why they left or came.
did they break like waves on the shores of
where did they land?
where did they come from?
you say it doesn’t matter.
pores are empty spaces on our flesh.
mine are filled with questions about
is it true you don’t remember
you say it doesn’t matter.
i’ve heard your scream in dark houses
with your eyes wide you run through
the hall. oil seeps from your pores and your
smell is sharp and dangerous. i think you’re
running away from the past. and i think
which direction were they facing as the boat
sailed west? that’s what i want to know.
what was left behind?
when you’re screaming in the night
i think it must be something big
sliding in the spaces of your pores and
i wonder if you even know what it is.
(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.
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 approved for social security disability.
You have silenced too many of us for too long! this is all out fucken WAR, internist 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.
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.
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.”)