Posted in Being human, Developmental disability, Developmental disability service system, disability rights, HCBS, Self-advocacy, Values & Ethics

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

Something I haven’t been able to say, but is finally possible to say pretty clearly and directly. Here’s a very simplistic way of describing how to tell a good agency from a bad one:

Insert people as staff or management or whatever other jobs there are.

See if they treat their clients better, worse, or the same just by being there.

I don’t believe in “good guys” or “bad guys”, let alone something as simplistic as being able to tell by what color hat someone’s wearing. But sometimes you have to simplify things to communicate them. Like most people, I like to think of myself as a decent human being. And here I am wearing a black hat. It’s my favorite of my own hats, like the ones I bought for myself. Most of my favorite hats are actually brown and inherited from my dad. Make of that what you will.

A good agency will, by the way it’s structured, encourage people to behave with respect, responsibility, and ethics.

A bad agency will do the opposite.

A bad agency will make it so that it requires a great deal of effort to behave like a decent human being even if you’re trying really hard to do so.

A good agency will make it so that the average person will go in and do better than they otherwise would have.

A good agency will make it so that someone going in with malicious intentions will find it hard to act on those intentions or last long within the agency if they manage it.

Put simply: A good agency will make it easy to be good and hard to be bad. A bad agency will make it easy to be bad and hard to be good. Good agencies bring out the best in people, bad agencies bring out the worst in people.

A very good agency will change many people with malicious intentions for the better, through means that are themselves good. A very bad agency will change many people with excellent intentions for the worse, through means that are ethically muddy at best and outright evil at worst.

All of this is simplistically worded. But hopefully you know what I mean. I’ve spent a long time struggling to find words for this. I’m still not there yet. Life is more complicated than a cartoon version of right and wrong. But a good place makes it easy to do the right thing and encourages everyone in that direction, and a bad place does the opposite. Even if it’s never that simple. Which, of course, it isn’t.

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

Because I’m getting sick of having to add disclaimers to everything I say about HCBS or medical services like “I know there’s good people here, but…” Of course there’s “good people” here. There’s every kind of people everywhere. But that isn’t what makes an agency good or bad. Also, I genuinely don’t believe in the existence of ‘good guys’ and ‘bad guys’ so all of this is an oversimplified way of describing things anyway. But to be able to describe this at all is an enormous relief.

Also, this is one aspect of how agencies operate. This is one aspect of what makes agencies better or worse. And this is a description of a tendency, not something that’s written in stone and never changes.

But it is something.

And I was able to say it.

And given how difficult writing is lately, that feels pretty good. It also feels good to finally be able to say this without practically having to write a novel to do it. I’m tired of having to constantly reassure people that I understand they are often coming in with good intentions, that calling an agency bad is not the same as making everyone who works there ‘bad guys’, or that I don’t even believe in good guys and bad guys in the first place. And never being able to even get to a discussion of what’s happening.

I’m not good at summarizing even at the best of times. But here’s a tl;dr summary to the best of my abilities:

TL;DR: Good agencies make it easy to do good things and hard to do bad things, regardless of what kind of intent and knowledge you come in with. Bad agencies make it easy to do bad things and hard to do good things, regardless of what kind of intent and knowledge you come in with. I’m aware how oversimplified this is, but I have had a lot of trouble writing anything suitable for blogging despite many ideas of things to write. So I have managed to describe one small piece of how to tell if an agency or organization is, generally speaking, a good place or not or somewhere in between. And I’m glad I was able to do that.

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

Best hashtag ever: #GetYourBellyOut

#GetYourBellyOut is the best hashtag ever,

I’d better backtrack.

I had an ISA meeting.  That’s Individual Support Agreement.  At the last second, they brought a Surprise Administrator.  That is what I am calling the lady who showed up at the door to the meeting even though I’d been told that the only people present would be Laura (my DPA and soon to be adoptive mother) and my two case managers.  Surprise Administrator (SA for short) was someone who works in the Howard Center administration.  Surprise because they didn’t tell me she’d be at my ISA meeting until she was at m

The ISA is Vermont’s version of a person-centered plan.  It, of course, just like in other states, does not have to be either a plan or person-centered to qualify as a person-centered plan.  The meeting was certainly not very person-centered.  It degenerated into a shouting match mostly.  And a lot of it was the Surprise Administrator telling me that I was off-topic.  At my own ISA meeting.  When attempting to explain my ISA goals.  Which were “off-topic” because they didn’t like

So it was good that there was a moment of comic relief in all that because otherwise it was just a shitshow that went nowhere productive.

