The Rettdevil's Rants

Latest Mercury Malicia Target: Ari Ne'eman, ASAN president.

2009-05-10T20:31:00.005-06:00

In an act of true and desperate crazy, the Mercury Malicia have truly outdone themselves.

Not to be content with threatening doctors and their children, libeling them, and calling them extraordinarily derogatory names behind their computers, they've moved on to an ultimate act of BATSHIT INSANE: "Let's get Newsweek to assassinate Ari Ne'eman!"

What. The. Fuck.

People. Get the hell off my planet if you think this is ok. Now. Do not pass go, do not collect $200. AoA, this isn't acceptable. You know that you're associated with John Best, and either he knows he is so far in the wrong he has gone to plaid, or he needs professional help about 10 years ago.

I don't give a flying FUCK what you think about neurodiversity. This is wrong. Jake Crosby--if you're defending this, know when you speak up, they know where you live. They're not above threats and have proven it before.

Any ideology that can move someone so far to hate as to threaten a young man for advocating for himself and for others like him so they can have better lives is, frankly, terrifying. The cult of AoA is an internet-religion of hate, disgust, and loathing.

I mean, not only is there some internet law that says "the first side to degenerate to death threats loses" because it indicates a lack of strength of evidence, but there's also the whole lack of ethics thing. The lack of legality thing. The WHAT THE BLAZING FUCK, YOU DO NOT THREATEN TO KILL SOMEONE OVER DISAGREEING WITH YOU factor. I mean, if you wanted to make people who were utterly uninvolved, or even sympathetic to your hysteria mongering, run SCREAMING from you, acting like psychopaths is the way to do it.

I don't care what side you're on. Anyone with any sense of ethics can see this is unacceptable behavior (and furthermore, exactly the kind of thing we want to avoid if that's what neurotypicality causes. No thanks. I'll stay me. I'm above death threats).

ND activists, do not return their fire. You all know that. Many of us are socially impaired, but we're BETTER than that.

Ari, we're behind you.

Our protests may be symbolic, but they will reach someone nonetheless

2009-03-09T15:01:00.002-06:00

Been away from the blog for a while. Life happens.

But this is important.

As most of you know, Lindt partnered with Autism Weeps to fund eradicating autism. They're having an unsung heroes of autism contest thing, in which they are taking essays nominating "unsung heroes who've made personal sacrifices in the name of fighting autism".

Well screw the whole fighting autism thing. But we should--no, in the name of Nothing About Us Without Us, MUST--nominate our own, nominate autistic advocates who've fought the bigotry that they're spreading, autistic advocates who fight the systemic impossibility, autistic advocates who speak against the injustices daily. Will they be filed in the circular file for offending them? Probably. Will someone have to read them first, possibly someone who will see that there are real people who their actions aren't just offending, but are actively hurting? I'm idealistic enough to hope so.

ABFH has the details and a better explanation. The nomination page is here.

As many people think in symbols, a symbolic act can be a pretty big deal. Make them think.

Survey: Adult Autistics In New Jersey Being Heard

2009-01-26T13:09:00.001-07:00

And it's about time.

The link is here.

Take it. Take it even if you don't live in New Jersey, especially if you're autistic. They need to hear from us. After all, they're talking about us.

Dear Michael John Carley, the Enemy of the Enemy is NOT my Friend

2008-12-24T00:36:00.008-07:00

An email from Michael John Carley of GRASP went out about a week back, asking recipients of said email to thank Autism Speaks for not pursuing the vaccine angle.

And to you I say, No. I will not.

I do not owe Autism Speaks a single thanks.

I do not owe Autism Speaks anything.

I certainly do not owe Autism Speaks thanks for following their own previously stated agenda, which is pursuing genetic research for a prenatal test. I do not owe them a thank you for continuing to wipe people like me out, before we ever are born. Their aims are directly counter to my aims, and while Autism Speaks and I both think the vaccine issue is an old, dead, beaten to unrecognizable horse that's a colossal waste of money, Autism Speaks does not deserve my thanks for agreeing with me.

When Autism Speaks listens to me, then I will consider thanking them-if they do something that deserves it.

When Autism Speaks treats autistics as human beings, instead of as sacks of parental inconvenience, I will consider thanking them-if they do something that deserves it.

When Autism Speaks actually does what they advertise themselves as doing and speaks WITH us, the autistic community, rather than trying to drown out and silence autistic voices, then I will consider thanking them-if they do something that deserves it.

When Autism Speaks apologizes personally and publicly to every child who they traumatized in the making of their awful propaganda piece, then I will consider thanking them-if they do something that deserves it.

Until that point, Autism Speaks is as much my enemy as the mercury malicia. The enemy of my enemy is NOT my friend. Autism Speaks doesn't deserve my thanks, and Autism Speaks does not and in all likelihood never WILL speak for me.

Related, from Wrong Planet and ABFH

Olympic Scandals, and people talking about that which they know nothing about

2008-08-15T18:14:00.002-06:00

We now take a break from this mostly-autism related blog to engage in some blatant gymnastics fangirling. Those of you who know me know I was a gymnast till I broke my foot, so I'm totally allowed.

People who DON'T know the first thing about gymnastics are all over it right now, raging about how the Chinese are cheating by using allegedly underaged gymnasts on their women's team. Personally, I think it sounds like sour grapes since the US got Silver (and our beloved Bela Karyoli pioneered age falsification in Romania, so it appears he is more angry that we can't get away with it than that China may be), and futhermore a silver medal is wicked awesome anyway.

Aside from sounding like sour grapes, the vast majority of people who are railing about cheating don't have the first clue about the sport! I've got mixed feelings on the age rule anyway (it's unenforceable, and people are always "oh my gosh, 16 is an old gymnast right?" when, no, it's as young as you can be internationally, I always wonder if there'd be less 'washed up at 16' if age wasn't a big deal...but at the same time, some countries are really awful in their training programs), but seriously, if you're going to holler about cheating, know why it's relevant.

The reasons being:
a) younger girls are more agile and smaller. Postpubescent women tend to have higher weight to strength ratios though there are exceptions.
b) in theory, younger girls are less prone to pressure and fear. Talk to teenage girls sometimes and you'll see this is crap.
c) younger athletes have had fewer injuries on average and recover faster. They also are on average more flexible (note that of our American gymnasts, nearly 19 year old Nastia Liukin is far and away more flexible than 16 year old Shawn Johnson, so this is just on average).

Seriously. SILVER IS AWESOME, PEOPLE. Yes, cheating sucks, if they did indeed cheat. But there's no proving it and please, if you're going to argue about it, at least have talking points beyond "well it is cheating and it is the rule and I don't know why it is unfair or the rule but it is and we lost so I am going to stomp my foot and holler".

