Posted in Developmental disability, disability rights, Self-advocacy

When I suddenly can’t do something I could always do, SOMETHING’S WRONG.

Right now my baseline walking ability is pretty damn good for someone with spinal stress fractures. On an average day I can take my walker out in the hallway and do seven laps in a row. I get sore but I could usually push on further if I had to. I am not even necessarily out of breath after all that.

One day recently I did two laps with extreme difficulty and then my legs got wobbly and almost gave out. It felt similar to a congenital myasthenic syndrome sort of thing, muscular and not back related. I’d also been feeling weird all over my body, and getting disoriented and having unusual emotional reactions.

I did what I’ve been taught to do. I reported all this to the nearest medical professional. I don’t remember who she was, not that it matters because the point of this post isn’t to put her on the spot. But her reaction was very typical of medical professionals in general when dealing with me. Some of it was a general attitude people have towards patients, but watching how others are treated, I get more of it than other patients who don’t have developmental disabilities. So there’s extra biases at work for me.

Anyway, when confronted with this situation you’d expect a medical professional to ask if I was okay, or ask further questions to figure out how I was feeling, or try to find out why I suddenly couldn’t do something that was coming so easily most of the time these days.

Instead I got, loosely paraphrased, “That’s what happens when you stay in bed all day.” Lest anyone think I’m some kind of hospital couch potato, I’d been in bed that day because I felt sick, not because I’d been making a long habit of it.

Let me put this plainly: This is a dangerous level of rudeness. It turned out I had low potassium. This was one of the first signs. It is almost always true that if I have sudden extreme difficulty doing something I could do easily just one day before, something is going wrong with my body. It is wrong both factually and morally to, within a matter of seconds, jump to the conclusion that I just need to work harder or that I’ve done something to cause the problem.

It’s also mean and puts me in danger. It’s dangerous because it makes people less likely to look for whatever is really causing the problem, which is often something that could turn serious untreated. It’s also dangerous because it makes me less likely to ask for help or inform anyone next time. And it’s mean because it treats me different than you’d treat a friend or expect to be treated yourself if you suddenly had trouble doing something you can always do.

There’s very little compassion in the response I got, but it’s pretty standard towards DD people with health problems. It’s one reason that rather than slacking, we tend overall towards pushing ourselves until we drop. Many end up in the hospital. Many die. Often from conditions that are treatable if caught early. That’s one reason I take these dismissive responses so seriously. It might not seem like a lot but the overall consequences can be extreme.

So please, if I say I’m having trouble, treat me like I’m having trouble and try to find out why. Don’t treat me like I must’ve done something to cause it and need to be pushed to work harder. And as always, I’m saying this on behalf of whole classes of people who get treated this way, not just myself. It applies to all of us. But I’m asking for myself, too. I don’t deserve to be treated like this either.

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Posted in Self-advocacy

Once I’ve identified something I won’t do, stop trying to get me to do it.

I got into the hospital in part by doing what everyone else told me to do. I got stress fractures in my spine. They got worse. I got all of this by doing physical work other people thought was important to proving my motivation or demonstrating independence. They took advantage of my pride in my work and other things to make me easier to persuade. But the end result was I broke my back twice.

I made a promise to myself I wouldn’t do that again. I wouldn’t listen to other people’s ideas of what I should do if it conflicted with what my body could tolerate. It doesn’t matter who they are or what their motivations.

If you can’t tell by now that I have a ton of motivation, nothing I say or do will convince you.

I don’t have to explain. Because I can’t always explain. And because most of the time people are looking less for explanations and more for things to argue with. Again if you don’t believe me by now that I know my limits, nothing I do will convince you.

Also it’s pretty condescending for all these other people to decide for me what I ought to be doing. There’s plenty I want to learn. So far, I’ve had to fight to get taught any of it. But when others decide I need to learn something, I’d better. This shows no respect for my choices and my body.

I’ve been living in this body for a long time. I have:

  • Severe osteoporosis
  • Stress fractures of vertebrae
  • Healed hip stress fracture
  • Congenital myasthenic syndrome
  • Autistic catatonia
  • Severe adrenal insufficiency
  • Gastroparesis
  • Feeding tubes
  • Many other things

It’s difficult to understand these things and more put together at the best of times. I may not be a doctor or nurse but I know when something is taxing too many abilities, when something hurts, when something seems wrong or dangerous. I’ve learned most of it the hard way. I have an extreme tendency towards overdoing things and to push me harder in that direction can put my health and life in danger. Yes, even if what you’re asking me to do feels minor. Little things add up, and what looks little to you may be huge to me for reasons you’ve never even considered.

If everything I’ve said and done doesn’t convince you I am motivated and know my body, nothing will. I have nothing more to prove. I’m not going to do something just because someone else has decided I ought to. It doesn’t matter who. It doesn’t matter if they have good motivations. Enough is enough. It’s disrespectful and dangerous to continue to tell me what I ought to do in order to fit your definition of independent or ready to go home or willing to learn.

I’m done. You either take me as I am, or you don’t. You either trust my ability as a fellow human being to make my own decisions, or you don’t. You either respect me and my decisions, or you don’t. If everything I’ve done by now doesn’t convince you, nothing I say or do will. So let me learn at my own pace the skills I have decided I need, listen to me rather than trying to find new ways to persuade me why I ought to do as you want, and trust that I have valid reasons for my decisions even if they aren’t the same decisions you would make. Don’t make me tell you this conversation is over, because I will if I have to.

Listening to everyone else over the warnings of my own body is what got me into the hospital. I broke two vertebrae and continued to do physical labor with an unhealed fracture. I went out and did errands with a bad case of pneumonia until I almost passed out. I let people treat me like they always knew better. I ain’t doin’ that again.

Posted in Developmental disability, disability rights, Self-advocacy

I need time. This is about accessibility.

Momo walking in front of a bunch of clocks with a tortoise.
Momo walking in front of a bunch of clocks with a tortoise.

I need time.

It takes me time to understand things.

It takes me time to make words.

It takes me time to respond to things.

To make medical decisions, I need the time to have a two way conversation with the doctor.

I need time.

Nothing changes this.

Shortcuts and attempts to speed it up slow it down more.

I literally walk faster than I run.

My brain is the same way kind of.

I get there. But I need the time. If it seems fast it’s because I’ve done it a million times already, many of them slowly.

Many times people assume based on the end product.

So if I have a complex thought they think it’s a fast thought.

I get to complex thoughts slowly usually.

Or they look complex. But they’re actually simple. But they translate as complex when they combine with language. Or people think lots of words means complicated. It doesn’t. It can mean I had trouble finding the right ones.

At any rate if people think they see complicated thoughts they often think that means fast thoughts. Or they think if I type or move fast I think and understand fast. Or they think fast in one context means fast in another.

None of those things are true.

I do best with things outside of what most people think like.

To get usual types of information and respond and have it be meaningful I need time. Lots of time. I get there but it takes a lot of extra time whether anyone sees that time or not.

To make it look fast I have to take dangerous shortcuts that harm me or confuse me.

I get confused easily.

I am good at not showing it. I suspect anyway. Sometimes.

But I get confused a lot. And it takes me time.

All of this is disability related.

I have developmental disabilities. I have cognitive disabilities. I have physical disabilities. All of these things are part of it in their own ways.

I usually tell people if you think of me as having a brain injury I make more sense. It’s the easiest analogy most people are likely to be familiar with.

But really as labels go I can identify a lot cognitively with people with dementia, stroke, brain injury, intellectual disability, epilepsy, autism, learning disabilities, developmental disabilities, and lots of other things. Some of which are labels I’ve received or qualify for and some aren’t, but there’s cousinhood going on big time even when I don’t. Cognitive kinship.

It’s the way thinking works and the obstacles we face in the outside world that determine our similarities and differences, far more than what diagnosis someone decided to give us.

That’s one reason I don’t like communities based in a single diagnostic label. I’d rather seek out familiar people wherever they can be found. And there’s something degrading about being told that it’s the labels the medical profession decided to give us that determines whether we find that kinship. That’s one reason the developmental disability self-advocacy community insists on labels as less important than in some other disability communities. We’ve found a kinship based on common experiences and common values and desires among other things. And we prefer that to being divided up by other people’s ideas of categories. And we’ve had our categories used to erase our humanity. We have lots of reasons.

Most people with developmental disabilities have cognitive disabilities of some kind. And many of us, for many reasons, take time to figure things out, time to respond, time.

This is not just a personal request. It’s about accessibility. Accessibility isn’t just about what people want. In many places, including here in the USA, it’s the law.

Accessibility is a disability rights idea.

It has to do with the fact that societies plan for some people to be there, take for granted that some people will be there, build everything physical and social around the strengths and weaknesses of that kind of person. And then other people aren’t planned for or taken for granted and there’s all these obstacles to our participation in society. We are the disabled people.

Accessibility is about making it possible for everyone to participate by removing those obstacles and barriers that shouldn’t be there, and by building things in ways that make it as easy as possible for us to be there and participate and be part of things.

That isn’t the world’s best description but I’m trying. Most people if they’ve heard of accessibility they’ve heard if things like curb cuts and wheelchair ramps and elevators. Things that apply to physically disabled wheelchair users mostly.

Cognitive accessibility is different. Most people haven’t heard of it. Many physically disabled people who are big on physical accessibility don’t even believe in it. It’s part of ableist bigotry against cognitively disabled people.

