Category Archives: happy posts

What a Lovely Surprise

I was recently reminded of the importance of noticing, appreciating, and celebrating “good disability moments” – those times when someone responds to me or treats me in a non-ableist way. This is more than the lack of discrimination or oppression, this is someone treating me as I want to be treated. Although these moments aren’t as routine as I would like them to be, they certainly come along, and I think it’s important to remind myself that not everyone will respond to my disability negatively or with fear or anger. Another side benefit is demonstrating how easy it is for people to act with compassion and caring on disability issues.

I read a post at Rolling Around that highlighted a recent “good moment”:

A Wheel-trans driver just came to pick up one of our members (a bit late, but understandable). While loading the member onto the bus, this driver took the opportunity to have a conversation with our member (she didn’t even realize that I was there). This member has a profound disability, he’s also blind and can’t answer back verbally. She spoke to him with kindness throughout the loading procedure, reassuring him he was going home, letting him know what she was doing and she was joking around with him. This driver has a huge heart and smile and made sure that no matter how stressed she was feeling due to traffic, she didn’t let that ruin someone else’s day. Too often people with disabilities are passed off and are not seen as “normal human beings” that have emotions and feelings. It’s a wonderful thing to see it when someone takes time out of their day to talk to members, be friendly, maintain professionalism and make someone smile with such a simple act of kindness.

I recently had a “good moment” of my own. I was at work, eating lunch with a few of my co-worker friends, people who know my disability status and whom I trust enough to feel comfortable discussing my disability issues. I mentioned how I had seen a lot of recent articles about lithium mining, spurred by the recent discovery of huge lithium deposits in Afghanistan, which prompted lots of articles analyzing lithium mining industries in Bolivia, and so on. I laughed that every time I see one of these articles, I have to consciously remind myself that the lithium they’re getting is to use in electronics and industry and that it isn’t being mined for pharmaceutical reasons. Partway through the story, I realized that one of my newer co-workers was sitting with us and remembered that I had not discussed my disability status with her, so continuing my story would basically be outing myself to her, but I was so far into it I couldn’t stop without also calling attention to my disability status. So I plunged ahead, saying that my reaction to those headlines is always to think “I don’t need that many pills! You all can stop mining the stuff now! I’m all set! Thanks!”

New co-worker laughed at the punchline and then the conversation moved on to other things. She didn’t stop the conversation to say, “wait, you’re on lithium? Isn’t that for crazy people?” or any other questions. She didn’t ask me what I take it for. She didn’t ask me anything, in fact, but continued to chat and laugh with me and the others with absolutely no change or shift at all. Since then, she’s continued to treat me exactly the same as before – griping about World Cup officiating, wondering if the A/C in our office will ever work reliably – and hasn’t mentioned or questioned my disability issues at all.

It is difficult to say how much this means to me. The ability to talk about myself, to share those jokes, without encountering negativity, curiosity, or even stares, made me feel like my disability did not set me apart from the group. That mentioning my medication in that context was equally mundane and non-notable as mentioning I have a cat, or drive a Honda, or don’t like beets. It was the feeling of acceptance. Of equality. And it was amazing.

The One Damned Sock…

May 1st was Blogging Against Disablism Day, and I have in my drafts at all three blogs to which I contribute regularly a post started where I had intended to write something for the day. I had my work writing caught up, so it was all I had left, really. Then something unexpected happened.

I had a really good day that day.

Like, a low pain, high energy day. The kind where I woke up and the first thought in my mind was not “oh, damn, my neck should not be moving right now”. The kind where I was able to sit up right away, get dressed, make the bed, and not even think about much else other than what I wanted to do. I didn’t have to stretch or cry or shake The Guy awake for a pain pill. I felt… good.

I got up before anyone else, and went straight to the kitchen, and turned on the stove, and got out all of the ingredients to make my famous on two continents and a Pacific Island brownies, which I had been wanting to do, but hadn’t really felt up to in quite some time. I have managed to do the things I have needed to do, mostly with great pain, and some of the things I have wanted, with guaranteed pain. Often “things I have wanted” meant that I had to plan on some quality time with my sofa, or even my bed the day after because of the massive overdraw of spoons. But on this day, this particular day, I got up and made brownies, before anything else (OK, I lied, I went to the bathroom and such things). I made brownies, and when Kid woke up she arrived just in time for me to have finished the double boiler melting portion and she got to help, and it was a joyous experience that we seldom get to share.

