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 disability rights, fear, Friday / vendredi / viernes / fredag / Frietag, Things I try to hide

Cuz I’m Blind (Viernes de Baja Visión: Low Vision Friday)

Mel's eyeballs pointing different directions due to congenital myasthenic syndrome.
Mel’s eyeballs, already pointing in different directions despite it being fairly early in the day.

My friend told me that facing my fears was gonna be important. I think she was right. Here’s one of them.

Here’s one of my weirder fears: Acknowledging that I have low vision, am partially sighted, partially blind, whatever you want to call it.

Understand…

  • I use a screenreader.
  • I learned emacs so I could use emacspeak to run my old laptop without ever having to see the screen. I would go long periods of doing all of my computer and online work using a full screenreader.
  • More recently, I have had extreme trouble reading anything visually longer than a couple paragraphs. I use a screenreader for that.
  • I can’t see cars even when they’re about to hit me.
  • I have been pulled out of traffic by both friends and strangers.
  • My ex insisted on holding my hand when I crossed the street due to my inability to process the visual information quickly enough to be safe around moving cars. I have a cognitive doppelgänger named Anne, and her significant other refers to parking lots as “Anne death traps” for the same reason. She’s been hit before.
  • When i was growing up, I never fell out of a tree, which I could feel with my whole body. But on flat ground, I often tripped or even fell due in part to being unable to see obstacles or feel my body properly. I did better with walking sticks or similar. (Also true of Anne.)
  • Doctors have checkboxed “low vision” on forms for me before without asking me, just knowing my vision problems.
  • I just can’t see obstacles fast enough to react to them. I walk straight into things even when I do see them, because even when I see them I don’t process visual information fast enough.
  • I can identify objects by touch far better than sight.
  • I can feel my way around much more reliably for understanding and navigating my environment, than I can see my way around. Seeing is like a backup sense at best.
  • I fall less in the dark than I do in the light because visual information is often just a distraction to me.
  • Sometimes I take my glasses off so I can navigate the world better.
  • I used to have an entire system where in new places, I’d grab one end of a scarf or sock and have a friend or caregiver grab the other, and then I wouldn’t bash into things and fall over nearly as much, and could find my way around rapidly.
  • I often stop and feel things with my hands or feet to understand them.
  • I understand things best through the physical movement of my body through space. I loved being able to feel the sidewalk through my power wheelchair even though the visual part of driving it around was grueling (another reason for a cane, whether or not I end up needing the powerchair again, which I suspect I do for longer distances).
  • I’ve been comparing my visual problems to blind people for a really long time.
  • I’ve been trying to convince people that spatial is not visual, because I am so very spatial that I used to have an automatic map of everywhere I’d ever been, yet so very much not a visual thinker and I often used the comparison of “the way blind people do spatial things”.
  • People often assume I’m blind without even asking, just from how I respond to my environment.

“Cuz I’m blind” has become my go-to reply when people ask me why I didn’t see something, which is pretty much always. Except, it’s not a joke, I really do count as low vision. I’ve been afraid to face it and some of its implications, but it’s true. And my second mom has told me that only living with me for six months has taught her exactly how bad my eyesight is.

It’s not conventionally awful, mind you. Without my glasses I can’t see well at all, but my corrected vision is almost normal, or was last time I got checked.

But.

I basically function like I have various forms of visual agnosias. That’s where you might have 20/20 vision (or might not), but you can’t understand what you see, or parts of what you see.

I also have really weird visual effects that I think are from a combination of overload and synesthesia. It makes everything a fragmented distorted mess. In new places, it can be severe enough that I understand nothing of what I see but get horrible motion sickness from all the moving pieces and no visual horizon. At least that’s how it was explained to me by a researcher once. I always had the visual distortions, but only after I became capable of motion sickness in my teens, did I start vomiting uncontrollably after traveling. Before that I could play with my vision almost like a toy and didn’t find the distortions distressing.

