lizcommotion: a hand drawn/colored happy cane (disability cane happy)
I did a thing! A local activist-y thing, even!

I have been calling so many representatives lately that it has become (slightly) less terrifying and so I decided to contact my local board of representatives about a thing that has been bothering me For Awhile. Namely, that it's really unaffordable to use the local rec centers if you're on, say, disability benefits and yet while there is a very wonderful and deserving senior discount there is no discount for "disabled and poor af". (Another thing that bothers me: only one doctor has ever really acknowledged "I would love to get pool exercise, but it's too expensive" as a real thing.)

I got a response as well! Which is excite. The response was (translated from politics-speak) "huh this sounds like an idea that we would like the photo-ops and political capital from, we never thought of that. we're sending it to the correct department to see if it's in the budget and we'll blame them if we can't make it happen. but thanks for the idea!"

So, we'll see?

If you're interested in sending a similar letter to your own reps, here what I sent with space for specifics for your jurisdiction. It's US-focused since it's based on the US benefits system, but could be adapted for other countries. Places for specifics are marked with [[[parentheses]]] so you can find/replace.

text of letter for your editing pleasure )
lizcommotion: Agent Carter, in white blouse, looking determined (agent carter determined)
Conveniently, [personal profile] davidgillon made a really good post yesterday about the 2016 US Presidential election and candidates' attitudes towards disability rights/platforms/activists.

(Conveniently because I always mean to make Follow Friday posts but then forget to ask people permission, or forget what day of the week it is.)

[personal profile] davidgillon is worth following for other posts too, like about writing and SFF and disability also other activist issues of note.

Also, to combine a short and related linkspam, two articles and a storify that may be of interest (though these are non-dw):

7 ways my non-disabled friends get it right

Why disabled people write about ableism

Storify: #DisabilityTooWhite (a twitter conversation about intersections of race, disability, erasure, and white privilege)
lizcommotion: a hand drawn/colored happy cane (disability cane happy)
Things that may have caused your migraine, now or in the future or in the past or in an alternate timeline
(  that you should definitely track in a migraine journal or app )
  • hard cheese
  • dark chocolate
  • trace amounts of chocolate in another form of candy
  • sugar of any kind
  • aspartame or artificial sweetener
  • any form of food that tastes good
  • not eating
  • lack of sleep
  • too much sleep
  • sleeping at the wrong time of day
  • caffeine
  • lack of caffeine
  • high pressure systems
  • low pressure systems
  • Mercury in retrograde
  • your favorite show was cancelled
  • your OTP will never be canon because the producers are just queerbaiting you
  • someone was wrong on the internet
  • you were wrong on the internet and you can't take it back
  • post-modernism
  • capitalism/The System/insurance companies
  • stress because Pluto is no longer a planet and Pluto was your favorite
  • "good stress"
  • the cost of your migraine medication
  • the app does not have a box to let you track your period
  • deep existential questions about why migraines hurt so fucking much
  • maybe your migraines are really caused by something else, like the wrong glasses prescription
  • people telling you how to stop your migraine with yoga
  • migraine journals
lizcommotion: a silhouette of a woman with antlers/horns (horns)
Just thinking about this most excellent pain scale that [personal profile] alexseanchai linked to.

Talking about pain is weird and hard because people experience pain differently. There is no way for me to know if the blue I see is the blue you see. And there is definitely no way for me to know if your period cramps are the same as my period cramps.

lots of thoughts about pain and issues with how we talk about it, including ableism )

Probably I could fill volumes but I'll leave this here for now as an open post, and feel free to cross link in dreamwidth (but ask before tumblr etc for the moment because different type of commenter) as I think I'm not the only one who has many thoughts and a need to talk about chronic pain not just in the medical-ese of the fucking pain scale or in a list of words like "stabbing" and "throbbing" and other things that look like they could come from a sexyfuntimes fic but are not, actually, that sexyfuntimes in this case.
lizcommotion: word "Hi!" surrounded by all the hi signs from the game Glitch (glitch hi)
Today I weighed my purse because why not be mad about gender. I keep it as small as possible with as little extra change/papers/etc as possible, though I do carry a knitting bag with me or additional laptop bag if I'm going to write or something. Or bag' o' books or ereader for a long waiting room trip.

