07
Oct
11

The International Autism “Blacklist”

10/03/2011 (I was without internet for three days and wrote this during that time)

I said I wasn’t going to write about Zoey Roberts again and I had every intention of not doing so. Something so heinous occurred that I must speak out, however. There was created a page, called The International Autism “Blacklist” on Facebook. This page, according to its latest description as of this writing (and may change prior to publication as I wait for internet connectivity again after moving into my new apartment), is so that new “autists to the community” can just use that list of people to know who to block and report on FB. They don’t have to think for themselves, just follow that list of names blindly. The page uses status updates to list each name, individually, and their alleged crimes. No links to where these quotes that are used exist on the page, so one cannot verify if that individual even made the comment ascribed to them. Some have said “Yes, that’s what I said to you after you did XYZ” while commenting on the statuses with their names. Others have said “That was taken out of context” and so on. Some outright deny the verbiage quoted. The most appalling part? A boy with autism saw the page (perhaps from seeing it in his FB newsfeed because his mother commented on the page in defense of herself) and commented on the same status, in defense of his mother. He was clearly a child based on his profile. All one had to do was look. However, because he defended his mother, he was named on this so-called blacklist. That child, at the time of this writing, was scheduled for surgery this morning. I hope all went well and that he will have a speedy recovery. Instead of preparing for the upcoming surgery and getting done all those little and big to-do things, the mother was targeted and had to defend herself and her son.

She had politely privately messaged someone she thought to be involved with this list. She did not outright accuse him, but she asked that if he knew who was controlling the page, if he could please remove HER SON’S name and that he’s a minor. The person replied with vulgarities I will not repeat. While a screen shot of this private message exists and was shared by the mother, I will not be posting it. One can find it in the WrongPlanet.net Facebook group (it’s a public group and you do not need to be a member to see the “wall” there). It took days before the child’s name was finally removed, either Sunday night or Monday morning. To say that those who were “blacklisted” were outraged is an understatement.

It’s strange how varied the persons are. Some represent parents whose children have autism. Some of those parents desire cures for their children’s medical (co-morbid) issues. Some of those parents desire cures for their children’s autism, period. Some are parents and proud members of the neurodiversity group who do not desire a cure, or in some cases, treatments as they are known traditionally. Some of those listed believe autism is genetic. Some believe autism is caused by vaccinations. Some say they don’t know and don’t care what caused their child’s autism. Some of the individuals listed are autistic themselves. And yet, as varied as their stances are, they all are accused of being “against autistics” and that they “bully autistics,” deserving of banning from Facebook, blocked and reported.

Some of the names on this list are unknown to me. Some of them are very well known. Some of them, I really just do not like personally and have had run-ins with them. And while in one case, I believe the person bullied me, I do not believe it was because of my autism. It had nothing to do with that (in fact, I don’t think the woman even believes me when I say I have autism). We all, as I was named there as well, stand also accused of being a part of some “cybermob” controlled by one woman, Lin Wessels, who is a parent of an autistic child and is very vocal about wanting a cure for her child. At the time I saw that my name was listed and that I was a member of her mob, I wrote that I did not even think Lin W. liked me, never mind controlled me in her “mob.” She since commented that she values what I have to say, at the least. I do appreciate her kind words. But she and I, along with others, have had our share of some heated debates! To think that we all belong to HER cybermob is somewhat amusing to me. If the person had only stopped there, I think I might not have been as outraged as I was when I saw that child’s name go up. Although, I might certainly have since they (creators of the page) also plan to disseminate this page to unsuspecting autistic community members which is outrageous enough.

David Wilde, an autistic blogger who blogs about autism and related issues, has said that one must ignore bullies, even in light of the International Autism “Blacklist” page on Facebook. He feels that if we even mention the mere name of this page, we are giving power to the bullies and giving them what they want: attention. I agree about 99% of the time with this approach to bullies.

I wrote in Wrongplanet.net’s forum group on Facebook on Sunday. The following is what I wrote about whether or not one should speak out against this page in response to a post asking why certain, more well-known, autism advocates had not spoken publically about this page, denouncing it.

“… I have gathered that this is the issue at hand: whether to report what we find offensive quietly and move on so as not to encourage the poor behavior OR to become more vocal about this page, in this specific case.

