Posted in Values & Ethics

Valour without renown.

Painting of Éowyn and Aragorn from Lord of the Rings.

“A time may come soon,” said he, “when none may return.  Then there will be need of valour without renown, for none shall remember the deeds that are done in the last defence of your homes.  Yet the deeds will not be less valiant because they are unpraised.”

J.R.R. Tolkien. The Lord of the Rings (p. 784). Harper Collins, Inc.. Kindle Edition.

I am taking this quote entirely out of context, because the words valour without renown have been floating around my head a lot in recent years without context, and finding their own context within the world I find myself living in.  So don’t expect literary analysis here, nor any take on these words other than my own.  Which is both larger and smaller in scope than the original context.

Valour without renown seems on the face of it to be talking about courage — possibly especially battle-courage — without outward recognition, without going down in history, possibly even without a history existing to go down in.  And that is one piece of it, one way it can happen.  In a broader sense you could talk about courage in general, without praise in general.

But there’s one thing that this keeps distilling itself down to for me, with diamond-like precision and clarity.

It’s doing what is the right thing to do without any reason or incentive other than it being the right thing to do. Not just courage, but any right thing.  Not just recognition, but any sort of outward motivation, or any expectation of reward of any kind.

This is both simpler and more complicated than it sounds.  The hardest thing you can do but from some perspectives, easier than many of the alternatives.  Easy to describe in three words, and impossible to describe even if you had infinite words.  Not contradictory at all, yet good at producing sentences like these ones when you try to approach it wielding language.1

It’s also one of the most important things any of us can learn right now.

Then there will be need of valour without renown… Yet the deeds will not be less valiant because they are unpraised.

J.R.R. Tolkien. The Lord of the Rings (p. 784). Harper Collins, Inc.. Kindle Edition.

It’s no secret that the world is extremely messed up at the moment.

And my friends and I, we’ve all been noticing patterns in how it is messed up.  Patterns that we have trouble putting into words.  My friend’s cat has cancer right now, so maybe it’s for that reason that the word malignant comes to mind so strongly.  Or malevolent, or just plain evil.  As in, things that feel more like there’s a whole pattern of nasty forms of intent behind them than, say, random forces of nature seem to have, no matter how brutal.

And most of us are at a loss as to not only how to describe such a thing, but what to do about it.

One fortunate thing about the world is how many and varied the things within it are.  People alone make up billions of variations on those things, and there’s lots of things in the world besides people.  For each one of us, at any given time, there are many good things we can do for the world, and many possible ways to go about doing those things.  Some may be better things, and better ways, than others.  But which one is the best choice varies based on timing, context, person, and every possible way the situation can vary.  Sometimes there are more choices than others, sometimes there seem to be few or no choices, sometimes all the choices have terrible consequences.

But there are always many ways to do the right thing.  And each one of us can be a part of doing that.  Sometimes it’s something seemingly tiny and insignificant.  Sometimes it’s something seemingly huge and obvious.  Sometimes it’s both, sometimes neither.  And almost always, in any situation, there are many choices.

And telling right from wrong is rarely as easy as stories make it out to be.  And very few things are all right or all wrong.  And in very few cases do we learn the full consequences of our actions, either at the time or even in hindsight.

But we still should be making the effort.  In times like these more than any.

I’ve talked about this before from time to time.  Mostly in the context of death.  Personal death, death of a culture, death of a species.  But death.  Destruction.  Even the “end of the world,” as most people see it.  Situations that seem hopeless.  Where it’s tempting to say that trying to do the right thing is pointless.

It’s at those times that doing the right thing may matter more than any other time.

If the way you treat someone right now matters, it matters just as much when you are thinking about the fact that one day both you and the other person will be long dead and nobody living remembers either of you.  It may matter even more knowing that.  So why is it that when people think of ‘hopeless’ scenarios, they think that what they do doesn’t matter in light of their own death or the extinction of their species or some other large or small catastrophe? 

To me, it matters more, it always matters more, knowing we won’t always be around.  There’s always a responsibility to other people in the now, even if history as we know it ends tomorrow.  There’s always a responsibility to the people and things that come after history as we know it ends. 

Because the world is made up of so much more than ourselves alone.  And the world functions as all of us acting on each other.  Not isolated people or cultures or species floating around as individuals with no effect on the world around us.  What we do always matters whether other human beings ever seem to notice or care.

