They cared enough to choose an extremely meaningful picture for me on the birthday card. They didn’t have to do that.
The bithday card was not this year, my 39th birthday.
With the dates written, it would have to be my 37th or 38th. If I’m doing the math right.
Things were already hitting the fan in a huge way at that point. I was being hurt by some of the same people who signed the card.
But back then, there were still enough people who cared about me as a human being and treating me like as a human being (or in some cases, at least, appearing to) that things were just… different.
Reading it was like reading a postcard from a universe I barely remember.
A universe that was already disappearing by the time the card came.
But there was a time, if I was hospitalized, Howard would take extra time to visit me in the hospital and help me get better and go home, and help me with the transition home, and give extra help to keep me out of the hospital, and extra help to make up for the fact that you never go home healthy and often need some extra support.
There was a time when they didn’t treat my second mom like she’s made of poison. To the point they won’t allow my caregivers in the same house as her for longer than 5 minutes, and have gone to great lengths to lie in order to avoid having to deal with her, because she complained about their medical neglect and they never forgave her.
But there was a time.
There was a time when some people tried to help me. Even case managers.
There was a time when things mostly worked.
There was a time when people’s efforts to help me were not thwarted by the office people at every turn.
There was a time when many people in the office were actually helping me.
The system was never good.
But it was never like this.
This card was signed by seven people.
They didn’t have to get me a card.
They were being nice. They were treating me like a human. Some of the time.
Explaining my communication style is a waste of time.
Attempting to correct communication misunderstandings is a waste of time.
The only good use of my time is what my social worker says it is.
She gets to define what topics are worthy of conversation and what topics are not.
I don’t get to define anything.
She gets to define how much time we spend together planning my discharge.
She is talking about my options at discharge.
I am not allowed to return to my own home if I want services. Howard has declared it unsafe for staff. It was not unsafe for staff the entire time they were giving me services there up until now, including times when I have been in the hospital. It is suddenly unsafe for staff so they can force me to use a cleaning service they have decided I need to use and have been trying to get me to use for months now. (I did use that cleaning service to clean out an area that was genuinely unsafe. When evaluated, only that area was considered unsafe, not my entire apartment. Howard has seized on the idea of declaring my apartment unsafe for other reasons. Also the part of my apartment that was unsafe was only unsafe because of the state someone else left it in, it was never something I was considered to be responsible for.)
I had by the way been told it was an access issue (not being able to get around with my walker) until it suddenly and unexpectedly became a “safety” issue. I guess safety issues are a bigger deal. They didn’t care about my safety when they were fucking with and probably causing my stress fractures so I have no reason to assume they care now.
So I set up a situation where I would be living with someone else while I recover from my injuries and illness. We’d been expecting to have to do that anyway because I’m in terrible shape and the hospital wants me out anyway. I’m leaving Tuesday.
Anyway, I’ve lived in this person’s house before, with a bed larger than my bed is now. They now claim that my bed will make her house unsafe for staff. They also claim there is no seating in her house for staff. None of this is true.
At any rate, not only do my social workers get to control conversations, but they apparently get to control things about the placement of my bed. And Howard gets to decide whether my bed is safe. Howard helped me buy and transport this bed in the past and were only too happy to help. Now I am being told I will get the minimal help possible and then only if I toe the line in all these weird ways that have nothing to do with safety.
(The seating thing is an ongoing thing they bring up at the house I am staying at. They don’t like the house’s inhabitant. That’s what’s really happening. They have never given me crap about seating at my house which is far worse than the house I’ll be staying at. Also whenever offered seating they refuse it. Including at the house I’ll be staying at. There is more than adequate seating but they refuse to use it and then claim there’s no seating because they refuse to sit down.)
So there’s another agency I get services from. I am told they also have a problem with serving me at the house I’ll be staying at. They have always served me there before. I am told, again, the problem is the bed, and that if Howard doesn’t approve the bed, this other agency will not either. We have contacted the other agency, which has assured us that this is not the case whatsoever, they are fine serving me as far as they know, and if they weren’t okay with my bed, they’d just use the other bed in the house, which houses another of their clients who receives services from them with no problem whether my bed is there or not.
At any rate, it seems like people are playing games with me again.
And it seems like I am yet again being penalized for having developmental disabilities.
Because guess what?
When you sign on to work with people with developmental disabilities?
You’re signing on to work with people who take more time to process information, who talk around topics instead of being able to come up with the words for the main topic straight away (and in doing so take a lot more time to talk than usual), who have trouble with emergency speech if we have speech at all, who have trouble with language, who have trouble using the typical set of social skills, who have trouble with timing, etc.
And you know what the solution is not?
The solution is not to treat the person like their attempts to explain themselves or the barriers to access they face are wastes of time, like the only possible good thing they could be doing with their time is not wasting one second of yours. Where you, of course, get to define what’s a waste of time and what isn’t, what’s important and what isn’t, etc.
