Ana Mardoll's Ramblings: deconstruction (disability)

Showing posts with label deconstruction (disability). Show all posts

Storify: Stim Toys and Fidget Cubes

Storify is shutting down in May and has informed users that we have to migrate our content elsewhere if we wish to save it. This is one of my old threads.

This thread occurred the day after the AHCA vote in the US House of Representatives, hence the references to "yesterday".

"90% of the people playing with them are neurotypical." NOPE.

Oh my god. It's official, I've seen someone explaining that fidget toys are bad because neurotypical people use them to be trendy.

REMINDER: You don't know ANYTHING about another person's health or mental state by looking.

Storify: Niantic PokemonGo Ban

Storify is shutting down in May and has informed users that we have to migrate our content elsewhere if we wish to save it. This is one of my old threads.

I'm posting this for historical value, because sometimes people still email me about it.

Welp, Niantic has confirmed that I've been banned from PokemonGo. That's that, then. Sigh.

The stated reason was "use of third-party apps" which is "considered cheating". Which, you know, whatever. Fuck disabled people. I'm kinda over it. It's sad to me, though, because I liked my Pokemon and I can't say goodbye.

And I was planning to spend more money on the game. Buy official gear. That sort of thing. But wev. But definitely buy lures to place at hospitals for the GOOD disabled people. *eyes roll into the next county*

To be clear, my crime was emulating an Android environment on my computer and "walking" up to the local park when bed-bound. I didn't hop to New York or London, which I would consider cheating and worthy of at least a warning or soft ban. But Niantic permabanned me without warning for emulating a walk up to the nearest park to my house.

I can think it's a fair cop while also thinking their lack of accessibility options are shit. I sent in an appeal. I might have been terminated just for side-loading the app itself, it's hard to tell from the form letter. Kinda funny the lengths I went to in order to play their game and give them my money. Hours of effort just to INSTALL the thing.

Someone should write a "how not to piss off disabled folks with your ham-handed launch" but no one will learn from this, I wager. People will say I deserve to get banned for breaking the rules, but the same people didn't want me to complain about accessibility options. So... if disabled people shouldn't complain but we shouldn't make our own accessibility options either... what's left? Not playing?

Yes, it makes sense to exclude disabled people from all major cultural touchstone events of our generation, sure. Sometimes it's just... really hard to be excluded from fun things because your body lost the genetic lottery. I don't like to talk about downer stuff on my TL, but I do live with depression over my disability and I frequently feel... not delighted.

So it's... difficult to have a fun thing you managed to make work for you taken away because you bootstrapped a way to make it work. And the funny thing is, it would be SO EASY to make a disability accessible version. So very easy. But when people asked, major game developers came out to mock us. I'm not naming names, but they did. (I responded to one.)

Oh well. This is a farewell to the four Ponyta I inexplicably hatched and the three Clefairy I caught. May you run free, dears.

@whodreamedit: Yeah, I saw a thread about this in a group I'm in on Facebook, so it's definitely not just you. Which is awful. (Not that it wouldn't be awful were it just you. But it speaks to widespread prejudice which, ew, c'mon @NianticLabs)

Update: Motherboard interviewed me on the Niantic ban and wrote a nice article.

Storify: What is Ableist Language?

Storify is shutting down in May and has informed users that we have to migrate our content elsewhere if we wish to save it. This is one of my old threads.

Jumping from @civilwarbore's excellent thread on ableism and language, I think maybe a lot of people don't understand ableist language. This is going to be a long thread because I want to storify it, so please bear with me.

I think a lot of well-meaning people wish to be sensitive to disability issues. Good! But this is a complex topic. You cannot avoid ableism by memorizing a list of "bad words" and avoiding them, because ableism is more complicated than that.

Let us talk about what ableism is and isn't. Ableism is about dismissing, silencing, or stigmatizing disabled people. Ableist language is dismissive of disabled people and dehumanizing of us. Some examples (trigger warnings apply).

* Saying someone is "deaf to our logic" or "blind to the issues" falsely conflates disabilities with obtuseness, ignorance, cruelty.

* Saying an evil person is "crazy" or "insane" stigmatizes people with mental illness as dangerous and untrustworthy.

In these cases, people are using disability words to mean things: badness, ignorance, evilness. That is dismissive and stigmatizing. The words themselves are not necessarily bad, but you're using them wrong. Say "evil" or "inexplicable" or "unfathomable", not "crazy".

Moving on, ableist language impacts our rights. Ableism is about the legal rights denied to disabled people.

Thirty states in the USA have laws on the books barring mentally ill people from voting. There are regular proposals to block mentally ill people from gun ownership, and to keep databases on us as part of denying us gun access.

That is why there is a huge context behind calling someone "crazy" or "--tard" or "insane" or other mental illness words. You are applying a label to that person which could be used to strip them of constitutional rights. That is why it is NOT the same to call someone "foolish", "stupid", or "ignorant". Foolish people aren't denied rights in our country.

Well-meaning people have latched on to the understanding that "crazy" is bad, but they think it's bad because it's descriptive. So if "crazy" is bad, then "ignorant on this issue" must be bad! You've come to the wrong conclusion because you don't understand the root. Is the word a medical diagnosis you're foisting on someone? Is the word one used to strip people of rights? These questions matter.

Moving on, ableism is about denying us employment. Ableism is about our merit and chances of employment, and is NOT about our "right" of sexual access to others.

* Beauty standards which deny us a chance to work in various industries = ableist. We deserve a chance to work based on merit, not appearance.

* Beauty standards which deny me sexual access to Brad Pitt = not ableist. No one is owed attraction from another human being. NO ONE.

Again, people have latched onto the idea that beauty standards which exclude us are oppressive, but they follow to the wrong conclusion. Beauty standards = ableist = therefore if you won't date a specific disabled person, YOU are ableist. NO. That is bad math. That is wrong.

