Thinking aloud: scent-free spaces and access clash

[kaberett]

(Quick notes to self, more than anything else, because I'm clearly not going to get this done any other way. Self-injury discussion; breathing stuff.)

Scent-free spaces: access requirement for folk with multiple chemical sensitivity, but actively a problem for me because a lot of the ways I manage autism & depression involve scented products (I sometimes actually just... can't leave the house without them; wearing perfume means that if I'm heading for sensory overload I've an easy way out that doesn't involve stimming in ways that look like self-injury, which it's also good to avoid in public in the interests of avoiding triggering people).

I do take care that any perfume I'm wearing is close to my skin, and most people have to actually have their faces within about three inches of my skin in order to notice the scent at all. However I know that I'm sensitive to trace amounts of tobacco smoke most people don't even notice, so "most people don't notice my perfume" isn't actually a defence here; similarly, that I only wear scents I'm not allergic to doesn't help much.

Sophistry and sollipsism encourage me to argue that tobacco smoke is a carcinogen under all circumstances, and perfume ingredients are incredibly strictly regulated. That doesn't actually make any difference to whether I'm causing any given individual migraine/lung damage/etc, though, and if my argument about smoking is that it's all well and good for it to be a coping mechanism but you need to find a better damn coping mechanism in public, because if I self-injure I take great care not to bleed all over other people's shit, then I can't with any degree of consistency argue that it's okay for me to wear perfume outside my own house. (There is perhaps some mileage in the argument that my perfume usage is also much more localised than it is possible to make smoking, but again I don't think that's really good enough.)

Where I'm at currently: not even slightly avoiding scented products or wearing scent (except that our wash powder is as neutral as we could find and the deodorant I use is scent-free) in the general case; not going to scent-free spaces (largely because none of the spaces I go to anyway are declared scent-free...) [while wearing perfume, but I don't actually own any neutral shower gel]; if I'm aware that people I'm going to be spending time with might have problems then I flag up extremely explicitly that I do use perfume and ask to negotiate around whether I'll be safe provided I avoid particular compounds versus needing to not wear perfume at all.

I'm... getting very stuck on the part where it's pretty frequently the case that Specific Clothes + Specific Jewelry + Specific Scent is the only way I can get out of the house, and I work a lot less well if I don't have all three of them. Need to do more thinking. Hrrgh.

Comments

[syntaxofthings]

I get this: I have chemical sensitivities AND have recently found a deep enjoyment of scents (some perfume, candles, soap). I haven't been able to use my pretty scented candles for months because I've been extremely reactive. And it's hard to figure out how to take care of myself when many of my coping methods are unavailable.

The thing I get most angry at with scent-wearers is sometimes not the scent itself but how much they douse on themselves, so if you're making sure your perfume is close to the skin, it helps a LOT. And warning people you're meeting sounds like a good idea as well. Also scent-free wash powder. Because scented tends to be THE WORST.

[403]

Seconded. I used to love incense as a relaxation cue, but my asthma has gotten progressively more twitchy over the years and now I can't at all.

[sashajwolf]

I hear you; I have similar issues and am in a similar place with them right now, while not being entirely satisfied with that.

[kihou.livejournal.com]

I'm not sure how much it's worth, but I'm sensitive to most perfumes (in a "can't spend extended time in department stores" sort of way, but nothing immediate or severe), and I never had a reaction at all when spending time with you.

I think there are a bunch of these sorts of edge cases that have to be dealt with on a case-by-case basis; it's a bit like guide/support animals and animal allergies. It seems like you're doing a pretty reasonable job of being respectful without getting paralyzed.

[kaberett]

Yeah, I have difficulty walking through department stores too, but that just means (as I hinted) that I'm prone to falling into the fallacy that if it's not causing me problems it won't cause anyone problems. (I know for certain fact that this is untrue, because while lots of my hayfever triggers - lilies, in particular - are very common, I'm absolutely fine with roses but I spend non-trivial amounts of time hanging out with someone who gets migraines if exposed to rose scent, so I have to make sure I don't wear roses around her!)

