Saturday, November 8, 2014

Thoughts on surviving familial abuse over Samhain week

It's been a tough week for me, and for many people in the disability rights community.  When a terrible thing happens, it brings out all the things that make us sad.  But I can only speak, right now, about my own personal experiences, because it's what there is energy to do.  These personal experiences reflect something many people go we'll get to common ground eventually in this post.

Last Friday was Halloween, or, for me, Samhain. I guess when a person dies early in your life, someone who taught you what you knew about activism, someone who put the fire for it in your blood, you might get obsessed with holidays for honoring the dead at an early age, and that's pretty much me.  My uncle's been on my mind, and I felt that I did a good job honoring him last Friday.

The last time that I felt I was honoring him properly, I came out to his family (more) about abuse I dealt with in my home.

My family is Irish Catholic, and we don't talk about much.  That's the way it is. But abuse still happens, and I don't get anywhere by bottling it all in.  I felt that I would have been supported by my uncle when I went into more detail than I ever had before about things that happened in my immediate family's home, partly while I was estranged from him and the rest of my maternal relatives.

My mother is an extreme, unrepentant abuser.  Her situation is complicated.  But this post is not about her. It's not really even directly about my family, either...  It's about the reaction to when you can't contain it anymore and you come out to your family about abuse.

A lot of people are disowned by their families of origin. And for coming out about the abuse I dealt with, I lost contact with an aunt.  No, I was not in a good place. No, I was not considering her feelings.  I was exploding inside.  I was going out of my mind.  I was not going to be quiet about it any more.

There are many layers of abuse in my past, and for a lot of complicated reasons I confronted my family on St. Patrick's Day.  I'm Irish, but it's not a good day for me because of associations with abuse, and other cultural reasons it's too complicated to get into here.  And I was trying to reclaim it.

And I did do that.

If I lost contact with this aunt, part of it was my refusal to see things her way, that I had "been inappropriate" in disclosing.

I did it for myself, yes, but I also did it for the many disabled people who suffer endless abuse from family and caregivers. I am older than many of my other disabled friends, and I was showing wasn't just them, it was me too, it is all of us.  And it is okay to confront your family.

It is okay to confront your family--if you will be safe physically from retribution. It is okay to protect yourself and it is okay to call out able-bodied people for the ableist, abusive things that they do.

It is okay, and it also hurts.

It hurts to lose family, which you might.  It is terrible, really, to feel unsupported... but if your brain is going to cook from the stress of holding it in... you are under no obligation to protect people like that. You are under no obligation to protect people who abuse you and you are under no obligation to protect the people who protect your abusers. Even if they are your "family."

My family is small. Some relatives, a few who are dead, and a few who are alive. A few friends.  Not all of my family are blood relatives and not all of my friends are family.  It's a lonely road, but holding in stories of abuse has always been worse.  Holding things in is not a thing I do well.  Call it not being raised with boundaries, call it having no filter, call it being a loudmouth.

Whatever it is, I know I'd have my uncle's support.  Every year, I'll reclaim the day I confronted my family a little bit more in his name.  It's all I can do.

If any of this resonates with you, find your chosen family.  Talk to them. If you can't confront family members, at least let it out to safe people. There is nothing wrong with any of this. There is something wrong with abuse, with protecting abusers, with condoning abuse, with blaming the victim.  But not with calling abuse of people, especially disabled or otherwise marginalized people, what it is.

Happy Samhain, all. May it be a better new year.

Wednesday, August 13, 2014

Robin Williams Was My Bipolar Comrade In Arms

Robin Williams was a bipolar man.  This is a fact which is being erased.  The situation is being treated as if he had unipolar depression, or as if suicide just came out of nowhere and he did not know how to get help.  Robin was very open about his depression.  But anyone with bipolar could also recognize his mania.  The idea that he might just not know how to get help is ludicrous and insulting to Robin. When you have bipolar disorder, you struggle with it every single day.  You struggle when depressed, and you struggle when manic too.  There are two poles.  And it seems obvious to me from the way that his bipolar disorder is being erased that this and my other life experiences are teaching me mania scares people more than depression does.

A lot of people have depression. And they want to speak up about it, and that's great.  But Robin's mood swings were larger than from depressed to normal and back. They were from mania to maybe normal and then depression. Extreme highs and lows that are torturous to endure.  The differences are so vast that life can seem unliveable, unmanageable.  Depression itself is like a black dog in the corner who you are always aware of. Bipolar can be an out of control roller coaster.  It is exhausting. It is torturous.  And when we lose a bipolar role model, it's impossible not to think it could be us, that a swing will just be too much.

I wrote the following two posts since Monday when I found out, and I feel that both sentiments have value. I am going to save those sentiments:


Oh my God. Robin Williams died. This year is a really bad year for deaths, not just celebrity deaths... just wow.

And they think it was a suicide. Oh, my bipolar buddy. D: It's a tough fight, my friend.


When we collectively mourn Robin Williams we are mourning for someone who gave us many formative, thought-provoking moments in our lives. Yes, Robin was a comedian, but his movies also tackled very dark subjects. (You don't get much darker than What Dreams May Come, a movie that makes me sob from beginning to end.) But also, those of us with experience of depression or bipolar have lost a comrade in arms today. This must have been why Robin was drawn to the darker movies that he did. So many which addressed suicide, either as an entire plot device or in passing. He was incredible to be able to bring us those topics and make it through. Incredible strength. I don't say that because of his entertainment ability, I say that as a fellow bipolar person. I could never have addressed half of the things Robin did regularly in his career. I would not have the strength of will.

I have already almost succumbed to suicide more than once and the only reason I am here is the trauma hospital. It really scares me that I may have to battle this again. I can't/won't judge Robin for losing the fight, but the strength that he had was amazing, and to see him succumb is pretty terrible. Can I make it another 33 years with this brain? Will it all be way too much by then? I don't know. I'm just relieved that right now I get to have a clear head...but every med change is roulette (even moreso for me than most, as I already sustained additional brain damage from med fail), so I don't think too far into the future.