Then, as the brownies were baking I made Kid’s favorite breakfast; Spam, eggs, and rice. We ate to the wonderful smell of chocolate baking in my DeMarle muffin cups, which I managed to rig in my Korean oven, all while correctly guessing the temperature (our oven doesn’t have numbers on the dial for whatever reason and we have yet to find an oven thermometer) and to the sound of my new Kelly Clarkson CD mixed with my pop/rock mix on the iPod dock in the kitchen. Everything was perfect by the time we cleaned up. We had cupcake-shaped brownies for later, a clean kitchen, and I still had energy… all before 1000 (that’s 10 AM for you non-military folk).

So, since laundry is my nemesis and I was feeling spunky, I rounded up all the white clothes to be done and tossed them in our Korean combo. We packed up all of the things we needed for the baseball game for that afternoon ahead of time so we wouldn’t be rushed later. I washed and packed our new sun tea-pot and the tea we intended to brew (Ginger Snappish, you can’t find that when it isn’t the holidays, but thankfully my Guy picked up a ton of it at the after X-mas fiasco sales) and snacks. We had Kid pack her after game bag for her over night play date (you mean, a grown up night alone!?! Perish the thought!). Everything went so smoothly. Showers, dressing, all without near-passing out in the shower simply trying to wash up. I didn’t have to sit down for a rest after my shower before dressing and managing my hair. Everyone was ready to go, and I checked on the laundry before we left: one hour to go and we could hang it when we got home.

The baseball game was so much fun, as I have decided Coach Pitch games are. If you haven’t had the pleasure you should swing by one and check it out. NO ONE KEEPS SCORE! It is one of those rare things that fills you with such glee (the lighthearted joyeux feeling kind, not the rage-inducing trainwreck of a U.S. Telly show kind). There is something about the event that is kids sliding into home plate when no one is even in the vicinity of the catcher with a ball. We bantered with our new friends while our kids picked flowers in the outfield (“Hey! The ball is coming right at you, Center Field!”) and our tea brewed in the sun. A good friend I have made here wandered over and we had a genuinely great time watching 6-8 year olds slide into home plate while perfectly safe.

The Guy and I had a quiet evening and went up to the mall to catch a movie, and after eating at our favorite Ramen place (because my new throat thing has left me Not Allowed to have spicy food, so budae jjigae, which is our usual grown up night dinner, was right out. WOES!). We wandered through the book store and I got a lovely key chain for 3,000 won that is shaped like a shooting star and a pencil case for my purse, and a few bobs and bits for crafting. We went to the theater at iPark to see what was playing, and saw that Iron Man 2 was here, but decided that we just can’t see it w/o Kid, so we decided to have some Red Mango and go home.

We got a cab easily, which is a surprise, got home and put on some comfy clothes. I read my new Star Wars book and laid my head in The Guy’s lap while he rode a Chocobo around for some post-game Final Fantasy XIII fun. Then, before long we just went to bed. Because it was the end of the day and we were sleepy. Not because I was exhausted or because I was in so much pain after having been out for the day that I was pleading for a pain-killer and sleep to get through it. Just…because.

The next morning we decided to treat ourselves to Early Bird Brunch at the Dragon Hill Lodge (where, as it turns out, The Kid was brunching with her school mate and her family, but we played like we were some big movie stars hiding in the corner, which was both funny and ineffectual). With the hour and a half we had before we had to pick Kid up we hopped a cab toward Dongdaemun to do some quick errands. I got a new mug with a smiling waffle on it, which makes me so happy I could *squee*. A smiling waffle! On my coffee mug! I love Korea!

Kid and her Friend and Friend’s Brother were playing baseball at the playground when we picked her up. We loaded her stuff up, brought her home for a short nap before we did our Sunday chores (like we have regular chores on Sunday! HA!). When Kid was rested from her night of fun, she helped me hang all of that laundry. Getting all of the white clothes done is a special accomplishment for me because I hate washing and folding socks. Like, loathe with the passion of ten thousand suns hate. I remember my mother saving entire baskets of socks for me to mate and fold, and to this day I detest the chore. They were all done and I was so happy. Yay me and my body that let me get something done.

