Chatterday! Open Thread.

chatterday

This is our weekly Chatterday! open thread. Use this open thread to talk amongst yourselves: feel free to share a link, have a vent, or spread some joy.

What have you been reading or watching lately (remembering spoiler warnings)? What are you proud of this week? What’s made your teeth itch? What’s going on in your part of the world? Got any questions for your fellow FWD commenters?

Today’s chatterday is hosted by a puggle. Born at the Perth Zoo, this wee girl is one of the first to undergo a new genetic test to determine its sex, which will hopefully lead to more successful breeding programmes for the endangered varieties of echnidna.

teeny tiny long-nosed spiky puggle in a person's hand

A note to commenters: Please, as with other threads, keep the length of your comments down. A usual guideline, in the absence of extenuating circumstances, is to stick to around three pithy paragraphs or so, and to avoid making back-to-back comments.

38 thoughts on “Chatterday! Open Thread.”

  1. Aww. The puggle is adorable!

    I’ve got a job interview next week. A few days ago, one of my professors pointed at my cane and said, “If you show up at the interview with that, they’ll definitely hire you, because they’ll be afraid you’ll sue if they don’t.” I was not amused.

  2. Wow. Wow. I mean, I know that stuff happens, but every time someone reminds me I fall over. Wow.

  3. This is the same professor who, the first time he saw me walking with the cane, commented, “Well, you’re looking old.”

    Another month and a half until my dissertation defense, and then I don’t have to deal with him anymore! (He’s also incredibly unprofessional and irritating about other things, but most of them aren’t disability-related. Well, except for the fact that he’s pretty constantly several hours late for appointments, even though I’ve explained to him a ton of times that I plan my pain meds and sleep and TENS unit and other pain management things based on what my schedule is for the day, and if I prepare to be ready to begin a several-hour discussion of my research at 2, there’s a pretty good chance that I’ll only be able to last half an hour before the pain gets too bad if we start at 5 instead. And yet, pretty constantly, we’ll make an appointment for 2, and he’ll send me an email at 2:15 or 2:30 saying that something came up and he’ll meet with me at 5 instead. And I know that if I say no, that the next time he’ll be able to meet with me at all might not be for another two weeks.)

  4. You know what’s making my teeth itch this week?

    I’m 40, and I’m going through an early menopause. I’m OK with it, mostly. I never wanted kids anyway, so becoming infertile doesn’t bother me. My main symptom atm is hot flushes/night sweats, which can range from kinda annoying to somewhat debilitating (given that my sleep is already broken due to pain, so I don’t need something else disturbing it).

    But what’s annoying me is when I look for advice or support on this from other (older) women-friends, the reaction I invariably get is, ‘Oh, what you’re having can’t be menopause; you’re far too young.’ Complete denial of my experience – it’s as if they don’t know that menopause can happen outside the ‘average’ age range. As if it’s somehow reserved for them – and I’m a young interloper encroaching on their territory.

    I really don’t know why it annoys me so much, other than I’d have hoped women who’d been through it would be more supportive to their younger sisters.

  5. I finally finished my High School Assessments (HSAs) today! This pretty much signifies the end of the year for me, but I have until June 23rd all because of that massive snowstorm that hit the east coast in February. Happy Friday everyone!

  6. I’m not sure if this is appropriate here but how do get people to understand that when self-deprecating/self-mocking humor involves mocking actual disabilities isn’t acceptable? Any time I try I’m met with people saying that since it’s only directed at back at the person doing the self-mocking it’s not doing anyone any harm. Which of course makes me wonder where the line between acceptable self-mocking and ableist jokes actually is… I mean I know I’ve mocked myself every now and then when I misspeak or stutter something…

  7. That last sentence of my comment: “I mean I know I’ve mocked myself every now and then when I misspeak or stutter something”, should have ended with: “… but not in front of others.”

  8. Ruchama – ouch. I know it’s almost over, but is there a way to report him or review him? At the end of each semester, we have the SETEs, where we rate the course and the professor and most is 1-10 scale type thing, but there are 3 boxes for good things, bad things, anything else. Surely you have something similar?

