I was/I am/I will be

There's an art class on my campus building interactive art pieces and displaying them for short periods of time around campus. Today I ran into one with three sides, which read "What I am" "What I will be" and "What I was".

I felt very defiant when I wrote "I am a woman" on one side. I tried to figure out how to convey my contempt for current politics and social climates, but couldn't think of a short phrase until after I walked away. I could have finished with "not a uterus".

I also wrote "I will be valued" and "I was unaware".

That about sums up some of the things that go through my mind on a regular basis, particularly when thinking about "home."

It now occurs to me that the only category I put a noun in was the present tense one. Interesting, that.

What about you? What would you have written?

Patience, and some history

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to.
-From The Spoon Theory by Christine Miserandino

Do you run through each day on the fly,
when you ask "How are you?", do you hear the reply?

When the day is done, do you lie in your bed,
with the next hundred chores running through your head?

You better slow down, don't dance so fast,
time is short, the music won't last.

-From Slow Dance by David L Weatherford (Warning: music and obnoxious formatting at the link)

I used to live a high-speed life, and in some ways still do. In high school, I took the most challenging courses offered each year, plus concert/marching band. Marching band by itself is a huge time commitment, involving band camp, after-school practices, in-school practices, home game performances, competitions, and annual ceremonies such as Veterans Day and Memorial Day. For two years in high school, I was involved in committees at the UU church I attended (my senior year, this was the Executive Committee). I was in chorus for one year in high school, and in the UU society choir for two. I participated in some GSA events. I went to poetry club meetings. I worked on the literary magazine. I volunteered. I somehow juggled all of these, if not effortlessly, at least well.

[A lot more after the break.]

Ableism

Trigger warning for ableist bullshit. Also, disclaimer: "you" used in this post is a general "you" that isn't addressed specifically to you, the reader of this blog.

ETA terminology: "zie" and "hir" are gender-neutral pronouns, sort of a cross between he/she and him/her.

My facebook status:

For the record: when I say I can't drive any more today, I mean I can't drive any more today.

I know I don't LOOK disabled, but do you really want to see for yourself what happens when I push my body too far? Because been there, done that, have the (emotional) scars to prove it.

This has been bothering me since something happened earlier this evening in which the individual in question thought that telling me zie'd been driving a lot more meant that I didn't have the right to complain.

But, this individual, I'll call hir A, is able-bodied. Zie rarely gets sick, doesn't have a disability, and as far as I know is only chronically short on sleep (not that that's a good thing, either, but that isn't nearly what I have to deal with).

Hint to the world: I don't kid about how much pain I'm in. There's actually a good chance, depending on who I'm talking to, that I understate it. So if I'm telling you I can't do something, it's because I have absolutely no spoons left to do it, or will have to borrow against the rest of the week, or have already gone beyond my limits, or some combination of the above.

To suggest otherwise is to disrespect my autonomy and ability to judge my own body. And it isn't a fucking invitation to play the "my life is harder than yours," card. It's a simple statement of what I'm currently capable of, and I frankly don't give a shit what you've had to do today if you think I'm deliberately trying to elicit that response.

Have a good fucking night. You know what? Have a good night. Have a great night. I hope it's one you enjoy so that maybe you'll be nicer to people tomorrow.

An (very long) Observation

I have a pretty specific perspective on life in general and how I treat my disability in particular. By specific, I don't mean extremely detailed; I mean formed from my positions in life. I am young, a woman, attending a small residential liberal arts college in New England, poor, a feminist, and plenty of other things besides. As a college student, I talk to tens of people on most days of the week. As a house manager, I'm expected to be responsible and to be a resource for my residents and the community at large. I developed this disability (or maybe it would just be recognized?) in my freshman year of college, and was quickly diagnosed with Sjogren's Syndrome. I went through elementary school with epilepsy, but in middle and high school I was pretty "normal" health-wise. Unlike epilepsy, for which I had a "long shot" at outgrowing it (whatever that means; I haven't had a seizure in over ten years), Sjogren's syndrome doesn't seem too likely to just go away, and so I'm suddenly looking at a lifetime of dealing with this particular form of disability.

