Posted in Developmental disability, disability rights, Epilepsy, PSA, quotes, Self-advocacy, Temporal Lobe Epilepsy, Weave of Traditions

I don’t just have one developmental disability.

I hate labels but this post is all about labels. Deal with it.

I do not just have one developmental disability. This is one reason that I identify more with the self-advocacy movement than any diagnosis-specific movement.

So the developmental disabilities that are official in California, where I come from, are: Cerebral palsy, autism, intelleectual disability, childhood-onset epilepsy, and fifth category (anyone who needs the same kind of care and does not mostly have a specific learning disability like dyslexia, or a purely physical disability (except CP).

I have childhood-onset temporal lobe complex-partial seizures. I also have had, less freqently, absence or petit-mal seizures (where you stare and then totally forget everything that happened), atonic seizures (where you drop to the floor very rapidly and usually injure yourself, it is a sudden loss of muscle tone, not a grand mal/tonic-clonic), and myoclonic seizures (where your arms fling out while conscious for no apparent reason). I may have had other types but that is what I can think of.

Childhood epilepsy has affected me more than any other DD I have, I think. It sounds weird unless you have grown up with it largely untreated or mistreated. It hits you with out of place emotions that you start off thinking are real. It makes everything weird and repeaty. It gives me deja vu and jamais vu. Randomly, but usually in clumps. And I have developed the so-called TLE (temporal lobe epilepsy) personality. The following is from Wikipedia:

Focal aware means that the level of consciousness is not altered during the seizure.[2]In temporal lobe epilepsy, a focal seizure usually causes abnormal sensations only.

These may be:

  • Sensations such as déjà vu (a feeling of familiarity), jamais vu (a feeling of unfamiliarity)
  • Amnesia; or a single memory or set of memories
  • A sudden sense of unprovoked fear and anxiety
  • Nausea
  • Auditory, visual, olfactory, gustatory, or tactile hallucinations.
  • Visual distortions such as macropsia and micropsia
  • Dissociation or derealisation
  • Synesthesia (stimulation of one sense experienced in a second sense) may transpire.[8]
  • Dysphoric or euphoric feelings, fear, anger, and other emotions may also occur. Often, the patient cannot describe the sensations.[9]

Olfactory hallucinations often seem indescribable to patients beyond “pleasant” or “unpleasant”.[10]

Focal aware seizures are often called “auras” when they serve as a warning sign of a subsequent seizure. Regardless, an aura is actually a seizure itself, and such a focal seizure may or may not progress to a focal impaired awareness seizure.[11]People who experience only focal aware seizures may not recognize what they are, nor seek medical care

Focal impaired awareness seizures

Focal impaired awareness seizures are seizures which impair consciousness to some extent:[2]they alter the person’s ability to interact normally with their environment. They usually begin with a focal aware seizure, then spread to a larger portion of the temporal lobe, resulting in impaired consciousness. They may include autonomic and psychic features present in focal aware seizures.

Signs may include:[12]

  • Motionless staring
  • Automatic movements of the hands or mouth
  • Confusion and disorientation
  • Altered ability to respond to others, unusual speech
  • Transient aphasia (losing ability to speak, read, or comprehend spoken word)

These seizures tend to have a warning or aura before they occur, and when they occur they generally tend to last only 1–2 minutes. It is not uncommon for an individual to be tired or confused for up to 15 minutes after a seizure has occurred, although postictal confusion can last for hours or even days. Though they may not seem harmful, due to the fact that the individual does not normally seize, they can be extremely harmful if the individual is left alone around dangerous objects. For example, if a person with complex partial seizures is driving alone, this can cause them to run into the ditch, or worse, cause an accident involving multiple people. With this type, some people do not even realize they are having a seizure and most of the time their memory from right before or after the seizure is wiped. First-aid is only required if there has been an injury or if this is the first time a person has had a seizure.

This is Mel again, just to note that focal impaired awareness seizures must be the new term for complex-partial seizures, which is what I grew up being told I had. Back to Wikipedia:

Postictal period

There is some period of recovery in which neurological function is altered after each of these seizure types. This is the postictal state. The degree and length of postictal impairment directly correlates with the severity of the seizure type. Focal aware seizures often last less than sixty seconds; focal with impaired awareness seizures may last up to two minutes; and generalized tonic clonic seizures may last up to three minutes.[citation needed] The postictal state in seizures other than focal aware may last much longer than the seizure itself.

Because a major function of the temporal lobe is short-term memory, a focal with impaired awareness seizure, and a focal to bilateral seizure can cause amnesia for the period of the seizure, meaning that the seizure may not be remembered.[c

Hippocampus

The temporal lobe and particularly the hippocampus play an important role in memory processing. Declarative memory (memories which can be consciously recalled) is formed in the area of the hippocampus called the dentate gyrus.[citation needed]

Temporal lobe epilepsy is associated with memory disorders and loss of memory. Animal models and clinical studies show that memory loss correlates with temporal lobe neuronal loss in temporal lobe epilepsy. Verbal memory deficit correlates with pyramidal cell loss in TLE. This is more so on the left in verbal memory loss. Neuronal loss on the right is more prominent in non-verbal (visuospatial memory loss).[14][15][16][17][18]

Personality

The effect of temporal lobe epilepsy on personality is a historical observation dating to the 1800s. Personality and behavioural change in temporal lobe epilepsy is seen as a chronic condition when it persists for more than three months.[20]

Geschwind syndrome is a set of behavioural phenomena seen in some people with TLE. Documented by Norman Geschwind, signs include: hypergraphia (compulsion to write (or draw) excessively), hyperreligiosity (intense religious or philosophical experiences or interests), hyposexuality (reduced sexual interest or drive), circumstantiality (result of a non-linear thought pattern, talks at length about irrelevant and trivial details).[21] The personality changes generally vary by hemisphere.[21]

The existence of a “temporal lobe epileptic personality” and Geschwind syndrome has been disputed and research is inconclusive.[21]

Okay it is Mel again. Most of the things listed apply to me in one way or another. In fact, the more you do your research, the more you would think (if you know me well) that they had me followed. It is far more a part of me than anything else.

One thing Wikipedia left out, is the development of an intellectual disability later in life, caused by the temporal lobe epilepsy. From the signs, I seem to have done that. I have been told by doctors I have the cognitive status of an infant. And I have been told similar things, including that I will never grow up, by a neuropsychologist who seemed to want to get my parents to put me under adult guardianship. And I know I fit the official criteria.

Hypergraphia is more than compulsive writing. It is compulsive creativity of any kind. I definitely have that.

I’m definitely autistic. But like these other labels, I don’t like being confined to it.

Also, I grew up hearing the words “underlying developmental disability” a lot. I didn’t understand them and they scared me. I wanted to know what it meant but at the time had very little means to ask. They also said that it was severe, complex, unsalvageable, and many other things to that effect.

So basically, CP is the only one I definitely don’t have. But there are other less-known ones like childhood-onset brain injury and fetal alcohol syndrome. Also given that CP is involved, there are people with physical and learning disabilities that would have qualified back in the day. I still feel like my agrin mutation leading to congenital myasthenic syndrome is a developmental disability in and of itself.

But I am part of the DD self-advocacy movement. One of the most important parts of that movement, for me, is the rejection of specific labels. This does not mean we don’t understand we are different from each other. It is just a core part of the values of the movement to put the person first and our disability second. That doesn’t mean disregarding disabilities or important individual differences. It just means we go about it in a different way.

