(Optional background: my previous post and this comment to it.)

Yeah. I can be. I get angry.

I never used to. Ask my best friend. He’ll tell you. I was an appeaser. I was someone who was always sweet, always accommodating, always ready to be the mediator in a conflict, trying to reason with both sides, trying to placate the opposite party, making sure I never, ever said anything rudely, shortly, bruskly, or in any way that might put off the other party.

I still do that sometimes. When I have the time, energy and inclination.

But I don’t have time or energy anymore. Period. I have twenty things to do every day and only enough spoons for four of them. And that’s the basics: shower, prepare food, work (oh God, work), feed the cats, pay the bills, get ready for bed.

I participate in this community to varying extents at different times, depending on my time, energy and inclination. Sometimes I spend “spoons” here when I should be spending them watching hockey with my husband, or getting that extra half hour of sleep so I won’t fall over at work tomorrow. Sometimes I just have spare time and this is where I choose to spend it.

I feel like I can learn something here and also teach something here. I can do something. Make something happen. Be effective. Even if I only affect three people. Three is more than I would affect watching daytime court TV shows.

I don’t have much to spend here. I never do. What I want to be able to do is spend time researching, considering, organizing, compiling, refining, presenting. I want to be able to do more neutral-tone, resourced, annotated type posts.

I want to be able to profile the CCA. To explain what its goals are and why it is needed. To explain what is happening with it (currently, it’s dead because the current session of Congress is almost over) and what we can do to move it forward (right now, the first thing we can do is raise awareness of it so that more people can push for it because it will continue to go nowhere if the only grassroots support it has is from the likes of ADAPT).

Right now? I do not have the energy for that. Or the time. No matter how much inclination I have.

In the meantime, I watch the way things go in this community that I am a part of. And sometimes, the way things go makes me angry, as I watch it and it continues, over and over, to follow the same patterns, even as people raise their voice and point out the problems — and sometimes get shouted down for it — even as people demonstrate how it might go differently — and are summarily ignored by the people who hold the power in this community — and basically consigned to their corner, where they will continue to do the hard work they are dedicated to (and sometimes burn out because there is so much to be done and so little support) while nobody knows about it, because of a combination of a) the people with the power/audience don’t see fit to tell anyone or direct anyone their way or hell, maybe pick up and help out with some of that workload themselves? and b) the audience themselves don’t have the inclination to seek out the cornered-folks themselves, if they even have the inkling that they exist (because nobody is omniscient).

And you know what? That does make me angry.

So maybe I profile the CCA. And people who care about disability already learn about it (if they didn’t already know). And, because it isn’t “a women’s issue,” or because it doesn’t affect them directly so they don’t quite feel the same urgency, or because the culture is such that non-abled priorities are devalued so it ends up so far down the list of things to get to that it will never get gotten-to … feminist bloggers don’t say anything about it.

And … ?

So I get angry, and I wish that those bigger feminist bloggers would pick up on it, because it is a women’s issue, it does affect a great many people quite seriously, and it is something that they could make a serious difference with if they were to pick up on it, because it quite desparately needs a wider base of support.

And maybe I go the plaintive, appeasing, email-or-post-with-a-”Please-will-you-address-this?”-plea. Because that would be less offensive. (More effective? I don’t think so. I don’t think either way is more effective than the other, in the end: maybe you get people angry at you when you show anger with them, but maybe you’re also quite likely to be completely overlooked if you don’t get someone’s attention — because the whole problem is that they aren’t paying attention to you as you’re doing things the “right” way!)

Or maybe, it is an injustice that this issue ends up ignored by abled-feminist leaders, and it is legitimate to be angry about that, and it is legitimate to call them out on it.

Maybe, they didn’t know about it. That’s just how life goes. But maybe, the reason they don’t know about it is because of the systemic devaluation of non-dominant priorities. Maybe, the reason they don’t know about it is because they are continuing to — sometimes unconsciously, sometimes consciously — value their concerns over the concerns of people not like them. And passing over articles that detail issues that profoundly affect women because they don’t affect women like them. Don’t kid yourself and say that’s not why: they didn’t sit there and think to themselves while curling their moustaches, “Ha ha! These women are not like me, so they can go jump in a river for all I care! Stupak is more important!” But they just didn’t see the relevance — because our culture devalues disabled concerns!

That is what I am trying to change!

And one way to do that is to point out to people when they make those value judgments! Even in error! Even unintentionally! Because intentional or not, women are still being forced into institutions because of it!

Can I get a little angry about that sometimes?

Don’t you think it points out the root problem fairly effectively to point out that subconscious devaluation rather than just profiling the legislation at issue? Isn’t that also a valid problem to point out?

In general: when I’m short on time and energy, I’m a lot likelier to be short in response, too. I’m a lot likelier to just spit out my point rather than trying to go back, pad things with explanations of why and disclaimers about how I know you aren’t a Bad Person and reaching out my hand to hold yours through the process. Sometimes I feel like doing that. Sometimes that’s a valuable thing to do.

But it’s not always the most effective thing to do. And either way, it’s not what should be required of someone — I am a woman with a disability, remember — before they can point out that someone’s stepped on their toes.

Sometimes I’m mean.

I wish I weren’t mean as often as I am. And sometimes I slip up.

But that doesn’t mean that it’s never acceptable, or effective, to be mean. That sometimes, being mean isn’t what is merited given the situation.

I will continue to engage with this community to the extent and in the manner that I choose. If you don’t like my style, that’s OK. Not every person is required to be compatible with every other person’s style of communication. There are other people doing similar work without my sometimes-rude bent on it. I encourage you to seek them out. You are entitled to engage to the extent and in the manner you choose.

But please do not try to attack the legitimacy of this style altogether. Because it is a valid style, a sometimes effective style, and a needed style. We need all sorts of people to make this movement work. We need all sorts of tactics. We need people who are willing to kick a few people in the ass. And we need people who are willing to hold hands and guide gently. And we need people who can explain the simple facts. And we need people who can pull those facts apart and figure out what they might mean.

We’ve all got different roles. This is mine. If you are not comfortable engaging with this style, OK. Engage elsewhere. But don’t tell me to stop engaging. Because I refuse, absolutely refuse to dial back on calling people out for doing shit that is ultimately harmful.

There are some very important tasks at hand, and I’m willing to do some of the work. The work that I can do. It might not be much work, or the most effective work, but it’s what I can do, and it’s still something to help get these very important things done.

Don’t downplay the importance of that. Don’t even.

Feministe. Feministing. Shakesville. Bitch. Kate Harding, Jezebel and Broadsheet.

Every big feminist-inclined blogger who has shown such urgency and import about Stupak and abortion-within-healthcare-reform. Every feminist blogger who has used their standing, their wide audience, to urge people to do something to change this bad thing that is going to happen to people like us.

You’ve been there for all the women with functional reproductive capacity.

Where have you been for all the women stuck in nursing homes and institutions and all the women who are managing to live independently who will have their services taken back from them and be forced to move into nursing homes and modern institutions?

Because this is just as urgent an issue. And just as timely: it is being considered in the current health-care reform package. This one. This same one with Stupak (or analog). This same one you are fighting to improve for the sake of women.

Where have you been for years on the Community Choice Act?

We are talking about policy that is cheaper than subsidizing the cost of placing someone in a modern institution (nursing home, “senior living,” “care home” and the like), that allows women to have independence, autonomy, and self-determination. We are talking about a policy that gives women control over their bodies and the direction of their lives.

Just like access to affordable abortion.

We are talking about policy that lets disabled and elderly people live out in their own communities, with home services that allow them to get by on their own.

We are talking about fighting modern institutionalization, which is alive and well and still just as horrific as the stories from those old abandoned state buildings you’ve all heard about.

