Tag Archives: privacy

No, Not Even the ‘Small Things’ are Okay

I live in a small town, which is something I both love and hate, at varying times. (Ask me how I feel about it this time tomorrow.) One of the consequences of living in a small town is that everyone knows everyone else’s business, or thinks they do, which can amount to the same thing. If you’re, say, disabled and queer, a lot of people will talk about that because they think that’s okay to do, and a variety of colourful and entertaining rumours will circulate as a result.

One thing people around me seem to think is really bizarre is my desire for privacy. I ask that people not talk about my disabilities or my general health with other people, and this is rarely respected. Thus, I hear through circuitous ways about the strange things are people are saying about me, because in the small town game of telephone, someone mentioning that I looked peaked in Harvest Market on Friday will turn into me being taken into the ER in convulsions by Sunday night. You can imagine what happens when people have actual medical information about me.

What people usually say when I say ‘hey, I would really prefer that you not disclose information about my disabilities or my health to third parties’ is ‘oh, but it was just a small thing.’

Except that there is no such thing as a ‘small thing.’ People who know what medications I’m on, for example, could look those medications up and find out what conditions they are commonly used to treat. Thus, someone saying ‘oh, I saw s.e. at the pharmacy the other day picking up some [prescription drug]’ is not disclosing a small thing. That person could be providing highly compromising information, actually, because once people go home and look it up, they encounter a lot of misinformation and they map that over to me. Maybe I’m not even taking the drug for the reasons they find on WebMD, but they’ll decide I have [disorder] without talking to me or asking me for any information (probably in awareness that if I haven’t told them, there’s a reason for it) and since there’s a lot of stigma about it, they’re not going to view me the same way. They won’t interact with me like they used to. They will think I’m unreliable and untrustworthy. Despite years of evidence contradicting these beliefs, that’s how they will start thinking of me.

People in small towns squirrel away information and they revel in having secrets that can be teased out of them. How often do I have conversations with people where they talk about other people and they say ‘well, you know, ever since the diagnosis, she hasn’t been the same’? What they want me to say is ‘ooooh, what diagnosis?!’ Or they want me to say ‘oh yes, I know, she has cancer, it’s so sad.’ What they don’t expect is ‘I’m not really comfortable talking about that when she’s not around, can we talk about something else, please?’ I don’t play the game of secrets and this tends to make me rather unpopular, because I’m not interested in using information about other people as a tool for entertainment, amusement, or simple social advancement.

In a small town, there is no such thing as a small thing. Not when everyone knows each other, not when identifying details are pretty easy to figure out. If a doctor mentions treating a patient with a distinctive tattoo or an unusual name, everyone’s going to know who that person is. The doctor doesn’t have to say ‘I’m treating John Q. Public’ for people to know. Most care practitioners up here are aware of that and they are really careful when it comes to protecting the privacy of their patients, but the same doesn’t extend to people who are not doctors, who can gossip freely amongst each other.

I hear the strangest stories about people, the result of compilations of ‘small things.’ Many of these stories I know to be patently untrue and others are unverifiable unless I talk to the person, which I usually don’t want to do because I often don’t know the person very well and also because if that person hasn’t volunteered this information, it’s not my business. In some cases, very rarely, they are true, but I’m still not interested in discussing them, because, again, not my business. People seem absolutely astounded when I suggest that they stop spreading rumours about people or when I say that I’d really prefer that they not discuss personal medical information involving anyone other than them.

I’ve had people tell me I ‘obviously don’t care about [person]’ for asking them to stop talking about that person’s disabilities or medical conditions. For suggesting that, rather than speculating on the ‘small things’ and what they could mean, breaching privacy, faith, and trust with their supposed ‘friends,’ they shut up.

Dear Imprudence: May I Burden You?

Gentle Readers!

I love advice columns almost as much as s.e. smith, and I especially love ou’s deconstructions of them, so I get pretty stoked when ou passes them along for the rest of us to take a crack at them.

This one comes to the the New York Times’ Social Q’s from a mother who is getting a little bothered by the imposing looks of strangers when they take her daughter out in public:

Our 19-year-old daughter is disabled. She’s ambulatory, but walks with an unusual gait and is cognitively disabled. Wherever we go, people stare at her. Not glance, they stare. Recently we were out to dinner, and the woman at the next table couldn’t take her eyes off her. I wanted to say: “This is not dinner theater, and our daughter is not your entertainment.” But I didn’t. Most times, I just stare back and hope the gawker gets the message. Is there a better way?

Paulette Mann, Rye, N.Y.