[redbird]

I don't have an answer for you, but I remember a convention mailing a couple of years ago that both asked people to avoid unnecessary scents, and flagged up that some people use scent to manage their health issues. It was relatively easy for me, because I use unscented laundry detergent and deodorant anyhow; someone else I talked to said they would buy an unscented deodorant and use it for the weekend, but weren't prepared to rewash any clothes they might bring with them.

What seems relatively easy is for people who aren't using scent that way, which includes a lot of neurotypical perfume-wearers, to do without perfume if asked.

[batdina]

I'm not sure I have anything constructive to add to this, except to say that I was on the train yesterday, and the scent of laundry detergent from my seatmate sent me reaching for inhalers and carbon filter masks.

when people stay at our house, we wash all of their clothes before they get to bring their luggage into the living areas. PITA? yes, definitely. But then I get to breathe so ...

(I continue to think that my only recourse when I go outside the house is a mask; I was going to say I don't use scents for anything, but that's not entirely true (for meditation focus, occasionally) so I think I understand using scent to manage other body issues, etc. and I wouldn't want to be the person who made life hell for someone else either.)

:::hands:::

[kaberett]

yeah *hands* is pretty much where I'm at.

[davidgillon]

This isn't the only case where access and different disabilities inadvertently clash. I've yet to meet a wheelie or wobblie who doesn't loathe textured paving, but it's an essential access/safety issue for people with visual impairments. The ideal is to find a compromise that enables everyone to access the environment in question, because the architectural ideal of a universally accessible environment doesn't actually exist.

You're actually spending far more time thinking about this than the overwhelming mass of the population, and their scents will dominate the enviroment. There's probably no more than one or two people in a hundred, if that, give a thought to what the scents they're wearing do to people with sensitivity issues, and probably at least one person in that hundred positively bathing in something obnoxiously pervasive. So until society en masse changes its behaviour and goes scent-free I don't think your general use is anything to worry about - you have a right to go out of the house, with and wearing the things that enable you to do so, scent is no different to wheels in terms of access rights.

And where you're talking about going into a specific environment, where scent is a known issue, you've explicitly said you ask to negotiate a compromise, which is no less than both you and the person with sensitivity each deserve.

Your thoughts and behaviour here aren't a problem so much as a model for the rest of us!

[davidgillon]

And just realised I didn't specifically address the tobacco smoke issue. Smoking is, in general, an elected behaviour, admittedly with addictive elements, and not an access issue. Your use of scent is as an access tool, not an elective behaviour, so that's the essential difference in comparing the two. You wouldn't for a moment consider smoking and wheelchair use to be identical for access issues, but you're making that false comparison for scent use, possibily because for most people scent use is elective, not an access tool.

WRT self-injury vs scent, it's relatively easy to localise self-injury so other people aren't exposed, it isn't so easy with scent, but by restricting how much you wear to be a strictly close-in experience I think you're actually doing what your argument tries to say you aren't.

[kaberett]

So I know people who use smoking as, essentially, a form of stimming - it's got ritual and routine and comfort and therefore helps with anxiety (despite the whole "it's a stimulant" thing) - and I've heard from lots more, one way or another. Ergo in order to build an internally consistent model to determine what I consider ethical behaviour on my own part, I've got to take that into account even if they're not the majority of smokers (because I'm not the majority of perfume-users, but I don't give a shit why people are smoking tHEY NEED TO NOT DO IT AROUND ME).

[davidgillon]

Agreed that you have to take that use of smoking into account. But in that case it's again doing something as an access issue, and again the solution is the one you're already applying to scent use - negotiate a compromise that maximises access, while keeping everyone safe. You've been on both sides of the compromise, you know that most people are willing to work towards a compromise. And sometimes the compromise may have to be 'we can't be in the same room together', but that's a better compromise than 'Alex can't wear scent and therefore can't leave the house'. I'm not sure you're assigning your needs equivalent value in the balance equation - ethics demands balance for everyone involved (at least the 'least worst' outcome in game theory terms), after all, and 'Alex can't leave the house' is definitely worse than 'we can't be in the same room'.