This bag is literally what sits on my shoulder when I'm out. I have tried the two-shoulder-option and also the fanny pack option, but both put pressure in different places that are also not fun. So. Here we are.

Total weight: 1 lb 5 oz (21 oz or or 595 grams)

Cell phone: 4 oz
Keys: 4 oz
Glasses, case so they don't get damaged, and sunglasses clips: 3 oz
Necessary things listed above: 11 oz, or just over half of the weight of my purse

Other things that live in my purse? Pen, lip balm, "feminine hygiene products", insurance cards, list of emergency meds, library cards, credit cards, a tiny bit of cash, metro card, a couple relevant coupons.

Sometimes emergency meds live in there, but at the moment there aren't any that are really helping except a tube of Voltaren whatnot which is messy.

Even subtracting for the weight of the purse, that's still about a pound of necessary items I'm supposed to just lug around what, in my very feminine tiny pockets somehow? Like the ones that are designed for a single locker key?

I am sick of a certain type of person complaining that I should somehow magically be able to carry everything in my non-existent pockets; or that somehow I should find men's pants that fit my curvy self and wear those for the pockets. Or that I should go on some sort of Purse Quest and find The Perfect Purse that will fit everything I need, always be organized, and not cause any pain. Or that fanny packs are the answer which they actually just put a lot of pressure on my low back.

I think the answer is clear. I think I need The Luggage. Failing any sapient pearwood, I maybe just need a service dog who -- among other very useful tasks -- can also carry maxi pads and spare change for me. I would suggest a robotic assistant, but I kind of worry about getting my period right in the middle of the AI singularity. Awkward.
lizcommotion: a hand drawn/colored happy cane (disability cane happy)
My Only Carriage: On Naming a Nameless Disability via The Toast

"I knew, in other words, that something had gone wrong in his body and he was working very hard to make his body look normal. I knew this because I was also standing with my actual knees actually locked. I knew this because I was afraid that I wouldn’t be able to stand up or still or straight."

Sick Woman Theory (long but worth the read)

"So, as I lay there, unable to march, hold up a sign, shout a slogan that would be heard, or be visible in any traditional capacity as a political being, the central question of Sick Woman Theory formed: How do you throw a brick through the window of a bank if you can’t get out of bed?"

My Disability IS My Excuse via [personal profile] umadoshi 

'There’s one kind of disabled person that the abled world really likes: The disabled athlete. The disabled athlete pushed boundaries, “overcomes disability”, and is often used as inspiration porn for the abled. “What’s your excuse?” they superimpose over a picture of an attractive young woman with a single lower leg prosthetic.'

Book recommendation : Far From the Tree: Parents, children and the search for identity by Andrew Solomon
(link is to excerpt)
Read more... )

lizcommotion: a hand drawn/colored happy cane (disability cane happy)
I spend a lot of time looking for a doctor I feel I can work with before I actually make an appointment. I am lucky in that I have a PPO in addition to Medicare, and I have the educational background that lets me know how to do all of this shit. It is a pain in the butt, no joke, and it is not always successful. I don't do all of this for every doctor, and I hope it isn't just super overwhelmoing. However, if you are stuck in WHY AM I ONLY FINDING ASSHOLES limbo, here are some of the things I try in order to find a good doctor for me:
US centric, based on what works for me and my health insurance plan etc, but putting this out there because it's taken me years to make an art out of doing this )
tl;dr I use a combo of word of mouth, finding out who's researching the thing, and double checking someone's background on the internet (aka "what's your internet resume?") I don't do all of this for every appointment; usually I do more if I've had a run of terribad experiences in a specialty or it's a super-rare thing I'm trying to find a doctor for.

