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All opinions and views stated on this site belong solely to Corina Lynn Becker, and do not represent or reflects the views and opinions of any organizations, unless otherwise specified.

Friday, October 15, 2010

Real Communication Shutdown

On November 1, there is an Autism awareness campaign called Communitcation Shutdown, whereas people are encouraged to stay off Twitter and Facebook for the day in order to promote an awareness of the communication difficulties that Autistics face. 

A person is supposed to donate in order to get the charity app.  The app doesn't really do anything, other than post a little image on your picture to say you're participating.  Whether or not you stay off Twitter and Facebook is entirely up to you. 

And this is supposed to help simulate the communication difficulties that Autistic people face. 

I'm sorry, but no.  Just no. 

Yes, I know Temple Grandin supports this campaign, and I appreciate their creative approach to this, but I don't think that this gives the NT population a complete experience on the communication issues we face. 

Why?  Because it relies on the assumption that everyone participating uses Twitter and Facebook to communicate.  While I realize that these sites make communication easier, it is not the only way in which NTs can communicate online, and thus subvert the entire exercise of the campaign.

I was recently asked by a person on Twitter to participate, and I responded that there wasn't much of a point, since I am Autistic, and do not require to learn about difficulties that I myself face in communicating.  I pointed out to this person that Twitter and Facebook are two of the sites that actually allow Autistics to communicate and connect with others in the community, so I will not be disappearing from the Internet, as it is my lifeline.   I also remarked that this is a flawed simulation, since a non-Autistic person still have the capability to text on their phones, and speak verbally, and so would not be totally comprehending the true reality of Autistic disability.

The question now becomes, what would be a better method for Communication Shutdown that would have the most impact for those involved? 

Okay, for the NTs participating: do a total communication shutdown.  Go all the way.  Turn off your cell phones, log out of your instant messengers and email, unplug your home phone*, cover your mouth with a piece of cloth and don't say a word.  Don't text.  Don't type.  Don't write.  Don't speak.

If you can help it, turn off your Internet. 

Completely and utterly disconnect yourself from any form of typical communication.


I understand that there will be some who can't resist at least signing in and watching feeds go by.   For those, just watch. 


As for my fellow Autistics, as the NTs disconnect and fall silent, let's speak.

Let us use this day to flood every social networking site we know with our accounts, our experiences, what it feels like to Autistic. 


Every sensory pain, every communication frustration, every account of being bullied, every wondrous moment, every peaceful calm, every instant of understanding and joy. 



Let them hear our voices and take back the Autism community.


Let us speak.

Let us tell you want it's like to be us. 


And that, would be true Autism Awareness.













*except in the case of an emergency.  Don't want you to risk your life, eh.

35 comments:

  1. ::applauds::

    The first time I heard about this little campaign, I honestly thought it seemed rather counterintuitive-- Twitter and Facebook are things that have made it easier for me to stay in touch with others, and are far easier for me than communicating by voice!

    I could even have gotten behind a traditional 'day of silence'-- where people pledged to only communicate in writing, not by voice. But cutting off online access while still being able to speak? That's a poor simulation.

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  2. It sounds like the original idea was spawned by some privileged NT.

    Whatever.

    I like your idea better. If you NTs want to see what it's like to truly experience the frustration of being Autistic. Having nothing to communicate would be much better. No spoken words, no cell phones, no internet.

    Nothing.

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  3. Hello

    My name is Marianne and I am one of the people working on Communication Shutdown.

    I appreciate your comments about the fundraiser and respect your opinions. I just thought I could jump in and perhaps give you a little more information about what we are hoping to achieve.

    First of all, thank you for all of your suggestions about people taking it further and shutting down other forms of communication as well. We have also seen people supporting the shutdown offering to do this as well.

    The reason why we have chosen Facebook and Twitter this year is that they are simple ways to encourage mass participation outside the autism community. And as we are not spending any donations on advertising, we needed to find something topical as a way to get the attention of the media. These days, when Facebook goes down for a mere 5 minutes it makes the news.

