Saturday, June 21, 2008

neurodiversity advocates who live in glass houses department

Well that well known neurodiversity activist amanda Baggs is at it again.

You can check out her latest blog entry: http://ballastexistenz.autistics.org/?p=542

In this blog entry Amanda is criticizing autism speaks because they seem to want to protect their copyright infringement rights from those in the neurodiversity community who want to parody them. Somehow Amanda and others find this objectionable and claim that this is because Autism speaks wants to stifle points of view of autism self-advocates who disagree with them.

One thing I read that interested me was that Larry Arnold had acquired a domain name with autism speaks in it. Larry, another well known neurodiversity who I understand takes umbrage of controls in autism studies who don't have autism being described as healthy. He seems to think someone with autism is not unhealthy. Why this is so baffles me. He also claims that this site will be used for self-advocacy and not NT bashing. Sometimes, though I wonder what the difference is. From what I have seen of the neurodiversity movement it seems the vast majority of their activities is being abusive to parents who wish a cure for autistics and disagree with them, so I am not sure what the difference between the two is.

More Germane and to the point is that Amanda may not be aware of the fact that autism speaks has a message board www.autismspeaks.org On this message board, they have a very loose comment moderation policy and only restrict people from using profane language. NT parents are constantly bashed in this forum as is autismspeaks itself. They don't seem to mind this. Constantly neurodiversity advocates protest a non-existent cure that autismspeaks wishes to find. The people who moderate the autism speaks message board don't seem to mind these activities by neurodiversity advocates at all. I think Amanda, who David Seidel has said in one of the posts does not read this message board, should be made aware of this. I have sent Amanda an email explaining this. She might find out about this blog entry also. One person who answered her comments is this young man (about 21 I think) named beau who has autism and is a neurodiversity advocate who constantly writes anti-cure rhetoric and other negative things on this board, yet posts on Amanda's comments that Autism speaks stifles opinions from autistics who don't agree with them. Seems very strange that he would say something like this since i dont think any of beau's posts have been censored on the autismspeaks board.
Amanda on the other hand, has been very active in ANI, a neurodiversity organization which promoted internet censorship and would not allow people to make any comment that disagreed with them on their internet mailing list. I seem to remember autistics.org had some sort of similar thing and Amanda said it was not censorship and defined censorship as something else. I also saw that autism hub organizer Steve Dionne was apparently deeply offended that someone would link to my essay, neurodiversity just say no to their signature line in the autism speaks newsgroups and urged them to take it out of their signature line. Also several years ago when I was reading and posting on the usenet newsgroup alt.support.autism, one person wrote that this was "autistic friendly space" and the autistics on the board took offense to anyone saying autism was an affliction that needed to be cured. I realize Amanda may not know about the people allowed to voice their anti-autismspeaks opinions on the autismspeaks.org message board as she may not read it herself as Dave Seidel pointed out. . I wonder what Amanda would think of this.

It seems to me that at least one neurodiversity proponent is throwing stones in a house made of fragile glass.

40 comments:

Steve D said...

You said,
"I also saw that autism hub organizer Steve Dionne was apparently deeply offended that someone would link to my essay, neurodiversity just say no to their signature line in the autism speaks newsgroups and urged them to take it out of their signature line."
A couple of points in response:
I am not an "Autism Hub organizer". I am helping to organize a presentation related to the Hub, but I am just a guy with a blog.

I was offended that someone would use your essay in their signature line, but not for what seems to be the reason you believe I was.
And here is what I said on that forum:
"No, I did not state that anyone should remove their signature lines ...
Her sig line does bother me, and I explained why earlier in this thread."

Jonathan, I respect your POV and the fact that you assert it. I don't agree with many of the things you say, and we are free to disagree in a respectful manner.

I just want to clarify that I objected to Lisa's use of your essay as a tool of division, not that you had written the essay to begin with.

Anonymous said...

"Amanda is criticizing autism speaks because they seem to want to protect their copyright infringement rights from those in the neurodiversity community who want to parody them."

LOL. Yes, that must be it. What autistic self-advocates really can't stand is that AS defends its "copyright infringement rights." Just a few small problems with your hypothesis:

1. You can't copyright the words "autism speaks."
2. The Autism Speaks logo is a trademark, but it wasn't used in either case. The plaintext words "autism speaks" are not a trademark.
3. Satire is protected speech. Even if the web site and t-shirt in question used copyrighted material, it would be considered fair use.

