three rivers fog

Do you REALLY trust women?

For the purposes of this post, I would like to remind everyone that the range of disability includes people who are mentally ill, paralyzed, Blind, Deaf, permanently injured, autistic, physically disfigured, with compromised immune systems or disordered speech or chronic pain or cognitive impairments, and many, many others. Disabilities may be fatal or not, may be degenerative or not, may be apparent or not. Being painful, fatal, stigmatized, or poorly understood does not mean that life is not worth living, and I will not tolerate any attempts to enforce a hierarchy of disability; there is no category of Especially Bad Disability that destroys any chance of worthy life.

A blue-purple sunburst in the background, white letters reading "TRUST WOMEN: Blog for Choice Day 2010"

Blog for Choice Day 2010

Have you ever participated in the stigmatizing of pregnncy, childbirth and childrearing when the parent, child, or both have, or could have or obtain, disabilities?

Have you ever participated in the cultural narratives that say:

  • Older women should not have children because their children are more likely to have a disability
  • Women with disabilities should avoid having children because their children might also have a disability, and it would be wrong, unjust and cruel to give birth to a child that is not in perfect health
  • Women with disabilities should avoid having children because only temporarily-abled women can properly parent a child, or being a mother with a disability would somehow deprive the child of necessary experiences or put a burden on the child
  • Women with disabilities should avoid having children because they are more likely to be poor and need public assistance, and their children would also be more likely to use public assistance in the future, resulting in a drain on temporarily-abled taxpayers
  • Women with disabilities would be selfish to have children, and to do so would contribute to environmental destruction, economic decline, and even degradation of the human species, and they and their children would be less valuable members of society because of their lack of perfect health
  • It would be a tragedy to have a disabled child, disabled children are less desirable than temporarily-abled children
  • Life with a disability is inherently worse than life without one; life without a disability is the baseline by which all life should be measured, so of course to have a disability would be a negative and would make a person’s life worse
  • Disabled children are a burden on their temporarily abled parents, more so than any other child would be, and this is because of the child’s disability rather than because of the lack of support and affirmation throughout all levels of society for PWD and their loved ones
  • Of course it is more desirable for a child to be perfectly healthy than to have some sort of medical imperfection, and those medical imperfections are a big stress and hassle on the temporarily abled people around the child, and there is something wrong with the child for failing to meet an impossible standard of perfection
  • Health and ability are objective concepts and our current cultural wisdom on them are completely right and the medical industry that puts them forth is infallible; our ideas about health and ability are the only right way to look at things and can be universally applied
  • To violate those cultural ideas means that you are inherently flawed
  • The answer to all of this is to go to excessive lengths to avoid ever having, or being around someone who has, health problems, up to and including letting the least healthy die off or be terminated before they can live at all

You know what? I’ll bet you’ve all done it. Even the most radical disability activist has participated in some of these cultural tropes at some point in their lives.

But I’ll bet the vast majority of people “blogging for choice” would never think of disability as related to “choice” issues, and if they did, it would be for the right of temporarily-abled higher-class white Western women to terminate a pregnancy that has a more-than-minute chance of resulting in a less-than-perfectly-healthy child.

This is why the “choice” framework fails. It fails all of us, but it particularly fails those of us who fail to meet society’s idea of the optimal person: the pale, thin, beautiful, and financially comfortable picture of perfect health. The person who never relies on others (no!), is “self-sufficient,” and isn’t likely to end up a burden on the important people.

The rest of us can “choose” to stop existing.

Do you really trust women? Or are you perfectly willing to override their choices if you feel they threaten your comfortable position in society?

And you expect me to think you’re any better for my rights and needs than pro-lifers, why?

(Cross-posted at FWD/Forward.)

by amandaw on Friday, January 22, 2010 at 7:43 pm 3 Comments
Tags : ableism, choice feminism, class, cultural lens, culture, disability, feminism, health policing, justice, language, mental illness, neurodiversity, normal is only one option, politics, pop culture, pregnancy, privilege, privilege-check, problematic attitudes, reproductive, self-determination, shaming, social justice, social treatment, speak up, the left, the right

I have one question for you.

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.

by amandaw on Sunday, December 20, 2009 at 1:07 pm 16 Comments
Tags : ableism, abuse, accessibility, class, color me unsurprised, community, disability, economics, feminism, healthcare, i thought you were supposed to be my ally, justice, mental illness, politics, power, privilege, privilege-check, problematic attitudes, rants, reproductive, self-determination, the left, the media

On mental illness

Written originally for my stint at Feministe at the beginning of July; been working on it bit by bit ever since, but suddenly it has become topical again.


Part I: The Personal

Note: I’m going somewhere with this. Please keep your mind open as you read, because I will be coming back in Part II with a concept that may seem to conflict with your initial reading of Part I. Thanks.

