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 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.

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

We need to move further away from traditional institutionalization, not back towards it.

I’ve probably said this before.  But it’s so important I feel like it needs a standalone post.  

Mel holding up a set of house keys.
If only having my own house keys were enough to guarantee my services are not institutional.

I talk a lot about the dystopian hell that exists beneath the shiny surface of the developmental disability home and community-based service (HCBS) waiver system.  Because I live in this hell.  Because people living in this hell don’t get heard from enough, especially online.  Because if something terrible is happening to me, it’s happening to the other people in this system as well.  All kinds of good reasons.

But people misuse the horror stories coming out of the HCBS system.  They use them to say that we need to bring back the old system.  Traditional institutionalization.  Or new shiny variants on it like those farm-based “intentional communities” — a weird word considering people don’t get a choice as to whether to live there.  Those are still institutions, by the way.  So are large parts of the HCBS system.  Institutions are determined by who has what kind of power and control, not by the shape of the building or the number of people living there.

Anyway.

To be very, very clear.

The horror stories coming out of the HCBS system all come from the things HCBS has in common with traditional institutions.

So the problem is not that we have moved too far away from traditional institutions, and need to move backwards to make things better.  The problem is that we have not moved far enough away from the practices of traditional institutions.  The solution is to be less like a traditional institution, not to bring back traditional institutions.

Oh and about that “bringing back the institutions” thing.  I know a lot of the larger institutions closed.  But not all of them did.  It’s not like we just have a world empty of traditional institutions, so “bringing back the institutions” is a concept that doesn’t quite make sense.  We’re still fighting to close them.

But we have to replace them with something better, or people just get moved from one kind of hell to another.

And we’re supposed to be so grateful for this that we don’t complain about the things that have stayed just the same as traditional institutions.  Which is a whole lot of important things.

So again.

The problem is not that we have left traditional institutions behind and need to go back to them.  The problem is that we have not gone far enough away from them and we need to become even less like them.

Anyone using HCBS horror stories to promote traditional institutions is coming at the problem bass-ackwards.  HCBS horror stories should cause people to want to close all the traditional institutions and make services resemble old-style institutions as little as possible.  On a deep level involving power and control, not on a cosmetic level where all you’ve done is slap some new decorations on the walls of the old system.

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

What my home means to me: I have so much to lose.

Nearly every night, I walk around my apartment in the dark. It’s easier to find my footing without the distraction of eyesight. I can feel my legs, my feet, the floor, the ground, the things that lie beneath. I touch the walls to better feel the building itself. Like all buildings, it has a personality. I find and touch the oldest parts of the building, wooden pillars in seemingly random places. They stretch from the bottom of the ground floor to the ceiling of the second floor.

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I explore my whole apartment in the dark, all the time. These days, sometimes I cry. People don’t understand what this place means to me. It’s more than any random home, which would mean a good deal already. I have so much more to lose than I used to know was possible.

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The dark allows an intimacy with the house that would be impossible in other circumstances. I can feel the way it wants to be all the things the best houses are. It wants to be a home, a real home. It wants people to live in it. It wants those people to be happy. It wants to protect them and make sure they’re safe. It wants them to be comfortable. It wants to be a haven, a place of refuge, a place of joy. And it genuinely loves the people who live in it.

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I’ve never lived in a house that was a home. Let alone one that wanted to be a home with every fiber of its being. I grew up in a house that wanted to start fights, to make violence worse, to scare and hurt and trap and imprison. It was such an unpleasant place that even from a young age I’d put myself through things I hated, like sleepovers, as long as they’d let me avoid the house. I never understood homesickness, only its opposite: dread that I’d be trapped there forever. I still have nightmares not about people or events but about being trapped alone in that house, unable to get away from it for the rest of my life. So I’m well aware that not all houses have the personality to be a true home, and how lucky I am to have found one.

I don’t normally watch horror, even cheesy horror. But I did watch every episode of Buffy. And only one truly got under my skin. It had a monster that lived in a hospital. You could only see it if you were crazy, delirious, or neurologically impaired. It sat on the ceiling above your bed and terrorized you while everyone else thought you were just hallucinating. Then it ate you.

Of all the things they showed on Buffy, that’s why I usually sleep with all the lights on. Embarrassing but true. When the lights go off, my brain starts imagining that damned ceiling monster.

The dark has always been a refuge from the pain, nausea, and chaos I associate with vision. It’s a place of calm and belonging. A place where things make sense and move slowly enough to understand. Where I can pick up all the shards of a world that comes through so fast it shatters inside my head. And just stare at the stained glass colors if that’s what happens. Or slowly put each piece back together in something like its original shape, so that something I saw earlier finally makes sense. The darkness itself feels alive, a warm and friendly presence: “Here in the shadows where everything blends, the darkness and me are the closest of friends.”