Normally, 99% of the time, I advocate ignoring the ignorance. Like a child in a store that whines and throws a fit over a desired toy, if a parent ignores the behavior, and holds firm to their stance, the child will learn that that behavior isn’t going to work. Sometimes in the case of bullies or harassers, that works with them too. Sure, they may move on to other targets but sometimes they’re like the child who learns that that behavior is NEVER a good thing and stops it all together. But either way, the lesson in the moment is learned: I cannot be bullied into doing what you want. Sure, they may kick up a bit more in the hopes of wearing you down, just like that child in the store, but eventually the message is received.

However, there is that 1% of the time where being silent won’t work. You have to become more vocal and state the obvious: this is not tolerable behavior and will not be accepted. It has to be pointed out that way sometimes.

I strongly feel in the case of this International Blacklist, this is the time for more vocal outrage and stance taking by the advocates in this community. Why?

Because this “blacklist” is being disseminated to “new autists joining the community” according to the latest description, and this is so they don’t have to use their critical thinking skills and decide for themselves, based on their own observations and interactions with the persons listed, to decide whether or not to ban/block them on their FB account or elsewhere. [edit: that was the stated purpose of the list, so that others did not have to “worry about” these things and didn’t have to think for themselves about it; I didn’t say that, they did.]

I would like to think that every person, autistic or not, have these critical thinking skills; sadly, I’ve seen for myself that not everyone does. It is for THOSE individuals who would come across this list and blindly follow it that I feel more information should be given on this issue to let those folks know that this “blacklist” is not what it appears to be and they should follow their own path of thoughts to decide who to block or not.

And it needs to be said somewhere else besides FB too. Whether or not [it should be] those advocates listed in the original post that started this question is up for debate. Perhaps they don’t know about this list yet and that’s why they have not spoken up? Some of these advocates (not specifically of those listed there) that are more popular do not actually pay attention to their FB accounts–they use it for marketing purposes only for their books, or websites, or organizations, etc. So, it is possible that they have not spoken up or out either for or against the list because they do not know of its existence.

So, in short (or long!), I’m going to do MY part in whatever way I can to get the word out that this list is not to be blindly followed. That most of those listed I have seen and observed personally and know that they are not bullies of autistic people–even if I disagree with them on their opinions about what causes autism, whether or not autism itself should be cured, or what have you. None of THAT matters because all of us are on different sides of these issues and still wind up on the same list. I have noticed a pattern to those names: perceived enemies of Zoey Roberts and the friends of those perceived enemies. I found it fascinating that Emily Titon was listed, shortly after telling ZR that the list is only going to cause problems, even though ZR liked that comment and was saying on her own wall that she was not the creator of the list. I know she didn’t create it– Connor L. said he did. But I strongly suspect she’s influencing who IS put on that list. It’s just too coincidental that Connor L said (I believe in THIS Group) that HE created this list that Zoey spread around–so she’s involved–to what degree? I can only speculate. [edit: I will also note here that Emily Titon is not the type of individual to get involved in drama of any sort, nor does she really participate in groups on Facebook, either. She may get added to a few by her friends, and she may even participate a time or two but usually leaves these groups as the types of debates often held in them are perhaps too emotional for her tastes. She argues passionately, but logically and unemotionally. That was also true of the comment she left for ZR.]

I hope [Zoey] learns her lesson here as she’s quickly losing friends through her paranoia. I strongly suspect she needs professional help beyond what any of us can give her and I wish her the best in achieving good mental and physical health and stops this destructive cycle she’s in. It does nothing for the autism community, online or offline and leaves a bad taste in someone’s mouth and we already have enough of a stigma attached to autism that we don’t need any more.

those are my thoughts on the subject. :)”

Someone said I might be insulting when I insinuate that there are autistic people who cannot think for themselves. I did not intend to offend with that comment, but was speaking honestly. I was thinking about my own youngest son who will one day grow up and become more active on Facebook. What if that list, or that type of list, is still out there? He would blindly follow it as he does lack those critical thinking skills and sadly, he is not the only autistic individual I have seen this in. That is not a judgment on those autistics, but on those who would take advantage of that situation to misguide, misinform and deceive the autistic individuals.