Understanding my background is essential to understanding my understanding of these things. And so we go.

My brothers and sister, between them, share two diagnoses of bipolar disorder, one of schizophrenia, two of those with psychosis, and all three have severe depression and/or generalized anxiety disorder. That is only what has been diagnosed by mental health professionals — D* was only diagnosed by way of being taken to prison and has not seen a doctor otherwise in decades.

My mother never saw a mental health professional and never will, but she shares most of the symptoms my siblings display, and my own mental health professionals have agreed with me that if there is a diagnosis to give her (with all requisite caveats), it would be borderline personality disorder.


1.

My brother D* had the worst situation of the family. He was the first to go to jail: when he was taken to court for some sort of licensing issue, he refused to give his name. Wouldn’t speak. And so they put him in jail. And he stayed there for eight months before relenting so that he could just go home.

How long would you stay in jail for a principle?

MORE

by amandaw on at 4:47 pm 17 Comments
Tags : class, community, control, culture, disability, diversity, family, health policing, healthcare, home, identity, justice, language, mental illness, neurodiversity, normal is only one option, personal, privilege, problematic attitudes, self-determination, stories, treatment, welcome to my life

Friday Catblogging and This Moment’s Roundup

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Today’s roundup brought to you by oh look a feather toy!

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by amandaw on at 4:34 pm 1 Comment
Tags : accessibility, advertising, assholes, beauty, body image, catblogging, control, culture, defaulting, disability, diversity, feminism, fuck that, healthcare, justice, mental illness, normal is only one option, photos, politics, privilege, problematic attitudes, roles, scams, the left, the media, this all sounds awfully familiar, treatment, video

Disability Is…?

Apologies for RSS readers; I forgot to cross-post this when posted at Feministe! Getting it posted so I can move on to new posts.

***

We had a really good discussion about nondisability. It got derailed, a bit, because it depended on our ability to reasonably define disability. And it’s a subject that has come up in every discussion we’ve had these couple weeks. What is it?

I advocate an intentionally overbroad definition of disability. And I definitely see a tendency, with certain medical conditions, not to identify — on that inner level, what “feels right” — as disabled.

I support every person’s right to self-determination, to define their own experiences, and to identify however feels most right for them. I do not want to try to pressure people into identifying in a way they do not feel comfortable. But I do think that part of this tendency, this reticence, is rooted in a sort of ableism. Not ableism as in “internalized negative feelings about PWD” — but ableism as in “a certain understanding of how the world works and how society is/should be structured” … or, you might say, a certain model.

I want to explore a few things — explore our assumptions behind the word “disabled.”

MORE

by amandaw on at 9:56 am 2 Comments
Tags : accessibility, body image, chronic illness, culture, defaulting, disability, diversity, feminism, identity, justice, language, mental illness

Let’s talk about sex

Disabled sex, folks. It’s time.

This is an official request for your anonymous contribution.

I am working on a post about ableism in “liberated” sexual culture (including feminism, but not limited to it). And I really think there is no better way to illustrate this than with real words, real experience.

Do you have, or have you had, a disability (or, if you do not identify as disabled, do you have a condition which results in some sort of mental or physical impairment)? If so: Tell me about your experience in the bedroom.

Specifically, I am looking for ways your sex life differs from the “liberated” construct. I want to hear how your disability affects your sex life, in negative ways, in positive ways, and in ways that go beyond that dichotomy.

I want to make clear that “sex,” here, should be interpreted in the broadest possible way. Sex with or without partner(s). Het or queer. Any sexual bits included, any sexual act, no matter how long, short, light, heavy, simple or complex. If you think of it as sexual, then yes, it “counts.”

Some questions to start your thought process:

  • What difficulties do you face?
    Is there anything you are prevented from doing, or prevented from doing “normally”?
  • And how do you adapt?
  • What do you do to make sex enjoyable?
    How do you change things, modify things to make them work for you?
  • How do you create new ways to find sexual pleasure?
    What do you do that you’ve never seen anywhere else?
  • Do you feel like you’re the only one who does (a certain something/a certain way)?
  • What do you do? What do your partner(s) do?
  • And how does it feel?
    What do you experience, what is going on in your body and mind, from start to finish?
  • Do you orgasm? How easy or hard is it to reach it? Is it important to you to orgasm?
  • What is it about sex that you enjoy? What is it that makes it worthwhile?
  • How important is sex to your life?
    How much do you want it? have it?
  • Has media portrayal of sex affected you? Societal attitudes?
    What have you seen or heard, been told, been treated like?
  • What have you gone through in seeking health care for sex-related issues?
  • Do you have any other stories or experiences?

I do prefer that entries not simply be answers to the above questions survey-style; I want to hear your experience in your words. Tell me a story — write me a poem — paint me a picture — however your experiences are best expressed.

