moiread: (FRINGE • in the dreamtime.)
Cutesy tone notwithstanding, 50 Ways to Help a Chronically Ill Friend is a really fantastic list. Some of it's stuff you'll have heard from me already, but it always bears repeating.

Stuff.

Jun. 2nd, 2012 12:07 pm
moiread: (CRIMINAL MINDS • newspaper.)
• Yesterday my LJ had 43 views. Today it's had 473 and it's still only noon. I blame [livejournal.com profile] elisem! Only three abusive comments on that post so far, though, all of which I deleted immediately. I knew some trolls might come out when people started passing it around but such a low number is really nice! Probably my dinky journal is just not worth people's time. Heh.

• Last night I ordered in a mountain of sushi because I was ragingly hungry and my finger mysteriously wouldn't stop clicking things. I am still eating from that mountain of sushi today. This is so awesome.

• One of my co-op students from last year learned some ASL from me while she was there and went on to take an ASL class at the local college this past semester. She knows I haven't been well enough to take a class myself (which is why I have limited myself to only learning vocabulary and am avoiding dealing with grammar so as not to learn bad habits) so she brought me her textbook from the level 1 class as a gift! It comes with an instructional DVD and everything! I've been working through it and am super ridiculously excited. I think her hope is that, if I can handle the level 1 textbook just fine and my health improves a bit, I'll be able to take the level 2 class with her this fall. I don't think that will happen but it warms my heart that she would want to take a class with me.

Nikko Hurtado does awesome tattoos. Also I have found a tattoo artist for my sleeves once the artwork is ready and I've put the money together. (These two things are related only by being about tattoos; I could never afford Nikko and anyway his style is all wrong for what I want.)

JC Penney responds to the One Million Moms boycott by producing a Happy Two-Dad Family ad.

The Dark Chocolate Batman. I heart geek kids. That made me think of my eldest niecelet, whose war cry when wading into roughhousing with her siblings is, "FOR HYRULE!"

• My school put in wifi. On the one hand, this solves the problem of my smartphone not getting any data signal in 3/4 of the building, and I'm a geek who likes tech upgrades, so it's kind of cool. On the other, my school is full of kids whose families can't afford food or weather-appropriate clothing, let alone school supplies, so even if the wifi network only cost a few hundred to set up, I am really angry at the complete lack of priorities that allowed that few hundred dollars to go towards wifi instead of, say, bolstering the breakfast and lunch programs. Really, really angry. The fact that I am not ranting about it is simply due to the fact that it's been two weeks since it got announced and I've had time to come to terms with knowing I can't do anything about it.

• Also, after ten years, we are getting a new principal. They're moving ours to an inner-city school and giving us the principal of a well-off suburban school. I don't know where our new principal was before that, so for all I know working in a nice Kanata school was a total trip for him too, but still. I am wary. And I will miss our current principal, who was so very tremendously excellent, not only within himself but specifically in what he did for our school.

• Last year, my job was three days a week. This year, it got cut down to two. Next year, it will get cut down to one. This is despite maintaining our participation numbers. Why is it always the kids who need the most help who suffer the greatest when budget cuts come around? I may have to quit in order to look for something else, which would mean the kids don't even get their one day a week homework/classwork support sessions. It's a really difficult decision for me, but I have until sometime in September to decide. I don't know what else I would do that would be as flexible, as rewarding, or as indulgent of the fact that I have tons of experience but no degrees. I guess I'll look at job-hunting when the time comes if it's needed.

• A cartoonist I adore, Spike Trotman, has created a book called "Poorcraft". It is about living well on less money, and it is really fantastic. It just came out and already she has reports that it's being included in "starting over" kits at some women's shelters. A physical copy is $10 and PDF copies are half that.

• One of my recent treatment thingos is working out very poorly for me and giving me daily pain. This sucks, obviously, and is making my life more difficult than it already is and certainly more difficult than it needs to be.

• My old air conditioner was a monstrous standing unit that took up a lot of floorspace and caused $200 electricity bills, but it did do one cool thing (oh so punny!), which was that it drained water into a tank that I could empty into my garden. Unfortunately the new tiny energy-efficient window A/C I bought and installed this past week does not; it uses some newfangled evaporator ring instead. I have tasked my engineer brother, whose day job is building complex water parks, to build me a hose that can clamp onto my kitchen faucet and be unspooled out to water my garden, because refilling my monstrous watering can in the bathtub and then hauling it out to the yard five or six times at a go is really annoying. I demand better tools!

