I hide what I don’t know when the blankness is huge.

A lot more of the time than I let anyone realize, most of the world is blank.  Most of what happened is blank.  Most of what is supposed to be background knowledge is blank.  Most of the past is blank. Lots of the present is blank.  Lots of things are blank.

And to let anyone know is terrifying.  Because I don’t want people to ever realize how much I sometimes don’t know at a given time.  I’m afraid of what would happen to me if people knew.

The world starts fresh over and over for me, fresh from a moment.  I start not knowing where I came from or what is happening and I wing it.  Over and over.  I am good at just acting in the moment and not letting on that I feel I just appeared in that moment.

Eventually, eventually it all filters down into awareness, memory, and I can write about it:   I just appeared where I am.  I don’t know how I got here.  I don’t know what led up to here.  Everywhere I look is blankness.  This is a common thing.

And I may not pass as not cognitively disabled but I sure as hell try to gloss over the extent.  And since people don’t expect such level of blankness it works in some circumstances.  I haven’t even managed to convey the half of it.  But I probably never will.  I’ve tried.  Hence this.

So what do I do?

Hold onto a familiar rock and hope that things beyond the rock will be familiar again one day and the world will expand again and not everything will be blank.

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When I can remember the rock.

My cat has scattered my dad’s memorial shrine again.

There’s very little he’ll leave alone, if given the chance.

My father's memorial shrine, with the picture knocked off-kilter, only one rock out of dozens, and a few of his childhood belongings including a small denim treasure bag and a couple wooden toy swords. The slide rule is not visible, and the other slide rule is missing. Lots of things are missing or moved from where they should be.

My father’s memorial shrine, with the picture knocked off-kilter, only one rock out of dozens, and a few of his childhood belongings including a small denim treasure bag and a couple wooden toy swords. The slide rule is not visible, and the other slide rule is missing. Lots of things are missing or moved from where they should be.

But the more I think about it… I like having a memorial shrine, I will put it back together again, but the cat will knock it over again unless I buy some museum putty or something, which I’m not sure I’m willing to do.

And the more I think about it, the more fitting it is that my dad’s things are sometimes all over the house, reminding me of him in everyday life.

I sleep with his rocks in my bed.

I wear his clothing.

I find things he owned everywhere.

I use his tools.

I’ve said before that objects are my best form of communication.  With my father, this is true.  All of his things don’t just each remind me of him. Each one had a specific relation to him.

Taken together, they point back to who he was with the precision of a laser beam.

And they will do that whether they are properly arranged on the shrine or scattered everywhere by the cat.

And I love remembering my father.  I love finding him in my current life, in who I have become.  I love relating to him in an ongoing way even though he is dead.  Because who he was can’t be erased and his influence on the world still exists and will always exist.

I don’t idealize him the way some people do when someone dies, though.  I remember the worst parts about him.  But I don’t feel like I’d be remembering him if I did otherwise.  It would feel like an insult to his memory to turn him into an image of something he never was.

But I also don’t feel the horrible feelings most people expect with grief, for the most part.  I feel like he is still in my life, just not present.  His things remind me of who he was, and his influences and actions ensure he’s still around in everything I do.  I still have an ongoing relationship with him.  Most of the time I remember him with joy.

Bottom line is, I love my father.  And maybe sometimes overzealous kittens make you put things in perspective.  Remembering my father is not confined to one part of the house, it is integrated into my life.  Memorial shrines are a good thing, don’t get me wrong, but having them disrupted can make you think.

 

An eighties child’s conception of AIDS.

AIDS is something that slowly absorbed into my awareness, despite a lot more barriers to comprehension than the average child would be dealing with.  This is my best rendition of my child’s understanding, looked back on with adult eyes.

I was a child when I first heard the word AIDS, and like most words at the time, I didn’t understand it but it recorded itself in my memory.  Well — not AIDS as a single word, but rather the full phrase AIDS antibody test, which ran together in my head because news reporters repeated with a tone to their voice that meant it was important.  I stored it as important with no comprehension of any of the three words.

Later, it became important in another way.  I was learning to use words with minimal understanding.  I had worked out a rule I could use — if a word seemed to be used in many different contexts and have vastly different effects, I would not use the word.  Aides were people who existed in the classroom, aids were something else entirely, and AIDS was a word you heard all over the place.  I didn’t know they were different words, or how they were spelled.  I didn’t do this with all sound-alike words, but only ones that fit certain patterns I still can’t articulate.  I just knew better than to say any of them.  So for many years, I never said aides, aids, or AIDS.

On the playground, children ran around tagging each other.  As they touched each other, they’d say “Tag, you’ve got AIDS.  Tag, you’ve got AIDS!”  It wasn’t like regular tag.  Each child would run around touching other children one by one on the arm, saying “You’ve got AIDS,” and then some of those children would run around doing the same thing.  They weren’t playing tag, they were playing a plague game.

As I got a little older, I learned a little more about what AIDS actually was.  My mom’s friend Matt (not his real name) from work got AIDS.  In the process, he was outed as gay at work.  This was a hospital, everyone involved were healthcare workers, and he had tons of friends there.  By the time the dust settled, my mother was his only work friend.