This moment of comic relief came at an unexpected time.

I had defined my first goal as survival.

I meant it.

I actually had specific, concrete actions I wanted taken in order to get to that goal, but the Surprise Administrator was busy telling us that this was impossible.

So at some point an exchange very close to the following took place between Laura and the Surprise Administrator:

Surprise Administrator: Survival isn’t a goal.
Laura: Yeah it is!
Surprise Administrator: It’s a vague goal.
Laura: What’s vague about it? If her heart keeps beating…
Surprise Administrator: Yeah but some people define survival differently than others, like some people define it as being hooked to all kinds of tubes and vents and stuff.
Me: (silently but firmly pull shirt up to show two feeding tubes and an ostomy bag)
Surprise Administrator: OH MY GOD I DON’T NEED TO SEE THAT PUT YOUR SHIRT BACK ON RIGHT NOW!

After the amount of sheer bullshit that went on in that meeting, I can’t even try to make myself feel bad about the amount of giddy, giggly, juvenile pleasure I got out of that incident.  Especially given how sleep-deprived I was at the time.

So later on I discovered the best Twitter hashtag ever: #GetYourBellyOut.

It’s the complete opposite of the Surprise Administrator’s hashtag, which I imagine would be #PutYourShirtOnMel.

The idea is people with ostomy bags are supposed to pull up our shirts, take selfies, and post the pics on Twitter under the hashtag #GetYourBellyOut.

It was started by a guy with a colostomy.  The point is to reduce shame and stigma around colostomies, ostomy bags, stomas in general, etc.  It’s mostly about colostomies but can apply to anyone with similar things.  My ostomy bag goes over a healing jejunostomy stoma after the tube was removed, and I’ll continue to need an ostomy bag to catch the bile until it heals.  Which could be months.

So this is the picture I posted to #GetYourBellyOut:                                               

#GetYourBellyOut

Which is basically, in the above picture, roughly the same sight the “PUT YOUR SHIRT BACK ON” comment was inspired by.

I’m just… highly amused there’s a hashtag for exactly what I did spontaneously out of frustration.

Anyway here’s a Get Your Belly Out website for Crohn’s and Ulcerative Colitis.  I don’t have either of those things, but I love their website picture, which is a bunch of bare bellies with stomas and ostomy bags! 

STOMA BELLIES!

I’m a huge fan of anything that makes people realize that bags, tubes, holes in weird places on the human body, and the like are a normal part of life for a lot of people. And not a cause for excessive bellyaching (oh come on, I had to say it) about having to see it…

Posted in Developmental disability, disability rights, Self-advocacy

I’ll take the ‘dirty’ dick jokes rather than the ‘clean’ r-word jokes, thanks.

I watch a lot of standup.  I watch good standup, bad standup, everything in between.  I just watch standup whether I like it or not.

And I vastly, vastly prefer the comedy that allows for dick jokes and other things that aren’t considered ‘clean’.

Obligatory hot dogs…

Because it’s less likely to seriously offend me.

Because people with intellectual and developmental disabilities are acceptable targets of ‘clean’ comedy.  So when they get rid of all the dick jokes and all the stuff that’s socially unacceptable and ‘dirty’, they’re left with acceptable targets.

Which includes me.

And no, hating r-word jokes is not the same as censorship or not being able to laugh at myself.  I laugh at myself, and at disability, all the time, to the point it makes a lot of nondisabled people really uncomfortable.

The issue is that most r-word jokes are hate.

They’re not meant in good fun.

They say “You’re not a human being.”

It doesn’t matter if you cloak that message in humor, it’s never okay.

