Although actually the only time I really want to speak, is so that people would not consider me extraordinary in some way because I type. But that is a matter of blending in, and of other people’s prejudices. It is nice to not be noticed and singled out. But that wouldn’t really be sufficient reason to truly want speech, more like a passing whim that is borne out of various internalized crap that I don’t really need to dwell on.

I am very aware of how the world treats my natural form of communication. I would have to be incredibly dense and naive not to notice it. But is it wrong to point out that something is wrong, just because it’s unlikely to change? Do you think that pointing out something is wrong means that I think it will be easy to make things different? But we have to start somewhere. Sign language used to be considered vulgar, animalistic, not true language, and inferior. Someone had to change that. And who else is going to do it but someone essentially bilingual? It is harder with the languages of autistic and other cognitively disabled people, because they are not formalized the way sign is for the most part. But it is no less important.

I made the video for a little girl who was forcibly mutilated and some of the excuses given were that she had no language, personhood, etc. It wasn’t about autism, it was about something broader. People in her position have little protection from those who think their thinking and their language and their personhood is the only kind in the world. Will saying “That’s just the way it is” ever lead to even a tiny bit of justice for people in that position? Will treating those of us who try to change things as if we don’t understand how bad things are (when in fact we tend to be more aware than others of how bad things are), help anything?

“Doing what’s right for them” is one thing. But the problem is that there is such a thing as right and wrong. And some things are wrong in some situations, even if some people think they’re right. My online friend Kassi and I are both on Prednisone, which among other things can suppress immune function. Kassi just spent a month in bed, cracked five ribs coughing, got severely dehydrated, and had multiple seizures, because of being exposed to an unvaccinated child who passed a disease to her. Certainly that child’s parents thought that they were doing the right thing in “preventing autism” (even though they probably weren’t), but how does that weigh against the harm done to Kassi, and the potential harm done to me and others like us in this regard? We depend on other people getting vaccinated in order to survive.

Which is to say, nobody lives in a vacuum, there’s no such thing as a decision that does not affect others. It’s all well and good to say that people can do whatever they want. And within certain restrictions, legally, they can. But it doesn’t mean that everything anyone wants to do, or everything anyone thinks is right, really is right. And it doesn’t mean that the choices a person makes “personally” don’t affect other people just because someone labels it a “personal choice”.

So basically, I don’t buy that the things people do are harmless. Of course, nothing anyone does is fully harmless, there will always be consequences, good and bad, of any action. But it’s important to look at what is the least harmful thing to do. Good intentions help but they’re not enough. People have to look at why they’re doing something, what the consequences are of what they’re doing.

My intellectual background in this matter, by the way, is from the disability rights movement, and the self-advocacy movement, and a long study of the history of things like this and more. There is a lot of context behind everything I’m saying, that may be unfamiliar to people who don’t have that background, but is definitely there and definitely not formed out of nowhere.

So, no, I don’t see it as good to just let people do and say harmful things without comment, and I don’t think there is any particular virtue in neutrality.

-Amanda

There’s no reason for parents to chelate a kid who is not heavy metal poisoned, and the only reason this batch think there kids are poisoned is that they are all shipping urine and other samples off to a mail-order quack lab. Like how hard is this to figure out? Not hard. Try again.

There’s plenty of good information on the quackery related to chelation and high dose vitamins and other garbage on reliable websites.

You can find loads of factually supported information on Kev’s blog and on mine (autismdiva.org). Personally, I resent you using Adam’s photo as you did. I hope his mother tells you to take it off your blog. His mom is my friend, too.

I really resent you stepping into the middle of this mess and acting like you know enough to comment. Your careless words and Scoble’s could cause an autistic child to be harmed by dangerous treatments, do you understand that?

You think Amanda is so difficult to watch? Go talk to her on her blog ballastexistenz and learn something.

Here’s the problem Zoli: “respect and admiration for the parents” … but it’s not ultimately about the parents and that’s what Scoble missed. There is a big problem with framing the entire issue around the parents because, unfortunately, some commenters use it to distance themselves and some parents persist in taking the admiration and repect given too far.

For example, in distancing themselves, you’ll hear things like: “These parents are my heroes”; “You’re a Saint, I don’t see how you do it”; “I could never have an autistic child, because they say God never gives you more than you could handle and God knows I couldn’t handle that.” These are the people who help stereotyping and bigotry to persist by making a “difference” always be about “the other”.

Then, there’s those parents who take it too far and tell the camera how they were going to drive their autistic child off the GW Bridge, but didn’t due to their “normal child” at home (Alison Tepper Singer of Autism Speaks) and then those who encourage those kinds of statements by giving props to those who make them (Lauren Thierry, producer, ‘Autism Everyday’).