We are talking about saving people from being corralled, shepherded, and treated like livestock. Saving people from abusive situations, from sexual assault, from neglect and starvation.

This affects women.

Why aren’t you there with them?

Why don’t I see this addressed with nearly the same frequency or urgency? Nearly the same sense of importance, immediacy?

Because it is quite immediate to quite a lot of people. People who do not have the power you hold in our political system. (Oh, you may hold less than your male-identified young, abled, financially-privileged counterparts. But you still hold a great amount of power compared to many who are not in such a position.) People who need allies to fight with them. Let me spell that for you: N-E-E-D. They cannot see progress for as long as their younger, more abled peers continue to ignore them.

This is your chance to do something that makes an enormous difference.

If you aren’t familiar with this issue, I suggest you make yourself familiar with it. Learn about ADAPT. Read about the CCA and the arguments for it. Look into your local Independent Living center and see about opportunities for volunteering. Whether it’s high-minded political activism or low-status work doing the caring and cleaning and cooking.

Read up about disability activism, and read up about today’s institutions. Force yourself to confront reality.

And, maybe, use that platform you’ve got to share your new knowledge with others.

We need you.

I am under no obligation to interact with any given individual. Not under any particular circumstances, not to any particular degree and not in any particular manner.

It will not advance my activism to maintain the public appearance of good relations with a person who causes me nothing but pain, a person who behaves abusively toward me or others, a person who causes harm to myself or others. It does not advance a cause or better the situation of any group of people. All it does is prevent the rest of the community from feeling discomfort at being aware of conflict. But that conflict will exist no matter what: the only difference will be to my personal health. And no, I am not willing to sacrifice my personal health for others’ minor discomfort with being made aware of reality.

I am not obligated to articulate why I am avoiding this persoon or that one. I am not obligated to prove to you that my decision is justified. My reasons are my own, and they are valid. I do not need anyone else’s seal of approval to continue protecting my personal health.

Situations are complicated. And not all of the situation happens in the public eye. And sometimes, I am keeping it that way — keeping things private — for the health of the community. Sometimes, my avoidance of a person is attributable to my own personal background and triggers and issues, things that I have the right to keep to my own damn self. Sometimes, airing a personal conflict can create wider conflict with other people I care about over something that does not actually directly affect them. And I have the right to keep that to myself.

Sometimes, the conflict is a result of something that is relevant to the wider community. Something that is subject to political analysis or something that affects the concerns of the particular community. Sometimes, this conflict arises because I can see another person doing harmful things, behaving in harmful ways, and hurting other community members in the process. And I still have the right to keep that conflict to myself. I have the right to determine for my own damn self whether the actions I am capable of taking would have any positive result — or whether they might have adverse effect on my community, and how much and what kind — or whether they might have adverse effect on me, and how much and what kind — and decide for my own damn self where the balance falls and what to do as a result.

Sometimes, that means speaking up. It means rocking the boat. It means dealing with the unhappiness that results. And sometimes, it means staying silent. Keeping it to myself. And dealing privately with the pain that comes with this or that person’s continued presence and respect within the community.

Sometimes, I am avoiding someone because they whisk me back to painful times, through no fault of their own — simply due to mannerisms or patterns of behaviors which are not inherently negative, but which are just associated for me personally with negative things.

Sometimes, I am avoiding someone because they are downright abusers, even if it is not readily apparent to everyone else in the community. Abusers, you see, don’t always abuse everybody. It is quite common for abusers to be respected and revered within their wider community, considered valuable and indispensible, doing good things for other people — at the same time as they abuse one or more other people, behind closed doors, or in such a way as to slide under the radar of peers and neighbors. And their good deeds do not negate their bad ones. And I have the right to protect myself from further victimization at the hands of my own community as they come to the defense of this person they see as an upstanding and respected member being attacked without provocation (that they were aware of).

I have the right to tend to my own safety, and the safety of others who might be victims of similar abuse, or feeling similar peripheral effects of past abuse.

I have that right. No person can take that from me. Not for any reason.

This applies to people in my workplace. This applies to people in my blogging community (and yes, there are some). This applies to people in my apartment complex. This applies to people in my social circle. It applies any damn place I go. And I have just as much right to go there as the other person does.

If you respect me as a person, you must respect that right. You can keep on liking and interacting with any person you like. But realize that I have the right to abstain from interaction with those same persons. And you don’t get to question why. No matter how much you like them, it does not change the harm that comes when I force myself to pretend that nothing is wrong for the sake of other people’s illusions of harmony.

Oct 28, 2009 NOTE FOR NEW VISITORS: Please visit this post first (it’s short). Thanks.

***

[The amazing abbyjean sent me annotations. Annotations! So now: Open Letter To Feministing With Links. We proceed.]

This includes the contributors and the commentariat.

We have a problem. We have had a problem for a long, long time.

You traffick in ableism. Your entire site reeks of it. I have spoken with many disabled feminists who find it impossible to read and participate in your community. They feel excluded. The culture is thick with unexamined ableism. We encounter common slurs and problematic cultural concepts at every turn, and are met with hostility when we bring it up. Some people have wasted energy on emailing you, requesting that you address it, so that they might safely participate in the community. You never bothered to respond. To any of them.

You’ve lost a lot of readers this way. But I’m sure, because that’s the way it usually goes, you lose less readers due to ableism than you gain due to same — because you never challenge their privilege, in fact defend it, passively and actively.

That’s nice for you and all, but the rest of us would, at best, like to play too. As for the worst — we would deeply appreciate it if you would stop deliberately (and don’t you dare say otherwise, you have heard our complaints and ignored them, making your actions deliberate) reinforcing a culture which marginalizes us, leaves us vulnerable to violence (including sexual violence), ostracization, institutionalization and death.¹

I viewed enough of this happening at your site — (years ago, when I was just getting into the feminist blogosphere; disappointingly, you haven’t changed a single bit in the intervening years) — that I never even bothered trying with your site. I’d love to have been able to. But your site has never felt like a safe space for me. Ever. Exactly the opposite. Your site has felt like a hostile and scary place to myself and other women.

W-O-M-E-N.

You can read, right? Spell it with me.

You cannot claim to care about my condition as a woman if you refuse to address the discrimination I face as a disabled woman.

As far as “what issues affect women”: I am a woman. Presumably, feminists care about the oppression women face.

But you cannot address the oppression I, a woman, face, without addressing the oppression so graciously given me on the basis of my disability.

For example, I face discrimination in the workplace. But if we are only to address the male-female pay gap, and ignore the obstacles I face because I am disabled, then you are not helping me as a woman. I am still left behind, still oppressed, as a woman. All you have done is alleviated the issues which affect you. Which means you aren’t helping women; you are helping healthy, abled women exclusively.

This is the basic framework I work from in my feminism. I am not helping women if I am not also out there addressing classism, transphobia, racism, homophobia, and all of the other oppressions that women face.

The reason “Sean Bell is a feminist issue” is because you must address the oppression which killed him to be able to address the oppression of women. If you cannot address that oppression — even though it affected a man this time — you cannot help the women who are also facing that oppression.

And if feminists are ok with not helping women on that level, then feminism isn’t about helping women, it is about helping white women. (me@tumblr)

And I am sick and fucking tired of having to explain this to the likes of all of you. If you are not there to help me in the problems I face because of my disability, you are not helping me as a woman. I am a whole person, not fragmented little bits. You have to help all of me to help any of me.

And if you aren’t all-in, for helping ALL of me, you are therefore declaring that you are only interested in helping ABLED WOMEN. You can cut out this bullshit about being “feminist,” as though you are working on behalf of “women.” Because you aren’t, at that point, working on the basis of gender: you are working on the basis of women with a certain ability status. Period.

