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.)

Asking for help is something I have never been good at. It’s rather like standing in front of a car hurdling toward you, intending to push it in the opposite direction. It requires an enormous amount of resistance. And I’m almost certain to come away with some sort of injury.

Lying in bed the other night, I had a realization. I seem to have two modes of being: at rest, sitting or leaning or lying in one place, unmoving, still; or in motion, pushing, moving, rushing, doing, working, over-working. And it is very, very difficult for me to move from one state to another. It is not as easy as just get up and go or sit down and stop. It would be expected, with my disabilities, that I would have trouble getting up from a state of rest to start doing, but wouldn’t you think it would be easy to just stop myself from doing and rest?

But it’s not. I find it very, very difficult to stop moving, working, doing when I am already doing it. Very difficult. In fact, I actually have to work at stopping working. It’s like once the do switch is on in my brain, turning it off is about as easy as pushing that hurdling car. I get to a point where I don’t even notice that I am doing; my consciousness turns off and I am pushing forward on autopilot, working from habit, memorized routines, just going and going — and my awareness has been switched off, perhaps as a way to avoid feeling the pain?, but that means I don’t know when it’s time to stop. I don’t know when I’ve reached the critical point, when I’ve done too much, when I cannot do any more — often, I don’t know until my body just stops doing and I am confused inside it, trying to make it move and being denied, and it takes time for my consciousness to boot back up, to kick on and make me realize oh — I need to stop.

It has come to a point where I’ve learned that I need to stop before it feels like I need to stop, because my body and brain simply do not have the ability to sound the alarm for me. Even when my body can’t keep going anymore, no matter how much I push it, it still doesn’t feel like I can’t keep going anymore.

So I’ve been teaching myself, over the years, to force an override at a certain point — not based on what I’m feeling at the moment, but based on predetermined amounts of time/work that I believe is what I can handle on the balance. It’s hard, because I’m so stuck in that inertia of doing that I often don’t even remember to keep track of the amount of time/work that has passed, so I might forget for some time after I’ve reached that point, and then try to abort belatedly.

Either way, even when I’m “being good” and recognizing when that predetermined point has come, the act of overriding my natural inertia — my natural tendency to keep moving — is not as easy as flipping a switch. I actually have to go through a process of convincing myself that yes, it is time to stop, and yes, I really should stop, no, I should not keep going, and yes, it is okay to stop, really, it’s okay, and yes, I need it — and so on (and on, and on, and on). And then even if I am convinced, I have to try to push in the opposite direction of my body pushing to go and do. And pushing your body to stop pushing is about as technically-impossible as it sounds.

Now, convincing myself just that I should stop doing is a difficult enough thing to do. But add in a sense of pride… and a sense of guilt… and suddenly convincing myself that I should do (or stop doing) something doesn’t seem like such a hard thing in comparison.

***

I am one of two clerks working on our program at my office. Last week, for three days, my partner clerk was not there — it was just me running the show. And I happen to think that I am knowledgeable and capable enough to do a pretty good job of it. The problem is that we are severely short-staffed — the two of us in our corner of the building are already balancing a workload that should require four or five clerks. So when one of the two is gone, well, things move from chaos to crisis, so to speak.

I have an amazing supervisor. I absolutely adore her. And she was keeping an eye out for me. She kept coming back and asking if there was anything she could help with.

And for that first day, I kept saying no. And I thought it was legitimate! One of the main assignments is something she is not supposed to do at all, and another couple are things that I just thought would be more complicated to have someone else do than to do myself. So I said no.

And then my husband poked a little bit of fun at me — he works at the same office — saying that my supervisor had been talking with him (casually) and mentioned that she kept trying to offer help, and I kept refusing. And they shared a laugh, and he said yeah, that sounds like her. She’s not very good about asking for help when she needs it.

And I needed it. I just couldn’t convince myself inside that I needed it, that it would help, that it would be OK to ask, and so forth. I was already so overwhelmed and using so much energy, and I watched that car hurtling toward me and knew I did not have the strength required to push it the other way. Not on top of everything else I was doing. I did not have the capacity to make myself ask.

