in the next.

A great explanation of capitalizing titles like Deaf (or Autistic, as I do)

2007-04-24T15:52:00.000-07:00

At some point a couple of years ago, I think it was, I started capitalizing the term Autistic. I've never fully been able to explain why, and at the moment I don't really have time to try yet again.

I was following links from one blog or entry to the next, though, wandered to ASC On The Couch, and found this excellent post with far more points that I'd even thought of: "What's up with the Big-D in Deaf?"

I highly recommend it, even if you don't personally opt to capitalize whatever your disability is. I also noticed that the left sidebar has topic posts that would be good to explore as well, hinting there'd plenty more on the site to check out!

Something I'm not sure if I'll blog on, but I had to get out.

2007-04-18T21:51:00.000-07:00

I'm not sure if I'm going to end up blogging on this at all, since it's a sensitive subject and flamewars suck. But I want to say this little bit, so it's not stuck in my brain.

I was just reading a Slate article on the VT shooter's ability to kill so many people in a short period of time. I saw references to his guns yesterday, but it hadn't meant anything. Part of the article itself meant little to me, in fact, until I reached the part about how fast one can reload the smaller handgun...then my mind filled in the details in sensory memories from being at my ex's place, as he used the same weapon with larger bullets.

I don't know if that should bother me or not, but it does. Having the memory at that point, knowing about how the killer reloaded step-by-step, what it sounds, looks, and feels like, creeps me out. It makes me wonder about how we really should be handling firearm ownership in the USA when it comes to people with violent/enraged urges, and the results in the UK. But that's the topic of another post entirely.

Standing up for what's right; this guy's supposed to be a big advocate?

2007-04-16T00:36:00.000-07:00

I'm starting to feel quite confused here. I had gathered from comments others made, and the links to his site, that Dave Hingsburg was a serious disability advocate... But lately, the more I read, the more disturbing statements I feel a need to comment on. What's up with this?

The latest one, in which the wheelchair-using author wrote of pride at forcing himself to walk up/down stairs so his guests could take the ground-level bedroom, ended up getting this response from me:

It's sad how the "inspirational cripple" tendencies live on in us even after we realize how deeply wrong and harmful they are. I have to fight mine sometimes, since having had them powerfully reinforced the first 24 years of my life left quite a mark.

But refraining from giving in is the only way to keep from reinforcing the idea that appearing or being non-disabled is superior to accommodating differences. It's the only way to combat the idea that hiding disability is a matter of being proud/brave/strong while admitting we're different is lazy/fearful/weak. It's a sad stereotype, because admitting perceived "weakness" and standing up for the right to have our differences accommodated tends to require a lot more courage, self-respect, and inner strength.

Hastily written, but it hopefully got the point across.

I think that until there's a sign that the posts will be less problematic, I'll have to pull him off my link list. If the posts don't at least stop frustrating me so often, I'll give up on reading the site as well.

This time, it was somebody I knew.

2007-04-11T13:25:00.000-07:00

I'm starting to wonder when, if ever, something is going to be done about the problem with police killing people they know are unarmed and mentally ill, especially when they were there specifically on a call to help get the person under control and on his meds...

The latest fatality was a classmate from elementary school. He was one of the cases where I was friendly with another kid in school since he was friendly towards me, but for some reason the rest of the kids shunned him.

The reporter did a good job showing that the police fucked up. The attitude from the police, however, is appalling:

Police chief: "I know there is a segment in every community that says force is never necessary and that there should be other ways to handle these violent situations. But those people are not living in reality."

Captain: "[We're trained in handling mentally ill people] but sometimes we're not able to prevent them from acting out."

Isn't there a bit of a difference between saying 'force should never be used' and 'lethal force shouldn't be used against somebody that is known to be unarmed and just needs to get back on his meds'? It's not living in reality to say there are alternatives to dealing with someone that's mentally ill, when the hospitals do it all the time?

Given "acting out" is a phrase referring to people being willfully destructive/disruptive in order to send out a message, it doesn't strike me as right that it's used to describe somebody in a breakdown. As far as I last heard, even if they were deliberately being problematic, it also isn't legal to kill them for it.

