This is our weekly Chatterday! open thread. Use this open thread to talk amongst yourselves: feel free to share a link, have a vent, or spread some joy.
What have you been reading or watching lately (remembering spoiler warnings)? What are you proud of this week? What’s made your teeth itch? What’s going on in your part of the world? Feel free to add your own images, too. (Anna insists that these should only be of ponies, but I insist that very small primates, camelids, critters from the weasel family, smooching giraffes, and cupcakes are also acceptable.)
Today’s chatterday backcloth comes from What’s Gaby Cooking?, via foodgawker. It’s nearly fresh-raspberry season here, so raspberries are catching my eye – and these minicheesecakes look absolutely scrumptious.
As always, I’d like to note that this thread is a good place to mention any accessibility issues you’re having with the site, or if you’ve noticed that something looks wonky.
Ahem. We are aware that the site looks like, well, a pile of decaying fish in IE8. We’re working on it; the problem is that, well, we kinda had to hack it a bit to get it to work in IE7 and now we have to hack it all over again and if we do that then maybe it will work in IE8 but not in IE7 and forget about IE6 and have I mentioned that Microsoft makes me extremely cross?
Microsoft makes me extremely cross. So, I’m sorry, IE users who are horrified by how the site looks. If it’s any consolation at all, we’re horrified too.
.-= meloukhia´s last blog ..We’re Doing This Wrong =-.
Darn, that reminds me I need to go make myself something edible. I picked up a bag o’ carrots on my way back from the TDOR vigil, then sort of scared someone by waving them about (I’d forgotten I had them in my hand).
I now have a rather charming image of you charging down the street, gesticulating wildly with a bag of carrots.
This pleases me.
From an email from my advisor: “Unless you become virtually disabled by your chronic health problems, we feel this [timetable] will be useful. Consider it encouragement.”
Yeah, so encouraging. Not that I’m already disabled by my chronic health problems (and not ‘virtually’ disabled, either, dammit) or anything….
Not to mention that the timetable has me on a very short deadline (less than three weeks) for something that needs more time even if I weren’t dealing with fatigue and chronic pain, and that deadline? December 31st. Not that I have, oh, guests staying over, family obligations during that time, or, say, a major holiday or two during that time….
So, does anyone have any advice on how to deal with this?? Being disabled is still new to me….
Bald Soprano – my advice would be to state what you need rather than ask. This can be done without coming off pushy – just firm. Avoid hedges – rather than say “I think I need” say simply “I need.” Offer the date/timetable you can be finished. Rather than mention the holidays, maybe mention that univ. services will not be available over the holidays, if you use the services and if that is true. (I’m thinking library and such here.) And, you know, disabuse the prof of the notion that you aren’t disabled, if that is something you want to do.
What is “virtually disabled” anyway? Is that being disabled on the internet?
Have I mentioned that I’ve been having the crappiest week ever? Because I have been (those of you who have me on Twitter [My account, for those who don’t] know all about it).
I’m not going to rant at length, but I went into walk-in counselling today, and the woman was really good.
She brought up the possibility I might have a learning disability (which is something I’ve been pondering long and hard myself) in a very non-judgmental, neutral way. Which I appreciated. It was when I was talking to her about some of my problems re: dissociation and hyperfocusing/defocusing (I do both, alternately. All the time, but it gets worse when I’m stressed, which I have been). So that was really good, and now I feel better.
I apologize for the nested brackets in that previous comment–I only just realized how absurdly unreadable it makes it. Sorry!
@ Meloukhia: Microsoft converted me to Firefox when they forced me to install IE8. For some reason, IE8 doesn’t work with my screen reader: all that I get on my braille display is the page title and some kind of non-working button that reads “Open this document”. I like Firefox far better than any version of IE since IE6.
There is a problem that I have with your site. I use an older version of IE, and while I am getting the same bold/italicized font that another person mentioned, I have a different problem.
The comment box is broken for me. I can comment, but I can’t read what I’m typing because the margine goes off past areas that are visible. I’m not sure if the image on the right is somehow on top of the text box or something like that, but I’m sure if I’m having this bizarre issue, others are as well.
For example, right now, I can see “while I” and then nothing until “that” from my first paragraph.
