Posted in Death & Mortality Series

Everyone’s death belongs to them alone: What octopuses and hospice can have in common…

A sculpture of a skull with an octopus sitting on it.
Death and octopuses, who knew there was a cool sculpture that combined them?

 

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.

There’s a problem I’ve seen over and over in people like hospice workers (and this post is gonna focus on hospice, but it can be applied more broadly).  And it’s one of the things that made me reluctant to out myself as a Deathling.  Because there’s so many people with this problem, in Deathling-type communities, that I didn’t want to associate myself with it.  Because this problem can kill people.  And no matter how you feel about death personally, that’s not okay.

To describe it, though, I’m gonna start somewhere weird.  I’ve been reading a book about octopuses.  Or more about the author and her experiences with octopuses and thoughts about them.  I’ve been struggling to find a way to articulate the problem here.  And a passage from her book really helped, even though it has nothing whatsoever to do with either hospice or death.

It has to do with wild-caught octopuses captured for aquariums. But understand that I didn’t choose this passage because of my own views on octopuses.  Nor about Ken’s views.  Rather, because of the way Ken approaches his views on the matter.  Ken is an aquarium worker who, among many other aspects to his job, helps with transporting new octopuses to the aquarium.  The author asked him his opinions on catching wild octopuses, and the following is what he said (bolding in this and any other quote on this page is my own, added for emphasis):

How does he feel about capturing animals in the wild and sending them to a life in captivity? He has no regrets. “They’re ambassadors from the wild,” he said. “Unless people know about and see these animals, there will be no stewardship for octopuses in the wild. So knowing they are going to accredited institutions, where they are going to be loved, where people will see the animal in its glory—that’s good, and it makes me happy. She’ll live a long, good life—longer than in the wild.”

Montgomery, Sy. The Soul of an Octopus: A Surprising Exploration into the Wonder of Consciousness (pp. 188-189). Atria Books. Kindle Edition.

He might be right that he’s doing the right thing.  He might be wrong.  I’m not even going to go there.  That’s not why I brought this up.

He’s come to a conclusion about why it’s okay with him for this to happen.  It may be a good conclusion.  A reasonable conclusion.  A justifiable conclusion.  A right conclusion.  He might be making the right decision.  That’s still not the point.

The point is, it’s his conclusion that, for instance, the octopus is an ambassador.

The thing about ambassadors.  Real life ambassadors.  The literal kind who exist and do work that’s mysterious to me but has something to do with representing their countries to other countries.  Is they choose to be ambassadors.

It’s not the octopus deciding to be an ambassador for her species.

The author, Sy Montgomery, a volunteer at the aquarium, does not explore this matter any further or deeper.

But it’s an exact illustration of something that happens with many hospice workers and other people in the death industry.  And I’ve never heard anyone discuss this in public.  But I’ve seen it enough times to know what I’m looking at when I do.  And I know it’s horribly dangerous in a context where you’re working with dying people.

Deathlings like to think and talk about our relationships with death.  Most of us feel that we fear death less than we used to.  Or don’t fear it at all.  Most of us see death as embedded in life itself, as a necessary part of the cycle of life, even as potentially quite beautiful.

Those of us who’ve spent much time around actual death and dying, whether our own or other people’s, might also notice the power of Death.  The sacredness of it.  A depth and beauty and meaning that can’t be put into words or fit into blog posts.  When Death is near, either for you or someone else, the world can become transparent to love, transparent to light.  There is power and meaning there, on a level that even many atheists and agnostics will acknowledge as sacred on some level, for lack of a better term.

And there’s probably at least one blog post on what happens when you notice all that but forget to give Death the respect She deserves.  But I’m not gonna go there right now.  Right now, I want to talk about what happens to a lot of people who work in hospice or similar industries, who are exposed to a lot of death and develop something close to this understanding of it.  An understanding that I largely share — but as with the aquarium, that’s not the point.

The point is… there’s a level on which your personal revelations about death don’t matter.  The realizations you’ve come to.  The way they’ve altered your entire life for the better.  The way you see your job differently, as a sacred duty of sorts, now.  How you’ve accepted the deaths of your patients or clients, how that’s changed you, and them, and your relationshp to future patients.  All of these things that matter deeply to you.

They also don’t matter one whit on another level.

Just like octopuses don’t choose to be ambassadors.  People don’t choose to develop a terminal illness.  Most wild octopuses will never face the possibility of being caught and put in aquariums.  Everyone will die one day.  But these situations share one important thing in common.

The octopus’s viewpoint on captivity will have fuck-all to do with Ken’s reasons, or rationalizations, for participating in her capture.  The octopus has her own viewpoint.  And nobody stops much to consider her viewpoint in all of this.  They’re too busy with their own.

Everyone’s death is their own.

That’s my main point.  I’m gonna go off on a very long tangent.  But I do have a main point.  So I’m gonna repeat it, in bold, a LOT:

Everyone’s death is their own.

Everyone’s death is their own.

Everyone’s death is their own.

Everyone’s death is their own.

Everyone’s death is their own.

Everyone’s death is their own.

Everyone’s death is their own.