(the same is probably true for trademarks but I'm not completely sure.)

I'm not a lawyer, but many people have pointed out that Autism Speaks is simply using intimidation tactics to silence autistics. Neither "abscout" or whoever made the shirt has done anything even slightly illegal. I think everyone (including Autism Speaks) realizes this but you.

Amanda said...

I have posted about this on my own blog in case anyone else is confused about the difference between true Internet censorship, and having a moderation policy on a mailing list.

jonathan said...

Hi Steve, it still seems like petty censorship to me. You also stated that there were a hundred essays that showed the virtues of neurodiversity for mine. That makes me believe that it is further necessary for me to preach the other side and there should be no objections. I am offended by many of the things that neurodiversity advocates say, but I dont imply people should remove them or not say them. You seemed to be implying that someone should not publicize the other point of view by publicizing my essay.

jonathan said...

Well if people can legally do all these things with autism speaks trademark that all of these people are implying and the neurodiversity movement has any credibility and is not just encouraging people to chase a pot of fool's gold at the end of the rainbow, then the people in this movement should have no problem getting legal counsel to fight autism speaks and then post what messages they want. Apparently this has not been the case. In one of the cases, the one I think that was most publicized the person was a minor who did not even want their parents to know about their parody. If this person that Amanda says should have the right to do this parody that she is claiming and kathleen seidel can get a lawyer to do pro bono work for her or quash the subpoena herself, then the neurodiversity advocates who want to insult autism speaks on their t-shirts, web pages whatnot ought to have no problem successfully litigating against autism speaks.

Though I am not a lawyer either I think the problem is more complicated than autism speaks somehow being able to prevent anyone from posting what they want on their web pages that defames them. If this were the case then the autism bitch from hell from the blog what planet is this, would have been sued and forced to cease and desist in her activities, since claiming that autism speaks is an organization trying to engage in genocide and is exterminating autistic people is a libelous statement and I suspect autism speaks would have legal grounds to litigate against someone on this basis.

I suspect Amanda and all of the other anti-cure advocates would be screaming bloody murder if autism speaks on their message board if they adopted an ANI type policy of not allowing posts they don't agree with on their message board.

Amanda said...

Also, it would be totally within your rights to restrict any of my comments here, if you wanted to.

The fact that you don't want to doesn't change the fact that it would be okay.

It would also be totally within your rights to urge people not to read my writing. That's not censorship. People are free to choose to read or not read whatever they want.

But, say, if you allow all kinds of comments here, even ones that were totally disagreeing with you, even possibly ones that are totally unfair...

...that would not make it one bit better if you went and tried to prevent someone from making a t-shirt saying they didn't like an organization you belonged to.

Them having a message board where they allow just about anything and everything to be posted, doesn't mean that it makes it even one little tiny bit better if they decide to threaten to sue someone for copyright infringement for using the words "Autism Speaks" on a t-shirt.

And other people having message boards where they restrict content in any way they please, doesn't mean that they can't object to real censorship.

Similarly, telling people not to read something doesn't mean they have any less right to object to someone attempting to prevent someone else from actually making the content.

Telling people not to read something, or not to link to something, is not censorship. It does not prevent you from writing your opinions.

Moderating mailing lists or blogs or message boards is not censorship. It does not prevent you from writing your opinions somewhere else.

You seem to have a very black and white view of censorship that is not the reality of it, and then you blame people for not following your very odd definition of free speech (which seems to mean, people shouldn't be allowed to restrict any content in any form anywhere, nor should they be allowed to tell each other not to read things -- and then if they object to real censorship, they must be hypocrites, rather than just people with a far more realistic view of how free speech works and doesn't work).

Amanda said...

I've already said that Autism Speaks can do whatever they want with their message board.

Evidence of Harm, the mailing list, already does the same thing.

I don't complain about that, let alone scream bloody murder.

They have every right to do so.

Also, you seem to be equating all neurodiversity advocates with each other.

That's not the case, that's not how it works.

We don't have some kind of special little hotline where what is available to one of us becomes available to all of us.

We aren't even an organization, or at least not a single one.

I don't even know this Zach person, or if I do it's in passing.

I know Kathleen doesn't know him at all.

So why would he magically be able to find a lawyer just because Kathleen could?

I mean, you make us out to be monolithic, we're not. You're not thinking realistically at all.

Similarly, just because Autism Speaks doesn't attempt to censor everything written by an autistic person against them, doesn't make their censorship any better when it does happen.

