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4:27am August 2, 2015

Thanks.

I’m not even sure I remembered this book existed:

I Openers: Parents Ask Questions About Sexuality and Children with Developmental Disabilities by Dave Hingsburger

But someone sent it to me, and whoever it was, thank you very much.  It must’ve been something I put on a wishlist and then forgot about.  Not only is it strange to get a copy of it, but it’s strange to get a like-new copy of what’s clearly an out-of-print book that was printed in 1993.  But it’s in absolute mint condition, wherever you got it from.  And I’m always thrilled to get a book by Dave Hingsburger that I haven’t read yet, because even the ones that have a lot of things I disagree with, I always learn things from, because one of the amazing things about Dave as an author is he’s sharing his learning process over the years about ethics in general, and he does so with a level of honesty few people can hope to approach.

Also thanks to the two separate people (or same person twice?) who ordered Twirling Naked Through The Streets And No One Noticed: Growing Up With Undiagnosed Autism by Jeannie Davide-Rivera.  I’m always looking to add things to my collection of books by autistic authors, and such books have exploded so much lately in terms of production, that there are as many books I don’t have as that I do, even though I have one of the largest collections of such books that I know of.

If anyone’s interested, this is my Amazon wish-list for autism-related books, nearly all of which are written by autistic people.  Don’t anyone feel obligated to get anything for me, it’s just there if for some reason you have the desire to.

There’s also a few books on the list written by non-autistic professionals and other so-called experts that I want for research purposes.  By which I mean, research into what experts think, not necessarily actually believing the experts.  Sometimes I find it important to know what they’re saying, even if I don’t agree with them. 

(And then this post got really long and rambling, so the rest is under a cut.)

Although I draw the line at reading Simon Baron-Cohen these days – I used to read his books, but I don’t think I can stomach the one where he compares autistic people to people without a conscience.  That goes way too frigging far, especially given the fact that my bullies lately have been preying on exactly the fact that I have an over-active conscience, and it makes me enraged to think that anyone would see autistic people as lacking one in any way.  Especially since actual research since the nineties has shown we have plenty of conscience, as much or as little as anyone else.  For instance, there was a study done showing that we didn’t always understand social situations and what was going wrong in them, but once we did understand what was wrong, we had the same sense of moral outrage as anyone else.  (I have a copy somewhere in the house, in a stack of papers a mile deep.  Unfortunately that goes for all the studies I got copies of a few years ago.  The ones that were lucky enough to survive being shuffled around my house and a move or two.)

Anyway, thank you for the books.  I think my mother sent at least one of them, so thanks Anna.  And thanks to anyone else who might have sent these and other books and other items in general over the past few years.  It’s been a huge help, especially the people who were able to help me buy items for my new apartment at a time when all my finances were being taken up by moving and communication device malfunctions, and then all my emergency money was stolen while I was hospitalized (never bring money or valuables to a hospital unless you have someone literally watching your bag 24/7, if they’re going to leave it alone for an instant then don’t bring it, there are people who will prey on that).  I’m barely starting to dig out of that hole a year later, and I still have expenses related to the apartment (I’m not done unpacking, and many things have gone missing, and etc… I waited a year before giving up on finding cleaning supplies we lost in the move and just replacing them, and we’ve finally mopped the bathroom for the first time since I got here, it was so foul and disgusting by then I can’t even describe it) and Fey’s hyperthyroid condition (although pet insurance money I got back from an expensive vet visit helped me buy a 3-month supply of her meds, which she’s doing quite well on, she’s back to her grumpy old lady cat self), and other things.

My intent with the autism-related books is also to review them on another tumblr I’ve set up, and I’ve written some reviews but haven’t gotten the blog started yet because other things have gotten in the way, plus I’ve wanted to get the about page written before I could review anything.  I’m trying to write concise reviews, which is a very difficult exercise for me writing-wise.  My language problems make me more long-winded than otherwise most of the time, although practicing writing haikus and tankas over the past year has helped me learn to express at least some things concisely.  So I’m trying to force myself to make most of the reviews and the about page as short as I can while still containing meaningful information. 

I’m also trying to make the reviews mostly about the good parts of the books.  I used to think I was doing the world some kind of favor by telling people everything I hated about certain books, and I don’t want to shy away from saying when I really find something disagreeable, but at the same time I don’t consider writing negative reviews a virtue anymore. 

