10:47pm December 15, 2014

“

“THE BAGPIPE WHO DIDN’T SAY NO"

It was nine o'clock at midnight at a quarter after three
When a turtle met a bagpipe on the shoreside by the sea,
And the turtle said, “My dearie,
May I sit with you? I’m weary.”
And the bagpipe didn’t say no.
Said the turtle to the bagpipe, “I have walked this lonely shore,
I have talked to waves and pebbles–but I’ve never loved before.
Will you marry me today, dear?
Is it ‘No’ you’re going to say dear?”
But the bagpipe didn’t say no.

Said the turtle to his darling, “Please excuse me if I stare,
But you have the plaidest skin, dear,
And you have the strangest hair.
If I begged you pretty please, love,
Could I give you just one squeeze, love?”
And the bagpipe didn’t say no.

Said the turtle to the bagpipe, “Ah, you love me. Then confess!
Let me whisper in your dainty ear and hold you to my chest.”
And he cuddled her and teased her
And so lovingly he squeezed her.
And the bagpipe said, “Aaooga.”

Said the turtle to the bagpipe, “Did you honk or bray or neigh?
For 'Aaooga’ when your kissed is such a heartless thing to say.
Is it that I have offended?
Is it that our love is ended?”
And the bagpipe didn’t say no.

Said the turtle to the bagpipe, “Shall i leave you, darling wife?
Shall i waddle off to Woedom? Shall i crawl out of your life?
Shall I move, depart and go, dear–
Oh, I beg you tell me 'No’ dear!”
But the bagpipe didn’t say no. Clings

So the turtle crept off crying and he ne'er came back no more,
And he left the bagpipe lying on that smooth and sandy shore.
And some night when tide is low there,
Just walk up and say, “Hello, there,”
And politely ask the bagpipe if this story’s really so.
I assure you, darling children, the bagpipe won’t say “No.”

”

Shel Silverstein, “The Bagpipe Who Didn’t Say No”

I am that bagpipe. :-( More upcoming in a new post . Suffice to say, autistic passivity or trained compliance, which I have huge amounts of both, leave you ill equipped to fight off abuse before it starts.

Dave Hingsburger says most people have a personal space bubble extending several feet away from them. He also says that due to things like routine lack of privacy, toilet stalls without doors so staff can catch someone using too much toilet paper, mass showing facilities, DD people with institutions in our past have a bubble ghost starts at our skin.

Even those of us cared for in our often homes under our own direction develop the same problem. Every day someone, often a stranger with a VNA badge (says Dave, “to clients, stranger means staff I haven’t met yet”) washes my groin and rectum and surrounding areas, and applies antifungal and barrier creams too. If I have a vaginal yeast infection, they stick THAT inside me. Same with Fleet enemas, just different hole and more cramping after. Sometimes I’ve needed a cath, either Foley or a less invasive, short term cath. People draw blood and insert IVs info my protesting veins, which infiltrate within hours, prompting more needle sticks (for that love of everything holy, lef my Bard PowerPort be the end of that nightmare). I’ve had a feeding tube inserted with inadequate local anesthetic and sedation. I’ve had feeding fund inverted up my nose and form my throat.

The only private part of my body is my mind and feelings. Perhaps this is why I so fiercely guard against othera misinterpreting my thoughts. To tell me what my thoughts are is to invade my one reminding sanctuary.

Regardless. I have been shooting like never before at learning modesty. Modesty requires a large personal space bubble. A large personal space bubble means I fight or flee, or at least notice a threat, long before anyone comes close enough to touch me. I used to think modesty was a silly arbitrary social thing like not putting elbows inn the table. Turns out it’s my first line of defense against assault. Along with knowing how to say no. I’m getting there. But not without being assaulted, not Wight msn more close calls.

If you teach social skills to autistic people, teach no. Make sure you respect their no. And teach body modesty. When I was seven, I’d waddle with my pants on my ankles in outdoor pisces to “get ready” for the toilet. When I was fifteen I remember taking off all my shirts in the dayroom of a mental institution. At nineteen I went to the bathroom everywhere but the bathroom in my new apartment. In my twenties a close male friend had to inform me that simply turning my back whilst changing didn’t mean nobody else could see me, and that made me vulnerable. Watching Dave Hingsburger’s video The Ethics Of Touch (try to get it for your DD organization or something, it’s too expensive for most disabled people to afford) changed my life and my thinking about modesty for good.

I now tell staff to remind me if I’m doing something private in front of people, leaving the bathroom door open while taking a crap, that kind of thing. I need constant rehearsal because it didn’t come naturally. But I am going to go now and write about what it means to be the bagpipe who didn’t say no. Whether I finish tonight or not.

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