Beauty standards that bar us from employment are ableist because we're denied the chance to work on our own merit that everyone else has. That does NOT mean that every disabled person in the world deserves XYZ job. It means we deserve a chance at that job based on our merit. Similarly, I'm not owed attraction from any specific person in the world. I deserve only to move through this world like anyone else.

Moving on, ableism is about our freedom. Ableism is about our freedom to move in society without restraint.

Those words that deny us our rights to vote can also be used to deny us our freedom or to institutionalize us against our will. So, again (broken record) this isn't about "bad" words. This is about what those words mean. The threat beneath them. Words can be descriptive or stigmatizing, and we need to understand the difference.

What is NOT ableism is words that are simply descriptive. Let me elaborate.

* Are you using "blind" to mean someone can't see? That's probably fine. Are you using "blind" to mean they're ignorant? That's factually wrong.

* Are you using "crazy" to mean yourself who is mentally ill? That's probably fine. (More on this in a minute.) Or to mean "evil"? If you mean "evil", use "evil".

* Are you using stand to mean you are literally standing up? Great. To mean you're metaphorically standing? Fine! Are you using stand to mean someone MUST stand up with you? "If you aren't walking with Pride parade, you're NOT an ally!" That's ableism.

Do you see the difference? The problem isn't the word "stand". The problem is you're saying people MUST do this thing to meet a standard. That's why I'm annoyed by, say, an inspirational poster saying "there is no elevator to success; you must take the stairs." Because a standard is being set and people are being ordered to meet that standard without thought to whether they can.

I-language is your friend here. "I think of success as like a stairway." Cool, you do you. "And YOU have to climb it with me." No, thanks.

A caveat about triggering language. Now, caveat to all this: let's talk about "bad words" and triggers. A lot of disabled people have been marginalized throughout childhood by people throwing their disabilities in their face. Sometimes those words are triggering for them now, because of that trauma.

It is important to note that ANYTHING can be a trigger. There's a famous psych case where a fluffy bunny was a trigger. Something being a trigger does not make that word BAD or FORBIDDEN for everyone else. On Twitter, it means you have a choice: either don't use that word around the person who has it as a trigger, or you two can't interact. In the latter case, that is OKAY. There are a lot of people who have to unfollow me because I talk about heavy stuff as part of activism. In the former case ("don't use the word"), you're NOT avoiding it because the word is Bad. You're avoiding it because it's a trigger.

REPEAT: Anything can be a trigger. Being a trigger does NOT make something bad. There are several disability words that are common triggers for us because they were used so much against us. In those cases, and ESPECIALLY if you're not disabled, it's a good idea to avoid using those because the potential for harm is too great. But you need to understand that those words are triggers because of the way they were USED, not because of what they mean.

Most of us don't find "stand", "jump", "sit" triggering even if we can't perform those actions, coz we weren't traumatized with those words. You cannot extrapolate that if [word] is triggering to many of us, therefore anything a disabled person can't do is also triggering!

So to sum all this up.

Ableist language isn't about banning all the words. That's untenable, impossible, undesirable. We don't WANT that. Avoiding ableist language is about understanding:

- dismissal and silencing of disabled people
- stigma
- rights
- employment
- freedom

Sensitive language is about understanding:

- common triggers
- when to use, when to avoid, when to warn for
- the context of those words

What is NOT helpful is extrapolating wrongly over to exclude words like stand, sit, hear, jump, look, listen, talk, see, chew, etc. You must understand WHY [this word] is bad to use before you can attempt to extrapolate over to whether [that word] is bad to use.

Thank you for listening to this very long thread.

Storify: "Stand With" Hashtags and "Right Now" Activism

Storify is shutting down in May and has informed users that we have to migrate our content elsewhere if we wish to save it. This is one of my old threads.

Catching up on the #IStandForDiversity hashtag which was changed to #ISupportDiversity hashtag. Despite the change, the creator of the hashtag--a black woman--was subjected to a sea of harassment on Twitter.

Saying "stand with" is ableist ERASES THE CONTEXT OF THAT WORD in which an ACTUAL WOMAN stood up for 12 hours. Okay?

Second of all, ableism is not about whether 100% of people can do a word. For example, not 100% of people can "support" things. If you're out here saying that "take a stand" sounds like a physical, not metaphorical, thing but that "support" does NOT sound physical???? I have noodly arms and can't support a damn thing. Your hashtag is ableist against me, per your non-standard definition of ableism.

Ableism is NOT and has never been about whether you, personally, can perform a word being used. Ableism is about systems of oppression. I'm not gonna tell other people how to feel on this, but I'm weary of able allies being shouted into using a hash I find LESS inclusive. Because "stand with" has an actual history referencing a historical event. I know we don't like to remember anything before 2016, but.

Storify: Rambles on Ableism

Storify is shutting down in May and has informed users that we have to migrate our content elsewhere if we wish to save it. This is one of my old threads.

Thoughts on #DiagnoseTrump, #StandWith hashtags, Sapiosexuality, Abortion, and Other Things

I have a lot of feels about ableism this morning and unsure where to put them. I'm also struggling to organize them, and that's frustrating too. And I want to note that these are my OPINIONS, I am not Disabled Pope.

We liberals give a lot of well-intentioned lip-service to ableism but I feel like we regularly miss the forest for the trees. Let's talk about what is and isn't ableism. (IN MY OPINION, NOT DISABLED-POPE.)

Ableism is, like most *isms, systemic oppression against a marginalized community. That "systemic" is important. Words like "crazy" and "imbecile" are ableist because those words have been used by our society and government to deny our rights. IIRC, there have been state constitutions restricting "crazy" people from voting. (Citation needed, but google probably still works.) That's also why #DiagnoseTrump is ableist. He isn't a bad president for being "crazy", he's a bad president for his shitty actions.