Because I’m not supposed to ask for help. That means admitting I can’t do my job. It means admitting my disability does make me less capable than other people. It means admitting my disability does exist and does affect me. And I’m not supposed to ask for help, because other people can’t spend their time and energy doing something for my sake. It’s not fair to them. I don’t deserve that, to have anyone other than me devote a single second to me. Other people would deserve that, but I am not deserving. If I ask for help, I am telling that person “I am worthless. Useless. I can’t do anything right.”

Asking for help means sending the message to the people around me that I am actually not as good a worker (as good a person) as I keep insisting to them that I am. That actually, I am inept and incapable. That I can’t do anything right, that I do mess things up.

Asking for help is asking for special treatment. Asking for help is asking other people to pretend like I deserve the same consideration as everyone else, and deserve to be considered just as capable as everyone else, while also demanding that they treat me differently, do special things for me that no one else gets to have done. Everyone else has to stand on their own, and here I am demanding that all these people prop me up and say that it’s just the same as that person over there standing on their own.

Every single time I need help, I have to fight these thoughts. Even if I don’t actually think them consciously. Every single time I need help I have to take time and energy to refute all of these thoughts to myself. I have to take time and energy to prove all those thoughts wrong. And that takes quite a lot of energy.

So I don’t ask. Even when I need it. Even when I know I need it. And even when I know, intellectually, consciously, that it is OK to ask for help, and that I should ask for help. I still don’t ask.

Because by the time I’m needing help, I’m already at my limits. I certainly don’t have any energy left to deal with that hurtling car.

From the O-R: Khalil Young, 13, and his sisters Kiara, 9, and Khammeelah, 4, tend to their patch of tomatoes this afternoon at (the garden)… Khalil also is a garden guardian who waters all of the plants on a regular basis.

Look familiar? My thoughts are conflicted in that post, about the real root (so to speak) of our modern issues with connection to our earth, but make no mistake: this garden is an unequivocal positive for the people who use it, and it makes me inordinately happy that it is here.

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Right-leaning media outfits are making a big deal out of this picture. “Who’s helping whom? Obama couldn’t care less”… Obama wasn’t being a “gentleman”…

There are two things going on here:

* Professor Gates, who has a cane so that he can move independently, could probably have made it down the stairs on his own. That’s not to say without pain or difficulty — but he wasn’t helpless. The reaction to this photo presupposes that the crippled man must be completely unable to help his own damn self, and that it is noble when the able-bodied officer presumes to “help” him. Do you see what this does? It removes Prof. Gates as an agent; it makes him, instead, an agency-less object, existing for the purpose of the able-bodied man: this time, as a signifier of character (taking on that noble burden).

* Speaking of noble burdens: the race of the men involved cannot be ignored. Sgt. Crowley is a white man helping a crippled man. In the right wing’s reading of this photo, Sgt. Crowley becomes a symbol of whiteness: an example of the way in which white men are Good, in which Good is defined as the way white men do things. Think boot straps: this fantastical myth is all about the inherent goodness of the white man, who does things the right way, in contrast with the minorities, who are too lazy, selfish, etc. to bother. Sgt. Crowley presuming to help Prof. Gates stands in contrast with President Obama, who is walking ahead, minding his own business. This shouldn’t be an issue, but it is seen directly in front of the white man taking on the noble burden, and thus becomes an indictment on the character of the shiftless, self-absorbed black man.

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And speaking of that beer summit:

Who was it for?

Of course it was reported as a sort of reconciliation: a way to help Prof. Gates and Sgt. Crowley make up. But that wasn’t what it was.

To sum: Prof. Gates arrived home after a long and tiring flight, and couldn’t get in his house. Someone called the police, thinking that a stranger was breaking into his home. Police arrive when Prof. Gates was already in his home and calling a locksmith. Prof. Gates shows ID to Sgt. Crowley proving this is his home, may have been “belligerent” in doing so. Sgt. Crowley responds by luring him to his front porch, where he is handcuffed and arrested for disorderly conduct. Outrage ensues; charges are dropped. (Police insist the original caller reported that black men were breaking in; recordings prove that she said nothing about race at all.)

Journalist asks Obama about this during a health care press conference. Obama says a few predictable, innocuous things, then says that it is obvious that the police “acted stupidly” in arresting Prof. Gates in his own home for no crime committed, then makes a simple comment about the inarguable history of racial profiling in this country.

