Thursday, May 6, 2010

Defining Terms

Agreement upon the meaning of words can be very useful when engaging in discussion with others. There are dictionaries for this, but sometimes people prefer to make up their own meanings. Other times, since language is always evolving, and since connotations vary depending upon group history and by region, there can be legitimate disagreement over the meanings of words. Some words seem especially vulnerable to being twisted or purposely corrupted.

Please choose any question or questions from this quiz for discussion in the comments section. I may very well choose to post your response and offer my own thoughts on the topic.

1. A and B are members of a self-advocacy community who disagree on several points. A posts a photo of a pig rolling in mud and caption’s it with B’s name. This is an example of:

a) free speech
b) bullying
c) It depends on the context

2. D leaves a comment on C’s blog saying that A is a liar. C elects not to post the comment. This is an example of:

a) censorship
b) freedom of association
c) discretion
d) insistence on verification of possibly damaging information

3. D now posts a comment to Z’s blog stating that B is psychotic and should be killed if she does not stop talking. Z allows the comment to stand. Z is guilty of:

a) nothing at all
b) aiding and abetting a death threat
c) supporting harassment
d) bullying
e) It depends on what country this happened in

4. E posts graphic comments about F’s body. When asked to retract the comment, E refuses. This could be considered:

a) all in good fun
b) a valid expression of male sexuality
c) sexual harassment
d) perfectly acceptable

5. L wants fellow blogger M to link to his blog. M refuses because he does not wish to be associated with some of the posts L has written. M is probably:

a) a spineless coward
b) censoring L
c) exercising free will
d) entitled to associate with whomever he wishes

6. A group of advocates writes a letter strongly disavowing the opinion of another individual who has suggested that anyone claiming to be autistic should be required to provide evidence of diagnosis. The group is practicing:

a) advocacy
b) bullying
c) free speech

7. Several members of a self-advocacy community have objected to a series of false accusations about one advocate and unwanted sexual comments directed toward another. Most of those who have denounced this behavior have been women. This is probably because:

a) they are all lesbians
b) they are delicate flowers, crybabies, can’t take the heat
c) they hate men
d) they are not really autistic
e) some men have not chosen to speak up against the bully

8. Which statement(s) represent(s) the values and ideals of neurodiversity:

a) People with Asperger syndrome are valuable to society and should not be thought of in the same way as those with “classic” autism.
b) Autistic people are not mentally ill, so they should not be subjected to institutionalization.
c) There are more autistic men than autistic women; therefore if an autistic advocacy group has more female than male members, men are being intentionally excluded and discriminated against.
d) People require different types and levels of support, but all are of equal value to society, regardless of diagnosis, and all are deserving of ethical treatment and human rights.
e) Presenting a united front is important to the cause; all autistic people should come to an agreement on what is best for autistics.

33 comments:

  1. Great post!

    I'll play, and start with 1:

    1. A and B are members of a self-advocacy community who disagree on several points. A posts a photo of a pig rolling in mud and caption’s it with B’s name. This is an example of:

    a) free speech
    b) bullying
    c) It depends on the context


    It's B; and exemplifies childish, immature behavior, which is worthy of nothing but scathing contempt, preferably dished out with a dry, searing wit, if possible.

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  2. 1. This is definitely a) free speech, even if I did not personally define "free speech" as broadly as I do. It is possibly b) bullying, but I know neither A nor B, and nothing about their relationship with each other, so c) it depends on the context.

    2. Free speech does not apply in all contexts. C's blog is one of these. Therefore this is not a) censorship. I don't think b) freedom of association applies, because, well, we don't necessarily have the freedom to AVOID association -- all we can do is ignore it, etc. It could be c) discretion or d) insistence on verification of possibly damaging information, but either way it amounts to freedom of speech. C has every right to limit D's expression in a private context under C's control. For any or no reason.

    3. Now, I am not a lawyer. I would imagine that the correct answer is e) it depends on what country this happened in. But in my opinion, unless Z made an active effort to support D's comments (and I don't believe approving a comment should count in that regard -- it's merely presenting fact), Z is guilty of nothing.

    4. As I mentioned, I define "free speech" broadly. Since F is offended, the situation is clearly not a) all in good fun, and may in some contexts be c) sexual harassment. But I also believe that any expression of sexuality is valid in SOME way, and that in almost any context, while I might not find it perfectly acceptable, I probably would not argue for the retractment of E's words.

