sasha_feather: the back of furiosa's head (furiosa: back of head)
Getting sick, getting poor

You cut back on your work hours because you’re sick. Your income drops, but it’s worth it for the extra rest. You know you aren’t getting better; you won’t ever get better.

You cut back on expenses little by little. You already don’t much like drinking alcohol or coffee, so the articles advising you to cut back on lattes or cocktails are lost on you.

You already buy most of your clothes from the thrift store. You stop using the coin-op dryer and hang your clothes on the line to air dry. It makes your shoulder hurt but saves you a few bucks in quarters. You dilute the laundry detergent with a little bit of water.

You share your Netflix and Hulu accounts. You stop paying for internet sites that you used to throw a few bucks at when you liked their service, like Dreamwidth and Flickr. They have free versions available.

You ask your parents for money, again, knowing how fortunate you are that they can help, and that you have a good relationship with them, and that they don't hold back financial support due to your queerness.

You run up your credit card buying gas. You think about taking the bus more, but the stops and starts make you nauseous. That’s not a new thing, not a chronic illness thing. The school bus made you nauseous as a kid. But it does seem worse now.

You stop working for a while because you get laid off, and anyways you need to take a break: you’re really sick. Sicker than you want to admit to anyone, even yourself. A while becomes a longer while.

Your main entertainment is the dog park (Permit: $32 / year), Netflix ($10/month), and reading fanfic and the internet (mostly free - wireless internet $21 for your share; electric bill $16 for your share). You use the library more and more for comics and the occasional movie.

You reluctantly go on food stamps. You notice yourself eating the heel of the loaf of bread, which you used to give to the dog because it was “all crust”.

You ask your friends for help paying your medical bills and other expenses. They come through, and you think about how fortunate you are.

You feel guilty.

You learn about anti-capitalism. You feel less guilty.

You learn about the emotional costs and structural sources of poverty. You begin to feel empowered.

You read about the Mortgage Interest Deduction in the New York Times Magazine. You get angry, and anger is fuel.

You stop and get a fucking ice cream cone.
sasha_feather: Black, white, and red image of woman with futuristic helmet (Sci Fi Woman)
I have been getting more into gaming lately. It's the best thing to do when I'm especially ill because it distracts me from feeling terrible, and it's just plain fun. Naturally, I think about accessibility in gaming.

I usually play with the sound off because I'm not super into the music on games. When on my PC, I'll listen to my own music while playing. I have arthritis and some dexterity-driven games are not for me. Very stressful games aren't for me either. The games below, I played on PC and purchased through Steam.

Stardew Valley: This is a wonderful, low-key game that involves farming, fishing, mining, and scavenging, and occasionally interacting with villagers. You can play at your own pace and sound is not required. I use my mouse left-handed*, and this game is designed for a Right handed mouse. Although I found a page for switching keyboard commands, I couldn't find a way to switch the mouse buttons. I ended up leaving the mouse button commands alone and still playing Left handed, and switching the keyboard commands to accommodate my right hand being on the keyboard. Fishing is difficult and requires dexterity. However, there's a mod that makes all fishing easy. I downloaded and installed this mod with the help of some internet tutorials. I played this game a lot and it was very relaxing.

Undertale: I gave up on this game mostly because it requires high dexterity. I admit that the art wasn't really my style either.

Never Alone: I gave this a try and it was rather stressful, as it involves a lot of running away from polar bears and such. The game play is also sometimes difficult and requires dexterity, and again I was using left handed mouse which didn't seem natural for the default controls. It's very beautiful and I might try again someday, but my favorite part were the "cultural insights" (Northern indigenous people talking about their cultures) which I could probably just watch on YouTube.

