A Point is Made, Relating to My Good Neighbor, Jim August 12, 2008

This is the post where I make a point relating to my good neighbor, Jim, who has a disability. Do me a favor, particularly if you are a reader who is not familiar with the disability rights movement or the social model of disability: Recall my post about Jim, and think of a few words you would use to describe him. Okay, got a couple of adjectives?

 

Now, let me share two quotes from a forum. The person posting works in the prison system. Understand, she is not a bad person. She is a funny, snarky person who feels that she is doing a service to society through her work as a corrections officer, and she does, in fact, stand up for inmates’ rights if she sees them violated. Whether or not you agree with the US prisons system, she is an individual who believes in herself and her work, and she is a good person. These quotes do not reflect a complete person. They reflect a use of language by her, a person whom I like, that, in my opinion, was hurtful and shocking.

 

In the first, an excerpt from a transcribed conversation, the context is that an inmate has just endangered himself by doing something very reckless. “Me” is the person who posted this; “IM” is the inmate.

 

ME: Mr [Retard].
IM: Yeah.
ME: If you ever do that again, I will write you so many DR’s your children will do Seg time.

 

In the second quote, some inmates have been misbehaving by shooting spitballs.

 

The 2 cells I suspected were in the corner, so I watched them out of the corner of my eye. I asked the Porter (cellhouse janitor) if he’d noticed any retards throwing spitwads lately, and he said no, but he was tired of cleaning them up.

 

Would she– we’ll call her Sue– ever hurt my feelings, or the feelings of a person with a disability, intentionally? I don’t think so. I also don’t think she is aware that her words were hurtful. The forum I quoted these things from does not allow members to call other members out on their language.

 

The moderators require one to use a “report” button to report a post that is offensive. The moderators then make a decision amongst themselves about the complaint. I’ve reported similar posts for use of language in the past, and the decision has been that they will not take any stand against this word. In addition, I’m told that I’ll get an “infraction” for frivolously using the report button if I continue to report hurtful use of this word.

 

So, I can’t ask Sue if she would use that word to describe my neighbor. I can’t ask her if she would use that word within earshot of my friendly, gentlemanly neighbor, Jim. I can’t ask her if she understands that it’s a near-certainty that, at some point in his life, Jim has heard that word applied to him in a hurtful way.

 

That’s why I’m talking about it here, and why I asked you to think of a few words that describe Jim.

 

I think the point is made.

A Good Neighbor August 12, 2008

There’s a gentleman who lives in the apartments next door. I say gentleman not only because it’s the most polite way to refer to a person of the male gender, but also because my neighbor has never been anything but a gentleman. He never forgets a “please,” or a “thank you,” and even though I’m probably about half his age, he calls me, “Ma’am.” His first name is a common one, but I’ll change it anyway: We’ll call him Jim.

 

Jim has a disability. I’m not sure, exactly, which diagnosis he carries. He’s in his forties, so chances are as a child he was given some catch-all label like “mildly brain damaged,” or, though I hate to type this out, “retarded.” He speaks very slowly and walks with an unusual gait. Jim has a little bit of an accent similar to that which comes with Down’s Syndrome, but not quite the same. He converses using short words, and I find that he understands me best if I do the same. Jim has a job and takes the bus to work. He likes my dog, and my dog likes him quite a lot.

 

The first time I met Jim, he was on his way to the bus stop. My dog and I were in my front yard. I’d seen Jim around before, and waved to him a couple times, but we’d never had a conversation. But this time, my dog saw him too. Augustin– who knows where the boundaries of the yard are and obeys them– rushed straight into the street to greet Jim. I retrieved the dog with many apologies, rushed him inside for a time-out, and had a brief conversation with Jim. Since then, Augustin has behaved himself in the front yard, but he still greets Jim every chance he gets.

 

Anyone my dog likes is automatically on my good side. I’ve noticed the pooch has fairly good judgment. For example, he recently barked at the teenagers carrying beer who walked by the house at night, but not at a nurse walking home with her daughter. But this post isn’t about my dog’s common sense. It’s about my good neighbor, Jim, who always has time to compliment me on my dog’s behavior.

 

He asks, as Augustin gleefully whines and licks his hand before rolling over for a belly rub, “How do you get him to be so friendly? I know some people make their dogs real mean, but he’s not mean at all. He’s so friendly.”

 

I explain that Augustin has always been that way, and point out as a stranger approaches, that Augustin stiffens and barks. “He knows the difference between friends and strangers, but he only barks at people if it is after dark.” This impresses Jim, and causes him to erupt into another string of compliments.

 

That’s my good neighbor, Jim, and that’s all I’ll say about him in this post. In my next post, we’ll talk about Jim again; but I have a point to make, and it doesn’t have a place in this post. This post is about Jim, who is my neighbor, and a gentleman.