And that’s just one tiny piece of why this ‘valour without renown’ thing matters so much.  It’s the part I’ve described the most before, the part I have the easiest time putting into words.  And that part isn’t easy to put into words.

One of the most important things we can learn is to be motivated enough that if it ever comes down to it, we can choose to do a very difficult right thing to do, utterly regardless of what reaction the world around us appears to have to it. 

Sometimes it’s difficult because it’s something huge and scary.  But sometimes it’s difficult because it’s something seemingly small and insignificant when we’d rather make a grand gesture of some kind.  Sometimes it’s difficult because there are so many right things to do it’s hard to know which one to choose.  Sometimes it’s difficult because it’s hard to tell what the right thing is, or even if there’s anything you can do that’s right enough to do it.  Sometimes it’s difficult because it feels like doing nothing, even though refraining from action can be just as significant and important as acting, sometimes.  Many things can make it difficult.  But everything makes it worthwhile to try.

And trying is the most any of us can promise, I think.  We can say we’d do the right thing, but until we’re in the situation, we don’t know what obstacles we’ll be up against, from within and without.  We don’t even know if we’ll be aware we’re in that kind of situation at the time.

But we can try.

We can make the effort.

That’s all we can do.

And that’s doing a lot.

But hard times, times that people think of as hopeless, those are the times when we all need to be thinking about how to figure out a right thing we can do, and do it to the best of our ability.  Regardless of outward consequences.  A lot more depends on that than people sometimes realize.

And that’s actually a good thing.

Believe it or not.


1The Tao Te Ching sums this kind of thing up pretty well:

The bright path seems dim;
Going forward seems like retreat;
The easy way seems hard;
The highest Virtue seems empty;
Great purity seems sullied;
A wealth of Virtue seems inadequate;
The strength of Virtue seems frail,
Real Virtue seems unreal;
The perfect square has no corners;
Great talents ripen late;
The highest notes are hard to hear;
The greatest form has no shape.

Lao Tzu, Tao Te Ching, translated by Gia-Fu Feng & Jane English
Posted in Speech

Shitty speech. Kinda almost literally.

So I can get shit and shit into the shit, so I can shit the shit into the shit.

Me, just now, out loud.  I was actually trying to talk myself through taking some meds.

I said at some point I’d write more about speech.  That’s an example from a few minutes ago of using entirely cuss words and what I call “corner words”, to create a sentence that makes sense to me at least.  This isn’t fluent speech (which I have sometimes these days), this is closer to what my baseline speech has been for a couple years.

What a cussword is is self-explanatory.  Corner words are what I call words that “fill in the corners” of sentences.  I know a lot of phrases that use corner words, that I utter as whole phrases.  (Like “so I can” isn’t three words to me, it’s one word.)  This can allow for a surprising approximation of fluency under the right circumstances.

If you’re wondering, this sentence actually translates to “So I can put hydrocortisone and propranolol into the cup of meds, so I can put these meds into the feeding tube.”  It only makes sense in context, obviously.

Cusswords are not just tics for me.  I have cussing tics.  I also have spontaneous cussing (like the kind just about everyone has).  And I seem to have the use of cusswords as all-purpose placeholders. (I don’t have any of these things all the time, but when I do, that’s how it plays out.)  There’s a reason for my blog title.  Well, lots of reasons, but this is one.  I cuss a lot.  It’s my most reliable spoken words.  Sometimes my only ones.  That goes over really well.

Putting meds into my feeding tube.
Putting meds into my feeding tube.

Posted in Being human, cats, language

Eighties computer memories: PAWS

People often ask me how I learned to type so fast.  I don’t think they’re prepared for how normal my answer is (nor do I  think they’re always intending to ask me the same question I think they’re asking when they say it).  Because I tell them, and then I later hear it getting repeated in forms so garbled I can’t figure out how they came up with it.

It really goes like this:

I was in mainstream school for grade school (went to a public school up to fourth grade, private school repeating fourth grade then after).

I learned to touch-type the exact same way every other kid in my class at my second school learned to touch-type.  I just happened to do it more often and more persistently than most, for lots of reasons.  We had little patches we could get for learning and passing tests for different keyboarding speeds.  I practiced at the same computer program everyone else did (except much more constantly than anyone I met), until by the time I left that particular school I had a patch for 120 words a minute.  (They started at 20 or 30 and you worked your way up by 10s, if I recall correctly.)

Screenshot from Microtype Paws, with a picture of a keyboard, a cat with a smiling face, the practice line “He had cake and cola near the lake,” and a speed score of 140 words a minute.