Had college neuropsych exam yesterday. Well, didn’t. The person who was supposed to provide me the exam in a digital format, had not put it onto the CD-ROM. Will hopefully be taking the actual exam next week. Fortunately the woman at my local study center (I distance learn but take my exams at a local university study center) said she’d be making sure I don’t get all the bureaucracy with missing an exam and having to prove it really wasn’t my fault so I can get another chance, blah blah blah. Hope she actually does.
Oh dear, K, that sounds extremely irritating. Which version of IE are you using?
The site looks good on Firefox, whichever version is the latest one is the one I have.
I’m having a good day, a day that started with a dog in my face. I’ve been in pain, but I’ve been in a good mood. I watched Khosla Ka Ghosla and Persepolis (it was in French! That counts as studying French, right?) and I’m comfy on the couch.
We put in the CSL log today, and Mom just put a real log in the fireplace! (We haven’t turned the heat on, it costs too much and ideally, it’s just Mom until semester break. She has a heated portable blanket and a small heater that heats up the other TV room nicely.)
Carrying on the bleak (I wanted to use sick, but I was worried that was a bad word. Is it?) humor from the “bad cripple” thread – I call myself a junkie. “I need insurance, you know I’m a junkie!” I’m not referring to the pain medication, but to the medication I’ll be taking for the rest of my life to stay alive. I don’t have my medication paper with me, and I’m not getting up, but I take a lot of medication. The most important is the synthroid. Of course, thinking about my medication and apocalyptic fiction – I couldn’t survive in the “new” world if society broke down, unless I broke into a pharmacy and found the right dosage of at least the synthroid.
I told my mom about the “bad cripple” post and she said the new “bad cripple” disease is fibromyalgia. Some people think it’s fake, and some of us know it’s real, because we know people who have it.
So… anyone dip their toe into the BollyWaters after last week?
Meloukhia–well, it was more the courtyard of my building, but there was definitely a person or two who saw that; I was, however, walking down the local high street cradling said carrots in my arm like a very small lumpy baby, so that was something.
This evening, I have also done some kitchen dancing to Tom Petty. No shame.
For the record, the site looks great in Opera Mini.
In actual news, the people at my volunteering place are ace. My boss let me leave early when I had a panic attack, even though all I said to her was “I’m all panicky and I don’t know why”.
@ Dorian – I’m glad you found a good counsellor!
@K, I have the same problem with the comment box going off the screen when I’m at work, where we use IE6, which is why some of my comments are full of errors. At home, where I use Firefox, I don’t have any problems at all.
Unfortunately, the browser at work is controlled centrally, we aren’t able to install or remove any software.
I’ve been wondering over the last few weeks whether I should be quite so open about my mental problems at work. Some people look at me very oddly. But I suppose that particular felix is now so thoroughly out of the bag that I’d never manage to catch it and put it back.
We’re watching Golden Girls right now and it’s a great show, and I think it’s great from a disability POV as well.
Anyone remember the episode where Blanche dates a man in a wheelchair? She makes the date before she knows about the wheelchair, since they’re both at a table. She’s nervous and drags Sophia along as a “chaperon” because she’s afraid of saying the wrong thing. Which she does. He addresses her issues, saying he’s the same person he was before the accident.
Then the chaperon is shoved out the door and they get to what Blanche does on dates.
But he’s not perfect, he’s got a wife in another state. “She doesn’t understand me. I love you, Blanche.” So the show shows that wheelchair users aren’t perfect, either.
And then there’s Sophia, old and decrepit and kickass!
So the show shows that wheelchair users aren’t perfect, either.
Mmh. I think we’ve seen so much of the Surprise! The Person With A Disability Is Actually A Shitty Person! twist that it’s occupying at least as much of the cultural landscape as the People With Disabilities Are Morally Flawless trope it subverts. And in both of them, the person with disability is not actually a character but a plot device, meant to uplift the neuro/physiotypical character and the presumed neuro/physiotypical audience.
In the latter rendering, the disabled person is the Magical $MARGINALIZED played straight; in the former the disabled person is the Magical $MARGINALIZED done inverted. I’m not arguing that disabled persons should be portrayed in either fashion. I want them to be fully-rendered characters. At least as much as the main characters, anyway.
