Posted in Developmental disability service system, HCBS

The apparent dignity in being a slob, and the terrifying catch-22 on the other end.

When you’re a slob, you don’t have to tell anyone that the reason you never did laundry in 9 months is because you didn’t know how despite being taught just as well as your brothers.

When you’re a slob, you don’t have to tell anyone that if you don’t change clothes for weeks or months on end it’s because dressing yourself has always ranged from difficult, slow, and exhausting to impossible depending on the circumstance.

When you’re a slob, nobody has to know that you actually don’t know how to shower, no matter how long you stay in there and go through the motions.

When you’re a slob, people think you’re gross but they don’t think you’re incompetent.  They think you’re the sort of person they don’t really want to smell, but you’re neither disabled, nor like some of the spoiled brats you went to school with who could’ve taken care of themselves but always had someone to do it for them so never learned.

When you’re a slob, people think you make bad choices but they don’t think you’re pathological.

When you’re a slob, people find you sort of relatable as a human being still.

When you’re a slob, and only a slob, they don’t tell you that you can’t live on your own and need your civil and human rights taken away for your own good.

There are other consequences to being a slob, mind you.  But sometimes it’s easier to be a slob in other people’s eyes — someone who’s made a choice, even if one they think is lazy and morally wrong — than to be a retard.  And I’m using that word advisedly, because that’s the word they’re thinking about you, not something sanitized and pretty.

And when you’re a slob, you can convince yourself you’re in control of all this, even if you’re not.

But seriously.  When you’re a slob, you get to be a human being.  Sometimes it’s just easier to say, “I’m a slob,” “I’m such a procrastinator,” “I don’t care about my appearance,” “I’m so gross,” whatever, keep it relatable, keep it human, but it’s a lie.

Because I don’t actually want to live in unsanitary living conditions.  I don’t want to laugh it all off over and over again.  I don’t want to watch my remaining functioning crumble out from under me because I’m physically and cognitively unable to keep my environment uncluttered enough to function.  These are not situations I have ever wanted.

But I’ve endured them.  Over and over again.  Allowing people to believe what they will.

For so many reasons.

So I could retain the dignity of being considered merely a flawed human being and not a walking pathology.

So people wouldn’t declare me too incompetent to live on my own.

So many reasons.

And then I’ve watched a friend with a developmental disability get told that the infected ulcers on her legs were the result of a “lifestyle choice” — both by Howard-Center-appointed testers who refused to acknowledge she was unable to bathe herself, and by VCIL who at the time catered to wheelchair users and she “only” used a cane — and I’ve wanted to spit nails.

Because that’s the fucking flipside, the catch-22 of being a slob.

Is they can just call you a slob when they want to deny you help you need.  Help that may be at the level of survival, like it was for my friend with her infected leg ulcers.  Like anyone would be so much of a slob that they’d get infections on their legs and go to the trouble to seek help to get services to get help bathing.  That’s not how it happens, people.

But all these things have a catch-22 angle to them.

Admit you need help and they’ll ‘help’ you right out of your right to live in your own home.

Insist on your right to live in your own home and they’ll hold you to impossibly high expectations and try to deny you help and call it a ‘lifestyle choice’ when you can’t do the things.

Be a slob and be denied help because slobs don’t need help they just need a kick in the pants for their laziness.

Admit you’re not a slob and if they believe you, you might be shunted into a nightmare world against your will.

There are no right ways to be developmentally disabled around here.

And I’m hearing horror stories.  About people suddenly being pushed to do things on their own they’ve never done before.  And if they manage it even once even for a little bit, they’re told they don’t need help, sent on their way, hours cut partially, or cut out of services altogether.

There are no right ways to be developmentally disabled around here.

We aren’t supposed to exist anymore.  We’ve become too inconvenient.  We’re the reason their agencies even exist, we’re the reason they have a paycheck, but we, ourselves, as people, as messy human beings who need their assistance to survive, are too inconvenient.  So they’re Xing us, one by one.  Or trying.  We need to resist Xing with everyting we’ve got.

For the time being, I'm still here. Big, fat, hairy, smelly (the VNA is short-staffed, I can't frigging help it), and all. And I intend on remaining.
For the time being, I’m still here. Big, fat, hairy, smelly (the VNA is short-staffed, I can’t frigging help it), and all. And I intend on remaining.
Posted in Weave of Traditions

All of Pride Month I felt like I couldn’t talk about my favorite Pride jewelry.