That would be like saying that if I were to run out and do something violent and illegal to one or two people who disagreed with me, to attempt to keep them from disagreeing with me, then it would be okay, as long as I didn't do it to everyone who disagreed with me.

That makes no sense.

I've written several times to you that it's totally fine whatever Autism Speaks chooses to do on their message board. If they were to ban anyone who disagreed with them, it's within their rights. Nobody has an absolute right to post there.

I've never, ever "screamed bloody murder" about any organization who had moderation policies that involved not allowing posts from people who disagreed with them. And I know of many, several of which have views closer to Autism Speaks than my own. Why on earth do you think I would start screaming bloody murder now? And why do you think I object at all to those things after saying several times that I don't object to them?

You have a lot of "people would..." sort of statements in what you write. You act like you can predict the actions of everyone else. You can't. And it's not logical to get mad at someone for what you think they would do when there's very little chance that you're in any way accurate.

I still get the sense that you don't actually thoroughly read the views you object to, you seem to just look at little parts of them and then make up things to argue about.

Amanda said...

Also --

Even if it were easy for all of us to find lawyers, why would that magically make it okay to censor people?

I mean, if I had enough self-defense skills to block someone hitting me, it wouldn't make hitting me any more okay.

Being able to quash that subpoena doesn't mean that it was okay for the subpoena to happen, for heaven's sake.

Again, you seem to be making up stuff to disagree with, and not thinking very logically.

jonathan said...

Well, Amanda do you have some sort of proof that Autism speaks does not have the legally correct position in this, from a lawyer or some authority. Apparently the person who did the first parody was not able to prevail for some reason. Apparently Zach's ISP did not like his message and was worried about being put in legal jeapordy which makes me thinnk that whatever he did he or an ISP could be legally liable for.

If these pro cure organizations really wanted to suppress all of the nasty and abusive speech made against them, they could sue the autism bitch from hell with her nasty insulting rhetoric. Certainly her statement that autism speaks is trying to committ genocide is a libelous statement, yet they have not sued her.

If CAN, when it had been in existance wanted to sue you and Laura for your nasty abusive abortion cartoon where you imply that CAN and AGRE were deliberately trying to abort autistic fetuses. they certainly would have had a legal basis for doing so and whoever hosts autistics.org may have forced you to take your web page down.

No neurodiversity is not a monolithic organization, but a lot of the people in these various organiations seem to have the same take on a lot of these things and they seem to think that it is possible for autistics to solve all of their problems with societal acceptance and civil rights movements analogous to what gay people do. If autism speaks has no legal basis for their actions and these neurodiversity organizations have any credibility at all they should have no problem getting a cease and desist order on this activity by autism speaks. The fact they can't suggests to me that the acceptance versus cure movement is just a pot of fool's gold at the end of the rainbow.

Amanda said...

Wait... are you saying that a person's ability to get access to a lawyer is what determines whether their viewpoint is accurate? I don't know anyone else who'd say that.

Also, you seem to be conflating two issues here -- free speech and whether the free speech is accurate.

You would be totally within your rights, to make a picture of a bunch of autistic people sitting in an institution, beating their heads on walls, and put 'autistics.org' or 'ANI' as the logo of the institution.

That's not abusive or libelous, it's just saying you think the organization's views lead in that direction. You say things like that about people all the time.

And if we went after you for writing "autistics.org doesn't speak for me" on a t-shirt, and you couldn't get a lawyer, that would not make you in the wrong for writing the t-shirt.

If someone got legally skittish about it and tried to keep you from posting it, that wouldn't make you in the wrong either.

You're totally allowed to say those things about us (you do it all the time anyway, even up to the point of saying we're abusive and libelous when we're not), and we're totally allowed to say things like that about Autism Speaks or CAN or any other organization.

Joseph said...

Yes, it would be nice to have a lawyer comment on this. Regardless, I don't think your position stands to reason, Jon. Consider, for example, that parody is protected speech in the US. So you could have a T-shirt or a website that parodies 'Autism Speaks' all it wants without it being an infringement of copyright. In the same manner, criticism of 'Autism Speaks' should also be protected speech.

It's completely nonsensical that simply using the name 'Autism Speaks' would constitute copyright infringement. That would mean that this comment is violating their copyright, that your post is too, etc.

Autism Speaks Does Not Speak For Me said...