I didn’t spend much time with him, but we did go with my mom up to Filoli Gardens once.  It’s the only time I’ve ever been there, and I will always associate it with Matt.

Filoli gardens, a large garden on the grounds of a mansion on the edge of the Santa Cruz mountains in San Mateo County.

Filoli gardens, a large garden on the grounds of a mansion on the edge of the Santa Cruz mountains in San Mateo County.  It’s the last place I went with Matt before he died.

I was a child and I picked up child things from this.  I didn’t know what gay meant — it was another word I would not use because of multiple meanings that fit a certain pattern.  I saw that he looked sicker and thinner every time I saw him, and one day my mom said he was dead.

I remember Ryan White, a boy with hemophilia, contracting AIDS from a blood transfusion, and hearing on the news how he was shunned by his entire school.  I remember him dying in 1990.

I was a little more able to understand things by the time Guy Nakatani started speaking at schools, including two schools I attended.  I still didn’t understand the moral weight people gave to AIDS or being gay.  Guy Nakatani had AIDS and talked about its effects on the body, and the effects of the treatments back then on the body, and that much I could grasp.  I remember him saying that he would talk about anything about AIDS except how he got it.  He said that people divided people with AIDS into innocent victims and deserving victims, and that he didn’t want to say anything that could put him on either side of the divide.  I didn’t understand the reference.  I’m pretty sure the other kids did.

I remember the second or third time I saw him at a school.  He was so thin he couldn’t sit down.  I had read in the paper that he doesn’t disclose how he got AIDS, and his reasons.  The paper had then gone on to say he’d gotten it from gay sex.  I understood enough to know this was horribly cruel and unfair.

I was in high school now.  I had some idea what gay meant.  I did not understand my own sexuality yet, but it gave me great amusement to learn that the only person friendly to me in that school was also gay and in the closet.  Everyone thought we should be dating, or were dating.  Nope.  I’d come out as bisexual in a year or two as one of the first steps in my coming-out process, which I know makes me a tired stereotype but it’s what happened.  I’d be 19 before I could say the word lesbian about myself, and that was a long way off.  And even longer before I could articulate anything even vaguely coherent about gender.

There was one openly gay boy in my high school.  I heard everyone talk about him when they thought I wasn’t listening.  They said that he only was out for attention.  They said he read gay magazines in the student lounge for attention.  He transferred to another school across the country.  Then he ‘burned out’ and had to come home.  I later wondered how much homophobic bullying had to do with that.

Likewise, there was one openly gay guy in a student organization I’d drifted into.  (I drifted into a lot of things at that age without a lot of intent or agency involved.  I understood a lot more, but was hiding at least some of my continuing incomprehension without actually trying. It’s just how I operated.  And I ended up doing everything from joining organizations to choosing majors in this manner.)  It was kind of like a debate club.

I remember there was a debate about gay marriage.  And he said he wanted to meet a beautiful man and then marry him.  That line from his speech, and the emotion he said it with, was the only one I understood.  But I understood it.  I heard people gossip about him, too.  They said he wouldn’t be such a big deal in the organization if he didn’t use being gay to get attention.  Like when I was younger, I didn’t evaluate those statements for meaning for many years.  But I remembered them, and I still remember them.  For what it’s worth, as is obvious, I couldn’t disagree more.

So Guy Nakatani came to our high school, just as he’d come to my middle school.  It was just after that horrible newspaper story had been published.   He looked exhausted, weak, and sick but he wanted to continue educating people about AIDS for as long as humanly possible.  He tried to do so.

I don’t remember most of the questions, but I remember one  One student raised his hand and said, “How did your parents react to finding out you were gay?”

Guy Nakatani was silent.  The whole room was silence.  There was just an eternity of awkward, stony, defiant silence.

And then things moved on.

I later read in the paper that Guy Nakatani had died.

And apparently, however they reacted at first, his parents came to see it as their mission to promote loving acceptance of having gay children.  But I could feel the burning horrible invasiveness and unfairness of the question when it was asked.  And I could feel his equal shock and defiance in response.  He seemed to be trying not to cry.

In health class at school, when they covered the topic at all, they tried to tell us everyone could get AIDS and everyone needed to use comdoms.  One day, they had a gay couple come in.  One of them had AIDS, one didn’t.  They were sexually active, with protection.  Later I heard both kids and adults condemning them.

That same year I saw Guy Nakatani the last time, and after I’d crashed and burned and had to drop out of high school, my mom told me that her friend’s daughter had just died of AIDS.  She wanted to get rid of all her clothes, and wanted to give them to me.

I thought at first that her mom had just given me all of her clothes.  As in, all her clothes from her entire life.  Because there were clothes that seemed like they were for children.  Young children.

My mom explained to me that the clothes that were too small for me were because she’d gotten so emaciated towards the end of her life that she had to wear children’s sizes.  I never forgot that.  And I always remembered her when I wore her clothing, even though I didn’t know her and never met either her or her mother.