A tightly woven grey fabrc with the following quote written over it: "The tight weave of traditions that makes a comfortable hamock for some just as surely maks a noose that strangles others." -Anneli Rufus, Party of One: The Loners' Manifesto
A tightly woven grey fabrc with the following quote written over it: “The tight weave of traditions that makes a comfortable hamock for some just as surely maks a noose that strangles others.” -Anneli Rufus, Party of One: The Loners’ Manifesto

This post is part of the Weave of Tradition series.  Please read the introductory post to that series to understand more about this post’s intent and context.  This series deals with traditions, language, and symbols that mean very different things to different people.

I mean, I love the rainbow bracelets i managed to get, with “LOVE WINS” and that kind of thing.  Don’t get me wrong.  But that’s my acceptable Pride jewelry, and some of it actually makes me vaguely uncomfortable to wear.  But it doesn’t make anyone else uncomfortable.

Two Pride bracelets. The first one is a leather rainbow with an infinity sign that says "love", another part that says "LOVE WINS," and a heart dangling off the botom. The second one is a bangle with a rainbow heart, another "LOVE WINS," another infinity, and a double-woman symbol.
Two Pride bracelets. The first one is a leather rainbow with an infinity sign that says “love”, another part that says “LOVE WINS,” and a heart dangling off the botom. The second one is a bangle with a rainbow heart, another “LOVE WINS,” another infinity, and a double-woman symbol.
Pride jewelry: A small rainbow chainmail love knot.
Pride jewelry: A small rainbow chainmail love knot.

The part that makes me uncomfortable is the double-woman symbol.  Everyone knows it means lesbian, so it’s convenient.  It’s in no way controversial, so it’s convenient.

But… it demands things of me I’m uncomfortable with.  It reflects back at me a narrow definition of lesbian as a person with a female gender identity attracted exclusively to other people with female gender identities.  A definition that has no room for me in it.  But that has become popular lately and crowded out older, more inclusive, broader definitions of lesbian, ones that still have a place for a person like me, with no innate gender identity and complicated attractions.

I know the double-woman symbol doesn’t mean that to everyone who uses it.  But it feels like that meaning to me, so it feels uncomfortable to wear it.  Even as I do wear it.

Meanwhile I prefer to wear a symbol that makes a lot of people uncomfortable.  And they have good reason to be uncomfortable.  I’m not taking that away from them.  As I’ve said — the same word or symbol can make different people feel very different.  Even different people with relatively similar labels, life experiences, etc.  These things can be deeply personal.

I happen to love the labrys.  These are the earrings I wore all Pride and continue to wear now:

A labrys earring on my right ear.
A labrys earring on my right ear.
Mel wearing two earrings on hir left ear, one a redwood cone, the other a labrys.
Mel wearing two earrings on hir left ear, one a redwood cone, the other a labrys.

I shouldn’t have to say this, but for clarity:  I am not a lesbian feminist, a radical feminist, etc.  I believe trans women who are lesbians are lesbians, no questions asked.  I don’t wear the labrys as a statement about anyone else.

The reason I love the labrys is complicated.  But the part that might surprise people:

A labrys has never demanded anything from me when it comes to gender identity.

Yeah, I actually prefer the labrys because it does not impose anything on me with respect to my relationship with gender.  Nothing.  Never has.  People who use the labrys have, sometimes.  But the labrys itself hasn’t.  And contrary to popular belief, the labrys has been popular in many circles that have nothing to do with the ideologies most people associate with it.

So I wore labrys earrings all of Pride Month but I never talked about them.  I was afraid to.  I was afraid people would misunderstand my intent, misunderstand my relationship to the symbol, misunderstand the whole thing.

Especially when you combine it with statements like “I’m a genderless lesbian.”  But my genderlessness is not ideological or political, it’s a hard-won truth about myself.  it just means I lack any innate sense of myself as having a gender, and always have.  Nothing more, nothing less.

Lesbian is complicated and I’ll probably get into that in a different post in this series.

But anyway, things like this are what this post series was made for:  Words and symbols that mean very different things to different people.  And that being okay.

 

Posted in joy

Lindy gets head scritches.