My First Concert, and More NT-ocracy July 31, 2008

First Concert

So, I went to my first-ever concert on Tuesday. Yeah, first-ever. Seriously. I made it to adulthood without ever taking in a concert. Well, except for Anti-Prom (the goth/punk alternative to prom, which I attended instead) where a few local bands played– but a real concert with a touring band? My first one. I saw The Faint at The Ogden.

 

It was pretty awesome. I went with my SO and some friends of his. Waiting for the concert to start was a little awkward, since the specific friends he brought (with the exception of my roomie) were not people with whom I’m at all close; three of five are people I actively don’t like. But, once the opening bands (which were terrible) started to play, we were all united in horror at how much they stunk, and then when The Faint came on, nobody noticed anything except how great they were.

 

I got there early and we were up front by the railing that separates what apparently is a mosh pit for most shows from the regular concert viewing area, so as soon as The Faint took the stage, others were trying to push me out of my spot. One drunk Australian guy made me laugh, so I moved over and let him in, but then everyone else started pushing and shoving. I held my ground, and one girl started pushing and hitting me– it wasn’t until after the concert that I (having not taken my eyes off the band pretty much the entire time) was informed that the “mosh pit” got ignored and all the moshers were beating on each other right behind our group. I was totally oblivious and pretty confused about why everyone was pushing me!

 

Oh, and I danced, and headbanged (yeah, to The Faint, sue me), which is kinda big for me because I’m pretty self-conscious about being tone-deaf and a pretty bad dancer. But hey, that drunk girl next to me was dancing and intentionally knocking into me every couple beats, and I wasn’t about to let that slide without giving as good as I got… okay, so maybe technically I moshed a little? I’m not sure if that counts.

 

Anyway, yesterday morning (Wednesday) I was pretty bruised and sore, but I’d do it again for sure. If you get the chance to see The Faint live (and concerts are something you do and like), go for it. Todd Fink– formerly Todd Baeschle– is the lead singer, and his costume for this tour is a mad scientist’s outfit, with a lab coat and goggles, and he plays the part the whole time he’s singing, leaping and spinning around the stage, jumping on the amps, waving the microphone stand wildly…

 

Oh, and I’m thinking of taking a boxing class now. It actually was pretty cathartic when I was struggling with the crowd trying to push me out of my spot, and I think maybe boxing or martial arts would do the same thing for me.

 

I have a picture of myself with totally overdone makeup for the show here somewhere; didn’t get any pictures of my whole outfit, unfortunately, since they wouldn’t let anyone bring a camera in. So a Myspace-esque photo I took myself will have to do, when I upload and post it. I usually don’t wear any makeup at all, so it might be a little strange to see me wearing a ton of foundation, blush, lip gloss, eyeshadow, and mascara. I still can’t figure eyeliner out, though. What the heck are you supposed to do with it?

 

NT-Ocracy and Forums, Pt. 2

 

I was again scolded on a forum, for something else this time, which I imagine is an extremely problematic automatic characterization for anyone not neurotypical (see “Autism Threshold” post for my and others’ speculation on why I identify as NT, but seem to fall into a lot of the same social traps, particularly online, as my Aspie/Autie/etc. friends).

 

So, I ran afoul of the mods on the same forum mentioned in the NT-Ocracy post again. Their grievance this time? I was “lecturing people.” The subject was the term “bull dyke.” A member used it, another member called him out and characterized the phrase as a “homophobic slur,” and a couple of members responded that the moderators probably were not taking a position because nobody had reported the thread to them yet. So, I posted saying that, to avert further conflict, I was using the report button to report the thread to the mods, and taking a brief stance on the term at issue. For those interested, my stance was that there’s a pretty big difference between a person describing herself that way, versus (as the person who made the original post used the term) describing someone whose actions you found objectionable with that term; in other words, using it as an insult.

 

Then I get a textual tongue-lashing by private message from a moderator, with something along the lines of “Maybe this will FINALLY get the point across to stop lecturing people!”

 

Finally? Did I miss something? I haven’t been told that taking a position on an issue under debate is considered “lecturing” in the past.

 

The moderator in question just lost a loved one and is grieving and recently posted about how much depression and grief changed her life and personality, so I’m not going to respond the way I’d like to– I just deleted the private message, and I’ll tread more carefully for a while. I’d leave the forum, but there are many people there I like and care about, yes, including many people on the Autism spectrum. However, there’s no real appropriate way to broach the topic of “Do you feel discriminated against here because of the way you communicate?” without violating forum rules, so I don’t know if they have encountered the same problems, but if I push the mods’ buttons, I’m betting most of the Aspie/ASD/Autie users have done so in the past and been similarly confused about what, exactly, the problem is.

