Wednesday, July 15, 2015

Shaving made easy for spoonies

Attention ladies who choose to shave – and anyone who may or may not identify as a lady but who prefers to use shaving products marketed to ladies – I have to tell you about this razor I found that makes the whole process faster and easier than I thought it could be for me.

Now, I’ve got my gaggle of diagnoses and the effects of them can vary from day to day. I prefer to shave my underarms all the time and occasionally to shave my legs (having it hurt when the hair moves on your clothing is some decent impetus to remove said hair). But having energy levels and spoon supplies that range from non-existent to middling most days means that managing a can of shaving cream or body wash lather for shaving purposes is often just one step too many in a hygiene routine.

Enter my new favorite find.


This, my friends, is one of the Gillette Venus built-in shave gel razors. There’s no need for shaving cream with this, and it gives me as close and comfortable a shave as I’ve ever had. Even on my low spoons days, if I have the energy to get in the shower, I can have the energy to shave at least my underarms since this is no more involved than the process of washing them. Get the razor & the skin wet, shave, no interim steps; there’s no fumbling with caps, variable weight bottles or cans, no buttons to try and press down just the right amount.

On days when I have the spoons to shave my legs, these reduce the cost of that action by at least half, if not more. I still have to bend to reach different spots on my legs, but I only have to do it once and I don’t have to struggle to keep my leg out of the path of water between prepping to shave and the actual touch of the razor. I don’t have to go over the same area repeatedly if I put too much shaving cream on – because no shaving cream!

These are a little more expensive than the razors without the built in gel bars, but you don’t have to buy shaving cream anymore, so it evens out pretty well. I do caution that you need to store this outside the shower whatever the package says, because too much constant moisture will wear down the gel bars, but that just means you put the storage hook just outside the shower curtain/door where you can still reach it from inside the shower.

These razors are light and well balanced, keeping me from feeling strain in my hands and wrists, even on  my bad days. The gel bar doesn’t leave my skin feeling dry or itchy, and when properly stored, the gel bars last a good length of time; I usually find the gel bar is almost gone about the time the razor itself needs changed because of dullness.

If you want to check these out before you dive in completely, there are disposable versions available. I tend to stick to the 3 blade types, but if you want an even closer shave or you want longer between shaves, there are a couple types with 5 blades.

This is not a paid advertisement; I genuinely find these razors to be the best thing I’ve found for trying to shave while dealing with multiple complicating medical factors.

Saturday, November 08, 2014

How would you describe a healthy romantic relationship?

I was just asked how I would describe a healthy romantic relationship. taimproblem doesn't ask me any easy questions, now does he?

There are people who think romantic relationships are an entirely different animal from friendships; that the two cannot coexist with one another. This is a thing that proponents of the 'ladder theory' ascribe to - that you are either friend material or relationship material, not both. I think that's bullshit, personally. Friendship is the very foundation of relationships, to me. Without it, sure it may be POSSIBLE to build a romantic relationship, but it's gonna be mighty rickety and unstable.

There are people who think romantic relationships - the good ones - are all about finding 'that person that completes you'. As if. As if you are a partial being; 50% of a whole before you cleave to another person. If that were the case, every ending would leave you torn and bleeding out. It may feel so, but you will heal. You will not die from lack of another, however much you may wish you would for a time after the end. No, a really good relationship isn't about finding 'your other half' but finding another whole person that, when their 100% is added to your 100%, makes the two of you more than 200%. There are many perfectly fine relationships that 100 + 100 = 200, and that is fine, but to me, the best ones are always more than that. And never, never settle for a relationship in which 100 + 100 < 200. Either you are losing part of yourself in the process, or they are, and neither are good.

In my experience - both personally lived and vicariously observed - a healthy romantic relationship starts with friendship and trust and respect. If you don't trust them, all the love in the world won't let you relax into their arms completely; you'll always be looking for the cliff, the knife, or the betrayal. If you don't respect them, how can you value their opinions - including those about yourself and how they feel about you? It all works the other way around, as well. If they don't trust and respect you, how can a relationship possibly exist in any meaningful way?

Friendship, trust, and respect. There's your base. But there are plenty of friends that you can trust and whom you respect but for whom there is no romantic attachment, so what else? This part gets murkier. Everyone seems to have different opinions on what should or should not be considered, but I'll give you my particular view on it here.

I can tell that I'm 'in love' with someone in a romantic way via a bit of a macabre fantasizing. You recall how I said you wouldn't die from an ending, but that you might wish you would? I know that I do, and that's my test. When I think I've 'fallen' for someone, I take some time to think about what it would feel like if they suddenly died. If, for some reason, they were laid out before me and I knew that I would never again feel their arms around me again, never again feel their breath against my neck while we were cuddling, never again hear their voice saying my name - how would I react? In every case where I've really been in love with someone and had strong romantic feelings for them, my reaction is immediate tears and a feeling of tearing pain in my heart.