    5. M is free to link to or to refuse to link to anything on the web. This is not true censorship, since L is not being denied free speech. M is exercising her own free speech, and is entitled to associate with or to deny association with or to avoid association with or.... yadda yadda. This may or may not make M a spineless coward -- I do not know enough about the situation to make a judgement.

    6. If they're a "group of advocates", surely they are (at least in their opinion) practicing a) advocacy. Whether or not they are b) bullying is a subjective matter (I can't make a personal decision one way or another here without more information). Certainly they are exercising their right to c) free speech in any case.

    7. I'd go with f) In my experience, men are more often likely (not always) to stand up for themselves, so women may be more familiar with standing up for others who cannot or do not stand up for themselves? Again, I don't know the whole story.

    8. Everyone deserves to receive the support they require. Ev. Er. Y. One. Male, female, autistic, NT, whatever. Some plants grow in the desert, some plants grow in the jungle... Every human should get the chance, to the best of society's ability, to occupy a place in society in which they will thrive. And I do believe that there is a place for everybody! We are NOT all of equal value to every INDIVIDUAL in society, and should not expect to be, and situations such as c) where a disproportionately large number of women may exist artificiality (yes, by being exclusionary, actively OR passively) may cause a "local" imbalance, I believe that society as a whole will tend to find equilibrium.

    I feel like I started out speaking English here. I'm not sure where I ended up. Either way, interesting questions to ponder on :)

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  3. I'd say #1 depends on the context, but #6 is definitely not bullying.

    #1 depends on the context because it depends on the relationship between those two bloggers. It's one thing if it's along the lines of a Friars Club roast, where the two bloggers are otherwise friendly and there's a shared understanding that it's meant to be harmless. It is bullying, however, if there's not that shared friendship/understanding.

    (It's not a very good joke either way, in my opinion, but whether it's bullying depends on that relationship.)

    #6, however, is not bullying; I'd say this is free speech. There are no blanket insults; every point of disagreement is supported by fact. It's disputing one specific aspect of a person's opinions, not attacking the person as a whole. In fact, the writers may completely agree with the person on every other thing; the letter is strictly about this one point of contention.

    #2 is definitely C and D, but not censorship. It's a privately owned blog; just like a newspaper, a blogger can choose to publish what they want, and the commenter can still easily comment elsewhere. I'm still not sure about "freedom of association"; I'll have to think about that one more.

    #3 definitely depends on the country. Some countries are much more strict about this sort of thing than others.

    #4: Sexual harassment, plain and simple. Sexually explicit comments aimed at a particular individual, and that individual or someone connected has taken offense... it's pretty much a stock case.

    #5 is C and D. You aren't forced to link to anyone who asks you to link to them. That's pretty much common sense, I'd think.

    #7 is E, simply by virtue of the fact that none of the other answers fit.

    #8: Mostly D. Definitely not A or C. Not E either; there should be some room for disagreement, as long as the core principle is agreed on. And though B is related, I wouldn't say the way it's phrased is a description of neurodiversity; I'd say it was more "nobody with any mental illness should be forced into an institution."

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  4. I don't think the questions are particularly valid as they can be construed in any number of ways contextually.

    It as bit like asking which of the following is correct

    1. Snow is to Coal as White is to Black.
    2. Night always follows day.

    The inherent problem with multiple choice questions is that they are leading, the do not allow anything beyond the standardised set of answers provided all of which may be wrong (or right) in some context.

    A man is running and a policeman is running closely behind, which is the correct answer.

    1. The man is a thief and the policeman is chasing him
    2. The man has dropped his wallet and the policeman is chasing him to return it.

    Wrong in both cases if you draw back the focus and realise they are both running in a race.

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  5. The author is correct, of course. Some of these questions have more than one possible correct answer (they have more than one dictionary definition as well). Some may be matters of opinion or context dependent. The questions are really meant as starting points for discussion, and are based on comments I've seen around lately. For each speaker/writer, defining the terms (s)he is using is a good idea and can help to elucidate the true nature of any disagreements.

    More later...

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  6. I was going to post a lenghty response, alas the comments don't allow anything that long, be prepared to see it on my blog instead.

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  7. 1. A and B are members of a self-advocacy community who disagree on several points. A posts a photo of a pig rolling in mud and caption’s it with B’s name. This is an example of:

    Bad taste, if it's a one-time loss of civility by A; if A repeatedly behaves badly toward B, it moves into bullying.


