Category Archives: small stories

Constant Vigilance

To quote Harry Potter.

It’s difficult to separate out my life into the disability stuff and what life would be like without it. I don’t remember much of my life beforehand. Something I’ve been aware of for years is how distrustful ableism has made me.

I’ve been primed to be constantly aware of other people’s attitudes. I worry that people I’ve known for years think I’m exaggerating or lying when they ask how I’ve been. The sad thing is that this isn’t an unmerited fear. I have had people turn on me. I’m all too often aware of the need to watch what I say, watch people’s faces, watch my back. Because a rumour might start, or a friend might “forget” my access needs, or someone in a position of power might make life difficult for me. It can go wrong in a split second, and it has.

I’m not the most trusting person in the world in any case, but being disabled in this ableist world has taught me that complacency is something I cannot afford. I can’t expect that people will treat me like a person, and I can’t expect to go outside and not have to worry about accessibility issues all the time. That’s so terribly sad. And this constant vigilance is now so much a part of how I deal with the world, how I go about my day, that I don’t know how I’d go about teasing it out of myself, letting myself relax, even in the event that ableism and inaccessibility suddenly disappeared from society.

[Cross-posted at Zero at the Bone]

For Granted

It’s odd how we sometimes take the habits of our children for granted.

I have a particularly chatty child. I can’t imagine where she gets her penchant for being a non-concise story-teller. Really. I can’t.

But when it is early in the morning and I haven’t had a chance to heave my second cup of coffee into my not-yet-awake face that adorable chattering doesn’t seem so adorable. It grates on my every nerve.

I just want to enjoy my coffee and check up on SRS Blogger BZNS in the quiet of the not-yet-awake-world. Without the repetitive chatter.

Who decided that there should be no volume control? (I really love my kid!) (I do! She’s awesome!)

However, at some point during my working day, I must have decided that not eating lunch or drinking my normal three litres of water seemed like a good idea. Sometime between picking up Kid from school, picking up last minute Thanksgiving groceries, and reassuring my mother that Korea is still outside my window I started to “green out”. I don’t know if you have ever had that experience, but I don’t ever “black out”. I get dizzy, nauseous, and my field of vision tunnels and goes green. When I was Active Duty one of my buddies who was training to go to BUD/S once told me this is a sign of dehydration, but I think it may have been a combination of things.

I couldn’t drive. I couldn’t speak, except in one or two word fragments. I managed to get out “seat…back” and “water”. I managed to communicate to The Guy that I needed water. He laid my seat back and raced back into the store to get me water while I lie there, with my hands numb, feeling trapped in my body. I could barely move, and managed to eek out a few tears as I wondered what had brought this on.

Then Kid patted my head, and instead of panicking, simply asked if I was OK. I managed “talk”, and she did. She simply did. She held my hand, and talked to me natural as could be, telling me stories about her day at school, about the green bean casserole she was going to make. She held my hand and managed to keep me calm with all of that chit-chat that my decaffeinated self can’t put up with some mornings.

As an adult when someone tells me to talk to them to distract them from something I come up with nothing. It is difficult to come up with mundane chatter. Somehow it comes so easy to a child.

Suddenly, that chatter was keeping me there. It was light, and if I had been in the position to think of it, I would have been so proud of her for staying level-headed in the situation. So I am thinking of it right now.

Finally, my water showed up, and twenty minutes later the shaking subsided, my vision cleared, and I was able to pull myself together. Magical thing now and again, water is.

It can’t be easy growing up with a parent with disabilities, because I am certain that there are times in their lives that they have to grow up faster than they would otherwise, and that there might be times that they face disappointments because of certain limitations. I know that for the most part, they grow up like most other kids, but every now and then they have to hold the hand of their parent while they are going through things (like nearly passing out).

I love her and her chatter.

A full night’s sleep

Last night, for the first time in ages, I got a full night’s sleep! This hasn’t happened in months, so I am very pleased! This is just a little spark of joy for me: it’s hardly a pattern yet, and I’ve only been managing to sleep sensible hours a very little bit of late. And I still haven’t felt properly rested in years and years. But it’s something.