*I am not technically left-handed; but I have pain in my right shoulder so made this switch years ago. These days my left hand is my "good hand".

post is to be continued as I have more games to write about!
sasha_feather: Retro-style poster of skier on pluto.   (Default)
http://velamag.com/superbabies-dont-cry/

SuperBabies Don't Cry
by Heather Kirn Lanier

"With my woo-woo belief that the mind could control the body, I’d pushed disability away. I’d done this by subscribing to the belief that disability always had an avoidable cause. I’d believed I could control the body because I could not stomach the truth: that the body is fragile, ephemeral. I had not realized this about myself. I had not realized this about my parents. I did not see our adamant devotion to vitamins and affirmations and organics as fear-based, as an attempt to control the uncontrollable. I also did not see it as political. I saw it as morally good. I was making a SuperHuman. What was wrong with that?"

Content Notes: Pregnancy, Birth, Parenting, Internalized Ableism
sasha_feather: Black, white, and red image of woman with futuristic helmet (Sci Fi Woman)
(I left this as a comment on facebook)
Thinking this through, I think these "standing wheelchairs" are less about the "health" or "independence" of disabled people, and more about making disabled people conform to non-disabled standard, to make us more acceptable to non-disabled society. If a few individuals get benefit from them, OK. But they are not part of the social justice model of disability.

Instead:
Imagine altering the built and social environments so that wheelchairs are normal. No one comments on them in hostile ways. There are ramps and elevators aplenty. Everything is reachable from wheelchair height, or if not, someone is around who can help reach, or there is assistive tech for helping with that. This would be probably cheaper than providing these "standing wheelchairs" and benefit many more people, including kids, people with fatiguing illnesses, short people, etc.
sasha_feather: white woman in space suit (Astronaut)
Seen on Tumblr, posted by chameleonchild:

"Being chronically ill and having to stay at home a lot doesn’t mean I have more free time. The chronic illness occupies that and the rest of my time."

Bit of an "aha" moment for me.
sasha_feather: Cindi Mayweather (janelle monae) (Cindi Mayweather)
Sometimes people think they have to choose between social model of disability and medical model: all one or all the other. I believe they work best in concert. Neither model explains the entirety of the experience of disease, illness, and impairment-- perhaps nothing ever will because these experiences are so complex and involve both individual and community experiences, and the many vagaries of our human bodies.

I think that all categorization and models break down with enough analysis... our human understanding of the universe is ultimately quite poor. We stumble in the dark. We stare at shadows on the wall of a cave.
But. We can try.

The social model works for me largely because medicine has failed; there seems to be little to nothing that medicine can do for my pain and fatigue. There are no medicines beyond caffiene that treat fatigue; and I've tried many many things for pain with little benefit. What helps me most are lifestyle interventions: resting a lot, essentially. Reducing my stress way, way down. Very gentle exercise. And when I read about the social model and disability activism I feel validated, comforted, more secure. I feel my world become wider. I feel a connection to others.

Trying to pursue medical interventions feels like exercise in failure. I do go to the doctor but mostly it's to make sure nothing worse is happening to me, rather than to try and get better.

I do think that most disabled people visit the doctor and believe in the medical model to an extent: we have to deal with doctors and providers to get needed medicines and therapies. We must believe in them as a matter of survival.

I'm trained as a scientist and I worked in medicine for a long time. I understand the limits and the benefits of this realm.

What I don't see enough of, is the medical field embracing-- or even knowing about-- the social model. It would be so interesting to see what could happen if practioners listened to disabled people and learned from our expertise.

When I worked in a hospital I noticed that universal design was (perhaps ironically) apparent there, because injured and ill people are normal in a hospital setting. So there is abundant signage. People are encouraged to use the elevators, and the elevators are big enough to fit wheelchairs and gurneys. There are places to sit and rest at the ends of corridors. Doctors offices, on the other hand, even my pain clinic (!) still seem comitted to using bright fluorescent lights. And of course the standards are different for staff versus patients, even though staff memebers certainly may be disabled as well.

TLDR:
--You don't have to choose between the medical and social model
--The medical world could stand to learn some things from the social model and from activists
sasha_feather: Black, white, and red image of woman with futuristic helmet (Sci Fi Woman)
Thanks to Gregg Beratan on Twitter for this idea.