My favorite part of the self-advocacy movement is we seem to have gotten cooperation among very different kinds of people with disabilities. For instance, I went to a live-in rec program. It was hell on earth, but the saving grace was the cooperation. I was being pushed in a wheelchair. People who could walk but unsteadily were allowed to grab my chair. Meanwhile, people who could talk would get the attention of staff. If someone fell, which happened often, people who could walk would go for help.

I have never seen that kind of cooperation among any other group of people with disabilities. Or, as a multiply-disabled (including several DDs) friend said, the DD world was doing cross-disability great, long before cross-disability was a term. We are an accident of history. There is no particular reason for us all being lumped together, other than that historically we were put in institutions for the “feebleminded”. Sometimes also the “insane and feebleminded” or just the “insane”, but mostly they focused on feebleminded.

This post is a lead-in to several other posts. I had to do it this way. Just like I need the words “genderless lesbian” without being a TERF, I need the words to explain my relationship to the different kinds of developmental disabilities.

So this is my attempt to say: I seem to have temporal lobe epilepsy (with other kinds of seizures), an intellectual disability, autism, and some kind of unnamed DD. I also have been called low-functioning. But I don’t live my life as if labels matter. I just need these words, right here and right now, to explain things. At least one further post is planned. I don’t know when.

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Posted in disability rights, quotes, Sunday - dimanche - domingo - söndag - Sonntag

The Things I’ve Heard About My Eyes and Brain… (Storytelling Sunday)

Some of the words used in this post are really ugly. That’s because they’re the really ugly words that I heard. I’m not gonna sugarcoat this. But if you can’t deal with reading the r-word in either of its common forms, or hear “psychotic” or “blind” used as insults rather than descriptions, you might want to skip this.

Storyteling Sunday, written on red text, on a striped yellow/green/black/white/cyan background.
Storytelling Sunday.

The story here, the reason it’s on Storytelling Sunday, is because each of these quotes forms one little piece of a long story that’ll be familiar to way too many disabled people. And while I’d like the story to stand on its own, I’d just like to comment that I don’t think lesser of any group targeted by such speech. And I don’t even necessarily think lesser of the people creating this speech — it’s very destructive, but it happened a long time ago to a bunch of people I’m leaving anonymous on purpose because who knows how they’ve changed since then or why each one said what they said.

You look BLIND.

close family members

What, are you a RETARD or something?

other kids

You look PSYCHOTIC.

close family members

You look RETARDED.

close family members

Do you have a HEARING PROBLEM or something?

lots of people

What are you BLIND?

lots of people

People think you’re BLIND.

close family members

People think you’re RETARDED or something.

close family members

People think you’re PSYCHOTIC.

close family members

You TARD.

close family members

You’re HALF A BUBBLE OFF PLUMB.

close family members, therapist

You’re A FEW SANDWICHES SHORT OF A PICNIC.

close family members

You’re a FEW FRIES SHORT OF A HAPPY MEAL.

close family members

You DON’T HAVE ALL YOUR OARS IN THE WATER.

close family members

You’re a little bit TETCHED.

close family members

Oh don’t worry, we’re all a little SLOW in this family!

close family member regarding family reunion

It’s only after living with you for six months that I can see the degree of your VISUAL IMPAIRMENT.

close family member

You look STUCK-ON STUPID.

kid

You sure you’re not BLIND?

practically everyone

You CAN’T SEE can you?

practically everyone

Hey look at that BLIND [guy/lady]!

Lots of strangers

You know ‘gifted’ is just what they tell RETARDS they are so we don’t have to tell them they’re RETARDED…

lots of kids

You just seem like a SPECIAL ED KINDA GAL…

A hairdresser who’d asked whether my school was a ‘special school’ (it was).

These things were said in all manner of tones. Some people seemed to be trying to be affectionate. Others were aiming to insult and harm and bully. Others were just confused or curious. But all of this has an effect on you when you hear it day in, day out, every day, in one form or another. Especially when it’s coming from loved ones and people who are supposed to be loved ones.

I’ve asked about the blind part. Apparently it’s about a bunch of things: I stand too stiffly. I don’t make the normal eye movements and look straight ahead too much. (This is just called “staring” and apparently makes me stand out.) I don’t respond normally to visual information. (I am low-vision, guys…) I wear dark glasses in low light. I don’t always move my head or eyeballs in ways that would indicate noticing things visually. I could go on. Apparently I have many things that make me “look blind”.

But hearing these things so much made me think there was something wrong or shameful about being low-vision.

And, well, as I said, the story told by the above quotes most likely speaks for itself when any disabled person who’s heard similar reads it. I just want to make sure people know, my problem here is not “OMG I’m being compared to people I think are inferior,” it’s “OMG I’m being compared to people the speaker thinks is inferior, and being thought inferior myself, but I wouldn’t be inferior whether or not these things were accurate descriptions.

Right now I’m talking about blindness, but blindness is just one of the things that was repeatedly called to my attention as a sign I was Doing Something Wrong, or rather Being Something Wrong (you know you’re being accused of Being Something Wrong when the local kids use your full name as a cuss word growing up). Which — no — doesn’t make the slightest bit of sense, but ableism rarely does.

But it does get inside of you, telling you these things do make you inferior (whether they exist or not barely matters). And I’ve been ridiculously afraid of being low-vision for way too long. Time to change what’s inside my head, time not to let this crap into my brain anymore. You don’t have to accept every idea handed to you, something that was news to me when I learned it rather late.

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

Birthday card from another universe.

Close-up photograph of a small orange salamander in what looks to me like the forest floor of the California redwoods. Titled “Morning Walk,” by Sandy Gardner, 2008, card by Greentree Designs.

Whoever chose this card cared about me.

They cared enough to choose an extremely meaningful picture for me on the birthday card. They didn’t have to do that.

The bithday card was not this year, my 39th birthday.

With the dates written, it would have to be my 37th or 38th. If I’m doing the math right.

Things were already hitting the fan in a huge way at that point. I was being hurt by some of the same people who signed the card.

But back then, there were still enough people who cared about me as a human being and treating me like as a human being (or in some cases, at least, appearing to) that things were just… different.

Reading it was like reading a postcard from a universe I barely remember.

A universe that was already disappearing by the time the card came.

But there was a time, if I was hospitalized, Howard would take extra time to visit me in the hospital and help me get better and go home, and help me with the transition home, and give extra help to keep me out of the hospital, and extra help to make up for the fact that you never go home healthy and often need some extra support.

There was a time when they didn’t treat my second mom like she’s made of poison. To the point they won’t allow my caregivers in the same house as her for longer than 5 minutes, and have gone to great lengths to lie in order to avoid having to deal with her, because she complained about their medical neglect and they never forgave her.

But there was a time.

There was a time when some people tried to help me. Even case managers.

There was a time when things mostly worked.

There was a time when people’s efforts to help me were not thwarted by the office people at every turn.

There was a time when many people in the office were actually helping me.

Mind you.

The system was never good.

But it was never like this.

This card was signed by seven people.

They didn’t have to get me a card.

They were being nice. They were treating me like a human. Some of the time.

It’s different now.

It’s different now.

I don’t understand.

I don’t understand.

It’s different now. That’s all I know.

Posted in Self-advocacy

Once I’ve identified something I won’t do, stop trying to get me to do it.

I got into the hospital in part by doing what everyone else told me to do. I got stress fractures in my spine. They got worse. I got all of this by doing physical work other people thought was important to proving my motivation or demonstrating independence. They took advantage of my pride in my work and other things to make me easier to persuade. But the end result was I broke my back twice.

