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.

t

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, 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.

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 need time. This is about accessibility.

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

I need time.

It takes me time to understand things.

It takes me time to make words.

It takes me time to respond to things.

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

I need time.

Nothing changes this.

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

I literally walk faster than I run.

My brain is the same way kind of.

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

Many times people assume based on the end product.

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

I get to complex thoughts slowly usually.

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

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

None of those things are true.

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

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

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

I get confused easily.

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

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

All of this is disability related.

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

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

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

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

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

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

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

Accessibility is a disability rights idea.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I need time.

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

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

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

Posted in medical, Self-advocacy

I am Neville Longbottom.

His friends taught him to stand up for himself.

They did something he thought was wrong.

He stood up to them.

They belittled him.

He said they told him to stand up to people.

They said “Yes, but we didn’t mean stand up to us.”

Everyone is telling me to listen to my body.

Yesterday my body told me it was trashed and barely hanging on.

Yesterday my body told me it was inches away from the whole medical house of cards falling in.

Yesterday my body told me that this was a thin line, not a slow slope, and that if things went really really bad, it’d happen fast.

So basically by the time anyone else saw it, it’d be way past time to have done something about it days ago.

I’ve been weak.

I’ve been dizzy.

I’ve been in excruciating pain.

My back’s been doing warning-signal type things.

I’ve had alarm bells going off.

I’ve had difficulty breathing that doesn’t even require doing anything, I just get weak and breathing feels like it takes a lot of work. (This is always a bad thing and often a sign my myasthenia or adrenal insufficiency or both are acting up, possibly combined or as a result of other things.)

THINGS ARE WRONG.

Oh and by the way STRESS IS BAD FOR ME.

Physical and emotional stress both make adrenal insufficiency worse and I’m on a lower dose of my meds than usual and not used to this dose yet (so not used to gauging how much stress I can take).

And I was having random stress responses that were… suspicious. (Suspicious as signs of something actually wrong because of the ways they don’t act. I have no good way of describing this in words.)

And I started getting the shits.

And I couldn’t bolus feed even close to the normal amount I can get away with, even though no amount is really good. So I couldn’t use that to replace the food I’m not getting.

And.

And.

And.

And.

And.

I could go on, if I had words, and brain, and all that. (BTW this means this story won’t be told as well or as thoroughly as it could be or ought to be.)

A lot is going wrong, and my body is sending pretty clear signals.

And I’m learning, as always, which signals to listen to.

So I knew something was wrong and I knew there were things I just couldn’t do.

And sometimes those things change, minute to minute, let alone any other thing.

Anyway.

I was having a shitty day, and then I learned that Howard wouldn’t let me eat, and the stress really set in. I tried every stress reduction technique I knew, and only some helped.

And mind you — everyone else seemed to be having at least a shitty day if not shittier.

But anyway.

By night.

Things happened.

I don’t want to describe the whole situation, doesn’t matter for this.

I was exhausted.

Two days ago I was doing laps around the ward, more than ever before.

Yesterday, for the first time, I did less than I’d done the day before. In fact i did none.

I spent a lot of time, on and off, just lying there really weak not moving.

They’d given me a hang-bag of potassium in the morning but assured me at some point that if it was really really bad my doctors would come by and say something. Everyone keeps saying my doctors not coming by a lot means good things.

This morning I found this result which is what made the potassium bag appear yesterday:

Electrolytes test result for May 30: Sodium with yellow highlight and one down arrow: 128 (should be 136-145), Potassium with red highlight and two down arrows 2.9 (should be 3.5-5.0), Chloride with yellow highlight and one down arrow: 77 (should be 96-110), CO2 with yellow highlight and one up arrow 37 (should be 22-32).

But I didn’t know that then. Nobody had told me there was anything too alarming about my potassium results. They’d been trying J-tube supplements for a little bit but those haven’t always worked in the past. Apparently for whatever reason the IV potassium through my port isn’t enough either because this is this morning’s labs:

Electrolytes test result for May 31: Sodium with yellow highlight and one down arrow: 130 (should be 136-145), Potassium with red highlight and two down arrows 1.9 (should be 3.5-5.0), Chloride: 96 (should be 96-110), CO2: 27 (should be 22-32).

