Tag Archives: health care

Second Shift for the Sick

(Originally posted November 2008 at three rivers fog.)

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?

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.

Recommended Reading for October 13, 2009

In the blogs:

The Ashley Treatment Yet Again:

I read as much as I can and try to keep abreast of any new developments. I do this because I remain deeply troubled by the larger implications of the Ashley Treatment, now referred to as growth attenuation by doctors. The change from the simple and easy to google Ashley Treatment to growth attenuation is not a matter of semantics. To me, this is a way for those that have relentlessly pushed this so-called treatment as a viable option to avoid publicity. Frankly, given the hysterical reaction by the mainstream media to the Ashley Treatment I cannot blame them too much. Nothing good came from the media’s pack mentality when the story broke in 2007. The doctors that advocated for the Ashley Treatment came across as arrogant and stuck their proverbial foot in their mouths multiple times. Disability activists were unable to articulate why the Ashley Treatment was so dangerous and were quickly type cast as stereotypically angry. Utterly lost in the furor was any nuanced discussion. Sadly, not much has changed and I remain distressed because I have just finished reading an article scheduled to appear in the American Journal of Bioethics entitled “Ashley Revisited: A Response to Critics” by Douglas Diekema and Norman Fost.

What Kind of Troll am I?:

If you are a reader of blogs about autism, you have seen your share of comments denouncing the views of self advocates around the web. Sometimes they are personal attacks on autistic people. Many rehash the same tired “Not Really Autistic” meme or promote urban myths about the causes of autism. Most feed pervasive stereotypes of one sort or another. Still others are so vile I won’t describe them even obliquely.

Most readers of this blog tend to be civil and capable of using reason to make their points. However, if you are someone who enjoys being abusive toward autistic self advocates and those who support their goals, you just might be wondering…What kind of troll am I? Here is a survey so scientifically valid, it is sure to be linked from AoA ASAP.

Pride & Prejudice:

Then, when I was 27, I was diagnosed with a mental illness. The doctor said to me (in effect), “You have a deeply flawed mind. It’s screwed up and you’ll have to take this medicine that slows your thinking and makes you forget everything. Learn to write it down.” Talk about a slap in the face. I ripped my clothes and dumped ashes on my head and whined long and loud to God about it. “Why me? Oh Woe Poor Poor Pitiful Me!” Then He said to me (in effect) “Deal with it. It’s what you are.” So I realized that I had no right to be proud of my mind anymore. It was kind of a release, because pride is a heavy burden, even when you’re used to bearing it. All of a sudden, I *wasn’t* better than everyone else, and it became easier to be patient and kind. Which turned into something kind of nice.

Freaks, Hercules and the Hydra [long]

Much has been written about the ambiguous nature of disabled people’s exploitation and/or free-willed participation in circuses in the 19th and early 20th centuries, and there are intersections with race and colonialism, among other things (some of which i touched on in this old post), and the film “Freaks” reflects that ambiguity, both from “within-story” and “external” perspectives – most of its cast were “real” circus performers, some of whom had already had long and celebrated careers before starring in it, and many scenes show the “freaks” performing parts of their acts, both in-context in the story and, more problematically, in other scenes that could be regarded as gratuitous (for example, the “Armless Wonder” drinking wine with her feet, or the completely limbless Prince Randian lighting a cigarette using only his tongue). Opinion has been divided over whether the film itself was an act of exploitation of its disabled performers – who were, as reported here, viciously excluded and discriminated against at the MGM studios – as well as whether its climatic scene represents a reversion to negative tropes of disabled people as monstrous and villainous, or a subversion of that trope (however IMO there is considerably more going on there – see below).

Breathtaking to behold: talking back to dismissal:

One of my biggest interests is the study of how oppression plays out, and how it is resisted, among communities that most people would consider minorities. (Note: Minority in amount of power, not in amount of numbers. So yes, women count.) Not some sort of study of victimhood the way some people would paint it, but rather how people resist becoming victims.