    Dogged – I was on Lupron in the summer of 2006. (and a bit later, but I forget when I stopped) It puts you through chemical menopause. All I noticed were the hot flashes… and we spent 2 weeks at my aunt’s old leaky farm house in Nebraska. The only cool room was her room, but I couldn’t kick them out. I did sleep on the vent one night.

    It sucks that no one’s being helpful – online or off? You could try a different place online – maybe devoted to “weird” “female problems” where young menopause isn’t that odd. Or you could lie about your age. I wish I had some advice for you… sleep on an AC vent with a fan right on top of you. Wait, I do that now.

    Something that was interesting – in an episode of Little Mosque on the Prairie where Baber hurts his back. Prayer in general requires some movement (classic Christian, you’re on your knees) but “proper” Islamic prayer requires a lot of work. The imam tells him he doesn’t have to do it, he can sit in a chair. Baber refuses, because well, he’s stubborn. (His refusal was ageist – that’s where the old folks sit!) But it was educational for me, because I knew that you don’t have to visit Mecca if you physically cannot, and water/meds are allowed during fasts, and those who need food don’t have to fast, and it’s just nice is all.

    Something setting my teeth on edge – I’m voting straight D in November (midterm elections) even though our Democrats are more conservative than conservatives up north. Sigh. So the ads are all over, and most sound conservative.

    But one is bugging me, I hope he’s a republican so I don’t have to vote for him, Washington is “blind”, “20/20 vision”. Yuck. Okay, my impression may be colored by my dislike of state politics, but yeah, it just feels wrong. And now I’m wondering if other candidates use physical/ableist metaphors in their ads as well.

    The candidate running for Governor as a Republican “promises” to cut the 22 departments in TN government by a third, I think. It made me sick, especially after reading about the budget cuts in California. Tennessee can’t handle any more education cuts! We’re already broke – this country must be the only one that thinks we can save public institutions by lowering taxes everywhere.

    I started filing for SSI today – the phone call appointment. I was so nervous, because there are consequences if you lie and I don’t remember anything! And I was on the cell, so I couldn’t text mom to double check! And! And the internet conked out 5 minutes in to the call, just when I was checking the bank website to tell her the paltry amount I have. Not cool, universe, not cool.

    Do I have to give all the doctors I’ve seen since the problem started? Because I moved out of state for a month (supposed to be longer, but came back home) and then there’s the fact that is the 3rd chronic/major issue – they only need to focus on Dr Ego and refer to Primary Care… oh well, my file at PCM is thicker than a brick. It should be there.

  9. Kaitlyn, he’s my dissertation advisor. There aren’t really forms like that for them. I think that, after I get the doctorate, there’s some kind of exit interview with the head of the department, but I’m really not sure how much I want to say there, since I’ll still be relying on this professor for letters of recommendation and maybe for collaborating on papers for at least the next year or two.

  10. Related to 2 posts this week (dear imprudence and the playacting by Canadian politicians) – ads for an Alzheimer’s patch are bothering me.

    They’re from the perspective of the child of the person with Alzheimer’s. (though I remember an ad for another med that was from the spouse’s.)

    Why can’t they have the person WITH Alzheimer’s talking about what a difference Curitall has made?

  11. Ooh, I had forgotten about Chatterday coming up – and how convenient, because I have a question for you all.

    My university has a pre-orientation program that focuses on “leadership skills” – basically, they take a bunch of new frosh (two dozen? ish?) out to a rural retreat the week before the semester begins. A lot of it is just bonding with each other, but one thing that this particular pre-orientation program tries to do is talk about diversity; from what I’ve heard, they do a pretty good job with the usuals (gender, sexuality, race, socioeconomic status), but this year they reached out to the disability services office and said, hey, none of us are disabled and we just realized that we’re not really qualified to talk about disability, do you have a student who might be willing to come talk to our students, run a discussion, that sort of thing.