I made a promise to myself I wouldn’t do that again. I wouldn’t listen to other people’s ideas of what I should do if it conflicted with what my body could tolerate. It doesn’t matter who they are or what their motivations.

If you can’t tell by now that I have a ton of motivation, nothing I say or do will convince you.

I don’t have to explain. Because I can’t always explain. And because most of the time people are looking less for explanations and more for things to argue with. Again if you don’t believe me by now that I know my limits, nothing I do will convince you.

Also it’s pretty condescending for all these other people to decide for me what I ought to be doing. There’s plenty I want to learn. So far, I’ve had to fight to get taught any of it. But when others decide I need to learn something, I’d better. This shows no respect for my choices and my body.

I’ve been living in this body for a long time. I have:

  • Severe osteoporosis
  • Stress fractures of vertebrae
  • Healed hip stress fracture
  • Congenital myasthenic syndrome
  • Autistic catatonia
  • Severe adrenal insufficiency
  • Gastroparesis
  • Feeding tubes
  • Many other things

It’s difficult to understand these things and more put together at the best of times. I may not be a doctor or nurse but I know when something is taxing too many abilities, when something hurts, when something seems wrong or dangerous. I’ve learned most of it the hard way. I have an extreme tendency towards overdoing things and to push me harder in that direction can put my health and life in danger. Yes, even if what you’re asking me to do feels minor. Little things add up, and what looks little to you may be huge to me for reasons you’ve never even considered.

If everything I’ve said and done doesn’t convince you I am motivated and know my body, nothing will. I have nothing more to prove. I’m not going to do something just because someone else has decided I ought to. It doesn’t matter who. It doesn’t matter if they have good motivations. Enough is enough. It’s disrespectful and dangerous to continue to tell me what I ought to do in order to fit your definition of independent or ready to go home or willing to learn.

I’m done. You either take me as I am, or you don’t. You either trust my ability as a fellow human being to make my own decisions, or you don’t. You either respect me and my decisions, or you don’t. If everything I’ve done by now doesn’t convince you, nothing I say or do will. So let me learn at my own pace the skills I have decided I need, listen to me rather than trying to find new ways to persuade me why I ought to do as you want, and trust that I have valid reasons for my decisions even if they aren’t the same decisions you would make. Don’t make me tell you this conversation is over, because I will if I have to.

Listening to everyone else over the warnings of my own body is what got me into the hospital. I broke two vertebrae and continued to do physical labor with an unhealed fracture. I went out and did errands with a bad case of pneumonia until I almost passed out. I let people treat me like they always knew better. I ain’t doin’ that again.

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 Death & Mortality Series

Medicalizing eating and drinking is more sinister than it sounds.

In my last post, I discussed the way food and water are medicalized when you get them through a feeding tube.  But the way I discussed it could’ve given the wrong impression.  I discussed it mostly in terms of its emotional effects.  The way it changes your relationship to food.  The absurdity of having to argue with doctors about how much water you’re allowed to drink.  When you have no medical reason for fluid restriction or any other actual excuse for them to act like they have a right to control something so basic.  The importance of eating food that you enjoy, even if you’re eating it through a tube.  The importance of food being emotional, sensory, cultural, all kinds of things besides medical.

Mel eating by holding an orange feeding syringe with an olive-green soup mixture going into a J-tube on hir belly.
Eating.  This is one way that I eat. That’s soup made from putting beans and vegetables (black beans, butternut squash, spinach, and guacamole, I think — possibly with some soy sauce and Sriracha) in a blender.  I’m eating it with syringes because there’s a clog in the line on my feeding bag, or I’d be eating it with a feeding pump.  Either way, it’s just eating, not medical treatment.  Food is not medical treatment no matter how the food gets into your body.

But in all of that discussion, I never discussed the most sinister part of food and water being considered medical.

When food and water become medical treatments, they become optional.  They become something you can refuse.  They become something a doctor, or an ethics committee (what an Orwellian name, given the way they so frequently treat disabled people), can decide is futile or unnecessary or medically inadvisable or something else along those lines.

In other words, when food and water become a medical treatment, then it becomes much easier to kill you by withholding them.

I filled out a living will awhile back.  Living wills are disturbing in all kinds of ways that most people don’t appreciate.  Most people see living wills as a wonderful way for people to indicate their future choices about medical treatments.  Most people don’t see the ways they’re set up to make it much easier to choose death than to choose life with a disability.  And to subtly nudge you in that general direction.  They’re not the value-neutral documents most people assume they are.  They already have values built into them that may not be the same values as the person filling them out.

I could obviously go on at quite some length about living wills. I’m not going to do it here though.  I want to talk about something very specific.

The structure of the living will I filled out basically went like this:  “If you needed this treatment in order to survive, would you want to die?”  The part that goes this treatment starts out with fairly noninvasive stuff.  And progresses through a series of medical treatments, in order from what the creators of the document consider least drastic to most drastic.

Anyway, the first treatment I remember having to answer questions about was a feeding tube.  Which does make sense within their structure:  Feeding tubes are pretty noninvasive and completely reversible.

But it disturbs me.

It disturbs me that a feeding tube is considered something you should have to decide whether to live or die about.

It disturbs me that food and water are medical.

Because that’s where it all starts.

Where food and water are medical.

Mouth Magazine reported once on a woman who’d had a stroke.  She had a living will saying she wouldn’t want continued medical treatment if she had brain damage.  She changed her mind once she had brain damage.  She wasn’t considered competent to change her mind.  They decided food and water were medical treatments — in her case, she didn’t even need a feeding tube.  She tried desperately to get food and water, but they prevented her from doing so, saying they were honoring her wishes and that she was incompetent to make her own decisions.

Mouth Magazine had this to say about itself at one point:

During the last ten years, it is fair to say, Mouth has lowered the level of discourse on the subject of the helping system. About time, too.

Mouth brings the conversation down to street level, where well-intentioned “special” programs wreak havoc in the lives of ordinary people. People talk about calling a spade a spade. We call Jack Kevorkian a serial killer. And when maggots outnumber nurses’ aides at what others call a “care facility,” we call it a hellhole. We say it out loud: if special education is so darned special, every kid in every school ought to have the benefit of it.

About Mouth Magazine

In that spirit, I will call what they did to that woman exactly what it was:  murder.

All the bullshit about honoring her wishes is bullshit.  She clearly wanted to be alive.  To declare someone incompetent to decide they want to survive, to declare someone incompetent to fucking change their mind… that’s some high-order bullshit.  Dangerous bullshit.  Deadly, murderous bullshit.

And this bullshit, and this kind of murder, happens daily.  One person I know who worked in the medical system said the disturbing thing to her was that she was complicit in at least one murder without being aware of it.  Because of the ways they warp your thinking to make it seem like something, anything is going on other than the intentional killing of another human being.

Except it is the intentional killing of another human being.

And often, it starts with the medicalization of food and water.

Food and water are not medical treatments.

Food and water don’t become medical treatments just because they take an unusual route into your body.

A feeding tube is just like having another mouth.  It’s just that the mouth is located in an odd spot.  That’s all it is.  It’s a mouth that opens directly into your stomach or your intestine, instead of going down your esophagus first.  (Then there’s NG and NJ tubes, which do go down your esophagus, but they’re still just another slightly unusual route for food to take into your body.)

There is nothing about a feeding tube that truly makes food and water medical treatments.

There is nothing about disability, including brain damage, that truly makes food and water medical treatments.

