Whose Planet Is It Anyway?

Tuesday, November 10, 2009

Community and Respect

In the military, as Clay describes in the first post of an excellent series on leadership training and respect, officers salute not only other officers but also enlisted personnel. This is not simply because of regulations and tradition, but because the salute signifies mutual respect between people working together toward a common goal. There is, however, a considerable difference between the rote show of respect for the uniform and the more meaningful respect that must be earned throughout the career of the person wearing it.

Applying this point more broadly to groups other than the military, I would say that meaningful participation in a community is not a matter of symbolic representations of group status such as a uniform or document issued to signify a person's membership in the group. Rather, a community and its culture arise from the many ways in which its people work together, communicate about their shared interests and mutual concerns, and show understanding and good will toward one another. When we pay more attention to symbols than we do to the community that they are supposed to represent, we risk losing the true respect and understanding that should be at the center of the community.

This is particularly the case when the identifying symbols are issued by others who are not part of the community, as Mark Stairwalt discusses in a recent article that draws the distinction vividly by means of a retold story involving tribal identification cards issued by the federal government. I won't quote any of that story here because I don't want to spoil it for readers, but I'll say that it has a powerful impact and that it is well worth following the link. The article goes on to make an analogy to the autistic community and the idea that having official diagnostic papers is what makes a person autistic:

…only some of us are “registered Indians.” Rather than a BIA identification card, some autistic bloggers have been reduced to posting a scan of their autism diagnosis, a “note from the doctor” in order to prove that they know whereof they speak. Others are derided and discredited for speaking about autism from the perspective of self-diagnosis. Most of the demand for this sort of “certification” may come from those who do not identify as autistic (at least not openly), but insofar as any of us take such demands seriously, we remain a house divided, by our own hands.



  • "a scan of their autism diagnosis, a “note from the doctor”"

    So, how else are you supposed to prove it via the internet? Post your doctor's phone number so that anyone who has doubts can call him up personally?

    Then someone will probably say,

    "That's not really your doctor: it's a friend of yours posing as your doctor."

    Or something equally stupid.

    People are either going to believe you or they are not.

    And since "autism" will soon be one single diagnostic entity everyone will be able to call themselves "autistic" who has an ASD diagnosis.

    By Blogger Stephanie, at 5:02 PM  

  • @Stephanie Lynn Keil: abfh was posting about bloggers resorting to that due to a social norm of having to prove one's identity as part of a minority group in order to be believed. Bev wrote a post called Are you autistic? to illustrate how the autistic identity of some people is questioned based on beliefs as well as proof.

    By Blogger TheWiredOne, at 6:28 PM  

  • Stephanie wrote:
    "So, how else are you supposed to prove it via the internet?"

    The point is, you don't have to prove it. I've read a lot of your stuff, and I believe you. I condemn that jerk who questioned your Dx and threatened to "expose" you as a fraud. Your efforts to prove anything to Best were not only useless, but an invasion of your privacy. That's "a bridge too far". Reasonable, rational people are much easier to deal with.

    @abfh - Thanks for the plug, glad you like the series so far.

    By Blogger Clay, at 11:25 PM  

  • Good post ABFH.

    I'm just starting to recognize how many times people set up a situation by making a completely wrong assumption about me and I then feel obligated to prove their assumption wrong.

    It's like they dig a virtual hole and expect me to dig my way out. By being accustomed to indulging peoples expectations due to the authoritative way they ask and my lack of confidence, I too often get drawn into playing a game that I'm completely uninterested in and it won't benefit anyone for me to play.

    Like Clay says reasonable rational people wouldn't expect that in the first place.

    By Blogger Ed, at 11:45 PM  

  • Yeah -- personally, while I have an official DX I do not figure that is what makes it okay for me to say things about autistic-spectrum stuff in public. Honestly even if nobody had decided to identify collections of traits and refer to these collections as "autism", the same traits would still exist, and those of us who have them would be experiencing many of the same problems with discrimination, etc. Plenty of developentally disabled/different people got all kinds of horrible crap done to them long before the autism diagnosis (in any of its varied forms) even existed.

    I am not suggesting doing away with the word "autistic" (I find it personally useful in some ways, and I know it's essential for some people to get services, and for me to have gotten some work accommodations, etc.), just noting that when it comes down to it, issues facing autistic people would face us no matter what we were called and how much "proof" we had of it, or whether we were believed by random people on the Internet.

    By Blogger Anne Corwin, at 12:55 AM  

  • It's as loada bollox innit.

    I mean should I include a scan of my passport to prove I am a UK citizen,

    scans of my academic qualifications. (actually I have put a couple on the web not for reasons of proof, but as illustrations to the text)

    My driving licence and insurance.

    The only people who are going to bother about my diagnosis online are insufficiently important for me to worry about that anyway.

    And for me neurodiversity is not a movement or a cult it is an identity and was before any of this blogging BS.

    By Blogger Larry Arnold PhD FRSA, at 5:30 AM  

  • In general I have found that people who obsess over other people's "proofs" of certain things (whether it be diagnosis, national origin, etc.) already have it in their heads that the other people are lying, hiding things, or mis-representing themselves.

    These folks (the ones doing the accusing) also tend to, in my observation, have really obvious double-standards, along the lines of "people who agree with me on X and Y are 'real', and I won't require any proof from them of anything, but people who disagree with me on X and Y are 'fake' and nothing they do will convince me otherwise -- so in the meantime I will just get as much personal information out of them as I can and compel them toward public humiliation if possible because I'm so mad at them".