• Related: my garden is full of growing things and it makes me really happy. The ivy I planted last year is actually grown enough now that I can drape it up the fence! In a few years, it should be a great privacy screen between me and the parking lot. Other things I will plant this year to see how well they compete: sweet peas, clematis, and morning glories. In a perfect world, all four would take and my fences would be gorgeous.

• I have been slowly acquiring the better part of a new wardrobe. (The clothing part, not the furniture part.) It's kind of cool to own stuff other than baggy jeans and t-shirts, to have stuff that actually fits me properly because it was made to my measurements. I've never really thought that would be a thing I could have, and it's done a lot of good for my self-image. Yay!

• I probably can't afford to go to Chicago this summer. Not unless someone else going to CapeCon can give me free crashspace. But I am definitely going to Farthing Party in Montreal and my brother is considering dropping in for a day or two, which would be AWESOME. Fingers crossed.
moiread: (BATTLESTAR GALACTICA • cards & cigars.)
There is a Rumi quote being passed around some Buddhist circles on Twitter and through a mutual connection wound up in my social circle. It goes: "Don't get lost in your pain, know that one day your pain will become your cure." And I got really, really angry when I saw it, for reasons that more than a few of you can probably guess already.

Deconstruction time! )
moiread: (SEX ED • chlamydia.)
Originally posted by [livejournal.com profile] coffeeem at Help Us Support Planned Parenthood:
Note from me: I was initially suspicious about this, since the notice below doesn't say how much of one's V-gift donation actually goes to Planned Parenthood. But I found the answer in the original post's comments: 100%. All the money you spend to shower your friends with Planned Parenthood v-gifts will go to Planned Parenthood.

For those of you who don't approve of Planned Parenthood, your response is easy: Don't buy one of these. None of your LJ subscription money goes to PP. If you'd rather donate an equivalent amount to an adoption charity, or another organization providing inexpensive or free medical assistance, please do; all charity organizations are hurting for funds in this economy.


Originally posted by [livejournal.com profile] theljstaff at Help Us Support Planned Parenthood:


Join us in standing up for reproductive health and education. Planned Parenthood, the organization that delivers reproductive health care, sex education and information to millions of people worldwide, has come under fire in the U.S. lately, with many politicians on both state and federal level seeking to end funding (and in a few cases succeeding).

During the month of May, you can send a specially designed Planned Parenthood vgift to your friends to help support this cause. (And if you need someone to send it to, [livejournal.com profile] frank is always happy to receive gifts!) There are three variations ($1, $5 and $10) for you to choose from, but they'd all look good on your profile when your friends know that you stand by something so important.

                    

Thank you all for your help in our support for Planned Parenthood. This promotion ends June 1, 2012; LiveJournal is not affiliated with Parent Parenthood. For more information about Planned Parenthood, please visit: http://www.plannedparenthood.org/

-The LiveJournal Team


(If you'd like to help spread the word that we're raising funds for Planned Parenthood, you can crosspost this entry in your own journal or community by using the repost button below!)
moiread: (joy! • stock.)
To lighten the mood:

Outdoor fuckin' starts today! )


Press play and then, when the bottom left menu loads, click the button labeled "CC" for English captions. There will be two lines throughout -- the top one will show the lyrics, while the bottom will show the actual translation of the signs. The fact that CaptainValor does both, side by side, is part of why he is awesome.

Also, songs are an awesome way to learn ASL, provided you can get help with the grammar. (Like helpful people who include the literal sign translations. See above, re: CaptainValor, awesome.)
moiread: (HOUSE MD • cranky cloud.)
Well, she posted a bunch, but the one I'm talking about said:

Yeah, but would you burn?

For those of you who have ever told me or any other hearing-impaired person, "Oh, there are times when I can't hear what's going on either!" I have one question:

Have you ever been left in your workplace during a fire drill because you could not hear the fire alarm?

I have.

So if you haven't, kindly shut the frack up next time you want to compare our situations. And then go think on how patronizing and clueless "Oh, everybody has trouble hearing sometimes!" is, when you say it to me and people like me. Thank you.


And you know, I understand that fear. Not because I'm hard of hearing but because of other stuff. I miss fire alarms all the time and have no idea until later. There's not much I can do about it and it scares me shitless that one of these days, the alarm won't be false and I won't come to until I'm trapped. (This is why I insisted on an apartment on the ground floor, too. At least that will increase my chances of getting out at the last minute. Me + meds that knock me out + a day where I can barely walk + stairs + walker + mental confusion = so, so, so bad.)