There were probably a lot of reasons I did this more often than most kids.  But the main one was that I really liked cats.  And the computer program  (called Paws) that taught us typing was cat-themed.  That’s really all.  That and I enjoy things other people often find tedious or repetitive, and I have the potential for really good muscle memory.

But seriously?

It’s not complicated.

I just used a computer program I happened to be really drawn to.

Over, and over, and over, and over, and over, and over, and over.

For years.

And I had the right combination of skills, interests, and opportunity to benefit from that constant repetitive practice.

Also, I didn’t have an Apple at home, so I couldn’t use the computer program at home.  And, as I said, I loved the part about there being a cat.  So I played it like it was a game, and I worked my way up the speeds until I hit 120 words a minute.

I wasn’t the fastest kid in school by any means, either.  I was up near the top but there were a couple kids who got up to 130 or 140.  Which are speeds I can do now, but not then.

People seem to expect me to have been in some kind of 100% disability-segregated environment my entire life (no) and to have always had the exact same combination of abilities and difficulties they see at whatever point in time thy met me (no, no matter what those abilities are).  So somehow I tell people I learned to type using a computer program with a cat in it, and it morphs in their head into some weird story about a program (as in “special disability program” — no) that taught me to communicate (no) using an extra-special keyboard (no) that was decorated with cats (no).  Or things along those lines.

No.  I went to a grade school/middle school for a few years, that had a very nice computer lab full of Apple IIe and IIGS computers (I loved the IIGS keyboards, they had relatively thin flat keys that were much easier on my fingers than the big clunky IIe keyboards).  We didn’t have Apples at home so that in itself was a novelty.  I spent a lot of time in there playing the same keyboarding game that all the other kids learned to type on.  I just spent more time doing it than most kids did.  And, as I said, had the skills and opportunities to make use of that practice in a way where my performance improved with time.  And that’s really all there is to it.

Oh also, Paws had a combination of different typing games.  There was usually a tutorial, some stuff typing the specific letters you were learning, some stuff using those letters in words and sentences, and a few different games involving the cat himself.  We also had to, at more advanced stages, do typing tests using a part of the program that timed your typing on a full screen for a certain period of time, typing entire paragraphs.  That part annoyed me a bit because it was one of the few parts of the program where the cat wasn’t pictured.

I suspect Paws is far too slow and retro and uncomplicated for most modern kids when it comes to computer games in general, but I really don’t think it’s in any way lost its capacity to teach touch-typing.  And I think I’d still enjoy it if I was trying to learn.

Also here is an emulated version of Paws 1.1 on archive.org if you want to try it out.

And just a reminder; Being disabled doesn’t mean your life fits into some kind of Template For Disabled People Only.  In fact, it never does, although some of us hide that fact better than others (and some have it forcibly hidden for us), and some of us appear to resemble the existing templates more than others.  But nobody actually fits the Official Disability Templates 100%, and most of us don’t even come close.  When most disabled people say computer program we mean the same thing everyone else means by it, we don’t mean special disability programming ™ that happens to be related to computers (although there’s plenty of those in the world too).  And unless we have some particular reason that touch-typing isn’t something we can learn, and unless our disability involves our hands in certain particular ways, then if we can touch-type, we’re likely to have learned touch-typing in any of the huge number of ways that everyone else learns it.  Which in my case was Paws.

Posted in Nature, poetry

Through Our Roots

I keep my boughs from growing
On the side you stand
So our branches won’t clash
Or fight for the sun

Your branches batter mine
Demanding more, more, more
We live in a state of siege
We strive for a state of love

I can only love you through our roots
Which nourish and protect
Without hindrance or distraction

I turn away
So I can love you
Where your grasping limbs can’t reach

And still
Hard and swift
Your branches grasp

And still
Swift and sad
I turn away
And dig deep

Mel Baggs, written gradually in hir mind & on paper between roughly 2013-2018, for someone sie’s known most of hir life
A large network of roots underground below larch seedlings.
A large network of roots underground below larch seedlings.
Posted in Californication, culture, family, history, music, Okies

Okie Country Song: “California Cotton Fields”

It’s nice to find Okie-themed songs that aren’t by Woody Guthrie.  Not that all of his were bad, but a lot of us have mixed feelings about him for all kinds of reasons both good and bad.  (Mine are mostly around the fact he made a living off making fun of us as much as anything else.  But tempered by the knowledge that is making a living in a situation where especially at first he had no guarantee of one.)