But it’s huge. Just like physical access it can be life and death.

And for many cognitively disabled people, TIME IS ONE OF OUR BIGGEST ACCESSIBILITY ISSUES.

You need to give me time to think. Time to understand. Time to respond. Time to have a back and forth conversation. Time to put things together. TIME.

And the time needs to be without pressure. Without judging me for needing more time. Without making me explain why I need time. Without treating me as demanding. Without acting like your time is so utterly valuable that to give me even five seconds is a giant favor. Without acting like cognitive accessibility is a favor at all. Without all kinds of bizarre conditions in order to qualify as worthy of your time. Without treating me like I’m asking for special treatment. Without using the fact you gave me extra time to demand other things of me later.

None of those things are how real accessibility works. Because all of those things treat me at best like I’m only welcome under certain conditions. Like I’m only welcome because you’ve decided you want to be nice to me today. That’s not welcome. And it’s not accessibility. A wheelchair ramp that disappears and turns into a staircase whenever a wheelchair user feels grouchy isn’t access either.

Time isn’t always easy to come by. But we can’t just make our brains run the standard way. We need more time than usual. Or we need the time we have used different than usual. Or something.

Not getting enough time is such a common obstacle to access for such a huge and diverse group of people. Yet time is rarely seen as an access barrier. And when people bother to give us the time we need, it’s treated like a favor. Or like something that isn’t actually necessary. Something that wouldn’t be a problem to take away. And it’s our problem if we can’t keep up.

I’m dealing with huge timing issues in the hospital. It affects everything from comprehension to communication. It’s interfering with some of the most basic parts of my medical care. I’m getting exhausted, scared, and discouraged trying to cram my abilities into a speed that’s impossible for me. And half the time I’m not even getting the time to explain what I need when it comes to time: people force the conversations so fast it distorts communication at best and they can’t even tell it’s happening.

I’m not the only one. I had a roommate who communicated complex thoughts when we were alone but couldn’t get three words out around family and staff before they’d all decide what she was thinking. That’s a lot of things including lack of respect, but part of giving her respect was giving her time.

Meanwhile I’m always getting lectured on how I don’t respect people’s time because I make timing mistakes directly related to being disabled. >_< From people who rarely give me time enough to understand or respond right to anything.

People turn my access requests into weapons against me. Requests for time become ways to paint me as demanding or entitled. If I’m granted time, people will later explode at me if I still don’t understand.

“I GAVE YOU A WHOLE HOUR OF MY TIME AND I’M NOT ANSWERING ANY MORE QUESTIONS!” A doctor who was paid for an hour of consultation about choices between different styles of feeding tube. Later he happened to be assigned to me for a totally unrelated procedure and apparently the “favor” of his paid time meant he couldn’t answer a simple routine question any patient would ask. All I needed to know was whether I was getting Propofol during the procedure. Instead he wouldn’t even listen long enough to find out what I was asking. And I got shouted at just before a stressful procedure taking place in a room that gives me PTSD flashbacks every time I see it. I ended up with somewhat dangerous cortisol issues all because he happened to be the same doctor paid to spend an hour with me once.

People go out of their way to tell me what a hassle it is to give me any of their time at all. Even when they’re paid good money for it. The same people go out of their way to insist I don’t value their time enough. Often based on a false equality. But also based on rules I can never predict or follow because they require cognitive skills I don’t have.

This leaves me in the permanent belief that my time has no value at all. But that everyone else’s time is worth something close to infinity.

Mind you, until recently, using words or ideas like “time being worth something” would never have occurred to me. I’m still not sure it sits right in my head. And I’m not sure if it not sitting right is for a good reason or not. It just isn’t a way I think of time. Not the way they seem to mean it. Of course I barely understand time at all. But this way still confuses me.

But I do understand the concept of everyone always has to take time for me. And that this is a huge waste if their time. Because I’ve heard that my entire life.

I don’t actually buy the idea that my trouble processing time makes me a bad person who doesn’t understand the huge value of everyone else’s time. Or a person who needs to be condescendingly taught about such things. Because that just doesn’t pass any of my mental smell tests. But the way I’ve been treated and what I’ve been told leads me to feel that way.

So one barrier to access for many of us is time. But an additional one is the belief that we barely deserve the time we get, don’t deserve more, and are just taking away from everyone else’s much more important time. These add together until we get less time and lower quality time (like when the person spends the whole time letting you know you inconvenienced them), when we need more.

I need time.

But this is more than a personal need. It’s an accessibility issue. It changes how I’m able to participate in society. Right now it’s messing up my medical care. It’s a huge important deal, not an afterthought. And I’ve rarely met anyone with developmental or cognitive disabilities where time wasn’t an obstacle to access.

So giving us time, when it’s possible, isn’t a favor. It’s an access issue. And be real careful declaring it impossible, because there’s usually a solution. A lot of the time when people say it’s impossible they really mean it’s not important to them or they’ve always planned their time with a lack of time for us just built in. I only mentioned possible because there’s some people with cognitive disabilities whose own time issues make it hard for us to do this for someone no matter how hard we try. But for most people that isn’t a problem. And there are often solutions when time is limited. You just have to start from the assumption this is both important and possible.

Time is certainly important to those of us who need more of it. And it’s an accessibility issue just as important as wheelchair ramps, curb cuts, or Braille. It seems like such a little thing but nobody wants to give it.

Posted in medical, Self-advocacy

I am Neville Longbottom.

His friends taught him to stand up for himself.

They did something he thought was wrong.

He stood up to them.

They belittled him.

He said they told him to stand up to people.

They said “Yes, but we didn’t mean stand up to us.”

Everyone is telling me to listen to my body.

Yesterday my body told me it was trashed and barely hanging on.

Yesterday my body told me it was inches away from the whole medical house of cards falling in.

Yesterday my body told me that this was a thin line, not a slow slope, and that if things went really really bad, it’d happen fast.

So basically by the time anyone else saw it, it’d be way past time to have done something about it days ago.

I’ve been weak.

I’ve been dizzy.

I’ve been in excruciating pain.

My back’s been doing warning-signal type things.

I’ve had alarm bells going off.

I’ve had difficulty breathing that doesn’t even require doing anything, I just get weak and breathing feels like it takes a lot of work. (This is always a bad thing and often a sign my myasthenia or adrenal insufficiency or both are acting up, possibly combined or as a result of other things.)

THINGS ARE WRONG.

Oh and by the way STRESS IS BAD FOR ME.

Physical and emotional stress both make adrenal insufficiency worse and I’m on a lower dose of my meds than usual and not used to this dose yet (so not used to gauging how much stress I can take).

And I was having random stress responses that were… suspicious. (Suspicious as signs of something actually wrong because of the ways they don’t act. I have no good way of describing this in words.)

And I started getting the shits.

And I couldn’t bolus feed even close to the normal amount I can get away with, even though no amount is really good. So I couldn’t use that to replace the food I’m not getting.

And.

And.

And.

And.

And.

I could go on, if I had words, and brain, and all that. (BTW this means this story won’t be told as well or as thoroughly as it could be or ought to be.)

A lot is going wrong, and my body is sending pretty clear signals.

And I’m learning, as always, which signals to listen to.

So I knew something was wrong and I knew there were things I just couldn’t do.

And sometimes those things change, minute to minute, let alone any other thing.

Anyway.

I was having a shitty day, and then I learned that Howard wouldn’t let me eat, and the stress really set in. I tried every stress reduction technique I knew, and only some helped.

And mind you — everyone else seemed to be having at least a shitty day if not shittier.

But anyway.

By night.

Things happened.

I don’t want to describe the whole situation, doesn’t matter for this.

I was exhausted.

Two days ago I was doing laps around the ward, more than ever before.

Yesterday, for the first time, I did less than I’d done the day before. In fact i did none.

I spent a lot of time, on and off, just lying there really weak not moving.

They’d given me a hang-bag of potassium in the morning but assured me at some point that if it was really really bad my doctors would come by and say something. Everyone keeps saying my doctors not coming by a lot means good things.

This morning I found this result which is what made the potassium bag appear yesterday:

Electrolytes test result for May 30: Sodium with yellow highlight and one down arrow: 128 (should be 136-145), Potassium with red highlight and two down arrows 2.9 (should be 3.5-5.0), Chloride with yellow highlight and one down arrow: 77 (should be 96-110), CO2 with yellow highlight and one up arrow 37 (should be 22-32).

But I didn’t know that then. Nobody had told me there was anything too alarming about my potassium results. They’d been trying J-tube supplements for a little bit but those haven’t always worked in the past. Apparently for whatever reason the IV potassium through my port isn’t enough either because this is this morning’s labs:

Electrolytes test result for May 31: Sodium with yellow highlight and one down arrow: 130 (should be 136-145), Potassium with red highlight and two down arrows 1.9 (should be 3.5-5.0), Chloride: 96 (should be 96-110), CO2: 27 (should be 22-32).

So some other things are better, but potassium is worse.

Potassium has been slowly creeping down since before it went low, let alone critical. Everyone’s been telling me not to pay attention to the slow creep. At home, I would see a slow creep and turn it around with a slight amount of coconut water — not too much, not too little. I can’t do that here. I don’t have that level of control. I don’t know whether coconut water would’ve prevented this before it got low this time. But it very well could. And everyone was busy “not worrying about it”. (What I do isn’t worrying about it, it’s preventing something before it happens. There’s a difference.)