And my thing that matters for this isn't even all the time, not like hers. Yes, I have days where I'm on heavy-duty pain or migraine meds that leave me incapacitated, confused, or passed out and nearly impossible to rouse, and that's a scary thing for safety. But I also have days where I'm not in that position, whereas she doesn't get to have days where she's not hearing-impaired. I understand the difference there.

As a related aside, though, I've been told to get a service dog to help with this. Service dogs can hit emergency buttons for you, and can wake up or otherwise alert you to things you can't hear, etc, etc. They're super duper awesome helpful! And I know that's true because I know people with service dogs who do these things for them.

But nevertheless, when people say that to me, all I can do is laugh. Because it's a lovely idea... if you don't also have mobility issues (dogs can't carry you to safety!), or the money to afford a service dog, or your health issues would prevent you from properly caring for a dog (and thus you don't meet the requirements for getting one), or you don't have the support system required to help you care for a dog (also a requirement), or you don't have any agencies near you that will provide service dogs on a sliding scale or for "free" (note: not actually free, even for the cost to obtain, despite what it says on the tin), or the agencies near you only provide dogs to people with other health problems you don't have, and so on. Seriously, I've contacted every agency between here and Toronto to see if there were options that could work for me. No dice.

Not that I want an animal I can't care for. But the point is: Helpful solutions -- sometimes neither helpful nor a solution! And those of us who are used to falling between the cracks, of being too much for one solution but too little for another, who get left in the gap to figure everything out ourselves... We get a little bitter about it sometimes. And we're allowed.
moiread: (COMICS • wonder woman.)
And here is my thing to say:

I talk a lot about what's it's like to live with my particular disabilities, and I've posted PSAs a couple of times about Stuff Other People Could Do To Help That Are Actually Helpful To Me Instead of Just Comforting To The 'Helper' and Why, When You Ask Me How I'm Doing, I Usually Shorthand The Truth To "Fine" Even If It's A Complete Lie and like that. So today's lesson will not be about those things.

Today's lesson is about retraining the way you look at, and think about, and respond to disabled people. Or at least the types of disability that I have enough experience with to talk about.

So here goes:

We are not babies. We are not helpless. We are not stupid. Before you rush to help a disabled person with something that seems obvious to you, STOP. Think. Do you actually know this person well enough to know what they are capable or not capable of doing? Have you considered that, if you're wrong and they ARE capable, it is surely really fucking frustrating to have people always assume you can't and rush to your aid like you're in need of saving? Because, sure, helping your fellow man is nice, and opening doors for someone else or helping them pick up something they dropped are general kindnesses that make us Good People. But please, consider: You are probably not the first person to rush in to save the day. Probably not even the hundredth. And when everyone around you, day after day, week after week, year after year, assumes you can't do something, it stops being kind and starts being a message about how everyone sees you. It is a constant BARRAGE, and the amount of it really does matter.

Let me reframe this with an example:

If you were perfectly capable of spelling your own name and yet every single time you ever gave your name to someone, the person standing behind you or next to you interrupted you to add, "That's spelled N-A-M-E," and then smiled at you cheerfully in a silent "you're welcome!", or patted your arm sympathetically, that would suck. Not only are they all assuming incorrect things about you, but then they act like you being grateful for it is just a given. At first, sure, you would think it was an honest mistake or this was just one isolated busybody. You would assume the best and let it go. But it kept happening. After awhile, you would start to get annoyed. You would start to just find it rude, but you would politely put up with it anyway because you don't want to seem bitchy. After all, clearly they all mean well. And then at some point you would stop politely putting up with it and snap, "I CAN SPELL MY OWN NAME, THANK YOU." And then if it still didn't stop (after all, why would yelling at one person suddenly make everyone change?), if for years this continued, it would be beyond really frustrating. Maybe even depressing, that so many people thought you incapable of spelling your own name. Maybe it would start to affect your self-esteem. Maybe you would go back to not saying anything -- not because it didn't bother you but because it had ground you down and picking a fight over it for the thousandth time seemed like a pointless waste of energy.