Please.

Oh, and a HUGE CONGRATULATIONS to Nastia Liukin and Shawn Johnson of the US for their Gold and Silvers, respectively, in the Women's All Around (competing all 4 events). Nastia was glorious, and Shawn was a real class act right up to the end, displaying pure sportswomanship. Our national team coordinators could learn a thing or 12 from Shawn about accepting defeat gracefully.

Now back to our regularly scheduled blogging.

ASAN's Response to Michael Savage

2008-07-24T03:33:00.001-06:00

From ASAN:

To Sponsors of The Savage Nation Radio Show, Syndicate of Talk Radio Networks, and sponsors of Talk Radio Networks programming:

We, organizations representing people with disabilities, family members, professionals and other concerned citizens, are calling upon you to withdraw support for Talk Radio Networks in response to the outrageous comments by TRN personality Michael Alan Weiner, also known as Michael Savage.

On July 16th, Weiner announced: “Now, you want me to tell you my opinion on autism, since I’m not talking about autism? A fraud, a racket…You know what autism is? I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is…What do you mean they scream and they're silent? They don't have a father around to tell them, "Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot.”

These comments represent dangerous misinformation. The refusal by Talk Radio Networks to condemn the comments or undertake any steps in response to them, as well as Michael Savage’s refusal to apologize, is absolutely unacceptable. The autism spectrum is a very real developmental disability affecting millions of Americans. It includes a series of impairments in social interaction and communication, executive functioning, sensory processing, and motor skills. Adults and children on the autism spectrum often require substantial supports, services and education across the lifespan. Comments like those on the Savage Nation do real damage to autistic people by increasing public ignorance and misinformation about autism, thereby putting at risk vital education, supports and services. Contrary to the remarks by Mr. Weiner, there is no evidence whatsoever to suggest that autism is over diagnosed – in fact, research suggests that there is substantial under-identification of the autism spectrum, resulting in a lack of vitally needed services and education. In addition, these remarks revive outdated and damaging misconceptions about the source of autism, recalling the “refrigerator mother” myth in which parents were blamed for having autistic children.

Talk Radio Networks’ sponsors must consider whether or not to associate with the hateful and offensive comments spoken by Michael Weiner. Because TRN has taken no action, we urge you to communicate the need for Mr. Weiner’s immediate removal by withdrawing sponsorship for TRN’s programming. There are over 50 million people with disabilities in the United States, representing approximately $200 billion in disposable income. We represent a market that cannot be ignored. By disassociating your businesses from the ignorant and hateful remarks made this past week and taking practical steps to help educate the public about the true nature of the autism spectrum and other disabilities, we can move forward towards creating a world that will recognize the rights of all people to respect, dignity, support and inclusion.

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org

Andrew J. Imparato
President and CEO
American Association of People with Disabilities (AAPD)
http://www.aapd.com

Jim Ward
ADA Watch and the National Coalition for Disability Rights
http://www.adawatch.org/

Marcie Roth
Executive Director
National Spinal Cord Injury Association
http://www.spinalcord.org/index.php

Barbara Trader, MS
Executive Director
TASH
http://www.tash.org

Marca Bristo
President
Access Living of Metropolitan Chicago
http://www.accessliving.org/

Jean Arnold
Co-founder and Chair
National Stigma Clearinghouse
http://www.stigmanet.org

Phil Schwarz
Vice-president, Asperger's Association of New England
http://www.aane.org/
Member, Board of Directors, Autism National Committee
http://www.autcom.org/

Deirdre C. Wright
President & Co-Founder
The Asperger Syndrome Alliance for Greater Philadelphia
http://www.ascendgroup.org

Stephen Drake
Not Dead Yet
http://www.notdeadyet.org/

Alex Plank
WrongPlanet.net
http://www.wrongplanet.net/

Lawrence Carter-Long
Director of Advocacy
The Disabilities Network of NYC
http://dnnyc.net

Amber Smock
Feminist Response in Disability Activism
http://www.ourfrida.org/

Happy Birthday, Katie.

2008-07-22T01:54:00.002-06:00

As was pointed out on Stop, Think, Autism (sorry for no link, I'll edit later), today is Katie McCarron's birthday.

Katie was a beautiful, happy little girl who should still be here playing with Teletubbies, going to school, singing songs, and being a little girl who loves being fussed over by her grandparents. I still have an elephant charm hanging from my medical bracelet for Katie, and think of her every day.

Katie, you will never be forgotten. People ask about the elephant, Katie, and I tell them about a little girl who loved the zoo, and knew her shapes, and who loved cows, and whose grandparents and daddy fought very hard for her to be seen as equal to any other little girl in the eyes of the world. It's not fair, Katie, because I'd much rather be able to say "I know this awesome little girl in the midwest, her name is Katie, and she loves animals, karaoke, and the color pink". It isn't fair at all.

But you will never be forgotten. I promise this. Rest well, precious child.

How not to tell your daughter her grandpa died.

2008-07-14T22:48:00.002-06:00

So it's no secret that my family and I don't talk, right?

That isn't the point right now.

Right now I am upset. My grandfather died, apparently nearly a month ago. Because of distance I didn't see my grandparents very much, but I did/do love them. And I think they love/loved me too, even though I was a weird kid. Something you never want to think about is that the adults you grew up loving as a child are indeed going to die.

You definately don't want to think about how the news is going to be sprung on you, but you assume there will be tears, hugs, kleenex, and perhaps chocolate. You assume that if there is a lengthy hospital stay before hand you will be notified. You assume that if it's sudden you'll be notified BEFORE the funeral, with time to get there. So if there is a lengthy hospital stay AND a time lapse between the death and the funeral, there is no reason you shouldn't be able to make plans to be there, right?

Wrong, apparently.

I just got an email telling me my grandfather, who I did indeed love, died on June 29. He went to the hospital on June 12. Today is JULY 14. Does anyone else see the problem here? Yes my mother hates me. I pretty much think she can fuck off too. That isn't the point. It isn't her place to decide to punish me OR my grandparents for her and my differences by controlling information.

I would have liked to see my grandparents again. And you definitely never use fucking email 2 weeks after the fact to tell a child that their grandparent died.

Yes, Alex, you ARE special. The GOOD kind.

2008-05-24T22:19:00.002-06:00

In Port Saint Lucie, Florida, a five year old boy was voted out of his Kindergarten class by his classmates and a truly deploarable excuse for a teacher.

This teacher had the students tell Alex Barton, age FIVE, exactly what they dislike about him. Alex is being evaluated for Asperger Syndrome and has since this spring. Diagnosis, though, isn't what matters here.