    They got hooked up with me; unfortunately, I can’t be present, although I’ll try to Skype in for a bit, and I’m going to help with planning. I was able to provide a number of topics for discussion about student life with a disability, but one thing they’re looking for is an activity. They do various physical activities around, e.g., privilege (“everyone line up … close your eyes, take a step forward/back if you have had access to X growing up … Y growing up … Z growing up … now open your eyes and see how spread out we are across the soccer field”) and are looking for something similar to do that could lead into a discussion of disability. I tried to steer them away from doing the usual “blindfold half the kids” type simulations, but the only suggestion I’ve come up with is acting out the Spoon Theory article. That would maybe be a tangible thing – yay props – but isn’t quite as participatory as we’d like, though I think we’ll go with it if we don’t come up with something better.

    Any suggestions on how to get people participating and talking about disability?

  12. Kaitlyn – Thanks for your support and suggestions. I was really talking about real-life friends, because they’re the ones who are around when I’m having hot flushes, stripping off, fanning myself and opening windows etc. I’ve had at least two of them say words to the effect of, ‘Oh, you silly little girl, that can’t possibly be happening to you!’

    My mum’s been quite helpful – she was early too – but she’s still given me the, ‘Well, I managed without HRT …’ speech.

    And LOL – I live in the UK. Aircon is virtually unheardof in domestic buildings, and I work in a 100-year-old building that doesn’t have it either. If I want air, I need to open a window (which does actually help – and I don’t seem to get hot flushes when I’m outdoors).

  14. Why can’t they have the person WITH Alzheimer’s talking about what a difference Curitall has made?

    Because they’re specifically marketing the availability of these drugs to the family members. The earlier someone gets on the drugs, the more effective they are, and the presumption is that people around the person with Alzheimer’s are going to recognize their symptoms before the person with the symptoms does, because of the cognitive and memory issues related with Alzheimer’s. (Often people can’t remember that they’ve not been remembering.)

  16. Boo, forgot to caption: link leads to a picture of an adorable puppy looking bored in some type of outdoor area.

  17. Good point, Amadi, I hadn’t thought of that.

    They could show the kid/spouse at the beginning and the person at the end.

    But you’re right, it makes sense that way.

    Dogged – no AC in the UK?! I was going to move there for the healthcare and public transportation, but if there’s no AC well… (of course, there’s also no sun there either :P)
    I’m hooked on AC and may have said I’d marry one a few times. When it’s so humid and hot and you step into that 70 F room, ahhhhhh, bliss.

    My mom and I went for a walk this morning around the neighborhood, chatting and whatnot. Not going back out, it was so humid and just inching towards hot when we went out. It didn’t hurt me, though she’s done something to herself and it hurt her! But we had to go to wal-mart because I need new shorts and now I’m on the couch with my heating pad on. Oh, it’s a lovely summer day. Bah! You can practically drink the air!

  18. ismith, concur on the wanting to get away from the disability simulation thing. All putting a blindfold on a sighted person does is show them what it’s like to live in the dark for half an hour. I kind of like the Spoon Theory idea, but it is copyrighted. Maybe modified to flash cards or something? Something like…

    Taking a Shower: You have a chronic pain/fatigue condition. Do you take a shower today? It will take you twice as long as a currently non-disabled person just because you don’t move as fast. Standing in one place for more than three minutes leaves you dizzy, nauseated, sweating, and in need of a good lie down. Be careful what products you use; your skin is sensitive this week and breaks out in hives at the least provocation. Combining products with different scents — you can’t afford to buy fragrance-free products; they are all, for some reason, more expensive and harder to find — will give you a headache from the way they clash. Know that washing your hair will leave your arms useless for the next four hours from having had to hold them over your head.

    So. Do you? It’s a lot of work. It’s going to leave you wrung out. On the other hand it’s been five or six days since you last bathed and even if other people’s opinions don’t matter to you your hair doesn’t feel very nice and you smell a bit ripe to yourself. (Other potentially relevant information could include: A lover of yours is calling this evening. You might be more restricted in what you can do with your lover if you do shower but you’ll smell nicer. Is the trade-off worth it? Does your lover know how much your condition interferes with activities like bathing?)

    Focus and Auditory Processing: You’re in class, trying desperately to pay attention to what the lecturer is saying. Your legs bounce of their own accord. Stopping them from bouncing takes effort — and reduces the attention you can pay to the lecturer. But people around you are glaring.