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Mel at 15 or 16 in a residential facility playing with a dog and wearing the dress of a girl who died from AIDS.

Objects tell stories of their own, and they talk to me better than words do, so I have never forgotten her.  I wore her clothes and I wore her shoes, and I still wear a pair of shoes in the exact make and style of the ones her mother gave me.

I only dimly registered the major AIDS battles that were heating up the country and the world throughout my childhood.  I didn’t know about ACT-UP, although I’m sure I heard of their activities in the background and didn’t connect them (I did a lot of that).  I didn’t have the opportunity to look for information or ask questions, I didn’t drift in that direction.  But as I drifted through life — which is what I did back then — I drifted near enough for AIDS to penetrate my awareness for as long as I can remember picking up on words at all.  And it’s weird the things you remember…

Remember that history is made out of each of us all put together, ordinary people, and what we remember of it is important.  I may not have understood everything being said and done around me, but I absorbed it all.  This may be a bit of a dismal post for Pride Month, but this is what I grew up with.  This is part of our community’s history.  And it’s important to remember it all.

Everyone has a right to decide what’s private to them.

Mel with hands hiding face.

Mel with hands hiding face.

Everyone deserves privacy.

Everyone deserves to decide what we will discuss about ourselves, and who we will discuss it with, and when, and where, and how.

Everyone deserves to decide what we define as private in a certain situation.

You don’t give up your right to privacy because you have discussed something before.  You have no obligation to discuss it again.

You don’t give up your right to privacy because you have disclosed something most people consider highly private and personal information.

You don’t give up your right to privacy because you consider something highly private and personal that most people would not.

Example:

I find it relatively easy to discuss the fact that I have been molested, a thing that most people consider highly private and personal.

I find it harder to discuss other abuse that most people would consider less serious and also less personal.

Because sexual matters are generally considered more personal, and non-sexual abuse is usually considered both less personal and less severe than sexual abuse.

But this is not how I experience these things, and I have every right to choose which one of these I discuss.  And where I discuss it.  And with who.  And how.

I have a right to discuss information about myself that most people would consider private and personal.

I have a right not to discuss information about myself that most people would not consider private and personal.

I have a right to choose when, where, and how I will discuss any of these things.

I have a right to change my mind on things like this.

And so do you.

Why am I writing this?

Lots of reasons.

But one is that there’s a culture online of making you disclose certain information about yourself, or expecting that you disclose it.  Not even as a matter of discussion, just as a matter of course.  You’re supposed to put it right up on the front of your blog, in some circles.  And it’s a problem.

There’s a thing where you’re supposed to list in which ways you are marginalized and in which ways you are privileged.  I’m not going to get into the assumptions made here about a shared vision of reality in which you can sum such things up in a word or two.  But even disclosing this information can be private for some people.  Failing to disclose this information, and having to explain why, can be private for some people.  Discussing why they do or don’t agree with the entire system of seeing things can be private for some people.  Discussing the complexities of the person’s actual position with regards to some kind of oppression can be private for some people.  All of these things and more can be private, and the expectation itself can create invasions of privacy, as well as a sense of obligation to disclose private information.

Asking people’s preferred pronouns can be an invasion of privacy.

Demanding that everyone present tell their preferred pronouns can be such an extreme invasion of privacy that some people will never show up or will go away.

Discussing gender can become an invasion of privacy when people are expected to disclose anything from our actual relationshp to gender, to our relationship with our bodies.  Some people don’t want to be open about such things.  Some people know it will endanger us to be open about such things.

And sometimes what we want to discuss requires the disclosure of private information in order to discuss it in a way people will understand.  And sometimes we decide to do so, and sometimes we don’t decide to do so.  Sometimes other people’s expectations play into this.  Sometimes they don’t.  This can prevent us discussing certain topics altogether, or prevent us discussing them in a way that really shows what we think.

At any rate, you have every right to decide what is private information for you right now, and not to discuss or disclose it except when you want to.  You have a right to decide whether you will discuss it.  You have a right to decide in what manner you’ll discuss it.  you have a right to decide when you’ll discuss it.  You have a right to decide who you’ll discuss it with.  You have a right to decide how you’ll discuss it and what you’ll discuss.  All of these things are part of your right to privacy.  And you’re allowed to exercise that right.

Forest fraise (long shawl) crochet project

Photo on 6-13-18 at 7.52 AM #2I’ve been making a lot of other crochet projects lately, and I discovered Elegant Yarns Kaleidoscope wool yarn when I made a shawl for a friend.  They make self-striping wool yarn in really nice colors.  So I slowly got some of their forest-colored yarn and started making this Modern Fraise pattern by Tricia Jones (that’s a Ravelry link, so you may need an account to see it).

It comes in four versions — cowl, short shawl, long shawl, and cloak.