 

I’d be willing to bet that the exact same scolding has been given to a few of these members, really; I’ve noticed that many folks on the Autism spectrum (spectra?) have an area of expertise and are more than willing to share knowledge and opinions about that subject. I guess that could be called “lecturing” when one is not open to receiving knowledge and opinions from others on a particular subject; perhaps that’s where I missed a warning to “stop lecturing?” My area of expertise is pet care and training, and I’m frequently called out in threads about animals– “Oh, Saydrah, this one’s for you!” So I would not have ever imagined that, since my advice is frequently requested, it is unwelcome and perceived as lecturing. However, that’s the only thing I can really think of that might have grated on somebody’s nerves in the past and led the moderator to consider me a habitual lecturer.

 

Thoughts?

Is There an “Autism Threshold?” July 15, 2008

Shiva mentioned recently that zhe thought from my photos on my blog that I was a person on the Autism spectrum until reading a post in which I identified myself as neurotypical. This got me thinking (and taking up space in Shiva’s comments section– sorry!) about the behaviors and opinions of mine which are similar to those of people on the Autism spectrum, as well as the question of “diagnosing” Autism/Asperger’s/ASD in general: Specifically, where’s the point at which the benefits of a diagnosis, such as accomodations in school or benefits from insurance companies, are sufficient to justify gathering a set of behaviors together and calling them Autism/Aspergers/ASD? Is there an Autism threshold? Where does the spectrum change from the Autism spectrum to the NT spectrum, one end of which potentially adjoins the Autism spectrum?

 

Certainly, some people are easily identifiable even by neurotypical people as Autistic. Others are “passing” as neurotypical but are often recognized by others on the spectrum. Then, there are people who just seem to surprise others with their behavior, but who most NT people pass over as “weird,” rather than the lightbulb going on that says, “autistic.”

 

As Amanda Baggs said *link is to Google cache because her site is down temporarily,* “We’re (Autistic people are) the person who everyone calls “retarded” who suddenly comes out with things that seem very intelligent, and the person everyone calls a “genius” who can’t do some really simple stuff.”

 

But then you have the NT people who do Autistic-like things, but who are never given an autism-spectrum label. For example, stimming. I’ve heard in various places that 10%, 25%, half, or nearly all NTs stim to some degree, but that NT stims just happen to be more socially acceptable. I found an NT blogger with an Aspie partner who puts it well: “NT stims tend to increase with greater anxiety, discomfort, or boredom. Though most are ’socially acceptable’ in their style, they can become socially unacceptable if done to excess, because they are distracting and signal discomfort.” NT stims include tapping, leg bobbing, chair rocking, hair twirling, zit popping, head scratching, shifting weight side to side… all sorts of things that NTs see as normal, and which are normal, but the jump is rarely made from “My neurotypical stims are normal,” to, “Autistic stims are normal; they’re more obvious, and sometimes self-injurious, but they’re normal.”

 

I also think that NT stimming differs from Autistic stimming largely in that NTs are more able to inhibit stims– some of the typical Autie stims like rocking or hand flapping are just as appealing to small NT children as small Autistic children, but NTs develop a greater capacity for identifying situations in which these stims won’t be perceived as acceptable. For example, an NT person who stims by staring at fan blades might do so while waiting for an entree at a restaurant by herself, but not during a business meeting with 20 corporate suits. A stim that’s rarely, if ever, socially acceptable might be suppressed entirely: For example, headbanging. Or, an NT person who likes to headbang might channel it into doing so at concerts where that behavior is expected.

 

Another behavior typically associated with autism, but frequently seen in NTs, is avoidance of eye contact. Many NTs avoid eye contact but don’t associate that avoidance with the autism spectrum. “I’m shy,” or, “I just don’t like to make eye contact with people I don’t know well,” are frequently-used explanations for the avoidance of eye contact by an NT. I think Shiva perceived me as autistic from my photos because I avoid “eye contact” with cameras instinctively unless I’m thinking very consciously about looking right into the camera lens. That results in my looking down in a lot of my photos, or looking up in some– usually, the weirdest photos of me are the ones where someone said “Chin up!” and I tipped my chin up, but my eyes followed it up, and I end up looking over the camera. When a person looks at a photo of another person, the viewer’s eyes are in the place of the camera lens, and one perceives a photo of someone looking away from the lens as a photo of a person avoiding eye contact with the viewer.

 

My posture and positioning in photographs may also appear autistic; however, I’m not familiar enough with the body movements typical of autism/Aspergers/ASD to explain that one. I do trend away from posing facing my body straight toward the camera for photographs, but I think that has more to do with a long history of hearing about my thighs and hips being larger than average than anything. You can see from my photos that I’m of average weight, but I have a pear-shaped figure like my mother’s, and “affectionate” (read: needling) comments from my father about her legs and behind affected my own perception of my body shape. Then there’s the acting classes– “Hollywood stars stand at a thirty degree angle for red carpet photographs, with one leg in front of the other, because that angle is slimming.”

