late at night

i wait for that magic moment when
pain and my exhaustion meet,
and exhaustion triumphs.

when i feel the emptiness that surrounds me
the hole i’m in looms
the darkness brings questions and doubts
the weight of my history bears down on me

late at night
pain and i
create and destroy
and i, the fool,
chase sleep

3 STEPS TO ORGANIZING A FRAGRANCE FREE EVENT

by Basil

Want to make your event accessible to people with chemical and fragrance sensitivities? Here are three steps to making that happen.

STEP 1: ACCESSIBILITY MEASURES

Decide what accessibility measures you want to provide. Know that your choice will have an impact on all attendees. Be honest with yourself and your attendees. Choose the option you can commit to.

When deciding on accessibility measures, two things to consider are people and the environment.

You’ll be asking people to change their habits and products. What limitations do you put on smoking? What kinds of personal care products can you limit at the event? This process can be intimate. Be prepped to offer websites and articles as resources.

Environmental factors in an event space include air quality and building materials. Air quality refers to the amount of pollutants in the air. Do people smoke in the space? Was it used for events that used toxic supplies (painting, silk screening, etc)? Do those chemicals still linger?

Assessing building materials refers to accessibility regarding the structure of the event space. Has it been painted recently? Does it have new materials that are still outgassing?

Here are three options for event accessibility. They are meant as helpful choices that make it easier for you to implement.

OPTION A – MOST ACCESSIBLE
• No Smoking at or near the event space throughout the entire event
• Ask participants to not wear clothes that have been smoked in
• No colognes, perfumes or essential oils
• Ask participants to wear clothes that have not been exposed to perfumes, colognes or scented oils, laundry detergents or fabric softeners
• Ask participants to refrain from using scented body and haircare products before or during the event.
• Fragrance free seating or space set aside
• Air purifiers used to increase air quality
• Building checked for issues like paint and outgassing materials. Other event space chosen if current one has recent chemical use.
• Remove offending chemical materials from space (air fresheners, chemical cleaners)
• Clean with non-toxic cleaning products before event.

OPTION B – MODERATELY ACCESSIBLE
• No Smoking in the event space or within 25 feet of the event entrance
• No cologne or perfume wearing
• Fragrance free seating or space set aside
• Air purifiers used to increase air quality
• Building checked for issues like paint and outgassing materials. Other event space chosen if current one has recent chemical use.
• Remove offending chemical materials from space (air fresheners, chemical cleaners)

OPTION C – LOW ACCESSIBILITY
• No Smoking in the event space or within 25 feet of the event entrance
• No cologne or perfume wearing
• Air purifiers used to increase air quality
• Remove offending chemical materials from space (air fresheners, chemical cleaners)

STEP 2: LET ATTENDEES KNOW

Let your attendees know how accessible the event will be. Your online and offline publicity and marketing materials should communicate expectations to potential participants. Be specific about participant demands so people with fragrance and chemical sensitivities can trust that the organizers have put thought into accessibility.

Here are two sample write-ups.

OPTION A – MOST ACCESSIBLE
To provide a chemical and fragrance free event, we request that participants refrain from the following before or during the event: Smoking; Wearing colognes, perfumes or scented oils; and using chemical based laundry detergents or fabric softeners. We ask participants to wear something that has had limited exposure to the items above.

OPTION B – MODERATE TO LOW ACCESSIBILITY
Please refrain from wearing colognes, perfumes or other scented or chemical products to the event.

STEP 3: ENFORCEMENT PLAN

Create a plan for enforcing accessibility. Please don’t let this task fall on attendees who have chemical or fragrance sensitivities. If you are inviting people with sensitivities to your event, it is important to be assertive and enforce the plan to ensure their safety and health.

This plan should include an effort before and during the event.

Your pre-event effort will include an assessment of the space and the implementation of any changes to the space. Remember to remove chemical materials, add air purifiers and add clear instructions for smokers. If you have created special seating or sections, clearly label them.

Decide what to do if someone breaks the rules. What if someone shows up wearing strongly scented products? What if someone smokes in a non-smoking area? How will you address concerns if they arise? Will people be asked to leave? To change? To wash up?

Knowing your answers in advance will ensure a better response in the moment.

During the event, monitor the smoking areas and any special seating or sections to make sure the plan is still working. Assign an accessibility coordinator who can keep track of these things so it doesn’t get lost in the shuffle.

Enforcement is key to making this plan and your event as accessible as possible.

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.

my chronic illness bill of rights

I HAVE THE RIGHT…

  • to the full range of emotional responses to my experiences—from self-pity to gratitude and everything in between.
  • to seek out information and advice from any source i can find.
  • to follow or disregard any advice or recommendations i receive from strangers, friends and family, fellow sickos, books, or health practitioners.
  • to seek relief or a cure, or not, as i see fit.
  • to healthcare, including face-to-face visits with allopathic and alternative practitioners, prescriptions and supplements, assistive devices, fitness classes, and access to the information i need to make informed decisions about the potential risks and benefits of whatever i pursue.
  • to any accommodations i need in order to have the option of participation in the public life of my community and the larger society.
  • to define my level of availability to others based on how i feel and my assessment of my needs.
  • to make plans and commitments with the understanding that i may be too sick to follow through on them.
  • to address conflicts and disagreements in ways that honor the delicate relationship between stress and my well-being.
  • to not be compared, favorably or unfavorably, with others who share any or all of my diagnoses.
  • not to have to answer the question, “how are you?”
  • to be appreciated for the contributions i make to my communities, even just by my presence.
  • to be valued for who i am, not what i do.
  • if you are under the weather and the weather is pummeling you

    pain is symbolic of something.
    pain is a directional isthmus.
    there is a goal.
    any specialist can tell you that.
    you poor suffering, ignorant, pounding thing.

    don’t be embarrassed!
    you didn’t know!
    that belly stands for an arrow
    a monstrous, thrilling arrow.
    the inferno of your nerves are the bridge.

    pain is an unreasonable vibration.
    pain is a bad songwriter.
    pain dismantles syntax.
    pain chews bones and brains.

    don’t be embarrassed!
    if you go astray
    if you fear there is no end
    if your bridge is underwater
    and you can’t swim
    if your nerves whir noisily
    and you cannot hear the conductor.

    pain will persevere
    you will persevere

    “The pain is in the world. It’s out here; it’s going to get you, no matter who you are.”
    -Wynton Marsalis

    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!

    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.

    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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