Is it going to take the police killing some high-up politician's kid before somebody with power actually starts trying to fix this mess?

The unspoken, perverted popularity contest....

2007-04-10T13:56:00.000-07:00

I just posted a set of links over at Chewing The Fat that I decided to share here...

Dave Hingsburger wrote about his shock at a teacher making openly discriminatory comments about developmentally disabled people, despite seeing that Dave is in a wheelchair. So I explained that the guy was just assuming Dave had been indoctrinated in the disability hierarchy, which is primarily held by most non-disabled people, but pushed onto us too.

For those unaware, the disability hierarchy is a perverted popularity contest, an unspoken version of a Miss (whatever) pageant. (Normally unspoken, that is; an official one was held recently, called Miss Ability.) It correlates with the frequency/severity of comments that are dehumanizing, speak of the "cost to society" or suggest abortion/infanticide campaigns. It's important to note -- as Ballastexistenz demonstrates from living on the lowest rung -- it is not related to how happy, productive, or caring a person with the disability can be, and rarely has to do with intelligence outside a very narrow definition.

Highly recommended posts
(I know some have the same title; they're very different pieces anyway.)

Ballastexistenz: Barnard Power

Kathie Snow: The Disability Hierarchy

Diary Of A Goldfish:Disability Hierarchy, including attitudes towards body shape

Dr. Gernbacher: On Not Being Human (focus on attitudes within the medical profession towards a lowest-rung disability)

It's a moral issue, they're merely trying to save things for the people they're fining for using it...oh wait...

2007-03-26T01:54:00.001-07:00

I wasn't in the best of moods already recently, for a number of stress-related reasons, but this just really has my hackles up. I actually flamed the last reporter that wrote on the topic, though I noticed that this time the Chronicle chose somebody else to do the mudslinging. (Warning: the below post is very sarcastic at points.)

Disabled Placards Proliferate: As more qualify for privilege, more seem to abuse system -- cities collect less at meters when drivers park for free

It appears that rather than actually fixing the usual budgetary mess, the city management has decided (with the Chronicle's help) to redirect the public's ire by pointing to the free-parking placards some disabled people get. It starts out by being pseudo-reasonable, citing a DMV spokesperson saying because a whopping one-sixteenth of the population gets a placard, there's "a liberal definition" of disability.

It then says: "Experts say there's another reason: temptation. ... enough to lure some people to break the law and use them illegitimately" and that officials have noticed that the use of placards rises in keeping with how much it costs to park. Gee, maybe that's not because of "temptation" but because disabled people are usually very low-income, and can't afford high parking fees or the severe fines if they can't get back to the car on time? Or that the rise is perhaps a bit more because fewer of us than ever are confined to our homes or institutions, instead being able to live in the community and shop/wander like anyone else?

No, rather than go with those logical conclusions, let's be ignorant and instead quote the Oakland parking manager as saying "you know there are some people who are just looking for a free place to park." Yeah... What a shock that Oakland has a high incidence of poverty, and also a lot of people that rely on placards rather than paying to park. Hey, I know, maybe it's intergalactic aliens with spaceships that transform into used cars and use a disabled placard since they don't handle American coins well!

To make it sound a bit more reasonable again, the article throws in "officials said they have no problem accommodating people with disabilities who need to be close to their destinations." Riiight. You mean provided the people involved are visibly disabled in some way meeting a stereotype the officials recognize, since chances are they see anyone else as "the people abusing the system who we have a problem with." Oh, and the reporter includes an advocate "for people with disabilities" as saying "it's a real problem" just to be sure we all know that it's not biased, noooo, not at all...

Interestingly, the only sentence in the entire piece that reflects that not every disabled person meets the stereotypes is that the advocate "also cautioned people not to make assumptions about who has a disability because ailments such as heart and lung disease, which may impair mobility, aren't always readily apparent." Of course, the Chronicle doesn't go into any detail, statistics, or examples to give that concept any foothold, and uses the phrase "aren't always readily apparent." (No, please for heaven's sake don't mention that a lot of us don't look disabled, or that we might have other less-known disabilities... After all, we all know that every non-disabled person out there is trained from birth to assume everyone is disabled until they're told otherwise, right? Right?)

