adventures in medical debt

11/18/15

today I paid my dentist $200 and made an appointment. I still owe $150 but that’s way less than the $700 I started with. thanks to everyone who donated and participated in my auction.

I also have $700 in other unpaid medical debt.

—————————

my paypal address is [email protected] if you can contribute. I’m hoping to put another auction together soon. if you have an item or service to donate please visit http://www.billierain.com/donate-an-item

this is public and shareable, so please boost if you are so inclined. I am going to use this as my master post on my fundraising adventures.

THANKS!!!!

sick and disabled queers are offensive to facebook

several years ago, I started a group on facebook called sick and disabled queers. over the years it has grown to hundreds of members and has become a lifeline for many folks, contributed to the disability justice movement, developed terminology and language that centers disabled queers, and created a model for how to center people of color in an interracial setting.
apparently today my group was deleted without notice for violating facebook’s terms of service.

update: the group was reinstated but it’s still an example of facebook’s oppressive and arbitrary policies.

who are your people?

harridan

she sits in the crooked branches of a maple tree
surveying the wilderness that surrounds her ordinary body.
she imagines herself strong and fast like a horse
with soft ebony eyes and muscled flesh.

the darkened windows in town see nothing.
burned ashes of the dead after battle
their charred remains pungent in the air
low moans of the wounded enter her without apology.

she is witness to all.
trigger warning for description of ritual murder
.
.
.
.
.
.
.
who are your people?

i love making complications
unbalancing equations
like when you ask

who are your people?

who besides every living and
nonliving being
how to separate one from
the oneness of everything?

in a line up-
do i take the swarthy one
who looks most like me?

are my people my ancestors
my lovers from past lives
my scotch-irish great grandmother
who hovers impishly over my shoulder
with sage advice, about it
bad jokes, cackling laughter
and a swift kick in the pants should the occasion arise.

who are my people?

people are bodies
minds
spirits
emotions

people are energy
earth
soil
plastic
water
sunlight
paper bags
olive trees
the quality of light in winter.

who am i?
i am the Beloved
i am the sun
i am a styrofoam cup with sticky fuscia
sugar water congealed at the bottom
and clinging desperately to the side.

i am a work of art that forgets
my own magnificence.

i am hovering over a naked child
eyes dilated drugged strapped down
to a fate neither of us chose
the ritual knife in my small palm
glistens gold steel ruby
reflects nothing in the eyes of
the man i am

i stand over my daughter
teach her to hold the instrument
i pass down pain
red torches of rage light
my abdomen
bursts aflame

i am heat moving quicker than
words meet paper the sun
my creator
i am the sun
i am one.

who are my people?

in temples of egypt i learn
to make my body sacred
geometry
creating shapes in my palms
i catch god’s secrets

the sun her eye
radiates over rocky crevices
la luna reminds us of his heart
the earth her battered body
temple desecrated
we leave him battered and lonely
as the conditions of our own souls.

chests tighten cold fists
around the pain
the pain

stick brown bodies
corpses like corks in a dam
but damn that doesn’t stop
the bleeding.

slash the face of our
Beloved Creator
we find in the looking glass of
embodiment
it is our own that bleeds.

class, disability, and social darwinism

(i wrote this around 2005, visit this site when i was stuck in a cycle of poverty, homelessness and exclusion.)

i’ve been struggling with this article for months now. there are so many things that i need to say about ableism and i don’t even know where other people are at in thinking about this shit. like other forms of oppression, i struggle against social messages that it’s a personal problem and responsibility. and while i know that’s bullshit, somehow talking about my personal experiences, particularly within the “social services,” feels extremely uncomfortable. i don’t see much out there written by and about poverty-stricken disabled people, and we’re really going through a lot! i know that i’m one of the lucky ones, because i have a partner who supports us, even though we’re still poor, we have a place to live.

so much needs to be said about the topic of ableism. my intention is to be a voice contributing to what’s already out there. these are the thoughts that are most pressing to me right now. i hope they will challenge, validate and energize you.