Because it’s disgusting to treat another human being this way.
I’m another human being. I’m not that different from you, no matter who you are. I have faults and I have good points. And I don’t deserve to be treated like this.
And yes, I know you think I treat you badly. I don’t. There’s a difference between being unable to do certain social skills the typical way and not giving a fuck and the difference matters. Especially when you’re paid money to at least act like you give a fuck whether you do or not.
Howard social workers have to serve clients who try to hit them.
I don’t try to hit my social workers, at Howard or elsewhere.
If they’re obligated to come and meet with and be respectful towards people who hit them, they’re obligated to do the same for me.
No matter how much my communication and language offend them.
By the way the more emergency speech I have, the worse my communication skills are and the more likely I’ll do things people find offensive. Same with the more people are in the room, the more stress they put me under, the more their “communication” is not really communication at all but more an attempt to tell me what to do and control my actions, etc.
There’s people in the world who can’t even imagine why I’m treated this way. They have trouble believing that there are people who see me as rude and difficult.
It’s mostly because they don’t come into interactions with me with the goal of getting me to do what they want of me. And they don’t expect me to be something I’m not.
And you know, after nearly 40 years of total anguish that I can’t be what highly controlling people want me to be, I’ve had enough. I can’t be what they want me to be. I’ve tried. I can’t. If they can’t deal with me as I am, they just have to deal with it.
No, that doesn’t mean I’m not accountable for my actions or that I’ll never change. It just means that I won’t change at the whim of people who only want me to change to make me easier to control.
I’ve had enough of that for a lifetime.
Being in the hospital sometimes makes you think about what actually matters in life.
And pleasing social workers is one of those things that you don’t want to spend the rest of your life trying to do.
If you can help at all especially if you’re in the Burlington area, please see my recent post (no, I don’t know where it is, but it should be easy to find) because I might need a lot more help than I thought I would if I end up being cut loose by lots of people whose job it is to actually help me. There’s a post with contact info for Laura. Contacting me won’t do much good. My abilities are still haphazard and I’m writing when I can where I can and not always reading.
Oh also they basically still won’t help me with anything, even if I jump through all their hoops, unless I carry out physical elements of the tasks involved. So I’d still need to be physically participating. Or else hiring a cleaning service, because everyone on disability can afford to do that! Also if I don’t hire a cleaning service or do my own cleaning or whatever, they can withdraw services at any time if they decide my apartment isn’t clean enough. So now I’ll get penalized in one more way for having the disabilities that Howard exists to help people deal with, and that Howard has been helping with for most of the pas 13 years. Because I can neither do these things, nor afford to hire someone to do them. (They know I can’t afford it yet they keep bringing it up.)
And that’s just one piece of the tangle. It’s exhausting just to think about. Please don’t write me “easy” ways this could all happen. If you have actual ideas write to Laura. I’m exhausted and it’s gonna be hard enough recovering from this hospital stay without additional crap to deal with and think about, whether that’s agency BS or other things. And sometimes even the most well-intentioned advice is way too much to deal with.
Anyway this is pretty naked cognitive ableism. That’s what it is when you tell someone that access doesn’t matter, understanding the way their communication works doesn’t matter, and every topic that matters to them is a waste of your time. I have developmental disabilities. This isn’t going away. There seems to be a whole lot of that sort of wishful thinking going on around here — “This isn’t convenient, so maybe it’ll disappear if we make Mel feel shitty enough about it being attached to hir.” Also a lot of old=boys-network-style corruption with social service agencies around here. Like the time (maybe 7 years ago?) I and some other people stood up for my right to get a life-saving treatment I was more than qualified for, at the hospital, and my Howard case manager after it was over chastised me for “jeopardizing Howard’s good relations with the hospital”. Yes, she actually said that, and that was one of the better social workers I’ve had. And that factors into how all these agencies work together, too.
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.
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.
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.
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.
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 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.
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.
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 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.
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.
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.
The most common treatments for a thoracic compression fracture are: pain medications, decreasing activity, and bracing. In rare cases, surgery may also be necessary.
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
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!
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 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.
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.
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.
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.
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.
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.
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 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.
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.
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.
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.
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:
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.
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…
I’ve probably said this before. But it’s so important I feel like it needs a standalone post.
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.
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.
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.
Normally I don’t have that much of a problem with clichés, depending on context. Quite often, something’s a cliché because it really is true, so it’s been repeated so often because it’s a reasonably accurate way to talk about reality. But then there’s this other kind, which grates on my nerves…
There’s two of them, actually, but they kind of work in parallel.
There’s the standard cliché platitude they give you when you’re in the hospital and you’re pissed off about something. it runs something like this:
“It’s so hard to come in here and have to give up so much control you normally have over your life, isn’t it?”
