Posted in Developmental disability, HCBS

Enjoying something doesn’t make it okay.

Nor does it make it okay to hurt someone because they enjoy what they’re getting to do while you’re hurting them.  (Note:  Throughout this post, remember that anything that happens to me is happening to other people, and that’s one of the reasons I write about these things.  And as usual I’m not asking for anything that any other client doesn’t deserve as well.)

I had a recent and very surreal meeting with some people from Howard Center.

One of the many surreal moments came when Lauratried to bring up the issue of medical neglect within the recreational services I was getting.  I was part of a community garden.  I needed help maintaining my plot.  I could do some things but not others.  Anyway, they basicaally made me do things a person with severe osteoporosis and autonomic dysfunction should never be made to do, with regards to bending, lifting, and heat exhaustion.

The woman from Howard’s response was a bewildered “But I thought Mel liked gardening.”

Yeah.  I like gardening.  I don’t like bending clear to the ground with a stress fracture in my vertebra and recently healed rib fractures all over the place.  Nor do I like not being able to take breaks to avoid heat exhaustion without all assistance with the garden stopping for the day.

And yeah I actually did enjoy getting on the ground and getting my hands in the ground and all that.  Even when it was bad for me.

It doesn’t mean that what they did to my body was okay.

cropped-512-gardening-02.jpg

That is a picture of me doing something I loved doing and was proud of.

That is also a picture of me being forced to do something in a way that was physically dangerous to me.

These things are not contradictory.

In fact, it’s very common in human services for them to go hand in hand like this.

The fact that I enjoyed gardening doesn’t make it okay for them to insist that I garden in a way that’s unsafe2 for me or get no chance to garden at all.

Actually, the fact that I enjoy it makes it worse that they did this.

Because they can use what you enjoy in order to get you to do things the way they want you to do them.  Even at the risk of great harm to yourself.  Because you’re way more likely to agree to do something like this if you enjoy the activity in question.

So.  No.  My enjoying it doesn’t make what happened okay.  It makes it worse, if anything.  You shouldn’t have to risk broken bones and heat exhaustion to get any chance at all do things you like doing.  But that was the choice I was given.  And it’s not okay.  It’s far from okay.

Real Social Skills has a good post on a related topic (which I can say from experience with behavior mod, is true even when you do enjoy it, it can still be harmful):  Appearing To Enjoy Behavior Modification Is Not Meaningful


1 Laura is:

  • My durable power of attorney for healthcare
  • Frequently my cognitive interpreter at meetings
  • Someone who helps me advocate for myself and is much more effective at it than I am
  • My ‘second mother’ (and eventually will legally adopt me), has served in a semi-parental role since I was 17.  (Doesn’t replace my parents, but has helped them out a lot.)

So she’s there at a lot of important meetings.  One of the most important things she does for me is cognitive interpreting:  She helps me understand what other people are talking about, and helps them understand me even at times when I’m unable to get language across.  This is a form of interpreting that most people don’t even know exists.  Sometimes also called English-to-English interpreting when it happens in English.

The fun part is when she says what I’m thinking, I verify that she’s indeed said what I’m thinking, and she’s told that she couldn’t possibly know what I was thinking because the other person couldn’t tell what I was thinking.  If the other person could tell that well what I was thinking, I probably wouldn’t need a cognitive interpreter so badly.

2 Because people seem to use ‘unsafe’ to mean anything from dangerous to uncomfortable these days, let me clarify that I mean dangerous.  Heat exhaustion is dangerous, especially when you have autonomic dysfunction.  Broken bones are dangerous.  Broken bones when you have adrenal insufficiency are especially dangerous.  This wasn’t subtle.

Posted in Being human, death, Developmental disability, medical

Why I’d sometimes feel safer dying on a street corner than going to the hospital.

The IV pole in my hospital room during the stay described in this post. I spent days just staring at it making absolutely no sense of what I was seeing, but I must have snapped a picture of it at some point.
The IV pole in my hospital room during the stay described in this post. I spent days just staring at it making absolutely no sense of what I was seeing, but I must have snapped a picture of it at some point.

The thing is, on a street corner, at least someone would see what was happening to me.  

(TL;DR summary at end of post in bold.)

People have this idea of hospitals. You go to the hospital and you are safe. You are looked after. Someone is taking care of you. Someone is watching to make sure you’re OK. And if you’re not OK, someone will at least try to do something.