But at any rate, potassium going critical can certainly put a dent in my body’s ability to do stuff, let alone without getting enough food (which itself is probably contributing to the potassium).

Let alone all the other crap going on.

So I had lots of good reason for feeling like crap.

Anyway.

So.

Last night.

With all that going on.

And knowing the food situation, and seeming to understand it.

And having seen my leaky J-tube all the whole time I’ve been here.

And many other things.

My J-tube leaks and a bunch of other things. Leaks, soaks through, burns.

I need to go to the bathroom.

My pain levels go haywire.

All these things at once.

I call the nurse.

I get…

Incredulous laughter at the idea I need a walker to get to the bathroom, along with something like “You’re not really gonna use that walker, are you?”

No help on the way to the bathroom.

Come back, lie down, need to get plugged back into feeding bag.

Get plugged into feeding bag.

Then she says something like “I’m putting you to work.”

She’s gesturing at a bunch of drain sponges.

I try to treat it as a joke.

“You’re not really saying you’re gonna make me change my own dressing?”

Then it becomes an argument.

And she gets really tense about it.

And it’s like, telling me I’ll never be able to manage at home if I never manage to do this, and also that there’s no such thing as being able to do something sometimes and not others, and lots of other things.

And then demanding explanations.

She didn’t want an explanation.

She would never believe any explanation I gave.

So I told her so.

I told her, “You guys are the ones who told me to listen to my body no matter what anyone says. I like you but that means you too. And I don’t owe you any explanation, you wouldn’t believe me even if I could explain it perfectly, which I fucking well can’t right now.” Only it may’ve had the word ‘fucking’ in there more times than that.

I’m not taking this anymore.

If I say I can’t do something, it’s for a reason.

And we actually went through a long conversation I didn’t recount, in which she rudely dismissed anything I said no matter how verifiably real it was.

Shit like when I said “I’m trying to conserve my energy” and she blew me off. So when I finally said “Remember I was having trouble breathing earlier today” to try to impress upon her how serious it was for me to waste energy, she said something like “Oh don’t even start with that shit.”

So any amount of “fucking”s were well-deserved by that point.

Lots of things happened. Our interactions were better the rest of the night.

But that was wrong.

And.

I’ve been bending over backwards to accommodate everything about this place and being treated like I’m the one doing something wrong.

I’ve been pushing myself — not too hard, but pushing myself — more than adequately by everyone’s description. And when one day — one day — I could do less than expected, the immediate response was an attempt to manipulate me into doing more “for my own good” and then treating me like shit for resisting. The same people who have been telling me all along to listen to my body. I listened, they got mad at me for it.

I am Neville Longbottom.

I want to keep being Neville Longbottom. He turned out all right.

And I need to, if I want to survive a system that tells me my body is wrong when any time I get a clear signal of “Something’s badly wrong,” I turn out to be right. And that the answer to a situation where I’m overworked to the breaking point is always do more.

“Listen to your body, dear, you know best,” sounds well and good until I do it when the person wants me to be able to do more. Then all hell breaks loose. At this point, I’m gonna keep saying “I can’t means I can’t, whether or not I can explain exactly how it works, and I’m not gonna wait until I can explain it to you to refuse to do something I know is bad for me.”

And I’m worn out, worn out. I don’t know what I’ll do once I see a doctor (provided one comes in), because I’m putting all my spare energy into getting to that point), because I’ve needed all the energy I’ve conserved and I feel like I’m burning reserves I don’t have just to get me through until whenever the doctor comes. Which is unpredictable as fuck and nobody gives you clear answers.

I’m hungry.

And I’m Neville.

Posted in Self-advocacy

Explanations.

Believe it or not, this entire post was written before tonight’s events, where I stood up to someone demanding an explanation like this, for the first time. I have only finished a sentence that wasn’t finished, and added this paragraph, otherwise the post is unchanged. So it applies to today, but wasn’t written today or even with the expectation today would happen, so it’s weird. I might nor might not have the energy to write about today, I don’t know.

My memory is both shit and not shit.

Shit: I can’t bring up needed memories on demand.

Not shit: When memories happen for their own reasons, they are more accurate than usual.

So I say “My memory is shit” and “My memory is good” and both are true.

I can forget my back is broken. Or how to say exactly how it’s broken. (Once is a stable stress fracture which means kind of healed and kind of not in different ways, sometimes it’s called healed but it means something different than a normal healed broken bone. Once is a stress fracture that is not healed. First is T11. Second is T7, I think, maybe T8.) It’s easy to say “It’s broken twice” and that’s fine for a layperson but to a non-layperson that’s not specific enough. But I can’t always do specific.

Anyway. Recall is a problem.

Words are a problem in ways too complicated to explain right now.

In fact what I do want to explain in this post is why demanding explanations is so awful.

Today a physical therapist said a lot of things to me that were a very oversimplified view of things leading to a conclusion that was dangerous to me.

I told her I can’t possibly do a certain thing right now.

She wanted to know why not.

I tried over and over to explain and I kept stumbling over stuff.

It would have been really good if she’d tried to help me clarify what I meant.

Instead she treated me like I didn’t know what I meant, unless I explained.

So I kept trying to explain and failing.

Hours later, like over 6 hours later, I started beginning to figure out parts of things I could’ve said.

They were “obvious” things.

Things anyone should’ve remembered. Except I can’t.

I couldn’t.

I tried to contact my cognitive interpreter, saying she could explain.

She said she didn’t need to speak to my cognitive interpreter, and she and someone else talked to me in such a way where I couldn’t shove a phone call in edgewise.

And so no explanation happened.

What pisses me off about this entire situation is one I keep running into lately. It’s not any specific person, it’s lots of people.

It’s the expectation that if you can’t explain why you have trouble doing something, you have no right to assert you can’t do it.

And she is the person who told me to begin with.

She is the one who told me that I am going to have to be the person who figures out what I can and can’t do, and where to draw the line, and that only I can feel that in my own body.

But apparently that only counts sometimes.

And I don’t mind that she asked, I just mind what happened after, and how far it went into the world of making me explain things I can’t explain, the pressure she put on me.

And also the fact that this isn’t one time one person, it’s a pattern.

What did I remember and what did I forget?

I tried to tell her the effect of my back on my abilities. I did not do this well, especially with the huge improvements in some of my back-related skills that are the most spectacular to other people.

I neglected to tell her the effect of a constantly leaking tube on my abilities.

I tried to tell her my fears about services.

I neglected to tell her anything about my tubes at all. I can’t get out of here safely until my tubes are working better. I can’t function until my tubes are working better. And nobody on the planet can take care of these tubes properly as they are, unless the hospital magically grows better staffing. Which, despite the nurse’s strike and everything last year (which I was 1000% behind, btw), they just plain don’t have.

So what’s pissing me off:

STOP REQUIRING EXPLANATIONS, PPL.

If I say I can’t do something, just believe me.

DON’T REQUIRE THE EXPLANATION.

Don’t treat me like I have to be able to put things into just the right words, just the ones you can understand, in order to be worthy of being treated seriously about whatever I’m saying.

I’m sick of this.

Now I remember something that happened before I came into the hospital.

Quite awhile before.

Someone was asking me questions about back when I got my feeding tube.

Someone with a lot of authority over my life. Someone whose opinion, like the opinion of a physical therapist, could actually have a huge impact on my future and my services and a lot of other things. Not, in other words, someone I can afford to blow off.

They were asking questions about one of the most traumatic things that’s ever happened to me.

And then the dreaded thing happened.

They said, “But wait, that doesn’t make sense, why would a doctor say that to you?”

And first, how the ever-loving fuck should I even know the answer to that question?

Like — I can’t read minds. I don’t to this day know what the doctor was thinking.

But okay, I’m actually technically a researcher into medical discrimination against disabled people. Like, published and everything. I know some things. And in addition to formal research, I’ve done a lot of informal research into the opinions of medical professionals about the quality of life of disabled and nondisabled people and its impact on medical decisions. Including life and death ones like whether to insert a feeding tube.

So I’m actually — by the outside world’s standards — technically overqualified to answer that question.

And I’m conditioned to answer questions without even considering that I can say no.

So I dug into what I could dig into from that stuff.

And I gave the person some kind of answer about why a medical professional might be biased, what biases are common, and how those biases may affect medical decisions about people with developmental disabilities and people with feeding tubes.

Here’s the thing:

I SHOULD NOT HAVE TO KNOW ALL THAT TO HAVE A PERSON WITH IMMENSE POWER OVER ME BELIEVE A STORY THAT HAPPENED.

Especially since if they really want to go around doubting what I said, there are other ways of checking up on it. In the case of this particular doctor, he said this thing multiple times with multiple people in the room. Some of those people worked at the same agency as this person. Some of them were known to them in other ways where they could’ve contacted them. I would’ve gladly given them ways to do that if they really wanted to check up on this. Basically there were tons of people who heard this conversationA, knowing why wasn’t necessary to proving that the conversation happened.

But all this is overkill because.

This was all over one sentence.

And there’s something truly invasive or something about “I don’t instantly know why something happened, so if you don’t explain it to me, rapidly, then I won’t believe the person who is telling me it happened.”

