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[cancer] A few thoughts on being seriously ill, with reference to privilege - Lakeshore
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Jay Lake
Date: 2012-08-23 04:29
Subject: [cancer] A few thoughts on being seriously ill, with reference to privilege
Security: Public
Tags:cancer, child, health, personal, work
Two aspects of illness that don't often get discussed or even recognized are social privilege and process complexity. These are things I've commented on before here on the blog, but they're much on my mind again this week.

Social Privilege

I have a well paid white collar job in a technical field. I work at home. In other words, my commute is two dozen steps, and I can sit down all day to perform my job functions. These facts combine to grant me a form of social privilege which has been critical to surviving chemotherapy thus far, and to surviving the next round as well, without total financial ruin. If I had a job that required commuting, or driving while on work hours; if I had a job that required standing up at all; if I had a job that required continuous attention without permitting unscheduled rest breaks; I would never have been able to handle things as well as I have.

Most people, well or sick, do not have jobs this convenient. This is a profound form of social privilege from which I benefit immensely. The fact that I even had the opportunity to achieve this position is itself part of being white, male, relatively tall, well-spoken and well-educated. Everything from the circumstances of my birth to the accidents of my employment history have combined to allow me to reach this point.

I am profoundly thankful for this.

Process Complexity

As for process complexity, I have to say that the three most ferociously complicated things I've ever done in my life in terms of paperwork, nitpicky requirements, tight deadlines and unexpected interdependencies are adopting [info]the_child, buying real estate, and being seriously ill.

When you fall seriously ill, the amount of paperwork and compliance in your life skyrockets. In the name of resource allocation, financial prudence and fraud prevention, American society forces an incredible burden upon its least able members. You truly have no idea how complicated this gets until you have experienced it yourself. It's a disastrous piece of social engineering that is just one more layer of punishment upon people already experiencing some of the worst moments of their lives, when they are the least capable of coping with the unexpected extra workload. A truly just and compassionate society would provide the reverse — an uncomplicated refuge of safety and healing not fenced in by reams of paperwork and arbitrary deadlines. Not to be in our America, unfortunately.

Note that I say the above as someone who is both highly competent at paperwork, and covered by good health insurance (at least in the American context of "good coverage"). This not even to reference the staggering financial burden that I must endure with my good insurance. Another privilege for me; that I'm capable of managing this, and have close friends and family to do it for me if I fall too ill to keep up.

Speaking of process complexity, I'm meeting with my attorney right before I go into chemotherapy, to deal with some open items in my estate planning and so forth while I'm still inarguably competent in the legal sense of the term. Oh, the things I have to think about right now.

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Larry Sanderson
User: lsanderson
Date: 2012-08-23 11:47 (UTC)
Subject: Thank Ghod!
You don't have to deal with that evil British system where they reimburse you for traveling expense to get to hospital!
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Jay Lake
User: jaylake
Date: 2012-08-23 11:54 (UTC)
Subject: Re: Thank Ghod!
Yes, the evils of socialized medicine would poison my soul. Easy access, support for lost income, paid time off, not spending up to $200 a week on co-pays. How can the British stand it?
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Dichroic
User: dichroic
Date: 2012-08-23 13:56 (UTC)
Subject: Re: Thank Ghod!
Actually in my experience (three countries: US, Taiwan and the Netherlands), US coverage is as good as anyone's IF you have coverage (and, OK, excluding the copays). The problem is that so many people don't have and can't get covered, and that it's too easy to lose your coverage.

While you have it, medical care in the US is quite good in general. (The other systems do have their flaws, but I don't know anyone who has them who would trade for the precariousness of US coverage.)
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a_cubed
User: a_cubed
Date: 2012-08-24 01:41 (UTC)
Subject: Re: Thank Ghod!
Even when you have coverage there seems to have been a strange change. Perhaps it's just with dental care (which is not well-covered in the UK or Japan, the places of which I have experience). See King Kevin for an example.
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cathshaffer
User: cathshaffer
Date: 2012-08-23 13:32 (UTC)
Subject: (no subject)
So true. And also being white, male, and nominally upper middle class gives you the privilege of multiple tries at paperwork if you get it wrong, extra time and help from professionals, and the benefit of the doubt if you make a mistake. My mother's experience as a disabled person living on SSI and navigating the health system as a Medicaid patient was full of pointlessly punitive rules and sometimes outright cruelty. We were able to find good help, but we had to dodge a lot of petty tyrants along the way. No one could get the kind of help my mother needed alone. They wouldn't know where to begin. And social workers are flooded with hundreds of clients who all need that kind of help. :-(

You're right, we should just take care of people who are seriously ill. Any civilized society would. Any of us could get cancer, and each and every one of us would want and expect to be cared for in our misfortune. Occasionally I hear a "man on the street" interview with one of those people who think that the ACA is taking away our god-given right not to have health insurance, and those people always have an immortality complex. I heard one just the other day rationalizing that he comes from a very healthy family, no health problems in his family, as if that meant fuck-all about your chances of becoming ill.
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mcjulie
User: mcjulie
Date: 2012-08-23 15:50 (UTC)
Subject: (no subject)
You're right, we should just take care of people who are seriously ill. Any civilized society would.