Romantic love is very much like friendship love, but more so. I trust my dearest friends; I trust them with my heart, my mind, my fortune. My beloveds I trust with my body and with my life. I may be perfectly okay with random cuddles with close friends, but I don't expect it. With romantic partners, I expect cuddling and physical intimacy as a matter of course. To be clear, I am NOT talking about sexual intimacy here. I'm talking about the fleeting hand on the shoulder as you pass by the chair the other is sitting in; the kiss pressed to top of the head as you pass in the hallway; the casual leaning against one another while watching a movie. All of these things could be absolutely okay in a strictly-friends sort of relationship, but they're not as likely to be expected parts of everyday interaction.

My friends all know about my health conditions, including most of the ways they might need to step in should things go south. My romantic partners must know all the ins and outs of my health and how they must step in when I cannot advocate for myself. Even the people I'm closest to (but not romantically entangled with) don't know everything about what is going on in my life - there are just some physical things that you don't want to share with someone unless there is a particular level of intimacy shared between you already. When I finish a shower and my blood pressure is bottoming out and my heart rate is skyrocketing, I'm shaky and pale and parts of me are turning funny colors. My friends may know that this happens, but only people that I've got a higher level of physical intimacy with are going to see me sitting on the side of the tub, clutching the wall as I try not to pass out when they bring me a glass of cold water and sit there to watch me until I'm steady again.

So this all details what I think is part of a romantic relationship, but what makes it a healthy one?

It goes back to that same base again. Are you friends? That is, no kidding, a question to ask periodically. I've had a romantic relationship last longer than the friendship it was based on, and it was not a healthy relationship anymore once I realized I wouldn't be friends with this person if we met then. Do you have enough in common to bond over? Enough difference that you aren't stepping all over each other constantly? Do you respect each other? Not just respect each other as people, but - on the whole - respect their decisions, actions, and dreams? You don't have to agree with them all, but you should at least respect their ability to make these choices for themselves. Do you trust each other? Do you trust them not to hurt you? Do you trust them to stand up for you when you can't stand up for yourself?

That is the heart of romantic relationships, for me. Love, certainly, but without a solid base of friendship, trust, and respect, the love doesn't carry you very far.

Wednesday, March 19, 2014

An ACA (and Medicare) success story

I've been disabled for several years now - closing in on the 10 year mark, come to think of it. I've had Medicare for the duration and, for much of the time, have dual qualified for state Medicaid - the combination of the two making me eligible for Special Needs Plans with insurance companies. Basically, I could have kept the Medicare and Medicaid, and had to do a lot more oversight on the billing of my claims, and not had dental and vision, or I could choose to take an HMO plan with a private insurance company and let them handle most of the work + give me more benefits than the federal and state plans would on their own.

Seemed like a good option, so I've done that and it's worked out pretty well for me.

When I attempted to reenter the workforce a few years back, I lost that dual eligibility for awhile, and regained it when I was no longer working. At least, I regained it for a year. Going back to work made it so my Social Security payments increased ('cause I spent a year paying more into the system - that's how this stuff works, you get back money in relation to how much you've paid in over your lifetime working), and that increase took me just above the cut off line for dual eligibility.

Well, crap. Time to find new insurance, since I have a lot of medical expenses and basic Medicare a) doesn't cover medications unless you buy a part D plan and b) only covers 80% of costs, which will bankrupt me if I have to pay the 20% on things like, say, IVIG treatments ($40,000 each x 20% = $8,000 out of pocket for each treatment). But hey, my husband works and I could go on his insurance, right?

Theoretically, yes.

Except, this is his first week at a new job (close to home! better hours! full time status! yay good things!) and that meant his insurance had to change, too. No problem, we'll both use the insurance at the new place, it'll be fine.

Oh. The insurance at the new job is terrible. Crap again.

Okay, it's not objectively terrible, but it's terrible for us. It is probably a really good plan for people who are generally healthy and don't require a lot of specialist medical care. I have a ridiculous amount of doctor appointments on a routine basis, 10+ medications to fill a month, intermittent IV treatments that are very expensive, and monthly lab work to see if I need the treatment that month. My husband has a few medications he takes routinely and which require monitoring by a physician, and needs to see a specialist every now and then, himself.

If we took the insurance through his job, it would be $163/2 wk pay period, or $326/month, for coverage that largely wouldn't start covering anything until after the deductible was met, and even then might still be only 80-90% covered. On top of that, there are copays that don't even apply to the deductible. For a generally healthy person, this wouldn't be an objectively bad option -- indeed, it'd be better than most of the plans on the Insurance Exchange. But again, not good for us.

So I started researching. I figured that if I could find something better for even $100+ more a month, it'd be better than taking coverage that didn't fit our needs.

