Category Archives: Advocacy

Advocacy with a little “a”.

#DAM
#NDAM
#T1DLookLikeMe
#WDD
#WDD17

However you hashtag it, Diabetes Awareness Month is here again. And right behind it, a feeling of being overwhelmed by the sheer magnitude of all the posts and blue circles and everything else that makes up November for those of us living with and affected by this disease.

Then, sometime after we get over feeling overwhelmed, we move into the feeling guilty phase, where we compare ourselves to those who seem to have all their DAM Diabetes Awareness Month shit together better than we do. Especially when it comes to advocacy.

So before this gets out of hand, let’s stop long enough to take a big breath…

I’m fond of saying this to people, and I’ll probably say it tonight when I speak in front of a group from our area. This might even come as a shock to you, but here it is:

The effects of advocacy are large…
The steps we take to practice advocacy are often very small.

Hey, I want to take on the world too, and I want to bring the diabetes awareness to the masses in ways that have never been imagined before. Will I? Not this week.

Instead, tonight, I’ll sit with my neighbor, a dietician at Johns Hopkins Hospital, in front of about 20 Lions Club members. I’ll tell them about what it’s like to have to think about every single piece of food you put in your mouth, every time you eat.

I like to call that advocacy with a little a. I won’t be presenting in front of hundreds at some symposium on another continent. I won’t be crossing the country to organize and lead a protest. Instead, I’ll be heading off to Golden Corral and sharing what I know, so the people in attendance can share my message with others.

It’s a small thing to do, this advocacy with a little a. But sharing our story with others is just as important as symposia and protests. And just as powerful.

Each of us, regardless of our education level or job status or social media profile have a story to tell. It’s our story, full of chapters that many others have written, but no one else has experienced quite the way we have. We are the authors of our own epic.

Our unique perspective on life with diabetes may be exactly what another person needs to hear. It may be the exact message they’ve been searching for. Without you sharing your story, they might not receive the message you are uniquely qualified to deliver.

So before you get overwhelmed, or heaven forbid, feel guilty about coming up short this November, remember:

It’s not a contest.

The effects of advocacy are huge.

The steps we take to practice advocacy are often very small.

Advocacy with a little a is powerful, no matter what the calendar says.

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A new role.

Since I became part of this Diabetes Community, I’ve been encouraged by a number of people to tell my story… to raise my hand… to ask questions… to speak my truths.

I was encouraged by Christel, who wrote this blog post nearly two years ago, and has had me thinking about how to use my voice ever since.

I’ve been encouraged by Cherise, who, for the last five years, has reminded me constantly that my voice matters just as much as anyone else’s.

I was encouraged by Bennet, who told me over four years ago:
“I tend to think of us as more inclusive than exclusive. We need all the advocates we can get”.

Thanks to the encouragement of these friends and many others, I can now reveal that Maryland’s Secretary of Health has named me to the initial State Advisory Council on Health and Wellness.

The council is pretty big: 34 members. Sixteen are from groups like the State Department of Health, Department of Aging, and Department of Education; plus groups like the American Heart Association, The American Diabetes Association, Johns Hopkins Medicine, and the University of Maryland School of Nursing. The remaining 18 members are individuals like me. My term will last two years, during which I will attend two meetings of the full Council each year, plus at least four quarterly meetings each year working with a committee, hopefully on diabetes.

I don’t know where this is all headed. But I know this: the people in the room get to be part of the discussion.

We need people in the room.

So, as I have been challenged, let me challenge you:

– Think about and search ways to use your voice within your very own community.

– Remember that your voice matters just as much as anyone else’s.

– Don’t forget that we need every single advocate we can get.

I will also add: Look for places and ways to help others find their voice too.

I’ve often wondered if my writing and podcasting might eventually lead me toward more of a public service role than I had imagined five and a half years ago. I guess the answer is Yes. In fact, my service is now dedicated to my Diabetes Community, and my entire community on a statewide level.

My encouragement to you is to get into the room. Break the door down if you have to. Be part of the discussion.