disability is a social construct. i see it as two things. one is a legal idea that has to do with access- to work and livelihood, and to participation as a full member of society. that idea puts responsibility on the individual as opposed to the society they live in. the second aspect of disability is about normalcy. people with disabilities aren’t “normal.” it’s one or the other or both. a person with disabilities either has restricted access to what is supposed to be available to everyone in society, &/or we’re not normal.

does it need to be said that “normalcy” is socially constructed?

a problem in the struggle against ableism has to do with the definition of disability. even the term “able-bodied” obscures a comprehensive definition of disability. this term has become synonymous with “nondisabled,” when in fact they are not the same. the fact is that there are plenty of people who are disabled and able-bodied. they are not mutually exclusive. many people in disabled, nondisabled and mixed communities have a definition of disability that is limited to readily apparent (if you can see) physical disabilities. people who do not fit into this definition, regardless of the extent to which we may experience ableist oppression, must simultaneously struggle against a definition of disability that doesn’t include us. yet so many people with “non-apparent” disabilities struggle with the same issues as other disabled folks: money, access, medical care, isolation, and so on (and on and on).

i’ve been on welfare for about a year. first of all, i make $339 cash and $120 in foodstamps a month. i also have a medical coupon that covers allopathic medicine at the poor people clinics (cuz most providers don’t take them) but doesn’t cover anything “alternative” or mental health care. that’s the most allotted to a single person in washington state. you can’t even rent a room in seattle for the amount of money i get. it’s almost impossible. if you’re on welfare, you’re either lying about your resources, you’ve lucked into a situation with low rent and bills, you’re homeless, or you’re completely immersed in the social services and at their mercy for your basic needs. most people in seattle have to go through the shelter system for at least two years before getting into even semi-permanent housing. and you have to understand that this kind of housing is extremely restrictive in terms of curfews and house rules. those are basically the options for people on welfare/GAU.

i have to go through a recertification process every three months. almost every time i’ve gone through this process, my caseworker has basically tried to trick me into getting kicked off welfare, usually by giving me false or incomplete information about what was required of me in order to continue getting benefits. usually i get kicked off and have to fight to get back on. this is every three months. it puts me through an emotional roller coaster because i actually do need this money to live on. if i didn’t, there’s no way i would go through this humiliating, repetitive, disrespectful process over and over again. i have about one month where i can relax between reviews, the other two are occupied with completing my review or fighting to get my benefits back. if they fuck up, i have to suffer the consequences. there are never consequences for them. what am i gonna do, tell them i won’t be supporting their organization anymore? no, because i have no other choice. that’s fucken oppressive.

how about people just get to live? how about we have the right to a roof over our heads. how about we just get to? what if i could just eat? what if i didn’t have to fight to eat in an abundant world? if i didn’t need to be on welfare i wouldn’t be on it. cuz it’s a horrible system and they treat me like shit.

i’ve been trying to get social security for about six years, and it’s the same shit. it’s so tedious and boring! but if i give up, i’m faced with the choice of being completely financially dependent on my partner (who is also disabled but able to work), or trying to find ways to get money which aren’t legal or sanctioned by the system. and the fact is that i have a stress-related illness that would be a barrier in even doing illegal things for money. i would do almost anything rather than be on welfare. it’s worse than any work i’ve ever done. i’ve never been as mistreated or humiliated.

the oppression i experience is this slow poison. it is slowly eating me away. i want people to know what’s going on with me but it’s so tedious and so boring and so soul-deadening. i don’t know how to talk about it. i’m not trying to put people through what i’m going through because i don’t want people to have to go through this tedious bullshit, even vicariously. at the same time, i need people to understand what people on welfare, disabled people and people living in poverty are going through. it’s a mind-numbing, soul-deadening completely disrespectful process that’s not even interesting to talk about.

