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an AMEN?

Addendum: This chair did break on me over the summer — its weight capacity is fairly low. See here for further product recommendation.

***

This is a total gimme. It’s one of the most helpful aids I have, and it’s also one of the most explicit medical devices, so to speak. I’ll get into the subtler stuff as time goes on.

So: my shower chair.

I have touched on the subject of showering in the past, in passing and in detail. Suffice to say it is extremely taxing for me. I usually aim for a shower every 2-3 days, which means I usually end up showering every 3-5 days when I’m in decent health. I try to time it so I shower once on the weekend, when my husband is available if I am having trouble. Usually I will also shower once mid-week just so that I don’t get uncomfortably stinky, greasy, etc.

I don’t always sit during my shower. And I almost never sit the whole time; if I need to sit the whole time, I probably shouldn’t be showering. But it is a huge help, especially when I am washing my body. That requires turning, reaching, bending, twisting, lifting, and balancing, all while pushing a soapy little puff around my body. It’s easier to reach my feet and not fall down when I’m sitting on a stool vs. leaning over standing on one leg. Shaving, too, is something I usually do sitting down, as the bending and twisting is too awkward and stressful for my lower back.

I also scrub certain parts of my feet and hand with a pumice stone to get rid of dead skin cells, because those spots (heel, bottom of my big toe, and around the cuticles on both fingers and toes) get very dry otherwise. This results in two things: feeding my bad habit of picking at my cuticles, and painful callouses on the feet. That’s too much force being exerted to also use up my energy standing up. This is actually the part of my shower that takes the longest, but it’s also best to do it during my shower, when my skin is softened from the warmth and moisture.

OTOH, I usually stand while I wash and condition my hair. Not enough water pressure to rinse it out when I’m sitting, and the less time I’m applying force with my arms lifted high, the better.

I actually don’t know what it is that makes a shower such an event for me. I can pick out some aspects: the heat (though I can’t tolerate extreme heat anymore), the humidity, the enclosed space? I find it hard to breathe in that setting; is my asthma the reason? I do know that actually doing anything while I’m standing is difficult for me, which is why I tend to avoid washing our dishes (unfortunately for mattw) and almost entirely why I didn’t last long at the cafe job. But it feels like that’s not all of it. I get so shaky after a shower, and weak, and shaky. And shaky. And I don’t do great after washing the dishes, but it’s usually not anything like that.

But you know, I don’t always get shaky and week after my showers anymore. And before I bought this chair, I did.

The reason I don’t just sit on the edge of the tub is: ew. OK, the real reason is that it’s still a serious balancing act. (And if it’s anywhere other than home: it might let a lot of water out, and also, ew.)

I got my chair from Target; it was the cheapest one I could find that looked safe and like it would fit our tub.  There are any number of sites that sell these things, and a quick hop on the Google bus should get you where you’re going. This one isn’t particularly portable — it folds down, yes, but it’s not like I was going to carry it on the Metro so I could have it at my hotel in DC. But it allows it to be stowed neatly in the bedroom closet, which means mattw doesn’t have to deal with it when he’s showering on his own, either.

I seriously took a good week to write this post. I feel pathetic. I’m going back to filing now.

Oh. P.S.: Sign up at Target’s website for their weekly ads before you order from them, and if they allow you to just sign in with your Amazon account, do it. I don’t know which of those two things is what did it, but when I ordered, I got a 10% discount.

Sometimes I read things — the whole of which I may not endorse, but which I still feel merit more attention — to which I have nothing to add. So…

shah8 on historical trends:

One of the things that I have noticed about big F feminism, and this may not be an accurate perception, so feel free to correct me, is that there is a much lower appreciation among women that enlightenment and oppression happens in cycles. Ever greater progression in civil rights is not typically the rule, especially beyond a generation or so.

I was on the T on my way home from a job assessment in Pittsburgh. I’d been shaky all morning, having difficulty breathing, upset tummy, and so on. I wasn’t altogether well.

It was five or so stops from my destination when I decided I had better take a pain killer. I’d popped one when I got to the building, but it wasn’t doing much for me. I couldn’t just wait until I got to my car, because that would be some time, and I had a long drive home and other things to do after that. With fibromyalgia, delaying a pain pill 20 minutes isn’t just a 20 minute delay and then the same relief you’d have if you’d taken it 20 minutes earlier. It means that it will take longer for the pill to kick in when you do take it, and it’s got more pain to kill, and it’s going to be less effective on the whole. Pain builds, so the longer you go without treatment, the worse you are when you get around to it, and the more work it takes to treat it (which makes things worse for you throughout).

So.