The primary targets of the r-word are people with intellectual disabilities.  But it has a broader range than that — it’s aimed in general at a group of people who are harder to define.  Anyone who can be easily mistaken for someone with an intellectual disability, certainly.  And anyone who’s been, in the imaginations of most people, sort of lumped together as this blob of people who aren’t really human beings.  That includes most people with developmental disabilities, some people with cognitive disabilities, and, as I said, it’s a group whose borders are fuzzy and indistinct.  But we’re all lumped together under the r-word in the imaginations of the people who use it.  It’s not a diagnosis, it’s a slur.

And I don’t use the word slur lightly.

To me, for a word to be a slur, it has to be a word that contains within it the notion that the people targeted by it are not really people or human at all.

It can’t just be an insult that’s often thrown at a particular group of people.  It has to be more than that.

The r-word is probably the slur I have absolutely the least tolerance for.

People have been calling me the r-word since I was a child.

My voice sometimes has ‘that tone’ in it that people associate with the r-word.  A sort of ‘dullness’.  People imitating my voice have always taken advantage of that.  And they imitate my posture and mannerisms as well.

By the way it’s very fucked up to have a common mannerism associated with people like you, be the actual American Sign Language word for the r-word.

But you don’t need to speak ASL to use our mannerisms and tone of voice against us.

And yes — people used the r-word on me even when I was technically classified as gifted.  In fact, they told me “Gifted is just what they call [r-words] to convince them they’re doing well in school when they’re really going to special classes.”  I’m not the only person I know with developmental disabilities who was told this growing up.

I was also told I looked like a [r-word] as a way to get me to behave more normally.  It didn’t work.  I never had any idea what they were talking about.  (I also got called “blind” and “psychotic” in similar circumstances.  There was always a tone of complete disgust, like I was a dog who’d just shat on the table at a fancy dinner party or something.)

At any rate, r-word jokes aren’t funny.  At least, not the ones I’m talking about.

And the fact that they’re considered perfectly acceptable for ‘clean’ comedy to the point they seem more common there than in the ‘dirty jokes’ kind, says a lot too much about the society we live in.

R-word jokes are an expression of hate, not an expression of humor.  It’s not just the word, it’s the way it’s used.  It’s the acceptance that those of us targeted are not human beings.  It’s the knowledge that every time someone accepts this kind of hate into their mind, people like me are at more risk of bullying, abuse, hate crimes.  And that most people don’t even register it as hate.  Even though it’s some of the most horrible and dangerous hate I’ve ever seen.

Sacha Baron-Cohen says, “I am exposing.  I am airing prejudice.”  The only problem is that the people [who] are laughing, are not laughing at the prejudice.  They’re applauding the prejudice!  When the joke is “Throw the Jews down the well, kill the Jews” it’s not funny.  But even if it was funny, they’re applauding it.  

Abraham Foxman, “The Last Laugh”

I agree with a lot of the people on “The Last Laugh”.  It’s a documentary about where the line is between acceptable and unacceptable topics for humor.  I don’t think there’s unacceptable topics for humor, but I do think there’s more and less acceptable ways to handle them.  And a lot of it depends on who is saying the joke, how they are saying it, and what they are saying. 

And when I talk about r-word jokes, I’m talking about people without any of the disabilities covered by the r-word making jokes at our expense.  Telling a joke that has real-world consequences and hiding behind “It’s just a joke” is both cowardly and dishonest.  And I feel like there’s a tradition among comedians to hide an immature impulse to do whatever you’re told not to do, behind some kind of pretense of moral nobility.

Give me a good dick joke any day.  Seriously.  Sex can be funny.  Hate isn’t.  At least, expressing hate is not funny.  Tell some good jokes about asshole comedians who think hating people with I/DD is ‘clean’, though, and I might laugh.

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

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

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

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

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

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

Anyway.

To be very, very clear.

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

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

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

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

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

So again.

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

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

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

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:

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.

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. www.disabilityintegrationact.org
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. www.disabilityintegrationact.org
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. www.disabilityintegrationact.org
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. www.disabilityintegrationact.org
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. www.disabilityintegrationact.org
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. www.disabilityintegrationact.org
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 http://www.disabilityintegrationact.org/