I agree. I'm 32 and I'm not a young adult but I'm not middle aged, either. So what do I call myself?
I was talking to my husband not too long ago about when we first met and started hanging around each other and I stated that I had no idea he had T1 until someone told me a year or so after we initially met. He never hides his testing or his pump, so I guess I'm just not that observant and I'm certainly not on the look out to watch and police other people's health management.
I did tell him the one thing I did notice was that he brought juice and crackers with him everywhere, but that I thought it was just a cost saving measure. So he replied, "Oh, so you just thought I was cheap, then?" to which I replied, "I guess I did, yeah."
Anyhow, I can't imagine anyone being offended by anyone taking care of their health in public or wherever. Saying that discretion should be used is just kind of silly because, for the most part, people aren't paying attention to you anyhow because they're so wrapped up in their own business and testing couldn't be more discreet anyhow. My inhaler is much more obvious.
If the Martins decide that scuttling off to the bathroom is appropriate for them when they feel that it's called for or it's a non-emergency, that's fine for them, but they should have never made a recommendation to do that.
Blind is totally fine—it's just, as you mentioned, some people feel it should be restricted to those who have no (or very, very little) vision. Totally blind people make up less than 10% of all people classified as legally blind, so they are actually in the minority. My family and I refer to myself as blind, but I'm careful when using it with other people because it tends to make people think I have no residual vision.
I agree, double speak is what I see here. Why is her type 1 son who says he tests at his seat on a plane telling someone else to go the bathroom? Just pure stupidity imo. As I said before in response to this, if people want to test in private that is their choice but they should not be told to do it in private, which is what was done in that article, or to be discreet imo. When I test in public I don't try to conceal what I'm doing and most people don't even notice. If they have a problem then can leave or look away. The fact is most people don't really care at all enough to even notice what is going on.
The word blind is perfectly acceptable, there is nothing pejorative about it. The main difficulty with this word is that some feel that it should be limited to referring to people with no (or virtually no) residual vision, and others who have partial vision feel that they fall into a different category. My personal opinions on terms are:
Blind to refer to those who have no usable vision OR to those who have residual vision if they apply the word to themselves.
Low vision to refer to people with residual vision but not enough vision to function in the world without aids (such as magnifiers or assistive technology) to function in daily life.
Partially sighted to refer to much the same group as above, people who have residual vision but are not fully sighted.
Visually impaired refers to the entire spectrum, from people who are totally blind to those who can see everything except small newsprint.
Terms that are generally not liked include the examples I used above, as well as weird phrases that are made up simply for "political correctness" or to avoid the word blind (which many in the general population think is bad) such as "hard of seeing."
I personally refer to myself as blind with friends and family. But I have had some people, including both those who are totally blind and those who are fully sighted, insist that I am not blind and should not use that term because I have residual vision. I do recognize that my experience is significantly different from someone who has no usable vision, but my level of residual vision is so limited that I think the term blind applies. I can read large print if I wear really strong reading glasses and hold it right up to my nose (or extremely large print from a slightly more comfortable distance), and I can see enough to identify objects around me at close range, but I use many of the same tools as people who are totally blind and face almost all the same challenges in terms of access to products, services, employment, and equality. (I actually thought of exactly this during the whole T1/T2 discussion a day or two ago, since it seems very similar.) In order to recognize the fact that I do have some vision (and that this does present a different experience than having absolutely no vision), I've settled on referring to myself as "severely visually impaired" to people I don't know, but continue to use "blind" with friends or family and also often in my blog posts where I'm talking about my own personal experiences.
Right on the money. Every psychological study I've ever seen confirms what nearly every diabetic I know discovers: that people simply do not see most of what goes on around them. There's a fascinating book that covers this phenomenon, The Invisible Gorilla by Chabris and Simons.
I wonder if online groups of people with colostomy bags have similar perspectives and discussions. Those things need not only to be emptied, but also vented off sometimes. It’s for their health, it has to be done when it has do be done-- why should they be expected to do it in a restroom? What makes us so different. I really don’t get it. I understand in the case of children, testing whenever wherever without regard for privacy seems appropriate for young children and parents testing their young children… But after all its also appropriate for young children to do other things that its not for older people… Like run around naked or have their diaper changed in front of strangers. Just seems to me that once someone reaches an age where they are fully aware in society they would choose to opt to do these things in the privacy of a restroom whenever possible.
I think the two key questions I would ask, in comparing diabetes to any other medical condition, are:
a) Is it something that needs to be done half a dozen times a day or more?
b) Is it something that can be done without affecting a nearby person?
If the answer to both of those questions is yes, then in my opinion it is not an issue to do it in public, in particular while travelling.
My apologies for not providing my comment along with the link. I've seen the multiple blog posts, comments on facebook & other sites, as well as here. Generally, I avoid these kinds of discussions because they always seem to turn into cat fights. T1, puberty & PCOS provide all the drama I can handle. :)
Since my daughter's diagnosis in 2009, I've worked hard to try to teach her that D is only a small part of her life. We tend to be fairly low-key about all things D, including checking BG in public...& not because we believe there's something to hide or be ashamed of. We just don't make a big deal of doing what must be done, & we hope that our approach encourages others around her to not make a big deal of it either. Fortunately, the only time it's been a problem was while she attended public school.
Honestly, I wasn't aware Miss Manners was even still around. Her opinion of what's proper for PWDs is completely irrelevant as far as I'm concerned, with or without her family's experience. However, she apparently has quite a few readers. I'm not qualified to make assumptions of her (their?) intentions. I can only hope the statement about welcoming more questions concerning D was in good faith. I see it as an opportunity for advocacy.