I get extremely uncomfortable and irritated with people who can’t manage to be polite and respect the privacy of other people. “Othering” is a concept that riles me pretty good, and othering people based on circumstances beyond their control is right up there on my list of things that will get you “unfriended” or “unfollowed” in a keystroke. Beneath that is treating people with disabilities as if they do not have a right to privacy when they are in public with you. As if their existing in a manner that you find abnormal is somehow negating their right to eat lunch without you staring at them. Or asking them awkward questions about their condition. Or talking about them with your friends as if they aren’t right there.

I can only come close to imagining what Ms. Mann’s emotions must roll through when she wants to protect her daughter. How it must feel to want to shield her from all that uncomfortable awfulness. She is right to react the way she does, and to feel the way she does. Most of us with children want to do whatever is in our power to protect our children while we raise them to independence (or even in this case, possibly she doesn’t live at home and they are just enjoying some time out together). Here, Paulette is asking for advice on how to help with that deflection. People often turn to advice columns because it seems that they have exhausted other avenues. I applaud Paulette, actually, for taking this extra step, because I know how it feels to want to protect your child when it feels as if you can not.

I feel like the response that she received was anything but helpful to the situation that Paulette Mann drew out for us. Let’s have a look:

First off, let me apologize to you and your daughter on behalf of all the Lookie-Loo’s out there. That they don’t mean any harm is beside the point; you shouldn’t have to deal with them.

Well, Philip Galanes starts off OK. He sure got that right! *searches for cookie*

But now I’m going to impose another burden on you (as if your family weren’t shouldering enough of them). The next time you encounter a rude rubbernecker, like the wide-eyed woman in the restaurant, just smile and ask: “Would you like to meet our daughter?”

Yes. That sounds like it is exactly what she wants to do! Paulette Mann wrote to you, saying that she wants people to leave her daughter some privacy, and you want to have her now force her daughter to meet strangers! Here! Shake her hand! Come over to our table, invade her space and maybe you can ever startle her and frighten her by being a stranger! Without knowing more about this young woman, all I can say is that this is terrible advice to give to a mother who is asking for a police way to tell a stranger to piss off while her family is trying to enjoy a nice meal out. Without the Britney Spears following (a woman in another group of people I feel have invaded privacy).

Not to mention, let’s place more burden on a caregiver (because, if I don’t talk about the caregivers someone is going to run in here and call me insensitive). A parent needs another burden, amirite? As if we are not keenly aware of all the burdens we carry as parents. All we are expected to bear as we guide a child to independence. As a parent of a seemingly AB/NT child, I can not begin to understand what it is like to have that extra layer of responsibility raising a child with disabilities, but I can understand parenting from a disabled parent perspective. The pieces are different, but I am willing to bet the energies even out as they fit together similarly. “Impos[ing] another burden” is just what this mother needed, for sure. Smashing advice. Brilliant.

Oops. Was that sarcasm?

My hunch is when they shake her hand, they’ll begin to see her as a human being — with feelings and everything — and not some curiosity. Maybe then they’ll show you some of the respect (and privacy) you deserve.

It’s asking a lot, I know. But it may make a difference.

I don’t know that the best way to demand privacy is to invite others to invade it. I don’t know how that would affect her daughter. I don’t know how that would affect Paulette’s energy stores. I don’t know a how to do proofs on a Geometry test.

What I do know, is that, as a parent, this advice would have really felt hollow and a tad overwhelming. I don’t know that Galanes really had a handle on what he was suggesting. I can not imagine introducing a child to everyone who stares at her, and I can’t imagine that it would be a positive situation. Perhaps I am way off base, and I am willing to admit that if I am wrong. My own Kid would not enjoy that kind of invasion. Without knowing Mann’s daughter I couldn’t say for sure. But I am willing to wager that it isn’t a burden that Galanes had any right to place on her at all.

A special thanks to bzzzzgrrrl for the link to this letter!

Healthy Obligations

Even the President of the United States, it appears, is not free of an obligation to be healthy. Society is even conveniently provided with the means of policing him, in the form of ample news stories about his latest physical. The Guardian had three stories up about it at the same time! A British paper, I would add! I don’t think any American papers cover the Queen’s health in such exhaustive detail.

A quick perusal of front pages and “health” sections at some major newspapers netted (warnings on all of these links for health/food policing, sizeism, ableism, don’t read the comments, &tc.):

Barack Obama’s medical: how does he compare to the rest of us?