    We realise that nothing can truly simulate what it is like for people with autism. We are simply trying to encourage a greater understanding from people outside the autism community. Social network users have become reliant and even addicted to platforms like Facebook and Twitter. And if they shutdown for 1 day, they will feel a sense of disconnection and they will feel a sense of frustration. And by creating a little empathy, we hope to encourage a wider understanding of the challenges people with autism face – an understanding we recognise those in the autism community already have.

    So we are in no way asking people with autism to give up their tools of communication. We hope that autistic voices will be louder on November 1 and express what it is like to face the challenges of autism every day.

    We intend to ask participants what it felt like to go without social networks for 1 day – which then gives us the opportunity to educate them further. If they think 1 day without Facebook is hard, imagine if they couldn’t talk at all or if they were completely isolated and silent everyday. A little bit of empathy can go a long way and perhaps after the first year, people will be willing to give up even more forms of communication for 1 day.

    Thank you for reading and if you choose not to participate I completely respect your decision. I just hope that you can see we are trying to make a difference and create some unity in support of this cause. As well as raise donations for underfunded autism groups who provide much-needed services in more than 40 countries.

    P.S. Although people will be silent online for a day, we are making sure their silence will be noticed as mass messages will be sent the day before and the day after.

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  4. @Marianne, thank you for the time you took to respond. I do understand that this is based on the fact that more and more people are connected and function online. (I have a mother who teaches high school, and complains daily of students who are texting all day during class).

    However, what about the people who are not addicted to social networking sites, who won't greatly benefit from the experience?

    Unplugging isn't necessarily going to create the feelings that you are expecting for these individuals. And this isn't necessarily going to promote communication between autistic people and non-autistic people, which is what I think this campaign should further. Empathy and understanding is good and all, but are fairly useless if it's not used to communicate.

    Also, I have a hunch that most of the participants are already knowledgeable and engaged in the autism community. For those who are new to autism, this may not provide a fully educational experience, as the impact depend on how much one is engaged in those social networking sites. At the same time, all participants still have the ability to communicate in other ways, and I have yet to actually see encouragement on the Communication Shutdown website for participants to go further in the experience, such as other networking sites, phones, speaking, etc.

    I also think that perhaps the people who would benefit the most from raising autism awareness would do so through more active communication, rather than a lack of communication.
    Hence, why I strongly encourage my fellow autistics to be very outspoken and share their experiences, both good and bad. To understand our difficulties, and to share with us in our joys.

    I especially emphasis the good parts, because I don't want Autism is be dominated by negative stereotypes, but also raise awareness that there are strengths and joys in being autistic, that we have worthwhile lives.

    I understand what you are attempting, but I think it could be better, and hope that these points would be considered in future autism awareness events.

    Again, thank you for taking the time to read this and responding.

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  5. I know a better way, how a about answering back my fbook question? As for not yacking. Just text mne. I get ur jokes. Onless its those urban slang terms.

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  6. I might be off topic, but the day could also include don't push my triggers nor bring up heavy topics to make me depressed. Eg u must change yoour sin asap. I wish there was such thing as diologue with normal people!

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  7. Totally agree. In fact, I've put up two posts on my blog arguing that this is a bad idea and proposing going to autism sites and blogs (you're mentioned), leaving comments of support, retweeting feeds, visiting Facebook pages of Autism Sites and Blogs, and mentioning them on your Facebook page.

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  8. @corina thank you for your thoughtful reply. We will definitely take on board your suggestions for next year. And I also look forward to hearing about the experiences of you and other people with autism on Nov 1 :)

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  9. Hello Marianne,

    I'd hope you're not only interested in autistic experiences on November 1, but always.
    Also, our own national autism organisation is already telling us we're (autistic people) not supposed to be online on Nov. 1, in light of this 'wonderful' action.

    Here's what I have to say about Communication Shutdown:
    http://norah-liath.dreamwidth.org/4817.html
    (or http://blogwithoutatopic1.web-log.nl/blog/2010/10/communication-shutdown.html)

    ReplyDelete
  10. Thank you Judy, you raise good points, that while sharing, we do need to be aware that some subjects are triggers. So while we can mention difficulties, to remember to mention our strengths and how we overcome things.

    Julian Frost, very cool. Do you happen to have a link or something. I keep clicking on your name, but can't access your site.