Everyone’s death is their own.  Everyone’s death belongs to them.  Everyone’s relationship to death, and to Death, is theirs.  Theirs.  Not yours.  Theirs.

That means it is not your job to bring their views of death more into alignment with yours.

That means it is not your job to sit there accepting and reveling in the beauty of their death for them when that may not be how they feel, or want to feel, at all.

And it is not your job to teach them that death is wonderful and beautiful and a part of life and everything else that Deathlings often believe.

That sacredness associated with Death… a lot of people don’t seem to realize this, or realize it fully enough to put it into practice, but coming into contact with that on a regular basis comes with responsibilities.  One of which is a deep respect for Death.  But there’s too many to count.  One, though, is not to mess with someone else’s experience of Death, even if their experience is not the one you want them to be having.

I don’t mean you should never talk about your viewpoint.

But sick and dying people can be very vulnerable.  This includes having reduced defenses against unwanted outside ideas.  Which includes your ideas.  Which means you have to approach any job involving death with the utmost caution and care.

And you have to stay on the other side of a firm line in the sand. And you have to be the one drawing that line.  Your patient may not be capable of drawing it, or aware that it needs to be drawn.  It’s not like terminal illness comes with an automatic manual given to you that tells you you’re vulnerable to accidentally absorbing the opinions of hospice workers.  Or what to do if you do notice.

Thsi may seem like a weird thing for me to have such an adamant opinion about.  It’s because no matter how it feels to you, this can lead to situations that are downright sinister.

Talking someone into accepting death sounds so wonderful, especially to Deathlings who usually have a particular view on death acceptance.  It sounds like the right thing to do.

But you could be talking someone into making a different decision about their medical treatment than they would’ve decided otherwise.

They may decide against a medical treatment that would give them a little more time in the world, time they really very much want.  The hospice system is already structured to discourage life-sustaining medical treatment, so it wouldn’t take much to tip someone over the edge into making a decision that’s against what they want at the end of their life.

They may decide against a medical treatment that would not make them live longer, but might help them live more the way they want to in their time left.

They may accept a medical treatment that they know is likely to result in them dying sooner.

They may accept the idea that they need to die on a certain schedule.  (I know that sounds weird, but this happens in hospice a lot when deaths are treated as  lot more planned than actual death tends to work.  And when you’re barely hanging onto life to begin with, you can end up having more conscious control over your time of death than you’d imagine someone would.)

They may make decisions that have more to do with the convenience of their hospice institution, than with their own desires and choices.  And these decisions may end up justified in the name of accepting and coming to terms with one’s own death.

They may start receiving a lot of praise and encouragement for adopting views similar to yours, with all kinds of consequences for all kinds of decisions they may make.

You might not understand their viewpoint.  You might decide that all decisions to prolong life in situations you wouldn’t want your life prolonged, are actually because of an irrational fear of death that must be overcome in order to be at peace.  And then you might persuade them and wear them down.  Until they are making very different decisions than the ones in their own best interest by their own values.

Just because you can’t fathom a reason someone would want to see Alzheimer’s through to the end and be kept alive at all costs, doesn’t mean there aren’t good reasons for this that have nothing to do with fearing death.

And.  Even if it does have to do with an irrational fear of death.  That is part of their relationship with death.  It’s not your place to decide why they ought to be making their decisions, any more than it’s your place to decide what decisions they ought to be making.

And no, I’m not saying nobody should share their opinions, or persuade anyone of anything, or try to change other people’s minds, ever.  But if you’re a hospice worker or healthcare professional, you’re in a position of great authority and power over your patients.  And that power comes with a responsibility to do your level best not to misuse it.  Which includes learning to guard against accidental misuses of power.

And when you’re dealing with the end of someone’s life, the potential for great harm from the misuse of that power is only amplified.  The more that potential is there, the harder you have to work not to misuse it.  And believe me, if you’re working on the end of the death industry where you’re dealing with the last days of the living, you’ve got more power than you are probably even aware of.

Michelle storms by with the crash cart. “They want everything done. She used the wrong language; she gave them an alternative. She said we can keep going.” She means Shreya, the resident. Shreya is in Michelle’s room. She comes out and goes up to the Pulmonary fellow. She looks concerned that she has done the wrong thing. I can hear her say, “Lactate’s seventeen, bicarb drip.” She opened a door she’s trying to close. They don’t know how to talk to families. They don’t know how to tell them it’s okay to stop. Doctors will almost never tell the family the patient is dying. Nurses will. Nurses have little phrases. Dana says, “actively dying.” Lori will say, “it’s irreversible.” When they ask me how the patient is doing and it’s bad, I’ll say, “You should prepare yourself for the worst.” Some nurses will try and sell DNR orders. They’ll ask, “Would you want to have chest compressions?” and they’ll clasp their fingers together and move their upper body like a jackhammer, or, “Would you want to be shocked?” and pretend they’re holding paddles onto a chest and then jerk their body like they got Tasered.

Kelly, James. Where Night Is Day: The World of the ICU (The Culture and Politics of Health Care Work) (pp. 76-77). Cornell University Press. Kindle Edition.

The above passage was written by an ICU nurse who has no problem with the practice of ‘guiding’ families in the direction of DNR/DNI (Do Not Resuscitate/Do Not Intubate) orders.