I haven’t seen the episode in a while, but I felt that he was as fully realized as any of Blanche’s conquests. He wasn’t just a jerk a wheelchair, and he wasn’t made of glass.
I’m sorry, I realized as I was writing the episode description that I was messing up, but… I couldn’t think of anything else. And for the time the episode aired, maybe it was new?
Since this is an open thread and all, I thought I’d talk a little about something I noticed last week. Every weekend or so I try to get together with some of my buddies who are also (mostly) disabled. Some of us don’t get out much, and it’s kind of cool to hang out with people who get it. Whatever it is. So anyway, we were talking about our week and somebody brought up how whenever he’s out with his walker, it’s always old people who are “trying to be the disability police.” Which sparked basically a rant fest about how elderly people are more likely to judge/interrogate a young disabled person.
The whole conversation just felt so incredibly ageist to me. Like, how can my young disabled friends not understand that some day, hopefully, that’ll be us? We’ll be those “clueless old people who think they own legitimate disability.” The whole notion that anyone who’s disabled and elderly is disabled because they’re elderly is just so silly, as is the idea that we someone have a more authentic understanding of disability, since most of us were born disabled. I couldn’t express this to my friends, because I fail so hard at speaking, but it’s something that’s been rattling around in my brain ever since. I just don’t know what it is that I should say, or if I’m over reacting to someone’s harmless venting.
I was obsessing over my faux pas all evening…
and all I had in my defense was that he was definitely NOT an asexual “inspirational” figure that “betrayed” the characters by being “bad”.
He’s on the Golden Girls and dating Blanche – no way is he asexual! They dated for quite a while, and Blanche was very serious about him, which is why his cheating hurt.
He seemed a fully developed character, for a one episode boyfriend.
That picture is making me hungry even though I just ate. Now I want dessert.
Gossamer, I would have been one of those people ranting. The only people who have questioned my use of a cane in public are elderly men who are willing to walk up to be, sometimes even invade my personal boundaries, and tell me that I’m too young to be using a cane. When I ask them, “How long should I be in pain before I use it?” I get remarks about being “feisty” or “snippy”.
To me, it feels like the elderly people who accosted me had an understanding of disability themselves as something that only happens to the old. That, or their view of disability is very limited to degenerative conditions–a lot of those men would bravely talk about walking on broken feet when they were younger, and they didn’t complain, so young people today just don’t have gumption. I don’t think anybody gets a free pass on policing disability, especially if that person is going to play good cripple/bad cripple, and everyone under 65 with an ounce of mobility is a bad cripple. That’s ageist itself.
I told my mom about the “bad cripple” post and she said the new “bad cripple” disease is fibromyalgia. Some people think it’s fake, and some of us know it’s real, because we know people who have it.
I hate that… so much. It gets even worse if the person is young. People can’t seem to understand that hey, younger folk need accommodation too, so they assume that they’re just stealing them from the elderly and/or visibly disabled who really need it… *sigh* Or when the loved ones that have witnessed you in these states cause you to impose that mentality on yourself because they can’t see the pain you’re in and if nothing shows up on the tests, clearly you don’t have a real problem.
I have some accessibility success to praise!
I finally saw my urologist on Tuesday – he decided that the kidney stone was too small to be a problem, without wasting our time and money with another CAT scan of his own. Fortunately, that wasn’t the end of it. He elaborated on what my primary care doctor had said before the kidney stone was found – that my current problem had been inflamed and bothered. And he wants to take a look inside (I’ll be knocked out) and try some medication *internally* to help my pain. 🙂
This is more than Dr. Ego has ever done – he won’t take a holistic view of the pain. Sure, he’ll prescribe anti-depressants and whatever clonazepam is, but he won’t help when my moods are zig-zagging. He told me I should see a therapist.
Anyways, back to Dr. Awesome. The waiting room kind of sucked, there were no long enough couches to stretch out on, but we didn’t wait long.
Here comes the TMI – it’s a urologist. They want a urine sample. But it was a urine sample like no other, one I will look back on fondly while doing a regular urine sample some day in the future. Ick!
