Amandaw has a superb post up at Three Rivers Blog: Second Shift for the Sick.
She describes the energy and time requirements for someone who is sick or has a disability, in terms of what it takes to keep an income flowing, obtain healthcare and medication, monitor and try to correct other people’s mistakes, and access the world. This post hits me where I live.
[…] 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. […]
Categories: health, social justice
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It’s entirely true. I’m a highly literate person who has experience with bureaucracy and administrative run-arounds, but when I had cancer and had to depend on Centrelink, it was honestly a job in itself. Certainly more than I could handle, especially also dealing with Medicare (who were actually pretty clear and helpful, but I was complicated and time-consuming!) Despite undergoing cancer treatment at the time, more than a third of my doctor’s appointments were for Centrelink requirements, not for my health – and if I lived where I live now, without a bulk-billing clinic, these visits would have left me $15 out of pocket every time.
I took a part-time job earlier than I should have just so I could stop dealing with Centrelink. And then they kept paying me for several months after I filled out all the forms to make them stop – it was direct debit so I didn’t realise, and the first I knew about it was a third and final demand for immediate repayment or they’d take me to court! I cannot imagine having to negotiate that system with kids in tow, or a complex family situation, or being itinerant (they were obsessed with where I lived), or not having post-grad level English language skills to deal with their constant efforts to stop paying me – at least until I asked them to stop paying me! I was never mistreated by any individual Centrelink staff member – indeed, they were perfectly polite and helpful – but each person contradicted the last, and every time I thought I had completed something, another letter would come to tell me to do it all over again.
It really is a second shift, and so much of it is entirely unnecessary. I’m very glad I don’t live in America where I would have had to deal with insurance companies (or lack thereof) on top of the above.
This post hits me where I live.
You and me both. 8-(
I know that the various contributing departments know that this is a problem, and would like to work on it. But solutions aren’t easy – many of the most stupid things are mandated by law.
Thanks much for the link. It’s a subject that has been sitting on my mind for some time, and I don’t think the post was wholly coherent — it was a mishmash of emotional reactions, including the second shift, strength/weakness, and the dignity and humanity of being allowed anger/fear/sadness/etc. without having to dismiss it with a smile. I’d *love* to see more people write on the subject(s) — the last in particular is applicable to just about any oppressed group, but it came pouring out in this context … it is good to see that others identify, anyway (in that “it’s not good you have to go through it, but” way). It is so hard to put these things in to words, because you experience them individually, privately, away from the community, so no one else ever really sees it. And it is an experience that is so fundamental to your existence that it is hard to elaborate on why it is, why it is a problem, what it is that makes it bad, what the actual effects are, etc. It has been heartening, every time I reach deep down inside to try to write about those experiences, to see that I am writing about something others recognize. It is heartening because maybe if we put a word to it, we can begin to fix it.
When my sister had cancer my mother looked at all the forms for carers payments, after thirty years experience as a hospital social worker filling in Centrelink forms and so on for other people, and it was all so hard she wondered if she should bother. In the end, despite the very very small payment involved, she decided to apply and make them pay on principle. They really shouldn’t get to save money by making it hard.
I had thought that all payments through the government would inevitably involve this inefficiency and inconsistency, but then I started receiving Family Assistance, which is a doddle. There are no long queues, they answer questions consistently, you can get through on the phone, and the forms are pretty easy. I can only conclude it’s because the government chooses to punish sick and unemployed people, while they are happy to facilitate middle class welfare to everyone else.
You certainly notice a difference in gov’t offices depending upon their setting. Services for the poor, the sick, minorities, etc. tend to be chaotic, disorganized, ineffectual. Services for the privileged tend to be well funded, well staffed, etc…
This has been made obvious to me as I’ve interviewed for a civil service position in no less than ten agencies (state and county) — it’s the same position across each agency, but it varies so wildly, whether the place is clean and professional and well tended, or whether it is dank and depressing and messy and frustrating. And the correlation seems to be — guess what — wealth and whiteness.
That said, in response to Graeme — one of the frustrating things about these injustices is that many are unavoidable. Some things are honest human error; some things are institutional flaws that are almost impossible to do away with, even in a more fair, just society… almost definitionally, the disabled are GOING to face some amount of resistance, some amount more than the fully-abled, as they move through society. But — just like there are biological differences between the sexes, but those don’t and shouldn’t account for the large social difference — there is far, far more resistance than need be. And I think the best way to reduce it wouldn’t even necessarily be structural changes (tho’ those are SORELY needed) but a change in culture — a sense of obligation to one’s peers, an attentiveness to their needs when they have them. We could see a prescription refill for Mr. Robert and say “This is IMPORTANT, and I cannot let it slide” — or we can view it as yet another request, sigh, yawn, whatever — and inevitably, it will slide, even if you don’t really intend it to.
Not sure if this is all making sense, but I tried. 🙂
And the situation is intimate to me on both sides; I am disabled myself, but am also seeking employment in many of the agencies which have been my very reluctant and resistant allies in life. My husband works with the welfare office, so I get to see (secondhand) what it is like on t’other side as well. I know, and have always known, that it’s not like my Medicare Advantage plan had it out for me, or that my case worker takes pleasure in seeing me suffer, or any such thing. This doesn’t make it any less frustrating every month that rolls around where my prescriptions are running out and there is yet a new problem in refilling them. The problems I face in the immediate term are just as bad whether the workers involved held any malice or not. And even for the less-immediate problems, they still affect my life whether or not there is any sympathy for my case in their heart. Thus my complaints are not (unless they do show malice or malicious neglect) about the people involved as much as the societal structure and cultural attitudes that make these things happen.