 

So, back to my initial question– when is a collection of behaviors associated with Autism sufficient to warrant a label or diagnosis? My initial impulse is to say, “When those behaviors impair the person’s ability to participate in NT-dominated society,” but that’s pretty subjective also. I don’t think I should have a diagnosis– I think I’m just one of many neurotypicals who don’t suppress Autism-like behaviors as readily as most, and that my bookwormness has sort of a chicken and the egg relationship with my social awkwardness. But have I benefited from the Autie/Aspie/ASD blogosphere and community? Sure. So, maybe someone who isn’t impaired significantly could still benefit from being assigned a label if it comes with encouragement to explore that community and culture. So, maybe, “When that person finds a sense of community and acceptance among autistics/aspies that they do not feel in communities of neurotypicals.”

 

It’s not an easy line to draw, and I wonder if perhaps the difficulty of making that determination is responsible for the enormous numbers of self-diagnosed Aspies roaming the internet, who identify as Aspies but haven’t ever seen any type of professional to confirm that label. I don’t know that professionals are really more qualified to diagnose Asperger’s Syndrome than other Aspies, since the Aspie-dar some people have (like Shiva) is sensitive enough to detect commonality even in people who identify as NT but who fall slightly closer to Aspergers/Autism than average for NTs.

 

Stigma comes with a diagnosis, but so does self-awareness and the availability of community support and community-based learning. So, where’s the line? When should a parent refer hir child for a possible autism-spectrum label? When should an adult self-label or see a professional to talk about the possibility of an autism-spectrum diagnosis?

 

Here’s a rough, graphical representation of how I see the Autism spectrum, the NT spectrum, the connection between the two, and me. I realize this is most certainly flawed and may well reveal some of my own unconscious biases, but I’d appreciate if others would share their thoughts on how they perceive the differences and similarities between self-identifying NTs and self-identifying Autie/Aspie/ASD people.

 

Please click to access the full image; wordpress cuts it off and shrinking it loses the text.

Autie/NT spectrum and the bell curve of neurodiversity; visual description below.

 

Visual Description: A red line representing the Autistic spectrum connects to a blue line representing the neurotypical spectrum. Below, a purple line draws a rough bell curve showing the most people toward the center of the NT spectrum. An X representing me is about one-fifth of the way toward the right on the NT spectrum. Toward the far right is “very social and extroverted, no autism-like traits” and to the far left on the Autistic spectrum is “Autism affecting mental age and social interaction, LFA label, most or all traits associated with autism.”

ADAPT March Followup– pics, video, and a media rant. July 9, 2008

Adapt Gathering in Civic Center Park

 

 I promised you pictures and video from ADAPT’s march commemorating the Gang of 19’s bus sit-ins in Denver, and there’s one– but before I share others, I need to rant. See how, if you look closely at the above picture, the silver building says “The Denver Post?” You know, the building right behind the park where the ADAPT group is gathering, with many windows overlooking the park? Now, notice the large group of wheelchair users, and you’ll see from other pictures that there were around 50 people listening to someone speak over a loudspeaker system in front of an enormous ADAPT banner.

 

Now, would you think that someone from the Denver Post might, perhaps, notice this scene unfolding, and come write a story? I know ADAPT sent a press release around (I got a press release myself, so I’d imagine the Post did). I know the park is visible from those windows. I know, as a writer, I would welcome a group of people wanting to make my job easier by holding a story-worthy event right outside my office window.

 

So why the hell was I the only member of the media present?!

I’ll be writing a letter to the Editor of the Denver Post to this effect. It’s really frustrating to see things like this happen, then open the newspaper and find, on any given day, at least one example of bad disability journalism full of “inspires” and “despites.”

 

Anyway, on to the positive stuff: Photos and video from ADAPT’s fabulous event. First, my favorite video from the day:

 

Visual Description: The video shows a procession marching along the sidewalk. Many participants are using wheelchairs. Others walk, with or without assistive devices, and some users of manual wheelchairs are being pushed by able-bodied people. At the end of the video, a little boy runs toward the camera to catch up with the march.

 

And some more pictures (plus a bigger version of the first one), with descriptions:

Adapt Gathering in Civic Center Park

Dawn Russell and another ADAPT activist under banner.

Dawn Russell Speaks

Marcher with Flag

Crossing the Street

Arrival at Atlantis/ADAPT

Click each thumbnail for a larger image and a description of the photo.

 

Again, I had a great time– and congrats to ADAPT on 30 years of Denver activism!

ADAPT Celebrates 30th Anniversary of Bus Sit-ins July 5, 2008

Went to ADAPT’s 30 year celebration of the RTD sit-ins. Was awesome. Exhausted now from walking about 20 city blocks and then back again, but will post photos and video later. Had a great time– and I think I met a couple members of the Gang of 19. I’m not 100% sure (nobody seemed to want to brag) but someone told me later that some of the original 19 were there.