Although even back then, my negative reviews got misunderstood a lot:  I remember one extreme example, a review where I admitted I didn’t like a book, but gave the author a number of compliments (for instance, I said it was good that the author was able to make friends in a situation I was unable to make many friends in – I don’t know how ze turned that kind of statement into an insult but ze did) because I was trying to be as fair as I could even to a book that left a bad taste in my mouth at the time.  It didn’t work.  Ze took every single compliment as an insult and then told zer blog readers to write positive reviews and to also try to get my review taken down so ze could go back to having a five-star rating on Amazon.  I eventually took the review down voluntarily, because my views on the book had changed considerably and I wanted to reflect what I actually told people about the book when I recommended it to them.  But the assumption that my initial review was a personal attack, and that the compliments were actually insults, resulted in people being pretty nasty to me.  And those assumptions carried over into some pointed comments made in the reviews that were essentially a response to mine.

At any rate, I want to be more positive in my reviews this time around, although there are always going to be some books that I will feel obligated to say some negative things about.  For instance, there are some books written by autistic people that are essentially Indigo/Crystal child type stuff, and the fact that they’re written by autistic people doesn’t make those views of autistic people any less damaging.  But I don’t doubt the good intentions of the authors, I just don’t agree with them and find that entire set of assumptions about the world and the people in it highly dangerous and disturbing.  So it’s not like I’m going to gloss over things like that, but I’m still going to try to mostly stick to the good things about these books.  Especially since I’m no longer a somewhat hot-headed late-adolescent, which I was when I wrote most of my previous reviews (all of which I’ve erased by now, pretty much, whether I continue to agree with them or not, and whether they were positive or negative).

And no, there’s nothing wrong with having an opinion while being an adolescent, and I don’t mean to belittle the views of adolescents.  But I can now see how immaturity contributed to some of my views at the time, including the view that the world really needed to hear every single detail about what I thought of various books.  In my mid-twenties – the brain finally gets out of adolescence around age 25 – things started changing drastically for me, including my idea that the world really needed my totally uncensored opinion on every single damn thing.  And my anger at the world started fading around the same time, which had fueled some of my negative opinions of things. 

Of course none of this ever prevented anyone seeing anger and insults where none existed, a thing that continues to this day and seems to have something to do with my communication style and other people’s assumptions about what such a communication style means.  Even when I was frequently angry at the world, some people read anger and hostility where none existed.  And even now that I’m rarely angry about anything (not that anger is bad, I just don’t get mad that easily anymore), there’s still people who read me as angry and insist on seeing and responding to anger that doesn’t exist.  Sometimes I think they must be angry, and projecting it onto me, or that what I write makes them angry and so they read anger into what I write, or other weird things like that.  I do know that nothing I say ever convinces them otherwise, once they’ve made up their minds.  And that it can be really surreal to write something and have most people respond as it was intended (not angry, not reading any anger into something that can’t possibly be motivated by anger, etc.), but a small minority of people insisting they see anger in it that’s not there, and then using the supposed anger as a jumping-off point to flame me.  At some point I realized I didn’t have to put up with that, and stopped publishing such comments.

I used to think I was obligated to publish every comment my blog received no matter how nasty.  Especially because the nastier people will always make accusations of censorship if you don’t give them a platform to spew their hatred on your own website.  Which isn’t what censorship actually is, but regardless, people have a right to control what they will and won’t let other people say on their own blogs.  I’d even say there’s an obligation to not let other people use your site as a platform for hatred, but it’s still up to an individual whether they decide to act on that obligation or not.  I just hit delete these days, except I will screenshot something first and send it to my lawyer if it seems to be a threat or tied to my stalkers in some way.  Some people rot13 nasty comments so that you have to work to read them.  Other people leave the comments up as-is but respond to them in ways that make it clear they don’t approve.  I personally delete them because I find that having hatred around encourages more hatred and scares off innocent people who have a legitimate reason to be there.

(One of the most bizarre hateful comments I got was one in which someone who I am pretty sure was one of my stalkers, who had fallen out with another of my stalkers, tried to encourage me to stalk my stalker, and gave me a bunch of “information” about the person that may or may not have been real.  Needless to say I was disgusted and that one went to my lawyer and got deep-sixed the moment I was done sending the screenshots.  The idea that I’d ever want to stoop to stalking my stalkers after getting a taste of what it’s like to be stalked, boggles my mind.  And it’s possible the person sent it to me hoping I’d be twisted enough to use the “information” and then get in trouble for it.  But I’m not that twisted, and I deliberately forgot nearly all of the “information” provided.  “Information” in quotes because I don’t know, or care, whether it was real or not.  The topic of people who’ve done horrible things and then claimed to be doing them “on my behalf”, and then I got blamed for them, is a whole other can of worms.  And believe it or not I’ve been told off for “being too harsh” in telling people to quit harassing people in my name, told off by the same people who accused me of putting people up to this BS!  Some people are never satisfied no matter what you do.)

