Thursday, 5 May 2011

Blogging Against Disablism: Why I'm tired, why I'm sick, why I feel embraced

When I first read about Blogging Against Disablism/Ablism Day, I knew I wanted to write something for it.

I finally had some time to sit down and write this week, and I spent a little while sitting quietly, not thinking about much, not writing, just being.

Letting my mind go out of focus, then bringing it back to my experience… what really comes to the forefront is
just how tired I am.

Physically tired, because I’ve been wrestling with a flare-up of chronic illness for four days of the last seven, and it’s been exhausting.

But also emotionally and psychologically tired, because I’ve been spending way too much time lately wrestling with other people’s blocks around my disability and accessibility issues.

I’m also emotionally and psychologically tired because a lot of this current flare-up is due to fragrance exposure from other people -- other people whom I’ve already educated, talked to, and asked, over and over, not to use fragrances around me or in my house.

I’m tired of educating people. I’m tired of advocating for myself and for other people with the same issue. I’m tired of explaining over and over. I’m tired of trying to convince people that I’m not making this shit up. I’m tired of asking the same people over and over for the same things that I need in order to make a physical place or an event accessible to me -- as well as to the many other people I know with fragrance and chemical sensitivities. (In my former Coven / women’s spirituality circle alone, three-quarters of the core membership had chronic illnesses exacerbated by exposure to chemicals, including those in fragrances.) I’m tired of asking people not to wear or bring things into my home that make me ill -- including other people with chronic illnesses exacerbated by the chemicals in fragrances, people who bloody well ought to know better.

I’m tired. I’d like to curl up and sleep for a week.

And I’m angry.

I’m angry that people don’t take this kind of accessibility as seriously they take as mobility accessibility. Or allergy accessibility, as with peanuts.

I’m angry that when I talk to the office manager about the accessibility issues at the place where I go every week for counseling (including for support around living with a chronic illness…), when I’ve sent them a letter explaining the problem and some solutions and resources, I still have to explain the problem and solutions to the office manager over the phone. Twice. I’m angry that when I go into the office the next two times, the plug-in air fresheners aren’t there any more, but the air still reeks and there are still non-plug in air fresheners. I’m angry that the third next time I go, the plug-ins are back, that I have an instant migraine, have to take expensive, heavy-duty medications, can just function while I’m there, and have to get someone else to drive me home. (It turns out they only take the plug-ins out on the day I’m there, and if they remember.)

Accessibility FAIL.
(To borrow from ICanHasCheezburger.com.)

I’m angry that every time I go to outpatient physical therapy, I have to come home and change my clothes or I will get a headache and an upset stomach.

I’m angry that every time I spend more than five minutes in the best pharmacy in my suburban town, I have to come home and change my clothes or I become nauseated and headachy.

I’m angry that, even though the language on the invitations to the Sabbat / holiday celebrations in my tradition has included our fragrance-free policy for years, someone who’s been on our mailing list for years still wore perfume, cologne, or aftershave to Beltane on Saturday. I’m angry that another person, who also has a chronic condition made worse by fragrances and who has been part of this community from its inception, brought fragranced baby-care products and used them in my home at Beltane on Saturday, producing an instant headache and vertigo.

I’m tired of explaining to people that just because they’re fragrance-sensitive and a particular fragrance doesn’t bother them -- or they’re not fragrance-sensitive and a particular fragrance doesn’t bother the fragrance-sensitive person in their life -- that doesn’t mean that fragrance or product won’t make a different person sick. And I’m angry that I have to keep reminding the same people of that, over and over.

I’m tired of not being able to use the soap in almost every single public bathroom I use.

I’m angry at the wall of fragrance in almost every rest-stop bathroom on every major highway that I’ve used in the last few years. Even if I can use a a rest-stop bathroom, I have to change my clothes as soon as I get where I’m going, and wash them before I can wear them again (or segregate them in plastic if I’m traveling). And I can’t keep them in my bedroom or with my other clothes until I wash them, either.

I’m tired of people asking fragrance-sensitive people to “smell these markers and tell me which ones it’s okay for me to use during this meeting / workshop / event.” I’m angry when people ask this -- they are asking people to get sick.

I’m tired of coming home from supposedly fragrance-free spaces and having to wash my (previously-clean) clothes before I can wear them again without being ill for days.

I’m tired of people saying, “But it doesn’t smell bad…” or, “But I only wore a little…” or, “But I can barely smell it…” or, “But it’s all-natural…” when someone tells them the fragrance they’re wearing has created a problem, or when someone reminds them a group or location has a fragrance-free policy.

It doesn’t matter:
  • Whether something smells “pretty” or “bad”
  • Whether a fragrance-sensitive person likes the way something smells or not
  • Whether you wear a little of a fragrance or a lot -- it's the fact that you wear it at all
  • Whether you can smell it or not -- in fact, it doesn’t even matter if a sensitive person can smell it; it's the fact that it’s in the air
  • Whether it’s all-natural or synthetic, an essential oil or a perfume

These things have nothing to do with whether or not they can cause someone to become very sick, for an hour or for days.

