Posted in Developmental disability, disability rights, Self-advocacy

I need time. This is about accessibility.

Momo walking in front of a bunch of clocks with a tortoise.
Momo walking in front of a bunch of clocks with a tortoise.

I need time.

It takes me time to understand things.

It takes me time to make words.

It takes me time to respond to things.

To make medical decisions, I need the time to have a two way conversation with the doctor.

I need time.

Nothing changes this.

Shortcuts and attempts to speed it up slow it down more.

I literally walk faster than I run.

My brain is the same way kind of.

I get there. But I need the time. If it seems fast it’s because I’ve done it a million times already, many of them slowly.

Many times people assume based on the end product.

So if I have a complex thought they think it’s a fast thought.

I get to complex thoughts slowly usually.

Or they look complex. But they’re actually simple. But they translate as complex when they combine with language. Or people think lots of words means complicated. It doesn’t. It can mean I had trouble finding the right ones.

At any rate if people think they see complicated thoughts they often think that means fast thoughts. Or they think if I type or move fast I think and understand fast. Or they think fast in one context means fast in another.

None of those things are true.

I do best with things outside of what most people think like.

To get usual types of information and respond and have it be meaningful I need time. Lots of time. I get there but it takes a lot of extra time whether anyone sees that time or not.

To make it look fast I have to take dangerous shortcuts that harm me or confuse me.

I get confused easily.

I am good at not showing it. I suspect anyway. Sometimes.

But I get confused a lot. And it takes me time.

All of this is disability related.

I have developmental disabilities. I have cognitive disabilities. I have physical disabilities. All of these things are part of it in their own ways.

I usually tell people if you think of me as having a brain injury I make more sense. It’s the easiest analogy most people are likely to be familiar with.

But really as labels go I can identify a lot cognitively with people with dementia, stroke, brain injury, intellectual disability, epilepsy, autism, learning disabilities, developmental disabilities, and lots of other things. Some of which are labels I’ve received or qualify for and some aren’t, but there’s cousinhood going on big time even when I don’t. Cognitive kinship.

It’s the way thinking works and the obstacles we face in the outside world that determine our similarities and differences, far more than what diagnosis someone decided to give us.

That’s one reason I don’t like communities based in a single diagnostic label. I’d rather seek out familiar people wherever they can be found. And there’s something degrading about being told that it’s the labels the medical profession decided to give us that determines whether we find that kinship. That’s one reason the developmental disability self-advocacy community insists on labels as less important than in some other disability communities. We’ve found a kinship based on common experiences and common values and desires among other things. And we prefer that to being divided up by other people’s ideas of categories. And we’ve had our categories used to erase our humanity. We have lots of reasons.

Most people with developmental disabilities have cognitive disabilities of some kind. And many of us, for many reasons, take time to figure things out, time to respond, time.

This is not just a personal request. It’s about accessibility. Accessibility isn’t just about what people want. In many places, including here in the USA, it’s the law.

Accessibility is a disability rights idea.

It has to do with the fact that societies plan for some people to be there, take for granted that some people will be there, build everything physical and social around the strengths and weaknesses of that kind of person. And then other people aren’t planned for or taken for granted and there’s all these obstacles to our participation in society. We are the disabled people.

Accessibility is about making it possible for everyone to participate by removing those obstacles and barriers that shouldn’t be there, and by building things in ways that make it as easy as possible for us to be there and participate and be part of things.

That isn’t the world’s best description but I’m trying. Most people if they’ve heard of accessibility they’ve heard if things like curb cuts and wheelchair ramps and elevators. Things that apply to physically disabled wheelchair users mostly.

Cognitive accessibility is different. Most people haven’t heard of it. Many physically disabled people who are big on physical accessibility don’t even believe in it. It’s part of ableist bigotry against cognitively disabled people.

But it’s huge. Just like physical access it can be life and death.

And for many cognitively disabled people, TIME IS ONE OF OUR BIGGEST ACCESSIBILITY ISSUES.

You need to give me time to think. Time to understand. Time to respond. Time to have a back and forth conversation. Time to put things together. TIME.

And the time needs to be without pressure. Without judging me for needing more time. Without making me explain why I need time. Without treating me as demanding. Without acting like your time is so utterly valuable that to give me even five seconds is a giant favor. Without acting like cognitive accessibility is a favor at all. Without all kinds of bizarre conditions in order to qualify as worthy of your time. Without treating me like I’m asking for special treatment. Without using the fact you gave me extra time to demand other things of me later.

