Tag: no rebogs please

It wasn’t even that I hadn’t been identified as disabled yet, btw.

That was also the school that automatically tried to throw me into segregated special ed and insisted that I couldn’t attend without Ritalin, pre-ADA–but, my mother offered to sue them. (Problem solved! đŸ˜©)

So, no other support was provided, and they preferred to go with the “defiant and aggressive” approach anyway. From the beginning.

The weird denial and lack of backup at home didn’t help that situation at all, of course. Not going off onto that again right now. But, I keep realizing more and more as an adult just how much harm that did.

But, while the details of what they can and can’t readily get away with under the ADA may have changed somewhat? (Though the predecessor to IDEA did go into effect the year I was born. There were regulations they were refusing to follow already.)

The general systemic attitude really, really hasn’t changed. At all. Institutions mostly just use some different words and excuses to keep discriminating. And that was before the current political mess.

Autism and Emotional Labour

I don’t have the energy or wording ability to comment much on this one right now.

(Though I can’t say I much like the number of rather different things which do tend to get lumped together under that label. As a more general issue, not specifically to do with this post. The executive function stuff really doesn’t fit under “emotional”.)

Anyway, I didn’t get far into it before something struck me pretty hard:

If you read the MetaFilter thread, you’ve probably already pictured this scenario. Let’s imagine an autistic man married to an NT woman. (Possibly a stereotype, but also the situation of many people IRL, including people I know, so let’s just run with it for now.)

The NT woman says, “My husband isn’t doing any emotional labour for me. He never knows what I’m thinking or feeling unless I tell him. If I tell him what to do, he’ll do it, but that doesn’t feel like enough. Just once, I want someone to notice I’ve had a bad day and know how to comfort me, without my having to say anything. When my husband doesn’t do that, I feel so invisible and lonely.”

The autistic man says, “I don’t understand how to make my wife happy. She wants me to guess what she is feeling, but I can’t read her facial expressions or body language, so I can’t guess! Why can’t she just tell me what she wants? I always do whatever she asks of me, and it kills me that this isn’t enough.

Neither partner in this scenario is wrong. Both are suffering because of unmet needs.

That is a fairly stereotypical scenario. But, some of the phrasing caught my attention.

I am so, so glad to be living with someone now who is NOT in the habit of deciding they know what I’m thinking and feeling better than I do, without bothering to consult me about it. Much less getting all pissy on the regular, based on assumptions about that from whatever cues they’re (often badly mis)reading. And giving that much more weight than what I do say about my own feelings.

(While I’m turning more hypervigilant all the time, trying to predict and anticipate what’s going on with them based on observation and pattern matching 😩)

Talk about some very different needs and expectations, yeah.

I probably react much more strongly to that pattern since I do associate it with low regard for boundaries, the other person being unwilling/unable to admit when they’re wrong, and actual abusive behavior. But, I doubt I would appreciate it much even without the additional baggage, and with everyone involved consistently acting in good faith.

Important to recognize when communication just isn’t working well for everyone involved, and try to come up with some solution that does work. It’s also important for everyone involved to try there, getting back to one major theme in that post.

Hadn’t thought about the “please do not assume you know what I’m thinking and feeling” in exactly those terms before, I don’t think. But, I was also thinking again earlier about some other needs not always getting met so well usually being a decent tradeoff for generally more respectful behavior. And just not regularly having to put up with a bunch of interference and sniping, which never would have passed for acceptable had it gone the other way.

This is definitely one example, to the point that it jumped out in a rather triggering way when I read this a while later.

And, in the interesting groupings department (from the actual report linked here):

For the first time in 10 years, the “Middle Eastern/North African, American Indian and Disabled actors” category (formerly referred to as “Other”) exceeded 1%, largely fueled by disabled actors in Spring Awakening.

I guess that’s slightly better than “Other”, but it also sounds a lot like “groups of people we never expect to see in shows”.

It’s also a good thing somebody is collecting figures on disabled representation too, but besides the usually under 1% even combined with other groups? Putting that alongside ethnicity seems more than a little odd.