Anyway, I’ve now rambled far from the initial topic, because it’s late and I’m in pain and I’m distracting myself.  But basically, thanks for the books, and if you’re ever interested in helping me with my autistic-authored book collection, a link to that wishlist is above.  The books on the list are in no particular order, just the order I found and added them in.  It amazes me that there are now almost as many books on the wishlist as are on my bookshelf.  I remember when my collection didn’t even take up a full row of books on a bookshelf.  Now there’s so much written by autistic people that I could never afford all those books even in Kindle edition. 

I do have some Kindle editions of some of them, but I don’t count those as part of my collection:  They’re there so I can review the books even when I can’t afford hardcopies, but I still need the hardcopies for my collection and because it’s a different experience than Kindle books even if I am incredibly grateful for the existence of Kindles.  But for the purpose of an actual book collection, rather than just a method of reading, a Kindle won’t do, for me.  Both Kindle books and hardcopies of books have their uses, and they’re different.  I like being able to annotate Kindle books and underline things, and I like being able to read without having to hold up a book and turn the pages.  Myasthenia gravis will make that hard sometimes.  In fact I got my first Kindle pre-diagnosis when I was so weak from undiagnosed myasthenia and adrenal insufficiency that I could barely turn over in bed let alone hold up a book, and the ability to read with a Kindle saved my sanity.  So my desire for paper books isn’t a Luddite anti-Kindle thing, it’s just that a physical book collection isn’t the same as an electronic book collection.  And I do have a distrust of electronic devices for long-term storage of anything, whereas I know that (barring physical damage from a flood or something) my hardcopies of books will be safe for the rest of my life at least.

I also got myself a thing last year specifically for that collection… I had wanted to get bookplates for this collection, but I soon realized that it would be way too expensive, even to print my own, just there’s too many books.  Instead at one point I got myself a book embosser for about $40, and now I can just clamp it down and it embosses a little design with my name in it onto one of the pages.  I’m very fond of that little thing.  I’m still not through embossing the books, but at least it’s easy, just squeeze the thing over a page, and it doesn’t need ink or paper or anything, it can be used indefinitely.  I know some people wouldn’t like the idea (since it alters the book), but I like it.

I also recently got myself another thing for the exact same amount of money – a device that hooks to my television and now I can watch Amazon Instant Video and Netflix and just about any other Internet-TV/movie-type services I’d care to subscribe to, on an actual full-size television.  I now feel much less guilty about having a TV, because I actually use it now.  The TV itself was a gift many years ago, and I only used it for occasionally playing videos or video games on it, because I didn’t have or want cable.  So I felt bad that someone had bought it for me and I wasn’t using it.  But these days, if your TV has an HDMI port, there are things you can plug into it that will let you connect to the Internet and use whatever video services you subscribe to, to watch videos from online.  I’m kind of amazed by that.  I watch a lot of Netflix and Amazon movies (and TV shows like Star Trek) while I crochet, and it’s nice to be able to do that without tying up the same computer I use to communicate with most of the time.

And besides its use for myself, I’ve wanted to have things like that available for a roommate when I get one.  I’d already considered whether to get cable for the sake of a roommate, but now I don’t have to consider that because I have this instead and it’s way cheaper.  The reason I want certain things for the sake of my roommate, is that when you’re offering someone to be a live-in caregiver of any kind, it’s nice to have some “perks” like free Internet or cable or video games or furniture or other supplies.  I already got faster Internet than I’d normally get, so that when someone moves in we can both use the Internet at the same time without it lagging a lot.  It’s such a small apartment, and the bedrooms so tiny, that I feel like I need to offer some incentive to live here beyond just the free room and board they’re offered through the roommate agency.  So I’ve amassed a small collection of items and services that they might want and/or need, from things as “frivolous” as television to as practical as furniture and cooking supplies.

I actually wish I could take the smaller bedroom and offer them the larger one – there’s something really endearing about the smaller one for some reason.  And it has two windows, so I could put an air conditioner in there.  The problem is with a hospital bed, oxygen compressor, and other medical equipment, I just don’t have space to live in the smaller bedroom.  My bedroom is cramped enough in here, it’d be impossible to even walk into the other one if I had my equipment in there.  (And I’m not sure the bed would even fit, we had trouble squeezing it into this one and the closet door is permanently open because of it.)

Anyway, again, thank you for the books, whoever is sending them, and thank you to everyone who has sent anything at all over the past year since I set up the wishlists.  I appreciate every single thing, and I save the notes you all send me. 

One person, though, sent me a gift because they felt guilty about things they’d said to me online, and I just want to say, please never feel obligated to do anything for me if you feel guilty about something.  And please never feel obligated to get anything from any of my wishlists for any reason – they’re there for people who want to and are able to help me get things, not to try to force anyone to help me get things.  (And also, some things I put on there on the off chance someone for some reason would one day get them, but I don’t actually expect anyone ever will, and that’s fine with me.  There’s literally no expectations here.  If nobody ever got me anything off my wishlists I wouldn’t be offended in the slightest.)