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

What my home means to me: I have so much to lose.

Nearly every night, I walk around my apartment in the dark. It’s easier to find my footing without the distraction of eyesight. I can feel my legs, my feet, the floor, the ground, the things that lie beneath. I touch the walls to better feel the building itself. Like all buildings, it has a personality. I find and touch the oldest parts of the building, wooden pillars in seemingly random places. They stretch from the bottom of the ground floor to the ceiling of the second floor.

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I explore my whole apartment in the dark, all the time. These days, sometimes I cry. People don’t understand what this place means to me. It’s more than any random home, which would mean a good deal already. I have so much more to lose than I used to know was possible.

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The dark allows an intimacy with the house that would be impossible in other circumstances. I can feel the way it wants to be all the things the best houses are. It wants to be a home, a real home. It wants people to live in it. It wants those people to be happy. It wants to protect them and make sure they’re safe. It wants them to be comfortable. It wants to be a haven, a place of refuge, a place of joy. And it genuinely loves the people who live in it.

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I’ve never lived in a house that was a home. Let alone one that wanted to be a home with every fiber of its being. I grew up in a house that wanted to start fights, to make violence worse, to scare and hurt and trap and imprison. It was such an unpleasant place that even from a young age I’d put myself through things I hated, like sleepovers, as long as they’d let me avoid the house. I never understood homesickness, only its opposite: dread that I’d be trapped there forever. I still have nightmares not about people or events but about being trapped alone in that house, unable to get away from it for the rest of my life. So I’m well aware that not all houses have the personality to be a true home, and how lucky I am to have found one.

I don’t normally watch horror, even cheesy horror. But I did watch every episode of Buffy. And only one truly got under my skin. It had a monster that lived in a hospital. You could only see it if you were crazy, delirious, or neurologically impaired. It sat on the ceiling above your bed and terrorized you while everyone else thought you were just hallucinating. Then it ate you.

Of all the things they showed on Buffy, that’s why I usually sleep with all the lights on. Embarrassing but true. When the lights go off, my brain starts imagining that damned ceiling monster.

The dark has always been a refuge from the pain, nausea, and chaos I associate with vision. It’s a place of calm and belonging. A place where things make sense and move slowly enough to understand. Where I can pick up all the shards of a world that comes through so fast it shatters inside my head. And just stare at the stained glass colors if that’s what happens. Or slowly put each piece back together in something like its original shape, so that something I saw earlier finally makes sense. The darkness itself feels alive, a warm and friendly presence: “Here in the shadows where everything blends, the darkness and me are the closest of friends.”

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This house makes it so I can be in the dark again, comfortably, and not be afraid of the ceiling monster.  The house protects me and makes me aware I am protected, even from my own fears.

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I’m not sure how often I’ve said this explicitly on this blog, but religion is central in my life and redwood forests are central to my religion. The connection I have with the particular forest I was born in, Redwood Terrace, is important to my ability to practice my religion. And while it’s true that this connection exists no matter where I go, it’s also true that it’s much easier to be immediately aware of that connection in some places than others. Like a lot of things in this realm, there’s no real way to explain it, things just work like that.

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Anyway, I find it easy to feel connected with Redwood Terrace from my apartment. Something is different about the ground around this building compared to other places around here. The apartment itself seems to help me connect with Redwood Terrace, as well as it seeming to have developed a friendship and connection with my best friend’s house, which has a similar personality.  All of these things mean I’m more able to practice my religion in this particular home than in any other home I’ve lived in. And that matters, even if I can’t explain to you how it works or why.

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I’ve got so much more to lose than I ever imagined was possible. It’s no longer just a matter of having my own place. I have my own place that I love and that loves me back. That puts things on a whole different level. I have an entire relationship with this place. It would be bad enough if they were trying to make me leave my home, any home I’ve ever had before. After all, there is never a valid reason to make anyone leave their home on the basis of disability. But now it’s not just my freedom I could lose. It’s an entire relationship with a place that matters more to me than I can explain.

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Nobody should ever have to explain or justify why they want to live in their own home. Nobody should ever be told that a perfectly normal desire to live at home is
in any way deviant, selfish, stubborn, denial, unrealistic, or unreasonable. And our society should no more accept this response to disability than we accept Victorian workhouses as a solution to poverty.

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But even if I shouldn’t have to explain, I do want to explain what my home means to me. Having my own place already means a lot more to me than I can express. And I’m not really able to write about that at the same time as writing about my specific home. But having a specific home I’m very attached to, means I have so much more to lose.