None of those things are how real accessibility works. Because all of those things treat me at best like I’m only welcome under certain conditions. Like I’m only welcome because you’ve decided you want to be nice to me today. That’s not welcome. And it’s not accessibility. A wheelchair ramp that disappears and turns into a staircase whenever a wheelchair user feels grouchy isn’t access either.

Time isn’t always easy to come by. But we can’t just make our brains run the standard way. We need more time than usual. Or we need the time we have used different than usual. Or something.

Not getting enough time is such a common obstacle to access for such a huge and diverse group of people. Yet time is rarely seen as an access barrier. And when people bother to give us the time we need, it’s treated like a favor. Or like something that isn’t actually necessary. Something that wouldn’t be a problem to take away. And it’s our problem if we can’t keep up.

I’m dealing with huge timing issues in the hospital. It affects everything from comprehension to communication. It’s interfering with some of the most basic parts of my medical care. I’m getting exhausted, scared, and discouraged trying to cram my abilities into a speed that’s impossible for me. And half the time I’m not even getting the time to explain what I need when it comes to time: people force the conversations so fast it distorts communication at best and they can’t even tell it’s happening.

I’m not the only one. I had a roommate who communicated complex thoughts when we were alone but couldn’t get three words out around family and staff before they’d all decide what she was thinking. That’s a lot of things including lack of respect, but part of giving her respect was giving her time.

Meanwhile I’m always getting lectured on how I don’t respect people’s time because I make timing mistakes directly related to being disabled. >_< From people who rarely give me time enough to understand or respond right to anything.

People turn my access requests into weapons against me. Requests for time become ways to paint me as demanding or entitled. If I’m granted time, people will later explode at me if I still don’t understand.

“I GAVE YOU A WHOLE HOUR OF MY TIME AND I’M NOT ANSWERING ANY MORE QUESTIONS!” A doctor who was paid for an hour of consultation about choices between different styles of feeding tube. Later he happened to be assigned to me for a totally unrelated procedure and apparently the “favor” of his paid time meant he couldn’t answer a simple routine question any patient would ask. All I needed to know was whether I was getting Propofol during the procedure. Instead he wouldn’t even listen long enough to find out what I was asking. And I got shouted at just before a stressful procedure taking place in a room that gives me PTSD flashbacks every time I see it. I ended up with somewhat dangerous cortisol issues all because he happened to be the same doctor paid to spend an hour with me once.

People go out of their way to tell me what a hassle it is to give me any of their time at all. Even when they’re paid good money for it. The same people go out of their way to insist I don’t value their time enough. Often based on a false equality. But also based on rules I can never predict or follow because they require cognitive skills I don’t have.

This leaves me in the permanent belief that my time has no value at all. But that everyone else’s time is worth something close to infinity.

Mind you, until recently, using words or ideas like “time being worth something” would never have occurred to me. I’m still not sure it sits right in my head. And I’m not sure if it not sitting right is for a good reason or not. It just isn’t a way I think of time. Not the way they seem to mean it. Of course I barely understand time at all. But this way still confuses me.

But I do understand the concept of everyone always has to take time for me. And that this is a huge waste if their time. Because I’ve heard that my entire life.

I don’t actually buy the idea that my trouble processing time makes me a bad person who doesn’t understand the huge value of everyone else’s time. Or a person who needs to be condescendingly taught about such things. Because that just doesn’t pass any of my mental smell tests. But the way I’ve been treated and what I’ve been told leads me to feel that way.

So one barrier to access for many of us is time. But an additional one is the belief that we barely deserve the time we get, don’t deserve more, and are just taking away from everyone else’s much more important time. These add together until we get less time and lower quality time (like when the person spends the whole time letting you know you inconvenienced them), when we need more.

I need time.

But this is more than a personal need. It’s an accessibility issue. It changes how I’m able to participate in society. Right now it’s messing up my medical care. It’s a huge important deal, not an afterthought. And I’ve rarely met anyone with developmental or cognitive disabilities where time wasn’t an obstacle to access.