A few days ago, meloukhia at this ain’t livin’ heard us complaining, and got sick of it herself. So she posted her Open Letter to Feministing and began promoting it. And it got some attention.

Apparently, Courtney has emailed her back, as of this writing. They are “in the generalities stage.”

I have absolutely zero interest in personally emailing with any of you, but I want to make sure people know that we — disabled feminists — aren’t stupid enough to be placated with a generic private apology. And I want you to know this. What it is that I, one particular disabled feminist, want from you.

1. Just posting about ableism-in-general, while a huge step for you (considering you never engage with disability in even a token capacity), IS NOT ENOUGH.²

2. Feminists have a long history of only ever speaking the dreaded d-word when it comes to reproductive rights, particularly (almost exclusively) the right to an abortion. Yeah, I know, you thought this would be easy. THAT WILL NOT BE ENOUGH.

3. As far as I’m concerned, you are dead to the cause if you never put up a post addressing your own ableism. Not ableism-in-general. THOSE POSTS ARE STILL NECESSARY. BUT THEY ARE NOT ENOUGH TO ANSWER OUR CRIES. You must put up a post examining your own personal ableism, and particularly the ableism you deliberately condone in your comments section.

In your comments section, a few disgusting, prejudiced, DANGEROUS memes are repeated with not an ounce of pushback:

* that health can be obtained by Doing The Right Things (eating right, exercising, being upper-class privileged enough to live the perfect little high-class life that is correlated with that definition of “health”) and that if you don’t Do The Right Things, any conditions that come up are Your Own Damn Fault, Don’t Come Crying To Us For Help

* attitudes expressed that fat people, smokers, and sick people should be paying more for healthcare because their illness is dragging the abled world down

* that disability is an awful tragedy and disabled people deserve only your pity, never your respect, and who knows why disabled people are segregated away in decrepit institutions, it couldn’t be connected to the way we regard disability as the end of meaningful life as we know it, nuh uh

* that having a disabled child would be such an abomination they must be screened out at all costs, and there is nothing at all problematic with this oh no oh no (DISCLAIMER, FOR GOD’S SAKE, I DO NOT PROPOSE LIMITING WOMEN’S REPRODUCTIVE FREEDOM, BUT I DO THINK YOUR PRIVILEGED ASSES NEED TO CONSIDER YOUR COMPLICITY IN OTHER PEOPLE’S SUFFERING) ³

* that Disability Is Objectively Bad, everyone knows that, duh, who would ever want a disability, of course life is going to be worse with one, and that is just because disability is (of course) inherently awful, and could never (of course) be because we make it worse by the way we treat disability[4.
* Even more frightening, the number of women who are on antidepressants ... why the hell are they having children anyway ... fuck if you can't cope with life, how the hell does one expect to raise a child! http://www.feministing.com/archives/005359.html#comment-47387

* I do think that for the sake of society, people who's severe disability roots from their genes should be prevented from reproduction. I'm not sure what that means, and I know the slippery slope that kind of thought can lead to, but I think somehow it's the most utilitarian thing to do. Not to put a blow against the I Am Sam or anything, but I think some people really don't have the capacity to raise their kids (certainly there are plenty of non-disabled parents who fit this description), but my main concern is that the children are more likely to have those same disabilities. I think society's attitude should be to respect and accept the disabled but not to encourage its increase. Certainly we don't want to always be making decisions for people who can't make them for themselves, right? http://www.feministing.com/archives/007889.html#comment-107733]

* words like “lame” and “retard” and “cripple” and “crazy” are totally ok to use — and their conceptual meanings as well — because disability is objectively bad so it makes sense to use something objectively bad to say that something else is bad, or because no one ever uses that word that way anymore (that I hear, because I as an abled person am the ultimate arbiter of how often certain things are said to certain people, the vast majority of whom I never encounter because they are segregated away from me) and it has lost its derogatory connotation, or that I have a cousin who’s retarded and I love him to death so that means I’m allowed to use the word because that totally eliminates my abled privilege, or it’s just too much of an imposition to change my language and have to lose that one concept to express that is based on harmful prejudice, or or…[5.
LAME

* God. Jennifer's body looks soooo lame. The stupidity dripping from the trailers is so overwhelming, I can't even imagine too many dumb and sexist stereotypical males going to see it. http://www.feministing.com/archives/017815.html#comment-298306

* lame. So fucking lame. http://www.feministing.com/archives/011318.html#comment-182734

* Samhita, 11/07: “Forget immigration, reproductive rights, health care or any other issue we feminists are reading up on for the upcoming election. It is all about getting a hot chick in the white house as first lady. Does that not count potential first dude, Bill? Forget you men.style.com, you are totally lame.

In that thread, someone raises the problem, and another commenter dismisses: “It's been so long since "lame" was used for people with disabilties that I really don't think it's an issue anymore. Besids, it's used as a synonym for "loser", not "defective" (which also isn't a synonym for people with disabilities anymore).” http://www.feministing.com/archives/008086.html#comment-114144

* 1/07, Courtney headlines an article “Can I Get a L-A-M-E”. again, someone calls it out in comments but no response from mods, although mods respond to other posts. http://www.feministing.com/archives/006368.html

* “LAME. Excuse me while I barf in the corner.” http://www.feministing.com/archives/015410.html

someone calls it out in comments and response: “Please don't spread prescriptivist poppycock on any site.” http://www.feministing.com/archives/015410.html#comment-257102

* “Lame-ass beer ads are a dime a dozen.” http://www.feministing.com/archives/017741.html

RETARDED

* Victoria Beckham is so retarded, I think she almost belongs in that shopping bag. http://www.feministing.com/archives/008985.html#comment-144542

* Commenter asks “Am I retarded, or can't you reverse a tubal ligation?”http://www.feministing.com/archives/007454.html#comment-93573

response is “No, you're not retarded. There are two types of ligations…” later in thread, commenter raises, no mod response though mods active in thread.

* One commenter uses the term: “It's like when you try to control a teenager and shelter them from reality - when they go into the real world, they often rebel and make a lot of retarded decisions.” http://www.feministing.com/archives/014575.html#comment-239116,
only response is another commenter pre-ridiculing any response: “Uh-oh, you said "retarded!" Get ready to duck the flying tomatoes! :P” http://www.feministing.com/archives/014575.html#comment-239125

* “Lindsay Lohan doesn't have curves like Marilyn Monroe did so to even do this shoot was a retarded idea in the first place.” http://www.feministing.com/archives/008637.html

* “So still being able to marry but being offended by something has the same impact as two gay people not being able to marry? What are they, retarded?” http://www.feministing.com/archives/011095.html#comment-179668

CRIPPLE

* “but the idea of marriage cripples my aspirations in life.”  http://community.feministing.com/2009/07/what-to-do-when-you-want-to-ma.html#comment-282211

* “When you use satire against powerless people, as Limbaugh does, it is not only cruel, it’s profoundly vulgar. It is like kicking a cripple.” http://www.feministing.com/archives/006861.html#comment-73327

* Canadian reactions are a little different from American ones, very negative or hostile actions can really ruin you (Do not make fun of a cripple, or call someone a Kitten Eater, for instance). http://community.feministing.com/2009/04/women-prefer-polite-politician.html#comment-244108

* “I'm not sure this guy built a robot just to sexually abuse. I think he's an emotionally crippled individual who can't relate to the opposite sex.” http://www.feministing.com/archives/012670.html

CRAZY

* Jessica titles post “Fun with feminist flickr (crazy billboard edition)” http://www.feministing.com/archives/006229.html

* Vanessa titles post “Randall Terry’s Crazy Road Show” http://www.feministing.com/archives/017413.html

* Vanessa titles post “Sen. Tom Coburn's chief of staff reaches new level of crazy” http://www.feministing.com/archives/017876.html

* Jessica titles post “What Double Standards Drive you Crazy?” http://www.feministing.com/archives/007551.html

* “I would be all for the feminists for life if they weren't so schizophrenic about their positions. They won't take a position on birth control but they don't want women to have abortions.” http://www.feministing.com/archives/002804.html#comment-13883

(amandaw's note: good Lord, I can only imagine what you'd find if you searched for "insane" "loony/loonytunes/etc." "unhinged" "psycho" and so forth - again, it's not just the word that's the problem)]

* that if one person, especially a person who has a disability, says something isn’t hurtful or problematic, you can call the whole thing off, because all those other people who DO have a problem with it and have suffered the consequences of it just cease to exist, poof!