Cigarettes and alcohol and Obama

Give the guy a cigarette break

Obama in excellent health, doctor says, but he should quit smoking

Obama’s other health downfall — pie

Desserts to Blame for Obama’s Higher Cholesterol

Spoonfuls of Southern Cooking for Obama

What’s interesting and horrific about all of these stories is that they go well beyond “the President had a physical and was pronounced fit for duty.” They provide explicit and detailed medical information about medications, injuries, his blood pressure and pulse, and recommendations made by his doctor.

Apparently HIPAA does not apply to Presidents.

And apparently Presidents are subject to the health police just like the rest of us. The President should eat less pie! The President should quit smoking! The President should use a different exercise routine! The President should be mocked for eating arugula! All of these things are repeated, with varying degrees of force, in the news articles about his physical. Indeed, many of those articles are being used by their authors to launch little screeds on their own agendas (anti-pie, anti-smoking, exercise prescriptionism, anti-arugula). In the eyes of the media, evidently, the President’s health is not just an object of public consumption, it is a teachable moment packed with moral object lessons.

Here’s what I think about the President’s health: It’s not my business, except in some very special circumstances.

I assume that if the President does have health concerns, he can deal with them privately, and he has the right to do so. I would certainly never dictate what he should or should not do because I am not the President. I am not living in his body. I don’t know what kind of needs his body has, and can’t presume to imagine that I do know. His medical appointments are his own affair. His nutrition is his business. His medications are a personal matter.

There are certain situations in which the President’s health would become a matter of concern to me. If, for example, he was in a coma, that would be something I would like to know, because I have worries about the continuity of government. If something was temporarily preventing him from making sound decisions, I would prefer that he not be holding the nuclear football, but I don’t particularly need to know what might be impairing his judgment. Indeed, I don’t even need to know why other people are temporarily taking over Presidential duties; I just need to know that things are being handled appropriately.

I do not need to know President Obama’s blood pressure. I don’t need to know his cholesterol levels. I don’t need to know about what medications he takes, where his sports injuries are, what he eats and when, or even how tall he is. None of this information is relevant to being the President of the United States.

And all of these reports salivating over the details of the President’s medical record fill me with new awe that FDR managed to conceal many of the aspects of his disability. A different era, indeed.

Given the fact that not only the US media but the international media is covering the results of the Presidential physical in such graphic detail, I am curious to know if readers in other countries have noticed similar trends in terms of mediasplosions over the health of their heads of state1. Is it unusual to see such coverage, or par for the course?

  1. It’s not just heads of state here who are subject to such intense scrutiny, of course; here in California, Senator Pat Wiggins has been mercilessly pursued by the media over her health issues. This includes rampant speculation about the kinds of medical issues she might be experiencing and whether or not she is able to serve as a Senator.

Recommended Reading for November 12

Private Practice Takes a Bold Stance against Decent Behaviour

There’s a new doctor at Naomi’s practice, Dr. Fife, a genetic engineer who uses a wheelchair who pressures Naomi into agreeing to select for an embryo for two patients with dwarfism to allow them to created a baby who also has dwarfism. Naomi is reluctant but agrees until she learns that these embryos will also give the future baby a 40% chance of developing some kind of cancer (which Lauredhel over on FWD points out, is the baseline cancer risk for the US population).

18th Down Under Feminist Carnival

This Carnival has an optional caring theme, thanks to Australian Carers’ Week (which was October 18 to October 24). The theme for this year was “Anyone, Anytime, Across Australia”, which I modified to “Anyone, Anytime” for the purposes of the DUFC.

Denmark Strips Away Right To Privacy from Blind Voters

On Wednesday I read that one of my blind friend’s in Utah just experience voting by himself for the first time thanks to his voting machine having built in text to speech. On that same day, I also read that the blind in Denmark not only don’t get to vote by themselves, they have to have a council member present when they’re voting. This rule was supposedly implemented to make sure that the sighted helper wasn’t pressuring the blind voter to vote in a particular way, but what it really does is just strip that voter of their right to privacy.

On being “Crazy”

Crazy is something altogether different. Crazy is delusion, psychosis, mania, schizophrenia. Insanity, in the depths of society’s psyche, is jabbering in tongues rocking back and forth in a padded room. It can’t be trusted. It is the serial killer, the mother who kills her children, the man who laughs while committing the most vile crimes – this is what “crazy” conjures up in the minds of the general public.

This terror, this nightmare looming in the dark places of our collective consciousness is harmful. Incredibly so. It means that people who are not neurotypical are stuck with the paradoxical choice of lying or being mistrusted. Perhaps more importantly, it makes us less likely to seek help when it is needed. It took me years to admit, even to myself, that my brain was fundamentally different than most. Because I didn’t want to be crazy.