If Autism Speaks wanted to sell a t-shirt to make money to find a cure and that t-shirt said, "I hate Autism Diva" or "Autism Diva can't speak for us," (not that I would ever try to speak for anyone besides myself, nor have I have implied that I speak for anyone but mysels), guess what? They'd be fully within their rights.

It's called Free Speech.

The t-shirt was expressing an opinion that is protected by the second amendment. The reason Zazzle took the t-shirt off their site is because they are not willing to spend ten cents on defending someone's right to free speech, and Autism Speaks was implying that they were more than willing to spend a hundred thousand dollars worth of their lawyers' time to make Zazzle take it down.

I've seen the same thing on cafepress.com. Cafepress.com will not defend the right of any of it's users to print something in particular. If there's a slightly serious complaint they just buckle and take the design off their website.

Now, if Zach were to take his design to a local t-shirt printer and have 10 or 10,000 shirts printed out and sold them from his garage or from a website. Autism Speaks wouldn't stand a snowball's chance in Death Valley of doing a thing about it, unless they could cause the ISP that held the website that was selling them some grief.

Zach could sell those t-shirts outside the Autism Speaks building if the codes in NYC allowed it. Autism Speaks couldn't do one thing about it.

They are bullies, they are stepping on people's constitutional rights via a crack in Zazzle's way of looking at free speech vs. business, and it's absolutely shocking that you step up to defend them. Why?

jonathan said...

Well to the previous commenters: I am not defending autism speaks in this instance. I don't know what their reasoning was. I am only stating that I don't think Amanda and other neurodiversity adherents who engage in petty censorship should be throwing stones when they live in glass houses.

I don't think Autism speaks actually did or would be able to do anything to stop Zach from making those t-shirts. Apparently one ISP decided the content was not appropriate for their web page because they felt it would put them in legal jeopardy. It is certainly their right to do that. Since Amanda feels that she has the right to engage in censorship on her own web pages, then why doesn't Zazzle have a right to take down content they feel is inappropriate? It seems a double standard to me. Just because Zazzle won't allow Zach to run his ads what is to stop him from going to another ISP and running them. What is to stop him from starting his own web page and buying a domain name saying Autism speaks does not speak for me t-shirts for sale or something like that, nothing.

Also, the question is about the credibility of the neurodiversity movement. Joseph, you seem to believe that because gay people advocated for themselves successfully that the relative small number of autism spectrum believe who believe in this philosophy can do this also if i am not understanding your posts in the autism natural variation blog.

Well, this is ASAN, GRASP, ANI, aspies for freedom, neurodiversity.com's chance to prove they have credibility. The autism bitch from hell on her website seems to agree with this way of thinking. If autism speaks is in the wrong legally, then do something about it. Get a lawyer, advocate the same way the gay people do. Or is it that the neurodiversity advocacy organizations are so weak and impotent that they really can't do anything about it whether autism speaks is in the legal right or not? If the latter is true, then maybe people should not be duped by the neurodiversity crowd that they can chase pots of fool's gold at the end of the rainbow.

As far as whether autism speaks is doing the right or wrong thing or whether they have a tenable legal position in this matter I don't know, but the rest is certainly true and needs to be addressed but no one seems to want to do that. Perhaps maybe because neurodiversity is really a simplistic quick fix and is really impotent to do anything and people are being duped into believing that it is their salvation?

Joseph said...

If autism speaks is in the wrong legally, then do something about it.

I'd love for this to happen. We don't have unlimited resources or that kind of organizational sophistication, unfortunately, Jon. Even though Public Citizen decided to help Kathleen, that doesn't mean that they'll go to the rescue of anyone in 'neurodiversity' (remember, that's a philosophy, not to be confused with neurodiversity.com).

jonathan said...

Then you admit that people involved in the neurodiversity movement and the individual formal organizations like ASAN etc, are limited in resources. Was I misunderstanding your comparison of the gay rights versus autism rights post on natural variation. Maybe I am mistaken but it seemed you were claming the two were apt comparisons and I pointd out that one of the many reasons that it wasn't was because people involved in neurodiversity had nowhere near the resources of the gay community and you kind of pooh poohed that. Maybe I am not remembering correctly I don't know. But, apparently according to your last statement if people involved in the neurodiversity movement have such limited resources that would certainly diminish its credibility in my opinion

Anonymous said...

Limited resources=limited credibility? What? That's officially the most inane thing I've ever heard. EVER.

jonathan said...