    Marianne, I am hoping that while Nov 1st will be a big eye opener, that you remain interested in what autistic people have to say about their own experiences, and realize that the people best suited to speak for us are ourselves.
    I hope that you do take our words into consideration, because the autism community often excludes autistic people, and that is not right. We are autistic; the autism community belongs to us.

    Norah, you express yourself perfectly clear. Thank you very much. (I do have to mention though, that I'm not the Communication Shutdown website)

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  11. Maybe I've misunderstood, but doesn't this perpetuate the idea that autistic people 'don't' communicate? In fact they seem to communicate plenty, by writing, blogging, speaking, signing, through symbols, actions and what we too often term "behaviours". The problem isn't lack of autistic communication, it's lack of NTs being able to understand what is being communicated. (Though maybe I've got this wrong - I'm NT!!)
    We need a day of really 'listening' to all the varied voices and all the diverse methods of communication.

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  12. Yeah, I realise that, but it seems like this may be a place where the message will actually get through to the Communication Shutdown people too (I hope you don't mind).

    On Nov. 1, I intend to neither go offline, nor write any super-special blog posts or whatever. I doubt all that many NTs will be gone from the netz anyway: only a fraction of people who even have regular internet use will hear of it, and of those only a few will actually participate (and I don't want them to anyway). I don't want special days or weeks, people tend to forget about those issues once they're over or just don't bother with them after a few days or weeks afterwards (like New Year's resolutions).

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  13. @bbsmum, actually, that's it exactly. We communicate in a lot of ways, some of which NTs can't understand. But some of us do communicate in ways that NTs can understand, and we can help!! Especially when it seems that there's a lot of us who communicate online!


    @Norah, okay, I just wanted to make sure. I don't mind too much, I just didn't want there to be a misunderstanding.

    I kinda do understand what you mean there; it seems that there is a lot of people who forget about things once an event is over. Kinda of discouraging.

    It's okay if you don't decide to participate in Autistics Speaking day. It is a personal choice. My personal choice is to be as almost-spam as possible that day, and yours is to not. Personally, I'd rather that people remember all the time as well.

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  14. I know some people with conditions besides autism who are housebound or bedridden, and the Internet is their main means of communicating with any friends they have as well (not just Twitter and Facebook, but Livejournal and various other platforms). Whoever thought this up simply doesn't have a clue.

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  15. Very true, Indigo Jo. And this sort of thing excludes those people.

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  16. As an autistic woman I can not possibly support this campaign.

    Not only do I feel that the event itself does a disservice to our experiences as autistic people but I did some checking around about who is actually behind this campaign.

    This campaign is being run by the AEIOU Foundation which is dedicated to early, intensive ABA 'treatment'. It is, of course, run entirely by neurotypical people.

    The people with whom AEIOU has partnered with seem to be more of the same: Organizations dedicated to providing ABA or other 'interventions' which are run by neurotypical people.

    If this campaign was seriously concerned with the well being of autistic people the money would be going to organizations run by and for us so that we may advocate for our needs. As things stand the campaign in simply raising money for organizations with vested interests in reenforcing the stereotype that our nature is tragic and that we need fixing.

    Besides, disability simulations beget frustration which can only lead to pity which is just a cuddly form of oppression.

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  17. As the mother of a child with Autism, I do everything I can to be supportive, understanding, and encourage the same from others towards him.

    I started the Robin Hood Autism Foundation with the hope of encouraging awareness and understanding of how Autism affects a child and their family.

    I can't speak for my son. I can't claim to know what Autism is like. I wish my son could explain it to me. Though he has been diagnosed as high-functioning, and is very verbal, he struggles to explain his feelings and experiences.

    I appreciate all of your responses to Communication Shutdown. I'm always searching for new opinions and perspectives on Autism.

    My own reasons for supporting Communication Shutdown are personal. Twitter and Facebook have been important means of communication for me since my husband is in the military and now gone for a year, and I have no family or friends other than my two children, and one best friend who lives on the other side of the country.

    In no way do I expect going without Twitter and Facebook for a day will accurately simulate the difficulties in communication that some people with Autism struggle with.

    When I heard about Communication Shutdown, I didn't see it as meant for people with autism, but instead meant to elicit some for of empathy from NTs like myself.