It’s a really simple thing, sleep, something really pleasurable. Sinking into warmth and stillness and dreams. It’s something I find terribly difficult, and I feel disappointed every day when I wake up to an instant headache and drowsiness and feeling like I haven’t slept at all. It’s a real struggle to get through a day feeling like that.

And while I still feel like I haven’t slept in a week, this is progress. I may not remember the last time I actually felt rested, really ready to tackle a day, but last night has buoyed my heart up so much. Baby steps.

How do you relate to your own sleeping patterns?

Happy post: Winston

Image shows a small silver and blond Yorkshire Terrier with its two front legs up on a railing in an outdoor setting, its red leash off to the right side. It is photographed from a high angle

[Image description: image shows a small silver and blond Yorkshire Terrier with its two front legs up on a railing in an outdoor setting, its red leash off to the right side. It is photographed from a high angle.]

I’ve been meaning to write this post for a while, and have never quite known how to start it. I’ll start with this: like a lot of PWDs, I have a pet. I’m sure that posting something about one’s beloved dog on what is a strongly political site seems unusual, but as of late I have been reading many dog-related blogs (mostly on Tumblr) and am consistently moved by posts where the submitter talks about their pet and some of the many varied aspects of the human/animal bond.

I have a pretty old (for the breed) Yorkshire Terrier named Winston. While he is not a service dog (he is too ill-behaved to ever serve in that capacity, and I suspect that fibromyalgia is not a condition that qualifies for a service animal!), he makes my life immeasurably better. Oh, he’s kind of a brat, but his general attitude is so completely, bizarrely happy most of the time that I can’t help but smile whenever he’s around. Yorkshire Terriers are supposed to be one of the smarter (albeit louder) small breeds, but Winston is not the brightest bulb around. This is not a bad thing, however — his other personality traits make up for the fact that he can’t do very many tricks (outside of sitting, particularly if food is involved).

Small dogs, in general, may seem like they’re a pain in the ass to take care of, at least to outsiders. Certainly, there are some small dogs with very high energy (I’ve met a few) who need to be walked multiple times per day so that their owners can get some relief from the dogs’ barking or constant need for attention. Fortunately for me, Winston is not one of these. He has a lot of energy, but this is mostly because he sleeps upwards of 10 hours per day. On days when I’m not feeling well and need to lie down or take a nap, Winston is more than happy to hang out. If I am in too much pain to take him on a long walk, he seems perfectly happy with a shorter walk. All things considered, he’s a pretty mellow, fairly agreeable little dog — except for when he sees other dogs, which is very often an occasion for over-excitement, and possibly a lot of barking and/or straining on the leash.

Somewhat hilariously, he also snores. Loudly.

Why am I surprised by this?

To begin, rather pithily: I have had very mixed experiences with medical professionals throughout my life. Some have been fantastic. Some have been middle-of-the-road. And, as you might expect to hear from a person with a chronic pain condition, some have been absolutely awful.

Recently, I had a fantastic experience in a consultation with the oral surgeon who will be — at the time of this writing — removing the three wisdom teeth that I have in my skull [note: by the time this post is up, I will be recovering from the surgery and therefore on a bit of a break from blogularly goings-on]. Given my past experiences with medical professionals, I was not optimistic going into the consultation. I have a pretty spotty history when it comes to dental sensitivity, have been labeled an “anxious” patient in the past because of said sensitivity issues, and thus have a mountain of concerns about surgical procedures because of the medical conditions that I already have — cerebral palsy and fibromyalgia among them.  I was fully expecting that the surgeon would either minimize and perhaps outright dismiss my concerns during this appointment; worse, he might actively resist giving me anything other than over-the-counter pain medications for what is known as being a very painful procedure, as fibromyalgia patients seem to have a reputation as being “drug-seeking” among some people in the medical community and in the popular imagination at large (to say nothing of the ridiculousness of getting one’s wisdom teeth removed as a method of obtaining prescription drugs).