But then you see (well meaning! entitled to their own opinion!) liberals take that farther. And say, "well, if crazy is ableist then calling someone's actions stupid or foolish is DEFINITELY ableist" and like. No? People of every level of intelligence and ability/disability are capable of doing stupid or foolish things. Really, if you think all mentally ill and/or neurodivergent people ARE foolish but you just shouldn't SAY so, that's... a problem. :/

Then you have things like beauty standards. Mainstream beauty standards are ableist. It is ableist that many disabled people are barred access from jobs requiring "prettiness". That doesn't mean that, imo, it makes sense to police INDIVIDUAL preferences, which usually can't be changed by force of will anyway. There are people who are not attracted to my body. I would argue vociferously against people deeming that "ableist". There are people who would not be attracted to my mind. I would again argue vociferously against people deeming that "ableist".

Personal preferences CAN be informed by systemic prejudice and CAN be wielded in abusive ways (fetishization, exotification, etc.) but the preference itself is not ableist (imo) even if shaped by an ableist society. Let me elaborate: It is not SYSTEMIC OPPRESSION if, say, Brad Pitt isn't attracted to me. I don't get to pick apart his reasons for independent validation.

If people want to EXAMINE their preferences and look at whether those were shaped by ableism & if they should work to dismantle them, cool! But I am bone-weary tired of people yelling "ableism!" if someone says "I find brains/legs/hands/butts sexy". Stop that, please. Understand that sapiosexuals and buttsexuals and legsexuals and handsexuals all work together to form a vibrant society. It is ridiculous to insist 100% of people be 100% attracted to 100% of everybody else. Re-examine why that seems attainable or preferred.

Moving on, let's talk about hashtags and words and meanings.

The #StandWith framing began when Wendy Davis, a woman, was forced to stand for twelve hours to block an abortion bill in Texas. It is EXTRAORDINARILY ableist that a career in the Texas Senate REQUIRES the ability to stand for 12 hours. What is NOT ableist is hashtags which referenced her heroic act by building from the momentum of that night.

I have seen many well-meaning people upset about the "stand with" framing because it's "ableist" against those who cannot stand which effectively erases the history of that term. The fact that Wendy Davis was forced to literally stand is part of the POINT. That hash is about how women and people with uteri are forced by an ableist government to jump through impossible hoops. So complaining that my tweet above uses the word "jump" and lots of people CAN'T jump... utterly misses my point and how language works.

"Lots of people can't X" isn't a bar for whether the language is ableist. The SYSTEMIC OPPRESSION part needs to be present. I need well-meaning liberals who want to trim every word out of our language (listen, hear, see, look, stand, jump, sit) to slow down. Because (a) a lot of this I see coming from people NOT with those disabilities who are enthusiastic to help and going overboard. Even things like "but people in wheelchairs CAN'T stand" like nooooo it is more complicated than that, thank you, calm your jets. And (b) You are not disabling systemic oppression by going after someone for saying "look here" (WHAT ABOUT BLIND PEOPLE WITH SCREEN READERS).

Again, this is all just my opinion, let's adjust the banner I draped over all this. Moving on to abortion.

It is systemic oppression and rampant ableist that society works to kill off disabled people among us. Parents should NOT be pressured to abort disabled fetuses as though they are "worth less" or have less valuable lives. Full stop. It is NOT "ableist" for an individual person to decide to abort on the grounds of the care they are capable of providing. I sometimes see liberals supporting abortion bans along these specific reasons and SERIOUSLY you can eat a dick if you do that. >.<

Disabled people like myself get pregnant too. Disabled people who understand what care is needed and what they can provide. Disabled people who ALSO understand how EXPENSIVE disability is and how they may not be able to provide that level of care in our society. BY ALL MEANS please dismantle the systemic oppression around us. START with the fact that hospitals don't want to respect our Revive Orders. But do not you DARE go after individual pregnant people who do the calculus and say "I can't give this child a quality life".

Seriously, if you're spending time legislating pregnant people's bodies and choices, you are HURTING already-born disabled people. And you're hurting them in favor of hypothetical disabled people for a righteousness endorphin rush. Cut that out.

OKAY, what's the next topic on my mind. How about neurodivergence. Yes. AGAIN YOUR MILEAGE MAY VARY BUT here is a thing I am weary of:

Person A: "...and that's what Schrodinger's Rapist means."

Person B: "What about neurodivergent people who can't read social cues?"

It would be systemic oppression to lock up neurodivergent people who can't read social cues as probable rapists, YES! It is NOT systemic oppression for women to feel uncomfortable around guys who talk to them on the bus. That is not ableism! Women are not obliged to go through life humoring every dude in their personal space because they MIGHT be neurodivergent!

Person A: "...and that's what man/cis/white/hetsplaining is."

Person B: "What about neurodivergent people who compulsively lecture people?"

It would be systemic oppression to strip free speech from neurodivergent people, yes! It is NOT systemic oppression for people to personally dislike and avoid compulsive 'splainers! That is not ableism! Marginalized people are not obliged to humor all 'splaining from all comers on the possibility that some people MIGHT be neurodivergent!

Human society is a complicated mesh of conflict. Sometimes person A will dislike person B for tragic reasons. I've dismissed people as friends and companions over their PERFUME or their AVATAR. Those choices aren't oppressive. You are OWED the same basic freedoms as everyone else. You are NOT owed friendship or romance or company from any specific person. Ever.

If someone is snippy at you for coming into their mentions with 'splaining, you aren't owed an independent audit of their reasons. "Ana blocked me because she didn't have her coffee so she's just an ass. Nan blocked me because she thought I was splaining so ABLEISM-" NO.

I think we understand that things can be WRONG without needing to be ILLEGAL. Similarly, something can be UNFAIR without being ABLEIST. For something to be ableist, it requires systemic oppression behind it. Someone not being your friend on social media is not oppression. They might still be unfair or an asshole or a jerk or a total douchebag! Those are DIFFERENT, and not mutally exclusive, things.