And what if you actually did have some slight trouble spelling your name? What if you could do it, but it took you a second to think about it and arrange the letters properly? What if nobody ever gave you a chance? What if they noticed your pause, even if it was just for a second or two, and jumped in to spell your own name for you? EVERY TIME? And smiled at you like they were so sure they'd done good and you should be grateful to them? I think I would hate having my trouble rubbed in my face that way every time. I think I would not see the intercessions on my behalf as a helpful thing, because it's not as if the me in this scenario couldn't do it herself. It's just that everyone assumed she was stupid. And I think that would seriously start to affect me.

And now imagine if it wasn't just that one thing. Imagine if the problem had many facets, many situations where that could happen, all kinds of variations on the theme. But none of them happened any less often. They ALL happened ALL the time, and it wasn't just strangers. It was your friends, your family, your lovers. Your coworkers. Your boss. It affected how well people thought you could do your job. It affected your livelihood, and it also affected your ability to fight for that livelihood. And on and on like that.

So think about that before you rush in, assuming you know what's best. If someone is genuinely in distress and nobody helps, that's a terrible thing, but it doesn't have to be either/or, black/white, act like a hero or be a villain. Learn to wait a second and see what happens. Learn to ask. Understand that there is a difference between someone in a wheelchair figuring out how to manage his or her groceries and someone choking to death in a restaurant. Sometimes being kind is saving the day, and sometimes being kind is realizing it's not your day to save.

So yeah. We are not babies. We are not helpless. We are not stupid. We just have a thing that makes life different, sometimes harder, but we are still humans like you.

And this one is especially important for the families, friends, and caregivers of someone with disabilities: If we are over the age of eighteen, then we are also adults. We want to be treated like adults who have a thing, not overgrown children who need to be managed. If you are a person who regularly helps out someone who is disabled in ways that need helping, that is very awesome of you, but do not for one second think that this is All About You. Do not for one second think that you are somehow parenting us, that you get to make All The Decisions for us and speak for us just because you're the one helping, or that you have the right to put all your stuff ahead of ours because you are doing us a favour. (Like, you know, if you offer to drive me to or from somewhere, please don't leave me stranded in your car while you also run two hours of errands. If I needed the ride, it's because I was already in pain or low on energy, etc, and the net result of your actions is that I am worse off after your help than I would have been without it. Seriously, that can wreck me enough to make me miss work on subsequent days. I completely understand that you are doing me a favour, but favours that make people miserable are not actually good. I could have found someone else if it was going to be a problem for you!)

If you wouldn't do it to a healthy adult, don't do it to us. If you cannot do it respectfully, get out. Learn to ask. Learn to negotiate, like with anyone else. You need to plan together, in as much as you're both able, like your priorities are both important, because to do anything less is to assume that we are not really as real as you, that we don't matter as much, that we are burdens or accessories or projects, not people just as valid and feeling as you. The fact that you are healthy enough to do more than I can and help me out does not diminish me as a person. It does not make you better or more important and it does not turn off my brain or how I feel.

Even if I was "helpless", even if I was incapable of feeding myself or wiping my own ass, I'd still be a person, and I'd want to be spoken to and listened to and considered as one, just like you would if I was your perfectly abled neighbour. Even if my level of mental competence was lower than the norm, I'd want to be treated like it's where it's at, at 80% or 50% or wherever, but like my feelings and personhood were at 100%. Not like it's all at zero. Because I'm still a real human being inside this body.

To conclude: You don't like being patronized, probably. Neither do we.

(Blogging Against Disablism Day 2012 roundup.)
moiread: (dude • stock.)
(Disclaimer: If you are reading this, you are not the person with whom I am angry, and I do not expect any of you to ever be this much of an asshole, but I am going to say it anyway because I need to get this off my chest.)

Look. I understand that you have opinions about women's sexuality that are coming from your interpretation of your particular religion. I respect your right to your religion. I do. I may have all kinds of other feelings about your particular choice of religion, or about religions in general, but I respect your right to have one and to live your religion as you see fit within the limits of the law and basic human rights.

But when the group is discussing the legitimate treatment of ovarian cysts through the use of the hormones available in oral contraceptive pills, you do not get to tell me that you "have a different opinion" because you're Catholic.

You have a different opinion on what? OVARIAN CYSTS? Did I miss the part where you obtained a medical degree in the last thirty minutes and now you want to contest the diagnosis? Are you advocating for prayer in lieu of treatment? Do you think cysts are some kind of divine punishment and therefore should be left alone? Seriously, what? What part of the treatment of ovarian cysts do you have a different opinion ondue to your religion? Because from here it just looks like you opened your mouth without thinking first and let a little steaming turd drop out.