Interestingly, this was one of those times where I would be happy to be wrong. The oral surgeon not only explained the actual procedure to me in great detail, but listened very patiently to my concerns about possible issues due to increased pain (possibly relating to fibro, as it tends to flare up after any medical procedure that involves high doses of medication that I do not normally take) and muscle spasms (that would be the cerebral palsy, which has left me with muscular weakness on the left side of my body and occasional spasm attacks in my left leg). He also asked many questions about both the fibro and the CP, and reassured me that he and his staff would watch for things relating to each condition that could possibly occur during and after the procedure.

This consultation — and the oral surgeon’s taking my concerns so seriously — was a welcome break from the fighting-an-uphill-battle-with-my-bare-hands sort of feeling that I’ve gotten from some past medical and health-related consultations. I am, of course, of the opinion that these sorts of positive experiences should not be this unusual, and that they apparently are so unusual gives me pause for a myriad of reasons.

Yes, I have a limp, and no, it’s not really any of your business

I have dealt with disability, in various capacities, for my entire life — this started when I was born three months prematurely and was affected by cerebral palsy (left hemiplegia, if anyone really wants to know) as a result.

I know what you might be thinking: You cannot possibly have CP, Annaham! CP is always severe.  It’s always noticeable to people other than the person who has the condition. CP always sticks out, blah blah blah, insert other sundry stereotypes about CP here (because there seem to be a lot of them).

And you’d be partially right, sort of like how my left leg is partially paralyzed. Oh, people notice my limp. Sometimes, they even point it out to me or concernedly ask about it, as if I am too stupid to notice that one of my legs is too short and that my left foot constantly makes a valiant effort to make up that difference:

“Are you okay? You’re limping.”

“You have a limp.”

“What’s wrong with your foot?”

“Why do you have a limp?”

Now, since I have no obligation to a.) respond, b.) educate these potentially well-meaning folks about my condition, or c.) give a shit, I have developed a coping strategy that works best for me, and it is to ignore these people and/or pretend like they might be talking to someone else. Surprisingly, it usually works, particularly when I do not care about seeming rude.

I don’t know what it is about certain bodies and the fact that some people feel entitled to treat said bodies as if they are public property. This body-as-public-property trope is commonly wielded at people with bodies that, through no fault of theirs, don’t fit the expected “norm” and who may be marginalized because of it: women, non-white people, fat people, trans and genderqueer people, people with disabilities, and others. And woe betide you if you fit more than one — or even several — of these non-normative categories, because then people might feel really entitled to comment on your body or its workings (or non-workings), if these things are at all apparent. In my fairly limited experience, it seems as though certain bodies and their parts constitute some sort of threat to an established order (in my case, this would be the abled order in which “normal” legs or feet do not have limps) that needs to be constantly pointed out and then monitored for the person’s “own good,” whether they are fat, disabled, unexpectedly gendered or not-gendered, or otherwise.

It seems vaguely panopticon-ish, and more than a tad creepily paternal: Hey, she has a limp, but she must not know it! We need to tell her for her own good, so that she knows and can maybe work on correcting it. No matter what the person’s intentions are (because these intentions may be sort of twisted “good samaritan” intentions), that’s the subtextual message that I get when somebody decides to inform me about my limp. Regardless of intentions, this sort of monitoring mostly ends up looking creepy and awkward for all involved. Some “good samaritan” may want to focus on my limp and how out-of-place or weird it looks, but just because I am out in public — limp and all — does not make the way that I move around (when I am not in too much pain to move, that is) any random stranger’s business.

A conversation

Recently, I was on the commuter train home. I happened to be reading Susan Schweik’s book Ugly Laws: Disability in Public for a research paper. Two middle-aged women sat down opposite me, and one inquired as to what book I was reading.

Me: It’s a book about 20th-century ugly laws in the U.S.

Woman #1: What’re those?

Me: Oh, they were regulations that prevented people with visible disabilities from panhandling in public, but more generally, they also kept people with disabilities out of the public eye.

Woman #2: Wow, that is so interesting! Are you in school?

Me: Yes, I’m reading this for a grad school paper.

Woman #1: You’re lucky you’re in grad school! The great thing about being in school is that you get to learn about things you might otherwise never learn about.

Me: Yeah, I suppose so.

Woman #1: And…why are you interested in that topic?

