purple cardigan, pink tank, silver spoon and my boobs
Fear of being fat is pretty common in Western culture.  It's provoking eating disorders, excess dieting, dangerous medication, surgery, and abuse.  No one seems to want to jump on the fat bandwagon and hug a love handle for peace & justice.  Clothing industries are late to the party with cheap-yet-overpriced fabrics in tacky designs.  Stores have to be special, distant from mainstream outlets in order to sell plus-size wear.  Elephants are in the room and everyone turns to the other cheek, laughing after they've waddled off to tastier pastures.

Yet rarely do we hear about fearing disability.  Disability is viewed as an isolated condition, one that can be prevented with care or is tragically thrust upon the helpless newborn of our society.  Through medical ingenuity and sheer force of collective will, we can as a culture eradicate the diseased disabled from our midst.  Yes there's the Americans with Disabilities Act in the United States, but that doesn't stop us from refusing to hire 70% of blind folk and upwards of 60% of disabled folk as a whole.  We're a resilient culture, not to be deterred by law or reality!

So fearing disability as a result of fat should not be a new concept.  It's only natural that two of the things our culture deems the result of tragedy and possibly laziness/weakness would enjoy a cause & e/a/ffect relationship.  Certainly fatness will lead to diabetes which will lead to blindness and the amputation of major limbs.  That's a double-whammy right there; no sight and mobility impairment.  Certainly mobility impairments will lead to decreased access to exercise and an increase in bad-food intake which will lead to fatness.  It's a vicious cycle.  It goes round and round....and round and round...and sometimes it's so round it becomes a fat disabled circle.

Now it's only natural, some would say, that fearing disability would cause one to change their lifestyle or body dramatically.  Of course we fear disability; it's a death-sentence.  Not because being disabled is a bad thing necessarily, but because our society is created for the abled.  Disabled bodies are restricted, evicted even.  If one got a taste of that dehumanization of course they may very well buy into any notion of avoiding it in the future.

There should be a get-out-of-jail-free card for this one.  But there isn't.  Ableism isn't okay.  Fearing disability is fine if you're able-bodied.  But turn it on its head.  Look at my fat, disabled body.  What are you telling my body?  What are you telling your body should it ever loose its ableist rank and join the crip-parade?  As if loosing weight and eating carrots were the solution to every disabled road we could possibly travel on as humans. 

If that were true, damn would I have the sight of a bird and the most pompous father around.

I remember people spending hours or a day in wheelchairs in college to get the 'disability' experience so they could write a paper for their diversity classes.  I remember being appalled that they thought they knew what it was like.  I know that temporary-disability annoys me; it's temporary and the body involved tends to feel so put out by the circumstances the rest of us deal with every single day.  But it's only been a recent development for me to discover a temporarily-disabled-now-abled body that took that experience to mean run-away from the crips make drastic life changes for a potential disability threat that isn't really going to happen but who the hell knows...?

What happens to the already-fat, already-disabled among us?  What happened to fat-is-beautiful?  What happened to health at any size, not appearance of health at any size?
purple cardigan, pink tank, silver spoon and my boobs
Weekday commutes to work involve, when I'm on time, a ride on the same bus from my house to the local train stop and from that train to another bus which then delivers me to the front door of my place of employment. On the first bus I approach an older woman manages to rile every passenger in the front half of the bus so that there's an empty seat for me, then quarters off the area around my dog and instructs every moving passenger to not step on him, etc. Then she comments on him and my handling the whole 5 minutes to our train stop. Still in helper mode, she races me off the bus and to the door so that she can hold it open for me, ever the good doobie. Once I almost got hit in the face by her chivalry so I switched to a different entrance point. In an attempt to help, she ran through the building to try and beat me to that door too, again almost hitting me in the face with an open door. She's just trying to help.
She's ever actually tried talking to me.
This has been going on for months.
One day I got off the bus and stood aside to work on Drummer's harness. It felt loose and I was concerned. She stood over us and over to the right a little and watched for five minutes until I got ready to go inside. Then she tried opening the door. I took a different one.
Noting that subtleties are not this woman's specialty and that there was growing concern for my pretty face and sanity, I picked today to try and approach her with my words.

This is not an easy thing to do.

Sometimes I'm too abrupt, sometimes I'm downright cold. Sometimes  I make people cry. I've been working on this and have avoided the tear-jerking for a while, seeing as how I'm generally a nice person and don't want to cause harm and pain to people, just don't want to be harmed or pained myself. So after months of working on my reactions to people and my startle reflex and gaining the emotional competency to interpret real harm and danger from perceived, I gave it a whirl.