I didn’t have a drink. And there wasn’t really any way to get a drink, unless I wanted to waste an hour and a half getting off the next stop, wandering around looking for a restaurant or market, acquiring the drink, making my way back to the stop and waiting for the next trolley. Needless to say that wasn’t going to help my pain state either.

I’ve dry swallowed pills a couple times before. The last time I was fourteen or fifteen, and the memory is vague, but I did it. I mean, it wasn’t pleasant, but it wasn’t bad or anything.

So I pulled my pill case out of my purse. And I started saving up my spit. (Oh, stop gagging, you faker, you’ve done it before.)

My mouth was dry, though — happens from time to time; Sjogren’s, allergies? I don’t know, I’ve never really looked into it. Anyway, you swallow drugs with the spit you’ve got, not the spit you wish you had; I put the pill in my mouth and tried to swallow.

And the spit went down and the pill…. didn’t….

Let me pause to clarify something. This is half a generic Vicodin. It’s fucking huge. And this is no sugar-covered caplet or sweet smooth gelcap. It’s compressed powder with a light seal around the surface. And I don’t know if you’ve ever tasted Vicodin powder, but it’s basically powdered vomit acid.

And it was coating the entire inside of my mouth and throat.

OHGODOHGODOHGOD

I gagged and I heaved and my eyes almost rolled back into my head, I swear it — I spat the soggy pill into my hand and looked at it, trying not to puke. Tears were forming in my eyes. Maybe because I let the spit go down first? I sat there trying to save up more, but I kept swallowing in an attempt to get rid of the awful taste and sawdust texture. (Didn’t work.)

Eventually I held back as much as I could, and I gave it one more go.

And I failed.

I wrapped the pill and stuffed it in my purse and tried to distract myself. It didn’t work.

Of course? The train had to make every. fucking. stop between there and my destination.

It took another twenty or so minutes before I got to my car, and I headed straight to the Wendy’s across the street for a nice long drink. But I was tasting that shit for the rest of the day. At the end of the night when I poured my final glass of water — half to take my bedtime medicine, half to use the next morning for same — I tasted it again.

It’s almost gone now. Almost.

I’m not going to be trying to dry swallow any pills again any time soon.

Quick association test:

In the context of disability, what is the first thing you think of when you hear the words “assistive device”?

I’m going to guess it was a cane. Or a wheelchair.

If the first word to your mind was anything other than those two, and you aren’t already a disability activist, do let me know. I’ll give you a virtual cookie.

So, I thought I’d start this series. I don’t have a snappy name for it yet (not for lack of trying; “the crutch list” is about the best I could come up with) but I wanted to start putting these things out there.

It’s been on my mind recently. Lauredhel has been writing about accessibility and challenging my thoughts on the meaning of that word. Similar to the above quick-think test, I’ve got a virtual cookie for anyone who, hearing talk about making something “accessible,” doesn’t immediately think of wheelchair ramps.

Bear with me.

I have what is called an invisible disability; that is, the fact that I am disabled is not readily apparent. There is no reason for any given bystander to think that I am disabled (and isn’t it telling, really, that there has to be compelling evidence for a person to be considered anything other than fully-abled). Further, my particular disability (fibromyalgia) comes with a heaping case of self-doubt, thanks to the social context surrounding it. What that means is that I typically don’t think of “accessibility” as pertaining in any manner to me. Let me reiterate that, to make my point perfectly clear: I don’t feel like access for people with disabilities is applicable to a person with a disability.

I’ve been taught, in so many words, that accommodation for my particular condition is an unfair burden on the rest of the world, so I shouldn’t even bother asking. If it requires a change in the routines and behaviors of “normal” people, it’s untenable. If there is something I want to do, I had damn well better be able to get it done without any assistance, because it’s too much to ask of greater society to make any meaningful changes for my benefit.

In short, I am to sit on the sidelines and watch as life goes by. If the coach has the good spirit to give me a few minutes on the field, from that moment on, I owe my life to him. And after those few minutes have passed, for the rest of my life, I am to suffer in silence, never to ask for any favor again, lest my status as Grateful Crip be swiftly changed to Selfish Bitch.

I never really thought much of my diagnosis (age 12) for those first few years. OK, I had some difficulty in P.E. but I hardly even recognized that for what it was. My body the day before my formal diagnosis was qualitatively no different than my body the day after, and the same can be said of my self-image. For those first twelve years, I had been a “normal” child, which meant that the experiences I had as that child must also have been “normal” too. I’ve written in passing before about the fact that the pain I felt didn’t register as pain, because, again: I was a normal child, so what I felt must have been normal.

Anyway, following from that attitude: even after that diagnosis, the denial I lived in would not allow me to change what I did, or how I did it, as a result of my condition. In my mind, I was still “normal.” So any adaptation would threaten the image I had of myself — after all, “normal” children don’t hold their pen differently, and “normal” children don’t have to stop and rest when walking long distances, and “normal” children can stand for the entire duration of their shower. Therefore, I should be that way, too.

