Someone took issue with my advocacy for autistics and was bothered enough to create a Facebook account to impersonate me. Ridiculous, right? Maybe kinda funny?
Except that this isn't about me. It's about autistic advocacy. It's trying to send the message that we shouldn't stand up for autistic people, that we shouldn't confront daily instances of prejudice, that we shouldn't speak up to support autistic individuals in the community.
This example may seem insignificant. It is a mere shadow of the attempts to silence autistic individuals that happen every day. For autistic people, it's more complex and more insidious. When they write about being bullied, neurotypical parents joke about bullying them. When autistic advocates talk about being excluded from articles about autism, neurotypical parents complain that they deserve a platform, when they indisputably already have the platform. When we point out their bias of tragedy, they say we are trying to discredit them.
Let me point out a very real example of unexamined discrimination. Neurodivergent K wrote about people, herself included, being bullied, threatened, abused, or killed simply because they are autistic. A neurotypical parent who meant well and didn't quite think it through wrote - as a joke - "I, for one, promise not to kill you. I like you."
Many people talk in hyperbole. Many bloggers talk in hyperbole. Autistic people are not talking in hyperbole. They are talking about real, daily occurrences. They have been bullied - it happens every day. They have been threatened - it happens every day. They have been abused and killed. It actually happens. When we joke about it, we say this isn't a serious issue. We say it's not worth talking about. Joking about dismisses their experiences. It threatens them personally.
I'm not telling you about this incident to castigate the person who wrote this comment. The person who wrote it thought they were being funny. I'm telling you so you recognize that it happens and that it could be you.
When you haven't lived your whole life being seen as different, as Not One of Us, you do not understand what it means to live with the simple power of being accepted. When you have lived as a Them, as Different, as Not Belonging, you understand the methods that are used to keep you apart, to keep you quiet, to keep you from protesting.
I am talking about privilege. I don't mean "privileged" as in a wealthy, upper-crust, high-status, land-owner sort of privileged. I'm talking the privilege of being seen as One of Us, as Normal, simply by virtue of skin color, a physical body that works in certain ways, or a neurology. Most of us were raised to think we
are independent, we have power, and we just need a good attitude to get along in life. For example, I live in a racially diverse city. I can
go outside on my sidewalk and shuffle through my car. If a police
officer passes in a patrol car, he glances at me and I can feel his
approval - simply because I'm white. When a black male goes outside to
the sidewalk and shuffles through his car, the same police officer
(black or white) will give him a second look and suspicion - simply
because he's black. We cannot fully understand, if we haven't lived it,
what it means to be continually viewed with suspicion and disapproval -
and what harm that does to one's psyche - if we were not born into it.
Autistic people have been given the message that they are Not One of Us their entire lives. They recognized from a very early age that, if they wanted to avoid social disapproval, they would remain silent about injustices done to them. It costs too much to them. They were already singled out as different. They didn't have the privilege of being invisible in a group, in public, or in school. If they speak up when someone talks disparagingly about autism, disability, accommodations, then they will be pointed out as Not One of Us. Again.
Neurotypical parents are not the problem. We were taught this system of difference from a young age. We learned our lesson of social approval and disapproval just as surely as autistic persons did. But when we stand by silently or defend the status quo, we add to the problem. When we silence those who speak up for autistic equality, we become the problem.
When we talk about autism, we are not making statements out of a context, in our own individual stories, without regard to anyone else. We are not just blogging as a parent or conversing just as a person with an opinion. There is already a context. It is a context of Not One of Us. It is a context of prejudice, of abuse, of silencing. It is a context of the history of disability and all those who have experienced the disapproval of society.
I'm asking you to think about that.
****
I... disagree. To a point. Which is not something I do when I come here. But I feel compelled to point out that joking about a subject, does not necessarily immediately belittle it. In fact sometimes the only way some people can face serious subjects is to laugh. Humor can carry a person where other approaches fail.
ReplyDeleteI know in the case of my autistic son and our life together, there are times that if I didn't laugh, I would be hard pressed to move forward. And lets face it, sometimes he's funny. Even when he doesn't intend to be. It's amusing sometimes when he jumps and flaps his hands. It's more so when my husband and my daughter and I join him and we all jump up and down and flap our hands together. And my son...he thinks it's hilarious! He belly laughs and yells and holds our hands and encourages us to do it more. It makes him feel a part of the group. At the center of the whole...
When my neurotypical daughter does something funny we laugh... sometimes we even tease her. When my husband or I do... we laugh and tease. If we didn't laugh and tease Gage... wouldn't THAT be treating him as "other"? Not the same, different?