This is after a lengthy conversation that covered topics such as:

  • Do tubes enjoy having liquids pushed through them?  Given that this is what they are designed for, they might well enjoy it.
  • Do tubes ever get bored?
  • Do the multiple available attachments help alleviate boredom?
  • Do tubes ever have a problem with being a tube, or are they free of that particular kind of angst?
  • What do tubes do for fun?
  • Do tubes enjoy having a wider variety of things put into them?

So then I just decided to give Lindy some head scritches because I’d do that for any pet, and that was a bit of a heavy conversation to spring on hir out of nowhere.

BTW to clarify:  When I say that I see objects as alive, this is not what I mean.  This, and anything with Lindy as my pet, is me playing.  Objects being alive is something much deeper and less “They’re just like humans and other animals.”  Objects are their own things, and belong to themselves.

The closest in all of this playing that I’ve gotten to the reality of how I see things is wondering about whether objects that are designed by humans and other animals (humans are far from the only animals who make tools and houses and such, after all), enjoy doing what they are designed to do.  Where ‘enjoy’ is a bad translation for a concept that doesn’t really exist in English.

I live in an apartment, for instance, that genuinely seems to enjoy doing what homes are supposed to do:  Having people live in it, making people comfortable, protecting its occupants, etc.  It both takes those things very seriously and enjoys doing them.  Which is interesting to me especially given that I know enough of the history of this building to know it was not always apartments, it was once a factory or something like that.  But I have never before lived in a home that so much wants to be a home and dedicates so much of itself to being one.

And I have lived in some very messed-up homes.  The house I grew up in had a terrible personality that seemed to encourage violence, strife, and being trapped.  Despite learned helplessness so bad that I often wouldn’t know I could run to get away from abuse, I dedicated a lot of my childhood to spending as much time outside that house as possible. And so did a lot of people.  Nobody really liked being inside it very much, which is probably one reason we got it so cheap.

Places and things do have personalities.  They’re not human personalities, they don’t work the way humans work, and anyone who uses the term ‘anthropomorphism’ and condescends at me about this risks getting virtually trout-slapped.  But ‘personality’ is again, the closest way to translate something that doesn’t translate well.  And some places have bad personalities.

The apartment I live in is the first place I’ve ever lived in that feels like a home.  Apartment, house, converted factory, doesn’t matter, this place wants to be lived in and wants to fulfill all the functions of a home for human beings.  It loves its inhabitants.  (Love, in this sense, is not an emotion.  Sorry for all the word explanations, but things like this are all very bad translations at best.)

And there are ways the tube is alive, but being a pet is part of a game I play with things sometimes.  The way I play such games may be connected in some way to my belief that everything is alive, but they are expressions of playfulness.  For lack of a better word.

I’m saying that because a lot of people when they hear I think “objects are alive” automatically think “anthropomorphism” and proceed to behave in extremely irritating and condescendng ways.  And by the way, please don’t throw the word ‘animism’1 around in these contexts with me either, especially if you’re gonna do so in a way that manages to be both racist and ableist at the same time.  Which it usually is.  Especially when you not only paint it in the most simplistic light possible, but describe it as a phase human beings go through before we really understand the world… I’ve had so many condescending explanations from so many people who have no idea what I actually mean, that it’s gotten ridiculous.

Anyway, cute tube gets head scritches!!!!  And that’s what matters right now.  Silliness is an important part of life.   TOOOOOOOOOOOOOOBS!


1 Also I don’t call myself an animist, just so you’re aware.  There are many reasons.  One is who came up with the term, why, and how it’s normally used.   Another is that whenever people tie me to an ‘ism’ it seems to come with ideological strings attached, so I’d be wary even if I didn’t think of the term as nearly always racist and often ableist.  (The term itself, not the intent of the people using the term, mind you.  This isn’t an accusation towards everyone who says it, just why I personally won’t use it on myself.  Words mean different things to different people and this is not a request for people to use words differently than they alrady do.)

Posted in Weave of Traditions

Weave of Traditions topic introduction

The tight weave of traditions that makes a comfortable hammock for some just as surely makes a noose that strangles others.

-Anneli Rufus, Party of One: The Loners’ Manifesto

Weave of Traditions will be yet another blog topic.

A tightly wovn grey fabric.
A tightly wovn grey fabric.

The point being this:

There’s a lot of people who want to standardize everything.  They want everyone to use the same words, with the same meanings, always.  They want people to avoid using the same words, for the same reasons, always.  They want each word, each symbol, each community, to have one meaning, one interpretation.