And that’s how it sometimes goes. That’s how it has sometimes gone for me. I am not going to say I have never had a good hospital experience. I am not going to say that there are not wonderful people going way above and beyond the call of duty, working in these hospitals. Often people working thankless jobs for long hours with little pay. And still dedicating a lot of their time to try and do their best by their patients. So don’t get me wrong, I am not saying that the image of what a hospital can be at its best never happens. But there’s a dark side and I have to talk about that.

See, sometimes there are patients who don’t matter. I have been a patient who doesn’t matter. And if you’re a patient who doesn’t matter, and you are in a ward where it is OK to abuse or neglect patient who don’t matter, and you are extremely sick, you will be lucky to get out alive.

I’m a patient who doesn’t matter for a lot of reasons.

I am on a feeding tube, which already means to many medical professionals that I am dead. I am maybe physically alive to them. But to many medical professionals, and I have heard this directly, once you have tubes or a trach or anything along those lines, people will see you as a corpse who happens to be still a little too lively. Or they see you as just a step away from death waiting to die.  Either way, not worth putting the time and energy into treating like a regular patient.

I also have a developmental disability which means I am not entirely human.

Most of the time I can’t speak, and that only adds to my inhumanity.

I am in so many ways an unperson.

There are other things that factor in, to larger and smaller degrees. There is everything from the way I interact socially, to the fact my gender can look ambiguous, to being fat. Lots of things add together big and small.

But they all add up to one thing: I am an unperson.

In the eyes of a lot of people, I am not a human being.  Iam somewhere midway between corpse and object and eyesore. Or even just a nuisance where my existence as a living being is an actual annoyance to some people. And they would just rather I stop annoying them.

I am not saying that all people see me that way. But it doesn’t take a lot. It just takes the wrong people in the wrong places. And I have been in the wrong place at the wrong time way too many times.

So that means I’ve had experiences like the following:

I have gone to the hospital for aspiration pneumonia. I am unable to eat and have been for a while. I try to tell them that and they ignore me. They tell me people get pneumonia without eating all the time.

I get very sick from the combination of antibiotics they’re giving me. I began vomiting uncontrollably.

I have a few things to make this extremely bad. One of which is a neuromuscular condition that makes you weaker the more you use a muscle. This is violent full body vomiting. And the more it happens the weaker I get.  I also have adrenal insufficiency, which means any illness will be worse, will drain your cortisol, and low cortisol causes its own life-threatening set of problems.  Including full-body muscle weakness.

I am on a cardiac ward,. This is called being overflow. Overflow means you’re a patient with one thing where you get put on a ward for another thing.  Because they don’t have beds on a ward with whatever specialty you’re supposed to be undder.

So I’m overflow on his cardiac ward. And cardiac wards are generally pretty quiet places.  The culture of this ward is they like it quiet.  At all costs, it turns out.

So their response to my vomiting is to shut the door and get my roommate out of there and ignore my call light.

But I am hitting the call light because I am getting weaker.  I am unable to clean myself.  I am shitting the bed.  I’m having trouble breathing and I am getting so weak I will soon be unable to move.

The first couple times, they’d answered my call light. But they stopped. And I thought the ward was just busy. Because one ward gets busy sometimes. You don’t get your goal and answered for a long time because there’s something else happening more important. And it was a cardiac ward, so I thought maybe someone having heart problems.

I know there was concern over what was happening to me. But it was not coming from the hospital workers. The nurses were ignoring me. The doctor said is his official position that he would not treat anything about pneumonia because pneumonia was all I’d come in for.  I didn’t know any of this until someone told me later.

See, my friend was not able to visit me. But she sent over one of her caregivers. That caregiver had been through cancer. She’d been in that hospital and had known many people who’d been in that hospital and had seen the worst of that hospital. And she came in and apparently what she saw was terrifying.

Every nurse on the ward was aware my call light was going off. Everyone knew why. I was vomiting very loudly. It was audible from the hall. My door was shut. No other lights were going off. Nobody was busy. Everyone was ignoring my existence in a very pointed way.

So the caregiver apparently started throwing my door open. And the nurses would come and shut it without saying a word. And she’d throw my door open again. And the nurses would come and shut it again. And this back-and-forth went on until the only part I remember happendd. Which is the caregiver shouting at the top of her lungs, “If you kill her, I will have every lawyer in Burlington down on this place!”

