Tag Archives: chronic pain conditions

Television & Disability: Joan of Arcadia

media and pop culture, , , , ,

This post is part of a series about representations of disability in movies, television shows, and books. They contain spoilers.

[Originally Published in April 2009]

Don and I started watching Joan of Arcadia this week.

Basically, it’s a story about a teen, Joan, who starts to get missions and messages from God, for some mysterious purpose. She’s the middle child of three, with a younger brother, Luke, who is very smart and ignored by his parents, and an older brother, Kevin. Kevin was the golden child, destined to go to uni on a baseball scholarship, before a car accident left him paraplegic 18 months before the show’s start.

Unlike every other show we’ve rented and mainlined, we’re watching this show very slowly because the family dynamics around Kevin’s disability ring painfully true to life.
Continue reading Television & Disability: Joan of Arcadia →

Outrageous pre-existing conditions

accessibility, blaming, feminism, intersectionality, justice, medical practice, social attitudes, , , , , , , , , , , , , , , , , , , , ,

(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.

Where I jump in and defend pills…

autonomy, shaming, , ,

Moderatrix note: This post is the love child of my coming to terms with a need and actual want of pills.

Several brightly colored jelly beans lie on a jade look table surrounding several different pills. In the background are pharmacy bottles and a multi-colored pill reminder.
Several brightly colored jelly beans lie on a jade look table surrounding several different pills. In the background are pharmacy bottles and a multi-colored pill reminder.

When discussions arise of disability, especially, it seems, of invisible disabilities, someone will almost always jump in and start harping about Big Pharma and how they have certainly invented our illness or disorder just to sell us or get us hooked on some new fancy drug.  Or, they will insist that we are just addicts who refuse to find ways to manage our pain.

And for some of us it is a type of shaming that is hard to get out of our heads.  For me, personally, I have let not just that, but some people actually convince me that pills were so bad that sometimes I convince myself that I can manage my life without them.  It usually takes a significant event (which I will leave out of this little anecdote b/c someone that I know reads this blog thinks these things are his business, but I assure you, they are not) to remind me and make me realize that I not only need them, but that it is in my, and my family’s best interest for me to use them.

I saw a doctor recently who took the time to have a real conversation with me about my health, my Fibro and my care.  It was incredible and refreshing.  She gently insisted and reminded me that I need to take some medications, and together we decided that, yes, some of them don’t hinder me, but actually give me parts of my life back.  That while addiction and dependency are different things, real concerns, and things to consider, they are things that we need to weigh against the benefits of taking medications.  She took the time to discuss side effects, interactions, whether I would need to take multi-vitamins, that I would need to watch my calcium intake (to avoid getting stones), and discussed lifestyle changes that I have either already made or would need to make to improve my quality of life, and that of my family’s.  This is the kind of thing that needs to happen between pain patients, chronic illness patients, and pretty much any patient who needs to take medications and their doctors. Continue reading Where I jump in and defend pills… →

Lucky for us, there’s money to be thrown

accessibility, , ,

One of the many, many things that bothers me about disability & accessibility is how many of the problems can be solved by throwing money at them.

Let me just give the simplest, bare bones problem that’s on my mind this month.

Once a week, Don attends an appointment that is on the other side of the city from us. He has three possible ways of getting there.

First, he can take public transit. There is one bus from our neighbourhood that gets to where he has to go. (This is an improvement – the bus he takes “directly” only recently became wheelchair accessible.) As anyone with a chronic pain condition will tell you, though, taking the bus anywhere can be extremely painful. The bus drops him off a few blocks from where he needs to be, and he “just” has to navigate the non-existent curb cuts and the broken side walks. Then he gets to reverse the whole process, except the return trip is during rush hour, and wow do people get really pissy when a full-time wheelchair user needs a bus during rush hour.

Second, he can attempt to book Access-A-Bus. In our city, Access-A-Bus must be booked a week in advance. Not 8 days in advance, not 6 days in advance, just seven days in advance. You are not guaranteed a space if there are too many people that day. You will get a phone call two days beforehand if you’re going to be on the bus. You have no control over the return trip, other than that there will be one, and you should let them know when you’ll be available. Although Access-A-Bus is free for users, it’s not the most effective way of getting around.

The third option is that Don takes a taxi. It costs about 25$ one way. The taxi can be pre-booked on either end. It usually comes on time. It takes him exactly where he wants to go, drops him off at the door, and picks him back up at the same location. It just blows through a large-ish wad of cash every time.

Don takes a taxi to this appointment a lot. Unlike a lot of people with disabilities, we have access to family financial support. We can afford that 50$ to make sure Don can get to his appointment on time and in a relative degree of comfort.

For other people we know, the options are much smaller: Be in large amounts of pain while trying to get around the city, or don’t go out at all. (Buying a car is also a “throw money at it” solution. It also assumes you can drive, and have a place to put a car.)

People with disabilities are disproportionately poor. Many also have monthly costs that add up pretty quickly, like medications, purchase and repair of mobility aids, doctor’s appointments, etc. They may need to pay interpreters. Some of them have dietary restrictions or food allergies that require “special” food items, like wheat-free flour or lactose-free milk. A lot are no where near as financially privileged as Don and I are, and cannot afford the expense of a pain-limited trip to the doctor.

A well-funded, well-advertised Access-a-Bus program, along with funding increases to ensure that all buses are wheelchair accessible can make such a difference. But that is not the financial priority of my city at the moment. (Apparently, it’s a high-speed ferry of some sort, and a new hockey arena.)

So, instead, aiming to keep Don’s pain levels as low as possible (he’s recovering from surgery at the moment), we throw money at the problem. And thank our lucky stars that there’s money to be thrown at it.

So many others are not nearly so lucky.