Why is it my responsibility to explain or justify what a doctor said to me?

Nobody has to believe me, of course.

But I have a real problem with being held to a high standard of proof, in order to just have a fucking conversation.

Like, I don’t think I grill people that way.

It runs like: “Explain everything to me right now in precisely the way I want to understand it. Provide all the information I want in order to be satisfied that this conversation can even continue. And nothing you say will satisfy me anyway because I’m not actually asking for an explanation I’m asking you to wear yourself out saying a lot of words that I’m about to shoot down and demand further explanations for anyway.”

It’s not okay.

1 No, I don’t remember which doctor it was, nor does it matter for anything related to either the conversation then or this discussion now — I was just saying the doctor had said something and did not expect the third degree in the middle of telling a story where it was kind of a tangent anyway.

Posted in Developmental disability, Developmental disability service system, food, HCBS, medical, Self-advocacy, tube feeding

They’re withholding access to food.

The only food I officially, reliably have access to right now is food that doesn’t work. I don’t mean food I could make work if I fudged it a little, I mean food that I can’t sustainably live on or can’t get down my tube or things like that. I just don’t have the energy or ability to explain all the details. I don’t want anyone to think there’s an obvious easy solution just because I didn’t explain it, and I don’t want pressure to explain, I can’t take any more pressure right now.

WHAT MATTERS HERE: HOWARD CENTER DEVELOPMENTAL SERVICES IS PREVENTING ME FROM EATING.

Longer version (but still even after writing all this can’t explain the complicated food prep logistics and those are NOT the focus of this post, just be aware they’re real and every day we wait to solve this creates WAY more problems):

Doctors and a nutritionist have written orders saying I can bring cafeteria food home from the hospital, blend it into J-tube-friendly soup, and bring it back to hang in my feeding pump, or else buy and make the food all on their own and bring it in. This may have taken a lot of work on their part because hospital policy is that we’re required to be on an impossible feeding formula.

Howard staff are used to doing things like this. If I were home this were restaurant food (and the menu here is that good, easily, as well as designed in a way that fits my dietary needs perfectly well), Howard would not object to staff doing this kind of thing. If I bought it from the hospital cafeteria and brought it home, Howard would not and has not in the past objected to staff doing this. Staff know how to make food into soup. It’s part of their job. They’re good at this. The cafeteria version eliminates most of the work that Howard staff would generally have to do — they don’t have to prepare a meal, they don’t have to ensure my safety while I prepare the meal, etc. All they have to do is the part they always do anyway (because it’s the hardest part for me to pull off physically) — use a blender and a chinois. A blender and a chinois the hospital kitchen doesn’t have, and that violate hospital policy for me to bring in.

So basically it’s easy.

And Howard won’t do it.

They refuse to do it.

Which means I can’t eat safely until someone finds another solution.

I actually had this conversation with my case manager today (roughly paraphrased):

CASE MANAGER: It’s taken care of anyway if the kitchen is willing to give you a puréed diet.

ME: They can’t guarantee that the puréed diet is safe to go through a J-tube.

CASE MANAGER: Then they didn’t agree to give you a puréed diet.

ME: Yes they did. They just don’t know if their blenders are good enough.

CASE MANAGER: If they can’t guarantee their blenders are safe, they didn’t agree to give you the puréed diet.

ME: They not only agreed, they require me to on the puréed diet now, and they don’t know yet whether their blenders are good enough because we haven’t tested them yet!

CASE MANAGER: That means they didn’t agree…

ME: You’re expecting reality to work like some kind of logic game. This is the real world. It doesn’t do that.

And he utterly refused to address the fact that it was 10 minutes from the end of the business day, I needed to eat that night, my other case manager wasn’t answering the phone, and it was apparently her department not his so there was absolutely nothing he could do.

There’s always absolutely nothing they can do, and they always say something to justify whatever’s going on, even though it makes no sense.

Right now everyone’s big one is “Someone else is handling this.” I’m a hot potato and I’m someone else’s problem and it’s going to be the death of me.

And I’m not okay with that.

The puréed diet does not fit through the feeding pump. Eating long-term without the feeding pump ranges from impossible to hazardous to my health. Eating short-term without the feeding pump for a few days has already proved impossible. Forcing me onto the puréed diet forces me onto a diet that isn’t even compatible with my body long-term. (There’s no vegetarian puréed diet balanced in the way the non-puréed main patient menu I was using before is balanced, which is perfect to my needs. The only way I can eat non-vegetarian food is in a way that isn’t safe. The few vegetarian protein options in the puréed diet are things that won’t work to get what I need. It’s complicated, but suffice to say this is not actually a solution at all.)

I have already been making do with the best things I can as a temporary thing for the last few days.

I can’t sustain that.

I’m getting weak.

I was having trouble breathing earlier. Not my usual recent trouble breathing. Weak breathing muscles. That can be neuromuscular, or adrenal insufficiency, or other things, but it’s related to the weakness from not eating.

I’m dizzy and light-headed all the time.

I’m starting to have more trouble thinking than I have since I first got here.

I can lose the physical and mental capacities necessary to fight this, fast and easily.

My health is like a house of cards. And they’re pulling out the bottom.

They’ll claim to have their reasons. I already know their original claims. It’s all bullshit.

Howard wants to get rid of as many of its high-medical-needs clients as they can.

Nursing homes, the VNA, anywhere they can manage.

We’re expensive and difficult. They don’t want us.

Everything else is excuses.

Tonight, I found some stuff in the fridge. I’m eating the last of it right now, the right way, through my J-tube, with the hang-bag.

Howard staff have now been disallowed from going back into my home to help me get things. So I am not even allowed to have them bring the blender and chinois here without using them in case I could persuade the hospital to use them. (It’s unlikely I could, but I can’t even bring them because nobody’s allowed back at my place.)

They were plenty allowed to go back there when they had a cat to feed.

Now that the cat has another home, they aren’t allowed to go back.

Except, except, to check the mail.

But not into my apartment. Even though one of them found an important delivery inside my apartment without which I’d have a lot less problems. Even though I have things I need inside my apartment.

I am no longer allowed to decide what I need to get from my apartment.

It’s entirely up to my case managers.

This is not about my safety. It’s not even about their fears of liability, although that sounds plausible at first glance.

This is about them using and proving their power. And ultimately it’s about them trying to shove me out a door.

All this time ever since they started this bullshit, they have been holding a door open with one hand and shoving us with the other.

They did it until my back broke. They kept doing it even knowing my back was broken.

(That my back was broken is no surprise to them. The first stress fracture, T11, was something very very prominent in arguments with them over the years about the ethics of their actions and formal complaints of medical neglect. None of this is a surprise to them.)

They are claiming that my abilities are getting less and less, just magically.

Really, they are taking away every support I have and then claiming that the resulting situation is just naturally what would happen to me anyway.

This is evil, this is vile, this is wrong, this is truly truly evil.

I’m hungry. I’m hungry. I’m hungry. I’m hungry. I’m hungry.

I’m fucking eating and i’m hungry.

Because another fun fact: It takes time for my body to notice it’s eating again.

Like, when I’m my healthiest, it runs like this:

I forget to eat for a night, or can’t because of an upcoming surgery, or something.

I immediately eat perfectly well exactly what I’m supposed to and how I’m supposed to, the next night.

There’s still a few days lag time before I’m feeling okay.

That’s when I’m at my best.

That’s because when you eat through a feeding pump, the food goes in really slow. Like it can take 12 hours to get a 1-liter bag of food, possibly. I usually do this at night. Faster usually, but not always, it depends how my guts are working. But still not fast exactly.

So it’s not going in at the normal rate, and it just takes time for your body to react to the combination of not eating, eating again, and the whole pattern of getting food and not getting food involved.

I’m currently eating at 100 mL per hour. That means in roughly an hour or two, I will be out of any source of a balanced diet until this problem is solved.

Also understand that it’s not like I got a full liter. What I’m eating tonight is one meal. Like one cafeteria meal. Not a full day’s meals. So this isn’t even caught up by those standards.

I am better with the food but I can’t do any of this without being able to get roughly three balanced meals a day through my blender and chinois. I can’t do that without someone’s cooperation.

The doctors are doing the best they can. The nutritionist did the best he could. They wrote the orders. They got approval. The only people standing in the way of me and food right now are Howard Center. And I’m not asking Howard to do anything they haven’t done, been told to do even, before.

That means they have a responsibility to make sure I get fed.

They are not feeding me.

They are the only ones at this point not feeding me.

Nobody else needs to change anything anymore. Only them.

THEY WON’T FEED ME.

I NEED FOOD TO LIVE.

I need food to heal from this injury. Until today, I was walking more and more every day. Today I didn’t have the energy to go out walking at all.

They will go out of their way to do things that will manipulate me into leaving their independent living program.

Meaning — they will go out of their way, go to great lengths, to help me, if they think the help will encourage me to leave.

But if refusing help will manipulate me, they’ll do that too.

And they do it all the time.

And they’re doing it right now.

This is part of their ongoing pattern of doing less and less for me and then acting like they’re staying the same and I’m changing.

And they’re doing this to all of us in various ways.

Other people they’ll take out the supports, and if the person manages without them, say “You don’t need our support anymore, so you don’t need services.” Even if they do.