And I think the weight of my disability was more than I could handle at that age. That’s why I couldn’t let myself accept any change in my life as a result of it. If I did, I would have to confront my condition, face to face, and accept it and all of its ramifications. I think I knew instinctively that that burden was too great for me to knowingly carry, and in all the wisdom of a twelve year old, decided to pretend it didn’t exist while carrying it anyway.

And you know what, I hardly even knew that you could adapt your environment to better assist you in living your everyday life. It’s not as though there is a thriving public dialogue about life with a disability and how to get through it more easily. PWD largely live their day-to-day lives shielded from the public, except for the occasional appearance in Hallmark films and other inspirational kitsch. Society, in general, has little to no concept of what disability means to a person’s life.

So. I was thinking about my twelve-year-old self, and my eighteen-year-old self, and what it would have meant to me to know about so many of the techniques and devices I use now, and to really, deep down feel comfortable using these things, because there is nothing wrong with them, and you don’t have to be embarrassed, and you are not deficient, you are not a failure, you can hold on to your pride even as you use these things. It is not a statement of strength to deliberately refuse any aid. And neither is it a statement of weakness! Your use, or not, of such things is not a statement of spirit or character, period. It’s a method. That’s all. It’s a method. It’s a way of doing things. A way of living life. And God knows, if there is anything I learn in life, it will be that there are multitudinous ways of living a life, and no one of them is better than the other. They just are.

Does it say something about you that you put your left shoe on before your right? That you put your seat belt on before you close the car door? Or that you pull your pants up before you flush the toilet? Does it matter, really, whether you cut your pork chop into little pieces all at once before you start to eat or one by one as you’re eating?

It’s a method. It’s not an embarrassment.

With that said, I’m going to start writing about the products, ideas, and tricks I use to keep my roller coaster ride of life just a little bit smoother. If they help me, they’ll probably help someone else. And, in the meantime, maybe “normal” folks will understand a little bit better what it means to live with a disability. (This disability. My disability.)

Consider this, I guess, sort of like the family recipe box. I’m contributing some tried and true mixes. I figure, maybe other folks will add theirs. And maybe there’s a twelve year old out there who will be helped by it. And that would make me very happy.

(Ed. note: I wrote most of this late at night after a failed attempt at falling asleep, and once this is published I am going straight back to bed. I reserve the right to edit for clarity once I’m able to reread it in the morning. Thanks.)

is when Mitsy woke me this morning by jumping onto the bed and meowing in my face.

Something was obviously wrong. She seemed disoriented. She couldn’t seem to hold herself up; it was like something was weighing down on her. She was heavy in my arms. She wobbled and listed to one side when she’d try to walk. She was twitchy, her eyes weird and her ears tilted back in that distressed way.

Shit.

She was totally fine yesterday. You know how, when a major illness strikes (or some other major event), you can usually remember signs of it in hindsight? I can’t remember anything abnormal. She was eating and drinking and playing like normal all yesterday, and when we went to bed around 11PM last night (husband was up later on the phone with a friend whose father is dying and needed someone to talk to) she was doing her prance-around-on-the-bed-cooing-at-me routine to try to get me to pet her, just like she does every night.

She’s an indoor cat. I searched all over the apartment and couldn’t think of anything toxic she could have gotten into, and there was no vomit anywhere either.

I ended up driving to Wheeling, WV with her, as that’s the nearest emergency vet, but to no avail. I’m going to take her and her brother in to the walk-in clinic here in Washington later this morning because they’re going to be due for their shots here in about another month anyway, and I might as well save the exam fee.

I was freaking out, because I’ve always expected Buddy to take his exit from this world a little earlier than most (he’s got feline leukemia, and I’m honestly amazed he’s stuck around this long) but I’ve always thought Mitsy would be with me for years yet.

I don’t really know how to end this post, so I’m just going to save it now and try to get my body up and functioning after it’s already been through an hour’s drive on about five hours’ sleep. Here’s hoping she’s going to be ok.

“Part of what makes America so beautiful is that there is no such thing as someone who looks like an American.”

You aren’t fooling anybody, sweetie.

It is an inspiring sentiment — something I wish were true. But this is reality, and down here, we recognize the wisdom of the old adage, actions speak louder than words.

America has always claimed to aspire to a just, egalitarian society. Then again, the bruised and broken woman presenting herself to the emergency room has always claimed to only have taken a fall.

The original immigrants from England came from an environment hostile to their religious beliefs, but don’t kid yourself: they intended to establish not a society that recognizes freedom of religious expression for people of any religious persuasion, but a society that recognized the freedom of religious expression for people who subscribed to their particular religion.