This was a plastic chair of sorts with a toilet seat over a giant funnel. The funnel emptied into a beaker with your name on it. No touching! 🙂
And then the nurse told me it was for their benefit, not mine – it was electronically something or other, so it measured how long it took you to go. Whatever, ultimate urine sample FTW!
Also, she did a bladder scan as soon as we were in the exam room – and the results were instant! And it wasn’t like an ultrasound where they stab and stab at my sides.
My appointment was at 2, we were seen by 2:15 and out within an hour.
The next day, I got a letter about my procedure. It was sent out after my appointment. I love getting out of an office before the sun goes down! (Dr. Ego never lets us go before the office closes – one time I was locked in.) The instructions and information were okay except for one little thing – the date was the day before!
Well, I called and left a message. But my mom was worried that the real date was Thursday and she needed to know ASAP if she’d be missing work, so I called again.
And the woman who wrote it up said it was her fault, she was sorry, “bless my heart”, and to call if I needed anything! No one at a doctor’s office has ever admitted fault before!
I am so pleased with the experience. 🙂
Also, I was laying down on the …thing… in the exam room, that was most comfortable for me. Dr. Awesome took my hand and helped me up. That was sweet.
And my mom was thrilled to be called Mama last name by the nurse. When my mom gets along with a nurse, it’s always a good thing. Except that they talk about me.
But so cool!
I haven’t been diagnosed with anything yet, and my pain won’t show up and I don’t react the “right way” when Dr. Ego presses on my abdomen. Apparently, if I’m not writhing and screaming and barfing, I’m not in pain.
LeeLee: thanks for the advice. My mother thinks that the professor thinks that ‘disabled’ == ‘unable to finish’ or something. And also that he doesn’t understand what chronic fatigue (not CFS, but fatigue from other causes that is chronic) and chronic pain means. I *thought* I had explained clearly enough, but apparently not.
Anyway, I’ve gotten myself a few days to figure out how exactly to respond.
The Bald Soprano: Is there a disability support office? I’m more familiar with situations where there is no requirement at all to disclose the nature and details of your disability to your teachers; the disability office works as intermediary, determines what sorts of accommodations are needed, and communicates with teachers to let them know. It’s not up to the teachers to then examine and reject the application; reasonable accommodations aren’t special favours, they’re the law. (Unless they’re not the law where you are.)
Well, mostly I’m getting the support I need, there’s just a lack of understanding of the fact that I am in fact disabled by the ‘chronic health problems’ I’ve been dealing with. I don’t think that the disability services could/would do much for me at this stage (not-in-residence, done with all my classes, just finishing my thesis).
Oh, Kaitlyn–your use of “asexual” kind of troubles me here.
Overtime is kicking my butt here. It’s there but for the grace of strattera that I am able to make it through and come home and try to worth through my internet moderating responsibilities.
On the other hand, I’m being taken seriously at work when I suggest ways that existing procedures might not work well for PWD, and when I state that my call stats will be off due to medication side effects. (Dry mouth +lots of talking +lots of water = bathroom breaks ahoy!)
Oh I’m familiar with the flow study chair, Kaitlyn. My urologist sees a lot of me.
Like meloukhia, I’m uncomfortable with your use of ‘asexual’ in our disagreement on portrayals of disabled persons. The big reason would be that it’s insensitive to people who identify as asexual. The small reason is nothing in what I said had anything to do with sexuality at all. Sexual activity, for me, is a morally neutral quality. A person can be highly sexually active or not sexually active at all and still be the Morally Flawless Disabled Person. It’s the promises made to people and whether or not they’re kept or broken that make sex moral.
In happier news, I’ve just ordered myself a PDA (no use for a smartphone, I’d have to buy a more expensive calling plan to use it, and I can’t afford that, really. I don’t even text!!). Hopefully I’ll be able to make it go beep at me for breakfast and lunch and little things like that.
@The Bald Soprano: Where’d you get your PDA from? I’ve been looking to get one for ages but there’s hardly any available these days that aren’t somehow connected to phone services. And I don’t want to just buy a phone and not get a contract with it. I want a PDA, not a phone.
Oh damn… I’m sorry.
