Cure evangelism is a scourge which seems unlikely to vanish any time soon, so we may as well address it and have a little chat about what it is, why it is problematic, and what you, personally, can do about it. This is not just a problem which affects people with disabilities. Fat folks are often subjected to a form of cure evangelism from people who believe that fat is something which needs to be (and can be) cured, for example, and anyone who has ever experienced temporary disability or illness can probably think of a few examples of cure evangelism which they have experienced.

What is cure evangelism?

Put simply, cure evangelism involves aggressively pushing a medical treatment or approach to a medical condition or disability on someone, without that person’s consent, interest, or desire. It takes a lot of different forms; the pregnant woman who is informed that she must have a natural birth and that if she thinks positive enough, it will happen; the cancer patient who is informed that ‘this great herbal supplement’ worked really well for the evangelist’s friend; the asthma patient controlling asthma with acupuncture who is constantly told to start using inhalers; the person with mental illness who is shamed for not taking medications.

In all of these cases, the cure evangelist identifies that someone has a medical issue, the evangelist has an opinion on how to treat that medical issue, and ou feels entitled to share it. Cure evangelism comes from all kinds of people, including people who have shared that experience and people who  have not shared that experience. It all boils down to ‘there’s only one way to handle this situation, and that’s my way.’

Cure evangelism presupposes, of course, that only one treatment for something would be appropriate or necessary. It presupposes that all bodies and issues are identical, which means that experiences can easily be overlaid on each other: ‘if I have asthma, everyone must have asthma like mine.’ At its core, it is about assuming that other people’s bodies belong to us, are subject to our control, and are our business. Indeed, that we have a moral obligation to interfere with what other people do with their bodies. To save them from themselves.

Why is it problematic?

I think that the problematic nature of cure evangelism is multifaceted. There are the issues of bodily autonomy which I covered in the above paragraph, which become especially complicated for women, trans* folks, people of colour, and people with disabilities. Members of all of these groups have historically been treated like property and in some cases are still considered property. And I’m not even talking about the metaphorical sense in this particular case.

When you have been exposed to a culture which regards you as a publicly tradeable commodity, exercising control and autonomy become especially paramount. Being able to make decisions for yourself and your own body without the approval or consent of others is part of taking control of yourself and your identity. Thus, when people in these groups are informed that they must do something, it comes from a very entrenched culture of ownership. The person speaking often has privilege, and is exercising that privilege thoughtlessly. Many people claim to be well meaning, say that they just want people to be informed, but this presupposes that people are not informed on their own and that, moreover, it is only possible to reach one informed choice.

Another facet of cure evangelism is that it is, quite frankly, annoying. People present these things as though they are new and different and no one has ever brought them up before when in fact nothing could be further from the truth. Every single time someone approaches me with a new act of cure evangelism, it’s always to tell me about something which I am already well aware of. In some cases, it might be something I am already doing. Or something which I did which did not work. Or something which I explored but decided was not for me.

When a cure evangelist is cornering me and telling me to do this or that, it puts me in a bad place. Rejection is taken as rude, so I can’t just get out of the conversation. I don’t really feel like discussing my body with other people, let alone how I take care of it, and I’m not really interested in saying ‘yes, I’m actually already doing that’ or discussing any aspect of my treatment plans with someone who is not part of my treatment. It’s a personal matter.

What you, personally, can do about it.

Don’t do it.

It’s that simple. If someone chooses to share the fact that ou is disabled, or sick, or temporarily injured with you, don’t evangelise. Now, if someone explicitly asks you for advice and suggestions, by all means, do so. But don’t do it in a pushy way. Make it clear that these are things you know from your own experience, but that mileage may vary.

When someone chooses to talk to you about ou treatment, listen. Don’t comment. Don’t judge. If that person is doing something which you disagree with, remember that it’s about ou body and ou choices. Imposing your values accomplishes nothing. If someone asks for your opinion, offer it. But, again, don’t be pushy about it. People are engaging in an act of faith and trust when they share that with you; don’t violate that.

If you feel that you have information which is simply critical, instead of volunteering it, say that you have information/advice and it’s available if that person is interested. If that person says no, respect that.

And when people are having conversations in their own community; as for example when people with disabilities are having an open thread about an issue which pertains to them, don’t butt in if you aren’t part of that community. Feel free to watch and take information away, but don’t add your two cents. The people in that conversation don’t want to hear about your relative/friend. They are talking about their experiences.