Sgt. Crowley objects loudly, saying the President is “way off base.” Sgt. Crowley is obviously very upset, and the police force is standing in solidarity with him. The country is beginning to criticize Obama for admitting the troublesome racial aspects of the story; the conventional wisdom is becoming that Obama bit off more than he could chew in “bringing race into this” — and white America will make sure that he is taken down a notch for it.

So Obama invites the two men to the White House for a beer. The country reacts with mild derision — but the attacks begin to fade. The issue is neutralized.

See what’s going on here? White man does something unfair to black man. Black man protests that this was unfair. White man’s sensibilities are offended at the accusation that he could ever be An Unfair-ist, makes this into an argument about whether or not he is a Good Man (being unfair would necessitate that he is a Bad Man). All his friends know that he is, in fact, a Good Man, and they stand up to say as much. Black man looks around, realizes that the numbers are not on his side. That everyone has ignored the unfair way he was treated, and his family and friends have been treated throughout history. That there is unrest among them, and he may face very real consequences if he presses the issue any further.

So the black man backs down. Makes conciliatory noises. To soothe the white man’s feelings. So that the white man won’t cause him any more trouble.

What was this beer summit about? Did Obama really think he was going to solve the issue of racial profiling and police officers behaving unethically by inviting two men out for a beer? Of course he didn’t. That wasn’t the purpose.

The purpose was to get the offended white man (and his white friends) to shut up and stop causing the black men trouble.

And I don’t blame him.

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Quick, think of a disease or condition that affects only men and is considered by a large portion of the population to be fake, created by the pharmaceutical industry, or psychosomatic.  *Sound of crickets.*

An excellent look at the gendered construction of medical conditions at the Women’s Sports Blog.

Most of the language about credulous patients being duped by Big Pharma is directed at women and conditions they suffer from disproportionately.  Women are, after all, emotional and have the ability to create amazing physical symptoms solely from their minds.  At the same time, women’s bodies are considered to be in a constant state of abnormality relative to men’s bodies.  The word ‘hysteria’ is etymologically related to the Latin word for uterus, which was long considered to be the site of women’s mental health problems, and hence its removal is called a hysterectomy [...]

‘Just get out and exercise’ or ‘just change your diet’ is fairly lousy advice for anyone who hasn’t been able to get out of bed. But as a society we still maintain the illusion that changes in hormones, brain chemistry, or the like are failures of self-control or willpower.

She also discusses the disproportionate burden laid on mothers of disabled children. Read the whole thing.

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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.

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

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

Candace left the following comment:

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

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

Coldneedles responded:

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

Want to know why?

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

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

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

Coldneedles, you are not the only one.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Why did I feel like I had to justify myself?

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

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

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

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

Renee wrote an excellent post responding to an emailer who wanted to know whether a white woman can call herself “womanist. I’ll pull a Renee here — here’s a quote to get you started; you’ll have to head over to her blog to read the rest:

I understand why womanism seems attractive from the outside.  It truly advocates for the equality of all beings however, it is a movement spawned by the rejection of WOC; more specifically black women by mainstream feminism.

When we look at social justice movements across the western world they all have one thing in common, they are lead by whiteness.   Despite a claim that said movements are about equality, the racial dynamics are positioned in such a way as to reaffirm our dissonance in worth and value.   This purposeful erasure,  or more specifically absence of power is a result of the social belief that whiteness is not only naturally fit to lead but ordained to do so.

How many times have blacks and whites worked together in various organizations only to find that our voices are silenced?  We continually make  suggestions for activism only to have it denied and then later accepted when it is rephrased by a white member of the organization.  The racism in this activity is never acknowledged and the white person is given the credit for the idea.   When we make a comment as to how race interacts with an issue, we are again silenced and told that we “are imagining racism”, as though whiteness is any position to decide what is and isn’t racist.

In a recent post Monica of TransGriot suggested that feminism needs to work on its own issues first and I must say that I highly concur with this point.  There are so many divisions in feminism that we cannot even begin from the basic idea that all women are equal and face multiple forms of oppression.   What we find is that different offshoots tend to privilege their experience over that of another and then declare themselves fit to judge how other women live their lives. We have radfems slut shaming sex workers,  third wave feminists stumbling on their privilege while ignoring critical anti-racist work, eco-feminists who promote  environmentalism based in an essentialist understanding of gender, Marxist feminists  that are blind to anything that is not related to finance and liberal feminists who only want to be the “equal to a man”, never thinking about what constitutes “woman”. While there can never be a monolithic woman, the lie that sisterhood will save us all continues to be repeated.  Privilege has always been and always will be the Achilles heel of women’s organizing….