Me: I’m interested in feminist theory and disability, and how those things intersect with race, gender and class, and other stuff. That’s the short version, anyway.

Woman #1 [After a long pause]: Of course, I didn’t mean to imply that you are disabled or have a deformity

Me: Uh, okay. [Pause] You can’t see it, but I do have chronic pain.

And the conversation sort of stopped after that. For some reason, I suspect that this is not an uncommon occurrence.

Why History?

The committee approved my thesis proposal (and I passed my French Proficiency Exam – necessary for Canadianists) and thus I’m now at the stage of my MA where I’m researching, reading secondary sources, and writing stuff up.

[When I lay it out like that it looks so sad and boring. This is the bit where I get to do what I want, in the archives! Looking at letters and school records! I get to apply theories and see if they work, and maybe even develop my own! This is totally my idea of how to have a fun summer! Also, the archives are air-conditioned, which helps.]

My particular project is focusing on the development of residential schools for blind and deaf children and youths. I’m looking at how and why they were founded, what their teaching methods were, and who they hired to work there. I’m also looking at the types of jobs that these children were trained for, and what that says about the way disabled children were perceived by society at large in Nineteenth Century Canada.

I’m also wondering exactly how many blind piano tuners and deaf printing-press operators the province of Nova Scotia thought it could support.

I’ve written before that the history I do is explicitly political. It’s partly about a part of our past that is highly neglected, and partly about arguing, simply by doing it, that this history is important, that it has long-term consequences that we’re still feeling.

But I also write it because people with disabilities have a past, a present, and a future. Because we’re important enough that having a history that’s not just focused on a few Great Examples – Helen Keller, Louise Braille, Beethoven, Terry Fox – isn’t enough. Because knowing how things turned out in the past might give us some insight into how things might be in the future.

Another reason I’m doing this is because it challenges people, and asks them to think.

Every time I tell people I’m doing disability history, “centering the experiences of people with disabilities in the historic narrative”, they are taken aback. They’re surprised. Just by doing history in my department, and telling people how awesome my research is, I’m making more of them think about disability, and about people with disabilities. Without ever having a conversation about language, people in my department have stopped referring to people doing unthinkable things as “mentally insane”. Without my ever leading a classroom discussion about theory and frameworks, my classmates discussed the assumptions about disability presented in several of the readings we did.

These are small things. If I’m lucky, I’ve made 30 to 40 people reconsider their ideas of disability and think about people with disabilities in the past.

And yet, these small things are so satisfying.

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

I can’t count on anybody to understand. (Blogging Against Disablism Day 2010)

(Cross-posted at three rivers fog. See more BADD 2010 at Goldfish’s blog.)

I’m pretty open about my health issues. To be honest, I don’t know any other way to be. I know how to strategically hide my disabilities from strangers in passing interactions, but from the people with whom I interact on a daily basis? Given my appearance — tall, slim, young white girl, pretty enough, clean and conventionally dressed, perfectly middle-class — you’d think it would be easy to keep from communicating variant health, while in reality it is highly tasking. It takes energy to mask my medication-taking, body-resting, trigger-avoiding, activity-budgeting ways from the people around me, and I’m already running an energy deficit just to be around them in the first place.

So fuck it. I don’t hide it when I have to down a pill. If pain, fatigue, or cognitive issues are preventing me from doing something — a task requiring me to stand up or walk somewhere when my back pain is flaring up; speaking with anyone by telephone when my head is throbbing and my brain is not processing full sentences — I say so. I’ve stopped bothering to tuck in my TENS wires to make them completely invisible. When people ask me about the Penguins game last night, the response they hear begins with a mention of my 8:30 bedtime.

There are drawbacks to this. Sharing or not sharing information about one’s health is an extremely fraught decision; some people consider this information rude and gross (even when the actual content is totally innocuous), it can invite unwanted questions and speculation, and there are people who will use your undisguised behavior or the information you have volunteered against you in the future. It amounts to a choice between a life of concealment, which can quickly drain a person’s spirit and often aggravate their actual condition — and a life of vulnerability, never knowing what will be held against you, or by whom. Continue reading I can’t count on anybody to understand. (Blogging Against Disablism Day 2010)