Well the neurodiversity movement which claims that autism is not really a disability that autism should not be cured and if a cure were available that a kid with autism should not be allowed to be able to talk, bang their head against a wall, have to live under institutional care for the rest of their life is the most inane thing that I have ever heard of ever

jypsy said...

"Well the neurodiversity movement which claims that autism is not really a disability "

Exactly which neurodiversity movement is that?

Anonymous said...

Seems to me this argument got lost at the beginning.

Where is the line drawn?

If a person has diabetes should s/he refuse treatment under the doctrine of hormonal diversity?

What about obesity?

What about pathological gambling?

What about depression?
- Mood diversity?

Doesn't the answer depend on the heritability index (degree to which the condition runs in families/is genetic)?

Amanda said...

Jonathan: Why is it that you continue to say we don't believe autistic people are disabled, when so many of us have told you outright that we do consider ourselves disabled?

I don't understand.

Dave Seidel said...

Well the neurodiversity movement which claims that autism is not really a disability that autism should not be cured and if a cure were available that a kid with autism should not be allowed to be able to talk, bang their head against a wall, have to live under institutional care for the rest of their life is the most inane thing that I have ever heard of ever

There's your false premise right there. I'd be interesting in seeing even a single citation or link that supports this flagrant misconception, especially since there is no one site or organization that speaks for all those who support rights for autistic people.

jonathan said...

Kassiane Sibley your abusive has been deleted. You have your own blog on which you can constantly be abusive to people and claim that all people who want a cure for autism are murderers of katie mccarron and others. You may post here if you like but I won't tolerate people being abusive to me.

Jypsy- It is the same neurodiversity movement you have been a part of for yours.

Amanda and Dave-you can look at Wikipedia's definition of neurodiversity, you can look at Judith singer's writings, you can look at jim Sinclair's writing in which he says autism is not a disaibility but a different way of being. you can read michelle dawson's TMOB essay in which she compares autism to being gay or being a woman which is the same thing as saying it is not really a disability.

And yes I stand by all my statements. Amanda is being inconsistent by criticizing Zaffle for deleting Zach's t-shirt thingy when she engages in such blatant censorship in all the groups she belongs in. Also the neurodiversity movement says that autistics who bang their heads against walls, who can't speak and who will rot in institutions the rest of their lives unless a cure is found should continue to do so, so neurodiversity thinks it is just fine that severely autistic kids like Dov Shestack should never have a shot at a decent life and just want to personally attack his parents for wishing a better life for him.

jonathan said...

hi jypsy, sorry about the typo, that should have read the same neurodiversity movement you have been involved with for years.

jonathan said...

one more thought to amanda- Disability means different things to people who want a cure for autism and those in the neurodiversity movement. Larry Arnold specifies the medical model of disability versus the social model. I believe for the most part though not 100% that autism is a medical disability with some very slight belief in the social model of disability which says that autism is only a disability because of societal constraints. The majority of neurodiversity advocates seem to me to believe in the social model of disability and that there is no medical model of disability applicable to autism. Another reference i forgot to mention dave is larry arnold's writings of it which he can find in the alt.support.autism usenet news group on the social disability versus medical disability. Neurodiversity advocates go by the social model rather than the medical model and i primarily believe in the medical model. To me this means that the majority (though not necessarily all) don't believe that autism is really a disability

Dave Seidel said...

Wikipedia does not define the neurodiversity movement, or any other movement. Like any encyclopedia, it attempts to provide an "objective" summary of many different things, but does not always achieve that goal. It has some statements I agree with and some that I do not agree with. Do you believe everything you read there, uncritically?

I see nothing on Jim Sinclair's site averring that autism is a disability. On the contrary, xe has for several years made available a copy of xyr accommodations letter, in which xe clearly states that xe is disabled.

jypsy said...

"the same neurodiversity movement you have been involved with for years."

No, absolutely NOT.

This is you hearing it straight from *me* - that is not true, false, lacking in fact.

I am involved with no movement, "neurodiversity" or otherwise, that believes autism is not a disability.

Please point me to anywhere where I claim that.


If you define me as part of this neurodiversity movement then you cannot claim that I, or "we", believe that autism is not a disability.

If you want to point to someone or somewhere where someone in the neurodiversity movement believes this, and you want to use that as "proof" that I believe that, then you had better STOP claiming that I am part of the movement because I obviously am not.

Common sense should be enough on this point. Do you honestly think I look at Alex and see someone free of disability? Have you ever heard Alex speak?

