Horses are good company -- The Witcher

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!

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.

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.

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 jacquelyngill.

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.

I got most of my thinking on this topic from 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.

This has been one of the more stressful few weeks of my life.

I am pretty sick. All-over achy and tired. I took two days off of work (yesterday and today) but not sure how much it helped. I'm afraid that I am under-performing at work at that shit is gonna hit the fan. Well, it won't be the first time that has happened I suppose. Being chronically ill and trying to work and survive on your own is something that there is not a lot of room or support for in society. Right now I am really longing for a different way to live.

This week on the WisCon ConCom list I got really angry, fought with people I respect, and well, made myself sick I guess.

Possibly I am not eating enough protein.

Thank you to everyone who has been supporting me in various ways. Thanks also to everyone who writes about things like:
Tone argument
Gas lighting
Microaggressions
Man-splaining
Concern Trolling
Derailment
White woman's tears
Boundaries
Victim blaming
etc
...
because I've been listening and learning.

I attended the Society for Disability Studies conference with my friends jesse_the_k and Barb, which was in Minneapolis over 4 days. My impressions were that it was highly academic, rather expensive, and quite thought-provoking. I experimented with live tweeting some sessions under their hash tag: #Sodist2014.

My impressions on accessibility at this conference:
--Nearly every panel was live-captioned via CART.
--There were many interpreters.
--Mics were in every room and were used by everyone.
--Presenters were pretty good about spelling difficult words for the captionists, elegantly describing images, and checking to make sure they were heard.
--@PriceMargaret was especially good about checking in for access: when presenting, she would say such things as: "Please do what you need to do for your own comfort in this room; such as moving chairs around, getting up to stretch, zoning out, or whatever. Also feel free to interrupt me for access needs."
--At opening ceremonies, all the aisles (both directions) were wide enough for wheelchairs to pass.
--Water bowls were available for service dogs.
--Scent-free soap was provided to registrants.
--It was great being in a place where disability is normalized.

Negative things:
--As Jesse noted, wheelchair seating could have been better. There were no designated seats in front for those who needed the captions; and no marked out boxes for wheelchairs. At the luncheon, no chairs were removed from tables for wheelchairs, and the tables were set pretty close to each other. This seemed odd. There were no marked lanes for crowd control.
--Signage was bad. It was difficult to find the bathrooms, elevators, and program rooms. There was a map in the program book, but it was buried on page 17.
--The program book was difficult for me to use/navigate.
--Many of the presentations were in an incredibly high academic register and were incomprehensible. I tried to avoid these and go to more understandable ones.
--Interesting meetings were scheduled over meal times, which is fine, except that it was difficult to find fast, cheap food. So I did not attend these meetings. Not much food was provided by the conference. We thought that probably the money for food went towards CART and interpreters instead. I am happy to pay for my own food; what I suggest is that the conference work with the hotel to provide box lunches for a fee, so that people can attend these meetings without having to use spoons to hunt down a meal.
--The hotel, hotel restaurant, and many nearby restaurants were quite pricey. I keenly missed the free food and booze that is offered at WisCon, and the nearby Noodles and other less expensive eateries. Economic accessibility matters too.

I had a really great time and learned a lot! I left my dog with a dog park friend and now she is back on the sofa with me.

My favorite presentations:
Disability in 5 objects
Disability and Shoes

:D

Occasionally I wonder if maybe I *am* the language police! Maybe I *am* too sensitive and it's not my job to tell other people how to talk or write, etc.

A few things reassure me.

One, lots of other people pay just as close attention to language and its political uses as I do, and some of these people blog about it. Some people blog about things I've never thought about, so maybe the things I notice are worth writing about.

For example:
Dave Hingsburger: Non-traditional doesn't mean unimportant.

The term I use, I insist that others use when they are speaking with me about someone they support is: non-traditional communicator. (As opposed to "non-verbal".)

Lydia Brown: Why the term 'psychopath' is racist and ableist. (Note: this post contains some upsetting language.)

Antisocial Personality Disorder, the diagnostic category that comes closest to approximating the lay definition of psychopathy, is most often a tool for criminalizing poverty, blackness and brownness, and disability. It is the diagnostic label that legitimizes non-compliance as a mental health problem.

---

Two, I find language and its uses fascinating. I will think about it anyway, so I might as well write about it.

Three, there are some phrases I use that make sense to me because not only do they seem like more accurate metaphors, they make the world a little kinder to live in.

For instance, when we speak of "lowering barriers" or obstacles, that seems kinder and easier than "overcoming obstacles". Lowering barriers is a group effort, a structural accomplishment that is done by many and benefits many. It agrees with the idea of the social model of disability. Overcoming obstacles might take teamwork, but it tends to focus on one person's drive, ambition, and success, and falls in line with the "supercrip" stereotype.

The same is true of interdependence vs. independence.

Language is subtle and it influences the way we think about ourselves and our world.

Today I read an obituary which said, despite the person's chronic disease, "he rarely missed a day of work."

As someone who has often called in sick, I'm always bothered by this common phrase; it praises people who put work before health. Not just their own health, but the health of others: coming to work while having a communicable illness puts others at risk too.

This phrase serves to enforce our place in a capitalist, production-oriented society, where work is the most important thing, and health and rest are distant followers. Workers are granted sick days, but to take them is some sort of indulgence rather than a necessary part of being a human being with a body. We also forget that sick days are something that unions have fought for.

Because I'm always sick to some degree, I often struggle with deciding whether I am sick "enough" to call in, sick "enough" to stay home and rest. Typically I will feel guilty if I call in sick, even though my body demands rest. Having a chronic illness means that I need much more rest than the average person, and something like a migraine or cold will add to my need for rest. Language valorizing people who don't call in, ever, doesn't help to alleviate my guilt.

As I saw someone say on twitter: self care is a radical political act.