So Far
Jason and I were talking the other night over dinner. I was telling him about the Green Family Foundation Blogger Roundtable on Access to Healthcare I attended, and how many of the participants talked about the need to put a human face on the issue. In that moment, I thought of the video I saw of a disabled woman at a town hall meeting, in New Jersey which only amplified my shame and horror since it was the sort of thing I hated to see emanating from my own backyard. The woman was in a wheelchair and was trying to describe her ailments and the financial nightmare she experiences trying to get her healthcare needs met. She was heckled and booed by the audience in what was one of the most disgusting displays of inhumanity.
I relayed to Jason how, with that video in mind, I had said to my fellow discussion attendees, “I hate to sound like a cynic, but I don’t know that putting a human face on it is as effective as we’d like it to be. People just don’t care unless it personally affects them, unless it’s their family member who’s sick and in need of medication, supplies and treatment.” Very matter-of-factly, Jason agreed with me. He said if it weren’t for me, he wouldn’t know or care about health care reform. He wouldn’t know or care about diabetes. He said, “If you didn’t have diabetes, you wouldn’t know or care either.”
I grudgingly agreed with that last part, although who I would be and what my priorities and values would be if I didn’t have diabetes is completely unimaginable to me since diabetes has shaped every facet of my personality and every aspect of who I am. Trying to fathom what I would be without diabetes is like trying to imagine what a child who died at age 5 would be like at age 36. Lee Ann sans diabetes slipped away during the Carter Administration, back when her priorities were the latest Barbie, a new box of crayons, Fun Dip, and Little House on the Prairie. Heaven only knows who or what that little girl would have grown up to be. Maybe she wouldn’t care. Maybe she would.
Now all that remains is Lee Ann with diabetes. Since this is who I am, I do know way more about diabetes and about needing healthcare than the average person. I try to be very understanding and forgiving that the rest of the world isn’t as knowledgeable about diabetes as someone who actually has diabetes. I love when people ask me questions about diabetes. LOVE it. Ask away, and I’ll explain whatever you want to know for as long as you’re willing to listen. It brings me delight to educate someone because any block I can remove from the fortress of misconceptions is progress. Maybe it’s not much, but it’s something. One less person walking around thinking I have diabetes because I ate too much sugar or thinking I take insulin so I must be at death’s door is a check in the success column as far as I’m concerned. But where do you draw the line between forgivable unawareness, and unconscionable ignorance?
I actually don’t encounter blatant ignorance that often though, at least not in real life. I’m guessing that probably has some relation to the fact that I don’t leave the house that often, and when I do, I don’t necessarily interact with people. That’s just a theory I have though. However, I hear about ignorance on the interwebz. The most recent that leaps to mind was brought to my attention by Wendy via Shamae at Crazy Happy Life. It was the case of Mr. Barber, the jerk who wrote his local paper to complain about a child taking an injection at a nearby table in Burger King, ruining his lunch. I think it’s a fair assumption that the child was taking insulin, based on the account. While we’re all terribly sympathetic that Mr. Barber’s lunch was ruined by such a thoughtlessly gross display of diabetes self-management, I suppose it never crossed his mind that every meal that child eats is ruined by having to take an injection. Unfortunately, I’d say from the tone of the letter, even had that crossed his mind, he wouldn’t care either way.
That letter was appalling, but even more appalling was the level of ignorance it represented and the fact that there are people like that everywhere. Ignorance is all around and inescapable, at your child’s school, at your place of employment, amongst your friends and family, in the editorial section of your local paper, and apparently, sitting a table away from you at Burger King. How do we even begin to quantify the ignorance? Well, you and I can’t really do that despite the often overwhelming anecdotal evidence we amass, but apparently the American Diabetes Association took a little poll in an effort to measure just how clueless America is about diabetes. Even with the knowledge that there are more Mr. Barbers out there than I care to consider, I shook my head in complete dismay as I read this article in Forbes about the survey.
“Diabetes is responsible for more deaths each year in the United States than breast cancer and AIDS combined, but just 42 percent of those surveyed knew that diabetes could be so deadly.” Honestly, this is a whole other post that I probably won’t even ever write because it’s one of those if-you-don’t-have-anything-nice-to-say-don’t-say-anything-at-all posts. If we ever sit down over some diet sodas though, feel free to ask me, and I’ll freely share my thoughts on this.
“Those who have the disease often say the lack of awareness can feel like a lack of support.“ Welcome to the pancreatically challenged corner of the universe.
“‘… and at a party, nobody thinks about something simple, like getting diet drinks.’” This is a quote from a woman interviewed for the article, and it rang true for me. I love my diet soda, so this is a big pet peeve of mine. I probably need to get back in the habit of just carrying extra diet sodas with me wherever I go.