Anyway as far as I know this is just a straight-up story from Merle Haggard’s life.  I’ve always liked Merle Haggard’s music.  He was one of the pioneers of the Bakersfield Sound, basically Californian country music, mostly Okie in origin, that sounded very different from Nashville either at the time or since.  Bakersfield being one of the largest cities in the San Joaquin Valley where the Okies lived, and one of the big centers for country & western music in California. This is mostly about the way people from Oklahoma and surrounding states, largely but not entirely during the Dust Bowl and Depression eras, were lured into California with promises of a standard of living that didn’t pan out.  A method of getting a cheap farm labor force into the state that hasn’t changed much. 😦 My family got lucky, after some time in the labor camps they were able to buy a series of small farms (one at a time, not owning several at once!) they spent the rest of their lives in debt over before being pushed out of farming altogether.  Most Okies didn’t even get that.
California cotton fields.
Posted in Uncategorized

Correction to recent post.

On the post where I mentioned an old blog post on a deathling blog.  I think I attributed it to Caitlin Doughty because it was her twitter I found it on.  It turns out not to be her after all.  Someone posted a full correction to all the things I got wrong about who wrote it, who actually died, and so on.  I feel really bad about this on many levels.  One, that I got it wrong in the first place.  And two, that all I can do even now is post this  I can’t go back and correct it.  I can’t respond to the correction directly — but thank you for telling me!  I just lack the spoons right now cognitively and physically.  And this sort of mistake is part of the combination of being cognitively disabled and pushed to nearly my breaking point lately.  I know everyone makes mistakes.  But mistakes happen for different reasons and that is the reason for my mistake here.  And this kind of mistake will keep happening because there’s not a lot I can do to prevent it.  It has nothing to do with being careful, or how much I care, or anything about motivation.  It never has had anything to do with that and it’s not going to start having to do with it now.  I’m just going to mess up in certain areas, over and over again.  So I’m posting a correction.  But know that i can’t always post my correction, I can’t always screen comments, I can’t always post comments, and I certainly can’t avoid this particular kind of mistake.  So these things are going to happen and I’m not even always going to be able to do this much, so I wanted you to know it’s not because I don’t care.  Hell, I can’t even do categories or tags on this post.  All I can do is this.  What I’ve done, what I’m doing, right now.  This is the most I can do.

Posted in Death & Mortality Series

Caitlin Doughty on death positivity, grief, and deaths that are not beautiful.

Caitlin Doughty is one of the most obvious faces of death positivity and the Order of the Good Death.  And she wrote a really good blog post that I only just found out about:

Death Positivity in the Face of Grief

Any bolding in the following quote is mine, for emphasis:

I met my partner when I was 34. He was different. I was different. Instead of looking at each other with that half-cautious raised eyebrow, slightly uncomfortable thing people give you when you’re just being your normal strange self, we relaxed around each other. We spoke the same language. Our early courtship days were full of discussions on religion, fears of death, the cultural intersections of personal loss and addiction. We talked about death a lot. The first time I saw him naked, I told him he had a great body. He said, without missing a beat, “thanks. It’s a rental.”

Eight years ago, I watched him die. He drowned on a beautiful, ordinary, fine summer day.

My understanding of death as a natural process did not help me. My familiarity with death rituals and funerary art and the darker, harder aspects of life did not make his death – or my grief – any easier. Accepting that death happens can’t make death okay. Not Matt’s death, and not deaths that many in this world see.

I don’t think it’s intentional, but I think a lot of what we have in mind when we think of death positivity is death that happens at the end of a normal, natural, expected western lifespan. In those kinds of deaths, you get to be sad, yes. But it makes more sense, in addition to that sadness, to lean on our ideas about the cycles of life, of the beauty in a life lived well. Death positivity feels really congruent in the face of those kinds of deaths.

But that’s not the only way we die.

Sometimes death is not beautiful. Sometimes death is not normal. Sometimes death is wrong.

Caitlyn Doughty, “Death Positivity in the Face of Grief”‘, Order of the Good Death

I am really glad she is writing about things like this.

The topic reminds me in some ways of my recent post, Everyone’s Death Belongs to Them Alone: What Octopuses and Hospice Can Have in Common.

Except that I was mostly dealing with the ethical and power-related issues involved in working in the hospice or other parts of the death industry.  And she is dealing with the topic on a more personal level.  But both of us are trying to get at something about the way that standard death positivity alone can fail people. 