What matters is that this so called teacher acted in a thoroughly detestable manner towards a child. This is hateful, builds stigma, and builds hate. Not acceptable. If you can't handle kindergarteners you shouldn't teach kindergarten. It is really that simple. Spreading the idea that it's ok to treat others like garbage just makes it all the worse. She has no business working with kids if she cannot control herself. Adults who bully small children are lower than people who kick puppies, and those people are pretty low.

Alex, honey (I work with kids, that's my excuse for the language!), this is for you:

Special isn't a bad word. Once upon a time, special was a good word. It meant there was something about you that was wonderful, exciting, unique, and different in a really cool way. You are a wonderful kid, just because you are YOU. You are doing your best, and everyone knows that. You didn't deserve what your teacher and the other kids in your class did. They were WRONG. It was mean, it was bullying, and if the world is at all fair something will be done about it. A whole lot of people are making a big fuss with the school and the news just for you, right now, so that never happens to you or any other kid ever again.

And to the 2 kids who voted that Alex should stay in his class:

GOOD FOR YOU. And good for your PARENTS. It's sad that kids who try to understand their classmates are so rare, but it's really great that you stood up to your classmates for Alex. Parents of these 2 kids, give them a hug. A big one.

To the school board where this atrocity took place:

If you don't see something wrong with this and remove this teacher immediately, you really have no business having any say in the formative years of any child. School is not a reality show. Kindergarteners should not have PTSD and especially not from their teachers.

What Parents Of Autistic Kids Can Do

2008-05-20T04:15:00.017-06:00

As a response to my inaugural posting on this blog, one reader suggested that, in addition to calling out the misdeeds of many parents, I or Kassiane should tell parents of autistic children what they can do to positively impact their children's lives. I thought this sounded like a pretty good idea, so this is my own modest attempt. This list is certain to be incomplete as I am sure I will leave more than a few valuable suggestions out.

Allow your child to be autistic. I'm not crazy about the wording on this one because it really isn't the parent's right to say whether or not the child is "allowed" to be autistic any more than it's the parent's right to decide whether or not the child is "allowed" to be gay; perhaps "accept" would be a better word. The meaning here is fairly simple: no 40 hours of ABA to establish eye contact, no attempts to guilt or punish your child for unusual behavior, and under no circumstances is it acceptable to declare to a mass audience that you resent your child coming into your life or have ever felt a desire to harm them.
Second-guess the specialists. Some of the worse abusive mistreatment (and outright evil torture) of autistics comes at the hands of so-called experts in the field. The lessons of the Milgram and Stanford Prison experiments (it's up to you to look those up if you don't already know) apply doubly, tripley, and quadrupley more so than usual when the individual is autistic or otherwise unusual. Literally anything, without exception, will be justified in the name of making your child appear normal (which they believe is the same as making the child actually normal), and thanks to "right to treatment" and parental rights laws, your child has zero power to object to anything that is done to them, unless you say no for them. Question everything the specialists tell you and then, after they answer your questions, question their answers, and don't be afraid to yank your child out of their "loving care" in a heartbeat, or to press civil or even criminal charges when and if they apply.
Teach self advocacy. Autistics are often so beaten down by society at large that we have a hard time asking for things that most people would consider a right. It is therefore the responsibility of the parent to teach an autistic child that they have an absolute, unquestionable right to advocate for their own well being and their own wants and needs. Listen to what they communicate to you (remembering that behavior is communication), and respond appropriately. Also don't tolerate the refusal of others to ignore your child's efforts at self advocacy.
For the love of Raptor Jesus, plan for the future. Your autistic child won't be a child forever, and thanks to the wrong kind of advocacy many of the social services are parent-and-child oriented. This leaves many autistic adults with nothing to fall back on when they turn 18 and far too often the only available options are extended guardianship (in which we invariably have limited autonomy) or the streets. Put something aside, set up a trust fund, do whatever is within your power to assure that your child can have an independent adult life without becoming homeless.

For the umpteenth time, I don't hate parents.

2008-05-09T17:49:00.002-06:00

Seriously. I get sick of this. Yet I have to say it again and again and again, and I'm supposed to be the one with the receptive language problem. What gives?

I.
Don't.
Hate.
Parents.
Just.
Because.
They're.
Parents.

Are there people whom I cannot stand because their views on many things are frankly disgusting, as are their approaches to things, and they happen to be parents? Yes, there are. But my distaste for these individuals isn't because they're parents, I may just know about it because we have come into contact because of their parenthood. But--IT HAS NOTHING TO DO WITH PARENTHOOD.

Seriously. Parents of autistic kids, or for that matter siblings of autistic kids, are not being persecuted by nasty auties who can't seperate them from our own families. Yes, my family is epically shitty. I can tell the difference between my epically shitty and dysfunctional family and other dysfunctions pretty easily, even over the internet. If I dislike you, or-as is more likely, your approach-I am perfectly capable of disliking it on it's own merits or lack thereof. It has nothing to do with MY family, it has to do with other philosophies. Just trust me when I say that if something relating to those particular issues hit a message board or blog, I wouldn't be posting my opinion, I'd be calling CPS.

I'm friends with several parents of autistic kids. But the thing is--to these friends I am not a universal translator, or someone who can help them make their kid more...whatever, I am a friend. I am a friend who can be a royal asshat sometimes, silly sometimes, have a bad day, has a serious sarcasm infusion, and just IS. I am not that girl who has what little Trevor has so let's see if she can philosophically balance autism sucks and autism is who you are yay woohoo! Having a token autistic friend is kind of like having a token minority friend, if you think about it it's very tacky.

And yes, I am sarcastic. I am sarcastic a LOT. No, being nice doesn't help. Being nice gets me walked over or it makes people think I am a push-over or even less tough than I look and then they think they can verbally or physically attack me. Yes, sarcasm does in fact make me feel better. You'd be sarcastic too if you were me.

But no, I don't hate parents, except the ones who have specifically earned it, and I do resent being accused of such. When and if this policy changes, I'll be sure to send out a press release.

Your Friendly Neighborhood Autism Specialist

2008-05-05T09:04:00.001-06:00

Welcome to my office Mr. and Mrs. Doe. I am Dr. Generic, PhD. It is a good thing you came to me as soon as you did; one moment more and it would have been too late to do anything. Before I begin there are a few things you need to understand about your newly diagnosed child.
The first thing you must understand is that everything is about you. This is contrary to what most parents have been taught about raising a child, however most parents have a proper child and not an autistic freak. Make no mistake: your child, by the virtue of existing and of being autistic, has robbed you of your life and dignity. You are a real person, with empathy and real feelings. Your child is an empty shell without capacity for empathy and most likely without a mind. Therefore you, as a caring human being, should think of your child only in terms of how you are affected. Please note that this only applies to your autistic child; if you have any proper children who aren’t diseased, they still come first.