Turns out, people with chronic illnesses and disabilities are pretty much going to get screwed when it comes to finding insurance that covers all the things they need, as much as they need, and for the doctors they need. When I was looking for options for my needs, I wasn't finding much. But then I realized that I wasn't constrained to just the Insurance Exchange because of my eligibility for Medicare.

Ah! Medicare Advantage plans - perfect! There are ones that have a $0 premium, but don't include prescriptions, up to plans that have just about everything you could need for a substantially bigger monthly premium. I ended up finding one that is with my current insurance company, and covers basically all the same things just with the addition of some copays that my SNP insurance doesn't have, and won't require any change in my doctors. (I live in Pittsburgh, and Highmark and UPMC are still duking it out over which insurance will be accepted at which hospital system - I've got doctors at only 1 of the two, so I don't want to risk getting a plan with the other company and having it go badly for me.) My premium per month? A whopping $2.60, so $31.20 per year.

Excellent, that covers me, but what about my husband? He doesn't have the same needs I do, but he still needs a better insurance plan than his job is offering. Back to the Insurance Exchange I went.

With my needs taken care of, I realized that what I'd budgeted for insurance (that $326/month that his employer-offered plan would cost for both of us) now offered me a lot of leeway when it came to getting a plan for 1 adult. I dropped the bronze and silver plans off the results and kept the gold and platinum plans. Surprise surprise, I found a gold level plan that was far better for my husband's needs than the plan he would get through his employer, and that would still keep our costs down. The cost for just him through his employer would be $136/month, but for coverage that wouldn't fit what he needed. The plan I found on fits basically every need he has, keeps routine costs low with copays instead of coinsurance or 20%-after-deductible amounts, and covers all the doctors he sees or might need to see. It is in the other insurance/hospital system, but he doesn't have any doctors in the system that I do, so there's no reason that he has to stay there.

The cost per month for this awesome plan? $197/month, or $2,364 per year.

We'll get truly excellent dental and vision coverage through his employer (go figure), and our health insurances privately and separately through Medicare Advantage and the HIE, and our total cost per month will be $240.50, or $2,886 per year.

If we went with the employer plan, it would be $326/month, or $3,912 a year. This means we're saving an average of $85.50 a month or $1,026 a year in insurance costs. I was fully ready to pay more per month for better insurance, and instead we're saving money. That's a whole lot of win, in my book. I have better insurance and a better cost, on account of being legally declared disabled, but the HIE made it possible to find insurance for my husband that wouldn't have been available to him before the ACA took effect - and even if it was available, preexisting conditions would have barred him from it! Also, please note that all prices here reflect no tax credit - because my husband's job offers at least a bronze equivalent plan, we don't qualify for assistance.

If you don't have insurance, you've got about a week and a half to check out and see what you can get for yourself. Please, take a look and see if you can be as pleasantly surprised as I was.

Wednesday, July 24, 2013

Reclaiming my talky-blog

I’ve managed to, more or less, keep my specialty blog (Grateful Little Victories) going for over a year, but sometimes I want to say more than just what I put on a notecard. Every time I think about that, I remember my old blog, and consider fixing it up and using it again. Overnight, I did just that.

This won’t be a strictly updated blog, and it won’t be strict to a specific format or topic. This is where I will put things I have thoughts about, regardless of what those things are – could be faith and religion talk, could be disability discussion, might be politics, or somewhere in the middle of all of the above. Or rather, it will be one of the places I put things I have thoughts about. My most personal stuff will still be on my LiveJournal, my bite size thoughts will still be on Twitter, and the majority of my fandom-flail (and endless amounts of emergency cute) will exist on Tumblr. Many things that exist here will also exist on LiveJournal or Tumblr, so if you already follow me there, you’re probably okay. No promises about always mirroring posts, but it’s likely to be the norm.

I’ve copied over the talky-blog bits I’ve written in the last 7 or 8 months, and it totals 5 posts so far. Everything prior to December 2012 is ‘old blog’ stuff, and is now tagged ‘archived’ as it is the archive of what was here before I rebooted the blog. There wasn’t much, granted, but I wanted a fresh-ish start.

Saturday, July 20, 2013

My thoughts on faith, science, and death & dying

Damh the Bard presents Druidcast, episode 76


As so often happens, I love this month's Druidcast. As per usual, Dave puts together an excellent intermixing of music and pagan lecture in the monthly podcast, but this month's lecture really got to me in particular. Kristoffer Hughes is a speaker that I dearly love listening to whenever he is featured on Druidcast, and this was no exception. The topic - pagan ways of handling death and dying - was a heavy one, to be sure. But some of the things Kris says through the talk really got to me on more than just a mystical woo-woo level. He managed to put into words the connection I feel between my scientific mind and my spiritual heart.

