Wednesday, May 18, 2016

The West Wing is never wrong.

There's this episode of The West Wing (see below), where President Bartlet says to Josh Lyman "I want to be the guy. You want to be the guy the guy counts on," and I think it is the piece of fictional dialogue I have most related to in my entire life.

Because that's me: I want to be the guy (or girl, in this instance) that people count on.

And I think I am, to a pretty large extent.

But the thing about being that guy/girl, is that it's fucking hard. And lonely. Frustrating. Anxiety-producing. And, for me, at least, it's really really difficult to stay on the side of the line that equates with uber-dependability, without crossing into total, unselfishly-selfish martyrdom. (Because, honestly, is there anything that winds up being more selfish than a person who can't think about themselves in any situation and starts feeling taken advantage of by everyone in their life? Probably not.)

So, it's a difficult line to toe, and I definitely feel like I have fallen, head first, over it in my current situation, which has created this atmosphere where I find nearly everything my brother does upsetting, and I can't figure out if I'm overreacting or not. I feel like all of the sudden I'm realizing that everyone else has been right for the past year and a half; that he is definitely taking advantage of me, and that I'm enabling all sorts of inappropriate behavior on his part. That I've somehow wound up in this relationship with him where I can't be honest because I feel like he takes offense so easily, and the kids are the ones who wind up getting hurt.

For examples - he cancelled my nephew's birthday party the night before because his other aunt (my deceased sister-in-law's sister) overstepped and tried to change the times like it was her right. I get that she overstepped, but he completely overreacted, threw a tantrum and we all just had to go along with it, because they're his kids, and he is in charge of them. He overreacts about 95% of things - in a way that I find aggressive and overwhelming, because it reminds me so much of our dads, and their bad behavior, and I usually back down, because it's the kids who are in the middle. I wind up having to act as interpreter for him to everybody - "he meant to say" or "he's really hurt about" or "he's just tired tonight". So many fucking excuses that I heard as a kid and told myself I would never tell, and here I am slinging them like I'm reciting back my ABC's.

I know he's hurting, and I know he's grieving, but I also know that he's kind of an asshole, and, under any other circumstances, I would tell him so. I call him out when it's stuff with the kids - or at least try to, I'm ashamed to say how often I find myself retreating into the intimated girl I used to be when faced with slamming doors and stomping feet - but let everything else go with a "I am just to tired to fight this fight today" mentality. I just don't know why everything has to be a fight, why everything has to be so tense all the time. 

His sense of responsibility and mine are completely different: I have been putting those kids first - before  my own health, even - since they were born. Not full-time, until now, but definitely in a way that has been unhealthy for me, even. He thinks he has been doing the same thing, but, it's different.  He thinks working and feeding them and not exploding every time he's pissed off about something is something that should earn him kudos and cookies.  I think you're doing the bare minimum that is required of you as a father, and you just need to get on with it and act like a grown up.

There was a lot of talk, after she first passed, about letting him sink or swim on his own.  Just... going home and letting them all put the pieces back together as best they could. I knew then that that just could not happen, because he was as checked out as he could possibly be, while still being physically present. And those two kids needed more than a father-sized shape walking around, especially with the big gaping mother-sized hole they both will always have. An auntie who is trying her best-sized block isn't good enough: it's never going to be. But if it's what we've got to work with, then I can't take that away from them. I can't imagine leaving, of my own free will.  I can easily imagine him making me leave by being so much of an asshole that I can't deal with him anymore without losing my mind. (Because I lived with one of those already, and - as hard as I try not to draw comparisons, they are there to be drawn.)

He's not always an asshole. He can be sweet.  He plays catch with them sometimes, or surprises them by going out for breakfast. He lets me buy whatever the hell I think we need grocery shopping online, even if I have to order every other day. He doesn't care about paying for things, except when he does, and make a big deal out of those things.  He worries about me, when I'm extra/normal people on top of chronic sick, even if he doesn't actually do more so I can do less.  He has said the words "You don't need to contribute more than your presence to stay here - I don't expect more from you than what you do." But I also don't feel like he gets what I do, the extent of it or the import of it, at all. 

I guess I just feel really underappreciated right now, since he just took a night off the other night - just went out and didn't come home, and told me at like 3:30 that that's what he was doing, and didn't even tell the kids, and left me to deal with the fallout, and then got pissed the next morning when I told him there was fallout about it from the kids.  And then the kids were all fine when he was here, and he didn't have to deal with any of their anxiety at him not being home or their anger that they didn't know, or their terrible, horrible, no-good, very bad days, and I did.  I took care of them, and I keep taking care of them, and I love it, because I love them, but.... it is so hard. And he just doesn't see.  He doesn't worry about Lil Girl's back, or NephTwo's broken heart, or MCAS or the stupid fish that hides in its filing cabinet, or why nobody can fill up the whole goddamn dishwasher instead of 9/10ths of it, or if that one's wearing the same dirty shirt she wore three days in a row, or if this one is coming home late and is all giggly, and now I have to google what the signs of pot use in teenagers are, even though I didn't smell it, but I have a stuffy nose, so let's just double check.

 He loves these kids as hard as he's ever loved anybody else, I KNOW it, I can SEE it. But he SUCKS at making them feel it. At showing it in any meaningful, past this one specific moment, kind of way. He worries about them too, but I know it's not the same way I do. I worry about them first, and I don't think he does, because he couldn't act the way he does if he was thinking of them. My grandmother always said fathers were like that, that mother's hearts were different, and fathers never really understood, but I hope that's a piece of generational sexism that doesn't prove true.  I mean, no: they are different.  But I don't think that means father's can't put their kids first.  I think he may even believe that's what he's doing. I just don't know how to get him to see that his behavior is as harmful as it is. To all of us.