And, let me tell you, when a friend who shares a disability with me says ‘hey, guess what,’ I listen and pay attention, because it is offered respectfully and with love and from a place of shared experience. And sometimes I say things like ‘hey, I am thinking about changing medications, does anyone have experience with [medication]?’ and people who actually have experience talk to me, and I learn things, and it is good. These situations are not cure evangelism, though. They are about connecting in a place of shared experience and sharing mutually beneficial information.

(Originally published at this ain’t livin’)

©2012 FWD/Forward. All Rights Reserved.

I recently finished Uglies, which isn’t about disability, but does have some themes which I think are disability related, which I used as a justification for writing about it here because I think it’s a really interesting book and it touches upon some intriguing themes and material. It’s actually the first in a series, as I learned when I got to the end and was like “but what happens next?!” and then saw the bit advertising the next book in the series.

The world of Uglies is one in which everyone is surgically altered at 16 to look more or less the same. To look, in fact, “pretty.” This homogenised society is supposed to be less filled with strife and argument because everyone is beautiful and has also had the experience of being “ugly,” and the logic of the modifications is very much based in evolutionary psychology; people are modified to be highly symmetrical and to appear “vulnerable” and so forth.

When the story opens, we are introduced to the lead character while she is still an “Ugly” and eagerly looking forward to the surgery. But she meets another character who introduces her to an alternative: Running away to join a community of people who do not undergo modification. This character, Shay, is very opposed to the very idea of modification, even repulsed by it. Our hero just wants to be pretty and go to all the pretty parties and is very resistant to the whole idea.

As a reader, I immediately felt a parallel here with cure evangelism. In the society we live in, it is assumed that everyone wants to be cured and in fact cures are forced upon us, just like the surgery in Uglies. “It’s for your own good,” the argument goes, and ample arguments are mustered to show you how terrible things will be if you are not cured. In Uglies, children are taught from birth that the worst thing in the world is to be “ugly” and they are presented with “Pretties” as models of perfection.

The “Uglies” give each other nicknames based on supposedly ugly aspects of their bodies. They bodyshame themselves and each other and eagerly look forward to the time when they will be “Pretties.” Once Prettified, people are modified later into Middle Pretties, once they reach adulthood and start working, and then again as they transition into old age, but naturally aged people don’t exist. A society of perfection is hardly a new thing in science fiction, but it’s still interesting to see how different authors play with the concept.

One of the great parts of the book is one in which some sly arguments against evolutionary psychology are presented. Our lead character, Tally, insists that she’s genetically programmed to like the Pretties and that it’s just natural, and one of the characters who  has chosen not to be modified is highly skeptical. As she’s arguing with him, she starts to realize that his unchanged body actually has some appeal of its own despite the fact that he is an “Ugly.” He points out that she’s been taught and trained to hate herself and that her “Ugly” body is actually beautiful in its own right, and she starts to think about how maybe the things she hates about herself are things which will resolve as she gets older and grows into her body.

[Spoilery paragraph!]The big reveal in Uglies is that the surgery doesn’t just modify the body. It also alters the mind. Most people who undergo the surgery are left with  lesions which change their personalities, literally taking parts of themselves away. This, too, reminds me of cure evangelism. It is assumed that a cure holds no costs, that people remain themselves after being cured and thus that everyone should desire to be cured, when in fact this is not the case. The book also points out that some people die during the surgery, just as some people die in medical treatment; these decisions are not without costs.[/spoilery paragraph!]

Uglies unfortunately doesn’t touch upon racial issues very much. I’m hoping that this changes with the series because it seems like an obvious thing to explore in a book series about a society which is homogenised to an extreme degree. Uglies seemed to be leaning in the direction of a whitened world, and I would really like to see some people of colour introduced in later books; the story of this book has parallels with both racial identities and disability, and the erasure of both, along with cultural assumptions about erasure being beneficial or even desirable.

At its root, Uglies is about norming and insisting that everyone fit into that norm, no matter what the cost might be, and having people outside the norm challenge this social attitude. I know that’s something which resonated with me as a reader, and I suspect that the same might hold true for some of you as well.

©2012 FWD/Forward. All Rights Reserved.