"Also the neurodiversity movement says that autistics who bang their heads against walls, who can't speak and who will rot in institutions the rest of their lives unless a cure is found should continue to do so,"

Please provide the source for that, I don't believe it, not for a single second.

jonathan said...

In the early days of ANI before the internet had widespread use, and I joined ANI thinking it was an organization of autistic persons that I could network with, the idea 14 or 15 years ago, that any person would think that curing autism would be a bad idea would have been absolutely incomprehensible to me and anyone who told me that there were people who actually believed this I would have thought them joking, Jim Sinclair had an our voice newsletter and had other mailers stating very clearly that autism was not a disability buta different way of being. I don't know if it is anywhere on the internet or not, but he really did write this and you can chose to believe me or not.

You asked me to cite one source, I cited several Wikipedia may have the right or wrong idea, i don't know, i just know they clearly state that neurodiversity adherents believe that autism is a normal difference no differen than any other human difference, meaning it is no less a disability than someone who is different in that they weigh more than 5 pounds than someone else. If Wikipedia's definition is subjective, than so must be yours, jypsy's and your wife's

jonathan said...

I don't know what alex is like, i guess that is the second of your two sons who is more severely afflicted. I am not sure what your individual belief is but many in the neurodiversity movement do believe this, and you seem to promote the general belief of neurodiversity.

Jon Shestack has been called a nazi by at least some people because he is trying to raise money so that his son or at least people like him can lead a better life and not have all the problems i mentioned above. My friend matthew belmonte who does brain research who has a brother with autism who never speaks has been called a nazi If a single person who believes in neurodiversity has some sort of solution where these people would not have to live in an institution the rest of his life where he would be able to speak without being cured I sure would be interested in hearing it.

jypsy said...

"I don't know what alex is like, i guess that is the second of your two sons who is more severely afflicted.


Alex is my 2nd of 3 sons (and a daughter) and has a diagnosis of Autism. His younger brother has an Aspergers Dx. I believe you know where his blog is and from there you can watch a good pile of videos of him on YouTube. (Link in the right column)

"I am not sure what your individual belief is but many in the neurodiversity movement do believe this, and you seem to promote the general belief of neurodiversity."

You *do* know my individual believe because I just, very clearly, stated it.

Autism is a disability.

I don't know how I can be any clearer.

Now, by your logic, you can totally disconnect me from ANYTHING you say about neurodiversity because I clearly am not part of your version of any neurodiversity movement.

If you want to characterize my beliefs, please name me specifically so I can defend myself .

"Jon Shestack has been called a nazi by at least some people because he is trying to raise money so that his son or at least people like him can lead a better life and not have all the problems i mentioned above. My friend matthew belmonte who does brain research who has a brother with autism who never speaks has been called a nazi"

That has NOTHING to do with ME or this conversation. Why bring it up?

"If a single person who believes in neurodiversity has some sort of solution where these people would not have to live in an institution the rest of his life where he would be able to speak without being cured I sure would be interested in hearing it."

Please try to stick to the conversation at hand. You stated:

"Also the neurodiversity movement says that autistics who bang their heads against walls, who can't speak and who will rot in institutions the rest of their lives unless a cure is found should continue to do so,"

and I asked you to provide a source because I don't believe it. If you cannot provide a source where ANYONE "says" that then I will believe someone made this up about "the neurodiversity movement" as some kind of slur.

I don't think the onus is on me at this point to provide anything, YOU are the one making claims, not me.

Dave Seidel said...

You asked me to cite one source, I cited several Wikipedia may have the right or wrong idea, i don't know, i just know they clearly state that neurodiversity adherents believe that autism is a normal difference no differen than any other human difference, meaning it is no less a disability than someone who is different in that they weigh more than 5 pounds than someone else. If Wikipedia's definition is subjective, than so must be yours, jypsy's and your wife's

No one owns the concept of neurodiversity, any more than anyone owns the concepts of disability or prejudice. The neurodiversity movement, such as it is, consists of a broad range of individuals with varied beliefs. There is no leader, no organization, no charter, no book of rules.