So some other things are better, but potassium is worse.

Potassium has been slowly creeping down since before it went low, let alone critical. Everyone’s been telling me not to pay attention to the slow creep. At home, I would see a slow creep and turn it around with a slight amount of coconut water — not too much, not too little. I can’t do that here. I don’t have that level of control. I don’t know whether coconut water would’ve prevented this before it got low this time. But it very well could. And everyone was busy “not worrying about it”. (What I do isn’t worrying about it, it’s preventing something before it happens. There’s a difference.)

But at any rate, potassium going critical can certainly put a dent in my body’s ability to do stuff, let alone without getting enough food (which itself is probably contributing to the potassium).

Let alone all the other crap going on.

So I had lots of good reason for feeling like crap.

Anyway.

So.

Last night.

With all that going on.

And knowing the food situation, and seeming to understand it.

And having seen my leaky J-tube all the whole time I’ve been here.

And many other things.

My J-tube leaks and a bunch of other things. Leaks, soaks through, burns.

I need to go to the bathroom.

My pain levels go haywire.

All these things at once.

I call the nurse.

I get…

Incredulous laughter at the idea I need a walker to get to the bathroom, along with something like “You’re not really gonna use that walker, are you?”

No help on the way to the bathroom.

Come back, lie down, need to get plugged back into feeding bag.

Get plugged into feeding bag.

Then she says something like “I’m putting you to work.”

She’s gesturing at a bunch of drain sponges.

I try to treat it as a joke.

“You’re not really saying you’re gonna make me change my own dressing?”

Then it becomes an argument.

And she gets really tense about it.

And it’s like, telling me I’ll never be able to manage at home if I never manage to do this, and also that there’s no such thing as being able to do something sometimes and not others, and lots of other things.

And then demanding explanations.

She didn’t want an explanation.

She would never believe any explanation I gave.

So I told her so.

I told her, “You guys are the ones who told me to listen to my body no matter what anyone says. I like you but that means you too. And I don’t owe you any explanation, you wouldn’t believe me even if I could explain it perfectly, which I fucking well can’t right now.” Only it may’ve had the word ‘fucking’ in there more times than that.

I’m not taking this anymore.

If I say I can’t do something, it’s for a reason.

And we actually went through a long conversation I didn’t recount, in which she rudely dismissed anything I said no matter how verifiably real it was.

Shit like when I said “I’m trying to conserve my energy” and she blew me off. So when I finally said “Remember I was having trouble breathing earlier today” to try to impress upon her how serious it was for me to waste energy, she said something like “Oh don’t even start with that shit.”

So any amount of “fucking”s were well-deserved by that point.

Lots of things happened. Our interactions were better the rest of the night.

But that was wrong.

And.

I’ve been bending over backwards to accommodate everything about this place and being treated like I’m the one doing something wrong.

I’ve been pushing myself — not too hard, but pushing myself — more than adequately by everyone’s description. And when one day — one day — I could do less than expected, the immediate response was an attempt to manipulate me into doing more “for my own good” and then treating me like shit for resisting. The same people who have been telling me all along to listen to my body. I listened, they got mad at me for it.

I am Neville Longbottom.

I want to keep being Neville Longbottom. He turned out all right.

And I need to, if I want to survive a system that tells me my body is wrong when any time I get a clear signal of “Something’s badly wrong,” I turn out to be right. And that the answer to a situation where I’m overworked to the breaking point is always do more.

“Listen to your body, dear, you know best,” sounds well and good until I do it when the person wants me to be able to do more. Then all hell breaks loose. At this point, I’m gonna keep saying “I can’t means I can’t, whether or not I can explain exactly how it works, and I’m not gonna wait until I can explain it to you to refuse to do something I know is bad for me.”

And I’m worn out, worn out. I don’t know what I’ll do once I see a doctor (provided one comes in), because I’m putting all my spare energy into getting to that point), because I’ve needed all the energy I’ve conserved and I feel like I’m burning reserves I don’t have just to get me through until whenever the doctor comes. Which is unpredictable as fuck and nobody gives you clear answers.

I’m hungry.

And I’m Neville.