And that is when I found it. Stuck under the shelf in our laundry area. One sock. One damned sock, smudged with baseball dirt from the field from last week’s game I am sure or maybe practice, but there it was. All of the white clothes hung on the line clean, and there I was with one dirty sock.

That might also be the time I realized that I had missed finishing any post about BADD. I honestly felt like crap about both. In truth, though, I think that when we live with disabilities we seldom remember that living those good days — if we are privileged enough to have them — is our own way of speaking out against ablesism/disablism in small but powerful ways. We are allowed to live, and to not make every moment about our disability if we are able. Because we are more than the sum of our abilities or disabilities. We are also people. We have lives and families and friends events that mean things to us. There are things that happen every day that keep us, sometimes, from that drafts folder. Occasionally life happens and we are allowed to hold on to it.

This is not to downplay the activism that is writing and blogging because these things are essential in my life. They keep me whole as a person and fill wounds that are gaping for me, emotionally, especially when there are so many that doctors can’t fill for me physically. It has given me a network of people who I can’t believe I ever did without. But I am going to say that I will not flog myself for missing this one event this one day, or rather, getting this done a few days late.

That one damned sock got away from me on Saturday, and I am going to wash it eventually, but it will have to wait until I am ready. I certainly didn’t plan for my disability to take over my life, and I don’t get to plan my good days. I just take them when I get them.

Originally posted at random babble… on o3 May 2010

Disability Representation in Music (Video), You’re Doing It Right: Janelle Monae’s “Tightrope”

This recent music video from singer-songwriter Janelle Monae is a great example of how not to completely screw up representation(s) of disability. Lyrics are located here.

And a description, courtesy of FWD’s own S.E.:

A black title card reads: ‘The Palace of the Dogs Asylum: Dancing has long been forbidden for its subversive effects on the residents and its tendency to lead to illegal magical practices.’

Two people in tuxedos are seen sitting against a white tiled wall. One is reading a book and the other is playing with a small ball, which eventually drifts up and floats in the air. The reader turns to see it and looks surprised.

Cut to an ominous-looking institution with a sign in front reading: ‘The Palace of the Dogs.’ Bright yellow text reading: ‘Monae and Left Foot: Tight Rope’ overlays the image as bouncy music plays.

Cut to a scene of a nurse pushing a cart full of medications. The scene starts with her feet, in sensible white shoes, and slowly pans up. She is moving down a hallway. As she proceeds, a woman (Janelle Monae) in a tuxedo without a jacket, with her hair in an elaborate sculpted pompadour, peers out the door of her room and then ducks back in. As she closes the door, we cut to her in her room, leaning against the door, and she starts singing.

The video cuts back and forth between the nurse moving down the hall, Monae singing and dancing in front of a mirror, and two ominous figures with mirrors for faces draped in black cloaks, seen from a distance. She eventually puts her jacket on and moves out of her room, softshoeing down the hallway, and other people, also in tuxedos, join
her. They storm into a cafeteria, where a band is playing, led by Big Boi, wearing a peacoat, a scarf, and a snappy hat. Monae jumps up onto a table and starts dancing, while people dance all around her.

As everyone dances, the nurse is seen peering around the corner with an angry expression. The scene cuts to the nurse gesticulating at the black-robed figures, who start to glide down the hallways and into the cafeteria. Monae dances right out of the wall, leaving an imprint of her clothes against the bricks, and ends up in a misty forest in what appears to be afternoon light, where she is pursued by the gliding black figures. Leaves cling to their cloaks. Evading them, she walks through a concrete wall, leaving another impression of her clothes behind, and she winds up in the hall again, where she is escorted by the robed figures. The video cuts back and forth between scenes of her
walking down the hall and the scene in the cafeteria, where music still plays and people still dance.

As she walks, a man in an impeccable suit and top hat walks by and tips his hat to her. She goes back into her room while people dance in the hall. The camera closes in on a table covered in papers and a piece of equipment which looks like a typewriter. She types a few keys, and then touches the papers, which turn out to be blueprints marked with ‘The Palace of the Dogs.’ She sits down on her bed,  rests her chin on her hand, and looks into the camera. The music fades and the scene cuts to black.