In the news:
Vatican post office issues stamps with raised dots to honour inventor of Braille system

The Vatican post office says it has issued its first Braille stamps to commemorate the 200th anniversary of the birth of Louis Braille, the French creator of the writing and reading system for the blind.

The stamps feature a portrait of Braille and his system’s raised dots that spell out Braille, Vatican City State and the price.

Don’t forget, we’re also doing some guest blogging at Bitch Magazine! Check out meloukhia’s introductory post about disability! (Yes, I do write up recommended reading in advance.)

“Please, Keep Us Updated On Your Health”

How about not?

Truly, this is probably one of the most annoying things which people say to me. Well, ok, I exaggerate, but people have been saying it a lot lately so it’s on my mind.

I’m a rather private person. I don’t think I’m that much more private than most, but as a general rule, I believe that my health is a personal matter. And that my body is my business, which is yet another example of how feminism and disability intersect, since women and people with disabilities have a long history of lacking bodily autonomy and getting serious pushback when they dare to try and assert it. My health, and my body, are between me, and the people who provide me with medical care. I may provide select people in my life with relevant information about my health when it becomes apparent that the information is necessary or important (for example, when I worked for other people, sometimes I needed to request accommodation in the workplace). But this is not an open invitation to these people to ask me questions about my health.

Yet, they seem to think that it is. And this is one of the biggest problems with owning your disability status when you have invisible disabilities. When you out yourself as a person with disabilities, people are apparently under the impression that this means that you want to talk about the specifics, that you welcome their suggestions and helpful hints, and that you would like nothing more than to discuss detailed and highly private health  matters in public. They assumed that you were like them and now that your dirty little trick has been revealed, they think it entitles them to information about The Other.

Truly. I have had people talking in very loud voices in public settings about intimate health matters. One might think that even if these people think that the desire for privacy does not apply to them, they might think about the fact that broadcasting information to complete strangers is probably not desirable. Especially in a small town, where information travels fast and often gets garbled, which means that I’ve heard a lot of varied, wrong, and highly entertaining variations on my disability status and health issues. (My favourite story: I had an aneurysm while on a dirty weekend at Tahoe with a cop. People, you cannot make this stuff up!)

Sometimes complete strangers apparently think it’s ok to act like they know all about me because they’ve heard something through the grape vine. Who feel that it’s appropriate to, say, walk up to me in the supermarket and say “I heard about…the diagnosis” or “how is your new medication working out for you,” or “you know, my sister’s son had [whatever they think I have], and he grew out of it!” And I must stand there, politely gritting my teeth while someone I don’t know is basically assaulting me in a public setting. And I can see everyone’s ears perking up as they freeze over the bananas and stop squeezing the oranges, because they want in on this juicy gossip.

The thing about invisible disabilities is that a lot of them carry stigma. I have no problem with being very open about my asthma, because, you know, it’s a no-fault disability, and it’s a pretty visible one at times. Some people just…get asthma. And it’s unfortunate that this happens, but no one makes a value judgment about you when they hear that you have asthma. Although they will tell you that someone they knew grew out of it. If I had a dollar every time someone said that to me…well, I wouldn’t be worried about my health care expenses, that’s for sure.

But, other conditions which I have? They carry stigma. One way to address stigma and to fight it is to come out, but that’s not an option for everyone. And I need to think about the fact that I live in a small town and I will probably live here for the rest of my life, and I would rather not be branded for life by the judgments of others. I need to think about the fact that people are routinely denied things like bank loans on the basis of disability status, and I need to think about whether or not I am ready for that to happen to me because the bank manager knows exactly who I am. I need to think about what will happen when I need to rent a new home and the landlord turns me away because of garbled information about my  health and personal history.

And I need to be able to assert my own autonomy.

Someone I don’t know very well recently asked me to “keep me updated on your health,” and I had the audacity to say “you know, that’s really a private matter,” and this person looked at me as though I had shat on ou mother’s grave while doing the tango.

Yes, I, the person with disabilities, chose to exercise autonomy over my body and private medical information by telling someone that my health status was not this person’s business. And I became the bad person. Just as women who inform people that their bodies are private are told that they’re being unreasonable.

Which brings me to my final point; I can’t help but notice that people somehow always manage to turn things back to them. They don’t care about my disability status or health; if they did, they’d already know about it. What they care about is information, the control of it, and the opportunity to exercise power over me. And this is, perhaps, what I find most infuriating about “please keep me updated about your health.” People get angry that my private information is not relevant to their lives, and thus, they make me into the enemy when I suggest that they should go take a long walk off a short pier and enjoy the swim.