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Sample page from the pattern.  It shows examples of the cowl, short shawl, long shawl, and cloak versions of this pattern.  Ornate text reads:  “Modern Fraise:  Cowl, Shawl, or Cloak.  Modern Fraise is a custom collared garment that is crocheted to your choice of four different lengths.  It can be made short as a cowl or long as a full cloak.  It is constructed using simple repeats of stitches and stitch lengths row by row to create a complex looking garment that is actually quite simple to construct.”

I went for long shawl.  I wanted to make something for myself that I could wear in the cold Vermont winter and actually get some heat from it.  And also that I could wear at times like now, when some of my health conditions make me feel more chilled than I ought to.

It’s finished according to the pattern, but I’m not actually done with it yet.  The original pattern has a way you can put ribbons in some of the openings.  Instead of ribbons, I plan to continue on the forest theme and crochet plant roots or something, and thread them through the same holes like ribbons.  Haven’t got there yet, but planning it.  Given some problems with getting enough steroids through my J-tube (the stoma leaks, I’m gonna have to get the entire stoma re-dug somewhere else), I’ve been freezing in the middle of summer,  So I’m wearing this thing right now, as I work on the final pieces.

Mel wearing shawl, mostly view of top.

Mel wearing shawl, mostly view of collar and top.

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Full shawl with hands in front.

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Full shawl in its basic shape.

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Full shawl open at front.

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Full shawl with arms pulled in.

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The way it drapes down the side, from high back to low front.

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The back is higher than the front.

Closeup of collar.

Closeup of collar.

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Closeup of front.

Holding up an arm, can see bottom border trim.

Holding up an arm, can see bottom border trim.

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Closeup of front, while holding hands up.

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Bottom border trim.

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Mel wearing shawl with arms out.

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Mel wearing shawl with arms in.

It’s pretty hard to describe the exact style of this thing, but it has a high vertical striped collar that buttons with wooden buttons, and then uneven horizontal stripes going all the way down.  The colors are various shades of dark and light green, brown and tan, and assorted shadowy greyish-blues.  It really does resemble a mottled forest sort of colors.

I am not disappointed with the comfort at all.  This is soft wool that’s very warm and very suited to my needs right now.  I also used some basic brown wool yarn for the trimmings.

The difficulty of the pattern was… weird.  The actual stitching was not difficult.  But trying to work out what was meant by the stitches mentioned, was.  I did not completely follow the pattern, I deliberately made it larger to accommmodate my size, and also had some accidents with understanding the pattern that I was able to work around without any problems.  The real challenge was just figuring out what was meant by some parts of the pattern, and especially at the beginning I had to rip a lot of things out before I figured out what the intent was.

Overall I’m thrilled with the result and eager to put on the finishing touches of decorations, even though I haven’t decided quite what they’ll look like yet.

The other kind of memory.

A mishmash of tree branches, roots, and forest floor, with a very fuzzy image of a child in the background.

A mishmash of tree branches, roots, and forest floor, with a very fuzzy image of a child in the background.

Memory is important.

But your own personal memory is not necessary.

The best of human memory is fallible, changing, and fickle.  And memory can fail.  In so many ways they can’t be counted.

It can be frightening when memory disappears.  In all the ways it can disappear.  Temporarily.  Permanently.

Memory is not what defines us.

We are still here even when we can’t remember.

And the world remembers for us.

Everything we are, everything we have done, everything we have been part of, everything we have affected.  Those things are still there in the world.

Our mind may fade or distort or completely eliminate the events but the events, and we in them, are still there, embedded in the world.

Memory is useful, important, valuable.  But our memory is not the only memory.  There’s a deeper memory, a longer memory, a memory that doesn’t require anything of us.

And in that memory, nothing is forgotten, and nothing and nobody is invisible.

Are my regrets weird or is this graph wrong?

This morning I watched a TED talk called Don’t Regret Regret.  Now I wonder if my big regrets are somehow weird.

This is a graph they used to talk about what people most regret in their lives.

What we regret graph in order of most to least by percent:  Education (32), Career (22), Romance (15), Parenting (10), Self  (5.47), leisure (2.55), Finance (2.52), Family (2.25), Health (1.47), Friends (1.44), Spirituality (1.33), Community (0.95)

What we regret graph in order of most to least by percent:  Education (32), Career (22), Romance (15), Parenting (10), Self  (5.47), leisure (2.55), Finance (2.52), Family (2.25), Health (1.47), Friends (1.44), Spirituality (1.33), Community (0.95)

Most of my regrets are failures of love, failures of ethics, ways in which I have wronged people, and I don’t really see  those listed although some of them could fall under self, family, friends, spirituality, and community, if you stretched them.

I do wish I’d never set foot in a school, but if you asked me to list my biggest regrets that wouldn’t even come up in my head, so i’m surprised education and career are so high.

Possibly the thing I’ve done concretely in the world that I most regret is something I may never be able to discuss in public.  And that’s okay — privacy is a thing.  Just because I talk about a lot of things other people see as private, doesn’t mean I don’t have a right to determine what I am private about.  But I can say that I did what I think was a profound betrayal of another human being in the way I used power over them.  It wouldn’t have looked like much — or like anything bad — to most observers, but most observers wouldn’t have known shit about what they were looking at.  It was bad, I am sure it hurt the person, and I have a hard time forgiving myself for it.