    Maybe they’re not glaring because your legs are bouncing. Maybe they’re glaring for something else. Look down at your hands: you’ve been clicking your pen or pencil for the past three minutes. You didn’t notice but the glaring people certainly did. Put your pen or pencil down, put your hands flat on the desk or table. Use some of your attention to keep from clicking your pen or pencil.

    A person a little ways away has a laptop. They aren’t taking notes right now; they’re playing Solitaire. If they play the nine of spades on the ten of diamonds that should open up a lot of room for them — oh neat they did! Now if they…

    The lecturer is calling your name. The lecturer has been calling your name for some time apparently and is irritated. “Um, yes?”

    “What you have in your hands is used for writing. It is not a drum stick.” Look down at your hands; your pen or pencil is in your hand again and you’ve been bouncing the point off the paper you meant to take notes on. You’ve got the date and the name of the class and some doodles. The beginning of a letter you want to send. A scrap of C code with an eternal loop printing FUCK SOCIOLOGY to the output window. You don’t really recall doing any of it. But none of it has to do with the class you’re in except maybe the code loop.

    “Sorry.” Start over from the beginning of this card.

  20. ismith, I have a lot of thoughts about your question, although some of them are unkind (how do they know that none of the students participating have a disability? Have they decided they know what disability looks like, so no students with a disability are coming on this retreat? *sigh*).

    But, an activity that may be useful if one is focusing on the “big three” “real” disabilities: Deaf, Blind, Uses a Wheelchair. And, of course, if one assumes that no one has any disabled family members of friends already.

    Pull students into small groups and give the following introduction:

    You make a new friend at university! This new friend has many similar interests to you! You want to invite your new friend to your house / your apartment / your favourite coffee shop / whatever.

    Each group gets one of the following scenarios. I’m sure people can think of more, and more appropriate ones. I’m just brainstorming.

    1) Your friend is a full-time wheelchair user. Describe any difficulties they may have in getting into your chosen space, and how you and your friend might work together to eliminate these barriers.

    2) Your friend is blind. How are you going to give directions to your chosen location when your friend can’t drive? How comfortable or uncomfortable with giving directions that don’t rely on “watch for the red house” or similar visual cues?

    3) Your friend is Deaf and uses Sign Language. What student events have you attended that would include Sign Language-users? What student events have you attended that would not?

    Afterwards bring students back together into the larger group. Discuss the answers. Ask them explicitly if they think the event they’re at would be accessible to students with disabilities. Ask how they would work together as Student Leaders to ensure more accessible options for students.

    Ask them as well what other sorts of barriers people with disabilities would face in attending university. As leaders of the exercise, I would explicitly talk about non-visible disabilities. I would also discuss barriers that students face when people have decided “what disability looks like,” especially in a classroom setting.

    This isn’t a disability simulation, it’s a thinking about disability simulation.

  21. …Had a bit of a scare, yesterday. My wheelchair battery is old, and I need a new one. So I wanted to call my local durable medical equipment store, but I couldn’t remember the number… So I thought to look online (Since we all know how easy it is to use a six-pound paperback Yellow Pages — which seem to work with the same mechanics as a Slinky[tm] toy)

    I could have bet my life that the name of the store was “rehab medical” — but google searches weren’t bringing up anything. Even when I changed the keywords to “Wheelchair Batteries. — all I got were medical supply places in other states, or online marketplaces. Even searching online “Phonebook” for businesses was bringing up nothing. I began to have the panicked thought that they (the only local dme place around) had gone out of business.

    I explained the problem to my aide, when she got here, and she drove by the place it used to be. It’s still there; I just got the name wrong (Rehab Healthcare). Whew!

    But I’m still pissed that it wasn’t listed in the Business Phonebook online, even when I searched by category. …Granted, this wasn’t the official phone book put out by the phone company — it’s something done with local commerce boards, or something. The local commerce boards should know that real customers are living in their cities who are just as likely to need power wheelchairs are they are to need their roof repaired, or their livingroom painted (Which are business listings that came up instead).

    In other news: I am really depressed about the oil spill in the Gulf of Mexico.

    *sigh*

    So thank you for the puggle. Also: yes, know what gender two different animals are probably Will help with breeding programs.

