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 Being human, joy, medical, music

Who am I when I can’t do…?

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

I hate being reduced to a pile of medical problems.

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

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

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

It’s scary.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So here’s the music video then the lyrics:

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

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

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

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

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

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

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

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

Mel wearing headphones.
Mel wearing headphones again.

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

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