This reclassification exists in part to make it easier to kill us.  Not that every single person who medicalizes food and water has that in mind.  But that’s part of the point behind the reasoning’s existence.  And even when it’s not initially intended that way.  Anyone who wants to use it that way can easily just pick up the situation and use it in exactly that way.  Once food and water become a medical treatment, starvation and dehydration become withholding medical treatment rather than starving or dehydrating someone.

You can’t even have an honest conversation about the issues involved here, when everything’s replaced with a medical euphemism.  Because we’re actually talking about murder (the intentional killing of another human being) and suicide (someone intentionally killing themselves).  And you can debate the ethics of murder or suicide in various circumstances till the cows come home.  But you can’t even hold the debate in an honest or straightforward fashion when murder and suicide or even just killing are replaced with withholding medical treatment.

And when food and water are only considered medical treatment for a certain class of person (usually some subgroup of disabled people), I call that deadly ableism.  

So medicalizing food and water is never just an annoyance or nuisance.  It’s like a weapon:  Someone can absentmindedly carry it into a room and leave it lying around for some reason that has nothing to do with killing.  But then someone else can pick it up and seriously injure or kill you with it.  So it’s never not sinister, disturbing, and dangerous. 

And that’s important to always keep in mind:  Once something fundamental to survival is considered medical treatment, it can always be withheld much more easily without raising many eyebrows.  Hell, people who advocate withholding it can paint themselves as champions of your human rights rather than people trying to prevent you from exercising your human right to, well, food and water.  It makes it way easier to turn everything on its head without anyone noticing what’s going on.

Mel with headphones on, smiling and holding up a green coffee mug of kombucha with a feeding syringe sticking out of it.
Drinking kombucha and listening to country music doesn’t become a medical treatment just because a feeding tube and syringe are involved.

This post is part of my Death & Mortality Series.  Please read my introduction to my Death & Mortality series if you can, to understand the context I write this in.  Thank you.

Posted in Death & Mortality Series

Everyone’s death belongs to them alone: What octopuses and hospice can have in common…

A sculpture of a skull with an octopus sitting on it.
Death and octopuses, who knew there was a cool sculpture that combined them?

 

This post is part of my Death & Mortality Series.  Please read my introduction to my Death & Mortality series if you can, to understand the context I write this in.  Thank you.

There’s a problem I’ve seen over and over in people like hospice workers (and this post is gonna focus on hospice, but it can be applied more broadly).  And it’s one of the things that made me reluctant to out myself as a Deathling.  Because there’s so many people with this problem, in Deathling-type communities, that I didn’t want to associate myself with it.  Because this problem can kill people.  And no matter how you feel about death personally, that’s not okay.

To describe it, though, I’m gonna start somewhere weird.  I’ve been reading a book about octopuses.  Or more about the author and her experiences with octopuses and thoughts about them.  I’ve been struggling to find a way to articulate the problem here.  And a passage from her book really helped, even though it has nothing whatsoever to do with either hospice or death.

It has to do with wild-caught octopuses captured for aquariums. But understand that I didn’t choose this passage because of my own views on octopuses.  Nor about Ken’s views.  Rather, because of the way Ken approaches his views on the matter.  Ken is an aquarium worker who, among many other aspects to his job, helps with transporting new octopuses to the aquarium.  The author asked him his opinions on catching wild octopuses, and the following is what he said (bolding in this and any other quote on this page is my own, added for emphasis):

How does he feel about capturing animals in the wild and sending them to a life in captivity? He has no regrets. “They’re ambassadors from the wild,” he said. “Unless people know about and see these animals, there will be no stewardship for octopuses in the wild. So knowing they are going to accredited institutions, where they are going to be loved, where people will see the animal in its glory—that’s good, and it makes me happy. She’ll live a long, good life—longer than in the wild.”

Montgomery, Sy. The Soul of an Octopus: A Surprising Exploration into the Wonder of Consciousness (pp. 188-189). Atria Books. Kindle Edition.

He might be right that he’s doing the right thing.  He might be wrong.  I’m not even going to go there.  That’s not why I brought this up.

He’s come to a conclusion about why it’s okay with him for this to happen.  It may be a good conclusion.  A reasonable conclusion.  A justifiable conclusion.  A right conclusion.  He might be making the right decision.  That’s still not the point.

The point is, it’s his conclusion that, for instance, the octopus is an ambassador.

The thing about ambassadors.  Real life ambassadors.  The literal kind who exist and do work that’s mysterious to me but has something to do with representing their countries to other countries.  Is they choose to be ambassadors.

It’s not the octopus deciding to be an ambassador for her species.

The author, Sy Montgomery, a volunteer at the aquarium, does not explore this matter any further or deeper.

But it’s an exact illustration of something that happens with many hospice workers and other people in the death industry.  And I’ve never heard anyone discuss this in public.  But I’ve seen it enough times to know what I’m looking at when I do.  And I know it’s horribly dangerous in a context where you’re working with dying people.

Deathlings like to think and talk about our relationships with death.  Most of us feel that we fear death less than we used to.  Or don’t fear it at all.  Most of us see death as embedded in life itself, as a necessary part of the cycle of life, even as potentially quite beautiful.

Those of us who’ve spent much time around actual death and dying, whether our own or other people’s, might also notice the power of Death.  The sacredness of it.  A depth and beauty and meaning that can’t be put into words or fit into blog posts.  When Death is near, either for you or someone else, the world can become transparent to love, transparent to light.  There is power and meaning there, on a level that even many atheists and agnostics will acknowledge as sacred on some level, for lack of a better term.

And there’s probably at least one blog post on what happens when you notice all that but forget to give Death the respect She deserves.  But I’m not gonna go there right now.  Right now, I want to talk about what happens to a lot of people who work in hospice or similar industries, who are exposed to a lot of death and develop something close to this understanding of it.  An understanding that I largely share — but as with the aquarium, that’s not the point.

The point is… there’s a level on which your personal revelations about death don’t matter.  The realizations you’ve come to.  The way they’ve altered your entire life for the better.  The way you see your job differently, as a sacred duty of sorts, now.  How you’ve accepted the deaths of your patients or clients, how that’s changed you, and them, and your relationshp to future patients.  All of these things that matter deeply to you.

They also don’t matter one whit on another level.

Just like octopuses don’t choose to be ambassadors.  People don’t choose to develop a terminal illness.  Most wild octopuses will never face the possibility of being caught and put in aquariums.  Everyone will die one day.  But these situations share one important thing in common.

The octopus’s viewpoint on captivity will have fuck-all to do with Ken’s reasons, or rationalizations, for participating in her capture.  The octopus has her own viewpoint.  And nobody stops much to consider her viewpoint in all of this.  They’re too busy with their own.

Everyone’s death is their own.

That’s my main point.  I’m gonna go off on a very long tangent.  But I do have a main point.  So I’m gonna repeat it, in bold, a LOT:

Everyone’s death is their own.

Everyone’s death is their own.

Everyone’s death is their own.

Everyone’s death is their own.

Everyone’s death is their own.

Everyone’s death is their own.

Everyone’s death is their own.

Everyone’s death is their own.  Everyone’s death belongs to them.  Everyone’s relationship to death, and to Death, is theirs.  Theirs.  Not yours.  Theirs.

That means it is not your job to bring their views of death more into alignment with yours.

That means it is not your job to sit there accepting and reveling in the beauty of their death for them when that may not be how they feel, or want to feel, at all.

And it is not your job to teach them that death is wonderful and beautiful and a part of life and everything else that Deathlings often believe.