The second thing you must understand is a long list of things your child will never do. Your child will never go to college, never hold down a job, never get married. Any fairy tales you hear of autistics doing every one of these things should be disregarded immediately. If your child ever does manage to keep a job, it will never be anything more than flipping hamburgers. In all likelihood your child will spend its entire so-called life in diapers, unable to speak or feed itself. This is a tragedy, for you.

The third thing you must understand is that, because your child is an empty shell and a train wreck, literally anything you or others do to it is justified. We call your child “it” because that is exactly what it is, a thing. Real children talk to and play with the other children; your child doesn’t. Therefore your child is not a real child. You may drag your child to a practitioner of any kind of supposed treatment, possibly causing it to lose a kidney in the process if not more, and not worry about legal consequences. Treatments may be performed on your child, which would be considered a human rights violation if they were done to real people, and neither you nor the practitioner will be ever held accountable. Feel free to use your child as an outlet for your rage about any disappointments you have in your own life. You may harbor thoughts of ending the so-called life of your child and should feel free to express these desires openly; you shall be praised, possibly even paid a salary, for doing so. You may even act on these thoughts with few if any consequences. Laws exist to protect real people only.

The fourth thing you must understand is not to be fooled by what seems like a functioning mind in your child. If your child is ever good at anything, even better than other children or adults, you must understand that those are simply splinter skills and are in all likelihood irrelevant. The most dangerous possibility is that your child may some day wish to express an opinion concerning its own situation. This behavior must be discouraged wherever it is found.
The fifth and final thing you must understand is that the only way your child will ever grow in any way whatsoever is through the treatments prescribed by myself and any other self-proclaimed autism specialists, designed to make it more normal and possibly even turn it into a real person. Some of us use chemicals and diets to try to turn that thing into a real child, though most of us don’t agree with that. Most of us believe in behavior modifications where, if your child successfully behaves like other children and represses all autistic behaviors, it will receive a cookie. If your child fails to behave like a real person we have several creative forms of motivation at our disposal. Any research on the necessity of certain behaviors to the well-being of autistics, and the harmful consequences of forced normalcy, should be ignored. Your child has no mind and therefore needs nothing.

Welcome to the exciting world of owning a broken toy.

Sincerely yours,

Dr. Generic, PhD.

I can has help! yay.

2008-05-04T22:53:00.002-06:00

I don't blog quite as often as I'd like, what with real life happening and executive functioning problems, and with my perfectionism thing-namely if I put something out there I want it to be at least half decent and well thought out. Because of this a friend of mine to whom I had offered bandwidth on the main Rettdevil site is going to be putting some essays here. He'll be using the pen name Gen Eric (ha. ha. Bad puns 'R us) for blogging purposes.

So if something doesn't sound like me, chances are pretty good it isn't. Our views are pretty similar, but our ways of stating things can be awfully different at times. So no, you aren't losing it, someone else is using my blog space, and yes he has permission.

We are Kathleen.

2008-04-04T13:12:00.004-06:00

As though this isn't posted about in 10.5million other places, my turn.

Kathleen Seidel got a truly awsomely ridiculous subpoena in which the Reverend Lisa Sykes and her skeezeball of a lawyer wish to know anything and everything about Kathleen and, apparently, everyone on her blogroll.

I for one will not stand down. This is an absurd violation of everyone's rights. Lisa Sykes, you will not get away with this. Your child isn't mercury poisoned, but your heart is made sour with the poison of hate. Step down from the pulpit, for you are the bad apple in the barrel that is souring the rest. Hate begets hate.

That's right, I said it. Jesus doesn't LIKE retaliatory subpoenas.

Now, a la DoC, I will fully disclose as well. Note that this is my own free choice. Legal bullying just makes you look small, petty, and weak, Shoemaker & Sykes. Petty in particular.

I do not work for neurodiversity.com.
I do not work with neurodiveristy.com.
I've worked with ASAN, an autistic advocacy group. I'm autistic.
On that same vein, I have spoken for autism conferences, the vast majority of which were unpaid or expenses only.
The previous 2 points fall into the category of "get over it".

I met Kathleen at a conference. If she took notes, that means she can write with her hair or some other such nonsense. We ate meals in the same place at the same time, and were generally social. Kathleen is as smart and funny in person as she is online and I am honored to be able to call her friend, and to be on the same "side" since certain parties are hellbent on making everything into a war.

I do not work in medicine, law, pharmaceuticals, what have you.

Today, I am Kathleen

Some things to keep in mind during autism "awareness" month.

2008-04-01T15:52:00.002-06:00

Ah April, the true cruelest month, at least if you are autistic or sympathetic towards autistics and what we really think. "Autism Awareness Month", they call it. Awareness of what? It seems more and more to be awareness that many parents feel cheated because they didn't get the typical or supertypical child they feel they so richly deserved, a month of awareness of how the PARENTS feel they suffer, a month of awareness of all the things they are putting the child through to put themselves out of their misery. Quackery awareness month, even, but of course no one will come out and call a spade an effing shovel because autistic people don't count in this society. That's right, it's a f*ing shovel.

With that in mind in this vomitous puzzle piece bedecked month, here are some things to keep in mind if you intend to "do something for awareness" or are bombarded by people who are (or are asking you why you aren't):

1. "Awareness" is not the same thing as information. I can get 10,000 people to wear a puzzle ribbon pretty easily but that doesn't mean they know a blessed thing about autism. "Awareness" is crap.

2. "Awareness" is a vague goal, in addition to being crap. Awareness of what? Awareness of what autism IS? No, no one exactly knows and that's too much like information. Awareness that adults need services too? No, we don't look cute on their posters. Awareness that autism is more than just people smearing shit and banging their heads? No, that makes us sound too much like people. Awareness that many parents think that ohnoesvaxxeenzeetbabeez and they need to follow their GooglePhD protocol to rescue them and need YOUR MONEY to do it? That particular faction shouts the loudest. Note how few autistic people are served by "awareness".

3. Please be AWARE that autistic people are just that, PEOPLE. We don't need the dehumanization that nearly invariably comes with the "human interest" stories. Even if we don't talk, we can hear and pick up on the attitude that exudes from these pieces.

4. Please also be AWARE that we are AWARE of autism year round, and thus don't necessarily feel the need to do more than we do every day-namely, being ourselves. Conversely, if other people happen to notice us being ourselves more during April, that isn't necessarily us "acting out", but so called awareness making people more aware or self conscious or whatever. The rest of the world can suck it up and deal.

5. Consider that we may not want to read every article on autism, go to every (or even ANY) autism event, or watch every program. See dehumanizing, above. This holds especially true for anti cure folks and those of us who have more than had our fill of the dehumanizing vomitous pity party garbage.