* the sense of supremacy over others because you are (choose any or none, thin, abled, upper class, pretty, educated) and fully abled, which makes you totes better than everyone else, but you never CONSCIOUSLY think that so it’s totally ok that you still avoid Those People whenever possible because they scare you or squick you out, almost like they make you uncomfortable realizing your position in life is never as certain as you like to pretend it is? — nah, couldn’t be, just because they’re weird and gross and like, different and stuff

That’s just to start.

This is all shit that goes down in your comments regularly. And it makes women (spell it with me, W-O-M-E-N) feel uncomfortable and unwelcome, especially when they speak up and have other people jump back defending the exclusionary language and concepts, stating that they don’t have a problem with it and therefore there is no problem with it, saying or implying that the challenger must be oversensitive, have an agenda, looking for things to get angry about, or just doesn’t understand that the person committing the exclusionary behavior is a Good Person and that should be good enough.

Well. It’s not good enough. You are not good enough. Your whole site is not good enough. It is going to take some major changes. You are going to have to put yourself on the line, do some serious reading, reflecting, digesting, and actually change how you think and act (and not just by saying “I believe it now!” — we aren’t stupid, we can tell when there has been a true change). You are going to have to criticize yourself and your fellow writers. And –  this is the fun part –

4. you are going to have to change your comment section. You will moderate and fight back against ableism (which you will recognize, because you have actually been making an effort to learn more than you do now, right?) from your own commenters. You will delete offensive comments and tell commenters to stay the fuck in line. And not just once. Every time. EVERY FUCKING TIME.

And don’t you dare cry that it takes up so much time. Because you’re already spending that time watching your space to protect the abled women in it.

We would love it if you would give us the same fucking courtesy.

See also: meloukhia: Open Letter to Feministing; Anna: Dear Feministing: Answer your email; Annaham: Confessions of a Reluctant Young White Feminist; Anna again: Anti-Oppression Linkspam; Chally: Feminism that doesn’t advance women is no feminism at all.

All annotations abbyjean’s except where noted in parenthesis.

After getting kicked off my low-income health insurance at age 18, going several years uninsured and uninsurable, sticking out the 24 month wait after being approved for Social Security disability payments before I could join Medicare, and then losing those payments and that Medicare because I had the temerity to get married (according to our system, my husband is not an equal partner but, because I am disabled, my expected caretaker, thus removing the burden of care from the state), I finally got a taste of the insurance all those class-privileged people have — you know, employer-based insurance (that actually is insurance and not those fake “discount plans” or “you can pay us a premium, but we don’t actually cover anything a human being might need” scam plans that low-skill employers offer to give the appearance of being socially conscious).

I am lucky that my husband is employed by the state, and represented by a strong union, so his health care benefits are good.

I was upset when I had to transition from one side of provided-by-the-state care to the other, because it was considerable work for me and for my health care providers, but over time I have come to be immensely grateful for my husband’s benefits. Rather than filling 30-day supplies of my medications at retail pharmacies and, every month, running into some hang-up or another that left me without one of my medications, or having to space out my medications, for days or weeks at a time, I now receive all but one of my medications in full 90-day supplies (including four packs of birth control pills, not three!) with no hassle. I order the medications online, and if the prescription is run out, my doctor is notified, and he sends a new one in electronically, and everything proceeds as normal. My medications arrive in the mail within days. It is the easiest it has ever been for me.

So now I am free of what was probably the biggest burden I had to bear in obtaining reliable health care. The only medication I still receive a 30-day supply for is my Vicodin, which is not considered a “maintenance medication” (despite filling the same function as my Lyrica, tramadol, Effexor, cyclobenzaprine and Mircette) and thus must be filled retail. Even that process has been considerably smoothed since the insurance switch, though not devoid of problems entirely.

And now I never have to deal with obtaining a referral for anything that wasn’t a yearly checkup with my general provider. And I have a single insurer, rather than feeling guilty every time I handed over my four insurance cards to my doctors (my retail employer’s scammy discount non-plan, my Medicare plan, the separate HMO for my MAWD and then the MAWD itself) and knowing the billing hell they were going through just to get payment for their services.

Alas, though: my troubles are not over. My husband’s insurer, like so many other employer-based insurance groups, has become enamored of these “incentive programs” that are supposed to, you know, “provice incentives” for patients to “lead a healthier lifestyle!” Mainstream conservatives and liberals alike seem to love these things. It’s a way to pretend you’re addressing the God-awful fucked-up shabby mess that is the American health care system and its soaring costs, but without actually, you know, doing anything to make these patients healthier. Actually paying for the health care they could use? Pfah! No, just “incentivize” them to exercise more or stop smoking.

These “incentive” programs, more often than not, do not take the form of an actual positive incentive for such “good” behavior. More often, patients feel the effect of a negative punishment for not being the Super Fit And Healthy Ideal Able Body. They end up paying more in health care premiums (by losing out on a “discount” for being a successful participant) or losing their health insurance altogether. Or, they simply feel the burden of having to jump through hoops no able-normative person would ever have to — the second shift for the sick.

These incentive programs would not be worth the money and effort if there were not a stick behind that carrot, a way to enforce good health on the people. It should go without saying: health is not something that should be enforced.

My husband’s ensurer has a yearly health survey that all participants — including every covered family member — must participate in to be eligible for the lower premium. This is not a five minute survey; it is fairly involved. And I am always nervous about answering questions from my health insurance provider: more often than not, when I inform them of this problem or that — even those insignificant in the grand scheme of things — it results in a loss of coverage, increased cost, or additional steps I must complete to continue receiving the care that I do.

This nervousness comes, especially, from my time spent uninsurable on the individual market due to preexisting condition. When I was younger, I created and held steadfast to a very important rule with my own family: Information Equals Ammunition. In the insurance market, this rule is sadly just as applicable.

Every year, after taking the survey, my husband is informed that he is dangerously underweight and action needs to be taken to correct this state of being. My husband is 5′9″ tall and weighs around 120lbs. This is his natural state. He eats a healthy diet, he walks to work and back every day and gets a fair amount of exercise beside that. He inherited his very lanky body frame from his mother, who is even skinnier than he, and jokes that when she was pregnant she never actually gained weight; at the end of her pregnancies, she looked just like she does now, but with a basketball contained in her tum.

When my husband played football in high school, he was actively trying to gain weight both through diet and muscle-building exercise — and he plateaued at 140lbs. Now that he is not weight-lifting on a regular basis, he hovers around 120lb. This is a BMI of 17.7, barely more than I weighed when I was a teenager — the difference being that I was significantly undernourished, and he was more-than-properly-taken-care-of.

So once a year, he gets yelled at a bit about his weight. He is healthy in literally every other way, his one and only health concern being a minor bit of TMJ pain which he now has completely under control. But he does not fit the widely-understood able-bodied “norm,” and so Something Must Be Done!

