Or, hey look I wrote something!

Guest Ableist Word Profile: Crutch at FWD/Feminists with Disabilities

This entry was originally posted at sasha-feather.dreamwidth.org. If you choose, comment there using OpenID.

The Pain of House

Other things I've been meaning to link to, while I'm at it:

How to Squander Your Life

Geek Feminism Blog (my other fav right now)

How to F*ck up and Apologize

Best (Worst) Fantasy Covers. LOLtastic!

This entry is for the Disability and Work Blog Carnival. Thanks to Liz for hosting it.

In Ursula K. LeGuin's The Dispossessed, in the Pravic language, the word for "work" is the same as the word for "play".

There are a lot of ideas in this book but that one stood out for me because right now I am unemployed, and that has forced me to reevaluate my identity and what it is that I do. It seems to me that in The Dispossessed, work/play is what occupies a person's time, and what one does with the people in one's community, because community is very important to the culture of Anarres.

So, what do I do?

Like many chronically ill people, the first thing on my mind a lot of days is management of my disease. It's a complex and demanding job in itself. Some of it you might expect: I make doctor's appointments and try to keep them, I manage my medications and supplements, I try to keep some sense of my symptoms and how they are changing. I try to exercise moderately, get enough to eat and drink, avoid foods that I think will make my symptoms worse. I try to get enough rest, think about pacing, try not to overextend. All of this can get complicated because my symptoms keep changing, but it's not really an unexpected part of living with illness.

What has been more unexpected for me is the huge emotional toll of chronic pain and illness. Particularly this year, I've done a lot of emotional work around this issue, which has taken a lot of time and energy. And I've learned that emotional work is hard work, undervalued work.

Those things are very hard to talk about in casual conversation, like when someone asks, "What do you do?" So here are the things I talk about more often:

*I volunteer for WisCon, the World's leading feminist science fiction convention. I read feminist SF/F novels, graphic novels, and other books. I am a member of two book clubs (although I don't always read the books.)

*I am a disability and anti-oppression activist. I've been learning more about this mostly through reading the internet-- people's journals and blogs. I also listen and talk to people face-to-face. I usually follow (at least somewhat) whatever the latest internet imbroglio is, and sometimes I will go back and read older ones ("Feminist history needs to be written down!"). This also takes a lot of time and is something that can be painful for people: although I seem to be in a place where I can do it now, easily, this hasn't always been so, and it's not something everyone has the time or emotional resources or interest to do. Lately I am thinking about it a lot in terms of community.

*I am a moderator of access_fandom, a community for talking about access and disability issues within fandom. I intermittently work on the Wiki associated with this, Access Fandom Wiki, which is a place people can go to figure out how to make events such as conventions more accessible. So far there are two pages up, Attitudes and Signs; those were written by jesse_the_k.

Right now in the comm three of us are doing in linkspam on Feminsting and disabling language, check it out.

*I'm involved in Media Fandom: I read and write fanfic, I beta read fic, I make icons, and I consume other fanworks such as podfic, fanvids, art, and meta. I must recommend right now dira's post on fanfic and the suppression of women's writing. Fandom is mostly (but not all) women, and fannish work is devalued work.

I enjoy the community aspect of fandom particularly, and so I try to support the community by going to fan gatherings, by leaving feedback, by being welcoming towards people, by being respectful. Fandom is a particularly supportive community, at least for me, because individual members have worked to make it so. (You see what I did there?)

---

I have personally benefitted from the feminist idea of work being a socially constructed idea, and "women's work" such as housework, childcare, and care of the elderly and ill being often unpaid or underpaid and devalued by society. The reason women are paid less than men is because women's work is undervalued. Women often provide emotional support for others, they build friendships, they build communities, they build homes. All of this takes time and effort.

The categories of women and disabled people intersect hugely. The work of disabled people is also devalued, and disabled people face huge barriers such as pain, exhaustion, mobility and cognitive impairments, communication differences, discrimination in the work place and the wider world, and a lack of basic access to buildings, services, and transportation.

