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.

Why?

Because they’re still left to fight the battles with insurance companies.

By themselves.

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.

One.

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.

Two. Three.

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“.

Advertisements

Posted on November 14, 2014, in Diabetes. Bookmark the permalink. 6 Comments.

  1. Very well said Scott. One on one is so important. To go along with this, I’d like to see a place where people can find that person to help. Where they can get connected, then go from there. But I’m already making it bigger. Diabetes is a personal disease. Helping people deal with it personally is very powerful. Thanks

    Like

    • I agree – but finding that place tends to vary depending on where you are. Some doctors’ offices have groups (mine has a Type 1 “meet-up” — patients only, no doctors — every other month). Some JDRF chapters have a strong mentoring program, and some don’t. I think ADA is good at standing up and representing individual PWDs who’ve been wronged in legal disputes, but I don’t know that this extends to other matters of life. It’s hard to know where to turn to look for help; that’s why I think it’s good for those of us who are in a position to help to be proactive in offering it.

      Liked by 1 person

  2. The happiest feelings for me are when someone I don’t know well reaches out to me and says, “I know someone who just got diabetes and my first thought was to connect them to you, can you help?” I might only send the newly diagnosed an email with information or we might meet up once or twice, but I know I’ve made a huge difference to that one person and, for a brief period of time, it makes this all seem worth it.

    Like

    • I totally get it. I think those of us who want to help are eagerly awaiting an opportunity to do so. And on the other side, there are probably a bunch of people raising their hands shouting “pick me! pick me!”. As Stephen mentioned, if only there were a way for one side to see the other.

      Like

  3. My son is 11 and diagnosed with type 1 for three years now and he is currently using an omni pod pump and in the past 6 months we have had a terrible time with his A1C level climbing but blood glucose levels are normal drs have checked pump and strips for malfunction also have done numerous other things to try and figure out what is going on. Still no leads. Last appt they practically accused my son of using someone else’s blood to get good blood sugar levels or that he may be using the control solution to alter levels and I know for a fact that he is not doing that its so discouraging to me, a single mom, knowing I work so hard to keep him on track and then get accusations like this???!! Plus my son is in tears because he is terrified to know the Dr is accusing him of something he didn’t do!! We live in a small town and there are no local support groups nor any types of type 1 awareness local that concerns me. Even our schools are not educated enough on it. We don’t even have funding for a school nurse for my son the whole county has six schools and one nurse for all.

    Like

    • Shelia – The sad thing is that kids fake their blood sugars a lot (I know I did). The doctor is probably just using past experience to jump, unfairly, to a conclusion. I know this doesn’t justify the accusations, it’s just a glimpse of what may be going on in his mind.

      From a clinical perspective, I think a CGM may help identify where the highs are sneaking in that aren’t caught by the fingersticks (overnight, perhaps?). Before I was on a CGM full-time, my CDE hooked me up to the Medtronic “iPro” (or one of the variants), which stores the data for about a week, and she would download it later and look for patterns; I couldn’t see the data in real-time. Dexcom now has a multi-patient version of their CGM which doctors can issue to patients for about a week at a time to help identify trends — it’s certainly cheaper and less of a commitment than signing up for one full-time.

      From the social/connections aspect, would you mind sharing the general area in which you live? (State, perhaps county; I wouldn’t go more detailed than that). I’m sure we can find someone in your area who you can meet up with. Or, if you’re assertive enough, you can talk to others in your endo’s waiting room. Who knows, someone else may relate to those accusations firsthand.

      Good luck. We can try to help you make connections for you online if you like. TuDiabetes.org is also a good place to start; that’s more conversational, whereas blogs take on a bit of a different tone and may not be exactly what you’re looking for.

      Like

Discuss.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s