Posted in Being human, cats, joy, Uncategorized

Friendship and Love and Resonance and CATS! A closer look at that picture.

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Anne, Mel, and Igor, all with the same expression somehow a bit and looking kinda cattish.

It’s good to see friends.

I remember what’s underneath the visit.

I remember pain and stuff.

I remember emergency speech.

I remember what’s underneath though.

And that’s what matters.

Underneath there’s me and Anne and everyone.

I love Anne.

I love Cal.

I love Joelle.

I love Ruti.

I love Laura.

I love lots of people I haven’t named.

I rarely get to talk to my friends. Even online. We rarely keep in touch. We all have huge trouble doing that. It’s the worst part of inertia.

I hate the myth that we don’t or shouldn’t need friends. It’s fine not to. But it’s totally okay to want and need people in your life and most people do, even most loners.

I hate the community norms in some places where it becomes almost a macho one-upmanship thing to show how unsocial you are. Like… I once described it as “A whole bunch of people socializing by competing about how much they claim to not need to socialize.”

It’s okay to want to socialize.

It’s okay to socialize.

Never let a label determine what you think you should want.

Not even a label you like or that is useful to you. If it starts ruling you instead of you using it something’s wrong.

Someone once told me “You’re allowed to want people in your life, you’re just not allowed to need them.”

I knew where she got that. And it was not from someone who said “allowed”. It was from someone describing their own experience only. But somehow other people turned it into “allowed”. And that’s bad.

Anyway.

It’s okay to want people in your life.

It’s okay to need people in your life.

Both of these things are equally okay.

It’s okay to like people.

It’s okay to love people.

It’s okay to socialize however you want to as long as everyone involved is really okay with it.

There’s a terrible kind of isolation very few people admit exists.

In systems like the developmental disability system sometimes all the people you ever see are staff.

For those unaware staff doesn’t mean what it seems to mean to most people. For DD people having staff means having people with lots of power over you, it’s the people who are supposed to be taking care of you. But they may or may not be. And whether they’re amazing or terrible and helping or hurting or whatever — they have power over you that you don’t have over them. Nobody can wish that away or make it go away just by wanting it to or trying. The power is built in to the job.

And sometimes every single person I interact with for months is staff.

I actually usually like staff.

But.

They’re not the same as friends.

Not the same as strangers either. It’s a personal relationship and pretending it’s not doesn’t work any more than pretending it’s a friendship works.

But it encloses you in the agency.

It wraps around you.

If all you see is staff.

All you see reflected back at you has an agency distortion.

Even if every single person individually sees you as a person.

This still happens.

It’s just not the same as having friends.

And.

I started having friends again.

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And.

I was a person again.

And.

I realized I wasn’t anywhere near a horrible a person as I thought I was.

Lots of other things too.

I realized my love meant something to other people and that other people loved me.

Both of those things are important.

So many things about myself and my friends and friendship and being human.

And I started to feel human.

A little bit.

I felt like I’d woken up from a weird sleep.

It’s how I feel around people who just want to be around me and I want to be around them.

That’s why Anne and Igor and everyone are so important. Even when we don’t see each other online or off for years. We want to but we can’t always and sometimes it hurts. But knowing each other at all counts for something. And I wish we could all communicate with as many others as we want to as much as we want to in the ways we want to. Because I’ve missed years of contact and I’m sure the others can say the same or more.

This picture isn’t just about pain, it’s why I wanted to post it again.

It’s about love.

It’s about being human.

I have a different kind of relationship with each of my friends.

With Anne it’s partly built on so much of our lives and brains working the same way.

If you ever read the book Loud Hands I have an untitled chapter. It’s about Anne. I can’t do us justice here but that’s the closest I’ve come to doing our friendship justice anywhere.

Anyway we read each other underneath everything. The words almost don’t matter. We exist and resonate.

And for that friendship that’s how it works.

So the picture is about resonating and friendship and love and humanity and all kinds of wonderful things.

And CATS.

Those are all in there too just as much as pain is.

I want to post that picture to celebrate knowing Anne and friendship and love in general and the amazing luck of finding those things at all, for a lot of us who never expected it or even really knew what a friend was. And the importance of all this when you have it.

And so many more things I can’t name.

There’s a lot in this picture that’s really beautiful about friendship if you know what you’re looking at.

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Anne and Mel and Igor in Mel’s apartment.

The pain isn’t separate from it either. It’s not some extra thing. If it’s part of my body right then it’s part of the picture too. But so is the love and the resonance and the catness and all the other things. They’re all wrapped in together because that’s how life works. It’s all there underneath if you know how to look for it.

I love all my friends whether I named you or not and you’re all important to me and I care about you and wish we could interact more in whatever way worked best for us.

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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.

 

Posted in Being human, crochet

My friend can feel her feet.

My friend can feel her feet, and really that’s all that matters.

She spent forty years pretending to be a man.  She has finally come out as a woman and begun transitioning to living in the world as a woman.  Nearly everyone who knows her has reacted similarly — “Oh that makes sense, why didn’t I ever think of that?”