    I intend to shutdown all communication for the day, except for with my children, of course.

    I've been stressed, worried, and heartbroken for years over the effects of Autism on my son. We celebrate in every accomplishment.

    I don't believe there is any one way to gain compassion and understanding from all NTs about Autism. Communication Shutdown is far from perfect, but it's a start. We have to start somewhere. A small step, potentially to gain a small positive outcome for those of us who desperately want to promote Autism with the heart, understanding, and empathy that it deserves.

    I've seen harsh debates and personal attacks over the many issues concerning Autism. I'm desperately looking for the positive. The negative is easy to find and become defensive and angry over. It's the small, positive victories that need the most help.

    The Autism community belongs to us all. My child has Autism. It affects him, his sister, his classmates, teachers, friends, his father, and me.

    As an NT, I don't seek to exclude people with Autism. I want to learn all that's available, advocate for those who can't advocate for themselves, and help further empower those who can.

    The Autism community needs all of the positive support it can get. Communication Shutdown for NTs. An Autistics Speaking Day is a great idea, also! Let those with Autism dominate Twitter and Facebook. Tell us what you want us to hear, what you want us to understand. I'll happily listen!

    Thank you so much to everyone who has taken the time to read this very long reply. :)

    I wish the very best for all of you,

    Rose Wade
    Robin Hood Autism Foundation

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  18. Corina,
    It seems that a lot of people are having problems connecting. My blog is at http://africanjungle.iblog.co.za/. The posts about this are at http://africanjungle.iblog.co.za/2010/10/16/communication-shutdown-still-a-bad-idea/ and http://africanjungle.iblog.co.za/2010/10/10/an-initiative-and-my-counter-initiative/. I hope you'll be able to view them.

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  19. @The Untoward Lady, I think I understand. Without properly directed and arranged, I can see how autism simulations would miss the point and just cause frustration. Which, if taken as autistic reality, just causes people to pity us. I for one do not want pity.

    I think though, that with the right guidance, autism simulations can be effective in relating at least a little understanding about our difficulties, and how tasks that are easy for them are hard for us. However, you're right; with this simulation where everyone is operating independently, the simulation doesn't work.

    Which is why I think that it'll be more productive to autistic people be loud, maybe approaching the spamming levels, online on November 1st.

    (also agree with you about where the money goes)


    @rosewade
    I want to thank you for listening and your willingness to learn from autistic people, and for including us in the autism community. My point is mainly that autistics often feel left out in the autism community, and in a need to develop online support, create the autistic community. I think there needs to be a merging of the two, and that self-advocates should be listened to in order to direct the future of our own lives. That's what I mean by taking back the autism community.

    Thank you very much for listening and your support.

    @Julian, yeah, still not working. I keep getting a 403 Forbidden error, that I don't have permission accessing the page from this server or something. I'm not entirely sure, I'm not very good with computer software.

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  20. I will not be shutting down on Nov. 1. I believe this is not a well thought out idea and will end up isolating those who it is meant to help. Its akin to taking away from a person his leg prosthesis to teach others what its like to have lost a leg to amputation. The only one who will not be able to walk is the amputee, those who are able bodied will still have their legs.

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  21. I am not sure that Communication Shutdown day is a good idea.

    I've read the arguments for it, and understand it to be a method by which to raise awareness. But I personally think that Autistic Speaking Day would be better. I understand trying to create a sense of empathy for those on the autism spectrum, but the truth is that many of us can and do communicate, in a variety of ways. I have Asperger's, I am verbal, and yes, I do have trouble expressing how I feel in words...but that is where writing comes in. I am a poet, and one of the ways I communicate my inner reality, both in general and how Asperger's colors my inner world. And also, how I experience the outer world.

    I, for one, plan to be vocal on November 1, via Twitter, Facebook, and so forth. I also plan to write and share a poem that day to add to the dialogue.

    -Nicole

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  22. Hi.

    As I have posted on a number blogs (mainly ASD authors), some in the ASD community simply don't get it. The fact is spending on services for persons on the spectrum is woeful where ever one turns. This campaign, whilst having a benign aspiration (sure 1 day without social networking is hardly "an experience"), is about RAISING MONEY for entities which provide autism specific services (whatever you may think of those types of services). This I would have thought was a good thing. I personally believe that the voices of autism on 1 November will be drowned out by the silence of those who are prepared to put their money where their mouth is and donate.