Don't get me wrong; I have plenty of things going for me. I'm extremely motivated to do well and learn, and to find a job after college that will allow me to support myself completely independent of my family (though that isn't likely to happen right away). If I don't do those things, I will be struggling for survival. (I mean that in a literal way; as mentioned, my family is poor, so I don't have too many resources to fall back on in the financial department, and if I don't get health insurance, I'm pretty sure I won't be able to make a living because I'll be in too much pain to do so.) I'm also what's called "Gifted" as far as academics go. I was one of those students in high school who didn't even find AP courses terribly difficult, except in the amount of work assigned. College was the first time I ever struggled to pass a class (it was Chemistry, a science I didn't particularly like anyways, but I thought I was pre-med then, and my study skills sucked due to the didn't-need-to-try thing and also the bad school district thing). At any rate, I'm very capable of doing many different kinds of mental work, and greatly enjoy doing them.

But all of these things give me a pretty biased view of life. It's very different from the one held by, say, a woman* I know who is in her 50s, never went to college, manifested fibro-myalgia in her 40s, has three kids, has limited access to and knowledge about the internet, and sees a limited number of people on any given day. Or any other variation on the many parts of a person's identity.

These kinds of things pop out to me when I try to discuss my particular needs with people whom I need to respond to my needs. The woman in the paragraph above is someone I alluded to indirectly in my post about Everywo/man MD; she was one of the people upset when I asked everyone who could read my facebook status to stop offering me unsolicited advice. Her thoughts were that she knew what I was going through, so she should be able to offer this advice without me getting mad at her. Thing is, she doesn't know what I go through. Sure, some of her symptoms are similar to mine, but she doesn't talk to dozens of people each day, and she doesn't attend a college where she has an extremely high chance of running into at least 10 people who genuinely want to know how she's doing each day, and she doesn't have many of those people respond with either oft-repeated (and sometimes useless) advice, or clueless advice. Beyond that, every person has a different response to stress, and so things that work for her are useless or actively harmful to me.

This isn't a one-way exchange, though. I can empathize with other people who have chronic illnesses or disorders, but I don't know everything that goes into their days, and I'm not in their head. I try to be mindful of this when interacting with people. It means I frequently remind myself not to offer advice if someone clearly just wants someone to listen to them, although I can't say that I'm 100% successful at this. Part of my job is offering resources to other students, but I try to frame this in terms of, "these are some of the options I see for you; do any of those sound like a good choice for you? What would you like to do?" (Though not necessarily in that order.) I do this because it's always better if the student feels that he or she has an active role in the decision-making process, and arriving at a solution together builds self-esteem and problem-solving skills. On the other hand, if I tell my peers what to do about their problem, they're far more likely to reject it and feel resentful.

It's all about perspective, and agency.

To bring this back to my original point, the values and strategies I use in my life for assessing and acting on the world around me come from a set of biases that are specific to me. These are not the same values and strategies that someone even from a similar background and in a similar situation will necessarily have, and they come from a very different place from someone with different biases. There are generation, educational, racial, ability, and gender differences, to name but a few, and they all affect worldview.

Edit: What are your perspectives? How do they affect how you view the world? Have situations come up for you where you really noticed how differently someone else views things because of hir perspectives? [Feel free to answer any, all, or none of these, either here or in your own space. I'm just throwing some thoughts out and fishing for responses that might have an impact on either myself or others.]

[Apologies also for tangents/lack of cohesiveness, if they exist. I didn't outline first.]



*Without getting her permission, I'm not going to post either how I know her or her (first) name. If, at some point in the future, I get that permission, I will use it in posts at that time. I may come up with pseudonyms in the meantime, but we'll see.