I also regret a lot of things I took part in that I am told that because of my age at the time I really wasn’t 100% responsible for them, especially given what I was led to believe by my family.  (Sorry for being overly crytpic here.)  But it makes me wonder at what point a person becomes responsible.  Which I suspect depends on the situation and the person, rather than being something set in stone that just happens.

At any rate, I have tiny regrets that fit parts of this graph, but my big regrets really aren’t on or near the top of the chart here.  Or on the chart at all.  The little regrets are ones that might come to mind time to time, but are easily banished and forgotten.  And that would certainly not pop into my head if you asked me to name 12 or even 24 things I regretted.

I wonder if I’m weird or if the way they came up with this graph somehow doesn’t represent how most people would see their regrets.

Every part of your life makes your perspective vital to the world.

We all come to the world from a particular place. Each of us it’s a little different. Sometimes a lot different. Some of it is culture. Some of it is background and life experiences. Some of it is our families. Some of it is the way our body works. Some of it is location. There are so many things that influence our perspective on the world.

But we all have one particular perspective. And that perspective is important. Without many perspectives on the world, the world would be in a lot of trouble. We need people from different backgrounds, different thought patterns, lots of different things.

But every part of your perspective, everything that makes it up, is important. And that includes the things that seem to contradict each other. And all the things you’re ashamed of. Or afraid of. Or all the little details that seem to make things a little more complicated. Those things are all important to who you are, where you come from in the world, and what makes your perspective important.

I’ve talked before about being an Okie. I may have even talked about how ashamed I was and afraid I was for a long time of recognizing I was an Okie. There were a lot of reasons for this. But I could not understand myself, or my culture, or the things that made me different from my neighbors where I grew up.  Not without understanding both that I was an Okie and what an Okie is. And the history behind Okies in California.

Mel wearing an orange t-shirt that says "California Okie" with a picture of a redwood tree and a map of Oklahoma.

Mel wearing an orange t-shirt that says “California Okie” with a picture of a redwood tree and a map of Oklahoma.

But it goes beyond just being an Okie. There are tons of specifics to it. There is how long most of my family was in Oklahoma and the surrounding area before coming to California. There is why each specific part of my family came to California. There is when they came to California. There is what opportunities were open to them and not open to them compared to other Okies. There is what states they came from both originally and before they came to California. There is who stayed behind, who came to California, and who went back. And why. There is the specific ethnicities of different parts of my family.

There is also the fact that we left that San Joaquin Valley and ended up in Silicon Valley. There is the fact that my father was a very specific kind of person who existed in Silicon Valley, even though their presence was rarely acknowledged. Which is he was an Okie techie. There were Okies who left what were usually farm jobs and made it into some part of the Silicon Valley tech industry.

In my father’s case, that meant he was an electronics technician. He, like many Okie techies, came from a small farming or farm working background. He grew up tinkering with electronics in the attic of his farm. His high school in Kern County had an excellent program. Every year, they built a house. The carpentry class would build it. And the electronics class, which my father was in, would wire it. And so on. They would sell it as cheap as they could to a family who needed a home, and use the money for next year’s house. My father got practical experience with electronics while still in high school.

He went to a two-year college and got a degree that allowed him to be an electronics technician. But like many Okie techies, most of what he learned in the world came from practical experience of some kind.  His on-the-job experience gave him enough knowledge that he could do the work of an engineer without the schooling.  He even trained engineering grad students.

This all meant that I was born in San Mateo County in the redwoods. Because this was very close to the physics research facility where my dad had a job when I was born. And it meant when we left the redwoods I grew up in Silicon Valley, mostly San Jose. I have also lived in the San Joaquin Valley, Santa Cruz County, Santa Barbara County, and other places. But that’s the basic area I was in.

And that means that while my culture was Okie, this was not the culture I was surrounded by. And I was exposed to a lot of things that most Okies would not believe in. Like all the stuff I call California dreaming. A large, destructive part of California’s culture where a lot of people try to live in a dream world. It’s most famous I guess as a Hollywood thing. Because it’s easy to see that Hollywood is based on a lot of people’s dreams about the world. But it’s around a lot of mainstream Californian culture. There’s a whole branch of the Silicon Valley tech industry where people  live with their head in the clouds and don’t seem to have any idea that there is a basic physical world they have to live in. There are also the new agers who think you can wish physical reality into existence using only your mind.

And so I was exposed to all these ideas, even though within my family they got very short shrift. Because like anyone who’s done farm work pretty much knows that you depend on the physical world and you cannot wish it away. And any Okie with any sense remembers the dustbowl and how you could not wish or dream that mess away, and how people created that mess by ignoring the realities of their physical environment. So my cultural influences push me very far away from the sort of thinking that gives us dream worlds, and thinking the Singularity will save us or kill us or whatever, and things like The Secret and the Law Of Attraction. Which are a lot more connected within Californian culture than you would expect.