Spoon Theory is useful to many people as a measure of energy and fatigue. It is difficult to wrap your head around what chronic pain, fatigue, and illness are actually like, and I say this as someone who has them. We all tend to normalize our experiences and we think that everyone around us must feel like we do-- and yet other people are somehow accomplishing more. So spoon theory is helpful in validating our fatigue and providing the phrase "out of spoons".

Yet a limitation of this theory is that it's a deficit model: It assumes that something is wrong with us, rather than something being wrong with society.

Instead of saying "I'm out of spoons," try saying "The world needs to give me more time to rest" or "Accommodations for my fatigue will help me accomplish this task."

The deficit model is the dominant narrative of illness. And it can be seductive: it feels like there is something wrong with me. But the social model of disability states that it is society that disables us-- that it is moral and normal to need more time and more support and more rest.
sasha_feather: by Such_heights (Dani Sense8)
I got waaaay over tired this weekend. In my head I should still be able to do moderately physical things. And of course the weird thing is, sometimes I still can. But I helped my friend move, and the bending/leaning over involved in packing and such was just too much. On Saturday night I slept for 13 hours. On Sunday I went back and packed the fridge and freezer. I didn't lift any heavy items.

On Monday I picked up my computer only to find it still not connecting to the internet. I was still super tired and had a meltdown.

This week has been hard. I am feeling very impaired.

Good things:

While without internet, I read several comic books. I'm really enjoying comics club.
Abbie dog is happy and silly. And healthily plump right now; she loves her new flavor of dog kibble which is lamb.
Having my internet back at least provisionally!!!!
Wool socks!
sasha_feather: white woman in space suit (Astronaut)
A friend asked me about dealing with chronic illness and fatigue, which I manage largely though scaling way way back on my commitments and resting a lot. I have some other practical tips though, which I thought I'd share. Some of these things I learned from [personal profile] jesse_the_k and other people in my life. Not all of these will be possible or relevant for everyone.

1. For light sensitivity, wear a hat with a brim. (I go almost nowhere without one.) I also sometimes wear sunglasses indoors and I use lamps rather than overhead lights in my apartment.
2. Carry chewing gum. Not great if you have TMJ, but if you have migraines/headaches, chewing gum can loosen up your stiff jaw muscles.
3. Carry food and water. When I was working I often carried granola bars, cheese sticks, apples, and chips. I also would try to have some change for the vending machine.
4. If you have trouble remembering to eat (or take meds, etc), set a timer on your phone to remind you.
5. Leave work, literally, and take breaks. Go for a walk, find a quiet room away from your desk. Find a sofa and take an actual nap (again, use the timer on your phone).
6. Stock up on ice packs and hot packs. Invest in a good electric heating pad.
7. Ask for, and accept help. (this is one of the hardest ones on here.)
8. Get grocery delivery if you can.
9. Wear comfortable shoes, and rotate them. Wear comfortable clothes in general.
10. Give yourself permission to rest. (this is also hard).
sasha_feather: the back of furiosa's head (furiosa: back of head)
I'm going to write about seeing Mia Mingus! She is so awesome, has so many great ideas, such great open energy. By culture and personality, I am somewhat conflict averse, and yet also drawn to things that involve cognitive dissonance, which is a problem. Mia has this way of being hungry for the conflict, of digging into with enthusiasm. Like, YES, let's TALK about that uncomfortable thing! And it is just honestly such a relief.

I went to a small group session where we talked about a couple of her essays from her website:
1. Changing the Framework: Disability Justice
https://leavingevidence.wordpress.com/2011/02/12/changing-the-framework-disability-justice/

2. Access Intimacy: The Missing Link
https://leavingevidence.wordpress.com/2011/05/05/access-intimacy-the-missing-link/

3. Moving Toward the Ugly: A Politic Beyond Desirability
https://leavingevidence.wordpress.com/2011/08/22/moving-toward-the-ugly-a-politic-beyond-desirability/

The third one really blew my mind. LOVED it. Here is another way of resisting respectability politics: embrace magnificence instead of prettiness. Be memorable, own the way you look and are.

