Tag Archives: social policy

Recommended Reading for November 25

On Living with Pain and Taking Care of One’s Self

I have been managing my chronic pain and taking care of myself for years. But taking care of myself requires the cooperation of other people, and that can be the most difficult challenge to overcome. I cannot take care of myself or be well if others do not take my pain seriously. Just because I was able to do X yesterday does not mean I can do it today. The pain comes and goes. Once it starts I have to let it take its course. But society caters to people who are able-bodied and physically strong. Illness and pain are not compatible with the typical pace of life, and I admit I have anxiety about falling behind.

Living with an invisible disability can be exhausting – not only because chronic, searing pain is energy-draining (in my case), but because it leaves behind no evidence. Communicating with others about my pain often leaves me feeling misunderstood and isolated. Sometimes I want to wear tops that reveal my scar all the time, in order to silently “prove” there’s a *real* reason I just want to lie down, can’t carry that ten pound box, or don’t want to stay out all night partying. I cannot shake the feeling that other people doubt me or believe I use chronic pain as an excuse to get out of doing certain things.

Insurance Company Revokes Depressed Woman’s benefits over Facebook photos

Mental illness is no exception to this rule: people think they know what it looks like, that they can spot a person with a mental illness a mile away, and that if a person doesn’t live up to those expectations, they’re either seeking benefits they “don’t deserve,” or seeking attention. And with regards to depression specifically (as it’s the topic of the original article, and my greatest knowledge base), they tend to think that if someone isn’t spending all of their time crying, frowning, or refusing to get out of bed, they can’t possibly have it.

Your Scooter Means You’re Poor

I have learned that differently abled means poor to many. It means that you are not working. It means that you have no identity or interests. I understand for many being differently abled means poverty because we live in a world that does easily make the accommodations that are necessary to participate in paid work. Knowing that this is the case, why does the stigma attach itself so ferociously? If a person is unable to work because of a lack of accessibility, why do we feel the need to persecute them because of the way our society is designed?

When I tell people that I write, the answer is usually that it makes sense. It does not occur to anyone that I chose this because of a love of writing and sharing ideas. Writing is something that I was interested in from the time that I was a small child. Because I am doing it, it certainly is not real work. Such ideas do not attach themselves to a friend of mine, who makes his living freelancing in this area. Sitting together, people will invariably ask him a multitude of questions, ignoring me completely. It is understood that he chose his work out of love and not convenience.

A Different Kind of Test

More than two dozen seniors at Lincoln University, in Oxford, Pa., are in danger of not being able to graduate this spring — not because they’re under disciplinary probation or haven’t fulfilled the requirements of their majors, but because they were obese as freshmen.

It might sound like a joke, or a violation of individual rights, but James L. DeBoy, chair of Lincoln’s health, physical education and recreation department, said he sees it as his “professional responsibility to be honest and tell students they’re not healthy.”

In the news:

Disability turns laughing matter in Channel 4 comedy show [Headline is really misleading past the first few paragraphs of the article] [Also, oh gosh! People with disabilities don’t all agree on everything! I love that they spelled that out in the article, but it always bothers me that this is considered news.]

Penned by writers from Skins and The Thick of It, the series features six disabled characters marooned on an island, including a blind man, a woman with cherubism and a paraplegic man. Each character is played by a disabled actor with the same disability, and one complains about the number of non-disabled actors portraying disabled people.

Liz Sayce, chief executive of the Royal Association of Disability Rights (Radar), says: “There is likely to be a storm of comment from disabled people and non-disabled people alike over Cast Offs. Some disabled people will find it funny and real – portraying disabled people as adults who swear, drink and have sex. A real break from covering disability with kid gloves, or not covering it at all. Others may well find it offensive.”