I’m tired of people who think it’s perfectly acceptable to tell other people they can’t bring peanut products into a space, or come into a space if they’ve eaten peanuts recently, since it might make certain people ill, even though that’s an essential protein source for many people with blood glucose issues or might make people who unknowingly ate or brought peanut products uncomfortable -- but who say they can’t tell possibly other people they can’t come into a space wearing fragranced products, since it might make those people uncomfortable, even though those chemicals will definitely make certain people ill.

I’m tired of certain kinds of accessibility being considered more important or less important, more “real” or less “real,” than others. There is no hierarchy.

I’m willing to provide resources -- both to fragrance-sensitive people and to allies.

I’m tired of people asking me for resources, ignoring the resources I provide, and then insisting I tell them exactly what to do -- or insisting that I do it for them.
  • NO, I will NOT tell you exactly what products to buy. I WILL provide you with lists of fragrance-free products which have worked for me and which other people have suggested to me, and teach you how to read labels yourself, so that you are not at a loss when you can't find the exact product(s) I've mentioned.
  • NO, I will NOT buy fragrance-free products for the organization we’re both involved with or the event we’re both attending. I WILL tell you where I’ve found fragrance-free hand soap / dish liquid / etc. so YOU can buy it. I may be fragrance-sensitive, but it is not my job to be the person who always provides fragrance-free items. 

I’m tired of walking into supposedly fragrance-free events and spaces that aren’t.
  • Where the room was just vacuumed, and although they didn’t use the fragranced deodorizer this time, they usually do, so the vacuum and the room smell of it. (Instant illness.) 
  • Where someone couldn’t find fragrance-free dish soap at their usual or favorite store, and they didn’t have time or the inclination -- or it didn’t occur to them -- to go somewhere else, so their solution is to do all the potluck dishes themselves, so no one with a fragrance sensitivity with have to do any. Downside: now no one with a fragrance sensitivity can go into the kitchen (or through the kitchen to get elsewhere) once fragranced dish soap has been used, and no one who’s very sensitive can spend any time with the dishwashing person for the rest of the event. 
  • Where someone didn’t have time to go someplace that stocks fragrance-free hand soap or dish soap before an event, thought to ask me to get some, neglected to mention the location had two bathrooms, directed people to both bathrooms during the event, and didn’t put away the fragranced soap in the second bathroom. (Instant illness.) 
  • Where an organization decides to go fragrance-free, but neglects to mention it also decided to use up its bulk supplies of fragranced bathroom soap, dish soap, and cleaners first. 
  • Where there are supposedly no air fresheners… and there are.
  • Where someone smelled a product (hand soap, dish soap, lotion, etc.), and “it smelled fine” to them so they bought it for a fragrance-free event, but they didn’t read the label and so didn’t realize it had fragrance or masking fragrance in it… and then not only does someone get sick, but the person who bought it gets upset at the person/people who got sick
I’m tired of other people getting upset at me or other fragrance- or chemical-sensitive people when an event isn’t accessible to us, or when someone wears a fragranced product and we have to leave because we’re ill, or in order to avoid becoming ill.

I’m really, really tired of other people getting upset at me and us for wanting accessibility -- for wanting not to get sick, for wanting places and events to be as equally accessible to us as they are to people with peanut allergies and to people who use wheelchairs -- much less as accessible as they are for (temporarily) able-bodied people!

I’m tired of having to justify my accessibility needs. I’m tired of having to justify other people’s accessibility needs when I advocate for others as well as for myself.

Plain and simple, I’m tired of being discriminated against.

It’s exhausting.


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On the Positive Side:

On the positive side, there are people in my life who really do get it. And there are entire organizations I’m part of who really do get it institutionally, and events I attend where I just plain don’t have to worry about safety and accessibility: I pretty much know I will be fine.

Where I can relax into that trust.

What’s more, at those events, I know I won’t be the only person who says something if there is a problem. I know other people who are chemical- and fragrance-sensitive will speak up.

And better yet, I know -- from experience -- that accessibility allies will speak up, too.

I can relax into that sense of community.

(Like what happened at a retreat I went to in February.)

Some of those groups and events are (but are not limited to):

  • Friends for Lesbian, Gay, Bisexual, Transgender, and Queer Concerns
  • Friends General Conference Gathering
  • The Pacific Northwest Quaker Women’s Theology Conference
  • University Friends Meeting
  • Numerous folk dance groups around the US 
  • -- but most especially Seattle’s folk dance communities

Click here for more groups and events, and to add more that have successfully gone fragrance-free:
http://sites.google.com/site/stasasministry/resources/fragrance-free-resources/successful-groups-events

When FGC Gathering and FLGBTQC Mid-Winter Gathering went fragrance-free, it made both those events MUCH more accessible to me and to many other Friends with chronic illnesses that are exacerbated by chemicals and fragrances.  I noticed right away that I had fewer incidents and much less down time, especially at FGC Gathering, which is a strenuous enough event.  Kudos to both organizations for accessibility and leadership, and for making a difference. 