I really like what Cripchick has to say about this video: “i love the way that this video A.) critiques psychiatric institutions and B.) shows the ways that institutions/society/ableism polices our whole beautiful creative selves because if unleashed, we are powerful/uncontrollable.”

Additionally, I thought the cloaked figures were an interesting representation of the concept of the looking-glass self; another interpretation might be that they represent Bentham’s panopticon, or the sort of menacing, omipresent societal structure in which we must police ourselves constantly in order to be considered “normal.” Those are just two ways of looking at one aspect of this video, however.

What do you all think?

Interlude: Cat toy edition

I am quite fond of the pharmaceuticals I keep organized in my nightstand drawer. But I have to be careful not to drop them, so that the cats don’t find them and try to eat them.

But now, there’s a pill I can drop on the floor and let my kitty chew on all he wants! And if he tires of that, he can roll the bottle cap around the kitchen floor for awhile.

catatonica

(A screenshot of the Etsy page for a pill-shaped cat toy. Several pictures are shown of a long-haired ginger tabby cat enjoying the catnip-filled, half-red half-blue felt toy, and the plastic orange pharmacy bottle with a prescription label reading “Catatonica.”)

The item description:

These jumbo pills contain a healthy dose of extra strength cat nip – just what the good doctor ordered.

Each pill measures approximately 3″ long and each vial contains two.

So get to the pharmacy STAT! You’ll want to make sure you have plenty of “mothers little helpers” on hand.

DOSAGE:
Take one down, bat it around, kitty is sure to have a ball.

POSSIBLE SIDE EFFECTS:
Temporary ants-in-the-pants followed by extreme drowsiness. Increased appetite not uncommon.

Only $8! I spend way more than that on my human medications. Check out kgrantdesign’s shop for more deliciously cute kitty toys. Next up: fried eggs and bacon.

(Cross-posted at three rivers fog.)

How to Be a Good Doctor

Update: It was pointed out, correctly, that part of this post contained a statement that made a generalization based on age. That statement has been removed and the post updated with this message. It’s not feminist, and it doesn’t belong here. I’m sorry.

I actually had a really good experience with a physician recently. Like outstanding. With a specialist even — an endocrinologist, so if anyone in the northeast Texas general area needs one, I can recommend him without hesitation. I was kind of nervous; I’d seen an endo before when I was starting my transition but stopped because he was a really huge jerk. (My GP wasn’t entirely comfortable with writing scripts for hormone replacement but has been willing to for a while now. She’s also recommended and trans- and queer-friendly.)

Accessibility was poor to okay: I could have done with a chair by the reception window while waiting for them to copy my ID and insurance card. To get from the curb cut by the reseved parking to the front door, one has to go down the sidewalk across the front of the patio to where the ramp up the patio is. At least three cars were parked so that their noses stuck out over the sidewalk. If you couldn’t squish down to 18″/46cm wide, you couldn’t get through there. The doors were all unpowered and the front doors were on the heavy side. I didn’t see Braille signs at all. There was, blessedly, no music and no TV in the waiting rooms. The exam room was freezing; fortunately for me I’m tall and the ceiling was low and I was able to close the air conditioning vent but that’s not a widely available option. There were wide spaces around the furniture in the waiting room that looked like they’d easily accommodate wheels and other assistive devices. Some of the furniture was squishy but some wasn’t and the non-squishy furniture had arms to push up with.

They got to me right about when my scheduled appointment was. They weighed me, measured my height — 202lbs/91.5kg and 5’11 3/4″ (yes, they really measured me to the quarter inch ((sheesh)) and yeah I’m that tall — people comment constantly on how nice it must be which it kind of is except when I’m trying to buy clothes: for all that they love models my height designers apparently don’t believe women don’t come my size and shop at Target)/182cm — with my boots off, and they did bring me a chair for getting them on and off without my having to ask for one.

