Wednesday, February 26, 2014

I Want To Be An Approachable #Autism (self) Advocate

A few weeks ago I made a mention on my personal page about some comments I had heard recently from Bean's attendant care worker, and a few other people that were less than politically correct. Some of the comments were downright insensitive, and misinformed. My special needs community friends on FB were appalled. I was as well, but I saved that reaction for behind the scenes.

Why?


Well, let me illustrate it for you, because it's better than just giving a simple answer. Have you ever been in the company of a friend (or even an acquaintance such as a coworker that you may not have a choice whether or not to spend time with) that you have to watch your every word, because you know one trip up is going to lead to a soapbox rant? Maybe they're a vegetarian, or hate Obama, or love the rainforest. They have passion, mixed with what appears to be some anxiety, and resentment when presented with ideals that clash with theirs. They have a lot of knowledge, so any argument with them is likely going to end up in a battle, even if it is one made of an epic straw man. You know that it is not worth your time to go there with them, so you find yourself cherry picking your words around them. You avoid known hot button issues, and maybe even avoid them if you can help it.

Quite simply, I don't want to be that person in everyone's life that they avoid, because I scream "Ableist!" at their every unintentional remark that offends me. Maybe, I might be more polite than to call them an ableist, but no one likes to have conversations with people they know who are just waiting to correct them. That doesn't feel like friendship, or a discussion between equals. It feels like a lecture about how much a sucky person you are.

This doesn't mean that I never correct people when they say something unintentionally offensive about autism, or disabilities. Sometimes, I do. Sometimes, I bite my tongue. Usually with most I figure I can lead by example. I assume they will be able to learn as they get to know my children, and hang around us. If they say something incorrect, or offensive I try to figure out a non-confrontational way to explain the difference to them. Something like "Well, we really don't view autism like that." Most of the time I feel my actions speak louder than words. Our home is pretty happy, and I think others take notice of that. I think they see that, and know the usual tragedy model won't apply here.

Before I end this, I will say that there are some that are just busybodies. They might think they're being helpful, but it's more than likely this type isn't aiming to be helpful. They are toxic. I don't mean someone who is a little annoying. I mean the people that are just vile, and extreme. They are sure to criticize everyone. They know more about your life, and how you should live it better than you do. They know all about autism, and can cure your child's autism (as if it were separable from the person)- if you'd just listen! I don't see any value in even trying to engage these types with any conversation about your views. They don't care, and they won't hear. It really is a waste of time to tell them their words are offensive. Tell them thank you for their advice, or whatever and move on with your day. It's not worth the emotional turmoil to engage them.

Educate with kindness, and respect. When we do that it opens a door to future learning. Don't be that person that makes everyone nervous, or that they avoid. Be the person others come to to ask questions. Be a person you'd like to approach to talk about an unknown, but  delicate topic.

18 comments:

  1. There are a lot of really angry advocates out there and when I tried to say, "hey, maybe you shouldn't express yourself so angrily all the time" they got angry at me and banned me. lol
    If your aim is to educate, that usually takes the way you're working - trying to be calm and patient (and pick your battles). If your aim is to only sit around and be angry with other angry people, then well, some people are really good at that.

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    1. Yes they are! I once had a conversation with someone I know about how disrespectful saying they hate autism is. They read something from an autism parent blogger that was really just a rant on how people should think. Then, they read mine, and said they had to really think on what their beliefs were. She said the first one told her what to think in a way that just pisses people off, whereas mine gave a well thought out explanation. While I hold the same thoughts on the subject as the first blogger the way I expressed it was completely different. Delivery matters.

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    2. I agree with you both. Doesn't matter what the topic, if people think they personally are being attacked they will shut down and not listen no matter what. It can even be counterproductive because they may associate the viewpoint with the "attack" and be more hostile to it in the future. Or they might see proponents of the viewpoint as "the sort of people who go around attacking others." But I don't feel comfortable biting my tongue either, because it also does harm to be silent. For one thing, if people with ableist beliefs do not question them and change what they say, the social environment will remain toxic. For another, even if objecting to an ableist message doesn't change the speaker's mind, it shows support for and solidarity with the people who are hurt by it. So it's a delicate social and ethical dilemma! (Exactly what people with atypical language and social communication styles don't need, right?)

      So the million dollar question: how to communicate an alternative, not-ableist point of view in a caring way? I'm working on this and I think I'm getting there with writing, but haven't figured it out in real time yet. What's worked for you both?

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    3. I think just by stating one's opinion in a well thought out manner does wonders. Just stating what you feel, and why, but not attacking the other person in the process. Ask questions. Don't just tell the other person they pretty much have to agree, or they're a shitty person. Also, realize when someone is just being a jerk, and when they're really open for discussion. If the other party is just full of hate, and anger then we should still voice our thoughts about their discrimination/ableist views, but do so more for the benefit of the others listening. Debating with most people won't change their minds, but we can't just stay silent on important issues that matter. Saying something, like you said, shows support for the other side. We can't be silent in the face of discrimination, but we can't always expect the other side to understand our POV. There are some people out there that will never see autism as more than a normal person being trapped inside a damaged brain. They can't accept their children's differences, or anyone else's. The best we can do is try to control the damage they do by spreading hate. We can't do that by also spewing hate, and anger.

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  2. Every voice at every volume is valuable, but we each must to choose how to express ourselves according to our nature. My tender heart quakes at emotional outpourings, even when they are righteous. I take a step back, as if they are infectious. That does not mean I don't support and idea or stance, I just need to express it in a manner that melds with my personality. Respect, even for people who disagree, is essential.