For example, one of the points he brings up late in the talk is the fact that carbon is formed in the heart of a dying star, and that we are all made up of a load of it. And what magic that is, to know that what our bodies are made of was made by the universe.

We live on a planet that revolves around a burning nuclear fusion. Every single carbon molecule in your body is a product of death. It came from the belly of a dying star, and it's finite. There is only a finite amount of carbon in our universe, and a load of it is in your body right now. Magic. Pure, utter magic. And I love the fact that we're surrounded by - whatever we see, wherever we look - it's magic. And you're a product of that. And when we embrace that, I would challenge you: burn brighter. Bring more color into this world, because you come with a huge, whopping responsibility: the ability to respond to the fact that you, every single one of you, is the universe singing in praise of itself.

It reminds me very much of one of my favorite Carl Sagan quotes,

Some part of our being knows this is where we came from. We long to return. And we can. Because the cosmos is also within us. We're made of star-stuff. We are a way for the cosmos to know itself.

This is a great illustration of what I try to explain to people when they express surprise that I am both very scientifically-oriented, and also intensely religious: just because I can explain something in scientific terms and both understand and believe the explanation to be true, it does not follow that I cannot nor need not find a deep spiritual truth - and yes, magic - in the same experience. Faith and magic are not ways to fill in the gaps that exist in current scientific explanation - they are an adjunct way of understanding, existing at the same time, and with the same value to me.

When my mother died, coming up on 10 years ago now, I side-stepped my grief for a year. I didn't have time to grieve, after the initial week and change I had off from work, because I knew it would incapacitate me. I was a nurse, I knew what death was, why things had happened as they did, and I was the one to make the call about not engaging in 'heroic measures' at the end. I should be able to deal with it rationally, shouldn't I? Only I couldn't. When I finally let my grief out, finally honored the relationship as Kris says in the talk, it wasn't with my rational nurse-brain self, it was with my intensely spiritual self. I cried, I prayed, I sang, I screamed. When I dealt with death, it was as a pagan. That's what I needed then. The scientific brain did not offer me the comfort I so desperately needed to come to terms with my mother's passing, but my spiritual, pagan heart did.

Sunday, June 30, 2013

Teach young women in sf/f that they CAN protest

There is a lot of talk online right now about women being sexually harassed at conventions - a lot of thoughtful, important talk. These people talk about it far more eloquently than I would, so please, read the following links. Scalzi, Jim C. Hines, and Seanan McGuire all include the text of Elise Matthesen's account of being sexually harassed as WisCon and her subsequent journey through the formal reporting process.


Laura Anne Gilman

Maria Dahvana Headley

Cherie Priest

Cat Kimbriel

Amy McNally

Jim C. Hines

Seanan McGuire

At 17, at my very first convention (Duckon, 1998), I had people making inappropriate sexual advances, some of it probably qualifying as harassment - I didn't realize at the time, as I was in a new environment, with new people, new modes of communication, and I just didn't know what to expect. I was with people I knew all weekend, however, so anything that happened was relatively low-key. (Remarkably effective, having your god father standing behind you to stare daggers at anyone who looks too long at your chest, really.)

The next year, I was at the convention alone and I know I was sexually harassed. An older man had been flirting with me all night (this being the time in my life when I felt you didn't need to sleep at conventions, so I just stayed up for 3 days, wandering the halls at night), and after deciding I was done dealing with him and turning to leave, he stepped up behind me, pressed against me, grabbed my shoulders, and leaned in to (presumably) whisper sexy things in my ear. I stiffened, tossed my head back a little (didn't hit him - too small a movement), and said, "Let go of me." He did so, but didn't move, so I did. He muttered, "Sorry" and I walked away. He carefully didn't come near me again that weekend, and actually hasn't talked to me since. He sees me, obviously recognizes me, but never approaches me. I wish all harassers behaved so after being told off. (Incidentally, this same guy was the reason it took me some years before I agreed to go to a Poly Party at a con - he was the first to invite me to one, and he made it sound like I was being invited to an orgy, not a party with food and socializing.)

At 18, alone at Duckon, I didn't even know what Security was, let alone that I could go there to report something like being sexually harassed. I've been going to conventions for 15 years now, and I've got a better idea of what each department is, and when it is appropriate to contact them. I didn't have people around me that second year, and I hadn't gotten any 'social inoculation' from my friends the first year, so I was extra vulnerable to creeps. Now, I actively try to inoculate my friends and be a buffer for them at conventions. If something happened to me now like what happened at 18, I would know to find a member of Security to report it. Whether that would be my first instinct or not, I don't know. I hope so.

Edit: As Amy McNally pointed out to me, there are a couple of excellent additions to the above list of links. Maria Dahvana Headley posted a follow-up entry on how not to be a creeper, and Ursula Vernon posted a third-party account of convention harassment and what YOU can do if you witness things happening to other people.

