Disability and Representation

Changing the Cultural Conversation

On Leaving Community and Taking a Hiatus

In the past few days, I’ve made a decision to separate myself completely from the autistic and autism communities. As many of you know, I’ve felt alienated from these communities for some time, but I had not ended my involvement in them entirely. At this point, for my own health and peace of mind, I have to. I am deeply, deeply exhausted by my involvement and I need to scale back on a great many things.

So, in addition to leaving these communities, I will be letting go for awhile of any online activities that don’t directly involve my academic work and my internship. Because I began this blog as part of my graduate program, I will post to it if I’ve written something particular to the focus of my coursework, but otherwise, I will be taking a break.

I have already let people know on my private Facebook page that I’m taking a hiatus, but I’m realizing that I have many more readers than I have Facebook friends, and I need to say something here about what is going on. I could just leave a brief announcement to let you know that I’m taking a break. But the very reason that I’m withdrawing from participation is the very reason that I need to say something more.

I’ll put this as succinctly as I can: in the autism and autistic communities, I have become afraid to speak my truth. And so, as you can imagine, writing this post is very, very difficult.

There are many reasons that I have come to this place, and it didn’t happen suddenly. There was no one event, no one crisis, no one person who has brought me here. It was an accumulation of many things.

Part of it has to do with personal attack. In the past four years and a half years of blogging and activism, I’ve gotten hate mail, I’ve been publicly maligned, and I’ve been privately trashed. I’ve had people accuse me of things I haven’t done and of intentions I don’t have. It’s not that I mind people having at my work. That doesn’t bother me. When I put my work out there, I expect that people will be all over the map with it. It’s that I mind people having at me.

So I tried to minimize my involvement as much as I possibly could without leaving altogether. I turned my attention to cross-disability issues. I ended any and all political involvements. I stayed well outside the blog wars. I stopped posting to autism blogs and forums.

It hasn’t mattered. The us-and-them lines in the autism and autistic communities are so complex, and they intersect so frequently, that it is nearly impossible to stay outside of them.

No, not nearly impossible. Absolutely impossible. I cannot figure out how to stay away from one line that someone has drawn in the sand without finding myself on the wrong side of another line someone else has drawn in the sand. The result is that there is no safe space on which to stand — no place in which I can simply speak without risking attack.

It’s not that I care what people say about me. People talking about me on the Internet has no discernible impact on my life. I haven’t lost any friends or the respect of people who love me, and I don’t expect to. It’s that I’m tired of being in the gale force wind of these attacks. I’m always bracing against them, and I don’t have the energy for it anymore. When the attack comes, I don’t respond to it because I know that addressing it will only start another round, and I absolutely refuse to go there. But the toll it’s taken on me to restrain myself from responding has been fierce, and I’m very tired.

It’s the whole culture of attack that’s become so wearying. It’s not just that I’ve been attacked personally. It’s that I watch people attacking each other on a consistent basis. There is very little restraint. In fact, there seems to be a belief that to liberate ourselves from our own pain, or stress, or isolation, or oppression means that everyone can say whatever they want, however they want, to whomever they want, about whomever they want, any time they want. In fact, no-holds-barred expression seems to be the only rule of engagement we have here.

I talk about people having a dialog with civility and respect, and I feel very old and quaint and irrelevant, and that’s on a good day. On a bad day, I’m accused of trying to shut people up — which, in my personal value system, is one of the worst accusations anyone can launch against me. I’m accused by parents of trying to get them to sugarcoat their pain and stress and fear. I’m accused by autistics of attempting to silence them about their oppression. Basically, the message is that I’m either a mindless idealogue attempting to suppress the voices of parents, or I’m a privileged asshole attempting to suppress the voices of oppressed people.

Guess what? I’m neither. Those are someone else’s constructs, and they have nothing to do with me.

I’ve said it many times, and I’ll say it again: You can speak your rage and your pain and your grief without inflicting blunt force verbal trauma on other people. Really. I swear to God, you can. I’ve been doing it for many years. Repression is not even in my vocabulary, but neither is letting loose in the public square.

I’m not all about respect and civility because I’m trying to silence people. In fact, quite the contrary. I’m all about respect and civility because it’s the only way to guarantee that people will feel safe speaking at all. When I walk into an online forum and see people attacking one another, I stop participating, because I know that whatever I say, someone will have at me. It’s inevitable. When people are just letting loose, the anger starts to miss its target and everyone is fair game. I’ve watched it happen to others, and it’s happened to me. Anyone involved in the autistic and autism communities knows exactly what I’m talking about.