When you attempt to characterize "neurodiversity" with broad, unsupported negative statements, you dehumanize people by reducing the variety and nuance of their positions into a simplistic amorphous mass of your own invention. You don't deserve that kind of treatment; why should they?

jonathan said...

dave you asked me to cite one source, I cited several and here is another. Andrew Solomon's article which appeared in New York Magazine recently in which he stated the people involved in neurodiversity believe autism is not a disability. I am rather surprised you would not have read an article that largely featured your own wife. When neurodiversity advocates claim that autism speaks is committing genocide and that people who want to cure their children of a debilatating disease which most rational persons believe that autism is are bigots and intolerant of autistics and wish that autistic people could be exterminated etc they are using a simplistic amorphous mass of their own invention. I do not believe that they deserve this treatment from the variety of neurodiversity advocates that give them this treatment either. It seems to me that a lot of people with the neurodiversity message, not necessarily you or all of them are engaging in nothing but hate mongering and hate begets hate so maybe that is something you should think about.

jonathan said...

Jypsy, so you believe autism is a disability. That still does not answer my question. Are you familiar with the concept of medical disability versus social disability? do you believe that autism is a medical disability in and of itself independent of societal constraints? If the answer is yes, then do you enjoy the fact that Alex has medical impairments that don't allow him to speak properly and affect his other activities? If the answer to this is yes and you reject a cure, what do you propose should be done?

jypsy said...

"Also the neurodiversity movement says that autistics who bang their heads against walls, who can't speak and who will rot in institutions the rest of their lives unless a cure is found should continue to do so,"

and I asked you to provide a source because I don't believe it. If you cannot provide a source where ANYONE "says" that then I will believe someone made this up about "the neurodiversity movement" as some kind of slur.


Do I take it you cannot provide a source?

Dave Seidel said...

Of course I'm familiar with Andrew Solomon's article. In general, it was a very good article, but there were parts of it I don't agree with. Do you think that simply because a journalist makes a statement, that it automatically becomes the truth?

You continue to over-generalize, over-simplify, and ignore significant individual differences between people. You keep referring to "neurodiversity advocates" as if they are a single undifferentiated group acting in lock-step and then you make sweeping, overblown statements about them.

jonathan said...

Jypsy, many persons in the neurodiversity movement yourself included have said time and time again that they don't want a cure for autism. Not just for themselves for for their children but for any children. They object to autism speaks doing fundraising and giving money to neuroscientists, geneticists, etc. and seem to think the real purpose this money is spent is to somehow exterminate autistic people or to find ways to abort the fetuses.

Surely you can find thousands of posts like this all over the internet. You don't need me to provide a single source.

If a single person from the autism hub, ASAN, GRASP, ANI, autistics.org aspies for freedom, etc. has proposed a solution to the problem of autistic children not being able to speak, not banging their heads against walls and being able to become toilet trained when the autism is severe enough I am certainly unaware of it. Perhaps you can tell me what can be done in lieu of spending money on neurophysiologic and genetic research to find a cure. All I read about is neurodiversity preaches acceptance and that behavior should be accepted. I am still waiting for you or anyone else to tell me what should be done instead. Until you or anyone else tells me how these problems can be solved without doing scientific research to find a cure or some or treatment I will continue to believe that people in the neurodiversity movement yourself included do not mind that some autistic children cannot speak, can't go to the toilet themselves, bite themselves, run away get hit by cars, trains, drown etc.

Also I am still waiting to find out whether you think autism is a social disability or medical disability.

jypsy said...

"Jypsy, many persons in the neurodiversity movement yourself included..."

No.
Stop.
Go back and read above - "by your logic, you can totally disconnect me from ANYTHING you say about neurodiversity because I clearly am not part of your version of any neurodiversity movement."

If you'll write your comment again without putting me in your "neurodiversity movement" I'll read past your first sentence.

jonathan said...

ok, jypsy lets try this again. You said that you and Alex don't want a cure for him? Assuming a cure were found, would you support Harold Doherty's right to give it to his son even if you and your son don't want it. Do you believe that autism speaks provides funding for research with the intent of murdering autistic people or is it that they want to help people live a better life, so they can speak and they won't engage in self-injurious behaviors if their autism causes them to do so?

Do you believe that autism is a medical disability rather than a social disability?

If you believe that something should be done for autistic people who can't speak and who engage in self-injurious behaviors without curing the autism how do you propose a person would do this, even in the long term without funding scientic research? How can these goals be accomplished?

I think that satisfies your requirement that I ask these questions only of you as an individual and no one else.

jypsy said...

ok, jypsy lets try this again. You said that you and Alex don't want a cure for him?

Alex doesn't want a cure. I don't want a cure. My other son doesn't want a cure. I have no desire to cure my children who do not want cures.