This isn't a hypothetical for me. It may be an eventuality. Just ugh.


I am immortalizing these posts here. Because Robin didn't secretly become un-bipolar.  He was bipolar.  He had incredible swings, intolerable swings, and when you reach the point of that unending low you do not see a way out other than the one he took.  There is only one solution to you then.  Yes, he was depressed, but imagine that he didn't just have to contrast that with normal, but with the amazing highs during which he got his work done.  It's that much more torturous. The fight is that much tougher, broader, and deeper. And I won't see it erased.

You fought hard, Robin, and I honor you--all of you.  Not just the funny parts.  And not just the parts that other people like.  All of it, the messy, rough truth.  Thank you for all that you've done.  No one else could have done it.

Your comrade,

Other blog posts on this topic:

Sunday, August 10, 2014

Internet Cat Calls Are a Thing. Let Me Show You Them.

Recently, I received a cat call from someone I had known for a few days.  It was in electronic form.  It was right here on the Internet.  I barely knew the person. At the time, he did not have access to pictures of what I looked like.  Oh, and by the way, it was on my birthday.  "Happy birthday, sexy," he said.

This is not appropriate language from an uninvited stranger.  This is a cat call.  It feels the same as being hounded by a man on the street.  And furthermore, it's happening over a medium that I, and many other people, access from home.  So this is similar to getting a phone call from a complete stranger consisting only of, "Hey, gorgeous/sexy/cutie/sweetie."  Or someone coming up to your door, ringing the bell, and doing the same.  This is language that is uninvited, and I do not want this attention from strangers--I only accept such terms from lovers, and so do most people I know.  Hearing them from a stranger is a violation.

This is gross. This is about entitlement.  It can happen without anyone seeing your picture (yes, even on Facebook).  It is not about what you look like or actual attraction, it is about power. It is about an assumption that you are required to be flattered. It is about ego. It is disgusting.

If this happens to you, own that this is a cat call and this is not okay.  Strangers--people--should not behave this way whether it is offline or on. It is a violation of boundaries.  Anyone who encounters this, regardless of gender or gender identity, has the right to call this out as creepy. This is not about unflattered people being difficult. This is about people trying to claim pieces of people's autonomy. Forcing a reaction. Expecting a reaction. And if that reaction is not given, complaining about it. I've seen those conversations, those gifs and memes.  They are gross too.

People do not owe anyone being flattered by creepy behavior. This is a boundary breach and a form of stalking.  We are not required to be flattered.  We are allowed to edge people who act like this out of our lives.  The same way wew would walk away from a stranger on the street who does this, we can, should, and will walk away from people on the Internet who act like this. We are not being difficult people. We are honoring our own safety. We have a right and duty to walk away from this and shore up our boundaries.  This is not okay, and it never will be.

Friday, May 9, 2014

Ooh, look, gender police, take two!

Some time ago I wrote a post on being gender policed by a younger male.  I did not give specifics of this. I also generalized quite a few of the events. This blog post is not that exact blog post.  I was quite upset while writing it, and did not save a backup copy. Later, this man started screaming at me that I was a liar, further triggering me, so I took the post down. One of my closest friends, Emily Titon, fielded quite a lot of this situation, so knows more or less the entire story.  

I do not enjoy having to elucidate this here. It is difficult to write about, and I risk becoming re-triggered by the situation.  I have a number of difficulties relating in the disability community due to previous instances of bulllying, gaslighting, and the internalized ableism of others coming out in conversation with me.  This is why I deleted the original entry to avoid conflict, but that wasn’t being true to myself.

This man accused me of LYING (several times, sometimes but not always in caps) because I could not provide direct quotes. He also conveniently did not remember many events--because they did not trigger him.  So this post, written several weeks later instead of the morning after the events (on zero sleep because I could not become untriggered or calm down after a final offense), will not have direct quotes. Part of this is because as a result of this interaction I have left a private group and unfriended two people.  I could possibly stilll find our chat logs, but I would rather not do so as the experience of going back through them would be triggering all over again.

This, therefore, is my personal interpretation of events. In some ways, it will be more specific than the last version of this post.  In other ways, because of time passing, it will be more general. THERE WILL BE NO DIRECT QUOTES as I do not have them.  I will give general summaries of sentiments expressed, sometimes in comically exaggerated dialogue. THIS DOES NOT MEAN I AM LYING. If anything, I am creating a parody of bigotry.  This post is liable to be on the long side.

My first indication that this young man (12 years my junior--and those were a big 12 years for me) had a problem understanding gender and gender policing is when the following happened:

We were discussing approaches to activism. I am a third generation New Yorker and third generation activist, and these two things are related. I learned activism with compassion.  I wrote about it on Martin Luther King day on my Facebook, and I then backdated the entry, so if you need a refresher on my family’s activism, it’s told through the story of my grandfather, an Italian- and English-American Queens native with family as far away as Africa (a fact which probably informed his politics).  

I told this man that I had learned not to go on other people’s walls and correct them or police them.  He said, “That’s probably a female-gendered response.”

Oh, really?  I’m transgender, but okay, kiddo.

I didn’t say anything. Sometimes if triggered, you lose words.  Sometimes if you have disability stuff in common with Autistics/are neurodiverse, you lose words too.  In his words, I was supposed to articulate to him I was triggered. I’ve been mulling over that one.  The thing is, telling him would have only been paying him a courtesy.  Especially as I was struggling with words then.  I just got through it, because being triggered is similar to a panic attack that can ruin and change  your entire day.  Later he told me I had acted wrongly by not informing him.  This is victim blaming, plain and simple.  He is a 21-year-old man with a personal mythology that it upsets him too much to upset someone so he doesn’t upset people.  Would that it was so easy.  But if he really is so concerned with the impact of upsetting people, then basically he should not victim blame or gaslight.  But that did come later, so let’s continue.

