I’ve decided to delete my Facebook account. I’m not just deactivating it, because it’s too easy to reactivate it in a moment of boredom or weakness. I’ve done the deactivation/reactivation cycle about a half dozen times this week, and I feel like I need a Facebook Anonymous meeting:
“Hi, I’m Rachel, and I can’t keep myself off Facebook.”
(Chorus of voices) “Hi, Rachel.”
“Hi. I’m going to my Higher Power on this, because my willpower is availing me not. It’s the same old story you’ve all heard: After a late evening foray onto Facebook, I think ‘Okay, I can’t take it anymore. I’m never doing this again.’ So I deactivate my account. Then, the next day, after I’ve slept off the whole soul-destroying experience, I think, ‘I can do Facebook. I am strong. I am invincible. I can reactivate it!’
I just can’t live like this anymore. (sniff) I need to let go. (sniff) Thank you for being here. (sniff sniff)”
(Chorus of voices) “Thanks, Rachel. Keep coming back! It works!”
So, that’s it. I’m going cold turkey. I’m deleting my Facebook account. You can do actually do that, you know. The Facebook Team doesn’t make it easy to find out how to leave “The Land of People Who Have Twelve Thousand Friends and You Only Have 89,” so I Googled “Deleting Facebook Account” and found this link. It works. You submit the deletion request, and if, by the grace of your Higher Power (however you choose to define it), you can keep yourself from reactivating your account for 14 days, said account is gone forever.
But don’t get the wrong idea from the title of this post. I’m not deleting my account because I think that the people who own and operate Facebook are bigots. I have no opinion on the matter, because I don’t know them from a hole in the ground. I’m deleting my account because too many people on Facebook express retrograde, mind-numbing prejudices about autism on a regular basis, and I just can’t stand it anymore. It’s like being on Usenet, except with commercials.
See, the problem with Facebook is the same problem we face in the age of AIDS. When you have sex with someone, you might think that you’re just having sex with that one person, but you’re actually having sex with everyone that person has ever slept with. On Facebook, you seem to be able to set up your privacy settings, choose your friends, and share tidbits about your life only with them, but in reality, all of your friends’ friends get to share with you. You get to read everything that the friends of your friends say in response to what your friends say, and some of the things that the friends of your friends say are well, let’s face it: complete garbage. In the past week alone, I’ve heard enough crazy-making prejudice about autism on Facebook to last me a lifetime.
To give you just one example of many: A friend of mine who works with autistic children and young adults mentioned that he’d spent the past several days in the company of people on the autism spectrum. The response?
One person said, “Story of my life. I feel your pain.”
What? Was that supposed to be funny? If someone had said, “I just spent the last several days with African-Americans” and had gotten the same response, more than one person would have been all over it. After all, people who are in touch with their humanity pretty much agree that it’s unacceptable to say something like that when it comes to race.
However, there is no such agreement when it comes to saying such things about autistic people, even to someone who works with autistic people, even though that person might, by some astronomically insignificant probability, have autistic friends on Facebook who might, by some astronomically insignificant probability, have feelings. Go figure.
And then there was the nice woman who mentioned that she worked with an autistic child and expressed her empathy for my friend’s (supposed) plight by saying of autism, “It’s a strange little condition.”
A strange little condition. That’s what I have. A strange little condition—a condition in which, by the by, I don’t know how to empathize, like this fine woman does. Okay dokey. If this woman worked with African Americans, I can’t imagine her saying that they have “strange little skin,” but apparently, it’s perfectly okay to say something like that about the very nature of an autistic human being.
Being an autistic human being who just can’t stand this kind of talk, I realized that I had to say something. So I quietly opined, “It’s only a strange condition if you don’t have it. For me, it’s perfectly normal.”
I thought that might quiet things down. But no. Someone else said, “But aren’t all of us on the spectrum?”
I couldn’t let that stand. I mean, I just couldn’t. So, I began, in an even tone, “Well, there is a neurological spectrum, and on that spectrum, some of us are on the autistic portion and some of us are not.”
I know, I know. It was like saying, “Well, you know, some of us have daddies who work in offices, and some of us have daddies who work on firetrucks” after someone has asserted that everyone’s daddy works on a firetruck. But, of course, that was hardly satisfying, because it didn’t really speak to the heart of the matter, so I decided to go for it: “And by the way, I thought [our friend] was talking about working with autistic people as a positive. I enjoy hanging out with autistic people. I also enjoy hanging out with non-autistic people—although they sometimes say negative things about autistic people when they don’t think that autistic people are listening, which is very troubling to this autistic person.”
Yeah, it was kind of an autistic thing to say. Someone else might not have bothered. But back in the day, before I knew I was autistic, it was just an ethical thing to say, and truth be told, it still is. I mean, how is it okay to say something like “Story of my life. I feel your pain” about hanging out with autistic people? Is it because we’re almost universally seen as a burden? A freak show? The walking weird? Why is that kind of statement considered acceptable? It was like hearing a “Jew joke” when the people involved couldn’t tell I was Jewish, except that no collective gasp went up from anyone else involved.