    2. D leaves a comment on C’s blog saying that A is a liar. D elects not to post the comment. This is an example of:

    c) discretion

    It's D's blog, and she or he is free to moderate comments as she or he sees fit.

    See Teresa Nielsen Hayden's essay on moderation, “Spammers, Trolls and Stalkers: The Pandora’s Box of Community” and Moderation isn't rocket science. Be sure to read the comments.

    3. D now posts a comment to Z’s blog stating that B is psychotic and should be killed if she does not stop talking. Z allows the comment to stand. Z is guilty of:

    b) aiding and abetting a death threat
    c) supporting harassment

    Also see the sections on responsibiiity in the essays linked to above.

    4. E posts graphic comments about F’s body. When asked to retract the comment, E refuses. This could be considered:


    c) sexual harassment

    Also incivility.

    5. L wants fellow blogger M to link to his blog. M refuses because he does not wish to be associated with some of the posts L has written. M is probably:

    c) exercising free will
    d) entitled to associate with whomever he wishes

    It is in no sense "censoring" L -- L has his (her) own blog, after all.

    6. A group of advocates writes a letter strongly disavowing the opinion of another individual who has suggested that anyone claiming to be autistic should be required to provide evidence of diagnosis. The group is practicing:

    c) free speech

    I don't think it is advocacy because...well, I don't.

    7. Several members of a self-advocacy community have objected to a series of false accusations about one advocate and unwanted sexual comments directed toward another. Most of those who have denounced this behavior have been women. This is probably because:

    e) some men have not chosen to speak up against the bully

    This has nothing to do with autism, really. It has happened over and over again in non-autistic forums and blogs.

    See the whole Kathy Sierra episode of 2007 discussed at Moderation isn't rocket science, and more at 8 first steps to fight cyberbullying and Mysogyny on the Web, 2009. I think Dorothea Salo's essay What Some Folks Can Do If They Choose is still strong.

    8. Which statement(s) represent(s) the values and ideals of neurodiversity:

    d) People require different types and levels of support, but all are of equal value to society, regardless of diagnosis, and all are deserving of ethical treatment and human rights.

    I do not have autism, nor do I have a family member with autism. I came independently to the concept of neurodiversity, originally through Mel Levine's All Kinds of Minds and the concept of dignity for all.

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  8. Somewhat or even pointedly related:

    Bev, I was poking around the internet and came across this discussion -- on blogging science. It's the outgrowth of a panel at Unruly Democracy: Science Blogs and the Public Sphere"

    It's a blog post by Jessica Palmer,

    Online Civility: Between 10,000 cliques and 2 cultures, where's the neutral ground?

    Here's the apropos paragraphs:

    In the blogosphere, a post relating your interest in/perspective on/attention to an issue is not read so much as run through a very coarse filter, and used to lump you in a political or ideological group. Generally, readers find it easier to believe that, if you disagree with them, it's for ideological and irrational reasons (the alternative, of course, is that you may actually have a point, and they may be wrong). Never mind that the previous week you came to a different conclusion, or offered the exact opposite perspective, in a different post: you've been labeled a partisan apologist for one group or another. To such people, the blogosphere is a hyperpartisan, polarized realm of friends and enemies, and a blogger who tries to skate down the middle - to be friendly to spiritualists and atheists, to Democrats and Republicans, to the sciences and the humanities - can't succeed in achieving an air of neutrality. She's simply going to be labeled an enemy by both sides, depending on the day of the week.

    The thing that makes me angriest about all of this is not random emails from wackaloons, or people calling me a stupid bitch. It's that, when a comments thread becomes a series of hateful ad hominem attacks, its utility as a platform for meaningful conversation is gone. And that not only makes blogging seem pretty pointless, it also depresses me about American society as a whole. Being a "devil's advocate" (putting an unpopular argument out there so thinking people can turn it over, take it apart, and see if it has any merit) under such hostile conditions is a risky strategy. You'd be a fool to say anything even slightly provocative, knowing that people will just misread what you say and label you for it, unless your goal is to generate conflict-based traffic and long, angry comment threads. Being as incendiary as possible is an excellent strategy for spiking your traffic, mobilizing the masses (on both sides), fundraising, or monetizing a blog. It's a great way to do advocacy or even (as Chris Mooney mentioned in his talk yesterday) to shame egregious purveyors of bad science into correcting their inaccurate stories. But if you're just trying to have a conversation, you may be better served by keeping your readership as small, as niche, as possible, so it's the kind of environment where people will actually want to hazard an unpopular position or two without fear of hostile attack.