The world couldn’t work like that even if everyone wanted it to.

The world is a messy place where different words, different symbols, mean different things at different times to different people.

This is okay.  This is how things are supposed to work.

This is part of living in a diverse society, with diverse experiences, diverse cultures, diverse opinions, and that diversity can be a source of immense strength if we let it.

Anyway, I worry about the people who get left behind when the acceptable language changes.  The acceptable concepts change.  Something that was okay to say a year ago is terrible now.  Lots of people can’t keep up.

People react to old traditions that shut them out in many ways.

They create new traditions.

Those new traditions shut new people out, and the people building them can rarely see it.

This kind of problem is inevitable.

How we deal with it is not inevitable.  We can choose how to respond to these situations.

I suspect a lot of this topic will be devoted to the way I, and other people I’ve met, prefer to use language and symbols that other people might use or understand entirely differently.

But it’s a broad topic on purpose, and meant to cover a lot of ground.

One favor I ask of you is that you understand that no matter what I say on these topics, I am saying it in good faith.

Meaning — I am not just mounting a “backlash against political correctness”.  I have no interest in being condescended to by people who think repeating “But words matter” at me willl make my language use th same as their own.  Or being told that if I’d ever been hurt by the words in question, I wouldn’t use them the way I do.

Assume that if I’m talking about this I’m talking about something I’ve known, something I’ve seen, something that’s real.

Assume that if I’m talking about, say, the fact that the endless word lists you’re supposed to memorize is inaccessible to lots of cognitively disabled people, I actually mean what I’m saying.  I’m not just trying to get out of doing what you’re absolutely certain is the only right way to do things.  Cognitively disabled people have been discussing that particular problem, in public, for over a decade now.

I don’t expect anyone to have seen those discussions, but I do expect people to trust that they’ve happened.  And that I’m not just pulling this out of my ass to score points.  And that when I talk about being having people demand I say heterosexist instead of homophobic, my problems with this are something real.

Because none of this is about scoring points, for me.

Here’s what it is about:

  • Recognizing that when we build new traditions, we shut out new groups of people whether we mean to or not.
  • Recognizing that one word or symbol can have many meanings.  And that it’s okay for people to have different relationships to it in different contexts.
  • Recognizing that what is beautiful and perfect and respectful and meaningful to one person may be the exact opposite to someone else.
  • Learning to respect diversity in a much deeper way than you can by trying to make everyone say the same things, not say the same things, think the same things, etc.
  • Understanding that all of this is the way things should be, not something to correct or bludgeon into submission.

And a lot more than that.  But if I try to write about everything that I mean, I’ll never write this post, or the ones that I want to follow it.  So consider this a beginning, not a full summary or an ending.

A tightly woven grey fabrc with the following quote written over it: "The tight weave of traditions that makes a comfortable hamock for some just as surely maks a noose that strangles others." -Anneli Rufus, Party of One: The Loners' Manifesto
A tightly woven grey fabrc with the following quote written over it: “The tight weave of traditions that makes a comfortable hamock for some just as surely maks a noose that strangles others.” -Anneli Rufus, Party of One: The Loners’ Manifesto
Posted in medical, Speech

A (sorta) funny emergency speech story…

This post is part of a series of posts on the topic of speech.  Please read the first post in the series, New Blog Topic: Speech, to give you some idea of the backstory here.  99% of the time I’m completely unable to use speech as a primary mode of communication, and that is still true.  But this speech blog topic is about both my baseline level of speech these days, and an emergency speech mode that sometimes makes me fluent without any conscious control over the process. 

…well it’s funny when viewed from a certain perspective, and in hindsight mostly.  And it illustrates a serious problem of inconvenience with emergency speech.  It also happens to be the shortest period of emergency speech I’ve ever had1.

So one day I decided to go to the farmer’s market. Someone would drive me there and I’d walk home. I didn’t take a lot of mobility or communication equipment I really could’ve used.  I wasn’t expecting to need it.  Mistake.

A bunch of booths at the Burlington Farmer's Market in City Hall Park, Burlington, Vermont.
The Burlington, Vermont farmer’s market. I don’t know exactly what I was expecting. In California, farmer’s markets as I knew them were roadside stands where fresh produce was sold cheaply and mostly poor people (including the farmworkers) shopped there because it was cheaper than the grocery store. That is… so far from what a farmer’s market is around here that I found myself quite surprised by it all. I did find some amusement though — there were Anaheim sweet peppers with no spiciness to them at all, not even a tingle, labeled with a spiciness warning. And even the best hot sauce I could find wasn’t that hot. It made me realize how Californian my food tastes are.