[kaberett]

Ha. Fair. <3 Thank you!

[syntaxofthings]

I really love this.

[pipisafoat]

(this. you. words. such goodness and many thanks for saying them.)
(both in general because it bears saying and thinking about for all people and specifically "i am glad someone talked about this to kabs, who is one of my best friends and thus worth more to me.")

[davidgillon]

:)

[vass]

I've yet to meet a wheelie or wobblie who doesn't loathe textured paving, but it's an essential access/safety issue for people with visual impairments.

I've met one! She's a wheelie, and she has a whole performance piece (she's part of Quippings, a disability performance group here in Melbourne) about what a massive turn-on she finds textured paving.

[davidgillon]

There's always one ;)

Hmm, just what kind of a 'turn-on', he asks suspiciously? (Thinking vibration and frequencies...)

[vass]

She meant the vibration.

[azurelunatic]

As long as it's half-domes instead of full-domes, or otherwise predictable and not painful to walk on, I'm pretty good with textured paving. What trips me up is walking surfaces which are supposed to be perfectly flat which aren't, because unless I am studying the ground I may miss it.

[kaberett]

ALAS MOST OF MY PAIN THAT GETS SET OFF BY STUFF IS ABDOMINAL AND RESPONDS REALLY BADLY TO THAT KIND OF BUMPINESS

(public transport is another matter)

[elf]

Smoking is unhealthy for everyone, even for those who aren't bothered by it. Scents are health-problematic for a fairly small number of people--and for many of them, it's only some scents, or high amounts of scents, that cause problems. (I have friends with petroleum allergies; they can deal with any level of essential oils, but not most commercial perfumes.)

I have no easy answers for how to balance your needs with those who need not to be exposed to any scents, just some general soothing comments about how most scent-sensitive people are able to cope with others who are trying to manage their own comfort through scent, rather than trying to walk through a cloud of it. (Not all. But this is an issue where numbers matter--if it's a case of "you or Person X cannot comfortably attend the event," you can probably negotiate somehow. You just need to be able to identify Person X.)

(I'm using "comfortable" in the broad sense of "able to attend and enjoy at all.")

When it comes to smoking... Persons A, B and C are smokers and won't be comfortable if they can't smoke. You can't be healthy or comfortable if they can smoke. Nobody else in the group can be healthy if they can smoke, regardless of comfort levels. So for that, while you might have the most extreme reaction, it's not a you-vs-them issue.

"Most people don't notice my perfume" is relevant, mostly because it stands a good chance of being true, whereas "most people don't notice the cigarette smoke in my clothes" is often false--what it really means is "most people aren't bothered enough to complain about it."

What needs to happen: People hosting "scent-free" events need to be more conscientious about their language. They need to specify if it's "no clothes washed in scented detergents" or "no scented oils etc" or "just don't show up doused in Chanel No. Whatever." (And more of them should probably be labeled "scent-reduced: be mindful of your scents and try to minimize their impact on the people around you.") I'd say they need to take a stand on smoking, but I live in California; there's no tobacco smoking in most places anyway.

[kaberett]

... RIGHT, that's actually a really good point about the extent to which perfume or whatever is actually noticeable relative to tobacco smoke (because yeah, if I'm trying to demonstrate the perfume I'm wearing to people they have to put their face on my skin)

also "not healthy for anyone" is a good point about where neutral actually is, thank you.

[azurelunatic]

My "make sure my teammates are comfortable" kits tend to include nicotine gum. California, and there are ways to get nicotine in a way that doesn't get it into the people nearby, at least for the duration of a party or conference.

[jesse_the_k]

I'm sensitive to many perfumes, dusts, solvents, blah blah blah.

One characteristic that's important to include in access planning is "does more matter?"

When I'm surrounded by ppl with thick layers of personal scent & washing powder & fumes from petrol-pumping, then just a small increment of more scent can send me over.

