All posts by Annaham

About Annaham

Annaham (they/them) is a feminist with several disabilities who occasionally updates their personal blog. They currently live in the San Francisco Bay Area with their partner, and an extremely spoiled Yorkie/Pom mix named Sushi. You can reach them by emailing hamdotblog AT gmail dot com. View all posts by Annaham →

Happy post: Winston

11 November, 2010happy posts, small storieshappiness, personal, personal stories, petsAnnaham

[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.

Keeping track

8 November, 2010101, blaming, normality, othering, social attitudesabled privilege, chronic illness, chronic pain conditions, disabled people are scary, fibromyalgia, myths and misconceptions, normal is only one option, pain management, positive thinking, rethinking social norms, social attitudes, this all sounds awfully familiarAnnaham

One of the more bizarre stereotypes (if one can call it that) about people with fibromyalgia is that we obsess over “every little ache and pain,” to the detriment of ourselves and much to the apparent annoyance of the “normal” people around us.

Here’s the thing: If I were to obsess over my pain in the way that “obsessing” is traditionally defined, I would never get a damn thing done. This is why keeping track of my pain levels each day is so important — so I don’t have to obsess over it. It takes five minutes tops to jot down some notes at some point during the day; if that fairly small action equals “obsessing,” I shudder to think what the alternative might be.

I have a pretty full schedule. I go to school full-time (I’m getting my M.A.), and commuting to school via public transit tends to take a lot out of me even though I live somewhat close to campus; this is to say nothing of actually going to class, participating and being fully present in discussion and activities, and getting work and research done outside of class. And then there’s all of the stuff that’s not school-related: spending time with my partner and with family and friends, taking care of my dog, meal preparation, living space upkeep, creative work and hobbies, and other everyday things that are too mundane to list here. All in all, many of these things are par for the course in “mainstream” life. The ability to do all of these things and more in a given day, however, is something that many abled people seem to take for granted. Given my pain issues and the fatigue that comes with them, I have had to make quite a few adjustments as to what I can do and how and when these things get done. Often, I have to make trade-offs when it comes to what gets done or what I can do; depending on my pain levels on any given day, I might have to scale back on what I can do. There are days, too, when I can’t do much at all.

And yet, when some of us do have to keep track of our pain levels, make trade-offs when it comes to getting things done, give ourselves space to recoup, take a day (or a few) off, or acknowledge that, hey, maybe “getting everything (and more!) done” in the ways that most “normal” people are expected to is unrealistic and may actively make our conditions worse, abled culture (and many abled people) shows up to tell us that we’re Doing It Wrong, that we should be doing more, or that we should be spending our already-limited energy on other or “more important” things. You’re not doing enough, quit being lazy. If you really wanted to, you could be involved in real activism/you could get a real job/you could just suck it up and stop bothering everyone by talking about your pain. Ignore your pain and maybe it will go away. Your pain can’t be that bad! By adjusting your life to your health condition, you are letting the pain win. Positive thinking! Willpower! Bootstraps!

I have to wonder why some of the adjustments that I’ve had to make, such as keeping track of my pain levels, and then carefully planning what gets done according to how I am feeling, seems so incredibly threatening to some folks. Perhaps it’s that they want to explain away why they themselves do not have these problems and will (they think) never have to deal with illness, pain or disability firsthand, because they’ve lived their lives “right.” Maybe it’s because people living their lives in ways different than themselves is scary and weird. It could be because many people simply cannot conceptualize living with chronic illness or pain, and so they have to make people who do into an “Other” whose decidedly non-mainstream existences, life experiences and habits cannot be understood, or even given consideration, by those in the mainstream.

While small things like keeping track of pain and fatigue levels may seem incomprehensible or weird to people who are not disabled, these adjustments are very important for some of us. To an outside observer, the five minutes a day that I spend noting my pain levels — and my planning of my day depending on my pain and fatigue levels (what a concept, right?) — may seem totally alien, and like it does nothing to combat the stereotype of people with fibro as a bunch of hysterical middle-class women who are obsessed with their physical pain (hello, sexism!). For me, it’s a survival technique, however small and “alien” to people who don’t live with chronic pain or health issues.

Quoted: Susan Wendell

1 November, 2010Quotationsactivism, disability, feminism, feminist theory, feminist work, gender, parenting, second shift, workAnnaham

Feminist organizations have become more aware of the need to make their activities accessible to women who use wheelchairs, women who need written material in alternative formats, and women who need Sign Language translation, but much feminist practice still assumes a consistently energetic, high-functioning body and mind, and certainly not a body and mind that are impaired by illness. Moreover, in their writing and organizing, most feminists still assume that feminists are giving, and not receiving, care, and that all significant contributions to feminist movements happen in meetings, at public events, and in demonstrations on the streets. The accepted image of a good feminist still includes handling paid work and family responsibilities and having plenty of energy left over for political activity in the evenings or on weekends. In these circumstances, women with chronic illnesses are likely to find it difficult to participate in feminist movements or to identify themselves as feminists.