I have migraines and temporal lobe epilepsy. Each of those can cause its own temporary visual issues, from visual agnosia to various spots and lines and blobs and blank spots in your vision. One of my neurologists, the migraine specialist, suspects I am in status migraine aura. Status means constant. Migraine means the large set of things that can happen (not even close to just a headache) as a result of migraine headaches, anything from mild visual distortions to things that resemble a stroke if you don’t know what’s going on. Aura is the part of the migraine that isn’t the headache and usually comes before a headache, so includes all the visual distortions that come with migraines.

So — whether he’s right or not about the source of this being a constant migraine aura I don’t know but it sounds plausible — my visual field is filled up with lots of clutter that isn’t part of the real world or distorts the real world. There’s spots. There’s blank spots. There’s little black squares. There’s squiggly pastel-colored lines. There’s stuff that looks like water — both like looking through water up through a swimming pool, and like looking through light sprinkling rain falling diagonally. There’s all kinds of things that get in the way of seeing anything at all. There’s something that looks like rainbow-colored contour maps that can cover my entire visual field, and same with blobs of colored cloud.

Then there’s seizures. When I have them, I can hallucinate just about anything I’ve seen before in the past. Like one time it was the Dark Mark from Harry Potter, another time it was a doll from Japan that belonged to my mother. Both moved in a characteristic way. It’s rare that I have full-on visual hallucinations like that, but they happen during seizures sometimes.

Things can look like they’re moving when they’re not. Things can look like they’re stopped when they’re moving. Things can look like they are stopped in one place, then stopped in a new place, then stopped in a new place. Things can look like they are just pieces like a Cubist painting all pointing different ways. Things can look like all kinds of things. And they look quite interesting a lot of the time, some of this may help me in my art, but they aren’t really good for seeing.

Anyway.

Every time I go out, I risk falling, and cars are a hazard, and yet I have been reluctant to get a white cane.

I’m getting a white cane.

I’ve been afraid of the classic low vision problem of taking out your white cane to signal drivers the need for safety, but then pulling out a book and getting yelled at by people who don’t know that blind and low vision people can sometimes read. (And somehow think it’s their business. Why it’s their business, I don’t know. Even if it were somehow Against The Rules, it’s not like anyone’s getting hurt by the fact that disability isn’t as black and white as people want to make it.)

Understand — this means that ableism has filled my life so much that I was risking my life rather than risk the social embarrassment of getting yelled at by people who don’t understand my vision, don’t need to understand my vision, and shouldn’t get themselves involved.

I’ve heard of people doing the same thing with wheelchairs. I never had a problem with wheelchairs.

But growing up, I was always being told I “looked blind”. I asked, at one point, what people meant. Apparently it’s my posture, the fact I wear tinted glasses inside, the fact that I tend to stare straight ahead and not blink a lot, and the fact that I don’t react quickly to most kinds of visual information. (Small objects moving at a certain speed are a strong suit of mine. So like, if I try to play basketball the ball looks like a bunch of fragmented pieces, but if I play badminton or ping-pong it’s just the right size and speed I can be reasonably good at the sport.)

Anyway.

I’ve realized that every piece of adaptive equipment I already have is necessary, and there are more kinds I need.

If I don’t use my walker indoors, I fall. And yet I forget to use my walker. (Not this week much. Not with my hip possibly fractured. But usually. I’m trying to get better.)

And I forget to use my feeding pump properly.

And a million other things.

So I’m gonna try to learn basic cane travel. And at minimum I’m gonna get a signal cane for crossing the street. I’ve broken bones crossing the street trying to dodge cars I can’t see already. I don’t need to test how often I can survive that.

In addition to the agnosia-like stuff, by the way, myasthenia presents its own visual complications. There’s something called pseudomyopia which means my vision gets randomly and intermittently blurry. Then there’s also the fact that my eye muscles weaken so that my eyes point both out to the sides and one of them points downwards, resulting in double vision at best and terrible depth perception.

I also have the much more standard myopia and astigmatism.