And I really, really, don't want those kids to come up to me, 20 years from now and say: Why couldn't you just tell him he was being such a jerk, why did the house have to feel like that? Because it's what I sometimes want to say to my mum, still.  And I know these issues predate SisterNc's death, because their relationship was rocky and had a lot of the problems I'm banging my head against right now, but it's different, bc he's my brother, and they're not technically my kids, and I'm supposed to be helping.

That's the real problem - I'm supposed to be helping, and I just don't know how to do it right now, so I feel like shit. 

Probably I'll just start rewatching The West Wing.  That seems like a good idea.

Sunday, May 01, 2016

#Ableismexists, so we BADD again.

One of the more insidious things about ableism is that - unlike a lot of other prejudices - there's still an absurd amount of debate over whether it even exists or not.  For example: my spellcheck? Still underlining it.  A more widespread example would be a recent Twitter hashtag, #ableismexists, which wound up with a not-insignificant number of retweeters who were arguing that it actually did not - while this was in no way a surprise (but rather an unfortunately common response, in my experience), there was one new-to-me experience: At least one of the most prominent deniers was a woman with a disability herself.

The woman in question made a YouTube video where she - while using ableist terms like 'retarded' and 'idiots' - not only insulted the originator of the hashtag's lived experience, but talked about how loving and feeling pride & claiming as part of his identity his disabled body was 'sick'. Obviously, I do not agree with her, but I also felt like her post (which got retweeted a LOT by non-disabled folks, trying to disprove that ableism was a thing in a  "See: a disabled person doesn't think it's real, so how are we supposed to take it seriously"way) raised a pretty interesting point - specifically, the idea that if you don't experience something, how can you then feel qualified enough to say that it doesn't exist?

This woman's story is her story - for her, ableism and internalized ableism were not just foreign concepts, but things she found actively oppressing: More than once she said (or intimated) that the closest thing to actual ableism was what 'social justice assholes' were creating by believing in ableism, that accepting disabilities and disabled bodies was an injustice - an ableist trope I myself have had to overcome (more than once, and in more than one way) - that 'accepting' our disabilities was as good as 'giving up', allowing us to 'feel sorry for the poor little cripple', accept a role as victim for the rest of our life.

If that's her experience of ableism, I can see why she'd fight so adamantly against acknowledging it.  My experiences accepting the fact that there are systemic, social, financial, legal, informal, educational, medical, (and a million other forms of) injustices against disabled people has helped me to step out of feeling like a victim, and into feeling like a member of a larger community - not just of people with disabilities who are fighting these injustices, but of any community I have ever been a part of.

I never felt more like someone who belonged on my college campus until a group of girls in my dorm helped me realize that some of the policies the school had in place were creating a completely unfair burden on me - a wheelchair user who, because she could sometimes walk a few steps, was forced to use the stairs during a fire drill and wound up incapacitated for months.  When it happened, I didn't feel as if I had any recourse, or as if it was the school's job to change its policy: It was only the insistence of the women in my dorm, who saw the result of the policy, who made me recognize that the policy itself could be unfair, that the school could be operating under its own prejudices of 'if you can a walk a few steps, you can take the stairs', and that that was an inequality that needed to be addressed.  I didn't feel more like a victim because someone explained to me that the rules were unjust; I felt LESS like one, because now I had something I could fight to change.  My ability to use the stairs was not going to change (no matter how much I may have wanted it to), so the policy needed to.

Figuring out that doctors aren't always without prejudice (particularly when it comes to treating chronic pain patients), has empowered me to step away from more than one doctor who was actively doing me harm. Witnessing that some so-called 'advocacy groups' work against the group they're supposedly advocating for has made me a more conscientious advocate myself, has taught me to listen to the people who are being spoken for, to give them the space to speak for themselves, wherever possible. Recognizing ableism in larger society, and in my life, has allowed me to (among many other things) set more realistic goals for myself, commiserate with and fight for other oppressed groups, speak up on my own/other disabled people's behalves, step out of the mentality that - although my disability isn't something I would have chosen - it isn't something I can live well with.

For me, accepting my disability has been a long and complicated process - I still sometimes struggle with the realization that a lot of things are not going to happen for me, because of my health, and that that's ok.  I still sometimes struggle not to push myself too hard, because it always ends up with dire health consequences when I do. I still sometimes have an issue with feeling like I'm not doing enough to be considered helpful, that I have to miss out on too many 'normal' days with my friends and family for me to be worth them sticking around for. That I still have value even if I am contributing nothing financially. All of those issues (and so many more) are things that I accept are internalized ableism - thought processes that have decided my value as a human being is lessened by my chronic illnesses and disabilities. Accepting that the way I feel sometimes has more to do with a screwed up value system (capitalist societal norms of value being connected to financial contribution, for example) is 100% more empowering to me than thinking that I am worthless because of something I cannot control.

I'm not discounting that woman's life or experiences - if she feels like ableism is a detriment to her personally, and to disabled people on a larger scale, that's her right, and it's her right to say so when the issue is addressed (which is why I'm not linking to her video: I'm not trying to start hate anywhere). But I think to ignore and dismiss and discount the people the tag - and those of you who participate in BADD every year, and millions of more disabled people - is equally unfair. 

Just because it is not your experience, doesn't mean it's not valid. 

To read about some more perspectives on (Dis)Ableism, head on over to the Goldfish's abode: BADD 2016.