(note: dw pingback to this is okay, but please ask before linking it out to the wider internets)
lizcommotion: a hand drawn/colored happy cane (disability cane happy)
My body feels roughly as crappy as it did when I did theater in high school and it was "hell week" cn: spoonie self-talk about having to cancel a thing, and also oh hai pain flare, we're gonna rest now, huh )
And all of this? All of this I carry in my head as a tape now that the brain weasels helpfully roll out every time I might have to cancel something I had scheduled. *sigh*

lizcommotion: Fandom is the universe's way of making up for family (fandom family)
I do not even know where most of this is from anymore, but I share with you becauase I found them interesting and I do so enjoy [personal profile] umadoshi's linkspam. I hope you find something of interest.

Writing

quote via this tweet: "In short, the most optimistic fiction you can write is fiction where people treat each other well under conditions of crisis." --C Doctorow

Read more... )

Gender & sexuality & feminism, oh my!

Overthinking it: Female character flowchart

Read more... )

Gaming and media

Can Live Action Role-Playing Bring about social change?

Read more... )

Various posts that I connect somehow to feeling crappy about work/not work/not the "right kind" of work

On Tumblr Skillz and their utility in the job market

Read more... )

Just for fun

The Kitty Convict Project -- IDing escaped indoor cats

the yarn harlot is giving me sock envy. good thing i am currently knitting weasley socks in autumn colors (*coughgreatlyaccidentallyalteringthepatternonpurposecough*).

(beware: gif/vine thing!) velociraptors attack outdoor christmas decorations

From the Point of View of the Cat, by Czech writer Karel ńĆapek, 1935 (note: text is in image file, transcription currently unavailable)

Comic about what the Oxfam goats think about Oxfam donations (note transcription currently unavailable

@hourlykitten If you use twitter, I've been following @hourlykitten rather than Emergency Kitten because @hourlykitten cites sources of photos and I find that admirable. (also, it's nice to be able to track back to the original photographer, etc.) I have no affiliation, but I recommend them.

There is an adorable rat on this chilled out cat's head. Not recommended at home.
lizcommotion: Pile of books (book)
I can unhesitatingly endorse Ceredwyn Alexander's Night Draws In and the associated IndieGoGo project to fund professional editing and publishing of it. (I may be also slightly self-serving, as I beta-read all but the final chapters and I really want to read the end.)

From the IndieGoGo:

Its difficult to find stories with queer or disabled characters that don't make disability or queerness the story. Or else they become a stereotype: the disabled BFF, the gay confidante. Worst of all, they may merely be a part of the hero's tragic backstory-the chronically ill or queer significant other who died and left the protagonist with a hunger for justice/vengeance or whatever.

The cast represents a more realistic view of disability and difference than is often portrayed in young adult novels. While each of the characters has some kind of disability, these disabilities are only part of them, not their defining feature.
Night Draws In is a contemporary fantasy that features characters who are more than one attribute.

Supporting this book is supporting diversity in fantasy/science fiction.


I can second this, as the changeling character's mental cognition changes that resulted from her transition from Fae to the mortal realms (plus her tendency to drift back into Faery Realm English) give her memory and aphasia-type qualities that are super duper familiar to me. I have never seen these depicted so accurately or compassionately in fiction before, and it was...really good. For me, as an adult.

Please consider donating or signal-boosting!
lizcommotion: Fandom is the universe's way of making up for family (fandom family)
I have been brainstorming with partner and some other dw folks about a potentially very cool and exciting project. Also it is one that I cannot do alone (even if I had the spoons I did in high school, which was a LOT of spoons). So I'm going to talk about the idea and then see if anyone else is interested, and what they might want to do possibly.