Anyway, I tried to walk around a very long line at one of the booths, and hit a slippery patch of mud. I took one of the most spectacular falls I’ve ever taken.

I don’t know if you’ve ever seen someoone W-sit. I’m hypermobile and such a posture comes naturally to me. (It’s considered horrible for you but if your joints are loose it’s a very stabilizing sort of posture.) Normally, W-sitting looks kinda like this:

wsitting_850px_10-600x600.jpg

So just imagine that I’m lying flat on my back and my legs are kind of in that W-position except somehow they’re folded so they’re underneath my back, and you’ll get the general idea.  I’m at that point in excruciating pain.

So I yell — with total clarity and fluency and no trouble at all making myself understood, nor any pre-planning to what I was going to say — “WILL SOMEONE PLEASE HELP GET MY LEGS OUT FROM UNDER ME!?

And someone runs over and does it.

The sharpest of the pain vanishes instantly.

And then I can’t talk anymore.

And at that point there’s paramedics, and a lot of information I have to give them, and talking would be really convenient at that point.  But nope.  No fluent speech available.  Barely any non-fluent speech available.  And I’ve got several broken ribs and two sprained ankles.  (They concentrated so much on the ankles that none of us even noticed the ribs until later after I’d got home.  Fortunately(?) because I have osteoporosis, I’m used to broken ribs and knew what to do.)

It ended up okay, but this is a good example of the way that emergency speech is largely outside my control.  And how it doesn’t always have a lot of rhyme or reason in terms of convenience — it would’ve been nice if it stuck around for the paramedics, but it didn’t.  My brain has a mind of its own when it comes to the occasions it decides fluency is gonna happen.

I don’t remember exactly when this happened, other than that it was the same summer I was in the ICU, after my ICU-acquired emergency speech2 had gone away.  I also remember that they actualy discovered the many healed broken ribs, along with a stable stress fracture to my T12 vertebra, the December after this.  They’d been doing a lung x-ray and my lungs were fine but other things were clearly not.  So this would’ve been the summer of 2016, I just figured out by checking some records.

But… yeah.  Apparently my brain decides when fluency is medically necessary, and it doesn’t always agree with me on the matter…


1 Understand I haven’t had this happen that many times. But the amount of time I’ve had it stay on more or less consistently has ranged from seconds to a few months. Right now I’m in a very weird period where it’s trying to stay on longer than it ought to due to a huge amount of medical crap happening, and the speech trying to turn on even past the point it can sustain itself… it’s causing all kinds of mayhem in the process. And by mayhem I mean actually dangerous to me.

2 This speech had been longer-lived than just a sentence, and lasted my entire ICU stay and then a little after I got out of the hospital. It began sometime in between when I had a long series of seizures, and when I stopped breathing. The existence of speech was actually one of the factors that caused people to call 911.

Posted in joy, medical

Meet Linden, my pet feeding tube ^_^

So um.  Sie doesn’t have a name (well sie does by the end of this post, I decided to name hir), and I’m not sure sie’s gonna have a name.  I haven’t named tubes since Enid — long story.

But I swear with the way they move, these little MIC-KEY buttons can look like they’re alive.

So meet my tube. Sie’s a 14 French MIC-KEY button jejunostomy tube, 3.5 cm stoma length.  I think sie wants to say hi here:

I think sie’s adorable.

And yes, sie moves.  Mostly peristalsis, the natural movement of the intestines, but it makes it look like sie has a little head that peeks around.  Most of the time when sie’s in hir dressing sie moves a little less, which is good (you don’t want a J-tube spinning, sie has a long tail inside of me).

Sie’s modular.  Which means that the part you can see is just the part that attachments can clip onto.  There are different extension kits for different types of syringes and feeding attachments and situations, and all of them are pretty cheaply replaced.  Which means if one of your extension kits breaks, you don’t have to replace the entire tube inside you.  You just replace the external extension.  Usually when I’ve had MIC-KEY button J-tubes they have needed internal replacing only every 6 months or less, and in my case we were usually just being cautious and could’ve gone longer.  For some people they last years.