Monday, May 06, 2013

In response to Dr. Rob

A Letter to Patients with Chronic Disease

It is frustrating to have medical providers not understand my chronic conditions, not know how they interact with other problems, and not grasp the gravity of certain things happening to me that might be No Big Deal for patients without my particular problem list.

That said, I'm inclined to be lenient. Maybe it's my background as a nurse influencing things, but I don't expect people to be constant walking encyclopedias of information about every possible condition. My doctors do pretty well with common conditions like arthritis and fibro and asthma, but when it comes to things like EDS? When I first walk in, a small minority have ever even heard of the disease, let alone treated one or more patients with it. I sigh a little, then start politely educating them about the condition, offering places online they can find out more, etc. Generally by the 2nd or 3rd visit, they've got a decent handle on things, at least in theory - generally takes a bit longer for it to really gel in practice, as they treat me and see the way EDS affects my life.

I've seen a bunch of negative comments on Tumblr and on the original article about, "Oh, they just want us to stroke doctors' egos!" but I really don't think that's it. I think the major point being made wasn't that doctors need special treatment, their egos stroked, or us to be quiet little patients that do as we're told, but more that doctors are people too. Ditto nurses, techs, etc.

People are scared of the unknown, particularly when the unknown could result in them unintentionally hurting someone else. People don't like to be reminded of how fallible they are, of how much they DON'T know. And people especially don't want to be confronted with how much they don't know in an angry, rude, or confrontational way.

Now, if I see a doctor multiple times, and that doctor doesn't make any attempt to learn about my conditions, or makes assumptions based on incomplete information and as a result makes bad decisions regarding my care, I am not going to keep quiet. That indicates to me that the doctor doesn't care enough to learn more than they already know, and I don't want to be treated by someone who doesn't care enough to learn. But the first visit or two? I give them some leeway, because they don't know me, they may never have seen someone with my condition before, and hey, maybe they will listen and then go get more information. If not, well, someone else can have them.

Tuesday, January 08, 2013

A rant about listening to your patients and being respectful

I have Ehlers-Danlos syndrome.

I also have IgG deficiency.

This means I need to have regular blood work drawn to check my levels (so that I only get IVIG when necessary). But, the EDS makes it damn difficult to get a good vein stick. My record is currently 15 sticks before a good one to get blood/insert an IV. Several people get regular blood draws in 1 stick, generally if they're careful and confident. I average 2-3 sticks for each blood draw, however.

I know my body's quirks, honest. I've been in it for 30+ years, getting stuck for blood work/IVs regularly for the last 20+ years. I know where my best veins are, what tricks work the best to get them to cooperate, and what things are most likely to make them blow out/collapse. Those people who get me in 1 stick? They generally listen to me when I tell them these things.

I went in to have my blood drawn for a check of my IgG levels prior to my office visit this week, and it took 4 nurses and 7 sticks to get just barely enough blood for a CBC and IgG level. Those 7 sticks? They didn't actually upset me, in themselves - as I kept explaining to the nurses, I don't get mad when people have to stick me multiple times (that's just a fact of my life), only when they don't listen to me. After today, however, I've got a few more things that make me angry.

Nurse #1 went for the vein I told her to, but she was not very skilled and spent several minutes digging around with the needle before finally blowing the vein out. As she was doing so, she kept saying, "I keep asking the Lord God to guide my hand, but He's just not listening." -- No. Just don't even don't do that. I really get faith, I do. But there are these things called skill and competence in your job that I'd rather you have first. If you don't feel you have the skill to do what you need to do, and God needs to intervene, please find me someone else. And if you feel the need to pray while you're drawing my blood, please keep it to yourself.

Nurse #2 was the nurse who got my IV in the first time I came in for a treatment - she the one they call whenever they have a 'difficult stick' in the treatment area - and I recognized her when she came into the lab area. She tried to tell #1 where to stick for the best results on me, offered to do it herself, but #1 decided to try again while #2 watched. #1 kept apologizing for every little thing. For hurting me, for sticking me more than once, etc. I kept reassuring her that it was fine, that this is part of being me, that I wasn't in that much pain.

And then she started the repeated apology that got under my skin. "I'm so sorry - this really isn't normal! I normally get even difficult ones in 2 sticks!"

Really? I've told you over and over that this is normal for me. Guess what. I'm your patient, and this is normal for me - that make it your new normal. Adapt. And while you're at it, please stop pointing what a freak I am every other sentence. I know I'm not normal in a whole host of ways, medically, but when I say that something is common for me and you reply that it's really not normal, it's not great for my feelings of self-worth.