The common theme I noticed 

Another quote from her article:

There’s a weird, clanging disconnect when we try to apply what we know as death positive people into the gaping open wound of death itself, especially the “out of order” kinds. Accidents and natural disasters can’t be treated as a “natural process.” Hate crimes, gender-based violence, deaths hastened by lack of access to health care, death created by acts of war or targeted genocide – we can’t claim those deaths as beautiful. We can’t use our standard language here. Talking about these kinds of death – and the grief that comes with them – is one of the last real taboos.

What I hear from people grieving losses from these kinds of death is that being friendly with death – even being deeply interested in it as a cultural exploration – feels wholly irrelevant to their grief. A mother whose 14 year old son was killed by a drunk driver told me recently that the death positive movement felt “too hip to be of use.” That the art, the cafes, the memes about day of the dead, and roman crypts, and bat tattoos felt flippant in the face of what they were living.
I hate that. And, I get it. Without meaning to, we can alienate or injure people going through some of the hardest times of their lives.

Caitlin Doughty, “Death Positivity in the Face of Grief”, Order of the Good Death

Again, I am glad she is writing all this.  As a funeral home director, I’m sure she sees more than her fair share of these situations.  And I have always admired her ability and willingness to go deeper than a shallow understanding of death positivity would allow.  She may have helped define death positivity as a movement, but she thinks for herself.  I may not always agree with her, but I always learn something from her.

And while people may like to caricature her, and the movement she is associated with, as a goth kid who doesn’t understand Real Death?  In reality, despite all the images associated with her in people’s heads, when it comes to dealing with death and grief she is extraordinarily sensitive to the experiences of other people.  She doesn’t shy away from difficult topics and difficult situations.  She doesn’t go in for easy answers.  If you are walking in the dark, she is someone you want by your side.  And she will

Anyway, in the wake of the antisemitic massacre at the synagogue in Pittsburgh, I find her blog post to be more relevant than ever.  I don’t quite understand how I never saw it until now, but I am glad to have found it.  Like many good posts, it makes you think, and gives you more questions than answers.

Also I had no idea that she lost a partner to drowning.  I know this must have happened a long time ago, but my heart goes out to her.  I can’t imagine.

Another blog post by the same author, worth reading:

What Death Positive is NOT

For the first few years I was an advocate for reform in the death industry, I used phrases like “death awareness” and “death acceptance” to describe the movement I was a part of. After all, these were the terms used since the 1970s by scholars and practitioners.

I became “death positive” almost by accident. It started with a tweet, asking why we had movements like body positivity and sex positivity, but we couldn’t use that same umbrella to be forward thinking about our own deaths. People began to respond to the tweet, and the term took off. As an advocate, you go where the enthusiasm and momentum take you, and the term death positivity was challenging and necessary.

I would never tell you to self-identify as death positive. Even if you share all of our principles (laid out here), and support our advocacy, that may not mean you want to align with the movement. That’s fair! But I’ve noticed some misconceptions about the movement’s purpose and values lately, and I want to make sure our stance is clear.

Caitlin Doughty, “What Death Positive Is Not”, Order of the Good Death

This post is part of my Death & Mortality Series.  Please read my introduction to my Death & Mortality series if you can, to understand the context I write this in.  Thank you.

Posted in Developmental disability, Developmental disability service system, disability rights, HCBS, medical, Self-advocacy

Best hashtag ever: #GetYourBellyOut

#GetYourBellyOut is the best hashtag ever,

I’d better backtrack.

I had an ISA meeting.  That’s Individual Support Agreement.  At the last second, they brought a Surprise Administrator.  That is what I am calling the lady who showed up at the door to the meeting even though I’d been told that the only people present would be Laura (my DPA and soon to be adoptive mother) and my two case managers.  Surprise Administrator (SA for short) was someone who works in the Howard Center administration.  Surprise because they didn’t tell me she’d be at my ISA meeting until she was at m

The ISA is Vermont’s version of a person-centered plan.  It, of course, just like in other states, does not have to be either a plan or person-centered to qualify as a person-centered plan.  The meeting was certainly not very person-centered.  It degenerated into a shouting match mostly.  And a lot of it was the Surprise Administrator telling me that I was off-topic.  At my own ISA meeting.  When attempting to explain my ISA goals.  Which were “off-topic” because they didn’t like

So it was good that there was a moment of comic relief in all that because otherwise it was just a shitshow that went nowhere productive.

This moment of comic relief came at an unexpected time.