I didn’t realize this was about me. I just remember hearing it. I was at that point dealing with the combined effects of the pneumonia, the weakness from not having had a square meal in weeks already, the antibiotics and their side effects,  untreated congenital myasthenic syndrome, and untreated adrenal insufficiency.

So I could barely move. I remember thinking this out:   I was alone and I knew I was alone.  I needed to use whatever strength I had to get into a position where I was the most likely to survive. And that meant in that moment, climbing into a very odd position on the bed.

So the hospital bed was… like a hospital bed. The top of it was tilted upward. So I climbed onto that part. Just the top of the bed. And then I curled myself so that my legs were it one side of the bed, my torso was parallel to the top of the bed with my back facing the top of the bed, and my head was angled downward. So when I became unable to move, the vomit was most likely to pour out of my mouth not end up my lungs if I could help it.

This is not a position that anyone who is in a hospital within reach of help should ever have to be in. What I had to do, and the resources I had to muster, are far more typical of someone lost in the desert using the last of their strength to preserve their energy for rescue.

There’s a show called “I Shouldn’t Be Alive” where people talk about exactly these situations. The difference between the survival stories on that show and the survival stories I could tell, is not a difference in the physical and mental lengths you take to survive in situations where it shouldn’t quite be possible. The difference is their survival stories always have that happy ending that starts in the hospital. My survival stories always start in the hospital.

And while I am in the hospital I am enduring what these people endure in the desert, in the middle of the ocean, in remote wilderness places where there is no help. And yet this is the closest I can find my experiences anywhere on TV or anywhere else. That should say a whole lot about how people like me experience hospitals.

So they did as far as I know pretty much leave me to die or survive on my own steam. Doctors have said many times I should not have survived this. Doctors have said many times that I needed to be in the ICU. I’ve been told a lot of things. But I did survive it.

But it was a grueling, traumatic, dangerous, and totally unnecessary experience. That particular hospital stay is one of the worst experiences I’ve ever had with medical care.

It was not just being left for dead. It was this long, long period where I was alone in a way I have rarely been alone. The only time I saw another human being is when they came in to change my IV bags. And I was adrift and did not know what was happening. I didn’t even know if I was dead or alive.

I was very severely delirious. I was in more pain than I can ever remember being in. I was having a kind of seizure that meant that even in the absence of all these other thing it made time crawl, time just stretched out into eternity. So I pretty much felt like I had discovered the ninth circle of hell from Dante’s Inferno or something and it was located on that particular floor of  that particular hospital. When I even knew I was in the hospital.

After that experience with the curling up on the bed that was really the last lucid moment I remember. I remember wondering it one point whether when I died I was going to be aware I was dying. Because I knew that was happening. I know when Death is hanging around my hospital bed.  It’s something you learn to notice if you encounter enough. And Death was really my only companion for a lot of this experience.

So I got weirdly friendly with Death. But other than that it was like I was living in some kind of nightmare that never ended. The first thing I remember after curling up like that is the light being different, day being different I guess, and not even connecting with who I was, where I was. I thought there little dapples of sunlight all over the room. I thought I was the dapples of sunlight.  I thought that’s what I was, I didn’t know I was physically there. And I was all in pieces all scattered all over the room.

Pink insects ate my eyelashes. The clouds took on the form of ancient mythological creatures. These empty empty people showed up — gray black and white images of people that would appear in front of me and carry emptiness with them.  They vanished and carried even more emptiness when they did. There was a grid that went through the entire hospital of all the people who died there and were stuck on the grid. They invited me to join them. I didn’t know sometimes if I’d already died and joined them. A garden trellis appeared on the back wall one of the rooms.  Vines would go down in and out of it and back to it and down in and out of it and back to it all night long, covering me and uncovering me, endless time, endless pain.  All these things, disjointed, not coherent.

These things don’t sound like a lot. But they came with the most excruciating pain and the sense of time passing as slowly as possible. If you can imagine when you have really bad insomnia and you can’t sleep but you can’t really concentrate on anything either, so you’re just lying there with time seeming to go by like every second is a month. Like that only more.  And I was in that hospital for five weeks.

And not all of my experience that hospitalization was as bad as the start. In fact some of the neglect and abuse stopped due to other people advocating for me. But there was a long period of extreme neglect. And it was brutal.

And when I was able to think enough to make these thoughts, I was very aware of some things.