I take the same survey, and of course I am provided with tips for stress reduction and admonishment to see a pain specialist. I am now very slightly overweight, so of course I am also admonished to “park further away!” and “take the steps instead of the elevator!”

Recently, I have been receiving messages on our home phone from our insurance company, encouraging me to call them for the opportunity to participate in an unnamed program, for unnamed rewards. These messages piss me off, so I ignore them, even though I know there is a strong possibility that it might mean our premiums would go up. I planned to contact them at some point or another, but it was not high on my list of priorities, and still they kept calling every other day.

Then I received a letter, in a tone that can only be described as a lament, that I had not responded and would I please pretty please call them, this time finally informing me that it was for their “Healthy Back Program.” Oh great, I thought. And I caved in and called.

The woman who answered gave me the spiel I expected. And my reply, in a sweet voice, was (closely paraphrased): “Yes, I have chronic pain from fibromyalgia and endometriosis,” and she replied with a somewhat disappointed “Oh” — but I interrupted to continue: “I went in last year for lower back pain, and I spent the entire year going through various programs and treatments to help it. I had to go under for a laparoscopy which led to being diagnosed with endometriosis, and I’ve now been through physical therapy and even have a personal TENS unit to address the pain.”

“Well, unfortunately that means you are not eligible for our program, because your pain is chronic…”

Mm-hm. I am sure you can hear my disappointment.

This is the same health insurance company which paid for all these tests and treatments and has on record exactly what my condition is, what the background is, what medications I am on and which treatments I am partaking in. I provided this information in the health survey. It is very clear that I have chronic pain conditions. But because I even mentioned low back pain — a common focal point for people who like to cry about “overdiagnosis” and “overtreatment” — I was immediately flagged and referred to this oh-so-special program.

It’s just one more little thing I have to fend off to be able to continue on my treatment course. Just like every time I visit a new doctor, counselor or other practitioner and have to patiently go over every disclaimer about why I am on this Vicodin and why I have this symptom and why this and why that, and that yes I am being closely monitored by competent doctors and am following my treatment course as prescribed would you please leave me the fuck alone so we can get on with things.

And it’s exhausting, always having to be at-the-ready to explain these things. It’s just exhausting in a way that no able-normative person will ever fully understand, period, and I am confident in asserting this. It just drains you, even though each of these encounters is small and relatively easy when considered individually. But it accumulates, it weighs on you, and the knowledge that you always have more to come — that is the worst of it.

This is what people with disabilities go through in a health-obsessed culture, a culture that sees personal health as a responsibility to the collective, and any person who in any way deviates from the designated health “norm” (which changes regularly and is not as science-and-reason-based as these people like to think) is failing their family, community and nation, that they are dragging them down — being a burden.

And we all know what the result is when disability, or any health abnormality, is constructed as a burden.

In the run-up to Game Seven of the Stanley Cup Finals tonight, I have posted my photos from Game Six, Tuesday night (June 9th) at Mellon Arena.

I was in the midst of an awful whole-body migraine at the time, and ended up taking more painkillers than is technically safe to be able to attend the game. But this is the kind of thing that happens once in a lifetime, and it is one thing I firmly decided when I was a teenager in high school facing the choice between completing assignments or attending this or that social event (Prom and Grad Nite, mainly): there are times where I will sacrifice my physical wellbeing for the sake of participating in something that is important to me. I will not let my disability keep me from doing something fun, just because it is “fun” and therefore not allowed for the chronically ill (who face pressure to never, ever do anything that takes any sort of energy which is in any small way enjoyable to them — because then they are failing in their responsibilities to everyone else in the world, and seen as transgressing the dominant narrative of disability as a tragedy, something to somberly nod to one another about).

This doesn’t mean I abandon all responsibility and throw myself into every trivial thing that comes along. It means that I already have to sit out most events because of my disability, and I already have to put a disproportionate amount of energy into the basics of life, and I can’t let myself fall into that rut of always doing the more Serious and Important thing because that’s what I’m supposed to do, so yes, sometimes, I will say “fuck it,” bear the consequences, and go do that Really Fun Thing I was wanting to do, because I should not be denied participation in these things — sport games, concerts, art festivals, dinners out, parties, etc. — or shamed for daring to participate in them, just because I am disabled.

Anyway, pictures. I managed to get picturesof both Pittsburgh goals, as well as that crazy insane shift at the end of the game where Rob Scuderi stepped in front of the net and did some stand-in goaltending for the waylaid Marc-Andre Fleury. Enjoy.

The entire set

Me with Iceburgh, the Pittsburgh Penguins mascot (as posted previously here):

Inside Mellon Arena just before the game began:

Lauredhel brought to my attention a very important change in policy that Australia is looking to implement, redefining who has access to handicapped parking spaces. The background, and what you can do to help (if you’re in AU, PLEASE do; if not, if you know anyone in AU, PLEASE ask them to) is here, here, here, here and here.

Cara posted about it at Feministe. And we do love Cara, but the thread there (and at Hoyden About Town) quickly devolved into fail, several directions of fail in fact. I just want to walk you guys a little further in one of those directions with me.

Candace left the following comment:

As a PWD, just know that I agree with almost all of what you’ve said, Lillith. I’ve seen sooo many instances of abuse, most often of people carrying their many shopping bags out of the huge mall and then pulling out of their accessible parking space.

I understand why it is so viscerally frustrating to watch seemingly able-bodied people act totally able-bodied while also visibly taking advantage of privileges meant for disabled people. I think everybody gets that, on a deep level. But this feeling comes from many places within us, and uncomfortable though it may be to admit, most are rooted in internalized ableism.

Coldneedles responded:

I have chronic fatigue syndrome. I don’t currently need accessible parking, but I can imagine it in the future because I’ve been declining quite rapidly. I could then very well be your so called “abuser” of the system.

Want to know why?

Well, if I live by myself I will need to go shopping at some point. To do frivilous things like buying food and clothing. I will calculate that I will suffer more if I don’t carry heavy bags. because then I will need to come back and use my precious energy on more driving, walking and even getting presentable so I can go out. Once I get back from the mall I will collapse into bed and not be able to do anything for the rest on the day, possibly even the next two will be affected.

But you wouldn’t see that. Neither would you see the things I have to do to make sure I can go- resting before hand, taking medication, taking rest breaks in the mall itself.

Would it be better if I was denied an accessible parking space, merely because I can technically carry heavy bags? Even if that meant I could not go to the mall to supply my basic needs? Even if that meant public places were inaccesible to me?

Coldneedles, you are not the only one.

Before I moved out here to Pennsylvania, I spent a year living on my own in southern California, attending Cal State Fullerton in Orange County. Ultimately, that didn’t work out for me, but I put up a good fight before bowing out.

I spent my first six weeks in the dorms before being kicked out, because they provided no priority access to housing for students with disabilities or distant students (CSUF was four hours from my hometown of Visalia), with 800 bedspaces for a school of over 38,000 at the time. And then I moved to an apartment about five miles away, in Orange. I began school that year in June, and was without a car until the end of September, leaving me dependent on the public transportation system. In Orange County, that meant the buses. I’ve written about the experience before, here.

So to get food, I had to use the buses. The nearest bus stops were about a mile away from my apartment either way. Then it was a short ride down the street — about a mile — to the nearest grocery store. Then, the walk around the grocery store, and then making my way back to the bus stop — through the bus ride — and the walk back to my apartment from there — now carrying all those groceries.

My disability is, and was, invisible. I managed to make those trips for those first few months. I wouldn’t've made it as long as I did if I didn’t eventually get that car, though.

I had to make a calculation, every time: 1) how much can I reasonably carry? and 2) how often can I make this trip?