It's followed by a recount of how a bunch of college football jocks "improperly obtained" placards, not coincidentally. The moral of the lesson, of course, being that anyone that isn't a walking stereotype is perfectly able-bodied and might even secretly be an athlete from an elite university, merely needing kind (or threatening) "encouragement" to admit it.

There's a bit about how the DMV canceled over 25k placards because relatives of the deceased hadn't turned them in. They concede that it doesn't "necessarily" mean "all" of those cases were using the placard illegally, then emphasize "but they also" hadn't turned them in. Personally, my guess is that most of those people had no clue that their relative had a placard in the first place; those that did might not have known they had to turn them in right away, and likely figured other things were more of a priority. I know that all of those could easily be the case if I were the surviving relative. (Or more accurately, I'd fail to know it's worth anything until I had lost it, then be so freaked out that when I did run across it or anything DMV-related, I'd pretend none of it exists.)

Even though clearly they don't feel the public needs to know we're not all walking stereotypes, San Francisco has a special "task force" to make sure we aren't crooks, since it's a "moral issue" to protect the people that "really" need the spaces. If they see a placard, they immediately call dispatch to cross-check the permit holder's name with the name of the vehicle's owner. If they don't match (as they likely won't in more cases than I can imagine), then the officers literally sit there waiting for the alleged criminal. The Chronicle emphasizes "occasionally hours" to imply that real disabled people never have long outings, just like they don't know anybody that they'd ever borrow a car from or ride with.

Once the alleged perp (I mean, disabled person) shows up, the cops ask him/her for the official "permit" they're required to carry. Note that the article mentions that sometimes the cops are plainclothes -- so evidently disabled people are now expected to immediately fork over paperwork "proving" we're really disabled the moment any random stranger demands it? How are they to know whether the plainclothes person is really a cop, and not some unusually bright asshole that plans on stealing the car AND the permit to make sure *they* aren't hassled?

They give an example of a disabled guy called Austin being "caught" because he was driving a friend's car while using one of two placards he had reported lost. For all we know, Austin could have a habit of losing things and didn't know (or remember) that it's illegal to use the cards after reporting them. (Clearly he isn't as organized as the theoretical asshole above.) The police react to this not with the reasonable acceptance that it's plausible, but instead by conning him into calling his friend to get the placard number. Again, it's possible IMO that the friend knows where Austin keeps copies of his old paperwork, and after being treated as a criminal after finding out he fucked up, the Austin was so stressed that he mangled his explanations.

I can say that the above is far more likely for me than some organized crime where I'd use my friend's car and an expired placard. If he really wanted to rip the city off, why not just use his own car, or have the friend be the one using an expired placard? Or both? (Maybe they thought that the police would figure that the important thing was ensuring that a real disabled person was parked in that disabled place.)

Even if he was deliberately trying to cheat on parking -- perhaps he sold a placard to raise money for medication Medicaid rejects, who knows -- this sole example that the Chronicle and SF Police came up with is sure as hell not a "moral issue" of saving the spots "for those who need them" given their eeevil criminal was one of those disabled people that need them. He'd have been parking there for free if he had the right placard/car anyway... Had it been an able-bodied friend, that would be a nice example, but it wasn't. It sounded a lot more to me like an example of the police fishing for some way to extract money from somebody, even if it meant fining some guy $500 that might very well live on SSI of $850.

They follow the above, in keeping with the best of propaganda, by quoting a little old lady that thanked officers for staking out her car and demanding she hand over her permit when she showed up, since "it's their job." Right after that good-little-cheery-obedient-crip quote, the article announced that the city is "looking into setting up a review board that would investigate potential fraud in the placard program."

