Follow by Email

Friday, March 30, 2012

People, Not Data


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:
Vax/Antivax
Love Autism/Hate Autism
Awareness/Acceptance
Person first language/um. . . NOT person first language (there's probably a term)
Environment/Genetics (maybe this is a bad example)

In general, both sides seemed to be approaching the topic on that day from a very clinical standpoint.  By that I mean both sides were offending the other remorselessly by failing to see things from any perspective other than their own personal perspective, by failing to respect the feelings of the other side. . . neither side seemed to understand how offensive the other side was being to the other.  It was unilateral.  Unilateral bedside manner failure.  Self advocates were offending parents, and parents were offending self-advocates.  "We" were united by our offensiveness AND our denial of the rights of our "opponents" to be offended.


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 an autistic child.  I want what's best for her.  Sometimes I don't know what that is.  Because there's no handbook on how to raise autistic children "right", I can only try to educate myself on all the various ways and pick what seems best.  Sometimes I struggle with her autistic behaviors.  I look for insight from autistic people who have gone through what she has gone through, or from parents who have raised their own autistic children.  People disagree with what works best, and sometimes I get led astray by misleading facts or easy answers, but the decisions I make, I make because I love my autistic daughter.  I believe the fight to achieve my autistic daughter's rights will be fought by me until she can fight for herself.  I will respect her as a human being.  I will ask to be respected as a human being.


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!
Be nice to each other, goddamnit.









66 comments:

  1. The uniqueness of each of our children often get lost in the world of advocacy. Nice post.

    ReplyDelete
  2. Well said. I was trying to figure out what I thought about the new numbers and so on, and then I realized that at the moment it was probably more important to make breakfast for and talk with the people standing right in front of me. One of which happens to have autism.

    By the way, thanks for the "hi" sent through Karen V. Hope all is well with your family!

    ReplyDelete
    Replies
    1. We're good. Hope you guys are too!

      Delete
  3. I can relate to just about everything you have said. Well done! And yes, we all want what is best for our children...aaaannndd, with that said, here's my blog address...because I'd like to add Tate's face..and let everyone see that he is so.much.more than a number.

    http://www.betweenhopeandahardplace.wordpress.com

    ReplyDelete
    Replies
    1. Nicely put. I especially liked your MY perspective paragraph...funny how one word may change the meaning if we let it.

      As for the statistics...my take 1:88 more like "Priceless" (do I need to give credit to American Express here?!?)

      Link to my People, Not Data blog: http://ouradventureswithriley.blogspot.ca/

      Delete
    2. thanks ladies, I added you both in!

      Delete
  4. Nicely done, Jim. Good thoughts, eloquently expressed, and heartfelt. Can't ask for anything more than that. ;)

    ReplyDelete
  5. Good post. I decided to stay the hell out of this one completely. I'm glad people like you and Jess are writing about it though.

    ReplyDelete
    Replies
    1. It looked scary. I didn't want to fight anyone.

      Delete
  6. Here ya go, my friend

    http://www.iamstilllookingup.com/2012/03/188.html

    The kids (the people) are what matter. We do need to remember that.

    ReplyDelete
  7. And that's just it---play nice and be respectful. I try to stick to, if I can't say what I've written to your face, I probably shouldn't write it....

    ReplyDelete
    Replies
    1. ESPECIALLY when it's important.

      Delete
  8. I think I'm offended by "goddamnit"...

    ReplyDelete
  9. I'm so glad we all get to continue to grow and learn.

    ReplyDelete
  10. "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"

    Well said. Too well said, dammit. You scare me. I don't get all the fighting, either. We should be united in our voice that data is good, but we need real life help. Real life answers.

    www.mosltytruestuff.com

    ReplyDelete
    Replies
    1. If I put bunny ears on would I scare you?

      Delete
    2. It's your cold dead eyes that scare me.

      Delete
    3. Dead eyes? Like a doll's eyes? Cap'n Quint is that you?

      Delete
  11. Can I please be like you when I grow up? You didn't talk in circles, you were quite eloquent, and *humanizing*. Honestly, so many of our polarizing discussions and issues in life (politics, religion, hell, parking spaces) would be different conversations if we could all remember that *most* people are actually trying to do their best *most* of the time. Mean ugly people do exist, but they're fewer and farther between than we'd like to think when we're trying to justify our own sides of whatever battle we're on.

    ReplyDelete
    Replies
    1. y. . . yes? I think I agree that there are very few genuinely mean spirited people. MOST people try doing the right thing for the right reasons even when they're wrong.

      Delete
  12. I was unaware of the new numbers and 1 in 88 is pretty high. And with all the new autism diagnoses, hopefully it will translate into that many more accepting people.

    ReplyDelete
    Replies
    1. You could interpret the increased exposure as a blessing. I'll be more likely to accept someone different than I am if my brother or sister or friend or nephew or whatever is ALSO different.