~Idea~

A blog-zine-website type thing a la The Toast or Autostraddle, but aimed at disability-type issues or interests. Potential posts or sections or topics could include (but are by no means limited to):cut for length )
Note: not helpful right now, anything along the lines of, "This is cool but totally unrealistic." My brain weasels can rain on the parade on their own without contributions so it would help if you did not feed them.

If there is a lot of interest I would be up for starting a dreamwidth comm about this, but would need a name.

Signal boosting appreciated

lizcommotion: a hand drawn/colored happy cane (disability cane happy)
I have short legs and a super long upper body and am overall pretty short.

This means that when I sit in chairs, my legs dangle over the edge. As a result, I tend to (when situationally appropriate) slip my shoes off and sit cross-legged. Otherwise I tend to pitch forward in my seat and it's really uncomfortable. I've tried footrests for office chairs, but they are kind of meh; don't work for "I'm out and about"; I would need them for all my chairs. As far as ottoman-type stretch your leg out things go, when my legs are stretched out in front of me and only my heel or calf is resting on the leg rest, I tend to hyperextend my knees (also a problem).

Does anyone have suggestions for dealing with short dangly legs in waiting rooms or restaurants or cafes?
Does anyone have good chair-brand or seating option suggestions for short legs (and long upper backs/lumbar support)? Or ways to "hack" existing chairs?
Any other recommended seating postures for "not breaking my body"?


Also related:
Apparently because of my ulnar neuropathy, I'm not supposed to bend/compress my elbows too much. I do okay most of the time, even though I'm a side sleeper. However, when I read books (even when I hold them in my lap supported by a pillow), it seems to flare the pain up -- which then interferes with things like using my arms for a few days. I do like books though. My tablet also can flare this issue, but more with thumb pain. Any ideas for "how to hold things I need to hold in front of me to read without losing the ability to use my arms"?
(I do prefer paper books to ereaders for a number of reasons, like cost and reading comprehension is easier with my brain fog. I just. Don't know what to do because booooks.)

lizcommotion: typewriter on a table, faded (writing)
OK, first, as someone who's a white woman, I see a lot of that aspect of my identities on TV. I see some portrayals of queer women on TV, but there's a lot of problematic stuff. Like, "And how long until one of these characters meets a horrible fate?" is basically how media has gone for a long time, or the film was made by an indie company because that is how they could get funding and so it's not terribly well made. And please don't get me started on the L-word.

OTOH...there's not that many great depictions of disability in television media? Also, usually when disability is portrayed people pick something very visible ("look this is the character who's disabled you can tell by looking at their accessibility device or some sort of visible difference") and making the Entire Fucking Storyline about the fact that they have a disability. And it's basically the ooooonly thing you know about them. And that they're inspirational and brave. *barf*

So along comes Switched at Birth, which I know I have raved about before. I am raving again. Partly because *look here are lots of intersectional identities* and *here are Deaf people arguing about disability politics and toeing the 'party line' and cochlear implants on ABC Family*. Also, they're multi-dimensional characters.

Yes, Daphne is Deaf. Her main storylines (to where I am in season 2 *don't spoil the rest I know there's more*) are about the whole switched-at-birth thing, her complex relationships with her now-blended family, class differences, "wait technically I am white but I was raised Latina til I found out about the switch so...", all the boyfriend drama, and aspirations to be a chef. Probably more things too. Like I said -- so much more than "she's the Deaf one" because there's LOTS of Deaf Characters. Also, it's a very "social model of disability" show.

Ahoy be spoilers for a couple points in the show where I felt the show did things *really well*, just so I can truly convince you to watch it. Also, links to a couple clips.

minor spoiler in season 1, I'm not sharing how this event happens it's mostly about a one to two minute clip )

spoilers for a couple plot points in season 2 with longer scenes involved )

I just.

Bring the teenage soap opera drama. Bring it all. I lurv you so much, this show.