That sacredness associated with Death… a lot of people don’t seem to realize this, or realize it fully enough to put it into practice, but coming into contact with that on a regular basis comes with responsibilities.  One of which is a deep respect for Death.  But there’s too many to count.  One, though, is not to mess with someone else’s experience of Death, even if their experience is not the one you want them to be having.

I don’t mean you should never talk about your viewpoint.

But sick and dying people can be very vulnerable.  This includes having reduced defenses against unwanted outside ideas.  Which includes your ideas.  Which means you have to approach any job involving death with the utmost caution and care.

And you have to stay on the other side of a firm line in the sand. And you have to be the one drawing that line.  Your patient may not be capable of drawing it, or aware that it needs to be drawn.  It’s not like terminal illness comes with an automatic manual given to you that tells you you’re vulnerable to accidentally absorbing the opinions of hospice workers.  Or what to do if you do notice.

Thsi may seem like a weird thing for me to have such an adamant opinion about.  It’s because no matter how it feels to you, this can lead to situations that are downright sinister.

Talking someone into accepting death sounds so wonderful, especially to Deathlings who usually have a particular view on death acceptance.  It sounds like the right thing to do.

But you could be talking someone into making a different decision about their medical treatment than they would’ve decided otherwise.

They may decide against a medical treatment that would give them a little more time in the world, time they really very much want.  The hospice system is already structured to discourage life-sustaining medical treatment, so it wouldn’t take much to tip someone over the edge into making a decision that’s against what they want at the end of their life.

They may decide against a medical treatment that would not make them live longer, but might help them live more the way they want to in their time left.

They may accept a medical treatment that they know is likely to result in them dying sooner.

They may accept the idea that they need to die on a certain schedule.  (I know that sounds weird, but this happens in hospice a lot when deaths are treated as  lot more planned than actual death tends to work.  And when you’re barely hanging onto life to begin with, you can end up having more conscious control over your time of death than you’d imagine someone would.)

They may make decisions that have more to do with the convenience of their hospice institution, than with their own desires and choices.  And these decisions may end up justified in the name of accepting and coming to terms with one’s own death.

They may start receiving a lot of praise and encouragement for adopting views similar to yours, with all kinds of consequences for all kinds of decisions they may make.

You might not understand their viewpoint.  You might decide that all decisions to prolong life in situations you wouldn’t want your life prolonged, are actually because of an irrational fear of death that must be overcome in order to be at peace.  And then you might persuade them and wear them down.  Until they are making very different decisions than the ones in their own best interest by their own values.

Just because you can’t fathom a reason someone would want to see Alzheimer’s through to the end and be kept alive at all costs, doesn’t mean there aren’t good reasons for this that have nothing to do with fearing death.

And.  Even if it does have to do with an irrational fear of death.  That is part of their relationship with death.  It’s not your place to decide why they ought to be making their decisions, any more than it’s your place to decide what decisions they ought to be making.

And no, I’m not saying nobody should share their opinions, or persuade anyone of anything, or try to change other people’s minds, ever.  But if you’re a hospice worker or healthcare professional, you’re in a position of great authority and power over your patients.  And that power comes with a responsibility to do your level best not to misuse it.  Which includes learning to guard against accidental misuses of power.

And when you’re dealing with the end of someone’s life, the potential for great harm from the misuse of that power is only amplified.  The more that potential is there, the harder you have to work not to misuse it.  And believe me, if you’re working on the end of the death industry where you’re dealing with the last days of the living, you’ve got more power than you are probably even aware of.

Michelle storms by with the crash cart. “They want everything done. She used the wrong language; she gave them an alternative. She said we can keep going.” She means Shreya, the resident. Shreya is in Michelle’s room. She comes out and goes up to the Pulmonary fellow. She looks concerned that she has done the wrong thing. I can hear her say, “Lactate’s seventeen, bicarb drip.” She opened a door she’s trying to close. They don’t know how to talk to families. They don’t know how to tell them it’s okay to stop. Doctors will almost never tell the family the patient is dying. Nurses will. Nurses have little phrases. Dana says, “actively dying.” Lori will say, “it’s irreversible.” When they ask me how the patient is doing and it’s bad, I’ll say, “You should prepare yourself for the worst.” Some nurses will try and sell DNR orders. They’ll ask, “Would you want to have chest compressions?” and they’ll clasp their fingers together and move their upper body like a jackhammer, or, “Would you want to be shocked?” and pretend they’re holding paddles onto a chest and then jerk their body like they got Tasered.

Kelly, James. Where Night Is Day: The World of the ICU (The Culture and Politics of Health Care Work) (pp. 76-77). Cornell University Press. Kindle Edition.

The above passage was written by an ICU nurse who has no problem with the practice of ‘guiding’ families in the direction of DNR/DNI (Do Not Resuscitate/Do Not Intubate) orders.

It’s a relatively common point of view that runs like this: It’s cruel to prolong life when the only thing a person is doing is suffering.  Quality of life is more important than quantity of life.  Patients and families who don’t choose DNR/DNI are either:

  • irrationally afraid of death
  • driven by strict religious beliefs (and religious beliefs that contradict the medical consensus are treated as a bad thing in this kind of context)
  • unaware how severely disabled a person often is after a resuscitation
  • unaware they’re “allowed to let go”
  • unaware of what a resuscitation actually looks like (pretty brutal, often)
  • unaware of the low success rates of resuscitation (because on TV shows resuscitation almost always works, whereas in real life it almost always doesn’t, or doesn’t work the way people expect it to)

So they genuinely believe they are sparing a person needless suffering by using the above tactics talk to people into DNR/DNI orders.  They think people who “want everything done” are simply ignorant of the medical realities.

My mother, who has coded before and probably will again (we have an inherited neuromuscular condition, hers is more severe at this point in our lives), does not have a DNR.

Doctors and nurses are always surprised, because she was a respiratory therapist for decades.  They say they’d expect any former medical professional to want a DNR order.

She says it’s because she’s a former medical professional that she does not have a DNR order.  She wants to live, is in her seventies, and knows firsthand the extreme bias in the medical professioin against both elderly and disabled people.  She’s had doctors refuse to treat her because of her age.  She knows we already have things stacked against us and that a DNR would be dangerous.

Laura Hershey, an activist from the Independent Living Movement (a branch of disability rights mostly made up of physically disabled people), had a friend in the movement who got talked into a DNR in this manner.  This is Laura’s account of what happened, written November 2, 1999:

Attitudes Towards Disability Prove Almost Lethal

A doctor entered, on his rounds.  […]  Becky and I both jumped in to tell him that Ginny wanted to talk to him about the DNR, that we thought she wants it revoked.

For the next fifteen minutes, the four of us engaged in a conversation that was difficult, both mechanically and emotionally. Through a painstaking exchange of yes-no questions, nods, scratchy notes, and lip-reading, Ginny conveyed her desire for every effort to save her life.

The doctor heard this message, was willing to hear it; but his obvious biases made him subtly resistant. Here’s how he posed one question to Ginny: “Would you want to be put on a respirator?” Ginny responded with a fearful, uncertain look. I instantly insisted on rephrasing the question like this: “If you couldn’t breathe on your own, would you want them to use a respirator to save your life, rather than letting you die?” Still with an apprehensive expression, Ginny nevertheless nodded, yes.

By the end of the conversation, Ginny had indicated unequivocally that she would want ventilation if necessary to save her life; and that she would want attempts made to start her heart if it stopped beating. The doctor agreed to remove the DNR order immediately.