So how can you, a good liberal ally, help fight actual ableism?

1. Fight systemic oppression. Government and capitalist barriers that keep us unemployed, poor, stripped of rights, denied care.

2. THINK about your language. Don't just have a cheat-sheet of bad words. Consider "am I criticizing the ACTION or the PERSON"? Cheat-sheets of bad words is how we got to able-bodied people telling me I can't call jumping without a parachute "foolish". C'mon. Ableism isn't about "bad words". It's about what you're saying, and the history of oppression we face.

3. Be real careful before knighting in to save us from Schrodinger's Rapist explanations and #StandWith hashtags.

4. Be real REAL careful about policing individual private stuff like sexual attraction (sapios represent) and abortion.

Listen to LOTS of disabled activists and take things with a grain of salt. Everything I've said here above is in dispute. There ARE disabled people who want to legislate abortion; there ARE neurodivergent people who hate sapiosexuality. This isn't about them being wrong and me being right. It's about me exhorting you to listen and think and work out your own ideas. :)

Social justice isn't as easy as finding the loudest demagogue and doing what they want. It would be SO much easier that way. Social justice, to me, is about treating people with respect and making the world a little better through my actions. Sometimes that means disagreeing with someone's choices in a partner or to abort but supporting them because the world is complicated.

Purity purges do NOT make the world a better place and never, ever will. Let our social justice be tempered with kindness and humility. If I speak in the tongues of perfect non-ableism, but do not have love, I am only a resounding gong or a clanging cymbal. Probably.

Anyway, thank you for listening/reading/looking and I hope you all have a wonderful day.

Storify: Nintendo and Disabilities

Storify is shutting down in May and has informed users that we have to migrate our content elsewhere if we wish to save it. This is one of my old threads.

*sighs* When would be a good time to talk about Nintendo and ableism?

To start, I'm already very frustrated with Nintendo. Their treatment of Alison Rapp and Zoe Quinn has been dreadful. Please be aware. But I grew up on Nintendo. Some of my earliest memories are of playing Mario on my NES. I had a little child's trampoline. I'd jump on it while I played. I'd jump WITH Mario. This was very important to me, for some reason.

The fondest memory I have of my childhood is a lazy spring day while I played Super Mario 3 and my parents worked in the kitchen nearby. I cried my eyes out for a SNES. Y'all have never seen a kid beg so hard for so long. I mounted a goddamn CAMPAIGN to get that system. My favorite games are still Earthbound, Breath of Fire 2, Final Fantasy "3" (I'm old), Uncharted Waters 2, Mario RPG, Secret of Evermore.

I loved games. I could play them even when I was bed-ridden because of my back. I was excited about my surgery because the children's hospital I was going to had games. ONES I HADN'T PLAYED. I was barely conscious from a several hour surgery I almost didn't wake up from, but asking "where's the games? You promised." They'd wheel these televisions and SNES sets to your hospital bed and let you play. I was too weak to lift the controller. Didn't stop me. Little kid, lying there with hands in lap, IV coming out of my wrist. Playing games with my eyes half-closed from exhaustion.

Games were my escape. I couldn't leave the house some days, but I could rescue a princess. I couldn't jump rope like the other kids, but I could jump as Mario. Games gave me experiences I couldn't otherwise have. Couple years ago, I bought a Nintendo 2DS. I was super excited to play it. Cradled it to my heart. My little red baby. I turned on the 2DS and scrolled through the features. I find out there's stuff that's locked until I've walked a number of steps. 'Coz fatties.

I'm fat. I'm also disabled. I felt like ice water had been dumped over me. It hurt so much more than I can describe with words. I wanted to buy a Wii but never did because half the games aren't compatible with the retro controller. (Or weren't, last I checked.) And Wii Fit and the like just added to the overall fail of No Fatties, No Disableds. Not in their existence, but in their implementation.

Now we got Pokemon Go. *sigh*

I like Pokemon. Played several of the games. Watched the show. I could probably name more of the original set than most my age. I caught Mew in the original games a few years back. Read that you could for real do that and RUSHED to my game. MEW!! I'd LIKE to play Pokemon Go. I'd take pictures from my bed all day as needed. But I gotta go places? Oh. Yeah. That's not possible.

I guess not every game has to be disability compatible, before folks demand a hard line in the sand. But this one so easily could have been? I dunno, maybe you can catch Krabby in your bathtub as well as by the sea. I hope so. But a statement on that would be nice. [Note: You cannot!] I looked but couldn't find one. And it seems like disability accessibility shouldn't be something I have to LOOK for anyway. And I'm still super sore about the 2DS having locked content tied to a pedometer with no way to opt out of that shit. Ouch.

@ash_pana: all they'd have to do is let you change accessibility settings and move the random generator to register home and work (if applicable) as "hotspots". Or individual rooms or areas.

Yes! That would work perfectly! I can't help but feel that a lot of these ableist decisions come from this toxic mentality that games are a competition. If you let Teh Disableds catch pokemon, what will stop able-bodied people from using that setting???!!!!! But, like, who cares?

I'm old enough to remember Nintendo selling Game Cheater cartridges or whatever they were called. So you could input an invincibility code. Why do I need to pay money to input an invincibility code? If I wanna play the game to see the story, why NOT? From a purely capitalist perspective, they ought to WANT me to finish as fast as possible so I'll buy MORE games. My time is their money. From a purely capitalist perspective, spending TIME AND MONEY making the 2DS inaccessible to me COSTS them sales.

Capitalism cannot save us, because businesses make decisions based on fat hatred and disability hatred and weird toxic competition ideals.