Other people it’s more like me, they take out the supports, then tell us how inviting and wonderful all these other programs are — Shared Living, VNA, nursing homes, group homes, assisted living, whatever.

I’m getting really tired.

When I fall asleep, I don’t know what I’ll wake up to.

I don’t know what my food reality is gonna be.

Howard doesn’t want me.

That’s what this is about.

It’s about trying to shove me out the door.

It’s not that they necessarily want to kill me even though it sometimes looks exactly like that.

It’s that enough of them — and the agency as a whole — just don’t care about that part or have convinced themselves that if it happens it would’ve happened anyway and/or isn’t their responsibility.

The hospital is the perfect place to make me lose everything.

I’m in a holding pattern.

They can take things away, but the hospital will try and step in and keep me alive. If the hospital for any reason fails to do so, then “obviously” everyone did everything they could and the “real cause” of my death is just that I have a crappy body that was gonna die anyway. Everyone can feel sad or pretend to feel sad and nobody has to feel guilty.

Meanwhile, if the hospital does keep me alive, which it probably will, then I’m nobody’s problem anymore.

People at the hospital (they don’t all agree) are saying i’m rehab’s problem and/or that I can maybe get better and go home (or be declared better because of walking regardless of preparedness for home or whether I’m actually healed) and be Howard’s problem again. Rehab is saying I’m Howard’s problem entirely and they shouldn’t be required to deal with me at all. Howard is saying I’m the hospital and rehab’s problem.

They can pass me around in circles.

It’s hot potato and musical chairs and Somebody Else’s Problem all mixed together.

Musical chairs because when they pass me around in circles, the supports that keep me alive, as well as the supports that keep me living in freedom, disappear.

One by one by one by one by one out from under me, faster and faster.

Their endgame is diabolical.

Understand, also:

Ever since I have got here, every word I have posted online has cost me physically or mentally or both, usually both.

Writing this is exhausting.

Exhaustion is not safe for me right now.

I have chosen to put myself at risk to write everything I have written, for a reason.

I’m getting more wiped out.

I’m doing a lot of this writing because I want people to know what’s happening to me and other people in my position. Because I am not unique. Because I care about people and I want to contribute certain things to the world and these things all matter to me.

So it’s not that this is easy. And it’s not that it’s without cost. And it’s not that it’s always even possible. I write when it’s possible combined with other factors. I haven’t been capable of this in awhile. I may stop being capable of it again. I don’t know.

But it matters to me. A lot. And that’s why I do it. And sometimes the reasons it matters may be obvious. And sometimes they may not. But they’re always there, even, or sometimes especially, when something seems frivolous.

But this isn’t an ability that I have on demand. And it never ever comes without a cost even when I can push myself into it. And when I do choose to do this over spending my energy on something else, there’s always a very good reason.

No matter what happens, don’t let my efforts be wasted.

But mostly, right now, I want a guarantee that I can eat whatever I need to eat however I need to eat it whether that stays the same or changes or is complicated or simple.

I’m really really really really really really really hungry.

And being hungry affects me in ways it doesn’t affect healthy people, faster than it affects healthy people. (And no being fat doesn’t mean being hungry or not eating like this, is healthy. Ever.)

And like everything I’m frustrated by the fact my body does this thing where it looks reasonably okay until it’s way not okay. When will people realize by the time they can see something going massively wrong, something is already going massively wrong? They’re not always gonna see it creeping up (although sometimes they can, and just don’t). Sometimes it’s gonna look like nothing happened until it did.

And it’d all be easier for me and them if they took steps early on instead of waiting until things got horrible.

Of course given some of the horrible things I’ve witnessed in this place, that shouldn’t be a surprise, but…

I’m hungry. I’m just hungry. Everything right now just comes back to I’m hungry.

I’M HUNGRY.

How many ways are they gonna break my body before it just breaks completely? Because that’s where all this is headed, and I saw it a long time ago, and so have a lot of people close to the situation, inside and outside Howard.

This kind of thing is happening to lots of people.

I’M HUNGRY.

Posted in Being human, disability rights, HCBS, medical, Self-advocacy, Values & Ethics

I’m in the hospital and everything has gone haywire and my life is chaos and I can predict nothing.

I can’t write everything at once so here’s what I’ve got for now. It’s factual medical stuff because that’s the easiest thing to write at the moment. It’s not all the factual medical stuff. It’s not everything I want to say. But to write anything suitable for blogging is harder than fuck right now so I’m doing what I can.

I’m in the hospital. Many things have gone wrong.

One of them, or a lot of them, is related to osteoporosis.

I have severe osteoporosis. Mostly from having to take lots of hydrocortisone, as far as we know. I have to take it, so I can’t get rid of it, I’ll be on it for the rest of my life.

Originally they told me my bones would be normal if I were various ages between 95 and 115. I am 38.

Right now my back is broken in two places. They’re called compression fractures. One is at T11 and one is at T7. T11 is stable. T7 is not healed. They are caused by a combination of osteoporosis and moving the wrong way, generally. With severe enough osteoporosis, moving the wrong way can be as simple as sneezing or bending forward.

I have kyphosis now as a result of the compression fractures. This is common in osteoporosis as well. Kyphosis means bending forward, sometimes known as hunchback. Some amount of kyphosis is common but a lot can be a problem. I have enough to be a problem.

My bone density was just tested using the gold standard testing and is worse than before. The osteoporosis clinic are holding off on doing my Replesta (a yearly osteoporosis treatment) until we can meet jointly with my endocrinologist who prescribes the hydrocortisone (steroids) to figure out a plan.

Right now the endocrinology team have been lowering my steroid doses as much as they can, but they feel they’ve done as much as they’re comfortable lowering right now. My doses are extremely high because we figured out last year during a month-long hospital stay for C Diff, that I needed that amount between the severe adrenal insufficiency and the probable-POTS (I’ll just refer to it as POTS from now on regardless)1. There are many good reasons to suspect that the kind of hydrocortisone I have to take and the way I have to take it in my tube are causing me to not absorb it all, hence the extremely high dose needed. But we’re always looking to reduce for obvious reasons. Hydrocortisone is my most important med and my most dangerous one at the same time. It keeps me alive, I would die without it, but it also eats my body alive and is causing prediabetes and severe osteoporosis.

I am having a lot more problems.

My back doesn’t work right anymore. Any time I stand up or sit down, it hurts like hell and feels wrong in a way I can’t describe easily. That wrong feeling seem more important than the pain in telling me I’m doing something disturbing to my body.

All the things that were difficult before have become impossible now. They used to be difficult things that will damage my body. My body is now well and truly damaged and won’t even do half those things at all.

They are telling me that I can’t go home until my bones knit.

They are telling me that will take longer possibly, because I’m on steroids and have osteoporosis. I have trouble healing in general in other areas so I hope not but I suspect they’re right.

They are telling me different amounts of time but amounting to “weeks and weeks”.

They are telling me to go to rehab until I heal. Which I know full well can turn into rehab / nursing home / ICF-DD / etc. forever, not rehab-temporary and go home.

Rehab is saying the developmental disability agency should handle it. Which is ridiculous.

I am having huge tube issues. Leakage mostly. Lots of it. Nurses here can’t manage it properly. I can’t manage it anymore. It’s terrible. Doctors say they don’t know what to do.

My entire future is up in the air.

My entire future is up in the air.

My entire future is up in the air.

Vermont developmental disability policy — in ways that violate federal Olmstead law — made this worse. It appears to be a statewide problem but Howard Center Developmental Services are the ones I deal with.

There is no pleasant or acceptable way to put this: They made me scrub tables and countertops and mop floors with a broken back. I can’t sugarcoat that turd and I refuse to try anymore.

They have a new policy that people with developmental disabilities who want to remain in our own homes must physically participate in activities of daily living in order to get help with them. They have lied to me and said this has always been the policy. Everyone knows it’s new, especially when applied across the board to all clients regardless of things like additional physical disability. But it’d be wrong even without physical disability for lots of reasons I don’t have the words for right now.

They have taken advantage of me.

I take pride in physical work. I always have. There was a time when I was quite good at it, even though I’ve always had physical impairments. I have not always had osteoporosis. At any rate, I enjoy it, and I enjoy having done it, and I prefer to do things for myself. These things have been deliberately and manipulatively used against me. They have been used to encourage me to do more than I can actually do. They have been used to justify things that are unjustifiable.

For example, my main blog picture that I use a lot of places is a picture of me being violently assaulted. But it’s also a picture of an activity that I take great pride and enjoyment in: Weeding the garden. It is not too hard to get me to weed a garden because I love the feel of my hands in the earth. I love the work. I love seeing the results of my work. That’s just my personality and preferences in the world.

But.

People with severe osteoporosis in their spine should not be weeding gardens. It combines virtually everything that endangers your spine to a stress fracture. Bending forward in that way is just bad for osteoporosis of the spine. They’ve told me bending and twisting my spine are two of the worst things I could be doing. They’re certainly two of the most painful.

So.

It’s easy to push me to do this. It’s very easy. There’s so many buttons they can just push, easily, to make me obey their rules. Which at the time, for the program I was in, meant that I could not get help weeding the garden without weeding it myself. I could not participate in a safe way according to them. I had to participate the exact same thing as the staff was doing. So if I was not weeding staff could not weed. And even trying my best that meant the garden never got weeded fully.