  • My life was in danger.
  • Nobody there cared that my life was in danger.
  • Because I was in the hospital people thought I was safe.
  • Nobody would know I was just in a room by myself without even a monitor.

Like usually they at least least have a pulse ox on you or something. They didn’t even have that.

And I was unable to do much for myself.  Being punished for that.  At one point they actually said that because I had a developmental disability, if I got used to shitting the bed I’d never want to use a toilet again.  I can’t fathom what world exists where shitting the bed is preferable to a toilet.  But that’s what they thought of me.

And I was being left alone for every single hour out of the day that did not involve changing an IV bag. And the people came to change the IV bags did not interact with me. Nor did they do anything check on my status.

So this was a terrible experience. But it was also an experience where I knew I was alone and I was in danger I rarely had means of getting word to anyone.

And I was in a place where people think you’re safe. So nobody would think that nobody was looking after me. Nobody would think that nobody cared that I hadn’t eaten. Nobody would think that nobody care that I got so weak I could barely breathe sometimes. Nobody would think this was happening or even that was possible for this to be happening.  And there’s so much more to this story than I can even tell in one blog post.  It’s actually much worse than I’ve described.

Which is exactly why I’ve said that there are times when I think I would be safer dying on the street corner then I would be safe in the hospital.

And I think that is true for many disabled people and many other people who are part of groups that are not considered fully human.

But people want so badly to believe that hospitals are a place of love and caring and safety.   People don’t want to hear this is a reality for the unperson patients, the unwanted patients, the annoying patients, the difficult patients, anyone who gets labeled such.  Which is often disabled people.

And yet if I talk to people who had to be in the hospital, especially people don’t matter to a lot of people with power, I hear stories like this one and worse all the time. And disabled people of all kinds have tons of stories like this and worse.

When Esmin Green (a black woman with a psych label and therefore didn’t matter to people on so many levels at once) dies in a hospital waiting room in full view of patients and staff and security guards for an hour and it’s all caught on camera, what the hell do people think is going on?  She, like all of us, was an entire human being and they ignored her humanity until she died in full view of lots of people who could’ve done something.

This happens.  This happens all the time.  It’s not just a matter of funding or something.  It’s a matter of certain people’s lives are not valued and certain places have cultures where that is okay.  There are cultures in some medical establishments where doctors and nurses abuse or neglect people they consider not really alive, not really people, or too annoying.  Sometimes this is as simple as choosing a blunter (more painful) needle to inject someone with.  Sometimes it’s as huge as leaving people to die or even doing things to hasten death.

This kind of shit happens all the time.  Listen to the stories told by those of us who’ve actually survived such ordeals.  Every single one of us is a real person.  Every single story we tell is important.  Even if it flies in the face of everything you want to believe about the safety of hospitals and the benevolence of the helping professions.  What you want to believe doesn’t change that people are being made to needlessly suffer and die for not being the right kind of person.

TL;DR:  Some people — often disabled people, poor people, people of color, and other people who can easily become people who don’t matter — experience severe medical discrimination in hospitals.  To the point that we may be simply left to die, or given the minimum possible medical care.  We may experience severe abuse and neglect in what is meant to be a place of safety.  Some of us survive it.  Some of us die.  Some of us feel that we’d at times be safer dying on a street corner than dying in a hospital.  Because in a hospital, we’re hidden in a room where nobody can see what’s happening to us except the people neglecting us.  At least if we died on a street corner, someone might see what happened.  Maybe.

Posted in Developmental disability service system, HCBS, Problems and solutions

Developmental Disability Service Agencies: Can’t vs. Won’t

Photo on 5-12-18 at 5.23 PM
Mel holding up a prescription bottle of hydrocortisone, absolutely necessary to continued survival.

In my post on why Vasili Arkhipov should matter to everyone (and especially people in human services sometimes), I touched on what happens when my developmental disability service agency confuses what they can’t do with what they refuse to do.

I have a concrete example.

I take a particular medication four times a day.

This is a medication that is vital to my survival.  I don’t mean indirectly.  My body does not make even a little bit of a particular hormone that is necessary to survival.  Without getting a replacement, I will die.  There is no way around this.

There have been many complicated things preventing me from getting the right amount of this medication, throwing my health into jeopardy.  Some have to do with the agency and some don’t.

But my endocrinologist recently got angry about something the agency was doing.  One of the doses of the medication has to last me overnight.  It has a certain time it stays in effect.  You can’t change this time by wishing really hard or something.