  22. I’ve never participated in chatterday before, so I hope this is OK to post. It aked what you’ve been reading or sites you’ve been to. A young woman with Lyme disease asked a whole bunch of other women with Lyme, “What would you like your family and friends to know?” and it’s up on her blog. I thought it might be of interest to any Lymies here, or especially to non-Lymies who want to learn about especially neurological chronic Lyme. It’s at http://bit.ly/9LaDVk. The blog is called Infectiously Optimistic. It is “not without problems” from a disability rights perspective, but it has some good stuff, too. In the interests of full disclosure, one of the people she quoted is me.

  23. (how do they know that none of the students participating have a disability? Have they decided they know what disability looks like, so no students with a disability are coming on this retreat? *sigh*)

    Anna: yeah, absolutely. To be clear, I’m referring to the organizers, none of whom identify as disabled, or at least none of whom are out about it. So when they say “we’re not qualified to talk about disability”, that’s what they’re referring to. Honestly, I think that recognizing that, and asking for input from students like me is a major step forward.

    There seems to be a general consensus among non-NT students here that the existing student culture does a better-than-expected, though still far from ideal, job at not stigmatizing psychiatric disabilities, so I’m also trying to get the organizers to talk a bit about why that is, and how to get the new frosh to make a connection between those and more visible disabilities, which tend to be more stigmatized on campus. Encouragingly, mentioning invisible disabilities as an important topic in my last meeting with the retreat organizers got a big: “oh! Of course we need to cover that”, so they’re definitely open to new ideas and input.

    I’ll be passing along some of the ideas that you and Kaninchenzero suggested – thanks!

  24. jsmith — sorry I didn’t reply to your question earlier, but it has been tumbling around in my head…

    “Rural retreat” — is that a camping situation? There are few things as inaccessible to the mobility impaired than camping and it’s something that really annoys me when friends invite me to a camping weekend /festival thing, telling me “But it’ll be fun!” Just tell the organizers that you’re in a wheelchair, they’ll make the cabins accessible for you!”

    Uh… No. Does not work that way… Even when the organizers have the best intentions and want to be inclusive. If they haven’t thought about and built for accessibility ahead of time, it’s not something that can be done on the fly.

    Anyway — following on Anna’s thinking-about-accessibility exercises: Maybe include some photographs of different venues, and asking “What’s wrong with this picture?” type questions… such as my local art museum: the only wheelchair access is a small ramp to a locked door. You have to push a speaker button and request a guard come unlock it for you. You have to be able to see the sign with the instructions telling you this, be able to push the button, be able to speak clearly, and be able to hear the reply. Lord help you if you arrive at the museum alone, and are blind, deaf or speech-impaired as well as needing a wheelchair.

  25. ismith – late to the party as usual, I just had an idea.

    Because you mentioned the stigmatization of mental illnesses on campus, there could be a lot of work on that, and I have one idea, though it depends on what your school has.

    My school has the “psychological services center” – it’s open to the public with a sliding pay scale, which is amazing – but students only pay $7 US and your parents don’t have to know, your insurance doesn’t have to know…

    They could have a skit where one of the workers talks about how zie is struggling and zer mood is all over the place (or something) and then a friend says, who don’t you check out the PSC? (or whatever it’s called) They can really help, etc etc etc.

    We had something similar, not about the PSC, never never. (sigh) but a poorly-acted skit where student A had a problem and student B told them how they could get help.

    Just making it part of the resources and help on campus would be a good way toward de-stigmatization.

  26. Hi! I used to comment here under a different name but I’ve changed pseudonyms for privacy reasons.

    I’ve never done anything activist-y before, but I recently joined a local radical disability group. It’s both exciting and intimidating. We can’t even hardly afford to pay ASL interpreters. And I vacillate between thinking I’m not “disabled enough” to be there, and worrying that I’ll hit a rough patch disability-wise and have to drop out, as I have with so many things.

    I love echidnas. I think folks down under are so lucky that they get to share their corner of the world with monotremes.

  27. Hi everyone,

    I’d like to suggest a revision to Kaninchen Zero’s note about fragrance-free products in her comment
    above. I have multiple chemical sensitivity (MCS) and think it’s important to challenge the myth that fragrance-free products are all unaffordable to low-income people and are too hard to find. One sentence in Kaninchen Zero’s insightful comment seems to endorse that myth.

