disabled brains?

“Werner has patients who were born with disabled brains from which he has removed as much as a whole hemisphere.”

disabled brains?

this sentence came from an article in shambhala sun about—what else?—a brain surgeon. there is no explanation or justification of the concept of disabled brains and why they need to be operated on.

i’ve had my brain checked numerous times for anomalies that might explain my various cognitive impairments and recurring seizures. so far no concrete evidence has been uncovered that proves my brain is disabled, men’s health
nevermind which part. modern western medicine has not connected me to the technology that would finally provide a physical map of my status as abnormal and less-than-whole. in brain or body.

a disabled brain? i love this concept! it’s so absurd that it throws light on the arbitrariness of the social construction of disability. this guy is removing the “disabled” parts of our brains! removing them!? truly, decease
i have barely an idea, even after reading the article, where this surgeon is coming from or what exactly he does. that’s not the point, really. the point is how casually the author addresses the concept of disability, of surgically altering a part of someone for no other reason than that “it’s disabled.” as if it was a given.

it reminds me of the way my disabled friends and i joke about social attitudes towards disability and disabled folks, i.e.
“get it away from me!” or
“disabled people make me sick!”
(by the way, one does not have to say it literally to convey the sentiment.)

eeeewwww!! it’s a disabled brain! fix it! fix it!

it reminds me of how much unsolicited advice i get on how to “cure” my chronic illness. as if the Advisors couldn’t just let me be sick. they have to do SOMETHING to help alleviate my suffering. or at least let me know that my illness is
all in my head
or
all my fault
or
a very simple problem to solve.

this advice is rarely prefaced with the kinds of questions or statements that indicate an awareness of and respect for my autonomy, my needs, or my ability to decide for myselfs if i want or need their help.

some examples:
do you feel like talking about your illness?
how do you experience your chronic illness?
i don’t know if you’re looking for resources, but i know this doctor, supplement, healing modality, diet, cool trick that i’d be happy to tell you about if you’re interested.
where are you at with your chronic illness?
i have some time, energy, money, or skills to offer if you want or need them.
is there anything i can do to help you feel more comfortable right now?

i wonder if it occurs to most nondisabled folks that i may just be living my life without focusing most of my very limited energy on trying to “fix” what’s “wrong” with me. sure, pain hurts. that’s what it does. but i’ve only had a handful of pain-free days in the past seven years, despite my best, worst, and mediocre efforts to feel better. i considered ending my life over it early on in my illness, but i decided i can live with chronic pain. i made my choice and i live with it. the least people around me can do is accept my pain.

i’m definitely not saying folks with disabilities shouldn’t have surgery or seek out health care. more that the assumption that every disability is a problem that needs to be fixed is a cultural attitude and, furthermore, it is incorrect. and my disabled brain thinks so, too!

to be a heart

to be a heart

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mixed-race manifest

I WILL honor my ancestors, refractionist
all of them
I WILL NOT use my ethnicity as a bargaining chip
I WILL define myself according to my own realities
I WILL NOT be defined by how others perceive my phenotype
I WILL seek community with other mixed-race folks
I WILL NOT be forced, or attempt to force others, into rigid racial categories
I WILL learn about my family history
I WILL NOT use that history to justify my existence
I WILL change my identities as i learn and grow
I WILL NOT apologize for differences or perceived inconsistencies
I WILL be responsible for my privilege
I WILL NOT force myself into a monoracial box
I WILL own the complexities of my histories
I WILL NOT soften or tone down my realities for others’ comfort
I WILL keep talking
I WILL NOT be silent

preview to weekend two

it’s friday afternoon and tomorrow i pick up the director’s gauntlet and jump back into the fray. i’ve never directed a narrative film before so this is all strange and new to me. last weekend went well, view overall, malady although it was a HUGE challenge for me. i spent most of the week physically recuperating, and then screwed myselfs by going to value village yesterday.

i know, what was i thinking? what person goes to a value village, a value village of all places, when they have to direct a film in two days?

certainly not someone with chemical sensitivities.

i knew there was something wrong when i entered the store, but did that stop me, oh noooo, i just HAD to pick up a sheet for the show this weekend, and a few dresses while i was at it. shame! shame on me! ok yes this is sarcasm, kinda, but i did know there was something wrong with the air quality and i went inside anyways. once i was inside my brain got addled from the chemicals and it didn’t occur to me that i had to get out of there for quite some time.

it’s a tricky thing, directing a film while juggling several disabilities. especially since my symptoms are easily triggered by outside influences like chemicals and stress. but it’s a film, which means when you’re in production everyone has to be there at the same time working in the same direction. which is why i spent most of the week in bed. not only because i was too sick to get up, but because i knew that if i didn’t take really good care, i might not make it to the next weekend’s shoot.

last weekend i wondered if the folks on set thought i was being silly all the times i just collapsed on the floor. i am pretty silly, and i do weird things all the time. and really, it’s not exactly the end of the world. needing to lay down, immediately, is par for the course at any given moment for me.