But I need to get used to the idea that I’m low-vision, for real, not just something I say to laugh off the fact that I’m uncomfortable with physically not being able to see obvious things that are right in front of me.

Because I am.

And I need to start adapting to that and stop being scared.

People will think what they want to think no matter what I do. I might as well try and live the life I’m supposed to live, not the life other people want for me. It’s not like not having a cane has worked in terms of not getting treated as if I’m blind.

Cuz I’m blind. Or low vision. Or whatever. And it apparently shows, and always to some extent has.

I just don’t feel like hiding anymore.

Posted in crossroads, death, Developmental disability, disability rights, family, history, Self-advocacy, Temporal Lobe Epilepsy

Crossroads #05 (Self-Advocacy Sunday)

A walkway leads out into a desert within pink sand, with a sign with arrows pointing both directions sideways. Letters matching the pink sand read "Crossroads."
Crossroads in the California desert.

Dear Cheryl,

Your bone resonance exists unseen
By those who can only
Read the words
On gravestones
Without feeling
The bones underneath

The grave of my dad’s aunt Voicy — he was close to her, she was more like a sister in age (my dad was 1941-2014). May they both rest in peace, and her husband as well. The gravestone is in Rose Bud, White County, Arkansas.
My great-aunt Voicy.
(I think. I’m faceblind and
some memorial websites get her and her
mom confused. I honored both of them
in my name change.)

They would have it
That you were a crip
And only a crip
You almost believed them
And were probably afraid
To say what you may have suspected

But your bones know better
And so do I

Spoken from the bone,
Mel

Posted in crossroads, Developmental disability, disability rights, letters, Self-advocacy

Crossroads #04 (Self-Advocacy Sunday)

A walkway leads out into a desert within pink sand, with a sign with arrows pointing both directions sideways. Letters matching the pink sand read "Crossroads."
Crossroads in the California desert.
Yellow hill with oak trees in Henry Coe State Park.
Image courtesy Wild Recovery.

Dear Cheryl,

I heard you speaking
The language of Ideas
But I felt your bones stirring
In the language of Resonant Bones
You called yourself an ally
But if you speak Resonant Bone
Only an Idea
Could convince you
You’re not one of us
(Because you are)
And that is why
I’ve written you the invitation
And not someone else
I’ll explain more later
I promise

Spoken from the bone,
Mel

Madrone trees near a trail in Henry Coe State Park.
Image courtesy Wild Recovery.

Posted in crossroads, Developmental disability, disability rights, family, from the bone, Okies, Self-advocacy

Crossroads #03 (Self-Advocacy Sunday)

A walkway leads out into a desert within pink sand, with a sign with arrows pointing both directions sideways. Letters matching the pink sand read "Crossroads."
Crossroads in the California desert.
A small area of forest in California's Siskiyou Mountain range near the Oregon border. This being the cemetery where my father was buried according to his wishes -- in just a pine box and shroud with no funeral ceremony.
Small California mountain forest cemetery that contains my father’s bones.

Dear Cheryl,

The bones of my Okie ancestors
Lie in the cemeteries
Of Wasco
Of Shafter
Of many towns
Throughout Tulare and Kern Counties
The rest of the San Joaquin Valley
Stretching back
To Oklahoma and Arkansas

A collection of Baggs gravestones from mostly San Joaquin Valley, California cemeteries.
A collection of Baggs gravestones from mostly San Joaquin Valley, California cemeteries. One (upper right) is my dad’s in the Siskiyous.

The bones of my Okie ancestors
Dance to a country beat
And my living bones
Dance in resonance
Without trying

Most people understand this
At least in part
Most people
Most people understand
The ties of blood
This kind of ancestry

Dry grass hills and trees outside Bakersfield, California. I feel these hills in my bones and there are bones in hills like these.