 

The other surprise of the day was seeing a high school classmate and her brothers along on the march. Last time I saw “Wren” (name changed for the blog) I remember being terribly envious of her mile-long legs, height near six feet, and how easily she makes friends. I hadn’t seen her since graduation, though I’ve run into her brothers occasionally, most recently at PrideFest. I don’t know her well, but when we graduated, she was pretty tight with some friends-of-friends of mine. Most of them still hang out, and some of the group even moved in together, but now that I think about it, I haven’t heard anything about Wren since graduation.

 

So, it was a bit of a surprise to see her brothers pushing her in a manual wheelchair at the ADAPT march today. Firstly because I didn’t know she had acquired a disability in the few years since I last talked to her, but secondly (and more surprisingly) because, to be honest, I remember her brothers as the type who’d be “too cool” to go march with 30 people in powerchairs, and not at all interested in disability advocacy.

 

One of the first memories I have of her middle brother, who I’ve known (not closely) since middle school, is of him stuffing a boy with Asperger’s in a trashcan and laughing, calling him names. I knew he’d grown up some since then, but the last I heard, his ambition in life was to be a transient street performer of some sort.

 

People change. Today, the same middle brother who used to make that Aspie kid’s life a living hell, as well as the older brother who I thought would be somewhere on the other side of the country in grad school about this time, helped a woman back into her wheelchair after a fall on the pavement that caused her to badly scrape a knee. Then the middle brother pushed her for the rest of the walk, as she was tired and shaken up by the fall, and made sure she got safely inside the Atlantis ADAPT building. The older brother, meanwhile, stuck by Wren the whole way.

 

People change. Thinking about it, I guess I changed, too. That same Aspie kid from middle school– I was pretty hard on him myself. I liked him and wanted to be his friend, but I couldn’t understand some things he did, like following me all over school every day, or provoking bullies instead of avoiding them as I would have done. The bullies started targeting me, too, for being friends with the Aspie kid. So, eventually, I stopped trying to be his friend, and told him off pretty harshly for calling another of my close friends “fat and gross.” Shortly thereafter, he transferred schools, and from what I hear, did very well in a more structured environment.

 

I looked him up a couple years ago to apologize, and I talk to him online sometimes these days, and when I found out he was back in town after college, we grabbed dinner together and caught up with each other’s lives. He’s interested in atheism and Libertarian politics, and studied film in college. I still don’t understand some of the ways he communicates, but I’d say he’s, at least in a very casual way, a friend again.

 

People change.

Technical Difficulties July 2, 2008

Working in online media is never boring. Sometimes confusing, often hectic, but never boring. I really, genuinely, love my job. However, a few technical errors can really make your day more difficult. Recent conversation (names changed to protect the guilty):

 

IT: “Saydrah….”

 

Me: “What?”

 

It: “Can you do us a favor?”

 

Me: “Did I break the website again?”

 

IT: “No, but maybe you could fix the website.” (Instructs me to perform a very simple task using my Disaboom account)

 

Me: “Um… I can’t access My Disaboom.”

 

IT: “Use Control Panel.”

 

Me: “Control Panel gives me an error.”

 

IT: (much harrumphing, some pacing)

 

Time passes.

 

IT: “Saydrah, could you show Cool CoWorker how to delete her photo gallery from the website?”

 

Me: “Sure.”

 

Other IT: “You know, she might need to be able to access My Disaboom for that.”

 

IT: (rinse and repeat harrumphing and pacing)

 

Me: *le sigh*

 

This is a fairly accurate summary of most of my day. See: Why I am blogging on WordPress, rather than working.

 

However, I think I have discovered what IT is really doing at work! (Link goes to a hilarious 10 minute video. Sorry, not captioned, and there seems to be no way I can find to rip it and put it on one of the free sites that lets you caption. So, for a summary, scroll down to the end of this post.)

 

So, yeah, now I need to think of something to fill up the next couple paragraphs, so folks who don’t want to see the plot summary have time to avert their eyes. Some random thoughts:

 

I have a feeling Nutro dog food will experience another recall soon. Have heard some murmurings from friends who work for the company. If you feed that brand, be cautious. Blue Buffalo and Canidae are both good brands to switch to in advance of a recall, if you’re worried.

 

Jerry Lewis does NOT deserve any Congressional Gold Medals. However, I suppose medals have been given in the past to people even more despicable. Not that this is any sort of an excuse. Merely an observation.

 

God I hope Barack pulls his head out of his rear and votes against FISA if telcom immunity isn’t stripped from the bill… I’ll vote for him regardless, but I am seriously considering reducing my consumption of cool photoshopped Obama pictures! I may even retract my assertion that Michelle deserves to become the next First Lady Fashion Icon (a la Jackie O.)