It is breathtaking to behold communities where enough people have worked out the way things work, that when they are hit with the usual forms of sexism, racism, ableism, heterosexism, etc., they are ready for it. They have answers to the usual bothersome questions and comments designed to disempower them. Even if the people attacking them don’t understand those answers, they at least are told a lot of the same things by a lot of people.

In the news:
Go, read this! It thrills me to no end.

CDC and disabled patients: ‘We’ll work on this together’ [US]

For many women, the inability to stay still prevents them from seeking regular breast cancer screening.

But a health education program is gearing up to encourage woman with physical disabilities to seek medical attention and get regular screenings.

“Women with disabilities are getting screened at a less regular rate because there are so many barriers with going to the doctor,” Egensteiner said.

The medical equipment used to perform mammograms also can prove a barrier for women with physical limitations.

Can you collect employee medical info to combat H1N1? [US] [Note: ADA = Americans with Disabilities Act]

Employer groups have been asking the Centers for Disease Control for guidance on whether privacy rules prevent HR from surveying employees about medical info designed to control the spread of swine flu. The CDC has responded, including an approved form for requesting certain types of info.

The CDC has issued a document – “ADA-Compliant Employer Preparedness For the H1N1 Flu Virus.”

Recommended Reading for October 12, 2009

Blogs:

The Invisible Crutch:

I’ve decided to build an invisible crutch from things that constitute abled privilege, without repeating too much of what is in McIntosh’s list (so read her list, and substitute “disability” for “color” for many of those things).

1. I can, if I wish, arrange to attend social events without worrying if they are accessible to me.

2. If I am in the company of people that make me uncomfortable, I can easily choose to move elsewhere.

This month’s Disability Blog Carnival will focus on Disability & Work:

Here are some suggested starting points: What work do you do? How’s that going? Do you get paid for it, or is it volunteer work or something you do because you just love it? What blocks you from employment? If you’re employed, what could be better? Do you want a paying job, or do you feel you contribute to society just fine without one? What unpaid work do you do that you value or that others value, for example, emotional support in relationships? If you’re a family member, friend or ally of a person with a disability, what thoughts do you have on work and employment? What’s the employment situation like for PWD in your country or region ?

Health Care & Vulvodynia [U.S. specific]

One of my concerns about health care reform in the US is how it will impact sexual & reproductive health, the domain in which vulvodynia and other pelvic pain conditions are usually classified. As far rights directly related to reproduction and abortion in particular, it’s looking grim. My hope is that patients with pelvic pain conditions will be covered adequately as well. This may not seem like the most pressing issue, since, frequently, sexual health problems will not be directly responsible for death. There are some definite exceptions, notably AIDS, and cancers.

For a few moments, I feel guilty thinking about sexual health in light of other deadly, catastrophic illnesses…

But then I remember that it’s not fair to minimize the very real suffering & misunderstanding that I and other pelvic pain patients go through. And I remember how hard it is to convince others, including doctors, of how very real it is & how difficult it can be to get an effective level of care.

Fat Hatred and Disability on the Cleveland Show:

Sidewalks that are functional for an able bodied person are not necessarily useable to someone in a scooter. Poles that can be easily navigated when they are stuck in the pavement, are not necessarily easy to move around in a scooter. Often curbs are not turned down. Sidewalks are carelessly blocked off by cars hanging out of drive ways, and let’s not forget those who think that they don’t have to shovel their walkway in the winter. My personal favourite are those that believe the scooter rider should always yield when faced with a pedestrian on the sidewalk.

My Use of Ableist Language:

I can’t tell you how many times throughout my life that I have used the phrase “that’s lame” or “don’t be lame” in my life. It’s been a part of my vocabulary since grade school. I wasn’t really aware of the exclusionary and offensive nature of the word until college. That’s when I made the connection between the word “lame” and it’s association to people with mental disabilities.

In the news:

McDonald’s in row over mobility scooter [New Zealand]

McDonald’s is yet to deliver on a promise to say sorry to a woman who was denied service in a drive-thru, because she was on a mobility scooter.

