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.

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.)

Short background: Rush Limbaugh (link goes to Wikipedia article) is a US conservative radio talk show host who has risen to prominence in the US by inciting “controversy” after “controversy” with hateful rhetoric. He also went through an ordeal some time back for addiction to prescription painkillers, an incident that the US left likes to use against him. Recently he was rushed to the hospital again, which has spurred a new round of derision from US liberals.

Rush Limbaugh isn’t exactly a sympathetic character. His politics are vile and he makes a career out of escalating white male resentment into white male supremacy. And that causes real harm to real people who don’t meet the requirements to be part of Limbaugh’s He-Man Woman-Haterz Club.

How did he end up abusing prescription painkillers? I don’t know. Was he taking them for legitimate pain due to injury, surgery or a medical condition, and the usage got out of hand? Was he consciously using it as a recreational drug? I have to say I am still somewhat bitter about people who use the stuff I need to be able to get on with my daily life as a quick and easy “high,” ultimately making it harder to access needed medication. (But that is argument from emotion, mostly; I would posit that the real problem is a medical field and larger culture which does not take seriously the needs and concerns of chronic pain patients and is eager to punish people who step outside accepted boundaries.)

But even if he was just out for a high, I still feel unease when I see people use that angle to criticize him.

Because, here’s the thing… the same narrative that you are using to condemn this despicable figure is the narrative that is used to condemn me.

You are feeding, growing, reinforcing the same narrative that codes me as an abuser, that makes me out to be a good-for-nothing low-life, that makes it difficult for me to access the medication I need to be able to live my normal daily life.

When you laugh, joke, or rant about Limbaugh’s abuse of narcotics, you are lifting a page from the book of people who would call me a malingerer and interpret my behavior (frustration at barriers to access, agitation and self-advocacy to try to gain access) as signs of addiction. People who would, in the same breath, chastise me for “making it harder for the real sufferers.” (See why my bitterness about recreational use isn’t actually serving the right purpose, in the end?)

Maybe you don’t really think this way. But maybe the people laughing at your joke do.

And maybe, you just made them feel a little bit safer in their scaremongering about “addiction” and deliberate attempts to make life harder for us.

Scoffing at Limbaugh’s hypocrisy is one thing — but when your scoffing takes the form of a very common, quite harmful cultural prejudice — even when you don’t mean it to — it has real effects on real people’s lives. Sort of like that casual incitement that we hate Limbaugh for.

(Cross-posted at FWD/Forward.)

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.

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

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.

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.

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.

Jez-eb-el, specifically, but not only them.

When you do something so incredibly fucking stupid and offensive, I don’t give a shit if you apologize. I don’t even pay fucking attention. I don’t care what kind of apology or nonpology it is or how much you care or how much other people find it convincing.

Because fact is, if you “apologize” and then go on with business trying to ignore whatever issue you displayed astounding ignorance on, you don’t deserve forgiveness, I don’t care how awesome you may be in other areas.

The only way you’re worth our attention is if you use that moment of stupendous foolishness to educate yourself and turn around and use that knowledge for something. To fight for the people you wronged.

And we can tell when its genuine, folks. We can tell when it’s done out of foot-dragging obligation/image maintenance vs. sincere desire to better oneself/one’s world. To leave things better than you left ‘em.

You can’t cut off my leg, but then give me a really smashing manicure and try to call it a day. What you do to make up for things matters.

Absence of idiocy is not enough.

That is all.

ETA: Of course, Jezebel didn’t even make a sincere attempt to apologize; this post seems to imply they at least did that much. They didn’t. And it wouldn’t have mattered if they did. Because in the meantime, there has been an absence of sincere attempts to make something good out of it. Instead, there has been an attempt not to make one’s own self look bad again. That is what I’m getting at.