I couldn't agree more that autistic acceptance is of vital importance. And I can't tell you how much I admire what you do. Or how much I admire what many autistic bloggers do...
But we can't demand on one hand that people treat people with disabilities equally and then demand that they not in the same breath.
And I understand that sometimes our autistic friends may not understand the joke. But that doesn't mean that we as their friends cannot take the time to explain it.
And I understand that there are times and places where it's just inappropriate to make jokes. But understanding and forgiveness should still be available.
And that is not to say that friendly jokes or teasing is the same as bullying... which is never, ever okay.
But I would rather Gage learn to laugh with others... even if their jokes are a little bit ill timed or placed.... even if someone has to stop and explain the nature of the jibe to him... than have him grow up convinced that every time someone tried to be funny it was an attack on him.
I guess what I am trying to say is that while what happened here with this person being disrespectful was not acceptable. I don't think it's right to condemn all playful or joking or humorous attempts to deal with what is a very serious subject close to our hearts.... I'd so much rather someone with an open mind joke about it than have a closed minded person try to pretend the problem isn't there at all.
I think that when someone creates a fake profile in attempt to confuse people, we are no longer talking about parody or humor. We are talking about bullying and identity theft. I believe Brenda is being very calm considering. I'd not be so patient if someone created a Facebook profile pretending to be me. It is one thing to poke fun, it's another to try to persuade people you are someone you are not in order to harm someone's reputation.
DeleteYour examples of humour are very different from the example in the post, it was a joke about murder in a post about murder and abuse of a group where the author identifies themselves as part of the group that is being suffering this, that was not a place or a subject for a joke like that, in serious discussions this kind of humour shouldn't be used, it's not a safe place, it's not between friends or family, it's not even between people that know themselves enough to know their confort zones and it wasn't a joke between people from the same oppressed group about something both live everyday.
DeleteIt was a person with power writing a joke about not murdering the autistic author as a comment on a post about murders and abuse of autistic people, nothing funny about it.
That's why your example feels very different for me from the example on the post, your is a harmless humour between family and friends.
This explanation makes so much sense. I wonder if any explanation can ever make sense to people who know a priori that they are planning to disagree. But I pray something can be palatable enough, because the world isn't safe for disabled people when it is the way it is now. Thank you for trying.
ReplyDelete@Ibby, it is true that the world is not safe for disabled people. And, often, I do think that a certain amount of social isolation can be justified for the purpose of self-protection and doesn't necessarily have anything at all to do with autism itself.
ReplyDelete"Autistic people are not talking in hyperbole."
ReplyDeleteNo, I get that in reading K's blog over time. But her writing style (her choice, her right) is often one used in hyperbole. I get that it's an argument from tone-free zone. Again, her place to do what she wants. She should have that place and right to write any way she sees fit.
I winced when I saw that you had put the comment up again at K's blog. I winced at the original comment. Ouch. But also at your re-presenting the comment that he retracted. Ouch again. That felt like you were continuing something the commenter was trying to fix. And in some ways it feels like this post is doing the same. Am I defending the comment, not at all.
I appreciated K's response to the commenter on FB that there's a whole future to work on doing better. That was grace in action. That way hope in action. I hope that grace wins out and that people observing and reading in the circles just outside of that interaction can grow and learn as a result.
This is why I worry sometimes about commenting here and in other places. Because people trying to learn and grow learn best when their learning is affirmed as well, not just a spotlight shown on their big mistakes. None of us wants our mistakes to be the only thing people evaluate us on. And it's so easy to get an internet mob going.
In terms of someone impersonating you, that is wrong. It could be anyone for any purpose, and they need to grow up. I reported it and saw it sent a message back to you. Facebook is not very good at taking down pages.
I went back and forth about whether to sign anonymously or not, but this is important enough that I want my name on it.
Dixie
Some clarifications here:
Delete1. The comment was up a LONG TIME. Until people started saying stuff about it. A lot of stuff. It became clear that it was impolitic to leave it up. I made it clear it was in my threat file (it's about 2 feet thick). THEN it went away.
2. I would have preferred it DIDN'T go away because it was a perfect, crystal clear example of so much of what I was talking about. But. You know. Able dude being embarrassed by his crappy behavior. Can't have that. No documentation. Have to be able to keep declaring those Autistics to be overreacting, right? Very convenient (hello, I woke up on the cynical side of the bed this morning).
3. "Don't be sorry, be better" is hardly 'grace'. It's not letting someone off the hook. So many people were raised that an apology means everything is all better. Where I come from it doesn't mean anything but "I'm sorry I got in trouble" if you don't make an effort to change what got you in trouble in the first place. I think that's reasonable, but I think a whole lot of things are reasonable that apparently aren't. Rights and representation and other radical ideas.