I also think Mike Hoskins made some good points in his personal summary.
I have many times had the impulse to tell people talking overly loudly about absolutely nothing on their cell phones to take it somewhere else! I was really glad when texting became more popular than talking because at least it's quiet! (and ensures that about 90% of the population will be looking down at something in their lap or on the table at the same time I'm testing my blood sugar!
During my B.Ed. I spent an entire year with a single cohort of 15 fellow student teachers. Every day I would test and inject right in front of them, mostly not even attempting to hide it. I'd frequently do it without even interrupting a conversation I was having with a group at my table. It wasn't until six months in that someone asked what I was doing. When I told them, someone asked when I'd been diagnosed. At least half the cohort had no idea I had diabetes even though I'd been doing diabetes stuff in front of them multiple times a day every day for months. At the end of the year I went low during our graduation ceremony and drank a juice box. Even then, some people were shocked to find out I was diabetic. I couldn't believe it; but it really does confirm that most people don't notice most of what goes on around them.
Incidentally, I've had more than one person not realize that I am visually impaired even when I'm standing in front of them with a white cane, because I don't "look blind" or "act blind" or they didn't realize I was holding a cane (even though they are painted to be as reflective, recognizable, and noticeable as possible!). I think people respond more to how people act than what they actually do. If someone is as casual about testing as they are about checking their cell phone, I don't think many people are going to pay any attention to what they are doing.
Interesting David, I will check that book out. By the same token, I don't pay attention to other people when I'm testing etc. If someone notices me and says something, it has only ever been out of curiosity, never a complaint, then I notice them. And I don't make a "big production of it", but I don't bother to conceal anything etc. If I'm sitting at a table I put my things on the table or do whatever I need to do to make it easier for me- I'm too busy taking care of myself/my bg to worry about what other people think or to pay attention to them. This is about me and my health not about other people imo.
If people are talking in a movie theater during the film, in a consistent distracting way I do ask them to be quiet, or if they are smoking and so on in a public place I will ask them to stop- this is illegal in NY now and I have asthma and allergies so it is a health hazard to me. I recently returned a coat I purchased on ebay because it had heavy perfume on it which couldn't be washed out- the seller wasn't willing to refund me everything initially and claimed it must have happened in shipping. But ebay sided with me and gave me a full refund once I shipped it back.
My inhaler is much more obvious.
I had asthma as a kid and was "re-diagnosed" about a year and a half ago (I went for about 10 years without an inhaler because it so rarely bothered me). I still have not brought myself to use my rescue inhaler in public because I don't want to draw attention to myself (I just don't want anyone freaking out, etc.). I know at some point I will have to—I've had a few times where I've felt I needed it and just waited until I got home, which I know isn't good. But I agree, testing is very discreet compared to many other medical things which people would not have an issue with.
Thanks, Jen. I somehow thought that the word "blind" was an anachronistic term that had taken on some negative meaning in recent years. Glad to know that I can use it with a clear conscience.
Agreed, I hope they didn't fall on their a#### trying to backpeddle away from this one.
Personally, I wasn't angered by what they said. I thought it was dumb, but people have the right to say dumb things, and even get paid to do it. If I'm offended by anything, it's being taken for being just as dumb. If you didn't man to say test in a bathroom, they shouldn't have said test "like a bathroom".
Well, blindness (the condition, not the term) is certainly viewed negatively, but I think it'll take more than changing the terminology to change that ...
A public restroom, which is full of germs, is anything but private- there are other people there … unless you plan to test yourself in the toilet stall- not a good idea. People with colostomy bags do use public toilets to empty them when they have to but a full change is hard for them to do due to lack of space. Public restrooms aren't designed for doing bg tests or injecting meds and it would not be a good idea unless they are extremely large and they have a powder room area with seating/countertops etc. but they still aren't private unless it is a single bathroom. They are designed for things like using the toilet & washing your hands, changing diapers at diaper changing stations and so on, in other words, mostly for things to do with those specific bodily functions. Re: Colostomy bags, they would be expected to do it in a restroom because that is the obvious place to do it unless it is some sort of emergency.
I gotta say I'm still having trouble with the whole concept of "Miss Manners". Sure, I believe in being polite: I say please, thank you, excuse me. I wait my turn in line. I don't push. I listen to others. But the whole concept of a column asking such diverse questions about "manners" implies that there is a whole culture of behavior with wide ranging ethical and moral implications and that there is one right way of doing things This to me is unacceptable in the culturally diverse world I'm happy to live in in 2014. I remember the '50's. I didn't like them; I rebelled against "one right way of doing things". Manners for healthcare? I don't think so.
As for testing in public it's a personal choice. I used to go to the bathroom and then one day I had lunch with another Type 1 for the first time. Hi Donita! As she tested I looked around the busy cafe and absolutely nobody noticed. I began testing (discretely) in public. But if you prefer a more private setting I'm not going to tell you that you're "ashamed of your D". Just like there's lickers and tissue wipers. I'm not going to say "yuck" at the lickers (though I may think it..lol).
I mean seriously, Miss (or mister as it turns out the case may be) MANNERS!?
Thanks, Jen, very useful. My mother was blind in one eye (after a radical procedure for a virus). She always made a point of saying "I'm blind in one eye". I thought it was snobbery; she wanted to make sure you knew she wasn't "a blind person".(I think there was much more negative views back then) But now I realize that her degree of functional impairment was very different from someone with vision loss in both eyes, so it was useful information.