Why it’s important to make a concerted effort to promote historically-un(der)represented classes. You can’t flick a switch and have equality instantly turn on. Even if discrimination ceased to exist instantly, it would still take time to catch up — today’s chemistry-minded three-year-old girls aren’t going to reach the upper echelons of the field for at least another few decades yet. Of course, prejudice doesn’t instantly disappear simply because the law forbids certain manifestations of it in certain settings. So we reach a point where we’re looking to fill President Obama’s cabinet, but the levels from which such people would be pulled are still disproportionately dominant-class folk. This is where it does become worthwhile to pick Ms. Smith over Mr. Doe, even when they are very similarly qualified, simply for the fact that Ms. Smith is a woman.

What the bloggy left don’t understand about Obama’s approach to politics. It’s something I’ve always admired about his judgment. He will make a good-faith effort to work with his opposition to get done what needs done. But if that opposition responds to his good-faith effort with a bad faith effort, he will unapologetically move forward without them. Here’s one reason why this is a Good Thing: it’s a tactical investment. It builds trust in the broader community and fosters relationships with those members of the opposition who might be won over in the future. That’s a worthwhile investment to make, I think.

The consequences of our market-worship culture. What, exactly, makes a standard of living? Is it the fancy consumer goods we all have? A car for every person, a flat-screen TV in every house and a smartphone in every palm? Or is it something else? The security of a stable neighborhood, quality health care that isn’t a hassle, and a good education for your child even if you can’t afford the cost of living in the ritziest districts? These are things the private sector simply don’t excel at.

Self-care is essential. I do not use this word lightly. If these is anything my condition has taught me, it is the importance of learning one’s own boundaries and one’s own needs, and respectfully tending to them. Without this, you aren’t going to be any good to anybody else. You’re going to be more help to someone if you’re doing well yourself. If you’re rushed, stressed, overwhelmed with anxiety, severely lacking in sleep, seriously emotionally preoccupied, down with the flu, whatever — you’re allowed to stop and take care of yourself before you continue your work. Why do we insist that we push forward, always, through whatever challenges we may face? There can be virtue in that. But there can also be folly. I think this is a cultural force that could use some reflection.

After the reaction to a certain post of mine, I think this advice from Jill would be well-heeded in a variety of situations:

I understand that men are in an uncomfortable position when an abortion story is dropped into date conversation. Abortion is socially marked as taboo and horrible and universally emotionally difficult, so I understand why the first reaction is “You poor thing” or “You’re so strong.” I’ve never been in the same position as the author, but I have been on a first date where the guy dropped his almost-abortion story: His girlfriend got pregnant, they decided to terminate the pregnancy, and then she had a miscarriage. It’s not an easy story to respond to, so I fell back on How To Deal With An Awkward Conversation Topic 101: Mirror the other person’s reaction. He seemed like he was sad about the situation, so I think I said something along the lines of, “That sounds like it was really hard, I’m sorry.” And the conversation moved on. I also had a friend who once told me the story of his hugely swollen testicle — like, baseball-sized. In recounting the story, he was cracking himself up, so I laughed along. It’s really not all that hard to take your cues from the person who lived through the unpleasant ordeal. And I think that’s the author’s point: Not that men should universally think abortion is no big deal, but that they should take women as individuals who have varied responses to situations, and who very well may not be traumatized or upset at all — but who may nonetheless be highly annoyed and physically discomforted by a 30-day period. Or they may just be relieved. Or they may be sad, or even devasted. Or they may feel stupid for getting pregnant. Or they may have emotions that are mixed and that evolve. You know, like most human beings.

Read Kate take a righteous hammer to the bullshit that is how we, as a culture, introduce children to disability. Woo go Kate!

OK, this post might seem a bit out of place (and ignore the quick bit of gender-enforcing at the end). It’s just so deeply joyful to be a witness to another person reveling in wonder, over things big or small. Grapefruit isn’t my thing, but you find enjoyment in funny places.

This is why I love slacktivist.

Adam Serwer took all of three posts at TAPPED, I think, to become my favorite writer at the mag (and it’s not for my lack of appreciation for Klein). This kind of reflection is why.