Let's review, shall we? The big problem is supposedly that the rise in placards is attributable to cons denying the city huge amounts of funds. So far, the solutions that the city has come up with to control this terrible threat:

1) Spending a lot of money paying an entire task force of fully-trained cops to sit around "staking out" the cars of select disabled people (i.e. ones that are in a car they don't own) and heckling them when they arrive. The article admits outright that "most of the time" the person is totally legal, and I'd say their example suggests that most of the time, the rare fines are also against disabled folk legally allowed to park for free.

2) Paying a "review board" they'll create to investigate all of the "potential" fraud in the placard program. (We can pretty much assume that the "board" will be a bunch of overpaid nondisabled bureaucrats, with perhaps a doctor that believes all physical disabilities involve wheelchairs and a nondisabled "advocate" that feels similarly.) That's ignoring that the DMV already has a whole system up to make sure only disabled people can get the placards, and to control their abuse. It's also ignoring that the city's current task force appears to be proving that only a negligible minority of disabled parking involves any fraud at all.

3) Spreading propaganda to convince the public that the "real" problem with city finances rests on the shoulders of the disabled, rather than on the many financial scandals surrounding city management. (I somehow doubt that the Chronicle spontaneously decided to run this kind of article on page A-1 on their own, and I also doubt that it's the only way the word is getting out.)

I would not be at all surprised if, between paying the salary/bonuses/overtime/benefits of both the task force and review board, whatever studies they've commissioned, and the cost of publicity, San Francisco is spending more on this diversion than they lose or gain in the debated parking fees. As if they don't already balance the budget on the shoulders of disabled citizens in more ways than I can even begin to keep track of... But hey, that's not the real point -- the "moral issue" of making sure the public doesn't look at the whatever behind the green curtain is really sucking funding out of the city is.

Interesting quote on early childhood education...

2007-03-14T23:58:00.000-07:00

Wandering around, I happened across an article at the BBC Educational News site that had an interesting little quote at the end:

Shadow Minister for Children, Anne McIntosh, said it was inappropriate to have such detailed inspection of children this young.

"Every child is different, and develops at different stages in different ways - what works for one child will not necessarily be the best for another.

"This is formalised learning for very small children. I believe children should be allowed to find their own level under careful teaching supervision. We should free up teachers' time to teach.

"We should allow children to have their childhood and let the professionals do their job. Many fear that setting prescriptive targets between birth and the age of five can have damaging effects on child development."

I've been figuring that the interference in Autistic children's natural development does harm, but I didn't really consider that there's the possibility that just the setting of 'targets' could as well. I wonder what studies have been done on the topic, if any at all; even if one works under the false assumption that Autistic children are developmentally damaged, such research could demonstrate that forcing targets before a certain age is doing more harm than good. It's a shame that pro-cure/pro-'therapy' types, possibly including the very minister being quoted, would dismiss any such information suggesting that they're in the wrong.

On assisted suicide...

2007-01-01T22:46:00.000-08:00

As a side note first: I am posting this using tge Deepest Sender, as I had suggested to Book Girl -- she had wanted a client for posting to Blogger. :-)

I put the below in a comment at The Gimp Parade, in response to an "anonymous" claiming that all people in favor of assisted suicide want is "choices", that they are what makes "this country great" and that if we don't like it, we don't have to do it...oh, and that we should consider that suicidal people might have merely finished their 'mission' on Earth, which irritated me.

* * *

Those of us that are against Kevorkian are protesting not to prevent choice, but so everyone truly has one. (We also realize that Kevorkian's admitted goal is to use disabled babies/kids/adults in 'creative' experiments, then use untested drugs to kill. Depicting death as a mercy to us is a step in that direction. Are *you* aware you're supporting someone wishing to treat people as Hitler did?)

It is not a real "choice" when one is left ignorant about the option to live a dignified pain-free life. Nor is it a "choice" if deprived of the ability to pursue them due to income or lack of support. We also aren't being given a "choice" if somebody else decides that because we have atypical bodies or brains, being suicidal must mean we're finished with a "mission" rather than having it imply depression as it does in everybody else. If they feel it's the case for everyone, then go advocate for the right of everyone, including average angsty pre-teens, to be euthanized on request.