Again: All answers will be anonymous. I will not attach any names, even pseudonyms, to these entries; they will simply be presented as they are.

To contribute, click here.

The link should take you to a page with one text box and one line for your email (which is optional).

If you need to contact me:
My email is amndaw (skip the second “a” in my name) AT gmail DOT com.
Alternatively, just use the form above to say “Hey, email me back!” making sure to provide your email address.

A few more notes:

If your contribution is anything other than unformatted text, contact me (see above) and I will work things out with you. For example:
If text formatting is important to your piece, you can send me an Office/OpenOffice document.
If you wish to express yourself in visual media, you can send me a still image of any file type — I will do any conversion necessary to display in a web browser.
If you prefer to create a video, you can send me the video file (I can point you to services for sending large files if need be, or I can help you upload it to an anonymous account for this purpose).

If there is anything in your piece that can potentially identify you (especially recorded image, video and audio), and you are absolutely comfortable with that, that is fine — but I prefer that anonymity to remain the default, so that more people feel safe and comfortable in contributing.

A tentative due date for submission will be Saturday, June 13, 2009. That gives you roughly two weeks. If you want to contribute, but that time frame does not work for you, contact me and I will see what we can do to make things work.

[shameless] Link around!! The more entries, the better. [/shameless] :-)

Thanks so much to everyone!

by amandaw on Friday, May 29, 2009 at 2:32 pm 1 Comment
Tags : beauty, body image, chronic illness, control, culture, defaulting, disability, diversity, feminism, healthcare, identity, justice, mental illness, metablogging, personal, privilege, problematic attitudes, roles, sex, sexuality, stories, the media

When is engagement worth it?

abbyjean has some questions:

this post may be a little inside baseball for those who aren’t active in the feminist blogosphere, but i think its an issue that translates. what to do when a big and influential blog or writer consistently posts things that are offensive, or marginalizing, or just plain stupid? is it better to stay part of the discussion to offer corrections and insights and laternatives, or is it better to save up your limited sanity points and bail on the forum all together?

i’m thinking primarily of the feministing blog here. it’s a huge feminist blog, probably the biggest general feminist blog, and it gets a whole lot of traffic. however, it puts forth a primarily white primarily non-disabled primarily cis-gendered primarily middle/upper class view of feminism, either by eliding those issues to the point of invisibility or by explicitly dismissing them. there was (and still is, afaik) a call for trans people to boycott feministing because of the way they handle trans issues, especially the comments in this particularly nasty thread. just this morning, there was a post about sotomayor that denied the intersectionality of her race and gender in the critiques of her nomination. and a recent comments thread in which people admonished as ableist for using the term “lame” whined about being oprressed by the P.C. police.

as a result, i’ve dropped feministing from my blog reader. i was annoyed more often than i was informed. it made me feel disappointment, rather than kinship, with the feminist community on that site.

but. then i see people like renee trying to make a point about the racial politics on the blog and getting totally shut down and dismissed and attacked by fellow commenters for making a good point that needed to be made. and i think about how much bullshit she is opening herself up to just for asking why the one feministing blogger of color is always the one to post about historic events of importance to people of color. and i feel like i should be there, supporting her, supporting those critiques. especially because feministing is such a big and prominent site and it can often serve as one of the introductions to the feminist blogosphere. i started there before i discovered womanist musings and the curvature and questioning transphobia and the like.

so – am i a better ally by refusing to engage with problematic forums, or by participating in those forums to offer relevant critiques? i still don’t know.

And this post is going to ramble in a slightly different direction than Abby is going here, so bear with me.

I think there are a couple of different things going on here and it’s worth trying to tease them out:

1. engagement with a space that is hostile, indifferent, or even just a mixed bag when it comes to an identity group you are a part of

2. engagement with a space that is hostile/indifferent/mixedbag when it comes to an identity group you are not a part of

1.

It comes down to a bottom line of five words: are you up for it?

It is a decision based 100% on what you personally feel you can do. You are doing what work you can, in any number of areas in life; you are not obligated to be there for every stupid word uttered by every clue-challenged person out there. You can engage if and when you feel up to it. It’s your decision whether 1) this is a time pushback should happen and 2) you feel like you can handle being the one to do it.

There is never a time where it is acceptable, in a situation where a privileged person does something stupid &/or harmful, to hold the person harmed to account for it. The onus us on the privileged person to not do that stupid/harmful shit. Not on you to somehow miraculously be up for every fight.

Sometimes, the fight will make some measure of difference, and sometimes it won’t. Sometimes, you can take that fight, and sometimes, you can’t. Or don’t feel like it. You can fight the good fight, even if it isn’t going to go down in the history books. Or you can skip it, and save your energy for other things — from another fight, in another place, on down the line — or for a hot bath later that night. You have a responsibility to you and yours; when it comes to collective responsibilities, where there is a conflict between one’s immediate, personal life and one’s group identity, the rule is: blame for any damage incurred falls solely to whoever the person/group is that you would be fighting. The ones who did that stupid shit in the first place.

