So the new data is here (are here? hmm), and I find it almost entirely meaningless. It's "new". . . from 2008. It's a moving target. If we could compile data instantly, that data RIGHT NOW would probably paint a better picture of reality. So we've moved from 1:110 to 1:88. . . meh. Maybe it'll be 1:57 when the "new" data for 2012 comes out in 2016. I say "almost" entirely meaningless because obviously we have data that shows an increase (a pretty substantial one) and to me in my tunnel-vision Lilycentric world of autism, that means that the attention of government to the issues of funding and services and the like will be front and center as opposed to what data showing a decline might presage. (ie,. . . "Alright, looks like we got a handle on this here 'autism' thing, let's spend more money on missiles!")
But looking at that data and applying it directly to life is like studying air by spray painting the wind. You're not actually looking at the air, you're looking at how the paint is affected by it. You're not looking at the people. You're looking at the effects of the people on the data. These ARE people, not data.
Usually this blog is more or less "slice of life" type stuff, and as such I avoid pissing people off because I avoid "issues" and just talk about our lives, but data notwithstanding, I was alternately bummed out and pissed off over a renewed "discussion" between parents and self advocates a couple days ago. In the midst of Wednesday's hullabaloo betwixt self-advocates and parents on one of my favorite blogs, I kept returning to that mantra, "These are people, not data."
The topic of the blog in question isn't germane to this post, because you can insert whatever topic you like central to the autistic community:
Love Autism/Hate Autism
Person first language/um. . . NOT person first language (there's probably a term)
Environment/Genetics (maybe this is a bad example)
Both sides were using the idea that the other side shouldn't be offended because they a) weren't autistic, or b) a parent, interchangeably and without irony: "Let me tell you why I'M offended by your statement, and why you can't dictate what is and isn't offensive to me, and why YOU shouldn't be offended by what I just said." Copy and paste the previous statement and apply it to either side of the discussion. Parent, meet self advocate, self advocate, parent. These are people, not data.
Data IS important, but what is MOST important is that these are people we're talking about. They are parents, autistics, sons and daughters, brothers and sisters and in some cases. . . "several of the above". They are people who ARE offended by being told how they should feel. Tell me how I should feel about almost any topic and I'll tell you I find that offensive EVEN IF I AGREE. But I'm stubborn like that. Because I'm just a person, you know, like all you other people.
I think what unites us all (apart from the mildly tongue-in-cheek aforementioned offensiveness): We want what's best for ourselves and those we love. And we want it PASSIONATELY.
Let me briefly sidebar into my personal experience with fighting:
I love my wife. She's one of the best human beings I know. She is loving and caring and compassionate and thoughtful and, and, and. . . but we still fight, and it is only after the emotion of hurt feelings, stubbornness, and anger are dulled by time (sometime long after the 'sorries' are spoken) that I'm able to acknowledge and accept, "This wasn't about her being spiteful or cruel or selfish or stupid. This was a misunderstanding, or a difference of opinion." She wants what's best. I want what's best. When I force myself through my anger to remember that I love her, and why I do, I remember to trust that she didn't hurt my feelings out of spite. . . that the fight was probably because we were discussing something about which we are passionate and, being people. . . we offended each other. Apologies are hard because I'm proud. It takes a while for me to cool off. I'm a person.
Since I've joined the blogging community, more specifically the parent blogging community. . . even MORE specifically, the austism parents community (I can't say autistic parents, cause I'm not autistic, but I hope you know I mean, "parent of an autistic child") one of the things I wanted most was to avoid offending the self-advocates. These PEOPLE represent the exclusive club to which I hope my daughter one day gains figurative admittance. These people represent the cream of the autistic crop: Autistic people who FIGHT PASSIONATELY for what they believe in, for their rights, for their due.
Often I don't understand the viewpoints being expressed. I read and reread what's written there. Sometimes there's a spark and I think. . . OKAY, i see what you're talking about! Sometimes I still don't make the connection. Because I don't want to piss anyone off, I sometimes just "listen" to both sides "yell" at each other (how many times did I see the concept "You're not listening to a word I said," expressed in the comments on that blog? That was a trick question. The best answer is "many"). The hypocrisy is that each side used that same argument against the other. Neither noticed the irony.
These are people. They care about you. They care about your children. They can be offended in a way that only people who TRULY care about something or someone can be offended. Tread lightly, be respectful, try to understand each other's perspective. These are people, not data.
I offer you an insight into MY perspective. I'll take the liberty of crossing out one word that changes nothing to MY perspective, but is concentric to others (and needs to be reinserted when attempting to understand that other person's perspective), to allow the insight to apply to both my children.
I am a parent of a
I am a parent. I sometimes say I'm the parent of an autistic child, but the word autistic is irrelevant or at least incomplete because "parent" doesn't just apply to my autistic daughter, it applies to my neurotypical daughter as well. Autistic or not, they are my daughters. I will be offended if you tell me I'm raising my daughter "wrong" (autistic/not autistic) because I have been pulling my hair out, not sleeping at night, worrying, researching, praying and in general doing my level best for the last 10 years (my oldest is 10) to do what's "right". I am passionate about it. I'm sensitive to it. I have a right to be offended that is unrelated to the topic of autism.
Can I avoid using the word "ally"? I want to avoid it. For some reason it's got a negative connotation now in this arena. I am a parent who is sympathetic to the rights of the autistic community. . . how's that? I offer this:
I promise to respect you as a human being
I promise to believe you when you say you are offended.
I promise to try to understand why you were offended, and change my language, or tone to be more respectful or at least less offensive (and even to change my opinion when persuaded, though there will be times I won't, and I hope we can respectfully disagree)
I promise to do my best to support YOUR cause (which is my daughter's cause)
I ask that you understand that your cause is not my only cause, that my cause is not actually "Austim", it is "My children" and that sometimes those causes may align, but that removing "autism" from the table changes nothing. I still want what's "best" for my daughters, and sometimes that has nothing to do with autism or the opinions of the autistic community. I ask that you remember I am a person, and not just some "parent" with an opinion.
This post has gone on way too long, and I'm just going in circles. We're all people. You have every right to be offended. I have every right to be offended. Let me close this rambling with a couple things. I've seen some of my favorite bloggers post similar titles and themes in the wake of the "new" data. I'd love to see a few more. . . hopefully less verbose than I have been. . . People, Not Data posts.
I've been thinking about this post since Wednesday, but saw another of my favorite bloggers bright and early and decided to get it on "paper". I'd like to link you to her page. In fact, I'd love to edit this throughout the day or week or month or whatever and substitute a FACE for the data. Add your blog address in comments if you feel like exchanging your data for a face.
See Jess's post, "Not Just Numbers, People" >>HERE<<. She puts a lovely face on 50% of HER data in that post.
Or >>HERE<< on Dani's post.
Or >>HERE<< on Dawn's post.
Or >>HERE<< on Jen's post.
Or >>HERE<< on Lisa's post.
Or >>HERE<< on Lexi's post.
Or >>HERE<< on Lisa's post. (I totally did not typo. There is more than one LISA!!!)
Or >>HERE<< on Diana's post.
Or >>HERE<< on Alysia's post.
Or >>HERE<< on Lana's post.
Or >>HERE<< on Adriana's post.
Or >>HERE<< on Marj's post.
Or >>HERE<< on Lisa's post. (THREE??)
Here's my (well. . . Lily's) face:
|1:88? Nah. . . 1:10,000,000,000!|