It’s a relatively common point of view that runs like this: It’s cruel to prolong life when the only thing a person is doing is suffering.  Quality of life is more important than quantity of life.  Patients and families who don’t choose DNR/DNI are either:

  • irrationally afraid of death
  • driven by strict religious beliefs (and religious beliefs that contradict the medical consensus are treated as a bad thing in this kind of context)
  • unaware how severely disabled a person often is after a resuscitation
  • unaware they’re “allowed to let go”
  • unaware of what a resuscitation actually looks like (pretty brutal, often)
  • unaware of the low success rates of resuscitation (because on TV shows resuscitation almost always works, whereas in real life it almost always doesn’t, or doesn’t work the way people expect it to)

So they genuinely believe they are sparing a person needless suffering by using the above tactics talk to people into DNR/DNI orders.  They think people who “want everything done” are simply ignorant of the medical realities.

My mother, who has coded before and probably will again (we have an inherited neuromuscular condition, hers is more severe at this point in our lives), does not have a DNR.

Doctors and nurses are always surprised, because she was a respiratory therapist for decades.  They say they’d expect any former medical professional to want a DNR order.

She says it’s because she’s a former medical professional that she does not have a DNR order.  She wants to live, is in her seventies, and knows firsthand the extreme bias in the medical professioin against both elderly and disabled people.  She’s had doctors refuse to treat her because of her age.  She knows we already have things stacked against us and that a DNR would be dangerous.

Laura Hershey, an activist from the Independent Living Movement (a branch of disability rights mostly made up of physically disabled people), had a friend in the movement who got talked into a DNR in this manner.  This is Laura’s account of what happened, written November 2, 1999:

Attitudes Towards Disability Prove Almost Lethal

A doctor entered, on his rounds.  […]  Becky and I both jumped in to tell him that Ginny wanted to talk to him about the DNR, that we thought she wants it revoked.

For the next fifteen minutes, the four of us engaged in a conversation that was difficult, both mechanically and emotionally. Through a painstaking exchange of yes-no questions, nods, scratchy notes, and lip-reading, Ginny conveyed her desire for every effort to save her life.

The doctor heard this message, was willing to hear it; but his obvious biases made him subtly resistant. Here’s how he posed one question to Ginny: “Would you want to be put on a respirator?” Ginny responded with a fearful, uncertain look. I instantly insisted on rephrasing the question like this: “If you couldn’t breathe on your own, would you want them to use a respirator to save your life, rather than letting you die?” Still with an apprehensive expression, Ginny nevertheless nodded, yes.

By the end of the conversation, Ginny had indicated unequivocally that she would want ventilation if necessary to save her life; and that she would want attempts made to start her heart if it stopped beating. The doctor agreed to remove the DNR order immediately.

Ginny had been weak with pneumonia, and with a trach making communication difficult, and they talked her into signing a DNR she didn’t want to sign.

I can say from firsthand experience that being sick and weak really does make it hard to fight off other people’s opinions of what is best for you.  This is even true when you’re 100% sure you disagree.  When I was hospitalized for aspiration pneumonia (and was also weak from malnutrition) and they were trying hard to talk me out of a feeding tube — I knew I wanted the feeding tube.  And without having had a lot of people in my corner, I’m not sure I would’ve been able to hold out for survival much longer.  Being weak even simply on a physical level makes it very hard to fight these things.

Ginny’s story continues, by the way.  This happens:

That was about a month ago. A lot has changed since then, mostly for the better. Ginny regained her voice, and began growing stronger once the infection left her lungs. She has repeatedly stated her intention to go on living, in front of a variety of witnesses. Her friends have stayed in touch with her, and her situation.

About three weeks after my visit with her, I heard that Ginny’s gradual recovery was abruptly interrupted when she went into respiratory failure. Emergency measures saved her life, and her recovery now continues.

Ginny would not have survived this if the DNR she was coerced into signing had stayed in place.

If you ever doubt the power your opinions might have, think of Ginny.  Pneumonia made her weak enough to have trouble fending off other people’s opinions.  It’s very likely that whatever nurse or doctor talked her into signing the DNR, used subtle persuasion of the sort described in that book by the ICU nurse.  It doesn’t take much persuasion or pressure when you’re already vulnerable.

I was simply walking down the hall of the hospital last time I was there, and there was a group of residents speaking to an attending.  The conversation I overheard was alarming.  They’d saved the life of a cardiac patient.  He was set to go home soon, without major complications.  The patient was extremely happy about this.  The attending was very unhappy about this and wanted to tell the residents why.

So the attending explained that while the man was going home without complications, that wasn’t the only possible outcome. And he didn’t think the man’s family should’ve chosen to tell the doctors to save his life.  He said it was possible the man could’ve ended up with a severe disability.  And therefore, it would’ve been a better decision to let the man die even though his life was saved and he was extremely happy with this outcome.

Medical professionals frequently believe this stuff is morally neutral information.  That in trying to persuade people to choose death over life, they are simply giving people the facts.  The thing is, you can choose which facts to give people, and what manner to present those facts in, and “giving someone the facts” turns into an act of persuasion.  And you don’t even have to mean to do so, for this to happen.