If I carried less, that made the trip easier. But it meant I was going to have to make that trip again much sooner, and overall more often. Which would end up dragging down my physical health much further. But there was a limit on how much I still could carry. And if I tried to overstuff my tired arms to keep from returning too soon, it made my condition considerably worse in the short-term and only marginally better in the long-term.

This also meant I had to buy many more processed and boxed foods, because I couldn’t get too much that could be outside the refrigerator or freezer for more than the hour or so it took me to get home (between bus connections and the walks), and because I only had so much energy to prepare food for myself when I was devoting all this energy just to buying the food and getting it home. And, of course, that meant poorer nutrition, which didn’t help my physical state much either.

It was a calculation I was destined to lose, pretty much.

So yes, you might have seen me — a tall, slim, healthy-looking 20-year-old woman with no visible deformities who walks upright with a normal gait — carrying bags of groceries and walking a considerable distance with them, including up the flight of stairs to my second-story apartment. That doesn’t mean I wasn’t disabled.

You also didn’t see me slump those bags to the floor at the doorway, with only just enough care to keep them out of the door’s way so I could slam it shut as I slumped my tired body to the floor/couch/bed, and resting a few minutes before putting away what had to be kept cold but leaving the rest for several hours later, when I had rested more and finally recovered enough to get up and move around again.

This is a calculation I go through every single day of my life. How much work do I take on, and how do I pace it?

Take today. The cats’ litter box desperately needs changed, but I don’t have any litter left. And I need new tights for a job interview tomorrow morning. So I had to go out. And I went to Wal-Mart. Because Wal-Mart had both tights and kitty litter. And it wasn’t going to do workers any better for me to drive to PetSmart and then to JC Penney or Kohls, the two choice’s I’d've had otherwise, than to get those things at Wal-Mart. So I went to fucking Wal-Mart.

And when I got there, I took a normal parking spot. And it was a fucking mistake. I do my best not to use my disabled placard unless I know that I absolutely need it, because there are never enough spaces, and I don’t know who else might come along who might need that proximity parking more than I do, and I feel guilty about it. Plus I like to avoid the glares from people when they see that young slim white chick step out of her bright red two-door with a sun roof and a spoiler on the back (which was the best car available to us in a hurry when I totaled our old beige sedan a year and a half ago) with that blue disabled placard hung from the rear view. The less I deal with that shit, the better.

So I parked about fifteen spots farther away than I would’ve parked with the disabled placard. And I got out of my car and walked in the door. And there were no carts.

I laughed about it with the couple right in front of me. They picked up a basket. I didn’t bother, because the litter wasn’t going to fit in it.

I could have walked all the way to the other end of the store to get a cart, or gone exploring the parking lot for a stray one. But that was a lot of walking I honestly did not feel I could do — so I decided I’d just get the cat litter last so I didn’t have to carry it around the store. And that was going to be a serious physical burden on me. But it was the least physical burdensome option I had available to me right then.

So I walked over to the “intimates” section in the middle of the store and grabbed a box of pantyhose, then trekked back to the side of the store I started at.

I also need some new hair stuff (which is as much a matter of comfort as it is of looks). And I know my husband hates sitting there while I look over all the different stuff that’s available and compare ingredients and compare prices and so forth. It can take me a little while. So I figured, because the hair-stuff aisle was right next to the cat-litter aisle, I would use this time to do my comparison shopping. No one else was in the aisle when I walked around the corner, and I kneeled down where the stuff I wanted to look at was, and started looking.

At that point, a middle-aged woman pushing a somewhat older woman in a wheelchair came in. And behind her, another woman pushing another woman in a wheelchair. The second said “excuse me” and I looked up, ready to straighten and move out of the way, but it turned out she was merely teasing the first couple of women, whom they apparently knew.

The assistant women (so to speak) strolled the older women down the aisle, asking “Do you prefer any certain brand?” and picking one thing up to show them, and so on. And it made me grateful that, at least for now, I can do that sort of comparison-shopping without having to ask someone else to fetch the things for me — because I know myself, and I know I’d feel too guilty and “prideful” asking for something like that. Those are the sort of situations where I throw my hands in the air and deal without — whether it’s something Really Important that is actually going to affect me quite negatively, or whether it’s looking for new hair-stuff, or whether it’s trying on clothes so I can look the way *I* want to — because that little voice in the back of my head starts repeating, “burden”… and I don’t feel like I have a right to any of those things, the minute someone else has to do anything for me to have it.

And I couldn’t help but feel guilty, in the middle of this conversation: I, the slim young girl, standing there between two boomer-age women in wheelchairs, trying my best to give them space and not get in their way — and I just wanted so much to be known as disabled, too.

I was finished perusing, for the most part, so I rounded the corner back to the cat litter and grabbed the small box — which costs me more money, but I can’t handle the giant pail, even if my husband carries it in and out for me, because it’s too heavy to lift and pour from when I’m actually doing the box. But the “small” box was still 21lbs.

And as I shoved the pantyhose under my left arm, and picked up the box of cat litter and started walking, the first couple of ladies also rounded the corner. And I had to say “excuse me” because we almost ran into each other.

And oh God: having just wanted to connect to these two women, to be recognized as disabled, too — here I am carrying a very heavy box of cat litter in my arms, without a cart or anything, right in front of them. And I thought: if I had made any mention of my disability before, what would they be thinking of me? Right now, it was just “able-bodied young girl.” But if I had, would it now be, “Faker“? “Abuser“? “Oh my God, I can’t believe she has the nerve to claim to be disabled, there she is carrying an awkwardly shaped twenty pound box with no assistance, just look at her“?

Me, a few days ago on a “good day” with my hair done and dressed up, and then today, with my hair pulled back in the first shirt and pants I picked up.

I made a beeline for the checkout lines, trying to maneuver between crowds of people without having to stop or stray too far from my path. And there was only one express checkout line open on this side of the store, and there were four people waiting in that line and nowhere to set this box down. So I went to the nearest regular line, where I could set the litter box down on the belt behind two women’s cartfulls of groceries, and stand there longer than I’d objectively have been standing in the checkout line — but without somewhere to set this box down. (Lifting from the ground is simply not feasible for me, period.)

These are the sorts of little tradeoffs people with chronic illness make all the time. I was so flushed and in so much pain at this point, standing there for five minutes longer actually hurt me considerably. But it was less hurt than I’d've sustained the other way.

So I waited, then it was my turn, and when the cashier didn’t give any indication of an intent to move the litter from the belt to the bagging area, I laughed lightly and said “Yeah, leave that there. I just couldn’t stand in the express lane holding this, I needed to set it down. There were no carts when I came in…”

Why did I feel like I had to justify myself?

So I swiped the credit card, put the bag with the pantyhose in it over my arm, took a breath and hefted the box up to my chest again. And I made a straight line toward the exit. And now, there were eight or so carts in the cart area. So I plopped my purchases down in the cart, to take out to my car. Which was about five times as far a walk (from store entrance to car) than if I’d have used that disabled spot…

And when I got to my car, of course, guess what was waiting there for me?

So: I was a seemingly healthy twenty-three-year-old who drove herself to the store, picked up that twenty pound box and carried it to the checkout line and then out the door. Can you imagine what people would say if they saw me carry that box straight to my blue-line parking spot?

I am a disabled woman. Just because you don’t see it doesn’t mean it isn’t there.

It was a last-minute decision Friday night. My husband snagged two tickets to the Penguins-Capitals games at Verizon Center in Washington, DC and the next morning we started the five hour drive.

It was a great experience — I love the DC area and I was excited to go back. But five hours in a car makes for stiff muscles, and I was already dealing with some endo flareup. So I was dealing with spasms and pain even with my TENS on (here’s the trick: if you have a big bag, security doesn’t bother patting you down when you enter) and more painkillers than I should have taken.