But exposure to those ideas while young led me to try them out. And I tried them out in a pretty spectacular way. And I never could shake a pretty iron sense of the real physical world, even though I did my best to pretend. And part of that is my cultural background kicking in. But I heard if you pretend something it’ll happen, so I tried my best to pretend reality didn’t exist. But I couldn’t pretend to myself at all. So these were these two influences fighting in my head. What I heard around me and what I kinda knew in my bones.

My exposure to those conflicting cultural values shapes my understanding of the world. If I had only been exposed to one or the other, or if I had come from a different direction, my perspective would be extremely different. And I do think my perspective on this gives me insight into things that are important.

There’s also the specifics of my family, like my personal specific family history. Three of my grandparents were Okies, the other was the daughter of Swedish immigrants. My mom’s family tended to be FDR Democrats, my father’s family were Republicans. Both of my parents had political and religious disagreements with their parents. There were frictions in the family over politics and religion. There is the combination of political liberalism or leftism and a sort of cultural conservatism or traditionalism that’s pretty hard to nail down in words, but that definitely exists in my family and in me. There’s a lot more diversity among Okies in this regard than you will ever hear. And these things factor into everything as well.

But all that, all those influences, all those oddly specific things about my personal, family, and cultural background. Those all and far more things that I could not get into, contribute to what my particular perspective is and what I have to offer based on that perspective. Even my weird little personal aversions to being an Okie, my attempts to hide from being an Okie, my attempts to become something I’m not, my final understanding that regardless of anything I am an Okie. All those things, all those twists and turns, are important to who I am.

It is all of these extremely specific things that are specific to each person that are very important in so many ways. And culture is just one part of what I am describing.

Like you can go into anything. And all the specifics matter.

Another example:  I have a severe kind of inertia. So severe that in the medical world it’s been diagnosed as a form of catatonia since I was a teenager. First just as a description and later as an actual diagnosis. Severe enough that sometimes I need help with physical movement through physical prompting. But also not always that severe, fluctuating a lot throughout my lifetime. And fluctuating a lot based on a lot of things. And something that started out not as severe and became more severe over time.

That means that I intuitively understand a lot of the mechanics of how prompting works and does not work. I intuitively understand the vulnerabilities created by inertia.  These vulnerabilities are not well-understood by most professionals or family. I understand how things can go right, and how things can go wrong. This is true of many of us who have this kind of inertia.

Some people have never consistently done a voluntary unprompted movement.  Unlike them, I have had a degree of privacy to develop certain abilities. When I was a certain age, I was able to go on the computer, in a room by myself, and dial in to BBSs.

A BBS, or Bulletin Board System, was a computer system or network that you dialed into using a modem. At its simplest, it would have message boards where people can leave messages for each other. Kind of like if you’ve ever used a web board for some topic or another. It could also have email, whether within the BBS or with an Internet feed. Sometimes it would have Usenet which was again kind of like a web board in its way. Sometimes it would have what we now call chat rooms. Sometimes it would just have the ability to chat with the sysop, or systems operator, who is the owner of the BBS. Sometimes it would even have Internet relay chat. But not all BBSs connected to the Internet. Many were one computer.  Some had their own small networks like NirvanaNet. Which I used a lot.

But my time on BBSs was a time when I could type anything into a computer screen, and watch whatever reaction I got back. At that age, anything I said or typed had a lot of echo to it. So it was not necessarily reflective of what I was thinking. Sometimes it was. But that was not consistent for me. It was formative to privately and anonymously type words into a screen and get words back. Even if the fruits of that experience were in no way immediately obvious.  My communication skills would never have been the same without that.

And there are people who have a lot of inertia. Who have the same awareness I have of how it works and does not work. But who because of either their life circumstances, or their degree and type of inertia, have never had that formative experience of typing with nobody seeing what you’re typing. Or speaking without anyone hearing what you are speaking. And as minor as that might sound to someone who doesn’t know what that means, it fundamentally and hugely affects many things about how you communicate and even what you can communicate.

It also affects what you can safely communicate about. Because if you are dependent completely on other people for your communication, there are things that have consequences if you say them. And some of those consequences may be having your communication taken away forever.

But even aside from the risks, the lack of the experience of ever having communication privacy has an enormous effect on a huge amount of things. For me, having the ability to at least some of the time, and for me it’s most of the time, communicate or even just use words in private means there’s a lot of things I am able to say. Including a lot of things about the mechanics of inertia. And the mechanics of prompting. And the inherent dangers of prompting that cannot ever be erased.

And talking about those dangers is hard for people who depend on physical prompting to communicate. Some people do it, some people try. But they can’t always manage it. And when they do manage it, they may face very severe consequences.

So there are these dangers built deeply into any way of helping someone overcome inertia. And I can’t get into all of what they are right now. I’m not always actually that good at describing the exact nature of them. But I am able to say they are there. I am able to say that they can’t go away.