These oppressions also intersect with race, class, sexual orientation and identity, age, and probably other factors that I am unaware of or forgetting.

So I think that the work I am doing right is pretty important, interesting, and exciting. It's just hard to sum up with a job title. :)

jesse_the_k posted about the best TV documentary she has ever seen, from "This American Life" with Ira Glass.

You should read her post, or you can go directly to the online video which is uncaptioned.

---

I think I forgot to say it in my own journal! kaz, were_duck, and I have been collecting links on Feministing and disabling language and posting roundups in access_fandom. Check it out. It's cool to see people talking, cool to see so many voices.

---

Generally for me, learning about disability is frankly a survival tactic: it gives me tools, resources, communities, ways of thinking that help me with a sometimes very challenging life. But I also think that DS is interesting to learn about, it is concerned with justice and feminism and anti-oppression, it involves ethics (always something I've been interested in), thinking about bodies and embodiment, thinking about the way we treat people as a society; it's about humanity, and the wrong messages we're given growing up, like how if you only try harder you can change, you can be better, stronger, smarter, prettier, more able; and how to undo some of those messages.

And even if you are able-bodied now, it is likely you won't always be, so, as Jesse says,
"Learning why disablism is wrong now will make your life easier later."

OOOOOH there is some fail going on at Feministing with regard to ableist language.

Click at your own peril.

For background, there is the Open Letter to Feministing.

I've been collecting a few of these in my Mini-Link Spam on Disabling Language, and trouble has some more links here, if you are someone who likes to read up.

I found particularly helpful the post, Why Inclusionary Language Matters, and if you read just one link, read THIS ONE.

So stop it. Stop using exclusionary language. Start including people.

And stop trying to defend it. If you’re too lazy to find a better word or phrase to use, that’s your problem, not society’s. If you can’t be creative enough to think of a different word or phrase, a word or phrase which does not exclude or silence someone, you apparently have not heard of a thesaurus.

Since linkspam seems to be on hiatus due to drama or something? Maybe people could collect links as they see them and post them in the access_fandom comm or in disability comm, what do you all think?

There is a language convention in journalism that goes, "she suffered from OCD", "he suffers from Parkinson's disease", "sufferers of chronic pain."

I would prefer the more neutral language "has". "She had OCD," "he has Parkinson's", "those who have chronic pain."

What I mislike the most is the implication that having a disease automatically means suffering from them, when in reality many people who have diseases manage them well; and even if they don't, the tone is one of pitying and emotionality rather than neutrality.

Obviously having a disease usually involves some suffering. But John Kabat-Zinn (and others) tell us that suffering does not automatically have to follow from pain. "Pain is inevitable, suffering is optional," as the saying goes. Diseases will always exist. Suffering does not have to be equated with having a disease.

I realize that I am more careful with language than a lot of people are. I realize that some of these battles I'm not going to win. But one thing we can do: I don't say that I suffer from chronic pain. I say that I have it. One simple change.

If you are comfortable editing Wikis, you can go into Wikipedia and make changes like this. Another one is change "confined to a wheelchair" to "uses a wheelchair". (Idea from badgerbag.

Mini Link Spam consists of my open tabs!

I've created a new community, access_fandom, for discussion of Access and disability issues at SF conventions and in fandom in general. Join! Post!

sasha_feather:Disabling Language WisCon panel report

sophy: WisCon panel notes: Rethinking Disability Metaphor

sasha-feather: not trying to take your insults away from you

vito-excalibur: How to Lose friends and irritate people

piranha: ixnay on ableist language

coffeeandink: ableism: comment policy clarification

Feel free to drop me links in comments.