Ginny had been weak with pneumonia, and with a trach making communication difficult, and they talked her into signing a DNR she didn’t want to sign.

I can say from firsthand experience that being sick and weak really does make it hard to fight off other people’s opinions of what is best for you.  This is even true when you’re 100% sure you disagree.  When I was hospitalized for aspiration pneumonia (and was also weak from malnutrition) and they were trying hard to talk me out of a feeding tube — I knew I wanted the feeding tube.  And without having had a lot of people in my corner, I’m not sure I would’ve been able to hold out for survival much longer.  Being weak even simply on a physical level makes it very hard to fight these things.

Ginny’s story continues, by the way.  This happens:

That was about a month ago. A lot has changed since then, mostly for the better. Ginny regained her voice, and began growing stronger once the infection left her lungs. She has repeatedly stated her intention to go on living, in front of a variety of witnesses. Her friends have stayed in touch with her, and her situation.

About three weeks after my visit with her, I heard that Ginny’s gradual recovery was abruptly interrupted when she went into respiratory failure. Emergency measures saved her life, and her recovery now continues.

Ginny would not have survived this if the DNR she was coerced into signing had stayed in place.

If you ever doubt the power your opinions might have, think of Ginny.  Pneumonia made her weak enough to have trouble fending off other people’s opinions.  It’s very likely that whatever nurse or doctor talked her into signing the DNR, used subtle persuasion of the sort described in that book by the ICU nurse.  It doesn’t take much persuasion or pressure when you’re already vulnerable.

I was simply walking down the hall of the hospital last time I was there, and there was a group of residents speaking to an attending.  The conversation I overheard was alarming.  They’d saved the life of a cardiac patient.  He was set to go home soon, without major complications.  The patient was extremely happy about this.  The attending was very unhappy about this and wanted to tell the residents why.

So the attending explained that while the man was going home without complications, that wasn’t the only possible outcome. And he didn’t think the man’s family should’ve chosen to tell the doctors to save his life.  He said it was possible the man could’ve ended up with a severe disability.  And therefore, it would’ve been a better decision to let the man die even though his life was saved and he was extremely happy with this outcome.

Medical professionals frequently believe this stuff is morally neutral information.  That in trying to persuade people to choose death over life, they are simply giving people the facts.  The thing is, you can choose which facts to give people, and what manner to present those facts in, and “giving someone the facts” turns into an act of persuasion.  And you don’t even have to mean to do so, for this to happen.

If You’re Interested In Power & Control…

Power Tools by Dave Hingsburger
Power Tools by Dave Hingsburger

Anyone interested in the use and misuse of power in human services professions, could do a lot worse than reading Dave Hingsburger’s book, Power Tools.  I always plug this book.  It’s extremely short and easy to read, but contains a lot of important information on how to recognize your power over other people and how to do your best to avoid misusing it.  It’s available from Diverse City Press. Or Amazon.

He also wrote another book of the same size, shape, and potency, called First Contact.  It’s about communicating with people with (presumed) profound cognitive impairments.  And it’s also well within the topic of this post, given that this level of cognitive impairment is often the fate that medical professionals are trying to save us from when they push DNRs at us.  You might want to pick that one up at the same time you get Power Tools.  They go well together, and both of them contain real-world wisdom that applies to a lot of everyday life situations beyond the ones explicitly described in the book.

First Contact: Charting Inner Space (Thoughts about establishing contact with people who have significant developmental disabilities) by Dave Hingsburger
First Contact by Dave Hingsburger

While I’m shamelessly plugging Hingsburger’s work, he has a blog called Of Battered Aspect.  And there’s a longer review of both Power Tools and First Contact on the website of the old disability rights magazine, Ragged Edge, called Same, Different, Human.  A quote from the review that mirrors my thoughts on these books:

The subject matter may appear limited to the service systems concerned with people with intellectual impairments, and Hingsburger’s focus is the individual rather than society. Nonetheless, I commend these books to you.

I read Dave Hingsburger as an ethicist. Not an ivory-tower Ivy League ethicist, mind you, but rather one who worries how to live well amid the blood, the shit, and the chains that surround him. Instead of offering moral axioms from some fake-objective standpoint and then applying them to whitewashed situations, he acknowledges the ways in which the commitments he has made and the messy situations in which he finds himself shape his moral development and his moral outlook.

Many of the other writers on my shelf take a political approach to the problems of power and powerlessness, to the problem of disability, asking how communities, organizations, nations should act. What does justice demand? they ask. How can we address injustice?

Hingsburger’s stance is more ethical than political, though it is also concerned with disability. How, he asks, should I, an individual, respond to the people around me? Very often, the people around him, the people to whom he is responding, are disabled people. It’s not that he pretends injustice away, or that he treats it as irrelevant; it’s just that even when he addresses injustice, he confronts it in an ethical sense, as an individual. Even when he addresses the politics of disability — the self-advocacy movement — he is concerned with his relationship to it.

His primary ethical concern is interpersonal, and his rule is awareness: awareness of the moral risk in any important action and awareness of one another. “People don’t hurt people. People hurt things,” he quotes Dick Sobsey as saying (First Contact, p. 20). And he acknowledges that such awareness, such self-knowledge, is much more difficult than it looks.

Like Cal Montgomery, the author of the review, I can’t stop recommending these books.  To the point I keep a supply of multiple copies each because people walk off with them and forget to return them.

Now back to your regularly scheduled blog post on death and octopuses…

When I was writing this post, I tried to Google statistics on resuscitation. I found a news article alarmed me.  Not because of the statistics, but because of the way it was  point of the article was to inform people that resuscitation in real life is not like in the movies, either in terms of statistics, outcomes, or the level of violence it does to the person’s body.  But the article made it impossible for me to understand the statistics.

See, every time it mentioned death, it mentioned severe disability in the same breath.  I was trying to look up survival rates.  But it was so ambiguously worded that I couldn’t tell whether survival with a severe neurological impairment requiring lifelong care counted as survival for the purposes of the article.  And no matter what you think of the “quality of life” issues involved (I, like Laura Hershey and many other disability rights activists, am extremely wary of that phrase), being alive and unconscious is still being alive.  And there’s plenty of new evidence that people presumed unconscious based on outward responsiveness are not always unconscious at all.  Which may horrify you in completely different ways, but it’s still being alive.  And I never did figure out what the statistics in the article meant.

Disability is often considered a fate worse than death.  And while I consider the fear of death and the fear of disabiliy deeply intertwined, many Deathlings, and many hospice workers, have conquered one without touching the other at all.  An extreme fear of disability, combined with a lack of fear of death, can make people view death as the answer to a type of disability they greatly fear.

This is an extremely common perspective among medical professionals, including hospice workers.  And it’s the entire point behind DNRs, living wills, and the like.  These are not documents that were created to offer a neutral set of choices to people.  They were created to make it easier to say “This is the level of disability at which I would rather die.”  You can use them to say other things, but there’s pressure not to, and it’s harder to get such wishes upheld in any circumstances where someone disputes your wish to stay alive.  It’s much easier to use a living will to die than to use it to live.

Anyway, medical professionals have been shown to rate disabled people’s quality of life lower than we rate it ourselves.  There’s a very jargon-heavy paper called Quality of Life, Disability, and Hedonic Psychology (that’s a PDF link) that deals with the topic of disability and quality of life (abbreviated QOL in the article) in a fair bit of depth.