Because there’s not a big giant dangling thing coming out of you, low-profile tubes like MIC-KEY buttons are a lot safer.  They don’t catch on things and yank out very often.  They don’t need to be taped down to prevent movement.  And the ones that do need to be taped down, taping doesn’t really prevent all movement, so they move more and that can put wear and tear on your stoma.  They’re also really good for young children because children are less likely to see a giant dangling thing and play with it and yank it out by accident.

Here are some of my tube’s extensions:

An ENfit syringe putting coffee into a MIC-KEY button J-tube.
An ENfit syringe putting coffee into a MIC-KEY button J-tube.

This one goes to an ENfit connector.  ENfit connectors were designed for everything from tube feeding attachments to syringes, to make it so that it’s impossible to confuse a feeding tube with an IV, a mistake that can be fatal.  So I like the idea of ENfit, although it was messed up pretty badly when they tried to make it universal for all existing feeding tubes and it wasn’t, and neither was their alternate solution.

A dual ENfit extension on a MIC-KEY button J-tube, with a tube feed attached through a purple connector.
A dual ENfit extension on a MIC-KEY button J-tube, with a tube feed attached through a purple connector to one side of the connector.
A dual ENfit extension on a MIC-KEY button J-tube, with a tube feed attached through a purple connector, and a feeding/medication syringe attached to the other side.
A dual ENfit extension on a MIC-KEY button J-tube, with a tube feed attached through a purple connector, and a feeding/medication syringe attached to the other side.

This one goes to an ENfit connector but allows two connections.  This means you could have one part connected to your feeding pump, and at the exact same time be putting meds in the other part with a syringe, without having to unplug anything.

The cath tip syringe attachment for the MIC-KEY button J-tube.
The cath tip syringe attachment for the MIC-KEY button J-tube.

This one allows a normal 60 mL cath-tip syringe to put things into your tube.

Photo on 8-19-18 at 10.03 PM
A two-port tube extension, one for a cath tip one for smaller medicaion syringes, for a MIC-KEY button J-tube. There’s a 20 mL medication syringe attached to the smaller port, with hydrocortisone in it.

This one allows two sizes of syringe — cath-tip and a smaller kind that are often used for medications.

And there are others in various shapes and sizes, those are just the four I use the most often.

Here is a video showing how easy it is to put in the extensions.

My old tube was not modular.  It was a 12-French MIC* J-tube, and it is one of my least favorite tubes.  But it is the only one they will implant surgically, then you have to wait six weeks minimum before you can switch to the tube you want.

A picture of my old feeding tube (the one that finally got swapped out to a decent tube on my birthday), which was not low-profile or modular or just about anything else useful other than just being a J-tube. My skin looks horrible in this photor for reasons, it's nowhere near that bad now.
A picture of my old feeding tube (the one that finally got swapped out to a decent tube on my birthday), which was not low-profile or modular or just about anything else useful other than just being a J-tube. My skin looks horrible in this photor for reasons, it’s nowhere near that bad now.

As you can see in the photo above, the tube is all one piece.  If one part breaks or wears out or stretches beyond usability or gets clogged, you have to replace the entire thing. It’s also a constant safety hazard because no matter how well you tape it down (and taping it down creates its own safety hazards that are different) it’s gonna still be able to move and get caugh on things.

So my new tube… maybe I should give hir a name, I’m just not sure what name to give hir.  I guess I’ll call hir Linden for now, and see where it goes.  I’m just tired of not having a name.  So Linden, Lindy for short.

So here are the official photos of the old MIC tube i had, and the new MIC-KEY tube.  It’s night and day, even though they serve the same function.  The following is a Halyard 12 French MIC* Jejunal feeding tube.  And really sucks as feeding tubes go.

This is the tube that gets surgically implanted by default. It's not a very good tube, it's flimsy, it's not modular, and I was infinitely grateful to be able to get it replaced on my birthday this year. I've had long experience with this kind of tube and most of it bad. It's a Halyard MIC J-tube, 12 French. Most of what's in the picture goes inside you so you don't see it, you just see the floppy part hanging out the top.
This is the tube that gets surgically implanted by default. It’s not a very good tube, it’s flimsy, it’s not modular, and I was infinitely grateful to be able to get it replaced on my birthday this year. I’ve had long experience with this kind of tube and most of it bad. It’s a Halyard MIC J-tube, 12 French. Most of what’s in the picture goes inside you so you don’t see it, you just see the floppy part hanging out the top.

