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.
  • 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

    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

    for the child who should have been me

    for the child who should have been me

    oh my baby
    i will touch your soft throat
    it will not hurt this time
    i will stroke your insides

    there are no razors
    at the ends of my fingers
    i am soft, opisthorchiasis like you

    i will never choke you while you sleep
    i will try not to hurt you
    we can cry together.

    we cannot be one
    i should have been one
    we should have been together

    i’ll never be able to look into your eyes
    but i can hold you.

    she


    she

    in a cage she lies restless. slithers back and forth across dirty concrete, viagra order
    the brown dust streaking hips, caries
    knees, urticaria
    sternum. she is both dark and light, shifting incessantly to the rhythm of blood pumping, systolic, diastolic.
    ta-tum ta-tum ta-tum ta-tum

    the cage is made of yellowed bones of my ancestors, cracked and brittle. she strokes me, seizes me, rips me away from the world, her arms grasping through the slots. i fear her, fear her as nothing that has plagued me before. her stories are hard as buildings, ichor like piss; salty, bitter.

    from the hollowed marrow bars come ghosts, circling her patiently, caressing, soothing. their eyes glitter at me, twinkle with laughter at what only the dead find amusing. in the face of this my fear wears thin, my mind’s eye stares, confused. who is she imprisoned within me?

    “look,” she orders me. “look at the dead who surround you. look at their desperate anguish. listen to the crunch of bones under their feet. this is your endowment, your heavy inheritance.” i survey the ordered wreckage of perfect right angles and know this is the tragedy of which she speaks. i slam myself into them, gouging hollows in my flesh.

    i turn inside to her. she struggles to reach me, imprisoned within my mind, bearing the unwieldy legacy of the past. before me she shifts woman to man, child, serpent. her touch burns and comforts, making me huge she blows my tiny mind. my fate rests in her liberation, rests in the cradle of our union. my lover, my self, my knowing.

    1 2 3 4 5 6