Well yes, and no.
Yes, the hospital takes control away from you in ways that are completely unnecessary. Like, things where there’s no actual reason for you to give up control. And where giving up control can be not just annoying, but dangerous. But that’s far from the only reason a patient in the hospital might be pissed off at the hospital. And they try to make it sound like it’s all a personal problem, with a personal solution. And that solution is to give up control over your life gracefully, even when it makes no sense to do so.
I encountered one today that I hear less often, but that seems to stem from the same basic source, and have the same basic problems to it.
I have a staff person who’s leaving. She’s worked for me for longer than five years and knows more about my care than either me or my case managers. She does work that technicallly the case managers should be doing. They sometimes call her a third case manager. But in reality they seem to have very little idea the sheer amount of work she does, and knowledge she has.
Anyway, I am very concerned about the way management seems to be handling her leaving. Normally when a regular leaves, especially someone known to be knowledgeable about a lot of things, their last month at the least, is filled with training and searching for replacements. That does not appear to be happening. She is not getting the kind of leaving that a regular staff without her degree of knowledge gets, let alone one with the knowledge she has.
I confided my nervousness in someone.
They said, “Change is always hard.”
That is not what is going on here.
I am more prepared than most people for the turnover rate in this field. I have felt lucky the last several years to have staff who lasted for months or years. Dave Hingsburger describes the turnover in the DD field as “Thursday” and he’s right.
I have learned to balance everyday emotional connection with professional distance, so that I don’t feel hurt on a personal level by staff changes. There’s people I’ll miss more than others, because I’m human and so are they. And I will miss Hallie a good deal. Just as I miss Zack and Rick. There’s some people you do form a connection with. But it’s a paid relationship, not a friendship, and you forget that at everyone’s peril. Pretending it’s a friendship hurts everyone.
But at any rate.
The problem isn’t a personal connection I’ve formed with Hallie.
And the problem isn’t that change is hard.
The problem is that every time Hallie even goes on vacation, I end up with some kind of health crisis. And management at Howard Center doesn’t prepare either me or other staff for the sheer amount and kind of work required to make up for what Hallie normally does.
Just as an example, last time she was on vacation, there was a doctor’s appointment. And there was something urgent that needed to happen before the appointment — some blood tests. I texted my case managers, and was basically told to handle the communication with the doctor’s office myself (something I can’t do), and otherwise to just wait until the appointment to get the blood tests (which defeats the purpose of having the results of the tests available by the time of the appointment). And the whole thing was said in a casual manner, as if I hadn’t just been hospitalized and wasn’t about to be hospitalized again for problems the blood test was testing for.
If Hallie had been there, she’d have been in contact with the doctor’s office, and would’ve immediately taken me for the blood test. Things would’ve gotten done. But she wasn’t, and they didn’t. And even the doctor’s appointment was a mess because of lack of preparation.
And that’s just one example of what can go different.
She’s leaving for good now.
The case managers have not spoken a word to me about her leaving.
They apparently plan to put me on the “floater model” so that I won’t have a regular staff person at all. Which for someone with my degree of medical issues, is a disaster. I need someone with a stable level of knowledge about how my body works, not someone who changes every month.
Nobody asked me.
They never do.
I wouldn’t have even known if Hallie hadn’t told me. Either about her leaving or about the floater thing.
They’re not training replacements. There won’t be a replacement. I was not asked or even consulted about what I thuoght was a good idea.
Major things are going to change.
They want this to happen.
Everything they do lately seems to be an assertion of their power and control over my life.
It reminds me of this chart, modified from the beginning of Behaviour Self! by Dave Hingsbuger:
Behavioural language of person with a disability
English language translation of behavioural language
I want control.
Spitting out food
I want control.
Kicking the furniture
I want control.
Swearing at staff
I want control.
I want control.
Refusing to participate
I want control.
Care provider lingo
English language translation of care provider lingo
I am concerned about your behaviour.
I want control.
This programme is for your own good.
I want control.
You need to learn to be appropriate.
I want control.
Locking you into time out is helping you.
I want control.
I’m sorry but because of your behaviour you have lost your commmunity outings, family visits, favourite foods, favourite television programmes, access to your bank account, visits from your boyfriend, access to an advocate, the right to vote at house meetings, access to the telephone, all of your civil liberties and any personal dignity you have left.
I have control.
This kind of power struggle is going on right now, but nobody will acknowledge it. But they are finding every possible way they can manage, to tell me they are the ones in control of my life.
And this kind of loss of control is a huge problem. Not a platitude. Not something that it’s reasonable to adjust to. Lacking control in the ways I lack control over my life, in the ways people in the developmental service system lack control over our lives, is another one of those little crimes against humanity that gets overlooked because everyone accepts it as normal.
So no, I’m not gonna accept this gracefully.