Not wanting to appear ungrateful I approached her with "so I've noticed you trying to do lots of nice things over the past few months..." and she interrupted with "yes, G-d has been so good to me and blessed me and I just want to help other people. I'm not like those others who don't do good things..." and stopped. I had to first shake the impulse to cough at G-d and blessing-related angst and instead started talking to her about how well yes, she's very nice but if she wants to be helpful she could maybe ask folk if they want help instead of just running ahead and opening doors or something. I said that often that endangers me because the door comes right at me and really I am capable of opening doors and stuff, that I don't want that help.  What she heard was something else I believe, because her response was "I'm glad you have such a nice outlook." No, that is not what I meant. So I continued by trying to address her commenting on me and policing my dog. I said that I was taking care of him and that her constant commenting and such made me feel bad, that I felt like I was being watched. I was trying to use language she herself was using - she mentioned feeling guilty because of my situation. Gah. I took that and said "yes but I feel guilty when people jump around trying to help me without asking me first - because I don't need that help." It ended with her not quite getting it but saying she'd ignore me from now on.

I'm mixed. While I'm glad that she's going to stop (hopefully, I'm dubious here) I'm sad that her take from it was "I'll ignore you then." That's not what I meant, I didn't want to tell her she was a bad person. I appreciate her situation, she's been raised to be uber polite and downright patronizing to PWDs but not out of mal intentions; she's honestly trying to be nice and good. But those intentions, however crystal are hurtful to me and possibly other independent PWDs traveling alongside her. In my attempt to stop behaviors that have both proven potentially harmful and are just not a fun way to start my day I may have helped someone miss the boat. And I didn't thank her for what she was trying to do. I didn't say it was very nice.

Ack. On the one hand it's not my job to make her feel good about herself. I was advocating for myself and did a polite job about it. On the other hand I don't want to leave her feeling bad about herself. Though privilege guilt is super common and in a brief interaction hard to avoid. I'm not really going to get her to move past the guilt she's been raised with by pointing out that what she's doing isn't helpful; I'm going to get her to see me as an ungrateful crip.

"Hold on," you say. "Stop right there - ungrateful crip? Even I know that's bullshit! That's not even partially acceptable! How dare you own that? How dare you care if someone sees you as that, it's ableist!" Yes, yes you're 100% accurate. It is ableist. But it's also not what I was going for. What I was going for was an interaction that left her feeling like yes, she's a do-gooder but maybe not everyone needs help. Instead I'm an ungrateful crip. So my mission failed.

Going forward, I ask myself what I can do differently, if at all, to explain things to people. Sometimes it's a matter of who they are I guess. She had a narrative she was going to stick with that told her what I was and what her role would be. But sometimes it is the message or messenger.

Next up: internalized guilt or why I ate my guide dog.
purple cardigan, pink tank, silver spoon and my boobs
My sister dropped a bomb on my head.  I'm laying in my darkened bedroom listening to my fingers type, trying to stay present and remember that I am safe.  That she is her and has to be responsible for her.  That we are the broken daughters of a torturous aristocracy built of poverty, ignorance, sadism and an over-abundance of trauma.  Our stories have been torn from our lips and we've been obligingly sewed up tight, creating existences post-haste to appease the story the Family likes to show the world.  Do they forget our legs and arms akimbo, necks bent back and lips smeared with their blood, our blood?  Do they forget our torn nightgowns and fires burning, the sound of howling men and bottles  breaking, do they forget the narration is leaking out of our fingers, our noses, past the blockade we've both built so furtively behind our eyes?

Surely we are not so meaningless as to erect sarcophaguses so soon, already waiting corpses we haven't the ability to give, already accepting that we're walking until we're dead.

We want so badly to behave, so badly to be loved, so badly to get rid of this endless shame.  If we were pretending or lying would you take down the shroud and let us up?  If we held you against our breasts again, spread legs a little wider now from years of use would you turn off the clips playing in our heads?  What will it take to make these memories go away as quickly as you've boxed them up?

You seem so content in your fabrication, yet we're still bleeding on smoking pyre, the smell of burning hair not escaping our nostrils flared and waiting.

Flared and waiting.  Flared and waiting. 
purple cardigan, pink tank, silver spoon and my boobs
Some Satisfied, others outraged with verdict for immigrant's death.
article here

It wasn't the smell necessarily, the cured meat steaming
or the beans melting on tongue twisted into
words fell onto pavement like jalapeno
my eyes watering, it was all I could do
first fists balled tight, then feet steel toed
pounding down upon you
until red, the color of my flag
flowing
covering
smearing
the stain of you on my arms glistening
until panting I reached down and squeezed -
your neck now like bread braiding
properly, I'm
reforming
reshaping
reconstituting
you walked easily, too comfortable
like gaucamole I preferred you smashed and covered
my mouth now smiling, my belly full
I've consumed and conquered
I've paid a small fee
to exit satiated
purple cardigan, pink tank, silver spoon and my boobs
Livejournal certain did make their code Open Source and Dreamwidth has definitely taken ample use of it.
We'll see how this goes.

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purple cardigan, pink tank, silver spoon and my boobs
etana

January 2010

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