Depending on narcotics

IMG_0172I take six medications. Five of them — the antiepileptic, the antidepressant, the non-narcotic pain killer, the muscle relaxer, and the oral contraceptive — are covered through a mail-order service. I receive a 90-day supply in my mail box every three months. No hassle. If a prescription runs out, my doctor is notified electronically, he then sends the new script electronically, and everything proceeds as normal with absolutely no additional step required of me. The only thing I do is click on the check-out button on the web site every three months. That’s it. No calling. No physical piece of paper to pick up. No wait at a retail pharmacy. Just a click and several days’ wait.

There’s one other medication I take. That medication serves the exact same purpose as all five others: it relieves my pain so that I can get on with my daily functions. I take it regularly, just like all five others. I have been taking it regularly for over five years now for the same reason. But this medication is not covered by the mail order service, because it is not considered a “maintenance medication” — despite that it fills the exact same maintenance role all five others fill, just by a different mechanism.

So for this medication, I am only allowed a 30-day supply at a time, and no refills — a brand new script each fill, which requires my doctor’s input each time. I have to call my doctor no sooner than the exact day it was filled last month, unless it falls on a weekend in which case I might get away with calling up to 2 days early. Then I have to call back a couple days later to see if the script has been written. If it has, it is printed out, and I have to physically walk in to the office, stand in line to see a receptionist, have them take a copy of the script with my photo ID, sign and date the copy, and walk out with the script. Then I have to physically take it into a retail pharmacy, wait in line, hand it to the pharmacy technician, then wait the required time for it to be filled. If there are no problems with my insurance, I then must physically present myself and pay for the prescription. Then I can walk out the door with my medication.

(And this is the process with a doctor who’s relatively friendly about the matter.)

It is quite a different process and one overflowing with “veto points” — points at which any party involved can cause any sort of problem and stop the whole process up. Maybe my doctor is on vacation and won’t be back for two weeks. He is the only one in my clinic who will write this script. I can’t call earlier in anticipation of his absence; they will not write the script before the last runs out. In that case, I’m stuck until he comes back. Maybe the system spits out some sort of error, like the one I received today: I was told the script must be written by my original prescriber. Which is this doctor. So now they have to go back and ask for the script all over again, and he isn’t in til tomorrow, and it’s not guaranteed to go through smoothly then. There have been other errors.

Maybe the insurance says no. For any number of reasons; I’ve dealt with prior authorization errors, quantity limit errors, errors because my insurance has suddenly decided to list me as living in an assisted-living home and cannot fill a prescription if I am. Maybe the pharmacy hits a snag, like the time they would not fill a written prescription until 2 a.m. that night because the insurance company said so, even if we paid out of pocket without billing the insurance.

And I’m going to keep running into these issues, and I will run into new errors every few months. I may have solved the last problem, but there’s always something new to pop up. I can never rely on this medication being filled on-time. It simply does not happen the majority of the time. No matter how diligent I am, how patient I am, how clearly and politely I explain myself — or how despondent I get, how emotional I get when telling them but I cannot work without this medication, and I don’t have leave on this job, and I can’t afford to be fired for missing work. Or whatever other pickle I’m in at the moment. It doesn’t matter. I do everything right and there will still be regular problems in getting my medication filled on time.

I’m sure, by now, you’ve figured out that this particular medication is a narcotic pain killer — hydrocodone (generic for Vicodin). I take it for chronic pain. I have been taking it for over five years this way, with the doses varying between one-and-a-half per day and three per day. And the only medical trouble I have ever had on it is when there was an excessive delay in refill during a bad pain flare and I got to go through the withdrawal for two weeks. (And I can tell you from experience: hydrocodone withdrawal is nothing compared to Effexor withdrawal.)

Narcotic pain killers can be a valid option for chronic pain patients. They fill a void left by other treatments which still aren’t effective enough to address our symptoms, which can easily be disabling. As you can see, I take plenty of other medications. But if I want to be able to get up and do something, I still need the pain relief the hydrocodone provides. So I take it. Because I like to be able to get up and do things. Like make the bed in the morning and feed the cats and make myself lunch and possibly run errands. Or — you know — work. Those silly sorts of things.