P.S. I've been off-and-on pondering some thoughts on Daredevil and disability. This blog post has a lot of the things I had feelz about, as does this science one. I just...feel like while there's some good "here's accessible devices in action" and "here's the occasional person being a douche," Matt Murdock doesn't actually lose that much privilege via being blind-with-superpowers. That would not be such a big deal except for general lack of representation, because then Average Person gets tons of misconceptions about being blind. But there is no *one* experience for any one disability. Just, I think Matt Murdock is very outside the average range.
lizcommotion: Lily and Chance squished in a cat pile-up on top of a cat tree (buff tabby, black cat with red collar) (Default)
I am having a lot of feelz lately when I do recognize something in my health experience or queer experience in mass media represented and it's not just "oh look and inspiring story about how lazy we all are if we don't run a marathon like this kid in the special olympics" or "don't get close to these two women in love, they're about to experience a horrible fate to remind us all that queers can never be truly happy!"

/o\

A show which has been counteracting these depressing trends and giving me warm fuzzies, which I will pimp *again*, is Switched at Birth.

I won't go into the particulars of how this scene came up, because spoilerz, but:

A character with an invisible disability (Person A) who was closeted about it was talking to a Deaf character (Person B) who is strongly involved in the Deaf community. They were frustrated that someone they knew had a physical disability (Person C) that was interfering with their ability to sign, and thus have a really close form of communication (versus lip-reading).

Person A told Person B that, "[Person C] is probably a hundred times more frustrated, because it really sucks to have your body betray you."

[mic drop]

I'm sorry, I lost my shit. For several days. Someone on ABC FAMILY just spoke my truth to millions of viewers while navigating the waters of intersectionality and hiding disability and that being a legit choice and that there are different types of disability and it sucks and it's no one's *fault* and there's all kinds of adjustments and grieving that happens when you have a new diagnosis.

Excuse me while I recover from my swoon

***

At the suggestion of [personal profile] kaberett , I've been checking out endometriosis.org.

additional example, cn: ER visits, the suckage therein, validation around the suckage, feelings about how invasive medical exams can feel like assault )

***

So, does anyone have any recs for fic or books or media or whatever that will give me similar tingly feelings of "omigod other people feel this too??"

lizcommotion: an MS paint picture of someone lying in bed with rainbows outside, words read "no" (hyperbole-depression)
I miss having a meatspace community. In high school I managed to have several I would hop between, though I never quite fit into any of them. I know post-school socialing is different for a lot of people, because it's not like there are a bazillion clubs or things to choose from and many people are focused on jobs/making ends meet/romance rather than Hi I Am Also New Let's Try Being Friends!

But -- it's been so much harder since I started dealing with physical disability issues, which is when I was actually *in* college.I accidentally a memory lane; tw for friend's substance abuse and some social isolation )

Here are things that would make it so much easier for me as a person with a disability to spend time with you, whether or not you have health issues (the same as me or otherwise):
Read more... )

tl;dr. Do you want to hang with me? It comes with a side of "managing chronic pain and fatigue" and dark humor about bodies that don't cooperate the way I want them to. I might have to press the "abort" button on our plans earlier than either of us realized, and I know that is disappointed for everyone and extra work. But guess what? That means you get to press the "abort" button when you need to, no questions asked.

I still think I'm a lot of fun -- especially if we share a fandom -- and great at including people.
lizcommotion: a hand drawn/colored happy cane (disability cane happy)
Hiya! Congress is considering an incredibly wonderful (for me! as well as others) piece of legislation. It is not without faults, but basically...

Right now, because I am on Medicaid and other forms of public assistance for disability, I cannot have more than $2,000 in assets or I lose my benefits. If I get married, my spouse and I cannot have more than $3,000 in combined assets or same thing.

So, you know, all the planning for rainy days and stuff? That cannot happen for me unless I break the law and hide money under a mattress or something, which is technically a felony that could land me in jail.