We waited in the exam room less than ten minutes. Maybe five. The office had mailed me a new patient packet with all the usual stuff to fill out (and the usual uninclusiveness of gender- and sex-variant people on the form, sigh *tick* F). The doctor apparently had spent the five minutes reading and absorbing it because he came in and introduced himself and greeted the wife and me as Mrs. and Mrs. Brown. It felt really good because NO ONE DOES THIS even the people who know we are legally married. Holy shit. The wife explained that I had an autism spectrum disorder and was not having a good day communication-wise. Also that even though I was not talking much today I was plenty smart (which is a construction I’m unfond of) and could understand doctor jargon (this I’m fine with — it’s a skill, not a definition of a person). He told us that on Mondays he had a resident following him around and would we mind if he joined us for the exam?

I’ve had doctors ask this badly before. Often it’s with said resident already present so refusal is an explicit personal rejection and difficult for even a lot of neurotypical folks, never mind those of us with moderate to severe social anxieties. This doctor asked it with the resident on the other side of a closed door. It really actually felt like I could have said no and it would have been okay.

He liked that I had typed up a list of all my surgeries and meds, the dosages, the schedules for taking them, and what they’re for — it’s a long list, twelve prescription meds total — and expressed sympathy that I needed them all. Even though my wife was helping me communicate, he mostly spoke with and to me. Once when he was looking at his notes he missed that I was nodding in response to his question and he apologized for not watching to see my response. When he was working out what labs to order, he noticed what insurance we had and apologized that we couldn’t use the lab in his office but would have to go to the one (not far away) that our insurance company had a contract with or we’d have to pay for the lab work. A DOCTOR. I’ve never run into one that noticed this stuff before, never mind knew what to do with our insurance company.

In short he seemed to be respectful of all the ways I was different: physically impaired, neurologically variant, queer, trans, everything. And genuinely respectful, too, not in that fake-ass “I don’t see the ways people are different from me” bullshit. [Age-based generalization removed by the author.] It was a really nice part of what’s been a string of mostly crappy days.

I’d really rather not have anything endocrinologically jacked up (and given the pattern of other Stuff that has been tested for, I’m not expecting that anything will be very wrong here either). But if I have to have something like that, I’m glad I know who to go to. ‘cos expertise is one thing. Respect like this — on the first time seeing me, on one of my bad days? — is rare. I wish I could drag all the bad doctors I’ve been to and gritted my teeth through seeing to make them watch this young man do brilliantly with a patient who is admittedly not exactly the most conformative person ever and yell “See? This is how you do it! This is how you make all your patients feel like you care about them.”

Cross-posted at Impermanent Records.

A bit of disability humour to brighten your day

When you hear ‘disability’ and ‘joke’ in the same sentence, it’s usually not a good sign. But that’s not always the case.

I thought we could all do with a bit of a laugh and that some of you might enjoy this video. It’s a routine from the very popular Australian comedian and television presenter Adam Hills, who has an artificial leg. Hills doesn’t refer to himself as disabled, but he’s known for talking about disability issues and often having a sign language interpreter at his shows.

Transcript:
I went out with this girl once, we’d been together for a little while, and we got back to her place for the first ever time, and it was that moment of kind of sitting, you know, on the edge of a bed, and she went, ‘ooh, do you want to stay the night,’ and I went, ‘oh, yeah all right.’ She went, ‘Oh, okay, I’ll be back in a second.’ And she walked out of the room. And I sat there going, ‘awww – oh, shit. I haven’t told her. Well now what do I do?’ You know what I mean? Well I can’t wait for her to walk back in and just go, ‘look! [pretending to hold up his prosthetic] It fell off.’ I considered doing a magic trick with a blanket [pretending to flourish a blanket and reveal not having a second leg]. I sat there for ten minutes thinking a) where has she gone for ten minutes? And b) How am I gonna bring this up in conversation? What can she say to which I could naturally respond, ‘really? Well I’ve got one leg!’ [gestures in that direction] I’m not making this up, she came back in the room and went, ‘I’m really sorry, I’ve only got one pillow.’ [pauses for laughter, then repeats gesture] Ta da! She went, ‘ah, that explains it!’ ‘It explains what?’ She said, ‘I spent half an hour at dinner rubbing your foot under the table and you didn’t notice.’

[Cross-posted at Zero at the Bone.]