I learned this firsthand last year. I was in increasing pain, lifelong disabilities, no meds helped, unable to do much... I became self-harming and suicidal even with antidepressants: thought I was a burden on society and family, that my life would never improve, that the only relief would be in death.

I was the kind of stereotypical case used for pro-suicide stuff. I was even offered forms by my HMO so I could reject even basic health treatment if I was hospitalized.

So if Kevorkian were around, I would have had the "choice" to die and escape all that misery, right? Sure, except you overlook then that the physical/emotional torment wasn't necessary.

Until several changes of doctor gave me one into serious pain management, I had no idea that there was a patch medication that could help. It just happened to be very hard to get, not covered by Medicaid, hard to refill, and nobody else was aware of it.

The first patch of medication cut my pain in half, and my depression vanished with it... But it was pure *luck* that gave me that ending. What if I didn't have a way to a no-exam-needed HMO backdoor? What if I didn't have a loving friend to urge me, over and over, to push the doctor? What if I lacked the right antidepressant that gave me the tiny energy/aggression burst to do so?

If I didn't have all of those things, then how could I *truly* have had the "choice" between life and death? I would have only been able to choose between agony and death, totally unaware that it was even possible for "life" to be a tolerable option, let alone that I might be able to be happy again.

The cases I have seen used by advocates of assisted suicide usually are the same kind of story. In most, the person is lacking at least one (if not all) of the things that I had through good luck. They can "choose" between three doors -- good life, painful life, and death -- but the "good" door is either hidden behind a curtain, or locked behind an iron gate.

I can understand that people wish to have the choice of when to die, but the decision shouldn't be based on problems we can fix. Those fighting for suicide should analyze the reasons they feel that way, and demand solutions to those problems so they don't interfere in their decision. It *is* possible to lead a happy, dignified, pain-free life with any disability, but we must all push for all of us to have it. Suicide should be for when all else truly has failed, just as in nondisabled folk...not a shortcut people are tricked into taking out of guilt and torment.

Why I am depressed...at least, part of it.

2006-08-31T18:10:00.000-07:00

I've been in hiding for several weeks, just not feeling up to dealing with anyone or anything. There have been quite a few reasons for it; one of the huge overwhelming ones, though, is the constant hate speech I run into. In fact, I'm writing this because I just became upset over yet another case.

Everywhere I turn, it seems, I encounter hatred towards what I am. Eugenic organizations like Cure Autism Now or Defeat Autism Now are deeply interested in emulating Hitler's hope for a pure master (neurotypical) race by advocating the torture, destruction, and aborting of my kind. Many parents, lulled into believing they'd get some perfect ass-kissingly-obedient straight-A sporty-yet-popular neurotypical if they didn't have one of us, post unending amounts of self-pitying hateful crap about a kind of person that, despite having the task of raising, they have no interest in actually understanding or caring about.

No, don't give me any of that crap about loving a person without their autism. Total bullshit. That's like liking me as a human being but minus my female gender, but far less sane. My neurology makes me who I am, because it defined all of my experiences from early conception onwards. So you're really saying that you like my body, and that you don't like all of the little things -- my interests, my mannerisms, how I relate to other people, how I express excitement or upset -- that make me who everyone recognizes as Moggy. Same goes for autistic kids.

Then there are the other autistics. Sometimes this is what irritates me more than anything... There are folks that claim one stereotype is more deserving of a good life than another, or that can't accept that different people find different things necessary or intolerable. There are people that refuse to accept the idea that the things they're complaining about are the result of being abused rather than being autistic, or that it wasn't reasonable for someone else to abuse them based on neurology.

Constantly encountering "autism ruined my life" or "well I'm an aspie and we're better than auties" or "I'm an autie and those aspies are just whiny NTs" or "it's understandable I was beat unconscious, after all I am autistic and that does bother NTs" is deeply depressing after a while. Hell, even just the attitude of "we must suck up to (insert kind of person)" is frustrating enough to drive me to a meltdown in short order.

In fact, that brings another ranty little depression-inducing topic to mind -- the growth of factions and how they can cause folks to feel like they must not be autistic because they're not welcomed into one -- but that deserves its own post.