    Kaninchen Zero’s first scenario (in which the reader is asked to imagine having a chronic fatigue/pain condition) makes the following claim about shower products: “[Y]ou can’t afford to buy fragrance-free products; they are all, for some reason, more expensive and harder to find.” However, many fragrance-free products for the shower are both very inexpensive and easy to find. For example, one of the founders of frugalculture.org writes, “We spend all of about $35 on soap every several years, in the form of a gallon jug of Dr. Bronner’s” (concentrated) castile soap, diluting it with about 1 part soap to 8 parts water. Dr. Bronner’s liquid soap, which comes in a fragrance-free version, can also be used as shampoo. This fragrance-free soap is widely available in health food stores (at least in the US) and is also available online. Some other inexpensive and easy-to-find fragrance-free products for the shower (and for other personal care uses) can be found here and on the East Bay Meditation Center’s partial list of products for chemically sensitive people and their allies/friends. (Note: Not all of the products on these webpages are inexpensive and easy to find, but some of them are.)

    One reason that I think it’s important to not perpetuate the myth that fragrance-free products are all too expensive and hard to find, is that this myth gets in the way of creating the fragrance-free policies which are necessary to prevent access barriers for many people with MCS, asthma, etc… . When I’ve requested that various events be fragrance-free to allow access for many folks with these types of disabilities, some people have responded by claiming that it would be classist to do so.

    P.S. I’m grateful for FWD/Forward and I’m sorry I didn’t unlurk earlier to say what a positive difference it makes in my life. Kaninchen Zero — I’ve read many of your postings, find them insightful and have learned much from them.

  28. Alizah,
    Thanks so much for that comment. I didn’t see the previous one about FF products being expensive.
    I’ve heard this claim, too, and it’s simply not true. Some are more expensive, some are less.
    Saying that MCS accommodation is classist also denies the reality that most MCSers are low income, especially single women. Many of us use baking soda (which you can buy in bulk for very cheap) for washing ourselves, our homes, etc., taking the place of what many others use dozens of products for.
    Of course, if you want special, separate products for shampoo, soap, hair gel, conditioner, skin moisturizer, shaving lotion, etc., etc., then that really adds up — but that’s the case for the fragranced versions of these products, too. I, personally, am willing and and able to pay for a FF shampoo, conditioner, and a liquid olive oil soap. Although, since I only bathe abut once a week, a little goes a long way! My partner uses none of these things, using just chef soap (bar soap) on her hair and body.
    Basically, you can spend a lot or you can spend very little on personal care and home care products that are toxic and fragranced or that are fragrance-free and nontoxic; it all depends on what you want and how you want it.

  29. Thanks, Alizah. The claim that fragrance-free policies would be classist is deeply flawed: asking people to not wear perfumes and colognes or to not use air fresheners and scented candles isn’t an added expense. (I did finally get my wife to hear me regarding air fresheners — I can always still smell what they’re meant to cover and it’s sickening — though she doesn’t listen as well with respect to scented candles.) The lists provided are helpful.

    I find in my life fragrance-free products are harder to find and/or more expensive. Having to get things by mail order is fine for me — I live in a large city well-covered by delivery services — but it’s a problem for people who live in rural areas. Buying in bulk when space is very limited is not feasible. Where I live there’s only Whole Foods on the brick and mortar front: The selection isn’t great and the prices are high.

    And I personally won’t use any Dr. Bronner’s brand products; the exhortations that come with them aren’t good for me. I have similar issues with other products claiming spiritual or religious effect.
    .-= kaninchenzero´s last blog ..ow, continued =-.

  30. Y’all know what just stating, flatly, that fragrance-free products are neither expensive nor difficult to find doesn’t do? It doesn’t address the failure of corporations to make fragrance- and dye-free products widely available. Like stating, flatly, that people can find fresh fruits and vegetables at reasonable prices, it fails to engage the structural inequities which make them cheaper and easier to find in places like Seattle than in places like south Dallas. It definitely doesn’t address the massive amounts of money spent (at least in the US media market) to convince consumers that air fresheners and scented candles and the like are required for the life they should aspire to. So yeah, there are ways in which you can clean yourself and your home without fragrances and without spending a whole lot. But there are still environments where that’s not true and there are still reasons to keep pointing that out.
    .-= kaninchenzero´s last blog ..ow, continued =-.