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  23. The communication shutdown is counterproductive.

    You wanna know what it is to be like us (ish. more than this)? Stop. Talking. Do ALL your interacting via text for the day. Even the 'experts' know that online communication is easier than F2F for most of us. So why on earth would encouraging IRL interactions in lieu of the intertrons convey ANYTHING like being autistic?

    Talk about Did Not Do The Research.

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  24. Andrew,
    It is YOU who do not get it. We know that services for autistic people are underfunded. Heck, spending for the disabled of ALL TYPES is too low. What we are protesting is the way you are going about it. Logging off from social media, the one thing that autistics can use to communicate effectively, is a foolish idea. Corina and I, amongst others, have suggested going to Autism blogs and sites on November 1st, leaving comments, visiting the Facebook pages of Autism sites, sharing them etc. etc. That would be a far better way to advocate.
    Kassiane:
    "Talk about Did Not Do The Research."
    QFT.

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  25. All the above is good stuff, and i agree with the doubters totally, but what many both pro and anti don't seem to be looking at much is just where the money is going. I suggest you go to the Communication Shutdown website (NOT the FB page) and check out who the 'autism partners' are in your country/state; ie who will be receiving the funds from the donations. At least one of those 'partners' has the word 'cure' displayed prominently on their logo, which makes me very uneasy. Though the organisation for my country is not of that mind, it is nonetheless an organization that while it does great work with autistic kids and their families, does sweet FA for autistic adults. So it won't be getting MY donation.

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  26. @Kiwigirl
    I actually have. #1) the website is horrible for people with sensory issues to navigate.
    #2) yeah, a lot of the autism partners are organizations whom I haven't seen a lot of good things from, if not are outright curebie and woo-sellers.

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  27. @Corina Becker: I must disagree in the strongest possible sense in regards to your reply to Rosewade. I believe very strongly that any legitimate 'autism community' belongs to us, autistic people, and only us. It does not belong to any neurotypical and they certainly do not have the right to "allow" *anyone* into a community which they do not own!

    @Andrew: I do think that providing money for services which are rendered without our involvement is a serious problem. Doing so entrenches the status quo where autistic people are second class citizens in our own community. This goes especially when said services are harmful for us as autistic people.

    Anyway, I wrote a piece on why this very point matters: http://vibratingsquare.blogspot.com/2010/10/communication-shutdown.html

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  28. @Untoward Lady, I think I get your point about the autism community. By all rights, as Autistics, the Autism community belongs to us, and our involvement should not be a matter of allowance by non-autistic members. I get that. It pisses me off that it currently seems to be the case though, which is why we need to take back the autism community, with our language, with how we talk about things, and to insist on taking part without saying "hey, can I do this?"

    which is part of the reason why I didn't rush and contact autism orgs to connect them to Autistics Speaking Day. We don't need anyone's permission to do this.

    I just don't want us to be automatically excluding our supports from our community, just because they're not autistic. People like our parents, family members, teachers and aids who really do want to support us, and want to understand us better to do so.

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  29. @Corina Becker: I understand what you're saying about alienating our supports but I'm not sure I agree that all of these supports are, in fact, allies. I don't know if I could ever consider someone who, for example, makes themselves the center of our community like many "autism moms" do can be considered allies. I think to be an ally you actually have to support the community you're allied with rather than colonizing and appropriating it.

    I feel that allowing people into our extended community just because they have something to do with autistic peolpe is something that weakens us in that it allows insincere or otherwise selfinterested parties to dilute our right to our own culture and movement.

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  30. This is a brilliant post, thank you.

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  31. Sorry for the delayed response, Untoward Lady, I lost track of things before I could respond.

    You do make a very valid point about supports not always being our allies. I think that in such causes, it's reasonable to say that such persons (who are more about themselves than the autistic persons) cease to be a supportive part of the community. However, they do like to high-jack the community. Which is the problem to begin with, and why we need to take back the autism community.

    Maybe make the autistic community the center of the autism community, and still have supports for our allies.

    But this has given me some things to ponder over.

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