6. Be AWARE of not just the "valiant struggling parents", but also the children and adults who are doing well, the ones who aren't doing well, and the ones who are doing what THEY consider well and are happy.

7. Be especially AWARE of the autistics who's parents, caregivers, and others bought into their own self pity and have done terrible, often irreversible things to them. NEVER EVER forget those who are no longer with us, for the crime of being autistic.

I really hate Autism Awareness Month. For my part, I will be being myself and perhaps breaking out a couple of my more pointed neurodiversity shirts. That's about it. I don't do big bursts of awareness.

IACC Stuff, Courtesy of ASAN

2008-03-15T20:36:00.002-06:00

According to reports, a group of autistic folks showed up at the IACC meeting and gave them a bit of hell, which they richly deserve of course. Ari Ne'eman is trying to get a group together to go to the May meeting, if you're interested email him at aneeman (at) gmail (dot) com. Emailing me won't do a blessed thing, I'm across country.

Yaaay ASAN and WrongPlanet and everyone who went and gave them hell!

Ari also sent his statement to be reproduced on blogs. Please note these are not in any way shape or form my words, I am nowhere near this polite.

Here t'is:

Members of the Committee,

Thank you for this opportunity to give comment on the IACC’s important work. My name is Ari Ne’eman and I am here today in my capacity as the President of the Autistic Self Advocacy Network (ASAN), a volunteer non-profit organization run by and for adults and youth on the autism spectrum. ASAN works to promote the autistic culture movement and other opportunities for individuals on the autism spectrum to interact with each other as well as work to improve the representation of the autistic community in public policy deliberations about autism and disability affairs.

I would like to take this time to reiterate and elaborate upon the comments I made at the last IACC meeting, encouraging this committee to re-orient its research agenda in a fashion that will comply with the perspectives and goals of the community of individuals on the autism spectrum. The first step towards this is to follow up on the appointment of Stephen Shore and add additional autistic representatives to the IACC and its workgroups. The concept of “Nothing About Us, Without Us” is a long time pillar of the disability rights movement and it should be respected in autism policymaking, just as it would be with the drafting of policy aimed at any other minority group.

In addition, we encourage this committee to focus its research towards measures that will improve the opportunities for communication and quality of life for autistic individuals, by funding research into Augmentative and Assistive Communication (AAC) technology, early education and service-delivery methods in areas of employment, independent living, housing and other important spheres for autistic individuals everywhere. I’m concerned by the fact that the autistic people, family members and others who make up ASAN’s international membership continue to face skepticism about the very existence of autistic adults. The media portrays the autism spectrum as something new only existing amongst children. Yet, the adult population continues to lack needed support and awareness. State vocational rehabilitation agencies and other aspects of the developmental disability service-delivery infrastructure are ill-informed about the needs of adults on the spectrum. Furthermore, there is a pressing need for more research on how to best serve both adults and youth on the autism spectrum in fields like educational methodologies, restraint reduction, positive behavioral supports and other areas that take practical steps to improve access, inclusion and respect for our community.

I was diagnosed on the autism spectrum at age 12, and I have been fortunate enough to benefit from a family that has been accepting of my differences and supportive of the educational services that have helped me develop. Unfortunately, not all children on the spectrum are receiving that acceptance and support. The current culture of despair and intolerance promoted by groups like Autism Speaks and Generation Rescue does not contribute to positive outcomes for autistic individuals. Statements that devalue autistic life, like those made unapologetically in the fundraising video Autism Every Day by IACC member and Autism Speaks Executive Vice President Alison Tepper Singer, do not benefit people on the spectrum and contribute to an environment of stigma and fear. Ms. Singer’s comments, where she states she considered driving her daughter off the George Washington Bridge, refraining "only because of…the fact that I have another child," are of great concern, particularly given the murder of an autistic child by her mother a mere four days after her statement. The inaccurate and incomplete picture of the autism spectrum that Autism Speaks has chosen to promote for fundraising purposes contributes to the environment that makes these atrocities possible. That is why the autistic community continues to be concerned by Ms. Singer’s presence on this Committee and the message her selection sends to people on the spectrum, our families and our supporters. You cannot help us by demonizing our neurology and stigmatizing our very existence.

Genetic research promoting a prenatal test for the autism spectrum is also of grave concern. It should be noted that Dr. Joseph Buxbaum, an Autism Speaks-funded researcher, believes that a prenatal test for the autism spectrum could exist as early as 2015 – in fact, genetic testing for some types of the autism spectrum is already available. There is significant evidence that such tests will and are leading to the use of selective abortion to engage in eugenics against the developmentally disabled. It should be noted that approximately 90% of fetuses that test positive for Down Syndrome are aborted. While a prenatal test for the autism spectrum is significantly more complex to develop, once it is in existence the current climate of fear makes a similar result likely. While we do not hold an opinion on the abortion debate in general, we are deeply concerned by any effort to eliminate a particular kind of individual from the gene pool solely on the basis of neurology. Taxpayer funds should not be going to eugenics.

I consider it a grave human rights concern that many autistic individuals continue to be unable to communicate because the assistive communication technology and educational methodology research that could help many more adults and children convey their needs is being ignored in favor of eugenically oriented genetic research aimed at finding a “cure” for a natural and legitimate part of human genetic diversity. The autism spectrum is not a recent epidemic but a neurological condition that has always existed, but is only now being diagnosed at incidence rates that approach accuracy.
The autism spectrum often comes with significant disabilities that require substantial support. However, rather than trying to eliminate us, we can and should be taking steps to mitigate those disabilities while empowering the strengths that we possess and respecting our legitimate place in the spectrum of human diversity. We encourage this Committee to take the first steps towards shifting the main buzzword about autism from “cure” to “communication” and ultimately, to moving the dialogue about the autism spectrum to one of acceptance, inclusion and, above all, respect.

Thank you for your time. As always, “Nothing About Us, Without Us.”

OK, now we're back to my words

Thank you to everyone who is able to attend and continues to do so. We can see to it that they listen through sheer force of perseveration.

More randomness with much disjointed ranting.

2008-03-11T19:29:00.003-06:00

A) I am not touching the so called "concession" because it's all over the blogs and obviously isn't one. Anyone who wishes to know my thoughts on them can find them pretty easily. Additionally, the mercury malicia has turned into pretty big asshats over the facts of the matter, and frankly I am sick to shit of them. If they want their pity party, FINE. They can go have it on an island where no one has to be exposed to their unvaccinated selves. I'm sick of the nastiness and people trying to put words in my mouth and I am ready to start posting private emails over it. Science is on MY SIDE, not Geier Geier Liar Liar's or Kirby's or Wishful Thinking's side. Get over it.