As for the “large enough that these guys form a cohort”, that is one of the reasons I pretty much stopped using G+.

Yeah, I also didn’t like some of the changes they kept making. But, Mr. C got me on there as soon as it went public (with him working there then)–and, from the get-go, there were too many of those guys.

Not all of them employees, but also others attracted by the existing cohort. Like there’s any shortage of them in tech anyway đŸ˜©

I never personally got to deal with garbage beyond some comment trolls looking for public posts to be assholes on. And at least it is more possible to filter who can see/interact with posts over there.

But, doubting I’m the only one who got tired of that as another reason to stay away. I can only imagine what some of the internal discussions turned into.

I had been following that mess to some extent for a while.

The situation was already to the point that some people targeted had been advised by Google’s internal security to post something explaining the (already reported to police) harassment on their doors–and hope the cops would actually stop long enough look at it 😩–in response to the swatting threats.

(As came up not long ago in discussions of the totally inadequate to the point of criminal negligence police preparation/response after that guy in was murdered in Kansas. But yeah, just one indication of what’s been happening there.)

But, what Mr. C heard from Liz yesterday had him extending an open invitation for them to crash on our couch anytime, if they need to get well away ASAP. And let’s just say he’s not prone to overreaction.

Guessing that was at least partly thanks to the further backlash expected after that article got published. But yeah, the situation really is looking that bad. And I think he’s feeling even worse than I am that there’s not much concrete we can do to help.

clatterbane:

Keep reading

That issue seems to be getting worse, which was kinda my suspicion anyway.

Feeling freshly overwhelmed, as is hopefully understandable. But, I did come up with some ideas.

Following through is the hard part, especially with already pretty much operating in emergency mode where what few spoons are available have basically been going into getting through the day. And of course worrying about what I haven’t been able to do has been sending it into deficit a lot. Been an issue for a while, but the energy available is probably at an all-time low.

Anyway, I didn’t say before, but I finally did hear back from that advocacy organization, and they did point me at another one that is supposed to cover our area. Looking at their site, I get a stronger impression that I am just Not Disabled Enough on paper to qualify for much assistance. (Even if I were, not having officially lost my civil rights in any way–yet– might be enough to get shifted to rock bottom priority.) And that it might go beyond limited funding. That was just the vibe I got.

But, their NHS complaints service specifically sounded a lot more possibly inclusive. It probably couldn’t hurt to try to get them to help with the “dropped from ophthalmology, basically because I am multiply disabled” rationing by obstacle course situation. To hopefully get some of the specific concerns there addressed as well. (No energy to get into that.)

Maybe, if I detail the larger situation and am very lucky, someone might be willing to refer me for some other help dealing with the unfamiliar system. Not counting on it from the sound of things and general experiences here so far.

(How does whoever I might be dealing with feel about weird foreigners/gender variant people/etc.? We just don’t know. And the staff looked very older White British.)

But, hopefully they can at least get ophthalmology willing to see me again when I have probably already permanently lost some sight due to bad accessibility.

Trying not to get hung up to a paralyzing extent on that right now, but of course I am concerned about the likelihood of my being able to make and navigate any future appointments without some of the other underlying issues being addressed. Including access to (competent, halfway respectful) basic diabetes treatment, to hopefully help keep everything from continuing to get worse.

And of course I keep kicking myself for “letting” things get to this point at all
basically by being disabled and otherwise marginalized, without necessary supports available. I know it’s fucked up, but these messages are persistent And not just something my own personal craziness cooked up.

Anyway, I’m trying to figure out how to get that underway in spite of already low energy getting sucked by terror. And fighting PTSD. It might help, and probably couldn’t make the situation worse.

In the meantime, if it get too bad, there is a limited hours emergency eye clinic at the local hospital. (Would definitely drag Mr. C along for whatever backup he could provide, especially after my half-deaf ass’s last experience with the regular ophthalmology clinic there and their terrible communication/mixups I witnessed in one visit/etc.)

Assuming I could make it through triage–particularly with the atmosphere right now–and ophthalmology didn’t just turn me away because I did get dropped from regular services.