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You can’t just replace one home with another, any more than you can replace a human being with another. Even when you don’t mind moving, even when you choose to move, the new place is not the same as the old place. It should always be a choice.

It’s wrong for one person to have the power over another that it takes to tell them their disability means they have to leave their home. But it’s also wrong to use that power if you have it. And each person who uses this power over another human being, bears some of the responsibility for the damage done. And there’s always damage. Taken as a whole, the removal of disabled people from our homes is a large-scale crime against humanity.

Participating in such a thing isn’t trivial, no matter what your role.  Maybe you make the policy.  Maybe you enforce it.  Maybe you grudgingly go along with playing it out, but you play it out on us nonetheless.  Maybe you persuade us to give up ourhomes and move somewhere else.  So many things you could be doing, but it means you bear some responsibility for somethin terrible.  You can’t escape that.  I can’t sugar-coat it for you.

This is my home.

That’s all there is to it.

This is my home.  And anyone who participates in trying to take it away from me, is doing something terrible.

Because this is my home.  Living here is my right.  Having the assistance required to live here is my right.  Nobody gets to chaange that.  And anything that calls itself the Home and Community Based Services Waiver should never include services of a type that force or coerce anyone to move out of their own home.  They’re not home and community based if they force you to choose to leave your home and community for somewhere else, no matter where that somewhere else is located.  This is my home, you can’t just exchange it for another and pretend they’re the same.

Generations of self-advocates with developmental disabilities have fought for the right to live exactly where I am living now.  Lois Curtis fought for this.  Elaine Wilson fought for this.  They were two women with developmental and psychiatric disabilities, and don’t forget it.  They are what the Olmstead decision was all about.  Everyone has fought for this and I will not give it up lightly.  I will fight for it for me and for everyone who comes after me.  And it doesn’t matter if you don’t understand what it means to grow up thinking you’ll never live in your own home, but I did grow up that way and it nearly killed me.  I don’t want any child ever growing up again believing they’ll never have a chance at freedom and a home of their own if they have a disability. My apartment may not mean much to anyone else but it means the world to me and that’s the only thing that matters here.

This is my home.  You don’t get to tell me that’s not important, or that giving it up is inevitable or necessary.  I know better.  I know my rights.  THIS IS MY HOME.  And this is how much I have to lose.  And more.  I will fight to stay here with everything I have in me, and never stop fighting no matter what happens.  Because it’s not just my home at stake.  As long as any disabled person can be told their disability is too severe to live at home, none of us are truly free, because true freedom isn’t conditional.  THIS IS MY HOME.

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You’ll pry my apartment keys out of my cold dead fingers.





I wrote this post using Unity on my Accent 800 communication device.  

This is a reminder that not everyone on the Internet speaks to communiate and some of us use picture symbols to write.

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The screen of my Accent 800 communication device.  Above the words, I’ve pasted in the sequence of picture symbols it takes to get each word, so you can have some idea how it works.  You hit a set of symbols in sequence and it gives you the word you are looking for.

 

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Posted in Being human

I have to carry my home in my heart.

Light shining through the canopy of a redwood forest in San Mateo County.
Canopy of Redwood Terrace with sun shining through.

You are not my home.  You are not my community.  Please stop.  Just stop.  Stop telling me you are these things.  Stop demanding my allegiance without giving anything in return but a handful of broken cobwebs tied together with bullshit.

I’m never going to learn your language.  And you will always consider me morally inferior for this.  Why should I even try?

It was hard enough learning this language.  The one I’m speaking to you now.  The one that was forced on me before I knew there were choices in the world, before I knew what language even was or meant.

The one that requires not one but multiple layers of translation.  Translation from experience to ideas.  Translation from ideas to words.  Translation into an entire context where my experience does not exist and can’t exist.  Chopping everything into jagged pieces that don’t match where they came from and rearranging them into something unrecognizable.

This is exhausting.  This takes everything I have and a lifetime of learning.  I can’t do more.  Stop demanding more.

And you expect — expect so deeply that you don’t even ask it out loud — that I renounce everything important to me.  My culture, my language, my religion, my social ties, my moral compass, love, connectedness, personal privacy, compassion, integrity, self-respect, depth, wholeness.  All of these things, and things that don’t even have names, you want me to leave behind.  In exchange for what?  You haven’t shown me a damn thing worth all that.