Ironically I’m sitting in a meeting discussing this very issue right now. And patient’s extreme reluctance to yield control over their data and accept things like the Australia card is a big contribution to the problem.
How convenient to be able to blame sick people for their own accessibility problems!
Grahame – I’ll be happy to “yield” my data when I know that it will be used correctly, appropriately and to help rather than punish and restrict me. Nothing I’ve seen in Centrelink administration makes me think this is a possibility. I work in pharmacy and have a great deal of contact with Medicare and there certainly are areas where there could be more communication and information sharing. Then again, a lot of those are to the benefit of workers like me, not to the patient – and it’s not hard to ask the patient’s permission. It’s a lot harder when it’s made compulsory. For example, to sell schedule 2 and 3 pharmacy medication we need to ask some health questions to make sure it’s being used appropriately and safely. Contrast people’s behaviour when they are given “health advice” as opposed to “we have to ask these questions”, even if the same questions are asked. A patient-centred, thoughtful approach yields far better results than an appeal to bureaucracy.
As I noted on the original post, this gives me some (frankly, needed) context for the POV of those with disabilities, but it also speaks fairly true for my experiences with what might be called ‘manageable’ mental illness. It helped things click. Thanks for the link.
Lauredhel : How convenient to be able to blame sick people for their own accessibility problems!
You severely misunderstand the people who choose to work in healthcare in spite of the fact they could earn more money elsewhere
lilacsigil: I’ll be happy to “yield” my data when I know that it will be used correctly, appropriately and to help rather than punish and restrict me
yeah. You’ve hit the nail on the head. This is why we are so sensitive to the issue – because healthcare workers are perfectly aware of all these problems.
Grahame – you don’t know what field Lauredhel works in, so perhaps be a little careful with the snappy comments? I don’t think she does misunderstand people who choose to work in healthcare, but I know she does understand being a recipient of services offered by healthcare workers.
My concern is not only that, like lilacsigil, the data won’t be used properly, but also that it is one of those things that people get convinced that they need, a great deal of trouble is gone to get it, and then they find that the situation hasn’t changed at all. Maybe some thinking outside the square could help?
I really, really, really don’t.
And I’ve gone to significant (unpaid) efforts in the past on to block intrusive fishing-expedition privacy invasions from private and public authorities. People resist privacy invasions for very good reasons. Being sick doesn’t and shouldn’t give government, industry, and lawyers carte blanche to pry into stuff that’s none of their business.
Mindy – yes, I can’t see what the benefits are to the people whose information is being used, but I can clearly see what the benefits are to those (like me) in the health bureaucracy! It would be very easy to convince many people in the health system that more access to information would be an awesome thing. Strict confidentiality laws don’t stop abuses, either.
hmmm
well,
> How convenient to be able to blame sick people for their own accessibility problems!
so I said that this was a misunderstanding, and got this:
> so perhaps be a little careful with the snappy comments
well, I think I was less snappy than the comment I was responding to 😦
The general discussion illustrates my point well: some of the second shift is pointless repetition. But we can only do away with the pointless repetition by sharing data better. But sharing data better raises a greater potential for abuse, which we’re all concerned about. So it doesn’t happen.
As for thinking outside the box, let’s do that. Ideas welcome…. because I haven’t got any right now. But something to remember: in healthcare, we eat our own dog food (that’s actually an IT reference, but the point is: people that work in the healthcare system use the healthcare system as well)
Grahame, here is what you don’t seem to understand.
It’s not about you.
Maybe if you’d stop thinking about yourself for a moment, you’d understand the point of the post.
I’m not sure if you meant this as an olive branch, but what you actually said was:
which made all sorts of assumptions about me, my background, and my experience that are untrue.
Listen to amandaw; she speaks the truth. And I’d estimate the amount of my second shift that is constituted by pointless repetition and that could be done away with by increased data-sharing-related privacy violation at approximately zero.
What is so frustrating about this argument, too, is that this is always how it goes. Pwd get told:
* We are noble and honorable people for deigning to concern ourselves with your kind, and you should be grateful that we’re here to berate and badger you into our “care”
(reminiscent of what domestic abuse victims are told by their abusers, anyone? i’m the only one who really loves you, you’re lucky i bother with your worthless ass, you should be grateful for everything i do for you…)
* It’s our faults anyway; we make these unreasonable demands (for privacy, for respect, for participation in decisions about our own care, for further effort when a treatment/dx does not do what we were wanting it to, to be talked to directly, to have things explained in a way we find satisfactory…) and that makes things such a pain for our providers, dontchaknow, so any obstacles we face are ultimately our own doing
* We are hopeless anyhow; this is just The Way Things Are; of course disability, illness or impairment mean you are doomed to a life of fighting, and there is nothing we can do about it, so —
* — stop whining about it, don’t be so upset/angry/disappointed, don’t complain, don’t presume your concerns deserve to be heard and addressed, especially because —
* — it just makes us (you know, the healthy folk) less likely to want to help you anyway. It hurts our feelings, ‘n stuff. Flies, honey, vinegar, QED.
So yeah, all you sick people. Just learn to STFU, take what you are given with a smile, and never, ever complain, because you’re lucky you’re already getting what you’ve got.
amandaw: *applause*
Add a side serve of “you couldn’t possibly understand, dear”. Can I have hot fudge with that?
Amandaw, you said it so right.
Everyone should remember that programs are there to help make people’s lives better in some way. If it’s making people’s lives difficult, depressing or infuriating then the program has failed, whatever service it purports to deliver or actually delivers. If it makes the recipient feel like they are worth less than the person delivering the service, the program has failed. There is no place for the sort of disrespect that tells a patient ‘your time is worthless, your effort and work are worthless, you are worthless’. It’s unacceptable, but it’s how many (by no means all) services are run.