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  9. 1. It is (a), because the government isn't censoring it. It may be (b), but I don't understand the significance of the visual.

    2. (a) & (b), as well as(c) or (d), depending on the blog owner's intent. But censorship between private individuals is not non-free speech.

    3. Socially (b) & (c) are true. (d) may be accurate depending on context. (e) will determine possible legal consequences.

    4. 100% (c) without equivocation

    5. (c) & (d)

    6. (a) & (c)

    7. (e)

    8. (d)

    "Free speech" is a right granted by the government. It is not a right to say whatever you want wherever you want. The government simply cannot impose laws controlling or limiting speech. Private individuals and organizations can legally and ethically control (to at least some degree) the speech of their members when acting as members, and disassociate themselves from the speech exercised by others.

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  10. As if I could answer just one... I have OCD tendencies.

    1. Mud Pig Picture
    b) bullying: Nothing more to say.

    2. Liar Comment
    a) censorship
    I make a point to accept comments on my blog even if they go against my beliefs provided that they aren't very obvious harassment, trolling or spam. Of course, it's my blog, so I can always respond if I want to. Covering things up is censorship.

    3. Statement that B is psychotic ...
    c) supporting harassment
    Provided that the comment has been noticed by the blog owner, a failure to act on a death/harm threat indicates support of harassment.

    4. Graphic comments about F’s body.
    c) sexual harassment
    That one's a no-brainer too.

    5. L wants fellow blogger M to link to his blog...
    c) exercising free will
    It's one thing for someone to add a link in via comment. It's a totally different thing for the owner of the blog to be required to write something which they don't necessarily believe in.

    6. A group of advocates writes a letter strongly...
    c) free speech
    I didn't see this so much as a freedom of speech thing although that's the closest answer. It sounds more like they're trying to protect themselves legally - and possibly distance themselves from something they don't agree with.

    7. Several members of a self-advocacy community have objected...
    I didn't feel that any of your options covered the problem adequately. For me, it just sounds like a matter of honesty. After all, you did make it clear that it was a false accusation.

    8. Which statement(s) represent(s) the values and ideals of neurodiversity:
    This was an interesting one...

    b) Autistic people are not mentally ill...

    That's my firm belief. Different, NOT Damaged. If we perform less efficiently in neurotypical society than the usual inhabitants then it's because we're having to conform to a different set of rules. Neurotypical rules.

    d) People require different types and levels of support, but all are of equal value to society, regardless of diagnosis, and all are deserving of ethical treatment and human rights.

    This was a less fitting answer because although everyone should have the same basic rights, I'm not sure if everyone is of the same value to society. I'm not saying that people have lower value because of their condition but rather that their actions can lower their value. For example; I'd argue that Mahatma Gandhi had a greater value to society than say, Heinrich Himmler.

    e) Presenting a united front is important to the cause; all autistic people should come to an agreement on what is best for autistic.

    This statement was even less convincing.

    On the one hand, it would be nice to present a united front in the quest for improved services but having a united front will squash the "individual". Different individuals require different types and levels of support. What works for one individual may not be the "best" for another.

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  11. I think Liz ditz has added the most to this conversation. There is indeed a whole social psychology of blogging to be understood.

    I have been in organisations for too long and have seen organisations with different kinds of foci and different kinds of membership all fall out, become cliquey, and split in much the same way.

    Sometimes people who belong to a particular category tend to over ascribe what goes on amongst that category as somehow dependent upon the traits of that category, but this is just narrow focus.

    What happens in the world of autism can easily be over ascribed to autism, when it's something that is universal.

    It's the communicative nature of the blogosphere perhaps that leads to particular kinds of reaction because for the most part all the interlocutors see of each other is blog posts and not what they are like, what they do, and what they believe in the wider off line world.

    They jump to conclusions based on what are essentially extracts from the whole book.

    Same can happen in organisations when people only ever see each other in the context of meetings. I remember the revelation when I first saw a guy who I always saw as a "suit" an "official stuffed shirt" outside of a meeting at another event wearing mufti.

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  12. Question 8, answer B really bothers me because it implies that it is okay to subject the mentally ill to institutionalization. I notice codeman38 touched on this.