And you treat all of those things as if they never existed, as if they couldn’t have existed, not where I’m from.  And as if they are worthless, useless, baseless.  Even though they have roots deeper than you can see.

And in your world, there’s an invasion of personal privacy at or even before the beginning of every single conversation or social interaction.  You want me to divulge detailed, sensitive information that has been used to hurt me.  Every time I talk to you.  Every time.  And if I don’t, that will be used to hurt me.

If by some miracle that doesn’t take place, then the invasion will come later.  It will come when I say something totally innocent, and you give a response that demands an explanation.  Either you actually make the demand out loud.  Or you make assumptions that require I either accept being harmed, or give explanations that will also harm me.  I’ve heard this kind of thing called a double bind.  Whatever it is, I don’t like it.

This isn’t the only double bind.  Every interaction with any of you is a double bind.  That is, according to Google, “a situation in which a person is confronted with two irreconcilable demands or a choice between two undesirable courses of action.”  In my case, a choice between opening two cans of worms, in public, either of which you could use to break my heart and trample on my soul.

One of your most common double binds:  Take a knife and chop myself into pieces for you, or you’ll do it for me without my consent.

You promised home.  You promised community.  You promised belonging.  You promised justice.  You promised love.  You promised a lot of things.

You broke every promise. Every. Single. One.

I have to carry my home in my heart the way a turtle carries its home on its back.  I had no choice but to leave where I came from, but your world is worse than the one I left.  I understand you built it with the best intentions, but you know what they say about good intentions.

A friend once called me a perpetual outsider.  Certainly, among communities like yours, I am.

The world has a place for me though.  Even if you’ll never see it or acknowledge it, even if you try not to allow it.  An exact place, a precise place, a tiny place, a place at once private and connected to everything.   A place nobody can change or dislodge.  The redwoods showed me that.


This is not intended to apply to just one person or community, but to many connected experiences I’ve had over my lifetime.  And I’m far from the only person in the world who’s experienced this, or I probably wouldn’t post it.

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A tree with moss and fungus in Redwood Terrace photographed by my best friend.
Forest floor with redwood sorrel and the shadow of the photographer.
Forest floor in Redwood Terrace, with redwood sorrel.
Posted in redwoods

Visiting the Redwoods

 

Light shining through the canopy of a redwood forest in San Mateo County.
Light through the redwood canopy

The part of the redwoods we lived in when I was born are sacred to me. My best friend is trying to visit there. Too many feels.

Thank you world for dirt and trees and fungal mycelium an redwood sorrel and slugs and salamanders and the things beneath everything.

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Fungus growing on the sides of a tree

Don’t forget no matter what happens that the world is a place of terrifying beauty and depth and we owe a debt of gratitude for our existence.

These aren’t things anyone has good words for, even people with much better words than mine.  But we need to draw strength from what is good.

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Redwood trees

And we need to put back into the world as much good as we can, precisely where we are needed, wherever that is, however strange or small.

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Circular wooden building with ladder surrounded by plants

And this doesn’t go away, no matter what happens, no matter what is done, what snow, what is ahead.  This is both birthright and duty.

It’s important to find where we need to be.  And then be there.  Thoroughly be there.  Do there.  Whether it makes sense on the surface or not.

Sometimes we feel separated flailing in the dark.  But each do exactly what we need to do.  And underground our roots are deeply intertwined.

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Plants growing up a tree

Disconnection is an illusion.  Underneath our feet is more connection than most of us can imagine.

We are each in some way exactly what we need to be.  We do best when we find that and deepen it and act from that depth.

The world needs you.

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Forest floor with redwood sorrel, fern, and other plants

Our obligation to the world is unbreakable.  So is the impossible level of love underlying anything we look at.  These things are connected.

If you feel disconnected, look down.  And down.  And down.  And down.  You have roots in everything, whether you feel them or not.

Forest floor with redwood sorrel and the shadow of the photographer.
Forest floor with redwood sorrel and shadow of photographer’s head

These aren’t platitudes.  This is a reality as difficult as it is beautiful.  It’s also important.  Especially now.

And there s strength and depth in places you may have never been able to look. You don’t have to feel it for it to be there.  It’s there.

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View out over yellow grass and green redwood mountains turning blue in the distance

Quote from my friend, who took these pictures:  “In the forest, yes, look up at the cathedral canopy, but also look down.  Everywhere is alive.”  She’s right.  And it’s the life everywhere in redwood forests, my earliest home, that has taught me who I am, where I belong, and what being alive means.