If you can watch a Yahtzee video (huge trigger warning for EVERYTHING), he mentions it at 3:17. "The 3DS does come preinstalled with a surprisingly large amount of software, some of which it actually withholds until you've done a few laps of the block, Chunky McGee." @ the 3:30 mark in video.

But I saw NO other reviewer mention this prior to my purchase. Everyday ableism. I appreciate Yahtzee calling out an ablist "feature" that I saw no other discussion on from game reviewers at the time. Thank you and credit to him.

Storify: Chronic Pain, Disability, and Opioid Access

Storify is shutting down in May and has informed users that we have to migrate our content elsewhere if we wish to save it. This is one of my old threads.

[Content Note: Pain, Disability, Addiction, Self-Harm]

First, I'd like to talk about what chronic pain sufferers currently live with under the CDC's rules of mandatory 3-month doctor re-evaluations and 1-month prescription limits on opioid scripts.

I couldn't sleep until 2 am b/c of a plain flare up. Had to take an extra opioid. Cried because I'm trying to save them. Still have to work. Alright. I'm hurting and late for work, but I promised a rundown of how hard it currently is to get my meds.

Storify: Don't Give Suggestions to Chronic Pain Patients

Storify is shutting down in May and has informed users that we have to migrate our content elsewhere if we wish to save it. This is one of my old threads.

Don't tell chronic pain patients how to manage their pain.

Don't offer suggestions.

Don't help us.

Don't.

Yes, I know about weed. Yes, I know about acupuncture. Yes, I know about yoga. Yes, I know about meditation. Yes, I know about chiro. Yes.

I know about your aunt who does crystal bowl sound therapy. I know about the lady who tapes tarot cards to the hurty spot. I know.

I know about that thing on Amazon and that other thing on Amazon and the back brace and the neck warmer and the tube socks and I KNOW.

I know the impulse comes from the best possible place. Nothing is kinder than wanting to heal the world. But stop. STOP. S-T-O-P.

Offering suggestions for pain management to spoonies is the metaphorical equivalent of pouring a canister of salt on an open wound.

If we want suggestions, WE. WILL. ASK.

Every. Damn. Person. who urges me to use weed has NO idea that:
- it's not legal in my state.
- it's not a protected class from firing.

So they're literally urging me to lose my job and go to prison. GET FUCKED.

Not to mention the sheer breath-taking audacity to think that, while I'm over here in pain 24/7, I've never Googled pain management. This is stigma against chronic pain patients: the idea we're so "addicted" to our meds that we've never thought about alternative methods. Like a doctor gave me opioids and I just took them like a wide-eyed little lamb and never considered that Big Pharma is against the tarot lady. My medication works better than anything else available to me, so please insert your suggestions into the nearest loo.

In closing: I've used all the above methods (except weed) so miss me with claims that I don't like tarot or meditation or whatever. Tarot and meditation are lovely things I use for my own personal reasons but they DO NOT MANAGE MY PAIN and you can take my word on that, buddy.

Storify: Disability Access and Pre-Peeled Oranges

Storify is shutting down in May and has informed users that we have to migrate our content elsewhere if we wish to save it. This is one of my old threads.

Peeled Oranges in Plastic Containers: A Disability Product

[Trigger Warnings: Disability, Mention of Partner Abuse and Queer Closeting]

I'd like to talk about disability accessible items. One of the things that we need to establish up-front is that accessibility items pretty much always leave a footprint. Wheelchairs aren't biodegradable. Ramps, canes, grabbers. All of these have an environmental cost.

They also have a production cost. It costs money to produce these. Companies try to expand the sales base to recoup costs. It's at the expansion point-- which often means the difference between profit or not-- that able liberals tend to get involved. In my experience this discussion goes like this:

Step 1: "My god, such waste for lazy people!" the abled people cry. "Why can't they just [walk, peel, wrap up, shower themselves, etc.]

Step 2: A person points out that the item is accessibility product. This is met with sneers. "That's clearly not their intended audience!" the person says, oblivious to the fact that this was a disability product and is at most being expanded to a broader audience in order to recoup costs or draw in a larger demographic of disabled people (many of whom are also elderly).

Step 3: From there, the abled person might concede that accessibility is a nice "side-effect" but that the larger footprint problem is more important. The thing is, these same people aren't going after #WheresRey tags to lecture about the footprint of kids toys. They don't go after people buying plastic Funko Pop dolls. They go after accessibility products.

By continuing to pound on environmental impact for accessibility products, abled folks convey that accessibility is a step too far and costs us too much. Please don't do that? There is plenty of over-consumption for you to focus on! Believe me, you're not about to "run out". Any time you see a "so lazy!" product you want to dig at, 99.9% of the time it's an accessible item for someone. Feel free to go after adults buying novelty R2D2 robots or literally anyone else?

Disabled people get treated as a "burden" enough. It is draining, tiring, painful to continually be treated like a wrongful drain on Mother Earth because we're disabled. In addition to the drain we often feel we are on families, employers, etc. We exist. We take up space. We buy pre-peeled oranges and wear snuggies and those "ugly" plastic shoes and have grabbers to pull up our socks.

TL;DR: Every time you point a finger at a product, you're choosing NOT to point at something else that isn't a disability item. 90% of products by and for able-bodied people are out there for you to point at instead. Go with mother goddess on that

Something else I want to add: accessibility is a feminist issue in more ways than one. Many disabled people feel they have to marry because a live-in caretaker is not-negotiable for us. Many disabled people feel they must stay with an abusive partner/parent because they can't live without a caretaker. Many disabled people feel they must stay closeted about their queerness because they can't lose their caretaker.

Being able to eat an orange or open a jar might not seem much to you, but it can mean the difference between staying with abuse or not, between feeling like you can leave and still take care of yourself. Knowing you can live alone and still eat food is so important. I'm not exaggerating: my abusive [ex-]husband was angry at me when I bought a rubber jar opener. My abuser explicitly accused me of planning to leave him when I bought a jar opener for myself. He knew I was looking for ways to exist without him. So it's not enough to just say that disabled people should "get someone else to peel their oranges" for the good of Mother Earth. We are people and deserve autonomy.