B) Speaking of posting private discussions, there's a public one. This ever so nasty woman at http://www.autism.about.com/mpboards.html under the topic "What are you doing for autism awareness?" took credit for the AutismWeeps video that they didn't ask us about. It got nasty. She called me a troll because I asked her if she ever asked adult autistics. Apparently she didn't need to because, like, we don't matter. All that matters is what SHE wants because the parent is always right (Joel posted about this at http://www.thiswayoflife.org, though he is infinitely more polite than I am). So I asked the guide, who, incidentally, I PREDATE ON THAT SITE BY ABOUT 7 YEARS (and her predecessor. And her predecessor's predecessor) what she thinks about the whole attacking autistic people for daring to have opinions. Yeah. Um. I think I might just throw the whole discussion on here, because Lisa Jo Rudy is sure quick to ask us to shut the hell up when oh noes we aren't "supportive"/kissing asses, but she sure has no problem with letting people call autistic persons trolls and cussing at us (really. I swear like a sailor in meatlife and it makes me look sweet). The hypocrisy is beautiful. So if an About.Com discussion ends up on here, that's why. I'm sick of people's crap, even more so than before, and ready to play dirty.

C) I STILL haven't heard back about my MRI because Harborview is apparently incompetant. "Oh, we sent it to your doctor". Mhm. Right. Ok. So where is it? My doc hasn't called me. Harborview was astonishingly NOT forthcoming. If they lost it then they can pay to send me SOMEWHERE ELSE in the event I need surgery-if they can't handle a simple MRI (which they had difficulty managing to schedule) there is no way in HELL they are cutting open my head.

D) Out of nowhere my eyes have gotten really really really bad. This makes C even more annoying, because Medicaid only pays for one pair of glasses a year. It isn't like I can get them fixed then find out about my head and get them re-fixed. Doesn't work that way.

E) I moved apartments. Moving sucks. Getting lost also sucks. But I like where I am now, it's a nice little (emphasis on LITTLE) place. GABA isn't so approving, she keeps puking on the floor. Change Is Bad. But I found gluten free frosted flakes for REALLY REALLY REALLY cheap so that pleases me waaaaay too much. It's the little things.

F) The technical term for number of books I have is "shitload", in case anyone was wondering.

Yeah, that was random and disjointed, but I didn't fall off the planet or anything...yet...

Whiny medical update that no one cares about probably

2008-01-23T15:44:00.000-07:00

This is months of medical crap backlogged and why I've been slow on the blogging.

Basically, I've been sick since October, and dizzy. Except I don't get dizzy. But apparently I do now, from existing. So that's a problem no one has an answer for (ex neurologist said "it's just a migraine" but I could be bleeding from my eye sockets and he'd say THAT was a migraine too, hence EX neurologist).

Ok. So there is that and the usual shit, right? Then there is my foot which has been a constant source of pain, irritation, and screaming to shatter glass since June. And the charming doctors who didn't believe me that the screws were placed wrong or escaping or something of that sort.

I sure wish I had bet on that, because 2 months after I asked for a referral (3 after the first time I asked for one from the ER) to a new orthopedist--I AM RIGHT. They're coming OUT. They are in a bad place and need to NOT be there. So another surgery on my foot, and another wicked looking scar. I hope they let me keep the screws.

M'yeah. In other things doctors didn't take seriously: Adrenal failure is fatal if not treated. GP is not getting that, still waiting on refill. New neurologist needs to either pass the torch or refill my old meds, if he isn't going to do that he needs to be a BIG GROWN UP and tell me so. You can't just not refill someone's 4 ACs and not tell them, leaving them to figure out the titration schedule. Doink. He did give me oxygen for the headaches that aren't migraines or cluster headaches, and it works, ish. But...not refilling meds? Oy.

And then there was the geneticist. Theory on tired, appallingly bad headaches, sick all the time, unexplained sudden onset hypothalmically based endocrine problems, progressive strabismus, and a lot of other stuff that shouldn't be related but apparently is. They need a new MRI to confirm (or 2. or three. Or knowing my luck, 7...) but they think there isn't enough room in my head for my brain, basically. The treatment is neurosurgery. Thrill. And I now know more about it than either neurologist, especially Dr Everything Is A Migraine.

Just to round everything out, I've got a persistant sore throat and nothing tastes good twice in a row. Because of this I'm eating/drinking more carbs in a day than usually in a week, which is neurologically...odd...yeah, odd is a good word for it.

So, um, that's where I've been and any extra doses of cynicism are coming from. Just color me pathologized. Or something like that.

For Katie: NEVER forgotten.

2008-01-16T01:11:00.000-07:00

It's been over a year and a half since I first heard of Katie McCarron. She should be entering Kindergarten this fall. She should be with her loving father and grandparents. She should be singing karaoke, giving and receiving hugs, and...well...being the beautiful, precious child that she was born to be.

Unfortunately sometimes people get in the way of SHOULD. This happened to Katie. Reading the trial coverage in the Peoria Journal Star, which was biased in 2006, has been painful. I can only imagine how much it has hurt for those close to Katie, who cherished her, who rejoiced in her utter joy of being. The Katherine McCarron I was told about loved. She was not in pain. She WAS loved and IS loved. Her mother's "support group"/pity party nonwithstanding, Katherine McCarron is loved and missed by people who knew her and those who wish they had been given the opportunity.

Katie McCarron, your family loves you. The autistic community loves you. The disability community loves you. Sweetie, a whole lot of people who never met you miss you so very much, and your dad and grandpa and grandma aunts and uncles and teachers and I don't even KNOW who else miss you even more.

And I wish, and other people I'm sure wish, that there was something we could DO. Right now all I can do is pray/hope for wisdom for the judge and jury, and send love to your family, Miss Katie. But that isn't right. Because you should be here.

Love and strength to all who miss Katie during this difficult time.

"Awareness" does not equal INFORMATION

2007-12-11T21:14:00.000-07:00

At this point, anyone who reads here who doesn't know about the NYU Ransom Notes campaign hasn't been to a computer in the past few weeks. Therefore, I am not going to further their traffic by linking back to them. They're just counting hits, not reading what the referrers say. Y'all also already know that ASAN is organizing all sorts of stuff against this horrid campaign.

You ALSO probably know that the people defending it-namely those in charge of the shock ya for ya dollah ads-are saying it is OK that it pisses off most of the people who both see it AND are acquainted with a clue because "it raises awareness".

Ah, awareness. Kind of like those Middle Ages indulgences, you can do whatever you want and get out of the consequences, so long as you invoke "awareness". A whole lot cheaper than building a cathedral, too.

Newsflash: "Awareness" isn't the same thing as "information". Every Condition Du Jour has had the "OMGZ IT EATS PEEPLEZ!" days. I remember that they were going on with autism WHEN I WAS IN *HIGH SCHOOL*. I graduated in 2001. That was a long time ago, yes?

