Tag Archives: this is not helpful

Reactions, part two: Social aspects

In my last post, I talked about the painful physical process of the near-fatal allergic reactions that I’ve been having since the age of 14. In this post, I want to address the aspect of these “attacks” that is, in some ways, crappier than the actual attacks: peoples’ reactions.

Often when I mention that I am allergic to certain foods — when I am, for example, meeting people for the first time in a situation where there is food, and where these issues may come up — I do not mention that my allergies are potentially life-threatening, as I’ve learned my lesson from some of the past responses of certain acquaintances:

“So you could die from eating peanuts? I’ve never heard of that.”

“I knew this kid who was allergic to [food], and he almost died.”

“Whoa, if I couldn’t have [food], I would, like, die/miss it soooooo much. Do you miss [food]?”

“Peanut allergies are so over-diagnosed! Parents these days are way too overprotective of their kids.” (Hilariously enough, this one gets trotted out in regards to some other disabilities/health conditions as well.)

“Are you sure you’re allergic? It could have just been a one-time thing.”

“How much of [food] could you eat before you’d have to go to the hospital?”

It could be that some of these folks are just trying to make conversation (particularly in the second and very last examples), but most of these responses have left me either totally baffled or itching to make some sort of snappy comeback. Because I am a fairly polite person in my day-to-day life (no, really!), the times that I have made snarky comments in response have been relatively few. While the disability activist part of me firmly believes that I have zero imperative to politely respond to cluelessness about something that could kill me (and almost has), my own social programming tends to stop me from doing or saying anything rash. The thing I resent, though, is that sometimes I am treated like a human “learning experience” of sorts — some people, once they find out about this health condition of mine, become convinced that they can bounce their conspiracy theories about how all peanut allergies are caused by anxious parents off of me, or delight me with anecdotes about this kid they know who was allergic to, like, everything and was in the hospital for a month this one time. Or perhaps they get really bad hay fever in the springtime, and they are just so excited to find someone who knows how annoying and awful allergies can be!

Somewhat ironically, the most heinous unsolicited comment on my reactions that I ever got was from a friend of my mom’s, who had known my family for a very long time. This woman was of the ardently “spiritual” sort — this is not, in itself, a bad thing, but in her case, parts of it happened to translate into a long-standing belief in the universal applicability of “alternative” medicine and mind-body integrative healing. One afternoon, this person phoned my mom in an utter panic, convinced that she knew the reason for my scary and bewildering allergy attacks. She had a piece of proof that no medical science person could possibly have:

“Anna is faking her allergy attacks to manipulate and control you!”

This is not something that anyone, particularly an already-frightened 16 year-old who has no idea why she still gets these attacks spontaneously, should have to hear. My mom, to her credit, excused herself from the conversation with this person, and then told me about what had happened — adding that should this person call back, I did not have to speak to her if I did not want to. (Which I did not, for the record.)

In that interaction lies one of the most crucial issues regarding the way many people with disabilities are treated: Those of us with potentially life-threatening health conditions are never to be trusted. Those of us with chronic health conditions are never to be trusted. Those of us with disabilities must be faking it to get attention, to gain the upper hand in whatever way we can. We must be using our conditions as excuses to get pity from those close to us, or from anyone, really. We must be faking — things can’t really be that bad. That dire. That frightening to us and those who are close to us. Those of us without “objective” proof are constantly suspect, constantly under scrutiny from nondisabled people (at times, even from other people with disabilities); a similar process is at work even for those who do have “objective,” concrete proof of their disabilities or conditions. Are you sure you’re allergic? You could eat peanuts if you really wanted to, right? She’s just acting like that for attention. She’s just using it as a get-out-of-[whatever]-free card. Well, I’VE never heard of that! Are you sure it’s not just psychological? I knew this one guy. . .

That burden of proof has always been on those of us with disabilities and/or health conditions. And sometimes, it’s a burden that feels almost unbearably heavy. No matter how scary the condition you deal with can be, someone always has a question about it, or a theory, or wants to try a misguided attempt at solidarity. Well, you may be thinking, would you rather not have people react at all, since you’re complaining about it so much?

What I would rather have happen is for people who do not have my condition or similar health problems to recognize that, for once, they may not be the experts on something that they have never experienced, or that I do not have any sort of “ulterior motive” simply by having a health condition that just happened to come out of nowhere, or that I may have heard the “do you miss eating [food]?” question countless times. Or that I have a lived experience that is just that — my experience — and that it is different from theirs. For me, simply having that be okay — in other words, not subject to constant monitoring, anecdotes, questions, guessing at motives, trying to find “common ground” based on a pretty uncommon issue  — would be enough.

On Cure Evangelism

Note: This post was written primarily with nondisabled readers in mind.

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’)