But then there’s the other reactions.

My friend can feel her feet for the first time in her life.  She can feel her body.  She was so disconnected from her body before that she didn’t notice a surgical scar she’d had on her arm in plain sight her entire life.  And now she can feel her feet.

Whenever I automatically feel my feet, it means I’m connected with the world, it means something is going right, I am doing the right thing.  I feel my feet every time I play my grandfather’s violin.

So when she told me she could feel her feet, I knew she was doing the right thing.

Her eyes have changed too.  I didn’t used to really know she had eyes.  Now they are impossible to miss, with tons of emotional depth, range, and complexity.  Strangers compliment her on them.

But some people react to her in a way that makes me uncomfortable.

She’s just trying to live her life, feel her feet, do what she needs to do.

Other people seem bound and determined to explain their theories of gender to her.

They seem to think that her announcing she exists is an invitation to a debate.  (It’s not.  And neither is this post.  If you want to debate gender, do it somewhere else, I will not approve your comments, I will not have a post about respecting my friend turn into a place to disrespect her.)

This is incredibly disrespectful.  She is a human being trying to live her life.  She is trying to live a life where she can feel her feet, have beautiful expressive eyes nobody’s seen before, be happy in her own skin.

Her existence is not an invitation to a debate.

Her existence isn’t the start of a philosophical discussion about whatever you happen to think gender is and how you think it works.

Her existence is not an invitation to explain to her exactly why you think she is how she is.  And what you think is really going on with her.

It doesn’t frigging matter if you understand what’s going on with her or not.

It really doesn’t.

I don’t understand gender.  I understand less about gender than the average human being does.  Because I’m genderless.  Gender identity is a foreign concept to me.  I don’t appear to have one, whatever it is.

But not all the world works like I do.  And not all the world should have to.  And I don’t feel insecure enough about my ignorance that I have to cook up an explanation for everything I don’t understand, and throw it in the face of everybody who experiences something I don’t.

Sometimes you’re not gonna understand.

Sometimes you’re not gonna know why something is so important to someone.

But none of that matters, actually.

I don’t have to understand gender identity to understand that it’s incredibly important to the vast majority of people on the planet.  Including my friend.

I don’t have to know why it’s important.

All I have to know is that when my friend lives her life as a woman, she can feel her feet.  She can feel as if her body is finally a part of her.  She can feel happy and fulfilled and just go about her life without thinking about trying to look male all the time.  She can show the world how deep and expressive her eyes are when she’s not living in hiding and fear.

Those are the only things that are important.

My opinions on gender — if I even have them — mean fuck-all in the scheme of her life.

The ways my experience of gender differ from hers — not important in terms of how she is leading  her life.

I don’t need to insert myself right into the big middle of everything related to her.  In fact the best thing I can possibly do is get out of the way and let her be herself.

If she wants to talk about gender she’ll bring it up.

Her existence is not an invitation to that conversation any more than my existence with a feeding tube is an invitation to a debate on assisted suicide.

Just have some respect.

For my part, I found out that she’s never worn shawls before.  She wanted to try colorful clothing.  She wanted the option to wear things that were feminine.  She’s never had these options before.  (And no, not everything she does and wears is stereotypically feminine.  She just hasn’t had the chance before.)  She loves to wrap herself in blankets, so I told her a shawl is like a socially acceptable usually-triangular blanket you can take anywhere.

So I’m crocheting her shawls.

Every stitch says “I already know you are a woman.”  Just in case she needs a reminder with all the other messages she’s getting.

I’ve made her two so far.  One is purple mohair lace.  The other is a sturdy wool in many bright colors that seem to suit her.  Because that’s the other thing.  Her soul used to be grey and in hiding and kind of reserved.  Ever since she came out, her soul has been all the bright colors you could imagine.  I’m not the only one who has remarked on these changes.

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The first shawl I crocheted my friend, a lacy purple mohair shawl.

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Closeup of the lacy purple mohair crocheted shawl with a lighter purple border.

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Mel holding up the full length of a thick wool shawl in bright striped colors of purple, pink, blue, and green.

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Mel modeling the back of the thick wool crocheted shawl in many colors.

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Showing the simple but elegant stitch pattern of the crocheted thick wool shawl in many colors.

You don’t need to make someone shawls to show your respect for her womanhood though.

And you don’t need to understand anything about gender.

All you have to understand is that living as a woman she can feel her feet and everything else.

It really comes down to that.

Not you.  Not your opinions.  Not your ideas about gender politics.  Get out of her way.  This is about her, not you.

Just her.

Living her life.

Which is not an invitation to a debate.

She is who she is.  Grant her the courtesy of treating her like it.

That’s all you need to do, all you need to know.

My friend can feel her feet.

My friend can express great depth of emotion in her eyes for the first time in her life.

Her soul shines in all these beautiful colors that were hidden before.

But look:

My.  Friend.  Can.  Feel.  Her.  Feet.

End of story.  Nothing else matters.