Mind you if they wanted participation at the time, I could’ve been holding the hose and watering, or doing something else that wouldn’t strain my back. But I wasn’t. And all of that can either cause a stress fracture or cause other damage that can lead to stress fractures getting worse or becoming more likely later. It’s not good. Ever.

And they had other rules like if I started to show symptoms of heat exhaustion, which I’m very prone to, then if I tried to sit it out in the car then all help in the garden had to stop for the day. So again my garden never fully made it off the ground and I never got to eat what I grew. And not everything grew that could’ve grown.

But they said because I liked gardening all this was okay. No. That makes it less okay. That means they took advantage of my interests. They took advantage of my pride in my work. They took advantage of a lot of things. To force independence theater down my throat until it fucked up my back something awful. Again there’s no good way of telling people they had me scrubbing tabletops with a broken back.

That’s just one example.

Now it’s everything around the house.

I’m allowed to do something else. Like, I can’t do dishes, so I’ve been washing countertops while someone else does dishes. That was an improvement and I let them do it. Felt like a compromise. Was and remain terrified of losing my apartment over this. Because their definition of independence is completely fucked up. And because they force this policy on all of us. So it’s so easy to get pushed into it. One part by fear, one part by pride in your work, they know how to push all our buttons and they do.

I am proud of what I do.

I enjoy work.

I am scared of being taken as lazy.

I am scared of losing the life of my own I’ve fought so hard for.

All those things.

They use.

They use them on purpose.

They hurt us with them.

It don’t matter — whether we have osteoporosis or not. It does and doesn’t. Because this is wrong to do to anyone.

But with osteoporosis it’s also doing physical violence.

It is violent to work someone until their back breaks twice and then work them some more after you know.

Violent.

This is violence.

They hurt me.

This is not okay.

Nothing can make it okay.

Even by their definitions of independence — which they claim this is all about — they’ve made me lose independence, not gain it.

When I got to the hospital I couldn’t walk to the bathroom on my own.

My arms don’t work the same as they used to. They’re way more of a problem than walking.

I can’t sit anymore without lightning fire shooting up and down my back until I can’t concentrate on anything.

How is this independence? Even by the messed-up definitions they use?

They’ve taken away my ability to do shit for myself.

Their idea of independence is all about doing shit for yourself.

That’s not how I define it.

But they do, and by their standards, they’ve taken it away.

By my standards they’ve taken it away too. By making me dependent on them to make decisions about what I should and shouldn’t do with my body.

But by their standards, which are about being able to do shit, they’ve really fucked up any chance I have. I’ll be really lucky if I can fulfill their terrible and illegal requirements to keep my ability to live on my own.

There’s hundreds of other clients in the sort of programs I’m in. We are mostly shunted into either the independent living programs with these requirements and the ability to live in our own home, or the shared living programs where you have to move out of your home and into a staff’s home. Where it’s staff’s rules and you don’t have as many rights but you can supposedly get more care. (Often it’s more like nursing homes, no more care but everyone feels like you’re safer.) Based partly on your ability to do all this shit that didn’t used to be a requirement to live on your own.

And I’ll point out again this is massively illegal.

We have very few places to turn.

We are isolated from each other and it’s hard to organize even when we want to.

The state has a huge bunch of programs that say they’re there to protect us and give us legal assistance when our rights have been violated. They’re almost all bullshit. They look good on paper. We are shown the back door and told to leave when we manage to get in at all. Or we are given services but as badly as they can manage. The “protective” system is really hard for anyone with a cognitive disability to navigate.

So don’t tell me all the right numbers to call. I’ve called them all. Or my DPOA has. It don’t work like that. I wish people understood that. I wish people understood all those organizations serve themselves, not us. People with developmental disabilities are left in the cold, period. When we’re not, it’s sheer dumb luck.

People are also being pushed out of services. A chaplain told me her DD friend started doing really well at the independence theater so they told her she didn’t need help anymore and removed all her services. She needed and still needs them. Being able to appear to do some things some times doesn’t mean being able to do all things all times when they’re needed. People can die from lack of services. People can suffer. It’s not okay for so many reasons.

I feel like I’m trapped in a maze I’ll never see the outside of again.

Lots of things I want to do with my life.

Including show people this is happening. To me and others.

But I want to do things. Say things.

I don’t know if I’ll ever do any of them.

I didn’t even know if I’d be able to write this. Or anything bloggable.

I don’t know anything about my future.

My cat is living with someone else for indefinite. I want to be with my cat.

I want to be able to be with my cat.

I want to be able to crochet.

What they’ve done to me has taken all that away for who knows how long.

Rehab, I’m told, won’t even let cats visit. Dogs yes cats no. WTF?

Wheelchairs are torture devices now because they require sitting and sitting is the enemy. Sitting hurts my back and makes my tubes leak.

My ostomy is not healed even after a year.

My new J-tube may be ruined.

My surgeon told me when he put it in that it may be the last one he’ll ever allow me to have.

I need a J-tube to survive.

I have a gut feeling there are solutions and nobody’s finding them.

Other things there may’ve been solutions once but they may be gone by now.

I don’t know yet which is which and where is where.

My future is a big fuzzy unknown.

I don’t fear death but I want badly to be alive. There’s so much I want to do.

I want to write things that are important to me.

I want to fulfill the promise I made to make a video about feeding tubes. Even with all the complications I can’t possibly recommend them higher. I love what my feeding tube has given me. It’s given me life. I want to tell people that. I need to tell people that. It’s given me life. Life is what I want. I promised myself if it saved my life I’d make a video explaining this and that’s become too hard.

I want to do and say a lot of things about a lot of things.

I want to crochet.

I want to live with my cat.

I want to be a human being I want to be a human being I want to be a human being.

Practically nobody treats me as human. I treasure everyone who does.

Even now people act like it’s a surprise my back is broken.

Even now people act like it’s a surprise this has consequences.

How many times do I have to break my back?

How much kyphosis do I need for how long?

I have other curvature too.

Someone who has watched all this happen, really close up, for years…

They told me something.

They said, in an ordinary family, if someone gets sick or breaks a bone, the rest of the family does more of the work so that person can rest.

Going to the hospital is the first rest I’ve had in ages.

And it’s the first my abilities have improved.

And I’m working my ass off, mind you.

I do a little more work every day for physical therapy.

They’re telling me, I need to learn to feel my body.

I’m learning to feel my body in ways I didn’t know.

They said nobody can do it for me, I have to figure out what “too much” feels like.

I’ve been taught never to obey “This is too much” from my body. Never to feel it, never to obey it.

Howard Center has practically made it a crime. It goes against “independence” to ask for help when something’s too much.

They could’ve kllled me.

This kind of thing might still kill me.

I will no longer say yes to everything.

My arms don’t work in so many ways.

Everything’s haywire. It’s like having a whole new body.

I’m having to learn a whole new body.

It doesn’t move the same, it doesn’t react the same, it doesn’t feel the same.

Everything is different.

My back sends me signals I can’t even compute.

My arms do weird things every time I move them.

I have trouble getting enough air.

I have new muscle spasms.

All triggered by random-ass things I can’t predict.

And no notion of whether rehab is gonna be an ability to recover for awhile, or an exercise in frustration as they tell me to do shit that’s bad for me and don’t believe me when I tell them what I know about my own body. Whether I’ll stay a little and leave, or get trapped in their system or some other system.

And people think this is normal.

People think this is okay.

People even think this is good.

If they say it’s not good for me, they still sometimes think it’s good for everyone else. It’s not. This is wrong to do to someone. It doesn’t just hurt you physically. It hurts you all kinds of ways. All in the name of helping.

And meaning well doesn’t make this okay.

Nothing can make this okay.

THIS IS WRONG.

THEY’RE HURTING US.

IF THEY CAN SAY WE LIKE IT, that MAKES IT WORSE, NOT BETTER.

My fucking back is broken twice and even after the x-rays happened they still kept going.

My fucking back is broken twice.

My ribs have been broken so many times they don’t count it on the x-ray.

My hip has a healed stress fracture.

My body is falling apart.

Some of that is just osteoporosis.

But some of that is being forced to do shit I can’t safely do.

Also please remember that in a person with adrenal insufficiency, a broken bone can trigger a life-threatening cortisol drop or adrenal crisis.

We often don’t catch the broken bones as they happen. They show up on x-rays or CAT scans later. Often while looking for something totally different.

This is a stress fracture of the thoracic spine:

This is kyphosis stemming from an osteoporosis-related stress fracture:

I’ve got both of those going on.

My sodium has been tanking worse than it ever has since my ICU stay where I stopped breathing due to sodium and potassium deficiencies. I’m on fluid restriction to try to get it back up. I have milder potassium issues right now and right now all my electrolytes but sodium are mildly abnormal. This is all tied to the tube issues.

When I came to the hospital I was delirious. That morning I had been in my chair doing something active and engaging, and next thing I knew I woke up across the room on the floor. I’d shit myself bad enough my pubic hair was saturated with shit. I’d aspirated antacid that’d come up from my stomach. I couldn’t pull myself off the floor. I spent a couple hours dragging myself around until someone came in and called 911. I don’t remember everything clearly but I’ve been in the hospital ever since.

People think this is normal, inevitable, okay.

I’ve been watching hospital roommates get talked into rehab, nursing homes, into not going home.