I wasn’t referring to PWD who are asexual, but to the idea that once you’re disabled – especially if everyone can tell – you lose your sexuality.
I am just crashing and burning this weekend, aren’t I?
My day has been terrible – I wanted to watch a movie on my computer, my computer just shut down. So I went to bed. I woke up two hours later confused, disoriented, and sick to my stomach. I thought if I went into a colder room, my stomach would shut up. It didn’t. And now my mom is policing what I eat – no more orange juice.
And now I find I keep messing up every time I start typing. And here come the tears. Why does this make me cry easily but all the other times I wanted to because I was really upset, nothing.
That’s not to say that you shouldn’t correct me and tell me when something is offensive. I do appreciate it.
@Static Nonsense: Try an iPod Touch. It’s essentially an iPhone without the phone/3G component.
I still wish it were easier to get a smartphone with a data-only plan, incidentally– I like having internet access without being near a wifi hotspot, but not if I have to pay for hundreds of voice minutes I won’t use…
Ah, but codeman38, you can get a data only plan! You just have to prove that you’re really disabled! Isn’t that great?
Oh course, you probably already knew that, but I like to rant about it when I get the chance.
.-= thetroubleis´s last blog ..I am mine. =-.
Kaitlyn, we ALL mess up. It’s ok. Really. Just keep trying.
There isn’t a person on this planet who hasn’t done something shitty to someone at some point in their lives. Here in reality, most of us do it rather frequently (we just don’t always notice or have it called out). Just take some time to digest. And see the opportunity for positive growth.
What Amanda said. I mess up too, and apologize, and make amends as best I can. I’m nowhere near perfect.
The coverage of Glee makes me want to scream and throw things, or failing that curl up in a corner and feel very miserable. (Have done the latter but not the former.) Am bailing on the discussion and on linkspam (so sorry, Sasha :(), although I’m still writing up a post about stuttering; it is tough going because I am finding it revoltingly me me me me me all about me!!!
Also, a patient was misdiagnosed as in a vegetative coma (I think that’s the term) but was actually conscious and they didn’t realise the mistake for 23 years [link is in German]. I’m kind of boggled at this story. At… least they found out he was conscious, and he is now communicating? But the article has a statistic saying that in up to 40% of patients in waking comas diagnosed as vegetative, there is actually some consciousness still present, which is incredibly frightening and reinforces my hatred of people rushing to go “oh, there’s no mind in there” when the person question isn’t, you know, dead and rotting.
I’m sorry, I’m sure there’s an English link somewhere but it’s 2am. In related news, my sleep schedule has gone entirely awry and it terrifies me because this so often signifies the beginning of the end but I have no effing clue what to do!!! Does anyone have any helpful handy tips for me? I just cannot tear myself away from the computer, and because time never quite feels real to me I am very vulnerable to “just one more minute” and have a difficult time conceptualising that night is not infinitely long and if I go to sleep at two when I have a tutorial at nine I *will not* get enough sleep. I’ve been sleeping for twelve hours on Sundays, the only day of the week I can sleep in, for the past month at least and have been feeling horrible and exhausted the whole time. And, of course, the worse I feel, the harder it is to force myself to go to bed on time.
@codeman38: Only problem with an iPod Touch is that I’m currently in poverty with no financial aid so it’s a bit on the pricey side. Otherwise I’d love one. Does anyone happen to know cheaper alternatives?
Kaz – what I find helps me, is that I decide to watch a movie. (After this article, oh it links to another one!)
Anyways, I decide to watch a movie on nights before days where I can sleep in (or stay up all night because someone was wrong on the internet!!!!). Usually, I can start the movie by 12 or 1. The length doesn’t matter, and sometimes, ooh, I fall asleep watching the movie. If I don’t, I make myself go to bed after the movie. On the nights before days I have to get up early (ack!), I use the end of the Colbert Report as my bed time.
Sometimes just laying there, listening to music, even if I don’t fall asleep, is enough.
Amandaw, kanchinzero, everyone – I know we make mistakes, I know I make mistakes, I’m new to this. We were happily watching the Golden Girls until almost midnight! But then, maybe in conjunction with the nausea, my mood went south and I couldn’t just take it as “You messed up here.” and took the responses as “You’re a terrible person.” Sometimes constructive criticism is received correctly, sometimes it’s not.