 

I wish the clouds would decide whether or not to deposit rain on my lawn, so that I can decide whether or not to water.

 

There’s a parade commemorating the 30th Anniversary of ADAPT’s bus blockades in Denver this weekend. I’m hoping I can go. If I do, I’ll take a camera and post photos here.

 

Okay, is that enough space?

 

Video Summary:

 

An IT professional is playing Halo online instead of working. Zhe (the voice could be female or male) receives a phone call from someone saying that “the website is down.” IT professional checks the website. It is not down. Zhe questions the annoyed caller and discovers that the website isn’t down; the caller’s internet connection is down. The caller demands that the server be rebooted anyway. IT professional instructs someone else to reboot the server and goes back to playing Halo.

 

Another call comes in, from a different person, whose website actually IS down. IT person, tabbing back and forth between Halo and investigating the problem, discovers that the server has been rebooted improperly. IT person calls back the first caller and tells them that the server now won’t come up because the first caller made the IT person reset it the wrong way.

 

IT person calls a third person, who apparently is the person who actually physically rebooted the server. IT person uses remote desktop to access the third person– Chip’s– computer, where zhe discovers an… interesting arrangement of icons. She fixes it, Chip demands that she change it back because now he can’t find his icons, and finally she ends up changing his background to a screenshot of the icons in their unique arrangement. Which, of course means Chip can’t click anything, but he is happy so long as he has what he thinks is the right arrangement back.

 

IT person proceeds to fix the server, and goes back to playing Halo.

 

I think this summary includes all relevant audio.

Forum Politics and the NT-ocracy (rant) June 28, 2008

Please forgive a brief (okay, I’m lying, it’s long) rant.

 

I like forums. Forums are a way to interact socially with a much larger number and more diverse group of people than I would normally see in real life. They’re also a source to get and give information, meet people with common interests, and discover interesting news I wouldn’t find elsewhere.

 

However.

 

(Rants always include a however)

 

There is something that, lately, has been grinding my gears about one forum in particular. I won’t name it or the administrator, since it’s not so much a problem with that forum as with the concept of forums in general, particularly large ones with many moderators. This forum is generally a very pleasant one, and the community, though united by a common interest, is very diverse in all aspects: Ethnicity, gender, neurology, body shape, political views, sexuality, everything.

 

However, the moderating body lacks diversity in one important aspect. There are, I believe, three female moderators, and five or six males. Most are older adults, and very nice people; one I know is younger, and a bit hot-headed, but generally friendly. One of the moderators is a person with a physical disability. However, though I’ve counted several members with Aspergers, Autism, ASD, ADHD, ADD, and other developmental disabilities, none of the moderators is a person on the Autism spectrum.

 

A conflict with the moderators on this forum has made me realize that this particular flaw in the moderation structure could be very problematic for members who aren’t neurotypical. 

 

A member much beloved by the community had to make the decision to take a loved one off life support. In a post expressing my sympathies, I complimented the strength of their relationship because they had discussed this possibility prior to his sudden illness– Every couple should be so lucky and so smart as to know exactly what each person would want in the event of such a tragedy. Many nasty battles are fought over this decision, in hospital rooms and courtrooms, because a person’s wishes weren’t communicated or put in writing. If anything good can be taken from such a heart-wrenching decision, in this case, it’s that she will never have to wonder whether or not she did what her loved one would have wanted.

 

Shortly after making my post, I was chastised by a moderator, who removed my compliment and told me it sounded like I was lecturing her and the rest of the forum, and that she didn’t need that right now. Apparently, to him– not to her, as she hadn’t even seen the post– my compliment on the strength of their relationship was ”preachy.”

 

????

 

Huh?

 

I didn’t respond to the condescending message that notified me my post had been edited– I know many of the moderators are still skeeved off about an old R-word argument, and if I want to keep my friendships with more open-minded folks on the forum intact, I have to pick my battles. But this did get me thinking.

 

How often do people on the Autism Spectrum get told they’re “interacting inappropriately with others?” In my (limited) experience, one of the most common ways for a rift between an NT and an Aspie to happen is a compliment from the Aspie considered inappropriate or rude by the NT. That’s even tip #3 on LastCrazyHorn’s list of Social Tips for Aspies– From an Aspie:

 

“Find things about people that you like and complement them on it. But stay away from the really strange remarks like, ‘Oh, I love the way your shoes match your nose hairs.’ Not good. In fact, don’t mention hair at all–except that which is either on the face of men or on the top of the head for men and women.”

 

So, if, being an NT myself, I can deeply offend another NT with a compliment that I still can’t see the problem with, how hard must it be for someone with an ASD to give compliments within the NT-ocracy? An Aspie on the panel of moderators could stick up for non-NT members by noticing what “transgressions” could in fact simply be communication that differs from the expected norm.