Margaret Todd says she could not squeeze her scooter through the front door of McDonald’s in Blenheim, so had no option but to head round to the drive-thru.

Outrageous pre-existing conditions

(Originally posted a month ago at three rivers fog; in the meantime, news also came out that things like acne were considered pre-existing conditions as well: consider any and all further outrage well and fully included in the subject of this post.)

You’ve undoubtedly heard the news already. A history of domestic violence or C-section are considered, by private US health insurance companies, to be “pre-existing conditions,” which are used as a basis for denying coverage, rescinding coverage, charging higher rates, or other discriminatory practices.

Of course, this is outrageous. Why should a woman who has been beaten by some asshole be denied health care coverage? It isn’t fair.

But there’s something wrong here. And not just with this discriminatory practice — but with the people breathlessly reporting it.

Because, you see, it is being reported, not as:

Pre-Existing Condition Exclusions Are Morally Wrong, but as

How Dare They Treat DV Victims and Mothers the Same Way They Treat Women with Depression, Diabetes and Cancer!

It is being reported as different from “normal” pre-existing condition exclusions. It is being reported as being especially wrong. As being worse. A true moral violation, taking things to a new level.

But why?

Here’s the thing. Insurance companies refuse coverage to people with pre-existing conditions (anything from asthma to leukemia) because they know these people will be highly likely to incur greater costs than healthy patients. The entire rationale for excluding them is because they cost more money.

If you have had a C-section once, you are much more likely to end up having another one if you ever give birth again. If you have a history of domestic violence, you might end up with an abusive partner again, and end up needing care.

Yeah, it’s complete bullshit that these people would be refused health care. It’s downright immoral.

But why is it especially immoral to refuse health care to these women — but not to women with osteoporosis or an anxiety disorder or back pain? Or Ehler-Danlos Syndrome or food allergies or heart disease or lung cancer?

How is it any different?

Victims of domestic violence don’t deserve to suffer consequences for something that is not their fault. This is truth. It contributes to the very popular cultural myth that victims are somehow to blame for the abuse they suffer — that they must have done something to provoke it, or that they should have left, etc. All this stuff is highly damaging.

But that doesn’t make it different than telling a woman with lung cancer that she can’t have care because her disease is somehow her fault. Which contributes to the very popular cultural myth that people with medical conditions are somehow to blame for them — that they must have done something to earn them, that it’s their own fault they ended up that way, and therefore they lose rights to certain things because they are inflicting the costs of their mistakes on the rest of us.

Because if you haven’t done anything wrong, you won’t ever end up sick. If you do end up sick, there must be something you did wrong.

Maybe that woman smoked. And maybe that other woman slapped her boyfriend first. And that woman who was raped wore a short skirt and flirted with the man first. That does not make this violation her fault. This is basic feminist theory. “Blaming the victim.”

Health care is a human right. We all deserve basic health care that respects a person’s dignity and integrity and humanity.

So why are these things different? Especially outrageous?

I can’t identify any reason except one.

Because they apply to healthy women.

It’s understandable why health insurance companies would refuse care to women with arthritis. It makes sense that they would deny care to women with psychiatric disorders.

Because we, as a society, think it is OK to deny quality of life and societal access to people with medical conditions, disabilities and chronic illnesses. We have determined that it makes sense to discriminate against them. We get why these things are done. And they’re done to those people. Over there. Not to me and mine.

But C-sections? Why, one-third of mothers in the US will have a C-section instead of a vaginal birth! That affects me and mine. Therefore, it is especially outrageous — that we would be treated like we treat them.

Oh, but that’s not how you think?

Really?

What justification is there for acting as though these practices are any worse than the practice of denying coverage to women who have lupus?

There isn’t any that isn’t rooted in a deeply ableist bias.

How about we get outraged by the fact that there is any such thing as a pre-existing condition exclusion at all? I can get behind you on that one.