  31. @kanichenzero:
    i would never say that FF products are always inexpensive or easy to find. Some places they are easier to find than others. Some of them are cheaper than others.
    But, FYI, I live in a rural area. MOST severe MCSers I know live in rural areas. We have fled to rural areas because cities kill us, literally. Of course, in rural areas, we have to deal with the pesticides on crop farms. A lot of MCSers move into the woods or the desert. Most MCSers are homeless at some point. So the issue of shipping and finding local products and poverty are all extremely relevant to MCSers, and yet, we all manage not to use FF products, because we don’t have a choice.
    I would also say that making a flat statement that rural areas are always harder to find FF is not necessarily so. I live in a town of 900, and less than 3 miles from my home is a small general store that sells FF shampoo and soap and detergent along with the toxic corporate stuff.
    Since most severe MCSers can’t go into stores, we generally do as much shopping as possible by mail (internet/phone/catalog), depending on whether we’re able to tolerate computers, phone, and /or paper.
    Dr. Bronners is just a brand name for liquid castille (olive oil) soap. I don’t buy it either, but you can get any number of other varieties of castille soap without the propaganda. Where I live, some people make it as a small business. But you can also buy other brands.
    OBVIOUSLY I would like the producers of Tide and Bounce and Chlorox and Pantene and all that other stuff to stop making it and start making products that don’t poison me or the environment and put not-yet-chemically injured people at risk. Obviously I would like them to switch and make widely available, FF, nontoxic products instead. However, the FF, nontoxic products exist: vinegar exists. Baking soda exists. Bon Ami exists. Olive oil soap exists. Hydrogen peroxide exists. People can even make a lot of “products” (gel, moisturizer, hairspray) themselves using food items like gelatin, oil, and salt. So, the corporations pour their money into advertising that convinces people — especially (though certainly not limited to!) women, people of color, and immigrants — that to be attractive, successful, a real American, to have “made it,” to not be offensive to the dominant/privileged class, to escape the oppressive systems they suffer under, that they NEED these toxic fragrance chemicals, always a new and improved one coming out that will fill the “need” that the commercials have created. I certainly don’t argue this point! However, IME, MCSers are in the forefront of activism against corporate control of America vis-a-vis chemicals and health, so blaming MCSers for the power structure that leads directly to making us and keeping us sick doesn’t make sense to me.
    On a personal note, if you are looking for FF products, email me with what you need, what the cost is of what you spend now, and whether you can get it by internet (presumably you can since you’re participating in this discussion), and I will send you resources. I get most of my products from NEEDS — Needs.com. They sell discounted.

  32. p.s. I just did this search. Here is a link to all the NEEDS soap. http://www.needs.com/prod_detail_list/s/4
    It looks like they start at $1.89 for a 4oz bar. I don’t know how much “regular” soap costs because I haven’t bought any since 1995. However, if this costs too much, you can, for instance, buy a bottle of 7th Gen dishwashing liquid and dilute it x3. Then you have dishwashing liquid, soap, and shampoo, all in one.

  33. With my hair type, I am limited in the products I can use for it. I buy the unscented version of Jessicurl products, but I don’t know if that’s unscented enough and the websites I checked either didn’t list products for Black American hair, or only listed a few that don’t fit my needs at all, considering the variety of hair types Black people have.

    I don’t want to hurt anyone, so, I’d like to find a way to cause the least discomfort possible, but I also limited in options by being Black and in Maine, along with only having found a single deodorant that works due to med side effects, even after trying tons of natural things. As a non driver who is on a low income and generally barely makes it through the month, yes, finding unscented things is a challenge.

    I would indeed like it if companies made more unscented things, but I’m also limited in options. Hearing that I just need to try harder is, well, it isn’t nice feeling.