 

Then there’s a double whammy– many of my friends who are on the spectrum have more internet friends than in-person friends. There are obvious advantages: No eye contact, no need to explain stimming to each new friend, and the chance to wait a few minutes and look again at something you’re about to say before you say it, for starters. I appreciate the advantages of online friendship greatly as well. I can have a deep conversation with an online friend while brushing my dog, blogging, and browsing Reddit all at once, which I certainly couldn’t do in person without causing offense.

 

However, what happens if you communicate in the way that comes naturally to you, it offends someone who doesn’t communicate that way, and they have the power to cut you off from a major social network in your life?

 

That’s when the NT-ocracy in an online community turns from annoying and sometimes offensive to truly discriminatory. Rules that depend upon the subjective evaluation of a person’s behavior or communication patterns are nearly always biased toward the middle of the bell curve, and that means a moderation team composed entirely of NT people isn’t likely to notice that the communication pattern they’re subjectively judging is that of someone with an ASD, not someone who is being rude or who typed before thinking.

 

And then– as Amanda Baggs points out– if someone tries to defend herself by explaining that people on the Autism spectrum don’t always communicate just like NTs do, she’s told, “You’re just using that as an excuse for poor social skills.” From Amanda’s post:

 

“I have noticed a trend online, which is for people to say to others, ‘You are not autistic/AS, you are just using that as an excuse for poor social skills or an excuse to be a jerk.’ I have an online friend who frequently gets this reaction, when she says something she considers just direct and someone else finds it insulting and flames her, and she tries to explain, only to get that response. Indeed, things like ‘Asperger’s is just an excuse to be socially inept’ or ‘people who use Asperger’s as an excuse’ have become givens in some parts of the Internet community. It is even accepted (with little to no apparent evidence) by some autistic people as fact.”

 

Is there a word for someone who, through ignorance and prejudice, separates a person with a disability from a valued network of friends for being direct, but being perceived as insulting, as a result of that disability?

 

Of course, that’s not to say that people on the spectrum don’t have friends they chat with face to face. However, I queried an Aspie friend while writing this about how he’d feel if he were banned from one large online community where he spends many hours each week, and his response was, “Angry. Devastated. Lonely.“

 

Is there a word for someone who, because of their own biases against a particular style of communication, makes someone feel angry, devastated, and lonely?

 

It happens constantly in online communities. In fact, in my younger (early teen) years, I bought the “Aspergers isn’t real, it’s just an excuse for poor social skills” bit hook, line, and sinker.

 

It didn’t help that someone with Aspergers was, at the time, an authority figure online who was grating on my nerves and the nerves of several others, and that the others annoyed with that individual saw no problem with suggesting that, “If you can’t communicate better, you should hire someone who can to handle customer service for your business,” or, “If you can’t deal with people better, you should find a different job,” or even a variant of the old line: “Asperger’s is just your excuse to be a tyrant.” I was pissed off enough at her not to bother trying to find out anything about Aspergers besides that it was a condition some people on the internet say they have, but some other people on the internet say it’s just an excuse to be a jerk.

 

So, yes, for a while, I was that person who doesn’t see the difference between an explanation and an excuse. And I have moderated forums where someone who identified him or herself as an Aspie was eventually banned from the community after offending other members. And I didn’t speak up. I didn’t push that button, but I didn’t speak up.

 

I can’t speak for people on the Autism spectrum. As Bev illustrated in square talk, it’s ridiculous and presumptive for an NT to even attempt to do so.

 

But I can speak to neurotypical people in a position of authority in online communities: Don’t buy the “Excuse to a be a jerk” crap. Before you cut someone off from their online friends for offending someone, try running a synopsis of the incident by someone you trust who has an ASD. Better yet, especially in large communities, appoint a moderator or several who’s on the Autism spectrum.

 

And I can speak to the Autistic community, to ask questions:

 

How can online communities be more inclusive?

 

How can a website where people congregate handle a situation in which a member with an ASD offends others by communicating in a certain way?

 

What measures can be taken to stop online communities’ moderation policies from becoming, “You must communicate like us,” and turn them into, “We welcome people who communicate like you?”

RE: Politically Correct Methods of Addressing the Able-Bodied June 27, 2008

ATTN: All Team Members
FROM: Timothy Q. Snorfleblark, Director of Human Resources
RE: Politically Correct Methods of Addressing the Able-Bodied

 

Team,

 

It has come to our attention that certain persons in this office have shown a marked lack of sensitivity in addressing able-bodied team members. Several complaints have been filed with Human Resources, forcing us to take action. The offending individuals have been warned, but insensitivity toward the able-bodied seems to be a company-wide problem. As a result, Human Resources has put together a simple guide to appropriate methods of addressing the able-bodied. Please read in full, and, when in doubt, consult Human Resources before doing or saying anything you feel could potentially be offensive.