ETA:

lim: Let's make a deal, internets

jesse the K: (Color) Blindness as a metaphor to racism

Feminists are fine with being bigots if it's just ableism at Shrub.com Blog

Words and Able-ism at Feminist Philsophers

Fighting Ableist Language at Feministe

Why Not to Use the Word Lame: I think I'm starting to Get it at Alas, A Blog

upstart-crow: Psycho Donut Shop

Lame Duck at Gimp Parade

ETA2

oyceter: Comment policy

sasha_feather: "Suffers from"

This Ain't Livin': An Open Letter to Feministing

This Ain't Livin': Why Inclusionary Language Matters"

Small Strokes Big Oaks: On Abelist Language and Feministing

Random Babble: Go read

If you want me to interview you--post a comment that simply says, "Interview me." I'll respond with questions for you to take back to your own journal and answer as a post. Of course, they'll be different for each person since this is an interview and not a general survey. At the bottom of your post, after answering the Interviewer's questions, you ask if anyone wants to be interviewed. So it becomes your turn-- in the comments, you ask them any questions you have for them to take back to their journals and answer. And so it becomes the circle.

Wonderful questions from wintercreek

1. Tea or coffee or something else?

I have recently come around to tea: iced tea, chai, greens, herbals, mint, chamomile, and others. I like to hang out at a tea house, which helps my appreciation, and I'm so happy to have started liking tea because it gives me more beverage options! I don't like coffee-- it's bitter.

2. Roadtripping with podfic: what are your observations? Are there podficcing conventions you noticed that could use some changing? Practices that one podficcer has that others should adopt? General awesomeness of podfic?

It was fantastically awesome and made our 7.5 hour trip go really fast! We actually looked forward to the drive in order to hear some stories we had picked out. I liked the readers who included the fic headers such as warnings. Our biggest problem was hearing the fic, which is a technology problem involving the iPod, the car stereo, road noise, fuzzing out due to being near stop lights and such; I'm not sure what's to be done about that. We had the stereo and iPod up as loud as they would go and still I had to giggle silently so I wouldn't giggle over the sound of hilarious fic!

I am relatively new to pod fic and I just loved it in this context. Most of the stories I had read before but not heard before, and it enhanced my love of them to hear them read aloud. Car trips are my favorite way to listen to things; even music I don't listen to all that much outside of driving. So this was an ideal opportunity to get some podfic time! I'm reflecting a bit now on the openness of sexuality in fannish communities and how awesome that is--- women listening to smut together and not finding it weird. I didn't have anything like this before fandom! I'm so glad to have it now.

3. Talk to me about photography. Does it affect how you see the world even when you don't have a camera in your hands?

Photography has nurtured my natural tendency to observe the beauty of the world around me, which is something I love about it. I notice natural light; when I'm waiting for my tea order I might think, ooh, the light is nice here, and I'll take my camera out. It's also turned my eye toward the beauty of the city in a way I like, since I'm deeply a nature and country person and it's taken me a while to learn to live in, and love, the city.

Something I've been very conscious of is putting up photos of people on the internet (see WisCon 32, cough cough), and I've been actively trying to apply this to my own self-image as well: post photos of myself, and allow others to do so. Don't be overly critical of those photos. I'm working on this. I do untag photos of myself on Facebook for reasons of vanity, but not often. As a feminist I try to own the way I look; I try to give and take the advice of being as kind to myself as I am to my friends, and to love the way I look. It's a process, and photography has helped, because I do take self-portraits. I think the way a photographer looks at other people, and themselves, can come through in their photographs, in subtle and unconscious ways-- it's best to examine that, and feminism has helped me with this, in conjunction with photography.

4. How do you find new fic to read? Rec lists, newsletters, Delicious, other?

When I was brand new to slash fandom, about 2 years ago, I relied heavily on rec lists, sga storyfinders, and intensively reading the same few authors that I knew I liked. Originally I asked for recs from fullygoldy and for a little while, she was the one person I knew to ask! These days, my fandom buddies and I pass around recs via email, and I watch my reading list/friends list for new fic and recs. I also read sga_noticeboard, but it's rare that I read outside of my favorite authors or recs from friends. Occasionally challenges and festivals will change that and introduce me to new authors--and I hope others are reading my stuff this way too!

5. What are the best and worst things about the Kindle?

I have an intense love for my Kindle the way some people love their iPods, their car, or their computer. It is gorgeous and it is my baby! I would say the best thing for me is that I can increase the text size, making text much easier to read than most print books, and that I can carry hundreds of books and fics with me wherever I go, all in 10.2 ounces.