I had defined my first goal as survival.

I meant it.

I actually had specific, concrete actions I wanted taken in order to get to that goal, but the Surprise Administrator was busy telling us that this was impossible.

So at some point an exchange very close to the following took place between Laura and the Surprise Administrator:

Surprise Administrator: Survival isn’t a goal.
Laura: Yeah it is!
Surprise Administrator: It’s a vague goal.
Laura: What’s vague about it? If her heart keeps beating…
Surprise Administrator: Yeah but some people define survival differently than others, like some people define it as being hooked to all kinds of tubes and vents and stuff.
Me: (silently but firmly pull shirt up to show two feeding tubes and an ostomy bag)
Surprise Administrator: OH MY GOD I DON’T NEED TO SEE THAT PUT YOUR SHIRT BACK ON RIGHT NOW!

After the amount of sheer bullshit that went on in that meeting, I can’t even try to make myself feel bad about the amount of giddy, giggly, juvenile pleasure I got out of that incident.  Especially given how sleep-deprived I was at the time.

So later on I discovered the best Twitter hashtag ever: #GetYourBellyOut.

It’s the complete opposite of the Surprise Administrator’s hashtag, which I imagine would be #PutYourShirtOnMel.

The idea is people with ostomy bags are supposed to pull up our shirts, take selfies, and post the pics on Twitter under the hashtag #GetYourBellyOut.

It was started by a guy with a colostomy.  The point is to reduce shame and stigma around colostomies, ostomy bags, stomas in general, etc.  It’s mostly about colostomies but can apply to anyone with similar things.  My ostomy bag goes over a healing jejunostomy stoma after the tube was removed, and I’ll continue to need an ostomy bag to catch the bile until it heals.  Which could be months.

So this is the picture I posted to #GetYourBellyOut:                                               

#GetYourBellyOut

Which is basically, in the above picture, roughly the same sight the “PUT YOUR SHIRT BACK ON” comment was inspired by.

I’m just… highly amused there’s a hashtag for exactly what I did spontaneously out of frustration.

Anyway here’s a Get Your Belly Out website for Crohn’s and Ulcerative Colitis.  I don’t have either of those things, but I love their website picture, which is a bunch of bare bellies with stomas and ostomy bags! 

STOMA BELLIES!

I’m a huge fan of anything that makes people realize that bags, tubes, holes in weird places on the human body, and the like are a normal part of life for a lot of people. And not a cause for excessive bellyaching (oh come on, I had to say it) about having to see it…

Posted in culture, history, music

The Eagle Flies Alone, and what does Armageddon mean today?

Sorry I can’t write out the lyrics.  Kruschshev must’ve really made an impression on Tony Carey as a kid, he’s always referencing the shoe-pounding incident.  I don’t know if I’ve ever shared my collection of Cold War songs in its entirety or not, but this is one of them.  (The vast majority are by this artist, he did a lot of Cold War inspired work both under his name Tony Carey and his sci-fi/historical dystopian band name Planet P Project which was basically just him with a synth and a lot of time on his hands.)

I find it interesting to hear the perspectives of different people who were there, writing songs about the Cold War during or shortly after the Cold War.  I’m at the tail end of the Cold War generations (I’m about as young as you can get and still have understood what was going on enough to absorb the historical context despite some massive comprehension problems on my part) and this guy is from close to the other end so it kind of bookends things for me.

To me, the end of the world is nuclear war.

Like.  Those two things mean the same thing

It’s taken me time to realize there are other ends.

It’s taken me even longer to realize the end of the world is not the end of the world.

It’s taken me even longer to convince anyone that nuclear war never stopped being a threat.  I never understood why everyone was so fast to think we were safe when the Cold War ended.

Like.  No.  Really.  I knew those nukes didn’t just vanish.  I knew the technology didn’t just vanish.  I knew the nature of modern human cultures didn’t just just vanish.  I was a kid but I wasn’t that oblivious to the world.

I wonder what Armageddon today’s kids are inheriting.

Understand I didn’t first hear Armageddon in a religious context.  It was another word for nuclear war.  I had no idea it was a religious metaphor or what religion it came from.

So I wonder what Armageddon means to today’s kids.

Does it mean this?

They were beginning to tell us stories like the above when I was a kid, but it was harder to grasp or believe.  Especially since I associated environmentalism with upper-middle-class and rich snobs trying to one-up each other’s status symbols.  So I had an aversion to taking them seriously.