“McLaughlin said a common myth is that sugar and overeating cause diabetes. But, that’s not true for either type of diabetes. Diet isn’t a factor at all in type 1 diabetes, an autoimmune disease in which the body mistakenly attacks the islet cells in the pancreas, destroying the body’s ability to produce insulin.“ When I read an actual distinction between T1 and T2 that’s also accurate, it makes me giggle like a schoolgirl.
“Still, only one-third of the people surveyed knew that too much sugar did not cause diabetes.“ Ugh. I’ve been hearing this one since 1978, and it makes me want to scream.
“Just 12 percent knew that people with diabetes don’t have to follow a more restrictive diet than the healthy diet that’s recommended for the general population.“ I hope the day will come when I can eat a piece of cake and not get looks or comments, but if 88% of people think I can’t eat cake, I just don’t think the day will ever come when I can eat cake in peace.
“Almost one in 10 respondents thought there was a cure for diabetes, and 19 percent weren’t sure. (Although there are ways to manage diabetes, there is no cure.)“ Holy %$#@. Seriously? I think this stat is probably the most upsetting for me.
“Less than 60 percent could correctly distinguish between type 1 and type 2 diabetes.“ That’s better than I would have predicted. But it still sucks.
“Almost 20 percent erroneously believed that the death rate from diabetes was declining.“ This is a close second to the 29% who either think there’s a cure or aren’t sure if there is one.
“Overall, Americans scored a 51 percent on the survey — a failing grade.” We have so far to go, my friends. So. Far.
Since it’s American Diabetes Month, maybe we can make a little progress though. As a means of combating the misinformation, mistruths and misconceptions, the ADA has launched Stop Diabetes:
a movement to end the devastating toll that diabetes takes on the lives of millions of individuals and families across our nation. It will inspire and mobilize the general public, volunteers, donors, corporations and the scientific and medical communities to rally around our cause and our call to “share, act, learn & give”. Through these actions, millions will have the chance to get involved and help raise awareness, promote healthy living, and raise money to fund educational outreach, advocacy efforts and critical research that will ultimately stop diabetes once and for all.
I think it’s worth a click to check it out since we obviously need all the help we can get to chip away at those awful statistics. I dig the little hand logo too (although I’m bummed I couldn’t find a larger version of it…), and obviously, I think any kind of visuals are great for the purpose of raising awareness. The ADA has also redesigned their main website, so when you get a chance, you might want to check that out too. Everything we do to reduce the number of Mr. Barbers in the world is a step in the right direction, and we cleary have a lot of ground to cover, so let’s get moving!
* Just a reminder that I’m donating money to two of my favorite diabetes organizations, Behavioral Diabetes Institute for every comment I receive this month, and Diabetes Hands Foundation for every click I get on November 14th, World Diabetes Day.
Ignorance is Not bliss. Who came up with that garbage anyway?
Great post. I read those stats too. Sad. Unfortunate.
Here’s hoping WDD this year will make a big difference. Awareness and education of what Diabetes is and isn’t needs to be better in this country.
Comment by Crystal — November 3, 2009 @ 5:15 pm
I’ve often said stupid people breed faster. That’s my only explanation for the Mr. Barber’s of the world. Goddess help me if I ever meet him. All we can do though is keep advocating for ourselves and others.
Comment by Michelle — November 3, 2009 @ 5:24 pm
I love your posts
Thanks for the shout out!!!
Comment by Wendy — November 3, 2009 @ 6:26 pm
How do you distinguish between someone who asks you if you can eat cake because they don’t know any better and someone who is being judgemental or blatantly ignorant? It seems like if you want people to ask about it, you have to let them ask about it the best way they know how.
Comment by Kelly — November 3, 2009 @ 6:58 pm
Ignorance is not bliss- it’s just plain STUPID. That was the title of my blog post in response to Mr Barber’s post (www.faithhopecure.blogspot.com). We have a few things planned for World Doabetes Day – lighting the house up with blue lights and a whole day (complete with food and trinkets) planned for my daughter’s class to name a few. Those stats make it very clear just how important every little bit of education is! Great post!
Comment by Hallie — November 3, 2009 @ 9:05 pm
Once again you hit the hammer on the nail. Great post:)
Comment by Cherise — November 4, 2009 @ 12:58 am
I found this post very interesting, but I have no substantial comment. I hope you don’t hate me for commenting for the quarter.
Comment by sajabla — November 4, 2009 @ 2:12 am
Great post. As I was reading, I was telling my husband some of the results of the ADA’s survey and he says to me “yeah, but people don’t encounter diabetes everyday, so of course they don’t know as much about it as you do.”
Comment by Judie — November 4, 2009 @ 2:13 am
You and Jason talk over dinner? You don’t just sit on the couch stuffing down food while watching TV? Ummm, neither do Pete and I. Yeah, we talk over dinner too. Sure we do.
