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.