Marquis de Saydrah

Because I’ve moved from thinking, “I’ve GOT to blog that!” to doing it.

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?

 

Thoughts on Funerals July 22, 2008

Filed under: thoughts — saydrah @ 6:02 pm
Tags: , ,

Some thoughts on funerals, not particularly organized, and making no particular point:

 

Cause and Effect: I’ve been sick to my stomach all day now. The chicken, or the egg? I felt unsettled and ill throughout the service, but was I sick to my stomach because of the funeral atmosphere, or unable to appreciate the service because of my nausea?

 

Confusing: Why black for funerals, when it’s tradition to send flowers? We don’t send black flowers or flowers covered in black fabric, so why are we to send ourselves draped in black? Are the guests to be mournful, and the decorations lively, to de-emphasize the importance of the living, to pay respect to the dead, or simply to indulge the mourners’ feelings, the grief that says, “You are not allowed to have fun, or be colorful, because someone you loved is dead and it would be wrong.” Oughtn’t guests wear the colors they feel reflect the departed’s impact on their lives? Black for a solid soul, a grounding force, but red for a firebrand who leapt into every project with force that left observers reeling.

 

Odd: Sad music is depressing when joyful, and uplifting when mournful.

 

Puzzling: Why, at every funeral, is there one person there who none of the mourners seem to know or recognize? They peer at photos of the deceased with interest and hug the surviving family tightly, but as they turn away, the family whispers, “Does anyone know her name?” or, “Have you seen him before?” Are they funeral-surfers?

 

Amusing: The brother of the deceased takes his seat in a pew, waiting to greet guests. His cell phone rings. Loudly, audible throughout the chapel, “We’re conducting market research. We’d like to send you two DVDs, free of charge… do you have a few moments for a survey?”

 

Amusing, again: The twenty-something grandson of the deceased invites a friend to the funeral. The friend arrives, dressed identically to the grandson, down to the cufflinks and hairstyle. The women in the family giggle, but the young men don’t notice until it’s pointed out to them.

 

Presumptuous: The pastor rails against families who eulogize their loved ones with tales of a love affair with a sports team, a favorite vacation, or a hobby. He says it’s more meaningful to live a life heaping affection on family members than to define one’s life by season ticket holdings. I wonder who’s sitting in a back pew, drying her eyes and feeling hurt as she remembers a departed sister or brother who bought season tickets, every year.

 

Giggling through tears: The flag presentation ceremony, performed by two older men and one younger, wearing crisply pressed uniforms, perfectly rehearsed in nearly every detail. The youngest soldier;s role is to assist in the folding of the flag, and he tucks the edge just a touch sloppily as he hands it back to the soldier a few years his senior. The experienced soldier holds the flag to his heart, observes the uncrisp edge, and delivers it back to the younger soldier, who tucks the edge perfectly on his second try. Not a word exchanged, eye contact unbroken, ten seconds at most, but a moment of normality and humanity in an otherwise starched and flawless ceremony.

 

Upsetting: The grandson is smoking again. Doubtless, quitting is difficult while grieving, but didn’t the deceased quit smoking some years ago, and impress the importance of that choice upon his grandkids? Hadn’t said grandson quit a while ago, gone maybe two years without a cigarette? Why sacrifice that?

 

Touching: She had a stroke some months ago. She arrives without her husband, whose chronic condition prevents much travel these days. She’s flanked by two sons, and her third son welcomes her to the chapel. He’s son-in-law to the deceased, and she has, though limited by hip replacement, stroke, and arthritis, come to support him and his family. She uses a cane, and sons and grandsons flutter around her, watching every step for a wobble, ready to catch her and set her back on her feet. She doesn’t wobble. After the service, two sons help her to her car. The third is behind the wheel.

 

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.

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.”

 

Life Sucks, Here’s a Bug. July 14, 2008

Filed under: Animals,Photos,sad,seen walking the dog — saydrah @ 10:28 am
Tags: , , ,

Death in my SO’s family yesterday. Life sucks right now, don’t really want to talk about it, at least not yet.

 

So here’s a bug.

 

Green Bug on Leaf

Green Bug on Leaf

 

The Drama Llama Rears its Ugly Head July 11, 2008

Filed under: rants — saydrah @ 2:36 pm
Tags: , ,
Drama Llama followed me home? Uh-oh!

Drama Llama followed me home? Uh-oh!

 

It seems that the Drama Llama has decided to pay me a visit. I did not invite this houseguest, nor did I give it permission to spit on my couch cushions and eat all my bagged salad. Nonetheless, it seems to have made itself very comfortable, so I suppose I had best just work around it for the time being.

 

I belong to a small group that was, in years past, a successful club made up of people whose views were aligned fairly similarly and who worked together well. From what I’m told, I came on board as those years were coming to an end. For the past year or so, the club has been successful but plagued by disagreements; in the last couple of days, it seems to have fallen apart completely. The two members remaining from the group that founded the club have resigned their board positions. I think I will resign my own board position, too, and go back to participating informally in this particular hobby until and unless another club forms that resembles the way this club was in its first years.

 

It’s always sad when drama causes the end of a good thing. I often get to see, through my job and volunteer work, people at their best. I meet people who are active and involved in their community, advocating for issues that matter to them. I meet people who save abused animals and rehabilitate them. That just makes it more shocking when I see people at their worst. Like the person I thought I knew who sent an email to a woman who has been dealing with a major family crisis telling her, “Don’t expect any respect from me.” Or the person who I considered a friend who was contacting my other friends in the club and telling them not to trust me and that I have no moral fiber.

 

I hate it when things fall apart like this. It’s bad enough that all good things have to come to an end eventually, but do they have to leave so many hard feelings behind when they do? I had a feeling the club’s days were numbered, but I wish I could have taken most of my friendships away from it, not just the few that have survived the sudden explosion.

 

Drama Llama, please go away soon!

 

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

Adapt Gathering in Civic Center Park
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:

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.