Go read the rest

Seriously, go read Renee first.
What follows are my own personal reflections as a white woman watching womanism with interest.

I know what I am. I’m a privileged white girl. I may’ve grown up poor but I sit in a seat of comfort now. I live with a disability, but one which grants me a fair amount of privilege even within the ranks of pwd. And… that’s really about it. I am privileged in every other way. White, young, cis, straight, heteronormative, middle class, thin and healthy-looking, native English speaker, mobile, disabled but “pass”able.

So, there’s a lot of bullshit to bulldoze thru’ before I can start to see things clearly.

It took a serious smack in the face for me to get off my ass and start seeking out the opinion of WOC during the conflicts that broke out in the feminist blogosphere (iirc) early last year. Race has been part of my background, growing up — something I was definitely aware of, something I cared about on a core level, but something that stayed safely in the background at all times. That’s privilege. I never had to think about race in my day-to-day life.

But something in that conflict just got under my skin.

And I wanted to start thinking about it. I wanted to learn, I wanted to listen. I wanted to be an advocate, a friend. I wanted to be witness to what I saw going on in their circles, something that just looked right.

Honestly, that’s the same way I was drawn into the feminist blogosphere a couple years previous.

Feminism… it is what it is. Feminism is what gave me a framework for understanding social justice. I’ve learned so much from feminism. And I’ve met so many awesome women through this community. But there is no doubt in my mind that feminism, for its strengths, is a movement centered, to a fault, around women like me. The feminist movement is built to serve the interests of white, higher-class, straight, cis, fully-abled, “enlightened” liberal, “health-conscious” women. And it is a movement which is undeniably hostile to those who challenge that paradigm — purposefully alienating.

Which is why womanism came about. So women of color had a space to work for the benefit of women where they were the center — where they weren’t treated with disdain, like dogs at the table begging for scraps.

It’s incredible to watch what results. These are amazing women doing amazing work. And there is something about the movement that really cuts to the core of social justice. There is something about womanism that centers people as people in a way that feminism, in my eye, just doesn’t, when looked at as a whole.

I’ve seen that same something in the disability community, and in the trans/queer communities. There is just something about these people, beat upon by the world, who reach inside and dig down to the core of humanity. And it shines through. The movement does not aim to simply grab power for a class of people. The movement aims to find those most hurt by a hostile society, and to treat them with dignity and respect. No matter who they are.

There is a heart in these communities that I only see in part of feminism. People who are taking the beginning principles of feminism and attempting to strip them of the privilege-upholding layers of shit that have been laid upon them through history. But it’s not enough to make feminism better. To make feminism not a privilege-upholding, power-seeking movement.

But there is something in womanism that works differently. That moves, not for power, but for justice. And that something — it just feels right.

These movements are not perfect. There are dynamics in every movement that merit a critical eye. Humanity is messy.

I admire the hell out of these movements. But I can only lay claim to one. The others, no matter how I identify with the heart of them, I do not get to claim. I do not get to be part of. They are not mine.

They just are. They exist. For their own purposes.

When I see a woman I admire the hell out of speaking about how deeply she was hurt, by my movement, a movement to which I contribute — she speaks about how she tried to work with them — us — and was betrayed — and now she wants nothing to do with us, that they — we — I, make her skin crawl…

I am anxious. I feel awful. But I know what she is saying is truth.

I call myself feminist. It’s the best shorthand I’ve found to convey what it is I care about. But I know what else it conveys.

And I have to own that if that’s the movement I’m going to claim. I have to own all that bullshit. I don’t get to say “Well, I’m feminist, but I’m not one of those feminists.” It doesn’t work that way. I have the same damn privilege. I’ve been part of the same damn problems!

It’s tempting, confronting this, to toss away the label “feminist.” And to look longingly at the label “womanist.”

But that’s not my movement. I don’t get to lay claim to it. I don’t get to use it to cover up for all the bullshit that happens in my name — the bullshit I, inevitably, am part of making. That is not fair. That is not just.

That is, yet again, white women moving up a step on the backs of women of color. It is, yet again, white folk appropriating that which POC have built, by their own damn selves, for their own damn purpose, and using it in a way which not only makes them and their work invisible, but sets foot in their space, centers their community around us, again.