#2 tried the same vein as #1 first tried (why would anyone think it's a good idea to go after the same vein someone has already blown out?), and got a flash of blood, but no flow as it blew out in a second spot. Good job. Then she tried the OTHER vein #1 had tried, though I doubt #1 had hit that one. #2 didn't hit it at all, either. "It's like it just keeps disappearing. I can feel it, then it just goes away." I told her that my mother had problems with vacutainers collapsing her veins, and that it may be that I'm developing the same issue. She opted to go get another nurse.

I shed a couple tears in pain and frustration while they were out of the room, but was smooth-faced when #1 came back in. She looked at me, apologizing yet again for how long this was taking, etc. and saw that my eyes were a little bit red. "Oh no, did I make you cry? I'm so sorry, I didn't mean to hurt you." Sigh. Really? This. Is. Not. About. You. How dare you guilt trip me for crying? I'm being stuck with needles, repeatedly. I'm enduring tourniquets on/near joints that already hurt from arthritis and easy dislocation. I'm allowed to cry a little.

Nurse #3 listened to my explanations, opted to try my other hand, and stuck me between 2 knuckles and nowhere near either of the veins in the hand that people stick. It hurt more than any of the previous 4 attempts and (naturally) yielded no results, as it was miles away (relatively speaking) from the nearest vein. She gave up and passed it off to the next one.

Nurse #4 came in, smiled at me, and listened carefully to the things I told her. She immediately went to get other equipment to respond to the idea that vacutainers may be collapsing my veins. She tried one of the veins #1 and #2 tried and got nothing, then found a tiny vein in the front of my wrist that she was sure she could get. She was careful, gentle, made soothing noises but no repeated apologies, and finally got blood flow by using a manual syringe. I've got a few small bruises from where her fingernails were pressing into my palm to hold my hand very still to keep from compromising the blood flow. Nurse #1 was working the syringe to draw the blood, which was flowing, however slowly. She decided to switch to the vacutainer again - and got maybe 6-8 drops of blood before it stopped going anywhere. #4 knew what she was doing, got results, but #1 had to screw with it and make it unusable. Thankfully, they'd gotten just enough to run the tests they needed and I was allowed to leave.

Ehlers-Danlos means keeping the smiling, placid face on, even when I'm writhing internally from the pain - because if I show it, the nurse will become a distraught mess of apologies again. It means being able to lie with a level, measured voice, "I'm fine, it doesn't hurt" - because if I tell the truth, the nurse will become even more tentative and unsure of herself, thus hurting me more.

I left the office in angry-ranty mode. By the time we got through lunch and going to the store for a few things and some prescriptions, I was in sarcastic/cutting remarks about everything mode. By the time we got home, I was falling into the depressed, "why am I so broken" mode, which is where I am now. Sleep will help, I hope.

Tuesday, December 11, 2012

Privilege, appropriation, and my (very probably) unpopular opinion

Disclosure: I am a disabled, biromantic asexual, poly, pagan, fat, cisgender, white chick.

I use a cane to walk, and even then, I can't walk much or far. I've got a genetic disorder that causes a ton of secondary problems like early onset arthritis, fibromyalgia, and others. I've got severe asthma, exacerbated by a primary immunodeficiency that makes me more susceptible to respiratory illness.

I am romantically attracted to women and men, but sexually attracted to neither. I am "fully functional" as it goes, I just don't have any interest in pursuing sexual relationships. I'm involved with multiple partners (everyone is aware of everyone else), and everyone is cool with me not wanting sex.

I've been some flavor of pagan since I was about 15, and contrary to the opinion voiced to me when I told someone this at age 16, it's not a phase I'm going to grow out of. I know what persecution is, first hand. Have I been beaten or thrown out for my faith? Not quite, but nearly so - and only because of a strong mother who defended me.

I'm a fat woman. Much of my family is large, making me think there's a genetic component to it (since we live in far-flung places and don't all eat the same things), but my medical conditions contribute greatly to my size. I'm generally okay with my weight, though admittedly it would help some of my medical conditions from a structural integrity standpoint if I could shed some pounds.

I'm a white woman. Oh boy, am I ever white. I've been called "the palest white girl I ever met" by former colleagues. I've got a heritage that is so varied across Europe, and is so far back (in all but 1 case) that I don't identify with it. German, Polish (that's the 1 exception - it's only 2 generations back), various flavors of British Isles. Dark hair, light eyes, very pasty white skin.

I figure I'm in at least 4, if not 5, minorities with my list up there, and the only named privileges that I count myself as having are white and cisgender privilege. So, let's start there, shall we?

I am so, so beyond tired of talk of privilege and it's closely associated cousin, appropriation.

Yes, I get upset/annoyed/angry (depending on situation) when people are insensitive to the feelings and experiences of people who are disabled, or non-heteronormative, or members of a non-mainstream faith, or who defy the cultural standards of beauty, or are women. Can I get upset/annoyed/angry when people are insensitive to the feelings and experiences of people of color or transgender individuals? Of course I can. I don't have to be a member of a group to agree that some things Are Not OK to say or do to/about members of those groups. That would be ludicrous - that's why groups have 'allies' - people who fight their fight along side them, even when it isn't the allies' fight, personally.