Here’s the thing, though. In both common culture and the medical industry, chronic pain patients who take these medications to be able to perform everyday, ordinary tasks that currently-able people take for granted — like bathing or showering or washing dishes or dropping their kids off at school — are still constructed as an addict just looking to get high.

You could almost kind of expect that for the narcotics. Most people do not understand the distinction between addiction and dependence. (Which is, basically, the distinction between taking a medication for a medical purpose so that you can go on living your everyday life, vs. taking a medication when you have no medical need so that you can escape from your everyday life.) This distinction exists for a reason; developing a tolerance for a medication is not a bad thing in and of itself, and must be weighed against the benefits that medications brings to the person.

Addiction calls to mind, though, a life being torn down. Addiction calls to mind a person who is seeing the detriment of a drug outweighing the benefit. A person whose life is falling apart because of the drug.

A chronic pain patient taking a narcotic pain killer under the close supervision and guidance of a knowledgeable doctor is exactly the opposite: sie is a person whose life is coming back together because of the drug.

But this image is not easily shaken in people’s minds. And so the chronic pain patient is reimagined as the addict. Hir behaviors are twisted to fit the common conception of the addict. If sie ever lets out a drop of disappointment at having problems with accessing this medication which is helping to put hir life back together — that is seen as drug-seeking behavior. And if sie lets out any sort of relief at the feeling sie experiences after taking the pill and having the crushing weight lifted from hir muscles — that is seen as “getting a high.” Heaven forbid sie show any emotion beyond just relief — like perhaps pleasure or happiness — at being able to perform everyday functions again. And any moodiness or other undesirable behavior can be easily attributed to hir “addiction.”

What’s strange, I notice, is that this reimagining is applied not only to chronic pain patients who take narcotics — but to any chronic pain patients who takes any pain relieving drug.

Take, for example, the anti-epileptic I take. It is not a narcotic. It cannot be abused — that is, if you do not have a neurological pain disorder, it will not do anything for you. You can’t use it to get high, get low, or get anything — except a couple hundred dollars poorer every month.

The only way this pill does anything for you is if you have some sort of nerve problem. And even then, the effect isn’t a “high.” Rather, it levels your pain threshhold — brings it closer to “normal.” No artificial mood effects, no giddiness, no lift. Just level.

And I still see this medication treated very similarly. Patients who take it are described in the same terms you would describe a drug addict.

And it’s just one of many. Any drug that relieves pain for a person with chronic pain will be painted in the same strokes.

At issue, here, is the conventional wisdom that our pain is imagined, that it has no real basis, or even then that it isn’t as bad as we make it out to be. That is the belief that feeds this twisted construction.

Because if you are imagining your pain, there is nothing legitimate you could be getting out of that drug. And if you aren’t getting anything legitimate out of it, but you’re still taking it — and getting upset when you don’t have it — well, that’s classic addict behavior, isn’t it?

If our pain were recognized as real and legitimate — if those messed-up-in-so-many-ways Lyrica commercials didn’t start out with “My fibromyalgia pain is real!” — this wouldn’t happen as much. Because if our pain is real and legitimate, then it is real and legitimate to seek relief for it.

(Of course, that assumes that pharmaceuticals are accepted as a real and legitimate way to relieve that pain.)

But people are going to have trouble with that. They don’t want to accept our pain. They don’t want to admit that it is real. They want to keep believing that it must be imagined. Because then, they can comfort themselves, in that murky area beneath our conscious thought, that they would never end up in our situation. They could never end up with any sort of medical condition. And if they did, well, they know how to do everything right, so they would never be affected by it.

This is why they scoff at our assertions that our experiences are real. This is why our conditions are jokes to a great many people. This is why “fibromyalgia is bullshit” has been the leading search term to my blog. This is why they seek so desperately to deny that these drugs — any drug — could be having a legitimate effect on us. This is why they treat us like addicts. Because they can see how we might reasonably be having real pain, and they can see how these drugs might reasonably be legitimately relieving it, and they can see how we might reasonably be upset if we are consistently denied access to the one thing that allows us to live our lives the way we want to.