— From “Unhealthy Disabled: Treating Chronic Illnesses as Disabilities” (originally published in the Fall 2001 issue of Hypatia)

Things That Make My Life/Art Easier: Pens

29 October, 2010comics, creative work, media and pop cultureart, artwork, cartooning, creative work, pens, writingAnnaham

As s.e. wrote about in a post earlier this week, I am a cartoonist in addition to all the other crap that I do. I’ve been drawing (and writing) for most of my life, and finding the perfect pen has been something of a wild turkey-chase with mixed results. I know that an entire post devoted to pens may seem silly, particularly given the more serious things that I have written about here on FWD. Re-reading some of Amanda‘s Things That Make My Life Easier posts has inspired me to write about…well, writing (and drawing) implements, because the right ones do make things easier for me.

I first read about the pain-reducing benefits of felt-tip pens in the second edition of Starlanyl and Copeland’s Fibromyalgia and Chronic Myofascial Pain: A Survival Manual; the authors, both medical professionals, include the use of felt-tip pens in a lengthy list of tips designed to reduce pain on an everyday basis. Felt-tip pens tend to be easier on the hands and joints. My one huge issue with felt-tips, however, is that many of them produce stronger lines than I would like. This is more of a problem when I attempt to use them for artistic purposes, as I don’t mind a little more heft in my hand-written notes and scribbles. I do use felt-tips on occasion in my cartoon work — especially for panel borders and heavy lines — just not very often.

Felt-tips are good for writing, but depending upon what sort of lines you’d like in your artistic works, the ease of use that felt-tips produce may be their only advantage. Obviously, they’re not the greatest for detail work. I tend to shy away from brushes and pens that require the use of an inkwell or a separate bottle of ink, as the gorgeous lines one can produce with those tools so often translates into absolute hell on my hand and wrist joints, plus a lot of repetitive motion from dipping the brush or pen into the ink and bringing it back to the page (which often equals further hell).

Ball-point pens that don’t have a lot of ink “flow,” in my experience, aren’t great for cartooning either, though they can be useful for storyboards and quick sketches. The ball-points that have worked the most effectively for me have been the “business”-type pens that most folks associate with actual business work. Perhaps people in business have to write things quickly and therefore cannot depend on crappy ball-points and/or face the frustration that inevitably arises when said crappy ball-point runs out of ink. Non-crappy ball points, such as the Uni-ball line of products, may be a bit more expensive than “traditional” ball-points, but if you want a smooth line that is not going to translate into extreme wrist or hand pain, a “business” pen of this sort might be for you.

Another pen type with which I have had some success has been actual drawing pens; many brands are available at art-supply stores or bookstores. I have found that experimentation with different types of pens is a good bet, if you’ve got the time for it (and assuming that you are cool with dropping a couple bucks on pens that might be either awesome or a total disaster). The Preppy fountain pen, made by Japan’s JetPens, may be a good bet for people who would like to experiment with fountain pens and the lines that these pens can create, but who may not have the time, energy or inclination to use a more traditional fountain pen (it has a reloadable ink-cartridge system that is very convenient). There is also the Stabilo brand, which I discovered quite by accident in the clearance rack of an art supply store (I bought a couple specifically because they were on sale). I use the Point 88 type because it’s light, comfortable to hold and can do excellent detail work, but your artistic/writing mileage may vary.

There is no “perfect” pen, of course, but there are some damn good ones out there if you’ve got the inclination to experiment.

Heel, toe

21 October, 2010bodies, identity, normalitycerebral palsy, mental health, movement, normality, personal, personal storiesAnnaham

As I’ve mentioned previously, I have fairly mild cerebral palsy that mostly affects the left side of my body, and my left leg and foot in particular.

I’ve had sort of a strange relationship with my left side, and the foot attached. Because my left leg is a few inches shorter than my right one, my left foot has made a bizarre and ongoing effort to make up the difference. While my right foot moves “normally” — that is, when I step with it, the foot goes fairly flat once on the ground — my left foot moves and rests in a manner that is probably better befitting a pointe shoe. My left foot tends to step forward with the ball of the foot and the toes, instead of having a flat gait like the right foot. As a result of my rather odd gait, I have very thick calluses on both the ball of my left foot and all of my left toes — and no callus at all on my left heel.