But if attendees at an event are truly attempting scent freedom (which includes supplying adequate soap/shampoo to all in attendance), then folks like you, using scent to manage life-interaction, may not affect me at all. It's not a straight line.

I highly appreciate your ethics. To grossly generalize, one of the wonders of knowing autistics is how many think so carefully of ethical implications.

[kaberett]

huh, okay, interesting, that's not the way I'd've expected this one to go -- specifically, I'd been half-assuming that another tiny bit of noise in a sea of sound would be, to brutalise this metaphor further, a drop in the ocean; and the difference from no-scent-at-all to some would be a more damaging step-change. Good to know that isn't always the case; thank you.

[lilacsigil]

Just to say I have a very similar experience to jesse_the_k - strong scents, especially alcohol-based perfumes or tobacco - are migraine triggers for me. Except for the occasional overwhelming scent attack, though, it's generally an additive problem. One person with a close-to-body scent is very unlikely to be a problem unless I've already been exposed to much worse all day.

[rosefox]

For me it's not a question of cumulative scent because it's an allergic reaction, not an emotional/psychological reaction. So if I'm surrounded by people who've soaked themselves in eucalyptus oil, which I'm not allergic to, I won't have a reaction. But if I get too close to one person wearing a small amount of cologne that I am allergic to, I might react.

That said, if I'm already sensitized by one person who's wearing a lot of perfume, I will react more to other triggers.

I do try to mitigate my reactions as much as I can, both because it's polite and because I kind of have to in order to live in a scented world. The important thing is that I get to make the calculation of how much hassle I'm willing to go through to be around a perfume-using person. I have one friend who douses himself in cologne--he'll come visit my house, leave, my partner comes home two hours later, sniffs the air, and says, "Oh, was [name] here?" He tries to remember to leave it off before visiting me, but all his clothes are saturated with residual scent. But I still want to spend time with him, so I take a lot of Claritin when I know I'm going to see him. If he comes over to my place, I'll cover a chair before he sits in it and then wash the cover afterwards. I'll drink tea with honey to ease my sore throat. I wouldn't go through this for a lot of people, but for this friend I will. :) Similarly, if I'm going to a big social event that I really want to be at, I'll try to remember to medicate beforehand so that I'm more braced for inevitable scent exposure.

[lilacsigil]

Well, nice to know that your experiences are real and mine are all in my head. Thanks for the Internet diagnosis.

[kaberett]

For what it's worth, I interpreted rosefox as intending to talk about the issue of sensory overload as distinct from the issue of allergic/intolerant reaction. I didn't think they were aiming to invalidate your (obviously real!) experiences (or I'd have addressed the comment); I'd interpreted them as attempting to add to the conversation rather than contradict you. Now that you point it out I can absolutely see the alternative reading; I am going to let rosefox clarify (in response to me rather than in response to <user name="lilacsigil" unless they indicate otherwise, please) if they so desire and take it from there.

[rosefox]

I'm sorry, I didn't see this until I'd posted my comment. Should I move mine?

[kaberett]

No worries, we're all good - leave it where it is (and thank you for the input, which I am pondering and which I am finding helpful!)

[rosefox]

*blink* Beg pardon?

EDIT: OH, I see what you mean. I apologize! I did not at all intend by "emotional/psychological" to suggest that your migraines or migraine triggers lack a physiological basis; I had actually missed the bit about migraines. And regardless of whether your ailments are physiological or psychological obviously they are entirely real and worth considering.

[kaberett]

(Thank you, that was more or less what I assumed you meant! lilacsigil, please let me know if you'd like anything further.)

[lilacsigil]

Thanks for the update, and I'm glad you weren't being dismissive. I've been told often enough that my physical symptoms for everything from migraines to PCOS to cancer were psychological, so I'm probably over-sensitised to it! And my allergies (apart from the one lethal one) work pretty much the same way - they ramp up with exposure.

[kaberett]

Heh, yep, I've got endo and joint hypermobility and depression and PTSD and I'm autistic, so I know that particular snarl-and-bristle well and completely understand it.