And to show you that I’m not wrong, here is a clip I took from a wall of a similar page:

Now, this screen shot came from a second page called “The REAL Autism Community Blacklist”. I was attempting to explain to the creators of THAT page, that they are no better than the first one. They were simply listing the suspects of who created the first page. They said no one would be listed without “proof” of bullying, and be reviewed by the “committee.” Yes, I realize the irony of my statement above that coincides with my usage of screen shots as “proof” here. I’m leaving the person’s name up—not so she’s harassed—but so that it might be possible for others to verify that my proof is correct (by finding it on the second page). And, someone liked her comment. Now, granted she’s not blindly following the “bad” list—but it still shows, she is following a list blindly. She may know the creators of this second list and trust them wholeheartedly (she may even be the creator—I do not know) but it still shows that there is always someone (or two if you count the person who liked the comment) who will follow blindly. THIS is the EXACT reason I wanted the first page taken down. Not a judgment against Jenn Kaplan, who for whatever reasons has decided to follow the list, but against those who would even create such a list, regardless of who is on that list.

I implored the “committee” of this second page, aka the REAL one, to please reconsider what they were doing and take down the page themselves. The response? “Nope.” So be it.

I also implore that the first page, the one that started it all, to the ones who created this nightmare, to please remove the WHOLE PAGE. While I was happy to see a minor’s name removed, I would like to see the entire list disappear. Why? Because the purpose of the page goes against Facebook’s terms of service, it borders criminality, and lots of us may have a good civil case here. And some of us have the means with which to file one! Secondly, because the purpose of the page is actually to bully and harass individuals the creator/influencer of the page just perceives as enemies. I believe this person to be Zoey Roberts. Why?

Screen shot:

Please note that there she is, stating who is “another troublemaker” to be added to the “list.” Connor Lamphard tells her that he has had problems at the “list” with the same person (notably after this person’s name was added to the list). Zoey informs him that she “hangs out with lin wessels” and so on. That is exactly what is put up on this list about this person.  And yet, on this same thread, there she is telling someone else that “the others still want war.” No, Zoey, we didn’t. YOU took us to battle—we will win this ‘war’ you’re trying to wage against us. It certainly appears to me from the above screenshot that Zoey Roberts and Connor Lamphard are working together to monitor and maintain that blacklist page.

In nearly the same time frame, this screen post from another area of Facebook (the shot was captured later, after the above one was, so the “timestamp” does not show how close together or far apart these posts were made with any accuracy):

Now, isn’t that funny? She LIES to her followers. These are all taken from public places and can be found on Facebook easily enough, by going to Zoey Robert’s wall and looking at her “Recent Activity” and status updates. Of course, I bet when this gets published, she will see this and delete them. However, that’s okay because there have been HUNDREDS of individuals who have seen these posts now. Too late to hide. The game is up.

There are several more screenshots that could be shared but what would be the point? The point is made already. Zoey Roberts is not to be trusted at this time. She is lying to folks about her involvement with the “blacklist” of well-respected members of the autism community who are listed simply because they pissed her off. Their names appear, usually within minutes, of an “altercation” or “interaction” of some sort with Zoey Roberts where if someone does not blindly agree with her, they end up on the blacklist.

So while I think Zoey is trying to say above that someone is framing her, we can see clearly a few things by the previous screen shot: she knows who created the list, who maintains the page and she is directly informing him of who to post on there.

The other, and certainly most important, points of my blog post is to inform others of the existence of this page so that they can 1) warn others of its existence and true purpose 2) inform people of the true purpose behind this page, 3) ask others to report the page if they feel as outraged as I do about its existence and 4) I just really hate odd numbers in list form particularly.

 

And those are my words…

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14 Responses to “The International Autism “Blacklist””


  1. October 7, 2011 at 6:35 pm

    It really is sad, the games that people feel the need to play.

    If you disagree with me, you’re a bully. If I disagree with you, that’s my right. If you agree with someone who disagrees with me, then it’s a conspiracy.

    It is sad — almost pathetic — that people are so insecure that **any** disagreement becomes a ‘war’.

    Good post. Sad, but good.

    • October 8, 2011 at 4:19 am

      Thank you for the “good post” comment. And yes, it is sad. What’s worse is the effect that it has had on some autistics. I know of at least one autistic adult that was trying to OD on Thursday night because of the trauma she’s suffered about this page (and other bully-related issues). There are lawyers working on this issue now and hopefully pages will be taken down–but won’t happen soon enough in my book. Should’ve been taken down the first night it went up!