If You’re Interested In Power & Control…

Power Tools by Dave Hingsburger
Power Tools by Dave Hingsburger

Anyone interested in the use and misuse of power in human services professions, could do a lot worse than reading Dave Hingsburger’s book, Power Tools.  I always plug this book.  It’s extremely short and easy to read, but contains a lot of important information on how to recognize your power over other people and how to do your best to avoid misusing it.  It’s available from Diverse City Press. Or Amazon.

He also wrote another book of the same size, shape, and potency, called First Contact.  It’s about communicating with people with (presumed) profound cognitive impairments.  And it’s also well within the topic of this post, given that this level of cognitive impairment is often the fate that medical professionals are trying to save us from when they push DNRs at us.  You might want to pick that one up at the same time you get Power Tools.  They go well together, and both of them contain real-world wisdom that applies to a lot of everyday life situations beyond the ones explicitly described in the book.

First Contact: Charting Inner Space (Thoughts about establishing contact with people who have significant developmental disabilities) by Dave Hingsburger
First Contact by Dave Hingsburger

While I’m shamelessly plugging Hingsburger’s work, he has a blog called Of Battered Aspect.  And there’s a longer review of both Power Tools and First Contact on the website of the old disability rights magazine, Ragged Edge, called Same, Different, Human.  A quote from the review that mirrors my thoughts on these books:

The subject matter may appear limited to the service systems concerned with people with intellectual impairments, and Hingsburger’s focus is the individual rather than society. Nonetheless, I commend these books to you.

I read Dave Hingsburger as an ethicist. Not an ivory-tower Ivy League ethicist, mind you, but rather one who worries how to live well amid the blood, the shit, and the chains that surround him. Instead of offering moral axioms from some fake-objective standpoint and then applying them to whitewashed situations, he acknowledges the ways in which the commitments he has made and the messy situations in which he finds himself shape his moral development and his moral outlook.

Many of the other writers on my shelf take a political approach to the problems of power and powerlessness, to the problem of disability, asking how communities, organizations, nations should act. What does justice demand? they ask. How can we address injustice?

Hingsburger’s stance is more ethical than political, though it is also concerned with disability. How, he asks, should I, an individual, respond to the people around me? Very often, the people around him, the people to whom he is responding, are disabled people. It’s not that he pretends injustice away, or that he treats it as irrelevant; it’s just that even when he addresses injustice, he confronts it in an ethical sense, as an individual. Even when he addresses the politics of disability — the self-advocacy movement — he is concerned with his relationship to it.

His primary ethical concern is interpersonal, and his rule is awareness: awareness of the moral risk in any important action and awareness of one another. “People don’t hurt people. People hurt things,” he quotes Dick Sobsey as saying (First Contact, p. 20). And he acknowledges that such awareness, such self-knowledge, is much more difficult than it looks.

Like Cal Montgomery, the author of the review, I can’t stop recommending these books.  To the point I keep a supply of multiple copies each because people walk off with them and forget to return them.

Now back to your regularly scheduled blog post on death and octopuses…

When I was writing this post, I tried to Google statistics on resuscitation. I found a news article alarmed me.  Not because of the statistics, but because of the way it was  point of the article was to inform people that resuscitation in real life is not like in the movies, either in terms of statistics, outcomes, or the level of violence it does to the person’s body.  But the article made it impossible for me to understand the statistics.

See, every time it mentioned death, it mentioned severe disability in the same breath.  I was trying to look up survival rates.  But it was so ambiguously worded that I couldn’t tell whether survival with a severe neurological impairment requiring lifelong care counted as survival for the purposes of the article.  And no matter what you think of the “quality of life” issues involved (I, like Laura Hershey and many other disability rights activists, am extremely wary of that phrase), being alive and unconscious is still being alive.  And there’s plenty of new evidence that people presumed unconscious based on outward responsiveness are not always unconscious at all.  Which may horrify you in completely different ways, but it’s still being alive.  And I never did figure out what the statistics in the article meant.

Disability is often considered a fate worse than death.  And while I consider the fear of death and the fear of disabiliy deeply intertwined, many Deathlings, and many hospice workers, have conquered one without touching the other at all.  An extreme fear of disability, combined with a lack of fear of death, can make people view death as the answer to a type of disability they greatly fear.

This is an extremely common perspective among medical professionals, including hospice workers.  And it’s the entire point behind DNRs, living wills, and the like.  These are not documents that were created to offer a neutral set of choices to people.  They were created to make it easier to say “This is the level of disability at which I would rather die.”  You can use them to say other things, but there’s pressure not to, and it’s harder to get such wishes upheld in any circumstances where someone disputes your wish to stay alive.  It’s much easier to use a living will to die than to use it to live.

Anyway, medical professionals have been shown to rate disabled people’s quality of life lower than we rate it ourselves.  There’s a very jargon-heavy paper called Quality of Life, Disability, and Hedonic Psychology (that’s a PDF link) that deals with the topic of disability and quality of life (abbreviated QOL in the article) in a fair bit of depth.

