"You assume that it's all covered."
It was at the tail end of my interview with the CBC - no, not shameless name dropping, actually relevant to this post. (shameless self-promotional links to two of last week’s interviews at the end of this post). I was chatting with the reporter and cameraman as the equipment was being put back in their respective bags. The discussion was about the ripples of chronic illness and disability, how it goes beyond just medication costs and into things like adaptive equipment and tools, wheelchair repair and automatic door opener repair.
And there is that assumption that it's all covered, at least up here in Canada, land of universal healthcare. Or that it's cheaper, somehow. That people who have health challenges don't have to add financial challenges to their lives, too. Because that's not fair and we like to think ourselves as a fair country. Come to think of it, most of the Western, industrialized nations also like to think of themselves as their countries (exclusion of other countries not based on anything but my ignorance of what goes into their feelings of nationalism).
I wasn't the only one talking about the money this week. RA Guy also wrote about the cost of living with a chronic illness, a cost that is so steep that he can't afford to move back to the US. But it goes beyond the fact that medications, equipment and whatnot aren't covered and right into charging higher prices. As Dave explains in his post about the cost of disability yesterday, if you’re disabled and want to have a bit of a life, the kind of life that might include staying in a hotel room or going to a show, you have less choice and have to pay more.
This is where I started to wonder about the assumption. About why it is possible that people who often more vulnerable than most can be put in a position where they experience financial discrimination and extreme financial hardship without anybody saying much. And I think I’ve found the one of the reasons.
It's because no one talks about money.
When I was asked to be involved in the release of the Health Council of Canada’s latest report, I struggled with my decision to write about the financial aspect. It's not something I've discussed before, despite my goal of emotional honesty on this blog. I've written about some pretty intimate details about my health and my thought processes about disability, RA and pretty much anything related to that, but aside from the occasional joke about being a starving artist, never about the money. Because you don't, do you? Talking about the money is just Not Done, it's not polite. It's not polite to talk about how much you make and it's definitely not within any rules of etiquette to discuss having trouble paying your bills. Because you're supposed to be able to manage financially and if you can't, it's a personal failing and there's a hefty dollop of shame involved in it.
Except that makes no sense at all in the context of having a chronic illness or disability. Not only does your disability affect how much - or whether - you can work, but as both I and RA Guy wrote about on Tuesday, RA is expensive. How much money do you need to earn in order for a monthly bill of $400 worth of medication (for instance) not to have a serious impact on your budget? It doesn't make sense to feel guilty about not being able to manage that or feel shame that you have a debt you can't pay off because of a health condition that is beyond your control. Yet, there they are, both the guilt and the shame.
And that's why I talked about the money. It's why I'm grateful that RA Guy and Dave also chose last week to talk about the money. Because we need to start talking about these unreasonable costs and the impact it has not just on individual lives, but in the larger picture, on the economy and our society. We live in a culture where we are expected to pull ourselves up by the bootstraps and where those who can't are viewed with a certain amount of judgment. I'm not going to start ranting about why that is wrong in general (because someone else did so brilliantly), my argument today is specifically regarding those of us who live with chronic illness and disability.
I believe it is inappropriate, unreasonable and downright discriminatory to apply such expectations - and the judgment that usually follows close on the heels of those expectations - to people who simply cannot go out there and scrub other people’s toilets in order to financially pull themselves up by the bootstraps. Because most of us would do just that. We'd rather be working, but we can't and then what do you do? When the only thing that stands between you and improvement and increased independence is the money that you can't make, Is it fair to be punished financially or jeopardize your health because you can't afford the meds you need?
We must talk about the money. Not talking about the money is what necessitates something like the Hardship Fund. Not talking about the money is what allows our City administration to put the Hardship Fund in danger. Not talking about the money puts people's health in jeopardy - according to the Health Council report, 23% of sick or Canadian had skipped doses are not filled the prescription because of cost. Not talking about the money ends up costing us more because when people don't take their meds, their health suffers and they need to use the health care system more.
We need to talk about the money. We need to take a good, hard look at what we believe should happen in case of serious illness, chronic illness or disability, both from an individual and a social perspective. If we no longer practice putting people on an ice floe when they can't fully take care of themselves, we as a society need to step up. Because if we don't, we may as well start looking for the nearest body of water.
The shameless self-promotion bit: To see/hear my interviews from last week connected to the Health Council of Canada report, the segment with me (and my double chin) on Global News National is here (starts around 12:25). This Thursdays, I was on the John Biggs Show on CJBK Talk Radio. The podcast on that interview is here. Also check out the podcast with Dr. Dennis Kendall - he talked to John after my interview and made a lot of excellent points.