  2. October 8, 2011 at 4:42 am

    Adding to your blog that this page sent me to hospital on an OD

    Sorry I’m taking over when shouldn’t lol its just a suggestion cuz how many are going to be affected like I was

    • October 8, 2011 at 7:42 am

      I don’t mind you sharing your experience, Karen. In fact, I think I mentioned your experience in my comment to Jerry, just not by name. Please–feel free to share your story so that others know that bullying–cyber and real life have real life consequences. There are people behind the fonts!

  3. October 10, 2011 at 2:19 pm

    Great Post Heather…You could have used my screenshot defending Dylans Page…I have nothing to hide..

    • October 10, 2011 at 11:04 pm

      Thank you, Sam! However, I did not want to share HIS vileness on my blog and give HIM any more attention than he deserves either. I found their using your son’s name completely disgusting. Autism doesn’t make people act like that. Lack of morals, character and ethics make people act like that. 🙂

  4. October 10, 2011 at 4:55 pm

    Hey Heather,

    I do appreciate you and your input. As you know, we do not always agree nor do we need to, but that does not mean that I do not like you personally. It only means that we do not always have the same perspective. How can we? It doesn’t even mean that one of us is right and the other is wrong. It just means we see things differently.

    To be honest, I have always appreciated the fact that you seem to be able to keep your cool and remain level headed in your thinking process and ability to debate. Something I am not always able to do. Admittedly, I wear my heart on my sleeve and tend to lead with my heart, rather than my mind. Does that make a bad person? I certainly hope not. It makes me, me, different from you. Nothing less, nothing more.

    I have also always appreciated your honesty and integrity when we have engaged in debate. You are often the voice of reason. Something we can use more of in this unreasonable world we live in.

    Thanks for trying to bring this latest blemish on our community to light. The whole thing not only saddens me, it truly sickens me. I appreciate your attempt in shedding light on it. I truly do.

    Just wanted for you to know…..

    • October 10, 2011 at 11:07 pm

      Lin,

      If we were all to simply agree on all things with all people, my word.. what would I even have to talk about? I’d be so bored! LOL Yes, I’m aware you do get.. emotional… in debates. And I’m not perfect. I get that way at times too. I just do my best to try and step away before I let it show online is all LOL But even then I can get incensed over something someone said and I don’t always remember to do that.

      But I do appreciate your kind words! I don’t think you and I will ever see “eye-to-eye” on everything and I thank God for that because it gives us something to talk about; and no, being emotional doesn’t make you a bad person… it makes you a human. 🙂

  5. 9 shannon
    October 10, 2011 at 5:28 pm

    People act like that because they can’t control their own life and are jealous of the help u give people. Don’t stop helping people lin. Ive stopped going into the Autism groups im in on fb because of dhrama. Like we don’t have enough to worry about. Ive just been sitting back and trying to figure things out for myself. But i see now and i like your group people should be able to voice differences in opinion and not be harassed and black listed for it…

    • October 10, 2011 at 11:11 pm

      Shannon,

      I agree with your thoughts. No one has to agree with someone else, 100% of the time in order to be accepted by someone else or at least valued as simply another human being. I do have certain types of people I cannot and will not talk to (for example, child molestors) but for the most part, most people deserve that common curteousey of just letting them do their thing while you do yours and not have all this drama and strife. It’s wrong.

      Heck, one of my favorite people online I talk to in private messages in a long-term, on-going debate.. about everything. Sometimes I just play devils advocate while agreeing with her but we just like to discuss things. It keeps our minds sharp. We both face the challenges of regression that comes with autism and so we use debate and discussion for 1) entertainment and 2) to keep those brain cells active 🙂 It’s not a bad thing to debate with someone. It IS a bad thing to list them and minor children on a “blacklist” like you’re a Nazi or something.

  6. October 11, 2011 at 5:16 am

    This whole mess has once again brought me back to the blogging arena…

    I’m not at Disability and Me

  7. August 9, 2013 at 6:15 am

    I do not know whether it’s just me or if everybody else encountering issues with your site. It appears like some of the text within your content are running off the screen. Can someone else please comment and let me know if this is happening to them as well? This might be a problem with my browser because I’ve had this happen before.

    Appreciate it


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