With the help of physical therapy, I spent much of my childhood and adolescence trying to make my shorter left leg and foot “match” the gait of its twin — even when it physically hurt to do so. [I should point out here that I most definitely do not mean to knock physical therapy as a whole, which has helped me immeasurably and has been helpful to a great many folks!] One advantage of physical therapy was that it made my left leg stronger, and made my balance somewhat better as a result; though my left side’s balance isn’t amazing or superhuman or all caught up with the right at this point in time, it is better than it was previously. Thanks to my existing mental health issues, before I started having chronic pain issues (which directed my focus to other things — namely, how I feel, physically, instead of whether my body parts “look right”) I was pretty used to mentally raking myself over some very hot coals for not being able to make my left leg as “good” as the right.

At some point, I decided to stop making myself feel terrible about the fact that my leg left and foot will probably never match totally with the right side’s leg and foot. Yes, I walk sort of oddly. Sometimes, I can keep my left heel and leg “down” correctly and am able to move them like they should move; sometimes, I can’t do either (particularly during fibro flare-ups). My left leg is still useful, even if it is skinnier and less-developed than my right. My left foot is still awesome, to me, even if it is kind of spastic, tends to stick out at a weird angle and has calluses in all the “wrong” places. Trying to walk “correctly” has been an ongoing process for me, and the fact that I often cannot do it — and can, simultaneously, be okay with that — has been crucially important to self-acceptance. There is no use, after all, in mentally flagellating myself for not fulfilling what I have found to be an unreachable standard.

Imperfections

14 October, 2010bodies, feminism, gender, social attitudesdaily life, disability is a feminist issue, effortless perfection, fibromyalgia, gender, help, medical care, perfectionism, personal, personal stories, rethinking social norms, social attitudes, stereotypes, unexpected obstaclesAnnaham

I am one of those people who often cannot ask for help.

At times, I am so afraid of seeming weak, or whiny, or overly-sensitive, or dependent on other people that I tend to either ignore my own needs until I start flailing around at the last minute in order to not get overwhelmed, or minimize the possibility that some things could be going wrong. I am one of those people who needs to outwardly look like I know what I’m doing and that I have things totally under control — preferably at all times. (Intellectually, I know that this expectation is intensely unrealistic, and can be dangerous; even the most “put-together”-seeming person can be a total wreck in private.)

Part of this is a defense mechanism that I developed around the same time that I started getting made fun of in grade school for my mild cerebral palsy and the limp it caused. Somehow, I figured that if I could be perfect at something — my something being academics — and make it look effortless, other kids would stop making fun of me. This didn’t work out quite the way that I planned; regardless, I still tend to hold onto remnants of this habit.

Part of it is also my own internalization of the cultural ideals that tell people with disabilities that we must always “compensate” for the imperfect status(es) of our bodies or minds, a la the Good Cripple or Supercrip, as well as the cultural messages that tell many women that they must be “perfect” while making it look downright easy, in accordance with the current “ideal” feminine role. A great number of women are told, in ways subtle and not, that we must try to “have it all,” and do it without a drop of sweat showing. We must look good all of the time, we must wear clothes that are “flattering”, we must keep a figure that approximates whatever sort of beauty standards happen to be “in.” We must take care of others’ needs and feelings and make this our number one priority, and think about ourselves last (if at all). We must project an outward appearance of cheeriness, strength, or deference, no matter how we might actually feel. If we cannot do most or all of these things, we have failed. And when this loaded set of expectations intersects with the PWD-compensating-for-disability trope, look the hell out.

These are just a few examples, of course, and these expectations shift in various ways depending upon race, class, ability status, sexuality, gender identification, education, and a host of other factors that are often derided as being remnants of “identity politics.” Identity and its politics, however, still continue to matter.

Here’s where I am going with all of this: For the past few weeks, I have been dealing with newer and more unpleasant fibro symptoms that are starting to affect my day-to-day life. At first, I thought these symptoms were just the result of a bad day, and then a bad week, bad month, et cetera (you can probably guess as to where this leads). I wanted to believe that these symptoms were not a huge deal, and look like I knew how to deal with them until I made it back to “normal,” however tenuous that position is for me. Now that these new and interesting symptoms have become a bigger deal than I had anticipated, a lightbulb has also gone off in my head: I need to work on letting go of this all-or-nothing, but-I-should-always-have-it-together-even-when-I-don’t-and-do-not-need-help mindset.

Today, I finally made the decision to schedule a doctor’s appointment to get help with my new symptoms.

Acknowledging that I don’t have some things completely “together” and that I (gasp) need medical help with these symptoms may be a tiny first step toward changing the tape loop in my brain that tells me that I am on one side of a binary — that I am either a or b, all or nothing, need help with everything or do not ever. There is a middle ground. Until now, I haven’t been able to acknowledge that.

FWD/Forward

FWD (feminists with disabilities) for a way forward