So, generally speaking, the best thing about the Kindle is its disability friendliness. It's light to hold and carry, making it easier for those who can't hold or carry heavy books. It's easier on the eyes than computer screens, because it's not backlit. One can turn the page from both sides at the touch of a button, making it easier for those with hand impairments to turn the pages. The "Whispernet" wireless technology makes it so one can download a book in under a minute, so, if someone can't get to the bookstore because she or he is just too tired, or in too much pain, or immobile, or lives too far away, or the bookstore is closed because it's 2 AM, well, one can just download the book. PDFs, text, and HTML files are also available via emailing them to the Kindle. Also there is a text-to-speech feature! It isn't great in quality, but it is wonderful in that is universally incorporated in all Kindles!

I haven't found a personal "worst" yet. I have heard plenty of people express negative feelings about the Kindle, and many of these are around valid and important issues. Sometimes I feel like people are just saying, "I like paper books too much", and that's fine, that's their perogative, but-- I view that as a teachable moment about disability, which is when I launch into the above spiel. Paper books are not accessible to everyone. Paper books also don't need batteries and they have and will be around for millenia, so I don't feel like the one needs to be a threat to the other; I don't think it's an either/or.

Many people (including me) have genuine issues with Amazon as a company, fear the death of independent booksellers because of increased use of Amazon and eBooks, and feel that the high price of the Kindle is a barrier to access. I trust that the price will come down with time-- as we've seen with iPods and computers. I still buy paper books, even if I don't always read them (I really do prefer to read on the kindle). I support my local indie bookstore as best as I'm able. I seek sources of eBooks that are not Amazon, if I can, and I look for free ebooks. (If anyone knows of sources, do let me know!) Cory Doctorow does have some good things to say about free ebooks and pirating-- usually people who use the free items and who pirate are also the people who *buy*. They are the most loyal customers.

But, I'm still mulling over some of these ethical issues, and I look forward to seeing how some of this works out over time.

Please let me know if I misquote or misrepresent you, if you do or don't want your LJ name used, etc. Feel free to add stuff or correct me. I am posting this while drinking, be advised-- I may do some editing later.

It's refreshing to see a science fiction show with disabled characters that aren't instantly healed, aren't around for one one special episode, and are human, main cast characters that aren't defined by their impairments. When the disabled characters are on screen, they are not only there to serve the purposes of able–bodied characters. In fact BSG seems to be presenting us with interesting characters who are living for years with illness and disability, something rarely seen even in mainstream TV. The show is doing some things right. However, is the show presenting us with "faux diversity"—it looks good on the surface, but in fact relies on harmful stereotypes? We'll talk about impairment vs. disability, accessibility, and interdependency.

Panelists M: Joanna Lowenstein, Me, J J Pionke, Erin Ranft

( spoiler warning )

Please let me know if I misquote or misrepresent you.

There is another write-up by sophy here.

Insults and epithets are pervasively framed as physical and mental differences, such as "they are blind to needed change and deaf to reason." These unconscious metaphors strongly influence how people with actual disabilities are perceived—by the world and by ourselves. This highly–interactive session will include role play and brainstorming to identify these disabling metaphors, deconstruct their logical errors, and invent more accurate, yet still powerful alternatives.

Panelists M: jesse_the_k, elisem, Me, Georgie L. Schnobrich

This panel was really fun, with great panel and audience participation. We started with a "language amnesty" declared by our mod, meaning we were going to throw around words that might offend some of us, and talk about why they are offensive, and come up with new words that might replace them.

Sometimes in arguments or discussions, we might object to a statement by saying something like:
How lame!
That's crazy talk!
That's retarded!

Jesse asked us what words "burn our cookies the most". Elise doesn't like "stupid" because it is part of a general privileging of a certain type of intelligence, and being smart doesn't automatically mean one is right, or ethical, etc. She also doesn't like "lame" and suggested that it's so prevalent because it has become an accepted replacement for "gay" on the playground-- a word you won't get punished for.