 

Sincerely,
Timothy Q. Snorfleblark
Director, Human Resources
ACME Mega-Corp

 

ATTACHMENT: “ablebodiedsensitivity.doc”

 

Use of Appropriate Language

 

Using appropriate language in the workplace is essential to maintaining a harmonious work environment. All coworkers deserve to feel safe and accepted at work, regardless of their disability or lack thereof.

 

In order to avoid causing discomfort to able-bodied team members, please refrain from using terms like “social model of disability,” or “crip culture” at work. It is considered rude by the able-bodied community to create confusion and challenge preconceptions by asserting that people with disabilities do not want to be cured of their conditions.

 

In the same vein, calling coworkers “curebies” is also inappropriate, particularly as a reaction to the expression of a charitable sentiment or a request for donations to a worthy cause.

 

“Crip fashion” is also a term politically incorrect for usage in the presence of the able bodied. The able-bodied consider this term inaccurate and offensive. It is very impolite to insinuate in front of able-bodied team members that team members with disabilities are concerned with beauty, dating, and sex. As discussed above, this causes confusion and discomfort. Please be considerate of others.

 

When referring to your disability in the presence of able-bodied team members, do not call yourself a “crip,” “gimp,” “amp,” or any other term that could be associated with language reclamation. Many able-bodied persons suffer from a fear of change. In order to make your coworkers’ selection of appropriate verbage easy, refer to yourself as a “person with a disability,” if you must refer to your disability at all.

 

Making Conversation with the Able-Bodied

 

When conversing with able-bodied coworkers, remember that their condition may prevent them from understanding certain types of humor or relating to certain topics of conversation. Please do not discuss bodily fluids, catheters, colostomy bags, or assisted showering and toileting. It is considered polite within the able-bodied community to limit discussion of disability to positive and uplifting topics.

 

In order to converse politely with the able-bodied, try mentioning an exciting hobby like tennis or swimming. Make sure to emphasize how you’ve overcome your disability in order to compete or participate in this hobby. The able-bodied person may tell you that you are “an inspiration.” This is a compliment; please accept it graciously. Some people who are able-bodied may even be moved to tears by your courage. Again, this is to be considered a compliment.

 

Some able-bodied team members may make conversation by pointing out to you news stories about disabled persons, or by asking if you know another person with the same disability. This reflects the depth of their caring and an effort to reach out to you. Laughter is not an appopriate response to such a query. Nor is it polite to call an article brought to your attention by a coworker, “stunningly bad disability journalism, typical of the New York Times.”

 

If in doubt, limit topics of conversations to sports, crafts, and the weather. Discussing sex, health, politics, dating, friendship, work, or, worst of all, protests and activism, with able-bodied coworkers may contradict existing prejudices and offend a team member.

 

Meetings and Office Parties

 

Appropriate behavior during workplace gatherings is just as important as appropriate behavior during one-on-one interactions. Please do not scold coworkers for assisting you at office functions by preparing your food, pushing your wheelchair to an appropriate location within the room, or ordering for you at group lunches. It is important to allow the able-bodied to keep their sense of autonomy and control intact despite the presence of disabled persons within the organization. Thank able-bodied coworkers for friendly gestures such as those listed above, in order to help preserve their self-image as charitable and inclusive individuals.

 

Complaining about accessibility at office functions is frowned upon. Providing ASL interpreters, for example, might take away from the positive experience of others during parties. You wouldn’t want to be seen as selfish, would you? The same goes for requesting that team-building exercises be conducted at fully wheelchair-accessible facilities. The able-bodied community loves paintball and ropes courses, and it would detract from their enjoyment of these delightful activities if a disabled person were to come along and repeatedly emphasize his or her inability to participate.

 

In order to avoid offending a team member, it is best to excuse yourself from events where access could prove challenging. Use an excuse that doesn’t reference your disability if at all possible. A sick family member, flat tire, or salon appointment is a good excuse not to attend team building exercises. If you recuse yourself in plenty of time, you’ll avoid looking like a wet blanket while others are having fun.

 

During meetings, please avoid calling attention to your disability by objecting to the language or suggestions of others. The able-bodied are very sensitive, and scolding them in front of their peers could cause emotional trauma.

 

If all of these guidelines are followed, we anticipate that our workplace can be a fun and inclusive environment for all. Let’s remember our company motto: “What’s Good for the Company is Good for All!”

 

Disclaimer: This post is satirical and inspired by this and this. Please have a good laugh at the expense of ignorant ABs everywhere.

Heartwarming. June 25, 2008

Description: A Barack Obama for President campaign sign is planted in a neatly mowed suburban lawn, next to a wheelchair ramp. There’s a young tree in the foreground, and in the background are several brightly colored pinwheels and a “beware of dog” sign.

 

There are little things that warm my heart, and among them is this house, with its beautifully crafted ramp, its Obama sign, and the whimsical collection of pinwheels.