@thetroubleis: Not only did I already realize that, I ranted about it in one of the threads here a while back. Specifically, the one about reading rights for blind people, in which the book publishers took much the same attitude as the phone companies take towards deaf and hard-of-hearing folks.
All o’ the above. I messed up yesterday, and probably the only reason I haven’t messed up today yet is I’m still barely awake.
Static Nonsense: I bought a Nokia N810 (it was EUR199 on Amazon.de). It’s called an ‘internet tablet’ –basically a teeny tiny Linux computer. I didn’t look at the iPod Touch because I need to be able to get info between the PDA and my linux computer (and my husband’s linux computer….). There are also the iPaq PDAs if you can deal with Windows. None of these options are cheap, sadly. I’m lucky that we have the money right now.
By the way, Kaz (I think it was Kaz), you mentioning getting an iPhone to use for this kind of thing was what gave me the idea.
Odds and ends: after pushing myself to my absolute physical limits at work, I talked to my boss and without quite disclosing disability status (“health reasons”) asked if he could just schedule me for shorter shifts. I will have to really scrimp and save but it will be worth it. Hurray!
Kaz: yeah, an unreliable time-sense (not sure what else to call it, but I know what you’re talking about) plays havoc with sleep schedule! I find myself relying on roommates or, often, friends on IM: “yell at me if I’m online past such-and-such a time”, “phone me by x o’clock to make sure I’m going to bed/getting up”, etc. But that can take an incredible amount of organization.
General question: are people with mental health conditions such as mood disorders considered neuroatypical? I’m doing some more writing about disability and am not sure how to refer to people without mental health conditions. “Normie” is right out. 😛
People without mental health conditions…
“Those unlucky people who have never been institutionalized or threatened with it”?
“Those who have never taken a medication to stop depression that eventually caused suicidal ideations”
😉
I think “people without mental health conditions” is probably the best, up your word count.
Aw, darnit, Kaz, I thought I replied to this last night and I guess I didn’t. Anyway, I wanted to say for the record that I am tremendously impressed with all of the work that the linkspammers have done. And I really appreciate the warnings y’all have added to the linkspam posts so that I can know ahead of time if something is safe for me to read or not. I imagine that organizing those is a lot of Not Fun Work, and I respect the decision to bail, quite a lot, actually. Thank you for all of that work you’ve put into the linkspams/discussion and I’m really sorry that it has been tough going.
I wish I had helpful handy tips for you in regards to the sleep issue, but my sleep schedule is a Hot Mess right now too. The only thing I might suggest (you may have already tried this), is programming a schedule into your organizer (I think you mentioned you have an organizer, right?) which includes times when you must step away from the computer to sleep, etc. (Or, if your computer can be programmed to shut down/hibernate on schedule, you could do that?)
codeman38, thanks for pointing me to the thread.
Sorry about the randomness of this comment, but has anyone seen/read this article yet? http://www.mercurynews.com/bay-area-news/ci_13846278?source=rss&nclick_check=1
It’s about a law student who has a visual impairment; the California Bar Association or whatever won’t let her take the Bar exam using a certain assistive technology.
Ack! That’s really bad, Este. Isn’t that illegal in the US? I admit not not knowing the particulars of the ADA.
Anna, under the ADA accommodation has to be “reasonable.” Obviously, that leaves a few holes in the patching. If whoever’s in charge doesn’t think the accommodation is “reasonable” (by their definition) in those particular circumstances (case-by-case, of course) then you’re out of luck.
Just a thought, but we’ve had a thread on assistive tech, maybe we should have one on accommodations? I know I’ve gotten ideas that have really helped me out from chatting with other people. Plus, you all are insightful.
.-= thetroubleis´s last blog ..I am mine. =-.
I picked up “Anything but Typical” by Nora Raleigh Baskin from the library this weekend. It’s a YA book and part of the reason it made it on my pile is the back cover that starts: “Neurotypicals like it when you look them in the eye” and well, it sort of hopped right into my hands.
I love good YA books. I loves them, I do!