One belief about QOL has been very widely demonstrated. Nondisabled people believe that the QOL of people who live with disabilities is extremely low. This belief will be termed the standard view of the QOL of disabled people.  The standard view is faced by an apparent falsification: When disabled people report about their own QOL, they rate it only slightly lower than when nondisabled people self-report their own QOL. This produces the anomaly of the QOL of disabled people (Amundson 2005). The anomaly is the pair of conflicting assertions: the standard view on the one hand, and the conflicting self-reports ofdisabled people on the other.

[…]

In fact, nondisabled health care professionals judge the QOL of disabled people to be even lower than the judgments made by nondisabled people who are not health care professionals (Duckworth 1988; Brillhart, Jay, and Wyers 1990; Bach and Tilton 1994; Gerhart et al. 1994; Albrecht and Devlieger 1999).

[…]

If hedonics researchers believed that disabled people were kidding themselves about their own QOL, nothing would stop them from saying it. I therefore propose that we ask them who’s right about the QOL of disabled people. Does hedonic research support the standard view that disabled people have an intrinsically low QOL? Or is there evidence that the standard view is mistaken, and the disabled people who report a high QOL are correct when they do so? Hedonic psychologists may not have the last word in the debate, but their contribution must be considered. The results are these: according to the experimental results of hedonic psychology, the judgments of nondisabled commentators about the QOL of disabled people are far more likely to be mistaken than are the self-reports of disabled people.  

So basically, nondisabled people in general assume that disabled people are much unhappier than we are and have very little in the way of ‘quality of life’.  And medical professionals judge our quality of life to be even lower than your average nondisabled person judges our quality of life to be.  Meanwhile, disabled people are roughly as happy or unhappy as nondisabled people (there’s many possible reasons for our quality of life to rate slightly lower that don’t actually reflect disability as much as the way it’s tested, but I don’t have the time or space to get into all the details), and certainly much happier than either nondisabled people in general, or medical professionals, assume we are.

So if you’re a medical or hospice professional, advising dying people on life and death decisions involving disability, you’re also likely to be judging our quality of life much lower than it actually is.  And as a medical professional, you’re more likely to be biased in that area than someone who isn’t a medical professional.  The presence of a known bias, like the presence of power, requires much more increased carefulness to be taken with how you wield power around people.

And the above is just one major way this can go wrong.  It’s a way I and many other disability right activists are highly familiar with, which is why I was able to go into so much depth.  I could really go on all day.  But hopefully it’s enough to show you there are dangers you might not even be aware of.

So now that I’ve tried to get way too much information crammed into one blog post, the basic point I want to make?

Everyone’s death is their own.

Being accepting of death is a wonderful thing, in my eyes.  But there are many different ways of accepting death.  And no matter how valuable it is to you that you have accepted death, you have to be really careful as a healthcare worker, not to impose your own ideas about death on people who might not want them.  However an octopus feels about captivity is the business of the octopus, and how a dying person feels about their own death is the business of the dying person.

Everyone’s death is their own.

Given the biases of healthcare professionals around disability, and the power they have over disabled people (and dying people are generally either disabled or about to become disabled), it’s especially important for them to keep this in mind.  It’s very easy for death acceptance in these circumstances to become something much more sinister.

Everyone’s death is their own.

But it’s also a matter of respect:  People’s death is deeply personal and for lack of a better word, sacred.  And people’s own death belongs to them.  It’s not yours to mold into a shape you find more fitting.  No matter how appealing your own beliefs about death are to you.  The other person might have very good reasons for beliefs that mean something to them.  

Everyone’s death is their own.

There really is an idealized death, or an idealized set of deaths, that is pushed wholesale on hospice patients.  People who work in hospice often come to absorb this view of death, and of how death should happen.  But actual patients of hospice may have very different experiences.  Experiences they are afraid to even bring up out loud, because of the power relationships inolved.

Everyone’s death is their own.

And if you care about a person, you want to meet them where they’re at.  It’s impossible to truly know another person, to even begin to understand them, if all you can do when you see them is look in the mirror.  And when you get too wrapped up in your own reflection, you can’t see anyone else, you can’t know anyone else, you can’t connect with anyone else.  And if you can’t see who someone is even a little, you certainly can’t accurately perceive their relationship with death.  Nor can you respond to it in a way that’s even halfway adequate.

I’ll leave you with an excerpt from Dave Hingsburger’s First Contact:

When considering making contact with people who have multiple disabilities – those who are considered to be so significantly mentally disabled that they are in a “vegetative” (that’s what it’s called) state – there is a huge obstacle. Prejudice. Yours. Mine. Ours. Against them. The difficulty here is that prejudice will feel like pity. You may be overwhelmed by a sense of hopelessness first, and then, if you examine the feeling long enough, terror.

They can’t be “like us” because then the logical extension of that is that they must be “feeling in there” and what they are feeling in there is what we’d be feeling in there – desperation, hopelessness, isolation, loneliness. The misuse of your sense of identification with the person inside that body will lead you to think horrible thoughts.

Dangerous even.

“I’d rather be dead than be like that.”

“If I was like that I’d like to be smothered.”