We talked a bit about being uncomfortable with "body positivity", and the intersection of disability and fat politics. This is an exciting area to me and I'd like to see more people talking about it. These are both highly stigmatized categories and activists from the two groups seem to want to avoid each other due to this stigma, even though the intersection between the two groups is pretty readily apparent. Think of fat activists emphasizing "health at any size" and talking about how they are healthy and active at their weight--centering health, which is not exactly friendly to those of us who are not in good health. Meds can cause weight gain or loss; weight (high or low) itself can be associated with certain illnesses; etc. Anyways, Dave Hingsburger writes about this a bit (mostly the stigma of being a fat wheelchair user). And I always, always rec The Fat Nutritionist, especially this post: You have no obligation to be healthy.

Mia Mingus talked about how when we are so committed to the social model of disability (or any kind of social model), we can run up against the wall of our bodies. And so we need to talk about embodiment. I think part of loving and caring for our bodies is acknowledging that being embodied can totally suck sometimes. It is ok to feel negative.

During her key note, Mia Mingus talked about transformative justice and her work using it to address child sexual abuse (often adult survivors of same). She works with Bay Area Transformative Justice Collective. One of the themes of her talk was building alternatives to our state institutions, because how can we depend on the state to address violence when the state uses violence and oppression against us?

This event was part of the Gender and Women's Studies 40th anniversary event on campus. I went to some of the events the next day, but they were... much more academic and kind of not my thing.
sasha_feather: the back of furiosa's head (furiosa: back of head)
Last week [personal profile] jesse_the_k and I went out shopping to a store we like where we know a number of the staff members. Jesse took her walker rather than wheelchair, principally because it is easier for me to drive and load the walker in my car, than it is to load the wheelchair into the minivan.

One thing that happened as we were leaving the store is the staff person said to Jesse, "It's nice to see you up," as in upright, not using the wheelchair.

This is a microaggression.

First, the assumption that an acquaintance or even stranger has the right to comment on your assistive tech, on your presumed health status, on your body-- that you would even want to know what some stranger thinks. But people do this all the time and they think it's a good thing. They think it's welcome praise, that is a nice fuzzy compliment.

They think it's praise because they value being upright and walking over using a wheelchair, even though it is a value-neutral distinction. It may be better for you and your self-care to use to the wheelchair, but hardly anyone will praise you for that. You should use what will work best for you, cause you the least pain, not what society values.

They think it's praise because they think it's an improvement in health status. This demonstrates an incomplete and failed knowledge of chronic illness, mobility impairments, and assistive tech. Many people who use assistive tech use that tech occasionally or periodically, and again, it is value-neutral to do so. Diseases get worse and they get incompletely better. It happens. And sometimes you use the tech for more practical reasons that have nothing to do with your disease/impairments, but rather to do with the barriers that exist in society. Maybe walkers or walking sticks are easier in the airport than your wheelchair is, for example, even though the wheelchair is more comfortable. Maybe you don't want to risk the airport damaging or losing your expensive and valuable wheelchair. Maybe you'd use your wheelchair all the time if society didn't suck so much.

Intuition

Jul. 2nd, 2015 10:39 pm
sasha_feather: "The heroine's achivement of autonomy and self-actualization was the point of the narrative" (heroine)
I am taking a water Ai Chi class. It is in a warm water pool and the other people in the class are mostly older women. I am by far the youngest person in the class; I don't feel uncomfortable about this though. I like hanging around with older women anyways. It sort of feels like "my mom's friends" age-wise. The movements are very gentle, constantly moving. They focus on deep breathing, range of motion, and balance. It's just my speed, really, because when I've tried things like yoga, it hurts too much to do the movements. This class is challenging, more so than I expected it to be, but doesn't hurt too much. In fact the teacher encourages us not to push through pain, and it's easier to take that advice in a class like this which is aimed at people with mobility issues, than it would be in a standard class.