I see people saying "well, they should get an employee to peel it for them!" That is literally what this is: oranges peeled by employees. Pre-register, because of sanitary reasons. Without being asked, for reasons of convenience (both to the shopper and to the employees). Wanting to force disabled people to seek out someone to peel for them "on demand" costs us time and spoons and is nothing more than puritanical punishment for being disabled.

I'm not asking you to give up environmental justice. I am asking you to aim your efforts at non-accessibility items. Especially not when we're talking about pre-chopped/peeled food.

Cherry on the end of this viral thread: my mom has mild arthritis in her hands. I told her this morning about going viral. Her first words: "Oh, gosh, are those oranges available around here?! I have to ask your father to peel them for me! That would be so much nicer." Yeah, I didn't know that. Wow. So today we learned that even people who feel comfortable with YOUR disability may not talk about their OWN. Respect.

The reason certain liberals scoff at the idea that a store would accommodate us is because they, the liberals never would. "No store would ever sell special goods to the elderly/disabled" tells me that YOU certainly never would. *shrug*

One more piece of context I think people are missing: oranges-in-boxes aren't the only food sold in plastic. Those little plastic food boxes are all over my market. They hold meat, potatoes, salsa, mac'n'cheese, etc. from the service bar. If you object to the plastic boxes themselves, I question why you started with oranges: the one product only disabled people need, rather than with the products able-bodied people also consume.

Meanwhile, I see no one going after the shelves of the exact same plastic boxes sold with mac'n'cheese. Not that I want people to go after the mac'n'cheese! Do not police food access! But my point is about the focus here. Think, please. Alright. *deep breath* Since I'm now "That Orange Girl", we might as well do this.

Oranges are sold in plastic tubs. Let's talk about the plastic we're not talking about.

Macaroni Salad. Rows and rows at your local WalMart deli.

Guacamole. Sold in tubs, often made on site.

Tofu. Plastic tubs for the plastic god.

Mashed potatoes, in dozens of flavors, all in plastic tubs.

Hummus, credit @DreddByDawn.

Salsa in a plastic tub, often made on site.

Macaroni and cheese, sold in plastic.

French onion dip in plastic, credit @lainasparetime.

Cream cheese spread, credit @lainasparetime.

Nut butters, credit @lainasparetime.

Butter and margarine spreads, credit @lainasparetime.

Fruit in plastic tubs, credit @lainasparetime.

Pulled pork in plastic tubs, credit @lainasparetime.

I could go on for ages! I need you to ask yourself: "why am I agitating for the removal/improvement of oranges and not the rest of these?" If your answer is, as I've seen some say, that disability accommodations are too much for the planet to bear, well, that's ableism. I ask that anyone giving that answer please re-examine whether there's not another way they could reduce waste w/o harming disabled folks.

To sum up: Yes, the oranges are an accessibility item. Most stores with a "deli bar" will package commonly asked-for items to save time. Once the items are already being packaged for, say, elderly customers who asked for peeled oranges, the store doesn't care whether the buyers are "legitimately disabled" or merely "lazy" (or, more likely, short of time for preparation).

A note on the actual oranges used: It's likely that the oranges being selected for peeling were ugly/bruised specimens that wouldn't have been bought anyway. Packaging them meant that they didn't get tossed in the garbage. It's actually good for the environment that these are being sold instead of trashed.

Storify: Intrusive Thoughts

Storify is shutting down in May and has informed users that we have to migrate our content elsewhere if we wish to save it. This is one of my old threads.

Let's do a thread on a thing I don't see talked about on here much: Intrusive Thoughts. A wiki link first and the standard disclaimer that I'm talking about personal experience. I'm not a doctor.

I've had intrusive thoughts for years, without knowing they were a Medical Condition. I thought I was 'crazy' or broken. Intrusive thoughts are associated with OCD, PTSD, and ADHD (and other things!), all of which I have. When I first saw someone use the term on a forum, I actually wept with relief to realize the thing I did had a name. It wasn't just me.

So how do intrusive thoughts manifest for me? Some examples.

When I'm riding in a car, I have repeated visions of rolling the window down and throwing my cellphone out onto the highway. These mental images are incredibly distressing to me, and are accompanied by a fear that the images will escalate to a compulsion. I don't want to throw my phone away! I'm terrified that I'll feel compelled to do so. The images replay over and over.

When I talk to friends, sometimes I'll be seized with images of me saying incredibly damaging things to them and ruining our friendship. They'll be talking and my brain will loop a clip of me saying something unforgivable, right then and there, destroying our relationship. At work, I'll have similar thoughts when someone talks to me, but it'll be of me saying something that would definitely get me fired.

These aren't things I want to do. They're not even reasonable fears of "I might mess up" in a vague way. They're very specific mental images of me saying (or doing) very specific things that I would never say to another human being. Variations on these images can include physical violence towards people I don't feel negative emotion towards. A face slap, a phone break. Picking up a glass of water and pouring it over someone's keyboard while they talk. Over and over and over.

The more the image plays, the more agitated and fearful I become. The more agitated I am, the more the image plays. I spent years thinking I was a danger to myself and others because of these weird thoughts. I didn't realize they were a known condition! Knowing that for the last few years has helped a lot. When I get the images, I know now they're not a compulsion for me. I still don't like them, but I don't fight them. I'm just "hello, intrusive thoughts" and then try to excuse myself to go to the bathroom.

So maybe that will help you too! Intrusive thoughts aren't your "deepest, realest desires". They're just your brain being silly at you. Books and movies kinda messed me up in that regard, making me think that deep desires manifest that way to be extracted by magic or science. But no. Intrusive thoughts aren't some meaningful glimpse at your truest, evilest form. They're just brain farts, and I'm sorry.