We had nosebleed seats but whatever, they were seats. It was a great game, even though we lost. It’s hard not to enjoy an NHL playoff game. Especially being able to whisper at each other about the clueless fans behind us who had several amusing misconceptions about how the game is played. (It’s fairly doubtful that the linesmen are biased in calling off-sides. It’s one of the most objective and least arguable calls there is. But “they only ever seem to see ours!”)

Throughout the game, the people behind us kept tapping my shoulder and yelling at me for leaning forward. They “couldn’t see.” Of course, everyone else in the section was leaning forward, and I couldn’t see without doing it too. But most of all, my back was killing me, and doubling over stretches the muscles in a way that helps relieve some pain. (Ask mattw — I sleep in the same damn position.) I tried sitting back for part of the second period but couldn’t last.

After a few times of them tapping me, toward the end of the game, I turned around when they tapped again and stuttered, loudly, wide-eyed and annoyed, “I have a disability — in — back in a lot of pain –”

and they sneered and threw up their hands at me. So I turned back around.

I was steaming inside. I complained to mattw on our way out when the game was over, noting that my TENS was turned up all the way and I’d already taken way too much medicine. And when we reached the bottom of one escalator, the couple behind me tapped my shoulder and the middle-aged bearded guy said, with a smile, “They meant it nicely.”

There are several things going on here. We were wearing Penguins shirts at a Capitals game, and there’s a budding rivalry there. It’s a playoff game, and there’s the whole MVP debate going on (Malkin vs. Ovechkin), so of course it’s contentious. I severely doubt they would have bothered me if I’d been wearing red & blue rather than black & gold. So I understand it. All in good fun, in that respect. A little rivalry can make the sport more fun.

It’s a national sports game, though. At a huge arena. Some people pay attention to the game. Those people might lean left, right, forward, backward, so on. And as long as they aren’t standing up all the time, or wearing a very tall hat or something, that’s accepted, and you work around it. You lean one way or the other to get a better view. People move around as the puck moves around the ice to see better. You move too. And when things are really tense, they probably scoot closer to the edge of their seat and lean forward. So you do the same. And at the very end of the game, people often stand up. Which means you stand up too. IOW, it’s a rather ridiculous thing to complain about, no less multiple times, and angrily (not politely).

Finally, their reaction mattered. When I spilled out why I kept leaning forward, they didn’t do what I expected — look away awkwardly and quiet down as though nothing was ever said. I’m used to that. But instead, they kept gesturing and yelling at me.

That’s what’s so frustrating. It’s not respected at all. Or only respected for so long as it has to be — when you have any reason no matter how trivial to discount that person’s experience or opinion, respect goes out the window. People with disabilities are “protected” in this society only insofar as they are nonthreatening. And that protection is paternalism at its extreme. But that’s a separate issue. When they aren’t subjects of protection, they are objects of harassment.

It isn’t the worst case of harassment I’ve had related to my disabilities, but it bothered me.

Oooooh boy, Dove, you have no idea what you’re getting into here, do you?

The subcontext here is incredible. Jess uses a wheelchair. She’s happy and perky and having fun. Katie is visibly healthy. She has low self-esteem and her self-hatred keeps her from even being able to greet Jess when she comes to the door. Instead, she slouches to the ground in despair.

There is a reason they put Jess in a wheelchair. In doing this, Dove sets up a contrast: the physically disabled girl who feels good enough about herself to go about her life; the able-bodied girl who hates herself so much she can’t even go out with the people least likely to judge her at all.

The only way this contrast is meaningful is if it rests on the assumption that the physically disabled girl has reason to think less of herself.

Dove, here, is deliberately driving home the message: It’s such a shame that the “normal” girl thinks less of herself than does the girl in a wheelchair!

The shame conveyed here is that each girl does not recognize her true place in the social order. The normal-bodied girl is pretty, but can’t see her prettiness in the mirror. The girl in the wheelchair does feel good about herself. This is out of order, backwards. The girl in the wheelchair should be the one who sees herself one step lower; the normal-bodied girl should recognize her innate goodness in being able-bodied and conventionally attractive.

The dissonance Dove deliberately draws here relies on the recognition that Jess is diminished by her disability, but Katie is so dragged down by her poor self-esteem that she ends up in an even lower place than Jess. This is not right! This is not how things should be!

How should they be, then?

Of course, the commercial is also contemptible for the simple reason that it uses the girl in the wheelchair as an object to develop the human character of the able-bodied girl. In this setup, Jess is not a character; she is a tool. We don’t see Jess’ character explored, developed, reflected upon. She is introduced for only one reason: to act as a foil to Katie. To demonstrate just how low Katie has sunk.

Because you know it’s a fucking shame when she falls even lower than the cripple.

DIsability, here, is set up as an awful tragedy, the lowest a person can sink in life. This is what the title communicates. Disability is a reason to be sad, upset, mournful, pitied. This is what Dove purports to save young women from — a life of suffering. This is the reason Katie is to be pitied: she has fallen into the state Jess should be in.

Finally, the issue of appropriation. I’ll make it simple. Never, ever, ever, ever appropriate another group’s cause. White folk, you are simply not allowed to flip a situation to make it on a black person to try to communicate how outrageous it should be. Abled folk, you are simply not allowed to purport yourself disabled to communicate how tragic something against you is. Period. (The comparisons are slightly different in effect and implication, but my point applies to both.)

This assumes that to be disabled (black, gay, female, etc.) should always be understood to be a bad thing. It assumes that discrimination against disabled/etc. folk, or other forms of oppresion against them, are always taken seriously. And the subtext in these comparisons just screams out: How dare *I* be treated like those people!

Like it or not, whether you were thinking it or not, when you use these tropes, you imply that wrongs against you are worse than wrongs against the other group, that people should be outraged that you have been lowered to their level. What you are protesting, like it or not, is that your privilege over them has been violated.

Seriously, there is never a good reason to use the comparison trope. So just don’t do it. Ever. Period. End of story.

Via Wheelchair Dancer

In honor of 4:20; fashionably late.

It is a given that, when there is cause to mention my fibromyalgia to anyone who did not formerly know of it, there is a high probability that a person will “helpfully” “suggest” some miracle treatment they’ve heard about, or know someone who knows someone who’s tried, etc. Honestly, you get all kinds of suggestions, from warm water pool therapy to probiotics to eliminating aspartame from your diet to … yes, my friends, pot.

Marijuana has been shown to have analgesic properties, you know! There’s no way a chronic pain patient has ever heard of that before! (Honestly, I think  these sorts of pot evangelists latch on to the idea of someone they know who might need pot for a medical purpose! because it legitimizes their own use in their minds. But that’s not what I wanted to write about.) Anyway…

I’ve never smoked pot. Or tobacco. Not one sip of alcohol has ever passed my lips. I’ve never tried any of the recreational drugs that are so popular on college campuses.

Make no mistake: I take drugs. Oh, do I ever! But I take them by necessity. I do not take them for fun. I would rather not have to swallow 14 pills/day (minimum) to be able to function on a basic level. Honestly, I hate taking most of them. A couple of them, fortunately, offer significant benefit with no downside beside the price tag. But others have unpleasant side effects and addictive properties. I have a long-time love/hate relationship with Vicodin in particular (pros: allows me to get out of my bed/chair and do things; cons: digestive issues, artificial mood high/”manic” phases, problems with focusing and retaining information, problems relaxing, probability of developing a tolerance a.k.a. dependence*). While there are incredible benefits in taking these drugs, there are also considerable downsides that can’t be ignored.

