As someone who deals with some MCS, i can definitely relate, and yet i still struggle with some of it, and don't always get it right. i'm always working on it though, and committed to doing progressively better, learning more, and not fucking over my friends and community in the process. These tips from billie rain are really useful, and i hope you're able to get stuff out of them that help you progress too. <3
Multiple Chemical Sensitivities (MCS) accessibility basics
by Billie Rain on Saturday, March 12, 2011
when it comes to Multiple Chemical Sensitivities (MCS) accessibility, it really starts at home. there are several levels of making your person accessible, 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 continuous 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 someone 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 are fighting for your own access and we will be building bridges across our differences to increase our viability as a movement.
please feel free to repost this anywhere. thanks!!
Here are some other resources:
Tips for visiting a person with Chemical Sensitivity
Myths and Facts about MCS
How to Be Fragrance Free
And here's another post, about organizing a fragrance free event.