So, if I can help fight their fight, why can't I express appreciation for cultures not my own, up to and including portraying them in my writing?

I'm disabled - sure, that makes me qualified to write disabled characters. But I don't have ALL the disabilities, so can I only write characters that share my disabilities? Oh, that's silly? Okay. It's okay if I write about a character who might be, say, autism spectrum, even though I've never had a spectrum disorder myself? I worked with autistic adults and youth, so maybe I get wiggle room on that one.

I'm pagan - I know an awful lot (but not nearly everything) about a bunch of different faith traditions that are not Christian, Muslim, or Jewish. What religions am I allowed to write about, then? Wicca, I suppose - seems like everyone writes about Wicca (even if I, in my own humble opinion, think many of them get it wrong). Christianity is probably okay, since I grew up with it around me and I've picked up a lot through osmosis. But what about Islam? Judaism? Shinto? Buddhism? Hinduism? What about Native American traditions? I'm not from any of those faiths in specific (though I probably hold at least a few things in common with each of them), so does that mean I can't have characters from those faiths in my stories because I'd be appropriating a culture that's not mine? Now, I'm not talking about going into depth about faith practices - I wouldn't write about the innermost ritual bits and pieces of my own faith in a story, let alone a faith I wasn't immersed in - but if I'm a responsible writer and do my research, can I have Muslim or Shinto or Native American characters?

That brings me to my next bit: cultural appropriation in general.

As I mentioned, I'm a white European mutt, as far as heritage goes. If you tally up the percentages from my family tree, I've got a majority of German over the others in my background, followed by Polish. I know so little about German traditions as to be almost negligible. I know the New Year's tradition involves eating pork and sauerkraut (pork, okay - sauerkraut? Grossest thing ever.) and that Christmas trees are decorated with apples (I've got a cheap dozen of plastic apple-shaped ornaments from the dollar store that I use some of each year). Get beyond that and the most I know is a vague idea that people drink lots of beer at Oktoberfest.

Polish. Hmm... Does Polish sausage count? 'Cause that's about all I've got.

These may be my heritage, but I wasn't raised in a culture that reflected them in many ways at all (the holiday traditions above being the only exceptions), so I don't identify with them. My New Year's tradition is from Cuba, and I've got none of that in my background (disclosure: my fiance is part Cuban) - but it resonates with me far more to make lentejas de buena suerte to bring luck and good fortune in the year to come than it does to make a pot of stinky cabbage-based goo that I can't stand to smell, let alone eat. I spent years in Spanish classes that taught culture as well as language, and my college professora was (and is) enamored of Cuba. Am I wrongly appropriating Cuban culture by observing their customs, rather than those of my own heritage, because I don't have any Cuban blood? Or does my tie to my fiance give me a pass on that one? Can I write characters with Cuban culture? Am I restricted to only my culture and those I am directly tied to?

I've read a few things recently that sparked this rant up from a low, background simmer to a soft boil. Stuff like "white people should never use the words 'tribal' or 'ethnic' to describe something" or "if you aren't Hawaiian, you should never have luaus, grass skirts, or go to tiki bars because white people destroyed lives when they came to Hawaii and it's wrong/disrespectful/etc. to appropriate these parts of their culture now."

I get that some things are Off Limits when treading into territory not your own. Blackface (or yellow, red, etc.) is a don't-go-there thing. There is too much awful history associated with it for it to be reclaimed at this point, so it should stay as a part of history only. Insults on someone's ethnicity? Also a don't-go-there thing. Saying "jewed" or "gypped" to mean "cheated." Likewise, slurs on someone's sexual or gender identification or on their disability - definitely don't-go-there things. Using "gay" or "retarded" to mean "stupid" or "unfair" or simply "wrong." I can even understand why "gypsy" is considered a slur now (though I personally don't think this will change my enjoyment of the myriad of songs I know that have gypsy in their title/lyrics).

But tribal? Ethnic? These are descriptors. Adjectives. I've never heard of either, in and of itself, being a slur to anyone. If I'm wrong, please correct me. A good writer uses as few adjectives as is necessary to accomplish the task, but that doesn't mean I don't dearly love having as many varied and colorful little adjective-baubles at my fingertips, to play with as I wish.

If a white person gets a tattoo that is inspired by a tribal design from a native culture, how should that person describe it? Is 'tribal tattoo' bad? Can it be 'inspired by tribal design' instead? Should they just never get those tattoos? While I'm sure that last is preferred by some, I find the idea that it could about about as realistic as saying 'only men from Ireland or Scotland can wear kilts' - that is to say, not very. Along the same lines, why is it bad to wear clothing that is traditionally worn by a culture that is not your own? The first times I ever saw a woman wear a sari or a salwar suit, they were both very white women with no trace of the culture the garments came from. And I thought they looked like the most comfortable, prettiest things ever. I don't have a culture I identify with (as "American" isn't at all one, cohesive culture), so why is it so evil for me to wear things I find beautiful from other cultures? And can I write characters who are maybe from Panama that like to wear salwar suits?