Even if they can’t feel their bones
Shaking the yellow-grass California hills
Bothering the roots of the lone oak trees
Living endlessly forgotten
Under converted deserts
And redwood forests
Manzanita and madrone
Mudslide and earthquake and fire

These are the bones in my life
You are most likely to understand
So they are the first I will hand you
Please think hard about them
But don’t forget
To listen in your own bones
For the song

The other song.

Spoken from the bone,
Mel

Posted in crossroads, Developmental disability, Developmental disability service system, disability rights, from the bone, Self-advocacy

Crossroads #01 (Self-Advocacy Sunday)

A walkway leads out into a desert within pink sand, with a sign with arrows pointing both directions sideways. Letters matching the pink sand read "Crossroads."
Crossroads in the California desert.

Dear Cheryl,

There is a lonely crossroad
Somewhere between here and nowhere

Where the crows wheel in circles
And call to each other
In their hidden language
But never talk to us
And never land

Where the light is always twilight
Though it range from purple to blue
And sometimes a murky greyish tan

Where a paved road with wheelchair access
Meets a dirt footpath without
Where the Country of Ideas
Borders the Country of Resonant Bones

And it is that borderland
And that crossroads
Where we must meet
We must both translate
We must both learn to listen in a foreign tongue

And as speaking to the dead
Is no problem
In this land outside of time
I have no fear
That you will stand me up
For this strange date

You’ll be too curious
You’ll begin to feel
A strange resonant song
In that part of your bones
Where your body anchors your soul
And you won’t be able to help dancing
To the tune
That already haunts your twilight dreams

So come to the crossroads of Bones and Ideas
You’ll find me there
Awaiting you
As long as it takes

Spoken from the bone,
Mel

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

Accessibility is a waste of time.

I was told this today.

Cognitive accessibility is a waste of time.

Explaining my communication style is a waste of time.

Attempting to correct communication misunderstandings is a waste of time.

The only good use of my time is what my social worker says it is.

She gets to define what topics are worthy of conversation and what topics are not.

I don’t get to define anything.

She gets to define how much time we spend together planning my discharge.

She is talking about my options at discharge.

I am not allowed to return to my own home if I want services. Howard has declared it unsafe for staff. It was not unsafe for staff the entire time they were giving me services there up until now, including times when I have been in the hospital. It is suddenly unsafe for staff so they can force me to use a cleaning service they have decided I need to use and have been trying to get me to use for months now. (I did use that cleaning service to clean out an area that was genuinely unsafe. When evaluated, only that area was considered unsafe, not my entire apartment. Howard has seized on the idea of declaring my apartment unsafe for other reasons. Also the part of my apartment that was unsafe was only unsafe because of the state someone else left it in, it was never something I was considered to be responsible for.)

I had by the way been told it was an access issue (not being able to get around with my walker) until it suddenly and unexpectedly became a “safety” issue. I guess safety issues are a bigger deal. They didn’t care about my safety when they were fucking with and probably causing my stress fractures so I have no reason to assume they care now.

So I set up a situation where I would be living with someone else while I recover from my injuries and illness. We’d been expecting to have to do that anyway because I’m in terrible shape and the hospital wants me out anyway. I’m leaving Tuesday.

Anyway, I’ve lived in this person’s house before, with a bed larger than my bed is now. They now claim that my bed will make her house unsafe for staff. They also claim there is no seating in her house for staff. None of this is true.

At any rate, not only do my social workers get to control conversations, but they apparently get to control things about the placement of my bed. And Howard gets to decide whether my bed is safe. Howard helped me buy and transport this bed in the past and were only too happy to help. Now I am being told I will get the minimal help possible and then only if I toe the line in all these weird ways that have nothing to do with safety.

(The seating thing is an ongoing thing they bring up at the house I am staying at. They don’t like the house’s inhabitant. That’s what’s really happening. They have never given me crap about seating at my house which is far worse than the house I’ll be staying at. Also whenever offered seating they refuse it. Including at the house I’ll be staying at. There is more than adequate seating but they refuse to use it and then claim there’s no seating because they refuse to sit down.)