This kind of thing is simply prejudice, as defined by such unimpeachable sources as the Merriam-Webster dictionary:
a (1) : preconceived judgment or opinion (2) : an adverse opinion or leaning formed without just grounds or before sufficient knowledge b : an instance of such judgment or opinion c : an irrational attitude of hostility directed against an individual, a group, a race, or their supposed characteristics
And what are our supposed characteristics, on which we are judged, and laughed at, and stigmatized, and discredited, and dismissed, to the point that lots and lots of autistic people stay closeted for fear of losing their jobs, and their friends, and whatever level of acceptance they’ve managed to acquire from the world in which they live? Here’s the short list:
Rude
Lacking in empathy
Self-centered
Abnormal
Burdensome
Bizarre
Impaired
Disordered
Not quite human
I suppose if you think those things about an entire group of people, it’s perfectly okay to say just about anything about them. And then, of course, if someone from that group of people gets angry about it—well, it’s just further evidence that they’re just who you say they are, because after all, why should someone get so pissed off at an offhand comment, and be so blunt about expressing it, and not realize that she shouldn’t take things so seriously, because there was no ill intent, don’t you know?
I have only one answer to that: It’s because we’re perfectly human. I’m not sure how many people would believe me. After all, I’m autistic, and thus, discredited before I even open my mouth. But hey, that’s not going to stop me. Not anymore. I’m not going to step into a cesspool of this kind of bigotry if I can help it, but when I meet up with it, I’m going to interrupt it. I’m not going to give it a place to stand. I’m not going to be quiet. Not again. Not anymore. I’m done standing there, feeling sucker punched, with tears in my eyes, saying nothing.
The world deserves better of me. I deserve better of myself.
So I will continue to fight anti-autistic prejudice, but not on Facebook, which I only joined to keep up with friends, and where serious, considered, constructive discussion is virtually impossible. I can keep up with friends in other ways, and I have other venues for fighting the good fight—venues that are far more positive for me and far more constructive for others.
© 2010 by Rachel Cohen-Rottenberg
You gave voice to everything I’ve been feeling lately about the pitfalls of social media. Your narrative of this particular incident was arresting to me, because I have recently begun noticing that many of the traits that, for so long, I assumed were individual quirks (struggles with empathy and theory of mind, frequently missing social cues, phases of intense interest that interfere with normal life, etc) may actually be symptoms of Asperger’s syndrome. I have a few friends in particular who are fond of making jokes about autistics when they observe behavior like this in myself and others in our social circle. I’ve always frowned on this, because, exactly as you say – it’s just not ethical to demote people to second-class humanity because you don’t understand them as well as you understand your friends.
But now that I’m wondering if I may actually have AS (which I haven’t brought up with any of them yet), it feels shockingly more hurtful to hear them continue their “banter”, and it’s made me realize I should have been even *more* angry about it in the first place. Whether or not I ever get diagnosed, I am the way I am because that’s the way I am, and just like everybody else, I am doing the best I can with what I’ve got. I don’t *choose* to be socially awkward anymore than my friends choose to be overweight or ugly. Why are those “failings” somehow protected from public ridicule while mine are not? Why do they get to retain their full personhood despite not meeting an ideal, when I do not?
Hi Rachel,
Sorry to see you disappear from Facebook. Can’t say I agree but then everyone’s entitled to their own opinion.
The sad thing is that even if you remove yourself, those conversations will continue. People will always say the wrong things whether you’re looking or not. You’re just taking yourself away from having the ability to have your opinion considered.
The way I see it. I’m myself online. Slightly censored because I don’t want to offend anyone but generally myself. Recently I got an friend request from one of my cub scouts. I ummed and ahhed about whether or not it was unsafe to accept the request vs whether I’d hurt his feelings if I didn’t. After a couple of days I accepted.
I was sad. My blog posts automatically update themselves on Facebook and I thought that since some of my posts get a bit close to detail (inappropriate), I might have to either unfriend him – or stop the updates.
Then I thought…. I’m not being myself. Who am I?
So. If I do a potentially offensive post, I’ll attempt to warn and disclaim the hell out of it but I wont attempt to not be me.
People accept you for who you are – or they don’t accept you at all.
On facebook and in real life, you’ll always be judged by some. The question is whether or not you allow the opinions of the few drive you away.
On Facebook you can put “friends” on “lists” that limit their access to your stuff. I did that with a couple of young cousins who I don’t want to see all my stuff — not that there’s anything inappropriate on there, just me being overly cautious. In fact, after a particularly unpleasant family event, I put *all* the cousins on my limited list! I didn’t want to “unfriend” them because that might lead to more gossip. They can just think I went quiet on FB, whatevs…
I also “hide” people who get really annoying or offensive, some of my “friends” have very odd sense of humour, or check their horoscopes far too often and I really don’t want to see that every morning…
And I go and make everything as private as poss with the privacy settings…
Some ways of keeping the good side of FB and reducing the garbage, FWIW
It’s not my Facebook friends I’m having the problem with, and I have no problem with other people reading my stuff or seeing who I am. After all, I’m completely “out” to everyone. It’s the people on my friends’ lists–lists that sometimes contains hundreds of people–that pose the difficulty. I haven’t seen any settings that allow you to hide the comments of people you haven’t “friended,” but if there were, it would be like playing Whack-A-Mole. I’d be spending half my time just putting offensive people on my “hide this person and everything they write list” and by the time I figure out that they’re offensive, they’ve already made their impact.