The following, on the other hand, is the kind of tube Linden is, called a low-profile feeding tube or a MIC-KEY button.  This kind of tube is modular and generally wonderful.  Again, the long tail you see is mostly inside of me.  The tail is part of what makes J-tubes (intestinal feeding tubes) different from G-tubes (stomach feeding tubes).

Screen Shot 2018-08-28 at 10.30.20 PM
A Halyard MIC-KEY button jejunal tube shown as the tube part on the right (most of that tail is inside of you so you only see the part above the balloon generally) and then some tube extensions (which help you put things into the tube) and otherequipment on the left. A MIC-KEY button is modular, so the part that is in your body is an entirely separate piece from the part you use to put things into your body. The internal part takes a procedure to replace (you could do it at home but it’s not recommended), but it rarely needs replacing. When the external parts wear out, you can replace them quickly and cheaply without requiring any procedures or even contact with medical people. The lack of dangling parts contributes to how long-lived these tubes tend to be.

So meet Linden again:

A MIC-KEY button J-tube on a large somewhat scarred-up belly with ostomy bag behind it.
Say hi to Linden again!
Linden with hir makeshift paper towel dressing.
Linden with hir makeshift paper towel dressing.

And I hope you find hir as cute as I do, even though a lot of people would find it weird to call a feeding tube cute.  I kind of wish I could give hir decorations, but there’s no way that would either be safe or stay put, so no point.  But I can name hir Linden and show people the way sie moves.  ^_^

 

 

 

Posted in Death & Mortality Series, quotes

Feminists and disability activists and Deathlings, oh my.

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.

Bolded for my own emphasis.

“She draws on an old and familiar series of clichés: disability as dependence, disability as innate limitation, disability as political voicelessness. She comes at disability through feminism and commits the traditional feminist errors about disability, rather than reaching for the vitality that a fully realized interaction between feminists and those concerned with disability can offer.”

-Cal Montgomery, Critic of the Dawn

How I feel about most Deathlings whenever they even hint at discussing disability or at trusting and using systems and practices that tend to kill us a lot.  Which is disturbingly often.  Yet…

Spoiler: I’m a closet Deathling (well I guess not closet anymore), and an actual member of the Order of the Good Death.  But one reaching for connections between death acceptance and disability rights that compromise absolutely nothing of the safety of disabled people, and that come at things from what to many people are probably wholly unexpected angles.  Stay tuned for more on that, I’ve been writing a post ever since someone asked me about it.  It’s complicated and hard to write the bullet points.

And that thing about what a fully realized interaction could offer… I only wish, with Deathlings and disability rights.  I haven’t even seen it tried yet.  I’m trying singlehandedly a little with parts of this mortality series, I’m sure others are out there doing the same mostly in isolation.  I think the irrational fear of death and the irrational fear of disability are deeply intertwined and equally destructive, among many other angles I wish people would try and look at things from for at least a moment.  And I’d love to hear discussions of The Good Death that involve an extreme acceptance of disability to the very end instead of using death to try and get around disability because you fear disability so much.  Because nobody ever talks about that choice, and fear of loss of control over your body and mind and many other things disability represents to people feels so obviously connected to fear of death and decay and the like, yet they usually aren’t making that connection…

And there’s always one more quote in “Critic of the Dawn” that requires a tenth, eleventh, twelfth, fiftieth look… I was one of the test-readers for that piece (a task I was wholly inadequate to, especially at that age) and I still find new things in it every time I read it.

And yes, I believe it’s possible to be both a member of The Order of the Good Death and Not Dead Yet, if you wanted to be.  And I wish more people were informed by the best of both mindsets.  (I know there’s problems with NDY but I’m using them more as a placeholder for a mindset, than a recommendation of membership.)  And I’m gonna be out there trying, always.  I know the dangers disabled people face firsthand, so I’m never gonna forget where deadly forms of ableism are showing up even if the people doing them can’t see them.

And I also think facing one’s own mortality and the place of death in the scheme of things is an incredibly important thing to be doing, disabled or not.  Hence being an avid but mostly closet Deathling.  (Mostly closet because I don’t know how to explain the drastic misgivings of a disabled person and it’s exhausting to try.)

In the meantime my memento mori / memento vivere (reminder that you will die / reminder to live, loosely translated) ring.  I got it recently as a reminder of everything I’ve been through lately, and the closeness of Death at all times, and what that means for the living.