  34. Even researching what is truly unscented can be very difficult. Products can be labelled “UNSCENTED” while still containing “masking fragrance”. I wonder whether some of my reactions to commercial products are connected with this. My memories of that one wash with Dove “soap” are still with me.

    It’s also quite difficult around here to buy real soap – as in, made with lye & grease, not detergent – that isn’t made primarily with tallow, coconut, or palm oil. (Dr Bronner’s, which isn’t available here anyway AFAIK, is coconut-oil soap, not an actual castile). I’ve ended up making my own, because my skin does best with a well- superfatted very high olive oil soap that also contains high amounts of mango butter and/or cocoa butter (10-15%), and this just isn’t available commercially for under about five dollars a bar, more commonly seven or eight. But many/most PWD aren’t able to do that, and of course shouldn’t be expected to.

  35. @Laurelhed-
    Yes, this is true. It can be mighty confusing. Some products, esp. those made by the big corporations, will put “unscented” on a product, and then they use a scent, plus a MASKING scent, and this makes it even MORE toxic. These are the same companies that will make something “clear” and try to trick people into thinking that somehow this is safer.
    This happened recently when my PCA, trying to do her best, bought a Vaseline brand product that said something like “natural scent” or something else that made her think it was unscented, and she was making me sick for a week till that junk had finished seeping out of her pores.
    I usually tell people to look for products that say something like “100% fragrance-free, hypo-allergenic” or “No perfumes, dyes, or colors,” as those are more likely (but not guaranteed) to be actually unfragranced. If it says “scent free” — or frankly, in any case — I recommend reading the ingredients list (if possible) OR if you have someone in your life with MCS, ask them for a list of what they tolerate on others.

    @thetroubleis-
    Yes, I’ve run into this before. I can imagine you’re frustrated. I’m white, but was collecting info on this topic — MCS-safer products for Black hair — specifically, because I do a lot of resource and referral (usually unpaid) on safer products, MCS, disability, etc., and I was aggravated by the lack of info. Unfortunately, I haven’t been able to access most of my documents since I switched OS on my computer. I don’t remember hearing about unscented Jessicurl, though, so I can’t say. I know a lot of MCSers in southern Maine, though, so I could try to connect you, if that’s of use.
    What I remember from talking to African-American MCSers about what they did was things like an Afro/natural or dreadlocks, which didn’t require products. I know that everyone’s hair is different, and also, MCSers don’t have a choice, often, about how we look, so we just do what is safest, which is not always what people who have a choice want to do!
    Otherwise, if someone was looking for something for Black hair, I’d try to find out what the scented product did (function it provided) and then suggest things to experiment with that might work in the same capacity. MCSers usually do a lot of testing of products to see if they’re safe, and some of the MCS-specific catalogs sell samples for this reason, however I can understand that if you don’t have MCS yourself, and no extra money to experiment (with something that might fail dismally), you would not be keen on this approach, but until I can dig up my document or do more research, I don’t have specific product ideas. (Sometimes, if someone has to go FF for my benefit, if they buy a product that they don’t like, I will buy it off them or swap with something else I have. I try to buy bulk to save money, so I have that privilege.)
    I remember several months ago, AOL did a feature on young African-American entrepreneurs, and one was a woman who started a product line of environmentally safer hair and skin products. I was very excited about this, and I went to her site. She wasn’t using the usual toxic chemicals, but it was all heavily scented. I was hoping market pressure or requests might get her interested in FF versions, too.

    Anyway, I’ve gone on about the MCS product issue on this thread too long. If anyone does want me to look into products for you, go to my site, write me a comment on the MCS page, and I’ll email you. (I won’t approve the comment for public consumption unless yo want me to.) I can’t make promises, but I’ll do my best.

  36. Sharon: You’re getting real ‘splainy (while also having some important details incorrect), you’re universalising, you’re not listening to other PWD who are sharing their lived experience, and your comments are getting longer and longer. Please rein it back. In addition, please be aware of your nation-centrism, which is also explicitly addressed in our comments policy.

  38. I’m okay and thanks. My main point just was that even when folks do want to do this stuff, sometimes it’s really not just a matter of not trying hard enough. I think this has some similarity to the conflicting accommodations issue that can pop up.

    Anyhow, I’ll shut up now.

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