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.
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.
Howard Center has several divisions. There is Mental Health, which it is best known for. There is also Substane Abuse. There is Children and Family. And then there is Developmental Services, DS for short.
I get services through Developmental Services, through a Medicaid waiver program called the Home and Community Based Services (HCBS) program. In the state of Vermont, to get developmental disability services you must have either autism1 or an intellectual disability or both, and have limitations in certain life skills.
So proving the autism diagnosis wasn’t hard, but they wanted a current assessment of my life skills. So I was 24 years old, almost 25, when this assessment was done. It was done using the ABAS, the Adaptive Behavior Assessment System, the “Adult Form, Rated By Others,” meaning that my staff person (who had worked for me for 3 years at that point and knew my skills very well) rated how often I could do a long series of tasks listed. She asked specifically about whether it should be as I do with or without assistance, and was told to rate me as without assistance so they could get a true estimate of my abilities. My case manager from Easter Seals was there in the room the whole time. I was too nervous to even look at the test so I just sat there doing nothing. The test basically asks how often a person successfully does a series of specific tasks, from always/often to rarely/never.
An important thing to understand about this test is that it is supposed to test your abiliities as they are applied to the real world. That’s why it asks how often you actually do these things. Because it’s not about whether you have a theoretical understanding of something, it’s about whether you can actually do it. At least, that’s how the test is meant to be applied. Obviously it’s subject to the interpretation of whoever’s filling out the forms.
So these are the scores I got in the different areas.
First are the scores in each specific skill area. These are out of a scale that runs from 1 to 19, with 10 being average, and 1 being the least capable in this area and 19 being the most capable.
Community use: 2
Home living: 2
Health & Safety: 2
Functional Academics: 3
They then divide that into three areas:
Conceptual has a possible score between 3 and 26, Social has a possible score between 2 and 51, and Practical has a possible score of between 4 and 64.
Then you’re given a Composite Score that sums everything up.
Composite Score: 47
The composite score is from a range of 40 to 120. My score is in the lowest percentile range for this test which is given only as <0.1. The numbers are meant to mirror the numbers on IQ tests, so 100 is average.
It’s also important to know that at the point in time this test took place, I was much physically healthier relative to now. The majority of the stuff I couldn’t do, that this test measured, was due to cognitive disabilities related to developmental disabilities. I did not suddenly and recently become unable to do these things because of physical illness or disability. I have been unable to do these things for quite a long time.
As far as how I see the accuracy of the test, I think it was pretty accurate. There’s only one area that I find misleading, and that’s the communication area. I got the lowest score possible for communication. This didn’t make sense to me, or to the tester given that she had a coherent conversation with me. But I asked my staff person what happened, and she told me that the test just happened to ask questions about the parts of communication that, especially at the time, I was the worst at: Small social nicety words.
So things like please, and thank you, and hello, and things like that. And while I’ve gotten better with those, at the time I really did never say those things to anyone. So she had to mark it down as rarely/never. So even though I was a writer, I got the lowest communication score it was possible to get. But I can’t say it was totally inaccurate, because for what it measured I really didn’t say those things. But it gives a very misleading idea about my communication skills, that the test didn’t even bother to clarify how well a person did things other than really basic words.2
The rest of the test just seems pretty accurate to me: Left to my own devices, I can do very little for myself.
The important thing here is that this was documented back in 2005 by Howard Center. As part of the intake process. So acting like I am suddenly capable of doing these things, or acting like my difficulty doing them is new and entirely due to physical disability, goes against stuff they have in their own files about me. I mean, in order to get into HCBS services in Vermont I had to prove both that I had a developmental disability of the sort they serve in Vermont, and also that it limited me in a certain number of life areas. And this was the limitation part. And it definitely showed that I was very limited in every single one of the life areas tested.
And there are specific reasons for that, but that’s a topic for another post. I just want to document the fact that my inability to do this crap is well-documented and was known to be related to cognitive developmental disabilities thirteen years ago, so none of this should be a surprise to anyone. Nor should the fact that skills training was tried extensively in California and didn’t take. And all the other things they used to know and have conveniently forgotten.
Also I hate assessments. They make me feel like a collection of deficits. It’s a very icky and medicalized feeling. Like having the important parts of you disappear like they never existed. No depth. But I’m glad I have documentation of this nonetheless.
1 By which they mean any label connected wth autism, so Asperger’s and PDDNOS count, unlike in some states. Which is not as much of a moot point as you’d think, because people still have old diagnoses from before the DSM-5, and also large parts of the world don’t use the DSM and have not merged all the diagnoses into one.
2 There’s a larger problem at work here that I don’t want to get too distracted by, but is huge: There’s an assumption out there that skills run in a line from basic to advanced, and that you have to have the basics before you can do the advanced stuff, and that everyone progreses by first learning the basics, then intermediate level, then advanced. And that everyone progresses along the same line, with the same set of skills, and so forth.
Which makes absolutely no room in the world for the fact that there are many people who learn skills in a totally different order. Or who can do something advanced but not the basics, like my friend who is severely dyscalculic and spent her childhood in remedial math because she couldn’t do arithmetic. Then a teacher found out she was obsessed with division by zero (which her teachers thought meant that she really didn’t grasp math) and told her to take that and run with it, and she reinvented the foundations of calculus. And got out of remedial math for good.
There’s lots of people who learn things in a different order. And there are actual disabilitis that cause a person to do something that seems advanced without being able to do the basics at all. This often confuses people. For instance, there are people with autism-related language disabilities that cause them to use very long words but have trouble with “simple” language. And the very long words convince people that they have no language problems.