One belief about QOL has been very widely demonstrated. Nondisabled people believe that the QOL of people who live with disabilities is extremely low. This belief will be termed the standard view of the QOL of disabled people.  The standard view is faced by an apparent falsification: When disabled people report about their own QOL, they rate it only slightly lower than when nondisabled people self-report their own QOL. This produces the anomaly of the QOL of disabled people (Amundson 2005). The anomaly is the pair of conflicting assertions: the standard view on the one hand, and the conflicting self-reports ofdisabled people on the other.

[…]

In fact, nondisabled health care professionals judge the QOL of disabled people to be even lower than the judgments made by nondisabled people who are not health care professionals (Duckworth 1988; Brillhart, Jay, and Wyers 1990; Bach and Tilton 1994; Gerhart et al. 1994; Albrecht and Devlieger 1999).

[…]

If hedonics researchers believed that disabled people were kidding themselves about their own QOL, nothing would stop them from saying it. I therefore propose that we ask them who’s right about the QOL of disabled people. Does hedonic research support the standard view that disabled people have an intrinsically low QOL? Or is there evidence that the standard view is mistaken, and the disabled people who report a high QOL are correct when they do so? Hedonic psychologists may not have the last word in the debate, but their contribution must be considered. The results are these: according to the experimental results of hedonic psychology, the judgments of nondisabled commentators about the QOL of disabled people are far more likely to be mistaken than are the self-reports of disabled people.  

So basically, nondisabled people in general assume that disabled people are much unhappier than we are and have very little in the way of ‘quality of life’.  And medical professionals judge our quality of life to be even lower than your average nondisabled person judges our quality of life to be.  Meanwhile, disabled people are roughly as happy or unhappy as nondisabled people (there’s many possible reasons for our quality of life to rate slightly lower that don’t actually reflect disability as much as the way it’s tested, but I don’t have the time or space to get into all the details), and certainly much happier than either nondisabled people in general, or medical professionals, assume we are.

So if you’re a medical or hospice professional, advising dying people on life and death decisions involving disability, you’re also likely to be judging our quality of life much lower than it actually is.  And as a medical professional, you’re more likely to be biased in that area than someone who isn’t a medical professional.  The presence of a known bias, like the presence of power, requires much more increased carefulness to be taken with how you wield power around people.

And the above is just one major way this can go wrong.  It’s a way I and many other disability right activists are highly familiar with, which is why I was able to go into so much depth.  I could really go on all day.  But hopefully it’s enough to show you there are dangers you might not even be aware of.

So now that I’ve tried to get way too much information crammed into one blog post, the basic point I want to make?

Everyone’s death is their own.

Being accepting of death is a wonderful thing, in my eyes.  But there are many different ways of accepting death.  And no matter how valuable it is to you that you have accepted death, you have to be really careful as a healthcare worker, not to impose your own ideas about death on people who might not want them.  However an octopus feels about captivity is the business of the octopus, and how a dying person feels about their own death is the business of the dying person.

Everyone’s death is their own.

Given the biases of healthcare professionals around disability, and the power they have over disabled people (and dying people are generally either disabled or about to become disabled), it’s especially important for them to keep this in mind.  It’s very easy for death acceptance in these circumstances to become something much more sinister.

Everyone’s death is their own.

But it’s also a matter of respect:  People’s death is deeply personal and for lack of a better word, sacred.  And people’s own death belongs to them.  It’s not yours to mold into a shape you find more fitting.  No matter how appealing your own beliefs about death are to you.  The other person might have very good reasons for beliefs that mean something to them.  

Everyone’s death is their own.

There really is an idealized death, or an idealized set of deaths, that is pushed wholesale on hospice patients.  People who work in hospice often come to absorb this view of death, and of how death should happen.  But actual patients of hospice may have very different experiences.  Experiences they are afraid to even bring up out loud, because of the power relationships inolved.

Everyone’s death is their own.

And if you care about a person, you want to meet them where they’re at.  It’s impossible to truly know another person, to even begin to understand them, if all you can do when you see them is look in the mirror.  And when you get too wrapped up in your own reflection, you can’t see anyone else, you can’t know anyone else, you can’t connect with anyone else.  And if you can’t see who someone is even a little, you certainly can’t accurately perceive their relationship with death.  Nor can you respond to it in a way that’s even halfway adequate.

I’ll leave you with an excerpt from Dave Hingsburger’s First Contact:

When considering making contact with people who have multiple disabilities – those who are considered to be so significantly mentally disabled that they are in a “vegetative” (that’s what it’s called) state – there is a huge obstacle. Prejudice. Yours. Mine. Ours. Against them. The difficulty here is that prejudice will feel like pity. You may be overwhelmed by a sense of hopelessness first, and then, if you examine the feeling long enough, terror.

They can’t be “like us” because then the logical extension of that is that they must be “feeling in there” and what they are feeling in there is what we’d be feeling in there – desperation, hopelessness, isolation, loneliness. The misuse of your sense of identification with the person inside that body will lead you to think horrible thoughts.

Dangerous even.

“I’d rather be dead than be like that.”

“If I was like that I’d like to be smothered.”

Well, back off. This isn’t about you. Catching a first glimpse of a soul inside a body that is so different from your own can be frightening, true. But it can, if you work hard enough, be exhilarating. I know, I know, I know, you have to “walk a mile in their moccasins.” The temptation is to engage in an incredible waste of time and psychological energy – spending time imagining what it would be like to be you inside them. How egocentric is that?

The issue is coming to understand and to get to know what it’s like to be them, in them. That’s the joy of contact, of connection. It allows us other perspectives. The placing of ourselves inside someone else and then imagining what it would be like, is not learning – it’s like masturbation but without the stickiness. And while it’s fun, and it is fun, it’s not particularly valuable.

And it gets in the way.

How can you make contact with someone when all you see reflected in their eyes is your sad face? Get out of the way. Understand that you are you. You are only you. Now look again, look past your own reflection and what do you see?

The answer?

Some one else.

Cool, huh? Even cooler is to discover who that person is. To do this you need to step by prejudice. Please, please, please, don’t delude yourself into thinking that you don’t harbour anti-disability sentiments inside your heart. Please don’t say, “but my child…” “but my best friend is…” or even “but I’m…” We everyone of us is prejudiced against those who are different. Awareness is the first step.

And that is why obtaining a copy of those two books is so very worth it.

And remember — everyone’s death is their own.  If you work with dying people, don’t stare at your own reflection.  Get out of your own way and deal with them, and their relationship with death, on their own terms, not yours.  And whatever you do, don’t use their death as a vehicle for your own desire to be close to the beautiful side of death.  I promise it will be better for you, and more importantly, for them.

Everyone’s death is their own.

 

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 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 Being human, joy, medical, music

Who am I when I can’t do…?

Mel wearing headphones with shadows falling over parts of hir face.
Mel wearing headphones with shadows falling over parts of hir face.

I hate being reduced to a pile of medical problems.

I don’t care what guise it comes under, either. I’m not your intriguing case. I’m not a two-dimensional prop in your medical detective story. Or your medical melodrama about brave people who buck the system and discover the truth. Or your very private psychodramas you want to act out with me as little more then a living doll.  And that includes “positive” versions of originally medical ideas — if you reduce me to any diagnosis, no matter how positive you think you’ve changed it into, you’re still reducing me down to something I’m not comfortable being reduced down to. It’s why I’m not comfortable with communities that’ve basically grown out of a single medical label, no matter how they believe they’ve transformed it.  At any rate, if you want to reduce me to medical crap, whether you think it’s good or bad — I’m not fucking interested. If you reduce me or my life to medical issues you’ll rapidly find yourself being ignored or tolerated at best.