Well, back off. This isn’t about you. Catching a first glimpse of a soul inside a body that is so different from your own can be frightening, true. But it can, if you work hard enough, be exhilarating. I know, I know, I know, you have to “walk a mile in their moccasins.” The temptation is to engage in an incredible waste of time and psychological energy – spending time imagining what it would be like to be you inside them. How egocentric is that?

The issue is coming to understand and to get to know what it’s like to be them, in them. That’s the joy of contact, of connection. It allows us other perspectives. The placing of ourselves inside someone else and then imagining what it would be like, is not learning – it’s like masturbation but without the stickiness. And while it’s fun, and it is fun, it’s not particularly valuable.

And it gets in the way.

How can you make contact with someone when all you see reflected in their eyes is your sad face? Get out of the way. Understand that you are you. You are only you. Now look again, look past your own reflection and what do you see?

The answer?

Some one else.

Cool, huh? Even cooler is to discover who that person is. To do this you need to step by prejudice. Please, please, please, don’t delude yourself into thinking that you don’t harbour anti-disability sentiments inside your heart. Please don’t say, “but my child…” “but my best friend is…” or even “but I’m…” We everyone of us is prejudiced against those who are different. Awareness is the first step.

And that is why obtaining a copy of those two books is so very worth it.

And remember — everyone’s death is their own.  If you work with dying people, don’t stare at your own reflection.  Get out of your own way and deal with them, and their relationship with death, on their own terms, not yours.  And whatever you do, don’t use their death as a vehicle for your own desire to be close to the beautiful side of death.  I promise it will be better for you, and more importantly, for them.

Everyone’s death is their own.

 

Posted in Being human, cats, language

I used to volunteer to socialize with the cats at the local shelter.

I loved just sitting in a room with them.

We didn’t need to play.

We sat.

Little messages passed between us barely seen by most people.

The flick of an ear.  A tail.  An eye.  Just for a second.  The posture we sat in.  The direction we were pointed.  It all meant something.

I don’t pretend to have grasped all the communication going on in that room.  Some was by smell, or otherwise inaccessible to the average human, or any human.  Some was cat things only cats know.

But you could get a feel for things.

Sometimes.  Like right now.  Right exactly now.  I wish that I could show things indirectly, with ear and tail and whisker and eye movements, and be understood.

Sometimes.  Like right now.  I know where my ears would be if I was a cat.  (Cat ear muscles and human ear muscles — same muscles, very different ear positions.  :-/   Doesn’t translate well across species lines.)

But as much as I know I am not a cat, I sometimes feel a lot like a cat, sitting in a room with cats, my best communication being in Cat, and feeling helpless to do it in Human.   😦

This applies right now.  This also applies a hell of a lot of the time.

Photo on 8-27-18 at 12.36 AM
No ears, no whiskers, no tail, limits communication greatly.
Posted in Speech

New blog topic: Speech

I am going to be starting another blog topic series of posts, probably. This one is about speech. I haven’t really written a lot about my experiences of speech in recent years, but things have changed in two major ways.

One is that I’ve unintentionally developed a small amount of speech that actually works.

This is not enough for me to consider myself a speaking person. But it’s more than I’ve ever had in my life. By which I mean, even when I sounded much more fluent than I do now, I never had a consistent set of words that would communicate my thoughts. I didn’t have consistent anything. I now have kind of a consistent baseline that’s communicative. As usual with these things, I’m discussing what’s really happening for me, not what appears on the surface.

The range is very limited though. I’ll get into what it is later because I think that’s important information for other people with speech problems. But for instance, it started out with just cuss words and words that were highly emotive. That’s still my strongest set of speech. Also things you would say to a cat. And what I call ‘corner words’, which will probably require a lot of explanation. But this is all highly limited and narrow areas with high walls around them. This is not something where I can substitute it for typing and have it work. Instead it sort of enhances the typing.

Most people I know who type to communicate and are considered non-speaking actually have some amount of this kind of speech, by the way. It’s just not enough to use as your main way of communicating. Very few people are 100% speaking or 100% nonspeaking, and which one you’re considered seems to vary a lot. And depend on far more than what speech you have.

So… the other thing that’s happened, and that I’m more interested in discussing in some ways, is what I call emergency speech.

It is not voluntary. I can’t turn it on and off at will. It is not frequent. It has happened a handful of times in the huge amount of years I’ve spent not speaking. It does not always happen even when it could be very useful or even life-saving. But it does happen sometimes.

And that is where i gain fluent speech for anything from seconds to weeks, always in the context of a medical emergency of some kind.

Again I can’t emphasize enough, this has happened a handful of times. This is not something I can turn on and off at will. And it doesn’t even happen every time it’d be useful.

And it does something horrible to my brain — well lots of horrible things — that I really want to discuss, because it’s clear that fluency of that level only happens by cannibalizing large parts of my brain functioning. In ways that are spectacular and potentially dangerous.

And I think that’s important to document.

I think it’s important to show what happens when someone’s brain forces the issue of doing something that it really has no business doing.

Because it’s ugly as fuck.

I used to just go with it and figure my instincts knew best, but at this point I am doing my best to shut it down whenever it happens, because the results are pretty terrifying.

And I think that’s important for people to know.

Also, this is not an unheard-of phenomenon. I have spoken to researchers about it. And I’ve noticed it in both official literature, and in accounts by parents.