Assuming a cure were found,

now we're talking totally hypothetically because there is no cure for autism

would you support Harold Doherty's right to give it to his son even if you and your son don't want it.

hypothetically-- yes, unless his son doesn't want it.

Do you believe that autism speaks provides funding for research with the intent of murdering autistic people or is it that they want to help people live a better life, so they can speak and they won't engage in self-injurious behaviors if their autism causes them to do so?

neither, unless you consider abortion to be "murdering autistic people".

Do you believe that autism is a medical disability rather than a social disability?

I believe it can be both, depending on the individual and the society they live in.

If you believe that something should be done for autistic people who can't speak and who engage in self-injurious behaviors without curing the autism how do you propose a person would do this, even in the long term without funding scientic research? How can these goals be accomplished?

I never said I was against scientific research so why are you taking that option away? I suppose it could be done the way we did it. I'm sure others have managed to reach these goals in other ways.

I think that satisfies your requirement that I ask these questions only of you as an individual and no one else.

Thank you.

I'd still appreciate a singe source for that claim you made "Also the neurodiversity movement says that autistics who bang their heads against walls, who can't speak and who will rot in institutions the rest of their lives unless a cure is found should continue to do so,"

jonathan said...

Ok Jypsy, two specific sources. You can go to your pal Michelle Dawson's essay the misbehavior of behaviorists and read where she states that a girl who wants a cure for her brother who destroys her property, bites her wants a cure is an intolerant bigot. Michelle implies there should not be a cure for autism only a cure for tolerance. You can read Morton Gernsbachs essay autistics need acceptance not cure. Actually the title says it right there, you don't even need to read the entire essay. They are clearly stating that self-injurious behavior, not talking should be accepted, nothing should be attempted to be done about that. I don't see how else these writings could be possibly construed.

If you were able to accomplish what you are claiming with any autistic person, I don't understand why that would not be a cure. If you really have some method by which severely autistic people could talk, not bite themselves, live independently, etc. I think you are being very selfish by not sharing with the rest of the world. In fact you could probably become a multimillionaire or billionaire if you opened up shop and what you did does not require a medical license. If you really have these tools, then no one would need autism speaks to fund research they are funding, I would agree. I suspect there are many thousands upon thousands of people who would want to know what your secret is including your old time nemesis Harold Doherty.

jypsy said...

Ok Jypsy, two specific sources. You can go to your pal Michelle Dawson's essay the misbehavior of behaviorists and read where she states that a girl who wants a cure for her brother who destroys her property, bites her wants a cure is an intolerant bigot.

You had better supply a quote to back your allegation as "intolerant bigot" does notr appear in that essay (therefore she never said it). When I ask for a source that's what I'm asking for: a quote and where it came from.

Michelle implies there should not be a cure for autism only a cure for tolerance.

No, you certainly have that wrong.

You can read Morton Gernsbachs essay autistics need acceptance not cure. Actually the title says it right there, you don't even need to read the entire essay.

That's what Alex's running shirt says too. So you think Alex believes all the junk you imply is meant by that statement? Again, you are very wrong.

They are clearly stating that self-injurious behavior, not talking should be accepted, nothing should be attempted to be done about that.

You couldn't be more wrong. It absolutely is NOT "clearly stating" any such thing. Remember - I believe those statements and I just told you my beliefs. They contradict your clearly stated assumptions so why not accept you are wrong? It doesn't get much clearer.

I don't see how else these writings could be possibly construed.

And if that is still the case, there's little point in continuing this conversation. It appears you don't want to see any other way but your own.


If you were able to accomplish what you are claiming with any autistic person,

And lets be clear, that would be Alex talking and stopping SIB

I don't understand why that would not be a cure.

You think Alex is cured??!!

If you really have some method by which severely autistic people could talk, not bite themselves, live independently, etc. I think you are being very selfish by not sharing with the rest of the world.

You think I have spent the last 14 years online NOT sharing what I know and have done? You call those 60-odd videos "not sharing"? What do you know of what I've done in real life on PEI?

In fact you could probably become a multimillionaire or billionaire if you opened up shop and what you did does not require a medical license. If you really have these tools, then no one would need autism speaks to fund research they are funding, I would agree. I suspect there are many thousands upon thousands of people who would want to know what your secret is including your old time nemesis Harold Doherty

So you're calling me a liar? Alex doesn't talk? Still SIBs?

I think this conversation is over. Say what you will, you will anyway, don't let truth and/or reality get in your way.