But sometimes it seems like things close in, and all there is time and energy to think about is the next medical thing. And I start wondering, is this all there is to me? Is my life just one medical crisis to the next and holding myself together with strings and baling wire in the meantime? You don’t want to know the sanitary conditions I’m living in right now, the compromises I’ve been forced to make for survival. If you’re physically disabled you probably have some idea either from your own life or that of your friends. The shit we do to survive and live free at the same time. It’s criminal that we’re forced to live this way. I have an elderly family member I probably inherited my congenital myasthenia from, they describe crawling around the house when they can’t walk, and can’t get up off the floor, and you don’t want to know how they drive a car sometimes. They’ve coded before, I worry about it happening far from help next time.

Anyway, eventually the world closes in and all you can think about is medical shit. Explaining it to people over and over again. Doing medical shit you need to do to survive. And it feels like there’s nothing left, nothing left to you, everything’s gone.

It’s scary.

And it doesn’t help when that’s essentially how lots of people see you. As just a pile of flesh with a lot of medical problems. You start to go crazy. You start to wonder if there ever was anything more to who you are. Medical shit can fuck with your head in huge ways.

The medical way of seeing us is incomplete. It doesn’t include the things that make us people. Those core things that really matter. So if this shit gets into your head, you can’t see those things about yourself either.

The important parts of the world never go away. They are literally everywhere, embedded in everything. Including us. When we can’t feel them or perceive them, it’s always because something is blocking our view. Not because they’ve gone anywhere.

It’s easy to get caught up in the bullshit we are fed, too. Like that we aren’t real people, not the kind that matter, unless we can make a contribution that fits in with capitalism. Like something that pays money. And people with lots of medical shit that takes over our lives to this extent are seldom fully employed. So that can eat at us too, that knowledge that whatever we contribute to the world will never be good enough to count.

But we do contribute valuable things to the world. Just existing is its own contribution, but people contribute more than our existence. Each one of us is uniquely positioned to make very specific contributions to society, whether we are trying to or not, whether we are aware of it or not. Real contributions often go unnoticed even by the people making them.

And we get so caught up on what we do, that things get unpleasant when all we can do is whatever it takes medically to ensure our continued survival. Who am I when this is all I can do?

At first I fall back on connections to place, people, family, culture. I am a child of Redwood Terrace. I am an Okie and a Minnesota Swede. I am a Californian. The landscape of California, from the cliffs and ocean of the Monterey Bay to the bare yellow grass hills with oak trees, to the redwoods of San Mateo County and Santa Cruz County to the converted swamp / desert / farmland of the San Joaquin Valley to the paved-over orchards of Silicon Valley, these things are burned into my DNA almost, they go in so deep. The graves of my recent ancestors, in Shafter and Wasco cemeteries, places likely to become uninhabitable soon. My father’s grave in the Siskiyous. All the objects my father gave me that point like a giant beacon to who he was, who he is now that he’s merged with love and become something different.

These things are important. Connections are important. And no matter how difficult and dysfunctional our families get, family is always a part of you, a connection you can’t sever, part of who you are. I try to remember my grandfather’s violin, to remind me family is family and the worst things about it can still yield surprising moments of love and beauty.

I’m still the bleakest optimist I know. I can look into a pile of shit and find something worthwhile, but I still don’t shy away from it being a pile of shit. This confuses people. I continue to believe this skill will become vital to the survival of lots of people in the world today, though. Discounting the good or pretending the bad isn’t there will lead to disaster.

Anyway, family, culture, place, they all provide a firmer foundation than what you can do at any given moment. No matter how messed up that family, culture, or place is. But there’s something far more basic and far more important:

You are a small piece of the world. A very particular small piece of the world. You have a place, that’s specific to you and who you are. Everything from your best qualities to your worst faults are part of this. You are connected to everything and everyone else. Who you are and what you do, matters. You are always, always connected to the deepest parts of reality. They are a part of you, you are a part of them. You may not be able to feel that at any given time, but all that means is something’s obscuring your view. This is always there.

You are always so fucking much more than a set of categories, shitty circumstances, or ideas. And more than a set of medical problems or any other kind of problems. You are exactly no more and no less than a tiny expression of the deepest and most beautiful parts of the world.

And if we have anything we are meant to do, it’s to express that the most clearly with the least bullshit obscuring it as we can, which may be the most difficult thing in the world to do, but also the most important. But that’s not something we can or should be constantly freaking out about. Just something to keep in mind.

And sometimes the hardest times bring out the most depth of beauty in the world in weird and unexpected ways. Other times they’re just hard. But the world is a strange place. And you do have an exact and important place within it that nobody else can fill, no matter what anyone tells you, even yourself.This little piece of the world is who you are no matter what you can or can’t do. And this little piece of the world may be little but it’s also important.

I was writing this post, it’s taken me days. And I came across the perfect song to express part of what I’m talking about. I’m a huge Grace Vanderwaal fan for reasons. And she wrote this song that’s about those amazing parts of the world we can just forget are there entirely. And — those amazing parts of the world — we are a part of them, they are a part of us, and that’s who we really are, who we remain, regardless of what we can or can’t do at any given time.

So here’s the music video then the lyrics:

Sit right here, chillin’, level low
Close your eyes and just let it flow
Right next to me I hear your heart beat, beat
When the dial turns up and the music starts playing
We don’t realize in this society
Doesn’t matter how your hair looks or what they are thinking
Just, just what we are finding

Tap your foot and listen in
Ignore the world, let the music cave in
Close your phone and breathe in the air
You’ll soon realize that there’s something that is
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh (hey)
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh

The whole crowd seems to like me now
‘Cause they think I’m cool but back when I was in school
They found it very easy to hate me
Funny how always these times are changing
Back then it was so easy to shatter
But now in the end it doesn’t really matter

Tap your foot and listen in
Ignore the world, let the music cave in
Close your phone and breathe in the air
You’ll soon realize that there’s something that is
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh (hey)
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh

All of the talk, and the talk from ya
Won’t even matter when the lights come up
All of the talk, and the talk from ya, hey
Open your eyes and just wake up
Do all the things that will matter to ya
Open your eyes and just wake up, woah

Tap your foot and listen in
Ignore the world, let the music cave in
Close your phone and breathe in the air
You’ll soon realize that there’s something that is
So much more than this
It is what it is
So much more than this

You’ll soon realize that there’s something that is
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh

Wow, that kid has more kitten wisdom packed into her than you normally see in a child.  She reminds me so much of Igor, right down to the ability to unfailingly be exactly who she is, even when she doesn’t appear to know.  (Kitten wisdom is what I call the kind of wisdom that often comes with youth rather than the kind that sometimes grows with age.  And Igor and Grace Vanderwaal have a ton of it.  And remind me of each other in ways I can’t articulate.  Also some of her dancing in that video is perfect.)  And I love that she writes songs about being a child her age rather than just singing artificially weird children’s songs written by adults, or just adult songs.  It’s weird, though, that this should be unusual enough to comment on.

Mel wearing headphones.
Mel wearing headphones again.

Anyway, that place that’s so much more than this is always right here.  And we are always so much more than this, so much more than we’re told we are, so much more than a role or a category or a collection of frigging problems and labels and crap.  Because we’re not separated from that place, ever, we just sometimes feel like we are.  But it’s always there, and we’re always part of it.  The stuff that makes us think we’re not, is all confusion and illusion of various sorts.

redwood terrace fungus 01
A tree with moss and fungus in Redwood Terrace photographed by my best friend.