Georgie doesn't like how "crazy" is an automatic dismissal, a way of making one's self feel comfortable again when one is uncomfortable.

The audience came up with many others: spaz, psycho, short bus, retarded, blind, deaf, dumb, idiot, moron, cretin (the last three are words that used to be medical terms for the developmentally disabled). Some discussion ensued about kids using words on playgrounds, and how do we stop these insults-- by coming up with new metaphors, or by generally making society more accepting of disability? (I don't think it's an either/or-- I think it's tied together, and we do both at once.)

There was also some discussion of the appropriate use of terms-- when is it OK to say crazy or paranoid. Certainly running upstairs to get away from the axe-wielding man in the horror movie is not wise and perhaps even crazy behavior. Thinking every car on the road is out to get you is paranoid. But overusing these terms can be insensitive and also might take away from their real clinical meaning (as with depression). Also someone mentioned how people will say "OCD" as a way of joking about being clean, but that's insensitive to people who do have OCD and know that it's not a happy fun thing to have.

Mary Ann Mohanraj was in the audience and made some great comments about how it can be sad to lose some of these terms, because they are rich terms with a lot of meaning-- she used "gypped" as an example. But she doesn't really need another term for "cheat" (why not just say cheat?), and the political gain is worth it.

Then we came up with many new terms to replace the ones on our list. Silly, ridiculous, foolish. "Let's talk more like Jane Austen", Georgie said at one point, making the audience laugh. Elise suggested that when you have to insult someone, why not just call an asshole an asshole?

Someone has a list of these terms (heyiya?) but I don't! An audience member said why not use occupational terms like cooking or gardening?
You're just planting weeds!
That's burnt stew! You can't even boil water!
Rancid, putrid, spoiled, uncooked
Some already exist: doesn't have a row to hoe, can't hold water
Out of tune
Sand in the gears
buggy (as with computers)
blue screen of death
epic fail
"the potato salad of your reasoning is rancid" was an audience favorite.

antarcticlust suggested "ridiculous" as a replacement for "retarded" because it conveniently starts with the same letter.

At the end we talked a bit about reclaiming negative terms. People within the group always have more freedom to use terms (like "gimp" and "crip") than those outside of it. I talked about "crutch" as a metaphor, which is an idea I picked up from somebody on my f-list.

"You're using X as a crutch" is usually used as a negative, as a criticism, as if crutches are bad, and as if they are optional. First of all-- crutches are *good*. They help people with disabilities get around. Secondly, people don't use them unless they need them! This metaphor gets at dependency as a bad thing (why aren't you standing on your own two feet), when in reality, crutches are just tools, like hammers. On the other hand, giving someone a lift, a leg up, or a boost, all are good metaphors! So I propose that we all start using the metaphor "good crutch." For example, Elise said, "I was really happy to have work as a crutch to help me through a grieving process." Later in the weekend, general_jinjur referred to her OTW buttons as a good crutch for assisting her in talking to people.

Also later in the weekend, Cat H. mentioned "brainstorm" as ableist language, because it a) refers to epilepsy, and b) privileges thinking quickly.

Thanks to all our great audience members and panelists! I know Jesse and I were planning on talking about how "somatic metaphors" are allowed and are not necessarily ableist ("I see your point"), but we never got to that.

Hi friends-list!

Does anyone use a screenreader, or know of anyone who does, and would be willing to volunteer some time? We would like to check our WisCon publications for accessibility for the visually impaired, and the best way to do this is to have someone who actually uses the technology give it a go and beta the documents for us. The documents are PDFs of the Souvenir book (36 pages), the existing parts of the Pocket Program Book (which is almost done I think), and possibly other documents in the packet such as the restaurant guide. You could volunteer for one or several or all of these things, read them, and let us know about any problems so we can (hopefully) fix them in time for WisCon, where they will be available in e-packet form.

Thank you!!