People find their roles in ways they often cannot foresee when they begin a journey. The lovely part is enjoying the journey, and making each role as meaningful as possible. I’m looking forward to this next chapter in my life.

Same lies, different week.

They’re back.

Lawmakers in the U.S. Senate are trying to take away health care from the Americans they represent. Again.

The newest effort, the Graham-Cassidy-Heller-Johnson proposal, or Graham-Cassidy, as many are calling it, is pretty much the same effort that failed earlier, in a different package. I guess the only thing different about this one is that this time, four guys are actually stupid enough to attach their names to it.

But the basics of the bill are the same as others: Remove Affordable Care Act subsidies and replace them with block grants. Nice idea, but it really never works. And even if it sort of works, it only works on a state-by-state basis. So the truth is that, best case scenario, many patients in many states would have significantly reduced access to care. Even less access to care than before Obamacare was passed.

The bill also proposes to defund Planned Parenthood (again). Like I’ve said before, you can’t do that without saying to millions of American women that breast cancer screenings and other preventative procedures aren’t important to you. That’s a hard sell.

The bill also states that it will “protect patients with pre-existing medical conditions”. Well, excuse, me, but I already have that protection today. This bill doesn’t promise anything new on that, except the assertion that this “protection” they speak of would also come with significantly increased premiums for people living with pre-existing conditions like diabetes, high blood pressure, and yes, pregnancy.

Senator Lindsey Graham, in repeated interviews, has stated that I don’t have to worry, that I would still be able to purchase insurance if this passes. Hey, look, I can still purchase a $120,000 Tesla, but I can’t afford it. This is the same thing: Making health care a luxury product, rather than a right for all Americans.

It still comes back to the same thing for me. If a “repeal and replace” bill can’t offer at least the same access to coverage, at the same cost, as the Affordable Care Act does today, it’s going to be a non-starter for Americans. Especially since half or more of us live with those pre-existing conditions.

We’re tasked once again with defending our right to health care. Contact your elected officials right now. Once again, American lives are at stake.

DOWNLOAD THE DPAC APP on your Apple or Android device –
Use it to contact your elected officials and encourage them to vote No on Graham-Cassidy.
Your voice matters… and you can speak it to your elected officials in less than one minute using the DPAC App.

We have a winner!

How many of you remember this post from a few weeks ago?

I have received multiple responses to this, and I am happy to announce that we have a winner.

Because a second, generous donor (who wishes to remain anonymous) stepped forward, we were able, together, to provide registration for the Diabetes UnConference and two nights’ stay at the Embassy Suites Alexandria, the host hotel for this gathering.

Like I said in the original post, I realize this doesn’t make everything suddenly more equal and inclusive at diabetes events throughout America. Especially in light of the terrorism that took place in one of my favorite places in the world, Charlottesville, Virginia last weekend, this seems like a rather meek gesture.

Sometimes we can’t change the whole world… but we can influence our little part of it.

I am thrilled about sending our winner on this trip, and they are excited about attending.

I’m not sharing the identity of the winner. I thought about it. But I felt that whether I did or I didn’t reveal, I could be open to criticism. By not revealing, someone could say that I’m trying to make it about me, or hide the fact that I did this. That’s a ridiculous argument, but someone could say that. If I did tell everyone who it is, I risk looking like I’m showing them off for my own benefit, which, frankly, is not what this scholarship offer or the Diabetes UnConference is about in any way.

So our scholarship winner is free to share that they are the scholarship winner, should they want to. But again, in the spirit of inclusion, I want them first and foremost to be thought of as a welcomed attendee… as a valued member of our tribe… as a respected contributor to our community… as a person.

For now, there is still time to register for the Diabetes UnConference Alexandria (co-located with Diabetes Sisters’ Weekend for Women conference), happening October 13-15. Room reservations are filling up fast, so if you want in, your time is limited.

I can truly say that it has often been imitated, but never duplicated. It is that special and unique. Come to our gathering and share. Experience. Explore. Not about diabetes life, but about life with diabetes. No structure. No judgement. Find your tribe. Love them hard.

See you in October!

Disclosure: I will be part of the team of facilitators at the Diabetes UnConference Alexandria October 13-15, 2017. All opinions are my own.