The general sum is: being autistic has not depressed me. Having to frequently encounter hate literature about how being autistic is this horrible thing that nobody should ever have to deal with on any level... That depresses me (and clearly pisses me off).

Afterward addition:
Incidentally, I've written an email to YouTube (where I spend a lot of time) requesting that they include disability-bashing in the list of unacceptably offensive content. I urge other people to do the same thing through their "help" interface. I've also started flagging autism-bashing videos as inappropriate "for racial/ethnic reasons" whenever I run into one, which I also encourage people to do. It only requires a little click of a drop-down menu below videos to accomplish, and all these little efforts could help keep such sites from becoming the same kind of hate mecca that other media has become.

How the library contributes to autism's bad rap (book mini-reviews)

2005-09-18T22:26:00.000-07:00

I just checked out my third "autism" book in a row. A few weeks ago, I grabbed Not Even Wrong (Collins), A Will Of His Own (Harland), and A Mind Apart: Understanding Children With Autism and Asperger Syndrome (Szatmari).

The first in that list was tolerable enough that I could read it all the way through, but the parent/author had some really weird hypocritical things going on that bothered me. Half the time he'd go on about how autistics remain the way they are regardless of how hard people try to NTify us, how we deserve to be treated with respect, then the other half was about all the behavioral therapy his son was being put through in hopes of making him more NTlike. It was like Frith's "Explaining The Enigma" had a feral lovechild with... I can't even think of an appropriate comparison, because I avoid books like that.

The second I managed to get through three pages of before dumping it back on the pile. Is it just me, or are woe-is-me my-poor-child-makes-no-sense curebie books the bubblebrained AOL of the autism publishing world? (No offense intended to AOLers, of course. Everybody needs the cute training wheels for a while, right?)

The third, by an "expert" about the autism spectrum, was such a trainwreck that I was able to take notes, much in the same way a medical student might study somebody going through a slow death. That one was not only the most creatively self-contradicting book I've ever encountered, it managed (despite this guy being a specialist) to get all kinds of really basic things wrong. For example, if you make a loud noise, and somebody cowers while covering their ears, what do you think might be the reason? I'd say: the noise hurt their ears. Dr. Nitwit feels that it's just needless anxiety. He also succeeded in actually saying, within about two pages of one another, that autistic people lack the ability to know what others are thinking, then that he has no idea what his autistic patients are thinking.

That all leads up to the book I started tonight -- Temple Grandin's latest word-avalanche, Animals In Translation. Whee, more self-contradicting nonsense!

In the first 20 pages, we discover that the author was greatly helped by being around animals, learning how to give herself deep pressure to relieve her overload, living in a quiet relatively-natural setting, and having her words taken seriously by key people. We also discover that she feels autistic children should be handled with Lovaas behavioral therapy, which (as she describes in detail) totally deprives them of precisely what helped her. Um, hello? If you'd been raised with ABA, you never would have had a squeeze machine or felt OK with yourself for needing one, you'd never have gotten to spend your days communing with animals, and you sure wouldn't have had your requests/ideas taken seriously.

These books are the best of what I could get from my library system. The only other slightly decent books (to use the concept very broadly) are by Donna Williams, perhaps best known for mixing an interesting combination of emotional/physical disabilities together and feeling that because she (as an autistic) has all of them, that must be what autism is. (I do enjoy reading her books, and they are extremely insightful, but sometimes I half-expect her to declare that a core part of being autistic is having brown hair.) If this is what *I* manage to find in the library -- meaning that I know the keywords beyond "autism" to search under -- it's no surprise at all that the public's image of autism is thoroughly screwed-up.

Wait, I'm already here!

2005-09-18T20:40:00.000-07:00

I love it when I go to create an account only to be told that my username isn't available, then realize it's because I already own the account.

Laugh with me, not at me. ;-)

This shall be, at some point, my "serious" blog. Tonight I'm focusing on backing up my notebook as its hard drive is dying, however, so things might not be so serious (mostly to save my sanity).