So there was a staff shortage, and they started sending people earlier and earlier at night.  A medication that was intended to be taken at 9 pm started happening as early as 5:30 or 6 pm instead on days when it was more convenient to the agency.

I started waking up with trouble breathing, and having to take more of the medication to breathe through the night.

Needless to say he wrote an order saying the nighttime dose needs to be as late as possible.

But anyway, we recently discovered a lot of things that were going wrong with this medication.  Everything from the way my stomach was absorbing it, to the way my body seemed to be using it, to other conditions being affected by it, to the timing.  So we had to start over.  By start over I mean go through a long grueling period of figuring out how much I needed by chest port, resolving as many digestive issues as we could, working out dose conversions to my still-wonky guts, and coming up with a dose and timing schedule that will get me through the day without too many hiccups or surprises.

In order to do so, we had to throw out my agency’s schedule entirely.

See, before this, I was only getting the medication during the existing staff shifts when the people from the agency were at my house to administer medications.

And that didn’t turn out to fit the rhythms of the way this hormone works in anyone’s body, let alone mine.  Like not even a little.

But we had to go with what my body would actually need.

So now I have a medication I have to take four times a day, and every single one of those times is outside of the times when I have staff over to help me administer things.

Self-administering medication without, at least, prompting and checking from an actual human being, is not something I can do.  I know this.  I used to have an app designed specifically for people with brain injuries and other cognitive disabilities that wasn’t good enough to nag me into doing shit like this.

Mind you, I’ve downloaded Medisafe onto my phone.  But that’s a backup.  It’s not sufficient.  Medisafe alone, even with the thing where it texts someone if you don’t take it, isn’t enough.

And of course when my case managers come by, they’re all cheerful to tell me about how their boss told them about Medisafe.

But anyway, they were also just as eager to tell me that they as an agency were not capable of giving me the support to self-administer this one medication.

Support would, at minimum, consist of getting a phone call four times a day.

A fucking phone call.

That’s all.

Not someone to give it to me.

Not someone to physically be in the room.

Just someone to call, get me to initiate the whole process of doing it, and then verify that I’d done it.

They told me this is not possible.  That they can’t.

I told them that I understand they think they can’t, but that I need them to know I’m fully aware that they actually mean they refuse to.  Maybe not these case managers personally.  I don’t know who.  But failing to provide even minimal support for a life-saving medication is a refusal, not an impossibility.  And I refuse to let them get off the hook for saying it’s just impossible for them to support me on this.

They do more at other times than it would take to do this.

They just — someone, somewhere, in the agency — don’t want to provide this kind of support.

I will come up with other options, of course.  I already am.  I told them that if they refuse to support me on this then they need to help me find those other options at the very minimum.  But that it’s absolutely, absolutely refusal.  It’s not can’t, it’s won’t.

Agencies love to come up with random reasons they can’t do something when they really mean they refuse to, or don’t want to, or just plain won’t for whatever reason.

My agency seems to love to do it by reflex.  Often the very first thing I hear when I ask for help with something is that it’s impossible.  Even if it’s something like “Can someone plug my cell phone in at the end of the shift?”

At any rate, it’s really wonderful to hear how person-centered this agency’s services are these days.  You’d think there wouldn’t be anything more person-centered than figuring out a way for someone to get life-saving medication at the times their body needs it.  But person-centered appears to just mean I get the option of having a glorified social media profile stuck into my file, not that anything I get in the way of services actually revolves around what I need or want in life.  Because that’d make sense.

Make no mistake about it, though:  This is not something they can’t do, this is something that at some level they are refusing to do.  Because the agency is set up for the convenience of the agency, not for the convenience of those of us it claims to be there to help.  Which has results for us that range from annoying to life-threatening.

I agree with a friend’s assessment of the situation:  While I’m not in a congregate care setting (a place where lots of disabled people live together usually not by choice), in practice this is “sort of scattered-site congregate care”.  This is what agencies behave like in more traditional institutional settings, they just get to pretend it’s not happening like that if we all live in individual apartments of our own.

I don’t think Vasili Arkhipov would’ve said he couldn’t try and veto the captain’s order to nuke the Americans…


By the way, I do have every strategy currently possible in place for dealing with this situation.  I have stopgap measures.  I have people on my side.  I’m gonna need something more than this eventually.  But I don’t need suggestions or anything, so please don’t.