This last song, I take as a call to action, to say, “This will happen if we don’t do something now.

But a friend warned me that the tone of the song can also signal despair, and stop people from hoping, and stop people from believing they have any obligation to carry on even in the face of loss of hope.

And I can see that.

So I’d remind people that the fact that each of us individually will die does not absolve us of our responsibilities while we are still alive, it only underscores them.  Because there will always be those who come after us.

And I’d remind people that the same is true of us as a species.

It still matters what we do for each other right now, because each of us matters right now.

It still matters what we leave for the next generation, and how hard or easy we make something that will never be easy.

It still matters, even in the event of extinction, what we leave for other life that may come after us.

It still matters what we do now.  Because everything now matters.

It still matters what we do for the future.  Because the future is not just any one of us, and it is not just all of us, it is a whole world, a whole universe, it is things we can’t understand or anticipate, and what we do has an effect and matters to all of that.

It matters because we are all on Julian of Norwich’s hazelnut together — this one tiny fragile nut that we have to take care of because it’s all we’ve got.  And if you think she lived a long time ago in simpler times, a reminder she lived during the frigging Plague in Europe, which sure looked like the end of the world at the time.

And just as death was considered a marker of social equality back in those days, another song from my Cold War collection references nuclear war just before saying “Ashes and diamond, foe and friend, we were all equal in the end.”

Wow I’m cheery today.

A Slovenian Danse Macabre mural

I actually love the symbolism of the Danse Macabre, though.  For real.  It says that death is the one thing that happens to every one of us, that makes us all equal.  It’s an art form depicting dead people dancing together, from all walks of life.  The Plague got people thinking that way.  That’s bleak optimism for you.

Ashes and diamond Foe and friend We were all equal in the end Pink Floyd, “Two Suns in the Sunset”

As far as I knew, growing up, the world ended with a flash.  The only difference you got was whether you were at the center of the flash and died quickly, or a further distance away and died slowly.  On 9/11, I was sure from FBI chatter (and lack of communication device) that I was headed towards the center of the flash.  I was a lot of things, but I wasn’t afraid.  I’d been ready for it my whole life.  It only took minutes to adjust to the “okay it’s finally happened, no time to feel bad about it” mentality.

It took a lot longer to adjust to the reality of what’d actually happened.  But I was baffled by all the people saying “We’re not safe anymore.”  Safe?  Since when were we safe?  Did everyone forget so fast?  And honestly what happened for real was a lot less bad than what I imagined when I heard the snippets like “Plane headed for the Pentagon” and “We think downtown San Jose will be a target, we need to shut down San Jose” and people standing on street corners waving newspapers with “ATTACK ON AMERICA” in giant letters.

I mean — there was no context for planes flying into buildings, and anyone old enough to be reared on Cold War propaganda and unable to get access to the real news was gonna come to one conclusion.  My dad was coming out of an isolated part of the Sierra Nevadas and came to the same exact conclusion when the planes stopped flying over (he memorized plane routes and used them to help orient to both time and locations) and he could only get patriotic music on the radio.

And now we’re facing so many different ends.

And yet none of the ends are ends, if we look beyond ourselves, just as our own end isn’t the end, if we look beyond our own personal death.  And even what looks like the end of the species may be survivable for small tiny numbers of scattered people.  But end of person, end of most of our species, end of our entire species, end of many species, whatever it ends up being — we still have a responsibility right now.  To everyone who still exists, to everyone who will exist, to everyone within our species, to everyone beyond our species.  We have a responsibility.  That never goes away.

As for despair, this is worth keeping in mind:

It is not despair, for despair is only for those who see the end beyond all doubt. We do not. Gandalf the Grey, J.R.R. Tolkien, The Fellowship of the Ring

I know I’ve said all this before.  But some things are worth repeating.  And the memory of the Cold War seems worth keeping alive.  Different eras in history shape not just big forces in the world, but also the lives and beliefs and perspectives of small people everywhere.  And those lives and beliefs and perspectives and memories are, each one of them, vitally important.  They are what history is really made of — each one of us, not a single one invisible — and why history matters.

Posted in Developmental disability, disability rights, Self-advocacy

I’ll take the ‘dirty’ dick jokes rather than the ‘clean’ r-word jokes, thanks.

I watch a lot of standup.  I watch good standup, bad standup, everything in between.  I just watch standup whether I like it or not.

And I vastly, vastly prefer the comedy that allows for dick jokes and other things that aren’t considered ‘clean’.