But really and truly it’s not about the parents, it’s about the kids. The kids who have autism … in all of its flavors. It’s about those kids getting the respect and admiration they deserve. It’s about those kids getting, ultimately, to live the kinds of lives they want to live — not the life that reflects merely what their parents may see destined for them.

To describe a certain group of people to CAUSE another group to experience THEIR lives a being “hellish” does potentially foster hate toward that group. I found Scoble’s ignorant blog post to be something akin to a hate speech toward autistics. Moreover, I found Scoble to be a bigot. Further, he certainly makes it abundantly clear that he does not want it to touch his life.

So, yes, I will stand up for my child’s rights, his humanity, his very being when I see hate directed toward him. AND that’s what I think Scoble did and did so in such a cavalier manner. He did owe it to his reader to do a little more examination than he did, and for not doing so, he should apologize to his readership … and to all those on the autistic spectrum.

It’s good, Zoli, that you went a little further than Scoble by looking past the two movies you saw. I’m sure you wouldn’t want others to judge the very essence of your being (by, say, your ethnic group; religious affiliation or profession) based upon a couple of Tom Cruise and Bruce Willis films, would you?

http://www.vetmed.ucdavis.edu/cceh/pubs/vandewater.pdf

http://autism-prevention.blogspot.com/

“Megan was born on 17-02-00 weighing slightly more than usual. The first few months of her life were totally normal- we didn’t feel concerned about her health or well-being at all. That changed however when she had her DTP jab.

I know there’s been a lot about the jabs (particularly the combined MMR jab) in the news but we (or rather I, Naomi was a lot more dubious than me but I managed to convince her) decided to go ahead with it and on the night of her first lot of jabs Megan began projectile vomiting and developed a temperature that peaked at 102 degrees. We phoned for an Ambulance and took her to A and E where they brought her temperature down, then told us they couldn’t find much wrong with her. We were relieved but by the end of that week we knew something was wrong with Megs. She seemed subtely different. There was nothing you could put your finger on as such but the difference was there, she was late walking and was uncomfortable around others.

I’m sure that I’m not the only parent of an autistic child that just doesn’t know what to think anymore. We believe that the 3 in 1 jab Megan had triggered her autism and we also believe that there was mercury used as a suspension fluid in her DTP jab.

So why exactly is the Thimerasol (the mercury preservative used in the jabs) so bad in the whooping cough vaccine that it warrants removal of the vaccine and yet the Thimerasol in the DTP (and plenty of other) vaccines is not considered an autism causative?

Maybe I’m missing something here but the evidence for me is mounting that the Gvmt in this country need to urgently investigate mercury based vaccines of all kinds.”

***

For some parents, I think the giref is so overwhelming that they choose to believe autism is somehow part of the natural order of things and should just be accepted. They don’t seem to get that many of us accept and love are children, but that we are moving mountains to address the very real and geneuine medical issues they are facing that are keeping them from ebing their true selves, much as we would pursue eye surgery if it allowed a blind child to see.

JB Handley

http://www.generationrescue.org

http://www.generationrescue.org/vaccines.html

To read the published science supporting the position of those of us who believe vaccines have played a role in our children’s autism, read here:

http://www.generationrescue.org/studies.html

Here’s what California’s DDS said in a report recently:

“There is no evidence that a loosening in the diagnostic criteria has contributed to increased number of autism clients…we conclude that some, if not all, of the observed increase represents a true increase in cases of autism in California…a purely genetic basis for autism does not fully explain the increasing autism prevalence. Other theories that attempt to better explain the observed increase in autism cases include environmental exposures to substances such as mercury; viral exposures; autoimmune disorders; and childhood vaccinations.”

JB Handley

Generation Rescue

Please note: Nasty insulting posts guaranteed to follow!!

I’m running now, will respond to some of your points later, just a quickie about Amanda’s video now.

“Disturbing” was a bad choice – the point I wanted to make that after all the cutie-kiddie videos this one is not easy to watch.

And yes, I did get the point, that’s why I am calling her coherent and logical – I should add intelligent. She thinks, senses and communicates. But the world does not understand her communication. Unjust or not, the “world” does not learn her language, so she has a hard time really communicating. I’m not rejecting her, belittling her, simply saying that if the “magic pill”to enable her to speak existed, she would probably like to take it. That’s why I don’t understand why those who seek that “magic pill” should be stopped.

But I am not advocating quackery. You may have noticed I am not taking sides… how could I, why should I? I am not assuming I know anything… you’ve probably missed this part:

“What prompted me to do a little “research” (I’m hesitant to call it such; half a day into this is nothing compared to the ongoing research that becomes a lifestyle for parents involved) …”

I am simply asking that both “sides” let the other do what they think is right for them, without enforcing their views on the other.

Will be back with more…