Jindal and Obama could not be more different, and the contrasts begin but don’t end with the fact that one of them changed his name to fit in while the other carried his daddy’s “funny” African moniker all the way to the White House. Last night, the differences were clear: Where Jindal was awkward, Obama was confident. Obama has mastered his voice, Jindal sounded like he didn’t know how to give a speech. Obama had mastered a variety of tones and cadences early in his career, Jindal offered a forced folksiness to a sing-song tune. But perhaps the most telling part of Jindal’s response was his extended introduction of his family history. Until now, the GOP has allowed the press to make the Obama comparisons, last night, Jindal tried to make one himself, an act that was inadvertently self-diminishing.

You can’t find your voice by trying to become what everyone else is. You do that by trying to find what it is that makes you you. See also M’s musings on identity.

I’m off to bed, to dream of miniwheats in the morning.

for Christmas, i sent my mother a gift card for a local grocery store (she was already in awful shape financially — add in a ballooning ARM and a serious recession and things get pretty bad). i asked if the locations were any good (there were takeovers going on when i was moving two years ago). her reply,

“yes we are going to Food 4 Less they built one on North Court, you can only go there in the daylight, too many shootings”

mmmm, home.

i work in an office now dealing with those same people, those people everyone is so afraid of. the poor people. and especially those who are racial minorities (well, actually racial pluralities where i grew up). you know, the trashy people, the ghetto people, the gang members, the baby mamas and welfare queens.

when i moved out on my own in 2004, a four hour drive from anyone with whom i had even acquaintance, i was warned profusely about the dangers of being a young, single girl out on her own. in public or in my home – no matter, it’s all dangerous. really i shouldn’t be going at all, because you never know what could happen to you, you know, around them.

living in orange county i found in my college peers a strange aversion to using the free-for-students bus system to get around. the system was clean, safe, with good frequency and practically no point at which there wasn’t a stop within a mile at most. but these kids just couldn’t bring themselves to use it. my roommate was without her car for one day, just one day, and she skipped classes altogether rather than take the bus to school and back. my conversation with her made it quite clear why. she felt it was beneath her. and, my curiosity piqued, i found similar attitudes in many of my classmates through my time there.

why? what is it about the bus that makes it so untouchable? it’s not the bus system itself – again, impressively clean, incredibly easy to use, and free! throughout the entirefuckingcounty! no – it wasn’t a systemic problem. it was a problem of proximity. proximity to them.

and, ok, it annoys the shit out of me.

you aren’t going to die of the ghetto cooties if you find yourself within a couple yards of a poor person. they aren’t going to bite you. stop acting like you’re passing through the lion cage at the zoo.

this middle class obsession with “safety,” with where’s a “good” area to live, and especially where is an acceptable place to raise a child, with the very heavy implication that allowing a child contact (especially regular contact!) with the cooties-carrying poor folk is tantamount to abuse – it drives me absolutely upthefuckingwall.

i’m just tired of it. look: i grew up with Those People. hell: i grew up being part of Those People. and though i am mostly comfortable financially now (it’s nice, having a husband who can work full time, not having to rely on anemic disability benefits) we still live surrounded mostly by Those People. Those People are my people.

and i say this as a moderately conventionally-attractive skinny young white chick who dresses and behaves like a solid member of the middle class (trust me, i learned how to “pass”) – all the things which supposedly make contact with Them so dangerous – as long as you aren’t stupid (you know, the old flashing-your-cash cliche), you can walk among Them and make it out alive. because really, when you get down to it – look: They are the same species you are. you can even breed with one and produce fertile offspring! (well, i guess that’s not that much of a revolution – it seemed to be about the only purpose the higher classes [that's you too, mr. middle man] had for direct contact with Them throughout history…)

anyway – if you understand these people as people, and learn a little common sense (that is, not limited to “stay away altogether”) you’ll do just fine. even if you’re white. even if you’re middle class. even if you’re a chick. even if you’re all of the above!

and maybe if more of “Us” started treating “Them” as, well, us (and not in that fakey feel-good liberal way) maybe we’d find out that there’d be much less reason to stay away from Them than we thought.