for me, the facebook portion of this post is the secondary part, since we all know this stuff happens in real, versus unreal, life.
i’m with Rachel on this. in addition to all that she touched on, i guess i feel like FB is just too ‘easy’, and consequently much of the communication on it felt a bit shallow. it’s not surprising to me that people are less caring and mindful in this type of forum, though. i have been just as hurt.
the whole thing just got too annoying and pointless for me. if someone REALLY wants to stay in touch, well, hell, they can email.
Yes, the post was really about anti-autistic prejudice and how to limit my exposure (a necessity, because I’m a sensitive person) and how to fight it when I meet it (a necessity, because I’m a sensitive person). My experience with Facebook just brought the issue to the fore.
Once again, you’ve really made me think. Like you I’ve always spoken up. Don’t tell racists jokes to me or around me. Don’t be super ignorant and mean spirited or I’ll call you on it. I’m “rude” that way. But here at home, where everyone’s on the spectrum we laugh at some of our common characteristics. You know, like the other night my husband and I were watching Leno. He said something, and his guest answered and the audience and Jay all burst into laughter. I looked at my husband and said, “Wait. Why was that funny?” His answer? “Uh, I’m not sure.” To me that’s funny. Stuff like that. My kids arguing the literal semantics of something or whatever. I’ll also joke about my “Aspieness” to friends. I had one the other day that tried to “speak b/t the lines” on FB to me, and I joked that, being an Aspie, I had absolutely NO idea what she was talking about. (I don’t pick up on hidden meaning very well.)
After reading this post, I wonder if I should stop. If I’m somehow doing us a disservice in this behavior. I’ve always sort of just looked at it as, this is me, and I take some explaining and a little extra understanding, but it’s no big deal. Wow. It just didn’t occur to me I could be perpetuating stereotypes and making it difficult for others. SUX… I’ll have to re-evaluate. Thanks for the post.
i think from now on, i’ll just say, “i have a strange little condition.”
i agree, with ben–i think it’s part of a larger problem. not to say that i’m not entirely unsympathetic to the offending individuals. i have a problem with having my foot in my mouth, difficulty censoring, difficulty gauging into the future, and often mean to say one thing and it comes out differently. i do have a feeling that’s not what’s going on here, however.
i’ve done group home work, and i think the second comment is an indication of staff member burn-out. it’s not surprising that this happens. group homes are no stranger to the “otherizing” feelings and attitudes of the larger population. the main focus is on “normalization” and mainstreaming.
what does this end up meaning? usually the staff are engaged in a battle to stop “behaviors” that, in fact, the staff often engage in themselves. (no one fits the definition of “normal” imposed in group homes.) if someone came into my home and told me, “you’ve worn that shirt for three days (in fact, i often do)—go change it,” or “that toy collection is not age-appropriate. why don’t you buy shoes instead?” or “stop that stimming,” guess what? a meltdown is likely on the horizon… especially after hearing this kind of thing repeatedly.
so… many meltdowns, physical aggression at times, etc. revolving (and bitter) staff.
i’m not sure about the “strange little condition” comment. *shrugs.* maybe she’s been reading the dsm too much.
I’m glad and grateful you were on Facebook at least for a while. That’s how I found this blog in the first place and learned what Aspergers was and started to think that maybe I have it. I’ve been reading about Aspergers in every spare moment I have ever since. If I had not had contact with you on Facebook I don’t think it would have occurred to me to check out Aspergers as something that could apply to me. I’m just so hopeful right now because all this has come at the right time – most of the Asperger traits and experiences and struggles ahve come to a head in important areas of my life (work, home, love). Thank you Rachel!
Isabel, you’re welcome! And keep on being you!
There are things in life we all have to accept and deal with, and then there are times when you can (and should) remove yourself from situations that cause you undue stress. Facebook is great for keeping up with friends and family, but if it causes you significant distress, you have done the right thing for yourself. Sometimes doing the right thing for yourself isn’t easy, but I see you are trending more and more toward making these choices, and I think it is getting easier for you. Kudos, my friend
Hello, Rachel,
Through this blog, yesterday, I received my diagnosis. Through a counselor, yesterday, my diagnosis was confirmed. Through your eyes, today, I saw the Autie’s world, and confirmed that it is my own.
Having read from your first entry through to this post today, I am in gratitude to you for all you’ve written. Now I see that I’m at the beginning of a wonderful — if perilous, at times — adventure exploring and discovering Asperger’s and how it’s woven itself throughout my life.
Sage~~
PS: I laughed a great big roar of a laugh toward the end of your 4/23/09 post — I *AM* that Crazy Old Cat Lady! And I’m glad to be a brand new 70-year-old Autie
Congratulations, Sage! And welcome, fellow Autie!