One of the most terrifying — especially now that I know the consequences of emergency speech long-term, but even before that its as terrifying — is these parents who’ve discovered that their children who can’t normally speak, speak more fluently and are more social when they have high fevers.

What’s terrifying is that given the world of disability parenting and autism parenting in particular, instead of seeing this for what it is, there’s a group of parents who see this emergency functioning mode as a good thing. And therefore attempt to do things to give their children high fevers.

Like. Not only is that abusive and unethical and medically dangerous. But also forcing a child to function in emergency mode — especially while sick — will do terrible things to them, especially over the long term. And nobody will connect the dots because nobody really gives a shit about the effects of overtaxing people’s limits. And emergency mode is all about going beyond your limits for a short time — like a mother lifting a car off a child despite not normally having the strength. You couldn’t and shouldn’t do things like that every day, they happen only in emergencies for a reason.

Anyway I have a lot to say about speech. And I haven’t really written a lot on the topic and on the changes I’ve been through in recent years with baseline speech. And I haven’t written about emergency speech either. So these are both broad topics that I want out there mostly for the benefit of other people experiencing them. I’ve always benefited from other people describing their experiences of things, so my intent in writing about this is to possibly benefit other people in this same way. And also to warn people of the dangers, because there are actual dangers here. I didn’t realize how dangerous emergency speech is until I got stuck in a cycle where it kept popping up long after it was sustainable to continue.

Posted in Being human, Developmental disability service system

Please quit telling me to ‘calm down’ when I give urgent information or ask questions.

I’m going to lead with a quote from Jim Sinclair and discuss it:

Most autistic people who are capable of formulating questions have frequently experienced the following scenario: We ask for information that we need in order to prepare ourselves for a new experience. Instead of answering our questions, NT people tell us that we don’t need to ask these questions at all. We just need to relax and stop being so anxious. The fact is that being able to ask questions, and getting clear answers to our questions, and thus knowing what to expect, are often the very things autistic people need in order to be able to relax and not be anxious. Asking a lot of questions about the details of a situation is usually not a “maladaptive behavior” that increases an autistic person’s anxiety. More often it’s an adaptive strategy that an autistic person is using to reduce anxiety or to prevent being in an anxiety-provoking situation in the first place. It’s very important for us to have thorough explanations and ample opportunities to ask questions.

Jim Sinclair, Cultural Commentary: Being Autistic Together

So first off be aware this quote is from a specific context.  It’s an extremely long article on specific experiences of autistic people’s self-created communities and cultural values.  So if your first impulse is to think “But it’s not only autistic people who’d encounter this,” you’d be totally right.  But you’d also be missing the fact that it’s quoted out of context from an article that is about autistic people, so it’s gonna mention autistic people explicitly.  Just like an article by and about transgendered people is gonna mention transgendered people explicitly.  It doesn’t mean it doesn’t apply to anyone else in the world.

Anyway, I mostly agree with Jim.  My only disagreement is the role xe puts on anxiety in the first place, when I often encounter this in situations where anxiety is not even a factor.  When it is a factor, it works exactly how xe says it works.  But it’s not always a part of things in the first place, and then people just drag anxiety into it as if you must be anxious because they think you are.

Example of something that had absolutely nothing to do with anxiety:

I go into the emergency room around 8:30 pm one night to be seen for cellulitis.  I’ve been told (I later find it’s untrue) that I’m not allowed to bring meds from home to the ER.  I know that I’m likely to still be there at 11 pm, when I am due a dose of hydrocortisone that is extremely time-sensitive: I can’t survive without hydrocortisone and my body makes absolutely no cortisol.  I know that this hospital doesn’t have liquid hydrocortisone that can go through a J-tube,and that the pharmacy has to make a suspension by hand, and that this takes time.  So I know they’re gonna need advance notice if I’m going to get this medication on time.

So after describing the infection, I mention to the triage nurse that this is gonna be a serious issue if the med gets missed or delayed, so they probably want to prepare for the situation in advance.  I ask if this is something they can do and be aware of so I’ll actually get the meds.  I’m doing this in front of an on-call staff person who doesn’t really know me that well.

The on-call staff person immediately starts all the crap they’re taught about calming me down, redirecting me, making sure I don’t have any anxiety, and telling me not to think about the hydrocortisone.  I get pissed off and tell him it’s important.  He tries to “de-escalate” me.  It goes round and round and round.

Mel attempting to look calm.
Do I appear chill enough yet to have a conversation without being told to calm down every time I say something!?!?! WTF.

The time gets nearer, and I am now back in an ER room, it’s approaching 11.  So I’m without information about whether they’re working on this, and want to make sure it’s actually happening.  So when the doctors and nurses are back there I’m talking to them about it.

And the staff person is saying it’s not eleven yet so I need to stop ‘worrying’ (preparing people in advance for something that needs to be on time and takes time to do, especially in a busy emergency room when I’m not there for adrenal insufficiency) until it’s actually eleven at which point we can address this.

And any time I seem annoyed with him, or concerned, or even try to discuss the matter, he says it’s anxiety and I just need to calm down and not think about it and everything will work out fine.