To contrast with 2 other hysteria campaigns (only these turned into information, which appears to be anathema when related to autism)...please note that the only thing most of these conditions have in common with autism is that they had a hysteria campaign that I am old enough to remember:

-HIV/AIDS: I remember this campaign starting when I was about 7. People being afraid to catch AIDS from toilet seats/kisses/hugs/paper towels/the air. Seriously. Thus, it became impossible to blow one's nose in any public restroom. Several years later, I was in MAYBE 4th or 5th grade, there is a feature in American Girl Magazine about a little girl who is HIV+ and takes an antiretroviral cocktail and goes to school and you can't get AIDS from casual contact or the bathroom or anything but needles and certain body fluids. Yeah. Three year turnaround on a disease that is serious shit.

-Cancer: They're bound and determined to say autism is like cancer, here's yet another reason that it ISN'T. I knew that you needed a pap smear and a mammogram or you die when I was in 3rd grade. I knew what they were while still in grade school. The whole public knows signs and has pink ribbons, and has since I was in junior high. There are prostate exam commercials all over the airwaves, including signs that you need one, and in my lifetime they've come up with real facts beyond get a mammogram and a pap smear or you die. Like that viruses cause HPV which causes cervical cancer, and that mammogramming a 32A is a waste of everyone's time and you need an ultrasound instead. And there was that whole Live Strong thing too...

Do they need autism to be more hysterical because it DOESN'T kill people? Is that it? Do they not know how to present anything but negatives? I seriously do not know. Because these were both in the span of grade school (I am so too fried to even be writing this but it needs said now not later) and the autism hysteria has lasted LONGER than I've been in the autism game, which is about 8 years.

Between the "all autistics are children" rhetoric (where's my plane home?) and the "autistics are empty shells of nothing but devestating deficits" I am so disgusted with so called awareness.

I want to see information already.

Ari Ne'eman's comments to the IACC

2007-12-01T18:41:00.000-07:00

Posted with permission and courtesy of Ari Ne'eman of Autism Self Advocacy Network, my comments to follow:

Members of the Committee,

Thank you for this opportunity to give comment on the IACC's important work. My name is Ari Ne'eman and I am here today in my capacity as the President of the Autistic Self Advocacy Network (ASAN), a volunteer non-profit organization run by and for adults and youth on the autism spectrum. ASAN works to promote the autistic culture movement and other opportunities for individuals on the autism spectrum to interact with each other as well as work to improve the representation of the autistic community in public policy deliberations about autism and disability affairs.

As an individual on the autism spectrum myself – I am an Asperger's autistic – I am heartened to see the interest and resources being directed towards the autism spectrum as of late. Unfortunately, as positive as the strong awareness campaign about the autism spectrum could be, it is counterproductive without an equally strong commitment to autism acceptance. Upon the passage of the legislation authorizing this committee – the Combating Autism Act – a prominent parent-lobbyist announced "a federal declaration of war on the epidemic of autism." The problems with that statement are many. A "War on Autism" approach is not in the interests of people on the spectrum. It offends and alienates the autistic community. This is the community of verbal and nonverbal individuals on the autism spectrum – distinguishable from the autism community of the parents, professionals and others who often claim to speak on our behalf. We are usually the last to be consulted on autism policy; the autistic community should be the first to have input into policymaking about our own futures.

"While the rhetoric surrounding autism has focused on the idea of cure, many people on the autism spectrum are not interested in pursuing as a goal making autistic individuals normal. Instead, we agree with the opening language of the proposed Expanding Promise for Individuals with Autism Act, which states "Autism is a natural part of the human experience." This is NOT to deny in any way the very real and pressing hardships placed on families and people on the autism spectrum. Instead, it is to promote research that will truly do something about it. We encourage the IACC to re-focus its research exclusively on how to improve the quality of life, communication, independent living and educational opportunities of America's many autistic citizens.

The promising research leads are already present and are not being followed up on, due to a misguided belief that the goal behind autism research and advocacy should be to, "make autism a word that we only see in the history books." The Autistic Self Advocacy Network encourages the IACC to make the focus of the federal research agenda Augmentative and Assistive Communication (AAC) technology, positive behavioral supports, restraint reduction methods, adult supports, educational inclusion, employment and independent living services and other possibilities that provide tangible improvements in our lives. If one-tenth of the attention and funding now focused on finding a cure was put towards the promising possibilities in assistive communication technology, many people on the autism spectrum today viewed as "low-functioning" would be communicating successfully today.

I applaud the IACC for beginning to fulfill its moral obligation to have autistic representation on the Committee. The inclusion of Stephen Shore, a respected self-advocate with a long history of contributions to the autistic community, is a great first step. At the same time, I note that there remains a distinct under-representatio n of autistic representatives on IACC as compared to the number of parent and professional organizations and individuals represented. I hope to see the inclusion of autistic self-advocate organizations in the near future, such as Autism Network International and the Autistic Self Advocacy Network.

We must also express concern over one of the public members appointed: Allison Tepper Singer of Autism Speaks. Ms. Singer's comments in the fundraising video Autism Every Day where she discusses refraining from driving her daughter off the George Washington Bridge, "only because of…the fact that I have another child." sparked massive outrage throughout both the autistic self-advocate and the parent community. It should be noted that four days after the release of said film a mother did in fact kill her autistic daughter and that there has been a notable increase in such murders in recent years. Many self-advocates and parents believe Autism Speaks to be morally complicit in these murders through its continued dehumanizing advertising, encouraging a lesser value for autistic life.

We live in a society where the lives and opinions of individuals with disabilities are viewed as less valuable and less deserving of basic human respect than those of other citizens. The IACC must break with that mindset and we encourage the Committee to pursue a new direction in autism research to maximize quality of life and opportunity for every person on the autism spectrum, not by insisting that we attempt to become what we are not but by recognizing that – with the right services, education, and a supportive environment - we can succeed as we are.

-Ari Ne'eman, The Autistic Self Advocacy Network, President

posted with permission

My comments, as promised/threatened:

Thanks to Ari for being one of very few autistic voices in the room. Nice of them to talk about what they want to do about us without asking what we think about it, huh? Well worded, articulate, and FAR more polite than I would have been.

The especially important bits: The ones about the Combating Autism Act being serious bad wording and misguided legislation (I personally thing it's a bit of American Eugenics on it's way back into style) and the paragraph on Ms. Singer being an atrocious choice for a committee on autism ANYTHING in light of her murderous views (see "Kassiane would have breathed fire and shown them all what a counterproductive personal attack looks like" for more on that one). I REALLY don't like AutismWeeps and the more that such committees hear that LOTS AND LOTS of people were appalled by their propoganda-that the death wish declarations aren't going to go away-the better. Especially if people can say it and leave the targets intact, decapitated people just don't LEARN!