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    1. My personality is pretty strong. If I don't keep it in check it is kind of in people's faces. It takes work for me to temper my reaction to others sometimes.

      Thanks for your comment!

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    2. Ha, I'm the worst of both worlds. Sensitive like you, Lori, but when upset I'm kinda loud and hperbolic like you, Quiet Contemplation. Can't take what I dish out. It always drove my mother crazy, lol. ;)

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    3. I'd be lying if I said I wasn't seriously sensitive to criticism! I sure am, which is why I can get so worked up so quickly sometimes, I take things personally.

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  3. This is very true and I think, ironically?, a strength for aspies to see the value of diplomacy.

    I struggle with the issue with my husband. He's so vocal and critical and debative on his beliefs (especially on FB) that he's had some of his best friends unfriend him! Now it makes me sad that no one sees his posts!

    I try to tell him that this is not the way to convert folks to your views... I think that autistic parents do a better job of this (diplomacy) than NT parents of autistic children. I don't know why. Do you think so?

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    1. I think yes, and no. I see a lot of very angry autistics that make their whole life about fighting discrimination, which is not a bad thing in, and of itself, but their methods are over the top. There's a few that I will leave a group, or thread if I see them intermingling, because they are SO outrageous that I don't even want to risk being a target of their rage. They see malicious intent in everyone's motives (even when there is none), and will not hesitate to make their smear campaigns public if they feel slighted by someone.

      When it's parents of autistic kids negative reactions tend to be knee jerk emotional ones. Like someone asking them about their child's behavior in a public place in a manner that could have been nicer. Instead of using that moment as an opportunity to educate the person they lose cool, and tell them off. Now that person doesn't know anymore about autism than they did before this encounter, and they're too afraid to ask another autism parent again.

      So, I guess the short answer is that it varies. Thanks for your comment!

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    2. I really don't know many (if any) adult aspies. I only have aspie peers online where they tend to be introspective and thoughtful (like here :). So it makes sense that each individual would have different ways to approach advocacy.

      I do have very strong and passionate feelings about things but I am also extremely conflict averse. My social awkwardness also fuels my avoidence of conflict. So I probaly err on the side of not pushing enough. I do see those folks who are over the top with their anger and I also think I don't want to be seen as "the crazy parent".. the one that the teachers avoid and talk about.

      I do see this in other areas, not just autism. Where we loose focus of the big picture and the bigger world out there. Before I had heard of Asperger's, I didn't know anything about it and would have said many ignorant things I am sure! Now I know things and even though its a pain, its important to educate educate educate... not argue.

      What a great point for discussion!

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    3. Yes, I think you made a very good point. I remember when I knew nothing about autism, and little about disabilities. I had a ton of misled ideas, and used a lot of poor language. I didn't know any better, and never would intend to offend anyone. I would not have responded well to anyone going off on me for not knowing more, instead of explaining to me. People don't respond well to being attacked. It rarely changes their ideas about the subject, because they can't hear the other person's point above all the anger.

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  4. Yes this. I think you and I feel very similarly about this. The worst part for me is that biologically (age wise), I'm part of the demographic of angry autistic people who don't hesitate to jump on anyone who even makes a thought that makes someone a tiny bit uncomfortable. It makes me incredibly scared to engage with anything or anyone, and I'm on their side! While I believe (firmly) that anger has its place, I think compassion and taking a step back has more of a place. Sure people do things that make me angry. But most of the time, the intent isn't malicious. I can think of only one time that there was malicious intent, and it ended badly. When intent is good, there is almost always a way to work through the bad and get to the good. Yes, it takes more effort than it does to be angry and yell and tell someone they are a horrible person. But the outcome is sooooooooooo much more rewarding.

    Anyway, thanks for writing this post. :)

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    1. I also agree anger has it's place. There's a few subjects where I can come out swininging if the other party doesn't back off quickly. One is blaming autism on vaccines, and the other is supporting parents who kill their ASD kids. The only reason is because both of those things lead to deaths of innocent people. I also mean that in the way of it directly being the conversation. I say that, because I have seen many of these self advocates use the mother killing autistic child card to somehow justify their point as valid when the subject is not even close to being about that.

      Thanks for your comment, and keep up with the awesome advocacy!

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  5. It took me a while to come to any real conclusion about advocacy and respect. But I eventually decided that we all have the right to advocate for ourselves the way that we want, but we need to be aware of the reactions we then get. I really like your thoughts on this topic xo

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  6. Just wanted to clarify, I deeply respect many of the autistic advocates who *are* angry and in-your-face, especially as some of them were there at the beginning when there was no autism community yet and nobody had heard of neurodiversity. They've gone through hell and paved the way for us to speak more gently and be taken seriously. In many cases I agree with what they say or write, and there've been things they've changed my mind about.

    But when I want to teach someone about autism who knows very little, I usually direct them to people who can provide a more welcoming introduction. I've often asked people to read Elizabeth Grace, Lynne Soraya, Amy Sequenzia and Ido Kedar. I think I've recommended posts from most of you too, and will make a point of doing so in the future.

    I really like what Ally Grace said. Everyone has the right to speak about all the identities they have, and the choice of how to speak about them. If anyone tries to silence any autistic activists for being angry I will defend their right to speak. But for the reasons you've all raised, I personally am choosing to express myself differently, and am glad to not be alone in that.

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    1. I agree. It takes all types to temper the world. We can't all be meek, or angry. Sometimes, we need the fiery ones to get stuff done, and other times we need a gentler approach.

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