Takes over.

No. We don’t get to do that.

I want to be your friend, not your leader.

And the only way to do that is to stand back and let you do what you were already fucking doing.

“I think we need to get away from the idea that an ally is an identity and think of it as work that you are doing.”

I’ve said it before: There is no such thing as “a racist.” There are people who hold racist attitudes and do racist things.

And I think it’s useful here to frame ally work the same way. You are not an ally. You are a person who is doing ally work.

This — sorry for the sexist language (see there?) — completely castrates the immediate defense mechanism that is triggered in whomever may feel accused by a statement of racist (sexist, ageist, etc.) action: “But I’m not a racist.” What people are really getting at when they say this is: you are making a statement about my character.

Of course, the conversation about whether or not so-and-so is a Good Person or not is a lot easier for that person to argue than is the conversation about whether something they did is harmful to someone else. Easier on their ego, at least.

And that’s why it happens. It happens every damn time. And it’s an understandable reaction, to some extent. But when the conversation about the racist action stops there, that’s when it stops being a normal, human reactions and starts being obstructive, unproductive, harmful.

Which is why we really, really need to work on reframing the conversation. And by “we”? I mean white people. White people, and men, and straight folk, and the fully-abled, and Westerners, and other holders of various sorts of privilege. Not the people who are lacking in that privilege.

And in this hubbub about who is or isn’t an ally: we need to understand the conversation the same way. It’s not about who you are. It’s about what you do.

(Quote from Lynn’s comment at Feministe.)

Yet more bad news for the upper-class white liberals who are perpetually Concerned About Your Health(TM). Go figure.

I had always meant to expand upon this topic, but never found the right words for it, succinct and meaningful. But, well, that’s not exactly my style either.

My job situation is still shitty, and I’m currently part-timing at a retail pharmacy as a cashier. (Sample day: Mid-20s white guy “discretely” [read:blatantly] takes a picture of me on his cell phone as I am kneeling down assembling a battery display; someone shits in the toilet paper aisle [seriously! a person! took the time to unbutton their pants and all!]; I set alarm off while fetching pushcart from back room.) “The injustices of retail,” I said to my coworker, as I nursed the scratch on my finger from pushing that toothpick in a little too hard.

But honestly, I still do, and always have, appreciated working with the public. It’s the kind of thing that reeks a little too much of bullshit to say in an interview (“Really! I love when people show visible surprise at the revelation that I can do third-grade math!”) but, well, it’s true. I like people. I am, fundamentally, the kind of person who likes spending time with people (though my severe social anxiety always masked it). I’m not a butterfly by any means — good God, I can’t stand parties, pubs, or the mall at Christmastime, and I always need time to recharge after any extended social time — but I do enjoy interacting with a variety of different people, and there are days I go home smiling because of it.

Today I met a man named Robert. He stopped by to ask how long a sale price on a can of Folgers was supposed to last, and we ended up chatting for a good ten or fifteen minutes — the line piled up behind me, but I didn’t give a damn. Robert was in a wheelchair, for whatever reason, and was there to pick up his medication, whatever it was. He got his “paycheck” on the third of every month, and only the third (read “paycheck,” there, as Social Security disability check) but right now he was fighting with Verizon, who apparently shorted him half a hundred dollars worth of minutes on his phone, and he was going back-and-forth with them to get the situation righted, and anyway he wouldn’t be able to come back for his coffee til then. I was nodding and exclaiming the whole time as he was describing how much fighting he had to do — to get his transportation to the doctor, to work, to the grocery store; to get his medicine filled correctly and on time; to keep his welfare benefits flowing smoothly (there is apparently a very common mistake that gets made on his account every couple months, and he then has to make a dozen calls here and there to get things patched up, and then a few weeks later some new worker makes the same mistake again, and…) etc. etc. etc.

God did I identify, and I didn’t have to deal with the half of what he did. The fatigue and the worry and the energy and the stress and the wasted time — and when I related as much to him (having by this point unfolded my stool and sat down over the counter) he laughed it off — “Oh hell, I’m used to it by now — doesn’t bother me.”

I hope I never get to that point. No one should ever have to get to that fucking point. No one should ever have to spend half their waking hours, no fucking exaggeration, correcting other people’s mistakes just to keep the basic necessities of life covered — and then getting attitude from those same people for being a pain in the ass to deal with.