There may or may not have been another similar instance after the first triggery experience. It’s now blurry.  I did notice him doing ableist things around me, like talking around me in threads as if I was some kind of intruder among his friends or something.  I was in a private group with him (I have left it) so I spent some time psych-braining about how he interacted with people. I could have unfriended or blocked him after the first incident and was considering leaving the group (I don’t do groups well, especially not anymore), but I was biding my time a bit. I reasoned that he was young and certainly younger people still have room to learn, and with that I left it alone.

Then I came out as trans in a thread in the private group. This person came in to tell me that he had a theory of being able to categorize people’s gender by speech patterns, and that I have a “femme” way of relating events in text. I told him perhaps my female name had leant to this interpretation as well.  For me, I have no cognitive dissonance whatsoever with being pangender but maintaining a female name, because I picked it myself long before I came out. Keeping this name is honoring my younger self.  I have been Elena to my friends for 20 years now, and that won’t change any time soon, although since coming out as transgender I do vastly prefer being known simply as E. The truth is that part of my reclamation of Elena has to do with the fact that some sites refuse to allow me to be known as E.

I discussed my situation at length with the aim of informing not him but the people in the thread who might actually learn something.  It’s possible that I may be too good at switching into anthropologist or psychology brain, because instead of telling him he was wrong, I asked him why he felt I was “femme.”  He then listed several reasons related to my speech patterns and how I communicated things in text.

I am many things. I am a writer, a socially isolated disabled person, and an internet addict. Any of those things can and do effect my interactions online because most are textual.  When I first started to feel transgender-ish, at age 3, I informed my mother that I was going to grow up to be a boy.  (This was not her favorite thing, and the resulting conversations I had with her were not my favorite thing.)  I assimilated into cis female space, but never easily. I was on the outside a tomboy who was queer (notably attracted to women, but not a lesbian).  I didn’t ever fit in with women--many geek girls don’t, though, so that’s not an indicator.  I did note their behaviors, though.  There is absolutely nothing in my experience that backs up this man’s assertion that my being courteous about people’s walls, for instance, is a “female-gendered response.  It’s called basic courtesy and respect of people’s autonomy and willingness to let them have an opinion unless it’s dangerous or something.  Have you ever heard of cat fights? There is an expression because they are real.  If being courteous about information on people’s walls is “female-gendered” or “femme,” then my female parent must be trans, and in fact all gaslighty women must really not be women!  But, see, I’m fairly certain this guy is cis.  He neither grew up skirting transgender issues nor relating to women as a presumably cis woman.  Women (or anyone who has lived as a woman while figuring out trans issues, i.e. me) know(s) women better than men know women.  That’s where tons of self help comes from, so you know I’m right.  This is why quite a lot of women refuse to have that many female friends.  Don’t believe me?  Most women I’ve talked to report that they didn’t have many female friends until at least college age. I’m the same way.

I could tell you a million stories that illustrate how I am not actually femme, just a writer, but I’ll give the salient points: I don’t know what even happens in a salon.  I collected rocks and dreamed of climbing trees as a kid. Spiders, lizards and snakes are my favorite animals. This blog is named after a cornsnake, for fuck’s sake.  (I also enjoy bears. Is that too femme?)  I don’t own a dress. I own one pair of shoes.  I don’t dress for anything other than comfort (although I have a lot of sensory requirements, I will admit).  I refuse to be fashion-policed.  I don’t shop for clothes, or anything else, for fun. (Partly that’s a reality of being poor, but I’m an in-and-out-of-there shopper. I don’t window-shop or do any of that for fun and never have.)

See, now I’m starting to sound possibly sexist, or something,  but all I am trying to do is point out: I am in a female body until I die.  I don’t want surgery. (He said “I was not like other trans people” because of some of this. Well, sure.  Only a subset of trans people get media attention. They may fit a stereotype. That belongs in another post.)  Additionally, my binary did break later in life, partly due to trauma. (Speaking for myself only--I can’t speak for how/why/when other people’s binaries break or don’t function.) Nonbinary experiences of being trans ARE different from that of trans people who have an intact binary.   None of this has any bearing on whether I am “femme” or have “female-gendered” behaviors or not.

I have a few. Not too many though.  But of course I have some--I float around in a nebulous gender soup.  It doesn’t matter, though. By him labeling me, he’s gender-policing me.  He asserted all kinds of things about how he KNOWS female behavior and femme behavior.

You know who knows those things? People who have lived or identify as women.  But even with that being said, any time he’s asserting how I come across, making a point over and over again, that’s gender policing.

So no. Actually, no. He doesn’t know.  The only person responsible for understanding (for the purpose of self-accceptance) their own gender is the person in that particular body. We can try to make people understand, but we’ll fail at times (especially if we are “not like other trans people”), like I did here, especially when I talked to him after the first time I wrote this damn post.  

Because I did talk to him after this second policing session.  I PMed him to tell him that this line of reasoning he was going after was not going to help him, that it was nonproductive to get into this too far as he never knew when he was around trans*, or even just nonbinary folks like me.  He asserted that he understood that I wanted to be known as nonbinary.  He apologized.  But then he blocked me.  He has a reasoning of being overloaded, which is perfectly reasonable, but I had been reasonable with him, letting him know I only confronted him out of respect--which is how I roll. I don’t confront people I don’t think will learn something.