Sometimes--often-- my internalized ableism tells me that I should be able to do more. After all, I can walk at the dog park, do household chores, drive, etc. But when I'm in this class and focusing on my body, it tunes me in more to how much pain I have and how much I am trying to ignore it all the time. And that takes tons of energy. It's exhausting. Chronic illness reduces your stamina, plus coping with chronic illness takes work.

I have really high standards and expectations for myself, and I should remember to be easier on myself because my life is not exactly easy.
sasha_feather: Retro-style poster of skier on pluto.   (Default)
For the #KTBookChallenge*, I decided to make a public Google drive spreadsheet listing disabled authors.

Disabled Authors Spreadsheet This spreadsheet can be edited by anyone; please feel free to do so.

Some people may want to focus on reading more disabled authors for this challenge, but not know who fits into the category. Many authors may not be "out" as disabled; this spreadsheet is for those who are: those who talk or write publicly about being disabled. The column for type of disability is not there because I want to focus on that or consider it especially important: it's more because some people with a certain disability may want to read books by people like themselves. Note that many of these authors are also women and/or queer.


*KT Bradford's article at XO Jane: I Challenge to you stop reading White, Straight, Cis male authors for one year

x-posted

some links

Feb. 20th, 2015 11:22 am
sasha_feather: white woman in space suit (Astronaut)
A friend of mine had an article published in the Atlantic, exploring the "watchmaker" metaphor used by some people interested in intelligent design. A Failed Metaphor for Intelligent Design by Adam Shapiro. This information-packed article explores how the metaphor suited the British society from which it arose.

A really thoughtful, wonderful article by a woman who chose to have a double mastectomy (vs. a single). Contains some partially-nude photographs. shirts off, underwear on: play out, breast cancer and gender expectations by Melanie Testa.

Doing Science Sitting Down, and other thoughts about Universal Design by [twitter.com profile] jacquelyngill.

Tortoise

Jan. 6th, 2015 10:01 pm
sasha_feather: dog looking over a valley (dog and landscape)
What's Wrong with Me? by Meghan O'Rouke, in the New Yorker, 2013. A fantastic personal essay on having an autoimmune disease.

Lately I feel like while my peers and friends are making progress with their lives, I am barely maintaining mine. It's hard not to compare myself to other people and find myself coming up short. I'm permanently poor, my career is going nowhere, I'm chronically single, and I have no energy, etc.

It's comforting to be around animals, who are better at living in the moment. I'm meditating upon the tortoise, a cool animal that takes its time.

When I was about 18 or so, an adult friend of mine from 4-H and I were discussing shyness, and how she used to be shy. Her advice was, "give yourself ten years." It was good advice.

Give yourself time. Be the tortoise.
sasha_feather: Retro-style poster of skier on pluto.   (Sherlock glass)
I really liked The Hospital Suite by John Porcellino, a graphic memoir focusing on the author's experiences with illnesses. He has mysterious and severe gut pain, which turns out to be a tumor (non cancerous) requiring surgery. He loses a lot of weight and has trouble gaining it back. Eventually, though natural and alternative medicine, he starts to feel better physically, but then his old problems with anxiety and OCD act up, causing problems with his marriage. There are some intense descriptions in here including self-harm, thoughts of suicide, OCD symptoms, and food issues, which some readers will no doubt want to avoid or approach with caution.

I loved the no-nonsense honesty of this book. Porcellino doesn't have a lot of regard for his doctors, who misdiagnose him and don't show him much compassion. He furthers his studies with Buddhism and finds comfort in koans. Especially stark for me were panels depicting experiences of pain and mental illness, successfully using simple line drawings to show tension and pain.

What I continually admire from graphic memoirists is their ability to be so forthright about their experiences. Body, mind, soul, relationships are laid out on the page for all to see. I wonder if the simple cartoon format works as a distancing mechanism for the author.