An important distinction I'd like to make here (if you're still reading, congratulations and thank you for sticking this out): taking something sacred from another culture and using it for secular means isn't okay in most cases. I wouldn't take a Jewish prayer shawl or an Islamic prayer rug or a Wiccan athame and use it for other than its intended purpose. The flip side of that is that I would use them for their intended purpose - taking something sacred from a culture not your own and using it for sacred purpose is fine. But if I see someone with a sacred item from a culture that doesn't look to be their own, you know what? I won't be the one to judge if they're using it properly or not. I don't know the person, I don't know what faith they ascribe to, what culture they identify with, etc. Maybe they were adopted. Maybe they converted. Maybe it's just a fashion accessory to them. I don't know, and unless I get to know the person, I never will - so I can't judge if someone is being proper. It's kind of like looking at someone using a wheelchair or a cane or a motorized scooter - if the person looks 'healthy' then why are they using those things? Bzzt. Don't know them, can't see something invisible (like many disabilities, or faith, or culture), so can't judge.

With my stories, maybe I have a white girl who is Hindu. Or a brown girl who is Wiccan. The nice thing (or maybe not, I'm still figuring this one out) is that people make their own assumptions about characters, generally in spite of what is written. I've read stories where the setting was so typically medieval European that it took me a few read-throughs to notice that the characters were described as dark-skinned. I'm sure if I describe a character as Hindu, people will make their own assumptions about ethnicity (unless I make it a mallet to beat them over the head that the character is not what they expect).

People I adore and respect into itty bitty bits have said some of the things that have had this rant percolating, which is why I waited as long as I did to write it up. I took the time to 'check my privilege' as it were, and I think I've got this about as unbiased as I'm going to get it. Simply put, I don't think appropriation is quite the evil I'm constantly told to feel that it is. Are there things with giant Do Not Touch signs on them? Yep. Are there many more things that I think are beautiful and worth sharing? Oh, so very much yes.

Monday, April 21, 2008

Are we done with the primaries yet?

I love my RSS reader - I can't always read everything that comes across, but I generally skim everything to see if there is anything that catches my interested. I have separate sections for blogs of friends, fun stuff, geeky stuff, LGBT related blogs, lifestyle-specific blogs, news, politics, science, tech stuff, miscellaneous editorial commentary, blogs by writers/about writing, and a category for totally random stuff (like the archive). I typically read 2 specific left-wing blogs for my daily dose of political commentary; AMERICAblog and Crooks & Liars.

I said "typically." For the last month or so, I've been largely skipping all posts from AMERICAblog on my RSS reader, and sticking entirely to C&L. Why? Because in recent weeks, AMERICAblog has become all about the Hillary Clinton hounding. I get that they love Obama, that's cool. He's a great candidate, and I will happily vote for him in the general election if he gets the dem nomination. I don't necessarily think he's better suited to the job of president than Hillary is, but they are so close on issues that I have no problem with pledging my vote to either one. I get that they are endorsing Obama, that's cool too. They are certainly entitled to endorse whomever they wish for the nomination.

That said, why do the authors of a left wing blog feel the need to get so hyped up, practically to the point of frothing at the mouth about Hillary, another left wing candidate? Has she, or people near her, said or done things that weren't completely politically correct? Yep. Has Obama or people near him said or done things that weren't completely politically correct? Yep again. It just seems to me that this is another tiresome instance of focusing on everything but the issues - you know, the things that matter. But then again, I suppose that when the candidates are so close on the issues, there isn't anything left to focus on but the extraneous bits.

Seriously, aren't there better things to report about than the left wing candidates' associates' brothers' dog pissing on the shoe of the other candidate? The dem primary is one small part of the larger political scene, and there are so many other things going on, politically, that should be talked about. I am normally very invested and interested in primary politics, and follow it eagerly up to the end - but now? I am just so sick of hearing about how the candidates are at each others' throats, I just want this season of politics to be over. It's not the candidates and what they are saying or doing that prompts that feeling for me, however - it's the "vast circle jerk of pomposity" that just won't stop.

For the reference made in the last paragraph, and some wise, strong words from Bill Maher on this subject, see this clip of 'new rules' from C&L.

When the primary season is over, and I can be reasonably sure I won't have 10 posts a day hounding after Hillary, or something one of her associates said or did, I'll resume regular reading of AMERICAblog - but until then, I'll be skimming post titles and clicking the handy "Mark all as read" button.