So he blocked me on Facebook and I blogged this the first time. He then unblocked me, talked around me in threads a bit, and then started gaslighting me in PM.  He called me a liar in several places.  (Once in PM and once on a reposting of the original blog post.)  Sometimes it was in caps.  I was re-triggered and I wanted to not be called a liar so I took the post down.  I kept talking to him and he kept saying that we weren’t really compatible with being friends because of communication differences.  Whatever. That’s happened to me before.  He told me that I should have informed him I was triggered.  He related the situation to some kind of error in computer science or other.  

No.  This was policing. It also became gaslighting.  You can ask people who know that I was upset enough (partly due to the fact that gaslighting from other crips feels worse) to take the original post down.  I can only remember ever deleting one other thing in the past 12 months or more--I don’t delete often. In fact, I deleted something else due to a friend of this same person. So now, neither of those people are in my life.  It’s not that I am so conflict avoidant--it’s that I have disability-community-specific trauma.

But the truth is, this still happened, and now it’s blogged again.  Sorry but I won’t be asking his permission to exist, to be transgender, or to figure out what my gender is.  This post stays up. It’s for me, but also for any trans* person who has been gaslit and policed about their gender.  So here it is.

Saturday, May 3, 2014

Systemic Eugenic Thought

This entry is in the category of entries I wish I didn’t have to write.  This should not have to be a thing that is delineated.  But nevertheless, here we go.  Please note examples used in any links on this matter are only the ones readily available and where they are there are many others underreported or unexamined.

I am trying to process a bit of the crud that crept into another entry and made it nonsensical. It’s possible that this entry will also be full of palpable, white hot rage.  But that’s okay.  An entry like this is supposed to be full of well-channeled anger.  We shouldn’t live in a society where I have to write entries like this.

The truth is that eugenic thought has powered society possibly since time out of mind.  Creation of categories, shoving people into them and making one category better than the other category is all the basis for eugenic thought.  Eugenics itself is the theory that with better breeding practices we can eliminate undesirable people. And that is bad enough, as it is the origin of the prison system in the United States as well as the mental health system, draconic as it still is.  There are a lot of very obvious examples, the most obvious of them being Autism Speaks, a 24/7 eugenics propaganda machine actively encouraging parents of autistic kids to hate, harm, and kill them.  There are other examples too, though.

If you think of your disabled child, any disabled child, as less than your other children, congratulations, you’re engaging in eugenic thought. If you think your disabled kid should come to more harm than your other kids, you’re engaging in eugenic thought. If you think of your disabled kid as a burden, too annoying, too hard to handle, bingo.  And it is the position of this blog that if you don't even bother to treat your kids equally on any level, if you abuse one kid more than the other kids, you've officially gone around the bend.  Go ahead.  Ask me how I know.

But eugenics is really everywhere in pretty much every way.  Just look at the way the way the law applies disproportionately to people of color, to women, to  disabled people and people with mental health issues. (As someone profiled by police on the basis of disability I can tell you this is a real thing as well.)  We don’t even have to apply cut-and-dried eugenics to any of these situations because the system is now so air-tight it permeates every aspect of society.  Racism is eugenic. Classism is eugenic. Sexism is eugenic. Subjugation of an underclass is eugenic.  So how many times in society does eugenic thought really come into play?  We play into it every single day.  Eugenic thought spawned the first articulation of eugenics as a social movement.  Society is preoccupied with it at the deepest levels of its institutions and how they are oppressive.  It had to come from somewhere, and it was there and systemic enough already to spawn the first eugenics movements in the world. (America, I'm looking at you.)
Try to be mindful.  You’ll start seeing it everywhere.

Accidental Neurodiversity Training

There have been a few different editions of this post.  I can honestly say sometimes this has been because I have lacked clue. I tried to label this, and I really have no idea how to do that anymore.  What I thought it was is not the thing that it was. Or, at least, it’s not a label I should have really tried to give this experience.  That said, this experience is a joint experience that is repeatable not just with me but other people who have been in this situation and I would now call this my introduction to neurodiversity at the very least.

This post is about a person who was and is pretty special to me, and now I’ve known him for about half of his life.  He’s a very good sport so he originally let me post about this on Facebook.  Here is the story, without any weird labels.

When I was 18, I met a geek guy online. He was cute. He had the most amazing eyes I ever saw. I guess they run in his family and he has this cousin with the same eyes but she was not nice, and you know what they say about eyes. In other words, pretty sure this guy's eyes are amazing because his heart is too. They are most definitely my favorite. I can say that without being creepy because I am not creepy about this person. He and I have gone our separate ways and until this week we hadn't even talked in three years. This week we did start talking again but I was going to make this post regardless.

Yeah. This is that post. The one that I kept not posting because people were all, "Why is she extra weird? And is she racist? Is she even an activist?" (Haha. Let's not try that one again. )

I am not shortening this. Because it is the story of a very large chunk of my life. Anyone here is reading this privileged to see this being shared. Period. Do what you need to do to make this accessible to yourself, or skip it.

I also have permission from the subject. He is a nice guy. He is gentle and quiet. He is not a zoo exhibit. Please be respectful of him. If you are an Aut, he is similar to you, he is also like me. I am neurodiverse enough that I have had a bunch of Autistic people in separate contexts 9 years apart ask me if I am Autistic or not, I go back and forth on whether I am allowed to take this label, though, because it has been used to hurt me and I don’t like to appropriate. Sometimes I take the label and other times I feel strange doing so. As you can see, however, I do take some things as identity bits, and that is unfolding.

As far as my Safe Person (a safe person but my self-identified Safe Person), he seems pretty neurodiverse.  When I knew him on a closer level, I did not label him. We didn't and don't talk in labels. We are people who basically stumbled across something.

When I met G, who I've affectionately called G because words are big and Gabriel for some reason (really beautiful though it was) shorted out my typing brain a bit, he was 15. His parents were having issues. His dad was weird, and stuff said about him made me really uncomfortable. I just wanted to support this geek kid. And I did, for 3 years. Thing about that is, you do that for a person younger than you and they remember it. When you get into some unhappy stuff later on, they will come and ask you how they can help you.