So there’s another agency I get services from. I am told they also have a problem with serving me at the house I’ll be staying at. They have always served me there before. I am told, again, the problem is the bed, and that if Howard doesn’t approve the bed, this other agency will not either. We have contacted the other agency, which has assured us that this is not the case whatsoever, they are fine serving me as far as they know, and if they weren’t okay with my bed, they’d just use the other bed in the house, which houses another of their clients who receives services from them with no problem whether my bed is there or not.

At any rate, it seems like people are playing games with me again.

And it seems like I am yet again being penalized for having developmental disabilities.

Because guess what?

When you sign on to work with people with developmental disabilities?

You’re signing on to work with people who take more time to process information, who talk around topics instead of being able to come up with the words for the main topic straight away (and in doing so take a lot more time to talk than usual), who have trouble with emergency speech if we have speech at all, who have trouble with language, who have trouble using the typical set of social skills, who have trouble with timing, etc.

And you know what the solution is not?

The solution is not to treat the person like their attempts to explain themselves or the barriers to access they face are wastes of time, like the only possible good thing they could be doing with their time is not wasting one second of yours. Where you, of course, get to define what’s a waste of time and what isn’t, what’s important and what isn’t, etc.

Because it’s disgusting to treat another human being this way.

I’m another human being. I’m not that different from you, no matter who you are. I have faults and I have good points. And I don’t deserve to be treated like this.

And yes, I know you think I treat you badly. I don’t. There’s a difference between being unable to do certain social skills the typical way and not giving a fuck and the difference matters. Especially when you’re paid money to at least act like you give a fuck whether you do or not.

Howard social workers have to serve clients who try to hit them.

I don’t try to hit my social workers, at Howard or elsewhere.

If they’re obligated to come and meet with and be respectful towards people who hit them, they’re obligated to do the same for me.

No matter how much my communication and language offend them.

By the way the more emergency speech I have, the worse my communication skills are and the more likely I’ll do things people find offensive. Same with the more people are in the room, the more stress they put me under, the more their “communication” is not really communication at all but more an attempt to tell me what to do and control my actions, etc.

There’s people in the world who can’t even imagine why I’m treated this way. They have trouble believing that there are people who see me as rude and difficult.

It’s mostly because they don’t come into interactions with me with the goal of getting me to do what they want of me. And they don’t expect me to be something I’m not.

And you know, after nearly 40 years of total anguish that I can’t be what highly controlling people want me to be, I’ve had enough. I can’t be what they want me to be. I’ve tried. I can’t. If they can’t deal with me as I am, they just have to deal with it.

No, that doesn’t mean I’m not accountable for my actions or that I’ll never change. It just means that I won’t change at the whim of people who only want me to change to make me easier to control.

I’ve had enough of that for a lifetime.

Being in the hospital sometimes makes you think about what actually matters in life.

And pleasing social workers is one of those things that you don’t want to spend the rest of your life trying to do.

If you can help at all especially if you’re in the Burlington area, please see my recent post (no, I don’t know where it is, but it should be easy to find) because I might need a lot more help than I thought I would if I end up being cut loose by lots of people whose job it is to actually help me. There’s a post with contact info for Laura. Contacting me won’t do much good. My abilities are still haphazard and I’m writing when I can where I can and not always reading.

Oh also they basically still won’t help me with anything, even if I jump through all their hoops, unless I carry out physical elements of the tasks involved. So I’d still need to be physically participating. Or else hiring a cleaning service, because everyone on disability can afford to do that! Also if I don’t hire a cleaning service or do my own cleaning or whatever, they can withdraw services at any time if they decide my apartment isn’t clean enough. So now I’ll get penalized in one more way for having the disabilities that Howard exists to help people deal with, and that Howard has been helping with for most of the pas 13 years. Because I can neither do these things, nor afford to hire someone to do them. (They know I can’t afford it yet they keep bringing it up.)

