Tuesday, August 13, 2013

Pills, Privacy and Me

I was chatting, yesterday, with someone who almost literally bumped into me. I had come to a stop, she was texting on the phone and walking quickly towards me, I called out but she couldn't hear me because she had ear phones stopping all natural sound. She looked up at the last minute, veered to the side, and laughed. "I've read on your blog how much you hate when people aren't paying attention." I smiled, trying to be civil because she's right, it really annoys me.

She then launched into a friendly conversation with me. Her job with a local service provider is rewarding but frustrating, her 'clients' are teaching her more than she teaches them ... and the like. It was in college that she'd started reading by blogs and one of her teachers had required the whole class to read a particular blog and come to class prepared to debate for or against my position.

After a few minutes she said that I was quieter than she expected me to be. I had thawed out during her chat, she was quite charming. I told her that I'd not been feeling well and that I'm taking a whack of anti-biotics and they always leave me feeling quite nauseous.

I expected, I don't know, something along the 'hope you feel better soon' vein.

What I got was quite different.

She said that she was a faithful reader of my blog and she hadn't read anything about me being under the weather. I told her that I don't write about every aspect of my life, only the ones that really fit with the theme of the blog AND of course the ones I wish to keep private, I keep private. To me there was no 'story' in being unwell.

I could tell she wasn't buying what I was saying. She nodded, a little curtly, and moved on. She clearly was angered that this bit of medical information wasn't up on display on my blog.

At first I thought that this was about how she, and often others, see this blog. It is a personal blog, true, but it's also a blog with an agenda. I write this blog to say things about my experience or the experiences of others in living with disability. To me this is an endlessly fascinating topic.

Then I thought  that maybe something else is going on here. I thought of all the intrusive questions I get, from strangers, about my disability, my weight, my health - information that people feel that I somehow owe them. Like I am under obligation to explain to them intimate details of my body and my health simply because they have a right to know and I have the duty of explanation. I am, of course, always clear, in my response about boundaries.

Yes, I am on anti-biotics right now. No, it has nothing to do with my disability. Last time I looked, the line up at the pharmacy was full of walking people. I know two people, right now, normals, who are also on anti-biotics. Not everything I experience is directly related to my disability.

I got sick. I'm getting better. Wow, that's a bit of a dull story.

Privacy, and the right to privacy, is still, obviously, a struggle for people to understand when the person claiming the right has a disability. The public nature of our disability does not mean that we are required to be public about the nature of our lives.

I remember, a few years ago, when having tea with friends, a woman sitting down at a table beside us. She broke into our conversation to ask me why I used a wheelchair, what my diagnosis was. I told her that this was private information. She said, "That's OK, I'm a nurse." My friends were shocked at the woman's question and the fact that she felt free to enter into a conversation, between friends, to ask a question that was none of her business. They were also surprised at how offended she was, how she presented herself as a victim of my mood, because I, politely, told her that it was none of her concern.

I was shocked at their shock.

It happens fairly regularly.

So now you all know that I've been sick these last few days. You'll see me out and about because I get bored sitting around. The pills make me nauseous but a friend recommended Kefir as a drink that might help with the 'watery mouth' and the churning guts ... and it really does.

To the woman I met yesterday: NOW there IS a story.


Anonymous said...


There is soooooo much I want to comment regarding this post. I hope sometime at this busy day I will have a gap to sit down and do it.

If not just one remarkable thing you brought up: with a disability it is hard to distinguish the boarders for privacy - at least that is so ething I strongly feel and experience.


Mary said...

I wonder, if instead of being on antibiotics, you'd been out of sorts because you were a bit constipated, would she have remarked that you hadn't been blogging your bowel movements?

You aren't public property, and I'm sorry you were treated as such.

Louna said...

I find it quite offensive that she expected to read about this on your blog, especially since you have already made it clear that you do not share everything about your life and health here. Still, now that I know you're ill, I do hope you get better soon.

Jo Kelly said...