And that means that anyone who doesn’t have the stomach for being attacked, and who doesn’t want to watch other people be attacked, is going to go silent. There is no room for a mediator, no room for someone to be ignorant (God forbid you don’t have it all figured out before you walk in), no room for people to try to just work out the mess in their heads and come to some understanding about what the hell is going on in their lives, without the risk of being told You’re not like my child, so shut up or Check your privilege, you ableist asshole or something else that is sure to shut down conversation as surely as I’m sitting here.

It’s not that people who say these things aren’t sometimes right in the substance of their criticism. Sometimes autistic people say things about autism that have no relevance at all to what a parent is dealing with. And yeah, sometimes parents say things that are crappy and ableist and destructive. Of course. Yes. No argument there. But having at people doesn’t move along dialog or create community. It shuts it down and fractures it.

And this is why I’m leaving. Because we’re all carrying a heavy burden — every one of us. We’re all carrying burdens that no human being should have to carry alone. And there are people who have given up on speaking about their burdens and their grief and their pain and their isolation because risking attack — and watching people attack one another — brings one more burden that they simply cannot bear to carry.

I am now one of those people.

Everywhere I go in my life, I see suffering, and isolation, and indignity. And I know that what I see with my own eyes is happening everywhere. For all of the breath-taking beauty in this world, the suffering that we inflict on one another makes me wonder whether Huxley was right, and whether this planet is really just another planet’s hell. For me, the only thing that makes living in a world of suffering bearable is the belief that someone, somewhere will treat you with dignity and civility and respect, and that you can do the same. That is why there are words for these things — they create islands in time that make the suffering of the world bearable.

We don’t have enough people holding those spaces in either the autism or the autistic communities right now, and because we don’t have them, people are afraid to speak their truth. And, as far as I’m concerned, any community in which people are afraid to speak their truth really doesn’t merit being called a community, because being able to speak without fear is the very basis of community.

So I can’t stay. I have to rest for awhile, and I have to create those spaces of civility and respect elsewhere. It’s the only thing that makes trudging through this world of pain worth the doing.

So please take care of one another. And please stop having at one another. And please just talk and listen to one another. Please.

© 2013 by Rachel Cohen-Rottenberg


    24 comments already | Leave your own comment

  1. 5/5/2013 | 1:45 pm Permalink

    Be well, Rachel and take good care of YOU. I received your email, and I will be in touch. <3

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  2. 5/5/2013 | 2:19 pm Permalink

    I value your wisdom and insight. Best wishes to you.

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  3. 5/5/2013 | 3:33 pm Permalink

    Thank you for the contributions you have made to my education. I hope your well-earned rest energizes you to do the academic work you love.

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  4. 5/5/2013 | 3:49 pm Permalink

    I echo the sentiments above, you’ve taught me a lot and yours is the blog that I wait for and read immediately, so I will miss it. Take care.

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  5. 5/5/2013 | 4:58 pm Permalink

    I understand. I, too, am depleted. Everywhere I go, there is a battle. There are battles every day in the world at large and then I come to Autistic community where there should be peace, but it is often even worse than the outside world.

    You have done so much good. You deserve to rest. I support you in your decision to take care of yourself. Be well.

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  6. 5/5/2013 | 5:13 pm Permalink

    What you have written here strikes me at my core – I am silent for the most part because I do not want to be in that maelstrom. I admire you for not only having the courage to share, but also the courage and wisdom to nurture yourself. Wishing you all the best, no matter where your journey takes you.

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  7. 5/5/2013 | 5:35 pm Permalink

    This is exactly why I have pretty much stop speaking. You really spoke to my heart. I’m sad because I haven’t found your blog till now. You are a beautiful writer. (((HUGS)))

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  8. 5/5/2013 | 6:58 pm Permalink

    I will miss your humour, sense of reason and dignity. I have been close to where you are, and I am only hanging on because of a small group of devoted friends. I hope you are happy and well and can find your peace wherever you go from here. I am sorry for the way you have been treated, and I hope I have never been part of the burden for you. If I have, I apologize now. Be well, and follow your joy.

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  9. 5/5/2013 | 7:17 pm Permalink

    Be well, Rachel. Thank you for your contributions to so many, I’m so saddened that it’s come at such a cost for you. Please do what you need to do to take care of yourself.

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  10. 5/5/2013 | 9:11 pm Permalink

    everyone should do this periodically. there’s no way to do what is important without taking a break, redirecting or moving on. I’m shocked people don’t do it more often.