So giving us time, when it’s possible, isn’t a favor. It’s an access issue. And be real careful declaring it impossible, because there’s usually a solution. A lot of the time when people say it’s impossible they really mean it’s not important to them or they’ve always planned their time with a lack of time for us just built in. I only mentioned possible because there’s some people with cognitive disabilities whose own time issues make it hard for us to do this for someone no matter how hard we try. But for most people that isn’t a problem. And there are often solutions when time is limited. You just have to start from the assumption this is both important and possible.

Time is certainly important to those of us who need more of it. And it’s an accessibility issue just as important as wheelchair ramps, curb cuts, or Braille. It seems like such a little thing but nobody wants to give it.

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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 Being human, Things I try to hide

Memory is complicated.

A sentence that may be difficult to understand:

I use my excellent procedural memory to hide wild variation in the reliability of my declarative memory.

Procedural memory, or implicit memory, is how you just know how to do things.  Especially physically — the classic example is riding a bicycle — but other ways as well.  Procedural memory is not only rarely a problem for me, but often a strength.  It’s why I’m such a good touch-typist, among other things.

Declarative memory, sometimes called explicit memory, is the kind of memory you’re generally aware of when you remember something.  You remember facts, and events, and words and concepts associated with them, and those sorts of things.  That’s declarative memory.

Sometimes I gloss over the intricacies involved here and just say I have memory problems.  But that’s not entirely the case, even though it basically functions as memory problems  And it’s not a consistent thing even when it does exist.  And it’s not like I just, across the board, have trouble with memory.  Nor do I have trouble with memory along the lines most people know about to divide memory up into different types.

As mentioned, my procedural memory has been excellent for as long as I know.  So much so that I almost overuse it to compensate for fluctuations in declarative memory.  So much so that I use it as a gateway to declarative memory in certain ways.

This is important:  This is the way cognitive abilities shape themselves around patterns of ability and difficulty that are unusual.  Just like physically disabled children may learn to walk in a way that’s completely out of line with how most medical professionals define how walking development should happen, cognitively disabled children learn to think in ways that are completely out of line with how most medical professionals believe cognitive development should happen.  Then if they notice at all, they frame it entirely in terms of what we can’t do, what delays we have.  They never look at it as another variation on what humans can do.  I love seeing physically disabled children who are too young to be self-conscious about the unique ways they get around.

Anyway, back to memory.

So, my memory issues are probably in several areas, but the biggest one is simply a voluntary retrieval issue.  In other words, it’s more about my general inertia than about actual problems with memory.

Inertia, for me, is all about volition.  Which is the ability to do things, directly, on purpose.  It’s not about the want to do things.  It’s not about the ability to do the things if the ability is triggered properly.  It’s about getting from want to do.  Most people have very little idea that there can even be a gap there.  For some people, that gap is so wide that we get various medical labels: catatoniaParkinson’sapraxia.  For some people, the gap is wide enough to cause trouble but it goes unrecognized,

Anyway, one very under-recognized thing about inertia is that it doesn’t stop at the connection between thought and action.  It’s not just the inability to stand up and move when you want to, or the inability to carry out a complex plan.

There’s a handy chart that I always pull out at these times.  It was developed by Martha Leary and Anne Donnellan.  They developed it eons ago to quickly explain movement difficulties — where movement is understood to involve a lot more than just physical movement:

Marked difficulties in: Starting, Stopping, Executing (speed, intensity, rhythm, timing, direction, duration), Continuing Combining, or Switching. May impede: Postures, Actions, Speech, Thoughts, Perceptions, Emotions, Memories. Martha Leary & Anne Donnellan, 1994.
Marked difficulties in: Starting, Stopping, Executing (speed, intensity, rhythm, timing, direction, duration), Continuing Combining, or Switching. May impede: Postures, Actions, Speech, Thoughts, Perceptions, Emotions, Memories. Martha Leary & Anne Donnellan, 1994.

Anyway, you’ll notice memories at the end of that list.  Like thoughts, perceptions, and emotions, those are not what people normally think of as actions.  But they are actions.  My inertia is across the board, affecting all of the things on the right-hand side of that chart in different, extreme ways.  And memory is far from unaffected.

So I have what seems to be an inconsistency to my memory:  I can’t recall things on purpose, and at any given time I can’t recall most things.  When people see this, and they see it often, they say I have a terrible memory and leave it at that.  And I test badly on most formal tests of memory.

But.

If something happens to jog that exact same memory I couldn’t recall to save my life before, I will not only recall it, but recall it with more precision and accuracy than average.