I am able to say that they are different from, vastly different from, the dangers that most people are aware of. I am able to say they operate in ways that have absolutely nothing to do with the fucking ideomotor effect. That human beings are not Ouija boards. That the fact that this takes place does not mean communication does not take place. But also the people who create, develop, and promote the many different forms of assisted typing do not understand this either. I don’t think some of them want to understand it. But others they just can’t understand if they’re not aware of what the actual problems are. And of course because of the stakes, there’s a lot of pressure to not even acknowledge there is a problem. Or to oversimplify the problem.

And the problem is someone like me is in a position to know and understand the dangers very well, and to be able to say hey there are dangers here. And that is so specific to my position in the world. Like my exact experiences with inertia. My exact experiences with prompting and assisted typing. My exact fluctuations in abilities. My exact background in this entire area, my entire personal history, the ability I had to experiment with language in private for years without anyone knowing who I was and what I was saying and why I was saying it.

And I’m also in a position to understand that even saying there are dangers carries dangers for those who rely on assisted typing of one kind or another. I know that anything I say can be used as ammunition to try and shut down attempts to allow people to communicate. And I take that very seriously, so if that’s your position on this is that all assisted typing is nonsense, I can tell you that is wrong. And I know exactly why it is wrong. Because I have used it.

So I exist in this borderland that is an extremely useful borderland to exist in. And all the twists and turns, all the little details, give me a perspective that is important to the world. I know other people with this particular perspective. Just as I know other people of my basic cultural and family background, both general and weirdly specific.

I’m not saying that I’m uniquely important in my perspective. We all have, each one of us, because of all the specifics of everything about us, an important perspective. We need every perspective we have. Even, or maybe especially, where our perspectives contradict each other or disagree. It doesn’t mean every single one of us is right. But every single one of us has something important to give to the world in terms of how we see the world and how we react to it. And when we try to hard to force everyone into the same perspective, we lose that.

Even weird things matter. Like being seen as high IQ and being seen as low IQ, both officially. Having gone from an early entry college to special education high school in that order. All of these things create understandings of the world that each of us has. Each of us has weird little specifics in our life that all matter.

Often it’s the things we don’t want to know about ourselves, or don’t want to think about, that are important. It’s the things we’re ashamed of. It’s the things people give us crap for. It’s the things we’re afraid of. It’s the things that aren’t even true, but other people’s belief in them has changed our lives.

Painful as some of these things are to think about, the more we understand them, the more we accept that all these things are a part of us, the better equipped we are to understand where we’re coming from. The more you understand the perspective you’re coming from, the more you can contribute from that perspective. It lets you know your exact place in the world and that is a very powerful thing to know. It gives you choices. It gives you understanding. It gives you insights that you would not otherwise have. It gives you more of an in-depth comprehension of both the strengths and limitations of your particular point of view.  It makes you understand your place within human diversity, and the importance of that diversity in all its forms.  It makes you understand why and how it is that diversity can never be neatly summed up.  It lets you know how you can use all of this.

So I’ve used a lot of examples of my own life here. But that’s to illustrate something that applies to every single person on this planet. Our culture matters. Our background matters. Our family matters. Our life experiences matter. Our physical body’s makeup matters. Everything about us contributes to this. And the less we can hide from the parts of ourselves that we don’t want to see, and the things about this that are so painful we don’t want to look at them, the more powerful we can be. And the more powerful our perspectives and our use of those perspectives can be.

So I guess the short version of this is:  Know thyself. But know thyself in detail. Know thyself fearlessly or at least courageously. Know all parts of thyself. Know the parts of thyself you would rather not know. Know the parts of thyself that you are proud of, that you’re ashamed of, that you’re indifferent to, that you are afraid of, all of them. Know how they all fit together. Know the parts of thyself that seem like contradictions and like they throw everything else about you into question. If something scares or repulses you, look twice, and look harder, and overcome the fear enough to see whatever is really there. I guarantee it’s important.

This is not navel gazing. This is how to understand where you fit in the world, where your perspectives come from, what contributions this makes you capable of or even obligated to, and what you can do about it. And it will go on your whole life. But the more you understand, the more power you have to do something good in the world.

Beware of medical fatalism.

I’ve experienced this for a long time, but several years ago I met a doctor who really brought into focus what the problem was.  It’s one way ableism can turn deadly, but you can’t always catch it because it sounds almost like normal medical advice.

I had a GJ-tube at the time.  This is a tube that goes into one hole into your stomach, but contains two sections, one of which ends in your stomach, one of which ends in your intestines.  This means that part of it winds through the inside of your stomach into your intestines.  But the stoma (hole) itself is just a single gastrostomy hole.

A labeled diagram of a common type of GJ-tube (gastrojejunal or gastrojejunostomy tube). Which is a type of feeding tube that goes in only one hole in the body but connects to both the stomach and intestines separately.

A labeled diagram of a common type of GJ-tube (gastrojejunal or gastrojejunostomy tube). Which is a type of feeding tube that goes in only one hole in the body but connects to both the stomach and intestines separately.

Anyway, I had two separate and unrelated problems.

One, the part of my tube that went into my intestines was rubbing on an ulcer right over a blood vessel, so a lot of blood was coming out of the tube.