The Declaration of Independence did not recognize the fundamental rights and dignity of every person in the country’s bounds: it recognized that “All men are created equal.” Don’t kid yourself: they weren’t using that word as a gender neutral pronoun. And its founders, wealthy white men, held slaves, including black men, feeling no dissonance between their political positioning and their private lives.

Wealthy white Americans continued to hold slaves — who are we kidding? nobody held slaves; they dominated, abused, exploited slaves — for years and years after that; the “War of Northern Aggression” was fought over State’s Rights, that is, the right of states to proudly base their social and economic orders on a system of brutality against black bodies, male and female.

Even after the South was warred into submission, people of color were denied education, voting rights, property (and thus the ability to sustain oneself), bodily autonomy, and the respect and recognition of their fundamental humanity of the (white) people around them. Their welfare was purposefully neglected by the (white) people and their (white) established government. And whenever they had the temerity to advocate for themselves or even just dare to exist in public, they were harassed, attacked, raped, abused, murdered. This happened with the implicit consent of the (white) institution under which they existed.

When a noticeable portion of white America got its fucking head screwed on straight and started fighting to make right these wrongs, the violence was inflamed, and let white America not forget that legal recognition was not pushed through Congress smoothly and pleasantly. Let them also not forget that legal recognition does not translate into social recognition; to this day people of color fight to rise above the contempt their white peers have historically, and largely still currently, show them.

Native Americans were subject to nothing short of genocide from the moment the pigmentationally-challenged set foot on this massive continent. We fought them, hunted them, raped them, mutilated them, ruined their land, drove them west and then followed them there to keep the “rivalry” alive.

And make no mistake, we are equal-opportunity oppressors! We import poor, darker-skinned workers to perform our menial labor, constructing a social and economic order irreparably built upon their underpaid labor, their abuse and exploitation — their enslavement. Our history of genocide and institutionalization of people with disabilities is no secret. I’m not even going to bring up treatment of the trans/queer.

For all our boasting, the United States of America has never been a society dedicated to the respect and recognition of every person, of any class. Never.

Everyone, everyone knows what Chris Matthews means when he invokes the “regular American.” This country was FOUNDED on the privileging of the white, male, heteronormative, able-bodied default person. The Joe Six-Pack with a wife and two kids, who comes home from work every day to watch NASCAR and tosses around a football with his buddies. (Except when they privilege the multiple-vacation-home-owning, country-club-frequenting, Joe High-Class over him. But that is the only alternative.)

When someone speak about a generic American without any further context — or about a generic person without any further context — everybody knows what they visualize. And it doesn’t have tits, it doesn’t use leg braces, it doesn’t have “nappy” hair or “slanted” eyes. They may not be musing on an actual image of a white man, but if you introduced any of those other traits, it would be jarring. It would change the paradigm of thought entirely. We would suddenly be having a totally different conversation.

Everybody understands this. They may not devote any conscious thought to it — but the construct exists in their head. There is such a thing as “someone who looks like an American.” I could point out hundreds of them to you in the middle of our local Wal-Mart Super Center. I don’t think I’d find (m)any in the local mosque, assisted living facility, gay pride parade, homeless shelter…

Consider this: Mr. Obama’s own campaign recently had two women in headscarves removed from visibility in a campaign event.* How can this fit with his statement? What contortions would it require for Senator Obama to reconcile his actions with his words?

As citizens of the United States of America, we all know the importance of monitoring the sexiness of the Presidential nominees. As such, I present to you these photos of Senators John Sidney McCain III and Barack Hussein Obama II:

Yowza.

As an addendum, consider this photograph of Senator Obama, unabashedly courting the Young Women Who Love To See Men Being Shamelessly Goofy With Their Children vote:

Photos from.

Ms. cripchick writes about Independence Day and mentions that her mother and grandmother stay home, “[not] for political reasons—more of not connecting with the holiday or feeling like it’s theirs” and it struck me.

This day to celebrate our country and all its inhabitants — to a good lot of those inhabitants, this day doesn’t feel like it’s theirs. This day is for someone else, not for me.

And the sentiment is pretty widespread when you think about it. It applies to all groups.

To a poor child: college is for someone else, not for me.

To a person living with an abusive partner or family member, who has never seen someone they know personally ever have anything better: respect for my dignity and autonomy is for someone else, not for me.

To the little girl in school: complicated mathetmatics and science are for someone else, not for me.

To the child of color, or child with a visible disability, who sees advertisements everywhere (for toothpaste, for breakfast cereal, for universities, for bank services) with skinny white people with perfect teeth and “good” hair: society in general is made for someone else, not for me.

When we structure our society this way, we may not be saying explicitly, this is Not For You. But those people get the message — loud and clear.