So it’s actually totally in keeping with that kind of thing that I failed a communication test that tested “easy” stuff, at the same time I was writing long eloquent articles on the Internet. I really couldn’t do those “easy” words in conversation. So I feel like the test was accurate to the specific things it tested, but misleading as a test of overall communication because communication is a lot more than those supposedly “easy” parts.
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 Laura1 tried 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.
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.
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.
Exactly what it says on the tin. This is a guide for people with developmental disabilities in United States, receiving services under an HCBS (Home and Community Based Services) Medicaid waiver program. Which includes me.
There’s nothing wrong with protecting staff from on-the-job injuries. In fact that’s a good idea. But that’s not really what this is about in the first place. That’s just what they say it’s about.
Despite the fact that many people with developmental disabilities are physically disabled, my local agency does not like giving us help doing things we are physically unable to do. So they come up with a long list of excuses why it’s not possible for them to do those things for us. One of those excuses is staff safety.
I have severe osteoporosis, to the point I’ve actually broken a rib by sleeping on it wrong, developed a stress fracture in my spine without anyone knowing what precisely caused it, broken a hip, and broken so many ribs that x-rays and CT scans of my chest no longer include a number of healed rib fractures, just “multiple”. It’s ridiculously easy to break my bones. I also have congenital myasthenic syndrome, which means that my muscles, while capable of strength at their best, wear out and weaken more easily and unpredictably than average. The combination makes falls more likely and dangerous, especially when combined with an endocrine condition that can turn a broken bone into a life-threatening emergency and that can cause its own weakness once that happens. And there’s more, I just thought three conditions would be more than enough to get the point across. There’s years worth of documentation of these things and more, so my agency can’t claim ignorance. Especially since they go with me to all my medical appointments.
So there is a lot of bending, lifting, and basic physical work that I either shouldn’t be doing at all, or should be doing in a heavily modified fashion. I need the same precautions around certain activities that would be typical of an elderly person with unsteady balance and fragile bones. When I go out, I use a walker to get around because I fell too often using canes and crutches. The walker also makes it hard or impossible to lift or carry certain things, including other assistive technology that’s vital for me.
Anyway, the agency won’t let staff lift a messenger bag I carry with basic equipment I need for communication and feeding tube maintenance.
At first they wouldn’t even explain why. They’d just give it to me and insist I do it, no matter how I was feeling, no matter how unsteady it made me on my feet, no matter how much pressure it put on my muscles and joints, no matter how unsafe it made use of the walker.
When I finally started insisting on reasons, they told me it’s because staff can injure themselves carrying things and that they have a policy that staff are not allowed to lift or carry anything for clients, even messenger bags.
I asked what they do if the person really can’t lift the thing. They got a bit squirmy. Then they said they work something out that works for everyone.
They never did work anything out for me. They never even tried.
They did tell me that people injure themselves lifting bookbags.
Which I could believe.
But I have objections to this as their real explanation for what’s going on.
There’s another agency locally where every client is physically disabled. Staff for that agency are trained in safe lifting practices. I don’t mean lifting entire people. I just mean they are required to be able to lift at least a certain amount of weight, and they even have to pass a lifting test to be able to take the job. They have to both be capable of lifting a certain weight of object over their head, and be capable of demonstrating that they know how to do so safely.
On the other hand, this local DD agency just pretends there’s no such thing as safe lifting and that nobody needs to be trained in it. Nor do they provide equipment to aid in lifting if direct lifting isn’t possible. Not even people who work with physically disabled clients. Of which there are many, because many developmental disabilities have a physical component.
What also gets me about this concern for staff safety, though, is that there is no concern for my safety at all. They know precisely why it is unsafe for me to be lifting and working in certain ways. They know precisely why it is impossible for me to do certain things, and dangerous for me to do others. They know exactly what injuries to my body and even dangers to my life can result from the expectations they are placing on me.
Yet when push comes to shove, I’m the one supposed to be doing bending and lifting that will injure or harm me if I do it long enough, and staff don’t have to do anything. I’m sure that staff can be injured by bending and lifting, especially if they are not properly trained in how to do it. But the chances of me being injured, and injured more severely, are much higher. And nobody has shown any concern for what will happen to me if forced to do these things. Until I asked “What do you do if someone can’t do this stuff?” they didn’t even think about other solutions. And honestly they didn’t even think much about other solutions after that.
The thing is, the actual requirements of their job don’t extend only to helping us out with cognitive limitations. If we have physical limitations, they are required to deal with those. They can’t just pretend they don’t happen.
I think it would be terrible if they didn’t care about worker safety. But my gut tells me this has nothing to do with worker safety, because they don’t really seem to care much about that either unless it’s a handy excuse for something else they don’t want to do. And if they did care about worker safety, they would care about training every single worker in basic lifting practices. They don’t provide that training to anyone I’ve ever heard of.
I also find it telling that whenever it comes to a conflict between my safety and worker safety, worker safety wins out. Even if the situation is only a potential abstract danger to a worker, and has already proven itself an existing concrete repeated danger to me. Not that it should be a choice between either one. An agency acting properly would protect both its employees and its clients. But it’s interesting how no matter how physically fragile you are, it’s always better to them to endanger you than to ‘endanger’ a physically fit able-bodied worker by having them do something that ordinary people do every day on and off the job.
So basically if anyone’s body is gonna break, they want it to be mine or another client’s, as far as I can tell. At least that’s the story their repeated actions towards us spell out. And I am still convinced the concern for worker safety is mostly bullshit, or they’d be protecting them better as well.