Everything did work out fine, but only because I did prepare them in advance, so they had time to write the orders and get the suspension manufactured in their pharmacy and delivered to them by eleven.

I also learned you are allowed to bring meds into the ER, that night.

But anyway, that’s a good example of where there was no anxiety at all involved.  I was not trying to alleviate anxiety by giving information and asking questions, I was trying to get something practical done that required advance planning.

I might have ended up anxious if there were signs they weren’t listening to me.  But in that case calming down wouldn’t have been relevant, what would’ve been relevant would be finding effective ways to advocate for what I needed.  Which generally requires talking about something, not pretending it’s all gonna be okay.

Doing what the staff person said in that situation wouldn’t have just been anxiety-provoking, it would’ve been physically dangerous to me.  

Often the information I am asking for, when I ask questions, is a similar situation:  I need the information in order to make an informed decision about something important.  Other people may not know why I need that particular information, but I need that information.  Without the information, I can’t make the decisions I need to make.  And the decisions may be, and often are, important medical decisions.

And I’m often deliberately left in the dark.  People give me as little information as possible.  And when I ask for information, it’s treated as an emotional issue:  Frustration, anxiety, pushiness, stubbornness, whatever.  When if you just give me the information, I generally know what to do.  And people are always trying to fix my emotions (as if they need fixing) instead of just giving me the information I need.

Quite often, anxiety won’t even arise until you withhold information from me.  And then anxiety is just the by-product of a situation that will go away once I have the information.  But even so, I’m not usually asking questions to make anxiety go away — even if it does make anxiety go away to get the answers.  I’m asking questions to get information that I need for a practical purpose.  Anxiety, if it happens, or goes away, is just a by-product of the situation, not the focus of the situation.

There is no faster way to cause me some combination of anxiety, anger, rage, fury, and frustration, though, than to try to fix my emotions rather than try to give me information.  This goes double if you try to fix them by manipulation that you think is subtle.  It’s not.  I know what redirection is.  I know what it means when you accuse me of ‘escalating’ — as if you have no part in making the situation worse.  I know what all of your jargon is and what you have been taught to do about ‘situations’ like this one.

And the best possible thing you can do is give me all the information I need, including information I don’t have access to, or assist me in obtaining the information I need, as quickly and thoroughly as possible.  Be on my side, don’t sit there trying to calm me down.  And certainly don’t tell me to take a deep breath and calm down, focus on something else, watch television with you, or some other random crap.

And by the way, the respectful way to approach a discussion about whether I have anxiety I want calming down from, is to ask.  And ask in a way that makes clear you will accept any answer, not in a way that makes it clear that you expect me to say “Yes, I am making myself anxious by thinking about this and need to take my mind off it” or something.

And then if I do say yes, then you can ask me if I want help finding strategies to do so.  And then you can ask me about whether any particular strategy works.  You don’t just apply strategies at me or shove them down my throat.

It’s really not that hard to be respectful.

But it’s very easy not to be respectful.

It’s not respectful to jump in and assume that I’m making myself anxious and want you to help me calm down.  Or that I’m making myself anxious and need you to help me calm down whether I want you to or not.

It’s not respectful to jump in and start manipulating me into calming down.  By manipulating, I mean all the things you have been taught about how to calm people down without telling them that’s your actual intent.  Like distraction, redirection, and other things that rely on the person not knowing what you’re trying to do.  Anything where you’re not being open and explicit about your intent to calm the person down, and anything that uses covert force, is manipulation.

Staff manipulate clients more than clients manipulate staff, but clients get called manipulative for doing ordinary people things that have no manipulative intent whatsoever.  So it might surprise you to hear these things described as manipulative.  But they’re manipulative.  (Clients do manipulate staff sometimes, but we generally do it because we have to in ways you may sometimes have trouble understanding.  Staff are taught to habitually manipulate clients, it’s very hard to be staff and not manipulate clients.)

Just about every strategy for changing someone’s behavior and feelings without them knowing is maniplative by nature.  That’s what manipulation is.  Many strategies for changing people’s behavior with them knowing is manipulative.  All behavior modification is by defintion manipulative whether it’s obvious behavior mod or subtle behavior mod.

Manipulative is not always bad but it is always an exercise of power.  Staff manipulating clients is especially dangerous at the best of times, because of the direction the power flows.  It should not be something you just pull out of your pocket every time you think someone needs to calm down.

It also helps not to be afraid of other people having and showing emotions other than happy shiny ones.  Sometimes people get stressed out, pissed off, freaked out, upset, and all-around discombobulated.  Sometimes people show it.  It doesn’t always need to be fixed and tidied away to accommodate your discomfort.  And often it’s a sign something is going wrong — like not having enough information, or not being listened to, or not getting the chance to give the right information to the right people — not a random thing a person is just feeling for no reason that needs to be brought under control before you even understand it.  These are perfectly natural reactions, you don’t have to manage them for us at the first sign we’re less than 100% chill.

Attempts to manipulate me into calming down will nearly always backfire because I can spot the manipulation a mile away and will get pissed off.  If you don’t want that result, don’t manipulate me.  Treat me with respect instead.  It’ll get you far.

 

 

Posted in Being human, Californication, culture, family, history, medical

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.