    Seeing that kind of thing is one of the signs that tells me to stay away from someone and not bother engaging with them. (And no I wasn't born knowing this, it took some very bad experiences, both mine and others', to teach it to me finally, and I didn't really fully learn it until my 20s).

    The more decent-acting people I know do NOT base someone's supposed legitimacy on their opinions, or on nasty rumors about them, or on their willingness (or lack thereof) to try and placate those harassing them.

    I think also that the fear some have that "not sufficiently severely affected" autistic people will "take over" the dialogue and somehow harm "severely affected" people is...kind of misguided.

    The real problem, I think, is the way people tend to get so easily denied necessary services because of stereotypes about disability (e.g., the weird notion that "disabled" means "unable to do ANYTHING", when really disabilities are more specific in a lot of cases, especially for autistic people, who might be MORE skilled than average in one area but have tremendous difficulty in some other area which may be important to daily living, etc.). And THAT is what needs to be fought.

    Shutting up autistic people who have managed to acquire the expressive skills to self-advocate is not going to help things for autistic people with fewer expressive skills -- it's just going to make everything worse for everyone. And demanding to see someone's "pedigree" is definitely a form of shutting people up, or at least derailing the discussion away from anywhere useful. E.g., I am sure the following will look familiar to many:

    Person A: "More employers need to work on reducing workplace discrimination against autistic people. At my last job, I had trouble getting reasonable accommodations even though I was perfectly capable of doing the actual work, because some people thought I was asking for 'special treatment', even though the accommodations I wanted meant I'd be doing MORE work, not less!"

    Person B: "You say you're autistic...where are your diagnostic papers? Who diagnosed you? What was the name of the clinic where you were diagnosed? How old were you at diagnosis?"

    Person A: "That's not the point, I'm trying to discuss workplace discrimination here..."

    Person B: "Oh, so now you're avoiding the question! How can I take you seriously if you hide things?"

    Person A: *headdesk*

    (This is not, of course, to say that credientials and references are never important -- I certainly think it's important for medical doctors to be able to prove they're properly trained, and for restaurants to be able to produce their health-department inspection certificate. But that's a different scenario, one that doesn't generally occur online, for one thing.)

    By Blogger Anne Corwin, at 1:27 PM  

  • @Clay - Best isn't the only one who questions DX's. Cresp does it as well. I'm quite happy to (when I can do it) publish my formal DX once I work out how on my website (with identifying details like addresses and phone numbers blacked out of course).

    Off topic, does anyone know who would know what is happening with Zach Lassiter? That blog of his is getting right out of hand!

    By Anonymous Anonymous, at 4:52 PM  

  • Timelord asked:
    "Off topic, does anyone know who would know what is happening with Zach Lassiter?"

    Okay, so I just called his house, it picked up first ring, but it was only his voice message. No idea where he is.

    Just checked your and David's and alls conversations with the Beast.
    At least, you're keeping him busy. Me, I got better things to do, even if I don't leave my house.

    By Blogger Clay, at 6:39 PM  

  • We know that kids are being given highly questionable diagnoses of AS or other autism-related labels for purely pragmatic reasons. A formal diagnosis proves nothing. Life is not that simple.

    By Blogger Lili Marlene, at 10:30 AM  

  • Very few autistic adults are diagnosed. One study I'm aware of found that 90% of a group of autistic adults located by the study did not have a prior autism diagnosis.

    More than that, I think it would be very difficult and expensive for most autistic adults to get an official diagnosis. That's certainly the case for the vast majority of autistic adults in the world, but even in the developed world that's probably the case.

    By Anonymous Anonymous, at 12:04 PM  

  • Clay, are you able to call the hospital that it was claimed on Zach's blog that he was in? Also, could you call Kalamazoo police and see if they know anything? The OP entry on Zach's blog was on November 7.

    By Anonymous Anonymous, at 5:21 PM  

  • would certainly be good to know what the crack is with Zack, for certain...

    By Blogger David N. Andrews M. Ed., C. P. S. E., at 5:00 PM  

  • Still staying OT here, all I got for my trouble posting on Zach's site was more than 100 emails, none of which I read. Getting back on topic, if a person doesn't want to believe I am autistic, nothing is going to change that person's mind. I would most likely end up not having any more contact with him/her. It's best to "let sleeping dogs lie" and even hide it from yourself that you are autistic. One thing autism bloggers should know is that the non-autistic "real" world knows little and cares almost nothing about autism: a tempest in a teapot...

    By Blogger polyrhythmia, at 2:27 PM  

  • i'm not the closest friend of m. j. carley,so goodness knows,i've nogreat impetus to defend him. however,i do believe that being the parent of someone with a huge[however defined] "problem" condition,etc. is not something to be mocked nor taken lightly.[mind you,i'm not referring to michaels' situation in particlar]. [nor,by the way is this self referential as i am not a parent]. being indiffernt to the stresses of a parent,only serves to alienate and worsen the situation for everyone. baring extreme pathology,such as beating and extraordinary emotional cruelty, there is,i reiterate,no good to be had from demonising parents and not trying to walk in their shoes. austin g

    By Anonymous Anonymous, at 5:44 PM  

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