Highly recommended.
sasha_feather: Black, white, and red image of woman with futuristic helmet (Sci Fi Woman)
I saw Guardians of the Galaxy tonight with my roommate. This was a fun movie with a lot of great effects, action sequences, and good music.
Read more... )
sasha_feather: Max from Dark Angel (Max from Dark Angel)
I got most of my thinking on this topic from [personal profile] jesse_the_k; also some folks on twitter and at conventions.

A disability exercise is a training for abled folks, where a teacher or leader encourages people to take on the trappings of disability for a short time in order to learn about what it is like to be disabled. This might take the form of tooling around in a wheelchair, wearing a blindfold or ear muffs, or some other form of what is essentially "crip face": taking on part of the identity of a disabled person without experiencing the fullness of that identity.

I highly dislike such exercises and this post is about why. First off, I don't think that they are 100% bad or wrong, and I don't think it is always wrong to play with one's identity. I have written elsewhere about how I approve of abled people helping to make assistive technology cool, as does Ben Mattlin is his Op-Ed piece, When Wheelchairs are Cool. I think there is nuance and shades of experience everywhere.

But the main thrust of disability exercises-- to think that in a short space of time that one can teach a group of people about what it's like to be disabled-- is basically wrong.

* When you first becomes disabled, and/or first start using assistive tech, you are likely to be bad at it. There is a learning curve, just like learning to dance, swim, or ride a bike. It takes a while to become competent at adjusting to your body's differences and the tech you are using. But eventually you do become competent at life. Doing a disability exercise for an hour, day, or even a few days gives you only the experience of incompetence, and likely will lead you to believe that disabled people live very hard lives-- the lives of doggie-paddle swimmers instead of practiced butterfly-swimmers.

* Many disabled folks live in a community. We have the support of friends, family, and a disabled community of our choosing. I have a chosen internet community and political identity that I value very much. I doubt that such disability exercises present or explore these identities and networks. Separated from them, again my life would be much harder than it is.

* The social justice model of disability can be shown in other ways. If disability is created in the environment, this can easily be created in an exercise to make abled people disabled. Have them, in order to get onto a stage, be required to climb up a knotted rope, for instance. As one friend said on Twitter: in order to simulate my disability, wait endlessly in a doctor's office and then be scolded for taking pain meds. This is a way of expanding our ideas about disability and accessibility: requiring to fill out complex and endless paperwork for Medicare is way of disabling people. It's a more political thought than putting a blindfold on someone and having them stumble around a room.

* Some of the supposedly abled people in any group may be disabled and not know it, or may not identify as such. Learning about the social model of disability will likely help them. The social model helps me frequently identify barriers in the environment and think about ways to lower or deconstruct such barriers (not "overcome" them, a term that focuses on personal triumph rather than community or political will).

* I do think that exploring stigma is valuable. For instance, even using a cane, for me, will get me questions from strangers and acquaintances as my disability moves from invisible to visible. People will open doors for me and treat me differently. Walking with a friend in a wheelchair (when I'm not using a cane) means that people think I am a personal carer. Observations like these are valuable.

* However, simply listening and believing disabled folks when they speak and write about their experiences is sufficient. One does not have to do a "disability exercise" which is essentially disability tourism, and can be exotifying. The same is true for listening to stories and experiences that are different than your own in any way.
sasha_feather: neat looking overcoat (coat)
Quoting [profile] firecatstef:

This "spoon shortages explained" poster is good, but I'd prefer a poster that also mentions that any of these activities could randomly develop a spoon leak.
https://www.facebook.com/photo.php?fbid=657536917659006&set=a.471348919611141.1073741826.345920125487355&type=1&fref=nf [image is below if you don't want to click]
In fact, I am going to generally ponder thinking about disability-related energy shortfalls in terms of liquid rather than discrete entities like spoons. Some liquids evaporate/freeze/boil/expand/contract at different rates depending on conditions. Some liquids interact with their containers. It's easy to spill liquids of the containers aren't handled properly. And so on.


I also liked this image "Understanding Invisible Illness", which shows an iceberg, things above the surface and those below. Taken from FB's "Chronic Illness Cat" page.

image )

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