the only drama that happens is because the welfare office is so crazy-making “here’s your money. now i’m taking it away. no here it is. oh no you don’t!” that’s what it’s like. it’s a constant mind-fuck. everyone has a right to food, shelter, and healthcare. that’s the bottom line. but the mainstream attitude is if you can’t provide for yourself, there’s something wrong with you, and being on welfare is a form of punishment. social darwinism–survival of the fittest. if you’re crazy, retarded or crippled–you’re not fit. regardless of liberal rhetoric, most people don’t place much importance on if you live or die if you’re disabled.

a lot of people seem to need some dramatic story, and what happens to disabled people living in poverty, from what i’ve seen and experienced, is not exciting or dramatic until we hit the streets or die. it’s just an ongoing, humiliating process of trying to get our needs met through different institutions who basically don’t give a fuck about us, or worse, actually hate us. it’s very rare for me to have a positive experience with health care or social services. the message we get is that our lives just don’t matter. not only is our survival not considered important to society at large, but also even many people and organizations that purport to be against oppression act as if they can’t be bothered with us. we end up isolated and it’s not interesting. sitting around with nothing to do isn’t interesting. so how do i talk about that?

i don’t feel like i need to entertain people, but at the same time, how do i describe nothing in a way that conveys how oppressive the lack of opportunity is? how do i explain how oppressive the lack of accessibility everywhere is when the oppression is that you’re hanging out by yourself and you don’t have anything to do or anyone to talk to or hang out with or anyone that gives a fuck? i’m trying to figure out how i talk about my experiences in a way that’s not boring for the person reading it. cuz it’s boring. it’s shitty. it’s like a poison. the lack of access is like a poison, constantly being told “you don’t matter. you don’t matter.” i cannot participate not only in mainstream society but also in the radical communities in seattle. oftentimes oppression is institutionalized within so-called activist, anti-oppression groups or communities. only those who are particularly hardy or have some other level of privilege are able to get around it and participate in those communities.

for a lot of people and groups, accessibility is an addendum that’s tacked on if it’s convenient. if not, it doesn’t happen. first of all, many people envision accessibility in terms of ramps. or if they’re really evolved (there’s that social darwinism again!) it will include sign-language interpreters and fragrance-free. that last one has been tacked on recently, with the epidemic proportions of people who have developed chemical sensitivities in this toxic society. all of those things are important. ideally, they would be a given everywhere. and they’re not. at the same time, that’s not the definition of accessibility. that makes things more accessible to people who need those specific accommodations.

a lot of groups are actually structured in ways that don’t leave room for disabled people. i know that i would be a lot more likely to contact a group if they had a specific contact for accessibility questions. a lot of people think of doing this for events, but they don’t consider doing this for people considering getting involved in the decision-making body of the group. there’s an attitude that disabled people can’t do anything, and there’s also the pity/hate/fear continuum that disabled people must face in the nondisabled world. so disabled people are invited to public events, but not into the organizing bodies that are putting on these events.

many organizations and groups are run with little or no concern for accessibility. those concerns come up after the decisions have already been made. this is extremely problematic, and raises the question, ‘are these people truly concerned with accessibility or are they trying to appear politically correct?’ be cause if you try and make your events accessible but your meetings aren’t accessible, then basically you’re not interested in having disabled people be part of the decision making body of your group. you just don’t want anyone to think you’re deliberately trying to exclude us from your public events– which you set the agenda for and you organized without significantly reaching out to disabled people, groups and communities. and yes, it’s important to have events that are accessible, but many groups who put on events don’t have even a single concern for how they can invite and welcome disabled people into the decision making body of the group.

even the idea that a person has to attend meetings in person or at all to become part of the decision making process of a group is problematic. for example, a local seattle group has wheelchair accessible public events but their office is at the top of a flight of stairs with no elevator and no lift. people who can’t attend meetings are often expected to do grunt work if they want to be part of a group. but how hard would it be for a non-profit organization get a conference phone/TTY, for example, so people who cannot attend meetings can still participate? and for those who do have these capabilities, why not advertise them, or at least advertise the fact that you’re open to discussing accessibility needs with potential new members?