(and feel free to pass this on/link it)

May 1st was Blog Against Disabilism Day. I read some good posts:

haddayr: It depends on the kind of stare

msf_staff: Kasey's Guide to Offering a Disabled Person Assistance Without Being Irritating

HAM.BLOG The Drug Thing; Invisible Illness Bingo (via Jesse_the_K)

I seem to have stalled out on Mists of Avalon (I'll finish it eventually!), so I took a break to read Limbo by A. Manette Ansay, a memoir.

On her website, she writes, Memoirs about illness, much like personal interest stories on TV, always seemed to focus on people who had triumphed over adversity, who’d fought until they got better, who’d never lost faith. I wanted to write about what it was like not to triumph over anything. To accept that I didn’t know what was wrong, and that I probably never would. To make peace with the mystery that was my life and the shape that this life had taken.

You can see why I might like this book! And I did! I loved it! 5 stars!

( Read more... )

This collection of links may be updated frequently-- 14 Valentines is a lovely excuse for me to do something I've been meaning to do for a while!
Thanks jesse_the_k for many of these!

Disability: Theory, Resources, and Discussions

Diary of a Goldfish: The Social Model of Disability
Ragged Edge Magazine Online
(Color) Blindness as as a Metaphor to Racism by Jesse the K
Deconstructing Cheney's De-inaugural Wheelchair by Liz Henry
I'm just a soul whose intentions are good by lim
Portrayals of People with Disabilities in Star Trek
Changing Expectations

Migraines and Headaches
Migraines are a disability that disproportionally affect women.

National Headache Foundation
Headache Network Canada
The Daily Headache Blog
I really like this blog! A lot of what she write resonates with me.
On the Right and Left Sidebars are links to many other resources, including other migraine blogs
Arms at Rest by Siri Hustvedt, an Op-Ed about coming to terms with with a life as a migraineur

Book Recommendations

Living with Chronic Illness by Cheri Register
Also titled The Chronic Illness Experience: Embracing the Imperfect Life (link to WorldCat)
Decloaking Disability Bibliography By Kestrell -- A annotated list of (mostly) SF/F books dealing with disability

Misc

hidden_diseases

Special for 14valentines, a reminder to ask your doctor or health care provider about the HPV Vaccine to prevent cervical cancer.

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If you have more links or book recommendations, leave a comment!

This posts contains spoilers through the current episode, and that's the only reason for the cut!

( Read more... )
Props for inspiration for this post go to thingswithwings and her BSG webisode/episode review here!

(+/-) I am very pleased and impressed with the way WisCon and the Concourse handled the outbreak. I am of course very sorry people got ill! But the response to it is just what I would have wanted: lots of signage, hand sanitizer, the smell of bleach, surveys for those who fell ill in an attempt to track down the source. I'm a microbiology and epidemiology nerd: I'm interested in these things. I shouldn't expound, though, until I know more.

(+/-) Being at WisCon makes me more aware of Creepy Fuckers (TM) and more willing to acknowledge and validate my own feelings about them. This morning I went to my happy beloved pharmacy, and discovered that Creepy Pharmacist is now working there (OH JOHN RINGO NO). I left the old pharmacy specifically to avoid THIS GUY. And now he has invaded my happy female-friendly pharmacy! (This would be the one on Monroe Street, I suppose I should say.) I can hope he's temping.

Why he's creepy: Say you're getting a prescription for Prilosec, just as an example. He'll fill it, then say, "So you're having some acid reflux problems?"
I suppose he thinks he's making conversation. But there's a duh factor here (no, I'm taking it because I like the taste of the pills, dude), and also an invasive quality to the question. I don't like talking about my health issues to people I don't know, and the other pharmacists-- the nice women who know me by name-- don't ask these questions. They leave well enough alone. I mean, what if I were getting contraceptives? "So, you don't want to get pregnant, then?"

I told him today that I was numb from the dentist and didn't want to talk (true), but I should have said, "I'm not comfortable talking about that." I think that I could also tell the other pharmacists that I don't like this guy, if I have an opportunity to do so.

And now for the Actually WisCon-related

(+) There's still a lively discussion of the Elves and Dwarves clusterf*ck panel going on at brdgt's journal here (locked). I feel like I'm dominating that conversation, but oh well. badgerbag transcribed the panel here, and took some great video clips of reactions to the panel here. Bridget's on there, and Goldy and I are seen laughing along.