      Delete
  13. My daughter has spina bifida and is maybe somewhere on the autism spectrum, and I've been surprised to see how contentious things are between the parents and self advocates. In the spina bifida community online the parents and adults don't always see directly eye to eye, but overall everyone plays pretty nicely.

    ReplyDelete
    Replies
    1. Passionate debate from people who care most about the topic doesn't always end on friendly terms, which is ironic when we're all essentially on the same side.

      Delete
  14. I think you're right that we are - essentially- all members of the same family and families fight. We are all passionate and we all love from a different perspective. Respect is key, my friend. Most definitely. And, dang, that Lily is a cutie!

    ReplyDelete
    Replies
    1. families drink too. . .

      and THANK you.

      Delete
  15. Right on, Jim! I think we can accomplish a whole lot more if we stick together, share a voice, and remember the FACES behind the numbers. I posted about this today (or a variation of it) but didn't do the face thing - good reminder.

    ReplyDelete
    Replies
    1. DEEEED IT. Just added a picture to today's blog post since it's already on the subject. Would love to be included in the link...

      Delete
  16. Wow. Well said. The unfortunate thing is that the only people who seem to "see" the faces and not the data are the ones who live with it every day. With 2 out of our 3 children being on the spectrum, 1 in 88 or 1 in 54 isn't really "news" to me.

    Your daughter is beautiful, glad I found your blog! Keep on writing.

    ReplyDelete
  17. I wrote the same thing too. The arguments why don't matter to me. I want to know what we're going to do now to make sure my kids get the services they need and that the world understands my kids.

    I wrote it here at http://trydefyinggravity.wordpress.com/2012/03/29/what-about-now/

    ReplyDelete
    Replies
    1. I added you to the links! Thanks, Alysia!

      Delete
  18. Thank you so much for this post.

    Here is my 1 in 88 and a little thank you to your blog and the other parents who shared their link.\
    http://nzillaloveableanddestructive.blogspot.com/2012/03/1-in-88-people-are-peoplethank-you-jim.html

    ReplyDelete
    Replies
    1. Thanks for the link, Adriana! You've been addified!!

      Delete
  19. Replies
    1. Thank you. . . i. . . I can't come back to your page unless you promise me that Devil Owl is gone. . .

      Delete
  20. Lily is so beautiful!!! I can't wait to go and check out all those other beautiful kids.

    ReplyDelete
    Replies
    1. Thanks, Lisa! I'll add your link. You're using linky tools. I need to understand them better. . . my way seems antiquated.

      Delete
  21. Hey, Jim? You're a pretty damn kickass writer, you know that?

    Loved this. I'm picking you for my corner, if there's ever a rumble. Be ready. It's going to be epic.

    ReplyDelete
    Replies
    1. YAY! Wait. . . the whole point was NOT to pick corners. . .

      Delete
  22. Very well said. I find myself always standing around just "listening" without adding much to these conversations (debates?) because I'm so terrified of offending anyone. I wasn't going to touch any of the latest with a ten-foot pole because I'm, well, I'm pretty much just chicken-poo and I'm not even sure what I believe from one day to the next. But your post has helped me to see that it can be said without being offensive and I so hope we can all just get along. Well done. =)

    ReplyDelete
    Replies
    1. i haven't seen in black and white since I was 20. My shades of gray don't just apply to my beard these days.

      Delete
  23. You know, I come here because I like your writing. I'm at a complete loss when it comes to the particulars of what you're talking about.

    Nevertheless, I like the way your compassion comes out in your writing, whether you're trying to be clinical or analytical.

    I can't help but wonder if everyone might get along better if we all just drank a bit more tea.

    ReplyDelete
  24. I would hug you, but that Viking helmet is pointy. Thank you for this. People are so much more interesting than statistics, which is why I did so horribly in math.

    ReplyDelete
    Replies
    1. you hug weird. My pointy helmet shouldn't even come into play. . .

      Thank you!

      Delete
  25. Amen. Seriously. Amen. One of the best posts I've read in a long time.

    ReplyDelete
  26. Excellent post! We should be nicer to each other. We should seek to understand each other. We're all people. Period. "Tell me how I should feel about almost any topic and I'll tell you I find that offensive EVEN IF I AGREE." Yes, this is me exactly.

    ReplyDelete
  27. I'm in Australia, and the only way I knew about those stats was reading about them in the online Autism community, which I am new to (although we've been journeying with Autism for a few years now). Seems odd to me the amount of fighting that goes on. Even if I was offended I'm too busy raising awareness of how Autism affects this family to find the time/energy to weigh into those kind of fights! I like what you had to say, and I lie your blog! Thanks for speaking so openly!

    ReplyDelete
    Replies
    1. Thanks for reading!

      It IS odd, but understandable too, I suppose, given how important it is to the stakeholders in the fight.

      Delete
  28. Thanks very nice blog!
    Stop by my web page ; borkum riff black cavendish

    ReplyDelete