an ableist society pities/hates/fears sick people, amputees, blind or deaf people, crazy people, people who use assistive devices, people in chronic pain, cognitively disabled people and everyone else who doesn’t fit into it’s definition of normalcy or fitness. each separate disability has it’s own stigmatism, and the result of each and every one of them is isolation. many disabled folks live in poverty. this is not because we don’t have anything significant to contribute to our communities and the world. it is because of ableism, a socially constructed form of oppression that systematically isolates and penalizes people who are outside the socially constructed idea of physical, mental and emotional normalcy.

if we’re going to struggle against ableist oppression, we need to be responsible, both as individuals and communities, for challenging ableism as it manifests in society, our communities and ourselves.

post script
finances are an ongoing issue for me, particularly because i cannot generally conform to job requirements and am quite ill. since writing this article: i experienced an extended period of homelessness; relocated cross-country three times looking for MCS safe housing and consistent work for my partner; have gotten off welfare in favor of being dependent on a partner with a steady, well paying job (wooo!!!); and am starting to make strides towards having an income of my own, with a lot of help from my artistic and disabled friends and community members.

in addition, i was finally given a reason for my breathing problems and MCS (Multiple Chemical Sensitivities). i have lung tumors!! with that revelation came a diagnosis for the tumor condition i have had since 1995: benign metastasizing leiomyomatosis.

i have yet to be apprived for social security disability.

if you’re intersted in supporting my work, i invite you to visit my professional websites:

dual power productions
http://dualpowerproductions.com

fierce bodies
http://fiercebodies.com

"working class unite" graffiti

night thoughts in the morning

a lot of nights I spend hours treating symptoms that are keeping me from falling asleep.
I still don’t see my way through this, refractionist but I’m focusing on radical acceptance and being happy. it’s weird, order because I think I’m a lot happier than most people even though I’m in a pretty extreme health situation and may not survive. i feel bad for people with unhappy lives. I wish I could bring everyone where I am because I truly enjoy what life offers me.
I think this is the wisdom of the dying. which should scare me I guess. but I do think there is a chance I could live a long time. the coin is up in the air right now. 
tending to my symptoms, getting some cranberry juice.
xo billie

i am not a patriot


if this poem

if this poem was a magpie
it would steal your jewelry
and leave you laughing

and if it was a feather
it would glide gently across
your exquisite face

if this poem was made of gold
my love would melt it into
a luminescent puddle

and if this poem was made of fire
it would keep you warm
all your days and nights

and you would never lose your way
because it would be a beacon
drawing you into your god-self

if this poem was a rose
its fragrance would mesmerize you
and its thorns trace lovely pain trails

and it would never wither or die
and it would always give you
just the right balance of agony and delight

if this poem was my hands
it would happily caress you only when
and whenever you wanted it to

and it would wear leather gloves
whenever you wanted a spanking
and hold you when it was over

if this poem was a balm
it would reach inside you
and soothe your deepest wounds

if this poem was the sea
it would carry you on its back
to all the continents of your ancestors

and it would rock you at night
while you slept with the sea lions
and planned your next adventure

if this poem was a book
whenever you opened it
you would learn whatever you needed to know

if this poem was a chariot
you would always ride in style
and there would always be room for friends

if this poem was a shirt
it would hug you and shape you painlessly
into the boy in your mind’s eye

and if it was a hat
it would keep you warm in winter
and never go out of style

if this poem was my eyes
it would always gaze on you
in wonder and awe

and if this poem was my tears
you would drink them and be healed
of all the shame this world has forced on you

and you would bathe in the saline water
and be cleansed of everything wrong
anyone ever said about you

and you would never believe their lies again
and you would know only grace
so that just your splendor would remain

if this poem was my love
it would fill this city with longing
and no one would go to work

and everyone would wander the streets
searching for the answer
to satisfy their soul’s sweet call
[trigger warning for violence, unhealthy abuse, recipe
and negative feelings about the united states]

i think my first act of rebellion against the united states was when i was seven and in second grade, and i refused to stand for the pledge of allegiance. looking back, it’s clear to me why i had even personal reasons to resent being forced to declare my loyalty to that scrap of cloth and all it represents, but what kind of thoughts does a seven year old think that necessitate such a refusal?

