Advocacy by number
When I think of an advocate (outside of the diabetes-realm), I think of someone who steps up to bat for the little guy. Not quite a lawyer, not quite a lobbyist. But someone with the know-how, the connections, and (hopefully) the influence to make sure somebody gets that to which he or she is entitled. An advocate is someone who brings the qualities to empower someone else who may feel they are at a disadvantage. Or, maybe, they bring the time and effort to fight the necessary battles on behalf of the person whose time is too consumed with the very thing that necessitates the battle. It’s often a one-on-one sort of thing.
For a student who is unable to climb a flight of stairs, an advocate may pressure a school to install ADA-compliant ramps, as opposed to shuttling the student to a different school in another town that already them.
For a parent who cannot transport their disabled child to doctor’s appointments, an advocate may help solicit donations for a wheelchair-lift-equipped vehicle.
For the victim of a crime, an advocate may help to deal with the logistical difficulties of working through the legal system, obtaining emotional counseling, or finding peer-support.
There are many types of advocates. They are often affiliated with nonprofits, some are volunteers. But generally, they tend to work with the best interests of the individual they are supporting in mind.
The diabetes community is different. We have hundreds, if not thousands, of self-proclaimed advocates. Our advocates are more of a collective voice than one-on-one providers of guidance. There’s no doubt that this type of advocacy works – StripSafely and #DOCasksFDA immediately come to mind. The power of numbers comes into play here: the larger the numbers, the louder the message, which leads to a greater influence.
But I worry that something gets lost in the numbers. Although I, personally, am very much a “numbers person”, larger numbers tend to lack any sort of realistic context to me. According to the American Diabetes Association , the number of Americans with diabetes in 2012 was 29.1 million, up from 25.8 million just two years prior. There are other numbers at that link: 69,071. 282,000. 73,000. 245 billion.
I won’t get into what those numbers represent (you can click over to the ADA page if you care to look them up), but each one can be – and probably has been – used in a frightening statistic to try to sway some sort of policy or public opinion. But in the end, do the big numbers work?
I simply can’t comprehend the reality of numbers like that. Like the National Debt, in the end these numbers all translate in my mind simply to “a lot”. Or, in some cases, “insurmountable” and “why even bother trying?”
And when someone tries to tackle that big number, 29.1 million, to which my contribution is a measly – although unique (as they all are) one – it hardly makes me feel represented or that I’ll see any sort of benefit from the effort anytime soon. When you make a broad generalization across millions, you tend to miss a lot. (At a high level, they miss the differentiation between Types, but even within the Types there are countless unique cases).
So, while I appreciate and recognize the benefit of the large-scale efforts, they just don’t have the same effect as the other types of advocacy. The one-on-one kind.
I think the shift to large-scale advocacy may be why some folks, especially the newly diagnosed and their families, often feel discouraged after a few years. They start out vigorously raising money and writing to their senators and spreading awareness, and then the motivation dies out.
Because they’re still left to fight the battles with insurance companies.
They’re still left to learn how to develop the perfect 504 plan and set it into motion. By themselves.
During the first week after discharge from the hospital, they still need to distribute fuzzy eighth-generation photocopies of the “signs of hypoglycemia” handout developed in 1984 to their supervisors and their teachers, because they don’t yet know how to explain what is really happening.
And they still struggle with social acceptance, because the generic literature that is available on this very topic is geared towards the masses and not the individual person. Yet feelings and emotions of acceptance are very personal, and a we all know that “one-size-fits-all” never quite fits anyone perfectly.
(And as I write the last few lines, I contemplate replacing “they” with “we” — the difference not trying to be exclusionary, but to reflect the amount of experience and learnedness a person has developed – the hard way – in these areas).
But back to the numbers.
The numbers that really matter are the low ones.
In the vast majority of my interactions, I am the “one of these kids” who is not like the others. I can see what things about me are different. When it comes to how diabetes makes my life different than that of a non-D, that contrast and that attention, is meaningful, powerful, and noticeable. Certainly moreso than being lumped in a group of 29.1 million.
When diabetes affects more than one member of a family, it’s easy to comprehend the big impact of these small numeric increments. These numbers hit me harder than the number one, because I know the subsequent diagnoses aren’t simply the “repeat” phase that follows lather and rinse. It’s more like, “turn off the water. Step out of the shower. Dry off. Get dressed.” Then repeat. Day after day.
It’s a small enough analogy that it makes sense. It’s more meaningful than two or three out of 29.1 million.
So what’s my point in all of this? I think we need to revitalize the small-scale advocacy. To complement the big stuff, not replace it.
It’s not that we should plaster Piper’s image and the fright-filled caption across the media everywhere. That doesn’t help explain the plight. And for Piper, I’m sure that she didn’t find that the day after this ad was published was any easier than the day before.
I think we need to return to the grassroots of advocacy. I think we need to help and support those who need help and support. We should get up-close-and-personal with the people who are affected most, and so something so that their tomorrow is better than their yesterday.
Empower them to make their own lives and their own interactions better. Accompany them to the school Superintendent’s office. Help them to develop their personalized “I have diabetes” revelations to their new bosses. Assist in the personal and individualized appeals to the insurance company denials.
I’m not quite sure who can do this in a coordinated, organized manner, but I’m sure we can all find one person – offline and in person – for whom to advocate in their interactions and (inevitably) confrontations.
For those who feel that attaching their name to a letter or Tweet that matches thousands of others just isn’t enough, or who feel that they are ready to take their advocacy to another level, this may just be a way.
To borrow (and re-purpose) a phrase from Bozell, “Be the voice of One“.