I’m not gonna accept it at all.
And that’s not because I have a character flaw that prevents me being gracious and accepting my fate and all that. And it’s not becuse I have trouble with change.
It’s because I have enough normal human reactions left in me that it bothers me to be treated as subhuman, and to see other people treated as subhuman. (I know if they’re doing something to me, they’re doing it to others. They’re not as individualized as they make themselves sound. Most of my problems with them come down to human beings not being plug-and-play.)
And I’m getting really tired of Howard Center treating me like there’s something wrong with me for wanting the same control over my life that everyone deserves. The kind all of them have and would be furious to have even an inch of it taken away.
I’m actually becoming a lot more medically stable. I’m getting to where I can finally do a few things that aren’t directly related to medical problems. In the past, my feeling better combined with Hallie leaving would mean that they were supporting both me and Hallie in getting ready for Hallie to leave. As in, even just on a practical, logistical level, they would be helping us both prepare and vet new staff.
That’s not what’s happening.
Yet in their interactions with me these days, everything seems to translate to “I have control.”
People shouldn’t get used to being treated like this.
This is a series of graphics promoting the Disability Integration Act, an important piece of legislation in the United States right now, that is not getting anywhere near enough support. From the Disability Integration Act website:
The Disability Integration Act (DIA) is civil rights legislation, introduced by Senator Schumer in the Senate and Representative Sensenbrenner in the House, to address the fundamental issue that people who need Long Term Services and Supports (LTSS) are forced into institutions and losing their basic civil rights. The legislation (S.910, H.R.2472) builds on the 25 years of work that ADAPT has done to end the institutional bias and provide seniors and people with disabilities home and community-based services (HCBS) as an alternative to institutionalization. It is the next step in our national advocacy after securing the Community First Choice (CFC) option.
Credit for most of these goes to Cal Montgomery. His dogs Murdo and Erastus are featured too. Image descriptions are in the alt and description tags, the captions contain my personal responses to each graphic.
What I like about these is they show how simple and normal it is, what disabled people want. And they have adorable animals on them, and draw parallels with the actual lives of the animals, and people care about animals. They might see things about disabled people they wouldn’t otherwise see without the analogies being made. For real.
But seriously my favorite is the one about being able to poop whenever I want. That one really encapsulates why it’s important that I stay in my own home, and why making me move to someone else’s home is unreasonable, cruel, criminal, and a whole host of other choice words.
And yet disabled people and elderly people are expected to not only accept restrictions on our freedom, but to do so gracefully and without complaint. In fact, the more readily we accept these things, the more we are praised. And then we lose our freedom.
And usually we die faster too. Not that anyone notices. They think we die because we’re elderly or disabled. Actually, lifespans (along with various other measures of physical and mental ability) for various disabilities have had to actually be updated over the years entirely because of fewer of us living in institutions. Institutions kill people faster. All institutions, whether large state institutions or small nursing homes. They reduce our lifespan and nobody notices or cares. That’s not the only reason they’re bad, but it gives the lie to the idea that they’re really there to “protect our safety”.
There is nothing that happens that is good in an institution that can’t be done, and done better, outside of one.
There is a lot that happens in institutions that is bad and doesn’t need to happen at all.
There is nothing that happens in institutions that is special to institutions, good, and requires an institution in order for it to happen. Anything you hear different is a lie used to keep institutions open.
Institutions are our modern equivalent of Victorian workhouses.
Workhouses were institutions for poor people. Think the sort of thing Charles Dickens wrote about. They had terrible living conditions and people died in them. Many poor people would rather die than go to the workhouse, just as many disabled people would rather die, live on the streets, or go to jail than end up in an institution. People considered workhouses necessary. People considered workhouses natural. They were neither one. These days, people consider workhouses an atrocity and a thing of the past.
But we still have institutions for disabled people, and they are everywhere. Some of them are large and obvious, others are hidden in plain sight. But all contain the same thing: A power structure that puts administrators on top, direct support staff in the middle, and disabled people at the bottom. If you want to know how institutional something is, follow self-advocacy leader Roland Johnson’s advice and ask the question “Who’s in charge?”
Also, anything that requires a disabled person to move out of our own home — even if it’s “just” moving into the home of an existing staff person — and gives no option for the disabled person to get the same help in the home we already live in, shows that something is institutional in nature. Even if it’s entirely “community-based” otherwise. Real community-based services let you live wherever you want to live.
And there are institutional-style services that masquerade as community-based services and get funding through home and community-based services (HCBS) waivers. Even some that let you stay in your own home. If living in a system seems more like a dystopia than it ought to, chances are thre are at least institutional elements. It’s plenty possible to have an institution where each person lives in their own home but it’s otherwise run like any other institution.
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.
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.
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.
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.”
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.
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.
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.
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.
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.
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.
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.