well, if you’re reading this, pray that my chemical exposure doesn’t stop me from doing my job.

also, chemically sensitive seattle-ites, stay away from the value village in capitol hill.

book meme

1. What author do you own the most books by?
Thich Nhat Hahn, website bell hooks and Tamora Pierce

2. What book do you own the most copies of?
i’ve owned many copies of The Fifth Sacred Thing and Love in Action

3. Did it bother you that both those questions ended with prepositions?
huh?

4. What fictional character are you secretly in love with?
Esperanza Leticia “Hopey” Glass

5. What book have you read the most times in your life (excluding picture books read to children)?
The Fifth Sacred Thing

6. What was your favorite book when you were ten years old?
probably The Stand by Stephen King

7. What is the worst book you’ve read in the past year?
the novel i just couldn’t finish was The Good Fairies of New York. that’s all i’m gonna say, overweight cuz i hate to be a negative nancy. i’m more of a fancy nancy.

8. What is the best book you’ve read in the past year?
Notice by Heather Lewis

9. If you could force everyone to read one book, about it what would it be?
American Dreams by Sapphire

10. Who deserves to win the next Nobel Prize for Literature?
no clue. like, none.

11. What book would you most like to see made into a movie?
The Fifth Sacred Thing, and I’m definitely working on it.

12. What book would you least like to see made into a movie?
Notice by Heather Lewis

13. Describe your weirdest dream involving a writer, book, or literary character.
i’ve had many, many dreams in which Thich Nhat Hahn appears as a guide. probably the weirdest one was when we were in the ocean surrounded by whales and dolphins.

14. What is the most lowbrow book you’ve read as an adult?
i kind of hate the highbrow lowbrow thing. isn’t this really about class and some concept of intellectual superiority?

15. What is the most difficult book you’ve ever read?
The Bible

16. What is the most obscure Shakespeare play you’ve seen?
like, in person? uh, no. not a shakespeare fan. i’d rather see something by and about people of color, frankly.

17. Do you prefer the French or the Russians?
in bed? hmmm…. i’m going to have to say russians because there is some mythology about basil being descended from the disgraced brother of a tzar.

18. Roth or Updike?
barf

19. David Sedaris or Dave Eggers?
never read either. how about Gayl Jones.

20. Shakespeare, Milton, or Chaucer?
Rimbaud

21. Austen or Eliot?
Nawal El Saadawi

22. What is the biggest or most embarrassing gap in your reading?
i have no shame.

23. What is your favorite novel?
The Fifth Sacred Thing

24. Play?
nope

25. Poem?
“Litany For Survival” by Audre Lorde

26. Essay?
“Love as the Practice of Freedom” from Outlaw Culture. This essay was just so seminal.

27. Short story?
“Fisherman” by Nalo Hopkinson

28. Work of nonfiction?
Sister Outsider

29. Who is your favorite writer?
Sapphire. i wish she would write more books of poetry. also Beth Goobie.

30. Who is the most overrated writer alive today?
i am a fancy nancy not a negative nancy!

31. What is your desert island book?
The City in Which I Love You by Li-Young Lee

32. And… what are you reading right now?
To Be An Anchor in the Storm: A Guide for Families and Friends of Abused Women

some thoughts about communication

hello!

i’ve been following the discussions on the disabled feminists website lately, visit this site and there is all this weird controversy with them because they “dared” to call someone out for exploiting people with disabilities by pretending to be conjoined twins with a history of child pornography. it’s hard for me to imagine what the fuss is about, adiposity this project is obviously majorly problematic! all i have to do is describe the project and everyone around me collapses and starts moaning.

my world is so insular, i find few people that are willing and able to accept me as i am and not project some idealized idea of what a human being “should be” that i’ll never measure up to. my thinking is that i don’t want anyone around me that doesn’t respect who i am in the world. so i have a small circle that is filled with love.

but these political bloggers, you know, they engage with the “public,” and try to create community spaces to talk about issues relevant to their communities and promote social justice and stuff. which is cool. really cool, actually.

the thing for me, i feel hesitant to engage in these public forums because i’m not sure even in these spaces there is the flexibility and willingness required to really be accessible to folks with various communication styles and needs. i just finished a great disability studies course at UW, and my first class i was thinking “i’m going to be the fucked-up person in the corner again.” and that totally didn’t happen, mostly because the teachers and participants were really interested in making room for various perspectives and communication styles. so i know it can work.

really, the fact is, i’m a fierce dirtbag [drag] queen who says what the fuck i’m thinking and i don’t have much concern for the rules of politeness. i do believe in compassion, kindness, respect and honesty. i just express them in my own big fierce way. in politically progressive circles outside my close circle of friends, i often feel like the proverbial bull in the china shop.

and all this finally motivated me to start my blog and site fa real, so thanks activist sites for giving me things to think about that made me want to start speaking for myselfs in my own way on my own site.

let this be the beginning of a beautiful relationship. now i must get back to rupaul’s drag race.

love,
billie xo

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