    No one with a disability should be institutionalized (or at the very least, institutionalized against their will. I know some people enter institutions of their free will for an amount of time that they deem appropriate and no more, and I am not about to suggest that they should not have that option.) While autism is definitely not a mental illness, I think you can say it shares some characteristics -- it's invisible physically though behaviors can "out" you, it has to do with the brain, there's a rather sordid history of treatment, and there's a huge stigma.

    There's also a huge issue of intersectionality, too. Many autistics also have mental illness, and sometimes autism and mental illness can work together to make a particular episode of your MI more difficult to deal with.

    8 is definitely a discussion-jumping-off-point for me I guess :)

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  13. 1. C - is this a published photo? What is the relationship between A and B, are they friendly?

    2. C - it's his right to choose not to allow the comment.

    3. E - I'm not sure of the laws, but my gut says that Z isn't guilty and does not have an obligation to remove the comment until someone complains about it.

    4. C - if someone is upset, it's harassment.

    5. C and D - co-erosion into such a group is illegal.

    6. Either A or C - depending on the way the objection is raised.

    7. E - but I don't really like this question.

    8. B - I also agree with D, but I think B is better suited to neurodiversity.

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  14. 1. I don't really know, looks more silly than bad, but all depends of how B feel about that so B or C

    2. I think it can be C or D

    3. legally I don't know maybe e)... but morally (or ethicaly if you prefer) I would say b) c) and d)

    4. c) clearly!

    5. c) and d) of course

    6.I'd say c) and maybe a)... I don't really know!

    7.e)... sorry I have not already wrote something about that... but I don't know if many people read my blog... o.k. I'll try to write something, but I'm not sure I will have something to say that has not been said yet!
    except expressing my support to K and S (apparently you didn't named them here, so I don't know if I should!)

    8. d) of course, and for b) I agree with Codeman38 and Icca!

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  15. Icca,

    I agree that that question was problematic. It implied (without saying directly) that there is a type of person that belongs in an institution. I don't believe anyone belongs in an institution, whether they choose to live in one or whether they are forced to do so for lack of other options--it doesn't mean they belong there.

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  16. Interesting responses. To me, number 1 was the most ambiguous. I agree with the majority of posters that this (calling someone a pig) is very poor form, but not necessarily something I would call bullying. My answer is (c)depends on the context, for some of the reasons mentioned here, especially since we don't know anything about the relationship of the two parties. I think it is important to reserve strong words, such as "bullying" for clear cut offenses. By the way, this was a poorly constructed question.

    Another question about the nature of bullying, number 6, was included here because I saw it posted elsewhere as an example of bullying. It is not by any stretch of the imagination. The person posting this bases his argument on the use of multiple signatures (ganging up on someone?)and the fact that the person insisting on documentation of diagnoses was named (Thomas McKean). These arguments don't hold water. A petition is very appropriate when a well known individual has attempted to silence others and has demanded that personal information be made public.

    For the sexual harassment questions, 4 and 7, most commenters here are in general agreement. I have not received any comments to the contrary that I've not published. I have rejected comments from individuals for other reasons. Since I wrote this, I've seen that several males in the community have chosen to speak out against sexual harassment. I need to stop visiting those places where the comments about hysterical, overreacting feminists are being made.

    I'll weigh in on the censorship and neurodiversity questions in a separate comment.

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  17. Liz Ditz,
    Thank you for the great resources. I had not seen Moderation isn't rocket science before. Good stuff...

    A small sample:

    "Anonymous nastiness is easy to write, and will always find an appreciative audience. I don’t care. It’s not a manifestation of the free and open discourse of the internet; it’s a thing that destroys that discourse. To be specific, it’s the same old trashmouthed bullying we all know from junior high and high school. Putting it on the net doesn’t cause it to develop any novel complexities or interesting emergent behaviors. It’s just the same old sh*t."

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  18. As several of you have pointed out, there are problems with question 8. I wanted to see what people really thought about this. Neurodiversity is a much abused word, and some of the ways it has been abused by people claiming to support it has seriously damaged the reputation of this important concept. As far as I am concerned, the only correct response here is D.

    For those of you who endorsed B, I would ask you to reconsider. Autism is not classified as a mental illness, but is a neurological difference. On this, most of us seem to be in agreement. The primary problem here is the dependent clause. To support that people who are viewed as having mental illnesses belong in institutions is not consistent with neurodiversity. Neurodiversity is about much more than autism, it has to do with the value and basic human rights of all people. I can't go along with anyone who would say "people like us deserve better, but I'm not so sure about them.