Since memory is imperfect and fallible for literally everyone, I haven’t just gone by what it feels like.  I have looked for instances where my memory of things can be corroborated by documentation that existed at the time, and compared my memory of events to the memories of other people I’ve known.  Generally — not always — when I have access to a memory, my memory is extremely good.  Including my memory for extremely distant events, earlier in my life than I’m supposed to remember anything.

Good doesn’t mean perfect.  It just means good.  My memory is as fallible and malleable as anyone else’s.  Anyone who thinks theirs isn’t is fooling themselves.  But I often remember details others don’t, and I remember things more accurately on average, when I do remember.

I cover for the lack of access to most of my memories in a variety of ways.  One is by relying on procedural memory for more than most people rely on it for.  This gives the impression of more competence.  I also can often memorize a vague description of something even if I don’t actually remember a thing about it at all.  And I rely on what I can remember — if you can remember something, people assume you can remember everything. And people don’t expect people to have the massive memory gaps I often have, even people with memory issues.  I also find ways to trigger retrieval of memories indirectly, but I can’t always do that.

So there’s a problem of access to memory that has to do with inertia.  And inertia is all about the difference between a voluntary thing and an involuntary or triggered thing.

But there’s more to it.

Sometimes my memory of the world shrinks so extremely that I can’t remember or perceive anything outside of what I am perceiving in the moment.

Often, events and sensory input that are too much for my brain to process, crowd out memory and mess up something about my ability to remember recent events (past few weeks or months at least) clearly.  After a time (days, weeks, months), those recent events come back into memory.

When I’m delirious, I’ve lost memories .  Sometimes even after I’m not delirious anymore they never come back.  I’m lucky I can remember the period around my father’s death, because several months later I lost it all while delirious.  When I got better I got back that period, but lost a couple months in between, never returned.

But at any rate, with all this going on, it is not unusual for the whole world to be new to me, my only guides for how to behave not consciously available to me, some pattern laid down by decades of repetition of this process so that I can normally function.  But where the entirety of time besides now is blank, and the entirety of the world outside here is blank, and I am starting anew, all over again, until memory comes back.

And it does come back.

But the world is a very weird, scary place when most of is blank.

Especially when I can perceive something is supposed to be there, out in the blankness, but all I can find is white nothingness.

I have recently begun telling people about this because my friends have told me to hide less from them.  But it’s frightening.  I am concerned if people knew the extent to which this happened, they’d see me as incapable of making decisions.  And that’s dangerous.  There are reasons i cover for it.

But understand that I am always covering for it.  This never goes away.  It’s never not been there.  There are additional issues over the years what with delirium, but this happens all the time.  It happened to me pretty extremely this week because of an overly long, tense medical appointment.

And I’ve given you the simplistic version.  There’s a lot more to it than this.  Sorry for all the technical language, but it’s more precise than the language most people use for memory, and I needed that.  And I need to be more open about how my mind actually works.  There’s a lot of things I have trouble doing, or do very differently than usual, that I am always covering for out of fear.  I’m tired of covering for thm.

 

 

 

Posted in Things I try to hide

I hide what I don’t know when the blankness is huge.

A lot more of the time than I let anyone realize, most of the world is blank.  Most of what happened is blank.  Most of what is supposed to be background knowledge is blank.  Most of the past is blank. Lots of the present is blank.  Lots of things are blank.

And to let anyone know is terrifying.  Because I don’t want people to ever realize how much I sometimes don’t know at a given time.  I’m afraid of what would happen to me if people knew.

The world starts fresh over and over for me, fresh from a moment.  I start not knowing where I came from or what is happening and I wing it.  Over and over.  I am good at just acting in the moment and not letting on that I feel I just appeared in that moment.

Eventually, eventually it all filters down into awareness, memory, and I can write about it:   I just appeared where I am.  I don’t know how I got here.  I don’t know what led up to here.  Everywhere I look is blankness.  This is a common thing.

And I may not pass as not cognitively disabled but I sure as hell try to gloss over the extent.  And since people don’t expect such level of blankness it works in some circumstances.  I haven’t even managed to convey the half of it.  But I probably never will.  I’ve tried.  Hence this.

So what do I do?

Hold onto a familiar rock and hope that things beyond the rock will be familiar again one day and the world will expand again and not everything will be blank.

Photo on 6-18-18 at 6.24 PM.jpg

When I can remember the rock.