*sensory break*

If that happens, you just let it. You don't think about how 5 years later you won't call him G. You'll call him Gabe. Other people can call him Gabe and it is just whatever. But when YOU call him Gabe it means you aren't calling him G anymore, it means you are annoyed at him, it means things are tense at home. But you know, in the grand scheme of things, I guess I've known G for a very long time now, and the little blip in there where I was Gabe-ing him to piss him off? Eh, five minutes or so, compared to all the other stuff.

The other stuff like him standing up to The Evil One, also known as my abusive parent. Helping me have a backup person and a reason to remember I had a Safe Person and relocating to Boston was safer for me than anywhere she was. "Tell my mother whatever the hell you want to tell her," he said, freshly 18 and one BADASS Philly motherfucker.

Then of course, a year into Boston The Extravaganza, the shine has worn off. I can't watch football here. I can't do a lot of things here, and my mom ruins my first birthday here by showing up reeking of alcohol that morning (around 8:30 AM). Ya know. Whatever. But not whatever, cause I am kinda off my game after that, too. Doesn't matter. Hell pretty much happens, I won't recount it for those who were there. There's G though. Gently saving my life. There are no other words for it.

But then I do keep mentioning this neurodiverse thing a lot too. Right? G. just does what he does. No big words. Lots of empty-ish silences actually, and I would love them if I was not in a total anxiety meltdown constantly. I gotta explain. I gotta make it make all the sense. I gotta geek about it. I gotta just talk about it a lot.

G gets kinda confused and shit and is all like YOU DON'T MAKE SENSE. WHAT YOU ARE SAYING JUST DOESN'T MAKE SENSE.

Those are really big words for him. I didn’t think in terms of neurodiversity or not--and it could just be something else, but whatever it is makes G think in ways I’ve never encountered before or since. I never really thought about it until a few weeks ago, even though I lived with him for five years.  We just did what we did. We got through it.

So okay, that was lots and lots of G saves the world. And that was a lot of what people saw.

What they didn't see was that G was never given any labels because his family life was sort of screwy. Just trust me. I can say it with some authority, and that is all that needs to be said. First children, which G and I are, we get kinda screwed. Parenting is hard. If you are the first kid, things just fall by the wayside. But this was also more. The school system in Philly is full of shit. But still more too. I was kinda scared at G's house. But I knew I had to just, I mean, he'd be scared there too.

And G seemed confused. All the time. For example.

"What do you want to do, G?"
"I don't know."
"I bet you have some idea."
"I don't know."

At first it's really hard to tell if that's because of sort of scary family stuff or not.

You repeat yourself a lot though, just in case at first. Later it is because you love this person so much and the idea of it not penetrating hurts so badly. And that ends up being the thing that hurts too much four years later. When you still don't know. When you've had 5000 rounds of I don't know. You don't know if he knows. And it is okay. Sort of. There's clearly not anything you can do about it one way or another by now if he doesn't know.

*sensory break*

It's kind of screwy. People just see Big Tall Dude, He Does Things For Her, She Could Take Care of Herself Better, She Lets Him Do Stuff.

And yeah, it is, and it's codependent and crap, and you don't have words for it so all you can really do is make sure you are doing a lot of checkins on whether he is okay. The stuff he does, it needs to get done. And yeah, in 2003 you were able to do more, but five years later you're a bit cognitively f'd in the head so if the way to get through the day is help from G, and you check in with him a lot, to make sure he knows what he is doing and he is okay and if magically today he says more than "I don't know" you'd throw a party...that's just life because you love each other.

Or do you? You know? There is a lot that he "doesn't know." You know that he does because of his actions but you are a writer. It is a lil headbreaky.

He doesn't want to talk a lot. You don't want to talk a lot now either. So you just stop asking the questions. Even though it is something you should do, that you used to do, you get a lot of blank stares now and it feels different like he's really tired of it and stuff. Then maybe he's tired of you. And yeah, he gets sort of grumpier. He never used to turn his argh over I don't know out toward other people but he does now. You are a target and it sucks but you have other people to talk to and if he's tired of checkins is it really surprising?

So you just stop asking. Then you don't really know what to do. No one is talking. Until one final conversation. He says something. Then he is so totally confused. But so ARGH!!!!!!!!! He really doesn't say terrible things like this, just frustrated things. But this there are no take-backs for.

Still no idea if he meant it, that is not the point. The point is that was a deal-breaker for ME. We still lived in relative harmony for a whole year as roommates. He is still my Safe Person.

I stopped talking to him for 3 years. That was my idea. Also my idea was to go to him when I went into the Aut community and they knew I was just kinda screwy somehow. I met a bunch of people. Some of them were incredibly nice and some were in the middle and some were just kind of argh mean.  I’d encountered that before but I never went wholesale into the Autistic community very far before. The main thing they helped me figure out, though, were some of the labels for some of my issues that get swept under the rug by the CPers.  And that is great. Some were nice and some were not nice. And that helped me, too.  It helped me find words also for what had happened with me and G.

That's when I figured it out. That all those checkins and stuff, I am not even really sure still if G knew how much I did them, and how much the inevitable answer made me go argh. But that's when I realized that it all meant something, and it was a big something. Two crips who met not intending to meet another crip, who had similar brains, not perfectly aligned but complimentary, and the moment you know it is all worth it is when you can go back to this person and explain. There is no nervousness because G is your Safe Person. It doesn't matter if it takes him a few days to reply because you know you are gonna tell him something that will take a little bit for him to be okay with talking about. You know him. You just know him. And it doesn't matter what happens now. Out there in the big world of Boston is a Philly guy. Nobody coddled this kid for five minutes. He could rip apart a Southie motherfucker in about five seconds. And he chooses not to. He rides bikes like it is the most amazing thing in the world that bikes exist. He is an amazing cuddler. And he really wants to understand what the fuck happened to you to land you back in the hospital. To give you flashbacks. He wants to know where are you really and when will you be okay to talk more.