    The second problem with 8B is that some autistics have what are termed mental illnesses--most commonly major depression and anxiety disorders--just as some neurotypicals do. One thing really has not much to do with the other.

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  19. On censorship: X is an advocate for the rights of autistics and others. Y has accused X of a variety of offenses and repeatedly attempted to discredit X. Y has stalked and threatened X. Z is someone who has supported Y is these efforts, and otherwise attempted to discredit X. Z(1) and Z(2) have left comments responding to this post. I have elected not to publish them because I respect X, value the insights provided by X, and do not want to make this blog inaccessible to X.

    I am pretty sure I will be accused of censorship because of this. Z(1), by the way, provided a set of responses nearly identical to my own, but elected not to answer question 8. Z(2)provided an argument of some merit (though I disagree with the argument overall) to my own remarks on question 6. Neither comment contained anything offensive or anything I would consider bullying or harassment. The only reasons I did not allow Z's comments have to do with their past behaviors and continued support elsewhere of Y's harassment of X.

    I do not see myself as suppressing the speech of Z(1) or Z(2). Z continues to express Z's points of view elsewhere in whatever terms Z chooses. I would have been willing to include the text of Z's comments if they had been submitted anonymously. Maybe this makes my a hypocrite. I don't know. At this time, it is how I have chosen to deal with a difficult and disturbing situation. If I find a better way, I will reconsider my policy.

    I do not think that Z(1) and Z(2) are bad people. I have no opinions on what sorts of people they are, but I do have opinions about the behaviors I have referenced here.

    I maintain that my actions are not censorship, but an example of exercising free will and discretion. There are plenty of places where anyone can read the views of Z, and both have things to say that are of value on issues not related to X.

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  20. Thank you for posting this, Bev, and thank you, Liz, for the comments and references you gave.

    Watching all this unfold over the last number of days I am struck at how easy it is for Gresham's Law to operate, for a very small number of people intent on perverting shared values to wreak havoc.

    I hope that the rest of us will not allow ourselves to be silenced by this.

    To that end, I'll paraphrase Voltaire: tend thine own blogrolls. They will have to take the place of the Hub, at least for the time being.

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  21. Bev: It wasn't a petition, it just allowed for people to sign if they agreed with it. (Although due to organizational problems, most of the people who signed are not listed.) The main problem is that one of us (not me) had a falling out with him ten years ago. And on the fairly rare occasions that we have expressed any problem with an action he's taken, he decides that we must all have it in for him and be constantly on the lookout for ways to fight whatever he does. When the reality is that we just happen to disagree on a fair amount of things, so when those things come up and we have a conflicting opinion he takes it personally no matter how many times we say it's not personal. He's even taken several compliments as insults and added them to the list of things we've supposedly done to him. (And even then those things are numbered incredibly few -- the letter in question, a not-fully-positive but not-fully-negative book review, and a couple arguments on mailing lists and the like. Over ten years, that's less negative things than have happened between many friends, and hardly constitutes the kind of relentless attack he imagines. The reality is I never think of him unless his name or actions come up, which I've told him but he doesn't believe me.)

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  22. "he decides that we must all have it in for him and be constantly on the lookout for ways to fight whatever he does."

    Gee, I wonder how he got that idea? A public petition, signed by hundreds of people, naming him? Gee, where could he possibly get the idea that these people don't like him?

    The fact is that Thomas McKean was around and advocating long before his antagonists were and they never addressed the reasons behind his concerns with diagnosis because they can't. They can't really because there is only one answer and its not the one that fits with dogma. Thomas got the Autism Society of America to drop the JRC from its vendors. He has testified in front of congress. He has done a lot of good but do you think he's welcome now? Nope. Someday we will all fall out of favor.

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  23. "Someday we will all fall out of favor."

    Some of us feel like we already have.

    There is in any society a fine line which divides the private individual from the public citizen. (interestingly the Greek for private citizen was "idiotes"

    Those who expose themselves to the public gaze, in public debates however, cannot complain when others express a disagreement with them, even a collective disagreement. That's no more ganging up, than a campaign being organised to force an unpopular government minister to resign because he made some public gaffe.

    We are all in the public eye because we blog.