[TW] I should also note that intrusive thoughts can dovetail with self-harm ideation and it's sometimes hard for me to separate the two. So none of this means you can't or shouldn't reach out for help if you're seeing something scary. Help is a good thing. But it can help me to know that just because I have a repeated mental image, it doesn't mean I "want" that to happen.

Nobody knows exactly why intrusive thoughts happen, but my pet theory is that your brain is trying to help? My brain is thinking "What's the one thing I absolutely shouldn't say/do right now? This! Avoid say/doing this!" THANKS BRAIN. THANKS.

Brain: "No problem! I'll just keep replaying on a loop the thing we shouldn't do/say! For safety!"

Th-thank you, brain.

Deconstruction: Ana Watches Avatar

I don't have a Narnia this week (at least not yet) and for this I am sorry--my laptop broke last week and it's made life exponentially harder because it was what I used from bed when my back was acting up (which is "most of the time" now).

I do, however, have a live-watch of Avatar: The Last Airbender which may entertain some of you. My short review is that Season 1 was fine, if a little rushed in parts (particularly over the self-sacrifice of a girl who is miserable in her misogynistic culture--her sacrifice is covered in literally two lines of dialogue, which... just... ugh.); Season 2 was one of the best things I've ever experienced and had an amazing disabled character with hopes and dreams and challenges and a world-outlook I knew as intimately as my own; and Season 3 showed the rift of a major creator shakeup (I'm told various people left the show) and is in my personal subjective opinion ableist garbage that stabbed me deeper than I could have imagined and over which I still quietly bleed.

All of which makes the show utterly impossible to rate as a single contained unit, of course, because "best thing ever" and "worst thing ever" don't average out cleanly. People have asked whether I recommend watching it and I never know how to answer the question. "Don't watch Season 3" would mean skipping the episode in Season 3 with the old lady and I did like her. "Don't watch Season 3 except for that one episode with the old lady" would be my recommendation, I guess.

To be clear before anyone leaps in to tell me my opinion is wrong, my gripe isn't just with the ableism of the stereotypical messy-haired, disheveled-clothes, cackling-descent-into-crazy villain. Awful as that is, I'm used to that by now. No, what hurt the most was watching how the Season 3 writers just didn't care about the disabled girl Toph, to the point of actually making her established trauma into a literal punchline. That hurt me, because it wasn't just benign neglect or careless invisibility--it showed people actually understanding how and in what ways someone like me is human but then laughing at the idea that anyone would ever care because, c'mon.

Why would you care about Toph getting a resolution of her parental arc? Why would you care about her receiving closure on the letter she sent to them pleading her case one more time and asking for a reconciliation on terms that respected her as a person and not a pet? (A letter she asked for help writing because she can't write!) Why would you care that she was shuffled off the show so everyone else could have a one-on-one episode with the Brooding Angsty Boy, a fact that was lampshaded with a scene where she tries to confide in him anyway about her problems with her parents, only to be brushed off because he doesn't care. Why would you care about a disabled girl, or the latter scene in the "recap" episode where she explicitly points out that everyone else has a character arc but she's just a cannon for them to point at problems so the plot can continue. (And of course she's okay with that because, like a good Disabled Character, she's just happy to be here helping.)

I cared. I cared. And it hurt to see that care mocked and belittled.

So.

Anyway!

Enjoy the Storify if you're into that sort of thing. There are exactly 1,000 tweets, which is Storify's upper limit, I learned. I've placed an embedded Storify reader under the cut, though it might crash your web browser if you try to view it all here on Blogger. Direct link to a non-embedded view is here: Anatar.

Disability: Chronic Pain, Disability, and Opioid Access

[Content Note: Pain, Disability, Addiction, Self-Harm]

Storify below the cut.

Disability: Oranges and Disability Accessible Items

[TW: Abuse, Disability]

So, this happened yesterday. My tweets immediately went viral and I've had about 3,000 notifications (give or take) in 24-hours. I figured I'd share it here, though I don't have a lot more to say on the subject.

Storify under the cut.

Disability: A Brief Rant On The American Medical Establishment

[Content Note: Pain]

Yesterday, on a Friday, I had stomach pains so intense that I was convinced I was dying. I did something that I have never done in all my adult life: I went to the Emergency Room. (Emergency Rooms are expensive, Ana. We don't go to the Emergency Room unless it's life-threatening. Are you sure it can't wait until Monday?)

At the E.R., they agreed to give me medication to dull the pain, probably because the muffled screams and moans ripping out of my throat were disturbing the other patients. But this took about thirty minutes to occur, during which they made sure to run my credit card and insurance to make absolutely sure I could pay for the medication.

After the pain medication brought me down from a 12 to a 4, they wheeled me into a CT scan and declared that they had no idea what was wrong with me, but that it wasn't life-threatening. Just very, very painful. Ulcers, maybe. Or Irritable Bowel Syndrome. Or any number of other things. I needed to see a gastro/stomach specialist to find out.

"What about the pain?" I asked. The pain was still clearly there, under the haze of the drugs, and threatening to come back any minute. Not to worry, the E.R. doctor said -- he would prescribe a mixture of Maalox and Lidocaine (a numbing agent they use for tattoo-work) to coat my stomach. It would get me through the weekend until I could see a specialist. They sent me off with a prescription, and the medication worked.

Then I took a closer look at the bottle. "Take every 8 hours." There were four doses. I'd already taken two doses, just to get me through Friday. One in the afternoon when the drugs from the hospital wore off and one that night so that I could sleep through the pain. It was Saturday morning and the pain was coming back. I can't possibly get in to see a specialist until Tuesday at the earliest.