He is my Safe Person. The rest really does not matter. I would say that I learned a ton about neurodiversity, first from him, then from some of our roommates who were crippy, and now from the Autistic community.  I’m pretty grateful to them and also really, really protective of them, not because they need me to be some kind of savior but because I think knowing G and some of the other denizens of what I deemed Dot Gimp House helped me figure out a lot of things, like code switching for different kinds of people, which I am fairly good at, but also my own damn self.  I’ll always be grateful to the neurodiversity movement for that, when others have been significantly less inclusive, especially on the crip side.

Sunday, April 27, 2014

On Being an Inventor of Words

I’ve been a writer since before I could read.  I’m still not exactly clear on how this worked, but I can distinctly remember the conversation I had with my mother about the fact that she wanted me to write about my day even though all I knew were the ABCs.  She sat me in front of a typewriter and told me to just find the right letters, so I reminded her I couldn’t spell things either and she insisted that I could figure it out.

That’s pretty much how my childhood went: Figuring it out and raising myself.  I was scared of people, especially her, so I made up stories in my head nightly to go to sleep.  I only started writing things down around age 10, when I started writing poetry before school, which functioned a bit like meditation. I wrote nearly every day for six years, before an unfortunate incident with a very bad teacer ruined poetry for me.  

This is not an entry about that. This is an entry about being a writer, and what I do with that these days even when I can’t write.

I invent terms.  I usually invent terms for things which are really frustrating in order to make them make more sense.  So, when I started to have more bad days than good for a while in terms of fatigue and what my body would allow me to do anymore, I invented, “going on safari,” for those days when getting out of bed/going into the other room/transferring from your chair were so exhausting on so many levels that it felt like going on safari.  That phrase stuck, and I’ve passed it on to many a crip, and I wouldn’t be blogging about it unless I knew that by doing so I was passing it on to yet more crips.  You can have it. It’s fine.

One I invented more recently is, “Psych brain.”  This is how I describe my brain.  I have a degree in psychology, and in getting it I realized just how much I didn’t fit inside the field.  But I have an inherent interest in the kinds of research projects psychologists do, and I run little hypothetical studies in my head or among my friends for fun.  Like the time I polled a bunch of people about what really happened in Newtown, CT, recently, after I met a new friend who was from there.  As expected, most people couldn’t really remember what happened there, and I helped them backtrack.  “What happens in Connecticut?” “I don’t know, it’s in New England.”

Yes, and it even borders New York.  Nothing ever happens there, don’t worry.

But I’m getting ahead of myself, here, because Connecticut and what actually happens there deserves its own post. The point is, I found exactly one person who knew anything much about Connecticut, and he’d already been my friend for well over fifteen years.  Instead of getting annoyed, though, I’m just fascinated by this kind of weird mind-thing that people’s brains do.  I am endlessly fascinated by the human mind, and how to help people because helping them fascinates me.  I think about it all the time and how I can better help my friends.  And I make myself available to counsel them through ableism, health woes, stupid academic politics, and financial crises.  I know enough psychology that I just learned how to talk to people and that’s what I do.  I find it comforting.  I think about these kinds of issues so much throughout my day some people might consider this a stim--not the counseling people part, but the “how can I make this better, what would make this work right?” It’s very calming.  

I call this having psych brain.  It’s a damn sight better than a lot of other labels people have given me.  You can use this one too, if you like it.

So I guess, some years back, you could say I conducted a little psychology experiment.

I had been watching a lot of Babylon 5 with Phillip, the  guy who knows more about CT than anyone else I’ve met who doesn’t live there.  And one day I was turning over in my head one of the interesting factors in the show. From these musings would come a term.

Babylon 5 was a sci-fi show written by J. Michael Straczynski that ran for 5 years from 1994-1998. It spawned a number of TV movies and spinoffs, but ultimately several of the cast members died and this stopped Babylon 5 from becoming any bigger than it was already. One of the actors who died was a crip named Richard Biggs.  He used his fame to propel forward education for deaf kids.  I fell in love with his character of Dr. Franklin and am still sort of saddened that this really cool actor isn’t with us anymore.   So, Babylon 5 left a bit of an impression on me.  I sometimes wonder if Biggs was ever consulted or knew the people who consulted on this huge, honking disability parallel that was in the show:

On the show, there were natural telepaths.  Sort of like XMen, though, the ability wasn’t considered an ability, really.  There were two types of telepaths as far as the government was concerned.  The ones working under government control, and the ones who refused and were then heavily medicated, sci-fi style, to control their abilities.  The medication stole the lives of the telepaths who didn’t kowtow to the government.  

Over time, though, it’s revealed that there is another faction of telepaths, the rebels.  They’re unmedicated and don’t work for the government.  And what better set of people to outsmart the government than a bunch of telepaths, or “teeps?”

I won’t spoil the show for you, except to tell you that this huge parallel reminded me, and still reminds me, of my crip friends.   I was thinking it over one day when it came to me: What would the CPers do if they knew this story and how many parallels there are to disability?  Would they like the term ceep?

Some didn’t.  Some told me I was totally stupid for creating it.  But some did.  It’s been turned into more than one Keep Calm meme.  And some people, they can’t get enough of this word.

I told the story once, and I just did what I usually do, a little, “I’ll just leave this here.”  I watched what happened as the memes started being made.  I watched who used the term, and what they did with it.  For a while.  One thing I noticed was that people got really confused really quickly about where it came from, and some credited the people who made the Keep Calm memes. I thought this was funny, because I love the Keep Calm meme.  It’s actually a meme rooted in the history of World War II.  I highly recommend you look it up, because the story is a good one.  But I am a quiet person, especially when I could be watching psychology in the making. So I just noted that people were highly ready to take credit but didn’t really remember where it came from.  I didn’t say much.  I’d told the story one time.