Two, a giant nasty abscess had appeared on my stoma practically overnight.  Like one day it was a red spot, the next day it looked like a blister, the next day it was this giant two-inch monstrosity that had popped in several places and was oozing pus everywhere.  To make matters worse, it appeared to have a hole that opened deep into the stoma, so that stomach fluid flowed into it, making it impossible to keep clean.

I was seeing a surgeon to see what, if anything, he could do about the abscess.  Which, at this point, had been there for two months.  (Antibiotic scripts were being mismanaged which made it last far longer than it needed to and in potentially dangerous ways, according to the infectious diseases specialist I finally managed to see after four months of this.)

His immediate response:

“I can’t do anything.  Even if I could get rid of it, you’d just get another.”

This seemed like an odd statement to me.  I’d had my tube for years and never had more than minor skin complications.  I got compliments all the time on how well I took care of my stoma.  This was the only time something like this had happened.  And even if it was likely to happen again, that seemed like no reason to allow a giant painful disgusting infected pusball to fester indefinitely and get worse.

But I realized this wasn’t just his considered professional opinion when I mentioned offhand that I was soon going to get surgery to insert a separate J-tube to replace the GJ-tube and get rid of the ulcer.

“I don’t see the point in that.  Even if you make one ulcer go away, getting a new tube in a new spot will just rub somewhere else and create a new ulcer.”

That’s when I realized a pattern.

And the pattern wasn’t that he actually would have said this under ordinary circumstances.

The pattern was he had already written me and my situation off as not just unfixable, but there being no point to fixing it.  Then he wrote off any problems as inevitable and likely to recur.

Imagine if you took your child to the doctor for an ear infection, and were told, “We won’t treat that, he’ll get another anyway.”  Yes, he probably will get another anyway.  You still treat ear infections.

I’ve never gotten another abscess so far.  It’s been years.

I’ve never gotten another ulcer so far.  It’s been years.

But even if I did, those aren’t things you leave alone if you want to live.

And that’s the thing.

If you have a feeding tube, some people see you as half-dead already.

If you have a developmental disability, some people see you as half-dead already.

I knew a guy with a developmental disability who had to go to the emergency room for a bad infection.  His communication system was limited to actions, facial expressions, and seven signs in sign language, he had spent most of his life in a state institution, he was brown, and he was a ward of the state.  That makes him an unperson to most medical professionals.  They told his staff, “He won’t live out the night,” without even examining him.  Then they tried to walk out without ordering treatment.  She had to scream at them to get him basic, simple medical treatment that would’ve been given to anyone else. He got it, he got over the infection quickly.   This was at least 15 years ago and last I heard he’s still alive.

That’s standard.

I’ve gotten it more times than I can count.

A relative has a lot of health conditions (many of which run in the family), and at one point was told there was no point in treating them because she was in her late sixties at the time.  This meant to the doctors that she was likely to die soon anyway so what was the point?  She had to argue that her female relatives often live into their nineties in order to get any medical care at all at times.  That is not something she should’ve had to say.  Her medical decisions matter no matter what the average lifespan is.  She was facing a combination of age discrimination and ableism (some of her conditions are rare and complicated and they didn’t want to put in the effort of learning, and I’m sure there were assumptions about quality of life and better off dead anyway in there).

This means that in actual situations where I’m trying to do a risk-benefit analysis, it’s very hard for me to trust that the information I’m getting from doctors is accurate.  Because there are situations where it really is not worth intervening to deal with something that’s gonna come back anyway.  Where the treatment is more damaging than the condition.  I have a few of those (including one where the condition is harmless but unslghtly and the treatment is painful and risky, for example).  But when doctors act like that’s the default situation, it’s extremely hard to know if they’re telling you the truth or not.

And in the wrong situation it can kill you.  Or lead to lots of work and unpleasantness and illness that could be totally avoided.

Feeding tubes are definitely one area where this happens a lot.  Many doctors don’t really know a lot about feeding tubes, assume complications are the norm, and assume that anyone with a feeding tube has no quality of life worth preserving by keeping us alive anyway.  That combination means they’ll assume any problems are automatic and inevitable consequences of having a feeding tube at all.  That any complications shouldn’t be fixed.  Either because they’ll come back right away or because they can’t be fixed at all.  And that there’d be no point in fixing anything because why prolong or improve the life of someone suffering as badly as someone with a feeding tube anyway?

These are all potentially fatal assumptions.  Fatal fatalism, I guess.  If you have any kind of unusual medical equipment or conditions.  Or if you are in any way not valued by the medical profession.  Especially if you’re not valued in a way that makes them think of you as dead, half-dead, terminally ill, socially dead, better off dead, or just waiting to die. Then watch out for this like a hawk.  Always think of the ear infection analogy.  If you weren’t better off dead to them, would they treat this?  Do they repeat this advice no matter what your actual problem is?  This is not valid medical advice, this is prejudice dressed up as medical advice.  And it’s an excuse not to treat you.  And it could kill you.  So be careful.