    Most of my colleagues on the Council of the NAS do not have the same public presence on the internet that Mike Stanton and I do, for instance. That means because our heads are above the parapet, we sometimes take flak for that. It's an availability heuristic.

    I don't ask to see Simon Baron Cohen's degree, or Lorna Wing's when they speak at conferences, why should they ask for my diagnostic papers in return if we share a platform, that is absurd. That is what people were pointing out to Thomas McKean was it not?

    You make an error in public life and people will call you out over it, and you are never allowed to forget it, no matter how far you may have moved on, or how many times you have repudiated some former act of folly. It's the grubby world of politics we are watching played out on the hub.

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  24. Dear Anonymous and Not,

    This blog isn’t about who is and isn’t who they say they are, who said what in 1997, who was mean to whom first, who believed irrational things in their teens, whose relationship with whom ended badly. You know where to find the blogs that are about that stuff, and they will publish your comments. Leave me alone. This blog is about which institution abuses autistics, which charity twists statistics, which academics spread false information, which celebrities think they know more than scientists, how many autistics have been murdered this year, how many can’t find jobs, how many are written off as incapable, broken, inferior and costly to society.

    This blog is about the misrepresentation of autism and its consequences. This is not about gossip. This is a place for thoughtful discussion. People who disagree with me are welcome to explain why, within reason. By “within reason,” I mean that no one is welcome to call anyone else a fraud, use this space to defame or threaten another advocate or push their own agenda through repetition of the same unfounded opinion. There are free blogging platforms available where you are able to post your thoughts without the consent of anyone. There are plenty of places that welcome controversy for its own sake, and some of them are read by more people than this blog. You know where to find them.

    I don’t need to prove anything to you. There are other places where you can tell the world that I am a hypocrite; your opinion carries the weight of your documentation of fact and your own reputation. When you start your comment with “You will publish this if you care about autistic people,” you sound like a chain letter. You sound like a bully. You already know why I am not allowing these comments. It is up to each individual to decide what his or her blog is about. This is why I moderate comments, practicing what you believe is censorship rather than let this blog become one more place where autistic people can be terrorized for the crime of telling their own atypical stories.

    This time you have succeeded in cajoling me into wasting ten minutes of my time to write this. Consider this a “win” if you like. Yes, as I have said before, I do tend to repeat myself. But really, this is becoming very tiresome.

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  25. Anonymous,

    Regarding your (unpublished comment):

    You asked if I think it is okay for a particular organizatin to have demanded that a particular person share personal medical docuements in order to attend a conference. The answer is no. I do not believe that is okay, and it does not depend on which organization or individual was involved. I am addressing this question because I think it is a legitimate one, not because I have seen any evidence to support that this happened in the case you mentioned.

    I believe that if there is evidence that a person has threatened another person with harm, this is sufficient reason to block the offender from attending an event that has been marketed as a safe space or retreat, or which is sponsored by a private institution or group. In some cases it might also be good cause to block the person from events not meeting these criteria as well. This has nothing to do with whether anyone is autistic or not and everything to do with whether someone has threatened or abused someone else.

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  26. I was one of the people who wrote the open letter and if I say it's not a petition then it's not a petition. It's closer to a pledge -- "We will not take part in this form of discrimination."

    If you write a letter to a huge number of autism organizations trying to encourage them to force autistic speakers to prove that they are autistic, then it is totally reasonable for people to respond to this. We would have responded the exact same way were the person's name Thomas McKean, Bev Harp, Larry Arnold, and regardless of whether we liked that person. Thomas has never understood that distinction, and doesn't care that I have had equally strong reactions to the actions of people I otherwise like.

    He doesn't care that one of the people who wrote the letter has always had a favorable attitude to him and in fact identified rather strongly with him. To him, if you disapprove of something he has done, it's the same as disapproving of him. If I had that attitude I would have no friends left in the world because we all strongly disapprove of some things the others have done. Hell, I disapprove even more strongly of things I myself have done than anything he has done. And as I said he has even taken compliments from me and distorted them into criticisms because he is that convinced that I've got some kind of vendetta going on because I have:

    1. Written a book review that was part positive (he took that part for negative) and part negative. Even though I have written equally negative or more so book reviews of people I like on a personal level, such as Donna Williams. But I must have it in for him because I'm a friend of someone he doesn't like. Which just... gah when I decided to write reviews I swore I would not be influenced by anything except the content of the book, because to do otherwise seemed unfair. (And no I don't approve of what Donna did to him all those years ago any more than I approve of what he does to others sometimes.)