I don’t see any choice but saying yes to rehab. I know what rehab is. I still have no real choices in this system.

The night before the hospital, Howard Center told me they couldn’t have anyone stay with me in the emergency room. VNA had told me I wasn’t acting like myself and wasn’t thinking straight and that my sodium must be very off. It was. But since nobody could stay with me, I opted for coming home with the woman who took me at the end of her staff shift. That meant missing the medical treatment I needed.

My friend visited me recently. They said they walked by Howard Center and wanted to just go in and scream at someone. They didn’t, fortunately. But it’s a common feeling among people who know me well. They’re angry. I’m angry. Over what happens to me but also that it’s happening to others. The numbers are such it’s impossible my situation is unique. I wouldn’t be as motivated to tell people all about this if it was unique.


Graph showing sodium levels for the past several years. The first huge dip is my ICU stay when I went alkaline and was admitted for respiratory arrest with oxygen around 60. Other large dips are often hospital stays, often involving going alkaline. The series of dips towards the end is recently. Recent dips is the lowest it’s been since the ICU stay.
Thoracic spine, 2 views 5/8/2019 12:06 pm
Clinical History/Comments:
K94.13-Enterostomy malfunction (HCC-CMS)-ICD-10; J-tube site leakage, r/o constipation

AP and lateral views of the thoracic spine are compared with the prior examination dated April 21, 2019. The images are underexposed because of body habitus. There is mid thoracic kyphosis resulting from veritable plans involving T7. There is also moderate wedging deformity of T11. these regions are very poorly seen on the last examination, and I am unable to determine whether there has been progression of deformity. Overall kyphosis looks very similar.

Impression: Compression fractures of T7 and T11, suboptimally seen because of diffuse osteopenia and body habitus.

An x-ray report describing compression fractures at T7 and T11, and kyphosis. The “body habitus” stuff is a medical way of saying I’m fat and they didn’t expose the x-ray long enough to compensate. There’s people a lot fatter than me who get good x-rays, so I don’t know why they don’t just adjust things the way they’re supposed to sometimes.

Here’s a webpage about compression fractures of the thoracic spine if you’re interested. It has a lot of information about how they work and what to do and not to do. The drawings on this blog post are from there. It’s the University of Maryland Medical Center website.

When a bone in the spine collapses, it is called a vertebral compression fracture. These fractures happen most commonly in the thoracic spine (the middle portion of the spine), particularly in the lower vertebra of the thoracic spine.

There is not one single cause of compression fractures, though the word compression would indicate that the fracture occurs because of too much pressure being placed on the bone. If the bone is too weak to hold normal pressure, it may not take much pressure to cause the vertebral body to collapse. Most healthy bones can withstand a lot of pressure and the spine will bend to absorb the shock. However, if the force is too great for the vertebrae to sustain, one or more of them can fracture. To understand a fracture, think about bending a pencil. If you place pressure on the pencil, it will bend a little then go back into place when the pressure is gone. However, if you bend the pencil too far – past its breaking point, it will crack or break apart. Similarly, the amount a vertebra collapses/fractures depends upon the amount of pressure it has to withstand.


A common cause of compression fractures is the disease osteoporosis. This disease thins the bones, often to the point that they are too weak to bear normal pressure. The thinning bones can collapse during normal activity, leading to a spinal compression fracture. In fact, spinal compression fractures are the most common type of osteoporotic fractures. Forty percent of all women will have at least one by the time they are 80 years old. These vertebral fractures can permanently alter the shape and strength of the spine. The fractures usually heal on their own and the pain goes away. However, sometimes the pain can persist if the crushed bone fails to heal adequately.


In severe cases of osteoporosis, actions as simple as bending forward can be enough to cause a “crush fracture”, or spinal compression fracture. This type of vertebral fracture causes loss of height and a humped back – especially in elderly women. This disorder (called kyphosis or a “dowager’s hump”) is an exaggeration of your spine, that causes the shoulders to slump forward and the top of your back to look enlarged and humped.
Trauma to the spinal vertebrae can also lead to minor or severe fractures. Such trauma could come from a fall, a forceful jump, a car accident, or any event that stresses the spine past its breaking point.

If the fracture is caused by a sudden, forceful injury, you will probably feel severe pain in your back, legs, and arms. You might also feel weakness or numbness in these areas if the fracture injures the nerves of the spine. If the bone collapse is gradual – such as a fracture from bone thinning, the pain will usually be milder. There might not be any pain at all until the bone actually breaks.

Treatment


The most common treatments for a thoracic compression fracture are: pain medications, decreasing activity, and bracing. In rare cases, surgery may also be necessary.


Pain Medications


Mild pain medications can reduce pain when taken properly. However, remember that medications will not help the fracture to heal. The medication is simply to help with pain control. 
To review the types of pain medications used for back pain please review:
Medications for Back Pain


Decreasing Activity


You will most likely have to limit your normal activities. You should avoid any strenuous activity or exercise. You will definitely need to avoid heavy lifting and anything else that might place too much strain on your fractured vertebra. If you are elderly, your doctor might also put you on bed rest. Older bones take longer to heal and are typically thinner and weaker than younger bones. Treat this fracture as you would any other broken bone – carefully and seriously!


Bracing


Another common form of treatment for some types of vertebral compression fractures is bracing. Your doctor may prescribe a back support (often officially called an orthosis). The brace supports the back and restricts movement; just as an arm brace would support a fracture of the arm. The brace is well molded to conform tightly to your body, like a cast for any other fracture. The brace used to treat a compression fracture of the spine is designed to keep you from bending forward. It holds the spine in hyperextension (meaning more extension, or straightening, than normal). This takes most of the pressure off the fractured vertebral body, and allows the vertebrae to heal. It also protects the vertebra and stops further collapse of the bone.
Vertebral fractures usually take about three months to fully heal. X-rays will probably be taken monthly to check on the healing progress.


To learn more about the different types of braces available to treat compression fractures you may wish to review the document entitled:
Back and Neck Braces


Surgery


Surgery to fix most spinal compression is rarely needed. With vertebral fractures, surgery, or internal fixation, is only considered if there is evidence of sudden and serious instability of the spine. For instance, if the fracture leads to a loss of 50% of the vertebral body’s height, surgery might be necessary to prevent damage that is more serious to the spinal nerves. 


If your doctor feels that surgery is necessary to treat your fracture, he or she will probably suggest using some type of internal fixation to hold the vertebrae in the proper position while the bone heals. If there are signs that there is too much pressure on the spinal cord, the bone fragments pushing into the spinal cord may also need to be removed.

Several specific complications can occur with a vertebral compression fracture. If you notice or suspect a complication, please contact your doctor immediately. 


Segmental Instability


If a fracture leads to a vertebral body collapse of more than 50 percent, there is a risk of segmental instability. Each spinal segment is like a well-tuned part of a machine. All of the parts should work together to allow weight-bearing, movement, and support. A spinal segment is composed of two vertebrae attached together by ligaments, with a soft disc separating them. The facet joints fit between the two vertebrae, allowing for movement, and the foramen between the vertebrae allow space for the nerve roots to travel freely from the spinal cord to the body. When all the parts are functioning properly, all spinal segments join to make up a remarkably strong structure called the spine. When one segment deteriorates, or collapses, to the point of instability, it can lead to localized pain and difficulties. The instability eventually results in faster degeneration of the spine in this area.


Kyphotic Deformity

Though the thoracic spine is supposed to be curved (or kyphotic), if the curve in a person’s thoracic spine is more than 40 to 45 degrees, it is considered abnormal. Sometimes this deformity is described as “round back posture” or “hunchback”. It is a common disorder in elderly women who have osteoporosis and frequent fractures. The front of the vertebrae will collapse and wedge due to the lack of normal vertebral space. This condition leads to a more rounded thoracic spine.


Neurologic Complications


If the fracture causes part of the vertebral body to place pressure on the spinal cord, the nerves can be affected. There is some space between the spinal cord and the edges of the spinal canal. However, this space can be reduced if the pieces of the broken vertebral body push into the spinal canal. The bony tube of the spinal canal cannot expand if the spinal cord or nerves require more space. If anything begins to narrow the spinal canal – such as if the vertebrae protrude into its space, the risk of irritation and serious injury of the spinal cord or nerves increases. 
The narrowing of the spinal canal due to a compression fracture can either lead to immediate injury to the nerves of the spine, or irritation of the nerves later. If the irritation on the spinal nerves comes later (even after the fracture has healed), it can cause pain and problems with the nerves not working right. The lack of space can also cause the supply of blood and oxygen to the spinal cord to be reduced. When the spine needs more blood flow during increased activity, the blood vessels may not be able to swell to get more blood to the spine. This can lead to numbness and pain in the nerves that are affected. The nerves also lose some of their mobility when the space available to them is reduced. This leads to irritation and inflammation of the nerves. This condition is called spinal stenosis. For more information on spinal stenosis, you may wish to review the document, entitled:
Lumbar Spinal Stenosis


All of these conditions may lead to the need for surgery in order to reduce pressure on the spinal cord, or to stabilize the spine. Surgery might also be necessary to reduce pain and/or the danger of neurological problems.