This is a serious time sink for the ill and disabled. It is time that could be spend — you know, maybe working? bootstraps and all — could be spent writing, could be spent playing board games, or taking a bath, or spending time with loved ones, or going out to eat — or any number of other things that are totally productive, constructive, positive things to do — which, to varying effect, do make contribution to wider society.

And it’s a lot of time. This is why I call it the second shift: much like the second shift of professional women, who arrive home from work to do the domestic work their husbands do not do: this is a disproportionately larger share of time spent fighting, always fighting, pushing determinedly (or tiredly) through near-constant resistance.

Resistance — truly the best word for it — it is as though “normal,” “healthy” folk are able to move throughout the world uninhibited, like pushing your hand into thin air — but sick people, disabled people must move through a world which is set up to prohibit their full participation — like pushing your hand into a thick heavy bog.

That is privilege. The ability to swim through your sea with nary a care, completely obliviously unaware of the freedom of movement you are so fortunate to have, while the rest of us have sand bags tied to our limbs, anchors roped round our waists, our feet set in cement blocks… and to look back at us and ask, “What’s taking you so long?”

It’s exhausting. I cannot convey in words how exhausting the fight is. Always on the defensive, always saddled with the knowledge that your basic needs require a struggle, while everyone else’s basic needs are pretty much a given so long as they put in at least a half-assed drop of effort. It’s not even just time spent, it’s energy.

Look at it this way. How do you build muscle? You subject your muscles to resistance, just enough to create thousands of tiny little tears in your tissue, which your body then, with rest and nutrition, repairs — which leaves you stronger.

But this does not mean that all resistance therefore makes you stronger. Because the more you pile on, the more tiny little tears you make. And the less time you have to rest, to eat and drink well, to tend to your bodily health, the less of those tiny little tears get repaired. And you find yourself, now, with millions of tiny little tears, and not enough time or fortitude to repair even only the thousands you had before this overload.

Which means you don’t get stronger. You get weaker.

“What doesn’t kill you makes you stronger.” What unadulterated bullshit. And it has the bonus effect of implying that those who do not feel stronger after a difficult incident, those who feel fatigued and despondent, those who see themselves as in a worse place than they were when they started — it implies that those people are choosing their fate. It implies that those people get something out of their misery.

Say, all you sick people out there: does any of this sound familiar?

What’s taking you so long back there?
I get it –you must just get off on being a victim.

Robert and I wrapped up our chat — turns out he lived in Anaheim for awhile, and also attended Cal State Fullerton; what a small world! — and I moved on to the next customer, affecting the smile and the sing-song customer service voice. Hi! Do you have your [Pharmacy Name] card with you today?

But it was nice, if only for a moment, to connect with someone. To, prompted by the unspoken invitation of a new friend, reach down into myself, and connect with the real person deep inside.

Maybe our struggles make us stronger; maybe they make us weaker. It doesn’t matter. We work with the tools we are given, and we still make something whole and beautiful, something worthy, something satisfying. Why do we have to come out of every fight bigger and “better”? Why can’t we be broken and hurt? Why can’t we cry, why can’t we curse, why can’t we be angry and disappointed and let down sometimes?

Right — because we wouldn’t want to make the rest of you face up to the damage you do to our lives. We wouldn’t want to “burden” you, wouldn’t want you to have to do anything to maybe reduce a little bit the fighting we have to do to live our lives. We wouldn’t want to make you have to think about how your actions and attitudes affect other people — wouldn’t want to make you uncomfortable.

When we are allowed to be angry, to be sad, to be bitter and disappointed, we are allowed to be human. When we are denied these emotions, we are denied our humanity. We are denied the full range of human experience.

It is fundamentally unfair — to weigh a person down disproportionately — to pile more and more shit atop their back — and then to grow indignant when that person lets out a sigh under the pressure — much less looks straight at you and lets rest the responsibility where it belongs. But this is how we treat each other — immigrants, queer folk, the disabled, those of color, the poor and disadvantaged — because we are fundamentally uncomfortable owning up to our own power.

Life would be so much better if we realized how much power we all have over each other — and how much power everyone else has over us — our interdependency. It is the concept out of which disability grows. And life would be so much better if we could look at this fact and see, not

scary,

or

unknown,

but

opportunity.