I did not read the comments in real time. I wasn't suggesting you were letting someone off the hook. I was noting that you commented very directly to him, and it looked as if you dealt with the issue at hand with grace. And I agree that sorry is not enough, that changing behavior is the point.
DeleteCheck your facts first before you start accusing me. That comment we're talking about? I did not put it "back up" after he retracted it. It was up for days. I commented on it while it was still there. And still there. Before he ever retracted it. My comments? K's comments? The other comments? It's the only reasons *why* he retracted.
ReplyDeleteSo, when you're complaining about *how* I'm advocating, let's just be clear about what you're telling me. You think you're telling me to do is gracefully. I've done that. You're telling me to change my tone. I've done it that way, too. But you know what? You still don't like it. So it's not *how* I'm saying it. It's what I'm saying. That's subterfuge right there. What you really want me and K and other advocates to do is to *stop." To stop pointing out prejudice and privilege and power. 'Cause it makes you uncomfortable.
What K was saying was this: she's been abused. She's been attacked. This is literally, not metaphorically. She and many other autistic persons. And you know why it seems like we always hear about autistic people being insulted, separated, segregated, abused, attacked, and killed? Because our system, our beliefs make it okay.
If I haven't been clear about that before, and I think I have, that's what I'm doing here, Miss Dixie. I am challenging that system and those beliefs.
Why are you calling me Miss Dixie? That feels demeaning and belittling, Brenda.
DeleteYes, I went back to the post and you are right. You said it before the comment was retracted.
You are angry, and you probably have a right to feel that way. You can feel what you want about me. I've never said it was how you said it, I have said in the past it is WHAT you are saying. Because I disagree with where this ultimately ends up, Brenda. I feel that you sometimes dangerously put a spotlight on some people who are struggling. I feel other people do that in other camps. I disagree with that. I don't agree that it leads to healing and maybe working together for common good. And I don't mean parental good.
You may be far more enlightened than I am, but it doesn't mean I haven't learned or grown or have some growth to do in the future. Signing off and out.
Putting a spotlight on prejudice and a system of power is what I do. "Common good" implies everyone needs and deserves the same. "Healing" implies it is all of the autistic community who is need. Here's what the community needs to hear: There is a big, dark secret in the autism community. Autistics are seen as less-than. They are talked about, rather than talked to. They are discussed as if they are science experiments. They are told they need to change, not us. That's what I'm talking about. And it's dark. And it's painful. That might not be the message you want to hear. But it's the one that needs to be heard.
DeleteI will continue to read autistics blogs as I have been doing. I will continue to think about and evaluate my perspectives as a result of reading these sites.
DeleteHi, Brenda,
ReplyDeleteStay tough. Your blog is excellent;well-written, and very thoughtful. It should give people pause to....think. Thinking is a good thing.
A few of my thoughts:
1. I agree with you and believe you're right on point.
2. I think "joking" is often veiled hostility and can
be passive-agressive and/or mean.
3. Far too often if a topic makes people feel "uncomfortable,"
then attempts are made to silence the messenger. That's
why I admire your courage for standing your ground.
4. Yes, people with autism are often treated as "less-than."
Yes, our children are often treated like science experiments.
Yes, our children are expected to "conform" to the NT world.
Yet, we, as caring parents and advocates must speak up. We
can make a difference.
Silence does nothing. Silence is cowardly. Since perpetuates
(bad) situations.
5. The "silencing" of people goes on far more often than we
realize.
A related story on "silencing":
Two decades ago, when I was reporting a story on the
effects of "passive smoking," our TV station was threatened
that all local advertising would be pulled if we aired the
story. I was told by a giant tobacco company that my a**
would be dragged through court for "the next thirty years" if
I got one fact wrong. I told the tobacco co.'s bullies /
executives that I deserved to have my "a** dragged through court" if I got a fact wrong. But, their attempts at intimidating
me would not stop me from reporting a story that needed to
be told.
The same was true in the early days of HIV/AIDS. Threats were
made if information was reported, or even if research was
conducted. Where would we be now if reporters and researchers
had allowed themselves to be silenced?
6. We must all speak up. As Gandhi said, "Be the change you
wish to see in the world." Doing so, means having courage
and working for the common good. Even if it's dark, painful,
and it's not the message people want to hear.
If people remain silent, then they are condoning actions.
Let's hope the autism community can come together, speak
up, and help make the world a better place for our
children. We can do this. We must do this.
Brenda, thank you for your outstanding advocacy, and for speaking up.
Never allow others to silence you.
my best to you,
Elizabeth Jackson (please publish my name;wasn't sure of how the
posting works on this site)