And if all that is reasonable, then — shit — they could wind up in the same place someday. And none of their can-do bootstrap individual determination could magically get them out of it.

Addicts we are, then.

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.

It’s Your Fault: Socially Acceptable Disability and Popular Causes

Read a Czech translation of this post, done by Vera! Thank you, Vera!

In the furor of discussion on my post about breast cancer awareness campaigns which use exclusionary tactics, several commenters brought up some important points when we talked about why breast cancer has become such a high profile cause. Anna pointed out that breast cancer awareness started as a grassroots movement among women who were angry about the lack of awareness and the large numbers of preventable deaths going on, many commenters (including myself) pointed to the potential monetary gains to be reaped for companies which support charitable causes in order to be seen as socially responsible, and both kaninchenzero and Amandaw referenced the fact that breast cancer is a form of “no fault” illness, in the sense that people who get breast cancer are presumed to be innocent victims. The cancer, in other words, is not their fault.

This is not another post about breast cancer.

But it is a post about why some medical conditions become popular causes, and others do not. Because, in America, we definitely have ideas about what makes a good cause, and what does not, and a lot of those ideas are rooted in the idea of personal responsibility. This concept has deep roots in American culture and society, and it has pernicious and lingering effects which continue to this day.

The entire nature of American social policy is specifically structured around the idea that we can determine who is at fault for everything, that specific individuals can be faulted for things, and that those individuals should not be helped. Take the American approach to the poor. Despite ample evidence to the contrary, many people seem to believe that people should be held personally accountable for their poverty. Even though poverty is a classic example of an intersectional social issue in which the class one is born into, one’s race, and one’s gender all play a role, people persist in thinking that if poor people “just worked a little harder” or “showed some initiative,” then they wouldn’t be poor. I actually had a sociology professor tell me once that if the poor “weren’t so lazy, they wouldn’t be poor.”

Lung cancer was specifically brought up as a great example of “it’s your fault”  in action. Lung cancer is the deadliest cancer in the United States, in terms of numbers of people who die from it each year (so says the American Cancer Society). However, it is not nearly as popular, as a cause, as breast cancer. Why is that? Because only icky gross people who smoke get lung cancer.

That’s right. Did you know that people exposed to carcinogens due to their jobs/social class/homes, second hand smoke, particulates in the air which cause cancers, asbestos, etc, don’t get lung cancer? Only smokers do. Fact! And that means that lung cancer can safely be ignored, as a cause, because people are personally responsible for getting it. I’ve known a few people with lung cancer in my day, and every one of them has had some version of this conversation over and over and over again during diagnosis, treatment, and recovery:

A: “I have cancer.”

B: “That’s terrible, what kind?”

A: “Lung cancer.”

B: “Oh.”

A: “…”

B: “Do you smoke?”

Cardiovascular disease is another example of a very serious medical issue which involves huge numbers of people and is not highly publicized. Sure, the American Heart Association has some PSAs out, and some branded products of questionable usefulness, but many people are not aware of the scope of cardiovascular disease and its causes. Screening, prevention, and treatment are not as freely provided as services to support people with more palatable conditions. Why? Because only gross fat lazy people get cardiovascular diseases, so it’s their fault, therefore, it’s not a social cause.

Diabetes, again, another condition which is deemed to be the fault of the person who has it. If you are diabetic, it must be your fault. In addition to displaying a limited understanding of diabetes and how diabetes works (hey, did you know that there are different forms of diabetes?), this is also not terribly beneficial when it comes to actually dealing with diabetes.

The list goes on. You get the point. If a medical condition can safely be blamed on the person who has it, we can safely and collectively ignore it, as a society. If we were to admit that these conditions should be social causes and should be addressed, that would be tantamount to saying that we should provide support to people regardless of fault. And that, as we all know, is socialism.