Eventually, I left behind the CPer community, because my CP is not “mild,” and I find the propensity for the CPers to insist on this identifier ad nauseum kind of nauseating.  I let them keep “ceep.”  And they can still keep “ceep.”  When I use it, I do so ironically, as a commentary on the dangers of groupthink.  In the end, I’m the one who could tell the origin story of “ceep,” because I created it, because I care about disability parallels and spent two years of my undergrad career piloting my own disability studies work.  During that time I wrote a thesis on disability and body image, studied eugenics, and taught myself film criticism to critique 20 films from around the world for one paper on disability representation in world cinema.  It was a while ago, but it means I know some things, and one of those things is how to find disability parallels and common ground with disabled people.  

But not when they’re trying to out-”mild” each other… so I let the CP community go, and I let them keep “ceep.”

I’m too neurodiverse for them, anyway.

Sunday, April 13, 2014

Missing Keys And Other Things: How I Went From Frantic All The Time To Much More Zen

This was not the first entry that I planned for this blog, besides the intro stuff. But then I kept saying, “I’m gonna make this a FB post,” and not doing it… so here we go… This is good to be blogged because it will help more than just me and my two friends who were in a discussion about it.

So, keys and I especially do not get along. Only once in my life did I have a suitable small bag (never a purse) where I developed a system for placing my stuff.  Systems of placing things in bags don’t really work for me because generally that feeling of “OMG IT IS LOST!!!” prevades everything that I do when searching for things. Now imagine that I was a very anxious college student.  I was a workaholic. I just wanted to know where my keys were, pretty much at all times, so I could go back to being a workaholic academic.  So here’s how this would go:

*checks for keys before leaving the dorm* Oh, okay, they’re right THERE. Okay, let’s go. *leaves dorm*

At cafeteria: I have my food but what if I dropped my keys? OMG I have NO MEMORY of where in my bag they are SHIT ARGH now we have to CHECK FOR KEYS. *roots around in bag for 5-10 minutes, questing everywhere and not finding keys, panicking* SHIT. Oh. Okay. There’s the keys.

About half an hour later I would have to repeat this “in case I dropped my keys.” Yeah, are we seeing a wee bit of OCD? Well, my mom is a wee bit OCD so there ya go, but the cool thing is I STOPPED DOING THIS!

Here’s what I did:

First, I stopped using traditional keys, which is only a positive for me. If you like keys, use ‘em. For me, my wrists don’t work properly for turning them fast enough so I did a lot of dying to pee, standing with my key outside of my house, trying for the umpteenth time to turn the damn thing, and trying also not to explode. Yeah, I hate keys. So I moved to this place, and there they offered me a garage door opener style thing that unlocks and opens my damn door. I am NEVER going back to keys. Ever again.  Yay suddenly realizing access has been granted when you never knew you needed that access before.  Whee! It was pretty sweet.

So anyway, now I have these garage door opener things, and I even have two! (I didn’t always have two. But I have two right now.)  If you are in posession of keys, though, just generalize this to use of keys. If it’s cell chargers for you, then that’s your perpetually missing thing.  For me it was always keys, shoes, and hairbrushes. OMG with how much of my life I felt was wasted looking for these things!

For keys and hairbrushes, I got more than one.  For shoes, I dumbed down my wardrobe to one pair….but then again that works for me because I use a chair and have less use for shoes. I was never a girl who liked to have a lot of pairs of shoes. Shoes are kinda embattled if you have a mobility impairment, or they can be. Do I have shoes that mostly fit? Yes? Okay, we’re done. ;)

So, find the secret formula that works for you of more-of-these, but less-of-these.  Then stash the extras in a designated place.  I tend to buy cell chargers in batches of 2-3.  I have one in my bedroom at all times and one available to be used with my computer USB port.  Then when I am lucky I have an extra for when one or the other craps out. As far as my garage door opener, one has a home in my bag at all times and one is by my bed at all times.  This means that I can open the door while lying down but I also don’t have to take that one anywhere, it’s always by my bed (or, occasionally on my desk, but basically inside the house.)

With this system, I calmed the hell down.  One set of keys is always in my bag, right? Also, my bag has a normal set of keys too, attached to a key chain, for the normies to go, “Oh, look, your keys are in your purse!” ;)  (What can I say, they provided both…it’s a good visual reminder: Keys are in the bag. Relax.

As a result, I stopped freaking out and checking every 30 minutes. Keys are in the bag. I double check before I leave, and because the garage door opener is big (a big keychain will also work, or a lanyard or other around the neck kind of thing if fumbling in a bag doesn’t work), it’s easier to find. I still pull it out to make sure that’s what I’ve got my hand on, but this ultimately means I only check 1-2 times a day, not every 20-30 minutes while my agoraphobic ass is outside in the very stressy big blue room.

For objects other than keys, they still go missing on me even right in front of my face. For situations like that, I have a few systems: I let anyone who works with me or deals with me regularly know I have eyes that have trouble focusing and skip over common objects. I let them know NOT to move anything, even if it looks messy. Anyone who cleans at my house is supervised by me and is instructed to clean but put the messy piles back because I know what the hell is in the messy piles, thanks.  And if I still can’t find something in my messy pile system (something I know many crips use), then I “borrow the eyes” of a person I trust not to get so super curious about what I am looking for and why. They just know what it means when I say, “I need to borrow your eyes,” by now. It doesn’t mean “And then you get to open my mail,” or “And then we get to have a discussion of why this is going on.” It just means, “I need to borrow your eyes.”