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This house makes it so I can be in the dark again, comfortably, and not be afraid of the ceiling monster.  The house protects me and makes me aware I am protected, even from my own fears.

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I’m not sure how often I’ve said this explicitly on this blog, but religion is central in my life and redwood forests are central to my religion. The connection I have with the particular forest I was born in, Redwood Terrace, is important to my ability to practice my religion. And while it’s true that this connection exists no matter where I go, it’s also true that it’s much easier to be immediately aware of that connection in some places than others. Like a lot of things in this realm, there’s no real way to explain it, things just work like that.

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Anyway, I find it easy to feel connected with Redwood Terrace from my apartment. Something is different about the ground around this building compared to other places around here. The apartment itself seems to help me connect with Redwood Terrace, as well as it seeming to have developed a friendship and connection with my best friend’s house, which has a similar personality.  All of these things mean I’m more able to practice my religion in this particular home than in any other home I’ve lived in. And that matters, even if I can’t explain to you how it works or why.

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I’ve got so much more to lose than I ever imagined was possible. It’s no longer just a matter of having my own place. I have my own place that I love and that loves me back. That puts things on a whole different level. I have an entire relationship with this place. It would be bad enough if they were trying to make me leave my home, any home I’ve ever had before. After all, there is never a valid reason to make anyone leave their home on the basis of disability. But now it’s not just my freedom I could lose. It’s an entire relationship with a place that matters more to me than I can explain.

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Nobody should ever have to explain or justify why they want to live in their own home. Nobody should ever be told that a perfectly normal desire to live at home is
in any way deviant, selfish, stubborn, denial, unrealistic, or unreasonable. And our society should no more accept this response to disability than we accept Victorian workhouses as a solution to poverty.

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But even if I shouldn’t have to explain, I do want to explain what my home means to me. Having my own place already means a lot more to me than I can express. And I’m not really able to write about that at the same time as writing about my specific home. But having a specific home I’m very attached to, means I have so much more to lose.

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You can’t just replace one home with another, any more than you can replace a human being with another. Even when you don’t mind moving, even when you choose to move, the new place is not the same as the old place. It should always be a choice.

It’s wrong for one person to have the power over another that it takes to tell them their disability means they have to leave their home. But it’s also wrong to use that power if you have it. And each person who uses this power over another human being, bears some of the responsibility for the damage done. And there’s always damage. Taken as a whole, the removal of disabled people from our homes is a large-scale crime against humanity.

Participating in such a thing isn’t trivial, no matter what your role.  Maybe you make the policy.  Maybe you enforce it.  Maybe you grudgingly go along with playing it out, but you play it out on us nonetheless.  Maybe you persuade us to give up ourhomes and move somewhere else.  So many things you could be doing, but it means you bear some responsibility for somethin terrible.  You can’t escape that.  I can’t sugar-coat it for you.

This is my home.

That’s all there is to it.

This is my home.  And anyone who participates in trying to take it away from me, is doing something terrible.

Because this is my home.  Living here is my right.  Having the assistance required to live here is my right.  Nobody gets to chaange that.  And anything that calls itself the Home and Community Based Services Waiver should never include services of a type that force or coerce anyone to move out of their own home.  They’re not home and community based if they force you to choose to leave your home and community for somewhere else, no matter where that somewhere else is located.  This is my home, you can’t just exchange it for another and pretend they’re the same.

Generations of self-advocates with developmental disabilities have fought for the right to live exactly where I am living now.  Lois Curtis fought for this.  Elaine Wilson fought for this.  They were two women with developmental and psychiatric disabilities, and don’t forget it.  They are what the Olmstead decision was all about.  Everyone has fought for this and I will not give it up lightly.  I will fight for it for me and for everyone who comes after me.  And it doesn’t matter if you don’t understand what it means to grow up thinking you’ll never live in your own home, but I did grow up that way and it nearly killed me.  I don’t want any child ever growing up again believing they’ll never have a chance at freedom and a home of their own if they have a disability. My apartment may not mean much to anyone else but it means the world to me and that’s the only thing that matters here.

This is my home.  You don’t get to tell me that’s not important, or that giving it up is inevitable or necessary.  I know better.  I know my rights.  THIS IS MY HOME.  And this is how much I have to lose.  And more.  I will fight to stay here with everything I have in me, and never stop fighting no matter what happens.  Because it’s not just my home at stake.  As long as any disabled person can be told their disability is too severe to live at home, none of us are truly free, because true freedom isn’t conditional.  THIS IS MY HOME.

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You’ll pry my apartment keys out of my cold dead fingers.






I wrote this post using Unity on my Accent 800 communication device.  

This is a reminder that not everyone on the Internet speaks to communiate and some of us use picture symbols to write.

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The screen of my Accent 800 communication device.  Above the words, I’ve pasted in the sequence of picture symbols it takes to get each word, so you can have some idea how it works.  You hit a set of symbols in sequence and it gives you the word you are looking for.