AIDS, strangely, is a condition associated with personal responsibility which has become a cause, to some extent, although not on the same level as breast cancer. I think that this is in part due to some serious grassroots lobbying on the part of very diverse folks. But at the start? AIDS was written off as “gay cancer” and ignored. It was only after people realized that things like a tainted blood supply, needlestick incidents at hospitals, and heterosexual sex could be vectors of transmission that AIDS started enjoying some popular attention. AIDS was also furthered as a cause when prominent members of society openly discussed the fact that they had AIDS, humanizing the cause. Yet, AIDS continues to be a highly stigmatized condition. Fundamentalist preachers continue to rant about how the gays are getting their compeuppance, for example, and people with AIDS are usually assumed to have gotten it because of risky sex or drug abuse (in all fairness, IV drug users are a huge risk group for AIDS, in part because social programs like needle exchanges are severely limited, because Americans are not interested in providing intervention for preventable diseases which are deemed to be the fault of reckless or morally unacceptable behavior).

Fibromyalgia is, I think, another great example of how Americans cannot deal with medical conditions when they cannot attribute fault or find a causative agent, bundled in with some serious sexism. Although it affects all genders, it is often assumed to be a specifically “female complaint,” and it’s laden with the double burden of being a “faker’s disease” in the eyes of the American public. Who are apparently incredibly knowledgeable about medical issues, especially treatment options, judging from the ever-helpful advice they provide people with all the time. When you can’t point to a causative agent of a condition, people are less likely to accept that the condition actually exists. Even when they are confronted with people who are obviously experiencing that condition.

Mental illness also falls into this category. Because we can’t point to something on a microscope slide, mental illness is assumed, on some level, to be fake or not real. And people with mental illness are assumed to be, in some part, responsible. They must be faking it, because the alternative explanation is that people can be sick without any clear cause, without any neat treatment or cure, and that is unacceptable.

In order to be an acceptable cause to support, a medical condition must be pure and untainted. Victims cannot in any way, shape, or form be responsible for their condition and the condition must have a clear and obvious cause. Thus, awareness campaigns and research and so forth ignore a panoply of serious medical issues, because they do not meet these criteria.

This means that numerous very serious medical issues in this country go underfunded and underaddressed. When education about issues is limited to issues which are considered blameless, people are missing out. Including people who may be at risk. When funding is limited to no-fault conditions, it means that serious issues are allowed to be ignored, and people with conditions linked with personal responsibility have a hard time getting respect, let alone treatment.

This disproportionately impacts some of the most vulnerable populations, like people of low income, who can exercise little choice when it comes to issues like medical conditions caused by occupational exposure, nutritional deficiency, and living in polluted communities.Like people with disabilities who could actually really benefit from, you know, funding for supportive programs.

The thing is that even conditions which can be clearly attributed to lifestyle choices are still intersectional in nature. Plenty of people smoke and do not get lung cancer, for example, just as plenty of people who do not smoke and do not have any other obvious risk factors in their medical histories do get lung cancer. Yet, the failure to even dedicate a little bit of time (comparatively, I am aware that there is ongoing research into lung cancer and that there are educational campaigns) to funding and awareness means that useful information about these conditions remains undiscovered or undistributed.

I was thinking about this lately during the flurry of outrage over domestic violence being listed as a preexisting condition. Domestic violence is another thing which is linked with some sort of personal fault or action on the part of victims. Where’s the outrage about numerous other things being listed as preexisting conditions? Why aren’t we angry about the fact that basically any medical issue/medical history under the Sun is considered a preexisting condition? The very idea of a preexisting condition is exclusionary and repulsive and disgusting.

It doesn’t matter how, why, when, or where the origins of a medical condition or disability lie. What matters is providing the appropriate intervention. To say this, however, is to undermine one of the cornerstones of the American belief system, which is why you so rarely hear it said in the mainstream.

Cross posted on this ain’t livin’