And that’s just one piece of the tangle. It’s exhausting just to think about. Please don’t write me “easy” ways this could all happen. If you have actual ideas write to Laura. I’m exhausted and it’s gonna be hard enough recovering from this hospital stay without additional crap to deal with and think about, whether that’s agency BS or other things. And sometimes even the most well-intentioned advice is way too much to deal with.

Anyway this is pretty naked cognitive ableism. That’s what it is when you tell someone that access doesn’t matter, understanding the way their communication works doesn’t matter, and every topic that matters to them is a waste of your time. I have developmental disabilities. This isn’t going away. There seems to be a whole lot of that sort of wishful thinking going on around here — “This isn’t convenient, so maybe it’ll disappear if we make Mel feel shitty enough about it being attached to hir.” Also a lot of old=boys-network-style corruption with social service agencies around here. Like the time (maybe 7 years ago?) I and some other people stood up for my right to get a life-saving treatment I was more than qualified for, at the hospital, and my Howard case manager after it was over chastised me for “jeopardizing Howard’s good relations with the hospital”. Yes, she actually said that, and that was one of the better social workers I’ve had. And that factors into how all these agencies work together, too.

i’m a human being. FFS.

Posted in Developmental disability, disability rights, Self-advocacy

When I suddenly can’t do something I could always do, SOMETHING’S WRONG.

Right now my baseline walking ability is pretty damn good for someone with spinal stress fractures. On an average day I can take my walker out in the hallway and do seven laps in a row. I get sore but I could usually push on further if I had to. I am not even necessarily out of breath after all that.

One day recently I did two laps with extreme difficulty and then my legs got wobbly and almost gave out. It felt similar to a congenital myasthenic syndrome sort of thing, muscular and not back related. I’d also been feeling weird all over my body, and getting disoriented and having unusual emotional reactions.

I did what I’ve been taught to do. I reported all this to the nearest medical professional. I don’t remember who she was, not that it matters because the point of this post isn’t to put her on the spot. But her reaction was very typical of medical professionals in general when dealing with me. Some of it was a general attitude people have towards patients, but watching how others are treated, I get more of it than other patients who don’t have developmental disabilities. So there’s extra biases at work for me.

Anyway, when confronted with this situation you’d expect a medical professional to ask if I was okay, or ask further questions to figure out how I was feeling, or try to find out why I suddenly couldn’t do something that was coming so easily most of the time these days.

Instead I got, loosely paraphrased, “That’s what happens when you stay in bed all day.” Lest anyone think I’m some kind of hospital couch potato, I’d been in bed that day because I felt sick, not because I’d been making a long habit of it.

Let me put this plainly: This is a dangerous level of rudeness. It turned out I had low potassium. This was one of the first signs. It is almost always true that if I have sudden extreme difficulty doing something I could do easily just one day before, something is going wrong with my body. It is wrong both factually and morally to, within a matter of seconds, jump to the conclusion that I just need to work harder or that I’ve done something to cause the problem.

It’s also mean and puts me in danger. It’s dangerous because it makes people less likely to look for whatever is really causing the problem, which is often something that could turn serious untreated. It’s also dangerous because it makes me less likely to ask for help or inform anyone next time. And it’s mean because it treats me different than you’d treat a friend or expect to be treated yourself if you suddenly had trouble doing something you can always do.

There’s very little compassion in the response I got, but it’s pretty standard towards DD people with health problems. It’s one reason that rather than slacking, we tend overall towards pushing ourselves until we drop. Many end up in the hospital. Many die. Often from conditions that are treatable if caught early. That’s one reason I take these dismissive responses so seriously. It might not seem like a lot but the overall consequences can be extreme.

So please, if I say I’m having trouble, treat me like I’m having trouble and try to find out why. Don’t treat me like I must’ve done something to cause it and need to be pushed to work harder. And as always, I’m saying this on behalf of whole classes of people who get treated this way, not just myself. It applies to all of us. But I’m asking for myself, too. I don’t deserve to be treated like this either.