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.

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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/

 

 

 

 

 

 

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

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

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

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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.

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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.

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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.”

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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You’ll pry my apartment keys out of my cold dead fingers.






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

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

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

 

Posted in Developmental disability, Developmental disability service system, HCBS

My assessment scores, for reference purposes.

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.

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

They then divide that into three areas:

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

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.

 

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.

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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 Developmental disability service system, HCBS

The apparent dignity in being a slob, and the terrifying catch-22 on the other end.

When you’re a slob, you don’t have to tell anyone that the reason you never did laundry in 9 months is because you didn’t know how despite being taught just as well as your brothers.

When you’re a slob, you don’t have to tell anyone that if you don’t change clothes for weeks or months on end it’s because dressing yourself has always ranged from difficult, slow, and exhausting to impossible depending on the circumstance.

When you’re a slob, nobody has to know that you actually don’t know how to shower, no matter how long you stay in there and go through the motions.

When you’re a slob, people think you’re gross but they don’t think you’re incompetent.  They think you’re the sort of person they don’t really want to smell, but you’re neither disabled, nor like some of the spoiled brats you went to school with who could’ve taken care of themselves but always had someone to do it for them so never learned.

When you’re a slob, people think you make bad choices but they don’t think you’re pathological.

When you’re a slob, people find you sort of relatable as a human being still.

When you’re a slob, and only a slob, they don’t tell you that you can’t live on your own and need your civil and human rights taken away for your own good.

There are other consequences to being a slob, mind you.  But sometimes it’s easier to be a slob in other people’s eyes — someone who’s made a choice, even if one they think is lazy and morally wrong — than to be a retard.  And I’m using that word advisedly, because that’s the word they’re thinking about you, not something sanitized and pretty.

And when you’re a slob, you can convince yourself you’re in control of all this, even if you’re not.

But seriously.  When you’re a slob, you get to be a human being.  Sometimes it’s just easier to say, “I’m a slob,” “I’m such a procrastinator,” “I don’t care about my appearance,” “I’m so gross,” whatever, keep it relatable, keep it human, but it’s a lie.

Because I don’t actually want to live in unsanitary living conditions.  I don’t want to laugh it all off over and over again.  I don’t want to watch my remaining functioning crumble out from under me because I’m physically and cognitively unable to keep my environment uncluttered enough to function.  These are not situations I have ever wanted.

But I’ve endured them.  Over and over again.  Allowing people to believe what they will.

For so many reasons.

So I could retain the dignity of being considered merely a flawed human being and not a walking pathology.

So people wouldn’t declare me too incompetent to live on my own.

So many reasons.

And then I’ve watched a friend with a developmental disability get told that the infected ulcers on her legs were the result of a “lifestyle choice” — both by Howard-Center-appointed testers who refused to acknowledge she was unable to bathe herself, and by VCIL who at the time catered to wheelchair users and she “only” used a cane — and I’ve wanted to spit nails.

Because that’s the fucking flipside, the catch-22 of being a slob.

Is they can just call you a slob when they want to deny you help you need.  Help that may be at the level of survival, like it was for my friend with her infected leg ulcers.  Like anyone would be so much of a slob that they’d get infections on their legs and go to the trouble to seek help to get services to get help bathing.  That’s not how it happens, people.

But all these things have a catch-22 angle to them.

Admit you need help and they’ll ‘help’ you right out of your right to live in your own home.

Insist on your right to live in your own home and they’ll hold you to impossibly high expectations and try to deny you help and call it a ‘lifestyle choice’ when you can’t do the things.

Be a slob and be denied help because slobs don’t need help they just need a kick in the pants for their laziness.

Admit you’re not a slob and if they believe you, you might be shunted into a nightmare world against your will.

There are no right ways to be developmentally disabled around here.

And I’m hearing horror stories.  About people suddenly being pushed to do things on their own they’ve never done before.  And if they manage it even once even for a little bit, they’re told they don’t need help, sent on their way, hours cut partially, or cut out of services altogether.

There are no right ways to be developmentally disabled around here.

We aren’t supposed to exist anymore.  We’ve become too inconvenient.  We’re the reason their agencies even exist, we’re the reason they have a paycheck, but we, ourselves, as people, as messy human beings who need their assistance to survive, are too inconvenient.  So they’re Xing us, one by one.  Or trying.  We need to resist Xing with everyting we’ve got.

For the time being, I'm still here. Big, fat, hairy, smelly (the VNA is short-staffed, I can't frigging help it), and all. And I intend on remaining.
For the time being, I’m still here. Big, fat, hairy, smelly (the VNA is short-staffed, I can’t frigging help it), and all. And I intend on remaining.

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

Your Right to a Community Life: A Guide to Home and Community Based Services Advocacy

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Your Right To A Community Life: A Guide to Home and Community Based Services Advocacy

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.

It’s in PDF format:

Your Right to a Community Life: A Guide to Home and Community Based Services Advocacy

And anyone receiving or trying to receive these services should read it so you know your rights under federal law and know how to fight for them regardless of what BS you’re told in the meantime.