Still, it is another option. And “I am probably having retinal bleeding as we speak” should hopefully qualify as an urgent thing. Not so sure at this point, but hey.

I would probably do well to take a break, anyway, the way everything has been happening too much lately.

But, I just get so tired of the endless stream of discussions like this, working so firmly from one very specific set of background assumptions about How Things Must Inevitably Work. While nobody involved seems to even be aware that there have indeed been actual working examples to learn from. (Again, not trying to single out anybody there, because it is such a common pattern.)

From my own sufficiently different perspective, what gives me major trouble is trying to figure out how to adapt some (tested!) approaches to actually work with very different social structures/frameworks as a starting point. Or even successfully get across some ideas, again dealing with some very different sets of base assumptions.

Definitely not an easy proposition, but not the same sets of concerns involved. At all.

Where I really start despairing sometimes ties back in with that little Asshole Wars ramble from the other day. Not going to get much of anywhere other than more AW when you’ve got a significant chunk of the population treating those patterns of interaction as not just normal but inevitable.

Much less get anywhere near that good old “self-control and neighborly co-operation as the only acceptable form of government”. When too many people haven’t learned to do either thing that well, and really don’t seem to see the point.

Getting a headache again just thinking about how self-fulfilling this crap can turn, tbh.

I don’t have a lot of wording spoons right now, and possibly less patience. But, several earlier reblogs tie together pretty well to describe some of the frustrations I keep running into with people Doing Politics.

There was one post from comcastkills, then two connected posts from theunitofcaring. (I picked that reblog of one not so much to point at the commenter specifically, but because that does express such a common set of ideas which are unfortunately relevant here.)

It gets frustrating enough sometimes, trying to deal with people who really do not seem to recognize or value many modes of interaction other than Asshole Wars. That obviously does not describe everyone trying to Do Politics, but the ones going for AW as praxis are difficult to avoid. They want it that way, and the weird self-righteous dominance behaviors apparently keep working for them.

Chances of getting much constructive done plummet, the more of that behavior gets tolerated and the more other people get driven off by it. AW as praxis mostly leads to more AW. Hardly surprising, but such a depressing pattern.

I just really do not have the spoons to start into some of the reasons I think this keeps happening right now. But, I wish I had more reasonable expectations of those factors getting successfully addressed anytime soon. Without some serious cultural changes.

But, I even started writing this because I got reminded yet again of how much I love the frequent conflation of approaches rooted in progressive pragmatism (or assorted other non-Western political philosophies), with being a Filthy Centrist Collaborator who expects people to kiss up to The Oppressor.

There are some pretty big differences there, to the point that it’s not really part of the same game at all.

(Righteousness is a very dangerous word in English and in European history


Both idealism–the idea that God is on someone’s side–and vilification–the idea that one side is evil or fundamentally in the wrong–are barred from this process. #)

But, too many people don’t know or care to find out what someone is even talking about when it’s easier to force-fit everything into their existing widgets. Crucial to the Asshole Wars, whatever the front. And disturbing how many people do seem to regard that as the default.

I am kind of freaked out right now, because it’s become obvious that no, I am really not imagining some visual disturbances. Not noticeable all the time–or super serious yet–but yes it’s a thing.

It’s not going to improve on its own, but progress. And I don’t know of much to do about it.

Especially after getting dropped from ophthalmology (on the verge of needing laser treatment for retinopathy over a year ago), basically because poor accessibility and the support available made me miss/have to reschedule too many appointments. And without GP access, for assorted reasons including the same. Even if I could make a GP appointment and get there with communications support/general backup that’s just not available, I have no reason to believe they would listen to me about it even with the dx’ed retinopathy. Particularly after that totally unsolicited “mental health review” letter a while back.

Not going to vent much more right now, and it’s probably time to try and distract myself for a while. But, it’s overwhelming. And nobody would deserve any of it for being disabled. Or any other reason, including “laziness”, “being silly”, “being weird af”, “making people not want to help you” (thanks Mom!), etc. Yes, that includes me.