i suppose i’m a leftist, although i spend very little time in pursuit of the kinds of activities commonly associated with leftist politics. out of necessity, i spend most of my time at home, and my activism, as such, consists mostly of this blog and my other online projects. i know a lot of activists who feel anger around july 4th, but somehow the enthusiastic flag-waving just makes me really sad. the united states makes me incredibly sad.

when i was seven, i was already experiencing on several levels the vicious underside of american life. at night, i was abused at home and forced to participate in experiments that involved the torture of people (mostly children) and animals, and was encouraged to feel like a good citizen because i was “helping my country.” and in my neighborhood, the police were a constant threat and reminder that poor and brown folks in this country are second-class citizens.

i don’t know what the heartless brutality of my daily life meant to me, how i interpreted those realities through the lens of a seven year old. i wasn’t aware of the long and sordid history and continuance of settler colonialism, genocide, slavery, oppression, and imperialism that shapes my perspective now. but i do know that the day i refused to stand for the pledge of allegiance marked a beginning of a practice of resistance that shaped my young life and continues to this day.

(something else occurred to me. i wrote this at a time when being arab and unpatriotic wasn’t an actual crime as it is now. that makes me feel a little bit of fear about publishing this. but as audre lorde still reminds me from beyond: “it is better to speak/ remembering/ we were never meant to survive.”)

MCS accessibility basics

when it comes to Multiple Chemical Sensitivities (MCS) accessibility, breast it really starts at home. there are several levels of making your person accessible, shop so i’ll give the broad strokes of each.

1. fragrance-free events or activities

it is very important when attending scent-free events to make sure you are not wearing anything that has come in contact with scents or cigarette smoke. some folks set an outfit aside to wear to accessible events. if you do use essential oils, definitely bathe with fragrance-free soap, shampoo etc and refrain from using them until after the event. also refrain from smoking after you have washed, until the event is over.

additionally, make sure your clothes are not dried with dryer sheets, as these are one of the worst chemical offenders. if you use public laundry facilities, it’s also a good idea to air out your clothes for several days before storing them or wearing them around chemically sensitive folks, as they tend to have residue from other people’s stinky laundry.

when i’m going anywhere where i know there is likely to be other chemically-sensitive folks, even if the space is not specifically designated as fragrance-free, i follow fragrance-free protocols.

2. being in community with the chemically sensitive

like some other folks with MCS, i do occasionally use scented products. they are particular to me and i try and restrict my use of them to my home or spaces where they will be completely drowned out by others’ scents (places where i generally need to use my gas mask). like everyone with MCS, my tolerance for scents is particular to me, and even to the brand or batch of the particular product or plant.

i have a small collection of essential oils. i use these medicinally, topically for aches and pains and i smell them for mental health concerns. i no longer wear them as perfumes, as i did before i became educated about MCS accessibility. i keep my oils in a metal box, and the metal box is in a cabinet.

when i meet other folks with chemical sensitivities, i will approach hanging out with them or going anywhere they might be as if i am attending a fragrance-free event and prepare as such. if we end up spending more time together, i usually like to do an audit where we go over the particulars of each others’ products and figure out what the other person is sensitive to.

there are people in my community who are educated about MCS and about my particular accessibility needs. i usually ask that folks who are serious about MCS accessibility consult with these allies if they have questions about anything. people in my various communities often send me emails about how to make their events MCS accessible. unfortunately i’m too sick to answer most of these emails. a lot more needs to be done to promote education about MCS accessibility in seattle (and generally), and unfortunately there is not enough popular education being done. YET!

i also try and make mental notes of anything folks with MCS say in passing about their particular sensitivities, as i know that not everyone is able to be assertive or completely thorough about their air quality needs.