This new bill would allow me to have a special savings account of up to $100,000! Other people could add to it as well! (With SSI they get really fussy about anyone else giving you money because it's considered "income" and they want to dock your benefits and it sucks.) If the money is spent on medicine or housing, it's tax-exempt. When you die, the money in the account goes back to the government.

It has passed the House because something something fiscal responsibility. It is now in the Senate, so please if you live in the US and you have some spare time could you maybe call/write/email your Senators and ask them to pass it? Also if you live outside the US signal boosting would be awesome, too.

lizcommotion: gif of Kiera Knightley saying, "La, I am Eliza Bennett!" to which Jennifer Ehle replies, "Bitch, please!" (eliza bennett)
Today after therapy we went to DSW Shoe Warehouse. This was ostensibly to look for shoes for partner, who is having trouble putting shoes on because of back pain and so needs sensible shoes with no laces or fancy buckle things. However my beloved black semi-fancy sandals are also dying (as in, I can feel rocks underneath my feet when I walk in them and it is painful) and my wonderful 2-year-old Merrell's are probably dead but also MIA. So, yes, shoes are in order.

Usually I have...issues...with shoe stores. I have non-standard feet, let's put it that way. Or at least, I used to? They seem to have shifted somewhat, perhaps due to orthotics or maybe some shoe manufacturers have finally figured out that some people have wide toes and narrow ankles. But I still have a habit of pouncing on shoes that fit and hoarding them like precious treasure, based on experiences of going to five shoe stores and trying ever frelling shoe on and none of them fitting.

The Merrell's I mentioned? They are men's, in the smallest size they make, and extra wide. I have to order them online when they are not sold out. They're my second pair and I dread the day when the manufacturer stops making them.

Earlier this year my grandmother came to visit and we went shoe shopping for her, and lo! I found a pair of shoes at Goodwill that fit me. (Purple Clark dress shoes, zomg.) And then at T. J. Maxx I also found shoes that fit (the black ones, above). So I've had much better luck lately at wearing shoes that are not hard to find and ridiculously full price.

Today at DSW I managed to find decent walking shoes that are snuggly; Merrell slip-on black dress clog thingies; and also Teva sandals on super sale markdown as it's the end of the season. ALL OF THEM FIT. WHAT. EVEN.

Taken as a whole, they are slightly out of my budget. However, when one factors in the potential spoon cost of trying to find shoes that fit all of these niches (walking, dress, sandal) again at a reasonableish price, I decided I would eat the cost and just get them all now.

I feel like a dragon atop a hoard of shoes...
lizcommotion: a hand drawn/colored happy cane (disability cane happy)
[All ganked from [personal profile] pretty_panther  because I don't have words yet this morning:]

Wheelmap.org


"Wheelmap.org is an online map to search, find and mark wheelchair-accessible places. -"
I'm so glad that this is a thing! I don't know if it is an accurate thing but I know you can add info about your own town and such. You can also mark places that are not accessible at all or only have access to certain parts of it and so on. It sounds like it has the potential to be a fabulous tool for wheelchair users. Linking because a, I'm excited and b, because a few of you might find it helpful. :)

cross-posting to [community profile] accessibility_fail 
lizcommotion: text: "If only yarn grew on trees" with a photo of trees that have been yarn bombed (covered with knitted yarn) (yarn trees)
I'm not posting it to [community profile] knitting until I'm done, but I thought I'd share what I'm working on now...

Walker Yarn-Bombing Stage 1

Image: Gray walker with a green, purple and red yarn covering on one support strut (aka "yarn bombing"). Three standard buttons hold it in place and one decorative button reads "Zounds". Note: the buttons allow the decoration to be removed and cleaned for sanitary purposes.

I'm yarn bombing my walker.

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lizcommotion: Lily and Chance squished in a cat pile-up on top of a cat tree (buff tabby, black cat with red collar) (Default)
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