    2. Argued with him about cure a small number of times. Even though I've again had far more intense arguments with friends about that and other topics. (I'm not at all the sort of person who expects my friends to agree with me. Not even close. Which is why I find his repeated misinterpretation of my motives so incredibly inappropriate, and displaying a massive misjudgement of my character, as darn near anyone who knows me well will tell you.) I just don't think neuropathic pain (which I have too) is autism. Period.

    3. Publicly disapproved of his intent to try to get autism organizations to make people prove their autism. Which again I would have done the same if my best friend had tried to influence organizations in that way.

    cont'd

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  27. As to why on the third, I've given plenty of reasons over the years and at the time. Your failure to agree with them does not constitute my lack of reasons. But here they are again:

    1. It discriminates against those who did not get a diagnosis (and he says to doubt the diagnosis more the older the person was so it also discriminates based on age of diagnosis). Which basically can in various cases mean discriminating on an ageist, classist, sexist, racist, regionalist, and ableist basis. Because every single one of those things affects diagnosis rate.

    2. It discriminates against autistic people in particular. Because parents are not usually made to prove their child's diagnosis, nor whether they have a child, nor made to submit genetic testing or adoption papers to prove the child is theirs. Nor are academics or professionals generally forced to prove their credentials.

    3. It's an invasion of privacy. There is not even a guarantee of the confidentiality of that information. And some people who work in autism organizations are well known for their tendency to gossip about autistic people's private information.

    4. The context he wrote this in is one where the diagnostic status is being specifically tied up with the criticizing of therapies aimed at autistic people. So basically he makes it sound like only officially diagnosed people ought to have the right to critique therapies at conferences. Which is both ridiculous and elitist.

    Anyway, I have always tried to hold by a policy where if someone does something I disapprove of enough on am ethical level, it shouldn't matter who they are to me, I should speak up. I have done my best to abide by this. But actually what's hard to me isn't standing up to my friends. The sort of friends I have don't mind and even encourage me to do so and vice versa. The hardest part is standing up to people I either don't like or who think I don't like them. Because I am always aware of the potential to be taken personally. So I often hold back a little when I shouldn't.

    As for what he's done since then, I honestly don't know what it is. I don't go out of my way to check up on what he's doing. I can barely follow the lives of people I'm close to. I don't read his blog, didn't even remember he had one until he wrote me a weird email trying to relate something I wrote to something he wrote (again he seems to assume way more interest on my part than exists). I don't think about him, ever, unless someone brings him up. I have no hostility to him, if I did I would think about him more. All I have towards him is a desire not to get entangled in the complicated social politics that ensue whenever I find myself having to publicly disagree with something he's doing. Which is incredibly rare.

    If I really had it in for him, I think I would publicly mention him in a negative way more than twice in ten years. I have had more public disagreements with friends. I have also recommended his book publicly on several occasions but that apparently doesn't matter because if I didn't like parts of it then obviously I must see nothing of value in it, right? I've actually made more public mentions of him that are positive or neutral than negative. Not at all what one would expect from someone who has it in for someone. But in the end he'll believe whatever he wants to, which when it comes to me, has little to do with reality. Reality is I'm indifferent to most of what he does, annoyed by some, and appreciative of others.

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  28. Amanda,

    Thank you for the clarification regarding the open letter (not petition). I meant to say that before allowing the anonymous (10:31 AM)comment through, but forgot. I was responsible for the initial misstatement on that. I assume that the rest of your last comment was directed at the anonymous commenter.

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  29. Thanks everybody for the appreciation.

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  30. I don't have the spoons to tab back and forth to reply and answer the quiz, but I did want to express my thanks and support for this fabulous post. You're one of my favourite bloggers to read, Bev, it's been a delight to see so many posts (though horrible about the impetus).

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  31. My impressions on the matter:

    1c 2d 3b 4c 5d 6c 7e 8d

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  32. 1. probably b), unless it was a mutually enjoyed joke.

    2. probably a), unless this person has been refuted many times and persists in saying this.

    3. c), but it's probably better to reply to the comment instead of deleting it.

    4. definitely c), such comments are only acceptable if the person they're about says they are.

    5. c) and d)

    6. a) and c), unless they used ad hominem attacks.

    7. e)

    8. d)

    ReplyDelete

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