I was out at a street festival on Sunday with my daughter-in-law and she was shocked that a woman at a vitamin booth we approached asked me why I was in a chair. I politely advised that it was none of her business - to which she made it seem like I was oversensitive and might cry or something. I laughed at her. My d-i-l could not believe it - I told her that was nothing, it's even more fun when strangers seem entitled to ask questions much more personal - like can you have sex or do you live alone etc.... I told her this is an everyday experience. It really bugs me though, that I can't just have my right to privacy - I'm either oversensitive, a bitch with a chip on my shoulder or I'm angry at the world - I can't just be private?

Kristine said...

Have you seen the sarcastic "cool story bro" meme? Because that's what "I got sick. I'm getting better," made me think of. :)

Seems fairly common for people to think bloggers don't deserve privacy. And we all know the belief that the disabled don't deserve privacy. Guess you're a double whammy! Which is ridiculous. I really appreciate that you're willing to share bits of your life with us. But there are extremely few people that I'm close enough to, that I'd expect them to grant me anywhere near "full access" to the details of their life. I certainly don't have the right to expect it from strangers!

The "I'm a nurse" story just makes me roll my eyes. People in the medical field tend to be the worst privacy offenders, in my opinion. I remember being a teenager and in the hospital for several weeks, so sick that I couldn't leave my bed, so EVERYTHING happened right there in my hospital room. I can't even express how frequently I had staff walk in on me in various states of undress, or, you know, just in very private moments. It didn't matter if it was a doctor, nurse, therapist, or the custodian cleaning the floor, NOBODY thought they needed my permission to enter. I put a sign on my door, asking people to knock and wait for permission. That didn't help. I finally put the sign directly over the doorknob, so it was physically impossible to open the door, without interacting with the sign. That helped some. I still don't understand why the slightest degree of privacy is such an unreasonable request in a hospital.

Anonymous said...

How would anybody be able to fit every detail of their life onto a daily blog post,even if they wanted to?

I get very confused about the privacy thing too. When people are obviously being rude in their questioning its easy to tell them its none of their business but most people just slide the 'so whats wrong with you,why are you in a chair' thing into what you thought was a normal conversational exchange and then I find myself answering and being angry with myself for not knowing a polite way to say I dont want to tell you.

Can you do another post on this right to privacy as a visibly different person please Dave?

I think about this right to privacy issue a lot and i still cant get my head round it. Partly because i dont understand WHY someone else would want to know personal stuff about me. If I tell people my diagnosis or explain my condition it doesnt benefit them in any way,they cant do anything with that information and chances are they wont even understand it.So why do they ask?

I've wondered if its so they can find some context to know how to feel towards me.Like,if they should feel pity or inspiration or judgement or solidarity,because they cant work that out without knowing how to fit my difference in their mind?

And when we block them by refusing to provide that information they default to the judgement of us as unfriendly and get the hump with us?

So do we really have that right to privacy if it stops communication with the normals we need to interact with?

Susan in Massachusetts said...

I think this is about boundaries. Some people are very open (and maybe too open) and share a lot of personal information. Others maintain more healthy boundaries. When I read a blog, I get to know someone in some ways, but I'm still not a friend- so I'm still on one of the "outer circles". I think some people just never learned about healthy boundaries and what it means to respect them.

B said...

The 'normals'. I've said that too but you have me thinking about it. One time I heard the reference 'TAB' for temporarily abled bodies. One of them got quite upset to being referred in that way. I'd like to say "you averages..." but I am sure my tone would sound really insulting.

On the topic of privacy; well, anyone with a history of visible physical limitations gets it, don't they?! I tend to respond as if I'm explaining to a 2 year old. Sometimes I have a bit of fun at their expense. Best to avoid the medical people wherever possible though.

Anonymous said...

I am constantly amazed how those who are continually exposed to medical conditions and/or work in them think that "we" wish to expose ourselves. You may be use to seeing bodies in various stages of undress or distress - but not my body. Your experience should help you be more empathetic - not nosey. Folks wouldn't tolerate someone walking up to you and asking if you have false teeth. The add, "It's ok, I'm a dental assistant". That is no more odd than the medical questions. Sshhh!

Deb said...

We were in Vegas as a family, with both my sister and I in our chairs, kids and husbands in tow when this incredibly intrusive huckster came up, crowded into an elevator with us and started pushing his "miracle" services at us, "I can cure you, get you out of those chairs, you can have a life, yada yada."

I think my brother-in-law was about to punch him when we hit our floor and got off. Some people's kids...