I called the pharmacy, which closes on Saturday at 1 and isn't open on Sundays. They needed the prescribing physician to call in the refill. I called the hospital. The prescribing physician isn't there today. I asked what the process is for calling in refills via another doctor and a nice doctor told me that the hospital "doesn't call in refills" and that if I wanted a refill I would need to come in to the E.R. for another visit.

"But I'll have to pay the E.R. co-pay again," I protested. "I can't afford that!"

"The E.R. is expensive, I'll give you that," he said, in the same tone of voice as if he was admitting that while Florida is a lovely place to live, it is humid (I'll give you that). He told me to call my primary care physician, who isn't in on Saturdays. He suggested that the weekend-on-call physician could help.

I called my weekend-on-call physician. I explained the situation to the nurse. I just need a totally-not-restrictive-nor-dangerous medication called in to last me over the weekend because I'm in terrible pain and I can't afford to go to the E.R. again. "It's the physician's practice not to issue prescriptions over the weekend," she said apologetically. I waited in agony. "I know it kind of defeats the purpose of having an on-call physician," she added with embarrassment. She told me that maybe the pharmacy would issue a refill anyway, if I promised to have my primary doctor call in the prescription retroactively on Monday.

I called the pharmacy. Of course they can't give out prescriptions without a script. The asked the name and number of the on-call physician and promised to call them. "Sometimes they'll talk to pharmacists when they won't talk to patients," she said soothingly. Trying not to get my hopes up. Hearing the tears behind my voice. Promising to call me back.

I'm still waiting for that call.

I love America. I'm proud to be an American. But I hate every aspect, every detail of the American medical establishment. Not the people who make it up, most of whom seem like nice people. But the for-profit rules and regulations which turn nice people into unfeeling paperwork zombies.

Zombies who will suggest that I spend hundreds of dollars and waste hours of the E.R. staff's time to come in for a "visit" just so I can get a refill on a prescription that is in no way dangerous or controlled and which costs $25 without insurance. Medication I could probably mix myself if I knew where to get liquid Maalox and liquid Lidocaine (neither of which are controlled substances) this time of day.

Meanwhile, I'm in the kind of pain that feels like dying feels like. But it's not life-threatening, so tough it out until Monday. Or whenever you can get someone to take your call.

Letters: Amazon Profile Pages

Dear Amazon,

I want to strongly register my opinion against the new profile pages.

As a person with a visual information processing disorder, clumps of images scattered semi-randomly over the screen is almost impossible for me to visually parse and gives me literal pain behind the eyes. The old profile is much better to process, as it has been “anchored” with words and with set, predictable places for images to appear.

Please reconsider the use of the new profile, out of consideration for your reviewers with information processing disabilities.

~ Ana Mardoll

Disability: Infertile and Happy

[Content Note: Infertility]

Two years ago, my fertility doctor delivered the crushing and wholly unexpected news that my husband and I were genetically incompatible with one another. We would never be able to have healthy children.

I was crushed. Something I had always wanted, something I had taken for granted I could have, given the right circumstances, was now forever walled off from me. And after a lifetime of being denied the things I wanted because of my scoliosis disability, this seemed like more than I could take. I remember sitting at my computer, staring straight ahead into space, and then doing that thing where you type meaningful life questions into Google on the off chance that maybe someone else has already answered all the hard questions for you.

I asked the oracle: Can I be happy without children?

Disability: An Open Plea To NetGalley

[Content Note: Ableist Narratives]

.@netgalley, I love you so. But can I say that I am a reviewer who is #disabled, i.e., neither "healthy" nor "well"? :)
— Ana Mardoll (@anamardoll) May 15, 2013

.@netgalley, So it would mean a lot to me if you used different words than "wellness challenge" to mean "up-to-date profile". :) #disabled
— Ana Mardoll (@anamardoll) May 15, 2013

"Wellness" and "Health" are not synonymous with "Complete" and "Good". Something I hope you'll take onboard. :)@netgalley #disabled
— Ana Mardoll (@anamardoll) May 15, 2013

Related Reading: The NetGalley Wellness Challenge

Disability: Pedometers and Being Oppositely-Abled

[Content Note: Chronic Pain, Weight Loss Programs]

I always hesitate to write disability posts because they always sound to me like I'm the whiniest whiner in the world. But then I remember how much mail I get in regards to my disability posts thanking me for talking about chronic pain and invisible disabilities, and I remind myself that emoting is not only a valid form of activism, but also my most comfortable mode of expression. So having said all that, I want to talk about something that has become a symbol of my disability for me lately as it progressively gets worse, and that symbol is this pedometer:

@ Amazon.com

Disability: My Body, To Love and Hate

[Content Note: Disability, Body Talk]
[Repost Note: This is a repost of an article that previously appeared on Shakesville.]

One of the fun things about having a disability is how my words are constantly policed in relation to it.

In public spaces, I'm not supposed to talk about my disability because it makes people uncomfortable to hear about all the ways in which I am disadvantaged and they are privileged. Talking about my disability can sound too much like complaining, or like I'm blaming them for not having to deal with the daily struggles that I cope with. And sharing what it's like to live with a disability can be overwhelming and upsetting, so I'm frequently expected to keep all that stuff to myself. I'm supposed to be silent on the subject.

Disability: Some Costs of Disability

[Content Note: Disability]

Wheelchair by George Hodan

Ana's Note: I chewed my lip over posting this because there's a lot of financial privilege on display here. I'm extremely lucky and privileged to come from a relatively moneyed family and (at least in 2012) to have worked at a job that pays a good yearly wage. So on the one hand, I don't want this to come off as "hey, look at my horrible privileged life!" On the other hand, I want to spotlight disability issues, and this seemed a good way to provide a monetary picture.

Last year in review, from my Amazon past purchases for 2012. Note that this doesn't include anything bought or acquired locally, such as my walker or my clothing. Nor does it include medical treatments not provided by Amazon, such as pharmacy medications, doctors visits, hospital stays, etc.

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