2.

As a friend or ally, a person with privilege but who cares for justice for an unprivileged group, there really is no easy answer. Sometimes, there isn’t anything you can “just do” to make the problem better.

(Remember, you are a person with an obligation to do right by others — not a superhuman taking on the noble burden of saving the poor helpless Other. The difference between the two is that the latter makes the privileged person who the story’s about — the former removes the privileged person from the center of the conversation.)

Certainly, the privileged person’s choice to abandon a venue with a history of problems is a choice based in immediacy: it makes things easier for you; it relieves you of having to face those uncomfortable moments.

It does not follow, however, that the privileged person is obligated to stay at that venue and keep fighting. It’s not that simple, not that easy.

And this is where we must understand the importance of roles in the struggle for justice. Because there are many different roles to play, many different approaches to take, many different areas to address.

We — as a world of all people –need to keep each other alive,
need to free us from violence and hatred,
put food on our tables,
ensure our health,
keep our families together.
We need to strengthen our communities,
treat each other with respect and empathy,
accept difference, accept similarity,
but place no moral weight on one over the other.
We need to fight against hostile attitudes,
push back against stereotypes,
break out of confining narratives.
We need to examine and deconstruct
privilege
power
oppression
We need to know what they are and how they work
and we need everyone else to know it too.
Because, as much damage as you can still do as a person who understands these things, there’s no way there will be widespread change until many more people understand them too.

Here’s the thing — the immediate and the collective both need help.

So, it is useful to get in there, when someone says something stupid, and explain why that thing they said was so doggone stupid.

Even if it isn’t at some international press conference. Even if it isn’t many people. Even if your feeling is that those people aren’t going to go on to be murderers or congresspeople or someone who does something Big.
Even if it’s just you and that guy down the street. Or you and that ass on a message board.

Because if we eschew all action that isn’t Big Enough, will we ever do anything? If we give up because we can’t Make It All Go Away, In Just One Easy Step, are we doing anyone any good?

HOWEVER. And this is one great fucking big However.

If a person without your privilege takes you to task — personally or indirectly — because you’re sitting over there squabbling with Joe Know-Nothing down the street when sie is still hurting — you take that.

Sie might need food on the table, or affordable health care, or safety from violence. Or sie might want more attention on this court case, or help getting this piece of legislation passed. Or sie might want financial help to get this community project started. Or sie might want more direct engagement with hir, rather than talking amongst your privileged selves as those sie (and those like her) just don’t exist. Or sie might want more people to fight the good fight in another venue, for any number of reasons –

Sie has the right to be angry with you for not spending energy in the places sie feels are best. Because sie has the ultimate right to determine what makes an actual gdamn difference to hir.

That might put you in a bit of a bind. Because there isn’t any one easy thing you can Just Do and know that you’re doing the right thing and no one can be anything less than satisfied with you for it. There just isn’t.

So do you stick with it? Or say fuck it and quit (that particular venue)?

Well. In that case, you make a decision based on what you feel you can personally do best. You make a decision. And it is what it is. And you move on.

I don’t think this is quite what Abby was looking for — it’s not a practical answer, information that makes it easy to make that actual particular decision.

I think, mostly, it’s just that I never see this point being made: that we should all know that it doesn’t matter what we do, things will still be fucked up and we will still have responsibility.

But that’s not a call to apathy or despair. And it’s not an exoneration.

It’s just trying to remind us that we aren’t the center of this conversation. Do what you gotta do. It might be a hard choice (for me, feministing is an easy choice, but feministe is a hard one; that might be different for different people). And you live with the implications. Just know that it’s not going to tie up neatly in the end. That’s how things go.

by amandaw on Thursday, May 28, 2009 at 2:41 pm 1 Comment
Tags : brain fog warning, class, defaulting, disability, diversity, feminism, i thought you were supposed to be my ally, identity, immigration, justice, lgbtq, mental illness, privilege, problematic attitudes, race, roles, the left, the media, trans*

(Il)legal drugs and me

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.


* 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.


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.

by amandaw on Friday, April 24, 2009 at 1:42 pm 9 Comments
Tags : accessibility, assholes, brain fog warning, chronic illness, class, disability, drugs, fibromyalgia, fuck that, head asplode, healthcare, mental illness, personal, privilege, privilege-check, problematic attitudes, rants, stories, the left

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amandaw is a proud woman with a disability who doesn't have nearly enough time to deal with all this shit. Her space is dedicated to the examination of feminism, politics, the social model of disability, and the antics of her beloved cats. Things won't always make the most sense, so hang in there with me—but at least we'll have some pretty pictures to make up for it, ya?

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