It works for me.  Feel free to add in comments what works for you. :)

Friday, April 4, 2014

This One Time at Band Camp, I Mean College

At my weirdo college, they have recently decided that standardized tests mean nothing at all, or something, and it was already a college full of anxiety-prone people with ADD and hyperfocus. We planned an individual research project for every single class and then wrote a large research paper in addition to whatever normal five-paged papers we wanted to do.

The only time I ever dropped a class for too much research was when I tried to take Italian level 2 and I realized that in addition to all the drama of learning a language (which involved a shit ton of extra work because this was Sarah Fucking Lawrence style which meant extra everything at all times, so basically everything involved with Italian 1) there was also a 20 page paper expected. I mean, that was SLC in a nutshell, but basically I was all, “Talk to the Hand,” and dropped the class.
Anyway, I love research, and that was the ONLY time I ever balked at it.  One time, though, I was interviewing for a class at SLC, which you also had to do there, and I told a teacher I wanted to research the importance of snakes in world religions.  He totally axed me from the potential roster.
In honor of this blog, though, I’m totally gonna do the research for this damn paper I never got to write. I won’t put it in academe language, though, because I forgot how to do that. Sort of on purpose. But I’ll just quietly do the research, because the Internet is big now and there are a lot of interesting books.  And I like snakes.  And that will be a cool side project to make me feel smart in the face of a lot of bullshit.

That’s pretty much who I am, really, someone who soldiers through being underestimated, pigeon-holed, mistreated, and legally discriminated against by listening to a LOT of music, doing a LOT of research, and writing irritated letters and FB posts. ;)  A couple of irritated letters are turning into notes and phone calls that nobody is expecting.  So I’m busy with that, and should not blog until the notes and phone calls are kinda if not done then at least in progress.  That doesn’t mean that’s going to be the case, though.

Stuff that’s gonna be on this blog: Irishness, writer and reader geekery, snakey geekery, science geekery, Jewishness, disability, word nerdness (coined phrases), bears, snark, sarcasm, probably some stuff about cats because this is the Internet, and possibly some plugs for my other blog that is not my personal one in cases where it is relevant to the discussion.

I’m trying to do Facebook less and Practice Being a Writer. I have this series I am planning, you see, and I need to exercise writer brain.

ETA: This is a copy of a blog that I was keeping at Wordpress but that wasn't working.  I have my disability and faith blog at Wordpress and this blog here at Blogspot, despite the fact that I really hate Google. It's here for the moment, anyway, because I like the features of these two sites, and like sites like LiveJournal/Dreamwidth worse.

Tuesday, January 21, 2014

Martin Luther King Day 2014: Stanley Rygor, My Activist Grandfather

in honor of Martin Luther King day, I would like to tell a story about my family--specifically my grandfather. I learned this story at Christmas this year.

In my family's home, civil rights pioneers of the time were in pictures all over the house. Martin Luther King, Kennedy, etc. There is an awesome picture of my family with a picture of Dr. King "photobombing" the photo. I will post it in comments.

My grandfather Stanley is a very principled kind of guy. He's the kind of guy who will strike up a conversation with you, and if he finds out you have nowhere to go where you are loved, cherished, and appreciated, he will bring you to the next gathering at his house. It doesn't matter if that's Thanksgiving, Christmas, or somebody's birthday party. There is an open door policy at my grandparents' house for anyone who is struggling to come have tea. I know, I know, in the middle of New York and everything?

My grandfather is a New Yorker. He has lived on the same block for the majority of his life. He taught me what integrity and openness really were, not just once but about a million times. At Christmas, he had another lesson to teach me. He engaged me in conversation about the 1960s. He told me about sneaking into the back of NAACP meetings and hiding in the very back row of seats. He told me about the day that it was decided by the people presiding over the meeting he attended that he should be allowed to come to the front, with them. (My grandfather is white.) Soon, my grandfather was a very active participant. He was so active, that he was bringing the entire meeting into his house. He was also conducting research in which he would be paired with another woman (not my grandmother) and try to get an apartment as a white couple. They could always get an offer of the apartment, even if a black couple sent from the ranks of the NAACP meeting could not receive the same offer. (i.e. every time.)

Although it took some time for him to get there, my grandfather later took this same basic belief in human dignity and applied it to GLBT rights. As of my last understanding, he has two GLBT children plus me, his granddaughter. I can honestly tell you that it completely meant the world to me when I saw my grandfather see the light on GLBT rights. I am extremely grateful to have witnessed it, from both sides, even though he is not my father. Technically, I am not sure what my grandfather knows or doesn't know about my status as a GLBT American but I can tell you that what is important is what I know about my grandfather. We don't agree on every political issue but he taught me to always be warm and welcoming to people, even when you might be struggling that day yourself. I do not always uphold this--I can have visceral "no way" reactions to people, and I will honor those too. I have been through enough in New York, Boston, and online, that to not honor my "inner ding" on that stuff would be really, really detrimental. But that said, I try to keep an open mind about most people, and I have people around me from a variety of political persuasions and religious or spiritual ideologies.

As long as you respect me, I respect you. My grandfather taught me that. I've honestly never met a more respectful, genuine guy. On this Martin Luther King Day, I am honoring Dr. King, but I am also honoring my grandpa Stanley because he deserves to be known as a guy with deep and abiding principles who has done a ton of good in the world. I am honored to be a part of his family because he showed me how to demonstrate pretty much unconditional love to any New Yorker he could find.

That's what New York is about to me, and it always will be. NAACP meetings in the home of a white family at the dawn of the civil rights movement. How much more melting pot can you get?

Stanley Rygor, I salute you.

Happy Martin Luther King Day, all.:)

ETA: As a postscript to this entry, it came to my attention through the retelling of this story that in addition to doing this activism in 1960s NYC there are also stories of my grandfather doing comparable activism in Rhodesia, where we have family.  Although I haven't heard the full story yet I hope to one day soon.