

Accessibility is a waste of time.

I was told this today.

Cognitive accessibility is a waste of 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.

i’m a human being. FFS.

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

They’re withholding access to food.

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


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

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

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

So basically it’s easy.

And Howard won’t do it.

They refuse to do it.

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

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

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

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

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

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

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

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

CASE MANAGER: That means they didn’t agree…

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

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

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

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

And I’m not okay with that.

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

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

I can’t sustain that.

I’m getting weak.

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

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

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

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

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

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

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

Nursing homes, the VNA, anywhere they can manage.

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

Everything else is excuses.

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

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

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

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

Except, except, to check the mail.

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

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

It’s entirely up to my case managers.

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

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

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

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

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

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

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

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

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

I’m fucking eating and i’m hungry.

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

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

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

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

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

That’s when I’m at my best.

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

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

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

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

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

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

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

They are not feeding me.

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

Nobody else needs to change anything anymore. Only them.



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

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

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

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

And they do it all the time.

And they’re doing it right now.

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

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

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

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

I’m getting really tired.

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

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

Howard doesn’t want me.

That’s what this is about.

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

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

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

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

I’m in a holding pattern.

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

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

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

They can pass me around in circles.

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

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

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

Their endgame is diabolical.

Understand, also:

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

Writing this is exhausting.

Exhaustion is not safe for me right now.

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

I’m getting more wiped out.

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

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

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

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

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

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

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

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

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

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

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

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


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.



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






A bad agency will do the opposite.







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



But it is something.

And I was able to say it.





Best hashtag ever: #GetYourBellyOut

#GetYourBellyOut is the best hashtag ever,

I’d better backtrack.




This moment of comic relief came at an unexpected time.

I had defined my first goal as survival.

I meant it.



Surprise Administrator: Survival isn’t a goal.
Laura: Yeah it is!
Surprise Administrator: It’s a vague goal.






So this is the picture I posted to #GetYourBellyOut:                                               








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

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

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

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

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


To be very, very clear.

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

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

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

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

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

So again.

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

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

Posted in Developmental disability service system, HCBS

Clichés & Platitudes & Control & Change

word cloud, largest words are want, control, and language.
Word cloud based on the “translation” chart by Dave Hingsburger further down this page.

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
Hitting out I want control.
Spitting out food I want control.
Kicking the furniture I want control.
Swearing at staff I want control.
Face slapping 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.


Disability Integration Act graphics that agencies could stand to take a look at too…

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:


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.

Picture: A brown tabby cat sitting on a chair. Yellow background, purple text. Words: Hi. I'm Abby. In my house, I can eat, drink, poop, play, and clean myself whenever I want. Humans want the same things.
This is my personal favorite, and is the reason that my own home is not the same as moving into someone else’s home, no matter how much my agency wants to convince me that moving won’t harm me and forcing me to move isn’t massively unethical.

Picture of a small brown house rabbit on the floor with some vegetables and a toy. Olive green ackground, black text. Text says: Hi. I'm Lily. I spent the first year of my life in a cage. It made me lonely and angry. I'm much happier now that I live somewhere I'm allowed to be free. Humans feel the same.
Not everyone knows rabbits don’t belong in cages, look up the House Rabbit Society if you want more information on that. Not everyone knows human beings don’t belong in institutions no matter what our disability is. Look up the Disability Integration Act for more information on that.

Picture of a brown tabby cat with white tuxedo markings. Purple background, blue text. Text: Hi. I'm Gallifrey. Listen... Cats don't belong in shelters, and humans don't belong in institutions.
Pretty straightforward…

Picture of a brown and black puppy greeting a new smiling human by licking him on the nose. Grey background, pink text. Text: Hi. I'm Erastus. The day I got to my new home was a good day. Tens of thousands of people with disabilities are waiting for the services to start new lives in my state alone. You can help.
This is horrifying but true. This is what I mean by forcing us not to live in our own homes is an ongoing, large-scale crime against humanity. I’m not making this up.

Dog lying on his back on the grass. Purple background, yellow text. Text: Hi. I'm Ersatus. I love my freedom. Disabled people love freedom too.
It’s amazing how many people don’t grasp this, or seem to think that disabled people ought to be okay with giving up freedoms other people would strenuously object to giving up. They act like it’s the natural order of things. There are entire groups of people who think it’s their job to persuade us to be happy giving up our freedoms. Who think that there’s something wrong or pathological or that we’re in denial about our disability or something, if we still want freedom. That we’re just being stubborn or otherwise causing problems, instead of naturally wanting what everyone else in our cultures gets. It’s like freedom for us is optional and it’s our job to “accept” that. Bullshit.

Picture of an elderly black and brown dog who is very cute. Yellow background, blue text. Text: Hi: I'm Murdo. I have lived with my human for 11 years. As I age, I want to keep living where I feel loved & comfortable. Humans feel the ame way.
This is a close second in terms of favorites.  People act like when people get older, they should be okay giving up their freedoms as well. This is just as much bullshit as it is when applied to disabled people. There is nothing about being old that means you have to leave your home. Nothing at all. No more than being disabled. This goes whether you acquire a disability or not as you age. Elderly people should not be forced out of their homes any more than disabled people should, nor forced to accept loss of freedom as the price of aging any more than it is the price of disability. The wholesale warehousing of elderly people is part of the same large-scale crime against humanity as the warehousing of disabled people, and is often done by the same industries.

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.

At any rate, all of this is very important, and I love these graphics.  And definitely tell people about the Disability Integration Act and give them the link to the Disability Integration Act website.  Which is







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

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

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



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.

Photo on 9-13-18 at 11.06 PM.jpg
You’ll pry my apartment keys out of my cold dead fingers.

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

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

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


Posted in Developmental disability service system, HCBS

Everyone talks about caregiver burnout.

And trust me, I know it’s a thing.



No matter how many reasons they may have for not doing so.

A caregiver can walk away from this kind of relationship.

I can’t.

I have no options for survival that don’t involve receiving a certain amount and kind of support.

So if I burn out.

I have nowhere I can go.

Nobody talks about that.  Or client burnout or whatever the hell you want to call it.

(Says the person who just had three staff in the room at once and wanted to scream.)

Photo on 9-13-18 at 10.40 AM.jpg
Not in a great mood.

Posted in Developmental disability, Developmental disability service system, HCBS

My assessment scores, for reference purposes.





So these are the scores I got in the different areas.


  • Communication: 1
  • Self-Care: 1
  • Self-Direction: 1
  • Community use: 2
  • Home living: 2
  • Health & Safety: 2
  • Leisure: 2
  • Social: 2
  • Functional Academics: 3

They then divide that into three areas:

  • Conceptual: 5
  • Social: 4
  • Practical: 7


Then you’re given a Composite Score that sums everything up.

  • Composite Score: 47