And thank you lots for your input, because it really is very helpful to me to have more data on this!

[pipisafoat]

the only scent-free places I know of are neurological clinics actually. well, and some research labs, depending on what they're researching and what might interact with the research. but i don't tend to visit those.

I wish more places would designate scent-free or at least a scent-free zone, which I know doesn't *fix* but would *help* if there were a part of the emergency department where there was a closed door and only scent-free people could enter (except in case of dire medical emergency) because if I have even a hint of a migraine, regardless of what I'm doing in the ER, scents are a huuuuuuuuge problem for me. (mostly food smells though. also, the number of people you can find sitting in an ER eating food, it honestly baffles me.) but alas, these do not exist in any hospital I've visited.

and then there's always That One Employee who wears a lot of a very pervasive scent and says "well I can barely smell it!" and i'm like BUT MY BRAIN IS DYING, CAN YOU JUST SHOVE ME IN A ROOM AWAY FROM YOU TO WAIT FOR THE DOCTOR.

[403]

Re: Food in the ER: I have some experience with this one, and it's that if you're low priority on the triage list, you can end up waiting in the ER for a really, really long time. (Ideally, for anything that isn't immediately life threatening you eat before you go there. There are a bunch of people who don't realize that.) In my case, earlier this summer I kept getting bumped down the queue for X-rays of my leg fracture in favor of people who'd been in auto accidents. Which I'm cool with - anyone who shows up in a neck brace is totally entitled to that first spot in line. But it meant spending 6.5h hanging out in the ER, and being very grateful to my folks for bringing me things from the cafeteria.

[pipisafoat]

That makes sense. What doesn’t make sense is a group of 10+ people with takeout from somewhere that is not the closest or cheapest place relative to the hospital and is also not a place that caters to specific dietary needs that closer and cheaper places can do. So if I’m smelling 10+ confusingly expensive greasy-as-crap burgers while in the midst of a bad migraine (not life-threatening so yeah, I’m getting bumped down) and also I’m sitting under florescent lights and usually the migraine isn’t even the reason I’m there, just another fun thing my brain decided to throw at me. That’s just. It’s a lot of smells that don’t make sense. Did you go to this restaurant, get it to go, and come hang out in the ER to make me nauseous? (Probably not to make me nauseous, but seriously, why are there so many of you eating in the ER? In my experience, when accompanied by more than one person, it has been found easiest to just have one person at a time go out and get food while the other remains with me. and maybe it’s because they know of my scent sensitivities, but even if the one picks up food for both, they take turns eating it outside of the ER.) SERIOUSLY 10 PEOPLE, WHY DID YOU EVEN BRING THAT MANY PEOPLE TO THE ER WITH YOU. AND HOW. DID YOU RENT A BUS TO GO TO THE ER.

[naath]

Some people can only tolerate very specific foods, especially while in pain, I guess? Ten people is a lot of people to bring with one injured person, Maybe they were all a bit hurt (like they rented a bus and the bus crashed in a painful but not immediately life threatening way) or maybe they were travelling together and one of them was ill but they can't split up because they just have this one bus? That is a confusing thing they were doing though.

I try not to eat smelly or crunchy food in public places that aren't food-selling places, but I don't always manage that because sometimes I do just Need To Eat Right Now and this is what there was to eat.

[silveradept]

Your effective radius of influence re: scent is likely to be considerably smaller than a smoker. If I have to get close enough to you to interact physically with you before your scent may affect me, that's ample time for interaction and warning in case it becomes relevant. Whereas with a smoker, I may not be able to get within interacting distance before the smoke, smell, or other element impacts me negatively. So your affect of others versus functioning of self has a fairly small sphere of worry, comparatively speaking. And, with the exception of people who don't believe in personal space and boundaries, and workplaces that force people to be in very close proximity, it is much easier for you to be able to enforce distance requirements out of concern.

I think you're doing fine in managing risk to self and others.

[rydra_wong]

Okay to link in a perfume links round-up?

(This is a really important topic and thanks for writing about it.)

[kaberett]

Yes, by all means.