We were not discussing sex. We were not discussing religion. We were not discussing you. We were discussing medical treatments for medical conditions using available medications. I understand that those other aspects are part of a similar, related discussion happening in many other places at the moment, but that is not what we were talking about. You have missed the point entirely.

And frankly, it offends me on a personal level that you would even have the gall to say it, considering the medical condition in question is something I have been fighting for the last thirteen years, something that has caused me a lot of pain and grief and hospital visits, that has left me with deep emotional scars that I have had to work on healing. Just because I have the good fortune to live in a country that isn't completely fucking batshit about medical care doesn't magically negate my strong connection to this particular topic.

Maybe you didn't know it was personal to me. I can see how that would be the case, as I rarely talk about my medical problems outside of LJ or Twitter. But I expected you to be smart enough to figure out that it's got to be personal to somebody, whether you know them to be within earshot or not, and I hoped you would be classy enough to treat the topic accordingly.

TL;DR version: My ovarian cysts have nothing to do with your fucking religious views. Shut the fuck up.
moiread: (bedmonster • alicia w.)
I am totally sitting here eating chocolate cake and catching up on Chronic Illness Cat. You may remember my previous CIC macro spam post. Have another! *grin*

CHRONIC ILLNESS CAT SAYS... )

I totally needed that laugh. Hee.
moiread: (POLITICS • canada/NDP.)
We interrupt this recent string of posts about medical issues to bring you a post about my other favourite topic: POLITICS!

Behold, an awesome video on FPTP:

moiread: (hugs • katee s.)
"You married?"
"Yes, sir."
"She all young and pretty and know how to treat you right?"
"Yes, sir."
"You can't believe how lucky you are, how life can be so good to you. Right? Well, she gonna turn into that."
"We all do."
"Well, don't that piss you off, boy?"
"Not yet."

"That's my wife in that box."
"I know. I'm very sorry."
"Fifty-six years I spent sleeping in the same bed with that woman. Fifty-six years, listening to her talk about the same shit, day in, day out."
"It's late. Maybe I should drive you home."
"Shut the fuck up, boy. Let an old man speak."
"Okay."
"She chased me across the front yard with a steak knife once. Tried to cut my ass. We spent close to a year apart. That time like a hole in me now. She the only one that ever really knew me."
"Well, you know, your wife will always be with you, in your memories. When you love somebody that much, they never really--"
"You sell that shit to somebody who's buyin' it, 'cuz I ain't. You don't know nothin' 'bout love. Some pretty little thing catches your eye and the next thing you know it's been fifty-six years and you done shit all over yourself in the movie theatre and she the only one that'll help you clean it up. That's love. You don't know nothin'."
moiread: (railroad • maria m.)
"Wade into that water. Gonna have to learn to swim. Either I'll sink or I'll float. That's a good way to begin." From the Sun Parlour Players' Pacifist's Anthem. [link]

There is no point in denial. There is no point in saying, "I wish this hadn't happened." Because of course you wish it hadn't happened. Of course it would be better if it never had. And you can take awhile to sit and process -- you can take the time to acknowledge that feeling -- because it's true and it deserves that recognition. Your pain is valid. But staying there does you no good. The only thing you can do is walk on into whatever it is and figure out how to work with it, live with it, live despite it. That's the only way to win. Either you'll sink or you'll float, but you have to begin to find out. Nothing can get better than the misery of the first moment where you were slapped with something catastrophic if you don't move past it. You can't get to the other side if you never wade in. You just stay stuck in that moment of awfulness and pain.

It makes me feel very seventeen again to say this, but music really has been helping me get through the last few months. I have gotten very very good at coping with stuff, thanks to the way my life has gone, but it makes things easier when you feel like you're not alone. And not just from people you know. It's sometimes even nicer to know that there are people out there you've never even met who know this and understand this too. It is that universal.
moiread: (laugh! • julia s.)
These made me laugh until I cried. I can barely get around today, so I needed that a lot.

I am going to spam you with a ridiculous number of cat macros now. You can just cope!

CHRONIC ILLNESS CAT SAYS... )
moiread: (POLITICS • canada/NDP.)
Why "First Past The Post" sucks as a voting system and exactly why we are struggling under a Conservative minority government at the moment, the fuckers:

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