which leads me to my final point about this: most folks with MCS are in a constant struggle to navigate our daily lives. if we are able to go out, we face a constant barrage of life-threatening chemical exposures. because MCS affects not only our bodies but our cognitive abilities and emotions, we often cannot express or identify that we are being made sick by one particular product someone is using. so if we do take the time to let you know that something you’re doing is making us sick, please respect that and don’t make us tell you twice, or g-d forbid, more than twice. it’s incredibly painful for us to find that people who purport to be our friends or allies, who express the desire to be near us, do not take our basic needs seriously and even cause us harm after we have expressed that there is a problem. if you are struggling with a solution, please let us know so we can help you resolve it, or if that’s not possible, so we can stay a safe distance from you until you get it resolved.

3. friendships and intimate relationships

if you want to hang out with someone who has MCS, that’s great! lots of us do not have many friends we can safely spend time with.

firstly, to reiterate:
when you meet other folks with chemical sensitivities, approach hanging out with them or going anywhere they might be as if you are attending a fragrance-free event and prepare as such. if you end up spending more time together, offer to do an audit where they go over the particulars of your products and let you know what they are sensitive to. it is best to send a list of products you use, so they &/or their allies can do research and identify known problems.

spending time with someone with MCS is not something to take on lightly. telling yourself that you’re fine because you think you are is not enough. many people with MCS will not tell you that you’re making us sick, either because we’re too sick or addled to communicate; or we’re overwhelmed because we thought we were going to be safe with you and we’re not; or we’re just too damn tired to talk about it and deal with the possible conflict; or we’ve been socialized or told that asking people to change their lifestyle for us is selfish, rude, demanding, unreasonable or wrong.

this is important. if you want to spend time with someone with MCS you must be willing to humble yourself to our needs, regardless of how that makes you feel. ask us for information and resources and use them. check in with us periodically and ask if anything has come up that we need to tell you about. don’t assume that everything is fine because we are not saying anything. we may be conserving our energy to survive the aftermath of whatever exposures we are getting.

if you feel overwhelmed with the changes you are being asked to make, seek support from folks who understand MCS accessibility &/or support you in pursuing these changes. if you need time to make changes, make sure you do not subject your sick friend to exposures while you are making the transition. believe me when i tell you that i prefer someone staying a distance away from me and telling me they are not fragrance-free/accessible to someone who gives me a hug cuz they’re trying to be fragrance-free and they figure i will tell them if the [blah blah blah] they are still wearing/using is a problem for me.

a last note

it is my belief that MCS accessibility, like all disability accessibility, is a social justice issue. if you decide to join us in the struggle for access, congratulations! you are part of a movement that is slowly gaining momentum and has the potential not only to save our lives but to protect the health and safety of all human beings and the planet. you are participating in a struggle that is part of the larger disability rights movement, and each aspect of this struggle is important and worthy. if you are living with other disabilities, i hope that you will also be fighting for your own access and we will be building bridges across our differences to increase our viability as a movement.

an open letter to rape culture

An open letter to rape culture.

You have silenced too many of us for too long! this is all out fucken WAR, eczema man, and you are gonna lose! I am tired of standing in shame, stooped over and eyes closed. I do not weaken in your everpresence, rape culture. I do not let your disease infect me with hatred and mistrust of other human beings.
You are not REAL, you are a product of society! When the powers of love crush oppression, abuse & alienation, you will be so fucken gone cause I will PERSONALLY see to it. You don’t mean shit to me. I refuse to support you or anyone that perpetuates your twisted existence. NOBODY, NOBODY benefits from you! You keep people apart when we are meant to be together. You destroy families, you kill children, YOU ALMOST KILLED ME!
but my spirit is strong, old powerful and wise. I outsmarted you, I now live my life in opposition to you, AND I AM NOT ALONE. God you’re so fucken history its un fucken believable.
You better smoke your last cigarette now, cuz your days are numbered.

listen to audio:
an open letter to rape culture

originally published in 1995

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!

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

1 2