Just thought it needed repeating.

Our current system is a great and perverse evil. I find it hard to understand how anyone with a conscience or a shred of empathy could support it.
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cathshaffer
User: cathshaffer
Date: 2012-08-23 15:55 (UTC)
Subject: (no subject)
Let me share something horrible. After my mother died, I got a bill from the state asking me to pay all of her nursing home charges out of her estate. It turns out that in the late 90's, Michigan passed a law that any long term care expenses paid by medicaid for disabled people under 65 had to be paid back out of any assets they left behind. By definition, that means their home or car, since no one can receive Medicaid in Michigan while in possession of cash or other material assets over $2000. So it turns out that those benefits are a "loan" to be paid back after they die by selling any property that otherwise would have gone to their heirs. If the heirs are also disabled, they get a bye until they die, and then the state will take the house anyway.
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cathshaffer
User: cathshaffer
Date: 2012-08-23 15:55 (UTC)
Subject: (no subject)
(Mom had no assets. On the form, I carefully described the possessions she left, including a book shelf and some clothing, and invited them to collect. They declined.)
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mcjulie
User: mcjulie
Date: 2012-08-23 17:18 (UTC)
Subject: (no subject)
... words fail ...
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cathshaffer
User: cathshaffer
Date: 2012-08-23 17:21 (UTC)
Subject: (no subject)
It's evil. Pure and simple. I've wracked my brain as to why the legislature felt that people over 65 are entitled to long term care, but those under 65 have to pay it back. All I can come up with is hatred of disabled people. There's no other explanation.
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Kari Sperring
User: la_marquise_de_
Date: 2012-08-23 14:58 (UTC)
Subject: (no subject)
There is something deeply broken about a system where access to health varies according to personal wealth and privilege. Broken and, frankly immoral.
Our Lords And Masters (aka the right wing Tory scum and their fellow travellers) are trying to impose this on us, too.
It's indefensible.
Nails red flag to mast.
Kari xxx
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threeoutside
User: threeoutside
Date: 2012-08-23 15:50 (UTC)
Subject: (no subject)
I concur 100% with your comments on both subjects. On the savage cruelty of the American health care system paperwork and bureaucracy, I have experienced it twice, once on behalf of my mother, and again through my husband's last four and a half months of life. I cannot IMAGINE how the majority of people have any chance in hell of coping with the paperwork. I was a career state bureaucrat well accustomed to both sides of the paperwork mountain, and it damn near ruined my own health coping with it.

I'm glad you have the support system you have; I just wish everyone did.
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shelly_rae
User: shelly_rae
Date: 2012-08-23 17:48 (UTC)
Subject: (no subject)
I've got health insurance but couldn't work during my recovery or illnesses. I still don't understand insurance and have received yet another collections notice for medical bills. My credit rating has gone from golden to deadbeat. But I think all those issues are insurance related. The care I've gotten has been excellent. Recovery has been better than thought, although I'll be taking meds all my life at least I can do stuff.

That said. I'd like to enjoy what time I have. But I must work to keep that health insurance. I'm afraid to change jobs and loose that or the support the company gives me when I can't work, so I'm stuck. I know it's a privilege to work for a company that cares but it'll never be more than a cheap apartment, used car (if that), lifestyle. That's ok, I guess. But it feels like so much has been stolen from me. I used to be so much more....</p>

The making arrangements is hard and thinking about mortality is a bummer but it's what everyone with any responsibility for others should do--with or without illness. good on you for taking care of this now.

Good luck at John Hopkins. Be well.
Anon

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a_cubed
User: a_cubed
Date: 2012-08-24 01:45 (UTC)
Subject: (no subject)
This is what boggles me about the US system, that once one becomes ill, that's it, suddenly one is locked into one's current position. If you get ill between coverage, you're completely and utterly screwed. Other systems have their flaws but this one strikes me as so evil as to be incomprehensible that anyone could defend it in any way.
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martianmooncrab
User: martianmooncrab
Date: 2012-08-23 20:14 (UTC)
Subject: (no subject)
I did my cousin's paperwork for him after his stroke, and here 2 years later, he is well enough I am backing out of his legal life. He couldnt have done any of it by himself, he couldnt even read.
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