I'm not a fan of functioning labels, unfortunately most of the world is. They call US black/white thinkers. Bleh. The emphasis on, "like woah! We grow up! Holy crap!" (in best sarcastic Valley Girl voice-I am SO RUDE about the obvious sometimes...) was also a point well made, and unfortunately probably ignored.

Over at Autism Vox Kristina Chew posted her comments to the committee as well, and some other information--hence the lack of direct links, because it's always updated.

Let's hope the IACC is listening to reason? Please?

Note to users/attempted users of LRE II

2007-09-21T20:36:00.000-06:00

If you've attempted to use LRE II and the registration email hasn't come through, it could be that your confirmation bounced. Because me doing something about this is a royal pain in the ass, well, I'm not. And I don't want the spammers getting my other email anyway. So please add rettdevil.org to accepted domains BEFORE registering. If you havent been able to post chances are you've been deleted by now, unfair as it is...

...unless you're one of the people who we haven't been able to activate. Mea culpa. I'm a techidjit and admit it. Between that and too many Life Situations Spockette is handling the tech stuff and she has her OWN Life Situations to deal with. But if stuff is bouncing it isnt even going to get to that point.

This is your LRE II public service announcement, thank you.

An autism society helping autistic people? Cool...

2007-09-09T18:49:00.000-06:00

Regular readers kinda know that my life is in the shitter, to use the technical term, right now. In my desperation I did get ahold of my local autism society chapter, as the ASA says to do (though they're usually talking to parents). Just for a steer in the right direction...subsidized housing, help with forms, help with finding work, help with hooking up with other autistic people, whatever. I wasn't expecting any sort of answer to be honest, and I CERTAINLY wasn't expecting what I got.

I got an email asking if I was ok. I answered that no, really, between the financial situation, the three cats situation, and the damn my foot hurts situation I wasn't. Ok. Then I got another email asking if I was up for a visit and if I needed food and cat food. Hot damn.

Not only did they ASK, ASA-Washington, Spokane Chapter CAME BY with food I can eat (gluten free) and a bag of food for the cats. The representative also gave me directions to their meeting and told me when it is, and told me of a few potential opportunities with the local kids.

Well shit. Why can't they run all the ASAs this way? Yeah, there's some stuff on the website that raises an eyebrow, but a lot more of it is about helping than about changing than I've seen on a lot of autism organization sites. More importantly, perhaps, especially if this is a pattern, they have demonstrated that they continue to be OUR society--the society for autistic people--after we turn 18 or 21 or whatever and are out from under our parents' roofs.

So for today, kudos to ASA-Washington, Spokane chapter. It's the little things that matter, just as much as the big things, sometimes.

Pity, Exploitation, and the Medical Model of...Everything.

2007-09-02T22:06:00.001-06:00

Labor Day weekend. Swimming pools, barbeques, parades, a day off work...and...

That infernal telethon. See for more about said infernal telethon. Jerry Lewis, yeah it sounds good to say you're helping a charity, but your dirty mouth says more. Anyway.

What does MDA have to do with anything else I talk about? Well. Let's see. There's:

a) Pity. MDA uses exclusively children to get pity to keep those donations rolling in. Someone living a full life, even if it isn't your standard life, isn't going to make the big bucks. In the autism world, we have parents taught to pity themselves for having a child who isn't typical, to the point of wishing they hadn't had that child or spending hundreds of thousands of dollars trying to make a dream child exist. Those same kids used in autism ads are shown at bad times of day, followed with cameras till they do something "horrifying", and probably grow up to look a WHOLE lot different than they did as children. Universally, they develop. So do the kids with muscular dystrophy, Rett syndrome, mitochondrial diseases (and yes, I know a lot of these thngs are progressive but there are still adaptations to be made). And most of the time they grow into ADULTS. Not children. Guess what else? We are neither demons nor angels personified. We are people. We are not here just to be fundraising tools, we are here to live lives.

b) Exploitation. Yeah. Those kids. Raising kids to believe that who they are is less than satisfactory really sucks, people. In fact, it'd be abuse if they were typical children. Then putting them on TV to talk about how their lives are sooooo miserable because they're defective? Or videoing them or interviewing their families to talk about how their condition makes their lives soooo impossible? HELLO! We wouldn't do that for race, religion, country of origin. WHY are we doing this for conditions? And of course there is the exploitation of families who just don't know better looking for a cure, because they are lead to believe that being anything but Standard Issue isn't acceptable? Damn. That's a lot of exploitation, all from the medical model of differences.

It's also interesting to note that children are the only ones they ever ask about things, and parents. It is easier to get children to agree that they are sick and damaged I suppose. Plus adults just aren't as cute on the posters for the most part. It isn't like we die off in vast swathes for most conditions (MD isn't usually deadly, mito can be but often isn't IDed till adulthood even, autism isn't deadly unless your parents off you, Rett only has a slightly increased risk of death, et cetera et cetera...). Adults just don't bring in the money.

Why not make disability something that socially IS instead? We're all going to be disabled someday unless we are struck by a truck or lightening or a flying gymnast who was previously invisible (oh wait. my foot won't let me do that anymore. THAT risk is taken care of...). Making issues medical that aren't makes people feel defective when they aren't-they're just different. It also takes financial advantage of vulnerable populations, and takes up resources from actual medical issues.

Treat medical problems medically. Treat social issues socially. Being different isn't medical. It really is that simple.

Still alive...ish...

2007-08-27T19:37:00.000-06:00

This isn't much of a post, sorry.

Right now I am being piled on by three cats. I have a 5 inch scar on my ankle, which has healed to be significantly stiffer than the other. Hopefully this will get better with time, though titanium is not as limber as Ehlers Danlos tissue by a long shot. The scar still looks pretty bad, almost as bad as it did at 3 weeks (it's been nearly 3 months) but it doesnt hurt so much as itch. I was correct in that my bars skills improved tremendously, when I can get to the gym. My other events, though, are weakened. It is of no importance given than life is trickier than gymnastics right now.

The job interview process makes elite gym look easy. So does getting a job without a phone--doable, but not easy. I've been sick so it's time to start fighting the fight again. The kitties are a mixed blessing in that I adore them, but they eat. And go litterbox.

Oh and my anti-ad: virgin mobile sucks. Overcharging for stuff that doesn't work. But the credit union across the street was very nice to me today.

If I don't sound coherant, well, my brain isn't too with it today. If you need to know why, either you do or you know that it's acceptable to ask why.

Kassiane is now accepting suggestions from people who are not asshats. Kassiane very much appreciates her friends, even if autistic people aren't s'posed to...