A big but elegant costume jewelry type ring showing a cameo death's head with an elaborate hairdo and a frilly border. Next to a handmade ring that's silver with a cluster of seven turquoises.
A big but elegant costume jewelry type ring showing a cameo death’s head with an elaborate hairdo and a frilly border. Next to a handmade ring that’s silver with a cluster of seven turquoises. The death’s head is meant as a reminder of both mortality and embracing life while it’s still around to embrace. (Memento mori / memento vivere.)
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, HCBS, Self-advocacy

Let’s get one thing straight.

“I tell my story, not because it is unique, but because it is not.” -Malala Yousafzai

“I tell my story, not because it is unique, but because it is not.” -Malala Yousafzai

“I tell my story, not because it is unique, but because it is not.” -Malala Yousafzai

So when a social worker told me I had to understand that my developmental disability service agency is being nice to me, I saw red.  Especially when she explained to me oh-so-helpfully that many clients are getting nothing, therefore they are being nice to me by giving me anything, and I should be grateful and appreciative of this fact.  There was, of course, the implied threat that everything could be taken away from me, but that’s been hanging over my head for awhile now.  I fully expect them to try at some point.  Possibly soon.  Possibly now.

But anyway.

So.

To be really, really fucking clear.

There is nothing that I am demanding for myself that I don’t think every other client of the Howard Center should have.

The fact that some people there have nothing right now is obscene.

I am not causing them to have nothing by demanding what is both my right and their right.

Hell, I’m not demanding as much as I deserve.  I’m not even demanding all of my actual rights as a client of the developmental disability service system and a Medicaid waiver recipient.

Right now, I’m just demanding what i need to survive and live in my own home.

Survival is a human right.  Living in my own home is a human right.  As a client of the developmental disability service system, these are things that all 700-odd people under the Home and Community Based Services system in this agency are entitled to.  Every single one of us is entitled to the supports we need to survive and live in our own homes.  The fact that the agency doesn’t do things this way is an ongoing violation of those rights, not a thing that should ever be considered an acceptable state of affairs.

If I ask for these rights for myself, I am asking for them for every single other client of the agency as well.  I am not asking for them so they can take them away from someone else, and it’s fucking insulting, not to mention dangerous, to every client involved here to even imply that.  And it belittles — deliberately, in many cases — the work of the self-advocacy movement which has worked very hard to secure these rights for every single one of us.  I am here because other people demanded these rights for themselves, and they became known as rights we all deserved, and then they became available to me as well.  In asking for what I need, I am merely doing the exact same thing.

So don’t ever tell me that in asking for my rights i’m somehow taking away from someone else’s.

I’m able to live in my own home because Lois Curtis and Elaine Wilson demanded the right to live in their own homes.

When I demand that this right be upheld for myself, I am demanding that this right be upheld for every single other person with developmntal disabiliites and beyond.

I refuse to play their divide-and-conquer games.

I refuse to say that because other people are getting nothing, I should be happy I’m getting anything at all.

If I don’t get what I need to survive, I’m not getting enough.  If other people are getting nothing, they’re not getting enough.

I might not even be involved in this fight if it weren’t for knowing how many other people this is happening to.

So don’t ever get the idea in your head that all I care about is what I get.  I want to survive and live in my own home without being endangered by the very system that is entrusted with assisting me to live in my own home.  These are not excessive demands.  These are bare minimum demands.

They are playing a lot of head games and a lot of word games.

But I can still see what’s happening.

And I will continue fighting because I am not unique, my needs are not special, and an agency that exists to meet those needs, meeting those needs, is not a fucking favor.  Every single one of us deserves to survive and live in our own home, these things are basic human rights (and even legally considered them at this point, not that this should be the measurement of whether something is or not), and failing to meet them on such a large scale is evil.

Also, less than I need to survive safely is still less than I need to survive safely.  The fact that I could get even less doesn’t change the fact that I need more than this.  And that until recently, I was getting more than this without increasing my hours or changing anything.  (In fact, what they want me to be doing would require an increase in hours probably, so they can’t even truthfully argue this is about resources.  The proposed changes in my services would, even if possible, require far more time and effort on the part of staff than what was going on already.)

And no, I am not unique, that’s part of why all this frigging matters so much.  If I were the only person this was happening to, it would be a problem, but not the kind and scale of problem that is actually happening here.