So the last fucking thing I want to do? Is take more drugs. For the hell of it. I take more than enough medication that I fucking hate taking, for reasons too varied to fit in one blog post. I have a fucking awful relationship with taking medicine. Me and taking medicine don’t get along, yo. I don’t think about it on a daily basis, but it’s sitting there under the surface every time I pop those pills in my mouth. I don’t think it’s something any fully healthy person can ever understand that inner conflict. And y’all know I will stand up to anyone who tries to judge me for taking this shit. I would not be where I am in life right now if I did not have all these drugs to rely on. But that doesn’t mean I’m totally ok with taking them.

That means I have zero interest in taking any drugs for any reason other than it will help me do more than I can do right now. (And even then, I’m not terribly excited about it.) Especially when those drugs could have serious and potentially fatal interactions with the drugs I’m already taking.

This is not a judgment on anyone who does use those drugs: the social drinker, the recreational marijuana user, even the beleaguered cigarette smoker. There are real downsides to every drug, but that does not erase that they can be enjoyable and beneficial for folks who use them responsibly. And this is yet another time to emphasize that a person can, in fact, hold two ideas in one’s head at the same time: I can vehemently reject recreational drugs for myself while being perfectly content with my friends smoking a bowl or heading out for a drink. I make no judgment, moral, character or otherwise, on recreational users. The only judgment I make is on my life and my needs.

Here is the thing about these “suggestions”: they’re not just unhelpful; they’re insulting. They rest on the assumption that there’s no way I could have a basic understanding of my own body, that there’s no way I’ve ever heard of this treatment before, that there’s no way I could have tried it already, that there’s no way it could be a bad choice for me individually for any of a million different reasons. This is not what’s running through a person’s mind as they make this suggestion, but if that person stopped to think for half a second, and reflected on these assumptions, they would most likely decide against making the suggestion. Because there is no way that a person could recognize my individual humanity — recognize that I have my own individual body which has its own ways of working and its own needs and its own history — and still make that suggestion.

Consider, for example, my family background, which is a major factor in my decision to stay far away from pot and alcohol. My three siblings were a generation older than I, old enough to have children who were the same age as me. (My oldest brother is in his 50s. I’m 23.) My sister lived sixteen hours away in northern Oregon; my two brothers lived in town, and I spent a good amount of time with them (including several years actually living in their respective homes as one brother was going through jail).

My entire immediate family is mentally ill. Both brothers have been diagnosed with schizophrenia with psychotic episodes. My mother fits every criterion for borderline personality disorder, though she has never seen a mental health professional in her life, and the suggestion that she might need to would be met with accusations of a conspiracy to run her out of town. (This is not an embellishment; it was a regular pattern throughout my childhood.) One brother and my sister have bipolar disorder. And all four (my mother, sister and two brothers) suffer clinical depression and anxiety to varying degrees. My sister is the only one to seek any treatment, and even then only intermittently.

And I’m sure you can guess where this is going.

My brothers drank. Casually, throughout the day, totaling at least a six-pack each on a normal day, for awhile. It went up and down throughout my childhood, and once in awhile one brother or t’other would swear off the stuff, declare himself clean, but be back to it a month later. And yeah, you know, anyone drinks that level, they’re going to get drunk. But my brothers didn’t just “get drunk.” They got… well… crazy. The worst incidents I can remember as a kid always involved alcohol. Severe paranoia, apparent hallucinations, imagining things that didn’t fit in reality at all. Psychotic episodes. Several times, they were targeted at me, as young as six and continuing into early adulthood. I was never physically assaulted, fortunately, but I can’t exactly say I was unaffected.

Given my experiences as a child, suffice to say, I don’t want anyfuckingthing to do with alcohol.

And, of course, marijuana can exacerbate schizophrenia. (Please, please take note of the word exacerbate, not create, and don’t lecture me in comments.) Um, severely.

And I am keenly aware of my relation to these four people — immediate relation — and the severity of their conditions. (It waxes and wanes, over the years, as any condition does, but it is quite severe during the bad times.) And I am also keenly aware of the tendency of these two drugs to tap into a predisposition to these conditions. And, though I seem to be ok so far (getting away with “mere” anxiety disorder), I’m not going to make the mistake of assuming I’d be any different. Schizophrenia, in particular, tends to lie dormant in women until their twenties and early thirties. And I have to live with that hanging over my head (and my husband’s) for some time yet.

Given all that, do I want anything to do with pot? Well. No.

Do you think any of that flashed through the mind of my eager acquaintance when they decided that all I might need is a small toke? I don’t think so.

That’s my individual story. I’m one person. I don’t know what the hell is going on in the life of the next chronic pain patient you might meet. That’s the point. You just don’t know. You don’t have the slightest concept of what their background is or how their body works or what they’ve tried before. So why do you assume it’s totally benign to throw this in their face? Why are you acting as though you know their body, their history, their experiences better than they do?

Do I have the time to detail everything above every time somone “helpfully” informs me that marijuana can be good for pain relief? Should I have to reveal all this stuff to total strangers, or even acquaintances, coworkers, casual friends? Even if all this stuff wasn’t there, and I just didn’t feel like using it: why can’t I have that decision respected?

Drugs are not, and never will be, an enjoyable experience for me. They are a necessary… well, not evil, but certainly not altogether positive. Either way, they are a necessity for me to be able to live the life I want to live: to be able to do the normal things most people take for granted. You know what doesn’t feel like a nice, relaxing escape for me? Yeah, I’ll let you answer that for yourself.

Bottom line: Respect every person’s sovereignty, every person’s ultimate control over their own life. We’d all appreciate it.

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* Repeat after me: De-pen-dence. Not “addiction.” Physiologically, the two can be identical. But a person is addicted when they have no need for the drug; they are dependent when there is a need for the drug for medical reasons.

The specter of “addiction” is weilded against pain patients — acute and chronic — and make no mistake: anyone who speaks threateningly of “addiction,” when you are in real pain, doesn’t have the faintest understanding of the interesctions between substance abuse and chronic/acute pain treatment. Dependence is a real issue in pain patients, and as such, they must be monitored closely by a medical professional who knows wth they’re taking about. But the possibility of dependence does not automatically exclude controlled substances from the list of possible treatments. It is one of many issues which must be handled with care and nuance; the possibility of dependence should inform the decision, not make it. Each individual patient will have to make decisions with hir MP based on all the factors in play, including what type of pain (which can change which drugs are in play), how severe, how long it is expected to last, the patient’s physical and mental condition(s), interactions with other drugs, how certain drugs have worked (or not) on the patient in the past, and so forth. Anyone who automatically skips that conversation to get into scare tactics and character insinuations about addiction is not worth the trees that were killed to make fancy sealed papers hanging on their office wall.

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Addendum: This post took me a good four days to complete. It’s a very deeply personal subject to me. It is definitely scattered, definitely defensive in tone. But I don’t feel I have the energy to rework it to be more coherent without also destroying the heart of it. I meant to get across the insult and violation of privacy I feel when someone lobs the pot “suggestion” at me, to continue exploring how these “suggestions” affect people with disabilities and chronic illness, to make clear why no, not all things are good for all people, and that right to refuse, that sovereignty, must be respected. I do feel I must add that intellectually, I know that there is nothing “wrong” with taking prescription (or any) drugs, but unfortunately it’s not so easy to accept that emotionally (much how the fat-accepting person still has trouble with body-negative thoughts). But my decision to stay away from recreational drugs is, well, fraught, and I don’t think a lot of people understand that — understand how using drugs can be so exceptionally not fun for somebody who has to rely on drugs to be able to brush hir teeth and get dressed most days, much less anything more involved than that. So: it is definitely a “brain fog warning” post, definitely a harsh tone, but it came directly from the heart, so it stays as it is.