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Resources:

Fragrance-free resources: For information on why fragrance-free is important, on taking baby steps to making an event or a space more fragrance-free, work accommodations, specific products, and successful groups, click here: http://sites.google.com/site/stasasministry/resources/fragrance-free-resources

International Blogging Against Disablism Day: http://blobolobolob.blogspot.com/search/label/Blogging%20Against%20Disablism

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6 comments:

staśa said...

Thought after a conversation with someone about some of these issues:

If someone agrees to be the point person for making a space or an event accessible to people using wheelchairs, it's not acceptable to say, "Sorry, I ran out of time before I could find a place to rent us a ramp, so this won't be accessible to wheelchair-users after all."

If someone agrees to be the point person for making a space or an event accessible to people who have chemical / fragrance sensitivities, it's not acceptable to say, "Sorry, I ran out of time before I could find soap for the bathroom that's fragrance-free, so this won't be accessible to people with fragrance sensitivities after all."

Sparkly said...

I really, really like this piece. However, I take issue with the assumption that wheelchair users and people with life-threatening food allergies are always accommodated; wheelchair-accessible venues are limited, and sometimes, people don't even try. I've also seen people bring common, severe food allergens into spaces unchallenged. So I'd say it's a broader problem of ableism, not necessarily just with chemical sensitivities - although people are definitely ignorant about chemical sensitivities which makes things worse.

staśa said...

I completely agree with you that people who use wheelchairs or who have severe food allergies are not always accommodated -- in fact, folks with such disabilities aren't even often accommodated, in my experience. However, in many of the circles I travel in, those disabilities are taken more seriously -- even if we then fall down on implementation. Feh.

So, yes -- again, I agree with you: it's about a broader problem of ableism. Well-said.

Thanks for your comment, Sparkly!

nightengalesknd said...

This is powerful, thought provoking stuff. I got here by a link on the BADD page and discovered - I think I know you! - through BMC folks(I'm '98) and Del Val SCD, although it's been a few years. I keep moving.

My BADD post is here if you'd like to stop by. Nightengale of Samarkand was also my backsmoker handle.

staśa said...

Thanks for commenting!

I'm pretty sure we're friends on Athena's Web, and I've sent you an email that way. :) And yes, if you're whom I think you are, we have definitely met in real life (and danced together, too!).

Thanks for your article. It's very helpful for me.

Lynn said...

I came here via BADD (I am way behind with it, but each year I do still make a point of reading through all of them).

One blogger who I read sometimes (http://abnormaldiversity.blogspot.com) likes to argue that people with disabilities can sometimes end up serving the social function of a canary in the mine: Meaning, things that may be an absolute barrier to some people with certain disabilities (such as, fragrances for people with MCS, or a noisy chaotic environment for a person who is autistic, or a long flight of stairs for a wheelchair rider) may ALSO happen to be difficult to deal with for many other people. So learning how to accommodate people who are absolutely excluded by certain things (be it steps or fragrances or whatever) can end up helping a much wider continuum of people who maybe were upset all along but didn't raise as much complaint because they *could* just barely get by without the accommodation.

For example, fragrances are not an absolute barrier for me, I can still share space with, say, one of those plug in fragrance thingys if I absolutely had to. But it would still trigger my allergies giving me really bad nasal congestion, which in its furthest extremes can interfere with my ability to really accomplish much (if you have to stop what you're doing literally every minute or two to blow your nose yet again ... and again ... and again, it's hard to do anything else that requires the use of your hands or sustained concentration ... during one really awful allergy attack, I was supposed to carry clothes from a closet to the nearby bed, which should have taken maybe five minutes at most but 20 minutes later, once she realized I was having so much trouble, my Mom kicked me out of the house to protect my health because I was so occupied with blowing my nose continuously that I simply couldn't do the task) or breathe in a comfortable way (having had nasal congestion all my life from various allergies, I'm used to alternating between nasal breathing and mouth breathing when I have to, but if I cannot breathe through my nose *at all, whatsoever* for a prolonged period of time, it gets old quick)

The point being ... accommodations set up for people with more severe MCS reactions can also make the environment more friendly and comfortable for people like me whose reactions are considerably more mild than yours by comparison, but who still aren't that thrilled to be around excessive amounts of certain types of fragrance either.

For whatever it's worth, I did read somewhere that SOME people with MCS do seem to be able to handle oil-based fragrances much more easily than alcohol based fragrances. But it is still good for me to be aware that for SOME people, oil-based is still just as bad.

One issue that can complicate things is that SOME people NEED certain fragrances as an accessibility issue: for example, some people with migraines apparently find it helps to use a bit of lavendar or peppermint scent to prevent or alleviate migraines. If they can't use those scents, then that becomes an accessibility issue for them as well. I read somewhere (dang, I can't remember where now) where one conference space dealt with this by having certain rooms or something where scents used to control conditions such as migraine were allowed and other spaces where they weren't, so people who needed to wear scents for medical reasons had a place they could go without causing as much of a problem for people who needed to avoid them.

Sorry to ramble and use so many parenthetical comments along the way (apparently it's typical to do this when you have attention deficit disorder, or at least it is if you have ADD and also have strong verbal/writing skills ... finally, one of my quirks explained!) Hope this still made some sense!