Obligatory hot dogs…

Because it’s less likely to seriously offend me.

Because people with intellectual and developmental disabilities are acceptable targets of ‘clean’ comedy.  So when they get rid of all the dick jokes and all the stuff that’s socially unacceptable and ‘dirty’, they’re left with acceptable targets.

Which includes me.

And no, hating r-word jokes is not the same as censorship or not being able to laugh at myself.  I laugh at myself, and at disability, all the time, to the point it makes a lot of nondisabled people really uncomfortable.

The issue is that most r-word jokes are hate.

They’re not meant in good fun.

They say “You’re not a human being.”

It doesn’t matter if you cloak that message in humor, it’s never okay.

The primary targets of the r-word are people with intellectual disabilities.  But it has a broader range than that — it’s aimed in general at a group of people who are harder to define.  Anyone who can be easily mistaken for someone with an intellectual disability, certainly.  And anyone who’s been, in the imaginations of most people, sort of lumped together as this blob of people who aren’t really human beings.  That includes most people with developmental disabilities, some people with cognitive disabilities, and, as I said, it’s a group whose borders are fuzzy and indistinct.  But we’re all lumped together under the r-word in the imaginations of the people who use it.  It’s not a diagnosis, it’s a slur.

And I don’t use the word slur lightly.

To me, for a word to be a slur, it has to be a word that contains within it the notion that the people targeted by it are not really people or human at all.

It can’t just be an insult that’s often thrown at a particular group of people.  It has to be more than that.

The r-word is probably the slur I have absolutely the least tolerance for.

People have been calling me the r-word since I was a child.

My voice sometimes has ‘that tone’ in it that people associate with the r-word.  A sort of ‘dullness’.  People imitating my voice have always taken advantage of that.  And they imitate my posture and mannerisms as well.

By the way it’s very fucked up to have a common mannerism associated with people like you, be the actual American Sign Language word for the r-word.

But you don’t need to speak ASL to use our mannerisms and tone of voice against us.

And yes — people used the r-word on me even when I was technically classified as gifted.  In fact, they told me “Gifted is just what they call [r-words] to convince them they’re doing well in school when they’re really going to special classes.”  I’m not the only person I know with developmental disabilities who was told this growing up.

I was also told I looked like a [r-word] as a way to get me to behave more normally.  It didn’t work.  I never had any idea what they were talking about.  (I also got called “blind” and “psychotic” in similar circumstances.  There was always a tone of complete disgust, like I was a dog who’d just shat on the table at a fancy dinner party or something.)

At any rate, r-word jokes aren’t funny.  At least, not the ones I’m talking about.

And the fact that they’re considered perfectly acceptable for ‘clean’ comedy to the point they seem more common there than in the ‘dirty jokes’ kind, says a lot too much about the society we live in.

R-word jokes are an expression of hate, not an expression of humor.  It’s not just the word, it’s the way it’s used.  It’s the acceptance that those of us targeted are not human beings.  It’s the knowledge that every time someone accepts this kind of hate into their mind, people like me are at more risk of bullying, abuse, hate crimes.  And that most people don’t even register it as hate.  Even though it’s some of the most horrible and dangerous hate I’ve ever seen.

Sacha Baron-Cohen says, “I am exposing.  I am airing prejudice.”  The only problem is that the people [who] are laughing, are not laughing at the prejudice.  They’re applauding the prejudice!  When the joke is “Throw the Jews down the well, kill the Jews” it’s not funny.  But even if it was funny, they’re applauding it.  

Abraham Foxman, “The Last Laugh”

I agree with a lot of the people on “The Last Laugh”.  It’s a documentary about where the line is between acceptable and unacceptable topics for humor.  I don’t think there’s unacceptable topics for humor, but I do think there’s more and less acceptable ways to handle them.  And a lot of it depends on who is saying the joke, how they are saying it, and what they are saying. 

And when I talk about r-word jokes, I’m talking about people without any of the disabilities covered by the r-word making jokes at our expense.  Telling a joke that has real-world consequences and hiding behind “It’s just a joke” is both cowardly and dishonest.  And I feel like there’s a tradition among comedians to hide an immature impulse to do whatever you’re told not to do, behind some kind of pretense of moral nobility.

Give me a good dick joke any day.  Seriously.  Sex can be funny.  Hate isn’t.  At least, expressing hate is not funny.  Tell some good jokes about asshole comedians who think hating people with I/DD is ‘clean’, though, and I might laugh.