(-) I don't really want to talk about the troll. I'm torn between curiosity and self-protection (ie, friends of mine said looking at the posts made them "physically ill"). Ugh. ETA: Curiosity won out. Some of of my photos (ones that I took, and of me and my good friends) are in the comments. I feel like I've reached a new level of internet involvement by being inadvertently included in huge awful drama. These people are horrible. I don't care that I'm pictured, but I'm angered in general.

(+) Something that came up at the BSG panel (I think Candra Gill said this), is that illness or disability is used as a marker for specialness, for prophecy, for redemption. There's an SF/F trope here, and it's a problematic one.
( examples with minor spoilers )

Today is Blog against disablism day. This link takes you to a hub with many many other links.

Thank you to were_duck and jesse_the_k for calling this to my attention. Jesse has some good links and excerpts posted at her journal.

Two things I took away from WisCon last year:

1. I do identify as a disabled person. (Because I look normal, I can and usually do "pass" as non-disabled in most situations.) It was in fact a liberating step to think this way: I could stop expecting myself to be able to do everything the "normals" do; could stop feeling so frustrated and guilty over not accomplishing things that used to be easy for me. Thinking this way made it easier to change jobs and to think about accepting my own limitations. I'm aware that some people don't like the term, which leads me to #2...

2. We tend to think in binaries (disabled vs. not disabled); but the world is never that simple. Everyone has limitations that vary extensively by type and degree and also change over time. It is similar to how I already think about things like gender and sexual orientation: the binaries just don't work as a system. People are too complex to reduce to such simple terms. We categorize because it makes things simpler to understand, but categorization easily comes back and bites you in the ass.

This is a fairly new thought process for me, and I feel like I have a lot to learn, so I'm looking forward to perusing some of the above links.

Oh, P.S. I'm becoming more aware of my own stigmas regarding disabilities, and especially so concerning mental illness. I'm working on addressing that.

March 10, 2008, NY Times
Beyond Kittens, Beyond Angels
Link

By Paula Kamen

It was a typical entry in Kerrie Smyres’ blog, thedailyheadache.com, not one she would probably consider extraordinary among the dozens of other entries she has made there since 2005. But it stuck with me when I read it, as an example of the revolutionary phenomenon of online openness and sharing about chronic pain.

I’m referring to Kerrie’s Jan. 24, 2008 entry where she wrote about how her head pain that day made her cancel yet another plan she had been looking forward to — this time a cooking class with her husband at Whole Foods. It was hardly a tragedy, she admitted. But it did add to the cumulative frustration of years of missed plans. After all, such minor cancellations remind you of the bigger things you are missing. “Headaches steal so much of your life,” she had written in another entry. “The list is long, but includes jobs, relationships, having children, self-respect, ambition and identity.”
( Read more... )

Life’s Work
I’m Ill, but Who Really Needs to Know?
By LISA BELKIN
Published: February 21, 2008; NY Times (Link

ONE of the first decisions you make in the emotional hours after a scary diagnosis is whether to tell others. Most of us share the news with our loved ones, but what of the circles beyond, particularly those at work? Your boss?

At first, Richard M. Cohen, whose multiple sclerosis was diagnosed at 25, did not tell. Mr. Cohen — whose latest book, “Strong at the Broken Places,” recounts the stories of five patients with chronic illnesses — was starting what would become a hard-charging career as a television news producer when he learned of his condition. He feared he would be considered unfit. He kept his secret for years despite failing vision and shaky balance.

Marlene Kahan, in turn, disclosed her condition right away. Four years ago, when she learned she had Parkinson’s disease, she had been the executive director of the American Society of Magazine Editors for more than a decade. With that longevity came security, she hoped.

Ms. Kahan was also afraid that the mix of symptoms and side effects from the treatments would leave her at “less than 100 percent,” she said, making it seem as if she was either slacking or even sicker than she was. “I didn’t want people to wonder and jump to other conclusions,” she said.
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