Just one step.

Update: Another donor has graciously stepped forward, and now I can say that we can provide registration for the Diabetes UnConference and Friday and Saturday night at the destination hotel for the event. Yay!
I will pick a winner on August 14.

I read with great interest this well-written article from Chelcie Rice that was featured over at Insulin Nation recently. Christopher Snider and his sister Jeanette talked about the post and the subject on their podcast, Mark All That Apply. I think both are worthy of attention, and for what it’s worth, both have me thinking about this subject again.

As I mentioned to Chelcie after he linked to his story on Facebook, I think about the lack of diversity every time I attend a diabetes event. It’s not that there is a lack of color at events; often, there is no color at all. Even though we all know that people of color are disproportionately affected by diabetes. It’s something that’s entirely different from the ethnic makeup in every other part of my life.

But hey, I’m an advocate… but wait, I can’t change my ethnicity… so what should I really do if no one shows up who doesn’t look like me? I’m not sure exactly what I should do. But I know what I can do.

I will promise to provide one scholarship to this October’s Diabetes UnConference to a person of color. I will promise to pay for registration to this event in Alexandria, Virginia.

This will only include the price of registration. I’m not rich enough to include travel, so that will not be included. I can’t guarantee much else either. But hopefully, this is something, and hopefully it will get someone to consider applying for the scholarship who up to now has been on the fence about attending a diabetes event.

Why am I doing this? Because I’m altruistic and wonderful? It’s a little more complex than that.

The truth is, every single time I’m at a conference or research summit, I notice the lack of diversity in the room, and I think about it. This past Friday’s Outcomes Beyond A1c meeting (more on that later in the week) was an exception, but most of the diversity in the room came from outside the USA. To this point, I haven’t done anything about what I’ve seen.

I’m also well aware that this won’t exactly solve the issue of diabetes meetings, conferences, etc. that are not as diverse as they could be. I mean, it’s not like people of color have been excluded from the events I’ve attended. And where there has been diversity, it appears to me that people have been welcoming.

But by and large, diabetes conferences and other events still look different from the way the rest of my world looks. And if doing this one, small thing helps to begin to change that, if it begins to help communities that have been underrepresented, I’m comfortable with my decision.

There are powerful leaders among us, and it would be ludicrous to think that they are all white. As I’m fond of saying, we need all the advocates we can get. Frankly, I don’t care what they look like. And while I can’t speak for them, I suspect that the white friends I have in the diabetes community feel the same way.

Likewise, there are many in need of support and empowerment in the diabetes community, and I have to believe the needs I see among those who look like me are at least matched by those who do not look like me. And if they’re in need, frankly, I don’t care what they look like.

I haven’t thought very hard about rules for this little effort. But for starters, here’s what I’m looking for:

– You need to be a person of color (loosely defined; in other words, you don’t look like me)

– Since this is for the Diabetes UnConference, you must be an adult living with diabetes, or an adult close to someone living with diabetes of any type

– You need to want to use your opportunity to help others… paying it forward is part of the plan

We’ll make up the rest as we go along.

If you’re interested, send me an e-mail using the E-Mail Stephen link in the upper left part of this page. On August 14, I will pick a winner from among those responding. Be ready for follow-up questions. I don’t want to make it difficult for you, but I do want to make sure you can make it, and I want to make sure this event is a good fit for you.

One more ask: Please share this with others you know in the diabetes community. I would be thrilled to have to choose from a number of applicants.

Finally, this is not all there is. If we think about it, probably all of us, no matter what we look like, can figure out a way to help make diabetes events look more like the rest of the communities we live in. I’m hoping I can provide scholarships in the future. Not sure if I can, but that’s the goal. But that’s not all I can do. Whether it’s through communicating with additional diabetes groups, or through a donation, or through continuing to be a welcoming presence wherever we are, I know you and I can help make diversity a part of the diabetes advocacy we all believe in.

We all want to reduce the burden of diabetes on everyone living with this disease. This is just one small step. A symbolic step perhaps, but it’s what I can do.
Now, let me ask: What can you do?

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