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  11. 5/6/2013 | 8:33 am Permalink

    I get it. Just dipping my toes in the comment threads leaves me burnt out sometimes–I’ve never been brave enough to swim into deeper water with a blog of my own. I hope to “see” you here again someday, and that trusted people are creating islands in time for you, wherever you are.

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  12. 5/6/2013 | 11:32 am Permalink

    But I just found you…

    Be well, feel safe, and take care of yourself.

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  13. 5/6/2013 | 1:31 pm Permalink

    I just discovered your blog (through Dave Hingsburger’s blog) – and I have looked forward to reading your intelligent measured words, so I am sad for that.

    Please leave the archives up – people like me will continue to find the value, and wonder at the mind that sees things so clearly.

    You have expressed very eloquently why you are leaving: there is no safe place to stand, even when being civil. I wish you peace as you try to forget the bad parts. I hope there were also many, many empowering, good parts for you – because you speak to truth.

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  14. 5/6/2013 | 6:20 pm Permalink


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  15. 5/7/2013 | 5:02 pm Permalink

    I can relate to the feeling of having to step back and take a break.

    You will be missed, but when and if you get to the point you feel that you can return, we will welcome you back with open arms. Just do what you need to do right to take care of yourself, because that’s what’s most important.

    Be well,


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  16. 5/10/2013 | 6:49 am Permalink

    I’ve been following your blog and fb page for sometime now and I cannot thank you enough for all the things I learnt from them. It helped me realise I’m not alone in all this and the ableism we deal with is NOT how things should be. People like you give therest of us strength to shout louder. Thanks a LOT! I hope you stay safe wherever you are and can come back someday refreshed.

    Wishin you best,

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  17. 5/11/2013 | 6:47 am Permalink

    i also only just found your blog and i hope you will leave it online.
    i totally understand where you are coming from but it scares me to see that it seems that – like in most controversies – those who put the effort in to hold up their argument with research and thought are the ones that get burnt out by the sheer amount of and the graveness of attacks of “the other side”.
    i hope you can find some peace & quiet and maybe come back in a different form and with less engagement. but please, from the little i see now, be present in the discussions because people like you are valuable to everyone, EVEN to those that may still be opposing you now.

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  18. 5/13/2013 | 4:30 pm Permalink

    Politically-based “communities” are so so incredibly toxic – well, I’ve had decent experiences with anarchists in my area but I know I just got lucky there and it not being based in identity politics probably helps – and I support everyone removing themselves from them. It’s so deeply rooted, and kind of invisibly, in even the “better” places. I got out of the autistic/disabled/MH “communities” gradually over the past half year and it helped me a whole lot. (I can produce original speech so much easier now, lolwut?) I even stopped reading the blogs (which is why I only saw this just now).

    I doubt there’s much hope for any of this to change without many people radically altering the ways they think. And it took me a somewhat traumatic experience to do that myself, despite trying very hard over the course of a year and a half to improve my attitude, so I don’t have much hope even for that. The human mind can be such a death trap. :-\

    Stay well.

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  19. 5/14/2013 | 3:55 pm Permalink

    I’ve never been very involved in the autistic community, but the people I’ve run into have always been very nice. I never realized there were “check your privilege” people in the autistic community. Why would people fight over that? You’d think they could all work together and realize hey we’re all going through this. I’m sorry you’ve been dealing with that, and I hope things get better for you.

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  20. 5/23/2013 | 4:07 am Permalink

    I have just seen your blog a couple of times and it struck me as very sane, well written (to an envy inspiring degree) and something I intended to revisit. Sorry it will not be there but glad to see that you are largely appreciated, and hope this will provide some solace for the unfortunatel difficulties you have experienced. I wish you all the best and hope you will feel the desire and ability to return at some point in the future.

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  21. 5/28/2013 | 2:39 pm Permalink

    I saw a graphic today and wondered what you would think of it. I miss you online but I u derstand the need to take a hiatus and focus on what is important personally.

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  22. 6/2/2013 | 11:31 am Permalink

    Those last four paragraphs are beautiful….

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  23. 6/24/2013 | 1:54 am Permalink

    Very sad to see that you have to go, but I do understand entirely. As an empath diagnosed with AS, I often rely on withdrawal methods whenever I am feeling overcome, for whatever reason.

    I have been reading one of your sites for some time now, and have only just discovered this one. Thank you for being such a strong and courageous person for those of us who couldn’t articulate ourselves quite as coherently.

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