Okay, okay, I know that’s not the point of this post. I really shouldn’t be reading and commenting on blogs before I’ve finished my coffee and my brain has kicked into gear!! Anyway, you are so right – about all of that. Just last night I was punching a blood sugar reading into my pump after my ballroom class, and the web-guy sitting next to me said “Wow, that thing looks old school”. I let him know it wasn’t a cell phone or pager, it was my insulin pump and I think he was a little embarrassed. I wasn’t offended at all, but things seemed kind of awkward after that. He hadn’t really asked any questions, how much info do I offer? How do I let him know I wasn’t put off by the fact that he hadn’t recognized my gadget as a pump? How much awareness can I spread before he tunes out and goes back to designing the studio’s web-site? Sometimes it’s hard to tell just how interested people are. After all, we don’t all live in my bubble where diabetes is front and center most of the time.
Comment by Karen — November 4, 2009 @ 8:01 am
Curious about a point there:
“Almost 20 percent erroneously believed that the death rate from diabetes was declining.“
This is a close second to the 29% who either think there’s a cure or aren’t sure if there is one.
Is this in the US, or globally? Is that raw numbers, per 100,000 general population, or per 100,000 PWD? And is that T1, T2, or all types? (Trying to figure out if the “non-decline” is related to more PWD, more PWD in harder-to-treat populations (poor, remote, emerging nations), greater understanding of diabetes as the underlying cause of death due to cardiovascular disease, or a lack of inroads being made despite the availability of meters, pumps, faster-acting insulins, and CGMs…)
Or maybe the correct question to ask is, what is the average length of post-diagnosis survival of T1, and of T2, today versus 20 years ago?
Comment by tmana — November 4, 2009 @ 8:39 am
I agree that there are people out there who just don’t care. But I also believe that there are those who, if they knew, WOULD care, and would help make a difference. Every person we educate is one small step toward greater understanding. I can’t tell you how many times I went into a brief explaination of Type1 and the person would get distracted and stop listening. I want to scream…”THIS IS MY LIFE! CAN’T YOU LISTEN FOR JUST ONE MINUTE! I NEED YOU TO UNDERSTAND!” Those who ask questions, who want to know more…they are the reason I keep trying to educate. We just had an article yesterday in the paper that didn’t distinguish between type 1 and type 2. I put in on my blog…what do you think…am I too sensitive?
Comment by Meri — November 4, 2009 @ 11:13 am
I always agree wtih the things you say
Comment by Breanne — November 4, 2009 @ 12:33 pm
Was reminded of the day my boss came into my office to offer me some carb-loaded-goodness, all the while saying ‘I know you shouldn’t have this’. That is just wrong on so many levels. It’s like saying, here you go, have a cookie, but make sure you don’t forget to eat a side of GUILT with it. And this is someone I’ve worked with for 4 years. Haven’t I explained my disease better than that???? Some will really listen and at least try to get it, others never will, no matter how hard we try.
Comment by zip — November 4, 2009 @ 1:09 pm
My daughter’s Kindergarten room has been designated peanut free. No nuts in snacks, no pb&j for lunch-and as as any parent of a diabetic knows, pb&j is our friend at lunch. Fine, I go along with the program. I understand what it feels like for a parent to want their child to be safe with their medical needs. However, when it comes to birthday snacks, the kids bring in unbelievably sugary snacks – one kid brought in a huge bag of cotton candy for each child in the class. It is bad enough to have to re-explain to a five year old why a big bag of cotton candy isn’t good for ANYONE, let alone a diabetic. But the worst thing is when I see the parents and they wink at me and say, “I’ll bet you hate me after the snack I sent to class the other day.” This shows me that they are not acting out of ignorance (which I would prefer), but knowingly send things that exclude my daughter when they could easily find snacks that she could enjoy without sending her sugar out of control. Too much sugar isn’t good for non-diabetic kids either, and if I’m thankful for anything with this disease, it is that my diabetic daughter and my other four non-diabetic kids will grow up to be healthy because they know how to eat right. I don’t expect everyone to be able to understand or discuss diabetes intelligently, but I would love for them to put themselves into my daughter’s place or into my place as her mother and think about how their child would feel if diabetes were in their life and they were presented with the theater size box of Mike and Ike’s. I’d also be interested to see what kind of an uproar I would cause if I sent my daughter to school with the peanut butter & jelly sandwich that she wants so badly in her lunchbox!
Comment by Tina — November 4, 2009 @ 4:38 pm
I have been thinking about this topic so much lately and trying to formulate a post of my own for WDD. I had not seen the survey or Forbes report before..thank you for sharing it!
Comment by Jen — November 4, 2009 @ 8:30 pm