-University of Maryland Medical Center, Thoracic Compression Fractures

So that’s a bunch of quotes from the website that explain how serious this is and what it can mean and what to do about it and what not to do. Note how weeding gardens falls under the “worst crap you can do to osteoporosis” category. I’ve never been offered the opportunity of a garden since then. They can’t appear to deal with the idea of helping me in the garden without forcing me to break my back in the process. Like I can do nothing but the things my body shouldn’t. Like they should determine what I can and can’t, should and shouldn’t, do, and then force me to do whatever it is.

Right now?

Chest pain whenever I breathe.

When I stand up or sit down, my breathing goes wonky. Sometimes can’t catch my breath. Sometimes everything spasms and vibrates.

My bedsheets are full of bile from my J-tube stoma. (The tube is not leaking, the stoma is, it’s an important difference. The tube has been behaving wonderfully, it’s something around it not working.)

Moving my arms can range from painful to making things in my back move that shouldn’t.

Lots of these things cause a ‘warning’ feeling, like ‘something ain’t right here’ that’s more disturbing than pain.

There’s a lot of pain though.

Not just in my back.

And I can’t sit anymore. So wheelchairs are my only option for distance yet make me feel like 20 kinds of hell until I’m ready to collapse from pain but can’t.

Can’t reach behind my back.

Can’t bend forward.

Arms are weird.

Back is weird.

Breathing is weird.

Breathing HURTS.

Nobody explains fully.

People say I need to understand for myself.

Never been allowed to.

Rest is better.

Not rest all the time. Supposed to be a balance.

But getting any rest is a novelty.

Any at all.

They all say I’m working really hard.

But I feel like I’m resting a ton.

Even one day of rest I was gaining abilities instead of losing them.

One day.

One fucking day.

I haven’t had one fucking day of rest.

Even though I got fucking pneumonia.

Even though I been having seizures.

Even though, even though.

One day of rest.

Not that the hospital is safe.

But it’s safer than home.

Knowing what the hospital is like that’s scary.

They often ask, “Do you feel safe in your own home?”

No, no I don’t.

I feel manipulated.

I feel taken advantage of.

I feel like I’ve given everything just to get what everyone with a developmental disability deserves.

Given everything until it broke my fucking back and even then they wouldn’t let me rest.

They made me scrub shit.

Even when they knew.

Even when they fucking knew.

Even when they knew that moving my arm across the midline was making horrible things happen in my back.

Even after I told them.

Even apparently after other people told them.

Because I’m not the only person who stood up for me.

People who’ve known me a long time are furious.

I haven’t been furious enough.

I’ve been letting them.

I’ve been letting them parade me around do independence theater just to get the services I’ve always gotten.

Independence theater is physically violent.

It probably broke my back and it definitely made it worse afterwards.

How many times does my back have to break before it matters?

How many people have to get injured or suffer or lose services or lose their homes?

How many people participate in or justify what I call a crime against humanity?

Because the way disabled people are forced out of our homes is a crime against humanity. It doesn’t matter whether it’s recognized as one. It is one. It’s like the Victorian poorhouse. It doesn’t have to exist but people in the societies in question think it does. Doesn’t make it any more okay. In some ways makes it worse.

I’m not someone who can’t accept the inevitable reality of being disabled.

I’m someone who refuses to accept something that isn’t inevitable or right at all.

I’m so sick of seeing people who have perfectly natural reactions to this situation treated as pathological.

I had a roommate who was being shunted out of her family and into rehab.

One of many, but this one…

She objected by stating every day that she was going home.

There were all kinds of reasons she said this.

I didn’t learn till she’d been sent to rehab, that they considered this a sign of disorientation.

I’ve been disoriented since I’ve been in the hospital.

She wasn’t.

It had nothing to do with not knowing where she was.

But that’s what they do.

They call it pathological, when we resist in any way.

And they think this way automatically. It’s not a deliberate attempt to manipulate necessarily. It’s just where their minds go.

I have been delirious. This makes me vulnerable.

I am scared about my future.

I don’t know where to go. What to do.

I have weird ideas about what I want from life these days.

Part of me wants to move to the San Joaquin Valley. Yes, I know what it’s like, I’ve lived and worked there, and I’m not kidding.

But I can’t get out the hospital door, let alone on a plane.

I want to crochet lots of things.

A desert scene in tribute to my friend’s dead cat.

Something showing water and not-water in a particular way I have mapped out in my head.

A tribute to California landscapes that mean something to me.

Places where my bones seem to resonate with the land and the bones under the land in some places.

Things about my ancestors.

I want to publish the letters I’ve been writing to Cheryl Marie Wade. Which is a thing about my ancestors, actually.

Things about what’s happening to people.

Things that are just about being a fucking human being.

I want to be human.

I want to be human.

I want to be human.

If you know what I mean by that.

I want to be human.




1It’s hard to diagnose. So we’re almost certain I have it but not quite. It’s just easier to say “I have POTS” than “I have what’s probably POTS but we don’t totally know” every single time. Here’s some information on POTS if you care what it is. It basically means my body responds to standing as if it means I’ve been running uphill. So among other things I get weak and out of breath from standing sometimes. Like my gastroparesis, it could well be related to the neuropathy that runs in my family.

Posted in Being human, Developmental disability, Developmental disability service system, disability rights, HCBS, Self-advocacy, Values & Ethics

Good agencies make people better, bad agencies make people worse.

Something I haven’t been able to say, but is finally possible to say pretty clearly and directly. Here’s a very simplistic way of describing how to tell a good agency from a bad one:

Insert people as staff or management or whatever other jobs there are.

See if they treat their clients better, worse, or the same just by being there.

I don’t believe in “good guys” or “bad guys”, let alone something as simplistic as being able to tell by what color hat someone’s wearing. But sometimes you have to simplify things to communicate them. Like most people, I like to think of myself as a decent human being. And here I am wearing a black hat. It’s my favorite of my own hats, like the ones I bought for myself. Most of my favorite hats are actually brown and inherited from my dad. Make of that what you will.

A good agency will, by the way it’s structured, encourage people to behave with respect, responsibility, and ethics.

A bad agency will do the opposite.

A bad agency will make it so that it requires a great deal of effort to behave like a decent human being even if you’re trying really hard to do so.

A good agency will make it so that the average person will go in and do better than they otherwise would have.

A good agency will make it so that someone going in with malicious intentions will find it hard to act on those intentions or last long within the agency if they manage it.

Put simply: A good agency will make it easy to be good and hard to be bad. A bad agency will make it easy to be bad and hard to be good. Good agencies bring out the best in people, bad agencies bring out the worst in people.

A very good agency will change many people with malicious intentions for the better, through means that are themselves good. A very bad agency will change many people with excellent intentions for the worse, through means that are ethically muddy at best and outright evil at worst.

All of this is simplistically worded. But hopefully you know what I mean. I’ve spent a long time struggling to find words for this. I’m still not there yet. Life is more complicated than a cartoon version of right and wrong. But a good place makes it easy to do the right thing and encourages everyone in that direction, and a bad place does the opposite. Even if it’s never that simple. Which, of course, it isn’t.

But I’m excited that I’m able to even say this much.

Because I’m getting sick of having to add disclaimers to everything I say about HCBS or medical services like “I know there’s good people here, but…” Of course there’s “good people” here. There’s every kind of people everywhere. But that isn’t what makes an agency good or bad. Also, I genuinely don’t believe in the existence of ‘good guys’ and ‘bad guys’ so all of this is an oversimplified way of describing things anyway. But to be able to describe this at all is an enormous relief.

Also, this is one aspect of how agencies operate. This is one aspect of what makes agencies better or worse. And this is a description of a tendency, not something that’s written in stone and never changes.

But it is something.

And I was able to say it.

And given how difficult writing is lately, that feels pretty good. It also feels good to finally be able to say this without practically having to write a novel to do it. I’m tired of having to constantly reassure people that I understand they are often coming in with good intentions, that calling an agency bad is not the same as making everyone who works there ‘bad guys’, or that I don’t even believe in good guys and bad guys in the first place. And never being able to even get to a discussion of what’s happening.

I’m not good at summarizing even at the best of times. But here’s a tl;dr summary to the best of my abilities:

TL;DR: Good agencies make it easy to do good things and hard to do bad things, regardless of what kind of intent and knowledge you come in with. Bad agencies make it easy to do bad things and hard to do good things, regardless of what kind of intent and knowledge you come in with. I’m aware how oversimplified this is, but I have had a lot of trouble writing anything suitable for blogging despite many ideas of things to write. So I have managed to describe one small piece of how to tell if an agency or organization is, generally speaking, a good place or not or somewhere in between. And I’m glad I was able to do that.

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

Best hashtag ever: #GetYourBellyOut

#GetYourBellyOut is the best hashtag ever,

I’d better backtrack.

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

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

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

This moment of comic relief came at an unexpected time.

I had defined my first goal as survival.

I meant it.

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

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

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

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

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

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

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

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

So this is the picture I posted to #GetYourBellyOut:                                               

#GetYourBellyOut

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

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

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

STOMA BELLIES!

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

Posted in Developmental disability, disability rights, Self-advocacy

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

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

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

Obligatory hot dogs…

Because it’s less likely to seriously offend me.

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

Which includes me.

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

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

They’re not meant in good fun.

They say “You’re not a human being.”

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

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

And I don’t use the word slur lightly.

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

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

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

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

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

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

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

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

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

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

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

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

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

Abraham Foxman, “The Last Laugh”

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

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

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